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“Please Know That You Are Not Alone with Your Pain”: Responses to Newcomer Posts in an Online Grief Support Forum a
b
Trena M. Paulus & Mary Alice Varga a
Qualitative Research Program, Department of Lifelong Education, Administration & Policy, University of Georgia, Athens, Georgia, USA b
Department of Educational Technology & Foundations, University of West Georgia, Carrollton, Georgia, USA Accepted author version posted online: 29 May 2015.Published online: 29 May 2015.
Click for updates To cite this article: Trena M. Paulus & Mary Alice Varga (2015): “Please Know That You Are Not Alone with Your Pain”: Responses to Newcomer Posts in an Online Grief Support Forum, Death Studies, DOI: 10.1080/07481187.2015.1047060 To link to this article: http://dx.doi.org/10.1080/07481187.2015.1047060
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Death Studies, 0: 1–8, 2015 Copyright # Taylor & Francis Group, LLC ISSN: 0748-1187 print/1091-7683 online DOI: 10.1080/07481187.2015.1047060
“Please Know That You Are Not Alone with Your Pain”: Responses to Newcomer Posts in an Online Grief Support Forum Trena M. Paulus
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Qualitative Research Program, Department of Lifelong Education, Administration & Policy, University of Georgia, Athens, Georgia, USA
Mary Alice Varga Department of Educational Technology & Foundations, University of West Georgia, Carrollton, Georgia, USA
In an effort to better understand how the Internet can provide support to bereaved individuals, this discourse analysis study examined the responses to 107 initial posts in an online grief support group to understand how newcomers’ bids for group membership were taken up by current members. Discursive features included validation and empathy through second stories, constructing grief through descriptions, and accepting bids for membership through advice giving and invitations to return to the group. These features illustrate how grief and being a griever are constructed in an online context and how they deviate from the “normal” grief expectations in the offline world.
Whether they are memorializing the dead, seeking resources, or sharing their experiences with others, bereaved individuals are finding a number of ways to use the Internet in their grieving process (Roberts, 2004; Sofka, Culpti, & Gilbert, 2012; Walter, Hourizi, Moncur, & Pitsillides, 2012). Recent studies have looked at public mourning on Facebook (Brubaker, Hayes, & Dourish, 2013; Pennington, 2013), Facebook memorial groups (DeGroot, 2014), memorial guestbook messages (Klaassens & Bijilsma, 2014), and even avatar “virtual veneration” (Bainbridge, 2013). Aside from social media, online grief support groups, in particular, are becoming an increasingly popular resource for the bereaved (Finfgeld, 2000; Hollander, 2001; Swartwood, Veach, Kuhne, Lee, & Ji, 2011) and exist in many forms. For example, support groups using synchronous communication, such as the Compassionate Friends Network, provide individuals with real-time interactions with others. Those that provide a space for asynchronous communication
(e.g., Griefnet.org) are free of time restrictions, allowing individuals to post and respond from wherever they are. In a previous paper (Varga & Paulus, 2014) we outlined how newcomers to an asynchronous online grief support group displayed their eligibility for group membership in their initial posts. Three discursive features were identified —formulating unusual stories of loss, describing extreme and uncontrollable emotional and physical states, and engaging in “troubles telling” rather than requests for advice. These findings suggest that grief may be constructed differently online than offline and that the need for validation of “extreme” grief experiences might prompt individuals to seek online support. The purpose of this study was to examine the initial responses made by community members to the newcomer posts that we analyzed in our earlier study (Varga & Paulus, 2014). We used discourse analysis to explore how these newcomers’ bids for group membership were treated by the current members, in order to better understand how grief is constructed in this online context. REVIEW OF LITERATURE
Received 25 September 2014; accepted 21 April 2015. Address correspondence to Trena Paulus, Qualitative Research Program, Department of Lifelong Education, Administration & Policy, University of Georgia, 850 College Station Road, 310 River’s Crossing, Athens, GA, 30602, E-mail: [email protected]
Although there have been an increasing number of studies examining online grief support groups from a variety of perspectives, only three studies have focused on the actual
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messages exchanged in these groups. In addition to our study (Varga & Paulus, 2014), Hollander (2001) analyzed emails, grief websites, interviews, and face-to-face support groups for suicide survivors and found that social stigma surrounding suicide created feelings of exclusion among those who were grieving. Swartwood et al. (2011) analyzed responses to initial messages posted in an online support group and found themes of self-disclosure, exchanging hope, validating the grief experience, providing resources, and psychosocial support. Other studies of newcomers to online support groups have shown that displaying legitimacy is crucial to becoming an accepted community member. Stommel and Meijman (2011) found that newcomers to an online eating disorders support group self-presented as having had an official diagnosis, and that the lack of such a diagnosis was treated as a problem by the community. They noted that “newcomers are expected to design their self-presentations in such a way that they subscribe to community norms” (p. 7). This is consistent with Mudry and Strong’s (2012) description of recovering gamblers displaying their illness by following forum norms and scripts in their initial posts in order to be accepted by the group. Horne and Wiggins (2009) found that newcomers to an online suicide support group and the established members worked together to construct their identities as “authentically” suicidal and thus eligible for membership in the community. Fewer studies, however, have focused on replies to these newcomer messages. Morrow (2006) noted that response posts in an online depression support group contained reciprocal sharing of personal experiences, empathy, and