The needs of siblings of children with life-limiting illnesses and bereaved siblings can sometimes be overlooked.  An existing program of sibling support was provided at Bear Cottage, but it was limited to single day programs.  Feedback from families clearly identified the need for additional support for siblings, and varying models of delivery for support.

The Children’s Hospital at Westmead (CHW) developed a two day Sibling Camp with the key objectives of assisting siblings to form ongoing relationships with other siblings, enjoy recreational activities without the burden of caring for their terminally ill sibling or bereaved parent/s and explore sibling issues. Feedback from children attending the camp and a survey of the parents demonstrated the overwhelming success of the program.

In 2008 to develop an effective model for providing intensive support to siblings within a caring environment, which will create a strong peer support network.

Despite a growing body of research which demonstrates both the immense lifelong and often detrimental effects of having a terminally ill sibling and the value of clinical interventions, the type of support that siblings need is not readily available.

Although there is an increasing emphasis on family-centred, community-based care, siblings remain drastically under supported. This was clearly evident from the feedback received from families about sibling support. The challenge is therefore to provide meaningful support to siblings, encouraging them to form a peer support network they can tap into at any time in a resource effective manner.

In NSW there are around 270 paediatric deaths each year from chronic illness/disease, many of the children who die have siblings.  The CHW Pain Medicine and Palliative Care Team provides services in residential settings, in the homes of patients and their families and in a homelike residential facility, Bear Cottage. When working in these settings, the needs of siblings are immediately obvious, but the support services for siblings are extremely limited. To address this, CHW commenced a program of Sibling Support Days in 2003 which were very successful. However, the single day programs did not allow sufficient time for siblings to develop meaningful relationships with their peers. In 2007, we engaged families in a survey about sibling support, which found that most families wanted additional sibling support and, in particular, those living outside of the Sydney Metropolitan area found individual days difficult to access.

Following the parent feedback received in 2007, the single day program was reviewed and thus began the process of developing a Sibling Camp. Developing the weekend program involved logistical planning around participants, age parameters, staffing and facility requirements. The content of the program and planning of recreational and group activities was developed following research by a Play Therapist and Social Worker. Further planning for the camp involved recruiting volunteers to assist with activities and supervision.

One of the most significant challenges was managing the costs involved. We were fortunate to have been able to negotiate free facilities, accommodation and catering for the pilot project through the International College of Management, Sydney. In addition, all of the recreation activities were donated through Bear Cottage’s existing network of recreation providers.

External agencies which had previously run sibling camps (for siblings of children with chronic diseases) were consulted and the Northcott Society was generous in sharing their experiences and the Intake Paperwork which they use for their camps.  Although their camps are not for siblings of children receiving palliative care or bereaved siblings, their support was most useful.

The supervising team over the weekend of the camp featured Bear Cottage volunteers, house and nursing staff, in addition to the Play Therapist and the Palliative Care Senior Social Worker. In addition, our Quality Manager assisted in preparing evaluation tools for the camp.

All of these consultations and collaborations resulted in a two day/two night sibling camp being held. The siblings of children who had received services from Bear Cottage or the Palliative Care Team at CHW were invited to attend the camp and 26 siblings aged seven to 16 years attended.

Will we be able to use these resources again for future camps?

The camp was evaluated in three ways:

• feedback from the children
• survey of parents
• debriefing session with staff.

The children were asked to participate in two feedback activities. The first was the "What's Hot/What's Not" evaluation, where the children identified things they thought were good, and things they thought were not so good.

The second activity was the "Traffic Lights" evaulation, where activities or topics were graded with red, amber and green stickers indicating not good (red), ok (amber), and really good (green).

 The parent survey was given to parents to complete in the week after the camp. Seventeen out of eighteen families replied (response rate = 94.4 %).

The debriefing session held with key camp staff involved a structured discussion to cover a range of topics, including identifying any issues to change in future camps.

The feedback has been overwhelmingly positive from each of these groups.  The aim was to provide an environment for siblings to form a peer network and both the children’s and parent feedback showed that making friends had been a highlight of the camp, providing strong evidence for the aim statement having been achieved.

Due to the overwhelming success of this innovative initiative, it is anticipated that it will become an important integral part of the Sibling Support Program at CHW and Bear Cottage. A key strategy for ensuring the continuation of this program will be the development of a staff and volunteer training manual and program, which has commenced. Also, a reunion day is being planned to allow the camp participants to reconnect and consolidate friendships with their new peer network. It is hoped that in future years it might be possible to run two camps per year to meet the needs in this vital area of support for siblings of children who are dying.

This model of Sibling Support could be easily replicated in other settings and would be a valuable intervention for groups associated with oncology, cystic fibrosis and congenital cardiac disease.

Co-ordinator, Service Improvement Unit
The Children's Hospital at Westmead
Phone: 02 9845 2093