With good intentions: complexity in unsolicited informal support for Aboriginal and Torres Strait Islander peoples. A qualitative study

Abstract

BackgroundUnderstanding people's social lived experiences of chronic illness is fundamental to improving health service delivery and health outcomes, particularly in relation to self-management activity. In explorations of social lived experiences this paper uncovers the ways in which Aboriginal and Torres Strait Islander people with chronic illness experience informal unsolicited support from peers and family members.MethodsNineteen Aboriginal and Torres Islander participants were interviewed in the Serious and Continuing Illness Policy and Practice Study (SCIPPS). Participants were people with Type 2 diabetes (N = 17), chronic obstructive pulmonary disease (N = 3) and/or chronic heart failure (N = 11) and family carers (N = 3). Participants were asked to describe their experience of having or caring for someone with chronic illness. Content and thematic analysis of in-depth semi-structured interviews was undertaken, assisted by QSR Nvivo8 software.ResultsParticipants reported receiving several forms of unsolicited support, including encouragement, practical suggestions for managing, nagging, growling, and surveillance. Additionally, participants had engaged in 'yarning', creating a 'yarn' space, the function of which was distinguished as another important form of unsolicited support. The implications of recognising these various support forms are discussed in relation to responses to unsolicited support as well as the needs of family carers in providing effective informal support.ConclusionsCertain locations of responsibility are anxiety producing. Family carers must be supported in appropriate education so that they can provide both solicited and unsolicited support in effective ways. Such educational support would have the added benefit of helping to reduce carer anxieties about caring roles and responsibilities. Mainstream health services would benefit from fostering environments that encourage informal interactions that facilitate learning and support in a relaxed atmosphere.

The influence of social networks on self-management support: a metasynthesis

“…These can have both positive and negative impact [26,45]. When poor outcomes are observed in other network members this can lead to the seeking of support from elsewhere in order to prevent similar outcomes [21,24].…”

They've given me that many tablets, I'm bushed. I don't know where I'm going

“…Yarning is compatible with Indigenous cultural process and enables the telling of stories. 8,9 The focus groups provided a forum for the sharing of information about medications as well as the opportunity to collect information about patient perceptions and experiences. Focus groups were conducted by the first author, a pharmacist.…”

Identifying and understanding the health and social care needs of Indigenous older adults with multiple chronic conditions and their caregivers: a scoping review

“…Five were conducted in Australia [1,2,8,26,28], while four were based in North America; including Hawai'i [3,27], Northwestern Ontario [9], and the United States [6]. Studies examined the complexities, experiences and health care needs of aging Indigenous populations [1-3, 9, 26], identified the needs of older Indigenous adults and their caregivers [8,27,28], and included the rates of unmet assistance needs among older Indigenous populations [6]. Data collection methods included one-on-one interviews [1-3, 6, 8, 9, 26, 28] and focus groups [8,9,26].…”

“…Studies examined the complexities, experiences and health care needs of aging Indigenous populations [1-3, 9, 26], identified the needs of older Indigenous adults and their caregivers [8,27,28], and included the rates of unmet assistance needs among older Indigenous populations [6]. Data collection methods included one-on-one interviews [1-3, 6, 8, 9, 26, 28] and focus groups [8,9,26]. Eight of the studies included purposive sampling [1-3, 8, 9, 26-28] and one used random sampling [6].…”

“…These efforts are aimed at recovering and preserving the well-being, independence, and autonomy of Indigenous peoples. They also aim to understand the health and social care needs for older Indigenous people [1,3,8,9]. This understanding led to the use of an Indigenous Determinants of Health (IDH) theoretical framework that is not purely 'social' in nature and does not overlook the ongoing impact of colonialism [7,10,11].…”