Coping Strategies and Crucial Supports In the Context of a Complex Chronic Illness: Recommendations for Psychosocial Intervention from Individuals Living with Long-COVID

Background and Purpose: Long-COVID is a complex, multi-system chronic illness affecting millions of individuals post-acute COVID-19 infection. It is associated with over 200 symptoms, including fatigue, chest pain, joint pain, memory loss and difficulty concentrating. Long-COVID can have profound psychosocial impacts, affecting mental health, family and social relationships, and employment. These impacts underscore the critical need to identify effective psychosocial interventions for long-COVID, yet limited research has explored individuals with long-COVID’s own recommendations for addressing unmet needs. The present study addressed this crucial gap by eliciting participant recommendations for psychosocial intervention through an in-depth qualitative interview study.

Methods: Multiple recruitment strategies were employed to recruit a racially, socioeconomically and age diverse sample. Recruitment methods included outreach to patients of an academic medical center’s long-COVID clinic and patient-led long-COVID advocacy organizations, posting flyers in public locations such as libraries throughout the Hartford, CT area, outreach to community health clinic and hospital networks in New England through the authors’ professional networks, and tabling at community events such as a Black Family Wellness Event in Hartford, CT. Eligible participants were 18 years or older, lived in the U.S., and had a diagnosis of or met criteria for long-COVID according to a screening survey. Individual in-depth qualitative interviews were conducted with 30 participants with long-COVID, exploring the impact of long-COVID on work, mental health, and social/family life, interactions with the medical system, and eliciting recommendations for needed intervention strategies. Interviews were transcribed and data were analyzed according to the principles of thematic analysis (Braun & Clarke, 2006).

Results: Participants identified an array of potential intervention strategies to address the social and psychological repercussions of long-COVID. Many participants described dismissal, invalidation and lack of adequate knowledge about long-COVID among healthcare providers, describing the need for access to providers who are empathetic and crucially, knowledgeable about long-COVID treatment. Participants articulated how symptoms rendered managing complex tasks, including medical care, highly challenging, and identified case management and access to a central resource bank with long-COVID resources as potentially helpful supports. Participants reported experiencing social isolation, anxiety and depression, describing withdrawal from social engagement due to symptoms such as fatigue and/or fear of acquiring another Covid infection, with some having to exit the workforce or switch to remote jobs. Participants who continued to work highlighted strategies such as pacing their work tasks and using memory aids as crucial to maintaining employment. In response to social isolation and mental health symptoms, participants underscored the importance of access to both formal mental health support via psychotherapy and access to peer support from others living with long-COVID.

Conclusions and Implications: Findings have significant implications for social work practice, research and advocacy. Health social work researchers and practitioners should be at the forefront of developing, implementing and evaluating practice and policy interventions to address social isolation, mental health symptoms, case management support and unmet resource needs in the context of this complex chronic illness.