College of Nursing, University of Utah, Salt Lake City.
Utah Caregiver Support Program, Utah Division of Aging & Adult Services, Salt Lake City.
Gerontologist. 2020 Aug 14;60(6):1169-1178. doi: 10.1093/geront/gnz137.
The majority of long-term care needs are placed upon family members who often receive minimal support. In this study, we collaborate with family caregivers to create an ethnodrama about their experience and assess outcomes of participation, including caregiver well-being.
Participants met over 4 months to discuss their roles as informal caregivers. Discussions were analyzed in a two-phase process and themes were developed into a script. Member checks included script review and revisions, culminating in viewing a professional performance of the play followed by a post-performance discussion and reflection. Data were gathered at six timepoints to assess caregiver well-being and longitudinal analysis was used to assess change during the course of the intervention.
Twenty-two caregivers completed intervention activities. Participant reactions to the process evolved overtime, from an initial hesitance about what individuals had to offer leading to an acknowledgement of feeling heard and a desire to help others. Caregivers had high levels of burden and positive perceptions towards caregiving. Those with high levels of self-rated health had the lowest levels of burden and the most positive perceptions of caregiving.
Developing an ethnodrama in partnership with caregivers is a unique and feasible method of caregiver support, mentoring, reflexivity, and meaning making. Promoting caregiver health early in the caregiving trajectory has the potential of reducing burden and elevating positivity towards caregiving.
大多数长期护理需求都落在家庭成员身上,而他们往往只得到很少的支持。在这项研究中,我们与家庭照顾者合作,创作了一部关于他们经历的民族志剧,并评估了参与的结果,包括照顾者的健康状况。
参与者在四个月的时间里会面,讨论他们作为非正式照顾者的角色。讨论分两个阶段进行分析,并形成主题脚本。成员检查包括脚本审查和修订,最终观看了专业演出的戏剧,随后进行了演出后的讨论和反思。在六个时间点收集照顾者健康状况的数据,并使用纵向分析评估干预过程中的变化。
22 名照顾者完成了干预活动。参与者对该过程的反应随着时间的推移而演变,从最初对个人有什么贡献的犹豫,到承认被倾听的感觉,以及帮助他人的愿望。照顾者的负担很重,但对照顾工作的看法很积极。自评健康水平高的人,负担最低,对照顾工作的看法最积极。
与照顾者合作制作民族志剧是一种独特而可行的照顾者支持、指导、反思和赋予意义的方法。在照顾者的护理轨迹早期促进照顾者的健康,有可能减轻负担,提高对照顾工作的积极性。