Informal care and the self-management partnership: implications for Australian health policy and practice

Essue, Beverley M; Jowsey, Tanisha; Jeon, Yun‐Hee; Mirzaei, Masoud; Pearce-Brown, Carmen; Aspin, Clive; Usherwood, Tim

doi:10.1071/ah09795

Cited by 35 publications

(56 citation statements)

References 27 publications

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“…The alignment of individual and group objectives and priorities involves balancing the objectives of illness management with other valued social roles, such as being a partner, parent, child, friend, colleague [24,27,45]. It involves managing the concerns, demands, and expectations of network members, around food and medication, and around adapting to existing and new roles that network members perform, including being a home help, lifestyle coach, advocate, technical care manager and health information interpreter [21,24,35]. Negotiations about these roles and functions can take different forms, for example, parents with a LTC might demand lifestyle changes from their children through concern over them developing the condition in the future [36].…”

Section: Resultsmentioning

confidence: 99%

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

et al. 2014

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BackgroundThere is increasing recognition that chronic illness management (CIM) is not just an individual but a collective process where social networks can potentially make a considerable contribution to improving health outcomes for people with chronic illness. However, the mechanisms (processes, activities) taking place within social networks are insufficiently understood. The aim of this review was to focus on identifying the mechanisms linking social networks with CIM. Here we consider network mechanisms as located within a broader social context that shapes practices, behaviours, and the multiplicity of functions and roles that network members fulfil.MethodsA systematic search of qualitative studies was undertaken on Medline, Embase, and Web for papers published between 1st January 2002 and 1st December 2013. Eligible for inclusion were studies dealing with diabetes, and with conditions or health behaviours relevant for diabetes management; and studies exploring the relationship between social networks, self-management, and deprivation. 25 papers met the inclusion criteria. A qualitative metasynthesis was undertaken and the review followed a line of argument synthesis.ResultsThe main themes identified were: 1) sharing knowledge and experiences in a personal community; 2) accessing and mediation of resources; 3) self-management support requires awareness of and ability to deal with network relationships. These translated into line of argument synthesis in which three network mechanisms were identified. These were network navigation (identifying and connecting with relevant existing resources in a network), negotiation within networks (re-shaping relationships, roles, expectations, means of engagement and communication between network members), and collective efficacy (developing a shared perception and capacity to successfully perform behaviour through shared effort, beliefs, influence, perseverance, and objectives). These network mechanisms bring to the fore the close interdependence between social and psychological processes in CIM, and the intertwining of practical and moral dilemmas in identifying, offering, accepting, and rejecting support.ConclusionsCIM policy and interventions could be extended towards: raising awareness about the structure and organisation of personal communities; building individual and network capacity for navigating and negotiating relationships and CIM environments; maximising the possibilities for social engagement as a way of increasing the effectiveness of individual and network efforts for CIM.

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Section: Resultsmentioning

confidence: 99%

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

et al. 2014

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“…The shift to the home setting changes the nature of rehabilitation itself (see, for example, Pollack and Disler 2002) from a specialised medical practice to an endeavour delivered by committed but often untrained carers, who may (or may not) receive some support from community-based allied health professionals. Rehabilitation also changes with the site shift from an enterprise that is carefully monitored and benchmarked (Gubrium et al 2003) to one that is self-directed and self-managed through lifestyle adjustments and home-based activities (Dow 2004;Essue et al 2010;Pritchard et al 2015). These care activities are often performed by spouses, and can have a large impact on their lives, as they themselves deal with uncertainty, grief over the lost past, and changes in various roles within and outside the family (Bäckström and Sundin 2009;Bendz 2003;Greenwood et al 2009;Lawrence and Kinn 2013;McCarthy and Bauer 2015;Quinn et al 2014).…”

Section: Introductionmentioning

confidence: 99%

Orchestrating home

Karasaki¹,

Warren²,

Manderson³

2017

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The private space of the home is an important site of health care in most industrialised countries, and rehabilitation following intensive in-hospital treatment largely takes place in domestic settings. Home in this context is implicitly understood by individuals affected by illness (people with illness, family members, friends, carers), health care providers, and policy makers as an a priori entity that naturally provides continuity and stability. This takes for granted that family carers will maintain both therapeutic activities and the sense of 'being at home' -and all of the accompanying emotional dimensions -within the home environment. Drawing on ethnographic research with relatively young spousal carers in Victoria, Australia, we explore how the reconstruction of home as a site for post-stroke recovery changed the experiences and meanings given to the idea of home. Home as a therapeutic place depended on constant orchestrating work that reconfigured the physical, symbolic, and practical elements of home. This was not a straightforward or singular process, as tensions arose in trying to integrate the new, post-stroke therapeutic landscape and pre-stroke conceptualisations and lived realities of home life.

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“…Increased dependence among spouses through undertaking a caring role sometimes resulted in resentment and marital stress. 7 Carer self-neglect and conflict arising between the carer and the care recipient added further tension to the already demanding situation of caring for a family member. SCIPPS found that some policies designed to support carers did not actually meet their goal.…”

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confidence: 99%

“…SCIPPS found that some policies designed to support carers did not actually meet their goal. 7 One example of this is the Carer Eligibility and Needs Assessment (Revised), which overtly assesses the carer's needs arising through the caring process. However, the assessment is based on the care recipient's needs in the first instance and therefore continues to overlook the carer's needs.…”

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confidence: 99%

“…Participants with multiple chronic illnesses, particularly older participants and migrants, were frequently overwhelmed by the requirements of self-management, and experienced increased confusion and additional costs related to self-management. [5][6][7] Economic hardships associated with self-management of multiple chronic illnesses arose through the accumulation of related out-of-pocket expenses. 6,8 A single chronic illness, type two diabetes mellitus for example, might require lifestyle changes such as dietary modification and exercise, neither of which are covered by financial rebates, and might not of themselves cause undue financial pressure.…”

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confidence: 99%

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