Community-Based Participatory Design for Research that Impacts the Lives of Transgender and/or Gender-Diverse Autistic and/or Neurodiverse People.


Journal

Clinical practice in pediatric psychology
ISSN: 2169-4826
Titre abrégé: Clin Pract Pediatr Psychol
Pays: United States
ID NLM: 101607240

Informations de publication

Date de publication:
Dec 2019
Historique:
entrez: 26 3 2021
pubmed: 1 12 2019
medline: 1 12 2019
Statut: ppublish

Résumé

Research addressing the co-occurrence of autism (and/or neurodiversity) and gender-diversity (A/ND-GD) has been conducted largely without the perspectives and voices of the A/ND-GD community. Including A/ND-GD community advocates as research partners may be a critical next step for advancing research initiatives on the co-occurrence given the apparent complexity and alterity of the A/ND-GD experience. Consistent with the community-based participatory research (CBPR) model we propose herein, our authorship team includes a partnership between clinician researchers and diverse A/ND-GD community collaborators. Multiple facets of the A/ND-GD lived experience are examined, including through narratives provided by our A/ND-GD community partners. Based on our experience conducting A/ND-GD-related research and our lived experience as A/ND-GD self-advocates, we highlight challenges in this line of research, including risks of conducting studies without the involvement of the A/ND-GD community. And given that many A/ND-GD youth present with gender-related urgency during the teen years, we provide a developmental framework for how CBPR-informed methods may enrich our understanding of the care needs of these young people and provide context for the apparent heterogeneity in their gender needs and trajectories over time. Integrating CBPR methodologies in A/ND-GD research initiatives has the potential to optimize the relevance of the research questions asked and the interpretation and contextualization of study findings.

Identifiants

pubmed: 33767942
doi: 10.1037/cpp0000310
pmc: PMC7989799
mid: NIHMS1058198
doi:

Types de publication

Journal Article

Langues

eng

Pagination

396-404

Subventions

Organisme : NCATS NIH HHS
ID : KL2 TR001877
Pays : United States

Déclaration de conflit d'intérêts

Conflicts of Interest: The authors declare that they have no conflicts of interest.

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Auteurs

John F Strang (JF)

Gender and Autism Program, Center for Autism Spectrum Disorders, Children's National Medical Center, Washington, DC USA.
George Washington University School of Medicine, George Washington University, Washington, DC USA.

Sascha E Klomp (SE)

Nieuwegein, Utrecht, the Netherlands.

Reid Caplan (R)

Autistic Self Advocacy Network (ASAN), Washington, DC USA.

April D Griffin (AD)

Arborfield, Saskatchewan, Canada.

Laura G Anthony (LG)

Pediatric Mental Health Institute, Children's Hospital of Colorado, Aurora, CO USA.
Department of Psychiatry, University of Colorado School of Medicine, Aurora, CO USA.

Marvel C Harris (MC)

Zutphen, Gelderland, the Netherlands.

Elizabeth K Graham (EK)

The Arc of Prince George's County, Largo, MD USA.
The Arc of the United States National Council of Self-Advocates, Washington DC USA.

Megan Knauss (M)

Gender and Autism Program, Center for Autism Spectrum Disorders, Children's National Medical Center, Washington, DC USA.
Alliance of Community Health Plans, Washington, DC USA.

Anna I R van der Miesen (AIR)

Department of Child and Adolescent Psychiatry, Center of Expertise in Gender Dysphoria, Amsterdam UMC, VU University Medical Center, Amsterdam, the Netherlands.

Classifications MeSH