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“This baseline report contains information on the initial steps (prior to the start of data collection) undertaken to include disaggregation of data by disability in two projects in Tanzania and India. The report includes information on project selection, development of an Monitoring and Evaluation (M&E) plan, adaptation of data collection tools and training of Country Office staff, partners and data collectors. This baseline also captures the knowledge, attitudes and practices of programme managers, decision makers and data collectors around disability, the availability of data, and the experiences of Sightsavers’ implementing staff”

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Purpose: This study analyses the experiences of women affected by leprosy, taking into consideration whether they concealed or disclosed their status, and looks specifically at their ‘agency’. The aim is to provide recommendations for stigma-reduction interventions.

Methods: The study population consisted of women affected by leprosy who live in Cirebon District, Indonesia. Study subjects were purposively selected on the basis of characteristics such as age and role in the community. After informed consent was obtained, they were interviewed in their homes. Data was collected through semi-structured in-depth interviews. Analysis was done with six points of focus: who knows, care, social stigma, feelings, self-isolation and agency.

Results: In total, 53 women were interviewed. Eight were omitted due to ambiguity over who knew about their leprosy status. Five different categories of ‘disclosure’ were identified, ranging from 1 woman who concealed completely to 19 (42%) who disclosed fully. Disclosure created possibilities for care and support, which 84% mentioned they received. In contrast, disclosure was also found to be linked to negative feelings, isolation and social stigma, which 18 women experienced. The women coped with this through acceptance, comforting themselves, trusting in God, focussing on recovery, friendship or finding inspiration in others. 

Conclusions: An analysis of these experiences helps to understand how women affected by leprosy are coping, and what they are already doing for and by themselves. This could be a starting point for more appropriate and effective stigma-reduction interventions. It is recommended to consider the following: i) assisting people with their choice, if any, of either concealment or disclosure, ii) the appropriateness of any intervention for people who (want to) conceal their illness, iii) the existing sources of care and support, and iv) the inner strength demonstrated and its three sources (spirituality, relationships and the desire to be cured).

Purpose: This study provides evidence to clarify disability inclusiveness in activities of rural business. As an alternative to the analysis method that deals with disability-inclusiveness as a vague concept, knowledge management principles were applied to propose a classification method for disability-inclusive business as an emerging concept at the community level.

Methods: The analysis focuses on: 1) productivity of entrepreneurs with disabilities; 2) knowledge of entrepreneurs with disabilities; and 3) understanding of customers. A total of 50 entrepreneurs with disabilities in micro and small businesses in Southeast Asia were identified in this context. Data were collected and analysed according to a story-based knowledge management approach and value chain analysis. Fuzzy logic analysis which exploited domain ontology was utilised to convert knowledge from tacit to explicit, in line with knowledge management principles. A numeric weight based on linguistic variables became available to describe each disability-inclusive business case, as well as the arrangements of fuzzy sets.

Results: Out of 50 cases, 7 were classified as fully disability-inclusive while 14 were classified as not disability-inclusive. Productivity of entrepreneurs with disabilities in 3 elements of the value chain, namely procurement, product/service development and distribution, was observed to be significant. The Study showed that disability-related knowledge of entrepreneurs with disabilities could contribute to business performance according to the key success factors to enhance added value. Two elements of the value chain, namely sales/marketing and customer service, are not the decisive factors to define and clarify disability-inclusiveness. 

Conclusion: Settings in Southeast Asia are diverse and at varying stages of economic and social development; hence the environment which promotes the disability-inclusive business concept may be inconsistent. Micro and small- scale rural businesses were tackled as a first step to evaluate comparative efforts of each case of disability-inclusive business from the viewpoint of entrepreneurs with disabilities. Therefore, in highlighting the differences, it is recommended that further research should seek to apply weighting factors depending on the individual size, contents and scale of major business areas.

Background: In many parts of South Africa there is little support for people with psychosocial disability caused by schizophrenia, beyond provision of psychotropic medications. Appropriate community-based psychosocial rehabilitation interventions are a crucial element of mental health service development.

Objectives: This study aimed to use an explanatory model of illness framework to document experiences of illness, disability and recovery amongst service users with schizophrenia and their caregivers in a poorly resourced area in the North West Province. Data were used to provide recommendations for a contextually appropriate non-specialist facilitated group psychosocial rehabilitation intervention.

Method: Eighteen in-depth individual interviews were conducted: nine with schizophrenia service users and nine with caregivers. Interviews were conducted by two trained field researchers; both clinical psychologists fluent in the first language of participants. All interviews were recorded, translated and transcribed. Data were thematically analysed using NVivo 9.

Results: Participants linked the illness to witchcraft, poverty and stress. Family conflict was recognised in the course of the illness, causing stress and challenges for emotional well-being. Knowledge of diagnosis and biomedical treatment was minimal. Key factors recognised by service users as promoting recovery were the ability to work, and the support of traditional healers and religious structures.

Conclusion: Based on the findings of this study, a group psychosocial rehabilitation intervention emerged as a recommendation, with the incorporation of psycho-education, adherence support, coping skills, and opportunities for income generation and productive activity. The importance of also enlisting the support of religious leaders and traditional healers in supporting recovery is emphasised.

Background: Multiple sclerosis (MS) is a debilitating disease and there is little research on support networks for people with MS (PwMS). More specifically, most studies on online support groups focus on those who actively participate in the group, whereas the majority of those who utilise online support groups do so in a passive way.

