Care needs of persons with long-term spinal cord injury living at home in the Netherlands

Loo, May; Post, Marcel W.M.; Bloemen, J. H. A.; Asbeck, F

doi:10.1038/sc.2009.142

Cited by 76 publications

(60 citation statements)

References 19 publications

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“…Caregivers also perform a range of duties and roles including support for ADLs, nursing care, prevention of secondary health conditions, housekeeping, emotional care and practical care (errands). 9,16,17,22 The range of duties and roles identified in these studies may help explain the range in amount of informal care. Although some studies may have had clear operational definitions of what constituted care, these varied widely across studies.…”

Section: Description Of Caregiversmentioning

confidence: 99%

“…Table 2 lists descriptive studies that were included. Of these studies, one reported the results of research with caregivers themselves, 9 nine reported research with individuals with SCI 8,[16][17][18][19][20][21][22][23] and one reported results of research with both caregivers and individuals with SCI. 24 The study that reported research with caregivers only was specific to informal caregiving.…”

Section: Level Of Evidencementioning

confidence: 99%

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Caregiving services in spinal cord injury: a systematic review of the literature

2016

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,5 and the SCIRE Research TeamStudy design: PRISMA guided systematic review. Objectives: To summarize and characterize the literature pertaining to the nature of and factors associated with caregiving services provided to individuals with spinal cord injury (SCI) and identify areas for interventional research to address the needs of care recipients. Data Sources: PUBMED/Medline, CINAHL, PsycINFO, EMBASE, Social Services Abstracts and Social Work Abstracts databases. Methods: Qualitative and quantitative peer-reviewed publications that were written in English were included if they described the nature of caregiving services in SCI, factors influencing the use of and access to caregiving services or described interventions to address caregiving needs of individuals with SCI. Results: Sixteen papers were selected. The level of evidence for included studies ranged from 2 (highest) to 5 (lowest). Eleven studies described the nature of caregiving services, demographics of caregivers and recipients and factors associated with requiring care. Five studies described caregiving interventions. Conclusion: Caregiving services in SCI are predominantly provided by informal caregivers who are female. Quality of care from informal caregivers matches or exceeds quality of formal care. Total hours of care are dependent on the injury level and severity and care needs of the individual. Caregiver training is an important theme and has positive preliminary results on the quality of care provided. Intervention-based research is limited; further research to increase independence in activities of daily living and instrumental activities of daily living would reduce the need for caregiving hours.

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Section: Description Of Caregiversmentioning

confidence: 99%

Section: Level Of Evidencementioning

confidence: 99%

Caregiving services in spinal cord injury: a systematic review of the literature

2016

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“…Questions regarding social participation and daily life were adopted from van Loo et al 1 and the original Dutch version was translated into English. Secondary health conditions determined from this study were placed into a categorical checklist.…”

Section: Questionnairementioning

confidence: 99%

“…Research indicates individuals with SCI experience 8-14 secondary conditions per year with more than one condition typically occurring concurrently. [1][2][3] Respiratory infections, urinary tract infections, spasticity, pain, blood pressure, and pressure sores are common secondary conditions among the SCI population. As the leading causes of re-hospitalization and additional financial burden among individuals with SCI, secondary health conditions can also be disruptive to participation within one's life.…”

Section: Introductionmentioning

confidence: 99%

Problematic secondary health conditions among adults with spinal cord injury and its impact on social participation and daily life

Piatt

Nagata

Zahl

et al. 2015

The Journal of Spinal Cord Medicine

121

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Objective: This exploratory study describes the problematic secondary health conditions among adults with a spinal cord injury (SCI) and the impact these health concerns have on social participation and daily life. Design: Cross-sectional survey design. Setting: A community-based rehabilitation program within the United States. Participants: Fifty-six adults (33 males and 23 females; age 18 to 73 [M = 39.4, SD = 12.7]) with SCI participating in the community-based rehabilitation program. Methods: Subjects identified the top five problematic secondary health conditions related to his/her SCI, belief about the impact these conditions have on social participation and daily life, and if they believed the secondary health condition(s) were avoidable. Results: The top problematic areas identified were bladder control, pain, bowel control, and pressure ulcers, and 73% felt these problems were unavoidable. In addition, more than 66% had each of these problems continuously during the last 12 months. When examining the impact of the problematic secondary health conditions, 75% identified that the primary problem had a significant impact on social participation and 64% identified it significantly impacted daily life. Conclusion: Although the majority of the participants were actively participating in a community-based rehabilitation wellness program, it appears that they thought engagement in social participation and daily life were negatively impacted by the secondary health conditions and unavoidable. The results suggested unfulfilled goals despite the emphasized efforts of medical providers to help manage the secondary conditions. Future research should examine why individuals with SCI still have a difficult time managing secondary health conditions.

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“…A recent survey of B1000 Dutch individuals with SCI noted that a high percentage believed that certain physical complications were 'totally' preventable; this included 27% regarding bladder-related complications, 24% regarding bowel-related complications and 53% regarding PUs. 43 Moreover, the most important preventive mechanisms identified in this SCI population were linked to the following: adherence to key self-management behaviors, ensuring that high quality of care was being accessed, and taking advantage of good information related to SCI complications.…”

Section: Influence Of Depression In Sci H Krueger Et Almentioning

confidence: 99%

The influence of depression on physical complications in spinal cord injury: behavioral mechanisms and health-care implications

et al. 2013

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Study Design: This study is a literature review and a proposed conceptual model. Objectives: The objective of this study is to develop a conceptual model to explore the relationship between the presence of depressive symptoms and secondary physical complications such as pressure ulcers, urinary tract infections and autonomic dysreflexia in spinal cord injury (SCI). Setting: Community setting for individuals with SCI. Methods: A conceptual model explaining the mechanism underlying the relationship between depression and secondary physical SCI complications was developed based on the International Classification of Functioning, Disability and Health (ICF). A literature review was conducted to develop the model and to identify potential mechanisms responsible for the association.Results: A conceptual model based on ICF was created, informed by the literature discussing the link between depression and secondary physical SCI complications. Evidence in the literature was located that supports both a causal connection between depression and increased physical complications and/or the potential mechanisms mediating that connection. Conclusion: The proposed model can be utilized to encourage further research on the influence of depression on SCI outcomes and the importance of prompt and effective identification and treatment of depressive symptoms. Additional research is needed to assess the relationship between depression and secondary physical SCI complications, and to test the validity of the model.

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Care needs of persons with long-term spinal cord injury living at home in the Netherlands

Cited by 76 publications

References 19 publications

Caregiving services in spinal cord injury: a systematic review of the literature

Caregiving services in spinal cord injury: a systematic review of the literature

Problematic secondary health conditions among adults with spinal cord injury and its impact on social participation and daily life

The influence of depression on physical complications in spinal cord injury: behavioral mechanisms and health-care implications

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