Research Report On HIV and AIDS And Plwha 2009

A FOLLOWUP RESEARCH ON EXPERIENCES OF PEOPLE LIVING WITH HIV AND AIDS (PLWHA) 15 March 2009

Executive Summary: The general findings of the research presented a positive picture. The interviewees it is revealed are happy in the manner in which they are personally living with HIV and a adhering to the ARVs. They paint a very positive picture about the change in attitude of the places of worship and fellow worshippers. They are elated by the way in which households and members of the households are supporting and journeying with them and the same positive feeling is expressed concerning the health institutions and practitioners who have created a caring atmosphere for PLWHA and people of ARVs.

The researchers decided to report openly by presenting the questionnaire and data coding, collection, capturing and interpretations as is. The interpretations presented the findings, the reason behind the findings and recommendations on what needs to be done.

Introduction

Institutions from government, business, donors, civil society and religious bodies have jointly and severally made their contribution on attending to the scourge of HIV and AIDS. Research institutions from such contributing organisations keep on giving us information on how humanity is doing in relation to HIV and AIDS. This research done by the KwaZulu-Natal Christian Council (KZNCC) seeks to make a contribution in giving one measurement on how individuals living with HIV, households, places of worship, health intuitions are doing in terms of the perception and experiences of dealing with the issues of HIV and AIDS.

A structured questionnaire was used to collect data. Researchers went to do field work at health care centres, support groups and house-to-house visitations randomly. In order for this research to measure the improvements or retrogressions done, the same type of target group like the one visited in 2006 was targeted. As a result in comparison with the 2006 results a measure of improvements or retrogressions was done. This research was done as a follow-up on the measurement of the impact and changes of the perceptions and experiences of people on antiretroviral treatment and people living with HIV and AIDS (PLWHA) in 2009

Problem Statement

How far has the experiences and perceptions of People Living with HIV and AIDS (PLWHA) and people on Anti-retroviral (ARV) treatment have changed since 2004 and 2006. In 2004 and 2006 the KwaZulu-Natal Christian Council (KZNCC) conducted a research on the attitude of the churches concerning people living with HIV and AIDS and another on people on ARVs. In 2009 a question of revisiting the research came about challenging KZNCC to go back to those very people and similar sample of people and find out how much change has happened since five years ago. The research which was undertaken in 2009 was based on the quest for finding out whether a difference and impact has been made.

Research Process and Methodology

Recruitment of Researchers

The first group of researchers was from among those who were involved in the 2006 project which was a team of 29 people who did the research in parts of the whole province of KwaZuluNatal (KZN) according to the demarcation of the ecumenical movement’s regions. The second line of recruitment was among members who worked for the organisations in which the first group of recruits were active leaders since 2006 to date – 2009. The third line of researchers was recruited from those who are associated with the original researchers who are in the field of the work of HIV and AIDS. The fourth and the last line of recruitment was done among those who are acquaintances with people living with HIV and AIDS and those knowledgeable and conversant with the sensitivities on dealing with research on the subject related to HIV and AIDS issues and complexities.

Review of 2006 Structured Questionnaire and Training on How to Handle a Questionnaire

As part of training on how to handle a questionnaire and how to conduct an interview session, the recruited researchers were subjected to the reviewing of the 2006 questionnaire. The reviewing of the 2006 questionnaire considered the new situation and context in which PLWHA and people of ARVs are living. In that consideration only 10 questions divided into 5 sections in which 2 questions each were considered was constructed. The questions were structured in the manner that they could provide verification and falsification of responses by asking the carefully selected opposite question immediately, so that contradictions may be avoided or explained voluntarily by the interviewee. This the researcher did by simply asking the questions again for the respondent to reconsider the clarification of the contradiction.

Qualitative Fieldwork Research

“Field work is a general descriptive term for collection of raw data. The term is mainly used in the natural and social sciences’ studies, such as anthropology … It is more technically known to scientific methodologists as field research. In public health the use of the term field work refers to epidemiology or the study of epidemics through the gathering of data about the epidemic …” (Wikipedia.org).

Though this research was not about the study of the epidemic/ pandemic of HIV and AIDS, but was about the description of the experiences and perceptions of PLWHA and people on ARVs through the use of a structured questionnaire and that researchers went out to the field to do one-on-one and group interviews qualifies this research to be categorised as qualitative field work research within the social science research discipline.

Data Capturing, Coding and Analysis

“In general, qualitative data coding entails identification of the themes contained in specific text passages or segments []. Themes may include beliefs, experiences, or opinions that the respondent was trying to communicate in response to the interviewer’s questions. Different respondents may express the similar themes but state their ideas in different ways, or they may hold entirely different ideas. The qualitative data coding process requires that coders accurately read and comprehend similarities and differences across various text passages, regardless of the way respondents express themselves. Text passages containing identical themes are coded the same way and passages containing different themes receive different codes” (Statistical and Surveillance – “CDC EZ-Text”)

The researchers were trained and with the assistance of a closed and structured questionnaire, were able to easily mark the responses and enter them in correct response boxes provided in the questionnaire. The sections of the questionnaire classified the responses into the personal, household, religious places and health institutions.

Raw Data Weighing and Interpreting the Extremes

The raw data scale in this research is arranged in ascending order/strength = 1 (weak) to 5 (strongest). The reposes entered under the block 1 earned one mark and those marked under 5 earned 5 marks/points each. The significance of weighing is to consider the feelings of the minority (those who feel differently). Say the majority respond that all is well and score 80% which is entered into the one point earning block, and the minority say it is not, scoring 20% which is entered into the 5 points earning block. If the multiplication of their box (5 for strong = 5 x 20% = 100%) is almost matching the weighing of the 80% it means the 20% have a case to be considered. Meaning a recommendation must be made to deal with the minority.

One more example – if 30 people are interviewed, and 25 entered into the block marked one (1) will earn just 25 marks. And the remaining 5 all entered into the block marked 5 will earn 25 marks, which means the case and concerns or responses of the minority must be equally considered to. Translating into saying a recommendation of further action must be done in consideration of the minority.

Researchers Male and Female Recruited: Ten (10) Females and Six (6) Males = 16 = 62. % female plus 38.8% male researchers.

