PhD in Occupational Science
In fulfillment of the requirements for the PhD in Occupational Science, doctoral candidates complete a written dissertation in consultation with their academic advisor. Dissertations typically include a rationale, a concise and incisive synthesis of literature, methods, preliminary data and publication plans for work emanating from the dissertation.
One of the most consistently reported markers of autism is difficulty establishing and maintaining meaningful social connections. Autistic women have been found to present differently on the spectrum including a unique social profile. Moreover, autistic women have been less studied compared to men, and even less for autistic women of color. The current study includes eight autistic women of color aged 19-43 from various backgrounds and uses social network analysis and narrative phenomenology to explore autistic women’s social expression. Each woman was interviewed 3-4 times and have completed an adapted social network analysis survey that was specifically developed for this study. Findings revealed unique social patterns including social engagement and expression but no sign of a social ‘deficit’. Implications and suggestions for further research are discussed.
The intersection of oral care experiences, culture, and autism for Black American families: A mixed methods study
Sandy C. Takata OTD, OTR/L
Precision care to optimize safe return to function following surgical flexor tendon repair
The occupation of work has been perceived as associated with self-identity and provides meaning and satisfaction to one’s life. By engaging in the productive occupation of work, people can express autonomy, attain self-fulfillment, and have a connection to society. However, the negative impact of work has received less attention. One common example of negative musculoskeletal health impacts of occupation occurs in industries that require high demand of hand force, repetition, or awkward postures, where workers have a high risk of developing carpal tunnel syndrome (CTS).
As technologies advance, there is an increasing opportunity to use physiological biomarkers to study the positive and negative impacts of occupation on body structures. The aim of this dissertation was to identify how intraneural blood flow can be validly examined and to begin understanding the effects of environment and occupation on this biomarker.
Background: Social deficits in Autism Spectrum Disorder (ASD) commonly involve abnormalities in intention understanding and empathy. There is substantial evidence to suggest that individuals with ASD have difficulties with cognitive empathy (for review see Frith and Happé, 2005); however, emotional empathy deficits are unclear. The presence of co-occurring alexithymic tendencies in ASD (Bird, et al., 2010) and alterations in interoceptive processing (Fukushima, Terasawa, & Umeda, 2011; Grynberg & Pollatos, 2015) are associated with reductions in empathic ability. The purpose of this study was to answer the question: how do emotional empathy, alexithymia, and interoception interact with 1) each other, 2) neural activity, and 3) neural connectivity of mechanisms of emotion processing during facial expression observation in TD and ASD youth.
Methods: Self-report and interview data were collected to explore relationships between interoceptive sensibility, alexithymia, and emotional empathy in 35 high-functioning youth with ASD and 40 typically developing (TD) controls (ages 8-17). A sub-sample also completed an imaging study (TD; n = 37, ASD n = 28). fMRI data was collected inside a 3-T Siemens MAGNETOM Prisma scanner, where participants observed video clips of facial expressions presented in a block design. Both groups were entered into multivariate linear regression models for the task for exploring main effects and between-group comparisons. Anatomically and functionally defined neural regions of interest (ROIs) included the ACC, AI, amygdala and IFGop. Psycho-physiological interaction (PPI) analysis was performed to determine task-based functional connectivity between left ventral AI seed region, and the rest of the brain. Parameter estimates of predetermined ROIs were extracted. All data were analyzed using two-tailed independent sample t-tests, Pearson partial correlation, stepwise multiple linear regression, and hierarchical linear regression.
Results: Major behavioral findings include: 1) The ASD sample had increased alexithymia and physiological hyperarousal, but no significant differences on any measures of interoception or emotional empathy skill in comparison to TD participants; 2) In ASD and TD, alexithymia in ASD is associated with lower empathic concern, and higher personal distress; 3) In the TD group (with low incidence of anxiety), those with higher interoceptive sensibility tended to have lower personal distress; and 4) in the ASD group, greater alexithymia severity, and higher personal distress to others’ emotions is associated with reduced reporting of bodily sensations during negative emotions (BSE-neg); 5) support for the alexithymia hypothesis in personal distress.
Major neural activity findings include: 1) support for the alexithymia hypothesis in the right amygdala 2) reduced left IFGop activation in individuals with ASD compared to TD individuals; 3) empathic concern as the strongest predictor of left IFGop activation and ADHD symptom severity as the strongest predictor of right IFGop activation in ASD; 4) opposite relationships in left and right amygdala with alexithymia 5) opposite patterns of relationships between interview vs self-report questionnaires of interoceptive information with ROI’s.
Major connectivity findings included 1) alexithymia is associated with reduced left AI-left precuneus connectivity, and reduced right dorsal AI-left ventral AI connectivity during facial expression observation; 2) inverse relationships between BPQ-VSF and interoceptive interview variables (BSE, BSE-neg) with behavioral and neural outcomes of alexithymia and emotional empathy; 3) in the ASD group, higher connectivity between left ventral AI-right lateral prefrontal cortex during facial expression observation.
Conclusions: Behaviorally we show that interoception and emotional empathy ability are intact in ASD, and that alexithymia severity is higher in ASD. We find inverse patterns of relationships with emotional empathy and alexithymia, where alexithymia is positively correlated with personal distress and negatively correlated with empathic concern. We show support for the alexithymia hypothesis only in the personal distress domain, as alexithymia predicted higher personal distress above and beyond the influence of group status (ASD). For bodily awareness variables we observed that BPQ-VSF may be indexing maladaptive empathy outcomes, (reduced emotional empathy) and may measure something more similar to physiological hyperarousal, which was positively correlated with alexithymia.
Our data indicate a dynamic interplay between: 1) the amygdala, which is strongly involved in emotional empathy processes and affected by alexithymia presence, differentially in right and left hemisphere, above and beyond ASD diagnosis; 2) the anterior insula, which is strongly involved in visceral and interoceptive sensory processing, empathic concern processing, and alexithymia; 3) the IFGop, which is involved in empathic concern, attentional/inhibitory, and social and motor processing, interoceptive sensibility, and shows differences when comparing groups based on ASD diagnosis. Across the dissertation, in behavior, neural activity, and neural connectivity certain traits consistently clustered together to reflect associations between patterns of embodied responding, emotion understanding, and emotional empathy style. Here, I attempt to characterize these two styles observed in ASD as a “reactive” and a “responsive” style to bodily cues, emotions, and emotional empathy. Therapeutic implications and future directions are discussed.
Yun-Ju (Claire) Chen
Developmental trajectories of sensory patterns in young children with and without autism spectrum disorder: A longitudinal population-based study from infancy to school age Full text Show abstract
Past research has demonstrated the ubiquitous presence and early emergence of sensory patterns, including hyperresponsiveness (HYPER), hyporesponsiveness (HYPO), and sensory interests, repetitions, and seeking behaviors (SIRS) in children with autism spectrum disorder (ASD), as well as the potential role of sensory processing as a key building block for higher-level social and cognitive functions. Whereas previous findings highlighted the cross-sectional differences of sensory patterns across age and diagnostic groups, it remains unclear how the developmental trajectories of sensory patterns in ASD differ from those with other diagnostic outcomes. More evidence is needed to understand the developmental and heterogeneous nature of sensory patterns in young children with ASD among a general population, as well as how they are associated with broader developmental outcomes, such as adaptive/maladaptive behaviors and participation, in order to evaluate the contribution of sensory patterns to the early identification, diagnosis and prognosis of children with ASD and/or other developmental challenges.
To address these empirical gaps, this dissertation aimed to 1) model developmental trajectories of sensory patterns from infancy to school age in a community sample and explore the demographic and clinical factors that may account for their variability; 2) identify developmental trajectory subtypes of sensory patterns as associated with school-age outcomes, and 3) understand the specific longitudinal impact of sensory patterns on school-age outcomes. We followed up on a longitudinal cohort of children (N=1,517) from a large community sample whose caregivers completed surveys regarding their child’s sensory patterns and other developmental concerns at three time-points: infancy (Time 1: 6-19 months), pre-school years (Time 2: 3-4 years), and school years (Time 3: 6-7 years). At Time 3, we collected additional outcome data on autism symptoms, adaptive/maladaptive behaviors, and activity participation in a subsample (N=389) that included families who had reported any diagnoses or concerns (N=312) and those who had not reported any diagnoses or concerns at previous time-points (N=77).
In Study 1, we conducted multivariate latent growth curve modeling (LGCM) with demographic covariates to estimate sensory trajectories from Time 1 to Time 3 with the full sample (N=1,517) and the results revealed highly variable longitudinal patterns across the three sensory patterns. Such variability could be partially explained by demographic characteristics (i.e., child’s sex, race, and parent education) and clinical outcome status (ASD and non-ASD conditions). Particularly, the slopes of HYPER and HYPO were better able to differentiate ASD from other conditions, including non-ASD children with sensory issues. Parent education accounted for more of the variations in trajectories of children’s sensory responsiveness than child’s sex and race. Furthermore, the latent growth factors of the three sensory patterns were associated with each other, indicating their co-occurrence and co-development over time. These findings from Study 1 support the potential utility of longitudinal sensory patterns from infancy for early detection of ASD and the pivotal role of family-tailored approaches to address young children’s sensory challenges.
To further address the variability that could not be explained by the known factors (i.e., demographics and clinical outcome status) in Study 1, we performed latent class growth analysis (LCGA) to identify the sensory trajectory subtypes from infancy to school age among the full sample in Study 2. We also examined how children classified to these trajectory subtypes differ in their demographic characteristics, clinical outcome status (ASD and non-ASD conditions), and school-age outcomes, including autism symptoms, adaptive/maladaptive behaviors, and activity participation. As a result, we identified five distinct subtypes that vary in latent growth factors across sensory patterns. Particularly, there was a subtype (3% of the sample) characterized by elevated and worsening sensory patterns and highly associated with ASD and poor school-age outcomes. The other four subtypes were characterized by low to moderate levels of sensory patterns and generally stable/improving trajectories and were associated with strengths and weaknesses in school-age outcomes. These results indicated that profiling children based on their early sensory trajectories may help to identify children who are more likely to experience developmental challenges at school age and may thus introduce opportunities for early intervention.
In Study 3, we examined the specific impacts of sensory trajectories on each school-age outcome variable. Multivariate LGCM was performed with demographic covariates and latent growth factor regressions, and school-age outcome variables were included in the model by being regressed onto the latent growth factor of sensory patterns. Overall, the change rate of HYPER was the most significant predictor of school-age outcomes. The initial levels of sensory patterns had indirect effects on some distal outcomes via the change rates of HYPER and HYPO. Differential impacts of HYPER and HYPO were observed on maladaptive behavior: HYPER was more associated with internalizing behavior while HYPO was more with externalizing behavior. Also, the variations in autism symptoms and maladaptive behavior were explained to larger extents by sensory trajectories as compared to other behavioral domains. These results indicate that early sensory challenges may have cascading effects on other domains of behavior. Thus, sensory responsiveness during this period may be an important target for early intervention towards more optimal outcomes.
Overall, the findings of these three studies enhance our understanding of the developmental and heterogeneous nature of sensory patterns from infancy to school age in a large community sample with various clinical characteristics, including ASD and non-ASD conditions. The observed associations between early sensory trajectories and later school-age outcomes may indicate the critical role of personalized intervention or services for children with sensory challenges and their families across early development towards optimal outcomes.
Workload from time during work has often been studied as a factor impacting worker well-being and functioning, but the impact of whole day workload has received less attention. Investigation of how workload experienced over a whole day contributes to worker well-being and functioning is consistent with a paradigm shift within occupational (work) safety and health by considering both work and non-work factors affecting workers. Workload is also relevant to the lifestyle balance literature in occupational science, specifically the investigation of strenuous (high demand) versus restful activity engagement dimension of life balance.
The purpose of this study was to investigate the relationship between whole day workload and other measures: activity engagement, stress, and cognitive performance. We analyzed data on adults with type 1 diabetes from whom we collected survey data 5-6 times daily over 14 days, as part of an R01 study (Function and Emotion in Everyday Living with Type 1 Diabetes, FEEL-T1D). A variety of statistical methods were used including calculation of between and within-person correlations, multilevel structural equation modeling, and linear mixed modeling. Study results are presented in four articles within Chapters 2 through 5 of this dissertation.
Chapters 2 and 3 examine the validity of measures of whole day workload and daily activity frequencies administered in the ecological momentary assessment (EMA) context, both of which are integral to our study. Formal validation of these measures had not existed prior, as EMA measures generally are not formally validated as often as traditional global measures. We found preliminary evidence supporting the validities of both the whole day workload and daily strenuous/work/leisure activity frequency measures. Chapter 2 is a pre-review version of an article published in Ergonomics, and chapter 3 is a derivative of an article published in the International Journal of Environmental Research and Public Health.
Chapter 4 provides results of the application of the measures formally validated in chapters 2 and 3 to investigate if daily frequencies of activities with well researched relationships with stress (i.e. work hours and leisure/rest) impacted stress through their effect on whole day workload. We found that whole day workload mediated 66% (p<.001) of the relationship between work hours and stress, 63% (p<.001) of the relationship between rest frequency and stress, and 44% (p<.001) of the association between active leisure and stress. Our results provided preliminary evidence that whole day workload may be an influential precursor of stress, and thus may deserve further investigation in research and/or interventions focused on worker stress.
Chapter 5 was an investigation of whether whole day workload could also impact worker functioning, specifically cognitive performance. From mixed models, we found that greater within-person whole day workload had a significant Granger causal relationship with decreased processing speed the next day (beta=-1.05, 95% CI -1.94 to -.19), but not next day sustained attention ability (beta=-.001, 95% CI -.003 to .001).
In conclusion, we found evidence supporting the validity of a whole day workload measure used in the EMA context, and that whole day workload had significant relationships with activity engagement, stress, and cognitive performance. Whole day workload is a more holistic measure than work specific versions and may be integral to understanding day to day fluctuations in people’s well-being and performance capacities. We hope that our findings encourage further research on whole day workload, especially in the worker well-being literature in occupational health and in the lifestyle balance literature in occupational science.
Caregiver-infant co-occupations provide infants the opportunity to build crucial foundational capacities for cognitive, social-emotional, and sensory processing development. Within these occupations, the infant and caregiver engage in an ongoing interplay of processes, or transactions. The transactions that occur between infant capacities and caregiver responsiveness within occupations in early life may have cascading effects on later developmental domains. As such, the overall purpose was to understand infant capacity development within occupation and how mother-child transactions in early life contribute to later developmental outcomes in toddlerhood. This dissertation was comprised of three concurrent longitudinal studies using a primarily Latinx sample from a larger grant-funded study.
The first study aimed to explore development of infant gaze, affect, and object exploration capacities at five timepoints across 2 to 18 months. We used videos of mother-infant play co-occupations at each timepoint to behavioral code durations of infant capacities. Descriptive statistics for capacities and coordination of capacities were obtained at each timepoint. Repeated measures analysis of covariance investigated development of capacities from timepoint to timepoint, and latent growth curve analyses were conducted to analyze developmental trajectories of capacities across 2 to 18 months. Results indicate an important development period from 2 to 6 months, unique developmental patterns of capacities in relation to prior literature, and heterogeneity in gaze development.
The second study aimed to understand transactional pathways between infant looking capacities and maternal responsiveness and the relationship to joint engagement at 24 months and social-emotional competence at 24 or 36 months. Infant looking and maternal responsiveness were coded from videos of mother-infant play at 2, 6, 9, 12, and 18 months. Joint engagement was coded from videos of mother-child free play at 24 months, and mothers completed a parent-report measure of social-emotional competence on their child at 24 or 36 months. Structural equation modeling was conducted to test the developed transactional model. Transactions between infant person looking capacities and maternal responsivity appeared to influence the development of joint engagement, while joint engagement was related to social-emotional competence.
The third study investigated transactional pathways between infant looking capacities and maternal sensory intensity and the relationship to sensory features of the child at 24-42 months. Similar to the second study, infant looking capacities and maternal sensory intensity were coded from mother-infant play videos at five timepoint from 2 to 18 months. At 24 or 36-42 months, mothers’ completed a parent-report measure of sensory features on their child. Structural equation modeling was used to test the hypothesized transactional model to sensory features. Transactional pathways to sensory features were not significant; however, results suggested transactions were present between infants’ looking at their mothers and the mothers’ sensory intensity across 2 to 18 months.
The cumulative findings of this dissertation provide evidence that play occupations between infant and caregivers, and the transactions that occur within them, are critical for understanding child development. Future studies should aim to replicate the findings of this dissertation with a bigger sample, and investigate relationships among infants and mothers at each timepoint.
Kaori (Lily) Ito
Neural and psychosocial correlates of age-related differences in goal-directed and habitual decision-making
This dissertation explores the experience of autistic young adults and their families. The priorities of autistic people have been largely ignored by researchers and clinicians who serve this population. The data presented here has been drawn from three separate but closely related studies conducted between 2016 and 2021. One project, initially developed for this dissertation, sought autistic adults to share their experiences related to community-based occupations. The other two projects (Adult Collective Narrative and Autism in the Community), sought to enhance understanding of the experience of autistic adolescents and young adults and their families through interviews with a broad range of family, practitioners, and community members of autistic young adults. Participants in all groups reported persistent difficulties and institutional barriers to accessing meaningful services and safe community spaces. A mismatch in priorities between autistic people and the funders of service systems was identified as a primary concern for autistic adults and their family members. Participants fears related to violence at the hands of police are described. Historical analysis of trends in service provision, advocacy, and public policy highlight the systemic nature of the issues that contribute to distress and poor outcomes for autistic people.
