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Betty J. KramerPh.D., University of Washington |
Family Caregiving: Understanding Variations in Adaptation
The main thrust of my earlier research agenda focused on understanding the experience and variation found among family members caring for older adults with cognitive and physical impairments. My research highlighted the positive dimensions that often accompany the more challenging or negative dimensions of the family caregiving experience, gender differences in caregiving, interpersonal predictors of caregiver well-being, and the experience of the male caregiver. My more recent caregiving research has addressed the distinctive experience of family members providing care at the end-of-life and the transition into “end-stage” caregiving.
Understanding and Improving Care at the End-of-Life
Another line of my work has focused on understanding and improving care at the end of life through attention to three lines of enquiry. First, I have sought to determine and enhance the role of social work in the provision of palliative and end-of-life care and related research. I have documented insufficiencies in end-of-life care content in leading social work textbooks, helped to develop competencies for social workers in palliative care and put forth the national research agenda for social work in palliative and end of life care.
Second, I have studied innovations in end-of-life care for low-income elders with advanced chronic disease to learn about the distinctive challenges experienced by interdisciplinary team members in a fully integrated managed care program, and implications for program development, practice, policy and future research. Building upon this work, I have assessed the feasibility of integrating hospice consultation to address some of these challenges and improve the provision of palliative care.
Third, my current research agenda focuses on understanding conflicts in families that may arise in the context of palliative and end-of-life care. Through a qualitative investigation of the phenomenon of family conflict, I have developed an explanatory matrix of family conflict at the end of life depicting the nature of end of life conflict, family context, conditions, contributing factors, intervening processes and consequences. I have several current projects underway that will allow me to better identify families who are at greatest risk of family conflict and begin to test this explanatory model. One study is looking at how the quality of care provided at the end of life to persons with lung cancer, precipitates the development of conflict and how both quality of care and family conflict affect survivor well-being. Another study is making use of the Wisconsin Longitudinal Study (WLS), a large sample survey of men and women who graduated from Wisconsin high schools in 1957 and were re-interviewed at three points in time. We are investigating the impact of WLS respondent’s end-of-life planning on the psychological and financial well-being of bereaved family members. We are investigating three possible pathways linking end-of-life planning with survivor well-being: the quality of care received by the decedent, conflicts surrounding end-of-life care and the nature of the dying process. Finally, through surveys of primary family caregivers of hospice patients we will be documenting descriptive statistics on family conflict, and comparing families with and without conflict in terms of historical relationship patterns, patient and family caregiver characteristics, caregiving strain, family involvement in care, social support, advanced care planning, and psychological well-being. We will be using the explanatory matrix of family conflict to examine predictors and consequences of family conflict.
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