This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
The Internet is an important source of health information for people with psychiatric conditions. Little is known about the way patients with schizophrenia use the Internet when it comes to issues related to their illness. Data on their specific needs, difficulties, and the consequences related to Internet use are lacking.
Our objective was to investigate the nature and subjective consequences of health-related Internet use among patients with schizophrenia.
In all, 26 individual semistructured interviews were conducted and analyzed qualitatively in groups of 4 until theoretical saturation was achieved.
Study results suggest that the Internet is an influential source of illness-related information for patients with schizophrenia. Many aspects of their behavior around the Internet resemble those of individuals not afflicted by mental illness. Importantly, problems specific to patients with schizophrenia were stimulus overflow, an inability to deal with the abundance of information, difficulties with concentration, lack of energy, paranoid ideas, symptom provocation, and the need to distance themselves from illness-related topics as part of the recovery process. Internet information was subjectively perceived as having the potential to significantly change patients’ attitudes toward medication and their relationships with doctors.
These findings provide insight into how individuals with schizophrenia handle illness-related Internet information. The data could contribute to the continuous development of Internet-based interventions and offer novel approaches to optimizing traditional treatment options.
Private use of the Internet as a source of information is increasing worldwide. Today, in Austria, 70% of households have access to the Internet, and 67% of the general population regularly uses the Web [
A representative survey of the general population in Great Britain found that 18% of all Internet users access information on mental health issues [
Due to their often-marked interpersonal difficulties, people with schizotypal personality disorder have been found to be especially likely to use the Internet, with a particular interest in social interaction on the Web [
These complex preconditions indicate that Internet use related to issues concerning schizophrenia may be associated with certain difficulties, needs, and consequences specific to patients suffering from this illness. However, currently available knowledge on the effects of Internet use on patients has been largely generated in medical fields other than mental health. Psychiatric research in this area has so far focused mainly on depression and anxiety disorders [
When it comes to severe mental illnesses such as schizophrenia, the impact of the broad availability of illness-related information from the Internet on patients with schizophrenia remains almost entirely unknown. Hence, as a first step, this study aims to uncover the complex and differentiated experiences and insights of people with schizophrenia and the potential subjectively experienced consequences of Internet use on illness-related attitudes, behaviors, and relationships with doctors.
Participants were eligible for inclusion if the following criteria applied: (1) diagnosis of schizophrenia or schizoaffective disorder according to
A semistructured interview style was employed because previous research in other fields suggested a number of areas of interest. Semistructured interviews allowed those areas to be covered while at the same time providing the flexibility to explore emerging themes and individual issues in detail. Accordingly, an interview guide was generated from a literature review, with the initial topics including the extent of Internet use as a means to gain information about the illness; illness-related interaction with others on the Internet; reasons for and against using the Internet for these purposes and consequences thereof; and communication with others about Internet information and its consequences. Questions were open-ended and revised iteratively, allowing for further exploration of new issues raised. For example, the topic of how to personally assess the quality and reliability of Internet information was introduced by participants and actively explored in subsequent interviews.
In the interviews, participants had the opportunity to extensively talk about their views, attitudes, and experiences. Probes according to the interview guide where used when the participants’ narratives came to an end or significantly deviated from the topic of interest. Interviews were conducted at a venue of the participants’ choice, which included a quiet room at the outpatient department, cafés, and people’s homes. Interviews were conducted by a researcher (author BS) who was not involved in the participants’ treatment. Interviews lasted 15 to 60 minutes. All were recorded on audiotape and transcribed verbatim. In addition, data were collected on a number of sociodemographic and illness-related variables.
For content analysis, QRS NVivo 7 software (QRS International Pty Ltd,
Doncaster, Victoria,
Australia) was used [
Repeated comparison and adaptation of the coding among researchers aimed to maximize the credibility of the results; that is, the fit between respondents’ views and the researchers’ reconstruction of the same. Dependability was ensured by a rigorous and traceable research process with all steps of the analysis being fully documented. Transferability is addressed in this report by providing background characteristics of the individual participants, confirmed by the provision of numerous verbatim quotes (see below), all of which contribute to the study’s validity and reliability [
Of the 26 participants whose data were required for theoretical saturation, 14 (54%) were male. The age range of all participants was between 18 and 52 years (mean 33). Sociodemographic characteristics of the participants are displayed in
The majority of participants, (20/26 or 77%) reported their main diagnosis to be schizophrenia, while the remaining 23% (6/26) reported schizoaffective disorder. For all participants, the age at first onset of illness was between 11 and 44 years (mean 22). All but 2 participants had been hospitalized at least once.
