Depression, Anxiety of Death, and Fear of Death in Family Caregivers of People With Prader-Willi Syndrome: A Mixed Study.

Global advances in integrative medicine and health Pub Date : 2025-04-27 eCollection Date: 2025-01-01 DOI:10.1177/27536130251319793
Monserrat Abigail Mora-Lagunes Recinos, María Luisa Escamilla Gutiérrez, Luis Israel Ledesma Amaya, Itzel Moreno Vite, Rebeca María Elena Guzmán Saldaña, Claudia Rubio Moreno
{"title":"Depression, Anxiety of Death, and Fear of Death in Family Caregivers of People With Prader-Willi Syndrome: A Mixed Study.","authors":"Monserrat Abigail Mora-Lagunes Recinos, María Luisa Escamilla Gutiérrez, Luis Israel Ledesma Amaya, Itzel Moreno Vite, Rebeca María Elena Guzmán Saldaña, Claudia Rubio Moreno","doi":"10.1177/27536130251319793","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Family caregivers of individuals with Prader-Willi syndrome face significant challenges that affect their social, economic, personal, and emotional well-being. The mental health of these caregivers remains largely unexplored, particularly regarding their own premature death.</p><p><strong>Objective: </strong>This study seeks to explicate how caregivers manage their responsibility of providing continuous specialized care for individuals with Prader-Willi syndrome. A mixed research approach was used to uncover depression, death anxiety, and anticipated fear of own death among caregivers of patients with SPW who access a foundation in the state of Hidalgo, Mexico.</p><p><strong>Method: </strong>A mixed-methods approach was employed, using a sequential explanatory design. The quantitative sample included 15 volunteer participants between 35 and 66 years old, belonging to a foundation in Hidalgo, Mexico. Research instruments had an internal consistency of r = >0.70. Qualitative data was gathered through a focus group, using interpretive description to explore caregivers' emotional experiences.</p><p><strong>Results: </strong>Statistical analyses, including Gamma and Kendall Tau tests, revealed significant correlations (<i>P</i> = 0.01) between caregivers' anticipated fear of death and the levels of death anxiety and depression. The qualitative findings yielded 3 principal themes: uncertainty about future self-sufficiency, fear of the future if they pass away, and the crucial role of community support.</p><p><strong>Discussion and conclusion: </strong>This methodological mixed study reveals a correlation between anxiety about the future, fear of death, and the emotional need for support. Continual emotional support and counselling are crucial for caregivers responsible for PWS patients' care.</p>","PeriodicalId":73159,"journal":{"name":"Global advances in integrative medicine and health","volume":"14 ","pages":"27536130251319793"},"PeriodicalIF":0.0000,"publicationDate":"2025-04-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12035207/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Global advances in integrative medicine and health","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/27536130251319793","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/1 0:00:00","PubModel":"eCollection","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0

Abstract

Background: Family caregivers of individuals with Prader-Willi syndrome face significant challenges that affect their social, economic, personal, and emotional well-being. The mental health of these caregivers remains largely unexplored, particularly regarding their own premature death.

Objective: This study seeks to explicate how caregivers manage their responsibility of providing continuous specialized care for individuals with Prader-Willi syndrome. A mixed research approach was used to uncover depression, death anxiety, and anticipated fear of own death among caregivers of patients with SPW who access a foundation in the state of Hidalgo, Mexico.

Method: A mixed-methods approach was employed, using a sequential explanatory design. The quantitative sample included 15 volunteer participants between 35 and 66 years old, belonging to a foundation in Hidalgo, Mexico. Research instruments had an internal consistency of r = >0.70. Qualitative data was gathered through a focus group, using interpretive description to explore caregivers' emotional experiences.

Results: Statistical analyses, including Gamma and Kendall Tau tests, revealed significant correlations (P = 0.01) between caregivers' anticipated fear of death and the levels of death anxiety and depression. The qualitative findings yielded 3 principal themes: uncertainty about future self-sufficiency, fear of the future if they pass away, and the crucial role of community support.

Discussion and conclusion: This methodological mixed study reveals a correlation between anxiety about the future, fear of death, and the emotional need for support. Continual emotional support and counselling are crucial for caregivers responsible for PWS patients' care.

普瑞德-威利综合征患者家庭照顾者的抑郁、死亡焦虑和死亡恐惧:一项混合研究
背景:普瑞德-威利综合征患者的家庭照顾者面临着影响其社会、经济、个人和情感健康的重大挑战。这些护理人员的心理健康状况在很大程度上仍未得到研究,特别是他们自己的过早死亡。目的:本研究旨在阐明护理人员如何管理他们的责任,为患有普瑞德-威利综合征的个体提供持续的专业护理。在墨西哥伊达尔戈州的一个基金会中,一项混合研究方法被用来揭示SPW患者护理人员的抑郁、死亡焦虑和对自己死亡的预期恐惧。方法:采用顺序解释设计,采用混合方法。定量样本包括15名年龄在35岁到66岁之间的志愿者,他们属于墨西哥伊达尔戈的一个基金会。研究仪器的内部一致性为r = >.70。通过焦点小组收集定性数据,使用解释性描述来探索照顾者的情感体验。结果:Gamma和Kendall Tau检验的统计分析显示,护理者对死亡的预期恐惧与死亡焦虑和抑郁水平之间存在显著相关性(P = 0.01)。定性研究结果产生了三个主要主题:对未来自给自足的不确定性,对他们去世后未来的恐惧,以及社区支持的关键作用。讨论与结论:这项方法混合研究揭示了对未来的焦虑、对死亡的恐惧和对支持的情感需求之间的相关性。持续的情感支持和咨询对于负责PWS患者护理的护理人员至关重要。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
CiteScore
4.00
自引率
0.00%
发文量
0
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:604180095
Book学术官方微信