Discovering your child has a potentially life threatening heart condition is one of the hardest things any parent can hear. Many families find it difficult to cope and welcome additional support beyond the expertise of medical staff. This is where ECHO comes in.
As the only charity working closely with families whose child is being treated for a cardiac condition by Evelina London, it is crucial that we provide the highest quality support we possibly can. This means addressing the unique and very personal support needs of heart children and their families. The support groups we currently offer are attended overwhelmingly by mums and other female relatives. While on the whole this shows we are meeting the needs of some family members, it also means that we need to do a lot more for dads and other male relatives.
A recent survey of 500 dads by Netbuddy and Scope put into sharp perspective the extent to which caring for a sick child affects the already precarious balancing act of family life. We want to address this imbalance and to do this we must find out how we can help each and every family member. The survey found that the main challenges dads face relate to employment and income. We are told that it is often the mother who stays in hospital with a child, fathers often feel responsible for having to cover their partner’s loss of income. On the other hand many have to take a considerable amount of time off work to look after siblings at home or the hospital.
We understand the strain that supporting a child with heart disease can have on dads’ mental health. So we started the conversation with dads through focus groups and individually. They told us about what life is like in their shoes and how they feel they can best be supported. We believe that this walking group for men will help in a number of ways: it will help to relieve stress, tackle depression, give them a chance to exercise, connect with the wider heart community, and the opportunity to talk in a relaxed setting.
The Walking In Our Shoes project is launching in June 2018. The event will involve the premiere of our new film: Walking in our Shoes and will give everyone a chance to hear from heart dads about their experiences. Thereafter, the first ever group walk away is organised to take place along London’s South Bank and will give dads the opportunity to talk and get to know each other. The group is not exclusively for dads as we realise this would exclude some really important members of each individual family’s support networks. Grandads, uncles, other male relatives and members of medical support teams are also welcome.
Looking to the future, we hope this will be the first of many walks in London as well as further afield in places such as Eastbourne, Bexley and Brighton. All group walks will be advertised on the ECHO website and dads and male relatives caring for a heart child are encouraged to join online to take part in or volunteer to organise walks in their local communities.
The walking group is designed to meet the support needs of the male relatives of heart children, as we recognise that because parents play different roles in their child’s life, their support needs will be different. We hope this initiative will address the support needs of dads and other male relatives of heart children and in doing so, significantly widen the impact of our support on the heart community.