|Year : 2013 | Volume
| Issue : 4 | Page : 236-242
Childhood epilepsy in a tropical child psychiatric unit: Challenges of providing care in a resource-constrained environment
Edwin Ehi Eseigbe1, Taiwo Lateef Sheikh2, Folorunsho Tajudeen Nuhu2
1 Department of Paediatrics, Ahmadu Bello University Teaching Hospital, Zaria, Nigeria
2 Department of Paediatrics, Federal Neuro Psychiatric Hospital, Kaduna, Nigeria
|Date of Web Publication||4-Dec-2013|
Edwin Ehi Eseigbe
Department of Paediatrics, Ahmadu Bello University Teaching Hospital, Zaria
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Background: Epilepsy is an important cause of childhood morbidity and its care is fraught with challenges. Itinerant search for remedy and manifestation as or with psychiatric disorders could result in presentation in a psychiatric unit. Identification of these challenges is essential to providing optimal care. The objective was to identify caregiver challenges in the provision of care to children with epilepsy presenting in a psychiatric unit.
Materials and Method: Administration of a structured questionnaire to caregivers of children with epilepsy presenting, between September and December 2011, in the newly constituted Child and Adolescent Mental Health(CAMH) Unit of the Federal NeuroPsychiatric Hospital, Kaduna Nigeria.
Results: A total of 84 caregivers were interviewed. The age range of the caregivers was 23 to 62 years (mean 38 ± 9.2 years) and a female preponderance (50, 59.5%). Most of the caregivers were in the upper social classes (I-III, 79.8%). A high number of challenges were indicated by majority 65, 77.4%) of the caregivers. The recurrence of seizures (84,100%) was the commonest challenge while the experience of discrimination (17, 20.2%) was the least. All caregivers had sought remedy from multiple health care options. Challenges were significantly (P < 0.05) associated with the female caregiver, age < 40 years, generalized type of epilepsy and residing outside Kaduna.
Conclusion: The study identified multi dimensional caregiver challenges and highlighted the need for provision of comprehensive health and social services to children with epilepsy and their families.
| Abstract in Spenish|| |
Fond: L'épilepsie est une cause importante de morbidité de l'enfance et de ses soins se heurte à des défis. Recherche itinérant de remède et manifestation comme ou souffrant de troubles psychiatriques peut entraîner de présentation dans une unité psychiatrique. L'identification de ces défis est essentielle pour procurer des soins optimaux. L'objectif était d'identifier les défis du soignant dans la prestation de soins aux enfants épileptiques présentant dans une unité psychiatrique.
Matériel et Méthode: Administration d'un questionnaire structuré pour prendre soin des enfants atteints d'épilepsie présentant, entre septembre et décembre 2011, de la nouvellement constitué Child and Adolescent unité de Health(CAMH) mentale de l'hôpital neuropsychiatrique fédéral, Kaduna Nigéria.
Résultats: Un total de 84 personnes soignantes ont été interviewés. La tranche d'âge des prestateurs était de 23 à 62 ans (moyenne de 38±9.2 ans) et une prépondérance féminine (50, 59,5 %). La plupart des prestateurs étaient dans les classes sociales supérieures (I-III, 79,8 %). Un grand nombre de défis ont été indiqué par majorité 65, 77,4 %) des prestateurs. La récurrence des convulsions (84 100 %) a été le défi plus fréquente lors de l'expérience de discrimination (17, 20,2 %) a été le moins. Tous les soignants ont cherché remède de multiples options de soins de santé. Défis étaient significativement (p < 0.05) associé à l'aidant de femelle, age < 40 années, généralisé type d'épilepsie et résidant à l'extérieur de Kaduna.
Conclusion: L'étude identifié multi dimensionnelle soignant défis et a souligné la nécessité pour la fourniture de globale de la santé et des services sociaux aux enfants atteints d'épilepsie et à leur famille.
