People living with AIDS / HIV in Botswana : a needs assessment

List of abbreviations used throughout this article: AIDS acquired immune deficiency syndrome ART anti retroviral therapy ARV anti retroviral COCEPW A Coping Centre for People Living with HIV/AIDS DOTS directly observed treatment strategy (for taking anti-TB medication) HIV human immune deficiency virus NACA National Aids Co-ordinating Association PLWA/H people living with AIDS/HIV UNAIDS United Nations Program on HIV/AIDS Abstract: Curationis 30(3): x-y A deficit in information and knowledge regarding people living with AIDS in Botswana, hampering health care planning and satisfactory health care delivery to these people, necessitated the needs assessment reported on in this paper. Not only did self-imposed alienation and societal levels of stigma surrounding HIV and AIDS force many people living with AIDS/HIV (PLWAH) into silence and denial of their HIV+ve diagnosis, thereby creating knowledge and information deficits. These same factors also pose challenges for conducting a needs assessment among these persons. Consequently, a 73 item questionnaire was administered to a convenience sample of 39 male and 77 female PLWAH in Botswana. Maslow’s Hierarchy of Human Needs served as a general theoretical point o f departure for the needs analysis and the 73 items represented needs at all levels of this hierarchy.


Introduction
In general, there is a growing appreciation o f the importance o f how health-service recipients feel about, and how satisfied they are with, the care and/or treatment they receive.However, the self-imposed and societal levels of stigma surrounding HIV and AIDS have forced people living with AIDS/HIV (PLWAH) into silence and denial o f their HIV+ve diagnosis.This largely prevented contributions by the PLWAH to the quality o f life and health care in the context o f living with AIDS.Lack o f information and knowledge about their needs, core functioning and well being impede the development o f quality health care and support, necessitating health care practitioners to base their services on what they deem appropriate.The situation is no different in Botswana and n ecessitated an analysis o f the needs o f PLWAH in order to render care to these people relevant to their own needs, rather than care based on the health care providers' perceptions.This paper reports the findings o f a needs assessment conducted among PLWAH in Botswana

Background information
B otsw ana is a lan d lo ck ed co u n try located in the centre o f southern Africa, sharing borders with South A frica, N am ibia and Z im babw e.It has a population o f 1.7 million, 40% o f whom are younger than 18 years o f age (Tlou, 1996:27).B o tsw an a's econom y is growing at a rate o f 6.6%, helping the government in its endeavours to address poverty issues.However, the HIV/AIDS ep id em ic, affe c tin g 38.8% o f the econom ically active population, has negative implications for current and future economic growth.An estimated 258 000 citizens o f Botswana, aged 15-49 y ears, are in fec ted w ith HIV.The prevalence o f HIV am ong pregnant women aged 15-49 was, in 2000, reported to be 35.4%.Approximately one out of eight babies is infected with HIV at birth (N A CA , 2002:49;UNDP, 2000:7).P ro jectio n s in d icate th at by 2010 Botswana's children under 18 years of age who have lost one or both parents could range from 159 000 to 214 000 (UNDP & Govt of Botswana, 2000:18-19).
Reports o f rejection and social distancing o f PLWAH have been com m on in Botswana (Bara, 2002:1-9;Donnelly, 2003:1-3;Tlou, 2002:654-663).Pleas for help by President Mogae (2000:13) and the report by Piot, Bartos, Ghys, Walker and Schwartlander (2001:968) about the scope and the devastating impact o f the AIDS epidemic in Botswana and the region m ight discourage people and cause them to lose hope.However, there have been more optimistic studies as well, outside Botswana in the late 1990s, that investigated the link between levels o f stigma and levels o f motivation o f PLWAH to lead positive lives inspired by hope and dream s for the future (Barroso & Powell-Cope, 2000:340-353;Nannis, Patterson & Semple, 1997:22;Swindells, Mohr, Justis, Berman;Squier, W agener&Singh, 1999:383-391).This secrecy about being HIV+ve has largely prevented contributions by the PLWAH to the definition o f quality o f life in the context o f living with a life-threatening illness.This lack o f information about their needs, core functioning and well being as HIV+ve people influences the development o f quality health care and support, since the care providers resort to offering services based on their perceptions as to what is right and/or best for PLWAH, without initial inputs and without continuous feedback from the PLWAH concerned.

