Functional recovery priorities and community rehabilitation service preferences of spinal cord injury individuals and caregivers of Chinese ethnicity and cultural background

Abstract

IntroductionSpinal cord injury (SCI) causes significant and permanent disability affecting motor, sensory and autonomic functions. We conducted a survey on the priorities of functional recovery and preferences for community rehabilitation services in a cohort of Chinese individuals with SCI as well as the primary caregivers. The study also investigated their views on advanced technology and research.MethodsAn online platform with a self-administered questionnaire was used to collect the opinions of clients that received services from an SCI follow-up clinic, a self-help association, or a non-government organization from 1 September−31 December 2021.ResultsEighty-seven subjects (74 individuals with SCI−48 tetraplegic, 26 paraplegic, and 13 caregivers) responded to the survey. Recovery of arm/hand function was given the highest priority among tetraplegics, followed by upper trunk/body strength and balance, and bladder/bowel function. Sexual function had a significant lower ranking than all priority areas except normal sensation (p < 0.05). Paraplegics viewed bladder/bowel function as the most important area of functional recovery, followed by walking movement, upper trunk/body strength and balance, elimination of chronic pain, and regaining normal sensation. There was no statistically significant difference among the top priority areas (p > 0.05). In contrast to previous studies done in Western populations, the study revealed that sexual function was ranked as the lowest by all 3 groups of respondents (tetraplegics, paraplegics, and caregivers). The majority of participants thought community rehabilitation services were inadequate. Most of the respondents were interested to try advanced technology which would facilitate their daily life and rehabilitation. About half of the individuals with SCI thought advance in technology and research could bring significant improvement in their quality of life in the coming 10 years.ConclusionThis survey is the first study specifically looking into the recovery and rehabilitation priorities of a Chinese population of individuals with SCI. This is also the first study to investigate the priorities of the primary caregivers of SCI individuals. The findings are useful as a reference for planning of future research and provision of rehabilitation services for the SCI community locally and in other parts of China.

Implementing Lived Experience Workshops in Regional Areas of British Columbia to Enhance Clinicians’ Confidence in Spinal Cord Injury Care: An Evaluation

“…The PLEX Community Survey identified SCI health-related topics including aging with SCI, bladder and bowel function, pain and inflammation, spasticity, sexual health, and upper limb function as some of their top priorities. This list of top priorities is consistent with the literature, which has reported aging with SCI, upper extremity function, bladder and bowel function, sexual function, standing and walking, and chronic pain as the top priorities for PLEX [16][17][18][19][20][21][22].…”

“…With the aging population, the topic of aging with SCI has become important and there is a need for evidence-based education in this area [16,17]. Other current key priorities for persons with SCI include upper extremity function, bladder and bowel function, sexual function, standing and walking, chronic pain, and stress management, as well as establishing a relationship with their clinician [18,19]. In providing this education, it has also been identified that there is a need to share experiences of what it is like to live with the secondary aspects of health beyond the physical, including peer support, mental health, and the social aspects essential to supporting individuals with SCI and their adjustment to life [16].…”

Functional Evolution of Spinal Cord Injury Patients Followed by the Rehabilitation Team Residing Outside the Capital of Antananarivo

“…However, in some African countries [11], [12], the situation of inaccessibility to rehabilitation care is considerable. Barriers to access include several factors such as geographical distance, lack of public transportation, financial costs associated with travel and care, as well as insufficient awareness and education about the importance of rehabilitation after a spinal cord injury.…”

Integrated Neuroregenerative Techniques for Plasticity of the Injured Spinal Cord

“…For patients with higher lesions, regaining arm and hand function was mentioned as the most important, while recovery of walking and sexual function was the highest priority for paraplegics. In a recent study on functional recovery priorities, most of the respondents were interested in trying advanced technology that would bring a significant improvement in their QOL [ 90 ]. Additionally, a better understanding of emotional and cognitive control could be critical for the selection of adaptive and flexible behavior [ 91 ].…”