Increasing numbers of perinatally infected children are surviving to adolescence and adulthood. This group is emerging as a unique population and a unique challenge for policy makers, programmers and service providers, thus requiring attention and a stronger understanding of their unique needs to support their continued health and development. This toolkit is designed to support healthcare and community care providers, families, caregivers, and the adolescents themselves with the transition of care, support and transition services from pediatric to adult care. The collection includes the toolkit and trainer's manual, along with Microsoft Word versions of the individual tools, which can be adapted for different country contexts.
Increasing numbers of perinatally infected children are surviving to adolescence and adulthood. This group is emerging as a unique population and a unique challenge for policy makers, programmers and service providers, thus requiring attention and a stronger understanding of their unique needs to support their continued health and development. This toolkit is designed to support healthcare and community care providers, families, caregivers, and the adolescents themselves with the transition of care, support and transition services from pediatric to adult care. A trainer's manual for health care providers is also included.
Regional Technical Consultation Report: February 7–10, 2012, Gaborone, Botswana
The PEPFAR PMTCT/Pediatric Technical Working Group and USAID's Africa Bureau hosted a field-driven learning meeting for U.S. government staff and key African partners from February 7-10, 2012, in Gaborone, Botswana. The consultation was held in response to calls from practitioners, government officials, and programmers to share knowledge, experience, and resources on how to best care for the increasing numbers of perinatally infected children surviving to adolescence and adulthood. This group-emerging as a unique population and a unique challenge for policy makers, programmers, and service providers-requires greater attention and a stronger understanding of their unique needs to support continued health and development. The meeting highlighted programs in eight countries that are facing and responding to the needs of adolescents living with HIV and the gaps and opportunities in transitional services.
Sub-Saharan Africa has the highest HIV burden in the world, with 67 percent of the estimated 34 million people living with HIV. Globally, children under 15 years are particularly hard hit: 3.4 million are living with HIV, 90 percent of whom live in sub-Saharan Africa (WHO 2011a).
Approximately one-third of infants born to mothers living with HIV are not on antiretroviral therapy (ART), either for their own clinical care or for the prevention of mother-to-child transmission, and will be infected during pregnancy, birth, or breastfeeding. Until recently, it was assumed few children infected during this period would live beyond their fifth birthday. Recent data has emerged to challenge this assumption because children infected via vertical routes are now entering adolescence in sub-Saharan Africa. Recent projections suggest that 36 percent are slow progressors and have a median survival age of 16 even without access to treatment (Ferrand et al. 2009a). Moreover, many children who acquire HIV during the perinatal period and are subsequently on ART are now expected to live a long healthy life. However, they live with a host of clinical and psychosocial care needs that most community support and health systems in sub-Saharan Africa are not equipped to address (Ferrand et al. 2010; Li et al. 2010; Petersen et al. 2010; Valenzuela et al. 2009). With recent evidence showing that ART can prevent sexual HIV transmission among serodiscordant couples (Cohen et al. 2011), decisions about when to start treatment, adherence, and retention become even more critical to address among adolescents living with HIV. Transition can be both a mental and physical reality for all adolescents living with HIV, and services should promote self-care that includes adherence to ART and the adoption of appropriate individualized prevention strategies to help reduce further HIV transmission (The Lancet 2011a).
Module 1: Summary
- Stages of Psychosocial Development Tool (Tool 1.1.1)
This tool aids to assess the adolescent’s developmental stage. An additional table is provided to document and track psychosocial development over time.
- Self-Management Timeline (Tool 1.1.2)
This may be used as a resource to determine expected behavior for the adolescent to take on self-management responsibility.
- Psychosocial Assessment Tool for the Interview with the Family/Caregiver (Tool 1.1.3)
This tool may be used to assess the living situation through interviewing the adolescent and their family/caregiver together
- Psychosocial Assessment Tool for the Interview with the Adolescent (Tool 1.1.4)
This tool may be used assess the current psychosocial status through a private interview.
