Susie Turner, Charlotte Nash, Jane Goodwin, Johanna Smith, Charlie Fairhurst, Jill Cadwgan
{"title":"成年脑瘫患者的过渡和终身护理：一个难以影响的患者群体！我们还在把年轻人“推下悬崖”吗？","authors":"Susie Turner, Charlotte Nash, Jane Goodwin, Johanna Smith, Charlie Fairhurst, Jill Cadwgan","doi":"10.1111/jep.70011","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Objectives</h3>\n \n <p>At Evelina London Children's Hospital, tertiary care is provided for children with Cerebral Palsy (CP) across the South East of England. An increasing number of adults with CP remain under the care of the children's hospital due to a lack of appropriate adult neurodisability services. This quality improvement project as part of a gap analysis regarding transition pathways for young adults with CP, aimed to explore the lived experience of young adults within our service, with respect to transition and care in adulthood.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>This was a multi-methods design. Firstly, a bespoke questionnaire to young adults with CP and their families evaluated their experience of transition, access to services, challenges with care, and their needs from healthcare professionals (<i>n</i> = 46). Then, a focus group with parents of adults with CP (<i>n</i> = 4) and interviews with adults with CP (<i>n</i> = 5) informed design of an ideal transition pathway and adult service. The qualitative data were thematically analysed.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>Framework analysis of the questionnaire data was mapped against the International Classification of Functioning (ICF) with the following themes identified: Body structure and function: pain and anxiety; Activity: equality; accessibility and relationships; Participation: need for friendship and social opportunities, employment and education; Environmental factors: health services and providers; home environment and wider community; Personal factors: independence. Analysis of the focus group and interviews identified five main themes: Gradual and co-ordinated transition process; Co-ordination of care in adult services; Knowledge, skills and experience of professionals; Communication; and Worrying about the future.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>Participants identified significant challenges with transition pathways and adult care. Annual reviews from healthcare professionals with expertise in CP should be offered to young adults to ensure early identification of health needs. Further research is needed to support business planning in development of appropriate adult services for adults with CP and ensure successful transition pathways.</p>\n </section>\n </div>","PeriodicalId":15997,"journal":{"name":"Journal of evaluation in clinical practice","volume":"31 1","pages":""},"PeriodicalIF":2.1000,"publicationDate":"2025-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jep.70011","citationCount":"0","resultStr":"{\"title\":\"Transition and Life-Long Care for Adults With Cerebral Palsy: A Patient Group ‘Too Hard to Impact!’ Are We Still Sending Young People ‘Off a Cliff’?\",\"authors\":\"Susie Turner, Charlotte Nash, Jane Goodwin, Johanna Smith, Charlie Fairhurst, Jill Cadwgan\",\"doi\":\"10.1111/jep.70011\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Objectives</h3>\\n \\n <p>At Evelina London Children's Hospital, tertiary care is provided for children with Cerebral Palsy (CP) across the South East of England. An increasing number of adults with CP remain under the care of the children's hospital due to a lack of appropriate adult neurodisability services. This quality improvement project as part of a gap analysis regarding transition pathways for young adults with CP, aimed to explore the lived experience of young adults within our service, with respect to transition and care in adulthood.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>This was a multi-methods design. Firstly, a bespoke questionnaire to young adults with CP and their families evaluated their experience of transition, access to services, challenges with care, and their needs from healthcare professionals (<i>n</i> = 46). Then, a focus group with parents of adults with CP (<i>n</i> = 4) and interviews with adults with CP (<i>n</i> = 5) informed design of an ideal transition pathway and adult service. The qualitative data were thematically analysed.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>Framework analysis of the questionnaire data was mapped against the International Classification of Functioning (ICF) with the following themes identified: Body structure and function: pain and anxiety; Activity: equality; accessibility and relationships; Participation: need for friendship and social opportunities, employment and education; Environmental factors: health services and providers; home environment and wider community; Personal factors: independence. Analysis of the focus group and interviews identified five main themes: Gradual and co-ordinated transition process; Co-ordination of care in adult services; Knowledge, skills and experience of professionals; Communication; and Worrying about the future.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusions</h3>\\n \\n <p>Participants identified significant challenges with transition pathways and adult care. Annual reviews from healthcare professionals with expertise in CP should be offered to young adults to ensure early identification of health needs. 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Transition and Life-Long Care for Adults With Cerebral Palsy: A Patient Group ‘Too Hard to Impact!’ Are We Still Sending Young People ‘Off a Cliff’?
Objectives
At Evelina London Children's Hospital, tertiary care is provided for children with Cerebral Palsy (CP) across the South East of England. An increasing number of adults with CP remain under the care of the children's hospital due to a lack of appropriate adult neurodisability services. This quality improvement project as part of a gap analysis regarding transition pathways for young adults with CP, aimed to explore the lived experience of young adults within our service, with respect to transition and care in adulthood.
Methods
This was a multi-methods design. Firstly, a bespoke questionnaire to young adults with CP and their families evaluated their experience of transition, access to services, challenges with care, and their needs from healthcare professionals (n = 46). Then, a focus group with parents of adults with CP (n = 4) and interviews with adults with CP (n = 5) informed design of an ideal transition pathway and adult service. The qualitative data were thematically analysed.
Results
Framework analysis of the questionnaire data was mapped against the International Classification of Functioning (ICF) with the following themes identified: Body structure and function: pain and anxiety; Activity: equality; accessibility and relationships; Participation: need for friendship and social opportunities, employment and education; Environmental factors: health services and providers; home environment and wider community; Personal factors: independence. Analysis of the focus group and interviews identified five main themes: Gradual and co-ordinated transition process; Co-ordination of care in adult services; Knowledge, skills and experience of professionals; Communication; and Worrying about the future.
Conclusions
Participants identified significant challenges with transition pathways and adult care. Annual reviews from healthcare professionals with expertise in CP should be offered to young adults to ensure early identification of health needs. Further research is needed to support business planning in development of appropriate adult services for adults with CP and ensure successful transition pathways.
期刊介绍：
The Journal of Evaluation in Clinical Practice aims to promote the evaluation and development of clinical practice across medicine, nursing and the allied health professions. All aspects of health services research and public health policy analysis and debate are of interest to the Journal whether studied from a population-based or individual patient-centred perspective. Of particular interest to the Journal are submissions on all aspects of clinical effectiveness and efficiency including evidence-based medicine, clinical practice guidelines, clinical decision making, clinical services organisation, implementation and delivery, health economic evaluation, health process and outcome measurement and new or improved methods (conceptual and statistical) for systematic inquiry into clinical practice. Papers may take a classical quantitative or qualitative approach to investigation (or may utilise both techniques) or may take the form of learned essays, structured/systematic reviews and critiques.
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