Resources search

The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province

TIGERE, Brian
MAKHUBELE, Jabulani C.
September 2019

Expand view

Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.

 

Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.

 

Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.

 

Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.

 

Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.

 

 

African Journal of Disability, Vol 8, 2019

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

KYEREMATENG, Joana D.A
EDUSEI, Anthony
DOGBE, Joslin A.
OPUKU, Maxwell P.
NKETSIA, William
HAMMOND, Chrales
AFRIYIE, Sally A.
September 2019

Expand view

Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.

 

Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.

 

Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.

 

Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.

 

Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

 

 

African Journal of Disability, Vol 8, 2019

‘We only got Coca-Cola’: Disability and the paradox of (dis)empowerment in Southeast Nigeria

NWOKORIE, Okechukwu V.
DEVLIEGER, Patrick J.
2019

Expand view

Background: Empowerment is the generic name for support services for persons with disability in Nigeria. In it, the elites of the society play leading roles. Special events such as anniversaries, Christmas seasons, wealthy people’s birthdays, investiture of new titles and campaigns before general elections often provide occasions for empowerment programmes.

 

Objectives: This article explores discourses of empowerment of persons with disability in Southeast Nigeria. We concentrate on the relation between local elites and the disability community and how it impacts our understanding of empowerment. Conceptualising empowerment as worldmaking, and disability as something that is ambiguous, we challenge the assumption that the aim of empowerment of disabled people is to improve their (disabled people’s) quality of life.

 

Method: This article relies on research data (collected between January 2014 and January 2017) comprising 72 interviews and participant observations from 27 persons with disability, and 13 social workers and senior government officials.

 

Results: We conclude that discourses of empowerment of disabled people frame disability as loss and tend to conceal the personal stories and survival operations of disabled people.

 

Conclusion: Empowerment discourses ironically provide the platform for local power elites to ‘ride’ to fame on the backs of disabled to extend their influence in society. In the current neoliberal environment of unequal access to opportunities, disabled people must ‘play along’ as a survival strategy. Our qualitative data provide opportunities to reflect on the tensions between the ‘local and the global’, thus indicating how disability issues intersect with other wider questions.

 

 

African Journal of Disability, Vol 8, 2019

Communication Disability in Fiji: Community Cultural Beliefs and Attitudes

HOPF, Suzanne C
MCLEOD, Sharynne
MCDONAGH, Sarah H
RAKANACE, Epenisa N
2017

Expand view

Purpose: Beliefs about communication disability vary according to the cultural context, and influence people’s attitudes and help-seeking behaviour. Little is known about Fijians with communication disability or the communities in which they live, and specialist services for people with communication disability are yet to be established in Fiji. An understanding of Fijian beliefs about the causes of communication disability and attitudes towards people with communication disability may inform future service development.

 

Method: An interpretivist qualitative research paradigm and the International Classification of Functioning, Disability and Health (ICF) framework informed this project’s design. Scenarios of adults and children with communication disability were presented to 144 participants, randomly sampled across multiple public spaces in two Fiji cities. Thematic analysis of responses to 15 survey questions revealed participant beliefs about the causes and attitudes towards people with communication disability.

 

Results: Three clusters describing perceived causes emerged from the analysis - internal, external, and supernatural. Major clusters across child and adult scenarios were similar; however, response categories within the scenarios differed. Community attitudes to people with communication disability were predominantly negative. These community attitudes influenced individual participants’ beliefs about educational and employment opportunities for Fijians with communication disability.

 

Conclusion: Determination and acknowledgement of individuals’ belief systems informs development of culturally appropriate intervention programmes and health promotion activities.

 

Implications: Speech-language pathologists and other professionals working with Fijian communities should acknowledge community belief systems and develop culturally-specific health promotion activities, assessments, and interventions.

Knowledge and Beliefs about Ear and Hearing Health among Mothers of Young Children in a Rural Community in South India

NARAYANSAMY, M
RAMKUMA, V
NAGARAJAN, R
2014

Expand view

Purpose: To study the knowledge and beliefs about ear and hearing healthcare among mothers from a rural community.

