Parents Helping Parents Fight Asthma A Training Manual for Parent Mentors Glenn Flores, MD Research reported on this website was supported by the Robert Wood Johnson Foundation and the Commonwealth Fund AcknowledgementsContributors Glenn Flores, MD Christina Bridon Amanda Schulte, RN Laurie Smrz RN Molly Stevens Vanessa Brown Becca Schultz de Parra Sylvia Torres Ruth Perez UT Southwestern Medical Center Children’s Medical Center Dallas Medical College of Wisconsin Children’s Hospital of Wisconsin Aurora-Sinai Hospital St. Joseph’s Hospital Funders The Commonwealth Fund Robert Wood Johnson Foundation Background InformationAsthma Epidemic Asthma is: Most common chronic childhood disease in the United States The number one reason for missed school days The cause of 1/3 of all child emergency room visits The fourth most common cause of children’s visits to health care providers Racial/Ethnic Disparities Asthma affects minority children more than white children. Only 3% of white children have asthma, compared to 6% of African-American and 11% of Puerto Rican children African-American children are hospitalized for asthma three times more often than white children African-American children are three times more likely than white children to be seen in the emergency room for asthma The death rate from asthma among African-American children is almost five times higher than that of white children Disparities: Poorer Health Care Minority children receive poorer quality medical care for their asthma than white children: Of preschoolers hospitalized for asthma, Latinos are 17 times less likely than Whites or African-Americans to be given a nebulizer for home use Both African-American and Latino children are less likely than White children to be prescribed an inhaled steroid medication, one of the most effective asthma treatments Reducing Disparities Little research has been done on why these disparities exist Parents Helping Parents Fight Asthma Project is the first program to try to eliminate asthma disparities between minority and white children using Parent Mentors Asthma in Milwaukee City of Milwaukee Zip Codes Program OverviewWhat are Parent Mentors? Experienced parents of a child with asthma trained by an asthma nurse specialist and program coordinator about asthma Why Use Parent Mentors? Parents have different experiences and knowledge about childhood asthma than doctors and nurses. Experienced parents can teach what they know to other parents with asthmatic children, give them support, and understand feelings the parents are having Parent mentors can be a key component to effective management of a chronic illness Parent Mentor Responsibilities Support and act as a resource for families with asthmatic children Help families work with doctors for best care Provide education about child’s asthma Assist with talking to doctors, making appointments, finding insurance, and primary care doctor (if needed) Help create a healthier home environment Provide support and network in the community Program Goals Reduce asthma symptoms, attacks, ED visits, hospitalizations, kids’ missed school days, parents’ missed work days Improve quality of life for both parents and children Recruitment At Children’s Hospital of Wisconsin At Aurora Sinai Hospital At St. Joseph’s Hospital Participants randomized into control or intervention group at time of recruitment Participants receive $50 incentive at time of recruitment Children’s Hospital of Wisconsin When Research team available: Child seen in ED Zip code and Race/ethnicity checked by Aurora staff member Approached by Hospital staff; if interested, staff member informs research team Research team determines eligibility, obtains consent, and completes baseline survey and contact form After hours procedures for when research team unavailable: Child seen in ED Zip code and race/ethnicity checked by Hospital staff member Approached by Hospital staff; if interested, staff determines eligibility and obtains consent Staff places completed consent form in study binder Consents picked up by research team; family called to complete baseline survey and contact form Aurora Sinai Hospital When Research team available: Child seen in ED Zip code and Race/ethnicity checked by Aurora staff member Approached by Hospital staff; if interested, staff member informs research team Research team determines eligibility, obtains consent, and completes baseline survey and contact form After hours procedures for when research team unavailable: Child seen in ED Zip code and race/ethnicity checked by Hospital staff member Approached by Hospital staff; if interested, staff determines eligibility and obtains consent Staff places completed consent form in study binder Consents picked up by research team; family called to complete baseline survey and contact form St. Joseph St. Francis Hospitals When Research team available: Child seen in ED Zip code and Race/ethnicity checked by Aurora staff member Approached by Hospital staff; if interested, staff member informs research team Research team determines eligibility, obtains consent, and completes baseline survey and contact form After hours procedures for when research team unavailable: Child seen in ED Zip code and race/ethnicity checked by Hospital staff member Approached by Hospital staff; if