A growing number of children are engaging in health risk behaviors or living with a health condition [1-6]. Children’s management of health conditions greatly influences their physical, emotional, and psychosocial growth; development; and well-being as well as their health into adulthood [1,3,7-9].

The family unit, namely children and their immediate family members (ie, caregivers and siblings), plays an important role in shaping children’s health-related behaviors [6-8,10,11]. Children also assume varied degrees of responsibility for their health with age and into adulthood [3,6]. Long-term multicomponent, multidisciplinary interventions incorporating behavioral change and self-management techniques (eg, disease education, goal setting, and self-monitoring) and involving the family unit are recommended for treating or managing childhood health conditions or encouraging health-promoting behaviors in children [3,12]. Such services are traditionally administered in person; offer limited enrollment with strict eligibility criteria; require extensive time from trained health care professionals (eg, physicians, allied health practitioners, and nurses); and have limited accessibility, particularly in areas of lower socioeconomic advantage or regional or remote areas [3,5,13].

Using digital technologies to adapt conventional services to a web-based setting—offering eHealth interventions—has the potential to overcome the limited accessibility and reach of traditional services for treating childhood health conditions or to influence health-supporting behaviors. Studies have suggested that the use of digital technologies (eg, mobile or video communication platforms or websites) allow the continuation of health care when conventional or specialized care, beyond primary care, is unavailable [5,14].

Existing literature has considered the breadth of eHealth interventions delivered through various eHealth modalities. A 2021 systematic review reported that in the last decade and up until the beginning of the COVID-19 pandemic, there has been a surge in eHealth interventions, largely developed to treat mental illnesses and noncommunicable diseases and delivered through telehealth platforms or mobile phones [15]. Another systematic review in 2021 [4] found that eHealth technologies were mostly used for monitoring, tracking, and reporting purposes. Existing research on eHealth interventions for treating or managing specific health conditions or encouraging health-promoting behaviors in children has focused on evaluating program effectiveness [3,9,12,16-18]. Studies have found that such interventions have improved condition-specific outcomes (eg, disease markers, symptom management, and adherence to disease management plans) and health behavior changes in children [3,12,17-20]. Web-based programs were proposed as a potentially favorable type of eHealth intervention for children and their caregivers [4,21].

With an increased number of families with children living with health conditions needing treatment, urgent action is needed to optimize the development and delivery of eHealth interventions for children and families. Although the evidence base on the effectiveness of such interventions is expanding, there is limited research exploring the experiences of eHealth interventions for children and their families. The needs, values, and perceptions of program end users (ie, children and their caregivers) are essential for program development; participants are key informants of their health, including engagement in health-supporting behaviors or medical treatment [22,23]. Understanding their experiences with eHealth interventions can provide valuable insight on the program’s potential to impact the participating child’s health, including on health outcomes overtime, sustainability of changes, design features to maximize program effectiveness, uptake and engagement, and mechanisms underlying children’s and their families’ health. There is a developing body of literature exploring participants’ lived experiences with family-focused eHealth interventions to prevent or treat health conditions in children.

This qualitative systematic review aims to synthesize the viewpoints of children and their families on their experiences with family-focused web-based programs for improving health. Findings from this review will inform the development of eHealth interventions and enhance our understanding of the ability of eHealth interventions to meet the health-related needs of children and their families.

Eligibility criteria were determined using the Population, Intervention, Comparator, Outcome and Study design framework.

Ovid MEDLINE, Ovid Embase, Cochrane Library, Scopus, and CINAHL were searched for articles that met the eligibility criteria in October 2022 and updated in October 2023. Search results were limited to human studies published in English and within the last decade to capture evidence on the most up-to-date eHealth developments and updated versions of web-based interventions.

The search used both keyword and subheading search terms related to families, web-based programs, experiences or perspectives, and qualitative research methods. The search strategy for each database is included in Multimedia Appendix 2.

To test the validity of the search strategy, 3 key articles that met the inclusion criteria were identified [26-28]. The search strategy was developed with senior researchers with experience in pediatric research or interventions and qualitative research and confirmed with a university librarian. The reference lists of included articles were hand searched for additional relevant articles.