Total Number of People Interviewed: 1099

Places where Interviews were Conducted

BB Imbali

Boom and East Street Clinic

Caluza Township

Catholic Church Support Group (Pietermaritzburg)

Central Hospital (Pietermaritzburg)

Durban Institute of Technology Campus (Imbali)

Edendale Hospital

Elandskop Village

France Township

Gezubuso Village

Imbalenhle Clinic

Kwapata Location

Lutheran Church Support Group

Mafakatini Village

Mpumuza Village

Northdale Hospital

Oribi Village

Riverside Campus

Siyaphila Support Group

Sondelani Clinic

Sweetwaters Support Group

Taylors Village

Willowfontein Location

Total Number of questionnaires Classified by Age Group: 1081

Eighteen (18) questionnaires which were excluded did not have the age group marked for cultural reasons. One more observation was that there was resistance from interviewees to reveal that they were on Antiretrovirals ARVs) or not.

Comprehensive Report

Practicable Key Recommendations

  1. Though the majority of the people interviewed feel that PLWHA and being on ARVs is not a punishment from God the 11% which feel it is so need attention as well. The message of the grace, the love and care of God must be presented with more vigor and urgency. Conduct Bible studies, theology of HIV, gender and care.
    1. Teach people about the importance of discloser so that they can be supported properly.
  2. Give attention to a remnant of nurses who still make stigmatising comments regarding PLWHA and people on ARVt. These nurses, some of them are not educated about this challenge. They comment negatively about PLHWA and on ARVt saying in public at a place of health service – why do you cough so much? Why do you always have a running tummy? What are you eating? These comments are suggestive. Pay attention to the nurses who have stigma. Pay attention to the promises of giving food parcels in vain. Patients need to be honest to nurses about their status. One must not say I have a headache without saying at a properly demarcated place I have this condition – either living with the virus or on treatment. Begin an investigation on the allegation that some health workers still people’s CD4 counts from files for ulterior motives. Organise an exposure visit by the church – pastors.
  3. More support groups must be initiated in places of worship. The pastors still need education and information on HIV
  4. KZNCC must extend this research to the whole province and compare regional findings, reasons and recommendations.
  5. KZNCC must conduct provincial workshops with this research methodology to empower regional emerging researchers
  6. Increase more awareness in churches by having a systematic programme of PLWHA and people on ARVt to address the churches on Sunday services.
  7. KZNCC must have along side with HIV education and exposure a programme of distributing food parcels especially to people of ARVt.
  8. Continue doing workshops to educate the religious sector on HIV and AIDS. Encourage churches to form support groups. Churches must be encouraged to visit people at home. Churches must be encouraged to give both spiritual and material support.
  9. This report must be made available to traditional leaders, political leaders, implicated government departments and churches to implement recommendations best suited for them.
  10. Individual fellow worshippers must be encouraged the more to give and make an added effort to support PLWHA and those on ARVt. The churches must run workshops on awareness of the myths and forms of denial some people are entangled in and try to dispel such myths.
  11. The churches who are working in the area of HIV and AIDS must seek to be in partnership with the health care institution and contribute their share of the fight against HIV and AIDS.
  12. Equal emphasis and effort must be given to attending to the elderly people when it comes to dealing with the issues of HIV and AIDS. Conduct family camps of HIV and AIDS including and involving the elderly as well.
  13. Run workshops for nurses to help them create a situation where people can easily disclose their status. The same workshops could be run for families and doctors.
  14. KZNCC commence with food production projects – fruit and vegetable gardens etc.

General Report Section 1 – 5 All Age Groups

SECTION 1: PERSONAL INFORMATION

ISIGABA 1: IMINININGWANE YAKHO

Q1.1. Are you on ARVt. Kungabe ukuma [ ]

or a PLWHA. Noma uphila negciwane kuphela? [ ]

Q1.2 Which age group do you fall in?

Ingabe iminyaka yakho iphakathi kuka?

1.2.1.: 14 – 25 1.2.2.: 25 – 35 1.2.3.: 35 – 40 1.2.4.: 40 – 45 1.2.5.: 45 – 50

Answer the questions scaled from 1 to 5. Mark with X, where applicable.

Scale codes: 1- Never, 2 – Rarely, 3 – Sometimes, 4 – Frequently and 5 – Always

Phendula lemibuzo elandelayo ngokufaka inombolo eyodwa phakathi kuka 1 kuya ku 5. Beka uphawu X maqondana nenombolo efanele.

  1. Akukaze, 2. Nje, 3. kuyenzeka, 4. Njalo, 5. Njalo njalo.

SECTION    2:   PERCEPTIONS   AND   EXPERIENCES   IN   RELATION   TO YOURSELF1

ISIGABA 2: IZIMVO NOSUKE WAHLANGABEZANA NAKHO

Interpretation on Perceptions and Experiences in Relation to the People Interviewed Themselves.

Q.2.1. Finding(s): The findings of this research generally after interviewing 1099 people discovered that 68% of them said being a PLWHA and being on ARVt is not a punishment from God. Only 11% of the people responded by saying that they always feel that being a PLWHA and being on ARVt is a punishment from God.

Reason(s): The 68% of people interviewed say it is written in the Bible that a time will come when diseases will increase. What is happening is the fulfillment of the scriptures. The 11% who responded that they feel like being punished by God reason that they are separated from God and that they are being punished because they have not fulfilled the Ten commandments.

Recommendation(s): Though the majority of the people interviewed feel that PLWHA and being on ARVt is not a punishment from God the 11% which feel it is so need attention as well. The message of the grace, the love and care of God must be presented with more vigor and urgency. Conduct Bible studies, theology of HIV, gender and care.

Q2.2. Finding(s): Only 39% of the people interviewed felt living with and being on ARVt is a blessing from God. They say people who go for HIV testing shows that they are very brave.

Reason(s): The reason they put forward is that HIV has brought them closer to God. They say that they now have the fear of God in them – meaning that they feel the awe and the presence of God.

