Feasibility of an online training and support program for dementia carers: results from a mixed-methods pilot randomized controlled trial

Abstract

Background iSupport is an online program developed by the World Health Organization to provide education, skills training, and social support to informal carers of persons with dementia. This pilot study examines the feasibility of the protocol for a main effectiveness trial of iSupport-Portugal and explores how the intervention and control arms compare over time on well-being outcomes. Methods A mixed-methods experimental parallel between-group design with two arms is followed. Participants were recruited nationwide, by referral or advertising, through the National Alzheimer’s Association. Inclusion criteria are being Portuguese adults, providing e-consent, providing unpaid care to someone with dementia for at least 6 months, experiencing relevant scores on burden (≥ 21 on ZBI) or depression or anxiety (≥ 8 on HADS), and using webpages autonomously. Participants were consecutively randomized to receive iSupport-Portugal or an education-only e-book and were not blinded to group assignment. Data were collected online with self-administered instruments, at baseline, 3 and 6 months after. Outcomes comprise caregiver burden, depression, anxiety, QoL, positive aspects of caregiving, and self-efficacy. Generalized estimating equations were used to estimate group, time, and group-by-time effects. Intervention engagement data were extracted from iSupport’s platform. Semi-structured interviews were conducted. Results Forty-two participants were allocated to the intervention (N = 21) and control (N = 21) arms. Participation (78.1%) and retention rates (73.8%) were fair. More carers in the control arm completed the study (N = 20, 95.2%) than in the intervention arm (N = 11; 52.4%) (χ2 = 9.98, p = .002). Non-completers were younger, spent less time caring, and scored higher on anxiety. Among carers in the intervention arm, the average attendance rate was of 53.7%. At post-test 38.9% of participants still used iSupport; the remainder participants interrupted use within 2 weeks (Mdn). For per-protocol analyses, significant group-by-time interaction effects favouring the intervention were found for anxiety (Wald χ2 = 6.17, p = .046) and for environmental QoL (Wald χ2 = 7.06, p = .029). Those effects were not observed in intention-to-treat analyses adjusted for age. Interviewees from the intervention arm (N = 12) reported positive results of iSupport on knowledge and on experiencing positive feelings. No adverse effects were reported. Conclusions This study provides information for a forthcoming full-scale effectiveness trial, as on the acceptability and potential results of iSupport-Portugal. iSupport is suggested as a relevant resource for Portuguese carers. Trial registration ClinicalTrials.gov, NCT04104568. 26/09/2019.

Help-Seeking in Informal Family Caregivers of People with Dementia: A Qualitative Study with iSupport as a Case in Point

“…Preliminary findings about iSupport are promising. Teles and colleagues [ 24 ] highlighted positive results of iSupport regarding caregivers’ knowledge in Portugal, while Oliveira [ 25 ] reported more positive attitudes towards the person with dementia in caregivers using iSupport in Brazil, compared to those who did not. In Switzerland, iSupport is currently being adapted in the Ticino Canton, the southern Italian speaking part of the country.…”

The influence of web‐based decision aids on informal caregivers of people with dementia: A systematic mixed‐methods review

“…Professionals usually guide informal caregivers to use paper-based or video-based decision aids aimed at improving caregivers' knowledge, reducing caregiver burden and improving levels of decision-making conflict and psychological health (Carmody et al, 2014;Stirling et al, 2012). However, the application of decision aids in low-to middle-income countries, rural areas and remote areas is challenging due to a lack of the prerequisites necessary to ensure sustainable delivery given factors such as time constraints and inconvenient transportation (Baruah, Varghese, et al, 2021;Blusi et al, 2014Blusi et al, , 2015Teles et al, 2022).…”

“…I knew that I had it there for me to use every time I felt I needed it. (Teles et al, 2022) Some aids also provided informal caregivers with other external resources, such as directing caregivers to low-cost assistance and allowing them to apply for nursing allowances (Hoffman et al, 2020;Manivannan et al, 2022).…”

“…Their anxiety levels were assessed at baseline, 3 months and 6 months. There were significant differences in anxiety between the two groups (p = 0.046; Teles et al, 2022). However, in Gustafson et al (2019), 31 informal caregivers were randomly assigned to an intervention group using the Dementia-Comprehensive Health Enhancement Support System and a control group reading a printed book for a period of 6 months.…”

“…Nevertheless, the sample sizes of these randomized controlled studies varied widely, ranging from 15 to 257 participants. Qualitative analysis suggested that web-based decision aids had a moderating effect on loneliness among informal caregivers (Lewis et al, 2010;Teles et al, 2022).…”