This article has Open Peer Review reports available.
Qualitative process evaluation of a psycho-educational intervention targeted at people diagnosed with schizophrenia and their primary caregivers in Jordan
- Abd Al-HadiHasan1Email author,
- Patrick Callaghan2 and
- Joanne S. Lymn2
https://doi.org/10.1186/s12888-017-1225-2
© The Author(s). 2017
Received: 28 June 2015
Accepted: 1 February 2017
Published: 13 February 2017
Abstract
Background
Schizophrenia is a serious form of mental illness that often requires long term care. Empirical findings indicate that combining a psycho-educational intervention (PEI) with neuroleptic medication to treat schizophrenia is effective. However, there is little information on the therapeutic mechanism of PEIs.
Methods
A qualitative process evaluation was conducted with a purposive sample of people diagnosed with schizophrenia (PDwS, n = 8) and their Primary Caregivers (PCs, n = 9) who had received PEI as a part of an exploratory randomized controlled trial. Semi-structured interviews were conducted to explore potential processes underpinning any observed effect. Thematic analysis was used to analyze and identify prominent patterns in the data. Interviews were conducted between April 2013 and August 2013.
Results
Three themes emerged from the qualitative interviews, ‘Awareness of schizophrenia’, ‘Positive impact on health and wellbeing’, ‘empowerment and enhanced confidence’, which described the variety of experiences with the intervention, although most reported that the intervention was acceptable and valued.
Conclusion
This study identified that individual understanding varied between PDwS and PCs and led to differences in the ways that they used knowledge gained from the PEI in everyday situations. These data support the importance of improving understanding of schizophrenia by PDwS and their PCs to enable them to benefit more fully from medication.
Trial registration
Current Controlled Trials ISRCTN78084871. Retrospectively registered 28 December 2015.
Keywords
Background
Worldwide, schizophrenia is a serious form of mental illness that strikes people in adolescence or early adulthood [1] and is listed as the eighth leading cause of disability-adjusted life years (DALY) in people aged 15–44 years. It is estimated that the economic cost of treating schizophrenia totaled approximately €93.9 billion across Europe in 2010 [2]. Interventions which reduce the morbidity and mortality burden associated with schizophrenia are therefore important and have received critical attention [3].
Data derived from a recent World Health Organisation (WHO) report, suggests that 305 individuals per 100,000 of the Jordanian population suffer from mental illness, this equates to approximately 18,300 individuals, of whom around half have a diagnosis of schizophrenia [4]. In addition, mental health services in Jordan are not well prepared to provide basic care for mentally ill people compared to developed countries. For instance, the number of psychiatric beds in Jordan is limited to around 8.27 beds per 100,000 of the population. Mental health professionals in Jordan face high workloads, with as many as 150–200 service users visiting clinics daily [4]. In Middle Eastern countries, including Jordan, the number of people who live with schizophrenia is about 3.5 million [5]. The lack of specific documentation reflects the basic infrastructure of the mental health system, which remains nascent, as well as the failure of mental health services to undertake appropriate documentation or conduct non-pharmacological specialised care [4].
Family interventions have been developed in response to the fundamental part that families play in supporting relatives diagnosed with Schizophrenia; 50%-80% of PDwS live or have daily contact with their families [6]. The theoretical rationale for these family interventions stems from previous studies showing that PDwS who live with families that have high emotional expression (EE) are more likely to relapse than those who live in low EE families [7, 8]. For instance, when the family caregivers expressed a high EE (hostility, emotional over involvement and critical comments) towards their mentally ill relative, it led to a higher relapse rate [9, 10]. Reviews of family intervention studies targeted at PDwS and their primary caregivers have consistently demonstrated positive impact on PDwS’ knowledge of schizophrenia, social, and functional recovery [8]. Psychoeducational interventions are the commonest approaches with families in developed countries [11]. The PEI model focusses on teaching PDwS and their PCs about schizophrenia, treatment, medication and managing side effects, creating low environmental stress through problem-solving strategies and coping mechanisms for illness symptoms and disruptive behaviour. Further information about the PEI used can is published elsewhere [12].
Whilst PEIs have used a variety of formats including face-to-face lectures and seminars and online, a less intrusive and more cost-effective method of providing psycho-education interventions to PDwS and their primary caregivers using a booklet format was designed for use in Jordan. The rationale for this choice was based on the practicalities of delivering this type of intervention in the wider healthcare context in Jordan. Financial constraints prevented the current study paying costs for participants to travel to sessions, as has occurred in some previous studies [10, 11], moreover provision of these costs would not be supported in an ongoing manner following study completion. In addition, and perhaps more importantly, low engagement, and high attrition rates have been seen with studies that have employed face-to-face formats [12, 13]. There is significant social stigma towards mentally ill people and their families in Arab ‘cultures’ which could deter participants from attending PEI in a face-to-face format [14, 15]. The lack of consistent and reliable internet connections also made the use of online delivery of material impractical. As a result, the research team adopted the booklets supported by follow-up phone calls to disseminate PEI, this format was considered to be more consistent and less demanding and intrusive in terms of participants’ lifestyles thus, overcoming the barriers previously associated with didactic or online formats.
Beliefs about the aetiology of mental illnesses vary across communities and cultures worldwide; some view schizophrenia as a character weakness and as laziness or punishment for not respecting ancestors [16–18], whereas others attribute mental illness to sudden fright, possession of evil spirits, use of magic, head accidents, bad genes, emotional trauma, punishment from God, or the ‘evil eye’ [19, 20]. Such beliefs about the causes of mental illness result in social stigma with the view that mental illness is the result of a person’s weak faith [21] or is punishment for one’s sins [22]. This stigmatisation of mental illness is often associated with a reduction in those affected seeking treatment from a mental health service, engaging in rehabilitation interventions, and adhering to medication [23, 24]. Similarly, young people with mental illnesses are often reluctant to seek treatment due to the fear that self-disclosure may be perceived as an individual weakness or may bring shame to one’s family [25]. In addition, in Arab countries, the distinction between physical and psychological health is not common, and has not been as historically prevalent as in so-called Western Countries. Arab-Muslim literature reveals that Arab-Muslims do not distinguish emotional or psychological distress from physical illness, and a majority of the population tend to somatise their illness, presenting physical symptoms to express an emotional disorder [19, 26, 27]. Consequently, treatments for mental illnesses are often sought from traditional and spiritual healers to the exclusion of professional mental health services [21], as they are perceived as less stigmatising and are widely considered suitable by clients. This finding is consistent with a qualitative study of Iranian families to explore their lived experience about mental illness showing family relatives’ understanding of mental illness was influenced by myths and used traditional methods as the first line of treatment [13].
