Pilot Study of a Self-Management Program for Parents With Spinal Cord Injury or Disease

Design

The implementation pilot study used a mixed-methods approach, including collection of qualitative and quantitative data. The Parenting Self-Management Program involved pilot implementation and evaluation of the program with inexperienced parents with SCI/D. Four weekly Parenting Self-Management Program sessions were held, each lasting 2 hr, at either an occupational therapy school or a rehabilitation hospital. All study procedures were reviewed and approved by the university’s institutional review board.

Participants

Phase 2 pilot program participants were 10 parents recruited through rehabilitation facilities and disability organizations. The inclusion criteria for parents were as follows: age 18 or older, diagnosed with SCI/D, newly injured (e.g., sustained an SCI in the past year) or self-identified as being less experienced in the parenting role, community dwelling, and able to read at or above the sixth-grade level. Parents were excluded if they were under age 18, did not have SCI/D, or lived in an institution. One grandparent with SCI who performed parenting tasks multiple times a week was included; for the remainder of this article, Phase 2 participants are referred to collectively as “parents.” Parents included participants with varying levels of SCI, multiple sclerosis, and bilateral lumbosacral radiculopathy, consistent with the PVA’s definition of SCI/D (Paralyzed Veterans of America, 2020). Table 1 summarizes the participants’ characteristics.

Procedures

Parents completed an informed consent and assessment battery before the start of the first group session and a postassessment battery after Wk 4. At the beginning of the 4-wk program, parents were provided a Parenting Self-Management Program booklet with fact sheets on topics such as adaptive baby care techniques, advocacy in the courts, emergency planning, talking to children about disability, and wheelchair adjustment and management during and after pregnancy. Fact sheets addressing parenting topics were included on the basis of feedback from Phase 1 participants and allowed for a more personalized approach to accessing relevant resources according to each participant’s unique situation.

Each Parenting Self-Management Program session included an introduction to the topic, opportunity for participant interaction, goal setting, resource use, and session feedback. Parents were asked to develop a personalized weekly goal related either directly or indirectly to their parenting role. For example, a goal related to health and wellness might address building strength and energy needed to complete parenting tasks. The final product, which included scripts for session leaders to follow, a DVD of an interview with an experienced parent, a printed resource and information content of the four sessions, and 24 fact sheets, was distributed to all Phase 1 and 2 study participants and all PVA chapters because the PVA funded the project and may have other locations that want to use the piloted materials. Parents were compensated $50 for each session they attended and received an additional $200 upon program completion, totaling $400 for participation. In addition, each parent was eligible to receive up to $225 for adaptive baby care or child care equipment or home adaptations to assist them in completing parenting roles.

Measures

Parents completed an assessment battery before and immediately after participation in the pilot Parenting Self-Management Program. Assessments included demographic items, items measuring participant knowledge of disability and parenting topics, the General Self-Efficacy Scale (GSES; Schwarzer & Jerusalem, 1995), a modified version of the Participation Survey/Mobility (PARTS/M; Gray et al., 2006), and open-ended questions regarding parents’ participation in parenting tasks. Parents provided demographic information including gender, age, race, marital status, health status, primary and secondary impairments, personal assistance received, and primary personal mobility device used. The authors developed a parenting tasks section of the survey to inquire about parenting status (parent, grandparent, expectant parent, future parent), number of children and ages, disability status at child’s birth, age of child when disability occurred, most important and hardest baby care tasks, use of special equipment or adapted strategies, use of paid personal assistance, and use of unpaid personal assistance when the child or children were infants or toddlers and school aged. Additional items asked about future concerns, additional comments about parenting with a disability, and level of current knowledge or experience with disability and parenting topics.

Parents were asked to rate their perceived knowledge of disability and parenting topics on a scale from 0 (no knowledge) to 10 (very knowledgeable). The authors developed these items on the basis of the topics that were included in the Parenting Self-Management Program.

The GSES is a reliable (Cronbach’s αs of .76–.90), standardized, self-report scale used to rate perceived self-efficacy (Schwarzer & Jerusalem, 1995). The scale of the GSES items ranges from 1 (not at all true) to 4 (exactly true).

Parents were asked, on a modified version of the PARTS/M, how often they participated in parenting activities; their evaluation of their participation in terms of importance, choice, satisfaction, and control; the number and value of supports they used; and the influence of pain and fatigue on their participation in parenting activities. 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 et al., 2006). The evaluative items were scored on a scale from 1 (no choice, control, satisfaction, or importance) to 4 (a lot of choice or control or very satisfied or important). The items addressing the impact of perceived pain and fatigue on participation during parenting activities were rated on a scale from 1 (none) to 4 (a great deal).

The parenting tasks section of the survey, developed by the authors, used open-ended questions to gather information on ages of children, onset of disability with regard to parenting role, the most important baby care or child care tasks, the most difficult baby care or child care tasks, use of specialized equipment and strategies, use of paid assistance, and parenting tasks with school-age children. After the last session of the Parenting Self-Management Program, each parent completed the same assessment battery and an evaluation of the program.

Data Analysis

Descriptive statistics were used to analyze demographic data. Quantitative data were used to evaluate the impact of the Parenting Self-Management Program on parents’ knowledge obtained, self-efficacy, and participation in parenting from pre- to postintervention. Because of the small sample size, a Wilcoxon signed-rank test was conducted to compare median pre–post difference scores to quantify changes related to knowledge acquisition, self-efficacy, and participation in parenting. The evaluative items from the modified PARTS/M were combined, and an evaluative quality of participation (EQOP) in parenting variable was developed. The EQOP score was calculated by dividing the product of scores for choice and satisfaction by 5 minus the score for importance; scores ranged from 0.25 to 16.00, with a higher score indicating a higher evaluation of participation. Effect size was calculated to determine the magnitude of pre–post changes. The data were also grouped on the basis of the age of the participants’ children (infant, toddler/preschool, and school age) to investigate whether changes occurred in each group. Data were analyzed using IBM SPSS Statistics (Version 24; IBM Corp., Armonk, NY).