Diagnosis – the impact on the family

Gaining a diagnosis for a condition is often a very positive thing, as a child’s behaviour or symptoms are suddenly explained. Once you have a diagnosis, treatments, therapies or other support can be put in place and this can provide huge relief for a family. However, even if the diagnosis is for a condition that is easily managed and has a minor impact on daily life, it can still demand a shift in family routines and priorities. 

Often the diagnosis of a medical condition or other specific need is shattering for a family, whether that diagnosis happens at birth or years later. Frequently, a child may appear to be happy and healthy but later start to show symptoms of a condition, concerning behaviour, or even begin to regress developmentally. It can take a family some time to realise what is happening and for parents to start asking questions and seeking answers.

4 blue characters. The first appears to be a doctor explaining something. He is waving his hand around and wearing a stethoscope. Looking at him, looking confused are a man and woman, behind them is a small girl who is screaming, with her hands in fists by her side.

The process of finding a diagnosis can take many months, even years. Doctors may initially fail to take parents’ concerns seriously. It can be expensive and hugely stressful as tests and assessments are carried out. Even negative results can cause stress as the family worries about what the true diagnosis might be.

The effect on the siblings

During the diagnosis, siblings may feel confused about what this means for their disabled brother or sister and what the future holds. They may see their sibling change over time. For siblings of children with a disability, the brother or sister they imagined playing games with or relying on whilst growing up may not exist now.

Where a younger sibling surpasses a disabled sibling in physical or academic ability, negative emotions, such as jealousy or guilt, may emerge. This is confusing and a difficult situation for all siblings to process. It can be very lonely for them as they watch what is happening.

A blue child character is standing looking confused. There are question marks around their head.

Grief

This experience can often lead to feelings of grief as the child the family visualised has gone. As part of the grieving process, siblings may go through a range of emotions: denial, guilt, anger, depression, and acceptance are commonly identified as emotions associated with grief:

Denial- the sibling may not accept their brother or sister has a disability. It may take them time to accept that something is now different or that their sibling is not pretending.

Guilt – the sibling may feel it is their ‘fault’ that their sibling is ill or less able than they are. They may think that they have done something to cause it.

Anger – Anger is a common emotion, particularly if a young person is dealing with puberty and other external pressures. A sibling can be angry with the brother or sister for being ill, disabled or needing extra help and attention. They can be angry with their parents if it seems their needs come second. They can be angry with themselves for feeling all of these emotions.

Depression – a sibling may get feel very sad, despondent and even clinically depressed. This may lead to isolation, poor performance at school or in hobbies, and even self-harm.

Acceptance – a sibling may feel relieved that the sibling has been identified with the need and that help and support may be found. They may be glad they can help and be supportive.  

Diagnosis

When a diagnosis is finally made, then the family embarks on a journey of readjustment emotionally and physically. Diagnosis may lead to a regime of treatment and therapies, changes in the way a household runs and the way a family behaves towards each other. Often during all of this stress the sibling comes second, even if the parents try to prevent it. 

Whilst the family is concentrating on one child, the siblings may not get the attention they need. Even when a family makes every effort to ensure a sibling is properly supported, involved and loved, things can get missed. Issues include the siblings’ own conditions being missed as they do not receive the level of attention needed to diagnose their own conditions. Alternatively, their conditions may be misdiagnosed as being stress related, or similar. 

A family of blue characters. The mum and dad are looking worried and confused at a small girl who is screaming. Standing off to one side watching is a boy, looking unhappy.
Parents’ attention is often focussed on the child with the special needs.

Example:

Consider Simeon; Simeon’s little sister, Emmy, was diagnosed with cancer. Emmy was 2 and Simeon was 4 years old. Emmy had to undergo surgery and intensive chemo and radiotherapy. It meant that their parents, especially Mum, had to spend days, nights and even weeks at the hospital. Simeon was often looked after by his Grandmother. Sometimes spending nights at her house. He was taken to and from school by a friendly neighbour. Mum and Dad’s priority was to ensure he was happy and loved. They were not worried that he wasn’t performing at school as it was understandable with all the upheaval. It wasn’t until Emmy’s treatment finished, after a year and a half, that Mum and Dad realised how much Simeon had been struggling at school. Even then, they were exhausted from months of hospital stays and treatments and were now learning how to deal with Emmy’s disabilities following the cancer treatment. They needed to adjust to her needs, many of which wouldn’t become obvious until she matured. The battle for her education and ongoing medical scans, assessments and monitoring continued to take up a lot of time and energy. During this time, Mum and Dad did their best to ensure that Simeon was supported and that teachers were helping him at school. Despite this. Simeon began to exhibit extreme anxiety and he continued to find academic work and social interactions challenging. His parents and school attributed most of Simeon’s struggles to his sister’s battle with cancer, so counselling and some extra help in school was put in place. It wasn’t until Simeon was 9 that his own difficulties with reading and writing were formally diagnosed as dyslexia, and he was 13 before he received his diagnosis of autism.   

In the example above, serious diagnosis of cancer for one child meant that another child’s needs were misunderstood, despite the best efforts of the parents and extended family. 

This is very difficult to avoid, especially when one child’s needs are very demanding but, every effort should be put in place to enable siblings to be heard. They need space to express their own worries and concerns, and for parents to spend time with them alone.

Ensuring understanding

Ensuring other children in the family understand what is going on so they can be part of the journey is essential. Being clear and honest, using language that is appropriate for that young person and not full of medical jargon, is vital. In the example above, Simeon’s Mum and Dad would take him to the hospital regularly and he would often inspect hospital wards and playrooms for his little sister. They explained to him about his sister’s ‘naughty lump’ and he would help the nurses change her dressings. With an older sibling being more direct and ensuring they have a chance to ask questions and have them answered honestly and clearly is vital.

If a child is not involved in what is going on, they will use their imagination. They will just see hospital visits as days off school. They will see clinic appointments as time spent with mother or father. They will see parents giving therapies, cleaning and dressing a child as extra attention for them. So ensure that they understand why parents have to divert their attention, that is does not mean that there is any less love for them and that you understand why they might feel the way they do.

Key Points

~ getting a diagnosis for a condition can be a traumatic thing – the process can be lengthy and the final diagnosis can mean huge changes for a household.

~ For siblings, it can lead to feelings of confusion, guilt, resentment and loneliness

~ Make siblings part of the process so they can better understand what is happening and why, give them a chance to express how they feel.

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