WHO/HIV/2013.58©
World Health Organization 2013
CHIVA Annex Characteristics of participants – parents and caregivers of children receiving ART Number of participants Sex Female Male 18–24 Age (years) 25–34 35–44 45–54 55+ City Live in Suburb Township Rural area Parent or caregiver Parent Caregiver 0–11 months Age of child 1–3 years 4–6 years 7–9 years 10–12 years Always Does the child live with you? Sometimes Not often Less than 6 months Child’s treatment duration 6 months – 1 year 1–2 years 2–4 years Longer than 4 years d4T, 3TC, efavirenz Treatment regimen d4T, 3TC, Kaletra ®
% 46 1 7 11 14 9 6 1 1 24 21 19 28 4 7 14 9 13 40 5 2 6 8 4 10 19 7 7 6 6 2 19 17 30 8 16 17 6 97.90% 2.10% 14.90% 23.40% 29.80% 19.10% 12.80% 2.10% 2.10% 51.10% 44.70% 40.40% 59.60% 8.50% 14.90% 29.80% 19.10% 27.70% 85.10% 10.60% 4.30% 12.80% 17.00% 8.50% 21.30% 40.40% 14.90% 14.90% 12.80% 12.80% 4.20% 40.40% 36.20% 63.80% 17.00% 34.00% 36.20% 12.80%
ABC, 3TC, efavirenz ABC, 3TC, Kaletra® Nevirapine Don’t know Switched treatment? Yes No 0–15 minutes Distance to clinic 15–30 minutes 30 minutes – 1 hour Over 1 hour
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Characteristics of participants – pregnant women living with HIV Number of participants 18–24 Age (years) 25–34 35–44 45–54 55+ City Live in Suburb Township Rural area First Number of pregnancies Second Third Fourth >four Before I became pregnant Tested HIV positive During this pregnancy During a previous pregnancy During this delivery On ARV treatment For own health For PMTCT Before pregnancy Started on ARV treatment During this pregnancy During a previous pregnancy During this delivery All appointments Appointment attendance Some of them Only a few No appointments Feeding choice Breastfeeding Formula Combination 0–15 minutes Distance to clinic 15–30 minutes 30 minutes – 1 hour Over 1 hour 7 27 12 0 0 1 3 36 6 11 13 15 6 1 19 21 4 2 19 27 11 29 6 0 41 3 2 0 24 18 4 5 17 19 5 Percentage % 15.20% 58.70% 26.10% 0 0 2.20% 6.50% 78.30% 13.00% 24% 28.30% 32.50% 13.00% 2.20% 41.30% 45.70% 8.70% 4.30% 41.30% 58.70% 24% 63% 13.00% 0 89.20% 6.50% 4.30% 0 52.20% 39.10% 8.70% 10.90% 36.90% 41.30% 10.90%
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Themes and subthemes Parent and caregivers of children receiving ART Theme Subtheme Challenging factors Medication Taste Strict 12-hourly timings Side effects, especially on starting ART Number of tablets Changing formulations Disclosure Financial difficulties Child not understanding the need for medication Caregiver anxieties over telling the truth Transport money Food to take medication Complications with proof of legal guardianship Health service factors Distance to the clinic Medication stock-outs No provision of ART at primary health care clinics Frequent appointments Staff attitudes Lack of confidentiality Impact on the parent or caregiver Having to quit work to attend appointments Inability to keep up with the demands Not understanding ART Feeling of guilt if child became unwell Supportive factors Support Family Health care workers Neighbours and friends Observed benefit of ART Disclosure Dramatic improvements in their child’s health Openness with the child regarding their status Continuing discussions after disclosure Ensure understanding why they are taking their ART Increased caregiver understanding Treatment classes Discussions with others Health care worker input Independence with taking ART Health service factors Encouraging autonomy Joint effort with children in remembering Less frequent appointments Increased duration of medication supply Free transport to clinic Suggested strategies for improving adherence Financial or economic assistance Income-generating projects
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WHO/HIV/2013.58© Free transport to clinic Improved grant structure Food provision Health service changes Decentralization of ART to improve access Less frequent appointments
World Health Organization 2013
People living with HIV as health care workers Family clinics Improved appointment structure Delivery of ART Increased support Parent and caregiver support groups Improved access to counselling Social worker involvement Start earlier and younger to assist children in getting used to taking ART Start treatment at diagnosis to maintain the child’s health Start even if they are well to prevent them from ever becoming sick What to start on? Once a day Can be taken in the evening Taste better Do not require refrigeration
When to start?