advice—even when the initial post did not request advice. In an online fertility support group, Malik and Coulson (2010) found that 45% of the messages contained empathy, 45.4% contained personal experiences, and 15.9% contained advice. When given, advice has been found to be shared through stories of personal experience (Sillence, 2013) because members are not professionals and thus must establish their qualifications for providing the advice (Morrow, 2006; Veen, te Molder, Gremmen, & van Woerkum, 2010). Advice, when given, is offered in ways consistent with politeness theory (Brown & Levinson, 1987), so that it does not threaten the self-image of the community members (Cranwell & Seymour-Smith, 2012; Sharkey et al., 2012). Giles and Newbold (2013) demonstrated how online support group talk validated new member experiences and assured them that they met the norms of the community. In our previous study we noted the newcomers’ search for validation and legitimization of what those in the offline world were treating as “non-normal” grieving experiences. As Boelen and Prigerson (2012) noted, “dysfunctional grief” becoming part of the DSM-5 has made prolonged grief, complicated grief, and persistent complex bereavement-related disorder all topics of debate. Penman, Breen,
Hewitt, and Prigerson (2014) found that most people expect grief to decrease steadily between 2 weeks and 6 months, and to then stabilize. They noted a lack of research on the views, expectations, and social norms around grief and bereavement. They suggested more research into these norms, along with how these norms affect the bereaved, to provide more insight on how to classify pathological and nonnormal grief symptomologies in the DSM-5 and International Classification of Diseases (ICD). Understanding how people talk about grief online may provide useful guidance for these diagnostic issues, including how the bereaved communicate their grief and how it is responded to by others. Neimeyer, Klass, and Dennis (2014) positioned grief and mourning as a social rather than individual act, arguing that “discourses construct the identity of the deceased” and that “society polices bereavement” (p. 493). We propose that discourses also construct the identity of the mourner, as well as grief itself. Because a growing number of grieving individuals are seeking out online support, it is important to understand whether and how bids for membership by newcomers are taken up by the community. The interactions between community members and newcomers in online support groups have been identified as a useful site for understanding how experiences such as grief are constructed and understood by those who are grieving. Responses to newcomers have been found to contain validation of their experiences (Horne & Wiggins, 2009; Stommel & Lamerichs, 2014), modeling of group norms (Stommel & Meijman, 2011), and advice (often unsolicited) that contribute to constructing a certain version of the experience being discussed (Vayreda & Antaki, 2009). A discursive focus not only sheds light on how communities respond to the newly bereaved, but also, perhaps more importantly, provides insight into how “normal” bereavement is negotiated in these environments.
METHODS Discursive psychology, which explores how actions are accomplished by language choices, provided the theoretical and methodological framework for the current study (Edwards & Potter, 1992, 1993; Potter & Wetherell, 1987). Discursive psychology can be used as a lens for understanding how complex identities and topics are taken up by participants in online support groups, such as vegans constructing dietary restrictions as a matter of individual choice, celiac disease patients constructing a gluten-free diet as the only option available (Veen, te Molder, Gremmen & van Woerkum, 2013), and self-harm being constructed as a routine part of a “biomedicalized narrative” (Smithson et al., 2011a, 2011b). Data were collected from one online grief support group, which, at the time of the study, had 6,237 members, 16
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forums, and 77,483 total posts. Forums were categorized around specific types of bereavement (child, spouse, parents, etc.), general grief and loss (resources for healing), and tributes and remembrances (honoring loved ones and special anniversaries). The forums are moderated by certified bereavement counselors; however, most posts are made by members. Members must register to post and are encouraged to use pseudonyms to protect their identity, given the public nature of the site. Although only registered members are allowed to post, all posts are visible to the public and a clear warning is posted on the site to inform members of this. Because of the public nature of the site, our institutional review board did not require us to obtain informed consent. We followed the Association of Internet Researchers ethical guidelines (Markham & Buchanan, 2012) and data collection techniques described by other Internet researchers (Gavin, Rodham, & Poyer, 2008; Riley, Rodham, & Gavin, 2009). To provide an additional layer of protection, we assigned our own pseudonyms to the authors of the posts and changed all potentially identifiable details such as years, dates, and ages to reduce the risk of participant identification. Discourse analysis as informed by discursive psychology was used as the qualitative research method for this study (Wood & Kroger, 2000). In general, qualitative research is used to provide deep descriptions of complex human experiences and interactions from the perspective of those involved. Discourse analysis, in particular, uses language as a lens for understanding human interaction. To this end, we analyzed the first response to the 109 newcomer posts in the forum for loss of a spouse, partner, or significant other. This forum is the most active on the site with over 3,000 posts and approximately 40,560 responses at the time of data retrieval. Rather than “coding” per se, discourse analysts focus on how texts are constructed by their creators, analyzing the texts for patterns and themes related to the research questions (MacMillan, 2005; Wood & Kroger, 2000). As explained in detail by Wood and Kroger (2000), discourse analysis, not to be confused with content analysis, is an interpretive methodology in which claims are warranted not through conventional measures of inter-rater reliability but rather through criteria of trustworthiness and soundness, such as keeping an audit trail (through the use of ATLAS.ti™) and demonstrating the analysis for the reader through the re-analysis of the data (as illustrated in the Findings section). We took a collaborative and iterative approach to the analysis. Our analytic approach was similar to the one taken when analyzing the initial posts (Varga & Paulus, 2014). We generated interpretations of what the discursive features accomplished and provided reflexive and transparent demonstration of claims (Potter & Wetherell, 1987) through this analytic approach: (a) repeated readings; (b) selection, organization, and identification of patterns; (c) generation of explanations; and (d) reflexive and transparent documentation
