Background Children with long-term illnesses frequently experience symptoms that could negatively affect their daily lives. These symptoms are often underreported in health care. Despite a large number of mobile health (mHealth) tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product can promote accessibility and facilitate person-centered communication. Objective The aim of this study is to identify the symptom-reporting needs of children with cancer and congenital heart defects that could be satisfied by using a mobile app. Another aim is to evaluate how the child might interact with the app by considering universal design principles and to identify parents’ views and health care professionals’ expectations and requirements for an mHealth tool. Methods User-centered design is an iterative process that focuses on an understanding of the users. The adapted user-centered design process includes 2 phases with 4 stages. Phase 1 involved interviews with 7 children with long-term illnesses, 8 parents, and 19 health care professionals to determine their needs and wishes for support; a workshop with 19 researchers to deepen our understanding of the needs; and a workshop with developers to establish a preliminary tool to further investigate needs and behaviors. Phase 2 involved interviews with 10 children with long-term illnesses, 9 parents, and 21 health care professionals to evaluate the mock-up (prototype) of the mHealth tool. Data were synthesized using the interpretive description technique. Results A total of 4 aspects of needs emerged from the synthesis of the data, as follows: different perspectives on provided and perceived support; the need for an easy-to-use, non–clinic-based tool to self-report symptoms and to facilitate communication; the need for safety by being in control and reaching the child’s voice; and a way of mapping the illness journey to facilitate recall and improve diagnostics. The children with long-term illnesses expressed a need to not only communicate about pain but also communicate about anxiety, fatigue, fear, and nausea. Conclusions The findings of this study indicated that the PicPecc (Pictorial Support in Person-Centered Care for Children) app is a potential solution for providing communicative support to children with long-term illnesses dealing with multiple symptoms and conditions. The interview data also highlighted symptoms that are at risk of being overlooked if they are not included in the mobile app. Further studies are needed to include usability testing and evaluation in hospitals and home care settings.

IntroductionThis study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5–17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison.Methods and analysisBoth effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child’s perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology.Ethics and disseminationEthical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council’s guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals.Trial registrationClinicalTrials.gov; NCT04433650.

BACKGROUND Children with long-term illness frequently experience symptoms that affect their daily life, and this is underreported in healthcare. Despite the large number of mHealth tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product ensures that all may benefit from the design and that person-centred communication is facilitated. OBJECTIVE Our study aimed to develop a person-centred communication support mHealth tool (i.e. Pictorial support in person-centred care for children: PicPecc) based on universal design principles for children with long-term illness to communicate their symptoms, using the co-design process by involving various stakeholder groups (children with long-term illness, parents, healthcare professionals, developers). METHODS The co-design development process included four phases: (i) interviews with seven children, 8 parents and 19 healthcare professionals to determine needs and wishes for support, (ii) workshop with 19 researchers, (iii) workshop with developers and (iv) interviews with 10 children, 9 parents and 21 healthcare professionals to evaluate the mock-up (prototype) of the developed mHealth tool. Data were synthesised using interpretive description. RESULTS There is a need for children with long-term illness to address symptoms such as fear, fatigue, nausea, pain, and anxiety. Fatigue and anxiety may be overlooked by healthcare professionals and therefore an easy-to-use tool to facilitate communication with the children is needed. Three common aspects were constructed: different perspectives on provided and perceived support, need for an easy tool to assess symptoms and to facilitate communication, as well as mapping the journey to facilitate recall. Parent and children stakeholders expressed a need for support when dealing with psychosocial issues, while parents were simultaneously concerned that children may regard the word anxiety as too alarming. However, the children themselves did not react to the word. Researchers repeated the importance of employing easy-to-use mHealth tools for children to communicate symptoms going beyond pain, e.g. anxiety and fatigue. The developers highlighted the practical and logistical implications of suggestions offered by other stakeholders and proposed best options for the development of the tool. CONCLUSIONS The co-designed developed PicPecc tool demonstrated the capacity to provide support when dealing with multiple symptoms and conditions. PicPecc opens a dialogue between the child and the healthcare professionals, and it addresses symptoms that may otherwise be overlooked. Future research includes usability testing and evaluation in hospitals, as well as in a home care setting. CLINICALTRIAL -