Sociodemographic characteristics of the study participants
Characteristic | (n = 26) | % | |
|
|||
Male | 14 | 54 | |
Female | 12 | 46 | |
|
|||
Single | 16 | 62 | |
Partnership/married | 6 | 23 | |
Separated/divorced | 4 | 15 | |
|
|||
Unemployment benefit | 4 | 15 | |
Social welfare benefit | 1 | 4 | |
Student | 3 | 12 | |
Disability pension | 11 | 42 | |
Employed (including sick leave) | 5 | 19 | |
other | 2 | 8 | |
|
|||
Own household (with partner/family) | 9 | 35 | |
Own household (alone) | 9 | 35 | |
Flat share | 2 | 8 | |
Parents’ household | 3 | 12 | |
Supported housing | 3 | 12 | |
|
|||
No formal education | 1 | 4 | |
Compulsory schoolinga | 5 | 19 | |
Primary educationa | 7 | 27 | |
Secondary education (including college and university)b | 13 | 50 |
a Different streams of basic education
b Beginning at age 18 or 19
General Internet use ranged from sporadic to several hours a day. Of all participants, 15 reported use of the Internet on a daily basis, 8 reported regular use, and 3 reported that they used the Internet only rarely. Of the 26 participants, 22 reported having searched for illness-related information on the Web. Of these, 5 regularly used the Internet for illness-related issues, while 17 did so occasionally. In addition, 14 had used chat rooms or networking sites; 5 had exchanged illness-related information there. Favored online sources were common search engines, Internet encyclopedias, and service-related websites.
We found that 7 key themes emerged from the data: (1) specific topics of interest on the Web, (2) reasons for and against using the Internet as a source of illness-related information, (3) subjectively perceived effects of information from the Internet, (4) communication with doctors about Internet content, (5) interaction about the illness on the Internet, (6) reliability and quality of Internet information, and (7) wishes and suggestions for improvement. All themes are outlined below together with some essential quotes. Additional quotes to support the results can be found in
Codes applied, number of people quoting the respective topic, and number of quotations within each category
Key Themes | Number of |
Number of |
||
|
||||
Unspecific illness-related information | 15 | 35 | ||
Medication and side effects | 14 | 43 | ||
Diagnosis/symptomatology | 14 | 18 | ||
Services provided | 13 | 21 | ||
Risk factors and illness causes | 6 | 10 | ||
Prognosis and course of illness | 5 | 6 | ||
|
||||
Reasons for using the Internet for illness-related information | 22 | 69 | ||
Reasons against using the Internet for illness-related information | 26 | 173 | ||
|
||||
Positive effects | 4 | 7 | ||
Clarification and orientation | 8 | 13 | ||
Sharing | 4 | 8 | ||
Reassurance | 6 | 7 | ||
Finding one’s identity | 3 | 4 | ||
Negative effects | 7 | 9 | ||
Symptom provocation or aggravation | 3 | 4 | ||
Aversive emotional responses | 12 | 25 | ||
Effects on behaviors and attitudes | 9 | 16 | ||
Communication with doctors about Internet content | 13 | 31 | ||
|
||||
Interaction about the illness (nonspecific) | 5 | 10 | ||
Reasons for interaction | 4 | 5 | ||
Effects of interaction | 4 | 9 | ||
Reasons against interaction | 17 | 28 | ||
Reliability and quality of Internet information | 23 | 69 | ||
Wishes and suggestions for improvement | 7 | 15 |
Frequently, interviewees reported having looked for general information with some association to their illness, and they often had problems defining the issues they had been interested in more precisely.
Medication was among the most frequently searched issues. Requests dealt with general information, for example, that lithium is a salt or the definition of generic drugs as well as personally relevant information such as side effects. The Internet was used to check whether side effects experienced were attributable to specific medication in the hope of finding better medication with fewer side effects.
If somehow something new is on the market now again, if there is a new class that has no side effects at all...
