Clinical trial NCT03985553: Development of a Self- Management Program for Parents With Spinal Cord Injury and Disease
Official title: Development of a Self- Management Program for Parents With Spinal Cord Injury and Disease
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Spinal Cord Injuries
Keywords: Parenting
Spinal Cord Injuries
Self-Management
Occupational Therapy
Lead sponsor: Washington University School of Medicine
Sponsor class: OTHER
Collaborators: name: Paralyzed Veterans of America
First posted: 2019-06-13
Enrollment: 10
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Intervention model description: Parents/grandparents/potential parents with SCI/D had the opportunity to attend and participate in a 4 week self-management program once a week related to parenting with a disability. The self-management sessions lasted approximately 2 hours once a week and were led by an occupational therapist. There was no control group or alternate intervention.
Primary purpose: SUPPORTIVE_CARE

Brief summary: The purpose of this project was to develop and pilot test a self-management program targeted toward individuals with Spinal Cord Injury/Disease (SCI/D) who are current parents or who are considering becoming parents. This Parenting Self-Management Program (PSMP) will allow parents to identify their goals for successful family participation and provide a structure for professionals to use when working with parents with SCI/D to best meet their needs. A draft PSMP was assembled by members of the research team. This draft was reviewed by experienced parents with SCI/D and professionals who work with individuals who have SCI/D through key informant interviews or focus groups. The feedback was used to modify the draft program and the PSMP was pilot tested with a group of 10 individuals with SCI/D who are new parents, newly injured or who want to improve their participation in parenting activities.

Detailed description: The project used a self-management approach grounded in self-efficacy theory to increase parenting self-efficacy among persons with spinal cord injury/disease (SCI/D). Program content focused on skill building through opportunities to master techniques and strategies; role modeling, problem solving, decision making, goal setting, and provision of reliable information. The use of a self-management program may also place parents with SCI/D at ease in sharing needs, as it is not an expert model by which a professional is passing judgment on their ability to care for their children. Many parents with disabilities are hesitant to seek professional services for fear of negative consequences such as losing custody of their children. Developing a program that is conducted as a partnership whereby parents direct much of the pace and content may be considered less threatening and more beneficial to those who have experienced distrust of the healthcare system.

There are no other self-management programs that specifically address the needs of parents with SCI/D. The project created a self-management program that was piloted in the St. Louis region and can be replicated across the country among other communities. While the national coordination center for families with disabilities, Through the Looking Glass, provides resource materials to parents across the country, they do not provide a structure for individual problem solving and to meet the needs of parents SCI/D on an individualized level. Providing a format for parents with SCI/D to successfully fulfill their parenting roles has a highly significant social implication; parents will be equipped to meet potential challenges and enjoy participation in their families. Limiting discrimination in the courts, seeking school accessibility, or simply decreasing pain while holding an infant are all worthy goals that could be achieved through a self-management parenting program.

Project Aims

1. To develop a four-week self-management program for parents with SCI/D to meet their needs in the parenting role and the needs of their families
2. To aid parents with SCI/D in building the skills and resources needed to continue or begin parenting in a successful manner
3. To disseminate the PSMP content to other regions, disability organizations, Paralyzed Veterans of America (PVA) chapters, healthcare organizations, and parenting groups to be replicated
4. To build a sustainable format for meeting the needs of parents with SCI/D that can be replicated and continued across the U.S.

Eligibility criteria: Inclusion Criteria:

* Age 18 or older, parent/guardian/grandparent with diagnosis of SCI/D, community dwelling, able to read at or above sixth grade level and either newly injured (sustained SCI in last year) or self-identified as being less experienced in their parenting role.

Exclusion Criteria:

* Individuals were excluded if they were under age 18, did not have SCI/D, were not a parent/guardian/grandparent or lived in an institution.

A convenience sampling method was used to recruit participants through distribution of flyers at rehabilitation facilities, independent living centers and word of mouth

Primary outcomes:
measure: Change in participation using the Participation Survey- Mobility (PARTS-M)
timeFrame: Prior to first session of the PSMP group and 4 weeks after the initial session of the PSMP group.
measure: Change in self-efficacy using the General Self-Efficacy Scale (GSE)
timeFrame: Prior to first session of the PSMP group and 4 weeks after the initial session of the PSMP group.
Secondary outcomes:
measure: Demographic items
timeFrame: Prior to first session of the PSMP group and 4 weeks after the initial session of the PSMP group as needed.
measure: Parenting tasks
timeFrame: Prior to first session of the PSMP group
measure: Skills and Knowledge
timeFrame: Prior to first session of the PSMP group and 4 weeks after the initial session of the PSMP group.
Other outcomes:
Locations:
city: Saint Louis
country: United States
facility: Washington University
state: Missouri
Study officials:
affiliation: Washington University Program in Occupational Therapy
name: Jessica Dashner, OTD
role: PRINCIPAL_INVESTIGATOR
References:
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