2. Carmen D. Zorrilla, MD Lydia Santiago, PhD Lyllymar Colon Rodriguez, Ann Marie Scorsone, Georgina Silva-Suárez, A TRAINING OF THE TRAINERS BASED ON 20 YEARS OF EMPOWERMENT WORK WITH LATINAS:

3. Format of the Training of the Trainers Full Group Sessions: Explain the CEMI’s Empowerment Model CEMI as a Case Study Five (5) Small Work Groups: Develop Action Plan Design Workshop

4. Goals and Objectives Goal: To train trainers in the necessary skills to create sustainable empowerment group programs that foster the development of peer mentoring at their home sites. Objectives (participants will) : Build and expand upon their networking relationships. Exchange ideas, experiences and strategies about peer group development and empowerment with other participants. Practice various empowerment strategies and techniques that are easy to replicate at their own sites. Apply the CEMI Model of Empowerment to design their own unique empowerment group program (specific to their cultural and logistical needs). Develop a plan of action and identify key players in order to implement their program.

5. Women’s Empowerment Intervention Program Carmen D. Zorrilla, MD Lydia E. Santiago, PhD University of Puerto Rico Medical Sciences Campus

6. AIDS Epidemic in Puerto Rico The Epidemic in P.R. was characterized early by a larger proportion of men who reported injection drug use (IDU) as their main risk behavior, thus facilitating the heterosexual spread to women. Of the total cases reported from Jan. 1981 until June 2008 (N=32,297), a 76% were reported in men and 24% in women. For women, the largest risk category was heterosexual contact (61%) followed by IDU (36%). The proportion of women with AIDS in P.R. has increased from 14.4% of the total cases in 1985 to 22.6% in 1990, to 25.1% in 1998, 24% in 2008.

7. What is CEMI? Maternal Infant Studies Center CEMI is multidisciplinary clinic that provides care to women living with HIV (pregnant and non pregnant). Up to now we have seen 1,700 women at the clinic We continue to evaluate between 45-50 new pregnant women per year

8. “Empowerment” In the Spanish language there is no term that could describe the word empowerment Instead, similar concepts such as power development, apoderamiento, apotestamiento and control rescue have been used to describe empowerment.

9. Community Empowerment Nina Wallerstein defines empowerment as a social action process that promotes participation of people, organizations, and communities toward the goals of increased individual and community control, political efficacy, improved quality of community life, and social justice. Wallerstein (1992)

10. Powerlessness (Wallerstein, 1992) Phisical and Social Risk Factors Living in poverty Low in Hierarchy High Demand: Psychological Physical Low control: perceived actual Chronic Stress Lack of Social Support Lack of Resources Powerlessness Lack of Control Over Destiny Disease

11. Community Empowerment (Wallerstein, 1992) Reduced Social and Physical Risk Factors Sense of Community Increased Participation in Decision Making and Community Actions Increased Empathy Psychological Empowerment Self-Efficacy Political Efficacy Motivation to Act Belief in Group Action Critical Thinking “Concientization”

12. Empowerment Theory and Community Health The models of community empowerment help us understand the process of gaining influence over conditions that matter to people who share neighborhoods, work places, experiences, or concerns.

13. Empowerment We have redefined empowerment as a process of awareness through which women recognize their capacity to achieve individual and social changes This process involves a mental and spiritual awareness that will enable them to focus on their physical, psychological and social aspects For those living with HIV, this is also a survival strategy

14. CEMI(Spanish Acronym) Maternal Infant Studies Center Our concept of health is integral or holistic and we define health as a balance of mind- body-spirit. All of the aspects of a woman’s life and issues are important and need to be addressed as part of the healing process and to provide quality of care. We believe that HIV is a complex disease, thus the need to approach the whole person and not necessarily the biology, the laboratory results or the social issues exclusively.

15. Women’s Empowerment Intervention Program The Women’s Empowerment Intervention Model was developed by Drs. Zorrilla and Santiago with a cohort of women living with HIV. This model incorporate the basic principles of the Bio-psychosocial Model developed by George Engel. As Engel described it, this is a scientific model constructed to take into account the missing dimensions of the biomedical model. The bio-psychosocial Model suggest to engage the patient’s participation in clinical and laboratory studies and to elicit the patient’s cooperation in activities aimed to alleviate distress and/or correct underlying derangements that may be contributing to distress or disability.

