The needs of young siblings
Research about young siblings
Our review of the research evidence on young siblings indicates that siblings of children and young people with intellectual and developmental disability overall have a slightly increased risk for problems with wellbeing and educational attainment. Siblings who are likely to have the most problems are sibling young carers and siblings whose brothers and sisters have behavioural problems.
Siblings of disabled children were almost three times more likely to have significant levels of problems in interpersonal relationships, their psychological wellbeing, school performance, or use of leisure time (as reported by parents) compared to other siblings. 245 siblings compared to 6,564 controls. Goudie et al, 2013
Young siblings’ experiences
Growing up with a brother or sister who is disabled or who has special educational needs, or a serious long term condition, has much in common with all sibling relationships – rivalry, loyalty, fairness issues, and having fun together. When one sibling is disabled these feelings may be more intense. Siblings want to have ordinary lives and to have positive relationships with their disabled brothers and sisters. They also want their disabled brothers and sisters to get the support they need so that they can have ordinary lives too.
Impact of siblings’ experiences
Siblings play a huge role in the lives of their disabled brothers and sisters – in their social lives, in supporting with their care, in advocating for them, and in helping them develop new skills. These roles can be very beneficial to siblings’ own social and personal development, however they can also come at a cost to siblings’ wellbeing and educational progress.
Positives and opportunities for siblings
The positive attributes and experiences acquired by siblings need to be acknowledged by service providers and by schools.
Learning new skills
Many siblings acquire new skills such as first aid, sign language, parenting skills, using communication aids, mediation skills. These can be a real asset for siblings for later parenting and career roles.
Social competence
Siblings may be more accepting of people who are different, developing tolerance at an earlier age than their peers. They may also be more caring towards others.
Appreciation
Siblings may appreciate their own health and abilities. They may appreciate their brother or sister’s progress and achievements and the way their parents care for their brother or sister.
Being advocates
Siblings often explain their brother or sister’s needs to carers, teachers and relatives. Many also speak up on behalf of other disabled children.
Negatives and challenges for siblings
Siblings of disabled children who are most likely to have increasing levels of problems over time are those who brothers or sisters have higher levels of behaviour problems. Hastings, 2007; Neece et al, 2010
The impact of negative sibling experiences and feelings need to be reduced through proactive interventions by service providers and schools.
Less attention from parents
Parents’ time and resources are often channelled into meeting the needs of the disabled child, leaving less time available for siblings. Due to the demands of care, parents may not get time to play with siblings, to support them with homework or to get involved in their social activities. This can lead to resentment and jealousy in siblings and have a negative impact on the parent-sibling relationship. Many parents of disabled children also have anxiety or depression which makes it harder to give siblings quality time and attention. The feeling of coming second best to another child in the family often leads to reduced wellbeing.
Isolation and social exclusion
Siblings often experience similar feelings of isolation as their parents but do not have the same access to peer and social support as adults. Many siblings feel that other people do not understand what their family life is like. Families of disabled children may not be able to take part in social and recreational activities because of public prejudice, lack of real access or support, concern about their disabled child’s behaviour in public, or because of parental exhaustion. These all mean that siblings miss out on many typical opportunities that their peers have. Siblings have been described by researcher Peter Burke as ‘being disabled by association’.
Not understanding the disability or condition
Many siblings don’t receive accurate and age appropriate information about their brother or sister’s condition. This can lead to young siblings developing their own theories about it, which may be misleading and cause distress to the sibling, for example, thinking that they caused it to happen or that it can be caught like a cold. Siblings are often asked by others at school about their brother or sister’s condition and they need to be able to explain it simply and with confidence. Siblings can feel left out of family discussions about disability or illness, and only find things out when they overhear them from other children at school. Siblings may feel it is a taboo topic at home and avoid asking questions in case they upset their parents. Siblings may take certain aspects of a condition personally, for example, thinking that their brother or sister with autism doesn’t like them when he/she doesn’t like being hugged due to sensory problems.
Coping with mixed feelings
At times siblings will have strong feelings of love, protection, pride and joy in their relationships with their disabled brothers and sisters. At other times they may feel anger, resentment, embarrassment, guilt, and sadness in the sibling relationship. For example, a sibling may feel affection towards their brother or sister and want to care for them and at the same time feel resentful if this means they are not able to play with a friend. It can be very hard for siblings to cope with the negative feelings they have if they don’t have permission to talk about these. Siblings who experience challenging situations at home, such as frequent medical emergencies, doing a lot of care, aggressive behaviour, disrupted sleep, parental depression, or bereavement may have more worry and have low mood. If not dealt with at an early stage these can lead to anxiety and depression in siblings. During the teenage years many siblings start thinking about the future and may worry about how their brother or sister will be supported if their parents can no longer do this.
Being a young carer
Siblings who are undertaking inappropriate care for a brother or sister are young carers. Siblings often do care tasks alongside parents such as supervision, feeding, personal care, help with getting to sleep, translating at appointments, assisting with therapies, and giving medication. Siblings often also support their parents emotionally, especially if parents themselves have anxiety or depression. Sibling care is a problem when it has a negative impact on siblings’ physical and emotional wellbeing and on their education. Professionals need to be aware that a sibling can become a young carer at any time during their childhood.
Dealing with challenging behaviour
Siblings of children with challenging behaviour may get hurt physically and emotionally hurt by their brother or sister. Siblings may feel frightened of their brother or sister or of their parent getting hurt. Siblings may not recognise the triggers for aggressive outbursts, may not have a plan for staying safe at home, or may be told by family and some professionals that nothing can be done about it. The lack of control, not feeling safe and thinking they have to put up with it, has a detrimental effect on sibling wellbeing.’
Over half of all young carers in the UK were caring for a brother or sister with a health or disability need. Young carers have significantly lower educational attainment at GCSE and more likely than the national average to be not in education, employment or training (NEET) between the ages of 16 and 19. Hidden from View, Children’s Society, 2013