We found a match
Your institution may have access to this item. Find your institution then sign in to continue.
- Title
Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences.
- Authors
Basile, Melissa J; Dhingra, Lara; DiFiglia, Stephanie; Polo, Jennifer; Portenoy, Russell; Wang, Janice; Walker, Patricia; Middour-Oxler, Brandi; Linnemann, Rachel W; Kier, Catherine; Friedman, Deborah; Berdella, Maria; Abdullah, Robert; Yonker, Lael M; Markovitz, Martha; Hadjiliadis, Denis; Shiffman, Melissa; Fischer, Francine; Pollinger, Sophie; Hardcastle, Margot
- Abstract
To prevent or mitigate chronic illness burden, people with cystic fibrosis (pwCF) and their family caregivers need primary (generalist-level) palliative care from the time of diagnosis forward. We used qualitative methods to explore their preferences about a screening-and-triage model (" Improving Life with CF ") developed to standardize this care. We purposively sampled and interviewed 14 pwCF and caregivers from 5 Improving Life with CF study sites. Thematic analysis was guided by a priori codes using the National Consensus Project's Guidelines for Quality Palliative Care. Participants included 7 adults and 2 adolescents with CF (3 with advanced disease), 4 parents, 1 partner (7 women; 5 people of color). Few were familiar with palliative care. Illness burden was described in multiple domains, including physical (e.g., dyspnea, pain), psychological (e.g., anxiety), and social (e.g., family well-being; impact on work/school). Most preferred survey-based screening with care coordination by the CF team. Preferences for screening approaches varied. PwCF and caregivers experience illness burden and are receptive to a CF-team delivered primary palliative care screening-and-triage model with flexible processes.
- Subjects
CYSTIC fibrosis treatment; CAREGIVER attitudes; MEDICAL quality control; MEDICAL triage; MEDICAL screening; BURDEN of care; INTERVIEWING; HUMAN services programs; PRIMARY health care; PATIENTS' attitudes; QUALITATIVE research; QUALITY of life; RESEARCH funding; THEMATIC analysis; JUDGMENT sampling; PALLIATIVE treatment
- Publication
Journal of Patient Experience, 2023, p1
- ISSN
2374-3735
- Publication type
Article
- DOI
10.1177/23743735231161486