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

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Abstract

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.

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Acknowledgements

The authors would like to thank the staff, patients and their caregivers at the Brain Tumour Clinic and Neurosurgery ward of the Princess Alexandra Hospital. The authors would also like to acknowledge and thank Michelle Bennett and Michele Foster for their work on this research project, providing invaluable assistance to the research team. This research was funded by a grant from the South Area Health Services Cancer Clinical Network Training and Developmental Programme. TH is supported by a Career Development Award from the National Health and Medical Research Council (Australia).

Conflict of interest

None.

Author information

Authors and Affiliations

  1. Metro North Health Service District, Queensland Health, Chermside, Australia

    Petrea Cornwell

  2. Behavioural Basis of Health Program, Griffith Health Institute, Griffith University, Mt. Gravatt, Australia

    Petrea Cornwell

  3. School of Health and Rehabilitation Sciences, The University of Queensland, St. Lucia, Australia

    Bronwyn Dicks & Jennifer Fleming

  4. Occupational Therapy Department, Princess Alexandra Hospital, Woolloongabba, Australia

    Jennifer Fleming

  5. Metro South Health Service District, Centre for Functioning and Health Research, Buranda, Australia

    Jennifer Fleming

  6. Allied Health Research Unit, Kingston Centre, Southern Health, Victoria, Australia

    Terry P. Haines

  7. Physiotherapy Department, Monash University, Victoria, Australia

    Terry P. Haines

  8. Neurosurgery Department, Chair Multidisciplinary Brain Tumour Clinic, Princess Alexandra Hospital, Woolloongabba, Australia

    Sarah Olson

  9. Metro North Health Service District, The Prince Charles Hospital, Rode Road, Chermside, Queensland, 4032, Australia

    Petrea Cornwell

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  1. Petrea Cornwell
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  2. Bronwyn Dicks
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  3. Jennifer Fleming
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  4. Terry P. Haines
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  5. Sarah Olson
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Corresponding author

Correspondence to Petrea Cornwell.

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Cornwell, P., Dicks, B., Fleming, J. et al. Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: establishing a new reality. Support Care Cancer 20, 2595–2610 (2012). https://doi.org/10.1007/s00520-012-1383-1

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  • DOI: https://doi.org/10.1007/s00520-012-1383-1

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