Psychometric properties of the Danish version of the Caregiver Burden Scale: Investigating predictors and severity of burden after stroke, spinal cord injury, or traumatic brain injury.

OBJECTIVE: To investigate (i) psychometric properties of the Danish version of the Caregiver Burden Scale, (ii) predictors of burden in caregivers of persons with stroke, spinal cord injury, or traumatic brain injury, and (iii) severity of caregiver burden, and compare level of severity of burden in caregivers of persons with stroke, spinal cord injury, or traumatic brain injury. DESIGN: Cross-sectional study. PARTICIPANTS: Pooled sample of 122 caregivers. METHODS: Psychometric properties including internal consistency, floor and ceiling effects, inter-item and item-total correlation were investigated using the Caregiver Burden Scale. Severity of burden was compared using Fisher's exact test and ANOVA, and predictors of burden were investigated using multiple linear regression models. RESULTS: The total burden score exhibited good internal consistency (α = 0.93), with no floor or ceiling effects. Longer time as a caregiver was a significant predictor of higher total score. The majority (52.2%) reported a low level of caregiver burden (below cut-off of 2.00). Mean scores on the Caregiver Burden Scale were not significantly different among caregivers across diagnostic groups. Differences were found when comparing spinal cord injury caregivers with brain injury caregivers (traumatic brain injury and stroke, collectively), χ2(2) = 6.38, p = 0.04, as spinal cord injury caregivers were more likely to report low levels of burden. CONCLUSION: Good psychometric properties were reported, and most caregivers reported a low level of burden, and longer time as a caregiver was associated with higher burden. Consequently, the Caregiver Burden Scale is a valid measure to use when measuring burden in caregivers of stroke, spinal cord injury, and traumatic brain injury patients.

Development and psychometric properties of appraisals of post traumatic spinal cord injury health scale in Iran.

STUDY DESIGN: Development and psychometrics study OBJECTIVE: To evaluate the reliability and validity of a new version of Appraisals of Post-Traumatic Spinal Cord Injury Health Scale (APTSCIHS) in the Persian language for persons with spinal cord injury (SCI). SETTING: The persons were selected from National Spinal Cord Injury Registry of Iran (NSCIR-IR) and Brain and Spinal Cord Injury Research center (BASIR). METHOD: This was a mixed sequential exploratory study that performed in two phases. In the qualitative phase, a systematic scoping review and 12 interviews with the participants were done. Finally, items were generated. In the quantitative phase, face, content, construct and convergent validity were assessed to evaluate validity. To evaluate construct validity, a cross-sectional study was conducted on 305 persons with TSCI along with internal consistency and stability assessments. All quantitative data analyses were conducted using SPSS 22 software. RESULTS: The content validity and reliability were indicated by Scale's Content Validity Ratio (S-CVR) = 0.73 and Scale's Content Validity Index (S-CVI) = 0.86, Cronbach's α = 0.9 and the Test re-test reliability using intra-class correlations were (ICC) = 0.97 to 0.98. Exploratory factor analysis determined eight factors which showed more than 52% of the variance. APTSCIHS had a significant and strong correlation with Appraisals of DisAbility Primary and Secondary Scale (ADAPSS) (r = 0.475, P < 0.001). CONCLUSION: Results showed the 36 items APTSCIHS tool had an acceptable validity and reliability in Iran, and it can help health care providers or even administrators improve the quality of the rehabilitation services and quality of life.

The role of Patient and public involvement (PPI) in pre-clinical spinal cord research: An interview study.

