This Manual was prepared by Drs Tammy Meyers (paediatrician Wits Paediatric HIV Working Group), Brian Eley (paediatrician Red Cross Hospital), Prof. Walter Loening of the National Directorate: Child and Youth Health and members of the South African National Paediatric HIV and AIDS Consensus team, at the request of the Chief Directorate: HIV and AIDS, STIs and Tuberculosis.
Copyright Š 2005 Department of Health Published by Jacana Media Printed by Pinetown Printers ISBN: 1-77009-172-6 This publication is intended to support HIV and AIDS activities and may be copied and distributed as required. Distribution for remuneration is not permitted. Permission from the copyright holder is required for any changes to the format or content of this publication. All rights reserved. 1st edition: 2005
Guidelines for the management of HIV-infected children
National Department of Health South Africa 2005
CONTENTS Section 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Guiding principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Principles of medical management . . . . . . . . . . . . . . . . . . . . . . . . . . . . The human immune system . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The pathogenesis of HIV . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Effect on the immune system . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Modes of HIV transmission to children . . . . . . . . . . . . . . . . . . . . . . . . Prognostic factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Prevention of paediatric HIV-infection . . . . . . . . . . . . . . . . . . . . . . . . Prevention of primary infection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Prevention of unintended pregnancies among HIV-infected women . . . PMTCT . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Laboratory tests to establish HIV-infection of the baby . . . . . . . . . . . .
4 4 4 5 6 7 8 9 9 10 10 10 12
Section 2 Clinical features of HIV-infection . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Opportunities for reaching children in need of HIV care and possible ART . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Clinical staging of HIV-infection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Section 3 Caring for HIV-exposed children . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 HIV-exposure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 What should be done at clinic visits? . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Section 4 Caring for HIV-positive children . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 Health care for HIV-positive children . . . . . . . . . . . . . . . . . . . . . . . . . . 24 Section 5 Nutrition support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Infant feeding choices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Nutrition intervention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Guidelines for feeding children with symptomatic HIV-infection . . . . Feeding problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Food supplementation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
26 26 27 28 29 31
Section 6 HIV and AIDS clinical manifestations and complications . . . . . . . General danger signs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Respiratory conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Gastro-intestinal conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Candidiasis (thrush) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Skin conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
32 32 32 47 55 56
1
Section 7 Other conditions and opportunistic infections . . . . . . . . . . . . . . . . Cryptococcal meningitis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Cytomegalovirus (CMV) infection . . . . . . . . . . . . . . . . . . . . . . . . . . . . Disseminated infection with Mycobacterium avium complex (MAC) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Toxoplasmosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . HIV encephalopathy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Wasting syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Malignancies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
63 64 65 66 67
Section 8 Paediatric palliative care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Painful conditions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Recommendations for pain control in children . . . . . . . . . . . . . . . . . . . The ‘analgesic ladder’ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Breakthrough pain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
68 68 68 69 72
Section 9 Caring for the terminal child . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . General management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Supportive care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Indications for inpatient management . . . . . . . . . . . . . . . . . . . . . . . . . . Home care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
74 74 74 75 75
Section 10 Antiretroviral therapy (ART) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Issues related to paediatric ART . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Principles for ART . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Continuity of care units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Function of units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Requirements before ART is implemented . . . . . . . . . . . . . . . . . . . . . . Information recording . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Goals of ART . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Eligibility for ART . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Treatment of mothers/caregivers/other family members . . . . . . . . . . . ARV drug choices for children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . General comments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Move from first- to second-line therapy . . . . . . . . . . . . . . . . . . . . . . . . Concomitant tuberculosis (TB) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Dosage of ART . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Monitoring for efficacy and safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . Adverse reactions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Adherence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
76 76 77 77 78 79 80 80 81 81 82 82 82 84 85 86 86 88 95
2
62 62 63
Section 11
Adherence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . General consideration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Adherence assessment and monitoring . . . . . . . . . . . . . . . . . . . . . . . Adherence to ART . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
96 96 96 97
Section 12
Post-exposure prophylaxis (PEP) . . . . . . . . . . . . . . . . . . . . . . . . . 102 Universal precautions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102 Procedure for ‘sharps injury’ or other exposure . . . . . . . . . . . . . . . . 103 Timing of prophylaxis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105 Post-exposure prophylaxis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105 PEP following alleged penetrative sexual abuse . . . . . . . . . . . . . . . 106
Section 13
Legal issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 108 Guidelines on HIV testing and treatment of orphans and vulnerable children . . . . . . . . . . . . . . . . . . . . . . . . 108 General statement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 108 HIV testing of children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 109
Section 14
Counselling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112 Pre-test counselling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112 Post-test counselling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113
Section 15
Disclosure to children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 116 Reasons for disclosing HIV status . . . . . . . . . . . . . . . . . . . . . . . . . . 116 Guidelines for disclosing HIV status . . . . . . . . . . . . . . . . . . . . . . . . 116 What is the right thing to say? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117
Appendices Appendix 1:
Interim revised WHO clinical staging of HIV/AIDS for infants and children . . . . . . . . . . . . 118 Appendix 2: Paediatric pain scales . . . . . . . . . . . . . . . . . . . . . . . . 120 Appendix 3A: ARV drugs and TMP/SMZ paediatric dosing chart for use in resource-constrained settings . . . . . . . . . . . . . . . . . . 124 Appendix 3B: Paediatric ARV and co-trimoxazole dosing . . . . . . 128 Appendix 4: ARVs for children – side effects and adverse events . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131 Appendix 5: Grading of adverse events . . . . . . . . . . . . . . . . . . . . 132 Appendix 6: Guidelines for adverse drug reaction (ADR) reporting . . . . . . . . . . . . . . . . . . . . . . . . . . . 134 Appendix 7: Adverse drug reaction and product quality problem report form . . . . . . . . . . . . . . . . . . . . . . . . 138
Acronyms and abbreviations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142
3
RESOURCES AND ACKNOWLEDGEMENTS Resources AIDS Helpline:
0800 012 322
Red Ribbon Resource Centre (for free booklets on ART):
(011) 880-0405
Department of Health (Cluster: HIV and AIDS, TB and STIs):
(012) 312-0121
Department of Social Development (National HIV and AIDS Co-ordinator):
(012) 312-7500
Acknowledgements The development of these guidelines required the collaboration of experts and professionals with in-depth experience in a wide range of matters impacting on the management of HIV-infected and HIVexposed children. The Department of Health wishes to acknowledge and thank all the contributors to this joint effort, as well as the Clinical Care Teams of the Cluster: Maternal, Child, Women’s Health and Nutrition and Cluster: HIV and AIDS. List of contributors Razia Bobat Mark Cotton Ashraf Coovadia Hoosen Coovadia Mandla Duma Tumi Funani Liesl Gerntholz Ameena Goga Glenda Gray Ashraf Grimwood Greg Hussey Prakash Jeena Stephanie Jones David Kalombo Leon Levin
Walter Loening Eloise Malan Michelle Meiring Harry Moultrie Helena Rabie Anne Robertson Nigel Rollins Paul Roux Haroon Saloojee H Simon Schaaf Gayle Sherman Vincent Thion Avye Violari Nomonde Xundu
INTRODUCTION These guidelines are intended to assist health care providers in the management of children who are HIV infected and/or affected, as outlined in the Comprehensive Plan for HIV and AIDS Care, Management and Treatment. In line with the Strategic Plan for HIV and AIDS 2000–2005, prevention of HIV infection and its early identification are dealt with in detail as they are issues of fundamental importance for everyone dealing with children. The approach adopted is that of the continuum of care, with a holistic patient focus in an integrated health system. The focus is at the primary level within the context of the District Health System being implemented throughout the country. The dynamic nature of the HIV and AIDS field will necessitate that these guidelines be regularly reviewed and updated in order to keep the health care providers informed of advances that impact on the management of the child. This will ensure that the highest possible quality of care is provided. It must be stressed that these guidelines should not be used to exclude any child from receiving treatment when needed.
FIGURES AND TABLES Figure 1
HIV testing guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . .
14
Figure 2
Clinical signs of HIV-infection . . . . . . . . . . . . . . . . . . . . .
17
Figure 3
Clinical signs or conditions that may suggest HIV-infection in children . . . . . . . . . . . . . . . . . . .
18
Table 1
Routine oral Vitamin A supplementation . . . . . . . . . . . . . .
21
Table 2
Treatment for worms . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
22
Table 3
Amoxycillin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
35
Table 4
Co-trimoxazole . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
35
Table 5
Ceftriaxone . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
36
Table 6
Co-trimoxazole prophylaxis . . . . . . . . . . . . . . . . . . . . . . . .
41
Table 7
Anti-tuberculosis drugs . . . . . . . . . . . . . . . . . . . . . . . . . . .
