Monday 21st December 2015
Mac Voice, the magazine for Macmillan professionals: Winter 2015
The fourth part of our Sharing Good Practice issue on psychological support: Claire Delduca on helping parents with cancer support their children.
For many parents – plus carers, guardians, grandparents and other family members – one of the values they hold most strongly is the desire to keep their children safe from any harm, threat or distress.
Consider then what happens when an adult is faced not only with their own cancer diagnosis, but the thought about how they are going to continue to love and protect their children in the same way. Many parents are faced with difficult questions such as ‘How will I find the right words to tell them?’, ‘Who will look after them if I’m in hospital?’ and ‘What will happen to them if I die?’.
They may be less physically able to play with, support and care for their children in the way they wish. They may find themselves in a ‘cared for’ role rather than caring for their children as usual. This can be especially difficult in single parent families and families that have a very small support network nearby.
All this is added together with the inevitable disruption to the family’s usual routine caused by hospital appointments, treatment and admissions. Parents often describe feeling overwhelmed and at a loss to know what to do.
Children need to know that they will be loved, safe and cared for in order to maintain psychological resilience. Parental distress is likely to have an important impact on the parent’s confidence and ability to support their children and therefore also their children’s well-being. In general, children who have a parent with cancer are more likely to report higher levels of anxiety compared to the general population, with 6–12 year olds being more likely to experience greater internalisation and somatic symptoms.
Parental anxiety has been found to account for the greatest variance in child adjustment. Parents commonly worry that telling their children about the cancer would be too upsetting and try to protect them from distress by not telling them. However, this can unintentionally lead to their child feeling vulnerable and unable to talk openly with their family about their worries and fears.
Only 50% of children are likely to be informed of parental cancer after diagnosis, with 19% still not knowing after their parent has undergone surgery or radiotherapy.
In contrast, most children are likely to report that knowing about their parent’s diagnosis is helpful. Only 6% of 6–12 year olds and 11% of 13–20 year olds report that not talking or thinking about the parent’s illness helped.
These findings are particularly important given that parents often underestimate the impact of their illness on their children. Children’s anxiety levels are specifically related to lack of knowledge about the illness. This highlights the importance of communication between parents and their children about the cancer and the need to support parents in doing this.
Common reactions to cancer in the family
Although younger children may have little understanding of illness, they are more aware of separation and disruption of routines. They may believe wishes can come true and a kiss will make everything better again. They may even believe that they made their parent ill by being naughty.
Some children may be afraid to show that they are frightened or lonely; they don’t want to cry, or they want to be brave so they don’t upset their parent.
Young children may complain of frequent stomach aches, avoid being away from their parent or behave differently at home or school. Older children can sometimes use friends more than family for support and comfort. This can sometimes appear as though they are indifferent. However, they may be at a stage in their lives where they are naturally moving towards their friendship groups and their own independence. They may appear resentful and angry if their time spent in out-of-school activities or with friends is compromised due to changes in family routines. Some teenagers may take any extra responsibility in their stride, while some may appear to grow up too quickly.
For some, conflict may occur if their newfound responsibilities are taken away if their parent starts to feel better. Parents may feel guilty and try to minimise the impact of the cancer on their family by not telling their children about it. Or perhaps by making promises they may not be able to keep, such as ‘I promise I will get better’.
However, they are often then faced with the dilemma of keeping secrets and the worry that their children could instead find out about the cancer from others, for example in the playground. Parents are often also keenly aware of how easily their children notice changes in the family, and how their children may come to the wrong conclusion about what is going on. With the parent already feeling overwhelmed, they may then find themselves feeling more impatient and irritable with their children as they struggle to cope with day-to-day life. Alternatively, they may try to compensate for the impact of the cancer by loosening their usual boundaries, saying ‘no’ less often or treating their children more, to try to alleviate their children’s and their own distress.
Honesty and openness
Thinking about talking to children about cancer can understandably feel frightening. Parents may ask professionals to do it for them. However, supporting parents on an emotional and practical level to have these conversations can help children feel safer, as they are told by someone they know, love and trust, rather than a stranger.
Letting parents know that they cannot protect their children from feeling sad, but that most children are able to cope with the information, can help them to begin to explore the longer-term outcomes of talking to their children about cancer. For example, this can help their children feel more supported and develop their resilience to difficult life events.
Being honest and including their children in what’s happening can give their children chances to ask questions and talk about their worries – helping them to feel less anxious and more supported. Using the word cancer and simple explanations can also help their children’s understanding of what to expect and clear any misunderstandings that it isn’t their fault and they cannot ‘catch it’ like a cold. For example: ’Daddy has a lump in his tummy and it’s called cancer. The doctors and nurses are going to give some special cancer medicine to try to make daddy better.’
