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Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation

GONA, Joseph K.
NEWTON, Charles
HARTLEY, Sally
BUNNING, Karen
July 2020

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Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya.

 

Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status.

 

Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths–weaknesses–opportunities–threats to review the groups at the end of the 10-month set-up period.

 

Results: Recruitment resulted in registration of 254 participants to 18 groups – two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in ‘merry-go-round’ activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats.

 

Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.

 

 

African Journal of Disability, Vol 9, 2020

A university’s response to people with disabilities in Worcester, Western Cape

MÜLLER, Jana V.
NED, Lieketseng
BOSHOFF, Hananja
October 2019

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Background: The call for institutions of higher education to foster interaction with communities and ensure training is responsive to the needs of communities is well documented. In 2011, Stellenbosch University collaborated with the Worcester community to identify the needs of people with disabilities within the community. How the university was engaging with these identified needs through student training still needed to be determined.

 

Objectives: This study describes the engagement process of reciprocity and responsivity in aligning needs identified by persons with disability to four undergraduate allied health student training programmes in Worcester, Western Cape.

 

Method: A single case study using the participatory action research appraisal methods explored how undergraduate student service learning was responding to 21 needs previously identified in 2011 alongside persons with disability allowing for comprehensive feedback and a collaborative and coordinated response.

 

Results: Students’ service learning activities addressed 14 of the 21 needs. Further collaborative dialogue resulted in re-grouping the needs into six themes accompanied by a planned collaborative response by both community and student learning to address all 21 needs previously identified.

 

Conclusion: Undergraduate students’ service learning in communities has the potential to meet community identified needs especially when participatory action research strategies are implemented. Reciprocity exists when university and community co-engage to construct, reflect and adjust responsive service learning. This has the potential to create a collaborative environment and process in which trust, accountability, inclusion and communication is possible between the university and the community.

 

 

African Journal of Disability, Vol 8, 2019

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

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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

Perceptions and satisfaction of caregivers regarding rehabilitation services from selected rehabilitation centres in the Western Cape

MLENZANA, Nondwe B.
EIDE, Arne H.
FRANTZ, Jose M.
2018

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Background: Understanding caregivers’ views on rehabilitation services is important as it may assist in informing healthcare services and patient management.

 

Objectives: The aim of this study was to explore caregivers’ perceptions and satisfaction regarding rehabilitation services in the Western Cape, South Africa, and to inform clinical practice and policy in this emerging field.

 

Method: This study used a descriptive, qualitative design using in-depth interviews with conveniently selected participants. Interviews were conducted with 13 caregivers of patients with: amputations (3), cerebrovascular accidents (5) and neuromuscular disorders (5). Thematic content analysis was conducted with the transcripts.

 

Results: Four key themes emerged, which were (1) financial difficulties, (2) caregiver and therapist relationships, (3) facility management and (4) caregiver experience with service delivery.

 

Conclusion: Based on the participants’ feedback, the rehabilitation services seem to be meeting the basic rehabilitation needs of the patients; however, the needs of the caregivers require attention.

‘I felt pain. Deep pain…’: Experiences of primary caregivers of stroke survivors with aphasia in a South African township

MASUKU, Khetsiwe P.
MOPHOSHO, Munyane
TSHABALALA, Muziwakhe
2018

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Background: Aphasia is an acquired impairment in language and in the cognitive processes that underlie language. Aphasia affects the quality of life of the person with aphasia (PWA) and his or her families in various ways in diverse contexts and cultures. It is therefore important that speech language therapists understand how different contextual and cultural factors may mediate experiences.


Purpose: The aim of the study was to describe the caregiving experience of female caregivers of PWA residing in Tembisa, a township situated in the east of Johannesburg.


Method: Qualitative, semi-structured interviews were conducted with primary caregivers of PWA. Purposive sampling was used to recruit 14 primary caregivers of PWA who were daughters, daughters-in-law or wives of the PWA. The interviews were conducted in participants’ first language and analysed by the researcher, who is proficient in isiZulu. Data were analysed according to the principles of thematic analysis.


