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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
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.