A qualitative study of specialist multidisciplinary clinician perspectives on barriers/facilitators to care for children with brain cancer and their families: " We're a little bit different to our adult counterparts ".

Autor:	Luckett T; Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health (IMPACCT), University of Technology Sydney (UTS), Sydney, NSW, Australia., DiGiacomo M; Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health (IMPACCT), University of Technology Sydney (UTS), Sydney, NSW, Australia., Heneka N; Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health (IMPACCT), University of Technology Sydney (UTS), Sydney, NSW, Australia.; Centre for Health Research (Operations), University of Southern Queensland, Toowoomba, QLD, Australia., Disalvo D; Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health (IMPACCT), University of Technology Sydney (UTS), Sydney, NSW, Australia., Garcia M; Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health (IMPACCT), University of Technology Sydney (UTS), Sydney, NSW, Australia., Schaeffer I; Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health (IMPACCT), University of Technology Sydney (UTS), Sydney, NSW, Australia., Attwood R; Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health (IMPACCT), University of Technology Sydney (UTS), Sydney, NSW, Australia.; Infinite Care, Brisbane, QLD, Australia., Phillips J; Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation, Faculty of Health (IMPACCT), University of Technology Sydney (UTS), Sydney, NSW, Australia.; School of Nursing and Centre for Healthcare Transformation, Faculty of Health, Queensland University of Technology (QUT), Brisbane, QLD, Australia.
Jazyk:	angličtina
Zdroj:	Palliative & supportive care [Palliat Support Care] 2024 Oct 09, pp. 1-6. Date of Electronic Publication: 2024 Oct 09.
DOI:	10.1017/S1478951524001421
Abstrakt:	Objectives: Children with brain cancer and their families have complex care needs throughout diagnosis, active treatment, long-term survivorship, and the palliative phase of illness. This study aimed to explore the perspectives of Australian specialist clinicians on barriers and facilitators to health care for children with brain cancer and their families. Methods: A qualitative approach was taken using semi-structured interviews. Eligible participants were clinicians of any discipline providing care to children with brain cancer and their families in Australia. Interviews were conducted by telephone and asked about perceived strengths and weaknesses in health care and available resources for this population. Qualitative content analysis used a directed approach with inductive refinement. Results: Eleven clinicians participated, 5 of whom were medical, 3 nursing, and 3 allied health. The overarching theme was that the rarity and diversity of brain tumors in children confers challenges to care that lead to variation in practice. Participants reported having to adapt care from guidelines and patient/family resources designed for adults with brain cancer and children with other cancers, and rely on clinical and research networks. Specialist comprehensive cancer care was generally perceived to offer the best model for accommodating the unique needs of each child/family, but barriers to access were highlighted for children in remote Australia, and long-term follow-up was perceived to be inadequate regardless of where children lived. Significance of Results: Until further brain cancer-specific paediatric guidelines become available, our findings highlight the need for communities of practice to share resources and reduce unwarranted variation. Conclusion: Future research should focus on developing and evaluating guidelines and other resources specific to children with brain cancer, as well as informing suitable models for long-term follow-up care for survivors.
Databáze:	MEDLINE
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