Engaging Siblings of Adults With Autism in Future Planning
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT03374072|
Recruitment Status : Recruiting
First Posted : December 15, 2017
Last Update Posted : May 18, 2020
|Condition or disease||Intervention/treatment||Phase|
|Autistic Disorder||Behavioral: Siblings FORWARD program Behavioral: Information Only Condition||Not Applicable|
|Study Type :||Interventional (Clinical Trial)|
|Estimated Enrollment :||36 participants|
|Intervention Model:||Parallel Assignment|
|Masking:||Single (Outcomes Assessor)|
|Official Title:||Engaging Siblings of Adults With Autism in Future Planning|
|Actual Study Start Date :||February 1, 2017|
|Estimated Primary Completion Date :||January 31, 2021|
|Estimated Study Completion Date :||January 31, 2021|
Experimental: Siblings FORWARD
Siblings who participate in the Siblings FORWARD program will participate in videoteleconference sessions with an Arc community provider. The content and format of the program is still being finalized. In the initial conception of the program, we proposed 6 sessions: Session 1 will focus on assessment and motivation (Sibling and adult with ASD). In Session 2, the sibling will learn family communication strategies. Session 3 will provide the sibling with information about adult services and how to navigate the service system. Session 5 will be a joint session with the family members with ASD. In the final session, the sibling will develop a plan of action outlining their involvement in family future planning.
Behavioral: Siblings FORWARD program
Siblings will participate in a program developed by the researchers designed to engage adult siblings with their brother or sister with ASD and other family members to plan for the future. The Siblings FORWARD program will be implemented by community service providers already working with adults with ASD. The program will involve a series individual and joint sessions with siblings and adults with ASD using videoteleconferencing software.
Active Comparator: Information Only Condition
We will create an information packet for siblings in the control condition. Siblings in the control condition will receive the same tip sheets and packet of information about resources for adults with ASD as those distributed in Session 3 of the Siblings FORWARD program.
Behavioral: Information Only Condition
Siblings will be provided with written information about services for adults with ASD and future planning.
- Change in Quality of Sibling Plan of Action [ Time Frame: baseline and 4 months ]Investigator developed. Siblings from both conditions will submit a written plan of action at pre- and post-intervention. The investigators will use a template on which siblings will detail their short- and long-term goals with respect to planning for the future with their brother or sister with ASD, and their concrete next steps. Blind assessors will rate the quality of each plan according specific criteria that capture the appropriateness and specificity of the plan.
- Sibling Future Planning Actions [ Time Frame: baseline, 4 months, 7 months ]Investigator developed. Siblings from both conditions will complete a structured interview in which they report on any actions taken with regard to planning for the future with their families. Questions will assess preparation (e.g., family communication), goal-setting, information-gathering, interfacing with relevant service providers (e.g., consulting with a special needs lawyer, touring a residential facility, etc.), and implementation of plan.
- Social Problem-Solving Skills Inventory-Revised [ Time Frame: baseline, 4 months, 7 months ]Developed by D'Zurilla, Nezu, & Maydeu-Olivares (1997). Siblings will rate 52 items that assess five dimensions on how they strategically approach a situation (positive problem orientation, negative problem orientation, rational problem solving, impulsivity carelessness style, and avoidance style). Siblings will rate the extent to which each item is 1 (not at all true) to 5 (extremely true) of them. Higher scores indicate better problem-solving skills.
- Family Communication about Future Planning [ Time Frame: baseline, 4 months, 7 months ]Adapted from a measure used by Heller and Caldwell (2006). Siblings will rate the frequency with which they have had family discussions about planning for the future of their brother/sister with ASD. Siblings will respond to a 1-item measure scored on a 3-point scale (not discussed at all, discussed somewhat, discussed a great deal).
- Future Planning Self-Efficacy [ Time Frame: baseline, 4 months, 7 months ]Adapted version of the Caregiver Self-Efficacy Scale used by Heller and Caldwell (2006). Siblings will complete 6 items rated on a 4-point scale (strongly disagree to strong agree).
- Sibling Barriers to Future Planning [ Time Frame: baseline, 4 months, 7 months ]Adapted from a measure used by Heller and Caldwell (2006). Siblings will complete a list of barriers to future planning that includes barriers such as: difficulty finding helpful contact persons within the service system, emotional barriers involved with thinking their parents' mortality, or disagreement with a relative with a disability about the future.
- Sibling Knowledge of Adult Services [ Time Frame: baseline, 4 months, 7 months ]Adapted from a measure used by Taylor and Seltzer (2011). Siblings will rate their knowledge of the services received or needed by their brother/sister with ASD. The investigators will use a list of 12 adult services: physical therapy, occupational therapy, speech and language therapy, psychological or psychiatric services, crisis/intervention services, personal care assistance, agency sponsored recreational or social activities, transportation services, income support, vocational services, respite services, and Medicaid. Siblings will rate whether or not their brother/sister currently receives the services, or if they do not know. If they know that their brother/sister is not receiving a service, they will indicate whether or not that service is needed.
- Sibling Knowledge of Family Future Plan [ Time Frame: baseline, 4 months, 7 months ]Investigator developed. Siblings will complete a checklist of their knowledge (yes/no/ don't know) of whether their family has established: (1) a will, (2) a special needs trust, (3), a financial plan; (4) a letter of intent; (5) a long-term residential plan; or (6) determination of future guardianship.
- Life Experiences Checklist [ Time Frame: baseline, 4 months, 7 months ]Developed by Ager (1993). Siblings will rate their brother/sister's quality of life using the Life Experiences Checklist. Five sections cover the individual's home environment, leisure activities, relationships, freedom, and opportunities.
- World Health Organization Quality of Life - Brief Version [ Time Frame: baseline, 4 months, 7 months ]Developed by Skevington, Lotfy and O'Connell (2004). Adults with ASD will complete the WHOQOL-BREF, a shorter version of World Health Organization Quality of Life assessment, the WHOQOL-100. The WHOQOL-BREF includes 26 items rated on a 5-point scale (1=not at all/very poor/very dissatisfied to 5 = completely/very good/very satisfied) addressing physical and psychological health, social relationships, and environment. Items will be summed to create a total raw score ranging from 26 to 130 with higher scores representing better quality of life.
- Adult with ASD Unmet Needs. [ Time Frame: baseline, 3 months, 7 months ]Developed by Nicolaidis et al. (2013). Adults with ASD will report on their perceptions of unmet needs in medical care, mental healthcare or counseling, preventive services, emergency department visits, outpatient visits, and hospitalizations
- Social and Emotional Loneliness Scale - Family subscale [ Time Frame: baseline, 3 months, 7 months ]Developed by DiTommaso and Spinner (1993). Adults with ASD will complete the 11-item Family subscale, which assesses feelings of loneliness within the family (e.g., lack of family support). Each item is rated on a 7-point scale from 1 'strongly disagree' to 7 'strongly agree.' Items will be summed to create a total raw score ranging from 11 to 77 with higher scores representing more loneliness in the family.
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03374072
|Contact: Gael Orsmond, PhD||(617) email@example.com|
|Contact: Kristin Long, PhD||(617) firstname.lastname@example.org|
|Principal Investigator:||Gael Orsmond, PhD||Boston University|