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- Title
Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study.
- Authors
Sedig, Laura K.; Spruit, Jessica L.; Paul, Trisha K.; Cousino, Melissa K.; Pituch, Kenneth; Hutchinson, Raymond
- Abstract
Background: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. Methods: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. Results: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. Conclusion: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
- Subjects
MIDWEST (U.S.); ACADEMIC medical centers; CONTROL (Psychology); BEREAVEMENT; CANCER patient medical care; COMMUNICATION; FATHERS; FOCUS groups; HEALTH facilities; HOSPICE care; MEDICAL care; MEDICAL personnel; MEDICAL records; MOTHERS; PALLIATIVE treatment; PEDIATRICS; RESEARCH funding; QUALITATIVE research; DATA analysis; THEMATIC analysis; PARENT attitudes; PATIENTS' families; ACQUISITION of data methodology; INTRACLASS correlation
- Publication
American Journal of Hospice & Palliative Medicine, 2020, Vol 37, Issue 6, p424
- ISSN
1049-9091
- Publication type
Article
- DOI
10.1177/1049909119895496