The Role of Connected Health Technologies in Supporting the Psychosocial Wellbeing of Families Impacted by Paediatric Cancer

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 cance

The Role of Connected Health Technologies in Supporting the Psychosocial Wellbeing of Families Impacted by Paediatric Cancer

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 cance

The Role of Connected Health Technologies in Supporting the Psychosocial Wellbeing of Families Impacted by Paediatric Cancer

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 cance

The role of Connected Health technologies in supporting families affected by paediatric cancer: A systematic review

Objectives: Families impacted by paediatric cancer are met with logistical, financial and psychological impacts, with severe acute respiratory syndrome coronavirus two creating additional barriers and stressors for these families. Connected Health (CH) may facilitate cancer care. The objective of the present study was to systematically review CH for families/informal caregivers affected by paediatric cancer. Methods: Using search terms relating to: (1) paediatric cancer, (2) family/caregivers and (3) CH, the databases of PsycINFO, Pubmed, EMBASE and Web of Science were searched. Inclusion criteria included an evaluation of CH technologies for supportive care for families/caregivers affected by paediatric cancer at any stage of treatment or survivorship. Results: Sixteen studies met inclusion criteria. CH was primarily web‐based (n ¼ 6), however smartphone applications (n ¼ 5), telehealth (n ¼ 2) and online groups (n ¼ 3) were utilised. Intervention areas included psycho‐social (n ¼ 6), health and information provision (n ¼ 8) and palliative care (n ¼ 2). Conclusions: While limited studies have evaluated the impact of CH on families living with paediatric cancer, emerging evidence suggests potential benefits. More evidenced‐based interventions are required

Technology usage, eHealth literacy and attitude towards connected health in caregivers of paediatric cancer

While Connected Health (CH) presents an attractive solution to supporting those with paediatric cancer within a burdened healthcare system, uptake has been limited in practice. This study explored the extent to which attitudes towards CH and the ability to identify evidence-based CH interventions could be predicted by technology usage and eHealth literacy for parents of children with cancer and their Health Care Providers (HCPs). A survey of 85 parents and HCPs was conducted consisting of measures of eHealth literacy, attitude towards online sources, electronic device/internet usage and evaluations of existing CH technologies. While respondents frequently interacted with online supports, CH use was limited (30.8%). Multiple regression and t-test analyses were conducted to determine the relationship between technology usage and eHealth literacy on CH use, attitude and perceived quality. Positive attitudes towards CH and strong eHealth literacy skills were found, however, those who had not used CH had significantly lower eHealth literacy than those who had (t(74)=2.08, p=.04 (two-tailed). Further, eHealth Literacy and device use significantly impacted attitude (F(3,75)=12.01,