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Sango, P.N.;  Deveau, R. People with Intellectual Disability in Nigeria. Encyclopedia. Available online: https://encyclopedia.pub/entry/26668 (accessed on 03 May 2024).
Sango PN,  Deveau R. People with Intellectual Disability in Nigeria. Encyclopedia. Available at: https://encyclopedia.pub/entry/26668. Accessed May 03, 2024.
Sango, Precious Nonye, Roy Deveau. "People with Intellectual Disability in Nigeria" Encyclopedia, https://encyclopedia.pub/entry/26668 (accessed May 03, 2024).
Sango, P.N., & Deveau, R. (2022, August 30). People with Intellectual Disability in Nigeria. In Encyclopedia. https://encyclopedia.pub/entry/26668
Sango, Precious Nonye and Roy Deveau. "People with Intellectual Disability in Nigeria." Encyclopedia. Web. 30 August, 2022.
People with Intellectual Disability in Nigeria
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This entry is adapted from the peer-reviewed paper 10.3390/disabilities2030034

Intellectual disability (ID) is an emerging field of research in Nigeria. According to Maulik et al., the highest prevalence of people with an intellectual disability (ID) are seen in low- and middle-income countries (LMIC). In 2018, the World Health Organization estimated that 29 million people in Nigeria were living with a disability. Nigeria signed the United Convention on the Rights of Persons with Disabilities (UNCRPD) and ratified its optional Protocol in 2010—an attempt to protect the rights of disabled people and, in January 2019, passed the Discrimination Against Persons with Disabilities (Prohibition) Act 2018.

