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The development of a mHealth tool for children with long-term illness to enable person-centred communication: a co-design approach
Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg (SWE); University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg (SWE); Department of Paediatrics, Region Västra Götaland, Södra Älvsborg Hospital, Borås (SWE).
Department of Paediatrics, Institute for Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg (SWE).
University of Gothenburg Centre for Person-Centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg (SWE).
University West, School of Business, Economics and IT, Divison of Informatics. (LINA)ORCID iD: 0000-0002-2378-5432
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2021 (English)In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 30, no SUPPL 1, 1, SIArticle in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
SPRINGER , 2021. Vol. 30, no SUPPL 1, 1, SI
Keywords [en]
children, communication, long-term illness, mHealth, pediatric care, person-centered care, symptom assessment, universal design
National Category
Nursing Pediatrics Other Medical Engineering
Identifiers
URN: urn:nbn:se:hv:diva-18264DOI: 10.2196/30364ISI: 000712224700375PubMedID: 35258466Scopus ID: 2-s2.0-85126482642OAI: oai:DiVA.org:hv-18264DiVA, id: diva2:1651097
Funder
Swedish Childhood Cancer Foundation, TJ2017-0028, KP2018-0023, MTI2019-0011Vinnova, MTI2019-0011Forte, Swedish Research Council for Health, Working Life and Welfare, SA2018-7681
Note

This study was funded by Barncancerfonden (grants TJ2017-0028, KP2018-0023, and MTI2019-0011); Vinnova (grant MTI2019-0011); the Swedish Foundation for International Cooperation in Research and Higher Education (STINT), Vetenskapsrådet, Forte (grant SA2018-7681); STNT180705349550; South Africa–Sweden University Forum; the University of Gothenburg Centre for Person-centered Care, which is funded by the Swedish Government’s grant for Strategic Research Areas (Care Sciences) and the University of Gothenburg; Region Västra Götaland, Södra Älvsborg Hospital, and Department of Research Education and Innovation, Borås; the Borås Research and Development Fund against Cancer; and Alice Swenzon’s foundation

Available from: 2022-04-11 Created: 2022-04-11 Last updated: 2022-04-11

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