The Perfidy of Stigma Experienced by the Palliative CHBC of Kanye in Botswana

INTRODUCTION

Palliative caregivers refer to family caregivers who stay with CHBC clients (HIV/AIDS and other chronically ill persons) to offer palliative care.

Palliative care is the care that is carried out, not to heal, but to relieve pain, distress, psychological loss, feeling of worthlessness and anxiety and which, gives hope, dignity, esteem, happiness, and inculcate the feelings that all will be well to a sick person.

Perfidy is a negative and undesirable state of affairs.

Increased HIV/AIDS statistics in Botswana and their association with the state of stigma prompted the researcher to go to the ground to assess and explore the situation dynamics with the hope of recommending robust interventions to contain the situation. The researcher, working as an HIV/AIDS advisor in the area of research for five years (2001-2005), was concerned with unofficial community complaints on the ground that CHBC clients were not adequately handled due to stigma amid other challenges. It was therefore necessary for him to institute research to authenticate these subjective claims whose empirical results could help chart the way forward to address the quagmire.

Botswana is one of the countries hardest hit by the epidemic. It ranks second in the world’s HIV/AIDS prevalence global ranking. While results from the Botswana AIDS Impact Survey II[1] indicate a national HIV prevalence of 17.1% with Chobe (29.4%), Francistown (24.6%), Selibe Phikwe (23.3%) leading other districts.[23] Botswana AIDS Impact Survey iii (BAIS III), conducted in 2008, shows an increase to 17.6%.[4] The presence of AIDS has had devastating national effects to the economy. It has caused Botswana to slip 51 places down the Human Development Index (HDI) rankings from an impressive 71 in 1996 to 122 in 1999/2000, putting the four decades of successful human and economic development pace in reverse gear. While the country of Botswana grapples to put interventions in place to address the effects of HIV/AIDS, stigma and discrimination have continued to pose as threat and major stumbling block.[56]

According to Festus Mogae, former President of the country of Botswana, stigma and discrimination surrounding the HIV/AIDS disease remains one of the greatest barriers to the implementation of various care and prevention strategies.[7] Kalanke[8] indicates that people living with HIV/AIDS (PLWHAs), because of fear associated with stigma and discrimination of HIV/AIDS, resort to using and adopting alternative coping strategies such as avoidance, denial and secrecy. This has had serious repercussions of negatively affecting the rate of consumption of services meant to help and cushion the effect of the virus to those who are affected. This has seen programs like prevention of mother to child transmission (PMTCT) suffering overtime, with eligible beneficiaries refusing to test in time and in sufficient numbers, preferring to keep their status secret for fear of discrimination, stigmatization and even physical abuse.[9]

MATERIALS AND METHODS

RESULTS

DISCUSSION

Atta and Fidzani[13] indicate that over 50% of caregivers in most of the Botswana CHBC program are old and poor women who may not be able to follow the hygiene protocol in the care process. It would seem that care giving responsibilities in Botswana like many other developing countries fall in the hands of the very elderly while the young and the knowledgeable have shunned caring duties due to stigma among other factors.[1415] The government and care managers need to increase community education and advocacy to attract the younger and the educated to share in the caring duties. Knowledgeable people are also in a position to understand the disease well and help to reduce and demystify the state of stigma.

The Kanye study indicates predominance of women over men. According to feminists such as Kelesetse, this presents societal exploitation to women and immensely contributes to feminization of poverty.[1617] The government, civil society bodies and HIV/AIDs campaigners need to increase education and advocacy on engendering the caring roles in all segments of the society.[17] Kanye study respondents were of low educational status. A similar research undertaking by Phorano, Nthomang and Ngwenya[18] in Maun and Kweneng found similar results, with 33% of the caregivers studied having lower primary education.

