Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: cross sectional survey

Abstract BackgroundFamily caregivers assume substantial caregiving responsibilities for persons with chronic conditions, which leads to negative impact on their lives. Respite care is provided as a temporary relief for them. The design of appropriate respite care programs requires the identification of beneficiary subgroups for different types of services. The objectives of the study were to quantify the uptake of respite care services by family caregivers of persons with spinal cord injury, and to identify the main beneficiaries of the respective offers and the reasons for non-use.MethodsA cross-sectional survey of family caregivers of persons with spinal cord injury was conducted nationwide in Switzerland. The use of 11 different respite care services during the last 12 months was investigated, along with caregivers’ reasons for not using any respite service. Classification trees were used to characterize the beneficiaries and reasons for not using respite services.ResultsOne-third of family caregivers used at least one type of respite care service during the last 12 months. Utilization of respite care was found to be greater among those who employed professional home care (57% vs 24% among those without professional home care). There were marked cantonal differences in the utilization of respite care. The primary reason for not using respite services was “no demand” (80% among non-users of respite services), mainly among caregivers who were less emotionally affected by their caregiving tasks. Conclusions Utilization of respite care services primarily depends on living arrangements and place of residency and less on the functional status of the care recipient. Programs should thus be tailored to the cultural context of their potential users. This is best achieved through coordination with local health care professionals who can identify the needs, provide information, initiate referrals, and integrate the care into a larger support plan.

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What influences the use of professional home care for individuals with spinal cord injury? A cross-sectional study on family caregivers

Spinal Cord ◽

10.1038/s41393-019-0296-y ◽

2019 ◽

Vol 57 (11) ◽

pp. 924-932

Author(s):

Jianan Huang ◽

Diana Pacheco Barzallo ◽

Sara Rubinelli ◽

Nadja Münzel ◽

Mirjam Brach ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Home Care ◽

Family Caregivers ◽

Cross Sectional Study ◽

Sectional Study ◽

Cross Sectional ◽

Cord Injury ◽

Professional Home ◽

Professional Home Care

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Who are the beneficiaries and what are the reasons for non-utilization of care respite and support services? A cross-sectional study on family caregivers

BMC Health Services Research ◽

10.1186/s12913-021-06651-6 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Jianan Huang ◽

Nadja Münzel ◽

Anke Scheel-Sailer ◽

Armin Gemperli

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Home Care ◽

Family Caregivers ◽

Support Services ◽

Respite Care ◽

Cross Sectional ◽

Cord Injury ◽

Professional Home ◽

Professional Home Care

Abstract Background Family caregivers assume substantial caregiving responsibilities for persons with chronic conditions, such as individuals with spinal cord injury, which leads to negative impacts on their lives. Respite care and other services are provided as a temporary relief and support for them. Design of appropriate respite care programs depends on identification of beneficiary subgroups for the different types of service. This study aimed to quantify the uptake of different respite and support services for family caregivers, the reasons for non-use, and to explore the respective predictors. Methods A cross-sectional survey of family caregivers of persons with spinal cord injury was conducted nationwide in Switzerland. The use of 11 different respite and support services during the previous 12 months was investigated, along with caregivers’ reasons for not using any respite. Classification trees were used to characterize the beneficiaries and reasons for not using respite. Results About a third of family caregivers used at least one type of respite or support service during the previous 12 months. Utilization of respite care was greater among those who employed professional home care (57% vs 24% of those without professional home care). Marked cantonal differences were also observed in utilization of respite care. The primary reason for not using respite services was “no demand” (80% of non-users of respite services), mainly among caregivers who were less emotionally affected by their caregiving tasks. Conclusions Utilization of respite and support services depends more on place of residence and use of home care services than on functional status of the care recipient. Accordingly, programs should be tailored to the cultural context of their potential users. This is best achieved through coordination with local health care professionals who can identify needs, provide information, initiate referrals, and integrate the care into a larger support plan.

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Factors influencing specialized health care utilization by individuals with spinal cord injury: a cross-sectional survey

Spinal Cord ◽

10.1038/s41393-020-00581-6 ◽

2020 ◽

Cited By ~ 1

Author(s):

Elias Ronca ◽

Anke Scheel-Sailer ◽

Inge Eriks-Hoogland ◽

Mirjam Brach ◽

Isabelle Debecker ◽

...

