ORIGINAL ARTICLE
Year : 2022 | Volume
: 9 | Issue : 4 | Page : 465--471
Hermeneutic phenomenology of lived experience of family caregivers of critically-ill patients sustained by healthcare technologies in Benin City, Nigeria
Olaolorunpo Olorunfemi1, Chinomso Ugochukwu Nwozichi2,
1 Department of Medical-Surgical Nursing, Federal University, Oye- Ekiti, Ekiti State, Nigeria
2 Department of Adult Health Nursing, Babcock University, School of Nursing, Illishan-Remo, Ogun state, Nigeria
Correspondence Address:
Mr. Olaolorunpo Olorunfemi
Department of Medical-Surgical Nursing, Federal University, Oye- Ekiti, Ekiti State
Nigeria
Abstract
Background: Critical illness causes a severe financial impact on households not only because of illness-related inability to work but also because of the cost of medical care. Although the patients have the potential for recovery, they are usually presented with a life-threatening situation. Our study aimed to explore the lived experience of family caregivers caring for critically-ill patients. Materials and Methods: A qualitative study using a hermeneutic phenomenological design, to explore the lived experience of ten family caregivers caring for critically-ill patients admitted to the University of Benin Teaching Hospital, Benin-city in 2022. This study followed a hermeneutic phenomenological design using an in-depth interview of ten family caregivers who met the inclusion criteria: a family member who participated actively in the care was included. Data were collected, transcribed, and analyzed using Nvivo software and Paul Ricoeur’s theory for interpretation. Results: Based on Paul Ricoeur’s theory of interpretation, five themes were identified as the experience of family caregivers: caring neglect, psychological support, and words of encouragement, lack of confidence in nursing intervention, hopeless situation, and financial burden. Conclusion: This study shows that understanding the experience of family caregivers provides better and quality care. It also found that the hospital management needs to be aware of the identified caring neglect among family caregivers and provide a comprehensive health policy to accommodate their physiological needs while in the hospital
How to cite this article:
Olorunfemi O, Nwozichi CU. Hermeneutic phenomenology of lived experience of family caregivers of critically-ill patients sustained by healthcare technologies in Benin City, Nigeria.MGM J Med Sci 2022;9:465-471
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How to cite this URL:
Olorunfemi O, Nwozichi CU. Hermeneutic phenomenology of lived experience of family caregivers of critically-ill patients sustained by healthcare technologies in Benin City, Nigeria. MGM J Med Sci [serial online] 2022 [cited 2023 Mar 28 ];9:465-471
Available from: http://www.mgmjms.com/text.asp?2022/9/4/465/365986 |
Full Text
INTRODUCTION
The adoption of technology in healthcare is gaining popularity globally.[1] Healthcare professionals are beginning to integrate technology into the care they render to patients and their relatives. While these technologies have been proven to prolong life and quality of life for patients who are critically ill, the thought of having a relative being sustained with multiple gadgets and technologies can generate untold stress and anxiety among relatives.[2] It is an undeniable fact, that the use of healthcare technology at this stage of life can cause some concerns and distress to both the person living with a critical illness, professional nurses, and their family members. The Nigerian culture allows for a sick family member to depend on other household relatives for care and sustenance even when they are being managed in the healthcare setting.[3] Most times, these family caregivers are buried in the stress of caregiving, which is described as the burden of care.[4] This is compounded extensively by the emotional torture of seeing loved ones connected to multiple machines and technologies [Figure 1]. From the literature review, only one study was found that explored the experiences of family caregivers while participating in the care of patients who used mechanical ventilators.[5]{Figure 1}
While nurses are expected to have been trained in the application of certain technologies in healthcare,[6] it could be overwhelming when they have to take care of persons who were dependent on technology with their family members. The researcher found that there is no available study that explored the concern, feeling, and fear of the family members who participated actively in caring for critical illness patients that dependent upon healthcare technologies in the hospital. In most cases, family members believed that nurses are not giving them enough recognition but are focused more on the use of machines, and not seen as part of the caregiver team.[7]
In order, to develop a policy that will address these concerns and fear, one needs to know the lived experiences of family caregivers as they engaged in caring for a patient with critical illnesses sustained by healthcare technologies. Having the understanding that the expression of caregivers’ experiences at this point could foster a restructuring of the care given to persons with a critical illness and it could assist nurses to improve their competency by acknowledging family caregivers as partners in their care. This will provide better quality care for patients in the Intensive Care Unit (ICU). Therefore, this present study explored the lived experiences of family caregivers attending to critically ill patients sustained with healthcare technologies in the hospital.
