Parents

A child’s diagnosis with cancer or a blood disorder is likely to have an enormous impact on the parent’s relationship. The path the relationship takes after diagnosis can often be dependent on:

• The foundation of the relationship prior to diagnosis – where there is a history of difficulties, the stress of the child’s illness may exacerbate the problems that already exist.
• Each parent’s stress management strategies and how they work together.
• Established communication patterns – if parents are unable or unwilling to communicate with each other, they may feel isolated and misunderstood.
• Their values and beliefs about treatment and their child’s health – some parents discover they have different views about their child’s illness and treatment and this can be a source of conflict.

Whilst diagnosis may sometimes be the cause of relationship problems, it can also help to bring parents much closer together.

Some useful strategies for parents

• Be patient and compassionate to each other.
• Keep the communication lines open.
• If possible, try and work out some sort of roster whereby you can each share the care of your sick child in Hospital and other siblings at home. If there are no other siblings, then acknowledge that sharing the care will enable you each to take a rest or have time to yourself. This way you will both be actively involved in the care of your child.
• If it is necessary for parents to assume different roles (i.e., one being the primary carer of the sick child and the other running the home, going to work, etc), then acknowledge to each other that both roles are vital to the care of the sick child.
• Compromise – life will change and it may be necessary to make sacrifices for each other in order to adapt to the new challenges that have arisen.
• Look after yourselves physically and mentally as it will allow you to be the best support to your child.

Siblings

• • Other children in the family may feel resentment at being neglected. This may be true to some degree because the demands of a sick child means sometimes parents are unable to maintain the same attention level to all their children.
  • Behavioural changes in brothers and sisters are common and can indicate they are having difficulty adjusting to what is happening within their family. These changes may include withdrawal, changes in school behaviour or attention seeking behaviour.

All of these reactions are normal.

The following strategies may be helpful in supporting siblings:

• Parents can help siblings by including them, sharing their feelings and talking openly. Keeping them well informed in an age appropriate manner will help them understand and accept the situation and allow them to acknowledge their own feelings.
• Continually monitor siblings throughout the child’s illness. Look for changes in appetite, sleep, mood and behaviour. Also check their school progress regularly with their teachers.
• Make the most of the times when you do have the energy or emotional reserve – spend time alone with your other children, recognise their achievements or activities and do things together that interest them.
• Let them know their feelings of fear and resentment are normal. Giving them a chance to share and participate in the family’s crisis will encourage healthy growth and maturity. Allowing them to respond in helpful ways gives them a sense of belonging and helpfulness.
• Try not to expect too much of the siblings or, conversely, be too over protective of them.
• Always keep them informed. Anticipate questions or comments and discuss them with your other children so they are well equipped for queries from friends, people at their school or perhaps other family members.
• Maintain a relatively normal routine at home. Minimise disruptions to normal family functioning where possible. Try to keep up your normal methods of limit setting and discipline.
• Encourage siblings to have as much contact as possible with the ill child. Phone calls, letters and hospital visits are a good idea. Avoid exposing siblings to situations that are extremely distressing for the patient.
• Talking with staff at the hospital can also be helpful, whether it be the doctor to clear up medical uncertainties, or the Social Worker to discuss fears and other feelings the siblings are experiencing. Discussing the situation with the sibling’s teachers may also assist in the experience.

Extended family and friends:

It is important to remember it is not only the immediate family affected by the child’s diagnosis. Grandparents, extended relatives and family friends are also affected.

Remember they will need and want basic information about the disease and its treatment. Some parents will find it overwhelming to repeat information endlessly so it may help to give them written information or allocate a “key” person to help impart information to others.

Ideally these people can provide support and assistance, in the form of baby-sitting, meals or with practical problems such as picking other children up from school or becoming the temporary primary care giver in the family home.

However, sometimes they are not always able to assist, particularly grandparents as they may feel lost, anxious and helpless too.

Remember grandparents are not only worrying about their grandchild, but also about their own child (you). Assistance can be given by staff at the hospital who can help support the grandparents in a number of ways e.g; giving them medical information to help them understand.

Above all, honesty is the best policy when dealing with extended family and friends. People may want to help but don’t know how and/or are too worried about intruding. It may be helpful early on to be honest about what you are feeling, what your needs are and how they can help.

You may need to point out that spoiling or over indulging your child or their siblings may not in fact be helpful and that both you and your child would benefit most by being treated as normal as possible.