Mental Retardation in Children Ages 6 to 16Mental retardation (MR) is a life long condition that affects 6 million American and 560,000Canadian children under the age of 14. This review discusses the definition of MR, anapproach to investigation, common comorbidities, and a general approach to management. Semin Pediatr Neurol 13:262-270 © 2006 Elsevier Inc. All rights reserved. KEYWORDS men
Mind the gap: access to arv medication, rights and the politics of scale in south africaMind the gap: Access to ARV medication, rights and the politics of scale inSouth Africa Norwegian Institute for Urban and Regional Research, Gaustadalléen 21, Oslo, Norway Global access to anti-retroviral medication (ARVs) has increased exponentially in recent years. As a relatively recent phenomenon for the global South, much knowledge is being added, but analysis of‘access’ to ARVs remains partial. The main research objective of this article is to gain a fuller picture of the range of forces constituting ‘access’ to ARVs by providing a local community case study from Ham- manskraal, South Africa. A qualitative and relational approach situates speciﬁc points of ‘local’ access to ARVs within relations stretched over space. Spatial awareness enables us to consider the reinforcing effects of local geographies upon access to health care but also simultaneously sees this in relation to non-local geographies. The concept of scale is pivotal to creating linkages across space and reveals a number of ‘gaps’ in access that otherwise might not be shown. Elaborating on the meaning of “access”to treatment produces a more rounded picture of the context that people-living-with-AIDS encounter. Amulti-scale and multi-disciplinary analysis of ‘access’ is therefore also highly informative in a relatedsense, namely, for closing the gap between human rights standards and actual implementation. Ageographical imagination is useful not only to ‘mind’ but also to close the ‘gap’ in both senses.
Ó 2010 Elsevier Ltd. All rights reserved.
The huge increase in resources and global commitment to extend access to ARVs, however, remains a relatively recent phenomenon in Assertions of the international human right to health are the global South. Understanding access to health services more increasingly impacting access to health services. One of the most generally can be of use in developing analyses that map access dramatic manifestations of this inﬂuence in recent years is the against factors deemed to enable or constrain it. Contributory exponential increase in global access to anti-retroviral medicine factors include, amongst others, the speciﬁc characteristics of places (‘ARVs’) for the treatment of AIDS. An extensive global campaign for expanding coverage was based within a rights-based idiom that roles of cultural identity, gender and conﬂict The main research question was to show what constitutes barriers in ). ‘Scaling-up’ access to treatment remains especially ‘access’ to ARVs, using a speciﬁc ﬁeld site in South Africa. A related important in regions characterised by low levels of access. In Sub- objective in identifying barriers to access was to lend these to Saharan Africa, for example, treatment coverage (that is, the per cent implementing better human rights approaches. More often than age of those who could beneﬁt from ARVs who actually receive not, incantation of human rights obligations and standards tend to them) remains inadequate at approximately ﬁfty per cent be disappointed by the unevenness of local implementation ( Barriers to access to ARVs tend to be depicted mainly as determined by limits upon ﬁnances (both personal/household and rights research and practice is therefore also increasingly interested institutional) and physical geography (as in distance to point of in the concept of ‘access’ to a particular right and therefore the need access) (Knowledge is rapidly being added to address measures in different contexts ( to deepen our understanding associated with the operationalisation ). The ‘gap’ in question is therefore two-fold: what factors constrain access to ARV services and also, in relation, what factors undermine implementation of human rights in places?An important overall consideration is whether analysis of ARVprogrammes, although situated in speciﬁc places e or points ona map e can be properly understood without a broader qualitative 0277-9536/$ e see front matter Ó 2010 Elsevier Ltd. All rights reserved.
P.S. Jones / Social Science & Medicine 74 (2012) 28e35 Theoretical approach: dynamic geographies of ‘access’ apposite case is that it is a country depicted as a global leader interms of constitutionally enshrined justiceable socio-economic A major challenge is therefore to develop a theoretical under- rights, such as access to health care () but standing that can capture a multi-faceted understanding of ‘access’.
where health indicators have worsened since 1994, mainly attrib- A geographical imagination is used to identify a fuller range of utable to HIV/AIDS. ; and see below).
processes and complexities encompassing access to health care.
