EXPLORE THE PROVISION OF PAEDIATRIC ANTIRETROVIRAL TREATMENT IN A RESOURCE POOR SETTING IN CAMBODIA, AND EVALUATE THE IMPORTANCE OF CULTURALLY APPROPRIATE INTERVENTIONS.
London School of Hygiene and Tropical Medicine
Diploma in Tropical Nursing Course
Abbreviations and Definitions.
The World Health Organisation (WHO) 3 by 5 initiative aimed to treat 3 million HIV positive people worldwide with antiretroviral medication (ARV) by 2005 (WHO 2003). Although these targets were not met (Carter 2006), a renewed commitment to achieve universal access to antiretroviral medication by 2010 was made at the G8 summit. Treatment scale-up for the human immunodeficiency virus (HIV) has become a political priority. However, "medicines are not magic bullets" (Razum and Okoye 2001 p421) and successful treatment requires a health infrastructure to support and sustain it in the long term, alongside treatment education that is sensitive and relevant to local culture and which includes adherence support.
The genesis of this assignment came from the observation of ARV treatment initiation for an HIV+ child in Cambodia. Reference will be made to this case study to provide the context for analysis of the importance of culturally appropriate interventions.
ARV provision in resource poor settings will be discussed briefly, specifically with reference to adherence, followed by an exploration of caregiver adherence in particular relation to cultural values, beliefs and potential barriers. Focus will be given to cultural conceptions of time and appropriate treatment education, with critical analysis of interventions observed. Research has been drawn from Asia and Khmer refugee populations, with occasional reference to other contexts for comparative analysis, while remaining mindful of possible limitations. Examples of culturally appropriate care will be outlined, and conclusions synthesised with suggestions for future interventions.
Case study ( Pseudonyms have been used).
The observed case study concerns paediatric ARV treatment initiation, and involves a single mother Sompal and her son Tuk, who live in a rural village in North East Cambodia.
Tuk is HIV positive and needs antiretroviral medication which is available from the children's hospital in the town. Travel to the town on a regular basis is difficult for Sompal. The outreach team from the hospital can supply the medication, but need to teach Sompal the ARV regime to ensure successful administration to her son.
Sompal's daily life and routines are set by the availability of sunlight- a practical and suitable method for her agrarian, farming lifestyle. Clocks and watches are unfamiliar, rarely understood and almost seldom owned by the Khmer villagers. Sompal is illiterate, having had only elementary education. She has no supportive relatives; her brother had previously bribed her of the rice donated by the world food programme.
The regime is a twice daily dose of antiretroviral medicine. The outreach team, comprising local and international staff, deicide to teach Sompal the numbers 1-10. They then ask her which number she is able to remember. Sompal can recall the number 7, but confuses 3 with 8, and 5 with 6. Finally, the team give her a digital watch and instruct her to give the ARV medication to her son every time she sees the number 7 on the watch.
Treating children with HIV is complicated by immature and vulnerable immune systems, poor paediatric ARV provision in resource poor settings, and a lack of specific treatment targets (WHO 2006,UNAIDS 2005, Smart 2005).
Providing treatment in resource poor settings is essential to ensure equitable access to ARVs. However, critics claim that ARVs are inappropriate in those settings which lack adequate health infrastructure (Holmes 2004). Believing such populations to be at high risk of non-adherence, they discuss the potential public health risk from resistant viral strains. However, there is evidence to suggest that those in resource poor settings adhere well (Taisse et al 2003, Farmer 2001a). Indeed, Koenig et al (2004) found community support facilitated good adherence in Haiti. The same community structure may be unavailable in Cambodia, but Koenig et al's (2004) study illustrates the possibilities for successful interventions. Furthermore, lack of health infrastructure should not delay treatment (Mukherjee et al 2003) providing adherence issues are addressed. The relationship between non-adherence and resistance is not straight forward, and treatment naïve populations in resource poor settings may actually be less likely to develop drug resistance than treatment experienced populations elsewhere (Bangsberg et al 2004, Lange et al 2004).
Directly observed therapy (DOT) strategies have been suggested to support adherence to ARVs in resource poor settings (Farmer 2001b), and have shown considerable success in treating Tuberculosis (TB). It is important however to understand the major differences between HIV and TB to which DOT strategies have been previously targeted. TB is more highly infectious than HIV and has a shorter treatment duration, whereas ARV treatment is a lifelong commitment. There are further concerns from Liechty and Bangsberg (2003) that DOT strategies may pose a barrier to ARV access, and may compromise privacy which could result in increased stigmatisation. Moatti et al (2004) suggest peer support as a tool for adherence. However, this requires peer acceptance of HIV which is still unavailable in some communities where stigma prevails.
