Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies.
Epilepsy Behav
; 112: 107377, 2020 11.
Article
en En
| MEDLINE
| ID: mdl-32846306
ABSTRACT
OBJECTIVE:
Caring for children with developmental and epileptic encephalopathies (DEEs) places substantial demands on the entire family unit, including siblings. The Sibling Voices Survey assesses parental and sibling responses to questions designed to assess how children adapt to growing up with siblings with DEE.METHODS:
Participants responded to 1 of 4 online, age- and role-specific surveys (9-12, 13-17, and ≥18-year-old [adult] siblings; parents responded with perceptions of their unaffected child's/children's feelings). Survey questions used visual analog scales, categorical responses, and free-form responses.RESULTS:
Survey submissions (nâ¯=â¯248) included 128 parents and 120 siblings (9- to 12-year-olds, nâ¯=â¯24; 13- to 17-year-olds, nâ¯=â¯17; adults, nâ¯=â¯79). All groups identified home life as the most substantially affected area of their lives (71%-84%), compared with interactions at school (21%-32%) or with friends (28%-42%). The most difficult aspect across all sibling groups was "feeling worried/scared when their sibling has seizures" (58%-70%). Feeling "overly responsible" for the sibling was reported by most adult siblings (63%), 41% of 13- to 17-year-old siblings, and 34% of parents. Siblings reported more symptoms of depressed mood (e.g., "down/unhappy," 47%-62%) than their parents perceived them feeling (25%). Most sibling groups (29%-49%) reported more symptoms of anxious mood (e.g., "nightmares/bad dreams") than parents perceived (15%). Identification of potential helpful coping mechanisms varied by age group. Most respondents (68%-76%) reported positive aspects, including greater maturity and compassion.SIGNIFICANCE:
The Sibling Voices Survey provided important insights into how DEE impacts siblings psychologically and socially. This study highlights the need for increased awareness among parents and healthcare providers to monitor siblings for potential signs of depressed or anxious mood, to provide proper support, and to decrease potential for negative long-term consequences.Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Encefalopatías
/
Trastornos Mentales
Tipo de estudio:
Diagnostic_studies
Límite:
Adolescent
/
Adult
/
Child
/
Humans
Idioma:
En
Revista:
Epilepsy Behav
Asunto de la revista:
CIENCIAS DO COMPORTAMENTO
/
NEUROLOGIA
Año:
2020
Tipo del documento:
Article
Pais de publicación:
EEUU
/
ESTADOS UNIDOS
/
ESTADOS UNIDOS DA AMERICA
/
EUA
/
UNITED STATES
/
UNITED STATES OF AMERICA
/
US
/
USA