OBJECTIVE. We identified and described the strategies parents use to support the mealtime participation of their child with autism spectrum disorder (ASD). METHOD. Twelve families with children with ASD (ages 2-7 yr) participated in videotaped mealtime observations. Qualitative content analysis was used to identify strategies families used to facilitate participation. RESULTS. Six categories were identified: (1) parent intervening and ignoring, (2) meal preparation and adaptability, (3) play and imagination, (4) distractions, (5) positive reinforcements, and (6) modeling. Props-common child objects that support the child's mealtime participation-were used in the context of multiple strategies. In addition, increased parental vigilance emerged as an important component of all family mealtimes. CONCLUSION. Families used multiple strategies within and across mealtimes, highlighting the individualistic nature of feeding challenges. Understanding parent mealtime strategies allows for further investigation into the efficacy and development of intervention strategies to promote mealtime participation of children with ASD. Up to 89% of children with autism spectrum disorder (ASD) experience challenging mealtime behaviors (Ledford & Gast, 2006) and are 5 times more likely than their peers to have significant feeding challenges (Sharp et al., 2013). These challenges in ASD have been described as picky eating, excessive intake of a limited variety of foods, resistance to new foods, leaving the table frequently, throwing or dumping food, and detailed or time-intensive mealtime routines (Kral et al., 2013; Marshall et al., 2014). The associated limited food repertoires, sensory challenges, and food refusal behaviors can lead to nutritional deficits, restricted diets, and limitations in a child's ability to participate in family mealtime routines (Ledford & Gast, 2006; Nadon et al., 2011). Feeding challenges can have a profound effect on a child with ASD's participation in mealtime. Children with ASD also have a higher prevalence of disruptive mealtime behaviors (e.g., food refusals, tantrums, crying) than typically developing children (Kral et al., 2015; Zobel-Lachiusa et al., 2015). Challenging mealtime behaviors may include having significant difficulties staying at the table or having a highly selective diet that precludes the child from eating the same foods as the rest of the family (Ledford & Gast, 2006; Sharp et al., 2013; Suarez et al., 2014). Opportunities for the healthful benefits of family mealtime also were minimized, with the family's focus oriented around the child with ASD and the feeding challenges (DeGrace, 2004). A child's feeding challenges not only affect his or her ability to eat with family members but can also change the experience of mealtime for the entire family unit (Ausderau & Juarez, 2013). Family Mealtime Eating as a family has been shown to positively contribute to the physical and social-emotional well-being of family members (Boutelle et al., 2003; Rockett, 2007). Mealtimes help develop famil...
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.
Participatory action research methodologies may empower and protect marginalized individuals; however, they remain underutilized. Limited studies have investigated the impact of participatory action research, specifically on individuals with intellectual disability (ID). This study examines (1) the perspectives of co-researchers with ID on their involvement in the research process and (2) the feasibility of their inclusion based on perspectives of research staff (academic faculty and graduate students without ID). Three co-researchers with ID were interviewed regarding their research participation. Thematic analysis of interviews identified four themes: (1) Shared Experience of Disability, (2) Teaching and Guidance, (3) Acquisition of Skills and Knowledge, and (4) Value of Participation. Research staff reviewed field notes and identified benefits and challenges to feasibility of including co-researchers with ID. Inclusion of co-researchers with ID was found to be both meaningful and feasible.
People with intellectual disability face barriers to participation in health-promoting activities and access to or utilization of healthcare services. These barriers are likely contributing to increased risk for health disparities for people with intellectual disabilities such as greater prevalence of mental and physical health condi-
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