managing&hiv&in&children;& maintaining&the&childs’&...

Managing HIV in Children; Maintaining the Childs’

Wellbeing The Mildmay Uganda Experience

Interna'onal Scien'fic Workshop on "Neglected Tropical Diseases: Female Genital Schistosomiasis & its impact on HIV/AIDS

January 28 – 29, 2015

Dr. Barbara Namata Mukasa

HIV in Children <15 years (UNAIDS, 2013)

•  3.2M CLHIV (91% in SSA) •  240,000 newly infected with HIV •  24% of eligible children received ART •  190,000 children died of AIDS-‐related illnesses

•  HIV no. one killer of adolescents in Africa

•  Adolescents only age-‐category for which HIV deaths increased last year

Burden of HIV/AIDS in Children <15 yrs (Uganda HIV Country Progress Report 2013)

3

HIV Prevalence by Region

Country Popula'on

~35M

PLHIV 1,561,489 (193,500 Children )

New Infec'ons

137,000 (16,000 children, 41/d)

On ART 588,039 (44,000 Children)

*23% of those eligible

Overall: 7.3%

What must be done to maintain the Childs Well-‐being in the context of HIV?

Access to HIV tes[ng = entry point Infants born to WLHIV should be tested for HIV within 2 months, using a virological test (WHO, 2013). -‐ Only 42% of such infants were tested during 2013 **Need for PoC tes?ng to avoid the high rates of LTFU

Access to ARVs & Adherence to ART

q Access to ART for children nearly ½ of access for adults

q Child friendly forms of medica'on not always available – syrups, tablets, powders, capsules

q Longer dura'on of ART – average 20 years longer than adults on treatment

Note: Complexity of adherence to ART while dealing with puberty.

Loss-‐to-‐follow-‐up (LTFU)

18 months a^er ini[a[on of ART in children;

q 5.7% had died q 12.3% LTFU q 8.6% transferred to other clinics.

Valeriane Leroy et al (2013)

Key: Children rely on their caregivers to access to healthcare services. Contribu'ng Factors – ‘’lack of caregiver contact informa'on, s'gma & counselling challenges, the burden on pa'ents to return for results, & weak follow-‐up within clinics."

1472 1431 1150

928 822

3% 20% 19%

11%

0 200 400 600 800

1000 1200 1400 1600

Tested HIV+

Results returned to health facility

Care giver

received results

Enrolled in HIV care

Ini[ated on ART

UGANDA eMTCT Programme 2013 (43% LTFU)

Other Issues

•  The paradox in the need to reach more children vs the costs of ARVs in the face of less children being infected (** the business case for the drug companies)

•  Managing Disclosure (MUg Experience)

– When is the right 'me to disclose to the child? **Delays due to fear of blame, s'gma “Mum should have informed me before she passed away or dad should have told me and explained that. ..daughter look here, you are sick and therefore should take the drugs to prolong life” (MUg, FGD female par?cipant 16yrs) “But me I just guessed it was my father who had brought it because he was misbehaving ……… but s?ll my father was the problem, he was having other women and even when he learnt of it that he had got the disease, he started geWng treatment with his other wives and not informing my mother”(FGD female Par?cipant aged 15yrs.) -‐ Who else should know the child’s HIV status? “We don’t tell our friends about our sero status because they can go on telling each and every one including our enemies” (FGD male par?cipant aged 14yrs)

A faith-based, NGO; Opened in 1998 Vision: Communities equipped to effectively respond to HIV

& other priority health Issues Mission: “Modelling quality & Sustainable Prevention, Care

and Treatment of HIV & other health priorities, using a family centred approach; together with Training, Education & Research.”

Mildmay Uganda – Our Response

Districts with supported MUg Heath Systems Strengthening Ac'vi'es

Districts with MUg supported CaCx screening services

Projected Popula'on Buikwe 418,200 Bukomansimbi 152,400 Butambala 98,200 Gomba 150,700 Kalungu 175,600 Luwero 429,000 Lwengo 264,900 Lyantonde 78,600 Masaka 249,200 Mityana 306,700 Mpigi 212,400 Mubende 588,300 Nakaseke 184,800 Nakasongola 153,200 Ssembabule 215,200 Wakiso 1,315.000