Results: Findings indicated that caregivers are unfamiliar with aphasia and the support available to them. Participants experienced frustration and found communication to be challenging owing to their lack of communication strategies. The participants’ experiences reflected their context-specific experiences, such as feminisation of caregiving, barriers to healthcare, the influence of low health literacy and contextual perspectives on stroke and aphasia.


Conclusions: Contextual factors of caregivers in Tembisa have an influence on the experiences between caregivers and PWA, the feelings of individuals and families and health-seeking behaviours of individuals and families.

Communication rehabilitation in sub-Saharan Africa: The role of speech and language therapists

WYLIE, Karen
MCALLISTER, Lindy
DAVIDSON, Bronwyn
MARSHALL, Julie
2018

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Background: Workforce factors present a significant barrier to the development of rehabilitation services for people with communication disabilities in sub-Saharan Africa (SSA). Exploring how the work of speech and language therapists (SLTs) in the region is organised and delivered can provide insight into existing services, areas for future workforce development and improved rehabilitation access for people with communication disability.


Objectives: This paper describes the employment and service provision patterns and work roles of a sample of SLTs in SSA.


Method: A broad, purpose-designed, mixed-methods survey was designed to collect data from SLTs living in Anglophone countries of SSA. Descriptive statistics and qualitative content analysis were undertaken. This paper reports on a subset of data from the wider survey.


Results: A description of the employment and work roles of the 33 respondents to the survey and characteristics of their service users is presented. SLTs were commonly employed within private and not-for-profit sectors and frequently worked in temporary jobs. SLTs engaged in a range of work roles, including capacity building and training others. Services were provided by SLTs across age ranges, health conditions and settings, with paediatric, urban services commonly reported. Costs for service users and urban-centred services give indications of barriers to service access.


Conclusion: Knowledge of the way in which speech and language therapy services are organised and provided has the potential to shape the development of communication disability rehabilitation in SSA. This research has identified a range of issues requiring consideration as the profession develops and grows.

Community stakeholders’ perspectives on the role of occupational therapy in primary healthcare: Implications for practice

NAIDOO, Deshini
Van WYK, Jacqueline
JOUBER, Robin
2017

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Background: Primary healthcare (PHC) is central to increased access and transformation in South African healthcare. There is limited literature about services required by occupational therapists in PHC. Despite policy being in place, the implementation of services at grassroots level does not always occur adequately.

 

Objectives: This study aimed at gaining an understanding of the challenges of being disabled and the services required by occupational therapists (OTs) in rural communities in order to better inform the occupational therapy (OT) training curriculum. 

 

Method: An exploratory, descriptive qualitative design was implemented using purposive sampling to recruit 23 community healthcare workers from the uGu district. Snowball sampling was used to recruit 37 members of the uGu community, which included people with disability (PWD) and caregivers of PWDs. Audio-recorded focus groups and semi-structured interviews were used to collect data, which were thematically analysed. Ethical approval was obtained from the Biomedical and Research Ethics Committee of the University of KwaZulu-Natal (BE248/14).


Results: Two main themes emerged namely: firstly, the challenges faced by the disabled community and secondly appropriate opportunities for intervention in PHC. A snapshot of the social and physical inaccessibility challenges experienced by the community was created. Challenges included physical and sexual abuse, discrimination and marginalisation. Community-based rehabilitation and ideas for health promotion and prevention were identified as possible strategies for OT intervention.
Conclusion: The understanding of the intervention required by OT in PHC was enhanced through obtaining the views of various stakeholders’ on the role. This study highlighted the gaps in community-based services that OTs should offer in this context.
 

Disability inclusion in higher education in Uganda: Status and strategies

EMONG, Paul
ERON, Lawrence
2016

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Background: Uganda has embraced inclusive education and evidently committed itself to bringing about disability inclusion at every level of education. Both legal and non-legal frameworks have been adopted and arguably are in line with the intent of the Convention on the Rights of Persons with Disabilities (CRPD) on education. The CRPD, in Article 24, requires states to attain a right to education for persons with disabilities without discrimination and on the basis of equal opportunities at all levels of education.


