Process evaluation of a social support platform 'Inlife' for caregivers of people with dementia.

INTRODUCTION: Informal 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. OBJECTIVE: A process evaluation was performed to evaluate the internal and external validity of the Inlife intervention. METHODS: Implementation, 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. RESULTS: The 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. CONCLUSIONS: Inlife 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 REGISTRATION: Dutch trial register NTR6131, Registered on 20 October 2016.

A mismatch between supply and demand of social support in dementia care: a qualitative study on the perspectives of spousal caregivers and their social network members.

ABSTRACTBackground:Access to social support contributes to feelings of independence and better social health. This qualitative study aims to investigate multi-informant perspectives on informal social support in dementia care networks. METHODS: Ten spousal caregivers of people with dementia (PwD) completed an ecogram, a social network card and a semi-structured interview. The ecogram aimed to trigger subjective experiences regarding social support. Subsequently, 17 network members were interviewed. The qualitative analyses identified codes, categories, and themes. RESULTS: Sixth themes emerged: (1) barriers to ask for support; (2) facilitators to ask for support; (3) barriers to offer support; (4) facilitators to offer support; (5) a mismatch between supply and demand of social support; and (6) openness in communication to repair the imbalance. DISCUSSION: Integrating social network perspectives resulted in a novel model identifying a mismatch between the supply and demand of social support, strengthened by a cognitive bias: caregivers reported to think for other social network members and vice versa. Openness in communication in formal and informal care systems might repair this mismatch.

Development and feasibility of Inlife: A pilot study of an online social support intervention for informal caregivers of people with dementia.

BACKGROUND: Informal caregivers of individuals with dementia have an increased risk to face social isolation due to progression of the disease. Online social media interventions might offer a new opportunity to increase access to social support and enhance positive interactions and openness in dementia care networks. OBJECTIVE: This explorative pilot study describes (1) the development of an online social support intervention Inlife, and (2) the evaluation of the feasibility of this intervention and the measurements to assess its effectiveness. METHODS: The Medical Research Council (MRC) framework guided the development of the online social support intervention. This is a stepwise approach that integrates potential users' views with the development and validation of the program content. The program was developed by combining (1) individual caregiver interviews (n = 10), (2) focus group sessions with experts and web designers (n = 6), and (3) individual think-aloud tests (n = 2). Subsequently, a pilot study with informal caregivers was conducted (n = 25) to examine the program's feasibility and preliminary effectiveness. Online self-report measures were completed at baseline and at four follow-up time points. RESULTS: In total, 23 participants completed the newly developed Inlife intervention. Despite the high number of low-active users (17/23, 73%), Inlife had a good feasibility score of 7.1 (range: 1-10). The Calendar and Timeline were used most frequently and contributed to better care coordination and positive interactions. CONCLUSIONS: Although the Inlife platform received a sufficient feasibility rating, the uptake was not optimal. Therefore, the Inlife platform was adapted to limit the number of low-active users and improve user friendliness. Recommendations for additional treatment adherence were provided. The development according to the MRC framework and the sufficient feasibility rating of Inlife formed the basis for a future effectiveness study.

Effectiveness of an online social support intervention for caregivers of people with dementia: the study protocol of a randomised controlled trial.

BACKGROUND: Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled "Inlife" was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics. METHODS: A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T0) and at 8-week (T1), 16-week (T2) and 42-week follow up (T3). The 16-week follow-up assessment (T2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention. DISCUSSION: Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care. TRIAL REGISTRATION: Dutch trial register, NTR6131 . Registered on 20 October 2016.

A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise?

OBJECTIVE: Social support interventions for caregivers of persons with dementia (PwD) are important because informal carers often rely on their social networks for support. This systematic review synthesises findings from research on social support interventions, and examines their methodological quality and effectiveness on caregiver social support and well-being variables. METHODS: A systematic literature search utilised five databases. Papers were selected when the primary aim of the intervention was to improve social support. Quality of papers was assessed by the Level of Evidence grade and the criteria list from the Cochrane Back Review Group. RESULTS: 39 papers were identified and classified into 4 social support intervention categories: befriending and peer support, family support and social network interventions, support groups, and remote interventions using the internet or telephone. Content, intensity, uptake, effectiveness and quality of interventions varied widely. In general, the level of evidence was low. Most studies measured effect on well-being variables, while few examined social support outcomes. Multi-component social support interventions were most effective. Evidence suggested, also a caregiver benefit from remote interventions. Generally, results were inconsistent; some papers demonstrated beneficial results, while others demonstrated no improvement on social support and well-being variables. Social support outcomes were more positively evaluated when qualitative outcome measures rather than quantitative measures were used. CONCLUSIONS: Although multi-component social support interventions may improve caregiver well-being, there is insufficient evidence to conclude whether a change in social support is the underlying mediating factor. The inclusion, validation and operationalization of caregiver social support measures deserve more attention.