By Caring for Myself I can Care Better for my Family: A Health Education Intervention for Moms Sandy Magaña, Elizabeth Miranda, Marlen Garcia, Henan Li Department of Disability and Human Development People involved Community partners: o El Valor- Gloria Curtin & Magdalena Droira o Community Support Services- Rocio Perez Promotoras: o El Valor- Norma Uscanga, Claudia Miranda, Leticia Ramos, Maria Ochoa, Margarita Barraza, Julia Gonzalez o CSS- Myriam Bucio, Maria Resendez, Isela Marquez Students: o Madison- Elizabeth Miranda, Rebecca Paradiso, Linda Serna o UIC- Henan Li, Marlen Garcia Overview of presentation Brief background Theory and promotora model Program curriculum Training with promotoras Results from home visit model Results from group model Qualitative findings Next steps Background More than half of adults with developmental disabilities live with their families o Especially true among Latino families Research shows that Latina moms of children with IDD compared to Latina moms of TD children are o More likely to have higher rates of depression o More likely to have chronic health conditions such as arthritis and heart problems o Less likely to see a doctor for themselves Supportive services for Latina mothers of children with IDD Supportive services are primarily aimed at the child with IDD Latina mothers often identify their care giving role as their primarily responsibility Need for cultural interventions that help Latina mother to focus on their own health care needs Self-Efficacy Theory o Through health education, participants feel more confident in carrying out behavioral change leading to changes in health behaviors (Bandura) o Includes: • • • • Performance accomplishment Vicarious experience Verbal persuasion Emotional states Promotora de Salud Model Mother of child with IDD Understand host community Encourages performance accomplishment Bilingual: Communicati -on Bridge Engages in modeling Uses Social Persuasion Health education intervention content Eight week health education program • Session One: Taking care of oneself and pre-test, • Session Two: Health care • Session Three: Well-being activity • Session Four: Nutrition • Session Five: Exercise • Session Six: Stress and depression • Session Seven: Including others • Session Eight: How to sustain growth, post-test and celebration Program: content o Manual • Emphasized dialogue and was culturally relevant. Example, how can we make our traditional recipes healthier De acuerdo a MiPlato, aproximadamente la mitad de lo que usted come en un día deben ser frutas y verduras. A lo mejor esto le suena un poco extraño porque normalmente no comemos los alimentos de forma separada. A lo mejor de la manera que usted come se asemeja más a estos dibujos que contienen un poco de todo. Los 5 grupos que sugiere MiPlato nos ayudará a entender mejor la forma en que nos alimentamos. Promotora Training 10 promotoras Group Format 14 hours/ 3 half days Review content on the manual Review strategies for home visits Promotora dual role: promotora and participant Promotoras received a stipend for the training and for each completed case Communication between promotoras and Magdalena Research questions 1) Did participants increase their health related self-efficacy between pre and post-test compared to the control group? Did participants improve their health behavior (exercise, nutrition, and self care)? 3) Did participants improve caregiver self-efficacy? 2) 4) Did participants reduce their levels of psychological distress as measured by depressive symptoms and caregiver burden? Methods Participants: o 100 Spanish-speaking mothers of youth and adults with IDD. • By random assignment, 50 were placed in intervention and the other 50 in control group (wait list) • 90 completed (10% attrition) o At least 40 years old o or child 8 years or older Maternal Characteristics Intervention (N=42) 36 (78.3%) 10 (21.7%) 40 (80.0%) 10 (20.0%) 0.04 Years of Education (SD) 8.1 (3.2) 6.9 (2.8) 1.7 21 (43.8%) 27 (56.3%) 15 (30.0%) 35 (70.0%) 2.0 Employed (%) Married or living together (%) Foreign born (%) Ethnicity (%) Mexican descent Other Latino Good/excellent health (%) Child Characteristics Mean age (SD) Percent male Diagnosis (%) Autism Down Syndrome Cerebral Palsy Intellectual disability Other 45.1 (8.3) Test value+ Mean age (SD) Level of education Less than High School High School or more Income (%) 0 to $19,999 $20,000 and up 43.9 (9.4) Control (N=48) -0.9 24.5 % 46.9% 5.4* 38 (76.0%) 41 (82.0%) 0.5 92.0% 96.0% 0.7 49 (98.0%) 1 (2.0%) 2.0 22.0% 3.0 18.0 (8.8) 64.0% -0.4 0.4 47 (94.0%) 1 (6.0%) 38.0% 16.9 (7.6) 58.0% 12 (28.6%) 7 (16.7%) 15 (35.7%) 6 (14.3%) 2 (4.8%) T-test , F-test or Chi Square values. *p < .05 5 (19.2%) 7 (26.9%) 10 (38.5%) 3 (8.3%) 1 (3.8%) 1.8 Methods Design and Quantitative Analysis o Pre and post- test o Paired-sample t-test o Multivariate Analysis of Covariance Measures o Health-related self-efficacy • Chronic Disease Self-Efficacy Scales, 