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

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.