Pregnant women living with HIV Theme Subtheme Challenging factors Diagnosis Shock Coping with HIV and pregnancy Struggling with acceptance Upsetting disclosure experience Disclosure Difficulty disclosing to family and partners Fear Not wanting to buddy, since it means disclosing Lack of support Isolated Rejection from family Stigma from community Partners not accepting diagnosis Understanding ART Limited understanding of the importance of ART Many questions, especially around how ART affects their unborn baby Confusion around feeding choices Medication Health service Side effects, especially nausea Number of pills Frequent appointments Travel costs to clinic Staff attitudes
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WHO/HIV/2013.58© Waiting times ART availability Pre-engaging in care postpartum Supportive factors Support and acceptance From clinic Counselling Discussions with others Support group Family and partners Benefit of ART Disclosure Understanding ART Own health Health of their baby To others for support Information from counselling Treatment classes Support groups Reminders Alarms Diary Friends and partners Suggested strategies for improving adherence Early diagnosis and acceptance Including partner’s acceptance Health service changes
World Health Organization 2013
Decentralization of ART to improve access, including mobile clinics Less frequent appointments After-work clinics Training of health care workers More private counselling areas Family clinic (mother and child’s ART and care available in the same clinic)
Support groups More information
Ones that include partners and encourage the involvement of men Discussions with other mothers To improve understanding For families and communities On positive living
Responses to option B+ For option B+ Benefits for their own health Increases the likelihood of having a HIV-negative baby Be less confusing and more straightforward Encourage ongoing engagement in care Against option B+ Creates extra strain on current clinics and government finances Would be too much to cope with Causes further problems with adherence, especially if the person is not unwell Increases the chances of having medication side effects Causes anxieties about having a lifetime commitment to ART Additional considerations Requirement of further information and advice on the options and consequences of each
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Potential added benefit of being counselled by women and mothers living with HIV The need for time to decide – with some suggesting a week Ultimately, the decision between options should be theirs Going to clinics different to those of their children for medication would decrease acceptability A warning that pressure to choose B+ could result in defaulting
Workgroup discussion guide Values and preferences of parents and caregivers of children living with HIV receiving ARV treatment Task 1. Current experiences o What has it been like for you and your child in starting and keeping them on treatment? • Prompt: What is your experience in relation to: storage, timing of doses, formulation and amount, getting your child to take the medication, adjusting doses with growth, dividing pills into smaller doses, collection of medication etc. o Draw, write down or explain your experiences and views and present them.
Task 2. Identification of current support or hindrances o What has assisted or made it difficult for you and your child in starting and keeping them on treatment? • Prompt: What makes it easier for you? What makes it harder for you? o o o Draw, write down or explain five things that helped Draw, write down or explain five things that make it harder List them from the most helpful too the most difficult and explain the reasons behind your choice
Task 3. Solutions o What would help you to support your child in starting and keeping them on treatment? • Prompt: What would help other caregivers to support their child starting and keeping them on treatment? o Draw, write down or explain your response and present it.
Task 4. Specific questions for discussion o We understand that younger children have to take treatment twice a day. Is this hard for you? Would taking it once a day make a difference for you? o Would you consider starting your child on treatment when they are feeling well? Or would you prefer to wait until they are unwell? Give a reason for your answer. At what age would you prefer to start your child on treatment? Younger than 3 years old or older? Or does it not matter? Give a reason for your answer.
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Part 2) Values and preferences of pregnant women living with HIV Task 1. Current experiences Divide the group into two smaller groups of five people in each o o Group 1 What was it like for you taking ARV treatment during and after your pregnancy? Prompt: What is or was your experience in relation to taking your treatment, feeding choices etc. Group 2 What was it like for engaging in care during and after your pregnancy?
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Prompt: What is or was your experience in relation to attending your appointments, including follow-up? o Draw, write down or explain your experiences and views and present them.
Task 2. Identification of current support or challengers o Group 1 - What has helped you in taking your ARV treatment during your pregnancy and/or breastfeeding? - What has made it hard for you in taking your ARV treatment during your pregnancy and/or breastfeeding? - Prompt: What has made it easier for you? What has made it harder for you? o Group 2 What has helped you to stay in long-term care and follow-up, including after you had your baby? What has made it hard for you to stay in long-term care and follow-up, including after you had your baby? Prompt: What has made it easier for you? What has made it harder for you? o o o Draw, write down or explain five things that assisted. Draw, write down or explain five things that hindered or caused challenges. List them from the most supportive to the most hindering and present the reasons behind your choice.
