adherence children

7/24/2019 Adherence Children

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Special Issues in PediatricAntiretroviral Treatment

Adherence

Treatment FailureDisclosure


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Antiretroviral Therapy

Coordinating care and support: the

multidisciplinary team Antiretroviral therapy: monitoring and

drug toxicity (for clinicians)

Antiretroviral therapy: second lineregimens (for clinicians)

Pediatric antiretroviral therapy: specialissues (for clinicians)

HIV care & treatment for nonclinicians

The MTCT - Plus Init iative 2


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Learning Objectives

List the components of the MTCT-Plus

approach to ARV adherence for children Identify ways to prepare a family for ARV

adherence

List ways to monitor and support ARVadherence

Describe ways to assess adherence

Recognize treatment failure and considerpotential causes



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Learning Objectives (cont)

Prescribe accurate doses of ARV for

children Prescribe second-line regimensappropriately

List important differences between adultdisclosure and pediatric disclosure of HIVstatus

Describe advantages/disadvantages ofdisclosing/not disclosing HIV status to achild



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SPECIAL ISSUES

ADHERENCE

TREATMENT FAILURE

DISCLSOURE



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Adherence to Treatment:

Issues for Children ARV Treatment for children requires:

Collaboration between the child and caregiver Commitment of the caregiver Cooperation of the child

ARV Treatment for children is complicated by: Developmental stage/age of the child

Parent-child interaction

Psychosocial milieu

Relatively poor palatability of many pediatricformulations

Caregiver factors



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Adherence and Suppression of HIV-1

PENTA 5

Gibb D et al, Pediatr Infect Dis J 2003:22;56



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Adherence and CD4 Response, U.S.

20

15

10

5

00 50 100 150 200 250 300 350 400

Watson D et al. Pediat Infect Dis J 1999;18:682



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Reported Difficulties Taking ARV

Medications, PENTA 5 Taste/Palatability/Volume

Difficulties with unpleasant flavor

Taste causes nausea

Hate taste and smell

Too many pills Social Situations Fear of disclosure

Visiting or out with friends

Visiting relatives over weekend Visitors in house

Had to leave her with a friend for the day

Gibb D et al, Pediatr Infect Dis J 2003:22;56



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Factors Associated with Adherence

Demographic Variables: age, sex, caregivertype, caregiver sex, income

Disclosure to child, to others

Caregiver-child communication

Caregiver Self-efficacy Caregiver Health Beliefs

Caregiver Depression

Stress

Stigma



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An Approach to Adherence:

Giving Medications to Infants & Children

Promoting Adherence:

1. Education

2. Preparation

3. Monitoring4. Support

Assessing Adherence1. Assessment Methods

2. Addressing Barriers



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1. Adherence Education

Define adherence Never miss a dose

Keeping to specific times of administration Taking it the right way

Lifelong treatment, even when feeling well

Underscore difficulty of task

Explain importance of strict adherence Use simple terms, visual aids, analagies

Emphasize need for communication with health careteam Trust

Partnership

Honesty



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Adherence

1. Education

2. Preparation3. Monitoring

4. Support



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2. Adherence Preparation

ARV treatment is rarely an emergency

Take time to prepare the child and thecaregiver

Personalize medication administration tomatch the specific aspects of a childs and

familys life

Address the WHO, WHAT, WHEN andHOW of medication administration.



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2. Adherence Preparation (cont)

WHO will administer the medications?

Everyday? Weekdays and weekends? WHAT medications will be given?

Familiarity with medication

WHEN will medications be given?

Establish specific times and routines

HOW will medications be given? Details of administration



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HOW will medication be given?

Details of administration Using syringes or measured spoons

Cutting and crushing tablets

With or without food

Mixed with beverage

Mixed together

Sequencing



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Other preparatory tools for children:

Taste testing Observation of dosing

Training for pill swallowing Behavioral reward system

Role play

Anticipating problems

Hypothetical scenarios What would you do

if.vomiting, refusal, fever, other?



