The Zimbabwe Patients’ Charter of Rights: Effects on Health Care Access by People with Disabilities Living with HIV and AIDS

This study sought to: (a) examine the role of the Zimbabwe Patients’ Charter of Rights in enabling health care access by people with disabilities living with HIV and AIDS; and (b) explore policy translational issues influencing access to HIV and AIDS treatment and care services by people with disabilities living with HIV and AIDS. A survey approach was used to collect data in this study. A purposive sample of 35 people with disabilities living with HIV and AIDS in a rural district of Zimbabwe was used. Participants self-reported on their awareness of Patients’ Rights in the context of the national charter; perceived access to competent health care and treatment services; access to information on HIV/AIDS issues, national healthy policies and skills available at community level to work with people with disabilities on HIV/AIDS issues. The study found that people with disabilities perceive health care as a basic right. However, people with disabilities also reported significant barriers to access competent healthcare and treatment. Most often, their treatment and care were significantly delayed, and where it was offered, individuals with hearing, visual impairments and intellectual disabilities were stereotyped as incompetent patients unable to represent or articulate their health care needs. Address for correspondence: Professor Almon Shumba School of Teacher Education, Faculty of Humanities Central University of Technology, Free State Private Bag X20539, Bloemfontein 9300. South Africa E-mail: [email protected], [email protected] INTRODUCTION The Patients’ Charter of Rights increasingly is proposed by national governments, and mostly from the advocacy of consumer desiring person centered services (Chireshe et al. 2010; United Nations 1993). In recent years the significance of Patients’ Charter of Rights have been boosted by the recognition by the United Nations and World Health Organisation that right to basic health is human right (Chireshe et al. 2010; Umeasiegu et al. 2011). Zimbabwe Patients Charter was developed from recommendations by the Consumer Council of Zimbabwe (CCZ) and the Zimbabwe Ministry of Health and Child Welfare to offer protection to consumer and improve health services delivery (Ministry of Child and Social Welfare 2010). The Charter spells out general consumer right to access and treatment. According to the Zimbabwe Patients’ Charter, patients’ rights can be described as social and individual rights. Social rights cover aspects such as the quality and accessibility of health care, while individual rights relate to basic human and consumer rights (Ministry of Child and Social Welfare 2010). The Zimbabwe Patients’ Charter focuses on a number of basic health issues. Patients, according to this charter, have the right to access the heath system at the time of need, both as paying and non-paying patients (Ministry of Child and Social Welfare 2010). Health services providers are expected to respond to the needs of patients. Patients are also according to the Zimbabwe Patients’ Charter accorded rights to hospitality, confidentiality, consent, privacy, human treatment, choice and redress of grievances. These rights of patients in the Zimbabwe Patients’ Charter are very important in a world with people living with HIV/AIDS (Umeasiegu et al. 2011). The World Health Organisation projects that about 10 % of the world population (or approximately 650 million people) has a disability (United Nations 2006a). About 80 % of this population live in developing countries (United Nations 136 JABULANI MPOFU AND ALMON SHUMBA 2006a) with limited or no adequate health services (United Nations 2006b). Health and well being are fundamental rights of people with disabilities living with HIV/AIDS. Health is defined by the World Health Organisation (WHO) as a state of complete physical mental and social well being of absence of disease (WHO 1948). People with disabilities living with HIV can be healthy despite their primary disabilities. Social policies to maintain and sustain heal and well being in people with disabilities living with HIV/AIDS are major preoccupations of national governments, non-governmental and multi-lateral agencies around the globe (Prince et al. 2010). Nonetheless, health related qualities of life in people with disabilities around the globe still need serious attention, although it is clearly explained as a human right issue by the United Nations. Healthy communities are not possible if the heaths of citizens with disabilities are not taken into account. The global trends on HIV/AIDS and disability have shown that it is paramount for governments to formulate relevant and critical policies that shall mitigate the impact of the HIV/AIDS pandemic on people with disabilities (Umeasiegu et al. 2011). Progress has been made in the last decade in solid foundation for deepening the struggle against the HIV/AIDS pandemic and registering more stories in typical population of the world (Umeasiegu et al. 2011). Little is known, particularly, on the progress that encompass people with disabilities, the impetus towards the progress of scaling-up HIV prevention, treatment and care in the globe through continuous formulation, revision advocacy and implementation of policies specifically