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This study focuses on the caregiver's knowledge, comfort, and confidence in interacting with and supporting their infant with Cerebral Palsy (CP) or at high risk for Cerebral Palsy. Four caregivers with their infants will be in one cohort to assess the benefits of group intervention. The intervention is delivered in a group, bootcamp-style educational format led by clinical team including pediatric physiatrist, physical therapist and occupational therapist.
This program aims to provide caregivers with structured education and practical skills related to early intervention of cerebral palsy. Session content includes: (1) understanding the definition and nature of cerebral palsy; (2) the importance of early intervention and principles of infant neuroplasticity; and (3) foundational early motor strategies and CP-specific therapeutic principles commonly used in PT and OT. Sessions incorporate therapist demonstration, caregiver coaching, and guided motor play with the infant. In addition to knowledge-building, the intervention also aims to provide intentional caregiver support following the early diagnosis of CP, and achieves this via fostering peer support among families with similar experiences, and empowering caregivers in navigating and advocating within their child's early intervention system. Outcomes will be assessed through pre- and post-intervention parental Likert-scale surveys measuring (1) caregiver perceived knowledge, comfort, and confidence interacting with their infant, (2) perceived benefit of the group program, and (3) caregiver readiness to actively engage in ongoing longitudinal CP-specific early intervention.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Caregiver-Infant | Other |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Caregiver knowledge | Behavioral | This study focuses on the caregiver's knowledge, comfort, and confidence in interacting with and supporting their infant with Cerebral Palsy (CP) or at high risk for Cerebral Palsy. |
| Measure | Description | Time Frame |
|---|---|---|
| Caregiver knowledge, comfort, and confidence | Change from baseline in caregiver-perceived knowledge, comfort, and confidence in interacting with and supporting their infant with CP or high CP risk trhough integrated PT/OT caregiver-focused group intervention at 6 weeks. | Baseline to 6 weeks. |
| Measure | Description | Time Frame |
|---|---|---|
| Group intervention | Change from baseline in caregiver perceived benefit of the group intervention on Parental Survey at 6 weeks. | Baseline to 6 weeks. |
| Early Start | Change from baseline readiness and acceptance of Early Start home-based early intervention services at 6 weeks. |
| Measure | Description | Time Frame |
|---|---|---|
| Caregiver feedback | Change from baseline in peer support, barriers, and suggested program improvements on Parental Survey at 6 weeks. | Baseline to 6 weeks. |
Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Jasmine Ng, MD | Contact | 510-428-3655 | jasmine.ng@ucsf.edu |
| Name | Affiliation | Role |
|---|---|---|
| Jasmine Ng, MD | University of California San Frnacisco | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| UCSF Cerebral Palsy & Movement Disorders Center | Oakland | California | 94609 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 36615077 | Background | Karstad SB, Bjorseth A, Lindstedt J, Brenne AS, Steihaug H, Elvrum AG. Parental Coping, Representations, and Interactions with Their Infants at High Risk of Cerebral Palsy. J Clin Med. 2022 Dec 29;12(1):277. doi: 10.3390/jcm12010277. | |
| 34622968 | Background | Harniess PA, Gibbs D, Bezemer J, Purna Basu A. Parental engagement in early intervention for infants with cerebral palsy-A realist synthesis. Child Care Health Dev. 2022 May;48(3):359-377. doi: 10.1111/cch.12916. Epub 2021 Nov 1. |
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4 caregivers and their infant will be in one group. There will be a total of 4 groups.
