It is the third clinic of the week and in walks 14-year-old ‘Ashleigh’, a young person with type 1 diabetes. The session begins and an all too familiar dialogue ensues. Ashleigh is disengaged with the team and has poor blood glucose control. She presents with low motivation to change her behaviour and is at increasing risk of seriously damaging her health. Like many on our caseload, Ashleigh is experiencing ongoing conflict within her family, has difficulties managing her condition at school and is very reluctant to talk to friends or family about her thoughts and feelings. During discussions with these service users, we would often hear the phrase ‘Nobody understands what it is actually like to have diabetes’. We had to give it to them – they had a point.
No matter how passionate and knowledgeable we are about diabetes as psychologists working in paediatric health, we felt unable to truly relate to these young people sitting in front of us, and it felt as though this was at the crux of many of their presenting problems. This left us feeling both disappointed and dissatisfied in our work; something had to change.
We began to ask different questions, and our young service users were more than happy to provide their opinions! The young people coming through our service had the answers and it was our prerogative to listen and adapt the service to meet their needs.
From experience, it was evident that a large proportion of our young service users were not keen on attending traditional psychoeducation events run by the team. They shared their perceived barriers to accessing services, such as feeling alone in managing their condition and wanting to be able to relate to others in the same situation. They expressed a need to feel heard by others with the condition, so that they could experience being the ‘same’ as opposed to ‘different’.
Literature suggests that these barriers to engagement are not exclusive to young people with diabetes; teenagers with a range of long-term conditions face challenges in making lifestyle adaptations that can put pressure on several areas of their life, such as socialising, school, family, mood and daily activities. From this, those with chronic conditions often feel more isolated, different and less socially competent than their peers.
In addressing these difficulties, healthcare providers have developed social interventions to provide peer-support. Findings from these suggest some inconsistencies in the long-term effects of peer support on treatment adherence, although a growing body of research suggests that peer-support amongst those who share long-term health conditions may have benefits in both facilitating adjustment to chronic health conditions and coping with the challenges they pose to adolescent life. Studies suggest that having a social support network comprising young people with the same chronic condition provides an alternative to common automatic reactions to their diagnosis, such as social withdrawal. Peer-based interventions have found promising outcomes relating to increased self-confidence, increased acceptance and empowerment, improved condition-related knowledge and an increased ability to be open with others.
We recognised the potential for introducing a peer-based intervention into our service. Following group discussion, feedback from young service users and wider services, we developed the idea of a ‘Feelings Day’.
The event was shaped with a number of aims in mind: to enable young service users to meet others with diabetes, share their thoughts and feelings about living with the long-term condition and develop their confidence in talking about it. Within this, we facilitated informal activities and games based on the acceptance and commitment therapy (ACT) framework, in order to create a safe environment where the young people were gently introduced to psychology whilst interacting informally with their peers. By introducing psychological principles in this way, we hoped the young people would develop strategies to help them relax and manage difficult situations more positively, whilst having fun, and that this would help to foster greater engagement with psychological services in this population.
We were mindful that we had planned the day during the school holidays, so knew we would need to think carefully about how to motivate the girls to attend. When considering the interests of those on our caseload, we decided to entice them to attend with the promise of beauty treatments (something that would be out of the question in a clinical setting!). We wanted them to feel that they were being treated as adults, as many would be transitioning to the adult diabetes service in the years to come. We also felt it would be important to hold the event away from the hospital site, in order to reduce any anxiety around seeing the psychology team or coming to a clinical setting.
With the support of our local community and with the goodwill of local beauty therapists willing to volunteer their time free, we had secured nail technicians and the use of a space at local colleges and community centres to hold ‘Feelings Day’. We incorporated a shared lunch, as we felt this would help normalise eating meals and diabetes management.
Although we felt confident that we could improve the psychological wellbeing of the girls, there were several moments of concern leading up to the day. We were presuming the girls would attend, but acknowledged that some may not. Engaging with our client group outside of the usual context of clinic and therapy sessions was unfamiliar for both us and the girls. We acknowledged the uncomfortable feeling of being pushed outside of our comfort zones (something, no doubt, that we expect the young people to do every time they come to see us!). The team had paid for the venue and psychological resources, which added pressure to make it a success. We were also relying on the goodwill of the community to provide the free beauty treatments and were mindful of the need to balance the expectations of the girls whilst not taking advantage of the beauticians’ time.
We intended to use ACT-based activities and games to provide structure and guide the purpose of the day. For instance, we began the day by initiating word association games to help normalise words associated with diabetes and generate discussion around thoughts and feelings. We provided craft materials, which the young people used to make bracelets and keyrings with beads that represented different feelings that they associated with having diabetes. We found that this generated discussion around their individual experiences of adjusting to the condition. One young person also chose to draw a ‘road map’ of their journey with diabetes, including identifying barriers (road blocks), times when they've had to make difficult decisions (a fork in the road) and times where they've felt stuck (roundabouts/dead ends). We then presented popular celebrity quotes to introduce the young people to ‘values’ and generate discussion about what they felt was meaningful in their lives. We ended the day by introducing a simple mindfulness exercise to introduce the idea of exploring thoughts and feelings from a distance, in a curious and non-judgemental way.
As with anything new and unfamiliar, some things went to plan on the day and others did not. Despite our best efforts, engagement in our planned activities varied across the course of the day, with many of the girls preferring to interact amongst themselves whilst indulging in treatments that the beauticians could offer. What’s more, our outcome measures did not demonstrate significant change post-intervention. This initially left us feeling disappointed and led us to question whether we had let the social aspect of the day outweigh that of the intervention. However, when reflecting on this, we recognised the importance of being mindful that what we hope for someone to get out of an intervention is not always the same as what they themselves hope to get from it; we have learnt the importance of managing our own expectations. We feel that, in a growing culture of targets and accountability, it is vital not to lose sight of the person receiving the intervention and what they would recognise as a valuable outcome.
