Despite a growing awareness of the importance of support for carers who combine paid work with care of an older relative, so called ‘working carers’, there remains a lack of empirical knowledge about more innovative ways to support this largest group of carers of older people. Information and Communication Technologies (ICTs) are becoming more readily available. As a result, ICTs have made it feasible to offer working carers more targeted forms of support.

This thesis aimed to gain an understanding about support for working carers of older people via the use of ICT.

An integrative literature review was conducted to explore and evaluate the current evidence base concerning the use of ICT-mediated support for working carers (I). Content analysis of qualitative data was used to describe nursing and support staff’s experiences of using web-based ICTs for information, e-learning and support of working carers (II). Content analysis was also used to describe working carers’ experiences of having access to a web-based family care support network provided by the municipality (III). Descriptive statistical methods were used to analyse survey data which focused on the types of support received and how they were valued by working carers, with a focus on ICT support (IV).

Findings highlighted that ICT mediated support provided working carers with the means to manage their caring situation, via the provision of information, e-learning and education, in addition to practical assistance and emotional and/or physical respite from caregiving. In this way, working carers felt empowered in their caring situation by feeling more competent and prepared in their caring role and by strengthening their self-efficacy and positive self-appraisal of their situation. Carers were provided channels to share their frustrations and burdens via forums for emotional and social support between working carers, caring professionals, and other peer carers. This led to working carers feeling less burdened by their caregiving role and it helped promote their wellbeing. Further, carers were helped in some instances to balance work and care. As a result caregiving activities conflicting with work obligations were then lessened.

In contrast, when ICT mediated support was neither provided in a timely fashion or in accordance with individual carers’ needs and preferences, then it was perceived by them to be unimportant. Cross-sectional data revealed that take-up of support services was low suggesting that unmet support needs may be inflated by work-care conflicts. For carers with lower digital skills, the additional time needed to learn to use ICTs was a further barrier.

Overall, ICT mediated support acted as a complementary form of support for working carers. Measures to overcome dis-empowering aspects of this innovative from of support are needed to avoid working carers’ deprioritizing their own support needs and also to avoid possible digital exclusion from the current information society.

How best to support working carers is being paid increased attention across Europe and internationally. This article examines a largely unexplored area within the empirical literature, namely, information and communication technology-mediated support for working carers of older people. Using an integrative review methodology to draw on both quantitative and qualitative data, 14 studies were identified. Themes included making work–life balance easier, reducing the burden of caregiving and promoting well-being. Factors to consider in the design, implementation and evaluation of innovative support solutions for working carers are put forward. However, a lack of longitudinal studies and biased samples warrants further investigation.

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.

BACKGROUND:

Family care support services have mainly focused on older spousal carers of older people and have largely overlooked working carers, whom combine paid work with informal/family care responsibilities. Recently, however, information and communication technology (ICT) systems have been identified as a potentially flexible way of supporting working carers.

AIM:

The aim of this study was to describe nursing and support staff's experiences of using ICT for information, e-learning and support of working carers of older people.

DESIGN:

The study employed a descriptive, qualitative approach conducting a qualitative secondary analysis of two original data sets. In total, seventeen professional staff members from two municipal family carer support units in Sweden that had implemented ICTs were interviewed using a semi-structured interview guide consisting of open-ended questions.

METHOD:

Two data sets were merged using latent qualitative content analysis.

FINDINGS:

Secondary analysis produced three subthemes and an overall theme, a virtual road as a carriageway for the support of working carers, consisting of both enabling and hindering aspects in family support. This theme provides access points in both directions and is based on caring instruments that enable nursing staff's support role. The staff's sustainability and ability to support is influenced by caring opportunities and barriers.

CONCLUSIONS:

The findings suggest the ICTs to be flexible structures that provided nursing staff with a means and method to support working carers of older people. To overcome barriers to its use, measures to optimise support for working carers and the older person are needed.