MATERIALS AND METHODS
Design and setting
The research design chosen for this study was the Hermeneutic phenomenological design, suggested by Patton, and Haynes 2014; as a framework permitting researchers to query the experiences of a person or group of persons, to understand both meaning and structure of those experiences.[8] In the hermeneutic phenomenological approach, the meanings of the lived experience are discovered through the interpretive findings of the text of life.[9] This study was conducted at the University of Benin Teaching Hospital, Benin-city, Edo State, Nigeria. The hospital provided the opportunity for the patient’s family members to participate in caring for the patients in the units. They allow family caregivers to come into the unit in the evening time after taking care of the patient and on special occasions, they also allow them in. Though the visiting time is limited, there is this assurance that despite not being allowed to stay with their patient, they were actively involved in their care. The care activities provided by the family caregivers include the provision of anything needed such as beverages or other personal items to take care of the patient, washing the patient’s dirty clothes, providing psychological and spiritual support, and so on.
Participants
The participants were family caregivers in the intensive care unit of the University of Benin Teaching Hospital. Inclusion criteria included: Being a primary or active family caregiver, who participated in caring for his/her loved one with a critical illness and was sustained by healthcare technologies. An exclusion criterion was family caregivers who are on and off in the hospital, these set of relatives just come to visit their loved ones and go back to their houses. They only partake in the care once they are around and are not fully on the ground.
Data collection
The family caregivers who met the criteria were invited to participate. Interviews were arranged mutually but they were allowed to choose the right place for the interview. Individual interviews were conducted using probes and interview guides to explore their experience as they partake in the care of a patient with a critical illness sustained by healthcare technologies in the hospital. The interview duration was from 45 to 60 minutes with an audiotape recorder. A code number was assigned to each participant for identification and confidentiality of data.
Data analysis
A hermeneutic phenomenological approach was used, and interviews were conducted, recorded, and transcribed. The Words, phrases, and statements describing the experiences of family caregivers caring for their family members with critical illnesses sustained with healthcare technologies in the hospital were highlighted and identified from the interview transcriptions. These statements were put together to form themes reflecting descriptions of the family caregivers’ experiences. All themes that had the same meaning or related to each other were grouped as a thematic category. Having chosen a hermeneutic phenomenological approach for this study, Paul Ricoeur’s theory of interpretation was used. This theory of interpretation provides one approach through which researchers using hermeneutics can achieve congruence between philosophy, methodology, and method.[10] Ricoeur’s theory of interpretation acknowledges the interrelationship between epistemology (interpretation) and ontology (interpreter).[11] Also, Ricoeur notes the way interpretation moves forward from naive understanding, where the interpreter has a superficial grasp of the whole of the text, to deeper understanding, where the interpreter understands the parts of the text about the whole and the whole of the text about its parts (the hermeneutic circle).[12] In this way, Ricoeur’s theory of interpretation provides researchers with a method of developing inter-subjective knowledge. Through exposition of the concepts of Ricoeur’s theory, which include distanciation, appropriation, explanation, understanding, guess, and validation, a hermeneutic approach to textual analysis is presented, discussed, and critiqued [Figure 2].{Figure 2}
Trustworthiness of the study
As qualitative research is carried out, it becomes essential to ensure that the data collected and reported on is trustworthy.[14] Identified the importance of validity in qualitative research to assess for and ensure both accuracy and credibility in a researcher’s findings. There are four particular areas in qualitative research that were addressed to mitigate issues of trustworthiness. These four areas of trustworthiness include credibility, transferability, dependability, and Confirmability.
Findings
Ten family caregivers were the participants in this study. Seven participants were Christian and, three were Muslim. The mean age was 37.6 years old. Eight participants were women and two were men. Two participants had a second degree in education, five participants had first degrees (bachelor’s degrees in different fields), and three had secondary school. Regarding the relationship between the participants and the patients, we found that four participants were daughters and three participants were wives. One participant was a mother, two were husbands. The time duration that the participants were engaged in caring for their loved ones with critical illnesses sustained by healthcare technologies for human care was from 1 to 3 weeks.
