Online support for informal carers of persons with heart failure : Focus on perceptions, development and experiences

Abstract: Background: Heart failure (HF) is a common condition, and its prevalence is expected to increase. The illness trajectory is unpredictable, and its effects will include a potential impact on informal carers, i.e., family, friends, and significant others. Sometimes these persons are affected by the help and care they provide in such a way that they might themselves need support. However, they may be unrecognised in their endeavours, and might also experience a lack of support, especially from healthcare. Online solutions are considered to have the potential to provide accessible support to carers that is also anticipated to be cost-effective.   Aim: This thesis focuses on support to informal carers to persons living with HF, but also take the viewpoint of the person with HF by exploring social supports associations with their health and well-being. The overall aim was to explore perceptions, development, and experiences of online support for informal carers.  Method: This thesis comprises four studies. Study I had a cross-sectional design using self-reported data and data from the Swedish Pace-maker and ICD Registry. Data from 1,550 persons with HF who were living with an ICD and who had complete data on the outcome variable were utilised for both descriptive analysis and logistic regression. The outcome variable, perceived social support, was measured using the questionnaire Multidimensional Scale of Perceived Social Support (MSPSS), which includes measuring support from significant others, family, and friends. The logistic regression was conducted to compare those dichotomised as having low/medium perceived social support to those having high levels of support. Study II had a qualitative design, and data were collected through 8 focus groups with 23 informal carers of persons with HF to explore their perceptions of how online solutions could be of value for support. Data were analysed using qualitative content analysis. Study III had a descriptive design. It describes the co-design process of an online support pro-gramme for carers through three phases. In phase I, topics and content that reflected carers needs and preferences were identified. In phase II, the content for the support programme was developed and through phase III the content was refined and finalised. Informal carers participated in every phase, and the co-design process also involved professionals with expertise in, for example, HF and caregiving, for the development of content. It was an iterative process, moving back and forth between phases, and the re-search group acted as coordinators and ensured that carers’ voices were kept central to the process. Study IV had a qualitative design, and data were collected through individual semi-structured interviews with 15 carers. Interviews were analysed using qualitative content analysis. The study focused on informal carers' experiences of online, co-designed support pro-gramme while being participants in a randomised controlled trial (RCT) that has the aim of studying the effects of engaging with the programme.  Results: The findings show that one in five diagnosed with HF and living with an ICD reported low/medium levels of social support and that these persons had higher odds of negative psychosocial outcomes. This un-derscores the value and importance of support from informal carers for the well-being of those with HF. The thesis focused on perceptions, development, and experiences of online support for informal carers. The findings suggest that a co-designed support programme has the potential to be usable and useful for carers considering the online format and its content. It may provide insights, preparedness, and validation in relation to being a carer of a person with HF. However, carers may have an ‘ambiguous stance’ towards the online format and going online for support may not be the preferred form of support for all carers.   Conclusion: A co-designed online support programme, when built on a trusted platform within a healthcare context, may be considered both usable and useful for carers. The online format and content also provide the potential to offer timely and adaptable support. The content, developed in a collaboration between carers and professionals, offers evidence-based, relevant information, thereby possibly avoiding seeming impersonal, which can also be beneficial. The programme acknowledges the intertwined lives of carers and those with HF, and its content reflects this, potentially also enhancing its perception as usable and useful for carers. Still, the potential of the support programme depends on carers being aware of its existence, or being made aware, and can further recognise its value. The support programme is considered to have the capacity to be relevant for a broad group of carers, and therefore efforts may be of importance to ensure it is accessed and utilised. However, it is also important to take into account that not everyone may be willing or able to go online for support, or may wish to stay in a caring role. Healthcare also needs to recognise this when offering support to carers and the online support may be regarded an option among several.