Family Caregiving Role Adjustment and Dyadic Mutuality

Family caregiving is recognized as a significant public health problem, with approximately 66 million adult family caregivers in the United States providing services valued at an estimated $450 billion per year. These individuals are considered informal caregivers, in contrast to formal, paid caregivers such as nurses. Family caregivers suffer role strain and burden of caring that increases their risk for morbidity and mortality, which is the reason why they have been the focus of much caregiver research in recent decades. Improving health outcomes for family caregivers of cancer patients has involved developing approaches to reduce stress by boosting caregiver preparedness, mastery, and self-efficacy; however, in recent years there has been a progressive shift in the way the cancer caregiving experience has been characterized. This characterization has moved away from a focus on the individual to a focus on the caregiver-patient dyad. This shift has occurred, in part, because research has shown that each person in the dyad impacts the way in which the other person adjusts to his/her new role and responsibilities. Thus, the way this occurs is important since these adjustments not only influence the health of the dyadic relationship but also impact the couple s overall well-being.

Current focus on mutual or dyadic coping with cancer diagnosis and treatment stems from the understanding that caregivers and patients work individually, but also together to manage their shared stress and to make meaning out of their mutual experience. Because of this, mutuality and interdependence in dyadic coping extend beyond social support. Dyads collaborate, negotiate, and problem-solve to jointly manage stress and make decisions related to a diagnosis such as cancer. However, there has been little systematic inquiry into the dynamics of shared role adjustment in the cancer family caregiving dyad even though the stress of chronic illness appears to affect both the patient and the caregiver s well-being. The social experience of managing an illness such as cancer and the adjustments made to accommodate the new life situation are the first steps in what is often a prolonged disease trajectory that will require many other changes and transitions along the way.

Therefore, the primary objective for this study conducted in phase one is to explore family caregiver and care recipient mutual negotiation of roles and responsibilities by gaining insight into the social experience of cancer family caregiving that will have application to practice and guide further study. Phase two is contingent upon sample size, with the goal to further explore quantitative measures of individual caregiver and patient as well as dyadic well-being with regard to role adjustment and mutuality. A particular focus will be on dyads who are flourishing and those who are collaborating, to determine what they are doing differently.

A convergent parallel mixed methods study will be conducted using a grounded theory approach to data collection and analysis. A purposive sample of cancer patient participants and their designated family caregiver will be recruited from the National Institutes of Health Clinical Center. Final sample size will depend on conceptual and theoretical saturation, with an anticipated sample to include approximately 20 caregiver-patient dyads. A focused interview guide with open ended questions and probes will be used. During data collection and analysis, data will be compared to previous interviews and to the literature so that gaps in the developing framework can be identified and questions for subsequent interviews adjusted. To capture the experiences and perceptions of the interviewee, interviews with caregivers and care recipient participants will be conducted separately and by the same researcher. During analysis, both interviews will be analyzed on the level of the patient, of the family caregiver, and of the dyadic interaction (e.g. of categories and themes) between the two. Participants will also complete a socio-demographic questionnaire, Neuro QoL Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities-Short Forms, the Family Caregiving Inventory for Mutuality Scale, and the Mental Health Continuum-Short Form. This quantitative data will be triangulated and merged with conceptual categories from the caregiver and the care recipient interviews and will be used to compare subgroups to further illuminate qualitative findings.

Sacrifices caregivers make can lead to burden and stress, or to positive adjustment and growth. Through a better understanding of role adjustment and dyadic mutuality, we believe it will be possible to identify novel ways to support caregivers and their patients as they cope day to day and look toward the future.