1. Advanced Counseling Training
This session will cover topics in advanced counseling training, in particular, advanced behavior change and developmental considerations specific to conducting counseling with children and adolescents.

2. Learning Objectives
Provide psychoeducation in ways to promote behavior change
Understand models of behavior change
Understand common behavioral and emotional issues contributing to ART adherence difficulties
Learn adolescent brain development factors contributing to adherence difficulties
Learn specific parenting and child skills relevant to adherence counseling for parents and children

3. Outline: Advanced Counseling Training Model
Part 1: Advanced Behavior Change
Meeting People Where they Are: Stages of Change
Encouraging Change Talk
Pros and Cons
Part 2: Developmental Considerations
Adolescent Development and Adherence
Child Adherence: Working with Caregivers

4. Advanced Behavior Change
We will start with advanced behavior change.

5. Model of Change: Meeting People Where They Are
Think about a behavior you want to change. Many times, we go back and forth through the process of changing a behavior and things are not unidirectional, as you can see here in the transtheoretical model of change. This theory posits that health behavior change goes through six stages.
Pre-contemplation: Not seeing a need for a lifestyle or behavior change
Contemplation: Considering making a change but has not decided yet
Preparation: Decided to make changes and is considering how to make them
Action: Actively doing something to change
Maintenance: Working to maintain the change or new lifestyle: temptations and lapses are common
Relapse: No longer practicing the behavior
When working with patients, it is important to understand where their behaviors fall in the model of change. For example, someone in the pre-contemplation phase wouldn’t think ARVs are important, so it will not work to simply tell them to start taking ARVs every day without missing. They will not be ready to commit to that level of change. Instead, we should work through the model of change with patients to ensure that they are prepared to change their behavior and maintain that change.

6. Model of Change: Meeting People Where They Are
Pre-contemplation
Not seeing a need for a lifestyle or behavior change
For example: “Everyone keeps telling me to take my ARVs, but I’m not sure I need them. I feel fine without them.”
Provider’s role: work with their uncertainty.
“I hear you say you are unsure about needing ARVs even though you feel fine. What makes you think you might need them?”
“If you feel fine, why do people tell you it is important to keep taking ARVs?”

7. Model of Change: Meeting People Where They Are
Contemplation
Considering making a change but has not decided yet
For example: “I think I should start taking my ARVs.”
Provider’s role: strengthen their decision to change
“If you start ARVs, what do you think might be better?”
“What makes it feel like now is a good time to start ARVs?”

8. Model of Change: Meeting People Where They Are
Preparation
Decided to make changes and is considering how to make them
For example: “OK, I know I need to take my ARVs, I keep forgetting though. Maybe I can do something to help me remember.”
Provider’s role: help plan change
“When you have remembered to take your ARVs in the past, what has helped?”
“What supports do you have to help you remember to take ARVs?”

9. Model of Change: Meeting People Where They Are
Action
Actively doing something to change
For example: “I’m going to set an alarm to remind myself to take ARVs.”
Provider’s role: support the action
“You’ve chosen a great first step. Can we set the alarm right now?”
“What do you think might get in the way of that working for you?”
“How would you feel if you made that change?”

10. Model of Change: Meeting People Where They Are
Maintenance
Working to maintain the change or new lifestyle. Temptations and lapses are common.
For example: “It is sometimes tempting to say ‘I’ll take my ARVs later’ rather than doing it when I hear the alarm. Sometimes I’m busy.”
Provider’s role: support and plan
“It is hard to keep these changes up. What do you think you could do to keep it up even when other things feel more important?”
“The next time you think ‘I’ll take ARVs later,’ what could you do differently?”

11. Model of Change: Meeting People Where They Are
Relapse
It is common to have periods of relapse. Understanding this is common helps rebound without shame or guilt.
For example: “I started ignoring my alarm clock because I’m so busy until I just turned it off.”
Provider’s role: validate and assess readiness
“It is really hard to keep these changes up. How are you feeling about restarting ARVs now?”

12. Model of Change: Meeting People Where They Are
When providers keep in mind that change rarely happens all at once, but rather with starts, delays, and stops, it makes it easier to stay connected and support people through the process.
If you think about something in your own life and how you have changed a behavior or habit, what made that easier or harder?

