Abstract
Background:
Psychiatric problems have been a growing and significant public health challenge. Community-based psychiatric services have been shown to contribute to the improvement of health and social-related outcomes, but with limited specialists in this field. Consequently, Thailand has integrated these services into the primary care system delivered by community nurses working in primary care units (PCUs).
Aim:
To describe the experiences of psychiatric patients in receiving services provided by non-specialist community nurses.
Method:
A phenomenological approach was used. Eleven psychiatric patients with 10 major depressive disorders and 1 with schizophrenia were interviewed. The results were evaluated using thematic content analysis.
Results:
The results revealed two main themes as barriers and facilitators experienced in receiving services from community nurses.
Conclusion:
Community-based services should be concerned about developing psychiatric nursing competency for community nurses to extend basic services to patients in communities and to assist family members.
Highlights
Understanding the gaps of psychiatric caring experiences among psychiatric patients in the community.
Reflect the real needs of psychiatric patients in primary care.
Points to important of cooperating between psychiatric patient and community nurses.
Discussion implication for strengthening caring in psychiatric patients in community.
Introduction
Psychiatric problems have emerged as a growing and significant public health challenge, with its global burden estimated to account for a significant proportion of disability-adjusted life-years (DALYs). Some view that the true burden of mental illness is often underestimated (Toyama et al., 2017). Extensive developments have advanced worldwide in reforming mental health systems by shifting away from institutional care toward community-based services (Nicaise et al., 2014). However, when patients are discharged from institutions, often little support is provided, and, at best, the family is provided only medication, inadequate for the patient. This then renders the patient vulnerable for relapse, especially with a family overwhelmed by its limitations in providing the required care and support. Most relapses are due to loss of medication, facing stresses of life, and substance abuse in order to reduce stress (Juntapim & Nuntaboot, 2018). These consequences reflect the patients’ suffering of living with the disease, inability to sustain positive relations with others, limited choices, and low self-esteem, which could lead to suicide (Aekwarangkoon & Noonil, 2019). Moreover, families of these patients must also frequently deal with financial pressures, the disruption of domestic routines, constraints to social and leisure time, physical violence, damage to property – all of which present challenges to the families as well as the stigma that is commonly directed at people with mental illness (Yeh et al., 2017).
Community-based services affect psychiatric patients who require components of psychosocial, physiological, medical support, and social services, essential in ensuring patients lead fulfilling lives (Juntapim & Nuntaboot, 2018). Besides, research has shown that these patients prefer services provided in their own environments to maintain relationships and ensure employment. This approach is also endorsed by the WHO Optimal Mix of Services for Mental Health, which emphasizes the need for readily available and balanced mental health services (Thornicroft et al., 2016) while placing considerable emphasis on the value of community and self-care actions (World Health Organization [WHO], 2018). These services have been shown to improve health-related outcomes as well as social outcomes (Bond et al., 2001). Patients have reported fewer negative symptoms, enhanced social capital, and greater life satisfaction when the process of deinstitutionalization is conducted through a strong network of community-based care to support the transition from the hospital to the community (Dolchalermyuthana & Wannagul, 2014).
In Thailand, mental health care policies also focus on shortening the duration of hospitalization and returning patients with mental illness to live with their families in the community as soon as possible (Department of Mental Health, Ministry of Public Health, 2020). Studies suggest that mentally ill patients can re-enter the community provided there is a well-organized system of care to address their mental health needs (Thornicroft et al., 2016). Effective psychiatric caring focuses on medication, psychosocial therapy, and milieu therapy (Juntapim & Nuntaboot, 2018). The therapeutic approach is necessary for the rehabilitation process to ameliorate symptoms, reduce severity, and improve the healing process. Nevertheless, this holistic treatment require specialists – specialists who are limited in number, and this predicament is even much worse in low and middle-income countries (Saraceno et al., 2007), including Thailand (Department of Mental Health, Ministry of Public Health, 2020). Only a few patients receive psychosocial interventions in outpatient facilities. Moreover, access to mental health facilities is uneven across the country and favors those who are living in major cities and who can pay at least 1,000 baht ($32 US) for private clinics (Bussahong et al., 2019).
