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An analysis of the specific problems faced by siblings of children with brain-related conditions. 

Background

The sibling attachment is one of the most enduring and influential bonds a person will encounter in their lifetime.1 It is a complex and diverse relationship2 and has now become an area of increased research interest, as psychologists recognise and try to better understand its importance in the hierarchy of family relationships.

However, the attachment between children with brain-related conditions and their siblings is less well understood. The term ‘brain-related condition’ is wide and includes genetic conditions, acquired or traumatic brain injury, and developmental and learning disabilities.3 There are around half a million children in the UK who are growing up with a disabled brother or sister4 and due to the pervasive nature of disability, the practical and emotional impact on the typically developing sibling is likely to be profound.5 "The daily lives of children may be altered in significant ways when they grow up with a disabled sibling, and these experiences may have important consequences for children’s wellbeing and development". 6 This article outlines the ways in which a child’s life may be affected when they are raised with a sibling who has a brain-related condition.

Parental influence

Parents have the potential to influence the relationship between a child and their disabled sibling. It is not uncommon for a parent to experience acute grief reactions after receiving a diagnosis7 for their disabled child, which may result in the parents declaring excessive expectations for the typically developing child, which in turn places them under a great deal of pressure. Conversely, the child themselves may try to offset the limitations of their sibling and overcompensate in an attempt to become "perfect". 8

The age of the child when the diagnosis is given can affect parental reaction; the earlier the diagnosis, the more time the family as a whole have to become accustomed to the presence of disability within its dimensions.9 This can have an impact on the way the child interacts with the sibling, as children often model their behaviour on that of their parents.10 A positive parental interaction with the disabled child is more likely to result in the typically developing child perceiving their sibling in an equally positive way and vice versa.

Parental inconsistencies and differential treatment towards each child can be a major source of sibling stress. In many cases, and particularly for those with physical disorders, the child with the disability commands a far larger proportion of the parents’ time and energy. This "inverse ratio" 11 of parental focus can lead the typically developing child to feel resentment towards their sibling, causing tension within the relationship. Some children may indulge in attention-seeking behaviour12 , aware that their "privileged" 13 sibling gets more of their parents’ time. Attention-seeking acts are a way of seeking to ‘correct’ the inconsistency.

Children often cope better with the challenge of having a disabled sibling if they have help to understand the situation. Though parents may wish to protect their child from the realities of their sibling’s condition, lack of information may force the child’s mind to fill in the blanks, often leading to inaccurate and upsetting conclusions.14

Educating children about their brother’s or sister’s disability provides them with an important coping mechanism – knowledge. In addition to this, allowing the nature of the child’s disability to remain hidden can produce a state of detachment between the siblings, when one would ordinarily expect them to have the closest of relationships. Thus, a lack of information and poor communication can be detrimental to the sibling bond.

Parents are advised to talk to their children, not only to inform them about their sibling’s condition, but to explain the reasons why they may sometimes receive less attention and time than their disabled brother or sister. In addition to this, spending time with the non-disabled sibling can have a significant impact on their self-esteem. It is understandable that with a disabled child in the house, time and energy resources are severely depleted, but spending even a small amount of time each day with the typically developing child could make a substantial difference to their psychological wellbeing.

The effects of disability on the sibling bond

Growing up with a disabled sibling can present a number of challenges for a child. Many siblings may be expected to play a role in looking after their disabled brother or sister, with the level of physical restriction and the severity of the disability dictating the level of impact. If caregivers’ duties become excessive or unreasonable, it can be detrimental to the wellbeing of the non-disabled child. However, helping with a child’s care can have a number of benefits for the sibling, enabling them to better understand the nature of the disabling condition15 and raising their self-esteem and competencies as they are praised for helping mum or dad.

The bond that a child has with their sibling plays a key role in their self-identity. However, factors such as being overlooked within the family, over-identifying with the disabled child and, especially for younger children, lacking a traditional sibling role model can all affect a child’s development of individual identity, particularly if the children are of a similar age or temperament.16 Since "self and identity ... are fundamental parts of being human", 17 a loss of the same can be psychologically problematic and siblings require support to allow them to establish themselves as a distinct and separate entity.

