Psychosocial challenges of children with disabilities in Sekhukhune District, Limpopo province of South Africa: Towards a responsive integrated disability strategy

Disability, and everything it encompasses, presents major challenges to individuals, families and communities worldwide. Children with disabilities (CWD) are marginalised and excluded in most societies. Discrimination and prejudice towards CWD are compounded by poverty, lack of essential services and support and sometimes a hostile and inaccessible environment. Objectives: The study sought to examine the psychosocial challenges experienced by CWD in the Sekhukhune district of Limpopo province, South Africa. Based on the identified, articulated and expressed challenges, the study sought to recommend improvement of the existing Integrated National Disability Strategy (INDS) for greater responsiveness to the needs of CWD at both provincial and local levels. Method: The interpretivist qualitative mode of enquiry was the chosen methodology for this study. Phenomenology and descriptive research designs guided the study. Purposive sampling was employed, and data were collected from 36 participants using three triangulated methods: individual in-depth interviews, focus group discussions and key informant interviews. Thematic data analysis was used to analyze data. Results: The findings revealed that CWD in Sekhukhune experienced numerous challenges which affected their social functioning, development and general well-being. Aggravating factors included stigma, labelling and discrimination; disability-specific discrimination and bullying; exclusive education; sexual exploitation; lack of governmental support and poor implementation of disability-specific policies, amongst others. Conclusion: The provisions of the INDS to promote inclusion, integration, mainstreaming and equitable access to resources and services remained an ideal rather than a reality for CWD in Sekhukhune.

Oculocutaneous albinism in southern Africa: Historical background, genetic, clinical and psychosocial issues

Albinism is an inherited condition associated with significant depigmentation of the skin, hair and eyes. It occurs in every population with varying frequency, and narratives of people with albinism have been recorded since 200 BC. In southern Africa albinism is common, about 1 in 4000 people are affected, but it remains a poorly understood condition surrounded by myths and superstition. This article provides a historical background on oculocutaneous albinism (OCA) in southern Africa and presents relevant information from the literature regarding epidemiology, genetics and genetic counselling, health, psychosocial and cultural issues, and medical care. There are several recessively inherited types of OCA and a mutation, responsible for about 80%of South African variants, has been identified in OCA type 2. The physical characteristics associated with albinism, that is, sun-sensitive skin and low vision, can be managed. However, people with OCA in Africa also experience psychosocial issues, such as discrimination, because of the various superstitious beliefs and attitudes held in the community. Management should include medical care for health problems, appropriate adjustment of the schooling context and genetic counseling. In addition, widespread public awareness programs are required to increase the knowledge of the genetic causes of OCA and of the nature of genetic counselling, to address the negative attitudes in the community, to reduce the marginalization and stigmatization of people with albinism and to improve their quality of life.

Oculocutaneous albinism in southern Africa: Historical background, genetic, clinical and psychosocial issues

Albinism is an inherited condition associated with significant depigmentation of the skin, hair and eyes. It occurs in every population with varying frequency, and narratives of people with albinism have been recorded since 200 BC. In southern Africa albinism is common, about 1 in 4000 people are affected, but it remains a poorly understood condition surrounded by myths and superstition. This article provides a historical background on oculocutaneous albinism (OCA) in southern Africa and presents relevant information from the literature regarding epidemiology, genetics and genetic counselling, health, psychosocial and cultural issues, and medical care. There are several recessively inherited types of OCA and a mutation, responsible for about 80%of South African variants, has been identified in OCA type 2. The physical characteristics associated with albinism, that is, sun-sensitive skin and low vision, can be managed. However, people with OCA in Africa also experience psychosocial issues, such as discrimination, because of the various superstitious beliefs and attitudes held in the community. Management should include medical care for health problems, appropriate adjustment of the schooling context and genetic counseling. In addition, widespread public awareness programmes are required to increase the knowledge of the genetic causes of OCA and of the nature of genetic counselling, to address the negative attitudes in the community, to reduce the marginalisation and stigmatization of people with albinism and to improve their quality of life

Parents of children with disabilities: a systematic review of parenting interventions and self-efficacy

