'No one prepared me to go home': Cerebrovascular accident survivors' experiences of community reintegration in a peri-urban context

Background: The South African health system has policies and strategies to ensure effective rehabilitation and reintegration of individuals who have survived a cerebrovascular accident into their respective communities. However, implementation of such guidelines remains an issue. Aim: This study sought to explore cerebrovascular accident (CVA) survivors' experiences of community integration. Setting: The study was located in a peri-urban community within the KwaZulu-Natal Province, South Africa. Methods: An explorative qualitative study with eight purposively selected CVA survivors was conducted via semi-structured individual interviews. Data were audio-recorded and manually transcribed prior to thematic analysis. Trustworthiness of the study was maintained by strategies such as analyst triangulation, an audit trail and use of thick descriptions. Ethical principles of autonomy, informed consent, confidentiality and privacy were also maintained in the study. Results: Six themes emerged that highlighted (1) loss of autonomy and roles, (2) barriers to community reintegration, (3) social isolation of participants, (4) finding internal strength, (5)enablers of community reintegration including the positive influence of support and the benefits derived from rehabilitation and (6) recommendations for rehabilitation. Conclusion: The study revealed both positive and negative influences that impact CVA survivors' ability to effectively reintegrate into their respective communities following a CVA. Recommendations include the need for education and awareness around access to rehabilitation services for CVA survivors, advice on how to improve CVA survivors' ability to mobilise in the community and make environmental adaption to facilitate universal access, provision of home programmes and caregiver training for continuity of care and for inclusion of home-based rehabilitation into current models of care

Reading the National Disability and Rehabilitation Policy in the light of Foucault's technologies of power

In the area of disability studies, models have been at the centre of debates, influencing social policies, practices and legal frameworks. The former Ministry of Health and Social Welfare in the Kingdom of Lesotho was not an exception. In its efforts to tackle issues of disability, it produced The National Disability and Rehabilitation Policy: Mainstreaming persons with disabilities into society in 2011. This policy document is rooted in the social model and seeks to address long-standing problems and challenges of people with disabilities in the Kingdom. Using ideas from Foucault, particularly the technologies and regimes of power, which work through language and practice, this article examined ways in which people with disabilities are constituted through state knowledge and government policies, and concluded that these constructions form the basis for alienation and marginalisation in society

Inclusion of vulnerable groups in health policies: regional policies on health priorities in Africa

Background: If access to equitable health care is to be achieved for all, policy documents must mention and address in some detail different needs of groups vulnerable to not accessing such health care. If these needs are not addressed in the policy documents, there is little chance that they will be addressed at the stage of implementation. Objectives: This paper reports on an analysis of 11 African Union policy documents to ascertain the frequency and the extent of mention of 13 core concepts in relation to 12 vulnerable groups, with a specific focus on people with disabilities. Method: The paper applied the EquiFrame analytical framework to the 11 AU policy documents. The 11 documents were analysed in terms of how many times a core concept was mentioned and the extent of information on how the core concept should be addressed at the implementation level. Each core concept mention was further analysed in terms of the vulnerable group in referred to. Results: The analysis of regional AU policies highlighted the broad nature of the reference made to vulnerable groups, with a lack of detailed specifications of different needs of different groups. This is confirmed in the highest vulnerable group mention being for 'universal'. The reading of the documents suggests that vulnerable groups are homogeneous in their needs, which is not the case. There is a lack of recognition of different needs of different vulnerable groups in accessing health care. Conclusion: The need for more information and knowledge on the needs of all vulnerable groups is evident. The current lack of mention and of any detail on how to address needs of vulnerable groups will significantly impair the access to equitable health care for all

Perceptions of caring for children with disabilities: experiences from Moshi, Tanzania

Background: Although there exist laws; policies and standards in Tanzania that serve to protect and improve the lives of children with disabilities; the individual human experiences and feelings of the carers and parents still remain the realities of caring for children with disabilities. There is a lack of qualitative studies examining experiences in a developing context. This research aimed to fill that gap. Objectives: The objective of this research was to gain an insight into how having a child with a disability impacts upon participants lives and to examine both negative and positive experiences of care through the use of qualitative methods. Method: This was a qualitative; exploratory study and followed a phenomenological method. Purposive convenience sampling methods were used to recruit 14 carers in Moshi; Tanzania. Qualitative; semi-structured interviews were undertaken with all 14 participants. Results: Five main themes emerged from the data which shed light on the carers experiences; namely; objective challenges in terms of financial challenges; employment issues and demands of care; subjective challenges in the form of stigma; isolation and pity; positive experiences such as the child's progress; respect and happiness; material and financial needs; and coping mechanisms which included beliefs; support and attitudes. Conclusion: The findings of this research were that objective challenges are common and more significant than subjective challenges. Positive experiences were not as easily identified by the participants as the challenges faced. However; having analysed the data; carers do not experience their roles as entirely negative. They simply need the resources to deal with objective challenges which in a developing context are not easily attainable

Stakeholder consultations on community-based rehabilitation guidelines in Ghana and Uganda