Problem statement
There are large numbers o f PLWAH in Botswana.No needs assessment has been documented which identifies the PLW A H s' needs as p e rc e iv e d by themselves in Botswana.Health care is provided to PLWAH in terms o f the health care workers' perceptions about these needs.This survey attempted to identify the PLWA/Hs' needs as reported by themselves in responding to open and closed ended items in self completion questionnaires.Such data could then be utilised to design programmes to meet the PLWA/Hs' specific needs.

Research design
A survey d esig n o f lo w -co st w as conducted over a time period o f four months during 2000.This survey explored the perceptions o f the PLWAH concerning the quality o f their lives, deficiency and being needs and whether the PLWAH pursued higher levels of well-being.
The motivation for this survey by and for PLWAH was to persuade the HIV+ve people to inform others about their needs and concerns and to help address some o f the suffering caused by HIV and AIDS in Botswana.

Research population
The research population comprised all PLWAH in Botswana.However, as this is a hidden population in Botswana and as no census exists about this population, only HIV+ve persons who had told at least one o th er p erson ab out th eir HIV+ve status (usually the person who requested their participation in the needs assessm en t and handed th em the questionnaire to be completed) could be in clu d ed in the study p o p u la tio n .Furthermore, each respondent had to be sufficiently proficient in English to be able to complete the questionnaire.This proved to be no problem as English is the official language of Botswana and all the respondents could read and write E n g lish and co u ld u n d ersta n d the questions.The researcher's contact telephone numbers were supplied on the questionnaire in case any respondent wished to clarify any aspect or did not understand any question.

Sampling procedure
In order to gain access to an unknown, hidden population convenience sampling had to be used.B urns and G rove (2001:376-377)  to obtain in other ways ... When the researcher has found a few subjects with the needed criteria, the subjects are asked for assistance in getting in touch with others who have similar characteristics".In this case, the PLWAH might not have been approachable by the researcher, and it could have been interpreted as being a breach o f confidentiality if the person they confided in about their HIV+ve status shared this information with the researcher.C onsequently, PLWAH know n to th e au th o r th ro u g h her involvement with the Coping Centre for P eople liv in g w ith A ID S /H IV (C O C E PW A ) w ere re q u ested to participate in the needs assessment by completing a questionnaire and to request any other PLWAH they might know o f to do likewise.The geographical starting p o in t fo r the sn o w b all sam pling procedure was thus the COCEPWA cen tre in G ab ero n e, the cap ital o f Botswana.A total o f 116 completed questionnaires w ere returned to the researcher.All the respondents were HIV+ve, had disclosed their HIV+ve status to at least one other person, and could read and write English.
A n o n -ran d o m and co n v e n ie n ce snowball sampli ng technique was thus employed, as informed by a review of previous studies o f PLWAH.All those studies used n o n-random sam pling m ethods (Bunting, 1996:64;Erlen & Mellors, 1999:7;Ingram & Hutchinson, 1999:93;Jirap a et, 2000:34;K vitz, C ritte n d e n , M adura & W arnecke, 1994:191;Metcalfe, Langstaff, Evans, Paterson & Reid, 1998:30;Murphy, Koranyi, Crim & Whited, 1999:111).Snowball sampling techniques were used in these quantitative and qualitative stu d ie s, sin ce tru ly re p re se n ta tiv e samples were impossible to obtain due to the fact that this is a hidden population, which made it impossible to compile a cen su s (F lask eru d , L esser, D ixon, Anderson, Conde, Kim, Koniak-Griffin, Strehlow, Tullmann & Verzemnieks, 2002:74-85).Since it is unlikely that marginalised groups such as the PLWAH will reveal themselves, one is generally unable to rely on probability samples, even if the whole population o f a country could be identified (Platzer & James, 1997:626).

Research instrument
Data were collected using structured questionnaires, in preference to face-toface interviewing, to protect the privacy of the PLWAH.It was perceived to be less th re a te n in g to co m p lete questionnaires than to be tape-recorded during interviews or to participate in focus group discussions w ith other participants.Matched with the sampling techniques used, one advantage o f this method was that a confidential study of a hidden p o p u la tio n , w ho w ould otherw ise not be id en tifiab le, was possible.The PLWAH were unlikely to participate in a study that failed to guarantee their anonymity.The research assistants, both members o f the Coping C entre for P eople w ith AID S (C O C EPW A ), w ould not have encouraged other PLWAH to participate in any study unless it guaranteed total anonymity.
A 73-item questionnaire was used to survey the needs o f a non-random convenience sample o f 39 male and 77 female PLWAH in Botswana.Questions 1 -31 asked about demographic variables, HIV testing and disclosure patterns.Q uestions 32-49 related to coping m ech an ism s, and q u estio n s 50-69 addressed support issues.The last four questions, 70-73, were questions about how the participants had generally felt during the month preceding the survey.In S ection 4 o f the q u e stio n n a ire participants could record com m ents, suggestions and thoughts they might have had during or after answering the 73 questions (Zuyderduin, 2001:59-70).C o n tact te le p h o n e num bers w ere supplied in case any respondent wished to discuss any aspect with the researcher, or if any respondent wished to obtain further information about HIV/AIDS and/ or about COCEPWA.Each PLWAH co m p leted the q u estio n n aire and m ailed it to the researcher.Through this survey, 116 PLWAH were approached to complete questionnaires; all 116 participants (100%) returned questionnaires o f which at least 90% o f all items were completed and these were included in the survey's data analysis.

