Children (0‐17 years of age) have the right to express their opinions in matters affecting them, including decisions about their health care [1]. To realize this, they need to be provided with opportunities to be heard and to communicate their experiences, preferences, and needs [2].

Person-centered care, according to the model developed by the Gothenburg Centre for Person-Centered Care, involves shared decision-making between 2 experts. The child, together with their parents, is an expert on their lifestyle, preferences, beliefs, values, and health issues, whereas the health care professionals are experts on the management of the disease [3]. Such shared decision-making requires that the child is listened to and supported in communicating their own perspectives. Within pediatric oncology, a person-centered approach to care requires attention to both the physiological side effects of treatment and the subjective experience of symptoms. Assessment strategies should prioritize self-reports whenever possible, considering children’s developmental stage and individual preferences for expressing their symptom experiences [4]. According to Withycombe et al [5], the core symptoms during childhood cancer therapy are anxiety, fatigue, nausea and vomiting, pain, sadness/depression, and sleep disturbances. These symptoms, apart from vomiting, are subjective, and self-reporting is recommended [5].

Digital technology is already a significant part of children’s daily lives, as they regularly use mobile devices. Providing children with validated tools for symptom self-assessment may enhance their ability to communicate how symptoms affect them. Children may also prefer digital tools for nonverbal communication regarding symptoms [6].

The use of digital health technologies can also extend symptom assessments beyond hospital settings, enabling children to independently access symptom assessments as a complement to standard care [7]. Early integration of strategies for symptom management may minimize physical and psychosocial distress and reinforce the expectation that symptoms can be managed. Health care professionals may support children and their families in developing and applying symptom self-management strategies to use at home [4].

A mobile app, PicPecc (Pictorial Support in Person-Centered Care for Children), was developed within children’s health care to facilitate remote symptom assessment [8]. In PicPecc (Figure 1), children can create an avatar by selecting skin color, hair color, hairstyle, and facial expression. A gaming function encourages children to assess symptoms by rewarding them with virtual pets for completed assessments. Ratings for symptoms are given by choosing the symptom to be assessed and rating its severity on the electronic Faces Thermometer Scale (eFTS). Users can write personal notes, indicate the location of a symptom on a body map, and use images to describe the nature of a symptom. After rating symptoms, a link is available that directs users to YouTube, where videos on symptom management can be accessed. Users can view their previous symptom ratings in a graph, and the app features a chat function for asynchronous communication with health care professionals (Figure 1).

In remote health care, access is crucial and is proposed as the “fit” between the provider and the client [9]. Access should be viewed as an overarching concept describing how the needs of patients align with the capabilities of health care. Five dimensions of access are proposed: availability, accessibility, accommodation, affordability, and acceptability [10]. These dimensions have been further developed by Sieck et al [9], who state that the technology functions as a mediator between the patient and health care, to which both need access. To utilize the benefits of digital health technology for symptom assessment and management, access to the technology needs to be tested.

The aim was to test a digital intervention with PicPecc in pediatric oncology care through the lens of access to technology.

The research questions are as follows:

This study employed a triangulation approach based on qualitative interviews, a quantitative instrument, and consumption data to determine access to digital technology through an intervention, PicPecc outside hospital.

Participants were recruited from 2 pediatric oncology centers in Sweden where children aged 0 to 17 years are treated for various forms of childhood cancer. The most common inpatient oncology treatments (apart from the treatment of side effects) are chemotherapy and surgery. After discharge from inpatient care, follow-up care varies depending on the treatment and diagnosis. Children who have received chemotherapy are often monitored with blood tests, either at a primary care center, a local hospital, or by home-based health care. If the child or the parents have questions, they are encouraged to contact the pediatric oncology center or the local hospital by phone. Postoperative follow-up also varies, depending on the diagnosis and type of surgery. Children with a diagnosis that requires additional treatment will return to the hospital as soon as they are ready to receive this treatment. For children undergoing surgery as the sole treatment, without additional chemotherapy or radiation, the child and the family return to the hospital for follow-up approximately 2 to 6 weeks after discharge.