Participants were conflicted between interest in the topic and the fear of finding out more about potential side effects. Many did not want to know too much about their medication and reported that they preferred relying on their doctors.
And then I am afraid, because I don’t like to take medication that gives me cardiac death or apoplexy or stroke and there is a higher risk for diabetes as well.
Another important interest pertained to diagnostic criteria, symptomatic categories, and statistics, mainly to define one’s own illness and to verify one’s diagnosis.
Interviewees also talked about their Web searches for a variety of services, which they had conducted mainly to help them find a suitable facility or to better evaluate services before deciding to use them. Overall, they felt that such information reduced the barrier to actually accessing psychiatric help.
I mainly wanted to know about the outpatient clinic, like what the opening hours are, when you can be admitted, or when you can speak to a doctor. So in the end, that’s exactly why I actually came here [to the outpatient department], because I found it fairly quickly [on the Internet]…here, it’s not really a problem to speak to a doctor.
When it comes to risk factors and illness causes, some potential psychosocial causes were mentioned (especially stress or predisposing personality factors), but, overall, biological illness models prevailed, especially drugs and assumed genetic and biochemical causes. These biological explanatory factors appeared to provide relief in dealing with the illness. Only a few participants remembered that they had read about prognosis and the likelihood of recovery, and, overall, such information was regarded as rather delicate.
Apart from general advantages such as easy access, speed, and the broad spectrum of information, illness-related motives for using the Internet also became apparent. These included the anonymity and absence of hierarchy on the Web, which we found to be associated with a lower perceived threshold to accessing information and with gaining confidence for overcoming problems with social interaction.
Another advantage is that, that the Internet has a flat shape, that it is accessible to all of society.
Apart from positive incentives for Internet use such as anonymity and egalitarianism, negative incentives could also be identified, including dissatisfaction with therapy, problems communicating with the doctor, and the opportunity to find individually suitable answers.
It’s also a source of information for people that are just starting on antipsychotics and who perhaps don’t get the information they want from their doctor, and it gives you the feeling that you got all the information.
General reasons cited by interviewees against using the Internet to find illness-related information were lack of access to a computer, financial problems, difficulties using technology, fear of computer viruses, fear of Internet addiction, preference for other sources of information, and the expectation of low quality of Internet information. Further important reasons were that the demand for information had already been satisfied, lack of interest, and the wish to rely on a doctor.
I don’t know, I somehow don’t believe that using the Internet can help. I trust my doctor.
The prominent illness-related reasons against Internet use were stimulus overflow and the inability to deal with the abundance of information, problems with concentration, lack of energy and depressive symptoms, paranoid ideas and fear of symptom provocation, and the wish to distance oneself from illness-related topics as part of the recovery process.
…that it is overstressing, that the inconsistencies within the information are strongest on the Internet…when you have too many opinions, you are lost in psychosis.
I try to get over that on my own, and I don’t want all this influence…I want to deal with things the way I want and not be blinded by some Internet report.
And this is also a part of my illness, well, a part of my recovery to distance myself a little from that.
Overall, positive effects may best be summarized as supporting empowerment by getting knowledge and improving access. Specifically, Internet information was considered to help patients better understand themselves and the illness, providing clarification and orientation.
It [illness-related information on the Internet] has simply clarified a lot. And it was important for me to see how other people deal with it [schizophrenia] and how I could perhaps deal with it.
The possibility to anonymously tell one’s own story and to discover that other people reported similar experiences was perceived as a relief. This applied to direct exchange with others, for example, in chat rooms but also applied to the simple finding and reading of illness-related information.
…that I have the feeling not to be alone with the problems I have.
Information in itself had a reassuring effect, reducing fears (eg, of becoming addicted to medication) and helping to better integrate one’s situation and redefine one’s identity.
The positive thing is, about the information, in principle, that you don’t get stuck in this “okay, now I’m nuts,” but that this is a disorder…there are biochemical causes and everything is quite simple in my opinion.
Negative experiences were the provocation or aggravation of symptoms and aversive emotional responses, especially fear, sadness, and hopelessness, for example, in relation to dramatic illness stories.
You can get Internet-induced psychosis from that [searching for illness-related information on the Internet]; you can simply freak out.
