A Qualitative Study on What It Means for Patients with Schizophrenia Living in the Community to Remain on Medication ()
1. Introduction
According to the Ministry of Health, Labor, and Welfare’s data’s on mental health and social welfare (2019), as of 2017, the total number of patients with mental illness in Japan was approximately 4,193,000, of which about 302,000 were inpatients and 3,891,000 were outpatients. Among them, the number of patients with schizophrenia was 639,000, accounting for approximately 154,000 or 47% of the total number of inpatients, the largest proportion. As Japan has been implementing measures of mental health and social welfare to shift from a medical system centered on inpatient care to a system centered on community life of patients, the average length of hospital stay of patients with mental illness has decreased from approximately 301 days as of 2010 to approximately 266 days as of 2019 [1].
Nakane (2005) investigated the prognosis of patients with schizophrenia who were discharged and found that approximately 30% of the patients were discharged in remission from the hospital. Other patients were discharged with some residual psychiatric symptoms; while these were not in complete remission, they could still live in society [2]. The average number of days of patients’ community life after discharge was approximately 307 days as of 2016, with readmission rates of 23% at 3 months’ post-discharge, 30% at 6 months’ post-discharge, and 37% at 12 months’ post-discharge [1].
The figures above show an inconsistency in the recovery of patients discharged from the hospital and living in the community. Therefore, in the treatment and nursing care of schizophrenia, it is important to include help to patients to live their lives in the community while ensuring the prevention of the relapse of their symptoms.
According to the existing literature, it is extremely important for patients with schizophrenia to continue taking antipsychotic drugs to have a peaceful community life, because these drugs are effective in reducing positive symptoms and preventing relapse of symptoms. For this reason, health care providers implement practices to increase patients’ compliance with antipsychotic drugs and knowledge of antipsychotic drug efficacy starting from patients’ hospital stay period. The results of these practices have been widely reported, as shown below.
In a study by Shiotani et al. (2004), as a result of the abovementioned practices, eight of ten schizophrenia patients’ anxiety regarding their medications had reduced, leading to their increased knowledge of medications; among these, two patients stated that “I only take it when I don’t feel well” and that “it is poisonous to the body to take medicine for too long,” respectively [3]. In a study by Ishida et al. (2008), 33 patients (86.8%) found the medication useful, and 23 patients (60.5%) stated that they would continue taking the medication after being discharged. Meanwhile, 14 patients (36.8%) thought that there were demerits from taking the medication, with thoughts such as “I do not take that because my disease is cured,” “I want to try to see if I can be cured without taking it,” and “You cannot say the condition becomes better when you are still taking medicines” [4]. Imai (2008) found that some patients with schizophrenia who were instructed to take their medications continued feeling ambivalent, stating “It seems that I will need the medications until I die, but I would stop taking them if I could” [5].
The previous studies mentioned above seem to suggest that some patients with schizophrenia continue taking antipsychotic drugs while having feeling mixed feelings about it, and do not easily accept medication adherence. The fact that schizophrenia patients “stay on medication” may not solely be the result of gaining illness awareness or of improving compliance with their medication, but may be the result of a process in which patients accept to continue taking antipsychotic drugs for various reasons as they carry on with their daily lives.
Therefore, we conducted a literature review to determine the findings of previous studies regarding the attitude/motivations of patients with schizophrenia when it comes to taking antipsychotic drugs. We found that patients with schizophrenia expressed their opinions in relation to “discontinuing medication,” “resuming medication,” and “becoming adherent to medication” [6] - [15]. The findings indicate that when it comes to consuming antipsychotic drugs, the patients investigated in different studies had the following in common, even though their backgrounds and circumstances differed: almost losing one’s identity due to the side effects of the medication, discontinuing medication when they thought they had recovered, and feeling the need to take antipsychotic drugs upon readmission. Furthermore, patients with schizophrenia were found to be aware of and learning from the need for medication to maintain the relationships with the people they interacted with in the community.
However, little is known about what such patients’ experience of “taking antipsychotic drugs” signifies in their lives, nor how they become adherent to antipsychotic drugs, which they could not do before.
