The impact of chronic epilepsy on the family

doi:10.1016/1059-1311(92)90054-5

Seizure

Volume 1, Issue 1, March 1992, Pages 43-48

https://doi.org/10.1016/1059-1311(92)90054-5 Get rights and content

Abstract

The emotional impact of intractable epilepsy on family members is a neglected topic, with the majority of studies confined to childhood epilepsy. Our clinical experience suggests that family members, particularly parents, may at times be under considerable emotional strain, especially when seizures are frequent and accompanied by injury. The purpose of this study was to explore the psychological and physical well-being, satisfaction with social circumstances and perceived level of support in families with an adult member with intractable epilepsy. Forty-four families were administered rating scales of mood and answered questions relating to their social situation and physical health. Levels of stress and dissatisfaction with their social situation was high, particularly in primary carers (the mother in most instances). Respite periods away from their caring role were few and the perceived level of support was low. Poor emotional adjustment was associated with severity of tonic and atonic seizures and episodes of status. Additionally, perceived low levels of support were associated with depression.

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Neighborhood disadvantage and health-related quality of life in pediatric epilepsy
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While several demographic and epilepsy-specific characteristics are associated with diminished HRQoL in children and adolescents with epilepsy, prior investigations have failed to incorporate and address the influence of broader social contextual factors on functional outcomes. To address this gap, the purpose of the current study was to investigate the role of neighborhood disadvantage on HRQoL, including the extent to which familial and seizure-specific risk factors are impacted.
Data included parental ratings on the Quality of Life in Childhood Epilepsy (QOLCE) questionnaire for 135 children and adolescents with epilepsy, and the Area Deprivation Index (ADI) to measure neighborhood disadvantage. Bivariate correlations were conducted to identify significant associations with neighborhood disadvantage, followed by a three-stage hierarchical multiple regression to predict HRQoL. Follow-up binary logistic regressions were used to determine the risk conferred by neighborhood disadvantage on sociodemographic, seizure-specific, and HRQoL factors.
Moderate associations between neighborhood disadvantage and familial factors, including parental psychiatric history and Medicaid insurance, were identified, while disadvantage and greater seizure frequency were marginally associated. Neighborhood disadvantage independently predicted HRQoL, and was the sole significant predictor of HRQoL when familial factors were incorporated. Children with epilepsy living in disadvantaged areas were four times more likely to have diminished HRQoL, five times more likely to live with a parent with a significant psychiatric history, and four times more likely to reside with a family receiving Medicaid insurance.
These results highlight the importance of identifying high-risk groups, as the cumulative burden of social context, familial factors, and seizure-specific characteristics contribute to lower HRQoL in pediatric epilepsy which disproportionately affects patients from lower-resourced backgrounds. Potentially modifiable factors such as parental psychiatric status exist within the child’s environment, emphasizing the importance of a whole-child approach to patient care. Further exploration of disadvantage in this population is needed to better understand these relationships over time.
Do people with epilepsy want to participate in an exercise intervention randomized controlled trial? – Results of a brief survey and its preliminary application
2023, Epilepsy and Behavior Reports
Our goal was to survey people with epilepsy (PWE) about their interest in and factors that may influence willingness and ability to participate in an exercise randomized controlled trial (RCT). A brief survey was administered to 100 PWE asking if they would take part in a hypothetical 6-week exercise intervention RCT. Follow-up questions queried reasons for and against participation and why participation would be difficult. Sixty-nine percent of respondents indicated willingness to participate. The top reason for participation was “to improve overall health with exercise” (n = 49). The top reason for why participation would be difficult was they “do not have a reliable source of transportation” (n = 27). The top reason for not participating was “not interested in research participation” (n = 19). Preliminary results were used to budget for transportation in a prospective RCT (NCT04959019). Of the first 27 PWE enrolled (63 % female; 44 % African American/Black), six (50 % female; 50 % African American/Black) have used the transportation service. The majority of PWE surveyed were interested in participating in an exercise RCT, but some indicated barriers. Accommodating transportation in an ongoing RCT has facilitated recruitment of PWE who would otherwise not be able to participate. Barriers to participation should be accounted for when designing studies.
