Psychosocial Care and Counseling for HIV-Infected Children and Adolescents a Training Curriculum

Psychosocial Care and Counseling for HIV-Infected Children and Adolescents A Training Curriculum Psychosocial Care and Counseling for HIV-Infected Children and Adolescents A Training Curriculum 2009 Revised edition published by Catholic Relief Services, Baltimore, 2009. First edition published 2008 by ANECCA Secretariat Regional Centre for Quality of Health Care Makerere University School of Public Health P.O.Box 29140 Kampala Tel: 256-414-530888 Fax: 256-414-530876 Email: [email protected]/[email protected] For information, address Catholic Relief Services (CRS) 228 West Lexington Street Baltimore, MD 21201-3413 USA www.crs.org [email protected] Graphic design by Ephra Graham. Cover photo by David Snyder for CRS. Edited by Carole Zemont Ndiaye. Download this and related material at www.crsprogramquality.org. The funding for the development and production of these materials has been obtained through the President’s Emergency Funding for AIDS Relief (PEPFAR) to Catholic Relief Services/AIDSRelief under a grant from the Department of Health and Human Services, Health Resources and Services Administration Grant # U51HAO2521-01-01, a grant to the Regional Centre for Quality of Health Care from the United States Agency for International Development, Grant # USAIDEA 623-SOAG623011 and Catholic Relief Services private resources. Table of Contents Acknowledgements v Foreword vii Curriculum Overview ix Introduction and Purpose of the Course ix Target Group ix Course Duration ix Training and Learning Methods ix Training Materials x Selection Criteria for Facilitators x Selection Criteria for Trainee Participants x Adaptation of the Course to Training Needs x Methods of Evaluation x Course Timetable Template xi Course Organization xi Module 1: Overview of HIV Infection, Care, and Antiretroviral Treatment in Children 1 Module 2 : Child Development 29 Module 3: Family Structure and Dynamics 45 Module 4: Psychosocial Aspects of Pediatric HIV Care 61 Module 5: Communicating with Children 89 Module 6: Counseling Children 111 Module 7: Working with Adolescents 135 Module 8: Counseling Children on HIV and AIDS 163 Module 9: Disclosure of HIV Status to Children 181 Module 10: Adherence to ART in Children 203 Module 11: Palliative Care for Children 227 Module 12: Grief and Bereavement 243 TABLE OF Contents III Module 13: Legal and Ethical Issues 267 Module 14: Health Care Provider Support 283 Appendix 297 Sample Course Schedule 298 Training Final Evaluation 300 Iv TABLE OF Contents Acknowledgements The development and production of this training curriculum for Psychosocial Care and Counseling for HIv Infected Children and Adolescents has involved many people of varying expertise and experience in the area of pediatric HIv care and support, treatment and counseling. The process began in March 2006 in Dar Es Salaam, Tanzania where AIDSRelief/CRS partnered with ANECCA to hold a regional training workshop on pediatric HIv counseling. various experts participated in the organization and conduct of this workshop. They include: • Dr. vicky Tepper – University of Maryland • Dr. Carmela Green-Abate – AIDSRelief/CRS • Dr. Nathan Tumwesigye – ANECCA/RCQHC • Dr. Margaret Makanyengo – Kenyatta National Hospital, Kenya. • Ms. Rose Nasaba – Nsambya Hospital, Uganda • Ms. Ruth Woodhead - Expert • Ms. Zinat Fazal – PASADA, Tanzania Some of the materials developed for and used in this workshop were subsequently improved on by a group of experts in the area of HIv counseling in Kenya, working under the auspices of NASCOP-Kenya to develop a Kenya National Pediatric HIv/AIDS Psychosocial Counseling Curriculum. We are grateful to the experts who contributed to this process. They include: • Mrs. Margaret Gitau- NASCOP-Kenya • Dr. Margaret Makanyengo – Kenyatta National Hospital, Kenya • Dr. Josephine Omondi - Kenyatta National Hospital, Kenya • Dr. Lisa Obimbo - University of Nairobi • Dr. Mbuthia - Kenya Pediatric Association • Mrs. Lilian Otieno - Gertrude Children’s Hospital • Miss Rose Owaga - Kenyatta National Hospital • Mrs. Ruth Kinoru - Kenyatta National Hospital • Mrs. Catherine Wemmis - Kenyatta National Hospital • Mrs. Gloria Kimani - University of Nairobi • Mr. Allan Maleche - NASCOP • Mr. Gregg Stracks - USA • Dr. Sobbie Mulindi - University of Nairobi • Mrs. Betty Githendu - NASCOP Subsequently, AIDSRelief/CRS and RCQHC/ANECCA worked together to improve and build upon this previous work to develop these comprehensive materials to improve expertise in the counseling of children affected by HIv. Working with a group of experts from various countries in East and Southern Africa, the two organizations carried out a comprehensive review of various materials for training health care providers available and reached the