A negative effect was that you become scared, there is a lot more, ahem, there are not enough success stories on the Web, I’d say, and you get a lot of negative things.
Internet information was found to have the potential to stimulate changes in behavior or attitudes. These were positive in most cases, for example, better coping strategies or lower thresholds for seeking help.
To better cope with the illness and avoid situations, like drugs, for example, or excessive stress, or that you simply learn to take better care of yourself.
Negative effects on attitudes referred mainly to medication. Specifically, Internet information was described as leading to a more critical attitude toward one’s own medication.
If you read all that, you can’t take the meds anymore anyway, because they have more side effects than they have main effects.
Reasons not to talk to doctors about information from the Web were numerous. Among the most important fears were that doctors could feel criticized or have an unchangeable preconceived view and it wouldn’t be worth discussing things anyway.
Information from the Internet had the potential to significantly change the relationship with the attending doctors, with the most important aspect being a shift of the subjectively perceived hierarchy.
Well, that it is not such a downhill grade anymore, where he [the doctor] has the information about everything and I am there being fed by him and don’t really know why and what I am getting something for and what effects that can have and so on. This downhill grade is something that I have managed to level out, in terms of having power and becoming assertive as a patient.
The way doctors’ reactions were read by patients when talking about Internet information mainly depended on the quality of the patient-doctor relationship. In a good relationship, reactions were mostly judged as positive even when the doctor’s reply was evasive or even openly critical of the Internet search.
Yes, she [the doctor] said there are so-called hypochondriacs who extensively surf the Web and imagine all kinds of illnesses and so on and that I should be careful with this kind of information. Yeah, and then I somehow thought she is right. I really don’t need to read all kinds of rubbish that doesn’t even affect me…
Occasionally patients felt left with uncertainty, doubt, and disappointment, for example, when the conversation did not lead to a satisfactory explanation or desired change. One interviewee recounted having found a new drug on the Internet not yet known to his doctor. While trying to avoid interpreting this incidence in the interview, the frustration it caused was obvious.
Yes, basically I am content with [my doctor], well, except for this one time, when he didn’t know that [the new medication]… if that is their specialist area they have to know about it, otherwise they can’t attend to patients.
In all, 5 interviewees reported exchange of information with other people about the illness on the Web. All stressed the advantage of not being confronted with insecurities in personal contact and appreciated the special content of the information gathered in this way.
People who really have someone in their family who has exactly the same illness, or who have it themselves, I think the things they can tell you are more interesting than when you ask the doctor.
The illness-related interaction on the Web was assessed positively throughout. Overall, 3 major effects were found: self-help or mutual help in coping with the illness, boosting self-esteem and self-validation through helping others, and reassurance through sharing one’s story.
It is also about taking care of each other: How are you? How am I? What advice can I give you when you are unwell? Yes, and through that exchange you learn to deal with your illness and avoid situations that are bad, for example.
Participants who had never used the Internet for illness-related exchange talked about their reasons against it. Relevant obstacles were, again, problems with technology but also illness-related apprehensions, especially fear of becoming addicted, distrust of unknown people, and the necessity to protect oneself against other people’s illness stories.
I think I would be very careful there, because I don’t know if that is a private person who’s logged in there, I mean, I don’t know if you can believe everything people write.
Yes, there are also funny psychoses, but I think they are the minority, and most things people are experiencing are really dramatic, and I want to protect myself against that a little.
Information was described as interesting, rational, good, and credible but also as superficial, trivial, incorrect, of lesser quality, and bad, and even when information was perceived as satisfactory overall, often some skepticism remained about its quality and credibility.
Even though several interviewees had never thought about the reliability of Internet information, most were able to comment on potential strategies to assess its credibility. Often, the judgment was a personal, emotional, or intuitive decision that had to do with a “generally reputable impression” of a given Web page on which nothing should appear “strange” or that should not contain “flashy advertisements.” A further technique was to determine the provider, with more credibility being attributed to “official pages,” such as universities or magazines than to “private pages” or chat rooms.
You have to check the sender; I mean if that is a medical university, for example, or just someone and you don’t know who it is. I think that way you can differentiate very easily what is serious or professional and what isn’t.
Others evaluated the information according to its perceived comprehensibility, usefulness, and transparency. Comparison with one’s own experiences was another strategy, and congruency resulted in trust.
