key: cord-0856258-pf38jyql
authors: Akbarbegloo, Masumeh; Sanaeefar, Mahnaz
title: Interpreting the Lived Experiences of Home Caregivers in the Families of Patients with Covid-19 in Iran: A Phenomenological Study
date: 2022-01-12
journal: Int J Qual Health Care
DOI: 10.1093/intqhc/mzab144
sha: aab7d9e0136060ea4bc71c6726871287ab6c3695
doc_id: 856258
cord_uid: pf38jyql

BACKGROUND: Following the spread of Covid-19, many patients received home care services for recovery. The family is one of the informal caregivers who provide daily physical and psychological support to the patient, and they have the most contributions in the care of patients. Accordingly, this study explains the experiences of home caregivers in the families of patients with Covid-19. METHODS: This is a qualitative study with a hermeneutic phenomenological approach. Purposeful sampling was applied, and semi-structured interviews in the Center of Covid-19 Control in Khoy, Iran, were used to collect the information. Twenty-three family caregivers, who had already provided care for patients with Covid-19 at home, participated in the study. The themes emerged from interviews. The interviews were recorded and transcripted then analyzed using Dickelman’s interpretive phenomenological approach. RESULTS: 13 primary concepts, six sub-themes, and three main themes were extracted from the data analysis, including "Irrational fear of disease" with sub-themes: fear of getting infected and Indulging in strength of immune system, "Increasing the burden of care in caregivers" with sub-themes: lack of support and caregiver`s family challenges and "Self reinforcement" with sub-themes: highlighting positive features and turning to spirituality. CONCLUSION: Understanding the complexities, experiences, and beliefs of family caregivers about living with a Covid-19 patient provides a comprehensive perception of the psychological and physical consequences of care. Executive decision-makers, health care personnel, and mental health professionals can also take the necessary strategies to support and manage home caregivers and interdisciplinary cooperation.

Covid-19 is the third known animal coronavirus after Severe Acute Respiratory Syndrome (SARS) and

Middle East Respiratory Syndrome (MERS) [1] . Although that Covid-19 can be transmitted through droplets, close contact (within 1 m), aerosols, and possibly oral-fecal transmission, patients can also transfer the virus to other people in the incubation period [2, 3] . It is associated with Acute Respiratory Syndrome (SARS) and Middle East Respiratory Syndrome (MERS), but shows some specific pathogenic, epidemiological, and clinical features that are not fully understood to date [3] .

There have been 26,468,031 confirmed cases of Covid-19 globally, including 871,166 deaths in the world and 382,772 confirmed cases of Covid-19 with 22,044 deaths in Iran based on the report of the World Health Organization (WHO) on September 5, 2020 [4] .

Patients with mild symptoms of Covid-19, without chronic conditions that are aware of the disease can be care and treatment at home by compliance with all precautions. Family caregivers should apply the principles of home care to these patients. Despite the existence of numerous epidemiological studies on the outbreak of disease, there is little information for support family caregivers of patients with Covid-19 [5] . The effects of Covid-19 may have impacted caregiving intensity, which is defined as the amount and type of care provided by informal caregivers [6] . It also may have affected caregiver's caregiver burden, which is defined as the impacts on physical and mental health, and health-related quality of life may also have changed due to the pandemic [7] . One study found that informal caregivers are likely at greater risk for adverse effects on their health due to the pandemic as they have been found to have particularly more stress and suffer from more depression and physical problems [11] .

The different nature of Covid-19 and the need to maintain public safety, will limit the physical presence with patients, and therefore caregiving in this situation will be unique for everyone involved. The importance of maintaining social distance to control the Covid-19 pandemic probably increased isolation, loneliness, psychological stress and other adverse health problems [12] . Social and family relationships are disrupted not only for patients but also for their caregivers [13] . Mirzaei etal (2020) indicated that caregivers of patients with Covid-19 face greater challenges compared to other caregivers because of limited training and resources at hand and their lack of knowledge about this emergent disease and the way to care for the patient [14] .

The result of a review showed that sleep disorders, fatigue, and inadequate self-care were recognizedas common physical health problems in family caregivers [15] . Other qualitative and quantitative study show that family caregivers may also grapple with anxiety, depression, apathy, disappointment, loneliness, and isolation because of reduced social interactions and social exclusion while providing that care [16, 17] . Covid-19 conditions have overwhelmed family caregivers, as well as others in the community, with new economic stressors such as job loss by the household head and high medical expenses. Many family caregivers have other roles in addition to the caregiving role such as managing their job, housekeeping, child care and additional responsibilities and concerns about their children's education due to school closures from Covid-19. They also must strive to protect themselves and other family members from virus transmission and all of this is more difficult to manage than caring for other disease or in other situations [18] . Abendroth et al. also argued that the anxiety about caring for a patient at home can be reduced by seeking information in caregivers as an adaptive strategy [19] .

