Our 2018 ‘Hidden Lives’ survey completed by 52 members in our family community revealed that 84% of families caring for a seriously ill child have felt isolated since their child’s diagnosis. 80% said that they were less likely to go out socially and 90% said their relationships with friends and family had been affected.
There are many reasons why families caring for a seriously ill child face a higher risk of loneliness. Physical accessibility to social spaces; juggling multiple medical appointments; dealing with the unpredictable nature of their child’s condition; and sheer physical and emotional exhaustion can all create barriers to social inclusion and community engagement. As one parent described: “My friends have stopped inviting me to social events because I nearly always have to cancel at the last moment due to my child’s illness or my exhaustion.”
In December 2018 we launched ‘Building Connections’, an 18 month project funded through Her Majesty’s Government for Digital, Culture, Media and Sport and National Lottery Building Connections Fund to address this.
Through Building Connections we wanted to improve the 1-1 support we can offer to families and help to build connections between families, and with local services, to help break the cycle of loneliness that families experience.
So how did we get on?
Knowing where to go for information and support is key and unfortunately, many families who are caring for a seriously ill child report they feel lonely as they just don’t know where to turn. Our helpline is there for parents and carers when they are finding it hard to cope. Throughout 2019 we’ve been able to support 50% more families than in 2018. Our helpline connects families to other carers or with services in their area for extra support and guidance.
One bereaved parent said of the helpline: “Your helpline has been there for me when no one else was, you let me speak completely openly about his death for the first time and I feel less alone. Thank you.”
Meeting and connecting families has been vital to this project and we have been delighted to have been able to attend events and meet families with seriously ill children throughout the course of the year, up and down the country. During these events we have been able to share our important resources, talk to them about services available in their area and let them know about our family offer and how Together for Short Lives can help them if and when they need it.
Being together online
Our Family Facebook Group is one of the main mechanisms through which we are able to connect families with one another and provide a community of peer support. The group has grown steadily throughout the year, and provides a safe, private space where families can share their thoughts and feelings with others facing similar experiences and reach out at any time of day or night – whenever they are feeling most alone. Three members of the group volunteer to moderate and respond to posts and this model has worked really well.
Our website continues to provide as an information hub reassuring families they are not alone, and our public social media channels (with a large online community) brings families together through the sharing of family stories and discussion.
Lizzie Chambers, Director of Programmes“We are very proud of all that was achieved in 2019 through our ‘Building Connections’ project, supporting more families than ever before. We know how isolating life can be, caring for a seriously ill child, 24 hours a day, 7 days a week. Through this project we have made it possible for families to come together to ease the loneliness and solitude that can accompany caring – whether that is online, in person or via the telephone.”