Within CHILD, we have tried to concentrate our international collaboration to certain universities with which we have long-term partnerships, as well as specific project areas.

Long-term research collaborations with universities

We have collaborated with researchers at CAAC (Center for Augmentative and Alternative Communication), University of Pretoria, for about 20 years. Researchers we currently work with include Professors Juan Bornman and Shakila Dada, as well as Associate Professor Alecia Samuels and their colleagues. Together, we have conducted several joint research projects that have produced scientific articles, course materials, and assessment tools. The collaboration has also led to joint summer courses, doctoral and researcher exchanges, and shared modules in advanced education. Common themes in the collaboration are the ICF framework, participation, and alternative communication/picture symbols. Ongoing research collaborations focus on participation, children’s rights, and the situation of children with disabilities in low- and middle-income countries. Many researchers from both universities are involved in the PMP project. The collaboration has been funded through grants from, among others, STINT/NRF and Forte.

The University of North Carolina has been a partner for CHILD researchers for more than 20 years. The collaboration has been particularly intensive with the School of Education/School Psychology (Professor Rune J. Simeonsson) and the School of Nursing (Associate Professor Eric Hodges, Associate Professor Sheila Santacroce, Professor Marcia van Riper). These collaborations have been developed through EU programs (Transatlantic Consortium and Erasmus) and have involved over 20 extended visits by doctoral students and researchers, as well as a large number of shorter exchanges. Additionally, joint summer courses have been conducted. The collaboration is now also funded through joint research projects. Common themes in the collaboration include the ICF framework, early intervention, participation, children with cancer, and children’s oral health. The partnership has led to researcher and student exchanges, joint research seminars, and co-authored publications.

The collaboration with the University of Porto has lasted for about 15 years. The focus has been on early intervention in preschools and participation for children with disabilities, as well as children with chronic illnesses. The researchers we have mainly collaborated with are Ana Pinto, Vera Coelho, Catarina Grande, and Joana Cadima. The partnership has resulted in researcher exchanges, the use of shared instruments, jointly organized conferences, and summer courses. There are connections to all of our preschool projects as well as PMP. The collaboration has produced several joint publications.

For about ten years, we have collaborated with researchers from Chang Gung University in Taiwan regarding children with disabilities and their daily functioning. The researchers we have worked with are Professor Ai-Wen Hwang and Associate Professor Lin-Ju Kang at the Graduate Institute of Early Intervention, College of Medicine, Chang Gung University, as well as Associate Professor Hua-Fang Liao, School of Physical Therapy, National Taiwan University, and their colleagues. Common themes in the collaboration have been the ICF/ICF-CY framework, participation in daily activities for children with disabilities, and families’ and children’s involvement in the intervention process—namely identifying functioning problems, addressing them, setting goals, designing and implementing methods, and evaluating interventions. The collaboration has included joint seminars, shared development and use of assessment instruments, and joint seminars for parents and staff. We also share supervision of doctoral students. The collaboration has been internally funded by the universities alongside larger grants from external foundations. The partnership has resulted in a significant number of joint publications related to ICF and/or participation.

International collaboration in project area

A central theme in CHILD’s research is participation, defined as involvement in a life situation. The definition is taken from the WHO’s health classification system ICF, which CHILD researchers have worked for several years to further develop. We argue that the concept of participation contains two dimensions: first, presence—physically or virtually. Presence is a necessary prerequisite for the second dimension, involvement, if one is present. Around this concept of participation, we have built collaborations both nationally and internationally, and it is also central to the studies we conduct ourselves.

In collaboration with researchers from Australia, Canada, the USA, and the Netherlands, we have developed a theoretical framework for participation research called the “Family of Participation Related Constructs” (fPRC), and have also initiated the Center for Developmental and Disability Research (CeDDR). CeDDR is administered by Melbourne University – Murdoch Research Institute on Developmental Disabilities. The collaboration around the fPRC has led to a number of publications where we discuss the concept (see publications after this presentation). CHILD researchers also participate in a large research program on participation, CP-ACHIEVE, in Australia, which is based on the fPRC framework. The framework serves as the theoretical foundation for many of our project areas.

We maintain that the two dimensions of participation can be applied in research concerning individuals, families, and how services are delivered. At all these levels and in all these environments, functioning can be described in terms of presence and involvement when present. Below, international collaboration in some of our major research areas related to participation and the fPRC is described.

Publications

  • Adair, B., Ullenhag, A., Keen, D., Granlund, M., & Imms, C. (2015). The effect of interventions aimed at improving participation outcomes for children with disabilities: A systematic review. Developmental Medicine and Child Neurology, 57(12), 1093-1104. https://doi.org/10.1111/dmcn.12809
  • Adair, B., Ullenhag, A., Rosenbaum, P., Granlund, M., Keen, D., & Imms, C. (2018). Measures used to quantify participation in childhood disability and their alignment with the family of Participation-Related Constructs: a systematic review. Developmental Medicine and Child Neurology, 60(11), 1101-1116. https://doi.org/10.1111/dmcn.13959
  • Granlund M. (2013). Participation-challenges in conceptualization, measurement and intervention. Child: care, health and development, 39(4), 470–473. https://doi.org/10.1111/cch.12080
  • Granlund, M. (2018). Is independence the same as participation for young people with disabilities? Developmental Medicine and Child Neurology. https://doi.org/10.1111/dmcn.14041
  • Imms,C., Adair,B., Keen,D., Ullenhag, A., Rosenbaum,P., & Granlund, M. (2016). ‘Participation’: A systematic review of language, definitions and constructs used in intervention research with children with disabilities. Developmental Medicine and Child Neurology. https://doi.org/10.1111/dmcn.12932
  • Imms,C., Granlund, M., Wilson, P., Steenbergen, B., Rosenbaum, P., & Gordon, A. (2017). Participation – both a means and an end. A conceptual analysis of processes and outcomes in childhood disability. Developmental Medicine and Child Neurology, 59(1), 16-25. https://doi.org/10.1111/dmcn.13237
  • Imms, C., & Granlund, M. (2014) Editorial: Participation: Are we there yet…Australian Occupational Therapy Journal, 61(5), 291-292. https://doi.org/10.1111/1440-1630.12166

