Mary Lawlor ScD, OTR/L, FAOTA

For the 2023 Eleanor Clarke Slagle Lecture, Dr. Mary Lawlor discusses how some events that may seem inconsequential, just moments in passing, may carry the weight of what really matters. Tentative points of connection are often gateways to the really big things that are difficult to give voice to or reflect on in our practice worlds. What could little things mean, why do they matter, and what work do they do to help us understand each other well enough to effectively “partner up”? The little things may provide opportunities to identify and explore new grounds for healing, connectedness, and understanding in occupational therapy practice.

Oral health is a vital component of overall health. Children from underserved, minoritized populations (i.e., Black/African Americans, autistic children) are at even greater risk for experiencing oral health disparities. This study aims to illuminate the oral health knowledge, attitudes, and practices of Black/African American caregivers of autistic and non-autistic children. Black/African American caregivers of children (4-to-14 years) on the autism spectrum (n = 65) or not on the autism spectrum (n = 60), participated in a survey, with input from literature reviews, interviews, previous research, and reviews by experts. Caregivers demonstrated basic knowledge of oral health with significantly lower scores for caregivers of autistic children. Caregivers care about oral health and would like to increase their knowledge. Significant differences in oral care practices were found between the autistic and non-autistic groups. Caregivers reported they can access dental services with relative ease, including finding their child a dentist, scheduling a dental appointment, and accessing transportation (personal or public) to attend the visit. Black/African American caregivers of autistic children and children without autism seem to have foundational knowledge about oral health and basic practices; however, they are interested in learning more. Therefore, tailored oral health education programs may help mitigate oral health disparities for Black/African American families.

Keywords. autism; African Americans; oral health; health equity; children

This article introduces social network analysis (SNA), a theoretical perspective accompanied by a set of methodologies, to occupational science. The convergence of SNA and occupational science is timely for both fields. By providing methodological approaches that flesh out a structural view of social networks, SNA measurements and mathematical terminology can effectively bridge the complexity of diverse interpretive frameworks used to understand occupational engagement and other constructs for humans as socially occupied beings. By focusing attention on the relationship of occupations to connectivity between agents, occupational science can make significant contributions to the ways in which the mattering or meaning of what people do with others nurtures the development and sustainability of social networks. We provide a brief history and roots of SNA in naturalistic observation, current terminology, and four widely used SNA research designs: egocentric, sociometric, sequenced, and two-mode. Drawing examples from our decade-long journey using SNA with narrative phenomenological conceptual frameworks, we illustrate how we used SNA with experience-near ethnographies to meet different objectives. In the discussion, we reflect on the parallax view created by the synergies between the disciplines and how the disruptive-productive effects that occur with mixing narrative phenomenology and SNA methods could address (mutual) methodological gaps that have seemingly limited conceptual development in the social sciences.

Keywords. Occupational science, Sociality, Intersubjectivity, Connectivity, Social network analysis, Social structure, Network interventions

Participation refers to a state of health in which a person is able to fully engage in roles and life situations. Adults living with and beyond cancer often report persistent participation restrictions that affect their productivity and quality of life. The American Occupational Therapy Foundation convened a group of scientists from seven different disciplines in a Planning Grant Collective (PGC) to stimulate research to identify scalable ways to preserve and optimize participation among cancer survivors. Participants identified challenges, prioritized solutions, and generated novel research questions that move beyond symptom and impairment mitigation as outcomes to identify interventions that improve participation in roles and life situations. This article summarizes the PGC discussion and recommendations regarding three challenges: (a) the dynamic and multi-faceted nature of participation, (b) a need to integrate the concept of participation within the culture of oncology, and (c) identification of priority areas in which new lines of research regarding participation would be most impactful.

Keywords. cancer, everyday occupations, functional outcomes, participation, disability

Objective. To examine characteristics of caregiving from the perspectives of adolescents and young adults (AYAs) with spinal cord injuries (SCIs) and their informal caregivers to address outstanding gaps in knowledge relating to definitions of caregiving and its associated practices for this population.