Task 3. Solutions o Group 1 - What would assist you to take your ARV medicines during your pregnancy and/or breastfeeding? - Prompt: What would help other women pregnant women living with HIV to take their ARV treatment? o Group 2 What would assist you to engage in care, including after you have had your baby? Prompt: What would help other pregnant women living with HIV to engage in care? o Draw, write down or explain what would have assisted you.
Task 4. Specific questions for discussion Lifelong treatment from pregnancy even if you are feeling well o What do you feel the benefits would be? o What would be your concerns? o How should these options be offered to women? o How would you feel if you were told that you had to start taking lifelong treatment beginning in pregnancy when you are feeling well? o How would you feel if you were given a choice to decide between option B or option B+? o What support and information would you need to make the right decision for you? o How long would you need to think about this option and make a choice? In order to support these new options, what changes do you think would be helpful to introduce in the community? How could the community better support women in making these choices and in changing perceptions about the need for lifelong treatment? What changes would need to be made at the facility level (staffing and patient flow) if more women will require lifelong treatment?
o o o
Pre-workshop survey Parents and caregivers of children living with HIV on ART workshop questionnaire Circle as appropriate I am a: Female Male I am: ___________ years old Where do you live: City Suburb Township Rural area Other____________ (please state)
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I am the:
Parent
Caregiver
My child is: ______________ years old Does the child live with you? Always Sometimes Not often 6 months – 1 year Don’t know
How long has your child been on ART for? less than 6 months 1–2 years 2–4 years Longer than 4 years Which ARVs does your child take? ______________________ Has your child changed their ART? Yes No How long does it take you to get to the clinic?: Over 1 hour 0–15 minutes
15–30 minutes 30 minutes – 1 hour
Pregnant women living with HIV workshop questionnaire Circle as appropriate I am: ___________ years old Where do you live: City Suburb Township Rural area Other____________ (please state) This pregnancy is my: I tested HIV positive: During a previous pregnancy I take ARVs: First Second Third Fourth More than four During this pregnancy
Before I become pregnant During this delivery
For my own health
To prevent transmission to my baby During this pregnancy During a previous pregnancy
I started my ARVs: Before I became pregnant During this delivery
I have attended: All of my appointments Some of my appointments Only a few appointments No appointments For this current pregnancy, what was or will be your feeding choice? combination How long does it take you to get to the clinic? Over 1 hour 0–15 minutes Exclusive breastfeeding Formula/bottle 15–30 minutes 30 minutes – 1 hour
Informed consent Parents and caregivers of children living with HIV on treatment consent Date: Hello, I am working on behalf of the World Health Organization. I am helping them to explore the values and preferences of parents and caregivers of children living with HIV receiving ARV treatment as part of developing international guidelines. We would like to organize two workshops of focus group discussions with 20 parents and caretakers of children living with HIV. You are being invited to consider if you would like to be a part of a workshop. If you want to participate, you will spend an afternoon or morning taking part in a group workshop with about 10 parents and caregivers of children living with HIV receiving ARV treatment. The workshop will involve activities and a discussion and will be held at _______________________ The aims of the workshop are: • to gain parents’ and caregivers’ perspectives on starting, switching and maintaining their child on ARV treatment;
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to have a better understanding of what aspects of starting, switching and maintaining their child on ARV treatment are important; and to explore issues of what would make starting, switching and maintaining their child on ARV treatment more manageable.
