Caregivers caring for mentally disordered patients during pandemic and lockdown: A qualitative approach

Backgound: During a pandemic, it is difficult for caregivers to provide support for mental disorders in the form of care for daily tasks because of the rules for keeping distance and complete PPE (personal protective equipment). This is what makes caregivers experience caring for patients with mental disorders during a pandemic many challenges and new things that must be known. Objective: Caregivers of persons with treating mental illness in Indonesia who were affected by the COVID-19 outbreak and lockdown are the focus of this research. Methods: Twenty-five people participated in using Colaizzi’s method of phenomenology research design. NVivo12 examined data from in-depth interviews and field notes, which were gathered by purposive sampling (QSR International). Results: Stress and work overload, health worsening physical fatigue, family legacy, care for the whole person, as a means of coping, communication has become more difficult. Conclusion: As a result, we discovered something new about the impact of the COVID-19 pandemic on mental health caregivers. Caregivers of people with mental illness face difficulties in caring for patients during a pandemic, so it is important to pay attention to caregivers by making policies related to this.


Introduction
As the coronavirus illness 2019 (COVID-19) creeps over the world, healthcare delivery is being challenged [1] .By implementing massive national or city-wide lockdowns and stringent social distancing measures, this led to a significant spike in instances throughout the globe [2] .People who need long-term care, such as those who require treatment for mental illness, would face additional hurdles as a result of these efforts to contain the spread of COVID-19.
worry, and sadness are more common among those with mental illnesses, according to research.COVID-19 is more likely to affect those with the condition [3] .People who are unfamiliar with COVID-19 and its safety protocols, such as wearing a facemask, may find it difficult to adhere to them.There may also be a lack of access to health care and hospitals for those with mental health issues There is now an interruption in health care delivery due to fears that patient health outcomes may be harmed [4] .The Globe Health Organization (WHO) estimates that there are around 450 million persons with mental illnesses in the world, with a 14.4 percent prevalence of YLD [5] .Household members with schizophrenia or psychosis account for 7 percent of all Indonesian households, with the greatest frequency (11 percent) in Bali Province and the lowest (3%).In the meanwhile, 6.82 percent of East Java Province's population under the age of 15 suffers from mental or emotional illnesses.In this situation, the Mojokerto Regency's predominance is less than 5%.
Almost 30% of the global population suffers from mental disease each year.When the frequency of psychiatric disorders rises, more psychiatric patients are treated at home rather than in hospitals, which may unintentionally increase the load on their caretakers.Yet, many informal carers who assume these obligations may lack the necessary skills and expertise to provide care.Hence, mental disease would affect not just the individual with the disorder, but also those who care for them.Compared to the general population, caregivers of patients with mental illness had higher incidence of mental health disorders.While the advantages and cons of giving care are not always clear, they tend to result in high levels of caregiver stress.
The greater the severity of a person's mental illness, the more time spent caring for them, and the fact that they are female caregivers have all been linked to an increased strain on family caregivers.Even before the pandemic, there were many unmet needs of caregivers and individuals suffering from mental illnesses, including the need for more health care capacity, services tailored to the needs of persons with mental illnesses, and more affordable options.The experiences of caretakers of patients with mental problems during the COVID-19 epidemic remain mostly unknown, notwithstanding the paucity of research on the topic.Caregivers of persons with mental problems in Indonesia who were affected by the COVID-19 outbreak and lockdown are the focus of this research.During the COVID-19 epidemic, we'll be presenting their problems.
Therefore, based on the nature of qualitative research that aims to find root causes, and the fact that researchers are experts in qualitative research methodology, we decided to conduct a qualitative research to explore caregivers' experiences of caring for mental disorders during the COVID-19 pandemic.Recognizing the factors that Influencing caregivers in caring for patients can help create a safer workplace for them.

Method
This study's conclusions are supported by qualitative interview data that may be obtained from the study's corresponding author.Colaizzi's method of descriptive phenomenology is the method used for this study [6] .In his method, interviewing is the selected strategy for collecting data, which is necessary for describing an experience [7] .This method works well with a small sample size.

