Paediatric palliative care: not so different from adult palliative care?

Mellor, Charlotte; Hain, Richard

doi:10.12968/hmed.2010.71.1.45971

Cited by 10 publications

(9 citation statements)

References 7 publications

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“…As we considered how to modify the program, we started by focusing on the differences between adult and pediatric patients at the end of life, knowing that these differences would need to be reflected in our new curriculum. For example, while oncology accounts for the vast majority of adult referrals, pediatric palliative care is made up of a variety of disease entities including: complications of prematurity, chromosomal abnormalities, genetic and metabolic disorders, progressive neurological conditions, and respiratory disease (10)(11)(12)(13)(14). Of the cancer patients referred, the types of malignancies and their disease trajectories are often different from those seen in adults (14)(15)(16)(17).…”

Section: Modifying the Adult Curriculummentioning

confidence: 99%

“…594-614). Several other differences between pediatric and adult palliative care include: pediatric services, the need for supportive development, nutritional and feeding issues, care needs, different family structures, changing understanding of death, the integration of palliative with curative approaches, and differences in legal and ethical decision-making (13,14,17,19).…”

Section: Modifying the Adult Curriculummentioning

confidence: 99%

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Designing A Canadian Pediatric Palliative Care Residency Program

2011

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Section: Modifying the Adult Curriculummentioning

confidence: 99%

Section: Modifying the Adult Curriculummentioning

confidence: 99%

Designing A Canadian Pediatric Palliative Care Residency Program

2011

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“…Although these advances are long-awaited, improved survival means a growing number of young adults are moving from children's to adult services. This makes the existence of programmes for effective transition increasingly important [8]. Transition is defined as the 'purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-oriented health care systems' [9].…”

Section: Introductionmentioning

confidence: 99%

A cross-sectional survey of services for young adults with life-limiting conditions making the transition from children’s to adult services in Ireland

Kerr

Price²,

O’Halloran

2019

Ir J Med Sci

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Background Increasing numbers of young adults with life-limiting conditions are living into adulthood and consequently making the transition from children's to adult services. A poorly planned transition is associated with adverse outcomes such as nonadherence to treatment and loss to follow-up, together with negative social and emotional outcomes. However, there is little descriptive data on how organisations are currently managing transition.Aim To obtain an overview of organisational approaches to transition on the island of Ireland, and to explore important organisational factors that may influence the effectiveness of the process. Methods A cross-sectional questionnaire survey. One of the four Health Services Executive areas in the Republic of Ireland and the whole of Northern Ireland. Participants were service providers in statutory and non-statutory organisations providing transition services to young adults with life-limiting conditions. Results The survey was distributed to 55 organisations. The overall response rate was 29/55 (53%). The approach to transition most commonly used focused on interagency communication and collaboration. Key factors in an effective transition were reported as: early commencement; effective communication between the young adult, their family, and services; the availability of appropriate adult services; and effective preparation through collaboration with the young adult and their family. However, implementation of these processes was inconsistent.Conclusions The findings demonstrate that caring for young adults with life-limiting conditions presents a considerable challenge to organisations and that transition from children's to adult services is an important part of this challenge.

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“…Paediatric palliative care has distinct differences from adult palliative care which generally supports the end of life phase of care [ 14 ], and from paediatric oncology which although similarly supports children and their families sometimes for many years including during end of life [ 15 ], has a pathway that is focused primarily on remission and cure [ 16 ]. In paediatric palliative care the key focus is on palliation, including medical, physical, emotional, spiritual and social care, as well as providing continuous care at the end of life and help in bereavement [ 17 ].…”

Section: Introductionmentioning

confidence: 99%

Exploring the rewards and challenges of paediatric palliative care work – a qualitative study of a multi-disciplinary children’s hospice care team

Taylor

Aldridge

2017

BMC Palliat Care

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BackgroundChildren’s hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is known about the role of children’s hospice staff and the factors that may impact on their wellbeing at work. This study explored the rewards and challenges of working in a children’s hospice with an aim to identify staff support and development needs.MethodsWe conducted an exploratory, qualitative study involving thematic analysis of semi-structured interviews with 34 staff and three focus groups with 17 staff working in a multi-disciplinary care team in a UK children’s hospice.ResultsParticipants identified rewards and challenges related to the direct work of caring for children and their families; team dynamics and organisational structures; and individual resilience and job motivation. Participants described the work as emotionally intensive and multi-faceted; ‘getting it right’ for children was identified as a strong motivator and reward, but also a potential stressor as staff strived to maintain high standards of personalised and emotional care. Other factors were identified as both a reward and stressor, including team functioning, the allocation of work, meeting parent expectations, and the hospice environment. Many participants identified training needs for different aspects of the role to help them feel more confident and competent. Participants also expressed concerns about work-related stress, both for themselves and for colleagues, but felt unable to discuss this at work. Informal support from colleagues and group clinical reflection were identified as primary resources to reflect on and learn from work and for emotional support. However, opportunities for this were limited.ConclusionsProviding regular, structured, and dedicated clinical reflection provides a mechanism through which children’s hospice staff can come together for support and learning, and demonstrates an organisational commitment to staff wellbeing and development. Being aware of children’s hospice specific rewards and challenges can help to ensure that staff feel supported and competent in their role. Breaking down barriers to discussing work-related stress and enhancing awareness about early signs of burnout is also important.

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Paediatric palliative care: not so different from adult palliative care?

Cited by 10 publications

References 7 publications

Designing A Canadian Pediatric Palliative Care Residency Program

Designing A Canadian Pediatric Palliative Care Residency Program

A cross-sectional survey of services for young adults with life-limiting conditions making the transition from children’s to adult services in Ireland

Exploring the rewards and challenges of paediatric palliative care work – a qualitative study of a multi-disciplinary children’s hospice care team

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