Mots-clés: Soignant, défi, l'enfance, épilepsie
Keywords: Childhood, caregiver, challenge, epilepsy
|How to cite this article:|
Eseigbe EE, Sheikh TL, Nuhu FT. Childhood epilepsy in a tropical child psychiatric unit: Challenges of providing care in a resource-constrained environment. Ann Afr Med 2013;12:236-42
|How to cite this URL:|
Eseigbe EE, Sheikh TL, Nuhu FT. Childhood epilepsy in a tropical child psychiatric unit: Challenges of providing care in a resource-constrained environment. Ann Afr Med [serial online] 2013 [cited 2022 Jan 18];12:236-42. Available from: https://www.annalsafrmed.org/text.asp?2013/12/4/236/122693
| Introduction|| |
Epilepsy affects over 50 million persons worldwide and over half of the cases begin in childhood. , It presents with or as psychiatric manifestations in 20%-60% of cases.  More than 80% of those with the disorder live in developing countries, mainly sub-Saharan Africa.  Prevalence rates of 2-58 per 1000 persons have been reported from rural African communities including a report of 6.2 per 1000 from Nigeria.  In spite of advances in management of epilepsy, majority of those with epilepsy in Africa still experience significant treatment gap. This gap has been defined as the difference between the number of people with active epilepsy and the number whose seizures are being appropriately treated in a given population at a given point of time.  The consequences of this gap are grave and include a mortality rate 2-3 times greater than that of the general population.  Death occurs from severe form (status epilepticus), sudden unexplained death in epilepsy (SUDEP), and suicide. 
The provision of optimal care for those with epilepsy bridges the gap and diminishes the consequences. However, this provision is fraught with challenges. Availability and accessibility to appropriate health services are some of the troubling challenges particularly in the most susceptible regions of the world. , Attempts at overcoming these challenges often result in the itinerant search and utilization of any form of remedy from any source. Such indiscriminate search has resulted in use of harmful remedies with grim outcomes.  The search has also resulted in seeking for remedies in any available orthodox setting such as a psychiatric setting, more so, when the condition could be associated with psychiatric co morbidities. , Management of epilepsy in a psychiatric setting could present its own set of challenges considering that epilepsy is not primarily a psychiatric disorder and the stigma associated with patronizing a psychiatric hospital in our environment.  However, the patronage provides an opportunity to further identify and characterize the challenges confronting provision of care to children with epilepsy.
The identification of these challenges would facilitate development and implementation of policies that will culminate in the provision of optimal care. This would also be complementary to initiatives such as the Global Campaign Against Epilepsy (GCAE) which focuses on improving acceptability, access to services, preventive, and quality of care of children with epilepsy. ,
The aim of the study was to identify the challenges encountered by caregivers in the care of children with epilepsy presenting to a tropical child and adolescent mental health unit.
| Materials and Methods|| |
The study was conducted in the Child and Adolescent Mental Health (CAMH) Unit of the Federal Neuro Psychiatric Hospital (FNPH) in Kaduna Northwestern Nigeria between September and December 2011.
The unit was inaugurated in September 2011 and offers child and adolescent mental health services and pediatric neurological services to patients in Kaduna metropolis and referrals from other parts of the country. The unit is headed by a consultant child psychiatrist and among its staff are six resident doctors, two clinical psychologists, three social workers, 10 nurses, and a visiting consultant pediatrician. It is a 20-bed unit which runs a clinic on Fridays. All cases of epilepsy are managed in the unit by the consultant pediatrician and co managed with the child psychiatrist where indicated. Electroencephalogram (EEG) and laboratory investigations such as assay of serum electrolytes are carried out in the hospital. However, for other relevant investigations such as computed tomography scan or magnetic resonance imaging the patients are referred to offering centers.
Management of epilepsy in the unit includes the administration of antiepileptic drugs (AEDs), monitoring of compliance, counseling of caregivers and patients, provision of social support services. Those requiring neurosurgical services are also referred out.
A total of 140 new patients were seen in the unit during the study period. Out of these, 84 were diagnosed as having epilepsy without psychiatric co morbidities. Consequently, the study population included the 84 caregivers attending the CAMH Unit whose children or wards fulfilled the International League Against Epilepsy definition of epilepsy and had a EEG done. Epilepsy was defined clinically as chronic brain disorder manifesting as recurrent unprovoked seizures occurring at an interval greater than 24 h. 
