La participación de los pacientes con diabetes en grupos de apoyo online: implicaciones físicas y emocionales e impacto en la comunicación doctor-paciente

IC – Revista Científica de Información y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ https://dx.doi.org/10.12795/IC.2021.I18.16 IMÁGENES, IMAGINARIOS Y NUEVAS NARRATIVAS EN CONTEXTOS DE CRISIS Images, imaginaries and new narratives in crisis contexts La participación de los pacientes con diabetes en grupos de apoyo online: implicaciones físicas y emocionales e impacto en la comunicación doctor-paciente THE PARTICIPATION OF PATIENTS WITH DIABETES IN ONLINE SUPPORT GROUPS: PHYSICAL AND EMOTIONAL IMPLICATIONS, AND IMPACT ON THE DOCTOR-PATIENT COMMUNICATION Noelia Herrero Universitat Pompeu Fabra [email protected] Resumen Los pacientes con diabetes sienten la necesidad de apoyo social, tanto emocional como informativo, que pueden encontrar en redes sociales y grupos de apoyo online. Este artículo adopta un enfoque comunicativo basado en una revisión de la literatura existente para tratar de abordar los problemas que dicha participación puede ocasionar en lo que respecta al bienestar físico y emocional de las personas que padecen diabetes. Palabras clave Redes sociales en línea, apoyo social, grupos de autoayuda, comunicación social, redes sociales 328 Noelia Herrero IC – Revista Científica de Información y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ https://dx.doi.org/10.12795/IC.2021.I18.16 Abstract Patients with diabetes feel the need for social support, both emotional and informational, which can be found in social networks and online support groups. This article takes a communicative approach based on a review of the existing literature to try and address the problems that said participation can cause in regards to the physical and emotional well-being of people suffering from diabetes. Keywords Online social networks, Social support, Self-help groups, Social communication, Social media. Sumario / Summary 1. Introducción / Introduction 2. Marco teórico / Theoretical framework 3. Metodología / Methodology 4. Resultados / Results 4.1. Apoyo social para pacientes con diabetes / Social support for patients with diabetes 4.2. La problemática del consumo de información en grupos de apoyo online / The issues with information consumption in online support groups 5. Discusión / Discussion 6. Conclusiones / Conclusions 1. Introduction Nowadays, people who suffer from a chronic illness (Fox, 2011) increasingly participate in digital communities (Bevan, 2017)- which include online support groups - in order to share their feelings, get emotional support and/or obtain information about their disease. Managing either type of diabetes requires an understanding of the disease, as well as emotional and informational support. In the case of patients with Type 1 Diabetes Mellitus (DM1), as a new source of learning; and for patients with Type 2 Diabetes Mellitus (DM2), as a source of updating or relearning information already acquired. Online support groups are forums where participants feel supported in cases of emotional distress, which increase as a result of the demanding self-care regimens and medical complications of diabetes mellitus. The so-called “stress-buffering model” explains how social support can provide the tools to manage disease self-care and even improve its condition (Ben-Sira, 1985; Peyrot & McMurry, 1992). According to this model, perceived social support weakens the negative perception of the stress suffered due to a chronic pathology and its impact on the patient’s health or quality of life. In the case of DM2, a study by Lee et al. showed the importance of informal health su- 329 La participación de los pacientes con diabetes en grupos de apoyo online: … IC – Revista Científica de Información y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ https://dx.doi.org/10.12795/IC.2021.I18.16 pporters (family, friends) in giving the patient the autonomy to cope with the daily routines involved in disease management (Lee et al., 2018). This article is a theoretical essay that involves a review of the existing literature and aims to address, from a theoretical point of view, the relationship between the information that an individual with diabetes can find in an online support group, the possible consequences of consuming this information, and the role of the health professional within said process of information consumption and disease management. The aim is to clarify the evidence found, since it has proven to be often scarce and contradictory. The proposed approach is based on the theory of social networks and links, and applied to online environments, with the aim of identifying the possible adverse effects of communicating within social networks with the purpose of information consumption and without any type of mediation. Subsequently, conceptual and theoretical tools are provided from a communicative perspective to optimize the possible benefits of doctor-patient communication and interpersonal communication within social networks. 