Due to the COVID-19 outbreak, data collection for the CPPain survey was paused in March. We have now initiated a new round of invitations to participate in Norway. The other countries will start their data collection over the next 4-6 months.Latest News from the Program
The CPPain Program
Our vision is that all children and adolescents living with CP should be able to enjoy life without pain-related suffering or limitations imposed by unrelieved pain.
In March 2020 we started data collection for the CPPain survey in Norway but had to pause it due to the ongoing COVID-19 pandemic. We restarted the data collection in September. If you have accepted our invitation to participate, you can click on the link below to answer the survey.
The idea for the CPPain-program came from the staff at a special needs school in Skien, Norway. They had observed severe and unrelieved pain among children and adolescents with severe disabilities. They also observed how this pain negatively interfered with quality of life and function. The municipality asked the hospital to collaborate with them to improve clinical practice and the situation for these vulnerable children.
Children with CP and their parents have the best knowledge of the child’s pain burden
The main idea behind the CPPain-program is that children and adolescents with CP and their parents together have the best knowledge of the child or adolescent’s pain burden and need to be an integrated part of describing the problem, devising and implementing solutions, and evaluate their effect in close collaboration with researchers, health care personnel and professional caretakers.
The CPPain-program is an international research collaboration between Norway, Sweden, Finland, USA and Canada. The program is headed from Telemark Hospital Trust and Vestfold Hospital Trust in Norway. The CP-association in Telemark is represented in the program organization with a user representative. The program organization also includes two advisory panels, one user panel and one clinician panel.
The program was launched in January 2019 and will run for 6 years. We start with a mapping of today’s situation, which includes a survey (The CPPain-survey) and interviews with children, adolescents, parents and health care personnel. From what we learn, we will then develop, implement and evaluate an improvement project in close collaboration with children and adolescents with CP and their parents.
The CPPain Survey
We launch the CPPain-survey in the praticipating countries during 2020/2021. First in Norway, followed by Minnesota, USA, Sweden, Finland, and Canada. We invite children and adolescents with CP to respond themselves whenever possible. We also want to have all parents and siblings between 12 and 18 years old respond to the survey. Parents and children/adolescents with CP answers questions about the child/adolescent with CP, while siblings are a control group and answer questions about themselves. The questions concerns pain and aspects of life that can be affected by pain such as quality of life, daily function, mental health and social participation. The survey can be answered electronically or on paper.
The answers from the survey are important for planning a project to improve the pain situation for children and adolescents with CP. We also plan to conduct the survey again after a few years to evaluate any changes over time. If you want more information about the survey, you can download English versions of the Norwegian information letters on the links below.
Children 8-11 years old
Children 12-18 years old
Siblings 12-18 years old
The CPPain Program in the News
The Research Group
Randi Dovland Andersen
Co-Principal Investigator for the CPPain-program. Randi has a background in nursing and is an early career pediatric pain researcher at Telemark Hospital. She is Associate Professor at the Research Center for Habilitation and Rehabilitation Systems & Models (CHARM) at the University of Oslo. Her area of research is pediatric pain with an emphasis on assessment of pain in non-verbal children. She is a faculty member of the Canadian-lead Pain in Child Health (PICH) research training initiative and of the steering committee for the Nordic research network Pain in Early Life (PEARL).
Reidun B. Jahnsen
Senior researcher and leader of CPOP at Oslo University Hospital (OUH) and professor II at CHARM, University of Oslo. Reidun has extensive experience with systematic follow-up of persons with CP in a life span perspective and research on complex (re)habilitation interventions from a physiotherapy perspective.
Guro L. Andersen
Co-Principal Investigator for the CPPain program. Pediatrician at the child habilitation unit and leader of the Ceerebral Palsy Registry of Norway (CPRN) located at Vestfold Hospital Trust. Associate Professor and member of the CP research group at NTNU. Extensive research experience in pediatric CP and in the use of register data in research.
Consultant pediatrician and head of the Section for Pediatric Neuro-habilitation at Oslo University Hospital. Her area of research is pain in children with cerebral palsy.
Sindre Klakegg Bruflot
Patient partner in the research group. He brings to the program the lived experience with CP. Klakegg is board member of the Telemark chapter of the CP association and will represent the organization in the project’s steering group in addition to co-chairing the user panel. In his professional life, Klakegg is a self-employed graphic designer, catering mainly to the cultural industry.
Clinical scientist and knowledge translation facilitator at Gillette Children’s Specialty Healthcare in St. Paul, Minnesota, affiliated to the University of Minnesota. Strong background in pain research specific to CP and other intellectual and developmental disability (IDD) populations. Barney currently holds a dual position as clinical scientist and knowledge translation facilitator.
Her work focuses on broad campaigns aimed at thoroughly assessing chronic pain across the hospital setting.
Distinguished McKnight University Professor of Special Education and Educational Psychology at the University of Minnesota. Long-standing scientific interest in pain occurring among children and adults with IDD. Areas of specific research include assessment of pain, behavioral and biological variables associated with pain, sensory testing and relationships between pain and problem behavior such as self-injury.
Specialist in Pediatric Physical Medicine/Director of Pediatric Rehabilitation at the IWK Health Centre and Assistant Professor at Dalhousie University. Experience in the development of new models of care in pediatric rehabilitation focused on patient and family goal-centered care.
Clinical psychologist, professor and Canada Research Chair (Tier 1) in Children’s Pain at Dalhousie University. She is an internationally recognized pediatric pain researcher whose research concerns the role of developmental, psychological, and social influences on children’s pain, with a current research focus on the role of families in pediatric pain and social media for health knowledge mobilization, #ItDoesentHaveToHurt. Her work spans knowledge generation (e.g., original studies), knowledge synthesis (e.g., systematic review, guidelines), and knowledge translation (e.g., policy, public outreach). Christine is the Scientific Director for the knowledge mobilization network Solutions for Kids in Pain (SKIP).
National PI for the CPPain-survey in Sweden. More information coming soon!
Ira Jeglinsky Kankainen
National PI for the CPPain-survey in Finland. More information coming soon!
Pediatric nurse, research advisor and associate professor at Örebro University and an affiliated researcher at the Swedish Institute for Disability Research. Her main research focus is on health and wellbeing of children, adolescents and families, as well as research within deafblindness. She has specialized in qualitative methods. She is the research group’s expert on qualitative methods.
Martin Veel Svendsen
Statistician at Telemark Hospital Trust with an MSc in industrial mathematics from NTNU. He has extensive experience in project development, database design, large population studies, epidemiology, and study statistics. Svendsen is the CPPain research group’s expert on quantitative methods.
Currently finishing her PhD studies in the University of Guelph’s Child and Adolescent Clinical Psychology program. Supervised by Dr. Meghan McMurtry, she has developed and evaluated the “Let’s talk about pain” program.
Professor and research lead at the Research Centre for Knowledge Implementation and Patient Safety at Dalarna University and guest professor at Gothenburg University in Sweden. His research program includes systematic reviews, epidemiological studies, instrument development and trials, all in the field of knowledge translation and implementation research. His projects have received more than 50 mill. SEK in funding over the past 10 years.
The User Panel
Users will be closely involved throughout the program. The user panel will provide feedback on plans and data collection approaches, help develop or review written information directed towards users; help recruitment of study participants, provide feedback on study results, and help spread information about results. The user panel currently consists of two parents of children with CP – Lisa Holte and Jørgen Thorkildsen. In addition, an adolescent or young adult with CP will be recruited.
The Clinician Panel
Tone Mari Steinmoen