 

Method: In 1 week, 6 focus group discussions were conducted across 6 villages of a district in Tamil Nadu in southern India. The participants were 60 mothers who had children below 5 years of age.

 

Results: Mothers in this rural community had information about some aspects of ear and hearing healthcare. They were aware that use of hairpins and safety- pins to clean ears was harmful; they were knowledgeable about ways to identify hearing ability (child responds to name call, verbal instructions, and startles at loud sounds); and, conditions like consanguinity and malnutrition of expectant mothers were recognised as risk factors for hearing loss. However, misconceptions also existed. The practice of pouring herbal juices to remove insects in the ear continued; there was the perception that all children with a hearing problem were “deaf”, and a lack of awareness about the possibility of partial/unilateral hearing loss. Regarding the age of identification, mothers believed that a child’s ability to speak and the ability to hear was pertinent to assess hearing. None of the mothers related normal speech development to normal hearing.

 

Conclusion: For the success of a community-based hearing screening programme, it is important to utilise the existing knowledge of the mothers, and simultaneously attempt to fill in gaps in knowledge and clarify misconceptions. These measures will facilitate greater compliance from the community in achieving the goals of early identification and early intervention for problems of hearing loss.

Knowledge of, beliefs about and attitudes to disability: implications for health professionals

MASASA, T
IRWIN-CARRUTHERS, S
FAURE, M
2014

Expand view

Background: South Africa is a multicultural, multiracial and multilingual nation with many different values, traditions and cultural practices. Different belief systems may give rise to different attitudes and practices relating to disability, which may impact on rehabilitation. The purpose of this study was to investigate the knowledge, attitudes and beliefs relating to disability in three broad cultural groups in the Western Cape.

 

Method: Sixty primary caregivers were interviewed by using a knowledge, attitude and belief (KAB) survey in a structured interview format. Probability and non-probability (systematic and purposive) sampling were used. The study used both quantitative and qualitative methods.

 

Results: While caregivers from coloured and white communities generally had become acquainted with disability from an early age, caregivers in black communities often only learnt about disability following the birth of a disabled child. All caregivers had only a rather rudimentary knowledge of the causes of disability, but held positive attitudes towards people with disabilities and their integration into society. The qualitative data showed some differences in beliefs between the three groups in relation to the causes of disability and the need for rehabilitation. The data also revealed negative experiences across the groups in relation to education and the availability of transport, particularly amongst caregivers from black and coloured communities.

 

Conclusions: Health professionals need to understand the culture, values, beliefs and expectations of their clients when providing rehabilitation services within a community-based model. There appears to be a need for improved disability awareness in schools and amongst transport service providers.

Social Skills Training of Children with Learning Disability

BHAN, S
FAROOQUI, Z
2013

Expand view

Purpose: The ability to recognise emotions in oneself and in others is a fundamental prerequisite to function successfully in the social world. Emotion recognition deficit in people with learning disability may therefore be an important contributory factor to deficits in social skills and poor social adaptation. This study aimed to examine the level of emotional understanding in students with learning disabilities (LD).

 

Method: A pre-test, post-test equivalent groups design was adopted for this study. The focus was on identification of emotions through verbal and pictorial situations, and the appropriate expression of emotions. Training was provided to enhance the emotional understanding of students through the use of ‘I C ME’ module. The 6 emotions addressed in this study were anger, excitement, embarrassment, jealousy, love and anxiety. 30 children with LD, in the age group of 9-12 years, were selected for the study.

 

Results: It was seen that while children with LD had difficulty in the identification of an emotion, they found it more difficult to express the emotion in a socially appropriate way. The post-test results indicated that the training provided to the students significantly improved their emotional understanding.

 

Conclusions: The students learnt about the 6 emotions (anger, excitement, embarrassment, love, jealousy, and anxiety), the vocabulary associated with these emotions, and also the appropriate way to express, self-monitor and self-regulate each emotion.

 

Limitations: Intervention was done for only 6 emotions

E-bulletin