Retrieved citations were exported into EndNote 20 software (Clarivate). Duplicates were removed and the remaining results were imported into and managed using Covidence (Veritas Health Innovation). Titles and abstracts were screened independently by at least 2 authors (DZ, SG, and ZED), after which full-text articles were screened independently against the eligibility criteria by 2 authors (DZ, SG, and ZED). Disagreements on the inclusion of articles were resolved by consensus.

Data were extracted using a bespoke data extraction template that was piloted by 2 authors (DZ and SG) before data extraction. Information extracted from articles included publication details (authors and year and country of publication); study aim; participant characteristics (participating children’s age health status and the participating caregivers); study design (qualitative methodology and sample size); intervention characteristics (purpose and key features of the intervention and level of guidance or support provided throughout the intervention); and outcomes (themes and representative quotes relating to participants’ experiences). Data were extracted independently by one author (DZ) and confirmed with a second author (SG); 3 papers were selected randomly where SG independently extracted data to compare and confirm the data extraction process.

Studies were appraised using the Critical Appraisal Skills Programme qualitative checklist [29]. Included studies were independently assessed by one author (DZ) and confirmed with a second author (SG). Three papers were selected at random and independently appraised by both authors, after which assessment results were discussed, discrepancies were addressed, and the first author appraised the remaining papers.

Thematic synthesis [30] was undertaken on the extracted data about participating children and caregivers’ experiences with the intervention using inductive line-by-line coding of the results and representative quotes extracted from the included studies. Four papers were selected at random and independently and manually coded by 2 authors (DZ and SG). Codes were discussed by both authors (DZ and SG) and refined, whereby the coding process was confirmed. The remaining papers were then coded by DZ, where new codes identified throughout the process were discussed and further verified by SG. One author (DZ) then independently developed descriptive categories from these codes that were discussed and critically reviewed regularly between 2 authors (DZ and SG) until a consensus was reached. These descriptive categories were then synthesized into overarching themes.

Individual and collaborative reflexivity were undertaken during the planning and implementation of the review methodology [31]. Authors were dietitians or nutritionists and researchers, with clinical or research experience in pediatric nutrition, weight management or lifestyle programs, or education. Most authors have been developing their knowledge of or capacity in qualitative methodology, and one author has extensive experience with qualitative research. All authors reflected on and acknowledged their personal and professional experiences by engaging in reflexive writing (eg, researcher notes and journaling) or team discussions throughout the review process. Authors collaborated as a team to resolve disagreements during the screening process and when analyzing and reporting the data. During team discussions, authors also communicated their expertise in the review methodology, assumptions made during decision-making, and expectations of results.

The search identified 5524 articles after the removal of duplicates, of which 28 articles were included in the qualitative synthesis (refer to Figure 1 for the PRISMA diagram). Two articles included in this review reported findings from the same study [32,33]. The studies included in this review examined 26 distinct interventions, where 1 study explored 3 versions of an intervention (ie, adapted to 3 cultures) [34], 1 study examined 2 versions of an intervention (ie, partly guided versus entirely self-guided versions) [35], 5 studies evaluated 2 separate interventions (ie, including the conductance of process evaluations on the web-based program) [26,27,36-38], and the remaining studies investigated one web-based program each [28,39-56].

The characteristics of the included articles are summarized in Table 1. Studies examined web-based programs delivered in the United States [39-46], Canada [28,47-49], United Kingdom [34,50,51], England [32,33], Sweden [35,52-54], Australia [37,38,55], New Zealand [34,56], Italy [34], and Spain [26,27,36]. Participants included children in their school-aged years (aged 5-18 years): primary school–aged children [26,27,32,33,36,42,50,56], secondary school–aged children [28,34,35,37-41,43-46,51,52,54], or both primary and secondary school–aged children [47-49,53,55]. Children in 24 studies were formally diagnosed or screened to be at higher than normal risk for a health-related condition or risk factor by a health care professional (eg, physicians, allied health practitioners, and nurses) [26-28,32-45,47-49,51-54,56]. One study included families with children who may have self-identified with having a health disorder [55]. Of the included studies, 15 reported the gender of the participating caregivers; mostly mothers participated in the intervention program [32,35,37,39-44,48,50,51,53-55]. A total of 8 studies included information on the parent or caregiver’s academic background, where all caregivers noted completing higher education [32,40,42-44,46,48,49]. Only 2 studies reported the socioeconomic statuses of the families [44,46], where families from both studies mostly reported having an average annual income.

