Living with schizophrenia in rural communities in north-east Thailand

ABSTRACT:In the rural villages of Thailand, rich social support networks exist that bond the community members to help each other. This study explored the barriers and facilitators of living with schizophrenia in Thai villages. A descriptive qualitative study was conducted using semi- structured interviews with individuals with schizophrenia, family members, and significant others. Content analysis of transcripts involved examining the data, recording observations, data reduction, and coding themes. Four main themes emerged from the narratives: (i) keep doing day- to-day activities as a way of life; (ii) support sustains day-to-day living; (iii) controlling medication side effects maintains daily living; and (iv) managing self maintains daily living. Self-regulation and social support are keys to moving from dependence to a normative life goal in rural communities. The patterns of living in the rural communities provide a strong social network as people with schizophrenia learn to lead successful lives. Using supportive families and community members as resources is an alternative and effective way of providing supportive care.

KEY WORDS:community, rural, schizophrenia, self-regulation, social support.

INTRODUCTION

Schizophrenia is a treatable, but usually incurable, dis- order affecting 21 million people worldwide (World Health Organization 2017). Although uncommon, schizophrenia has profound health and social conse- quences. It disrupts cognitive and psychosocial func- tioning and can impair a person's perceived quality of life (Juckel & Morosini 2008). People with

schizophrenia have poor physical health, often die pre- maturely, and have higher mortality rates (De Hertet al.2011). They typically die from indirect causes, such as suicide or health conditions stemming from poor lifestyles (Phanthunameet al.2010).

In Thailand, the prevalence of schizophrenia for those between the ages of 15 and 59 is estimated to be 8.8 per 1000 (Phanthunameet al.2010). The preva- lence is higher than found in global reports, although methodologies differ significantly, making cross-national comparisons unreliable.

Mental health services in Thailand are provided as part of a larger integrated healthcare network across 76 provinces. There are 17 psychiatric hospitals in major urban areas with governmental support for mental health at about 4% of healthcare expenditures (World Health Organization 2011). Community mental health services are generally limited (World Health Organiza- tion 2006), especially in district and subdistrict towns and villages. Yet, most (98%) Thai people with schizophrenia are living in the community (Phanthu- nameet al.2010) where families prefer to care for them at home (Sethabouppha & Kane 2005).

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Psychiatrists practise mainly in psychiatric hospitals, and it is rare for one to be available at a community/ district-level general hospital. Because few psychiatrists are available in rural areas (where over half the coun- try's population lives), general practitioners play an important though less prominent role in providing psy- chiatric services (Lotrakul & Saipanish 2006). Psychi- atric-mental health advanced practice nurses may be available in some districts, but they are scarce. In rural north-east Thailand, nurses at psychiatric outreach clin- ics are often the lead primary healthcare providers for people with schizophrenia and their families following hospital discharge.

BACKGROUND

Successful living in the community by people with schizophrenia depends heavily on adequate social func- tioning (Bellacket al.2007). Long-term stressors associ- ated with schizophrenia and daily living, especially with family members, can influence the course of the disor- der and responses to symptoms and social interactions (Phillipset al.2007). Positive symptoms of schizophrenia often distance a person from their social network, isolat- ing them from desirable interpersonal contacts (Tempieret al.2012). The subtle conditions they face are public stigma and internalized stigma, which also create barri- ers to recovery. Discrimination and other negative self- perceptions have been documented across multiple European countries (Brohanet al.2010) and in Thai- land (Wong-Anuchitet al.2016), particularly Thai rural areas (Burnardet al.2006). Stigma raises doubts even among professional caregivers whether people with schizophrenia could/should live in the community (Han- zawaet al.2012).

Long-term hospitalization for schizophrenia is no longer considered necessary in Thailand. Short-term in-patient care offers medical treatment during an acute phase until psychotic symptoms subside. Ortho- dox medical approaches to psychiatric care are the norm. Upon discharge, care is provided at a more familiar level with active family and community involvement (World Health Organization 2017). How- ever, people with schizophrenia can still experience the personal and social stressors of loneliness, anxiety, depression, keeping medical appointments, medication adherence, and conflict at home (Beebe 2010; Sung & Puskar 2006). Reducing depressive symptoms and strengthening cognitive functioning can improve social functioning (van Liemptet al.2017; Zhornitskyet al.2013). Coping strategies to handle life stressors and

symptoms are more effective when people with schizophrenia have a repertoire of cognitive and instru- mental approaches from which to draw (Phillipset al.2009).

