Departement Gesondheidswetenskappe Faculty of Health Sciences Home-based counseling to enhance adherence to antiretroviral therapy among patients living with HIV Ashraf Kagee

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 Sources: National Department of Health, 2008 UNAIDS/ WHO Working Group 2008 HSRC,

The context: People on treatment In ,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,

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 4

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. 5

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. 6

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. 7

Retention in HIV care at a peri-urban public hospital Number of patients enrolled on treatment since beginning of roll-out 1113 Number of patients retained in the ART programme762 Died or transferred out66 Number of patients that have been lost to follow up % of patients have been retained in care. Almost 1/3 have dropped out. 8

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 9

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? 10

Other mental health problems Substance abuse Anxiety PTSD Psychotic disorders 11

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. 12

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 13

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?

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. 15

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

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. 17

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. 18

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. 19

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

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

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). 22

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, Hotellings T2? 23

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. 24

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