|ORIGINAL RESEARCH REPORT
|Year : 2017 | Volume
| Issue : 1 | Page : 2-7
Children with neurodevelopmental disorders: The burden and psychological effects on caregivers in Lagos, Nigeria
Andrew T Olagunju1, Yewande O Oshodi1, Charles S Umeh1, Olatunji F Aina1, Wellington A Oyibo2, Anna E Lamikanra3, Foluso E. A. Lesi4, Joseph D Adeyemi1
1 Department of Psychiatry, College of Medicine, University of Lagos, Lagos, Nigeria
2 Department of Medical Microbiology and Parasitology, College of Medicine, University of Lagos, Lagos, Nigeria
3 Blazing Trails International Center, 5001 Spring Valley Road, Ste:400 East Dallas, TX 75244-3910, Texas, USA
4 Department of Paediatrics, College of Medicine, University of Lagos, Lagos, Nigeria
|Date of Web Publication||30-Jan-2017|
Andrew T Olagunju
Department of Psychiatry, College of Medicine, University of Lagos, PMB 12003, Lagos
Source of Support: None, Conflict of Interest: None
Background: Children with neurodevelopmental disorders (CNDs) are a group requiring more attention as their care is often challenging, particularly for parents with primary caregiving roles in resource-restricted settings. This study had set out to investigate the burden and psychological distress among caregivers of children with neurodevelopmental delays. Materials and Methods: A total of 68 caregivers were recruited during the 2013 annual autism health program organized by the College of Medicine, University of Lagos in collaboration with Guaranty Trust Bank, Nigeria and Blazing Trails, USA. Of these caregivers, 60 respondents (caregivers and children) were included in the final analyses due to poorly completed questionnaires. The Zarit Caregivers Burden Scale (ZCBS) and General Health Questionnaire version 12 (GHQ-12) were administered to elicit caregivers' experience with respect to burden and psychological distress, respectively. Results: Of the 60 participants included in the final analyses, the majority constituted parents (96.3%) with mothers accounting for 71.7%; 28 (46.7%) participants were government workers and 3 (5%) were full-time housewives. The mean age of CNDs was 6.8 (±3.2) years, and 33 (55.0%) were males. Delivery by cesarian section was reported in 19 (31.8%). The common presenting complaints by caregivers were inability to walk (32.7%), repetitive behavior (25.5%), difficulty with verbal communication (10.9%), nonsocialization (9.1%), seizures (9.1%), and hyperactivity (3.6%). Problems were noticed at ≤ 1 year in 46.7% while they were noticed after 2 years in more than half the children, and a little above one-eighth (14%) had siblings with similar problems. On the ZCBS, nine (15.0%) caregivers reported a significant burden. In addition, 23 (38.3%) caregivers had psychological distress. Caregivers' burden was significantly related to the report of psychological distress in caregivers (P < 0.001) and there was a trend toward the presence of psychological distress in almost all caregivers with children experiencing seizures. Conclusions: The findings in this study underscore the need for counseling and psychosocial support for caregivers of CNDs. Further research on the emotional experience of caregivers is also warranted.
Keywords: Burden of care, caregivers, children with neurodevelopmental disorders (CNDs), neurodevelopmental disorders, psychological distress
|How to cite this article:|
Olagunju AT, Oshodi YO, Umeh CS, Aina OF, Oyibo WA, Lamikanra AE, Lesi FE, Adeyemi JD. Children with neurodevelopmental disorders: The burden and psychological effects on caregivers in Lagos, Nigeria. J Clin Sci 2017;14:2-7
|How to cite this URL:|
Olagunju AT, Oshodi YO, Umeh CS, Aina OF, Oyibo WA, Lamikanra AE, Lesi FE, Adeyemi JD. Children with neurodevelopmental disorders: The burden and psychological effects on caregivers in Lagos, Nigeria. J Clin Sci [serial online] 2017 [cited 2020 Aug 9];14:2-7. Available from: http://www.jcsjournal.org/text.asp?2017/14/1/2/199162
| Introduction|| |
Neurodevelopmental disorders are a group of disorders occurring early in development, characterized by the behavior needed for functioning and social interaction in formal or informal settings being affected. The affection can result in circumscribed or global impairment of personal, social, academic, or occupational skills, thereby resulting in behavioral problems, communication difficulties, poor self-care, and poor educational attainment. Examples of disorders with neurodevelopmental challenges in children include autistic spectrum disorders (ASDs), cerebral palsy, and epilepsy, among others.