Caregiver commitment to adherence in paediatric ARV treatment is a complex and dynamic construct. Wrubel et al (2005 p2430) describe it as "an interactive process in which the life context of the mother's experiences, attitudes and feelings impact adherence". Reddington et al (2000) highlight caregiver fear of loss of privacy affecting adherence. Similarly, stigma negatively influences adherence practices. Conrad (1985) believes patient directed changes in medication for example non-adherence, is a form of "destigmatisation" (ibid p36).
Acceptance of HIV and ability to cope are important in adherence, and yet are challenged by stigmatised environments and caregiver guilt. When vertical transmission is the route of infection, guilt is common and can directly affect adherence as Wrubel (2005 p2427) explains, "medications serve as a persistent reminder of the source of illness".
Medication palatability, form and side-effects, in addition to caregiver-child relationships also affect adherence. While acknowledged as important factors, a full exploration of these issues is beyond the scope of this assignment.
There are beliefs that patients with low literacy will be less able to adhere (Kalichman et al 1999). Illiteracy is common in Cambodia (appendix 1). However, Kalichman et al's (1999) results, derived from only two days adherence practice are weak. Adherence fluctuates over time, thus two days is insufficient to draw accurate or conclusive results.
The social and cultural environment influences treatment, and contributes to the "total drug effect" (Helman 2000 p136).
Cambodia's cultural and historical context is outlined in appendix 1, and directly affects treatment provision and success. For example, the destruction of societal trust following the Khmer Rouge genocide could become a barrier to treatment access and healthcare (DFID 2005). Hamill and Dickey's (2005) research, although derived from a different cultural group, also emphasises the importance of considering historical context and culture.
"Culture is the lens through which we see everything" (Narayan 1997b p664). Thus, cultural beliefs about medication will affect adherence. Research reveals that Asian cultures are more likely to perceive western medication as harmful (Horne et al 2004). Shimada et al (1995) found similar beliefs of 'strong medicine' and non-adherence among Asians.
Understanding linguistic metaphors is important to prevent misunderstanding when communicating health (Carey Jackson et al 1997). Non-verbal emotional support may facilitate this (Ngo-Metzger et al 2003), reduce feelings of isolation and thus facilitate caregiver adherence. However, poverty increases isolation, and in Cambodia female headed households suffer poverty most. Brouwer et al (2000) found poverty a concern of caregivers in Uganda which adversely affected adherence.
Cultural childrearing practices are important to appreciate in the context of paediatric treatment provision and adherence, as developmental expectations and trajectories are different between cultures, and can affect the degree of responsibility a child is given for his own treatment. In Cambodia childrearing practices are linked closely to Buddhism, and emphasise family membership over individual identity (Kelley 1996). Theravada Buddhism also mediates how pain and suffering is interpreted and experienced (Uehara 2001); disease is believed to result from 'spiritual imbalance'. Spirit and ancient animist beliefs are held alongside Buddhism. Furthermore, Buddhism focuses on an internal personal concept of time, in contrast to an external imposed western time (Hall 1984 cited in Helman 1992).
Cultural constructions of time significantly affect treatment regimes, yet are seldom considered in planning healthcare interventions. Asian cultures are present-time orientated and thus often fail to appreciate the benefit of adhering to treatment to ensure future health outcomes (Brown and Segal 1996). Helman (2005) differentiates between monochronic and polychronic time. Monochronic - the western conception- is a linear representation symbolised by the clock, watch and calendar. Whereas, polychronic, common in agrarian societies views time in a cyclical way, and emphasises people, relationships and family (Helman 2005.) Clock time has a "mystical emphasis on numbers" and "symbolises control, conformity and cooperation" (Helman 1992 p43). According to this theory Khmers orientated to an agrarian, polychronic time will tend to act 'when the time is right' (Helman 2005).
Clearly, cultural time orientation should determine how caregivers are taught ARV medication regimens, because time keeping is vital to adherence. Cultural beliefs should shape culturally appropriate health interventions bearing in mind that "a person is not a stereotype of their cultural heritage" (Narayan 1997a pg 464), and an understanding must also be gained at an individual level (if resources are available to establish this). In the case study outlined, the outreach team completed a social assessment to determine who would be the most appropriate adult to administer ARV treatment to the child. However, the barriers to treatment adherence experienced by the mother, and the importance of her time orientation were not considered. While it is appreciated that thorough analysis of every treatment context, and caregiver adherence potential is unrealistic, a force field model (appendix 2) can highlight barriers and facilitators to treatment adherence, and provide a useful tool for planning treatment preparation and initiation.
The imposition of a western conception of time was not culturally appropriate in this example. Furthermore, giving a digital watch failed to appreciate Sompal's social circumstance; poverty may well have been a greater priority and more immediate need than treatment, and the watch sold for food. Alternatively, considering her previous vulnerability, the watch may have been stolen. Moreover, teaching the "mystical numbers" (Helman 1992 p40) was outside Sompal's realm of experience.