In the rural villages of Thailand, rich social support networks exist that bond the community members to help each other. Rural communities, in general, are known for their 'dense social networks, social ties of long duration, shared life experiences,. . .and norms of self-help, and reciprocity' (Phillips & McLeroy 2004, p. 1663). This support may extend to those living with schizophrenia although there is no published evidence, to our knowledge, to indicate how support may func- tion in Thailand.

Study aims

The aim of this study was to explore the barriers and facilitators of living with schizophrenia in villages in one Thailand province. It is anticipated that the findings will facilitate understanding the normative goal of a produc- tive life for those with schizophrenia and be useful in developing strategies to help those with schizophrenia, caregivers, and professionals improve their lives.

METHOD Study design

This study employed a qualitative descriptive design by exploring individuals in their social context. By responding to face-to-face, open-ended interviews, individuals shared their own experiences that gave meaning to their lives and let the researchers summa- rize and share their stories with respect to the value of context (Sandelowski 2000).

Ethics.A university institutional review committee approved the study (#NU-MSU-IRB/0530.11-348). As people agreed to participate, key informants who knew the participants well (e.g. family members or significant others) were purposively recruited. The interviewer stressed the confidentiality of the research to all participants and key informants.

Setting and data collection

A psychiatric-mental health nurse at a psychiatric out- patient clinic at a subdistrict health promotion hospital in a north-eastern province in Thailand was asked to identify possible study participants and key informants.

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The nurse had a strong therapeutic relationship with the patients. She worked with health volunteers in the villages to gain access to patients.

Inclusion criteria were as follows: (i) having the diagnosis of schizophrenia or schizoaffective disorders for at least 1 year (as determined by a psychiatrist) using theDiagnostic and Statistical Manual(5th edi- tion); (ii) employed or doing meaningful work in the community; (iii) ability to attend to an interviewer's questions and communicate verbally in Thai; (iv) age over 20 years old; and (v) ability to give informed con- sent. Exclusion criteria were as follows: (i) known illicit substance abuse; (ii) diagnosis of bipolar or delusional disorders; and (iii) presence of overt psychotic symp- toms that would require hospitalization.

A second master's-prepared psychiatric-mental health nurse, who had previously conducted qualitative research, interviewed all the participants and their key informants at the outpatient clinic or at their places of residence. Everyone who was approached agreed to participate in the study and gave formal consent. Semi- structured interviews included questions that would eli- cit what facilitated and hindered their daily living and self-care activities. They were asked to describe rela- tionships with family members and others in the com- munity, their jobs, and working lives, and the support they perceived from families and community. Responses were used to explore further and under- stand how people with schizophrenia lived in small communities, and what it meant for them to live at home. The semi-structured interviews were designed to be open-ended, allowing participants to elaborate on the areas that they felt were important.

Interviews lasted between 90 and 120 min. They were terminated when the participants or key infor- mants became repetitive. Four participants were re- interviewed to obtain additional information. Partici- pant information was corroborated with the informants, where possible.

Analysis

Two authors manually coded the data; a third author verified the coding. All interviews were audio-taped and transcribed. Each transcript was checked for accu- racy against the tape.

Content analysis was used to describe how partici- pants lived in the community and to observe for simi- larities in experiences (Croweet al.2015). Hand-coded data were clustered, organized by categories, and then labelled as themes. Authors found the data and themes

were credible in that they had the 'ring of truth' based on their own clinical community experiences. Initial findings were shared with the participants or key infor- mants. Purposive sampling supported the transferability of the findings, including the descriptions and contextual details that were provided for interpretation. Comparing themes again with the participants' stories in each cate- gory enhanced credibility. Themes were enriched and developed further by qualitative details and descriptions of the participants. In addition, three nurses (one in adult nursing and one in psychiatric-mental health nurs- ing, and one monolingual (American English) nurse) met to reach consensus on the translation and syntax of themes and exemplar comments from participants.

