Don’t need help, don’t want help and can’t get help: Why primary brain tumour patients don’t utilise supportive care services

Langbecker, Danette H., Ekberg, Stuart, & Yates, Patsy (2016) Don’t need help, don’t want help and can’t get help: Why primary brain tumour patients don’t utilise supportive care services. In MASCC/ISOO 2016 Annual Meeting, 23-25 June 2016, Adelaide, S.A.

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Abstract

Introduction

  • It remains unclear why many primary brain tumour patients do not use available supports or support services despite reporting high levels of unmet supportive care needs and distress.

Objectives

  • To understand the reasons why adults with primary brain tumours do not use formal supports or services when reporting a need for help.

Methods

  • Following a quantitative survey of supportive care needs and support/service utilisation (reported elsewhere), semi-structured telephone interviews were conducted with a subsample of 19 adults recently diagnosed with primary brain tumours. Thematic analysis was used to identify recurring ways participants described their use of supportive care services.

Results

  • Analysis identified three themes: that they did not need help, did not want help, and experienced barriers to support utilisation. When indicating that they did not need help, participants typically reported positive experiences relative to their expectations or the experiences of others; difficulties recognising their needs due to cognitive change; ignoring their needs as a coping strategy; or utilising their own or informal resources. When reporting not wanting help, participants mentioned preferences to self-manage problems or accept issues; foci other than supportive care needs; conscious choices not to seek help; and questioning of the value of supports or services available. Barriers to support service utilisation reported were unawareness of needs, supports available, and their relationship; incapacity due to tumour/treatment; access issues; and unsuccessful help-seeking attempts.

Conclusions

  • Recognition of patients’ difficulties in recognising their needs and preferences for self-management or informal supports suggest new avenues for meeting their unmet needs.

Impact and interest:

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ID Code: 96551
Item Type: Conference Item (UNSPECIFIED)
Refereed: Yes
Keywords: supportive care, brain tumours, service utilisation
ISSN: 1433-7339
Divisions: Current > QUT Faculties and Divisions > Faculty of Health
Current > Institutes > Institute of Health and Biomedical Innovation
Current > Schools > School of Nursing
Funding:
  • IHBI EARLY CAREER/N/A
Copyright Owner: Copyright 2016 Springer
Deposited On: 06 Jul 2016 22:09
Last Modified: 07 Jul 2016 05:17

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