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For autistic persons by autistic persons: Acceptability of a structured peer support service according to key stakeholders.

Health expectations : an international journal of public participation in health care and health policy2023

Valderrama Alena, Martinez Alejandra, Charlebois Kathleen, Guerrero Lucila, Forgeot d'Arc Baudouin

What this study means for families

This study looked at what people think about support groups run by autistic people for other autistic people. The researchers talked to autistic adults, parents, and service providers. Autistic people and parents liked the idea, but some service providers weren't sure autistic people could help others. The study found that these programs work best when peer supporters get proper training and when meetings happen without service providers present.

Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.

Research summary

This qualitative study examined stakeholder perspectives on structured peer support programs for autistic people, led by autistic individuals. Researchers interviewed 15 key stakeholders including 6 autistic adults, 4 caregivers, and 5 service providers. Results showed that autistic people and caregivers found peer support programs acceptable, but service providers expressed doubts about autistic people's ability to provide support. Key facilitators identified included proper training for peer helpers, structured discussion frameworks, support for autistic leadership, and environments accommodating communication and sensory needs.

Importantly, spaces without service providers were deemed essential for program acceptability, highlighting the need to address professional prejudice regarding autistic capabilities.

Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.

Key findings

  • 1

    Autistic people and caregivers found structured peer support programs acceptable

    Confidence: moderateRelevance: Supports development of peer-led support services for autistic individuals
  • 2

    Service providers expressed doubts about autistic people's ability to offer peer support

    Confidence: moderateRelevance: Highlights need for professional education to reduce prejudice and support implementation
  • 3

    Key facilitators include training for peer helpers, structured frameworks, and spaces without service providers

    Confidence: moderateRelevance: Provides implementation guidance for developing effective peer support programs

Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.

Clinical implications

Findings suggest peer support programs could address unmet support needs for autistic people. Implementation requires addressing service provider prejudice through education, ensuring proper peer training, and creating appropriate environments. Programs should be designed with autistic leadership and accommodate communication/sensory needs.

Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.

Limitations

Small sample size of 15 participants limits generalizability. Qualitative design examining anticipated acceptability rather than actual program outcomes. No long-term follow-up or effectiveness data provided.

Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.

Original abstract

Social support is a protective factor in the mental health of autistic people. Furthermore, prejudice regarding autistic people is a constraint for the development of social support programmes by autistic peers. The objective of this study is to describe the anticipated acceptability of structured peer support programmes for and by autistic persons. Fifteen key stakeholders (six autistic adults, four caregivers and five service providers) participated in in-depth semistructured interviews.

A qualitative thematic analysis of the content of the verbatim was carried out. We found that while a structured peer social support programme is acceptable to autistic people and caregivers, there was no consensus among service providers. The latter expressed doubts about the ability of autistic people to offer support. The framing of discussions between peers, the training of peer helpers, the support for autistic leadership and an organization that considers the communicational and sensory characteristics of autistic persons, could influence adherence to such a programme.

Moreover, a space without service providers is an important condition for the acceptability of a peer support programme. A structured peer support service for and by autistic persons could be an innovative way to answer the unmet support needs of autistic people. It seems essential to anticipate potential barriers and facilitators and to communicate among health professionals to promote this approach and reduce possible prejudice about the ability of autistic people to offer support to their peers. More studies are necessary.

Fifteen key stakeholders who are involved in autistic people's trajectory of service and support participated in this research. We are a research team composed of healthcare professionals and researchers, in addition to one member of our team being an autistic advocate and a mental health peer-support mentor. Two members of our team are also parents of autistic children. The comprehensibility of the questions for the interview was consulted and discussed with one autistic advocate-collaborator.

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Evidence Grade

Emerging

limited

Grade assigned by AutismInsights based on study type and published abstract.

Study Details

Journal
Health expectations : an international journal of public participation in health care and health policy
Year
2023
PMID
36447392
DOI
10.1111/hex.13680

MeSH Terms

AdultChildHumansAutistic DisorderCounselingMental Health ServicesMental HealthHealth Personnel