scholarly journals Identifying Required Skills to Enhance Family Caregiver Competency in Caring for Individuals With Spinal Cord Injury Living in the Community

2019 ◽  
Vol 25 (4) ◽  
pp. 290-302
Author(s):  
Gaya Jeyathevan ◽  
Jill I. Cameron ◽  
B. Catharine Craven ◽  
Susan B. Jaglal
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Family Caregivers ◽  
Social Services ◽  
Health Care Professionals ◽  
Family Members ◽  
Real Life ◽  
Well Being ◽  
Psychosocial Needs ◽  
Cord Injury

Background: Due to the earlier discharge of individuals with spinal cord injury (SCI), family caregivers are often left with limited time for learning caregiving skills, and they usually feel unprepared to undertake the caregiver role. Objective: Considering the key role of family caregivers in maintaining the overall health and well-being of the individual with SCI, the objective of this study was to determine the breadth of skills needed by family caregivers to enhance their competency in caring for individuals with SCI living in the community. Methods: A qualitative descriptive approach was used with semi-structured interviews. Thematic analysis was used to determine key themes arising from the experiences of individuals with SCI ( n= 19) and their family members ( n = 15). Results: Twenty-nine SCI family caregiving skills were identified and grouped into six caregiving processes signifying the multiple dimensions of the SCI caregiving role. These include monitoring and managing physical health and secondary health conditions, providing for psychosocial needs, decision making, time management, being flexible, and navigating the health and social services system. Conclusion: The current study demonstrated that development of multiple caregiving skills is crucial to enhance family members' competency in caregiving. These findings should further alert health care professionals that assessment of caregiving skills at regular intervals is necessary to help caregivers achieve mastery in situations where they are facing caregiving difficulties. Future programs need to be designed to include the skills that family caregivers need and use in real-life caregiving situations.

Spinal cord injury and family caregivers: A description of care and perception of service need

2005 ◽  
Vol 11 (1) ◽  
pp. 91 ◽  
Author(s):  
Michele Foster ◽  
Delena Amsters ◽  
Glenys Carlson
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Survival Rates ◽  
Well Being ◽  
Service Planning ◽  
Term Care ◽  
Personal Support ◽  
Cord Injury

As survival rates and life expectancies of individuals experiencing acquired disabilities such as spinal cord injury improve, greater demands are placed on health, rehabilitation and long-term care services. Further, family caregivers are assuming much of the caring responsibilities. This paper examines family caregiving in relation to individuals with spinal cord injury (SCI) in an Australian context. The paper is based on a descriptive survey conducted with 206 individuals with SCI, referred to a specialist SCI outreach service in Queensland, and 179 family caregivers. The survey collected social and demographic information and details of the type of care provided by family caregivers. It also explored family caregivers' perceptions of the types of services they require to assist them in their caring roles. Family caregiving typically involved physical, practical, and emotional support, and in many cases this occupied in excess of three hours a day, with no additional source of caregiving provided. The most frequently reported service types required by family caregivers included respite, personal support, information services, and health professional services. Mapping caregiver needs in this area establishes a critical basis for service planning and more importantly provides a guide for the development of a range of services dedicated to maintaining the health and well-being of family caregivers of individuals with SCI.

A study of whether individual and dyadic relations between spirituality and resilience contribute to psychological adjustment among individuals with spinal cord injuries and their family members

2019 ◽  
Vol 33 (9) ◽  
pp. 1503-1514 ◽  
Author(s):  
Kate Fiona Jones ◽  
Grahame Simpson ◽  
Lynne Briggs ◽  
Pat Dorsett ◽  
Malcolm Anderson
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Spinal Cord Injuries ◽  
Satisfaction With Life ◽  
Family Members ◽  
Well Being ◽  
Satisfaction With Life Scale ◽  
Cord Injury ◽  
Spiritual Well Being ◽  
The Impact