Participant
Caregivers were recruited from a mental health service set up by a non-governmental organization, in Mojokerto, Indonesia.Mental disorder patients registered in the database and viewed between 21 December 2020 to 21 January 2021 Purposive sampling was employed to collect data from a diverse range of socioeconomic origins, as well as severity and kind of mental illness (both caregivers and persons with disabilities).Socioeconomic status is based on a person's monthly family income.To be eligible, a caregiver must meet the following requirements: 1) Be a permanent employee; 2) Be between the ages of 20 and 75; 3) Have experience working with patients who have mental illnesses in open homes; 4) Have provided care support for more than one month.

Data collection
A total of 25 people were interviewed in semi-structured interviews between December 2020 and January 2021.Gender, diagnosis of mental problems, and the amount of present caregiver help were all obtained at the beginning of each interview.There are no substantial new results and information redundancy is attained at this phase in data collecting (i.e., at the 15th interview).As a result of the social distance, the second author performed face-to-face interviews lasting around an hour each.With the permission of the participants, audio recordings were made.Additional information was gleaned from the interviewer's notes, which included notes on the interviewee's responses and questions concerning those replies.

Ethical considerations
Things to think about from an ethical perspective, every care was taken to protect the privacy of all data and recordings.Participants' verbal informed (after being briefed on the study's aims and methodology) permission was acquired to stop the spread of the disease.At any time throughout the research, volunteers might quit without penalty.The study was greenlighted by the Lorestan Universitas Airlangga Ethics Committee.

Data analysis
Each transcript was analyzed using Colaizzi's method.The method of data analysis consisted of the following steps [8] ; (1) read all the participants' descriptions ofthe phenomenon, (2) extract significant statements that pertain directly to the phenomenon, (3) formulate meanings for each significant statement, (4) categorizing into clusters of themes and validation with the original transcript, (5) describing, (6) validate the description by returning to the participant to ask them how it compares with their experience, and (7)  incorporate any changes offered by the participant into the final description of the essence of the phenomenon.As soon as the interviews were completed, the data was put into analysis.For research purposes, the interviews were transcribed verbatim.Transcribed interviews and memoranda were analyzed using the ID guideline and inductively coded.For a systematic coding procedure, we employed initial and targeted coding methodologies.The methodical approach was further aided by the employment of a constant comparison technique.We applied our health care epistemological perspective throughout the coding process to generate themes that relate to the knowledge demands of health care practitioners.Data management and coding assistance were provided by NVivo12 (QSR International) [9] .The integrity, representativeness, analytical logic, and interpretative authority of the ID guideline's data analysis were all ensured, as was the quality (i.e.rigor) of the findings.

Trustworthiness
In order to assess the correctness and dependability of the data, the criteria of credibility, confirmability, and transferability were applied.Member check was employed following the creation of main codes.The authors forwarded the text interviews to the participants and asked them to judge whether or not the extracted codes were compatible with their viewpoints and experiences.Lastly, and when required, data interpretation was revised based on the participants' comments.Additionally, we aimed to engage a sample with maximal variability in job experience and position, as well as gender and age.We also sought to maintain reflexivity and avoid our own opinion from altering the study data by meticulously evaluating interview transcripts, comparing codes with the raw data, and checking the findings with the participants' opinions multiple times.Peer check was employed for conformability, and for this procedure, code categories were handed to three faculty members who were also competent in qualitative research for the external evaluation of the selection and categorization of codes.In term of transferability, the researcher tried for the present of the study setting and the participants' opinions with thorough information.
Caregivers from the Shelter took part in this research.The following table lists the individual characteristics of those in attendance.Based on findings from the study, six major themes emerged, including caregiver workload and stress, threats to the physical and psychological well-being of caregivers, the need of a continuing family role, holistic care, and coping strategies for caregivers.It's becoming more difficult to communicate.Increasingly vulnerable to substance abuse.
Self protection for all 5.
More vulnerable to physical and verbal violence.The patient is socially isolated.