Lived experiences, perceived positive outcomes, and post-traumatic growth among parents with children with epilepsy: A qualitative study
2022, Epilepsy and Behavior
Citation Excerpt :
Similarly, in the existing literature, studies showed that parents with CAWE experience higher levels of chronic stress [3] compared to families whose children have not been diagnosed with epilepsy [19]. Parental stress was highly associated with increased frequency of seizures [19,20] and controlled seizures [21]. Mothers in our sample underlined their high perceived stress when their children experience drug-resistant epilepsy and their seizures cannot be controlled.
Childhood-onset epilepsy alters the everyday life of parents who have children or adolescents with epilepsy (CAWE). The aim of this qualitative study was to explore the experiences of Greek parents with CAWE, including perceived positive outcomes in their lives, where research in this area is limited. Fifteen parents took part in semi-structured interviews which were conducted online due to the social distancing measures imposed by the COVID-19 pandemic. Main results showed that parents with CAWE experience stress, somatic symptoms, mood swings, fear along with feelings of anger, and a sense of injustice. Positive outcomes were identified at a personal level, in parenting skills, and in achieving family cohesion. Parents reported that they had achieved increased personal strength, new perspectives, better life appreciation, and changes in their spiritual beliefs. Moreover, they mentioned the acquisition of new parenting skills which helped them become better caregivers as well as feeling more united with other family members. The changes that parents identified are discussed in relation to aspects of the Post-Traumatic Growth construct, and future recommendations and implications for practice are proposed.
Enhancing the wellness of caregivers of individuals with epilepsy: The effects of a brief stress management course
2022, Epilepsy and Behavior
To determine whether a brief stress management video can improve the quality of life of caregivers of persons with epilepsy (PWE).
Thirty-three adult caregivers of PWE who scored 5 or higher on the Caregiver Self-Assessment Questionnaire (CSAQ) completed a 30-min stress management video. This was preceded by a pre-intervention assessment, followed by post-intervention assessment at 1 month, and a delayed post-intervention assessment evaluation 3 months after video was viewed. Measures of program acceptability were also obtained.
There was significant improvement when comparing pre- and post-intervention CSAQ scores. This improvement was sustained at 3 months post intervention. Measures of program acceptability were favorable.
A brief stress management course can help improve the quality of life of caregivers of PWE.
Impact of developmental and epileptic encephalopathies on caregivers: A literature review
2021, Epilepsy and Behavior
Developmental and epileptic encephalopathies (DEEs) are rare neurodevelopmental disorders characterized by early-onset seizures and numerous comorbidities. Due to the complex requirements for the care of a child with a DEE, these disorders would be expected to impact health-related quality of life (HRQL) for caregivers as well as for patients. The objective of this literature review was to describe the impact of DEEs on the HRQL, emotional wellbeing, and usual activities (social, work, relationships, etc.) of caregivers, including the wider impact on other family members such as siblings.
A literature search was conducted in May 2020 using MEDLINE® and Embase® databases. Quantitative and qualitative studies were identified using search terms related to family, disease type (including >20 specific DEEs), and quality of life/methodology. Each study was assessed for relevance and was graded using customized critical appraisal criteria. Findings from studies that were given the highest quality ratings were summarized and used to develop a conceptual model to illustrate the complex impact of DEEs on caregiver HRQL.