1 Scale is ascending in strength = 1 (weak) to 5 (strongest)

2 The significance of weighing is to consider the feelings of the minority (those who feel differently). Say the majority respond that all is well and score 80% and the minority say it is not scoring 20%. If the multiplication of their box (5 for strong) is almost matching the weighing of the 80% it means the 20% have a case to be considered. Meaning a recommendations must be made to deal with the minority

Recommendation(s): Positive feelings and experiences must be encouraged all the time

SECTION 3: PERCEPTIONS AND EXPERIENCES IN RELATION TO MEMBERS OF YOUR HOUSEHOLD OR FAMILY

ISIGABA3: IZIMVO NOSUKE WAHLANGABEZANA NAKHO KULABO OHLALA NABO

1 2 3 4 5 Total
Q3.1. During taking treatment do members of 85 69 142 436 371 1099
your household give you support when needed?
Or do members of your household support you
as a PLWHA
Ingabe abomdeni bayakulandela ukwelashwa
kwakho bakunike usizo lapho kudingeka? Noma
abomdeni baya kusekela nje ngo PLWHA
Q3.2. Have you ever felt as if anyone in your 610 182 198 54 48 1099
household does not want to get involved? (For
both ARV person and PLWHA)
Kuyekwenzeke kube khona emndenini
abangathandi ukuzibandakanya nokwelashwa
kwakho? (Kubobonke abaku ARV / PLWHA
Weighing 3.1. 85 138 426 1744 1855
Weighing 3.2. 610 364 594 216 240
3.1. % 8 6 13 40 34 %
3.2. % 56 17 18 5 4 %

Interpretation on Perceptions and Experiences in Relation to the Members of the Household.

Q3.1. Finding(s): Household members are very supportive. They have learned about HIV. Disclosure is very high. They are supportive because they realise that “once goes around comes around” – meaning that they are conscious that they can be infected too as they are affected.

Reason(s): There is decrease of the belief that HIV is a curse. They are aware that all people are prone to be infected with HIV.

Recommendation(s): Encourage the households to be supportive as they do.

Q3.2. Finding(s): Those who are not supportive do not know much about HIV.

Reason(s): In some households which are not supportive it is so because households do not know what a person is suffering from to those who have not disclosed at home. Some households are given too much to drinking and therefore do not care. Some people who are infected stigmatise themselves. They discriminate themselves and do not want to socialise themselves.

Recommendation(s): Teach people about the importance of discloser so that they can be supported properly.

SECTION 4: PERCEPTIONS AND EXPERIENCES IN RELATION TO YOUR PLACE OF WORSHIP

ISIGABA 4: IZIMVO NOSUKE WAHLANGABEZANA NAKHO ENKOLWENI YAKHO

1 2 3 4 5 Total
Q4.1. Do you feel discriminated in a religious 682 129 205 49 42 1099
situation? (both ARV and PLWHA)
Uzizwa ubandlululwa yini endaweni
okukhulunywa ngezenkolo? (kubobonke – ARV/
PLWHA)
Q4.2. Do people in your place of worship 146 95 234 284 333 1099
encourage you to adhere to ARV? In a religious
situation do you feel encouraged to adhere to
ARV or live positively with virus?
Endaweni okukhulunywa kuyo ngezenkolo
uzizwa ukhuthazeka ukuthatha imishanguzo
ngendlela ARV? Noma endaweni okukhulunywa
ngezenkolo uzizwa ukhuthazeka ukuba
nemicabango emihle?
Weighing 4.1. 682 258 615 196 210
Weighing 4.2. 146 190 702 1136 1665
4.1. % 62 12 19 4 4 %
4.2. % 13 9 21 26 30 %

Interpretation on Perceptions and Experiences in Relation to the Places of Worship or Religious Settings

Q4.1. Finding(s): The response on whether people interviewed felt discriminated against in places of worship or where issues of religion are discussed, 62% said no they have not felt segregated nor isolated nor uncomfortable but 4% said yes they felt discriminated and uncomfortable.

Reason (s): The application of the scriptures has turned to be positive since pastors have been informed about HIV. But there is a remnant of pastors who have not been educated on HIV yet.

Recommendation(s): More support groups must be initiated in places of worship. The pastors still need education and information on HIV

Q4.2. Finding(s): On being encouraged to adhere on ARVs, 56% said yes who go to places of worship have been encouraged and supported. Some respondents said they don’t go to church and could not comment on the question. Some sane the situation at places of worship has drastically improved in that the challenge of HIV is spoken about. The churches have accepted that their members do get infected and affected including the pastors and ministers. The churches have come to terms with the fact that anyone can be infected and affected. In-fact all humanity is infected and affect potentially and actually.

Reason(s): Pastors also disclose that they personally are infected and affected with HIV. Sermons on HIV have become positive and supportive. Positive living foe all people is being preached.

Recommendation(s): The 4% which is still negative in terms of supporting PLWHA and people on ARVt negligible as it is need serious attention for them to get information and education on the subject

SECTION 5: PERCEPTIONS AND EXPERIENCES IN RELATION TO HEALTH CENTRES

ISIGABA: IZIMVO NOSUKE WAHLANGABEZANA NAZO EZIKHUNGWENI ZEZEMPILO

1 2 3 4 5 Total
Q5.1. Do you experience discrimination by the 690 105 199 42 29 1099
health care system? (to both ARV and PLWHA)
Ingabe uyahlangabezana nokubandlululwa
ezikhungweni zezempilo? (Kubobonke ARV/
PLWHA)
Q5.2. Do you get the required help by the health 73 103 189 339 353 1099
care system, when needed? (to both ARV and
PLWHA)
Ingabe uyaluthola usizo ezikhungweni zezempilo
ngesikhathi oludinga ngalo? (Kubobonke ARV/
PLWHA)
Weighing 5.1. 690 210 597 168 145
Weighing 5.2. 73 206 567 1356 1765
5.1. % 63 10 18 4 3 %
5.2. % 07 09 17 31 32 %

Interpretation on Perceptions and Experiences in Relation to the Health Care Centres

Q5.1. and Q5.2. Findings: Responding to whether PLWHA and people on ARVs experience discrimination when visiting health care centers, 63% said no they are not being discriminated against. There are special places for positive people in health care centers and anyone who is allowed for services there would have the challenge of dealing with issues relating to PLWHA and people on ARVs. The people affected, those living with the virus and those on treatment have their own designated doctors. Some of the nurses are infected as well. Society does give support as well.

