Parent Survey Reveals Emotional Impact of Childhood Cancer #BeAChildCancerFriend Campaign

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Children's Cancer and Leukaemia Group (CCLG) has revealed the results of an online survey to uncover the wider impact of cancer on families as part of a major campaign to improve care and support for parents and carers.

The online survey, which was completed by parents and carers of children diagnosed with cancer^[1], found that 96 per cent of respondents felt lonely or isolated following their child's diagnosis, while 79 per cent said they felt left out of normal life.

Issues raised by the survey include how cancer has affected families' ways of life and the difficulty of coping with stress and anxiety. Nearly all parents felt overwhelmed and a sense of grief at the loss of "normal" family life.

The survey highlighted the lack of awareness shown by others on knowing the right and wrong things to say to families affected by a cancer diagnosis. Nearly half of all respondents rated the statement "Don't worry, it will all be fine" as the worst thing to say. Negative comments included "I wish my child would spend the day in bed", "childhood cancer isn't proper cancer" and "my pet has just had cancer so I know how you feel".

When asked how friends and family members could help, 93 per cent of respondents suggested keeping in regular contact, while 91 per cent wanted to talk about normal "non-cancer" topics and 84 per cent wanted a friendly hug. Parents expressed hurt and surprise at how some friends avoided and ignored them.

Respondents revealed the right things to say, which included "I'm always here for you", "how are you?" and "do you fancy a coffee?" Over 70 per cent of respondents said that having a family meal cooked for them or bringing food to the hospital was the most helpful thing someone could do for them, while offering to look after their child if they needed to go out was also rated highly.

Over half the respondents (51 per cent) said they were given no information or help on how to cope with emotional distress and shock at diagnosis with one respondent stating: "There is very little support for parents outside of the medical side of diagnosis and the psychological effects are really difficult to manage."

As part of the Childhood Cancer Awareness Month campaign, CCLG will launch a Childhood Cancer Emotional Health and Wellbeing Research Fund as well as the #BeAChildCancerFriend social media campaign including a short animation aimed at helping others understand how they can practically help and what to say to avoid difficult social situations. An online information hub and parents' Facebook group will also be launched during September to help parents and carers access the support they need.

Ashley Gamble, Chief Executive of CCLG, said: "Listening to the strong feelings expressed by parents and carers in this survey and the emotional struggles they face has given us a clear picture of the significant impact that childhood cancer has on personal and family life. While emphasis has always been on improving treatments and finding a cure, these results highlight how we need to make sure that parents and carers have access to a full package of emotional and psychological care and support throughout the cancer journey.

"It also shows how friends and family can play a key part in helping families to cope better with this devastating diagnosis and our #BeAChildCancerFriend campaign aims to raise awareness on how help can be given. These invaluable insights will help us to influence positive change through our national expert networks and boost research into this important area through the launch of our new Research Fund."

Childhood Cancer Awareness Month takes place every September to highlight the effects of cancer with supporters being encouraged to wear a gold ribbon throughout the month in order to help raise awareness.

There are around 1,800 new cancer cases in children in the UK every year, around five every day, with leukaemia being the most commonly diagnosed cancer in children^[2]. CCLG and its members are the experts in the treatment and care of children with cancer in the UK and Ireland. The charity funds and supports innovative and world-class research into childhood cancer and coordinates the UK's national biobank of donated tumour and tissue samples.

To find out how you can get involved in Childhood Cancer Awareness Month, visit: https://www.cclg.org.uk/childhoodcancerawarenessmonth

About Children's Cancer and Leukaemia Group (CCLG) and childhood cancer 

• Children's Cancer and Leukaemia Group is a leading national children's cancer charity and expert voice for all childhood cancers. Its network of dedicated professional members work together in treatment, care and research to help shape a future where all children with cancer survive and live happy, healthy and independent lives.
• Each week in the UK and Ireland, more than 30 children are diagnosed with cancer. Two out of ten children will not survive their disease.
• Over the last 40 years, CCLG has played a key role in the major improvements in survival rates and the national standards of care for children.
• There are still some childhood cancers with a poor outlook, and many treatments can have long-lasting side effects. Further research is therefore vital, and the ultimate aim of CCLG is to cure as many children as possible while reducing the short and long-term side effects of treatment.
• We fund and support research into childhood cancers.
• We help young patients and their families with our expert, high quality and award-winning information resources.
• CCLG receives no permanent funding and is reliant on our valued supporters.

CCLG spends only 6p in every £1 on fundraising activities.

1. The CCLG online survey was completed by 226 people, who are the parents or carers of children diagnosed with cancer between birth and the age of 24.

2. https://www.cancerresearchuk.org/health-professional/cancer-statistics/childrens-cancers