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| Physical therapy | Behavioral | Demonstration and guided practice, caregiver-infant hands-on interaction practice, home exercise program, and support for strengthening parent-infant interaction on Cerebral Palsy basics. |
|
| Occupational Therapy | Behavioral | Demonstration and guided practice, caregiver-infant hands-on interaction practice, home exercise program, and support for strengthening parent-infant interaction on Cerebral Palsy basics. |
|
| Baseline to 6 weeks. |
| Feasibility of Groups | Change from baseline feasibility and acceptability of the group program on Parental Survey at 6 weeks. | Baseline to 6 weeks. |
| 28737004 | Background | Barfoot J, Meredith P, Ziviani J, Whittingham K. Parent-child interactions and children with cerebral palsy: An exploratory study investigating emotional availability, functional ability, and parent distress. Child Care Health Dev. 2017 Nov;43(6):812-822. doi: 10.1111/cch.12493. Epub 2017 Jul 23. |
| 25096631 | Background | Fernandez-Alcantara M, Garcia-Caro MP, Laynez-Rubio C, Perez-Marfil MN, Marti-Garcia C, Benitez-Feliponi A, Berrocal-Castellano M, Cruz-Quintana F. Feelings of loss in parents of children with infantile cerebral palsy. Disabil Health J. 2015 Jan;8(1):93-101. doi: 10.1016/j.dhjo.2014.06.003. Epub 2014 Jun 30. |
| 8660072 | Background | Lambrenos K, Weindling AM, Calam R, Cox AD. The effect of a child's disability on mother's mental health. Arch Dis Child. 1996 Feb;74(2):115-20. doi: 10.1136/adc.74.2.115. |
| 31178902 | Background | Festante F, Antonelli C, Chorna O, Corsi G, Guzzetta A. Parent-Infant Interaction during the First Year of Life in Infants at High Risk for Cerebral Palsy: A Systematic Review of the Literature. Neural Plast. 2019 Apr 15;2019:5759694. doi: 10.1155/2019/5759694. eCollection 2019. |
| 38255414 | Background | Svensson K, Sundelin H, Eliasson AC. Outcomes of a Parent-Delivered Baby-mCIMT Model for Infants at High Risk of Unilateral Cerebral Palsy Using Remote Coaching in Telerehabilitation. Children (Basel). 2024 Jan 15;11(1):101. doi: 10.3390/children11010101. |
| 24903062 | Background | Eliasson AC, Sjostrand L, Ek L, Krumlinde-Sundholm L, Tedroff K. Efficacy of baby-CIMT: study protocol for a randomised controlled trial on infants below age 12 months, with clinical signs of unilateral CP. BMC Pediatr. 2014 Jun 5;14:141. doi: 10.1186/1471-2431-14-141. |
| 27027732 | Background | Morgan C, Darrah J, Gordon AM, Harbourne R, Spittle A, Johnson R, Fetters L. Effectiveness of motor interventions in infants with cerebral palsy: a systematic review. Dev Med Child Neurol. 2016 Sep;58(9):900-9. doi: 10.1111/dmcn.13105. Epub 2016 Mar 29. |
| 40847391 | Background | Zhou X, Li X, Jin M, Zhou X, Liang J, Zhu J, Meng Q, Du Q. The effects of environmental enrichment in infants with or at high risk of cerebral palsy: an updated systematic review and meta-analysis. BMC Pediatr. 2025 Aug 23;25(1):642. doi: 10.1186/s12887-025-05954-5. |
| 33825191 | Background | Basu AP. Early intervention for infants at high risk for cerebral palsy: evidently important, but where's the evidence? Dev Med Child Neurol. 2021 Jul;63(7):762. doi: 10.1111/dmcn.14875. Epub 2021 Apr 6. No abstract available. |
| 33825199 | Background | Damiano DL, Longo E. Early intervention evidence for infants with or at risk for cerebral palsy: an overview of systematic reviews. Dev Med Child Neurol. 2021 Jul;63(7):771-784. doi: 10.1111/dmcn.14855. Epub 2021 Apr 6. |
| 33999106 | Background | Morgan C, Fetters L, Adde L, Badawi N, Bancale A, Boyd RN, Chorna O, Cioni G, Damiano DL, Darrah J, de Vries LS, Dusing S, Einspieler C, Eliasson AC, Ferriero D, Fehlings D, Forssberg H, Gordon AM, Greaves S, Guzzetta A, Hadders-Algra M, Harbourne R, Karlsson P, Krumlinde-Sundholm L, Latal B, Loughran-Fowlds A, Mak C, Maitre N, McIntyre S, Mei C, Morgan A, Kakooza-Mwesige A, Romeo DM, Sanchez K, Spittle A, Shepherd R, Thornton M, Valentine J, Ward R, Whittingham K, Zamany A, Novak I. Early Intervention for Children Aged 0 to 2 Years With or at High Risk of Cerebral Palsy: International Clinical Practice Guideline Based on Systematic Reviews. JAMA Pediatr. 2021 Aug 1;175(8):846-858. doi: 10.1001/jamapediatrics.2021.0878. |
| ID | Term |
|---|---|
| D002547 | Cerebral Palsy |
| ID | Term |
|---|---|
| D001925 | Brain Damage, Chronic |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
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| ID | Term |
|---|---|
| D026741 | Physical Therapy Modalities |
| D009788 | Occupational Therapy |
| ID | Term |
|---|---|
| D013812 | Therapeutics |
| D012046 | Rehabilitation |
| D000359 | Aftercare |
| D003266 | Continuity of Patient Care |
| D005791 | Patient Care |
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