Caregiver stress and work overload
Providing 24-hour: Providing medical assistance throughout the night and day.It is common for the mentally ill to be relieved of their caregiving obligations when they are sent to get medical treatment.Since they have to deliver lengthier therapy with less leisure time during the epidemic, When I was at home, it seemed like I was always looking after him.The physiotherapist could come to our home, and I could sit on the side and relax while he took it out for me... however I was unable to sleep due of social isolation tactics. in persons with mental health conditions.(Participant 4)

Increasingly vulnerable to substance abuse
During the pandemic, caregivers found that patients with mental problems grew more reliant on them, particularly those who were unable to leave their homes due to the epidemic.

Rehabilitative therapist: Taking up the job
Participants learned the significance of rehabilitation in the recovery of those suffering from mental diseases in addition to the everyday necessities.Caregivers aspire to expand their duties as rehabilitation therapists to make up for the lack of activity that patients might get in rehabilitation facilities.The caregivers' lack of skill and confidence in delivering rehabilitation treatment makes it difficult for them to do so.As a result, individuals suffering from mental illnesses are unwilling to participate in rehabilitation activities with them...

Self protection for all
Considering what has happened with COVID-19, caregivers are emphasizing how dangerous it is to expose persons with mental illnesses to infection.As a result, they are increasing their usage of hand sanitizers and disinfectants in order to safeguard the survivors and themselves from illness.
Due of the epidemic, I am forced to clean my home each and every day.Because he didn't show up, I had to go out and get groceries anyhow...As a result of my absence, I was obliged to tidy up upon my return.Because he is a severely mentally ill patient, this is a dangerous move.I can't infect him with my germs.I'm required to maintain vigilance at all times.(Participant 8)

More vulnerable to physical and verbal violence
Patients with mental health issues are becoming more violent as their therapy lengthens.This is a troubling trend that needs to be addressed.

Physical and psychological risks to caregivers' health worsening physical fatigue
Worsening physical fatigue: Participants' physical weariness and symptoms including swelling in their limbs and body pains worsened when their therapy was prolonged, their parental responsibilities grew, and they lacked nursing abilities.

Because my limbs were already stiff from following the exercises, it turned out that my physical condition was becoming worse from aiding him with indoor workouts all day. (Participant 9)
Psychological stress due to extra burden and COVID-19: During COVID-19, caregivers of mentally ill patients are suffering an elevated level of stress.As a result, doing maintenance activities makes them furious and irritated.For as long as possible, caregivers responded that their families will continue to provide care for their loved ones, despite the stress and hardships that this duty entails.

Taking over from my mother's caregiving duties, I've set up everything she needs right now... I want to provide her with the greatest possible care since she is a member of our family. (Participant 10)
They also emphasized the need of obtaining broad training in the treatment of mental illness as well as specific training in the delivery of mental health services.
Relying entirely on mental health or medical professionals is ineffective.They need to tell us how to do the rehabilitation exercises now, while the epidemic is still going on.(Participant 11) Family readiness to care: Health and safety goods like face masks or hand sanitizer are hard to come by for carers, making it harder to carry out their duties.

We don't have enough personal care goods on hand... Going on a run without a mask is not an option. If we don't have enough masks, we won't go outside. (Participants 13)
There aren't enough masks... Typically, each mask is reused three times.Obviously, this isn't good for your health, but there's nothing you can do about it.(Participants 21)

Care for the ehole person:
Psychopharmacology is used as a method of treatment.
Clients with mental problems were given medications in a variety of methods, according to the participants.Vitamins, sugar, food, and beverages are all ways in which vitamins may be provided to a patient, as well as medications.Because not all shelter clients with mental problems are aware of or ready to take medicine on a regular basis, this is done by the caregiver.
In this research, participants were asked about their preferred methods of administering medication.

To get Ms. D to take her medication, the medication is disguised as sugar. (Participant 24)
Communication in a therapeutic context: By stimulating emotional reactions using clear and succinct language, using proper time, relevance, and appropriate timing and relevance, participants use nonverbal therapeutic communication.Nonverbal communication strategies are often used by caregivers when interacting with patients with mental health issues.In order to establish a connection based on mutual trust, patients engage in haptic communication such as caressing, hugging, and holding hands.
"They feel more at ease and more trusting when you employ a courteous touch."(Participant 25) This verbal therapy kind was described as inviting in engaging talks, incentive, seduction to feel at home and communicating messages slowly.Therapists who work with clients on the half-way line engage in verbal therapeutic communication, such as starting conversations that pique their interest and encouraging them to go about their daily routines, while also gradually imparting religious knowledge based on the client's current circumstances.

