1. Continuing Care for Mothers, Children, and Families Following Prevention of Mother-to-Child Transmission of HIV (PMTCT) Programmes

2. 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.

3. 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.

4. 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.

5. Introduction to Comprehensive Care for Mothers, Children, and Families
Session 1
Introduction to Comprehensive Care for Mothers, Children, and Families

6. 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.

7. 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.

8. Introductory Presentation
PMTCT and HIV Care and Treatment Programmes

9. Large Group Discussion
Barriers to accessing HIV-related treatment, care, and support
Role of a PMTCT healthcare worker in comprehensive care

10. 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

11. Comprehensive Management of a Person with HIV
Shared responsibility for client:
Multi-disciplinary team
Community
Family
Client themselves

12. Components of comprehensive treatment, care, and support
For mother and partner
For child
For family

13. 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

14. 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

15. 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

16. 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

17. 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

18. Comprehensive Care for Family
Referrals and links to domestic violence organizations
Bereavement counselling
Social support services
Legal advice and services
Employment, income-generation activities

19. Family-centred Care
Family-centred care recognizes all persons who function as family members, as identified by the person living with HIV infection.

20. 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

21. 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

22. Discussion Question
How has the role of PMTCT healthcare workers expanded?
Discuss how healthcare workers feel about this expanded role. ?

23. 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”

24. Exercise 1
Facilitating Referrals between PMTCT and HIV Care and Treatment large group discussion

25. 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 HIV-related 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 HIV-exposed Infants and Children”

26. 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

27. 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

28. 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

29. 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

30. 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

31. 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)

32. Common Signs and Symptoms of HIV infection in Infants/Children
Digital clubbing from lymphoid interstitial pneumonia
Severe wasting/malnourishment

33. 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”

34. Common Signs and Symptoms of HIV infection in Infants/Children
PCP pneumonia
Oral thrush

35. 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.

36. Growth and HIV Infection
Growth monitoring and nutritional assessment performed for all for HIV-exposed 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 HIV-exposed Infants and Children

37. Exercise 2
Clinical Presentation of HIV in Infants and Children large group discussion & case studies

38. 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

39. 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

40. 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

41. 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

42. 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?

43. 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.

44. 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

45. 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”

46. Linkages, Referrals, and Retention Strategies
Session 2
Linkages, Referrals, and Retention Strategies

47. 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.

48. 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.

49. 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

50. 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

51. 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

52. 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

53. 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)?

54. 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

55. 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

56. 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

57. 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

58. Suggested Linkages and Referrals for HIV-infected Women and Families
Counselling and testing (partner and family testing)
HIV treatment, care, and support, including ARV therapy
Routine well baby or well child care
Healthcare providers in private specialized practice
TB and STI programmes
Laboratory services
Support groups and positive mothers’ clubs
Community-based HIV groups

59. Suggested Linkages and Referrals for HIV-infected Women and Families
Family planning and safer sex counselling
Nutritional education and support
Safer infant feeding counselling and support
Community/home-based care services
Faith-based and community organizations
Treatment and support for drug and/or alcohol abuse
Mental health services
Domestic violence services

60. 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
Comprehensive and standardized referral forms
Transport systems, good roads, and public transportation

61. 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

62. 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

63. 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?

64. Referrals
Referrals are the guided or orchestrated movement of clients to obtain services based on the specific needs of the client.

65. Steps in the Referral Process
Assessment of client need
Outline available services
Assess and address potential barriers to attending referral
Transportation
Lack of funds
Fear of stigma

66. Steps in the Referral Process
Ensure client understands purpose of referral
Document referral accurately
Discuss confidentiality
Provide correct documentation for referral including
Time, location, and contact person

67. Steps in the Referral Process
Ask client for feedback on referral
Document and evaluate referral
Establish a mechanism with referral agencies to facilitate feedback
Reassess barriers

68. 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.

69. 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

70. Referral Networks A referral network can include:
A lead organization to coordinate.
Regular meetings of healthcare workers.
Newsletters or method of communication.

71. 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.

72. Community Resources small group discussion
Exercise 3
Community Resources small group discussion

73. 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.

74. 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)

75. 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

76. Barriers to Comprehensive HIV Care
Time commitment
Multiple referrals necessary for comprehensive care
Different sites
Different times
Different purposes

77. 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

78. Strategies to Overcome Barriers
Strategies should be individually tailored
Implemented by
multi-disciplinary team
Social workers
Physicians
Counsellors

79. 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

80. 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

81. Strategies to Overcome Barriers
A warm, welcoming non-stigmatizing clinic environment where clients are not singled out as HIV-infected will promote client retention.

82. Retention Strategies role play
Exercise 4
Retention Strategies role play

83. 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?

84. Best Practices in Comprehensive Care
The Paediatric Case Management Meeting
PLHIV Trained as Adherence Counsellors

85. There are seven key points:
Module Key Points
There are seven key points:

86. Module Key Points
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.

87. Module Key Points
Healthcare workers should ensure that mothers who are HIV-infected return for all postpartum appointments or are visited at home.

88. Module Key Points
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.

89. Module Key Points
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.

90. Module Key Points
Linkages are formal networks between organizations or an agency and the community, facilitating the referral of the client and her family for services.

91. Module Key Points
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.

92. Module Key Points
Referral networks take time and commitment to create and maintain. The first step in creating a network is to map all possible referral resources.