16. Women’s Empowerment Intervention Program The Women’s Empowerment Model is based on Freire’s empowerment pedagogy; Bandura’s self efficacy theory and Branden principles of awareness process. Freire’s empowerment pedagogy suggests that the educational process involve an open dialogue between educator and the participant that is interactive rather than a didactic exchange of information. Freire suggests that the learning process is in both directions and from this interaction: both, educator and the participant develop skills for behavior change and also control and power over their own lives. Freire’s, 1970; Bandura, 1986; Branden,1987

17. Women’s Empowerment Intervention Program Bandura’s theory states that to achieve self-directed changes, people need to be given not only reasons to alter their behavior but also the means, resources and social support to do so. Success therefore, requires not only skills but also strong self-belief in one’s efficacy to exercise personal control. The capability of performing certain actions is included. Branden defined the awareness process as the art of “living consciously”. Living consciously is a state of being mentally active, rather than passive. It is also, the willingness to confront facts, pleasant or unpleasant. It is the desire to discover our mistakes and correct them.

19. Women’s Empowerment Intervention Program The initial group consisted of 12 women and a group of 19 was recruited during the second phase of the study. In the 80’s and early 90’s there were no medical treatments for HIV/AIDS, and the efficacy of available therapies was borderline. Therapies consisted mostly on monotherapy. Mortality and progression of disease were on the rise.

20. One of the most dramatic changes noted was the living arrangement. Of the 12 women who participated, seven were currently living with their extended family (mothers, fathers, siblings). Five of them moved on their own during the study period. These women had interiorized the negative messages of society and moved with their family because they though that they would die soon and they wanted to adapt their children to the new environment. Because hope was restored in their mind, their self– esteem was supported and uplifted, they rediscovered themselves as productive, respected; they started again to think about the future. Women’s Empowerment Intervention Program

21. Empowerment and Adherence We developed a research project to determine the impact of the Women’s Empowerment Intervention Model on adherence to treatment

22. Empowerment and Adherence We developed a research project to determine the impact of the Women’s Empowerment Intervention Model on adherence to treatment

23. Internal Motivation “To keep my health” “To prolong my life” “To feel good” External Motivation “For my children” “For my family” “For my partner” Motivating Factors for Adherence to treatment

25. Workshops The Women’s Empowerment Intervention Model consists of a series of six full-day workshops in which multiple Biopsychosocial dimensions are explored within the group and diverse experiential activities are carried out related to the day’s topics.

26. Support vs. Self-Help groups  A self-help group is formed when people who share a common problem create a group to share experiences and assist each other with possible solutions  These groups rely on the knowledge and resources of participants and not on professionals that might not necessarily are experienced in working with the issues Borkman (1999)

27. Support vs. self-help groups  These groups originated to challenge the “order” established by professionals  When the participants “take control” of their group they will develop the skills to take control of their issues and their lives

28. Starting a self-help group  One person should be in charge of facilitating the group. The participants share this task and alternate  An agenda for the next meeting is drafted  Make sure that every person participates and shares the activities

29. Important Rules  Confidentiality  Respect for everyone’s opinions  Listen to each other  Additional rules that the group consider important

30. Measure time, if you must, in lessons learned, not in minutes or hours or years. Brian Weiss Only Love is Real

31. Part Two: CEMI as a Case Study

32. Theme Selection

33. We have two ways in which themes are chosen to make up each group of empowerment: Core themes Participant selected themes Participant’s needs and expectations for each group are collected at baseline From received feedback (participants’ evaluation forms).

34. Examples: Our Core Workshop Themes Meditation: At every workshop we review the basic concept of meditation and practice the skill. A proportion of the first workshop is dedicated to teaching how to focus the mind. Mind-Body-Spirit Connection: We discuss how these three are interconnected and influence each other. We discuss how the biology, spirituality, and mental health relate to our immune system. Healing through Forgiveness: Forgiveness is a process and not an event. We focus on the power of forgiveness and explore unresolved issues. Activities are centralized around the notion that forgiveness leads to healing. Empowerment and Health: Power vs. Oppression: Participants define empowerment for themselves and as a community, in contrast to experiences with oppression. Nutrition: Basic Nutritional information, balanced diet, control of side effects based on diet regulation, cooking techniques, etc…

