Engaging Siblings of Adults With Autism in Future Planning
Study Details
Study Description
Brief Summary
The proposed project is an intervention development grant in which the investigators will develop a program to facilitate the engagement of adult siblings to work with their families to plan for the future of their brother or sister with autism spectrum disorder (ASD). Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) will target common barriers to sibling involvement in family future planning, including improving family communication around difficult topics, increasing siblings' knowledge of and confidence in accessing ASD service systems, and anticipating and proactively problem-solving barriers to future planning. Siblings FORWARD will be implemented in a community setting. There are three aims of the project, and only the third aim will utilize a clinical trial. Aim 1: To develop the Siblings FORWARD program. The investigators will develop the Siblings FORWARD program in collaboration with community organizations, with input from siblings, adults with ASD, and community providers. Aim 2: To assess feasibility of the Siblings FORWARD program. The investigators will assess recruitment capability, appropriateness of outcome measures, acceptability of the program, and viability of the procedures and further refine the Siblings FORWARD Program through an open trial with 5 siblings. Aim 3: To assess the outcomes of participation in the Siblings FORWARD program. The investigators will conduct a pilot randomized controlled trial (RCT) with 36 siblings. The investigators will collect pre-, post-, and 3-month follow up data measuring intervention targets (problem-solving skills, communication skills, self-efficacy, perceived barriers to future planning, knowledge of services & delivery systems, knowledge of family plans), sibling behavioral outcomes (development & implementation of a sibling future plan of action, increased family communication around future planning), and proximal outcomes for the adult with ASD (unmet needs, quality of life, and family relationships). Siblings will be randomly assigned to the Siblings FORWARD (N=18) or an information only control condition (N=18). The investigators hypothesize that siblings who participate in the Siblings FORWARD program will have a more developed plan of action, gains in skills and knowledge, and improved proximal outcomes for the adult with ASD, compared to siblings in the control condition.
| Condition or Disease | Intervention/Treatment | Phase |
|---|---|---|
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N/A |
Study Design
Arms and Interventions
| Arm | Intervention/Treatment |
|---|---|
| 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.
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| 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.
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Outcome Measures
Primary Outcome Measures
- Change in Quality of Sibling Plan of Action [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.
Secondary Outcome Measures
- Sibling Future Planning Actions [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 [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 [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 [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 [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 [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 [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.
Other Outcome Measures
- Life Experiences Checklist [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 [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. [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 [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.
Eligibility Criteria
Criteria
Inclusion Criteria:
Siblings of adults with autism spectrum disorder (ASD):
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Have one or more adult brother(s) or sister(s) with ASD who are either biologically related and/or were raised in the same family of origin (e.g., adopted, step, or foster siblings)
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Age 18+.
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English or Spanish fluency.
Adults with ASD:
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Have an ASD diagnosis.
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Have an adult brother/sister (i.e., a sibling).
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Age 21+.
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English or Spanish fluency if verbal.
Exclusion Criteria:
Siblings of adults with autism spectrum disorder (ASD):
-Siblings will be excluded if they have an ASD diagnosis themselves or if they have any disability that would interfere with their ability to engage meaningfully in future planning for the adult with ASD.
Adults with ASD:
-None
Contacts and Locations
Locations
| Site | City | State | Country | Postal Code | |
|---|---|---|---|---|---|
| 1 | Boston University | Boston | Massachusetts | United States | 02215 |
Sponsors and Collaborators
- Boston University Charles River Campus
- National Institute of Mental Health (NIMH)
Investigators
- Principal Investigator: Gael Orsmond, PhD, Boston University
Study Documents (Full-Text)
None provided.More Information
Publications
None provided.- 4366E
- R34MH111489