13. Change Talk: Steps Recognize disadvantages of status quo
Recognize advantages of change
Express optimism about change
Express intention to change
To help people move from one stage of change to another, these are ways to encourage “Change Talk”. Anytime you hear your patient identifying a desire or action to do something different, there is an opportunity to support these desires. The more someone talks about changing and thinks about changing, the more they will see it as possible and important.
These are steps that you can use to encourage someone to talk more about change.
Note, all the information we are about to review is QUESTIONS. Change will happen when someone speaks about how they want it to happen and why they think it is important. Helping someone discuss change is a much stronger tool than telling someone how to change.

14. Model of Change: Meeting People Where They Are
Pros and Cons
Model of Change: Meeting People Where They Are
Pros
Cons
Changing
Pros of Changing
Cons of Changing
Not Changing
Pros of
Cons of
When working with someone to change behavior, we talk most about those things that are in support of a change (in the green shading): We often focus on what is better about the change (i.e., taking ARVs you will stay healthy) or what is worse about not changing (i.e., not taking ARVs, you will get sick).
When we do this, we neglect those factors that are barriers to change or will be worse if someone changes (blue shading). If someone starts taking care of their health, that takes more time and effort (cons of changing). It increases the likelihood, in the short term, that others will know about their HIV-status. If they don’t change, they can focus on the important things they are already focusing on their life (pros of not changing). It is important to think through all of these factors with the patient so that you both fully understand what support they will need to change their behavior.

15. Model of Change: Meeting People Where They Are
Pros and Cons
Model of Change: Meeting People Where They Are
Pros
Cons
Changing
Pros of Starting ARVs:
long term health, lower risk of transmission
Cons of Changing:
More health appointments initially, side effects
Not Changing
Pros of
Continue to focus time/energy on work/home/family demands.
Cons of
Poor health outcomes, higher risk of transmission
Asking about what is better about not changing or what might be worse/harder/unpleasant if change did happen can often identify barriers that are important to identify and address.
Can you think of anything else we should add?

16. Questions?

17. Developmental Considerations
Next we will discuss developmental considerations that are specific to providing adherence counseling to children and adolescents.

18. What it Takes to Have “Good” Adherence
Planning
Planning
Goal-Directed Activity
Delayed Gratification
Health Understanding
GOOD ADHERENCE
Problem Solving
GOOD ADHERENCE
Motivation
Many different factors are necessary in order to have good adherence. These include (See slide).
Anything else you can think of?
Ability to Manage Distractions
Attention
ANYTHING ELSE?
Memory
Managing Emotions

19. What It Takes to Have “Good Adherence”
Functions of the Prefrontal Cortex
Planning
Goal-Directed Activity
Motivation
Health Understanding
Attention
Problem Solving
Managing Emotions
Delayed Gratification
Memory
Ability to Manage Distractions
All the functions required to achieve good adherence that we just discussed are specific to a part of the brain called the pre-frontal cortex. However, the prefrontal cortex is also the slowest part of the brain to develop.

20. Prefrontal Cortex Development
You can see here that the prefrontal cortex isn’t fully mature until about age 20. This is why adherence is particularly difficult for adolescents. The very skills that they need to have good adherence are still developing. Yet, the adolescent looks grown up and people begin expecting ‘grown up’ decisions.

21. Working with Development
Enhance
Support
It is common for parents of adolescents to say things such as “you should be managing this on your own,” but we know that adolescents can't do this entirely on their own. The struggle is to both support an adolescent at this time AND to support them to learn these skills. Environments rich in experience that involves successful planning, goal setting, attention shifting etc. encourage brains to keep these synaptic connections in the brain and encourage development of the prefrontal cortex. Environments poor in these areas (e.g., ones where other people do everything for the person, or too much is demanded without instruction) will develop more slowly. The job of the counselor is to determine how much support and how much change an individual can handle.

22. Adolescent Adherence: Taking Charge of Your ARVs
Responsibility Shifting
Support and Disclosure
Life Changes
Variable Schedules
These four issues are particularly important to consider when counseling an adolescent on their adherence.

