scholarly journals Triangle of Healthy Caregiving for Veterans With Spinal Cord Injury: Proposal for a Mixed Methods Study

10.2196/14051 ◽  
2020 ◽  
Vol 9 (5) ◽  
pp. e14051
Author(s):  
Carol McMara Gibson-Gill ◽  
Joyce Williams ◽  
Denise Fyffe
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Mixed Methods ◽  
Caregiver Burden ◽  
Health Care Team ◽  
Cord Injury ◽  
Depth Interviews

Background Spinal cord injury (SCI) is a debilitating injury that results in chronic paralysis, impaired functioning, and drastically altered quality of life (QOL). The Department of Veterans Affairs (VA) estimates that approximately 450 newly injured veterans and active-duty members receive rehabilitation at VA’s Spinal Cord Injury/Disorders Centers annually. VA virtual health services use technology and health informatics to provide veterans with better access and more effective care management. The “Triangle of Healthy Caregiving for SCI Veterans” is a patient-centered intervention that incorporates SCI veterans’ caregivers into the VA SCI health care team and extends into the homes of veterans with SCI by using real-time clinical video teleconferencing (CVT). CVT facilitates video-clinic visits, which can include different types of clinical evaluations, therapy (physical/occupational), or psychosocial services. The “Triangle of Healthy Caregiving for SCI Veterans” builds on interactive, interdisciplinary health care relationships that exist between the veterans with SCI, their caregivers, and the VA SCI health care team. SCI veterans’ propensity to multiple secondary complications makes a healthy partnership crucial for the success of keeping better health and functional outcomes as well as quality of life while living in their homes. Objective The goal of the proposed mixed methods project will assess SCI veterans’, their caregivers’, and the VA health care team’s perspectives and experiences in the “Triangle of Healthy Caregiving for SCI Veterans” to determine the benefits, challenges, and outcomes for everyone involved in the intervention. Methods Data collection methods will be implemented over three sequential phases. First, in-depth interviews will be conducted with the telehealth coordinators to systematically document the administrative procedures involved in enrollment of veterans with SCI into the CVT system. Next, structured observation of the CVT enrollment process and logistics of home installation of the CVT system will be conducted to validate the content of the in-depth interviews and highlight any discrepancies observed. Semistructured interviews will be conducted to assess specific elements of the “Triangle of Healthy Caregiving for SCI Veterans” program, their perceived utility, and effectiveness of the CVT system as well as the general impressions of the impact of the intervention on the SCI veterans’ health and function outcomes, caregiver burden, and daily caregiver burden. Finally, the research team will conduct a focus group to evaluate the ways in which the “Triangle of Healthy Caregiving for SCI Veterans” is useful for health care delivery to veterans with SCI and support services to SCI caregivers. Results This proposal was funded in July 2017. It was reviewed and received institutional review board approval in March 2018, and the project was started immediately after, in the same month. As of September 2019, we have completed Phases I and III and have recruited 52 subjects for Phase II. We are beginning the data analysis. The study is projected to be completed in late summer of 2020, and the expected results are to be published in the fall of 2020. Conclusions The findings from this study will highlight the ways in which virtual health care technologies can be used to improve access to SCI specialized care for veterans and provide an estimation of the potential impact on clinical outcomes for veterans with SCI and their caregivers. International Registered Report Identifier (IRRID) DERR1-10.2196/14051

scholarly journals Triangle of Healthy Caregiving for Veterans With Spinal Cord Injury: Proposal for a Mixed Methods Study (Preprint)

2019 ◽  
Author(s):  
Carol McMara Gibson-Gill ◽  
Joyce Williams ◽  
Denise Fyffe
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Mixed Methods ◽  
Caregiver Burden ◽  
Health Care Team ◽  
Cord Injury ◽  
Depth Interviews

