- Title
- Optimising care for adolescents and young adults with cystic fibrosis in Australia
- Creator
- Holland, Lucy Ruth
- Relation
- University of Newcastle Research Higher Degree Thesis
- Resource Type
- thesis
- Date
- 2021
- Description
- Research Doctorate - Doctor of Philosophy (PhD)
- Description
- Cystic fibrosis (CF) is Australia’s most prevalent, chronic, life-limiting, genetic condition, predominantly characterised by impaired and declining lung function over time. The disease requires complex, multimodal, life-long treatment. Rapid improvement in prognosis has been seen in CF over recent decades, and the average life expectancy is now 38 years. The rapidity of this change has greatly altered the profile of needs among those with CF, as well as the nature of CF care. Adolescents and young adults (AYAs) experience significant biopsychosocial impacts across every realm of functioning and specific threats to the management of daily care. These impacts result from the interface between CF and development and have significant long-term consequences for survival and quality of life. Adolescent health is now a well-established subspeciality, with associated principles and practices of youth-friendly care. However, while recognition of the significant impacts faced by young people with CF is growing, to date there has been limited exploration of the experience of care for young people and professionals and how it can be optimised. This PhD research aimed to address this gap to determine how care can be optimised for AYAs living with CF in Australia. This was done across two mixed-methods studies, based on a constructionist epistemological framework, developmental theory and the Capability Approach. Study 1 examined how AYAs experience CF, with 21 AYAs aged 15–30 years recruited through one paediatric and one adult Australian CF centre. Distress (Distress Thermometer), quality of life (Cystic Fibrosis Questionnaire – Revised (CFQ-R)) and health literacy (Health Literacy Questionnaire (HLQ)) data were examined. Semi-structured interviews were undertaken and thematically analysed. A high proportion of participants reported clinically significant distress. Strengths and challenges in relation to quality of life and health literacy were identified. Distress was negatively correlated with many quality-of-life domains, and health literacy and quality of life demonstrated significant association across several domains, illustrating important avenues for clinical intervention. Qualitative themes included the broad-ranging impacts of CF for young people, the complexities of managing CF, care and life, and recommendations for care. Study 2 employed two phases of research to examine the knowledge and experience of health care professionals caring for AYAs living with CF in Australia and identify what is needed to optimise care. Phase 1 involved qualitative focus groups with three paediatric and three adult Australian CF services, comprising 28 professionals, which were thematically analysed. Themes included: AYAs as a unique patient cohort; the complexity of care; unique approaches to care; barriers and facilitators to quality care; and factors needed to optimise care. The factors were associated with the model of care, funding, staffing and resources, collaboration, education and research. Based on these results, phase 2 involved a national, mixed-methods online survey to evaluate the high-priority factors needed to optimise care with 107 health professionals working in CF services and community organisations. Factors related to the model of care were of greatest priority, with a specific focus on improving psychosocial care. In alignment, improving clinic processes, education for health professionals, collaboration and staffing were also priorities. These findings point to the importance of a consensus-based, developmentally appropriate, capability-based model of AYA CF care. Recommendations to optimise care within such a model are made, and the systemic response required to support this change is discussed. The strengths and limitations of this work are delineated throughout along with areas in need of future research. This work provides a path forward to begin to optimise care for young people with CF and ensure that health professionals are best supported in providing care and that young people with CF are offered the best opportunity to live their best lives and fulfil their human potential.
- Subject
- cystic fibrosis; adolescent health; youth health; health care; models of care; health services research; qualitative research
- Identifier
- http://hdl.handle.net/1959.13/1445670
- Identifier
- uon:42641
- Rights
- Copyright 2021 Lucy Ruth Holland
- Language
- eng
- Full Text
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| Thumbnail | File | Description | Size | Format | |||
|---|---|---|---|---|---|---|---|
| View Details Download | ATTACHMENT01 | Thesis | 4 MB | Adobe Acrobat PDF | View Details Download | ||
| View Details Download | ATTACHMENT02 | Abstract | 385 KB | Adobe Acrobat PDF | View Details Download |