Jane Muirhead is a Perth Occupational Therapist from EASpain, Education & Support for Pain. Jane is Project Leader for a new initiative called “Kids’ Overcoming Pain Education (KOPE)” Programme, a pilot study funded by Telethon7 and being hosted through Arthritis & Osteoporosis WA, with research being conducted by Curtin University. I asked Jane to explain more about this exciting project.
KOPE Interviews: August/September 2013
KOPE Courses: October/November 2013
Q What is the KOPE programme?
Jane: The KOPE programme is a one and a half day educational workshop for children and adolescents with persistent pain conditions and their parents. The aim of the workshop is to assist the young person and their family to make sense of and explore strategies to better enable them to handle the challenge of living with ongoing pain. The programme will address pacing, particularly balancing activity and rest to reduce flare-ups, mood, sleep, social and study issues. The skills will be presented in a fun and interactional way. The emphasis will be more on empowering the young person and their family members to work out their own self-management plan. We want to improve their confidence in ways to handle their pain in all aspects of their life.
Q. Has it be trailed anywhere else?
Jane: KOPE is loosely modelled on a one day programme at the Boston Childrens’ Hospital in the USA for children with chronic pain called the “comfortability program”. What struck me as sensible about their approach was that parents and the young people are provided with education and ideas in separate forums. So parents have a workshop in one room, and the children/adolescents have their own workshop in another room. Parents get a chance to really gain support from one another, let off steam, and work out practical strategies with the factilitators without the need to be concerned that their child will hear what they have to say. Equally the young person gets a chance to – hopefully – enjoy their day without needing to be worried about Mum or Dad. We are presenting the story of “The Pain Train” which explains why pain persists and what can help in an age appropriate way and using an interactional approach with different media such as music and art.
Q. Who would benefit from the KOPE programme?
Jane: Any child/adolescent within our age range (two groups 8 -12 – 13 – 18) with persistent or recurrent pain (migraines, abdominal pain, muskulo-skeletal for example) that has been present for longer than 3 months and is having an impact on family life, social and school engagement and mood in the young person. Unfortunately we are unable to accept young people with a history of cancer or severe mental health/self harm issues due to this being such as short community based programme with limited follow-up resources. we need to ensure everyone who participates is safe to do so from all aspects of their health care.
Q. What is the time commitment?
Jane: Because this is a research project parents and children will be required to attend an assessment interview and to fill in a number of questionnaires before, at time of study at follow-up and then four weeks later. Obviously this can be a bit of a chore so we are making it as easy as we possibly can. However, we are hoping that this research will aid us in rolling out more comprehensive programmes for children with persistent pain in the future.
Q. Who is running the sessions and what experience do they have working with people in pain?
Jane: There is an occupational therapist, physiotherapist and psychologist all with extensive years of experience working with chronic pain conditions and also with childrens’ health. Additionally we have two “pain champions” who will co-facilitate; A 17 year old who is an amazing role model for young people in how she has handled ongoing pain of her own since childhood from a severe muskuloskeletal condition and an adult (for the parents’ programme) a nurse with chronic pelvic pain and again a wonderful role model in her management of her condition. We figure they will have a vast amount of knowledge and ideas to share from the direct experience of living with pain.
Q. How have the needs of chronic pain sufferers be considered in the design of this programme?
Jane: Having worked with chronic pain sufferers of all ages for many years I am very aware of the need for comfort and the ability to have ways to soothe pain both physically and emotionally. We aim to ensure the environment is as friendly towards this as possible. Young people will be encourages to bring anything that aids or supports them during the day (heat packs, toys, cushions, etc). We will be providing alternatives such as mats to lie down on, and regular movement will be encouraged as part of teaching pacing and learning to listen in to what their needs are.
We want KOPE to be an inviting, not threatening experience. We want children and their families to feel safe and that their needs will be heard. Too often their is a history of treatment appointments with long wait times and not too pleasant medical tests that can leave young people and their families wary of new approaches. That is understandable, so we are actively working to minimise that on KOPE. Also Having our “pain champions” feedback and doing training sessions with them has enabled me to fine-tune aspects of the programme to more clearly meet the needs of the young person and their families.
Q. What do you hope people will get from the KOPE programme?
Jane: Validation, improved confidence in their capacity to cope and a sense there is a pathway through the pain. We will be exploring ways and providing support to young people and families to navigate school demands, sport and social issues. If KOPE doesn’t enable young people and families to start to make changes that work for them in the “real world” then we are not doing our job right!
Q. How do people get in touch with you if they’d like more information or to sign up?
Contact Jane directly on 0402 277 098 with any enquiries, or email Jane@easpain.com.au
More information about how to sign up can be found on Arthritis WA website: http://www.arthritiswa.org.au/