BACKGROUND Spinal cord injury (SCI) is a debilitating injury that results in chronic paralysis, impaired functioning, and drastically altered quality of life (QOL). The Department of Veterans Affairs (VA) estimates that approximately 450 newly injured veterans and active-duty members receive rehabilitation at VA’s Spinal Cord Injury/Disorders Centers annually. VA virtual health services use technology and health informatics to provide veterans with better access and more effective care management. The “Triangle of Healthy Caregiving for SCI Veterans” is a patient-centered intervention that incorporates SCI veterans’ caregivers into the VA SCI health care team and extends into the homes of veterans with SCI by using real-time clinical video teleconferencing (CVT). CVT facilitates video-clinic visits, which can include different types of clinical evaluations, therapy (physical/occupational), or psychosocial services. The “Triangle of Healthy Caregiving for SCI Veterans” builds on interactive, interdisciplinary health care relationships that exist between the veterans with SCI, their caregivers, and the VA SCI health care team. SCI veterans’ propensity to multiple secondary complications makes a healthy partnership crucial for the success of keeping better health and functional outcomes as well as quality of life while living in their homes. OBJECTIVE The goal of the proposed mixed methods project will assess SCI veterans’, their caregivers’, and the VA health care team’s perspectives and experiences in the “Triangle of Healthy Caregiving for SCI Veterans” to determine the benefits, challenges, and outcomes for everyone involved in the intervention. METHODS Data collection methods will be implemented over three sequential phases. First, in-depth interviews will be conducted with the telehealth coordinators to systematically document the administrative procedures involved in enrollment of veterans with SCI into the CVT system. Next, structured observation of the CVT enrollment process and logistics of home installation of the CVT system will be conducted to validate the content of the in-depth interviews and highlight any discrepancies observed. Semistructured interviews will be conducted to assess specific elements of the “Triangle of Healthy Caregiving for SCI Veterans” program, their perceived utility, and effectiveness of the CVT system as well as the general impressions of the impact of the intervention on the SCI veterans’ health and function outcomes, caregiver burden, and daily caregiver burden. Finally, the research team will conduct a focus group to evaluate the ways in which the “Triangle of Healthy Caregiving for SCI Veterans” is useful for health care delivery to veterans with SCI and support services to SCI caregivers. RESULTS This proposal was funded in July 2017. It was reviewed and received institutional review board approval in March 2018, and the project was started immediately after, in the same month. As of September 2019, we have completed Phases I and III and have recruited 52 subjects for Phase II. We are beginning the data analysis. The study is projected to be completed in late summer of 2020, and the expected results are to be published in the fall of 2020. CONCLUSIONS The findings from this study will highlight the ways in which virtual health care technologies can be used to improve access to SCI specialized care for veterans and provide an estimation of the potential impact on clinical outcomes for veterans with SCI and their caregivers. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/14051

Health Systems Indicators and Quality of Life in Persons with Spinal Cord Injury in South Africa

2021 ◽  
Author(s):  
Eugene Nizeyimana ◽  
Anthea Rhoda ◽  
Joyce Mothabeng ◽  
Francois Theron ◽  
Conran Joseph
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Health System ◽  
Nursing Care ◽  
Disability Pension ◽  
Private Health Care ◽  
Cord Injury

Abstract Background Knowledge of health system indicators are essential to the living situation of persons with disabilities. Assessing and collating the performance of health systems is important in order to identify areas of improvement. The main aim of this study is to assess the relationship between health system indicators and self-reported quality of life (QoL) among persons with spinal cord injury who accessed either public or private health care services in South Africa. Methods A cross-sectional survey was implemented to analyse and compare health system indicators and self-reported QoL for 200 persons over the age of 18 with either a traumatic or non-traumatic spinal cord injury. The survey further compared the impact of public or private health care access on these indices. Health system indicators include: access to disability pension, vocational rehabilitation, health and nursing care, public space, medications, assistive devices and transportation. Self-reported quality of life indicators include: satisfaction with health; ability to perform activities of daily living; yourself; personal relationships; and living conditions. A total score of Quality of life was calculated using these 5 domains. Results The highest scores for health indicators were access to a disability pension (76%) and access to required health care (72%). Indicators that negatively affected respondents’ lives were access to public spaces (70%), transport (56%), medications (56%) and nursing care (53%) which were reported to have made participants’ lives significantly harder. Participants who accessed private health care reported a higher QoL score in comparison with those in the public health system who reported more problems. There was a negative correlation between QoL and access to a disability pension and a positive correlation between QoL and access to public spaces, medication, transport and nursing care. Conclusion Performance of health system indicators influence living situation, and different healthcare insurances play a significant role in health system performance and self-reported QoL among persons with SCI in South Africa. Additionally, persons with SCI who have the ability to overcome the challenges encountered due to poor performing health systems report better quality of life.

scholarly journals Factors Associated with Quality of Life among Caregivers of People with Spinal Cord Injury

2021 ◽  
Vol 2021 ◽  
pp. 1-10
Author(s):  
Ata Farajzadeh ◽  
Malahat Akbarfahimi ◽  
Saman Maroufizadeh ◽  
Negar Miri Lavasani
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Caregiver Burden ◽  
World Health ◽  
Life Questionnaire ◽  
Factors Associated ◽  
Cord Injury

Purpose. Often people with spinal cord injury (SCI) require help from their caregivers to carry out activities of daily living. Such assistance may affect caregiver quality of life (QoL). This study investigates the QoL and its associated risk factors among caregivers of people with SCI to find possible ways to increase their QoL. Material and Method. A convenience sample of 135 Iranian caregivers of people with SCI participated in a cross-sectional study from the Brain and Spinal Injury Repair Research Center of Tehran (BASIR), Iran, from June 2018 to October 2019. The World Health Organization’s Quality of Life Questionnaire (WHOQoL-BREF), the Beck Depression Inventory-II (BDI-II), the Caregiver Burden Scale (CBS), and a demographic questionnaire were administered. Hierarchical multiple linear regression analysis was then applied to identify risk factors associated with caregiver QoL. Results. Moderate to highly significant negative correlations were observed between all domains of the WHOQoL scale and subscales of the CBS and the BDI-II. After controlling for demographic and clinical variables, depression, burden, and level of injury were found to predict caregiver QoL significantly. Furthermore, QoL was lower in caregivers of people with quadriplegia than paraplegia ( p < 0.05 ). Conclusions. The level of injury, self-perceived caregiver burden, and depression are associated with QoL for the caregivers of people with SCI. A holistic approach incorporating caregiver training, psychological interventions, and adequate support may enable better QoL for these caregivers.

