Search results for ‘Subject term:"palliative care"’ Sort:
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Give me a break: how the UK Government can improve parental health and reduce health inequalities by allocating short break funding for seriously ill children in England at the Comprehensive Spending Review
- Authors:
- TOGETHER FOR SHORT LIVES, JULIA’S HOUSE CHILDREN’S HOSPICE
- Publisher:
- Together for Short Lives
- Publication year:
- 2020
- Pagination:
- 27
- Place of publication:
- London
This report evidences the positive impact that short breaks for respite have on families of children with life-limiting conditions. It estimates that 11 percent of parents of children who need respite delivered by children’s palliative care providers would experience significantly less stress and improved mental and physical health if they could access them. Key headlines include: reduced stress leads to better physical health among parents. Demand for GP services declines by 8 per cent as a result of an individual moving out of the most stressed category; reduced stress also leads to better mental health among carer parents – demand for mental health services falls by 49 per cent as an individual moves out of the most stressed category; short breaks are likely to have a positive impact on siblings and reduce the risk of parental relationships breaking up. Recommendations include a call for the government to deliver on the benefits of short breaks by filling the £434 million gap in funding for social care services for all disabled children in England and their families by creating an annual ring-fenced grant. (Edited publisher abstract)
Supporting the child and the family in paediatric palliative care
- Author:
- BROWN Erica
- Publisher:
- Jessica Kingsley
- Publication year:
- 2007
- Pagination:
- 304p., bibliog.
- Place of publication:
- London
The work of the Acorns Children’s Hospices, their care and research, forms the basis for this book which aims to provide an overview of good practice in caring for terminally ill children, young people and their families. It provides guidance on key issues including symptom management and pain relief; cultural, religious and spiritual aspects of care; and the role of education for limited-life children. The writers also address the importance of individual needs, including emotional, social and cognitive support at different stages of the illness. They consider how parents and professionals can respond to children’s own questions about death, making choices during distressing periods and the impact of life limiting illness on the whole family, including grandparents and siblings. The book is aimed at nurses, paediatricians, hospice care staff and bereavement counsellors, in fact anyone caring for life-limited children.
Talk about change
- Authors:
- THE KOSH, (Producer)
- Publisher:
- The Kosh
- Publication year:
- 2008
- Pagination:
- (35 mins.), DVD, booklet
- Place of publication:
- London
Film-makers the Kosh and UK children’s palliative care charity ACT have launched a new groundbreaking DVD resource called Talk About Change made by young people with life-limiting conditions. Talk About Change, funded by BBC Children in Need, aims to show the reality of making the transition from childhood to adulthood knowing that you have a life-limiting condition. This film is about giving young people with a life-limiting condition a voice. They have a right to be heard. They only ask for things that most people take for granted, independence, relationships and the opportunity to train and get a job. Young people also explore how the impact of their health condition or disability has changed as they get older, and highlight a lack of dedicated support services as they approach adulthood.
Providing a children's palliative care service in the community through fixed-term grants: the staff perspective
- Authors:
- BERINGER A. J., EATON N. M., JONES G. L.
- Journal article citation:
- Child: Care, Health and Development, 33(5), September 2007, pp.619-624.
- Publisher:
- Wiley
Children's palliative care services have recently been awarded fixed-term grants, aimed at improving the provision of care for children with life-limiting conditions in the community. We report findings of a qualitative study to investigate the experience of a cohort of community children's nurses from teams involved in setting up or extending community-based children's palliative care services. The purpose of the study was to identify factors that affect service delivery, from the staff perspective, and to suggest ways of promoting their sustainable development. Semi-structured telephone interviews were conducted with 21 nurses from 12 different teams providing palliative care for children at home and in hospices. Participants were questioned about the services they provided and their own roles in that provision. nvivo qualitative data analysis software was used to explore themes arising from the transcribed recorded interviews. Key findings were the importance of physical location in facilitating multidisciplinary communication, the importance of defining role boundaries between existing and new providers of children's palliative care, and the potentially detrimental impact of insecure funding on referral patterns and recruitment to posts. Staff named the opportunity to offer direct ‘hands-on’ care to families, access to work-based support and networking opportunities as important factors in helping them cope with the stresses involved in managing finite resources and the emotional challenges of their work. The maintenance of a mixed caseload with a significant proportion of direct care, provision of ongoing support and clearly defined roles are recommended as means of bolstering the ability of staff to develop their services. The deliberate locating of services to enhance communication between staff and guidance on the preparation of funding applications may further contribute to the sustainability of these services.
