What about us? Siblings of children with epilepsy

RATIONALE It is known that epilepsy has a severe impact in the quality of life of the patients; however, it affects the lives of all family members. The psychosocial repercussions of epilepsy are often of greater significance than the seizures themselves. METHODS This was a prospective study, conducted from January 2005 to December 2005 at the pediatric epilepsy clinic of our University Hospital. Parents were interviewed by one of the authors according to a structured questionnaire about the impact of epilepsy in the life of the siblings of children with epilepsy. RESULTS One hundred and twenty-seven children, siblings of 78 patients with epilepsy were evaluated. From the 127 siblings of children with epilepsy, 60 were girls and 67 were boys. Ages ranged from 5 to 18 years old (mean=11.7 years). After the diagnosis of epilepsy, the siblings had only negative feelings toward the disease, mostly sadness and fear. CONCLUSION Our data showed that the impact of epilepsy in the lives of siblings of children with epilepsy is much more severe than previously suspected.

[1]  G. Clark,et al.  Adaptation of siblings to childhood malignancy. , 1979, The Journal of pediatrics.

[2]  Deborah Buck,et al.  Quality of Life of People with Epilepsy: A European Study , 1997, Epilepsia.

[3]  B. Aldenkamp,et al.  Social Functioning, Psychological Functioning, and Quality of Life in Epilepsy , 2001, Epilepsia.

[4]  P. Hoare,et al.  Helping parents and children with epilepsy cope successfully: the outcome of a group programme for parents. , 1992, Journal of psychosomatic research.

[5]  P. Fernandes,et al.  Identificação de variáveis familiares em grupos de pais de crianças com epilepsia , 2001 .

[6]  E. Wirrell,et al.  Physical Activity in Children/Teens with Epilepsy Compared with That in Their Siblings without Epilepsy , 2006, Epilepsia.

[7]  P. Lähteenmäki,et al.  The siblings of childhood cancer patients need early support: a follow up study over the first year , 2004, Archives of Disease in Childhood.

[8]  G. Baker,et al.  The Stigma of Epilepsy: A European Perspective , 2000, Epilepsia.

[9]  P. Hoare,et al.  Psychosocial adjustment of children with chronic epilepsy and their families. , 1991, Developmental medicine and child neurology.

[10]  P. Fernandes,et al.  Identification of family variables in parents' groups of children with epilepsy. , 2001, Arquivos de neuro-psiquiatria.

[11]  E. Wirrell,et al.  Sleep disturbances in children with epilepsy compared with their nearest-aged siblings. , 2005, Developmental medicine and child neurology.

[12]  H. Caron,et al.  SIBLING SELF-REPORT, PARENTAL PROXIES, AND QUALITY OF LIFE: The Importance of Multiple Informants for Siblings of a Critically Ill Child , 2005, Pediatric hematology and oncology.

[13]  M. Grootenhuis,et al.  One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer. , 2005, Child: care, health and development.

[14]  F. Oort,et al.  Coping and family functioning predict longitudinal psychological adaptation of siblings of childhood cancer patients. , 2004, Journal of pediatric psychology.

[15]  M. M. Guerreiro,et al.  Sentimentos e reações de pais de crianças epilépticas , 1998 .

[16]  D. Pal.  Epilepsy control in the twenty-first century: hidden impact on children and families. , 2003, Child: care, health and development.

[17]  P. Camfield,et al.  Impact of Pediatric Epilepsy on the Family: A New Scale for Clinical and Research Use , 2001, Epilepsia.

[18]  E. Wirrell,et al.  Adolescents' Perception of Epilepsy Compared With Other Chronic Diseases: “Through a Teenager's Eyes” , 2006, Journal of child neurology.

[19]  E. Wirrell,et al.  Long-term psychosocial outcome in typical absence epilepsy. Sometimes a wolf in sheeps' clothing. , 1997, Archives of pediatrics & adolescent medicine.

[20]  P. Hoare,et al.  THE QUALITY OF LIFE OF CHILDREN WITH CHRONIC EPILEPSY AND THEIR FAMILIES: PRELIMINARY FINDINGS WITH A NEW ASSESSMENT MEASURE , 1995, Developmental medicine and child neurology.

[21]  J. Gaa,et al.  Impact on the family: psychosocial adjustment of siblings of children who survive serious burns. , 2003, The Journal of burn care & rehabilitation.

[22]  P. Fernandes,et al.  Kids’ perception about epilepsy , 2005, Epilepsy & Behavior.

[23]  E. Wirrell,et al.  Sleep disturbances in children with epilepsy compared with their nearest‐aged siblings , 2005 .