Data from our recent RCT demonstrated that PDwS who received PEIs and treatment as usual (TAU) had better knowledge of schizophrenia, fewer psychiatric symptoms and fewer relapses compared with matched controls receiving TAU. In addition, PCs who received PEI and TAU reported better knowledge of schizophrenia, reduced burden of care and improved quality of life than PCs receiving TAU. The positive effects of PEI were maintained post-intervention and at 3 months follow-up in PDwS and PCs [28]. These findings are consistent with those from Iran [14], but this study used a randomized controlled trial solely and how the PEI influenced participants outcomes could not be established.
The RCT method is considered the gold standard to evaluate the effectiveness of the intervention (independent variable) on participants’ outcomes (dependent variable) through dealing with bias [29]. Whilst the RCT is considered a powerful method to provide a picture about the effectiveness of an intervention, it cannot provide an understanding of why particular responses are given. Using process evaluation however, allows the researcher to reflect on data collection, to add a deeper understanding of the phenomena under study and to determine the processes that may mediate any observed intervention effects [30]. The UK Medical Research Council guidelines for developing and evaluating complex interventions, such as RCTs, recommend integrating process evaluations alongside outcome data to maximise the interpretation of the outcomes [30]. Process evaluations can allow for the examination of participants’ views on the intervention, investigation into any contextual factors and determination of processes that may mediate any observed intervention effects [30, 31]. The use of qualitative methods have been recommended to explore and understand peoples’ experiences and perceptions of healthcare interventions in order to understand more about the dynamics of participation. This study reports the results of a process evaluation which used semi structured interviews to explore the acceptability and processes underlying any observed effect of the PEI.
Previous data examining participants’ experiences of PEI, is scarce. One previous study, reported improvements in knowledge of schizophrenia and in family caregivers’ attitudes towards their relative’s illness [32] but did not include PDwS in the qualitative component of the study. Data collection in this study was through focus groups rather than by interview, which may have inhibited family caregivers' ability to talk freely about sensitive issues in front of other participants. The only published work conducted with PDwS, emphasised the importance of the nature of the information received in the PEI but did not examine potential processes [33]. This study provides the first comprehensive investigation of the impact, and potential mechanisms underlying this impact of PEI. The study addressed the research question “How do participants (PDwS and PCs) experience the delivery of PEI?”.
Methods
Study design
A qualitative process evaluation was undertaken, using audio-recorded face-to-face semi-structured interviews, with PDwS and primary caregivers. This research approach is best suited to achieve a deep understanding of experiences and views from the perspective of the patients who received PEI. In this study the researchers were interested in a descriptive evaluation of our intervention (PEI) based on participant’s views and experience. Although the methodological theories (i.e. phenomenology, grounded theory or ethnography) are useful and productive in generating new insights to social behaviour [14], some authors argued that there is no need to sign up to a particular method in order to do qualitative research [15, 16]. Therefore, we used a pragmatic approach in this study. By not adopting a methodological theory in the current study, the authors tried to focus on answering the research questions, and explaining the quantitative data without the restrictions of a particular theory. Our approach had the capacity to clarify and explain the trial findings.
Participants & procedure
The goals and contents of PEI
Booklet Number | Goals | Contents |
---|---|---|
One | To understand the nature of schizophrenia and its symptoms. | - Diagnosis of schizophrenia according to DSM-IV. - Truths and myths about schizophrenia. - Symptoms of schizophrenia. |
Two | To understand the causes of schizophrenia and the importance of the family in supporting affected individuals. | - Causes of schizophrenia - Stress vulnerability model - Role of the family. |
Three | To improve participants understanding of antipsychotic medications and improve medication compliance. | - Side effects of medications. - Mechanism of action of medications. |
Four | To review relapse triggers & warning signs and improve participants' ability to recognise these. | - Early warning signs of relapse. - Common relapse triggers. - Relapse management strategies. - Burden of care. |
Five | To determine common problem sources in the home. To initiate techniques to solve problems. | - Problem-solving interventions in schizophrenia. - Practical advice for problem-solving. |
Six | To identify stress triggers and improve stress management techniques. | - Stress management skills and strategies. |
Sample
Characteristics of interview participants compared to trial participants
Characteristic | Trial sample - number | Interview sample – number (% of trial sample demographic) | ||
---|---|---|---|---|
PDwS | PC | PDwS | PC | |
Participants | 58 | 58 | 8 (14%) | 9 (16%) |
Gender: | ||||
Male | 38 | 10 | 6 (16%) | 0 (0%) |
Female | 20 | 48 | 2 (10%) | 9 (19%) |
Age (years): | ||||
≤ 20 | 2 | 0 | 0 (0) | 0 (0) |
21-30 | 7 | 2 | 2 (28) | 1 (50) |
31-40 | 25 | 16 | 3 (12) | 3 (19) |
41-50 | 19 | 21 | 1 (5) | 4 (19) |
≥ 51 | 5 | 19 | 2 (40) | 1 (5) |
Education Level: | ||||
Primary School or below | 18 | 15 | 2 (11) | 2 (12) |
Secondary School | 22 | 14 | 2 (9) | 3 (21) |
College or above | 18 | 29 | 4 (22) | 4 (14) |
Diagnosis: | ||||
Schizophrenia | 32 | n/a | 4 (13) | n/a |
Schizoaffective disorder | 26 | n.a | 4 (15) | n/a |
Illness duration (years) | ||||
≤ 2 | 6 | n/a | 2 (33) | n/a |
3-5 | 12 | n/a | 2 (17) | n/a |
≥ 5 | 40 | n/a | 4 (10) | n/a |
Relationship to PDwS: | ||||
Parent | n/a | 24 | n/a | 1 (4) |
Sibling | n/a | 10 | n/a | 3 (30) |
Spouse | n/a | 20 | n/a | 5 (25) |
Child | n/a | 4 | n/a | 0 (0) |
Data collection
Interview schedule
1. Background |
• Welcome and thank participant |
• Introduce interview topics |
2. Disease History |
• How many years ago were you/ your relative diagnosed with schizophrenia? |
• How long had you / your relative been ill prior to diagnosis |
• PCs – how did you find out about your relatives treatment and care? |
• How did you feel when you/your relative was diagnosed with schizophrenia? |
3. Impact on social life |
a. How did your / your relatives disease impact on you / your life (social, working and economics)? |
b. PCs – how much support have you had in caring for your relative |
4. Impact of education intervention? |
a. Did you read the information booklets |
b. If no – why didn’t you read the booklets |
c. If yes – did you find them useful – has your knowledge level improved |
d. If yes (PDwS) - do you feel that the increased knowledge of the disease has helped you manage your disease symptoms |
e. If yes (PCs) - do you feel that the increased knowledge of the disease has helped you cope better with the burden of caring |
5. Information needs |
a. What was the most useful component of the educational booklets |
b. What was the least useful component |
c. Are there any other aspects of the disease which you would have liked to have been included |
d. How did you feel about the timing of the intervention with education booklets being made available every fortnight |
6. Format of education delivery |
1. How did you feel about the use of booklets to deliver this knowledge? |
a. Is there any other delivery format that would have been easier/better for you/your PC? |
