Could you imagine what it would feel like being the sibling of a very ill brother or sister?

How would you feel? How would you cope? What impact would this have on you?

When a child has a complex or long term condition, or indeed both, it is inevitably distressing for the parents but can be equally so for a sibling. CUH is a large provider of paediatric services in the region and we felt there was more we could do to help these siblings whose psychological needs may be unintentionally overlooked.

Issues

There is evidence that siblings are significantly emotionally impacted by having a sibling whose life is at risk, with siblings of patients receiving cancer treatment suffering from symptoms of post traumatic stress disorder

Separation from parents for significant amount of time or on a frequent basis due to hospital admissions, complex treatment regimes and appointments
Limited attention from parents as the focus is on the sick child
Key medical specialities you might find them associated with include; Oncology, Neurology, Epilepsy Gastroenterology, Intensive Care (PICU/NICU), Cystic Fibrosis, Cardiology, Transplant, Medically Unexplained Symptoms.

Impact on these children

Changes in mood – e.g. become withdrawn
Changes in eating and sleeping
Regressing (return to common behaviours from when they were younger)
Have difficulty in school
Worrying that the same thing will happen to them
Possible feelings of guilt
Strong negative feelings such as resentment, anger, jealousy, which they cannot express
Worry and uncertainty about the future
Feelings of loss for the family they had before their sibling became unwell
Feelings of isolation and feeling different from their peers

Evidence suggests that young siblings who have a brother or sister in NICU or PICU have strong emotions and feelings in response to their usual routine being changed and to the stimuli in the hospital setting. One child expressed how the tooth fairy had not been, even though they had left a tooth under their pillow, an event important for the child and missed by the parents. Older siblings assume responsibility for their sibling’s health and wellbeing and feel the pressure not to burden their parents with their own feelings or troubles. This can lead to them feeling very distressed and isolated. It can also lead to them feeling angry or resentful but unable to express this as they don’t want to add to their parents’ burden. Getting siblings together in a group to share these feelings and experiences and to talk about their feeling of difference can reduce the isolation they feel, relieve them of the built up emotions and help them to understand and feel compassion for themselves. Given the way most services are commissioned, there is rarely scope to run siblings groups in the clinical working day. In addition, given the small number of siblings of children within each medical speciality and the range of ages, there are not often enough children of the same age in each speciality with a need for a group at the same time. Running siblings groups for different age bands across specialities would be a highly useful and cost effective use of resource.

 

Proposal

Our proposal is to implement a healthcare intervention that aims to promote a family-centred model of care. We intend to run age appropriate peer group sessions for siblings of children who are / or have been a patient with either a complex or long term condition.

We will create age appropriate peer group sessions, and the purpose will be to provide support in a safe environment, share and learn from other siblings experiences, and provide a range of activities that will promote positive mental wellbeing. The group sessions will be facilitated by a psychologist and play specialist.

It is well known that play forms an essential part of a child’s development and allows them to communicate and express feelings or thoughts in a creative way.

The groups will be categorised into the following age ranges; 5-8, 9-11 and 12-16, however the peer groups will evolve over time and older children may wish to mix with and support younger children in subsequent groups.

For younger children, below 5, hand decorated boxes (possibly by parents) could be given to each child, with activities, colouring books, small games and a cuddly toy inside. These could be provided to older children too which could include messages of love and support from their parents or positive affirmations on a postcard.

The children / young people will help shape the format of the group from its concept and throughout to ensure their needs are best met.

At the end of the project, a number of group programmes will have been put together and trialled and the necessary equipment sourced, so that subsequently clinicians can run a group ‘off the shelf’.

Our concept builds on limited evidence base, which is why we felt peer support for this group was so important.

Benefits / Outcomes

There are significant benefits of peer support for children and young people:

Improved confidence and self esteem
Reduced anxiety and feelings of sadness
Realise they are not alone
Learn coping / resilience techniques
Mutual benefit

The creation of this peer group support would enable a multi organisational and multi-disciplinary approach with staff from Cambridge and Peterborough Foundation Trust and Cambridge University Hospital Trust.

There are benefits to the wider healthcare system long term (albeit challenging to quantify) supporting children and young people’s emotions and providing support at an early stage can prevent more complex  problems from occurring later in childhood.

Parents may appreciate the support offered as they may have feelings of guilt when the focus is more on the ill child than the well child.

We will measure the benefits through surveys, patient stories, art and play work.

Benefits for the Q community

This concept could be adopted and replicated at other Trusts providing children’s health services, and we will share the outcomes with the Q community online, and at suitable events. We would create an article for publishing and would share tools and relevant information to support other organisations in setting up their own sibling peer support groups.