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What are the most effective strategies for strengthening health systems for disability inclusive development? - Evidence brief

MACTAGGART, Islay
February 2021

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Health system strengthening refers to initiatives that improve one or more functions of health systems, leading to better health. There is a large body of evidence on what works to strengthen health systems in low- and middle-income countries (LMICs), much of which is aligned to the World Health Organization (WHO) health system building blocks (service delivery; health workforce; information; medical products, vaccines and technologies; financing; and leadership/governance). Despite the fact that some people with disabilities have additional health needs, and many face additional barriers to accessing healthcare, inclusion of people with disabilities is largely missing from this evidence base. Separately, a smaller evidence base exists on increasing the effectiveness of specific health-related services targeting people with disabilities, such as health-related Community Based Rehabilitation (CBR), rehabilitation services more broadly, and mental health services. This second evidence base is less closely aligned to the building blocks. Reviewing these outputs in parallel goes some way towards identifying effective strategies for strengthening health systems for disability inclusive development.

The role of rehabilitation care workers in South African healthcare: A Q-methodological study

GAMIET, Shamila
ROWE, Michael
October 2019

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Background: The South African Department of Health identified the need to train a new cadre of community health worker (CHW) in the field of rehabilitation as part of their 2030 Health Plan that aims to improve primary healthcare (PHC) and community-based rehabilitation (CBR). Community health workers can be effectively utilised in CBR if their role is understood and their potential is not limited by professional protectionism and scepticism. A clear understanding of the scope of practice of a new cadre will minimise resistance by health professionals.

 

Objectives: The aim of this study was to explore rehabilitation health professionals’ perception of the role of the new cadre, called rehabilitation care workers (RCWs), in South African healthcare.

 

Methods: Q-methodology was used to gather and interpret the data. A convenient sample of 16 health professionals participated in the study. Participants ranked statements about the role of the RCWs from strongly agree to strongly disagree. Data were entered into PQMethod software program for statistical and factor analysis.

 

Results: Two factors emerged. Participants loading onto Factors 1 and 2 were of the opinion that RCWs’ role would be to strengthen PHC and CBR and to promote participation of people with disabilities (PWD) in intermediate care and community.

 

Conclusion: Rehabilitation health professionals’ positive perception of the new cadre is encouraging so that it could ensure their effective utilisation in CBR. Rehabilitation care workers were perceived as capable of enhancing the lives of PWD by ensuring inclusive development.

 

 

African Journal of Disability, Vol 8, 2019

The effect of a serious game on empathy and prejudice of psychology students towards persons with disabilities

OLIVIER, Linda
STERKENBURG, Paula
Van RENSBURG, Esmé
2019

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Background: Much has been done regarding the promotion of equality in rights in terms of legislation, but persons with disabilities remain marginalised in society. Negative attitudes and prejudice contribute towards numerous challenges for persons with disabilities.

 

Objectives: This study investigated the level of empathy and prejudice of students towards persons with disabilities, and the effect of the use of a serious game to enhance empathy and reduce prejudice.

 

Method: A randomised controlled experiment with pre-test, post-test and follow-up test was used. Availability sample (N = 83) of psychology university students (22% males; 78% females) was divided into an experimental group that played the serious game The World of Empa and two control groups. The first control group received texts on case studies and information on reacting in a sensitive and responsive way, and the second control group received no intervention.

 

Results: Participants have average levels of empathy (score: 32 to 52) and strong prejudice (score: 0.08 to −0.87) towards persons with disabilities. The intervention results in a slight short-term effect for prejudice and sub-scale measurements of empathy. A slight improvement was noted in participants’ ability to transpose themselves imaginatively into the experience of disabled characters.

 

Conclusion: The findings contribute to the understanding of empathy as a dynamic component that can be positively influenced by, for example, a serious game. These results have teaching implications on the facilitation of empathy. The short-term effect on empathy and prejudice towards persons with disabilities may contribute to bridge the inequality experienced by persons with disabilities.

 

African Journal of Disability, Vol 8, 2019

Current access and recruitment practices in nursing education institutions in KwaZulu-Natal: A case study of student nurses with disabilities

MOODLEY, Selvarani
MCHUNU, Gugu
2019

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Background: While institutions of higher education may have increased access and accommodation for students with disabilities, institutions primarily providing nurse training in South Africa do not mirror the same practice.

 

Objectives: Notwithstanding the integration of disability policies enacted in South Africa in 2010, a majority of people with disabilities are still excluded from the activities of society equally applicable to nursing education. This article describes the current access and recruitment practices for student nurses with disabilities (SNWDs) in nursing education institutions in KwaZulu-Natal to provide baseline data, which is largely absent in nursing institutions.

