The co-design of an online support programme with and for informal carers of people with heart failure: A methodological paper.

AIM: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure. DESIGN: A co-design process built on core concepts and ideas embedded in co-design methodology. DATA SOURCES: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme. OUTCOMES: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal. CONCLUSION: Co-design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process. RELEVANCE TO CLINICAL PRACTICE: Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning opportunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel. REPORTING METHODS: Consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Both informal carers and content creators were involved in developing the support programme.

Perceptions of Information and Communication Technology as Support for Family Members of Persons With Heart Failure: Qualitative Study.

BACKGROUND: Heart failure (HF) affects not only the person diagnosed with the syndrome but also family members, who often have the role of informal carers. The needs of these carers are not always met, and information and communications technology (ICT) could have the potential to support them in their everyday life. However, knowledge is lacking about how family members perceive ICT and see opportunities for this technology to support them. OBJECTIVE: The aim of this study was to explore the perceptions of ICT solutions as supportive aids among family members of persons with HF. METHODS: A qualitative design was applied. A total of 8 focus groups, comprising 23 family members of persons affected by HF, were conducted between March 2015 and January 2017. Participants were recruited from 1 hospital in Sweden. A purposeful sampling strategy was used to find family members of persons with symptomatic HF from diverse backgrounds. Data were analyzed using qualitative content analysis. RESULTS: The analysis revealed 4 categories and 9 subcategories. The first category, about how ICT could provide relevant support, included descriptions of how ICT could be used for communication with health care personnel, for information and communication retrieval, plus opportunities to interact with persons in similar life situations and to share support with peers and extended family. The second category, about how ICT could provide access, entailed how ICT could offer solutions not bound by time or place and how it could be both timely and adaptable to different life situations. ICT could also provide an arena for family members to which they might not otherwise have had access. The third category concerned how ICT could be too impersonal and how it could entail limited personal interaction and individualization, which could lead to concerns about usability. It was emphasized that ICT could not replace physical meetings. The fourth category considered how ICT could be out of scope, reflecting the fact that some family members were generally uninterested in ICT and had difficulties envisioning how it could be used for support. It was also discussed as more of a solution for the future. CONCLUSIONS: Family members described multiple uses for ICT and agreed that ICT could provide access to relevant sources of information from which family members could potentially exchange support. ICT was also considered to have its limitations and was out of scope for some but with expected use in the future. Even though some family members seemed hesitant about ICT solutions in general, this might not mean they are unreceptive to suggestions about their usage in, for example, health care. Thus, a variety of factors should be considered to facilitate future implementations of ICT tools in clinical practice.

Perceived Social Support in Persons With Heart Failure Living With an Implantable Cardioverter Defibrillator: A Cross-sectional Explorative Study.

BACKGROUND: The links between chronic illness, psychological well-being, and social support have previously been established. Social isolation and loneliness have shown an increased mortality risk for those with heart failure (HF). Increasingly more people with HF are living with an implantable cardioverter defibrillator (ICD), but only a few small-scale studies have focused on social support in this population. OBJECTIVE: The aim of this study was to explore factors related to perceived social support in a large cohort of individuals with HF living with an ICD. METHODS: All eligible adult ICD recipients in the Swedish ICD registry were invited to participate in this cross-sectional study. For this analysis, those with HF and complete data on perceived social support were included (N = 1550; age, 67.3 (SD, 9.8) years; 19.5% female). RESULTS: Most reported a high level of social support, but 18% did not. In logistic regression, living alone was the greatest predictor of low/medium support. Lower social support for those living alone was associated with poorer perceived health status, having symptoms of depression, and experiencing low perceived control. For those living with someone, lower support was associated with female gender, symptoms of depression and anxiety, and less control. Heart failure status and perceived symptom severity were not related to the outcome. CONCLUSION: One in five participants reported low/medium social support. Our study underlines the complex relationships between perceived social support, psychological well-being and perceived control over the heart condition. Multiple aspects need to be taken into account when developing interventions to provide psychosocial support and optimize outcomes in this patient group.

Nurses' actions in response to nursing assistants' observations of signs and symptoms of infections among nursing home residents.

AIMS: To describe what nurses do during episodes of suspected infection in elderly nursing home residents and if these actions are linked to who is initiating an episode and whether the episode is considered an infection or not. DESIGN: Prospective descriptive study. Data were collected in 2008-2010. METHODS: Summarized and categorized documentation by nursing assistants and nurses was used for summative content analysis. RESULTS: Nurses' actions seem to be related to who initiated the episode and if the episodes are categorized as 'non-infection', 'possible infection' or 'infection'. Actions could be 'observation', 'screenings', 'engaged in waiting', 'follow-ups', 'nurse-prescribed actions', 'diagnosing', 'contacting the physician', 'carrying out an action prescribed by the physician', 'contacting an ambulance or arranging an emergency visit to the hospital' and 'prescribing screening'. As NAs often initiate episodes of suspected infection by observing changed conditions, it seems important to include the NA in the decision-making process as these observations could detect possible early signs and symptoms of infections.