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

CAREGIVER education; FAMILIES; DECISION making; GROUNDED theory; HOME nursing; INTERVIEWING; RESEARCH methodology; PATIENT education; PROBLEM solving; RESEARCH funding; DATA analysis; HEALTH literacy; DATA analysis software; EDUCATION

Background With more care taking place in the home, family carers play an important role in supporting patients. Some family carers undertake technical health procedures generally managed by health professionals in hospital settings (e.g. managing a tracheostomy or enteral feeding). Aim To explore how family carers learn to manage technical health procedures in order to help health professionals better understand and support this process. Design and methods A grounded theory study using data from interviews with 26 New Zealand family carers who managed technical health procedures including nasogastric or gastrostomy feeding, stoma care, urinary catheterisation, tracheostomy management, intravenous therapy, diabetes management and complex wound dressings. Most (20 participants) were caring for their child and the remaining six for their spouse, parent or grandparent. Following grounded theory methods, each interview was coded soon after completion. Additional data were compared with existing material, and as analysis proceeded, initial codes were grouped into higher order concepts until a core concept was developed. Interviewing continued until no new ideas emerged and concepts were well defined. Findings The core concept of 'wayfinding' indicates that the learning process for family carers is active, individualised and multi-influenced, developing over time as a response to lived experience. Health professional support was concentrated on the initial phase of carers' training, reducing and becoming more reactive as carers took responsibility for day-to-day management. Conclusion Wayfinding involves self-navigation by carers, in contrast to patient navigator models which provide continuing professional assistance to patients receiving cancer or chronic care services. Wayfinding by carers raises questions about how carers should be best supported in their initial and ongoing learning as the management of these procedures changes over time. [ABSTRACT FROM AUTHOR]

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