2. Theoretical framework Humans have the need to belong to a community and to choose their networks through self-selection, even though there are other psychological factors that can influence their decisions (Christakis & Fowler, 2009). That is why they organize themselves into communities, which in turn lead to social networks. A social network is a network of interactions between different nodes. The nodes represent the actors and the edges are the relationships between them (Aggarwal, 2011). In online environments, the psychological and sociological forces involved in social networks create interdependence among users and encourage the formation of online herds, mainly due to our evolutionary biology (which awakens our herding instincts) and our interacting brain systems (Baddeley, 2010). Facebook is currently the online social network with the most active users, and it connects more than 3.5 billion people worldwide (Hootsuite, 2019) who are willing to create content, collaborate and share their knowledge. The key factors affecting the dissemination of a message in online social networks are homophily and social influence (Bakshy et al., 2012). Homophily is a psychogenic behavior based on similarity: similarity builds connection. Therefore, individuals tend to associate with people who are similar to themselves (McPherson et al., 2001). On the other hand, we define influence as the power that someone or something has to affect or change someone or something else in an 330 Noelia Herrero IC – Revista Científica de Información y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ https://dx.doi.org/10.12795/IC.2021.I18.16 indirect but important way, with the aim to achieve a greater good for the group, team or organization (Wilson et al., 2016). Because there are multiple factors that can affect an individual, different types of influence are taken into account (Scheer & Stern, 1992); social influence is the phenomenon that occurs when an individual’s behavior is likely to become assimilated into that of his or her social circle over time. The analysis of social influence in social networks is important at both the social and behavioral levels, as it can help to explain people’s behavior and decision-making process (Peng, Wang et al., 2017; Peng, Yang et al., 2017). Patient support groups were first conceived in the 1980s to improve the quality of life of women with metastatic breast cancer through emotional support (Spiegel et al., 1994). These groups required the presence of a medical team (physicians, therapists, nurses), so they were expensive to implement. Today, these types of (offline) groups are not widespread, and are missing in the case of diabetes treatment. Online support groups, however, have been flourishing in recent years, as they combine the concept of a support group with the functionality of an online forum. Online forums are “groups of people with common interests and practices who communicate regularly and over a period of time in an organized manner on the Internet with a common location or mechanism” (Ridings et al., 2002). Online forums are characterized by 24/7 ubiquitous availability, anonymity, selective disclosure, and social networking (White & Dorman, 2001). Online social groups function in a very particular way. Typically, a user’s first experience in discussing or contemplating the community’s knowledge is to respond to or interact with another user’s post (Landqvist, 2016). Therefore, the core activity of these groups revolves around sharing opinions and personal experiences, as well as selecting and distributing information to meet the needs of each author. Discussion threads in online forums can be viewed as a form of group communication, as they have the same characteristics as offline (face-to-face) support groups: namely size, interdependence, task, identity, and norms (Gritsenko, 2016). Some popular online sites such as Facebook or Twitter have become community spaces where people with a chronic disease, such as diabetes, can interact with each other in a similar way as they would in a forum (Zhu et al., 2015). With an average of 1.59 billion daily users (Facebook, 2019), Facebook (FB) is currently one of the most popular sites among the population. FB allows for the quick and easy organization and management of public, private or secret groups. These revolve around any topic that the users, who created them in the first place, may be interested in, including diabetes. In order to join a private group, a user must be invited by a current member of the group (Facebook, 2021). 331 La participación de los pacientes con diabetes en grupos de apoyo online: … IC – Revista Científica de Información y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ https://dx.doi.org/10.12795/IC.2021.I18.16 Research confirms that online forums and FB groups created for the purpose of discussing health-related topics are very similar: they allow participants to share their ideas in a post on which other members are able to respond, as if it were a thread in a forum. In addition, both FB and online forums allow the exchange of private messages between users. In general, FB groups and health-related online forums are thriving and provide support to their users (Nieuwboer et al., 2013). This support can be of different types, specifically in terms of confirmation, information, advice, and empathy (Carlsson et al., 2016). In general, health-related online support groups can be used to fulfill the need for information - which is strongly related with being able to ask specific questions -, or to obtain emotional support - which consists of sharing opinions and providing support to others (Reifegerste et al., 2017; Rains & Keating, 2015; Howard et al., 2001). Therefore, given that people create stronger bonds with individuals who are similar to them (Christakis & Fowler, 2009a), it is assumed, based on the existing literature, that the opinion of a user in an online diabetes support group could have a bearing on the behavior or decision-making process of other users exposed to their message. This would mean that the way one person views a specific problem could alter the way another person does, affecting their emotional and/ or physical well-being. 