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

Article

Luckett, Tim, DiGiacomo, Michelle, Heneka, Nicole, Disalvo, Domenica, Garcia, Maja, Schaeffer, Isabelle, Attwood, Robyn and Phillips, Jane. 2024. "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." Palliative and Supportive Care. 22 (6), pp. 2096-2101. https://doi.org/10.1017/S1478951524001421
Article Title

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

ERA Journal ID40896
Article CategoryArticle
AuthorsLuckett, Tim, DiGiacomo, Michelle, Heneka, Nicole, Disalvo, Domenica, Garcia, Maja, Schaeffer, Isabelle, Attwood, Robyn and Phillips, Jane
Journal TitlePalliative and Supportive Care
Journal Citation22 (6), pp. 2096-2101
Number of Pages6
Year2024
PublisherCambridge University Press
Place of PublicationUnited States
ISSN1478-9515
1478-9523
Digital Object Identifier (DOI)https://doi.org/10.1017/S1478951524001421
Web Address (URL)https://www.cambridge.org/core/journals/palliative-and-supportive-care/article/qualitative-study-of-specialist-multidisciplinary-clinician-perspectives-on-barriersfacilitators-to-care-for-children-with-brain-cancer-and-their-families-were-a-little-bit-different-to-our-adult-counterparts/C495CF8F3FF481A450B11130003A754A
Abstract

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.

Keywordspediatrics; brain neoplasms; quality of health care; health-care personnel; qualitative research
Contains Sensitive ContentDoes not contain sensitive content
ANZSRC Field of Research 2020321199. Oncology and carcinogenesis not elsewhere classified
Byline AffiliationsUniversity of Technology Sydney
Centre for Health Research
Infinite Care, Australia
Queensland University of Technology
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Exploring opiate errors in the specialist cancer and palliative care setting: perceptions of key stakeholders
Phillips, Jane, Heneka, Nicole and Shaw, Tim. 2013. "Exploring opiate errors in the specialist cancer and palliative care setting: perceptions of key stakeholders." COSA Annual Scientific Meeting 2013. Adelaide, Australia 12 - 14 Nov 2013 Australia.
Mapping cancer pain screening, assessment and reassessment practices within one Australian health district: results from a baseline chart audit
Phillips, Jane, Heneka, Nicole and Shaw, Tim. 2013. "Mapping cancer pain screening, assessment and reassessment practices within one Australian health district: results from a baseline chart audit." COSA Annual Scientific Meeting 2013. Adelaide, Australia 12 - 14 Nov 2013 Australia.
Impact of a Qstream Online Learning Module on Palliative Care Nurses’ Pain Assessment Competencies and Patients’ Reports of Pain: Results from a Quasi-Experimental Pilot Study
Phillips, Jane, Heneka, Nicole, Hickman, Louise, Lam, Lawrence and Shaw, Tim. 2013. "Impact of a Qstream Online Learning Module on Palliative Care Nurses’ Pain Assessment Competencies and Patients’ Reports of Pain: Results from a Quasi-Experimental Pilot Study." COSA Annual Scientific Meeting 2013. Adelaide, Australia 12 - 14 Nov 2013 Australia.