43
Table 8
Paracetamol . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
70
Table 9
Paracetamol and codeine phosphate . . . . . . . . . . . . . . . . . .
71
Table 10
Drug choices for children . . . . . . . . . . . . . . . . . . . . . . . . . .
82
Table 11
Reasons to move to second-line ART in children . . . . . . .
84
Table 12
Paediatric ARV regimens and routine monitoring during treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
87
Grading the severity of paediatric adverse reactions (PACTG) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
89
Table 14
Correlation between adherence and virological response to HAART . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
99
Table 15
Assessment of exposure risk, HIV status of source and recommendations for post-exposure prophylaxis (PEP) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
104
Recommended PEP drug regimen for adults . . . . . . . . . . .
105
Table 13
Table 16
SECTION 7: OTHER CONDITIONS AND Cryptococcal meningitis This presents with signs of meningitis, either acute or with a chronic headache. Often it presents with cranial nerve palsy and usually in older children. It may occur as a result of Immunologic Restitution Inflammatory Syndrome (IRIS). Suspect cryptococcal meningitis when these signs occur in any HIV-infected child. N .B .
When a lumbar puncture is done the CSF pressure should be measured. Always request laboratories to do India ink stain and cryptococcal antigen on all CSF specimens from HIV-infected children with suspected meningitis.
Other investigations ■ ■ ■
Chest X-ray Ophthalmologic assessment Fungal culture of blood and urine
Treatment All children with suspected cryptococcal meningitis need to be treated initially as inpatients: ■ Treat with amphotericin B (0.75–1.0 mg/kg, IV, once daily) for 14 days and/or until there is appropriate clinical improvement. Thereafter change to oral fluconazole (6–12 mg/kg per day, maximum 400 mg) to complete 8–10 week course. Acetazolamide and furosemide and serial spinal tap relieve CSF pressure.
Prevention of recurrence ■
62
After therapy, secondary prophylaxis should be continued indefinitely. Fluconazole (3–6 mg/kg per day, maximum 200 mg) may be effective. For adolescents receiving ART, maintenance fluconazole may be stopped if immune reconstitution occurs: CD4 count increases to between 100–200 cells. There is no evidence available to confirm that stopping maintenance therapy in children is safe.
OPPORTUNISTIC INFECTIONS Cytomegalovirus (CMV) infection Disseminated disease can present with hepatosplenomegaly, generalised lymphadenopathy, fever and respiratory involvement. Retinitis, CNS manifestations, and infection of the gastrointestinal tract are important additional manifestations. It may also manifest as part of IRIS. Diagnosis can be difficult as presence of antibodies to CMV does not necessarily imply infection. Histological diagnosis is the most helpful.
Treatment All children with CMV infection need to be treated as inpatients (tertiary): ■
Ganciclovir IV if available (10 mg/kg per day in 2 divided doses over 1–2 hours for 14–21 days, followed by lifelong maintenance therapy with 5 mg/kg per day, IV, 5 days per week). (Specialist team should make the decision whether to treat with ganciclovir.)
Disseminated infection with Mycobacterium avium complex (MAC) MAC usually presents with disseminated disease in children with HIV-infection. Patients may have pancytopaenia from bone marrow depression and have non-specific signs. Isolated organ disease, especially pulmonary, GIT or skin disease occur less commonly.
Diagnosis MAC may be isolated from blood (Bactec®), bone marrow, lymph node, and other fluids and tissues.
63
OTHER CONDITIONS AND OPPORTUNISTIC INFECTIONS Treatment All children need to be referred to a specialist centre for management. Treatment: combination of at least two drugs e.g. clarithromycin + ethambutol or azithromycin + ethambutol (clarithromycin 15 mg/kg/day orally 12 hourly, azithromycin 20 mg/kg/day orally 12 hourly, ethambutol 15–20 mg/kg/day orally once a day). Rifabutin (if available) or amikacin may be added. Ciprofloxacin may be of additional benefit. It is advisable to always use 3 or 4 drugs for disseminated disease. Most patients show substantial improvement within first 4–6 weeks. Therapy should be continued lifelong, irrespective of the extent of improvement. However, if on ART, MAC therapy can be stopped if CD4 percentage has been more than 15% for 6 months and ART has been continued for more than 12 months and the child is asymptomatic.
Toxoplasmosis Occurs rarely in children. Maternal toxoplasmosis should be sought. Usually presents with encephalitis, with focal neurological abnormalities occurring in association with headache. Outside of the CNS, ocular and pulmonary involvement is the most common.
Diagnosis Diagnosis may be made on blood and CSF serology. CSF PCR for toxoplasmosis may also be helpful, as is culture of the organism from blood or body fluids. CT scan usually reveals multiple bilateral, focal hypodense ring-enhancing lesions. Placental pathology is helpful if congenital toxoplasmosis is suspected.
Treatment ■
■
■
64
Depends on the extent of CNS involvement and should be individualised. In patients with extensive CNS damage palliative care is recommended. Pyremethamine, sulfadiazine, and leukovorin may be used if available. Management decisions will need to be made by a specialist team. Lifelong treatment is recommended for toxoplasma encephalitis.
HIV encephalopathy HIV-infected monocytes can cross the blood-brain barrier and thus infect the brain. Any part of the nervous system may be affected but in children it is predominantly the brain. It has been estimated that ±20% of HIV-infected children may be affected. HIV encephalopathy indicates advanced clinical disease. Diagnosis depends on the presence of at least one of the following findings for at least 2 months: ■ Failure to attain or regression of developmental milestones or loss of intellectual ability verified by standard developmental scale or neuropsychological tests. ■ Impaired brain growth, or acquired microcephaly demonstrated by head circumference measurements, or brain atrophy demonstrated by CT scan. ■ Acquired symmetric motor deficit manifested by two or more of the following: paresis, abnormal reflexes, ataxia or gait disturbances.
Management This is multidisciplinary and includes the provision of a child dependency grant to support the caregiver. Highly active antiretroviral therapy (HAART) may reverse some of the features of HIV encephalopathy.
Seizures These may occur in any neurological illness in the HIV-infected child. At times there is no other additional pathology.
Attention deficit disorder and hyperactivity This is commonly seen and requires specialist attention.
65
OTHER CONDITIONS AND OPPORTUNISTIC INFECTIONS
Wasting syndrome Wasting syndrome indicates advanced clinical AIDS.
Diagnosis In the absence of concurrent illness other than HIV-infection or poor access to food that could explain the following features: ■ persistent weight loss >10% of baseline OR ■ downward crossing of at least two of the following percentile lines on the weight-for-age chart (e.g. 95th, 75th, 50th, 25th, 5th) in a child 1 year and over OR ■ <5th percentile on weight-for-height chart on two consecutive measurements, more than 30 days apart PLUS ■ chronic diarrhoea (i.e. at least two loose stools per day ≥30 days) OR ■ documented fever (for ≥30 days, intermittent or constant)
Comment Wasting syndrome is a rigorously defined entity. A more practical approach to evaluating the severity of growth and nutritional status is to use the WHO guidelines (Appendix1).
Management ■ ■
66
For nutrition advice see Section 5 above. Highly active antiretroviral therapy (HAART) may reverse some of the features of HIV wasting syndrome.
Malignancies Non-Hodgkin’s lymphomata (NHL) are the most frequent group of malignancies in children with HIV-infection. These include CNS lymphoma and Burkitt’s lymphoma. Kaposi’s sarcoma is not uncommon in children with HIV-infection. It has been seen in infants and young children presenting with generalised lymphadenopathy and notably with black/purple lesions on the mucosa of the mouth or on the skin. In some centres it is more common than NHL. Other malignancies include leiomyoma and leiomyosarcoma.
Management ■ ■ ■
Refer all children to a specialist centre if malignancy is suspected. Manage the child in association with a paediatric oncologist. Treatment may include HAART and chemotherapy.
67
SECTION 8: PAEDIATRIC Palliative care is no longer defined as care for those in whom cure is not possible. The expanded definition being promoted in South Africa is: ‘The active, comprehensive care for the physical, emotional and psychosocial needs of the child and the family.’ It starts when any illness is first diagnosed and continues for the duration of the illness. If and when cure is no longer possible, palliative care will assume the major or total role in the care of the child. Pain and other symptoms are the physical component of palliative care. Pain may be difficult to identify in children. Appendix 2 contains helpful pain scales.
Painful conditions Conditions that cause pain are frequently found in children with HIV disease. HIV-associated conditions that can cause pain include: ■ Medical procedures ■ Severe and/or chronic bacterial, viral, fungal and parasitic infections ■ Encephalopathy with spasticity ■ Dental disease ■ Diffuse lymphadenopathy ■ Neuropathy ■ Chronic diarrhoea ■ Lymphoma
Recommendations for pain control in children ■ ■ ■
68
Establish the cause of the pain. Effectively manage the underlying condition. Developmental appropriate pain scales are available (see Appendix 2). Involve the parent/caregiver when assessing whether pain is present. If in doubt, treat the child and observe the response.