to enhance the inclusion of people with disabilities in HIV/AIDS service delivery has been seen. The integration and reinforcement of prevention, treatment and care for HIV/AIDS unfolds as a bold action exercised across all sectors and level of governments to address the burden of HIV/ AIDS for people with disabilities in the attainment of the millennium development goals specifically, ‘universal access to affordable health services for all who need it’. There can be no single policy or guideline that blankets over the whole population of people with disabilities but rather have policies tailored for each group as they have diverse needs (Umeasiegu et al. 2011). The UN Convention on the rights of people with disabilities, the Patients’ Charter and the Disability Act (1997) are among the few existing policy legislatures available in Zimbabwe (Ministry of Child and Social Welfare 2010). However, their effectiveness on the health rights of people with disabilities living with HIV/AIDS is still unknown. The growing relationship between HIV/AIDS and disabilities is an emerging issue and cause for concern as persons with disabilities are at risk of exposure to HIV (ADD 1996). Additionally, there is a growing understanding that persons living with HIV/AIDS are also at risk of becoming disabled on a permanent or episodic basis as a result of their condition (Chireshe et al. 2010). Like any other person, persons with disabilities’ rights are cherished in the Zimbabwe Patients’ Charter and therefore require information on HIV/AIDS and access to programmes, services and resources. In most countries the situation of persons with disabilities living with HIV/AIDS is further compounded by societal barriers that hinder their full and effective participation in society including access to education (Choruma 2006; Mpofu 1990). Despite the growing relationship between HIV/ AIDS and disability, persons with disabilities living with HIV/AIDS have not received sufficient attention within national responses to HIV/ AIDS (Richey 2004). Furthermore, existing HIV/ AIDS prevention, treatment, care and support programmes generally fail to meet their specific needs (Chireshe et al. 2010; Choruma 2006). In their Ugandan study, Chireshe et al. (2010) found that although people with disabilities were aware of the HIV/AIDS pandemic, they felt discriminated with regards HIV/AIDS issues. The same study also found that people with disabilities had difficulties in accessing HIV/AIDS services because of communication problems. Other studies show that people with disabilities are often excluded from HIV/AIDS education, prevention and support services because of assumptions that they are not sexually active or do not engage in risk behaviours such as drug use or having unproductive sex (Chireshe et al. 2010; Choruma 2006; NUDIPU 2004). Similarly, literature also suggests that people with disabilities are at risk for HIV/AIDS infection (Rohleder et al. 2009). People with disabilities are vulnerable to sexual assault or abuse hence are at risk of being infected with HIV/AIDS (Choruma 2006; NUDIPU 2004). This is because of their depenTHE ZIMBABWE PATIENTS’ CHARTER OF RIGHTS 137 dence on others around them who may take advantage of their disabilities through sexually abusing them. Globally, children with disabilities are a large proportion of children not enrolled in school, which results in their exclusion from vital sexual reproductive health education that is often provided in school settings (Shumba and Abosi 2011; Shumba and Taukobong 2009). Low literacy levels among people with disabilities, especially those with intellectual disabilities and lack of HIV prevention information in accessible format make it more difficult for persons with disabilities living with HIV/ AIDS to acquire information (knowledge they need about their HIV/AIDS status) (Umeasiegu et al. 2011). Sexual and reproductive health service providers need to have knowledge about disability issues lest they will be misinformed or develop stigmatising attitudes towards persons with disabilities living with HIV/AIDS (Choruma 2006). Services offered at clinics, hospitals and in other locations must be physically accessible, sign language and Braille or other information alternative such as audio must be available at each and every clinic for accessibility of healthy services by people with disabilities living with HIV/ AIDS (Choruma 2006; Helander 1998). Besides special services, adequate medication such as ARVs must be always available. Literature reveals that where there is limited access to medication, persons with disabilities living with HIV/ AIDS may be considered a low priority for treatment (ADD 1996; Umeasiegu et al. 2011). The Zimbabwean Charter was drafted in framework of the UN Convention of Rights of Persons with disabilities (United Nations 1996, 2006a, 2006b) which provides a global policy framework to promote the equal rights for people with disabilities, including sexual and reproductive health, on par with those with disabilities and enable policies to implement HIV/AIDS programming for persons with disabilities and programmes to fight against stigma, discrimination and other barriers faced by persons living with HIV/AIDS. Zimbabwe has adopted anti-discrimination laws such as the Disability Act (1997) that explicitly cover discrimination on the basis of any condition. For