Reliability and validity o f the research instrument
Previous studies on PLWAH posed the startin g p o in t fo r the selec tio n o f questions for the sections on stigma, discrimination, coping mechanisms used and support required by PLWAH.These questions were selected and evaluated against M aslow's Hierarchy o f Needs to ensure that needs at all levels were included.The questions were submitted to members o f COCEPWA, two nurse researchers and a statistician to evaluate the relevance o f the questions to the po ten tial needs o f PLWAH.A fter c o n su lta tio n s w ith a num b er o f stak eh o ld e rs, and e sp e cially w ith COCEPW A's m em bers, p o ten tially sensitive variables were deliberately excluded.These included questions about the number o f sex partners during the preceding year, the age at sexual debut, suicide attempts and drug abuse.
The validity or the meaningfulness o f the questionnaire was evaluated by piloting the questionnaire w ith m em bers o f COCEPWA.It was accepted that these persons had prior knowledge of particular problems as well as the range o f likely responses, since they lived with the experience of being HIV+ve in Botswana.The five persons who participated in the p ilo t study w ere ex clu d ed from participation in the actual study.As this was the first attempt to identify PLWAH' needs in Botswana, the research results can only be accepted as a departure point for future studies.These exploratory questions will need to be followed up by higher order q uestions, m ore rigid quantitative research co n tro ls, and probably also by qualitative research in order to explore specific variables in depth.

Data analysis
The data from the co m pleted questionnaires w ere translated into numerical codes to allow computer-based analysis, using the Epi-Info computer program .The nom inal data w ere classified and cross-classified using frequencies.The ordinal data were rankordered and percentages were calculated for the variables.The relationships betw een certain variables and their effects on positive living, and thus on the needs o f PLWAH in Botswana, were further explored statistically.

Scope and limitations of the survey
No generalisations were made from the sample to the entire population since the sample (n=116) was a small snowball (convenience) sam ple represen tin g persons who shared information about their HIV+ve status with at least one person at COCEPWA.Thus the results might not be generalisable to PLWAH who had not yet shared the information about their HIV+ve status with another Self-actualisation person, or who had no contact with COCEPW A m em bers, or w ho were unable to complete questionnaires.

Ethical considerations
The ethical issues pertinent to this survey related to whether or not "... individuals or communities may be helped or harmed by the conduct, publicity and results o f the research " (Bowser& Sieber, 1993:82).A ccording to th ese au th o rs it is a prerequisite for research on populations th at are stig m a tised to em pow er participants and get them to identify with the go als o f th e researc h .The participating PLWAH were accepted as peers for their experience and knowledge, and the survey provided them with an o p p o rtu n ity to m ake a genuine contribution towards enabling the health care services in Botswana to meet their needs as perceived by themselves, not by health care providers.

Informed consent
Discussions were held with members of COCEPWA who were willing to share insights, knowledge and experiences throughout the research process.Open communications were maintained with COCEPW A th ro u g h o u t the needs assessment, providing debriefing about the nature, findings and value o f the research, were essential components for obtaining informed consent.
The respondents knew that the needs assessment was based on the approval and support o f their peers, as represented by COCEPWA.Each respondent was free to participate or to refuse participation by re fu sin g to co m p lete the questionnaire.
Each PLWAH also had the right to terminate participation at any stage of completing the questionnaire, or not to answer specific questions.The PLWAH exercised these rights, explaining why different totals are reflected for different questions in the data analysis.

Anticipated benefits
N obody w as p aid for co m p letin g questionnaires.The anticipated benefits included th at the PLWAH had an opportunity to express their needs as perceived by themselves and thereby to help them selves, their peers and the health care workers to provide services geared to meeting their own needs, rather than their health care needs as perceived by and interpreted by the health care workers.

