Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study

Title

Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study

Creator

Sedig LK; Spruit JL; Paul TK; Cousino MK; Pituch K; Hutchinson R

Publisher

American Journal of Hospice & Palliative Care

Date

2020

Subject

child; Adult; Female; Humans; Male; Middle Aged; Quality of Life; Communication; Time Factors; Professional-Family Relations; palliative care; Continuity of Patient Care/organization & administration; Palliative Care/organization & administration/psychology; Parents/psychology; Focus Groups; cancer; end of life; Hospice Care/organization & administration/psychology; communication; Bereavement; focus groups; Terminal Care/organization & administration/psychology

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

March 2021 List

Collection

Citation

Sedig LK; Spruit JL; Paul TK; Cousino MK; Pituch K; Hutchinson R, “Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study,” Pediatric Palliative Care Library, accessed July 31, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17489.

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