Psychosocial therapy:
Patients must be able to re-adapt to their social environment, be able to take care of themselves, be able to be independent and not depend on others.
"I must also be able to provide psychosocial therapy so that they are able to be independent, as well as teach their families."(Participant 13)

Psychoreligious therapy:
The results of the study indicate that there is an effort to care for halfway house caregivers with psychoreligious therapy.Psychoreligious therapy treatment efforts such as five daily prayers, prayer, religious lectures, and tattoo therapy.Be able to adjust back into society and be able to take care of oneself without relying on anybody else.
As well as teaching them to be self-sufficient, I need to be able to give them with psychosocial counseling.(Participant 13)

Religion and psychotherapy:
The findings of the research show that psychoreligious counseling is being used to help halfway house caretakers.Five daily prayers, prayer, religious lectures, and tattoo therapy are examples of psychoreligious therapy.

"We accept patients with mental illnesses as members of our family, and we treat those with mental illnesses as friends." (Participants 6 and 10)
"humanizing people" is how we pay attention.(Participants 5 and 7) As a means of coping: Acknowledging and accepting one's position.
Making peace is one of the coping methods employed by carers when confronted with difficulties in caring for patients with mental problems.

What happens when we encounter problems in treating mental illness patients? "We attempt to accept the circumstance and move on." (Participant 5)
Praying: Praying with the salah of istighfar, Al Fatihah, and dhikr, as well as reflecting on the events that have transpired, are other methods of adaptive coping.

A common coping mechanism used by mental health professionals who work in Islamic boarding schools is the practice of prayer. (Participant 9)
It is said that the kiai said thus.
When he was at the Islamic boarding school, the kyai gave him guidance, and he remembered the nursing pledge that had been recited, and he vowed to serve Allah SWT.

Every time I think of what the kiai said about us all doing everything for Allah's sake, I smile. the second person
If a client fails to fulfill her responsibility as a caregiver, we recall the nurse's vow she made when she graduated from nursing school, therefore there is a sense of remorse.(Participant 3) Assistive devices: Wives, psychiatrists, and carers are common resources for those who need help coping with their mental illness.
"I generally inform someone who is regarded competent of offering answers and assistance about the challenges and difficulties I'm having throughout therapy."(Participant 1) The caregiver's coping mechanism was also revealed in this study: avoidance.
The best thing to do if I'm uncomfortable with a customer is to leave and not reply to them."(Participant 4)

Communication is getting harder.
There is no good feedback from clients.
Someone with a mental disorder will be very difficult to communicate with if the patient is in an unstable condition, especially when the patient lacks communication due to restrictions on meeting people.So they will remain in their previous state.

"…I try to always invite communication, but since the pandemic and rarely meet people for communication, it makes it difficult for them to provide feedback when communicating." (Participant 2)
There is social isolation in the patient.
The condition alone in the room causes the patient to be affected by his own thoughts, especially the patient who has not been able to control his mind and himself.Outside activities are starting to be limited and meetings with fellow patients are also limited, making all of this difficult.

"….I feel for myself how difficult it is to treat mental disorders during a pandemic, because treatment with drugs is not enough, but socialization is very helpful." (Participant 3)
Communication has become more difficult.
Clients have provided nothing but negative reviews.
When a patient with a mental illness is in an unstable state and unable to speak as a result of social restraints, communication may be very challenging.As a result, they will stay unchanged.

