Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI)

PURPOSE: Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI. METHODS: A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine. Individual interviews will be conducted with ≥20 adolescents aged 13–17 years at least 6 months’ post rehabilitation. RESULTS: Units involved will be described and compared, according to funding, attachment to an acute SCI unit, catchment area, number of beds, admittance and discharge procedures, availability of services, staff/patient ratio, content and intensity of rehabilitation programs, length of stay, measurement methods, follow-up services, health promotion services, and pediatric SCI prevention acts. The semi-structured interview guide will include experiences from acute care and primary rehabilitation, daily life, school, contact with friends, leisure time activities, peers, physical and psychological health, and the adolescents’ plans for the future. CONCLUSION: Based on the present protocol, this project is likely to provide new insight and knowledge on pediatric SCI rehabilitation and increase the understanding of pediatric SCI in adolescents and their families internationally.

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Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design

Spinal Cord ◽

10.1038/s41393-021-00726-1 ◽

2021 ◽

Author(s):

Wiebke Höfers ◽

Vivien Jørgensen ◽

Susanne Sällström ◽

Kristine M. Vege ◽

Mona Strøm ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Systems Of Care ◽

Cross Sectional ◽

Injury Rehabilitation ◽

Cord Injury ◽

Cross Sectional Design

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Caregiver Burden of Primary Caregivers for People with Spinal Cord Injury (SCI) Residing at Calicut District Kerala

Journal of Evolution of Medical and Dental Sciences ◽

10.14260/jemds/2021/101 ◽

2021 ◽

Vol 10 (8) ◽

pp. 458-462

Author(s):

Abidfaheem Thelakkadan ◽

Leena Kunnath Chacko

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Caregiver Burden ◽

Primary Caregivers ◽

Sampling Technique ◽

Total Sample ◽

Structured Interview ◽

Cross Sectional Study ◽

Cross Sectional ◽

Cord Injury

BACKGROUND The study aims to assess the caregiver burden of primary caregivers of people with spinal cord injury by using Caregiver Burden Scale (CBS), find the association between caregiver burden and selected socio-demographic variables and find the association between caregiver burden and characteristics of individuals with spinal cord injury. METHODS A cross sectional study was conducted from June 2019 to December 2019 among primary caregivers of patients with spinal cord injury (SCI) residing in selected communities of Calicut district, Kerala state, India. Purposive sampling technique was used to select samples. Caregiver burden was assessed by Zarit Caregiver Burden Interview. Characteristics of caregivers and individuals with spinal cord injury were collected by structured interview. RESULTS Study was conducted among 100 primary caregivers of individuals with spinal cord injury. The mean score of caregiver burden is 45.3 with SD 11.4. Out of the total sample, 40 % of the caregivers suffered from mild to moderate burden, another 40 % suffered from moderate to severe burden and the remaining 20 % of them suffered from severe caregiver burden. The study also found an association between caregiver burden score with characteristics of caregivers such as age (p = 0.038), gender (p = 0.02) and marital status (p = 0.048). Study also found an association between the gender of patient (p = 0.001) and level of injury (p = 0.001). CONCLUSIONS Majority of the sample showed moderate to severe level of caregiver burden. The study helped to find out multiple factors affecting caregiver burden. Health care system can identify these factors and consider them while planning and implementing different programs for individuals with SCI. Measures can be considered to alleviate caregiver burden by considering the findings of the current study and the community can plan different rehabilitative services which can reduce the burden of caregivers. KEY WORDS Caregiver Burden, Spinal Cord Injury, Primary Caregivers

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