Background: An increasing body of empirical evidence suggests that early intervention has positive outcomes for parents of children with neurodevelopmental disabilities. Parental self-efficacy has been used as an outcome measure in some empirical studies; however, there is a lack of evidence of the impact of parent training programmes on parenting self-efficacy beliefs. Objectives: This systematic review sought to assess the effectiveness of parenting interventions to increase parental self-efficacy levels in parents of young children with neurodevelopmental disabilities.Method: We conducted a broad literature search, which included grey literature, such as dissertations and unpublished conference presentations, to identify all relevant prospective studies reporting on our study objective. Articles were selected for inclusion using predefined criteria and data were extracted onto a purposely designed data extraction form. Twenty-five articles met our search criteria. We extracted parenting self-efficacy scores before, and on, completion of parenting interventions and performed a meta-analysis using standardised mean difference. We also conducted a risk of bias assessment for all the included studies.Results: Parent training programmes resulted in a statistically significant increase in parental self-efficacy levels(standardised mean difference, 0.60 [95% confidence interval {CI}, 0.38­0.83]; I2, 74%) relative to baseline measurements. Parents of children younger than 5 years demonstrated the highest increase in levels of parental self-efficacy after parenting interventions. Furthermore, this review showed that psychologists and other healthcare practitioners are successfully able to implement training programmes that enhance parenting self-efficacy.Conclusion: Parent training programmes are effective in increasing parental self-efficacy in parents of children with neurodevelopmental disabilities

The relationship between social support and participation in stroke: a systematic review

This study examined the psychosocial predictors of poor sleep quality in parents caring for children with developmental disabilities. Methods Sixty-seven parents of children with developmental disabilities and 42 parents of typically developing children completed the Pittsburgh Sleep Quality Index, and measures of parental stress, child problem behaviors, and social support. Results Parents of children with developmental disabilities reported poorer sleep quality. Further, the majority of these parents met the established 'poor sleepers' criterion. The strongest predictor of poor sleep quality was parental stress. This finding withstood adjustment for a number of potential confounders. Conclusions Parental stress is associated with poor sleep quality in parents of children with developmental disabilities. The monitoring and management of sleep issues in these parental caregivers should be a priority for health professionals

Analysing disability policy in Namibia: an occupational justice perspective

Background: The Namibian disability policy of 1997 has not been reviewed for about 20 years, which has raised concerns with persons with disabilities and stakeholders in the fields of disability and rehabilitation. In March 2017, the government publicised its intention to review the policy. Thus, this study's purpose was to generate evidence that can contribute to the development of a more current disability policy that will promote occupational justice.Objectives: The aim of the study was to develop an alternative disability policy option for Namibia and to present outcomes and trade-offs using a policy analysis approach while applying the occupational justice framework to gather evidence.Method: A qualitative research design and Bardach's eightfold path approach to policy analysis were used. Critical disability theory provided the theoretical framework. The occupational justice framework was the conceptual framework for the study. Evidence from preceding phases of this study and appropriate literature was utilised to construct possible disability policy alternatives in Namibia, set evaluative criteria, project outcomes and confront trade-offs.Results: Three main disability policy alternatives emerged: access policy, support policy and universal coverage policy. Access policy had the fewest trade-offs, and the support policy had the most trade-offs in the Namibian context. Access policy was projected to foster occupational participation among persons with disabilities.Conclusion: Results have implications for selecting disability policy alternatives that promote occupational participation and justice among persons with disabilities in Namibia.Furthermore, the study has implications for advancing the practice of occupational justice in disability policy formulation

Characteristics of Children with Pervasive Developmental Disorders Attending a Developmental Clinic in the Western Cape Province; South Africa