3. Methodology 3.1. Literature search A search of the electronic databases Google Scholar, MEDLINE and PubMed, was undertaken in November and December 2020, using the search terms ‘‘social support’’ AND ‘‘diabetes’’ in the title and the abstract, AND (‘‘support group’’ OR ‘‘informational support’’ OR ‘‘emotional support’’ OR ‘‘implications’’) in full text. 3.2. Inclusion criteria Our inclusion criterion was articles reporting an approach to the effect of informational and/or emotional support in patients with diabetes. For practical reasons, only articles written in English were retained. No restriction was used concerning the publication date. References from relevant studies were also examined to find additional titles. 332 Noelia Herrero IC – Revista Científica de Información y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ https://dx.doi.org/10.12795/IC.2021.I18.16 3.3. Exclusion criteria The exclusion criteria for this study were: studies involving a population under 18 years of age, studies not addressing support, studies with animals, studies not addressing chronical diseases and studies on sexually transmitted diseases. Studies of protocols that did not present partial results or qualitative results of reported interventions were also excluded. When applying the above search procedure, and after elimination of duplicate articles, a total of 273 articles were identified. 31 articles met the inclusion criteria and were selected for further analysis. Of these, 16 were excluded. Finally, 14 studies were included in the qualitative synthesis. 7 were literature reviews or theoretical articles, and 7 concerned empirical studies. The search process is summarized in the flow chart shown in Fig. 1. Figura 1. PRISMA Flow Chart. 333 La participación de los pacientes con diabetes en grupos de apoyo online: … IC – Revista Científica de Información y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ https://dx.doi.org/10.12795/IC.2021.I18.16 4. Results 57% of the studies (8/14) were published from 2017. All the studies were published in English. This review includes 7 empirical studies (including one randomized controlled clinical trial), and 7 theoretical studies. All patients in the intervention groups of the empirical studies were adults over 18 years. All of them except the ones in the study by Jacks & Thon (2017) reported to have been diagnosed with diabetes. Most of the studies did not specify the type of diabetes of the participants. The number of participants ranged from 22 to 2419 participants. A wide variety of techniques and tools were used including: cross-sectional surveys and questionnaires, online experiments, online applications, pamphlets, peer supporters, integrative group, analysis of laboratory data, positive reinforcement, and focus groups. Due to the differences in their methodology and sample, it is difficult to compare the findings of these studies and further investigations are needed. Table 1 Shows the summary of these studies, their methodology and sample, as well as the main findings related to this study. Table 1. Summary of studies included in the systematic review Author Year Methodology Sample Main findings related to the study Thorne & Paterson 2001 Qualitative approach and comparative methods 22 Canadian adults with T1D Medical support is good because of medical knowledge, but also bad because it can lead to a feeling of control loss over the coindition Gomes et al 2017 Randomized controlled clinical trial 164 patients with T2D and over 40 years old Patients improve when family members are incorporated into the care of the patient Joensen et al 2016 Cross-sectional survey 2419 Danish adults with T1D People with diabetes who establish good social relationships have fewer psychosocial problems 334 Noelia Herrero IC – Revista Científica de Información y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ https://dx.doi.org/10.12795/IC.2021.I18.16 Author Year Methodology Sample Main findings related to the study Fan et al 2006 Questionnaire and laboratory data 1142 American adults with diabetes Social support helps reducing the patient’s psychosocial problems Social and emotional support have a positive impact on the blood glucose levels of patients with diabetes Pimouguet et al 2011 Literature review 41 randomized controlled trials involving adults with type 1 or 2 diabetes Clark 2008 Literature review 11 systematic reviews and appraisals Herrero et al 2019 Cross-sectional survey 307 Spanish adults with any type of diabetes Belonging to these support groups has a positive influence on the perceived social support and motivation of people with diabetes Jucks & Thon 2017 Online experiment 78 German adults The source of information lacks experience but it gains credibility through social validation, with a lack of criticism Weitzman et al 2011 Observational study 