MUg Supported Districts

MUg CORE ACTIVITIES

EDUCATION & TRAINING

Short & Long courses; curriculum development;

clinical & non-clinical Placements Programmes

DISTRICT HEALTH SYSTEMS STRENGTHENING:

HIV PREVENTION, CARE &

TREATMENT

RESEARCH

& STRATEGIC INFORMATION

Paediatric, Adolescent & Adult care; Facility & community –

based systems; In- & out-patient care

GRANTS MANAGEMENT- Subcontracts

A family-‐centered, mul[disciplinary, Integrated approach to HIV & AIDS Care How do we do it? = we simply keep following the needs of our Clients

Our Experiences with CLHIV

HIV affects all dimensions of life -‐ physical, psychological, social & spiritual

1. Unmet basic needs in order of priority – health, food, educa'on, shelter protec'on/safety

(Priority Needs Assessment, CLHIV central region Uganda) ‘’It is not easy for me to take my medica?on if I have not had a meal. The medicine makes me sick but I have to take it. If I don’t have food, I rather stay without taking my medicine. In fact the days I don’t have anything to eat at lunch ?me, I don’t take my medicine”, (10-‐yr old boy, Mityana).

2. Love & Care by primary care giver, posi've child-‐caregiver interac'on ac'vi'es, encouragement, affirma'on, unfulfilled need for a sense of belonging in the family 'Some of my uncles keep on telling me that when my grandmother dies, I have to leave the home.‘

(12 yr old, male, Masaka)

Our Experiences with CLHIV contd;

3. Exposure to s[gma & discrimina[on; unequal sharing of resources, neglect, bullying, social isola'on & rejec'on by family & the community. "I thought I was a nobody. But, now I think I'm somebody in my life. This woman is a good Samaritan, she took me when my family lef me. I will never forget her, ever’’

(13 yr old female, Wakiso)


4. Inability to par[cipate in the management of ones own health care

‘They talk about you as if you are not there. My aunt loves me but she keeps discussing my drugs with people and they agree what to do. My problem is the yellow tablet is very biger, I cannot take it whatever they do’. (14 yr old female, Wakiso)


Key Principles to Child Care

1.   Child Rights Approach – includes; right to confiden'ality, dignity & respect for each child as a unique human being; gender sensi'vity

2.   Protec[on from Harm -‐ Proac've vs reac'onary preven'on 3.   Child Par[cipa[on -‐ while promo'ng the Childs' best interests

4.   Family-‐based Care -‐ Culturally & environmentally appropriate

5.   Developmental Perspec[ve -‐ Age & developmentally appropriate services – con'nuous evalua'on

6.   Sustainability of Services – explore & develop actual and poten'al resources in the child’s environment; Inter-‐sectoral collabora'on

MUg provides both facility & community-‐based heath services •  >83,000 PLHIV in care/7000

children below 15 yrs •  >65,000 PLHIV on ART/6595

children below 15 yrs •  10-‐14% of those in care are

adolescents

MUg Services Contd; o  > 60,000 pregnant women

counselled & tested for HIV annually

o  > 4000 new HIV+ pregnant women iden'fied & started on ARVs for eMTCT every year

o  > 2000+ HIV exposed infants iden'fied annually

o  >20,000 OVC reached annually with core services

Rou[ne screening for Cervical Cancer & Cryotherapy for pre-‐cancerous lesions > 3000 women screened & 35% treated for pre-‐CaCX lesions Up to 25 HIV+ adolescents screened for CaCx every month (4% treated for cervici's, 8% treated for STIs)

Multi-disciplinary Teams for Holistic Child Care Services

Integrated Services for children at MUg

–  Rou[ne Medical Consulta[ons –  Specialist Care – eye, dental, psychiatry –  Counselling & Play Therapy –  Physiotherapy –  Occupa[onal therapy –  Nutri[onal educa[on & rehabilita[on –  Pastoral care services by a mul[-‐denomina[onal team –  Sexual & Reproduc[ve health services

•  Earlier program design focused on either pediatric or adult care -‐ did not adequately address the needs of this growing segment of the popula'on

•  Big assump[on -‐ HIV-‐infected young people remain asexual Counseling & other support for young people at Mildmay before 2007 largely excluded SRH issues or focused on abs'nence

MUg Adolescent Programme Context

MUg – ASRH Programme

•  RH services expanded as part of rou'ne care at Mildmay Uganda in 2006

•  In 2007, 23 young people had an unplanned pregnancy

•  None had disclosed their HIV+ status to their sexual partners or their pregnancy to care givers!!!