A mixed-methods exploration of oral health beliefs and practices among Latino families with typically developing children or children with autism
Mindfulness meditation is the practice of targeted paying attention to thoughts, emotions, and body states. This is done with an attitude of openness, curiosity, and non-judgment. While mindfulness meditation originates from Buddhist practices, it has been adapted into a mind-body intervention in western healthcare. Over the past 30 years a large base of literature including multiple randomized controlled trials and systematic reviews have provided evidence for the effect of mindfulness meditation to improve chronic pain, anxiety, and stress. A subsequent theoretical discussion has developed concerning how mindfulness relates to clinical practice in occupational therapy. Yet, clinical studies translating mindfulness meditation interventions to occupational therapy are all but nonexistent. Such translational work is vital because existing manualized mindfulness meditation interventions are very time-intensive and do not fit within the standard patient encounters occupational therapists provide. It is unclear if a more scaled-back implementation of mindfulness meditation is acceptable to occupational therapy patients, feasible within the setting, and still yields the same benefits as more intensive interventions. ❧ This work takes the first step at establishing the utility of mindfulness meditation as an intervention in occupational therapy. Because occupational therapy practice areas are quite broad, we narrowed our focus by using outpatient hand therapy as the initial case. First, we implemented a cross-sectional needs assessment for 120 hand therapy patients asking about interest in receiving mindfulness meditation as a part of care and also assessed a battery of psychosocial outcomes. Using a forward stepwise logistic regression predicting patient interest, we found that women and individuals with higher self-reported disability were more interested in mindfulness meditation. Also, that patients’ trait mindfulness was correlated negatively with psychosocial symptoms such as anxiety and depression. ❧ Secondly, we implemented an explanatory QUANqual, mixed-methods pilot study providing a group of 20 hand therapy patients with weekly mindfulness meditations for four weeks. The primary goal of this pilot was to assess for feasibility of implementing a mindfulness-based intervention in the setting of hand therapy. We tracked patients’ pain and anxiety before and after the meditations. Also, we tracked patients’ engagement and adherence to treatment across the 4-week period. Each meditation demonstrated a statistically significant reduction in pain and anxiety with the strongest effect size resulting from using a 19-minute general mindfulness instructional audio recording in the first week. While repeated measures analysis showed time-based changes in pain catastrophizing and self-efficacy across 4 weeks. ❧ Individual semi-structured interviews were conducted with the 17 participants who stayed in the study past the 4-week intervention. Audio recordings of these interviews were transcribed verbatim. Using an iterative process of thematic coding we elucidated 5 themes surrounding participant experiences of recovery and 5 themes surrounding the experience of the mindfulness intervention. Emerging from the data, participants commonly navigated initial denial and despair after their injury into a process of hope and recovery. Participants noted the mindfulness meditations were useful in facilitating a positive mindset for therapeutic encounters with their hand therapist by eliciting a state of calm relaxation. ❧ Mindfulness-based interventions in hand therapy have proven to be acceptable to the large majority of patients while being feasible using a more scaled-back approach that fits within the setting. Also, there is preliminary evidence that mindfulness meditations reduce hand therapy patient anxiety before clinical visits and facilitates a positive mindset for recovery. Future development is warranted for a tailored mindfulness intervention in hand therapy leading to the implementation of an efficacy trial.
Long-term nursing home residents often lack activity engagement. For a population that is already frail, inactivity may result in further physical and cognitive decline. In an effort to mitigate functional decline and optimize quality of life, nursing homes are federally mandated to provide activities to residents. Despite the requirement for facilities to provide activity programs, little is known about the structure, development, and delivery of these sessions. Thus, this dissertation aimed to understand the current practice of engaging nursing home residents in activities. ❧ The first manuscript, intended to evaluate the scope and depth of activity sessions within a nursing home context. By extracting data from facility activity calendars, we examined the diversity of programming and the relationship with organizational-level characteristics. Descriptive statistics were used to quantify the frequency of each type of activity provided. Linear and logistic regression was also conducted to analyze an association between the organizational characteristics and the types of activities identified on the calendar. There was no statically significant relationship found between facility characteristics and activity types. However, the descriptive statistics identified a broad range of activities delivered. ❧ The second manuscript sought an in-depth understanding of how three purposely sampled facilities executed activity programs. This qualitative study comprised of semi-structured interviews with key nursing home stakeholders (i.e., administrators, activity providers, and residents) and facility observations. Four major themes were identified: (a) the organizational process that guide program development, (b) strategies for fostering engagement for newly admitted residents, (c) facilitating engagement during activity sessions, and (d) optimizing engagement outside of structured activity sessions. ❧ The aim of the third manuscript was to compare and contrast approaches for delivering activities in three purposively selected nursing homes to understand current practices to engaging residents in activities. Qualitative data from interviews and observations were obtained, compared, and contrasted across the three facilities. Types of activities were also quantified and evaluated for differences across the nursing homes. The facilities varied in the delivery of structured and unstructured activity programs, yet across facilities there were commonalities in types of activities offered. ❧ The cumulative findings of these three studies highlight the depth, breadth, and frequency of current activities provided as well as the divergent strategies used to execute facility programs. This scope of work addressed a gap in literature by providing an understanding of current practice which can help inform nursing home staff with strategies for delivering activity programming. Furthermore these findings can also be used to inform future policy efforts. Enhancing resident’s quality of life through activity engagement has been integrated into policy and practice however there is a need to deliver patient-centered programming.
The goal of this dissertation was to understand how autoimmune arthritis impacts young adults’ ability to participate and engage in daily activities. This research was designed to explore activity engagement from several angles using a mixed methods multi-phase design, which included three approaches to measuring activity quantitatively and two forms of qualitative analysis. In doing so, this dissertation explored two specific questions: (1) What does activity engagement look like for young adults with arthritis? and (2) What factors influence the decisions of young adults with arthritis to participate in chosen activities, which include both their mundane everyday activities and those that contribute to their wider biographical narrative? The results of this dissertation adds to current knowledge of how autoimmune arthritis impacts functional performance of meaningful activities, as well as how arthritis self-management interacts with everyday routines and life choices. Moreover, this research makes important contributions to the existing gap in research specific to young adults with chronic illness and provides a starting point for intervention development tailored to their clinical needs and lifestyle preferences.
The greatest proportion of spinal cord injuries (SCIs) occurring each year in the United States is among adolescents and young adults (AYAs). Disabilities resulting from neurological effects and secondary sequelae can contribute to diminished participation in meaningful activities within home and community settings and necessitate attention across the lifespan. Still, much of research and clinical care is organized for pediatric or adult populations, with limited attention to developmental processes situated in between. To this end, the overarching objective of this study was to explore daily life experiences after SCI for AYAs and their caregivers, with a specific focus on understanding interrelationships of injury effects, participation, identity, and development. A qualitative design was employed using narrative and phenomenological methods to capture a range of experiences — from mundane to extraordinary. Individuals were recruited from rehabilitation hospitals and community settings throughout Los Angeles County, and a diverse cohort of 17 participants enrolled: nine AYAs and eight of their caregivers. A multi-level analytic framework working within — and across — cases revealed ways in which experiences of participation were deeply situated within personal knowledge and beliefs, home and family life, community cultures, social and historical circumstances, and physical environments. Four primary, interrelated themes are presented: the significance of embodied experiences, multiple perspectives and caregiving, participation, and vulnerability. Some findings connect specifically to effects of SCI and secondary complications, while others have broader salience with development, disability, interpersonal relationships, and human experience. Across the life course, individuals come to know themselves and their environments through experiences. Adolescents and young adults are particularly charged with solidifying their identities and plotting goals for future roles and activities. Therefore, changes in abilities and activities during this time can have long-term effects. Perspectives of AYAs with a SCI and their caregivers exposed implications of existing gaps in knowledge as they contribute to participation, the structure and goals of rehabilitation services, and transitions to community life after SCI. Further research is indicated for development of rehabilitation services that attend to personal and developmental needs and expand beyond treatment of the individual to include interactions with caregivers and broader communities.
Introduction. Previous studies have shown that motor networks like the action observation network (AON) are related to action understanding and social perception. It has been proposed that this network is disrupted in individuals with autism spectrum disorder (ASD), however, contradictory results question this hypothesis. While many clinicians and researchers report motor deficits in ASD, few have looked at how motor skills may mediate activation in these networks. To isolate the role of motor and social skills in the AON, this dissertation aims to compare AON activation, connectivity, and structure in children and adolescents with ASD who have social and also motor deficits (ASDd), to two groups: children with motor but not social deficits (developmental coordination disorder; DCD), and typically developing (TD) children.
Methods. Children and adolescents with ASDd, DCD, and TD children underwent structural and functional magnetic resonance imaging (imitation task and resting state). Between-group differences, as well as relationships between activation and behavioral skills, were evaluated in the AON.
Results. A core region of the AON (the IFG) was found to be related to motor ability at all neurological levels. During the imitation task, both clinical groups showed reduced IFG activation compared to typical controls. At rest, only the ASD group had reduced bilateral IFG connectivity in the IFG. Structurally, the ASDd group displayed hypoconnectivity in the anterior body/posterior genu of the CC which may indicate poor homotopic white matter connections between the left and right IFG.
Conclusions. Generally, findings from this research provided evidence for disruption of the AON in ASDd. Moreover, we demonstrated that both social and motor skills are related to the AON at multiple neurological levels and, in some cases, motor impairments were more strongly related to the AON above and beyond social impairments. These findings suggest that motor impairments may be indicative of ASD pathology and may even underlie some of its core cognitive and behavioral features.
Chronic symptoms attributed to mild traumatic brain injury (mTBI) among military services members can disrupt engagement in important activities and life roles. In addition, service members with persistent sequelae after mTBI typically have comorbidities such as mental health diagnoses and chronic pain. Occupational therapy intervention for this population is not well described nor is there substantive evidence to support particular treatment strategies. The general goal of an occupational therapy intervention for military service members with mTBI is to improve their participation in daily life. Although participation is frequently described as an important outcome of rehabilitation interventions, it is not consistently defined or operationalized in practice.
This dissertation consists of two main studies. The purpose of the first study was to define a conceptual framework of participation for rehabilitation. The second study was aimed at developing a treatment model of occupational therapy intervention for military service members with chronic symptoms after mTBI. Prior to beginning these two dissertation studies, I conducted a pilot study, OT for TBI, in which I investigated the occupational needs of service members who receive occupational therapy services for chronic mTBI symptoms. The results of the two dissertation studies and a portion of the results from the pilot study are presented in the form of four manuscripts (Chapters 3, 4, 5, and 6), each of which is tailored to the audiences and formats of the targeted journals.
Chapter 3 (under review at Disability and Rehabilitation, co-authored with Dr. Mike Carlson) conveys the findings of the first study, which is an interpretive synthesis of the literature describing participation and related constructs as they relate to rehabilitation. Our analysis identified that participation consists of three essential dimensions, which we labeled (1) performance, (2) subjective experience, and (3) interpersonal connection. Furthermore, we found that although participation usually referred to community engagement, it was sometimes used to describe what patients do in the treatment setting. We characterized these two distinct contexts in which participation occurs as community-based and interventional. In both settings, participation is predicated by choice from among available opportunities. We created a conceptual framework to incorporate all of these elements and postulate relationships among them. A key finding of this study was that participation is not necessarily a positive or health promoting endeavor; its effects are individualized and context specific. This conceptual framework has several implications for rehabilitation practice, including the need for deeper investigation of clinicians’ and institutions’ roles in creating opportunities and choice within the interventional context.
Chapter 4 (under review at the American Journal of Occupational Therapy, co-authored with Christine E. Haines, Maria Devore, Karla Lepore, and Margaret Ryan) presents the results of the pilot study, OT for TBI, from the patient perspective. The findings are based on interviews with 12 military service members who had received occupational therapy services for chronic symptoms following mTBI. Service members identified needs in all areas of occupation, with a particular emphasis on sleep. Other important themes were also identified, including the significance of military culture in seeking healthcare and how individuals planned for the future outside of the military. The results demonstrate the need for comprehensive occupational therapy assessment and treatment in this patient population.
Chapter 5 (to be submitted to the American Journal of Occupational Therapy) summarizes the main findings of the second study, which aimed to establish a treatment model for occupational therapy intervention to optimize participation for military service members with chronic mTBI. This qualitative study employed a serial focus group model, in which a group of occupational therapy professionals (n=5) and a group of service member patients with mTBI (n=6) which met four times each to describe their experiences as providers and recipients of occupational therapy services, respectively. The resulting model is organized into treatment targets, active ingredients, and hypothesized mechanisms of action. This study establishes the groundwork for the development of a manualized intervention to be tested in a future efficacy study.
Chapter 6 (to be submitted to Military Medicine) imparts the unexpected findings that arose from the OT for TBI pilot study and the second dissertation study described above. The pilot study included clinicians from a variety of disciplines (n=14) and the dissertation study included only occupational therapy professionals (n=5). In discussing intervention approaches, clinicians across the two studies expressed differing views of the underlying causes of persistent symptoms that are attributed to mTBI. Specifically, some health professionals believed that symptoms resulted from a combination of structural brain damage from the injury event as well as trauma and related psychological causes. In contrast, others thought that all symptoms were attributable to mental health factors alone and that attributing them to structural injury perpetuated patient complaints. Some providers of both positions raised concerns about exaggerated or false symptom reporting for secondary gains, such as access to disability benefits. On the other hand, most of the patients who participated in the pilot study (n=12) and focus groups (n=6) did not attribute their ongoing symptoms to an earlier injury event until after they sought treatment, which was usually many months or years after problems had arisen. These findings raise numerous questions about the relationships between provider beliefs, patient expectations, and health-related outcomes.
The results of these studies have implications along two particular lines of research. First, the proposed conceptual framework of participation combines fundamental concepts from across the immense body of literature as it relates to rehabilitation. This framework may be a resource for both clinicians and researchers to improve patient care, satisfaction, and quality of life. Framing interventional participation as a distinct context has the potential to drive new research into clinician-patient interactions and their relationship to treatment outcomes. More work is needed to confirm the relationships in the model and ensure its completeness.
Second, the results of the focus group study provide solid foundation for future research and outcome measurement to support active duty military service members with chronic sequelae after mTBI. Additional work will be necessary to as well as to develop a comprehensive manualized occupational therapy intervention for service members with mTBI. Moreover, the conceptual framework of participation can be used jointly with the treatment model to ensure that all elements of participation are addressed in the intervention protocol. In the interim, the findings reported in this dissertation may prove useful to clinicians to guide patient goal setting and treatment planning.
The purpose of this dissertation study is to illuminate the needs and experiences of low-income Latina breast cancer survivors. Results suggest that participation restrictions are common in this population, and unmet supportive care needs are widespread. Meanwhile, low socioeconomic status and multimorbidity create barriers to accessing quality care. Patient-provider communication is often strained for low-income Latina breast cancer survivors seeking treatment within the public healthcare system, perhaps in part contributing to a preponderance of unmet information-related needs. Further research is needed to confirm and expand upon these results; however, data from this dissertation may be used to guide policymakers, healthcare providers, and patient advocates interested in improving oncology care for this population.
This dissertation research is a 12-month critical ethnographic study of the experiences of 12 bilingual Latino families of children with autism spectrum disorder living in Los Angeles County. Latino children in the United States experience disparities in autism diagnosis and services compared to White children, but little is known about how their families experience these disparities. The purpose of this study is to understand Latino parents’ experiences of their children’s autism services, which include treatments, interventions, and supports. The theoretical framework utilizes narrative phenomenology (Mattingly, 2010), a theory of practice that privileges parents’ emic perspectives, foregrounding the narrative shape and contingent nature of lived experience. Expanding upon narrative phenomenology, this dissertation critically examines discourses that shape parents’ occupational experiences related to their children’s autism services. Situated in a ‘critical moment’ in occupational science (Farias & Laliberte Rudman, 2016), this research views the sociocultural, political economic context that shapes parents’ experiences of their children’s autism services from the perspective of ‘life on the ground.’
