Measuring quality and level of care provided by family caregivers of persons with dementia: protocol for a systematic review of validated instruments

Afeez Abiola Hazzan; Joyce O Hazzan; Mark Oremus; Afeez Abiola Hazzan; Joyce O Hazzan; Mark Oremus

doi:10.3934/publichealth.2021016

AIMS Public Health

2021, Volume 8, Issue 2: 206-212. doi: 10.3934/publichealth.2021016

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Protocol

Measuring quality and level of care provided by family caregivers of persons with dementia: protocol for a systematic review of validated instruments

1.
Department of Healthcare Studies, the College at Brockport, State University of New York, 350 New Campus Drive, Brockport, New York, 14420, USA
2.
School of Business, Liberty University, 1971 University Blvd., Lynchburg, VA, 24515, USA
3.
School of Public Health and Health Systems, University of Waterloo, 200 University Avenue West, Waterloo, ON, N2L3G1, Canada

Received: 14 November 2020 Accepted: 24 February 2021 Published: 01 March 2021

Background
Changes in the quality-of-life (QoL) of family caregivers as they care for their loved ones with dementia over time may affect the quality or level of care that these caregivers provide. We do not know if validated instruments exist to directly measure this quality or level of care. The purpose of this systematic review is to identify validated instruments for measuring the quality or level of care provided by family caregivers of persons with dementia.

Methods
We will include articles containing a validated instrument or questionnaire designed to measure quality or level of care provided by the aforementioned group of caregivers. The included articles may utilize the tools in primary or secondary data analyses, or evaluate the tools' psychometric properties. The following electronic databases will be searched from inception date to the present: Medline, CINAHL Complete, Cochrane Central, and PsycINFO. We will also search the gray literature, the reference lists of included articles, and contact experts in the field to help identify relevant instruments. Included articles will be required to report on an instrument measuring at least one of the following outcomes: quality of care, level of care, appropriateness of care, amount of time spent providing care, and caregiver performance. Two reviewers will independently screen retrieved citations, extract data, and assess the methodological quality of each included article. A narrative synthesis method will be used to describe the findings.

Discussion
Results of this systematic review will show whether validated instruments exist to measure the quality or level of care provided by family caregivers of persons living with dementia. This will make it possible to develop initiatives that are targeted towards improving the quality or level of care provided by family caregivers.
- aging,
- family caregiving,
- dementia,
- Alzheimer's disease,
- quality of care,
- level of care,
- population health
Citation: Afeez Abiola Hazzan, Joyce O Hazzan, Mark Oremus. Measuring quality and level of care provided by family caregivers of persons with dementia: protocol for a systematic review of validated instruments[J]. AIMS Public Health, 2021, 8(2): 206-212. doi: 10.3934/publichealth.2021016

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Abstract

Background

Changes in the quality-of-life (QoL) of family caregivers as they care for their loved ones with dementia over time may affect the quality or level of care that these caregivers provide. We do not know if validated instruments exist to directly measure this quality or level of care. The purpose of this systematic review is to identify validated instruments for measuring the quality or level of care provided by family caregivers of persons with dementia.

Methods

We will include articles containing a validated instrument or questionnaire designed to measure quality or level of care provided by the aforementioned group of caregivers. The included articles may utilize the tools in primary or secondary data analyses, or evaluate the tools' psychometric properties. The following electronic databases will be searched from inception date to the present: Medline, CINAHL Complete, Cochrane Central, and PsycINFO. We will also search the gray literature, the reference lists of included articles, and contact experts in the field to help identify relevant instruments. Included articles will be required to report on an instrument measuring at least one of the following outcomes: quality of care, level of care, appropriateness of care, amount of time spent providing care, and caregiver performance. Two reviewers will independently screen retrieved citations, extract data, and assess the methodological quality of each included article. A narrative synthesis method will be used to describe the findings.

Discussion

Results of this systematic review will show whether validated instruments exist to measure the quality or level of care provided by family caregivers of persons living with dementia. This will make it possible to develop initiatives that are targeted towards improving the quality or level of care provided by family caregivers.

Acknowledgments

The authors wish to thank Jamia Williams for her help with the literature search strategy.

Funding

This review will be funded by the State University of New York (SUNY) at Brockport.

Author's contributions

AAH conceived the study and led the design and the writing of this manuscript. JH and MO contributed to the writing of this manuscript. All authors read and approved the final manuscript.

Conflict of interest

The authors declare no conflicts of interest.

