Monica Joy Stanton Koko, M.P.H., Ed.M . Teachers College – Columbia University

1. EMPOWERMENT PROFILES FOR HIV MEDICATION SELF-MANAGEMENT: AN ONLINE INVESTIGATION IDENTIFYING PREDICTORS OF HIGH SELF-RATINGS FOR ADHERENCE—SELF-EFFICACY, STAGES OF CHANGE, SKILLS, SOCIAL SUPPORT, AND ACCESS TO ROLE MODELS Monica Joy Stanton Koko, M.P.H., Ed.M. Teachers College – Columbia University Department of Health & Behavior Studies Program in Health Education mjs2002@tc.columbia.edu ADAP Advocacy Association in partnership with the Community Access National Network 7th annual conference Presentation August 3, 2014

2. At the end of 2010, 6, 650, 000 people were receiving antiretroviral therapy in low- and middle-income countries. This represents an increase of 27%, or 1.4 million people, from December 2009” (WHO., UNAIDS., & UNICEF, 2011, p. 90). • In June 2011, UN member states called for universal access treatment for 15 million people living with HIV/AIDS by 2015 (Nolen, 2012). Universal Access was defined as providing antiretroviral therapy to at least 80% of patients in need of treatment (WHO, UNAIDS, & UNICEF, 2010b). • In 2012, globally an estimated 35.3 (32.2–38.8) million people were living with HIV. An increase from previous years as more people are receiving the life-saving antiretroviral therapy. • In 2012 there were 2.3 (1.9–2.7) million new HIV infections globally, showing a 33% decline in the number of new infections from 3.4 (3.1–3.7) million in 2001. • In 2012 the number of AIDS deaths is also declining with 1.6 (1.4–1.9) million AIDS down from 2.3 (2.1–2.6) million in 2005 (UNAIDS, 2013, p. 4).

3. Nguyen (2007) argued that therapeutic citizenship, which in essence states that these citizens (in this case the HIV infected individuals receiving treatments) form part of a membership (a biosocial grouping of shared identity linked by the biological concept of HIV) in a global community. Each respondent can help us learn something from them and in turn this study may help other individuals better understand self-management with a chronic disease that requires a lifetime of strict medication adherence. Self-Management • An understanding of predictors = • a useful initial intake process • better strategic plan for interventions or educational materials • Overall Lower community viral load = • less resistant strains • less transmission

4. Statement of the Problem • This study addresses is how the ongoing global HIV/AIDS epidemic necessitates attention to the problem of how to ensure people living with HIV (PLHIV) take advantage of the availability of antiretroviral treatment (ART)—and actually take it. • What are the factors related to and best predictors of patients being empowered for successful self-management of HIV medications for high adherence?

5. Argentina’s Field Work • 10 individuals of which 6 gave me access to their daily lives • 4 HIV support group meetings • 25 doctor/patient consultations and a social worker’s intake • Observations in hospital and clinic waiting rooms and several interviews with staff personnel

6. Results from field work • a turning point in their past that helped shape the trajectory of their life, present and anticipated future goals. • thoughts on why they are HIV positive and have accepted their status. • reasons and/or coping strategies they attribute to success at treatment—which include their self-efficacy to handle their living conditions and manage • taking their meds

7. Continued results from field work • living with lower risks (based on principles of harm reduction) • putting themselves back on track if they missed a dose or engaged in higher risk behavior • patterns of reciprocity associated with • the use of HIV combination therapy • other daily routines • important decisions

8. Purpose of the Study Identify the factors related to and best predictors of patients reporting being empowered for successful self-management of HIV medications for high adherence including: • the demographics, including country of origin and country in which they currently reside. • their empowerment profiles for HIV medication self-management, including self-efficacy, stages of change, social support, skills/ability, and access to role models for the performance specific behavior relevant to medication adherence. • to what extent to which they endorse agreement with factors identified in the qualitative preliminary studies data as emergent themes associated with empowerment for successful self-management of HIV medication adherence.