- My Psychosocial Development Journal (Tool 1.3.5)
This journal may be given to the adolescent to help him or her identify strengths and explore challenges.
Module 2 Summary
- The Mental Health Symptom Screener (Tool 2.1.1)
This tool can be utilized to assess for depression and anxiety in the adolescent.
- Additional Mental Health Screens (Tool 2.1.2)
This list provides a collection of mental health screening tools to consider.
- Your Adolescent’s Emotional Health (Tool 2.2.3)
This information sheet can be provided to the family/caregiver so that they are aware of depression and anxiety signs and symptoms to monitor in the adolescent.
- Your Emotional Health (Tool 2.3.4)
This information sheet can be provided to the adolescent so that he or she may self-monitor for signs and symptoms of depression and anxiety.
- My Emotional Health Journal (Tool 2.3.5)
This tool should be utilized by the adolescent to explore his or her own thoughts around his or her emotional health. The adolescent should be told this is for private journaling, and the adolescent can share it with others only if he or she wants to
Module 3: Summary
- Sexual & Reproductive Health Assessment Tool for the Adolescent Interview (Tool 3.1.1)
This tool can aid in assessing the SRH needs and hopes of the adolescent.
- Family Planning & Pregnancy Counseling Guide for the Health Care Provider (Tool 3.1.2)
This tool should be utilized as a resource to guide SRH decisions and can be adapted to fit the family planning methods available in different contexts/settings.
- Sexually Transmitted Infections Screening Tool for the Health Care Provider (Tool 3.1.3)
This tool should be utilized by the HCP to assess the need for testing for STIs.
- Discussion Guide: Sex & Relationships (Tool 3.2.4)
This tool can guide family/caregivers in how to talk to their adolescent about sex and relationships; it can be adapted to fit to different contexts/settings
- Sexually Transmitted Infection Fact Sheet (Tool 3.3.5)
This fact sheet should be shared with the adolescent to give him or her more information on STIs and their prevention.
- Pregnancy & Prevention of Mother-to-Child Transmission Fact Sheet (Tool 3.3.6)
This fact sheet should be shared with the adolescent to give him or her more information on adolescent pregnancy and prevention of mother-to-child transmission of HIV.
- My Sexual & Reproductive Health Journal (Tool 3.3.7)
This tool should be utilized by the adolescent to explore his or her own future hopes and sexuality. The adolescent should be told this is for private journaling, and it can be shared with others only if the adolescent wants to.
Module 4: Summary
- Protective Services Checklist (Tool 4.1.1)
This allows the HCP to ensure a range of protective services are available in the community. Use in conjunction with the tools found in Module 10: Linking Health Facilities and Community Programs.
- Gender-Based Violence & Abuse Screening Tool for the Adolescent Interview (Tool 4.1.2)
This allows the health provider to screen for abuse and GBV.
- My Safety Journal (Tool 4.3.3)
This journal can be provided to the adolescent to allow him or her to process experiences around abuse and prepare for articulating the experience to providers.
Module 5: Summary
- The Substance Abuse Symptom Screener (Tool 5.1.1)
This tool can help to assess for alcohol and substance abuse. This will help you determine if the adolescent is at risk for has alcohol and substance use issues.
- Alcohol & Substance Use Counseling Guide for Health Care Providers (Tool 5.1.2)
This tool can help the provider talk to the adolescent about alcohol use and other substances.
- Discussion Guide: Alcohol & Substance Use (Tool 5.2.3)
This tool can guide families/caregivers in how to talk to their adolescent about alcohol and substance use.
- My Alcohol & Substance Use Journal (Tool 5.3.4)
This tool should be utilized by the adolescent to explore his or her own thoughts around alcohol and substance use. The adolescent should be told this is for private journaling, and the adolescent can share it with others only if he or she wants to.
