Perspectives on life following a traumatic spinal cord injury

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

“… A finding was improved self-efficacy “therefore improved well-being”. Hall et al, ( 2021 ) USA Explore the experience of people with SCI, to inform a new rehabilitation continuum of care. Semi-structured individual interviews 10 people with SCI Aged 29–65 years 1–20 years post-SCI Described various factors affecting quality of life, including determinants identified by Hammell ( 2007 ).…”

“… 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 ...…”

“… Opportunity for (even small) ongoing improvement Limited opportunities for interventions and improvement after inpatient rehabilitation: the fitness centre was a rare opportunity, and the only one of its kind in the state Managing, reducing and preventing body and health problems Improved mood and hope Sense of control, moving forward, routine, accomplishment Social well-being, sense of belonging and acceptance Folan et al, ( 2015 ) Assistive technology (AT) for computer access Exposure to technology they would not have otherwise encountered Recommend early introduction to AT, to show its potential and integrate into rehabilitation Opportunities to practise skills and gain familiarity Previous inexperience and negative attitudes towards technology- these perceptions gradually changed. Initially slow and frustrating learning process Independence in valued tasks and roles, leading to a sense of control, meaning Coping with injury, adjustment Sense of ‘normality’ and self-worth Social interactions Enjoyment and fulfilment from learning something new Hall et al, ( 2021 ) Rehabilitat-ion Support of family/friends to navigate and access the rehabilitation system, as supports during rehabilitation, and for community participation and reintegration Own positive mindset, hope, self-advocacy, perspective Encouragement and support of rehabilitation providers Inadequate preparation for discharge Inadequate skills training for community participation, no practical training Lack of indvidualisation Low expectations of health professionals, lack of understanding Too short, lack of follow-up, difficulty accessing programs or funding, lack of specialist services in the community Ongoing environmental barriers limiting community access and participation This study mostly reported experiences (mostly negative) of rehabilitation: specific outcomes not reported, but some participants described living a good life. Hitzig et al, ( 2013 ) FES and treadmill walking/ exercise training Valued aspects listed without detail: staff, socializing, program helps the SCI community, organization of the program.…”

“…Well-being is defined poorly (if at all) in disability and rehabilitation research (Dijkers, 2005 ; Hill et al, 2010 ; Post, 2014 ; Simpson et al, 2020 ). A range of terms are used somewhat interchangeably with well-being in this body of literature (Svensson & Hallberg, 2011 ), including quality of life (Hill et al, 2010 ; Post, 2014 ; Tate et al, 2002 ), subjective well-being (Fuhrer, 2000 ), flourishing (Clifton et al, 2018 ), wellness (Carroll et al, 2020 ; Hall et al, 2021 ) and life satisfaction (Dunnum, 1990 ). Finding a clear and useful definition for these terms is also difficult.…”

Shaping Quality of Life with Nursing Assistance. A Grounded Theory Approach to Nursing Care for People with Physical Disabilities and Interactions with Carers in Long-Term Care

“…A study published at the beginning of 2021 addresses the challenges that people with a spinal cord injury experience in the transition to their own home (Hall et al, 2021). In particular, this study finds that the planning of the new life is a great challenge for these people.…”