Background

Family caregivers may experience difficulty maintaining meaningful contact with a relative with advanced dementia. Nevertheless, some family caregivers prefer to remain involved in the care of their relative after admission to a nursing home. Family involvement in the care is important but little is known about how this works in practice and what exactly is needed to improve it.

Objectives

To examine experiences of family caregivers, staff and volunteers with family caregiver participation in the Namaste Care Family program, a psychosocial intervention to increase quality of life for people with advanced dementia that may help family caregivers to connect with their relative. Further, we aimed to examine facilitators of and barriers to family participation.

Design

Descriptive exploratory qualitative design using semi-structured interviews.

Setting

Ten nursing homes in the Netherlands.

Participants

Ten family caregivers, 31 staff members and 2 volunteers who participated in the Namaste Care Family Program.

Methods

Qualitative interview study using thematic analysis. Interviews were held with family caregivers, staff members, and volunteers about their experiences with the Namaste Care Family program.

Results

In general, family caregivers experienced their involvement in the Namaste Care Family program as positive, particularly the meaningful connections with their relative. However, putting family involvement into practice was challenging. We identified three themes covering facilitators for and barriers to participation:

(1) Preferences of family caregivers for activities with their relative (Activities): practical activities matching one's own interests were seen as facilitating, while perceived lack of knowledge and reluctance to engage with other residents were barriers.

(2) Communication between family caregivers, staff and volunteers (Communication): providing clear information about the program to family caregivers facilitated their involvement. Feeling insecure inhibited family involvement.

(3) Personal context of family caregivers (Personal circumstances): feeling fulfillment and being appreciated facilitated involvement. Older age, having a family of their own, a job and complex family relations were barriers to family caregiver involvement.

Conclusion

To optimize family involvement, it is important to adopt a family-centered approach and provide training and guidance. Making a personal, comprehensive plan with family caregivers and offering them guidance can help them overcome their uncertainty and remove barriers to being more involved with a care program aiming to improve the quality of life of their relative. Also recommended is training for staff to improve communication with family caregivers.

The Namaste study is registered with the Netherlands Trial Register (NTR5692).

中文翻译：

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家庭参与痴呆症护理家庭计划：关于家庭、疗养院工作人员和志愿者经历的定性研究

背景

家庭照顾者可能难以与患有晚期痴呆症的亲属保持有意义的联系。尽管如此，一些家庭照顾者更愿意在入住疗养院后继续参与照顾他们的亲属。家庭参与护理很重要，但对于这在实践中如何运作以及改进它究竟需要什么知之甚少。

目标

调查家庭照顾者、工作人员和志愿者参与 Namaste Care Family 计划的家庭照顾者的经验，这是一种社会心理干预措施，旨在提高晚期痴呆症患者的生活质量，可能有助于家庭照顾者与他们的亲属建立联系。此外，我们旨在检查家庭参与的促进因素和障碍。

设计

使用半结构化访谈的描述性探索性定性设计。

环境

荷兰的十个疗养院。

参与者

参与 Namaste Care Family Program 的 10 名家庭护理人员、31 名工作人员和 2 名志愿者。

方法

使用主题分析的定性访谈研究。采访了家庭护理人员、工作人员和志愿者，了解他们在 Namaste Care Family 计划中的经历。

结果

总的来说，家庭照顾者认为他们参与 Namaste Care Family 计划是积极的，尤其是与他们的亲属之间的有意义的联系。然而，将家庭参与付诸实践具有挑战性。我们确定了三个主题，涵盖了参与的促进因素和障碍：

(1)家庭照顾者对与其亲属的活动（活动）的偏好：符合自己兴趣的实际活动被视为促进，而缺乏知识和不愿与其他居民接触则被视为障碍。

(2)家庭照顾者、工作人员和志愿者之间的沟通（沟通）：向家庭照顾者提供有关该计划的清晰信息有助于他们的参与。感到不安全会抑制家庭参与。

(3)家庭照顾者的个人环境（个人环境）：感到满足和被欣赏促进参与。年龄较大、拥有自己的家庭、工作和复杂的家庭关系是家庭照顾者参与的障碍。

结论

为了优化家庭参与，重要的是采用以家庭为中心的方法并提供培训和指导。与家庭护理人员制定个人、全面的计划并为他们提供指导可以帮助他们克服不确定性，并消除更多参与旨在提高亲属生活质量的护理计划的障碍。还建议对员工进行培训，以改善与家庭护理人员的沟通。

Namaste 研究已在荷兰试验登记处注册 (NTR5692)。