Health-related quality of life of primary caregivers of persons with paraplegia

Abstract

Study Design: A cross-sectional descriptive study was performed with structured questionnaires and interviews conducted with 60 primary caregivers of persons with paraplegia (T1 to S2) owing to traumatic spinal cord injury (SCI). Objectives: The purpose of this study was the assessment of the health-related quality of life (HRQoL) of primary caregivers of persons with paraplegia owing to traumatic SCI. Setting: Sa˜o Paulo, SP, Brazil. Methods: The HRQoL was assessed by the Short Form-36 (SF-36) health survey questionnaire and caregiver burden was evaluated by the Caregiver Burden Scale (CBS). Results: Among 60 caregivers evaluated, 49 (81.7%) were female, with mean age of 35.8 (SD ¼ 12.91) years, 16 (26.6%) being wives and 14 (23.4%) sisters of persons with paraplegia. It was found that the caregivers spend an average of 11.3 h/day caring for individuals with paraplegia. Twenty-three caregivers (38.3%) had a chronic disease and 32 (53.3%) were sole caregivers taking upon themselves the full responsibility of caring for the persons with paraplegia. The subjects reported lower scores on bodily pain and vitality than the other dimensions of the SF-36. The mean global CBS score was 1.71 (SD ¼ 0.50) and mean scores for each dimension ranged from 1.39 (SD ¼ 0.64) for emotional involvement to 2.44 (SD ¼ 0.79) for environment dimension. Conclusion: The primary caregivers of spinal cord-injured persons reported low scores on all of the SF-36 and CBS dimensions, bodily pain and vitality being the SF-36 dimensions that received the lowest scores. Sponsorship: Funding was provided by the Brazilian research agency CAPES.

Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji

“…Inaccessible physical environment contributing to caregiver burden has been reported in other studies. 25,26 Blanes et al 26 found their sample of caregivers reported much higher on the environment dimension of the Caregiver Burden Scale, suggesting that the caregivers were more burdened by lack impact and the burden of caregiving P Gajraj-Singh of accessible environment, which they perceived as limiting the independence of the SCI persons. Higher household income has been reported to be associated with lower timedependent burden.…”

“…Assistance of other family members' towards caregiving chores has been reported in minority ethnic groups and other cultures. 4,12,26,27 Although paid care support is a common feature in Western countries, 19,28 it is almost non-existent in a developing country like Fiji. Thus, the gap in the continuation of care is most likely filled by others present around these individuals.…”

Burden and quality of life among caregivers of children and adolescents with meningomyelocele: measuring the relationship to anxiety and depression

“…Mothers are predominant as the primary caregivers of children with cerebral palsy. 6 Blanes et al 7 found that 81.7% of caregivers of paraplegic patients were women (including mothers, wives and daughters). About 90% of the caregivers of persons with chronic diseases are their relatives.…”

“…Other authors also emphasize that environmental changes have already been achieved in Brazil for people with disabilities, but reduced public transportation access and buildings and sidewalks without wheelchair ramps represent a problem that may affect people with special needs and their caregivers. 7 Depressive state was frequent. Family caregivers also have a deep interpersonal contact with their relatives for a long time, which might result in emotional exhaustion and burden.…”

Qualidade de vida de cuidadores familiares de adultos com lesão medular: uma revisão sistemática

“…Com relação ao desenho dos estudos, cinco (71,43%) foram do tipo transversal e apenas dois (28,57%) longitudinal observacional, sendo um com entrevistas após um, três e seis meses de re- 14 18,00 81,82 Nogueira et al, 2012 5 14,50 65,91 Graça et al, 2013 9 17,00 77,27 Ebrahimzadeh et al, 2013 15 17,00 77,27 Middleton et al, 2014 16 20,00 90,91 abilitação ambulatorial 13 e outro por um período maior de acompanhamento, com entrevistas seis semanas antes da alta da reabilitação na internação e seis semanas, um ano e dois anos pós-alta 16 . Dois estudos (28,57%) tinham grupo controle 9,12 9,15 , nos outros, a porcentagem de mulheres variou de 81% a 90%, sendo em sua maior parte esposas, seguido de irmãs ou mães, variando a proporção entre os estudos.…”