Parents' experience of physiotherapy for infants with Cystic Fibrosis: A qualitative study

Research output: ThesisMasters Thesis

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Abstract

Chronic disease in children has a substantial impact on the health and well-being of their parents and carers. This in turn may impact the health of the person that they are caring for. For parents of children with cystic fibrosis (CF), a chronic life-limiting genetic condition, the requirement to perform routine chest physiotherapy may contribute to poor health and well-being for parents and carers. This thesis sought to gain an understanding of parents’ experience of physiotherapy for CF during infancy, interpreting these experiences within the current context of CF and physiotherapy. A qualitative study was designed to answer the question: How do parents of infants with CF experience physiotherapy? The qualitative design of this study was guided by hermeneutic phenomenology methodology, with the intent to understand and interpret the participants lived experiences.
Thirteen parents of infants under 2 years of age, from 5 states within Australia, participated in in-depth, semi-structured interviews and completed a daily diary over the course of 5 days. The research revealed that for parents of infants with CF, performing physiotherapy independently at home was:
i) perceived to be an opportunity for the parent to positively impact their child’s health; and,
ii) a source of stress that resulted in explicit and deliberate sacrifice in order to prioritise physiotherapy treatment within the child and family’s life.
In regards to the physiotherapy consultation and the contact that the parent has with the physiotherapist, the research additionally revealed that:
i) parents have a preconceived idea of physiotherapy which generates negative expectations of the physiotherapy experience; and,
ii) the delivery approach of health professionals generates negative physiotherapy expectations and experiences, and influences the key message that parents take from the consults.
The findings of this research could support physiotherapists to understand the parent experience, and highlights opportunities for a more individualised approach to improve the experience of physiotherapy for parents of infants with CF
Original languageEnglish
QualificationMaster of Philosophy
Awarding Institution
  • Charles Sturt University
Supervisors/Advisors
  • Smith, Megan, Principal Supervisor
  • Cox, Narelle, Co-Supervisor, External person
Place of PublicationAustralia
Publisher
Publication statusPublished - 2020

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