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Abstract
Objectives To explore the factors influencing medication adherence and the medication needs of patients with schizophrenia when living in a community in China.
Design A qualitative study.
Setting Community and psychiatric ward in Zhuhai city, Guangdong province.
Participants Patients with schizophrenia and (or) their primary caregivers.
Primary and secondary outcome measures Facilitators and barriers of medication adherence and the medication needs.
Results A total of 20 patients with schizophrenia and 12 primary caregivers participated in the study. Based on the Health Ecology Model, the analysis identified four levels of factors influencing medication adherence, categorised as individual (facilitators: effective treatment, positive expectation, establishing a routine and assistive tools; barriers: side effects, inadequate knowledge, forgetfulness and irregular daily schedule), interpersonal (facilitators: caregiver assistance and psychiatrist’s recommendation; barriers: lack of social support), community (facilitators: community mental health services and reducing medication use frequency; barriers: limited medication accessibility and affordability) and policy and culture related (facilitators: collectivist culture and social security policy; barriers: stigma). Additionally, five medication needs (managing side effects, applying for social security, improving medication accessibility, transitioning to long-acting injections and getting health education) were recognised.
Conclusions These findings offer valuable insights for healthcare providers and policymakers, underscoring the need for targeted interventions to enhance medication adherence among patients with schizophrenia in China.
- Medication Adherence
- China
- Mental Health
- Qualitative Research
- Schizophrenia & psychotic disorders
Data availability statement
Data are available upon reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
This study employed semistructured interviews to gather in-depth insights from participants.
This study involved patients with schizophrenia and their primary caregivers and was conducted in various settings, including community and psychiatric wards.
The use of the Health Ecology Model provided a comprehensive framework for analysing influencing factors of medication adherence.
This study did not include long-term hospitalised patients and had a relatively small sample size, necessitating caution when extrapolating results.
Introduction
Schizophrenia contributes significantly to the disease burden.1–3 According to the Global Burden of Disease Study 2021, the Disability Adjusted Life Year (DALY) for schizophrenia worldwide in 2021 was 187.76 per 100 000 person-years, accounting for 0.51% of the total disease burden. In China, the disease burden of schizophrenia is notably higher than the global average, with a DALY of 242.2 per 100 000 person-years in 2021, representing 0.86% of the total disease burden.3
To manage the treatment of patients with schizophrenia, various countries have implemented specific measures. In developed countries and regions, acute inpatient wards, day hospitals and active community therapy offer a variety of community treatment services for patients with schizophrenia.4–6 In China, the Central Government launched the Management and Treatment of Severe Mental Diseases (Project 686) in 2004, providing subsidies to local health funds.7 Since 2009, the management of severe mental disorders has been integrated into the national basic public health services.8 In addition, a series of social security measures such as outpatient special diseases and disability subsidies have been introduced to guarantee the treatment of patients with schizophrenia.9–12
Schizophrenia requires long-term or even lifelong medication; however, poor medication adherence is a widespread issue among patients with the condition worldwide. A meta-analysis found that the rates of medication adherence among patients with schizophrenia were 47% in Africa, 38% in North America and 42% in Europe.13 In China, a multicentre study indicated that 57.9% of patients with schizophrenia exhibited medication adherence 1 year after being discharged from the hospital, using the criterion of failing to take prescribed medication for less than 1 week as medication adherence.14 Additionally, based on data from a provincial information management system for severe mental disorders, which defined medication compliance as ‘regular medication’ in community follow-up records at≥80%, the analysis revealed that among 192 099 patients with schizophrenia, the rate of antipsychotic medication adherence was 32.1%.15
To improve medication adherence among patients with schizophrenia, previous studies have explored the effects of interventions involving family, health professionals, short message service or smart electronic reminders.16 To make the intervention more targeted, it is essential to understand the factors influencing their adherence to treatment and their specific needs regarding medication. Some studies have shown that factors such as patient insight, drug side effects, treatment duration, family support and stigma of illness significantly affect medication adherence in patients with schizophrenia.17–20 However, there are several deficiencies in the research on the influencing factors of medication adherence among patients with schizophrenia in China: the number of studies focusing on these influencing factors is limited and almost all existing studies are quantitative, lacking in-depth qualitative research. While family support plays a crucial role in the treatment of schizophrenia in China, few studies have included caregivers as research participants. Previous analyses of the factors affecting medication adherence have not been supported by a robust theoretical framework for comprehensive analysis. Additionally, there is a significant gap in the exploration of the medication needs of patients with schizophrenia when living in a community in China.
