MIND AND BODY: THE INTERPLAY OF EPILEPSY AND MENTAL HEALTH

By Edwige Smague 2024

Epilepsy is a chronic neurological disease that can severely affect the quality of life of patients and their families. Forced to take on a role for which they are unprepared, families often lack support and find themselves on their own when faced with the complexity of seizures.

INTRODUCTION

After diagnosis, members of the same family find themselves taking on the role of carer, either in addition to outside support or by taking on the role themselves. This post-diagnosis period considerably alters the lives of all those involved, affecting the patient's well-being and that of their parents, children, and siblings. It is vital to understand the experiences of these carers to support them and ensure they are adequately prepared. It is essential to consider factors such as cultural beliefs, socio-economic status, geographical location and access to healthcare resources. Indeed, the experiences of families and carers, particularly in rural Australia, hinder the development of strategies and interventions that can effectively address the specific needs in remote areas.

The primary responsibility for care generally lies with family members, i.e. the carer, so the adults in the family will naturally look after the child once they have been discharged from the hospital. However, due to a lack of awareness of the specific needs of children, these non-professional carers often come up against many obstacles and challenges compared to professional carers. Indeed, limited access to information limits these families to more in-depth knowledge, and this can lead to negative attitudes towards epilepsy [1]. These perceptions, which do not necessarily change for the better, can also have a psychological impact on carers and the person with epilepsy, with negative emotions being felt. Recent research indicates that almost half of all carers suffer from depression and anxiety [2]. The aspects that worry parent carers are often linked to their child's well-being and development, particularly regarding physical and psychological abilities, social, behavioural and cognitive skills, and school performance. The future of epilepsy and its management is also put on the back burner [3]. 

A certain amount of worry can make carers more vigilant and cautious, helping them manage the situation better. Nevertheless, this worry becomes too overwhelming, like excessive fear. In that case, it can paralyse them, overwhelm them with anxiety, prevent them from reacting correctly, or even lead to emotional problems such as depression [4].

Carers generally have a compromised quality of life. This is due to the social and psychological factors that can have a negative impact on their lives [5]. When a child is diagnosed with epilepsy, parents may unconsciously feel that they have lost a healthy child and that their child is isolated from other children whose daily lives are not hampered by a disabling condition [6]. Consequently, physical symptoms can be a warning sign of an underlying problem of depression, such as chronic fatigue, headaches, unexplained physical pain, family conflicts and financial difficulties [7]. Often, their symptoms are ignored as carers focus on the many challenges facing their child with epilepsy, including school performance, lack of physical activity and reduced social participation [8].

The most challenging aspects of raising a child with epilepsy include changing roles within the family, the unpredictable nature of seizures and the lack of a long-term prognosis [12]. Families of children with epilepsy often experience dysfunction, including increased stress, communication barriers and financial mismanagement [13]. In addition, certain parenting behaviours can harm families - for example, overprotective behaviour can increase stress levels in the home [14]. Establishing routines and adopting more open communication is essential. Although epilepsy is generally seen as an ordeal for the whole family [15], it is necessary to consider that the primary carer (usually the parent) has different experiences from other family members (siblings, grandparents). Families often do not benefit from any advice or intentional, ongoing sharing of knowledge or information about epilepsy. 

Studies into epilepsy have highlighted the difficulties families have in obtaining appropriate medication from local clinics (primary care facilities), particularly for families in remote areas of Australia. Over time, experience has taught these carers to recognise the onset of a seizure, and it is only when they are exhausted or because the treatment is not working that they resign themselves to buying drugs from their funds. 

CONCLUSION

The importance of sound care includes the patient, family members, and carers for overall well-being. These frontline families often must adapt to devoting much time and attention to the patient's care. Over time, an understanding of the challenges helps to identify assistance that is better adapted to the unpredictable nature of crises, the management of treatment regimes, the presence of stigma, the emotional burden of anxiety and depression, and the psychosocial impacts. Families and carers can implement a support system in which both carers and patients benefit from emotional support.

REFERENCES 

[1] [2] [3] [4] [5] [6] [7] [8] [9] [10] [11] [12] [13] [14] [15] Liling Yang, Jianlin Ji, Qunfeng Lu, Ping Tang, Yan Jiang, Hanlin Yang, Wenjuan Tang, Seizure: European Journal of Epilepsy, Volume 106, March 2023, Pages 117-128 [science direct]