FINDINGS

Five women and five men living with schizophrenia in five small villages in a north-eastern province in Thai- land volunteered to participate. Ages ranged from 33 to 69 years old; half were married. The duration of ill- ness from initial diagnosis ranged from 10 to 30 years. After the interviews were analysed, four main areas of living with schizophrenia emerged: (i) keep doing day- to-day activities as a way of life; (ii) support sustains day-to-day living; (iii) controlling medication side effects maintains daily living; and (iv) managing self maintains daily living.

Theme 1: Keep doing day-to-day activities as a way of life

Participants described how repetitive activities or keep- ing a routine helped them handle their daily lives. They kept doing the same thing every day. They gave a range of examples for how they maintained an order to living.

'I keep doing the same things every day. I wake up at 4 o' every day, clean theSala(temple hall), lay mats for monks, and ring the bell to tell people to come to the temple. I also clean toilets every day. . .wash my clothes daily after wearing them.... I don't think of anything, leave all thoughts out, and rush to do things after waking up. I take food out of the monks' alms-bowls and put it in plates then bring food to the monks. After that I eat with theMae-ork(women who offer food to the monks). After they leave the temple, I wash all the dishes. At 11 o'clock, I ring the bell and prepare things for the monks. After they finish eating and blessing, I have lunch with theMae-ork, wash dishes, then lie down and read' Participant (P) #3.

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While maintaining an order or routine to their lives, participants indicated that they did things as told. They maintained a daily life with some limitations in deci- sion-making. Some admitted they could not organize their lives without the influence of a caregiver. Living under supervision provided some external control to live in the community.

'I do things as my mother tells me. . .If she tells me, I do it but if she doesn't tell me, I don't do it' (P2).

'I do everything my mother tells me. If she says for me to take medication every day, then I take it every day' (P6).

Participants recognized the need to live with a per- son without a mental illness who provided some exter- nal control in making decisions. By giving up complete independence, they found emotional comfort and strength in a shared housing arrangement. This arrangement could be shared living in a normative role with a family member, such as working on the farm with relatives.

'I go to work in the rice field with my mother, work on our rice field together...listen to music with her...lie down together in front of the television and watch tele- vision' (P6).

Relatives were typically those with whom participants chose to live. The proximity to relatives brought emo- tional closeness and approval. However, shared housing could be with nonrelatives. It is not uncommon in rural Thai villages for single men to sleep occasionally or semi-permanently on the grounds of a Buddhist temple. Physical shelter would bring feelings of security but emotional attachment would be found with a relative. One participant (P3) stated, 'I choose to live in the tem- ple because I feel more safe and secure, more than other places. This temple is in my birth village, where my mother was burned [cremated]. . .I don't talk a lot with the monks. I usually talk with my cousin and have dinner together'. The abbot of the temple affirmed the routine nature of living at the temple and the acceptance of the participant by the community: 'He lives here [in the temple] and his job is to clean theSala, dish washing. He does the jobs neatly. . .People in the village are not afraid of him. We have known him since he was a child' (Abbot for P3).

Work and employment contributed strongly to the routines and order of participants' day-to-day activities. Work was seen as personally meaningful and significant to their lives, an assurance of normal living and a source of income with a sense of fulfilment by contributing to

others. Work gave participants a sense of involvement and belonging in the community. They tried very hard to rely on their own money and, when able, give some money to others. Work took a variety of forms that are typical to rural village life in Thailand, such as selling things, self/itinerant employment, or working on a farm.

'I want to work.I look for a job. I contact employers to get a job. . .Sometimes, someone asks me to work' (P8). 'I go from house to house to find work as a day worker and earn 100 or 200 baht a day...I don't ask for money from my grandmother' (P8). 'He works on the farm by himself. . .this year he works on oneraiof the farm [1600 square meters or about four-tenths of an acre]. He's eager to do it and looks to enjoy his nor- mal life' (Grandmother of P8). 'I wake up in the morn- ing, prepare meals for the day for my mother and daughter then go to the hospital to sell banana chips, after that drive atuk-tukto earn money' (P9). [Selling food near or inside a community hospital in Thailand is common and permitted. Atuk-tukis a 3-wheel, open air taxicab.]

