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. 2024 Oct;28(64):1–118. doi: 10.3310/LRWD7852

Specific phobias in children with moderate to severe intellectual disabilities: SPIRIT, an adaptation and feasibility study.

Kylie M Gray, Magdalena M Apanasionok, Emma Scripps, Karen Bunning, Christine Burke, Malwina Filipczuk, Richard P Hastings, Ashley Liew, Rachel McNamara, Atiyya Nisar, Rebecca Playle, Tim Williams, Peter E Langdon
PMCID: PMC11472212  PMID: 39368077

Abstract

BACKGROUND

There is a lack of interventions for specific phobia in children and adolescents with moderate to severe intellectual disabilities.

OBJECTIVES

The objectives were to: (a) develop an intervention for specific phobia, together with an intervention fidelity checklist and logic model, and evaluate candidate outcome measures, together with parents/carers and clinicians; (b) describe treatment as usual; (c) model the intervention to determine the acceptability and feasibility for all stakeholders, judge the appropriateness of outcome measures, explore recruitment pathways, and examine the feasibility and acceptability of consent and associated processes; and (d) describe factors that facilitate or challenge the intervention.

DESIGN

Phase 1a: using consensus methods, an Intervention Development Group was established who met to develop the intervention, review candidate outcome measures and contribute to the development of the intervention fidelity checklists and logic model. Phase 1b: a national online survey was conducted with parents and professionals to describe treatment as usual. Phase 2: a single-group non-randomised feasibility study was designed to model the intervention and to test intervention feasibility and acceptability, outcome measures and aspects of the research process.

SETTING

Phase 2: participants were recruited from National Health Service community child learning disabilities teams and special schools in England. Treatment was delivered in the child learning disabilities teams.

PARTICIPANTS

Children aged 5-15 years with moderate to severe learning disability and specific phobia, and their parents/carers.

INTERVENTIONS

The SPIRIT intervention comprised two half-day workshops and eight support sessions plus treatment as usual.

MAIN OUTCOMES

The feasibility and acceptability of the intervention and research processes, recruitment, outcome measure completion rates and acceptability, and intervention adherence. Parents completed all of the outcome measures, with very low rates of missing data. The recruitment of sites and participants was impacted by the COVID-19 pandemic.

RESULTS

The intervention was successfully developed and modelled with 15 participants with moderate to severe learning disabilities and their parents. The intervention was judged to be feasible and acceptable by parents/carers and therapists. Parents/carers and therapists suggested minor intervention revisions.

LIMITATIONS

Randomisation was not modelled within this feasibility study, although the majority of parents and therapists indicated that this would be acceptable.

CONCLUSIONS

The SPIRIT intervention and associated study processes were judged to be feasible and acceptable. The intervention requires minor revisions.

FUTURE WORK

The SPIRIT intervention should be tested further within a clinical trial.

STUDY REGISTRATION

Current Controlled Trials ISRCTN34766613.

FUNDING

This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: NIHR130177) and is published in full in Health Technology Assessment; Vol. 28, No. 64. See the NIHR Funding and Awards website for further award information.

Plain language summary

This study was about children and adolescents who have moderate to severe learning disabilities and specific phobia. This study had two parts. In the first part, we worked with parents of young people with learning disabilities and therapists to develop a treatment for specific phobia in children and adolescents with moderate to severe learning disabilities. We also collected information about what treatment young people were currently getting. To do this, we conducted a national (United Kingdom) survey of parents/carers who have a child with a learning disability and a phobia, along with a survey of health professionals who work with children with learning disabilities. Together with parents and therapists, we developed a treatment for specific phobia in children and adolescents with moderate to severe learning disabilities. We collected information about what treatments young people received for specific phobia and found that many do not receive any treatment for their specific phobia. In the second part, we wanted to find out whether the treatment was acceptable to parents and therapists. To do this, we tried out the treatment with 15 children and adolescents. We had difficulties getting people involved in the study due to the COVID-19 pandemic. We got enough people involved to help us to work out whether the treatment was acceptable to parents and therapists. We interviewed parents and therapists to find out how they felt about the treatment and being part of the study. We also talked to therapists to ask them what they thought about the treatment. Parents told us that they liked being involved in the study and found the treatment helped them to help their children. Parents and therapists suggested some changes to the treatment to help improve it in the future. It was recommended that a larger study should be completed.

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