Positive attitudes: change in interactions over the weekend

Interviewees described an increase in young people’s sociability and confidence over the weekend. When young people arrived at the venue, they were described as shy and withdrawn, but as they settled in and attended the first social activity — the DJ on Friday night — young people became more sociable and outgoing. Interviewees described this pattern and its repetition at previous FYSOT.

“I think you can see an immediate impact in which young people, while they’re there, will really come out of their shells (…) our young people that have really low self-esteem, you can just see them throughout the weekend blossoming.” (019)

The observations corroborated this theme. For example, on Friday young people remained at their dining tables and danced later in the evening; on Sunday, dancing and socialising with other groups occurred immediately away after dinner (online supplementary appendix 1 shows programme). Another example was observed in the increased numbers of young people recording videos at JTV Big Brother chair as the weekend progressed. They shared how they had met and become friends with other young people over the weekend. Young people from different groups were observed interacting as a result of a quiz activity aimed at learning information about other groups; one individual in particular was observed on Friday evening first alone in the lounge area, then alone at the table, not smiling and then being invited by other young people to participate in the quiz. Following this, they were then observed dancing and connecting with other young people on that and subsequent nights.

When reflecting on the weekend at FYSOT, interviewees shared that FYSOT helped young people build their confidence or how it had given them back their confidence.

Belonging: you are not alone

FYSOT gives young people an opportunity to be with other young people with cancer and feel accepted and understood, which may not happen outside the programme, as described here:

“their normal friends don’t understand them, they don’t get it whereas their cancer friends, as they put it, they do. They understand where they are coming from, they understand the issues that they have.” (006)

Young people described that at FYSOT they did not have to explain why they had not completed their school exams (eg, General Certificate of Secondary Education (GCSEs)) or why they may nap in the afternoon (eg, due to fatigue).

Interlinked with this was a sense of freedom of being allowed to be themselves. The shared experience of a cancer diagnosis allowed them to talk about who they were as a person:

“I think it socialises them with other people in the same shoes as them (…) with other young people that can empathise and can understand (…) it just cuts their story short and they can get on with being themselves and not having to explain themselves.” (013)

Young people described two worlds, the “cancer world” and the “normal world”. Professionals and young people discussed this paradox of feeling normal, not the odd one at FYSOT compared with feelings of not belonging in the outside (normal) world.

“just having a really good time (…) They didn’t have to worry that, you know, they had one leg, or they didn’t have their hair, because everybody was in the same situation, and you didn’t have to think about that at all.” (004)

This concept was repeated throughout the weekend, the idea of not being alone, having cancer friends and belonging.

“I think they can often feel really isolated in, you know, their school friendships, or social friendships (…) and they meet somebody else that’s going through something similar to them, that’s a really powerful thing (…) a lot of young people will say, ‘I wouldn’t have made it through this without my cancer friends.’” (019)

Professionals shared how young people discovered during FYSOT that recovery was not just physical but also involved social interaction, peer and psychosocial support. Being at the residential programme, meeting other young people and learning how they had coped with challenges allowed young people to benefit and learn from the shared experience of others.

Young people mentioned FYSOT helped to address issues they had not thought about before, as there had not been space outside the programme for them to reflect on their experiences and deal with emotions. While it could be difficult to express feelings due to the desire to protect their family, the shared experiences at FYSOT allowed young people the freedom to explore and understand their experiences and emotions freely. For example, a young person shared it was like “looking at someone and recognising what you had been through.” Humour also connected “cancer friends”, as observed in a video recorded by a group on Saturday — young people shared how cancer jokes to the “outside world” could seem offensive; however, at FYSOT it allowed a sense of normalcy, which they valued.

Recreation: having fun and trying new activities

The intensity of emotions and experiences was balanced by exposure to (new) recreational and leisure activities. For some, attending FYSOT was their first experience of being away from family (first time ever or first time since diagnosis) and with other young people. A weekend of sharing living spaces with a group of other young people (and professionals) allowed exposure to cooking, cleaning or simply making a cup of tea.

Social activities included a DJ, a paying bar, Big Brother chair, photo booth, chill out area, workshops (eg, make-up, jewellery making), complimentary therapies (eg, massages) and swimming (online supplementary appendix 1).

The consumption of alcohol is permitted by young people at the over 18s programme, as it is believed to facilitate normalisation of experiences in a safe environment (they could drink but were monitored and supported by professionals).

“we had an eighteen-year-old boy who'd never been out (…) it was the first time ever, he’d stood there at a bar, with a male friend (…) and had a drink. He will say to this day, that was his most amazing experience, because he was doing something that a normal young man did (…) we were monitoring and working with him.” (018)

Increased knowledge: learning from talks and other young people

From inception FYSOT has included young people sharing their story on the main stage. The benefit of this was acknowledged in the interviews:

“I think it’s just seeing another young person get up and speak about, kind of, thoughts and feelings and fears and anxieties that they have (…) seeing other young people who are, you know, fit and well and healthy, or sometimes not, getting up and speaking about experiences that they’ve also had.” (010)

Listening to other young people sharing their experience was powerful and empowering, as one interviewee described “they come away feeling reassured, and feeling positive that they can do things” (017). However, there were potential caveats to listening to others’ stories, such as feelings of “survivors’ guilt” (eg, when young people who had relapsed or were palliative shared their stories). Professionals were aware of this and were there to support young people.

