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Brain cancer patient and support persons’ experiences of psychosocial care: a mapping of research outputs

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Abstract

Background

People with brain cancer and their support persons (SPs) are critical sources of information on the components of care that contribute to psychosocial outcomes.

Aims

To determine the proportion of studies that examined (1) at least one of 14 nominated components of psychosocial cancer care and (2) more than one component of care.

Methods

Medline, The Cochrane Library, PsycINFO and Embase were electronically searched for publications from January 1999 to December 2019. Publications that met the inclusion criteria were coded according to the number and type of psychosocial care components assessed from 14 listed components, and whether patient and/or SPs’ views about care were elicited.

Results

Of the 113 included publications, 61 publications included patient-reported data only (54%), 27 included both patient and SP-reported data (24%) and 25 included SP-reported data only (22%). Most assessed a single component of care (77% of patient-reported and 71% of SP-reported). No publications assessed all 14 components. The “Psychosocial” component was the most frequently assessed component of care for patient-reported (n = 80/88, 91%) and SP-reported publications (n = 46/52, 88%).

Conclusions

Publications reporting on psychosocial care in brain cancer present a relatively narrow view of patient and support person experiences. The inclusion of both patient and support person perspectives and the assessment of multiple components of care are required in future research to optimize psychosocial outcomes in brain cancer.

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Data availability

Datasets are available from the corresponding author on reasonable request.

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Acknowledgements

The authors would like to acknowledge the assistance of Sarah Tew in preparing the manuscript and Angela Smith for assisting with the search strategy and execution.

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Funding

This research was supported by a Strategic Research Partnership Grant (CSR 11–02; RSF) from The Cancer Council NSW. LB is supported by a University of Newcastle PhD Scholarship. These funding sources had no role in the design of this study and did not have any role during its execution, analyses, interpretation of the data or decision to submit results. This research was also supported by infrastructure funding from University of Newcastle and Hunter Medical Research Institute.

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Authors and Affiliations

  1. Health Behaviour Research Collaborative, School of Medicine and Public Health, Faculty of Health and Medicine, University of Newcastle, Callaghan, NSW, Australia

    Lucy A. P. Boyd, Amy E. Waller & Rob W. Sanson-Fisher

  2. Priority Research Centre for Health Behavior, University of Newcastle, Callaghan, NSW, Australia

    Lucy A. P. Boyd, Amy E. Waller & Rob W. Sanson-Fisher

  3. Hunter Medical Research Institute, New Lambton Heights, NSW, Australia

    Lucy A. P. Boyd, Amy E. Waller & Rob W. Sanson-Fisher

  4. Department of General Practice and Centre for Cancer Research, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Melbourne, VIC, 3010, Australia

    Lucy A. P. Boyd

  5. School of Population and Global Health and School of Psychological Sciences, University of Melbourne, Parkville, VIC, Australia

    David Hill

  6. School of Medicine and Public Health, Faculty of Health and Medicine, University of Newcastle, Callaghan, NSW, Australia

    David Hill

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All authors conceived the study design and methodology. Authors 1 and 2 contributed to data acquisition and analysis. All authors contributed to the interpretation of study findings, have read and approved the final version.

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Correspondence to Lucy A. P. Boyd.

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Boyd, L.A.P., Waller, A.E., Hill, D. et al. Brain cancer patient and support persons’ experiences of psychosocial care: a mapping of research outputs. Support Care Cancer 29, 5559–5569 (2021). https://doi.org/10.1007/s00520-021-06071-6

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