BACKGROUND: Patient and public involvement in research (PPI) has many benefits including increasing relevance and impact. While using PPI in clinical research is now an established practice, the involvement of patients and the public in pre-clinical research, which takes place in a laboratory setting, has been less frequently described and presents specific challenges. This study aimed to explore the perspectives of seriously injured rugby players' who live with a spinal cord injury on PPI in pre-clinical research. METHODS: Semi-structured interviews were conducted via telephone with 11 seriously injured rugby players living with spinal cord injury on the island of Ireland. A purposive sampling approach was used to identify participants. Selected individuals were invited to take part via gatekeeper in a charitable organisation that supports seriously injured rugby players. Interviews were transcribed verbatim and analysed thematically. FINDINGS: Six themes were identified during analysis: 'appreciating potential benefits of PPI despite limited knowledge', 'the informed perspectives of people living with spinal cord injury can improve pre-clinical research relevance', 'making pre-clinical research more accessible reduces the potential for misunderstandings to occur', 'barriers to involvement include disinterest, accessibility issues, and fear of losing hope if results are negative', 'personal contact and dialogue helps people feel valued in pre-clinical research, and 'PPI can facilitate effective dissemination of pre-clinical research as desired by people living with spinal cord injury.' CONCLUSION: People affected by spinal cord injury in this study desire further involvement in pre-clinical spinal cord injury research through dialogue and contact with researchers. Sharing experiences of spinal cord injury can form the basis of PPI for pre-clinical spinal cord injury research.

Assessing Regional Weather's Impact on Spinal Cord Injury Survivors, Caregivers, and General Public in Miami, Florida.

(1) Background: Climate change is increasing the already frequent diverse extreme weather events (EWE) across geographic locations, directly and indirectly impacting human health. However, current ongoing research fails to address the magnitude of these indirect impacts, including healthcare access. Vulnerable populations such as persons with spinal cord injury (pSCI) face added physiologic burden such as thermoregulation or mobility challenges like closure of public transportation. Our exploratory research assessed commute and transport to healthcare facilities as well as the knowledge, attitudes and behaviors (KAB) of pSCI regarding EWE and climate change when compared to pSCI caregivers (CG) and the general public (GP). (2) Methods: A KAB survey was employed to conduct a cross-sectional assessment of pSCI, CG, and GP in Miami from October through November 2019 using snowball sampling. Descriptive and logistic regression statistical analyses were used. (3) Results: Of 65 eligible survey respondents, 27 (41.5%) were pSCI, 11 (17%) CG, and 27 (41.5%) GP. Overall, pSCI reported EWE, particularly flooding and heavy rain, affecting their daily activities including healthcare appointments, more frequently than CG or GP. The overall models for logistic regression looking at commute to and attendance of healthcare appointments were statistically significant. pSCI self-report being less vulnerable than others, and a large proportion of each group was not fully convinced climate change is happening. (4) Conclusions: This study provided insight to the KAB of 3 population subgroups in Miami, Florida. pSCI are significantly more vulnerable to the effects of regional weather events yet exhibit disproportionate self-perception of their vulnerability. Continued and more comprehensive research is needed to characterize the barriers that vulnerable populations face during weather events.

Changes in functioning and health during the first 6-months of the COVID-19 pandemic among individuals with a spinal cord injury.

STUDY DESIGN: Single-cohort longitudinal survey design. OBJECTIVES: To identify what ongoing impact the COVID-19 pandemic has on functioning and health in individuals with SCI. Using the ICF model as a guide, outcome measures were chosen to explore potential constructs and aspects of health and functioning which may have been affected by regulations. SETTING: Online, Canada. METHODS: Participants provided demographic and clinical characteristics at baseline. They completed standardized online measures at three time points, each roughly one month apart (June, July, and August of 2020). The measures assessed mental health, resilience, boredom, social support, technology use, life space, and participation. Repeated measures ANOVAs were used to identify longitudinal changes for each measure. RESULTS: We collected data from 21 participants with SCI (mean age 54 years, 12 male). We found a large effect size for participation (η2 = 0.20), which increased over time. We also found medium effect sizes in both anxiety (η2 = 0.12) and social network usage (η2 = 0.12). Anxiety decreased over time and social networking usage fluctuated slightly but with an increase from time point one to time point two. CONCLUSION: The results indicate that individuals with spinal cord injury appear to be staying relatively stable during the pandemic with improvements in a few key aspects, such as potentially increased participation and decreased anxiety. The results also suggest that it is important to continue fostering ways for individuals with spinal cord injury to stay connected, engaged, and informed.

