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What do carers of people with high-grade glioma perceive could improve their preparedness to care, and what additional support do they require?
Clarke, James J; Halkett, Georgia K B; McDougall, Emma; Dhillon, Haryana M; Lobb, Elizabeth; Phillips, Jane L; Hudson, Peter; Nowak, Anna K.
Affiliation
  • Clarke JJ; Faculty of Health Sciences, Curtin School of Nursing/Curtin Health Innovation Research Institute, Curtin University, Bentley, Western Australia, Australia.
  • Halkett GKB; Faculty of Health Sciences, Curtin School of Population Health/Curtin EnAble Institute, Curtin University, Bentley, Western Australia, Australia.
  • McDougall E; Faculty of Health Sciences, Curtin School of Nursing/Curtin Health Innovation Research Institute, Curtin University, Bentley, Western Australia, Australia.
  • Dhillon HM; Faculty of Health Sciences, Curtin School of Nursing/Curtin Health Innovation Research Institute, Curtin University, Bentley, Western Australia, Australia.
  • Lobb E; Faculty of Science, Psycho-Oncology Cooperative Research Group, School of Psychology, University of Sydney, Sydney, Australia.
  • Phillips JL; Centre for Medical Psychology & Evidence-based Decision-making, Sydney, Australia.
  • Hudson P; Faculty of Health, ImPACCT, University of Technology Sydney, Ultimo, New South Wales, Australia.
  • Nowak AK; Faculty of Health, ImPACCT, University of Technology Sydney, Ultimo, New South Wales, Australia.
Neurooncol Pract ; 11(3): 296-306, 2024 Jun.
Article in En | MEDLINE | ID: mdl-38737602
ABSTRACT

Background:

Concerning levels of stress, strain, and poorer mental health are observed in family carers of patients diagnosed with high-grade glioma (HGG). Understanding the reported unmet needs of these carers will enable future interventions to address such needs to improve their preparedness for care and well-being. In this secondary analysis, we aimed to explore (i) what carers of people with HGG perceive could improve their preparedness to care; and (ii) what needs carers reported they required additional support with.

Methods:

Responses from 188 carers of patients with HGG participating in a randomized controlled trial of the Care-IS intervention were analyzed to identify reported unmet needs. Of this larger sample, 92 participants answered a qualitative question seeking to identify perceived unmet needs in carer preparedness over 12 months. These responses comprised the data for the current secondary analysis. Content analysis was used to analyze the qualitative data and observe trends across participant responses.

Results:

Five overarching themes were identified carer needs, providing emotional and practical care, coping with uncertainty, coping with the consequences of illness progression, and processing and supporting end-of-life care. Notably, the content analysis identified differences in response numbers between groups in the Care-IS trial, particularly with the control group having more needs regarding illness progression and end-of-life care.

Conclusions:

Future interventions aimed at improving the well-being and preparedness of carers of people with HGG should consider providing better support centered on carer needs, their changed circumstances, living with uncertainty, and care transition.
Key words

Full text: 1 Collection: 01-internacional Database: MEDLINE Language: En Journal: Neurooncol Pract Year: 2024 Document type: Article Affiliation country: Country of publication:

Full text: 1 Collection: 01-internacional Database: MEDLINE Language: En Journal: Neurooncol Pract Year: 2024 Document type: Article Affiliation country: Country of publication: