Antiviral treatment for hepatitis C imposes substantial burdens on patients, affecting their lives and the lives of those who are close to them. Treatment completion rates are low. Presumably patients' "supportive others" - spouses, long term partners, friends, etc. who generally provide social support - may provide support specifically in dealing with treatment. However, the prevalence of supportive relationships and the nature of those relationships that do exist for patients with HCV are unknown. In this study we will explore the caregiving relationships Veterans with HCV have, and whether and how those caregivers contribute to completion of HCV treatment.
To gather information about how informal caregivers interact with, and are helpful to, Veterans who are infected with hepatitis C (HCV) who are undergoing HCV treatment (or preparing to start treatment). Our study methods involve conducting semi-structured, qualitative interviews with Veterans infected with HCV and with their informal caregivers. By Informal caregivers we mean a person who knows about the Veteran's hepatitis C and has provided some support for their health and other life issues, and is not paid for this support. This could be a friend, relative, spouse, long term partner, colleague, etc. of the Veteran.
The design was a prospective qualitative study, using semi-structured qualitative interviews with Veterans infected with HCV and with their informal caregivers. We recruited 13 participant pairs (1 Veteran and 1 Caregiver) at the Minneapolis VAMC and 3 participant pairs at the Boston VAMC for a total of 32 participants. We conducted individual semi-structured qualitative interviews with each Veteran and the person they identified as playing a significant, supportive role in their management of HCV. The interviews were guided by a protocol with questions about relevant issues of caregiving, social support, and disease self-management. Transcripts were coded and analyzed.
Approximately half of the veteran-caregiver dyads were marital or intimate partners; the remaining caregivers included friends, siblings, and adult children of the veterans. All patients were male, while most caregivers were female. (1) CAREGIVING ACTIVITIES: Caregivers provided instrumental support, including transportation and assistance with housework and shopping; emotional support through listening to veterans' difficulties and providing encouragement; and informational support by helping veterans recall and understand medical information given to them at appointments. (2) VETERAN-CAREGIVER RELATIONSHIP: Emotional interactions were complicated; while many dyads reported increased tension, some also experienced greater closeness and fulfillment within the relationship. Caregivers' support was appreciated, yet it could also threaten veterans' feelings of self-sufficiency and independence as they struggled with limitations secondary to side effects and their commitments to complete their course of treatment. (3) BURDEN: Caregivers experienced both emotional and logistical burdens. The primary source of burden was veterans' depression, irritability, and fatigue caused by antiviral therapy. Awareness of the stigma associated with HCV was also present, and several caregivers worried about the future should treatment fail. Among intimate couples, challenges to sexual intimacy secondary to veterans' fatigue and anemia were also present. Logistically, for some caregivers, employment limited their ability to engage in caregiving activities. (4) NEEDS: Caregivers' needs encompassed both informational and emotional support. While some caregivers attended the veterans' medical appointments regularly, many only received second-hand information about HCV from veterans and wished they knew more so that they could better understand and support veterans. Finally, few had adequate sources of personal support and often felt alone through the treatment process, particularly if the veteran was an intimate partner.
Our study contributed to understanding how informal caregivers view their role, interact with HCV-infected Veterans, and what types of disease management and psychological support they provide. In other health conditions the caregiver burden is substantial and leads to psychological, physical, and financial strains. We found that similar burdens are experienced by HCV caregivers, and they are exacerbated by relationships that sometimes are more fragile and strained than for non-HCV populations. This study suggests that supporting these relationships would be beneficial for Veterans' chances of achieving treatment success. Part of this support might entail supporting the informal caregiver with information about HCV and the treatment process on an ongoing basis, not only at the start of treatment. It may also entail providing emotional/psychological support to informal caregivers who experience intense anxiety about the potential loss of a partner or family member if treatment is not successful.
- Bolton RE, Clark JA, Solomon J, Steinhauser KE. Health Information Technologies to Support Management of Treatment Regimens: Perspectives of Veterans and their Caregivers in VHA. Poster session presented at: American Public Health Association Annual Meeting and Exposition; 2015 Oct 31; Chicago, IL.