Sexual Activity in Adults with Pediatric-Onset Spinal Cord Injury: Injury, Demographic, and Lifestyle Factors.

Background: Sexual development is a complex process of understanding oneself as a sexual being. Youth with spinal cord injury (SCI) navigate the typical phases of sexual development along with the physical and psychological sequelae of an SCI. As youth with SCI progress from adolescence to emerging adulthood, sexual activity-physical intimacy and sexual intercourse-is an important milestone. Objectives: The aims of the study were to (1) describe frequency of physical intimacy among adults with pediatric-onset SCI and (2) identify injury, demographic, and lifestyle factors that predict frequency of physical intimacy. Methods: Adults with pediatric-onset SCI who were former patients within a North American pediatric hospital system (N = 277) completed a structured telephone interview that included medical and sociodemographic information and standardized measures of psychological functioning. Participants rated physical intimacy and sexual intercourse frequency on a 5-point Likert scale, with a response of monthly, weekly, or daily classified as regular frequency and never or yearly as irregular frequency. Bivariate and multivariate analyses were conducted with physical intimacy frequency as the primary outcome. Results: Of the participants, 55% engaged in physical intimacy and 49% engaged in sexual intercourse with regular frequency. In logistic regression analyses, living independently of parents, being married, and higher perceived social integration increased likelihood of regular frequency of physical intimacy. Injury severity and secondary medical complications were not significant independent predictors of frequency of physical intimacy. Conclusion: Half of adults with pediatric-onset SCI engage in regular physical intimacy; this is below the estimates for the general population. Psychosocial factors are stronger contributors to physical intimacy frequency than SCI-related factors. Health care providers and researchers should focus on barriers to social integration and development of social relationships as factors that influence physical intimacy in this population.

Rural-urban disparities in healthcare factors and long-term health outcomes in individuals with pediatric-onset spinal cord injury.

Objective: Adults with pediatric-onset spinal cord injury (SCI) require long-term care and demonstrate elevated risk of secondary health conditions and psychosocial challenges. Medical providers are typically found in more populous and wealthy areas, resulting in a relative lack of providers in rural areas, a discrepancy even more pronounced among specialty providers. As a result, those who reside in rural regions potentially have unmet medical needs, representing a significant public health concern. The purpose of this study was to assess differences between rural and urban-residing participants with pediatric-onset SCI in factors affecting healthcare usage (e.g., employment, income, access to private insurance, community integration) and long-term healthcare outcomes (i.e., secondary health conditions and psychosocial functioning). Methods: Data were gathered from an ongoing study examining long-term outcomes of adults with pediatric-onset SCI. Participants (N = 490) completed measures of sociodemographics, injury characteristics, and medical outcomes. Participant zip codes were classified as rural or urban using the ProximityOne database based on the ZIP Code Tabulation Areas from the 2020 census. Results: Individuals residing in rural regions report lower levels of education, income, employment rates, private health insurance, and community integration (mobility, occupation, and social engagement), as well increased incidence of pressure injuries, urinary tract infections, hospitalizations, bowel incontinence, sleep difficulties, and perceived physical health. No differences in incidence of psychosocial functioning were identified. Conclusion: Mitigating identified disparities and obstacles to treatment of SCI due to residing in rural environments would result in important improvements in treatment outcomes and future prevention efforts of secondary health complications, improving the overall health of adults with pediatric-onset SCI.

Use of Appraisals of DisAbility Primary and Secondary Scale-Short Form (ADAPSS-sf) in individuals with pediatric-onset spinal cord injury.

OBJECTIVES: To investigate the psychometric properties and utility of the Appraisals of DisAbility Primary and Secondary Scale-Short Form (ADAPSS-sf), a measure of cognitive appraisals, among adults with pediatric-onset SCI. To examine the relation of the ADAPSS-sf to demographics, injury characteristics, and secondary health and psychosocial outcomes. STUDY DESIGN: A structured telephone interview was conducted to obtain measures of ADAPSS-sf, pain, sleep, secondary health complications, and psychosocial functioning. SETTING: Community in United States and Canada. PARTICIPANTS: Individuals who sustained an SCI at 18 years of age or younger (N = 115) were initially interviewed at age 19 years or older and followed annually. RESULTS: Study findings support sound psychometrics of the ADAPSS-sf. The measure demonstrated strong test-retest reliability and internal consistency. There were no differences on ADAPSS-sf scores in relation to current age, gender, race, etiology, injury severity, or injury level. Individuals who sustained SCI at an older age were more likely to endorse negative appraisals of their injury. Results suggest that higher negative SCI-related appraisals were related to higher mental health difficulties. Negative SCI-related appraisals were associated with sleep difficulties, pressure injuries, pain, distress from pain, and poor overall subjective ratings of health. CONCLUSIONS: This study confirms the use of the ADAPSS-sf in a pediatric-onset SCI adult population by demonstrating its good internal validity, test-retest reliability, convergent and face validity, and brevity. Moreover, the current study revealed that such appraisals are associated with both psychosocial and secondary health outcomes, further supporting the ADAPSS-sf as a valuable tool for clinicians and researchers.

Understanding transition for youth with spinal cord injury: Youth and caregiver perceptions.

Objective: The purpose of this study is to understand facilitators of and barriers to achieving positive transition results among youth with spinal cord injury (SCI), and to identify areas for intervention to improve transition outcomes. Design: This study utilized qualitative methods and analysis was completed using Interpretive Phenomenological Analysis. Participants: Participants included adolescents (n = 9, range = 13-18 years old), young adults (n = 14, range = 22-30 years old) with an SCI, and their respective caregivers (n = 17). Results: The majority of participants had paraplegia (78%) and complete injuries (52%). The majority of caregivers were mothers (88%). Two primary themes were identified: Facilitators of Transition and Barriers to Transition. From these, five subthemes were developed for each category. Conclusion: Youth with SCI and caregivers would benefit from organizations offering dynamic and progressive care options including social reintegration programs, peer-mentoring opportunities, and programs to teach individuals with SCI and families ways to develop motivation, resilience, and independent living skills. Last, better communication among healthcare providers and an increase of interdisciplinary and accessible adult healthcare facilities would foster greater transition successes for individuals with SCI.