Experiences of young New Zealanders with progressive neuromuscular conditions : quality of life and mental health : a thesis presented in partial fulfilment of the requirements for the degree of Master of Science in Psychology at Massey University, Auckland, New Zealand

Abstract

Progressive Neuromuscular conditions (PNMC) are rare and chronic disabilities that affect a small portion of New Zealanders. It is known that quality of life (QoL) is reduced for individuals with PNMC in the physical domain. Beyond this, results are inconsistent as to in what specific ways PNMCs impact other QoL domains. A qualitative methodology, Interpretative Phenomenological Analysis, was employed to describe young New Zealanders’ experiences of how living with a progressive neuromuscular condition (PNMC) impacts their quality of life and mental health. Seven participants, ranging in age from 18 to 24, were interviewed. Five themes were identified. Living with a PNMC implies living with a condition that is constantly present, meaning this is both a part of normal life for participants but it also brings forth the uniqueness of living with a rare condition. The uncertainty of these conditions in terms of future wellbeing brings forth mental strain for participants. Participants experience the world as an ‘Other’, meaning they are aware of their position in society as different to those who do not have an impartment. Participants’ acceptance of their condition comes in many different ways, and is aided through the support they receive in their relationships. The results provide insight into how life is like for young New Zealanders who live with PNMCs. This awareness of how the world is for them becomes valuable knowledge as it can inform how to help individuals in their day-to-day lives.