Understanding Social Support Burden Among Family Caregivers

Abstract

Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision-making, family dynamics and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered.

The Social Convoy for Family Caregivers Over the Course of Hospice

“…The reduction in family networks, while statistically significant, was quite small (an average decrease of 0.12 family members) and could easily be explained by either loss of support from the patient due to increasing debility 17 , negative interactions with family members 16 , and/or the inability of distressed family caregivers to provide social support at a level comparable to what they provided in the past. 17 It is important to note that social relationships might ebb and flow over a longer period of time than four weeks, and that the findings from our exploratory study must be interpreted with caution.…”

“…The reduction in family networks, while statistically significant, was quite small (an average decrease of 0.12 family members) and could easily be explained by either loss of support from the patient due to increasing debility 17 , negative interactions with family members 16 , and/or the inability of distressed family caregivers to provide social support at a level comparable to what they provided in the past. 17 It is important to note that social relationships might ebb and flow over a longer period of time than four weeks, and that the findings from our exploratory study must be interpreted with caution. With that said,, these findings appear consistent with well-established theory on stress and family functioning, which indicates that family resources (e.g., family integration, adaptability) that are generally adequate to support family functioning may prove insufficient in the face of significant stressors 27 such as caregiving demands and the imminent death of a loved one.…”

“…In addition, as hospice patients become increasingly debilitated, their ability to provide social support to family members may decrease. 17 For example, a woman caring for her dying mother may be less able to rely on her mother for social support over time, particularly if her terminal condition and her ability to communicate clearly decline. Finally, family members of dying individuals may find themselves less able to provide support for one another because they are all experiencing distress associated with caregiving and with witnessing the decline of a loved one.…”

“…Thus, hospice family caregivers’ social convoys may be less capable of providing social support over time. 17 …”

Assistance and Support of Primary Caregivers through an eService Platform

“…Their importance lies in that they seek to promote the receptors' wellbeing and quality of life (elderly adult, family members, caregivers). Nonetheless, these face-to-face programs are often inaccessible to primary caregivers due to the demands of time and attention required by the elderly (Wittenberg-Lyles et al, 2014).…”