Learning took place through the formal presentations and informally through sharing of experiences and coping strategies between young people. One young person from the steering committee described:

“So it’s just like little insider tips that you get to know about (…) it’s the link to the cancer community (…) which I think people definitely take away from it, whether it be the directly educational stuff from the talks, or whether it just be talking to other patients.” (026)

Learning from others “down the line” or that “have come out the other side” was repeated in the interviews, shared in some presentations and also in peer-to-peer interactions observed. Young people were inspired to see someone with a similar diagnosis “further down the line”; it offered hope and practical examples of how to cope with emerging issues and emotions:

“listen to people that have gone through that with them, and have come out the other side, and given them advice of how they did it.” (019)

The structured presentations were catalysts for young people to share and discuss their views with other young people and professionals accompanying them when they went back to their chalets. For example, in this FYSOT the topic of death and dying was approached in two plays and the conversations that followed were very difficult, but it gave the opportunity for young people to talk about friends they had lost and about their feelings.

Similarly, presentations on relationships and fertility facilitated discussions about young people’s concerns about fertility and offered advice on who to contact when they went back home. Sexuality was a topic discussed during presentations and also in the safe environment of the group chalets with other young people who understood them and professional support (eg, young people discussed fears about disclosing their cancer to potential romantic partners).

Being with other young people: spatial proximity to others

Interviewees described how young people prior to FYSOT might have had limited peer contact “so they truly could be the one teenager stuck in a side room (…) Just over the course of the weekend, him realising that there were other people his age with the same disease, and they were doing okay (…) The change in him was quite impressive, and from that it just carried on” (015).

Being in a room with other young people with cancer (n=200) was described as overwhelming, astonishing and empowering:

“I could see (…) how excited they were, how impressed and amazed they were, to walk into a room where there were that many young people that they could relate to.” (019)

This context allowed young people to share their feelings: “You know that no-one’s judging you, so they’re all allowed to be very emotionally free” (001); feel positive, confident, relaxed and accepted. The empowering effect of being with other young people and the respite from limiting beliefs and being self-conscious about their body image is illustrated in this example:

“she hadn’t been swimming since she’s had her cancer diagnosis (…) people were taking their wigs off and leaving them at the side of the pool. Everyone just jumped in and everyone had scars and bald heads and all that, but it was just the first time for her that it just didn’t matter (…) It was just really an inspirational moment for her. That’s what Find Your Sense of Tumour is all about. It’s just about being yourself and remembering who you are as a person.” (012)

Support and guidance from professionals

The role of accompanying professionals was pivotal to the impact FYSOT had on young people. Professionals invited, organised, accompanied and supported young people throughout. The level of support and preparation prior to the event varied between hospitals. Some professionals organised activities prior to the programme to engage and support young people; this was viewed as potentially improving young people’s experience at the event. During the event, professionals were observed guiding young people, showing them what they could do and what was available.

Although not all professionals shared the chalet with young people, there was a shared belief that being present allowed better support for young people, improved their relationship with the group and contributed to their knowledge of how young people support each other and what their needs were.

“they’d built up a good relationship with each other, and with us, that we weren’t going to judge them, and they weren’t going to judge each other. That’s what the weekend created, it created a really good bond, and it gave them the confidence to talk about things that are a bit difficult.” (003)

Professionals were advocates for young people and fed back concerns/problems to organisers at regular meetings throughout FYSOT.

Conference-intentional programming

The three key elements of the residential programme were peer-to-peer support, having fun and learning; as one participant described, FYSOT is “about them [young people] having a good time. Having a good time most of all, meeting other people. Learning about what’s going on with them” (020).

Intentional programming had young people at its core. Young people’s feedback was part of the residential programme and contributed to changes in it (eg, the balance between presentations and free time changed throughout the years as a result of young people’s feedback).

There was a culture that emphasised respect, caring, acceptance and fun through listening, treating young people as capable, providing empathy and connection. This professional shared young people’s feedback:

“they felt like they were treated as adults, they felt like they were respected and the information was given in a funny way. It was really useful information and it was fun.” (006)

Observations supported this. On arrival, young people were received by friendly, welcoming volunteers and organisers who guided and informed them. The culture of acceptance and support was also observed between young people, who were from the onset supporting others with mobility constraints. This extended to the dance floor, where groups were observed dancing with those in wheelchairs.

Communication on stage was also relaxed. A further example of the relaxed and fun environment was the showcase (online supplementary appendix 1) performed on the second night.

“the showcase (…) clapping and cheering on other cities (…) there’s just always a really nice feel in the room when we do that.” (019)

Observations recorded during evenings included young people, volunteers and organisers smiling and laughing, a relaxed environment, with dancing and singing.

Fun was also considered integral to presentations as described here:

“I think fun is essential (…) it lightens the mood and it makes you listen and learn more when the serious things come in.” (017)

Education during the event was balanced between topics covered and presenters (young people sharing their experience, professionals and inspirational/motivational speakers). For example, on Saturday a young person did a presentation on mental health difficulties after treatment and how to seek help, followed by handset questions and a presentation with a specialist on fertility focused on the effects of chemotherapy on fertility (see online supplementary appendix 1 for more details on presentations). Attendance on Saturday was packed with full attention from young people, with fluctuations on Sunday. Young people also shared their views during three sets of handset questions that allowed immediate visualisation of the group answers to topics previously identified as relevant to young people and used for consultation and research planning.