Family Residential Weekend – Fife
A story by Crohn's & Colitis UK
In April 2019 we held a residential camp, to support disadvantaged children who are living with a chronic illness: either Crohn’s disease or Ulcerative Colitis, which is inhibiting their quality of life. Some parents and siblings also participated. The camp was located at Tulliallan Castle in Fife.
What Family Residential Weekend – Fife did
We ran a successful residential weekend camp in Scotland, in partnership with our delivery partner, Over the Wall, at Tulliallan Castle in Fife in April 2019 for sixteen families comprising 24 children and 26 adults. Camp addressed the Better Breaks Priorities of independence, sports and leisure activities, diversity, transition and under fives.
Camp was specifically for children and young people aged up to 18 who are living with Crohn's disease or ulcerative Colitis, which is seriously impeding their life and affecting their psychosocial wellbeing. Parents and siblings also attended camp and the programme catered for all participants.
Priority was given to those who met the following criteria: child aged up to 18 with Crohn’s Disease, Ulcerative Colitis, degree of disease severity, assessed and substantiated by their clinician and for families on low incomes.
The weekend comprised of a programme using the Therapeutic Recreation Model (TRM), a four-step programme - Challenge, Success, Reflection and Discovery. It comprised 25 sessions of structured fun and challenging activities, including swimming, rock climbing, inflatable assault course, crazy science, archery, graffiti art, sports, ‘spy school’, music and drama.
Each child participated in 3 x 2-hour sessions plus the family sessions. Sessions were shaped around personal interests whilst providing opportunities for challenge. This incorporated reflective time where children were encouraged to acknowledge their own achievements and those of other campers to recognise their capacity to overcome challenges.
Each child had their own dedicated volunteer ‘buddy’ to provide one-to-one support and to help them to overcome challenges and develop new life skills, whilst being part of a team.
We also provided three parent-only sessions, to provide the opportunity to socialise, make connections with other families and feel free of caring responsibilities knowing their child/children were being safely looked after. These included social time and a focus on the sources of support and information available from the Charity and signposting to other support services.
What Crohn's & Colitis UK has learned
One of the key ways we were able to target families most in need of support was through the IBD Nurse specialists at local hospitals, with whom we have links. The IBD’s nurse specialists were pivotal in helping to identify those patients who would benefit most from this intervention. Our key relationships with IBD health care clinicians are important as they enable us to support health service developments so that people with Crohn’s and Colitis receive better treatment and care.
We were also able to support families’ travel costs in some cases, where there was a need for financial support, and this helped to draw in families to apply, who are more geographically isolated in Scotland, for example from the Highlands and Islands, where travel costs were a constraint.
Marketing through our partners in the area allowed us to reach families that had not previously engaged with our services. Driving advertising through IBD clinics meant being able to reach out to newly diagnosed families and engaging our local networks of volunteers to promote via social media channels allowed us to extend our reach beyond those already engaged.
Without the experience and physical resources of our delivery partners already used to operating in the area would not have been able to deliver this activity to the same standards or have the same outcomes. There were significant issues around sharing information and the contact we might have had with families was lost at the point of registration and only reinstated at point of delivery. This meant we were unable to ask specific questions of those coming prior to attending and lots of information was lost because of this. The lines between our partners ways of operating and ours where at times quite inflexible and future work would require more negotiation prior to planning.
Competing priorities for both us and our partners meant it was quite difficult at times to remain flexible in responding to unexpected challenges. For us this was particularly prominent in the marketing phase of the activity. Some more successful solutions were developed by mobilising our local networks of volunteers in Scotland to support advertising of the camp, to reach local families in need of our support. This was done by sharing the digital content and hard copy materials through the various Scottish Networks.
How Crohn's & Colitis UK has benefitted from the funding
The funding helped us to develop our existing partnership project by holding camp in Scotland for the first time. We do believe it has helped the Charity to raise our profile amongst the families who participated in the project and also, amongst the Scottish IBD Nurse Specialists and clinicians that work directly with the families. We have learned from this experience as it has enabled us to understand and manage some of the challenges of marketing and reaching new people from a new geographic area. It also helped shape how we might approach partnership work in delivering services like this in the future.
At least 85% of children who attend Camp will report trying new fun and challenging activities and display an ability to mix with others outside their carer network or family group.
