Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: establishing a new reality.

OBJECTIVE

Non-malignant brain tumours have the potential to considerably affect functional outcomes and quality of life, with an associated significant burden for carers. There is a lack of knowledge about the care and support needs of patients with a brain tumour and their carers, in the early period following discharge from initial hospitalisation. The purpose of this study was to understand the early post-discharge support services and care requirements of individuals with brain tumour and their family caregivers between short-term (2 weeks) post-discharge and medium-term (3 months) following hospital discharge.

METHODS

A qualitative approach was utilised with semi-structured interviews of nine patients with brain tumour and five of their family caregivers. Thematic content analysis was used to generate in-depth descriptions of the participant's life experiences post-discharge following neurosurgical intervention.

RESULTS

The overarching theme emerging from the data analysis related to patients and carers 'establishing a new reality' underpinned by three primary categories: (1) coping with available supports, (2) adjusting to routines and relationships and (3) emotional responses.

CONCLUSION

Participants had a tendency to rely on informal support networks but identified unmet information and support needs particularly for carers. These findings highlight the need for more efficient and effective discharge preparation, referral to services and supports, provision of timely information and support for family caregivers of those with brain tumour.