Inclusion of children with disabilities in qualitative health research: A scoping review

Abstract

Background Children with disabilities have the right to participate in health research so their priorities, needs, and experiences are included. Health research based primarily on adult report risks misrepresenting children with disabilities and their needs, and contributes to exclusion and a lack of diversity in the experiences being captured. Prioritizing the participation of children with disabilities enhances the relevance, meaningfulness, and impact of research. Methods A scoping review was conducted to critically examine the participation of children with disabilities in qualitative health research. The electronic databases PubMed, PsychInfo, Embase, and Google Scholar were searched. Inclusion criteria included qualitative health studies conducted with children with disabilities, published between 2007 and 2020, and written in English. Articles were screened by two reviewers and the synthesis of data was performed using numeric and content analysis. Results A total of 62 studies met inclusion criteria. Rationales for including children with disabilities included child-focused, medical model of disability, and disability rights rationales. Participation of children with disabilities in qualitative health research was limited, with the majority of studies conducting research on rather than in partnership with or by children. Findings emphasize that children with disabilities are not participating in the design and implementation of health research. Conclusion Further effort should be made by health researchers to incorporate children with a broad range of impairments drawing on theory and methodology from disability and childhood studies and collaborating with people who have expertise in these areas. Furthermore, an array of multi-method inclusive, accessible, adaptable, and non-ableist methods should be available to enable different ways of expression.

Adapting an intervention to support young caregivers of cancer survivors: A study protocol

“…For youth, in addition to the interviews, arts-based participatory techniques previously developed by the co-PIs in research with youth, including young caregivers, will also be used [ 9 – 12 ]. These methods will include warm-up activities, writing, drawing, and photo elicitation, and are considered best practice in research with young people [ 13 , 14 ]. For youth, because of the additional data collection methods used, two data collection sessions will occur.…”

Adding some “Cs”: Expanding positive youth development to include disability and identity.

“…This group could benefit from a shift in focus to positive development. As noted previously, YWD are often viewed from a deficit perspective and have low participation in health research, as disability is often listed as an exclusion criterion (Njelesani et al, 2022). This could be a contributing factor to the lack of YWD representation in developmental research.…”

“…Despite rising rates, YWD as a group have received relatively little attention in the developmental psychology literature. Existing research on YWD tends to focus on impairment, taking a medical model perspective of needing to treat or cure a disability (Curran & Runswick-Cole, 2014; Njelesani et al, 2022). Studies of childhood populations have recognized diversity in age, gender, and ethnicity, but often miss disability (Curran & Runswick-Cole, 2014).…”

Convergence of Occupational Science and Occupational Therapy: Updates on OTJR’s Occupational Science Section

“…This greater connection to the occupational therapy profession will be achieved in part through the Occupational Science Section's publication of high-quality occupational science research that provides evidence on occupation-based, client-centered, and contextual practices, thus advancing the founding vision of the field of occupational therapy (AOTA, 2020). As the new Associate Editor of the Occupational Science Section, I bring my commitment of advancing the mobilization of occupational science knowledge to inform occupational therapy practices (Njelesani et al, 2021) through collaborations with communities (Njelesani et al, 2012) and prioritizing the perspectives of people from historically underrepresented groups (Njelesani et al, 2022). I look ahead to the continued growth of the Occupational Science Section and am excited about the new work and novel ideas that scholars bring forward in 2023 and beyond.…”