Process evaluation of a social support platform ‘Inlife’ for caregivers of people with dementia

Abstract

IntroductionInformal caregivers of persons with dementia have an increased risk of facing social isolation. Online social media interventions might offer a new opportunity to increase access to social support. An online social support platform, ‘Inlife’, was developed and launched in the Netherlands to enhance social support, positive interactions and information sharing in informal support networks.ObjectiveA process evaluation was performed to evaluate the internal and external validity of the Inlife intervention.MethodsImplementation, sampling and intervention quality were evaluated by both qualitative and quantitative methods. Analyses were performed using descriptive statistics and inductive content analysis. Analyses were conducted following participants' completion of the intervention after 16 weeks.ResultsThe overall participation rate in the study was 27% (96/351). The Inlife intervention was generally well-received by the primary caregivers. Inlife facilitated empowerment, openness, involvement, and efficient care organization. Still, adherence was not optimal for all Inlife users. Determinants for Inlife use were identified on the level of the Inlife innovation, the users, and the socio-political context.ConclusionsInlife was evaluated as a useful instrument for efficient central care coordination and mutual involvement. This study emphasizes that the personal attitudes of the Inlife users to seek and provide support warrant attention, next to the characteristics of the actual Inlife innovation for optimal intervention uptake. Online and offline support might be integrated to raise awareness of caregiver social support needs and attitudes and provide insight into caregivers' available social capital.Trial registrationDutch trial register NTR6131, Registered on 20 October 2016.

Efecto de una intervención de soporte social en cuidadores de personas con enfermedad crónica

“…Se reportan estudios con resultados similares a los obtenidos en esta investigación (35,36), implementando TIC como plataformas virtuales y teleconferencias que procuran brindar educación al cuidador sobre la enfermedad, redes de apoyo social e interacción con otros cuidadores, con el fin de aminorar la carga de cuidado, lo que evidencia baja adherencia de los cuidadores a las TIC, sin cambios significativos sobre la variable de percepción de carga.…”

The implementation of EHealth in dementia care

“…Regarding the results of the internet search and the survey responses, the findings indicated that, 3/5 of the authors of the still-available interventions took part in the survey, versus 3/7 of the authors of the discontinued interventions. Based on the available online information and the responses received from the authors, it could be deduced that, of the five still-operating interventions, two were exclusively available through participating in a trial 29,31 , one was only available to select clinical staff previously associated with the research project 32 , and two were freely available online 28,30 . The most commonly reported facilitator (mentioned in four out of six responses), developing a commercialisation and/or business plan, did not appear to be a guarantee of success.…”

“…Instead, there is a marked focus on effectiveness research. A frequently used framework that guides much of this intervention effectiveness research is the Medical Research Council's (MRC) framework for complex interventions 29 . It has been used in a variety of contexts to develop and evaluate complex interventions, including interventions in dementia care 30,31 .…”

“…Otherwise no follow-up publications examining subsequent implementation were found. Of the five interventions with a follow-up paper, two are still available to use 29,32 .…”

“…The responses to the survey came from authors involved in the interventions tested in Coulehan 30 , Lewis, et al 29 , Marziali and Garcia 32 , Ducharme, et al 31 , and van der Roest, et al 38 , with additional email correspondence from the first author of the Beauchamp, et al39 publication. Three of the respondents reported that their interventions 29,38,39 were no longer available for use. Three of the respondents reported that their interventions30-32…”