A systematic review and qualitative synthesis of the experiences of parents of individuals living with Duchenne Muscular Dystrophy (DMD) and an investigation of the wellbeing of young people in Ireland during the first wave of the pandemic

  • Clare Donnelly

Student thesis: Doctoral ThesisDoctorate in Clinical Psychology

Abstract

The first part of this thesis is a qualitative synthesis that aimed to understand the lived experiences of parents of individuals with DMD. A systematic review protocol was developed, inclusive of review inclusion and exclusion criteria. Four databases were searched and results screened against the criteria. Study quality was assessed and findings were analysed by thematic synthesis. From twenty-two studies, seven descriptive themes emerged and four analytical themes were derived. These themes led to the conclusion that the experience of parenting a child with DMD is characterised by an ongoing cycle of grief that begins at diagnosis, with simultaneous development of expertise in caregiving, within this parents continually adjust to the uncertainty implicit in their child’s life course and lifespan.

The second part of this thesis investigated whether the wellbeing of young people during the pandemic was related to containment behaviours - handwashing and physical distancing. A cross-sectional telephone survey was administered, using a random digit dialling strategy, to obtain a sample representative of the island of Ireland. Survey data included age, gender, location, and responses regarding containment measure adherence and the wellbeing variables of depression, anxiety, loneliness, and COVID-19 fear. 333 of the 3011 participants were aged 18-24 years. The 18-24-year-olds had greater depression but not anxiety than the older groups, greater loneliness than the 45-54-year-olds, greater COVID-19 fear than the 25-34-year-olds but lower COVID-19 fear than the 65-74-year-olds. Handwashing adherence was positively correlated with anxiety and COVID-19 fear in young people, but not depression or loneliness; physical distancing adherence did not correlate with any of the dependent variables. Gender predicted anxiety, loneliness, and COVID-19 fear in young people. Geographical location predicted depression and COVID-19 fear. The findings suggest that young people experienced modest impacts on wellbeing during the pandemic, which were not fully explained by containment measure adherence.
Date of AwardDec 2021
Original languageEnglish
Awarding Institution
  • Queen's University Belfast
SupervisorChristopher Graham (Supervisor)

Keywords

  • Duchenne Muscular Dystrophy
  • parent experiences
  • caregiver role
  • disease progression
  • qualitative evidence synthesis
  • systematic review
  • containment measures
  • young people
  • depression
  • anxiety
  • loneliness
  • COVID-19 fear

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