The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review

Abstract

SCI impacts significantly on the QOL of family caregivers, with major implications for physical, mental and social aspects of caregiver health. This review highlights that these important issues are problematic internationally and may persist over several decades. The need for focused interventions to support family caregivers of spinal cord injured persons, with particular emphasis on increasing patient/family education and access to support groups, is recommended.

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

“…Fourthly, no data were available about other determinants of burden, mental health and life satisfaction. Most consistent determinants of these constructs are patients behavioural problems, quality of the relationship between patient and partner [2], caregiver coping [19,46], personality traits (resilience [55], neuroticism, self-efficacy), and caregiver competencies [21]. In future research, these determinants should be taken into account in order to get a more complete insight.…”

“…Acquiring a spinal cord injury (SCI) not only has a major impact on the people with SCI themselves [1], but also heavily affects the lives of their partners (often referred as spouses or significant others). They also have to adapt their pre-injury lifestyle and get a dual role as partner and caregiver, often without sufficient preparation [2,3].…”

“…Increased hours of care, more moderate or severe disabilities of the patient, residence with the patient, lack of choice in being a caregiver, providing more ADL support and social isolation are related to higher perceived burden [5,[10][11][12]. Higher perceived burden has consequences for the caregiving partner in terms of lower general health [13], lower participation [9,14], lower well-being, loss of identity or burnout [2,[15][16][17], but also for the individual with SCI, e.g., negative effect on the quality of their relationship [17] and society, e.g., financial consequences due to lostproductivity, absenteeism and burnout [18].…”

Efficacy of Internet-Delivered Mindfulness for Improving Depression in Caregivers of People With Spinal Cord Injuries and Chronic Neuropathic Pain: A Randomized Controlled Feasibility Trial

“…Caregiver burden and distress is demonstrated in many populations living with neurological conditions such as spinal cord injury (SCI) 1 . Evidence suggests that chronic pain affects 60% of people with SCI 2 , impeding physical function 3 , quality of life 4 and engagement in daily activities like work 5 .…”

“…By extension, this is likely to complicate care needs and dependence on caregivers. The unique nature of caregiving required after SCI, and additional complications like pain, may induce distress in those providing care 6 , often to a greater degree compared with care recipients 1 , highlighting the need to consider caregiver wellbeing alongside that of those with SCI.…”