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The purpose of this proposal is to implement a joint project with Georgia Southern University and the Effingham County Navigator Team to improve the quality of life of families with a child with a disability in southeast Georgia. The final outcome of this project will be a new curriculum, Living Well Together, which builds on a previous implementation of the Living Well with a Disability curriculum in Bulloch County.
First, parent facilitators will be recruited and matched with their peers. Parent facilitators will be members of the Effingham County Navigator Team with a child with a disability. The peer matching resembles the community lay health worker model. The community lay health worker model will reduce the amount of time needed to meet face to face with families. To begin adapting the facilitator training and curriculum, the program directors will work with representatives from the University of Montana Rural Institute on Disabilities to review and update training materials. A representative from the Rural Institute on Disabilities will deliver an online intensive facilitator training. The facilitator training is approximately 15 hours long. The training includes three major components: peer training, facilitator training, and Master "Train the Trainer" training. The project directors will work with the Effingham County Navigator Team to recruit parents. The Navigator Team will recruit five parents as parent facilitators. The parents will work together with the project directors to deliver the adapted curriculum to participating families. With bi-weekly meetings for 10 weeks between parent facilitators and family participants in the home or another desired location. The project directors have already participated in the facilitator training and will serve as mentors to newly trained facilitators. At the end of the online training session, the parent facilitators will be equipped to successfully implement the Living Well curriculum. The project directors will schedule a working meeting before and after the facilitator training to discuss curriculum changes with the Rural Institute on Disabilities representative. Changes in readability are anticipated since the target audience includes adolescents. Curriculum delivery methods will need tailoring to match a family-based approach including activities to be completed at the home at the family and individual levels for parents, siblings, and children. Both GSU faculty and the Navigator team will lead monthly summary meetings to review the adapted content. These meetings will take place at a convenient location in the community as determined by the Navigator team. Pre and post focus groups will take place before and after these monthly meetings at a convenient locale in the community.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Living Well with a Disability | Experimental | The parents will work together with the project directors to deliver the adapted curriculum to participating families. With bi-weekly meetings for 10 weeks between parent facilitators and family participants in the home or another desired location. The project directors have already participated in the facilitator training and will serve as mentors to newly trained facilitators. At the end of the online training session, the parent facilitators will be equipped to successfully implement the Living Well curriculum. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Living Well with a Disability | Behavioral | Implementation of an adapted health promotion program. |
|
| Measure | Description | Time Frame |
|---|---|---|
| Global Health | Patient Reported Outcomes Measurement Information System Parent Proxy scale v 1.0 Global Health
| 12 months |
| Measure | Description | Time Frame |
|---|---|---|
| Family Relationships | Patient Reported Outcomes Measurement Information System Parent Proxy scale v. 1.0 Family Relationships
|
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Inclusion Criteria
Families of with a child (3-50) with any developmental disability
Exclusion Criteria
Family and child are unable to follow directions and participate in curriculum activities.
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| Name | Affiliation | Role |
|---|---|---|
| Gavin Colquitt, EdD | Georgia Southern University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| B and B Care Services | Springfield | Georgia | 31329 | United States |
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| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| Prot_SAP | Yes | Yes | No | Study Protocol and Statistical Analysis Plan | Feb 13, 2018 | Feb 23, 2018 | Prot_SAP_000.pdf |
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| ID | Term |
|---|---|
| D006266 | Health Education |
| D002658 | Developmental Disabilities |
| ID | Term |
|---|---|
| D000099060 | Adherence Interventions |
| D055118 | Medication Adherence |
| D010349 | Patient Compliance |
| D010342 | Patient Acceptance of Health Care |
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| 12 months |
| Life Satisfaction | Patient Reported Outcomes Measurement Information System Parent Proxy scale v 1.0 Life Satisfaction
| 12 months |
| Physical Activity | Patient Reported Outcomes Measurement Information System Parent Proxy scale v 1.0 Physical Activity
| 12 months |
| Psychological Stress Experiences | Patient Reported Outcomes Measurement Information System Parent Proxy scale v 1.0 Psychological Stress Experiences | 12 months |
| Peer Relationships | Patient Reported Outcomes Measurement Information System Parent Proxy scale v 1.0 Peer Relationships
| 12 months |
| D000074822 | Treatment Adherence and Compliance |
| D015438 | Health Behavior |
| D001519 | Behavior |
| D065886 | Neurodevelopmental Disorders |
| D001523 | Mental Disorders |