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of claims. In our initial readings, we familiarized ourselves with the posts. This familiarity allowed us to identify patterns and variation across the data set, as we attended to those sections that we found striking and surprising. During this first step of analysis, we met regularly to review each post, recording our individual and joint reflections about those sections within each post that we initially found most intriguing (Potter & Wetherell, 1987). We next re-read each post in its entirety several times, noting patterns and conversational features. As we re-read, the following broad, discourse analytic questions sensitized our analytic process, as discussed by Potter (2004): (a) What are the participants doing/accomplishing with their language? Specifically, how are newcomer bids for membership being taken up by current members? (b) How are they constructing their language in order to achieve this? Specifically, how are the responses constructed in order to do this? and (c) What discursive resources are being used to perform these tasks? These initial readings prepared “the way for a much more intensive study of material culled through the selective coding process” (Potter & Wetherell 1987, p. 167). We used ATLAS.ti version 7™ to organize the data and systematize the analysis process, annotating the data using the memo, comment and coding features. Throughout the analysis process, we kept both analytic and theoretical memos in the software package. We met regularly to discuss and identify what we came to view as the regularity and variability across the data set. After several cycles of analysis, all of which were documented in ATLAS.ti™, we formed tentative explanations as to what the various discursive features were doing, moving back to the data to ground our claims. Finally, by presenting a detailed description of our analysis process, we aimed to reflexively report our claims. As is typical in discourse analysis studies, our findings are not organized by themes or by a description of what is being said; rather our focus is on how language choices and discursive resources in the posts were used to accomplish specific tasks. Our findings are demonstrated by presenting “one or more discourse excerpts, followed by their detailed analysis” (Wood & Kroger, 2000, p. 183) and by “going through the excerpt in detail in order to show how a claim is grounded” (p. 184), in essence reproducing the analysis for the reader. Our findings are warranted not by providing multiple examples, but by reworking the analysis of representative excerpts to show what the language is doing.
FINDINGS All but one of the 106 newcomer posts received a reply. A post that simply shared a link to a blog did not receive a reply, reinforcing previous findings that there are norms that must be followed to receive one (Mudry & Strong, 2012; Stommel & Meijman, 2011). Discursive features prevalent across the response posts included (a) validation
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and empathy through “second stories” (Arminen, 2004), (b) constructing grief through descriptions, and (c) accepting bids for membership through advice giving and invitations to return. We use extracts from the first responses to the newcomer posts described in Varga and Paulus (2014) to illustrate these findings.
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Validation and Empathy Through Second Stories Responses to newcomer posts frequently opened by welcoming the newcomer to the group, referred to as a “club no one wanted to join” and by extending empathy. These expressions of empathy were often followed by or intertwined in “second stories” (Arminen, 2004) whereby the member shared their own loss and grief experiences. Second stories echo the symbolic meaning of the previous story and are often constructed to provide support and establish solidarity between speakers (Arminen, 2004). For example, the response to Dana opened with,“I am so sorry for your loss. All of us here understand the pain and the yearning to be reunited. I lost my spouse going on 3 years ago. Most of us have written the same words you wrote. You have come to the right place.” Like many of the responses, this one opens with an expression of empathy toward the bereaved (“I am so sorry for your loss”), followed by a reassurance that everyone in the online support group (unlike in the face to face world) can relate to the newcomer’s grief experience (“all of us here understand the pain,” “most of us have written the same words you wrote”), no matter how extreme. This functions to construct a common grief experience. The lexical choice “yearning” emphasizes the ongoing nature of the experience. After this, a short second story of their own loss is shared, including who died and when (“my spouse,” “going on 3 years ago”). The response ends by accepting the newcomer’s bid for membership by saying, “You have come to the right place.” The response to Harriett’s initial post opened with a longer second story about the loss of the responder’s husband, Norm: Oh, Harriett, my heart goes out to you. My husband, Norm died in hospital, just days after his surgery and it was totally unexpected, so I know something of what you’re going through. My Norm died 3 months ago and it has only been in the last couple of days that I’ve begun to accept that the noises the house makes when the furnace comes on, etc., isn’t Norm moving around or walking to the kitchen to make a coffee or whatever. Mind you, I still sometimes find it difficult to believe that it happened at all. I find myself looking at a picture of Norm and shaking my head in disbelief that I don’t have the flesh and blood Norm with me.
Similar to the response to Dana, this one opens with an expression of empathy (“my heart goes out to you”). The
response continues with a more detailed second story, including who died (“my husband, Norm”) and echoing the unexpected nature of the death (“it was totally unexpected”), a pattern across the newcomer posts (Varga & Paulus, 2014). This responder, too, constructs a common grief experience with room for variation by saying, “I know something of what you’re going through”—something, but not everything. The response also emphasizes the ongoing nature of the grief—in that it has been 3 months since her loss but it “has only been in the last couple of days” that she is accepting that he is gone, and that it is still “difficult to believe that it happened at all.” This response echoes the uncontrollable emotional and physical states described by the newcomers in their initial posts (Varga & Paulus, 2014), with phrases such as “I find myself looking at a picture … and shaking my head in disbelief”—the action of looking at a picture and shaking her head is what she finds herself doing—it is out of her control. Overall, the responses directly validated the newcomer questions as to whether what they were experiencing was normal (Varga & Paulus, 2014). The details of the loss, unusual circumstances of death, and uncontrollable emotional and physical states shared in the initial newcomer posts are mirrored in these second stories. Responses affirmed that although others outside the grieving community may not understand the grief experience, the members in the online group do understand, as seen in the response to Dana: We all get it. Like my family and some friends, they just do not understand your loss and how it impacts every minute of every day, every dream. No one can walk in your shoes but the folks here come very close to it as we are all walking this horrible path.
In this way, the newcomers’ troubles-telling of how others “just do not understand” is taken up as a legitimate way of entering the group (“we are all walking this horrible path”). Just like in the newcomers’ experiences, the members’ families and friends do not understand, and grief is constructed as something that is both extreme and pervasive (“every minute of every day, every dream”). Grief is a common experience, yet also unique—while “no one can walk in your shoes” (unique), “the folks here come very close to it” (common). Constructing Grief Through Descriptions We noted that across the responses, specific descriptions of grief were provided to the newcomer. As Edwards (1997) has pointed out, “one of the most important features of descriptions is their could-have-been-otherwise quality” (p. 8). That is, each description of grief constructs a particular version of it, in the case of our data a version that validated as “normal” the extreme emotional and physical
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states displayed in the newcomer posts. The response to Dana’s initial post noted that, “Grieving is unique to each person and we live in a culture that does not deal well with grief once a few weeks have passed.” This emphasized the normality of grief extending past what those who are not grieving may consider normal. Sandy’s responder wrote, “It has only been a few months, please do not expect to [sic] much from yourself right now. Dealing with the passing of your loved one is very hard on you emotionally and physically as well.” Thus, emotional and physical distress is included as part of the description of normal grief. The responder to Harriett’s post wrote: “All of us here would say that we can go on … some of us just take longer than others, but we DO go on whether we like it or not.” Grieving is constructed as continuous—it is never over. This stands in direct contrast to newcomer reports of how their grief was described by their offline family and friends—as problematic. We noted a dilemma in the responses across the second stories and the descriptions: That grief is unique to everyone, but at the same time common enough that one’s grief can be said to be “normal.” Some members, such as in the response to Dana’s post, noted the individual and unique nature of grief. Others offered definitions of grief that positioned it as having similar features for everyone, such as a “roller coaster of emotions” or simply “powerful stuff.” These descriptions of grief, often intertwined with advice giving, were used to construct a version of grief. Other responses included, “You may not find anyone here who matches your exact circumstances, but you will find people who have gone through the trauma of losing a person they loved.” This again positions grief as unique, but also universal, therein presenting a dilemma for the bereaved. Membership Acceptance Through Advice Giving and Invitations to Return As has been noted in other studies of online support groups, even when newcomers do not directly ask for advice in their posts, members often included advice in their responses (Morrow, 2006). This was true in this group as well. The response to Linda’s post included the advice that, “If you find yourself depressed for months on end, you might wish to consider seeing a psychiatrist, explain your situation to him/her and request to give anti depressant medication a try.” Here a distinction is made, though, between being “depressed” and experiencing grief. The advice is presented through an if-then construction, which can serve as a script formulation (Edwards, 1997) “if you find yourself depressed … you might wish to consider.” Rather than engage in any kind of intense therapy, the responder encourages Linda to simply “explain your situation and request to give medication a try.” Depression is constructed as a natural by-product of grief that can be reasonably treated with medication.
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The response to Sandy’s post, too, contained advice: Try to eat healthy, get as much rest as you can, and do not let others close to you tell you how or what you should be doing. It helps to get into a grief support group. I go to Hospice meetings every week in 2 different towns, with the same counselor.
The responder’s advice (eating healthy, getting rest, joining a support group) is presented as legitimate through the use of commands and is contrasted with any advice that those outside of the online community might present: “Do not let others close to you tell you how or what you should be doing.” Instead the newcomer should do what the member is doing, which is to find and attend a support group (“I go to Hospice meetings every week in 2 different towns”). The response to Dana’s post, too, encouraged seeking out face to face support as the member had also done “I hope you have sought out a local grief support group. I did and I saw a grief counselor also … it all helps and I urge you to consider it.” Across the responses we saw recommendations to find face-to-face support, such as professional counselors, grief support groups, and spiritual advisors, but also to continue returning to the online group—thus accepting the newcomer bid for membership. The newcomers were nearly always encouraged to return to the group. The responses often started with a salutation and the name of the newcomer (e.g., “Dear Dana”) and often ended with a question for the newcomer to answer, which served to both welcome the newcomer and accept their bid for membership by encouraging them to return. The response to Dana’s post specifically included the phrase, “keep coming back here” as did the response to Sandy, “I would like to welcome you this wonderful place where there is a lot of great people who can help you in this deep dark despair … most of all keep coming back.” The response specifically welcomed the newcomer to the online group, which is described as a “wonderful place” with “a lot of great people” who can provide support even in the most extreme cases, e.g., “deep dark despair.” The response to Harriett’s post also emphasized the extreme nature of grief, “You’re very early into this loathsome experience” and validated her entry into the group, “but you’ve come to the right place.” Harriet’s respondent asked her to provide additional details about her loved one, “Please tell us about your husband and your life together. Sharing our loved ones’ lives and stories always seems to help.” Just as the response to Sandy closed with, “most of all keep coming back”, the request for more stories invited Harriet to return, with the sharing of stories described as a therapeutic activity. DISCUSSION Although face-to-face support group facilitators are often reluctant to facilitate online groups (Lubas & De Leo, 2014), they are often willing to refer clients to them if
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offline ones cannot be found. A greater awareness of what happens in online groups can therefore be of use to counselors contemplating whether or not to refer their clients to them. Across the data, the online support group members accepted the newcomer bids for membership, except in one case when the initial post was simply an advertisement for a blog. Responses typically began by welcoming the newcomer with expressions of empathy and second stories which functioned to validate the newcomers’ extreme experiences of grief and legitimize their bid for membership. Responses also provided descriptions of grief and gave advice, both of which served to construct a certain version of the grief experience. Newcomers were encouraged to return to the community and continue sharing their stories. This pattern illustrates how current members accepted the newcomer bids for group membership, validated their often extreme grief experiences, and co-constructed a version of “normal grief” that may differ from that of the offline world. The use of second stories was prevalent across the data. Second stories can demonstrate understanding of the first story, as well as offer solutions or empowerment in response to problems highlighted in the first story (Arminen, 2004). Second stories can also be used to provide advice without it being articulated as such (Veen et al., 2010), with the stories showing newcomers how to put their experiences into the proper context for the group. Here, we saw the second stories validate the extreme nature of their grief. Giles and Newbold (2013) in their study of an online support group for mental illness argued that it is the social support and construction of “normality” that is the group’s most important function. They noted, too, that second stories function to reassure members that they meet community norms. Although newcomers did not explicitly ask for advice, current members often gave recommendations to the newcomers on how to cope, often by encouraging them to find face-to-face support (Giles & Newbold, 2011). Giving unsolicited advice can serve as another way for current members to accept newcomer bids to join the community (Vayreda & Antaki, 2009). Vayreda and Antaki (2009) illustrated how unsolicited advice introduced newcomers to an online bipolar support group to the very meaning of bipolarity itself. This is similar to how members in the online grief support group provided advice that reinforced the description of grief that was being constructed. Similar to other studies on advice giving, members gave advice based on their personal experiences, constructing grief as a universal experience, while simultaneously reassuring the newcomer that any unique features they may present are not unusual (Morrow, 2006). This is an important function since newcomers in this online grief forum often came to the community seeking validation that their grief was “normal” (Varga & Paulus, 2014). Current community members presented a description of grief based on their personal experiences and validated newcomers’ grief
experiences, no matter how extreme, by affirming the complexity and intensity of the grieving process (Varga & Paulus, 2014). We noted a dilemma whereby grief was constructed as both an experience unique to an individual but also one predictable enough to be able to reassure newcomers that their extreme experiences were “normal.” This finding was similar to Cranwell and Seymour-Smith (2012) who noted in their study of an online support group for those with bariatric surgery that a “lack of appetite” was constructed simultaneously as something to celebrate but also an issue that needed to be addressed. In this online support group members were “actively resisting the dominant cultural narratives that script the ‘proper’ performance of grief in a manner coherent with the prevailing social order” (Neimeyer et al., 2014, p. 496). Our findings raise questions around what constitutes normal, prolonged or complicated grief. The bereaved’s attempt to identify a “new normal” is similar to findings of DeGroot and Carmack’s (2013) study of parental grieving on a blog. Members of this online grief support group worked to normalize and validate the often extreme suffering of newcomers’ grief experiences. Yet, there were no instances of the group “diagnosing” the bereaved member as having symptoms consistent with complicated grief (Lobb et al., 2010). Instead extreme grief was constructed as routine, as something to be expected (similar to studies of self-harm, Smithson et al., 2011a, 2011b; and the eating practices of vegans, Sneijder & te Molder, 2004, 2005, 2009). As evidenced from this study, descriptions of extreme emotional and physical states of pain were validated by the community and, while responders often recommended the newcomers seek face to face support, the “normalcy” of their grief was never questioned. An awareness of the types of responses and support that the bereaved get in online support groups can be useful to counselors. Just as the online community members advised newcomers to seek out face-to-face support, face-to-face counselors can recommend online support groups as places to engage in troubles-telling, share stories, receive advice and co-construct a description of grief that validates their experience. Findings from this study can also assist counselors with helping bereaved individuals and their loved ones better understand normal grief reactions. The extreme emotional and physical states of pain shared online may not always be shared in the offline world. The online world provides bereaved individuals with electronic courage, allowing them to explicitly describe their grief experiences without judgment. Just as the existing members in the online group validate these feelings and symptoms, counselors can help families understand the pain associated with grief as normal and encourage them to support the bereaved through these experiences. Social support in the online world provides a sense of cohesiveness in dealing with bereavement issues (Doveling, 2015) and transferring this support to the offline world would be beneficial for the bereaved.