Module 6: Summary
- Stepwise Disclosure (Tool 6.1.1)
This tool should be utilized by HCPs and families/caregivers to work toward beneficial and developmentally appropriate disclosure.
- Disclosure Discussion Guide (Tool 6.1.2)
This tool can help the provider discuss the complexities associated with disclosure to both the adolescent and the family/caregiver.
- Discussion Guide: Disclosure (Tool 6.2.3)
This tool can guide families/caregivers in how to talk about disclosure with the adolescent.
- Disclosing Your Status (Tool 6.3.4)
This tool should be utilized by the adolescent to plan for disclosing his or her HIV status to others. The adolescent should be told that when to disclose and to whom is completely up to him or her
- My Disclosure Journal (Tool 6.3.5)
This tool should be utilized by the adolescent to explore his or her own thoughts around disclosure. The adolescent should be told this is for private journaling, and the adolescent can share it with others only if he or she wants to.
Module 7: Summary
- A Grief Assessment Discussion Guide (Tool 7.1.1)
This provides open-ended questions allowing the HCP/CCP to routinely monitor the adolescent’s grieving symptoms over time.
- A Guide to Counseling (Tool 7.1.2)
This allows the HCP/CCP to review effective counseling techniques and outlines behaviors and language to avoid.
- Helping Your Adolescent to Grieve (Tool 7.2.3)
This tip sheet should be provided the family/caregiver to aid them in supporting the adolescent as he or she experiences the grieving process.
- A Guided Memory Book (Tool 7.2.4)
This tool can be utilized by the ill family member to provide his or her loved ones with information about his or her life and family prior to passing. Provide a memory book for each ill family member or encourage them to utilize it collectively
- My Grief Journal (Tool 7.3.5)
This guided journal can be provided to the adolescent who is experiencing a loss as a means to express his or her grief.
Module 8: Summary
- Adolescent Clinical Transition Document (Tool 8.1.1)
This tool should be completed by the pediatric HCP and given to the adult HCP upon transition.
- Key Steps at the Baseline Visit (Tool 8.1.2)
This checklist outlines key steps that should take place on the first visit.
- Key Steps for Adolescents not on Antiretroviral Therapy (Tool 8.1.3)
This checklist outlines key steps that should be taken routinely for adolescents not yet on ART.
- Key Steps for Follow-up Visits & Clients on Antiretroviral Therapy (Tool 8.1.4)
This checklist outlines key steps that should be taken for adolescents on ART who have routine follow-up visits.
- Antiretroviral Therapy Guide (Tool 8.1.5)
This tool is an ART prescription guide for pre-pubertal and post-pubertal adolescents.
- Adherence Support Prior to Treatment Discussion Guide (Tool 8.1.6)
This tool may be used to determine the adolescents’ and/or family/caregiver ART preparedness.
- Adherence Readiness Assessment Quiz (Tool 8.1.7)
Provide this quiz to the adolescent prior to ART prescription to determine adherence readiness.
- Adherence Assessment Tool (Tool 8.1.8)
This tool should be utilized to assess adolescents’ medication adherence.
- Tanner’s Staging Guide (Tool 8.1.9)
This tool provides puberty staging information for girls and boys.
- Medication Adherence Diary (Tool 8.3.10)
This tool should be completed by the adolescent to record their medications; they should be encouraged to bring this diary to clinic visits as an additional adherence assessment tool.
- Medications Worksheet (Tool 8.3.11)
This tool should be utilized to by the adolescent to help keep track of his or her medicines.
- My Clinical Considerations Journal (Tool 8.3.12 )
This tool may be used by the adolescent to explore his or her own thoughts around -—and adherence to-—medication.
Module 9: Summary
- Tips for Adolescent Motivational Interviewing (Tool 9.1.1)
This tip sheet should be used by the HCP/CCP when trying to facilitate positive change with the adolescent.