Therefore, we believed that it would be important to analyze the narratives of patients to understand what it signifies for them to consume antipsychotic drugs to continue living in the community.
2. Aims
This study aims to identify what it means for patients with schizophrenia living in the community to remain on medication.
3. Method
In this study, we used participants’ narratives as data’s and analyzed them according to the methods described in “An Application of Phenomenological Method in Psychology” (1975) [16] by Giorgi, an American phenomenological psychologist, and “Practice of analyzing materials describing experiences” (2004) [17]. Giorgi (1975) stated that the subjects’ narratives contain their experiences and perceptions in their daily lives, as well as their backgrounds and circumstances. By analyzing these descriptions in the narratives, Giorgi (1975) attempted to clarify how the participants’ awareness or their way of doing/being led to their making a decision [16].
We considered Giorgi’s phenomenological method to be the most appropriate for this study, as it reveals participants’ perception and the way of doing/being that was hidden and difficult to make explicit.
3.1. Participants
The selection criteria for participants were as follows:
1) A patient who could not continue taking antipsychotic drugs in the past and was admitted or readmitted to a psychiatric hospital, and has been ill for more than 10 years.
2) A patient who received inpatient treatment in the past is currently encouraged to continue taking the medication during regular outpatient visits, and has been taking the medication on their own volition for at least 1 year.
3) A patient with schizophrenia from early adulthood to late adulthood (around 30 to 55 years of age) who has been taking antipsychotic drugs with chlorpromazine equivalent of 500 mg to 1200 mg and has managed to live in the community for at least 1 year.
4) A patient with schizophrenia who has been determined by the attending doctor to be able to recount their own experiences related to taking antipsychotic drugs.
Patients in (5) and (6) below are excluded from participants.
5) A patient whose attending doctor is concerned that the patient talking about their own experiences related to antipsychotic drugs may worsen their mental condition.
6) A patient who has been determined to have insufficient decision-making capacity in narrating their story, or a patient with the hebephrenic type of schizophrenia, which is considered to develop during the ego formation period around the age of 16.
3.2. Data Collection Method
Interview dates, times, and locations requested by the participants were identified and decided upon after coordinated communication. Interviews were conducted in locations where privacy was ensured. At the beginning of the interview, the participants were first asked to complete a form including sociodemographic attributes, such as gender and age. The interviews were recorded on an IC recorder and written in memos with the participants’ consent. Semi-structured interviews were conducted. While the researchers prepared a list of questions, they also asked additional questions based on the flow of the conversation. Each participant’s interview was scheduled for approximately 40 minutes. When the interview seemed to exceed the scheduled time, the participant was asked whether it would be acceptable to extend the time originally agreed upon by them.
The participants were first asked to talk about their community life freely; subsequently, the interview gradually included the following questions to draw out their narratives related to medication in their daily life experiences: 1) “How do you feel about the difficulties in your life?” 2) “Do you feel you have someone who supports you?” or 3) “You continue taking medication now. Did you have any episode that led you to continue taking medication?”
3.3. Analysis Methodology
In this study, we used participants’ narratives as data’s and analyzed them according to the procedures described in “An Application of Phenomenological Method in Psychology” (Giorgi, 1975) [16], and “Practice of analyzing materials describing experiences” (2004) [17]. Throughout the entire analysis process, the researchers—currently working as faculty in mental health and psychiatric nursing—focused on the participants’ narratives, ensuring to exert conscious efforts to include as few biases as possible in interpreting the narratives (Giorgi, 1975) [16].
The following steps were undertaken in the analysis; the analysis was performed for each participant.
1) Step 1
Transcriptions (hereinafter referred to as “source materials”) were prepared from the participants’ narratives. Original texts were read through several times to grasp the overall meaning of the source materials. Subsequently, the source materials were read through again from the beginning, and the contents were categorized by semantic cohesion to construct semantic units.
2) Step 2
Among the constructed semantic units, only the units that were related to the participants’ medication adherence were retained.
