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The purpose of this study is to test a new support group curriculum that we designed to support parents of children with Developmental Language Disorder (DLD).
After completing the informed consent process and eligibility has been verified, participants will complete parenting questionnaires. They will then be asked to attend 8-10 weekly support group meetings with other participants. Support group meetings are held remotely. After each meeting, participants will be asked to complete a brief questionnaire to learn about their experiences. After the final support group meeting, participants will be asked to complete the same parenting questionnaires as at study initiation. Participants will also be asked to complete a focus group with other support group attendees to share about their experiences in the group.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Developmental Pilot for Support Groups | Experimental | Participants will join a teletherapy delivered support group for caregivers of children with DLD. They will attend 8-10 weekly support group meetings and provide feedback on the meeting content and format so that we can revise the materials and evaluate early efficacy prior to a larger in person pilot. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Support Groups | Behavioral | A manualized support group for families who care for a child with developmental language disorder (DLD) |
|
| Measure | Description | Time Frame |
|---|---|---|
| Qualitative interviews with participants | Focus group and/or one-on-one interviews with support group participants | up to 2 weeks after intervention |
| Measure | Description | Time Frame |
|---|---|---|
| Survey on Knowledge Seeking Behaviors | We will use a survey developed by Darefsky (2022, adapted from (Al-Daihani & Al-Ateeqi, 2015). The survey consists of 9 total questions, of which there are two yes/no items, two multiple choice items, and four Likert scale items. This measure is not scored in a way that results in minimum or maximum scores, or outcomes. This measure is used to collect descriptive information about types and sources of information that caregivers desire in relation to their child's diagnosis. |
| Measure | Description | Time Frame |
|---|---|---|
| Weekly Support Group Attendance | We track individual attendance at each support group meeting. Minimum score is 1 and maximum score is 8. The maximum score indicates full participation in all meetings. | throughout intervention, up to 8 weeks. |
Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Amanda Van Horne, PhD | University of Delaware | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Delaware | Newark | Delaware | 19713 | United States |
The ICPSR (Inter-university Consortium for Political and Social Research) data repositories and data management standards apply here. In all cases, we offer participants the chance to opt out of data sharing. The following applies to those who agree to data sharing. For focus groups and participant interviews which cannot be fully de-identified, we will share redacted transcripts with individuals with an IRB with access managed by ICPSR. For pre/post measures and daily surveys of participation, we will share de-identified data sets.
Deidentified IPD data will be shared 1 year after the study is completed or when the grant ends, which ever is first and will be available in perpetuity on clinical trials.gov. Focus group and structured interviews will be deposited in ICPSR at that time.
To access data from ICPSR, users must present an approved IRB that justifies access consistent with participant's initial consent process and honors participant privacy and confidentiality.
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| ID | Term |
|---|---|
| D007805 | Language Development Disorders |
| ID | Term |
|---|---|
| D007806 | Language Disorders |
| D003147 | Communication Disorders |
| D019954 | Neurobehavioral Manifestations |
| D009461 | Neurologic Manifestations |
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| ID | Term |
|---|---|
| D012657 | Self-Help Groups |
| ID | Term |
|---|---|
| D009938 | Organizations |
| D004472 | Health Care Economics and Organizations |
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| up to 4 weeks before and 2 weeks after intervention |
| Child Adjustment and Parent Efficacy Scale | The Child Adjustment and Parent Efficacy Scale (CAPES; Morawska & Sanders, 2010) includes 50 Likert scale items This yields two measurements: one for Child Emotional and Behavioral Problems and one for Parent Efficacy. Child Emotional and Behavioral Problems: Minimum score = 0; Maximum score = 81. Higher scores indicate greater levels of child problems. Parent Efficacy: Minimum score = 19; Maximum score = 190 Higher scores indicate greater levels of parent self-efficacy. | up to 4 weeks before and 2 weeks after intervention |
| Parenting Stress Index, Fourth Edition Short Form | The Parenting Stress Index, Fourth Edition Short Form (PSI-4-SF; Abidin, 2012)includes 36 items. Minimum score = 36; Maximum score = 180. Higher scores indicate higher parent stress levels. | up to 4 weeks before and 2 weeks after intervention |
| Family Support Scale | The Family Support Scale (FSS; Dunst, et al., 1984)includes 18 Likert scale items. Minimum score = 0 Maximum score = 95 Higher scores indicate more family support. | up to 4 weeks before and 2 weeks after intervention |
| D009422 | Nervous System Diseases |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |