Feasibility Testing and Refinement of a Supportive Educational Intervention for Carers of Patients with High-Grade Glioma — a Pilot Study

Abstract

The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.

Use of telehealth platforms for delivering supportive care to adults with primary brain tumors and their family caregivers: A systematic review

“…Half of the studies conducted a post‐intervention follow‐up of at least 1 month. Only two studies by Moscato et al 38 and Halkett et al 40 developed the interventions through a co‐design process.…”

“…Telehealth platforms included telephone‐based support, 40,42,43,48,53 videoconferencing, 41,44,54 web‐based programs and resources 45–47,49–52 or combined use of videoconferencing and self‐guided web‐based modules 38 . Caregivers were involved in 31% of interventions, including three supporting both patients and caregivers 41,42,45,48 and a carer‐specific information and support program 40 . In terms of the nature of communication, eight interventions (50%) involved synchronous communication, or interaction in real‐time with professionals, 40–44,48,53,54 whereas four (25%) involved a combination of interaction in real‐time and self‐guided online programs and resources 38,47,49,50 and four (25%) were mainly self‐guided with asynchronous communication, 45,46,51,52 such as delayed email feedback.…”

“…Halkett et al 40 piloted a multi‐component supportive education intervention (CARE‐IS) for carers of patients with HGG undergoing treatment (≤2 months since diagnosis). Their focus was on scoping the feasibility of both the intervention and survey completion at baseline and post‐intervention.…”

“…Importantly, participants with high levels of adherence, or those completing the intervention typically reported high levels of acceptability or satisfaction ( M = 81%) irrespective of the mode of communication 40,43,44,48–52 . In the only study to compare mode of delivery, Patil et al 44 found that the level of satisfaction with video clinic follow‐up (extremely satisfied = 80%) was comparable to conventional face‐to‐face follow‐up (extremely satisfied = 86%).…”

Feasibility and acceptability of a telehealth platform for delivering the Making Sense of Brain Tumour programme: A mixed-methods pilot study

“…Research on the comparability of outcomes for psychological support delivered via videoconferencing and in-person is also needed for this population, as demonstrated for stroke (Chen et al, 2015). Given the primary focus of the Tele-MAST programme on individuals with brain tumour, it is essential to trial the use of telehealth platforms for addressing family caregivers' support needs (see Halkett et al, 2018).…”