A structured questionnaire was administrated to the caregivers and used in obtaining information about their age, sex, and social class distribution, child's/ward's type of epilepsy, health care options utilized prior to presentation at the CAMH Unit, and challenges encountered in the provision of care.
Social class distribution was according to Ogunlesi et al., classification. For the purpose of the study, those in social classes I-III were further classified as being in the upper social class, while those in classes IV and V as being in the lower social class.
The challenges were defined as any variable that caregiver considers an appreciable problem in course of providing care to the child with epilepsy. Characteristics of caregivers such as their socio demographic variables have been reported to influence burden felt in the provision of care for persons with epilepsy.  To determine the relationship between caregiver characteristics and challenges encountered in this study, the frequency of occurrence of each challenge is documented and the median number of these occurrences determined. The median provides a valid measure of central tendency least influenced by outlying values. Caregivers with number of challenges equal to and higher than the median will be classified as having high challenges, while those with lower than median number of challenges will be classified as having low challenges for the purpose of analysis.
Similarly, for the purpose of the study, a health care option was defined as treatment modality utilized or patronized by caregivers in the quest for remedy to their child's disorder. Four major health care options were identified. These were visits to a formal health facility (a primary health care center, general or specialist hospital), the traditional healer, religious houses, and the use of informal home care (home care devoid of specialist's care or care from persons who have received specialist training).
Consent was obtained from the caregivers and ethical approval was got from the research ethics committee of FNPH Kaduna.
Data were analyzed using Epi Info 3.5.3 statistical package. Chi-square test, with Yates' correction were appropriate, was used in testing for significance between characteristics of the caregiver and challenges encountered in the provision of care. Level of significance was set at P value less than 0.05.
| Results|| |
Out of the 140 children seen during the study period, 84 (60%) children had epilepsy without psychiatric co morbidities. It was these children whose caregivers were analyzed. Epilepsy was generalized in 70 (83.3%) and focal in 14 (16.7%) of the children.
Age, sex, and social class distribution of caregivers:
The age range of the caregivers was 23 to 62 years (mean: 38 ± 9.2 years) and most were below 40 years [Table 1]. There was a female (50, 59.5%) preponderance among the caregivers (M: F, 1:5). All the caregivers were parents of the children. Their social class distribution was as follows: I, 8 (9.5%); II, 20 (23.8%); III, 39 (46.4%); IV, 14 (16.7%); and V, 3 (3.6%). Most (67, 79.8%) were in the upper (I-III) social classes. Among the caregivers, four (4.8%) had a family history of epilepsy.
|Table 1: Age and sex distribution of 84 caregivers of children with epilepsy |
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Caregiver challenges in providing care
[Table 2] shows the number of major challenges indicated by the caregivers. The total number of challenges was nine and indicated by eight (9.5%) caregivers. The least number of challenges indicated were two and by two (2.4%) caregivers. The median number of challenges was six and it was the most frequently occurring number of challenges (19, 22.6%). Overall, 65 (77.4%) caregivers had six or more major challenges. The recurrence of seizures was the commonest challenge and indicated by all the caregivers [Table 2]. Poor school performance was indicated as a challenge by 49 (58.3%) caregivers. Accessing information about care was the least challenge 27 (32.1%) identified by the caregivers. All the caregivers with a family history of epilepsy had a high number of challenges. However, this was not significant (P < 0.05). Stigmatization, indicated as haven experienced communal isolation, and discrimination against the child or family due to epilepsy was pointed out by 38 (45.2%) and 17 (20.2%) of the caregivers, respectively.
|Table 2: Challenges indicated by 84 caregivers of children with epilepsy |
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The presence of a high number of challenges in the caregiver was significantly (P < 0.05) associated with female sex, age less than 40 years, generalized type of epilepsy, and residing outside Kaduna [Table 3].
