Introduction: Perceived injustice is a psychological construct conceptualized as an appraisal process characterized by severity and irreparability of injury/disability-related loss, externalized blame, and perceived unfairness. More simply, perceived injustice is the belief that one’s injury is undeserved and attributable to another’s error or negligence. Recent findings suggest that perceived injustice is an important risk factor for negative outcomes following spinal cord injury (SCI), however, no interventions exist to specifically target perceived injustice. Before developing an intervention it is important to develop a rich understanding of the sources and contributing factors of perceived injustice. Therefore, the purpose of this study was to qualitatively explore how individuals with SCI conceptualize perceptions of injustice to identify common sources and contributing factors of perceived injustice.
Methods: For this IRB approved qualitative study, participants were recruited using purposive sampling. The sample comprised 15 community-dwelling individuals who were enrolled in the SCI Model Systems National Database. Participants were contacted via telephone and completed the Injustice Experience Questionnaire (IEQ). The IEQ generates a total score and yields two factors: blame/unfairness and severity/irreparability of loss. IEQ scores were dichotomized into high (≥19) or low (<19) scores. A subset of four items from the IEQ (two representing blame; two representing severity of loss) were used as the basis of a qualitative, semi-structured interview completed via telephone. Qualitative data analysis involved coding and categorizing the data into themes and subthemes using open, axial, and selective coding and was conducted with NVivo software. Transcripts were coded by three research investigators. After coding each transcript, the three investigators met to review themes identified and reach consensus on coding disagreements. This process was repeated until topic saturation was met.
Results: Participants in this sample were mostly male (67%), white (73%), and married (53%). Average age of participants was 47 years and average time since injury was 15 years. The majority of the sample had cervical (60%) and incomplete (67%) injuries. White, unemployed males were more likely to report higher perceived injustice. Individuals with cervical and incomplete injuries were also more likely to report higher perceived injustice. Themes that emerged from qualitative analysis of the blame/unfairness items included fate or circumstance, self-blame, and blaming others. Themes related to the severity/irreparability of loss items included life with disability, lack of understanding of SCI, and focusing on the positive. The most frequent theme was lack of understanding regarding the severity of one’s SCI, as one participant described, “I think a lot of people see the wheelchair on the surface but maybe don’t realize the other things that come with a spinal cord injury – bowel, bladder, sexual function – things like that.” Three common sources of injustice were also identified: family, friends/peers, and society in general.
Conclusions: Findings from this study provide important information on the factors that lead to a sense of injustice for those living with SCI and can be used to inform future targeted interventions. Findings also highlight the need for improved education regarding SCI for family, friend/peers, and society at large.

Introduction: People with spinal cord damage (SCD) have numerous challenges that can influence their sexual interest, activities and satisfaction. There are relatively few studies of this area and no previous comprehensive study from Australia.
Aims: Determine sexual interest, activities and satisfaction in a community sample of people with SCD.
Methods: Survey (August 2013 – June 2014). People with SCD (n=151) living in the community, Australia.
Outcome measures: Demographic and clinical details, along with 3 measures of sexual interest, activities and satisfaction: the Sexual Interest and Satisfaction (SIS) scale, the Sexual Interest, Activity and Satisfaction scale (SIAS), and the Sexual Activity and Satisfaction (SAS) scale, and author developed questions on kissing and masturbation.
Results
Most participants were male (n=99, 65.6%), paraplegic level (59%), average of 46 years old (SD=13.5) and were median 11 years (IQR 4 – 21) after onset of SCD. Key findings included: sexual desire since SCD was 17% increased, 38% unchanged, 36% decreased and 8.6% non-existent (females lower desire; P = 0.005; age P>0.05); desired frequency of having sex was more often 51%, same as now 47%, less than now 2% (age and gender P>0.05); most participants (86%) had a sexual partner since SCD, with 65% indicating they had a current sexual partner; frequency of sexual activity with partner was 26% every other day, 17% about once a week, 17% 1-2 times a month, 27% 1-2 times a half year and 12% once a year or less (gender P>0.05; younger more frequent, P=0.007); frequency of passionate kiss now compared to before SCD, 16% increased, 23% unchanged, 35% decreased, 26% non-existent; ability to masturbate on own was 72% (males more able, P=0.02); frequency of masturbation was 3% daily, 6% every other day, 10% weekly, 8% monthly, 19 rarely, 54% never; generally enjoy the sexual part of life, very much 30%, quite a bit 26%, not so much 21% and not at all 23% (age and gender P>0.05); most of the time, quality of sexual relationship, 14% very satisfied, 37% satisfied, 33% dissatisfied, 16% very dissatisfied (gender >0.05, younger more satisfied P=0.006); and current sex life compared with before SCD, 6% much better, 9% better, 7% same as before, 26% worse, 51% much worse (gender>0.05, age worse P=0.03).
Conclusion
Many people with SCD had sub-optimal interest and satisfaction with the sexual part of their lives.