Methods. A multiphase qualitative design was applied, using phenomenological and narrative methods to capture data in participants' homes and communities. Participants were recruited from rehabilitation hospitals and community organizations throughout Los Angeles County, California. Inclusion criteria for AYAs included being 15–22 years old, having acquired an SCI within the previous 5 years, and using a wheelchair for mobility. The AYAs nominated persons they identified as primary caregivers to also participate. Data were collected through individual and group interviews as well as activity observations.

Results. Data from the 17 participants (9 AYAs and 8 informal, primary caregivers) revealed ways in which the meaning of caregiving varied among dyads. Caregiving practices extended beyond physical assistance to include support for a range of day-to-day activities spanning from practical needs to facilitating developmental trajectories. Although AYAs expressed ideas about preferred caregiver characteristics, care partnerships appeared to be guided more by availability than preference.

Conclusion. Phenomenological analysis revealed that the meaning of “caregiving” and its associated practices are highly individualized for AYAs with SCIs. Caregiving is rooted in personal needs related to effects of SCI and developmental goals. Everyday practices are shaped by individual relationships and the beliefs of AYAs and their caregivers. Addressing influences of caregiving on long-term health and function may require attention to developmental processes, caregiver “fit,” and ways care is, or can be, distributed throughout broader networks according to personal needs and preferences.

Experiences are multidimensional, impactful, and often rooted in occupations, where meaning is felt, and people engage with others and learn about themselves and the world. Experiences are complex phenomena influenced by a multitude of factors, and they have a strong connection to health and well-being. Studies of lived experiences have been central to the development of occupational science. Capturing the essence of experiences can be challenging, but integrating data from multiple perspectives in research designs is a valuable strategy to address challenges to understanding experiences, including their interpersonal, interdependent, and intersubjective natures. This is especially critical for understanding circumstances in which two or more people share experiences or coordinate action together, such as in cases of caregiving. In this paper, we outline the strength and utility of methodological approaches that integrate multiple perspectives in order to understand experiences as they are situated beyond the individual. We draw on original data from a narrative and phenomenological study of lived experiences among adolescents and young adults with spinal cord injuries and their caregivers as an exemplar for discussion. Relative contributions to occupational science and limitations of a multi-perspective approach are considered.

Keywords. Occupational science, Qualitative research, Personal narratives, Methods, Caregivers, Spinal cord injuries

Research on autism spectrum disorder (ASD) and on Alzheimer's Disease (AD) and other types of dementia describes a behaviour called 'wandering', a term that denotes movement through space lacking intention or exact destination, as when a person is disoriented or not self-aware. In the U.S., 'wandering' in both ASD and AD has been examined mostly from a management and prevention perspective. It prioritizes safety while primarily overlooking personal experiences of those who 'wander' and their families, thus limiting the range of potentially effective strategies to address this issue. Communicative challenges faced by many people diagnosed with ASD and AD further obscure the experiential, existential aspects of 'wandering'. This article reflects an increasing concern of social science scholars interested in whether and how the conceptual and practical strategies to address 'wandering' are informed by the situated experiences of people with cognitive and developmental disabilities and their families. We examine 'wandering' at the intersections of personal experience, family life, clinical practice, public health policy, and legislation, as a conceptually rich site where notions of personhood, subjectivity, intentionality, and quality of life powerfully and consequentially converge to impact the lives of many people with ASD and AD, and their families. We draw upon critical autism studies describing how attributions of personhood, subjectivity, intentionality, rational agency, and moral autonomy of people with ASD have been contingent upon the norms and conventions governing movement of the human body through space (Hilton, Afr Am Rev 50(2):221-235, 2017). When this movement is deemed aberrant, the person may be construed as irrational, a danger to self because of a lack of self-awareness, and a danger to others because of a lack of empathy. These attributions put the person at risk of being excluded from the considerations and, more importantly, the obligations of the 'moral community' to ensure that he or she has a 'good human life' (Barnbaum, The Ethics of Autism: Among Them but not of Them. Indiana University Press, Bloomington, 2008; Silvers and Francis, Metaphilosophy 40(3/4):475-498, 2009). Using ethnographic, narrative phenomenological (Mattingly, The Paradox of Hope: Journeys through a Clinical Borderland. Berkeley: University of California Press, 2010), and medical humanities (Charon, JAMA 286:1897-1902, 2001; Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press, 2006) approaches, we examine multiple perspectives on 'wandering' in ASD and AD across narrative discourse genres, institutional contexts, and media of representation. We argue for an extension of the prevention and management view to focus not only on safety but also on what phenomenologist Merleau-Ponty (1962) called "having a world" (p. 146). The analysis is intended to inform clinical practice, policy and public health efforts to enhance understanding of first and second person perspectives on 'wandering' in order to improve the participation and quality of life of people with ASD and AD who 'wander', and their families.

