Experiences of Family Caregivers Impacted By Huntington's Disease (HD): A Phenomenological Qualitative Interpretive Meta-Synthesis

Background/Purpose: The experience of caring for a family member who is ill has been perceived as a chronic stressor (Braithwaite, 1992). Huntington’s disease (HD) is a chronic neurodegenerative condition lasting up to 30 years, having a powerful impact on families, particularly caregivers who live with the fear of familial prevalence and genetic transmission (Kim et al., 2005). Previous studies on HD have primarily focused on disease management (Ravikumar et al., 2004); however, a few qualitative studies have concentrated on the experiences of family caregivers. The purpose of this study was to synthesize qualitative data from studies to explore the experiences of family caregivers of individuals with HD while utilizing Qualitative Interpretive Meta Synthesis (QIMS), an interpretive technique designed to capture the essence of a social phenomenon.

Methods: QIMS synthesizes multiple qualitative studies to gain a more comprehensive understanding of the caregiving experience of individuals caring for a loved one with HD. Purposive sampling was used to select studies relevant for the analysis. To identify appropriate studies, various electronic databases were searched. The following were the key criteria for the final sample: (1) a focus on the experiences of family caregivers affected by HD, (2) a sizable amount of qualitative data, and (3) articles published between January 1993 and April 2014.  The initial search generated approximately 363 articles. The researcher was able to narrow the search by eliminating 354 articles. The complete text of nine articles was reviewed for inclusion criteria. Five articles examined the lived experience of both the caregiver and the care recipient, and were thus rejected. The four selected articles for this QIMS generated 62 interviews and six focus groups with seven family caregivers in each group. Family caregivers’ experiences were utilized to extract themes. Triangulation of analysts, sources, and methods was used to increase methodological rigor.

Results: Analysis of four qualitative studies identified three themes: (1) lack of support, (2) loss of self, and (3) worries about family. The theme “lack of support” revealed that caregivers experience high levels of stress because they have little to no support. Loss of self related to the disintegration of several aspects of their lives. Neglecting one’s needs to fulfill caregiving obligations and duties impacts caregivers’ health, productivity, and intimacy. Worries about family related to HD having a substantial impact on the family system, particularly the change in roles within the family and the fear of familial prevalence and genetic transmission.

Conclusions and Implications: The quality of life (QoL) of family caregivers is compromised in many ways for HD family caregivers. The findings suggest that there are similarities with caregivers of other diseases; however, HD may need to be considered individually because of its unique impact on the family system, therefore tremendously impacting the QoL of family caregivers.  A spousal caregiver often has to worry about the genetic transmission to their children; an adult child caregiver may worry about carrying the gene. Living with this fear can be daunting, therefore limiting life choices of most family members, particularly the caregiver.