One of the most significant difficulties brought about by having a disabled child in the family is the behavioural problems often associated with a neurological condition and these are reported by siblings to be one of the most salient negative effects of disability. The siblings’ self-esteem may be damaged by unusual or inappropriate public behaviour by the child with the disability,18 causing conflict within the sibling relationship that may be detrimental to the bond. Psychologists have noticed that children with developmental disorders also tend to have behavioural problems and that difficulties in the sibling relationship are related to the bad behaviour, not the disability itself. This suggests that fundamentally, sibling relationships appear to be broadly similar and that if the behavioural issues were removed, the sibling relationship in the context of disability may not be very different to that of typically developing children.

Typically developing siblings are themselves at risk of behavioural problems. They may display challenging behaviour in order deflect attention away from their needier brother or sister and onto themselves.19 Siblings are also found to display higher rates of internalising behaviours such as withdrawal and anxiety, and externalising behaviours such as aggression and disruptiveness, and this should be monitored in these children.

Unfortunately, societal stigma surrounding the issue of disability remains a problem for those children growing up with a disabled brother or sister. Children are often alert to negative societal attitudes and the behaviour of others can have an effect on the children’s relationship. This can influence the way they perceive their sibling and as such, they may avoid bringing friends home. 20 There has been an attitudinal shift in the last three decades, and an increase in education and understanding has resulted in a greater degree of empathy and compassion for disabled individuals.21 However, prejudice and ignorance have by no means been eliminated, and it is vital that young children are given support to deal with negative attitudes towards their brother or sister in order that it does not adversely affect their relationship.

Disability in the family can undoubtedly be stressful and in studies of children with disabled siblings, it has been recognised that stress is prevalent in these situations.22 It is also thought that the presence of a disabled child may impact on the sibling’s reaction to generic, everyday stress; they are consistently exposed to high levels of ordinary familial stress and appear to be sensitised to it, react more strongly to it and are therefore, less able to cope.23

Elevated stress levels are also observed in the parents of autistic children, perhaps due to the unpredictability of the condition. Excess stress levels can affect an individual’s emotional and physical health, along with behavioural and intellectual functioning and therefore, it is advisable to limit stress levels where possible, as prolonged exposure to stress can lead to adverse health effects .

There is often confusion in the literature about the precise effect that having a disabled sibling has on a child. This is due to the fact that the sibling relationship as a research topic is a relatively recent development, especially in the context of disability, and as such, there is not a great deal of existing literature to draw on. The results of previous studies have often drawn conflicting conclusions, suggesting that there is a need for more research and more long-term studies to accurately assess the impact of disability on the sibling relationship.

Taking the positives from the experience

It is important that a child’s relationship with their sibling is as strong as possible, as it has a significant impact on their welfare and development25 and so the ability to adapt to the presence of a disabled brother or sister is vital in maintaining this relationship. Researchers have found the process of adaptation to be a largely positive one, suggesting an optimistic outlook for relationships affected by disability.26 This is facilitated by ample communication within the family in a stable and supportive environment.27

A child’s social skills are fostered during interactions with other children, particularly their brothers and sisters, and the more cognitively advanced child will often use their abilities to help teach their disabled sibling. This is observed particularly with autistic children who appear to display skills when interacting with their siblings that are not seen during interactions with other people.28 The particular closeness of the sibling relationship underlines why it is so special and so important to a child’s development.

Siblings of children with disabilities, particularly those with autism, may in fact have a higher self-concept than children who do not have disabled siblings. They may compare themselves to the disabled child and have a more positive personal perception by virtue of not having the same difficulties.29

Parental and sibling reports of an enhanced appreciation of life, along with a sensitivity and understanding of the problems of others, are not uncommon.30 An increased tolerance for others as well as a higher level of insight into people’s needs and a greater empathy for their problems31 can be a positive consequence of being raised with a disabled sibling. In addition, this can influence the future career choices of the sibling; keen to use the skills they have learned in growing up with a disabled brother or sister, they seek careers in the helping professions.32 This is particularly the case with older female siblings, who, in line with gender role expectations may have had the most caregiving experience.33

The strength of feeling between the sibling and the disabled child is characteristic of the sibling relationship. While this is not markedly different to the relationships of typically developing children, studies 34,35 note that siblings of disabled children report having a warmer relationship than their non-disabled counterparts, suggesting that this is fundamentally due to their  greater appreciation for their sibling’s presence and the value of life.

Coping resources and source of support for siblings

Having a disabled child requires a family to make significant emotional and practical adjustments to their lives. The adjustment process accommodates stress and provides an important mechanism for coping.36 There is no firm evidence to suggest that siblings of disabled children suffer maladjustment but it is suggested that they are predisposed to risk in this area.37 However, a person’s ability to adjust is dependent on individual characteristics and a number of additional factors such as lack of parental attention, the poor behaviour of the disabled child and low self-esteem, which can all increase the likelihood of maladjustment.