In this article, we draw on narrative phenomenological (Mattingly, 2010) and ethnographic projects to investigate how phenomenology may contribute to understanding how practical, experientially gained, expertise is cultivated in extraordinary circumstances. The lived world of autism provides a compelling context for such an exploration. Drawing on ethnographic data, we present arguments related to how a phenomenological approach to understanding autism can be productive by examining the cultivation of expertise and the contagion of knowledge and understanding. Family expertise that is grounded in lived experience often reveals the limitations of both public knowledge and scientific evidence and is generative of a kind of practical knowledge that warrants diffusion. Consideration is given to the specific contributions of a phenomenological approach to understanding autism and learning in collective engagements. Contagion as both a facilitative and positive phenomenon and a potentially stressful or harmful development is discussed.

Keywords. narrative, family, intersubjectivity, learning, phenomenology

Substantial scholarship has been generated in medical anthropology and other social science fields on typically developing child-parent-doctor interactions during health care visits. This article contributes an ethnographic, longitudinal, discourse analytic account of a child with autism spectrum disorder (ASD)-parent-doctor interactions that occur during pediatric and neurology visits. The analysis shows that when a child with ASD walks into the doctor's office, the tacit expectations about the visit may have to be renegotiated to facilitate the child's, the parent's, and the doctor's participation in the interaction. A successful visit then becomes a hard-won achievement that requires the interactional and relational work of all three participants. We demonstrate that communicative and sensory limitations imposed by ASD present unique challenges to all the participants and consider how health care disparities may invade the pediatric encounter, making visible the structural and interactional processes that engender them.

'Wandering' and 'elopement' have been identified as common in autism, affecting half of all diagnosed children ages four to ten, yet families rarely receive advice from practitioners even after the fact. Family perspectives have been missing from the literature as well as from public health and policy debates on how and when to respond to this problem. The problem of 'wandering' and 'elopement' reveals a complex intersection of larger issues encountered by families of children with autism. To consider these issues, this article examines 'wandering' and 'elopement' from the perspectives of African American mothers of children with autism, an underrepresented group in autism research. We consider how the mothers experience these behaviors and the response to these behaviors by professionals, such as service coordinators and law enforcement personnel working within various jurisdictions that become involved with the problem. We analyze the mothers' narratives about 'wandering' and 'elopement' drawn from ethnographic interviews that were collected between October 1, 2009 and August 31, 2012. These interviews were part of a larger project on disparities in autism diagnosis and services that followed a cohort of 25 four to ten-year old children. Drawing on narrative, phenomenological and interpretive traditions, we trace the mothers' developing understandings of 'wandering' and 'elopement' over time, and show how these understandings become elaborated and transformed. This article provides a nuanced, moment-to-moment and longitudinal picture of the mothers' experiences of 'wandering' and 'elopement' that enriches the cross-sectional view of large-scale surveys about the problem and contributes unique insights at the family and community levels. Implications for professional awareness, clinical practice and service provision are also suggested.

Some therapeutic practices, and occupational therapy in particular, require heightened forms of engagement and involve jointly coordinated actions that are grounded in intersubjective processes. These interactional processes enable people to be together in particular ways, co-create and share experiences, and coordinate actions. Qualities of engagement in therapeutic practices are analyzed in terms of the interrelatedness of the social actors and the investment in the doing of the occupations. Interpretive examples are provided from an interdisciplinary, longitudinal, urban ethnographic study of a cohort of African-American children, their families, and the practitioners with whom they engage in healthcare encounters. Findings include the use of vehicles for engagement to enhance participation, transactional features of jointly constructed clinical activities, and experiential and developmental aspects of children's engagement in therapeutic practices. Engagement is discussed as a mediator of effectiveness and contributing factor to the “mattering” of therapy. Implications for clinical and research practices are provided.

