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Decision-making processes among siblings caring for adults with intellectual or developmental disabilities.

机译:照顾有智力或发育障碍的成年人的兄弟姐妹之间的决策过程。

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摘要

Sibling caregivers comprise a population of increasing significance to intellectual/developmental disabilities (I/DD) policy and practice. As persons with I/DD and their caregiving parents age, more families are relying on adult siblings to provide care. Today, 70% of persons with I/DD live with family members; estimates indicate that up to 20% may reside with siblings. Sibling caregiving has potential to meet some of the growing social need for later life care of individuals with I/DD. However, the needs of siblings providing care are often not addressed by the service system. Inadequate knowledge about how siblings come to be caregivers and their caregiving needs hinders efforts to assist siblings who are providing care or considering whether to assume care.;This study sought to discover factors associated with successful sibling caregiving outcomes and to investigate sibling caregivers' needs for information, services, and decision-making assistance. The initial decision to assume a caregiving role was examined retrospectively and future caregiving intentions were assessed.;A web-based questionnaire focusing on decision-making processes, dynamics, and satisfaction; service needs; and intent to continue caregiving in the future was completed by 1,073 adult sibling caregivers from across the United States. Results were analyzed using logistic and multiple linear regressions to test hypotheses, with interaction effects examined to identify the impact of sibling caregivers' stage of life on caregiving decision-making satisfaction and future caregiving intent.;Results revealed sample demographics rarely seen in sibling caregiving research. Many respondents were caring for siblings unaffiliated with I/DD services and nearly one-third of siblings with I/DD were living independently, with another 45% living with respondents. Sibling relationship strength was associated with decision-making satisfaction among caregivers between young adult and early middle-age caregivers. Though reported need for services outstripped service receipt 5:1, the study found that service receipt was associated with decision-making satisfaction. Overall, respondents reported strong intent to continue providing care in the future.;Though study design precludes inference of causality, supporting sibling relationships may increase satisfaction with caregiving decisions among siblings choosing to provide care. Likewise, provision of needed services may enhance caregiving decision-making satisfaction. Additional research is needed to assess effectiveness of such interventions.
机译:兄弟姊妹的照料者对智力/发育障碍(I / DD)政策和实践具有越来越重要的意义。随着患有I / DD的人及其照顾父母的年龄的增长,越来越多的家庭依靠成年兄弟姐妹提供照料。如今,患有I / DD的人中有70%与家人生活在一起;据估计,多达20%的人可能与兄弟姐妹住在一起。兄弟姐妹的照料有可能满足I / DD个体日后生活护理方面不断增长的社会需求。但是,服务系统通常无法满足兄弟姐妹提供照料的需求。对兄弟姐妹如何成为照料者及其照料需求的了解不足,阻碍了为提供照料或考虑是否接受照料的兄弟姐妹提供帮助的努力;本研究旨在发现与成功的兄弟姐妹照料结果相关的因素并调查兄弟姐妹照料者的需求信息,服务和决策协助。对担任护理角色的最初决策进行了回顾性检查,并对未来的护理意图进行了评估。基于网络的问卷,重点关注决策过程,动态和满意度;服务需求;来自美国各地的1,073名同级成年同胞照顾者完成了将来继续看护的意图。使用逻辑回归和多元线性回归分析结果以检验假设,并检验相互作用效应以鉴定兄弟姐妹照料者的生活阶段对照料者的决策满意度和未来照料者意图的影响;结果揭示了兄弟姐妹照料者研究中很少见的样本人口统计数据。 。许多受访者正在照顾与I / DD服务无关的兄弟姐妹,而将近三分之一的I / DD兄弟姐妹是独立生活的,另有45%与受访者生活在一起。兄弟姐妹之间的关系强度与年轻人和早期中年照顾者之间的决策者满意度相关。尽管报告的服务需求超过了服务收据5:1,但研究发现服务收据与决策满意度相关。总体而言,受访者表示未来有继续提供护理的强烈意愿。;尽管研究设计排除了因果关系的推断,但支持兄弟姐妹关系可能会增加对选择提供护理的兄弟姐妹中照料决定的满意度。同样,提供所需的服务可以提高护理决策的满意度。需要进行其他研究以评估此类干预措施的有效性。

著录项

  • 作者

    Zendell, Anna L.;

  • 作者单位

    State University of New York at Albany.;

  • 授予单位 State University of New York at Albany.;
  • 学科 Social Work.
  • 学位 Ph.D.
  • 年度 2010
  • 页码 248 p.
  • 总页数 248
  • 原文格式 PDF
  • 正文语种 eng
  • 中图分类
  • 关键词

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