Participation in everyday life is an indicator of well-being and learning. Involvement in a life situation, that is, engagement, is a dimension of participation. Preschool environments vary across cultures. For example, we know that children in Northern Europe spend proportionally more time in free play and less time in activities led by staff compared to preschools in many other countries. At CHILD, we have several projects that examine preschool environments and how the design of the environment and the composition of the group affect children’s engagement and learning. A special focus is on children in need of support. The projects involved are PEPI, TUTI, ethnicity and special support in preschool, as well as engagement in preschool and children’s achievements in grades 3 and 6 (see project information).

By combining knowledge, collected data, and researchers from all these projects, we have built a research network in collaboration with Vanderbilt University in the USA (Professor Dale Farran), University of Pretoria in South Africa (Professor Juan Bornman and Associate Professor Alecia Samuels), and University of Porto in Portugal (PhD Vera Coelho). Researchers from Chang Gung University in Taiwan also participate periodically. The collaboration is based on observing children in preschool using the same methods, holding joint seminars and trainings, and publishing joint articles. Doctoral students and postdoctoral researchers have also spent research months at the partner institutions.

PMP stands for Picture My Participation and involves developing an assessment tool where children with disabilities or chronic illnesses can self-rate their participation in everyday activities, which can then serve as a basis for interventions based on the child’s own ratings (see project information).

The collaboration around PMP has further deepened the CHILD group’s cooperation with researchers in South Africa, Australia, Portugal, Taiwan, and China, with whom we have long-standing contacts. The collaboration focuses on testing the feasibility of PMP under different circumstances, both culturally and economically. We hope this will lead to better knowledge of how environmental conditions affect participation. The collaboration also involves further developing PMP from being solely a general assessment tool to being usable in habilitation and school settings for children with disabilities or chronic illnesses. The goal is for PMP to facilitate children’s active involvement when setting goals for interventions.

An international collaboration has also developed around our research program on participation and mental health for children with disabilities.(see project information) We work with researchers in Australia, Canada, the United Kingdom, and Taiwan. The collaboration focuses on conceptually clarifying the difference between mental health and mental illness, as well as how mental health relates to participation. Several researchers also participate in our systematic literature reviews on the development of mental health over time in children with disabilities, as well as in a review on how children’s and parents’ participation in the intervention process can be improved. Both conceptual analyses and systematic literature reviews are well suited for international collaboration, as they require relatively few financial resources and allow for remote cooperation.

We also share data collection instruments with the CP-ACHIEVE research program in Australia. Additionally, within CHILD, we have a project on bullying and children with neuropsychiatric disorders led by Associate Professor Lilly Augustine (see project information). This project is partly based on collaboration with a large number of countries through the regularly recurring Health Behaviour in School-aged Children (HBSC) survey, which collects data from multiple countries on physical and mental health.

The two dimensions of the concept of participation—being present and being involved when present—can also be applied to children’s and caregivers’ encounters with healthcare. In these meetings, children and parents can be more or less present when decisions are made about goals for interventions and the design of those interventions. Children and caregivers can also be more or less involved in the various steps of the procedures carried out, such as preparation for surgery or planning of interventions. In several projects, we have international collaborations with researchers who are also interested in participation in healthcare. This concerns both participation in the care procedures performed and participation in planning support when returning to everyday life after medical treatment has ended.

Regarding how the care of children with autism is adapted in high-technology medical procedures, there is a collaboration with Dalhousie University in Canada. Professor Isabell Smith, who works there, has developed a training program for the care of children with autism within high-technology healthcare. In our project, we are working with an implementation intervention where the training program, as well as guidelines and checklists to prepare the care of the child and their family when they come to the hospital for various interventions, are being implemented (see project information).

In one project, we focus on whether nurses’ interactions with patients can be improved by having them take a course during their education that combines lectures and seminars on patient interaction with individual feedback. The goal is for patients to feel secure and in control of their care. This project is conducted in collaboration with Associate Professor Eric Hodges from the University of North Carolina (UNC) (see project information).

We also collaborate with the same university, UNC, in a project studying participation in dental care for children with Down syndrome. Participating international researchers include Professor Marcia van Riper from UNC and Luc Marks from Ghent University Hospital in Belgium. (see project information).

Regarding support when children with cancer return to everyday life at school, we have a project studying how the children’s problems are formulated in medical care, habilitation, and school. The aim is to facilitate the transition from hospital back to school for the children by clarifying how problems are defined in different settings. In this project, we collaborate with Associate Professor Sheila Santacroce, UNC (see project information).

2023: Meeting within the South Africa–Sweden University Forum (SASUF).