Are psychosocial resources associated with pain in spinal cord injury? Results from a population-based observational study in Switzerland

Céline Braunwalder, MA, 1
Rachel Müller, PhD, 1
Simon Kunz, PhD, 1
Hannah Tough, PhD, 1
Gunther Landmann, MD, 2
Christine Fekete, PhD, 1

Introduction: Chronic pain is highly prevalent in individuals with spinal cord injury (SCI) and is considered as one of the most burdensome consequences of SCI. In order to inform a comprehensive pain management, psychosocial resources need to be considered in pain research. However, evidence on the link between psychosocial resources and pain in SCI populations is mainly based on a few studies with limited power and taking into account only a limited selection of psychosocial resources. Therefore, this study aims to investigate the associations of a broad set of psychosocial resources with pain-related outcomes in a large sample of community-dwelling individuals with SCI.
Methods: Cross-sectional data from n=1’294 participants who completed the community survey of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) in 2017 was used. We used regression modelling to explore associations of psychosocial resources (self-efficacy, self-esteem, purpose in life, hope, optimism, positive affect, social support, belongingness) with pain-related outcomes (severity of pain problem, pain intensity, pain interference, depressive symptoms).
Results: Higher purpose in life, more hope, more optimism and higher self-esteem were consistently associated with lower severity of the pain problem, less pain intensity, less pain interference, and less depressive symptoms. Moreover, individuals with higher self-efficacy and higher positive affect reported less pain interference and less depressive symptoms. Individuals experiencing high social support and a high sense of belonging reported less depressive symptoms, whereas social support and belongingness were not associated with any other pain outcome.
Conclusion: This study provides evidence that psychosocial resources are negatively associated with pain-related outcomes in SCI. Thus this study supports the notion that strengthening psychosocial resources is an important target in order to treat chronic pain in individuals with SCI.

OBJECTIVE: To assess the quality of life (QOL) of adults with spinal cord injury (SCI) and those with stroke.
METHODS: Data was collected using the WHOQOL-bref and a questionnaire of sociodemographic variables. Eighty-seven adults with SCI (65 men, 22 women; mean age 51.8±12.0 years) and 69 adults with stroke (49 men, 20 women; mean age 53.7±12.1 years) were included in this study. Adults with complete injury (AIS A) were 29 (33.3%), and incomplete injuries (AIS B, C, D) were 58 (66.7%). Forty-seven of the adults with SCI were tetraplegia (54.0%), 40 adults with SCI were paraplegia (46.0%). The subjects with stroke in this study were ambulatory hemiplegics with normal cognition. The domains of QOL were compared between the groups of stroke and SCI and between the groups of tetraplegia and paraplegia.
RESULTS: Most Participants (73.7%) are unsatisfied with their QOL, and the physical, psychological and environmental domains showed a higher correlation with QOL. There was no significant difference in QOL total score and subdomains between the SCI and the stroke group. Within the SCI group, tetraplegia group experienced a lower satisfaction in physical and environmental domains compared to the paraplegic group (P<0.05). Educational level had the highest correlation with QOL (P<0.01), and duration of disease showed no significant correlation. When participants divided into four groups based on education level and disease (low-educated SCI; high-educated SCI; low-educated stroke; high-educated stroke), low-educated SCI group showed lower satisfaction of psychological domain compared to the other three groups.
CONCLSIONS: Spinal cord injury and stroke were negatively associated with QOL and there was no significant difference in QOL according to the diseases. The development of a QOL instrument specifically targeted to SCI would be required for more effective analysis and evaluation of QOL deficit in adults with SCI. Further longitudinal studies to assess the impact of injury level, injury completeness as well as socioeconomic status on SCI QOL are also needed.