The findings are presented in a ‘three-paper’ dissertation format, such that three distinct analyses are written as standalone, publication-ready manuscripts. The unifying thread throughout the three manuscripts is the work that parents did to obtain, maintain, and manage their children’s autism services, which is conceptualized as an over-arching, multi-faceted occupation of managing autism services. 1) “‘Doing Family’: Disparities, Opportunities, and Capabilities in Latino Families’ Experiences of Their Children’s Autism Services” utilizes an occupational analysis of family life to understand why Latino parents opted out of state-funded behavioral interventions for their children. A critical analysis revealed that parents opted out not because of a ‘cultural deficit,’ e.g., a lack of understanding of the potential benefits of the intervention, but because of a structural mismatch of services with the family’s occupational needs. The opportunity for behavior therapy did not enable the families’ capability (Sen, 1999) to ‘do family’ in a way that was meaningful to them. The findings show how the concepts of opportunity and capability can support the operationalization of occupational justice. To remedy situations of occupational injustice and reduce service disparities, opportunities, such as access to services, must be delivered in a way that enables individuals and families to convert them into capabilities. 2) “’You Have to Be Ready for Battle’: Latino Parents’ Experiences of their Children’s Autism Services in the Era of Austerity” situates Latino parents’ experiences with systems of care within an ‘autism parent’ discourse in which parents, usually mothers, ‘fight’ systems of care to ‘win’ services for their children. I argue that the ‘autism parent’ discourse is shaped by White, middle- and upper-class resources and capital, and that the discourse obscures the double standard that Latino parents face: They can fight for and possibly ‘win’ services but at great financial, emotional, and social cost; or they can choose not to fight to ensure that professionals will not mistreat their children in retaliation, but not ‘win’ the services they feel their children need and risk being labeled by professionals as unaware of their children’s needs. 3) “School Bus Stories: Understanding Latino Parents’ Concerns about the Safety and Independence of their Children with Autism Spectrum Disorder” examines Latino parents’ experiences related to their children’s public school transportation. Two bus stories, unrelated incidents in which children with autism in the study were ‘lost’ while under the care of their school district transportation departments, are presented as “theoretically critical cases” (Blatter, 2008). The bus stories represent two themes from the broader data corpus: The cost of parents’ broken trust when they feel their children are placed in unsafe situations by school district staff, and the tension parents experienced between their desires for their children’s independence and safety. I critically examine school district professionals’ emphasis on children’s ‘independence,’ which is used to deny their requests for services (e.g., a bus aide to assist the child). Findings reveal the need to address the independence and safety of individuals with autism while taking school or public transportation.
This research study focused on the narrative representations of the experiences of occupational therapy students who participated in a short-term immersion trip overseas as part of their final year in a professional master’s program. The literature on international educational opportunities for health and rehabilitation students and professionals has primarily examined the learning outcomes associated with such travels, including critical thinking, cultural sensitivity or communication and clinical skill development. To date there has been a reliance on single or pre-post interviews, questionnaire or survey designs to capture such outcomes. This study utilizes a different methodology to document and witness the experiences abroad by gathering data across nine months, in the planning, participation and reflection stages. Using a participant observation approach the researcher traveled alongside the participants to understand the role of time and space in the process of narrating stories of experiences. Narrative phenomenology and person-centered ethnographic approaches guided the research process, providing frames by which to closely explore individual experiences and how they become constituted by and with the socio-cultural realm.
One of the aims of this study was to unpack the interpretation and meaning of experiences that contribute to or challenge the reported claim that international sojourns are “life changing.” An overarching issue in this study was the complexity of situating subjective experiences into societal discourse. Understanding “culture,” constructing personal stories to fit into larger collective narratives, translating awareness into behavioral change and enacting a desire to “do good” were all themes that emerged from extensive narrative interviews, written artifacts, and participant observation. Implications for how the various findings may be translated into future occupational science scholarship are discussed throughout.
Background. Technology has been used successfully to enhance social engagement for individuals with Autism Spectrum Disorders (ASD), yet the majority of screen‐based media are sedentary and solitary activities. Young adults with ASD are at risk for overweight/obesity and sedentary behavior. Exergaming is an emerging physically active occupation that may benefit individuals with ASD who are often drawn to technology, and who may have limited opportunities for physical activity in the community. In pilot studies, subjects reported enjoying exergaming more than playing traditional seated videogames, and they consistently achieved moderate‐to‐vigorous physical activity levels while exergaming. Typically developing individuals tend to work harder and enjoy physical activities more when playing with a partner. However, individuals with ASD are known to have limitations in conventional social interaction skills.
Method. We measured the physiological and psychological responses of young adults with and without ASD to videogame play under varying conditions. We sought to describe the relationship of exergaming to physical activity levels in this group, and to determine if exergame playing condition (alone versus with a peer playing partner) influenced physical activity level and/or enjoyment. We used a two diagnostic group (ASD and neuro‐typical) by two playing status (alone and with partner) by three game type (boxing exergame, tennis exergame, traditional seated videogame) repeated‐measures crossover design with randomized conditions.
Results. Participants experienced high levels of enjoyment and perceived exertion while exergaming. For individuals on the Autism Spectrum, perceived exertion was mediated by enjoyment during partner play. That is, subjects on the Autism Spectrum reported significantly lower perceived exertion and greater enjoyment when playing the most physically challenging games with the greatest intensity, as measured by heart rate, energy expenditure, and activity counts.
Conclusion. For some young adults with ASD, exergaming with a partner contributes to greater enjoyment and higher‐intensity gameplay as compared to playing alone and playing TSVGs. Exergaming represents a cost‐effective, socially relevant, and accessible way to incorporate physical activity into the daily lives of young adults with Autism Spectrum, many of whom are at risk for sedentary lifestyle and overweight/obesity. Incorporating a social component into physical activities may further enhance the health‐promoting effects for individuals with ASD, who have previously been characterized as uninterested or unable to interact socially.
The aim of this research is to examine the experiences of fathers of children with disabilities as they engage in fathering occupations. Current research on fathers of children with disabilities focuses on stress, lacking an examination of what fathers are doing with their children and why they are doing it. This ethnographic study employs narrative phenomenology as both a theoretical lens and a research methodology, employing interviews and observations of five fathers who have a child with a disability. Major themes that emerged in father’s stories included descriptions of: (a) the construction of disability narratives, (b) transitions that influence the enactment of fatherhood, (c) the power of redemptive narratives, (d) and the experience of fathering occupations. Fathers’ communication with their children in the car is used to explore places of fathering occupations. Men’s investments in fathering occupations are explored through examination of a father feeding his daughter with a disability. Discussion includes implications for fathering research, the study of occupations, and family centered care.
For a person with a congenital disability, evidence indicates that the early life story of birth can be a resource for identity formation. Despite this, early life stories in general and birth stories in particular have rarely been studied or analyzed theoretically. In this research, the author analyzed birth stories told by 12 adults with spina bifida which were gathered during an original narrative study entitled Understanding the Life Experiences of Adults with Spina Bifida (Lawlor & Neville-Jan, 2003). The author’s interpretations were guided by narrative and thematic analysis. The author identified three emergent themes including a) creating coherence, b) resistance and desire, and c) creating meaning. Participants constructed and negotiated stories about their birth in a variety ways. One participant created coherence by blaming the medical profession, another by re-performing his birth through narrative. Several participants created meaning through metaphors, such as the body as a machine, beating the odds, and life and death; while others situated their stories within a spiritual framework.
It is indisputable that good oral health is important to both psychological and physiological health. However, despite the importance of oral care, disparities exist for children with special health care needs (CSHCNs) in the access to and practice of oral care in the United States, with oral care being the most frequently cited unmet health care need; one group of CSHCNs that may be at particular risk for poor oral health is children with autism spectrum disorders (ASD). The three studies in this dissertation aimed to investigate challenges encountered in children with ASD in regard to oral care and to examine if behavioral and physiological measures of sensory processing difficulties were related to difficulty with oral care.
In the first study we explored the differences between children with ASD and their typically developing (TD) peers in relation to aspects of oral care. Participants were 396 parents of children with ASD or typically developing children ages 2-18 years of age. Parents completed a 37-item questionnaire designed by authors to elicit information about oral care in the home and dental office. Significantly more parents of children with ASD in comparison to parents of typically developing children reported difficulty across almost all oral care variables explored, including oral care in the home, oral care at the dentist, and access to oral care. This study indicates that children with ASD experience greater difficulties and barriers to care in both the home and dental office settings than their typically developing peers.
In order to investigate the relationship between sensory sensitivities and oral care difficulties, we conducted study two. Participants included 396 parents of 2- to 18-year-old children with ASDs or TD who completed a questionnaire about oral care in the home and dental office. We found that (1) children with ASD vs. TD children were reported to have a significantly greater prevalence of sensory over-responsivity across all sensory domains, and (2) children with ASD characterized as “sensory over-responders” exhibited a significantly greater prevalence of oral care difficulty in the home and dental office vs. children with ASD who responded more typically to sensory stimuli (“sensory not over- responders”). This study provides further evidence for the impact of sensory processing problems on oral care, both in the home and dental office. Methods to best serve children with autism spectrum disorders may include strategies that alter the sensory characteristics of the dental environment as well as interventions to reduce children’s sensory sensitivities.
As the results of study two suggested that sensory processing difficulties are associated with difficulties with oral care on parent-report behavioral measures, the third study examined if there is a physiological difference between arousal and sensory responsivity in children with ASD and TD children during oral care, utilizing electrodermal activity collected during a routine dental cleaning. Additionally, it investigated what variables were related to electrodermal activity (e.g., diagnosis, parent-report of behavioral sensory processing difficulties, general anxiety, dental anxiety, uncooperative/distress behavior). Participants included 6- to 12-year-old children with ASD or TD children undergoing a routine dental cleaning (n=22 ASD, n=22 TD). Although we found no significant differences in the distribution of children with ASD and TD children into EDA responsivity groups (low-, mid-, and high-) at baseline, a trend towards higher EDA existed in children with ASD in all three EDA responsivity groups compared to the TD children. When comparing the ASD group with the TD group as a whole (not separated into responsivity groups), a significant difference was found between groups on EDA change score from baseline to dental cleaning, with children with ASD exhibiting an increase in EDA while TD children exhibited a decrease. This suggests that while children with ASD responded to dental cleaning with physiological stress and anxiety, TD children exhibited a decreased sympathetic response and habituation to the stimuli experienced during dental cleaning. Additionally, increased EDA during dental cleaning, suggesting increased physiological stress and anxiety, was correlated with dentist- and researcher-report of overt distress behavior during dental cleaning and parent-report of behavioral sensory processing difficulties in children with ASD.
Together, the results of these three studies enhance our knowledge of the experiences of children with ASD during oral care and provide a platform to encourage future research in regard to the relationship between sensory processing and oral care and support the development of innovative treatment techniques that will address the sensory characteristics of the dental experience.
Developmental dyspraxia is a disorder of impaired imitation and motor planning. Although believed to be of neurological origin, the neural correlates have not been investigated. One neural system believed to be essential to imitation is the human mirror neuron system. This work postulates that differences in the structure and function of the mirror neuron system may underlie imitation and motor planning impairments, or developmental dyspraxia. First, the current work explored function in the mirror neuron system by comparing brain activity in a group with developmental dyspraxia to a typically developing group using functional magnetic resonance imaging. Second, microanatomical properties of the structural connections between nodes of the mirror neuron system were explored using diffusion tensor imaging. Third, thickness of the cortical gray matter in mirror neuron system regions was measured and compared to imitation skill. Finally, a model is postulated to explain how all of these neural properties may relate to one another and suggestions for future research and implications for treatment are discussed. The current work is the first to comprehensively address, in an hypothesis-driven manner, multiple structural and functional neural components of the mirror neuron system that may underlie developmental dyspraxia.
Our experiences shape who we are. They affect everything that we say, do, and think, at both conscious and subconscious levels. It is no surprise that our experiences affect how we interact with others — what we perceive, whether we understand or empathize with one another. This thesis explores how experience modulates neural regions involved in both motor function and social cognition. In particular, it examines the putative human mirror neuron system, a network of premotor and parietal brain regions that are active both when performing and observing actions, and how these regions are engaged when observing new, unfamiliar or impossible actions. Furthermore, this work explores how different types of experience modulate activity in these networks, along with other networks engaged in social cognitive processes, such as perspective taking. The overarching aim of this thesis is to understand how we make sense of actions that are beyond our own abilities and how our everyday experiences shape our neural responses.
Research related to the implementation of California’s Mental Health Services Act (MHSA) Full-Service Partnerships has focused on outcomes, cost effectiveness and more recently system transformation. Despite Workforce Training and Education being a key component of the MHSA, there is little understanding about the practice reasoning of personal service coordinators as they engage in their day-to-day practices. This study used participant-observation, document review and narratively focused post practitioner-client visit observation and intensive interviews to explore the practice reasoning of personal service coordinators working in three adult full-service partnerships operated by a single agency. The interviews focused on what the practitioners were paying attention to, thinking about and what influenced their decisions about the actions they took. Data was analyzed through a thematic analysis informed by phenomenological and hermeneutical perspectives. Findings showed that practitioners drew on situated knowledge emergent in their day to day experiences with clients, as well as the agency’s stages of recovery informed guiding principles and philosophy to guide their actions. Dilemmas emergent in the practitioners reasoning frames were also identified.
This qualitative research utilizes narrative as a way to explore the experiences of five gay men living with HIV. Their membership in this marginalized group presents particular challenges to engagement in meaningful activities or occupations. The innovative methodology known as portraiture is used, drawing on phenomenological and ethnographic foundations. This method joins the empirical and the aesthetic; creating a narrative that brings together the careful description of good ethnography with the evocative resonance of fine literature. The interviews and participant observations in the study are guided by portraiture; while the additional lenses of narrative and experience contribute to the thematic analysis. Through these complementary approaches, a narrative portrait of each man is created and emergent themes are presented. These themes include uncertainty with medications and side effects which serve as constant reminders of their HIV status. Their narratives include a rich diversity in self understandings deeply intertwined in their coming out as gay, the awareness of their HIV status, and their experiences of their body. The development of multiple identities is an ongoing process that is situated in a larger context of social relatedness. The men search for ways to make sense of the death of friends, fears of their own sickness and death, and their possible future lives with HIV. These experiences of loss are expressed, negotiated, and narrated through the appropriation of metaphors and engagement in social action. The use of narrative itself, becomes a cultural resource for these men. The importance of aesthetic representations and the power of performance is emphasized through a microanalysis of a particular concert experience. The intersections of portraiture, narrative and engagement provide a deeper understanding of the complexity of the lived experiences of these men.
The practice of spirituality is believed to be an essential and powerful force in the lives of African Americans. The breadth of its influence in daily life has been observed in nearly every aspect of the African American experience. Perhaps for this reason interest in understanding African American spirituality has not waned over the years, but in fact has persisted and grown stronger. Despite the clear indication that spiritual practices play a significant role in the African American female experience, the exploration of the lives of African American women has been neglected (Jones & Shorter-Gooden, 2003) and this neglect has extended to research on spirituality (Cannon, 1993; Mattis & Jagers, 2001). The purpose of this dissertation was to reveal the perception of spiritual experiences and practices in daily life and its relationship to the well-being of African American women. This dissertation addressed a single organizing question: What is the nature of the relationship between spirituality and well-being in a sample of African American women as perceived in daily life?
The most recent research on African American female spirituality (Frederick, 2003; Hull, 2001; Mattis, 2000, 2002; Ryan, 2005) has suggested that for some African American women, spirituality could be located in daily experience as religious, social, psychological, and physical phenomena. Furthermore, this research suggested that the link between spirituality and well-being was influenced by the complex interactions of religious, social, psychological, and physical elements of daily experience (Mattis, 2002; Ryan, 2005). Thus, this dissertation’s empiricism was based on a qualitative research approach. Four African American women agreed to participate and each was interviewed twice. Two of the four were then selected to continue with additional interviews and observations. Narrative configuration was used to organize the data as storied accounts of the participant’s perceptions of spirituality. Working from the storied accounts, thematic narrative analysis was used to apprehend spirituality/well-being themes.
Several key findings emerged. First, the narrative data revealed as a dominant plot line a relationship between spirituality and well-being. Second, spirituality was fundamentally defined by a relationship with the divine that was experienced as “real.” A “real” relationship with the divine afforded emotional well-being through the elevation of positive emotion (peace, comfort, assurance, confidence, and the like) and the alleviation of negative emotions (fear, pain, and worry). Additionally, a relationship with the divine was characterized by a set of expectations that fostered experiences of hope and altruism. Third, the ability to modify personal theology related either positively or negatively to well-being. Fourth, the participants described integrated ways of knowing that guided the perception of choices and possible well-being outcomes. Fifth, the participants evaluated well-being outcomes through a process that reckoned with potential loss and gains. Sixth, spiritual practices were fundamentally concerned with alignment of the self to expectations of the divine relationship. Seventh, the interaction of the divine/human relationship with other domains suggested an underlying reasoning that linked spirituality to well-being. Specifically, the analysis suggested the possibility that the participants use spiritual narrative reasoning to organize aspects of spiritual experience as lived in daily life. Finally, the proposed view of the relationship between the perception of spirituality and well-being as mediated by spiritual narrative reasoning offers occupational scientists who are interested in the well-being of African American women insight into the process in which spirituality relates to well-being.
The purpose of this dissertation was to examine how a subset of 22 participants from the Well Elderly 2 Study (WE2) sample viewed the impact of the WE2 intervention and the relationships between several study constructs. A second objective was to confirm the WE2 intent-to-treat and structural equation modeling findings at the level of participants’ perceptions, and reveal additional constructs and relationships not hypothesized in WE2.
Quantitative methods were used to generate a sample comprised of 22 WE2 participants, based on the principle of maximum variation. Next, qualitative data were collected, consisting of semi-structured interviews and reflexive fieldnotes. These data were condensed into thumbnail sketches of the 22 participants, organized by study constructs and other background information. The 22 thumbnail sketches show, in highly individual and nuanced ways, how the WE2 participants construed the effects of the intervention, and illustrate the participants’ individual perspectives on the relationships between the different constructs studied. Brief sketches of the research settings were also generated.
