"Giving Me the Self-Confidence to Tackle It": Mothers' Experiences Participating In The Engaged Eaters Program, A Caregiver-Mediated Feeding Intervention.

The purpose of this study was to understand caregivers' experience of participating in a caregiver-mediated in-home feeding intervention, the Engaged Eaters Program, for their young autistic child. This qualitative study utilized a thematic approach to analyze post-intervention semi-structured interviews with thirteen mothers of autistic children between the ages of 2 to 7 years after they participated in the intervention. Interview questions focused on the child and family experience, what worked well, what could be improved, and how the intervention integrated into family routines. Four major themes were identified: In-Home Intervention, Parent Skill and Knowledge, Increased Social Participation, and Parent Responsibilities and Challenges. Sub-themes provided descriptions of learning practical tools to support their child, increasing self-efficacy, and impacts on family life. Mothers described an increase in tangible skills that were easily practiced in the home environment that improved their confidence and self-efficacy in feeding their children. They also described how participation did require more work and time commitment for them beyond their regular responsibilities. The caregiver experience is essential to understand for intervention effectiveness while simultaneously addressing child, caregiver, and family needs. By focusing on the mothers' experiences, individualized needs, and self-efficacy, we were able to better understand how integrating an intervention into the family context and daily routines may be beneficial for the whole family.

Benefits and Challenges of a Telehealth Eating and Mealtime Intervention for Autistic Children: Occupational Therapy Practitioners' Perspectives.

Eating and mealtime challenges are common in autistic children, yet intervention access is limited. Telehealth may provide opportunities to address this gap and increase access for underserved families. This study examined the occupational therapy practitioner's perceptions of transitioning from a caregiver-mediated, in-home eating, and mealtime intervention for autistic children to telehealth owing to COVID-19 while considering the impact on accessibility, challenges, and benefits. Family characteristics were compared between groups. Thematic analysis of semi-structured interviews explored practitioners' experiences of telehealth. Statistical findings and themes were directly compared and contrasted. The following three themes emerged: Intervention Adaptations, Challenges for Interventionists, and Benefits of Telehealth. The differences in the families' geographic location were identified. Themes and family characteristic differences supported increased intervention accessibility for the telehealth group. This study provides preliminary evidence that telehealth can increase access to specialized services. There are benefits and challenges to implementing telehealth with families and autistic children.

Accessibility and Inclusion for Families with Children with Autism Spectrum Disorders in Cultural Institutions.

This project aimed to develop a comprehensive set of evaluation tools to assess the accessibility and inclusion of families with children on the autism spectrum in cultural institutions. A stakeholder team conducted interviews, reviewed museum artifacts, and observed museum programming. An evaluation toolkit was constructed by incorporating best practices from current literature and collected data. Tools were piloted and revised after being implemented in the museum context. The Toolkit to Increase Accessibility and Inclusion for Children on the Autism Spectrum and with Sensory Processing Differences in Cultural Institutions was developed with five unique tools, the Dimensions of Accessibility framework, and further resources to provide a self-assessment of cultural institutions. The toolkit can be used broadly across many types of institutions and self-assessment can lead to proactive development of public spaces, institutions, and programming that is accessible and inclusive of diverse groups of people, beyond families with children on the autism spectrum.

Opening the door to university health research: recommendations for increasing accessibility for individuals with intellectual disability.

BACKGROUND: Advances in health equity rely on representation of diverse groups in population health research samples. Despite progress in the diversification of research samples, continued expansion to include systematically excluded groups is needed to address health inequities. One such group that is infrequently represented in population health research are adults with intellectual disability. Individuals with intellectual disability experience pervasive health disparities. Representation in population health research is crucial to determine the root causes of inequity, understand the health of diverse populations, and address health disparities. The purpose of this paper was to develop recommendations for researchers to increase the accessibility of university health research and to support the inclusion of adults with intellectual disability as participants in health research. METHODS: A comprehensive literature review, consultation with the university ethics review board, and review of United States federal regulations was completed to identify barriers to research participation for individuals with intellectual disability. A collaborative stakeholder working group developed recommendations and products to increase the accessibility of university research for participants with intellectual disability. RESULTS: Eleven key barriers to research participation were identified including gaps in researchers' knowledge, lack of trust, accessibility and communication challenges, and systematic exclusion among others. Together the stakeholder working group compiled seven general recommendations for university health researchers to guide inclusion efforts. Recommendations included: 1) address the knowledge gap, 2) build community partnerships, 3) use plain language, 4) simplify consent and assent processes, 5) establish research capacity to consent, 6) offer universal supports and accommodations, and 7) practice accessible dissemination. In addition, four products were created as part of the stakeholder working group to be shared with researchers to support the inclusion of participants with intellectual disability. 1) Supports I Need Checklist, 2) Plain language glossary of health and research terms, 3) Understanding Consent and Assent in Plain Language, 4) Easy-Read Paper Template. CONCLUSION: Community members and individuals with intellectual disability want to be included in research and are eager to engage as research participants. It is the responsibility of the researcher to open the door to university health research. The recommendations discussed in this paper could increase accessibility for a broader range of research participants and, in particular, promote the inclusion of individuals with intellectual disability to advance health equity in population health research.

Health Narratives as a Therapeutic Tool for Health Care Access for People with Intellectual and Developmental Disabilities.

Individuals with intellectual and developmental disabilities (IDD) have unique and complex health care needs that require health care access. Barriers, such as decreased health literacy and a lack of experienced physicians working with this population, make access to inclusive health care increasingly difficult. Therefore, it is important for occupational therapists to intentionally create opportunities to improve healthcare access and utilization for this population. This paper describes the collaborative health narrative development process as well as the inclusion of three examples created by co-authors with intellectual or developmental disability.

Using photovoice with people with intellectual disability to illuminate definitions of health and factors influencing participation in health promotion.

BACKGROUND: Understanding the daily health experiences of people with intellectual disability is necessary to illuminate factors that may be influencing health and health disparities. The objective of this study is to understand how people with intellectual disability participate in and access health promotion. METHODS: Ten adults with intellectual disability engaged in an adapted photovoice study. RESULTS: Four themes emerged: Health Is Who We Are; Health is What We Do; Health Is Our Body, Mind, and Place; and Barriers and Facilitators. Participants communicated an understanding of health, a strong identity of themselves as being healthy, and diverse participation in health promotion. Additionally, participants identified specific resources and support necessary to pursue health. Participants' broad description of health aligns with understandings of the social determinants of health. CONCLUSION: Participant's holistic view of health and experienced factors of health promotion should inform the development and implementation of inclusive health programming for people with intellectual disability.