Given the importance of home care follow-up and self-care education to patients and families, counseling centers and home care services are obliged to provide the necessary training to families to provide care Evidence shows home-based caregiving effects on caregiver's quality of life and life satisfaction. Due to the combination of social distancing recommendations, stay-at-home orders, limitations on gatherings, and the disproportionate impact of Covid-19 itself on mortality and morbidity among older adults, there is a critical and immediate need to understand the specific challenges and changes experienced in family caregivers [7] .

Considering the peak of Covid-19 in Iran and the lack of human resources, physical space, protective and therapeutic equipment in hospitalization of patients, many Covid-19 patients with mild to moderate 5 symptoms are obliged to receive home care services. Since most of studies have focused on the experiences of patients or health care staff and few studies has been conducted on family caregiving experiences in Iran and global level, so the consideration of caregivers' experience and their problems is necessary to plan services and support them. Therefore, better understanding how the pandemic has impacted home caregivers can inform future interventions to address stress and health problems stemming from caregiving through the pandemic along with the everyday issues normally encountered. This study was conducted to explain the lived experiences of home caregivers in the families of patients with Covid-19.

Phenomenological approach, was developed by Taylor and Bogdan, 1975 to the social sciences [23] but Diekelmann et al. 1989 applied hermeneutic phenomenological approach in health and nursing education [24] . So this qualitative study was carried out using Dickelman's method. This study is used when the researcher needs the revelation of the little-known or unknown phenomenon through an in-depth examination of the lived experiences of people involved in that phenomenon [25] . The present study was conducted in the Center of Covid-19 Control at the Khoy University of Medical Sciences, Iran.

The study participants consisted of 23 family caregivers who provided care for patients with Covid-19 at home and willingness to participate in research. Participants were selected using purposeful sampling method. Inclusion criteria are participants who have patients with Covid-19 at home based on laboratory tests (PCR, or clinical symptoms and positive lung CT scan) and home caregivers who have cared for a patient with Covid-19 for at least 14 days and have not affected by Covid-19 during the care of a patient.

Exclusion criteria included participants who showed clinical signs of Covid-19, home caregivers who cannot take care of the patient, incapable of verbal communication, and any psychological disorder that 6 causes a lack of transfer the individual experiences. Sampling continued until data saturation was achieved when the researchers perceived that no new themes were emerging. Saturation in qualitative studies constitutes the completion of code levels, and new conceptual information requiring new code or expansion of the existing code is not obtained [26] .

The semi-structured interviews were used for data collection. After explaining the goals and importance of research to the participants, the informed consent was obtained to participate and record the interviews.

Participants were assured that the obtained information would be used only for the research and would remain confidential. The interview was planned and implemented concerning the qualitative questions of research and focusing on the experiences of home caregivers of patients with Covid-19 (Table 1) .

Interviews were conducted individually with 23 participants at the private rooms of Covid-19 Control Headquarters, where there is no or minimal employees commuting to the place, having proper ventilation and a window to the outside of the building, while maintaining a social distancing of at least 2 meters with the participant, and using gloves and masks. Each participant was interviewed only once, the total number of interviews was 23 and there was no conflicting data. The interviews lasted between 45 and 60 minutes, and then interviews were transcribed by putting speech of participant into written or printed form. Data were collected from April to March 2020.

Phenomenological philosophy is based on believs of Taylor and Bogdan have dominated in the social sciences [23], but in the health and medical sciences especially in nursing used Dickelman's approache of hermeneutic approache for interpreting data [24] . This approache used when the research purpose is understanding the human lived experience. In this way, the researcher categorizes the data by interpreting the discourse of participants [24] . So in this study, the interviews were analyzed using the principles of hermeneutics phenomenology as developed by Diekelmann (1989) . This qualitative approach was selected because it gives a high level of access to participants' lived experience [24] . The analysis was done by a 6-member interpretive team and involves Dickelman's 7-step of analysis (Table 2) .

Credibility, Confirmability, Transferability, and Dependability by Lincoln & Guba (1985) were employed to achieve the trustworthiness and validity of the study [27] . Credibility means that the findings of the study are real and that the findings reflect the research objective and social reality of the participants. To ensure the credibility of the findings, there was a prolonged engagement with the participants and data.

