Hasheem Mannan

Relationship of Perceived Adequacy of Services, Family–Professional Partnerships, and Family Quality of Life in Early Childhood Service Programmes

This study applied three family measures (ratings of service adequacy or implementation, satisfaction with the family–professional partnership, and family quality of life) to a sample of families of young children in one Midwestern U.S. state. The results suggest that: (a) families more often believe they are receiving adequate amounts of services for their child, but tend to believe they are not receiving adequate amounts of services for their family; (b) respondents tend to be satisfied with their partnerships with their primary service provider, with lower satisfaction ratings for the providers ability to meet their childs individual needs and to provide information about services; and (c) respondents tended to be more satisfied with their familys material well‐being and less so with their familys emotional well‐being. Finally, we found that service adequacy ratings were a significant predictor of family quality of life, and that partnerships partially mediated this effect. We discuss the research, service, and policy implications of these findings.

Perceived barriers to accessing health services among people with disabilities in rural northern Namibia

People living with disabilities (PWD) face unique problems in dealing with conventional healthcare facilities. We investigate the experiences of PWD as they access healthcare facilities in rural Namibia. More specifically, we investigate structural–environmental and process barriers to accessing health facilities. The study relied on semi-structured interviews and purposive sampling. The results showed PWD find it difficult to walk to health centers for treatment due to lack of transport, money to pay for treatment and toilet facilities and the distance is too far for people with lower-limb disabilities. There is a need to consider the unique issues affecting access to healthcare for people living with disabilities to achieve equitable access to healthcare services.

Perceived Barriers for Accessing Health Services among Individuals with Disability in Four African Countries

There is an increasing awareness among researchers and others that marginalized and vulnerable groups face problems in accessing health care. Access problems in particular in low-income countries may jeopardize the targets set by the United Nations through the Millennium Development Goals. Thus, identifying barriers for individuals with disability in accessing health services is a research priority. The current study aimed at identifying the magnitude of specific barriers, and to estimate the impact of disability on barriers for accessing health care in general. A population based household survey was carried out in Sudan, Namibia, Malawi, and South Africa, including a total of 9307 individuals. The sampling strategy was a two-stage cluster sampling within selected geographical areas in each country. A listing procedure to identify households with disabled members using the Washington Group six screening question was followed by administering household questionnaires in households with and without disabled members, and questionnaires for individuals with and without disability. The study shows that lack of transport, availability of services, inadequate drugs or equipment, and costs, are the four major barriers for access. The study also showed substantial variation in perceived barriers, reflecting largely socio-economic differences between the participating countries. Urbanity, socio-economic status, and severity of activity limitations are important predictors for barriers, while there is no gender difference. It is suggested that education reduces barriers to health services only to the extent that it reduces poverty. Persons with disability face additional and particular barriers to health services. Addressing these barriers requires an approach to health that stresses equity over equality.

Family voices: life for family carers of people with intellectual disabilities in Ireland.

BACKGROUND Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. MATERIALS AND METHOD This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. RESULTS Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support. CONCLUSIONS Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions.

Inclusion and Human Rights in Health Policies: Comparative and Benchmarking Analysis of 51 Policies from Malawi, Sudan, South Africa and Namibia

While many health services strive to be equitable, accessible and inclusive, peoples’ right to health often goes unrealized, particularly among vulnerable groups. The extent to which health policies explicitly seek to achieve such goals sets the policy context in which services are delivered and evaluated. An analytical framework was developed – EquiFrame – to evaluate 1) the extent to which 21 Core Concepts of human rights were addressed in policy documents, and 2) coverage of 12 Vulnerable Groups who might benefit from such policies. Using this framework, analysis of 51 policies across Malawi, Namibia, South Africa and Sudan, confirmed the relevance of all Core Concepts and Vulnerable Groups. Further, our analysis highlighted some very strong policies, serious shortcomings in others as well as country-specific patterns. If social inclusion and human rights do not underpin policy formation, it is unlikely they will be inculcated in service delivery. EquiFrame facilitates policy analysis and benchmarking, and provides a means for evaluating policy revision and development.

