Family Caregiving Role Adjustment and Dyadic Mutuality
Condition: Family Caregiver and Patient Mutual Negotiation of Roles and Responsibilities
Study type: Observational

Summary: 
      Background:

      Cancer causes changes in the lives of patients and in the lives of their caregivers. Patients
      and caregivers feel stress and they affect each other as they deal with these changes. They
      each cope with cancer diagnosis and treatment on their own. They also cope together.
      Researchers want to explore this shared change of roles and responsibilities. They will do
      this by gaining insight into the social experience of cancer caregiving. They also want to
      better understand the ways caregiver/patient teams manage the cancer diagnosis and
      experience. This can help find new ways to support caregivers and their patients.

      Objective:

      To explore the shared change of roles and responsibilities of patients and caregivers by
      studying the social experience of cancer caregiving.

      Eligibility:

      English speakers ages 18 and older who are one of the following:

      A cancer patients at the NIH Clinical Center (CC)

      A caregiver of a CC cancer patient

      Design:

      Participants will have been screened by the CC.

      Patients and caregivers will be interviewed separately. This will last up to an hour and a
      half.

      Participants will complete online surveys.

      Participants may have a follow-up phone interview. This will last up to 15 minutes.
    

Detailed description: 
      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.
    

Observational model: Cohort
Time perspective: Prospective
Keywords: Cancer Caregivers; Cancer Patients; Role Adjustment; Mutuality; Well-Being