Adjusting to a diagnosis in a child. Nurse specialist Sarah Regan from Great Ormond Street Hospital in London gives advice to parents and carers on the best approach
The diagnosis and impact of cardiomyopathy on a family presents many challenges for children, parents, siblings and the wider family.
There are four key challenges faced by parents:
♥ Diagnosis
♥ Ongoing/chronic issues
♥ Coping with a change in health status
♥ Coping with developmental changes
Parents need to adjust to the news that their child has a condition that will affect them for their lifetime.
They have to cope with the loss of an imagined future or loss of a ‘healthy child’. There is an increased load both emotionally and practically for parents, particularly associated with the uncertainty of the course of the condition and the future.
There are ongoing challenges that will have an enormous impact upon the family — frequent hospital appointments, emotional impact of the illness, impact on family work and finances, and the effect on relationships in the family.
The change in your child’s health status creates anxiety, and families have to cope with setbacks and cope with everyday illnesses too. This can involve becoming used to daily medication regimes, juggling family needs and demands, and handling the unpredictability of the condition.
Our experience suggests that most families adjust well. Good communication between family and health professionals is key as is the stability of family and school.
Challenges for children
These include understanding their condition, coping with invasive procedures, disruption to routines, developmental stages and loss of imagined or planned futures and identity.
Children often want to continue going to school even when feeling very poorly as it helps them to continue to lead lives that are as normal as possible.
But they need stability and predictability to feel safe. Being in hospital, missing school, or not being able to take part in peer activities can be worse for children who already feel at a disadvantage. So help them keep up friendships and school work.
Symptoms such as tiredness, lethargy, nausea, chest pain, dizziness, and palpitations will disrupt home and school routines. So it helps if teachers and carers can gain an understanding of the condition and how symptoms can affect a child’s concentration and behaviour. Regular contact between the school and parents on the child’s health and how they are coping are vital.
Children need to develop independence from their parents and medical team as they grow older. The medical team has the responsibility of developing children’s coping skills and helping them to understand their condition.
Children’s understanding of their illness is influenced by their age. For example: aged four to seven may see it as magic or a punishment, and seven to 11 may think they have caught it. As they get older they will realise the nature of the heart problem but psychological and other complex factors will come into play.
Adolescence
The incidence of psychological problems for children with chronic health conditions increases with age.
The degree of debilitation and pain is associated with psychological difficulty. The visibility of their disease, such as scars, colouring and swelling around the face, can affect on-going stress levels.
Changes in behaviour
Key points for parents ♥ Seek information and support from your GP, specialist team and the CMA
♥ Look after yourself
♥ Talk to your child openly and honestly about their condition
♥ Encourage your child to express his or her feelings
♥ Prepare for painful procedures by talking about control and rewards
♥ Help your child to develop coping skills and independence
Separation anxiety, tantrums, attention-seeking behaviours, sleep problems, bed-wetting, decline in school work, withdrawal from friends and family and poor adherence to treatment are all signs that a child is not coping with life.
If a change of behaviour persists over weeks or months and your usual strategies don’t work, talk to your specialist team.
When attending appointments
At appointments children should be:
♥ encouraged to talk to doctors and nurses on their own and with their families
♥ encouraged to ask questions
♥ introduced to other affected children and their families
♥ made aware of other support available such as psychology services
Challenges for siblings
The focus for families is obviously mainly on the sick child. So it can be very difficult for siblings to discuss their feelings. Siblings can cope in different ways, for example:
♥ exhibiting challenging behaviour
♥ getting angry with the sick child and withdrawing from them
♥ not telling parents about their own worries
Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.
The