Five thematic categories structured the meaning of the participants’ experiences. These are: The free nodes that talked about the individual’s experience and its outcomes for them were collected under the theme Personal experience and outcomes
Caring neglect
Psychological support, words of encouragement
Lack of confidence in nursing intervention
Hopeless situation
Financial burden
These thematic categories were reflective of Ricoeur’s theory of interpretation and were applied to the key concepts of distanciation, appropriation, explanation, and interpretation,
Theme 1: Caring neglect
Caring neglect, while caring for their loved one, this thematic category describes the participants’ feeling that nurses and the hospital managers demonstrated uncaring attitudes toward them. They were in the hospital corridor and nobody care about their welfare. The family caregivers experienced difficulty in taking care of themselves while caring for their loved ones with critical illnesses sustained by technologies because the management of the hospital does not make provision for the required facilities for family caregivers. The nurses and other health care providers rarely take care of their physiological needs, such as provision for a bathroom, toilets, rooms where patients’ relatives can sleep, and so on.
“My Mum was on admission in the Intensive care unit (ICU) for one month before she died, during this period I had to resign from my job to stay with her, and for the first two weeks, I was sleeping outside the door of the intensive care unit, inside mosquito and cold. It is like I am enslaved in my own country. After this period, I fell seriously ill with malaria, cold, and catarrh. I was still on malaria drugs when my mum died. I was stressed I cannot forget that experience.”(R4)
Theme 2: Psychological support, words of encouragement
It is essential to pay attention to the emotional, physical, and mental health of critically ill patients, even given simple words of encouragement from relatives go a long way to give them inner strength, this thematic category describes the person with a critically ill disease and being sustained with health technology still have a chance of recovery or living a little time longer, if there is Psychological support, through words of encouragement from the relative. The participants provide Psychological support to their loved ones and give them hope in life, even in the face of death and a panicky technological environment.
“When my daughter was seriously ill and was admitted into ICU, every hope was lost, even the nurses and doctors told me that her chance of surviving the situation is very low. I encouraged her not to fear and be calm. I touched her body she was not responding but I have the feeling that she can still hear me; I decided to tell her how I valued her. I told her since the day I gave birth to her she had made my life brighter and brighter. You’ve been such an important part of my life, and for that, I’ll always be grateful to God for having you. I so admire the warm, funny, genuine person you are. My life will forever be better because you’ve been part of it. Thanks for being the one and only you and for being a blessing to so many people, I know your good work will not allow you to die now; we need you to finish the good work you are doing. You are a strong woman, fight harder and come back to me, your children are waiting for you at home. You will need to hold on for me to celebrate your birthday, as we use to do”. After months of this, my daughter came back from unconsciousness, stabilized and discharged to the female medical ward of the hospital and later discharged home’’ (R8)
Theme 3: Lack of confidence in nursing intervention
The patients’ relatives Lack confidence in nursing intervention or do not trust their procedures. This thematic category describes that the participants do not trust what the nurses were doing for their patients because they do not see any sign of improvement in the patient situation, all they see is the complexity of the different technologies and all they heard were different frightening alarms with different sounds. So they were not sure if the nurses were doing the right thing. They understood that the alarms were an indication of improper functioning of their patient body system. The nurse or the doctor does not educate on what different sounds mean, and not all suggest problems.
“I have been in this hospital since three weeks ago, following mum’s condition and being admitted to the intensive care unit. My experience has not been a good one at all, because I am always afraid anytime the nurses are coming out of the ward as if they are about to announce the death of my mother. After all, since my mother was transferred here about three weeks ago, my mum has been unconscious; this makes me feels that the nurse, doctor, and other health worker are not doing the right thing. I have spent a lot but I am not seeing any results. I just pray that they are not using my mum to do practice, since it is a teaching hospital. The only thing I am hearing from the ward is the sound of different alarms, I felt scared anytime the alarm sounded. I believe it is a bad sign. Most of the time the alarm is the one that announces the death of a patient, based on what I have seen in the unit for the past three weeks”. (R5)
“I have been in this hospital since three weeks ago; I only take a few hours off daily to take care of our children at home because I don’t have any family in this town since we just moved in not up to two months ago. My experience in this hospital has not been a good one at all, because I have spent a lot but I cannot see any changes in my wife’s condition, she still cannot talk to me. I am contemplating transferring her back to my hometown because I am not sure the nurses and the doctors are giving her the right treatment.” (R2)
Theme 4: Hopeless situation
In a hopeless situation, this thematic category describes that the participants do not have hope of their loved one recovering and being discharged home. Hopelessness is a powerful emotion that often contributes to low mood and may adversely affect the way one perceives individuals, personal circumstances, and even the world. Often hopelessness can have a significant influence on human behavior, as it may reflect an individual’s negative view of the future. Feelings of hopelessness often make the participants lose interest in important objects, activities, events, or people. When the participants became hopeless, they will no longer value things that were once important to the care of their loved ones. The emotion is often associated with a lack of inspiration as well as feelings of powerlessness, helplessness, abandonment, captivity, oppression, and isolation concerning the situation of their loved ones.