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Adherence

1. Education


4. Support



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3. Adherence Monitoring

No perfect measures

Emphasize the importance of honestreporting

Importance of multidisciplinary approachto monitoring



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3. Adherence Monitoring (cont)

Routine assessment of medication administration

1 week recall of missed doses

Descriptive, open-ended questions Many mothers tell us that they sometimes have trouble giving

their child the medicine. Are there times when you haveproblems giving your child his doses?

Its not always easy to remember to give medicine every day.Do you ever forget a dose?

Are there times when your child doesnt want to take themedicines? Does that ever happen to your child?

Pharmacy Records Pill counts

Directly Observed Therapy



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Adherence

1. Education


4. Support



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4. Adherence Support

Lifelong adherence to complex medication regimens isan extremely difficult task!

Identify and reinforce effective, successful strategies Psychosocial Support

Disclosure

Adherence Buddy

Support Groups

Adherence Aids Pill Boxes

Blister Packs

Calendars

Pre-pouring

Labeling syringes


Wh t D Y D Wh Adh


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What Do You Do When Adherence

is Incomplete?

1. Assess why adherence is incomplete

2. Address the barriers to adherence



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Assessing Incomplete Adherence

1. Review current regimen

2. Inquire about problems administeringmedications obtain a descriptive

assessment

3. Review WHO, WHAT, WHEN, HOW

4. Observe administration


Add i Adh B i


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Addressing Adherence Barriers:

What to do Next

1. Identify specific barriers to adherence Consider stopping current regimen

2. Address specific barriers to adherence

3. Alter current regimen or change to new regimen

Formulation or single drug substitution New regimen in the case of treatment failure

4. Begin again

Adherence education Adherence preparation

Adherence monitoring

Adherence support



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Adherence Fatigue

Do not assume once adherent, always

adherent It can be anticipated that with time:

Children may tire of taking medications

Caretakers may tire ofadministering/supervising medication

Providers may tire of monitoring/supportingadherence

Beware adherence fatigue!


S Adh t ARV f


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Summary: Adherence to ARV for

Children There are multiple barriers to adherence

Successful adherence requires education and preparation before starting treatment assessment and monitoring during treatment

Most families will have periods of time whenadherence is incomplete Barriers to adherence should be assessed and

addressed Providers and families may experience

Adherence Fatigue



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Siphos Adherence to ARV

Treatment



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Sipho

2.5 yrs old, began ZDV + 3TC + NVP at 6

mo of age when he was diagnosed withpneumonia and failure-to-thrive. He has

done very well on this regimen.



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How do You Define ARV Treatment

Success?



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Defining Treatment Success

1. Clinical Improvement Appropriate/improved growth for age

No WHO II or III category illnesses/ No CDC

B/C illnesses Age-appropriate development/Gaining new

milestone

No hospitalizations

2. Increased/increasing CD4 count



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Siphos Refusal to Take Medication

Siphos mother, Mpho, reports having

trouble giving him medication lately. In thepast he has always taken the ARV

treatment easily, but over the last several

months it hasnt gone well.



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1. Review current regimen

2. Inquire about problems administeringmedications obtain a descriptive

assessment

3. Review WHO, WHAT, WHEN, HOW

4. Observe administration



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What Questions Should You Ask

Mpho?



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Questions for Mpho

Who gives the medicine? All the time?

Which medications is he getting?

What happens when Mpho tries to give him hismedication what does Sipho do?

Does he 1) refuse; 2)vomit, spit, choke; 3)run away?

Does this happen all of the time or some of the time?

Is it one drug in particular or all of the drugs?

How long does it take to give him his medication?

Has he missed any of this doses? All of the

medications or just one? Has Mpho found anything that helps to give his meds?

Other?



