Families’ Perspectives of Quality of Life in Pediatric Palliative Care Patients
Bibliographic Data
| ID | 15717902 |
|---|---|
| Authors | Erin Gaab (University of California, Merced, corresponding author) |
| Year | 2015 |
| Volume | 2 |
| Issue | 1 |
| Pages | 131-145 |
| Publication date | 2015-03-23 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Children (JOURNAL) |
| Journal identifiers | ISSN: 2227-9067 • E-ISSN: 2227-9067 |
| Publisher | Multidisciplinary Digital Publishing Institute (PUBLISHER • CH) |
| DOI | 10.3390/children2010131 |
| PMID | 27417355 |
| OpenAlex | W2029406439 |
| Language | EN |
| Citations received | 1 |
| References cited | 12 |
Medical and academic institutions began prioritizing Pediatric Palliative Care (PPC) less than two decades ago. Although policies and institutions claim to improve the Quality of Life (QoL) of PPC patients and their families, family-defined QoL remains ambiguous. This research investigates the definitions of QoL for PPC patients according to their primary caregivers. We conducted qualitative, semi-structured focus groups of the primary caregivers of PPC patients. The transcripts were analysed for themes using inductive thematic analysis. Participants included primary caregivers of children currently receiving PPC from a healthcare institution in California. We identified several factors that primary caregivers considered components of QoL for their children. The ability to communicate and adapt or be accepted underpinned the concept of QoL for families. QoL for PPC patients was defined by primary caregivers as being able to communicate in a respectful, controlled, physically- and socially-comfortable environment. Attempts to improve QoL should focus not only on pain and symptom control, but also on enhancing opportunities for children to communicate and maintain a sense of dignity
Dignity · Focus group · Palliative care · Qualitative research · Quality (philosophy · Quality of life (healthcare · Sociology · Thematic analysis · Childhood Cancer Survivors' Quality of Life · Family and Disability Support Research · Medicine · Nursing · Palliative Care and End-of-Life Issues · Psychology
| Citations per year | 0.33 |
|---|---|
| Citation span | 2023 - 2023 (1) |
| Highly cited | No |