intellectual disability Nigeria family parents scoping review

1. Introduction

According to Maulik et al. [1], the highest prevalence of people with an intellectual disability (ID) are seen in low- and middle-income countries (LMIC). Authors and researchers have continuously noted the scarcity of research on the African continent about people with ID compared to Western countries, e.g., [2][3][4]. This dearth in research can be argued to be one of the sources of continued neglect, stigmatisation and limited care service provision for people with ID and their families (see [3]). It has also been suggested that research on ID has enabled Western governments to create systems and structures that enable both government and private-funded social care provisions and improvements on the inclusion of people with ID in different parts of society, such as health, education, employment and housing [3]. Some African countries such as South Africa seem to be carrying out more research about people with ID than other African countries such as Nigeria, which is the country of focus in the current entry. This was evidenced in a scoping review by Ngenga [2], which found two out of the three papers to have met the criteria set in relation to people with ID to stem from South Africa and the third from Nigeria. Moreover, Capri et al. [5] recently carried out a scoping review on the rights and citizenship of people with ID in South Africa and found 59 papers to be relevant.
In the absence of research on the prevalence of ID in Nigeria (see [6]), it is not possible, other than through extrapolations from other countries, to estimate the overall number of people with ID [4] (p. 88), [6]. In 2018, the World Health Organization estimated that 29 million people in Nigeria were living with a disability [7]. The lack of information, poverty, inconsistent assessment methods and possibly the desire of some families to hide such disabilities due to stigma and negative attitudes toward disabled people, e.g., [4][8][9][10], are likely to contribute to the continued neglect of issues affecting people with ID and their families. Nigeria is located in Western Africa, bordering the Gulf of Guinea, and is estimated to have a population of 219,460,000 people [11]. The country is often described as the “Giant of Africa” due to having the largest economy in Sub-Saharan Africa, and it has a growing, relatively youthful population, where 62% are between the ages of 0 and 24 years [11][12]. Nigeria is ethnically and culturally diverse, with over 250 ethnic groups speaking over 500 languages [10]; the main languages include English, Hausa, Yoruba and Igbo (Ibo), with Islam, Christianity and other religions being practiced in the country [4][11]. Although the country relies heavily on oil as its main source of foreign exchange earnings and government revenues, its economic growth has also been driven by growth in agriculture, telecommunications and services [11].
Notwithstanding the country’s economic potential, the Nigerian National Bureau of Statistics’ “Poverty and Inequality in Nigeria 2019” report highlighted that 40% of the total population (almost 83 million people) live below the country’s poverty line of 137,430 naira (381.75 USD) per year [8]. The association between poverty and disability has been repeatedly shown [13][14][15], and Nigeria’s poorly funded, almost absent social welfare system means that most support for people with a range of disabilities is provided by families, the community or religious sources [4].
Nigeria signed the United Convention on the Rights of Persons with Disabilities (UNCRPD) and ratified its optional Protocol in 2010—an attempt to protect the rights of disabled people [16] and, in January 2019, passed the Discrimination Against Persons with Disabilities (Prohibition) Act 2018 [17]. However, Nigeria has yet to implement the adequate measures required to promote the legal rights of disabled people in all aspects of society [16]. It has been argued, e.g., [4][18][19], that stigma and negative attitudes towards disabled people in countries such as Nigeria are often due to a public lack of awareness and understanding of the causes of disabilities. This lack of understanding and awareness affects the treatment and care of people with disabilities in Nigeria. As a signatory of the UNCRPD, the country is obliged to maintain the rights and dignity of its disabled citizens, including those with ID, and therefore, it is crucial for more ID-focused research to inform and guide transformative interventions needed to improve the lives of people with ID in the country.
Within the range of disabilities (e.g., physical, sensory and intellectual), ID appears to be particularly “hidden” in communities, policies and research. Scior et al. [20] argued that, globally, people with ID are the most abused, stigmatised, marginalised and socially excluded (also see [21]). For example, a recent survey conducted in Northern Nigeria [22] used local community-based and disabled people’s organisations in five administrative regions to contact disabled people in their communities. The majority of the 1067 respondents reported that they had physical, hearing or visual disabilities, and only 0.3% of the respondents were identified as having the characteristics of ID using the Washington Group Extended Set on Functioning questionnaire [23].
The literature has consistently acknowledged the scarcity of information and empirical research about people with ID in developing countries such as Nigeria, e.g., [2][4][24]. For example, a recent meta-synthesis [6] of disability research in Western Africa revealed that, of the 223 disability articles from West Africa reviewed, only 24 were papers related to people with ID in the whole of West Africa; however, there was no information from the meta-synthesis on how many of these 24 ID studies were specifically derived from Nigeria [6]. To researchers' knowledge, there has been no published scoping review on ID research in Nigeria.

2. Study Characteristics—Description of the Articles Included

  • Five of the papers, i.e., [25][26][27][28][29], focused on family experiences and people with ID, where some of these papers explored the influence of a child with ID on family experiences such as marital stability or family quality of life;
  • Three articles [30][31][32] explored sexual practices and knowledge of pupils with ID;
  • Three papers [33][34][35] investigated the prevalence of autism spectrum disorder and behavioural patterns in children with ID;
  • Four papers [36][37][38][39] examined the social, school environment factors contributing to social development and language comprehension, as well as entrepreneurship training of people with ID.
The sample participants included parents and siblings of people with ID, i.e., [25][26][27][28][29]. Eight papers [30][31][32][33][34][35][36][37] included children and young people with ID, and the remaining two papers [38][39] included teachers without ID. Two [28; 33] of the fifteen included studies utilised qualitative methods but Ajuwon [25] did not clearly describe the method used. One of the 15 included papers employed both qualitative and quantitative methods [30] and the remaining twelve employed quantitative methods (see Supplementary File). Three different articles, i.e., [30][31][32], reported on different aspects of one main study by Aderemi and Pillay [30]; a similar approach was also seen in [33][34].

3. Themes

Four main themes from the included papers were identified: Caregiving experiences—this theme consisted of four subthemes: Interpersonal and emotional support, Marital experiences, Concerns related to the future of family members with ID and coping with a child with ID. Other themes were: Prevalence of neurodevelopmental and behavioural conditions in children and young people with ID; Sexual experiences of people with ID and Language comprehension, social and entrepreneurship skills and people with ID.

