An exploration of mothers' and fathers' views of their identities in chronic-kidney-disease management: parents as students?

摘要

AIM: To explore parents' views of their identities as they learn to manage their child's chronic kidney disease. BACKGROUND: Parents are expected to participate in management and usually learn necessary skills from the multidisciplinary team. Research highlights the importance of professionals defining parents' management roles in chronic disease; but little is known about parents' views on their own identities as the complex and dynamic process of teaching and learning unfolds around their child's condition. According to positioning theory, identity development is a dynamic and fluid process that occurs during interaction, with each person positioning themselves while simultaneously positioning the other person, yet this concept has not been considered in relation to parents' contributions to disease management. DESIGN: A longitudinal, grounded theory study conducted in a UK Children's Kidney Unit. METHOD: This paper focuses on one aspect of a larger study exploring family learning in disease management. Six mothers and two fathers of six children with a recently diagnosed chronic kidney disease participated in a total of 21 semi-structured interviews during the 18 months after referral to the unit. Interviews included discussion about the parts they played in relation to professionals during the management process. Findings were interpreted within a framework of positioning theory. RESULTS: Parents participated in teaching/learning/assessment that was both planned (involving allocated clinical lessons and tasks) and spontaneous (in response to current situations), to facilitate their participation. They positioned multidisciplinary team members as teachers as well as professionals, simultaneously positioning themselves as students as well as parents. CONCLUSION: Parents' clinical duties and obligations are not an automatic part of parenting but become part of the broader process of sharing disease management, this can lead to them assuming the additional identity of a 'student'. RELEVANCE TO CLINICAL PRACTICE: Involving parents in ongoing discussions about their positions in management may help promote their active and informed participation.