"So you have to let go of fear, and not "So you have to let go of fear, and not have a painful heart": South African have a painful heart": South African HIV+ men's experiences of coming to HIV+ men's experiences of coming to terms with their diagnosisterms with their diagnosis

Insights from a Structural Intervention study Insights from a Structural Intervention study to Integrate Reproductive Health into HIV to Integrate Reproductive Health into HIV CareCare

Di Cooper

Women’s Health Research Unit

School of Public Health & Family Medicine

University of Cape Town

December 2008December 2008

Study TeamStudy Team

HIV Center, ColumbiaUCT SOPH & Family Med

Joanne Mantell Theresa ExnerExner Susie Hoffman Tonya Taylor

Zena Stein

Diane Cooper Sheila Cishe Sumaya Mall Jennifer Moodley

Chelsea Morroni Landon Myer Ntobeko Nywagi

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Metro Cape Town DOH

Western Cape DOHWestern Cape DOH Keith Cloete Virginia Zweigenthal

Karen Jennings Pren Naidoo

BackgroundBackground

South Africa one of the highest rates of HIV infection in world – 11% in overall population & 28% in ANC women in 2007 (NDOH, 2007)

Also high rate of unplanned (36%) or unwanted (17%) pregnancy despite relatively high rate of contraceptive prevalence (64% - women repro age)(SADHS, ‘03)

Epidemic most severe among individuals of reproductive age - sizeable population early in their reproductive yrs already HIV+

Addressing HIV+ women & men’s reproductive health needs espec. important

BackgroundBackground (contin.)(contin.)

Availability of ARVs has begun normalizing PLWHA’s lives – likely to increase desires for children

Little focus particularly on men living with HIV in sub-Saharan Africa’s fertility desires, contraceptive practices & needs

Prevalence of desire for parenthood among

PLWH 28-50% in developing countries

BackgroundBackground (contin.)(contin.)

Prior research findingsPrior research findings

Approx. equal proportions of HIV+ women & men wanted biological and did not want (more) children (n=459)

Diversity in intentions influenced by: Individual desires and concerns Social expectations Provider attitudes Medical interventions (PMTCT, ART) HIV-related factors

Contraceptive access Contraceptive access

92% of women currently in sexual relationship, reported using contraceptive method (primary condoms)

However, 28% women reported unable to access contraceptive method during visit for HIV care/rx & 35% unsure if could obtain it during visit

Very few (29%) had disclosed HIV+ status to health care provider outside of HIV care & rx setting

Pregnancies post-HIV diagnosisPregnancies post-HIV diagnosis

19% (n=54) of women reported had been pregnant since knowing were HIV+ - nearly 2/3 unintended/unplanned

90% of women & 91% of men had never heard of EC; only 6% & 2% respectively reported that health care provider had ever discussed EC

Table: Clients’ discussion of fertilityTable: Clients’ discussion of fertility intentionsintentions with health care providerswith health care providers women women menmen

Yes No Yes No

Have discussed with a doctor

22% 78 % 14% 86%

Have discussed with a counselor

12% 88 % 10% 90%

Has discussed with a nurse

5% 95% 5% 95%

Providers,Policy makers: Providers,Policy makers: gaps to address gaps to address

Absence of policy or guidelines

Insufficient training in contraception & HIV (concerns – effectiveness, drug interactions) & in EC & for some providers - effects of pregnancy on HIV progression etc.

Need for values clarification training

Difficult to meet client RH health needs comprehensively as no integration of RH care into HIV care & treatment

Intervention study Intervention study overviewoverview

41/2 yr collaborative study between UCT& HIV center at Columbia U being conducted at 4 urban public sector health centres in Cape Town

In phases 1 & 2 conducting in-depth qualitative interviews, using interview guide, with cohort of HIV+ women and men in HIV care, initially not on ARVs

OverviewOverview (contin.)(contin.)