Reason(s): The health sector is no longer in denial. The health sector disseminates information through pamphlets, leaflets and posters

Recommendation(s): Give attention to a remnant of nurses who still make stigmatising comments regarding PLWHA and people on ARVt. These nurses, some of them are not educated about this challenge. They comment negatively about PLHWA and on ARVs saying in public at a place of health service – why do you cough so much? Why do you always have a running tummy? What are you eating? These comments are suggestive. Pay attention to the nurses who have stigma. Pay attention to the promises of giving food parcels in vain. Patients need to be honest to nurses about their status. One must not say I have a headache without saying at a properly demarcated place I have this condition – either living with the virus or on treatment. Begin an investigation on the allegation that

some health workers still people’s CD4 counts from file for ulterior motives. Organise an exposure visit by the church – pastors.

General Recommendations

  • Government must do private investigation on the allegation that officials are stealing ARVs and distribute ARVs inequitably

■  Government must increase mobile test apparatus/ equipment

■  KZNCC must extend this research to the whole province and compare regional findings reasons and recommendations.

  • KZNCC must conduct provincial workshops with this research methodology to empower regional emerging researchers
  • Increase more awareness in churches by having a systematic programme of PLWHA and people on ARVs to address the churches on Sunday services.
  • KZNCC must have along side with HIV education and exposure a programme of distributing food parcels especially to people of ARVs.
    • MTCP (mother to child prevention) must be promoted through educating pregnant women

■  Patients must be taught to report the staff when they are mistreated,

Reflective Report by Age Groups

Rationale for Interpretation by Age Group: This research wanted to investigate how various age groups are responding and experiencing living with the virus as individual persons, at home, in places of worship, and health service institutions. It would have been unwise to stop at the interpretation of the finding from a general group which included everyone. The researcher felt is would be wise to see whether there could different experiences and perceptions related to each age group. The research has discovered that 43% of the people reached which is the largest group encountered are between the age of 25 – 35. Following is the presentation of the actual research reported on the questionnaire by age group.

Age Group 14 – 25

Number of People Interviewed: 246

SECTION 1: PERSONAL INFORMATION BY AGE GROUP

ISIGABA 1: IMINININGWANE NGEMINYAKA

1 2 3 4 5 Total
Q2.1. Have you ever felt that being on ARV/PLWHA 144 13 37 5 47 246
is a punishment from god.
Ucabanga ukuthi ukuba kuma ARV/PLWHA
kuyisijeziso esivela kuNkulunkulu.
Q2.2. Have you ever felt that being on ARV/PLWHA 128 34 39 16 23 246
is a blessing from God
Ucabanga ukuthi ukuba kuma ARV/PLWHA
kuyisibusiso esivela kuNkulunkulu.
Weighing 2.1. 144 26 111 20 235
Weighing 2.2. 128 68 117 64 115
2.1. % 59 5 15 2 19 %
2.2. % 52 14 16 7 9 %

Q1.1. Are you on ARVt. Kungabe ukuma ARVt [ ]

or a PLWHA. Noma uphila negciwane kuphela? [   ]

Q1.2 Which age group do you fall in?

Ingabe iminyaka yakho iphakathi kuka?

1.2.1:14 – 25 %

Answer the questions scaled from 1 to 5. Mark with X, where applicable.

Scale codes: 1- Never, 2 – Rarely, 3 – Sometimes, 4 – Frequently and 5 – Always

Phendula lemibuzo elandelayo ngokufaka inombolo eyodwa phakathi kuka 1 kuya ku 5. Beka uphawu X maqondana nenombolo efanele.

  1. Akukaze, 2. Nje, 3. kuyenzeka, 4. Njalo, 5. Njalo njalo.

Q2.1. and 2.2.

Findings: The responses of this age group 14 – 25 as far as living with the virus and being on ARVs as supposedly a punishment or a blessing from God is almost similar to the general findings of the comprehensive report. This is the case up to the age group of 35.

 

Reasons: Once the young people have discovered their status, they are more careful to leave positive lives. Accessing ARVs is a blessing – it’s like finding a second chance to live again.

Recommendations: Though those who feel that for example being a person PLWHA is punishment from God are few that 19% is sizable enough to be given attention towards possible change of perception

SECTION 3: PERCEPTIONS AND EXPERIENCES IN RELATION TO MEMBERS OF YOUR HOUSEHOLD OR FAMILY

ISIGABA3: IZIMVO NOSUKE WAHLANGABEZANA NAKHO KULABO OHLAL NABO

1 2 3 4 5 Total
Q3.1. During taking treatment do members of your 33 20 37 80 75 246
household give you support when needed? Or do
members of your household support you as a
PLWHA
Ingabe abomdeni bayakulandela ukwelashwa
kwakho bakunike usizo lapho kudingeka? Noma
abomdeni baya kusekela nje ngo PLWHA

Q3.1. and 3.2

Finding(s): Families are supportive. Individual family members are also supportive.

Reason(s): Families encourage PLWHA/ and those on ARV to take their treatment. They remind them of the time to take drugs. Families’ support where more than one person is living with the virus and or is on ARVS. Families tell encouraging statements like for these young people, to take their treatment because they still have a long life go leave.

Recommendation(s): Family camps it is recommended must continue.

SECTION 4: PERCEPTIONS AND EXPERIENCES IN RELATION TO YOUR PLACE OF WORSHIP

ISIGABA 4: IZIMVO NOSUKE WAHLANGABEZANA NAKHO ENKOLWENI YAKHO

1 2 3 4 5 Total
Q4.1. Do you feel discriminated in a religious 150 29 57 10 8 246
situation? (both ARV and PLWHA)
Uzizwa ubandlululwa yini endaweni okukhulunywa
ngezenkolo? (kubobonke – ARV/ PLWHA)
Q4.2. Do people in your place of worship encourage 20 33 36 61 104 246
you to adhere to ARV? In a religious situation do
you feel encouraged to adhere to ARV or live
positively with virus?
Endaweni okukhulunywa kuyo ngezenkolo uzizwa
ukhuthazeka ukuthatha imishanguzo ngendlela
ARV? Noma endaweni okukhulunywa ngezenkolo
uzizwa ukhuthazeka ukuba nemicabango emihle?
Weighing 4.1. 150 58 171 40 40
Weighing 4.2 20 66 108 244 520
4.1. % 61 12 23 4 3 %
4.2. % 8 13 15 25 42 %

Q4.1. and 4.2.