10 items, 1-10 o Depressive symptoms • Center for Epidemiology Studies Depression Scale CES-D, 20 items, 0-3 with reverse items o Caregiver Appraisals • 15 items, 0-3 o Positive health behaviors • Adaptation of the Family Habits Scale, 36 items, 0-3 Results: 1) Did participants increased their health-related self-efficacy between pre and posttest? Pre-test Post-test 89.4 100 74.2 74.2 80 74.6 60 40 20 0 Intervention Control Note: Results from MANCOVA. error bars indicate the 95% CI Results: 2) Did participants improve their health behavior (exercise, nutrition, and self care) between pre and post test? 80.0 Exercise Habits Self-Care Habits Nutrition Habits 60.0 40.0 40.6 20.0 33.1 34.8 16.4 10.9 0.0 9.4 14.5 Pre-test Post-test Intervention 34.2 11.4 12.4 8.8 10.5 Pre-test Post-Test Control 2a) Did participants improve their EXERCISE health behaviors between pre and post test? 20 15 10 14.5 5 9.4 8.8 10.5 0 Intervention Pre-test Control Post-test Note: error bars indicate the 95% CI 2b) Did participants improve their SELF CARE health behaviors between pre and post test? 20 15 10 16.4 5 11.4 10.9 12.4 0 Intervention Pre-test Control Post-test Note: error bars indicate the 95% CI 2c) Did participants improve their NUTRITION health behavior between pre and post test? 60 40 20 40.6 34.8 33.1 34.2 0 Intervention Pre-test Control Post-test Note: error bars indicate the 95% CI Results: 3) Did participants improve caregiver self-efficacy between pre and post test? 20 15.8 16.5 16.1 15.2 0 Intervention Pre-test Control Post-test Note: error bars indicate the 95% CI Results: 4) Did participants reduce their levels of psychological distress (CES-D score) as measured by depressive symptoms between pre and post-test? 25 20 15 10 19.0 15.1 5 14.3 10.1 0 Intervention Pre-test Control Post-test Note: error bars indicate the 95% CI Results: 4) Did participants reduce caregiver burden between pre and post-test? 20 15 10 14.8 14.9 13.7 14.0 5 0 Intervention Pre-test Control Post-test Note: error bars indicate the 95% CI Group format Conducted at Beth Lacey Center o Part of Community Support Services o Collaborator Rocio Perez Pre and post-test 1 group design Participation o 23 participants enrolled o 15 participants completed program o 35% attrition rate Group format results Health habits pretest postest 63.7 37.3 12.2 9.3 exercise habits 12.7 51.6 32.3 8.7 selfcare habits nutrition overall More group results Health related self efficacy Depressive symptoms 90 30 80 25 70 60 20 50 pretest postest 40 30 pretest postest 15 10 20 5 10 0 0 health efficacy depress Caregiver appraisals-group 14.6 14.4 14.2 14 13.8 pretest postest 13.6 13.4 13.2 13 12.8 cg self efficacy cg burden Qualitative Results: Evidence of performance accomplishment Engaging in activities Positive outcomes Increases SE “ Me ayudo a comer mas frutas y ejercicios para relajarme un poco o quitarme el estres.” (Participante de Chicago) “It helped me to eat more fruits and exercises that relaxed me or relieve stress.” (Chicago Participant) Evidence of vicarious experience Observing others perform activities Learning through others’ experiences Offering suggestions that have worked in the past Promotoras who also had children with disabilities often shared how they accomplished the activity in their lives. “Las conversaciones con la promotora me sirvieron de mucho porque aprendi que yo soy muy necesaria en la vida de mis hijos especiales y que debo cuidarme para que ellos esten bien.” (Participante de Chicago) “The conversations with the promotora helped me a lot because I learned that I am needed in the lives of my sons with special needs and that I have to take care of myself so they can be well.” (Chicago Participant) Evidence of emotional states Reducing stress and depression helps SE Can effect perceived selfefficacy in coping with difficult situations Ability to express feelings with promotora “Por medio de este programa tiene uno la oportunidad de compartir lo que uno siente y saber que nos pueden escuchar.” (Participante de Chicago) “Through this program, one has the opportunity to share what one feels and know that they can listen to us.” (Chicago Participant) Evidence of verbal persuasion Encourage participants to believe they can take control “ Es importante darme tiempo para mi y hacer cosas que me gustan sin sentir que dejo de lado a mi familia.” (Participante de Chicago) “It is important to have time for me and do things I like without feeling that I am putting my family to the side.” (Chicago Participant) Next steps Examine follow-up data Most of the control group has participated in intervention 2 additional follow-up points with all participants Dissemination Make manuals and materials professional and available to other organizations Let other orgs know about the intervention and potential training to implement Ideas? Questions and Comments? Support provided by Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago (NIDRR Grant #H133B080009)