Patients’ medication use is a health-related behaviour influenced by both individual and environmental characteristics. The health ecology model (HEM) categorises the factors affecting health into four levels: individual, interpersonal, community and social.21 This study employed a qualitative research approach, focusing on patients and their primary caregivers as the research participants. It aims to analyse the facilitators and barriers to patients’ medication adherence based on the HEM and explore the medication needs of patients when living in the community.
Methods
Study design
The study adopts the semistructured qualitative interview method. We use the Consolidated Criteria for Reporting Qualitative Studies as a standard tool for reporting this study.22
Settings and participants
To gather comprehensive information on medication adherence of patients with schizophrenia, we employed convenience sampling to study patients and their primary caregivers in the community and wards of a psychiatric hospital in Zhuhai city, Guangdong province. The inclusion criteria for community patients were: a diagnosis of schizophrenia according to the International Statistical Classification of Diseases and Related Health Problems 10th Revision or Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition; good cognitive function, allowing for daily self-care and clearly communicating with community mental health physicians or psychiatrists and interviewers; and voluntary participation with signed informed consent. Patients not requiring oral medication were excluded. Based on the inclusion criteria for community patients, two additional criteria were applied to inpatients: prior medical treatment in the community and residence in the community for at least 3 months within the past 6 months. No inpatients were excluded after inclusion. The same inclusion and exclusion criteria were applied to primary caregivers of both community and hospitalised patients. Inclusion criteria included: being a family member of the patient with schizophrenia, living with the patient, providing the most daily care among all caregivers and voluntarily participating in the study with signed informed consent. No exclusions occurred after the inclusion of primary caregivers.
Data collection
Assisted by community mental health physicians and psychiatrists, we recruited participants from 10 June 2024 to 22 June 2024. Interviews were conducted in Mandarin by XL (male, PhD candidate) and YZ (female, Master) from 17 June 2024 to 25 July 2024. Before the interview, the two interviewers conducted mock interviews with each other for training. All participants engaged in the interview independently, conducting it face-to-face in separate rooms. Community patients were interviewed at health service centres, while inpatients were interviewed in psychiatric wards. The interview begins with small talk, such as discussing how things are going, followed by an introduction to the interview’s purpose.
Basic information
For patients, sociodemographic information (including sex and age) and medication adherence were assessed using structured questionnaires. Medication adherence was assessed using a 7-day recall method. Initially, patients’ prescribed medication times and dosages for each antipsychotic were recorded. Community patients reported their actual medication use over the past 7 days, while hospitalised inpatients provided information on their medication adherence during the week prior to admission. Compliance was defined as maintaining a dosage between 90% and 110% of the prescribed amount and taking medications within 2 hours of the scheduled times (eg, if the prescribed time is 08:00, taking the medication between 07:00 and 09:00). If a patient adhered to the prescribed regimen at least 90% of the time over the week, they were considered adherent; otherwise, they were categorised as non-adherent. The age of primary caregivers was assessed using the same methods applied to patients. For caregivers whose ill family members did not participate in the survey, the caregivers provided the patients’ basic information.
Factors influencing medication adherence and medication needs
The interviewer asked patients a series of open-ended questions derived from the literature review and a pilot survey of five patients and three primary caregivers in the psychiatric wards, including: (When living in the community) What factors or situations do you believe will encourage or assist you in taking the medication on time and at the correct dosage? What difficulties or obstacles do you encounter in adhering to your medication schedule? What do you consider the most important factor impacting your timely and accurate medication intake? What kind of support do you need to achieve or maintain the prescribed dosing schedule? Finally, is there anything else you would like to add or share about taking medication on time and in the appropriate amounts? For primary caregivers, similar questions were asked as well: (When the patient lives in the community) What factors or situations do you think will encourage or assist the patient to take medication on time and at the correct dosage? What difficulties or obstacles do you believe the patient faces in adhering to their medication schedule? What do you consider the most important factor impacting the patient’s timely and accurate medication intake? What support do you and the patient need to help the patient achieve or maintain the prescribed dosing schedule? Finally, is there anything else you would like to add or share regarding taking medication on time and in the appropriate amounts among patients? The interview process lasted from 10 to 25 min.
The interviewer manually recorded their responses supplemented by audio records throughout the process with the participants’ informed consent.