Reciprocal association between pain and quality of life after newly acquired spinal cord injury.

PURPOSE: Pain is highly prevalent in spinal cord injury (SCI) and a key determinant of quality of life (QoL). This is the first study to examine reciprocal associations between pain and QoL in patients undergoing their first inpatient rehabilitation after SCI. METHODS: Longitudinal data, with three measurement time points (1 month and 3 months after SCI onset, and at discharge from inpatient rehabilitation) from the Inception Cohort of the Swiss Spinal Cord Injury Cohort Study. Participants were 381 individuals aged ≥ 16 years with a newly diagnosed traumatic or non-traumatic SCI. 75.1% were male and the average age was 53.2 years. Random intercept cross-lagged panel models were conducted to examine the reciprocal association between pain intensity and QoL, as measured with the International SCI QoL Basic Data Set three individual items (satisfaction with life, physical health, and psychological health) and total score (mean of the three individual items). RESULTS: Both item and total QoL scores increased over time. 1 month: 5.3 (SD = 2.7), 3 months: 5.9 (SD = 2.3), discharge: 6.6 (SD = 2.0). Participants reported relatively low levels of pain intensity that remained stable over the course of inpatient rehabilitation. 1 month: 2.7 (SD = 2.3), 3 months: 2.6 (SD = 2.4), discharge: 2.7 (SD = 2.5). There were no significant cross-lagged associations between QoL and pain intensity across time. CONCLUSION: Results indicate that pain intensity does not predict changes in QoL during first rehabilitation, and vice versa. Associations between pain intensity and QoL reported by previous studies may be attributable to individual characteristics and timely events that simultaneously influence pain and QoL.

A 5-year longitudinal structural equation model of social isolation and probable major depression among participants with spinal cord injury.

OBJECTIVE: To develop longitudinal structural models of social isolation and probable major depression (PMD) over a 5-year interval among participants with spinal cord injury (SCI). DESIGN: Longitudinal structural equation modeling of self-report assessments collected during two follow-ups (2013 as Time 1, 2018 as Time 2) of a 45-year multicohort longitudinal study. Participants (n = 557) were identified from a specialty hospital in the Southeastern United States and two Midwestern hospitals and were initially enrolled in 1973-1974, 1984-1985, 1993-1994, or 2003-2004. PMD symptomology was measured by the Patient Health Questionnaire-9 (PHQ-9) and was defined by PHQ-9 scores ≥ 10. Social isolation was represented by two latent dimensions: social disconnectedness, objective component measured by activities, and perceived isolation, based on subjective appraisals. Structural equation modeling assessed the relationship among social disconnectedness and perceived isolation measured at Time 1 and PMD measured at Times 1 and 2. RESULTS: Both social disconnectedness and perceived isolation, measured at Time 1, were significantly related with PMD measured at Time 1 (rSD_Time 1 and PMD_Time 1 = .49, p < .001; rPI_Time 1 and PMD_Time 1 = .66, p < .001) and Time 2 (rSD_Time 1 and PMD_Time 2 = .37, p < .001; rPI_Time 1 and PMD_Time 2 = .54, p < .001), indicating participants with greater perceived isolation and social disconnectedness were more likely to have greater likelihood of PMD, both cross-sectionally and longitudinally. Perceived isolation was more strongly related to PMD compared with social disconnectedness. CONCLUSION: Social isolation was associated with both current and future depression symptoms. People with more years post-SCI were less likely to have PMD. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Associations between personality traits and depressive and anxiety symptoms among persons with spinal cord injury in first inpatient rehabilitation.

