Assessment of Caregiver Burden

in Rwanda, Africa

William Luchtefeld, RN, MSN-R, APRN, Doctorate of

Nursing Practice Candidate

Diana C. Sundara, RN, Ph.D,

Victoria Baker, Ph.D, CNM, CPH

Nsabimana Damien, MD

Caregiver Burden in Rwanda

Introduction

Purpose of the study

Background

Methods

Results

Implications

Future plans

Statement of the Problem

Caregivers of chronically ill persons in Rwanda, Africa

are not able to have caregiver burden assessed

because a tool is not available in their local language.

Needs Assessment

Consequences of increased caregiver burden

Increased risk of hospitalization

More frequent emergency room visits

Purpose of research The purpose of this research was to adapt the Zarit

Burden Interview so caregivers of chronically ill

persons in Rwanda can be assessed for caregiver

burden.

Mapi Research Trust. (2014). Zarit Burden Interview Version 1.0: Scaling and scoring version 3.0. Retrieved from

http://www.proqolid.org/instruments/zarit_burden_interview_zbi

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.

Background

Caregiver burden assessment tools

Burden Assessment Schedule

Modified Caregiver Strain Index

Zarit Burden Interview; most widely used

105 different scales used (Durme, Macq, Jeanmart & Gobert, 2012)

Chronically ill population in Rwanda:

HIV 45%

Cancer 28%

Other: heart disease, cirrhosis, renal failure, paraplegia

27% (Nyamwasa, 2009)

Zarit Burden Interview First published in 1980 (Zarit, Reever & Bach-Peterson)

with a 29 question version

22-question version is considered the standard (Zarit,

Orr, & Zarit, 1985)

There are also 12, 8 and 4 question versions.

Translation process

Translation of the ZBI into Kinyarwanda

Two independent translators

Afterwards > Version 1

Back translation: yields Version 2

Field Testing: yields Version 3

Proofreading: this yielded the final version

Translation process Version 1

Much discussion about what to call the patient

Umurwayi = sick person

Translator 1; wrong word

Translator 2: best word

Back translator: umurwayi wawe = your sick person

Methods: Setting/subject recruitment

Outpatient clinic/palliative care in a rural hospital in Rwanda-Kibogora Hospital

Nurse did pre-screening to assure subjects did not feel mandated to participate

Institutional Review Board approval from Frontier Nursing University and Kibogora Hospital

Consent form in English and Kinyarwanda

Subjects unable to read had consent read to them

Interview conducted in private room (nurse’s changing room)

Methods: Sample 30 Subjects

Inclusion criteria: Subject is caregiver for a chronically ill person (such that the patient required family assistance to come to the outpatient clinic) or

Subject’s family member is enrolled in palliative care and

Subject has signed informed consent

Exclusion criteria

Unwilling to spend 60 minutes participating

Subject’s native language is Kinyarwanda

Subject is not paid to be the caregiver

Patient is not critically ill

Two potential subjects were excluded: one caregiver under 18 years and the other because the patient was critically ill

Methods: Measurements &

Instruments

Data collection tool: demographic data

Activities of Daily Living (Katz)

Instrumental Activities of Daily Living (Lawton)

Zarit Burden Interview-Kinyarwanda (Version 2)

Cognitive debriefing tool

Single point measurements

Methods: Measurements &

Instruments

After demographic information, ADL, IADL and ZBI

were completed…

Subjects were asked to paraphrase each question of the

ZBI-Kinyarwanda

Subjects were asked to circle and words/phrases they did

not understand in the ZBI-Kinyarwanda

Subjects were asked to give alternative wording to the

words/phrases they did not understand

Minor adjustments to the ZBI-Kinyarwanda were made as

the study progressed from subject 1 to subject 30

Results-demographics Caregiver age 18-86 years, mean 41.3 (SD =16.5)

0

1

2

3

4

5

6

7

8

9

18-19 20-29 30-39 40-49 50-59 60-69 70-79 80-89

Caregiver age in years

Total

Results-demographics Relationship of caregiver to patient

Demographics: caregiver

occupation Cultivators: 24

Teachers: 3

Student: 1

Housekeeper: 1

Veterinarian: 1

Demographics: caregiver 19 or 63% of the caregivers lived with the patient

Only one of the caregivers were employed

Duration of caregiving 1 month – 5 years; mean 8

months (SD = 14.6)

Demographics: caregivers

Education:

50% (n=15) had no formal education

43% (n=13) 1 to 6 years

7% (n=2) completed secondary school or university

Some subjects could read; all but two had the consent

and interview read to them

Demographics: patient Age: 18-86 years, mean 47.7 (SD=19.9)

Diagnosis: dementia (1), palliative care (2), chronic

illness (27)

Gender: 13 female, 17 male

ZBI-Multiple Regression

Analysis Adjusted R square: 0.655

Anova: F 11.87, significant

ZBI-Kinyarwanda Multiple regression analysis

Caregiver age: older age = higher ZBI

Months of caregiving: fewer months = higher ZBI

Patient age: younger age = higher score of ZBI

Activities of daily living score (ADL);

low ADL score (more dependent)= higher ZBI

ZBI-Kinyarwanda Number of correctly paraphrased questions: 20-22

Question 8: “Do you feel your relative is dependent upon you?”

Question 8: Subjects answered “God”. Abeshejweho- used exclusively when talking about God. Word was changed to atunzwe- no religious connotation

Question 11 had one word changed

Only other changes: grammar

ZBI-Kinyarwanda Document forwarded to MAPI Trust

https://eprovide.mapi-trust.org

Available for use for research/clinical purposes

Next step: reliability and validity testing in various

populations

Develop a shorter version for clinicians

References Conde-Sala, J. L., Garre-Olmo, J., Turro-Garriga, O., Vilalta-Franch, J., & Lopez-Pousa, S. (2010).

Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer’s disease: an exploratory comparative design. International Journal of Nursing Studies, 47(10), 1262-1273.

Durme, T. V., Macq, J., Jeanmart, C., & Gobert. M. (2012). Tools for measuring the impact of Informal caregiving of the elderly: A literature Review. International Journal of Nursing Studies, 49, 490-504. DOI: 20.1016/j.ijnurstu.2011.10.011.

Mapi Research Trust. (2014). Zarit Burden Interview Version 1.0: Scaling and scoring version 3.0. Retrieved from http://www.proqolid.org/instruments/zarit_burden_interview_zbi

Nyamwasa, P. (2009). Current Situation of Palliative Care in Rwanda. Rwanda National Palliative Care Policy. Retrieved from: http://pdf.usaid.gov/pdf_docs/pnaed053.pdf

Paterson, J., & Zderad, L. (1976). Humanistic nursing. New York, NY: John Wiley & Sons.

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.

Zarit, S. H., Orr, N. K., & Zarit, J. M. (1985). The hidden victims of Alzheimer’s disease: Families under stress. New York: New York University Press.

Zarit Burden Interview-

Kinyarwanda

Are there any questions?