Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences
| Autor: | Melissa J Basile PhD, Lara Dhingra PhD, Stephanie DiFiglia PhD, Jennifer Polo MS, Russell Portenoy MD, Janice Wang MD, Patricia Walker MD, Brandi Middour-Oxler DNP, Rachel W Linnemann MD, Catherine Kier MD, Deborah Friedman PhD, Maria Berdella MD, Robert Abdullah MD, Lael M Yonker MD, Martha Markovitz MSW, Denis Hadjiliadis MD, Melissa Shiffman MA, LMSW, Francine Fischer, Sophie Pollinger BA, Margot Hardcastle BA, Nivedita Chaudhary MPH, Anna M Georgiopoulos MD |
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| Jazyk: | angličtina |
| Rok vydání: | 2023 |
| Předmět: | |
| Zdroj: | Journal of Patient Experience, Vol 10 (2023) |
| Druh dokumentu: | article |
| ISSN: | 2374-3743 23743735 |
| DOI: | 10.1177/23743735231161486 |
| Popis: | 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. |
| Databáze: | Directory of Open Access Journals |
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