Laura K Sedig1, Jessica L Spruit1,2, Trisha K Paul1,3, Melissa K Cousino4, Kenneth Pituch5, Raymond Hutchinson1. 1. Division of Pediatric Hematology Oncology, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA. 2. Wayne State University College of Nursing, Detroit, MI, USA. 3. Department of Pediatrics, University of Minnesota, Minneapolis, MN, USA. 4. Division of Pediatric Psychology, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA. 5. Pediatric Palliative Care Program, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA.
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.
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.
Entities:
Keywords:
cancer; child; communication; end of life; focus groups; palliative care
Authors: Andrew Papworth; Julia Hackett; Bryony Beresford; Fliss Murtagh; Helen Weatherly; Sebastian Hinde; Andre Bedendo; Gabriella Walker; Jane Noyes; Sam Oddie; Chakrapani Vasudevan; Richard Feltbower; Bob Phillips; Richard Hain; Gayathri Subramanian; Andrew Haynes; Lorna K Fraser Journal: NIHR Open Res Date: 2022-05-13