In addition to health, a number of other socio-economic rights Being located in a particular context can, of course, have effects upon (land, housing, food and water, and social security) in the South health and patterns of disease. Locality, in its most obvious sense, African Constitution are often phrased in terms of “to have access denotes a speciﬁc place on the map wherein social relations and to” the right in question (It alludes to enabling institutions are characterised by a high degree of place speciﬁc a process or environment, a “qualiﬁed right,” rather than a direct embeddedness (). In recognising the special characteristics right to the service or product in question. Indeed, constitutional of places, however, two analytical problems nonetheless quickly socio-economic rights have been a critical national site for over- ). One problem lies in implying that boundaries can be drawn The challenges in local implementation concerning access to ARVs, unproblematically between the local and non-local. The second is however, remain and are illustrated through this case study from that places are not only interconnected but also interdependent. A Hammanskraal-Temba in South Africa. The approach taken is more relational understanding of places implies that ‘what makes therefore directed towards highlighting the structured spaces and a place has everything to do with “distanciated” events, processes, processes confronting (rights-based) ‘access’.
and institutions stretched out over a larger space’ (: 66). Connectivity to other places and processes renders localities ‘porous’ and therefore related to more distant geographies.
Spatial awareness certainly enables us also to consider the rein- The study draws on material from a larger qualitative case study forcing effects of local geographies upon access to health care but it that took place between 2004 and 2007 in Hammanskraal-Temba, simultaneously also sees this in relation to non-local geographies.
a peri-urban settlement approximately 40 km north of Pretoria Rethinking localities as overlapping social and spatial networks, (). Material from that more detailed case study for example, acts against conceiving of them as homogeneous and is recast in the article with the purpose being to identify separate spatial entities. It also assists in identifying the role of local characteristics of access to medication in relation to broader broader context upon localities. To give an example, the lack of geographical scales that also constitute access. Analysis derives from availability of a life saving drug in a hospital obviously implicates the two particular qualitative methodological tools: 25 semi-structured immediate local point of access. It is also associated, however, with key informant interviews in the local study area. These included the much wider chain of connectivity: to national supply and manage- full range of service providers at the ARV clinic e clinicians, dieti- ment, and even globally in terms of the global pharmaceutical cians, psycho-social and adherence support; and chair of the industry and international patent law. One of the advantages in hospital board; also key informants in the community e traditional developing analysis around spatial understandings of access is to leaders, police and others. In addition, four focus groups with People show these wider relations implicated in how a patient’s access to living with AIDS (PLWAs) consisted of approximately 50 participants AIDS drugs is enabled or constrained. An important entry point into in total, using an interpreter and transcribed into English. These discussions of understanding of the relation between local and non- groups consisted of members of different support groups (a local local geographies is the concept of scale.
HIV/AIDS hospice, and the ARV clinic support group, in particular)but also as a control, one other further from the clinic. Limitations of the data collection include the sampling of PLWAs (based on supportgroups rather than those who were not supported) but who were Geographic scale is pivotal to conceptualising more dynamic therefore more likely to be using services and more open about their geographies of access. A highly textured theoretical debate has status. Two other focus groups, consisting of non-PLWAs, provided taken place within human geography in recent years with different an important control and veriﬁcation function to the key informants understandings of scale being the substance of this debate.
and PLWAs. Policy documents, local census data and secondary Different social actors by working at different spatial levels can material, such as newspaper articles, and academic work, supple- change authority and power and therefore alter access to resources mented the qualitative data. A good degree of triangulation was ). The implication for under-standing the relationship between the social and the spatial is thatthey are mutually reinforcing. Scale matters and that, in recognising this; a more plural, relational meaning of scale is required ( Key health indicators in South Africa.
). Such an understanding of scale as relational and embedded Life expectancy (both sexes, years) 1990, 2000, 2008 in other scales provides a more simultaneous conception of scale Under-5 mortality (both sexes, per 1000 live births) along side other scales. These discussions of scale have “freed our narratives from the singular and limiting preoccupation of locality Maternal mortality (per 100,000 live births) 2000 on the one hand and of globality on the other” (: 400).
HIV prevalence, national level (based on antenatal Such a multilevel understanding of localities has important impli- cations for understanding ‘access’ to ARVs.
Prevalence according to selected Provinces (based “Access,” can itself be understood as “able to get, have, or use something.” “To have access” in terms of a rights-based claim means that a government must facilitate access or create an enabling environment for everyone to access a service ( Struggles over access to retroviral medication (ARVs) in South Africa have gained global notoriety during former President Thabo Mbeki’s period as leader. What makes South Africa such an P.S. Jones / Social Science & Medicine 74 (2012) 28e35 created by different qualitative methods and ensured the validity of furthermore, in burdens of ill-health encountered. Jubilee hospital the data collected. The project followed the ethical guidelines used lay in the North West, one of the more poorly resourced provinces, by the local partner, the Centre for the Study of AIDS, University of with large rural populations and which had also experienced over Pretoria. Information was given to participants concerning the 30 years of autocratic rule (as a Bantustan). It was also a province, purpose of the study and consent given by participants, especially where, following the quotation, above, ARVs came relatively late, PLWAs, whose real names have been changed.
