Development of the Parent Forum: An in-person approach to supporting caregivers of youth with spinal cord injury

The Journal of Spinal Cord Medicine, 2019 · DOI: 10.1080/10790268.2019.1609873 · Published: May 1, 2019

Spinal Cord Injury Mental Health Social Support

Simple Explanation

The study describes the development and refinement of a 'Parent Forum,' a program designed to support caregivers of young people with spinal cord injuries. The Parent Forum was initially focused on caregiver health and well-being, but feedback led to incorporating more content about children's health needs. The iterative development process involved input from caregivers, clinicians, and researchers, emphasizing the importance of stakeholder involvement and adaptation based on participant feedback.

Study Duration

2 Years

Participants

41 caregivers of youth with SCI

Evidence Level

Process evaluation/case study

Key Findings

1
Caregivers initially reported increased positive problem-solving orientation after the first Parent Forum but also felt an increase in impulsivity, possibly due to information overload.
2
Redesigning the Parent Forum to include more discussion, child-focused topics, and streamlined logistics yielded positive reactions, as highlighted in focus groups.
3
Focus group feedback emphasized the value of shared information, connection with other caregivers, and the opportunity to step away from daily routines.

Research Summary

The study details the development of a hospital-based Parent Forum, an in-person intervention for caregivers of youth with spinal cord injury (SCI). The intervention was refined over two cycles based on feedback from caregivers, clinicians, and researchers, shifting from a focus on caregiver health to include more child-focused topics and discussion. The final intervention model, Parent Forum II, was well-received, highlighting the importance of stakeholder involvement, pilot testing, and adaptability in intervention design for similar populations.

Practical Implications

Involve Multiple Stakeholders

Engage caregivers, clinicians, and researchers in the design and development of interventions to ensure relevance and effectiveness.

Adapt to Participant Feedback

Be prepared to modify intervention components based on participant feedback to better meet their needs and preferences.

Provide Ongoing Support

Recognize the need for ongoing caregiver support and consider implementing programs that offer sustained assistance.

Study Limitations

1
The action research framework is time-consuming and resource-intensive.
2
Developing a comprehensive intervention program requires expertise across multiple disciplines.
3
The success of the intervention depends on support from funders, travel agents, evaluation consultants, and site stakeholders.

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