The findings were shared with some of the participants. For this purpose, the transcribed interview and the extracted primery codes were presented to the participants, and they commented on its accuracy, and in case of any discrepancies, they were considered. To ensure the confirmability of the findings, the interviews and all procedures taken to conduct the study were recorded and complementary comments of research team were applied in data analysis. To check the dependability of the findings, an external reviewer who was familiar with both the clinical setting and qualitative research was asked to review and confirm the results. The transferability of data was achieved by maximum variation of the samples such as different levels of age, education, occupation and family relationship with the patient.

Participants' demographic details and their relationship to the patient are presented in Table 3 . The themes emerged from quotes of family caregivers ( Table 4 ). The codes extracted from the interviews led to the emergence 13 primary concepts, 9 sub-themes, and 3 main themes (Table 5) .

Because of the permanent intellectual engagement about the transmission of the Covid-19 to the caregiver and family members, frequent washing and disinfection of hands and home appliances was done. As some caregivers were suffering from respiratory allergies but, due to obsessive thoughts and fear about getting infected with the virus, could not emancipate themselves from these behaviors.

Some caregivers had too much sensitivity to strengthen the immune system through which they could reduce the risk of affliction with the disease. They tried to consume diverse herbal teas, which properties of some of them have not been approved, to strengthen the immune system.

Many patients and caregivers expressed that the government and medical team were unaware of their care problems at home. In most cases, patients are cared for in a shared room at home with other family members, and there was no separate room or suitable place in the house to care for them. Besides, necessary training about patient care was not given to the caregivers. Moreover, lack of financial resources, high cost of treatment, job interruptions, … was caused financial burden in families and caregivers.

Patient care by the family caregivers provides a context for neglect and inattention of other family members. This issue is a predisposing factor for damage to family members. Therefore, many caregivers assumed that their pressure and stress they endure are more than patients. That is because the caregiver must not only meet the patient's needs but also be responsible for a lot of family problems and issues.

Putting the caregivers under the challenging conditions of care provision caused the revelation of positive human characteristics such as patience, strength, and resilience in the face of hardships, calming down, increasing a sense of altruism, and helping people in need.

Given the exposure of caregivers to stressful events such as caring for a patient with Covid-19, spiritual growth emerged in them and made them more resistant to the hardships caused by the care. There were things like a change of attitude in life, deepening the relationship with God, appreciation for blessings, being thankful for God's blessings, and hoping in God in the direct quotes of these participants.

The themes obtained from the interview with the participants were an attempt to achieve the main purpose of the study that was to explore the experience of home caregivers of patients with Covid-19.

The results of this study showed that long-term care, performing tasks related to patients 'daily activities and patients' psychological problems, along with the physical fatigue of caregivers, had caused mental disorders such as burden, obsessive behaviors and fear of disease transmissionin in caregivers. Of course, in addition, the participants had positive experiences such as tending or serving to strengthen itself. Therefore, it can be said that the disease had positive and negative consequences on caregivers. The development of obsessive behaviors, increasing the burden of care in caregivers and high human achievements are the important themes of the present study.

The Irrational fear of disease was one of the main themes. Participants stated that thoughts of fear of transmitting infection and disease automatically enter their minds. Due to these obsessive-compulsive behaviors, the duration and frequency of hand washing and sterilization of equipment dramatically enhanced in them. Caregivers said they were too sensitive to boost immune system to help the patient to overcome the virus and prevent other family members from becoming infected.

In this respect, the study of Brooks et al. (2020) demonstrated that fear of disease transmission and concern of getting infected with the Covid-19 increases dramatically in critical situations and epidemics.

This concern in families with small children or pregnant women is much more than in other families [28] . concerned with their family situation and are continuously seeking extreme care for them [29] . Moreover, Louca etal. (2021) study showed that a number of micronutrients have been shown to play key roles in supporting immune function and in reducing risk of respiratory infection, also they observed modest but significant association between use of dietary supplements and lower risk of testing positive for SARS-CoV-2. However the results were significant only in women but not significant in men [30] . Considering that, it is reasonable to hypothesize that vitamin supplementations may enhance host immune responses against Covid-19.