Objective: To test a model of spiritual well-being and resilience among individuals with spinal cord injuries and their family members. Design: Prospective cross-sectional observational data were analyzed by structural equation modelling. Setting: Inpatient and community services at one rehabilitation hospital. Subjects: Individual with spinal cord injury ( n = 50) and family member ( n = 50) dyads. Interventions: Standard rehabilitation, both inpatient and community. Main measure(s): Functional assessment of chronic illness therapy – spiritual well-being scale – expanded, Connor–Davidson resilience scale, positive and negative affect scale, depression anxiety and stress scale–21, satisfaction with life scale. Results: Median time post-injury was 8.95 months (IQR (interquartile range) = 14.15). Individuals with spinal cord injury and family members reported high scores for both spiritual well-being (66.06 ± 14.89; 68.42 ± 13.75) and resilience (76.68 ± 13.88; 76.64 ± 11.75), respectively. Analysis found the model had acceptable fit (e.g. chi-square goodness of fit statistic = 38.789; P = .263). For individuals with spinal cord injury, spiritual well-being was positively associated with resilience which, in turn, was associated with increasing positive affect and satisfaction with life. Among family members, spiritual well-being was positively associated with resilience. Resilience was then associated with lowered levels of depression and mediated the impact of depression on satisfaction with life. Limited evidence was found for mutual dyadic links, with the only significant pathway finding that resilience in the individual with spinal cord injury was associated with increased satisfaction with life among family members. Conclusion: Increased spirituality and resilience make a significant contribution (both independently and in combination) to positive psychological outcomes for both individuals with spinal cord injury and their family members.

scholarly journals TWIICE One powered exoskeleton: Effect of design improvements on usability in daily-life as measured by Cybathlon race performance

2021 ◽  
Author(s):  
Tristan Vouga ◽  
Jemina Fasola ◽  
Romain Baud ◽  
Ali Reza Manzoori ◽  
Julien Pache ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Positive Impact ◽  
Daily Life ◽  
Real Life ◽  
Well Being ◽  
Training Time ◽  
Thoracic Level ◽  
Cord Injury ◽  
Complete Spinal Cord Injury

Abstract Background Spinal cord injury leading to paraplegia affects the mobility and physiological well-being of nearly one in a thousand people. Powered exoskeletons can temporarily restore the ability to walk. Their relevance in daily life is still limited because of low performance beyond even ground. Cybathlon is an international competition promoting improvements in assistive technology. In this article we present the latest design and results of testing of TWIICE One 2018, one of the competing devices in the 2020 race. Methods A person with a motor-complete spinal cord injury at thoracic level T10 participated as race pilot. Training ahead of the race took place over one week at a rate of 2-5 hours per week. Time to perform each of the 7 tasks of the competition was recorded together with the number of repetitions. Performance is compared over training time and against 2016 race results. Results Progression was observed in all tasks and accounted for by both user training and technology improvements. Final competition rank was second out of 7 participating teams, with a record time of 4'40" min. This represents an average of 40 % improvement with respect to comparable obstacles of the 2016 race, explaining the two ranks of improvement since then. Conclusion These results help understand which features had a positive impact on real life performance of the device. Understanding how design affects performance is a key information to create devices that really improve the life of people living with paraplegia.

Users’ experiences of an evidence-informed health information website for spinal cord injury: A prospective qualitative study across the hospital and community setting (Preprint)

2020 ◽  
Author(s):  
Christina Cassady ◽  
William Ben Mortenson ◽  
Andrea F Townson ◽  
Shannon Sproule ◽  
Janice Jennifer Eng
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Health Information ◽  
Information Needs ◽  
Information Source ◽  
Family Members ◽  
Hospital Setting ◽  
Community Setting ◽  
Therapeutic Education ◽  
Cord Injury

BACKGROUND Access to quality health information is essential for self-management after serious injuries such as spinal cord injury (SCI). OBJECTIVE The goal of this study was to evaluate the role of a consumer website in addressing the information needs of persons and families with SCI, as well as its impact on their knowledge and behaviour. METHODS Persons with SCI and family members were recruited from 3 settings: an acute hospital, a rehabilitation hospital, and an SCI community organization to acquire perspectives from early after injury to the chronic stage. Participants were introduced to the Spinal Cord Injury Research Evidence (SCIRE) Community website, which was an internet site developed to provide evidence-informed health information about SCI in everyday language. After using the SCIRE Community website for 4 weeks, semi-structured individual interviews were conducted to explore purposes of use, user experience, and impact on knowledge and behaviour. Interview transcripts were analyzed using qualitative thematic analysis. RESULTS The participants were 24 individuals (18 persons with SCI and 6 family members). Thirteen participants completed the study in a hospital setting and 11 participants in a community setting. We identified 3 main themes in the data: (1) ‘An internet tool to support and empower persons and families’ described the empowering nature of access to an independent information source which enabled persons and families with SCI to take a more active role in their care; (2) ‘an accessible source of credible information’ described how users valued easy to access content with oversight by experts (i.e., perceived to be trustworthy); and (3) ‘Opportunities to increase impact’ outlined suggestions on creating opportunities to engage with content through active learning strategies and community connections. CONCLUSIONS Persons and families with SCI valued having access to an independent online health information website, especially early after injury, as it helped to empower autonomy and facilitated better communication between persons and families and healthcare providers. Our study provides support for the value of internet-based health information as a supplementary tool for therapeutic education for persons and families with serious health conditions such as SCI.

