A randomized controlled trial will be conducted to determine the effects of an adapted family-centered autism transition intervention called Transitioning Together/Juntos en la Transición on meaningful outcomes for families. The study will occur in a safety net hospital setting. The adapted version of this multi-family group psychoeducation intervention is delivered across one individual family joining session and four 2.5 hour multi-family group sessions. The parent and youth groups are held in separately, at the same time.
Objective 1: The investigators will test the efficacy of the adapted version of Transitioning Together on youth quality of life and progress toward individual transition goals. 128 English and/or Spanish speaking families of youth ages 14-21 years will be enrolled in the study. The primary enrollment site is Boston Medical Center (BMC), an urban safety net hospital where patients predominantly (\>75%) from low-income households are served. The effects of Transitioning Together will be compared to a usual care control condition with a referral to the Transition Specialist within BMC's Developmental and Behavioral Pediatrics clinic. Youth quality of life and progress toward individual transition goals will be compared from baseline and three-to-six months following randomization. The investigators hypothesize that Transitioning Together will have a significant positive effect on youth quality of life and goal attainment across the two time points. Objective 2: Additional standardized assessments will be administered to the 128 parents and the 128 autistic youth, to examine the effects of Transitioning Together compared to the control condition on: the broader family unit's well-being, empowerment, coping skills, social support, transition readiness, and family climate. The investigators will explore whether these factors act to mediate or moderate primary or secondary study outcomes (youth quality of life and progress toward individual transition goals). These putative mediators and moderators will be assessed at the baseline and 3-to 6-months following randomization.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
TREATMENT
Masking
NONE
Enrollment
48
1. One individual family joining session when each family dyad meets with group therapists to establish rapport and share their own unique family's background, goals, and supports. 2. A series of four 2.5-hour multi-family group psychoeducation intervention sessions focused on problem-solving education and psychoeducational autism transition-to-adulthood content which can include independence in adulthood, community involvement, guardianship and legal issues, employment and education, health and well-being.
An expedited referral will be made for participants to establish care with a BMC Autism Program Transition/Resource Specialist. Data will be abstracted from the electronic medical record on how many visits each family completes with a BMC Autism Program Transition/Resource Specialist or other BMC Developmental and Behavioral Pediatrics provider throughout the study period.
Boston Medical Center
Boston, Massachusetts, United States
Change in quality of life of autistic youth
The Global Health, Emotional Distress, Subjective Well-Being, and Relationships sub scales of the NIH Patient-Reported Outcomes Measurement Information Systems (PROMIS) will be administered via parent proxy (and youth self-report when appropriate) to asses the quality of life for autistic youth. Item scores can range from 1 to 5 and higher scores are associated with a higher quality of life.
Time frame: Baseline, 3-12 months
Change in transition-related goal attainment
The Goal Attainment Scaling will be administered to asses transition-related goal attainment. It is a valid and reliable technique to benchmark success in meeting individualized goals. Scores can range from 0 to 4 and higher scores are associated with better goal attainment.
Time frame: Baseline, 3-12 months
Change in youth problem behaviors
The Scales of Independent Behavior-Revised Problem Behavior Scale will be administered to assess frequency and severity of problem behaviors in youth. It is a parent-report questionnaire. For problem behaviors that occurred, items scores can range from 1 to 5 for frequency and severity, with a higher score associated with higher frequency and higher severity of the problem behavior.
Time frame: Baseline, 3-12 months
Change in family empowerment
The Family Empowerment Scale will be administered to asses family empowerment. It is a self-report scale that measures empowerment in families with children who have emotional or behavioral disorders and has robust psychometric properties. Item scores can range from 1 to 5 and higher scores are associated with more family empowerment.
Time frame: Baseline, 3-12 months
Change in coping
The Brief Coping Orientation to Problems Experienced Inventory (COPE) will be administered to asses family coping skills. It is a self-report questionnaire that measures adaptive and maladaptive coping responses to adversity, validated in health-care settings. Item scores can range from 1 to 4 and higher/lower subscale scores are associated with a higher level of the coping style measured in that subscale.
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Time frame: Baseline, 3-12 months
Change in social support
The Medical Outcomes Study (MOS) Social Support Survey will be administered to asses social support. It is a self-report questionnaire that measures the availability of other people to provide social support through emotional, informational, tangible, affectionate, and social dimensions. Item scores can range from 1 to 5 and higher scores are associated with more social support.
Time frame: Baseline, 3-12 months
Change in perceived burden
The Zarit Burden Interview will be administered to asses perceived burden related to taking care of another person. It is a self-report questionnaire. Item scores can range from 0 to 4 and higher scores are associated with more perceived burden.
Time frame: Baseline, 3-12 months
Change in parental well-being
The Generalized Anxiety Screener and the Patient Health Questionnaire will be administered to asses parental well-being - specifically anxiety and depression symptoms. Both measures are self-report questionnaires. It is a self-report questionnaire. On the both measures, item scores range from 0 to 3 and higher scores are associated with higher severity of symptoms.
Time frame: Baseline, 3-12 months
Change in family climate
The Five-Minute Speech Sample and the Happy Proud Scale will be administered to asses family climate. The Five Minute Speech Sample is a 5-minute sample of a caregiver speaking about their relationship with their child that is scored to measure caregivers' expressed emotion regarding a relative with a mental health condition. The Happy Proud Scale measures parent and youth feelings of pride and happiness with regard to the things the youth does. Item scores range from 0 to 4 with higher scores associated with higher feelings of pride and happiness.
Time frame: Baseline, 3-12 months
Change in transition readiness
The Transition Readiness Scale will be used to assess youth readiness for the transition to adulthood. It is a parent proxy and youth self-report questionnaire. Item scores range from 1 to 4. Higher scores are associated with higher transition readiness. Additionally, the Waisman Activities of Daily Living Scale will be used to assess the level of independent aspect of transition readiness. It is a parent proxy report questionnaire. Item scores range from 0 to 2. Higher scores are associated with higher independence in performing tasks on one's own.
Time frame: Baseline, 3-12 months