Emotional support for your child and family

As a parent our natural instinct is to protect. This may mean you want to delay talking to your child about their diagnosis and prognosis for as long as possible. However, research has shown that it is better to have honest and open conversations as early on as possible for the following reasons:

• Children have a remarkable capacity to cope with their condition when they are given age appropriate information about their condition and they have the chance to ask questions.
• Even very young children can sense when parents and other family members are upset or something is wrong.
• As they grow older they will become increasingly aware of changes in their condition and wonder why they feel different to their peers. An explanation of their diagnosis and prognosis will help them to understand those differences.
• Children increasingly have access to the internet and will search for information anyway. Often this information is inaccurate and can lead to unnecessary worry and anxiety.
• Your child may want to protect you and avoid raising the subject despite wanting to talk about it. Your child will take the cue from you about whether they can talk about their concerns.
• There is an expectation that your child should be involved as far as possible in managing and making choices about their own medical condition, which is difficult if they are not informed about their condition.
• You may be worried about how to talk with your child about their diagnosis and prognosis. A good starting point is to listen to your child and find out what their understanding is. When they ask questions, you can give them the information they have requested. It is best to give out small amounts of information at a time and you may need to repeat some of the information. Create further opportunities for your child to ask questions when they feel ready.
• Where possible it is helpful to have both parents available to talk to your child or perhaps another family member such as a grandparent or someone else close to the child. If your child is in hospital or a hospice you can ask staff to help you have these discussions.
• Remember that any other children in your family are likely to have questions and concerns about their brother or sister. Generally speaking it is best to keep them in the picture but avoid giving them more information than your child with the life limiting condition, as this requires your other children to keep secrets. Together for short lives has some wonderful information on this subject.

There are a range of sources of emotional support for your child and your family:

• Spiritual caregivers from the appropriate faith for you. If you are in hospital or hospice talk to a member of staff about what spiritual care is available and ask if the appropriate person can be contacted. The hospital or hospice will have a chapel or multi-faith room.
• A paediatric psychologist can help you and your child cope with the emotional demands of the illness. Ask for a member of the medical team or your GP to make a referral for you.
• A social care worker can undertake an assessment of your child and yourself as a parent carer and these assessments should include exploring the emotional impact of the illness on your child and family. The social care worker can work with the medical team and professionals in the local area to make sure you get the emotional support you need and to help access appropriate additional support where available, including: welfare benefits advice, charity and social fund applications and liaising with your employer.
• Your local children’s hospice can provide you and your child emotional support as well as a wide range of other services such as day care,respite breaks, telephone advice, hospice at home.
• Your family GP will be an important part of your child’s medical care and can provide emotional support for you and your child. They will often have a good understanding of the impact on your whole family and be able to refer for more specialist services to support you and your child’s mental health and wellbeing as necessary.
• The Community Children’s Nursing Team will provide emotional support as well as nursing support and care in the home. Your local paediatrician will also give additional support as well as overseeing your child’s physical health care needs.
• Action for Carers in Surrey can provide support to you and your family including siblings under the age of 18 and those siblings between 18 and 24. Providing care, this includes local carer support groups where you can meet other carers.