"Counting on the Group"

Abstract

Awareness of the huge amount of work faced by relatives in caring for a person suffering from a loss of autonomy has led to research focusing on ways to ease the burden on informal caregivers. Among them, services and devices aimed at providing social support and fighting the isolation that may be caused by the caregiving tasks appear important. However, little is known about the social support informal caregivers actually value and look for in practice. To fill this gap, we conducted a multi-sited study, focusing on older informal caregivers, because they are numerous and have lower experience with technology. Our study highlights that being part of a group is a key element in helping informal caregivers to feel that they are not alone, continue leisure activities, learn from others and sustain participation in organized activities. Through this understanding, we discuss design opportunities in a sociotechnical approach complementing online and offline social support.

Connecting Those That Care

“…Alongside this, there is an additional sense of becoming the "care expert" over time, which can reinforce views that others do not necessarily understand or appreciate the role of carers [37]. It is also noted that carers experience problems with close friends and relatives not fully understanding a care receiver's situation or condition [42]. This can lead to hesitation around opening up to others, especially relatives or close friends [47].…”

“…However, while there is a large body of literature that speaks to the potential of online communities and social networking services to support carers, there are very few examples of what these might look like or how they may be used in practice. Furthermore, recent work has highlighted the importance of online activities primarily supporting offline, in-person activities between carers -such as coordinating and planning of group meet-ups and joint leisure pursuits [42]. Again, there is still a relative lack of understanding how these might be supported and, critically, the forms and channels of communication through which this support might be provided and desired.…”

“…Previous work has questioned how carers might, through technology, better manage their own health and wellbeing while still helping others [10,23]. Others have highlighted how technological social support for carers should be multi-dimensional, providing ways to find others caring for people in similar circumstances, to identify opportunities to seek and share advice, as well as emotional and informational support [41,42]. Furthermore, carers face specific challenges associated with seeking support in ways that are respectful and sensitive to the person they care for [47] and the complex patterns and routines inherent in caregiving [37].…”

“…Likewise, they can experience a lack of freedom and flexibility, with daily routines generally organised around care duties. Tixier and Lewkowicz [42] examine the social support practices of older carers, noting that they cherish opportunities to talk with others who may be living in similar circumstances. These opportunities to talk were seen as venues to share advice and knowledge with other carers, with informal meet-ups and support group sessions seen as particularly valuable.…”

“…These opportunities to talk were seen as venues to share advice and knowledge with other carers, with informal meet-ups and support group sessions seen as particularly valuable. However, the authors [42] also note that such groups can suffer from limited participation, perhaps again due to the routines and priorities surrounding the care of the family member or friend. The authors also highlight wider social and structural challenges-such as a lack of public places where those with disabilities or health conditions can visit, or a lack of state support for respite care-that further intensify these challenges.…”