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Research ARVs Research Report 2006

The Sociological and Religious Experiences of People on Antiretroviral Treatment: Concern for Human Dignity, Problems of Access and Affordability, Programmes of Counselling, Supervision and Care

Introduction: This research project on people on Antiretroviral Treatment (ARVt) has now been completed. As the sample will show, 800 people on ARVt have been interviewed across the province of KwaZulu- Natal (KZN). This research report shows the duration of the project. The project started on the 5th of December 2005 and ended on the 26th March 2006. A provincial conference where the research will be presented by people on ARVt is planned for the 31st March 2006. The conference shall be held at the Diakonia Council of Churches. The presentation shall be made to the ecumenical movement especially the KwaZulu-Natal Church Leaders Group (KZNCLG) whom are expected to take the findings forward to the ministry of health in particular and all relevant and related institutions such as churches themselves.

This report spells out the hypothesis, the aims and objectives, the research methodologies and the process of questionnaire construction. The report constitute the composition of researchers, the sample, delimitations and the interpretation of findings including some recommendations for churches, ecumenical agencies as well as the health sector. As the topic suggests, this has been a social and religious research exercise. Though we had to work with people who are asking medical questions, this research does not begin to claim nor were it ever aimed to provide health science suggestions but social and religious ones.

  1. Duration of the Project: This project was designed to be a four months exercise, commencing as soon as a high level of consensus is achieved from the participating ecumenical organisations through their Directors and the KZNCC Executive Committee and the Churches Provincial Advocacy Office (CPAO) Advisory Board. The desired high level of consensus could not be achieved in a short spell of time remaining for the implementation of the project. The CPAO Advisory Board allowed the project to proceed under the prevailing circumstances. The project was begun from the 5th December 2005 and ended on the 26th March 2006.
  1. The Statement of the Problem: The regional ecumenical agencies and the Ujamaa Centre examined the ‘real life’ problem and concern from people on Antiretrovirals (ARVs). This,

according to the ‘animation’ approach, was appropriate for the people on ARVs themselves to tell us what to investigate, if we were to do a research concerning their lives. The ‘animation’

approach meant that the field workers would themselves, as agents of change, be immersed in the life and experiences of people on ARVs. This could best be done by people on ARVs themselves though there were a few other committed field workers who were doing field work as well. The people on ARVs examined what peculiar problem they will wish to unearth and together with them formulate recommendations which shall emerge from this exercise, for the purpose of lobbying the health ministry. The people on ARVs worked out the hypothesis of the research project which was tested in their various support groups across the province of KwaZulu-Natal.

The statement of the problem came out to be a concern for the social and spiritual struggles people on ARVs are engaged in, and which medical science does not seem to consider as part of the equation in search of ARV treatment (ARVt). The problem was discovered, could be in their own personal perceptions and experiences, their relation with family members, places of worship and the health sector.

may have to be influenced and shaped by the input from the very people on ARVs. The South African Catholic Bishops Conference (SACBC)1 is one body that has done this exercise already, though concentrating on the aspect of psychological effects. The aspects the KwaZulu-Natal Christian Council (KZNCC) attempt to pursue are, the sociological and the religious (theological), which shall deliberately be informed by the very people on ARVs.

The purpose of this choice stems from the ecumenical commitment to play a supportive and pastoral role in terms of serving the interests of and being in solidarity with – the poor on ARVs. The SACBC article2 by Sr Alison Munro, OP (2005: 4) reports on the spiritual and psychological support, she says: “… ongoing pastoral counselling, not only in adherence-related issues, is part of the programme, within the home-based care set-up or within the context of ARV-related services . faith commitment and walking the extra mile are key values not always found elsewhere. Church sites often do not have the same kinds of infrastructure one may find elsewhere, but the dedication to health care, often fuelled by a faith commitment, seems to underlie successful programmes”. The KZNCC’s hypothesis seeks to search on the social and religious effects on the human dignity of people who are on ARVs.