Data analysis
Using a combination of manual and audio recordings, we transcribed participants’ responses to open-ended questions verbatim into Chinese text. We used Colaizzi’s 7-step phenomenological analysis to investigate the medication adherence experiences of patients with schizophrenia and their primary caregivers, revealing their personal experiences and insights related to medication use.23 Step 1. Thoroughly review all interview transcripts. Step 2. Extract significant statements. Step 3. Code repeated and meaningful themes. Step 4. Organise coded themes. Step 5. Create a detailed and comprehensive description. Step 6. Identify similar perspectives and extract core ideas. Step 7. Seek validation from participants. The same data were analysed independently by two researchers (XL and YS) and the results were compared with identify common themes. The emerging themes were finalised following a review by the lead and senior authors (SX and YT).
Ethics
Informed consent was obtained from all participants prior to data collection, ensuring that they fully understood the nature of the study and their rights. Participants were assured that their participation was voluntary and they could withdraw at any time without any consequences. To protect the anonymity and confidentiality of participants, all data collected were anonymised and personal identifiers would be removed from our research results. Data were stored securely and only accessible to the research team. The researchers adhered to strict ethical guidelines to prevent any coercion, ensuring that all participants felt free to make their own choices regarding participation in the study.
Patient and public involvement
During the data collection phase, we invited patients and (or) their primary caregivers to participate as interviewees which allowed them to share their experiences and insights in a collaborative environment. After data analysis, we held feedback sessions where participants discussed our findings and provided their input on the interpretations and implications of the research results.
Results
Participant characteristics
The study included 20 patients and 12 caregivers, consisting of four matched pairs of patients and caregivers. Among the 20 patients, 11 were from the community and 9 were from the psychiatric ward. Among the 12 caregivers, 5 were from the community and 7 were from the psychiatric ward. The characteristics of the participants are presented in table 1.
Characteristics of included participants
Factors influencing medication adherence
Based on the HEM, we examined the facilitators and barriers to medication adherence among patients with schizophrenia in China across four levels: individual, interpersonal, community and policy and culture. The model illustrating these influencing factors is depicted in figure 1.
Influencing factors of medication adherence among patients with schizophrenia across different levels.
Individual level
Facilitators
Effective treatment
Effectively alleviating symptoms with appropriate medication is essential for patient adherence. This is the primary objective of medication use. Conversely, if the treatment fails to adequately control symptoms within an acceptable range, patients may lose confidence in their medication. Furthermore, worsening symptoms can impair cognition, leading to unauthorised dosage reductions or discontinuation.
P10: When I don’t take my medication, I start to experience symptoms, feeling as if my family is harming me. When I take my medication, I can manage those symptoms.
C6: After he was discharged from the hospital for the first time, we ensured he took his medication at home. However, he reported hearing voices occasionally (auditory hallucinations). He felt symptomatic regardless of whether he took the medication, which made him reluctant to continue. Despite my husband and I reminding him to take it, he ignored us. Consequently, his symptoms worsened, eventually leading to another hospitalization.
Positive expectation
Schizophrenia negatively affects patients’ daily lives and work to varying degrees. Positive expectations such as early recovery without medication, prevention of symptom recurrence and re-hospitalisation and a prompt return to work can motivate patients to enhance their medication adherence.
P1: Adhering to my medication helps me maintain a normal daily life and prevents my symptoms from recurring. When I take my medication regularly, I feel more stable.
P4: I was hospitalized because I stopped taking my medication. Thankfully, I feel better now and will be discharged tomorrow. I know I need to take my meds on time when I get home. Honestly, I really don’t want to experience this again—being in the hospital is just so dull.
P13: When I take my medication, I can manage my symptoms more effectively. It enables me to work, play sports, and enjoy my favorite activities.
Establish a routine for taking medication
Establishing a consistent medication routine is vital for improving adherence, as reported by participants. For example, integrating medication intake with daily activities—such as taking medication before or after meals or just before bedtime—can help patients remember their doses more easily. By associating medication with these regular habits, patients can normalise their treatment, making it feel less like a chore and more a part of their daily lives.
P13: I’ve established a routine of taking my medication twice a day, at 7 AM and 7 PM, right after my meals. It has become a part of my daily life and now feels natural.
C8: After her first hospitalization, I made it a point to remind her daily to take her medication before eating, and I would watch her do it. Now, it’s a solid routine. Every morning before 7:30 and every evening around 5:30, she takes her medication first and then has her meal. Even when I don’t remind her, she remembers to take it on her own.
