Development of a Self‐ Management Program for Parents With Spinal Cord Injury and Disease

Spinal Cord Injuries Clinical Trial

Official title:

Development of a Self‐ Management Program for Parents With Spinal Cord Injury and Disease

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT03985553
• Other study ID #: 201501151
• Status: Completed
• Phase: N/A
• Start date: November 3, 2015
• Est. completion date: June 29, 2016

Study information

• Verified date: June 2019
• Source: Washington University School of Medicine
• Contact: n/a
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 10
• Est. completion date: June 29, 2016
• Est. primary completion date: June 29, 2016
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

• Spinal Cord Injuries
• Wounds and Injuries

Intervention

Behavioral:
• Parenting Self-Management Program

Locations

Country	Name	City	State
United States	Washington University	Saint Louis	Missouri

Sponsors (2)

Lead Sponsor	Collaborator
Washington University School of Medicine	Paralyzed Veterans of America

Country where clinical trial is conducted

United States, 

References & Publications (9)

Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002 Oct -Nov;48(2):177-87. Review. — View Citation

Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA. 2002 Nov 20;288(19):2469-75. — View Citation

Gray DB, Hollingsworth HH, Stark SL, Morgan KA. Participation survey/mobility: psychometric properties of a measure of participation for people with mobility impairments and limitations. Arch Phys Med Rehabil. 2006 Feb;87(2):189-97. — View Citation

Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003 Aug;26(1):1-7. Review. — View Citation

Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M. Effect of a self-management program on patients with chronic disease. Eff Clin Pract. 2001 Nov-Dec;4(6):256-62. — View Citation

Luszczynska A, Scholz U, Schwarzer R. The general self-efficacy scale: multicultural validation studies. J Psychol. 2005 Sep;139(5):439-57. — View Citation

Nolte S, Elsworth GR, Sinclair AJ, Osborne RH. The extent and breadth of benefits from participating in chronic disease self-management courses: a national patient-reported outcomes survey. Patient Educ Couns. 2007 Mar;65(3):351-60. Epub 2006 Oct 5. — View Citation

O'Toole L, Connolly D, Smith S. Impact of an occupation-based self-management programme on chronic disease management. Aust Occup Ther J. 2013 Feb;60(1):30-8. doi: 10.1111/1440-1630.12008. Epub 2012 Nov 19. — View Citation

Signore C, Spong CY, Krotoski D, Shinowara NL, Blackwell SC. Pregnancy in women with physical disabilities. Obstet Gynecol. 2011 Apr;117(4):935-47. doi: 10.1097/AOG.0b013e3182118d59. Review. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Change in participation using the Participation Survey- Mobility (PARTS-M)	The PARTS/M is a reliable and valid self-report survey that assesses the participation of people with mobility limitations in various life activities and the impact of common environmental factors on participation (Gray, Hollingsworth, Stark, & Morgan, 2006). For the purposes of the PSMP, a modified version of the Parenting section of the PARTS/M was used. Participants were asked how often they participate in parenting activities, their evaluation of their participation (importance, choice, satisfaction, and control), the number and value of supports they may use, and the influence of pain and fatigue on their participation in parenting activities.	Prior to first session of the PSMP group and 4 weeks after the initial session of the PSMP group.
Primary	Change in self-efficacy using the General Self-Efficacy Scale (GSE)	The GSE was used to determine any influence of the program on participants' self-efficacy. Total score ranges from 10-40 with higher values indicating better outcome.	Prior to first session of the PSMP group and 4 weeks after the initial session of the PSMP group.
Secondary	Demographic items	Age, gender, race, marital status, education level, living situation, income, benefits received, diagnosis associated with SCI/D, time with disability, additional impairments, secondary conditions (pain & fatigue), health status, mobility device use, personal assistance use	Prior to first session of the PSMP group and 4 weeks after the initial session of the PSMP group as needed.
Secondary	Parenting tasks	Asked about number of children, ages, ages when acquired disability and open ended questions about most important and most difficulty task, use of strategies and assistance received when children were at various stages.	Prior to first session of the PSMP group
Secondary	Skills and Knowledge	Participants were asked to rate their knowledge of topics that were going to be included in the PSMP on a 0-10 scale.	Prior to first session of the PSMP group and 4 weeks after the initial session of the PSMP group.