Background: The focus of this paper is the new broadened conceptualisation of community-based rehabilitation (CBR); which promotes the empowerment and inclusion of people with disabilities (PWDs) in diverse ways within their communities. New guidelines for CBR were launched in October 2010 by WHO/ILO/UNESCO/IDDC; and this paper describes part of the process by which these were produced using participatory approaches involving International Non-Government Organisations (INGOs) and local partners. The paper reviews the evolution of CBR and describes how grassroots consultation by INGOs working with key stakeholders in the disability arena can influence policy on disability issues; and reciprocally how policy change can inform organisations' practice and research activities. This ongoing bidirectional influence is illustrated with data from the participatory consultation process about the new CBR guidelines carried out by Sightsavers in Uganda and Ghana. Objectives: To consult with key stakeholders in the disability arena in Uganda and Ghana; in order to gain their opinions and suggestions for improvements to the then draft CBR guidelines; as part of a wider global participatory process of consultation on the document. Methods: The INGO Sightsavers gathered qualitative data through focus group discussions and questionnaires in both countries. Results: The participants' critiques of the draft guidelines carried out in multiagency participatory processes were analysed thematically and fed back to the CBR guidelines editorial team. Conclusion: The paper concludes that stakeholders in diverse communities can actively contribute to shaping policy and practice through participatory consultations. Local and national government and non-government organisations and other key informants can inform the development of national and international guidelines and policies. This participatory approach can be successfully facilitated by INGOs. In turn; these processes have prompted organisations to adapt their own policies and programmes in order to be more responsive to the local needs and concerns of PWDs

Perceived control, academic performance and well-being of Ghanaian college students with disability

Background: Empirical evidence abounds showing the impact of perceived control on subjective well-being in several spheres of functioning, including academic performance. At tertiary institutions, such as the Kwame Nkrumah University of Science and Technology, Ghana, little is known about the needs of students with disabilities, as very few persons with disabilities attend institutions of higher learning. Objectives: This study examined the relationship between perceptions of control and the academic and subjective well-being of students with disabilities. Method: A total of 69 students with disabilities participated in this cross-sectional descriptive study. Using trusted control and subjective well-being scales, data were subject to descriptive analyses. Results: Consistent with previous works, perceived control increased with increased subjective well-being, moderated by gender. In addition, forms of secondary control appeared to aid primary control in the tenacious pursuit of goals. However, neither perceived control nor self-esteem was predictive of academic performance. Conclusion: Limitations of sample size notwithstanding, the findings of the study can be considered provocative. Implications for clinical utility in facilitating context-specific interventions for this marginalised group are discussed. Replication with a larger sample size in other tertiary institutions is suggested for future work

A journey towards inclusive education; a case study from a 'township' in South Africa

The purpose of this case study was to relate part of the journey to appropriate education for two young children with physical disabilities in a low socio-economic peri-urban informal settlement ­ or 'township' ­ in South Africa. The part of the on-going journey described here spanned four-and-a-half years and included the two children, their families, their teachers, their community and a small team of rehabilitation professionals working for a non-profit organisation in the area. The rehabilitation professionals' goals were to provide support for the children, their families, their current special care centre and the school(s) they would attend in the future. The steps from the special care centre, to a mainstream early childhood development (ECD) centre for both of them, and then on to (a) a school for learners with special educational needs (LSEN) for one child and (b) a mainstream primary school for the other, are described. Challenges encountered on the way included parental fears, community attitudes and physical accessibility. Practical outcomes included different placements for the two children with implications and recommendations for prioritised parent involvement, individual approaches, interdisciplinary and community-based collaborations. Recommendations are given for clinical contexts, curricula and policy matters; for research and for scaling up such a programme through community workers

Provision of Psychosocial Support for Young people Living with HIV: Voices from the Field

This review provides a synthesis of the experiences of organisations providing psychosocial support for young people living with HIV (YPLHIV) from throughout the world. Little research exists on psychosocial support for YPLHIV; with many providers uncertain about how to address their complex needs. Eighty-six organisations were sent a survey containing 15 semi-structured; open-ended questions. Sixty-eight organisations from the United States; Europe; Africa; Asia; Latin America and the Middle East responded. The survey asked what challenges the organisation's patient group face; what the organisational aims are; how; where and by whom psychosocial support is delivered; what types of psychosocial support have been effective and which have not; and what recommendations the organisation has for service provision and policy.Data were stratified by age of population; region of the world and whether youth were infected at birth or in adolescence. The problems and needs across groups were more consistent than disparate. Adherence to medication; disclosure of HIV status; issues relating to sex and lack of support networks are problems faced by all YPLHIV. Most organisations use a multi-disciplinary team of individuals to meet these needs; with particular emphasis on individual and group therapy; educational support; and skills-building programmes. The review stresses the importance of youth-centered and youth-led approaches that engage young people in the planning; implementation and evaluation of programmes. Organisations underlined the need for increased funding; capacity building and trained staff. They suggest that policy makers put more effort into understanding the distinctiveness of adolescence; particularly in the context of HIV; andchallenge them to make longer-term commitments to funding and programme support. In order for organisations to provide better services; they need further evidence of effective solutions; programme guidance and support tools; and increased collaboration and communication with one another; and with policy-makers and donors