Specialist paediatric palliative care services: what are the benefits?

Mitchell, Sarah; Morris, Andrew; Bennett, Karina; Sajid, Laiba; Dale, Jeremy

doi:10.1136/archdischild-2016-312026

Cited by 56 publications

(56 citation statements)

References 27 publications

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“…Paediatric palliative care is still a relatively new subspecialty and is inconsistently available across services and countries 9 89. With the provision of CPC services varying internationally, many are unable to access the palliative care services they need 89.…”

Section: Resultsmentioning

confidence: 99%

“…The nature of life-limiting illness trajectories for children often leads to unpredictable levels of health which can be difficult to manage. This, therefore, means that providing services for these children can be challenging, with many accessing services needing to do so on a flexible basis to suit their unpredictable and changing level of health 9. The literature also indicates that access to CPC services is an issue,10 with poor accessibility and availability of services having been evidenced to be a barrier to an individual’s needs being met.…”

Section: Introductionmentioning

confidence: 99%

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Children’s unmet palliative care needs: a scoping review of parents’ perspectives

Constantinou

Garcia

Cook

et al. 2019

BMJ Support Palliat Care

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BackgroundChildren with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families’ needs by exploring and identifying the parents’ perspectives of unmet needs.AimTo identify what published evidence is available on the unmet needs of children with life-limiting conditions and their families, from the perspective of parents, internationally.Eligibility criteriaInclusion criteria: papers from the perspective of parents of children aged 0–19 years, who have a life-limiting condition and are receiving palliative care. Exclusion criteria: those papers not written in English, not reporting primary research and discussing children who died from stillbirth, accidental or unexpected circumstance.Charting methodsA scoping review was conducted in accordance with the methods of Arksey and O’Malley.Sources of evidenceThe electronic databases PubMed, MEDLINE, CINAHL and PsycINFO were searched. Key terms included: parent, needs, met/unmet/satisfaction, palliative/supportive/end of life care, life-limiting/life-threatening illness, infants/children/young people.ResultsTotal hit indicated 5975 papers for screening. Fifty-five papers met the scoping review criteria. The majority used mixed-methods approaches inclusive of: questionnaires, self-report measures, in-depth interviews, focus groups, case record analysis and art-based workshops. Unmet needs included: respite care, coordination and organisation of care, psychological support and professional communication skills.ConclusionsThe findings suggest many unmet needs from the parent’s perspective, across several aspects of the Quality Standards and Children’s Palliative Care Frameworks. Further research is needed which explores the parent’s unmet needs in palliative care services.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Children’s unmet palliative care needs: a scoping review of parents’ perspectives

Constantinou

Garcia

Cook

et al. 2019

BMJ Support Palliat Care

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“…For eight potential participants this support was unavailable. One of the goals of paediatric palliative care is to provide choice in place of care and death to patients and their families (6,8). Lack of service provision for patients at home may be disadvantaging patients from the choice of certain types of pain management such as PCA (3).…”

Section: Discussionmentioning

confidence: 99%

“…In the UK, as in other countries, paediatric palliative care patients move between places of care, requiring joint working with other hospitals, hospices, home care or community care teams (6). The patients in this study were given PCA under the supervision of a hospital tertiary palliative care service, however, day-to-day implementation of their symptom management plan including the PCA pump was the responsibility of a local community-based nursing team.…”

mentioning

confidence: 99%

Patient-Controlled Analgesia for Children With Life-Limiting Conditions in the Community: Results of a Prospective Observational Study

Henderson¹,

Rajapakse

Kelly

et al. 2019

Journal of Pain and Symptom Management

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“…From these groups we have recruited smaller groups for specific activities, including conference presentations, writing papers (19) and the development of further research.…”

Section: An Introduction To the Ppi Groupsmentioning

confidence: 99%

Ethics and patient and public involvement with children and young people

Mitchell

Slowther

Coad

et al. 2018

Arch Dis Child Educ Pract Ed

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Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work.

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Specialist paediatric palliative care services: what are the benefits?

Cited by 56 publications

References 27 publications

Children’s unmet palliative care needs: a scoping review of parents’ perspectives

Children’s unmet palliative care needs: a scoping review of parents’ perspectives

Patient-Controlled Analgesia for Children With Life-Limiting Conditions in the Community: Results of a Prospective Observational Study

Ethics and patient and public involvement with children and young people

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