- The Readiness to Change Ruler (Tool 9.1.2)
This assessment helps to determine the adolescent’s readiness to change a specific behavior
- HIV Knowledge Assessment (Tool 9.1.3)
This quiz can test the adolescent’s HIV knowledge and also be used as a teaching tool to review important information prior to transition. The answer key can be found on the following page.
- Positive Living Tips (Tool 9.2.4)
This tip sheet provides information for the family/caregiver on assisting the adolescent in living positively
- Self-Care Guide (Tool 9.2.5)
Provide this tool to the family/caregiver to discuss strategies to maintain their own well-being.
- Food for Health: Nutrition Tips (Tool 9.2.6)
Provide this tool to the family/caregiver to encourage nutritious eating at home.
- Food for Health: Nutrition Tips (Tool 9.3.7)
Provide this tool to the adolescent to supplement health education for improved nutrition.
- Stigma Action Plan (Tool 9.3.8)
Share this stigma action plan with the adolescent to identify sources of stigma, and to create action plans to address stigma
- HIV Peer Support Groups (Tool 9.3.9)
This tool provides information to the adolescent on the benefits of joining or starting an HIV peer support group
- My Positive Living Journal (Tool 9.3.10)
This comprehensive guided journal and workbook should be distributed to the adolescent to encourage positive living.
Module 10: Summary
- Community-Based Organization/Health Facility Directory (Tool 10.1.1)
The CBO/health facility directory provides a template to fill in when gathering information about programs for ALHIV in your region; include information for your facility as well. When all of the information has been gathered, this directory should be distributed among all facilities in your community to facilitate bidirectional referrals and linkages. You should incorporate routine use of this directory into your services to make referrals for ALHIV and their families/caregivers.
- Needs of Transitioning Adolescents Living with HIV (Tool 10.1.2)
This information sheet should be distributed to other organizations who work with ALHIV to provide them with information surrounding the needs of transitioning adolescents so that they can adapt their services and support referrals to other organizations accordingly. This information sheet can be distributed during your visits to organizations within your community or during the community-based forum meetings.
- Home Visit Guidance (Tool 10.1.3)
Home visits can provide an opportunity to get a more complete picture of the adolescent’s life. Providers will be more able to provide holistic care that meets the physical, psychological, social, and spiritual needs of their clients.
Family/Caregiver and Adolescent Tool
- Guide to Health & Social Resources (Tools 10.2.4)
This guide can be filled out based on the information that you have entered into the directory. This guide should be filled out by yourself or a program administrator and distributed to families/caregivers. Encourage family/caregiver to access these services during the transition process.
Family/Caregiver and Adolescent Tool
- Guide to Health & Social Resources (Tools10.3.4)
This guide can be filled out based on the information that you have entered into the directory. This guide should be filled out by yourself or a program administrator and distributed to adolescents. Encourage the adolescent to access these services during the transition process.
This checklist should be utilized throughout adolescence to track which modules in this Toolkit have been introduced. It can help ensure that these components are reviewed as needed to increase the adolescent’s and the family/caregiver skill set and knowledge base.
This checklist provides a format for the provider to establish goals for self-management tasks with the adolescent as they progress towards transition of care. Transition is dependent upon the adolescent’s knowledge surrounding HIV, preventive health behaviors, ability to manage psychosocial issues, and achievement of self-management goals. It will be helpful to provide updated copies to the adolescent and the family/caregiver as new self-management goals are established. Encourage the adolescent and his or her family/caregiver to use the comprehensive transition checklist to reinforce goal-setting at home.
This checklist provides prompts and links to critical tools within this Toolkit that can assist the provider in assessing if the adolescent is transition ready. See the key tools referenced in this checklist to assess if the adolescent client is transition-ready.
This checklist provides information to the family/caregiver on how to support the transitioning adolescent and should be provided to the family/caregiver at the beginning of the transition process.
This checklist assists the adolescent in thinking about his or her self-care tasks. The adolescent should be able to accomplish all of these tasks prior to transition.