Being a part of this workshop is up to you. If you participate, you can change your mind at any time. You can decide how much information you would like to share. No one will be upset if you don’t want to participate, if you choose to stop or if you refuse to answer some questions. Everything in this workshop will be kept strictly confidential. Your names will not be used in any reports and you can even give an alias name to introduce yourself. You may know some of the other participants in the group, but we ask that you protect their confidentiality as they should protect yours. Unfortunately, we are unable to guarantee this and therefore request that you not disclose any sensitive or personal information of your own. Once the workshop is finished, we will let the World Health Organization know what we discussed. We hope that this will help to further develop services that are appropriate and will support the needs of children living with HIV. However, it is important to note that changes to your local services are not up to us, but participating in this workshop will ensure that your thoughts and opinions are heard. You will not be paid for participating, but you will be given the equivalent of R30 to cover your travel costs. We will also serve snacks and some drinks at the workshop. If you have any questions or are unsure of anything to do with the workshop, you can contact us at: WHO Country Office Address ----------------------------------------------------------------------------------------------------------------Consent form for the parents and caregivers of children living with HIV receiving treatment Yes, I want to take part in this workshop. I ___________________ have been informed about the workshop entitled: Values and Preferences of Parents and Caretakers of HIV-positive Children on Treatment. I understand the workshop that has been explained to me. I have been given an opportunity to ask questions about the workshop and have had them answered clearly. I understand that my participation in this workshop is voluntary. I understand that I can change my mind to participate and no one will be upset at me. I understand that I do not have to answer any of the questions if I do not want to. I understand that everything I say will be kept private and that my name will not be used in any reports. I understand that, if I have any questions or concerns about the workshop, I can contact the facilitator at any time. I understand that the workshop discussions will be recorded for quality purposes. I understand that if I have any questions or concerns about my rights as a workshop participant, or if I am worried about the workshop or the facilitators, then I may contact: WHO Country Office ____________________ ____________________ Signature of participant Date ____________________ Signature of witness _____________________ Date
____________________ _____________________ Signature of translator (where applicable) Date
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WHO/HIV/2013.58© Consent form for values and preferences of pregnant women living with HIV
World Health Organization 2013
Date: Hello, I am working on behalf of the World Health Organization. I am helping them to explore the values and preferences of pregnant women living with HIV as part of developing international guidelines. We would like to organize two workshops of focus group discussions with 20 pregnant women or those that have given birth in the past year who are living with HIV. You are being invited to consider if you would like to be a part of a workshop. If you want to participate, you will spend an afternoon or morning taking part in a group workshop with about 10 pregnant women or those that have given birth in the past year who are living with HIV. The workshop will involve activities and a discussion and will be held at _____________ The aims of this workshop are: • to gain HIV-positive women’s perspective of receiving ARV treatment during pregnancy and breastfeeding; • to have a better understanding of what aspect of receiving ARV treatment during pregnancy and breastfeeding are important; and • to explore issues of what would make receiving ARV short-term or lifelong treatment during pregnancy and breastfeeding more acceptable. Being a part of this workshop is up to you. If you participate, you can change your mind at any time. You can decide how much information you would like to share. No one will be upset if you don’t want to participate. If you feel that the information discussed during the workshop is upsetting you or your baby, you can choose to stop your involvement. This will not have any impact on the services you receive at the hospital. A counsellor will also be on standby if you would like to discuss things further. Everything in this workshop will be kept strictly confidential. Your names will not be used in any reports and you can even give an alias name to introduce yourself. However if something is said that makes me concerned about your safety, such as someone causing you physical harm, I may have to talk to someone about it, but I will not do this without discussing it with you first. You may know some of the other participants in the group, but we ask that you protect their confidentiality, as they should protect yours. Unfortunately, we are unable to guarantee this and therefore requested that you not disclose any sensitive or personal information of your own. Once the workshop is finished, we will let the World Health Organization know what we discussed. We hope that this will help to further develop services that are appropriate and will support the needs of pregnant women living with HIV. However, it is important to note that changes to your local services are not up to us, but participating in this workshop will ensure that your thoughts and opinions are heard. You will not be paid for participating, but you will be given R30 to cover your travel costs. We will also serve snacks and some drinks at the workshop. If you have any questions or are unsure of anything to do with the workshop, you can contact us at: WHO Country Office ----------------------------------------------------------------------------------------------------------------Consent form for pregnant women living with HIV Yes, I want to take part in this workshop. I ___________________ have been informed about the workshop entitled: Values and preferences of pregnant women living with HIV I understand the workshop that has been explained to me. I have been given an opportunity to ask questions about the workshop and have had answered clearly. I understand that my participation in this workshop is voluntary. I understand that I can change my mind to participate and no one will be upset at me. I understand that I do not have to answer any of the questions if I do not want to. I understand that everything I say will be kept private and that my name will not be used in any reports. I understand that, if I have any questions or concerns about the workshop, I can contact the facilitator at anytime.
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I understand that the workshop discussions will be recorded for quality purposes. I understand that if I have any questions or concerns about my rights as a workshop participant, or if I am worried about the workshop or the facilitators, then I may contact:
WHO Country Office ____________________ Signature of participant ____________________ Signature of witness ____________________ Date _____________________ Date
____________________ _____________________ Signature of translator (where applicable) Date
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