Most of the web-based programs were developed for the management of a medical condition (24 distinct interventions for the treatment or management of 17 unique health-related conditions: autism [37,38], overweight or obesity [47,53], depression [35,51], tic disorder [32,33], sickle cell disease [39,41], obsessive compulsive disorder [52], anxiety [55,56], spinal fusion [40], functional abdominal pain [26,27,36], juvenile idiopathic arthritis [48], sleep disturbance related to having asthma [42], cancer [28], type 1 diabetes [43,49], celiac disease [49], traumatic brain injury [34,44], nonsuicidal self-injury [54], and posttraumatic stress disorder [45]). Two interventions were developed to influence health-related behaviors in school-aged children (unrestricted to a medical diagnosis or condition) [46,50]. All but 2 interventions were entirely technology based (no in-person elements) [37,53]. A total of 19 studies reported on the intervention program’s frequency [26,27,34,36,40,42,43,46,48,50,53,56] or length [32,33,35,37,39,40,43,46-48,50,51,53,54], where interventions mostly included weekly modules and lasted 4 to 12 weeks.

A total of 13 interventions were self-guided [26-28,35,36,39, 42,43,45,48-51,54,55], of which 7 interventions included other eHealth components [26,27,36,39,42,43,50,54,55]. The eHealth components had personalized functions in 3 programs (ie, pedometer [50] and a mobile app used for monitoring or tracking purposes [39,54]) and automated functions in 4 programs (ie, email reminders [26,27,36,42,43,55]). Studies also examined partly guided programs [32-35,37,40,41,44,46,47,52,53,56]. A total of 12 interventions included adjunctive support from professionals (eg, doctoral or postdoctoral research fellows, psychologists, and exercise specialists) who used eHealth technologies such as a videoconferencing platform [34,44], a phone [32,33,35,40,47,56], an email [47], and a built-in messaging platform [32,33,35,52,56]. Adjunct features of included programs are summarized in Table 2.

Qualitative data were mostly collected using semistructured interviews conducted at post program completion (3 months post program completion or shorter) [26-28,32,33,35-37,39-46, 48,50-55]. A total of 23 studies examined the experiences of the family unit [26-28,32-37,39-44,46-52,54-56], with only 1 study focusing solely on the point of views of the participating caregivers [53], and 1 study reporting on feedbacks of the participating children [45]. All except 1 study involved the delivery of the web-based program in its entirety to families; 1 study explored families’ experiences with the intervention following their completion of one representative program module [45].

The Critical Appraisal Skills Programme checklist [29] completed for each study is summarized in Table 3. All studies were clear about their research aims, included qualitative methodology appropriately, and discussed the value of the research. All except 1 study [34] clearly described the recruitment strategy or the collection of all data. Similarly, all except 2 studies [38,44] clearly described the research design. All studies considered ethical issues; however, 1 study was unclear whether ethics approval was obtained [45]. Most studies adequately described the analysis process [26,27,35-37, 40,42,45-48,51-55]. Most studies also provided a clear statement of findings [26-28,33,35-37,40-43,45,47-49,51-55]. It was unclear whether most studies adequately considered the relationship between researcher and participants; most studies lacked reports of authors’ reflexivity or information on whether the researcher critically examined their own role, potential bias and influence during study design, data collection, analysis, and presentation [26-28,32-34,36,38-51,53,54,56].

The key themes identified on families’ experiences with family-focused web-based health programs were (1) connecting with others, (2) agency of learning, (3) program reputability or credibility, (4) program flexibility, (5) meeting participants’ needs regarding program content or delivery, and (6) impact on lifestyle. Themes reported by authors of included studies are summarized in Multimedia Appendix 3 [26-28,32-56].

This review identified 28 articles on 26 studies, resulting in 6 themes describing children or caregivers’ perception of family- and web-based eHealth interventions. Descriptions of each theme encompassed families’ reflections on program features regarded as valuable to them and that influenced their uptake of or engagement with the intervention.

