A call for increased paediatric palliative care research: Identifying barriers

Beecham, Emma; Hudson, Briony; Oostendorp, Linda; Candy, Bridget; Jones, Louise; Vickerstaff, Victoria; Lakhanpaul, Monica; Stone, Patrick; Chambers, Lizzie; Hall, Doug; Hall, Kate; Ganeshamoorthy, Thines; Comac, Margaret; Bluebond-Langner, Myra

doi:10.1177/0269216316648087

Cited by 19 publications

(23 citation statements)

References 2 publications

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“…4 The provision of quality care to young people with LLC requires the critical establishment of robust evidence on the symptoms and concerns that matter to the patients and their families. 12 Despite the need for this evidence, there is currently limited information on meaningful outcomes for young people with LLC. 12,13 This need for patient-level data is more pressing than ever amidst the worldwide demand to address the absence of person-centred outcome measures in the measurement of the quality of paediatric care.…”

Section: Introductionmentioning

confidence: 99%

“…12 Despite the need for this evidence, there is currently limited information on meaningful outcomes for young people with LLC. 12,13 This need for patient-level data is more pressing than ever amidst the worldwide demand to address the absence of person-centred outcome measures in the measurement of the quality of paediatric care. 13,14 Generating population-specific measures of Health-Related Quality of Life (HRQOL) is the key to developing palliative care for young people.…”

Section: Introductionmentioning

confidence: 99%

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Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Namisango

Bristowe

Allsop

et al. 2018

Patient

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Background: The design and provision of quality paediatric palliative care should prioritize issues that matter to children and their families, for optimal outcomes. Aim: This review aims to identify symptoms concerns and outcomes, that matter to children and young development of a relevant framework of health outcomes. Study Design: This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources: Data sources such as PsychINFO, Medline, EMBASE, CINAHL, OpenGrey, and Science Direct Journals have been searched from 1 August 2016 to 30th July 2017. The study also incorporates consultations with experts in the field, citation searchers via Scopus, and a hand search for reference lists of included studies. Results: Out of the 13,567 articles that have been evaluated, 81 studies were included. Of these, (n=68) are from high-income countries and (n=58) are cancer patients studies. A total of 3,236 young people, 2,103 family carers, 108 families, and 901 healthcare providers are included in the studies. Young people have not contributed to data in 30% of studies. Themes on priority concerns are presented by domain and health outcome; for example, 1) Physical (n=62 studies); e.g. physical symptoms, 2) psychological (n=65); e.g. worry 3) psycho-social (n=31); e.g. relationships, 4) existential Conclusion: Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory, so paediatric palliative care should not be limited to the end of life phase. A child-family centred framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Namisango

Bristowe

Allsop

et al. 2018

Patient

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“…Whilst sharing experience and wisdom was valuable, particularly when the specialty was in its infancy, it is important now to develop an evidence base to ensure that children, young people and their families receive the highest standard of care. This requires fostering the development of a research culture, including trained clinical and non‐clinical researchers, who will pursue a penetrating and rigorous research agenda (Beecham et al, ).…”

mentioning

confidence: 99%

“…It is acknowledged that much of what we currently do in children's and young people's palliative care is eminence-based, rather than evidence-based (Together for Short Lives, 2018). Whilst sharing experience and wisdom was valuable, particularly when the specialty was in its infancy, it is important now to develop an evidence base to ensure that children, young people and their families receive the highest standard of care.This requires fostering the development of a research culture, including trained clinical and non-clinical researchers, who will pursue a penetrating and rigorous research agenda (Beecham et al, 2016).Research in children's palliative care shares many of the challenges common to any field of inquiry-time, funding, governancebut also some that are unique. It can be a particularly lonely road for doctoral research candidates, who often find themselves without…”

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confidence: 99%

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Undertaking doctoral research with children and young people with life‐limiting or life‐threatening conditions

Harris

Blackburn

Noyes

et al. 2019

Journal of Advanced Nursing

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Doctoral level research can contribute to the evidence base, particularly in under-researched areas and numerically small fields such as children and young people's palliative care. It is acknowledged that much of what we currently do in children's and young people's palliative care is eminence-based, rather than evidence-based (Together for Short Lives, 2018). Whilst sharing experience and wisdom was valuable, particularly when the specialty was in its infancy, it is important now to develop an evidence base to ensure that children, young people and their families receive the highest standard of care. This requires fostering the development of a research culture, including trained clinical and non-clinical researchers, who will pursue a penetrating and rigorous research agenda (Beecham et al., 2016).Research in children's palliative care shares many of the challenges common to any field of inquiry-time, funding, governancebut also some that are unique. It can be a particularly lonely road for doctoral research candidates, who often find themselves without the support of a similarly situated research peer group.

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