Introduction: We know very little about the complications and quality of life for people with spinal cord injuries in Low- and Middle-income countries like Bangladesh with few studies on representative samples. The aim of this study was to quantify health status, quality of life and socio-economic situation six years post discharge in a representative sample of people with spinal cord injuries from Bangladesh.

Methods: This is a mixed retrospective and prospective inception cohort study which followed up all patients with spinal cord injuries (SCI) six years after discharge from a hospital in Bangladesh. Medical records identified all patients with SCI discharged from a hospital in Bangladesh in 2011. Participants were contacted by telephone or visited in their homes and interviewed in 2018 to determine the incidence of complications, quality of life, social situation and participation. Interviews were conducted using the SCI Secondary Conditions Scale, the Centre for Epidemiologic Studies Depression Scale (CESD), SF12 health survey, and the participation item of World Health Organisation Disability Assessment Schedule (WHODAS-V2). Additional questions were asked to obtain information about participants’ socioeconomic and employment status.

Results: Three hundred and forty-five patients were discharged from CRP in 2011 with SCI. Eighty-one had died by the time of interview leaving 264 people alive. Of these, three were unable to be located and one was unable to speak and was therefore not interviewed. Therefore, the final cohort that was interviewed was 260 participants. Among those patients, 145 used wheelchairs for mobility and 115 were able to walk at discharge. The median scores for the SCI Secondary Conditions Scale, CESD and WHODAS-V2 were 8 (4 to 13), 7 (4 to 13) and 12 (6 to 17) points, respectively. Fourteen percent of all participants and 23% of those who used wheelchairs had a pressure ulcer at the time of interview. 44% of participants were unemployed and 65% were living below the poverty line (median (IQR) income, USD 0 (0 to 91) per month). The quality of life scores as reflected in the mental and physical components of the SF12 were 54 (49 to 57) and 44 (40 to 51) points, respectively.

Conclusion: People with SCI in Bangladesh suffer from many complications after discharge from hospital. The most common problems are pressure ulcers. In addition, they are unemployed and living in poverty. Quality of life and participation in society are low.