9. Purpose of the Study • those demographic (e.g. age, gender, education, socioeconomic status) and other selected factors (e.g. self-efficacy, stages of change, skills/ability, social support, and access to role models for nine adherence behaviors) related to the dependent/outcome variable of being empowered for successful self-management of HIV medications for high adherence • the best predictors of the dependent/outcome variable of being empowered for successful self-management of HIV medications for high adherence • the themes that emerged from the optional provision of their stories about self-managing HIV medication—whether successful or not, including the process of getting back on track if one ever got off-track with medication adherence

10. Methods • Recruitment was via technology in virtual spaces using http://www.divahealth.org/MedicationStudy/ who responded to brief messages embodied in social networking communications (e.g. Facebook, posting on websites, Twitter, word of mouth--snowballing). • Incentive was achance to win a $300, $200, or $100 prize. • Online recruitment and collection occurred from January 20th 2014 thru March 14th 2014 for the English version; and between February 13th thru March 14th for the Spanish version.

11. Participants A total of 103 were a convenience sample of volunteers who responded tothe social marketing campaign, provided informed consent and met the eligibility criteria. • Are you age 18 or above? Yes___ No____ • Are you able to read on a 12th grade level in either English or Spanish? Yes___ No____ • Are you HIV positive? Yes ___ No___ • Were you prescribed medication for HIV—whether called combination therapy, an HIV medication cocktail, HAART, or ART—at least 3 months ago? Yes ___ No___ • Are you able to devote about 30 minutes to this study at this time? Yes___ No____

12. Results for Research Questions

13. 1-Demographics of the country in which they currently reside by language the took survey? Completed Surveys (N= 103) & language taken in English was 62.0% (n=64) & in Spanish was 38.0% (n=39)

14. 1-Demographic profile of Respondents' • The majority were Males 78% (n=75.7) • Mean age approximately 45 years old • Mostly White/Caucasian/European (67%, n = 69), followed by Hispanic/Latino (28.2%, n=29) • Mean income of the participants was between $30,001 to $40,000 • The majority homosexual 68.6% (n=70) • Living with a partner 49.5% (n=51) • 61.2% had some college or more education

15. 1-HIV Profile of the Respondents’ • The majority (81.6%, n=83) reported an undetectable viral load, and CD4 count of 350-499 • Mean time since their HIV diagnosis was between 12-13 years • Mean Time since on HIV medication was between 8-9 years • The vast majority (93.2% to 88.3%) had received comprehensive physician education on taking their medication

19. 3-What were their empowerment profiles for HIV medication self-management for self-efficacy for the performance specific behavior relevant to medication adherence? Global Empowerment Profile for HIV Medication Self-Management— self-efficacy for this sample (N=103) was 5.427(min=3.11, max 6.0, SD=0.734), showing the entire sample was between 80 and 100% confident in their overall self efficacy. 1) lowest score for 0% confident; 2) low score for 20% confident; 3) somewhat low score for 40% confident; 4) somewhat high score for 60% confident; 5) high score for 80% confident; 6) highest score for 100% confident; and for some behaviors the option of Not Applicable was given as a choice.

20. 3-What were their empowerment profiles for HIV medication self-management for stages of change for the performance specific behavior relevant to medication adherence? Global Empowerment Profile for HIV Medication Self-Management— stages of changefor this sample (N=103) was 4.089 (min-1, max 5.0, SD=1.001), indicating sample as a whole was in the action stage for HIV medication self-management——taking action for less than 6 months for the performance of adherence behavior. 1)lowest score pre-contemplation stage; 2) low score for contemplation stage; 3) middle range score for preparation stage; 4) high score for action stage; 5) highest score for maintenance stage and for some behaviors the option of Not Applicable was given as a choice.

21. 3-What were their empowerment profiles for HIV medication self-management for skills/ability for the performance specific behavior relevant to medication adherence? Global Empowerment Profiles for HIV Medication Self-Management—Skills/Ability mean score for this sample of (N=103) was 5.203 (min-2.33, max -6.0, SD =0.922), indicating the sample as a whole was closest to very good for skills/ability to perform the nine target behaviors, overall. Level of ability range from 1) very poor; 2) poor; 3) fair; 4) good; 5) very good; 6) Excellent; and for some behaviors the option of Not Applicable was given as a choice.

22. 3-What were their empowerment profiles for HIV medication self-management for social support for the performance specific behavior relevant to medication adherence? Global Empowerment Profiles for HIV Medication Self-Management—social support mean score for this sample of (N=103) was 4.778 (min 3.11, max 6.0, SD=1.349), suggesting the sample as a whole experienced closest to a very good level of social support for performing the nine target behaviors, overall. Level of ability range from 1) very poor; 2) poor; 3) fair; 4) good; 5) very good; 6) Excellent; and for some behaviors the option of Not Applicable was given as a choice.

