The Caregiving Experience in a Racially Diverse Sample of Cancer Family Caregivers

Mary Lou Siefert, DNSc, AOCN; Anna-leila Williams, PhD(c), MPH, PA-C; Michael F. Dowd, PhD; Lolita Chappel-Aiken, EdD, RN; Ruth McCorkle, PhD, FAAN

Disclosures

Cancer Nurs. 2008;31(5):399-407. 

In This Article

Abstract and Introduction

Abstract

The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by cancer family caregivers. Missing among the predictor variables are the differences by or influence of race/ethnicity. The purpose of this study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics, and determine if any of the patient and family characteristics, including race/ethnicity, predicted outcomes. Cross-sectional surveys were used to determine sociodemographics, psychological and physical health, and burdens of caregiving among 54 caregivers. The analysis consisted of descriptive methods, including frequencies and t tests, and regression modeling. The sample was 35% African American or Hispanic. African American and Hispanic caregivers were younger than white caregivers and more often women, were rarely the spouse of the patient, and frequently had other dependents, including children and older parents. African American and Hispanic caregivers reported lower incomes and more burden related to finances and employment than did white caregivers. When controlling for sociodemographic factors, there was no difference by race/ethnicity on the outcome measures. The experience of caregiving may supersede race/ethnicity and may be its own cultural entity. Areas of concern include the interrelationship between socioeconomic status and race/ethnicity, the absence of cultural frameworks to direct caregiver research, and the question of cultural relevance of measurement tools.

Intorduction

The psychological toll of caring for a family member with cancer has been well documented over the years.[1,2,3,4,5] Anxiety and depression are the most often cited cancer family caregiver impairments, with prevalence estimates for depression ranging from 12%[2] to 30%[6] and estimates for anxiety at 35%.[2] In several studies, the cancer family caregiver's mental health burden exceeded that of the person with cancer.[7,8,9,10]

The literature supports a variety of predictor variables to account for the psychological and stress burden experienced by family caregivers of individuals with cancer. The predictor variables include sleep deprivation;[11,12,13] perceived burden of caregiving;[14,15] caregiver shift in role, responsibility level, and leisure activity;[16] and lifestyle interference and social isolation.[17,18] Notably missing among the predictor variables is the influence of race and ethnicity, most likely secondary to the paucity of data on minority cancer family caregivers.

The noncancer caregiver literature, dominated by studies of family caregivers of those with dementia, has matured such that ethnic and racial differences in caregiver stressors, resources, and outcomes are apparent.[19,20,21,22,23] However, interpretation of these racial and ethnic differences and their implications continue to challenge researchers and practitioners. Major areas for cogitation include the spurious nature of racial and ethnic categorization;[19] the interrelationship between socioeconomic status and race/ethnicity;[19,21,24] the use of race and ethnicity as proxies for culture, values, and beliefs; the absence of cultural frameworks to direct caregiver research; and the question of cultural relevance and sensitivity of measurement tools.[21]

Although it is highly probable that the concerns cited in the noncancer caregiver research apply to cancer family caregivers, it is necessary to discern fundamental characteristics of minority cancer family caregivers prior to more sophisticated investigations. It is possible that the physical and time demands and existential concerns imposed by a cancer diagnosis usurp any racial and ethnic differences. The purpose of our study was to describe the sample, explore differences in outcomes by patient and family caregiver characteristics among a racially and ethnically diverse sample, and determine if any of the patient and family caregiver characteristics, including race/ethnicity, predicted outcomes. Specifically, the following research questions were explored:

  1. Are there any predictors or variance by patient and caregiver characteristics, including race/ethnicity, related to outcomes of burden, reactions, and responses to caregiving?

  2. Do caregiver characteristics, burden, reactions and responses to caregiving, predict outcomes by race/ethnicity, independent of demographic and socioeconomic characteristics?

The conceptual framework Labor of Caregiving[25] guided the selection of study variables (see "Measurement" section). Labor of Caregiving was developed from in-depth interviews with family caregivers of individuals with advanced cancer or AIDS. Four phases of the caregiving experience over the illness trajectory emerged: "Becoming a Caregiver," "Taking Care," "Midwifing the Death," and "Taking the Next Steps." Each phase includes distinct themes, specifically, "Becoming a Caregiver" includes facing the present, choosing to care, looking to the future, and developing competency; "Taking Care" includes managing the illness, facing and preparing for dying, managing the environment, coming to know one's own strength, personal suffering, responding to family issues, and struggling with the healthcare system; "Midwifing the Death" includes waiting and doing and hoping for a good death; and "Taking the Next Step" includes experiencing relief, tying up loose ends, dealing with regrets, and moving ahead. The study presented here focuses on the first 2 phases, "Becoming a Caregiver" and "Taking Care."

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