Transcript Continuing Care for Mothers, Children, and Families - I-TECH

Continuing Care for
Mothers, Children,
and Families
Following Prevention of
Mother-to-Child Transmission
of HIV (PMTCT) Programmes
1
Objectives for this Module
 Describe comprehensive HIV care for
women, children, and their families.
 Understand the basic principles and
purpose of family-centred care.
 Identify and strategically address gaps
in the provision of comprehensive HIV
care for women, children, and their
families.
2
Objectives for this Module
 Recognize common signs and symptoms
of HIV in infants and young children.
 Understand the importance of male
involvement in PMTCT and HIV
programmes and be able to suggest
creative strategies to encourage their
participation.
 Describe the difference between linkages
and referrals.
3
Objectives for this Module
 Improve referral practices between
PMTCT and HIV care and treatment
programmes.
 Discuss retention strategies for keeping
women and their families in care.
 practise problem-solving skills to address
social issues affecting a client’s capacity
to follow-up with care and treatment.
4
Session 1
Introduction to Comprehensive Care
for Mothers, Children, and Families
5
Objectives of Session 1
 Describe comprehensive HIV care for
women, children, and their families.
 Understand the basic principles and
purpose of family-centred care.
 Identify and strategically address gaps
in the provision of comprehensive HIV
care for women, children, and their
families.
6
Objectives of Session 1
 Recognize common signs and
symptoms of HIV in infants and young
children.
 Understand the importance of male
involvement in PMTCT and HIV
programmes and be able to suggest
creative strategies to encourage their
participation.
7
Introductory Presentation
PMTCT and HIV Care
and Treatment Programmes
8
Large Group Discussion
 Barriers to
accessing
HIV-related
treatment,
care, and
support
 Role of a PMTCT healthcare
worker in comprehensive care
9
Role of PMTCT Healthcare
Workers in HIV Care & Treatment




Assess client needs
Recognize clinical symptoms
Understand when to refer
Establish and maintain referral and
linkage systems
 Participate in client case management
 Advocate for comprehensive care
needs
10
Comprehensive Management
of a Person with HIV
 Shared responsibility for client:
 Multi-disciplinary team
 Community
 Family
 Client
themselves
11
Components of comprehensive
treatment, care, and support
 For mother and partner
 For child
 For family
12
Comprehensive Care
for Mother and Partner
 HIV testing for partner
 ARV therapy assessment
and referral
 Screening, prevention, and
treatment of HIV-related
conditions
 Counselling and support on
adherence and nutrition
 Psychosocial and
spiritual support
13
Comprehensive Care
for Mother and Partner
 Information, counselling, and
support on infant feeding
 Safer sex and
family planning
 Referral to community organizations
 Disclosure counselling and support
 Palliative care, when indicated
 Drug and alcohol counselling and treatment
14
Comprehensive Care
for Child
 ARV therapy
assessment and
referral
 Screening, prevention, and
treatment of HIV-related
infections
 Growth and development
monitoring
 Immunizations
 HIV diagnosis by laboratory test
or presumptive diagnosis
15
Comprehensive Care
for Child
 HIV education (as appropriate)
 Psychosocial support
 Disclosure counselling
(as appropriate)
 Links and relationships
with community service
organizations and
agencies to promote
continuity of care
16
Comprehensive Care
for Family
 HIV testing for older children
 Adherence counselling
 Links and relationships with community
service organizations and agencies to
promote continuity of care
 HIV education
 Psychosocial and spiritual support
17
Comprehensive Care
for Family
 Referrals and links to domestic
violence organizations
 Bereavement counselling
 Social support services
 Legal advice and services
 Employment, income-generation activities
18
Family-centred Care
Family-centred care recognizes all
persons who function as family
members, as identified by the person
living with HIV infection.
