Helping with a diagnosis in the family
What and when to tell the children is a huge dilemma faced by parents who have been diagnosed with cancer. An estimated 15 per cent of people with cancer in Ireland are aged between 20 and 50 years old and many of them would have at least one child aged under 18.
A six-week programme called CLIMB - Children’s Lives Include Moments of Bravery – is designed to help those aged five to 12 to deal with a cancer diagnosis in the family. Developed in the US, it is now run in 35 cancer centres and hospitals around Ireland.
The almost nationwide availability of Climb is the legacy of Dublin mother Clare Clarke, who died of cancer at the age of 35 in 2015. When shelookedfor advice on how to tell her two daughters about her illness, she found that while Cancer Focus Northern had a well-established Climb programme, a cancer centre in Tuam, Co Galway was the only place in the Republic that had somebody trained to offer it.
Determined to make Climb much more accessible in the South, she and her colleagues at the Ladies Gaelic Football Association (LGFA) embarked on the Climb4Clare fund-raising campaign. Clare died on January 30th, 2015 – the day the first training course in the Republic for Climb facilitators started.
“We promised Clare we would drive behind it and, if we are being perfectly honest, we never expected it to get so big,” says Lyn Savage, development officer with the LGFA and a close friend of Clare.
They have been phenomenally successful in funding and organising the training but they are also keen to raise awareness among families affected by cancer, so they might look for a programme near them.
It has also started “Writing for the Future” training – a scheme where volunteers sit with people close to death to compile a book with them of their thoughts and feelings for their children.
“They pick their favourite photos – then it is printed in a hardback book and given to the family. Some will give it to their families before they pass away but most will ask to hold it until post-bereavement and give it to the kids,” says Lyn who did this with Clare for her two daughters, who were 13 and six when their mother died.
Climb4Clare has got to the stage where the LGFA now wants to it to be adopted as part of the national cancer strategy, to ensure it is sustainable.
“As a sporting body, we have the passion but not the expertise to keep it going,” says Lyn, who does all her Climb4Clare work in her spare time, in a voluntary capacity. Very conscious that it could be asked “who the hell are ladies football to say there is this gap in cancer services?”, the LGFA commissioned the first evaluation study of Climb in the Republic.
“Children of Parents with Cancer: An evaluation of a psychosocial intervention”, led by Dr Carla O’Neill of DCU’s School of Nursing and Human Sciences, found that participation in Climb seemed to be a positive step for all of the children surveyed in what was a small, pilot study.
“It gave them a chance to express their worries and meeting other children in a similar situation appeared to have a somewhat calming effect as they bonded as a community,” the study notes. It was also a psychological support for parents, as they felt that the programme removed some of the burden of responsibility of talking about the diagnosis to the children.
Through the use of arts and crafts to facilitate discussions, children were better able to express their emotions and communicate more openly with their parents afterwards.
“The important change,” adds the study, “was that the children now had words to articulate what was happening at home and they were now part of the illness conversation.”
We promised Clare we would drive behind it and, if we are being perfectly honest, we never expected it to get so big