7. Experience of study |
1. Why did you take a part in this study? |
2. What are you expectation when did you participate in this study? |
3. Has taking part in this study altered your view about schizophrenia? Caring for relatives with schizophrenia? If so please explain? |
4. Would you recommend this educational intervention to other patients/carers? Why? |
The purpose of the interviews was to explore the acceptability of the intervention and examine potential processes underlying the observed effects from the RCT [20]. Interviews were conducted by one of the authors (AH), a trained interviewer, at a time and a location suitable to each participant. The majority of these interviews were completed in a private room in the mental health clinic; however two interviews were conducted at the participants’ homes, at their request. Four interviewees were pairs of PDwS and their PCs. However, these interviews took place separately in order to ensure their responses were not influenced by each other. No time limit was imposed on the interviews, but the average time taken for most interviews was between 45–60 min. Before commencing interviews, participants were reminded that they could ask any questions or refuse to answer any question. In addition, they were informed about their right to stop or withdraw from interviews at any time without a reason. All participants were interviewed once and the interview was audio-recorded, enabling the interviewer to be more focused and interactive with interviewees in order to follow the issues raised, to ask for clarification on some issues and to keep the interviews focused on the research phenomena. Audio recording also enabled exact transcription of respondents’ narratives, avoiding the problems of recall and note-taking.
All interviews were carried out in Arabic, transcribed in Arabic and translated into English for purposes of analysis. Transcripts were then back-translated into Arabic to ensure that no loss of meaning of participants’ experience had occurred, and to validate the conceptual equivalence of translation [35]. English version transcripts were read by both AH and JL. AH conducted the initial coding for all interviews, JL performed initial coding for a random selection of interviews and coding themes derived from the interviews were compared.
Data analysis
- 1.
Interview transcripts were read and re-read repeatedly in order to obtain a broad understanding of the participants’ views [18].
- 2.
Initial codes were generated; a complete coding approach was utilized in order to identify anything and everything across the data set which might have relevance to the research question [21, 22].
- 3.
All similar codes or meanings were collated together into potential themes. Relevant extracts from the data set were collated to form themes [21, 22]
- 4.
Potential themes were reviewed and a thematic map generated.
- 5.
Identified themes and subthemes were checked against each other and the dataset to ensure they were coherent, distinctive, consistent and working together.
- 6.
Themes were reflected at the semantic level of data with illustrative quotes from participants selected [21].
Rigour
The maximum variant purposeful sampling used in this study ensured that all sub-groups within the research setting were given a voice so that comparisons could be used to construct commonalities and differences in interpretation across groups. The researcher involved in interviewing participants had previously been engaged with participants in terms of conducting baseline measures and making follow-up phone calls to check receipt of the PEI. This researcher was not involved in the collection of follow-up data so had no knowledge of the impact of the PEI on individual PDwS or PC outcome measures. Similarly, all interviews were conducted prior to the analysis of the quantitative data generated in the RCT, using a schedule designed at the outset of the study, to explore the experience of the PEI on PDwS and their PC without being influenced by knowledge of the impact of the PEI on outcome measures.
Consolidated criteria for reporting qualitative studies: 62 items checklist
No. Item | Guide questions/description | Considered |
---|---|---|
Domain 1: Research team and reflexivity | ||
Personal Characteristics | ||
1. Inter viewer/facilitator | Which author/s conducted the interview or focus group? | Yes |
2. Credentials | What were the researcher’s credentials? e.g. PhD, MD | Yes |
3. Occupation | What was their occupation at the time of the study? | Yes |
4. Gender | Was the researcher male or female? | Yes |
5. Experience and training | What experience or training did the researcher have? | Yes |
Relationship with participants | ||
6. Relationship established | Was a relationship established prior to study commencement? | Yes |
7. Participant knowledge of the interviewer | What did the participants know about the researcher? e.g. personal goals, reasons for doing the research | Yes |
8. Interviewer characteristics | What characteristics were reported about the inter viewer/facilitator? e.g. Bias, assumptions, reasons and interests in the research topic | Yes |
Domain 2: study design | ||
Theoretical framework | ||
9. Methodological orientation and Theory | What methodological orientation was stated to underpin the study? e.g. grounded theory, discourse analysis, ethnography, phenomenology, content analysis | Yes |
Participant selection | ||
10. Sampling | How were participants selected? e.g. purposive, convenience, consecutive, snowball | Yes |
11. Method of approach | How were participants approached? e.g. face-to-face, telephone, mail, email | Yes |
12. Sample size | How many participants were in the study? | Yes |
13. Non-participation | How many people refused to participate or dropped out? Reasons? | No |
Setting | ||
14. Setting of data collection | Where was the data collected? e.g. home, clinic, workplace | Yes |
15. Presence of non-participants | Was anyone else present besides the participants and researchers? | Yes |
16. Description of sample | What are the important characteristics of the sample? e.g. demographic data, date | Yes |
Data collection | ||
17. Interview guide | Were questions, prompts, guides provided by the authors? Was it pilot tested? | Methods |
18. Repeat interviews | Were repeat inter views carried out? If yes, how many? | N/A |
19. Audio/visual recording | Did the research use audio or visual recording to collect the data? | Yes |
20. Field notes | Were field notes made during and/or after the interview or focus group? | Yes |
21. Duration | What was the duration of the inter views or focus group? | Yes |
22. Data saturation | Was data saturation discussed? | Yes |
23. Transcripts returned | Were transcripts returned to participants for comment and/or correction? | No |
Domain 3: analysis and findings | ||
Data analysis | ||
24. Number of data coders | How many data coders coded the data? | No |
25. Description of the coding tree | Did authors provide a description of the coding tree? | No |
26. Derivation of themes | Were themes identified in advance or derived from the data? | Yes |
27. Software | What software, if applicable, was used to manage the data? | No |
28. Participant checking | Did participants provide feedback on the findings? | No |
Reporting | ||
29. Quotations presented | Were participant quotations presented to illustrate the themes/findings? Was each quotation identified? e.g. participant number | Yes |
30. Data and findings consistent | Was there consistency between the data presented and the findings? | Yes |
31. Clarity of major themes | Were major themes clearly presented in the findings? | Yes |
32. Clarity of minor themes | Is there a description of diverse cases or discussion of minor themes? | Yes |
The domains of this checklist (research team and reflexivity, study design, and data analysis and reporting) provide a transparency of research methods that allow readers to assess the trustworthiness and transferability of the findings of the primary study to their setting [24].
