Supportive care for carers of people with high-grade glioma
An article written by Diana Jones
I would like to share with you the findings from a systematic review of supportive strategies for carers of people with high-grade glioma (HGG) that our research team conducted in 2021/22. [1] The impetus for this research came from the clinical space, in recognising that carers have a significant burden in managing the diverse physical, cognitive and behavioural changes that can occur in people with HGG. This burden, combined with a rapid transition into the caring role, can lead to significant carer distress, anxiety, and depression with distress continuing into bereavement.
We know from previous research that carers of people with HGG have unmet needs across various domains in providing care for people managed primarily in the outpatient setting. Proactive information and support to manage symptoms is essential, in particular at the crucial stages of diagnosis, recurrence, and transition to end-of-life care. Equally, emotional support is a ‘lifeline’ for carers struggling with grief and the loneliness of caring. Acknowledging carer needs recognises their essential role in the healthcare team, however carers report feeling overlooked and taken for granted by health care professionals, with the focus on patient symptoms rather than the ‘whole picture’ of the patient as part of a family structure.
Our review explored the carer-reported benefits of supportive interventions, with the goal to identify what components of supportive care were most promising to pursue as a research focus. We identified 21 studies across six countries, with most involving some form of psycho-education (see reference for full details). In relation to palliative care, one Melbourne study (I-CoPE) provided structured supportive and palliative care via a cancer care coordinator, while three studies targeted carer support in the palliative phase of treatment. The first of these was a community palliative care trial in Western Australia, in which carers identified their needs using the Care Support Needs Assessment Tool (CSNAT). Feedback from carers highlighted that regular needs screening provided reassurance, empowered carers to find solutions, and encouraged them to reflect on the emotional impact of caregiving. The other two studies involved early referral to a comprehensive palliative home-care program in Rome, Italy. The program aimed to meet patient care needs at each phase of the disease, and to provide practical and psychological support for family caregivers including bereavement support.
Supportive strategies that were valued by carers were those that incorporated some element of emotional support. Both peer support and support from the health care team was valued in providing a ‘safe space’ and a ‘sounding board’ for carers to discuss sensitive issues. Similarly, strategies that provided carer education helped to build knowledge, confidence, and preparedness to care.
The diversity of needs addressed in the included studies highlights the value of implementing tailored supportive interventions that can respond to emerging carer needs. Starting with a self-assessment of needs not only allows carers to identify when and where they require assistance, but provides an individualised and timely response to needs, and avoids unwanted and unnecessary interventions that could strain already limited health care resources.
What’s next? We have incorporated the learnings from this review into the GAINS pilot study (Glioma carers: Assessment of Individual Needs and Support) at the Princess Alexandra Hospital in Brisbane. Our nurse-led, carer-driven project aims to improve carers’ preparedness and confidence to care, and reduce distress. This aligns with Standard 3 of the Australian Palliative Care National Standards which recommends a needs assessment for family and carers to directly inform the provision of support and role guidance.
References
- Jones D, Pinkham MB, Wallen MP, Hart NH, Joseph R, Strodl E, Ownsworth T, Beesley V, Crichton M, Chan RJ. Benefits of supportive strategies for carers of people with high-grade glioma: a systematic review : Strategies for addressing the needs of high-grade glioma carers. Support Care Cancer. 2022 Dec;30(12):10359-10378. doi: 10.1007/s00520-022-07419-2. Epub 2022 Oct 25.
Diana Jones
Clinical Nurse,
Radiation Oncology Department,
Princess Alexandra Hospital, Brisbane