Anonymity
Q uestionnaires were handed out by m em bers o f COCEPW A w ho knew PLWAH.The anonymously completed q u estio n n aire s w ere p o sted to the researcher.Thus the researcher did not know who received questionnaires and the members of COCEPWA did not know who co m p leted an d /o r re tu rn e d questionnaires to the researcher.No follow-»up procedures were used as that might have destroyed the anonymity o f the respondents.The answers given to the specific items in the questionnaire were not identifiable to specific persons in the research report.order needs can emerge or be s a tifie d .L ow er "d e fic ie n c y " need s are dependent on actions by other people and include physical, safety, belonging and estee m needs (Maslow, 1999:168-169).

Theoretical framework used to contextualise data
The higher "being" needs, according to Maslow, are not dependent on other people but are met from within a person (Maslow, 1999:168-169).These needs for love, social ju stic e, dignity and the like are basic to the growth and development o f all people who aim to use all their qualities to reach higher levels o f being throughout their lifetime.In the case of the PLWAH, actions such as joining support groups and pro v id in g care and su p p o rt to th e ir peers illustrated their desire to fulfil higher needs.

Research results
The research results, obtained from a computerised analysis o f the completed questionnaires' data, as analysed with the Epilnfo program, will be presented in relation to the m ajor sections o f the questionnaire.

Biographic information
COCEPWA Gaborone was the starting point o f the referral chain for this nonrandom sample.The urban centres of Gaborone and Francistown comprised 65% o f the sample.O f the rest o f the PLWAH, 26% lived in villages and another 10% lived in remote rural areas.In Botswana PLWAH, when suffering illhealth, often move away from the urban areas and rent out their town houses/ rooms to generate income to help them subsist in the rural areas (Zuyderduin, 2001:28).
For every two women who participated in th e n eed s asse ssm e n t, one m an participated.This was not representative o f the overall ratio o f male to female HIV and AIDS cases in Botswana, which is estimated to be 1:1.The pattern o f both men and women being infected with HIV is in d ic a tiv e o f a p re d o m in a n tly heterosexual mode o f transmission in Botswana (McFadden, 1998:30-32;UNDP & Govt, o f Botswana, 2000:26).The pattern, nevertheless, conceals deepseated unequal gender relations and disparities in HIV prevalence rates betw een y o u n g e r m en and w om en.According to the 2000 Botswana Human D evelopm ent R eport by the UNDP (2000:26), the risk o f infection grows higher for young women in the age group 15-29 years.Three cases o f 15-19-yearold HIV+ve females were reported for every one HIV+ve male case in the same age group (UNDP & Govt, o f Botswana, 2000:26).This 3:1 ratio, as reported by the UNDP, w as confirm ed in this non-random sample o f 116 PLWAH, with 40 women and 12 men infected in the 15-29 years of age group.Figure 2 indicates that women were infected with HIV at a much younger age than men, and other studies have suggested that HIV in B otsw ana is transmitted from older men to younger girls, who in turn infect boys their own age (Tlou, 2002:659;Tlou, Rantona & Phaladze, 2001:65;UNDP & Govt, of Botswana, 2000:26-28).
In this survey, low levels o f education were reported.Not all the respondents had attended school but 52 PLWAH (45%) had attended up to primary school level.O nly 14 PLWAH (12% ) had completed their secondary education.Fewer than 10% o f the participants had enjoyed tertiary education.Level o f education correlated with employment data.Low levels o f full-time employment were reported; only 42 PLWAH (36%) were employed full time.
A reported monthly income o f less than BWP200 (or USD40 at the time o f the survey) during the preceding month was reported by 62 PLWAH (53%) (N=l 16) of which 42 were women (68%) (n=62).Being HIV+ve further depletes incomes.The immediate monetary cost o f HIV and AID S to the h o u seh o ld in clu d es increased expenditures on health, such as travel to the government clinics or hospitals (where citizens o f Botswana pay a fee o f BWP2 or US$0,40 for health care services).Patients or their relatives might also incur considerable costs when they opt to pay for second opinions about their own or their relatives' illness from traditional health care providers and/or private health care practitioners.H ouseholds m ight draw from th eir savings, dispose o f assets and incur debts to finance expenditures due to rising health care costs.In addition to these direct health care related costs, incomes m ight dw indle due to early retirem ent o f sick breadw inners and having to make contributions to finance relatives' funerals (MOH, 1997:22;UNDP & Govt of Botswana, 2000:18).
A nother factor that further depleted  Govt, o f Botswana, 2000:18-19).The government o f Botswana makes an effort to am eliorate some o f the hardships through social welfare measures, and providing food and school uniforms to vulnerable children in their community, according to 90 PLWAH (78%) in the survey.However, the persistence o f income inequality and poverty among its citizens, in particular the women, remains an area of concern for the Government of Botswana.Female-headed households constitute about 47% o f all households h av in g to su rv iv e on the low est household incomes (MOH, 1995:6) Lack o f understanding of what it means to be HIV+ve was reported by 37% of the PLWAH.This was not specific to PLWAH with low incomes, although 42% o f those who earned less than BWP200 re p o rted th at th ey did not re ally understand what HIV and AIDS meant.
Analysis by gender revealed that more men (49%) had a poor understanding than women (31 %).Most PLWAH tried to educate themselves about HIV and AIDS in the place where they lived, but 26% reported that they had no access to information relevant to living with HIV and AIDS.Maslow maintained that to meet their potential people need adequate conditions for making choices, which necessitate full access to information.M aslow ca u tio n e d th at useful information must not be hidden, so that people can choose without fear or social pressure (Maslow 1996b:29).The survey in d icated that in fo rm atio n w as needed urgently about HIV treatment (n=l 14); w elfare (n=53); and counselling services (n=42 PLWAH).Figure 3 displays the reasons for HIV testing among the study participants.