  1. Aims and Objectives:
  • To interact with people on ARVs, to unearth the social and religious questions they are struggling with, for the purpose of entering their world and together seek ways of sailing through in hope.
  • To discover from people on ARVs their experiences of caring and the denting of human dignity, from the health sector, church and society, for the reason of informing church leaders for the betterment of the situation by lobbying and advocacy.
    • To draft a research document for presentation to the provincial ministry of health and affected ARV roll-out health centres for consideration and implementation with the advocacy office monitoring through the Provincial Ecumenical Advocacy Forum (PEAF) and by so doing strengthen the voices of the poor around this concern.
  1. Research Methods
  • Narrative Research: People on ARVs were asked to tell their stories on personal experiences before and after taking ARVs; to tell how family and social interactions have changed; to tell how the religious sector has handled their situation and how the health sector is doing. The essays have been included in this report. A short analysis of the essays was done and recommendations made.
    • Ethnomethodology: Ethnomethodology is fieldwork research method. Fieldwork is about investigating situations and relationships that constitute people’s daily lives (Sanders 1999: 47). Field work is also called naturalistic research – research that takes place within the natural setting of the social actor (Mouton 1998: 1). Ethnomethodology forces the researcher to enter the world of the people investigated. It involves the people researched in asking their own questions and structuring their own answers. In this way the answers are not manipulated by the prepared questions. The environment in which research is done is as natural as possible and is not threatening to the interlocutors. For the purpose of our research and doing justice to the ‘animation[3] approach’ the research data collectors, the research team and the final interpretation of the research narrative has included people on ARVs.

Title: The Catholic Church and the provision of antiretroviral treatment. Sr. Alison Munro, OP. 4. The ‘animation approach’ referred to here is the one developed or coined by the Church Land Programme (CLP).1. The aims and objectives in this letter of consent have been directly derived from section 4. (4.1. – 4.3.) of the research design.

Though it is inevitable that the researcher has certain themes, and even questions, in mind, though these may not be written down, the interlocutors are given the freedom to determine what types of themes and questions would be of interest and importance to the research conducted. This is one advantage of ethnomethodology; i.e. that the agenda of the research is limited and is subjected to the felt questions of the interlocutors. The aim of the research is negotiated with the interlocutors.

According to Agnew and Pyke ethnomethodology is a ‘go-and-see’ method – the ‘eye ball’ technique, which is the core of field work method. “The essence of this science is the observation, description and interpretation of events a they occur in nature or naturally . This method requires no manipulation, no controlled experimentation, but, rather, the careful observation of episodes as they take place in their usual surrounding” (1982: 45).

  • Unstructured Interviews: “The researchers who make use of unstructured interviews are [.] concerned with understanding (verstehen) rather than explanation; with naturalistic observation rather than controlled measurement and with the subjective exploration of reality from the perspective of an insider [who are people on ARVs, their experiences with society, church and health providers, caring, and socio-religious meaning of being on treatment], as opposed to the outsider perspective that is predominant in the qualitative approach” (Shrurink 1988: 137 additions mine).
    • Participant Observation: For this part this research has drawn from the method proposed by Agnew and Pyke (1982). They suggest that participant observers are researchers who are directly involved in the socio-cultural life and activities of the group or community within which investigation is undertaken. Whilst social activities are happening, and researchers take part, the researchers gain first-hand experience of participating. Simultaneously, the researchers strive in their observation to be as objective as possible. In other words the researchers try not to make value judgements like ‘good’ or ‘bad’. ‘wrong’ or ‘right’, ‘beautiful’ or ‘ugly’. The researchers prevent their own biases, opinions, values, and beliefs from colouring their observation (1982:

49).

Agnew and Pyke warn that the possible distortions a researcher may cause are brought by his [her] past experience. The mood of the time when the observation is done also adds to the possible distortion of the observation. Human fallibility makes the possibilities for distortion even greater. Researchers must be conscious of any misleading opinions, beliefs or attitudes they harbour (1982: 48).

“The ethnographer participates, overtly, in people’s daily lives for an extended period of time, watching what happens, listening to what is said, asking questions; in fact collecting whatever data are available to throw light on the issue with which he or she is concerned” (Hammersley and Atkinson 1983: 2). For the purpose of this research and the time allocated to it, the participation and observation of an outsider, a person who is not on ARVs may be too short and laden with possible distortions. The insiders, people on ARVs are natural participant observers and have been deliberately preferred to provide the data of this research report over the four months period.

Ethnomethodology happens most naturally when the investigators live with the people. Time has been made in this investigation to make sure that the ethnography is done accordingly. We tried to make findings factual and valid. In order to minimize the problems of reactivity and suspicion, we were complete participants. “A complete participant gets access to the inside information and experiences the world in ways that may be quite close to the ways other participants experience it. In the way greater access to participant perspectives may be achieved” (Hammersley and Atkkinson (1983: 97 – 98).