35. Examples: Our Core Workshop Themes Sexuality, safer sex and sexual negotiation: our reproductive system, intimacy, body image and safer sex practices. HIV 101: basic information about HIV, myths about HIV, transmission information, how HIV acts once its in the body, review of immune system and things that improve our body’s immunity, and a question and answer session with an HIV expert (Dr. Zorrilla) Advanced HIV: more advanced information about HIV, treatment adherence, understanding lab results, genetic mutation, etc… and a question and answer session with an HIV expert (Dr. Zorrilla) Healthy Lifestyles: how positively living helps us to live positively. Things to do to improve the mind-body-spirit connection: healthy communication, exercise, meditation, reducing stress, etc… Peer Groups: we have sessions where we discuss the principles of peer group formation, but then during each workshop we do icebreaker activities that reinforce group/team formation and bonding.

36. Examples: Participant Generated Themes for Activities Healthy Communication Yoga Belly Dancing Massage techniques Disclosure HIV Myths Aromatherapy Living Positive and Positively Living Reiki Self-Esteem and Body Image Stress Management Relaxation Tai-Chi Aerobics Affirmations Treatment Adherence Co-Dependency Understanding your labs

38. For HIV positive women to cultivate a mental and spiritual awareness that enables them to gain greater control of their physical, psychological and social dimensions of the healing process.

39. 1. For participants to attend and actively participate in the workshops. 2. To provide participants a safe space to explore their humanness, to focus on themselves, and to enjoy the process. 3. For participants to develop their meditation skills. 4. For participants to form peer groups that fosters self help, personal control, and independence.

41. Apoderamiento y Adherencia ActividadesRecursos NecesarioMateriales Taller 1 (fecha) MediaciónAnnieDeep Cove Cuerpo-espíritu-menteDra. Zorrilla Dirigir EmocionesDra. Santiago Teatro de Vida: DisclosureDra. Santiago Taller 2 (fecha) MeditaciónAnnieInner Healing Como pensamientos afecto la saludDra. Zorrilla y Dra. Santiago La Importancia de AdherenciaDra. Zorrilla y Dra. Santiago Sanación a través del PerdónDra. Zorrilla y Dra. Santiago Taller 3 (fecha) MeditaciónAnnieDeep Relaxation Biología del sistema inmunológicaDra. Zorrilla VIH/SIDA 101 yDra. Zorrilla VIH/SIDA AvanzaDra. Zorrilla Taller 4 (fecha) MeditaciónAnnieRainbow Auto-imagen y Auto estimaCibel Hilerio SexualidadNirvana Gonzalez Taller 5 (fecha) MeditaciónAnnieMountain Path Estilos de Vida y Salud (R&R)Lyllymar Colon EjercicioDaniel Ramos Nutrición y Terapias Complementario Taller 6 (fecha) MeditaciónAnnieForest Principales de Auto-AyudaDra. Santiago Grupos de Auto AyudaDra. Santiago

42. Programa de Apoderamiento y Salud 31 de Enero de 2006 9:30 - 10:00 Meditación 10:00 - 10:30 Apoderamiento & Salud: Opresión/Poder 10:45 - 12:00 El Proceso de Sanación Mente-Cuerpo- Espíritu: Manejo de Emociones y la Biología de Esperanza Almuerzo 1:00 - 1:30 VIH: El impacto en nuestras vidas 1:30 - 2:45 Teatro de la vida Divulgación del Diagnostico 2:45 - 3:00 Meditación

43. Taller 1: La Conexión entre la Mente, el Cuerpo, y el Espíritu 8:30-9:00 Bienvenida 9:00-9:30 Meditación e Introducción a los Talleres 9:30-10:00 Actividad: Mi Salud 10:00-10:30 El Proceso de Sanación Mente-Cuerpo-Espíritu, 10:30-11:30 Teatro de Vida 11:30-12:00 Grupos de Auto Ayuda -ALMUERZO-

44. 11 de Julio 2007 Reunión I: Introducción a los Grupos de Auto Ayuda 8:30 – 9:00 a.m. Bienvenido 9:00 – 9:30 a.m. Meditación y Rompe Hielo 9:30 – 10:00 a.m. Actividad de Adherencia 10:00 – 11:00 a.m. Grupos de Auto-Ayuda, presentado por la Dra. Santiago 11:00 – 12:00 p.m. Organizando Su Grupo Almuerzo