3) Step 3
For each semantic unit constructed in Step 2, subjects were rewritten as a neutralized subject “S” (the initial of Subject), reflecting the participants’ changes in thoughts. This step changes original semantic units per the intentions on the left, which is called free imaginative variation (Giorgi, 2004) [17].
4) Step 4
After the free imaginative variation was conducted on each description in Step 3, the psychological meaning related to “what it means for patients with schizophrenia living in the community to remain on medication” was read for each semantic unit. Semantic units that could not be read were left as they were, stopping the analysis procedure at the stage of free imaginative variation.
5) Step 5
Each psychological meaning by semantic unit read in Step 4 was arrayed in a chronological order.
6) Step 6
The psychological meanings arrayed in Step 5 were repeatedly read to grasp the entire meaning, to read what the third party will discern regarding the participants’ medication adherence as the essential structure.
4. Definition of Terms
Psychological meaning: A person’s awareness or behavior that is important to that person in forming the new way of doing/being in that individual’s journey, as read by researcher.
Essential structure: The mechanism by which diverse psychological meanings for the person overlap, to make it possible for them to continue taking the medication.
5. Ensuring Reliability and Validity
It was important for this study to be as faithful as possible to the facts of the participants’ narratives to clarify what really occurs, without being constrained by the researchers’ subjectivity or bias. To this end, the process of analysis from Steps 1-6 was conducted by repeatedly reviewing the source materials and the converted data’s, and by proceeding step by step under the supervision of a researcher specializing in mental health and psychiatric nursing, in an effort to avoid arbitrary bias in the interpretation.
6. Ethical Considerations
The human material or human data were performed in accordance with the Declaration of Helsinki. The study was commenced with the approval of Osaka Medical and Pharmaceutical University Ethics Review Committee (No. 2020-236-2).
6.1. Participants
The participants were residents of communities, who had been discharged from a psychiatric hospital, but were currently visiting a private psychiatric hospital. Their consent for their participation in the study was obtained from themselves, their attending doctors, and the hospital directors.
6.2. Discretion to Participate in the Study and Withdrawal of Consent to Participate in the Study
The participants were informed that their participation would be voluntary, that they were free to reject to participate or withdraw from the study at any time, and that participating in the study would not affect their treatment or care they receive in any way, or impact their relationship with the hospitals in any way.
6.3. Privacy Protection
The participants were informed that their personal information obtained in the course of this study would be protected, that the study data’s would be compiled in a generalized form that would not identify any particular individual, and that their anonymity would be maintained, including in the study products.
6.4. Protection of Personal Information
Raw data’s acquired using IC recorders were stored securely in a locked cabinet in a graduate student’s office in the facility of the researchers’ affiliated university. A lockable room was used to facilitate the transcription. All proper nouns in all materials and data’s related to the study were anonymized and pseudonymized by replacing them with initials and unrelated alphabetic characters such that individuals could not be identified. After publishing the study, the digitized data’s will be stored for 10 years after organizing and managing the dates and metadata’s and creating appropriate backups. Paper materials will also be stored for 10 years. After 10 years of storage, paper and other data’s and materials will be shredded, and USB and other electronic media will be crushed and then discarded.
7. Results
Among the five participants (A, B, C, D, E), the longest narrative interview lasted for approximately 44 minutes, and the shortest for roughly 18 minutes; the average narrative interview period was approximately 31 minutes (Table 1).
Figure 1-5 show the process of analysis for each of the above participants to read the psychological meaning and essential structure of their medication adherence to continue their community life from their narratives. The first column includes the description of each semantic unit that was discussed in relation to their medication adherence. The second column includes the description of free imaginative variation, which was structured into contents that showed their changes in thoughts by changing the subjects to neutralized subjects for each semantic unit. The third column includes the description of the psychological meanings read from the description of free imaginative variation. The fourth column includes the chronologically arrayed description of the above-mentioned psychological meanings. The final fifth column shows the essential structure of the mechanism that makes the participants’ medication adherence possible, which is visible to the third party from the overall psychological meanings arrayed in the chronological order.
