stress and burden in caregivers of...

Stress and Burden in Caregivers of Seniors Assessment Tools

August 2016

Table of Contents

Stress and Burden in Caregivers of Seniors: Assessment Tools ......................... 2 Background ....................................................................................................... 2

Toolkit Development....................................................................................... 2 Screening Assessments ................................................................................. 2 Follow-Up Assessment.................................................................................... 2

Caregiver Burden Inventory............................................................................... 3

Caregiver Reaction Assessment........................................................................ 4

Caregiver Risk Screen………………………………………………………………. 5

Caregiver Self-Assessment Questionnaire ....................................................... 6

Caregiver’s Burden Scale in End-of-Life Care................................................... 7

Carer Support Needs Assessment Tool…………………………………………… 8

Cost of Care Index ........................................................................................... 9

Modified Caregiver Strain Index........................................................................ 10

Screen for Caregiver Burden.......................................................................... 11

Social Support Questionnaire........................................................................... 12

Zarit Burden Interview....................................................................................... 13

The Caregivers’ Aspirations, Realities, and Expectations (CARE) Tool........... 14

Appendix ......................................................................................................... 15

General Notes .............................................................................................. 15 References...................................................................................................... 16

Stress and Burden in Caregivers of Seniors: Assessment Tools Background Canada’s population is aging and individuals aged 65 and over are anticipated to account for over 25% of the population by 2068 (Bohnert et al., 2015). Family and friends are often relied upon for support; they provide transportation (e.g. running errands, attending medical appointments), perform tasks in the care partner’s home (e.g., preparing meals, cleaning, laundry), assist with house maintenance, and offer emotional support, (e.g., spending time and talking with care partner; Sinha, 2012). The Health Council of Canada’s, “Seniors in Need, Caregivers in Distress” report (Kitts, 2012) notes the need to support informal caregivers and recognize their indispensable contribution in the sustainability of the health care system. Caregivers are at an increased risk of physical, emotional, and financial strain (Butler-Jones, 2010; Kitts, 2012; Sinah, 2012; Hollander et al., 2009; Canadian Institutes of Health, 2009) that can lead to deterioration of their health, social isolation, loss of income, and family conflict (Kitts, 2012; Stajduhar et al., 2010; Dumont et al., 2009). This strain is anticipated to intensify as a result of the aging population (Eales et al., 2015; Smetanin et al., 2010; Dudgeon, 2010).

Toolkit Development A systematic review of the literature was completed to locate assessments used to measure informal caregiver stress and/or burden. The results of the search were compiled into a table and evaluated based on tool accessibility, cost, domains measured, utility across caregiving (end of life, homecare), and psychometric properties (reliability and validity). Below is a list of the ten assessments chosen, based on these evaluation criteria, to assess caregiver stress and burden. The first nine are brief, self- (or clinician) assessment screens (presented in alphabetical order) and the tenth is a clinician led interview that can be used to determine needs and potential interventions for caregivers who are identified as being at increased risk of caregiver burnout.

Screening Assessments 1. Caregiver Burden Inventory2. Caregiver Reaction Assessment3. Caregiver Risk Screen4. Caregiver Self-Assessment Questionnaire5. Caregiver’s Burden Scale in End-of-Life Care6. Carer Support Needs Assessment Tool7. Cost of Care Index8. Modified Caregiver Strain Index9. Screen for Caregiver Burden

10. Social Support Questionnaire11. Zarit Burden Interview

Follow-Up Assessment The Caregivers’ Aspirations, Realities, and Expectations (CARE) Tool

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Caregiver Burden Inventory

Published 1989

Description Measures caregiver burden as it relates to time, developmental comparison with peers, physical health, social relationships, and emotional health. Can be used with informal caregivers of any sick or elderly person.

Domain assessed Social

Category Caregiving

Setting Clinical or Community

Method of Delivery Self-report (or clinician delivered) questionnaire

Time to Administer ~10 to 15 minutes

# Items 24-item scale with 5 point Likert (not at all disruptive to very disruptive)

Languages Available English and Chinese

Availability Available online

(http://gerontologist.oxfordjournals.org/content/29/6/798.full.pdf)

Scoring Yes; total score are summed, with a score greater than 36 indicating a risk of burning out and scores near 24 indicating a need to seek for respite care.

Training Required None

Reliability Acceptable to Good Internal Consistency for the five factors measures

Validity Construct validity

Reference Novak, M. & Guest, C. I. (1989). Application of a multidimensional Caregiver Burden Inventory. Gerontologist, 29, 798-803.