 

Method: A concurrent mixed-method design using a multiple embedded case study approach was employed. This article presented phase 1 of the study, a quantitative survey of all private nursing education institutions (n = 27), complemented by individual, in-depth interviews with SNWDs (n = 10). Quantitative data were analysed using SPSS version 24, with a response rate of 78% (n = 21), whereas qualitative data were analysed using content analysis.

 

Results: The findings revealed that the majority of private NEIs lack policy guidelines for recruiting SNWDs; however, other means of guidance is sought, for example, using the technical assistance. While NEIs were willing to recruit SNWDs, access to clinical sites, lectures, support systems and reasonable accommodation was challenging.

 

Conclusion: Private NEIs are providing an inclusive education to all students including those with disabilities; however, they still have a long way to go in meeting the needs of SNWDs with regards to support and accommodation.

 

African Journal of Disability, Vol 8, 2019

The intersection of disability and food security: Perspectives of health and humanitarian aid workers

QUARMBY, Candice A.
PILLAY, Mershen
2018

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Background: Most people with disabilities the world over can be found in the Majority (or ‘economically developing’) World. This is also where most of the world’s hungry and malnourished are found. We argue that the intersectionality between disability and nutrition may best be understood through a food security framework, and we position all people living with disability, including those experiencing feeding and swallowing disabilities, as at risk for food insecurity, especially those living in humanitarian emergency contexts.

 

Objectives: This study aimed to explore and describe the knowledge and experience of humanitarian aid workers (HAWs) and health care professionals (HCPs) in food assistance contexts with regard to the nutrition and food security of people living with disabilities.

 

Method: In this exploratory, descriptive study, 16 participants with experience in sub-Saharan Africa and Southern Asia participated in an online survey. Three survey participants with extensive experience were also interviewed. Data analysis involved descriptive statistics and thematic content analysis.

 

Results: Results revealed that participants had generally low levels of exposure to and experience with disability, including swallowing and feeding disorders.

 

Conclusions: Reduced knowledge of HAWs and HCPs regarding disability and the lack of professionals such as speech–language therapists, who manage disability-specific issues such as feeding and swallowing disorders, may affect the food security of people living with disabilities in food assistance contexts.

Community health workers lensed through a South African backdrop of two peri-urban communities in KwaZulu-Natal

WHITE, Meghan S.
GOVENDER, Pragashnie
LISTER, Helga E.
2017

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Background: As the South African government re-engineers primary healthcare (PHC), the need for additional information on stakeholders involved in the process has emerged. Of these are community health workers (CHWs), who have been identified as central to PHC success.


Objectives: To profile the current CHWs within KwaDabeka and Clermont in KwaZulu-Natal, to describe their roles and to explore the barriers and enablers influencing their service delivery.


Method: A convergent mixed methods design was employed with a sample of CHWs with the use of a survey (n = 53) and two focus groups (n = 10) and semi-structured interviews with four ward councillors (n = 4). Data were analysed statistically and thematically.


Results: The profile of CHWs reflected only women with a mixed age range and a majority of 59% who had not completed formal schooling. General work experience as a CHW varied. There were diverse opinions expressed towards the CHW role which related to their job title and identity, supervision, remuneration, growth pathways and psychological and emotional issues. Whilst the National Community Health Worker Profile Framework was established for the CHW programme, there are several factors lacking in the current CHW programme such as a formal growth pathway or formal training to align the CHWs with the National Qualifications Framework.


Conclusion: The study findings are essential for the monitoring and evaluation as well as development and refinement of policies that will assist in ensuring adequate rollout of PHC with CHWs.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

Gendered experiences of physical restraint on locked wards for women

FISH, Rebecca
HATTON, Chris
2017

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Physical restraint is used in inpatient services for people with intellectual disabilities as a way of holding a person to avoid injury. This article uses data from an ethnographic study in a locked unit in the north of England to explore women’s experiences of physical restraint using a feminist disability studies analysis. Data consists of field notes as well as interviews with 16 of the women who had experienced restraint, and 10 staff who worked with them. The women gave insights into the gendered phenomenon of restraint in light of their past experiences of violence. The authors argue that restraint is used with women to encourage passivity at times when more relational and therapeutic methods could be used. The article offers recommendations for alternative strategies that services can encourage.

Work Ability Index: Validation and Model Comparison of the Malaysian Work Ability Index (WAI)

LAVASANI, Sobhan
WAHAT, Nor Wahiza Abdul
2016

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Purpose: The study aimed to (1) measure the Work Ability of employees with disability; (2) assess the factor structure of different potential models of Work Ability Index (WAI) for employees with disability; and (3) identify the best factor structure of Work Ability Index for employees with disability in the Malaysian cultural context.