Children with neurodevelopmental disorders (CNDs) and their management are complex public health issues deserving improved policy, service, and research attention in Nigeria., Such attention should be focused on diagnosis improvement, burden estimation, social perception, and the well-being of caregivers (who are often the parents or family) to ensure better care for the affected children. The well-being of caregivers of CNDs is important because if impaired, it could impact negatively on the quality of care and the outcome of intervention programs for these children., For example, the decision to seek treatment, the choice, type, and administration of treatment are significantly influenced by caregivers. Again, the increasing emphasis on community-based and family-centered care for CNDs further underscores the centrality of the roles of the family or caregivers.,,
The care of CNDs is more often than not very stressful for caregivers. For instance, caregivers who are largely parents in Nigeria often have to cope with behavioral challenges, difficulty in communication, functional impairment, along with disability and associated stigma. All these are additional to bearing economic costs of the prescribed treatments for any related problem. A review of the literature, though preponderantly from the West, suggests the experience of a significant burden by caregivers of CNDs. In particular, elevated degrees of psychological distress and higher rates of mental and physical health problems have been reported. However, the findings have been largely inconsistent across the study contexts as shown in the cited studies.,,,,, Some of the propounded factors for these disparate findings on the distressful experience of caregivers of CNDs include level of impairment in the child, study design and contextual issues.,
Unfortunately, little is known about the experience of caregivers in relation to their roles among CNDs. This dearth of information poses a major challenge for the provision of qualitative care for these children, especially because caregivers in resource-restricted countries do not only play a central role in ensuring the well-being of these children but are sometimes solely saddled with significant treatment responsibilities due to inequitable distribution of treatment resources, exorbitant cost of care, and poor health insurance coverage., As it is, there is a need for research efforts among caregivers of CNDs in Nigeria based on the earlier mentioned gaps and because findings among caregivers in the developed countries cannot be representative of the experience of caregivers in developing countries where the interplay of socioeconomic and cultural factors are important. In view of the constraint that poor data can have on evidence-directed planning of intervention programs and treatment services, this study was set to determine the severity of the burden and psychological distress among the caregivers of children with various neurodevelopment disorders.
| Materials and Methods|| |
The study participants consisted of caregivers of CNDs recruited during the 2013 annual autism health program organized at the College of Medicine of the University of Lagos in collaboration with the Guaranty Trust Bank (GTBank), Nigeria and expertise support from Blazing Trails, a USA-based nongovernmental organization. Essentially, it is an initiative solely focused on ASDs, and includes a rendering of specialized clinical services for registered patients, transfer of skills, and carrying out of educational activities over a period of 2 weeks. Expertise for the program was provided by in-country experts from the College of Medicine as well as international experts from Blazing Trails while GTBank provided sponsorship through the coverage of its corporate social responsibility program.
Preregistration of clients was carried out online some weeks before the program although on-site registration was also allowed. Registration, trainings, and clinical services were free of charge for all the participants. For this study, a total of 68 respondents (caregivers and children) participated; however, 60 participants were included in the final analysis of this research due to poorly filled questionnaire and incomplete data. Caregivers (primarily constituting parents in this study) were defined as anyone who was primarily providing care for CNDs and not caring for another ill person. Again, the caregivers included in this study were psychologically fit to give consent as well as fill in the complete questionnaire, and were not suffering from any physical or emotional disorder that might confound their burden and psychological distress.
Approval for the study was granted by the Health Research Ethics Committee of the Lagos University Teaching Hospital. Participants were assured of the confidentiality of their information and were free to decline consent in the study without any adverse impact on their consultation or services during the program. Those with significant burden and emotional distress were counseled and referred for further attention where necessary.
