Maryland State Sickle Cell Disease Follow Up Program SCDAA 43 rd Annual Convention September 23-26, 2015

Size: px

Start display at page:

Download "Maryland State Sickle Cell Disease Follow Up Program SCDAA 43 rd Annual Convention September 23-26, 2015"

Neil Simmons
8 years ago
Views:

1 Maryland State Sickle Cell Disease Follow Up Program SCDAA 43 rd Annual Convention September 23-26, 2015 Ms. Donna X. Harris Director Ms. Monika Piccardi RN, BSN Program Chief, Birth Conditions Long Term Follow Up Office of Genetics and People with Special Health Care Needs Maryland Department of Health and Mental Hygiene

2 MISSION AND VISION MISSION The mission of the is to protect, promote and improve the health and well-being of all Marylanders and their families through provision of public health leadership and through community-based public health efforts in partnership with local health departments, providers, community based organizations, and public and private sector agencies, giving special attention to at-risk and vulnerable populations. VISION The envisions a future in which all Marylanders and their families enjoy optimal health and wellbeing. 2

3 Sickle Cell Disease Program (SCDP) Long Term Follow Up Sickle Cell Anemia (Health General, Article 18, section 5) Establishes a program for screening newborns for sickle cell anemia, monitoring each affected infant s health and providing parental education regarding sickle cell anemia. OGPSHCN follows up on children identified with sickle cell disease to educate families and providers about needed preventive care. 3

4 In 2013, the State of Maryland Sickle Cell Follow up Program modified its program and database to allow for follow up of children and young adults through age 18. 4

5 In the 2 years since this programmatic change; one concern has been how to be able to connect to families through this decades long time frame once the annual primary care reporting period is complete? While the families will be contacted on a scheduled intermittent basis over the 18 years, an additional method was needed to keep families engaged with the follow up program and provide them with support. In looking at other programs, such as MDEDHI and CNMC s family mentor program, the use of a mentor seemed to help family engagement. 5

6 After follow up calls with moms of newborns, newly diagnosed with sickle cell over the past year, many had expressed an interest in having a parent mentor. 6

7 Initiating a Parent Mentor Program WHERE TO BEGIN?

8 Internet Search 8

9 INITIATING A PARENT MENTOR PROGRAM FOR SICKLE CELL DISEASE What was already being done? - What was the process - What forms were being used - What training did parent mentors receive - How were mentors being chosen - Lessons learned 9

10 INITIATING A PARENT MENTOR PROGRAM FOR SICKLE CELL DISEASE Common Themes -Enthusiastic, dedicated individuals Often given stipend or payment -Understand program, disease, or system -Trained per mentoring standards -System of documentation and follow up -Goal is to be self sustaining 10

11 INITIATING A PARENT MENTOR PROGRAM FOR SICKLE CELL DISEASE Enthusiastic, dedicated individuals - Recruited 2 parent volunteers for pilot program - Individuals that had expressed interest in working with the program previously - Raising children with sickle cell and/or have sickle cell themselves - Willing to work without compensation 11

12 INITIATING A PARENT MENTOR PROGRAM FOR SICKLE CELL DISEASE Understand program, disease or system - The parent mentors were given training in regards to the Sickle Cell Disease Long Term Follow Up program - Program history - Mission and goals - Current program specifics - Resources 12

13 Initiating a Parent Mentor Program For Sickle Cell Disease Trained per mentoring standards - Contacted EDHI parent mentor program and past sickle cell mentor for training advice - EDHI parent mentor trainer offered to modify their training program for our use. 13

14 Initiating a Parent Mentor Program for Sickle Cell Disease System of documentation and follow up - referral - call log - follow up documentation - confidentiality agreement - consent forms 14

15 Initiating a Parent Mentor Program for Sickle Cell Disease Implementation/Testing Requirements Design Evaluation/Evolution Implementation Testing/Pilot 15

16 Initiating a Parent Mentor Program for Sickle Cell Disease Brought volunteer parent mentors in house for training 16

17 Initiating a Parent Mentor Program for Sickle Cell Disease What is our expectation from a Parent Mentor? 17

18 Initiating a Parent Mentor Program for Sickle Cell Disease The general purpose is to provide support and skilled parental advice to families of children, teens and young adults with sickle cell disease. The mentor will provide not only mentoring, but role modeling; support and connection to the state sickle cell follow up program, community resources and encourage appropriate medical follow up. The mentor is not expected to take the role of a parent, social worker, psychologist or medical personnel but offer direction to appropriate persons and resources. 18

19 Initiating a Parent Mentor Program for Sickle Cell Disease Training from an official parent mentor trainer. -Cheri Dowling, Maryland Parent Connections 19

20 Initiating a Parent Mentor Program for Sickle Cell Disease Each parent received a program manual with details regarding: - State of Maryland Sickle Cell Disease Follow up Program - Website - Documents and educational materials sent to providers and parents/teens/young adults - State/community recourses - Parent Mentor Program details and expectations - Log Sheets for documenting calls - Confidentiality Agreement 20

21 Initiating a Parent Mentor Program for Sickle Cell Disease - Initial Pilot program ran from June-August All NBS referral parents and those parents referred for parental education, by the child s physician, were offered a parent mentor. - Referrals were assigned to a parent mentor on an alternating basis with regards to the needs of the parent requesting a mentor - Cultural needs - Contact times - Level of need (new parent, general information, medical needs) - All requests and assigned mentor documented in database. 21

22 Initiating a Parent Mentor Program for Sickle Cell Disease - 14 parents offered a parent mentor - 12 parents agreed to be contacted by a parent mentor (85%) - Each parent mentor received 6 referrals - 100% parents wishing to participate in the program were contacted. - Approximately 50% of the parents requested a call back at another time, due to being unable to talk at the time of the call. - 50% of the parents, after speaking with the parent mentor, requested further contact. 22

23 Initiating a Parent Mentor Program for Sickle Cell Disease Evaluation of Pilot program 23

24 Initiating a Parent Mentor Program for Sickle Cell Disease It takes time - multiple contact attempts - establish relationship - follow up - documentation 24

25 Initiating a Parent Mentor Program for Sickle Cell Disease What now? -Continue mentoring program -Seek funding and resources to support parent mentors -Compensation for travel, phone calls, gatherings -Seek out additional mentors as need grows -Men -Teens -Young adults -Periodic evaluation 25

26 Initiating a Parent Mentor Program for Sickle Cell Disease 26

27 Sickle Cell Disease Follow up Program Program Chief, Birth Conditions and Long Term Follow Up Monika Piccardi RN BSN 201 W. Preston St. Room 423 Baltimore, MD Follow us on our Facebook page MDHMH Office of Genetics and People with Special Health Care Needs 27

28 PREVENTION AND HEALTH PROMOTION ADMINISTRATION 28

Maryland State Sickle Cell Disease Follow Up Program SCDAA 41 st Annual Convention September 27, 2013

Maryland State Sickle Cell Disease Follow Up Program SCDAA 41 st Annual Convention September 27, 2013 Ms. Donna X. Harris Director Dr. Deborah Badawi, MD Medical Director Ms. Monika Piccardi RN, BSN Program