23. Adolescent Adherence: Taking Charge of Your ARVs
“You are the only one living in your body – it is your job to make sure you take ARVs to protect it.”
“Many people have support in taking ARVs, but ultimately it is your job.”
Responsibility Shifting
We should encourage adolescents to take more responsibility in taking their ARVs, while also being understanding that they may still require some adult support.

24. Adolescent Adherence: Taking Charge of Your ARVs
“Who knows that you are HIV positive?”
“Who might a be good source of support for you as you manage your HIV?”
Support and Disclosure
Responsibility Shifting
It is important to encourage adolescents to share their HIV status with a trusted person in their life so that they can get the support they need, be it emotional support from a friend or family member, assistance finding a private place to take medications from a school counselor or nurse, etc.

25. Adolescent Adherence: Taking Charge of Your ARVs
“I hear you saying you have lots of changes in your life right now, how do you think this might affect you taking ARVs?”
“Where are you living? Who lives with you? How might this affect you taking your ARVs?”
“Who currently helps you take your medications? How do you think this might change in the future?”
Life Changes
Support and Disclosure
Adolescence is a time full of physical, emotional, and intellectual growth and change. Adolescents often experience significant changes in their relationships with peers and parents, and may be preparing to transition into new living situations, schools, or workplaces. It is important to acknowledge all of these changes and explore the impacts these may have on taking ARVs.

26. Adolescent Adherence: Taking Charge of Your ARVs
“It sounds like you have a busy schedule! I hear it is important to you to stay healthy to keep this up. How do you think taking your ARVs can fit into your schedule?”
Life Changes
Variable Schedules
Many adolescents are often busy juggling the pressures of schoolwork, jobs, recreational activities, and relationships with family and friends. It is important to prompt them to think about making time in their schedule to take their ARVs.

27. Adolescent Adherence: Who and Why to Tell
Ways to Protect Privacy
Discuss Ways to Decide Who to Share Diagnosis With and When
If Person is in a Relationship
Just a note – this is not a substitute for disclosure counseling, rather, we want to provide some tips for discussing who an adolescent may want to disclose their status to.

28. Adolescent Adherence: Who and Why to Tell
Use an unmarked pill bottle.
Use pill boxes rather than bottles.
Brainstorm places to keep medications where they will be out of sight, but you will see them daily.
Ways to Protect Privacy
Here are some ways to protect privacy.

29. Adolescent Adherence: Who and Why to Tell
“What characteristics do you think makes a good choice for someone to share your status?”
“What are benefits of someone knowing your status?”
“How do you decide whether you can trust someone?”
“How do you tell someone your status?”
“Are you concerned that harm might come to you if you disclose your HIV status?”
Discuss Ways to Decide Who to Share Diagnosis With and When
Here are some sample questions you can ask the adolescent when discussing ways to decide to share their diagnosis with and when it would be an appropriate time to do so.

30. Adolescent Adherence: Who and Why to Tell
“How do you think it might be to tell your partner about your HIV?”
“What might be beneficial for your partner if you were taking your ARVs every day?”
“How do you think your partner might support you to take your ARVs?”
If Person is in a Relationship
If the adolescent is in a relationship, these are some questions you could use to guide your discussion around disclosure with them.

31. Child Adherence: Working with Caregivers
Parent Responsibility
Talking to Children about ARVs
Child Refusal
Remembering
Busy Schedule
Multiple Caregivers
We all know that adults experience many challenges when caregiving for an HIV-positive child, including the following (see slide):

32. Child Adherence: Caregiver Responsibility
It is an adult job to give ARVs
Explore reasons caregiver wants the child to be responsible
What are some reasons parents tell you?
How might you use skills we have talked about today to help a caregiver?
It is important to remember that ultimately it is an adult job to give a child ARVs.

33. Child Adherence: Talking to Your Child About ARVs
Key Teaching Points to Caregivers
It is normal for children to be curious.
It is important to give children truthful information.
What you say, including when you tell them about HIV, will depend on their age and how well they can understand.
Questions to Consider
What have they shared so far?
What questions has their child asked?
What concerns do they have about
sharing?
What might the caregiver think is
helpful?