4. Theme I: Caregiving Experiences

This theme relates to the experiences of caregivers (parents and siblings) in the context of supporting a family member with ID. Five papers that met the inclusion criteria contained findings related to this theme [25][26][27][28][29]. Ajuwon [25] found that over one-third of respondents identified caregiver burden of a child with ID as the primary stressor in their lives. A majority of the parent participants of children with Down’s Syndrome (DS) in Ajuwon [25] experienced physical and financial burdens as stressful, and no “home care assistance” was available. Parents also reported negative attitudes from community members, which limited their access to social, community and economic resources [25]. Fifty-five percent of participants [25] reported problems with healthcare, accessibility and affordability being the primary issues. Participants reported resorting to unregulated herbal remedies from traditional healers for many ailments. Financial well-being was impacted by aging and retirement issues for older carers, such as poor-quality pensions that are not paid on a regular schedule, as well as the poor state of the Nigerian economy: unemployment and poor earnings. The stress experienced resulted in the loss of social activities, loss of employment and loss of independence for mothers who, were often the primary caregivers. Similarly, Oyedibe et al. [26] also found that mothers showed more caring responsibility of their child with ID compared to fathers, reflecting traditional Nigerian cultures.

4.1. Interpersonal and Emotional Support

The findings of four papers, i.e., [25][26][28][29], included results related to this subtheme. Family care burdens were reported to be alleviated by positive family attitudes, a caring experience, social support and resilience, e.g., [25][26]. Participants [25][26] reported strong, positive social and emotional relationships with nuclear and extended family members. A majority (79.0%) of the respondents in Eni-Olorunda, Ariyo and Lasode [28] said their parent-in-laws did not blame them for their child’s disability, and 81.0% also reported that their parent-in-laws did not ask the spouses to separate or divorce, with 54.3% saying their parent-in-laws supported them psychologically and emotionally. Participants in Ajuwon [25] reported that family QoL was improved by factors such as the growing independence of the disabled family member, improvement in their financial situation, good financial management and good-performing investments, as well as job promotions or new business opportunities. Moreover, having young family members without a disability in employment also enhanced the family finances. Onyedibe et al. [26] found that perceived social support was negatively associated with parenting stress; that is, the more social support parents had, the less parenting stress they reported. Personal resilience also negatively predicted parenting stress; therefore, the more resilience parents reported, the less stress they reported. Low resilience and high social support were associated with higher parenting stress, as was low reported resilience and low social support. Chukwu et al. [29] found that female participants reported that social support from friends and professionals helped in finding someone to listen to them and give them encouragement.

4.2. Marital Experiences

Only one paper revealed findings related to this subtheme. According to Eni-Olorunda et al. [28], a little over half of the parents (55.2%) said that their homes were like “heaven on Earth”, and 72.4% said that their families were closely knitted together, with a similar proportion of 70.5% saying that their spouses loved them unreservedly. More than half (65.7%) of the respondents said that the presence of a child with ID brought the family closer together, and 72.4% reported that it did not cause any rift between them and their spouses, with a large majority (79.0%) saying their spouses did not blame them for the birth [28]. Just under half of the respondents said that spending on the child with ID had worsened their finances, leading to friction in the marriage, while 55.2% said that this does not cause any friction [28]. Eni-Olorunda et al. [28] found no significant relationship between the educational status of respondents and marital stability after the discovery of the child with ID. Around one-fifth reported that their parent-in-laws said that the presence of the disabled child should lead spouses to separate or divorce [28]. However, three-quarters of parents [28] reported that siblings of children with ID love and accept them fully and were not in any way hostile to the child, and this further strengthened the marital relationship.

