‘Bridging the gap’: exploring shared decision-making with autistic young people within an NHS Learning Disability and Autism Keyworker Programme in England

Abstract

Background: while each young person has the right to participate in shared decision-making about their care and support, autistic young people often report poor experiences of mental health services and are frequently excluded from, or misunderstood within, care planning conversations. Given that shared decision-making requires practitioners and service users to discuss options together, the differences in communication profiles across autistic and non-autistic populations raises questions as to how mutual understanding can be maximised within care planning conversations. This study sought to explore how shared decision-making took place with autistic young people within a specialist NHS autism community mental health service in England, and to elucidate the features of practice that enabled the effective participation of autistic young people in decision-making discussions.

Methods: a qualitative case study was undertaken within an NHS Autism and Learning Disability Keyworker Programme in England involving 13 participants (4 autistic young people, 3 parent/carers, and 6 service keyworkers). Data were collected through regular service observations, interviews and focus groups across six months.

Results: four themes were generated to explain how shared decision-making was enacted within and across the service: 1) navigating organisational tensions, 2) bridging different communication styles, 3) enabling autistic thinking patterns and 4) creating conditions for reciprocity and dialogue. Eight subcategories were developed to illustrate distinctive features of practice which enabled autistic young people’s participation in decision-making conversations.

Conclusion: the findings demonstrate that specialist keyworkers were central to facilitating shared decision-making with autistic young people. Their strong understanding of autism enabled them to bridge communication differences across multiple stakeholders and by adapting communication approaches to suit an autistic profile, their practice encouraged meaningful dialogue. The study offers depth and clarity on strategies used by the keyworkers to enable shared decision-making conversations to take place effectively with autistic young people and has wider applicability across healthcare services.

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Identifiers

ORCID for Sarah Parsons: orcid.org/0000-0002-2542-4745

ORCID for Hanna Kovshoff: orcid.org/0000-0001-6041-0376

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