Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study
Jonas Bergquist,
Stefan Nilsson,
Joakim Ohlen,
Angelica Wiljén,
John Chaplin,
Ensa Johnson,
Katarina Karlsson,
Tomas Lindroth,
Anneli Schwarz,
Margaretha Stenmarker,
Gunilla Thunberg,
Linda Esplana,
Eva Frid,
Malin Haglind,
Angelica Höök,
Joakim Wille
Affiliations
Jonas Bergquist
Department of Chemistry – Biomedical Centre, Analytical Chemistry and Neurochemistry, Uppsala University, Uppsala, Sweden
Stefan Nilsson
University of Gothenburg Centre for Person-Centred Care, and Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden
Joakim Ohlen
Institute of Health and Care Sciences, University of Gothenburg Sahlgrenska Academy, Gothenburg, Sweden
Angelica Wiljén
Department of Paediatrics, Södra Älvsborg Hospital, Region Västra Götaland, Borås, Sweden
John Chaplin
Department of Paediatrics, Institute for Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Ensa Johnson
Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria, South Africa
Katarina Karlsson
Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden
Tomas Lindroth
Division of Informatics, University of Gothenburg, Gothenburg, Sweden
Anneli Schwarz
Department of Paediatrics, Södra Älvsborg Hospital, Region Västra Götaland, Borås, Sweden
Margaretha Stenmarker
Department of Paediatrics, Institute for Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Gunilla Thunberg
DART centre for Augmentative and Alternative Communication and Assistive Technology, Sahlgrenska University Hospital, Region Västra Götaland, Gothenburg, Sweden
Linda Esplana
Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Region Västra Götaland, Gothenburg, Sweden
Eva Frid
Department of Paediatric Oncology and Haematology, Skåne University Hospital, Lund, Sweden
Malin Haglind
Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Region Västra Götaland, Gothenburg, Sweden
Angelica Höök
Department of Anaesthesia and Intensive Care, Linköping University Hospital, Linköping, Sweden
Joakim Wille
Department of Paediatric Oncology and Haematology, Skåne University Hospital, Lund, Sweden
Introduction This 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 analysis Both 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 dissemination Ethical 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 registration ClinicalTrials.gov; NCT04433650.
