Poster Presentation Cancer Survivorship Conference 2023

Benefits of supportive strategies for carers of people with high-grade glioma (#126)

Diana Jones 1 2 , Mark B Pinkham 2 3 , Matthew P Wallen 1 4 , Nicolas H Hart 1 3 5 6 , Ria Joseph 1 , Esben Strodl 7 , Tamara Ownsworth 8 , Vanessa Beesley 3 9 , Megan Crichton 3 10 , Raymond J Chan 1 2 3
  1. Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia
  2. Princess Alexandra Hospital, Metro South Hospital and Health Service, Brisbane, QLD, Australia
  3. Cancer and Palliative Care Outcomes Centre, School of Nursing, Queensland University of Technology, Brisbane, QLD, Australia
  4. School of Science, Psychology and Sport, Federation University Australia, Ballarat, VIC, Australia
  5. School of Medical and Health Sciences, Edith Cowan University, Perth, WA, Australia
  6. Institute for Health Research, University of Notre Dame Australia, Perth, WA, Australia
  7. School of Psychology and Counselling, Queensland University of Technology, Brisbane, QLD, Australia
  8. School of Applied Psychology & The Hopkins Centre, Menzies Health Institute Queensland Griffith University, Brisbane, QLD, Australia
  9. Supportive Care in Cancer Group, QIMR Berghofer Medical Research Institute, Herston, QLD, Australia
  10. Bond University Nutrition and Dietetics Research Group, Bond University, Robina, QLD, Australia

Background:  Carers of people with high-grade glioma (HGG) report significant unmet needs and distress, however globally there is a lack of high-quality evidence for effective strategies to address these needs. It is important therefore to look beyond efficacy and evaluate what supportive strategies are beneficial from the carer perspective. This systematic review examined current evidence for carer-reported benefits of supportive care strategies for carers of adults with HGG.

Methods: Four databases (CINAHL, EMBASE, PubMed, PsycINFO) were searched for articles published between January 2005 and April 2022 that assessed strategies for addressing the supportive care needs of carers of adults with HGG. Results were synthesised narratively.

Results: Twenty-one studies across six countries involving 1377 caregivers were included, targeting the carer directly (n = 10), the patient-carer dyad (n = 3), or focused on people with HGG + / - their carers (n = 8). Some studies included rich data which explored carers’ experience of participation, however other studies failed to report meaningful qualitative data to build an understanding of carer benefit. Strategies that demonstrated benefit included those that built carer knowledge or provided emotional support, delivered by health professionals or through peer support. Supportive and early palliative care programs have potential to reduce unmet carer needs while providing ongoing carer and family support.

Conclusion: Strategies incorporating an educational component, emotional support, and a regular needs assessment with corresponding tailored support are most valued by carers. Future practice development research should incorporate both quantitative and qualitative outcome measures, and adopt a value-based approach to evaluate the experience of patients, carers, and clinicians. Further research should address unmet carer needs early in the care journey in a format that is flexible and responsive to emerging needs, feasible concerning time and resource allocation, and economically sustainable to facilitate successful implementation into healthcare settings.