PicPecc – Pictorial support in person-centred care for children

Background

Everyone’s right to communicate forms the basis of this project, and its goal is to achieve symptom relief, 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. Sweden, Denmark, Iceland, Norway and South Africa have challenges with regard to language barriers impeding the communication of symptoms between patients, parents or guardians, and healthcare professionals. Everyone has the right to actively participate in decisions about their health. To exercise this right, they need support to communicate their symptoms. In everyday life, such communication support relies heavily on information and communication technologies.

An interdisciplinary team of researchers will generate new perspectives on symptom communication, symptom management and symptom relief.

Objective

Altogether, this project aims to enhance the ability of patients to communicate symptoms from their perspective in an attempt to facilitate person-centred care to promote coping, health and well-being. An interdisciplinary team of researchers and multi-professional clinicians will generate new perspectives about the issue of symptom communication, management and relief. The intention is to facilitate person-centred care in order to support symptom management, health and well-being.

Method

A complex intervention has been selected to facilitate changes in practice relating to symptom assessment and communication about emotions, symptoms and treatment in both healthcare and dental care.

As part of the project, a questionnaire for evaluating the effects of person-centred care, the Visual CARE Measure, has also been translated.

Expected outcomes

The development of a digital picture-based tool for communication support may enable all patients to effectively communicate their symptoms and improve their well-being. The goal is to increase everyone’s right to participate by using a person-centred approach.

Publications:

Höök A, Forsgren E, Björk M, Castor C, Nordh E, Nilsson S. Access to an mHealth Tool for Symptom Management in Pediatric Oncology Care: Triangulation Study. JMIR Form Res. 2026 Jul 2;10:e93934.

Westin E, Wiljén A, Hagman J, Nilsson S. Swedish Nurses Pain Assessment Documentation of Children in the Perioperative Period. Paediatr Neonatal Pain. 2026 Jul 7;8(3):e70041.

Höök A, Hylén M, Nilsson S, Castor C. Reply: The Electronic Faces Thermometer Scale (eFTS)—Construct Validity for Pain Assessment in Pediatric Postoperative Care in Sweden. Paediatr Anaesth. 2026 Jun;36(6):722-723.

Höök A, Hylén M, Björk M, Nilsson S, Bai J, Berlin H, Hansson H, Kristjánsdóttir G, Roxner R, Stenström P, Castor C. The Electronic Faces Thermometer Scale (eFTS)-Construct Validity for Pain Assessment in Pediatric Postoperative Care in Sweden. Paediatr Anaesth. 2025 Dec;35(12):1029-1036.

Kuyler A, Höök A, Forsgren E, Nilsson S, Clasquin-Johnson MG, Johnson E. Using a co- design approach to adapt a paediatric person-centred care training programme: Perspectives of paediatric healthcare practitioners. J Pediatr Nurs. 2025 Jul 24;85:112-120.

Nilsson S, Hansson H, Moons P, Onerup A, Saarijärvi M, Sabel M, Bratt EL. Is this the road to health? - the person in precision health. Eur J Cardiovasc Nurs. 2025 Sep 5;24(6):988-995.

Wiljén A, Chaplin J, Nilsson S, Karlsson K, Öhlén J, Schwarz A. Validity and reliability of the Swedish version of the Visual CARE Measure for assessing children’s perceptions of nurses’ empathy. Eur J Pediatr. 2025;184(2):145.

Höök A, Castor C, Björk M, Forsgren E, Muszta A, Nilsson S. Content validity of the electronic faces thermometer scale for pain in children: Is a picture worth more than a thousand words? Front. Pain Res. 2024:5, 1372167.

Johnson E, Masuku K, Nilsson S, Bornman J, Kuyler A. The feasibility of the PicPecc application as an mHealth tool: Reflections from South African children. Rehabilitation and Developing Health Systems 1(1); 2024.

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.