Wayfinding: A grounded theory about family carers learning to manage technical health procedures at home

Abstract

Advances in medical care and technology, population ageing, policy shifts towards community care and family preferences for home over institutional settings are all contributing to increased demands on family carers. Beyond housework or personal care, some carers take responsibility for ‘technical health procedures’ ranging from changing wound dressings to managing a tracheostomy. There has been limited research about carers’ experiences with such roles or how professionals teach and support carers who manage these procedures.

The objectives of this research were to develop theory about how families learn to undertake technical health procedures and their experiences of managing these procedures at home. Grounded theory methodology was used, with data drawn from interviews with 26 family carers caring for their child (20), partner (3), parent or grandparent (3). Technical procedures included nasogastric, gastric or jejunal feeding, intravenous or subcutaneous medication, urinary catheters, bowel stoma care, tracheostomy management and peritoneal dialysis. In addition, 15 health professionals involved with teaching family carers were interviewed. An overall theory of ‘wayfinding’ has been developed to explain the experience of carers who learn to manage technical health procedures. Wayfinding was motivated by wanting good care and a good life for the care recipient. It was an active process, utilising health professional and other sources of learning and adapting them through lived experience to unique home situations. Wayfinding comprised two processes, the first of which was a learning journey. This had three phases: initial concentrated professional teaching; taking responsibility and continuing learning as a novice carer; and ultimately, with time and experience, becoming an expert carer. Through this process, relationships between carers and health professionals could change from learner:teacher to the mutual recognition of expertise. Alongside the learning process, a second process of embracing care described the way family carers experienced and responded to taking on the role of managing technical health procedures. The spectrum of embracing care consisted of five positions which carers adopted and moved between, namely accepting embrace, resisting embrace, reluctant embrace, relinquishing embrace and being overwhelmed by the caring role. Two factors which influenced carers’ movements between positions on this spectrum were whether or not they perceived the procedure benefitted their family member and the availability or absence of appropriate support for managing it. Managing technical health procedures at home occurs in the context of family relationships and often with limited alternatives. The challenge for society and health services is to consider what level of caring should be expected of families and how carers can best be taught and supported in this important role.