23. 3-What were their empowerment profiles for HIV medication self-management for access to role models for the performance specific behavior relevant to medication adherence? Global Empowerment Profiles for HIV Medication Self-Management—access to role models mean score for this sample of (N=103) was 4.346 (min- 3.11, max- 6.0, SD=1.607), indicating the sample rated their access to role models for performing the nine target behaviors as good. Level of ability range from 1) very poor; 2) poor; 3) fair; 4) good; 5) very good; 6) Excellent; and for some behaviors the option of Not Applicable was given as a choice.

24. 4-To what extent do they endorse agreement with factors identified in qualitative preliminary studies data? Global score for the Empowerment for Successful Self-Management of HIV Medication Adherence mean score for the sample (N=103) as a whole was 4.31 (Min 1, Max 5, SD = .575), indicating the sample had between a good and very good level of self-management of HIV medication adherence. 1) disagree a great deal; 2) I disagree 3) Undecided; 4) I agree; and 5) I agree a great deal.

25. 5-How were the demographic (e.g. age, gender, education, socioeconomic status) and other selected factors on PART II: EP-HIV-MSM-SE-SOC-SA-SS-RM-A-45) related to the dependent/outcome variable of being empowered for successful self-management of HIV medications for high adherence? Pearson’s correlations was used, the relationships were determined between the study outcome/dependent variable and selected independent variables (age, income, education, time since diagnosis, time since on HIV meds, higher level of CD4 count, physician education rating), as well as with each of the five subscales of Part II: EP- HIV-MSM-SE-SOC-SA-RM-A-45

28. Note: There were a total of 12 comparisons via Pearson Correlations. Thus, the higher Bonferroni Adjustment Significance level was used (.05/12 = .004).

29. 6-What were the best predictors of the dependent/outcome variable of being empowered for successful self-management of HIV medications for high adherence?

32. Open ended questions in online survey The Prompt. The following prompt was provided to all participants (n=103), while 76 responded to it: Do you have a story tell? Can you share what has made you feel like you are successful in managing your HIV medication? Or, can you share what has made you feel like you are not so successful in managing your HIV medication? Or, can you share about something happening to throw you off track so you were not taking your medications the way you were supposed to take them? Or, can you share about something you did or thought about that helped you get back on track, once again? Please share it briefly.

33. What themes emerged from the optional provision of one’s story about self-managing HIV medication—whether successful or not, including the process of getting back on track if one ever got off-track with medication adherence? MAIN THEMES I-Experiences with Having to be Adherent to ART II-Patient/Doctor Relationship as it Relates to HIV Medication Adherence III-Daily Regimen and Outcomes as They Relate to HIV Medication Adherence IV-Attitudes Toward HIV Medication Adherence V-Resilience and Protective Factors

35. Turning points in the past and/or goals for the present and/or future 42.1% (n=32). Under main theme V-Resilience and Protective Factors • “Being HIV positive changed my life. At first, I was sad and depressed. But I learned to get up and found my purpose. And that is to continue living and now... To also help other PLHIVs and spread awareness to fight stigma. We can make a change. We can all help” (P-55). • “en un principio no sabia q era el vih ni como convivir con el, pero poco a poco me fui empoderando sobre el Vih/Sida hasta q me convertí en un activista ya q quiero cambiar todo sobre estigma y discrimacion... tengo una pareja sero discordante es Medico....” (P-101).

36. ART as a life line 32.9% (n=25)Under main theme III-Daily Regimen and Outcomes as They Relate to HIV Medication Adherence • “I ingrained it into my head that every time I miss a dose, I die a little and I do not want to die because I have so much to live for” (P-1).

