Abstract
Internet forums represent a useful but understudied resource to understand psychosocial aspects of living with systemic lupus erythematosus. This study was aimed to describe the demand/supply of social support through the Internet in relation with the description of personal illness experiences. All the posts (118) from an Italian forum for systemic lupus erythematosus patients were collected and analyzed combining qualitative content analysis with statistical textual analysis. The results showed different purposes for posts: starting new relationships, seeking information, receiving emotional support, and giving a contribution. Lexical analysis identified three ways of describing patients’ experiences. Discussion focuses on the relationship between the requested/offered support and systemic lupus erythematosus experiences.
Systemic lupus erythematosus (SLE) is an autoimmune disease most common in women, in which almost every organ may be affected. SLE exhibits considerable variation in disease manifestations between individuals, and the course of SLE generally involves periods of intense flares and periods of remission (Tan et al., 1982). Incidence rates of SLE range from approximately 1 to 10 per 100.000 person-years and prevalence rates generally range from 20 to 70 per 100.000 person-years (Pons-Estel et al., 2010). Nevertheless, psychosocial aspects of living with SLE are still poorly understood (Seawell and Danoff-Burg, 2004).
Patients with SLE must learn to live with a variety of unpredictable symptoms, and they may largely benefit from receiving support and information (including information on the illness, symptoms, consequences, and treatment). A recent literature review showed that the consideration of social support in SLE is critical in predicting patients’ quality of life (both physical and psychological components), although several studies indicate that patients with SLE are dissatisfied with the levels of perceived social support (Mazzoni and Cicognani, 2011).
For many reasons, Internet-mediated communication has become popular in patients suffering of various health conditions, mainly due to the increasing ease of its use accompanied by reduced costs (Mulveen and Hepworth, 2006; Teufel et al., 2011). For example, recent findings showed that Internet represents an important source of information and support for individuals with health conditions like herpes, urinary incontinence, mental health problems, and breast and prostate cancers (Berger et al. (2005), Barnack-Tavlaris et al., 2011; Gallagher and Doherty, 2009; Gooden and Winefield, 2007).
Internet forums currently represent an opportunity for sharing experiences and social support among chronic patients, including also rheumatic diseases like SLE (Gordon et al., 2002; Mendelson, 2003). A forum is an online discussion site where people can hold conversations in the form of posted messages. In many countries, the use of Internet forums is a logical outgrowth of the increasing availability of the Internet. An important motive for participating in such message boards is seeking (and offering) social support (Elwell et al., 2011; Walther and Boyd, 2002). Furthermore, as in other computer-mediated communications, an advantage of Internet forums is the opportunity of overcoming geographic barriers usually encountered in face-to-face communication. Unfortunately, Internet forums for SLE patients (Mendelson, 2003) have received limited attention from health psychologists, if compared with other disorders, for example, cancer (Gooden and Winefield, 2007; Im et al., 2009; Lieberman and Goldstein, 2005; Sullivan, 2003), HIV/AIDS (Mo & Coulson (2010); Rier, 2007), and bipolar disorders (e.g. Vayreda and Antaki, 2009).
Through this exploratory study, we wanted to contribute to fill this gap, analyzing the content of an online forum devoted to SLE. More specifically, the aim of this study was to explore the kinds of support that patients seek and offer through the Internet in relation with their different illness experiences.
Method
All the posts (145) from an important Italian Internet forum for SLE patients were collected. In the homepage, the forum is presented as “a place to meet each other and to exchange opinions.” The authors are requested to express their explicit interest by e-mail to the moderator, for their messages to be published on the web page. The web page is public and everyone has access to the all messages without any registration. Differently to other forums, there is no hierarchical discussion (or tree-like structure) but the posts are authored by different patients and simply appear in a chronological order. In each post, the user–patient usually introduces his or her personal story with the illness, and he or she communicates a message to the potential readers and, finally, leaves an e-mail address to be contacted. 1 The average length of each message was about 300 words (up to 740 words). The posts covered a time span of 12 years (2000–2011), and the authors were from at least 15 different Italian regions.
The e-mail addresses and any other identifying information were removed from the posts, such as the names of cities, regions, hospitals, and doctors. In this way, complete anonymity was ensured, and American Psychological Association (APA) ethical guidelines were thus followed for the reporting of the results (e.g. King, 1996). Eighteen posts authored by family members of SLE patients and nine posts authored by patients who reported a different diagnosis (from SLE) were removed from the corpus. In this way, the final corpus included 118 posts, which corresponded to 118 authors with SLE. In line with the epidemiological data, most of the authors were women (85.6%). According to the patients who reported the time from the diagnosis (85.6%), the average was approximately 6 years and 4 months. The mean age (of the 73.7% of authors who reported it) was 28.7 years old.
Analysis
To reach our goals, we combined a qualitative content analysis, with textual and lexical analyses. As a first step, to identify the kinds of social support, data were analyzed through an iterative process (Crabtree and Miller, 1993). This analysis was conducted by two experts of SLE and social support, specifically trained for qualitative methods. The process started reading each post several times and identifying the main sentences that better explained the explicit aim of the post. Using an inductive process, the first analyst assigned codes to each post and reviewed them several times to ensure accuracy. Codes were then grouped and categorized into themes and subthemes. A second analyst reviewed the coding process, and any divergence was resolved in a meeting between the analysts. In this way, at the end of this first step of content analysis, each post was classified into one of the categories according to the request/offer of support that represented its explicit intent.
As a second step of analysis, in order to explore the reported illness experience associated with requests/offers of support, we applied a lexical analysis on the whole textual corpus of posts using the software T-LAB (version 7.1). This software represents a set of linguistic and statistical tools for content analysis and text mining (Lancia, 2004). 2 During the importation stage, each post was automatically divided into elementary contexts (short paragraphs) of comparable length. The final textual corpus consisted of 285 elementary contexts, still classified according to the type of requested/offered support. The T-LAB tool “thematic analysis of elementary contexts” enabled us to obtain a representation of the corpus content through few significant thematic clusters. 3 Each cluster consists of a set of elementary contexts characterized by the same patterns of words. In this way, clusters are described through the lemmas and the variables (e.g. type of support) most characteristic of the elementary contexts by which they are composed.
Results
Requested and offered social support through content analysis
In the following paragraphs, we present the content of each theme and subtheme identified by content analysis in a discursive way (names of subthemes are indicated in italics).
Starting new relationships
In general terms, all the authors of the posts showed interest in getting in touch with other patients. According to this, a large number of posts were specifically aimed to start new relationships. The authors (45; 11% men and 89% women) reported that they received the diagnosis on average about 6 years and 6 months ago. Some patients wanted to communicate with the aim of sharing opinions, news, information, experiences, views, problems, ideas, hopes, emotions, and even diets. Other messages explicitly expressed the intention of looking for friends, in the more general terms of meeting people, listening, and getting to know each other.
[…] I would like very much to speak with someone who has problems like mine, to confront, to exchange ideas and especially our dreams—and I have many dreams. (Female, 18 years)
Seeking information
The main aim of 26 posts (23% men and 77% women; average time from diagnosis: about 5 years and 1 month) was to receive information from other potential readers, about different topics related with the illness and the patient condition. Questions about the illness had to do both with general information about SLE and with more detailed information about its diagnosis, symptoms, and specific consequences (e.g. on pregnancy) (illness). Questions about treatments specifically referred to drug interactions, new trials, and alternative therapies (treatments). Some patients were looking for information about specialized hospitals and clinics, doctors, and more rarely about other health professionals (e.g. psychologists) (health services). Finally, a small group of patients were interested in knowing more about social assistance, like economic benefits and how to find a job.
I would like to have some information about which are your specialists and where you find specialized clinics. If you write to me I will be happy to answer […]. (Female, 28 years)
Receiving emotional support
Twenty-five posts (8% men and 92% women; average time from diagnosis: about 6 years and 2 months) were mainly aimed to receive emotional support. The starting point is that for some SLE patients, it is difficult to find a real understanding of their condition from other people, and thus, they feel a lack of solidarity. Some patients communicated a precise difficulty in accepting the illness and feeling shocked, angry, and tired, while some patients reported psychological problems they had to face, including depression, panic, traumatic experiences (e.g. negative experience of pregnancy), and self-harm behaviors. Others described their experience with SLE as characterized by a considerable amount of uncertainty, like doubts, confusion, fears, and discouragement (expression of uncertainty). Finally, some patients reported that just telling their story through the forum represented an opportunity for an immediate psychological relief.
[…] In those moments I felt that I was missing someone for sharing my feelings, my fears, my discouragement. My family is closed to me, but it is not the same. Please feel free to contact me if you want to listen to my story and to tell me yours. (Female, 25 years)
Giving a contribution
A group of 22 posts (18% men and 82% women; average time from diagnosis: about 7 years and 2 months) were aimed to offer a possible contribution to other patients with SLE. Indeed, on the basis of their experiences, some authors gave some general tips and advices, like courage, determination, and optimism, as useful attitudes to face the illness. Some patients preferred more direct suggestions, like “be strong,” “do not give up,” “be happy,” “think positive,” “write an autobiography,” and “do not hide the illness.” Other authors offered their help in terms of providing information, experience, and clarifications. These patients thought that writing their positive personal story in the forum could be helpful for someone else, since they prove that even something goes right. Finally, few patients were looking for members of the SLE patients association in order to offer their contribution for organizing events.
[…] I am a bit stronger now, and I would like to be helpful to anyone who is feeling down. I leave my e-mail address. I recently become also member of a patients’ organization for being helpful. (Female, unreported year)
SLE experiences associated with social support through lexical analysis
As a second step of analysis, we integrated content analysis results with a lexical analysis. In details, through a thematic analysis of elementary contexts, we identified three clusters characterized by a specific pattern of words. For each cluster, Table 1 shows a brief list of typical words and the most characteristic type of support. Indeed, the T-LAB tool “thematic analysis of elementary contexts” results into the construction of a contingency table “words × clusters,” and chi-squared test is applied to all the intersections of the contingency table (see also Lancia, 2012).
