Study selection

Electronic searches identified 22 063 unique records. Many excluded papers did not include preferences, did not separate CYP participant responses from those of adults or reported technology outside the review’s scope. 161 papers were included (figure 1) representing 159 studies. Details of the 161 papers are provided (online supplemental file 2).

Figure 1

PRISMA flow chart. CYP, children and young people; LTCs, long-term conditions; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analysis.

Characteristics of included studies

Studies were published between 2015 and 2021 (figure 2), undertaken in the USA (n=62), the UK (n=23), Canada (n=18), Australia (n=14), the Netherlands (n=7), Brazil (n=6), New Zealand (n=4), China (n=3), Denmark (n=3), Spain (n=3), Sweden (n=3), Finland (n=2) and Norway (n=2), and one study each in Korea, Estonia, France, Ireland, Japan, Korea, Nigeria, Greece and Turkey.

Figure 2

Included studies by publication date and country.

Studies included CYP with the following LTCs (online supplemental table 1): type 1 diabetes mellitus (n=22); mental health conditions including depression, anxiety, post-traumatic stress disorder, early-onset psychosis and unspecified mental health conditions requiring access to mental health services (n=26); cancer (n=20); asthma (n=17); obesity (n=7); juvenile idiopathic arthritis (n=6); attention deficit hyperactivity disorder (n=4); autism spectrum disorder/conditions (n=4); spina bifida (n=3); cerebral palsy (n=3); cystic fibrosis (n=3) and various other LTCs (n=44). Most studies focused on one LTC without reporting any comorbidities. One study included CYP with concurrent coeliac disease and type 1 diabetes,11 another included CYP with mental health conditions and comorbid symptoms of insomnia and anxiety disorder,12 and one study included CYP with autism spectrum disorder and depression13 Studies included CYP aged 2–18 years; 62 studies included participants under 11 years.11 14–74 Seven studies included children under 5 years, with parents, caregivers and specialists supporting their preferences.23 30 33 34 75–77 99 studies (58%) did not report ethnicity of CYP participants (figure 3A), and of the 133 studies that recorded sex, 65% recorded ≥50% female participants (figure 3B). Two studies included trans and gender-diverse CYP.78 79

Figure 3

Ethnicities and distribution of gender identity reported in included studies.

Many studies were qualitative (n=74) or mixed methods (n=25). Study designs also included user testing (n=11), pilot/feasibility studies (n=28), co-design (n=9), surveys/questionnaires (n=7), randomised trials (n=2), and one each of participatory action research, single-site cohort and community-based participatory design. Technologies were categorised using a typology80: internet (eg, websites, forums) (n=10); social media (eg, Facebook, Instagram) (n=10); mobile health (mHealth, for example, mobile phone apps, text messaging, tablets) (n=72); telehealth (eg, video-conferencing, interactive online treatment programmes) (n=18); devices (eg, wearables) (n=5). An additional category was developed to capture immersive/machine-led technologies comprising gaming, AI and VR (n=18). 26 studies17 22 43 48 50 52 62–64 81–97 involved a combination of technologies.

Preferences and needs expressed by CYP

Defining preferences was challenging; we excluded studies that only reported satisfaction or level of acceptability, to ensure an in-depth approach to understanding preferences. CYP provided detailed accounts of technology features they liked or preferred. Many preferences were similar across studies (online supplemental table 2). There were four overarching themes, summarised with quotations (online supplemental table 3). Many studies did not report the age and/or sex of the participant who reported the preference.

Design and functionality

CYP reported specific preferences about technology design and functionality. They preferred clearly laid out mobile apps and internet sources, divided into subsections, and well labelled.20 22–24 37 61 98–104 Ease of use and convenience were important; preferring technology that was ready to use and CYP not needing to search for information.20 22–24 52 59 77 89 95 99 101–103 105–109 Bright colours were appealing, making them ‘feel good’ when interacting with the technology.64 100 110

CYP expressed interest in using technologies that were present in their daily lives, for example, digital games accessed through smartphones, tablets and computers. Additionally, they valued apps that were accessible across different platforms/operating systems.27 61 102 Some CYP found it easier to record information using technology.52 They preferred a balance between technology simplicity and receiving appropriate information enabling them to engage with the technology.61 102 111 CYP appreciated technology with clear and uncomplicated language, without ‘doctory’ words or jargon, but not ‘too dumbed down’.70 82 95 100 104 112 They also had preferences about images and multimedia, and for programmes and apps with age-appropriate and developmentally appropriate content incorporating images and media that were relatable.30 66 69 95 100 Younger children’s preferences included background music, visual graphics and manga (Japanese comic) animations.30 34