In response to this policy, the Department of Mental Health integrated psychiatric services into primary healthcare delivered by community nurses in the primary care units (PCUs). These community nurses usually act as the first responders and have a broader range of roles and responsibilities to provide services of health promotion, disease prevention, medical treatment, health rehabilitation, and ongoing care for the community (Department of Mental Health, Ministry of Public Health, 2020). Thus, they work in various functions and play a key role in providing psychiatric care (Bussahong et al., 2019). However, most of them have participated only in a 4-month short training course for general nurse practitioners focusing on primary medical care, but not psychiatric care. Psychiatric care may involve complicated cases requiring consideration of institutional re-admittance, dealing with substance abuse, and facing negative environmental stimuli in their roles of monitoring and home visiting (Juntapim & Nuntaboot, 2018). They are expected to provide specific effective treatment and to collaborate with stakeholders in mobilizing resources for balancing mental health and healing in complex symptoms among psychiatric patients and their families (Bussahong et al., 2019). However, for a complex disease, patients and families need specialty skill for treatment based on individual conditions and context whereas these community nurses in PCUs are not specialists, most of whom needing support for providing psychiatric care (Juntapim & Nuntaboot, 2018).
The challenge of policymakers is to define appropriate nursing roles in primary care to assure efficient, evidence-based, and quality health care (Norful et al., 2017). The patient experience is increasingly being recognized as an important factor in developing and providing excellence in health care. While some studies have looked at life in the psychiatric ward (Dolchalermyuthana & Wannagul, 2014) from the patient’s perspective, no research exists that has approached the health care experience of the patients in community-based care. The purpose of this study is to examine the psychiatric patients’ experiences in receiving services provided by non-specialist community nurses. The knowledge gained from these psychiatric patients may not only enhance understanding for more effective nursing care in the community but may also contribute to the improvement of psychiatric patients’ well-being.
Methods
Design and participants
The Colaizzi’s phenomenological method was used as a framework (Thomas & Pollio, 2002) to gather and analyze data to gain insight into the experiences of 11 psychiatric patients, 6 males, and 5 females. They were enlisting by the purposefully selected on the basis of inclusion criteria as: (a) diagnosed and referred from the psychiatric hospitals; (b) experienced being cared from community nurses in the PCUs at least 1 year; (c) able to communicate; and (d) willingness to be interviewed. The total number was 32 patients (15 major depressive disorders, 5 bipolar disorders, and 12 schizophrenias), 21 patients refused to participate in the study, 14 caused by their symptoms disturbances, 6 can’t communicate in a long time, and 1 rejects to participate. Thus, the 11 participants included 10 major depressive disorders and 1 for schizophrenia. The participants ranged from age 29 to 63 years; 9 participants were divorcees/widows and 7 had a primary school education. Nine participants received only disablement benefits from the government, 8 of whom perceived this subsidy as adequate.
Data collection
The participants were interviewed using a semi-structured interview that explored their experiences of receiving services provided by non-specialist community nurses from the PCUs. To gather phenomenological in-depth data, we interviewed each participant in a confidential room for about 40 to 60 minutes depending on each participant. To probe the participants’ responses about psychiatric care in their community, we started by creating trust and security before proceeding by engaging in common small talk, moving toward open-ended questions, and then closely followed by some additional questions. The participants had the opportunity and were stimulated to talk about events or observations about study-related issues. The collection of data and analysis proceeded at the same time to develop topics related to the reality of the patients’ perspectives and experiences of receiving treatment in primary care. The interviews ended after the themes were clearly recognized.
Analysis
Data were analyzed using steps of Colaizzi’s (1978; Morrow et al., 2015): (1) The participants’ responses were transcribed verbatim. The validity and accuracy of the process was assured through repeated audio-tape listening and script reading. (2) Significant statements of direct relevance to the research phenomenon were identified from participants’ transcripts. (3) Formulated meanings relevant to the phenomenon were developed after careful consideration of the significant statements close to the phenomena of the participants’ experiences. (4) Formulated meanings were grouped based on their similar themes and arranged into two main themes from patients. (5) A full and inclusive description of the phenomenon is written, incorporating all the themes produced at step 4. (6) Rigorous discussions were held by the two researchers to determine whether any significant factors in the interpretation process were influenced by the researchers’ perceptions, experiences, and backgrounds, thus the researchers’ perspective and biases were actively acknowledged, and (7) Verification was ensured by two methods: peer-briefing and presenting the final draft of the findings to the participants to confirm or modify the outcomes of the study analysis.
Trustworthiness
Honesty and credibility were established through member checking, peer checking, and prolonged engagement (Anney, 2014). Member checking was done by asking the participants to audit the conclusions from the earlier interviews. Peer checking was conducted by three psychiatric nurses as specialists. A prolonged engagement with the participants within the research field helped the first author to obtain the participants’ trust and a better understanding of the research fields. Prolonged engagement or immersion in the field is essential to be sure that the collected data were relevant and adequate to attain the goal of the study (Anney, 2014). Maximum variation of sampling also betters the conformability and credibility of the data. The researchers ensured the depth of the content and its authenticity by circumstantially recognizing diverse and novel data. The analysis was brought to an end by recognizing some themes that appeared to describe the patients’ perspectives and attitudes about experiences of caring in primary care, thus, the analysis could be concluded.
