Measures used to assess impact of providing care among informal caregivers of persons with stroke, spinal cord injury, or amputation: a systematic review

Abstract

Purpose

(1) To identify measures used to evaluate the impact of caregiving among caregivers of persons with stroke, spinal cord injury, and amputation; and (2) to systematically evaluate their clinimetric properties reported in validation studies.

Materials and methods

Two separate systematic reviews (Embase, PsycINFO, CINAHL, Pubmed/Medline) were conducted. COSMIN guidelines were used to assess clinimetric properties and methodological quality of studies.

Results

(1) 154 studies published between 2008 and May 2019 were included, in which 48 measures were used, mostly describing negative impact. Thirty measures were used only once and not further described. (2) In general, structural validity, internal consistency, and hypothesis testing were often investigated. Reliability, cross-cultural and criterion validity to a lesser extent, and scale development and content validity were rarely described. Tests of measurement error and responsiveness were exceptional. Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire.

Conclusions

There is a wide variety of impact of caregiving measures. The present study provided a detailed overview of what is known about clinimetric characteristics of 18 different measures repeatedly used in research. The overview provides clinicians a guidance of appropriate measure selection.

PROSPERO registration

CRD42018094796

IMPLICATIONS FOR REHABILITATION

• Clinicians should be aware that information about measure development and clinimetric properties for most measures used to assess impact of informal caregiving is incomplete.

• Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire.

• This overview of clinimetric properties provides clinicians guidance for selection of an appropriate measure.

Keywords:

• Caregiving impact
• stroke
• spinal cord injury
• amputation
• clinimetric
• measures

Acknowledgements

The authors thank information specialist Drs Paulien Wiersma, Utrecht University Library, for her help in the initial design of the search strategy.

Disclosure statement

The authors report no conflicts of interest.

Ethical approval

We certify that we followed all applicable institutional and governmental regulations concerning the ethical use of human volunteers during the course of this research.

Additional information

Funding

The review is part of the POWER-study (Dutch trial register: NTR5742). The POWER-study is financially supported by ZonMw, The Netherlands Organization for Health Research and Development, Fonds Nuts Ohra, and Revalidatiefonds, grant number [630000003]. Funding organizations are not involved in the design of the study.