Background. Little has been published on autism in Africa; and it is not known whether South African children present with the same characteristics and challenges as described internationally.Objectives. To describe the demographics; history; clinical features; co-morbidity and yield of aetiological investigations in children diagnosed with a pervasive developmental disorder (PDD).Methods. This was a retrospective review of medical records of children fulfilling Diagnostic and Statistical Manual of Mental Disorders; 4th edition; text revision (DSM-IV-TR) criteria for a PDD who attended a tertiary developmental clinic at Tygerberg Hospital; Western Cape; South Africa; over a 2-year period (2008 - 2010) Results. Fifty-eight children were included. The median age at diagnosis was 42 months (range 15 - 106 months); and 45 (77.6) were boys. Forty per cent had complex autism (dysmorphism with or without microcephaly); and 12.1were macrocephalic. Most children (72.4 were non-verbal (using fewer than 10 non-echoed words); and 89.0had behavioural problems as reported by caregivers. The diagnostic yield of investigations was low.Conclusion. The profile of children with PDD attending a tertiary hospital developmental clinic in the Western Cape revealed that a high proportion had severe language impairment; behavioural problems and complex autism

Behavioural problems among schoolchildren in Nigeria

Background: Behavioural problems among schoolchildren can pose a burden on families and society. Objective: To determine the prevalence and pattern of behavioural problems among children living in Uyo, a town in South-South Nigeria. Methods: A cross-sectional study was carried out among 572 pupils from six primary schools selected randomly from private and government schools in Uyo. Pupils with a normal IQ were selected using a systematic sampling method. The Rutter behavioural scale for teachers (B2) was completed by their teachers, and that for parents (A2) was completed by the parents. Student's t-test was used to compare pairs of means, frequencies were compared using the chi-square test, and p<0.05 was taken as significant. Results: According to the teachers' scale 132 pupils (23.1%) had scores within the range indicating behavioural problems, compared with 103 pupils (18.0%) on the parents' scale. This was statistically significant (χ2=19.8, p=0.001). Pupils in government and private schools had mean scores of 7.4 (standard deviation (SD) 6.41) and 5.12 (SD 6.26) and 7.29 (SD 5.84) and 6.96 (SD 5.76), respectively. Behavioural problems were more common among children in government schools and among those in the lower socio-economic class. Boys had significantly higher mean scores than girls, and both scales showed more boys to be disturbed. Antisocial behaviour was commonest among boys and older children. Conclusion: There is a high prevalence of behavioural problems among primary school children in Uyo, with a predominance of antisocial behaviour. The government needs o provide appropriate services to deal with this state of affairs

Clinical neuropsychiatric correlates and EEG findings among children with developmental disorders in Lagos, Nigeria

Abstract Objective: Developmental disorders with or without associated neuropsychiatric complications continue to be one of the major health problems in Africa. The grossly inadequate management/ rehabilitative facilities further worsen this. A prospective study aimed at finding the types of developmental disorders and associated neuropsychiatric complications among children aged ≤15 years that presented with developmental disorder in the study centers over 36 month study duration. Methods: The study was carried out in the paediatric and child psychiatric clinics as well as the Electroencephalographic (EEG) unit of two major health facilities in Lagos, Nigeria: Lagos University Teaching Hospital (LUTH) and Psychiatric Hospital, Yaba, Lagos. For each subject, socio-demographic data was obtained and appropriate clinical evaluation was carried out to obtain the necessary data and clinical diagnoses. Furthermore, each of the subjects had waking EEG recording using 20-channel computerized Medelec® EEG machine. The EEG interpretation was blinded to the clinical history of the subjects. Results: Overall, one hundred and eleven (111) subjects were evaluated over the 36 month study period. The cohort was made up of 63 (56.8%) males and 48 (43.2%) females. The mean age was 4.8 (±3.9) years, with most subjects falling in the age group of 0-5 years(69.4%). Mixed specific developmental disorders were most common (55%) followed by that of specific developmental disorders of speech and language (34.2%). Forty-one (36.9%) subjects suffered from one or more types of complications, with seizure, 22(19.8%) being the most common. The waking EEG recording was normal in 22 (19.8%) subjects; while abnormal epileptiform activities were found in 85 (76.6%) of recordings. No statistically significant relationship existed between EEG abnormalities and the factors of age and clinical diagnoses (i.e developmental abnormalities). Conclusion: The small number of subjects in this study is a major hindrance to drawing a general conclusion. However, it has been shown that a number of the cohort in addition to their developmental disorders suffered from such complications as seizures, hyperactivity etc. Furthermore, a significant proportion had EEG abnormalities of the epileptiform types possibly reinforcing the previously known fact of prevalent subtle brain damage among African children. The need for preventive health care is therefore emphasized