PALLIATIVE CARE ■ ■ ■
■ ■ ■
■
Pain caused by medical procedures should be anticipated and managed as for HIV-uninfected children. Give medication orally if possible. Give adequate regular analgesic doses, not ‘p.r.n.’ (as required) doses. Adequate analgesic doses allow children to sleep through the night. Assess pain at regular intervals (2–4 hourly). Anticipate side effects due to analgesic medication (e.g. constipation) and manage accordingly. Use opioids in doses that effectively control the pain. These doses do not usually result in addiction. When opioids are reduced or stopped, doses should be gradually tapered to prevent severe pain flare-up. Provide palliative care for dying children at home if possible; the local primary health-care service must be able to provide this care or assist NGOs who are providing this care, e.g. in providing essential drug supplies.
The ‘analgesic ladder’ Step 1 – Mild pain Step 2 – Moderate pain Step 3 – Severe pain
69
PAEDIATRIC PALLIATIVE CARE Step 1 ■ ■
Paracetamol, oral, 4–6 hourly, when required to a maximum of four doses daily Paracetomol syrup 5 ml/8 kg (In between dose for in between weights)
Table 8: Paracetamol Paracetamol 120 mg/5 ml syrup; 500 mg tablet Weight kg
Dose mg
6 to 10 kg 10 to 18 kg 18 to 25 kg 25 to 50 kg over 50 kg and adult
60 120 240 500 1000
Syrup 120 mg/5 ml 2.5 ml 5 ml 10 ml — —
Tab 500 mg
Approx Age years
— — — 1 2
3 to 12 months 1 to 5 years 5 to 8 years 8 to 14 years 14 years and older children
Ibuprofen, oral, 4–6 hourly with food, 4–10 mg/kg/24 hours. Do not exceed 500 mg per day. Not indicated for children under 5 years.
Step 2 ■
70
Add codeine phosphate syrup to Step 1.
Table 9: Paracetamol and codeine phosphate Weight
2–<3 kg 3–<6 kg 6–<10 kg 10–<12 kg 12–<16 kg 16–<25 kg
Age*
Chronic pain Paracetamol 4–6 hrly
0–3 months
2 ml 2.5 ml 2.5–5 ml 5–7.5 ml 7.5–10 ml 10–12.5 ml
3–12 months 12 up to 24 years 24 up to 48 years Over 48 months
Chronic severe pain Add codeine phosphate syrup 4 hrly Min Max dose dose 0.2 ml 1.0 ml 0.3 ml 2.0 ml 0.5 ml 3 ml 1.0 ml 5 ml 1.5 ml 6 ml 2 ml 8 ml
* Use age only if weight not available. Codeine phosphate syrup is given 4 hourly, 0.5 mg/kg (syrup 25 mg/ 5 ml). This can be increased to 1–2 mg/kg per dose. It is doctor initiated.
Step 3 ■ ■
N .B .
Paracetamol or ibuprofen can be used with morphine in Step 3. Morphine is doctor initiated.
There is no maximum dose for morphine – dose is adjusted upward according to the effect on pain. Morphine is given orally 4 hourly according to severity of the pain. ■ ■
Start with 0.1–0.3 mg/kg/dose Adjust the dose and frequency according to the effect on pain.
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PAEDIATRIC PALLIATIVE CARE
Breakthrough pain Breakthrough pain is pain that occurs before the next regular dose of analgesia. This is due to an inadequate regular dose. ■ It is recommended that the full dose equivalent to a 4-hourly dose of morphine be administered for breakthrough pain, but it is important that the next dose of morphine be given at the prescribed time, and not be delayed because of the intervening dose. ■ The dosage should be titrated upward against the effect on pain in the following way: - Add up the amount of ‘breakthrough morphine’ needed in 24 hours. - Divide this amount by 6 (the number of 4-hourly doses in 24 hours) - The next day increase each dose by that amount. Example: Patient gets 10 mg morphine every four hours. 3 x 10 mg = 30 mg ■ The patient has 3 episodes of breakthrough pain. 30 mg ÷ 6 = 5 mg ■ The regular 4 hourly dose of 10 mg will be increased by 5 mg. i.e. 10 mg + 5 mg = 15 mg ■ The increased morphine dose will be 15 mg 4 hourly. ■
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Referral ■ Uncontrolled pain ■ Pain uncontrolled by Step 1 if no doctor available ■ Severe emotional or other distress which may aggravate the perception of pain Notes regarding morphine use: ■ Use lower starting doses for younger children (within the age range). ■ Allow 24 hours before considering a dose increase; increase dose by 30–50%. ■ No maximum dose – titrate to analgesic response. ■ If patient has pain within dosing interval, extra ‘breakthrough’ doses must be prescribed. ■ Intravenous morphine should only be used in a hospital or hospice setting. ■ Opioids have other advantages i.e. they can alleviate intractable diarrhoea and cough.
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SECTION 9: CARING FOR THE General management The management of a child who is imminently terminal (death suspected to occur within a few days or weeks) should include: ■ Relieving distress in the child ■ Treating easily manageable complications ■ Limiting hospital admissions ■ Reducing the duration of hospital stay ■ Ensuring that parents/caregivers are adequately counselled, and that staff are sympathetic to individual needs The aims are as follows: Maintain good quality of life. ■ Keep the patient as comfortable as possible. ■ Provide emotional support to a dying child and the grieving family. ■
Supportive care The decision to begin supportive (terminal) care is difficult and should be made on a case-by-case basis preferably by a team of professionals with the family’s involvement. Once this decision has been made, it should be clearly communicated to other health-care workers involved in the care of the child. This communication can take the form of a letter, which the family may be able to present to other health workers.
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TERMINAL CHILD Indications for inpatient management ■
Hypoxia and respiratory distress IV/nasogastric fluid requirement (beware prolonged use of nasogastric tubes) ■ Carer(s) unable to cope at home Investigations should be kept to a minimum. They should only be done if it is believed that doing these will shorten the duration of hospital stay or in some way contribute to the child’s ultimate comfort. Simple oral antibiotic therapy may be started, where it is thought that a course of antibiotics could shorten the duration of discomfort or hospital stay. ■
Home care ■ ■ ■
■ ■
Home care of the terminally ill child should be encouraged if the parent(s) or caregiver(s) are able to care for the child at home. There should be no need for intravenous fluids or other intensive treatment. Reassure the parent(s)/caregiver(s) that the child has not been abandoned by the health service, and that they can re-visit the clinic and have the child readmitted to the hospital at any time. Discussions and decisions regarding the institution of home care should be clearly recorded in the child’s records. The possibility of chronic/terminal care at a hospice facility should be discussed with parent(s)/caregiver(s) if there are inadequate resources for the care of the child at home.
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SECTION 10: ANTIRETROVIRAL Introduction Every HIV-infected child has the right to comprehensive therapy, which includes ART. It can improve the morbidity and age-related mortality from HIV-infection and in addition improve the quality of life dramatically. Antiretroviral drugs (ARVs) inhibit the process of replication at the level of the enzymes involved. ■ Nucleoside reverse transcriptase inhibitors (NRTIs) attach to the RNA strand and shorten the transcription of DNA from RNA by the reverse transcriptase enzyme. ■ Non-nucleoside reverse transcriptase inhibitors (NNRTIs) inhibit the reverse transcriptase enzyme directly. ■ Protease inhibitors (PI) prevent the new formation of viral particles by inhibiting the protease enzyme. These ARV drugs work best if used in combination of 3, e.g. 2 NRTIs and either an NNRTI or a PI. Highly active ART (HAART) is an ARV combination regimen that can reasonably be expected to reduce the viral load to undetectable levels (i.e. <50 copies/ml) when treating patients with no prior use of ARVs. (Also referred to as ARV-naïve.) Absolute eradication of the virus is not achievable as it is also found in lymphoid tissue or the central nervous system, where the ARVs might not reach. If the treatment is stopped or adherence to medication is poor, the virus will replicate to high levels again. Viral genetic material can readily change (mutate) during replication, particularly if the blood level of the ARV is too low to be effective. Consequently there is a strong possibility that the virus then becomes resistant to that drug.
N .B .
76
It is essential to ensure that adequate levels of the drugs are maintained in the body to prevent the development of resistant strains. It is extremely important that patients are adherent to their medication.