19
Goals of Family-based Care
 Decrease morbidity and
mortality
 Improve the quality-of-life for
HIV-infected women, children,
and their families
 Reduce transmission of HIV
through secondary prevention
counselling and education
20
Opportunities to Reach Families
within PMTCT Programmes
 HIV counselling and testing for all sexual
partners
 Family-focused adherence
and disclosure counselling
 Mechanisms to reach
family members during
appointments
 Postpartum
 MCH
 Paediatric
21
Discussion Question
 How has the role of PMTCT healthcare
workers expanded?
 Discuss how healthcare
workers feel about this
expanded role.
22
Postpartum Care for
HIV-infected Mothers
 Best practices in postpartum care include:
 Mechanism to communicate mother’s ANC and
L&D history to postpartum nursing staff
 Mechanisms to target mothers who miss ANC
appointments
 Community resources to locate and link mothers
to care
Review Appendix A –
“Checklist for Postpartum Visit for HIV-infected
Women and HIV-exposed Newborns”
23
Exercise 1
Facilitating Referrals between PMTCT
and HIV Care and Treatment
large group discussion
24
Follow-up Care of the
HIV-exposed Infant
 Follows best practices applied to all infants and
children
 Assessment of growth, nutrition, and development
 Vaccines
 Full physical exam focusing on identification of HIVrelated infections
 Cotrimoxazole prophylaxis at 4-6 weeks of age
Review Appendices B and C
“Infant/Young Child Follow-up Visits”
“Monitoring Growth, Nutrition, and Development of HIVexposed Infants and Children”
25
Diagnosis of HIV Infection
in Infants
 Immune system of HIV-infected children
immature
 Close follow-up and diagnosis critical to
saving children’s lives
 1/3rd die by 1 year old
 ½ die by 2 years of age
 Diagnosis using clinical symptoms or HIV
testing
26
Diagnostic Testing of HIV-exposed
Infants and Young Children
 Caribbean guidelines recommend HIV DNA PCR viral
testing be performed for HIV-exposed infants starting
at 6-8 weeks of age.
 HIV antibody tests may be difficult to interpret in
children less than 18 months of age due to the
presence of maternal antibodies to HIV.
 HIV antibody tests can be used to diagnose HIV
infection in children 18 months of age and older.
Always refer to national guidelines and algorithms
27
Recognizing HIV Infection
in Children
 All healthcare workers
working with infants and children:
 Identify the signs and
symptoms of HIV-infection
 Provide or refer for HIV diagnostic testing
and HIV care and treatment
28
Suspecting HIV Infection
in a Child
 All infants/children born to mothers with
unknown HIV status should be
considered at risk
 Encourage and support testing for all
mothers
 Refer to healthcare team specializing in
HIV care if HIV infection is suspected
29
Risk factors for HIV if Mother’s HIV
Status is Unknown
 Mother has symptoms of
HIV or another STI
If mother is diagnosed with
HIV, all of her children need
to be tested
30
Common Signs and Symptoms
of HIV infection in Infants/Children





Low weight and/or growth failure
Lymphoid interstitial pneumonia (LIP)
Hepatosplenomegaly
Pneumonias, including PCP
Oral candidiasis (thrush)
31
Common Signs and Symptoms
of HIV infection in Infants/Children
Severe
wasting/malnourishment
Digital clubbing from
lymphoid interstitial
pneumonia
32
Common Signs and Symptoms of
HIV infection in Infants/Children




Lymphadenopathy
Parotid gland swelling
Recurrent ear infections
Persistent diarrhoea —
for more than one week
 Tuberculosis
Review Table 2:
“Clinical conditions or
signs of HIV infection
in a child who is HIV-exposed”
33
Common Signs and Symptoms of
HIV infection in Infants/Children
PCP pneumonia
Oral thrush
34
Growth and HIV Infection
 Growth failure reported in as
many of 50% of HIV-infected
children
 Growth failure defined as the
persistent and unexplained decline
or levelling-off in weight and the
speed of growth despite adequate
nutrition.
