Discussion
HGG
The Care-IS intervention was effective in improving carer self-reported preparedness to care at 4 months and subsequent points until 12 months when data collection ceased. This work builds on Boele et al.’s [We found, despite improvements in carer preparedness, for carers who remained in the RCT carer distress was not significantly different at follow-up time points compared to participants in the control group. Similarly, QoL was not significantly different between groups. We propose changes did not occur in the intervention group due to the debilitating and progressive nature of HGG and ongoing caring responsibilities. This finding contrasts with Thakur et al.’s [While we have demonstrated we can improve carers’ preparedness to care, reducing carers distress is challenging due to clinical context and declining trajectory of HGG patients. Coping with ongoing deterioration in health status of patients will present consistent new challenges and feelings of loss in carers, which this complex intervention was unable to mitigate in comparison to the control arm. Hudson et al.’s [Usual care for patients diagnosed with HGG and their carers varies across Australia [While our intervention involved provision of information, support, and referrals for carers and patients, we do not currently know whether this advice was actioned by individual carers. There is a need to map referrals made to services accessed to understand the advice carers were able to implement. There is a need to explore, perhaps using mixed methods designs, the barriers to carer implementation of advice and/or referrals to overcome these barriers to care.