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RESPONSES TO NEWCOMEER POSTS
Although this study expands our understanding of how members of an online grief support group respond to newcomers, additional research is needed. Because this study was limited to 106 response posts in one forum of one online grief support site, exploring additional support groups, social networking sites, and other arenas could enhance our understanding of how grief is constructed and normalized in online venues. Although each initial post by a newcomer usually resulted in numerous responses from other members, we analyzed only the initial response. Future studies could examine subsequent posts for variations from the pattern set by the initial response, as it is possible that members constructed their responses based on prior responses they had read. Discourse in face-to-face support groups could also be examined. Do newcomers seek validation in these offline environments as well? If so, do bereaved peers validate their feelings? Are similar discursive functions being used as in the online world? How is grief constructed in these settings? A study with faceto-face grief support groups could show how the construction of grief compares to that which we saw in the online environment. Finally, it is also important to understand how grieving individuals make meaning of their experience, particularly through the use of stories (Neimeyer, 2000). Arminen (2004) argued that “experiences are co-constructed through a series of stories” (p. 340) so insight on how stories help construct the meaning of grief would be useful. REFERENCES Arminen, I. (2004). Second stories: The salience of interpersonal communication for mutual help in Alcoholics Anonymous. Journal of Pragmatics, 36, 319–347. doi:10.1016/j.pragma.2003.07.001 Bainbridge, W. S. (2013). Perspectives on virtual veneration. The Information Society: An International Journal, 29, 196–202. doi:10.1080/ 01972243.2013.777312 Boelen, P. A., & Prigerson, H. G. (2012). Commentary on the inclusion of persistent complex bereavement-related disorder in DSM-5. Death Studies, 36, 771–794. doi:10.1080/07481187.2012.706982 Brown, P., & Levinson, S. C. (1987). Politeness: Some universals in language usage. Cambridge, UK: Cambridge University Press. Brubaker, J. R., Hayes, G. R., & Dourish, P. (2013). Beyond the grave: Facebook as a site for the expansion of death and mourning. The Information Society: An International Journal, 29, 152–163. doi:10.1080/ 01972243.2013.777300 Cranwell, J., & Seymour-Smith, S. (2012). Monitoring and normalizing a lack of appetite and weight loss: A discursive analysis of an online support group for bariatric surgery. Appetite, 58, 873–881. DeGroot, J. M. (2014). “For whom the bell tolls”: Emotional rubbernecking in Facebook memorial groups. Death Studies, 38, 79–84. doi:10.1080/07481187.2012.725450 DeGroot, J. M., & Carmack, H. J. (2013). “It may not be pretty, but it’s honest”: Examining parental grief on the callapitter blog. Death Studies, 37, 448–470. doi:10.1080/07481187.2011.649940 Doveling, K. (2015). Emotion regulation in bereavement: Searching for and finding emotional support in social network sites. New Review of Hypermedia and Multimedia 21 (1–2), 106–122. doi:10.1080/ 13614568.2014.983558 Edwards, D. (1997). Discourse and cognition. London, UK: Sage Publications.
