Provided support, caregiver burden and well-being in partners of persons with spinal cord injury 5 years after discharge from first inpatient rehabilitation

Scholten, Eline W M; Kieftenbelt, Anneroos; Hillebregt, Chantal F; Groot, Sonja de; Visser-Meily, Johanna M A; Post, Marcel W M

doi:10.1038/s41393-017-0047-x

Cited by 33 publications

(29 citation statements)

References 53 publications

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“…Persons with spinal cord injury (SCI), especially those with higher lesion levels, are dependent on care and assistance with daily living activities, with a majority provided by informal caregivers [1]. Caregiving carries a heavy objective and subjective burden [2, 3], which impacts the life of the informal caregiver [4]. The caregiving partners of persons with SCI reported a demand for external support [5].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2019

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Study DesignCross-sectional survey.ObjectiveThe objective of this study is to identify what characteristics of the family caregivers influenced the use of professional home care for persons with SCI in Switzerland.SettingCommunity setting, nationwide in Switzerland.MethodsQuestionnaires were filled out by the adult family caregivers of persons with SCI. Influence of characteristics of the caregivers was analyzed with regression models, adjusting for the characteristics of the person with SCI. Logistic regression was used for whether professional home care was used. Poisson regression was applied for the absolute and relative amount of professional home care.ResultsIn total, 717 family caregivers participated in the study (31% response rate). Among the participants, 33% hired professional home care for 10 h per week on average. The level of dependency of the persons with SCI had a significant influence on the utilization of care. The availability and proximity of the primary family caregiver, namely being spouse and cohabiting, reduced the amount of services used, whereas caregivers who worked full time employed more services. Higher levels of education and income increased the use of professional home care. Compared with their reference groups, caregivers with older age and those with a migratory background used comparable or larger absolute amount of professional services, which, however, represented a smaller proportion of total hours of care.ConclusionsAdequate support requires consideration of the characteristics of both the caregiver and of the person with SCI. The needs of family caregivers should also be assessed systematically in the needs assessment.

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Section: Introductionmentioning

confidence: 99%

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

et al. 2019

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“…Families with TBI report high frequencies of anxiety and depression symptoms [17, 18], and high emotional burden [7, 13]. Similar results have been found among families living with tSCI [6, 19]. Furthermore, impaired quality of life (QoL) has been reported for both groups [5, 10, 12, 13, 16, 20], for as long as up to 20 years after injury [21].…”

Section: Introductionmentioning

confidence: 79%

“…[5]. Acquiring a traumatic injury not only has an impact on the survivor, but will also affect their families, as they will have to adapt to the changed life situation as well [6–8]. The consequences can affect the family early on [9, 10], but also long term [11–13].…”

Section: Introductionmentioning

confidence: 99%

A manual-based family intervention for families living with the consequences of traumatic injury to the brain or spinal cord: a study protocol of a randomized controlled trial

Soendergaard

Wolffbrandt

Biering‐Sørensen

et al. 2019

Trials

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BackgroundAcquiring a traumatic injury constitutes a severe life change for the survivor, but also for the surrounding family. The paradigm of helping the family has primarily been on psychosocial interventions targeting caregivers. However, interventions including both survivor and caregivers should be an essential part of treatment, as the whole family’s functional level and mental health can be affected. The current study protocol presents a manualized family intervention for families living with traumatic injury to the brain (TBI) or spinal cord (tSCI). The objectives are to investigate if the intervention improves quality of life (QoL) and decreases burden. It is hypothesized that the family intervention improves problem-solving strategies and family dynamics, which will reduce the burden. This may improve the caregivers’ mental health, which will improve the support to the survivor and QoL.MethodsThe study is an interventional, two-arm, randomized controlled trial. During a 2-year period, a total of 132 families will be included. Participants will be recruited from East-Denmark. Inclusion criteria are (1) TBI or tSCI, (2) ≥ 18 years of age, (3) ≥ 6 months to ≤ 2 years since discharge from hospital, (4) ability to understand and read Danish, (5) cognitive abilities that enable participation, and (6) a minimum of one family member actively involved in the survivor’s life. Exclusion criteria are (1) active substance abuse, (2) aphasia, (3) prior neurologic or psychiatric diagnose, and (4) history of violence. Within each disease group, families will be allocated randomly to participate in an intervention or a control group with a ratio 1:1. The intervention groups receive the family intervention consisting of eight sessions of 90 min duration. Families in the control groups receive 2 h of psychoeducation. All participants complete questionnaires on QoL, self-perceived burden, family dynamics, problem-solving strategies, mental health, and resilience at pre-intervention, post-intervention, and 6-month follow up.ConclusionIf the intervention is found to have effect, the study will contribute with novel knowledge on the use of a manual-based intervention including the entire family. This would be of clinical interest and would help families living with the consequences of TBI or tSCI.Trials registrationClinicalTrials.gov, NCT03814876. Retrospectively registered on 24 January 2019.

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“…Therefore, it seems noteworthy that in our study the level of physical independence of the person with SCI or ABI was not found to be related with psychological distress, resilience, appraisals and coping. However, also in previous studies no strong relationships were found between physical independence of the patient and anxiety, depression or mental health of caregivers [21,43]. This could indicates that the objective severity of disabilities is subordinate to the subjective experience of the situation [43].…”

Section: Mediation Modelmentioning

confidence: 74%

Appraisals and coping mediate the relationship between resilience and distress among significant others of persons with spinal cord injury or acquired brain injury: a cross-sectional study

et al. 2020

Self Cite

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Background: Many significant others of persons with serious conditions like spinal cord injury (SCI) and acquired brain injury (ABI) report high levels of psychological distress. In line with the stress-coping model, the aim of the present study was to investigate the relationship between personal resource resilience and psychological distress, and whether appraisals of threat and loss, and passive coping mediate this relationship. Methods: Significant others (n = 228) of persons with SCI or ABI completed questionnaires shortly after admission to first inpatient rehabilitation after onset of the condition. The questionnaire included measures to assess psychological distress (Hospital Anxiety and Depression Scale), resilience (Connor-Davidson Resilience Scale-10), appraisals (Appraisals of Life Events scale, threat and loss) and passive coping (Utrecht Coping List). The PROCESS tool was used to test the presence of mediation. Confounding and differences between SCI and ABI were investigated. Results: High levels of psychological distress among significant others were found (34-41%). Fifty-five percent of the variance in psychological distress was explained by the relationship between resilience and psychological distress. This relationship was mediated by appraisals of threat and loss, and passive coping. The relationship between resilience and psychological distress was similar in the SCI and ABI groups. Conclusions: The results of our study indicate that appraisals of threat and loss and passive coping are mediating factors in the relationship between resilience and psychological distress. It seems useful to investigate if interventions focussing on psychological factors like resilience, appraisal and coping are effective to prevent or reduce psychological distress among significant others of persons with SCI or ABI.

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Provided support, caregiver burden and well-being in partners of persons with spinal cord injury 5 years after discharge from first inpatient rehabilitation

Abstract: High levels of perceived burden among partners and the associations between higher burden with lower well-being show the importance to prevent caregiver overload in partners of individuals with SCI. Monitoring burden during regular rehabilitation visits may help to early detect burden.

Cited by 33 publications

References 53 publications

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

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

A manual-based family intervention for families living with the consequences of traumatic injury to the brain or spinal cord: a study protocol of a randomized controlled trial

Appraisals and coping mediate the relationship between resilience and distress among significant others of persons with spinal cord injury or acquired brain injury: a cross-sectional study

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