Summary
Scotland Siblings and Young Carers Camp is for children and young people aged 8-17, who are the siblings of children living with serious illness. Our unique Therapeutic Recreation camp ran virtually over summer & provides campers with long term benefits and short term respite from their caring roles
What Scotland Siblings and Young Carers Camp 2021 did
We delivered two Camp in the Cloud “siblings” sessions which took place on 12th-16th April and 26th – 30th Jul on our virtual platform.
40 Siblings and young carers of children with serious health challenges in Scotland accessed our event remotely and each of our campers received a Seriously Fun box containing all the activity materials they needed to take part – including hot chocolate for video “Cabin Chats”.
Campers took part in 3 full days of activities. Every morning the group logged in to take part in a joint activity in one of 3 age-relevant teams. Watercolours, STEM activities, Building a Ferris Wheel and Rocket! The afternoon consisted of 'free-flow' activities, which could be completed independently. In the evening the groups gathered together for cabin chat, an opportunity to share their creations, talk about the day and get to know their other campers.
Campers we referred to our services through being previous attendee of our residential camps, or via a sibling being referred to camp by their healthcare professional. This year we upgraded our technology to improve the quality of our video and audio resources and ensuring improved accessibility to our platform. We were able to develop more volunteering opportunities, and train volunteers to facilitate the live cabin chats.
This was the first year of formalising Camp in the Cloud as an additional service to the work of Over The Wall and despite the risks posed by the pandemic we were able to implement our learnings from the pilot to create a service which has supported isolated young carers. We continue to take feedback from young carers to ensure that the development of the service will meet their perceived and hidden needs moving forward.
What Over The Wall has learned
We have developed multiple new short breaks activities and we have developed ways to deliver these activities virtually to a high level of audio and visual quality.
We also learned that we needed to increase the number of campers in a group as not everyone attends every live call and so to make sure it was a good experience for all the campers we increased the team sizes to ensure they had enough interaction with children their own age.
This year specifically we learned to include sub-titles on all our videos for those with hearing impairment.
How Over The Wall has benefitted from the funding
Organisationally Creative Breaks funding has enabled us to take a pilot project, pulled together in the early stages of the COVID-19 Pandemic and create an impactful long-term service to reach vulnerable young carers. We have been able to improve our service to young people, including streamlining our administrative functions and introducing a new CRM system to enable us to better care for campers virtually, as well as monitor and evaluate outcomes. We are now in a position that we are able to reach young carers who would otherwise not have been reached since the pandemic.
Project Outcomes
Outcome
60 young carers will have access and support to try and enjoy a wide range of new activities not usually available to them
Results
40 campers took part in the Siblings and Young Carers Camp 2021. Feedback from our campers showed that the Siblings & Young Carers Camp 2020 was successful in improving young carers’ wellbeing in Scotland. Quantitative data collected in our post camp questionnaire showed that , 94% said “I feel more confident”, 92% said “I am more positive about the future” and 90% said “I feel less worried” following their Camp in the Cloud sessions.
We also collected qualitative data asking parents to describe differences seen in their child following the project which included observing that their children were “Less anxious” and “Happy, motivated and engaged.”
Case study
When Charlotte’s brother Alex was just two years old, he was initially diagnosed with Cerebral Palsy and then re-diagnosed at age six with a rare genetic condition, known as Hereditary Spastic Paraplegia, (HSP). HSP affects Alex’s gross and fine motor skills impacting his mobility due to a weakness and tightness (spasticity) in his legs.
As a result, movement has become increasingly difficult for Alex, and now at the age of 15, he requires a wheelchair, having recently undergone scoliosis surgery. To help her parents with the added pressures of caring for Alex, Charlotte has always been more than willing to do whatever she can to help.
Charlotte, now 13, explains, “I try my hardest to support my parents with Alex. I also really enjoy caring for him. At the moment, he can’t stand up, which sometimes frustrates him. I remember when he was at school, his friends would play football, and he would watch at the side lines, which I think he found hard. He is very positive though- he knows his life is difficult, but he doesn’t let that get in the way.”
“I love making him laugh and smile. But ever since I was born, my mum and dad have always wanted to make sure that I also had time for myself. They always wanted me to get outside and do other things too. Which is why Over The Wall camps have been so great.”
“I don’t know how Over The Wall did it, but even though I wasn’t at camp, I could still see everyone on the screen- and with the activities, challenges and everything, it felt just like camp was still happening.” said Charlotte. “It was so nice to see familiar faces and friends, and to look at the things everyone had made during the challenges. The activities were so fun, I really enjoyed trying new things, and sharing them online with everyone.”
Outcome
60 young carers will have enjoyed a fun break from their caring responsibilities at a camp designed to deliver short-term respite and long-term benefits, such as; increased confidences & self-esteem, new coping mechanisms and a better understanding of the need and means to self-care
Results
40 campers took part in the Siblings and Young Carers Camp 2021. Feedback from our campers showed that the Siblings & Young Carers Camp 2020 successfully gave young carers the opportunity to enjoy life outside of their caring role. Quantitative data collected in our post camp questionnaire showed that 88% said “I am more able to overcome personal challenges”, 88% said “I feel refreshed”, 90% said “I feel less worried” following their Camp in the Cloud sessions.
