Developing a consensus on the core educational content to be acquired by people with spinal cord injuries during rehabilitation: findings from a Delphi study followed by a Consensus Conference.

STUDY DESIGN: Three-round Delphi study followed by a Consensus Conference with selected stakeholders. OBJECTIVES: To identify a set of core educational content that people with spinal cord injury (SCI) need to acquire during rehabilitation. SETTING: The Delphi study was performed electronically. The Consensus Conference was held at the Città della Salute e della Scienza University Hospital of Turin, Italy. METHODS: A panel of 20 experts (healthcare professionals and SCI survivors) participated in a three-round Delphi study. In round 1, arguments for core educational content were solicited and reduced into items. In rounds 2 and 3, a five-point Likert scale was used to find consensus on and validate core educational content items (threshold for consensus and agreement: 60% and 80%, respectively). A Consensus Conference involving 32 stakeholders was held to discuss, modify (if appropriate) and approve the list of validated items. RESULTS: The 171 arguments proposed in round 1 were reduced into 74 items; 67 were validated in round 3. The Consensus Conference approved a final list of 72 core educational content items, covering 16 categories, which were made into a checklist. CONCLUSIONS: Consensus was achieved for a set of core educational content for people with SCI. The resultant checklist could serve as an assessment tool for both healthcare professionals and SCI survivors. It can also be used to support SCI survivors' education, streamline resource use and bridge the gap between information provided during rehabilitation and information SCI survivors need to function in the community.

Validation and psychometric evaluation of the Italian version of the Spinal Cord Injury Secondary Conditions Scale.

STUDY DESIGN: Validation cross-sectional study. OBJECTIVE: To adapt the Spinal Cord Injury Secondary Conditions Scale (SCI-SCS) to Italian and to assess the validity and reliability of this instrument. SETTING: Multicentre study in outpatient clinics of three urban spinal units across Italy. METHODS: After a five-step translation/validation process, the Italian SCI-SCS was administered in a toolset composed of a sociodemographic questionnaire, the Modified Barthel Index, the Short-Form 8, the Patient Health Questionnaire 9, and the General Anxiety Disorder 7. The Italian SCI-SCS construct validity was assessed through exploratory factor analysis (EFA). The internal consistency and test-retest reliability of the instrument were evaluated using Cronbach's α and the intraclass correlation coefficient (ICC) for the total scale and its subscales. Pearson's correlation coefficient with all administered instruments was calculated to evaluate the concurrent validity. RESULTS: One-hundred fifty-six participants were recruited from February to October 2018. EFA suggested a three-factor structure explaining 45% of the total variance. After experts' consideration about the clinical relevance of its components, a final version of the Italian SCI-SCS with four different subscales and 15 items was proposed. The total scale Cronbach's α was 0.73. The ICC agreement for test-retest reliability was 0.91. Correlations of the Italian SCI-SCS with the administered instruments were statistically significant (p < 0.05), highlighting congruent hypothesized relations. CONCLUSION: Findings of this study provided a first psychometric evaluation of the SCI-SCS. The modified Italian version of this tool may represent a valuable instrument for the longitudinal assessment of the impact of secondary conditions in people with SCI.

Adaptation and validation of the Caregiver Burden Inventory in Spinal Cord Injuries (CBI-SCI).

