Marinthea Richter OTD

The COVID-19 pandemic necessitated a transition to telehealth. Research supports the use of telehealth; however, there is a paucity of literature on the ethical considerations of this shift. This study explored ethics through narratives of practitioners’ lived experiences of transitioning to telehealth. Semi-structured interviews were conducted virtually with 10 pediatric health care professionals. Transcripts were analyzed from a narrative phenomenological perspective. Discussed themes include responding to the rapid redirection, collaborating with colleagues and caregivers, applying therapeutic use of self, and evolving pragmatic clinical reasoning. Transitioning to telehealth resulted in ethical dilemmas pertaining to clients and practitioners. The need for additional support was salient to ensure clients received beneficial services that would not cause harm (non-maleficence). Communities of practice formed organically as forums to explore strategies for sharing comprehensive and equitable information (veracity and justice). Knowledge generated through providers’ experiences may inform future guidelines on service delivery transitions.

Neonatal intensive care unit (NICU) co-occupations may impact parent–infant outcomes. The main objective of this study was to explore relationships between parent and infant outcomes based on whether sensory-based interventions (co-occupations) occurred most often between parent–infant dyads or provider/volunteer–infant dyads. Thirty-five families received the Supporting and Enhancing NICU Sensory Experiences (SENSE) program, which includes education defining specific amounts of sensory exposures for infants to receive each day of NICU hospitalization (with a preference for parent delivery). Infant sensory experiences in the NICU were logged, and dyads were grouped based on who conducted most of the sensory interventions with the infant in the NICU into a Parent–Infant Co-occupation group or Other Administered group. The Parent–Infant Co-occupation group had infants with less lethargy on the NICU Network Neurobehavioral Scale (p = .04), and parents with lower scores on the Parental Stress Scale (p = .003) and State-Trait Anxiety Inventory-state (p = .047). Parent–infant engagement in co-occupations was related to parental mental health and infant neurobehavior.

Keywords. development; engagement; environment; family-centered care; intervention; parent mental health; parent–infant interaction; participation; sensory.

The Supporting and Enhancing NICU Sensory Experiences (SENSE) program was developed in 2017 to guide parents in providing age-appropriate positive sensory exposures to their preterm infants each day of NICU hospitalization. The development of the guideline followed a systematic process with an integrative review to identify evidence-supported sensory exposures, interviews and focus groups with stakeholders, and a pilot study and a randomized controlled trial. Recently, another integrative review was conducted to identify newly published studies on sensory exposures in the NICU, and a SENSE advisory team was recruited to inform updates to the guideline to ensure that the latest evidence related to sensory exposures in the NICU was incorporated. Daily sensory activities that are supported by evidence are listed in the parent education booklet, allowing parents autonomy in selecting appropriate sensory activities to engage in with their infants as they grow and develop in the NICU, as well as enabling choices of activities to provide for infants with different levels of medical support. The healthcare team regularly monitors infant tolerance and development as described in the SENSE implementation manual. While implementation training is available, the program can be implemented by NICUs following a self-paced review of the implementation materials. The SENSE program implementation aims to optimize the NICU environment to improve infant brain development and parent confidence while facilitating their transition into their parental roles.

Keywords. high-risk infants, parenting, NICU, sensory stimulation, environmental modification, program, premature

Background. Parents report elevated stress during their infant's NICU hospitalization. Real-time measures may improve our understanding of parental stress in the NICU.

Aim. Examine the feasibility of wearable sensors to describe parental stress in the NICU.

Study design. In this prospective feasibility study of 12 parent-infant dyads, parents wore an Empatica E4 wristband to measure psychophysiological stress via electrodermal activity (EDA) during sensory interventions (holding, massage, reading, touch, etc.) with their babies. Baseline and intervention periods were delineated during which concurrent monitoring and clinical observations of infant behavior and environmental factors were recorded. Feasibility was assessed by investigating recruitment/enrollment, retention/adherence, acceptability, sensor usability, and changes in EDA waveforms based on potential stressors. For the latter, independent samples t-tests and ANOVA were used to examine differences in EDA from baseline to intervention, and the impact of environmental and infant factors on parent stress were visually analyzed against EDA waveforms.

