A Critical Review of the Use of Technology to Provide Psychosocial Support for Children and Young People with Long-Term Conditions

Aldiss, Susie; Baggott, Christina; Gibson, Faith; Mobbs, Sarah; Taylor, Rachel

doi:10.1016/j.pedn.2014.09.014

Cited by 24 publications

(23 citation statements)

References 56 publications

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“…A recent review highlighted the importance of clinicians understanding CYP’s needs in relation to their use of health technologies and also to help CYP identify appropriate technology. 4 A study examining the concerns of CYP (without LTCs) also highlighted the concern, consistent across all age groups, of trust for health-related social media. 77 …”

Section: Discussionmentioning

confidence: 99%

“… 3 There is growing interest in the use of technologies to support children and young people (CYP) with LTCs. 4 …”

Section: Introductionmentioning

confidence: 99%

“… 1 To date, there is limited research into the challenges of using technology and concerns felt by end-users, particularly CYP. Recent systematic reviews highlight privacy and security issues associated with the use of mobile health applications (apps) for CYP 4–6 and CYP wanting access to safe, moderated forums to communicate with peers. 7 For example, the Brushing RemInder 4 Good Oral HealTh (BRIGHT) trial 8 used a short messaging service to encourage CYP to brush their teeth.…”

Section: Introductionmentioning

confidence: 99%

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Children and young people’s concerns and needs relating to their use of health technology to self-manage long-term conditions: a scoping review

et al. 2020

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BackgroundThe use of patient-facing health technologies to manage long-term conditions is increasing; however, children and young people may have particular concerns or needs before deciding to use different health technologies.AimsTo identify children and young people’s reported concerns or needs in relation to using health technologies to self-manage long-term conditions.MethodsA scoping review was conducted. We searched MEDLINE, PsycINFO and CINAHL in February 2019. Searches were limited to papers published between January 2008 and February 2019. We included any health technology used to manage long-term conditions. A thematic synthesis of the data from the included studies was undertaken. We engaged children with long-term conditions (and parents) to support review design, interpretation of findings and development of recommendations.ResultsThirty-eight journal articles were included, describing concerns or needs expressed by n=970 children and/or young people aged 5–18 years. Most included studies were undertaken in high-income countries with children aged 11 years and older. Studies examined concerns with mobile applications (n=14), internet (n=9), social media (n=3), interactive online treatment programmes (n=3), telehealth (n=1), devices (n=3) or a combination (n=5). Children and young people’s main concerns were labelling and identity; accessibility; privacy and reliability; and trustworthiness of information.DiscussionThis review highlights important concerns that children and young people may have before using technology to self-manage their long-term condition. In future, research should involve children and young people throughout the development of technology, from identifying their unmet needs through to design and evaluation of interventions.

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Section: Discussionmentioning

confidence: 99%

“… 3 There is growing interest in the use of technologies to support children and young people (CYP) with LTCs. 4 …”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Children and young people’s concerns and needs relating to their use of health technology to self-manage long-term conditions: a scoping review

et al. 2020

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“…Technology based programs have proven effective methods for educating young children and technology is being used as an educational resource in the healthcare field [66]. In fact, a 2012 report stated that, "half of smartphone owners use their devices to get health information and one-fifth of smartphone owners have health apps" [67].…”

Section: Media: Technology Based Delivery Methodsmentioning

confidence: 99%

Audience, Content, Media: A Literature Review about Factors to Consider When Designing Technology Based Asthma Education Programs for Children

Wyatt¹

2015

J Child Adolesc Behav

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Childhood asthma is a growing societal problem that causes suffering for children and families. Short of finding a cure, the best way to address this problem is to give children with asthma the resources they need to control their condition. Unfortunately, research and resources for young children with asthma are lacking. The authors hypothesize that an approach using technology based delivery methods to provide age-appropriate education, which promotes self-regulation and includes psychosocial elements, could help children with asthma decrease exacerbations in the short term and establish healthy habits in the long term. To lay the groundwork for the initial investigation of this hypothesis, the authors reviewed the literature for three elements: audience (children with asthma), content (self-regulation and psychosocial elements), and media (mobile technology applications and digital story). Literature was reviewed for children's beliefs about illness and medication, self-regulation versus selfmanagement, the psychosocial elements of parental support and peer influences, technology and education, clinical computer-based education, electronic educational games, and smartphone applications. The gaps in the literature found regarding these topics point to areas where future research would be instructive for designing effective, technology based applications for children with asthma. To produce the most effective asthma education materials for children, all three elements in this literature review-audience, content, and medium-should be investigated in future research studies.