Following written informed consent of the participants, they were administered a designed questionnaire that elicited information on the child (gender, age, type of delivery, behavioral problems, and history of problems in siblings) and the caregivers (relationship with the child, gender, and employment status). This was followed by the administration of the Zarit Caregivers Burden Scale (ZCBS) to explore the caregiving experience and its associated burden among the participants. ZCBS  is a 22-item questionnaire with a 5-item response set ranging from “never” to “nearly always.” Each item is rated from 0 to 4, with higher scores denoting a higher burden for a particular item. ZCBS is a valid instrument and has been extensively used in studies conducted in Nigeria., Classification of the scores into significant burden for those scoring above 40 and no significant burden for those scoring 40 and below was done in line with previous categorization. Subsequently, the General Health Questionnaire-12 (GHQ-12) was used to elicit symptoms of psychological distress among the caregivers. GHQ-12 is the shortest version of the General Health Questionnaire. It consists of 60 items in its original form but shorter versions of 30, 28, 20, and 12 are available. Both original and shorter versions have cross-cultural validity and reliability. Using bimodal scoring scale (0, 0, 1, 1), the maximum obtainable score was 12; and scores >3 were regarded as a positive screen on the GHQ-12. It has been validated and well-used across multiple settings including Nigeria.,,,,
Triaging for the annual autism program and collection of data were anchored by doctors, trainee clinical psychologists, and ad hoc research assistants. Screening, along with assessment for ASD, was done by admixture of in-country and international experts consisting of physicians, behavioral therapists, clinical psychologists, speech therapists, and audiologists. Following informed consent, the study instruments including designed questionnaire, ZCBS, and GHQ-12 were given to all the participants to be filled. Assistance and clarifications were provided where necessary.
Data analyses were carried out using the 17th edition of Statistical Package for the Social Sciences (SPSS-17). Descriptive statistics such as means, frequencies, and percentages were used to represent the data. Chi-square and Fisher's exact test were used to ascertain the association between the variables. A P value < 0.05 in two-tail was considered to be statistically significant.
| Results|| |
The response rate recorded in this study was 88.2% (n = 60/68) due to incomplete data. In view of the poorly filled questionnaires, an analysis of individual item or variable of interest was done in certain instances based on the total number of participants who responded to that item. In situ ations where an item was not filled by all the participants, the total frequency (n) used for the specific item or variable is reflected in the table for easy interpretation.
Characteristics of children and caregivers
[Table 1] depicts the elicited information on the children and their caregivers. Of the 60 caregivers of CNDs, the majority (96.3%) was parents with 43 (71.7%) being mothers, 28 (46.7%) were employed as government workers, and 3 (5%) were full-time housewives. The mean age of the children was 6.8 (±3.2) years, and most of the children were males 33 (55.0%). Delivery of the child was by cesarian section in 31.7% of the participants. In 46.7%, the problems had been noticed when the child was either at or under 1 year of age while in over half of the children, these were noticed after 2 years. A small proportion (14%) had siblings with similar problems.
|Table 1: Sociodemographic characteristics of respondents (children and caregivers)|
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Profile of common complaints among children with neurodevelopmental disorders
[Table 2] shows the profile of the common presenting complaints by caregivers about their children. The most frequent complaint among the children was inability to walk 19 (31.7%). About one-fourth (25.5%) had repetitive behavior, 10.9% had difficulty with verbal communication, and equal proportions (9.1%) of the children were not socializing and had seizures each while a few were hyperactive (3.6%).
Burden of care and psychological distress among caregivers
As shown in [Table 3], the Zarit burden of care schedule revealed that 9 (15.5%) parents (caregivers) reported a significant burden in their caregiving role. Similarly, 23 (39.6%) caregivers had GHQ score suggesting psychological distress. There was a statistically significant relationship between caregiversc burden and the psychological distress reported among caregivers. Specifically, a majority of the caregivers with more than an average burden also had psychological distress (P < 0.001). The difference in the mean scores on Zarit scale among those that had psychological distress compared to those without was statistically significant (P ≤ 0.05). Again, there was an observed relationship with the presence or absence of seizures and psychological distress, as almost all those with children experiencing seizures reported scores suggestive of psychological distress on the GHQ-12.