Results. Wearable sensor use in the NICU appeared feasible as assessed by all methods. Preliminary data analysis indicated that overall parent EDA levels during parent-infant interactions were low, and engagement in sensory intervention(s) led to a non-significant increase in parental EDA, measured by both skin conductance levels and non-specific skin conductance responses. Three main patterns of EDA emerged: a temporary increase in EDA at the beginning of the intervention followed by a decrease and plateau, a plateau in EDA from baseline to intervention, and a gradual rise in EDA throughout intervention. Specific environmental and infant factors, such as infant stress and health care providers entering the room, appeared to impact parent stress levels.

Conclusion. Although these preliminary findings provide support for use of EDA in the NICU, future studies are needed.

The Baby Bridge program is an implementation strategy to improve access to in-person early therapy services following neonatal intensive care unit (NICU) discharge. The objective of this study was to evaluate acceptability of Baby Bridge telehealth services among health care providers. Interviews with health care providers were conducted, transcribed, and coded in NVivo. Deductive analysis was used to organize data into negative and positive comments, suggestions for optimization, and perceptions about the first visit. Next, a conventional approach was used to organize the data into themes. Telehealth was viewed as an acceptable, but not necessarily preferable, form of Baby Bridge delivery. Providers identified how telehealth may improve access to care, but with potential challenges in delivery. Suggestions for optimization of the Baby Bridge telehealth model were proposed. Identified themes included delivery model, family demographics, therapist and organizational characteristics, parent engagement, and therapy facilitation. These findings provide important insights to consider when transitioning from in-person therapy to telehealth.

Keywords. family-centered practice; neonate; pediatrics; qualitative research; services.

The neonatal intensive care unit (NICU) is a dynamic system with multiple stakeholders and contextual factors impacting the implementation of novel practices. This qualitative study aimed to (a) define health care professionals’ perceptions on the feasibility of implementing a sensory intervention to study its efficacy, and (b) elaborate on transactions occurring between NICU health care professionals and the proposed research. Eleven NICU professionals participated in one of three focus groups that were audio-recorded, transcribed, and analyzed thematically in NVivo first descriptively and then interpretively through a transactionalism lens. The health care professionals implied the intervention was feasible, but provided multiple suggestions to enhance implementation. The modification of familiar occupational practices, ingrained habits, and the potential impact on the collective occupational performance of NICU community members arose. Understanding occupations within the NICU as transactional allows for a broader view of occupational engagement and enhances knowledge of the nuances related to implementing clinical changes.

Keywords. qualitative research, neonate, occupational engagement, occupational science, occupational performance

Background. Parent-infant interaction is poorly understood among high-risk dyads in NICU settings. No parent-infant interaction measures are specifically designed for preterm infants within the NICU nor account for the education NICU parents receive to tailor their interactions based on the infant's cues.

Aim. To improve our understanding of a measure of parent-infant interaction in the NICU, we investigated relationships between parent-infant interaction scores on the Nursing Child Assessment Feeding Scale (NCAFS) and 1) socio-demographic and medical factors, 2) parent mental health and confidence, and 3) enhanced parental education (delivered as part of the Supporting and Enhancing NICU Sensory Experiences program) on tailoring interactions based on the infant's cues.

Method. Twenty-six preterm infants (born ≤32 weeks) had a video recorded oral feeding conducted by a parent in the NICU when the infant was 34–48 weeks postmenstrual age. A certified evaluator scored parent-infant interaction from the videos using the NCAFS.

Results. Seventeen (65 %) parent-infant dyads scored below the 10th percentile on the total NCAFS score. Despite it being well-understood that parent-infant interaction is related to sociodemographic factors and parental mental health, there were no relationships between these factors and NCAFS scores in this study. Dyads who received enhanced parent education (n = 15) had lower NCAFS scores than dyads receiving usual care (n = 11) (p = 0.01).

Conclusion. It remains unclear if the standard measure of parent-infant interaction, NCAFS, captured positive and negative interactions in context of assessment of a high-risk dyad within the NICU setting. The utility of the NCAFS with preterm infants in the NICU was not supported by this study.

Keywords. Premature infant; Human development; Parents; Interactions

The COVID-19 pandemic led to stay-at-home mandates and lockdowns around the globe. During this time of occupational disruption and social distancing measures, many engaged through online environments. Social media are ever-increasing hosts of occupation and participation, rich with research opportunities. In this study, we explored COVID-19 experiences by analyzing parody videos posted on YouTube by various content creators. We analyzed the lyrics of 27 viral videos (accrued 1 million or more views) by 20 content creators. Using a transactional framework, we identified five themes related to occupational disruption in the lyrics and explored the polarity of the concepts within each theme: old norms vs. new normal, time expanded vs. time condensed, control seeking vs. lack of control, social isolation vs. excess socialization, and cynicism vs. hope. Our findings demonstrated the complex transactions between previous habits and routines, changing spaces of occupation, and meaning of daily occupations within evolving social, economic, and physical contexts. While this study showcased YouTube videos as one untapped source of contextualized knowledge for occupational science, there is a need for further exploration of methodological and ethical challenges of studying digital content.

