Caregiving, Participation, and Quality of Life of Closest Next of Kin of Persons Living with Spinal Cord Injury in Norway

Abstract

Objectives: To investigate how next of kin of persons with spinal cord injury (SCI) experience various life areas in terms of caregiving, participation, and quality of life (QoL), and the impact of personal characteristics of next of kin and SCI characteristics.
 Design: Survey among next of kin linked to data on persons with SCI in the Norwegian SCI Registry.
 Participants: Seventy-three next of kin identified by a person with SCI.
 Methods: The outcome measures were caregiving (4 measures), participation (1 measure), and QoL (2 measures).
 Results: The participants (73% partners, 73% female, mean age 56.4 years) gave various support to the person with SCI and found it important to care and were happy to do so. Three out of four reported good mental health and life satisfaction, while one-fourth reported high levels of caregiver strain, especially related to emotional adjustments. Higher levels of caregiver strain were reported by participants of working age (<67 years), and by those with middle level education.
 Conclusion: The majority of next of kin of persons living with SCI in Norway are doing well in most life areas. Caregiver strain may be reduced by strengthening the ability of next of kin to cope with emotional challenges.

Psychometric properties of the Danish version of the Caregiver Burden Scale: Investigating predictors and severity of burden after stroke, spinal cord injury, or traumatic brain injury

“…On the Emotional Involvement subscale, we found that female caregivers reported higher levels of burden. This has also been reported in an SCI group previously ( 2 ), but the opposite pattern has also been reported among stroke caregivers, where males reported higher burden ( 41 ). But as already mentioned, most studies have found no association between gender and burden ( 23 , 32 , 35 , 38 , 42 , 43 ).…”

“…A fter a neurological condition such as stroke, spinal cord injury (SCI), or traumatic brain injury (TBI), life is dramatically disrupted for the person concerned and their family members (1)(2)(3). Most of these individuals experience short and long-term physical, emotional, and cognitive sequelae that cause them to require some level of assistance to do everyday activities.…”

Caregivers’ Knowledge, Attitude, and Practice towards Pressure Injuries in Spinal Cord Injury at Rehabilitation Center in Bangladesh

“…Relatives (kins/cousins) were also found to be primary caregivers, and the spouses of male SCI people, as well as the mothers of female SCI individuals, were primarily active in caretaking among family members, if the individual was married. A study on various aspects of caregivers' lives showed age and educational status have a significant relationship among them [ 26 ]. In contrast, caregivers' educational attainment varied considerably in terms of proportions at the higher education level [ 33 ].…”

“…It has been demonstrated that spouses of individuals with SCI who express a positive attitude towards caring have improved emotional wellbeing. Additional studies on the positive features of caring are thus necessary in the future [ 26 ].…”

“…A large number of studies on caregiving have focused on psychological consequences, social integration, caring duties, interpersonal relationships, etc., and KAP have received less attention [ 13 , 14 ]. Furthermore, having appropriate KAP among caregivers may provide assistance in reducing economic expenses and health care needs [ 26 ]. The objective of this study was to determine the knowledge, attitude, and practice (KAP) of caregivers regarding the prevention and care of PIs in SCI individuals in order to identify areas that require special care.…”