STUDY DESIGN: Retrospective analysis of medical records. OBJECTIVE: To assess personality traits in persons with spinal cord injury (SCI) and compare these with the general population group. Moreover, to explore associations between personality traits and depressive and anxiety symptoms among persons with SCI in first inpatient rehabilitation. SETTING: Specialized rehabilitation center in The Netherlands. METHODS: Data were used from a routine psychological screening, administered in the first weeks of admission (N = 67). Measures included the Hospital Anxiety and Depression Scale and the Dutch Personality Questionnaire, which includes subscales measuring neuroticism, social inadequacy, rigidity, hostility, egoism, dominance, and self-esteem. Correlational and regression analyses were conducted. RESULTS: Mean age of the participants was 58 (SD 17) years. The majority (63%) were male, and had a low lesion (57%). The participants scored significantly higher on dominance and lower on social inadequacy, hostility, and egoism in comparison with the general population. In the bivariate regression analyses, high neuroticism (ß = 0.42 and ß = 0.53) and low self-esteem (ß = -0.25 and ß = -0.29) were significantly associated with increased depressive and anxiety symptoms. In the hierarchical regression analyses, only high neuroticism was significantly associated with increased depressive (ß = 0.42, p < 0.05) and anxiety (ß = 0.55, p < 0.001) symptoms. CONCLUSIONS: Personality traits are not the same between the SCI population and the general population. Assessment of personality traits early in inpatient rehabilitation can help to identify individuals at risk of mood problems and, thereby, facilitate interventions. Future research with a larger, representative SCI sample, is required to confirm these findings.

Exploring the Experience of Living with Pain after Spinal Cord Injury: A Qualitative Study.

A spinal cord injury is a life-changing experience that results in functional limitations and an increased risk of secondary health conditions. People with spinal cord injury identify pain as the most devastating health problem following their injury that not only affects their social life but their mental well-being as well. This study is aimed at exploring the lived experience of living with pain by community-dwelling manual wheelchair users with spinal cord injuries. An explorative qualitative design was used to explore their experiences. In-depth interviews were recorded and transcribed, and the data were analysed using inductive thematic content analysis in the MAXQDA v2020. Fifteen manual wheelchair users with paraplegia participated in this study, and four themes were identified from their experience of living with pain: pain constantly lurks, pain is worse than the direct consequences of the SCI, pain is restrictive, and life continues despite the pain. Categories and subcategories included the participants being one with the pain; pain interfering with sleep; feelings of anger, isolation, and suicidal ideation; and uncertainties about what the future holds living with pain. Living with pain after SCI is a challenging feat, and effective management of pain is necessary to improve not only functioning and mobility but also mental health and life satisfaction.

Psychosocial Outcomes Associated With Types and Intensities of Physical Activity in People With Spinal Cord Injury: The Mediating Role of Self-Efficacy and Functionality.

BACKGROUND: Low rates of participation and quality of life (QoL) and high rates of psychological distress are common in spinal cord injury (SCI) population. Research has supported the mediating role of self-efficacy and functionality in improving psychosocial outcomes. Furthermore, evidence supports the impact of physical activity (PA) on psychosocial variables, but little is known about the types and intensities of PA. The objective of this study was to determine whether functionality and/or general self-efficacy (GSE) mediate the relationships between the various types of PA: (1) lifestyle and (2) leisure-time physical activity (LTPA); and various intensities of PA: (1) mild, (2) moderate, and (3) heavy PA with participation, psychological distress, and perception of QoL. METHODS: The Physical Activity Recall Assessment for SCI, and measures of functionality, GSE, participation, psychological distress, and perception of QoL were administered to 159 participants. Path analysis was performed using Jeffrey's Amazing Statistics Program. RESULTS: GSE significantly mediated, and functionality partially significantly mediated, the relationship between LTPA and psychosocial outcomes. GSE and functionality did not mediate the relationship between lifestyle activity and psychosocial outcomes. CONCLUSIONS: It is recommended that people with SCI perform LTPA on a regular basis to achieve psychosocial benefits. These programs should be accompanied by strategies to improve GSE.