Figure4 Disclosure of HIV+ve status to other people
The data co llectio n process o f this survey depended on the participation o f PLWAH who had disclosed to at least one or m o re p erso n s.M any had disclosed their HIV+ve status only to the person who asked them to participate in this survey.The findings reported that 56% o f the surveyed PLWAH were completely "in", meaning that they had told fewer than five people that they were HIV positive.A smaller proportion (35%) had shared their HIV+ve status with 6 to 30 people, and were "half in/half out".Only 8 o f the PLWAH surveyed stated that they had gone public and had disclosed their HIV+ve status to more than50 people.This low number was not surprising, since even in the late 1999s, in B o tsw an a only 12 PLWAH had publicly disclosed their HIV+ve status since the first AIDS case was diagnosed in 1985 (Zuyderduin, 2001:20)

The need for safety and freedom from fear
U n less PLWAH feel safe in th eir communities, they are unlikely to disclose their HIV+ve status for fear o f ostracism due to stigmatisation.

Risks of disclosure
Unmet safety needs were expressed as fear o f physical and sexual abuses after disclosure and 18 PLWAH (16%) stated that they could not afford a lawyer but required legal assistance in connection with alleged rape/sexual assault cases.
The needs theory o f Maslow was helpful in understanding that both keeping the HIV+ve diagnosis a secret and telling other people were possible sources of tensions and anxieties.Where feelings o f safety were affected this possibly p revented h ig h er-le v el needs from emerging.
Most PLWAH were not talking about their HIV+ve diagnosis; 64 PLWAH (56%) (N=l 16) did not feel safe and reported that most people, including those who knew them well, were completely unaware of their HIV+ve diagnosis.Their HIV+ve status was their secret.They were "in".O f those 64 PLWAH who had disclosed to fewer than 5 people, 29% were men (n=64) and 71 % were women (n=64).
Maslow expressed his concern about keeping quiet about issues (as in not expressing or releasing emotions) and encouraged people to discuss these issues (Maslow, 1996c:41).This author cautioned that w hat is not used will waste away and cautioned about physical and em otional "atrophy" due to, for example, unused intelligence or unmet love needs.Maslow argued that people need to express them selves and seek re le ases to p re v e n t ab n o rm a lities.Maslow advised people to use all their physical and m ental capabilities to achieve discharge, gratification and perfection (Maslow, 1996c:41).
Not all PLWAH were secretive about their HIV+ve diagnosis.At the other end of the spectrum, 8 PLWAH (7%) (N=116) reported their HIV+ve status to be public knowledge.They had disclosed to over 30 people and w ere "o u t" .On this continuum o f disclosure, 40 PLWAH (35%) were in between these two groups, "half in and half out", and had disclosed to between 6 and 29 people.Four PLWAH did not answer this question To measure the levels o f stigma and discrimination, the PLWAH were asked about violations o f their dignity, the number o f times they had been insulted because o f their HIV+ve status, and Therefore, Maslow argued, the good for other people must be invoked, as well as the good for oneself, since there is synergy between the individual good and the good o f society (Maslow, 1996b:31-32).
M aslo w 's th eo ry a ssiste d in u nderstanding the im portan ce o f a holistic approach to the care o f PLWAH.The political climate in Botswana has been conducive to mobilising everybody, both those who know that they are HIV positive and the rest o f the population.Since his election in 1998, President Mogae has led Botswana's battle against HIV and AIDS, making an effort to break the silence and denial surrounding HIV and AIDS in Botswana (Mogae, 2000:13).Maslow supported the notion that it was important to lead by example and that other people generally mirror one's own personality, and emphasised that "the good world helps to permit the good person to be good" (Maslow, 1996b:35).