The problems of patients, lack of support for the patient and family are the basis of many stresses that targeted the participants' souls. Hence, one of the themes derived from this study was the increased burden of care in caregivers. Wang et al. (2011) also revealed that some factors could influence increasing the care burden. Some of these factors are concerns associated with the risk of afflicting disease, ambiguity in the status of career prospects, lack of income-generating resources, lack of adequate facilities at home in the period of home care, and the lack of sufficient support of the medical and governmental system of patients after discharge [31] . Asgari et al. (2020) identified several challenges in family caregivers of patients with Covid-19, the main themes of the study were "captured in a whirlpool of time" and "feeling helpless" and "loneliness". A part of these experiences was due to careers, to protect other family members and friends against getting the virus, isolating themselves due to a fear of others becoming infected [32] . Thus, providing relevant information on symptoms, medical and protective care, support in preventing disease complications, and identifying the factors that cause the burden of care on the caregiver is essential [33] .

Many participants had economic concerns. The families of patients who are cared for at home and can not go to work suffer from great economic pressure [13] .The research performed by Brooks et al. (2020) indicated that financial concerns are among the adverse psychological outcomes of closure because of home quarantine. Governments and policymakers should make the necessary mutual trust to people in the community and offer financial compensation for their losses [28] . Furthermore, the findings of the study conducted by Hertz-Palmor et al. (2021) indicated that the most significant psychological problem that arose after the recovery of SARS in China was the reduction of financial resources and household incomes so that it was regarded as the highest predictor of reducing mental health [34].

One of the most prominent positive consequences caused by caring for family caregivers was self reinforcement. The caregivers felt that they had become a human being who were more insightful and mature in the care process. They expressed that caring has led to a deeper relationship with God, appreciation of blessings, gratitude for God's blessings, better acceptance of situation, and a positive direction in life.

Investigations have also indicated that those who use positive strategies to cope with stress decrease adverse outcomes and increase positive results [35] . Religious behaviors and beliefs have a positive impact on the meaningfulness of life. Behaviors such as trust in God, worship, pilgrimage, etc. can bring inner peace to individuals through creating hope and encouraging positive attitudes and they can incur less damage in the exposure of stressful life events [36] . Besides, divine fate has been taken into consideration from two perspectives. Some people consider it as a God bless, others believe that these events awake people and they are an opportunity for people to be prepared for the present situation [32] .

One of the limitations in this study was the personal characteristics and mental concerns of the participants affecting their response. Therefore, by explaining to the participants before the interview and conducting in-depth interviews, the researcher tried to minimize this limitation. In the case of lacking preparedness of participants, another time was considered for the interview. One of the strengths of the present study is variation in sampling. Attempted to sampled from the caregivers of different age, gender, cultural, social, and economic domains.

Health care providers are required to consider the role of family members in providing care for patients and their home care challenges. Also, it is recommended that interventions such as education to the patient and his/her caregiver, counseling, family therapy, and referral to financial support groups to reduce the pressures of caring should be considered. This can both promote the quality of patient care and guarantee the physical and mental health of caregivers as unknown patients. It is recommended for the health staff to check the health of these people regularly via telephone and, if possible, provide in-person visits daily. Besides, sharing positive experiences of family caregivers allows the researchers to design interventions to decline negative consequences. Reading and rereading descriptions -Transcription was read as a whole to gain an overall understanding and impression of the narrative -Then, the narrative was reread line by line Second writing interpretive summaries and coding for -Short interpretive summaries were written, and the common themes with exemplar quotations from the narrative were identified to support emerging themes the interpretation -Clusters of themes were merged and these classifications were named. Third analyzing selected transcripts as a group to identify themes -Collaborative analysis was performed, to do these meetings were held biweekly to discuss interpretations for similarities, differences, or contradictions. Fourth

Returning to the text or to the participants to clarify disagreements in interpretation and writing a composite analysis for each text -If conflict occurred or further interpretation was needed, the group returned to the original text and reread all texts to identify hidden meaning and link themes. -Or were consulted the original interviewers for clarification.

comparing and contrasting texts to identify and describe shared practices and common meanings -The researcher compared and interpreted the relational themes to uncover the constitutive patterns existing within the relational. The constitutive pattern expressed the relationship of all the previously identified themes Sixth validation of the interpretations -Draft themes and constructive patterns were observed by the researcher's supervisor. -All responses and suggestions received were integrated into the final draft. -The individual texts and audiotapes were also reviewed many times to allow the researcher to become further immersed in the hermeneutic circle, gain an in-depth understanding of each participants' experiences, and further validated the interpretations. Seventh eliciting responses and suggestions on a final draft -Excerpts from the participants' own words that reflected the strong meaningful transactions were included in the final written report. I'm really afraid that the disease will be transmitted to me." "We washed our hands a lot with soap and alcohol, we became obsessed. When we go out on the street, if we do not shake hands, we will go home again after washing and wash our hands. Well, one is afraid."