Exploration of how valued living relates to resilience among people with spinal cord injury.

PURPOSE/OBJECTIVE: We lack critical information regarding promoting resilience in people with spinal cord injury (SCI). Living according to one's values may increase resilience. The aims of this study were to: (a) determine whether the degree to which individuals with SCI are living according to their values is associated with resilience; (b) identify values endorsed as most important; and (c) examine whether the importance of these values differs significantly by high vs. low resilience. RESEARCH DESIGN: Individuals with SCI (N = 202, Mage = 47.32) completed an online survey. Two linear regression analyses were performed to evaluate the extent to which domains of valued living (measured using the Valuing Questionnaire [VQ] and its subdomains, progress and obstruction, and the Valued Living Questionnaire [VLQ]) were associated with resilience. To explore whether resilience was associated with ratings of the perceived importance of specific types of values, we identified the top 10 most important values endorsed in the sample and performed independent sample t tests to analyze whether high (top quartile) versus low (bottom quartile) resilience groups differed on their importance ratings of specific types of values. RESULTS: Successful pursuit of values (VQ-progress) positively predicted resilience (B = 0.67, p < .001) while barriers in pursuit of values (VQ-obstruction) negatively predicted resilience (B = -0.16, p < .05). The VLQ score (living according to particular values) positively predicted resilience (B = 0.18, p < .001). Participants with high resilience levels rated the following values as significantly more important relative to those low in resilience: caring, respect, compassion, gratitude, responsibility, and contribution. CONCLUSIONS: Individuals with SCI who are able to pursue their values with intention had higher levels of resilience. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Experiences of people with spinal cord injuries readmitted for continence-related complications: a qualitative descriptive study.

STUDY DESIGN: Qualitative descriptive. OBJECTIVES: To describe the experiences of people with Spinal Cord Injury (SCI) re-admitted to the hospital due to continence-related complications. SETTING: Inpatient service of a large spinal unit in North-West of Italy. METHODS: Semi-structured interviews were conducted on a purposive sample of people with SCI (n = 11; age range 22-66 years, n = 5 females, n = 6 with cervical injuries), audio-recorded, and transcribed verbatim (duration range 38-52 min). Data were analysed inductively using the thematic analysis approach as described by Braun and Clarke. RESULTS: Three main themes were identified: (i) managing the frustration of continence-related complications; (ii) finding your way to deal with continence-related complications; (iii) identifying precise needs to deal with continence-related complications. Obtained findings highlighted the perceived emotional and physical burden suffered by people with SCI and their caregivers regarding the constant look for solutions and renounces to social participation, the different strategies implemented to address continence-related complications, and the unmet or partially met needs of people with SCI regarding support in transition to the community, infrastructure, and reliable information or education. CONCLUSIONS: Continence-related complications have a significant impact on the lives of people with SCI and their families. Interventions using technological tools and peer participation could reduce the burden associated with continence-related complications. Specific instruments are needed to facilitate evaluation, goal setting, and promote discussion of continence to allow HCPs to support people with SCI. Structured follow-up for SCI survivors should also focus on their needs to improve knowledge, facilitate decision making, and promote preventive behaviours.

Experiences of Introduction to and Participation in Quad Rugby: A Grounded Theory Approach.

Individuals with spinal cord injuries (SCI) report low physical activity participation levels. A lack of physical activity can lead to increased secondary health concerns, such as cardiovascular, psychological, genitourinary, and musculoskeletal complications. Adaptive sports, such as quad rugby, allow individuals with SCI to maintain appropriate physical activity levels. This grounded theory study aimed to explore the experiences of individuals learning about and participating in quad rugby after SCI in the United States. Twelve participants from seven states across the United States completed semistructured interviews. Four themes emerged: benefits of quad rugby participation, enabling quad rugby participation, barriers to quad rugby participation, and motivation for continued participation in quad rugby. This study highlights the importance of an early introduction to quad rugby after SCI and the biopsychosocial benefits of participation. Occupational therapy practitioners can address barriers identified in this study through innovative approaches and advocacy efforts.

