December 18, 2007
Systematic Review Title
Centre Conducting Review
Indiana Center for Evidence Based Nursing Practice
Purdue University Calumet, Indiana
United States of America
Family members and significant others find themselves in the role of caregiver for a multitude of reasons. The demand for caregivers continues to rise worldwide as a result of an increasingly aged population, multiple co-morbidities, people who survive traumatic injuries and the results of the HIV/AIDS epidemic (WHO, 2007). Caregivers are also referred to as carers. Caregivers and carers provide care to family members or friends who are ill or disabled and typically need help with daily tasks (USDHHS, 2006).
While family members have always played a significant role in caring for other ill family members, changes that have occurred both culturally and medically have made the role of caregiver more difficult (Zarit, 2004). The role of being a caregiver can be demanding physically, psychologically, socially and financially. Caregiver burden or strain can result from the role of providing care to one or more individuals over a period of time (Kasuya, Polgar Bailey, & Takeuchi, 2000).
Caregiver burden was originally operationalized by Professor Steven Zarit of Pennsylvania State University in 1980. His tool, the Zarit Burden Interview (ZBI), is used world-wide (Yumiko, 2006). Many other caregiver burden tools exist which health care providers could potentially use to measure caregiver burden. Caregiver burden instruments often focus around the different disease processes of the person being cared for. There are numerous examples of how caregiver burden has been examined by how specific disease entities affect the caregiver. These include: examining caregiver burden that results from caring for an individual with a chronic physical illness (Lim & Zebrack, 2004); caring for the elderly (Stoltz, Uldén, & Willman, 2004); caring for those with cancer and in need of palliative care (Harding & Higginson, 2003); caring for people with dementia (Thompson, et al., 2007); and caring for those with psychiatric illness (Ostman & Hansson, 2004). Caregiver burden tools have been used in many countries and several caregiver burden tools have been translated into other languages (Brouwer, van Exel, & van Gorp, 2006; Lee, Friedmann, Picot, Thomas, & Kim, 2007; Wancata et al., 2005).
While caregiver burden screening tools exist, clinicians need to be encouraged to use these tools to screen caregivers of their patients. Although multiple systematic reviews have examined caregiver burden in reference to specific disease entities, to date no systematic review has examined the psychometric properties of caregiver burden screening tools. A systematic review will be undertaken to determine the reliability and validity of caregiver burden screening tools and the feasibility of their being used by clinicians. Reliability will be assessed by examining stability, internal consistency and equivalence of instruments. Statistical conclusion validity, internal validity, construct validity and external validity of instruments will be examined (Polit & Beck, 2008; Shadish, Cook, & Campbell, 2002). Feasibility regarding ease of use, length and appropriate language translation will also be examined. Clinicians are more likely to use screening tools that are psychometrically sound and are easy to use in their place of work.
The overall objective of this review is to quantitatively measure the psychometric properties and the feasibility of caregiver burden screening tools.
The more specific objectives are to:
Determine the reliability of tools that are used to screen for caregiver burden and strain.
Determine the validity of tools that are used to screen for caregiver burden and strain.
Determine the feasibility of tools that are used to screen for caregiver burden and strain.
Types of Studies
The quantitative component of the review will consider any randomized controlled trials undertaken in in-patient and out-patient settings. In the absence of RCTs, other research study designs, such as non-randomized or quasi-randomized controlled trials and before-and-after studies, will be considered for inclusion in a narrative summary to enable the identification of current best evidence regarding tools that screen for caregiver burden and strain. If there is insufficient empirical evidence, clinical studies, case control studies, longitudinal studies, cohort studies, descriptive studies, observational studies, prospective studies, case series, case reports and expert opinion/commentary pieces will be appraised and included in the review.
Types of Participants
The quantitative and narrative component of the review will consider studies that include children or adults providing care to other individuals.
Types of Interventions/Phenomena of Interest
The quantitative and narrative component of the review will consider studies that evaluate screening tools (i.e. the type of intervention) which measure caregiver burden and strain.
Types of Outcomes
The review will consider studies that include the following outcome measures: reliability, validity and feasibility.
Search Strategy for Identification of Studies
The comprehensive search strategy aims to find both published and unpublished studies from 1980–2007, published only in the English language. A three-step search strategy will be utilized in each component of the review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract and the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of identified reports and articles will be searched for additional studies.
The databases to be searched include:
The Cochrane Library
Health Source: Nursing/Academic Edition
Elsevier Science Direct
ISI Web of Science
TRIP (Turning Research Into Practice)
Centre for Reviews and Dissemination (CRD)
The search for unpublished studies will include:
Index to Theses
New York Academy of Medicine - Grey Literature Report
Liverpool Health Authority - Grey Literature Bulletin
AHRQ (Agency for Healthcare Research and Quality)
Theses Canada Portal
Clinical Medicine Netprints Collection
Geneva Foundation for Medication Education and Research
HTA: Health Technology Assessment
Institute for Health & Social Care Research (IHSCR)
National Library of Health (NLH)
The Open University
World Health Organization Library (WHOLIT)
Initial keywords to be used will include:
Caregiver burden, caregiver support, caregiver strain, caregiver stress, caregiving, carer, clinical assessment tools, screening tools, instrument, Brief Assessment Scale for Caregivers (BASC), Caregiver Assessment Scale (CAS), Caregiver Quality of Life Index, Experience of Caregiving Inventory, Family Burden Inventory Scale, General Health Questionnaire (GHQ), Neo Five-Factor Inventory, Perceived Burden Scale (PBS), Perceived Caregiver Burden (PCB), Perceived Family Burden Scale (PFBS), Rapid Screen for Caregiver Burden, Relative Stress Scale (RSS), Subjective and Objective Family Burden Interview, Subjective Burden Scale (SCB), and Zarit Caregiver Burden Interview (ZBI).