The intervention (PicPecc outside hospital) consists of 3 steps (Figure 2).

Data were collected from participating children, parents, and nurses between September 2024 and June 2025.

The 5 dimensions of access defined by Sieck et al [9] were adapted into a framework for data analysis through 4 phases inspired by the action research spiral [14]. The authors represent different professional backgrounds with extensive experience in pediatric health care and have previously worked with the concept of access.

In the initial phase, 2 of the authors (AH and EF) translated the dimensions and established a preliminary framework. The second phase included 5 of the 6 authors (AH, EF, MB, CC, and SN) to explore the framework through collective discussions. The third phase involved understanding and interpreting how these dimensions could be used during the analysis. During the final phase, there was a collaborative refinement and clarification of the dimensions and the different components (interview, instrument, and consumption), which resulted in the final framework, presented as Table 2.

The dimension availability, focusing on participants’ needs and abilities, was reflected in the SUS-C item addressing confidence (item 9), as well as in the use of the chat function. Accessibility, which relates to digital skills, was reflected in SUS-C items concerning the need for technical assistance and the need for digital competence. Accommodation was reflected in SUS-C items regarding how the system, as well as its individual components, functioned together and how these components were used. Affordability was reflected in SUS-C items addressing the perceived complexity of the system, as well as in the extent to which different symptoms were assessed. PicPecc, as an application, was free to download and use. Finally, the dimension acceptability was reflected in the frequency of use in both SUS-C and consumption.

Interview duration ranged from 7 to 27 minutes (median 16.44, IQR 11.92-22.16 minutes). Data were analyzed by the first and second authors (AH and EF) in NVivo 15 (Lumivero) using the template analysis [15]. AH is a pediatric nurse and a PhD student, and EF is a speech and language therapist with a PhD degree. Coding was primarily deductive, guided by a priori themes: availability, accessibility, accommodation, affordability, and acceptability. The initial template was based on these 5 themes. During the coding process, AH and EF independently identified codes and assigned them to the a priori themes. The coding was then compared and discussed, and any discrepancies were resolved through discussion until consensus was reached between AH and EF. In the following step, subthemes were developed by grouping codes related to the same dimension, and this was also conducted independently by AH and EF. Differences in interpretation were addressed through discussions (also involving SN, CC, and MB) until agreement was reached. The final template is structured hierarchically, with the a priori themes as main themes and subthemes identified in the transcribed interviews [15]. A table summarizing the themes and subthemes is provided in Multimedia Appendix 4, and subthemes are exemplified by citations from participants.

This study was approved by the regional ethical review board (Dnr 2024-02450-01). Informed written consent was obtained from the accompanying parent of the children aged 6 to 14 years and directly from participating children aged 15 to 17 years. Assents were obtained from children aged 6 to 14 years. The children were informed that both parental and child assents were required. Assent forms for children were designed for different age groups and included an assent form based on pictures.

Results from the SUS-C indicated that most (n=18) participants perceived PicPecc outside hospital as easy to learn (item 10), easy to use and manage (item 7), and did not need any support when using it (item 4) (Table 3, Multimedia Appendix 6).

A summary of identified facilitators and barriers to a remote symptom assessment is shown in Figure 3.

The triangulation of data obtained from interviews, the instrument, and consumption data confirmed and diverged in findings across the different dimensions of access. Interviews indicated that participants generally appreciated “PicPecc outside hospital,” although the level of consumption varied. Scores from the instrument supported usability.

The sum of median scores for the instrument was high (Table 5), which may indicate that participants found PicPecc outside hospital to have good usability [16]. Scores for each item corresponding to children, parents, and nurses, respectively, are shown in Multimedia Appendix 6.