On the basis of the studies included in this review, families mostly had positive experiences using web-based programs supporting health. This review found that families positively perceived elements of the web-based program that imitated features of their conventional counterparts delivered in person. Existing literature on eHealth interventions for children and their families suggests that as with essential features of conventional interventions, eHealth interventions should incorporate behavioral or self-management principles involving the family unit, such as symptom management, lifestyle behaviors, relationship management, and psychosocial management [3,12]. Similarly, this review found that families favored self-guided features aligned with behavioral and self-management principles of the web-based programs, including goal setting; self-monitoring and self-reflection tasks; having interactive, tangible, relatable, and credible content; and personable activities that are easily adaptable to daily living (ie, themes: agency of learning, program reputability or credibility, program flexibility, and meeting participants’ needs regarding program content or delivery). The web-based nature of web-based eHealth programs further empowers families during treatment by enabling flexibility to access resources when needed and unconstrained by locality and in whether or how resources (eg, information) are used [57]. Families also shared that such features enabling this flexibility encouraged their engagement with the intervention or health-supporting behaviors.

The included studies highlighted the importance of quality relationships to bolster the health and well-being of children and their families. Evidence suggests that children with chronic health conditions feel lonelier compared to children lacking health conditions [58]. Loneliness detrimentally impacts health, including the trajectory of health conditions, and hinders children from seeking help or communicating with others [58]. The proliferated use of technology affects social interactions, and passive use (ie, using technology in a way that decreases opportunities for social connectedness) also risks exacerbated feelings of loneliness [59]. This review found that web-based eHealth interventions can promote connections for families—including families with children with health conditions—within and outside the family unit (ie, theme: connecting with others). As suggested by other literature examining children’s perspectives of digital technologies, opportunities to engage with web-based communications preserved or enhanced children’s relationships with others (eg, family members and friends) [57]. Findings from this review suggest that web-based eHealth programs can cultivate quality connections with others, regardless of the absence of in-person interactions, and may therefore influence health-related outcomes in children. Our findings extend existing evidence on the health-supporting effects of social connections by providing insight into the benefits of designing web-based programs involving the family unit (ie, subtheme: connecting with own family members). A web-based program that involves children and their families, or at least a caregiver, can satisfy the sense of relatedness required for children to engage in the desired health-promoting activities or behaviors. Existing literature recognizes the importance of the social environment and personable support to facilitate learning and influence children’s self-management of or responsibility for their health [3,60-62]. Web-based program features that enable social interactions encourage active learning; individuals are more likely to apply learned behaviors when informational and emotional support are received from others [60-62]. Children, in particular, learn through modeling or observing others [61,62]. School-aged children, particularly primary school–aged children (ie, children <12 years of age), significantly depend on their caregivers to manage their health; caregiver involvement is commonly characteristic of conventional behavioral interventions for children [8]. Depending on the level of guidance provided by the web-based program, direct digital translations of conventional health care services may lack humanized elements, including psychosocial support or human connections, which may deter achieving intended health outcomes [63]. We also found that families valued human connections and were more likely to engage with the intervention when the program supported or enhanced their relationships with others, including children with their caregivers and vice versa, families with other families with children undergoing similar health conditions or situations, and health care professionals (ie, theme: connecting with others).

Novel insights were gained on families’ relationships with health care professionals or the role of health care professionals in family-focused web-based programs (ie, subtheme: connecting with experts, health care professionals, or responsive AI). It was found that families improved their communication with a health care professional throughout the web-based program. Participating children may have found comfort with the web-based nature of the intervention—related to them being able to participate in the intervention at a physical environment of their choice—which supported them to feel safe and actively communicate or build a rapport with others [57,61]. Web-based programs can cultivate collaborative relationships or social engagements between participating families and involved health care professionals, supported by features including web-based discussion forums, inbuilt messaging platforms, and phone or videoconferencing platforms. This collaborative relationship further increases the likelihood that children engage with the intervention (ie, the learning process) and assume increased responsibility for their health [60,61].

