Inlife, a web-based social support intervention for caregivers of people with dementia: effect evaluation and lessons learned in a randomised controlled trial
ABSTRACT
Background:
Informal care for persons with dementia (PwD) does not only affect the wellbeing of the primary caregiver, but it also changes their roles and interactions with the social environment. New online interventions might facilitate access to social support. Recently, an online social support platform, Inlife, was developed in the Netherlands aiming to enhance social support and positive interactions in informal support networks.
Objective:
The current study aimed to evaluate the effectiveness of Inlife for caregivers of PwD.
Methods:
A randomised controlled trial with 96 caregivers of PwD was performed. Participants were randomly assigned to the Inlife intervention or the waiting-list control group. After 16-weeks of Inlife usage, the waiting-list control group could start using Inlife. Effects were evaluated at baseline (T0), 8-weeks (T1), and 16-weeks (T2). The 16-week follow-up assessment (T2) served as the primary endpoint to evaluate the results for the primary and secondary outcome variables evaluated with online self-report questionnaires. The primary outcomes included feelings of caregiver competence and perceived social support. The secondary outcomes included received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life.
Results:
No significant improvements were demonstrated for the intervention group relative to the control group on primary and secondary outcome measures. This contrasts with our qualitative findings showing the potential of Inlife to facilitate the care process in daily life. Adherence was not optimal for all Inlife users. Additional per protocol and sensitivity analysis also revealed no beneficial results for high active Inlife users or specific subgroups. Inlife users were more active when they had a larger network.
Conclusions:
Researchers should be modest regarding the effectiveness of online caregiver interventions in terms of quantitative measures of well-being and quality of life. Nevertheless, online tools have the potential to facilitate the caregiver process in daily life. Lessons learned include the importance of harnessing the power of human interaction in eHealth and make use of the user’s social capital, and the need to develop research methods that can identify benefits in daily life that are ecologically valid for caregivers. Clinical Trial: Dutch trial register NTR6131, Registered on 20 October 2016.
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