The age of the participants ranged from 22 to 54 years. Twelve of the participants were female and 1 was male. Nine of the participants were married. All caregivers cared for their first-degree relatives (mother, father, child, sister, and spouse) at home. A total of 5 major themes emerged from the data: (a) Nature of the disease; (b) Unmet needs; (c) Unpleasant physical, psychological, and social experiences; (d) Care facilitators; and (e) Positive experiences.
Nature of the Disease: This theme referred to the caregivers' experience in relation with caring for a patient with the Covid-19. They stated that the experience of caring for a patient with Covid-19 was different from their previous caring experiences. This theme included 2 subthemes: “fluctuating symptoms” and “emergent and unpredictable disease.”
Fluctuating Symptoms: This subtheme indicated the caregivers' experience of fluctuating symptoms of the disease. According to the caregivers, recurrence of the disease symptoms after partial relief, reversal of the symptoms, and appearance of unexpected symptoms caused them to feel hopelessness, fear, and stress. In this regard, one of the caregivers said,
“My husband’s fever stopped for a few hours, but I did not know whether to help or not because the fever started again and this happened over and over again. Sometimes, he was feeling good and sometimes he was feeling bad; such fluctuating symptoms bothered me.” (Caregiver 5)
Emergent and Unpredictable Disease: Most caregivers felt anxiety in dealing with this disease because COVID-19, as an emerging and unknown disease, has no definitive treatment and its course is unpredictable.
“This is an emergent disease; even physicians do not know much about it. It is evident that caring for these patients is difficult.” (Caregiver 1, caring for a sister)
“It was a really difficult experience given that the disease is unknown; I did not know how the disease would progress.” (Caregiver 4, taking care a husband)
Unmet Needs: This theme was about needs of caregivers that were not met and made the care experience challenging and difficult for caregivers. The subthemes were lack of knowledge, lackof health facilities, and financial problems.
Lack of Knowledge: All participants considered lack of knowledge and care skills as one of the main problems in caring for patients with COVID-19. Most caregivers expressed that they doubted their ability to care, their information needs were not met, and they feared that this lack of knowledge and skills would cause harm to the patient. One of the caregivers described her experience as follows:
“When my mother's shortness of breath got worse, I did not know what I was doing was right or not. I told myself ‘I may endanger her life and make her worse.’ It would have been great if I had a source to guide me.” (Caregiver 2, Taking care of a mother)
Lack of Health Facilities: According to the caregivers, problems caused by lack of health facilities included lack of access to health care services, lack of access to physicians, lack of telemedicine, and lack of counseling center and psychological support.
One of the caregivers said, “If there was a special care center for COVID-19 patients that provided 24-hour services, people did not have to spend a lot of time on visiting physicians. Consequently, stress and anxiety would have been reduced in caring for the patients.” (Caregiver 2, caring for a mother)
“Considering the quarantine situation, we do not want to leave the house. I wish some physicians visited the patients using WhatsApp or video calls.”(Caregiver 9, caring for siblings)
Financial Problems: This subtheme was extracted from the statements of the caregivers who cared for male patients with nongovernmental jobs. These participants indicated that they had financial needs during the quarantine and mentioned that the government should support patients with financial and health packages. “My husband is self-employed; he could not leave the house for almost 3 weeks due to the disease and we were in financial difficulties. The government should provide financial assistance to financially weak families.” (Caregiver 5, caring for a husband)
Unpleasant Physical, Psychological, and Social Experiences: Caregivers described experiences that were physically, psychologically, or socially unpleasant and even painful at time. This theme consisted of the following subthemes: unpleasant physical experiences, unpleasant psychological experiences, and unpleasant social experiences.