Assistive tools
Assistive tools—such as alarm clocks, pill organisers and medication logs—can support medication adherence among patients with schizophrenia. Alarm clocks act as effective reminders, helping patients consistently take their medication. Additionally, pill organisers and medication logs enable patients and caregivers to track missed doses, fostering accountability and awareness.
P20: I purchased a special alarm clock to remind myself to take my medication every day. After I take my meds, I make a note in my notebook. This routine helps me stay on track with my doses.
P5: I got a pill dispenser, and I make sure to refill it every time I take my medication. This way, I can easily see how much I’ve taken. It really helps me remember and gives me a sense of control over my medication routine.
Barriers
Side effects
The side effects of medications—such as obesity, lethargy, delayed response, dry mouth and tremors—are significant obstacles to medication adherence. For female patients of childbearing age, menstrual irregularities and reproductive health concerns further affect treatment compliance. Additionally, apprehension about potential unknown side effects can also reduce adherence to prescribed medication regimens.
P18: The side effects of this medication have been overwhelming. Since I started taking it, I’ve gained nearly 10 kilograms. I often experience dry mouth, which makes me drink water constantly, and I feel very lethargic. After taking the medication at night, I find I need to sleep, and I usually don’t feel comfortable going out after dark.
P3: Since starting the medication, I’ve noticed my thinking has slowed, and I stutter more often. My reactions aren’t as quick as they used to be, and I’ve gained over 10 kilograms, which makes me increasingly dissatisfied with myself. Recently, I got married and began considering having children, but I worry that the medication might negatively impact my pregnancy, so I decided to stop taking it.
C4: The side effects of the medication are too numerous for her. She feels lethargic and has gained weight. Her mother and I keep a close eye on her, but she only eats a little now and then.
C7: She believes all medications come with side effects, viewing them as a kind of poison harmful to the body. When she feels better, she tends to stop taking the medication, convinced it’s not good for her health.
Inadequate disease knowledge
Many patients lack a comprehensive understanding of their condition, leading them to believe that controlling their symptoms means the illness is cured and that continued medication is unnecessary. This misconception significantly contributes to poor medication adherence.
P8: Initially, the doctor prescribed me two boxes of medication. After finishing the first box and feeling better, I didn’t see the need to continue, so I decided to stop taking it altogether.
C6: He started feeling better and believed he no longer needed the medication, so he decided to hide it and ultimately stopped taking it.
Forgetfulness to take medication
For many patients with schizophrenia, forgetfulness significantly contributes to medication non-adherence. Daily activities and responsibilities can easily distract them from their treatment regimen, resulting in missed doses. This often happens when patients become preoccupied with other tasks, making it difficult to prioritise their medication.
P12: I live alone, and sometimes I forget to take my medication.
P17: Every night after dinner, I tackle household chores, and sometimes I feel overwhelmed by the workload. After I finish, I often forget to take my medication.
C10: He tends to stay up late, and if no one reminds him, he frequently forgets to take his medication.
Irregular daily schedule
An irregular daily schedule, such as staying up late or frequently switching between night and day shifts, significantly hinders medication adherence among patients with schizophrenia. These disruptions to their sleep–wake cycle can lead to missed doses, delayed administration or complete failure to take medication as prescribed.
P6: I work as a food delivery driver, which often requires night shifts. I need to take my medication after breakfast, but sometimes I finish a night shift and struggle to get up in the morning. On those days, I end up taking my medication around noon.
C4: Since she developed this condition, her sleep patterns have changed completely. She often stays up all night and has difficulty getting up in the morning, making it challenging for her mother and me to remind her to take her medication.
Interpersonal level
Facilitators
Caregiver assistance
When patients encounter individual-level obstacles to medication intake, caregiver assistance becomes essential for enhancing adherence. Caregivers’ reminders are effective in reducing non-adherence due to forgetfulness. Additionally, when patients are reluctant to take their medication, family supervision plays a crucial role in promoting adherence and improving overall compliance. In some cases, family members may even resort to deceptive measures to ensure that patients take their medication.
P7: Last year, I started feeling unwell and ended up hospitalized for over 50 days. The side effects of the medication were overwhelming, making me reluctant to take it. My family constantly supervised my medication intake, and I would only take a small amount when they urged me.
C7: I stayed with her around the clock to ensure she took her medication. Whenever she refused, I would take her to the hospital, as it felt like the only way I could help.
C9: She has always been reluctant to take her medication. To encourage her, I told her a little lie—that it could help delay the graying of her hair. Every day, I bring her the medicine and closely supervise her as she takes it.