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“…Still other parents may avoid the binder altogether and never open it. In contrast, technology has the potential to help families manage their informational needs and move towards normalization of their lives [8]. As the “5 Rights” framework, established for decision support, seeks to deliver the right information to the right person(s), using the right format, in the right channel, at the right point in the workflow [9], the same 5 rights can be applied in helping deliver the most relevant information to families of children with cancer at the proper time.…”

Section: Introductionmentioning

confidence: 99%

Reducing Parental Uncertainty Around Childhood Cancer: Implementation Decisions and Design Trade-Offs in Developing an Electronic Health Record-Linked Mobile App

Marsolo¹,

Shuman²,

Nix³

et al. 2017

JMIR Res Protoc

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BackgroundParents of children newly diagnosed with cancer are confronted with multiple stressors that place them at risk for significant psychological distress. One strategy that has been shown to help reduce uncertainty is the provision of basic information; however, families of newly diagnosed cancer patients are often bombarded with educational material. Technology has the potential to help families manage their informational needs and move towards normalization.ObjectiveThe aim of this study was to create a mobile app that pulls together data from both the electronic health record (EHR) and vetted external information resources to provide tailored information to parents of newly diagnosed children as one method to reduce the uncertainty around their child’s illness. This app was developed to be used by families in a National Institutes of Health (NIH)-funded randomized controlled trial (RCT) aimed at decreasing uncertainty and the subsequent psychological distress.MethodsA 2-phase qualitative study was conducted to elicit the features and content of the mobile app based on the needs and experience of parents of children newly diagnosed with cancer and their providers. Example functions include the ability to view laboratory results, look up appointments, and to access educational material. Educational material was obtained from databases maintained by the National Cancer Institute (NCI) as well as from groups like the Children’s Oncology Group (COG) and care teams within Cincinnati Children’s Hospital Medical Center (CCHMC). The use of EHR-based Web services was explored to allow data like laboratory results to be retrieved in real-time.ResultsThe ethnographic design process resulted in a framework that divided the content of the mobile app into the following 4 sections: (1) information about the patient’s current treatment and other data from the EHR; (2) educational background material; (3) a calendar to view upcoming appointments at their medical center; and (4) a section where participants in the RCT document the study data. Integration with the NCI databases was straightforward; however, accessing the EHR Web services posed a challenge, though the roadblocks were not technical in nature. The lack of a formal, end-to-end institutional process for requesting Web service access and a mechanism to shepherd the request through all stages of implementation proved to be the biggest barrier.ConclusionsWe successfully deployed a mobile app with a custom user interface that can integrate with the EHR to retrieve laboratory results and appointment information using vendor-provided Web services. Developers should expect to face hurdles when integrating with the EHR, but many of them can be addressed with frequent communication and thorough documentation. Executive sponsorship is also a key factor for success.Trial RegistrationClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT)

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A Critical Review of the Use of Technology to Provide Psychosocial Support for Children and Young People with Long-Term Conditions

Cited by 24 publications

References 56 publications

Children and young people’s concerns and needs relating to their use of health technology to self-manage long-term conditions: a scoping review

Children and young people’s concerns and needs relating to their use of health technology to self-manage long-term conditions: a scoping review

Audience, Content, Media: A Literature Review about Factors to Consider When Designing Technology Based Asthma Education Programs for Children

Reducing Parental Uncertainty Around Childhood Cancer: Implementation Decisions and Design Trade-Offs in Developing an Electronic Health Record-Linked Mobile App

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