Explaining the treatment, side effects and planning for hospital visits can also help children to feel more prepared for changes and separation – to know that they are still loved even when their parent isn’t with them. There is no ‘right’ time to tell children about cancer. Supporting parents to use creative resources such as books, toys and play exercises can help them find the words and help the family to explore their feelings about the cancer together. This can help make the painful conversations a little more manageable. Most importantly, it is alright to keep to usual routines and boundaries. Reminding parents that praise and having fun as a family are just as important now as ever can help the focus to be about the family, rather than the cancer.
Some parents may be facing the end of their lives and the prospect of leaving their children. Continuing to have open conversations about the cancer can help to prepare their children for this. When children and young people’s support needs associated with bereavement and the accompanying changes are not identified, it can increase their risk of poor outcomes. For example, outcomes relating to education, self-esteem and risk-taking behaviour. This is particularly the case in disadvantaged socio-economic circumstances , where outcomes can extend into adulthood.
The death of a parent through cancer can result in quite different responses in children to those who have experienced unexpected bereavement. In particular, childhood bereavement models indicate that children may experience anticipatory stress or grief due to the awareness that the parent could or will die. Research into families where adults are facing the end of life through other illnesses, such as AIDS, has highlighted the positive impact of dying parents planning for their children. For example, by promoting relationships with the new carer and developing lasting important memories together.
This research shows that even young children benefit from preparation and timely information, to help them to make sense of a very difficult situation and to receive support from the surviving parent or guardian. Resources such as memory boxes can help the parent to have these difficult conversations, as well as enabling the children to maintain their bond with their parent after their death.
Parents know their children better than anyone else. Deciding whether or not to tell their children about the cancer is a very difficult decision. Research shows the importance of supporting parents, not only to talk openly and honestly with their children, but also to continue caring for them throughout all stages of the illness.
It appears that this could have a significant impact on the long-term adjustment of children and their ability to develop their resilience, strength and confidence in the face of adverse situation. Doing so could also help reduce parents’ distress, and even strengthen family relationships. Enabling parents to access this support from the point of diagnosis, and continuing to support them throughout their illness, appears particularly important. This seems to allow the highest chance of reducing long-term psychological difficulties for children and their families.
1 Bryant LH, Walker S et al. Impact of parental anxiety on child emotional adjustment when a parent has cancer. 1997. Oncology Nursing Forum. 24: 655-661.
2 Macmillan Cancer Support. Talking to children and teenagers when an adult has cancer. 2013.
3 Barnes J, Kroll L et al. Factors predicting communication about the diagnosis of maternal breast cancer to children. Journal of Psychosomatic Research. 2002. 52: 209-214.
4 Issel LM, Ersek M et al. How children cope with mother’s breast cancer. Oncology Nursing Forum. 1990. 17: 5-12.
5 Kroll L, Barnes J et al. Cancer in parents: telling children. British Medical Journal. 1998. 316: 880.
6 Ribbens McCarthy J and Jessop J. Young People, Bereavement and Loss: Disruptive transitions? 2005. National Children's Bureau. London.
7 Worden JW. Children & grief: When a parent dies. 1996. New York: Guilford.
8 Christ G. Healing children’s grief: Surviving a parent’s death from cancer. 2000. Oxford University Press. 9 Cohen D (in ref 8). 2000
Email Dr Claire Delduca, Macmillan Clinical Psychologist at the Velindre NHS Trust.
Continue reading Sharing Good Practice
Part 1: Psychological support - Dr Anne Johnson, Macmillan Consultant Clinical Psychologist, Velindre Cancer Centre.
Part 2: Evidence base - Janice Rees, Macmillan Consultant Clinical Psychologist, Cardiff and Vale University Health Board.
Part 3: Acceptance and Commitment Therapy - Dr Claire Delduca, Macmillan Clinical Psychologist, Velindre NHS Trust.
Part 4: Helping parents with cancer support their children - Dr Claire Delduca, Macmillan Clinical Psychologist, Velindre NHS Trust.
Part 5: How a clinical psychologist can support shared decision-making - Dr Rachel Criddle, Macmillan Clinical Psychologist, Cwm Taf University Health Board.
Part 6: Psychological supervision for staff - Dr Rachel Criddle, Macmillan Clinical Psychologist, Cwm Taf University Health Board.
Part 7: Extend your psychological support skills - Resources and training for professionals.