Sources of stress in family members following head or spinal cord injury

1994 ◽  
Vol 1 (1-2) ◽  
pp. 57-62 ◽  
Author(s):  
D.P. Alfano ◽  
P.M. Neilson ◽  
M.P. Fink
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Family Members ◽  
Cord Injury

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.

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 The experiences of individuals with cervical spinal cord injury and their family during post-injury care in non-specialised and specialised units in UK

2020 ◽  
Author(s):  
Jackie McRae ◽  
Christina Smith ◽  
Anton Emmanuel ◽  
Suzanne Beeke
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Cervical Spinal Cord ◽  
Family Members ◽  
Cervical Spinal Cord Injury ◽  
Specialist Care ◽  
Structured Interviews ◽  
Post Injury ◽  
Experience Of Care ◽  
Cord Injury

Abstract Background Individuals with acute cervical spinal cord injury require specialised interventions to ensure optimal clinical outcomes especially for respiratory, swallowing and communication impairments. This study explores the experiences of post-injury care for individuals with cervical spinal cord injury and their family members during admissions in specialised and non-specialised units in the United Kingdom.Methods Semi-structured interviews were undertaken with individuals with a cervical spinal cord injury and their family member, focussing on the experience of care across units. Eight people with spinal cord injury levels from C2 to C6, were interviewed in their current care settings. Six participants had family members present to support them. Interviews were audio-recorded and transcribed with data inputted into NVivo for thematic analysis.Results The study identified six themes from the participant interviews that highlighted different experiences of care in non-specialised and specialised settings. A number of these were related to challenges with the system, whilst others were about the personal journey of recovery. The themes were titled as: adjustment, transitions, “the golden opportunity”, “when you can’t eat”, communication, and “in the hands of the nurses and doctors”.Conclusions Whilst participants reported being well cared for in non-specialised units, they felt that they did not receive specialist care and this delayed their rehabilitation. Participants were dependent on healthcare professionals for information and care and at times lost hope for recovery. Staff in non-specialised units require training and guidance to help provide support for those with dysphagia and communication difficulties, as well as reassurance to patients and families whilst they wait for transfer to specialised units.

Sources of stress in family members following head or spinal cord injury

1994 ◽  
Vol 1 (1) ◽  
pp. 57-62 ◽  
Author(s):  
D. P. Alfano ◽  
P. M. Neilson ◽  
M. P. Fink
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Family Members ◽  
Cord Injury

scholarly journals The Experiences of Individuals With Cervical Spinal Cord Injury and Their Family During Post-injury Care in Non-Specialised and Specialised Units in UK

2020 ◽  
Author(s):  
Jackie McRae ◽  
Christina Smith ◽  
Anton Emmanuel ◽  
Suzanne Beeke
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Cervical Spinal Cord ◽  
Family Members ◽  
Cervical Spinal Cord Injury ◽  
Specialist Care ◽  
Structured Interviews ◽  
Post Injury ◽  
Experience Of Care ◽  
Cord Injury

Abstract BackgroundIndividuals with acute cervical spinal cord injury require specialised interventions to ensure optimal clinical outcomes especially for respiratory, swallowing and communication impairments. This study explores the experiences of post-injury care for individuals with cervical spinal cord injury and their family members during admissions in specialised and non-specialised units in the United Kingdom.MethodsSemi-structured interviews were undertaken with individuals with a cervical spinal cord injury and their family member, focussing on the experience of care across units. Eight people with spinal cord injury levels from C2 to C6, were interviewed in their current care settings. Six participants had family members present to support them. Interviews were audio-recorded and transcribed with data inputted into NVivo for thematic analysis.Results The study identified six themes from the participant interviews that highlighted different experiences of care in non-specialised and specialised settings. A number of these were related to challenges with the system, whilst others were about the personal journey of recovery. The themes were titled as: adjustment, transitions, “the golden opportunity”, “when you can’t eat”, communication, and “in the hands of the nurses and doctors”.ConclusionsWhilst participants reported being well cared for in non-specialised units, they felt that they did not receive specialist care and this delayed their rehabilitation. Participants were dependent on healthcare professionals for information and care and at times lost hope for recovery. Staff in non-specialised units require training and guidance to help provide support for those with dysphagia and communication difficulties, as well as reassurance to patients and families whilst they wait for transfer to specialised units.

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.

scholarly journals Loss of work-related income impoverishes people with SCI and their families in Bangladesh

Spinal Cord ◽  
2019 ◽  
Vol 58 (4) ◽  
pp. 423-429 ◽  
Author(s):  
Mohammad Sohrab Hossain ◽  
◽  
Lisa A. Harvey ◽  
Md. Shofiqul Islam ◽  
Md. Akhlasur Rahman ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Family Member ◽  
Rural Areas ◽  
Family Members ◽  
Median Income ◽  
Cross Sectional ◽  
Extreme Poverty ◽  
Work Related ◽  
Cord Injury

Abstract Study design Cross-sectional study. Objectives To determine the degree of impoverishment of people with spinal cord injury (SCI) and their families in Bangladesh caused by loss of work-related income following injury. Setting Spinal cord injury centre, Bangladesh. Methods A total of 410 wheelchair-dependent people with recent SCI about to be discharged from a hospital in Bangladesh were interviewed to determine the size of their families, their incomes from paid work prior to injury and the incomes of their family members. These data were used to calculate income per family unit and per family member prior to and immediately after injury. Results Ninety percent of the participants were men, 98% were from rural areas of Bangladesh and 58% were manual labours prior to injury. Median (interquartile range, IQR) family size was 5 (4–6) people. Prior to injury, 74% of participants were the main income earners for their families and 50% provided the only source of income for their families. Participants’ median (IQR) monthly income prior to injury was US$106 (US$60–US$180) per person and family members’ income was US$30 (US$19–US$48) per person. After injury, the median income (IQR) of each family member dropped to US$0 (US$0–US$18) placing 91% of families below the extreme poverty line of US$37.50 per person per month (equivalent to US$1.25 per day). Conclusion In Bangladesh, SCI have profound financial implications for individuals and their families and causes extreme poverty. This is because those most often injured are young and the main income earners for their families.

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