Finding(s): Religious Institutions are found to be supportive by 61% and people at places of worship are found to be always encouraging by 42%

Reason(s): The church has discovered that it infected and affected. People on the pews and ministers are also infected and affected by the virus and some are on ARV treatment. Sermons on HIV and AIDS have changed from the negative to the positive. Tent evangelists pray for PLWHA and for healing from God. Tent evangelists are giving hope. The church is now beginning to understand and get education on HIV and AIDS and on how to care for people living with the virus and those on treatment.

Recommendation(s): Continue doing workshops to educate the religious sector on HIV and AIDS. Encourage churches to form support groups. Churches must be encouraged to visit people at home. Churches must be encouraged to give both spiritual and material support.

SECTION 5: PERCEPTIONS AND EXPERIENCES IN RELATION TO HEALTH CENTRES

ISIGABA: IZIMVO NOSUKE WAHLANGABEZANA NAZO EZIKHUNGWENI ZEZEMPILO

1 2 3 4 5 Total
Q5.1. Do you experience discrimination by the 125 32 63 12 5 246
health care system? (to both ARV and PLWHA)
Ingabe uyahlangabezana nokubandlululwa
ezikhungweni zezempilo? (Kubobonke ARV/
PLWHA)
Q5.2. Do you get the required help by the health care 23 45 37 57 81 246
system, when needed? (to both ARV and PLWHA)
Ingabe uyaluthola usizo ezikhungweni zezempilo
ngesikhathi oludinga ngalo? (Kubobonke ARV/
PLWHA)
Weighing 5.1. 125 64 189 48 25
Weighing 5.2. 23 90 111 228 405
5.1. % 51 13 26 5 2 %
5.2. % 9 18 15 23 33 %

Q5.1. and 5.2.

Finding(s): 51% of the young people say they have never experienced any discrimination from the health institutions. And 33% say they always find the help they need and 23% say positively they do frequently get the help they need.

Reason(s): The nurses are educated on HIV and AIDS related matters and sensitivities. Some nurses are also infected and affected by HIV and AIDS. There are special and privately demarcated safe spaces and places for PLWHA and those on ARVs.

Recommendation(s): We recommend that health institutions continue improving on the good work they are doing. Encourage more health institutions to take the queue from those who are doing well in handling the situation of HIV and AIDS.

Age Group 25 – 35

Total People Interviewed: 465

SECTION 1: PERSONAL INFORMATION BY AGE GROUP

ISIGABA 1: IMINININGWANE YAKHO NGEMINYAKA

Q1.1. Are you on ARVt. Kungabe ukuma ARVt [ ]

or a PLWHA. Noma uphila negciwane kuphela? [   ]

Q1.2 Which age group do you fall in?

Ingabe iminyaka yakho iphakathi kuka?

1.2.4: 25 – 35 [■] %

Answer the questions scaled from 1 to 5. Mark with X, where applicable.

Scale codes: 1- Never, 2 – Rarely, 3 – Sometimes, 4 – Frequently and 5 – Always

Phendula lemibuzo elandelayo ngokufaka inombolo eyodwa phakathi kuka 1 kuya ku 5. Beka uphawu X maqondana nenombolo efanele.

  1. Akukaze, 2. Nje, 3. kuyenzeka, 4. Njalo, 5. Njalo njalo.

SECTION    2:   PERCEPTIONS   AND   EXPERIENCES   IN   RELATION   TO YOURSELF3

ISIGABA 2: IZIMVO NOSUKE WAHLANGABEZANA NAKHO

1 2 3 4 5 Total
Q2.1. Have you ever felt that being on 319 27 47 19 53 465
ARV/PLWHA is a punishment from god.
Ucabanga ukuthi ukuba kuma ARV/PLWHA
kuyisijeziso esivela kuNkulunkulu.
Q2.2. Have you ever felt that being on 166 56 116 78 38 465
ARV/PLWHA is a blessing from God
Ucabanga ukuthi ukuba kuma ARV/PLWHA
kuyisibusiso esivela kuNkulunkulu.
Weighing 2.1. 319 54 141 76 265
Weighing 2.2. 166 112 348 312 190
2.1. % 69 6 10 4 11 %
2.2. % 36 12 25 17 8 %

Q2.1 and 2.2.

Finding(s): 69% of the age group 25 – 35 feel that living with the virus and being on ARV treatment is not a punishment from God. And 36: feel like it is a blessing from God. This group which was categorised for their level of maturity indeed gave a balanced view between the polarities of punishment and blessing from God as shown by the matrix above

 

3 Scale is ascending in strength = 1 (weak) to 5 (strongest)

 

Reason(s): The 68% of people interviewed say it is written in the Bible that a time will come when diseases will increase. What is happening is the fulfillment of the scriptures. The 11% who responded that they feel like being punished by God reason that they are separated from God and that they are being punished because they have not fulfilled the Ten Commandments

Recommendation(s): As a matured group they should be encouraged to keep on taking positive decisions. This group, we realise are at a marriageable age. They comprise the working class or economically active class. They are very sexually active. They are at the prime of their lives. And bout 50%, reside presently in rural areas or areas under tribal authority. From this background we recommend: This report must be made available to traditional leaders, political leaders, implicated government departments and churches to implement recommendations best suited for them.

SECTION 3: PERCEPTIONS AND EXPERIENCES IN RELATION TO MEMBERS OF YOUR HOUSEHOLD OR FAMILY

ISIGABA3: IZIMVO NOSUKE WAHLANGABEZANA NAKHO KULABO OHLALA NABO

1 2 3 4 5 Total
Q3.1. During taking treatment do members of your 24 25 58 192 165 465
household give you support when needed? Or do
members of your household support you as a
PLWHA
Ingabe abomdeni bayakulandela ukwelashwa
kwakho bakunike usizo lapho kudingeka? Noma
abomdeni baya kusekela nje ngo PLWHA
Q3.2. Have you ever felt as if anyone in your 266 80 81 17 21 465
household does not want to get involved? (For both
ARV person and PLWHA)
Kuyekwenzeke kube khona emndenini
abangathandi ukuzibandakanya nokwelashwa
kwakho? (Kubobonke abaku ARV / PLWHA
Weighing 3.1. 24 50 174 768 825
Weighing 3.2. 266 160 243 68 105
3.1. % 5 5 12 41 35 %
3.2. % 57 17 17 4 5 %

Q3.1 and 3.2.

