Inlife an online social support platform for caregivers of people with dementia Marjolein de Vugt Alieske Dam Martin van Boxtel Frans Verhey
Outline Background Development of the online platform Research findings Take home message Future perspectives
MRC-Framework Guidelines for the development and evaluation of complex interventions Peter Craig et al. BMJ 2008;337:bmj.a1655
Exploring needs: an interview study Mismatch between supply & demand of support: I don t want to bother her with my problems I really want to help, but I don t know how Open dialogue Dam et al., 2017 International Psychogeriatrics
Development Agile Design Scrum Framework
Goals of Inlife Lowering the threshold to seek support Provide an overview of the social support network in a safe online environment Positive involvement and social engagement in daily life
The Inlife platform A personal app and website to support caregivers and people with dementia Several functionalities to stimulate positive interaction and social support: Circles Timeline Calendar Helping Personal messages Care Book Compass www.myinlife.nl
MRC-Framework Guidelines for the development of complex interventions Peter Craig et al. BMJ 2008;337:bmj.a1655
Feasibility & piloting
Feasibility and piloting Method: N= 23 participants Inlife program participation questionnaire Results The Timeline and Calendar were used most frequently feasibility score: 7.1 (range 1-10) Dam et al., 2017, PLOS ONE
Feasibility and piloting The feasibility rating was sufficient The uptake was not optimal (active versus low-active users) Active users had a larger social network and shorter disease duration the Inlife platform was adapted to limit the number of low-active users and improve user friendliness Dam et al., 2017, PLOS ONE
MRC-Framework Guidelines for the development and evaluation of complex interventions Peter Craig et al. BMJ 2008;337:bmj.a1655
Forthcoming RCT (N=96) Dam et al., 2017, Trials
Process evaluation Method Qualitative interviews to explore user experiences (n=10) Topic List Reasons for use User-friendliness Usability Barriers and facilitators Analysis: Atlas.ti deductive coding
Process evaluation: Results Reasons for use Care planning Involvement with others Using specific Inlife features Determinants of Use a. Users Personal attitudes (burden others) Central motivator Network characteristics Dementia phase/care needs b. Intervention User-(un)friendliness (Positive) user experiences Time/ establishing routine c. Socio-political context Generation Beliefs about privacy/trust ICT Tools
Process evaluation: Results Use of Inlife Circles: useful for privacy Calendar: plan appointments Timeline: sharing on daily basis Helping: needs and offers Carebook: transfer of care Compass: information Effects Increased control Central care organization: monitoring Openness and connectedness Addressing stigma Limited effects: well-being, loneliness, support Disappointment due to lack participation
Take home Message An open dialogue is essential to lower the threshold of asking/ offering support Social applications such as Inlife might increase involvement and connectedness in daily life But people with larger social networks did benefit most For successful implementation it is essential to create awareness of the importance of social relationships and support
MRC-Framework Guidelines for the development of complex interventions Peter Craig et al. BMJ 2008;337:bmj.a1655
Future Perspectives Implementation on a national and international level Translation in English, German, French
Thanks!
The background of Inlife Mismatch between supply & demand of support: Openess Dam et al., 2017 International Psychogeriatrics. Psychogeriatrics