Sixty-seven relevant studies were identified, of which 39 (27 quantitative, 12 qualitative) met the highest appraisal criteria. The studies recruited caregivers of patients with one of eight individual DEEs, or pediatric intractable or refractory epilepsy. Most studies reported negative impacts on HRQL and emotional wellbeing in caregivers. The wide-ranging impact of a DEE was highlighted by reports of negative effects on caregivers’ physical health, daily activities, relationships, social activities, leisure time, work, and productivity. Factors that influenced the perceived impact included demographic characteristics (e.g., child’s age, living arrangements, family income) and clinical factors (e.g., feeding or sleep difficulties, disease severity). Few studies evaluated the impact on siblings.
There is evidence that DEEs can impact HRQL and emotional wellbeing and can limit usual activities for the primary caregiver and their wider family. However, no research was identified regarding many individual DEEs, and only limited research assessed the impact on different family members with most studies focusing on mothers. Further research is required to understand the influence of certain factors such as the age of the patient, disease severity, and seizures on caregiver burden. Furthermore, the review highlighted the lack of appropriate measurement tools to assess caregiver HRQL in this population.
A comparative study of perceived burden in parent caregivers of adolescents with epilepsy in a resource-restricted setting: Investigating the explanatory factors of perceived burden
2021, Epilepsy and Behavior
Parent caregivers often play vital roles in the care of adolescents with epilepsy (AWE) in resource-restricted settings; however, little is known about the burden borne by these parents. This study investigated the burden perceived by parents of AWE and described the explanatory factors.
An equal number (n = 121) of age- and gender-matched parent caregivers of AWE (cases) and parents of adolescents with sickle cell disease (comparison group) were interviewed with the Parent Illness Intrusiveness Rating Scale to assess disruptions in their relationships and lifestyle. Parents of AWE were assessed for psychological distress with the 12-item General Health Questionnaire, and AWE were interviewed with the Hospital Depression-Anxiety Scale.
The majority of the cases and the comparison group were mothers (76%), with mean (SD) ages of 44.11 (SD = 6.92) versus 43.59 (SD = 6.39) years, respectively. The prevalence rate of psychological distress in cases was 38%, and depressive-anxiety symptom was prevalent in 39.7% of AWE. The level of perceived burden was significant in all parent caregivers, albeit higher in cases relative to the comparison group across multiple domains, including relationship/personal development, intimacy, instrumental and global. A high level of burden in parents of AWE was predicted by a poor family financial and material support to the adolescents, increased contact hours with adolescents, psychological distress in the parent caregivers, and anxiety-depressive symptoms in AWE after controlling for cofounders.
The study findings underscore the need for psychosocial support to bolster resilience and adaptive coping styles in parents of AWE, particularly in resource-restricted settings. A culturally sensitive interdisciplinary blueprint of locally viable actions model for psychosocial support for parent caregivers of AWE is strongly suggested. Future studies are indicated to shed more light on the modifiable risks of perceived burden, and the effectiveness of psychosocial interventions in parents of AWE.

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Original articleThe impact of chronic epilepsy on the family

Abstract

Journal of Epilepsy

Journal of Psychosomatic Research

Psychosocial dimension of epilepsy: A review of the literature

Epilepsia

Socioeconomic accompaniments of severe epilepsy

Epilepsia

Neurobiological, psychosocial and pharmacological factors underlying interictal psychopathology in epilepsy

The Social Psychology of the Child with Epilepsy

The family and the child with epilepsy

Family Process

Psychiatric disturbance in the families of epileptic children

Developmental Medicine and Child Neurology

Epilepsy and its effects on the family

Psychosocial adjustment of children with chronic epilepsy and their families

Developmental Medicine and Child Neurology

Preventative social work intervention with families of children with epilepsy

Social Work and Health Care

Emotional complications of adolescent grand mal epilepsy

Journal of Paediatrics

Interaction in families of epileptic children

Journal of Child Psychology and Psychiatry

Perceived parental rearing behaviour and psychopathology in epileptic patients: A controlled study

Psychopathology

Epilepsy—a family burden?

Clinical Psychology Forum

Psychological aspects of families with epileptic patients: A study using General Health Questionnaire

The Japanese Journal of Psychiatry and Neurology

Original article
The impact of chronic epilepsy on the family