Caring for Caregivers: Supporting Caregivers of Youth With Spinal Cord Injury

Erin Hayes Kelly, PhD

Status: Completed

Conditions: Spinal Cord Injuries

Treatments: Behavioral: Parent Forum; Behavioral: Psychological support

Study type: Interventional

Funder types: Other

Identifiers

NCT02083601

288993

Details and patient eligibility

About

The current study will implement and evaluate a multi-component, psychoeducational intervention for caregivers of children with spinal cord injury (SCI) ages 7-12. Two hypotheses will be tested. First, caregivers who participate in the intervention group will demonstrate better outcomes than caregivers in the control group. Second, children with SCI whose caregivers participate in the intervention group will demonstrate better outcomes than children with SCI whose caregivers participate in the control group.

Full description

The primary objective of this study is to implement and evaluate an intervention for caregivers of children with spinal cord injury (SCI) ages 7-12. A further objective of this pilot study is to identify which outcomes are being affected by the intervention. Past research has highlighted psychoeducational intervention (i.e., interventions including both educational/skills-building components and psychological support) as most effective in terms of impacting caregiver functioning. The current study will recruit 44 caregivers and their children with SCI. All caregivers will participate in a 2-day Parent Forum, an in-person educational session. Caregivers will then be randomly assigned to receive monthly phone calls from a mental health professional ("intervention group") or no additional targeted support ("control group"). We expect that caregivers who participate in the intervention group and their children will demonstrate better outcomes than caregivers in the control group and their children.

Enrollment: 53 patients

Sex: All

Ages: 7+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Primary caregivers of youth with SCI ages 7-12 years.
• Youth sustained their SCI at least one year ago.
• Both the caregiver and child are able to speak English.
• Both the caregiver and child are able and willing to sign informed consent/assent and Health Insurance Portability and Accountability Act (HIPAA) compliant research authorization.

Exclusion criteria

• Caregiver or child has significant cognitive limitations and/or psychiatric comorbidities. These conditions will be identified by a clinical psychologist or physician.

Trial design

Primary purpose: Supportive Care

Allocation: Randomized

Interventional model: Parallel Assignment

Masking: None (Open label)

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53 participants in 2 patient groups

Psychological Support

Experimental group

Description:

The intervention group will participate in the 2-day, in-person Parent Forum and receive monthly phone calls from a mental health professional for 12 months.

Treatment:

Behavioral: Psychological support

Behavioral: Parent Forum

No Psychological Support

Other group

Description:

This comparison group will attend the 2-day, in-person Parent Forum but will not receive long-term psychological support.

Treatment:

Behavioral: Parent Forum