The method of participant observation as proposed by Hinsley (1983: 56) and Hammersley and Atkinson (1983: 97 – 98) is also supported by Lewis (1976: 24 – 26). According to Lewis the participant observers must immerse themselves in the community, and must know their language. In the case of this research, except for one who was nevertheless fluent and acquainted with the Zulu language and traditions, all the participant observers were insiders through and through in terms of the language and the experiences of being people on ARV treatment. Lewis advises that researchers must follow what is going on around them, and must record with accuracy and subtlety. The recording must not disturb the flow and volunteering of information from willing interlocutors. In the words of Lewis, ethnographers must ‘mix’ with the local people; become the ‘life and soul of the party’ and seize the essence of the life around them. Ethnographers must identify with the community; must go to places, homes and functions; which our researchers were natural participants and insiders in all the ways (1976: 25 – 26).

  • The Use of a Structured Questionnaire: People on ARVs produced the structured questionnaire that was used. They also constructed the Zulu version of the questionnaire. After many meetings and long open discussions, people on ARVs agreed that the proposed structured questions must be taken to the fields to collect data from their own support groups and from other people of ARVt who are not in support groups. The same questions they agreed may be posed to the family members and close acquaintances to access how in turn they have socially and spiritually experienced people on ARVs before and after the decision to be on ARVs including what their fears and hopes were and whether they would encourage someone to make such a decision – to be on ARVs. In retrospect, the questionnaire was only focussing on people on ARVt.
  • Process of Acquisition, Construction and Selection of Questions for Reporting Purposes

The provincial coordinator in the person of the Churches’ Provincial Advocacy Officer (CPAO), went to run regional workshops on collection and collation of questions each region was dealing with regarding people on ARVs. The ecumenical organisations’ regions covered were Tugela Mzinyathe Christian Council (TMCC), KwaZulu Regional Christian Council (KRCC), Practical Ministries (PM) in the South Coast and the Piertermaritzburg Midlands area assisted by the Ujamaa Centre. The Sinomlando Oral History Project assisted with the facilitation of the collection and collation, and categorisation of the questions as well as on how to do research using the Oral History Research Methodology.

Subsequently, a provincial workshop which included all the regions mentioned above was called for the purpose of further refining of the questions together, as the province. When a questionnaire was drawn, bearing in mind that people of ARVs were continually and consistently involved in the whole process; people on ARVs were called in to scrutinize the questionnaire. We were asking questions such as: Do we have to go to the field with these questions? Is it culturally acceptable to ask such questions? How would we react if we were asked the same questions? Do the questions serve the aims and objectives of the research design? Are the questions unambiguous and appropriate and so on. Each question which remained in the questionnaire that ultimately went to the field had to pass the test of such scrutiny.

When the questionnaires returned and data capturing proceeded, it became clear that still some questions which were scrutinised as they were, do not serve the immediate purpose of the purported research design for reporting purposes. People on ARVs agreed that such responses must be kept in the CPAO files and would be accessed when required. These were questions like: Question 2. 10 which asked – “Have you ever attempted to infect other people?” All the questions were revisited, and for the purpose of this report the content questions which began in section two to five (section one contained administrative questions) which ultimately passed the second test of the report writing stage were Questions 2.3 and 2.4; 3.3 and 3.6; 4.5 and 4.7; 5.5 and 5.7 herein reported and interpreted (see appendix 1 – the full questionnaire).

  1. Composition of Regional Data Collectors Including Coordinators and Consultants

20 people in all were doing data collection across the province = 100%

Male = 9 = 45%

Female = 11 = 55%

Graph 1: Male and Female Data Collection Team

y 55 % A
^45% /

 

4 months

□ Males 45%
□ Females 55%

 

  1. Sample: Our total population size is 800 people interviewed across the province. The interviewees (interlocutors/ participants) were selected at random. As the graphs below would show (graph 2 in this instance, 39% of people on ARVs interviewed were male and 61% were female. The largest number of interlocutors (60%) is from Midlands’s area, 12% from the Durban and surroundings, 2% from South Coast, 18% from Tugela Mzinyathi and 8% from KwaZulu region. Accordingly, data capturing observed the law of proportional representation. Though it has to be noticed that the report is provincially and not regionally interpreted. This is because this project was designed to be provincial.
  2. Delimitation
  • Geographical: The research was confined to the province of KwaZulu-Natal and around those places where there is an ecumenical agency participating in the Provincial Ecumenical Advocacy Forum (PEAF).