Introduction
Physical and psychological secondary conditions (SCs) are common after spinal cord injury (SCI) and are directly or indirectly connected to reduced functionality, quality of life and social participation. The most frequent SCs following SCI are urinary tract infections (UTI), bowel incontinence, sexual dysfunction, pressure ulcers (PrU), pain, spasticity and issues related to circulatory, respiratory and musculoskeletal systems. Treatment of SCs require frequent hospital readmissions, and have a substantial, direct and indirect, economic impact. A rise in the life expectancy of people with SCI, associated with a heightened risk of chronic diseases, suggests an increasing prevalence of SCs.
Although differences in SCs have been identified among traumatic and non-traumatic SCI, the relationship of SC and completeness of injury is poorly understood. Therefore, this study aimed to describe the prevalence, identify differences and explore the correlations between physical and psychological SC’s in individuals with complete and incomplete SCI.
Methods
A multicentre, cross-sectional study, involving a consecutive sample of 222, SCI out-patients in 4 urban spinal units in Italy and Ireland was conducted.
A set of standardised, self-report questionnaires, composed of the Modified Barthel Index (MBI), the Short Form-8 (SF-8) quality of life scale, the Spinal Cord Injury Secondary Conditions Scale (SCI-SCS), the Patient Health Questionnaire-9 (PHQ-9), the General Anxiety Disorder-7 (GAD-7) and a sociodemographic questionnaire were administered.
Descriptive statistics were applied and bivariate analyses performed. One way ANOVA calculated the differences in SC between complete and incomplete injuries.
Results
Participants had a mean age of 50.7 years (SD=±14.3), were principally male (73.4%) and affected by paraplegia (65%) and traumatic injuries (80%). Complete (45.5%) and incomplete injuries (54.5%) were equally represented, and (26%) reported total or severe functional dependence. The SF-8 Physical (M=42.8 SD=±9.0) and Mental Component Summary (M=48.6 SD=±10.7) were moderately affected by SCI. Depressive symptoms were present in 18.5% of the sample and moderate or severe anxiety was present in 17%.
Joint/articular pain (59%), spasticity (58.6%) and UTI (55.7%) were most common in the total sample. Joint/articular pain (61.4%), spasticity (61.4%) and chronic pain (45.5%) were reported by the complete SCI sample, while UTI (65.5%), joint/articular pain (56.6%) and chronic pain (55.8%) were reported by the incomplete SCI sample.
Among people with complete SCI, the SCI-SCS total score correlated positively with depression (r=0.41; p<0.01) and negatively with Physical Component Summary (r= -0.35; p<0.01). The extent of SC of people with incomplete SCI correlated negatively with MBI (r= -0.34; p<0.01) and positively with depression (r=0.34; p<0.01). ANOVA showed statistically significant differences (p<0.05) in PrU, UTI and respiratory problems, with a higher incidence among those with incomplete SCI.
Conclusions
This original study focused on the prevalence, pattern and variation in the occurrence of SC’s among individuals with complete and incomplete SCI. Significant differences in the prevalence of UTI, PrU and respiratory problems were identified. While a more comprehensive evaluation of causal relationships is required, current findings have clinical and practical implications for individuals and their carers, as well as for healthcare professionals responsible for designing targeted interventions to reduce SC’s following SCI.

Factors associated with self-care activities in persons with spinal cord injury in South Africa

Tarryn Kim Jeftha1 (M.Sc), Blake Boggenpoel1 (M.Sc), Conran Joseph1,2 (PhD)
1University of the Western Cape, South Africa; 2 Karolinska Institutet, Sweden.

Introduction: A spinal cord injury translates into loss of muscle function, sensation, or autonomic function in parts of the body innervated by the spinal cord below the level of the lesion, essentially affecting activity levels. Given the high incidence and mortality after spinal cord injury (SCI) in South Africa, it remains important to assess morbidity, i.e. functioning, in persons with longer term TSCI in order to strengthen health care and rehabilitation services for those who survive. The aim of this study was to identify predictors of self-care activity in a heterogeneous sample of persons with SCI in South Africa.
Methods: One-hundred-and-thirty-eight adult persons with either traumatic or non-traumatic SCI were included, regardless of healthcare received, i.e. private vs. public-funded, in a cross-sectional survey study focusing on assessing activity and participation. A self-administered test battery, consisting of a demographic data gathering instrument, the International SCI Core Data Set, and standardised outcome measures (SCIM III), was used to collect data. Data was captured on Excel and then transferred to SPSS for analysis, using simple linear regression techniques.
Results: 138 persons, 104 males and 35 females, with an average age of 41 years. The mean (SD) of the outcome self-care activity according to the SCIM III subscale was 5 out of a possible 20 (SD: 6.49). The following factors were associated with better self-care activity: Single marital status (β=0.014, 95% CI=-0.05 - 0.00; p=0.050), traumatic cause of injury (β= -0.024; 95% CI= -0.05 – 0.00; p=0.003), absence of bladder dysfunction (β=0.353; 95% CI=0.01- 0.27; p=0.034;), lack of respiratory problems (β=0.394; 95% CI=0.01- 027; p=0.04), private medical care cohort (β=-0.216; 95% CI=-5.37- -0.73; p=0.011).
Conclusions: Risk factors affecting self-care in persons with longer-term SCI were diverse. For now, particular attention should be given to treatable conditions, such as bladder dysfunction and respiratory complications. Furthermore, those living with partners or family should be encouraged to maintain independence. Lastly, an audit of rehabilitation practices should be conducted in both health care systems with the aim of informing each system in relation to improving rehabilitation outcomes.