THERAPY (ART) Issues related to paediatric ART ■ ■ ■ ■ ■ ■ ■ ■ ■
Children may need special formulation of the drugs, e.g. solutions. Very unpleasant taste can make administration problematic. A caregiver needs to be present constantly to administer the drug. Adherence thus becomes a serious issue. Adjustment of the dosage in relation to the child’s growth and organ maturation. ART needs supportive health care, family and community environment. If ART is initiated without such support, it is likely that there will be failure and emergence of resistant viral strains. Guidelines for administering ART to children are different from those of adults. There are relatively few formulations of ARVs available for children.
Principles for ART ■ ■
■ ■ ■ ■ ■ ■ ■ ■
Clinical indications may override ‘normal’ CD4 counts. Do not start too early (for example when the CD4 count is normal and the child is asymptomatic) or too late (when the immune system is irreversibly damaged). Choose drug regimens with proven efficacy. Choose drugs that are unlikely to have serious side effects. The simplest regimens possible should be chosen. Ensure constant availability of ARVs. Ongoing support of the patient and family to maintain adherence. It is important to be vigilant for drug interactions and resistance, which may reduce the potency of ARVs. Patients need to be monitored for adverse reactions. Creative solutions must be found to make sure that vulnerable children, e.g. orphans/children whose parents are ill, get access to ARVs if indicated, e.g. intervention by social worker, peer counsellor or school.
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ANTIRETROVIRAL THERAPY (ART) ■ ■
For a good response at least 95% of the ARVs need to be taken. (Adherence is the key to successful therapy.) A minority of patients may not respond to ART and continue to deteriorate despite good adherence. (This may occur especially in those who are severely ill before starting ART. Underlying opportunistic infections should be sought.)
Continuity of care units ■ ■
■
■ ■ ■
■
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In the initial provision of ART, children will be cared for in accredited units. These can be defined as units in primary, secondary or tertiary institutions, where expertise in managing children with ART exists and where ARV stocks are available. Such units will act as resources to train members of staff from other units, so that appropriate care through the health service is provided as quickly as possible. Initially ART delivery will occur at higher levels of health care and will be doctor-initiated as this is where expertise exists currently. As the program expands, provision of this treatment will occur at all levels by doctors and nurses. Stable patients will be referred to those primary care facilities where the necessary expertise, drug stocks and nutritional support are available. Training at all levels of care needs to be implemented immediately so that appropriate referral can occur. Eventually, tertiary care centres will become referral centres for complicated cases and/or ongoing research.
Function of units ■ ■ ■ ■ ■
■ ■
■
■
Staging of children to assess eligibility for ART should occur where the child presents. Possible candidates for ART are then referred to the closest accredited unit. Patients are then re-evaluated for their eligibility for ART. If found not to be eligible, the patient may be referred back to PHC for ongoing management and re-evaluation at regular intervals. At PHC level every effort must be made to maintain the health and nutrition of the child including provision of co-trimoxazole prophylaxis for PCP. As soon as the disease has been found to have progressed, referral for ART must take place immediately. Patients on ART are followed up by the treatment unit for at least 6 months. After this the child may be referred back to the PHC facility for further care. Ongoing care for children on ART includes: - Monitoring treatment adherence - Providing the necessary ARVs on a monthly basis - Referral for laboratory investigations and re-assessment as required - Assessment for drug side effects or other complications - Routine care for immunisation and weight monitoring - Management of intercurrent infections - Provision of co-trimoxazole prophylaxis for PCP - Counselling and support of the parents/caregivers - Arranging for palliative care where appropriate with the support of NGOs The child’s home is an important unit that must not be overlooked. Home visits together with a social worker must be encouraged.
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ANTIRETROVIRAL THERAPY (ART)
Requirements before ART is implemented Within the health-care system ■ ■ ■ ■ ■ ■
Supplies of drugs are assured. Staff have the training and skill to manage children on ART. Monitoring mechanisms exist. Supportive processes are in place and active. Effective and informative counselling services are in operation. Management, clinical staff and pharmacists at primary care level and at first referral level must receive adequate and appropriate training.
Within the child’s family/environment ■
Parents/caregivers/children understand: - That a responsible individual and a treatment supporter must be identified to administer the drugs every day on a long-term basis - That ART is life-long therapy - The prognosis of the condition - The side effects of the medicines and their mode of action
Information recording The details of all patients undergoing ART will be captured in a database consistent with the patient information system (PIS) developed by the NDoH. Examples of forms can be obtained. N .B .
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Ensure that data forms are filled in correctly. Accurate information recording is essential for the programme.
Goals of ART The goal of ART for children is to increase survival and decrease HIV-related morbidity and mortality. ■ The child’s CD4 count should rise and remain above the baseline count. ■ The child’s viral load should become undetectable (<400 copies/ml or <25 copies/ml depending on the assay) and remain undetectable on ART.
Eligibility for ART Patients must satisfy clinical and social criteria before being accepted for treatment.
Clinical criteria ■ ■ ■ ■
Confirmation of diagnosis of HIV-infection. Recurrent (>2 admissions per year) hospitalisations or prolonged hospitalisation (>4 weeks) for HIV-related illness OR The patient satisfies the provisional WHO Stage III/IV disease (see Appendix 1) OR For relatively asymptomatic patients, one can consider CD4 percentage <20% if under 18 months or <15% if over 18 months.
Social criteria These criteria are extremely important for the success of the programme and need to be adhered to – the principle is that adherence to treatment must be at least probable. ■ At least one identifiable caregiver who is able to supervise the child for administering medication. (All efforts should be made to ensure that the social circumstances of vulnerable children, e.g. orphans, are addressed so that they too can receive treatment.) ■ Disclosure to another adult living in the same house is encouraged so that there is someone else who can help with the child’s ART.
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ANTIRETROVIRAL THERAPY (ART)
Treatment of mothers/caregivers/other family members ■ ■ ■
Always ask about the caregiver’s health, and the health of other members of the family. Ensure that mothers and other family members access medical care timeously, including ART if needed. Where possible HIV-positive mothers and caregivers requiring medical attention should be attended at the same time as the children to decrease the number of clinic visits, costs and absences from work.
ARV drug choices for children Table 10: Drug choices for children Regimen First-line
Second-line
6 months up to 3 years stavudine (d4T) lamivudine (3TC) Kaletra® zidovudine (AZT) didanosine (ddI) nevirapine/efavirenz*
Over 3 years and >10 kg stavudine (d4T) lamivudine (3TC) efavirenz (EFV) zidovudine (AZT) didanosine (ddI) Kaletra®
*Efavirenz if age >3 years, nevirapine if <3 years See Appendix 3 for details.
General comments ■ ■
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All infants under 6 months of age who require ART should be started on treatment under specialist supervision. Stavudine solution requires refrigeration. If no fridge is available, stavudine capsules may be opened and dissolved, and the required amount administered to the child. The rest can be discarded. If the caregiver experiences difficulty with stavudine capsules, zidovudine suspension may be used instead.
■
Switch to tablets or capsules from syrups or solutions as soon as possible. ■ Children may occasionally need to change a drug from the first-line regimen to one from the second-line regimen, because of intolerance or a serious adverse reaction. Swapping limits the patient’s second-line treatment options. The decision to swap must be made by a doctor with antiretroviral experience. Swapping of a single drug should only be done if there is full viral suppression, failing which the whole regimen may need to be changed. ■ If intolerance develops to ritonavir or lopinavir/ritonavir (Kaletra®), switch to nelfinavir. ■ Lopinavir/ritonavir needs to be kept cool (<25ºC). ■ Didanosine (ddl) must be taken alone, on an empty stomach, at least an hour before (or 2 hours after) a meal. Tablets should be dissolved in at least 30 ml of water. It is important to use 2 tablets of didanosine to obtain sufficient antacid buffering, e.g. if child needs 100 mg, prescribe 2 x 50 mg tablets. ■ Abacavir may be used if adverse events occur with other NRTIs. ■ Drugs not listed in the first- and second-line regimens but mentioned above, e.g. ritonavir, nelfinivir, saquinavir, abacavir, nevirapine, should be available at all tertiary-care centres. ■ See Table 11 for reasons for moving from first- to second-line ART. For dosage and frequency information on ARVs see Appendix 3.
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ANTIRETROVIRAL THERAPY (ART)
Move from first- to second-line therapy Consider a move to second-line therapy under the conditions listed in Table 11. For practical purposes, at first and second level it is primarily the clinical features that are of importance.
