The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
children; cancer; life-limiting illness; non-cancer; parents; paediatric palliative care; article.; interest with respect to the research; support needs; and/or publication of this; authorship; health professionals
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. METHODS: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study. RESULTS: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. CONCLUSION: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.
Aoun S M; Gill F J; Phillips M B; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon M E
Palliative Care and Social Practice
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/10.1177/2632352420958000" target="_blank" rel="noreferrer noopener">10.1177/2632352420958000</a>
The pervasive relevance of COVID-19 within routine paediatric palliative care consultations during the pandemic: A conversation analytic study
and/or publication of this; article.; authorship; child; communication; Covid-19; of interest with respect to the research; Palliative care; pandemics
BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to study health communication during pandemic times. However, it is unknown how communication within consultations might change during pandemics. AIM: This study, a sub-study of a larger project, aimed to examine real-world instances of communication in paediatric palliative care consultations prior to and during the COVID-19 pandemic to understand how clinicians and families talk about the pandemic. DESIGN: Paediatric palliative care consultations prior to, during, and immediately following the initial peak of COVID-19 cases in Australia were video recorded and analysed using Conversation Analysis methods. SETTING/PARTICIPANTS: Twenty-five paediatric palliative care consultations (including face-to-face outpatient, telehealth outpatient and inpatient consultations) were video recorded within a public children's hospital in Australia. Participants included 14 health professionals, 15 child patients, 23 adult family members and 5 child siblings. RESULTS: There was a pervasive relevance of both serious and non-serious talk about COVID-19 within the consultations recorded during the pandemic. Topics typical of a standard paediatric palliative care consultation often led to discussion of the pandemic. Clinicians (55%) and parents (45%) initiated talk about the pandemic. CONCLUSIONS: Clinicians should not be surprised by the pervasiveness of COVID-19 or other pandemic talk within standard paediatric palliative care consultations. This awareness will enable clinicians to flexibly address family needs and concerns about pandemic-related matters that may impact health and wellbeing.
Ekberg K; Weinglass L; Ekberg S; Danby S; Herbert A
Palliative Medicine
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/10.1177/0269216320950089" target="_blank" rel="noreferrer noopener">10.1177/0269216320950089</a>
Predictors of Location of Death for Children with Cancer Enrolled on a Palliative Care Service
article.; Death; End of life; Female; Humans; Location of death; Male; Neoplasms/*mortality; palliative care; Palliative Care/*methods; palliative oncology; Pediatric oncology
BACKGROUND: In the U.S., more children die from cancer than from any other disease, and more than one third die in the hospital setting. These data have been replicated even in subpopulations of children with cancer enrolled on a palliative care service. Children with cancer who die in high-acuity inpatient settings often experience suffering at the end of life, with increased psychosocial morbidities seen in their bereaved parents. Strategies to preemptively identify children with cancer who are more likely to die in high-acuity inpatient settings have not been explored. MATERIALS AND METHODS: A standardized tool was used to gather demographic, disease, treatment, and end-of-life variables for 321 pediatric palliative oncology (PPO) patients treated at an academic pediatric cancer center who died between 2011 and 2015. Multinomial logistic regression was used to predict patient subgroups at increased risk for pediatric intensive care unit (PICU) death. RESULTS: Higher odds of dying in the PICU were found in patients with Hispanic ethnicity (odds ratio [OR], 4.02; p = .002), hematologic malignancy (OR, 7.42; p < .0001), history of hematopoietic stem cell transplant (OR, 4.52; p < .0001), total number of PICU hospitalizations (OR, 1.98; p < .0001), receipt of cancer-directed therapy during the last month of life (OR, 2.96; p = .002), and palliative care involvement occurring less than 30 days before death (OR, 4.7; p < .0001). Conversely, lower odds of dying in the PICU were found in patients with hospice involvement (OR, 0.02; p < .0001) and documentation of advance directives at the time of death (OR, 0.37; p = .033). CONCLUSION: Certain variables may predict PICU death for PPO patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families. IMPLICATIONS FOR PRACTICE: Children with cancer who die in high-acuity inpatient settings often experience a high burden of intensive therapy at the end of life. Strategies to identify patients at higher risk of dying in the pediatric intensive care unit (PICU) have not been explored previously. This study finds that certain variables may predict PICU death for pediatric palliative oncology patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families.
Kaye E C; DeMarsh S; Gushue C A; Jerkins J; Sykes A; Lu Z; Snaman J M; Blazin L J; Johnson L M; Levine D R; Morrison R R; Baker J N
Oncologist
2018
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/10.1634/theoncologist.2017-0650" target="_blank" rel="noreferrer noopener">10.1634/theoncologist.2017-0650</a>