Impact of Familism On Latino Caregivers' Experience

Background and Purpose

It is an oft-repeated tenet that Latinos' value of familism, a strong attachment of individuals with their families accompanied by loyalty and reciprocity, leads to greater involvement of extended family in caring for sick members and reduced perception of burden, since providing care is expected, valued, and culturally syntonic. Despite this, some Latino caregivers report insufficient support from family in caring for members with Alzheimer's disease (AD). Furthermore, while some studies report lower appraisals of stress and greater perceived benefits of caregiving by Latinos than Caucasians, others report a higher prevalence of depression among Latinos, a finding at odds with the supposed moderating impact of familism. Empirical investigation of cultural influences on Latino dementia caregivers has been limited. While familism has been explored between Hispanic subgroups, individual-level differences in endorsement of familism as compared to actual caregiving experience and resultant feelings within Hispanic subgroups that might explain current contradictory findings have not been fully explored. Thus, we selected a qualitative approach for a richer and greater understanding.

Methods

Following intensive recruitment, 27 self-selecting Latino caregivers in NYC were interviewed regarding their perception of how cultural values, religious beliefs, and acculturation impacted their caregiving experience. Notes from interviews lasting 1 1/2 to 2 hours were analyzed for core concepts using a categorical-content approach to narrative analysis. Initial open codes and abstract themes from interviews were categorized and compared across respondents in an iterative process. A research assistant coded a subset of interviews for interrater reliability.

Results Three broad categories for the way familism impacts these caregivers' experience emerged. For one group, mostly older participants born outside the U.S., familism facilitates caregiving, as it offers a framework for couching the difficult work often entailed. This group highly endorsed familism, was less acculturated, and expressed low levels of depression and sense of caregiving burden, as the concept would predict.

A second group finds the concept of familism no longer relevant because of acculturation or fragmentation of the family through immigration. For a third group familism actually increases the stress of caregiving. These caregivers abstractly adhere to the concept of familism, but find the reality of day-to-day care difficult. This discrepancy between what they are supposed to feel and how they actually feel creates a sense of guilt and tension. For a subgroup in this group, while they personally do not adhere to familism, they are aware of their community's endorsement, and feel external pressure to provide care. This outside expectation increases the stress of caregiving for them.

Conclusions and Implications

These findings refine our understanding of the varied impact of familism and have implications for providers of services to Latino persons with AD and their families. First, given the diversity among the needs and experiences of these families, services must be tailored accordingly. Secondly, if we don't critically examine the concept of familism, we run the risk of failing to understand the experience of significant groups of Latino caregivers, including those for whom it actually increases the stress of caregiving.