partly due to the ruling African National Congress political controland whose national leaders at that time opposed ARVs. Second, the cross province location of Hammanskraal-Temba exacerbated pooraccess because many areas of service provision fell between prov- inces. Often either province (North West and Gauteng) used thelocation’s geographical uncertainty as a reason not to commit scarce Like many other areas in post-apartheid South Africa, Ham- resources while the uncertainty continued about its ﬁnal jurisdic- manskraal-Temba, has been characterised by its highly complex tion. Despite these scale disadvantages, as ‘rollout’ of ARVs gathered political, socio-economic, and cultural geography. Much of the pace, the local ARV clinic at Jubilee could also use provincial scale to transformation post-1994 is directed toward untangling the intri- cate spatial webs of the apartheid era e namely provincial,Bantustan and municipal boundaries. Post-apartheid municipali- ties were demarcated in 2000 and in the amalgamation of someplaces in former Bophuthatswana (a nominally ‘independent’ From 1994, as mentioned, the district hospital was administered Bantustan created in the apartheid era) areas within the newly by the North West province. ARV services began at the Wellness formed City of Tshwane (Pretoria) Metropolitan Council, whilst clinic, with the initiation of treatment eventually taking place in incorporated areas were still under provincial jurisdiction of the September 2005. I was unable to obtain hard data at clinic level but North West province. This resulted in what are termed “cross- in discussions with clinic staff, however, the following breakdown border” municipalities, forming a northern and western peri-urban was observed. First, the ratio of female to male patients appears to fringe to Pretoria. The ofﬁcial motivation for the amalgamation was be approximately 60 per cent to 40 per cent. Clinic staff identiﬁed as to meet the developmental needs of these disadvantaged areas by particularly problematic the lack of men coming forward for including them within the tax base and local economy of a well- treatment. Approximately 10 per cent of patients were children.
The majority of patients was not employed and was given nutri- Undoubtedly, these were important efforts to create geographies of tional substitutes due to food insecurity. Despite high numbers of inclusion rather than exclusion but despite these worthy intentions foreigners in the area, they were totally underrepresented at the some localities therefore remain caught between jurisdictions.
clinic because they were effectively excluded from access due to Hammanskraal-Temba is an extensive geographic area that is non-residency status. According to the Senior Registrar, there has often taken by locals and others to mean also several surrounding been a dramatic increase in ARV patient numbers, almost by ten villages and settlements, with total population approximately fold, from 966 in 2006e8729 adults and children currently enrolled 150,000. Some of the major characteristics are that the area is on treatment as at 31 April 2010. These rapid changes inevitably extremely ethnically diverse and with cultural practices (such as produce signiﬁcant challenges for the clinic and hospital.
traditional marriage and traditional leadership) that tend to be The hospital consistently featured negatively in the interviews associated more with rural South Africa. It also has profound with PLWAs (Indeed, the clear majority of responses developmental challenges with large variations in access to water across groups of PLWAs and also those not living with HIV or AIDS and electricity based on proximity to the ‘urban’ core of the indicated widespread dissatisfaction with health services at the settlement. Economically, it is estimated that on average across the district hospital. Built in the 1960s, and under management of area, approximately 66 per cent adults are either unemployed or a Baptist mission, poor services have long been associated with it not ofﬁcially economically active. The area is therefore, in general, and reﬂect the more general neglect of and lack of resourcing for “peri-urban” socio-economically and in terms of access to services rural health care. According to one resident, the quality of service did improve during the Bophuthatswana era, with more nurses and Cross-border governance has impacted greatly upon service shorter waiting times that were also generally on time if you delivery, from responsibility for trafﬁc light maintenance, police wished to see a doctor. Good care and also medication were telephone help lines, to the local hospital and access to ARVs. In apparently always available. The quality appears to have declined 2005, the confused jurisdictional imprint upon health service delivery was related to a highly spatialised delay in rollout of ARV These resident views therefore reﬂect broader shifts in national drugs. For a period access to ARVs was restricted to a handful of health policy that is set ‘up stream’ from this locality. Studies of the selected sites in South Africa ), which did not include restructuring of national health reveal that since 1994, there has Temba-Hammanskraal in the North West Province: been a decline in hospital staff numbers, including, critically, a sharpdecline in the number of nurses, and prioritisation of the strength- The district hospital is in the North West province and falls short of being part of Gauteng by a millimetre, the width of a fence. On provincial maps, the boundary is literally the hospital’s southern qualitative terms in responses by long-term residents with regards fence. Most mornings, on his way to the clinic, Robinson [the to the profound sense of changes in attitudes of nursing staff.
