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Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies
Laurie D Bailey1, Lauren Schwartz2, Tracy Dixon-Salazar3
1Medical and Scientific Affairs, Zogenix, Inc., Emeryville, CA, USA.
Insights
Caring for siblings with developmental and epileptic encephalopathies (DEEs) significantly impacts family life, particularly home environment and emotional well-being. Siblings often experience worry, anxiety, and depression, necessitating increased awareness and support.
Area of Science:
- Neuroscience
- Child Psychology
- Family Studies
Background:
- Developmental and Epileptic Encephalopathies (DEEs) present unique challenges for families.
- Siblings of children with DEEs often experience significant emotional and social impacts.
- Existing research has not fully captured the sibling perspective on living with DEE.
Purpose of the Study:
- To assess the adaptation of children growing up with siblings diagnosed with DEEs.
- To understand the psychological and social impact of DEE on siblings through the Sibling Voices Survey.
- To compare sibling and parental perceptions of the child's experiences.
Main Methods:
- Utilized the Sibling Voices Survey with age- and role-specific online questionnaires.
- Collected responses from 128 parents and 120 siblings (aged 9-adult).
- Employed visual analog scales, categorical, and free-form responses for data collection.
Main Results:
- Home life was the most affected area for all respondent groups (71%-84%).
- Siblings frequently reported worry about seizures (58%-70%) and feeling overly responsible (34%-63%).
- Siblings reported higher rates of depressed (47%-62%) and anxious moods (29%-49%) than parents perceived.
Conclusions:
- The Sibling Voices Survey offers critical insights into the psychosocial impact of DEE on siblings.
- Increased parental and healthcare provider awareness is crucial for monitoring sibling mental health.
- Early identification and support can mitigate potential negative long-term consequences for siblings of children with DEE.
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 (n = 248) included 128 parents and 120 siblings (9- to 12-year-olds, n = 24; 13- to 17-year-olds, n = 17; adults, n = 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.
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