The experiences of working carers of older people regarding access to a web‐based family care support network offered by a municipality

Abstract

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.

Valued and received forms of support among Swedish working carers of older people: A descriptive study with focus on ICT-mediated support

“…the one-third of carers who indicated that they were unable to access support groups during the day due to work, the 40% who had no time to use carer support due to their work and care commitments, and the 25% that indicated a preference for anonymity when meeting other carers. ICTmediated forms of support would clearly have application for such carers, as also described by Andersson et al [21]. A preference for physical meetings with other carers rather than ICT-mediated meetings may be related to experiencing fewer digital skills or the view that communication is too impersonal when not involving synchronous interaction or physical contact [21].…”

“…These are increasingly recognized as innovative means to increase accessibility of, and flexibility in, support [20]. ICT-mediated support, such as support available via the Internet, has been proposed as a means to provide Swedish working carers with flexible access to information, psychosocial support, and learning opportunities, which would otherwise be difficult to obtain due to limited time while working and providing care [21,22]. Such forms of ICT-mediated support and social, peer-topeer, and emotional support have been reported to reduce carer burden [23,24] and stress [25][26][27].…”

Health Information Technology and Caregiver Interaction: Building Healthy Ecosystems

“…The computerization of patient health records and online access to readily available data enables the working ICGs to access information, receive psychosocial support from the professional counterpart and benefit from potential learning opportunities [45], but also brings into play the question of transparency. The main concerns of the formal CGs center on security and patient privacy and the ethics of processing and transmitting sensitive data outside the professional sphere; not only can this undermine the completeness, and hence usefulness, of the data transmitted to the ICG, but also can make the formal caregivers reluctant to share electronic data files with them [46].…”

“…Transparency of information flow is often impeded by fears over security and loss of privacy. A foundational concept of information sharing in healthcare is to avail patient health and biography information only to the authorized providers of care as concerns of confidentiality may be seen to outweigh benefits of quality of care [45]. Patient engagement and family caregiver access to portals may improve self-regulated disease management.…”

“…Provide secure messaging for communication among the patient care team [28]. Enable working ICGs to access information, receive support from professional CG and network transparently [45]. Adequate training and encouragement to motivate family carers to use technology-based support services [36].…”