34. Child Adherence: Child Refusal
Ask: “Sometimes it can be difficult to give children medicines. Why do you think your child is refusing?”
Children can be unpredictable and may refuse to take their medications for any number of reasons, including poor taste, trouble swallowing pills, wanting to play instead, or not understanding why it is important to take them.

35. Child Adherence: Child Refusal and Reinforcement
Reinforcement increases behavior
Consequences reduce behavior
When trying to work to change children’s behavior, it is important to recall that positive reinforcement is more likely to increase the desired behavior, while consequences are more likely to reduce the behavior.

36. Child Adherence: Child Refusal and Reinforcement
Consequences reduce behavior.
Reinforcement increases behavior.
Taking medication is a skill we want to increase.
Skills develop in response to reinforcement, not consequence.
Children who take medicine to avoid a consequence will not develop independent skills and will have more difficulty managing their illness through adolescence and adulthood.
Rather, we want to reinforce the behavior of taking medication so that children develop this skill and can maintain it into adolescence and throughout adulthood.

37. Child Adherence: Child Refusal and Reinforcement
Social Reinforcement
“You are doing a good job keeping yourself healthy!”
“I am proud of you for remembering to take your medication on your own!”
Ear-shotting: Tell someone about your child’s positive behavior where they can overhear.
Other reinforcement can include a small toy, extra play time, or choice of sweet
Establish rules:
First medicine, then play.
Mask the taste of medications:
Mix medicine in a spoonful of honey or jam.
Give medicine with a sweet.
Social reinforcement should be specific regarding the child’s behavior. Instead of “Good Job”, Say “Good job remembering your medication”.
Ear shotting example: (mother to father) “I am so proud of your child for taking his medication so well.”
If additional reinforcement is used, they should be small and chosen with child (choice of dessert, extra play time, small toy)

38. Child Adherence: Child Refusal and Sticker Chart Guidance
Caregivers should create charts with their children
Stickers should be given immediately after doing the desired behavior
Behavior should be clear:
Sticker for taking ARVs
Sticker for not arguing
Sticker for remembering independently
Praise or stickers are often reinforcing enough
If additional reinforcement is used, they should be small and chosen with child (choice of dessert, extra play time, small toy)
Goals should be manageable:
A child who argues every day about medicine gets a treat at the end of the week if he took medicine without arguing 3 days.
A toddler should not be expected to remember ARVs independently.
It should be clear that the sticker, small toy, coin is given to reward the behavior.

39. Summary: Supporting Behavior Change
It is important to understand both behavioral and emotional reasons for adherence problems
Adolescents are going through a unique period of development that requires providers to simultaneously support them and build the skills they need to take care of themselves
Providers must work with parents to think of solutions that will make it better to give their child ARVs every day

40. Role Play: Counseling an Adolescent
Partner A: Provider
Partner B: Joseph
16 years old
Perinatally infected with HIV
Frustrated that he has to take ARVs and often forgets to take them in the morning, so he will skip the day
Has not told any friends that he is HIV+ and wants to start dating
Split into pairs. Use OARS skills and what you have learned about adolescent development to role play an enhanced adherence counseling session.
Encourage volunteers to think about developing a new plan to improve adherence using the model of change.
Remember that adolescents will need support problem-solving and planning, while simultaneously be encouraged to think up solutions that will allow them to manage their medications independently.

41. Role Play: Counseling the Parent of an HIV+ Child
Partner A: Sarah
Mother of Elizabeth, who is 7
Elizabeth has trouble swallowing pills and will get upset when she has to take them
Sarah feels overwhelmed and often gets angry with Elizabeth for struggling to take ARVs every day
Elizabeth typically follows directions well, especially if prompted with getting extra play time
Partner B: Provider
Split into pairs. Use OARS and what you have learned about child development and parenting skills to role play an enhanced adherence counseling session.
Remember that it is important for the adult to be heard while also reminding them that it is their responsibility as a caregiver to give their child medication.
Coach participants to work with the parent to discuss a plan that reinforces the child’s positive behaivors.

42. Questions?