interested, staff determines eligibility and obtains consent Staff places completed consent form in study binder Consents picked up by research team; family called to complete baseline survey and contact form Other Recruitment Methods Recruitment displays hung in ED rooms and waiting room, including recruitment letter and contact form. Interested parents take letter and leave contact information. Research team recovers forms and calls families to continue recruitment Patients missed by research or hospital staff are identified using ED log, and sent recruitment letters Nursing staff wears recruitment buttons to catch the eye of potential participants Parent Mentor Assignment For participant randomized into intervention group Research staff pairs participate with Parent Mentor based on race/ethnicity and zip code Parent Mentor is called and given family contact information Mentor and Participant choose mutually convenient time to set up first home visit (within 3-5 days of recruitment) If mentor’s first home visit, research staff accompanies Parent Mentor to make sure both mentor and family are comfortable and to insure quality First Home Visit 3-5 days after recruitment, parent mentor visits participant’s home Parent Mentor provides support to family, and augments the information and care received from healthcare providers First Home Visit Checklist Filled out by mentor 1st home visit and given to research staff Topics covered: Asthma education Trigger identification and avoidance Medications and medication use Insurance / doctor’s visits Social support First home visit checklist Monthly Phone Call by Parent Mentor Parent mentors call each family monthly to complete a monthly telephone checklist. Checklist covered topics: Medications and medication changes Triggers Doctor’s appointments Asthma symptoms Monthly Telephone Checklist Community Meetings Presentation by Asthma Nurse Specialist or Asthma Educator Parent Mentor and family meet Parent Mentor and asthma nurse/educator meet Meal (and dessert) Childcare Time to socialize and network with others in the community in similar situations Meetings held at community sites in the City of Milwaukee Separate meetings held for each community (African-American and Latino) Meetings held several times monthly so participants can choose most convenient dates/ times Second Home Visit 6 Months after initial home visit, parent mentors visit participant’s home again Allows mentor to identify and address additional issues and concerns during second half of families participation Second Home Visit Checklist Filled out during second home visit and given to research staff Topics covered include: Triggers and trigger avoidance Medication and medication use Doctors appointments Second Visit Checklist Other Resources Parent mentors provided with comprehensive Resource Manual with information on issues such as: Smoking cessation Energy assistance Family counseling Reduced price clothing and food Free clinics Parent Mentors, asthma nurse specialists and research staff work closely with families to assist them and improve their overall quality of life, in addition to improving their child’s asthma. Control Group Participants randomized to the control group receive traditional asthma care Evaluation Surveys completed: PAMSES – Parent Asthma Management Self-Efficacy Scale (1st month only) Asthma Satisfaction survey (1st month only) PACQLQ – Pediatric Asthma Caregiver’s Quality of Life Questionnaire Monthly Outcomes PedsQL – Pediatric Quality of Life Inventory Parental Satisfaction (last month only) Participants receive $5 each month for their time for this call Training the TrainerSample Presentation for Training Parent Mentors Following set of 11 slides has been used as presentation to successfully train parent mentors in 2 1/2-day training period Each presentation section corresponds to chapter in Parents Helping Parents Fight Asthma Training Manual for Parent Mentors (slides 44 and 45) Presentation slides address key topics; content derived from Training Manual and can be tailored to your population Why Asthma is Such and Important Issue Asthma in the United States Asthma racial/ethnic disparities Asthma in Milwaukee Keeping Children Out of Hospitals Current research on how to prevent hospitalizations for asthma What to do to prevent children from being hospitalized for asthma Increased risk factors for asthma hospitalization Parents Helping Parents Fight Asthma Project The Parent Mentor Project Goals of the Parent Mentor Project Parent Mentor programs ind the U.S. Your job as a Parent Mentor Confidentiality Asthma Basics Causes of asthma What asthma is What happens during an asthma attack Warning signs of an asthma attack Asthma severity Asthma Medications Types of asthma medications Asthma equipment The barriers to medication use Asthma care plans Peak flow meter Triggers Asthma and school/day care Regular and Follow-up Appointments Importance of regular and followup appointments Different types of health care provider appointments How and when to schedule followup appointments How to identify and contact information for physicians How to get a primary health care provider How to communicate with health care providers Cultural Issues that Affect Asthma Care Cultural issues that can affect a