Children and young people completed a questionnaire at the end of camp to capture their personal feedback and comments about their experiences.: 87% said they have tried new activities, 100% said they make new friends or talked to someone new, 100% said they had fun and felt happy at camp 100% said that being at camp meant that they know they are not the only one living with Crohn’s or Colitis and feel less alone and 93% said they were happy spending time away from their family doing activities. From camp staff and volunteers feedback forms on behalf of the children to whom they were assigned as ‘buddy’ during camp, 62% strongly agreed and 38% agreed with the following statement Camp has given the family the opportunity to enjoy themselves and relax, 85% strongly agreed, 8% agreed that the child felt less alone and that they're not the only one in this situation. 77% strongly agreed and 23% agreed that camp gave the children the opportunity to try something new
Quotations taken from the feedback from the children and young people that attended camp included the following, "enjoyed meeting families and kids the same age with the same condition’ ‘like the fact of not doing activities sometimes’ ‘would like more regular camps’ ‘made new friends’ 'Had a lot of fun’ ‘support workers were awesome’ ‘wish there was more time to get to know everyone’ Parents from one family said: 'In attending camp, we hoped to give our child a confidence boost so that he could share and connect with children affected by Crohn's or Colitis. Our experience was fantastic as our child connected with similar children his age and in the same situation and we have seen our child has grown in confidence & happiness.' Another parent referred to the impact on their two children, I have two! Seeing the youngsters chatting away so quickly, making such close friendships straight away. Secondly is my older daughter who is not the one with Colitis but she does have 22qDS (a clinical and metabolic disorder), which gives her a variety of challenges. With lots of support and encouragement from everyone there, she was able to reach the top of the climbing wall, something she has never even got close to. How she managed and her well-being seemed as important to the team as the kids with IBD.” In the three month post camp evaluation, parents reported the following in feedback survey: “Unfortunately, since her coming home, my child has suffered from a flare up of Ulcerative Colitis. Although she is feeling awful, she has been able to chat it over with the friends she made at camp and just seems so much calmer about it all.” “He seems a lot more confident in himself, knowing that he is not the only child going through these difficulties.” “More confident in making new friends.”
At least 75% of carers will report having experiences outside of their caring role and enjoying new fun experiences in a safe environment with their family.
Parents and carers questionnaire results showed that for the majority, camp was a very positive experience for them in terms of improving their overall sense of well-being and helping to reduce levels of stress. In the pre-camp survey, 23% of parents and carers said they and their family have had the opportunity to relax and enjoy themselves before camp. In the 6 month follow up survey this rose to 100%. 36% strongly agreed and 57% agreed that camp had given them the opportunity to try something new 23% felt low stress before camp and 93% reported feeling less stressed after camp.
Some of the feedback from families demonstrated that camp enabled them to share fun and relaxing experiences as a family and to feel that they are not the 'only ones' living with and affected by their illness. “It was great meeting families with the same situation and sharing experiences with people who understand and know what Crohn and Colitis is". " Made new friends and exchanged numbers with some parents.” “A couple of days to let go of responsibilities and everyday worries. A chance for my daughter (with IBD) to interact with other children who are in the same boat as her.” “As we don’t know of any other families that have children with Crohn’s, it was nice to meet and talk to other parents, knowing that you are not the only family going through this.” "Meeting other parents in the same situation who are able to relate to my daughter’s Crohns and experience with it.”
Carers and parents will leave camp more aware of support mechanisms and resources available to them to sustain their ability to continue caring for their child.
Prior to camp 47% said they were aware of where they can access information and support for their child’s condition, when they need it. In the most camp survey, 100% strongly agreed or agreed with the statement. Prior to camp 61% said they felt confident in coping with managing their child’s condition day to day. In the post camp evaluation, 79% strongly agreed or agreed that they felt this way. After camp 64% strongly agreed and 21% agreed that they had made a connection with another family or parent which has helped them to feel more supported. In the 3 month post camp evaluation 50% attended a family day run by Crohn’s & Colitis UK and 50% had accessed the charity’s patient information resources online.
One family commented on their feedback about their experience of camp with regards to their anticipated hopes of the camp experience, prior to attending camp: 'We were looking to speak to other parents, spend time as a family, give a better understanding of the conditions and how to manage it day to day. As a family we enjoyed meeting families with the same condition and appreciated what the programme helped us to do both together and apart. We would love more regular opportunities like this...We found support from other parents as well as information that left us more knowledgeable about different support & services on offer.'
At least 80% of parent / carer participants report feeling more confident, less isolated and having increased levels of self-esteem.
Only 7% of parents or carers said they knew of other families affected by Crohn’s and Colitis to help and support them. This rose to 100% after camp. 100% agreed that camp made them feel less alone and that they were not the only ones in this situation. In the post camp evaluations the volunteer buddies reported the following from their survey: 77% strongly agreed and 23% agreed that their family made a connection with another parent/carer/family during the camp weekend, which has helped them feel more supported. 38% strongly agreed and 46% agreed that the family seemed less stressed. 62% of volunteer buddies reported that the family appeared more confident in coping with managing their child’s condition.