BENEFITS OF PEER SUPPORT GROUPS IN THE SPINA BIFIDA/ NGB POPULATION Emily Haddad LCSW, Clinical Social Worker Department of Urology, OU Medical Center

Medical social work contributes to the team with the mission of enhancing the quality of life for patients, supporting their interactions with the healthcare system, and advocating for the patient and family’s self- competence and efficacy.

EDUCATIONAL HISTORY AND TRAINING University of Michigan, Masters in Social Work  Toledo Children’s Hospital, NICU  The Hospital for Sick Children, Toronto Ontario, Pediatric Urology, Multidisciplinary Urogenital Clinic (MUG)  Graduate Student Instructor, Dept. of Sociology, “Introduction to Sociology: Sex, Gender Sport” University of Vermont, BA in Anthropology and Sociology  World Learning Institute, Amsterdam the Netherlands, Gender Identity and Sexuality Program  Teacher’s Assistant, Department of Sociology, “Introduction to Sociology” and “Race Relations”

THE ROLE OF PEER SUPPORT GROUPS  Do support groups and behavioral health interventions positively impact compliance and overall health outcomes?  Do support groups reduce risks for isolation, depression, and anxiety for children and adolescents with chronic illness?  Can interventions aimed at improving overall quality of life be implemented in an outpatient specialty clinic?

Clinic/Inpatient Social relationships Family Therapy Adaptive sports Peer Support Group Academic performance Individualized Education Plan Behavioral intervention Primary mental health concerns Individuals therapy Referral to community supports Peer Support Group

PEER SUPPORT GROUP PEDIATRIC UROLOGY  Females age 6-18  30 Families invited, 17 families have attended  Open group, no end date  Diagnosis of NGB: Spina Bifida, Bladder Exstrophy, Cloacal Anomaly, Non-Neurogenic NGB, CKD  1x/month after school hours (August present)  Food provided  Parent and Patient sessions  Medical social worker facilitated

PEER SUPPORT GROUP STUDY EXPECTED  Shared Experiences  Shame/embarrassment about incontinence  Isolation, secrecy  Compliance challenges  Body image  Relationship skills  Difficulty with communicating experience to peers and family  Improved self value after intervention UNEXPECTED  Resource sharing: parents  Family dynamics changes  Level of parental guilt and negativity  Time frame shift in attitude of patients  Education: diagnosis, basic anatomy, prognosis  Improvement in compliance and independence  Shame and embarrassment about treatment

Peer Support Self valuePositive relationships Education Fully informed decisions Self efficacy and empowerment Patient/Provider Relationship TrustIndependence

SELF VALUE “She loves the support group and I can tell a big difference in her outlook concerning her bladder issues. She has also informed me that she plans to become a pediatric urologist.”

PATIENT- PROVIDER RELATIONSHIP “I really love my doctor and nurse and know they care a lot about me, but I am uncomfortable with the exams and urodynamics now because I’m older and they are men. I don’t want them to be upset with me or have their feelings hurt.”

SUPPORT GROUP ACTIVITIES

HOW HAVE YOUR MEDICAL NEEDS AFFECTED YOUR CHARACTER?  “I have compassion for others with differences that I may not have had”  “I am good at finding the fun in things because I know how things can be really hard at times”  “ I had to grow up faster because of all the extra medical things I needed to do for myself and go through, so I think I’m more mature than many of my classmates”  “This group. I am excited to come every month and report to the younger kids that I’m taking care of myself. Maybe they can learn from my mistakes”

PEER SUPPORT GROUP OUTREACH

OTHER LOCAL PROGRAMS FOR PATIENTS

QUESTIONS AND COMMENTS? EMILY HADDAD LCSW