Background
Methods
Study design
Participants & procedure
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
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
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? |
Data analysis
Rigour
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 |
Results
Sample description
Interview data
Awareness of schizophrenia
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)
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
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)
Empowerment and confidence
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)