Changes in Caregiver Outcomes After Participation in the Engaged Eaters Program: A Caregiver-Mediated Feeding Intervention for Autistic Children and Their Families.

IMPORTANCE: Caregivers are essential partners in caregiver-mediated interventions that build on family routines and practices. Research identifying how participation as an intervention partner influences caregivers' outcomes, including stress and self-efficacy, is scarce. OBJECTIVE: To evaluate caregiver outcomes (stress, self-efficacy, and positive feeding responses and confidence) after participation in the Engaged Eaters Program. DESIGN: Quasi-experimental pretest-posttest design. SETTING: In-home via telehealth. PARTICIPANTS: Fourteen primary caregivers of an autistic child (ages 2-7 yr) with feeding challenges. INTERVENTION: The Engaged Eaters Program-Telehealth, a caregiver-mediated 6-mo in-home telehealth feeding intervention for autistic children ages 2 to 7 yr that included 24 intervention visits, eight caregiver training modules, and consultation with a dietician. OUTCOMES AND MEASURES: Relationships between child feeding challenge severity and caregiver outcomes and individual differences in caregivers' intervention responses were evaluated. We assessed caregivers' stress (Parenting Stress Index, Fourth Edition Short Form), self-efficacy (Parent Sense of Competence Scale), Positive Feeding Responses and Confidence (PFRC; composite score of items from other assessments), and individual intervention response using pre- to postintervention change in scores. RESULTS: Exploration of individual differences revealed that only caregivers with intake PFRC scores below the mean made significant improvements by the end of the intervention. No significant group-level changes were identified for stress, self-efficacy, or PFRC. Feeding challenge severity was not significantly related to caregiver outcomes. CONCLUSIONS AND RELEVANCE: The results emphasize the importance of considering baseline practices, efficacy, and caregiver confidence when engaging caregivers in intervention. Future research should explore the nuanced relationship between caregiver outcomes and child characteristics. Plain-Language Summary: Caregivers are essential partners with feeding interventions that build on family routines and practices. When working with caregivers, occupational therapists should consider caregivers' readiness for and responses to an intervention because intervention practices may differentially affect caregivers' parenting practices, confidence, and self-efficacy. Caregivers' responses may also affect the overall effectiveness of a caregiver-mediated intervention. Positionality Statement: The term caregiver-mediated in used throughout this article in place of parent-mediated to be inclusive of all types of caregivers.

"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.

The characterization of feeding challenges in autistic children.

LAY ABSTRACT: Feeding challenges are common for autistic children. Currently, research and intervention for feeding challenges focuses on single factors (e.g. behavior or sensory). Research is needed to understand the complexity of feeding challenges. This study provides a comprehensive description of feeding challenges. Furthermore, this study identifies what factors predict the severity and type of feeding challenges experienced by autistic children. Using the Survey for Characterization of Feeding Challenges in Autistic Children-United States, 427 caregivers of autistic children provided information about their child's feeding challenges. Children were between the ages of 2 and 12 with an average age of 8.42 years. Children in the study had a wide variety of feeding difficulties including challenges in early childhood, sensory challenges, difficulty with family mealtime, and variable self-help skills. On average children's feeding challenges were present prior to their autism diagnosis. We found that children who had early feeding challenges had more severe feeding challenges in later childhood. Also, specific early feeding challenges predicted the types of feeding challenges children would have later in childhood. For example, children who had difficulty transitioning to table foods and who continued to restrict their diet over time were more likely to have sensory-based feeding challenges. Results from this study show how feeding challenges present in a wide variety of ways for autistic children. The findings also highlight the importance of screening for feeding challenges in early childhood and collaborating with families to understand individualized feeding challenge experiences. These results could be used to inform evaluation and intervention for feeding.

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.

Understanding health disparities for individuals with intellectual disability using photovoice.

BACKGROUND: Individuals with intellectual disability (ID) are at an increased risk for health disparities that serve as barriers to participation in daily occupations. Understanding the lived experience of individuals with ID can illuminate barriers and facilitators to these health-promoting occupations. Commonly used methods examining health for individuals with ID may not reveal important information about their daily participation potentially due to cognitive or communication limitations. Participatory action research including Photovoice is a viable alternative to meet their unique needs. OBJECTIVE: The purpose of this study was to describe the process of using a Photovoice method with individuals with ID and present results from two participants to understand their meaning of health. METHOD: An analysis of two participants is provided to illustrate the use of Photovoice. RESULTS: Three themes, Personal Identity of Health, Nutrition, and Meaningful Occupation were identified using photos, personal narratives, and focus group data. CONCLUSIONS: Participants had complex definitions of health that are better understood through the composite of narrative descriptions and visual data as compared to more commonly used research methods. The use of a Photovoice method allowed participants to communicate additional depth and complexity of their understanding of health that has not been previously captured.

Use of Props During Mealtime for Children With Autism Spectrum Disorders: Self-Regulation and Reinforcement.

Mealtime is an important family routine commonly affected for families with children with autism spectrum disorders (ASD). Limited research is available regarding strategies families incorporate to support mealtime engagement. The purpose of this study was to explore the frequency and characterize the purpose of Props used during mealtimes with children with ASD. A total of 12 families with a child(ren), N = 14, aged 2 to 7 years, with ASD and mealtime challenges or eating difficulties participated in video-recorded mealtimes in their home. Independent coders analyzed mealtimes for the frequency and purpose of Props (items used to support child participation during mealtime). Props were used by 75% of families ( n = 9); common Props included toys, electronics, and books. Props were used primarily as a self-regulation tool for the child and occasionally as positive reinforcement for specific behaviors. Overall, Props were used to support child engagement in mealtime. Occupational therapists should consider using Props as individualized, accessible, and supportive mealtime interventions for families and children.