Study design: Cross-sectional survey.
Objectives: (1) To describe the support given to persons with spinal cord injuries (SCI) by their partners, (2) to describe the perceived burden of support by partners and (3) to examine predictors of perceived burden of support.
Setting: The Netherlands.
Methods: All members of the Dutch patients organisation DON (N = 1004) and their caregivers, if applicable, were invited. Physical disability of the person with SCI was measured using the Barthel Index (BI). A number of secondary conditions, other practical problems and psychosocial problems were recorded. Partner support was described using a list of ADL-support, other practical support and emotional support. Burden of support was measured by a six-item measure (Cronbach's alpha 0.92), Nonparametric descriptive statistics and correlations were used. Linear regression was used to identify predictors of caregiver burden.
Results: Responses were obtained from 461 persons with SCI. Of 265 couples, patient as well as partner data were available. Mean age of the partners was 49.4 years (SD 12.2) and 69.8% were women. Mean BI of the persons with SCI was 12.3 (SD 4.7) on a 0-20 scale and 60.4% were seriously disabled (BI < 15). Most partners provided various kinds of support. ADL-support and other practical support were given much more often by partners of persons with serious disability, but less difference was seen regarding emotional support. Professional (paid) support was obtained by 45.3% of all couples. Perceived burden of support was high in 24.8% of partners of persons with serious disabilities against 3.9% of partners of persons with minor disabilities. Significant predictors of caregiver burden were (in order of importance) the amount of ADL support given, psychological problems of the patient, partner age, partner gender, BI score and time after injury (total explained variance 47%).
Conclusion: A substantial proportion of partners of persons with SCI suffer from serious burden of support. Prevention of caregiver burnout should be part of the lifelong care for persons with SCI.