In Study 1, modified analytic induction was used to analyze the qualitative data. Findings were compared to WE2 intent-to-treat findings regarding the impact of the intervention, and structural equation modeling findings regarding the mechanisms through which change occurred.
For Study 2, graphical models were generated to represent how the participants perceived the relationships among psychosocial and health-related constructs, irrespective of the intervention.
The results of Study 1 indicate that participants believed the intervention most improved their social support and healthy activity, followed by physical health, psychosocial well-being, and cognitive functioning. In addition, several themes emerged that suggested areas of intervention impact that had not been anticipated in the original study. Overall, participant perceptions were relatively uniform, with only a few individual differences in perceived impact identified.
The results of Study 2 indicate that in general, the links among mediators and outcomes that were hypothesized in WE2 were supported through the qualitative data analysis. However, certain departures from the model were detected, with nine unanticipated constructs or factors emerging (Death/Dying, Transportation, “Slipping,” Routine, Disability, Taking Risks, Communication, Fear of Relocation to a Nursing Home, and Alcoholics Anonymous). Healthy activity was given centrality in most of the models.
Overall, the findings of this dissertation support the WE2 intent-to-treat findings and partially support the structural equation modeling results, with a few deviations and unexpected findings. The results of the two studies comprising this dissertation indicate that the participants perceived that the intervention impacted healthy activity, social support/social networks, perceived control, stress, perceived physical health, psychosocial well-being, and cognitive functioning. In addition, some participants indicated that positive changes in healthy activity, social support/social networks, perceived control, and stress, in turn, led to improvements in perceived physical health, psychosocial well-being, and cognitive functioning. The key differences between these qualitative findings regarding the intervention and quantitative findings from WE2 are that: (a) in WE2, the intervention was not shown to impact social support or perceived control; and (b) in WE2, cognitive functioning was not determined to be influenced by the intervention or the psychosocial constructs included in the study’s conceptual model.
Previous studies have demonstrated that social support affects older adults’ functional recovery, depression, and quality of life after stroke in rehabilitation programs. Filial piety, in term, is a special type of social support in Chinese culture that older Chinese adults need and value, particularly after they experience a stroke. Due to the scarcity of existing studies on this topic and the pivotal role filial piety may play in stroke outcome, it is important to undertake the study.
In this study, five domains of expected filial piety were first identified through qualitative analysis of semi-structured interview data: emotional, physical, economic, informational, and spiritual domain. Each domain was further subdivided into components indicating specific types of expected filial behaviors or attitudes as given by the informants.
In addition, a total of 30 items for EFP and SFP were created based on the findings described above. Both scales demonstrated sufficient reliability and appropriate content validity. However, acceptable convergent construct validity was established only for the EFP. Factor analysis was also performed on the EFP and SFP. The result indicated, when compared to original-designed factor structure, the EFP demonstrated better construct validity than the SFP.
Finally, at approximately one month post stroke, it was found that the expectation level of filial piety in the physical domain was significantly and negatively associated with overall health-related quality of life and its physical and mental dimensions. Moreover, a significantly negative association was found between filial expectation in the spiritual domain and health-related quality of life in mental dimension. No significant association was found between overall satisfaction of filial piety or any of its subscales scores and any of the outcomes. However, the interaction terms of EFP by SFP indicated that satisfaction moderated the effect of expectation on depression and on the health-related quality of life. Furthermore, a measurement flaw was discovered which suggested the need for alternative ways to evaluate satisfaction of filial piety, such as assessing filial discrepancy and frequency in the future research. The difference between SFP and EFP scores was computed as a measure of filial discrepancy. Although the findings indicated the same relationships could be detected between filial discrepancy and the outcomes as had been revealed for filial expectations and the outcomes, in this case these relationships were in the opposite direction.
Weight management problems pose a grave threat to the health and well-being of adults with serious mental illness. In fact, overweight and obesity rates for this population are estimated to be up to twice that of the general populace. Despite the urgent need to address this issue, few studies have been undertaken to develop effective interventions tailored to the specific life circumstances implicated in the poor weight management of this group.
The present study constituted a first step for the future development of an intervention designed to enable better weight management in adults with serious mental illness. Using an overarching disability studies conceptual framework, I employed qualitative research methods to discern the complexity of life circumstances and factors that influenced weight management difficulties for these individuals. I reasoned that by developing a detailed understanding of the particular dilemmas these adults had in managing their weight in everyday life, I would subsequently be able to develop an effective intervention approach. Fourteen participants engaged in focus group interviews with a subset of four participants taking part in individual semi-structured interviews and activity visits. On the basis of data generated, four overarching domains of concern related to weight management emerged, including: (a) addressing physical health issues, (b) maintaining psychological well-being and managing stigma, (c) engaging in valued activities and connecting with others, and (d) providing for everyday needs. Additionally, eleven interrelated subdomains were identified through which the problem areas could be redressed.
This four-pronged typology with its associated subdomains provides a data-driven conceptual foundation for the future development of a Lifestyle Redesign® weight management intervention for adults with serious mental illness. The findings revealed that macro-level sociopolitical and socioeconomic factors permeated the weight management experiences of this population. As such, it became clear that the intervention approach to be developed must incorporate system change strategies relative to the lifestyle domains that comprised the typology.
Diabetes management, which benefits from a high degree of predictability and routine, is particularly challenging in young adulthood, a developmental period characterized by exploration, experimentation, and risk-taking. These age-appropriate behaviors may contribute to the poor health outcomes of young adults with diabetes, which include substantially elevated rates of diabetic complications and mortality. Because it falls outside the primary area of focus for both pediatric and adult care practitioners and researchers, there is limited information on how best to provide developmentally appropriate care to young adults with diabetes.
The purpose of this study was to develop an in-depth understanding of the experiences of young adults with diabetes, with a particular focus on how their engagement in occupation influences (either positively or negatively) their ability to successfully manage diabetes, and likewise how their diabetes management strategies shape their participation in occupation.
The study participants were eight young adults ranging in age from 19-25 years with type 1 diabetes. Each participant completed a series of eight semi-structured interviews examining their habits and daily routines; occupational participation; theories, strategies, and dilemmas related to diabetes care; relationships within physical and social environments; and other factors which they felt influenced diabetes management in their everyday lives. A thematic analytic approach was used to examine data across the eight cases and develop themes that characterized the experiences of the participants’ engagement in occupation and diabetes management.
The results are presented via three journal articles (Chapters 3, 4, and 5) that have been developed to present the essential findings of the study to a range of audiences.
Chapter 3 (in press at the American Journal of Occupational Therapy) presents seven themes characterizing the relationship between participants’ occupational engagement and diabetes care, including (a) emotional reactions to diabetes; (b) negotiating unanticipated events; (c) embodied knowledge of diabetes; (d) healthcare access and satisfaction; (e) shifting physical contexts; (f) social support, sensitivity, and stigma; and (g) schedules, routines, and special events. These themes illustrate the tension young adults experience between participating in desired occupations and attending to the complex factors that dictate successful diabetes care, and offer a framework for occupational therapists to assist young adults in reconciling these competing demands.
Chapter 4 (under review at Diabetes Care) presents five themes that influenced participants who made decisions that did not adhere to agreed-upon treatment recommendations for diabetes care, including (a) misleading healthcare providers; (b) adhering to alternative standards; (c) treatment fatigue and burnout; (d) social support problems; and (e) emotions, confidence, and self-efficacy. A combination of these factors was at play in participants’ non-adherent decision making, which was sometimes, but not always, associated with poor control of diabetes.
Chapter 5 (in press at OTJR: Occupation, Participation, and Health) provides an overview of current behavioral interventions for diabetes management and systematically reviews the available literature on occupational therapy and diabetes care. Only four studies could be located in the literature describing occupational therapy interventions for diabetes management, none of which made maximal use of strategies thought to enhance the long-term effectiveness of behavioral interventions. The chapter concludes with suggestions for developing a diabetes management intervention based on occupational science principles that capitalizes on the unique skill set of occupational therapists.
In conclusion, young people make calculated decisions about how best to balance their diabetes self-management with competing goals and priorities in their everyday lives. At times this leads to the subjugation of diabetes care in favor of participation in occupations they perceive as being incompatible with their diabetes self-management regimen. At other times it leads young people to develop creative strategies, which may depart from the agreed-upon recommendations of healthcare providers, to optimize both their diabetes care and their ability to engage in occupations they find meaningful and valuable. The findings of this study contribute to a growing body of occupational science and occupational therapy literature suggesting that a reconceptualization of the relationship between occupation and health is warranted.
Background. One of the most intimate aspects of mothering is feeding a child. A change occurs in mothering occupations when a gastrostomy tube is placed in a child and the methods of feeding are altered. Frequently mothers feel as if they have failed when their children receive a gastrostomy tube. The majority of literature regarding children with g-tubes comes from a bio-medical perspective, focusing on the medical and technology aspects of a g-tube. Limited information can be found in the literature regarding the socio-cultural dimensions, mothering, and mother-child interactional aspects of parenting a child with a g-tube. This research proposes to fill a gap in the current literature surrounding mothering, feeding, and gastrostomies.
Purpose. To explore mothers’ experiences of feeding and caring for children with a gastrostomy tube.
Methods. The study involved narrative and thematic analysis of interview data collected during in-depth narrative interviewing of seven mothers of children who were primarily fed through gastrostomy tubes.
Results. Mothers revealed the complexities inherent in caring for a child with a gastrostomy tube. Through their stories, mothers expressed the gains and unanticipated challenges after the placement of a gastrostomy tube and new ways of thinking about mothering in the context of chronic illness. Unique dimensions of mothering as related to caring for a child with a g-tube were discovered.
Conclusions. For all of the children and families, the g-tube was situated within a context of illness and fragility. The experiences with feeding the children by their g-tubes impacted the mothers’ daily occupations and relationships with their children. The g-tube and associated occupations were what mothers and children were dealing with on an everyday basis. However, the illness story behind the g-tube was what had shaped its daily meaning. The g-tube was required for these children to receive calories and was a central part of their daily lives, but the families’ stories also reflected that they were in a broader community of chronic illness and other health care needs. The mothers and children in my study were not able to firmly be situated in any one discourse, but instead crossed into areas of feeding, chronic illness, technology dependency, and mothering. The g-tube was very much its own entity that was easy to see, identify and had its own set of associated technical procedures. However, in the actual lives of the mothers and children the g-tube was a complicated embedded phenomenon that could be perceived to possibly have more to do with mothering than about feeding.
This study investigated the relationship between autonomic reactivity and behavioral responses to auditory stimulation in 22 high-functioning children with autism (AD) and twenty typically-developing children (TD). A primary purpose was to examine whether the AD and TD groups differed with respect to autonomic activity at rest and following auditory stimulation. An additional purpose was to investigate whether the severity of behavioral difficulties with auditory stimuli in everyday life, as reported by parents, was associated with electrodermal responses to auditory stimuli presented in a controlled laboratory setting. Electrodermal activity (EDA) was measured at rest and in response to two auditory stimuli, a tone and a siren, using the Sensory Challenge Protocol. Behavioral difficulties were measured with the Sensory Processing Measure (SPM) Home Form. T-tests were applied to EDA variables to detect differences between the two study groups. Confounding effects of gender, age, and ethnicity on EDA findings were also analyzed. Associations between EDA measures and SPM scores were determined using Pearson correlation procedures.
Results showed that the AD group had higher resting EDA levels and stronger EDA reactivity to auditory stimuli than the TD group. These findings suggest that the children with autism generally had higher arousal levels and were more physiologically reactive to auditory stimuli than the typically-developing children. Parent responses on the SPM Home Form showed that 90% of the participants with autism had behavioral difficulties with auditory stimuli in naturally occurring situations. Correlations between EDA and SPM measures indicated that more severe behavioral difficulties with auditory stimuli were associated with higher arousal levels and stronger physiological reactions to auditory stimuli. Overall, results suggested that high arousal levels may underlie some behavioral problems that children with autism experience in reaction to auditory stimuli in natural environments.
Children with autism spectrum disorders (ASD) often exhibit differences in their eating and mealtime behaviors. Feeding children is an important part of mothering and therefore, differences with eating and mealtime behaviors can significantly impact a mother’s experiences and perspectives. Surprisingly little has been written about the intersections of mothering, mealtime and ASD. In answer to this significant gap, this study used narratively focused interviews to examine the perspectives of five mothers of pre-school aged boys with autism and feeding difficulties. The interviews focused on their experiences around mealtime and mothering a child with a feeding difficulty. Data was analyzed using thematic analysis and narrative methodology from an occupational science perspective. Findings show that eating difficulties impact much more than just nutritional status of these children. The entire occupational life of the families is affected. Mothers‘ theories about how to mother their children and priorities for intervention are also revealed.
Performers with disabilities in the entertainment industry in Southern California have been working together as a cohesive force for change, challenging deeply embedded cultural ideals of beauty and bodily perfection. This study is based on interviews with a cohort of adults with disabilities employed in film and television. Their narratives suggest that some occupations are transformative, in the sense of providing an overriding meaning and purpose in the life of these individuals and their community. For the participants in this study, acting — or performance, more generally — is a transformative occupation. Interviews with performers with disabilities show the dedication, persistence, adaptiveness and creativity that such a valued transformative occupation will inspire. The findings from this study provide evidence of the potential for transformative occupations to changes people’s lives while also transforming society. This study examines six key strategies that performers with disability use to navigate the complex landscape of Hollywood to ensure that they continue performing. The strategies are: Peer connection and community building, performing vitality, disability disavowal, repertoire of responses to discriminatory encounters, creating touchstones of support, and professional diversification. Performers with disabilities must really love what they do, if they persist in confronting the many barriers to participation in the film and television industry. They consequently face a dilemma: How do they balance their desire for success in television and film with the imperative to challenge — and possibly reject — roles that portray people with disabilities in a stereotypical, negative manner. As with other minorities seeking rights, they fear gaining reputations as troublemakers if they refuse roles or request reasonable accommodations at auditions or on set. This study examines, then, not only the enabling strategies but also the tensions characterizing the community of actors with disabilities in a highly competitive industry.
Background. The lifetime incidence of pressure ulcers among individuals with spinal cord injury (SCI) exceeds 90%; such wounds are contributing factors to the deaths of more than 7% of spinal cord injured individuals. As many of the known risk factors for pressure ulcer development are arguably habit-based, a deeper understanding of the nature of habit and its role in pressure ulcer development could have significant implications for rehabilitation practice. Complex systems theory provides an ideal language for developing a conceptual framework for understanding habit, as complex systems theory and the notion of habit as understood in a broad sense are both concerned with understanding the emergence of regular, patterned activity.
Purpose. To explore how habits impact the development of pressure ulcers in people with spinal cord injury.
Methods. The study will involve an in-depth case study based on secondary analysis of interview data collected during an ethnographic study of community dwelling adults with spinal cord injury. Data were coded for the presence of habits; relationships, influences and interactions among these habits; areas of stability and chaos; and events impacting on levels of stability and chaos.
Results. The participants’ daily lives included a number of habits that contributed both directly and indirectly to the development of medically significant pressure ulcers.
Conclusions. Current rehabilitation practices frequently follow an educational model premised on the belief that increasing a patient’s knowledge and enhancing motivation will result in behavior change. Recent research into the role of habit in shaping human behavior challenges this assumption. Based on the findings of this study, pressure ulcer prevention programs should be re-conceptualized as attempts to alter habits.
Objective. This study is the first to examine the transactional nature of occupation and environment and its links to perceived health through place integration for older adults newly relocating to a nursing facility.
Methods. Using a non-experimental repeated measures design, older adults answered a questionnaire battery that addressed occupation, physical and social environmental climate, social networks, and perceived health during their first month (n=94) and second month (n=50) of residing in a nursing facility. Outcomes were compared during the first month, second month, and change from first to second month.
Results. During the first month, a positive association was found between perceived physical health and a resident’s engagement in importantly defined self-care occupations (p=0.004) and ability to perform self-care occupations (p=0.0003), while negatively associated with his or her engagement in importantly defined social occupations (p=0.001), self-disclosure (p=0.04), and frequency of visitations of close family and friends (p=0.02). Perceived mental health was found to be positively associated with environmental cohesion (p=0.03). At the second month, perceived physical health was negatively related with a resident’s engagement in importantly defined play/leisure occupations (p=0.002) and ability to perform play/leisure occupations (p=0.02). Perceived mental health was found to have a positive association with a resident’s engagement in importantly defined social occupations (p=0.004) and ability to perform social occupations (p=0.0002). In the change from the first month to the second month, perceived physical health was negatively associated with a resident’s engagement in importantly defined play/leisure occupations (p=0.006) and the ability to perform play/leisure occupations (p=0.02). Finally, perceived mental health was positively related to a resident’s ability to engage in social occupations (p=0.007).