Psychiatrist’s recommendation
Recommendations from psychiatrists are crucial for medication adherence among patients with schizophrenia. When doctors provide clear guidance and strong encouragement for consistent medication use, it fosters trust and accountability. Patients are more likely to comply with their treatment plans when they perceive their healthcare providers as supportive and invested in their well-being.
P3: My family is from Xinjiang, and when I was there, the doctor at our local hospital emphasized the importance of taking my medication regularly and in the proper amounts. I made sure to follow his instructions and took all my medications as prescribed. However, after moving to Zhuhai, I stopped my medication.
P19: The doctor advised me to take my medication consistently, so I made it a routine to keep taking it without fail.
Barriers
Lack of social support
Family support and strong connections with psychiatrists can enhance medication adherence among community-dwelling patients with schizophrenia. Conversely, distancing from family and psychiatrists, along with a lack of social support, can hinder adherence to medication.
P3: My family is from Xinjiang, and when I was there, the doctor at our local hospital emphasized the importance of taking my medication regularly and in the proper amounts. I made sure to follow his instructions and took all my medications as prescribed. However, after moving to Zhuhai, I didn’t know anyone, didn’t see a doctor here, and didn’t contact my doctor in Xinjiang. As a result, I stopped my medication.
C1: I knew whether she took her medication in Xinjiang, and if she didn’t, I would remind her. However, after she came to Zhuhai, I couldn’t tell if she was taking her medication.
Community level
Facilitators
Community mental health services
Community mental health services are essential for improving medication adherence among patients with schizophrenia. These services provide a supportive environment where patients can access health education and resources related to their condition and treatment. Regular interactions with mental health professionals help patients understand the importance of adhering to their medication regimen.
C1: She believes that community management would disrupt her life. While she doesn’t seem to heed my advice, if she were under community management with regular visits from a doctor to remind her to take her medication on time, she might be more receptive.
Reduce medication use frequency
Reducing medication frequency is a significant factor in enhancing adherence among patients with schizophrenia. The use of long-acting injectables allows patients to receive their medication less frequently which can alleviate the burden of daily pill-taking. This approach simplifies their treatment regimens and can lead to better adherence, as patients may feel less overwhelmed.
P4: I used to find taking my medication twice a day to be really inconvenient. Sometimes I felt too lay to eat or just didn’t want to eat at all. But now, with the long-acting injection—I’ve had three of them so far—it’s been much easier. Although I still need to take some oral medication, I can manage taking it just once a day, which feels much more manageable. After I get discharged, I’m planning to continue with the long-acting injections.
C12: She doesn’t want to take her medication at all. Right now, I’m considering getting her a long-acting injection.
Barriers
Limited medication accessibility
Limited medication accessibility hinders treatment adherence among patients with schizophrenia. Many patients face challenges, such as living far from healthcare facilities, which makes it difficult to obtain necessary medications regularly and discourages them from seeking care altogether.
P14: We live quite far from the hospital, and it takes us about two hours on the bus just to get there to pick up my medicine. Often, the bus is crowded, and I can’t find a seat. It’s really exhausting, both physically and mentally, and sometimes it makes me hesitant to go get my medication.
C9: It’s really troublesome for me to get the medicine. I have to take three bus transfers each time, and it takes my whole day—leaving at 7 in the morning and not getting back until 2 or 3 in the afternoon. Plus, I can only pick up a month’s supply at once, and the doctor doesn’t prescribe any more than that.
Limited medication affordability
Limited medication affordability poses a barrier to medication adherence among patients with schizophrenia. For some patients, when medications are not covered by insurance and must be paid for entirely out-of-pocket, the financial burden can be overwhelming. Some patients struggle to afford their prescriptions, leading to inconsistent use or outright discontinuation of necessary treatments.
P6: As someone from another region, I don’t have access to Zhuhai’s medical insurance, which means I have to pay for my medication entirely out of pocket. This amounts to several hundred yuan each month. My dad usually picks up my prescriptions for me, but there have been times when he didn’t and later said he simply forgot. I suspect that the financial pressure is what really holds him back from getting the medication.
C4: Since she was diagnosed with this illness, she hasn’t been able to work and relies entirely on my pension to get by. Because she hasn’t applied for a disability certificate, the financial burden of her medications falls solely on us. Every month, the costs really add up, making it difficult for us to manage our finances.
Policy and culture level
Facilitators
Social security policy
Social security policies play a crucial role in enhancing medication adherence among patients with schizophrenia. Access to medical insurance ensures that patients can afford necessary medications without the heavy burden of costs. Additionally, disability assistance provides financial support that alleviates economic stress, allowing patients to focus on their treatment.
