重度智力和多重残疾患者预期寿命增加：对父母有什么影响？

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-02-11 DOI:10.1111/jar.70018

Karine Baumstarck, Sibylle Del Duca, Houria El Ouazzani, Ilyes Hamouda, Any Beltran Anzola, Marie-Anastasie Aim, Marie-Christine Rousseau

{"title":"重度智力和多重残疾患者预期寿命增加：对父母有什么影响？","authors":"Karine Baumstarck, Sibylle Del Duca, Houria El Ouazzani, Ilyes Hamouda, Any Beltran Anzola, Marie-Anastasie Aim, Marie-Christine Rousseau","doi":"10.1111/jar.70018","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger parents.</p>\n </section>\n \n <section>\n \n <h3> Method</h3>\n \n <p>The participants were parents of people included in the French EVAL-PLH cohort. Psychological status, quality of life and coping were compared between (i) parents of the youngest persons (< 20 years) versus parents of the oldest persons (≥ 35 years); (ii) youngest (< 45 years) versus oldest parents (≥ 55 years).</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>Compared with the youngest parents, the oldest parents did not differ in anxiety–mood disorders, quality of life or coping strategies used.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>We did not confirm that ageing generates psychological changes for parents. Future qualitative studies should deeply examine this underexplored issue.</p>\n \n <p><b>Trial Registration:</b> Clinical trial number: NCT02400528</p>\n </section>\n </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1000,"publicationDate":"2025-02-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70018","citationCount":"0","resultStr":"{\"title\":\"Increased Life Expectancy of People With Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?\",\"authors\":\"Karine Baumstarck, Sibylle Del Duca, Houria El Ouazzani, Ilyes Hamouda, Any Beltran Anzola, Marie-Anastasie Aim, Marie-Christine Rousseau\",\"doi\":\"10.1111/jar.70018\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Background</h3>\\n \\n <p>Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger parents.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Method</h3>\\n \\n <p>The participants were parents of people included in the French EVAL-PLH cohort. Psychological status, quality of life and coping were compared between (i) parents of the youngest persons (< 20 years) versus parents of the oldest persons (≥ 35 years); (ii) youngest (< 45 years) versus oldest parents (≥ 55 years).</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>Compared with the youngest parents, the oldest parents did not differ in anxiety–mood disorders, quality of life or coping strategies used.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusion</h3>\\n \\n <p>We did not confirm that ageing generates psychological changes for parents. Future qualitative studies should deeply examine this underexplored issue.</p>\\n \\n <p><b>Trial Registration:</b> Clinical trial number: NCT02400528</p>\\n </section>\\n </div>\",\"PeriodicalId\":51403,\"journal\":{\"name\":\"Journal of Applied Research in Intellectual Disabilities\",\"volume\":\"38 1\",\"pages\":\"\"},\"PeriodicalIF\":2.1000,\"publicationDate\":\"2025-02-11\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70018\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Applied Research in Intellectual Disabilities\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/jar.70018\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"PSYCHOLOGY, EDUCATIONAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Applied Research in Intellectual Disabilities","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/jar.70018","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PSYCHOLOGY, EDUCATIONAL","Score":null,"Total":0}

引用次数: 0

摘要

医学的进步提高了患有严重智力残疾和多重残疾的人的预期寿命。假设是，随着父母年龄的增长，他们担心不再陪伴在孩子身边。本文探讨了老年父母的经历可能与年轻父母不同的程度。方法研究对象为法国EVAL-PLH队列患者的父母。比较(1)年龄最小者父母（≤20岁）与年龄最大者父母（≥35岁）的心理状态、生活质量和应对能力；（ii）最年轻（45岁）与最年长父母（≥55岁）。结果与年龄最小的父母相比，年龄最大的父母在焦虑情绪障碍、生活质量或使用的应对策略方面没有差异。结论我们没有证实年龄的增长会导致父母的心理变化。未来的定性研究应该深入研究这个未被充分探讨的问题。试验注册：临床试验号：NCT02400528

本文章由计算机程序翻译，如有差异，请以英文原文为准。

查看原文本刊更多论文

Increased Life Expectancy of People With Profound Intellectual and Multiple Disabilities: What Does It Change for Parents?

Background

Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger parents.

Method

The participants were parents of people included in the French EVAL-PLH cohort. Psychological status, quality of life and coping were compared between (i) parents of the youngest persons (< 20 years) versus parents of the oldest persons (≥ 35 years); (ii) youngest (< 45 years) versus oldest parents (≥ 55 years).

Results

Compared with the youngest parents, the oldest parents did not differ in anxiety–mood disorders, quality of life or coping strategies used.

Conclusion

We did not confirm that ageing generates psychological changes for parents. Future qualitative studies should deeply examine this underexplored issue.

Trial Registration: Clinical trial number: NCT02400528

求助全文

通过发布文献求助，成功后即可免费获取论文全文。去求助

来源期刊

Journal of Applied Research in Intellectual Disabilities Multiple-

CiteScore

4.70

自引率

12.50%

发文量

期刊介绍： JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.