PicPecc – Pictorial support in person-centred care for children

Background

The right of the child to communicate forms the basis of this project, and its goal is to achieve symptom relief for the child with cancer, and to maintain —or indeed enhance— his/her well-being. The project is based on the principles of universal design, meaning that all content is explained and implemented with support functions such as text, images and sound. Both Sweden and South Africa have challenges with regard to language barriers impeding the communication of symptoms between children, legal guardians and healthcare professionals. Children with cancer have the right to actively take part in decisions regarding their health and, in order to achieve this, they need support to communicate their symptoms; for functioning in their everyday life, such communication support largely relies on information, communication and technology.

Objective

All together, this project aims to enhance the ability of children with cancer to communicate symptoms from their perspective in an attempt to facilitate person-centred care to promote coping, health and well-being in these children. An interdisciplinary team of researchers and multi-professional clinicians from Sweden and South Africa will generate new perspectives about the issue of symptom communication, management and relief. The digital tool will be tested in both Sweden and South Africa, and this application for funding relates to the studies in Sweden. Data analyses from both countries will be conducted with collaboration between the two countries.

Method

A complex intervention has been chosen to facilitate an alternative approach to symptom assessment and communication of children’s symptoms in paediatric oncology care — with this modified practice consisting of: a) a digital tool, which can be used by children, legal guardians and health care professionals alike, but is driven by the children themselves, b) workshops with paediatric oncology teams about enhanced symptom communication that is person- and child-centred, and c) one coach/research assistant at each of the clinical departments to support the implementation of the intervention. 

Within the project, a survey will also be translated to evaluate the effects of person-centred care, that is, Visual Care Measure.

Expected results

The development of a digital picture-based tool for communication support may enable children with cancer to effectively communicate their symptoms and improve their well-being. The goal is to increase the child's right to participate by using a person-centered approach.

PhD project: Person-centred measurement of symptoms in children with a universally designed e-health tool

CNS tumour treatment is intensive and often entails extensive side effects, both during and several years after the end of treatment. Therefore, it is important to identify and respond to all side effects, such as physical and emotional symptoms, early in a child’s cancer journey. For reliable information about symptoms, children’s self-reports should be the primary source, and children should be involved in their care. The e-health tool Pictorial support in person-centred care for children (PicPecc), which can support this care, has three main functions for children: I) assess and report self-ratings of symptoms via the Faces Thermometer Scale (FTS); II) provide access to support and assistance through professional caregivers or self-care; and III) show self-reported data for the child. The overall purpose of this project is twofold: I) to validate the psychometric properties of the FTS in the assessment of pain and II) to adapt PicPecc for the management of symptoms in children with CNS tumours who have undergone surgery. The research questions for this project are as follows: a) Can FTS support differentiation of expected pain? b) How do children use the FTS to grade expected pain? c) How can PicPecc be adapted to users to support children discharged from hospital after surgery for CNS tumours? d) What are the children’s, parents’ and healthcare professionals’ perceptions of using PicPecc when a child with a CNS tumour is discharged from hospital after surgery? Data collection methods will include self-assessments, interviews, workshops and surveys of children, parents and healthcare professionals. The data will be analysed using quantitative and qualitative methods for psychometrics, as well as the development and testing of complex interventions. The goal is to optimise children’s quality of life through increased participation and person-centred care. An intervention developed in close collaboration with children, parents and healthcare professionals increases the possibility of implementation in clinical practice.

Publications:

Castor C, Björk M, Bai J, Berlin H, Kristjansdottir O, Kristjansdottir G, Hansson H, Höök A, Stenström P, Nilsson S. Psychometric evaluation of the electronic faces thermometer scale for pain assessment in children 8–  17 years old: A study protocol. Paediatr Neonatal Pain. 2023;00:1-11. 

Esplana L, Olsson M, Nilsson S. 'Do you feel well or unwell?' A study on children's experience of estimating their nausea using the digital tool PicPecc. J Child Health Care. 2022 Apr 22;13674935221089746.  

Karlsson K, Johnson E, Nilsson S. The Children´s Action-Reaction Assessment Tool (CARAT) as an observational tool for assessing symptom management: An initial validation study with children aged 3-7 years undergoing needle procedures. J Spec Pediatr Nurs. 2021 Oct;26(4):e12334.  

Nilsson S, Wiljén A, Bergquist J, Chaplin J, Johnson E, Karlsson K, Lindroth T, Schwarz A, Stenmarker M, Thunberg G, Esplana L, Frid E, Haglind M, Höök A, Wille J, Öhlen J. Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study. BMJ open. 2021;May 4;11(5):e042726.   

Nogéus M, Nilsson S, Björk M. Pediatric Nurses' Person-Centered Approach to Nausea Management in Children With Cancer. J Pediatr Hematol Oncol Nurs. 2023 Mar-Apr;40(2):91-99.  

Thunberg G, Johnson E, Bornman J, Öhlén J, Nilsson S. Supporting person-centred communication in paediatric care using augmentative and alternative communication as universal design: A position paper. Nurs Inq. 2022 Apr;29(2):e12426. 

Wiljén A, Chaplin JE, Crine V, Jobe W, Johnson E, Karlsson K, Lindroth T, Schwarz A, Stenmarker M, Thunberg G, Öhlén J, Nilsson S. The development of an mHealth tool for children with long-term illness to enable person-centred communication: a user centred-design approach. JMIR Pediatr Parent. 2022 Mar 8;5(1):e30364.