Preferred place of death in paediatric, teenage and young adult haemato-oncology patients: a retrospective review
home care; supportive care; hospice care; cancer; paediatrics; end-of-life care
OBJECTIVES: Identifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to determine where children/young people with cancer want to die and whether their preferred place of death is achieved. METHOD(S): Clinical/demographic details, including preferred and actual places of death, were recorded for 121 patients who died between 2012 and 2016 at a tertiary haematology-oncology centre. A logistic regression model was used to determine the odds of achieving the preferred place of death in patient subgroups. RESULT(S): 74 (61%) patients had a documented discussion regarding place of death preference. Where a preferred location was identified, 72% achieved it. All patients who wanted to die in the hospital (n=17) or a hospice (n=9) did, but only 58% of patients who wanted to die at home (n=40) achieved this. Of the 42% (n=17) who wanted to die at home but did not, 59% of these were due to rapid deterioration in clinical status shortly after the discussion. Having supportive treatment in the last month of life was associated with increased odds of achieving the preferred place of death versus those who were undergoing chemotherapy/radiotherapy (OR 3.19, 95%CI 1.04 to 9.80, p value=0.04). CONCLUSION(S): Where hospice/hospital was chosen as the preferred place of death, this was always achieved. Achieving home as the preferred place of death was more challenging and frequently prevented by rapid clinical deterioration. Clinicians should be encouraged to address end-of-life preferences at an early stage, with information provided adequately. Further research should explore implications of these findings on both end-of-life experience and overall service provision. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
Stilwell P; Bhatt A; Mehta K; Carter B; Bisset M; Soanes L; Shankar A
BMJ supportive & palliative care
2020
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).
<a href="http://doi.org/10.1136/bmjspcare-2019-002005" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-002005</a>
Place bonding' in children's hospice care: a qualitative study
hospice; parent experiences; parent perspectives; parental experience; parental perspectives; pediatrics; place bonding
BACKGROUND: Limited knowledge exists of parents' perceptions and experiences of children's hospices and how these contribute to the varied access and uptake of services. AIM: This study aimed to explore parents' perspectives and experiences of a hospice, to understand the barriers and/or facilitators to accessing a hospice, and what characteristics parents wanted from hospice provision. METHOD(S): A two-phase qualitative study underpinned by a constructivist grounded theory methodology was employed. Phase 1 used focus groups to collect data from parents of children already accessing the hospice (n=24). Phase 2 used in-depth semistructured interviews with parents of children who did not use the hospice (n=7) and with parents who had previous experience of using a hospice (n=7). RESULT(S): A grounded theory of place bonding was developed which illustrates the cognitive journey taken by parents of children with life-limiting conditions considering/receiving hospice care for their child. CONCLUSION(S): Finding a place where they belonged and felt at 'home' made the decision to accept help in caring for their child with a life-limiting condition more acceptable. The theory of place bonding offers children's hospices a new perspective from which to view how parents access, accept and build relationships at the hospice. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
Dunbar H; Carter B; Brown J
BMJ Supportive & Palliative Care
2020
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).
<a href="http://doi.org/10.1136/bmjspcare-2018-001543" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001543</a>
Experiencing place identity and place belongingness at a children's hospice: Parents' perspectives
Children's hospice; parent perspective; place belongingness; place identity
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents' experiences of place identity and place belongingness at a children's hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children's hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents' views of the identity of the hospice change and how the hospice becomes a place where parents experience a sense of belongingness.
Dunbar H; Carter B
Journal of Child Health Care
2020
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).
<a href="http://doi.org/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">10.1177/1367493520915134</a>