11 social networks related to diabetes Most of the information shared lacks medical accountability Lazer et al 2018 Literature review 15 relevant scientific sources and papers Information shared in OSG is not clinically proven Campan et al 2017 Literature review 24 relevant scientific sources and papers Information shared in OSG can be false 335 La participación de los pacientes con diabetes en grupos de apoyo online: … IC – Revista Científica de Información y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ https://dx.doi.org/10.12795/IC.2021.I18.16 Author Year Methodology Sample Main findings related to the study Waszak et al 2018 Social Media analysis 80 of the most frequently shared pages were reviewed (top 10 in each keyword category) Fake news in digital media may pose a potential threat to public health Eysenbach & Jadad 2001 Literature review 45 relevant scientific sources and papers Not all users of digital media are able to understand what they read Herrero et al 2021 Cross-sectional survey 307 Spanish adults with any type of diabetes Participation in online support groups is correlated with poorer health and an increased appearance of complications arising as a consequence of suffering from diabetes 4.1. Social support for patients with diabetes The diagnosis of diabetes involves a series of changes in the patient’s habits: dietary restrictions, daily intake of new medication such as metformin, monitoring of blood glucose levels, insulin injections, and even the possible appearance of complications (nephropathy, retinopathy, cardiovascular problems, obesity or amputations) (Members et al., 2013). All of these changes help to explain the onset of distress (Polonsky et al., 2005), which is also related to poor diabetes self-management regimens (Pintaudi et al., 2015), and has an impact on the increased risk of complications in blood glucose levels, and on the mortality of the affected individual (Grigsby et al., 2002; Anderson et al., 2001; Nicolucci et al., 2013). When this occurs, people with diabetes need social support to feel better. Although social support has different dimensions to it, the most common forms are informational support and emotional support (Roffeei et al., 2015; Loader et al., 2002; Eichhorn, 2008). Informational support refers to the exchange of relevant knowledge and information, whereas emotional support is based on the concern for others. Emotional support can also take place when users post their 342 Noelia Herrero IC – Revista Científica de Información y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ https://dx.doi.org/10.12795/IC.2021.I18.16 The existing literature shows that new technologies can improve the lives of people with diabetes and their relationship with their specialist. However, most studies focus on how to improve the ease of digital communication between patient and doctor (Weiner, 2012), which can only occur if both the patient and the doctor have the knowledge, ability and willingness to use these channels - which are usually used for more bureaucratic affairs, such as requesting an appointment or a prescription (Lo & Parham, 2010). With the advent of online social networks, there has been a shift from the traditional, vertical doctor-patient communication model to a much more horizontal one in which patients are agents in the management of their disease and are empowered by the information and relationships they find online. The relationship between patients, digital media and how a specialist can help them consume the information they find there in an optimal way still requires further research. If we want people, and specifically patients with diabetes, to have access to factual and safe health-related information, we should promote the use of digital media and the participation of medical professionals in the groups in which their patients are active, with the aim of preventing possible negative consequences for them. Conceivably, online forums and support groups should be managed and/or moderated by medical professionals who ensure the well-being of the community by guaranteeing the information shared therein is of greater quality. Furthermore, patients’ communication needs should be taken into account in order to manage the communication strategy and the resources needed to implement it effectively and appropriately for each patient. This requires taking into account the patient’s attitude (including their motivation or need for informational or emotional support), their intellectual level and their difficulty in understanding the information conveyed (backing it up with brochures and guides), the volume of information conveyed and the timing (at the time of diagnosis, 6 months later, etc.), as well as the communication channel needed at each step along the way (direct personal communication, phone services, email follow-up, offline/online support group meetings, etc.). This strategic management of doctor-patient communication should be based on both existing evidence and future research. Future analyses should study whether the education of people with diabetes in regards to the digital environment and the consumption of information should be in the hands of their specialist (endocrinologist, nutritionist, dietician, neurologist...), digital media and communication experts, or at their own risk. 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