People with spinal cord injuries (SCI) often report low levels of physical activity, leading to various health problems. Quad rugby, an adaptive sport, offers an opportunity for individuals with SCI to maintain physical activity levels. This study focused on understanding the experiences of individuals in the United States who learned about and participated in quad rugby after their SCI. Four key themes emerged through interviews with twelve participants from seven states: the benefits of quad rugby participation, enabling quad rugby participation, barriers to quad rugby participation, and motivation for continued participation in quad rugby. The findings emphasize the importance of introducing quad rugby early after SCI and highlight the physical, psychological, and social benefits of participation. Occupational therapy practitioners can play a crucial role in addressing the identified barriers through innovative approaches and advocacy efforts.

Pain and quality of life in athletes vs non-athletes with spinal cord injury: Observational study.

Spinal Cord Injuries (SCI) may cause non-motor symptoms, such as chronic pain, which impair quality of life (QoL)Objective: To investigate the relationship between adapted competitive sports, pain, and QoL in people with SCI in a limited resources setting population.Methods: This prospective cross-sectional observational study involved 16 athletes and 24 non-athletes with SCI and collected data on demographic and clinical variables including scores for pain and pain interference in daily life (Brief Pain Inventory, BPI), neuropathic pain severity (Neuropathic Pain Symptoms Inventory, NPSI) and Quality of life (Word Health Organization Quality of Life Assessment, WHOQOL-BREF). Non-parametric testing was used to compare the groups, and due to athletes being younger, multiple linear regression analyses were used to adjust for the effect of sports practice on the outcome variables when adjusting for age.Results: Athletes were younger (median age 36y) than non-athletes (median age 41.5y; Mann-Whitney U test P = 0.011), and QoL was superior in athletes for the Physical, Psychological, Social Relationships, Self-Evaluation domains, and Total Score when adjusted for age (P < 0.01). Despite having no significant differences in pain intensity scores (NPSI, P = 0.742 and BPI, P = 0.261) athletes had less pain interference on "Relationship with Others", "Enjoyment of Life", and Total score (P < 0.05). Participation in competitive adapted sports (P = 0.004) and Total Pain Interference (P = 0.043) were significantly associated with QoL scores in the multiple linear regression analyses.Conclusion: Athletes with SCI have better QoL and less pain interference in some aspects of life when compared to non-athletes.

Effect of Tele-exercise to Promote Empowered Movement for Individuals With Spinal Cord Injury (TEEMS) Program on Physical Activity Determinants and Behavior: A Mixed Methods Assessment.

OBJECTIVE: To assess the effects of group tele-exercise participation on physical activity (PA) determinants and behavior as identified by social cognitive theory (SCT) in individuals with spinal cord injury (SCI). DESIGN: This clinically registered non-randomized trial [NCT05360719] used a single-group parallel mixed methods design. Quantitative and qualitative primary measures were assessed at pre-program and after 8-week intervention completion (post-program), with an additional 8-week period retention to capture quantitative assessments only. SETTING: Community. PARTICIPANTS: Individuals with chronic SCI (N=22, injury duration 2-50 years) aged 26-68 years (10 male/12 female). INTERVENTION: An 8-week group tele-exercise program for individuals with SCI consisting of biweekly 60-minute classes delivered via live Web-conferencing software. MAIN OUTCOME MEASURES: Exercise self-efficacy (Exercise Self-efficacy Scale for SCI: ESES), outcome expectations for exercise (Multidimensional Outcome Expectations for Exercise: MOEES), weekly PA minutes measured through quantitative assessments (Leisure Time PA Questionnaire for SCI: LTPAQ), and parallel qualitative thematic analysis of focus group interview transcripts. RESULTS: Congruence between numeric and thematic findings was present for exercise self-efficacy and self-evaluative exercise outcome expectations. Improved exercise self-efficacy was influenced by exercise knowledge gained during program participation. Increased expectations of internal exercise outcomes, such as influence on psychological state and overall mood, occurred after program participation. Participant descriptions of the portability and sustainability of the program leading to added movement in everyday life were not reflected in the numeric scores of LTPAQ assessment. CONCLUSIONS: Participation in an 8-week group tele-exercise program positively affected personal determinants of PA behavior immediately after participation. Future investigations should include a control group and biophysical PA measures such as wearable digital health devices.