Challenges and caregivers patronage of health care options
In the quest for care, the caregivers patronized four major health care options. Visit to a formal health facility was the commonest (84, 100%). Others were visits to the traditional healer (49, 58.3%), religious houses (36, 42.9%), and informal home care (23, 27.4%). All the caregivers had patronized more than one of the indicated options. In addition, a total of 8 (9.5%), 55 (65.5%), and 21 (25.0%) had utilized 2, 3, and 4 of these as health care options, respectively, and interchangeably. Generally, use of multiple health care options was associated more with high challenges but it was not significant [Table 4].
| Discussion|| |
The caregivers indicated medical, social, and economic challenges in the course of providing care for their children with epilepsy. There have been similar reports of these challenges confronting care providers in epilepsy. ,,, The medical challenges were dominant in this study and seem to constitute the main challenges in the course of providing care to those with epilepsy in this region of the world. , Prevalent poor health care services coupled with strong cultural beliefs and misconceptions about the disorder tend to stoke the challenges. , Also there was a high prevalence (60%) of childhood epilepsy in the CAMH Unit. The prevalence is higher than that reported by Ogun et al., (45.3%) Stanley et al., (2.9%) from psychiatric units in southern Nigeria. Visit to a psychiatric institution for medical consultation has been associated with stigmatization in the country.  This could constitute a challenge to accessing health care if such care were to be available in such a setting. In spite of this possibility and the fact that the setting might not provide optimal services for the management of epilepsy, presentation to the unit was observed to be comparatively high. The observation could signify a higher burden of epilepsy in the study environment, dearth of specialist services, and discontentment with other existing pediatric neurology services or a combination of all. Wammanda et al., reported seizure disorders as one of the commonest pediatric neurological disorder in the study environment. Also Eseigbe et al., reported that lack of specialist services and caregiver nonsatisfaction with available health care services in the care of children with special health care needs in the same environment. The findings in this study underscores the need to broaden and strengthen delivery of specialized health services, even in unusual but highly patronized orthodox health care settings, improve on community enlightenment and support toward chronic disorders such as epilepsy in susceptible communities. This would contribute to immensely reducing caregiver challenges.
The caregivers were mainly females underscoring the important role women play in seeking and providing health care for children.  This assertion is supported in this study by the observation that females indicated significantly higher number of challenges. It validates the need to promote female empowerment initiatives such as the Millennium Development Goal number 3. 
Most of the caregivers were less than 40 years old and had a significantly higher number of challenges than those older. The burden of other obligations, peculiar to this age group, such as rearing of other children and active pursuant of other life goals are likely contributory to the significant findings.
Over two-thirds of the caregivers belonged to the upper social classes. The higher representation could be more of a function of those in these classes' ability to access health care than a higher prevalence of epilepsy in the classes. The finding that being in these classes did not attenuate the number of challenges encountered highlights the expansive nature of demands in providing care for children with epilepsy.
The presence of generalized seizures in caregiver's child was significantly associated with high challenges. The presentation of a generalized seizure is often dramatic and worrisome with a tendency toward attracting public attention. This obvious mode of presentation is more likely to instigate stigmatization and discrimination, than focal seizures, in an environment highly prone to such attitudes like ours. This could have contributed to the significantly high number of challenges with generalized seizures.
Recurrence of seizures was indicated as a challenge by all the caregivers and demonstrates one of the major problems confronting management of epilepsy in the African region. ,, Strong cultural perception of the disorder, wrong diagnosis, irregular inappropriate drug dosing, and non availability of drugs are some of the contributing factors. ,,, Consequences include sudden death from epilepsy and the use of multiple health care options. ,, The use of multiple health care options exposes the child to the risks associated with their use. For example, the use of nonscientific health care options have been found to be hazardous to child health care delivery. 
Provision of home care, in chronic illnesses, has been observed to be daunting even in developed countries where several cushioning facilities are available. , Apprehension, discrimination, and communal isolation driven by alarming traditional beliefs and myths about epilepsy could be adduced for the preclusion of home care to caregivers or immediate family members. For the majority of these caregivers, there is a need for initiation and implementation of family-centered programs that assist in the provision of care to the child and support for the families. An example is the concept of the medical home which is defined by the American Academy of Pediatrics as primary care that is accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective. 
Poor school performance has been reported among children with epilepsy.  This has been attributed to several factors including uncontrolled seizures resulting in absenteeism, mockery at school, and impact of some of the AEDs on learning.  Additionally, some children are discriminated against and denied educational opportunities because they have epilepsy. Nuhu et al., reported an 18% school rejection rate among a group of adolescents with epilepsy. Over half of the caregivers indicated their child's poor school performance as a challenge in this study. There is a need for a school health program that identifies and supports those with epilepsy. Teachers have been reported to have a poor perception of epilepsy and their enlightenment cannot be overemphasized.  Furthermore the educational, and indeed all, rights of the children should be enforced and those found infringing on these rights reprimanded and subsequently enlightened.
