Center to Improve Care of the Dying

CAREGIVER AND FAMILY BURDEN

Literature Review

A review of the Medline database was conducted for articles pertaining to family burden and palliative care or terminal care. We also searched the Cancerlit database. We found a total of 16 articles published between 1983 and 1996. In addition, we selected references from the methods sections of those articles pulled, and the George Washington University online catalogue was searched for relevant books.

I. Potential instruments

Based on the review of the literature on family burden, I have found 9 potential instruments which are listed below.

a. Caregiver Strain Index (CSI)-Robinson 1983.
b. Cost of Care Index (CCI)-Kosberg 1986.
c. Caregiver Burden Measures -Siegel 1991.
d. The Burden Interview (BI)-Zarit 1980.
e. Objective and Subjective Burden Scales 1985.
f. The Burden Scale-Schott-Baer 1995.
g. Family Impact Survey-Covinsky 1994.
h. Caregiver Burden-Stull 1994.
i. Caregiver Burden Inventory (CBI)-Novak 1989.

II. Review of potential instruments

I am recommending the Caregiver Strain Index (CSI) by Robinson for inclusion into the Toolkit. Looking at the Table provided, you can see my review of each of the 9 scales. I will go into greater detail of the measures and give my reasons for recommending them for the Toolkit.

A. Caregiver Strain Index

i. Conceptual and Measurement model (Does the scale represent a single domain or do model scales measure distinct domains? Is the variability of the scale reported? What is the intended level of measurement i.e. ordinal, interval, ratio, or category?)

These measures represents the major domains cited in the literature on caregiver burden: Employment, Financial, Physical, Social and Time. Burden is a multi-dimensional; therefore, we must measure the different domains. The CSI has at least one item for each domain. There is one overall score which is obtained by summing the 'yes' responses. The index measures objective burden, but does not measure subjective burden.

Throughout the literature on burden there is debate about the importance of subjective vs. objective measures. On the one hand, subjectivity is important because people interpret their situations differently and to assume caretaking activities are stressful is wrong. However, it is hard to develop interventions on evaluations of subjectivity; whereas, objective measures give more concrete directions for developing programs to help relieve strain. For the purposes of the Toolkit, I feel that measuring objective burden is of more significance. The CSI has shown to be significantly related to psychological distress and health of the caregiver; therefore, should be useful in helping hospitals develop interventions to reduce the burden. Also, this index was shown to have significant relationships with caregiver employment and age which indicates that it may be a useful tool in predicting caregivers who are at a higher risk for burden. This would be helpful for developing programs to target these high risk caregivers in terms of educational materials and counseling.

Studies have shown that when caregivers have high levels of burden, patients report higher levels of unmet needs. Since, in the last month of life, we would expect caretaking activity to increase, it seems important to measure the level of caretaker burden. By doing this, clinicians can try interventions which could alleviate the burden when it is too high so that the patient is receiving the best care possible. This index would also be useful in evaluating how well the discharge care plan for the patient is working. In other words did the plan have enough service support for the caregiver so that all of the needs of the patient could be met?

ii. Reliability (Did they address internal consistency? Did they address reproducibility?)

The internal consistency of this index was measured by Cronbach's Alpha. The alpha level was high at .86, indicating good internal consistency.

iii. Validity (How did they address content related validity? Any information on construct related validity? Any information on criterion validity?)

The measures were associated with the physical and emotional health of the caregiver which gives the index construct validity. Items for the index were selected from previous interviews about strain with ex-patients and caregiver interviews which gives the index face validity.

iv. Responsiveness (Any information? Has the scale ever been used as an outcome measure? If so, in what populations?)

The index was used as a predictor of psychological and physical distress; although, it also is related to caregivers' subjective perceptions of the caretaker relationship, patient characteristics, age and employment which indicates that it could be used as an outcome measure.

v. Interpretability (What populations has it been applied to? Is the score translated into a clinically relevant event? Does the score predict outcome events?)

This index was used with a population of 85 caregivers of patients who had an acute hospitalization for arteriosclerotic heart disease or an operation of the hip. The caregivers were interviewed 2 months post-discharge.

vi. Burden (Any information on cost or time to administer? Does the instrument impact on the respondent? How long does a survey take to complete? Response rates? Any problems with missing data?)

No information was provided on the amount of time it takes to ask these questions. It does not seem to be very time consuming.

vii. Alternative Forms (What are the modes of administration? Alternatives? If alternatives exist, provide what is known for each of the above categories)

These are meant to be interview questions, although they could probably be written for self- administration.

viii. Cultural and Language Adaptations (Any information?)