Rape and HIV transmission
This survey identified eight single women who were tested for HIV and diagnosed HIV+ve after having being raped.Reports about rape in Botswana by a local NGO, W om en A g a in st R ape in M aun, su g g ested th at -d esp ite a m arked increase in the number o f reported rape cases -conviction rates have remained extrem ely low (U N DP & G ovt, o f Botswana, 2000:31).O f the eight HIV+ve women raped, five indicated that if they were able to get a lawyer free o f charge they would use legal assistance in dealing with this situation.Police and court reco rd s show th at tw o -fifth s o f B otsw ana's rape cases involve girls younger than 16 years, but data on the relationship between abuse and HIV transmission through rape are largely absent (UNDP & Govt, o f Botswana, 2000:31).None o f the women raped were on ARVs.Four o f the women were helped by their families to cope; three o f the w om en w ere supported by an o th er PLWAH; and one woman was supported by a nurse.Five o f the women had told their parents about their HIV+ve status and had received supportive counselling during the previous three months.All eight these PLWAH would like to be visited at home by another PLWAH if that were possible.One o f these wom en reported that she went public to tell others what had happened to her.

The need for love and belongingness
Love and belongingness were identified as th ird -le v e l needs in M a slo w 's Hierarchy o f Human Needs Theory (see figure 1).Nearly 70% o f the 116 PLWAH reported that they were not in an intimate relationship.O f those who were, 18 PLWAH (16% ) re p o rted th at th eir partners were also HIV+ve.
N early a third o f the PLWAH had experienced multiple deaths within their families during the year preceding the survey.O f the 112 PLWAH who had done so, 27% had lost three or more close family members during 1999.Only four PLWAH reported that they had not lost close family members.This might have contributed to additional tensions due to unresolved grieving processes.Supportive counselling was received three m onths preceding the completion o f the questionnaire by 71 PLWAH (61 %) (N= 116), and 57 PLWAH (47%) had access to a support group.It was very important for the 58 fem a le PLWAH (75%) (n=77) across all age groups to be in an all-female support group where they could discuss their problem s and concerns w ith peers.However, despite availability o f peer su p p o rt, th ere w as ev id en ce th at Botswana was indeed experiencing a crisis and that the death toll was rising (Mbogori, 1998:2;Mogae, 2000:13).
Nearly half o f all the PLWAH surveyed (48%) had not told their parents about their HIV+ve status.Seventeen PLWAH (15%) explained that they did not tell their parents because they were frightened of how their elderly parents would react.The reason stated most often was that the PLWAH feared they w o u ld be rejected by their family.These PLWAH