‘‘My husband has been on admission to the intensive care unit (ICU) about a month ago; I am expecting his condition to improve in a week. I thought that the various gadget put on him could save his life. I don’t think my husband will make it... How will I take care of my children, how am I going to pay house rent? I am finished, my enemies finally caught me. I am so scared any time the doctor or the nurses call me because I know they will soon announce the death of my husband” I think is better to commit suicide before they announce his death” (R3)
Theme 5: Financial burden
Financial burden refers to the medical cost experienced by the participants. Critical illness imposes substantial burdens on the participants. However, participants with low economic status are more likely to spend a higher proportion of their household income on the additional costs brought on by the illness. Financial burden increase self-reported levels of stress and reduces participants’ levels of risk aversion for their loved one.
“Due to this sickness my dad lost his job and we have exhausted his life savings, my mum borrows a lot of money in her office to the extent that she can no longer work freely in the town. I think is better for my dad to rest peacefully now, but the nurse refuses to help us achieve this, I don’t know where we are going to get money to pay any further bills” (R1)
DISCUSSION
The findings revealed that the participants in this study felt caring and neglected while caring for their loved ones in the hospital. This is because the hospital management does not make provisions for the patient family relatives; they demonstrated uncaring attitudes toward them. A family caregiver is called a team of individuals that are connected by bonds of marriage, blood, and adoption, and interact with their loved ones with a critical illness.[15] The hospital management kept them in the hospital corridor and nobody care about their welfare. Despite huge investments in health, Nigeria’s health system underperforms relative to countries that spend less on health in the area of family-centered care. Even though family-centered care and the relatives’ participation care model were integrated into health practice in Nigeria, family caregivers remain an essential force in the care of critically ill patients yet are poorly attended to by healthcare authorities.[16] There is a need to pay attention to the needs of family caregivers in the intensive care unit through a comprehensive health policy to accommodate their physiological needs while in the hospital to take care of their loved ones.
Most patients have families that are providing some level of care and support. In the case of family caregivers of patients with critical illnesses sustained by healthcare technologies, they provide informal care that can be substantial in scope, intensity, and duration. Family caregiving raises safety issues in two ways that should concern nurses in all settings. First, caregivers are sometimes referred to as “secondary patients,” who need and deserve protection and guidance, because their caregiving demands place them at high risk for injury, adverse events, and other harms. This study finding is in agreement with the recommendation and guideline given by the world health organization in March 2020 which said that basic facilities should be available for all patients, family members, and visitors, and should be available within 5 minutes in the hospital environment.[17] To further explain care neglect, a study was carried out by Nemati et al. 2018 on the Perceptions of family caregivers of cancer patients about the challenges of caregiving: A qualitative study found that family caregivers suffered care neglect and therefore opined that care provided in an atmosphere of suffering and discontent diminishes caregiver’s quality of life and quality of patient care; hospital managers need to consider the challenges and sufferings faced by family caregivers and should seek to obviate them through appropriate plans.[18] Lack of sleep can be a big issue for a family caregiver, Sleep deprivation can take a huge toll on a caregiver who is already feeling the strain of being burned by the news of the critical illness of his or her loved ones.[19] The lack of restrooms in Nigeria hospital for patients’ relative that are on admission result in inadequate sleep duration from night to night among family caregivers, and this is associated with multiple health outcomes. It calls for major concern among hospital managers to put this into consideration while planning hospital buildings.