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http://gerontologist.oxfordjournals.org/content/29/6/798.full.pdf

Caregiver Reaction Assessment

Published 1992

Description Assesses caregiver burden, including caregiver esteem, lack of family support, impact on finances, impact on schedule, and impact on health. Can be used with informal caregivers of any sick or elderly person.

Domain assessed Psychological

Category Caregiving



Time to Administer ~ 15 to 20 minutes

# Items 24 items scored on 5 point Likert (strongly disagree to strongly agree)

Languages Available English, French, Dutch, and Chinese


(http://onlinelibrary.wiley.com/doi/10.1002/nur.4770150406/full)

Scoring Yes; Total score ranges from 24 (low strain) to 120 (high strain); information predicting outcomes not provided


Reliability Good to Excellent Internal Consistency for Total Scale

Validity Content Validity; Construct Validity

Reference Given, C.W., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing and Health, 15, 271–283.

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http://onlinelibrary.wiley.com/doi/10.1002/nur.4770150406/full

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Caregiver Risk Screen Published 2001

Description Primarily used as a risk screen for use by home care agencies at intake to determine if a caregiver is “at risk” and if so, the urgency of required intervention. Also has been used in hospitals to assess pre and post risk following caregiver intervention.

Domain assessed Risk

Category Caregiving

Setting Clinical or Home care


Time to Administer ~ 10 minutes

# Items 12 items with a 4 point Likert scale (totally disagree to totally agree)

Languages Available None listed

Availability Questions available online (http://onlinelibrary.wiley.com/doi/10.1002/gps.1707/abstract) in Huyck, M., H., Ayalon, L., & Yoder, J. (2007). Using mixed methods to evaluate the use of a carevier strain measure to assess outcomes of a caregiver support program for caregivers of older adults. International Journal of Geriatric Psychiatry, 22 160-165.

Scoring Sum items (maximum score of 36).

To interpret the score: Very high risk = 23-30; high risk = 17 – 22; moderate risk = 11-16; and below 11 = low risk. People who score a “3” on items 7, 10, and 11 should be considered high risk.


Reliability Good internal consistency

Validity Face and Criterion validity

Reference Guberman, N., Keefe, J., Fancey, P., Nahmiash, D., & Barylak, L. (2001). Caregiver risk screen.

http://onlinelibrary.wiley.com/doi/10.1002/gps.1707/abstract

Caregiver Self-Assessment Questionnaire

Published 1992

Description Assesses stress levels of family caregivers, including stress, health, socialization, sleep, and family strain. Can be used with informal caregivers of any sick or elderly person.

Domain assessed Health

Category Caregiving




# Items 18 items (16 items scored yes/no and 2 items scored 1 to 10)

Languages Available English, Spanish, and Greek


(http://www.healthinaging.org/resources/resource:caregiver-self-assessment/)

Scoring Yes; To determine the score: 1. Reverse score questions 5 and 15. For example, a “No” response should be counted as a “Yes” and a “Yes” response should be counted as a “No.” 2. Total the number of “yes” responses

To interpret the score: Experiencing a high degree of distress if any of these are true: (1) If answered “Yes” to either or both questions 4 and 11; (2) If total “Yes” scores = 10 or more; or (3) If score on questions 17 or 18 is 6 or higher;


Reliability Good Internal Consistency

Validity Convergent Validity

Reference American Medical Association. Caregiver Self-Assessment [on-line]. Available at http://www.healthinaging.org/resources/resource:caregiver-self-assessment/

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http://www.healthinaging.org/resources/resource:caregiver-self-assessment/

http://www.healthinaging.org/resources/resource:caregiver-self-assessment/

Caregiver’s Burden Scale in End-of-Life Care

Published 2008

Description Assesses family caregivers' burden within the palliative care context, including care demands, physical and emotional exhaustion, physical health, and control over own life. Can be used with informal caregivers of elderly person in end-of-life care.

Domain assessed Burden

Category Caregiving




# Items 16-item scale with 4 point Likert (never to very often)

Languages Available English and French

Availability Available online (http://www.ncbi.nlm.nih.gov/pubmed/18942565)

Scoring Total score ranges from 16 (low burden) to 64 (high burden)


Reliability Excellent Internal Consistency

Validity Convergent Validity with Zarit Burden Interview

Reference Dumont, S., Fillion, L., Gagnon, P., & Bernier, N. (2008). A new tool to assess family caregivers’ burden during end-of-life care. Journal of Palliative Care, 24, 151-161.

