Authors' objectives: There is a lack of interventions for specific phobia in children and adolescents with moderate to severe intellectual disabilities. 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. Many children with learning disabilities have significant fears or phobias. These can, for example, include a severe fear of dogs or other animals, visiting the dentist, or having an injection. Children and adolescents with learning disabilities are at least twice as likely to experience specific phobia than their typically developing peers. There is good evidence that psychological therapies, particularly exposure-based therapies, are an effective treatment for phobias, but these treatments have not been evaluated for use with people with learning disabilities, in particular for children and adolescents with moderate to severe learning disabilities. Due to difficulties with verbal communication, understanding, restricted and repetitive behaviours, and challenging behaviour, these treatments need to be adapted before they can be used. The aim of this study was to, using coproduction with our patient and public involvement (PPI) partners, develop and evaluate the feasibility of an exposure-based intervention for specific phobia in children and adolescents with moderate to severe learning disabilities. This work was undertaken in two phases: (1a) development of the intervention and (1b) description of treatment as usual (TAU); and (2) evaluation of the feasibility of the proposed intervention. Phase 1a: development The objectives were to: establish an Intervention Development Group (IDG), and using coproduction over a series of meetings, develop an intervention for specific phobia for use with children and adolescents who have moderate to severe learning disabilities with and without autism develop a treatment fidelity checklist to be used alongside the intervention manual appraise and consider several candidate outcome measures of anxiety-related symptoms, and secondary outcomes, and make a recommendation for use within phase 2.

Authors' results and conclusions: 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. The SPIRIT intervention and associated study processes were judged to be feasible and acceptable. The intervention requires minor revisions. Phase 1a We successfully adapted the intervention, developed a logic model and intervention fidelity checklist and selected outcome measures collaboratively with the IDG. The SPIRIT intervention was judged to be feasible to deliver and acceptable to parents of children and adolescents with moderate to severe intellectual disabilities and therapists. Carers and therapists made some helpful suggestions for revisions which can be easily incorporated into the existing manualised intervention with minor revisions. This study took place during the COVID-19 pandemic, and the recruitment of sites and participants during phase 2 was at a lower rate than anticipated. The study aimed to recruit up to 20 participants and recruited 15. The participant attrition rate was low and not attributable to the intervention or study processes. This study benefited from genuine PPI during the adaptation of the intervention, development of the fidelity checklist and logic model, choice of outcome measures and study management. Following minor revisions to the intervention, the SPIRIT intervention should be tested in a randomised trial.

Authors' methods: 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. 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. Children aged 5–15 years with moderate to severe learning disability and specific phobia, and their parents/carers. The SPIRIT intervention comprised two half-day workshops and eight support sessions plus treatment as usual. Randomisation was not modelled within this feasibility study, although the majority of parents and therapists indicated that this would be acceptable. Study design Phase 1a (intervention development): an IDG was established. Informed by co-applicant Williams’s existing intervention developed for dog phobia in adolescents with severe learning disabilities and little to no speech, we developed an intervention that aimed to be developmentally appropriate for use with both children and adolescents with moderate to severe learning disabilities, and with phobia related to any specific stimulus, as defined by the DSM-5 [American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM-5). 5th edn. Washington, DC: American Psychiatric Association; 2013] (animal, natural environment, blood-injection-injury, situational, other). Phase 1b (TAU survey): to determine current community-based TAU, an online survey (UK-wide) was conducted of parents/carers who identified their child (aged 5–15 years) with moderate to severe learning disabilities as having a specific phobia, together with interviews/online survey of professionals. Phase 2 (feasibility study): this study was a single-arm, non-randomised feasibility study, with participants receiving the intervention developed in phase 1a, in conjunction with any other treatment they were receiving. Overall, the study ran from January 2021 to June 2023. Phase 1a (intervention development) The IDG recruited six key stakeholders who were representatives from our PPI partners, carers and family members and clinicians. The Principal Investigator, Study Manager and Research Assistant attended all of the IDG meetings. Other members of the research team attended the IDG sessions as observers only.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hta/HTA NIHR130177

Year Published: 2024

URL for published report: https://www.journalslibrary.nihr.ac.uk/hta/LRWD7852

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/LRWD7852

Organisation Name: NIHR Health Technology Assessment programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk