Nurturant Support in Online Health Social Networking

Interaction Patterns of Nurturant Support Exchanged in Online Health Social Networking Katherine Y. Chuang1; Christopher C. Yang2, PhD 1College of Information Science & Technology, Drexel University, Philadelphia, PA, USA Corresponding Author: Katherine Y. Chuang College of Information Science & TechnologyDrexel University3141 Chestnut St.Philadelphia, PA 19104USAPhone: (215) 895-2474Fax: (215) 895-2494Email: katychuang@drexel.edu Abstract Background: Expressing emotion in online support communities is an important aspect to enabling e-patients in connecting with each other, in expanding their social resources, and indirectly increase the amount of support for coping with health issues. Exploring the supportive interaction patterns in online health social networking would help us better understand how technology features impacts user behavior in this context. Objective: We built upon previous research that identified different types of social support in online support communities by delving into patterns of supportive behavior across multiple computer-mediated communication (CMC) formats. Each format combines different ‘architectural elements’, affecting the resulting social spaces. Our research question compares communication among different format of text-based CMC provided on MedHelp.org health social networking environment. Methods: We identified messages with nurturant support (emotional, esteem, network) across three different CMC formats (forums, journals, notes) of an online support community using content analysis. Our sample consists of 493 forum messages, 423 journal messages, and 1180 notes. Results: Nurturant support types occurred frequently among messages offering support (Forum Comments, 67%; Journal Posts, 73.9%; Journal Comments, 82.1%; and Notes 84.9%), but less among messages requesting support. Of all the nurturing supports, emotional (i.e. encouragement) appeared most frequently, with network and esteem support appearing in patterns of varying combinations. Members of this community appeared to adapt some traditional face-to-face forms of support to their needs in becoming sober such as provision of encouragement, understanding, and empathy to one another. Conclusion: We conclude that the CMC format may have the greatest influence on the supportive interactions because of characteristics such as audience reach and access. Other factors include perception of community versus personal space or purpose of communication. These results lead to a need for further research. Keywords: social support, social media, alcoholism Introduction The Internet is a tool that can quickly connect people to each other, forming niche communities that house conversations. Many people go online for communicative or social reasons and also for seeking tailored information [1, 2]. An increased trend of online health information sharing show, where individuals sought help from their social networks by gathering information and finding support as they face important decisions [3, 4]. In 2009, the Pew Internet & American Life Research Center found that e-patients wanted to access user-generated or “just-in-time someone-like-me” health information such as news-groups, blogs, social networking sites or updates [4]. It is very likely that they are looking for people who can show compassion for their situation and offer experiential knowledge. E-patients are Internet users who seek, share, and sometimes create information about health and wellness [4]. They benefit from sharing their experiences, discussing medical information, and exchanging social support. Social support through peer communication can enable e-patients to cope with stress, and also increase access to information [5, 6]. Emotional support, which is one type of social support, can lead to improved health outcomes such as easing adjustment to cancer [7]. Many users join online support groups for a sense of community filled with those who have similar experiences [7, 8]. In fact, some researchers suggest that online communities become surrogate families of e-patients, where members share common problems and help each other toward mutual goals through good times and bad [7, 8]. Online communities exist on websites that use social technologies such as bulletin boards and mailing lists, and social network sites (SNS). SNS are different from previous text-based communication formats in its emphasis on the website representing relationships between users and ‘architectural elements’ that encourage interpersonal relationships [9]. SNS enable users to find each other and build connections using profile pages and a spectrum of private and public communication tools [10, 11]. These social technologies are useful for health services as they enable the creation of web interventions to help heavy drinkers [12-14]. Studying the patterns of nurturing interactions within a support community will give useful insight into users’ information and emotional needs from an online support group. Because web interventions incorporate a variety of behavior change theories as a foundation in its design process [15], studies such as this one reporting social interaction patterns in an online community will reveal spots for improving design of online communities. This in turn can contribute to applications such as online intervention programs. The objective of this research is to identify the types of nurturing social support in an online healthcare social networking site across three different text-based communication tools: discussion forums, personal journals, and notes. This study presents empirical data as evidence that patterns of nurturing support varies among the different online tools. Results are then discussed in conjunction with theories to explain possible causes of support behavior patterns. Prior Work Previous research documented examples where e-patients needed online social support beyond technical support and information from health providers (i.e. doctor visit reminders); however these studies were limited on technical front because they did not distinguish the CMC format as a factor of support group behavior. CMC enables interpersonal communication in a public environment, however users often conduct their conversations on this platform as a private space [9, 16, 17, 18]. This dilemma presents the motivation to compare supportive communication across multiple formats. Online Social Support Support communities are more likely to exist in health domain when patients experience greater levels of unexpected stress or confusion, rather than other contexts such as sports or politics [19]. E-patients often have their information needs coexisting (i.e. unfortunate news, or required behavior change) For example, a liver cancer patient may have learned that the cancer was a result of overdrinking over many years. When shifting to a sober lifestyle, the patient may find general social support from friends helpful in preventing relapse [20]. Of the different social support types available (informational, nurturant, instrumental), nurturant support is a more intimate type of support. It is built upon trust and more frequent interactions [21, 22]. People exchange nurturant support as an expression of caring for someone without necessarily seeing tangible. SNS are online spaces where users can work on creating intimate relationships with each other using the friending and messaging features, thus exchanging social support [10, 23]. Expressing emotion is an important component in the daily management of relationships. Unlike in other online communities, SNS users tend to expect to gratify their social-emotional needs rather than informational needs [22]. For instance positive comments between friends are often observed on general SNS websites such as MySpace [23]. It has also been observed that close friends are sources of emotional support that can help with coping in difficult times or to improve mental health [24, 25, 26]. People with strong ties often communicate thru many channels [24, 27] but also with more emotional content. We suspect that the different communication formats can reveal a spectrum of nurturant support types. Several positive outcomes of participation in self-help groups were documented in related research literature, including (a) sharing information such as ideas, facts, and resources; (b) engaging in dialogue to reveal multiple perspectives; (c) discussing taboo subjects; (d) being quot;
all in the same boatquot;
with others; (e) experiencing mutual support; (f) engaging in problem solving and rehearsing; (g) overcoming alienation and isolation; (h) engaging in catharsis; (i) taking on the role of helper; (j) developing inspiration and hope; (k) developing social networks; and (1) assisting more people less expensively [28, 19, 29, 8]. Support community members share personal experiences, which may also include personal information. Emotional support is a valuable element of social support and helping support seekers to cope with health problems [28, 19, 29]. In addition, peer communication such as establishing social norms or finding role models and sharing feelings can also play a role in facilitating new health habits, such as quitting smoking [30]. Because of the nature and helpfulness of emotional support we explored the nurturing types (esteem, network, and emotional) across the various CMC formats. Medical environment of sharing nurturant support While similar studies over the past decade (Table 1) also identified the content within online support communities across a number of health conditions, they did not focus on impact of technology. For instance, they compared types of social support exchanged across email lists and discussion groups (P99, B99, B07, M07), as well as bulletin boards (P07, C08, E08, C09, M10, S10). These earlier forms of social technologies are previous forms of current social networking technology, and all come with different features. CodeYearAuthorDataP991999Preece Torn Knee Ligament, 500 msgs, April 1996 – April 1997B991999Braithwaite et al“Support Network” for disabilities, 42 users, 1472 messagesB072007BambinaSupport OnLine Cancer Forum, 84 members.1149 messagesM072007Meier et alAssociation of Cancer Online ResourcesP072007Pfiel & ZaphirisDepression/Seniors, discussion forumC082008Cunningham et alAlcoholism, 10 months, 474 Posts (moderated)E082008Eichhorn5 Eating Disorder msg boards, 490 messagesC092009Coursaris & LiuHIV/Aids, 5000 messagesM102010McCormack Eating DisorderS102010Selby et alStopSmokingCenter.net (moderated) (11/6/04 – 5/15/07) Table SEQ Table ARABIC 1. Previous Studies In previous studies of online support communities, researchers also identified various types of support available from online support communities [21, 28, 31, 32, 33, 6, 34, 19]. They compared online support with face-to-face empathy [34], compared with other types of communities [19], and the benefits from participation [35,8]. However, these studies report findings of only one communication format instead of looking at the relationship between the use of the tool and the tool itself. We are interested in a more in-depth study of social software features that impact social interaction patterns. Some of these studies focused on evaluating support communities [31,36], while many of the other studies aimed to describe the content of the support communities [21,28,34,19], Some studies also investigated the types of social support exchanged using [37]’s social support framework [32,33]. Evaluation could be useful in understanding users’ needs out of the website. Computer-mediated Communication through Social Network Sites Social support exchanges can be viewed from an architectural perspective, where the site design affects user behavior [38, 39, 9]. Site design can suggest acceptable behaviors to promote “the development of particular culture or behaviors and identity presentation”, however users will customize them to improve their social interactions [38, 9]. This might be a cause for concern because electronic media lacks clear boundaries between traditionally public and private spaces [39, 9]. In the physical world, the walls of offices and houses clearly separate distinct situations and gates section off personal property. However, connecting to the Internet in many contexts, even in a traditionally private space such as a bedroom blurs public and private information in the online space [9]. In SNS, users must balance their private and public selves, especially when conducting social interactions with each other. For example, Facebook is similar to a glasshouse, with its publicly open structure and many communication tools where members use to leave social cues for each other [9]. Public comments and other communication can signal the “strength and context of a relationship” [38]. SNS encourages “disparate individuals” to connect, communicate, and take action, which fosters interaction that is primarily interpersonal [40, 9]. SNS provide the capability for users to represent themselves with an online presence (identity information) that contains shareable personal info, such as birthday, preferences, photographs, writings, etc. and can assist in developing common ground and facilitate initial interactions [11,40]. Convenient features allow users to form and maintain online network “friends”, where if one user invites another user with a friend request and if accepted, a relationship is established on the website [10]. Friends can communicate through SNS in several ways, including private and public messaging systems [10,40,9,23,26]. Studying these interaction (i.e. length, frequency, and content of these comments) rather than explicit articulations on profile pages can reveal the conversational profile of each relationship [38,9]. SNS interactions are founded upon norms of everyday face-to-face interaction, but when adapted to the online setting, the distinction between public and private spheres is blurred [17]. The space experience comes from relations with others [41, 42]. In neutral spaces such as urban spaces that offer public gatherings, a group’s main activity is informal conversation. Public spaces such as parks are communal and have certain purposes of use compared to a private space such as a home. Communication tools are designed with a spectrum of privacy options. Different CMC formats may give users different perspectives of public and private spheres, and therefore lead to different social supports offered and sought. For instance, users might questions with factual answers in a forum where all other users will easily noticed and accessed for a better chance to receive a quick answer from a broad audience. On the other hand, users who seek encouragement may prefer using personal journal to limit support requests to a smaller group of closely related users. MedHelp Support Communities MedHelp is a health-oriented social networking service where individuals can connect with other people (patients, caregivers, doctors, etc) and information resources. Its platform provides an environment for registered users to join peer support communities as members, and to communicate using several tools, such as discussion forums, journals, and notes. The forum for each peer support community is unmoderated, in the sense that any MedHelp user is able to post questions to the community or respond with comments without undergoing an approval process. However, a self-monitoring mechanism is available to filter malicious messages. The journals format allows users to record thoughts and feelings. Notes are a way for users to keep in touch with each other through their profile pages on MedHelp. ,[object Object]

The support community page lists the most recently updated forum threads in the main section, and recent activity on the sidebar, which also lists recent updates or journal comments (Figure 1). There is also a sidebar box that lists community members and links to their profile pages. Each personal profile page displays sections of the user’s activity across communication tools. Privacy settings on an individual user’s profile page can affect who can read updates and write notes. If the setting for journal and notes are set to ‘only my friends’ then only users who are ‘friended’ may view these content. If setting is set to ‘only me, only the user can see their own content when logged in. The content in each of these tools is organized chronologically.

CMCAuthoring new postsCommentingAccess & NotificationsPrivacy Settings Other featuresForumAny userAny userPublic Forum PagePublic Add Tags, Select topic, Add to watch list, Show TickerJournalOwner of journalFriends (depends on settings)Profile PageEveryone, Only my friends, Only MeAdd Tags, Show Ticker, Add PhotoNotesFriendsNoProfile PageEveryone, Only my friends, Only MeAdd as friendTable SEQ Table ARABIC 2. Comparison of CMC Architectural Elements Figure SEQ Figure ARABIC 1. Messages and Updates displayed on public forum page Figure SEQ Figure ARABIC 2. Friends and messages displayed on user’s profile page How users message each other in MedHelp The three communication tools we investigate in this study (forum, journals, and notes) are available for any MedHelp support community member to post content. Each tool varies in features for posting content (Figures 3-5). Users can post questions or polls to the forum, record thoughts in journals, and contact other users with notes. To post a question in the forum, users are required to fill out a title, select a topic, describe their question, and optionally add tags (Figure 3). When posting to the forum it is fairly clear that the intention is for user to communicate with the entire support community. Posting to a journal can include title, entry, tags, photos, with selected privacy options (Figure 4) and will only be listed on a user’s profile page. The intention of posting to the journal for MedHelp users is to record their thoughts and feelings. Only the owner of the personal profile page can intiate a thread by making a journal post but other authorized users are able to comment on a journal post. Posting notes on a user personal profile page includes type of note and the content in the note (Figure 5). Any member who is allowed to read the notes entries is allowed to post. Users can leave notes on other members’ pages if they are allowed to read it. If the user is not a friend, there is an option to befriend the user. However, the owner of the personal profile page is not allowed to post to his or her own notes section. The journal and notes features are similar to Facebook and Myspace wall posts, which allow users to communicate one on one. However, MedHelp is more specific on who can initiate, comment, and post in journal and notes sections. The screen shots are shown below. Figure SEQ Figure ARABIC 3. Posting Forum QuestionFigure SEQ Figure ARABIC 4. Posting Journal PostFigure 5. Posting Note In this study, we explore the range of nurturing behaviors displayed across CMC of an online health supportive community by identifying themes in user created content. We speculate that patterns of nurturant support exchanged across different social media communication formats may vary depending on architectural elements of the communication tools. In this study we try to answer: What are the different levels of nurturant support across different communication formats? Why are they different? Results from this study would be useful for improving design of technologies supporting online communities, because increasing socialization of online health information will open up opportunities for future online health services [4]. By answer these research questions, we hope to better understand the link between site design and group interactions in an online health community. Methods Our approach consists of data collection with a web crawler, and manual content analysis. Although the typology of social support used in this study was originally developed for short conversations between spouses instead of support group, it has shown enough generalizability for use in support groups [28,32,37,33]. All five of the supracategories from [37]’s typology were coded in our data. Instrumental support, such as tangible assistance of offering the recipient a loan and offering to perform an indirect task were not found. Data Collection & Preparation We downloaded three months of data from MedHelp Alcoholism Community (www.medhelp.com) using a web crawler. Data include three types of messages created by users belonging to the community: discussion forums, user journals, and notes on users’ profile pages. The messages in each sample were converted to spreadsheets for identifying themes during content analysis. Content Analysis We used descriptive content analysis to find patterns of social support among messages in the MedHelp Alcoholism community interactions. Our unit of analysis was at the message level. We developed definitions of social support types by reviewing examples from related literature and matched with themes within the data [21,37,43,44]. Concepts and their definitions were drawn out and organized into the three categories (information, nurturant, instrumental). Only two types of support were found in the data – informational support and nurturant support. The third type, instrumental support, is typically found in face-to-face support interactions and was not found in our data. Support Types – Informational vs Nurturant Support Social support is the provision of psychological and tangible resources intended to benefit an individual’s ability to cope with stress, such as information or statements leading the subject to believe he is cared. We discuss the types of social support messages used in computer-mediated support groups, organized within [37]’s guideline for categories of information support and nurturant support. There two main types of support: (1) action facilitation, which is intended to assist stressed individual to solve or eliminate problems causing distress, and (2) nurturant support, which caters to the emotional side by comforting support seekers [37,36]. Action facilitation support includes both informational support and instrumental support. Informational support could be facts, advice, information referral, personal stories or opinion. Instrumental supports are tangible services, either direct or indirect for improving the situation (i.e., driving a friend to the hospital). In this study we focused on the second type of support occurring in different CMC formats of an online health support community. We looked for patterns of nurturing interactions across each to identify differences in behavior across the group. Nurturant support includes esteem support, network support, and emotional support, which are defined in more detail in the next section. Coding Scheme – Informational Support Types Information support in messages convey instructions, including (a) advice or teaching, (b) referrals to other sources of information, (c) situation appraisal, (d) stories of personal experience, and (e) opinions. Messages coded as information support often appeared as an attempt to reduce uncertainty for the message recipient [28,37,33]. These informational support types were identified in the three samples. Coding Scheme – Nurturant Support Types Nurturant support posts provide expressions of caring or concern [30,45,46,32,37,33]. These are summarized in below ( REF _Ref155926564 Note: The study marked with * uses the label ‘emotional support’ for validation support. The codes are referring to the studies listed in Table 1. Table 3). Nurturant support is a more compassionate type of support whose purpose is to help recipient with coping or relieving stress. It has been studied in a variety of patient communities, listed in the table below. Support TypeStudies & SettingsDisabilityEating DisorderHIV/AidsAddictionACLDepressionCancerEsteemB99E08, M10C09C08M07ComplimentB99C09S10 ValidationB99C09P07B07*Relief of BlameB99C09NetworkB99E08, M10C09C08P07AccessB99C09PresenceB99C09CompanionsB99C09B07EmotionalB99E08, M10C09P07M07RelationshipB99C09Physical affectionB99C09ConfidentialityB99C09SympathyB99C09B07ListeningB99C09Understanding/ EmpathyB99C09C08, S10P99B07, M07EncouragementB99C09P99P07B07, M07PrayersB99M10C09P07M07 Note: The study marked with * uses the label ‘emotional support’ for validation support. The codes are referring to the studies listed in Table 1. Table SEQ Table ARABIC 3. Comparison of Nurturant Support Types Definitions of Nurturant Support Types Esteem support are positive comments validating a recipient's self-concept, alleviate feelings of guilt as a person and includes compliments, validation, and relief from blame [37]. An example of esteem support in forum is “Congratulations on your sobriety!” Compliments convey positive assessment toward someone or emphasize the recipient’s skills and abilities. In response to a journal entry, one respondent wrote: “Thanks x. This is a great journal entry. Thanks for the laughs. I really needed it. My favorite one is #16. …” or “Good Job! I'm sooooo proud of you =0) :o) =)” Validation or need recognition expresses agreement with the recipient’s perspective on the situation. For example, in response to a journal entry, one respondent wrote: “Stubby, no need to apologize its a great post especially when it comes from your heart <3 …” Relief of blame tries to alleviate the recipient’s feelings of guilt about the situation. The last type of esteem support, relief of blame, was the apparent objective of messages such as, quot;
Its not your faultquot;
or quot;
Don't blame yourself '. Network support focuses on messages to broaden support seekers social network so they don’t feel alone, by connecting them to others with similar situations, including access, presence, and companions [37]. This category refers to attempts for creating structural connections. Emotional connections are classified under emotional support. Referrals to experts (i.e. doctors) were coded as informational support. Access messages invite new members to join conversations or offered to connect members with others having similar interests. One Member offered after describing previous experiences with alcohol, “... Well, I guess I wasn't much help, but I appreciate the input, and it's good to know you're not alone. Thank you brocknbck. Maybe we can help each other.” Presence offers to spend time with the person, to be there in time of need. Some comments emphasized the presence of listeners and encouraged continued use of the forum: “well my dear … please stay in touch with us here...we do care what happens to u!:)”. Companions category reminds the person of availability of companions, of others who are similar in interests or experience. For example, in the forum, one response was: “Just reach out and I will be there ok?” Emotional support composes of expressions that cater to support recipient’s feelings or reciprocates emotion. The emphasis of this category is on supporting emotional states rather than the recipient’s identity or self-concept and the seven types coded were: (a) relationship, (b) physical affection, (c) confidentiality, (d) sympathy, (e) understanding, (f) encouragement, and (g) prayer [46, 37]. Examples of this type includes “You're going through a rough time....” or “Hang in there hon.[sic]” Relationship stresses the importance of closeness and love in relationships the recipient has with others. For example, one individual wrote after returning from a break: “I have missed this forum SO much! Finally back from crazy land and look forward to seeing all those familiar names comment on the questions. … ” Physical affection offers physical contact, including hugs, kisses, hand-holding, shoulder patting. Obviously, physical affection could not be given online; however, it was often offered and conveyed verbally. One member wrote as a response in the forum, quot;
You deserve a big bear hug!quot;
Confidentiality promises to keep the recipient’s problem in confidence. In regards to an online group, confidentiality is typically symbolic [28]. Sympathy expresses sorrow or regret. Listening refers to attentive comments as the recipient speaks. Members also offered one another messages of sympathy, such as quot;
Sorry it had to happen to you.quot;
Understanding and empathy expresses understanding of the situation or discloses a personal situation that communicates similarity of one person’s experiences with another’s. Prayer is spiritual words, mentions of praying, spiritual healing or God. Sometimes support exchanges included multiple types of emotional support. For example, one member responded to another with a mixture of empathy and prayer, “I'm a fellow arthritis sufferer (Lupus) and understand. You might want to visit the web site www.butyoudontlooksick.com. It is for people with disabilities that aren't seen by others. It is so hard when people tell us we don't look sick. I would encourage you to try massage therapy or acupuncture for your pain. I hope you can find some relief and I will keep you in my prayers.” Encouragement messages provided statements of hope or confidence. In one message, a sender said, “Hang in there!” Results The three samples of data consist of user created messages from the discussion forums (n=493), the user journals (n=423), and from notes (n=1180). Based on the displayed structure, forum and journal messages were grouped into posts (i.e. messages that start the thread) and comments to the post. The data sets encompassed 81 forum posts (FP); 412 forum comments (FC), 88 journal posts (JP), and 335 journal comments (JC). SampleForumsJournalsNotesSize493 messages423 messages1180 messagesPostsFP = 81JP = 88CommentsFC = 412JC = 335 Table SEQ Table ARABIC 5. Summary of samples There was a range of message characteristics. A message contains on average 2.57 codes with a maximum of 10 codes per message, except among 1st post of each thread, which had maximum of 6 codes. Some messages only offer support (i.e., “Have you tried Naltrexone? It is suposed to help with the cravings there are other meds that can help with it too. If all else fails, make a picture of tea and pop some popcorn and hang out with him with your quot;
drink”), or only request support (i.e., “Hi, is there a medicine to take to stop the craving for alcoholic drink?”). We first identified informational and nurturant support in the samples (both provided and requested) and present these findings first before presenting specific nurturant support types. Information vs. Nurturant Support The contrast between informational and nurturant support was apparent among the CMC formats. Discussion forums were more informational than the other two (journals and notes). More nurturant support was offered in notes and journal comments, whereas more information support was offered in the forum. However, when requesting social support, users were not as likely to seek nurturant support. The only exception is in journal posts (JP), where the author was more likely to seek nurturant support. Data from the three CMC formats were plotted onto an XY scale, where X = nurturant support and Y = informational support. The (%) indicates percentage of messages in a particular sample with the support type. Notations include: offered support; requested support - i.e. oFP = % of FP messages that offered support, where (FP) Forum Post; (FC) Forum Comment; (JC) Journal Post; (JC) Journal Comment; and (N) Notes. Three main clusters showed up:  Group 1 - formats where many messages offer informational support (i.e. advice) [Forum Posts, Forum comments, and Journal Posts]  Group 2 - formats that where many messages offer nurturant support (i.e. encouragement) [Journal Posts, Forum Comments, Notes, Journal comments]  Group 3 - requested information and nurturant supports are relatively low compared to offered supports. Figure SEQ Figure ARABIC 6. Informational and Nurturant Support levels Based on this initial analysis of informational and nurturant supports, we can see some initial patterns of behavior where information support increases with nurturant support. In addition, the increase of nurturant support also means information support drops off. This imbalance prompted more careful analysis into the specific types of nurturant support for each format, but also across multiple formats. For example, there was link between rJP (36.5% nurturant) and oJC (82.1% nurturant). There was an interesting connection in reverse for notes, where users request information but provide more emotional support. While forums may be seen as Q&A portal for exchanging information, the portion of nurturant support higher than expected in the comments. Nurturant Support Offered The table below summarizes the number of messages that indicate nurturant support offered by subtype. After these numbers were tabulated, they were converted into percentages. ForumsJournalsNotesFPFCJPJCNEsteem15313124220Network518217488Emotional1225961241752Total18330763821460 Table SEQ Table ARABIC 6. Number of messages offering nurturant support Emotional was the most commonly appearing subtype among offered nurturant support. Network and esteem occurred less in comparison. In two sets (JC, FC), esteem support is greater than network, which may indicate the compassionate nature of users who recognized perspective of first author, compliments or relieving blame. In addition, JP also displayed more esteem than network, which may indicate author’s awareness of their audience. Conversely, in the samples that have more network than esteem (notes, FP), the strategy might have been increasing communication with emphasis on presence, access, or companionship. Figure SEQ Figure ARABIC 7. Nurturant Support Offered Two nurturant support patterns emerged in messages that offered support: EM>NET>EST (FP, N) and EM>EST>NET (FC, JP, JC). In the first pattern where network is greater than esteem support (FP, N), it might be an indication of the author’s informational or emotional state while starting a thread in the forum or creating note for friend. The emphasis on network more than esteem suggests promoting presence and involvement with the community, which could be a strategic expression for being worthy recipients of social support. The lower amount of esteem support might suggest social status as less important than membership. The similarity between FP and N may suggest that users post without expectation of a direct response. In one forum post a member offered network support to others in community without expecting a reply, “Ill be here all night if anyone needs to talk.” Another forum post also offers recognition of network support without expecting a response, “Just wanted to thank everyone who has helped me understand. Everyone here is so supportive of each other. Thank you all” The offered network support in notes often was more personal, “You're in my thoughts all the time, but especially today. hoping your ok.” One possibility for pattern differences could be that levels of network or esteem supports are correlated with relationship strength. In the second pattern where the communication formats had the pattern of more esteem than network support EM>EST>NET (FC, JP, JC), this may suggest that these formats are more suitable for praising and complimenting others. FC contained less explicit network support, which might suggest that the act of replying shows presence. Similar to JP and JC, the act of posting may be as an indicator of network support. One JC offers praise and relieves sense of guilt by disclosing an understanding of the situation: “Congratulations! I've watched my husband unsuccessfully fight a nicotine addiction (cigs, cigars, gum, patch or chewing tobacco) and know how hard it is to do this. You are brave and strong and will make this happen. So glad you are taking the steps to ensure we all have your friendship for many long years.” It is possible that users were compelled to offer esteem support when they are more familiar with someone or their situation. FC messages sometimes presented insecurities and successes of members, “… i so agree!i am always dealing with the constant chatter stream in my head.....and when it gets too out there and self defeating i counteract it with many rational alternatives i have learned thru the years!” Another user reveals, “… What a idiot I am to keep staying in an abusive situation. Change is hard. When I was on my own, I kept in touch with my husband so much during that time, and I couldn't find a support group that I clicked with. Now I can see what I do wrong. This is the hardest thing I've ever had to go through, but I need to leave again, and I wish I could just die instead. I'm afraid.” FC and JC messages often have a theme of “me too” and “this is my story” as a way of giving esteem support. JP offers support in a slightly different manner, by making more of a progress report, ”Yippee!! I am very happy to say tonight I get to sit with my family to celebrate my one yr of recovery. My whole support gr, people who have inspired me without knowing and new comers to see that a program of recovery can work one day at a time. Today I can honestly say that I am happy, joyous and free. Through working the 12 steps of AA and Na I HAVE found a new freedom and happiness. Just for today I have a peace of mind, friends,values and most of all the desire to use has been lifted from me. I wish all of you in the world of med help,the same peace of mind, and joy that I experience today.Blessings to you and your family and to all the suffering addicts still out there.” In the second pattern, offering emotional and esteem support more than network, might from an assumption that other members are aware of network support and not need explicit statement. Surprisingly, offered support in journals is different from notes even though their features make them ‘publicly private’. While journals and notes users who communicate with each other might be friends of each other, the longer message format of journals may not be as conducive as notes for maintaining relationships. Nurturant Support Requested There were fewer messages identified with requested nurturant support than offered nurturant support. We calculated the percentage by dividing by total number of messages with that contain nurturant support. ForumsJournalsNotesFP FC JP JC N Esteem 682182Network 810006Emotional 29102379Total4328441517 Table SEQ Table ARABIC 7. Number of messages requesting nurturant support Again for requested nurturant support, emotional support was highest in all sets. Esteem support was also frequently requested among all sets of messages, but most noticeable in JC, which may indicate a desire on part of the commenter to help the journal author feel better about them. Journal messages do not show network support, possibly because readers are already known friends. In comparison to other formats, there are quite high network support requested in notes and forums. Figure SEQ Figure ARABIC 8. Requested Nurturant Support The three patterns that emerged among messages that requested nurturant support were: EM>NET>EST (FP, N); EM=NET>EST (FC); and EM&EST (JP, JC). In the first pattern (FP, N), the combination of requested supports are an effect of authors explicitly stating the type of support they seek, such as an emotional release from thinking about the situation. N had more messages requesting network than FP, which might be an emphasis of referring to the friendship between the author and receiver. In the forums, more comment messages offered network support than post messages, which could be an indication that people comment on forum threads because they know there is someone else with similar situation to talk about. The pattern of requested support in notes is most similar to forum posts, where network requested more often than esteem, possibly because of emphasizing their presence in the online community. An example of a notes message where emotional and network support was requested sought for a specific story, but also provided some details that demonstrate previous conversations: “I'm wondering if you could share your story with me on how you got pregnant this time around. I seem to recall that it was almost back-to-back with a miscarriage. I'm hoping for some inspiration.THANKS, Monica”. Another note offered support prior to presenting information need, also demonstrating details from a previous conversation: “Hi there! Hope things are going well...sorry to read about the spotting, again! I'm very happy that you aren't too upset about it..I'm really hoping that a good appt tmw with the OB will bring me the same peace that you have. I am getting nervous (again)! Quick question, I think I saw that you ordered a doppler...can I ask from where and how much? I'm considering it, but need some info ;) Thanks! Big Hugs!!” Another example of a forum post with this first pattern is from someone who gives a status report about successfully quitting drinking, but also apologizes for not spending enough time at the community: “Hi all, sorry for the absence, just got through with another graduation from the rehab i volunteer at, and have been busy these past few weeks. If anyone is trying to stop or needs help, or if someone is thinking of having a drink, feel free to post. I will give you my cell # and would be happy to talk private as well. Ill be here all night , stand guard to help someone save their life. god bless” In the second pattern, emotional support occurred in the same number of messages as esteem (FC), a demonstration of authors showing empathy and appreciation. For example, a user comments on a forum thread by complimenting another user: “Greyt advice rod!keep it coming...we need u here!” This shows that members find talking to each other soothing. Another user comments in a similar manner: “Thank you so much for your comments and encouragement. I'm trying to keep it together, but ….” While there was less emotion in FC than FP, more esteem and network supports were requested. Perhaps it was easier for members to ask for additional types of support after asking emotional support at least once before. The third pattern of requested nurturant support was observed in JP and JC where users are more likely to only request emotional and esteem, rather than network. Because users who write to each other in the journals have a higher likelihood of being “friends” or have a stronger relationship than forum users, they may find it unnecessary to emphasize reminders of network presence, as that might be a purpose more suited for notes. In the case of no network support in a pattern, the architectural features of the tool offer a way out of explicitly stating network support in note content through the “friends” feature shown on the profile page. In journals, the author intends to write for self or friends and usually only friends notice new posts and willing to comment after reading. For example journal comments sometimes contain nicknames and agreement: “Isnt that the best feeling ever? congratulations mommy, you are so blessed!” Discussion This study identified nurturing social support types across three different text-based communication tools (discussion forums, personal journals, and notes) of an online healthcare social networking site. The content analysis codes developed from literature were organized into [37]’s supracategories, and show similarity to reports from other studies [32,33]. The results provide indication of social support present in the MedHelp Alcoholism community most often exchanged by group members from a three-month period. We find that some formats were more conducive to emotional connecting than others, but overall these tools were used for different purposes. This study presented empirical data of patterns varying nurturing support among the different online tools. This information could be potentially useful to social support scholars and designers of online support groups. In this section, we explain results using theories from related research literature. We found a distinction among formats where nurturant support patterns in FP and Notes (EM>NET>EST) were consistently similar to each other within the offered dimension and within the requested dimension, but diverge from the other formats when comparing between the two dimensions (Figure 7-8). Patterns found among the journal messages (JP, JC) are also consistently similar patterns within offered dimension (EM>EST>NET) and requested dimension (EM&EST). FC is the only sample where the pattern offered (EM>EST>NET) was different from requested (EM=NET>EST). While the three CMC formats of Medhelp have similarities, the differences in architecture appear to impact the support exchanged. Comparing patterns with related studies Similar studies identifying social support in online health support communities found various levels for each nurturant support type [21, 28, 32, 31, 33, 6, 34, 19]. These studies gathered data from bulletin boards or email lists, the main format of choice, which is similar to MedHelp forums. In our best knowledge, there is not any documented cases of health support groups forming through alternate CMC formats similar to the journal or note formats, nor studies of social support among them. Many studies reporting from SNS are not tailored to a health issue, but rather general SNS (Facebook, MySpace, LinkedIn), where users may already know each other offline. YearAuthorDataArchitectural ElementsPatterns1999Preece Torn Knee Ligament, 500 msgs, April 1996 – April 1997Email ListNurturant > Information (no distinctions)1999Braithwaite et al“Support Network” 42 users, 1472 messages“Messages were distributed via E-mail through a nationwide computer BBS network.”EM > EST > NET2007BambinaSupport OnLine Cancer Forum 84 members.1149 messages (unmoderated)“an Internet cancer support forum … a virtual space … [to exchange] support” Only requires email address. Archives posted online and publically availableNET > EM2007Meier et al10 cancer mailing lists hosted by the Association of Cancer Online Resources (5 months)Mailing listsNurturant > Information (no distinctions)2007Pfiel & ZaphirisDepression/Seniors Bulletin BoardNET > EM > EST2008Cunningham et alAlcoholism10 months; 474 Posts (moderated)Bulletin BoardEM > EST2008Eichhorn5 Eating Disorder msg boards490 messagesYahoo Discussion GroupsEM > NET> EST2009Coursaris & LiuHIV/Aids5000 messagesBulletin BoardEM > NET > EST2010McCormack Anorexia Bulletin BoardBulletin BoardEM > NET > EST2010Selby et alSmoking cessationWeb assisted tobacco intervention, bulletin boardEST > EM Clearly, certain types of nurturant support (i.e. emotional) were favored by members of this Alcoholism community, but also by some other health support communities [28, 32, 33, 6, 19]. Results from the forum posts sample agree with a majority of previous findings from bulletin boards (EM>NET>EST). Interestingly, notes showed a similar pattern as the forum posts. However, JP & JC follow a different pattern (EST=EMO). We also noted a substantial amount of informational support in our data. The low amount of network support in journals may be that network support needs were met simply by participating in the community. Therefore, they did not have to explicitly state requests or offers of network support in journal format. For example, anyone can leave a note for a friend and not expect any response. However with journals, authors have more control over who can read and comment, so in that format it requires initiation of explicit support request to have any comments. That said they are more likely to post message for themselves. For example, one author wrote in her journal: “i doubt if anyone will read this and that is ok as I am writing this more for my benefit then anyone else. …” and probably does not expect a reply. In fact, the same post goes on to state, “I do not need anyone to tell me how lucky I am, how well off i am, or how good i look. I still feel very fragile and needed to just let someone know that might have a word or encouragement or knidness…[sic]”. Explaining these patterns Although offline support is often available from friends and family, however e-patients and their caregivers also participate in online support groups for additional and more specific types of nurturant support. We found different types of nurturing support in the MedHelp alcoholism community of varying patterns across the multiple CMC formats. Two theories might be able to explain why the amount of support types vary: (1) the purpose of communication affects which format people use to convey and seek different types of needs; and (2) the public and private spheres where communication is mediated by particular norms of acceptable behavior. Purpose of communication People use different communication tools for different purposes; for example some online community members sought information, while others sought compassion and intimacy through conversations [47, 22]. This distinction is possibly the result of numerous waves of information needs [7]. Presenting information need(s) to the community may be a way to initiate presence and involvement as a new member, but also for older members to welcome new members. While information is often explicitly stated within messages, sometimes participation is motivated by other reasons such as relationship maintenance [10,23]. In fact, results from notes support previous findings of MySpace profile wall posts, which mostly contained short messages to fulfill two purposes: making initial contact and keeping in touch [23]. Because it is so easy to publish information with social media technology, blogs are often used as way to share knowledge and skills, rather than to keep in touch with friends and family [48]. While the purpose of communication varies across CMC formats, it can also differ from purpose of the community. In this case, both the purpose of communication through notes and forum posts (i.e. reaching out to others with emotional and network supports) and purpose of community (i.e. connecting with other patients) overlap. For example access to other patients’ stories on the Internet can be reassuring [49]. In addition, social media makes it easier to obtain social feedback and reviews. People who are unsure about medical answers find confidence from social feedback [35]. Health issues trigger anxiety and questions, however, online communication with familiar folk can soothing as it might enhance quality of relationships and improve psychological well-being of support seeker [50, 29]. For example, most blogs allow readers to leave comments and, in this way, generate both conversation and encourage collaboration [48]. Users of online support communities often communicate in one-on-one situations or in small groups of 3-5 individuals [29]. Communal vs Personal Spaces Another reason for different nurturant support patterns in the various CMC formats can be explained by communication theory, which separates communication into those targeted to the public (i.e. mass media) or private interpersonal communication (i.e. email). In recent years, studies of online communication show that social media mimics physical spaces by providing online spaces for communication but are used to exchange private information. The distinction between the traditionally public and private spheres is blurred in online communication [9,17]. We believe that because privacy can be controlled through notes and journals, we can distinguish these as private spheres, which is more personal, and the forum as a public sphere, where conversations are exchanged in a community setting. While the sphere may be a factor that influences behavior on each format, we believe that the CMC format itself is the driving factor for different behavior patterns. For example, notes are similar to forum posts, where as forum comments are similar to journal posts and journal comments. It is possible that people are not aware of privacy issues in an online environment or do not find it necessary to control privacy settings or learn about their implications. In a physical setting, it is easy for one to perceive the relative privacy of the space. However, in an online environment, the amount of privacy is not as transparent, and many private areas are ‘publicly private’. In this case, perhaps the MedHelp users did not assess the online setting as they would a physical face-to-face setting. In light of the content observed through this community (i.e. blackouts, possible violent episodes, etc), the online setting diminishes amount of stigma that would be present in face-to-face support. Emerging issues: collaboration and health outcomes In the course of identifying support types, we also found evidence of users in the alcoholism community mentioning their health outcomes (i.e. quitting drinking) or of collaboration. Although it has been shown that bulletin boards do not have a big effect on behavior change such as smoking cessation, it is often a component in web intervention programs for allowing participants to communicate [51]. It is not a primary information source or for everybody as only certain people will voluntarily use it and often have a small core set of active users. Participation is also linked to other factors such as an e-patient’s phase of quitting (i.e. former smokers will have higher participation than those pre-quitting), and speed of responses to posts. Social media allows direct connection between information and consumer [52]. Social networking enables and facilitates collaboration and collaborative filtering processes. For example, it enables users to see what their peers or others with a predefined relationship (“friends”, “colleagues”, “fellow patients” etc.) are doing; enables automated selection of “relevant” information (based on what peers are doing and reading on the Web); enables reputation and trust management, accountability and quality control, and fosters viral dissemination of information and applications (it is this “viral marketing” aspect that makes Web 2.0 applications so attractive to venture capitalists and public health practitioners alike). Moreover, social networking is a potentially powerful tool to engage users, in that it provides “social” incentives to enter, update, and manage personal information. Teenagers spend hours keeping their Facebook profile current, constantly updating their status. The same generation of users may possibly turn their attention and energy to similar tools for health. Future Work More research to better understand how social support is communicated among CMC formats in these groups would be particularly useful to those interested in designing, providing, using, or evaluating online support as an alternative to face-to-face support. Knowing how to develop and sustain an online community is important, as a certain level of active users from peer families and visible signs of their activity are necessary to attract returning users [53]. Potential benefits of SNS participation for e-patients include peer support (availability of opportunity to receive and offer support), which can be an empowering experience in a customizable setting (i.e. limited identity information reveals or restricted number of friends). Not only that, a personalized space could help patients open up about their health issues. This could be beneficial to the area of preventive medicine. Future work that identifies patterns at the message level rather than patterns for each sample would help with understanding the construction of each message. This study did not account for the individual characteristics such as each member’s support profile, such as whether he or she are more likely to provide or request support. Future work that identified whether support was given explicitly to a recipient could be useful. Another direction for future work is to explore theories on personas at an individual level. For example, the theory of faceted social identity in sociology states that people behave differently to different groups. Users communicate with different categories of relationships online [54]. Users will present identities depending on who they are communicating with and seek different types of support. For example, close friends are more likely sources of emotional support. Email is thought of as more personal and “private” than SNS and users are more likely to experience more comfort in using that platform to communicate with close relations [54]. Some users may also be motivated to keep in touch with others whereas others want to share information [47, 48, 22]. Age can also be a factor in activeness online. Yet another research angle for studying patient communities is shared patient data, which is mostly quantitative data (i.e. blood pressure) rather than quantitative data such as stories and advice [55, 56]. Participants often look for similar patients (by medical ailment in common, hobby, or other thoughts) to make their connections. Websites such as PatientsLikeMe “promote data-centered patient conversations”. This might be a good direction, as there are many lurkers in support communities [57], who feel that reading community messages is enough to feel sense of belonging to the collective intelligence. The influence of interpersonal association on personal health records could lead to improved health outcomes as people become more aware of their day-to-day behaviors. Conclusion People are drawn to online health support communities because of the availability tailored information and also opportunities to meet peers who share similar experience(s). Emotional support is an important component to interactions within support groups; however it varies in exchange across different social media communication formats for reasons such as demographics, and formats of communication tools. We found two general patterns in offered nurturant support and three general patterns in requested nurturant support. Offered nurturant support is typically emotional support such as encouragement, then either esteem (i.e. validation) or network (i.e. reminders of presence) supports. Requested support was also typically emotional support, but with more network than esteem support. There was no mention of network support in the journal posts or comments. We attempted to link theories with results to explain the supportive behaviors. Theoretical perspectives include: (1) purpose of communication, where people use different platforms differently to convey different types of information; and (2) public and private spheres of communication will influence the users’ behavior. Further research could provide more insight into this phenomenon. Bibliography ,[object Object]