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Siphos Current Medications

ZDV 15cc every 12 hours

3TC 6cc every 12 hours NVP 11cc every 12 hours

Co-trimoxazole 10cc every morning MVI 1 cc every morning



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Sipho Refuses Medication

He doesnt like the ZDV. He runs from

Mpho when she tries to give him hismedications. She must capture him, holdhim down, force his mouth open to take

the ZDV. He then gags and chokes, oftenvomiting the medicine. He takes the NVPand 3TC, but sometimes she thinks he

doesnt keep them down either. Mpho,having learned the importance ofadherence, is worried.



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What are Possible Reasons for

Siphos Behavior?


Possible Reasons for Siphos


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Possible Reasons for Sipho s

Behavior Change New developmental stage

Increasing emotional and physicalindependence, terrible twos

Changes in household

Change in schedule New changes in caretaker

New members of household

Adherence fatigue

Other



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What Should You Do?


Addressing Incomplete Adherence


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What to do Next? Identify specific barriers to adherence

Observe medication administration

Assess parent-child interaction

Address specific barriers to adherence Offer explanation for Siphos change in behavior

Alter current regimen or change to new regimen Formulation or single drug substitution

New regimen in the case of treatment failure

Begin again with adherence1. Education

2. Preparation

3. Monitoring

4. Support



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What Can be Done to Help Mpho

Give Sipho his ARV?


Other Ways to Give Sipho Medications


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Other Ways to Give Sipho Medications

Consider behavioral interventions

Reward system Explore ways to mask taste

Mix with liquids

Mix medications together

Tasty chaser

Explore other formulations Crushed tablet if dosing appropriate

Other?


Calculating Siphos


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Sipho weighs 15kg. His height is 92 cm.

What is his Body Surface Area (BSA)?

g p

Antiretroviral Doses

BSA = m2= wt x ht

3600

BSA = m2

= 15kg x 92cm = 0.63600

ZDV dosing = 240mg/m2 every 12 hours

240mg = xmg =144mg

m2 .6m2


Si h A ti t i l D i


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Siphos Antiretroviral Dosing

Each ZDV tablet = 300mg. Tablets are

scored and can be broken in half toadminister 150mg/dose.

Together with Mpho you decide to change

the ZDV to a crushed tablet twice daily.


Siphos Follow Up


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Siphos Follow-Up

Mpho & Sipho return 2 weeks later. Mpho

reports success giving Sipho crushedtablets (She crushes and mixes the tab

with sweet pudding) and he takes it

willingly.


SPECIAL ISSUES


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SPECIAL ISSUES

ADHERENCE

TREATMENT FAILURE

DISCLSOURE


Joseph


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Joseph

Joseph, a 6yr 9 mo old boy, was identified

as HIV-infected when his mother enrolledinto MTCT-Plus 18 months ago. He was

eligible for ARV treatment based on:

5% CD4

Failure-to-thrive

He was begun on ZDV + 3TC + NVP. Hehas done very well on treatment.



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How do You Define Treatment

Success?




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1. Clinical Improvement

Appropriate/improved growth for age

No WHO II or III category illnesses/ No CDC

B/C illnesses Age-appropriate development/Gaining new

milestone

No hospitalizations

2. Increased/increasing CD4 count


New Concerns for Joseph


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New Concerns for Joseph

Joseph is seen in clinic for his routine visit.His mother, Nomvula, reports he is doing

fine though recently he hasnt been eatingwell and has some diarrhea. The routineevaluation reveals:


New Concerns for Joseph (cont)


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New Concerns for Joseph (con t)

The clinician notes that Joseph has not

sustained his anticipated rate of growth.He also has new clinical findings on

physical examination: diffuse

lymphadenopathy, parotid enlargementand hepatomegaly.



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What is the Etiology of These New

Problems?


Determining the Etiology of


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Josephs ProblemIs there evidence of:

HIV disease progression? Intercurrent illness not related to disease

progression? Developmental, psychological, social

issues affecting the childs health?

Drug toxicity or side effects?

Inadequate adherence?