Conclusion. Engagement in a higher number of importantly defined occupations did not always yield a positive relationship to perceived health. Similarly, having a greater ability to perform certain types of occupations did not always predict perceived health. Findings of this study underscore the important dynamic of how different types of occupation and its transaction with various aspects of the physical and social environment relate to positive and negative changes in perceived health for older adults newly residing in nursing facilities.
The discipline of occupational science was founded in response to the need for the explication of the form, function and meaning of occupation (the day to day activities that make up our lives). As a working assumption of occupational science, our daily occupations are imbued with personal meanings that contribute to the perception of purpose and meaning in our lives, ultimately influencing our health and well-being. Further, meaningful activity participation holds a central place in contemporary models and theories in social gerontology. Despite the importance of meaningful activity participation, no instrument exists which has been shown to validly tap the richness of this key construct. The present study addresses the development and validation of the Meaningful Activity Participation Assessment (MAPA), which is intended as a measure this vital conceptual domain.
The study began by utilizing focus groups and the input of the University of Southern California Well Elderly II research team to derive the 28-item MAPA. Data analyses were liberal in exploring the many facets of the MAPA scales, including tests of six main study hypotheses utilizing a sample of 154 older adults: 1) Among community dwelling older adults there is a positive correlation between the MAPA and the Purpose-in-Life test; 2) Among community dwelling older adults there are positive associations between the MAPA scales and other scales of meaningful activity participation; 3) Among community dwelling older adults there are positive correlations between the MAPA and two measures of life satisfaction (i.e., LSI-Z and SWLS); 4) Among community dwelling older adults there is a positive correlation between the MAPA and the four SF-36v2 Mental Health scales; 5) Among community dwelling older adults there is a positive correlation between the MAPA and the four SF-36v2 Physical Health scales; and 6) Among community dwelling older adults there is a negative correlation between the MAPA and the CES-D.
Results from the statistical tests of these hypotheses were intended to provide construct validity evidence for the MAPA. Zero-order correlation, multiple regression analysis, principal component analysis, cluster analysis, and a tentative causal model were employed as tests of the construct validity of the MAPA.
The results of these analysis offered nearly unequivocal support for the construct validity of the MAPA. Each of the study’s main hypotheses was partially or fully supported, as the MAPA achieved statistically significant theoretically anticipated zero-order correlations with criterion measures. The MAPA was also found to hold adequate test-retest and internal consistency reliability. Additionally, in multiple regression models, the MAPA contributed to the prediction of every psychological well-being indicator, and all but one measure of health-related quality of life. Results of the cluster analysis found three clusters for which the members were found to have low, medium or high MAPA scores respectively. Profiles of these clusters discerned that, in general, low MAPA scores were associated with lesser psychological well-being and health-related quality of life. Results of the causal model were mixed, though the MAPA was found to contribute directly to the Purpose-in-Life test, whereas, together the MAPA and Purpose-in-Life test predicted the mental health component of version 2 of the SF-36v2 Health Survey.
Discussion of the study findings related to the significance of the MAPA as a reliable and valid measure of meaningful activity participation, in addition to the potential role the MAPA could serve in informing contemporary life-span theories of aging. Future research suggestions included the need for continued validation studies of the MAPA, including larger more representative samples, as well as longitudinal and experimental designs to consider the nature of change in the personal meaning of activities in older adults.
This ethnographic study was conducted to better understand the roles and process of hope and occupation in the lives of adults with schizophrenia. During the course of several months, I conducted semi-structured interviews and participant observations with three men who had schizophrenia. I found that these three men distanced themselves from labeling associated with schizophrenia, preferring to be associated with their work and leisure occupations. They each had what some others in their lives considered to be high hopes. These hopes both shaped and were shaped by the occupations in which they engaged. In the face of criticism, each of them continued to pursue their hopes and revise them as necessary when they encountered obstacles. Despite debates in the hope literature about “false hopes,” clients with schizophrenia would be better served by trying to understand their hopes, and helping them in the process of revising them and trying to attain them.
Objective. The aim of this dissertation is to understand the lived experiences and personal meaning of four Taiwanese immigrant families with children who have a disability and are living in the United States. Currently, there is a limited understanding of these experiences. My dissertation explores the full range of details of daily life and family history of the occupation of parenting from a cross-cultural perspective within the discipline of occupational science.
Method. There were four theoretical frameworks used in developing this research: occupational science, the social model of disability, ecocultural theory, and the phenomenology perspective. Strategies from phenomenology and grounded theory were chosen to design and conduct the research. In-depth interviews, participant observations and document reviews were used in the data collection. All interviews were audiotaped, transcribed and translated. A thematic coding method based on grounded theory was chosen to analyze data. Strategies to increase trustworthiness were implemented.
Result. Three major themes emerged from the data. They were: living with societal prejudice, managing everyday life, and constructing a better future. The finding showed that inaccessible environments and societal prejudice contributed to the family dysfunction and restricted parents from fully engaging in their roles. Even though parents encountered numerous challenges in their adopted country, they developed their own solutions through making extra effort, asking help from family members, negotiating with institutions, and using resources from family support groups, local agencies, and their faith community. Mothers shared their new understandings of meaning in their lives. Lastly, parents in my study described their ideal world for people with disability.
Conclusion. This study not only captures the parents’ reflections on their present circumstances, but also reveals what the four families in my study thought about their past and future. Due to their own resilient abilities, the families in my study became expert caregivers in their adopted country. They provided opinions and suggestions about community settings, transition programs, and education about disability for nondisabled people in both Taiwan and the United States. The contribution of the study to the literature and directions for future and ongoing research topics are also discussed.
This one-year longitudinal study examined a stroke survivor’s experiences during the first year of her recovery, to specifically address the importance and meaning of activities in defining recovery, and the process of recovery over time. Re-establishment of participation in daily activities in the natural context is often viewed as the goal of rehabilitation interventions, and reflective of a more holistic perspective on health. Research on stroke recovery from survivors’ perspectives suggests that engagement in occupation — experiences in meaningful, purposeful, everyday activities — plays a substantial role in an individual’s perception of recovery from a disabling condition, as well as in the process of recovery. The purpose of this study was to better understand the relationship between occupation and an individual’s experience of recovery after stroke, both in terms of her definition of recovery and in the transitions of the recovery process.
Qualitative methods were used to gather and analyze detailed information about an individual stroke survivor’s recovery experience and process, from acute in-patient rehabilitation and continuing throughout the first year following her stroke. Her recovery experience was explored via review of rehabilitation documentation; in-depth interviews with the stroke survivor and her rehabilitation team, caregivers, family members and friends; and observation of her daily activities in the natural context over the course of the first year following her stroke. Data were then analyzed using qualitative methods resulting in a single case history: a story of the survivor’s first year of stroke recovery. Particular attention was given to her experience of recovery and the contextualized changes in her activity participation over time.
The survivor’s story highlighted the potentially profound emotional impact a stroke may have, and the need to more directly address the emotional consequences of stroke in the provision of health care services. Scenarios within the survivor’s story were also analyzed in relation to the World Health Organization’s (2001) International Classification of Functioning, Disability and Health (ICF). In particular, the interrelationships between ICF categories are presented with respect to circumstances surrounding the event of the stroke itself as well as the survivor’s sleep patterns following the stroke. Implications for rehabilitation are discussed.
This ethnographic study used qualitative methods to explore the meaning of toys and other objects from the perspective of young, typically-developing, children in social, culturally specific context of one childcare site, located on the campus and serving employees of a large, university-affiliated medical center in Southern California. The study’s primary unit of analysis was the intersection of child, object, and the social and physical contexts of interaction. Data were collected over the course of nearly six months, and by methods including on-site participant observation, limited audio recording, and extensive video recording in the participants’ classroom and the large outdoor playground, that together comprised the physical and material contexts for the enrolled children’s daily routines.
Research participants included a total of 26 ethnically diverse children enrolled in a single classroom of the center, with five of those children identified as primary research informants. At least one parent of each enrolled child was also enrolled in the study, as were selected childcare center administrators and classroom teachers. Additional data were comprised of audio-recorded interviews with parents of the five primary informant children, the childcare center’s director, and the classroom teachers. In conjunction with selected literature, data gathered from adults served to triangulate the study’s findings, as the voices and actions of the children themselves remained central throughout the process of interpretation. This paper presents both broad and fine-grained analysis of the study data.
Toys are a part of the culture of early childhood, and young children themselves capably share their great expertise about that culture. The study suggests that, from the perspective of young children themselves, play with toys and other objects is a quotidian, yet seriously important part of all daily routines and occupations. Toy play serves as a key locus for making meaning of the world around them and their place in it. For young children not yet fully capable of complex verbal communication and cultural understanding, familiar and beloved objects achieve meaning out of proportion to the objects themselves, in the context of everyday, social engagement.
The meaning of objects is located not in the objects themselves, but as they are activated, or made real by children in sociocultural, physical/material, and temporal contexts. Toys serve both to illuminate culturally invested meaning and provide the means with which to imaginatively and actively contest and transform meaning. In social context, toys bridge literal and metaphoric communicative gaps, alternately inviting and buffering social interaction. Toys achieve agency of their own to become real, participatory social actors in fluid, contested narratives. Toys and other objects help children bridge the gap between inner, solitary and outer, social worlds. And finally, toys bridge distances between the safety of home and family, and the larger world, including daycare, that is a feature of life in the 21st century for a majority of young children in the western world.
The purpose of this qualitative study is to examine the role of occupations on recovery from a life crisis. I am especially concerned with a person’s subjective experiences of occupations in relationship to healing. As my data source, I have drawn from the contemporary Japanese novel, The Wind-Up Bird Chronicle written by Haruki Murakami, because of its ability to present a complex portrait of human life in crisis. My analysis centers on a combination of narrative, phenomenological, and historical elements to uncover each character’s unique trajectory.
Using analysis through comparison of each characters’ trajectory of healing, I found that these characters’ healing processes seem to fit well into four sequential stages: Preliminary, Crisis, Transition, Reintegration.
Four of the characters regain healthy lives, and five principles seem to explain recovery. First, the emotionally healthy characters implicitly understand who they are, what they are doing, and what they are going to do next. Second, they are open to their future and able to think of various possible occupations based on their past and present occupations. Third, they sincerely engage in an occupation with full emotional involvement. Fourth, they are social beings with a sense of empathy. Finally, they are able to have a balance of subjective experiences. The four characters who do not recover seem unable to have four significant experiences — including emotional evocation, reflection, distanciation, and awareness — and remain trapped in a state of liminality.
Implications for occupational science and occupational therapy include a better understanding of why occupational therapy works as well as strategies for practicing therapist. Not only does one occupation work for some people but not others, but also the same occupation can have opposite effects on the same person at different times. By thinking about the subjective trajectory of the individual, a therapist may be able to better serve that person.
This study started with a puzzle found in a story told by a Japanese occupational therapist working in a geriatric facility: without any improvement of physical function or daily activities, an elderly woman who had had a stroke and the people close to her, including her therapist, were satisfied with the outcome of occupational therapy. The purpose of this study was twofold. The first was to understand what “good aging” (desired aging, in a social and moral sense) means in the case of this elderly Japanese woman. The second was to investigate the subtle therapeutic experience of both the elder and her therapist in order to understand what therapists and occupation can do to promote patients’ good aging.
Using ethnographic methods, interviews and participant observation, this single case study was an investigation of the experiences of the woman and those close to her, as well as the therapeutic experience of her therapist. The research found that the therapist initiated her patient’s transition from life crisis and moved her to return to society, to a socio-culturally sanctioned lifestyle and from despair to hope. To make the transition and to move her throughout the crisis, the therapist invited the woman to join her in “uchi” (a Japanese concept of a space/place of security, intimacy, sharing, and engagement) and supported her engagement in a familiar occupation in the context of that safe and shared space. Engagement in a familiar occupation empowered the old woman to reestablish her daily life in her new world after stroke and to reconnect with her loved ones and with her past and future.
This study indicates that occupational science and occupational therapy hold a more complex view of occupational beings in old age than the traditional functional (performance oriented) view. For seniors undergoing life crises as a result of illness or disability and in danger of losing communication with the world and connection with their past, occupation using uchi can promote their becoming authentic occupational beings by creating and re-creating continuities with the world and with their own autobiography.
This dissertation is based on an 18-month ethnographic study focusing on the experiences and lives of four individuals living with spinal cord injury. The processes of creating and expressing identities through occupations within the context of daily life are explored through interviews, participation, and “hanging out.” In particular, an emphasis is placed on the actual doing and experiencing of momentous as well as ordinary occupations.
The findings in this study suggest that occupations are not enacted within neutral socio-cultural worlds, but envelop the socially charged complexities of myriad discourses existing within a broader social milieu. The participants in this study orchestrate a repertoire of occupations within multiple contexts, both of which are frequently imbued with undertones of social power and privileges. The author suggests that it is through the experiences that come from the actual engagement in occupations, sometimes the seemingly simplest occupations, in which powerful possibilities existing within people are felt as potentiality. The findings from this study also suggest that sometimes the most unexpected, ordinary, and seemingly trivial occupations emerge as the most powerful in revealing the continuous and sometimes arduous process of crafting identities.
I draw heavily on, and in a way enter into dialogue with, a practice theory of self and identity proposed by Holland, Lachicotte, Skinner, and Cain (1998), to lay out several contexts in which to explore the construction of identities. I attempt to build on research in occupational science, continuing to expose the complexity of occupations and the processes in which these individuals create and shape multiple co-existing identities through active participation in life. This dissertation is about creating, shaping, and expressing who one is through what one does, and it is about living with a disability — specifically a spinal cord injury — in the 21st century.
Spirituality is a fundamental reality of life and interrelates with a person’s experience of meaning-making through daily occupations. This qualitative study provides insight into three Episcopalian women’s lived experience of spirituality through occupations in everyday life. The research employed a phenomenological approach to in-depth interviewing, participant observation, and participant journaling over a 15-month period.
Through recursive coding and interpretation, relevant themes emerged. The women’s lived experiences of spirituality through occupation appear dependent upon several factors. Contextual environments including the physical world of space, place and objects; temporality of yearly rhythms and time of day; and the social world prove important to nurturing spiritual experience through occupation. Participants engage in occupations which make tangible their central ideologies including values, religious doctrines, images of God, and other beliefs. The women’s central ideologies reflect dynamic experiences of negotiation and shifting as evidenced in their occupational engagement. An interrelated system of doing, reflection, and intention hones the women’s experiences of spirituality through occupation. This system undergirds such experience by providing an opportunity to look within, make interpretations, and focus the meaning of an occupation based on internal states. Doing involves not only external action, but can be an internal doing or occupation of the mind. These essential factors of contextual environments, central ideologies, and the system of doing, reflection, and intention coalesce through occupation yielding a lived spiritual experience. Participant types of lived experiences of spirituality through occupation include embodied experiences, emotional experiences, being present at the center, and mystical experiences.
These findings highlight the necessity of viewing spiritual experience through occupation as a process thereby challenging notions of spiritual or religious occupations as categorical. The process, both transactional and transformative in nature, vitally depends upon occupation to make intangible aspects of life tangible. The research emphasizes the importance of viewing spirituality not as an immaterial phenomena, but as a tangible reality made possible through one’s lived experience of occupation.
This study adopted an ethnographical approach to investigate the lived experiences of patients with recent debilitating neurological diseases and their caregivers during an early stage of their illnesses when they were hospitalized for intensive rehabilitation. A review of illness experience studies in medical anthropology, occupational science, occupational therapy, and nursing reveals that this issue has received scant attention, and neither has how these experiences are mediated by the culture of rehabilitation and medicine.
A four-month fieldwork experience in an inpatient rehabilitation unit in central Taiwan was conducted to explore the daily routines of the patients and caregivers in order to understand their lived experiences with rehabilitation. Participation observation was the primary mode of data collection, including regular observations of the daily happenings and activities of the unit, a series of taped in-depth interviews with patients, their caregivers, and rehabilitation professionals, and documentation reviews. In total, twenty-one patient and caregiver pairs were observed and interviewed. Among them, the researcher was able to observe and converse with or interview nine pairs on an almost daily basis. Thirty-three ninety-minute tapes were fully recorded and later transcribed. Several hundred field notes were recorded. Data collection and analysis was guided by the concepts of illness and medicine developed by the researchers interested in using phenomenology, narrative, critical analysis, or occupational science to understand illness experience and clinical encounters.
What was at stake for the patients and caregivers was to make sense of their illnesses and sufferings and to effect changes to reverse the life disruption. Participation in therapy in the therapy clinics, marked by pain and exhaustion, received the priority in the daily routines of the patients and caregivers. Selective Chinese pedagogical philosophies were incorporated in therapy and facilitated patients’ compliance with rehabilitation ideology. Pluralistic approaches of illness and healing in Taiwan provided the framework and context for the patients and caregivers to make sense of their experiences and to seek alternative therapeutics to facilitate recovery. However, certain occupations of alternative therapeutics, such as herbal medication, were turned into an underground practice in order to comply with the primacy of biomedically-oriented rehabilitation.
