Learning to manage chronic renal disease : the experiences of children and families

Advances in health care have led to an increasing emphasis on family involvement in the day-to-day care of children with chronic renal disease, but if families do not become competent in this it can negatively influence the child's management. Research into the psychosocial implications of childhood chronic disease has been prolific in recent years, although relatively few studies have investigated the way that families learn about chronic disease management. However, a body of work is emerging in the human sciences around the premise that social engagement in communities of practice is a fundamental process by which people learn. Building on these lines of research this study, therefore, aimed to explore the way that children with chronic renal disease and their families learned to manage the condition, and to determine the impact of relationships between families and professionals on the learning process. Using grounded theory within a symbolic interactionist approach, data were collected and analysed in two phases (retrospective and prospective). Phase one aimed to uncover the issues that eight children and/or their parents identified as important in learning about the condition since diagnosis in the preceding four years. In phase two, a longitudinal approach (building on phase one analysis) involving six families and key professionals, allowed detailed exploration, over eighteen months, of learning events that arose following referral to a Children's Kidney Unit. A focus on learning by families as social participation in care was identified in the study. A novel, substantive theory, the social theory of learning in childhood chronic renal disease is proposed comprising three categories: the processes of assessing; interacting and synthesising. Assessing is the process by which families and professionals learn through assessing the disease course as well as each others' ability and social positioning. Interacting is the process whereby families and professionals learn through sharing knowledge, earning and maintaining trust and engaging jointly in decision making. Synthesising is the process whereby families' and professionals' learn through a new, shared understanding based on knowledge of each others' communities of practice, cultures and patterns of learning. The theory conceptualises family learning as: a two way process of interaction in developing an ongoing practice between family members and professionals; the influence of interpersonal as well as intrapersonal learning; and not only acquisition of skills but also the formation of identities in the context where the skills are learned. Three patterns of learning also emerged from the data (parallel, integrated and synthesised). These help to explain some of the differences and similarities between families' learning as they move through the chronic disease journey. This study develops and modifies Wenger's (1998) social theory of learning and Gibson's concept of participatory competence (1995) and contributes an innovative perspective to the growing body of knowledge around childhood chronic disease. Testing and further development of the theory and its use in child health is indicated