Determining the Etiology of New


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Findings History Careful history

Clinical complaints and concerns Social evaluation

Nutrition Assessment

Adherence Assessment

Comprehensive Physical Examination

Diagnosis, evaluate and manage specific clinical

problems (i.e. failure-to-thrive, diarrhea). Monitor immune function

Evaluate response to treatment and/or

management.The MTCT - Plus Init iative 55


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What Should Be Done for Joseph?


Joseph


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Return Visit Joseph and Nmvulo return in 4 weeks.

Nmvulo reports occasional fevers andpoor appetite. Joseph has not gained any

weight despite Nmvulos effort to offer him

special foods. Results from all diagnosticlab studies are negative. Abnormalities on

physical examination persist.


Determining the Etiology of


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Josephs ProblemIs there evidence of:

HIV disease progression? Intercurrent illness not related to disease

progression?

Developmental, psychological, social

issues affecting the childs health?

Drug toxicity or side effects?

Inadequate adherence?


Criteria for ARV Treatment Failure


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Criteria for ARV Treatment Failure

Clinical status

New or recurrent AIDS-defining illness No improvement in or worsening of growth

CD4:

Failure to improve or worsening after 6

months of treatment

Return of CD4% to pre-therapy level Fall of 30% CD4 number from peak value



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Why Do ARV Treatment Regimens

Fail?


Reasons ARV Treatment


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Regimens Fail Inadequate Adherence

Inadequate Drug Levels Under-dosing

Poor absorption

Varying pharmacokinetics

Metabolic Changes in a Growing Child

Drug-drug interactions


Consequences of Inadequate


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Adherence Inadequate drug levels

Incomplete viral suppression and activeviral replication

Emergence of drug resistance to current

treatment

Ongoing viral replication

Immune deterioration

Clinical progression


Proportion of Children Remaining on

Nevirapine Containing Regimens U K


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Nevirapine-Containing Regimens, U.K.

ARV Naive

Arv Experienced

Verweel G et al, AIDS 2003;17:1639


CD4% During 96 Weeks of Nevirapine

Treatment U K


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Treatment, U.K.



Weight Z-scores for Children Receiving


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Nevirapine Treatment, U.K.



Adherence Concerns for Joseph


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p

Nmvulo reports that several months ago

she spent two weeks visiting her mother.Her husband was responsible for giving

Joseph his medications. Her husband

said he gave all the medications, butNmvulo thought the bottles seemed full

when she returned. She has given him allmedications since then.



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Why is Joseph Failing Treatment

Now?


Joseph ARV Treatment Failure


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ZDV + 3TC + NVP is very unforgiving.

Several missed doses can result in viralreplication and the development of resistance.

Drug efficacy is easily lost.

Despite improved adherence themedication is no longer effective.



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What Should Be Done For JosephNow?




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What to do Next? STOP CURRENT REGIMEN Identify specific barriers to adherence

Observe medication administration Assess parent-child interaction

Address specific barriers to adherence Alter current regimen or change to new regimen

Formulation or single drug substitution

New regimen in the case of treatment failure

Begin again with adherence

1. Education2. Preparation

3. Monitoring

4. Support


Adherence Preparation


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ARV treatment is rarely an emergency

Take time to prepare the caregiver and thechild

Personalize medication administration to

match the specific aspects of a familys life

Address the WHO, WHAT, WHEN and

HOW of medication administration.


Josephs ARV Treatment Plan


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A likely second-line regimen:

Abacavir (ABC) + ddI + Lopinavir/ritonavir(LOP/R)

How do you calculate Josephs doses?