Since the epidemic and seeing people seldom makes it harder for them to offer feedback while conversing, I aim to constantly welcome conversation. (Participant 2)
The patient is socially isolated.
In the isolation of the chamber, the patient is vulnerable to the influence of his own ideas, particularly if he has lost control of his mind and his own identity.All of this is becoming more difficult due to the fact that my options for extracurricular activities and socializing with other patients are becoming more restricted.
It's tough to treat mental problems during a pandemic since medication alone isn't adequate, although socializing may be quite beneficial..." (Participant 3)

Discussion
In the COVID-19 pandemic, we identified the experiences of caregivers of mental illness and classified these experiences into six themes: the difficulty of care services, the burden of caregiving, the threat to caregivers' physical and psychological well-being, and the necessity of continuing in a nurturing role for mental survivors.Caregivers of people with mental illnesses are feeling the physical toll of the COVID-19 epidemic [10] .There will be a rise in the number of individuals who are dependent on others for their well-being because of the closure of Hong Kong's rehabilitation and child care facilities.Because of social isolation and working from home, participants are forced to spend more time caring for their family members, which has a negative impact on their health [11] .Caregiver burnout is more likely in pandemics because of the longer hours lone carers and those who live with individuals they care for must put in to keep up with the rising demands of care in their homes and workplaces.When caring for persons with mental illnesses during the COVID-19 pandemic, participants reported worsening physical health and weariness, thus they were unable to take a vacation from their mounting parental tasks [12] .
Persons with mental problems and people with numerous comorbidities are more vulnerable to COVID-19 infection, which means that caretakers feel forced to participate in Hygiene procedures like cleaning and sanitizing the surroundings more often.During the epidemic, participants' psychological well-being and emotional strain both improved [5] .The COVID-19 epidemic has exacerbated the burden of mental illness caretakers, leaving them at greater risk for anxiety and despair.Participants' worries regarding infection and transmission of COVID-19 were comparable to those raised in earlier research, as were those concerning unemployment, decreased income, and increased expenditure on personal hygiene items [13] .When patients are supported, their stress levels decrease, as well as the likelihood of being abused by their caregivers.Social distancing measures have isolated study participants and reduced the support they receive from their social support network, contributing to increased stress [14] .Participants in this study previously had the opportunity to take a break from parenting duties and relieve stress by meeting with family and friends [15] .
Harassment is on the rise, according to this report, which points to a potentially dangerous trend.It has been found that patients' vulnerability to abuse by caregivers is exacerbated during a pandemic by social isolation, increased patient reliance, and time demands, as reported by participants in this research [16] .During quarantine, economic and familial constraints might raise the risk of aggressiveness and domestic violence [17] .
Findings from a recent study also indicate that persons with mental problems have been mistreated in the past, which has contributed to the present crisis [18] .It was clear to the caretakers that they wanted to continue their work with mentally ill patients as a means of repaying what they had gained from the surviving.This is in line with prior research, which showed that caregivers continued to play a nurturing role even when their own health declined.When making judgments on how to care for one's family, Indonesian traditional culture stresses the importance of community interests and filial piety ideals, which will play an important role in the future.In this case, the decision to step down from the parental role would be perceived as a deviance from the spouse's expectations.An individual's ability and resilience are predicted to be exceeded and burdened by external and internal pressures and demands, which necessitates the use of coping strategies to manage and control these pressures.Adaptive coping mechanisms were found in this research among carers.The findings of this research suggest that caregivers use adaptive coping techniques when confronted with difficulties in providing care for patients suffering from mental illnesses.Caregivers who find it challenging to provide care for patients with mental illnesses strive to accept their predicament.This is done in order to relieve caretakers of the stress and weight of their labor.Studies show that carers' feelings of burden may influence many elements of everyday living, including their own well-being.
Caregivers use deliberations and talks as a way to cope with the stress of caring for a loved one.The halfway house caretakers commonly have their discussions face to face or through WhatsApp group chat.Caregivers' talks and deliberations are essential if they are not to become a burden on the caregiver while caring for patients with mental illnesses, which in turn has a negative impact on the caregiver's well-being.Islamic coping strategies include uttering al Fatihah, dhikr or dhikr, and learning from past occurrences.
Religious coping has been shown to impact people's ability to think creatively about challenging circumstances, according to study [13] .Adaptive coping mechanisms for caregivers with mental health issues include prayer, which some have received rudimentary training in Islamic boarding schools.Adaptive coping mechanisms, such as focusing on the good aspects in life, were often noted by the participants in this research.Insisting on the wisdom of the kyai at the Islamic boarding school, recalling the nurse's pledge of service, and returning the matter to God Almighty with the intention of doing my task for the glory of Allah SWT.According to the book of Al-Quran Surah Yusuf verse 86 of the Al-Quran, additional studies find spiritual coping mechanisms such as surrendering and returning all of their troubles to God [19] .
Researchers found evidence of an adaptive coping strategy including the use of outside assistance.During therapy, the caregiver will share the challenges and difficulties they are experiencing with a person they believe can help them [20] .So that the issue may be remedied quickly and not put further strain on the caregiver, this method is being used.Seeking social assistance for caregivers with mental illnesses may minimize the likelihood of mental health issues and lower the amount of felt load [21] .
The findings of this research show that caregivers have difficulty communicating with their patients.Serious mental diseases are characterized by a wide range of symptoms and/or considerable behavioral abnormalities, and they might make it difficult for a person to carry out their daily activities [15] .Disruption in social relations caused by positive and negative symptoms in schizophrenia patients need rapid intervention in order to prevent self-isolation.Emotional abnormalities in patients with mental illnesses are shown via affect and mood.If you look at your face, you can tell how you're feeling.Efforts have been made to limit the potential for researcher bias.One such effort is to confine the perspective and previous knowledge of the researcher on the subject.To ensure the credibility of the data collected, the two researchers in the study reviewed the life experience descriptions as suggested.This is done as a data validity check [1] .To address auditability, tape recorders were used and researchers reviewed transcripts and cross-referenced field notes.In addition, transcripts are transcribed verbatim by a secretary to ensure they are free from bias [22] .Also, data analysis and life experience descriptions were reviewed by an independent jury with phenomenological experience to ensure intersubjective agreement.All reported themes were approved by the jury.Finally, the researcher validates the description by returning to participants to ask them how it compares to their experiences and incorporate any changes offered by participants into the final description of the essence of the phenomenon.This final description was reviewed by other researchers who were not part of the study to ensure suitability.