This has only been done with US populations. No language adaptation was reported.

ix. Conceptual Rational for Recommendation

Throughout the literature on burden the importance of objective and subjective burden is debated. On the one hand, objective measures are important because they can be used to develop interventions, quality of care and effectiveness of interventions. On other the hand, the meaning one places on a task determines how burdensome the task is. We should not assume that objective burden measures are interpreted as being a burden for everyone.

Since the purpose here is to find instruments which can be used in the last month of life and can help in the assessment of quality of care and identify problem areas with care, I think that objective measures of burden are more important to assess at this time, than subjective measures. The CSI I am recommending has been shown to predict the psychological and physical well-being of the caregiver.

I must add that if you were to include a tool that could identify high risk caregivers before caregiving actually occurred (i.e. initial acute incidence) I would recommend the Cost of Care Index. It measures the subjective nature of burden and would be useful in identifying problems of burden before caregiving is received and could help in developing a care plan for a patient which would reduce caregiver burden and reduce the chance for unmet needs.

III. Priorities for future research

The area of burden research is not lacking in measures, but there are relatively few good measures of objective burden. Most of the measures are especially weak on the objective measures of burden with economic measures being the least developed. It would be very timely and important to further improve these measures at this time. With length of hospital stays shorter and more care being placed on the shoulders of families, the issue of burden is becoming a major concern. More research needs to be done on the dynamics of burden. What are the psychological, social, economic and health costs of caregiving. We may be reducing health care for the presently ill patient, but are we only creating more health problems for the health care system? What types of programs can be developed to reduce family burden?

References

Barrett TW and Scott TB. Development of the Grief Experience Questionnaire. Suicide and Life- Threatening Behavior 1989;19:201-215.

Covinsky, KE, Goldman, L., Cook, E.F., et al. The Impact of Serious Illness on Patients' Families. JAMA 1994;272:1839-1844.

Faschingbauer TR, Devaul RA and Zisook S. Development of the Texas Inventory of Grief. Am J Psychiatry 1977;134:696-698.

Gallager, D., Rappaport, M., Benedict, A., et al. Burden: A Review of Measures Used Among Caregivers of Individuals with Dementia. Paper presented at the Annual Scientific Meeting of the Gerontological Society of America 1985, New Orleans.

Gerritsen JC and Van der Ende PC. The Development of a Care-giving Burden Scale. Age and Aging 1994;23:483-491.

Kosberg JI and Cairl, R. The Cost of Care Index: A Case Management Tool for Screening Informal Caregivers. Gerontologist 1986;26:273-278.

Kosberg, J.I., Cairl, R.E. and Keller, D.M. Components of Burden: Interventive Implications. Gerontologist 1990;30:236-242.

Lev E, Munro BH and McCorkie R. A shortened version of an instrument measuring bereavement. International Journal of Nursing Studies 1993:213-226.

Lundin T. Long-term Outcome of Bereavement. Br J Psychiatry 1984;142:424-428.

Montgomery RJV, Gonyea JG and Hooyman NR. Caregiving and the Experience of Subjective and Objective Burden. Family Relations 1985;34:19-26.

Novak M and Guest CI. Application of a Multidimensional Care-giver Burden Inventory. Gerontologist 1989;29:798-803.

Pratt C, Schmall VL, Wright S and Cleland M. Burden and Coping Strategies of Caregivers to Alzheimer's Patients. Family Relations 1985;34:27-33.

Remondet JH and Hanson RO. Assessing A Widow's Grief--A Short Index. J Gerontol Nursing 1987;13:30-34.

Robinson BC. Validation of A Caregiver Strain Index. J Gerontol 1983;38:344-348.

Schott-Baer D, Fisher L and Gregory. Dependent Care, caregiver burden, hardiness, and self-care agency of caregivers. Cancer Nursing 1995;18:299-305.

Siegel K, Raveis VH, Houts P and Mor V. Caregiver Burden and Unmet Patient Needs. Cancer 1991;68:1131-1140.

Stull DE, Kosloski K and Kercher K. Caregiver Burden and Generic Well-Being: Opposite Sides of the Same Coin? Gerontologist 1994;34:88-94.

Theut SK, Jordan L, Ross LA and Deutsch SI. Caregiver's Anticipatory Grief in Dementia: A Pilot Study. International Journal of Aging and Human Development 1991;33:113-118.

Yancey D, Greger HA and Coburn P. Determinants of Grief Resolution in Cancer Death. J Pall Care 1990;6:24-31.

Zarit SH, Reever KE and Bach-Peterson J. Relatives of the Impaired Elderly: Correlates of feelings of Burden. Gerontologist 1980;20:649-655.

Zisook S, Devaul RA and Click MA, Jr. Measuring Symptoms of Grief and Bereavement. Am J Psychiatry 1982;139:1590-1593.

Section prepared by Mary Jo Roach