Home-based counseling to enhance adherence to antiretroviral therapy among patients living with HIV

1. Home-based counseling to enhance adherence to antiretroviral therapy among patients living with HIV Ashraf Kagee

2. The context: Prevalence of HIV • HIV prevalence in SA is very high: • 28% of women attending antenatal clinics • 11% of general population are living with HIV • The national roll out of ART started in 2004. Sources: National Department of Health, 2008 UNAIDS/ WHO Working Group 2008 HSRC, 2005

3. The context: People on treatment • In 2007 460,000 on treatment • Estimated national coverage was 28% (UNAIDS). • Coverage will increase over the next few years. Sources: SA National Department of Health, 2008 UNAIDS/ WHO Working Group 2008 Western Cape Department of Health, 2006, 2007.

4. Antiretroviral Treatment • The mere provision of ART may be insufficient for patients to make gains in terms of health status. • Close to 95% adherence is required for adequate viral suppression. • Two levels of adherence: • clinic attendance (retention) • pill-taking

5. Poor adherence can result in: • Increased viral load; decreased CD4 count. • More rapid disease progression. • Increased number of opportunistic infections. • Slower recovery time. • Decreased QOL for patients and families. • Increased mortality, and effect on families and economy • Wastage of resources: consultations, drugs, etc. • Worker absenteeism – due to illness. • Development of drug-resistant strains of HIV.

6. What is adherence? • Dose adherence - number and proportion of doses taken. • Schedule adherence - adherence to doses taken on time. • Dietary adherence - doses taken correctly with food. • Adherence to care - attendance of clinic appointments.

7. Non-adherence • Not taking the medication at all. • Taking the medication at the wrong time. • Taking the wrong doses. • Prematurely terminating treatment. • Self-adjusting doses to modulate side effects. • Not filling prescriptions. • Not attending clinic appointments.

8. Retention in HIV care at a peri-urban public hospital 68.5% of patients have been retained in care. Almost 1/3 have dropped out.

9. What accounts for poor adherence? • Health literacy – treatment in the absence of symptoms • Poor social support • Mental health problems, e.g. depression • Fear of disclosure • Substance abuse • Forgetfulness, no alarm clocks, etc. • Suspicions of treatment • Treatment complexity and side effects • Self-efficacy and motivation

10. Mental health problems • Lots of evidence that depression is associated with poor adherence • Depressed patients are unmotivated, fatigued • Hopelessness about themselves and the future • Diminished ability to think and concentrate which can affect memory • Does treating depression result in good adherence?

11. Other mental health problems • Substance abuse • Anxiety • PTSD • Psychotic disorders

12. Structural factors Structural factors are the social, economic, institutional, political, and cultural domains that collectively make up the social structures that to a greater or lesser extent influence behavior.

13. Some structural barriers • Stigma-related barriers • Relationships with clinic staff • Lack of privacy at clinics • Transport difficulties • Patient waiting times • Disability grants as disincentives • Food insecurity • Migration • Social discouragers

14. RESEARCH QUESTION • Is it practically, logistically, and financially feasible to train patient advocates in enhanced counseling skills? • Can patient advocates implement an enhanced home-based counseling programme? • Is the counseling intervention effective in increasing ART adherence?

15. Study aims • To determine whether it is practically, logistically, and financially feasible for patient advocates to be trained in enhanced counseling skills. • To assess the skill level of trained patient advocates and compare this level to that of untrained patient advocates. • To test whether the enhanced home-based counseling provided by the trained patient advocates is effective in helping patients increase their level of ART adherence.

16. Study design 12 patient advocates 6 receive enhanced training 6 receive no enhanced training PAs work with patients PAs work with patients Clinic attendance Pill counts Viral Load CD4 count Self-reported adherence Assessment of patients’ level of adherence Assessment of patients’ level of adherence

17. Training of patient advocates • Introduction: Setting the scene for the workshop; Introduction to HIV counseling; Emotional distress/ Typical responses to receiving a positive result; Normal distress vs psychiatric disturbance • Recognising psychopathology: Common psychiatric disorders and how to recognize them; Depression and anxiety; Brief assessment of psychiatric disturbance; Suicide assessment; Referral for psychiatric services. • Observational skills: Non-verbal behaviour (facial expressions, body language); Verbal behaviour (selective attention, key words, concreteness vs abstraction); Discrepancies; Practice and role play.

18. Training of patient advocates • Listening skills: Attending behavior; Encouraging, Paraphrasing, and Summarising; Questions; Practice and role play. • Observing and reflecting feelings: The emotional world of patients; Observing emotional intensity; Reflection of content; Reflection of feeling; Practice and Role play. • Integrating listening skills: The basic listening sequence; Searching for positive strengths; Conducting a full interview using listening skills; Positive regard, respect, warmth, concreteness, immediacy, being non-judgmental, authenticity and congruence; Practice and role play.

19. Training of patient advocates • Confrontation: Challenging patients in a supportive fashion; Helping patients move from inaction to action; Practice and role play. • Influencing skills: Interpretation/ reframing; Logical consequences; Self-disclosure; Feedback; Information/ advice/ opinion/ suggestion; Directives; Practice and role play. • Skill integration: The 5 stages of interviewing and counseling: Initiating the session; Gathering data; Mutual goal setting; Exploring alternatives, confronting client incongruities and conflict; Terminating – generalizing and acting on new stories; Practice and role play.

20. Training of patient advocates • Applying counseling skills to increase ART adherence • Role play and feedback • Ethics in counseling

21. Training of patient advocates • Patient advocate self-care and supervision • Problems that might come up when working with clients

22. Evaluation of the intervention • Rating patient advocates skill level, fidelity to the intervention (observation of role plays and sessions with clients). • Evaluation of patients: - self-report (distress, depression, coping, QOL), - adherence (clinic attendance, pill-counts, viral load, CD4 count).

23. Data Analysis • Qualitative assessment of patient advocates experiences of counseling training. • Comparison of ratings of trained and untrained patient advocates following training: t-tests? • Comparison of adherence-related outcomes from pre- to posttest (clinic attendance, self-report, pill-counts, VL, CD4): MANOVA, HotellingsT2?

24. Expected outputs and outcomes • It will be determined whether it is practically, logistically, and financially feasible for patient advocates to be trained in enhanced counseling skills. • It will be determined whether the enhanced counseling provided by patient advocates is effective in increasing adherence levels. • If it is successful, the intervention will be tested in other hospital contexts as well.

25. Other benefits • Research capacity development • Credibility of psychological interventions in public hospital setting