hands "Because of the constant washing of hands and disinfection of furniture and kitchen utensils with Javel Water (Sodium hypochlorite) before each use, I am suffering from lung problems, even my child has an obsession and washes his/her hands constantly." "Because my husband has a heart disease, both he and I were very upset about Corona. I even disinfect the inside and outside of the car and then I get in the car. I disinfect the phones several times a day. All of the things that I buy from the outside, first take out the bags and then, if they are washable, I wash all of them or disinfect their surface. "Previously, if I washed the fruit once, now I put the fruits in a pan, disinfect them with vinegar and salt, leave them for half an hour, and then wash them again."

Continuous disinfection of surfaces "Permanently, I give my daughter strengthening foods and a variety of effervescent tablets at home to eat them and recover sooner because it is believed that Vitamin C and D are excellent." "The doctor said that I should give fruits that contain high vitamin C to my son at home because it strengthens the immune system. I also buy oranges, tangerines, lemons, grapefruits, oranges and kiwis wherever I saw, and then I would take the juice and let it eat."

Excessive use of vitamins "My wife and me drink ginger and lemon herbal tea every day so that our bodies to be strong. I became highly sensitive to the immune system of myself and my family."

"I knew that they get Corona, should drink plenty of warm fluids, so I went to a store of medicinal herbs and bought mint, thyme, chamomile and a few other herbs in combination and gave them to my parents to drink every day in a form of herbal tea." Isolation of the caregiver their grandmother's house. I was worried that would get a corona and that my children would be without a mother. It has been about two months since I did not huge my children, fed them or slept with them." "I was worried about my mother having diabetes and heart disease. I had nightmares that my mother had taken a corona. I am very dependent on my mother and I am always worried about losing her." "The patient's caregiver is more engaged in the situation and is under pressure than the patient himself because the caregiver follows up all the patient's work and needs. On the one hand, he is looking for drugs; on the other hand, looking for the cost of living. Moreover, he has to do all the sick work at home. Now, judge for yourself." "During this time I went to work and took care of the patient at home. I felt I had no strength left. Most of the relatives would call to ask for help, but I did not even have enough time talk to them." Strict conditions of caregivers towards patients "We did not tell any of our relatives or neighbors about my father's disease, for we knew that if they found out, they were bothering us, would constantly ask how he was afflicted with the disease, why he did not respect, and they look at us completely differently as if we have a leprosy patient at home." "Community perception of Covid-19 is not just a disease and is not limited to a person with the disease, but is identified as a person who most likely did not have health behaviors and as a result of these unhealthy and careless behaviors, they have get corona. So we did not want anyone to know about the disease."

Hiding the disease from relatives and others "During this period, I became stronger and more patient. I think I can tolerate difficult situations more easily. Difficult situations can be in terms of finance, loneliness, and problems that can happen to humans." "My husband is a touchy and irritable person. He has made a thousand excuses since he got sick and I take care of him at home. But I think God has increased my patience and strength so that I can take care of my husband and children. Now I am facing the problems of life alone, well, this disease, which is not permanent, we have to increase our patience and endurance."

Patience in difficult conditions "Now, I have become more discerning, I have realized and understood my mother's love for myself more. I have found that if I am at this position at present, it is because of my mother's forgiveness and sacrifice." "Nothing makes me feel better and happier than seeing my wife calm and well, thank God I am by her side and I can help her."

Opportunity for love "Now, many things have changed a lot, I appreciate life more, I appreciate what God has bestowed me, and I appreciate my health so much more than before, maybe I was a little unaware of it, I thank God for all this." "In general, caring has given me knowledge, the knowledge of the path I am going to take, where I have made mistakes in life and where I have used the blessings of God correctly, it has made me aware that I am always grateful for the health that God has given me. In a word, I want to say that I became another human being."

Appreciation for blessings "This disease influenced me a lot. I got closer to God, the opening out of a heart for God makes me very calm, and it is the reassurance of my heart. I am less ungrateful, and I always think He knows the best of everything." "It is true that I did not leave anything for my son at home, but I was also worried about his condition. Every time I prayed and recited the Quran, and I even vowed that God would cure my son of this disease. God has helped me everywhere and I am sure that he will never leave me alone."

Nearness and recourse to God Table 5 : Main themes and sub-themes extracted from the interviews conducted

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This study implies that much attention should be paid to psychosocial, physical, Mental, family