We also asked parents to comment on the impact of camp, they said, "[Child A] was very shy to log into the zooms, but she loved to complete the tasks and we did the murder mystery together. That gave us mum and daughter time we don’t often get chance with [Child A’s] brother needing constant attention. Camp encouraged [Child A] to talk to her friends about being a young carer. She also let me finally contact the school about her home situation which they were unaware of before. Thank you for helping us connect as a family
Case study
Haris’ brother, Hussain was born with severe autism, he has epilepsy and is non-verbal. As someone who also has extreme behavioural issues, Hussain, (now 19-years-old), requires constant care and supervision, which naturally means that Haris has more responsibilities than the average ten-year-old.
“Haris plays a huge role in Hussain’s care- and in our family.” said Haris’ dad, Sarfraz. “This unfortunately means he that has had to mature sooner than most children. He is often Hussain’s eyes and ears, supervising him to ensure he doesn’t hurt himself."
“Whilst we do our best to try and not expose Haris to too much, we cannot take away what is happening in our house. We always make sure he is loved and well looked after, but we also often need his help. We know that seeing your brother with his eyes rolled back, trembling, and foaming at the mouth can be quite traumatic for a ten-year-old. Especially when this can happen again at any given time.”
“Hussain’s behaviour can be challenging at times, but he doesn’t understand the consequence of these behaviours- such as being destructive, and this can be difficult for Haris. For example, the school gave Haris a touchscreen laptop, that Hussain ended up throwing and breaking. He doesn’t understand these actions of course, but it’s still very hard for Haris. The unpredictability of Hussain’s behaviour means that having phones, or nice furniture, or simply enjoying meals, or days out, can be very difficult, or sometimes impossible, so, quite often Haris sadly misses out.”
Life during lockdown
As someone who is clinically vulnerable, Hussain and his family were advised to shield and remain isolated throughout the lockdown. “The last two years have been a nightmare.” Said Sarfraz. “Unfortunately, after lockdown ended, my wife and I tested positive for Coronavirus, and we were bed ridden. Haris was incredibly scared for our health at this time, as he naturally associated Covid with death. Then my eldest son tested positive too, and so we supervised Haris as best we could from behind a glass door.
“Haris took on a huge amount of responsibility during this time. He was playing a vital role in Hussain’s care, and for those days, we really needed him.”
Finding Camp in the Cloud
When the family discovered that Camp in the Cloud existed as a virtual online camp platform that could be accessed for siblings, from home- it seemed perfect. “We are always very grateful for any external support.” Said Sarfraz, “So, this was ideal for Haris. It offered him the escape he really needed, and he really enjoyed every moment of it. He did all the activities with his mum and enjoyed all of the games online. I did one activity with him too, and he loved that.”
“Camp in the Cloud definitely helped with Haris’ general wellbeing. You can’t just pretend the traumatic times haven’t happened. Every now and then, you do need to stop for a moment and take a deep breath- I think Camp in the Cloud did exactly that for him.”
“Also, I believe that one of the most important things we can give Haris is our time, which is often difficult. We were able to do our best to put some aside with Camp in the Cloud, to do an activity and get involved with him.”
“Sometimes playing games becomes an impossible task, so we struggle to do it as a family. It was good for Haris to have something, just for him, that allowed him to go and find the time to do just that.”
“Camp in the Cloud provided an escape, one that was full of positivity. I was working from home during the camp and could hear Haris giggling! It was lovely to hear. During camp, whenever I saw him, he was smiling. Whatever activities were going on made him really happy- he was excited and was always looking forward to what he was going to be doing the next day.
“Camp in the Cloud had a huge positive impact on Haris, one that he really needed.”
Outcome
60 young carers will feel happier and more able to cope with the challenges of everyday life, which will positively impact their sick siblings and parents/ carers.
Results
Feedback from our campers showed that Siblings and Young Carers Camp 2021 provided support to young carers to cope with the challenges of everyday life. Quantitative data collected in our post camp questionnaire showed that 89% said “I feel less isolated and alone”, 90% said “I am better able to overcome personal challenges”, 95% said They feel happier after camp.
We also asked parents to comment on the impact of camp, which included, "CITC was amazing. Thank you so much for providing my son (who unfortunately can get overlooked due to his brothers needs) a fun engaging week.)
Case study
For Charlotte, being able to come to camp and meeting others going through the same challenges reminds her she's not alone, helps her feel understood, and relieved from her caring role over these few days.
“Camp in the Cloud was something nice to get away to. I met new people and we even shared numbers later. I had met one friend at residential camp and luckily, Camp in the Cloud allowed us to get back in contact.”
“It’s great meeting others with siblings who have health challenges. You sort of know they are going through the same things as you, and they understand everything. Sometimes when I talk to friends, they don’t really get it. If I’m away from school and they ask, ‘where have you been?’ and I say in hospital with Alex- it’s hard for them to understand.”
“My friends from sibling camp know that we are all going through the same things, even though we might not to discuss the details- as we don’t have to. You know that whatever they are going through you could probably help them- it’s just nice knowing that someone else in the world is going through similar things, and that you can speak to them if you needed to.”