Results
Sample description
The mean age for PDwS was 31.8 years and for PC was 48 years. The majority of participants were female primary caregivers and male PDwS. More than half of interviewees had attained secondary levels of education or higher. The majority of primary caregivers were female and more than half of PDwS had been diagnosed with schizophrenia for fewer than five years.
Interview data
Themes and Subthemes Emerged from People Diagnosed with Schizophrenia and Primary Caregivers Interviews
Awareness of schizophrenia
This theme describes the impact the PEI on enhanced illness cognition and captures the effect of this enhanced understanding on the ability of PDwS and their PCs to recognise and regulate clinical symptom expression.
Prior knowledge of schizophrenia
“….. I thought that my illness was considered as many personalities inside my body […] especially when I heard voices…..” (PDwS7)
“….. We believed that [schizophrenic] patients had multiple personalities…..” (PC4, Wife)
“….. In addition to that, we believed these symptoms were regulated by other bodies that lived inside my body or that it was related to sorcery….” (PDwS5)
“….. Furthermore, I have {ah, ah…..} believed the cause of her illness to be due to a mother’s neglect, because I {ah} had worked outside the home for a long time previously…..” (PC6, Parent)
“….. When I read the booklet, I [PC] felt ashamed and cried […] as the meaning of [schizophrenia] had changed for me. The booklets said that schizophrenia does not impact on personality and is connected with cognition and emotion…..” (PC1, Wife)
"….. Mental illness is looked down upon. I can’t tell others I have a mental illness or I can’t visit a psychiatrist because he is associated with crazy people and it is said that he has lost his mind….." (PDwS1)
“….. It is a difficult topic to talk about in our culture. We live in the village area where people are not educated …..” (PC3, Sister)
Understanding of medication information
“….. The booklet says that stopping the medication without informing the physician will lead to serious [relapse], and it’s so hard to return a patient’s status to baseline […..]……so I changed this bad habit, and I became more adherent with medications and never tried to stop the medication since I read this information…..” (PC1, Wife)
“….. It is important to know about medication [….]. I knew the side effects of the medication, but I believed these side effects […] such as fatigue and muscle spasm were intended behaviour to just sleep….” (PC8, Wife)
“….. I think it’s more important for me to know about living and caring with [schizophrenia] than its medication […] my knowledge about his illness is very limited…..” (PC9, Wife)
“….. If I observed that the medication is not suitable for him and the illness symptoms such as hearing voices or talking to no one have returned, I can return back to the physician to review this medicine…..” (PC4, Wife)
“….. Sometimes he takes a tablet, but he moves it out when I leave. Now I stay until I am sure that he chewed and/or swallowed the tablet. Previously we had a problem when he used to forget to take his medicine …..” (PC4, Wife)
“….. Previously, my family placed the tablets in my food or juice [25], because I refused to take them […]. However, now I take my medication on time [….]. I put my medication in the dining room to take it right after dinner" (PDwS7)
A key conclusion drawn from the interviews suggests that the PEI contributed effectively to improving their awareness of the importance of medication and changed their attitudes towards it. Therefore, they became more empowered to actively engage in the treatment regimen.
Impact of improved illness understanding
“…..One of the booklets provided suitable information about [relapse]. Sometimes, I saw or felt {ah…} her change after a stabilised or calm period. When these changes occurred [….]. I knew this is a [relapse] sign and the booklets helped me handle her in this situation to avoid [a relapse]…..” (PC3, Sister)
“….. Moreover, the educational booklets informed us about [relapse] symptoms and causes, so we try to avoid these causes as much we can. When I see some symptoms appear in him such as disorganised speech, non-compliance with medicine, changes in facial expression as uncontrolled movement in the eye or irritability, excessive crying or joking we go to the physician immediately. As a result, the physician adjusts the medication dosage which might prevent hospital admission” (PC5, Sister)
“….. The relapse booklet discussed relapse prevention techniques, so that it is possible to differentiate between illness symptoms and relapse signs…..” (PDwS6)
“….. When I learnt the different ways of diagnosing the illness and its causes {ah, ah…}, I figured out how I can treat these causes. For instance, when I found out that one of his illness causes was hereditary, I have become more aware for illness symptoms if they ever appear on our children. Especially since one of his brothers has the same illness.…..” (PC4, Wife)
“….. Sometimes I thought I completely recovered from my illness, especially when the sounds disappeared, but the educational material said {ah…} this illness is not curable and if I stopped taking […] the required medication, I could have a relapse…..” (PDwS7)
“….. Furthermore, {…ah…} I can now explain some of my symptoms and attribute them to my illness or medication or others reasons. For example, constipation is considered to be a medication side effect {ah}. Also, I did not know that sexual dysfunction was due to my illness…..” (PDwS6)
“….. The relapse booklet discussed relapse prevention techniques, so that it is possible to differentiate between illness symptoms and relapse signs…..” (PDwS6)
"….. I think that teaching family about these signs is better because when I relapse I cannot feel these signs and cannot use my knowledge to manage these issues….." (PDwS8)
Positive impact on health and wellbeing
The PEI helped increase participants’ understanding of schizophrenia, and equipped them to cope with the processes associated with daily living more effectively. The sub-themes which came out from the data were associated with improving both coping skills and caregiving skills, reduced stress and anxiety and motivation.