Unpleasant Physical Experiences: Some caregivers reported experiencing physical problems, such as sleep disturbances, anorexia, and allergies caused by overuse of disinfectants, and fatigue. “I did not sleep until the wee hours of the morning because I was worried and anxious about my husband. I wanted to pay all my attention to him.” (Caregiver 13, caring for a husband)
Unpleasant Psychological Experiences: All participants had unpleasant psychological experiences. They described this period as difficult and terrifying. These experiences varied, but the most common ones were fear, anxiety, worry, sadness, hopelessness, and mental preoccupation about the disease outcome. A caregiver mentioned,
“My mind was occupied by thinking about my mother. I thought she may get worse and die, God forbid! All these thoughts made me sad, upset, depressed, and frustrated.” (Caregiver 6, caring for a mother)
“I had a dark and sad period.” (Caregiver 10, caring for a 4-year-old child)
Unpleasant Social Experiences: Caregivers' unpleasant social experiences, including experiences occurring when they encountered negative reactions from healthy people in the community. They felt socially rejected and deprived because their friends and family members avoided contacting them because they thought the caregivers may be disease carriers. Moreover, they were home alone with the patient, which made them feel lonely.
“Even after the quarantine period was over, others would distance themselves from me and shouted 'Why did you come out?' and I felt very upset.”(Caregiver 2, caring for a mother)
Care Facilitators: This theme included factors that facilitated the care process for caregivers and included subthemes of social support, adaptive mechanisms, and intrinsicmotivations.
Social Support: According to the caregivers, social supports entailed practical supports, such as providing food and necessities of life and guidance for care as well as emotional support that encouraged them to continue caring with strength.
“My family members phoned and encouraged me. This reduced the loneliness and severity of the caring process. (Caregiver 3, caring for a husband)
Adaptive Mechanisms: All caregivers used some mechanisms to reduce the care-related stress. They applied adaptive mechanisms, such as positive self-talking, distracting, seeking information from various sources, as well as praying and trusting God.
“When my mind was occupied with illness and death and fear took me over, I immediately distracted myself by doing something or playing with children.” (Caregiver 7, caring for a husband)
Intrinsic Motivation: Participants expressed a sense of responsibility regarding the patient and family health. The interest between caregiver and care recipient as well as observation of the healing process (as an internal driver) made the caregivers enjoy caring for the patient rather than performing a task that is imposed on them. A male caregiver who cared for his wife indicated, “I accepted the responsibility to take care of my wife to protect our life and children. So, I took care of my wife with all my heart and soul.” (Caregiver 12, caring for a wife)
Positive Experiences: Based on the participants' statements, caring for patients with COVID-19 also had some positive outcomes for caregivers: promoting spirituality, improving relationships, and growth.
Promoting Spirituality: Most participants mentioned that caring for patients with COVID-19 showed them that life could be shorter than they thought. Thus, they realized that this world and its material gains were not worth the attachment. They concluded that human beings should not immerse themselves in materialism and luxury. Most of the participants also believed that this period strengthened their faith in God. In other words, they felt that their relationship with God got stronger and their appreciation increased for the blessings of life, especially the blessing of health. In this regard, one of the caregivers said, “My faith in God have peaked during this period because I heard that some people, physically healthier than my husband, died due to COVID-19 but my husband survived. This was mere grace of God.” (Caregiver 7, caring for a husband)
Improving Relationships: Most participants reported that caring for a patient with COVID-19 improved their relationship with the patient. As they noted experience of living with and caring for someone for 2 weeks increased their interest in each other, and they appreciated each other during this period. Some caregivers stated that this experience increased their ability to forgive others, increased their tolerance threshold regarding the others' discouraging behaviors, and lowered their expectations of others, which improved their relationships with others.
“Now, I realized how important we are to each other, I feel we got closer.” (Caregiver 7, caring for a husband)
Growth: Some caregivers, especially younger individuals, stated that the experience of caring for a critically ill patient made them stronger and more responsible and provided them with a sense of growth.
“I became much stronger, as I gained experience and learned how to protect myself from fear and stress.” (Caregiver 9, caring for siblings)