Informal caring networks for people at end of life: building social capital in Australian communities

Rosenberg, John P.; Horsfall, Debbie; Leonard, Rosemary; Noonan, Kerrie

doi:10.1080/14461242.2014.999400

Cited by 54 publications

(37 citation statements)

References 40 publications

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“…Most health care services involve primary carers at best, highlighting the need for greater efforts to engage with and harness care networks . Developing skills among extended care networks may be especially important to support people in the final stages of terminal cancer, when exhaustion among primary carers is a common reason for admission to hospital . Upskilling extended care networks has potential not only to enable one‐off support but also to develop community capacity to repeat this role for other people in the future.…”

Section: Discussionmentioning

confidence: 99%

“…What little research is available on extended care networks suggests emotional support may be among their key contributions, with increasing significance towards the end of life. 26 While only 19% of carers reported providing emotional support as their sole contribution, we did not ask about the relative time spent on each type of care, so it may be that a much larger proportion provided emotional support predominantly.…”

Section: Discussionmentioning

confidence: 99%

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Health status in South Australians caring for people with cancer: A population‐based study

et al. 2019

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Objectives To compare physical and mental health status between cancer carers versus non‐carers in a population‐based sample and explore sociodemographic and caring characteristics associated with poor carer health status. Methods The South Australian Health Omnibus is a population‐based cross‐sectional survey. Carer status was self‐defined by participants as having cared for someone with cancer in the last 5 years. Health status was considered poor if it was 0.5 standard deviation lower than Australian norms on the Medical Outcomes Study 12‐Item Short‐Form (SF‐12) physical and mental component summary scores (PCS and MCS). Regression analyses compared mean PCS/MCS between carers versus non‐carers, controlling for sociodemographic variables, and explored associations between poor health status and caring and support among carers. Results The weighted sample included 2962 people, of whom 374 (12.6%) were cancer carers and 1993 (67.3%) non‐carers. Carers had significantly worse PCS/MCS, controlling for sociodemographic variables, but did not differ significantly regarding proportions with poor health status. Carer characteristics associated with poor PCS and MCS included socio‐economic indicators and involvement in medication management. Assisting with household tasks was protective. Conclusions This population‐based study followed those previous ones in finding cancer carers to have poorer mean health status than non‐carers. However, differences were less pronounced than previously reported, likely because of the sample being drawn from a general rather than cancer service population and including past as well as current carers, as well as all cancer types and stages. Future longitudinal research is needed to identify factors that predict recovery post caring.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Health status in South Australians caring for people with cancer: A population‐based study

et al. 2019

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“…Previous research has indicated that rural communities have strong informal networks and connections that facilitate well‐being (Rosenberg et al . ). However, this is not unproblematic, and rural communities can also suffer from lack of privacy and an expectation of ‘stoicism’ (Davis et al .…”

Section: Introductionmentioning

confidence: 97%

“…Given much of the psychosocial supportive care in rural communities is informal; we considered this was a gap in the current literature and an important area for research. Previous research has indicated that rural communities have strong informal networks and connections that facilitate well-being (Rosenberg et al 2014). However, this is not unproblematic, and rural communities can also suffer from lack of privacy and an expectation of 'stoicism' (Davis et al 2003;Butow et al 2012;Gunn et al 2013).…”

Section: Introductionmentioning

confidence: 99%

Understanding receptivity to informal supportive cancer care in regional and rural Australia: a Heideggerian analysis

Pascal

Johnson

Dickson‐Swift

et al. 2015

Eur J Cancer Care (Engl)

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The concept of receptivity is a new way of understanding the personal and social factors that affect a person living with and beyond cancer, and how these factors influence access to formal supportive care service provision and planning. This article contributes to new knowledge through applying the concept of receptivity to informal supportive cancer care in regional Australia. Literature indicates that a cancer diagnosis is a life-changing experience, particularly in regional communities, where survival rates are lower and there are significant barriers to accessing services. Heideggerian phenomenology informed the design of the study and allowed for a rich and nuanced understanding of participants lived experiences of informal supportive cancer care. These experiences were captured using in-depth interviews, which were subsequently thematically analysed. Nineteen participants were recruited from across regional Victoria, Australia. Participants self-reported a range of stages and types of cancer. Significantly, findings revealed that most participants were not referred to, and did not seek, formal supportive care. Instead, they were receptive to informal supportive care. Understanding receptivity and the role of anxiety and fear of death has implications for partners, family, community members, as well as professionals working with people with living with and beyond cancer.

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“…Dying has become firmly located within health care systems, with the result that, for most people, the process of dying is medicalised, individualised, and institutionalised (Howarth, ). However, Kellehear () proposed Health Promoting Palliative Care (HPPC), which has a focus on social change (Rosenberg, Horsfall, Leonard, & Noonan, ), through developing strategies which provide education and social support, encourage interpersonal reorientation and the reorientation of palliative care services, and combat death‐denying health policies and attitudes ().…”

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confidence: 99%

Identity and the End‐of‐Life Story: A Role for Psychologists

Leonard¹,

Horsfall²,

Noonan³

et al. 2017

Australian Psychologist

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Objective Narrative approaches to identity, which conceptualise a person's identity as their life story, present a useful way for approaching support at end‐of‐life because they do not pathologise dying but rather recognise it is the final chapter of a life story. The construction of life stories is always a social process and could be supported by psychologists. Attention to issues of identity and relationships is beneficial for dying people and their carers and counteracts the medicalisation of dying. The Caring at End‐of‐Life Research Program identified the support necessary from family, friends, community, and professionals for people to die at home, which is the preference of over 80% of Australians. Identifying the current and potential role of psychologists is the present focus. Method Qualitative analysis of eight service provider focus groups (88 people), 13 focus groups with carers and their support networks (n = 84), and individual interviews with carers (n = 23), and community (n = 17) was conducted in urban and rural New South Wales and the Australian Capital Territory. Results End‐of‐life transition was achieved without loss of identity when relationships with people, places, and objects which sustained identity were maintained. Carers required knowledge, skills, and adjustments about which psychologists have expertise such as emotional work, supporting networks, resisting pressure from medical staff, and adjustment at death. However, no psychologists attended the service provider focus groups and carers identified only three psychologists among 58 service providers. Conclusion Psychologists could play a valuable role by recognising end‐of‐life as a major transition and assisting with identity maintenance through that time.

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Informal caring networks for people at end of life: building social capital in Australian communities

Cited by 54 publications

References 40 publications

Health status in South Australians caring for people with cancer: A population‐based study

Health status in South Australians caring for people with cancer: A population‐based study

Understanding receptivity to informal supportive cancer care in regional and rural Australia: a Heideggerian analysis

Identity and the End‐of‐Life Story: A Role for Psychologists

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