1.   Our Genera[on Mildmay Adolescent Club (OGMAC 10-‐24 yrs) Safe youth Club (SYC-‐ 15-‐ 24 yrs)

2.   Posi[ve Speakers Club (PSC 10-‐24 yrs) 1.  Noah’s Ark Choir 2.  Unique Stars

3.   Kisaakye Youth Centre (KYC – 10-‐24 yrs)

ASRH services at Mildmay Uganda

Established in 2009 for greater focus on ASRH Project Objec[ves: 1. Empower young PLHIV to live posi'vely with their iden'ty & balance the rights and responsibili'es of vital aspects of their lives, including disclosure of their HIV status to significant others.

2. Enhance the capacity of young PLHIV to make healthy SRH choices

Kisaakye Youth Centre (KYC)

Key Program Ac[vi[es -‐ KYC

q Trained HCWs -‐ Adolescent sexual rights & responsibili?es, life skills, understanding adolescents & communica?ng sexuality issues to adolescent, among others.

q Trained 100 peer counselors, who subsequently trained 63 adolescent peer educators (posi[ve speakers) across two age groups (10-‐14 and 15-‐24 years).

Services Offered in KYC

•  Toll free Call-‐in & call-‐out services •  Reading materials •  Educa've Radio/Video programs •  Edutainment •  Counseling •  FP services, CaCx Screening, eMTCT **Referral for other services as appropriate KEY: Con[nuous Needs Assessment-‐ exit self-‐administered ques[onnaire

Barriers & Challenges

•  S[gma –balancing posi've living against sexual needs is a real challenge for this age group.

*Note. Some peer counselors are not necessarily willing to openly disclose their HIV status

•  School terms interrupt peer-‐to-‐peer follow up •  Conflic[ng Parent/Carer & Peer Educator/Counselor desires &/or expecta[ons e.g. disclosure of HIV status, ‘hanging out’ with seemingly ‘difficult peers’ in the community, etc.

•  Poor access to support groups and other services by those from ‘well-‐to-‐do’ families

Peer Educator

‘’ It used not to be like this…, these days we are many young people who come here alone, we feel free and can talk to our friends who are like us -‐-‐-‐ HIV posi've is not easy… but here we share. When we share, others who are s'll fearing believe us. They believe us more than the doctors, we encourage them to stay and they keep coming’’ female 19, KYC-‐MUg

YEAR

Total No. in Care 10-24 yrs

Report Sexual Activity

Report disclosure to sexual partner

No. of Pregnancies

No. Accessing

FP CaCx

Screening PMTCT

2007 1356 18% 40% 16 0 Service not

in place No data

2008 1425 20% 51% 22 12 Service not

in place No data

2009 1694 16% 71% 9 13 2 No data

2010 1572 14% 95% 9 34 36 No data

2011 1534 14% 91% 27 47 47 23

Data from KYC

Training & Educa[on

•  MUg accredited by the Na[onal Council of Educa[on as an ins[tu[on of Higher learning

•  Recently accredited by MoES as a Medical Laboratory Training School

•  Programmes -‐ Placements, short & academic courses (modular work-‐based)

MUg Child Care Training & Educa[on Courses

Target -‐ Child Counselors/Psychologists, Social Workers, Nurses, Doctors, School Teachers, Spiritual Leaders, Parents/

Caregivers of CLHIV

Paediatric Pallia[ve Care

Higher diploma in Child Counseling

Communica[ng with Children

Paediatric ART Management

Paediatric HIV Management

Our Passion: Bringing the Smiles back to Children of Uganda

What Has Worked for MUg?

Keep LISTENING to the Children & Learn

Play Therapy

Child-‐specific Counselling

System-‐wide child-‐caregiver training

Self-‐administered service assessments

Peer-‐led ini'a'ves

Technology Focus on rights

& responsibili'es

HH Economic Strengthening for sustainability

Acknowledgements

•  USG esp. through CDC Uganda & CHAI •  Ministry of Health Uganda •  Diana Fund •  Civil Society Fund •  Cardno Emerging Markets USA •  RAND Corpora'on •  WHO •  Private sector en''es •  Individual donors

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