4.3. Concerns Related to the Future of Family Members with ID

Concerns expressed about the future well-being of family members with DS were rooted in the lack of support services and the increasing burden with aging, as services for people with disability were less available to adults, with limited access to vocational education and self-help training to promote independence. One mother of a teenage girl with DS in [25] (p. 38) remarked “I’m not sure what will become of my daughter now that she is getting to that age, when other teenage girls without disability are doing some type of work, or engaging in social activities with boys, and looking ahead to possible relationship and marriage. Frankly speaking, I do not know how to handle the situation, and I am not going to be around forever to look after her!” According to Ajuwon [25], although most of the parents have low incomes, their attitudes, as seen in their efforts to keep their children in special education centres, can be seen as positive; they are eager to give their children vocational training, as their main concern is their child’s survival and welfare when they, as the main carers, die. Services such as schools and private special education schools are costly in Nigeria, and finances are a major concern to parents.

4.4. Coping with A Child with ID

Three papers [25][27][29] reported findings related to this theme. For example, Chukwu et al. [29] found that parents reported different coping strategies. Some adopted a problem-focused coping strategy by seeking information from professionals, online and television programmes, and such knowledge on the different aspects of ID helped counter superstitious beliefs relating to the causes of ID. These participants were from educated backgrounds, with access to modern communication facilities. Other participants [29] used emotion-focused strategies; they became emotional during discussions about the causes of ID, sometimes “letting off steam” through suspicions and blaming others—especially marital partners—with spouses accusing each other of infidelity or curses due to the spouse’s previous wrongdoings. Feelings of resentment, bitterness and fear of the unknown had negative effects on the marital relationship. Siblings felt their family member with ID received preferential treatment from their mother. Other strategies found [29] included pretending the person with ID does not exist; keeping away from other people and “locking” away or “keeping” the child “out of public view” due to stigma, shame and negative attitudes and comments from the public.
Ajuwon and Brown [27] found that some parents held superstitious beliefs about disabilities. For example, parents commented that they associated their child’s disability with evil spirits, initiation into cults or family curses. Most of the parents, especially those with superstitious beliefs, reported that they had engaged in “shopping for a cure” via teaching hospitals, native doctors, churches or Imams. Ajuwon [25] further found family relationships were enhanced when they followed traditional, cultural values and actively practiced their religious faith. Caregivers received support from adult children without a disability, extended family and their religious communities. Participants [25] reported that receiving emotional and practical support, having religious faith, personal effort and a positive attitude that “things will get better” were associated with their current and perceived future well-being. Some parents [25] indicated that traditional superstitions associated with forms of disability were problematic and must be replaced with the modern understanding of disabilities. They identified religious and cultural leaders as the key to this shift in knowledge and practices. Other parents viewed education as a means of raising awareness of disabilities and eradicating misconceptions [25].
Chukwu et al. [29] found that some parents reported using spiritual- and religious-focused coping strategies, especially those with strong religious beliefs. These parents were active in a church, receiving ministration from the church to help them cope with stress and have a positive outlook for their child. Spiritual and religious coping strategies included: seeking help from their religious and spiritual community, counselling and referrals to institutions for the care of the child with ID. Spirituality and religious-based coping strategies were not all positive ones; others reported feelings of being punished, abandoned or resigned to the will of God, sometimes searching for spiritual cleansing. Other spiritual and religious coping strategies included seeking a native (traditional) doctor if they believed ID is caused by witchcraft and believing that a native doctor was helpful in calming hyperactivity and other behaviours of concern shown by the person with ID.