Table 11: Reasons to move to second-line ART in children Clinical
Immunological
Virological
■
■
■
■
■
■
■ ■
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Lack of growth or decline of growth in a child showing initial response to treatment despite adequate intake Loss of neurodevelopmental milestones or development of HIV encephalopathy New evidence of Stage III/IV disease (not IRIS: see page 93) Recurrence of prior opportunistic infections e.g. oral candidiasis that is refractory to treatment
■
■
No improvement in CD4 value despite therapy (at least 24 weeks) Confirmed return of CD4 percentage (repeated within one month) to baseline or below before starting therapy in the absence of concurrent illness to explain CD4 decline More than 50% decline in CD4 percentage from peak (confirmed within one month) in the absence of concurrent illness to explain CD4 decline
Rebound of viral load to baseline (a detectable viral load may be tolerated in children, providing that growth and elevated CD4 count are sustained)
Short episodes of pneumonia, lower respiratory tract infection and gastroenteritis should not be regarded as clinical failure. Presentation with TB while on first-line therapy is NOT an indication to switch to second-line therapy even though it can present as progression to Stage III/IV disease.
N .B .
■
Immune reconstitution disease may present as a new Stage III/IV event. However, this will usually be associated with a CD4 count and/or percentage, which have improved over time. This is NOT an indication to switch to second-line therapy.
■
Changing from first- to second-line ART is a decision that is undertaken only after careful consideration. It should not be rushed into before considering possible improvements in managing therapy at home.
■
First check adherence: if it is not possible to improve adherence, attempt directly observed therapy (DOT) with a health-care worker or the trusted ‘other’ family member or friend identified under ‘social criteria’ on page 81. Ensure that second-line therapy does not include any drugs used in first-line therapy. It is essential that switching ARV regimens is done in consultation with a paediatrician with ARV experience.
■ ■
Concomitant tuberculosis (TB) TB occurs commonly with HIV. There are two scenarios to consider:
1. Child presents with TB before starting ART ■
■
■
■
Complete TB therapy if possible before starting ART or delay ART for at least 2 months. (In severe cases it may be necessary to start ART even sooner.) If the child has failed the nevirapine vertical transmission programme or is less than 3 years old or weighs less than 10 kg, use ritonavir as the third drug. If the child was not on the nevirapine vertical transmission programme and is more than 3 years old and weighs more than 10 kg, use efavirenz as the third drug. Monitor ALT monthly if ARV and TB treatment given concurrently.
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ANTIRETROVIRAL THERAPY (ART) 2. Child develops TB while on ART ■ ■ ■ ■ ■
If the child is on lopinavir/ritonavir or nelfinavir, then switch to ritonavir. If the child is on nevirapine, and is less than 3 years old or weighs less than 10 kg, switch to ritonavir. If the child is on nevirapine, and is more than 3 years old and weighs more than 10 kg, switch to efavirenz. If the child is unable to tolerate the large number of drugs, ART may have to be interrupted until TB therapy has been completed.* Monitor ALT monthly.
* Discuss all cases with a paediatrician with ARV experience, before interrupting therapy.
Dosage of ART Provide ARV dosages according to dosing table in Appendix 3. In older children or adolescents ensure that maximum doses for adults are not exceeded.
Monitoring for efficacy and safety This will have to be carried out at the first referral level, where feasible, in preparation for review of the child at the ARV treatment unit.
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Table 12: Paediatric ARV regimens and routine monitoring during treatment Regimen d4T/3TC/lopinavir + ritonavir (Kaletra®)
d4T/3TC/EFV
Test ■ CD4 ■ VL* ■ Fasting cholesterol ■ Fasting glucose ■ Fasting triglycerides** ■ ALT*** and FBC
Frequency ■ Staging, 6-monthly ■ Baseline, 6-monthly ■ Baseline, 6-monthly ■ Baseline, 6-monthly ■ Baseline, 6-monthly ■ Baseline, 6-monthly
■
CD4 VL ALT and FBC
■
■
■
CD4 VL FBC
■
ALT
■
■ ■
ddI/AZT/NVP
■ ■
■ ■
■ ■
Staging, 6-monthly Baseline, 6-monthly Baseline, 6-monthly Staging, 6-monthly Baseline, 6-monthly Baseline, then monthly for 3 months, then 6 monthly (with CD4 and viral load) thereafter Baseline, week 2, 4 and 8, thereafter 6 monthly
(continues on following page.)
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ANTIRETROVIRAL THERAPY (ART) Regimen ddI/AZT/EFV
Test ■ CD4 ■ FBC
■
ddI/ABC/EFV
■ ■ ■
ALT CD4 ALT FBC
Frequency ■ 6-monthly ■ Baseline, then monthly for 3 months, then 6 monthly (with CD4 and viral load) thereafter ■ 6-monthly ■ 6-monthly ■ 6-monthly ■ 6-monthly
Staging = initial testing (screening) for all patients when being referred for antiretroviral therapy. Baseline = testing for ART eligible patients, at initiation of ART. * VL = viral load **For practical purposes it is more convenient to take random samples, and fasting samples if the random sample is abnormal. *** ALT = liver function test It is at the discretion of the initiator of ART to decide whether monitoring for efficacy or toxicity be done outside of the routine schedule. N .B .
For all regimens a baseline serum lipase will be useful. This may be repeated if there is clinical indication to do so.
Adverse reactions Also see Appendix 4. ARVs commonly have side effects and occasionally serious adverse events (SAEs) can occur. Side effects are thought to be less common amongst children than amongst adults. Side effects are those reactions to drugs that are known to occur and would be listed in the package insert, e.g. nausea, abdominal pain and vomiting. Life-threatening episodes should be referred to as serious adverse events.
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Mild side effects include: ■ Mild nausea, vomiting, diarrhoea ■ Dizziness (efavirenz) ■ General malaise ■ Peripheral neuropathy ■ Nail discolouration Generally it is recommended that patients continue with the medication if the side effects are mild.
Table 13: Grading the severity of paediatric adverse reactions (PACTG) Laboratory test abnormalities Grade 2 toxicity
Grade 3 toxicity
Grade 4 toxicity
Haemoglobin 9.0–9.9 g/dL 3 months up to 2 yrs
7.0–8.9 g/dL
<7.0 g/dL
Cardiac failure secondary to anaemia
Haemoglobin 2 years and over
10–10.9 g/dL
7.0–9.9 g/dL
<7.0 g/dL
Cardiac failure secondary to anaemia
Absolute neutrophil count
0.75–1.2 x109/L
0.4–0.749 x 109/L
0.25–0.399 x 109/L
<0.25 x 109/L
ALT (SGPT)
1.1–4.9 x upper normal limit
5.0–9.9 x upper normal limit
10.0–15.0 x upper normal limit
>15 x upper normal limit
Triglycerides
–
1.54–8.46 mmol/L
8.47–13.55 mmol/L
>13.56 mmol//L
Cholesterol
–
4.43–12.92 mmol/L
12.93–19.4 mmol/L
>19.4 mmol/L
Item
Grade 1 toxicity
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ANTIRETROVIRAL THERAPY (ART) Clinical adverse events Grade 4 toxicity
Grade 1 toxicity
Peripheral neuropathy
Diagnosis of peripheral neuropathy is difficult in children. Screen motor function against milestones and refer to specialist if peripheral neuropathy is suspected. Vesiculation Exfoliative Diffuse OR ulcers dermatitis OR maculoStevenspapular rash Johnson OR dry syndrome OR desquamation erythema multiforme OR moist desquamation
Skin rash/ dermatitis*
Grade 2 toxicity
Grade 3 toxicity
Item
* See box below for rash due to nevirapine. Adverse reactions will be graded according to the Paediatric AIDS Clinical Trial Group (PACTG) grading.
Action on grading Also see Appendix 5. ■ Grades 1 and 2 – client remains on therapy. Repeat the test. Reassess clinically within 2 weeks. ■ Grade 3 – test should be repeated within 1 week and if still Grade 3, stop ALL ARV drugs and seek expert medical advice. ■ Grade 4 – Stop all drugs immediately and seek specialist advice. If the patient restarts therapy after the event has resolved, and the same Grade 4 event recurs, appropriate changes or withdrawal of ART may need to be made. A rash in a child on nevirapine with mucosal involvement OR associated with fever/systemic symptoms/derangement in liver functions should be treated as a Grade 4 toxicity. All ARVs should be stopped immediately. Patients at primary care should be referred to a specialist for advice regarding restarting ARVs. The patient should never be rechallenged with nevirapine.
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Lactic acidosis All nucleoside analogues have been associated with lactic acidosis. It is a rare but potentially life-threatening metabolic complication of treatment. The pathogenesis is believed to involve drug-induced (NRTI) mitochondrial damage. Initial symptoms are variable; cases have occurred as early as 1 month and as late as 20 months after starting therapy. It is usually associated with combination ddI and d4T. N .B .
