Siblings of Children with Special Needs Brenda Morris Children’s Leukaemia Association Ruth Holland Mercy University Hospital

Needs of Siblings Late 1970’s: Literature looks at healthy siblings during the illness experience Needs and challenges for Siblings Strengths and Opportunities for Siblings Predictors of Sibling Outcomes:Sloper and White (1996), Cohen (1985), Heffernan and Zanelli (1996) Level of disruption in family, social and financial resources, marital conflict etc.

Siblings of Children with Leukaemia/Cancer “Because the outcome of the child’s illness is uncertain both during and after the treatment period, severe and chronic distress for all family members, including siblings, is a likely possibility” (Chesler, Allswede and Barbarin 1992)

Challenges/Issues for Siblings: a Summary Loss of attention and status Disruption in family routines/activities Separation from parents/siblings Increased expectations regarding school/family/personal responsibilities: Need to be more independent Isolation: Feeling “different” than peers. Unique social experience/challenges.

Emotional Adjustment Intense feelings, often in the absence of usual supports Fear and confusion about the illness and its meaning, jealousy, insecurity, anger, resentment, guilt, sadness

Cork Sibs 2003: Needs of siblings associated with the Oncology and Haematology units at the Mercy University Hospital, Cork and the Children’s Leukaemia Unit at MUH were being recognised by staff on the Unit, the LU Social Worker, parents and the Children’s Leukaemia Association

Group Programme Funded by the CLA, and in collaboration with the Mercy University Hospital, the first Sibings programme “Our Place” was offered in April Siblings aged 11 to 13 years. This was followed in October (2004) by a second group “Saturday Sibs” for siblings aged 7-11 years

Combination Programme Most recent group occurred in December 2004 Combined young teenage siblings with patients Teens aged 12 to 15 years.

Objectives Design and provide a supportive siblings group intervention programme based on the well-known “Sibshop” model (Meyer and Vadasy: Sibling Support Project, Children’s Hospital and Medical Center, Seattle, Washington) Programme to be informed by current literature in area of siblings’ interventions in paediatric oncology internationally.

Objectives (continued) Ongoing evaluation and adaptation of the programme to respond to the unique needs of this population, in this particular social and cultural context.

Finding Child-Friendly Space

Designing the Programme Provide a fun, safe and meaningful place to be for the children Assess and address the information needs of the children vis-à-vis the illness Create opportunities for mutual support around feelings and experiences Increase the profile of Siblings issues amongst families and professionals Create opportunities for problem-solving Counteract isolation by building “community” of families and children

Two Different Structures Weekly: Tuesday evenings, 6 pm to 7:30 pm Five weeks Parent sessions before and after the programme Located on grounds of hospital, allowing for ready access to the ward, and to staff

Saturdays: 2 or 3 Saturdays from 11am to 3pm (younger siblings) or from 3pm to 8pm (teenagers) Child-friendly location that facilitated easy transportation and child-friendly activities (outdoors and indoors) Scheduling and location made hospital visits and staff involvement more difficult

Programme Components Ice breakers and fun, recreational activities Allow the children to meet around developmentally appropriate tasks and activities and enjoy being together in a relaxed setting.

Therapeutic Component Fun and focused activities aimed at stimulating discussion of shared life experiences relating to having a brother or sister with Leukemia/Cancer. Break isolation, allow for problem- solving, explore resources, in the context of a group of children who “know” what it is like.