Calculating ARV Dosing


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Wt = 22kg Ht= 106cm

ABC8mg/kg every 12 hours

22kg x 8mg = 176mg20mg/cc

176mg = 9cc every 12 hours

20cc




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Wt = 22kg Ht= 106cm

ddI120mg/m2 every 12 hours

120 mg/m2 x .8m2 = 96mg every 12 hours

Round off to 100mg every 12 hours

BSA = m2= 22 x 106

3600

BSA = m2= wt x ht

3600




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Wt = 22kg Ht= 106cm

LOP/R10mg/kg every 12 hour

80mg/ml

10mg/kg x 22kg = 220 mg=2.75cc

every 12 hours

Round off to 3 cc every 12 hours


Josephs New Regimen


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Joseph is started on his new regimen. Hedoesnt like the taste of the LOP/R, but

tolerates it when given a sweet treat. He

does very well on his new regimen.


SPECIAL ISSUES


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ADHERENCE

TREATMENT FAILURE DISCLOSURE



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Telling a Child That She/He HasHIV/AIDS



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What does the word disclose

mean?


The Word Disclose Means


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To reveal

To make known To make public

To share



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How does telling a child that they

are HIV infected, (disclosing theirHIV status) differ from an adult

disclosing their own status?


Disclosing to Children


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Must consider:

Needs, feelings, beliefs of the child and

needs, feelings, beliefs of theparent(s)/caretaker(s)

Pediatric health care providers traditionally advocate for the

needs of the child Multidisciplinary teams advocate for the needs of the family

Current and evolving developmental and

cognitive stage of the child Existing status of family dynamics and

communication



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Why are Parents Reluctant to Tell

their Child that He/She is HIV-Infected?


Reasons Parents are Reluctant


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Fear of impact of disclosure on childs

psychological status and emotional health

Reduce childs will to live

Leads to depression in child

Fear of inadvertent disclosure to others by child Child cannot keep secrets

Protecting child from social rejection and stigma

Guilt about transmission Association with sexual taboos

AAP, Pediatrics 1999;103:164Lipson M, Hasting Ctr Rpt 1993;23:6


Reasons Parents are

Reluctant (cont)


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Difficulty coping with their own illness or illnessof other loved ones

Established coping strategies within families Traditional silence around illness and disease

Limited communication within families

Denial as coping strategy

Belief that child will not understand

Children as hope for future Avoid thinking of HIV keeps fatality at bay

Other AAP, Pediatrics 1999;103:164

Lipson M, Hasting Ctr Rpt 1993;23:6


How Often Do Parents Disclose?


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Children Unaware of Their HIV Status

43% (n=42) of 9-16yo (Grubman 1995, US)

70% (n=92) of 10yo (Cohen 1997 US)

83% (n=35) of 5-10yo (Funck-Brentano 1997,France)

57% (n=51) of 6-10yo (Lester 2002 US)

70% (n=77) of 3-13yo (Mellins 2002, US)



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What are Reasons to Disclose a

Childs HIV Status?


Reasons to Disclosure


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Children may Develop fantasies about their illness

Feel isolated from sources of support

Learn HIV status inadvertently

Children often want and ask to know what iswrong

May already know diagnosis but are keeping thesecret

With other chronic and fatal illnesses children

who know their status have Higher self-esteem Lower rates of depression

Lower rates of parental depression


Reasons to Disclose (cont)


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Recognition of Autonomy

Children achieve mastery over their lives as

they age

Ongoing and evolving process of involvement with

their illness and its consequences

AAP, Pediatrics 1999;103:164

Lipson M, Hasting Ctr Rpt 1993;23:6



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Do You Believe Children Should Be

Informed of Their HIV Status?

If yes, why?

If no, why?



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There is general consensus among

experienced pediatric HIV providers that

children should be informed of their

diagnosis.

