My New Year Resolution is to keep this blog up to date! I thought I would take snippets from my presentation at the ‘Creating Connections’ conference and expand different sections through this blog. I look forward to any comments.
When we start thinking about siblings of children and adults with a disability or chronic illness or mental illness (I will use the term ‘disability’ to encompass all these meanings), we have to start with the family. What do we know about families? What support do they need? When?
We know that the number of families which include someone with a disability is increasing. In Australia there are over 200,000 young people under 25 years who are living with a severe or profound disability. There are many more with chronic illnesses and mental illness and there are many more who are older than 25 years. Families which include disability are more like other families than not – they love and laugh and cry just like all families, and want to connect with the community just like other families. However, there can be more stresses and these stresses affect the WHOLE family. This time I will focus on the experience of parents, my next blog will focus more on siblings.
If we consider parents, we know that some are enriched by the experience of having a child with a disability and cope with the stresses very well. Some parents need more support to move forward and manage the day to day experiences.
We know that parents of a child with a disability have higher rates of depression. The 2008 AIFS report The Wellbeing of Australians: Carer Health and Wellbeing (the largest ever survey into the health and wellbeing of Australian carers) found:
1) More than 1/3 family carers in Australia are severely depressed and/or stressed and
2) The presence of a person in the household who requires care severely compromises the wellbeing of other family members, whether they have primary carer responsibility or not.
We also know that families which include disability have a higher rate of marriage breakdown. Why might this be so? We know that a mother and father’s reactions can be quite different. Most people, when expecting a child and asked what they hope for, will say that they “don’t care as long as it is healthy”. When the child is not healthy it can create a huge amount of grief and uncertainty that can go to the core of a person’s self perception and world view. So many things come into play – in particular, the meaning they place on having a child with special needs. A dear colleague, Dr Liz Bruce, now deceased, spoke at our 2004 conference about parents’ reactions as being akin to post traumatic stress disorder. Through the many workshops I have run both in Australia and overseas I have seen firsthand how the grief can affect individuals and their relationships. And not many have an opportunity to really work through the feelings. Parents are tired of the clichés, “you must be so strong to cope with this”, or “you only get given what you can cope with”, or “you were specially chosen to care for this special child”. All of these comments result in parents not feeling they can talk about their true feelings. They can struggle with expressing the grief as they can be concerned about what that means in terms of their feelings about their child. It can be too difficult to share even with a partner. Many mothers and fathers just cannot support each other and, without outside support, it can become all too difficult to maintain the relationship. And many parents don’t ask for help for themselves as the focus is on the child and what he or she needs.
Of course, many relationships are strengthened by the experience of having a child with a disability. Parents can become closer and learn to share the challenges, joys and triumphs along the way.
But, in general, we do not provide enough support in the early period after diagnosis. All members of the family should have support immediately in order to process feelings, both individually and together. Parents need help to understand that feelings of loss or grief or anger for what they envisaged of the future are totally understandable and do not mean they love their child any less. Their idea of the future might eventually need adjusting. Once they feel able to grieve for ‘what was’ they are more likely to move forward with ‘what is’ in a constructive way. If we can support WHOLE families in the early stages it sets the scene for families to be stronger and more able to support each other in the longer term – and that includes siblings.
Again I welcome your comments.
Further reading:
Cummins, R.A., Hughes, J., et al. (2008)The Wellbeing of Australians: Carer Health and Wellbeing
Bruce, E.J. Elite Parenting: Mother, father, siblings and children adapting to disability. Sourced from http://www.emotionalhealthcentre.com.au/elite.htm
Thursday, January 7, 2010
Monday, December 7, 2009
Siblings as Carers?
Welcome to my first ever blog. Having just had our 2nd National Conference, Creating Connections in Adelaide, it seemed a good time to start. It was a wonderful event with a number of highlights for me.
Of course it was a celebration of the work being done for siblings around Australia, and also in the US. It was also an opportunity to connect with other family members, providers, researchers and policy makers, share current research and think about future directions in sibling support. The adult sibling sessions provided a unique opportunity for siblings aged from 17-73 to come together and share perspectives and future needs.
Through this blog I will reflect on a number of issues related to siblings of people with a disability. Hopefully the posts will encourage some discussion around these topics.
This first one will focus on the link between siblings and the term ‘carer’
For some time now I have had some concerns around the use of the word ‘carer’ and ‘young carer’ in relation to siblings. The conference strategy session reinforced this view, and gave a very clear message that siblings needed to be considered separately from the terms ‘carer’ and ‘young carer’.
