The data collection team, consisting of 5 qualitative researchers, conducted the study in 1 pediatric ward and 1 adult male medicine ward in each of 3 tertiary care public teaching hospitals: Rajshahi Medical College Hospital (RMCH), Faridpur Medical College Hospital (FMCH), and Suhrawardi Medical College Hospital (SMCH), Dhaka, Bangladesh. In public tertiary care hospitals, patients with infectious diseases shared large rooms with patients with noninfectious diseases where family members and visitors had access.

This evaluation included unstructured observations and in-depth interviews. The use of combined methods allowed the investigation team to verify and cross check the data collected by each approach and provided a depth of understanding that might not have been achieved through the use of a single method.¹² Between April and May 2007, the team conducted 48 hours of observation: 20 at Rajshahi Medical College Hospital, 14 at Faridpur Medical College Hospital, and 14 at Suhrawardi Medical College Hospital. From past experience working in hospital settings, the team knew that the frequency and nature of caregiving performed varied by time of day. Therefore, observation hours were split between daytime hours (9:00 a.m. to 2:30 p.m.), when there was more activity; evening hours (3:30 p.m. to 9:00 p.m.), when there was reduced activity; and at night (10:00 p.m. to 12:30 a.m.), when there was even less activity. There was a median of 30.5 beds (interquartile range, 30–33) in the patient ward, but each observer was responsible for observing a maximum of 10 patients and their respective caregivers. The observers sat either on a stool or on an empty patient bed and recorded interactions between family caregivers and patients and caregivers’ behavior and practices as detailed handwritten notes.

The team conducted 12 in-depth interviews with family caregivers: 6 from pediatric wards and 6 from adult, male, medicine wards between September and October 2007 with family caregivers who had spent at least 5 hours per day in the hospital for at least 2 days so that the respondents had some experience of patient care activities. Interviewers asked family caregivers questions about the amount of time they spent with patients, the type of care given to patients, and their knowledge of disease transmission and prevention.

The primary author (M.S.I.) reviewed the observation field notes and made a list of all observed patient care activities performed by family caregivers. M.S.I. tallied the frequency of each caregiving activity. The team transcribed the in-depth interviews verbatim, read interviews line by line, and developed a code list and a definition for each code. When new information that did not fit with the existing codes was identified while reviewing the transcripts, 1 researcher created new codes and shared them with the whole team to reach a consensus on new code definitions. The researcher entered all the data into text-organizing software according to the code list, and M.S.I. reviewed the coded data to capture the main research themes and concepts.

M.S.I. categorized observed activities as being either bedside nursing, cleaning, or psychologic care, and each of these was further categorized as being either direct or indirect caregiving activities (Table 1).

The team obtained consent from the hospital authorities for the study. The hospital wards were public places, and we recorded family caregivers’ activities as public behavior. For in-depth interviews, we received informed written consent from all respondents. The study protocol was reviewed and approved by the International Centre for Diarrhoeal Disease Research (icddr,b) Ethical Review Committee, and the Centers for Disease Control and Prevention’s Human Subject Research Office relied on icddrb’s Ethical Review Committee.

The team observed family caregivers providing 1,592 episodes of bedside nursing such as feeding and administering medicine, preparing food and medicine for patients, changing patients’ clothes, and making patients’ beds. Family caregivers fed patients food, medicine, and drinks 272 times. While feeding patients, caregivers ate patients’ leftover food or shared food from the same plate 32 times. Before eating and feeding patients, family caregivers rinsed their fingers and plates with water 71 times; putting a small amount of water on a dinner plate and then rinsed the fingers of their right hands in the water for 5 to 10 seconds. No family caregivers were observed washing their hands with soap prior to eating.

The more severe the patients’ disease, the more hands-on care they received. Family caregivers poured water on the patients’ heads, gave them sponge baths, and placed a small cloth on their foreheads 140 times during observations. After those events, the team observed caregivers wiping the patients’ bodies, faces, and heads with a small cloth 106 times and with the edge of the caregiver’s shari (a long unstitched cloth worn by the female caregivers) 7 times. Family caregivers wiped patients’ mouths after vomiting, coughing, sneezing, and after feeding 84 times. The team observed caregivers using a small cloth to wipe patients’ mouths 4 times after vomiting and 11 times after coughing, and they used a small cloth 8 times to wipe nasal secretions. They also observed caregivers using the edge of their sharis once after coughing and 4 times to wipe patients’ nasal secretions. For 1 patient who was severely ill and frothing at the mouth, family caregivers were observed wiping the patient’s respiratory secretions continuously with a small cloth. Family caregivers also used a small cloth or the edge of a shari to wipe their own hands and faces. Family caregivers provided more bedside nursing for children than for adults (48% vs 30%, respectively, of the total care was provided by family caregivers). Family caregivers reported that health care workers informally taught them to do some bedside nursing tasks. One caregiver of a child said, “I give gas (nebulizer) to my child. I also give oxygen (held the oxygen mask). They (nurses) taught us to do some jobs ourselves…. The doctors taught me to clean the saliva from my child’s mouth using one finger wrapped in a piece of cloth so that the child can breathe easily” (26-year-old female caregiver).