The evidence suggests that siblings of disabled children face additional challenges to their peers and it is therefore, important that they are given appropriate support if needed. The emotional requirements of siblings can be overshadowed, both at home and by professionals38 and a sibling support group can provide a supportive shared environment for children and young people to communicate their difficulties amongst peers in a similar situation. Sharing experiences with others who understand first-hand what it is like to have a disabled sibling can be an excellent source of support.39

Conclusion

The sibling relationship in itself is infused with challenges and difficulties and this is never more apparent than when one child has a brain-related condition. However, despite being touched by disability, it appears that the bond between these children is broadly similar in tone to that of typically developing sibling relationships. Siblings experience extremes of love and protectiveness, conflict and frustration; feelings which may be heightened when one child is disabled. Growing up with a disabled brother or sister is clearly a different experience to growing up with a non-disabled sibling, but having a disabled sibling can also provide opportunities for significant personal growth. If there is adequate support in place, it is evidently possible to take positive outcomes from a difficult situation.

Useful organisations

ChildLine
A counselling service for children and young people. Providing support on a range of issues such as disability, family relationships, and bullying amongst many others.
Tel: 0800 1111 Website: www.childline.org.uk

Sibs
The UK charity supporting siblings with a brother or sister with a disability. Their aim is to enhance the lives of siblings of any age by providing them and their parents with information and support and by influencing service provision for siblings throughout the UK.
Tel: 01535 645 453  Website: www.sibs.org.uk

Relate for Parents and Families
Useful information and advice service for anyone in a family. Relate provides help and support to improve family relationships.
Helpline: 0300 100 1234  Website: www.relateforparents.org.uk

Young Minds
A UK charity working to improve the emotional well being and mental health of children and young people. Young Minds provide support for anyone concerned about the emotional or behaviour problems of a child or adolescent.
Parents helpline: 0808 802 5544 Tel: 020 7336 8446 Website: www.youngminds.org.uk

Disclaimer: Cerebra is not responsible for the content of external websites and any referral does not necessarily indicate Cerebra’s endorsement of the website content.

References

1 Seligman, M., and Darling, R.B. (2007). Ordinary Families, Special Children. (3rd ed). New York, Guilford

2 Joseph Rowntree Foundation. [online]. (2010). Children’s Understanding of their Sibling Relationship. Available from: http://www.jrf.org.uk/publications/childrens-understanding-their-sibling-relationships. Accessed 13 January 2010

3 Cerebra. [online]. (2010). Available from: http://www.cerebra.org.uk/about_us. Accessed 05 January 2010

4 Sibs. [online]. (n.d.). Available from: http://www.sibs.org.uk/. Accessed 13 January 2010

5 Dyson, L. (1989). Adjustment of Siblings of Handicapped Children: A Comparison. Journal of Pediatric Psychology. 14, 2. 215-229

6 McHale, S., and Gamble, W. (1989). Sibling Relationships of Children with Disabled and Non-disabled Brothers and Sisters. Developmental Psychology. 25, 3. 421-429

7 Longo, D., and Bond, L. (1984). Families of the Handicapped Child: Research and Practice. Family Relations. 33, 1. 57-65

8 National Information Center for Children and Youth with Disabilities. (1988). Children With Disabilities: Understanding Sibling Issues. 11. Available at: http://www.kidsource.com/NICHCY/sibling.issues.dis.all.3.1.html Accessed 26.01.10

9 Burke, P., and Montgomery, S. (2000). Siblings of children with disabilities: A pilot study. Journal of Intellectual Disabilities. 4. 227-236

10 Bandura, A. (1977). Social Learning Theory. New Jersey. General Learning Press

11 Burke, P. (2004). Brothers and Sisters of Disabled Children. London. Jessica Kingsley

12 Verté , S., Roeyers, H., and Buysse, A. (2003). Behavioural problems, social competence and self-concept in siblings of children with autism. Child: Care, Health and Development. 29, 3. 193-205

13 Seligman, M., and Darling, R.B. (2007). Ordinary Families, Special Children. (3rd ed). New York, Guilford

14 Seligman, M., and Darling, R.B. (2007). Ordinary Families, Special Children. (3rd ed). New York, Guilford

15 Philp, M., and Duckworth, D. (1982). Children with disabilities and their families: A Review of Research. Berks. NFER-Nelson

