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- Title
Living With Hepatocellular Carcinoma Near the End of Life: Family Caregivers' Perspectives.
- Authors
Hansen, Lissi; Rosenkranz, Susan J.; Wherity, Kathleen; Sasaki, Anna
- Abstract
Purpose/Objectives: To explore family caregivers' perspectives of caring for patients with terminal hepatocellular carcinoma (HCC) as patients approached the end of life. Research Approach: Longitudinal, qualitative descriptive design. Setting: Oregon Health and Science University in Portland and Veterans Affairs Portland Health Care System in Oregon. Participants: 13 family caregivers with a mean age of 56 years (range = 22-68 years). The majority of family caregivers were female (n = 10) and identified as White (n = 11). Methodologic Approach: Interview data were collected from family caregivers once a month for as many as six months, for a total of 39 interviews. Data were analyzed using conventional content analysis. Findings: Five core categories and nine subcategories were identified. From the time of the terminal diagnosis to the end of life, family caregivers felt unprepared, uncertain, and in need of information. They struggled with whether symptoms were HCC- or cirrhosis-related. Interpretation: Nurses can support family caregivers by eliciting their knowledge and concerns, and attending to symptom presentation and interpretation and to treatment challenges. Understanding challenges caregivers experience is crucial for developing interventions that address their desire for information, support, and help along the HCC disease trajectory. Implications for Nursing: Nurses play a critical role in preparing caregivers to understand the importance of pain assessment and management and early referral to palliative care.
- Subjects
OREGON; CAREGIVERS; CONTENT analysis; HEPATOCELLULAR carcinoma; INTERVIEWING; LONGITUDINAL method; RESEARCH methodology; RESEARCH funding; STATISTICAL sampling; TERMINALLY ill; UNCERTAINTY; QUALITATIVE research; QUANTITATIVE research; LIFESTYLES; INFORMATION needs; FAMILY attitudes; DESCRIPTIVE statistics
- Publication
Oncology Nursing Forum, 2017, Vol 44, Issue 5, p562
- ISSN
0190-535X
- Publication type
Article
- DOI
10.1188/17.ONF.562-570