A web-based supportive intervention for families living with depression: Content analysis and formative evaluation

Abstract

Background: 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. Objective: 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. Methods: 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. Results: 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. Conclusions: 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.