Finding(s): Clearly families and members of households do support. A record of 76% for household support combining those who frequently and always get it is commendable. 57% have scored that they have never experienced lack of support from individual members of the households.

Reason(s): The 5% – 10% who feel no support from the households and its individuals are those who have not disclosed. They are those who stigmatise themselves. They are those who have communication breakdown in the family. They are those who do not take care of themselves. And Some who mix treatment and do not disclose.

Recommendation(s): Emphasise the importance of disclosure. Create more awareness. Conduct family camps.

SECTION 4: PERCEPTIONS AND EXPERIENCES IN RELATION TO YOUR PLACE OF WORSHIP

ISIGABA 4: IZIMVO NOSUKE WAHLANGABEZANA NAKHO ENKOLWENI YAKHO

1 2 3 4 5 Total
Q4.1. Do you feel discriminated in a religious 290 47 83 29 18 465
situation? (both ARV and PLWHA)
Uzizwa ubandlululwa yini endaweni okukhulunywa
ngezenkolo? (kubobonke – ARV/ PLWHA)
Q4.2. Do people in your place of worship encourage 84 36 101 117 129 465
you to adhere to ARV? In a religious situation do
you feel encouraged to adhere to ARV or live
positively with virus?
Endaweni okukhulunywa kuyo ngezenkolo uzizwa
ukhuthazeka ukuthatha imishanguzo ngendlela
ARV? Noma endaweni okukhulunywa ngezenkolo
uzizwa ukhuthazeka ukuba nemicabango emihle?
Weighing 4.1. 290 94 249 116 90
Weighing 4.2. 84 72 303 468 645
4.1. % 62 10 18 6 4 %
4.2. % 18 8 22 25 28 %

Q4.1 and 4.2

Finding(s): 62% of the people answered that they never felt discriminated by their place of worship and 28% answered that the churches encourages them. That means there is less discrimination experienced in places of worship.

Reason(s): People at churches have more knowledge about the disease compared to the past. Ministers have also been exposed to begin to understand the workings of the disease. There is an increased understanding of what and how the virus works.

Recommendation(s): Continue and encourage positive preaching in the churches. The church must continue with prayers to encourage people to live positively.

SECTION 5: PERCEPTIONS AND EXPERIENCES IN RELATION TO HEALTH CENTRES

ISIGABA: IZIMVO NOSUKE WAHLANGABEZANA NAZO EZIKHUNGWENI ZEZEMPILO

1 2 3 4 5 Total
Q5.1. Do you experience discrimination by the 305 61 74 12 10 465
health care system? (to both ARV and PLWHA)
Ingabe uyahlangabezana nokubandlululwa
ezikhungweni zezempilo? (Kubobonke ARV/
PLWHA)

Q5.1. and 5.2.

Finding(s): 65% of the people in this age group say they do not experience discrimination and lack of cooperation in the health institutions. And 32% say they do receive the help they need from the health system whenever they need it. 5% say they do get some unconstructive criticism at the health institutions.

Reason(s): Some nurses are not informed about the sensitivities of working with PLWHA and those on ARVt. Some nurses like to make remarks to embarrass patients and find joy in doing so.

Recommendation(s): The patients should expose such health care givers to their superiors. Continued education on how to treat PLWHA and those on ARVt should be done incessantly.

Age Group 35 – 45

Number of People Interviewed: 281

SECTION 1: PERSONAL INFORMATION BY AGE GROUP

ISIGABA 1: IMINININGWANE YAKHO NGEMINYAKA

Q1.1. Are you on ARVt. Kungabe ukuma ARVt [ ]

or a PLWHA. Noma uphila negciwane kuphela? [   ]

Q1.2 Which age group do you fall in?

Ingabe iminyaka yakho iphakathi kuka?1.2.5: 35- 45 [■] %

SECTION 2: PERCEPTIONS AND EXPERIENCES IN RELATION TO YOURSELF4

ISIGABA 2: IZIMVO NOSUKE WAHLANGABEZANA NAKHO

1 2 3 4 5 Total
Q2.1. Have you ever felt that being on 220 12 18 7 23 281
ARV/PLWHA is a punishment from God.
Ucabanga ukuthi ukuba kuma ARV/PLWHA
kuyisijeziso esivela kuNkulunkulu.
Q2.2. Have you ever felt that being on 82 25 74 72 27 281
ARV/PLWHA is a blessing from God
Ucabanga ukuthi ukuba kuma ARV/PLWHA
kuyisibusiso esivela kuNkulunkulu.
Weighing 2.1. 220 24 54 28 115
Weighing 2.2. 82 50 222 288 135
2.1. % 78 4 6 2 8 %
2.2. % 28 9 26 26 10 %

Q2.1. and 2.2.

Finding(s): 78% say it is not a punishment from God to them as PLWHA or people on ARVt. 8% say it is a punishment from God. 28% say they never saw their status as a blessing from God against 10% who say it is a blessing from God to be PLWHA and being on ARVt.

Reason(s): The interviewees say understanding being PLWHA as a curse is religiously ignorant. They say there is no verse which says in the Bible disease is a blessing from God. Many of them who think so insist this disease is a curse from God.

Recommendation(s): More preaching must be done in order for all people to understand that living with HIV is not a curse.

SECTION 3: PERCEPTIONS AND EXPERIENCES IN RELATION TO MEMBERS OF YOUR HOUSEHOLD OR FAMILY

ISIGABA3: IZIMVO NOSUKE WAHLANGABEZANA NAKHO KULABO OHLALA NABO

1 2 3 4 5 Total
Q3.1. During taking treatment do members of your 14 12 33 126 96 281
household give you support when needed? Or do
members of your household support you as a
PLWHA
Ingabe abomdeni bayakulandela ukwelashwa
kwakho bakunike usizo lapho kudingeka? Noma
abomdeni baya kusekela nje ngo PLWHA

Q3.1 and 3.2.

Finding(s): 5% of the people in the age group 35 – 45 say they have never experienced discrimination or not being supported by their families. 34% say they always get help from their families. Combined with those who say they are frequently getting help from households they add up to a remarkable 79%. Concerning care from individual household members, 60% say they have never felt neglected and only 5% say they always felt neglected by the individual household members.

