Myotonic dystrophy Type 1: exploring the health care experiences of people living with DM1. A Research Protocol

Abstract

Abstract This article outlines a research protocol for investigating the health care experiences of people living with Myotonic Dystrophy Type 1 (Dytrophia Myotonica; DM1). Introduction DM1 is a neuromuscular condition of highly variable presentation across the lifespan. It is a complex and variable condition which impacts many body systems. Care consensus, clinical experience and scientific genetic findings dominate much of the literature. Findings from the literature indicate health care input from multiple disciplines is recommended to help identify and prevent or minimise disability and early mortality. It is these recommendations for intense health care input and the perceptions people living with DM1 have of their health care that have prompted this enquiry. Objectives Investigate the experiences of health care from 3 different groups: people living with DM1, their family members, carers or support people, and health care providers. Potentially illuminating what we as nurses and health care providers do well or not so well. Intended methods Guided by Merleau-Ponty’s phenomenology of perception and triangulate these gathered experiences to ascertain if there is convergence or divergence between health care experiences of recipients and providers. This research will utilise a qualitative approach with methodology drawn from phenomenology. Semi-structured Interviews will be conducted with 3 different groups to gain insight into perceptions, experiences, and outcomes of health care interactions. People living with DM1, family members, carers and friends and health professionals providing services and care for people living with DM1 will be invited to participate.