Primarily US and European experience

Experience in Africa and other high prevalence

settings is yet to be determined Accelerated by the introduction of ARV treatment


Not When, but How


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Disclosure is more than revealing HIV status

Entails an ongoing discussion of health and

health-related activities

Parents/caregivers should be encouraged to begin

and continue a dialogue about health issues with their

child beginning at an early age

Simple explanation of nature of illness for youngest children

Disclosure about nature and consequences for older children

When to use the words HIV/AIDS will vary with theneeds of the child and family


Not When, but How (cont)


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Let the child be the guide

Individualize the Approach - tailor discussion

according to child's:1. Age

2. Cognitive development

Use tools and language for different developmentalcapacities: drawing, storytelling, play, drama

3. Level of maturity Assess coping skills of the child

4. Health status Terminally ill child may benefit from discussion about death

rather than specific diagnosis


Assisting Families - Ready for

Disclosure


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1. Preparation

2. Education3. Planning

4. Follow-Up


Preparation and Education


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1. Preparation Why disclose now?

What do you want to communicate to your child? What are the most difficult questions for you to

answer when your child knows his/her HIV status?

2. Education Acknowledge difficulty of disclosure and affirm

motivation to begin process

How to explain HIV transmission to child Anticipated questions and response from child

Post disclosure event expectations


Planning & Follow-up


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1. Planning When and where?

Who will be there? What will you say?

Plans after disclosure?

2. Follow-up School and family functioning

Monitor medical treatment adherence

Disclosure to peers and others Support groups, counseling


Counseling Children


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Help children cope with emotions and

challenges they experience when they

discover they have HIV/AIDS

Help children with HIV to make choices

and decisions that will prolong their lifeand improve their quality of life

SAT 2000


Counseling Children

Establishing a helping relationship


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Model open discussion during visits

Address questions to the child

Ask child if he/she has questions

Discuss importance of dialogue and

disclosure early and often Routine part of pediatric HIV care

Use good counseling skills

Establishing a helping relationship Helping children tell their story

Listening attentively to children Giving children correct and appropriate

information

Helping children make informed decision

Helping children recognize and build on

their strengths

Helping children develop a positive

attitude towards life. SAT 2000

Perspective on Disclosure and

Multidisciplinary Teams


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Members of multidisciplinary teams may findthemselves in conflict around disclosure to

children Some team members may advocate for pediatric

disclosure

Others, particularly those working with adultcaregivers, may resist disclosure

Multidisciplinary teams may hold/mirror conflicts

occurring in families. Needs of the child vs. needs of the adult Different opinions of different adults


Pediatric Disclosure and

Multidisciplinary Teams


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Importance of self-reflection

Understand how work affects individual

members and team as a whole

Consider the issue from different points of

view (child, parent, health professional) Importance of retaining family-focus and

considering decisions in best interest of

the child and the family


Summary

Di l f HIV t t t hild i


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Disclosure of HIV status to a child isguided by the needs of the child and their

caregivers Disclosure should be part of an ongoing

dialogue about health and treatment Disclosure should be guided by the age,developmental and emotional stages, and

health status of the child Disclosure is difficult!



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Dinah: Disclosure of HIV

Diagnosis


Dinah

Di h i 11 ld i l H th


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Dinah is an 11 year old girl. Her mother

died five years ago and she has since

lived with her aunt Rachel, uncle John and

maternal grandmother Gloria. Rachel was

enrolled in MTCT-Plus during herpregnancy last year. Dinah and John

both tested HIV positive and were enrolled

as well.


Dinah Starting Treatment

Di h li ibl f ARV t t t


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Dinah was eligible for ARV treatment

based on a history of recurrent varicella

zoster, chronic thrush and low CD4%. She

began ZDV + 3TC + NVP but developed a

Grade III rash. NVP was changed toNelfinavir (NLF).

She has done well on treatment.


Dinah Resisting Medications

G d th Gl i b i Di h f h


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Grandmother Gloria brings Dinah for her

monthly visit. She reports that everything

is fine. When asked about missed doses

Gloria reports that Dinah gets all of her

medication. She reluctantly mentions thatDinah is fighting with her about taking her

medications.


Wh t D Y W t t A k Gl i ?


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What Do You Want to Ask Gloria?