IMPLICATIONS FOR PRACTICE:

The use of ICTs provides nurses with a means to offer support to working carers of older people and enables carers to be informed, to learn and to share their burdens with others when caring for an older family member.

BACKGROUND: Working family carers are an important resource for the care of older people but can experience negativepressures without support.

OBJECTIVE: This study examined the perceived value of forms of support and the level of receipt of valued forms of supportamong Swedish working carers, with a focus on information and communication technology (ICT)-mediated support.

METHODS: A convenience sample (N = 129) of working carers caring for an older (> 65 years) relative completed a webbasedquestionnaire that addressed: caring characteristics; work-care conflict; and valued and received forms of support.

RESULTS: Overall non-ICT forms of support were the most highly valued, while receipt of valued support was low: on averageonly 16.9% of participants who valued ICT-mediated forms of support received such support, while the figure was only slightlyhigher (23.4%) for non-ICT forms of support. Higher levels of work-care conflict were associated with higher perceived value ofsupport for 13 out of fourteen forms of support.

CONCLUSIONS: The findings suggest that ICT-mediated and non-ICT forms of support should be regarded as complementary,while the low level of receipt of valued forms of support could indicate high levels of unmet need in working carers. Implicationsfor further research and policy on working carers are considered.

Mealtimes are important events in care homes for physical and social well-being. However, residents usually have little input concerning meal timings, what food is offered, and how it is served. This integrative review explored mealtime interventions and their outcomes in care homes related to the Five Aspects Meal Model (FAMM). Research articles published 2010–2021 were searched for in ASSIA, CINAHL, PsycINFO, PubMed, and SveMed+ and resulted in 13 articles focusing on interventions. The analysis was based on the aspects of FAMM: room, meeting, product, management control system, and atmosphere. The result shows that even though interventions specifically focused on one aspect, they often evaluated outcomes related to several aspects. Different aspects can work together to foster effective mealtimes. FAMM eased to visualise the usefulness of mealtime interventions from a broad perspective and can be a useful tool for assessing and improving mealtime situations in clinical practice.

Purpose In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers' views and experiences of involvement in research and development (R&D) work. Design/methodology/approach A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations. Findings Core findings included carers' discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy. Research limitations/implications - Limitations included the relative lack of male carer participants and the convenience sample. Practical implications - Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement. Originality/value There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/significant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that affects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers’ perceived motivations and obstacles to become involved in research.

Methods: A cross-sectional survey design was adopted, using first-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were either aged 60+ years themselves or were caring for someone who was aged 60+ years.

Results: Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic significantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: ‘family motivation’ and ‘the greater good motivation’. These, according to our results, almost equally valued dimensions, described the differing reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men.

Conclusion: Our study contributes with new knowledge of informal carers’ perceived motivations and obstacles regarding carer involvement in research. Paying attention to the differing motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact. IRRID (International Registered Report Identifier): RR2-10.2196/17759.

In Sweden, increasingly the care of older people is carried out by informal/family carers. That is, family members- adult children and spouses, but also relatives and friends. In the move towards people-centred, integrated care systems, there is a growing argument for carers to be seen as partners in care alongside the person they are caring for and health and care staff. Whilst there is an increasing awareness of carers’ role within service systems and their own needs for support, their involvement in research has not been systematically explored.   One of the university nodes within the UserAge research programme, focuses on this theme.

 This presentation will examine recent research to create a national carer strategy in Sweden. In particular, to examine carers’ involvement during the research and development (R&D) process. An overview of the initial stages of the design process will be given drawing on the theoretical foundations for the work with reference to the temporal model of family caring and the carer as expert model.  The presentation will focus on findings from a  qualitative study (n=12) that explored how carers perceived R&D work and their own experiences of being involved in the development of a national carer strategy. Interview participants were purposively selected from those carers that participated in focus group interviews conducted in the earlier design phase. Main findings include the challenges and benefits of carer involvement in research and their aspirations and concerns regarding their involvement in research generally, and with regards to the national carer strategy.

