Abstract
BackgroundCerebral palsy (CP) is the most common, life-long paediatric disability. Taking care of a child with CP often results in caregiver burden/strain in the long run. As caregivers play an essential role in the rehabilitation of these children, it is therefore important to routinely screen for health outcomes in informal caregivers. Consequently, a plethora of caregiver burden outcome measures have been developed; however, there is a dearth of evidence of the most psychometrically sound tools. Therefore, the broad objective of this systematic review is to evaluate the psychometrical properties and clinical utility of tools used to measure caregiver burden in caregivers of children with CP.Methods/designThis is a systematic review for the evaluation of the psychometric properties of caregiver burden outcome tools. Two independent and blinded reviewers will search articles on PubMed, Scopus, Web of Science, CINAHL, PsychINFO and Africa-Wide Google Scholar. Information will be analysed using predefined criteria. Thereafter, three independent reviewers will then screen the retrieved articles. The methodological quality of studies on the development and validation of the identified tools will be evaluated using the four point COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. Finally, the psychometric properties of the tools which were developed and validated from methodological sound studies will then be analysed using predefined criteria.DiscussionThe proposed systematic review will give an extensive review of the psychometrical properties of tools used to measure caregiver burden in caregivers of children with CP. We hope to identify tools that can be used to accurately screen for caregiver burden both in clinical setting and for research purposes.Systematic review registrationPROSPERO CRD42015028026.
Highlights
The proposed systematic review will give an extensive review of the psychometrical properties of tools used to measure caregiver burden in caregivers of children with Cerebral palsy (CP)
Provision of care for a child with a long-term health condition is often associated with negative health outcomes in caregivers, for instance, depression, stress, anxiety and low self-efficacy were reported in caregivers [1,2,3,4,5,6]
Due to its diverse and complex presentation, CP is envisaged as the prototype paediatric disability [7, 8]
Summary
We hope to identify the most psychometrically sound, caregiver burden outcome measures. This is important given a plethora of tools which have been developed to measure this multidimensional construct. This is especially important for clinical use as there is a great need to routinely screen of caregivers at risk or who are exhibiting signs of strain/distress. Identification and use of caregiver burden outcomes with rigorous psychometrical properties will enhance the credibility, methodological rigour and overall external validity and comparability of interventions for improving caregiver burden
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