pseudonym given to the doctor] drove across the boundary line Whereas previously, nurses commanded great respect and were between living and dying. 347, in ).
well liked, now, even when the nurses can see that a person is This quotation captures the stark nature of the challenges con- critical, they will still take their time before attending to the patient.
fronting Hammanskraal-Temba. Provincial scale has numerous Complaints raised by people in the focus groups who were not living implications for ‘access’ in Hammanskraal-Temba. First, there were with AIDS concerning the waiting periods, the lack of doctors already large variations existing across provinces in terms of available and the irregular supply of drugs. They were generally ﬁnancial and human resource capacity to implement policies and, dissatisﬁed with the treatment that they received when visiting the P.S. Jones / Social Science & Medicine 74 (2012) 28e35 hospital. The implication can be quite dramatic for access. As one breaches of conﬁdentiality directed against employees (not only female social club member said about being ill and having to go to health but also more generally) became apparent. Broader staffemanagement relations were structured also by national levelpolicy and planning to reﬂect external ‘up stream’ constraints, such I won’t go there, I will stay away.
as stafﬁng and budgets, but also speciﬁc local characteristics. In this Getting the wrong medication and also being placed in speciﬁc speciﬁc case, hospital management had traces of authoritarianism “HIV” wards were additional issues. But it is the oft-cited tendency characteristic of the lack of accountability from the Bophuthat- to be neglected that was particularly troubling for PLWAs. Although swana era. Upon approaching management a situation of bullying the inadequate care cited appeared generalised, speciﬁc AIDS- of employees appeared to overshadow any sense of ethical enti- related discriminatory practices were also common tlement workers may have (in Jones, 2009).
‘Access’ therefore implicates hospital governance more The Wellness clinic was newly created. Both successive heads of generally. This starts with one of the most important entry points to Wellness described their various frustrations regarding attempts to the hospital e the need to negotiate hospital clerks. Clerks were collaborate with the hospital management. Studies indicate the regarded as surveying patient ﬁles unnecessarily and gossiping lack of the hospital manager’s control over administrative decision- about their HIV status. The implication was that this behaviour making in an overly centralised system e hence with great powers impacts upon the people’s conﬁdence in whether to go back to the for, often autocratic, provincial decision-makers However, within this district hospital, managersappeared to exert a lot of power. Wellness staff experienced frus- people.afraid to go to the clinic.they throw the medication tration, with collaboration initiatives becoming unnecessary power away. (Person living with HIV/AIDS, 2006) tussles, particularly concerning the management’s reluctance to Patients at Wellness clinic were acutely aware of the problems working with “outside” institutions. One trade union respondent in negotiating care and treatment on wards outside the ARV clinic.
highlighted the lack of transparency and lack of consultation In some other wards, the level of care given can be inﬂuenced by associated with a culture of institutional secrecy. I was told that, whether a patient is deemed “good” in terms of their level of “they [the hospital] don’t like to transform.” Recently, the hospital adherence or not to TB medication. In one instance the harsh has been transferred to the jurisdiction of the province of Gauteng, treatment was due to the nurses’ exasperation that the patient had with high hopes that these management issues would be resolved.
apparently failed, for a second time, to adhere to TB medication. A The obstacles posed by the local hospital indicate the role of basic level of care and compassion was deemed to be lacking. This micro-geographies of institutions and organisations in shaping was linked to a strong sense of injustice by almost all in the focus ‘access’. Decision-making, resource allocation and resistance to collaboration with outside agencies were all imprinted by the place These concerns were also shared by some staff. The previous effects of local governance of the hospital, which deeply impacted clinical head of Wellness had himself been concerned about the staffemanager relations. Management arguably used the local scale treatment of his patients at the hospital. He also discovered that consciously to keep decision-making as autonomous as possible.