Ethical considerations
This research was a part of the Thailand Nursing and Midwifery Council Research Project, entitled “Roles and Responsibilities of Nurses in Driving Primary Health Care Systems” and had been approved by the Committee on Human Rights Related to Research Involving Human Subjects, Walailak University, Thailand (No: WU EC-19-028-01). Participants and their caregivers were informed of the purpose and nature of the research before obtaining written consent and that they were able to withdraw consent at any time during the interview. Each participant was assigned an identification number to maintain anonymity.
Results
Thematic analysis resulted in two main themes as experiences which acted as barriers and facilitators in receiving community-based services by community nurses.
Barrier experiences
Societal stigma was reported to be directed at both patient and family who were viewed negatively because of the existence of the mental illness, especially in patients with violent behaviors or substance abuse. The visits of the community nurse confirmed that they still had a serious mental illness. Most people in the community did not accept and feared that the patients would not be able to control themselves and would harm others. As a result, most of the patients were rejected when applying for work and also were discouraged to participate in social activities because they were ‘mad’. Therefore, this activity reinforced ignorance which led to increased prejudice because of home visits as illustrated in the following quotes: I need to beg the nurse to stop visiting me because it identified me as a mad person who has a severe mental illness and there is still a risk living with me. The community is scared, suspicious, and is afraid that I would harm others. This activity causes me and my family low self-esteem, lacking dignity, and creates stigmatization. (F 1)
Community nurse focuses on medicine but not on my suffering
Although 10 of the patients perceived that medicine was very important to controlling psychotic symptoms, they hoped to stop all medication because of their side effects such as appearing sick, drowsy, stiff, interfering with work, and daily life activities. Besides, it meant that they were still psychiatric patients; suffering from side effects and taking medicine represented being mad and causing them to live with chronic pain throughout their whole lives, but the nurses still forced them to continue medication. Although community nurses tried to advise these patients to understand the importance of continuously taking medicine and how to manage their side effects, yet regularly taking medicine was very difficult for the patients to accept. In reality, patients need community nurses to be concerned not only about alleviating their medical condition by taking medications and its side effect but also about healing their patients’ deep suffering as stated below: For a very long time, I have known the importance of medicine to control my mental illness, but, in reality, it is hard for me to do as suggested because it makes me suffer and disturbs my functioning. Every patient needs to stop all medicines because it causes us to suffer all our lives. Instead of medications, I need new treatments to overcome my symptoms. (M 5)
All of the patients experienced complicated symptoms such as extreme sadness, suspicion, apathy, etc. that created a lot of suffering. They needed someone to listen and understand, but they realized that there was nobody as illustrated in the following quotes: I need deep understanding from someone who can see and listen to my deepest heart, to understand me as I am, helping me to control suffering from psychiatric symptoms especially in nervous or uncertain situations, and being with me to get through this period but I realize that there is nobody there. (M 3)
The expressed need for a specialist
The need for psychiatric specialists emanated from their helplessness and the inability to provide for the needs of the mentally ill. They expressed that the community nurse is expert in coping with physical problems, but not psychiatric problems as illustrated in the following quotes: I live alone. Not only can’t I connect with others, but also I can’t be with myself. I was born into the world but live in deep pain: helpless, hopeless. I need a specialist to listen and help me come out of the darkest abyss. Medicine can’t help me. Community nurses can help me with medication, relieve its side effects, very good monitor of lab, blood pressure, and physical care. But I need deep mind caring. (F 5)
Facilitating experience
Recognize the good intentions from community nurses
Patients and families realized those community nurses were sincere and tried to provide caring, support, and empowering them to cope with suffering and enabling them to live with society. The nurses developed trust and connected with patients and families with warmth, gentleness, and smiles. They encouraged patients and families to let go of the suffering of their life crises while developing internal strength as much as they could. Also, as the nurses were aware of stigmatization aggravated through the home visiting process, they reduce stigma by changing uniform as stated below: I realize that the nurse tries to care, empower, and support me and my family to overcome my illness although they also suffer in providing care because I am still bad. Her smile, warm words, and sincerity make me trust to talk without fear and make me feel comfortable. She also changes her uniform to reduce stigmatization. (F 4)
Efforts to support wellbeing
The nurses tried to provide occupational assistance by collaborating and mobilizing positive resources to support patients and families by having some occupation generating enough income, enhancing patient’s positive internal resources such as self-esteem, independence, safety, etc. for living with chronic mental illness as illustrated in the following quotes: The nurse helps me to live as a normal human being by cooperating with other organizations or other persons in the community to support my occupation and also provide other positive resources essential for living with self-esteem. Having an income makes me feel free from being a burden to others. Life seems to be more meaningful and safe. I don’t have time to think about stress. (M 1)
Discussion
This study reflects the psychiatric patients’ experiences in receiving community-based services provided by non-specialist community nurses both negatively and positively as follows:
Perceived barriers were related to their experiences of suffering due to their psychiatric symptoms, the side effects of treatment such as stiffness and lethargy, and the loss of daily life functioning (Mokwena & Ngoveni, 2020), but not recognized by the community nurse. They live with extremely sadness, suspicion, incapacity of feeling, etc., whereas they realize that nobody senses their real suffering, but it is also hard for patients to explain this to others (Mokwena & Ngoveni, 2020). Suffering from mental illness increases if patients perceive loneliness, hopelessness, and helplessness in not being cared for (Waring, 2019). All of these perceived barriers require a systematic review and demonstrate the importance of nursing care and treatment. The perception of fair treatment within a mutually secure relationship can help patients reach a common goal of well-being (Ireland et al., 2019).
