The experiences of mothers and young people with neuromuscular disorders

: Pushing back and pulling away through transition

Abstract

The number of young people with neuromuscular impairments reaching adulthood has
increased due to advances in medical science. As young people with progressive degenerative
neuromuscular conditions continue to live longer than previously anticipated, their needs for
services, and opportunities to live the extended period of their lives in ways that are
meaningful for them need to be met, with primary, secondary and respite services in place to
meet the needs of a growing and emerging group of young adults. Qualitative research about
the experiences of these young people is limited. The experiences of the mothers of children
and young people neuromuscular impairments is currently underrepresented in the literature.

A study using case study methodology was undertaken to explore the experiences of five
mothers of children: and five young adults with neuromuscular conditions. Eight cases were
developed using a range of data sources including: one-to-one interviews with five mothers
and one young adult, online open-ended questionnaire responses from young people, artefacts
such as photos and video clips held by mothers, and email correspondence with participants.
Each of the cases are presented as a journey, for the mothers starting with the antenatal and
birth stories, followed by caring for their children in early and later childhood years and for
the young adults’, their journeys through adolescence and early adulthood. Data were also
triangulated deductively using three theories: identity theory; Transition theory; and the
ABC-X Theory of Family Stress and Coping.

The findings showed that being the mother of a child with a neurological disorder had a
significant impact on their identity as mothers. Within-case themes for the mothers were the
journey to parenthood; parental hopes, dreams, and aspirations; the importance of family and
social support; and facing the future and continuity of care. Identity, as a disabled person,
coloured the lives of the young adults, although they were each determined to live as normal
a life as possible. For young people, the immediacy of short-and medium-term goals were
important. The young people were aspirational for their futures with each identifying clear
educational and career goals. The mothers were determined that their child’s potential would
be maximised, their goals reached, and that their children would not be held back by
budgetary constraints or limitations in service provision. The key theme to emerge in the
cross-case analysis was the pushing away and pulling back through transition; to and from
independence for the young people approaching and entering early adulthood, and for the
mothers pushing their child to independence whilst also pulling them back due to
dependency; becoming a mother of a disabled child and an expert parent; and holding onto
the child and mutual dependency.

The original contribution this research makes to the field, is in expanding understanding of
the maternal perspectives of raising a child with a neuromuscular impairment and how
identity theory can be used to conceptualise these experiences; and of the voices of young
adults growing up with a neuromuscular impairment of their hopes and aspirations for their
academic, career and personal hopes of the future.

Date of Award	2020
Original language	English
Awarding Institution	University of Brighton
Supervisor	Chris Cocking (Supervisor), Kay De Vries (Supervisor) & Emily McWhirter (Supervisor)