Delemere, Emma (2023) The Role of Connected Health Technologies in Supporting the Psychosocial Wellbeing of Families Impacted by Paediatric Cancer. PhD thesis, National University of Ireland Maynooth.
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Abstract
Survival rates for paediatric cancers are increasing. With this comes a growing
need to investigate the factors which impact the wellbeing and quality of life (QOL) of
children and families affected. Across a series of eight interconnected studies, this
research examined the impact of paediatric cancer on the psychosocial wellbeing of
families, and the potential of Connected Health (CH) to mitigate burden and increase
wellbeing. CH is defined as any technology which gathers, analyses and interprets user
data in a manner intended to support health outcomes, and includes Electronic Health
Records (EHRs), Mobile Health (mHealth), and sensor technologies, amongst others.
Studies are presented across four sections, which outline a) the current evidence in
relation to CH; b) the unmet needs of families impacted by paediatric cancer; c) the
barriers and facilitators to CH use in paediatric cancer; and d) a pilot psychosocial CH
intervention for families of children with cancer.
The first two studies, presented in Section A, explored the current role of CH for
families impacted by paediatric cancer. As CH may derive from both empirical and
commercial sources, both forms were analysed to determine the current availability and
efficacy of such tools. Study 1 involved a systematic review of the literature regarding
CH use in supporting families with paediatric cancer, while Study 2 consisted of a
content analysis of commercially available CH mobile applications (apps). Positive
effects across both commercially available and empirically driven CH were found.
However, the limited number of CH interventions, alongside the high volume of
feasibility and acceptability analyses, suggests that further experimental analysis is
needed to determine the efficacy of CH.
Next, Section B explored the unmet needs of families living with paediatric
cancer in Ireland, through the lens of parents and healthcare providers (HCPs). Study 3
involved in-depth interviews with parents and supportive personnel (specifically HCPs
and hospital volunteers) to determine families’ unmet needs. The results of this
qualitative analysis highlighted the vast array of interconnected challenges encountered
by families, across both family and individual functioning. This in turn allowed
attention to be directed to several domains in which support may be meaningfully
targeted.
For CH to effectively address the needs of families, technologies must be
accessible to those for whom they are designed. To this end, the studies presented in
Section C examined the factors which facilitate or inhibit CH use by families. Using
secondary analysis of the Health Information National Trends dataset, Study 4
examined the impact of the digital divide on efficacy in health information seeking for
caregivers of children with illness, while Study 5 explored its impact on CH use. Next,
to determine the technological pre-requisite skills required to effectively use CH, Study
6, a survey of parents and HCPs, examined the role of eHealth literacy, technology use
and attitude on the ability to identify higher quality CH. Following this, Study 7
explored barriers and facilitators to CH use from the perspectives of parents and HCPs
in Ireland through in-depth interviews conducted in tandem with Study 3. While
positive perspectives on CH were found, the results obtained demonstrate the impact of
the digital divide and technological pre-requisite skills on CH access for parents.
Avenues through which CH may offer support included communication, care
individualisation and information sharing, though data security and pace of change
presented as hesitations to use.
Finally, drawing upon the results of Studies 1 to 7, and guided by public and
patient involvement (PPI), the efficacy of an online self-paced Acceptance and
Commitment Therapy (ACT) programme to support families living with paediatric
cancer is presented in Section D. In addition to exploring the feasibility and
acceptability of this CH mediated psychosocial programme, Study 8 sought to examine
the role of psychological flexibility on parental wellbeing through this online mediated
ACT programme. Specifically, a repeated measures design was used to explore the
impact of the CH mediated intervention on the psychological flexibility, burden and
wellbeing of parents of children with cancer. Results indicated acceptability of the
programme and positive effects on wellbeing, burden and psychological flexibility,
though challenges with post-intervention data collection was noted. Findings suggested
a key role of cognitive defusion on the psychological flexibility of parents, suggesting a
need for additional analysis in this area.
Taken as a whole, this research demonstrates the utility of CH to support
families impacted by paediatric cancer and identifies key factors which should be
considered to facilitate uptake in practice. Further, it presents a model through which
CH may be meaningfully applied to effectively address the needs of families impacted
by paediatric cancer
Item Type: | Thesis (PhD) |
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Keywords: | Role; Connected Health Technologies; Supporting; Psychosocial Wellbeing; Families Impact; Paediatric Cancer; |
Academic Unit: | Faculty of Science and Engineering > Psychology |
Item ID: | 17635 |
Depositing User: | IR eTheses |
Date Deposited: | 04 Oct 2023 08:37 |
URI: | https://mu.eprints-hosting.org/id/eprint/17635 |
Use Licence: | This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here |
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