Integrating Community Participation With Interpretative Phenomenological Analysis
Reflections on Engaging the Autism Community
Bibliographic Data
| ID | 2411141 |
|---|---|
| Authors | Gabrielle A Heselton (0000-0003-0262-7782), Gwen R Rempel (0000-0002-0416-5967), David B Nicholas, David Nicholas (0000-0003-4480-322X) |
| Year | 2021 |
| Volume | 20 |
| Publication date | 2021-01-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | International Journal of Qualitative Methods (JOURNAL) |
| Journal identifiers | ISSN: 1609-4069 • E-ISSN: 1609-4069 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/16094069211055575 |
| OpenAlex | W3155211237 |
| Language | EN |
| Citations received | 2 |
| References cited | 12 |
Members of the autistic community have long advocated for more input into and participation with autism-related research. Currently, the power to determine the direction of autism-related research and knowledge production related to autism lies with non-autistic researchers, while the wishes and perspectives of the autistic community are largely ignored. There is a growing trend toward ethical autism-related research, however, in which the perspectives of all stakeholders, particularly those of autistic individuals, are sought and their expertise on autism is foregrounded. In a study exploring the experiences of childhood adversity and resilience among autistic adults, we strove to conduct our research in an inclusive and ethical way, by integrating participatory methods, such as community engagement to inform research design, and credibility checking with participants to confirm that the analysis resonated with their experiences. Five stakeholders, representing parents of children on the autism spectrum, professionals, and autistic community members were recruited to provide input into the research design and provide insight into autistic ways of communicating, interacting, and being. The recommendations generated through this community engagement were then integrated into an interpretative phenomenological analysis (IPA) framework and implemented with four adult autistic participants. Through reflection on the process of community engagement, development of research design, implementation of the study, and credibility checking, it is clear that incorporating participatory methods into IPA increases rigor and ensures that autistic perspectives are represented through research
Autism · Citizen journalism · Credibility · Developmental psychology · Interpretative phenomenological analysis · Participatory action research · Political science · Psychological resilience · Qualitative research · Social science · Sociology · Autism Spectrum Disorder Research · Down syndrome and intellectual disability research · Family and Disability Support Research · Psychology · Social Psychology
| Citations per year | 2 |
|---|---|
| Citation span | 2025 - 2026 (2) |
| Highly cited | No |