8.2.  Focus: This research focussed on people on ARVs only, youth and adult.

  • Targets: This research targeted people on ARVs who were in support groups and not excluding those who are not for they were found randomly and were willing to participate in answering questions.
  1. The Executive Summary: The general trend of perceptions and experiences of people on ARVt which come out of the observations, the interpretation and the recommendations made in this research show that first and foremost the church (places of worship) are seen a potential spaces where people on ARVt can rely on and get faith and hope in God. Second to the church is the family. This research reveals that family bonds and relationships with people on ARVt become warm and strong. Families are supportive and people on ARVt appreciate it. Not all is doom and gloom with the health sector. Some regions and health service centre must improve their social and religious relationships with people on ARVt.
  2. Interpretative Discussion of the Report: With the facilitation of the CPAO, the Midlands Coordinator and the regional support group leaders who are people on ARVt themselves help with

 

process of interpretation and constructing recommendations. People on ARVt and their support groups did the interpretation.

Graph 2: Q 1.1 Male and Female Interviewees

□ 1

□ 2

 

Interpretation of graph 2.:

  • There were 61% females compared to 39% males interviewed.
  • It is observed there are more females in support groups than males.
    • It seems females are more willing to be organised and get them educated on ARVs than the male counterparts.
  • Probably more females are willing to be responsible with healthy living than males.

Recommendations: That both church and government consider giving serious attention to male persons. Concentrate on organising men of ARVt and still do not neglect the needs of females and children regarding access to affordable and appropriate ARVt.

Graph 3: Q 2.3 Before ARVt has you experienced an increase in your faith in God?

  • Never
  • Rerely
  • Sometimes
  • Frequently
  • Always

Graph 4: Q 2.5 After starting ARVt have you experienced any decrease in your faith in God?

 

Interpretation of graph 3 and 4: Question 2.3 and 2.5 were in the same category of personal perceptions and experiences with special focus on the religious aspects:

  • 7% people on ARVs had an increase in faith in God
  • The growth in faith in God after ARVs were provided came to 48% which is a 21.3% increase. Provision of ARVs increase faith in God.
  • Those who answered that they had frequent faith in God increase from 5.5% to 13.4% which is a 7.5 increase.
  • Though those who answered ‘sometimes’ they had faith in God before ARVt increased from 8.8% to 13.2% (i.e. 4.4%); those who said they never experienced faith in God were reduced from 41.2% to 20.8% which means almost 20.4% began to have faith in God.
  • Before ARVt 19.7% had faith in God always. After ARVt was proved 48% say they have faith in God always – an increase of 38.3%.

Recommendation: The support groups have become an alternative church. Shall the church therefore extend to provide their services of counselling, Bible studied, liturgies and socio- spiritual; support to the organised support groups. Shall the church encourage those who are not yet in support groups to begin to belong to an alternative source of faith and hope.

Graph 5: Q 3.3 Do they follow your treatment and give you support when needed?

 

 

 

 

 

 

  • Never
  • Rerely
  • Sometimes
  • Frequently
  • Always


 

 

 

 

Graph 6: Q 3.6 Have you ever felt as if anyone in your house does not want to get involved?

  • Never
  • Rerely
  • Sometimes
  • Frequently
    • Always

Interpretation of graph 5 and 6: Question 3.3 and 3.6 were in the same category on perceptions and experiences of people on ARVt concerning household members with special focus on the social relations aspects:

  • Members of households give a lot of support (44.6%, graph 5) but 9% always do not want to get involved (graph 6).
  • The majority of the family want to get involved (55%,graph 6) while it is noted that 19.8% do not give support (graph 5) a difference of 35% in favour of those who are supportive.
  • On both graphs an equal 7% on average both frequently give support as well as dissociate themselves

Recommendation: The families through the churches and the health sector should be applauded and given the support for the good work they are doing to their loved ones. Health care training and resources should be directed to the families. The families are the most to absorb and alleviate the burden of caring and loving to people on ARVs in this instance, but not exclusively. Attention should be given to the empowerment and equipment of families for the absorption and relief of the social, political and economic consequences of not attending to matters of people living on ARVs not exclusively.

Graph 7: Q 4.5 Do you feel discriminated in your place of worship?

6.20%
3.60%
16.80%, ,

□  Never

□  Rerely

Sometimes

□  Frequently

10.98%1                                                 62.42% ■ Always

 

Graph 8: Q 4.7 Does place of worship help you have faith on ARVt?