Monthly income in Botswana Pula
decided to avoid ostracism or stigmatism, even when they forfeited appropriate psychosocial support as a consequence o f these actions.
Many o f the PLWAH who had anticipated n eg a tiv e re a c tio n s by th o se they informed about their HIV status actually found acceptance.The first persons of choice who were told o f their HIV+ve status were: another PLWAH (25%); the spouse or boy/girlfriend (23%) or their mother (21 %).When they revealed their HIV+ve diagnoses to another PLWAH, th e ir p a rtn e r or th e ir m other, an encouraging 64% reacted to the news in a supportive manner, according to the PLWAH.Sixty PLWAH (52%; n=116) informed the first person within a week after the HIV+ve diagnosis had been made.Twelve PLWAH (37%; n=33) took longer than three months to disclose and had not told their sex partner during the preceding year that they were HIV+ve.However, 17 PLWAH (15%; n= 116) took longer than six months before telling that first person (see figure 5).
Peer support was important in promoting disclosure; o f the 17 PLWAH who had not told anybody about the HIV+ve status for more than six months, 70% eventually told other PLWAH about their HIV+ve diagnosis.Thirteen PLWAH (76%) (n=l 7) who had kept their HIV+ve status a secret for a longer time reported th at o th er PLWAH w ere the m ost important people for them to help them cope with the HIV+ve diagnosis.
However Having respect for each other in caring relationships has been identified as a precondition for effectiveness in helping relationships in general and between ca reg iv ers and H IV +ve p eople in particular (Faugier& Sargeant, 1997:222-230;Powell-Cope, 1994:324-330;Roberts & Krouse, 1990:30-36).
B ecause o f the fact th at HIV is predom inantly sexually transm itted, guaranteeing confidentiality has been the foundation o f all HIV prevention and health promotion strategies that aimed at lasting behavioural change, but has been subject to debate, since the ethical dilemmas associated with the rights and duties o f PLWAH were not always well understood (Gibney, D iC lem ente & Vermund , 1999:88;Hayter, 1997Hayter, :1162Hayter, -1166)).In 1999, M ann (1 9 9 9 :2 1 7 ) postulated that participation in HIV testin g and co u n se llin g a c tiv itie s increased when HIV testing facilities instituted anonymous testing.However, in B otsw ana uptake o f HIV testing remains low (Bara, 2002:1-9;Donnelly, 2003:1-3;Talbot, Kenyon, Halabi, Moeti, More & Binkin, 2000:1156-1163).
Informed consent is the basis for the trusting relationship between health care providers and patients.Studies done in the USA and the UK during the last part of the 1990s provided examples o f the negative effects o f forced disclosure: people losing their jobs and their houses and being ostracised by their family and friends (Ingram & Hutchinson 1999:93;Kimberley, Serovich & Greene, 1995:316;Mann et al., 1999:17).Forced disclosure was even more dangerous for women, who might have to deal with domestic violence and abandonment by their father or male partner or husband (UNDP & G ovt o f B otsw ana, 2 0 0 0 :2 8 ).N evertheless, in B otsw ana, doctorpatient confidentiality is not absolute and disclosure may be justified in certain circum stances.Botswana applies the principle o f "shared confidentiality" .This principle implies that doctors in Botswana shall inform those who need to know o f the medical condition o f the patient before appropriate health and social welfare care can be provided.The people who need to know include • caregivers • all persons who come into closc regular contact, and • all those living with the HIV+ve person (MOH, 1997:62).
In the Second Medium Term Plan on HIV and A ID S, 1997-2002, a n eed for clarification o f Botswana's principle of "shared confidentiality" was identified.Not much is known about how doctors in Botswana deal with the demands of the shared confidentiality principle placed on them in their daily practice (MOH, 1997:62;MOH, 1998:12).If patients in Botswana were told about situations in which confidentiality could be breached, the prevailing attitude that the m edical profession could not be trusted, as reported by 21 % o f the 116 PLWAH in the 2000 survey, might not occur.
In Botswana, specialised care was offered to HIV+ve women at the local clinics.
T his program m e aim ed to p rev en t transmission o f HIV from the HIV+ve mother to child during pregnancy, birth or through breastfeeding by giving the HIV+ve mother short-term therapy with one type of ARV (Hankins, 2000:57-62).However, 53 PLWAH (46%) (N=l 16) in the survey, aware o f low uptake o f this service in Botswana, reportedly thought that few HIV+ve w om en agreed to participate in the PMTCT programme and take AZT (ARV drug, m onotherapy) during pregnancy because the HIV+ve wom en feared disclosure w hen not breastfeeding their babies.An alternative reason could be, according to 32 PLWAH (28% ), the lack o f understanding o f prevention of vertical transmission of HIV by pregnant women.

Tuberculosis
Tuberculosis and HIV and AIDS are often referred to as the twin epidemics.A post mortem study on those who died o f AIDS in 1997/1998 indicated that about 44% of adults who died of AIDS also had TB ( , 2001:1042-1047).In 1995 it was reported that the true picture o f TB/HIV co-infection was not known, but four years later, in 1999, it was estimated that 50-80% of Botswana's TB patients were co-infected with HIV (M OH, 1995:13; UNDP & G ovt o f B otsw ana 1999:20-21).B o tsw an a implemented a TB prevention programme for HIV+ve people, encouraging PLWAH to prevent latent TB from becoming an acute infection when the immune system is weakened started in 1999 (BOTUSA 1999:26;Ridzon & M ayanja-K izza, 2002:382) To prevent TB, 21 PLWAH (18%) were on a course o f Isoniazid tablets that they had to take daily (at home) for six months.The situation is increasingly serious as Botswana in 2002 reported one o f the highest TB infection rates in the world, with about one in every 200 citizens o f Botswana having active TB (Talbot etal., 2002:311).
In the 2000 survey 33 PLWAH (29%) (12 men and 21 women) reported that they were suffering from TB and were on Direct Observed Treatment Strategy (DOTS), taking their medications daily to cure their TB infections.Two-thirds o f the PLWAH with active TB were satisfied with the support received from the government health care system and 60% always told their nurses that they were HIV+ve.An association between poverty, resulting in malnutrition and overcrowding, and TB w as id e n tifie d in th e N ational TB programme of Botswana (MOH, 1995:8).
In the 2000 survey, incomes and TB were linked, since 64% o f the 33 PLWAH with TB belonged to the very low income group, making it difficult for these TB sufferers to eat proper meals (see figure 6).(Zuyderduin, 2004:8-10).

