Volunteer Activity In Specialist Paediatric Palliative Care: A National Survey
Statistics And Numerical Data; Adolescent; Adult; Cross-sectional Study; England; Female; Health Care Survey; Home Care; Hospice; Hospice Care; Hospital Volunteer; Human; Internet; Male; Organization And Management; Palliative Therapy; Pediatrics; Procedures; Questionnaire; Specialization; Young Adult
OBJECTIVE: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD: Cross-sectional survey using a web-based questionnaire. SETTING: UK specialist paediatric palliative care services. PARTICIPANTS: Volunteer managers/coordinators from all UK hospice providers (n=37) and one National Health Service palliative care service involving volunteers (covering 53 services in total). MAIN OUTCOMES: Service characteristics, number of volunteers, extent of volunteer involvement in care services, use of volunteers' professional skills and volunteer activities by setting. RESULTS: A total of 21 providers covering 31 hospices/palliative care services responded (30 evaluable responses). Referral age limit was 16-19 years in 23 services and 23-35 years in seven services; three services were Hospice at Home or home care only. Per service, there was a median of 25 volunteers with direct patient/family contact. Services providing only home care involved fewer volunteers than hospices with beds. Volunteers entirely ran some services, notably complementary therapy and pastoral/faith-based care. Complementary therapists, school teachers and spiritual care workers most commonly volunteered their professional skills. Volunteers undertook a wide range of activities including emotional support and recreational activities with children and siblings. CONCLUSIONS: This is the most detailed national survey of volunteer activity in palliative care services for children and young people to date. It highlights the range and depth of volunteers' contribution to specialist paediatric palliative care services and will help to provide a basis for future research, which could inform expansion of volunteers' roles.
Burbeck R; Low J; Sampson E L; Scott R; Bravery R; Candy B
Bmj Supportive & Palliative Care
2015
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).
10.1136/bmjspcare-2012-000355
Perinatal palliative care: a developing specialty
Humans; infant; Palliative Care; decision making; Organizational Case Studies; Perinatology; Specialization; Argentina; Palliative Care; Newborn
Neonates and babies have the highest death rate in the paediatric population. Perinatal palliative care aims to enhance the quality of life of babies with a life-limiting condition and their families. However, very little data is available on perinatal palliative care and its impact on babies and families along their journey. End-of-life decision-making for babies with an adverse prognosis also remains ethically challenging. This paper provides an overview of perinatal palliative care and its development, and then considers some of the issues affecting this field by looking at single national, institutional, and patient case studies.
2014-03
Kiman R; Doumic L
International Journal Of Palliative Nursing
2014
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).
Journal Article
<a href="http://doi.org/10.12968/ijpn.2014.20.3.143" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.3.143</a>
Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis
Hospitalization; Humans; retrospective studies; Palliative Care; patient care team; Cohort Studies; Hospital Mortality; Community Health Services; Specialization; Emergency Service; Hospital
OBJECTIVE: To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients' homes. DESIGN: Pooled analysis of a retrospective cohort study. SETTING: Ontario, Canada. PARTICIPANTS: 3109 patients who received care from specialist palliative care teams in 2009-11 (exposed) matched by propensity score to 3109 patients who received usual care (unexposed). INTERVENTION: The palliative care teams studied served different geographies and varied in team composition and size but had the same core team members and role: a core group of palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes. The teams' role was to manage symptoms, provide education and care, coordinate services, and be available without interruption regardless of time or day. MAIN OUTCOME MEASURES: Patients (a) being in hospital in the last two weeks of life; (b) having an emergency department visit in the last two weeks of life; or (c) dying in hospital. RESULTS: In both exposed and unexposed groups, about 80% had cancer and 78% received end of life homecare services for the same average duration. Across all palliative care teams, 970 (31.2%) of the exposed group were in hospital and 896 (28.9%) had an emergency department visit in the last two weeks of life respectively, compared with 1219 (39.3%) and 1070 (34.5%) of the unexposed group (P<0.001). The pooled relative risks of being in hospital and having an emergency department visit in late life comparing exposed versus unexposed were 0.68 (95% confidence interval 0.61 to 0.76) and 0.77 (0.69 to 0.86) respectively. Fewer exposed than unexposed patients died in hospital (503 (16.2%) v 887 (28.6%), P<0.001), and the pooled relative risk of dying in hospital was 0.46 (0.40 to 0.52). CONCLUSIONS: Community based specialist palliative care teams, despite variation in team composition and geographies, were effective at reducing acute care use and hospital deaths at the end of life.
2014
Seow H; Brazil K; Sussman J; Pereira JL; Marshall D; Austin PC; Husain A; Rangrej J; Barbera L
Bmj (clinical Research Ed.)
2014
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).
Journal Article
<a href="http://doi.org/10.1136/bmj.g3496" target="_blank" rel="noreferrer">10.1136/bmj.g3496</a>
Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study
Terminal Care; child; terminal care; article; female; human; male; palliative therapy; clinical article; education; child health care; awareness; qualitative research; funding; human experiment; semi structured interview; thematic analysis; organization; specialization
Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. Method(s): Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. Result(s): Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. Conclusion(s): Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.Copyright © 2023, BioMed Central Ltd., part of Springer Nature.
Papworth A; Hackett J; Beresford B; Murtagh F; Weatherly H; Hinde S; Bedendo A; Walker G; Noyes J; Oddie S; Vasudevan C; Feltbower RG; Phillips B; Hain R; Subramanian G; Haynes A; Fraser LK
BMC Palliative Care
2023
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/10.1186/s12904-023-01238-w" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01238-w</a>