 

Methods: Data was collected using the Work Ability Index (WAI) translated into Malay language. The study sample consisted of 275 employees with physical disability, from both public and private sectors across Malaysia. Descriptive statistics were calculated using IBM SPSS 20 to evaluate the score of each subscale and the cumulative index of Work Ability among employees with disability. Confirmatory factor analysis (CFA) was conducted using IBM SPSS AMOS 21 to assess the factor structure of WAI and evaluate the validity of the proposed models for employees with disability.

 

Results: The WAI scores were 29.5% poor, 35.3% moderate, 28.7% good and 6.5% excellent. In the validation process, a non-orthogonal two dimensional structure was identified. In this model of WAI, the subscales were attributed to two factors: (1) subjective Work Ability factor that consisted of subscales 1, 2 and 7; and (2) health-related Work Ability factor, comprised of subscales 3, 5, 4 and 6. These two factors were positively correlated, which indicates that employees with disability who exhibit positive subjective Work Ability tend to also report positive health- related Work Ability.

 

Conclusion: This study has provided the first Malay version of WAI and has paved the way for future studies on work ability among employees with disability. The WAI translation has been validated among employees with disability and has shown adequate psychometric properties, thus making it suitable to investigate the associations between aspects of work and their impact on the health of employees with disability. 

Attitudes of health service providers: the perspective of Persons with Disabilities in the Kumasi Metropolis of Ghana

BADU, Eric
OPOKU, Maxwell P
APPIAH, Seth C Y
2016

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Introduction: Awareness of disability issues has gained considerable interest by advocacy groups in recent years. However, it is uncertain whether attitudes and perceptions of all service providers and society have adjusted accordingly towards the health care of people with disabilities. This study sought to examine the attitudes of health providers from the perspective of people with disabilities in the Kumasi Metropolis.


Methods: A cross-sectional study using semi-structured questionnaires was conducted with people with disabilities (with physical, hearing and visual impairments,) in the Kumasi Metropolis. The study used a multi-stage sampling involving cluster and simple random sampling to select 255 respondents split amongst the following five clusters of communities; Oforikrom, Subin, Asewase, Tafo and Asokwa. Data were analysed using STATA 14 and presented in descriptive and inferential statistics.


Results: The study found that 71% of the respondents faced some form of discrimination including the use of derogatory remarks, frustration and unavailable required services on the basis of their disability, the type of services they need and the location. Women were 3.89 times more likely to face discrimination; Adjusted odds ratio (AOR) = 3.89 (95% confidence interval [CI]; 1.41, 10.76), and visually impaired was more likely to be discriminated at the facility compared with physical disability; AOR = 5.05 (95% CI; 1.44, 17.65). However, respondents with some educational qualification and those who stayed with their family members were less likely to face discrimination; AOR = 0.08 (95% CI; 0.01, 0.39).


Conclusion: The study recommends the provision of in-service training for service providers to update their knowledge on disability issues and improve access to services for people with disabilities.
 

Discourses of service user involvement in meeting places in Norwegian community mental health care: a discourse analysis of staff accounts

YNNESDAL HAUGEN, Lill Susann
ENVY, Andreas
BORG, Marit
EKELAND, Tor-Johan
ANDERSSEN, Norman
2016

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In previous research, meeting places have been favourably addressed by service users, but they have also been contested as exclusionary. In this participatory explorative study, we sought to perform a contextual analysis of meeting places in Norway based on a discourse analysis of three focus group discussions with 15 staff members. We asked the following question: how do meeting-place employees discuss their concrete and abstract encounters with service users and their experiences? We focused on service user involvement, which was largely analysed as neoliberal consultation and responsibilisation. Service users were positioned as resisting responsibility trickling down and defending staffed meeting places. Social democratic discourse was identified in the gaps of neoliberal discourse, which is noteworthy given that Norway is a social democracy. This relates to global concerns about displacements of democracy. We suggest that meeting places appear to hold the potential for staff and service users to collaborate more democratically.

Using participatory and creative methods to facilitate emancipatory research with people facing multiple disadvantage: a role for health and care professionals

KRAMER-ROY, Debbie
2015

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Participatory and creative research methods are a powerful tool for enabling active engagement in the research process of marginalised people. It can be par- ticularly hard for people living with multiple disadvantage, such as disabled peo- ple from ethnic minority backgrounds, to access research projects that are relevant to their lived experience. This article argues that creative and participa- tory methods facilitate the co-researchers’ engagement in the research process, which thus becomes more empowering. Exploring the congruence of these meth- ods with their professional ethos, health and care professionals can use their skills to develop them further. Both theory and practice examples are presented.