Objectives: This study therefore aimed to explore the experiences of non-active users of an online Facebook support group for PwMS. Emphasis was placed on the facilitators and the barriers that were associated with membership to this group.

Method: An exploratory qualitative research design was implemented, whereby thematic analysis was utilised to examine the ten semi-structured interviews that were conducted.

Results: Several facilitators were acquired through the online support group; namely emotional support (constant source of support, exposure to negative aspects of the disease),informational support (group as a source of knowledge, quality of information) and social companionship (place of belonging). Some barriers were also identified; namely emotional support (emotions lost online, response to messages, exposure to negative aspects of the disease), informational support (information posted on the group, misuse of group) and social companionship (non-active status).

Conclusion: These findings demonstrate that the non-active members of the online support group for PwMS have valid reasons for their non-active membership status. More important,the findings suggest that the online Facebook support group provided the group members with an important support network in the form of emotional support, informational support and social companionship, despite their non-active membership status or the barriers that have been identified.

Background: The ‘EquitAble’ project carried out content analyses of policies and collected and analysed qualitative and quantitative data concerning access to health services in Sudan, Malawi, Namibia and South Africa. Our particular concern was to address the situation of people with disabilities, although not in isolation from other marginalised or vulnerable groups.

Objectives: This article reports on the content, context, process and impact of project EquitAble, funded by the European Commission Seventh Research Framework Programme, which brought together researchers from Ireland, Norway, South Africa, Namibia, Sudan and Malawi.

Method: After the 4-year project ended in February 2013, all members of the consortium were asked to anonymously complete a bespoke questionnaire designed by the coordinating team. The purpose of the questionnaire was to capture the views of those who collaborated on the research project in relation to issues of content, context, process and impact of the EquitAble project.

Results: Our results indicated some of the successes and challenges encountered by our consortium.

Conclusion: We identified contextual and process learning points, factors often not discussed in papers, which typically focus on the reporting of the ‘content’ of results.

Background: Mortality rates from injuries are higher for people from poorer economic backgrounds than those with higher incomes (according to the World Health Organization [WHO]), and health care professionals and organisations dealing with people with disabilities experience that individuals with spinal cord injury (SCI) in low income countries face serious challenges in their daily lives.

Objectives: The aims of this study were to explore life expectancy (life expectancy is the average remaining years of life of an individual) and the situation of persons living with SCI in low income settings.

Method: Literature studies and qualitative methods were used. Qualitative data was collected through semi-structured interviews with 23 informants from four study sites in Zimbabwe representing persons with SCI, their relatives and rehabilitation professionals.

Results: There are few publications available about life expectancy and the daily life of persons with SCI in low income countries. Those few publications identified and the study findings confirm that individuals with SCI are experiencing a high occurrence of pressure sores and urinary tract infections leading to unnecessary suffering, often causing premature death. Pain and depression are frequently reported and stigma and negative attitudes are experienced in society. Lack of appropriate wheelchairs and services, limited knowledge about SCI amongst health care staff, limited access to health care and rehabilitation services, loss of employment and lack of financial resources worsen the daily challenges.

Conclusion: The study indicates that life expectancy for individuals with SCI in low income settings is shorter than for the average population and also with respect to individuals with SCI in high income countries. Poverty worsened the situation for individuals with SCI, creating barriers that increase the risk of contracting harmful pressure sores and infections leading to premature death. Further explorations on mortality and how individuals with SCI and their families in low income settings are coping in their daily life are required to provide comprehensive evidences.

Background: The rehabilitation of physically disabled people has been explored from the perspectives of patients, health professionals, rehabilitation agencies, etc. However, no study has linked disability types, training programmes and career prospects. In this study, we therefore evaluated the professional integration of trained disabled people.

Methods: This retrospective survey included all physically disabled people admitted to two rehabilitation centres in Congo between 1996 and 2005. Data collection used registers from two units, the medical unit and the rehabilitation unit, to obtain information on age, sex, disability type, follow-up training, present living activity and field of training. We defined ‘professional integration’ as being when the current profession matched the training received at the rehabilitation centre.

Results: The percentage of participants with integrated training was 96.8% (95% CI; 92.1–98.7%). In the urban setting, 6.7% (95% CI; 2.6–16.1%) of the trainees were not integrated, while all were integrated in the rural setting. Trainees aged between 16 and 25 years and those 51+ years represented 12.5% (95% CI; 4.9–28%) and 50% (95% CI; 25.3–74.6%) of the non-integrated cases respectively. Paralysis from poliomyelitis was the most common [62.9% (95% CI; 54.3–70.8%)] disability, and the non-integrated participants included people with poliomyelitis [1.2% (95% CI; 0.2–6.7%)], general paralysis [10.5% (95% CI; 2.9–31.3%)] and sight disorders [50% (95% CI; 9.4–90.5%)]. Tailoring was the main field of training [57.4% (95% CI; 48.7–65.7%)], and high numbers of participants with non-integrated training worked in tailoring, shoe making, welding and computer repair.

Conclusions: Despite a high rate of integration in Congo, professional training and subsequent integration would still benefit from a comprehensive approach that considers the type of disability, training and socio-demographic features. Further studies targeting alumni from the training programmes and their ongoing assessment are warranted.

The forthcoming book Dis/ability Studies: Theorising Disablism and Ableism argues that we are living in an historical epoch which might be described as neoliberal-ableism, in which we are all subjected to slow death, increased preca- rity and growing debility. In this paper we apply this analysis to a consideration of austerity with further reference to disability studies and politics.