Introduction: The impact of social support on preventive behaviors after a spinal cord injury (SCI), including medical follow-up, varies in the literature, whether this support is family, friendly and/or professional-based. Methodological differences make it difficult to compare studies that dealt with these social data, whose quantitative aspect (+/- existing) is always associated with a qualitative aspect (+/- supporting). Thus, we found useful to carry out a study based on semi-structured interviews, to try to better understand this social functioning and to explain linked variations concerning the prevention of secondary conditions in paraplegic or tetraplegic persons.

Methods: We combined a « top-down » approach from a literature review to build a guide for our interviews and a « bottom-up » approach by interviewing 32 persons with a spinal cord injury (PwSCI) who completed their first rehabilitation for > 1 year. The interviews were recorded and systematically transcribed. The prospective analysis of their content was computer-assisted until saturation of our theoretical model. Codes were identified and categorized into domains and sub-domains related to social support and prevention (based on the risk of pressure ulcers and adherence to a long-term follow-up).

Results: Participants’ social support had a significant role in pressure ulcers prevention, either directly for assistance with positioning and surveillance in case of tetraplegia, or on a mode of counseling. "Reciprocity" appeared to be protective and was expressed in various ways: common choices of couples when pre-existing to the SCI; well-defined roles for a couple formed afterwards; helping each other in PwSCI couples.... While a "unilateral contribution" appeared less protective: multiple activities of the couple managed by the spouse; occasional control of the skin; iterative reminders to order....

Discussion: Our results clarify data about social support after an SCI. Social support would interfere early on the promotion of long-term health after an SCI according to Manns and May who described the perceived challenges within couples especially in the early period after discharge from first rehabilitation. King & al also reported the experience of PwSCI who took heart from prevention so as to avoid worry among their relatives. Self-management and the importance of empowerment, even associated with an active social support, have been well reported in several previous studies as major preventative factors for the recurrence of pressure ulcers.

Introduction: Long-term medical follow-up after a spinal cord injury (SCI) reduces frequency and severity of complications, notably pressure ulcers. We explored through a narrative approach the perceptions of persons with an SCI (PwSCI) in order to better understand their adherence to this follow-up. Our main objective was to determine common factors leading these people to join or not to an organized medical follow-up, with the final aim to build a conceptual framework representing follow-up and promotion of the long-term health of PwSCI from their point of view.

Methods: PwSCI who had completed their first rehabilitation period for > 1 year were particularly included with regard to two variables: 1 / with an actual medical follow-up or not and 2 / with a history of pressure ulcer or not. A review of the literature has led to the development of an inventory-table of items to be systematically addressed during interviews, which were systematically transcribed and afterwards prospectively analyzed, leading to a revision of the inventory-table as and when. Thematic saturation was reached at 28 interviews, and 32 interviews were finally completed.

Results: We grouped the domains and sub-domains from the interviews according to the knowledge, attitudes, beliefs and practices developed by the participants concerning pressure ulcer, its prevention and the available medical follow-up. In the long term, the inductive and deductive analysis of our data led to the emergence of three main areas concerning participants' perceptions about issues of prevention and long-term medical follow-up: 1 / to establish one's own truth, 2 / to integrate different periods of life and 3 / to negotiate follow-up after an SCI.

Discussion: The numerous initial information provided to PwSCI within specialized SCI departments have been the basis of our final conceptual framework. Staffs of these specialized units must receive training integrating ad hoc skills but also relational and communication objectives, that should also be periodically revalidated. The initial therapeutic education of PwSCI must involve mentors with SCI and be repeated throughout the life of patients to target their disposition to preventive programs at any point. We considered that the responsibility of the patient and the modulation of the follow-up both constituted the synthesis of major contextual factors interacting with promotion of PwSCI’s health in the long term.