P SYCHOSOCIAL I SSUES IN C YSTIC F IBROSIS A DHERENCE AND Q UALITY OF L IFE Yvonne D. Gathers, MSW,LCSW Clinical Social Worker Pediatric Pulmonary Center

O BJECTIVES Psychosocial Issues in children, adolescents and adults with Cystic Fibrosis Psychological complications of cystic fibrosis Obstacles of Transition to adult Care Obstacles for parents/Caregivers View video tape of adolescents with cystic fibrosis

I NTRODUCTION Children (age birth-10 yrs.) Early adolescence (age range yrs.) Am I normal Mid-adolescence (age yrs.) Independence/self image Late adolescence (age 17-older yrs.) Future oriented, intimacy /career goals

Process of acquiring relevant information needed to decide on and develop a rational plan for helping clients or patients. CulturalValues Environment Health Beliefs Resources Education Economics Housing Support system Family

P SYCHOLOGICAL C OMPLICATIONS OF C YSTIC F IBROSIS Severity of Disease Shock, disbelief, fear, anger, depression & guilt Treatment Regiment Nutritional habits/Bonding time vs vest therapy Length of Hospitalizations/Outpatient Office Visits Employment/Marriage

P SYCHOLOGICAL C OMPLICATIONS Body image Mature 1 ½ - 2 yrs. later Younger and small body size Relationship with peers

O BSTACLES A FFECTING T RANSITION Dependent behavior Immaturity Severe illness or disability Mental Health Lack of support systems Lack of trust in caregivers Poor adherence to treatment regiment Parental involvement

O BSTACLES FOR P ARENTS /C AREGIVERS Excessive need for control Emotional dependency Parenting styles/overprotective Heightened perception of disease severity Lack of trust in caregivers Denial about the severity of the disease