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.

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.

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.

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

2020 ◽  
Author(s):  
Jianan Huang ◽  
Nadja Münzel ◽  
Anke Scheel-Sailer ◽  
Armin Gemperli
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Home Care ◽  
Family Caregivers ◽  
Respite Care ◽  
Cross Sectional ◽  
Care Services ◽  
Cord Injury ◽  
Professional Home ◽  
Professional Home Care

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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