a special “code 279” was being used to identify AIDS patients on Using a relational analysis, however, again shows that other scales their ﬁles (since removed). Often, he claimed, these patients would can also be used to manoevre such ‘local’ obstacles. As the ARV be placed deliberately in the last cubicle on a ward, be seen by rollout proceeded, the provincial administration, for example, junior doctors and would have minimal care (see became more proactive as it was concerned about meeting targets The consequences of local scale of access at Jubilee are apparent for number enrolled. The head of the clinic travelled to provincial in the speciﬁc challenges associated with rural and semi-urban headquarters to tap into the concerns expressed at the provinicial health care settings. Not least, severe local poverty and human scale about slow enrollment. By demonstrating how enrollment resource challenges at the hospital are of particular concern. In could be increased through collaboration with outside organisa- addition to these place ‘effects’, non-local factors, i.e. national policy tions (who would fund human resource positions), some leverage changes, have clearly impacted upon local characteristics. The was provided over the local management. This use of the prov- struggle to retain staff and to ﬁll vacancies is an often-cited struc- inicial scale therefore, at least on this occasion, circumvented local tural problem confronting South African health services. These difﬁculties are disproportionately experienced in more rural areas). This has animpact on both current and future patients’ level of care. The turn- Socio-cultural attitudes and national scale politics over in staff can be critical for some patients in terms of adherenceand other issues in quality of care and compounded by place ‘effects’.
Even before the patient approaches the hospital, social attitudes vested in individual perceptions of ARVs are another critical dimension in shaping access. ARVs tended to be associated withdeath and desperation in that people take ARVs as a last resort The explanations for why patients were apparently treated when they are already in an advanced stage of illness. One current badly in the hospital (rather than Wellness) are indeed compli- patient at the Wellness clinic relayed that she had been “very cated. They span structural, historical, and cultural dynamics. While scared when people talked about ARVs” because she thought that there is not the space to provide much detail here (see ), people only take then when they are already dying. People living the overall point to emphasise is that health care workers, whilst with AIDS talked about people they knew who were adamant they implicated in violations, may also be victims themselves, along would not take ARVs because they do not help and actually kill. This with patients, within hospitals described as “highly stressed insti- appears to reﬂect, as recounted by the respondents themselves, a fundamental problem in that people are going to access ARVs very already been mentioned as a critical factor in affecting the quality of late, when they are already seen as ill, even terminal. Many care and are a notable ‘place effect’. In discussions with Congress of recounted how they only found out about ARVs when they were ill South African Trade Unions (COSATU) representatives, a litany of and had been tested and introduced to the Wellness program. This grievances having to do with forced testing, stigmatisation, and represents something of a catch-22: ARVs remain associated with P.S. Jones / Social Science & Medicine 74 (2012) 28e35 death but people only hear about them when they have already goes both ways, namely, with the socio-cultural variations that approached the clinic, usually after having fallen ill exist between places. In other words, the implication that strong Some of the more commonly cited negative attitudes to ARVs national leadership taken on HIV/AIDS, should somehow auto- involve side effects and associated rumors. ARVs are associated matically over-ride deep-lying local perceptions and beliefs, is false.
with “problems” and this is what people hear about. Others indi- These locally rooted identities pose a particular challenge to the cated their fear at being told by health care workers that the ARVs ‘universal’ scale at which human rights standards are deﬁned.
would be for life, “then I ask myself this is for life and what happensif I miss the time [when I should take pills]?” (“Sibo”). Uncertainties National clinical guidelines for local access circulate within this community, culminating for one patient’sassociation of ARVs with being a “gamble.” The head of Wellness, Jubilee, they want many things before you can get ARVs Dr. Mathibedi, explained that when patients are about to start treatment, the majority does so with reservations. The mostcommon questions concern the toxicity of ARVs and especially Clinical criteria for accessing ARVs, such as CD4 counts and viral whether they work. The dietician at Wellness also conﬁrmed these load tests, are relatively well established. A much more vague area perceptions that ARVs “are dangerous or they are toxic” and reﬂect concerns in what circumstances non-clinical factors should also be considered in deﬁning eligibility for access to ARVs. A critical caveat There is a resilient stigma associated with HIV/AIDS that is to local access of ARVs concerns the national policy process transferred on to ARVs themselves (What is signiﬁcant surrounding national treatment and clinical guidelines. In South in the discussion of access is how this stigma is also constructed by Africa, treatment criteria are stated according to the “National anti- non-local debates occurring at national scales. Controversy, for retroviral treatment guidelines,” which, more recently, in 2008, example, has been a deﬁning feature of responses to HIV/AIDS.
were revised in the “Guidelines for the management of HIV & AIDS Former President Mbeki and his Minister of Health, Manto Tshaba- in health facilities.” The two main areas of criteria are both clinical lala-Msimang not only held very negative views of ARVs, depicting and non-clinical. In the revised guidelines, Mr. T.D. Mseleku, then them as highly toxic but also promoted various discredited treat- the director-general of the Department of Health, states that ment ‘alternatives’. Such views, although expressed at national level, adherence should receive even greater attention (2008: 5) as non- had apparently affected preparations at the local hospital with some clinical criteria than it did in previous guidelines (see health care and social workers alluding to the role of politics: In drawing attention to the emphasis given to adherence, the purpose is in no way to deny the obvious beneﬁts of adhering.
