Schaffer Kristin M, Henry Maya L
Department of Speech, Language, and Hearing Sciences, The University of Texas at Austin, Austin, USA.
Aphasiology. 2023;37(7):1087-1111. doi: 10.1080/02687038.2022.2076281. Epub 2022 May 31.
Primary progressive aphasia (PPA) is a language-prominent dementia that fundamentally impacts the lives of not only the person with the diagnosis, but also their family members. While assuming a caregiving role, care partners are vulnerable to negative health and psychosocial consequences of their own. Support groups are one way to meet the needs of care partners, providing opportunities for individuals with common experiences to socialize, obtain knowledge about disorders, and learn coping strategies. Given that PPA is rare and that in-person support groups are sparse in the United States, there is a need for alternative meeting modalities, to overcome the limitations imposed by relative scarcity of potential participants, lack of appropriately-trained clinical professionals, and the logistical demands faced by overburdened care providers. Telehealth-based support groups provide care partners with opportunities to connect virtually with other care partners; however, research regarding their feasibility and benefit is limited.
This pilot study investigated whether a telehealth-based support group for care partners of persons with PPA is feasible and yields benefits in psychosocial functioning.
METHODS & PROCEDURES: Ten care partners of persons with PPA (7 females; 3 males) participated in a group intervention comprising psychoeducation about relevant topics, followed by group discussion. Meetings were held twice monthly for four months via teleconference. All participants completed pre- and post-intervention measures to examine support group satisfaction as well as psychosocial functioning, including quality of life, coping, mood, and caregiving perception.
OUTCOMES & RESULTS: Consistent group member participation across study phases supports the feasibility of this intervention model. Quantitative results from paired-samples permutation tests indicate no significant changes from pre- to post-intervention on psychometrically validated psychosocial measures. Qualitatively, results from an in-house Likert-type survey indicate positive outcomes in quality of life, social support, caregiving skills, and psychoeducation. Relatedly, post-intervention themes derived from a thematic analysis of written survey responses included: and .
Consistent with existing literature evaluating virtually-delivered care partner support groups in dementia and other acquired medical conditions, findings from this study support the feasibility and benefit of telehealth-based support groups for care partners of persons with PPA.
原发性进行性失语（PPA）是一种以语言功能为主的痴呆症，不仅对被诊断出患有该病的患者本人，而且对其家庭成员的生活都会产生根本性的影响。在承担照顾责任的过程中，照顾者自身容易受到负面健康和心理社会后果的影响。支持小组是满足照顾者需求的一种方式，为有共同经历的个人提供社交机会，获取有关疾病的知识，并学习应对策略。鉴于PPA较为罕见，且美国的面对面支持小组数量稀少，因此需要替代的会议形式，以克服潜在参与者相对稀缺、缺乏经过适当培训的临床专业人员以及负担过重的照顾者所面临的后勤需求等带来的限制。基于远程医疗的支持小组为照顾者提供了与其他照顾者进行虚拟联系的机会；然而，关于其可行性和益处的研究有限。
这项试点研究调查了为PPA患者的照顾者设立的基于远程医疗的支持小组是否可行，以及是否能在心理社会功能方面产生益处。
10名PPA患者的照顾者（7名女性；3名男性）参与了一项小组干预，包括有关相关主题的心理教育，随后进行小组讨论。会议通过电话会议每月举行两次，为期四个月。所有参与者在干预前后都完成了相关测量，以检查支持小组的满意度以及心理社会功能，包括生活质量、应对方式、情绪和照顾认知。
在研究的各个阶段，小组成员的参与情况一致，这支持了这种干预模式的可行性。配对样本排列检验的定量结果表明，在经过心理测量验证的心理社会测量指标上，干预前后没有显著变化。从定性方面来看，内部李克特式调查的结果表明，在生活质量、社会支持、照顾技能和心理教育方面取得了积极成果。相关地，对书面调查回复进行主题分析得出的干预后主题包括：以及。
与现有评估痴呆症和其他后天性疾病中虚拟提供的照顾者支持小组的文献一致，本研究的结果支持了为PPA患者的照顾者设立的基于远程医疗的支持小组的可行性和益处。