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http://www.ncbi.nlm.nih.gov/pubmed/18942565

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Carer Support Needs Assessment Tool (CSNAT) Published 2013

Description Developed from focus groups with bereaved carers to determine key aspects of support for carers in palliative home care. Fourteen broad domains of support are compiled into two groups reflecting the dual role of caregivers as coworker and co-client.

Domain assessed Burden and Health

Category Caregiving


Method of Delivery Self-report and clinician conversation

Time to Administer ~ 5 minutes to complete form plus added time for follow-up conversation

# Items 14-item scale with 4 point Likert (no to very much more) and one open endedquestion

Languages Available None listed (translations in Dutch, Italian, Danish, and German underway)

Availability Questions available online (https://www.ncbi.nlm.nih.gov/pubmed/26636891) in Ewing, G., Austin,L., Diffin, J., & Grande, G. (2015). Developing a person-centred approach to carer assessment and support. British Journal of Community Nursing, 20(12), 580-584.

Scoring Clinician has conversation with caregiver regarding the items they highlighted on the CSNAT to determine the types of supports they need (no total score)


Reliability Sensitivity to change

Validity Face, content, and criterion validity

Reference Ewing, G., & Grande, G. (2013). Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study. Palliative Medicine, 27(2), 244-256.

https://www.ncbi.nlm.nih.gov/pubmed/26636891

Cost of Care Index

Published 1986

Description Measures different aspects of burden, including personal and social restrictions, emotional health, worthiness of caregiving, relationship with care recipient, and economic costs. Can be used with informal caregivers of any sick or elderly person.


Category Caregiving




# Items 20-item scale with 4 point Likert (strongly agree to strongly disagree)

Languages Available None listed

Availability Available online (http://gerontologist.oxfordjournals.org/content/26/3/273.short)

Scoring Total score is summed to obtain global score ranging from 20 (low-cost) to 100 (high cost). Sub-scores can be used to identify specific problems in each domain; Personal and Social Restrictions (items 1-4), Physical and Emotional Health (items 5-8), Value (items 9-12), Care Recipient as Provocateur (items 13-16), and Economic Costs (items 17-20)


Reliability Excellent Internal Consistency


Reference Kosberg, J.I., & Cairl, R.E. (1986). The Cost of Care Index: A case management tool for screening informal caregivers. Gerontologist, 26, 273-278.

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http://gerontologist.oxfordjournals.org/content/26/3/273.short

Modified Caregiver Strain Index

Published 2003

Description Quick screen for caregiver strain for long-term family caregivers, including employment, financial, physical, social, and time strains. Can be used with informal caregivers of any sick or elderly person.

Domain assessed

Psychological and Social

Category Caregiver and Social Support

Setting Clinical

Method of Delivery

Self-report (or clinician delivered) questionnaire

Time to Administer

~ 5 to 10 minutes

# Items 13 item scale with 3 point Likert (on a regular basis to no)

Languages Available

English (none listed)


(http://psychsocgerontology.oxfordjournals.org/content/58/2/S127.full.pdf+html?sid=0c865ce2-d7d7-48fd-94b3-ad96de4a4111)

Scoring Yes; Total score ranges from 0 (low strain) to 26 (high strain). The higher the score on the MCSI, the greater the need for more in-depth assessment to facilitate appropriate intervention

Training Required

None

Reliability Excellent Internal Consistency and Good Test-Retest at 2-weeks


Reference Thornton, M., & Travis, S.S. (2003). Analysis of the reliability of the Modified Caregiver Strain Index. The Journal of Gerontology, Series B, Psychological Sciences and Social Sciences, 58(2), S129.

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http://psychsocgerontology.oxfordjournals.org/content/58/2/S127.full.pdf+html?sid=0c865ce2-d7d7-48fd-94b3-ad96de4a4111

http://psychsocgerontology.oxfordjournals.org/content/58/2/S127.full.pdf+html?sid=0c865ce2-d7d7-48fd-94b3-ad96de4a4111

Screen for Caregiver Burden

Published 1991

Description Assesses appraised distress in response to caregiver experiences, including objective burden (number of negative experiences) and subjective burden (distress associated with these experiences). Originally developed for use with informal caregivers of spouses with dementia.

Domain assessed Psychology

Category Caregiver




# Items 25-item scale with 5 point Likert (no occurrence to occurrence with severedistress)

Languages Available English and Spanish

Availability Available online:

(http://gerontologist.oxfordjournals.org/content/31/1/76.long)

Scoring Total score ranges from 25 (no distress) to 100 (high distress). No interpretations provided.