There are no good screening tests to detect lactic acidosis and a high index of clinical suspicion should be maintained. Clinical features: ■ Generalised fatigue, weakness ■ Gastro-intestinal symptoms (nausea, vomiting, diarrhoea, abdominal pain, hepatomegaly, anorexia, and/or sudden unexplained weight loss) ■ Respiratory symptoms (tachypnea and dyspnoea) ■ Neurologic symptoms (including motor weakness) Laboratory abnormalities: Hyperlactataemia (>2mmol/L) ■ Increased anion gap [(Na + K) - (Cl + HCO3); normal <15] ■ Elevated aminotransferases, CPK, LDH, lipase, and amylase ■ Microvesicular steatosis is seen on histology of the liver ■
N .B .
Discuss management of the patient with a treatment expert. ART should be discontinued in patients with clinical features. Management: Therapy is primarily supportive (fluid, bicarbonate administration and respiratory support). ■ Administration of riboflavin, thiamine and/or L-carnitine has been reported by some to have benefit in uncontrolled case reports. ■ Symptoms associated with lactic acidosis may continue or worsen following discontinuation of ART. ■
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ANTIRETROVIRAL THERAPY (ART) Hepatotoxicity due to nevirapine Hepatotoxicity may occur mainly in the first 8 weeks after starting therapy. In the initial phases of therapy ALT should be done frequently (see Table 12). The patient may present with nausea, vomiting, right upper quadrant tenderness and jaundice if severe. Management Grade the level of toxicity as on Table 13. ARVs should be stopped if the toxicity is Grade 3 or 4. N .B .
Skin rash associated with nevirapine toxicity may occur in association with liver dysfunction. Always check liver function tests if skin rash occurs (see above).
Lipodystrophy syndrome HIV-associated lypodystrophy includes fat loss and/or fat accumulation in distinct regions of the body: increased fat around abdomen, buffalo hump, breast hypertrophy, and fat loss from limbs, buttocks and face. Other manifestations: insulin resistance, hyperglycaemia, hypertriglyceridaemia, hypercholesterolaemia and low HDL levels. These individuals are at risk of type 1 diabetes mellitus and coronary artery disease. Association with ARVs: Usually occurs in patients who have been on long-term therapy. Lipodystrophy is more common in individuals taking stavudine or protease inhibitors. Management There are no established methods for treating lypodystrophy. Encourage exercise to reduce fat accumulation. Some patients improve if switched from a protease inhibitor to an NNRTI. Insulin resistance can be improved with anti-diabetic agents. Lipoatrophy may improve if d4T or AZT is replaced with abacavir. Statins and/or fibrates are effective at lowering cholesterol and triglyceride levels. However drug interactions between statins and ARVs may occur.
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N .B .
■
■
■
If there is a need to discontinue ART, it is advisable to discontinue all ARVs rather than continuing with one or two agents alone. When a patient discontinues an NNRTIcontaining regime, attempt to continue the NRTI component for 2 days after stopping the NNRTI. (For example, if NNRTI-related hepatotoxicity is suspected.) Adverse events should be recorded and reported regularly to the National HIV and AIDS Cluster. Serious adverse events (SAEs) should be reported within 48–72 hours (Grade 4 or death) to the Medicines Control Council. Adverse event forms on yellow paper will be made available at all centres. (Appendix 7) After the patient has recovered from the adverse event it may be possible to recommence therapy with a different regimen. Decision to recommence therapy should be done in consultation with a treatment expert.
Important drug interactions There are multiple opportunities for serious drug interactions. Therapists are advised to scrutinise package information and seek advice if uncertain.
Immune reconstitution inflammatory syndrome (IRIS) This is a paradoxical clinical deterioration after starting ART. It is due to the improving immune system interacting with organisms that have colonised the body during the early stages of HIV-infection. Causes A wide range of pathogens may induce IRIS including Mycobacterium tuberculosis (MTB), BCG, Mycobacterium avium complex, Mycobacterium leprae, Cryptococcus neoformans, Aspergillus fumigatus, Aspergillus terreus, Candida albicans, Pneumocystis jerovici, CMV, JC virus, human herpes viruses, human papilloma virus and hepatitis B and C viruses (HBV, HCV).
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ANTIRETROVIRAL THERAPY (ART) Presentation IRIS usually presents during the first 6 weeks after starting ART. Clinical presentations vary and depend on the causative organism and the organ-system that is colonised. For example IRIS caused by MTB may present with high fever, lymphadenopathy, worsening of the original tuberculous lesion, and/or deteriorating chest X-ray features including the development of a miliary pattern or pleural effusion. Management Includes specific antimicrobial therapy e.g. TB treatment for IRIS caused by MTB. In severe reactions glucocorticosteroids and/or temporary discontinuation of HAART may help.
BCG adverse events Adverse events related to BCG immunisation have also been reported during immune reconstitution. These include: ■ Abscess at the site of injection 10–15mm ■ Lymphadenitis (>1.5cm) (lymphadenopathy may also occur at other sites e.g. supraclavicular and cervical) ■ Suppurative lymphadenopathy in association with BCG injection ■ Disseminated BCG disease (indicated by failure to thrive, fever, hepatosplenomegaly) ■ Osteitis ■ Skin and eye reactions including erythema nodosum, lupus vulgaris and iritis
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If these reactions are noted, it is important to notify the authorities on a vaccine adverse event form. If an abscess is present, this should be drained to avoid sinus formation. Pus may be sent for TB culture with reference to the fact that a suspected BCG reaction has occurred. In all HIV-infected children with BCG reaction, treatment with INH (20 mg/kg/day), rifampicin and ethionamide (25 mg/kg) should be commenced for a period of 6 months. BCG is PZA resistant, hence the choice of drug regimen. Single anti-TB drugs are usually only available at hospital level, and the patient should be referred appropriately.
Adherence See Section 11 for details. Adherence greater than 95% will ensure a good virological response and prevent the emergence of viral resistance. Good adherence can be achieved with regular education and support. Adherence may be monitored using diary cards, medication check and other measures. All efforts should be made to encourage this level of adherence.
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SECTION 11: ADHERENCE General consideration Although this section was originally written with adult patients in mind, the difficulties associated with ART for infants and children are highlighted. Adherence to ART is essential to avoid development of drug resistance. It is not possible for health-care providers to reliably predict which caregivers or individuals will be adherent to their treatment plan, as adherence does not correlate with gender, cultural background, socio-economic or education level, or language barriers between provider and patient. It is therefore essential to provide all caregivers with a comprehensive plan to support adherence. Several strategies need to be applied and all members of the health-care team, as well as family and possibly even community-based support groups need to be involved.
Adherence assessment and monitoring Experience has shown that adherence decreases as time progresses. Monitoring and support of adherence is essential. See the list below for some factors affecting adherence to paediatric ART. A trusting relationship between the patient and caregiver with members of the health-care team is essential. Optimal adherence requires full participation by the health-care team. N .B .
Every interaction with the patient and caregiver provides an opportunity for reinforcing the absolute need for adherence. Some important factors diminishing adherence in children ■ Drug side effects and adverse events ■ Intercurrent illness ■ Caregiver illness or otherwise occupied ■ Patient resistance to taking medicines – ritonavir alone or in combination with lopinavir has a very bitter taste ■ Drug stock-outs ■ Change or absence of patient’s nurse or doctor ■ Frequent daily doses – e.g. twice or three times per day
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Supportive and non-judgmental attitudes and behaviours will encourage patient/caregiver honesty about adherence and problems. If adherence problems are noted at a regular follow-up visit, we need to try to contact the family between clinic visits to ensure that there are no problems regarding regular diarising of the treatment. It is also important to remind the caregiver to report any troublesome side effect or illnesses (e.g. investigate new barriers such as transport problems, more frequent visits, get support of family/friends, review counselling). ARV stock-out should never occur; this is an important disincentive for the patient to continue to collect drugs regularly. If the staff member who normally deals with the child is planning a move or vacation, the caregiver needs to be informed of that and reassured that the therapy will continue. Sub-optimal adherence calls for intensified support and further counselling. This is best done by means of a home visit. For all health-care team members, specific training regarding ART and adherence should be offered and updated periodically.
Adherence to ART â&#x2013;
Success of ART depends on tablet-taking behaviour. Ideal adherence means a patient must take more than 95% of their doses (i.e. missing less than 3 doses in a month). â&#x2013; If a patient is taking less than 95% of their doses, they are at risk of developing viral resistance and ultimately virological failure. See Table 14 for correlation between adherence and virological response. â&#x2013;
N .B .
Patients taking <80% of their doses are unlikely to have any durable virological suppression and should be targeted for adherence improvement urgently. At every follow-up visit this must be reinforced.