the whole ARV thing, I think it had too much controversy Rather, it is to suggest whether this can ask an awful lot of some around it and that is actually affecting the delivery of service- patients who are in any case those least likely to comply. A para- s.it is too political.(social worker).
digm of “community mobilization” and “participation” Local patients’ attitudes to ARVs also related to national level while intrinsically important implies that a degree of disclosure is apparently preferred. This should therefore raise the question of what burdens these criteria, if exercised literally, may have on our leaders should not say negative things about ARVs. People were going to go for ARVs freely without any fear. But we are not Respondents, for example, citied anxieties related to the requirement they heard about regarding adherence. This implied, Patients suggested information was limited because “no [one] for them, that friends or family also need to be involved: beyond Wellness clinic are talking about them, the general clinics You know, if you hear about something you don’t know about, they don’t talk about them” (“Florence”). The scant access to there are so many thing that come to your mind. The ﬁrst time I information in surrounding rural areas was considered a particular heard about ARVs was ‘come with your buddies.’ I began asking disadvantageous ‘gap’, with suggestions that this is “why the myself many questions, why did they want my buddies? person is weak that he cannot take the ARVs, you see. It is because of the information that we get” (“Thando”). Another dimension tothe paucity of information was that it served to encourage specu- Another was scared to access ARVs because she was told her lation about ARVs. One respondent expressed concern at what they parents had to accompany her to the clinic. Generally, while most felt was perhaps their government deliberately hiding information were encouraged to disclose, there was a wide variety of experi- from them. The point is that local scale of ‘access’ is also impacted ences in doing so. For most, the beneﬁts of disclosing were by national attitudes and utterances by leaders and politics of ARVs.
apparent, especially in accompanying or being accompanied by This was also true in terms of the reinforcing of particular cultural a “buddy”. So, disclosure and support reﬂect the ideal of mutual interpretations of treatment, and, as mentioned, so-called ‘alter- support and, hopefully, that both appear to go hand in hand for natives’. Some of these alternatives included illegal trials for multi- adherence. Even when the patient does not disclose, the clinic can vitamins and herbal based treatments. It was the former Minister of make an assessment and the patient may, as suggested, nonethe- Health’s promotion of a concoction of lemon, garlic, olive oil and less receive treatment. Some, however, were surprised that African potato, as a sort of ‘home grown’ remedy (in a form also sold someone got treatment when their own family did not know: “Yah, as “Africa’s solution” product) that was one of the most visible so- if you do not come with your family they are not going to give you your medication” (“Thandi”). Indeed, there is a cost in disclosing While the depth and spread of traditional and alternative that can be an immense burden in seeking treatment. This was duly medication cannot solely be attributed to the AIDS dissidents in acknowledged by the head of clinic, who suggested that disclosure government, the latter undoubtedly contributed to sowing the did create “domestic” problems for “a minority of patients.” seeds of confusion in this community. The contested nature of ARVs Reﬂecting the emphasis upon disclosure promoted at the clinic, and the generally negative debates about them and broader many respondents claim that they were told to disclose, or at least explanations of HIV/AIDS itself surely play into pre-existing strong this was their perception. There is inevitably a thin line between local belief systems. a rights-based approach, which was found encouragement of disclosure and the patient’s perception of this as lacking in the Mbeki era. Second, the relational dynamic, however, a prerequisite for access. But many patients interpret disclosure as P.S. Jones / Social Science & Medicine 74 (2012) 28e35 necessary in terms of needing to be accompanied before they could recalled how she ‘skips’ treatment appointments because of lack of receive ARVs. One claimed that they could not go alone to get funds to travel. Of ten patients who the clerk tells the social worker medication, whereas another was not asked to bring anyone. For do not come on a given day, typically, she says that nine of these are some, a signed declaration was necessary, adding to difﬁculties in due to lack of transport money. The obvious issue of distance was Therefore, on one level, it certainly appears that disclosure can be You cannot walk from your place of residence to the hospital.
a problematic and painful experience for people living with AIDS that can heighten exclusion and “domestic problems.” But on So you miss appointments, for example? (Facilitator) another level, does this necessarily mean that people living with Yah! I do miss appointments. (“Thandi”).