37. V-Resilience and Protective FactorsDeveloped resistance and/or toxicities and/or bad side effects 27.6% (n=21)III-Daily Regimen and Outcomes as They Relate to HIV AdherenceART as a life line 32.9% (n=25)I-Experiences with Having to be Adherent to ARTHaving to change medications once or more times 9.2% (n=7)III-Daily Regimen and Outcomes as They Relate to HIV Medication AdherenceImprovement in clinical condition as well as in CD4 and Viral load - motivates 19.7% (n=15)IV-Attitudes Toward HIV Medication AdherenceNeed to do strict adherence 14.5% (n=11)III-Daily Regimen and Outcomes as They Relate to HIV Medication AdherenceNone to minimal side effects 9.2% (n=7)

38. Continued • I am a pre-HAART AIDS survivor who almost died more than once. I had one foot in the grave in 1996, but was able to hang on long enough to begin the new anit-retroviral therapies that became available. I saw hope for the first time in many years. My t-cells went up my viral load eventually got undetectable, though it took several combos and years. I began to feel and look better. My gratitude for this new found health is very strong, though I know I'm not cured, I will be very vigilant in taking my meds. I never miss my bloodwork and always take my meds when I'm supposed to. I've become resistant to certain classes of meds and am on a combination of Kaletra and Epzicom now for about 5 years. Is working well, with minimum side effects, so dont want to mess that up. And that is why I am very adherent with my meds and will always be. GRATITUDE and better health for however long I have left (P-3).

39. V-Resilience and Protective FactorsSocial support that accepts the respondent having HIV26.3% (n=20)Social network members have HIV and/or generativity9.2% (n=7) • “Having a loving partner and good, supportive friends has also been important. During my working life I worked as a social worker in the area of gay men's health and now, in retirement, I volunteer in the HIV sector. Being connected to the community and being totally out as an HIV-positive gay man in this way makes it easy to live with HIV and manage it well” (P-58).

40. Ongoing positive patient-doctor relationship 22.4% (n=17) Under main themeIII-Daily Regimen and Outcomes as They Relate to HIV Medication Adherence • “I am successful managing my HIV infection because I only have to take one pill a day. this comes very normal to me it is almost like taking a vitamin I see my doctor every 3 months he does my blood work and I move on with my life successful, the way things are going one day I'll wear a patch, and that will be true treatment progression” (P-56).

41. Implications • This study’s findings highlight the value in approaching a chronic disease such as HIV and the behavior of self-management of HIV medications for adherence via the framework of empowerment. • Health educators would be advised to work with patients, especially those with low levels of literacy • Health educators may need to design easy to understand materials—whether brochures, e-health/m-health short videos, or motivational interviewing mock interviews in videos that address for ART medication: • why to take their medication • when they needed to take them • what to do if a dose was missed • possible side effects

42. Implications • Health educators would also be advised to cover all of the 9 areas or 9 adherence behaviors for which patients, ideally, have high self-efficacy, are in an action stage for performing, have high skill/ability, good social support, and good access to role models for performing. • Specifically, health educators need to design health education materials (i.e. whether brochures, e-health/m-health videos, or motivational interviewing mock interviews in videos)

43. Recommendations • Engage in a line of research using two tools at the core of the study: • Part II—Empowerment Profiles for HIV Medication Self-Management—Self-Efficacy, Stages of Change, Skills/Ability, Social Support, and Role Models for Adherence • Part III—Empowerment for Successful Self-Management of HIV Medication Adherence scale • Create e-health or m-health brief videos

44. Limitations • Limited to those with computer and Internet access were able to participate, or those with smart phones. • The use of self-reported data. • No measure of social desirability was utilized. • An online international sample of convenience. • Principal Investigator’s network in Argentina and how snowballing occurred. • Incentive of a prize in countries where income is low may have led to bias among participants.

45. References • WHO.,UNAIDS., & UNICEF. (2011). Global HIV/AIDS response: epidemic update and health sector progress towards universal access: progress report 2011. World Health Organization, Geneva, Switzerland. Retrieved fromhttp://whqlibdoc.who.int/publications/2011/9789241502986_eng.pdf • WHO, UNAIDS and UNICEF (2010b) “Towards Universal Access” on HIV/AIDS Global Launch of the 2010 Report. Key Facts: Progress in low-and Middle –income countries by Region. September 28, 2010. World Health Organization, Geneva, Switzerland. Retrieved from http://www.who.int/hiv/pub/2010 progress report/key_facts_en.pdf • UNAIDS (2013, November) Global report: UNAIDS report on the global AIDS epidemic 2013. (JC2502/1/E).Joint United Nations Programme on HIV/AIDS: WHO Library. Retrieved from http://www.unaids.org/en/media/unaids/contentassets/documents/epidemiology/2013/gr2013/UNAIDS_Global_Report_2013_en.pdf