|Ahead of print
Psychosocial and emotional consequences in siblings of children with epilepsy
Ekta Agrawal1, Manjiri C Datar2, Kavita Srivastava1, Surekha B Rajadhyaksha1
1 Pediatric Neurology Unit, Department of Pediatrics, Bharati Vidyapeeth (Deemed to be University) Medical College, Pune, Maharashtra, India
2 Department of Psychiatry, Bharati Vidyapeeth (Deemed to be University) Medical College, Pune, Maharashtra, India
|Date of Submission||25-Jun-2021|
|Date of Decision||26-Dec-2021|
|Date of Acceptance||03-Dec-2021|
|Date of Web Publication||12-Jul-2022|
Pediatric Neurology Unit, Department of Pediatrics, Bharati Vidyapeeth (Deemed to be University) Medical College, Pune 411043, Maharashtra
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Background: Chronic illness such as epilepsy in children tends to affect the entire family. Siblings of these children, who are usually in the same age group cohort, may have various psychological consequences. Data are sparse on the psychological state of siblings who share the same family environment as the child suffering from epilepsy. Aim: To explore the emotional impact and psychosocial domains of siblings of children suffering from epilepsy. Materials and Methods: This was a qualitative study. The siblings of the children with epilepsy were interviewed with the help of a semistructured questionnaire exploring the domains of their perceived severity of the sibling’s epilepsy, their psychological reactions, their perception of parental behavior, family environment, and social life. Their narratives were transcribed into themes. The psychological reactions of the children were analyzed for correlation with sociodemographic factors, epilepsy characteristics, and the themes generated from other domains. Results: Overall, 80.48% children reported a feeling of anxiety, 60.97% reported parental negligence, 63.41% perceived high expectations from them by parents, and 31.7% perceived a disturbed family environment. The psychological reaction of anxiety correlated significantly with the perceived severity of illness (P = 0.005), whereas loneliness correlated with perceived harsh and punitive parenting (P = 0.003), a disturbed family environment (P = 0.024), and lack of recreation (P = 0.047). Conclusion: Children with siblings suffering from epilepsy have various psychological effects that are influenced by their perception of parental behavior and family environment.
Keywords: Epilepsy, family, parental, psychosocial effects, siblings
| Introduction|| |
Epilepsy in children is usually a chronic illness and is seen to affect not only the individual but also the entire family as a support system. From a primarily patient-centered approach to more family-oriented holistic care, modern medicine aims at supporting the family of the patients as well. The parents and immediate caregivers are readily identified as the unit to be cared for, whereas the siblings often are the missed targets of the same wanting support and care., Added to this, the negative perception of children and stigma attached to epilepsy leaves little space for open discussion about the condition or expression of one’s concerns.,
The social stigma, economic burden, and feeling of grief and often guilt plunder the well-being of parents and caregivers of children with epilepsy. Their quality of life is affected by the degree of seizure control and the overall well-being and productivity of their child., However, siblings of such children are not left unaffected. They also suffer the stress that their parents and siblings undergo.
The situation in our country is further complicated owing to several factors, including family structure, scarcity of adequate treatment facilities, education and attitude of the parents, gender bias, social stigma, and a lack of social support groups., Often, these siblings have unmet emotional needs and psychological issues that can adversely affect their functioning and adjustment with family and society. Although there have been multiple studies to evaluate the quality of life of parents of such children,,, there are very limited studies on the impact on the siblings of children with epilepsy., This study was undertaken to assess the psychosocial and emotional consequences in siblings of children with epilepsy.
| Materials and Methods|| |
This was a cross-sectional exploratory qualitative study. It was a phenomenology type study based on Polit and Beck model.
Study setting and participants:
The study was done in the Pediatric Neurology outpatient department of our tertiary care hospital. The parents were encouraged to get the siblings of the child during their visit to the hospital. These siblings were interviewed about their psychological state. (Siblings will be referred to as “children,” and patients with epilepsy will be referred to as “siblings” in further discussion in this article)
Children between 8 and 18 years of age were included in the study. Those with any medical/ surgical/ psychiatric disorder or mental subnormality were excluded from the study.
The study was approved by the institutional ethics committee before the initiation of the study.
The participants were explained about the nature of the study, and informed consent from parents and assent were taken from all participants before the initiation of data collection. They were allowed to suspend or withdraw from the interview if they were uncomfortable or it was negatively affecting their emotional state.
Sampling strategy and sample size:
Convenience sampling strategy was used. Overall, 41 children were interviewed and sample collection was stopped on data saturation when no additional themes were generated.
The first author conducted the interviews with the help of a semistructured interview guide. The child was made comfortable and interviewed only once in a confidential and nondisturbing environment. The interview questions were designed to explore the narratives in the following domains: (1) perception of the child about the sibling’s illness, (2) psychological reactions toward the sibling’s illness, (3) perceived parental behavior by the child, (4) the child’s perception about the family environment, and (5) the child’s perception of interpersonal and social relations.