5. Theme II: Prevalence of Neurodevelopmental and Behavioural Conditions in Children and Yound People with ID

This theme outlines the findings related to other neurodevelopmental and behavioural conditions commonly exhibited by children and young participants with ID. Three papers, i.e., [33][34][35], included findings related to this theme. Atilola et al. [35] reported a significantly higher prevalence of neurological conditions (including epilepsy, slurred speech, dyskinesia; hemiparesis and quadriparesis) and ID in adolescents residing in a social welfare juvenile justice institution than in those who went to schools. Epilepsy was more prevalent in adolescents admitted to an institution due to neglect compared with those admitted due to offending behaviours. Bakare et al. [34] found that, of 44 children with ID, 21 were classified as having behavioural problems on the clinical scale of Strengths and Difficulties Questionnaire (SDQ). The SDQ employed [34] uses five clinical subscales (emotional symptoms, conduct problem, hyperactivity, peer problem, total difficulties and prosocial scales) to measure behaviour problems. Mild ID rather than more severe ID was associated with higher total difficulties scores, with males more likely to show hyperactivity behavioural problems compared to female participants. Bakare et al. [33] found that the prevalence of childhood autism among children with ID was 11.4% of the 44 children studied, with a male/female ratio of 4:1.

6. Theme III: Sexual Experiences of People with ID

This theme includes findings related to the sexual activities of participants with ID. Three papers, i.e., [30][31][32], included findings related to this theme. These papers appeared to be reporting findings from one large study involving 300 pupils (123 female, 177 male) from an ID special needs school and 300 mainstream learners (154 female, 146 male) aged 12–19 years and 12 teachers each from the ID school and mainstream school in Oyo State, Nigeria.
Aderemi and Pillay [30] found that one-quarter (26%) of the students with ID were engaging in sexual activity more frequently than students without ID—20% of the students with ID reported having multiple sexual partners. Female students with ID were shown to be at greater risk of sexual abuse than students without ID, and condom use with the last sexual activity was reported significantly less by students with ID and could be due to the reported lower availability of condoms to students with ID [30]. Aderemi and Pillay [31] reported that learners with ID abstained from sex less than their peers without ID, and girls with ID were almost four times more likely to report a history of rape than nondisabled girls. Aderemi, Pillay and Esterhuizen [32] found that significantly more learners with ID than nondisabled learners (62.2% versus 37.8%) reported having sexual experiences. Of the sexually experienced female ID participants, 28 (68.3%) reported a history of rape compared with 9 (2.9%) of the female participants without ID. Intellectual disability was significantly associated with lower HIV transmission knowledge involving casual sexual partners and the non-use of condoms during the last sexual activity.

7. Theme IV: Language Comprehension, Social and Entrepreneurship Skills and People with ID

This theme reports on findings related to aspects of young peoples’ education for adult living: improving English language comprehension, social skills and the need for entrepreneurship skills for people with ID in Nigeria. Four papers, i.e., [36][37][38][39], included findings related to this theme. Eni-Olorunda and Adediran [36] compared two experimental interventions (audio-taped and individualised instruction and a control group receiving education as usual) for improvement in English language comprehension in pupils with ID. Both experimental groups showed significantly higher English comprehension scores than the control group. The individualised instruction group showed the highest performance, followed by the audio-taped instruction group and the control group. The mean scores of the students with a low socioeconomic status were better than those with a high and medium socioeconomic status. Pre-test data were not reported in the paper.
Adeniyi and Omigbodun [37] reported improvement in the social skills of pupils with ID using an adapted version of the “Explore” social skills curriculum. Participants whose mothers had no formal education had lower mean social skills scores than those whose mothers had either a primary or post-primary education. No significant mean difference was found across the other demographic variables, such as age and gender. Isawumi and Oyundoyin [38] found a wide variety of independent variables, such as “parental educational qualification, parent employment, attitude of fellow students, teacher’s attitude, school library and sport facilities”, that correlated significantly with social skill deficits among students with ID. The participants in Olufemi et al. [39] found that students with ID and/or their teachers thought that persons with ID needed education in entrepreneurship skills and, following such education, that jobs needed to be provided for persons with ID. The sample [39] also thought that the facilities, infrastructure and financial support from the government were not adequate at schools for pupils with ID.

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