End-of-life palliative home care for children with cancer: A qualitative study on parents’ experiences |
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| Authors: | Helena Hansson RN MSc PhD Maria Björk RN PhD Sheila Judge Santacroce RN CPNP FAANP PhD Mette Raunkiær RN PhD |
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| Institution: | 1. Department of Pediatric and Adolescent Medicine, Copenhagen University Hospital Rigshospitalet and Associate Professor at Copenhagen University, Copenhagen, Denmark;2. CHILD Research Group at the Department of Nursing Science, School of Health Sciences, Jönköping University, Jönköping, Sweden;3. Beerstecher-Blackwell Distinguished Scholar at School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA;4. Danish Knowledge Centre for Rehabilitation and Palliative Care (REHPA), Odense University Hospital, University of Southern Denmark, Nyborg, Denmark |
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| Abstract: | Background There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents’ experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. Methods The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. Results Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. Conclusion End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family. |
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| Keywords: | adolescent child home care services infant neoplasms palliative care parents preschool qualitative research terminal care |
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