Accepted author manuscript, 436 KB, PDF document
Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License
Final published version
Licence: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License
Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
}
TY - JOUR
T1 - A good death in the child with life shortening illness
T2 - A qualitative multiple-case study
AU - Chong, Poh Heng
AU - Walshe, Catherine
AU - Hughes, Sean
PY - 2021/12/1
Y1 - 2021/12/1
N2 - Background:Understanding what makes a ‘good death’ in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found meeting needs and managing control were critical. The influence of disease types, location of death and palliative care support remains unclear.Aim:Explore how a good death for children can occur in the real-world context and identify factors influencing it.Design:A qualitative multiple-case study. The case was defined as family and professional caregivers of children who died, stratified across disease categories (cancer or non-cancer) and palliative care contact. Data collection included (1) interviews, (2) artefacts, (3) clinical notes. Framework Analysis facilitated in-depth within and cross-case analysis.Setting/participants:Singapore health-care context. Respondents included bereaved parents, health and social care providers from hospital, and a community palliative care service.Results:Five cases were constituted, with eight parents and 14 professionals as respondents. Eight common themes were identified, sub-categorised under three domains and interpreted theoretically: (1) Antecedents: Letting go, Acknowledging the child, Closure (2) Determinants: Suffering, Control, Systems and processes (3) Attributes: Comfort, Dying not prolonged. These factors were consistent across all cases, regardless of individual diagnoses, place of care and palliative care access.Conclusions:Elements that universally influence a good death are revealed within an ecologically sound and holistic conceptual framework. The impact of attitudes among healthcare professionals, and service delivery at systems level highlighted in this study have immediate applications in practice and policy.
AB - Background:Understanding what makes a ‘good death’ in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found meeting needs and managing control were critical. The influence of disease types, location of death and palliative care support remains unclear.Aim:Explore how a good death for children can occur in the real-world context and identify factors influencing it.Design:A qualitative multiple-case study. The case was defined as family and professional caregivers of children who died, stratified across disease categories (cancer or non-cancer) and palliative care contact. Data collection included (1) interviews, (2) artefacts, (3) clinical notes. Framework Analysis facilitated in-depth within and cross-case analysis.Setting/participants:Singapore health-care context. Respondents included bereaved parents, health and social care providers from hospital, and a community palliative care service.Results:Five cases were constituted, with eight parents and 14 professionals as respondents. Eight common themes were identified, sub-categorised under three domains and interpreted theoretically: (1) Antecedents: Letting go, Acknowledging the child, Closure (2) Determinants: Suffering, Control, Systems and processes (3) Attributes: Comfort, Dying not prolonged. These factors were consistent across all cases, regardless of individual diagnoses, place of care and palliative care access.Conclusions:Elements that universally influence a good death are revealed within an ecologically sound and holistic conceptual framework. The impact of attitudes among healthcare professionals, and service delivery at systems level highlighted in this study have immediate applications in practice and policy.
KW - Child
KW - death
KW - terminal care
KW - palliative care
KW - caregivers
KW - Delivery of Health Care
KW - qualitative research
U2 - 10.1177/02692163211027700
DO - 10.1177/02692163211027700
M3 - Journal article
VL - 35
SP - 1878
EP - 1888
JO - Palliative Medicine
JF - Palliative Medicine
SN - 0269-2163
IS - 10
ER -