Conclussion
During the COVID-19 pandemic, we were able to collect data that no one else had, and we believe our findings are the first of their kind.In the midst of a pandemic, caregivers of patients with mental disorders have challenges caring for their patients, risking their own well-being as well as the relationship between caregivers and patients with mental disorders.There are now holes in their understanding of mental illness treatment and rehabilitation due to the shutdown of official support services, and they urgently need vital tools to protect themselves from COVID-19.The difficulty of care services, the burden of caregiving, the threat to caregivers' physical and psychological well-being, and the necessity of continuing in a nurturing role for mental survivors.Support for caregivers is an absolute necessity if we are to reduce the impact of the epidemic on them and maintain their role as caregivers.

I
'm compelled to be right there at his side.When I'm extremely enraged, I'll chastise him and even attempt to slap him with my hand.Before the epidemic, it didn't happen as often.(Participant 17) Today, there are more and more disputes.Having shared a home with him for a considerable period of time, it was inevitable....I'll criticize him and become upset at him [if he doesn't reply to my request]... Surely, this is occurring more often these days.(Participants 23)

[
During the epidemic] I'm sure I must have felt down.I wanted to assist him, but I was unable to do so.Even if it's for his own benefit, he refuses to accept [my assistance].(Participant 5)...I'm running out of time to relax... I'm a bit scared and concerned about having to stay at his side right now.For caretakers, the pandemic presents difficult living scenarios, including the fear of infection and feelings of social isolation as a result of a lack of social interaction.(Participant 1)I'm worried about getting sick because I'm under a lot of stress... (Participant 15)If anything occurred to me, and I couldn't care for the patient, that made me even more nervous.Affecting my social life (Participant 13)On Sundays, I used to go out to lunch at a restaurant with a group of people and relax for a little while, but now I spend the whole day treating patients within... It's upsetting.(Participant 16)Family legacy: Improve education on treatment and recovery.

"
We treat clients with mental disorders like family and treat clients with mental disorders like friends."(Participants 6 and 10).

Table 1 .
Characteristics of participants.