"So you have to let go of fear, "So you have to let go of fear, and not have a painful heart": and not have a painful heart": South African HIV+ men's South African HIV+ men's experiences of coming to terms experiences of coming to terms with their diagnosis with their diagnosis Insights from a Structural Insights from a Structural Intervention study to Integrate Intervention study to Integrate Reproductive Health into HIV Care Reproductive Health into HIV Care Di Cooper Women’s Health Research Unit School of Public Health & Family Medicine University of Cape Town
34
Embed
"So you have to let go of fear, and not have a painful heart": South African HIV+ men's experiences of coming to terms with their diagnosis Insights from.
This document is posted to help you gain knowledge. Please leave a comment to let me know what you think about it! Share it to your friends and learn new things together.
Transcript
"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
2
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
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
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