DESIGN: Validation cross-sectional study. OBJECTIVES: Even though caregiver burden (CB) represents a well-recognised concern among caregivers of people with a spinal cord injury (SCI), there are no specific questionnaires designed for its evaluation. This study aimed to assess the psychometric properties of the Caregiver Burden Inventory in Spinal Cord Injury (CBI-SCI), which was modified from its original version, and specifically its construct and reliability. SETTING: Multicentre study in four urban spinal units across Italy. The CBI-SCI was administered to family caregivers in outpatient clinics. METHODS: CBI-SCI was administered in a toolset composed of a sociodemographic questionnaire, the Family Strain Questionnaire-Short Form (FSQ-SF), the Short Form-36 (SF-36), and the Modified Barthel Index (MBI). The CBI-SCI construct validity was assessed through an exploratory factor analysis. The internal consistency of the questionnaire was examined using Cronbach's alpha (α) coefficient for the total scale and its subscales. Concurrent validity was evaluated performing Pearson's correlation coefficient with all instruments included in the toolset. RESULTS: The CBI-SCI was administered to 176 participants from February 2016 to September 2017. Factor analysis highlighted the five-factored structure of the questionnaire. The total scale Cronbach's α was 0.91 (p < 0.001). All the five subscales of CBI-SCI showed an acceptable internal consistency, ranging from 0.76 to 0.91 (p < 0.001). Pearson's correlation coefficients of the CBI-SCI with all the administered instruments were statistically significant (p < 0.001), showing congruent relations. CONCLUSION: The CBI-SCI, due to its validity and reliability, may represent a valuable instrument to evaluate the CB longitudinally in SCI.

Barriers and facilitators of education provided during rehabilitation of people with spinal cord injuries: A qualitative description.

BACKGROUND: After a spinal cord injury (SCI), individuals must acquire their maximum level of independence before returning to their previous social and working conditions. The education provided during rehabilitation is one of the basic but complex aspects that influence the health perspectives of people with SCI. Gaining the perspective of SCI survivors experienced barriers and resources to enhance the education process may assist healthcare professionals in understanding this complex aspect of their practice. Through a qualitative descriptive analysis, this study aimed to identify the perceived barriers and facilitators of education provided during the rehabilitation of individuals with SCI. METHODS: A purposive sample of 22 adults with SCI and at least six months of home experience was recruited. Participants were assigned into four mini focus groups according to their level of independence. The focus groups were audio-recorded, transcribed verbatim, and analysed using a thematic analysis. RESULTS: Three themes were identified: the readiness to education, the individual characteristics, and the environmental and social characteristics influencing education. Participants perceived education to be an ongoing process made up of consecutive phases, each of which had to be overcome before participants felt ready to reappraise their health and well-being. This process was affected by individual, environmental, and social factors. CONCLUSIONS: Education is constantly provided by all members of the rehabilitation team. These must stress the relevance of the contents presented, increase SCI survivors' motivation to set achievable goals, and consider filling the gap that the patients perceive between rehabilitation centres and available community resources. The findings of this study promote the design of structured educational programmes, increasing knowledge, and improve the health perspective of SCI survivors, their families, and providers.

The Relationship Between Psychological and Physical Secondary Conditions and Family Caregiver Burden in Spinal Cord Injury: A Correlational Study.

Background: Caregiver burden (CB) is a consequence of providing care to people with spinal cord injury (SCI). However, there is a lack of clarity about the influence of secondary conditions of care recipients on family caregivers. Secondary conditions refer to the physical and psychological complications that can occur after SCI and lead to increased hospitalization and reduced functionality, quality of life, and social participation. Objective: To assess the impact of physical and psychological secondary conditions of people with SCI on the perceived burden of family caregivers. Methods: A multicenter, cross-sectional study of 56 dyads of family caregivers and individuals with SCI in two urban spinal units in Italy and Ireland. Care recipients completed a toolset consisting of demographic information and assessments of functional, physical, and psychological health. Caregivers completed a multidimensional measure of CB. Bivariate data analysis was used. Results: No significant differences between centers were identified. CB was found to be related to physical secondary conditions and functional independence but not to mental health of care recipients. Bladder dysfunction and urinary tract infections influenced all dimensions of CB, whereas pressure injuries influenced only the time-dependent dimension. Level and completeness of injury and duration of caregiving increased CB. Conclusion: Findings indicate the value of a reduction in secondary conditions not just for individuals with SCI but also for their family caregivers. To reduce the individual and family burden of secondary conditions, a two-pronged, multidimensional approach, focusing on self-management for care recipients and psychoeducational support for caregivers, is required.