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1.
J Appl Res Intellect Disabil ; 37(5): e13282, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39074852

RESUMO

BACKGROUND: The aim of this feasibility study was to adapt and model a behavioural intervention for anxiety with autistic adults with moderate to severe intellectual disabilities. METHOD: Twenty-eight autistic adults with moderate or severe intellectual disabilities, 37 carers, and 40 therapists took part in this single-group non-randomised feasibility study designed to test intervention feasibility and acceptability, outcome measures, and research processes. RESULTS: The intervention was judged as feasible and acceptable by autistic adults with intellectual disabilities, carers, and therapists. Minor intervention revisions were suggested. Carers completed 100% of outcome measures and the missing data rate was low. Complying with legislation governing the inclusion of participants who lack capacity to decide whether they wanted to take part in this study led to an average 5-week enrolment delay. CONCLUSION: The intervention and associated study processes were judged to be feasible and acceptable and should now be tested within a larger randomised trial.


Assuntos
Transtorno Autístico , Terapia Comportamental , Estudos de Viabilidade , Deficiência Intelectual , Humanos , Deficiência Intelectual/terapia , Adulto , Masculino , Feminino , Transtorno Autístico/terapia , Terapia Comportamental/métodos , Adulto Jovem , Pessoa de Meia-Idade , Ansiedade/terapia , Transtorno do Espectro Autista/terapia
2.
Health Technol Assess ; 28(64): 1-118, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39368077

RESUMO

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.


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.


Assuntos
Estudos de Viabilidade , Deficiência Intelectual , Transtornos Fóbicos , Humanos , Criança , Adolescente , Feminino , Masculino , Deficiência Intelectual/terapia , Transtornos Fóbicos/terapia , Inglaterra , Pré-Escolar , Pais/psicologia , COVID-19
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