Participants further indicated that earning money brought personal satisfaction. They expressed pride in earning an income, for example: 'I am so proud that I can work for an income. No one gives it to me' (P7). Another said, 'This year, I worked on the farm by myself. . .I worked only on one farm and earned money. (His mother said, "I allow him to prove him- self.") In the past, I worked in the sugarcane field and received money from cutting sugarcane...Now I ask to live alone and look after myself. I want to be inde- pendent' (P8). Although the latter participant may long for more independence and self-sufficiency, there is the subtle message by the mother (caregiver) that some external control is still needed over her son.

Some participants contributed monetarily to the family and to others. Some stated that they worked in their villages without earning money because they felt accepted by community members.

'I volunteer with others in the village to work in the temple and help with the funerals. I pick up stuff. I clean up tables and keep things in place after the cere- mony. I collect garbage in the village...I have friends and feel accepted by people in society' (P5). 'I gave 50 000 Baht from my saving account to my older sister for her to open a food stall. Some people borrow money from me' (P4). [Currency exchange fluctuates; 50 000 baht is about A$1800 to A$1900]. 'I intend to save money and will use to deal with hardship. I will use for my children studying. I volunteer to join in the ceremonial events. I help to serve food, wash dishes at

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funerals and at wedding ceremonies. The villagers accept me. They don't say bad things to me; they ask for my help' (P9).

Theme 2: Support sustains day-to-day living

Sources of external support made it possible to live in the community on a day-to-day basis. Participants linked emotional, tangible, and financial support to maintaining their lives and mental well-being. They identified that sources of support came from relatives and neighbours. Participants told how they assisted families to maintain daily routines. They spoke of how family members initiated work opportunities and also indicated there was mutual reciprocity-giving and taking-in support from neighbours. Participants spoke of the importance of having neighbours in the villages supporting them. They spoke of feeling that they belonged in the community and would spend more free time with family, friends, and neighbours. Villagers verified their support of the participants.

'I live with my older sister in her house. . .Every eve- ning after work, I talk with her, her children, and my other relatives. We eat together' (P10). 'He has meals and takes his medicine at my home. He bathes at our younger sister's house. We go to the hospital together [for follow up]' (Older sister of P10).

'I can go to my neighbour. We talk to each other, in particular with lay providers. I can talk with them about everything that I have done that day. We share food and eat together' (P5). 'The neighbours accept me. They don't say bad things (about the illness). They ask me to work with them' (P9). 'We feel comfortable having people with [schizophrenia] here because. . .[the village] has two people like this. Nobody blames them. . .they have had this for 20 years. The villagers know [about the illness] and are used to it' (Village lea- der where P4 lives).

'Some days when I don't have to wash clothes, I spend some time with neighbours. I talk with shopkeepers, my friends, and the villagers. Nobody dislikes me' (P8).

A significant source of financial support for the par- ticipants came from government welfare. The small amount of money enhanced their living and sense of belonging in the family and community. Participants used income not only for themselves but also shared with others.

'I get 600 baht for elderly welfare and 500 baht for dis- ability welfare. That is 1100 baht a month, which is enough. I pay my electric and water bills. I give money

to my niece. I save money to pay for my son's loan' (P1). 'I get 500-baht welfare allowance each month for my mental illness. . .I buy cigarettes and milk. I buy candy for the children' (P5).

The community nurse was an important additional source of support for participants in helping them overcome adherence problems. Antipsychotic medica- tion is part of the orthodox treatment for Thai people with schizophrenia. Medication adherence is consid- ered necessary for the participants to control symp- toms and maintain normal living. The nurse commented, 'We make home visits every month. In case the patients cannot go to the hospital for follow up, I go to the hospital to get the medication and take it to their homes' (nurse speaking in general about her community practice but specifically about P5, P6, P7, and P8).

Theme 3: Controlling medication side effects maintains daily living

Because taking antipsychotic medication is considered essential to the treatment of schizophrenia in Thai- land, participants experienced symptoms caused by medication side effects. Ordinary activities of daily liv- ing were hindered by the symptoms of drowsiness, disruption in thought processes, dry mouth, and trem- bling hands. The physical and mental changes they experienced created a burden for everyday living and deterred them from engaging in essential activities, and hindered their working and employment. They commented on the difficulties of taking the antipsy- chotic medication:

'[I] feel like my head is in a vice, sleepy, drowsy all day. I cannot think clearly and my brain feels dull' (P9). 'I think slowly. I feel sleepy, yawn all day. I can- not work hard. In the past, I built cottages. After I take my medicine, my legs are weak. I want to work as a gem cutter but I cannot because the medication makes my hands shake' (P5).

