Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning
Humans; Adolescent; Child; Female; Male; Middle Aged; palliative care; Attitude to Death; Preschool; Adult; Attitude to Health; Spirituality; Practice Guidelines as Topic; Pediatrics/*standards; Advance Care Planning/*standards; United Kingdom; Family/*psychology; paediatric practice; Palliative Care/*psychology/*standards
In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of profound importance to children and their families. We overlook their search for wholeness in the absence of cure and fall short of offering truly holistic care. This paper explores how developments in advance care planning and related documentation are addressing these issues. Since children's spirituality is elusive and rarely explored in practice, it aims to clarify our understanding of it with a variety of examples and contains suggestions for hearing the voice of the child amid the needs of parents and professionals.
Clayton M; Aldridge J
Archives of Disease in Childhood - Education and Practice
2019
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/10.1136/archdischild-2017-314525" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-314525</a>
Evaluation Of The Need For A Paediatric Palliative Care Service In The West Of Scotland
Palliative Care; Paediatric Staffing; Health Service; Paediatric Practice
Abstract
Aims To assess how many children access palliative care services across NHS Greater Glasgow, their specific needs, if these are addressed by current services, and whether a dedicated palliative care service is required.
Methods A semi-structured survey, containing 22 questions, was sent by email, to all paediatric consultants, associate specialists and speciality doctors in NHS Greater Glasgow between October 2014–April 2015 (107 recipients). Data were analysed using a mixed methods approach; thematic analysis was performed on free text responses.
Results 76 recipients responded to the survey of whom 95% were consultants, and 83% worked in a tertiary children’s hospital. 54% stated that palliative care comprised < 5% of their workload; compared to 8% stated it was >50%. 69% felt they lacked time, and 67% the resources, to sufficiently address their patients’ palliative needs. The most common palliative needs of patients were identified as immediate end of life care (91%), family support (84%), nutritional support (81%), and social /emotional (83%) support care needs, whilst spiritual needs (49%) were less commonly identified. Dominant themes emerging as barriers to palliative care provision included: failure of identification of a child’s palliative care needs by their primary speciality, lack of current services particularly in relation to community nursing support, difficulties accessing current palliative care services (including how to refer patients and what services are available), and no identified lead clinician for palliative care. 55% of respondents commented on positive interactions with the local children’s hospice, including support for end of life care and sibling support; and the role of specialist nurses and the family support service. 88% of participants expressed a desire for a dedicated children’s palliative care service. Participants were asked to comment on the services they would expect. Eight themes were identified including, the need for on-call clinical support, coordination of services, and improvement of bereavement services.
Conclusions Paediatricians from a range of specialties lack the time and resources to provide the specialist palliative care children need. There is a significant need in Greater Glasgow for the development of a dedicated paediatric palliative care service.
Downie J; A McGettrick; RM Bland; C Kidson
Archives Of Disease In Childhood
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).
http://dx.doi.org/10.1136/archdischild-2016-310863.471
Specialist Paediatric Palliative Care Services: What Are The Benefits?
Paediatric Practice; Paediatric Staffing; Palliative Care
BACKGROUND: The number of children and young people (CYP) living with life-limiting and life-threatening conditions is rising. Paediatric palliative care is a relatively new aspect of healthcare, the delivery of which is variable, with a wide range of healthcare and voluntary sector providers involved. Policy recommendations are for Specialist Paediatric Palliative Care (SPPC) services to be supported by a physician with specialist training. AIM: To examine the research evidence regarding the distinct benefits of SPPC services, with 'Specialist Paediatric Palliative Care' defined as palliative care services supported by a specialist physician. METHOD: Systematic review of studies of SPPC services published in English from 1980 to 2016. Keyword searches were carried out in medical databases (Cochrane, PubMed, EMBASE, CINAHL and AMED) and a narrative synthesis. RESULTS: Eight studies were identified, most of which were retrospective surveys undertaken within single institutions; three were surveys of bereaved parents and three were medical notes reviews. Together they represented a heterogeneous body of low-level evidence. Cross-cutting themes suggest that SPPC services improve the quality of life and symptom control and can impact positively on place of care and family support. CONCLUSIONS: Current evidence indicates that SPPC services contribute beneficially to the care and experience of CYP and their families, but is limited in terms of quantity, methodological rigour and generalisability. Further research is necessary given the significant workforce and resource implications associated with policy recommendations about the future provision of SPPC and to address the need for evidence to inform the design and delivery of SPPC services.
Mitchell Sarah; Morris Andrew; Bennett Karina; Sajid Laiba; Dale Jeremy
Archives Of Disease In Childhood
2017
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/archdischild-2016-312026