Three interviews with HIV+ men & women in HIV care: baseline, 3 mths, 6-9 mths; 15-18 mths

Formative research used to inform development of structural intervention to counsel HIV+ clients about SRH issues & effect improved integration of SRH services with HIV care

Proposed enhanced Proposed enhanced Intervention vs. Standard of Intervention vs. Standard of CareCare PROPOSED ENHANCEDPROPOSED ENHANCED On site non-barrier

contraception on site On-site free male &

female condoms Study SRH training,

counseling & family planning

SRH information available in waiting rooms

Study systematic, technical support

STANDARD OF CARESTANDARD OF CARE No non-barrier of methods available in HIV care Free male condoms only No study SRH training, counseling & family planning No study systematic SRH info’ provision/ promotion No study systematic, ongoing technical support

Participants: client cohortParticipants: client cohort

At baseline 27 HIV+ men & 30 women recruited soon after entry into HIV care

Eligibility criteria:18 yrs or >;cognitive ability to participate in interview; willingness to be audio-taped

Study staff approached every third client seated in the waiting area

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Study objectives and procedures explained & informed consent initiated

Interviews conducted in private in English, or Xhosa

2nd interview - 18 men & 22 women followed up

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Focus of this Focus of this presentationpresentation

Explore how men living with HIV react to their diagnosis

Factors facilitating and hampering coping with life post-HIV diagnosis

Examining changes over time

Addressing counselling & service needs 16

Topics for interviewTopics for interview Impact of HIVDisclosure of HIV

status Impact of HIV on

sex livesSexual risk

decisionsSources of support

(or lack thereof) in their lives

Desire for parenthoodApproaches &

attitudes to safer conception in context of HIV

Attitudes to integrating components of RH into routine HIV care

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Characteristics of baseline sample Characteristics of baseline sample

CharacteristicCharacteristic WomenWomen (n=37)n=37) MenMen (n=27)(n=27)

Mean Age (SD) 33 yrs 37

Education 10.4 years 9 years

Employment 69% unemployed 42% unemployed

Main Sexual Partner Type of Partnership

76% yes35% boyfriend (not live

in)

84% Yes58% casual relationship

HIV Status of Partner 41% unknown 61% were HIV+

Reported current condom Use

72% all of time 92% all of time

Current Contraceptive Use & Type

62% yes 69% MC

53% yes 68% MC

For some recurring theme in baseline & follow up: shock/disbelief; stress & anxiety; thoughts about death & fears of dying: “ I don’t feel pain but at a certain time something just arrives “hey my days are numbered” and I look at her [his partner] also ..her days are numbered; we will meet up there in heaven. That is the only thing I am thinking about... “ (P26, baseline, 37 yrs, married)

Others felt resignation or that diagnosis not unexpected

Findings: HIV+ menFindings: HIV+ men

Reactions to diagnosis Reactions to diagnosis

For most feelings moved to greater acceptance with time:

HIV widespread – many others have it

Can live healthily

Availability of ARV rx can bring hope

Greater acceptance over time Greater acceptance over time

Two key concerns: Inability to work/earn income & support family

espec. in a patriarchal society:

“Like as I am someone who is unemployed I depend on the woman, do you see, I don’t know what I can say because I am young [for a pension]...” (P26,37 yrs, married)

Who will provide care when sick:

“ I mean I worry about who will care for me..because my family is scattered.. concerns are about whether and how these people who love me are going to treat me when I am ill.” (P23, 34 yrs, stable partner)

..but face anxiety re: ..but face anxiety re: practical issuespractical issues

Often a ‘process’, taking time Little widespread disclosure beyond a few trusted

individuals (still felt HIV stigmatised) Mostly to wives/girlfriends & selected family members

e.g. brother, sister, cousin; sometimes selected friends

Sometimes to parents (can be particularly difficult & ‘painful’)

Fear of disclosure to others: stigma– sometimes thinks others ‘know’ despite no disclosure social avoidance

DisclosureDisclosure

To whom:To whom:

Mostly saw reactions to disclosure as supportive, but were exceptions

Experienced tangible benefits from disclosure:

Support & love/kindness: “ When I explained to her she said “Let me also go for a test, so that we can see if our health is the same” – she didn’t just throw me away…” (P26, 37 yrs, married follow up)

Can mutually assist each other in reducing sexual risk

Disclosure reactionsDisclosure reactions

Some - no change, for others reduced libido; difficulties in sexual performance - often came up spontaneously; saw it as due to HIV: “ I am not feeling good about manhood.. I am losing the feelings….I” (HIV+ man, baseline)