Keywords. sociality, participation, action and narrative

This paper examines a statistics debate among African American caregivers raising children with disabilities for insights into the work of "African American mothering." Using ethnographic, narrative and discourse analyses, we delineate the work that African American mothers do—in and beyond this conversation—to cross ideological and epistemological boundaries around race and disability. Their work entails choosing to be an "I" and, in some cases, actively resisting being seen as a "they" and/or part of a collective "we" in order to chart alternative futures for themselves and their children.

The articles in the Special Issue, "Rethinking Autism, Rethinking Anthropology," provide a ground for demonstrating substantive contributions to understandings of autism and mark the dilemmas and tensions inherent in anthropological approaches. Comments explore the ways in which authors attend to demarcation of the social world, establishment and negotiation of expertise, juxtaposition of autism as a phenomenon of interest and as an exemplar of sociality, and management of structured and improvisational approaches to the study of engagements in real life. The dilemmas and tensions that are briefly described here are only a partial list of still uncultivated spaces where autism and anthropology can–should–do meet.

The purpose of this paper is to explore theoretical and developmental foundations for interpreting children’s engagement with activity in the typically social worlds of childhood. Drawing upon longitudinal ethnographic data, I argue for the need to reframe the study of childhood occupation to the study of “socially occupied beings” as a means of enhancing our understanding of children’s experiences. The focus is on childhood experiences that are socially constructed through adult and child co-created action sequences. The unit of analysis is constructed around a child or children, their adult partners in action, the social world of engagement, and the cultural context. The interpretive focus is on acts and actors, acting in a socially constructed world. Two microethnographic examples are provided; the first relates to an observation of a mother and her children playing in a hospital corridor and the second to an occupational therapist and child engaged in jointly constructed activity within a therapy session. These segments illustrate pragmatic and conceptual understandings of the interconnectedness of social relatedness, intersubjectivity, social action, and engagement. Further development of theoretical and research models is needed to capture the essence of children as socially occupied beings, doing something with someone else that matters.

The purpose of this paper is to analyze ways of perceiving, knowing, and being with others while engaging in qualitative and ethnographic research. As occupational therapists acquire research expertise and embark on research trajectories, they bring their clinical legacy into the research arena. The ability to conduct qualitative and ethnographic projects may require a reconfiguration of the clinical gaze of occupational therapists. This transformation is complex and also involves acquiring and adopting a stance that alters relational and interpersonal processes and results in new ways of seeing and being. I draw upon experiences in training, mentoring, and supervising therapists who embark on ethnographic research, as well as my own research practices, to illustrate points of intersection and divergence between the clinical gaze and ethnographic lens. Artistic metaphors are also used to highlight aspects of the interactional and intersubjective processes intrinsic to ethnographic practices. I argue that ethnographers are continually evaluating and negotiating their stance in the field. The clinician who becomes an ethnographer faces unique challenges to his or her stance in the midst of moment to moment encounters as well as over time in the course of prolonged engagement.

This article considers the September 11 tragedy as an event that has created a powerful experience—an astonishing and unthinkable "breach" from the expected and routine—that has riveted the American public and provoked personal storytelling. September 11 and its aftermath have provided an occasion for rethinking and reworking cultural identity. We explore how September 11 and subsequent events have been experienced, constructed, and narrated by African American women, primarily from working-class and low-income backgrounds. These stories, and the commentaries and discussions that surround them, provide vehicles for these women to ponder what sort of social contexts they inhabit, within what sort of subject positions they are placed, and how these may be shifting in light of the attacks and America's "War on Terrorism".

Ethnographic research involves the creation and ongoing renegotiations of relationships between researchers and informants. Prolonged engagement contributes to the complexity as relationships deepen and shift over time and participants accumulate a substantial reservoir of shared experiences. Reflections about the relationships we have co-constructed with informants in several research projects have contributed to our identification of several critical aspects of building and maintaining researcher–informant relationships in cross-cultural research. Aspects of relationship work specifically related to conducting ethnography with children, within the communities in which researchers live, and within the practice of occupational therapy are discussed.

