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Not being the only one

The most frequent feedback we hear from siblings after they come to a sibling group, workshop or session is: ‘I am not the only one who has a brother or sister like mine’. Feeling isolated and that others don’t understand is very prevalent for siblings. We would never expect parents of disabled children to to go for years without ever talking to others parents who understand their situation and yet most siblings never get to talk to another adult sibling about their experiences until they are adults.

“It is evident that attending a siblings group is of benefit to the siblings involved because siblings are, perhaps for the first time, in a group where they are not different from others …siblings gain a voice by attending a group, which enables them to be honest about themselves, to express their fears, anxieties and wishes for the future with other young people who understand.” Peter Burke, Siblings of Disabled Children, 2004

Having strategies for a lifetime

The sibling relationship is often the longest lasting relationship that people have, longer than the relationship that parents have with their children. Siblings of disabled children need strategies for coping when they are children and that they can also use when they become adults and take on care and support roles for their brothers and sisters.

Being valued in your own right

Siblings’ needs often come second to those of their disabled brother or sister, due to the demands of care on parents and the limited support available for many families of disabled children. Sibling groups give the message to siblings: ‘This is something that is just for you, your needs matter too.’ Siblings can be acknowledged in their own right as children and young people and also for the role they play in their families, something which is often overlooked by schools and service providers.

Building resilience through discussion activities

Young siblings need a break from home and to have fun to improve their wellbeing. So groups that provide outings and recreational activities will help siblings improve their wellbeing in the short term. But what those groups won’t do is help siblings build resilience.

Wellbeing is physical, social and emotional good health that leads to a positive outlook and feelings of happiness.

Groups that include discussion activities as well as fun activities help siblings become more resilient in the longer term as well as improving their wellbeing in the short term.

Resilience is being able to manage difficulties and recover from challenging circumstances. 

Children and young people become resilient through:

  • Making sense of their experiences
  • Having a sense of control in difficult situations
  • Having connectedness with their peers & supportive adults
  • Having strategies for regulating their emotions

The Sibs F.R.A.M.E model

Sibs has developed F.R.A.M.E. to describe the aims and outcomes for a sibling group that will help build resilience in siblings of disabled children. Practitioners and volunteers across the UK have been using this framework for their sibling groups over the past ten years.

Here are the F.R.A.M.E. group aims and outcomes.

Fun

Siblings have an opportunity to make friends and enjoy themselves. They are able to do activities that may be difficult to do at home, for example arts and crafts or playing games together. They have a break, free from the responsibilities of their home life.

Key outcome to measure – Has this sibling had fun and a break at the sibling group?

Relieve isolation

Siblings meet other siblings facing similar situations and make friends with other children and young people they can stay in touch with. They are able to be the focus of attention and talk to group leaders who are experienced about sibling issues.

Key outcome to measure – Is this sibling feeling less isolated since coming to the sibling group?

Acknowledge feelings

Siblings are able to discuss and value the unique feelings and experiences of being a sibling and to have their feelings acknowledged. They learn to identify and name feelings. They explore the experiences and mixed emotions that many siblings feel about their brother or sister in a supportive setting.

Key outcome to measure – Is this sibling better able to express a range of feelings?

Model coping strategies

Siblings learn and practice strategies to help them to manage difficult situations. They identify the people who can support them at home, at school and in their community. They are acknowledged for the important role they have within their family.

Key outcome to measure – Is this sibling more able to cope with difficult situations?

Enhance knowledge

Siblings learn about their brother or sister’s condition or disability. They have an opportunity to ask questions and have them answered. They are given age appropriate and accurate information about their specific conditions.

Key outcome to measure – Does this sibling understand their brother or sister’s condition or disability better?

Benefits of attending a sibling group

Sibling group evaluations have shown the following outcomes for siblings attending sessions for 8-10 weeks.

  1. Improved wellbeing
  2. Improved relationships with their disabled brothers and sisters
  3. Improved behaviour at home and school
  4. Increased communication with their parents about worries and about disability
  5. Improved concentration and performance at school
  6. Using skills to help themselves and other siblings at difficult times
  7. Increased attendance at mainstream clubs and groups
  8. Being able to speak up about bullying
  9. Increased understanding about disability
  10. Increased social time with peer group