C1: Although she is reluctant to apply for a disability certificate, I believe it would be beneficial for her to do so in order to take advantage of the supportive policies offered by the government, which could be very helpful for her situation.
C6: He was discharged from the army about a year ago and returned home with this illness. Initially, he worked in a factory and had health insurance, but he has since left that job. Now, we have to cover the costs of his medications and hospital stays on our own. In the two to three months leading up to his hospitalization, the monthly cost of his medications exceeded 2000 yuan, which is quite expensive for us. A doctor suggested that I apply for a disability certificate for him, which would allow him to access some policy subsidies to help cover the costs of his medications and hospital stays.
Collectivist culture
In Chinese collectivist cultures, filial piety and familial responsibility can enhance medication adherence among patients with schizophrenia. Patients often feel a strong obligation to care for their family members which motivates them to maintain their treatment regimens. This commitment to family reinforces their desire for stability and health. By prioritising their well-being to fulfil their responsibilities, patients are more likely to adhere to their medications, viewing their recovery as essential to the family’s overall harmony and functioning.
P6: My father and I are the only ones in our family. He’s getting older and needs my support, but it’s difficult to know he’s alone and that I can’t care for him as I should. When I leave the hospital, I will take my medication regularly and care for him at home.
C2: My husband is gone, and I’m raising four kids on my own. My oldest son is in the hospital, and the other three are still in school. I work at a fast-food restaurant to make ends meet and alleviate some of the pressure. He often tells me he is committed to taking his medication regularly because he believes it will help him get better. He really wants to leave the hospital and find a job so he can help support the family.
Barriers
Stigma
Stigma significantly impedes medication adherence among patients with schizophrenia. Many individuals may deny their illness due to societal perceptions and fear of discrimination, leading to a reluctance to seek treatment or acknowledge their need for medication.
C9: The public often looked down on those with mental illness, and she felt it was a shame to be affected by such a condition. She constantly insists that she is not ill, refuses to take her medication, and expresses a strong aversion to it.
C12: She feels that having schizophrenia is very humiliating, so she is reluctant to admit that she is ill. She doesn’t want to take her medication or receive injections. I have to watch her every day, bring her the pills, and make sure she takes them.
Medication needs
When patients with schizophrenia reside in the community, they have five medication needs: managing side effects, applying for social security to improve affordability, improving medication accessibility, transitioning to long-acting injections and getting health education. These needs are summarised in figure 2.
Medication needs among patients with schizophrenia when living in the community.
Managing side effect
Side effects, including obesity, drowsiness and irregular menstruation, are significant barriers to medication adherence among patients with schizophrenia. Consequently, effective management of these side effects is a primary concern for both patients and their families.
P3: I really want to lose some weight, but I feel like I’m getting heavier and heavier. It makes me feel frustrated and unhappy with myself.
P13: I take my medication every day, and it makes me feel so sleepy. I have farm work to do at home, and it really affects my ability to get things done. I wish it didn’t make me so drowsy.
C8: I supervise her to take medicine and eat every night, but after eating, she gets so sleepy that she can’t do anything. She’s gained a lot of weight, and her stomach is really big. I want the doctor to help her lose weight.
Applying for social security to improve affordability
Applying for social security is a crucial step for individuals with schizophrenia and their families, as it provides essential financial support that alleviates the burden of medical expenses and daily living costs. For many patients, the unpredictable nature of their condition hinders consistent work, making social security a vital resource for stability. Accessing these benefits helps ensure their basic needs are met and facilitates better adherence to treatment plans.
C1: She doesn’t want to apply for a disability certificate and isn’t interested in accepting community support, but I really want her to apply for it. Right now, I’m paying for her medical treatments and medications out of my own pocket, and it’s putting a bit of financial pressure on me.
C6: He doesn’t have social security at the moment, so his dad and I are going to the Social Security Office to find out how we can get him benefits. The doctor mentioned that he can get a disability certificate, but I’m not sure about the specific application process. We’ll also need to check with the neighborhood committee for guidance.
Improving medication accessibility
Patients living far from hospitals often face significant challenges in accessing their medication, leading to low medication accessibility. This distance can make it difficult for both patients and their caregivers to obtain necessary prescriptions regularly. Some patients and caregivers express a desire for more convenient options, such as being able to pick up medications at nearby community health institutions or having their medications delivered directly to their homes.
