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Exploration of Families' Experiences Caring for Loved Ones With Advanced Ovarian Cancer
Kalli Stilos1, Margaret Fitch, Amy Eleanor Nolen
1Kalli Stilos, MScN, RN, CHPCN(C), is clinical nurse specialist, Palliative Care Consult Team, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada; and adjunct clinical faculty, University of Toronto's Lawrence Bloomberg Faculty of Nursing. Margaret Fitch, PhD, RN, is consultant professor (Adjunct), University of Toronto's Lawrence Bloomberg Faculty of Nursing. Amy Eleanor Nolen, Msc, MBBS, is palliative care physician, Palliative Care Consult Team, Sunnybrook Health Sciences Centre, Toronto; and lecturer, Department of Family and Community Medicine, University of Toronto, Ontario, Canada. Tracey DasGupta, MN, RN, CON(C), is director, Interprofessional Practice, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada; and lecturer, University of Toronto's Lawrence Bloomberg Faculty of Nursing. Marilyn Sapsford, MDiv, BA, is manager, National Programs, Ovarian Cancer Canada, Toronto, Ontario. Alison McAndrew, BA, PgDip RAP, is senior specialist, Psychosocial Oncology, Nursing and Patient Education, Clinical Programs and Quality Initiatves, Cancer Care Ontario (CCO), Toronto, Ontario, Canada. Shari Moura, MN, RN, CON(C), CHPCN(C), is clinical nurse specialist, Princess Margare Cancer Centre, University Health Network; and is adjunct lecturer, Lawrence Bloomberg Faculty of Nursing, University of Toronto, Ontario, Canada.
Abstract:
Ovarian cancer is challenging, both physically and psychologically, because of the advanced nature of the disease at diagnosis, adverse effects of the disease and treatment, and impact on roles and responsibilities. The family plays an integral role in promoting and maintaining the health of family caregivers, as well as providing physical and emotional support. The purpose of this study was to explore the experience of family caregivers caring for their loved ones with advanced ovarian cancer. Thirteen family caregivers were interviewed. The analysis of the data revealed 4 significant challenges that characterized the caregiving experience over time: confronting the initial diagnosis, dealing with fluctuations in physical status, confronting a turning point, and facing decline and death. Woven throughout these challenges, family caregivers routinely described difficulties in accessing information and navigating the health care system, which caused them added concern and frustration.