Reliability Good Internal Consistency; Adequate Test-Retest Reliability

Validity Construct Validity; Criterion Validity

Reference Vitaliano, P. P., Russo, J., Young, H. M., Becker, J., & Maiuro, R. D. (1991). The Screen for Caregiver Burden. Gerontologist, 31(1), 76-83.

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http://gerontologist.oxfordjournals.org/content/31/1/76.long

Social Support Questionnaire

Published 1983

Description Quantifies the availability of, and satisfaction with, social supports available to an individual.


Category Social Support




# Items 27-item with two part answer: 6 point Likert (very satisfied to very dissatisfied)and asked to list who they can rely on for each situational circumstance

Languages Available English

Availability Available online (http://psycnet.apa.org/journals/psp/44/1/127/)

Scoring Yes (available in above link); Total score ranges from 27 (high dissatisfaction) to 243 (high satisfaction). A support score is calculated for each item based on the number of individuals the participant lists


Reliability Excellent Internal Consistency; Excellent Test-Retest Reliability

Validity Criterion Validity

Reference Sarason, I.G., et al. (1983). Assessing social support: the Social Support Questionnaire. Journal of Personality and Social Psychology, 44, 127-139.

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http://psycnet.apa.org/journals/psp/44/1/127/

Zarit Burden Interview

Published 1980

Description Measures subjective burden among caregiver of adults with dementia, including functional/behavioural impairments and home care situation. Items are worded to focus on the affective response of the caregiver.

Domain assessed Psychological

Category Caregiver Burden




# Items 22-item scale with 5 point Likert (never to nearly always)

Languages Available English, French, Japanese, Chinese, Korean, Spanish, and Brazilian


(http://gerontologist.oxfordjournals.org/content/20/6/649.abstract)

Scoring Yes (at above link); total scores range from 0 (low burden) to 88 (high burden). Score values and interpretations are guidelines only; Interpretation of Score:

0 - 21 little or no burden21 - 40 mild to moderate burden 41 - 60 moderate to severe burden 61 - 88 severe burden


Reliability Excellent internal consistency; acceptable test-retest reliability


Reference Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist, 20(6), 649-655.

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http://gerontologist.oxfordjournals.org/content/20/6/649.abstract

Follow-Up AssessmentThe Caregivers’ Aspirations, Realities, and Expectations (CARE) Tool

Published 2001

Description For practitioners to systematically evaluate unmet needs of caregivers and shape interventions. Detailed assessment, consisting of 10 sections that cover different aspects of a caregiver’s situation and allows for the identification of 15 areas of difficulty experienced by the caregiver.

Domain assessed

Psychological and Social

Category Caregiving

Setting Clinical

Method of Delivery

Interview administered by healthcare professional

Time to Administer

Not given (~ 60+ minutes)

# Items Covers 15 areas of caregiving (over 100 questions)

Languages Available

English and French

Availability Available online:

(http://www.msvu.ca/en/home/research/centresandinstitutes/centreonaging/projects/caregiverassessment/instruments.aspx)

Scoring Practitioner uses information to identify key areas of difficulty and notes what types of services that would be most beneficial.

Training Required

Yes – informal

Reliability None available

Validity None available

Reference Keefe, J., Guberman, N., Fancey, P., Barylak, L., & Nahmiash, D. (2008). Caregivers’ Aspirations, Realities, and Expectations: The C.A.R.E. Tool. Journal of Applied Gerontology, 27(3), 286.

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http://www.msvu.ca/en/home/research/centresandinstitutes/centreonaging/projects/caregiverassessment/instruments.aspx

http://www.msvu.ca/en/home/research/centresandinstitutes/centreonaging/projects/caregiverassessment/instruments.aspx

Appendix

General Notes:

Reliability and Validity Information

Reliability Constructs

Internal Consistency – Measures whether several items that propose to measure the same general construct produce similar scores.

Test-retest Reliability – Measures the degree to which test results are consistent over time.