…I have my own lived experience, and I can agree with that or not.
The appraisal by doctors, family, and friends also helped interviewees to form an opinion. Finally, technical features such as cookies, spyware, or the virus scan activation were mentioned as indicators of poor quality.
Attributes of information wished for were that the information should be clear, objective, scientific, and actively destigmatizing. There was a demand for more reflected viewpoints of users and positive case histories, as well as more education about drugs such as cannabis.
…you are most satisfied as a patient when you get really scientific explanations; that helps.
[I would like] more positive case histories because actually you never read, for example, about people who managed to live completely normal lives again.
One of the wishes was for doctors to recommend good Internet sites and talk more about information obtained from the Web. Another suggestion was that doctors should explain on the Internet how they usually communicate with patients and that patients should be able to ask doctors specific questions directly on the Web.
The participants in this study stated that they value the same advantages of the Internet that the general population values, notably, the easy and quick access, the broad spectrum of available information, and the anonymity of Internet use [
Similarly, a number of arguments against Internet use for illness-related information that have been made by the general population were also made by the participants in the study. Among these were problems with technology or expectations of poor quality but also having sufficient information through other sources or preferences for direct personal information from professionals [
While reasons against using the Internet were a prominent topic throughout the interviews and a lot of skepticism was expressed toward Internet contents, the Internet was still described as an influential source of illness-related information. Similar to patients with other diagnoses such as pain, interviewees reported that frequently sought information included diagnosis, medication, and specific services and that forums or chat sites were infrequently visited [
As has been shown in studies involving people with somatic conditions [
Among the specific illness-related reasons for using the Internet elucidated in this study were the anonymity and absence of hierarchy on the Internet, which has similarly been found among healthy individuals [
Knowledge of specific illness-related problems or arguments against using the Internet among this patient group was one of the most significant findings of this study. Problems that were expressed included stimulus overflow and inability to deal with the abundance of information, difficulties with concentration during psychosis, lack of energy, paranoid ideas and fear of symptom provocation, and the necessity to distance oneself from illness-related topics as part of the recovery process. Participants also mentioned the possibility of an overabundance of information. It became evident that patients with schizophrenia may perceive only a certain amount of information as reasonable and feel the need to guard themselves against excess information. Overall, there was some ambivalence regarding the need for information and a struggle to achieve a subjectively adequate distance from illness-related topics and from other people with the same disorder and their stories.
The percentage of participants with secondary education shows that a large proportion of our sample was well educated. Given the diverse sample that was recruited not only from the university hospital but also from community psychiatrists and a low threshold community mental health organization, this may reflect the fact that among people with schizophrenia, those with higher education are more likely to use the Internet, as has also been shown for the general population and people with other disorders [
Some of the participants referred to Internet use that had occurred long ago. This may have been especially true for those who were facing problems with the Internet leading to reduced Internet use. Hence, in these participants a memory bias may have impaired the recall of experiences with the Internet.
The results of our study clearly show that the Internet is an important and influential source of information for patients with schizophrenia. Those who participated in our study wished for more communication with their doctors about information they have retrieved from the Internet. Research in different medical disciplines, however, shows that doctors only rarely integrate the Internet into their daily routine [
Given the potential for change in health care utilization behavior or in attitudes toward treatments and doctors, patients’ Internet use may also have an indirect impact on mental health professionals which health professionals should be aware of in their general practice. Since this qualitative study revealed effects subjectively perceived by participants, the results can serve to generate informed hypotheses, while quantitative and prospective studies in particular are needed to empirically establish the potential effects of illness-related Internet use. Our study may also provide a basis for the development of a questionnaire as a foundation for the quantitative investigation of Internet use and its consequences among patients with schizophrenia.
Moreover, in recent years there has been an increasing tendency to use information technology, including the Internet, for patient education and therapeutic interventions for people with psychotic disorders [
This project was funded by the Medical Scientific Fund of the Mayor of the City of Vienna. The participants’ quotations were translated by a bilingual researcher (author AU) to achieve the most accurate and equivalent meaning in English. We want to particularly thank Mag Alexandra Stockinger for her support with recruiting participants at Promente and all participants who kindly shared their views with us.
None declared
Additional quotes to support the study results
International Classification of Diseases, Tenth Revision