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ADHERENCE Strategies to promote adherence ■ ■ ■ ■ ■
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Spend time and have multiple encounters to explain goals of therapy and need for life-long adherence. Consider monitoring of medications such as co-trimoxazole or any other drug that is being given prior to ART initiation. Negotiate a treatment plan that the caregiver and patient can understand and to which he/she commits. Encourage disclosure to the child regarding his/her HIV status. Encourage disclosure to family or friends who can support the treatment plan. Adherence is likely to fail if the family is unaware of the problem. Inform caregiver and patient of potential side effects – severity, duration and coping mechanisms. Establish ‘readiness’ to take medications before ART initiation. Provide adherence tools where available: written calendar of medications, pill boxes. Encourage use of alarms, pagers or other available mechanical aids for adherence. Link schedules to daily activities such as mealtimes or tooth brushing. Avoid adverse drug interactions; there must be full disclosure of over-the-counter drugs and traditional medicines. Anticipate, monitor and treat side effects. Include adherence discussions in support groups. Develop links with community-based organisations to support adherence. Encourage links with support groups. Create links with patient advocates.
Table 14: Correlation between adherence and virological response to HAART Adherence to HAART* Viral load <400 copies/ml >95% adherence 78% 90% to 95% adherence 45% 80% to 90% adherence 33% 70% to 80% adherence 29% <70% adherence 18% *(number of doses dispensed minus tablets returned) over (number prescribed) e.g. (30-5)/28=25/28=0.9 (90%)
Basic adherence package at initiation Pre-treatment ■ Pre-treatment information and education as per visit schedule. ■ Caregiver and/or patient are introduced to therapeutic counsellor and patient advocate, if available and agreed to or nominated by patient, and home visit is arranged. ■ Monitoring co-trimoxazole prophylaxis compliance for one month prior to commencing therapy. (This is not to be used to exclude people from ART. It is meant to reinforce daily medication taking behaviour from the outset, and identify potential problems before starting ART). On treatment At each visit: ■ ART pill or syrup returned needs to be counted or estimated (% doses missed). This is the ideal but this depends on the clinic load and capacity to undertake this intensive activity. Adherence goal is >95% doses taken. Patients with adherence <80% require increased adherence support (see following page). ■ Tablet/syrup count/estimate may be done before the patient sees the health-care provider, and the count reviewed by the health-care provider during the early/initial visits to evaluate adherence. This does take up time and might not be possible at all sites all the time.
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Missed or late clinic visits should trigger concerns about adherence. Routine adherence discussion/education with counsellor is of value. This should be an open-ended discussion, with time for questions and repetition. Feedback from therapeutic counsellors to the rest of team is important to get a better profile of patients and their environment. Encourage caregiver participation in a support group. Continue monthly visit with therapeutic counsellors for first three months and quarterly thereafter. Arrange regular community visits by patient advocates.
Step-up adherence package for people with reduced adherence or virological failure This applies to all those whose adherence is less than 80% at any visit. (See Table 14.) ■ The therapeutic counsellor/nurse or doctor needs to re-educate the patient and caregiver (and their ‘buddy’) about the importance of adherence. The long-term benefits need to be re-emphasised. ■ Evaluate the support structures in place. Are they appropriate? How can they be improved? What other options are there? ■ Consider the use of pillboxes and/or daily dosing diary. ■ Insist on participation in a support group or link with a patient advocate. ■ Consider doing a psychological profile. ■ Check family situation (through social worker and therapeutic counsellor). ■ Increase home visits by therapeutic counsellors/patient advocates to daily or weekly at a minimum (spot pill counts to be done at home). ■ Consider directly observed therapy for an agreed period.
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SECTION 12: POST-EXPOSURE Most patient care does not involve any risk of HIV transmission. Each service requires a senior staff member responsible for universal precautions and handling accidental injuries.
Universal precautions Universal precautions are simple infection control practices used at all times in the care of all patients. The aim is to reduce the risk of transmission of blood-borne infections.
Some preventive measures ■
Cuts and sores should always be covered. Whenever hands are contaminated with body fluids, they should be washed thoroughly with soap and warm water for at least 10 seconds. ■ Gloves should be worn to prevent contact with blood or bloodcontaining fluids. ■ Aprons should be worn in high-exposure areas, e.g. trauma unit, labour ward. ■ A solution of household chlorine bleach should be used as a disinfectant for surfaces and other inanimate objects. ■ Spills of body fluids should be cleaned immediately with such disinfectant. ■ Blood-contaminated material or nappies should be disposed of in a plastic bag with a secure tie. ■ Children with ongoing bleeding should be separated from the others until such bleeding has stopped. ■ Human bites and sports injuries carry a very low risk for viral transmission, except if there is mixing of blood from both parties. Precautions need to be taken particularly by all health-care providers to prevent needle-stick injuries. ■
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PROPHYLAXIS (PEP) Procedure for ‘sharps injury’ or other exposure Each clinic or hospital should ensure that mechanisms to allow the procedure described below are in place before any accident occurs. ■ Following a ‘sharps injury’, immediate first aid should be given, such as flushing the site with running water, hand washing with soap and water, and, where there is bleeding, allowing the site to bleed briefly. ■ Any exposed mucous membranes should be flushed with large amounts of water. ■ Antiseptic solutions can have a caustic effect and have not been proven to be effective. However, in the absence of water, antiseptic solutions can be used. ■ Report injury to supervisor. ■ Ensure that the Workman’s Compensation Act (WCA) form is filled in. ■ Consult a doctor for assessment of injury and initiation of treatment. ■ Voluntary confidential counselling should be available immediately, and HIV testing and follow-up counselling made available. ■ Post-exposure prophylaxis (PEP) with ART can reduce the risk of becoming infected. ■ Starter-pack kits are available at government hospitals on a 24-hour basis, these include a 2-day course of AZT and lamivudine. The rest of the medication can be received at the hospital dispensary, except for indinavir, which must be obtained by the worker at his/her own expense. The risk of HIV-infection following exposure is outlined in Table 15 on the following page.
N .B .
Many health-care providers find reporting and undergoing voluntary testing and counselling stressful, and some choose to remain silent. This silence is often due to the fear, stigma and discrimination associated with HIV. They will require sensitive support to avoid the very unpleasant consequences.
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POST-EXPOSURE PROPHYLAXIS (PEP) Table 15: Assessment of exposure risk, HIV status of source and recommendations for post-exposure prophylaxis (PEP) Percutaneous injury
Risk of exposure
Superficial injury, Some risk solid needle Skin puncture, visible High risk blood on needle, hollow needle Needle used in vein or Highest risk artery
Deep intra-muscular injury or injection into body Mucosal and skin contact Unbroken healthy skin Compromised skin, small volume and brief contact Compromised skin, large volume and/or prolonged contact
Highest risk
Risk of exposure Low risk Low risk
Increased risk
Recommendation for PEP Consider basic regimen Recommend basic regimen Recommend basic regimen Consider expanded regimen Recommend basic regimen Recommendation for PEP Not recommended Consider basic regimen Recommend basic regimen
(continues on following page.)
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HIV status of source Risk of exposure
Recommendation for PEP Negative Very low Not recommended HIV positive, AIDS or Low for small volumes Consider basic low CD4 and/or high or short duration of regimen viral load skin contact HIV positive, AIDS or High risk for Recommend basic or low CD4 and/or high percutaneous injury expanded regimen viral load depending on the severity of the injury Unknown Consider PEP on a case by case basis
Timing of prophylaxis ■ ■ ■
Start as soon as possible, preferably within 1–2 hours of exposure. The exposure risk should be considered if there is a delay in obtaining prophylaxis. Prophylaxis is of doubtful benefit if started 72 hours after injury.
Post-exposure prophylaxis Prophylaxis should continue for 28 days. Table 16 outlines the recommended drug regimen.
Table 16: Recommended PEP drug regimen for adults Drug Zidovudine (AZT) Lamivudine (3TC) Indinavir (IND) in cases of high exposure
Dose 300 mg
Frequency
Duration
12 hourly
28 days
8 hourly
28 days
150 mg 800 mg
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POST-EXPOSURE PROPHYLAXIS (PEP)
PEP following alleged penetrative sexual abuse Recommended drug regimen ■ AZT (suspension 10 mg/ml) (see dosing table, Appendix 3) ■ 3TC (suspension 10 mg/ml) (see dosing table, Appendix 3) ■ Add Kaletra® if significant exposure has occurred For adolescents Tanner stage 3–4 (Table 10): ■ AZT 300 mg 2 x daily ■ 3TC 150 mg 2 x daily ■ Kaletra® (optional as above) Duration of prophylaxis is 28 days. Investigations ■ One must be sensitive about taking blood from a child in a postabuse situation. ■ Full blood count. ■ HIV ELISA on both victim and exposure source, where available. ■ It is useful to know the baseline HIV status; blood for HIV can be taken a few days up to 1 week post-exposure. ■ Follow up HIV ELISA at 6 weeks, 3 months and 6 months. Victim can be reassured that the likelihood of sero-converting beyond this period is extremely small. Stop prophylaxis if: ■ Victim is HIV DNA PCR positive (baseline HIV test) ■ Victim is over 18 months and is HIV ELISA positive ■ Perpetrator is HIV ELISA negative
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SECTION 13: LEGAL ISSUES Guidelines on HIV testing and treatment of orphans and vulnerable children Explanatory note: Currently the law does not permit any person other than a parent or legal guardian to consent to HIV testing and medical treatment in the case of a child below the age of 14 years. In the absence of consent from a parent or legal guardian, consent may be obtained from the Minister of Social Development or an application may be made to the High Court. The provisions of the Childrenâ&#x20AC;&#x2122;s Bill have widened the scope of who may provide consent by introducing a definition of caregiver and giving this class of persons certain legal rights, which include the right to consent to medical treatment. The Bill also lowers the age of consent to 12 and in cases where a child has sufficient maturity, a child below the age of 12 may also give consent. The Childrenâ&#x20AC;&#x2122;s Bill is currently in the process of being passed into law.