P14: We live quite far from the hospital, and it takes us about two hours on the bus just to get there to pick up my medicine. It would be really convenient if I could pick up my medicine at the community health station. It would save me from having to squeeze onto a crowded bus.
C9: It’s really troublesome for me to get the medicine. It would be really helpful if the medicine could be mailed directly to our home.
Transitioning to long-acting injection
Long-acting injections can significantly reduce the frequency of medication for patients, allowing them to transition from daily pills to injections every month or every 3 months. This change not only eases the medication burden for patients but also makes it more manageable for caregivers. As a result, many patients and their families express a preference for switching oral medication to long-acting injections.
P4: I used to find taking my medication twice a day to be really inconvenient. Sometimes I felt too lazy to eat or just didn’t want to eat at all. But now, with the long-acting injection—I’ve had three of them so far—it’s been much easier. Although I still need to take some oral medication, I can manage taking it just once a day, which feels much more manageable. After I get discharged, I’m definitely planning to continue with the long-acting injections.
C12: She doesn’t want to take her medication at all. Right now, I’m considering getting her a long-acting injection.
Getting health education
Due to a lack of understanding about medication, caregivers often find themselves unsure of the reasons behind any adverse reactions that patients may experience while taking medicine at home and they may not know how to address these issues. Therefore, it is essential to provide health education for caregivers regarding medication knowledge.
C7: I used to get her medication at our hometown hospital, but the doctor didn’t clearly explain what the drugs were. They prescribed her sleeping pills, which had a negative impact on her. I really wish the doctor had taken the time to explain the effects of the different medications.
Discussion
Based on HEM, this study used a semistructured interview method to analyse the factors influencing medication adherence among patients with schizophrenia. The findings identified facilitators and barriers at the individual, interpersonal, community and policy and cultural levels, providing valuable insights for enhancing medication adherence. Additionally, we identified five medication needs for patients living in the community.
Influencing factors at the individual level
Consistent with previous studies, we identified similar influencing factors of medication adherence among patients with schizophrenia at the individual level. The effectiveness of treatment was mainly reported in qualitative studies.24 Facilitators (attitudes or expectations toward medication and the use of assistive tools)17 18 24–26 and barriers (medication side effects and inadequate knowledge of illness) were reported both in qualitative and quantitative studies.17–20 27 Notably, the use of assistive tools as part of interventions to enhance medication adherence has been effective in clinical studies. Velligan et al implemented cognitive adaptation training using signs, checklists and alarms which significantly improved medication adherence among patients with schizophrenia at home compared with the conventional treatment group (F=23.51, p<0.001).25
Furthermore, our study found that both patients and their primary caregivers emphasised the importance of establishing a medication routine. This aligns with findings on patient medication patterns: after experiencing a ‘loss of self’ during periods of high medication use as well as a phase of adjustment (involving increases, decreases or cessation), patients with schizophrenia develop relatively stable medication patterns.26 At the individual level, key measures to enhance medication adherence in patients with schizophrenia include maximising treatment effectiveness, improving patients’ attitudes and expectations toward medication, using assistive tools, establishing medication routines and managing side effects.
Influencing factors at the interpersonal level
Our study identified caregiver supervision and psychiatrists’ recommendations as interpersonal-level facilitators of medication adherence among patients with schizophrenia. These findings align with previous research which has shown that caregiver involvement is crucial; for example, Yang et al found that a lack of caregiver supervision was significantly associated with non-adherence (β=1.814, p<0.05).28 Caregiver supervision has been validated as an effective method to improve medication adherence in patients with schizophrenia through intervention studies. Farooq et al conducted a randomised controlled trial, finding that supervised medication administration significantly enhanced patients’ adherence (relative risk, RR=1.59, 95% CI: 1.03 to 2.53).29 In previous studies, psychiatrists’ recommendations were usually reflected in the form of a therapeutic alliance and a good therapeutic alliance would promote medication adherence.30–32 Previous studies have also indicated that caregivers’ negative attitudes towards medication are linked to low medication adherence among patients (OR=7.157, 95% CI: 4.059 to 2.620).33 Distancing from caregivers and psychiatrists, along with the resulting lack of related social support, hinders patients’ ability to adhere to medication. This also underscores the crucial role that families and psychiatrists play in ensuring medication adherence among individuals with schizophrenia.