7.1. Psychological Meaning and Essential Structure of Participant A to Continue Taking Medication to Continue Living in the Community
The following is a chronological sequence of psychological meaning read from Participant A’s narrative: 1) “When Subject (below, S) was initially prescribed the drug, S thought S should not take it.” 2) “These days, S does not think people are coming to kill S anymore.” 3) “S still does not want to take drugs if possible.” 4) “S’s doctor has told S that it is impossible to reduce S’s medication any further.” 5) “S’s family is telling S that S needs to take S medicine.” 6) “S feels that S has someone who cares about S, such as the home care nurse.” 7) “S’s sister manages most of S current daily life.”
From the entirety of 1) to 7) above, the essential structure of Participant A to continue taking medication could be read as follows: “The drug may be effective, but S still wants to take it as little as possible. Meanwhile, S has people who care about S and a person who S can rely on nearby, to manage S’s life. The people above tell S to take medicine, and S takes it (Figure 1).”
7.2. Psychological Meaning and Essential Structure of Participant B to Continue Taking Medication to Continue Living in the Community
The following is a chronological sequence of psychological meaning read from Participant B’s narrative: 1) “S finds it hard to walk these days.” 2) “S feels that S has a doctor who cares about S’s condition of foot.” 3) “S has a mother who takes care of S and recommends a way for S to take the drugs.” 4) “S does not know what medications S is taking right now.” 5) “S says, taking medicine is for living.”
From the entirety of 1) to 5) above, the essential structure of Participant B to continue taking medication could be read as follows: “S does not know what kind of medication S is consuming, but recently S has been having a hard time walking; S has people who care for S’s foot and look after S. S thinks taking medicine is for living (Figure 2).”
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Figure 1. The psychological meaning and essential structure of research participant A continuing to take medication in order to continue living in the community.
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Figure 2. The psychological meaning and essential structure of research participant B continuing to take medication in order to continue living in the community.
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Figure 3. The psychological meaning and essential structure of research participant C continuing to take medication in order to continue living in the community.
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Figure 4. The psychological meaning and essential structure of research participant D continuing to take medication in order to continue living in the community.
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Figure 5. The psychological meaning and essential structure of research participant E continuing to take medication in order to continue living in the community.
7.3. Psychological Meaning and Essential Structure of Participant C to Continue Taking Medication to Continue Living in the Community
The following is a chronological sequence of psychological meaning read from Participant C’s narrative: 1) “In the beginning, S did not feel the effects of the drugs.” 2) “When S did not use the medicine, the symptoms came back. S thinks it is bad if S does not take medicine properly.” 3) “S met a doctor who passionately recommended taking medication.” 4) “S does not feel some of the medications are effective, but S thinks S needs to keep taking them until the doctor says S can stop.” 5) “S continues seeing a doctor in charge and taking antipsychotic drugs, to ensure that S does not forget to take medications.”
From the entirety of 1) to 5) above, the essential structure of Participant C to continue taking medication could be read as follows: “S feel some drugs is ineffective. However, S met some people S could trust who passionately recommended the medication to S. S started being careful in remembering to take it (Figure 3).”
7.4. Psychological Meaning and Essential Structure of Participant D to Continue Taking Medication to Continue Living in the Community
The following is a chronological sequence of psychological meaning read from Participant D’s narrative: 1) “S has been living in the community for several years, doing S’s own chores every day.” 2) “It is easier to spend time at the day care center now that S can interact with other people.” 3) “S does not think antipsychotic drugs are necessary for S.” 4) “Talking with the home care nurse about S’s life, whether S has gone out somewhere or whether S has done S’s chores, encourages S to continue with S’s daily life.” 5) “S takes the medicine because the doctor offers it to S; S thinks S has no choice but to take the medicine.”
From the entirety of 1) to 5) above, the essential structure of Participant D to continue taking medication could be read as follows: “S does not think drugs are necessary for S, but S can interact with people and spend S’s days. S has people who accept S as S is. S continues living in the community while taking medicine that a doctor offers (Figure 4).”