AIDS are actively turned away or forced to disclose? Interviews withclinic staff clearly demonstrate that the clinic does not think so and “T” spoke about his own transport problems “[P]articularly if I am that they have been cautious in handling this issue. But, nonetheless, having problems, side effects, or even to go back to collect treat- people living with AIDS claimed that they had seen others turned ment.” The implication of having to fetch treatment regularly proved away from the hospital because, apparently, “they couldn’t answer to be devastating for one patient, a domestic worker. She told of how questions.” As the following exchange reveals (in it is she had lost her job because of the lack of ﬂexibility in the system for not uncommon to know of people refused treatment: treatment provision and subsequent need for time from work spentqueuing. When she inquired about getting treatment for a month she was told: “There is no hospital that will ever give you monthly treatment. I went there to get my treatment every second week.
They [the clinic] keep on postponing. (“Sibo”) They do not give you any [more] treatment. You have to come back In one case, “Florence” confronted clinic staff to explain why now and then. Imagine, I was working as a domestic worker and had someone she had seen was turned away from the clinic. The to miss work every Tuesday to come and get the treatment? So I was response given to her was that they had not adhered to a course of ﬁred. That is not fair” (“Gloria”) (in ).
Bactrim (an anti-biotic given to those enrolling for ARV treatment).
The signiﬁcance of geographical analysis for understanding The geographical signiﬁcance for understanding access is access is perhaps most apparent in these discussions of physical therefore that policies and guidelines set at a national scale, which distance to the point of access. In recent years, the inﬂuence of may appear intrinsically constructive, are misinterpreted or even geography has been acknowledged in efforts to decentralise points abused when it comes to the local operationalisation. Some of access for ARVs. While this undoubtedly alleviates some of the observers indicate that, for example, judgemental attitudes of burden for patients, and indeed hospital clinics, localised access health care workers may be projected onto potential patients, in raises additional concerns. One, for example, concerns the ongoing effect ﬁltering out those ‘deserving’ from the ‘undeserving’. Lack of role of stigma and community level gossip that may be worsened at relational understanding of policy setting and implementation can more localised community level ARV service delivery points.
Another concerns the reality of highly mobile populations and that a more relational understanding of ARV access would thereforecontribute to greater institutional ﬂexibility for patients involved in seasonal, circular or other types of shorter or long-term migrationor visits.
Across all people interviewed and focus groups, when asked about key characteristics of the area, most e if not almost all e associate it with high levels of poverty and unemployment Unemployment is endemic, particularly among school- A multi-scale relational approach enables a more dynamic leavers and younger people. Another key and related dynamic analysis of ’access’ as shown in the case study.
concerns dismissals from work, poor job security, and problems First, a geographic approach, in its most basic sense, shows the with receiving employment-related payouts such as pensions.
importance of local context if implementation of ‘universal’ rights Often, links were also made between poverty, joblessness, and and policies is to be achieved. The case study showed the speciﬁc vulnerability to HIV/AIDS. In such a context, it should appear challenges associated with a semi-urban settlement, amongst necessary to explore what challenges are posed by the political others, in terms of the severely constrained human resources at the economy of the locality to ARV programmes. Concerns were stated hospital, poverty, limited information, and, especially, physical as follows, in order of the most commonly cited. First, food, money, distance of patients to clinics. Furthermore, another lesson for and transport were all cited most and equally signiﬁcantly. The understanding ‘access’ concerns the governance of health facilities dietician at Wellness, who, in response to being asked if nutrition and, in the case study, how exclusionary decision-making prevented was a problem confronting patients, also conﬁrmed the problem of the ARV clinic from initiating relations with other local actors.
inadequate nutrition as a “huge problem.” She estimated that of the Second, a geographical analysis is therefore also concerned with ten people she sees daily, nine of them would receive nutritional the different ﬂows and relational networks that shape ‘places’. The supplements and that “it is only one out of the ten I see a day that jurisdictional power allocated at different scales is an obvious case you ﬁnd they do not need supplements.” Second, these were fol- in point illustrated by the provincial administration’s initial deci- lowed by the importance of bringing treatment closer through sion not to provide access to ARVs at the hospital. In the case study, decentralisation of ARV access points to local communities. Third, the issue of being a ‘cross-province’ locality was a graphic instance also cited, again in decreasing signiﬁcance, social grants, clean of the imprint of scale with services literally falling between water (particularly important for one rural dweller), and costs jurisdictions. It has been argued that a geographical imagination involved in eating healthy. Fourth, transport is another major issue, can therefore capture both the importance of context and also as mentioned, with 66 per cent of those speciﬁcally citing it, also a more relational understanding of places as the inter-linkages living outside of the “core” area of the hospital. One respondent between scales. Places both shape but also more often have their mentioned the burden of having to travel 23 km to Wellness clinic room for manoeuvre shaped by scale. The roles of national when they did not have money to do this regularly. Another economic and health policy, treatment guidelines, and, especially, P.S. Jones / Social Science & Medicine 74 (2012) 28e35 national leadership all constitute local access. The complicated very different local interpretations and challenges patients relationship between local beliefs and attitudes and national level leadership highlighted the dynamic linkage between both scales.
