Why are Groups Important for Young People Living With Chronic Health Conditions? A University College London Hospital Perspective

This special issue contains nine articles describing the diverse and innovative group work the Child and Adolescent Psychology service at University College London Hospital (UCLH) has co-created with young people living with chronic health conditions and their families.

It begins with a paper focussing on the steps we have taken when developing groups that ensure that young people’s voices are centred from the beginning. We then have four papers about specific groups we have developed: A living with pain group, a Mindfulness group for parents, an evaluation of the Beads of Life groups for young people living with cancer and young people’s experiences of being Peer Trainers in connection with the Beads of Life groups. As a response to the pandemic we have a paper discussing online adaptations to our tree of life and beads of life groups, including trialling hybrid groups. We end this special issue with three papers thinking about supporting staff: a peer reflective group for assistant psychologists, a narrative approach to running away days and finally reflections on a model of supporting staff remotely during the pandemic.

Why does our service believe it is important to include groups as part of the therapeutic offer to children, young people and parents who have a chronic health condition?

For many young people and their parents, prior to having a chronic health condition, they had been developing an account of who they were, a storyline about their lives and their relationships that made sense. The arrival of this unwelcome and unasked for medical condition can cut them off from that account of themselves. It can create a rift so they no longer have a sense of coherence; they no longer have a storyline that makes sense of their experiences. Their storylines also become different to their friends and they may no longer feel that they “fit in” with their peers. For those who have had to navigate a health condition from birth or early childhood, they can feel a sense of difference right from the beginning.

As you read the various articles in this special issue you will notice that at the heart of all the groups run at UCLH there is a commitment to co-create a sense of coherence across all the different narratives in the young person’s life. This includes the stories related to living with a chronic illness and the challenges this can create, as well as hearing about the many other stories in the young person’s life which are outside of the influence of these challenges. We have a commitment to help young people tell their stories in ways which will make them stronger (Wingard & Lester, 2001).

Sabine Vermeire in her book, “Unravelling trauma, weaving resilience with systemic and narrative therapy” (in press), discusses the importance of three concepts: coherence, agency and belonging. Running groups and meeting other young people who have had a similar experience can re-create a sense of belonging. Many of the groups have foundations in collective narrative practice, highlighting the importance of community (Denborough, 2012). The recurring feedback that we receive from young people on their experience of the different groups, has included; “It’s such a community”, “It’s really nice to talk about something other than ‘the medical condition’ but with people who understand the experience. You feel understood”, “I had a lot of things in common with the other people who were there”. One group wrote a song about the experience and the first line of the song is “Feeling you are not alone”. They have also reflected that their involvement in the groups offers them a unique experience: “We miss out on so much and don’t get to do what our friends do, but this way we get to do something that other people don’t get to do!“.

Living with a chronic medical condition can disrupt a young person’s sense of personal agency, of being able to influence their own lives. Their bodies may have let them down and they spend a lot of time with doctors, nurses and other NHS professionals that are experts in their medical conditions. They can experience a lot of procedures and treatments being done to them, which in turn can leave them feeling like they have even less influence over their own lives let alone the ability to influence the lives of others. Many of our groups use outsider witnessing practices (White, 2000). This is when we ask one member of the group to tell the stories of their lives whilst the rest of the group listen. After the telling, the group listeners are asked to speak about what stood out from the stories, what touched them or resonated with them. They are also asked what they will take away from having heard the stories. Having an audience strengthens these new identity stories Hearing the impact of their stories on others and the contribution their stories make to others’ lives is a notable validating experience. This helps re-create that sense of personal and relational agency.

Many of our groups use ‘peer mentors’ or ‘experts by experience’ whom we refer to as Peer Trainers. This creates a way of offering our young people an opportunity to give back as well as positioning them as consultants to us. Epston and White reflect on the powerful process of consulting with clients: “When people are established as consultants to others, they experience themselves as more of an authority on their own lives” (pp. 282-283, Epston & White, 1992, Chapter 13). When Peer Trainers return to help us run future groups, they can observe the effects that they have on the lives of other young people who are attending the group for the first time. This feeds their sense of relational agency. The young people attending the groups for the first time also feedback the power and significant value of having peer trainers in the groups, helping them to engage and feel understood and more comfortable. They often see them as positive role models, in how they as older teenagers and young adults manage their lives alongside the health condition.

Vikky Reynolds et al., (2021) reminds us that “believed-in-hope” is not optimism or positivity but the hard work of resisting despair when your body no longer works as it should. She also reminds us not to abandon people to personal suffering and Kaethe Weingarten (2010) reminds us that hope can be a verb. Running groups is a way of young people “doing hope” together. Doing this work together also brings hope to the facilitators of the groups. Everyone in the department acknowledges that developing and running the groups is hard work and also very rewarding and fun. They allow us to bring in our own passions and creativity as well as work closely with our multi-disciplinary colleagues, which is very sustaining. The groups have also enabled us to connect in less traditional, more personal ways with young people for instance whilst sharing lunch with the young people as part of the group experience.

As facilitators of these groups we are aware of the helpfulness of Madsen’s ideas around disciplined improvisation (Madsen, 2011). Each group has a structure and the intentions of each part of the group are clear, which is the discipline. However, once the young people join the group the facilitators need to be able to improvise. It is within this disciplined improvisation that the magic of groups happens.

We invite you to read these articles and then take the ideas into your service and improvise, adding your own personal touches together with following the feedback of your clients. Please get in touch and let us know where these take you and the people you work with.