This analysis provides a solid foundation for healthcare stakeholders' planning, implementing and evaluating health-promotion activities for people with intellectual disabilities at the policy level and in the community.
Being embedded in social networks is crucial for well-being and health. While this is particularly the case for people with Down syndrome (DS), our knowledge of how their support networks are developed is limited. This article investigates the role of family members in developing and maintaining the social support networks of their adult children with DS. Based on 29 interviews with family members, a grounded theory study was conducted. The Family Building and Connecting (BAC) framework was developed, which distinguishes a "building" and a "connecting" approach. The building approach includes strategies that rely on family members and close friends for building a support network for the person with DS. The connecting approach includes strategies that connect the person with DS to external and often professional resources and services. Distinguishing these approaches is important for future research and for strengthening the support networks of people with DS and their families.
This qualitative case study sought to examine an innovative community outreach nursing program designed to promote healthy aging for more than 250 individuals with intellectual or developmental disabilities living in the community. We analyzed 10 in-depth interviews, one focus group, and various documents using thematic analysis. We researched why the program emerged and found the reasons to be improving the communication with primary care providers, providing person-centered health care, and building on and contributing to existing community-based programs. Findings on what the daily work of community outreach nurses included person-centered health education, advocacy for the safe return home of individuals with intellectual or developmental disabilities, support for staff to understand that health issues can lead to behavior changes of individuals with intellectual or developmental disabilities, and enabling their social participation. This case study may inspire further research or help others develop similar programs.
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
Members of marginalized communities experience health disparities or inequities and are underrepresented in health research. Community engagement in research is a catalyst for researchers to address health disparities while prioritizing community needs and strengthening community capacity. There is limited knowledge on how to engage underrepresented communities throughout the research process, particularly on initiating a partnership and planning research with a community. The purpose of this reflection piece is to share individual cases of research engagement within four communities: immigrant postpartum women, rural residents engaged in farming, low literate and non-English speaking adults, and individuals with intellectual disabilities in the United States. In each case, we explain how we initiated partnerships with the communities, continued to integrate community feedback to guide research questions, and implemented tailored methodologies. Finally, we discuss commonalities and differences in approaches used, tailoring within, and lessons learned when working with these diverse, underrepresented communities during the research process.
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