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 profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
cancer; children; health professionals; life-limiting illness; paediatric palliative care; parents; support needs
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 SM; Gill FJ; Phillips MB; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon ME
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 support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review
cancer; children; health professionals; life-limiting illness; non-cancer; Paediatric palliative care; parents; support needs
BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs. AIM: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. DESIGN: A scoping review. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). RESULTS: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. CONCLUSION: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.
Gill FJ; Hashem Z; Stegmann R; Aoun SM
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/10.1177/0269216320967593" target="_blank" rel="noreferrer noopener">10.1177/0269216320967593</a>
"We Feel Like We Are in the Dark": A Population Level Qualitative Study of the Training and Support Needs of Hospice Nurses Caring for Children and Families in the Community (RP417)
qualitative study; training; support needs; hospice nurses
Objectives: * Describe the evidence from a growing body of literature demonstrating the dearth of pediatric-focused training and resources for community hospice nurses, as well as the lack of comfort of community hospice nurses with providing pediatric care. * Characterize the pediatric-specific training and support needs of hospice nurses who provide care to children and families in the community. * Describe the innovative ideas proposed by study participants for development of pediatric-specific resources and training opportunities for community hospice nurses. Importance: Approximately 500,000 children suffer from serious illness annually, with 50,000 children dying each year. Many of these children and families are eligible for provision of community-based hospice care, yet few organizations offer formal pediatric services. Recent population level data demonstrate that hospice nurses lack training, experience, and comfort in provision of care to children in the community; however, the specific educational preferences and supportive needs of hospice nurses is not well understood. Objective(s): To investigate and describe the pediatric-specific training and support needs of hospice nurses providing care to children and families in the community. Method(s): From a population-level cohort of 551 hospice nurses who completed a comprehensive quantitative survey, an exploratory cohort of 40 hospice nurses were selected using purposive sampling to stratify participants into sub-cohorts based on prior self-reported levels of comfort with pediatric hospice provision. Semi-structured interviews were conducted, with subsequent inductive codebook development. Constant comparative analysis was performed across transcripts using MAXQDA software. Result(s): The majority of hospice nurses described insufficient training to care for children with serious illness. Nurses imagine an ideal training experience to involve in-person learning with prioritization of specific topics, including symptom management, medications/dosing, pediatric-specific equipment, concurrent care, anticipatory guidance on disease trajectories and end of life, supporting families, and staff resilience. Barriers to realizing training experiences include lack of awareness of available resources, training opportunities, and mentorship/networking across the pediatric palliative care landscape, as well as stigma against pediatric hospice and palliative care. Conclusion(s): Community hospice nurses express an urgent need for improvements in pediatric-specific resources and training opportunities. Importantly, they offer robust visions for improving training paradigms and available resources. Impact: These data offer opportunities for collaborative development and investigation of educational programs and policies to improve the provision of community-based pediatric hospice for children, families, and nurses. Copyright © 2020
Porter A; Kiefer A; Gattas M; Baker J; Kaye E
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2020.04.085" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.085</a>