Goal Striving and Maladaptive Coping in Adults Living With Spinal Cord Injury: Associations With Affective Well-Being

2010 ◽  
Vol 23 (1) ◽  
pp. 158-176 ◽  
Author(s):  
James Mackay ◽  
Susan T. Charles ◽  
Bryan Kemp ◽  
Jutta Heckhausen
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Well Being ◽  
Maladaptive Coping ◽  
Goal Striving ◽  
Cord Injury

(486) Pain acceptance predicts indicators of distress, well-being and functioning in spinal cord injury

2015 ◽  
Vol 16 (4) ◽  
pp. S97
Author(s):  
A. Kratz ◽  
R. Hanks ◽  
C. Kalpakjian ◽  
C. Bombardier ◽  
D. Ehde
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Well Being ◽  
Pain Acceptance ◽  
Cord Injury

When a romantic partner has a spinal cord injury: Caregiving tasks and resilience as moderators of support quality on psychosocial distress and relational closeness

2020 ◽  
Vol 37 (8-9) ◽  
pp. 2551-2577
Author(s):  
Andrew M. Ledbetter ◽  
Kristen Carr ◽  
Gentry Lynn
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Romantic Relationship ◽  
Well Being ◽  
Psychosocial Distress ◽  
Support Providers ◽  
Beneficial Effects ◽  
Relationship Closeness ◽  
Cord Injury ◽  
Relational Closeness

Using a sample of 312 people in a romantic relationship with a partner who has a spinal cord injury (SCI), this study examined the separate and combined effects of caregiving tasks, resilience, and received support on the participant’s level of psychosocial distress. We also tested whether such distress might mediate the effect of the predictors on romantic relationship closeness. Results supported the beneficial effects of both resilience and receiving high-quality support, although the timing of the injury moderated these effects. Injuries sustained after relationship initiation particularly threaten well-being and closeness and, along with the burden of caregiving tasks, alter the extent to which received support and resilience are associated with health and relationship benefits. These results suggest that support providers should be sensitive to the context of the SCI and, for scholars, indicate the importance of further theorizing context in the theory of resilience and relational load.

scholarly journals The Relationship Between Psychological and Physical Secondary Conditions and Family Caregiver Burden in Spinal Cord Injury: A Correlational Study

2019 ◽  
Vol 25 (4) ◽  
pp. 271-280 ◽  
Author(s):  
Alessio Conti ◽  
Marco Clari ◽  
Maeve Nolan ◽  
Eva Wallace ◽  
Marco Tommasini ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Functional Independence ◽  
Secondary Conditions ◽  
Care Recipients ◽  
Cord Injury ◽  
Tract Infections ◽  
The Impact

Background: Caregiver burden (CB) is a consequence of providing care to people with spinal cord injury (SCI). However, there is a lack of clarity about the influence of secondary conditions of care recipients on family caregivers. Secondary conditions refer to the physical and psychological complications that can occur after SCI and lead to increased hospitalization and reduced functionality, quality of life, and social participation. Objective: To assess the impact of physical and psychological secondary conditions of people with SCI on the perceived burden of family caregivers. Methods: A multicenter, cross-sectional study of 56 dyads of family caregivers and individuals with SCI in two urban spinal units in Italy and Ireland. Care recipients completed a toolset consisting of demographic information and assessments of functional, physical, and psychological health. Caregivers completed a multidimensional measure of CB. Bivariate data analysis was used. Results: No significant differences between centers were identified. CB was found to be related to physical secondary conditions and functional independence but not to mental health of care recipients. Bladder dysfunction and urinary tract infections influenced all dimensions of CB, whereas pressure injuries influenced only the time-dependent dimension. Level and completeness of injury and duration of caregiving increased CB. Conclusion: Findings indicate the value of a reduction in secondary conditions not just for individuals with SCI but also for their family caregivers. To reduce the individual and family burden of secondary conditions, a two-pronged, multidimensional approach, focusing on self-management for care recipients and psychoeducational support for caregivers, is required.

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