“ It has affected it [sex life]. I mean I am afraid of sex now. Yes there is a change..I don’t enjoy it anymore now” (P23, 34 yrs, stable partner, follow up interview)

• Some men reported erectile dysfunction problems

Sexual desire & functioningSexual desire & functioning

At baseline most reported that they insisted on condom use - at follow-up, greater willingness to acknowledge difficulties with consistent condom use:

“..I did try to use a condom, I can’t use it because I can’t feel the woman..in the way I am used to [feeling] her [and] she agreed”.(P26,37yrs, married, follow up)

“ ..when it is cold I don’t use one...It’s that thing of having to be all wrapped up & warm & then you have to go & get one..” (P23, 34 yrs, stable partner, follow up)

Sexual risk decision-making Sexual risk decision-making

Various sources of support - partners, family, friends & peer groups:

“I did get some work.. but I got really weak… [she, my wife says] “Stop honey, don’t kill yourself over there, you are going to kill yourself – you are sick, you have no strength.” (P 26, 37yrs, married)

“ My friends can accompany me .. to the clinic..they look after me with great care now.” (P23, 34 yrs, stable partner)

“Since joining and attending the support groups…I have found things OK…I feel when I am with them that I am a real person.” (P12, 28 yrs,married)

Sources of support in Sources of support in copingcoping

Economic assistance important (e.g grants)

ARV rx:“ Again I feel strong. Now I have told myself there is nothing that I will not be able to achieve..Ever since I got the ARV’s, I have been right.” (P23)

However, some reported little or no support

Sources of support Sources of support (contin.)(contin.)

Keep physically well & fit:

“I stay healthy and also.. stop drinking, limit myself in tobacco,.. I eat healthy things and exercise is.. important because I was once a boxer and.. now a trainer-boxer because I can’t go to the ring because ..we bleed,.. so I keep my body fit.” (P8, 29yrs, casual relationship, baseline)

‘Little things in life’ (e.g. birthday; obtaining a

driver’s licence) provide meaning & pleasure

Coping positively Coping positively

Physical weakness/ ill healthMental health issues: anxiety & depression: “I can’t do anything. The time is over... There is

just one thing I think of and that is to go home and live with mom and dad. ..I want to go home to the rural areas again ..[but]..I don’t think I will be able to do those things because I don’t have strength.. It is better if I just step back/withdraw.” (P26, 37 yrs, married, follow up)

Challenges to copingChallenges to coping

Alcohol use: “The medicine that I use is alcohol - I can’t lie…I get worried when I am just sitting by myself..you see I cool myself down with alcohol.” (P26, 37 yrs, married, follow up)

Inability to work & earn income;follow life plans – e.g. concerns that will not be able to have (more) children came up spontaneously from some men

Interview sometimes influenced thinking on having children

Challenges to coping Challenges to coping (contin.)(contin.)

Reducing fear & anxiety: ‘Letting go of fear & not having a painful heart’:“I had to accept myself because the thing that was making me ill was thinking about just this one thing so you will never get well.. (P12, 28 yrs,married, follow up)

Openness about status:“…how can I start to live if I am someone who cannot be open about himself..then I just got to that feeling of peace – do you understand? “(P12, 28 yrs,married, follow up)

Advice to others: living Advice to others: living positivelypositively

Providing clients with space to raise &

probing re: Sexual desire & functioning problems Feelings of depression/mental health problems Discussing life plans in terms of having or not

having children Assistance with economic/job problems –

grants

Addressing counselling & Addressing counselling & service issuesservice issues

Exploring with client what/who helps them & building on these opportunities/supportive people

Take ‘cues’ from what works for those coping better but also tailoring counselling to individual & changes in life over time

Service provision within HIV care or referrals

Addressing counselling & Addressing counselling & service issues service issues (contin.)(contin.)

AcknowledgementsAcknowledgements

Study funded by NIMH R01 MH 078770 (Joanne E. Mantell, PhD, PI; Diane Cooper, Co-PI and a Center Grant NIMH P30 MH43520 (Anke A. Ehrhardt, PhD, PI) Grateful to the cohort of HIV+ participants who shared personal stories with us & to DOH in Western Cape & City of Cape Town

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