Stjernswärd Sigrid, Hansson Lars
Department of Health Sciences, Lund University, Lund, Sweden.
JMIR Res Protoc. 2014 Feb 14;3(1):e8. doi: 10.2196/resprot.3051.
Relatives of people with a mental illness who live together can experience additional burdens that may require support. A Web-based tool including a psychoeducation module, a diary, and a password-protected forum was developed to support relatives of a person with depression.
The objective of our study was to explore participants' use of the Web-based tool, with focus on the forum, and to assess its potential health and psychosocial benefits.
Twenty-five people participated in this explorative open trial. Self-rating instruments assessing caregiver burden, stigma, and the tool's usability were analyzed with Carer QoL7-D, DISC-12, and a system usability scale. A summary measure of subjective burden was assessed with CarerQoL-VAS. The forum posts were studied using content analysis.
The majority reported fulfillment from their caregiving tasks (84%, 21/25), and had relational problems (76%, 19/25), their own mental health problems (72%, 18/25), support (72%, 18/25), and difficulties coordinating daily activities with caregiving (56%, 14/25). Most (72%, 18/25) reported having been able to use their inner strength to cope with stigma and discrimination, 64% (16/25) had concealed or hidden the person's condition, and 40% (10/25) reported having been avoided or shunned by people who knew about the illness. Forty-eight percent (12/25) reported unfair treatment from family; 40% (10/25) in marriage or divorce and 36% (9/25) from mental health staff. Almost one-third (28%, 7/25) reported having stopped themselves from having a close personal relationship. Participants' subjective assessment of the tool's usability resulted in a mean of 61.5 (range, 22.5-90; possible total value 0-100; >70=good). Ten people participated in the forum; content analysis resulted in five categories describing relatives' situations: balancing the caregiver's role and relationship to the patient; their own lives and need for support; resources and patient advocacy; a looming shadow on leisure, social, and professional life; and interaction and social support.
Further studies are needed to explore optimal ways of using Web-based tools to address support for relatives of a person with mental illness. Professional feedback may enhance the use and value of online communities.
与患有精神疾病的人共同生活的亲属可能会承受额外的负担，这可能需要得到支持。我们开发了一个基于网络的工具，其中包括一个心理教育模块、一本日记和一个受密码保护的论坛，以支持抑郁症患者的亲属。
我们研究的目的是探讨参与者对基于网络的工具的使用情况，重点是论坛，并评估其潜在的健康和心理社会效益。
25人参与了这项探索性开放试验。使用照顾者生活质量7维度量表（Carer QoL7-D）、歧视量表12项版（DISC-12）和系统可用性量表分析评估照顾者负担、耻辱感和工具可用性的自评工具。使用照顾者生活质量视觉模拟量表（CarerQoL-VAS）评估主观负担的综合指标。通过内容分析研究论坛帖子。
大多数人表示从照顾任务中获得了成就感（84%，21/25），存在人际关系问题（76%，19/25）、自身心理健康问题（72%，18/25）、获得了支持（72%，18/25），以及在将日常活动与照顾协调方面存在困难（56%，14/25）。大多数人（72%，18/25）报告称能够利用自身内在力量应对耻辱感和歧视，64%（16/25）的人隐瞒了患者的病情，40%（10/25）的人报告称被知晓该疾病的人回避或冷落。48%（12/25）的人报告称受到家人的不公平对待；40%（10/25）涉及婚姻或离婚问题，36%（9/25）涉及来自心理健康工作人员的问题。近三分之一（28%，7/25）的人报告称自己避免建立亲密的个人关系。参与者对该工具可用性的主观评估平均得分为61.5（范围为22.5 - 90；可能的总分值为0 - 100；>70为良好）。10人参与了论坛；内容分析产生了五个类别，描述了亲属的情况：平衡照顾者角色与与患者的关系；他们自己的生活和对支持的需求；资源与患者权益倡导；休闲、社交和职业生活上的潜在阴影；以及互动与社会支持。
需要进一步研究以探索使用基于网络的工具来为患有精神疾病的人的亲属提供支持的最佳方式。专业反馈可能会提高在线社区的使用和价值。