General statement HIV and AIDS presents one of the greatest threats to the wellbeing of children and has a catastrophic effect on the lives of children living in poverty. The loss of many adults to AIDS-related illnesses has meant that children have lost teachers, health-care workers and, most importantly, parents. The lack of an adequate social security net in South Africa means that many children live in informal care settings, without legal guardians to assist them.
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HIV testing of children HIV testing of any child may only take place if it is in the best interest of the child and if a person legally capable of providing informed consent, provides such consent. The HIV status of an abandoned child needs to be determined as: ■ Abandoned children have the same rights as other children. ■ HIV-infection must be excluded as soon as possible to institute appropriate medical management. ■ Adoptive and foster parents should be aware of the child’s health status in order to manage the health needs of the child effectively and to access appropriate support.
Informed consent Currently, until the Children’s Bill becomes enacted, informed consent to HIV testing and treatment may be provided by the following persons: ■ The child, if of the age 14 years and of sufficient maturity to understand the benefits, risks, social and other implications of the test ■ The parent or legal guardian of the child ■ Managers of children’s homes if the child has been legally placed in the institution
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LEGAL ISSUES Pre- and post-test counselling A child must receive age-appropriate pre- and post-test counselling by a trained person, regardless of whether the child is able to provide consent in terms of the Childrenâ&#x20AC;&#x2122;s Act. Where the child is not legally able to provide informed consent, the person providing such consent must also receive appropriate pre- and post-test counselling.
Confidentiality Children above the age of 12 and who are legally able to provide informed consent to an HIV test are entitled to maintain the confidentiality of their HIV status. Consent to disclose the HIV status of such a child must be given by the child. The same principle should apply to children below the age of 12, who are of sufficient maturity to understand the benefits, risks, social and other implications of the test. However, a strict interpretation of the law concludes that the parents and legal guardians of children below the age of 12 may have a legal right to have access to the results of the HIV test. In the case of children below the age of 12 and who cannot consent to HIV testing, consent to disclosure must be given by the persons referred to above.
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SECTION 14: COUNSELLING The following guidelines are provided to assist health workers for counselling of the mother or other caregiver.
Pre-test counselling ■ ■
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Choose a private area for counselling, where you will not be disturbed or overheard. Assure the client that everything said is confidential. (You could have a poster on your wall making this clear and showing your commitment.) Talk through the reasons for HIV testing of the child and/or the mother. Ask questions in a sensitive way to find out about current and previous risk behaviour. Remember that the client may not know about her/his partner’s risk behaviour. Find out how much the client already knows and how much he/she wants to know. Offer information about HIV and AIDS. Offer information about the HIV antibody test, including information about the ‘window period’ of infection. Go through the implications of a positive test result for the client and her/his family, and the emotional responses, e.g. fears, anger, loss, etc. Discuss the client’s possible responses to a positive test result. The client can think about who he/she would tell and where to get support. Be aware of what the client’s concerns are and let these guide the discussion. For example, if a woman is being counselled and already has children, her major concern may be what will happen to her children if she is HIV positive. Go through the implications of a negative test result. Provide information about how the test is done, how long before the results will be ready, and how the client could obtain the results. Give enough time for the client to consider whether he/she wants to have the test. If the client decides to have the test, obtain consent in writing on the clinic card.
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Counselling is essential after the result of the test has become available, irrespective of the result. Always meet with the mother or caregiver as soon as possible. Before speaking to the client familiarise yourself with the facts about the client. Find a private room where you will not be disturbed. Allow the client to express emotion. Allow for silence; time may be needed to absorb bad news. If an HIV ELISA was done in an infant this will reflect the mother’s status, but not necessarily that of the infant. In such a case the infant’s HIV status will be determined by a PCR if <18 months or an ELISA positive result if older (refer to section on infant diagnosis, pages 14–15). The parents must therefore be counselled both about their own status and that of their child.
If the result is negative ■ ■
Deal with the feelings arising from a negative result and explain about the ‘window period’. Discuss ways to prevent HIV-infection through safer sex and the importance of remaining negative.
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Tell the person as clearly and gently as possible. Deal with the immediate feelings. Give the client time to understand and discuss the result. Provide information in a way that the client can understand, provide emotional support and help the person to discuss how he/she will cope. Discuss how the person plans to spend the next few hours and days. Identify what support he/she has.
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Discuss with whom the client wants to share the test result. Find out if the client intends to tell his/her partner. Help the person to decide whether or not to tell him/her immediately and, if appropriate, how to tell him/her. Go through the ways the client can take care of her/his own health and let her/him know about any available treatment. For a pregnant woman, go through the ways she may reduce the risk of MTCT during pregnancy, labour and after the birth. Discuss how she will feed the baby and the importance of exclusive feeding – whatever choice she makes. Discussion of co-trimoxazole prophylaxis for the infant and the mother needs to be initiated. Details of this must be discussed at a follow-up session. Identify what difficulties or problems the person foresees and discuss how to deal with them. Encourage the client to ask questions. Where possible and acceptable refer the client to a community organisation for support. Encourage the client to return for a follow-up session when he/she has had time to think about some of the information just provided. If appropriate, some information could be written down as the person is unlikely to be able to remember everything that was said. If the child is HIV-infected, the parent or caregiver must be told what to expect with regard to the health of the child, possible ART and how to care for the child.
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SECTION 15: DISCLOSURE TO The UN Convention on the Rights of Children (Article 12) states that children have the right to participate in decisions about their own health care. The decision to disclose the HIV status to the child is a difficult one to make.
Reasons for disclosing HIV status ■
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As the age of children living with the disease steadily increases it will result in a population of sexually active young people with HIV-infection. Keeping the secret is a burden. Disclosure should always be in the best interests of the child. This applies to the disclosure itself as well as the manner of disclosure. Benefits of disclosure include recognition of the child’s autonomy, increased intimacy with those close to the child, and improved psychological adjustment. The child may need to prepare for tasks ahead (sickness, painful procedures etc.). The child will need to participate in ART adherence. Children often know more than adults think they do. Children not told about their disease often have much more anxiety and distress. Disclosure needs to take place before adolescence.
Guidelines for disclosing HIV status Many parents/caregivers are afraid to tell their children. They will need encouragement and support to do this. However, it is inadvisable to disclose the status to the child against the wishes of the parent/caregiver. ■ Where possible get help from trained child counsellors. ■ Try to balance the needs of the child and the parents. Disclosure is a process, not a once-off event; plan future visits to answer questions and assess how the child is coping with the information. ■ Assess the child’s readiness.
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Offer the parents time, support and information. Plan in advance the time, place and people who will be present for the disclosure. However, it is best to avoid a formal, solemn occasion. It may be an advantage to have a written plan of what should be disclosed to the child.
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Find out how much the child knows about the illness and what he/she wants to know. Children need to know that they are loved and will be cared for. Many children believe that sickness is their fault – they need reassurance that their illness or their parent’s illness is not a punishment for a wrongdoing. Children need to learn how HIV is transmitted. The age of the child suggests what can be told to them, e.g. a 5-year-old may not need to hear the word HIV, while an older child can be given more information. Be honest. If you don’t know the answer to the child’s questions say so and then seek help. Be led by the child in terms of the amount of information he/she requires. Use language appropriate for the child’s insight, understanding, education and emotional readiness. Anticipate possible responses by the child and plan for the future; this may include follow-up sessions, counselling and support for the child and parent/family, or education about signs of emotional distress in children. Anticipate the impact of the disclosure on other family members, friends, the school and the community and plan for this. Once the disclosure has happened, monitor the child’s behaviour (sleeping, school problems and withdrawal). Changes in behaviour can indicate a need for more support and intervention. Despite the best planning, you cannot be certain how a child will respond. Be respectful of the child’s needs, feelings and responses. Stories and books may be useful.
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