Assessment of Reliability:

Excellent = Greater than 0.9 Good = Between 0.8 and 0.9

Acceptable = Between 0.7 and 0.8 Questionable = Between 0.6 and 0.7

Poor = Between 0.5 and 0.6 Unacceptable = Less than 0.5

Validity Constructs

Construct Validity – Measures what it intends to measure

Convergent Validity – Degree to which two measures of constructs that should be related are related

Criterion Validity – The extent to which a measure is related to an outcome

Content Validity – Extent to which a measure represents all facets of a given social construct

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References Bohnert, N., Chagnon, J., & Dion, P. (2015). Population Projections for Canada (2013 to 2063), Provinces and Territories (2013 to 2038), Statistics Canada. Retrieved from http://www.statcan.gc.ca/pub/91-520-x/91-520-x2014001-eng.pdf. Accessed 25 October 2015

Butler-Jones D. (2010). Report on State of Public Health in Canada (2010), ‘Growing older– adding life to years.’ Retrieved from http://www.phac-aspc.gc.ca/cphorsphc-respcacsp/2010/fr-rc/pdf/cpho_report_2010_e.pdf. Accessed 25 October 2015.

Canadian Institutes of Health (2009). Supporting informal caregivers – the heart of home care. Ottawa (ON). Retrieved from https://secure.cihi.ca/free_products/Caregiver_Distress_AIB_2010_EN.pdf Accessed on 30 September 2015.

Dudgeon, S. (2010). Rising tide: The impact of dementia on Canadian society Alzheimer Society of Canada, Retrieved from http://www.alzheimer.ca/~/media/Files/national/Advocacy/ASC_Rising_Tide_Full_Report_e.pdf. Accessed on 01 October 2015.

Dumont, S., Jacobs, P., Fassbender, K., Anderson, D., Turcotte, V., & Harel, F. (2009). Costs associated with resource utilization during the palliative phase of care: A Canadian perspective. Palliative Medicine, 23(8), 708-717.

Eales, J., Kim, C., & Fast, J. (2015). A snapshot of Canadians caring for persons with dementia: The toll it takes. Research on Aging, Policies and Practice Retrieved from: http://www.rapp.ualberta.ca/~/media/rapp/Home/Documents/2015-10-7_Dementia_Caregivers_in_Canada.pdf. Accessed 10 October 2015.

Hollander, M., Guiping, L., & Chappell, N.L. (2009). Who Cares and How Much? Healthcare Quarterly. 12(2), 42-29.

Kitts J. (2012). Health council of Canada Report on homecare priorities. ‘Seniors in need, Caregivers in distress.’ Retrieved from http://www.alzheimer.ca/durham/~/media/Files/on/Media%20Releases/2012/April%202012/HCC_HomeCare_2d.pdf Accessed 15 September 2015

Sinha, M. (2012). Results from General Social Survey ‘Portrait of Caregivers’, Statistics Canada. Retrieved from http://www.statcan.gc.ca/pub/89-652-x/89-652-x2013001-eng.pdf

Smetanin, P., Kobak, P., Briante, C., Stiff, D., Sherman, G., & Ahmad, S. (2010) Rising Tide: The impact of dementia in Canada 2008 to 2038. Risk Analytica, 2009. Retrieved from: http://www.alzheimer.ca/~/media/Files/national/Advocacy/Rising_Tide_RiskAnalytica.pdf. Accessed on 01 October 2015.

Stajduhar, K., Funk, L., Toye, C., et al. (2010). Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008). Palliative Medicine, 24, 573-93.

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http://www.statcan.gc.ca/pub/91-520-x/91-520-x2014001-eng.pdf


http://www.phac-aspc.gc.ca/cphorsphc-respcacsp/2010/fr-rc/pdf/cpho_report_2010_e.pdf

http://www.phac-aspc.gc.ca/cphorsphc-respcacsp/2010/fr-rc/pdf/cpho_report_2010_e.pdf

https://secure.cihi.ca/free_products/Caregiver_Distress_AIB_2010_EN.pdf

http://www.alzheimer.ca/%7E/media/Files/national/Advocacy/ASC_Rising_Tide_Full_Report_e.pdf

http://www.rapp.ualberta.ca/%7E/media/rapp/Home/Documents/2015-10-7_Dementia_Caregivers_in_Canada.pdf

http://www.rapp.ualberta.ca/%7E/media/rapp/Home/Documents/2015-10-7_Dementia_Caregivers_in_Canada.pdf

http://www.alzheimer.ca/durham/%7E/media/Files/on/Media%20Releases/2012/April%202012/HCC_HomeCare_2d.pdf

http://www.alzheimer.ca/durham/%7E/media/Files/on/Media%20Releases/2012/April%202012/HCC_HomeCare_2d.pdf


http://www.alzheimer.ca/%7E/media/Files/national/Advocacy/Rising_Tide_RiskAnalytica.pdf

Developed for Covenant Health

Network of Excellence in Seniors’ Health and Wellness by

Dr. Jasneet Parmar, MBBS, and Lori-Ann R. Sacrey, PhD

© 2016

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