Improved coping skills
“….. But education improved some of the practical aspects in our life, as I felt some positive changes in our life [.....]. Having information about [schizophrenia] helped us to improve our communication methods with patients. I used to communicate with him in a tough and stringent way and often neglected him, but now I changed and listen to him….. ” (PC9, Wife)
“….. I did not spend a lot of time talking to him […]. I understand now what my role is in supporting him and to make sure he also understands his role in the treatment plan, hence, our communication is improved…..” (PC9, Wife)
“….. Improving our knowledge of his illness helped us to change our attitudes towards him and improve our communication in certain ways, so that it reduced our problem levels as well as emotionally exaggerated level” (PC2, Wife)
“…..We intended to minimise the time that she spent alone and encouraged her to interact with us to reduce her isolation [….].” (PC7, Sister)
“….. Once when I spoke with him, he suddenly started to talk with himself {….}. He was very nervous and started to shout at me […]. At that moment I felt so scared that I went outside the house…..” (PC8, Wife)
Improved caregiving skills
“….. I am always scared in caring and monitoring her, because mental illness requires specific care and preparation and is not like somatic illness…..” (PC3, Sister)
“….. When we found out the causes of her illness, we tried to avoid what we could avoid to remove these causes. For instance, when I read that stress and pressure were the main sources for mental hospital admission, we tried to minimise the stress level in the home environment …..” (PC3, Sister)
“….. I was saying {ah…} that I often visit my husband’s family to express to them my concerns about my husband behaviours […]. When I feel depressed or anything I go to visit them to vent my feelings. …..” (PC1, Wife)
“….. My mother was treated for depression. This happened to her due to lack of faith and worship, but when she prayed, all of these conditions eliminated […]. I ask him to pray so as to improve his condition and increase his activity…..” (PC9, Wife)
“….. If I did not change my reactions to his behaviour {…} he might have relapsed, and it may have impacted negatively on me and my family members [….]. He might {ah} have hurt me or my children […] I meant to say that when I changed my reactions with him he was being calmer….." (PC4, Wife)
Reduced stress & anxiety
"….. I felt more power when I had information about my illness to face it […]. I reminded myself I should be stronger than this to prevent its progression….." (PDwS2)
“….. As I said I was a nervous man, so I used the booklet’s suggestions in controlling stress and nervousness by doing physical exercise, listening to music and others…..” (PDwS1)
Being motivated
“….. My health status now is comparatively better. Also, I started to join my carers when they go to clinic monthly” (PDwS3)
“….. I am optimistic and motivated to take my medication so that I have better chances of recovery and controlled my illness progression…..” (PDwS4)
The interpretation of the data presented above suggests that, regardless of the illness duration, the PEI positively impacted PDwS awareness. This in turn altered their views of their illness and encouraged them to accept it and to be more compliant with treatment regimens, including medication and appointments. It is evident that the current treatment approach for these patients in the government clinics did not adequately meet their needs.
Empowerment and confidence
This section describes how having schizophrenia impacts on a primary caregivers’ and PDwS social life and discusses how the PEI contributed in improving their personal self-confidence and social interaction.
Self-confidence and socialisation
“….. […] it means {ah} I am responsible for everything; I need to manage the conditions in my home alone […]. I have to take decisions alone and I am responsible for looking after my children alone…..” (PC4, Wife)
“….. Moreover, embarrassment and guilt because of her mental illness urged us to minimise our contact with others in order to reduce the number of people who knew about her illness…..” (PC3, Sister)
“….. My social life was impacted as a result. I was scared that his personalities would appear in front of other people who would observe it. But when I read that the illness impacts on cognition. Hence, I became more social and visited my family and had lesser fear than before, giving me some kind of happiness now…..” (PC1, Wife)
“….. Improving our understanding of illness enhanced our self-confidence that improved our moral support which allowed us to interact with others without shame or less respected for people with this disease…..” (PC5, Sister)
“….. My participation in the study {ah} provided me with a positive picture about his illness, so my [phobia] in my interaction with him reduced. I now became more reflective in problem situations, so he did not need to hit or hurt me like previous time…..” (PC8, Wife)
"….. I was afraid to interact with others because I had a fear {…} of speaking any inappropriate words, or making any inappropriate action or behaviour….." (PDwS4)
"….. Because mental illness among people is taken to mean that a man is crazy and I wanted to be away from all of these negative views, I preferred to be away from others….." (PDwS8)
"….. Many of my friends when they knew I had a mental illness, decided to discontinue our relationship {ah…} because we have a stigma in our community and they fear having some of these negative views associated with them […]…." (PDwS4)
"….. When I knew my illness symptoms, it gave me a sense of confidence, I felt brave. I knew this social anxiety or stress was related to the illness symptoms, not anything related to my personality. ….." (PDwS8)
“….. I feel more confident now, and my fear when I talk with people reduces; this information {ah…} made me more confident, so I began to talk with others without fear or guilt….." (PDwS7)
“….. When I read the booklet, I knew it is a common illness and my self-confidence improved, so I am now interacting with others more than the previous time…..” (PDwS1)
The above extracts illustrate the importance of improving the knowledge and understanding of PDwS concerning the illness, so as to eliminate or minimise the perceived stress, fear and guilt that can be associated with the illness, particularly as a result of the cultural stigma attached to mental illness within Jordan. Furthermore, these accounts together suggest that having an adequate knowledge of their illness appeared to improve their self-confidence and social life. The PDwS’ views highlighted the inevitable clash between self-confidence and social networking when a number of participants reported that being diagnosed with schizophrenia appeared to produce low self-confidence and social isolation as a result.
Discussion
The purpose of this study was to explore the acceptability and processes underlying any observed effect of the PEI on the participants’ outcomes. The intervention was perceived as being valuable in enhancing participants’ knowledge and understanding of schizophrenia as well as promoting their well-being. The findings of this process evaluation corroborated the quantitative findings of the RCT, published elsewhere, that indicated statistically significant effects of the intervention [26].