This article explores a paradox—the simultaneous cultivation and suppression of "healing dramas" by pediatric rehabilitation therapists. Dramatic moments are defined as ones in which the routine exercises and treatment activities of therapeutic practice are transformed into narrative plots. These improvisational plots involve multiple characters, risks, suspense, and above all, a heightened sense that something is at stake. Experience itself becomes the focus of attention for the patient. Based upon ethnographic research in Chicago and Los Angeles, this article offers an anatomy of two such moments, investigating not only how healing dramas are constructed between patients and healers but how and why institutional discourses and practices invite their abandonment.

This paper argues for the importance of eliciting stories when trying to understand the point of view and personal experience of one's informants. It also outlines one approach to eliciting and analyzing narrative data as part of a complex and multi-faceted ethnographic study. The paper draws upon ethnographic research among African-American families who have children with serious illnesses or disabilities. However, it is not a report of research findings per se. Rather, it is primarily a conceptual paper that addresses narrative as a research method. Features that distinguish a story from other sorts of discourse are sketched and current discussions in the occupational therapy and social science literature concerning the importance of narrative are examined. The heart of the paper focuses on a single narrative interview and examines what we learn about the client and family caregiver perspective through stories.

The recent movement toward family-centered care, which has been propelled by the implementation of the Education for All Handicapped Children Amendments of 1986, poses considerable challenges to professionals trained in client-centered models of service delivery. These challenges are compounded by the fact that our understanding of family-centered care lags considerably behind our attempts to implement responsive and efficacious services. When practitioners include family members more integrally as collaborators in pediatric treatment, their perceptions about families and the nature of the therapeutic experience is affected. In this article, we present a number of critical dilemmas that are based on data drawn from ethnographic research, descriptive studies, and training seminars we conducted with pediatric practitioners and parents of children with special heath care needs. These dilemmas highlight the complexities involved in building effective partnerships among all the key players, the influence of multiple cultural worlds on everyday practices, and the need to provide supports to practitioners for the emotional and social dimensions of practice. Implications for practice and future research are presented.

This interdisciplinary inservice training project at the University of Illinois at Chicago was designed to improve early childhood occupational and physical therapy services by developing, implementing, evaluating, and disseminating a comprehensive training model. The competency-based program was designed to address the developmental needs of practitioners, from foundational skills to advanced practice competencies. The program allowed therapists who were working to remain in the provider pool while enhancing their skills. Participants collaborated with project faculty and clinical supervisors in developing individualized learning contracts. Foundational Level therapists enrolled in a lecture series and completed an extensive supervised practicum. Training at the Enrichment Level included completion of a continuing education program involving didactic sessions and videotape case analyses. Advanced Level training addressed highly specialized competencies that required practicum experiences supervised by qualified practitioners. Follow-up activities for participating therapists included seminar meetings emphasizing faculty and peer review. Appendices contain competency statements; a parent advisory committee report; the Individual Learning Plan; various evaluation forms; a reprint of an article by Mary C. Lawlor and Elizabeth A. Cada titled "Partnerships between Therapists, Parents, and Children"; and results of a survey of 276 occupational and physical therapists in Illinois. A participant's guide titled "Forming Partnerships with Families" is also provided. It includes information and exercises for a self-paced, video-based course dealing with the family, interpersonal relationships, the multidiscilinary conference meeting, and development of the Individualized Family Service Plan. The participant's guide is accompanied by three videotape recordings.

This investigation was designed to gather descriptive data on the clinical practice patterns of occupational therapists working with infants and young children. One hundred nineteen therapists entered the study, and 118 completed the interview, yielding a response rate of 99.4%. The therapists were highly experienced, with a mean of 9.47 years working in pediatrics. The school setting was the most common type of facility in which therapists served infants and young children and accounted for 37.3% of the sample. The majority of the respondents (67.8%) were members of formally identified teams. Although 80.5% ofthe therapists served very young children (aged birth to 12 months), no therapists served this population exclusively. Considerable variability in models ofservice provision, team structures, and assessment and treatment practices were found. Additionally, there was a lack of consensus on the unique contributions of occupational therapy and diverse opinions regarding the importance of selected frames of reference. Implications of the findings on professional initiatives to enhance practice are discussed.