The study purpose was to determine the psychometric credibility of the Personal Projects Approach (PPA) with persons with multiple sclerosis (MS). Test-retest and alternate form reliability, face and convergent/discriminant validity, and clinical utility were examined. Thirty-eight MS and 25 control participants were involved. Results indicated that the number of personal projects listed, the cross-impact rating score, and 9 of 19 dimensions achieved 48-hour test-retest reliability with ICC values greater than .70. The nine dimensions were: absorption, control, time adequacy, progress, outcome, other’s view, stress, difficulty, and negative impact. Four dimensions (enjoyment, value congruency, initiation, and physical ability) had ICCs between .60 and .69. Alternate form reliability testing indicated that sequencing of dimensions was not a factor in responses.
Face validity of modules 1 and 2 was supported by unsolicited comments of respondents and through a procedural and theoretical analysis. Contributing factors included listing personal projects relevant to respondents, flexibility to use populationrelevant dimensions, and the considerable attention given by respondents. Module 3 face validity was unclear due to the lack of clarity on which respondents’ judgments were based.
Convergent/discriminant validity were tested by evaluating the ability of the PPA to discriminate between MS and control participants. There was no difference between groups for number of personal projects listed (x2=.004, p=.95) or cross-impact score (x2=.06, p=.81). Of the 10 personal project categories, no difference between groups emerged. The categories academic (x2=3.16, p=.08) and work-related (x2=3.33, p=.07) set themselves apart from other categories. No differences between groups emerged for 16 of 19 dimensions. Of these 16, three (control, stress, and challenge) had p-values between .05 and .07. Three dimensions (difficulty, negative impact, and physical ability) showed a significant difference (p≤.035). This study was not powered for principle components analysis, though other studies have shown 4 out of 6 of these dimensions loaded onto one factor variously called stress, project strain, or anxiety-absorption.
Testing clinical utility raised three issues: writing requirement, session duration, and instructions. These were accommodated and the PPA was determined to be feasible. Findings suggest that PPA is a credible and acceptable method for research with persons with MS.
Something’s happening: Emergence of social worlds on the school playground
This ethnographic study utilized a conceptual framework of narrative to examine how children with autism and occupational therapists trained in sensory integration connect to and organize their actions with each other during treatment sessions. Data collected over an eleven-month period included unstructured interviews with primary caregivers, participant observations, field notes, and videotaping of the dyadic interaction between five preschool-aged children with autism and related disorders, and three occupational therapists. Data analysis and interpretation, including microanalysis of gestures and expressions, forgrounded *enacted* narratives or healing dramas that *emerge* out of actions that created significant and aesthetic moments (Mattingly, 1998; Mattingly & Lawlor, 2001). In this study, such “now moments” (Stem, 2004) of sensuality (Desjarlais, 1996) and sociality (Lawlor, 2003) heightened attention to processes of healing: (1) the bodily contingencies of the experience of dysfunction in sensory integration, and (2) the social contingencies of the construction of autism as a disability. Throughout this dissertation, the interpretive analysis led to further theorizing related to healing and contingency, and their entanglement.
The findings of this study included the excavation of the agency and narrative practices of intersubjectivity that children with autism embodied to organize their actions and connect to adult therapists. If the engine of story is trouble (Bruner, 1990), *throwing breaches* is bodily action that contours a narrative structure of experience by creating a gap. In this gap between expectation and result (McKee, 1997), a mutual heightening of attention occurs to one’s own body-self and to the body-selves of others. Drawing from Burke’s (1945/69) Dramatism, *scenic practices* include the symbolic acts that (re)create particular sociocultural scenes. The proclivity of narrative practices with children with autism challenges assumptions around their lack of agency, narrative competence, and intersubjectivity. Such results underline the utility of a narrative as (1) a conceptual framework that embraces embodiment and issues ofpower in sociocultural structures, and as (2) an intervention for occupational therapy practice focused on sociality and the organization of behavior across time and space (Blanche & Parham, 2001).
Ethnographic methodology employing narrative interviews and participant observations were used to understand mothering occupations as experienced in the lives of three Thai women in the north of Thailand who acquired physical disabilities after they had established their families. Mothers’ family members, practitioners, and children participated in this study in order to obtain multiple perspectives regarding experiences of mothering and disability in Thai socio-cultural contexts. Narrative analysis and content analysis of interviews, field notes, and videotapes were used to identify mothering occupations. Three main themes of mothering occupations were mothering difficulty and fragility, meaningful mothering occupations and mothering all along, and family as the source of support and the illness and disability experiences of the family.
Women eloquently narrated stories about mothering difficulty as they struggled to maintain maternal roles and fulfill mothering responsibilities. Their experiences of fragility involved fear of losing mothering power, becoming dependent, and requiring assistance from others in order to carry on mothering occupations. Women resumed and reorganized their mothering lives through engaging in adaptive and meaningful occupations — the careful watching occupations and the borrowed gaze. The careful watching occupations refer to the occupational process of mothers’ ongoing observations, interpretation, participation, and actions toward children’s activities and behaviors. Through the careful watching occupations, care and protective gazes, loving gazes, and disciplining gazes were performed. The study also illustrated that women perceived as well as portrayed themselves as mothers who were capable of raising children in Thai society through engaging in socially valued mothering occupations.
Two patterns of family involvement in childcare were identified: (1) as delegated to and, (2) taken over by family members. The family’s experiences toward the mothers’ illness and disability were illustrated in the details of marital life after the onset of disability, family caregiving roles, and family burdens.
This study helped increase understanding about the participants’ mothering occupations including how their prior experiences of motherhood were maintained and fulfilled and how new adapted modes of motherhood were established and executed in Thai society. The researcher’s reflections on conducting this ethnographic study were discussed. Implications to occupational science and occupational therapy were also provided.
This study describes the perspectives of three high school students with attention deficit disorder, specifically in regard to their experiences of classroom occupations. For the purpose of this study, classroom occupations are defined as activity in which a student engages in during class time. I used ethnographic methods to explore the intangible phenomena (i.e., assumptions, thoughts, values, feelings, beliefs, and ideas) surrounding the students’ experiences with classroom occupations. My intent was to present a complex analysis of classroom occupations as heard from the voices of these three students’ own accounts of their unfolding experiences over time.
The study was conducted as an alternative high school. Over a 16-week period, 145 hours of combined classroom observation (121 hours) and student interviews (24 hours) generated the raw data. The raw observational data was recorded in fieldnotes and transcriptions of audiotaped interviews. Fieldnotes and transcriptions were coded for themes related to students; experiences with classroom occupations, in relation to their form, function, and meaning, as well as activity setting contexts. Codes were organized into unrestricted free nodes and then were collapsed into categories based upon emergent themes. Peer debriefing and auditing, as well as member checking with participants were utilized during data analysis.
Results of the data analysis yielded four major categories of classroom occupations: 1) self-regulation classroom occupations, 2) core-curriculum classroom occupations, 3) social negotiations classroom occupations, and 3) self-construction classroom occupations. Results were organized graphically in the form of three conceptual models that built upon each other to depict the interdependence between classroom occupations and the context of classroom occupations as shaped by context and student goals, values, and motives. In addition, this study found that classroom occupations appear to be useful for the participants to satisfy: 1) personal and social needs for expression, communication, celebration and self-display, 2) neurobehavioral needs for self-regulation and to alter their states, and 3) cognitive needs for useful core-curriculum content in the form of knowledge acquisition pursuant to obtaining a high school diploma.
This study explored the relationship between family routine occupations and perceived maternal stress. The mediating roles of age of the children, the presence and severity of child disability, and general parenting stress on maternal stress related to routines were examined. Seventy-two Caucasian mothers in two-parent families with young children from the San Antonio, Texas, area (40 with children without disabilities and 32 with children with various types and levels of severity of disabilities) completed a Family Routines Inventory; Parenting Stress Index, Short Form; and demographic information. Mothers with children with disabilities assisted with completion of the Pediatric Evaluation of Disability Index. Sixty-eight of the mothers were interviewed to enable identification of maternal strategies used to manage stress related to daily routines.
Mothers of children with disabilities reported significantly greater stress related to daily routines and greater general parenting stress than did mothers of children without disabilities. There was no correlation between the age of the youngest child in the family and the mother’s report of stress related to routines. Correlational analyses inconsistently supported the hypothesis that mothers with children with more severe disabilities would have increased frequency, importance, and stress related to daily routines than would mothers with children with less severe disabilities. Maternal stress related to family routines was positively correlated with general parenting stress and negatively correlated with the frequency of routines. There was a strong positive correlation between the frequency of routines and the importance of routines. Six major categories of maternal strategies that seemed to decrease mothers’ perceptions of stress related to daily routines were identified: unfolding, enfolding, chunking, organization and planning, mother’s attitudes, and mother’s accommodations. Some clusters of most and least stressful routines were similar in the groups.
Stress related to daily routines was most evident when mothers had fewer routinized days or were experiencing greater parenting stress. Mothers with more functionally independent children or children with greater caregiving demands also noted increased routine stress.
Every Sunday, tens of thousands of Filipina domestic workers gathered together at Statue Square in Hong Kong. This study asked the question, What is the significance of gathering at Statue Square to the Filipina domestics in Hong Kong? The objective was to define the form, function, and meaning of the weekly assemblage. After a pilot study, I found that while working in Hong Kong, my Filipina domestic worker participants lived and worked amid a complex environment with multiple disruptions, which presented potential risks for occupational problems of occupational deprivation, occupational imbalance, and occupational alienation. Thus, this study further asked the question, How does gathering at the square influence the workers’ lives amid multiple social, cultural, and occupational disruptions? This ethnography found Sunday at Statue Square to have a potential for alleviating occupational problems among workers. The square is described in this study as a liminal sphere that transformed the place into a provisional society characterized by a special camaraderie of sisterhood. This detachment from the social structures in Hong Kong society alleviated occupational alienation brought about by class discrimination and non-assimilation. Further, during Sundays, a typical day off from work, my participants displayed an enhanced sense of agency at the square for engaging in activities of choice that alleviated occupational deprivation. As such, my participants were able to alleviate occupational imbalance by choosing activities that were of non-work and discretionary as well as acquired various roles that delineated different identities. These chosen activities counterbalanced a week of work and obligatory tasks as well as being only defined as a foreign “maid.” This study has implications for occupational therapists to work in public health arenas to assist in alleviating occupational problems. Further research should aim toward understanding the health promoting aspects of occupation.
How people use occupation to make meaning in their lives has been a question of great interest to occupational scientists. This ethnographic study concerns how adults with high functioning autism, through their efforts at constructing identities, create meaningful lives. Utilizing data collected from extensive interviews and participant observation, this dissertation is about the lives of four adults and their process of “doing, belonging, and becoming.” Each participant’s story is presented as a separate chapter for, though they share a diagnosis, each participant had a unique way of crafting their identities that was influenced by the historical epoch, the socio-cultural environment in which they lived and their personal characteristics.
Despite traditional views that focus on the social deficits of autism, the participants in this study were remarkably resourceful in using social strategies to construct their identities. They used social interaction, narrative and occupation, three inter-related means of constructing identities, although they did not always do so in a “typical” manner. Key to their efforts was locating and becoming part of a community, for, as I argue, it is within these social worlds that identities are crafted. For adults with high functioning autism, constructing identities is a process requiring creativity and ingenuity. It is often hard work, in many ways a struggle. However, the participants persisted in their attempts to craft their identities and create a meaningful life.
By focusing on the lived experience of individuals with high functioning autism, the findings of this study challenge many of the traditional deficit-focused views of autism. This research contributes to the ongoing debate regarding identity, providing strong support for the argument that rather than having a unified and stable identity, individuals construct multiple identities that are socially situated and are revised as life unfolds. The findings also illustrate that people strive to create cohesion and a sense of continuity. While many scholars consider cohesion and fragmentation contradictory, I conclude that these ideas may in fact complement each other. Lastly, the findings provide support for and extend the ideas put forth by occupational scientists regarding the relationship of occupation and identity.
The purpose of this study was to explore issues related to parenting adolescents with the Internet in the household. Using systems theories as a framework, a qualitative design was used to investigate the phenomenon, and give visibility, form, detail and context to parents’ perceptions of and responses to changes related to the proliferation of the Internet. Constructs of interest to the emerging discipline of occupational science were used to examine parenting.
Six parents of eighth-grade students who attended an elite private school in Los Angeles were the informants for this study. Each parent completed a questionnaire, and then was interviewed four times over a 1-year period. The events of September 11th 2001 occurred between the first and second set of interviews, and became part of the research and results. The interviews were tape-recorded and transcribed, and a coding scheme was developed from the data, which was used for the analysis.
Key findings were that the parents perceived the Internet was embedded in the activity routines of the children, used for a growing number of occupational roles. All of the parents believed the Internet was essential for their children, and they also knew it presented risks. The children were typically the experts in the household, and the parents often relied on the children when it came to using digital technologies. Adapting to this inversion of knowledge, each parent developed a comfort level with the child’s overall well-being, based on active involvement in their lives that took many forms. As parents sought to create opportunities for communication, they faced many obstacles, including busy schedules, normal adolescent drives to separate themselves, and competition from communication technologies. Dividing attention between multiple occupations was a routine practice. Strategies around technology use included manipulation of objects in the household environment and establishing guidelines for uses of objects and technologies.
This study opens a window into the exploration of a complex phenomenon, and points to the need for further investigation. Future avenues for research are suggested.
This study investigated quality of life, occupation and prosthesis use among Taiwanese elders with lower extremity amputation from an occupational science and occupational therapy perspective. The research design involved quantitative instrument and semi-structured interviews. Quantitative descriptive and inferential statistical procedures with standard health-related quality of life measures, the SF-36 Taiwan and the World Health Organization Quality of Life Assessment-Taiwan short version, and a demographic data form investigated quality of life and prosthesis use among elderly amputees. Interviews gave insight into how amputation changed life quality, and occupation.
The quantitative study included 90 participants with a mean age of 71.3. Multiple regressions revealed less social support correlating with reduced quality of life. Higher level of amputation, less prosthesis use, presence of helper, and presence of other disease were associated with reduced scores on the quality of life measures. No statistical relationship was found between socioeconomic status and quality of life nor between age, gender, level of amputation and prosthesis use. Non-hypothesized but significant relationships found that people living at home wore their prostheses significantly more than people living in institutions, and more years since amputation predicted more frequent prosthesis wearing. Independent-t tests found little significant difference in quality of life between the sample of elders with amputations and Taiwanese normative data. The two health-related quality of life measures correlated moderately, as expected, and demonstrated validity and reliability for use with this group.
One-third of the participants were interviewed. Results showed that life attitude, previous life experience, relationship with family, resources and aging related to their quality of life. Amputation influenced their mobility, leisure, social activities and relationships. Prosthesis use supported participation in daily activities and provided psychological meaning. Both quantitative results and interview findings demonstrate that more social support relates to higher quality of life. Findings suggest that it is not only important that elderly amputees use prosthesis to maintain functional mobility, but also engage in occupations and maintain/obtain social relationships with family and society.
This study assessed the play performance of 37 boys with autism and 42 boys without disabilities, aged 3 to 5 years, in Taiwan. Play performance was determined from videotaped observation of boys playing in the naturalistic environment, and rated using the standardized instrument of the Revised Knox Preschool Play Scale (PPS).
Results indicated that the autistic boys scored significantly lower than the normal boys on PPS and its four dimensions. Analyses demonstrated a significantly higher correlation between the PPS age scores and the chronological age in the normal boys than in the autistic boys. Discriminant analyses revealed that the age scores from PPS and its dimension of Space Management, Pretense/Symbolic, and Participation, each correctly classified the subjects into their actual groups with a high degree of precision (i.e., the classification rate ranged from .84 to .98). The score from Material Management dimension only correctly classified 67% of the subjects.
The Chinese Version of Peabody Picture Vocabulary Test-Revised (PPVT-R) was administered to estimate subjects’ cognitive capability. Of 37 subjects with autism, only 15 subjects completed the test independently with a score over 70. An additional statistic was applied to compare the performance of this subgroup of autistic boys with their normal peers. Analysis indicated that this subgroup of autistic boys scored significantly lower on PPS and three of its four dimensions (Material Management, Pretense/Symbolic, and Participation) than their normal peers did. However, caution should be given to the interpretation of these results since the cognitive functioning (as measured by PPVT-R) was significantly lower in this subgroup of autistic boys, as compared to the normal controls.
This study broadened understanding of play performance in the Taiwanese population and was informative of the potential play deficiencies that may help explain a wide range of the impairments associated with autism. It also raised a number of concerns that demand future investigation. Some comments regarding the implication of the findings and the application of PPS in the Taiwanese population were directed to Taiwanese practitioners.
Pollie Pauline Price
Occupation-centered practices: Providing opportunities for becoming and belonging
Tobacco smoking is a major unhealthy occupational behavior among adolescents in the United States. This study investigated the quality and patterns of occupational experiences while smoking, the change of occupational experiential quality over the period of pre-, during, and post-smoking times, and the occupational experience while smoking in different flow states. One hundred and five students of the 6th grade from Los Angeles area participated. The Experience Sampling Method combined with Palm IIIe technology was used to collect self-reports. External and internal experiential variables were collected in real time or in close proximity to the actual occupational occasions.
