Nursing Research: Principle and Methods (7thedn)

Caring for a person with Parkinson’s disease (PD) extends far beyond the ordinary exchange of assistance among people in a close relationship. Caregivers must learn to cope with the patient’s increasing disability and loss of independence. The aim of this systematic review was to critically assess and summarize the evidence of the influence of the demographic and clinical characteristics of patients with PD on caregiver burden by means of a caregiver burden instrument. In order to identify articles, electronic databases and reference lists were searched using the search word “Parkinson’s disease” in combination with “caregiver” or “carer” and with “burden” or “distress” or “stress” or “strain”. Thirty one articles were deemed eligible for inclusion. The methodological quality of the studies was evaluated. No studies were excluded due to low quality. The results revealed similar associations among caregiver burden, demographic variables and patient characteristics, across different caregiver burden instruments and various clinical scales. Higher PD stage and functional disability are the non-motor characteristics that contribute the most to caregiver burden. However, when comparing the impact of patient motor and non-motor symptoms, several studies found that mental symptoms had a stronger impact on caregiver burden than motor symptoms. No association was observed between caregiver burden and patient and caregiver demographics with the exception of the sub-scale analysis of caregiver burden in various age groups. Interpreting the results of studies that employ a range of different clinical assessment scales and burden instruments makes it challenging to provide a valid summary of caregiver burden in PD. The most commonly used analysis methods contribute little information about burden variation across caregiver groups or which areas are the most burdensome for caregivers. There is a need for a more uniform use of recommended instruments and for longitudinal studies.