Participants found that fluids and mild stimulants helped with the medication's physical and mental side effects. They sought methods to deal with the discom- fort: Three stated, 'I drink a lot of water, sometimes about 10-20 glasses when my mouth is dry. Dry mouth happens more often than leg weakness' (P5). 'Some- times, I don't want to work because I feel so sleepy. I haveacupofcoffeetowakemeupandgooutto work' (P9). '. . .Sometimes, I drink an energy beverage' (P10).

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Theme 4: Managing self maintains daily living

The participants acknowledged they experienced emo- tional pressures and apprehensions of daily living. Some spoke of their mental symptoms and how they interpreted them. Thai culture and animistic beliefs shaped the substance and expression of these circum- stances. Participants commented how they attempted to manage the adverse experiences.

Subtheme 4.1: Managing stress for daily living

Perceived stress can be a significant disruption in nor- mal living because it may induce negative mental symptoms in people with schizophrenia. Prayer and spiritual meditation helped participants prevent or relieve the exacerbation of symptoms. Participants incorporated Buddhist devotional practices to manage their mental health, especially problems caused by stress, such as insomnia. They also sought help from family members. Participants indicated that talking things over and confiding with the family gave them emotional comfort and support. They commented on shared activities.

'If I feel uncomfortable in my mind, I pray, read reli- gious books, and do meditation. . .After that, I feel bet- ter and can go to sleep' (P3). 'Sometimes, I cannot sleep. I pray and meditate with my mother, then I go to bed' (P4).

'I talk with my father and mother when I have prob- lems' (P5).

'I can live because of my niece. I nurture this little girl and I love her...[smiling]. She calls me, mother, the same as my son does' (P1).

Participants sought help from professionals to deal with emotional problems. They relied on medical treat- ment if they sensed their symptoms were getting beyond what they could control. One participant com- mented how the nurses intervened when experiencing stressful problems: 'When I feel irritated, I want to lash out at someone. I go to the hospital to meet with the nurses. Nurses ask for help from the doctor. The doc- tor prescribes an injection of medication for me' (P9).

Subtheme 4.2: Living with hallucinations

Some participants experienced auditory hallucinations. The experiences were annoying and scary. Participants used ignorance or avoidance when experiencing what they perceived as abnormal or frightening thoughts. Others used animistic beliefs and practices, attempting

D. RUJKORAKARNET AL.to ameliorate that which they thought might or would

torment them.

'Sometimes, I hear the voice of someone that annoys me but not too much. I don't pay attention to the voice, 'Take my ears to the rice field and my eyes to the farm' [Thai proverb meaning to pay it no mind.] Therefore, I can survive' (P1).

'I hear a female ghost's voice, the voice ofphi popabout 6 or 7 p.m. I go to sleep right away' (P2). [Phi popis a demon that can possess a person's body.]

'If I still lived at my former wife's house, I would be dead. I left. She had the ghost under her power and control. Her father was killed by that ghost' (P3).]

DISCUSSION

Social support through a wide network of relationships significantly improves long-term functioning in people with schizophrenia (Tempieret al.2012). Soundyet al.(2015) concluded in a systematic literature review that living in the community with family and neighbours is an important factor in supporting people with schizophrenia to gain normative life goals after experi- encing high dependency during hospitalization. We found that being paired with a family member or living with someone without schizophrenia provides someone to supervise, coach, and guide them towards achieving normative life goals. Contrary to a prior study that found people with schizophrenia may tend to withdraw from community support (Rungreangkulkijet al.2002), we discovered that participants in rural villages are eager to live more fully and strive to rely not only on themselves but also those around them.

People living with schizophrenia can handle their emotions and daily lives through mutuality in commu- nity interaction. We found that family structural sup- ports, relatives, and neighbours are available in the Thai villages to enable the possibilities of achieving normative life goals. Social interaction helps to promote community integration and strengthens social compe- tence (Bozikas & Parlapani 2016). Social integration is related to the social network diversity individuals develop in the community (Mulleret al.2007).