example, section 8 (1) of the Zimbabwe Disabled Persons Act (1997:1) stipulates that “No disabled person shall on the ground of his disability alone be denied (a) admission into any premises to which members of the public are ordinarily admitted; or (b) the provision of any service or amenity ordinarily provided to members of the public unless such denial is motivated by a genuine concern for the safety of the disabled person concerned.” The Zimbabwe Patients’ Charter upholds patients’ confidentiality of their information (Ministry Health of Child and Welfare 2010). Patients’ confidentiality of their information (Cole and Oxtoby 2002) means that personal and medical information given to health care provider will be disclosed to others unless the individual has given specific permission for such release. Because the disclosure of personal information could cause professional or personal problems, patients rely on physicians to keep their medical information private. The situation in some groups of persons with disabilities such as the deaf, mentally retarded and blind becomes a challenge as literature suggests that people with disabilities living with HIV/AIDS are stereotyped as incompetent patients and are unable to represent or articulate their health care needs and hence need someone to explain their condition to the physician breaching their right to confidentiality (Umeasiegu et al. 2011). The promotion of confidentiality rights in the context of HIV/AIDS and disability is imperative to overcome existing forms of discrimination and intolerance. It is also a tool to empower individuals and communities to responds to HIV/ AIDS and lessen the impact of HIV/AIDS on the infected and affected access to clear and non judgmental information about sexually transmitted disease is difficult and restricted. The Ottawa Charter (Umeasiegu et al. 2011) defined health promotion during its 1st international conference on health promotion as the process of enabling people to increase control over and improve their health. To reach a state of complete physical, mental and social well-being, an individual or group must be able to identify and realise aspirations, satisfy needs and change or cope with the environment (Chireshe et al. 2010; Choruma 2006). Health is seen as resource for everyday life, not the objective of living. Health is a positive concept emphasising social and personal resources as well as physical capacities. The Ottawa Charter emphasized that the fundamental conditions and resources for health include education, social justice and equity (Umeasiegu et al. 2011). Taking this holistic conceptualization of heath promotion and 138 JABULANI MPOFU AND ALMON SHUMBA combining it with disability, it becomes imperative that a close look should be taken at those forms by which a discriminatory society could produce forms of health policy and practices that systematically exclude people with disabilities and once this takes place, even within the much hyped HIV/AIDS responses in vogue in the country (Helander 1998). The damage and therefore injustice would have been done. Thus efforts to include mainstream people with disabilities in health and HIV/AIDS communication care and treatment cannot be delayed at any cost. In spite of the policy pronouncements that the health systems are all-inclusive, communities still show unfriendly behavior to services provided (especially medical personnel) (Chireshe et al. 2010; Shumba and Taukobong 2009). There are no special programmes from government and the private sector targeting people with disabilities on HIV/AIDS related issues. Persistent negative attitudes of health services and community towards people with disabilities are still projected (Shumba and Taukobong 2009). Exclusion and segregation of people with disabilities living with HIV/AIDS by society as well as many African States has never been viewed as discrimination until recently (Groce 2003). Disability in India has been based on the assumption that the problems faced by people with disabilities such as in accessibility to public health information was inevitable consequences of their condition. It was recently recognised that the inferior social and economic status of people with disabilities could be a result of prejudice and society towards such people (Chireshe et al. 2010). Statement of the Problem Equalisation of opportunities for marginalized people has been on the world agenda for the past two decades. The first was the women’s decade (1975-1985) and the second was the decade for people with disabilities (1983-1992) (Shumba and Taukobong 2009). However, the generic HIV/AIDS information, education and counseling packages in vogue have had little impact on the HIV/AIDS knowledge needs of people with disabilities in developing context such as Zimbabwe. This is further compounded by the fact that health institutions in Zimbabwe still have limited mobility and communication infrastructure to meet the needs of people with disabilities living with HIV/AIDS. It is against this background that this study sought to: (a) examine the role of the Zimbabwe Patients’ Charter of Rights in enabling health care access by people with disabilities living with HIV and AIDS; and (b) explore policy translational issues influencing access to HIV and AIDS treatment and care services by people with disabilities living with HIV and AIDS.