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

Abstract

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.

Exploring well-being services from the perspective of people with SCI: A scoping review of qualitative research

“… Chemtob et al, ( 2018 ) Canada Explore perceptions of mentees with SCI about peer mentoring (in reference to self-determination theory) Semi-structured telephone interviews 13 people with SCI Mean age 49.3 years 54 per cent with paraplegia 15.3 years post-injury Peer mentoring Background included literature about link between peer mentoring and QoL. Conti, Dimonte et al, ( 2020 ) Italy Identify barriers and facilitators to education provided during SCI rehabilitation. Focus group interviews 22 people with SCI Mean age 49 years 14 with paraplegia, 8 with tetraplegia 4.5 years post-discharge Education provided throughout rehabilitation journey Self-management programs aim to improve QoL.…”

“… Geard et al, ( 2018 ) and Bergmark et al, ( 2008 ) Mobility training program Four 90-minute sessions/week continued until progress plateaued. Program began within 4 weeks of discharge from inpatient rehabilitation Step training on body weight supported treadmill, overground walking Exercise trainer Ekelman et al, ( 2017 ) Community fitness centre Community fitness centre designed for people with SCI 1:1 personal training Accessible and specialized equipment, e.g.,, body-weight supported treadmill, FES exercise machine, standing frame Lai et al, ( 2016 ) Teleexercise program Eight-week, 3x/week exercise program using upper body ergometer Real-time coaching and monitoring by an exercise trainer via tablet computer and biometric monitors Written instructions, visual targets for each session Initial setup conducted in-person Semerjian et al, ( 2005 ) Adapted exercise program Ten-week individualized exercise program Wheelchair-accessible weight machines, arm and leg ergometer (active and/or passive movement), standing frame with passive leg movement controlled by active arm movement, and body weight supported treadmill Various rehabilitation professionals Conti, Dimonte et al, ( 2020 ) Education Skill training and education Home visits, overnight leave, community outings Hall et al, ( 2021 ) Rehabilitation This study reported mostly limitations in specific rehabilitation activities Peer groups and support Most positive reports related to support of significant others, and own psychological resources ...…”

“… Feeling reluctant to leave perceived safety of the rehabilitation setting Platitudes Questions being discouraged Being provided with unnecessary assistance Fear of risks (e.g., falling) and use of analgesic medication limited independence Self-esteem, confidence, continued/resumed sense of self Accomplishment of important tasks and participating in valued roles Realization life isn’t over, “ I still had all these opportunities to live yet ”. (p. 253) Perspective about, and adjustment to, situation (often took 1–3 years) Positive attitude about self, which influences attitudes of others Chemtob et al, ( 2018 ) Peer mentoring program Being involved in the decision-making process, feeling in control of the mentoring sessions Content and style of sessions tailored to individual needs and personality Being able to ask questions and be listened to Flexibility in session timing, mentors approachable and available Care, empathy, comfort, reassurance, friendship Sensitivity and understanding from shared experience Role modelling, an example of what is possible and methods for achievement Realism about situation, problems and prognosis Advice and reassurance provided to family members Goals not being supported, or actively discouraged Not feeling understood Events and activities too far away or too late at night Autonomy, competence Positive expectations Emotional benefits Expanded networks Conti, Dimonte et al, ( 2020 ) Education provided during rehabilitation Self-management strategies helped with motivation and applying education Able to engage in education programs once they accepted a long-term change in their life Goal setting and planning to pace and prioritize education Own psychological strengths, especially motivation and determination Support of family in overcoming barriers Peer support and interaction Home visits and overnight leave in preparation for discharge Opportunities to engage in community and leisure activities whilst in hospital (rare) Not ready to receive, value or understand information in early stages Lack of energy to learn and apply information Need more time to learn skills and information, includ...…”

Utilizing a Team Kinesiology Model to Support Rehabilitative Care in Patients

“…Not only does exercise help patients to feel more connected and reintegrate into a society from which they had been isolated (especially in patients with limited mobility), but this feeling of community benefits all who are involved, including program administrators, faculty and interns. Providing long-term rehabilitation is especially essential in the case of SCI patients, as it has been reported to serve as the “only place to turn in times of need” [ 2 , 48 ]. TKM supports an extended network of empathy, connectivity and hope.…”

Are Social Relationships an Underestimated Resource for Mental Health in Persons Experiencing Physical Disability? Observational Evidence From 22 Countries

“…Furthermore, cognitive behavioral therapy was shown effective to enhance perceived social support and mental health after myocardial infarction [46] and is described as promising approach to intervene on maladaptive social cognitions in relation to feelings of loneliness or low belongingness [45]. A recent qualitative study on perceived barriers and facilitators for educational programs in persons with SCI showed that the involvement of peers and families in educational activities and personal motivation and commitment were key for the effectiveness of educational activities [47]. It thus seems essential to provide adequate information on the importance of social relationships for mental health in order to enhance personal commitment and willingness of families and persons with SCI to participate in educational programs.…”