Objectives: Despite Uganda’s robust disability legal and policy framework on education, there is evidence of exclusion and discrimination of students with disabilities in the higher education institutions. The main objective of this article is to explore the status of disability inclusion in higher education and strategies for its realisation, using evidence from Emong’s study, workshop proceedings where the authors facilitated and additional individual interviews with four students with disabilities by the authors.


Results: The results show that there are discrimination and exclusion tendencies in matters related to admissions, access to lectures, assessment and examinations, access to library services, halls of residence and other disability support services.

 

Conclusion: The article recommends that institutional policies and guidelines on support services for students with disabilities and special needs in higher education be developed, data on students with disabilities collected to help planning, collaboration between Disabled Peoples Organisations (DPO’s) strengthened to ensure disability inclusion and the establishment of disability support centres.

Being black in a white skin: Beliefs and stereotypes around albinism at a South African university

PHATOLI, Relebohile
BILA, Nontembeko
ROSS, Eleanor
2015

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Background: Partly because of the legacy of apartheid, and despite being a constitutional democracy, South Africa continues to be a deeply divided society, particularly along racial lines. In this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation.

 

Objectives: The study endeavoured to explore the beliefs and practices regarding albinism within a South African university, and the availability of support services.

 

Method: The research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. Interviews were conducted with five students with albinism and 10 students without albinism.

 

Results: Findings confirmed the existence of myths and stereotypes regarding albinism. Students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition.

 

Conclusion: People with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. Results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof.

Knowledge and use of contraceptive methods amongst deaf people in Ghana

MPRAH, Wisdom K
2013

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Background: Persons with disabilities in general face serious barriers to sexual and reproductive health (SRH) information and services due to institutional and attitudinal barriers. However, because deaf people have unique communication and linguistic needs, which are often misunderstood or ignored, they face greater barriers than other persons with disabilities. Whilst available data indicated that there is a wide gap between knowledge and usage of contraceptive amongst Ghanaians, little is known about the level of contraceptive knowledge and usage amongst deaf people.

 

Objectives: The objective of the study was to investigate the level of knowledge and use of contraceptive methods amongst deaf people in Ghana with the aim of understanding their contraceptive behaviour and to improve access.

 

Method: The study was a participatory SRH needs assessment utilising a two-phase, sequential, mixed methods design. The study included 179 participants, consisting of focus groups with seven executives of Ghana National Association of the Deaf (GNAD), 10 male deaf adults, and 9 deaf female adults. A total of 152 deaf people, made up of students, women, and men participated in a survey, whilst one hearing person served as a key informant.

 

Results: The findings of the study indicated that of the 13 methods shown in the survey, only three were known to about 70% of the adults and 60% of the students. Level of knowledge of the remaining nine methods was low.

 

Conclusion: Clear and effective policies are needed to guide the provision of SRH information and services for deaf people in Ghana.

Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

ALDERSEY, Heather M
2012

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When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

Accessing community health services: challenges faced by poor people with disabilities in a rural community in South Africa

GRUT, Lisbet
MJI, Gubela
BRAATHEN, Stine H
INGSTAD, Benedicte
2012

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Poor people with disabilities who live in poor rural societies experience unique problems in accessing health services. Their situation is influenced by multiple factors which unfold and interplay throughout the person’s life course. The difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. The barriers are rooted in a life in poverty, upheld and maintained by poverty-reinforcing social forces of the past and the present, and reinforced by the lack of the person’s perspective of the health services. This article explores how difficulties may interact and influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. The study reveals that non-compliance is not necessarily about neglect but could as well be a matter of lived poverty. The study was based on in-depth interviews with people with disabilities and family members, and semi-structured interviews with health personnel. The data analysis is contextual and interpretive. When offering health services to people with disabilities living in resource-poor settings, services should take into consideration the person’s history, the needs, and the resources and abilities of the family group. Rethinking access to health services should transcend a narrow medical institutionalization of health professional’s training, and include a patient’s perspective and a social vision in understanding and practice. Such rethinking requires health service models that integrate the skills of health professionals with the skills of disabled people and their family members. Such skills lie dormant at community level, and need to be recognized and utilized.

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