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.
| Identifer | oai:union.ndltd.org:LACETR/oai:collectionscanada.gc.ca:BVAU./4085 |
| Date | 11 1900 |
| Creators | Derman, Sarah Jane |
| Publisher | University of British Columbia |
| Source Sets | Library and Archives Canada ETDs Repository / Centre d'archives des thèses électroniques de Bibliothèque et Archives Canada |
| Language | English |
| Detected Language | English |
| Type | Electronic Thesis or Dissertation |
| Format | 3070045 bytes, application/pdf |
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