All of these ﬁndings suggest that when a rights-based approach, The implication is that focusing attention on one or the other fails like treatment programmes, engages with a geographical awareness to establish the full picture shaping views of health and illness. In new approaches can be envisaged. While the appeal of human rights relation, whereas a rights-based approach focuses on the highest reasoning is usually anchored in legal norms, these also should be attainable level of care at modern health facilities, a geographic subject to local circumstances and also the social, economic, political analysis showed the tendency of patients to approach ﬁrst other and cultural relations that extend across scales. A more multi- spaces of care, especially traditional alternatives. By highlighting disciplinary approach does not replace the normative nor legal these linkages an important ‘gap’ in a rights-based approach can be strength of human rights, but emboldens it. Elaborating on the overcome. In addition, the mobility of patients across different meaning of “access” to treatment, and by implication a rights-based places poses particular challenges for creating more ﬂexible and approach, produces a more rounded picture of the dilemmas, less rigid place bound ‘access’.
anxieties, community, and institutional and contextual pressures e Third, a geographical approach is particularly useful in the grey areas e that people-living-with-AIDS encounter. It is acknowledging “how actors interests may be bound to particular precisely such spaces and the complicated geographic mosaics they levels, spatial relationships and places” (The comprise, that human rights practice and research should increas- usefulness of a scale approach to understanding access is that it can ingly engage with in order to genuinely respect, protect and fulﬁl the show the interrelated spaces that shape patient care but are not human right to health in the years to come.
reducible to the latter. These scales are also constantly remade andcontested. The hospital administration, for example, attempted to conﬁne governance of ‘access’ to the local scale of the hospital. Butthe example of the local clinic actively using the provincial scale I would like to thank the Centre for the Study of HIV/AIDS, showed that actors can shift, or ‘jump’, between scales to exert University of Pretoria, for its collaboration over the years and advantage and leverage. Geographical analysis also “helps make the without whom this article and associated work would not have case for more innovative mechanisms” and approaches. These mechanisms should be premised upon greaterattention towards multi-scale approaches that seek to disruptestablished scale constraints to instead focus upon thinking and acting at a variety of different scales. The implication of suchanalysis is for ‘scaling-up’ from localities to form broader alliances A’desky, A. (2004). Moving mountains: The race to treat global AIDS. Verso Books.
and to build capacity to act in different arenas at different levels.
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redress for rights violations. A locally driven project, Tswelopele Department of Health (2008) ’Draft Guidelines for the management of HIV and also links to other levels through the networks, resources and AIDS in health facilities'. Pretoria.
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tions is that the patient focus of a rights-based approach should be von Holdt, K., & Murphy, M. (2007). Public hospitals in South Africa: stressed institutions, disempowered management. In Buhlungu, S., Daniel, J., Southall, S., linked to other relational dimensions, as mentioned above. A & Lutchman, J. (Eds.), State of the Nation: South Africa (pp. 312e341). HSRC Press.
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Jones, P. S. (2005). “A test of governance”: rights-based struggles and the politics of access. The case study showed how relations between patients and HIV/AIDS policy in South Africa. Political Geography, 2(4), 419e447.
health care providers, in turn, are also conditioned by staff and Jones, P. S. (2009). AIDS treatment and human rights in context. New York: Palgrave management relations. Focusing only on patient rights in a right to Jones, P. S., & Zuberi, F. (2005). A long way from there to here: human rights health perspective can obscure the speciﬁc challenges encountered approaches to HIV/AIDS in a local setting. HIV/AIDS Policy and Law Review, 10(1), by health care providers. In seeking to blame and even prosecute health care workers, for example, a rights-based approach might Khoza, S. (2007). Socio-economic rights in South Africa: A resource book. Community even be counterproductive and result in further polarisation of Law Centre, University of the Western Cape.
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IICN Registrar’s Neuroscience 2010 Four Seasons Hotel, Dublin November 5th 2010 RESEARCH PRESENTATIONS (12 mins: 10 mins presentation + 2 mins Qs) 10.40 Familial ALS: Defining the true rate of familial ALS, assessing the role of chance occurrence within kindreds, and proposing criteria for familial ALS. Susan Byrne1,2, Cathal Walsh1, Catherine Lynch2, Orla Hardiman1,