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Below are the studies currently running within the Centre for Pain Research that are recruiting participants. If you are interested in taking part, details on how to make contact are given with each study.
- Lending an Ear: iPEER2Peer plus Teens Taking Charge online self-management to empower children with Arthritis
- iCanCope PostOp Scoliosis
Childhood arthritis is common and makes everyday activities difficult for young people. It is a chronic illness that can cause children to experience pain, fatigue and emotional upset. This makes it more difficult for children to see friends and do enjoyable activities.
When children become teenagers they start making more choices about their health care. But most teens do not learn how to take care of their arthritis on their own or get the help they need to be able to do so. Many teenagers with arthritis have also never met another teen living with arthritis. This is where online programmes and peer mentoring can help. Canadian researchers developed “Teens Taking Charge (TTC) Managing Arthritis Online” and “iPeer2Peer” to help teens learn to make decisions about their health, meet and be inspired by other young people living with arthritis. Teens who have gone through the Teens Taking Charge and iPeer2Peer programmes showed improvements in their ability to take care of their health, their understanding of arthritis and they have less pain.
The Centre for Pain Research team in 2016 worked with Irish teenagers living with arthritis, their parents and health care providers, using individual and focus group interviews; and they expressed interest in both programmes. The ‘Lending an Ear’ study will pilot test whether an integration of iPeer2Peer with an Irish version of Teens Taking Charge is something Irish teens will use and be helpful in teaching teenagers to take better care of their arthritis, (i.e., is it effective and feasible?).
The overall goal of this combined programme is to improve the quality of life of Irish adolescents with juvenile idiopathic arthritis (JIA).
This project is a collaborative partnership with Dr. Jen Stinson’s team in SickKids Hospital Tornoto and key stakeholders to ensure that it will sustainable even after the research part is finished.
The Paediatric Rheumatologist to patient ratio for Irish children is the second lowest in Europe.
This project will pilot an Irish adaptation of the Canadian “Teens Taking Charge (TTC): Managing Arthritis Online” programme combined with novel peer mentoring (iPeer2Peer).
iPeer2Peer uses Skype conversations between young adults with JIA and adolescents with JIA by guiding the teens through the TTC,12 module, program. While both TTC and iPeer2Peer individually have been found to be effective in improving JIA-related knowledge and self-management, they have not been combined before. We hope in putting them together we will see even better results, as we know individual tailoring is crucial to meet adolescents’ needs more effectively.
So after ‘Lending an Ear’ (36 months starting in September 2017) the end product will be a culturally appropriate clinical tool developed in partnership with adolescents with JIA, their parents, health professionals and JIA organizations (Arthritis Ireland and iCAN), that will overcome current barriers to accessing self-management care and peer support.
So far we have recruited and trained a Young Person Advisory Panel (YPAP) who will work with us throughout the project to ensure the Teens with JIA continue to have a voice that is listening to.
February 2018 we will be filming 4 Irish videos to add to the TTC website in Dublin and Galway.
March – May 2018 we will be recruiting young adults (18-25 year olds) who lived with JIA through their adolescence to attend a 2 day training and then receive on-going support as peer mentors for the research and possibly beyond.
Summer 2018 we will be recruiting 60 families, with 12-18 year olds teens with JIA, to work with us in a pilot Randomised Control Trail.
See our recruitment poster below
If you are interested in becoming involved in any aspect of our project please contact:
Scoliosis is a medical condition where the spine curves sideways in a C or S shape, with adolescent idiopathic scoliosis (AIS) being the most common type. Treatment for AIS is dependent on the extent of the curve, with spinal fusion surgery carried for severe deformities or to correct progressing deformities. Research has reported that 15-25% of such adolescents suffer from recurrent post-surgical pain. Unrelieved or poorly treated post-operative pain can lead to numerous poor health outcomes such as: delayed re-mobilization, increased opioid use, pain-related problems and reduced health-related quality of life, especially in the two weeks after surgery.
Greater confidence in one’s ability to manage pain, or pain coping self-efficacy, contributes to decreased post-operative pain and lowered risk for chronic pain. Growing evidence supports the use of mobile health technology (i.e. mHealth and eHealth) in the day-to-day maintenance and upkeep of health and health behaviours; however, the majority of this research has been carried out with desktop web-based technology, rather than mobile devices. Wireless internet-connected handheld devices (e.g. smartphone devices) may improve access to pain self-management for adolescents with post-operative pain, who are at increased risk for under-treatment of pain and disruption in daily activities.
The Centre for Pain Research at NUI Galway and SickKids Hospital Toronto (in association with Dr. Pat Kiely and Dr. Kevin McCarthy in Our Lady’s Children’s Hospital, Crumlin) are adapting a pre-existing post-surgical pain self-management smartphone application, iCanCope PostOp, to make it specific for adolescents who undergo surgery for scoliosis (iCanCope PostOp Scoliosis). The current iCanCopeTM integrated smartphone application and website includes four core features: symptom tracking; SMART goal-setting to improve pain and functioning; a toolbox of pain self-management coping strategies; and peer-based social support. The core aim of the current research is to supplement the information provided, following review by ‘the experts’ (Health Care Professionals, adolescents who have undergone surgery for scoliosis in the last 3 months and their parents/caregivers); and to expand the library of coping skills for post-operative pain in adolescents with scoliosis living in Ireland.
Specifically, the project has been divided into three phases: (1) adapt the comprehensive, theory and evidence-based iCanCopePostOp app, based on key stake holder feedback; (2) examine the usability, accessibility and acceptability of the newly adapted iCanCope PostOp Scoliosis app, ensuring it meets the needs of adolescent scoliosis patients; and (3) evaluate the efficacy of iCanCope PostOp Scoliosis on adolescents’ post-operative pain and the quality of life of following scoliosis surgery through a pilot randomized controlled trial.
Currently, the project is in its first phase and the team are recruiting Health Care Professionals who work in the area of scoliosis and acute post-surgical paediatric pain; adolescents who have had scoliosis surgery in the past 3 months; and their parents/caregivers, to take part in either focus groups or individual interviews in January 2019.
If you are interested in becoming involved in our study please contact: