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Living with uncertainty – the siblings voice

“When your brother or sister is in hospital, you don’t know what is going on… it’s the thought, when they go into hospital; what’s going to happen, and wondering if they’re going to make it back or anything”.

These are the words of one of the siblings who participated in my PhD research (An evaluation of a model of care for children with serious illnesses and their families).  It was a stark reminder of the huge uncertainty healthy siblings live with when their brother or sister is in hospital.  Often as health professionals, we can underestimate the impact of a child’s health condition on their siblings.  They can at times appear to be the ‘invisible other’ within a family.

A group at risk

Kate Strohm[1] an Australian counsellor is well known for her work with siblings. She herself is a sibling to a sister with cerebral palsy.  In her book, ‘Siblings’ she explored risk factors and protective factors that influenced adjustment when siblings had a brother or sister with special needs.  She identified siblings as a group ‘at risk’ of future mental health problems if they did not have access to psychological support.  These risk factors included; not having information on understanding about their brother or sisters’ special needs; not being able to communicate to others their thoughts and emotions, and their experiences of isolation. Whereas, protective factors included, open communication, strong connections with others and external emotional support.

True Colours support many siblings, recognising the challenges they face on a daily basis.  At times, siblings endeavour to ‘protect’ their parents by not adding to their parents worry or busyness, so therefore do not always tell them how they are feeling.

The pressure on parents

Parents on the other hand, are often well aware of their healthy children’s vulnerabilities. However they may not have the capacity to attend to their entire needs.  These parents are already ‘stretched’ emotionally and physically in caring for their child with the health condition.

One parent who participated in the research said,

“My middle child doesn’t get much time with me… she acts out. So coming and seeing a counsellor makes her feel special and she doesn’t feel left out”.  Another parent stated, “Being able to care for the siblings has actually been hugely beneficial for our family to be able to cope.  He [well son] has had one on one counselling which has made a huge difference for him.  Even the siblings pay a price, when they are in a family with a child with extra needs”.

The effect on siblings

At times, a sibling’s teacher at school may notice changes in a child’s behaviour.  They may become withdrawn, angry, being bullied, or become the bully, they may be sad or their school work begins to decline.  Behavioural changes in siblings are always important to notice. While they may not be able to articulate their thoughts, their behaviour is usually a key indicator that things are not going well for them.

When siblings visit True Colours house, they may choose to share their thoughts with their counsellor or express themselves in their play, art or music therapy.  It was evident from the research that families appreciated care that included the whole family.  This sibling expressed his thoughts of what he valued when he met with his counsellor,

“The counsellors help you to think about the good stuff about your family and help you forget about the bad stuff… cos they like… talk about the good stuff and only a tiny bit of the bad stuff”.

Over many years, I have witnessed siblings of children with complex health conditions adjust and compromise their lives to fit around their sick brother or sister’s health needs.  As a result they can suffer from anxiety and have a sense of helplessness and powerlessness to change their situations.  I often admire their resilience and capacity to adapt to their ever changing circumstances.  While there may be empathy, care and kindness shown to their brothers or sisters, at times there is frustration, resentment and anger that is evoked due to their circumstances,

Siblings matter too

How a sibling copes in the light of their brother or sister’s health condition can often be underestimated or overlooked.  One of the mantras at True Colours is to, ‘listen to the voice of the child’; this very much includes the voice of the sibling.

It was evident that the siblings who participated in my research found counselling support helpful in reducing their anxiety and sadness.  They appreciated having fun and distraction from the uncertainty of living with their brother or sister’s serious illness, care and treatment needs.

Therefore it is important that sibling’s voices are not left out of health policy and health development.  Their views are critical, particularly as child health care endeavours to work within a family centred care model and therefore in partnership with all family members.

This sibling’s viewpoint encapsulates what many other siblings think is important;

“Sometimes there are some things you cannot do… sometimes there are special things you cannot do together… the counsellors help you to have fun… like when you are really sad or something… the sad feelings just go away”.

True Colours is and will always be a strong advocate for siblings.
[1] Strohm, K. (2014).  Siblings. Australia: Wakefield Press


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