Influencing factors at the community level
In China, the management of severe mental disorders has been part of basic public health services since 2009.8 Community doctors provide at least four follow-up visits per year to assess medication adherence and offer health education and rehabilitation guidance. Li and Zhang found that regular follow-up significantly enhances medication adherence among patients with schizophrenia (χ2=4.697, p<0.05).34 Since 2023, Guangdong province has initiated a project to evaluate long-acting injections, allowing eligible patients with schizophrenia to receive them for free which promoted the use of long-acting injections.35 Previous studies have identified limited accessibility and affordability as barriers to medication adherence in patients with schizophrenia.36 37 Community-level factors offer valuable insights for enhancing medication compliance among patients with schizophrenia.
Influencing factors at the policy and culture level
For patients with schizophrenia in China, government programmes provide outpatient medication subsidies (around ¥200 per month, with regional variations), disability allowances and guardian compensation.9 11 12 Those facing severe financial difficulties may also receive minimum living guarantees.38 These policies support treatment initiation and maintenance. Li et al found that providing free medication significantly improves medication adherence among community patients with schizophrenia (χ2=8.284, p=0.016).39 Filial piety and family responsibility in collectivist cultures facilitate medication compliance among patients, as reported in a prior study by Chang et al in Taiwan, China.24 Stigma serves as a barrier to treatment initiation and adherence for individuals with schizophrenia globally.13 18 19 A cross-sectional study by Karabulut and Uslu demonstrated that internalised stigma is inversely associated with medication compliance among patients (β=−0.034, p=0.002).18 To enhance medication adherence among patients with schizophrenia, the impact of policy culture should be given careful consideration.
Medication needs
Our study identified five key areas of medication needs for patients with schizophrenia in China, addressing barriers at individual, interpersonal and community levels. Consistent with previous studies, managing side effects, improving medication accessibility and affordability, getting more health education on medication are under-met needs for patients living in the community.40 41 In addition, with the promotion of long-acting injections in China in recent years, some patients and caregivers also expect to improve medication adherence through long-acting injections. These findings offer valuable insights for optimising community management of individuals with schizophrenia to improve their medication adherence in China.
Limitations and future directions
This study has several limitations. First, it used a non-probabilistic sampling method. While both community-dwelling and hospitalised patients, along with their primary caregivers, were included, some participants may have declined to participate due to the stigma associated with mental illness which could limit the comprehensiveness of the results. Second, although our study included patients of various genders, ages and other characteristics, as well as caregivers with differing relationships with the patients to enhance representativeness, the small sample size necessitates caution in extrapolating the results. Third, long-term hospitalised patients were excluded from this study and the findings may not be applicable to this population. Further research is warranted to explore the factors influencing medication use after these patients return to the community. Fourth, although semistructured interviews provided in-depth insights, the lack of data quantification is a notable gap. Additionally, while community mental health doctors and psychiatrists play essential roles in medication management, their perspectives were not included in this study. Future research should aim to quantify the findings and incorporate the views of community mental health practitioners and psychiatrists to provide a more comprehensive understanding of the influencing factors and patients’ medication needs.
Conclusion
Our study identifies both facilitators and barriers to medication adherence among patients with schizophrenia in China at the individual, interpersonal, community and policy and culture levels. Additionally, we delineate five key needs related to medication adherence. These findings offer critical insights for healthcare providers and policymakers, emphasising the need for targeted interventions to enhance adherence among patients with schizophrenia. By addressing these factors and needs, stakeholders can develop more effective strategies to support patients in following their treatment plans.
Data availability statement
Data are available upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by the Ethical Committee of the Third People’s Hospital of Zhuhai (01,20240511). Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We would like to express our heartfelt gratitude to all the study participants, including patients with schizophrenia and their primary caregivers, for their invaluable contributions to this research. We also extend our sincere thanks to the community mental health physician, Jianjun Zhou and psychiatrists Xueshi Wang, Fangfang Li and Zhiyao Wu in The Third People’s Hospital of Zhuhai for their assistance in organising patient interviews. Their support was crucial to the success of this study.
References
Footnotes
Contributors XL: Conceptualisation, Methodology, Investigation, Software, Formal Analysis, Writing—Original Draft, Writing—Review and Editing. SX: Conceptualisation, Methodology, Writing—Review and Editing. YS: Software, Formal Analysis, Data Curation, Writing—Review and Editing. YZ: Investigation, Writing—Original Draft, Writing—Review and Editing. JH, NW, MC, SZ: Methodology, Quality Control, Writing—Review and Editing. YT: Methodology, Investigation, Visualisation, Supervision, Project Administration. YT is the guarantor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.