The aim was to test a digital intervention with PicPecc (PicPecc outside hospital) in pediatric oncology care through the lens of access to technology. The research questions were related to the dimensions of access [9] and explored PicPecc outside hospital to get an understanding of how mobile health (mHealth) can support children with an oncology diagnosis and their parents when they are at home. The use of triangulation, comparing qualitative and quantitative data, made it possible to explore the perceived and actual use of PicPecc, thereby providing a broader understanding of access. This triangulation identified both convergence and divergence between the collected data.

The overall findings indicated that PicPecc outside hospital was perceived as usable and meaningful and may enable communication regarding symptoms. In combination, the interviews, instruments, and consumption of PicPecc showed that PicPecc outside hospital may facilitate symptom assessments and symptom management and that participants perceived they could access PicPecc outside hospital for symptom assessments and management.

However, the needs and motivational factors among older children, along with challenges related to nurses managing assessments within the health care system, need to be considered. These findings align with the scoping review by Simon et al [17], which found that children were likely to accept new technology and that barriers were mostly related to organizational factors.

Children commented positively on the ability to express their symptoms without face-to-face communication. This, along with the chat conversations, aligns with partnership and shared decision-making in person-centered care and provides children with an opportunity to express how different symptoms affect their daily lives. The chat function was appreciated although not used by everyone. Nevertheless, previous studies have shown that real-time communication functions may facilitate an improved quality of life among adult patients [17]. Some of the children in our study thought that chat conversations were an easy way to get in touch with health care and that they could start a conversation themselves, without involving their parents. Symptom assessment and management are not sufficiently addressed in clinical practice, and providing an opportunity for a real-time conversation is an important part of an mHealth tool [18].

Self-reporting is the gold standard for subjective symptom assessments, and proxy reports do not always align with the experience of the child. Tomlinson et al [19] have shown a significant difference between self-report and proxy report regarding some symptoms. These discrepancies may reflect differences in how children and parents perceive, experience, and interpret symptoms [19]. Using PicPecc together may enhance communication and facilitate the sharing of understandings and needs [7].

PicPecc was described as easy to download, learn, and use. Initially, challenges with the login procedure posed a barrier. This barrier decreased over time and was managed with support from parents or nurses, highlighting the necessity of available assistance. Having your own device may be a prerequisite for using PicPecc. During the data collection, a tablet was made available for children to borrow. However, they all used their own device or their parents’ device. The use of PicPecc may offer new ways of communicating within the family, as well as with health care professionals, and plays an important role in managing symptoms [20,21].

The pictorial support in PicPecc facilitated the understanding of assessments. However, participants reported inconsistencies in how to interpret eFTS across the different categories, as well as difficulties in accessing an overview. Participating nurses also experienced the administrative interface as less intuitive. Previous publications regarding the eFTS used in PicPecc have shown content and construct validity for pain assessments [13,22]. This study revealed no difficulties in using eFTS when 10 represented a negative feeling, but when 10 represented a positive feeling, one child found it confusing. This highlights the need for a supportive function, as well as an introduction to using the different parts of the digital tool.

Apart from pain, the category feelings was assessed on the greatest number of days and on the largest number of occasions, aligning with findings by Christianson et al [23] who addressed a gap in emotional needs during conversations regarding prognostic discussions within pediatric oncology. PicPecc may act as a tool for discussions regarding emotional needs.

The relationship between the users’ resources in terms of time, money, and energy and the requirements of PicPecc outside hospital identified facilitators and barriers. Financial resources were not seen as a barrier. However, children’s energy levels and symptom burden influenced their motivation to use PicPecc. On the other hand, when symptoms started to diminish, engagement started to fluctuate. The relevance of PicPecc was closely tied to symptom experiences.

In this study, contextual factors were one of the identified barriers, indicating that someone at the hospital needs to be responsible for responding to the chat conversations and monitoring completed assessments. This barrier has also been identified by Simon et al [17], along with financial resources and time as the most common barriers. Symptom management depends on effective communication regarding the participants’ experiences [24,25].

