The ‘wayfinding’ experience of family carers who learn to manage technical health procedures at home: a grounded theory study

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Internationally since the 1970s, and in New Zealand from the 1980s, there has been a shift towards care in the home rather than in hospital 1, either self‐managed by patients or with assistance from family carers. A number of factors have driven this shift, including ageing populations and rising numbers of people living with chronic conditions, improved survival of premature babies and those with congenital impairments, the reduction of institutional care for disabled people and healthcare funding constraints 4. In addition, the development of sophisticated, fail‐safe medical technology has enabled more complex care to be managed at home, which has necessitated training patients or carers to manage procedures such as renal dialysis or enteral feeding at home 6. Care may be provided for children, partner, ageing parents or other family members, as required.
The literature about specific procedures (e.g. a tracheostomy) contains descriptions of training programmes by health professionals 7 and some reports about the experiences of carers (e.g. 9), but the process of learning to manage such procedures has not been well researched or theorised from the carers' perspective 4. In New Zealand, teaching family carers is largely a nursing role. There is no national policy or guidance regarding what procedures can be managed by family carers or the training and support they should receive. The current New Zealand Carers' Strategy Action Plan for 2014–2018 notes ‘carer learning and well‐being is a high priority’, with action 2.1 being ‘Develop and deliver learning and wellbeing resources’ and 3.1 ‘Build on the development of an online information centre for carers (CarersAir)’ (13: p. 14, 18, 20). Resources are available at www.carersair.net.nz, but apart from some information around managing continence needs, these do not address complex procedure training.
In the study reported in this article, we sought to explicate the learning process and experience of carers who manage technical health procedures at home. In the remainder of this article, we provide an overview of existing literature about the experiences of carers managing technical health procedures, explain the purpose of our study and its methodology (grounded theory) and present the core concept of ‘wayfinding’. The implications of this are then discussed.
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