Depression, tiredness and anxiety about health
Thirteen PLWAH, four men and nine women, were very worried about their health, felt very depressed, had been very tense and had had no energy during the month preceding the survey.O f these 13 PLWAH in poor health, three PLWAH (23%; n=13) were public about their HIV+ve status and had disclosed to over 30 people.

Self-actualisation and transcendence
Despite the deficiencies in the fulfilment o f safety, belonging and esteem needs, positive attitudes were reported by the majority, over 73%, o f the 116 PLWAH.
T hey did no t b eliev e the H IV +ve diagnosis was a death sentence and they were optimistic about the future and expressed their will to live.The entire model of humanistic psychology and selfactualisation rests on the assumption that the person w ants to live (M aslow , 1996b:26).The traumatic impact of living with AIDS has usually been the focus in studies of PLWAH.However, from 1994 onwards, evidence was beginning to suggest that it was possible that PLWAH could lead meaningful and productive lives (C o llin s, K anouse, G iffo rd , Senterfitt, Schuster, McCaffrey, Shapiro & W enger, 2001:351-360;C ow ard, 1994:331-336;M cW illiam , Stewart, Brown-Belle, Desai & Coderre, 1996:1-15;Mellors, Erlen, Coontz & Lucke, 2001:235-246;M etcalfe et a l., 1998:30-34;Schwartzberg, 1994:593-602).
In a qualitative study o f five PLWAH, Mellors et al. (2001:236)  Maslow demonstrated that emotionally healthy persons showed that when they behaved unselfishly, this behaviour tended to be a phenomenon o f personal abundance stemming from relative basic gratification (Maslow, 1996e: 113).This might be one possible reason why 35 PLWAH (30%) in the survey reported that they were willing to be trained as buddies.Not all PLWAH were prepared to care for and support others w ith in a buddy system; 19 PLWAH (16%) (n= 116) would be buddies if paid, and 50 PLWAH (43%) were unsure as to wether or not they wanted to be trained as buddies.
Maslow argued that as we are bom we have an intrinsic need to experience the highest values such beauty, truth justice and so on.T hese hig h er needs are biologically rooted just as are our lower needs for food and safety (Maslow, 1996d:97).The notion that people have the ability and motivation to improve during their lifetime, and that society is im p ro v ab le, w as im p o rtan t in understanding some o f the findings of the survey.M aslow postulated that meeting higher values not only prevents c e rtain form s o f illn e sse s such as neurosis, hopelessness and the like, but motivates people to not merely accept the world as it is but strive to better their world (Maslow, 1996d:96-98).

Conclusion
This survey indicated that there were opportunities for sustaining, scaling up and improving HIV and AIDS care and support for PLWAH.M aslow's needs theory was valuable in explaining how higher needs emerge when lower needs are gratified.The theory suggested that it was not only possible to strive for growth and higher values but that doing so w ould actu a lly help others and oneself.

Figure 1
Figure 1 Deficit and Being needs in terms of Maslow's Hierarchy of Needs Theory

Figure2
Figure2 Respondents' ages and gender Figure 3 Reasons for being tested for HIV tested for HIV as part o f p re-em p lo y m en t testing or for insurance purposes.Most o f the research participants (43%) were tested because they fell ill and th eir d o cto rs w anted to know whether they were HIV+ve.Seventeen PLWAH (15% ) w ere tested du rin g pregnancy.As many as 28% o f the 116 PLWAH (10 men and 22 women), went for voluntary counselling and testing (VCT).In the early 2000s reportedly about a third o f all adults in Botswana lived with HIV, yet only a fraction presented for VCT (Donnelly 2003:1-3; UNDP & Govt, o f Botswana 2000:37).

Figure 5
Figure 5 Time needed to voluntarily disclose HIV+ve status for the first time to person of choice

Figure
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. Some of those PLWAH participated in this survey.