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Siblings of Children with Special Needs
Brenda Morris Children’s Leukaemia
AssociationRuth 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 2004. 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.