1. Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences.
- Author
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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, and Hardcastle, Margot
- 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 - 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. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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