Background. Mothers play an important role in providing positive sensory experiences to their infants during NICU hospitalization. However, little is known regarding maternal perceptions about sensory-based interventions in the NICU. Further, understanding maternal perceptions was an important part of the process during development of the Supporting and Enhancing NICU Sensory Experiences (SENSE) program.

Methods. Twenty mothers of very preterm infants were interviewed after NICU discharge and asked open-ended questions about sensory-based interventions they performed in the NICU and probed about their perceptions related to the development of a sensory-based guideline and the use of volunteers to provide sensory-based interventions when unable to be present in the NICU. Interviews were transcribed and uploaded into NVivoV.12 for content analysis.

Results. Mothers reported that kangaroo care was a common sensory intervention they performed in the NICU. Of the 18 mothers who commented on the development of a sensory-based guideline, 17 (94%) said they would be accepting of one. Among 19 mothers, 18 (95%) supported volunteers conducting sensory-based interventions in their absence. Identified themes included: 1) Perceptions about development of a sensory-based guideline, 2) Perceptions of interactions with healthcare providers, 3) Maternal participation in sensory interventions, 4) Maternal experience, and 5) Emotions from mothers.

Conclusion. Maternal perceptions regarding the development of a sensory-based guideline were favorable, and the SENSE program has since been finalized after incorporating important insights learned from stakeholders in this study. Mothers' perceptions were tied to their NICU experiences, which elicited strong emotions. These findings highlight important considerations when developing family-centered interventions.

Keywords. development, sensory, therapy, NICU (neonatal intensive care unit), qualitative study

Aim. To describe neurodevelopmental outcomes during early childhood among infants born very preterm and define the relationships between neurobehavior of very preterm infants and neurodevelopmental outcomes at 4 years.

Methods. Forty‐eight infants born ≤32 weeks gestation had neurobehavior assessed at term equivalent age using the NICU Network Neurobehavioral Scale (NNNS). Outcomes at 4 years were assessed with the Ages and Stages Questionnaire (ASQ‐3), the Sensory Profile – Short Form (SF), and the Behavior Rating Inventory of Executive Function – Preschool version (BRIEF‐P).

Results. At 4 years, 23 (48%) children had at least one below average score on the ASQ‐3, 15 (31%) had a below average total score on the Sensory Profile‐SF, and 3 (6%) had an abnormal total score on the BRIEF‐P. Children with lower fine motor scores at 4 years had poorer orientation (p=.03) and self‐regulation (p=.03), hypertonia (p=.01), and more sub‐optimal reflexes (p=.02) as neonates. Children with lower gross motor scores at 4 years of age had more sub-optimal reflexes (p=.03) and lethargy (p=.046) as neonates. Children with tactile sensitivity at 4 years of age had poorer orientation (p=.01) and tolerance of handling (p=.03) as neonates. Children with decreased responsiveness at 4 years of age had low arousal (p=.02) as neonates, and those with poor auditory filtering at age 4 years had hypotonia (p=.03) as neonates.

Conclusion. Early neurobehavior is related to neurodevelopmental outcome in early childhood.

Purpose. The purpose of this study was to investigate the oral care experiences and challenges encountered by children with Down syndrome.

Methods. Participants were 372 parents of five- to 14-year-olds with Down syndrome. Parents completed a 48-item questionnaire designed by the authors to elicit information about oral care in the home and dental office. Descriptive statistics were used to examine oral care variables.

Results. Parents reported difficulty across almost all oral care variables, including oral care in the home, oral care at the dentist, and access to oral care. Approximately one-third of parent respondents reported that toothbrushing was difficult and brushing occurred four or fewer days a week. Over half of the respondents reported that it was difficult to have a dental professional clean their child's teeth, uncooperative behaviors and sensory sensitivities increased in the office, and those behaviors and sensitivities made care challenging. Most respondents reported having a dental home for their child, that it was difficult locating their dentist, and that finances limited visits.

Conclusions. Children with Down syndrome experience difficulties and barriers to care in both the home and dental office settings.