7.5. Psychological Meaning and Essential Structure of Participant E to Continue Taking Medication to Continue Living in the Community
The following is a chronological sequence of psychological meaning read from Participant E’s narrative: 1) “At first S was skeptical about the drug’s effectiveness.” 2) “Once S thought S recovered and stopped the medication, S had the same symptoms as before; hence, S figured S could not stop the medication.” 3) “S was still skeptical about the effectiveness of the medicine, but S’s mother told S to take it anyway as it would be lucky if S got well.” 4) “S felt anxious because if S stopped taking the medication, S might return to S’s old condition.” 5) “S thinks that it will be a lucky thing if S just takes the medicine and get well.”
From the entirety of 1) to 5) above, the essential structure of Participant E to continue medication could be read as follows: “S was skeptical about the drugs. However, S has a person S can trust, who recommended a way to take the medication in a way that S does not feel overwhelmed. S thinks that it may be a good idea to take it (Figure 5).”
8. Discussion
Through the involvement with people who “manage,” “care about,” “care for,” “accept,” “passionately recommend,” and “recommend a way to take the medication such that S does not feel overwhelmed,” the participants showed a change in their thoughts.
Generalized reading of the structure common to the aforementioned five essential structures reveals a structure that includes the following three opportunities: 1) Patients realize the importance of people. 2) They sometimes entrust themselves to people or follow the opinions of these people regarding taking actions. 3) They have come to terms with their initial negative feelings about antipsychotic drugs and, since then, have continued taking antipsychotic drugs (Figure 6).
In the following section, we discuss patients with schizophrenia living in the community continually taking medication for each of the above three opportunities: 1) “feeling the importance of people in the community,” 2) “the willingness to entrust themselves to people and to let these people’s opinions guide them in making actions,” and 3) “coming to terms with negative feelings about antipsychotic drugs.”
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Figure 6. Five essential structures and their generalizations.
8.1. Feeling the Importance of People in the Community
Why do participants who continue living in the community talk about people who care about them as close, reliable, and trustworthy?
In a study of people with schizophrenia who experienced auditory hallucinations living in the community, Ninomiya et al. (2005) found that some people were healed by having someone they could trust to understand their feelings, such as “I was healed by a friend who noticed my pain,” and that the presence of people itself provided emotional support and helped them to lead mentally stable lives [18]. Okamoto (2020) suggested that recovery might be facilitated by schizophrenia patients’ perception of emotional support from people, including professionals of mental health and social welfare and social relationships [19].
From the perspective of these previous studies, the experience of feeling the care, concern, and acceptance from people may encourage participants to continue their community life and feel secure knowing that they are being looked after.
8.2. Their Willingness to Entrust Themselves to People and to Let People’s Opinions Guide Them
How were participants who continue living in the community willing to entrust themselves to people and to let people’s opinions guide them in making actions?
Nakai (2011) described the importance of understanding mental health and the abilities involved in maintaining mental health [20]. These abilities include the “ability to not be stubborn” and the “ability to resist the feeling of I have to” that allows you to forgive yourself by saying “Well, that is okay,” rather than always seeking perfection. Nakai also stated that when the state of mental health is generally good and smooth, the distinction between ego and the outside world—self and people—is not an issue, and you feel secure.
The study participants may have felt that it was acceptable to entrust themselves to people, rather than feeling that they had to do everything on their own; they may have built this trust through interactions with people who cared about them, who were close to them, who they could rely on, and who they could trust to manage their daily lives and take care of them. This may have led to a change in the participants’ thoughts, developing their willingness to entrust themselves to people and let people’s opinions guide them as an easy way to harmonize with their surroundings.
8.3. Coming to Terms with Negative Feelings about Antipsychotic Drugs
Why do participants who continue living in the community continue taking their medication despite their initial negative feelings about antipsychotic drugs?
Watanabe et al. (2014) stated that in the process of transforming the self-concept of people with mental disabilities, “examining their problems among members who are trying to understand them makes it easier for them to face their own issues and leads to a subsequent transformation of their self-concept” [21].
Although participants may initially have negative feelings about antipsychotic drugs, they may be willing to take them to continue their community life in the presence of people who care about them, are concerned for them, and accept them.
