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The experience of medical decision-making for adolescents with a progressive neuromuscular disease Derman, Sarah Jane

Abstract

Progressive Neuromuscular Diseases (PNDs) are relentless, debilitating, incurable diseases that cause nerves and muscles to atrophy. A large portion of the population who experience PNDs are adolescents. These adolescents progressively lose physical abilities and increasingly rely on caregivers at a time in their life when, paradoxically, normative adolescent development prescribes a move towards independence and autonomy. There is little research examining this experience from the adolescents’ perspectives. The purpose of this interpretive phenomenology study was to understand the experience of adolescents with PNDs when making decisions in relation to their health. Data collection consisted of 10 semi-structured interviews with 5 adolescents, 16-19 years of age, who were living with a PND (two interviews with each of the 5 participants). These interviews lasted an average of 60 minutes. Data were analysed using interpretive strategies, including the development of themes using exemplars, and paradigm cases. Findings revealed that the adolescents separated health decisions into two distinct categories, Big and Small, based upon level of perceived risk and physician involvement. Big referred to high-risk decisions, included physicians, and involved a medical/surgical procedure or intervention. Small referred to lower risk decisions, did not include physicians, and involved personal care. An expert emerged with each category of decision. In Big Decisions, the physician was perceived as the expert who made recommendations, provided information, and introduced the decision. In Small Decisions, the adolescent perceived himself as the expert. With Big Decisions, the physician expertise was typically respected, and the recommendations were followed. With Small Decisions, parents typically respected adolescent expertise. However, the adolescents commonly experienced not having their expertise respected by health professionals. In the context of Big and Small decisions, the theme Joint Ownership captured the sense that with the progressive loss of abilities and resulting dependence, the physical disability and illness were not experienced solely by the adolescent but by the adolescent and his parent(s). As the parent(s) and adolescent shared these experiences, the decisions, ownership of the physical body, and the responsibility for the care of the body also became shared. The findings suggest that health care professionals need to include the adolescents in the Small Decisions, and also acknowledge that adolescents may desire parental involvement in Big Decisions.

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Attribution-NonCommercial-NoDerivatives 4.0 International

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