Understanding the local context for the application of global mental health: a rural South African experience

BACKGROUND The global mental health movement has supplied ample evidence of treatment gaps for mental health care in low and middle-income countries. It is also clear that substantial progress has been made in developing an evidence base for innovative treatments which have been shown to work. It is only through rich and detailed understandings of local contexts and individual experiences that the challenges global mental health faces can be fully appreciated. METHODS In this article, we use a single, qualitative case study from one context and of one family affected by mental disorder. This is to elucidate core issues which we regard as key to further developments in the global mental health agenda. RESULTS Core issues are poor mental health literacy, transport and lack of outreach, limitations of formal health care, challenges at the interface with indigenous health care and lack of follow-up and rehabilitation. CONCLUSION We propose shifting the focus of mental health care from cure to promotion and prevention, using an interdisciplinary team of lay and trained health workers from the professional, folk and popular sectors. The challenges are complex, as this small study shows, but it is only by looking closely at local conditions that it is possible to develop interventions which are contextually appropriate and make optimal use of local resources.

Core Concepts of Human Rights and Inclusion of Vulnerable Groups in the Disability and Rehabilitation Policies of Malawi, Namibia, Sudan, and South Africa

In recent decades, there has been a push to incorporate the World Health Organization “Health for All” principles in national, regional, and local health policy documents. However, there is still no methodology guiding the appraisal of such policies with regard to the extent that they address social inclusion. In this article, the authors report on the development of EquiFrame, a novel policy analysis framework that was used to evaluate the disability and rehabilitation policies of Malawi, Namibia, Sudan, and South Africa. The policies were assessed in terms of their commitment to 21 predefined core concepts of human rights and inclusion of 12 vulnerable groups. Substantial variability was identified in the degree to which the core concepts and vulnerable groups were featured in these policy documents. The overall summary rankings for the disability policies of the countries studied were as follows: Namibia–High, Malawi–Low, and Sudan–Low. The rehabilitation policy of South Africa was ranked as Low. The results support the idea that adequate disability and rehabilitation policies remain mostly undefined. EquiFrame may offer a useful methodology for evaluating and comparing human rights and social inclusion across policy documents.

A systematic review of the effectiveness of alternative cadres in community based rehabilitation

BackgroundThe Millennium Development Goals (MDGs) aim to improve population health and the quality and dignity of people’s lives, but their achievement is constrained by the crisis in human resources for health. An important potential contribution towards achieving the MDGs for persons with disabilities will be the newly developed Guidelines for Community Based Rehabilitation (CBR), launched in 2010. Given the global shortage of medical and nursing personnel and highly skilled rehabilitation practitioners, effective implementation of the CBR guidelines will require additional health workers, with improved distribution and a new skill set, allowing them to work across the health, education, livelihoods, social, and development sectors.MethodsWe conducted a systematic review to evaluate existing evidence regarding the effectiveness of alternative cadres working in CBR in low and middle income countries. We searched the following databases: PUBMED, LILACS, SCIE, ISMEAR, WHOLIS, AFRICAN MED IND. We also searched the online archive of the Asia Pacific Disability Rehabilitation Journal (available from 2002 to 2010), which was not covered by any of the other databases. There was no limit set on inclusion with regard to how recent a publication was in the general search.ResultsThe search yielded 235 abstracts, only 6 of which addressed CBR through some type of evaluative component. Three of the studies explored the effects of CBR interventions, mainly related to physical disabilities, while three explored issues concerned with the work performance of rehabilitation workers. Altogether the studies covered four different countries.ConclusionAll six studies related to specific service delivery in local contexts, using outcome measures that were not comparable across studies. We do not, therefore, feel that the current results provide adequate methodology or evidence for reliably generalizing their results. Due to the dearth of evidence regarding the effectiveness of alternative cadres in CBR, systematic research is needed on the training, performance and impacts of rehabilitation workers, including their capability of working across sectors and engaging with and making use of health systems research.

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 (AU) 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.