scholarly journals Quality of life after spinal cord injury in Thai individuals: A mixed-methods study

2019 ◽  
Vol 39 (01) ◽  
pp. 35-55
Author(s):  
Anchalee Foongchomcheay ◽  
Aitthanatt Chachris Eitivipart ◽  
Jiraporn Kespichayawattana ◽  
Monticha Muangngoen
Keyword(s):  
Quality Of Life ◽  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Mixed Methods ◽  
Quantitative Data ◽  
Qualitative Data ◽  
Qualitative Investigation ◽  
Cord Injury ◽  
Health Related

Background: Patients with spinal cord injury (SCI) face various health-related difficulties. Physical limitations and health-related complications in individuals with SCI can lead to activity restrictions and lowering their quality of life (QoL). It is important to assess the QoL in population with SCI to gain more valuable insights into aspects of health-related QoL (HRQoL) that could play a key role in improving care for persons with SCI.Objective: To quantitatively measure the QoL in persons with SCI in Thailand and expand the results through qualitative investigation to provide meaning, context and depth of “how” and “why” they rated, defined and addressed their QoL in that way.Methods: The philosophical assumption of this study was set based on the post-positivist views using mixed-methods sequential explanatory design. The quantitative data were collected and analyzed in 101 Thai individuals with SCI using standardized Thai version of the Short Form Health Survey version 2 (SF-36v2), followed by the qualitative investigation of semi-structured interviews in 11 volunteers who participated in the SF-36v2 phase. Priority is given to quantitative data. The data integration occurred at the qualitative data collection through the data interpretation and discussion stage.Results: With regard to quantitative data, a recent study found a statistically significant difference [Formula: see text] in four domains for male and three domains for the female when comparing the SF-36 Thai normative data with SF-36v2 SCI data. Qualitative data revealed that the most salient themes of HRQoL in individuals with SCI were “supporting factors toward QoL” and “driving force post injury”. The integration of the findings revealed that the qualitative data could individually explain and define QoL as well as support quantitative results. The connection of both findings indicated that the higher scores in psycho-social variables and lower scores in physical domains of SF-36v2 in Thai persons with SCI may be due to unique Thai family traditions and community values.Conclusion: The scores on SF-36v2 and the replies in the qualitative investigation of QoL themes of Thai individuals with SCI were similar to those of other research, but this study is unique in that it specifically represents the Thai socio-environmental-cultural aspects.

scholarly journals Long term outcome of functional independence and quality of life after traumatic SCI in Germany

Spinal Cord ◽  
2021 ◽  
Author(s):  
Florian Möller ◽  
Rüdiger Rupp ◽  
Norbert Weidner ◽  
Christoph Gutenbrunner ◽  
Yorck B. Kalke ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Functional Independence ◽  
Term Outcome ◽  
Long Term Outcome ◽  
Cord Injury ◽  
Over Time

Abstract Study design Multicenter observational study. Objective To describe the long-term outcome of functional independence and quality of life (QoL) for individuals with traumatic and ischemic SCI beyond the first year after injury. Setting A multicenter study in Germany. Methods Participants of the European multicenter study about spinal cord injury (EMSCI) of three German SCI centers were included and followed over time by the German spinal cord injury cohort study (GerSCI). Individuals’ most recent spinal cord independence measure (SCIM) scores assessed by a clinician were followed up by a self-report (SCIM-SR) and correlated to selected items of the WHO short survey of quality of life (WHO-QoL-BREF). Results Data for 359 individuals were obtained. The average time passed the last clinical SCIM examination was 81.47 (SD 51.70) months. In total, 187 of the 359 received questionnaires contained a completely evaluable SCIM-SR. SCIM scores remained stable with the exception of reported management of bladder and bowel resulting in a slight decrease of SCIM-SR of −2.45 points (SD 16.81). SCIM-SR scores showed a significant correlation with the selected items of the WHO-QoL-BREF (p < 0.01) with moderate to strong influence. Conclusion SCIM score stability over time suggests a successful transfer of acquired independence skills obtained during primary rehabilitation into the community setting paralleled by positively related QoL measurements but bladder and bowel management may need special attention.

Excretory dysfunction and quality of life after a spinal cord injury: A cross‐sectional study

2021 ◽  
Vol 30 (9-10) ◽  
pp. 1394-1402
Author(s):  
De Gong ◽  
Yingmin Wang ◽  
Lirong Zhong ◽  
Mengmeng Jia ◽  
Ting Liu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Cord Injury
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