Reason(s): For those who are married or have relationship, they are afraid to disclose to the partners and to the children. They are afraid to turn and ask help from the household. But those who have disclosed and asked for help they do get it and are in most cases not discriminated against nor neglected.

Recommendation(s): The key solution here is discloser to the loved ones. People must be encouraged to swallow their pride and disclose. The churches can run workshops of awareness and the importance of disclosure. Workshops on the importance of communication and openness in the household must be run.

SECTION 4: PERCEPTIONS AND EXPERIENCES IN RELATION TO YOUR PLACE OF WORSHIP

ISIGABA 4: IZIMVO NOSUKE WAHLANGABEZANA NAKHO ENKOLWENI YAKHO

1 2 3 4 5 Total
Q4.1. Do you feel discriminated in a religious 203 20 42 4 12 281
situation? (both ARV and PLWHA)
Uzizwa ubandlululwa yini endaweni okukhulunywa
ngezenkolo? (kubobonke – ARV/ PLWHA)
Q4.2. Do people in your place of worship encourage 19 20 69 91 82 281
you to adhere to ARV? In a religious situation do you
feel encouraged to adhere to ARV or live positively
with virus?
Endaweni okukhulunywa kuyo ngezenkolo uzizwa
ukhuthazeka ukuthatha imishanguzo ngendlela ARV?
Noma endaweni okukhulunywa ngezenkolo uzizwa
ukhuthazeka ukuba nemicabango emihle?
Weighing 4.1. 203 40 126 16 60
Weighing 4.2. 19 20 69 91 82

Q4.1 and 4.2.

Finding(s): The religious communities are put in a good light emerging from this research. 72% of the people interviewed said that they have never felt discriminated at places of worship. And those responded concerning individual fellow worshippers giving support and encouragement frequently and always combined add to 55%.

Reason(s): Some of the people who do not get sufficient help say they are bewitched. These people do not want to accept that they are infected with HIV or that they are sick. Other churches do not believe in medicine and therefore would not bother to look up to medical or health institutions for assistance. These churches which do not believe in medicine insist that prayer for healing is the only solution.

Recommendation(s): Individual fellow worshippers must be encouraged the more to give and make an added effort to support PLWHA and those on ARVt. The churches must run workshops on awareness of the myths and forms of denial some people are entangled in and try to dispel such myths.

SECTION 5: PERCEPTIONS AND EXPERIENCES IN RELATION TO HEALTH CENTRES

ISIGABA: IZIMVO NOSUKE WAHLANGABEZANA NAZO EZIKHUNGWENI ZEZEMPILO

1 2 3 4 5 Total
Q5.1. Do you experience discrimination by the 199 27 42 6 7 281
health care system? (to both ARV and PLWHA)
Ingabe uyahlangabezana nokubandlululwa
ezikhungweni zezempilo? (Kubobonke ARV/
PLWHA)
Q5.2. Do you get the required help by the health care 6 20 67 108 80 281
system, when needed? (to both ARV and PLWHA)
Ingabe uyaluthola usizo ezikhungweni zezempilo
ngesikhathi oludinga ngalo? (Kubobonke ARV/
PLWHA)
Weighing 5.1. 199 54 126 24 35
Weighing 5.2. 6 40 201 432 400
5.1. % 71 10 15 2 2 %
5.2. % 2 7 24 38 28 %

Q5.1 and 5.2.

Finding(s): The health care centres are seen in a good light as revealed by this research. 71% of the respondents said they have never felt discriminated in the health care places. Combined together those who say thy frequently get help when need (38%) and those who say they always get help when required (28%) add to 66%.

Reason(s): The health care personnel have come to terms with the fact that HIV does not discriminate by age, gender nor profession. The professionals having discovered that they are also infected and affected are beginning to handle the situation differently and in a positive and supportive manner. They have come to realise that HIV is a common disease

– a pandemic. Health facilities have more accommodation and spaces for PLWHA and those who are on ARVt.

Recommendation(s): The churches who are working in the area of HIV and AIDS must seek to be in partnership with the health care institution and contribute their share of the fight against HIV and AIDS.

Age Group 45 – 50

Number of People Interviewed: 89

SECTION 1: PERSONAL INFORMATION BY AGE GROUP

ISIGABA 1: IMINININGWANE YAKHO NGEMINYAKA

Q1.1. Are you on ARVt. Kungabe ukuma ARVt [ ]

or a PLWHA. Noma uphila negciwane kuphela? [ ]

Q1.2 Which age group do you fall in?

Ingabe iminyaka yakho iphakathi kuka?

1.2.7: 45-50 [■] %

Answer the questions scaled from 1 to 5. Mark with X, where applicable.

Scale codes: 1- Never , 2 – Rarely , 3 – Sometimes, 4 – Frequently and 5 – Always

Phendula lemibuzo elandelayo ngokufaka inombolo eyodwa phakathi kuka 1 kuya ku 5. Beka uphawu X maqondana nenombolo efanele.

  1. Akukaze, 2. Nje, 3. kuyenzeka, 4. Njalo, 5. Njalo njalo.

SECTION    2:   PERCEPTIONS   AND   EXPERIENCES   IN   RELATION   TO YOURSELF5

ISIGABA 2: IZIMVO NOSUKE WAHLANGABEZANA NAKHO

1 2 3 4 5 Total
Q2.1. Have you ever felt that being on ARV/PLWHA is a 68 4 8 4 5 89
punishment from god.
Ucabanga ukuthi ukuba kuma ARV/PLWHA kuyisijeziso
esivela kuNkulunkulu.
Q2.2. Have you ever felt that being on ARV/PLWHA is a 48 1 17 15 8 89
blessing from God
Ucabanga ukuthi ukuba kuma ARV/PLWHA kuyisibusiso
esivela kuNkulunkulu.
Weighing 2.1. 68 8 24 16 25
Weighing 2.2. 48 2 51 60 40
2.1. % 76 4 8 4 7 %

Q2.1 and 2.2.