Let me state from the beginning that I am aware of the tremendous work done by carer and young carer programs around Australia and this reflection is in no way a criticism of that work. I am just highlighting some difficulties around the use of the words in reference to siblings of people with disabilities. So what ARE some of the concerns? In no particular order:
• Often siblings, especially when young, take on a ‘secondary carer’ role, to the parent's 'primary carer' role and so can be overlooked by carer groups
• Siblings do not relate to the term ‘carer’ – they see what they do is an extension of being a brother or sister. They are less likely to respond to ‘carer’ programs than sibling ones
• There is some overlap between the issues for carers and for siblings but there are also some very big differences
• Siblings can have some difficulty developing their own identity. If we start to identify them as ‘young carers’, this process can become even more difficult. Also the label is likely to last a lifetime, of course changing to ‘carer’ as they age.
• There need to be choices in any caring role – young people find it much more difficult to make those choices
• Maybe the term ‘carer’ can be more acceptable as siblings age and parents are no longer around to provide care but it still seems that both the sibling and the person with a disability do not like the term ‘carer’
• We just conducted an online survey of adult siblings and had over 90 responses. Overwhelmingly sibs said they did not want to be seen as a carer to their brother or sister with a disability – they saw themselves as brothers and sisters first
• They believed that their brother or sister with a disability preferred them not being seen as their carer. It is understandable, from a dignity point of view, that people with disabilities would prefer their brothers and sisters to be just that, and not their ‘carers’
• Using the term ‘carer’ or ‘young carer’ legitimises the roles that carers play, which in some ways is a good thing, but on the other hand it also makes it easier for governments to not take responsibility for the lack of services. Does the government expect siblings to take over the caring role? Some would argue this is not reasonable of governments. However, if this is the expectation, surely there should be some open discussion about this. Siblings need to be supported in whatever role they choose to play. And of course that may change markedly over a lifetime.
Of course it was a celebration of the work being done for siblings around Australia, and also in the US. It was also an opportunity to connect with other family members, providers, researchers and policy makers, share current research and think about future directions in sibling support. The adult sibling sessions provided a unique opportunity for siblings aged from 17-73 to come together and share perspectives and future needs.
Through this blog I will reflect on a number of issues related to siblings of people with a disability. Hopefully the posts will encourage some discussion around these topics.
This first one will focus on the link between siblings and the term ‘carer’
For some time now I have had some concerns around the use of the word ‘carer’ and ‘young carer’ in relation to siblings. The conference strategy session reinforced this view, and gave a very clear message that siblings needed to be considered separately from the terms ‘carer’ and ‘young carer’.
Let me state from the beginning that I am aware of the tremendous work done by carer and young carer programs around Australia and this reflection is in no way a criticism of that work. I am just highlighting some difficulties around the use of the words in reference to siblings of people with disabilities. So what ARE some of the concerns? In no particular order:
• Often siblings, especially when young, take on a ‘secondary carer’ role, to the parent's 'primary carer' role and so can be overlooked by carer groups
• Siblings do not relate to the term ‘carer’ – they see what they do is an extension of being a brother or sister. They are less likely to respond to ‘carer’ programs than sibling ones
• There is some overlap between the issues for carers and for siblings but there are also some very big differences
• Siblings can have some difficulty developing their own identity. If we start to identify them as ‘young carers’, this process can become even more difficult. Also the label is likely to last a lifetime, of course changing to ‘carer’ as they age.
• There need to be choices in any caring role – young people find it much more difficult to make those choices
• Maybe the term ‘carer’ can be more acceptable as siblings age and parents are no longer around to provide care but it still seems that both the sibling and the person with a disability do not like the term ‘carer’
• We just conducted an online survey of adult siblings and had over 90 responses. Overwhelmingly sibs said they did not want to be seen as a carer to their brother or sister with a disability – they saw themselves as brothers and sisters first
• They believed that their brother or sister with a disability preferred them not being seen as their carer. It is understandable, from a dignity point of view, that people with disabilities would prefer their brothers and sisters to be just that, and not their ‘carers’
• Using the term ‘carer’ or ‘young carer’ legitimises the roles that carers play, which in some ways is a good thing, but on the other hand it also makes it easier for governments to not take responsibility for the lack of services. Does the government expect siblings to take over the caring role? Some would argue this is not reasonable of governments. However, if this is the expectation, surely there should be some open discussion about this. Siblings need to be supported in whatever role they choose to play. And of course that may change markedly over a lifetime.
Ultimately we need to be mindful of sibling issues being lost under the ‘carer’ umbrella. I look forward to your thoughts.
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