  • Never
  • Rerely
  • Sometimes
  • Frequently
  • Always

Interpretation of graph 7 and 8: Question 4.5 and 4.7 in the category of perceptions and experiences of people on ARVt at places of worship with special focus on both the social aspect (discrimination) and the religious aspect (faith in ARVt):

  • In regard to discrimination and encouragement to adhere to ARVt on both graphs, the response has been that 62.42% (graph 7) say they do not experience discrimination in their places of worship. It is observed that it could be that the churches (places of worship) have taken a positive turn in favour of accommodating and caring for people on ARVs, not exclusively.
  • The churches (places of worship) are encouraging people to be on ARVt = 30.5% compared to 7% (graph 8) who say their places of worship rarely encourage them to be on ARVt (a difference of 23.5% in favour of encouraging treatment).
    • It is interesting to observe 29% of people, say the places of worship never help them have faith in ARVt (almost equal to those who say places of worship do = 30.5% – a difference of 1.5% in favour.
  • Then for those who say ‘sometimes’ places of worship help them resort to ARVt score 22.5% and when interpreted to favour the positive response, places of worship score 22.5% + 30.5% = 53%

Recommendation: The churches are encourage all the more not to turn back to the negative attitudes and discrimination and stigmatisation of people on ARVs (not exclusively) but continue to open its doors of loving, carking, support and understanding.

Graph 9: Q 5.5 Do you experience discrimination by the health care system?

People on ARVt, who were interpreting felt that question 5.5 graph 9, and 5.7 graph 10 must be treated separately.

  • Never
  • Rerely
  • Sometimes
  • Frequently
    • Always

Interpretation:

  • It was observed that the majority of the interlocutors (36.4%) on ARVt say they never experienced any discrimination by the health sector is good but not good enough. A concern was raised that this percentage has to be improved.
  • Still, that even the meagre 8% who say they frequently experience discrimination by the health sector is too high to be ignored.
  • That the 28.3% who say they always experience discrimination by the health sector raises a serious concern.

Recommendation: The research shows which health sectors, in which regions, have such a problem of discrimination against people on ARVt. The churches are asked to visit these centres health centres, to make their own observation, get in touch with support groups and individuals who have suffered discrimination and act appropriately. The churches are encouraged to meet with the individuals and support groups which say ‘sometimes’ do experience discrimination.

Graph 10: Q 5.7 Do you get required help from hospitals, when needed?

The discussion and interpretation group felt and agreed that concern should be shown to those who have had problems in accessing help and service in the health sector. That is, concentrate on those who responded that they ‘never’ and ‘sometimes’ get the required help from the heath sector.

 

1240% □ Sometimes
23.40%
□  Never

□  Rerely

□  Frequently

□  Always

 

 

 

 

 

 

 

Interpretation:

 

–          People on ARVt who say they never get the required help from hospitals scores 18.7% – this is almost 1 out of 5 people do not get help whilst they are already of ARVt is an issue calling for attention.

  • That only 26.8% say they get the necessary help is too little and has to be improved, especially when people have been included in the treatment programme.

–          That it is not good that 23.4%, another 1 out of 5 people of ARVs say they sometimes get help has to be addressed.

Recommendation: In a practical manner, the churches shall be provided with information about the health sectors which never help people on ARVt, to do their own observations, draw conclusions and pave the way forward to address the situation with the ministry of health.

i □ Q- in e>i □ Q- eo eo □ Q- to eo ■ Q- in □ Q- 4.7 ■ Q- in iri □ Q- .7 iri ” src=”file:///C:/Users/Steve/AppData/Local/Temp/msohtmlclip1/01/clip_image037.png” vspace=”7″ hspace=”7″ v:shapes=”_x0000_s1058″>Graph 11: Comprehensive Bar Graph

-1
tr 1 n n. n r
mti\ 1 rlnJl

 

1: Never 2: Rarely 3: Sometimes 4: Frequently 5: Always

Observations: Q 4.5 answer 1 was on discrimination at places of worship which answered never scored the highest (above 60%). Followed by Q 3.6 which was on people in the household who do not want to be involved and the answer was never (About 55%). Followed by Q 2.3 which was on increase in faith in God (just above 40% increase)?

Interpretation:

  • The church is still one place of hope for people on ARVt.
  • Social relations in the household become stronger when one is on ARVt
  • Faith in God increases when one is on ARVt.