35
Growth and HIV Infection
 Growth monitoring and nutritional
assessment performed for all for HIVexposed and infected children.
 Poor growth may be one of the first indicators
of HIV infection in children.
See Appendix C – Monitoring Growth,
Nutrition, and Development of HIVexposed Infants and Children
36
Exercise 2
Clinical Presentation of HIV
in Infants and Children
large group discussion & case studies
37
Male Partners and HIV
Prevention, Care, Treatment,
and Support
 Men have the power to alter the HIV epidemic
in Caribbean
 Can prevent HIV transmission to their partners
 Can seek/support HIV care and treatment for self
and families
38
Men and HIV Risk
 Culturally acceptable to father
multiple children with different
partners
 Multiple sex partners
 Work migration
 Expectations of “manhood”
 Risky behaviors
 Drug use
 Paying for sex
 Men expected to determine when,
where, and how couples have sex
39
Barriers to Safe Sex
for Couples
 Misinformation about
condoms
 Clumsy
 Reduction of sexual
pleasure
 Belief that contraception is
a woman’s responsibility
 Marriage not necessarily
equated with mutual
faithfulness
40
Barriers to Safe Sex
for Couples
 For women:
 Difficulty of negotiating
for safer sex
 Fear of reprisal if condoms
requested
 Stigma against homosexuality
 High risk sex may not be disclosed
to female partners
41
Discussion Questions
 How can we encourage
men to be more
involved in the health of
their families?
 As healthcare workers
what can we do to
encourage the
involvement of men?
42
The Evolving Role of Men
 Male involvement in ANC
increases rates
of PMTCT uptake.
 Involving men in the health of
the family involves challenging
beliefs about traditional roles.
43
Strategies to Include Men in HIV
Prevention, Care, & Treatment
 Offer HIV counselling and testing at
flexible times
 Promote HIV counselling and testing
where men gather
 Sporting
events
 Workplace
44
Strategies to Include Men in HIV
Prevention, Care, & Treatment
 Involve male role models
 Support for HIV
prevention efforts that
target norms of
masculinity
 Adopt policies at health
facilities that normalize
male attendance
 Provide family planning
counselling to couples
See Appendix F – “Family
Planning in the Context of HIV
Infection”
45
Session 2
Linkages, Referrals, and
Retention Strategies
46
Objectives of Session 2
 Describe the difference between linkages and
referrals.
 Discuss retention strategies for keeping
women and their families in care.
 Improve referral practices between PMTCT
and HIV care and treatment programmes.
 Practise problem-solving skills to address
social issues affecting a client’s capacity to
follow-up with care and treatment.
47
Introduction to Linkages
and Referrals
 Both HIV-infected and uninfected
women benefit from referrals to services
outside of PMTCT programmes.
 Linkages provide a “seamless”
continuum of care as if there were a
single entity delivering a range of
services.
48
Linkages
 Formal networks between
organizations or agencies
 Facilitate the referral of the
client and her family for
services
 Foster a sense of joint purpose
and joint achievement for
healthcare workers
49
PMTCT Linkages
PMTCT programmes should be linked to:
 Tertiary referral hospitals, district hospitals, and
peripheral health facilities
 Other government organizations e.g., schools, social
welfare agencies, and local government
 Communities they serve
 Non-governmental and faith-based community
organizations
 Private doctors and healthcare providers
50
Advantages of Linkages
Linkages promote:
 Access of PLHIV to HIV care and
treatment services
 Better understanding of how to manage
more complex ARV prophylaxis or
treatment regimens
 PMTCT activities and PMTCT
messages amongst all healthcare
workers
51
Advantages of Linkages
Linkages can:
 Reduce HIV-related stigma and
discrimination
 Improve coverage for underserved
populations
 Improve quality of care
 Enhance programme effectiveness and
efficiency
52
Discussion Questions
 What community services
do you refer patients to?