Re ie c rrent regimen


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Review current regimen

Inquire about problems administering

medications obtain a descriptive

assessment

Review WHO, WHAT, WHEN, HOW


Dinah Refuses Medications

Gloria states that Dinah no longer wants to


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Gloria states that Dinah no longer wants totake her medications. She was a good girl

in the past and took them withoutcomplaint though the blue pills alwaysmade her choke. Now she doesnt wantthem any more.

Dinah keeps asking why she has to take

these pills. She wants to know when shewill finish taking them.


Gloria Refuses Medications (cont)

When you ask Gloria what Dinah knows


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When you ask Gloria what Dinah knows

about her health she becomes quiet. You

notice a few tears. She doesnt want todiscuss Dinahs problem. She says that

the child is taking medications now andwill be fine.


What Should You Do?


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What Should You Do?


Dinah Refuses Medications

Dinah and Gloria return home You


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Dinah and Gloria return home. Youdiscuss the case at next team meeting and

decide to approach aunt Rachel when shecomes for her monthly MTCT-Plus visit.

When asked about Dinahs medicationadherence Rachel notes that she hasbeen resisting taking her medications.


Dinah

Family Tension

Rachel feels that Dinah should know about


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Rachel feels that Dinah should know about

her illness. She and grandmother Gloria

have fought about it several times. Theyboth take care of Dinah, but Rachel also

has her babies to raise. She doesnt wantto fight with her own mother.


Why Do You Think Grandmother


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Why Do You Think Grandmother

Gloria Doesnt Want to DiscussHIV with Dinah?


What Can the MTCT Plus Team Do To


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What Can the MTCT-Plus Team Do To

Help Dinah and Her Family?


The Disclosure Process

Beginning a Dialogue

Meet with family members alone then together


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y g Begin a discussion/dialogue about Dinahs health and

behaviors Address Glorias concerns about Dinah.

Work with family members to enhancecommunication

Offer counseling for Dinah, other familymembers

Follow general counseling guidelines Continue to monitor adherence closely


Beginning a Dialogue (cont)

After several family meetings, Rachel takes the


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y g ,lead and starts to talk with Dinah about her

health. Gloria doesnt take part in theconversations, but doesnt prevent them.

Rachel who is also prescribed ARV treatment

begins to take her medicines with Dinah. Shetalks about staying healthy and having strongblood. After several weeks Dinah begins to ask

questions and stops fighting about hermedications. She and Dinah become pillbuddies and complain to each other about thenasty blue pills.


Dinah Continues to Ask More

Questions

Several months later Rachel brings Dinah


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Several months later Rachel brings Dinah

to her medical appointment. She tells the

clinician that she thinks it is time to tellDinah more about her illness. Gloria

doesnt want to take part but has agreed tolet Rachel talk with Dinah.

Rachel asks for help.


What Would You Do To Assist


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What Would You Do To Assist

Rachel and Her Family?


Assisting Families - Ready for HIV

Disclosure

1. Preparation


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1. Preparation

2. Education

3. Planning

4. Follow-Up


Dinah

Disclosure of HIV Status to Dinah

The team works with Rachel and John in


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preparation for meeting with Dinah.

Rachel asks that the MTCT-Plus nurseand physician help during the session.



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Dinahs Follow-up Care

Rachel, John, the pediatrician, and the


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, , p ,

nurse meet with Dinah to disclose her HIV

status. The meeting is very emotional forall participants. Dinah and Rachel choose

to meet with the counselor on a weeklybasis to continue talking about their

concerns.


Summary

Adherence and disclosure for children


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Involve the child as well as one or more adults

Require attention to Age, developmental stage, feelings, health status of the child

Beliefs and feelings of the caregivers

Family dynamics

Adherence and disclosure for childrenshould be viewed as ongoing processesrequiring

Systematic approach Varied skills held in multidisciplinary teams


Summary

Current knowledge about adherence and


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g

disclosure must be adapted to the cultural,

ethnic and religious setting of a particularcommunity or environment

Work around adherence and disclosure isdifficult! There are no easy answers.


adherence children

Documents