 The discussion will examine the level of carers’ involvement and the significance of their involvement in the co-creation process of the national carer strategy. Concluding comments will highlight that genuine carer involvement in research also demands a high level of engagement from involved researchers and policymakers during the entire process.

Background: Public involvement in health and social care research is increasingly prioritized by policy-makers and research funders. Often, the impact of the involvement is described in terms of how it has contributed to the research outcomes and how it has affected the involved members of the public. There is a dearth of studies reporting from the perspective of researchers themselves of having involved members of the public in their research. Nevertheless, there is a general expectation for researchers to accept and embrace public involvement in research. This study aims to explore researchers' views of involving informal carers in health and social care research. Methods: Eleven individual in-depth interviews with researchers in the fields of social work, caring science, health science and medical science constituted the dataset of this qualitative study, inspired by discourse psychology. Results: The qualitative data analysis resulted in two interpretative repertoires describing researchers' views of involving informal carers in research, "Philosophy of Science " and "Personal relationships and growth ". Both repertoires need to be recognized; however, as of today, the Philosophy of Science repertoire is more acknowledged, while the second repertoire describing empathy, relationships and emotions may be viewed as the researcher being "unprofessional ". Further, the findings highlighted the dual perspective of being a researcher and a carer as creating opportunities for growth on the part of the researcher, on both a professional and a personal level. Conclusions: Researchers and their research work would benefit from acknowledging, discussing and reporting both interpretative repertoires in their publications, as well as recognizing the benefit of dialectal positions, for example, having a dual perspective as both a researcher and an informal carer.

Patient and public involvement is a way of ensuring that research and practices are more responsive to their target groups. This study, inspired by discourse psychology, explores the knowledge contributions of informal carers who participated in group meetings to co-create a support intervention. Findings highlight that carers’ knowledge is complex, including more than practical caring experiences. Acknowledging carers’ knowledge contributions and involving a heterogeneous sample of carers are key considerations for patient and public involvement in research; otherwise, there is a danger of establishing risks of injustice. Accepting the multifaceted knowledge of carers could increase the validity of research and the relevance of interventions developed.

Background and aims There is a growing demand for health and social care services to provide technology‐mediated interventions that promote the health and well‐being of older people with health or care needs and of their informal carers. The objectives of this study were to scope and review the nature and extent of prior intervention studies involving ambient assisted living technology‐mediated interventions for older people and their informal carers, and how and in what ways (if any) the goals and aims of these interventions reflected the domains of the World Health Organization framework for healthy ageing.

Methods We conducted a scoping review. Data were collected between June and October 2018 with an updated search in October 2020. A total of 85 articles were eligible for inclusion.

Results Nine categories described the aims and content of the included studies. The healthy ageing domain “Ability to meet basic needs” was mirrored in four categories, whereas “Ability to contribute to society” was not addressed at all.

Conclusion The ways in which domains of healthy ageing are mirrored suggest that there is an emphasis on individual factors and individual responsibility, and a lack of attention given to broader, environmental factors affecting healthy ageing. Only a few of the studies used a dyadic approach when assessing health outcomes concerning older people and their informal carers.

The general discourse in health and social care policy purports digital technology as necessary to meet growing demands for long-term care and health care as a result of an ageing population. This needs critical investigation since public policy influences people's health and wellbeing. This study aims to interrogate critically what we call the ‘digital technology solution’ discourse in local Swedish health and social care policies. The main concern of our analysis is the discursive constructions of older people and their informal carers and how the concept of health is constructed. A discourse analysis was conducted of 61 local policy documents using the ‘What's the Problem Represented to Be’ method. Our analysis revealed that so-called ‘e-health strategies’ were rarely concerned with health. Health was often referred to as an activity and seen as a means to achieve independence among older people. The norm advocated independence, with the responsibility placed upon the older person, supported by digital technology. Informal carers were constructed as a resource within an older person's environment and largely taken for granted. We argue that the digital solution discourse ignores older people's agency and capacities as contributors to society, not least with regards to being providers of informal care.