The qualitative data illuminates how the intervention impacted participants’ knowledge and understanding and how they applied this understanding in their lives to their benefit. The limited knowledge levels of schizophrenia among participants prior to receiving the intervention seen in this study correlates well with previous literature [27–29]. These data clearly demonstrate that the limited knowledge of schizophrenia was associated with self-stigma, shameful feelings and a pre-occupation with negative psychological feelings (i.e. depression, low self-esteem), all of which have been linked with lower treatment adherence [30] and a poor quality of life [31]. The qualitative data reflects the impact of improving knowledge and understanding of illness on self-efficacy, self-esteem and empowerment. The findings also accord with those of other studies that emphasise the importance of an improvement in knowledge in enhancing PDwS and their family caregivers self-efficacy [36] and empowerment [32, 33], which may influence health outcomes [34, 37].
Additionally, the majority of participants who were interviewed explained that the information obtained from the intervention helped them to manage their condition, and that it gave them the courage to confront stress and stigma. Furthermore, in this study, empowerment modified the way participants perceived their illness, and encouraged them to take more control over negative events and to handle internalized stigma better, which may in turn have led to their improved wellbeing (i.e. being less stressed, more optimistic etc.). This finding has much support in the literature, which indicates that improving family caregivers’ understanding of the illness might have assisted them in reappraising caregiving demands and better handling of maladaptive behaviour [38].
Moreover, an understanding of the illness enabled them to know who they are, rather than simply internalise and accept societal prejudices about schizophrenia; they felt they were like other individuals who face problems as a part of daily life and used their skills to handle this. These findings are in accordance with those reported in other studies [35, 36]. In addition, the issues of problem-solving and communication skills discussed in the booklet provided practical strategies to handle challenging situations. Indeed, the themes that emerged from the data reflected the notion that knowledge is power; having an understanding of the illness helped PDwS and primary caregivers to discuss the illness and put questions to mental health professionals, as well as to engage actively in their treatment decision-making process. Commenting on this, others [39] argued that an increase in the awareness of family relatives about medication may lead to their improved medical vocabulary and enable them to ask psychiatrists questions concerning their ill relative.
The importance of knowledge improvement for these study participants lies in its influence on their ability to take an active role in their own treatment regimen, rather than merely being a passive recipient. Therefore, it is likely that the knowledge and skills obtained from the intervention provided PDwS and their primary caregivers with an understanding of the nature of the illness and treatment options, which in turn enabled them to be empowered to discuss suitable medication options with the mental health team. For instance, the interviewed primary caregivers indicated they felt sufficiently confident to discuss suitable antipsychotic medication for their ill relative with psychiatrists. Likewise, this view was also echoed in another study, which concluded that mentally ill people who are uninformed about medication and its side effects are at a higher risk for discontinuation of therapy without proper consultation from psychiatrists [40].
In the current study, primary caregivers had different strategies to handle relapse, such as controlling the stressors in the home environment or increasing medication dosages based on their psychiatric consultation. It should be noted that experts in schizophrenia research estimate that the time interval between early signs and relapse is about one week [41]. Therefore, applying a suitable counter-measure during this interval (one week) could prevent relapse with hospitalisation by increasing medication doses until the precipitating factors have been addressed and resolved [42].
With respect to the relapse prevention, the content of the PEI included in a booklet about the early signs of relapse which may have contributed to the reduction in relapse with hospitalisation. This might have allowed participants to take immediate action in case these symptoms reoccurred. Most of the interviewed primary caregivers expressed their improved ability in monitoring the early signs of relapse and taking suitable actions in order to forestall or prevent relapse progression towards hospitalisation. Another study demonstrated the importance of the ill relative’s close observation for an effective monitoring of early warning signs of relapse [43].
As a corollary, it is therefore possible that knowledge gained from the intervention enabled and empowered study participants to identify environmental triggers of relapse, and to implement relapse prevention strategies earlier rather than later or not at all. In addition, better adherence with medication and adjusting doses with psychiatrists may explain relapse results. Similarly, it was noted this finding was corroborated with other study finding [44], which showed that enlisting primary caregivers who had frequent contact with their mentally ill relatives in the PEI enabled them to detect prodromal signs of relapse and helped in managing stressful situations, as well as supporting medication adherence more than other family relatives.
The notable finding from this study is that most of the interviewed PDwS explicitly linked the improved knowledge of schizophrenia gained from the PEI with the perceived improvements in their coping strategies, especially with regard to the debilitating symptoms of schizophrenia (e.g. hallucinations). This helped them cope with these symptoms in their lives, resulting in improved mental conditions. For instance, some interviewed PDwS utilised a cognitive approach to cope with hallucinations. This is supported by [45], which indicated that teaching PDwS to cope with the symptoms of schizophrenia may enable them to relabel them as harmless symptoms of their illness, or to restructure paranoid thought content. The findings of this study are in line with those of [46], which showed that cognitive, behavioural and physiological strategies were commonly cited among Taiwanese PDwS as ways to cope with auditory hallucinations
Model of PEI Impacts on Study Participants’ Outcomes Post-Intervention
The findings of this study have implications for clinical practice. From a policy perspective, the findings indicate that this less intrusive and less demanding and more cost-effective format of delivering intervention is as effective as face-to-face formats making it suitable for use in resource poor environments. Therefore, introducing helping resources for PDwS and primary caregivers support antipsychotic medication.
There are some limitations which could affect the transferability of the findings. Firstly, all interviews were conducted by the researcher who recruited participants into the study and implemented the intervention. This may be considered as both a strength and a limitation. It could be argued that the participants may be unlikely to disclose unfavourable opinions of the intervention to the individual that recruited them into the study. However, a number of participants did speak about aspects of the intervention they did not like and felt could be improved. Participants also reported some negative effects of the knowledge gained from the intervention, suggesting that they were able to speak about their experience openly. An alternative view is that participants felt more relaxed being interviewed by an individual with whom they had developed some rapport, enabling them to be more open in terms of their responses. It could also be considered that the inclusion of follow-up phone calls may represent a confounder in terms of understanding the impact specifically of the PEI and may limit the generalisability of the findings. Secondly; the research team was not able to recruit any male primary caregivers’ for interviews, whilst the quantitative study data suggests that males only represented 18% of the PCs recruited to the RCT, this lack of involvement may limit transferability of the findings.