Tufekci Z, Can you see me now? Audience and disclosure management in online social network sites, B Sci Tech 2008.

Boase J, Horrigan J, Wellman B, Rainie L. The strength of internet ties: The internet and email aid users in maintaining their social networks and provide pathways to help when people face big decisions, tech. rep., Pew Internet and American Life Project, 2006.

Fox S, Jones S. The social life of health information Americans’ pursuit of health takes place within a widening network of both online and offline sources. 2009 http://www.pewinternet.org/Reports/2009/8-The-Social-Life-ofHealth-Information.aspx.

Cohen S, Social relationships and health, Am Psychol 2004, 59(8):676–684.

McCormack A. Individuals with eating disorders and the use of online support groups as a form of social support, CIN, 2010, 28(1):12–19.

Radin PM. "Hello, my friends": Social capital and transformations of trust in a grassroots breast cancer Website. PhD thesis, University of Washington, United States – Washington, 2001.

Wright KB, Bell S. B, Health-related support groups on the internet: Linking empirical ﬁndings to social support and computer-mediated communication theory, J Health Psychol 2003, 8(1):39–54.

Papacharissi Z. The virtual geographies of social networks: A comparative analysis of Facebook, LinkedIn and ASmallWorld, New Media & Society 2009, 11:199–220.

Ahn Y, Han S, Kwak H, Moon S, Jeong H. Analysis of topological characteristics of huge online social networking services, in Proc Intl WWW, (Banff, Alberta, Canada), 2007, 835–844, ACM. http://www2007.org/papers/paper676.pdf.

Boyd d,Ellison N. Social network sites: Definition, history, and scholarship, JCMC 2007, 13(1).

Cunningham AJ, Humphreys K, Kypri K, van Mierlo T. Formative evaluation and Three-Month Follow-Up of an online personalized assessment feedback intervention for problem drinkers J Med Internet Res 2006, 8(2):e5.

Linke S, Murray E, Butler C, Wallace P. Internet-Based interactive health intervention for the promotion of sensible drinking: Patterns of use and potential impact on members of the general public, J Med Internet Res 2007, 9(2):e10.

Riper H, Kramer J, Keuken M, Smit F, Schippers G, Cuijpers P. Predicting successful treatment outcome of Web-Based self-help for problem drinkers: Secondary analysis from a randomized controlled trial, J Med Internet Res 2008, 10(4):e46.

Webb TL, Joseph J, Yardley L, Michie S. Using the internet to promote health behavior change: A systematic review and meta-analysis of the impact of theoretical basis, use of behavior change techniques, and mode of delivery on efficacy, J Med Internet Res 2010, 12(1), e4.

Preece J. Online communities: Supporting sociability, designing usability. New York; Chichester: Wiley, 2000.

Smith KM. “Electronic Eavesdropping”: The Ethical Issues Involved in Conducting a Virtual Ethnography, In Online Social Research: Methods, issues, & ethics 2004:223-238.

Walstrom M. Seeing and sensing online interaction: An interpretive interactionist approach to USENET support group research. In Online social research: Methods, issues, & ethics 2004:81–97.

Preece J. Empathy online, Virtual Reality 1999, 4(1):74–84.

Beattie MC, Longabaugh R. General and alcohol-specific social support following treatment. Addictive Behaviors 1999, 24(5):593–606.

Bambina AD. Online Social Support: The Interplay of Social Networks and Computer-Mediated Communication. Cambria Press, 2007.

Rau PP, Gao Q, Ding Y. Relationship between the level of intimacy and lurking in online social network services, Computers in Human Behav 2008, 24(6):2757–2770.

Thelwall M, Wilkinson D. Public dialogs in social network sites: What is their purpose? J Am Soc Inf Sci Technol 2010, 61(2):392–404.

Nurturant Support in Online Health Social Networking

Recommandé

Recommandé

Contenu connexe

Tendances

Tendances (19)

En vedette

En vedette (14)

Similaire à Nurturant Support in Online Health Social Networking

Similaire à Nurturant Support in Online Health Social Networking (20)

Plus de Kat Chuang

Plus de Kat Chuang (6)

Nurturant Support in Online Health Social Networking