Moreover, this study revealed that Psychological support, and words of encouragement from patient relatives when caring for their loved one in the intensive care unit can promote quality of life. This is in agreement with a study carried out in 2018 on Supported decision-making from the perspectives of mental health service users, family members supporting them and mental health practitioners they concluded that hospital stays are always accompanied by stress and worry and suggested that Psychological support, improve the healing process and help patients feel safe and more empowered with managing their recovery.[20] When family members are supported during their relative’s admission to the ICU, they are better able to make sense of the situation, feel valued, and offer critical expertise to the healthcare team resulting in better healthcare for the patient.[21]
Lack of confidence in the nursing intervention was a relevant issue for the participants in this study. The main cause of Lack of confidence was that they do not see an immediate sign of improvement in their loved one’s situation. Family caregivers who treat patients with critical illness undergo significant stress, and they may feel angry with nurses and doctors for their inability to cure the patient or angry at themselves for not catching the illness at an earlier stage.[22] The nurses must understand this possibility and give proper health education to the family caregivers about critical illness. Critical illness disease is a disease that presented with life-threatening symptoms and is reasonably expected to result in the death of the patient if not well treated.[23]
Furthermore, the Hopeless situation among participants in this study was also a major concern. Family caregivers may experience feelings of anxiety and insecurity that are only increased by the stressful circumstances related to intensive care units such as most patients seems not to be improving and the high death rate that occurs in the unit. The hopeless situation is consistent with the findings from other studies that found that the family caregivers lived through times of insecurity regarding the unexpected patients’ situation and most time do not believe that the patient could survive.[24],[25]
In addition to that, the financial burden experienced by the participants is another concern. Financial burden refers to the direct medical costs experienced by the participants. This finding is in agreement with a study that found that financial costs associated with family caregiving were a significant factor in the caregiving burden.[26] This is further explained by Kusi et al; 2020 that caregivers of women with breast cancer in low-and-middle-income countries experience significant physical and economic burdens.[27] Hospital managers need to put up Policies and programs that will provide social and financial support for these family caregivers who are caring for a patient with a critical illness sustained by healthcare technologies.
CONCLUSION AND IMPLICATIONS
This study provided understanding regarding the lived experience of family caregivers while caring for patients with critical illnesses sustained by healthcare technologies in the hospital as being Caring neglect, Psychological support, words of encouragement, Lack of confidence in nursing intervention, Hopeless situations, and financial burden while supporting patients’ wholeness. Understanding these experiences of family caregivers will help nurses and hospital managers to develop a better way of managing patients in the intensive care unit. The findings of this study can be used to suggest some implications for nursing practice and hospital management.
Nurses need to give enough education to the family caregivers on what to expect from the management that will be given to their loved ones on admission. They should avoid giving them false hope; this will prevent them from losing confidence in nursing intervention and enhance their confidence and trust in nursing intervention.
Hospital managers need to be aware of the caring neglect among family caregivers and pay more attention to the needs of family caregivers in the intensive care unit through a comprehensive health policy to accommodate their physiological needs while in the hospital to take care of their loved ones.
Hospital managers need to put up policies and programs that will provide social and financial support for the family caregivers to alleviate the identified financial burden.
Acknowledgment
The authors would like to express our gratitude to the supervisor, Dr. Chinomso Ugochukwu Nwozichi, and other lecturers in the Department of Nursing Science, Babcock University, especially my mentor, Professor Lanre Sowunmi (The Dean, Faculty of Nursing Science) for her contribution. All the respondents from the intensive care unit at the University of Benin Teaching Hospital contributed to the success of this Ph.D. Thesis. God bless you all.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Financial support and sponsorship
Nil
Conflicts of interest
There are no conflicts of interest.
Ethical considerations
The study obeyed all the rules and regulations of ethical guidelines in research and was approved by the Institutional Review Board of Babcock University ethical and research committee with approval number BUHREC628/22 dated 8th August 2022, and the University of Benin Teaching Hospital with protocol number: ADM/E22/A/VOL.V11/1411735165, dated 11th August 2022. After receiving permission from the ward manager of the intensive care unit of the hospital to collect data, a purposive sampling method was used to recruit and interview participants. Details of the study were explained to each participant before signing an informed consent form. Participants were allowed to choose the venue for the interview to guarantee confidentiality.
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