It may be easy for participants to accept the abovementioned passionate recommendation for medications or ways to take medications such that they do not feel overwhelmed from people in whom they have placed their trust.
Tai et al. (2014) studied the usefulness of utilizing the concept of self-management in nursing assistance and research with patients with schizophrenia. They defined self-management for patients with schizophrenia as “a process in which the patient engages in a decision-making process to address issues that arise in daily life, not limited to disease management, to live better despite the chronic symptoms and disabilities caused by the disease” [22].
We believe that the participants in this study who continue living in the community have come to terms with their negative feelings about antipsychotic drugs; they have accomplished this by deciding to entrust themselves to people or by letting people’s opinions guide them, subsequently deciding to take antipsychotic drugs to maintain their current daily lives.
8.4. Implications for Nursing Care from This Study’s Results
1) Attitude of supporters as patients with schizophrenia continue living in the community.
Shiomi (2016) indicated the importance of caring attitude for people with mental disorders, suggesting the importance of “understanding the pathological characteristics of mental disorders and accepting their pain” and “an attitude that respects the independence of people with mental disorders” [23]. Ohtake et al. (2006) stated, “When supporters respect the strengths and wills of patients, the patients are able to adopt their own wishes and intentions and set the pace of life that they desire” [24].
The participants spoke of people they interact with as they continue living in the community as “concerned about me,” “caring and looking after me,” “close and comfortable with me,” “trustworthy,” and “accepting me just as I am.”
Therefore, regarding the attitude of supporters as the patients continue living in the community, we believe that it is important to accept the current situation of the patients with schizophrenia, to lend encouragement to—and be compassionate for—the patients, and to be on the side of the patients.
2) Involvement with patients as they continue to live in the com-munity.
Why did participants who continue living in the community talk about how passionately they were encouraged to take their medications and how they were encouraged to take their medications to ensure that they take their medications without feeling overwhelmed?
Kayama (2017) described the power of words in psychiatric nursing practice and stated that nurses are the ones who can work with (and ask questions) patients to elicit responses [25]. Kayama also stated that “People entrust themselves to those who trust their words, listen to them carefully, and do not laugh at them. Patients recognize those people as someone to whom they can entrust themselves.” Kayama indicated the importance of drawing out words carefully, taking them down carefully, and asking questions [25].
We believe that the participants could understand the feelings of people who were seriously concerned about them, along with the words that passionately recommended them to take medications. We believe that the patients may have felt encouraged to take their medications in a way that they did not feel forced to do so, and that their wishes were valued rather than the medications being imposed upon them.
Based on this, when considering patients with schizophrenia as they continue living in the community, we believe that it is important for supporters to be a person to whom the patients can safely disclose their feelings as they continue living in the community, and to support the patients’ decisions while asking them questions in words that lend serious consideration to their decision-making.
In the future, we would like to increase the number of subjects and improve the validity of the study.
9. Conclusions
This study investigated what it means for patients with schizophrenia living in the community to continue taking medication. Based on the analysis of the narratives of each of the five participants, the essential structure was read from the perspective of a third party regarding participants’ medication adherence.
A generalized reading of the structure common to the above five essential structures reveals a structure that includes the following three opportunities: 1) Patients realize the importance of people; 2) They sometimes entrust themselves to people or follow people’s opinions when taking actions; 3) They have come to terms with their initial negative feelings about antipsychotic drugs, subsequently continuing to take antipsychotic drugs.
This suggests that the following are important attitudes of supporters of patients with schizophrenia who continue to live in the community: To accept what is happening to the patients, to talk to them with encouragement and compassion, and to be there for them. The study also suggests that it is important for supporters to make patients feel comfortable in opening up while the patients reside in the community, and to support patients in making decisions by showing that they take the patients’ decisions seriously.
Acknowledgements
This study was accomplished with the cooperation and support of several people. We would like to express our sincere gratitude to all the participants for their willingness to participate in this study. We would also like to thank the hospital directors and hospital staff members for providing interview rooms and coordinating the participants for setting up interviews to facilitate our data’s collection process. We would also like to express our gratitude to instructors who have guided us from the very beginning of the research project. There is not any funding support in this article.