child’s asthma care Helping families to address cultural differences with their care provider Folk remedies Language issues and communicating with your health care provider Being a Successful Parent Mentor General Parent Mentor skills Tips on being a good mentor Using Mock Apartment for Trigger Training Parent Mentor Responsibilities Support and act as a resource for families with asthmatic children Help families work with doctors for best care Provide education about child’s asthma Assist with talking to doctors, making appointments, finding insurance, and primary care doctor (if needed) Help create a healthier home environment Provide support and network in the community Manuals English Spanish Feedback OutcomesA Randomized Controlled Trial of the Effectiveness of Parent Mentors in Improving Asthma Outcomes in Minority Children Glenn Flores, Christina Snowden-Bridon, Sylvia Torres, Ruth Perez, Tim Walter, Jane Brotanek, Sandy Korman, Hua Lin Background Asthma disproportionately affects minorities only 3% of white children have active asthma, vs. 6% of African-American and 11% of Puerto Rican children Compared with white asthmatic children, African-American asthmatic children 3 times more likely to be hospitalized 5 times more likely to die But few studies have evaluated interventions to improve asthma outcomes in minority children No study has examined effectiveness of Parent Mentors Study Aim To determine whether Parent Mentors (PMs) more effective than traditional asthma care in improving minority children’s asthma outcomes Methods Randomized, controlled, single-blinded trial Staff assessing outcomes blinded to group allocation Participants randomized to Parent Mentor intervention (+ traditional asthma care) Control group: traditional asthma care Participants recruited from consecutive series of minority children 2-18 years old Eligibility criteria: Residing in Milwaukee Seen for asthma in 2004-2007 In 1 of 4 emergency departments (EDs) Or as primary reason for hospitalization at major children’s hospital Parent Mentor Intervention Intervention families paired with Parent Mentors (PMs), experienced minority parents of asthmatic children from same communities PMs received 2 1/2 days of training and a 73-page manual on Childhood asthma Assisting families with unmet needs for health insurance, housing, food, and other issues PMs met monthly with up to 10 asthmatic children and their families at community sites, phoned parents monthly, and made 2 home visits Outcomes 12 Outcomes assessed: Asthma Symptom and exacerbation frequency Missed school and parental work due to asthma Asthma ED visits and hospitalizations Parent and child quality of life (QOL) Pediatric Asthma Caregiver’s Quality of Life Questionnaire (PACQLQ) Pediatric Quality of Life Inventory Version 4.0 Generic Core Scales (PedsQL) Parental satisfaction with physician’s asthma care (Asthma Satisfaction Survey) Parent Asthma Management Self-Efficacy Scale (PAMSES) Costs and cost effectiveness Analyses Stratified analyses examined outcomes for high participants in intervention, and by disease severity (mild vs. Moderate/severe) High participants defined as those Attending at least 25% of monthly community meetings Completing at last 1/2 of monthly PM phone interactions General linear models used to examine time trends, and generalized estimated equations (GEEs) adjusted for multiple measurements per participant Recruitment Flow Chart Characteristics of Parents (N=220)* Characteristics of Study Children (N=220)* Changes in Asthma Symptom Outcomes: Baseline to Endpoint Changes in Non-Symptom Outcomes: Baseline to Endpoint Changes in Symptom Outcomes: Baseline to Endpoint Mean Number of Exacerbations First Month vs. Final Mean Number of Missed School Days: First Month vs. Final Month Mean Number of Missed Work Days: First Month vs. Final Month Change in PedsQL Score: First Month to Final Month Mean Number of Asthma ED Visits: First Month to Final Month Change in Pediatric Asthma Caregiver’s QOL Scores (PACQLQ): First Month to Final Month Changes in Parental Self-Efficacy (PAMSES) Score: First Month to Final Month Mean Number of Asthma Exacerbations by Follow-Up Month Other Outcomes No Significant Intergroup Differences in Hospitalization rates Asthma Satisfaction Survey Scores Cost Analysis Cost Effectiveness Analysis: Savings and Incremental Cost-Effectiveness Ratio Publications 2009 Journal of Asthma Article 2009 Pediatrics Article Conclusions Parent Mentors more effective than traditional asthma care in improving several asthma outcomes in minority children Reducing wheezing, asthma exacerbations, and ED visits Fewer missed days of parental work Improved parental self-efficacy in knowing when a serious breathing problem can be controlled at home Cost of intervention reasonable, averaging $60 per child per month Intervention results net cost savings Parent Mentors especially effective with high participants in intervention Implications Parent Mentors a promising and cost-effective means for reducing racial/ethnic disparities in asthma and other chronic diseases Additional intervention benefits include Community participation in asthma care Enhanced social support and cultural sensitivity Relatively low cost Parent Mentor employment in often economically-deprived communities