Clusters, typical lemmas, and associated type of support.
Cluster 1 (shared experiences) includes elementary contexts that describe the SLE experience as something to exchange with others. This is clearly expressed by the willingness to share opinions and to create new contacts. This kind of elementary contexts is more frequent in messages aimed at “starting new relationships.”
Cluster 2 (life and pain) includes elementary contexts that describe the life with SLE as characterized by several difficulties. Starting from the diagnosis, the authors of these statements have gone through pain, searching for acceptable living conditions. In the light of their past “suffering,” it is quite frequent that they want to “give a contribution” to potential readers.
Cluster 3 (cure and communication) includes elementary contexts that emphasized both the cure of Lupus (e.g. in terms of hospitalization) and the importance of communicating with other patients (“small wolves” 4 ). This kind of elementary contexts was slightly more frequent in posts aimed at “seeking information.”
Discussion
Analyzing the content of an online forum devoted to patients, this exploratory study represents a contribution in the understanding of psychosocial aspects of SLE. The aim of the study was to identify the different kinds of support that patients seek and offer through the Internet in relation with the description of personal illness experiences. Through qualitative content analysis, we identified four aims of the posts, which partially overlap with commonly recognized types of social support (e.g. House, 1981).
The aims of these posts also described different orientations toward receiving or giving support and are characterized by an increasing time from the diagnosis. Indeed, if seeking information suggests a more problem-focused orientation and receiving emotional support has to do with emotional ways of coping, both of them imply that the author will be the main beneficiary of a possible interaction. On the other hand, starting new relationships describes a reciprocal knowledge that implies more symmetry in roles. Finally, giving a contribution is manly enacted by the authors of the posts.
Furthermore, the second step of analysis allowed us to describe the messages from a lexical perspective. Results identified three main ways of reporting their stories, emphasizing not only the life experiences of suffering, but also the importance of sharing experiences and of cure and communication among patients. Indeed, just the process of writing can provide a form of expression that enables individuals to present their experiences and to achieve a sense of relief by exposing one’s feelings (e.g. Barak et al., 2008).
The adoption of a different lexicon to describe their experience characterized also the different aims of the posts. The largest group of patients posted messages with the general aim of starting a new relationship, emphasizing the importance of sharing experiences with others. Moreover, it is possible to hypothesize that people who posted with the aim of looking for information (who received the diagnosis more recently) wanted to communicate with other patients specifically in order to identify an adequate cure for their SLE. Patients who posted with the aim of giving a potential contribution reported the difficulties caused by SLE (they received the diagnosis years ago) but found the resources to communicate and provide support to other patients. Finally, we should note that only “receiving emotional support” was not significantly associated with a specific (lexical) cluster. This request for emotional support was reported almost exclusively by women (according to the literature, e.g. Shumaker and Hill, 1991).
The specific features of the forum under analysis allowed us to collect a large sample of comparable posts and experiences. However, each message encouraged the potential reader to recontact the author by e-mail. In this sense, a limit of our study is that we could not consider the answers obtained by authors. Moreover, as a single qualitative study that is based on an Internet sample of patients from the same national context, some caution in generalizing the results to other populations of SLE patients is needed (Elwell et al., 2011; Hamilton and Bowers, 2006).
Our findings support the idea that reported illness experiences are critical in understanding the seeking/offering support strategies. In this sense, our results also suggest a potential link between representations of the illness and the kind of support that patients are looking for. According to this, future research with SLE patients should focus also on the effects of illness representations and requested/provided social support on patients’ well-being over time, with larger and controlled samples of patients (see also Hagger and Orbell, 2003). Further research will also clarify which kind of requested/offered support through the Internet is associated with better outcomes (Mazzoni and Cicognani, 2011).
In the literature about SLE, social support is considered one of the modifiable factors that may interact with others to influence long-term outcomes (Mazzoni and Cicognani, 2011). In general terms, the use of Internet groups can be potentially beneficial in many conditions, like amyotrophic lateral sclerosis, multiple sclerosis, Parkinson’s disease, HIV, fibromyalgia, cancer, and mood disorders (Lieberman and Goldstein, 2005; Wicks et al., 2010). The psychological outcomes, in some cases, also result in improvements in medical decision making and positive behavioral change (Barak et al., 2008). Moreover, Internet forums have a potential for the communication of patients’ uncommon illnesses, since they cover vast geographical areas, and this could be particularly important for patients with SLE who are facing physical and mobility impairments.
However, if the Internet can be an important resource for different types of support, several potential limitations must be recognized (see Barak et al., 2008, for a review). Among them, there is the possibility that answers and information provided by patients may be inappropriate for the potential readers. Indeed, a request for emotional support, which follows serious psychological problems, sometimes overcomes the “positive” answers one could receive from other patients (in the absence of a professional intervention). An adequate supervision of the forum by an expert, who pays attention to the representations, needs and demands from patients should be encouraged.
Footnotes
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.