conclusion that a more user-friendly (to both trainers and trainees), easy to understand, yet comprehensive curriculum needed to be developed. This curriculum, with the following components – curriculum description and implementation guide, a facilitator’s manual as well as training tools in the form of Microsoft Power Point slides, role-plays, case studies and video clips, has been designed with the expectation that it will fulfill these characteristics. The experts who contributed to the Acknowledgements v process of designing and developing this training package are: • Ms. Zinat Fazal – Tanzania • Ms. Rose Nasaba – AIDSRelief/IHv Uganda. • Ms. Esther Kangavve – Mulago Hospital, Uganda • Ms. Resty Ingabire – Nsambya Hospital, Uganda • Ms. Joyce Angulo – EGPAF, Uganda • Ms. Collette Cunnigham, CRS-SARO, Zambia • Dr. Susan Strasser – AIDSRelief/CRS, Zambia • Dr. Simon Kangether – Moi University, Kenya • Dr. Margaret Makanyengo – Kenyatta National Hospital, Kenya. • Dr. Josephine Omondi - Kenyatta National Hospital, Kenya • Dr. Carmela Green-Abate – AIDSRelief/CRS • Dr. Nathan Tumwesigye – RCQHC/ANECCA. Their contribution is greatly valued. The ANECCA Secretariat at the Regional Centre for Quality of Health Care, Makerere University School of Public Health, provided organizational and technical leadership for the process. All the staff of the Regional Centre for Quality of Health Care selflessly provided support, in many different ways, towards the development and production of the curriculum. We are also grateful to the Office for Regional Health and HIv/AIDS Programs - USAID–East Africa, who provided logistic and technical support to RCQHC/ANECCA to facilitate the process of the development and production of the curriculum. AIDSRelief is a five-member consortium funded through the President’s Emergency Plan for AIDSRelief (PEPFAR). Catholic Relief Services is the prime grant recipient: consortium partners include the University of Maryland School of Medicine Institute of Human virology as clinical lead; Futures Group International as lead on strategic information; and IMA World Health, the Children’s AIDS Fund, and Catholic Medical Mission Board as site managers of local partner treatment facilities. vI Acknowledgements Foreword HIv is a major cause of infant and childhood mortality and morbidity in Africa. Among children age <5 years, HIv now accounts for 7.7% of mortality worldwide. Together with factors such as declining immunization coverage, HIv is threatening recent gains in infant and child survival and health. In Africa, high rates of maternal HIv infection, high birth rates, lack of access to currently available and feasible pediatric HIv treatment interventions, and the widespread practice of prolonged breast-feeding translate into a high burden of pediatric HIv disease. The transmission risk for a child born to an HIv-infected mother in an African setting without interventions for prevention of mother-to-child transmission (PMTCT) is about 30–40%. The other 60–70% of children, although not HIv-infected, still have a 2- to 5-fold risk of mortality as a direct consequence of the mother’s HIv disease, when compared to children born to uninfected mothers. A multitude of programs are currently focusing on scaling up pediatric HIv prevention, care, treatment and support services. In addition, however, there is urgent need to focus efforts on specific training for health workers to build the much needed motivation, confidence, knowledge and skills to help manage HIv infection and disease among infants, children and their families. First level health workers are already actively managing children who, together with women of reproductive age, are the most common users of primary care health services including curative services. With additional training and ongoing support, these same workers will more readily identify children and families in need of HIv services, discuss and offer HIv testing to children and families, as well as initiate simple, readily available and life saving technologies such as cotrimoxazole preventive therapy. With the availability of simplified and standardized national ART regimens, these same health workers can identify and initiate eligible children on ART and/or manage stable children already initiated on ART. One of the gaps in the delivery of pediatric HIv care services is the provision of counseling to HIv infected/affected children and their families. A limited number of health care workers have adequate knowledge and skills to comfortably practice pediatric HIv counseling with respect to pre-test and post-test counseling, disclosure of HIv to children or helping care takers to disclose HIv status to children, provide on-going supportive counseling and address care and treatment adherence issues. The

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