Adherence is dynamic and liable to fluctuate over time, yet is fundamental to treatment success. Therefore, linking medication to something that is already relevant to the caregiver's daily life or routine is likely to be better retained and followed long term (Barnabas 1995, Werner 1982). Sunrise and sunset are possible cues for a twice daily regime in Cambodia as there is little seasonal variation. However, Ong (1995) found that sunrise/sunset cues represented pictorially were misread by Khmer patients. However, this misrepresentation reflects the earlier point concerning differences between polychronic and monochronic time (Helman 2005); the Khmers misunderstood the linear representation of time in the pictorial drawing (Ong 1995).
Kreuter et al (2002 p1) suggest using "cultural values to provide meaning and context to health information". Denis (1998) found posters and videos improved adherence to antimalarials in Cambodia. For children, Mieke et al (2005) used a fairy tale called 'The Devimon Virus' to explain the immune system, HIV virus and the importance of treatment. While pictograms on drug packets were especially helpful for illiterate patients in Cambodia (Chareonkul et al 2002).
Recent emphasis has been on treatment preparedness and literacy (ICW 2005) Similarly, Coetzee et al (2004) found adherence to ARVs supported by a patient-centred preparation programme in South Africa. It should be ensured, however, that such a programme is culturally appropriate to Cambodia before the research is applied.
Frye (1995) recommends using cultural knowledge, imagery, values and themes to communicate health messages. Using examples and characters from Khmer folklore, for example 'Apsara' as a "cultural bridge" (ibid p279).
An individual's culture must be understood not assumed, and Kreuter et al (2002) describe targeted and tailored approaches emphasising the importance of time orientation as discussed above. Culturally appropriate treatment interventions are important to enhance care and therapeutic adherence (Schilder et al 2001.) Findings were supported by Kemppainen et al's (2000) study of culturally diverse patients. However, despite the evidence for supported treatment provision, there are still failures to develop treatment preparedness and adherence at a local level (Brook and Baker 2005).
The assignment has explored paediatric ARV treatment provision in resource poor contexts, and has highlighted the difficulties of caregiver adherence and the challenges of cultural values and beliefs relating to health, illness and treatment. Particular emphasis on cultural conceptions of time was used as a frame to critically evaluate the case study intervention observed in Cambodia.
Alternative treatment interventions and methods of communicating messages were explored. Research referring to Asian and Khmer cultures has been drawn upon. Some of which pertains to Khmer refugees, and thus the limitations of translating research on Khmers in different contexts is appreciated. There is a need for further research on Khmer populations within Cambodia, especially in relation to medication beliefs, health seeking behaviour and factors influencing adherence.
"Western medical practices do not always meet the cultural expectations of the people" (Sachs and Tomson 1992 p308). Interventions must be in a framework reflective of the need and priorities of the group (Mills et al 2005). Care that is not sensitive to culture can jeopardise trust, and impair future chances of successful adherence to treatment. We should therefore be aware of the differences between what we, as healthcare professionals, believe we provide and how that provision is experienced in diverse cultures. This is essential if we are to achieve effective care, sustained adherence and culturally appropriate implementation of paediatric ARV treatment.
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Cambodian Cultural and Historical Context.
The Southeast Asian country of Cambodia suffered decades of civil war at the hands of the Khmer Rouge from the 1970's until peace was restored in the late 90's. Almost a third of the population were killed as a result of the genocide, targeted at the intellectuals and professionals. The resulting shortage in the educated members of society, teachers, trained doctors and medical staff contributed to the total destruction of the health system (Yanagisawa et al 2004) and widespread illiteracy. By the end of the war there were only about 40 doctors in the whole country.
The civil war broke trust and solidarity among individuals and communities, whereby people were unable to trust even their own neighbours and family. Social cohesion, trust and security take time to rebuild. An agrarian culture most of the Khmer population live in rural communities. A lack of investment in transport infrastructure, means many of these rural communities are isolated. Tuberculosis is rife, probably as a result of the overcrowded conditions, poor sanitation and nutrition people experienced in the widespread displacement that occurred under the Khmer Rouge.
The rate of HIV infection is rising more quickly in Cambodia compared to the rest of Asia (Guertsen 2005), and estimates are that 3.5% of the population are infected. (KHANA 2000) Estimates of the number of children infected are 170,000. However, this is likely to be an under representation considering 50% of the population are children under 18 years (KHANA 2000).
Cambodians generally refer to traditional health practices when first unwell (Shimada et al 1995), followed by consulting a 'Kru Khmer' or traditional healer. In the towns, medication is available in the market and stores but is unregulated and often counterfeit (Bith 2004), which exacerbates the general mistrust the Khmer's have for western medication (Horne et al 2004). Corruption is endemic in Cambodia and serves as a barrier to the effectiveness and equity of healthcare provision.
Buddhism also influences how Khmer's respond to health and illness through emphasising acceptance of one's fate (Guertsen 2005.) Disability is stigmatised as it is believed to result from bad karma in a previous life.