16 McHale, S., and Gamble, W. (1987). Sibling Relationships and Adjustment of Children with Disabled Brothers and Sisters. Journal of children in contemporary society. 19. 131-158

17 Hogg, M., and Vaughan, G. (2005). Social Psychology. (4th edition). Essex. Pearson Education Limited

18 Hastings, R. (2007). Longitudinal Relationships Between Sibling Behavioral Adjustment and Behavior Problems of children with Developmental Disabilities. Journal of Autism and Developmental Disorders. 37. 1485-1492

19 Seligman, M., and Darling, R.B. (2007). Ordinary Families, Special Children. (3rd ed). New York, Guilford

20 Philp, M., and Duckworth, D. (1982). Children with disabilities and their families: A Review of Research. Berks. NFER-Nelson

21 Sharpe, D., and Rossiter, L. (2002). Siblings of Children With a Chronic Illness: A Meta-Analysis. Journal of Pediatric Psychology. 27, 8. 699-710

22 Longo, D., and Bond, L. (1984). Families of the Handicapped Child: Research and Practice. Family Relations.33,1. 57-65

23 Nixon, C., and Cummings, E.M. (1999). Sibling Disability and Children’s Reactivity to Conflicts Involving Family Members. Journal of Family Psychology. 13, 2. 274-285

24 Edworthy, A. (2005). Managing Stress for Carers. Carmarthen. Cerebra

25 Department of Health. (2000). Framework for the Assessment of Children in Need and their FamiliesLondon. The Stationary Office

26 Sherman, B., and Cocozza, J. (1984). Stress in Families of the Developmentally Disabled: A Literature Review of Factors Affecting the Decision to Seek Out-of-Home Placements. Family Relations. 33, 1. 95-103

27 Pit-Ten Cate, I., and Loots, G. (2000). Experiences of siblings of children with physical disabilities: an empirical investigation. Disability and Rehabilitation. 22, 9. 399-408

28 Knott, F., Lewis, C., and Williams, T. (2007). Sibling Interaction of Children with Autism: Development Over 12 Months. Journal of Autism and Developmental Disorders. 37. 1987-1995

29 Macks. R., and Reeve, R. (2007). The Adjustment of Non-Disabled Siblings of Children with Autism. Journal of Autism and Developmental Disorders. 37. 1060-1067

30 Sherman, B., and Cocozza, J. (1984). Stress in Families of the Developmentally Disabled: A Literature Review of Factors Affecting the Decision to Seek Out-of-Home Placements. Family Relations. 33, 1. 95-103

31 Burke, P., and Montgomery, S. (2000). Siblings of children with disabilities: A pilot study. Journal of Intellectual Disabilities. 4. 227-236

32 Seligman, M. (1983). Sources of psychological disturbance among siblings of handicapped children. Personnel and Guidance Journal. 67. 344-353

33 Vadasy, P., Fewell, R., Meyer, D., and Schell, G. (1984). Siblings of Handicapped Children: A Developmental Perspective on Family Interactions. Family Relations. 33, 1. 155-167

34 Lardieri, L., Blacher, J., and Swanson, H. (2000). Sibling Relationships and Parent Stress in Families of children with and without Learning Disabilities. Learning Disability Quarterly. 23, 2. 105-116

35 Mascha, K., and Boucher, J. (2006). Preliminary investigation of a qualitative method of examining siblings’ experiences of living with a child with ASD. The British Journal of Developmental Disabilities. 52, 1, 102. 19-28

36 Burke, P. (2004). Brothers and Sisters of Disabled Children. London. Jessica Kingsley

37 Gold, N. (1993). Depression and Social Adjustment in Siblings of Boys with Autism. Journal of Autism and Developmental Disorders. 23, 1. 147-163

38 Vadasy, P., Fewell, R., Meyer, D., and Schell, G. (1984). Siblings of Handicapped Children: A Developmental Perspective on Family Interactions. Family Relations. 33, 1. 155-167

39 Burke, P. (2004). Brothers and Sisters of Disabled Children. London. Jessica Kingsley

This information is not meant to replace the advice of any physician or qualified health professional. The information provided by Cerebra is for information purposes only and is not a substitute for medical advice or treatment for any medical condition. You should promptly seek professional medical assistance if you have concerns regarding any health issue.

 

Page last updated: 22/12/2011 10:30 
 
 
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