|Table 3: Relationship between caregivers burden and psychological distress|
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| Discussion|| |
With the growing emphasis on the preference of community-based as well as need-tailored care for CNDs, caregivers' roles with the related issues have been posited to become more prominent in research and public health discourse on CNDs.,, An important issue borders on caregivers' emotional experience in relation to their caregiving roles. This is particularly important in resource-restricted settings where formal caregiving is virtually nonexistent, and caregiving roles are largely executed by parents as seen in our study with a preponderance of caregiving parents. As it is, such parents who are also primary caregivers seems to bear a “double burden” because different degrees of burden have been associated with their caregiving roles and parental roles. This study fielded a number of pertinent findings on the experience of caregivers among CNDs in Nigeria. For instance, findings in this study observed the experience of a significant burden and emotional distress in relation to caregiving roles among a considerable proportion of the participants. Again, caregivers with a significant burden as well as those with children with history of seizure were more likely to report psychological distress.
The finding on caregivers' burden in this study was consistent with the findings previously reported among caregivers of other ill or challenged populations in Nigeria,,,, and attested the stressful nature of the caregiving roles. Specifically, three in every 20 caregivers in this study considered their caregiving roles to be burdensome. Interestingly, a previous study among the caregiving mothers of children with diagnosed autism observed a manifold increase in the frequency of caregivers with a significant burden in comparison to this study using the same instrument. The difference between the prevalence of caregivers with burden in our study and the cited study can be linked to a number of factors. For instance, our study was focused on caregivers of CNDs in general while the cited study was solely on mothers of children with autism. Again, the children in our study were significantly older than the children in the cited study and this may have made the caregivers in this present study better adapted.
With respect to emotional distress, nearly eight in every 20 caregivers were psychologically distressed in this study. This frequency of emotional distress among caregivers of CNDs was not just high but depicted about twofold and tenfold increases when compared to what has been fielded among caregiving mothers of preterm and fullterm neonates, respectively. Again, when compared to the prevalence of emotional distress among general populations of adult Nigerians in previous studies, this study reported a twofold increase in the burden of distress among caregiving Nigerian adults., Furthermore, those with a significant burden and children with seizure were also more likely to report psychological distress. Overall, this was not surprising as caregiving among CNDs have been reported to be particularly stressful  and often compounded among caregivers of patients with comorbidity of seizure disorder. Some of the common sources of stress for caregivers of CNDs include deficiency in these children in multiple aspects of functioning including physical, social, communication, and behavior, among others., This is in addition the other psychosocial and economic burdens that they bear resulting from stigma, parenting, and cost of treatment, to mention few.
Given that there is a dearth of information on the caregiving experience among CNDs in Nigeria, this study represents an important source of data for comparison with future research. However, a number of shortcomings were identified. These included its cross-sectional design and small sample size, which together suggest caution in the extrapolation of the findings in this study to other populations. Again, the associated factors of caregivers' burden that were explored in this study are by no means exhaustive. A number of the items in the designed questionnaire were poorly filled, which has been addressed in the subsequent annual autism program. Overall, future research should use a more robust sample size and adopt longitudinal controlled design to allow better inference with regard to causality.
| Conclusion|| |
Evidently, caregivers' roles are pivotal to the care of CNDs, particularly in resource-restricted settings such as Nigeria where formal caregiving is virtually nonexistent and caregivers largely constitute parents. Such caregiving roles are frequently burdensome as well as distressful. For example, this study observed that approximately three and eight in every 20 caregivers reported significant burden and psychological distress, respectively. Caregivers with significant burden were more likely to experience distress while those with children with history of seizure also trend toward being psychologically distressed. To this end, this study underscores the need for support in the form of counseling, training, and psychological support for caregivers in order to enhance their roles in the care of CNDs. Future research on the experience of caregivers in relation to specific needs of CNDs is also warranted.
We wish to express our gratitude to GTBank for its support for the autism project in Nigeria and our appreciation also goes to all those providing care to CNDs.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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