Objective
To describe factors associated with pressure ulcers in individuals with spina bifida (SB) enrolled in the National Spina Bifida Patient Registry (NSBPR).
Design
Unbalanced longitudinal multicenter cohort study.
Setting
Nineteen SB clinics.
Participants
Individuals with SB (N=3153) enrolled in 19 clinic sites that participate in the NSBPR.
Interventions
Not applicable.
Main Outcome Measures
Pressure ulcer status (yes/no) at the annual visit between 2009 and 2012.
Results
Of 3153 total participants, 19% (n=603) reported ulcers at their most recent annual clinic visit. Seven factors–level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male sex–were significantly associated with the presence of pressure ulcers. Of these factors, level of lesion, urinary incontinence, recent surgery, and male sex were included in the final logistic regression model. The 3 adjusting variables–SB type, SB clinic, and age group–were significant in all analyses (all P<.001).
Conclusions
By adjusting for SB type, SB clinic, and age group, we found that 7 factors–level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male sex–were associated with pressure ulcers. Identifying key factors associated with the onset of pressure ulcers can be incorporated into clinical practice in ways that prevent and enhance treatment of pressure ulcers in the population with SB.
This project describes implementation of an educational intervention designed to initiate practice changes that support families and nurses during acute illness. An academic–practice partnership and digital storytelling methodology provided a foundation. A quasi-experimental research design included quantitative and qualitative measurement before and after the educational intervention. Themes identified in digital stories of nurse experiences caring for families provided direction for the educational intervention including the digital stories, empirical evidence, and proposed changes in nursing practice focused on families. Nurse participants ( n = 160) in the educational intervention reported positive responses on a qualitative questionnaire. Comparing pretest and posttest results of the Family Nurse Practice Scale reflected positive, though not significant change. Family members ( n = 49) reported significantly improved perceptions of support on 7 of the 14 items on the Iceland Perceived Family Support Questionnaire. This project highlighted digital storytelling’s power to promote family interventions and move family nursing knowledge into practice.
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