Keyword(s):

Health Care ◽

Spinal Cord ◽

Spinal Cord Injury ◽

Health Care Utilization ◽

Care Utilization ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Factors Influencing ◽

Cord Injury ◽

Specialized Health Care

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Computer and internet use among people with long-standing spinal cord injury: a cross-sectional survey in the Netherlands

Spinal Cord ◽

10.1038/s41393-018-0237-1 ◽

2019 ◽

Vol 57 (5) ◽

pp. 396-403 ◽

Cited By ~ 2

Author(s):

Marcel W. M. Post ◽

◽

Jacqueline M. P. Leenders ◽

Marga Tepper ◽

Govert J. Snoek ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

The Netherlands ◽

Internet Use ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Cord Injury

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Environmental Barriers Experienced by People With Spinal Cord Injury Across 22 Countries: Results From a Cross-Sectional Survey

Archives of Physical Medicine and Rehabilitation ◽

10.1016/j.apmr.2020.04.027 ◽

2020 ◽

Vol 101 (12) ◽

pp. 2144-2156 ◽

Cited By ~ 1

Author(s):

Jan D. Reinhardt ◽

James Middleton ◽

Andrea Bökel ◽

Apichana Kovindha ◽

Athanasios Kyriakides ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Cross Sectional Survey ◽

Environmental Barriers ◽

Cross Sectional ◽

Cord Injury

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Knowledge, Attitudes, and Practices of People living with SCI towards COVID-19 and their Psychological State during In-patient Rehabilitation in Bangladesh

10.1101/2020.12.21.20248686 ◽

2020 ◽

Author(s):

Mohammad Anwar Hossain ◽

K M Amran Hossain ◽

Mohamed Sakel ◽

Md. Feroz Kabir ◽

Karen Saunders ◽

...

Keyword(s):

Spinal Cord ◽

Spinal Cord Injury ◽

Health Professionals ◽

Psychological State ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Attitudes And Practices ◽

Orthopedic Rehabilitation ◽

Cord Injury ◽

Knowledge Attitudes And Practices

AbstractStudy DesignA prospective cross-sectional survey.ObjectiveThe study aimed to examine the Knowledge, Attitudes, and Practices (KAP) of people living with Spinal cord injury (SCI) towards COVID-19 and their psychological status during in-patient rehabilitation in Bangladesh.SettingThe Centre for the Rehabilitation of the Paralyzed (CRP) and the National Institute of Traumatology and Orthopedic Rehabilitation (NITOR), two tertiary level hospitals in Dhaka, Bangladesh.MethodsFrom July to September 2020, a prospective, cross-sectional survey of SCI subjects, 13-78 years of age, carried out in two SCI rehab centers in Bangladesh. Data has been collected by face to face interview through a pretested, and language validated questionnaire on KAP and Depression, Anxiety, Stress (DASS). Ethical approval and trial registration obtained prospectively. As all the patients were previously living with Spinal cord injury (SCI), therefore, all the patients admitted/ attend SCI rehab centers were considered as SCI positive samples.ResultsA total of 207 people with SCI responded, 87%were male, and 13% were female with mean age34.18±12.9 years. 33.8% was tetraplegic and 66.2% was paraplegic and 63.8% of them were diagnosed ASIA-A, with motor score 45.38±19.5, sensory score 97.2±52, SpO2 95.07±3.3, and Vo2max 35.7±3.7mL/kg/min. 178 people had at least one health issue. Overall knowledge score was 8.59±2.3 out of 12, depression 11.18±8, anxiety 7.72±5.1, and stress was 9.32±6.7 from a total of 21 scores each. There was a correlation between Knowledge and DASS with age (P<.05); and Knowledge with gender (P<.05), and education (P<.01). Binary logistic regression found a higher association of Knowledge and DASS with gender (OR 6.6, 6.6, .95, 6.6; P<.01); and young age (OR.418, P<.01), illiterate (OR3.81, P<.01), and rural people (OR.48, P<.05) with knowledge. A linear relation was noted between depression and anxiety scores (r.45, P<.01) and stress scores (r.58, P<.01). A positive attitude was reported for the majority of subjects. SCI Persons reported they and the caregiver followed health advisory in consulting health professionals (65.7%), isolation (63.8%), droplet precaution (87.4%), and hygiene (90.3%).ConclusionsDuring in-patient rehabilitation in Bangladesh, the majority of SCI reported that they had communicated with health professionals and practiced behaviors that would reduce transmission and risk of COVID-19.

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