A Framework for Healthcare Provision to Children with Intellectual Disability

NUJUM, Z T
ANILKUMAR, T
VIJAYAKUMAR, K
ANISH, T
MOOSAN, H
2013

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Purpose: The Kudumbashree mission, an initiative of the Government of Kerala state in India, has collaborated with Local Self Governments to set up ‘Buds’, a special school system for individuals with intellectual disability. The objectives of this study were to evaluate the structure and functioning of ‘Buds’ schools, to identify the healthcare needs of the students, and to conceptualise a framework for healthcare provision.

 

Method: A cross-sectional survey was conducted among 202 children at 11 registered ‘Buds’ schools in Kerala. A multidisciplinary team consisting of a psychiatrist, public health personnel and a social worker from the Medical Colleges of Kerala, visited the institutions. Data collection consisted of abstraction from medical records, interviews with parents, and clinical assessment and prescription of intervention by the specialists concerned. A pre-tested semi- structured questionnaire was used for every child. Using both quantitative and qualitative techniques, the public health personnel in the team evaluated the structure and functioning of the schools.

 

Results: The most commonly associated condition was epilepsy, seen in 11.9% of the children, while 28.2% had behavioural problems. The medicines needed were mainly anti-epileptics and drugs for behavioural problems. Interventions for self help and social skill training were also among the important requirements. The infrastructure and other facilities were poor in many schools, with the average student to teacher ratio at 14:1. While these institutions were well utilised, functioning was good only in 27.2% of the schools. Healthcare services and visits by healthcare personnel were far from adequate. This study proposes a framework in which the Medical Colleges and Health Services can function together to deliver healthcare services to children at these schools, with linkages from the District Mental Health Programme (DMHP).

 

Conclusion and Recommendation: Evidence that these schools are well utilised indicates a need to propagate this initiative in other areas of the state, country and other countries. However, improvements in infrastructure, human resources and other logistics are required. Besides, the healthcare needs of these children have to be addressed. A comprehensive healthcare programme through the existing system, using a multidisciplinary approach, needs to be developed.

Children with learning disabilities: A phenomenological study of the lived experiences of Iranian mothers

KERMANSHAHI, S M
VANAKI, Z
AHMADI, F
KAZEMNEJAD, A
AZADFALAH, P
2009

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Nursing as a family-oriented profession involves supporting mothers of children with learning disabilities to gain an awareness of their role. However, few studies have explored the whole experience of such mothers. This study embarks on an understanding of lived experiences of Iranian mothers who have children with learning disabilities. A qualitative approach was adopted using the phenomenology of semi-structured interviews carried out with six Iranian mothers whose children attended a special school in Tehran. The data were analysed in line with van Manen’s suggestions. Two main themes were abstracted; being the centre of stress circles and being in the midst of life and death. Themes include care management challenges for self and child, experiencing through helplessness and hopefulness and experiencing self devote and self neglect. Overall, a majority of mothers experienced a stressful life. The study concludes that Iranian mothers’ lived experience of having children with learning disabilities can be likened to the constant swing of a pendulum between two polarities of positive and negative feelings. This knowledge can provide an heuristic to help health staff guide mothers in adjusting to their children who have learning disabilities.

The influence of HIV/AIDS on community-based rehabilitation in dar es salaam, Tanzania

BOYCE, William
COTE, Laurence
2009

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Community-Based Rehabilitation (CBR) is the method of choice for delivering services for people living with disabilities in many countries. HIV/AIDS is changing the daily lives of many women by adding to their responsibilities. How realistically can such women participate actively in community development activities like CBR? This paper examines the impact of HIV/AIDS on CBR in Dar es Salaam, Tanzania. Observational sessions and individual interviews were conducted with caregivers of children with disabilities, CBR workers and managers over a three month period. Among the findings was a significant decrease in CBR activities in families affected by HIV/AIDS. This change in family priorities was due to better knowledge of acute diseases and increased stigma of HIV/AIDS in comparison to disability. Older CBR workers were more likely to incorporate elements of HIV/AIDS care with CBR, while younger CBR workers were more likely to avoid HIV/AIDS support. The ability of CBR workers to adapt their working habits to an environment with high HIV/AIDS prevalence is linked to their sense of skill competence and their knowledge/beliefs about risk of infection. Further integration of CBR work with general health development initiatives may improve this situation.

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