Example of CINAHL Search:
- Explode caregiver burden
- Explode caregiver support
- Keyword caregiver strain
- Explode clinical assessment tools
- Explode instrument
- Keywords brief assessment scale for caregivers OR caregiver assessment scale OR caregiver quality of life index OR experience of caregiving inventory OR family burden inventory scale OR general health questionnaire OR neo five-factor inventory OR perceived burden scale OR perceived caregiver burden OR perceived family burden scale OR rapid screen for caregiver burden OR relative stress scale OR subjective and objective family burden interview OR subjective burden scale OR zarit caregiver burden interview
- Combine 1 or 2 or 3
- Combine 4 or 5 or 6
- Combine 7 and 8
- Keywords Valid$ or Reliab$
- Combine 1 and 6 and 10
Methods of the Review
Assessment of Methodological Quality
Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using two standardized critical appraisal instruments. The Joanna Briggs Institute Critical Appraisal Checklist for Experimental Studies (Appendix A) and the Joanna Briggs Institute Critical Appraisal Checklist for Interpretive & Critical Research (Appendix C) will be used. Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.
Data will be extracted from papers included in the review using standardized data extraction tools. The Joanna Briggs Institute Data Extraction Form for Experimental/Observational Studies (Appendix B) and the Joanna Briggs Institute Data Extraction Form for Interpretive & Critical Research (Appendix D) will be used.
Data extracted from experimental/observational studies will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives. Data extracted from interpretive and critical research will include specific details about the type of text, representation, position, setting, geographical and cultural information, the logic of the argument and the type of data analysis used to determine conclusions and credibility of evidence.
Quantitative papers will, where possible, be pooled in statistical meta-analysis using the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instruments (JBIMAStARI). All results will be subject to double data entry. Odds ratio (for categorical data) and weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed using the standard Chi-square. Where statistical pooling is not possible the findings will be presented in narrative form using the Joanna Briggs Institute Narrative, Opinion and Text Assessment Review Instruments (JBI-NOTARI).
Potential Conflict(s) of Interest
No potential conflict of interest is anticipated.
Purdue University Calumet for support of the project.
Arai, Y. (2006). Family caregiver burden and quality of home care in the context of the Long-Term Care insurance scheme: An overview. Psychogeriatrics, 6
Brouwer, W.B., van Exel, N.J., vanGorp, B. & Redekop, W.K. (2006). The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15
Friedmann, L., Picot S.J., Thomas, S.A., & Kim, C.J. (2007). Korean version of the revised caregiving scale: A translation and validation study. Journal of Advanced Nursing, 59
Harding, R., & Higginson, I.J. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 17
Kasuya, R., Polgar-Bailey, P., & Takeuchi, R. (2000). Caregiver burden and burnout. Postgraduate Medicine, 108
(7). Retrieved October 24, 2007, from http://www.postgradmed.com/issues/2000/12_00/kasuya.htm
Lim, J., & Zebrack, B. (2004). Caring for family members with chronic physical illness: A critical review of caregiver literature. Health and Quality of Life Outcomes, 2
. Retrieved October 24, 2007, from http://www.hqlo.com/content/2/1/50
National Women's Health Information Center, U.S. Department of Health and Human Services, (n.d.). Caregiver Stress Frequently Asked Questions. Retrieved October 22, 2007, from http://www.4women.gov/faq/caregiver.htm
Otman, M., & Hansson, L. (2004). Appraisal of caregiving, burden and psychological distress in relatives of psychiatric inpatients. European Psychiatry
Polit, D. F., & Beck, C. T. (2008). Nursing Research: Generating and Assessing Evidence for Nursing Practice.
Hagerstown, Maryland: Lippincott, Williams & Wilkins.
Shadish, W.R., Cook, T.D., & Campbell, D.T. (2002). Experimental and Quasi-Experimental Designs for Generalized Causal Inference.
Stola, P., Uden, G., & Willman, A. (2004). Support for family carers who care for an elderly person at home - a systematic literature review. Scandinavian Journal of Caring Sciences, 18
Thompson, C.A., Spilsbury, K., Hall, J., Birks, Y., Barnes, C., & Adamson, J. (2007). Systematic review of information and support interventions for caregivers of people with dementia. BMC Geriatrics, 7
(18). Retrieved October 22, 2007, from http://www.biomedcentral.com/1471-2318/7/18/
Uwakwe, R., & Modebe, I. (2007). Disability and care-giving in old age in a Nigerian community. Nigerian Journal of Clinical Practice, 10(1)
Wancata, J., Krautgartner, M., Berner, J., Alexandrowicz, R., Unger, A., Kaiser, G., Marquart, B. & Weiss, M. (2005). The carers’ needs assessment for dementia (cna-d): Development, validity and reliability. International Psychogeriatrics, 17
World Health Organization (n.d.). Ethical issues in long-term care. Retrieved October 23, 2007, from http://www.who.int/ethics/topics/longtermcare/en/
Zarit, S. (2004). Family care and burden at the end of life. CMAJ, 170
(12). Retrieved October 22, 2007, from http://www.cmaj.ca/cgi/content/full/170/12/1811