Background <p>The autistic and autism communities have identified improving the quality of life and well-being of autistic people as a key priority. Despite this, to date, there are no evidence-based supports for autistic children which specifically focus on improvements in these areas. This project seeks to address this gap by evaluating the acceptability and feasibility of <i>Bloom</i>, an 8-week co-produced and co-facilitated parent group that aims to enhance the quality of life and well-being of young autistic children.</p> Methods <p>This is a feasibility and acceptability study of a parent group, <i>Bloom</i>, which has been co-designed and co-produced between researchers and representatives from community organisations. The study aims to recruit 80 parents of autistic children aged 3–8&#xa0;years through community organisations and social media networks. Once informed consent is provided, participants will be asked to complete baseline assessments (questionnaires and semi-structured interviews). These include measures of demographic as well as child, family, and parent well-being. Participants will be invited to attend the <i>Bloom</i> group for eight consecutive weeks during school term times. Groups will either be online or face to face, depending on parent preference and availability. Each group will be co-facilitated between an autistic person and an allied health professional. The assessments conducted at baseline (T1) will be repeated after completion of the group (T2) and at follow-up, 3&#xa0;months after group completion (T3). At T2 and T3, participants will also be asked about their experiences of both the group and of their participation in the study.</p> Discussion <p>This feasibility and acceptability trial will provide essential data that, if positive, will inform the design of a fully powered randomised controlled trial (RCT). This includes the acceptability and feasibility of recruitment, study processes, the Bloom parent group, and baseline/outcome measures, including adherence to processes and the group. Additional data will be collected on retention from baseline to follow-up; effect sizes will be calculated for each outcome measure, both of which will inform the sample size of a future RCT. Findings of this study will be disseminated through written and/or audiovisual lay summaries to all participants and partner community organisations, as well as through peer-reviewed manuscripts and conference presentations.</p> Conclusions <p>This study is one small, but important, step towards autism-specific, relevant, and accessible supports that combine professional and lived experience to improve outcomes for autistic people and their families.</p> Trial registration <p>Ethical clearance was provided by Griffith University Human Research Ethics Committee (HREC 2023/934). The Universal Trial Number is U1111-1305-0305, and the study has been registered with the Australian New Zealand Clinical Trials Registry (ANZCTR) number ACTRN12624000350527.</p>

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Protocol for a feasibility and acceptability trial of Bloom, a co-produced and co-facilitated parent group to enhance the quality of life and well-being of young autistic children

  • Dawn Adams,
  • Kathryn Ambrose,
  • Rachael Bowen,
  • Melanie Heyworth,
  • Helen Heussler,
  • Janneke Roth,
  • Elizabeth Pellicano,
  • Martin Downes,
  • Jac den Houting,
  • Jessica Paynter,
  • Kate Simpson,
  • David Trembath,
  • Marleen Westerveld,
  • Annette Carroll,
  • Alexandra Johnston

摘要

Background

The autistic and autism communities have identified improving the quality of life and well-being of autistic people as a key priority. Despite this, to date, there are no evidence-based supports for autistic children which specifically focus on improvements in these areas. This project seeks to address this gap by evaluating the acceptability and feasibility of Bloom, an 8-week co-produced and co-facilitated parent group that aims to enhance the quality of life and well-being of young autistic children.

Methods

This is a feasibility and acceptability study of a parent group, Bloom, which has been co-designed and co-produced between researchers and representatives from community organisations. The study aims to recruit 80 parents of autistic children aged 3–8 years through community organisations and social media networks. Once informed consent is provided, participants will be asked to complete baseline assessments (questionnaires and semi-structured interviews). These include measures of demographic as well as child, family, and parent well-being. Participants will be invited to attend the Bloom group for eight consecutive weeks during school term times. Groups will either be online or face to face, depending on parent preference and availability. Each group will be co-facilitated between an autistic person and an allied health professional. The assessments conducted at baseline (T1) will be repeated after completion of the group (T2) and at follow-up, 3 months after group completion (T3). At T2 and T3, participants will also be asked about their experiences of both the group and of their participation in the study.

Discussion

This feasibility and acceptability trial will provide essential data that, if positive, will inform the design of a fully powered randomised controlled trial (RCT). This includes the acceptability and feasibility of recruitment, study processes, the Bloom parent group, and baseline/outcome measures, including adherence to processes and the group. Additional data will be collected on retention from baseline to follow-up; effect sizes will be calculated for each outcome measure, both of which will inform the sample size of a future RCT. Findings of this study will be disseminated through written and/or audiovisual lay summaries to all participants and partner community organisations, as well as through peer-reviewed manuscripts and conference presentations.

Conclusions

This study is one small, but important, step towards autism-specific, relevant, and accessible supports that combine professional and lived experience to improve outcomes for autistic people and their families.

Trial registration

Ethical clearance was provided by Griffith University Human Research Ethics Committee (HREC 2023/934). The Universal Trial Number is U1111-1305-0305, and the study has been registered with the Australian New Zealand Clinical Trials Registry (ANZCTR) number ACTRN12624000350527.