The data from this study suggest that the implementation of this low-cost PEI into routine services should be possible. In terms of impact on the workload of the mental health professionals in Jordan it is suggested that they should allow PDwS and their PCs adequate time to discuss, understand and explore their experiences about schizophrenia, daily problems, coping with illness and antipsychotic medication. This may have a positive impact on satisfaction and adherence to treatment. These suggestions are supported by a growing body of evidence [50, 51]. It is encouraging that the findings of this study showed that the booklet format of delivering PEI, which has neither been tested in a controlled trial nor reported in the literature, demonstrated a similar effect on the mental condition as other forms of delivering PEIs.
Conclusions
Individual understanding varied between PDwS and PCs reciving PEI and led to differences in the ways that they used knowledge gained from the PEI in everyday situations. These data support the importance of improving understanding of schizophrenia by PDwS and their PCs to enable them to benefit more fully from medication.
Declarations
Acknowledgements
The research team would like to thank Miss Morna O’Connor for her support with the qualitative data analysis, all the PDwS and primary caregivers for their participation in the interviews and the clinic staff who provided a suitable room to conduct interviews.
Funding
This study was funded by Islamic development bank as a doctoral scholarship for AAH.
Availability of data and materials
Data are available and ready upon request. Data are kept with the research team.
Authors’ contributions
The study was designed by AH, PC and JL, who also conducted the analyses with assistance from a qualitative researcher expert. AH, PC and JL contributed to the interpretation of the data, the writing of the paper, and approved the final manuscript. All of the research team (AH, PC and JL) had full access to all data in the study and had final responsibility for the decision to submit for publication.
Authors’ information
AH: Assistant professor, Fakeeh College for Medical Sciences, Jeddah, Kingdome of Saudi Arabia.
PC: Professor, School of Nursing, University of Nottingham.
JSL: Professor, School of Nursing, University of Nottingham.
Competing interests
The authors declare that they have no competing interests.
Consent for publication
Not applicable.
Ethics approval and consent to participate
The ethical approval was obtained from the Medical school in the University of Nottingham and from the Ministry of Health in Jordan. In addition, Consent form was sought from all the study participants.
Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Authors’ Affiliations
References
- Almeida OP, Howard R, Levy R, David AS. Psychotic states arising in late life (late paraphrenia) psychopathology and nosology. Br J Psychiatry. 1995;166(2):205–14.View ArticlePubMedGoogle Scholar
- Olesen J, Gustavsson A, Svensson M, Wittchen HU, Jönsson B. The economic cost of brain disorders in Europe. Eur J Neurol. 2012;19(1):155–62.View ArticlePubMedGoogle Scholar
- Lehman AF, Steinwachs DM. Translating research into practice: the Schizophrenia Patient Outcomes Research Team (PORT) treatment recommendations. Schizophr Bull. 1998;24(1):1–10.View ArticlePubMedGoogle Scholar
- WHO. Mental Health System in Jordan. 2011.Google Scholar
- Schizophrenia [http://www.who.int/mediacentre/factsheets/fs397/en/].
- Begg C, Cho M, Eastwood S, Horton R, Moher D, Olkin I, Pitkin R, Rennie D, Schulz KF, Simel D. Improving the quality of reporting of randomized controlled trials: the CONSORT statement. JAMA. 1996;276(8):637–9.View ArticlePubMedGoogle Scholar
- Mohamed S, Rosenheck R, McEvoy J, Swartz M, Stroup S, Lieberman JA. Cross-sectional and longitudinal relationships between insight and attitudes toward medication and clinical outcomes in chronic schizophrenia. Schizophr Bull. 2009;35(2):336–46.View ArticlePubMedGoogle Scholar
- Xia J, Merinder LB, Belgamwar MR. Psychoeducation for schizophrenia. Cochrane Database Syst Rev. 2011;6.Google Scholar
- Hooley JM. Expressed emotion and relapse of psychopathology. Annu Rev Clin Psychol. 2007;3:329–52.View ArticlePubMedGoogle Scholar
- Bhugra D, McKenzie K. Expressed emotion across cultures. Adv Psychiatr Treat. 2003;9(5):342–8.View ArticleGoogle Scholar
- Giron M, Fernandez-Yanez A, Mana-Alvarenga S, Molina-Habas A, Nolasco A, Gomez-Beneyto M. Efficacy and effectiveness of individual family intervention on social and clinical functioning and family burden in severe schizophrenia: a 2-year randomized controlled study. Psychol Med. 2010;40(1):73–84.View ArticlePubMedGoogle Scholar
- Hasan AA, Callaghan P, Lymn JS. Evaluation of the impact of a psycho-educational intervention for people diagnosed with schizophrenia and their primary caregivers in Jordan: a randomized controlled trial. BMC Psychiatry. 2015;15(1):1–10.View ArticleGoogle Scholar
- Zoladl MS F, et al. Common lived experiences of Iranian families with mental illness. Saudi Ger Hosp Med J. 2007;2(1):443–52.Google Scholar
- Creswell JW. Research design: Qualitative, quantitative, and mixed methods approaches. USA: Sage publications; 2013.Google Scholar
- Avis M. Do we need methodological theory to do qualitative research? Qual Health Res. 2003;13(7):995–1004.View ArticlePubMedGoogle Scholar
- Patton MQ. Qualitative evaluation and research methods. SAGE Publications, inc; 1990.Google Scholar
- Sandelowski M. Sample size in qualitative research. Res Nurs Health. 1995;18(2):179–83.View ArticlePubMedGoogle Scholar
- Braun V, Clarke V. Successful qualitative research: A practical guide for beginners. Sage; 2013.Google Scholar
- Al-Krenawi A, Graham JR, Kandah J. Gendered utilization differences of mental health services in Jordan. Commun Ment Health J. 2000c, 36(5):501–511.Google Scholar