Recommendation: While the perceptions and experiences about the church faith and family are favourable according to people on ARVt, the church and family should maximise their effort in consolidating this social and religious relationship. The health sector should also endeavour to do the same by improving their situation according to the experiences and perceptions of the 800 people on ARVt who participated in this project.

Appendix 1

See Research Questionnaire Attached Appendix 2

Collections of the Stories of People on ARVt and Experiences of Field Researchers Appendix 3

Letter/ Document of Consent

Research on People on ARVs Treatment Letter of Informed Consent: Consent to Participate in Research on the Social and Spiritual Shifts and Experiences by People on ARV Treatment

Introductions: The KwaZulu Natal Christian Council (KZNCC) seeks to do a sociological and religious research on people on ARV treatment. The details, on aims and objectives, confidentiality, publication, and intended utilisation of the information and such related matters, and the request for consent of participants are spelled out in this letter/ document of consent.

Aims and Objectives4

4.1.  To interact with people on ARVs, to unearth the social and religious questions they are struggling with, for the purpose of entering their world and together seek ways of sailing through in hope.

4.2.  To discover from people on ARVs their experiences of caring and the denting of human dignity, from the health sector, church and society, for the reason of informing church leaders for the betterment of the situation by lobbying and advocacy.

4.3.  To draft a research document for presentation to the provincial ministry of health and affected ARV roll-out health centres for consideration and implementation with the advocacy office monitoring through the Provincial Ecumenical Advocacy Forum (PEAF) and by so doing strengthen the voices of the poor around this concern.

Protection to Right to Privacy and Confidentiality: The interlocutor is assured by KZNCC, the right to protection, privacy and confidentially regarding the information divulged.

Duration of Project: The project commences from the 5th of December 2005 to the 31st March 2006. Follow up processes and programmes shall be negotiated anew.

Procedures to be Subjected to: The participants shall be subjected to one-on-one interview, group interview, group interpretation and reflection, and adoption of the report at provincial conference 31st March 2006.

Benefits: According to the aims and objectives of this exercise, the advocacy office of KZNCC hopes a change of attitude from inhumane treatment to a humane treatment with human dignity, improvement of conditions from counselling programmes, supervision, affordability of treatment and access to facilities shall be affected. It is in the nature of social and religious processes of change, that much as some can be immediate and tangibly observables, in most cases they are gradual and sluggish and yet measurable.

Risks: A socio-religious research designed in this manner has a risk of miscalculation and misinterpretation of data.

Number of Participants: The maximum number of participants in this project is 1000 people covering the whole province of KwaZulu Natal.

Termination from Participation: The participants have a freedom of terminate from participation at any time during the research period and subsequent programmes emerging from these proceedings.

Publication and Use of Results: The research report ‘document’ shall be published at the envisaged conference. Quotations and other forms of acknowledgements shall be handled according to the agreements and approval of the participants observing privacy and confidentiality. The document shall be used as a lobbying and advocacy tool for the enhancement and betterment of the conditions of people on ARVs.

Appendix 4

CPAO ARV Research Data Collectors

Practical Ministries Mr. Lizo Ngubane

Mondli Ngema______

Ms. Ruth Biyela Mr. David Memela

Ujamaa__________

Mrs. Sanele Mgadi Mr. Musa Duma Mr. Andile Magubeni Ms. Cindi Dladla

Ms. Dudu__________

Molly Khubeka Mr. Evans

TMCC____________

Rev. Isaac Mgema Rev. Thami Dlamini Ms. Lindeni Tshabalala Mrs. Nomusa Ngubane Mr. Magubane

KRCC____________

Rev. Bekithemba

Buthelezi_____________

Rev. Sydney Mthethwa Mr. Lindeni Mavuso

YMCA_______

Mr. Thembinkosi

Ncgobo____________

Ms. Sethembile

Mseleku____________

Ms. Charity Mahlaba Ms. Thabile Ngubane Mrs. Vathiswa Magubeni

Consultant____

Mr. Paulo Mabote Mrs. Wendy Van Hollander

Recommendations Extracted from the Research Report ‘On People on Antiretroviral Treatment’, People Living with HIV/AIDS and the Provincial Poverty Exposure Trip

Introduction

The KwaZulu-Natal Christian Council (KZNCC) through the office of the ‘Churches Provincial Advocacy’ in service to various ecumenical organisations and the KwaZulu-Natal Church Leaders Group (KZNCLG) has done research on people on Antiretroviral treatment (ARVt) and organised a provincial poverty exposure expedition. Following are recommendations extracted from the research reports.