The questions asked to evaluate responses from each domain were as follows:
- 1) Perception of the sibling’s illness/epilepsy
How do you perceive the illness of your sibling?’ What happens to him/ her during illness? In what way is he/she affected?
- 2) Psychological reactions of the child
How do you feel about your sibling’s illness? How do you feel when the sibling has to stay in hospital? How is your behavior with your sibling?
- 3) Perceived parental behavior by the child
How do parents behave with you and your sibling? How is your relationship with your parents after the diagnosis of epilepsy in your sibling?
- 4) Child’s perception about the family environment
How is the family environment in general after the diagnosis of epilepsy in your sibling? How is the recreation in your family?
- 5) Child’s perception of interpersonal and social relations
How are your social relations after the diagnosis of epilepsy in your sibling? How are your relations with your friends? How is your schooling and routine?
The narratives of the children in response to these questions in the domains were transcribed. The transcribed narratives were analyzed, and common themes were generated with consensus from all authors. The format of thematic analysis of the transcript was followed. Initially, data familiarization was done; themes from the narratives were derived and reviewed. Data triangulation with interpretation individually and then in group by all authors till common themes were generated., The themes were then coded for analysis.
All statistical analysis was done by using SPSS software with version 25.0. Continuous variable results were shown by descriptive statistics. Qualitative variable results were shown by frequency and percentages. Chi-square test/ Fisher-exact test was done for associations between sociodemographic variables, psychological reactions of the child, perceived parental behavior, family environment, and social life. All results were shown with 95% confidence. Overall, 5% level of significance was used and a value of P < 0.05 was considered as significant.
| Results|| |
Totally 41 children who accompanied their sibling with epilepsy were interviewed. [Table 1] depicts the sociodemographic profile of children and the epilepsy characteristics of the siblings. The mean age of children interviewed was 12.66 years with a standard deviation of 2.74.
|Table 1: Sociodemographic data of the children who were interviewed and characteristics of epilepsy in the siblings|
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The responses of children to individual questions were assessed. In response to their perception about their sibling’s epilepsy, 24 (58.53%) children felt it to be some kind of severe illness; 11 (26.82%) children even feared that their sibling could die during a seizure. A nine-year-old girl said, “I feel that my brother is very ill, so he has to go to the hospital. He can die anytime.” Six (15%) children perceived their sibling’s illness as odd or weird.
The psychological reaction of the children toward their sibling’s condition is depicted in [Figure 1]. Overall, 33 (80.48%) children were anxious and worried about their siblings’ health and were scared when they would witness a seizure episode. An 11-year-old brother expressed, “I am very fearful when I see my sister in a fit. I am tensed and wonder if she will ever be normal.” Twelve (29.26%) children were feeling “shame” to reveal about their sibling’s condition to their friends or known people. A 17-year-old boy confessed, “I have not told any of my friends about my sister’s fits, because they will laugh at me.” Seven (17.07%) children reported a feeling of loneliness, unable to share their feelings with someone, as their parents were busy attending to the sibling. This feeling was prominent when the sibling had to be hospitalized and they were left alone at home with some caretaker.
Nineteen (46.34%) children became overprotective and took extra care of the affected sibling. They also avoided provoking them and always tried to be good to them. A 16-year-old elder sister to a five-year-old with epilepsy explained, “I fulfill all her demands. I am afraid that if I say ‘No’ for anything and if she cries or gets angry she will get a fit.” Three (7.3%) children expressed anger and irritation toward the sibling or their family members and friends.
Perception of the children about their parents’ behavior was probed. Overall, 25 (60.97%) children felt neglected by their parents who gave extra attention toward the affected sibling. They also reported that parents did not attend to their routine activities, including academics and recreation. A boy even wanted to get sick in order to get his parents’ attention. Eleven (26.82%) children sensed that their parents are overprotective toward them. Their parents get worried about even their minor health issues or for the slightest delay in returning home. Rarely, three (7.32%) children reported their parents being harsh or punitive toward them even for petty mistakes and one child wished he was born in another family. Overall, 26 (63.41%) children reported that their parents have high expectations from them, in terms of either academic achievements or fulfilling household obligations.
When enquired about their family environment, 13 (31.7%) children perceived their family environment as disturbed. Children reported altercations between family members, lack of communication between each other, or a general feeling of stress in the family. Ten (24.39%) children felt the lack of family recreation such as family outings, vacations, or pleasurable activities carried out together. Eight (19.51%) children perceived disturbed relations with peers or neighbors with whom they could not have comfortable communication.