This review found that families may prefer support received from human-to-human over human-to-AI interactions throughout the intervention (ie, subtheme: connecting with experts, health care professionals, or responsive AI). This is consistent with previous literature on the limitations of AI in eHealth interventions to support the specialized or therapeutic needs of patients [63,64]. However, this review also noted families’ appreciation for responsive AI when included in web-based programs due to its rapid responses and accessibility. Generative and responsive AI is rapidly developing, with increased efforts to humanize AI features and evidence that AI technology has the potential to provide compassionate health care [65,66]. It is important to note that the limitations of AI found in this review may not be applicable in the future [65]. Involving families in the development of AI features in eHealth interventions is essential for ensuring acceptable family-centered education [67].

This review also identified unmet needs experienced by families with the web-based program (ie, theme: meeting participants’ needs regarding program content or delivery). Families noted unsatisfied informational needs, where the content was described as being too simple or irrelevant to them, given their age, education background, or experience with the pediatric health condition. Children have individual and dynamic needs with age and stage or degree of health conditions [8,60,64]. This finding suggests that web-based programs may satisfy the foundational needs of children and their families when managing health conditions. However, more complex and specialized needs, including diminishing motivation or troubleshooting decreased self-confidence or self-management experienced during eHealth interventions, may require support from a health care professional or more sophisticated integration of contemporary AI [12,64]. On the other hand, this finding may also suggest that web-based eHealth interventions can create opportunities for families to realize their unmet health-related needs or intentions to seek further support from health care professionals [57].

This is the first qualitative systematic review, to the researchers’ knowledge, that synthesizes research reported in the last decade on the experiences of both the participating children and caregivers with family-focused web-based intervention programs. Whereas this review applied a search strategy that involved Boolean searching versus, for example, subject searching and was translated across databases to identify articles that met the eligibility criteria, the evidence base on family-focused web-based programs to improve children’s health is still developing. The search method of this review was therefore chosen to maximize flexibility. The search strategy was also confirmed with a university librarian to ensure focus. A limitation of the identified studies is the lack of clarity on whether researchers engaged in reflexivity, which is a core component to ensure transparency of the research process and quality of qualitative research. Limitations of this review also include that findings are representative of research from economically advanced countries, where resources, including access to the internet, may be more available. It is unclear whether this review equitably captures the perspectives of families from diverse populations, as not all studies have reported on characteristics that were found to influence participants’ experiences with eHealth interventions, including caregivers’ education background or socioeconomic information [64,65]. Similarly, families in the identified studies may have also disproportionally conveyed positive feedback with the web-based programs. This review also explored the experiences of the family unit. Most studies in this review reported on the combined perspectives of participating children and their caregivers. Children, caregivers, and other family members may have different understandings of or priorities and motivators with children’s health that may influence their experiences with treatment or health management, including eHealth interventions. More research is needed to distinguish these perspectives of children, caregivers, caregiver-child dyads, and other family members on family-focused eHealth interventions and across disease trajectories and children’s developmental stages. This review focused on web-based programs directed at the family unit, which may exclude families’ experiences with other types of family-focused eHealth interventions such as smartphone app–based programs. This review also presents a snapshot of findings on families’ experiences with web-based eHealth programs in the last decade. With progressive advancements in digital technologies and AI and families’ adaptations to the digital culture, continued exploration of this phenomenon is needed to inform the development of family-focused eHealth interventions.

On the basis of the findings of this review, key considerations when developing eHealth interventions for improving children’s health and incorporating eHealth in health care systems include those outlined in Textbox 1.

This review synthesized the evidence on families’ experiences with family-focused eHealth (ie, web-based) interventions. Insights were gained on the potential of eHealth interventions to satisfy health-related needs of children and their families. Key considerations presented in this review highlight the need for program developers and health care systems to adapt the elements of eHealth interventions to child developmental stages and the complex dynamism of childhood health conditions. In doing so, the benefits of eHealth interventions may be maximized to meet the growing number of families needing treatment for childhood health conditions. More research is needed to equitably tailor family-focused eHealth (ie, web-based) interventions to diverse populations and explore this phenomenon in the context of novel advancements in digital technologies and AI. Future research could also distinguish the perspectives of children, their caregivers, and other family members on eHealth interventions. These considerations can be used to enhance the design of family-focused eHealth interventions and better inform their inclusion in treatment plans to improve children’s health.