title: 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.
authors.affiliation: a Division of Nursing Research and Education, City of Hope.
authors.forename: Elaine
authors.initials: E
authors.lastname: Wittenberg-Lyles
authors.forename: Karla
authors.initials: K
authors.lastname: Washington
authors.forename: George
authors.initials: G
authors.lastname: Demiris
authors.forename: Debra Parker
authors.initials: DP
authors.lastname: Oliver
authors.forename: Sara
authors.initials: S
authors.lastname: Shaunfield
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003071:Cognition; D015928:Cognitive Behavioral Therapy; D005195:Family Relations; D005260:Female; D017051:Hospice Care / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D015205:Northwestern United States; D060756:Social Networking; D012944:Social Support; D013637:Tape Recording; D014741:Video Recording