Indicators of health in Down syndrome: A virtual focus group study with patients and their parents

Abstract

Background: Down syndrome has a unique medical and psychological profile. To date, few studies have asked individuals with Down syndrome about their views of health.Methods: Eight focus groups of 20 parents and 8 individuals with Down syndrome, were conducted virtually via videoconferencing to obtain participants' views of health indicators. Focus group moderators employed some modifications for individuals with Down syndrome, including simplified language and use of graphics.Transcripts were coded using a hybrid inductive/deductive framework and thematically analysed using the Framework Method. Results: We describe lessons learned in conducting virtual focus groups of individuals with Down syndrome and their parents. Individuals with Down syndrome could describe their views of health indicators and identified many of the same topics as their parents. Both groups discussed physical, mental, and social health components. However, people with Down syndrome gave a more restricted range of examples, but with different nuances than parents. Conclusion: Partcipants discussed physical, social, and mental well-being components of health in Down syndrome. Interviewing individuals with Down syndrome in virtual focus groups with appropriate modifications added important self-report health information.

Views on the impact of the COVID‐19 pandemic on health in people with Down syndrome from diverse backgrounds

“…Across eight FGs, eight adolescents (ages 13–21 years old) with DS and 20 parents of individuals with DS (ages 0–21 years old) participated (Table 1) (Santoro, Cabrera, Haugen, et al, 2023). Our online survey was completed by 109 parents, of whom 68 were English‐speaking parents who had children with DS who were Black, African American, of African descent, or of mixed race and 41 were primarily Spanish‐speaking parents of individuals with DS (Table 1) (Krell et al, 2023)…”

“…We conducted four virtual FGs of teens and young adults with DS, and four virtual FGs of parents of individuals with DS using Zoom videoconferencing technology between November 2020 and March 2021. Individuals included in the FGs were English speaking, had access to Zoom, and were either (1) an individual with DS aged 13–21 or (2) a parent of an individual with DS aged 0–21 (Santoro, Cabrera, Haugen, et al, 2023). Each parent included was the primary caregiver of their child with DS, and the individuals with DS were children of the parents that participated in the study (Santoro, Cabrera, Haugen, et al, 2023).…”

“…FG recruitment : Participants were recruited through the Massachusetts General Hospital Down Syndrome Program, the Massachusetts Down Syndrome Congress (MDSC), the LuMind IDSC Down Syndrome Foundation, and the NIH's DS‐Connect® patient registry. Potential participants were sent information describing the study as well as a link to an electronic screening form on REDCap, which collected demographic information (Harris et al, 2019; Harris et al, 2009; Santoro, Cabrera, Haugen, et al, 2023). Eligible parents were then contacted by the research team to further discuss the study and schedule FGs for them and their child with DS, as applicable.…”

“…At the start of the FGs for individuals with DS, consent information was reviewed, and consent/assent was provided. During the FGs, two researchers facilitated a “semi‐structured discussion” (Santoro, Cabrera, et al, 2023); individuals with DS and parents were asked to discuss health conceptually and the specific social, emotional, and physical factors that contribute to their heath or the health of their child as it pertains to DS (Santoro, Cabrera, Co, et al, 2023; Santoro, Cabrera, Haugen et al, 2023). In all FGs, the topic of the COVID‐19 pandemic arose spontaneously.…”

“…This study on the impact of COVID‐19 pandemic was part of two larger studies (Krell et al, 2023; Santoro, Cabrera, Haugen, et al, 2023). We used a mixed‐methods convergent design where qualitative data from FGs and quantitative data from a survey were collected in parallel and analyzed separately, but then merged together for comparison and integration through narrative (Fetters et al, 2013).…”