The patient's journey: palliative care - a parent's view
- Authors:
- DARNILL Stephanie, GAMAGE Bernadette
- Journal article citation:
- British Medical Journal, 24.06.06, 2006, pp.1494-1495.
- Publisher:
- British Medical Association
The first author, a parent, gives a personal account of her sons death from cancer and the issues she encountered arising from her child’s specific needs and the palliative care provision available. The second author briefly describes the work of Lifeforces team which aims to ensure support and home care for children with life threatening or life limiting illnesses.
Palliative care: the management of far advanced illness
- Editor:
- DOYLE Derek
- Publisher:
- Croom Helm
- Publication year:
- 1983
- Pagination:
- vii,536p.,tables.
- Place of publication:
- London
The long shadow: collateral impact and finding resilience amidst a global pandemic pediatric palliative care social work during COVID-19
- Authors:
- JONAS Danielle Faye, et al
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 17(2-3), 2021, pp.218-236.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
This manuscript illuminates the nuanced ways in which the COVID-19 pandemic has impacted the pediatric palliative care social work role and clinical care in caring for children with life-limiting illnesses and their families throughout the country. The authors discuss memorable moments, logistical impacts, telehealth usage, decision-making experiences, end of life care, bereavement practices, specialized interventions, and self-care. The paper concludes with lessons learned and practical recommendations for the future. (Edited publisher abstract)
Children’s best interests and parents’ views: challenges from medical law
- Author:
- SORBIE Annie
- Journal article citation:
- Journal of Social Welfare and Family Law, 43(1), 2021, pp.23-41.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
In many domains there are tensions between the rights and interests of children, parents and the state. In medical law this has come under scrutiny in England and Wales when considering how parental choice can be accommodated in best interests decision-making in relation to the care of critically ill children. This follows a series of high-profile court cases and, in February 2020, the second reading of the Access to Palliative Care and Treatment of Children Bill in the House of Lords. Through a novel synthesis of source material I examine two key proposals in this Bill in relation to the treatment of children with a life-limiting illness: (i) that courts should assume that any medical treatment proposed by those with parental responsibility is in the child’s best interests unless it poses a disproportionate risk of significant harm; and (ii) that mediation between parents and health service providers should be mandatory. This analysis elucidates how the Bill, as currently drafted, would modify the ordinary best interests approach in relation to children with life-limiting illnesses both substantively and procedurally. Further, by widening the lens – from the Bill’s text to its context – I illustrate challenges inherent in translating the law into meaningful action on the ground, thus shifting the focus from (legal) text to the broader context. (Edited publisher abstract)
The arc of generational care: a case series considering Grandparent roles and care needs in pediatric palliative care
- Authors:
- KUHN Emily, et al
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 15(2-3), 2019, pp.99-110.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
Children receiving palliative care services are held within the context of a family and often within multiple-generational arms. The purpose of this case series paper is to recognise grandparents’ roles in their family system from a personal, cultural, and anthropological perspective; to explore emotions and experiences as applies to grandparents of children receiving palliative care; and to provide tangible insight into caring well for families across the generational arc. (Edited publisher abstract)
Parental decision-making on utilisation of out-of-home respite in children's palliative care: findings of qualitative case study research - a proposed new model
- Authors:
- LING J., et al
- Journal article citation:
- Child: Care, Health and Development, 42(1), 2016, pp.51-59.
- Publisher:
- Wiley
Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the child's age, diagnosis, geographical location and the family's capacity to meet their child's care needs. A proposed model for out-of-home respite has been developed based on the findings of qualitative case study research. (Publisher abstract)