Privacy and sharing

CYP need to balance privacy and sharing when using technology. Most CYP preferred to use technology to interact with, and share, information.19 20 25 39 52 78 94 99 101 111 113–118 They valued connecting with others with similar conditions or experiences, reducing loneliness and isolation.19 21 59 62 63 66 72 79 81 82 85 88 89 93–95 97 104 113 117–125 CYP with cystic fibrosis and type 1 diabetes benefited from chat rooms, breaking their isolation and helping them feel less alone.63 99 104 Immediacy of communication with healthcare professionals and assessment via messaging or video was positive for CYP with asthma, facilitating timely and targeted intervention.39 Some CYP preferred using technology to communicate, avoiding embarrassment and maintaining independence.12 79 111 113 118 126 127 They expected security functions in healthcare technologies.14 66 94 111 124 125 128 129 CYP appreciated technology enabling them autonomy and control over their information.20 78 90 102 113 130

Customisation and personalisation

The functionality to customise and personalise technologies was viewed as positive and important.20 21 49 55 66 78 101 102 105 117 131 132 This included personalising frequency (eg, reminders, text messages), content (eg, asthma triggers relevant for the individual), when and how they used the technology, and tracking their conditions and symptoms.49 72 77 78 87 88 91 98 105 116 133–140 Being able to set personal goals within the technologies was motivational, providing visual representation of their progress and incentive to achieve.37 89 113 114 121 133 135 The preference to personalise the technology was reported by CYP with spina bifida, asthma, cancer, type 1 diabetes, depression, sickle cell anaemia and haemophilia.20 49 78 102 105 117 Younger children’s views were well represented; CYP aged 6–17 years appreciated creating their own personalised character.20 68 87 141 CYP with LTCs with particularly complex medicine regimens, for example, asthma and cystic fibrosis, considered apps with medication reminder functions to be important.96 98 99 101 142 143

Interaction

Interaction preferences covered a range of features including gamification within the technology, for example, referring to the ‘magical’ experience of shooting balloons,42 noting games within the technology ‘provides a distraction and it calms me down’.78 CYP of different ages valued games, such as goals to incentivise improving their health, providing motivation.14 62 78 89 114 132 CYP valued incentives and rewards, including financial incentives.14 54 60 Interestingly, while CYP valued the opportunity to interact with peers with the same condition or with healthcare professionals online, some valued interactive technologies which removed the need for them to speak, viewing communication online as ‘less intimidating’.12 19 20 117 One study reported the positive of visualising personal experiences using avatars lessened the need to talk.131

CYP described how interacting with games and customising avatars helped them demonstrate their emotions and express their feelings.26 87 131 For example, CYP liked the option to add inner voices and emotions to avatars to express their feelings and interpret situations.131 Some CYP expressed how interaction with technology gave them greater confidence and better understanding about self-management, enabling independence.21 43 130 131 Immersive technologies were described by some as a distraction from what was happening around them,64 78 144 with VR games an ‘exciting distraction’ from negative aspects of rehabilitation such as boredom and pain.42

Stakeholder consultation

PPI members believed that it was critical to value CYP’s unique and expert opinions, separate from those of their parents, caregivers and healthcare professionals. This approach differs from studies excluded from this review that consider adults as proxies for CYP. PPI members contributed to the interpretation of findings, exploring early themes with quotations from CYP. They agreed with the initial findings presented, adding further depth to discussions of privacy, customisation and health technologies’ potential impact(s) on the relationship between CYP and their parent/caregiver. The PPI members led the development of the recommendations based on their review of the data and findings. The recommendations were refined over several months between PPI members and the wider team, delivering the final set of recommendations (Box 1).

Box 1 Recommendations

The following recommendations were derived from our findings and co-developed with CYP stakeholders (recommendations that CYP identified as most important are denoted with an asterisk).

The following recommendations were congruent with the recommendations made in our previous scoping review1:

Recognise the importance of CYP having their own, unique, expert opinion that is distinct from those of their parents/caregivers and healthcare professionals.*

Ensure any technology for use by CYP is age-appropriate and developmentally-appropriate (in terms of language and style).*

When designing and developing technology for CYP to manage LTCs, consider the value CYP place on customising/personalising aspects such as characters, reminders and when they choose to use the technology.*

The following recommendations are new and based on this review’s findings:

When developing and testing technology for CYP, include research that captures in-depth, detailed understanding of what CYP think about the technology (rather than satisfaction or simple acceptability scales).*

When undertaking research about CYP’s use of technology, consider whether your study participants represent the target end-users of the technology (for example, consider ethnic background, age and other characteristics of CYP participants). Report the characteristics clearly but do not use them to generalise results to specific populations unless appropriate.

Carefully consider the appearance of the technology as CYP have particular preferences including it being aesthetically pleasing and user-friendly.*

Consider that CYP need a balance between sharing information with peers, but not wanting to share with others (eg, their parents or other CYP). The option of sharing ultimately needs to rest with the individual and the option of anonymity may be preferred by some. Consider that some CYP may prefer the opportunity to interact through technology rather than verbally (eg, in appointments with clinicians).

Consider the positive value that CYP place on gamification aspects and incentives when using technology and include this as an option to encourage them to use the technology.

CYP, children and young people; LTCs, long-term conditions.