Participants mostly smoked in the afternoons of weekdays with friends and peers. Smoking mostly occurred in bedrooms, public streets, less supervised areas of school, and garages, while participants were engaged in passive activities. While smoking, internal occupational experience was in entropic states, with significantly decreased affect, activation, cognitive efficiency, and self-concept. Examination of the peri-smoking times showed that those entropic states started about 50 minutes before smoking, worsened while smoking, and recovered to negentropic states about 50 minutes after smoking. Further examination of internal experiential patterns with a four-channel flow model showed that the entropic states associated with smoking occurred mostly in the state of apathy. When challenges and skills were both below individual average, smoking was associated with significantly lowered affect, activation, cognitive efficiency, and self-concept.
Those results revealed the occupational risk factors for health in adolescents who smoked. Smoking was associated with lack of occupational balance, occupational deprivation, and occupational alienation. It was proposed that adolescent smoking, as an alien power, deprived the adolescents of opportunities to explore goal-oriented, meaningful, and purposeful occupations. An occupational science approach for correcting the occupational unbalance and occupational deprivation was suggested.
The history of occupational therapy has previously been defined primarily in terms of the how specific cultural events have shaped the growth and development of the profession. Moral treatment, the Arts and Crafts Movement, the Emmanuel Movement, and World War I, tend to be the guiding lights in the history of the profession as previously written. This study asserts that while these various cultural events have played assorted roles in the development of the profession of occupational therapy none have investigated the core construct of professionalism: science. Though downplayed in previous histories, it was science that provided the foundation for this new practice that would become incorporated into the world of medicine. Beginning at the end of the nineteenth century this study primarily traces developing thought in the world of psychiatry relating to the therapeutic use of occupation. Scientific theories of the human energy system and the growing awareness of the power of the mind in the processes of health and healing would motivate the medical profession to develop a new branch of therapeutics, psychotherapy. Given ideas that related both mind and body in the cause and cure of mental illness it would be work, or occupation, that combined both of these concerns. Addressing both the body through action and the mind through discipline, occupational therapy would emerge as a powerful mind-body cure. In order to delineate a scientific foundation for treatment various schools of psychological thought were utilized and incorporated into the professional literature. With the growth of the profession following World War I occupational therapy would enter a variety of practice areas, but it would be in the area of psychiatry that the incorporation of the theory and rhetoric of science would be most profound. This study finds that previous histories of the profession have largely overlooked the pivotal role of science. This study provides a new look at the history of occupational therapy, exploring the fundamental role of science in the development of this profession.
This study examined the assumptions of sensory integration theory regarding the relationships among five sensory systems (the tactile, proprioceptive, vestibular, auditoiy, and visual systems) as measured by the Evaluation of Sensory Processing (ESP). Questionnaires completed by parents of 454 children with sensory integration problems were collected for this study. Questionnaires were grouped and analyzed in two age groups. The younger group consisted of 231 children aged 2 years, 0 months, to 5 years, 11 months. The older group consisted of 223 children aged 6 years, 0 months, to 10 years, 11 months. ESP data for the two groups were analyzed separately using structural equation modeling (SEM). Although the procedure of finding the best-fit model with the observed data was performed independently for each age group, the final accepted SEM model was identical. The results from data analyses suggested the combination of the vestibular and the proprioceptive systems into a single system, vestibular-proprioceptive system. The correlation between the tactile and the vestibular-proprioceptive system, and the direct effects from the tactile system to the auditory system, and from the vestibular-proprioceptive system to the visual system and to the auditory system were supported. However, the direct effect from the tactile system to the visual system was rejected. In addition, a multiple-group analysis was conducted to test invariance of the final accepted SEM model for these two groups. The results indicated that the structural regression paths, factor correlations, and factor loadings of this model were equivalent across the two groups. This study might help us to better understand the relationships between sensory integration and occupations.
This study provided descriptive, exploratory data about the after school occupations of 24 young adolescents, ages ten to thirteen, residing in a homeless shelter with their families. These data were gathered through semi-structured focus group and individual interviews, as well as one-week time use journals. Data were analyzed quantitatively with descriptive statistics and qualitatively using the constant comparative method. The results yielded estimates of frequency of occupational time use as well as emergent themes and concepts describing the occupational nature of young adolescents during the out-of-school hours.
These data provided information about: after school and weekend occupations and occupational routines as well as the meanings young adolescents assigned to them; the meanings youth assigned to personal health and its relationship to occupational engagement; the influence of demographic variables on time use; and, the resources youth identified as influencing their occupational participation during the non-school hours. Occupational routines during weekdays typically included obligatory occupations with limited choices and constant adult supervision. Weekend time use was variable depending on the parent’s social and financial resources. Overall, youth reported feeling “trapped” and “bored” in obligatory routines while residing at the shelter.
Meaningful occupations associated with self-reported personal health included: involvement in informal sports, social participation with friends and caring adults, an array of ‘interesting’ activity choices, and, mobility within the community. The relationship between perceived physical and emotional health and occupational engagement was also related to the child’s unique ability to access certain extra-personal (i.e., parent, friends, shelter staff) as well as intra-personal resources (i.e., personality traits, problem solving abilities, emotional responses).
Themes related to the self-reported occupational pursuits of young adolescents were merged into three major concepts: (1) Occupational necessity: Social intensity; (2) Boredom and shelter living: Occupational advantages and disadvantages; and, (3) Designing a life: Taking control. Implications for occupational science, occupational therapy, and public policy were identified with specific recommendations for policy, program development, and future research.
Understanding and participating in the activities of young children, especially children with developmental disabilities such as autism, can be difficult for adults. In this qualitative study, the guiding question was “How do young children with developmental disabilities create and convey meaning through their daily activities?” The participants were a total of 5 three- and four-year-old children, with a diagnosis of autism, who did not consistently use language to communicate spontaneously. Participant-observation was used to collect data in the home and other natural settings in which the child engaged in daily activities. Interviews with key adults in the child’s daily life provided supplemental information. Analysis of fieldnotes and transcripts was focused on the children’s occupations, that is, meaningful, directed activities that occupied their time.
Unique patterns and preferences were identified and described for each child and his or her activities. The meaning, from the child’s perspective, was interpreted with close attention to how a child did the activity and its relationship to the child’s needs, desires, and abilities. Findings were related to the following conceptual topics: defining occupation, framing an occupation, the nature of changes within an occupation over time, temporal links to past occupations, occupational structure, self-direction, and reframing of required activities into more satisfying occupations. Although they shared a diagnosis, through their engagement in activities, the children were seen as unique individuals with their own particular interests and abilities.
Categories of the children’s activities with others were identified as being equipped (accepting materials from another), guided (accepting assistance from another), mentored (incorporating another’s suggestion), and shared (maintaining reciprocal interaction). The participants used their bodies, sensory perception, objects, and scripted action instead of words to mediate and focus their interaction on an activity with shared meaning. There was an implicit agreement about the shared meaning of the activity — what they were doing, why, and how. Through these shared activities, the children seemed to be connecting and building relationships with other people. Suggestions were made for balancing person-centered and family-centered services for children with developmental disabilities.
The education of gifted adolescents that underachieving is a significant problem that impacts on the child’s educational opportunities and possible career trajectory in Taiwan. In recent years, many researchers have investigated the relationship between motivational orientation and achievement. This study used an occupational science paradigm to examine the relationship between motivational orientation, school-related occupations, and achievement. Participants were 91 high achieving gifted and 57 low achieving gifted junior high school Taiwanese students from northern, middle, and southern Taiwan. Participants provided information on age, IQ score, percentile ranking, sex, and social economic status. They also completed The Occupational Questionnaire (Smith, 1986) and The Scale of Intrinsic versus Extrinsic Motivation (Harter, 1981).
In this investigation, there were four questions addressed. The results indicated that school-related occupations were delineated as on-campus academic, school-support, and off-campus academic school-related occupations. There were statistically significant relationship between achievement and time expended, and importance of school-related occupations in Taiwanese gifted children. Secondly, there were statistically significant relationship between achievement and motivational orientation on Preference for Challenge, Independent mastery, Internal criteria, and total scores in Taiwanese gifted children. Thirdly, the results indicated that there were statistically significant positive linear relationship between motivational orientation in total scores and time expended, and interest in school-related occupations in Taiwanese gifted children.
This study has cross-cultural comparisons to U.S. students regarding the time expended on on-campus and off-campus school-related occupations for teenagers gifted children, and regarding the comparisons on the cultural value of schooling. Second, this study has the cultural implications of the relationship of societal value and academic achievement; and the relationship of motivational orientation for school-related occupations and schooling in Taiwan. Lastly, the implications for Occupational Science and children’s education were also discussed. The present investigation partially supported the hypotheses. There may be four reasons for the unsuccessful results. Therefore, there were five topics for future study suggested.
Overview. Parkinson’s disease (PD) was chosen as a model for investigating the interconnections of chronic disease and participation in occupation (activities). Using the six proposed components of participation in occupation (continuity, social style, meaningfulness, satisfaction with self-perceived ability, discontinuity, and loss of meaning), the impact of PD in participation in occupation was described; a parsimonious set of descriptors was determined to reflect participation in occupation. Further, best predictors of quality of life in individuals with PD were explored among participation in occupation, severity of PD, depression, fatigue, social support, and demographic variables.
Method. An interview was conducted in 108 individuals with PD, recruited in Los Angeles (n=35) and St. Louis (n=73). The participants should score less than 5 on the Modified Hoehn and Yahr Stage (MHY). Participation in occupation was measured by the Activity Card Sort-revised (ACS-r). Quality of life was measured by the Parkinson’s Disease Questionnaire (PDQ-39).
Results. Multivariate one-way analysis of variance was computed with the variables of the ACS-r, the effect ofthe MHY was significant at p = .0034. Statistically significant results were found on seven variables (continuity, satisfaction-do less, discontinuity due to PD, discontinuity due to health, discontinuity due to the loss of interest, discontinuity due to situation not available, and loss of meaning due to PD). Linear trend effect among the MHY was found for continuity, discontinuity due to PD and loss of meaning due to PD (p
< .0001). The results of the factor analysis of the ACS-r revealed a five-factor solution with a simple structure. The factors of Continuity, Affective-Appraisal, Social Style, Life-Events, and Vitality had explained 70% of the variance. A set of significant predictors could account for 85% of the variance in quality of life, among them the Continuity factor, depression, and duration since the first PD symptoms were the strongest predictors. Participation in occupation explained 64% of the variance of quality of life.
Conclusion. Participation in occupation could contribute to quality of life in individuals with PD. The ACS-r can potentially be a methodology to study occupation.
Elizabeth Snow Russel
Career change in mothers of children with disabilities Full text
A core concept of occupational science holds that occupation (i.e., personally meaningful activities that have cultural significance) promotes adaptation to challenging life circumstances. People with disabilities often meet with greater challenges due to the socially and physically constructed barriers encountered in daily life and employment. The Americans with Disabilities Act (ADA) was designed to eliminate these barriers in the public sphere. This ethnographic study addressed the impact of civil rights litigation (through ADA-Title I) on the daily lives of ten people with mobility impairments.
Litigation functioned as a rite of passage that transformed individuals who sued their employers for disability discrimination. The ritual transformation led participants to reconsider self in context of relationships, employment, society, and disability, leading to disability reidentification; acknowledgment of membership in the minority group of people with disabilities. ADA litigation became a moral obligation — a form of resistance to discrimination. Resistance was adaptive; it preserved personal integrity and served as disability rights advocacy.
Litigation stress disrupted occupational routines (i.e., characteristic patterns of activities which occupy one’s time) and led to occupational displacement. That is, participants disengaged from healthful activities due to emotional effects and schedules of litigation. However, participants who were more fully engaged in their preferred occupations described fewer negative outcomes and higher life quality.
ADA litigation outcomes varied: two litigants lost on appeal, one lost in summary judgment, two received negotiated settlements, one dropped her suit, and four were still in process. Adaptive strategies involving use of the law did not yield immediate life improvements for the litigants; participants did not significantly improve employment circumstances, nor income, through litigation, and most suffered in these domains. However, even for the participants who had positive legal outcomes, the cost of resistive-adaptation was inordinately high in terms of disrupted life routines and life quality.
Study findings reinforce the value of systematic application of life history methods in promoting understanding of human experience, and particularly on the influence of occupation on health. Participants reported benefits gained from study involvement related to life review and the expectation that their litigation stories would reach a larger audience.
This study focused on the presence of process-oriented experiences and play in the life of the adult. The methods utilized included interviews, participant observations, and a survey of the experiences derived from performing daily occupations during a sample day. Analysis of the data indicated that the characteristics of play are present in daily activities throughout life. These characteristics occurred most often during the performance of secondary rather than primary activities.
The characteristics of play described in the literature were supported and clarified by the findings of this study. These characteristics included spontaneity and freedom in the decision and/or during the performance of the activity, a sense of excitement or increased energy, pleasure, an element of novelty, mental and/or physical activity, and a primary purpose of fun or satisfying oneself during its process.
The experiences derived from process-oriented occupations described by the participants included restoration, ludos, self-awareness, mastery, adventure, and creativity. These experiences represent different characteristics of play. Process-oriented occupations are often utilized to regain one’s sense of well-being and to redesign a life style. The temporal pattern of redesigning a life style was introduced. It includes the trigger, the process itself, the expressed satisfaction, and in some cases recementing balance.
Louise Jane Farnworth
The time use and subjective experience of occupations of young male and female legal offenders Full text
This study focused on the examination of the role of occupation in generating a transformative process in children with a history of emotional problems attending a summer camp. Occupations are defined as chunks of personally meaningful activity that can be named in the lexicon of the culture. The research questions addressed the constructs of cultural narrative and liminality. The first question explored how the values and belief system of the camp in the form of a cultural narrative were transmitted to the children and personnel. The second question focused on whether the activities had a liminal quality and whether, as a consequence, they seemed to generate transformation in the campers. Qualitative research methods, including participant observation and interviewing were used with the 91 children and 18 adults who constituted the study cohort. Findings revealed that a particular narrative emphasizing positive success, camp as fun and as family, valuing nature, multiracial living and learning by doing, and de-emphasizing competition was transmitted throughout the culture. Further, these values and beliefs were enacted and transmitted through daily patterns of occupation, symbols in the camp experience, and through an end of camp ceremony which embodied the classic features of ritual. Finally, it appeared that camp life was distinguished from quotidian life because of how the beliefs and values embedded in the cultural narrative shaped activity and rendered it liminal. In camp, children reported they were separated from family situations that were often problematic, from social reputations that were not positive, and from lives they perceived as boring. They felt changed or transformed by the camp experience and this change was viewed as a transformation of self which involved real achievements in camp occupations and in working with others. This study was conceptualized within the domain of occupational science which seeks to generate knowledge concerning the form, function, and meaning of occupation. The study identified occupations as conveyors of meaning. Occupations were tailored to express the values of the camp cultural narrative and also served to transmit those values.
This project explored subjective experiences of daily occupations and perceptions of health in the social and physical contexts of everyday life of women with HIV/AIDS. Using the Experience Sampling Method, women recorded their activities, emotional states and perceptions of health semi-randomly, in their daily lives for one week.
Factor analyses yielded two separate domains of subjective experience. One domain, cognitive appraisals, consisted of five factors named Distress, Hedonic, Meaningful, Motivation, and Support. The second domain, affective states, consisted of Activation, Positive Emotion, and Negative Emotion. Health variables consisted of singleitem scales to measure Pain, Energy, and Health, and a score that reflected the severity of Symptoms experienced.
Distress was statistically significantly negatively correlated with Health and Energy, and positively correlated with Pain. Support was positively correlated with Energy and Health. Activation was correlated positively with Health and Energy, and negatively with Pain. Positive Emotion was significantly positively correlated with Energy. Positive Emotion tended to be negatively correlated with Pain. Negative Emotion was correlated negatively with Health and Energy, and positively with Pain.
Analyses of variance revealed main effects of type of daily occupation (activities of daily living, work, leisure), social context (alone, with family and friends, with others), and physical context (home, public, other spaces) on subjective experience of occupations and perceptions of health. Occupation significantly affected the Hedonic quality of activity, Distress, Positive Emotion, Symptoms, and Pain. Social context significantly affected the Meaningfulness of the activity, Negative Emotion and Health. Physical context significantly affected the Hedonic quality of the activity, Motivation, Activation, Positive Emotion, Negative Emotion and Symptoms. Physical context modified the effects of occupation on Hedonic quality, Distress, Positive Emotion, and Energy.
This occupational science project revealed that the type of daily occupation as well as the social and physical contexts of occupations affected how these occupations were appraised, emotional states experienced, and perceptions of health. These findings provide an avenue for designing and testing occupation-based interventions to promote wellbeing in women with HIV/AIDS.
Qualitative methodology employing in-depth interviews and modified participant observation was used to explore the question: How does participation in occupation (activity) contribute to the establishment and maintenance of friendship of women with physical disability? Four middle-aged, college educated, employed, and socially successful women who have spinal cord injuries, each of whom uses a wheelchair for mobility, participated In the study. Each chose her own best or close friend (who happened to be non-disabled) to participate as the other half of a friendship pair. Narrative analysis was used to compose the four friendship stories that emerged from the data.