References

[1]	World Health Organization. Global action plan on the public health response to dementia 2017–2025 (PDF) (2017) .Available from: https://www.who.int/mental_health/neurology/dementia/action_plan_2017_2025/en/.
[2]	Feinberg L, Reinhard SC, Houser A, et al. (2011) Valuing the invaluable: 2011 update, the growing contributions and costs of family caregiving. AARP Public Policy Inst 32: 2011.
[3]	Bouldin ED, Andresen E (2010) Caregiving Across the United States. Caregivers of persons with Alzheimer's disease or dementia in Connecticut, New Hampshire, New Jersey, New York, and Tennessee. Data from the 2010 Behavioral Risk Factor Surveillance System Seattle, Washington: University of Washington Department of Epidemiology.
[4]	Hazzan AA, Ploeg J, Shannon H, et al. (2013) Association between caregiver quality of life and the care provided to persons with Alzheimer's disease: protocol for a systematic review. Syst Rev 2: 1-5. doi: 10.1186/2046-4053-2-17
[5]	Hazzan AA, Shannon H, Ploeg J, et al. (2014) Association between Caregiver Quality-of-life and the Care Provided to Persons with Alzheimer's Disease: Systematic Review. Adv Alzheimers Dis 3: 44-53. doi: 10.4236/aad.2014.31006
[6]	Hazzan AA, Ploeg J, Shannon H, et al. (2015) Caregiver perceptions regarding the measurement of level and quality of care in Alzheimer's disease. BMC Nurs 14: 54. doi: 10.1186/s12912-015-0104-8
[7]	Hazzan AA, Shannon H, Ploeg J, et al. (2016) The association between caregiver well-being and care provided to persons with Alzheimer's disease and related disorders. BMC Res Notes 9: 344. doi: 10.1186/s13104-016-2150-z
[8]	Greenberg NE, Wallick A, Brown LM (2020) Impact of COVID-19 pandemic restrictions on community-dwelling caregivers and persons with dementia. Psychol Trauma Theory Res Pract Policy 12: S220-S221. doi: 10.1037/tra0000793
[9]	Cohen G, Russo MJ, Campos JA (2020) Living with dementia: Increase level of caregiver stress in times of COVID-19. Int Psychogeriatr 1-11.
[10]	Moher D, Liberati A, Tetzlaff J, et al. (2010) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Int J Surg 8: 336-341. doi: 10.1016/j.ijsu.2010.02.007
[11]	Aromataris E, Riitano D (2014) Constructing a search strategy and searching for evidence. A guide to the literature search for a systematic review. Am J Nurs 114: 49-56. doi: 10.1097/01.NAJ.0000446779.99522.f6
[12]	Moher D, Shamseer L, Clarke M, et al. (2015) Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Syst Rev 4: 1. doi: 10.1186/2046-4053-4-1
[13]	Shamseer L, Moher D, Clarke M, et al. (2015) Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015: elaboration and explanation. BMJ Clin Res 350.
[14]	Gitlin LN, Winter L, Corcoran M, et al. (2003) Effects of the home environmental skill-building program on the caregiver-care recipient dyad: 6-month outcomes from the Philadelphia REACH Initiative. Gerontologist 43: 532-546. doi: 10.1093/geront/43.4.532
[15]	Deeken JF, Taylor KL, Mangan P, et al. (2003) Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. J Pain Symptom Manage 26: 922-953. doi: 10.1016/S0885-3924(03)00327-0
[16]	Hazzan AA, Follansbee P, Dauenhauer J, et al. (2020) Relationship between family caregiver quality of life and the care provided to people living with dementia: protocol for a mixed methods study. AIMS Public Health 7: 301-305. doi: 10.3934/publichealth.2020025
[17]	Moore L, Lavoie A, Bourgeois G, et al. (2015) Donabedian's structure-process-outcome quality of care model: Validation in an integrated trauma system. J Trauma Acute Care Surg 78: 1168-1175. doi: 10.1097/TA.0000000000000663
[18]	Donabedian A (1988) The quality of care. How can it be assessed? JAMA 260: 1743-1748. doi: 10.1001/jama.1988.03410120089033
[19]	Higgins JP, Altman DG, Gøtzsche PC, et al. (2011) Cochrane Bias Methods Group, Cochrane Statistical Methods Group: The Cochrane Collaboration's tool for assessing risk of bias in randomised trials. BMJ 343: d5928. doi: 10.1136/bmj.d5928
[20]	Cochrane Effective Practice and Organisation of Care Group Draft Risk of Bias Tool. Oxford, UK :Wiley. (2011) Available from: http://epoccochrane.org/epocresources-review-authors.
[21]	Hartling L, Bond K, Harvey K, et al. (2010) Developing and Testing a Tool for the Classification of Study Designs in Systematic Reviews of Interventions and Exposures. A Healthcare Res Qual .
[22]	Wells G, Shea BJ, O'Connell D, et al. The Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomized studies in meta-analyses (2011) .Available from: http://www.ohri.ca/programs/clinical_epidemiology/oxford.asp.
[23]	Mokkink LB, Terwee CB, Patrick DL, et al. (2010) The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res 19: 539-549. doi: 10.1007/s11136-010-9606-8
[24]	Mokkink LB, Terwee CB, Patrick DL, et al. (2010) The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol 63: 737-745. doi: 10.1016/j.jclinepi.2010.02.006

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