Han, Kai Lin Emeline;
(2023)
Development and feasibility of a stigma-related support programme for autistic adults.
Doctoral thesis (Ph.D), UCL (University College London).
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Abstract
Background: Autistic people commonly experience public stigma, and some of them internalise this stigma with negative effects on their mental health. While interventions to reduce public stigma towards autistic people exist, there are currently no interventions that provide stigma-related support for autistic people. Aims: The aims of this thesis were to: (1) use a participatory approach to develop a stigma-related support programme for autistic adults; and (2) evaluate the feasibility, acceptability, and potential impact of this programme. Methods: Medical Research Council guidelines for developing and evaluating complex interventions were followed. The development phase involved a systematic review on autistic people’s experiences of stigma, a consultation survey to gather input from the autism community on stigma-related support, and the co-design of a support programme (together with two autistic adults) based on an existing intervention for another population. The feasibility phase involved a single arm, pre-post evaluation of the programme using mixed methods surveys. Feasibility was assessed by rates of recruitment, retention, and engagement. Acceptability was evaluated using quantitative data measuring levels of satisfaction with the programme and qualitative data on participants’ experiences of the programme. Potential impact was explored using four psychosocial outcome measures. Results: A disclosure decision-making programme was adapted for autistic adults in a self-guided format with optional peer support. Overall, recruitment and engagement rates were high, but retention was challenging. High satisfaction levels and positive qualitative feedback indicated that the programme was acceptable to autistic adults, while participants also provided useful recommendations for improvement. Findings also suggested that the programme had potential to improve decisional conflict, disclosure-related distress, stigma-related stress, and internalised stigma. Conclusion: The results suggest that the adapted programme may not suit all autistic people, but those who completed it found it helpful and beneficial. Further refinement and evaluation of the programme is warranted.
| Type: | Thesis (Doctoral) |
|---|---|
| Qualification: | Ph.D |
| Title: | Development and feasibility of a stigma-related support programme for autistic adults |
| Open access status: | An open access version is available from UCL Discovery |
| Language: | English |
| Additional information: | Copyright © The Author 2023. Original content in this thesis is licensed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licence (https://creativecommons.org/licenses/by-nc/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request. |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Psychology and Human Development |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10184153 |
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