Our findings suggest that a key regulating strategy to promote recovery is self-regulation with self-manage- ment skills. Strengthening physical and mental self-reg- ulation is important for successful social competence and functioning (Katakuraet al.2013; Kimhyet al.2012). Those living with schizophrenia can find ways to stabilize their social and spiritual health as part of

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normal daily living (Soundyet al.2015). Positive self- management contributes to building self-esteem and hope and reducing internalized stigma (Lysakeret al.2007).

Employment or meaningful work is a significant motivation of self-management (Katakuraet al.2013). Meaningful work, interaction with others, and the for- mation of support networks bring an enhanced quality of life and satisfaction to people living with schizophre- nia (Wielandet al.2007). We found that tangible and intangible supports buffered the participants' normal life's stresses. Prior evidence suggests that forces within Asian collectivist communities and developing a sense of identity and belonging promote the recovery process (Virdeeet al.2017). The more support that bonds and anchors people with schizophrenia to their families, neighbours, and community, the higher will be the sense of belonging (Wielandet al.2007).

As part of the development of personality over the course of a life, feelings of security play an important role (McAdams & Olson 2010). Financial security for those living with schizophrenia in Thai villages is a sig- nificant aspect of achieving the normative life goal. We found that this is strengthened when they engaged in meaningful work, especially for wages to contribute to their family. In addition, the social security system under Thailand's Ministry of Labour and Social Wel- fare provides an allowance to those with a mental dis- ability (Royal Thai Gazette 2009, 2010). Prior evidence suggests that vocational status influences social network diversity of those with mental illness in that being employed and having an income strengthen community participation (Mulleret al.2007). A study of Chinese living with schizophrenia in rural villages reinforces the idea that better economic conditions foster more enduring health outcomes (Ranet al.2017).

The biomedical literature on schizophrenia supports the importance of adherence to medication treatment for preventing the relapse of psychotic symptoms (Soundyet al.2015). Even those who disavow the medical paradigm of schizophrenia as biologically based acknowledge that drugs 'can suppress and reduce the most dramatic manifestations of mental disturbance' (Moncrieff & Middleton 2015, p. 267). In Thailand, a combination of medication and family support has been suggested as a cost-effective approach for treating schizophrenia (Phanthunameet al.2012).

Religious faith and spiritual practices of prayer and meditation are a large part of what it means to live in rural Thai villages. Faith and culture lead Thais to accept things that cannot be changed (Wong-Anuchit

et al.2016). Soundyet al.(2015) found that a sense of belonging in the community with responsibility to its members is a result of reflection and self-evaluation of behaviours from the self-regulation process and from the desire to participate in the community. With a sense of belonging, people with schizophrenia recap- ture their own social and emotional wellness. Without the skills, mental relapse occurs more quickly.

Other researchers have reported that residing in the community leads people to have a greater sense of community responsibility than those living in care facil- ities (Mausbachet al.2008). Although not specifically mentioned by the participants, prior studies have shown that a sense of agency extends not only to main- taining work and social interactions but also includes attending school, managing finances, volunteering, keeping house, and taking care of children (Bowieet al.2006; Mausbachet al.2008).

CONCLUSION

The patterns of living in the rural villages provide a strong social network as people with schizophrenia learn to lead successful lives. With family and commu- nity support, medication, self-regulation and appropri- ate self-management skills, and occasional intervention by psychiatric-mental health nurses, those living with schizophrenia can accomplish daily activities, work, and can help others. The support of families and communi- ties is a significant social resource in the restorative process. This is particularly true given the shortage of professional healthcare providers in rural communities.

Limitations

Interviews and analysis were conducted in Thai. Although every attempt to capture the nuance of lan- guage has been made when reporting the findings in English, shades in meaning can be lost during transla- tion. The study was conducted in one of the 76 pro- vinces of Thailand; therefore, generalization to all Thai people with schizophrenia should be inferred cau- tiously.

RELEVANCE FOR CLINICAL PRACTICE

The role of professional nurses and other caregivers is to intervene during difficult times and keep life nor- malized by averting rehospitalization. In addition to the evaluation of psycho-biological health and medication adherence posthospitalization, attention is needed to

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widen and strengthen the social network diversity of people with schizophrenia. Social and community inte- gration includes families and community members as healthcare resources, as well as locating others in the same and neighbouring communities living with schizophrenia. Using families and community members as healthcare resources is an alternative and effective way of providing supportive care.

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