Study Area and period
This study was employed in Jimma medical center (JMC) which is located in Jimma zone, Oromia region, South west of Ethiopia. It is 350km far from Addis Ababa, the capital city of the country. JMC is one of the oldest and only teaching and referral hospital in southwest of Ethiopia with 800 bed capacity and over 15 million people catchment population .
JMC is accompanied with various units such as dental clinic, dermatology clinic, laboratory unit, pathology unit, psychiatry clinic, ENT clinic, physiotherapy unit, surgical unit (general surgery, neurosurgery, orthopedics, urology, and plastic surgery), internal medicine with sub-specialty of cardiology and neurology, ophthalmology, radiology, oncology, gynecology & obstetrics and pediatrics to serve the community. The study was employed from July 20 to August 20, 2021.
To conduct this study an institutional based cross sectional study design was employed.
The source populations of the study were all family caregivers of diagnosed cancer patients who were attending JMC oncology unit.
The study population
The study populations were all sampled family members of patients diagnosed with cancer and who were on treatment/ follow-up/ care in JMC oncology unit.
Inclusion and Exclusion criteria
All Family caregiver of cancer patient who had treatment / care follow-up in JMC oncology unit during study period and willing to participate were included.
All family caregivers of cancer patients who were not willing to give information, age< 18 years, and with severe functional or cognitive impairment were excluded.
Sample size determination and sampling technique
Sample size determination
Single population proportion formula was used to determine sample size by considering the Prevalence of family caregiver burden 50%, desired degree of precision of - 5 % and Zα/2 is the value of the standard normal distribution corresponding to a significant level of alpha (α) of 0.05, which is 1.96 and sample size was 384. Since the source population was < 10,000, the reduction formula was used to get the new sample size 192, then by adding 10% for non-response rate, the final sample size for the study was 141.
First, Jimma medical center (JMC) was selected based on the availability of cancer care service. Then, lists of cancer patients who had treatment/follow-up were identified from registration book of JMC oncology unit. Finally, the respondents were selected by simple random sampling technique. Boxes containing papers with codes 0 and 1 was used for the care takers to pick the papers at random without replacement and the care takers who pick 0 was not participate in the study and the one who pick 1 was participated in the study and this was given each respondent an equal chance of being selected without bias.
Care giver burden (Physical, psychological, emotional, economic and social)
- Socio-demographic factors of caregivers of cancer patients such as age, sex, educational status, marital status, monthly income, patient-caregiver relationship type, number of members in family, number of financial dependent people, occupational status, availability of other support.
- Socio-demographic factors of cancer patients: age, sex, educational status, Residential place, marital status, monthly income, occupational status, Patient’s independent level, types of cancer, duration of disease (acute/chronic) since diagnosed, duration of treatment modalities, payment for medical service, stage of cancer, co-morbidity, health-related quality of life such as physical, psychological, emotional, and social well-being.
- Care related factors: place of care, caring time, types of care and duration of care.
Data collection tools
A pretested semi-structured interviewer administered questionnaire was formulated from different literature & modified in to the study context. The questionnaire contained closed-ended and open-ended questions that was used to assess socio-demographic and economic characteristics of care givers of cancer patients. An outcome variable (presence of caregiver burden) was collected which defines caregiver burden by physical, psychological, social and financial response that might emerge while providing care. Zarit Burden Interview (ZBI) which has 22 items was used to measure the level of care giver burden. The items were defined subjectively and focused on the emotional response of caregivers. Each question is scored on a 5-point scale ranging from never to nearly always present. Total scores range from 0 (low burden) to 88 (high burden). If ZBI total score of <21, 21 to 40, 41 to 60 and > 61 indicates little or no, mild to moderate, moderate to severe and severe burden, respectively .
Additionally, Caregiver Burden Inventory (CBI) which consists of 24 items Likert-format scale for which the responses are scored on a five-point (0–4) was also used to measure five dimensions of burden. These dimensions include developmental (describe the caregivers' impression of being left behind, unable to enjoy similar anticipation and possibilities with regard to their peers), time dependency (burden on caregiver due to limited time), physical (impression of chronic tiredness and physical health related problems), social (which describe caregivers' sense of perceived conflict roles), and emotional burden (caregivers' antagonistic feelings toward their patient, which can be evoked by the patient's eccentric and episodic behaviour).
The total score ranges from 0 to 96 and score > 36 shows a danger of “severe burden” and scores near or slightly above 24 show a necessity to desire some form of reprieve care. The internal consistency coefficient for this tool ranged from 0.92 to 0.94 . The Cronbach”s alpha coefficient of this study was 0.88.
Data collection procedure
Semi-structured interviewer administered questionnaire was used to collect the data by four trained data collectors. Data was collected from respondents after informing the purpose of the study and how to fill the questioner by face to face. Continuous follow-up and supervision was made by Principal Investigator (PI) during the data collection period.
Data quality control Assurance
First data was prepared in English and translated to Amharic then re-translated back to English by expert of languages to maintain data consistency. Pretest was made in 10% of sample size in other health facility that have similar service.
Data processes and analysis
The collected data was emended, coded and entered in to Epidata version 3.1 then transferred to SPSS version 23. Farther data cleaning such as editing, recording, checking for missing values, and outliers were done. Data analysis includes basic description and identification of possible indicators of care burdens of families of cancer patient. Multivariable logistic regression model was fitted, Adjusted Odds Ratio (AOR) at 95% confidence interval and p-value <0.05 were estimated to determine statistically association between predictors and outcome variables. Descriptive statistics was computed to summarize the data. The result of this study was presented using frequencies, proportions, figures and tables.
Ethical clearance was obtained from Jimma University school of Nursing. prior to data collection, letter of permission was locked from Jimma medical center administrator, and informed consent was obtained from respondents after the purpose of the study was explained to them. The personal identities like name of the respondents, confidentiality of the information they gave and privacy of the respondent were maintained.