The phenomenon of palliative caregivers and their HIV/AIDS clients being discriminated by the service providers is not uncommon in many care settings, Botswana not withstanding. While treatment in Kanye referral hospital sent waves of dissatisfaction among the palliative caregivers, UNAIDS[19] confirms reports revealing individuals living with HIV/AIDS being discriminated against by the health care system, with withheld treatment being one of the common aspect. UNAIDS[20] also quotes some medical doctors in Bangalore in India who openly stigmatized HIV positive persons by labeling them as individuals with “bad habits” of visiting prostitutes, of smoking and drinking and for being promiscuous. In the 2005/2006 study by this author, some caregivers felt discriminated when some caregivers were given some incontinent sheets by the clinic nurses, while others were denied.[21]

The presence of stigma and discrimination leads to denial. Denial is a psychological and a coping defense mechanism that makes the patient and the palliative caregiver fail to recognize and acknowledge the reality of the situation.[22] In a study by Khan and Stegling[23] in Kweneng, all the HIV/AIDS clients they interviewed denied being HIV positive and thus shunned the government welfare assistance packages such as food basket. This was a big drawback to care giving as most of the PLWHAs in the country are needy and necessitating help from the well-wishers and other help systems.[24] A report from Maokane village (part of the Southern District) indicated that due to stigma, clients were shunning the vegetables they were given by communities to improve their nutritional status.[25]

Kanye research respondents indicated that the state of stigma was dwindling fast, and changing from being open stigma to being latent one. In Nyorosi East ward of Kanye village (study area), for instance, stigma had taken a dramatic dimension with stigma being only subjected to those who failed to take good care of their clients.[19] BONEPWA’s study[26] on stigma in Tsabong reinforced the above observation that the state of stigma was dwindling fast, and had changed state from open to latent.

Stigma has been disastrous to the consumption of government assistance services. According to Mukamaambo and colleagues,[27] community home based care program has not well met its objectives because patients and their caregivers hate to be associated with it openly. But Kalanke[8] blames the health administration and government in general for increasing stigma by making a fertile environment for stigma by serving the PLWHAs and their caregivers separately from the other clients in the health facilities. According to Kalanke’s study participants, this was tantamount to making communities see PLWHAs as different from them, and therefore be made to delineate themselves from any person living with HIV/AIDS. This however reinforced stigma and discrimination.

This author believes that if efforts could be made by all, especially the health personnel to show everybody that HIV/AIDS is a normal disease, with no any difference from other diseases, this could be one of the turning points to kill and demystify stigma.

Stigma also reinforces neglect of both the clients and the caregivers. In Kang‘ethe’s 2004 study in Kanye, some evidence indicated that that some clients were left and abandoned the whole day hungry and despondent.[28] Other studies done in Kweneng in Botswana on care giving by Khan and Stegling,[23] found that caregivers felt unsupported by their families, relatives and community at large, while findings in Zimbabwe on care giving suggest that care programs are not supported by their communities, stigma being one of the reasons.

Stigma was also found to make caregivers and their clients look for the services of the traditional healers. This is because the services of the traditional healers have not been associated with stigma like those of modern health institutions. This made possibilities that people living with HIV/AIDS combined the two medication systems which may be harmful to the working of the ARV and therefore undermine one’s immunity system.[29] With the magnitude of HIV/AIDS in Botswana coupled with an environment of inadequate human resource to face the epidemic, the role of traditional healers need to be revisited, strengthened through training, mutual consultation and collaboration, with a possibility of integrating their services into the modern health system.[29–31]

The presence of stigma has especially affected the youth who have refused to help their grandparents and their mothers who volunteer to care. Available literature indicates that due to stigma of carrying the red plastic bags in Kanye, with the youth refusing to help their elderly grandmothers who care, it is not uncommon for some bags to be thrown into the nearby bush where animals such as dogs could open the content, the act posing pollution and environmental degradation.[3233] This also poses challenges to the environmental campaign of a litter free generation.[3234] According to Botswana Millennium Development Goals, Botswana will by 2016 have adequate environmental education and awareness necessary to reduce the level of environmental contamination and achieve sustainable development.[735] Mokgwaru,[36] in his research on health hazards associated with unskillful collection and disposal of clinical waste found that it’s a source of both environmental damage and pollution and can predispose the community to the epidemic.

CONCLUSIONS

Stigma has been found to negatively affect the care giving quality and effectiveness. The environment, providing a fertile ground for stigma and discrimination to proliferate needs to be obliterated. Government, NGOs and all civil society organs need to work hand in hand to strengthen anti-stigma campaign across the width and breadth of the country. Involvement of persons living with the virus in the campaign frontline would be pivotal and critical, and their involvement is likely to pay great dividends in the campaign.