Family caregivers emptied and cleaned the plastic bowls kept under the bed for waste disposal; emptied urine collection bags; cleaned vomit, blood, or feces from the bed or the floor; and cleaned the anuses of pediatric patients 215 times. A family caregiver of an adult male patient described the cleaning responsibilities assumed by him, the patient’s mother, and the patient’s wife: “We clean the patient’s feces and change his clothes. There is a plastic sheet over the bed cover and when the patient defecates on this plastic sheet, they (the patient’s mother and wife) put it in a bucket and go to the bathroom and wash it there” (36-year-old male caregiver).

During the observation periods, there were 10 handwashing stations for family caregivers in the study wards, but only 2 of them had running water, and none had hospital-supplied soap. The team observed family caregivers washing their hands with soap only 4 times: once after cleaning the bedside trash bin, once after emptying a urine bag, once after cleaning a patient’s feces, and once after throwing away a syringe used for administration of a medication.

The team observed family caregivers providing psychologic support 258 times. This type of care included giving comfort to patients by hugging and kissing them, carrying pediatric patients around the ward to entertain them, holding pediatric patients in their laps, and frequently moving their hands gently over the patients’ bodies and heads to comfort them (Table 2). An interviewed caregiver said, “I spend almost twenty-four hours with the patient. I often gossip with the patient to give him pleasure” (19-year-old male caregiver).

During observation, the team observed that caregivers’ emotions, such as fear and anxiety about the severity of the patients’ illnesses, motivated them to maintain physical closeness. At night, we observed 197 family caregivers attending 153 patients, 104 of whom slept in the same bed with patients.

Family caregivers described the hospital ward as a “family” and its patients and caregivers as “family members.” Family caregivers informed us that they often looked after patients other than their relatives. One family caregiver said, “We (family caregivers) stay here (in patient ward) like a family. If one family caregiver has to go to call the nurse and leaves their patient alone, I stay near that patient and keep an eye on him or her” (45-year-old male caregiver).

Family caregivers understood the term chhoache to indicate the mode of transmission of some diseases in which an infection is transmitted through touching patients or contact with their secretions and excretions. During interviews, the majority of the respondents (10/12) mentioned that they had heard about contagious diseases and were able to recall a number of them, including diarrheal diseases, tuberculosis, and other common contagious diseases in Bangladesh. Three respondents reported that they did not have knowledge about contagious diseases prior to this hospital visit, and they heard about them from the nurses and doctors during their stay in the hospital wards. However, family caregivers did not fully understand the biomedical explanation of contagion. They provided multiple examples of transmission of infectious diseases in hospital settings that were related to touching surfaces and objects contaminated with patients’ secretions and excretions (Table 3). For example, many family caregivers knew that diarrhea could be a water-borne disease, but examples they gave suggested that many did not fully understand the oral-fecal route of diarrheal infection. One respondent described that, when the bathroom floor is dirty, the tap water in the bathroom is more likely to be unsafe to drink: “Diarrhea spreads from lack of cleanliness…. in this ward; the caregivers often clean the diarrhea patients’ feces in the bathroom and sometimes the feces sticks on the floor. The family members of other patients collect water from the bathroom and wash their utensils. The patients also use the tap water from the bathroom. The patients and the family caregivers might get infected from this tap water” (36-year-old male family caregiver).

Some of the family caregivers linked transmission of diseases to religious beliefs or supernatural powers. One respondent mentioned that contagious disease spreads if someone fears it, and if someone does not like the person with the disease, then he/she will get it, too. Another respondent perceived that disease is God’s will. She said, “Diseases are Allah’s order. If Allah wants to give a disease to anyone, Allah will” (62-year-old female caregiver).

Family caregivers perceived that maintaining proper hygiene by washing hands, keeping food and water covered, and disposing of patients’ feces in toilets or commodes could reduce diarrheal disease transmission in hospitals. Some respondents also mentioned that avoiding touching patients’ mucus, urine, and feces would reduce transmission of contagious diseases from patients to caregivers. One family caregiver said, “We know that we should not touch the cough (mucus) or urine of those who have such diseases…. If anyone eats an infected person’s leftover food or drink, he/she will get that disease. [People] should not share their leftover food and drink” (30-year-old female caregiver).