Perceived vocational support needs and return-to-work outcomes in the first 12-months post-discharge in individuals with acquired brain injury and spinal cord injury: A retrospective cohort study.

BACKGROUND: Return-to-work (RTW) is often viewed as an important outcome following acquired brain injury (ABI) and spinal cord injury (SCI), although not all individuals have vocational goals and many experience barriers to RTW. OBJECTIVE: This study investigated the relationship between RTW and psychosocial functioning at 12-months post-discharge after ABI and SCI and examined patterns of RTW according to perceived need for and receipt of vocational support. METHODS: A file audit was conducted for 69 participants with ABI (n = 44) and SCI (n = 25). Data on employment status and perceived vocational support at 3- and 12-months post-discharge, home and community participation, psychological distress, and health-related quality of life were extracted. RESULTS: Individuals in paid employment at 12-months post-discharge (22%, n = 15) reported significantly better psychosocial functioning at this timepoint compared to those not employed (78%; n = 54). For those not employed, three subgroups were identified: 1) Did not perceive the need for or receive vocational support (50%; n = 27); 2) Perceived vocational support needs were unmet (19%; n = 10); and 3) Perceived and received vocational support (31%; n = 17). Psychological distress was highest for those who perceived and received vocational support but were not employed. CONCLUSION: RTW was associated with better psychosocial functioning after acquired neurological injury. The findings highlight the need for clinicians to explore and revisit individuals' perceived need for and preferences for vocational support and monitor the psychological well-being of those with RTW goals that are not yet successful.

Needs Assessment of Self-Management for Individuals With Chronic Spinal Cord Injury/Disease.

Since the 1980s, survivorship for persons with spinal cord injury/disease (SCI/D) has significantly improved; however, life expectancy remains lower than the general population due to secondary health conditions (SHCs) that lead to decreased function and death. This study explored (1) facilitators and barriers to engaging in self-management (SM) for persons with SCI/D and (2) stakeholder perspectives on potential SM program components and content for intervention development. Around 38 participants with SCI/D responded to this cross-sectional study and needs assessment conducted at the University of Missouri, Columbia. Responses were analyzed to determine descriptive statistics. Participants indicated barriers to SM include transportation/distance, presence of SHCs, and a lack of local resources. Participants noted that virtual SM programs with strong psychological health/coping components were preferred. These findings should guide the development of an SM program tailored to SCI/D to reduce the prevalence and impact of SHC on the SCI/D population.

Persons with Spinal Cord Injury/Disease (SCI/D) experience secondary health conditions to a higher degree than the general population which impacts their function, quality of life, and lifespan. The factors that limit or support participation in self-management behaviors and programs were explored and we asked people with SCI/D what they would want out of a self-management program tailored to their needs. Results showed that virtual programs with a both group and individual sessions with a strong mental health component were preferred.

Perceived stress and pain interference in acute rehabilitation following spinal cord injury: Resilience as a moderator.