 What services have you
learned about from your
clients (e.g. church
groups, support groups)?
53
Community Linkages
 Community-based HIV services
include:
 Support groups for PLHIV
 Social activities
 Income-generating or volunteer work
 Advantages include:
 Helping families cope with stigma and isolation
 Assisting national programmes with
meeting needs of PLHIV
54
Other Community Linkages
Examples of other community services:
 Faith-based programmes offering
supportive counselling to families
affected by HIV
 Local and/or private businesses
providing HIV education
55
Suggested Linkages and
Referrals for HIV-negative Women
 Counselling and testing
(partner and family testing)
 Routine well baby or well child care,
including immunizations
 Family planning and safer sex
counselling
56
Suggested Linkages and
Referrals for HIV-negative Women
 Nutritional education and
support for new mothers
and infants
 Treatment and support for
drug and/or alcohol abuse
 Mental health services
 Domestic violence services
57
Suggested Linkages and
Referrals for HIV-infected
Women and Families
 Counselling and testing  TB and STI
(partner and family testing)
programmes
 HIV treatment, care,
 Laboratory
and support, including
services
ARV therapy
 Support groups
 Routine well baby or
and positive
well child care
mothers’ clubs
 Healthcare providers in  Community-based
private specialized
HIV groups
practice
58
Suggested Linkages and
Referrals for HIV-infected
Women and Families
 Family planning and  Faith-based and
safer sex counselling
community
organizations
 Nutritional education
and support
 Treatment and
support for drug
 Safer infant feeding
and/or alcohol
counselling and
abuse
support
 Mental health
 Community/homeservices
based care services
 Domestic violence
services
59
Linkage Enablers
Strong linkages formed and maintained by:
 Informal personal relationships e.g., having
studied together in nursing or medical school
 Good communication systems from phones
and E-mail
 Comprehensive and standardized referral
forms
 Transport systems, good roads, and public
transportation
60
Linkage Enablers
Strong linkages formed and maintained by:
 Shared continuing education or training
courses
 Integration of management and support
functions such as planning, education and
training, supplies and maintenance including
ordering ARV drugs
61
Consequences of
Poor Linkages
 Gaps in services for clients
 HIV-exposed children are not diagnosed and do
not receive ARV therapy
 Potentially infected siblings and male partners not
tested for HIV
 Women present back to PMTCT programmes only
during another pregnancy
 Service duplication
 Higher expense
62
Discussion Question
 Describe a situation where you referred
a client for a service but the client did
not attend. Why did they not attend?
How did you handle the situation?
 What mechanisms have been
successful in your own communities
and facilities to develop formal referral
networks?
63
Referrals
 Referrals are the guided or orchestrated
movement of clients to obtain services
based on the specific needs of the
client.
64
Steps in the
Referral Process
1. Assessment of client need
2. Outline available services
3. Assess and address potential barriers
to attending referral



Transportation
Lack of funds
Fear of stigma
65
Steps in the
Referral Process
4. Ensure client understands purpose of
referral
5. Document referral accurately
6. Discuss confidentiality
7. Provide correct documentation for
referral including

Time, location, and contact person
66
Steps in the
Referral Process
8. Ask client for feedback on referral
9. Document and evaluate referral
10. Establish a mechanism with referral
agencies to facilitate feedback
11. Reassess barriers
67
Monitoring Referrals
 Feedback from referrals is necessary to ensure
quality of services.
 Referring facilities are responsible for the success
and appropriateness of their referrals.
The organization receiving the referred client may
need to provide additional technical support to a
healthcare worker (in the referring agency) e.g.,
reviewing medical criteria for referral to TB
programme.
68
Developing a
Referral Network
Referral networks
 Take time and commitment to create and
maintain
 Are constantly changing
 Require healthcare workers to be familiar
with all available services
69
Referral Networks
A referral network can include:
 A lead organization to coordinate.