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Edwards, D., & Potter, J. (1992). Discursive psychology. London, UK: Sage Publications. Edwards, D., & Potter, J. (1993). Language and causation: A discursive action model of description and attribution. Psychological Review, 100 (1), 23–41. Finfgeld, D. L. (2000). Therapeutic groups online: The good, the bad, and the unknown. Issues in Mental Health Nursing, 21, 241–255. Gavin, J., Rodham, K., & Poyer, H. (2008). The presentation of “proanorexia” in online group interactions. Qualitative Health Research, 18, 325–333. doi:10.1177/1049732307311640 Giles, D. C., & Newbold, J. (2011). Self- and other-diagnosis in user-led mental health online communities. Qualitative Health Research, 21, 419–428. doi:10.1177/1049732310381388. Giles, D. C., & Newbold, J. (2013). “Is this normal?": The role of category predicates in constructing mental illness online. Journal of ComputerMediated Communication, 18, 476–490. Hollander, E. M. (2001). Cyber community in the valley of the shadow of death. Journal of Loss and Trauma, 6, 135–146. doi:10.1080/ 108114401753198007 Horne, J., & Wiggins, S. (2009). Doing being ‘on the edge’: Managing the dilemma of being authentically suicidal in an online forum. Sociology of Health and Illness, 31, 170–184. doi:10.1111/j.14679566.2008.01130.x Klaassens, M., & Bijilsma, M. J. (2014). New places of remembrance: Individual web memorials in the Netherlands. Death Studies, 38, 283–293. doi:10.1080/07481187.2012.742474 Lobb, E. A., Kristjanson, L. J., Aoun, S. M., Monterosso, L., Halkett, G. K., & Davies, A. (2010). Predictors of complicated grief: A systematic review of empirical studies. Death Studies, 38, 673–698. doi:10.1080/07481187.2010.496686 Lubas, M., & De Leo, G. (2014). Online grief support groups: Facilitators’ attitudes. Death Studies, 38, 517–521. doi:10.1080/ 07481187.2013.873840 MacMillan, K. (2005). More than just coding? Evaluating CAQDAS in a discourse analysis of new texts. FORUM: Qualitative Social Research, 6 (3), Article 25. Malik, S. H., & Coulson, N. S. (2010). Coping with infertility online: an examination of self-help mechanisms in an online infertility support group. Patient Education and Counseling, 81, 315–318. Markham, A., & Buchanan, E. (2012). Ethical decision-making and internet research: Recommendations from the AOIR Ethics Working Committee (Version 2.0). Association of Internet Researchers. Retrieved from http://aoir.org/reports/ethics2.pdf Morrow, P. R. (2006). Telling about problems and giving advice in an Internet discussion forum: Some discourse features. Discourse Studies, 8, 531–548. Mudry, T. E., & Strong, T. (2012). Doing recovery online. Qualitative Health Research, 23, 313–325, doi:10.1177/1049732312468296 Neimeyer, R. A. (2000). Searching for the meaning of meaning: Grief therapy and the process of reconstruction. Death Studies, 24, 541–558. Neimeyer, R. A., Klass, D., & Dennis, R. (2014). A social constructionist account of grief: Loss and the narration of meaning. Death Studies, 38, 485–498. doi:10.1080/07481187.2014.913454 Penman, E. L., Breen, L. J., Hewitt, L. Y., & Prigerson, H. G. (2014). Public attitudes about normal and pathological grief, Death Studies, 38, 510–516. doi:10.1080/07481187.2013.873839 Pennington, N. (2013). You don’t de-friend the dead: An analysis of grief communication by college students through facebook profiles. Death Studies, 37, 617–635. doi:10.1080/07481187.2012.673536 Potter, J. (2004). Discourse analysis. In M. A. Hardy & A. Bryman (Eds.), Handbook of data analysis (pp. 607–624). London, UK: Sage Publications. Potter, J., & Wetherell, M. (1987). Discourse and social psychology. London, UK: Sage Publications.
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Stommel, W. J. P., & Lamerichs, J. (2014). Communication in online support groups: Advice and beyond. In H. Hamilton & W.-Y. S. Chou (Eds.), Handbook of language and health communication (pp. 198–211). New York, NY: Routledge. Stommel, W., & Meijman, F. J. (2011). The use of conversation analysis to study social accessibility of an online support group on eating disorders. Global Health Promotion, 18 (7), 1–9. doi:10.1177/ 1757975911404764 Swartwood, R. M., Veach, P. M., Kuhne, J., Lee, H. K., & Ji, K. (2011). Surviving grief: An analysis of the exchange of hope in online grief communities. Omega Journal of Death and Dying, 63, 161–181. doi:10.2190/OM.63.2.d Varga, M.A., & Paulus, T.M. (2014). Grieving online: Newcomers’ constructions of grief in an online support group. Death Studies, 38 (7), 443–449. doi:10.1080/07481187.2013.780112 Vayreda, A., & Antaki, C. (2009). Social support and unsolicited advice in a bipolar disorder online forum. Qualitative Health Research, 19, 931–942. Veen, M., te Molder, H., Gremmen, B., & van Woerkum, C. (2010). Quitting is not an option: An analysis of online diet talk between celiac disease patients. Health, 14, 23–40. Veen, M., te Molder, H., Gremmen, B., & van Woerkum, C. (2013). If you can’t eat what you like, like what you can: How children with celiac disease and their families construct dietary restrictions as a matter of choice. Sociology of Health and Illness, 35, 592–609. doi:10.1111/ j.1467-9566.2012.01519.x Walter, T., Hourizi, R., Moncur, W., & Pitsillides, S. (2012). Does the Internet change how we die and mourn? Overview and analysis. Omega Journal of Death and Dying, 64, 275–302. doi:10.2190/ OM.64.4.a Wood, L. A., & Kroger, R. O. (2000). Doing discourse analysis: Methods for studying action in talk and text. Thousand Oaks, CA: Sage Publications.