In view of the magnitude of challenges identified by the caregivers, it is not surprising that maintaining caregiver well-being was indicated as a challenge. Handling the health care needs in addition to meeting other obligations are quite tasking and impact significantly on the emotional, psychological, financial, and physical well-being of the caregiver.  For example, stress has been identified as a cofounding issue among caregivers in epilepsy and other conditions with special health care needs. ,, It calls for the formal incorporation and strengthening of caregiver psychosocial management in the management plan for children with epilepsy.
The degree of commitment required in the provision of care, particularly when there no other tangible means of support, would contribute immensely to the challenges of not meeting other caregiver obligations. Inadequate knowledge and skills as to how to handle this engaging commitment could be another contributing factor. This caregiver enlightenment with regards to management of scarce resources while providing care in epilepsy is advocated.
Family members also bear the burden of caring for children with epilepsy.  All caregivers who had a positive family history indicated higher number of challenges most likely occasioned by the additional burden. However, the observation was not significant. Probably, a study population with a larger number of such caregivers would provide more insight.
The uses of multiple health care options in the quest for health care in epilepsy and related disorders have been reported. ,, In this study, this practice was not significantly associated with high number of challenges encountered by the caregivers. It could imply that the impact of the challenge rather than the number of challenges is more important in determining quest for care. In the quest for care, the tendency is for caregiver to initially employ convenient or traditionally acceptable means to obviate a major issue such as occurrence of seizures before eventual presentation in an orthodox health facility. However, it was observed in this study that patronage of a formal health facility constituted the initial health care option for some caregivers. Defaults from such visits have been attributed to non availability of specialist services, financial constraints, poor understanding of the diseases process, or perceived inability of a health facility to cure an experienced challenge. ,,, Thus, it is not surprising that despite the fact that over 90% of the caregivers utilized a formal health facility, over 60% of them patronized multiple health care options. Consequently, provision of efficient and affordable services at the formal health facilities should be pursued vigorously as this would assist in diminishing the challenges.
Contending with stigmatization and discrimination were also regarded as challenges by the caregivers. These have been reported as major issues in the care of, and those providing care for, those with epilepsy. ,, Poor knowledge or misconceptions about the cause and mode of acquisition of the disorder promote these issues. They impact negatively on the quality of life of those with epilepsy and can even lead to suicide. Their occurrence underscores the need for improved and continuous public enlightenment.
The implications of not meeting up with these challenges are grim for the child and family. Grave outcomes such as poor quality of living, widened treatment gap, poor productivity output from affected families, and even death become readily probable. Overcoming these challenges would require both specific and general interventions. The specific interventions should be able to identify those who have epilepsy, provide cheap, effective, and affordable drugs, subsidize cost of investigations, ensure intercurrent supervision of management, and facilitate training and provision of health care specialists in epilepsy. General interventions should include improving on public awareness, relevant policy formulation, and implementation, protection of the rights of children with epilepsy, and support of their families, research into new methods of managing the disorder in respective communities, and collaboration between medical and socioeconomic sectors of government for effective outcomes. Much of these are incorporated in the global campaign against epilepsy. Expectedly, national programs keying into global initiatives such as GCAE would assist in ameliorating challenges identified in this study.
| Limitation of Study|| |
The specific impact of each identified challenge on the caregiver or child in this study was not assessed. Also, the significance of other variables such as family size and presence of other morbidities in the caregivers or other members of the family was not studied. These provide basis for further research.
| Conclusion|| |
The study underscores the relevance of CAMH Units in the management of epilepsy particularly in resource-limited communities. Overall, it highlights the multidimensional challenges associated with childhood epilepsy. It emphasizes the need to invigorate community awareness, promote appropriate caregiver health care-seeking behavior while providing comprehensive health and social services for children with epilepsy and their families.
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[Table 1], [Table 2], [Table 3], [Table 4]
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