Occupational science provided the conceptual frame of reference for the study emphasizing the skills, strengths, and capacities of the occupational being. The individual stories of the friendship pairs showed a seemingly mutual relationship between occupation and friendship suggesting that occupation is important in the establishment and maintenance of friendship, and friendship, in turn, supports the individual’s engagement in rounds of meaningful occupation. Participation in occupation seemingly provided the forced proximity to potential friends and thus the adequate time to let relationships develop. Further, the friendship narratives’ plot lines describe friendship as “evolving occupation” as all four pairs progressively built their stories around participation in occupations that were, in turn, imbued with increasing amounts of personal meaning and sentiment. Friendship occupations emerged as vehicles for meeting such human needs as emotional support social acceptance, celebration, esteem, insight, innovative learning, reminiscence and healing.
The friendship narratives were also viewed as challenging the “habitus,” or society’s ordinary experience and behaviors surrounding friendship and disability. These challenges included the friends’ negotiation of personal favors and responsibilities, management of personal and private occupations, accessibility to friendship occupations, attitudes toward disability, and questions of etiquette surrounding disability and friendship.
The study’s implications for occupational science and occupational therapy are described. The role of friendship occupations as revealed in the composition and recomposition, design and redesign of the lives illustrated in the friendship narratives is positively reinforced by this research.
Susan Hirsch Knox
Play and play styles of preschool children Full text
For a variety of reasons an increasing number of mature women (and men) are returning to college in order to prepare for occupational changes. This qualitative study, using occupational science principles, was undertaken (1) to investigate the effectiveness of the Self Discovery Tapestry, an instrument which encourages self assessment of transition-making and life history; (2) to better understand occupational adaptations undertaken by women as they assumed student occupations; and (3) to establish whether continuity and critical events life span theories are supported.
Ten mature women students who had recently enrolled in local institutions of higher education were the study participants who completed the Tapestry and participated in an interview. Interviews were audio taped and transcribed. The Self Discovery Tapestry and the interviews were analyzed using grounded theory procedures.
The Self Discovery Tapestry, a paper and colored pen instrument, represents one’s life as a weaving; highlighting the areas of interpersonal relations, employment and educational occupations, personal meaning, and self evaluation of moods. Hoped for future occupations are identified. Self analysis of their Tapestry was encouraged to allow participants to determine their unique styles of transitions regarding critical events, areas of continuity, and whether their new occupational choices were adaptations of their past “authentic” occupational careers.
Final analysis indicated study participants found the Self Discovery Tapestry an effective instrument for eliciting awareness of transitional styles and life review as well as identifying future occupational activities. It appears that women adapt behaviors to student occupations when they attenuate their child rearing occupations and learn to delegate or temporarily postpone household responsibilities. Friendships, financial status, employment, and marital partnerships were amended to allow time and energy for scholastic accomplishment. Participants resolved to devote themselves to excellence in their academic occupations. Support for continuity and critical events theories was evidenced. In each case, the decision to return to education was the result of perceived critical events. Continuity of personality and interpersonal relations were evident.
The power of choosing and organizing satisfying daily occupations is believed to be a potent influence upon subjective well-being. In this study, informants, who had a demanding burden of care for a child with severe disabilities that was likely to compromise subjective well-being were sought. A review of the literature suggested that mothers parenting children with disabilities experienced extreme demands on their time, had limited leisure activities, lacked sufficient sleep, and were dissatisfied with the time constraints of their lives. In this study, six Mexican-origin mothers, an understudied ethnic group, parenting children with high burden disabilities served as informants for in-depth case studies including multiple interviews, a day long participant observation, and triangulation data that examined subjective well-being, maternal work, and daily occupations. Findings suggested that being a “good mother” was linked to maternal subjective well-being and occupations. Having a child with a disability initially impeded successful mothering. To reconcile this, mothers embraced the paradox, an internal tension of opposing forces between loving the child as he or she was and wanting to erase the disability, between dealing with the incurability while pursuing solutions, and between maintaining hopefulness for the child’s future while being given negative information from others as well as battling her own fears. Though stymied by “crashes” where maternal aims were frustrated, mothers “bounced back” to a revised but still tenuous position of optimism about the child’s future. This required that each mother orchestrate occupations so that they were child sensitive, commensurate with her maternal values, efficient at meeting her desired daily maternal goals, and aimed toward future maternal goals. For these mothers, the embrace of the paradox was in service of occupational engagement and subjective well-being.
This study describes the typical development of independent infant negotiations of the spatial and temporal dimensions of the physical environment of the home. The study’s design was qualitative and longitudinal, using videotapes and maternal interviews from a crossclass sample of 18 typically-developing Caucasian infants followed from ages 1 to 18 months of age. The focus of data collection was self-directed play with the objects and spaces of the home. At the broadest level, this theory highlights three central characteristics of human occupation: instrumentality, intentionality, and the interactive dynamic between individual with context. Description of the emergence of the infant’s capacity to instrumentally negotiate and manipulate the space and objects of the physical environment included ranging patterns, activity maps, the motor lens, the role of gaze and visual play, and a variety of types of stationary and mobile object interactions, including previously undescribed types of play such as dancing, climbing, propelling, driving, carries, and ferries. The infant’s increasing intentionality was seen in developmental changes in the temporality of infant object play across three existing sequence lengths: the infant object interaction, phases within that interaction, and series of infant object interactions. Viewing this interaction across development revealed the lengthening of interactions, strengthening of the infant’s ability to conceive and complete an action over time, and the extension of the infant’s temporal horizons into past and future. Contextual influences on the infant’s play in the home were described within sociocultural, spatial, temporal, and physiological domains. This occupational science study provides a developmental description of a set of human occupations in their simplest infant forms. As such, it contributes to the understanding of occupation, as well as promising potential to support the play-based interventions of occupational therapists working with children at risk for developmental delays.
At the heart of occupational science and the occupational therapy profession lies the belief that people can create meaningful lives by engaging in occupations (i.e., activities, practices, rituals) that are symbolically significant on a personal and cultural level. Related to this notion is the assumption in occupational therapy practice that treatment must take into account the multidimensional aspects of a person. This study explored these two themes in the lives of lesbians. First, I described how lesbians created and nurtured their lives by weaving together their lesbian identities and occupations. Second, I gathered descriptions of the kinds of therapeutic environments that were constructive to versus those that hindered the provision of authentic occupational therapy to lesbians. Qualitative research methods embracing a feminist perspective were used to analyze multiple, in-depth, open-ended interviews of twenty lesbians, ten were occupational therapists and ten had disabilities.
Several key findings emerged. First, being lesbian influenced the respondents’ lives in leisure, political, and spiritual spheres. Second, occupations that possessed particular qualities — homosexual social context, homosexual content, homosexual symbolism, or a tenor that encourages emotional peace about one’s homosexuality — constituted expressions of lesbian identities. Third, occupations often embodied and reified heterosexual ideologies and social convention, creating discomfort for lesbians. Fourth, lesbians longed to be authentic with respect to their lesbian identities. They described rituals that they created to honor their lesbian identities, promote feelings of integration, or bridge the heterosexual and homosexual world views of friends and family. Fifth, heterosexual climates pervaded occupational therapy clinics and were maintained through heterosexual discourse, homophobic comments, assumed heterosexuality, stereotyping, and harassment. Therapists dealt with heterosexual environments by separating, passing, surveying, censoring, and strategically using anger. Despite the prevalence of heterosexism, genuine humanistic approaches toward patients and co-workers contributed to positive occupational therapy work environments. Sixth, heterosexist attitudes and practices invaded most areas of rehabilitation and, at times, compromised treatment in ways that were not immediately evident to patients. Finally, occupation-centered occupational therapy is one way that occupational therapy clinics can become more lesbian-sensitive.
Qualitative research design using grounded theory procedures and techniques was used to build a model about how seven women who were Caucasian, college- educated, middle class, not employed full time outside of the home, and free of major functional impairments used routine to influence their well-being. In-depth interviews, observation, an autobiography, and researcher generated memos provided data. Data analysis was composed of concept formation, concept development, and conceptual modification and integration. Data collection and data analysis were concurrent and reflexive.
The results indicate that these women do utilize routines to facilitate their well-being. However, they reported doing so to a lesser extent than when they had children living at home or worked. These respondents unpackaged routines and molded them into increasingly flexible strategies in response to age related changes.
Cultural heritage, parents’ values, and childhood routines comprised the foundation of routine and influenced formation of sense of self. Sense of self directly influenced family values, goals, family structure, woman’s individuality, and work outside of the home. Each of these affected each other and routine.
The individuality of the woman demonstrated an inverse relationship with family values and goals and family structure. This dynamic process is not perfectly linear because caregiving duties when children returned home and parents became frail took precedence for many of these respondents. Physical status, environmental variables, presence of others, and work also influenced routine.
The dimensions of routine that were identified and placed along six continua are: enjoyment, flexibility, extensiveness, autonomy, leisure or work, and people or task-oriented. The nine outcomes of routine that directly related to well-being were classified as being able to meet obligations; maintain activity level; maintain health and physical status; look forward to things or events; maintain control; balance work, rest, play; accomplish and achieve; feel good about one’s self; and provide continuity. The consequences of engagement in routine occupations provided feedback to sense of self and, thereby, contributed to a sense of continuity and unity.
Occupational science seeks to explicate the nature of occupations and how they are orchestrated into the daily lives of individuals and their families. Occupations are defined as chunks of personally meaningful activity that can be named within the lexicon of aculture. Parental occupations within families include their participation in household work and in play with their children. The division of household work between women and men has become a popular area of study over the past several years, but play between parents and their children as it occurs within their homes has been given little attention in the research literature. Using a qualitative research approach, this study described the play of mothers and fathers of preschool-aged children as it occurred within the context of the daily occupations of families with traditional and non-traditional divisions of household work. Participant observation, intensive interviewing, and questionnaire data were collected from ten families with preschool-aged children. This study, conceptualized and formulated within the domain of occupational science, teased out the nature of parent-child play, its relationship to differing divisions of household work, and how it was orchestrated within the daily occupations of families. Several different types of parent-child play were observed, including those that have been consistently described in the literature. In addition, this study identified previously undocumented types of parent-child play. Although gender differences were noted in parents’ participation in some types of play, both mothers and fathers participated in a wide range of play activities and were not limited to gender-specialized types of play. Divisions of household work according to gender were found to be related to some types of parent-child play, but did not account for differences between families. Parents were observed to use two types of strategies to orchestrate work and play in their families. Strategies of segregation resulted in parent-child play within the context of daily routines. Strategies of inclusion resulted in play embedded in household work, specifically parental participation in play within household work and scaffolded play within household work.
In this study of adaptation of families raising children with attention deficit hyperactivity disorder (ADHD), seventeen families were interviewed to learn how they adapt their schedules, routines, and the performance of occupations to increase life opportunities and enhance the family’s quality of life. The families that participated in this study were recruited from three chapters of the national support group of Children and adults with Attention Deficit Disorder (CHADD). They were also recruited from an occupational and physical therapy clinic. Each family was interviewed at least twice, and the total number of interviews was thirty-eight. Twelve families were married and in seven of these families both parents participated in the interviews. Of the five female headed families, one was recently separated and the father participated in the first interview. In the first interview families were asked to tell me the ‘family story.’ They were asked to decide when to begin the story, whom to include and to proceed chronologically. In the second interview, the families were asked to describe their daily and weekly schedules and routines. The first interview was used to find the context and meaning for the schedules
The analysis of data revealed that family schedules are composed of two distinct components: anchored and responsive schedules. Usually, the anchored schedules are the result of participation in the work force and the school system. The responsive schedule is composed of all the sections of the schedule that the family can control, and it is constructed by selecting, organizing, and managing the children’s occupational performance. The study discusses the adaptive strategies that introduce the responsiveness into the schedules and their contribution to the sustainability of family routines. In addition, family policies, time together and time alone are presented as components of family quality of life.
This dissertation addressed a core assumption upon which the profession of occupational therapy is based: that engagement in occupation is the primary adaptive vehicle through which health is developed and sustained. Subjects consisted of eleven chimpanzees who lived at the Los Angeles Zoo. Varying environmental influences upon subjects’ occupations, and thus their adaptation and health, were investigated. Environmental influences were defined as 2 levels of viewing crowds (high and low) and 3 levels of environmental enrichment (freshly introduced or “high” enrichment, 1 day old or “low” enrichment, and no enrichment leaving barren conditions). Crowd levels constituted potentially noxious environmental influences over which subjects exerted little control; environmental enrichment constituted an analog to occupational therapy with people. The study group was videotaped from 12:00 to 3:00 PM on 5 consecutive days for 5 weeks. This filming schedule permitted quantitative analysis of data within a 2 by 2 factorial design of crowds and enrichment (high and low levels) as well as an analysis of variance across all enrichment levels under low crowds. Thirty-three hours of videotape were coded at 60 second intervals according to each subject’s primary occupation and social context. Frequencies of occupations and social contexts as well as hypotheses concerning variability and flexibility of occupational behavior, 2 dependent measures of adaptation, were statistically tested across experimental conditions. In addition, qualitative analysis of 66 hours of videotape was applied to 4 occupational categories: aberrant behaviors, exploring, object-using, and playing. Results illuminated 3 adaptive strategies that supported occupational therapy’s assumption regarding occupation as a medium of adaptation and health. These strategies consisted of: 1) maximizing opportunities for action; 2) increasing behavioral flexibility to support occupation as environmental impoverishment worsened; and 3) maintaining social harmony through occupation. Results simultaneously found that the occupationally depriving nature of subjects’ physical enclosure channeled behavioral aberrations and passivity, thereby promoting functional retardation and adversely impacting health quite substantively. In sum, this study illuminated the range of adaptation of which subjects were and were not capable given their particular social and physical environment. Future research of environmental enrichment focusing on the ontogeny of skill development is suggested.
This descriptive study, using an Occupational Science base, focused on older adults and how they restructured their lives during an eight year period after the death of their spouse. Two distinct processes were seen to occur. The first was a normal, yet individual, grieving process that accompanies any loss; and the second, was the restructuring of the individual’s occupations (daily activities that occupied their time) without the spouse. The subjects (N=122) were recruited from a group of older adults, ages 58-90, who had participated in a two-year longitudinal study done at the University of Utah. Data from three collection periods (At the time of the spouse’s death, two years and eight years later) were used to look at how the participants restructured their occupations during this time period. Psychological measures of self-esteem, coping, and depression were also compared across time.
Results showed that the participants used a variety of strategies to learn the new skills or occupations as they restructured their lives. Strategies included learning by trial and error, learning from friends and relatives, paying someone else to do it or teach them and foregoing the occupation. New occupational skills (daily activities) that had to be learned, tended to follow gender specific lines. The majority believed that they had coped better than they had expected.
Psychological measures of self-esteem, life satisfaction and coping all had a statistically significant decrease two years after the spouse’s death and then a statistically significant increase eight years after the death. Depression decreased at two years then returned to a baseline level by eight years. Loneliness was a recurring theme, even though the participants felt they had coped well and were satisfied with how they had adjusted to life without their spouse.
The selection of a mate is a universal human occupation affecting and affected by one’s life in innumerable ways. This study explored and described the process of selecting a mate in a heterosexual sample of adults living in an urban western society. The 209 subjects who responded to the survey, of whom 20 were also interviewed, were engaged to be married. Analysis of the survey and the interviews produced a model with which to describe this occupation. The occupation, one that may be engaged in several times during a lifetime, consists of four groups of suboccupations. These suboccupations are successive and repetitive. The occupation as a whole and its various elements are influenced by a variety of factors. In turn, the occupation and its elements affect one’s life in a variety of ways. The results presented in this study encompass a portion of the model. They include the suboccupations typical at each stage of the selection process, the affect that these have on daily routines and the amounts of time that engagement in these suboccupations involves. In addition, the results described included factors that affect selection such as the characteristics liked and disliked in a potential mate, the influences one perceives in the selection of a mate and the criteria used to decide whether to continue with a mate. Lastly, the places where one generally meets potential mates is described.
Occupational science is the study of the human as an occupational being, and occupational therapy applies the principles of occupational science to improve the clients’ abilities to select, orchestrate and execute daily occupations in order to enhance their levels of well-being. However, there is not sufficient research on the relationship between daily occupations and subjective well-being.
This study investigated 60 undergraduate Chinese students’ affective experiences during their daily occupations in one week and the relationships between their daily occupational experiences and well-being measures. It was found that the subjects’ well-being measures were best predicted by the percentage of time happy during daily occupations within a week than by the percentage of time unhappy or the time weighted affect score of daily occupation. Additionally, occupational therapy’s concept of active participation was found to have significant effect on the subjects’ subjective well-being. The well-being of subjects who often try to enjoy their daily occupations was significantly higher than that of the other subjects. But the affective experiences during daily occupations of these two groups were not so different. The results suggest that both active participation and happy affective experiences of daily occupations do good for people’s well-being.
In addition, the subjects’ affective experiences during daily occupations of one week were found to be quite stable in terms of the time weighted affect score and the percentages of happy and unhappy daily occupational experiences, although they were different for the weekday and the weekend. This finding suggests that, in normal conditions, people maintain their psychological equilibrium within a period of one week.
The diary-log recording of daily occupational affective experience used in this study was found to be a reliable method to record people’s actual affective experience during daily living.
Suggestions for future research and implications for occupational science and occupational therapy were provided.