Recommendations from the People on ARVt Research

Recommendations 1: We, people living with HIV/AIDS and have succeeded to be on ARTV treatment recommend that both church and government consider giving serious attention to male persons. Concentrate on organising men on ARVt to come to support groups meetings or get organised themselves and still do not neglect the needs of females and children regarding access to affordable and appropriate ARVt.

Recommendation 2: The support groups have become an alternative church. Shall the church therefore extend to provide their services of counselling, Bible studies, liturgies and socio- spiritual; support to the organised support groups. Shall the church encourage those who are not yet in support groups to begin to belong to this alternative source of faith and hope.

Recommendation 3: The families through the churches and the health sector should be applauded and given the support for the good work they are doing to their loved ones. Health care training and resources should be directed to the families. The families are the most to absorb and alleviate the burden of caring and loving to people on ARVs in this instance, but not exclusively. Attention should be given to the empowerment and equipment of families for the absorption and relief of the social, political and economic consequences of not attending to matters of people living on ARVs not exclusively.

Recommendation 4: The churches are encourage all the more not to turn back to the negative attitudes, discrimination and stigmatisation of people on ARVs (not exclusively) but continue to open its doors of loving, caring, support and understanding. v

Recommendation 5: The research shows which health sectors, in which regions, have such a problem of discrimination against people on ARVt. The churches are asked to visit the health centres, to make their own observation, get in touch with support groups and individuals who have suffered discrimination and thereafter act appropriately. The churches are encouraged to

meet with the individuals and support groups which say ‘sometimes’ do experience discrimination.

Recommendation 6: In a practical manner, the churches shall be provided with information about the health sectors which ‘never’ help people on ARVt, to do their own observations, draw conclusions and pave the way forward to address the situation with the ministry of health.

Recommendation 7: While the perceptions and experiences about the church, faith and family are favourable according to people on ARVt, the church and family should maximise their effort in consolidating this social and religious relationship. The health sector should also endeavour to do the same by improving their situation according to the experiences and perceptions of the 800 people on ARVt who participated in this project.

Recommendations from the Research on People Living with HIV/AIDS

Recommendations 1: Churches need training to deconstruct judgemental attitudes in order to effectively address HIV/AIDS in their communities.

Recommendation 2: Information learned from training programmes needs to be shared with other members from church and the community.

Recommendation 3: Churches should redefine their roles to meet the real needs of their community.

Recommendation 4: Revise preaching methods to encourage discourse with congregations as well as the wider community.

Recommendation 5: Churches must have a uniform programme of spiritual support and care collectively designed to offer effective services across the province and denominations to those living with HIV/AIDS.

Recommendation 6: Encourage all members of the parish to actively engage in programme implementation and management.

Recommendation 7: Use church building to integrate members of the community into active ministry through social programmes and skills development workshops.

Recommendation 8: Provide prayer, pastoral care and counselling for people living with HIV/AIDS.

Recommendation 9: Address the issues of poverty and unemployment Recommendation 10: Share resources and increase networking capacity.

Recommendation 11: Address issues of gender inequalities in the church Recommendation 12: Visibly include people living with HIV/AIDS in the church programmes.

Preliminary Recommendations from the Provincial Poverty Expedition

Recommendation 1: We recommend that churches monitor the utilization of R6.2m provided to the Inanda, KwaMashu and Ntuzuma (INK) areas to cooperatives addressing poverty alleviation through garden projects. Visit the sites, demand to see accounting of finances and profits, assess if the initiative does address the problem and lobby the municipalities on what should actually happen based on the observation of the situation.

Recommendation 2: Talk to AFRA (Association for Rural Advancement) and related organisations to provide water for the Pomeroy community.

Recommendation 3: Address the problems of access to documentation such as identity documents, birth certificates etc to assist communities access government grants

Recommendation 4: Get involved in resolving the problems faced by communities at pension pay points.

Recommendation 5: Help communities struggling with corruptions of political official involving the process and implementation of tendering of project.

[3]  Hypothesis: What are the social and religious effects on the human dignity and self-worth of people on antiretroviral treatment? Meanwhile, this assumption, that there is some social and religious effect, affecting and impacting on the human dignity and self-worth of people on ARVs