PURPOSE/OBJECTIVE: Higher levels of resilience is associated with improved pain outcomes in chronic pain and other neurological populations, but the role of resilience in pain following spinal cord injury (SCI) remains unclear. This study examined resilience as a moderator in the relationship between perceived stress and both pain intensity and interference during acute rehabilitation for SCI. RESEARCH METHOD/DESIGN: Individuals admitted to inpatient rehabilitation acutely following SCI (N = 57) completed measures of perceived stress, resilience, pain intensity, and interference. The Johnson-Neyman procedure was used to examine significance of conditional relationships that emerged. RESULTS: Resilience was found to moderate the relationship between perceived stress and pain interference, but not pain intensity, during inpatient rehabilitation. CONCLUSIONS/IMPLICATIONS: When resilience is low, perceived stress has a more profound and adverse impact on pain interference during inpatient rehabilitation, suggesting therapeutic strategies that build components of resilience are needed during acute rehabilitation following SCI. The relationship between stress, resilience, and pain may differ postinpatient rehabilitation for SCI and warrants further investigation. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Caregiving for People With Spinal Cord Injury Undergoing Upper Extremity Reconstructive Surgery: A Prospective Exploration of Lived Experiences, Perioperative Care, and Change Across Time.

Background: Nerve transfer (NT) and tendon transfer (TT) surgeries can enhance upper extremity (UE) function and independence in individuals with cervical spinal cord injury (SCI). Caregivers are needed to make this surgery possible, yet caregivers experience their own set of challenges. Objectives: This comparative study explored the perioperative and nonoperative experiences of caregivers of individuals with cervical SCI, focusing on daily life activities, burden, and mental health. Methods: Caregivers of individuals with cervical SCI were recruited and grouped by treatment plan for the person with SCI: (1) no surgery (NS), (2) TT surgery, and (3) NT surgery. Semistructured interviews were conducted at baseline/preoperative, early follow-up/postoperative, and late follow-up/postoperative. Caregivers were asked about their daily life, mental health, and challenges related to caregiving. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. Quantitative, single-item standardized burden score (0-100) data were collected at each timepoint. Results: Participants included 23 caregivers (18 family members, 4 friends, 1 hired professional). The surgeries often brought hope and motivation for caregivers. Caregivers reported increased burden immediately following surgery (less for the NT compared to TT subgroup) yet no long-term changes in the amount and type of care they provided. NS caregivers discussed social isolation, relationship dysfunction, and everyday challenges. Conclusion: Health care providers should consider the changing needs of SCI caregivers during perioperative rehabilitation. As part of the shared surgical decision-making approach, providers should educate caregivers about the postoperative process and the extent and potential variability of short- and long-term care needs.

Randomized Trial of Two Exercise Programs to Increase Physical Activity and Health-Related Quality of Life for Persons With Spinal Cord Injury.

Objectives: To compare the effectiveness of two different interventions that promote physical activity in individuals with traumatic spinal cord injury (SCI) and determine the effect of relapse prevention. Methods: A sequential, multiple assignment, randomized trial was conducted at a universally designed community-based exercise facility. Participants were individuals with traumatic SCI, >3 months post injury, levels C5 to T12, age ≥18 years (N = 79). After randomization, Bridge Program participants completed an 8-week personalized, less intense, exercise program informed by American College of Sports Medicine (ACSM) guidelines and supported with hands-on peer mentoring, exercise of choice, and caregiver training. Structured Exercise participants completed an 8-week program in a group format based on ACSM guidelines. After intervention, participants were randomized to receive or not receive relapse prevention for 6 months. The time and intensity of physical activity and psychological change in depression, anxiety, self-efficacy, and function were assessed with self-reported measures. Results: Compared to baseline, physical activity increased post intervention for both the Bridge and Structured Exercise programs. Compared to baseline, participants in the Bridge Program recorded fewer anxiety symptoms. No significant changes were noted for either program in depressive symptoms, self-efficacy, or function. There was no difference in relapse prevention between the two groups at 6 months. Conclusions: The Bridge Program, a novel personalized exercise program with peer support, exercise of choice, and caregiver training, and a structured exercise program both improved self-reported physical activity, but the Bridge Program also reduced anxiety symptoms. This study provides important insight into the limitations of commonly used measures of physical activity and psychosocial domains in people with SCI.