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End-of-Life Care Studies
The School of Social Work's major researchers on end-of-life care are Betty Kramer and Tracy Schroepfer, exploring topics such as family conflict at end-of-life, psychosocial needs of terminally ill elders, and cancer care access and quality in under-served communities in Wisconsin. View ongoing studies below.
Family Conflict at the End-of-Life: The dying process is often painful for family members to witness and how family members respond may have a significant impact on family relationships and functioning. Many families report high stress and disagreements during the dying process and family conflict is the strongest predictor of ethics consults, that creates enormous challenges for health care providers. As part of a statewide survey on the Assessment of Cancer CarE and Satisfaction (ACCESS) in Wisconsin, Professor Kramer and her colleagues collected data to examine the correlates, predictors and consequences of family conflict. Two major findings emerged from this study. After controlling for contextual factors and time since death, complicated grief symptoms were higher among families with lower prior conflict but higher conflict at the end-of-life, who had family members who had difficulty accepting the illness, and who were caring for patients with greater fear of death. Second, family conflict was a significant predictor of perceived success for both the patient and the family; indicating that when family conflict was present, teams were less successful in addressing end-of-life care needs.
Professor Kramer also has completed a mixed-methods study to further understand the phenomenon of family conflict at the end-of-life, from the perspective of family members and hospice staff. She has collected collected 161 surveys from hospice family members, conducted 15 in-depth qualitative interviews with primary family caregivers who were concurrently experiencing family conflict, and 10 discipline specific focus groups with interdisciplinary team members.
Lastly, Professor Kramer is working with Dr. Debby Carr on The Wisconsin Study of Families and Loss (WISTFL) that is in investigating the experiences, feelings, and opinions of the family members of Wisconsin Longitudinal Study (WLS) participants who have recently passed away. WLS participants include men and women who graduated from Wisconsin high schools in 1957, and were re-interviewed at ages 36 (in 1975), 53-54 (in 1993), and 64-66 (in 2003-05).
The WISTFL study will examine the impact of both medical and financial end-of-life planning on the psychological and financial well-being of two bereaved significant others who are deemed most knowledgeable about the death. Because the WLS obtained detailed data on the decedents’ end-of-life planning prior to the time of death, they have the unique opportunity to examine prospectively the influence of end-of-life planning. They also will investigate three possible pathways linking end-of-life planning with survivor well-being: the quality of care received by the decedent, the nature of the dying process, and conflicts surrounding end-of-life care.
Innovations in End-of-Life Care for Low-Income Elders
Funded by a grant from the Milwaukee County Department on Aging, this study uses a multi-method approach, including documentation review of current protocols and procedures, focus groups and in-depth interviews with care managers from care management units contracted by the Milwaukee County Department on Aging (MCDA), key staff from MCDA, and local end-of-life care experts. This study identified major areas of end-of-life care needs of the FC members, primary objectives and process goals addressed by the care management teams, and challenges and barriers to coordinating end-of-life care for FC members across different long-term and acute care settings. This in-depth examination and documentation of how end-of-life care is coordinated and delivered in Wisconsin Family Care provides important practice and policy implications for MCDA’s Care Management Organization (CMO) and other CMOs participating in the WFC program.
Assessing the Psychosocial Needs of Terminally Ill Elders
(P.I. Tracy Schroepfer) Funded by the Hartford Faculty Scholars Program, Professor Tracy Schroepfer recruited 100 terminally ill Wisconsin elders from 13 hospices across southern Wisconsin for face-to-face interviews. Using both previously-tested questions and developing new questions, she measured religiosity/spirituality, depression, the intensity, fear, and affect of pain, quality of life (e.g., feelings of independence, purpose, usefulness, hopefulness, dignity), and the elders’ mind frames toward dying. She also created open-ended questions to explore more deeply the motivating factors of social support and control. Several papers have been published from this study and the assessment instrument is nearing completion.
Access to and the Quality of Cancer Care Received by Medically Underserved Communities in Wisconsin. The aim of this research is to gain a deeper understanding of the access to, and the quality of cancer care received by medically underserved communities and communities of color. Research from the last few decades has shown that many individuals have poor access to appropriate cancer screening and treatment, particularly in medically underserved communities and communities of color. Professor Tracy Schroepfer’s first research project in this area was requested by a tribal community wanting an assessment of their cancer survivors’ experiences with cancer screenings, diagnosis, accessing to treatment, and communication with medical personnel. A community-based participatory research (CBPR) methodology was employed, and together with the community, Dr. Schroepfer developed a culturally appropriate mail survey, which was sent to Indian Health Clinic patients who had cancer in the past five years. Building on the tribal community research, Dr. Schroepfer is working in partnership with eight Wisconsin medically underserved communities on the issue of cancer. The eight participating communities include the Latino community in Dane County; an African American community in Milwaukee; the rural community of Cashton; the Wisconsin Hmong community; the urban American Indian community in Milwaukee; and the Red Cliff, Bad River, and Lac Courte Oreilles tribes.