In this study, the younger children (6‐12 years of age) were highly engaged and appreciated the option of customizing an avatar, along with the gaming function of collecting virtual pets. In contrast, the older children (13‐17 years of age) thought that the design was too childish, which made them less willing to participate. The review published by Cheng et al [21] showed that younger children were more involved, and developmental stages were factors that interfered with the interventions. This highlights the necessity of different versions of the tool for different ages or developmental stages, which was also suggested by our participants.

According to the definition of person-centered care, as described by the Gothenburg Centre for Person-Centred Care, a partnership includes shared decision-making. Attitudes toward children’s participation in shared decision-making are gradually changing [3,26]. Using a digital tool where access is secured may facilitate this partnership [27]. This also aligns with the definition of child and family-centered care, in which children are acknowledged to have rights, preferences, and perspectives, and an individualized partnership is achieved through a collaboration between children, parents, and health care professionals [28]. As an mHealth tool equipped with a validated self-assessment scale (eFTS), PicPecc may support children in expressing their views and in becoming partners in their care, aligning with the Convention on the Rights of the Child [1,8].

The credibility and trustworthiness of the qualitative findings were strengthened using a triangulation approach that combined data from interviews, instruments, and consumption. The analysis was performed with a template that included predefined themes based on a framework for access. During the analysis, several subthemes emerged according to participants’ experiences. Two authors with different professional backgrounds were involved in this process, reducing the risk of bias.

There are some limitations to this study. First, the interpretation of the 5 dimensions of access was made by the authors, and consequently, aspects of these dimensions may be missing or overlapping. However, the triangulation described access from different perspectives via interviews, ratings using the instrument, and by exploring factual consumption, which could spotlight aspects that one measure alone could have missed. That said, SUS-C has not yet been validated for use in children. In different contexts, adaptations of SUS for use in children have proven that the adapted instrument was feasible and showed good reliability [29,30]. In this study, SUS-C is used as a measure within the triangulation design, and the results from the instrument should be understood as supportive rather than definitive.

The qualitative analysis used a template analysis approach, whereby the 5 dimensions of access acted as a priori themes. On the one hand, this made the analysis more structured, but on the other hand, it may constrain the emergence of unanticipated themes, which could have led to overlooking participants’ experiences. However, this was managed during the analysis using subthemes that emerged from participants’ experiences. The use of a priori themes may have influenced how data were interpreted and categorized, and regular discussions between the authors were used to ensure that findings were grounded in the data. One of the authors (EF) involved in the analysis had no previous experience in pediatric oncology, which contributed to reducing the influence of context-specific preunderstandings and supported reflexivity.

The study has a rather small sample size, which limits the transferability of the findings. However, the participating children represented a wide range of ages and the most common diagnoses within pediatric oncology.

Participants used PicPecc outside hospital for 1 to 27 days, but for a more thorough experience, they may have to use it for a longer duration. However, children’s engagement with the intervention was influenced by symptom burden and energy levels, which varied during this period. Such variation makes it difficult to determine which barriers are related to the tool itself versus treatment-related factors.

During the study period, there were technical problems that affected the ability to respond to assessments and chat conversations. This issue, along with nurses’ experiences with the administrative interface, highlights the importance of the system’s reliability when further tested.

Finally, some of the participants used their own digital devices for downloading the app, whereas others used their parents’ devices, and this might influence the user experience. Each child having their own device might be necessary to ensure consistent usage among all children at all times of the day.

Triangulation of qualitative interviews, a quantitative instrument, and consumption through the lens of access showed that PicPecc outside hospital is promising and may benefit children in pediatric oncology care. Our findings indicate that PicPecc may support access to remote symptom management after discharge, particularly for younger children up to 12 years of age. However, access was influenced by several factors; for example, symptom burden and energy levels affected motivation and engagement. Differences in age and development were another factor; children above 13 years of age perceived the design as less relevant. Finally, organizational factors such as responsibility for monitoring assessments and chat conversations, as well as integration into existing health care systems, need to be addressed.