University of Gothenburg
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Group portrait of the project group
From top left: Ensa Johnson (P.I.), Anneli Schwarz, William Jobe, Juan Bornman, Tomas Lindroth, Katarina Karlsson, Portia Bimray, Stefan Nilsson (P.I.), Gunilla Thunberg, Khetsiwe Dlamini-Masuku, Angelica Wiljén, Jonas Bergquist.
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GPCC-collaboration with South Africa

Researchers from GPCC are collaborating with researchers in South Africa in a project that will help children communicate symptoms from their own perspective. The purpose is to facilitate person-centred care.

The history of this collaboration

South Africa – Sweden University Forum (SASUF) started in 2018 as a strategic internationalisation project with the overall aim of strengthening the ties between Sweden and South Africa in research, education and innovation.

Stefan Nilsson, researcher at the Institute of Health and Care Sciences and GPCC, attended their network meeting in the spring of 2018 in Pretoria. On this occasion the research group was formed which then applied for additional research funding from the Swedish Foundation for International Co-operation in Research and Higher Education (STINT) for the project PicPecc – Pictorial support in person-centred care for children.

Since 2019, therefore, this research has received financial support from both STINT and SASUF. In the spring of 2019, the research group was at another meeting with STINT and SASUF in Stellenbosch in South Africa. Due to Covid-19, the current project in SASUF has been extended to 2022. However, SASUF has received additional funding in the SASUF 2030 project, and this project has received funding for 2022–2024. The project therefore wants to continue to be part of SASUF.

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The research Group gathered during the workshop.

Workshop in Lund 2022

On 20-22 June 2022, the PicPecc researchers met to present their results and to plan for the future. They had three rewarding days where interesting qualitative results from South Africa were mixed with procedural estimates in dentistry in Malmö. The common goal was to facilitate children's and young people's communication through person-centred care and universal design.

Pictured are: Katarina Karlsson, Stefan Nilsson, Karen van Zilj, Ariné Kuyler, Ensa Johnson, Anneli Schwarz, Henrik Berlin, Rikard Roxner, Alta Terblanche, John Chaplin, Guðrún Kristjánsdóttir, Mia Hylén, Masuku Khetsiwe Phumelele, Jinbing Bai, Maria Björk , Gunilla Thunberg, Ólöf Kristjánsdóttir and Charlotte Castor.

Joint theoretical publication and digital tool

A joint theoretical publication has been written. It addresses the theoretical frame of reference, person-centering and universal design. A digital tool has been developed jointly. It is called PicPecc, and it contains seven South African languages amongst other things. PicPecc is currently being tested in both Sweden and South Africa, but due to Covid-19, this has taken a little longer than expected.

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Researchers working around a table.
Alta Terblanche, John Chaplin and Angelica Wiljén are seen in the image. Photo by Karen van Zilj
Photo: Karen van Zilj

Work in Pretoria 2022

In September 2022, the PicPecc group was at a new meeting in Pretoria where the Swedish and South African researchers worked further with the app and person-centered care. The picture above shows a work meeting and the picture below shows a visit to the Zuid Afrikaans Hospital in Pretoria.

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Research group posing in a stairwell.
In the picture: Anneli Schwarz, Angelica Höök, Stefan Nilsson, Tomas Lindroth, Johanna Hagman, Ensa Johnson, John Chaplin, Jonas Bergquist, Angelica Wiljén, Arine Kuyler, Alta Terblanche, Karen van Zilj, Helena de Waal och Mary Clasquin-Johnson.

New study in Pretoria 2023

Researchers at a conference and poster exhibition.
From left: Seanokeng Kgapola, Ensa Johnson, Jonas Bergquist, Angelica Höök, Angelica Wiljén, Stefan Nilsson, Kebalebile Motsepe, Angelica Höök och Angelica Wiljén.
Photo: Juan Bornman

27–31 March 2023, Swedish researchers were in Pretoria and started a new study at the Zuid-Afrikaans Hospital (ZAH), in which nursing staff working in the pediatric unit are participating. They will receive training in person-centred care based on the Mutual Meetings concept. Guardians and their children (from 5 to 18 years) who come to ZAH will also be included in the study. These children and guardians will have access to the Pictorial Support in Person-centred Care for Children (PicPecc) app to report their symptoms such as pain, nausea, anxiety, fear, appetite and emotions. In the pediatric department, there will be visual support, in the form of symbols, showing various examinations and treatments. The study is evaluated with questionnaires, blood samples and qualitative interviews. In connection with the start of the study, the project was also presented at SASUF Research and Innovation Week 2023.

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Researchers posing in group picture.
Angelica Höök, Mary Clasquin-Johnson, Juan Bornman, Karen van Zilj, Arine Kuyler, Tamlyn Naude, Prisilla Botha, Robert Jordan, Prisilla Botha, Alta Terblanche, Jonas Bergquist, Stefan Nilsson, Ensa Johnson och Angelica Wiljén.
Photo: Natasha Bezuidenhout

The pictures show a group picture from the presentation at the University of South Africa (UNISA), the poster presentation at SASUF and a group picture from the hospital.

Project web page: PicPecc – Pictorial support in person-centred care for children.

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

South Africa – Sweden University Forum (SASUF)

the Swedish Foundation for International Co-operation in Research and Higher Education (STINT)

Other joint publications:

The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach https://pediatrics.jmir.org/2022/1/e30364

Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study https://bmjopen.bmj.com/content/11/5/e042726.long

The Children's Action-Reaction Assessment Tool (CARAT) as an observational technique for assessing symptom management: An initial validation study with children aged 3-7 years undergoing needle procedures https://onlinelibrary.wiley.com/doi/10.1111/jspn.12334

A Systematic Review of Self-Report Instruments for the Measurement of Anxiety in Hospitalized Children with Cancer https://www.mdpi.com/1660-4601/18/4/1911 

More details about those in the picture above, from top left: Ensa Johnson (P.I.), PhD, University of Pretoria, Anneli Schwarz, Phil. Dr, Södra Älvsborgs Sjukhus, William Jobe, Phil. Dr, University West, Juan Bornman, Prof., University of Pretoria, Tomas Lindroth, Phil. Dr, University West / University of Gothenburg, Katarina Karlsson, Ph.D. Dr, University of Borås, Portia Bimray, PhD, University of the Western Cape, Stefan Nilsson (PI), Associate Professor, University of Gothenburg, Gunilla Thunberg, Associate Professor, University of Gothenburg, Khetsiwe Dlamini-Masuku, PhD student, University of Pretoria, Angelica Wiljén, doctoral student, Södra Älvsborgs Sjukhus, Jonas Bergquist, Prof., Uppsala University.