45. TiempoGrand Ballroom (A)Cadenza (B)Grand Opera (C) 7:30 a.m. Registro y Desayuno (7:30 a.m. – 8:45 a.m.) 9:00 Bienvenida (9:00 a.m. – 9:30 a.m.) Carmen D. Zorrilla, MD 9:30 Auto-Masaje y Aromaterapia (9:30 a.m. – 11:30 a.m.) José López de Arte Oriental Belly Dancing (9:30 a.m. – 11:30 a. m.) D’Arts Studio de Xioana Nieves Sexualidad (9:30 a.m. – 11:30 a. m.) Nirvana González 10:00 10:30 11:00 11:30 Nutrición y Bienestar (11:30 a.m. - 12:30 p. m.) Michael González, PhD. y Jorge Miranda, Pharm.D. 12:00 p.m 12:30 Almuerzo (12:30 p.m. – 1:30 p.m.) 1:00 1:30 Apoderamiento: El próximo paso (1:30 p.m. – 3:30 p. m.) Lydia E. Santiago, PhD Comunicación Efectiva (1:30 p.m. – 3:30 p. m.) Nyrma Ortiz, PhD c Sexualidad ( 1:30 p.m. – 3:30 p. m.) Nirvana González 2:00 2:30 3:00 3:30 Cierre (3:30 p.m. - 4:00 p.m.) Carmen D. Zorrilla, MD 4:00

46. Workshop/Seminar Evaluation Two types of Evaluations Evaluation of the workshop, activity, or group Participant’s evaluate the content, the environment (physical and emotional), logistics, etc… Evaluation of the participants’ achievement in the goals and objectives of workshop, activity, or group Facilitators evaluate participants according to each objective outlined Participants self-evaluate their own participation

47. HOJA DE EVALUACIÓN Fecha: miércoles, 11 de Julio de 2007Actividad: Apoderamiento & Salud, Reunión 1 Lugar: CEMI Por favor, indique abajo cómo le resultó la actividad en términos de: ExcelenteBuenoRegularPobre Ambiente físico Ambiente emocional Organización & Desarrollo de la reunión Conocimientos adquiridos Duración de la actividad ¿Cuál fue la actividad que más te gusto, y porque_____________________________________ ______________________________________________________________________________ ¿Qué nuevo aprendiste? __________________________________________________________ ______________________________________________________________________________ ¿Para futuros talleres que temas te gustaría recibir?_____________________________________ ______________________________________________________________________________ ¿Qué recomendaciones tienes para mejorar nuestras actividades? _________________________ ______________________________________________________________________________ Otros Comentarios: _______________________________________________________________ ¡Gracias por tu participación!

49. The Benefits of Workshop Evaluation Gives participants a voice in the organization and development of their empowerment group, making them stakeholders in the process Provides an opportunity for organizers to understand how certain themes or logistical considerations were perceived. Evaluation process offers facilitators more flexibility, adaptability, and overall program improvement in program design.

51. Recruitment Lessons learned… Word-of-Mouth Flyers Brochures In-service presentations Clinical/Site Staff

54. Retention Lessons learned… Reminder calls Letters Participants and Facilitators choose dates/time of future workshops Evaluations improve workshops Take into account participant suggestions into workshop design

55. Reminder Calls Apoderamiento y Salud NombreTeléfonoNotas Taller 1Taller 2 Taller 3Taller 4 Taller 5

58. Lesson Learned… Donations Companies are willing to donate, and donate, and donate. We’ve received so many beautiful things from local to nationwide to international known companies. The key to getting donations is organization and knowing what you want! We have received: Lunches Workshop Resources, In-Kind Services Product samples, free movie rentals, gift certificates for spa treatments, massages, tanning, professional makeovers, dinner, etc…

59. How do you get donations? 1. Organize yourself: Who can you call? Who have you already called? What do you want? What have you asked for? What did you get? 2. Call companies to introduce yourself, your site, your project. 3. Know what it is you want and ask for it. 4. If applicable, companies may be able to write off donation when they do their taxes. So remind them! 5. Follow-up with letters, thank-you notes, and recognition during the event! Be Prompt with your recognition!

63. Part III: Small Group Work