 Regular meetings of healthcare
workers.
 Newsletters or method of
communication.
70
Referral Networks
A referral network can include:
 Designated contact referral person at
each agency.
 Standardized referral forms.
 A system that tracks referrals and lets
network members know when a referral
has been successfully completed.
71
Exercise 3
Community Resources
small group discussion
72
Barriers to
Comprehensive HIV Care
 The circumstances of client’s lives can
affect their ability to receive truly
comprehensive care for themselves and
their family.
 Healthcare workers must continuously
address barriers to HIV care.
73
Barriers to
Comprehensive HIV Care
Stigma
 Fear of status being revealed
 This can occur when HIV care and
treatment are not integrated into
mainstream care (e.g., separate HIV
clinic)
74
Barriers to
Comprehensive HIV Care
Financial
 Hidden cost of “free” services
 childcare
 transportation
 Cost of specialized services
 e.g., referral to doctor in private practice
75
Barriers to
Comprehensive HIV Care
Time commitment
 Multiple referrals necessary
for comprehensive care
 Different sites
 Different times
 Different purposes
76
Barriers to
Comprehensive HIV Care
Healthcare workers,
lack of knowledge and time
 Lack of knowledge
about available services
 Lack of time to properly
make and monitor referral
77
Strategies to
Overcome Barriers
 Strategies should be individually tailored
 Implemented by
multi-disciplinary team
 Social workers
 Physicians
 Counsellors
78
Strategies to
Overcome Barriers
Disclosure counselling
 Disclosure is first step in receiving care,
treatment, and support for self, partner(s),
and children
 Disclosure is ongoing process that starts in
pre-test counselling
See Appendix I –
Sample Disclosure Counselling Script
79
Strategies to
Overcome Barriers
Incentives
 Letter to the client’s employer
requesting time to attend appointments
 Assistance with childcare
 Transportation
 Food, clothing, or prizes
 Accompanying patient to appointments
 Assistance with obtaining social welfare
benefits
80
Strategies to
Overcome Barriers
A warm, welcoming
non-stigmatizing clinic
environment where
clients are not singled out
as HIV-infected will
promote client retention.
81
Exercise 4
Retention Strategies
role play
82
Discussion Questions
 Think of a successful healthcare
program, why was it successful and
how did it become successful?
 How could these strategies be applied
to other clinics and programmes?
 What resources would be needed to
accomplish the goal?
83
Best Practices in
Comprehensive Care
 The Paediatric Case
Management Meeting
 PLHIV Trained as
Adherence Counsellors
84
Module Key Points
There are seven key points:
85
Module Key Points
1. PMTCT healthcare workers play a vital
role in ensuring that their clients with
HIV receive the care, treatment, and
support they need. When possible,
care of an HIV-infected client should
extend to all family members.
86
Module Key Points
2. Healthcare workers should ensure that
mothers who are HIV-infected return
for all postpartum appointments or are
visited at home.
87
Module Key Points
3. It is important that healthcare workers
recognize the signs and symptoms of
HIV-related infections in infants and
children so that they can make timely
referrals for care and treatment.
88
Module Key Points
4. When male partners are involved in the
care of their families, women are more likely
to agree to PMTCT interventions. Partner
support is also likely to be important in
helping women adhere to ARV medications
and attend follow-up care. Involving men in
the care of their families involves
challenging beliefs about traditional roles.
89
Module Key Points
5. Linkages are formal networks between
organizations or an agency and the
community, facilitating the referral of
the client and her family for services.
90
Module Key Points
6. Referrals are the guided movement of
clients to obtain services based on the
specific identified needs for continuity
of care. The referral process involves
the ongoing assessment of a client’s
needs, coupled with coordinated
service delivery by a group of linked
organizations.
91
Module Key Points
7.
Referral networks take time and
commitment to create and maintain.
The first step in creating a network is
to map all possible referral resources.
92