If you are working with disabled children or adults and their families, or supporting carers, you will find information in this section on the needs of siblings and how you can support them.
The needs of siblings
The needs of young siblings
Most young siblings experience lack of parental attention, isolation, ignorance about disability, difficulty coping with their experiences, and the financial impact of disability on the family. Many studies on siblings of children with a chronic illness indicate that siblings are at risk for negative psychological effects.[1) When we talk to siblings, parents and professionals, the picture that emerges is that many siblings are struggling to cope with the emotional and practical demands that being a sibling entails. Even though they have these needs that require attention at different stages of their lives, young siblings are often marginalized by their families, society and service providers.
Lack of parental attention
Siblings grow up in a family where, regardless of the age of the sibling, the majority of family resources, parental attention, and professional services are directed, indefinitely, towards another child (i.e. the disabled child). Throughout their lives, siblings' needs come second to that of another person. Many siblings feel that they get a lot less attention from their parents compared to their disabled brother or sister. In the majority of families the attention gap is real, yet even when parents do all they can to share attention out, siblings still feel that they get less attention. As a result, siblings often experience feelings such as intense jealousy, resentment towards their disabled brother or sister, and believe that they are not seen to be as important or special as their brother or sister. Siblings may receive more negative attention from parents than peers in a similar situation. Parental depression and anxiety is prevalent in parents of disabled children and affects the amount and quality of attention parents can provide. Other parents devote huge amounts of time to disability causes which can take their time away from siblings. Significant loss of parental attention will have negative implications for siblings' self esteem, academic performance, and behavioural and emotional development. Siblings themselves can have their own health and learning needs overlooked, as they may not appear significant in comparison to those of the disabled child.
Ignorance about the disability or condition
Siblings rarely receive accurate and age appropriate information about their brother or sister's disability or medical condition. It is common for siblings to lack the basic knowledge and information they need to understand the circumstances in which they find themselves; in the absence of accurate and appropriate information they may develop their own theories to make sense of their situation. This can be the cause of self-blame and guilt and a range of erroneous views that can extend even into adulthood. In situations where disabled children with challenging behaviour hurt siblings or damage their belongings, siblings often believe that this is because the disabled child doesn't like them; this 'taking it personally' will continue until the sibling has a full understanding of the condition and its effect on behaviour. Siblings of children with life limiting conditions are least likely to be well informed about their brother or sister's condition, even though children who are informed about prognosis show less anxiety than those who are not informed
Until siblings meet other siblings at sibling groups they often believe that they are the only ones. It is not enough to point out another sibling and say that "He or she also has a brother with autism". Siblings need to hear other children talking about their experiences of family life in order to really know that other people understand what it is like for them. The majority of adult siblings who contact Sibs have an average age of 40 - the stage in their lives when they need support with future care issues. Their sense of relief at being able to talk to another adult sibling is palpable; almost always having their unique experiences and feelings validated for the first time. 40 years is too long to feel you have to cope alone; it is not acceptable for parents of disabled children and should not be acceptable for siblings either. Difficulty with having friends back to their home can limit opportunities for time with peer group outside of school.
Siblings can experience challenges that other children do not and they regularly find themselves in situations that can be difficult to manage; situations such as dealing with a brother or sister's challenging behaviour or coping with feeling embarrassed in public when people stare. A study of adolescent siblings of children with severe disabilities found all were struggling to cope with their situation. Many young siblings can give the appearance of coping during childhood and indeed seeming more mature and well-adjusted than peers. At sibling groups however, it often becomes apparent that many coping siblings have internalized their feelings. Siblings, through their close relationship with the disabled child, often experience prejudice, bullying, limited family activities and exclusion from mainstream activities. The extent to which siblings manage to cope can crucially depend on their individual character and resilience. The situation can be exacerbated if the parents/carers themselves have difficulty coping and cannot adequately support the siblings. Many siblings are young carers, providing help with things like personal care, communication, translation at medical appointments, and entertaining their disabled brothers and sisters. About a third of children at young carers' projects in the UK are siblings. Siblings of children with a life limiting condition have to deal with the additional issues of anticipatory grief and bereavement, and often grow up in 'houses of chronic sorrow'.Over a third of Sibs enquiries are from or about siblings of children with autism, a group of siblings who may be at increased risk of negative impact due to the nature of the disability and its effect on family dynamics and family stress levels.
Siblings are more likely than their peer group to be raised within a family that experiences poverty. 93% of families of disabled children in the UK are struggling financially. Family expenditure to meet the needs of the disabled child means that fewer resources are available for the needs of siblings.
Positive aspects of being a sibling
Being the sibling of a disabled child can also bring positives, such as increased maturity, increased tolerance of others and enhanced communication skills. However, these skills and attributes may be acquired at a cost of the above to siblings.
More research is needed
There is a need for further research on the needs of young siblings who currently have a disabled brother or sister. The variables that affect psychological adjustment in siblings are wide ranging – such as the parents' ability to cope, the sibling's temperament, the nature of the disability, the family's communication style, parental depression, amount of caregiving required for the disabled child, and the amount of care being provided by siblings. From our experience it would seem that being a sibling today is harder now than it was 20 or even 10 years ago due to the increased numbers of disabled children with complex medical needs, the diminished availability of extended family for support, the inadequacy of services for families of disabled children, and the fact that the majority of siblings are the only sibling in the family.
1. Rossiter, L and Sharpe, D (2002), Siblings of children with a chronic illness: A meta analysis, Journal of Pediatric Psychology
2.Burke, Burke, P (2004), Brothers and Sisters of Disabled Children, Jessica Kingsley Publishers Ltd
3.Lobato, D and others, (1991), Preschool Siblings of Handicapped Children: Interactions with Mothers, Brothers, and Sisters.
4.Veisson, M (1999), Depression symptoms and emotional states in parents of disabled and non-disabled children, Social Behaviour and Personality.
5.Waechter, cited in Walker C. L, (1993), Sibling bereavement and grief responses, Journal of Pediatric Nursing.
6.Opperman, S and Alant E, (2003), The coping responses of the adolescent siblings of children with severe disabilities, Disability & Rehabilitation.
7.Dearden, C and Becker, S (2004),Young Carers in the UK. The 2004 Report. London, Carers UK.
8.Bluebond-Langner, M (1995), The Worlds of Dying Children and their Well Siblings.
9.Macks, R.J and Reeve R. E (2007)The Adjustment of Non-Disabled Siblings of Children with Autism, Journal of Autism and Developmental Disorders.
10.Fisman S et al. (1996). Risk and protective factors affecting the adjustment of siblings of children with chronic disabilities. J Am Acad Child Adolesc Psychiatry.
11.Harrison, J and Woolley, M (2004), Debt and Disability: The impact of debt on families with disabled children(York: Contact a Family & Family Fund).