- Oakley A, Strange V, Bonell C, Allen E, Stephenson J, Team RS. Health services research: process evaluation in randomised controlled trials of complex interventions. BMJ: Br Med J. 2006;332(7538):413.View ArticleGoogle Scholar
- Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.View ArticleGoogle Scholar
- Green J, Thorogood N. Qualitative methods for health research. Sage; 2013.Google Scholar
- Denzin NK. The research act: A theoretical introduction to sociological methods. Transaction publishers; 1970.Google Scholar
- Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International J Qual Health Care. 2007;19(6):349–57.View ArticleGoogle Scholar
- McCauley CO, McKenna H, Keeney S, McLaughlin DF. Concept analysis of recovery in mental illness in young adulthood. J Psychiatr Ment Health Nurs. 2015;22(8):579–89.View ArticlePubMedGoogle Scholar
- Hasan AA, Callaghan P, Lymn JS. Evaluation of the impact of a psycho-educational intervention for people diagnosed with schizophrenia and their primary caregivers in Jordan: a randomized controlled trial. BMC Psychiatry. 2015;15(1):72.View ArticlePubMedPubMed CentralGoogle Scholar
- Ran MS, Xiang MZ, Chan CLW, Leff J, Simpson P, Huang MS, Shan YH, Li SG. Effectiveness of psychoeducational intervention for rural Chinese families experiencing schizophrenia - A randomised controlled trial. Soc Psychiatry Psychiatr Epidemiol. 2003;38(2):69–75.View ArticlePubMedGoogle Scholar
- Chan SWC, Yip B, Tso S, Cheng BS, Tam W. Evaluation of a psychoeducation program for Chinese clients with schizophrenia and their family caregivers. Patient Educ Couns. 2009;75(1):67–76.View ArticlePubMedGoogle Scholar
- Merinder LB, Viuff AG, Laugesen HD, Clemmensen K, Misfelt S, Espensen B. Patient and relative education in community psychiatry: a randomized controlled trial regarding its effectiveness. Soc Psychiatry Psychiatr Epidemiol. 1999;34(6):287–94.View ArticlePubMedGoogle Scholar
- Vogel DL, Wade NG, Haake S. Measuring the self-stigma associated with seeking psychological help. J Couns Psychol. 2006;53(3):325.View ArticleGoogle Scholar
- El-Badri S, Mellsop G. Stigma and quality of life as experienced by people with mental illness. Australas Psychiatry. 2007;15(3):195–200.View ArticlePubMedGoogle Scholar
- Kleim B, Vauth R, Adam G, Stieglitz R-D, Hayward P, Corrigan P. Perceived stigma predicts low self-efficacy and poor coping in schizophrenia. J Ment Health. 2008;17(5):482–91.View ArticleGoogle Scholar
- Ritsher JB, Otilingam PG, Grajales M. Internalized stigma of mental illness: psychometric properties of a new measure. Psychiatry Res. 2003;121(1):31–49.View ArticlePubMedGoogle Scholar
- Vauth R, Kleim B, Wirtz M, Corrigan PW. Self-efficacy and empowerment as outcomes of self-stigmatizing and coping in schizophrenia. Psychiatry Res. 2007;150(1):71–80.View ArticlePubMedGoogle Scholar
- Roe D. Progressing from patienthood to personhood across the multidimensional outcomes in schizophrenia and related disorders. J Nerv Ment Dis. 2001;189(10):691–9.View ArticlePubMedGoogle Scholar
- Lysaker PH, Roe D, Yanos PT. Toward understanding the insight paradox: internalized stigma moderates the association between insight and social functioning, hope, and self-esteem among people with schizophrenia spectrum disorders. Schizophr Bull. 2007;33(1):192–9.View ArticlePubMedGoogle Scholar
- Watson AC, Corrigan P, Larson JE, Sells M. Self-stigma in people with mental illness. Schizophr Bull. 2007;33(6):1312–8.View ArticlePubMedPubMed CentralGoogle Scholar
- Glanville DN, Dixon L. Caregiver burden, family treatment approaches and service use in families of patients with schizophrenia. Isr J Psychiatry Relat Sci. 2005;42(1):15–22.PubMedGoogle Scholar
- Solomon et al. The impact of individualized consultation and group workshop family education interventions on ill relative outcomes. J Nerv Ment Dis. 2000;23(2):27–37.Google Scholar
- Degmečić D, Požgain I, Filaković P. Psychoeducation and compliance in the treatment of patients with schizophrenia. Coll Antropol. 2007;31(4):1111–5.PubMedGoogle Scholar
- Herz MI, Lamberti JS, Mintz J, Scott R, O'Dell SP, McCartan L, Nix G. A program for relapse prevention in schizophrenia - A controlled study. Arch Gen Psychiatry. 2000;57(3):277–83.View ArticlePubMedGoogle Scholar
- Carpenter WT, Buchanan RW, Kirkpatrick B, Breier AF. Diazepam treatment of early signs of exacerbation in schizophrenia. 2014.Google Scholar
- Lamberti JS. Seven keys to relapse prevention in schizophrenia. J Psychiatr Pract®. 2001;7(4):253–9.View ArticleGoogle Scholar
- Bond GR, Drake RE, Mueser KT, Latimer E. Assertive community treatment for people with severe mental illness. Dis Manag Health Out. 2001;9(3):141–59.View ArticleGoogle Scholar
- Turkington D, Kingdon D, Turner T. Effectiveness of a brief cognitive—behavioural therapy intervention in the treatment of schizophrenia. Br J Psychiatry. 2002;180(6):523–7.View ArticlePubMedGoogle Scholar
- Tsai Y-F, Ku Y-C. Self-care symptom management strategies for auditory hallucinations among inpatients with schizophrenia at a veterans' hospital in Taiwan. Arch Psychiatr Nurs. 2005;19(4):194–9.View ArticlePubMedGoogle Scholar
- Barrio C, Yamada A-M. Culturally based intervention development: the case of Latino families dealing with schizophrenia. Res Soc Work Pract. 2010;20(5):483–92.View ArticlePubMedPubMed CentralGoogle Scholar
- Cheng LY, Chan S. Psychoeducation program for Chinese family carers of members with schizophrenia. West J Nurs Res. 2005;27(5):583–99.View ArticlePubMedGoogle Scholar
- McWilliams S, Hill S, Mannion N, Kinsella A, O'Callaghan E. Caregiver psychoeducation for schizophrenia: is gender important? Eur Psychiatry. 2007;22(5):323–7.View ArticlePubMedGoogle Scholar
- Huffman MH. Compliance, health outcomes, and partnering in PPS: acknowledging the patient’s agenda. Home Healthc Nurse. 2005;23(1):23–8.PubMedGoogle Scholar
- Rofail D, Heelis R, Gournay K. Results of a thematic analysis to explore the experiences of patients with schizophrenia taking antipsychotic medication. Clin Ther. 2009;31:1488–96.View ArticlePubMedGoogle Scholar