From this stance, we could see that we had perhaps created an ‘alternative’ safe therapeutic space, whereby we could take a step back and allow the girls to share their experiences with one another. A space where they did not look to us, as we perhaps expected, to guide and prompt them through each activity – rather, the activities simply created a context for discussion with one another and ourselves, if they so chose. Through this, the girls appeared to benefit in terms of relationships and engagement, which were perhaps difficult to measure on the day, yet may have long-term benefits for their wellbeing and health management in the future.
The girls visibly grew in confidence throughout the day; they were able to open up to each other about their condition and through this, they shared their personal experiences of managing it. They were able to honestly share their feelings in a safe environment, and many said that they would feel more confident to talk to people their age about their condition; something that had previously elicited feelings of fear and shame. ‘There is no point keeping things inside, because you can’t’, one said.
In line with this, feedback from the day suggests that making new friends was something that the girls particularly valued and that the day contributed to their need for social support. Many young people commented that they felt more confident engaging with psychology after meeting the team in a less formal environment, and this was subsequently reflected in service figures, which suggested a fall in DNAs in the paediatric diabetes service.
As psychologists working in a wider Medical Psychology Service, opportunities to work together in this way are few and far between. Through developing this intervention, we enjoyed and valued the opportunity to work together in pursuit of our shared goal of helping young people improve their health management. We were all overwhelmed by the fantastic support that was offered by our local community, particularly in terms of the free treatments and ‘goody bags’ that we were able to provide the girls with. We recognise the day-to-day pressures that we are all under with regard to our clinical caseloads and service demands, and we really valued the opportunity to try something new and different from our usual ways of working. We are mindful that proactive change is inevitably dependent on management and organisational flexibility. In this, we appreciate that our service managers value creativity and innovation, and we found them to be very receptive throughout the process of taking Feelings Day from the point of idea formulation through to fruition.
Observing and interacting with our young service users outside of the hospital setting not only benefited the girls themselves, we feel that it also helped us to learn more about the difficulties they face and the resilience they show when overcoming challenges posed by their chronic illness in day to day life. This experience has also encouraged us to take part in further team events and see past our once perhaps rigid therapeutic boundaries. For instance, our team chose to input into a residential activity holiday, which we had previously avoided due to it feeling uncomfortable and unfamiliar. Albeit with careful consideration in terms of groups, responsibilities and therapeutic boundaries, it was inevitably a fantastic experience where we were able to learn huge amounts about the day-to-day challenges of living with diabetes and also provide informal opportunities for the young people to talk to us and each other about their thoughts and feelings.
All in all, this experience has been valuable for all involved for a variety of reasons, many of them unforeseen. We are often told that service users should be at the heart of everything we do, and yet we can regularly feel constrained by the context of limited resources and targets when trying to meet their needs. This experience has brought us face to face with the professional challenges that come with being proactive in what is often a very reactive system, yet it has also brought us closer to supporting and improving the experiences of the young people that we work with which, after all, is what led us into the profession in the first place.
Casier, A., Goubert, L., Gebhardt, W.A et al. (2013). Acceptance, well-being and goals in adolescents with chronic illness: A daily process analysis. Psychology and Health, 28(11), 1337–1351. doi:10.1080/08870446.2013.809083
Denny, S., de Silva, M., Fleming, T. et al. (2014). The prevalence of chronic health conditions impacting on daily functioning and the association with emotional well-being among a national sample of high school students. Journal of Adolescent Health, 54(4), 410–415. doi:10.1016/j.jadohealth.2013.09.010
Emerson, N.D., Distelberg, B., Morrell, H.R. et al. (2016). Quality of life and school absenteeism in children with chronic illness. Journal of School Nursing, 32(4), 258–266. doi:10.1177/1059840515615401
Martinez, W., Carter, J.S. & Legato, L.J. (2011). Social competence in children with chronic illness: A meta-analytic review. Journal of Pediatric Psychology, 36(8), 878–890. doi:10.1093/jpepsy/jsr035
Myers, J.E., Willse, J.T. & Villalba, J.A. (2011). Promoting self-esteem in adolescents: The influence of wellness factors. Journal of Counseling and Development, 89(1), 28–36. doi:10.1002/j.1556-6678.2011.tb00058.x
Oris, L., Seiffge-Krenke, I., Moons, P. et al. (2016). Parental and peer support in adolescents with a chronic condition: A typological approach and developmental implications. Journal of Behavioral Medicine, 39(1), 107–119. doi:10.1007/s10865-015-9680-z
Pinquart, M. & Teubert, D. (2012). Academic, physical, and social functioning of children and adolescents with chronic physical illness: A meta-analysis. Journal of Pediatric Psychology, 37, 376–389. doi:10.1093/jpepsy/jsr106
Sattoe, J.N., Jedeloo, S. & van Staa, A. (2013). Effective peer-to-peer support for young people with end-stage renal disease: A mixed methods evaluation of Camp COOL. BMC Nephrology, 14(1), 279. doi:10.1186/1471-2369-14-279
Wood, E. (2014). Patient-to-patient peer support in renal care: What, why and how? Journal of Renal Nursing, 6(5), 239–243.
BPS Members can discuss this article
Already a member? Or Create an account
Not a member? Find out about becoming a member or subscriber