Finding(s): The age group of 45 – 50 responded on the questions of punishment and blessing from God for being PLWHA or being on ARVt, 76% said it is not a punishment from God but only 54% responded it is on the other hand not a blessing from God against 9% which responded is a blessing from God. This group by observation almost canceled out that as PLWHA and on ARVt, God is not to be blamed (76%) and yet they have never felt it a blessing from God (54%)

Reason(s): This group responded it is a blessing to get ARVs but it is not a blessing to be HIV positive. They responded God is not punishing them but is giving them a second chance to consider their relationship with God and helps by providing ARVs.

Recommendation(s): Equal emphasis and effort must be given to attending to the elderly people when it comes to dealing with the issues of HIV and AIDS. Conduct family camps of HIV and AIDS including and involving the elderly as well.

SECTION 3: PERCEPTIONS AND EXPERIENCES IN RELATION TO MEMBERS OF YOUR HOUSEHOLD OR FAMILY

ISIGABA3: IZIMVO NOSUKE WAHLANGABEZANA NAKHO KULABO OHLALA NABO

1 2 3 4 5 Total
Q3.1. During taking treatment do members of your 8 6 11 33 32 89
household give you support when needed? Or do
members of your household support you as a PLWHA
Ingabe abomdeni bayakulandela ukwelashwa kwakho
bakunike usizo lapho kudingeka? Noma abomdeni
baya kusekela nje ngo PLWHA
Q3.2. Have you ever felt as if anyone in your 57 10 16 2 4 89
household does not want to get involved? (For both
ARV person and PLWHA)
Kuyekwenzeke kube khona emndenini abangathandi
ukuzibandakanya nokwelashwa kwakho? (Kubobonke
abaku ARV / PLWHA
Weighing 3.1. 8 12 33 132 160
Weighing 3.2. 57 20 48 8 20
3.1. % 9 7 12 37 36 %
3.2. % 64 11 18 2 4 %

Q3.1. and 3.2.

Finding(s): As it was the case with other age groups, the households and individuals in households give a lot of support according to the age group of 45 – 50. Combining that they frequently get support (37%) and that they always get support (36%) this group feel supported 73% than otherwise. And 64% of the time they feel individual members paying attention and considerately giving support.

Reason(s): More people are becoming aware of the disease which is affecting the whole community, parents, children, workers, breadwinners and professionals. That you find at times more than one family member infected gives reason that there is no point for others who are affected not to give help and support.

Recommendation(s): Educate communities continually. Assist people to disclose to families. Do more family camps. Do door-to-door campaigns.

SECTION 4: PERCEPTIONS AND EXPERIENCES IN RELATION TO YOUR PLACE OF WORSHIP

ISIGABA 4: IZIMVO NOSUKE WAHLANGABEZANA NAKHO ENKOLWENI YAKHO

1 2 3 4 5 Total
Q4.1. Do you feel discriminated in a religious situation? 56 13 12 7 1 89
(both ARV and PLWHA)
Uzizwa ubandlululwa yini endaweni okukhulunywa
ngezenkolo? (kubobonke – ARV/ PLWHA)
Q4.2. Do people in your place of worship encourage you 7 5 20 23 34 89
to adhere to ARV? In a religious situation do you feel
encouraged to adhere to ARV or live positively with
virus?
Endaweni okukhulunywa kuyo ngezenkolo uzizwa
ukhuthazeka ukuthatha imishanguzo ngendlela ARV?
Noma endaweni okukhulunywa ngezenkolo uzizwa
ukhuthazeka ukuba nemicabango emihle?
Weighing 4.1. 56 26 36 28 5
Weighing 4.2. 7 10 60 92 170
4.1. % 63 15 13 8 1 %
4.2. % 9 6 22 26 38 %

Q4.1 and 4.2.

Finding(s): Once more about the places of worship it is by the respondents, 63% of them that they never felt discriminated due to them being PLWHA nor being on ARVt. And that 38% of individual members at places of worship always give support and 26% frequently give encouragement.

Reason(s): The churches have a clear picture of the situation and are beginning to respond responsibly

Recommendation(s): Attention should be paid to individual members to wake up to the call to give support to PLWHA and those on ARVt.

SECTION 5: PERCEPTIONS AND EXPERIENCES IN RELATION TO HEALTH CENTRES

ISIGABA: IZIMVO NOSUKE WAHLANGABEZANA NAZO EZIKHUNGWENI ZEZEMPILO

1 2 3 4 5 Total
Q5.1. Do you experience discrimination by the health 58 8 17 6 0 89
care system? (to both ARV and PLWHA)
Ingabe uyahlangabezana nokubandlululwa
ezikhungweni zezempilo? (Kubobonke ARV/ PLWHA)
Q5.2. Do you get the required help by the health care 1 8 13 38 30 89
system, when needed? (to both ARV and PLWHA)
Ingabe uyaluthola usizo ezikhungweni zezempilo
ngesikhathi oludinga ngalo? (Kubobonke ARV/
PLWHA)
Weighing 5.1. 58 16 51 24 0
Weighing 5.2. 1 16 39 152 150
5.1. % 65 9 19 7 0 %
5.2. % 1 9 15 43 34 %

Q5.1 and 5.2.

Finding(s): Once more the health care institutions are spoken well of by the age group of 45 – 50. 65% said they have not felt discriminated against by the health care practitioners. Combining those who are frequently getting the help they need (43%) and those who always get the help whenever they need it (34%) the health care system is servicing people and 77% are satisfied.

Reason(s): The reasons mentioned by the other age groups hold – that there is sufficient privacy and protection, and that is a high level of understanding how to handle PLWHA and those on ARVt. This age group is more matured. They are responsible family people. They have a lot a stake in terms of their estate, their dignity and position of being role models. This group is conscious of the fact that they still wan to make a contribution in raising children and help with raising probably grand-children.

Recommendation(s): Run workshops for nurses to help them create a situation where people can easily disclose their status. The same workshops could be run for families and doctors.

Names of Researchers

  1. Benedict Dube…….……………………0722604606
  2. Biyela Nokuthula ………………………0846032427
  3. Dlamini Thami …….………………….0725677368
  4. Jila Zandile…………………..………..0788833613
  5. Khanyile Ntombifikile ………….…….0847476895
  6. Khanyile Sbonelo ……………….……0833472155
  7. Kitengie John………………………….0765547021
  8. Kubheka Sbongile ………………..…..0764275890
  9. Mhlongo Lucky……………………….0728901345