Development of a research-based classification of approaches to paediatric palliative medicine service provision within children's and young adults' hospices: A mixed methods study
Children; Classification; Hospices; Pediatric palliative care; Young adults
Background: Globally, pioneers in children's palliative care influenced this speciality's development through individual initiatives leading to diverse models of care. Children's and young adults' hospices have now been established around the world. However, service provision varies widely leading to inequities both within countries and internationally. Aim(s): To describe and classify existing approaches to paediatric palliative medicine in children's and young adults' hospices across the UK. Design(s): A mixed methods study conducted by telephone interview. Setting/participants: Thirty-one leaders of children's hospice care, representing 28 services, 66% of UK children's and young adults' hospice organisations. Result(s): A geographic-specialist classification was developed through integration of findings, enabling hospices to be classified as Regional specialist, Regional non-specialist, Local specialist and Local non-specialist. Both qualitative and quantitative data demonstrated diversity and inequity in paediatric palliative medicine provision. Of 159 doctors (63.5% of whom were general practitioners) working in participating hospices only 27.5% had specialist training in paediatric palliative medicine. The majority of participating hospices (67.9%) did not have involvement from a paediatric palliative medicine consultant. Conclusion(s): Internationally, the integration of specialist children's palliative care teams with existing services is a current challenge. Despite differing approaches to children's palliative care world-wide, models of care which facilitate integration of specialist children's palliative care could benefit a range of countries and contexts. The geographic-specialist classification could be used to inform recommendations for a networked approach to paediatric palliative medicine within children's and young adults' hospices to promote equity for children with life-limiting and life-threatening conditions. Copyright © The Author(s) 2022.
Frost J; Hunt J; Hewitt-Taylor J; Lapwood S
Palliative Medicine
2022
<a href="http://doi.org/10.1177/02692163221082423" target="_blank" rel="noreferrer noopener">10.1177/02692163221082423</a>
Palliative care for children with cancer--home, hospital, or hospice?
Child; Humans; Palliative Care; Terminal Care; Home Nursing; Non-U.S. Gov't; Research Support; patient care team; Neoplasms/therapy; location of death
1990
Goldman A; Beardsmore S; Hunt J
Archives Of Disease In Childhood
1990
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/adc.65.6.641" target="_blank" rel="noreferrer">10.1136/adc.65.6.641</a>
How holistic nursing can enhance the quality of life of children with cystic fibrosis
Adolescent; Child Health; Cystic Fibrosis; Cystic Fibrosis/ Nursing/psychology; Family/psychology; Female; Holistic Nursing/ Methods; Humans; Life-limiting Illness; Paediatrics; Quality Of Life; Respiratory System; Siblings/psychology; Well-being
Cystic fibrosis (CF) is one of the most common life-limiting genetic conditions. Ellen Bolton (not her real name) is a teenager with one of the rarer presentations of CF. This case study explores the experiences of Ellen and her family. It discusses the effects of CF on the patient and her family, and how it affects their quality of life (QoL) and well-being.
Tointon K; Hunt J
Nursing Children And Young People
2016
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://dx.doi.org/10.7748/ncyp.2016.e753" target="_blank" rel="noreferrer"><span>http://dx.doi.org/</span><span>10.7748</span><span>/</span><span>ncyp</span><span>.</span><span>2016</span><span>.</span><span>e753</span></a>