The psychological reactions of children were uniform across all age groups and either gender. There was no correlation between psychological reactions and the birth order of the child relative to the affected sibling. The clinical variables of the sibling with epilepsy, including the duration of epilepsy, behavior disturbances, or associated developmental delay, did not cause any significant difference in psychological reactions in the children interviewed. Similarly, family type did not significantly impact their psychological reactions [Table 2]. There was no significant correlation between these parameters (age, gender, family type, and clinical characteristics) and perceived parental behaviors, family environment, or social life [Table 3].
|Table 2: Correlation of sociodemographic and sibling epilepsy characteristics with psychological reactions in children|
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|Table 3: Correlation of sociodemographic and sibling epilepsy characteristics with perceived parental behavior, family environment, and social life|
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It was found that children who perceived the illness to be severe had significant anxiety. The children, who felt their parents to be harsh or punitive, had a significant feeling of shame about their sibling’s illness and also felt lonely. Loneliness was also significantly felt by children who reported a loss of recreation in their family and a disturbed family environment. The children who were overprotective of their sibling also perceived their family environment to be significantly disturbed [Table 4].
|Table 4: Correlation of psychological reactions of children to perceived parental behavior, family environment, and social life.|
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| Discussion|| |
Family forms the smallest unit of a community and the backbone of each individual’s support system. Chronic illnesses such as epilepsy have a significant psychological impact on family members, including parents and siblings. However, the need for any intervention for siblings is underestimated.,,
The majority (80.48%) children felt anxious and tensed about their sibling’s illness. In a similar study on the siblings of children with epilepsy, Hames and Appleton also reported fear and anxiety among the siblings about what would happen to their brother or sister in a seizure, or what they would do if they were in the house alone with them. In their study on siblings of children with chronic illnesses, Houtzager et al. detected more cognitive and especially more emotional problems among them than their peers. This feeling of anxiety was irrespective of their sociodemographic profile and clinical characteristics of the sibling’s condition, which emphasizes the uniformity of their mental anguish.
Overall, 29.26% children had a feeling of shame to discuss about their sibling’s illness as they felt it would invite ridicule. This highlights the stigma attached to epilepsy in the society as well as the view transferred from the parents to their children. Tsuchie et.al also emphasized the negative perception toward epilepsy as well as the severe impact on the lives of these children.
Parental neglect was a common theme reported by 60.97% children in our study. Parents involved in the care of a child with chronic illness often overlook the needs of their so-called “normal” children who are overwhelmed with the burden of responsibility toward the affected child.,, Freeman et al. reported that parental neglect toward healthy children is common and may lead to difficulty in adaptation in the healthy child and may also exacerbate the feelings of sibling rivalry.
Disturbances in the family environment were reported by 31.7% children. A chronic illness with unpredictable characteristics such as epilepsy puts a family at risk for poor communication, poor cohesiveness, and poor integration. A strained relationship with the parents and limited participation in family or social activities ultimately may lead to disappointment in a healthy child., In our study, it also led to children feeling lonely and becoming overprotective toward their sibling. Loneliness has been reported among siblings of children with other chronic illness as well mainly due to a lack of support and understanding.,
In our study, we found that sociodemographic variables such as age, gender, and birth order did not influence the psychological reactions of the children. Alferder et al., however, reported that female children tend to be more distressed about their sibling’s illness. Although elder children were more likely to be protective toward their sibling, this was not statistically significant. Also, the clinical characteristics of the child with epilepsy such as control of seizure, developmental delay, and behavior issues did not have any statistically significant impact on the psychological reactions of the healthy child. More children reported a disturbed family environment if the duration of epilepsy was more than two years, but this was not statistically significant.
The psychological reactions of the children were, however, influenced by their perception of parental behavior toward them as well as their perception about their family and the social environment. Other studies have similarly reiterated the fact that parental attitude and behavior are critical for a child’s psychological well-being., Chronic illnesses are known to change the family dynamics, which definitely take a psychological toll on a healthy child. An undisturbed family environment with adequate parental support is of paramount importance for the emotional well-being and to alleviate distress. A well-adjusted family of a chronically ill child is possible with a supportive social network, appropriate balancing of needs and demands of all family members, and active coping and encouragement of growth within the family. Effective communication between the parents and children will foster better care and acceptance of the situation. Anxiety and loneliness can lead to multiple major psychological sequelae in children that need to be addressed on time.
Strengths of the study:
Detailed subjective narratives to determine the psychological state of the child along with domains of parental and family environmental perceptions of the child were conducted, leading to a broad understanding of the psychosocial aspects of epilepsy with effect on siblings.
No objective screening instruments or diagnostic tools were used; hence, no formal diagnosis of their psychological condition was done.
| Conclusion|| |
There are various psychological consequences in children with a sibling suffering from epilepsy that do not correlate with their sociodemographic profile or the epilepsy characteristic of the sibling, but are significantly influenced by their perception of parental behavior and family environment.
When a child is diagnosed with epilepsy, it is important to provide psychological help for adaptive parenting techniques and to maintain a conducive family environment so that the negative psychological effects on healthy siblings can be minimized. Support groups of similar parents can be made for better interaction and help.
Also, necessary information about epilepsy and management can reduce the stigma associated with epilepsy, to help them cope better.
Areas of future research:
It needs to be explored whether family-oriented psychosocial interventions lead to an improvement in the mental health parameters of the siblings of children suffering from epilepsy.
The authors thank Mrs. Pallavi Inamdar, clinical psychologist at Dinanath Mangeshkar hospital, Pune for her guidance in framing the probing questions. They acknowledge the help of Mr. Rupesh Deshmukh, their biostatistician for statistical analysis.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4]