The Need
COMMON CHALLENGES
There are several similarities between the groups with which we work, and they benefit from a sense of affiliation and shared understanding when they are brought together.
YOUNG TRANSITIONING PATIENTS
A research briefing prepared for Together for Short Lives found that young adults who are forced to make the transition from paediatric to adult health care often do not feel psychologically ready for it. This transition forces them to take on greater responsibility, notably in terms of managing their health and taking the lead in consultations with health professionals, which can generate strong feelings of anxiety during this period. We have also noticed that transitioning patients typically suffer from high level of isolation.
Eimear Dempsey, a Clinical Nurse Specialist and Recipient Transplant Co-ordinator at Great Ormond Street Hospital told us how
“transition to adult hospital from paediatrics is a notoriously difficult time for the whole family, and instilling confidence in the young person and family is key. Having the knowledge of a reduced life expectancy can affect the young person’s ability to take responsibility for their own health, and to make informed choices regarding their emotional and social development ... there is a huge amount to be gained for these kids. They just need a little bit of guidance and support and to know that they are not alone”.
This guidance and support is not routinely available – indeed we understand Renaissance Foundation to be the only charity to focus specifically on this area - which is why our work in this area is so important.
Eimear also noted that
“meeting other transitioning patients during their time at the Foundation provides young patients with an environment to share their experiences and fears, thus alleviating stress and anxiety”.
This point has been emphasised by another supporter of the charity, Dr Rachael Jones, Consultant Physician at Great Ormond Street Hospital, who has underlined that:
“Many of our young people are not in education, employment or training and face great difficulty with regard to their future [...] There is a great value in peer support for young people and in this vein I believe the Renaissance Foundation is truly inspirational.”
YOUNG CARERS
An alarming number of young people act as the main carer to a relative or close family member. The most recent official census revealed that in England alone, there are approximately 166,000 carers aged between 5 and 17.
The responsibilities placed on young carers have a detrimental impact on their ability to perform well at school and to prioritise their own mental and physical health in order to prepare for adult life. The Department of Education produced a qualitative report in February 2016 on the lives of young carers in England, and found that caring can have adverse effects, including anxiety, stress, tiredness, strained family relationships, restricted social activities and relationships, and under-engagement in education. Research has found that young carers are 1.5x more likely than their peers to have a special educational need or a disability, and without early intervention they are more likely to develop mental health issues when they are older. A report by the Children’s Society also found that one in twelve young carers in England spends more than 15 hours a week caring for a parent or sibling. Young carers commonly do not have the opportunity to interact socially because of their responsibilities at home, and therefore lack the confidence to express themselves and to participate in everyday situations.
Carers are often hidden from the public eye, unwilling to come forward to ask for help and therefore unable to access support networks. The work undertaken by Renaissance Foundation thus serves as a lifeline to young carers. The charity offers them the chance to take some time away from their responsibilities at home, to boost their confidence and to prioritise their own needs.
Research has revealed that formal and informal support can help to reduce the extent of young carers’ emotional burden. In particular, young carers’ projects, wherein young carers meet other carers who share the same difficulties, are an important source of support and respite for them. The charity provides such a source of formal support, as young carers can meet not only fellow young carers but also young people from different backgrounds, thus expanding their social circle.