Hidden costs of childhood cancer: More than half of parents experienced depression during child’s treatment

Childhood cancer is taking a toll on the mental health of parents, with many identifying depression, anxiety and even panic attacks, as a consequence, new statistics from CLIC Sargent reveal.

Hidden costs of childhood cancer: More than half of parents experienced depression during child’s treatment
  • Parents of children with cancer struggling with the impact on their own mental health
  • More than half of parents (63%) said they experienced depression during their child’s treatment 
  • More than a third experienced panic attacks 
  • 84% of parents experienced loneliness  

Data collected by cancer support charity CLIC Sargent sheds light on the hidden emotional and mental health costs of cancer for parents both during and after their child’s treatment.  

The research found that more than half of parents (63%) said they experienced depression during their child’s treatment, more than a third (37%) experienced panic attacks, 84% experienced loneliness. Worryingly, less than 40% of parents accessed support for managing stress and anxiety during their child’s treatment [1].

Parents described the strain of having to remain composed and strong for their child, the stress of trying to maintain a family life, anxiety around outcomes and recurrence, and ongoing trauma following treatment.  

Debbie Moran, 43, a nursery owner from Birmingham, was absolutely devastated when her daughter Abigail was diagnosed with acute lymphoblastic leukaemia (ALL) at just three-years-old. 

Debbie said: “Everyone tells you to look after yourself and if you get poorly then it’s no good for the children, but that’s easier said than done.

"You just become lost and in the end I got poorly and the doctor suspected that I had a mini stroke and I ended up in hospital.

“I’m still taking anti-depressants, which I am not ready to come off at the moment. I don’t know what the future holds. I don’t know whether I will be able to treat Abigail as a normal girl, or whether I will be constantly living with the fear." 

The parents the charity surveyed also shared the following:
  • 95% of parents experienced anxiety  
  • 69% of parents said their child’s cancer had a serious impact on their own health and wellbeing 
  • 78% of parents said managing their finances during their child’s treatment caused additional stress and anxiety 

CLIC Sargent, the UK’s leading cancer charity for children and young people, has released the statistics as part of September's Childhood Cancer Awareness Month to raise awareness of the all too often hidden emotional and mental health costs of cancer.

The charity is encouraging parents to start talking to help break the stigma of accessing support and is calling on the public to sign up as campaigners to join their fight for young lives against cancer.

Kate Lee, Chief Executive of CLIC Sargent, said: "Parents have shared painfully honest accounts with us highlighting the hidden costs of cancer – whether it’s the panic they feel every time their child has a high temperature, the emotional strain of staying strong for your family or fearing relapse at any time.  

"To be told your child has cancer is devastating news but these findings show just how stark the reality can be for parents. It is vitally important that these families can talk about what they are going through and get the support they need. At CLIC Sargent, we know cancer’s impact stretches far beyond the shock of diagnosis and can last long after treatment finishes, this is why we strive to support the whole family, not just the person with cancer.”

Debbie's story

Debbie Moran was absolutely devastated when her daughter Abigail was diagnosed with acute lymphoblastic leukaemia (ALL) when she was three years old. 

Alongside the trauma of the diagnosis, and watching her daughter go through gruelling treatment, Debbie started to feel the impact on her own mental health. 

She said: "When the doctor told us it was leukaemia, I just remember saying 'no,no that must be wrong'. My husband broke down in tears and Abbey kept saying 'what's wrong daddy?'. Life was whirlwind after that." 

Cancer treatment can be intimidating and uncomfortable for an adult, let alone a small child, and Debbie found it very hard to see Abigail go through it. 

"She was so frightened because of all the needles and the fear as doctors and nurses came to see her.

"As a mum I felt helpless, I didn’t want them to hurt her, but I also knew that what they were doing was to save her.  

"Trying to keep my emotions in check so as not to frighten her was one of the hardest things I have ever done." 

Throughout the treatment, the family was supported by their CLIC Sargent social worker, Sam, who helped them with practical and financial advice. 

At the beginning of last year, as Abigail was moving onto maintenance therapy, everything started to get on top of Debbie, who suffered a lot with anxiety and depression and really struggled to get help. 

After being given medication by her GP, Sam helped her access therapy at the hospital.  

"There was a massive waiting list and I'd been on it a while, around six to seven months, but he spoke to them about how I was feeling and I got my first appointment soon afterwards. All in all, it took nearly a year to get that help." 

Debbie believes more awareness is needed of the mental impact of cancer on parents and the whole family, with stress and anxiety set to continue beyond the end of treatment. 

She said:

"Now as a family we're all trying to move forward and it's getting better. It's as normal; as it can be – it's our new normal. 

"We will always be alert, worried that the cancer will come back. It's made us realise what's important in life, and what's not, and we can deal with anything as a family." 

For more information visit our Childhood Cancer Awareness Month page.

[1] As part of our research into the mental health impact of cancer, we developed an online questionnaire which was completed by a total of 279 parents/carers of children with cancer. The questionnaire was promoted through CLIC Sargent’s networks, care professionals and social media. Percentages reported are drawn from the number of people who answered each question, not the total sample size. The majority of respondents (90%) were mothers and most of those who responded (81%) were based in England. Over half of those who completed the questionnaire (58%) were parents/carers of children who had finished treatment. In addition to the quantitative research, 5 semi-structured interviews were conducted with parents/carers. The research took place in 2016.

For more information about CLIC Sargent, an interview or images, please contact Jack Wilson on 020 8752 2833 or jack.wilson@clicsargent.org.uk. Out of hours contact 08448 481189. 

About cancer in children and young people 

Today, 11 more children and young people in the UK will hear the devastating news that they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK. 

About CLIC Sargent 

When cancer strikes young lives CLIC Sargent helps families limit the damage cancer causes beyond their health. CLIC Sargent is the UK’s leading charity for young cancer patients and their families. We provide specialist support, to help and guide each young cancer patient and their family. We will fight tirelessly for them, individually, locally and nationally. For more information, visit www.clicsargent.org.uk.  

Note to sub editors 

Please note that the name ‘CLIC Sargent’ should not be abbreviated to CLIC, and that the word ‘CLIC’ should always appear in capitals, as above.