Moreover, the home visiting of community nurses stigmatizing their patients as being mad is similar to the findings of other studies (Juntapim & Nuntaboot, 2018; Mokwena & Ngoveni, 2020). Mental illness often impairs a person’s capacity to perceive and to act with good judgment. Hence, such behavior and attitudes from members of society may aggravate the undesirable actions of the mentally ill, which will further create animosity between him/her and other members of the family and community, and thus increase the stigma. Challenging as these problems are, it calls for a deeper understanding and transferring of comprehensive knowledge in order to reduce stigmatization and suffering. These activities support patients in the rehabilitation process to improve their health by promoting internal growth (Juntapim & Nuntaboot, 2018). Thus, nursing practice guidelines, standard protocols, and continuing education modules for managing mental illness symptoms and reducing stigmatization may need to be further developed (Bussahong et al., 2019).
On the other hand, the participants also reflected the positive experiences of being cared for by community nurses, especially in mobilizing positive resources to support patients to have jobs, increase incomes, and create better opportunities in the community. Support in this way not only enhances patients’ self-esteem, self-independence, and stability in life with the ability to take care of themselves but also reduces stigmatization and empower patients to face life with dignity (Bond et al., 2001). Besides, patients and families accept the good intentions and efforts to support the well-being of the patients from community nurses. Positive characteristics create the feelings of trust and safety for patients and their families to feel free to recount and release their suffering experienced through their life crises thus ameliorating mental illness (Dolchalermyuthana & Wannagul, 2014). In the caring process, the community nurses put in effort and plays the most active role in physical treatment by managing and monitoring the side effects of medications, and yet they realize that patients still express the need for a psychiatric specialist in primary healthcare to provide and manage physical and psychological problems of patients who exhibit aggressive and violent behavior (Kazdin & Blase, 2011).
These issues of both perceived barriers and facilitators of providing palliative care to psychiatric patients need to be clarified and addressed to enable effective provision of community-based services. The point is how to create understanding and reframe the patient’s confidence in home visiting to be positive (Grant, 2015), and how to work with the community to reduce stigmatization in mental illness. Supporting the competency of community nurses can enhance the effectiveness of psychiatric care while providing primary care (Leung et al., 2019).
Limitation of the study
The sample size in this study was overwhelmingly dominated by patients with major depressive disorders, thus greatly limiting generalization to the entire psychiatric patient population.
Conclusions and implications for nursing practice
The Thai Mental Health Department has attempted to integrate psychiatric care into primary healthcare, but the findings of this study suggest only limited efficacy. The current system is one in which patients are discharged home to be cared for by their relatives without due consideration for their well-being. Health literature identifies conditions for ongoing care needed by patients who are cared for at home, and these include psychosocial, physiological, medical support, and social services, none of which were provided for the participants in this study. Most of these patients were given only medication, which is not adequate for the promotion of mental health which they so need. Therefore, community-based services should be concerned about developing psychiatric nursing competency of community nurses to offer basic extended services to patients in the communities, to assist family members who provide home care for patients to provide some support and to make referrals when required according to their needs. Moreover, changing strategies in home visiting should not only focus on patients’ mental illness but also expand to family members, neighbors, and communities to raise consciousness of the impact of mental health issues in order to reduce stigmatization of both psychiatric patients and others in the community. Raising awareness and sensitivity of the community to mental health and psychiatric issues and to integrate these issues with other physical diseases is necessary.
Footnotes
Acknowledgements
The authors wish to thank all participants and the Thailand Nursing and Midwifery Council for the supporting scholarship.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: author disclosed the financial support for the research from the Thailand Nursing and Midwifery Council.
