In this seminar, Professor Kylie Gray presented the findings of the study titled “Specific phobia in children with learning disabilities (SPIRIT)”. Professor Kylie Gray is the Director of Research and Director of Postgraduate Research at the Centre for Research in Intellectual and Developmental Disabilities, University of Warwick. She has over 25 years of research and clinical experience in intellectual and developmental disability autism assessment, diagnosis, and the development and evaluation of interventions and supports.

The SPIRIT study involved the development and testing of an intervention to treat specific phobia in children and adolescents with moderate-severe intellectual disability, funded by the National Institute for Health and Care Research (NIHR).

Why is an intervention for specific phobia in children and adolescents with moderate – severe intellectual disability needed?

Professor Gray started the seminar by highlighting the lack of research focus on the treatment of mental health in children and adolescents with intellectual disabilities/learning disabilities. Evidence surrounding the treatment of specific phobia suggests that exposure therapy is most appropriate. Existing exposure-based interventions may be suitable for adaptation for children and adolescents with borderline to mild intellectual disability but there is a need for an intervention specifically for children and adolescents with moderate-severe intellectual disability.

Professor Gray explained that the SPIRIT study was divided into three phases.

Phase 1a- Intervention review group

In the first phase, an intervention review group was created, composed of two parents, six clinicians working in the area of intellectual disability and members of the research team. The group reviewed material from a previously developed exposure-based intervention for children with severe learning disabilities and limited communication skills. This group worked collaboratively to review and revise this intervention. This group developed the treatment manual, parent workbook, a treatment fidelity checklist (to check if clinicians delivered the intervention as intended), a practitioner training programme, and decided on suitable outcome measures.

Phase 1b- National survey of parents and interviews with health practitioners

The second phase of this study involved conducting a national (UK) survey of parents and interviews with health practitioners to gain an understanding of the current treatment as usual for specific phobias in children and adolescents with moderate-severe intellectual disability.

Of 41 parents, 73.2% indicated that they were not offered any support or treatment for their child’s specific phobia. Where families were offered support, this tended to be medication (50%). Of 22 health practitioners, 45.5% indicated that their service did not offer treatment or intervention for specific phobia. Professor Gray argued that these findings further highlight the need for an intervention for this population.

Phase 2- Feasibility study

(To see if the intervention could be successfully delivered and was acceptable to parents and professionals)
The final phase of the study was to implement the intervention that was developed in the first phase of the study. Professor Gray emphasised that this phase aimed to see if was possible to conduct this intervention in this context and if parents and professionals found it acceptable rather than seeing if the intervention was effective.

This intervention was parent-mediated, meaning that parents were taught to deliver the intervention to their child. Parents participated in two half-day workshops and a series of support workshops with clinicians remotely. Professor Gray listed the core elements of the programme which included:

• Learning about specific phobia and how behaviour can be changed
• Graded exposure: gradually exposing the child to their fear
  Relaxation e.g. breathing exercises.
• Reinforcement: a consequence which follows a behaviour and increases the likelihood the behaviour will occur again in the future.
• Visual schedules: a sequence of pictures to help their child’s understanding.
• Exposure plan: creating a plan of exposure steps for their child.

A total of five NHS sites took part in this phase of the study, with 15 families enrolled and 12 completing the outcome measures. Professor Gray highlighted the importance of the outcome measures having very little missing data which suggests that parents were able to complete these and found them to be acceptable. Professor Gray argued that conclusions cannot be drawn from the outcome measures but it is promising that results appear to be going in the expected direction.

Interviews were held with five parents/carers and five therapists who participated in the invention. The majority of parents reported that they had learned new skills to help their child and felt their child made progress. All parents described the experience as positive but two parents highlighted that although their child had made progress they had not met their goal yet. Professor Gray proposed that this was unsurprising due to the short nature of the intervention and that families would be expected to continue with the strategies after completing the intervention to reach their goals. Suggested improvements from parents included more sessions and increased flexibility of session delivery.

In terms of therapists, the majority suggested that the training was clear and that support sessions were helpful for participants. Most therapists reported that they would have preferred a face-to-face delivery but also recognised that online was more appropriate/acceptable for parents.

Challenges

Professor Gray highlighted the negative impact of the COVID-19 pandemic on this study, causing delays and issues in recruitment. This also resulted in changing the intervention to an online delivery. Another issue that was experienced was clinicians having difficulty identifying specific phobias, especially among autistic children with sensory issues. Going forward, Professor Gray suggested that more education around this would be required.

Conclusions

SPIRIT seems to be helpful and acceptable to parents and therapists with overwhelmingly positive feedback. Parents and professionals raised some potential revisions including more flexibility of support sessions and some minor revisions to the materials. It is hoped that more research can be conducted with SPIRIT to see if this intervention is effective in improving outcomes for families of children and adolescents with moderate-serve intellectual disability and specific phobia.

Professor Gray’s seminar highlighted the need for additional research into the area of mental health support for children and adolescents with moderate-serve intellectual disability. The SPIRIT study offers exciting potential for the development of a programme for children and adolescents with moderate-serve intellectual disability and specific phobia.

Emma Scripps is an ESRC funded PhD student at the Centre for Research in Intellectual and Developmental Disabilities (CIDD), University of Warwick.

Read more about our work with the University of Warwick here.