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“Please Know That You Are Not Alone with Your Pain”: Responses to Newcomer Posts in an Online Grief Support Forum a
b
Trena M. Paulus & Mary Alice Varga a
Qualitative Research Program, Department of Lifelong Education, Administration & Policy, University of Georgia, Athens, Georgia, USA b
Department of Educational Technology & Foundations, University of West Georgia, Carrollton, Georgia, USA Accepted author version posted online: 29 May 2015.Published online: 29 May 2015.
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Death Studies, 0: 1–8, 2015 Copyright # Taylor & Francis Group, LLC ISSN: 0748-1187 print/1091-7683 online DOI: 10.1080/07481187.2015.1047060
“Please Know That You Are Not Alone with Your Pain”: Responses to Newcomer Posts in an Online Grief Support Forum Trena M. Paulus
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Qualitative Research Program, Department of Lifelong Education, Administration & Policy, University of Georgia, Athens, Georgia, USA
Mary Alice Varga Department of Educational Technology & Foundations, University of West Georgia, Carrollton, Georgia, USA
In an effort to better understand how the Internet can provide support to bereaved individuals, this discourse analysis study examined the responses to 107 initial posts in an online grief support group to understand how newcomers’ bids for group membership were taken up by current members. Discursive features included validation and empathy through second stories, constructing grief through descriptions, and accepting bids for membership through advice giving and invitations to return to the group. These features illustrate how grief and being a griever are constructed in an online context and how they deviate from the “normal” grief expectations in the offline world.
Whether they are memorializing the dead, seeking resources, or sharing their experiences with others, bereaved individuals are finding a number of ways to use the Internet in their grieving process (Roberts, 2004; Sofka, Culpti, & Gilbert, 2012; Walter, Hourizi, Moncur, & Pitsillides, 2012). Recent studies have looked at public mourning on Facebook (Brubaker, Hayes, & Dourish, 2013; Pennington, 2013), Facebook memorial groups (DeGroot, 2014), memorial guestbook messages (Klaassens & Bijilsma, 2014), and even avatar “virtual veneration” (Bainbridge, 2013). Aside from social media, online grief support groups, in particular, are becoming an increasingly popular resource for the bereaved (Finfgeld, 2000; Hollander, 2001; Swartwood, Veach, Kuhne, Lee, & Ji, 2011) and exist in many forms. For example, support groups using synchronous communication, such as the Compassionate Friends Network, provide individuals with real-time interactions with others. Those that provide a space for asynchronous communication
(e.g., Griefnet.org) are free of time restrictions, allowing individuals to post and respond from wherever they are. In a previous paper (Varga & Paulus, 2014) we outlined how newcomers to an asynchronous online grief support group displayed their eligibility for group membership in their initial posts. Three discursive features were identified —formulating unusual stories of loss, describing extreme and uncontrollable emotional and physical states, and engaging in “troubles telling” rather than requests for advice. These findings suggest that grief may be constructed differently online than offline and that the need for validation of “extreme” grief experiences might prompt individuals to seek online support. The purpose of this study was to examine the initial responses made by community members to the newcomer posts that we analyzed in our earlier study (Varga & Paulus, 2014). We used discourse analysis to explore how these newcomers’ bids for group membership were treated by the current members, in order to better understand how grief is constructed in this online context. REVIEW OF LITERATURE
Received 25 September 2014; accepted 21 April 2015. Address correspondence to Trena Paulus, Qualitative Research Program, Department of Lifelong Education, Administration & Policy, University of Georgia, 850 College Station Road, 310 River’s Crossing, Athens, GA, 30602, E-mail: [email protected]
Although there have been an increasing number of studies examining online grief support groups from a variety of perspectives, only three studies have focused on the actual
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messages exchanged in these groups. In addition to our study (Varga & Paulus, 2014), Hollander (2001) analyzed emails, grief websites, interviews, and face-to-face support groups for suicide survivors and found that social stigma surrounding suicide created feelings of exclusion among those who were grieving. Swartwood et al. (2011) analyzed responses to initial messages posted in an online support group and found themes of self-disclosure, exchanging hope, validating the grief experience, providing resources, and psychosocial support. Other studies of newcomers to online support groups have shown that displaying legitimacy is crucial to becoming an accepted community member. Stommel and Meijman (2011) found that newcomers to an online eating disorders support group self-presented as having had an official diagnosis, and that the lack of such a diagnosis was treated as a problem by the community. They noted that “newcomers are expected to design their self-presentations in such a way that they subscribe to community norms” (p. 7). This is consistent with Mudry and Strong’s (2012) description of recovering gamblers displaying their illness by following forum norms and scripts in their initial posts in order to be accepted by the group. Horne and Wiggins (2009) found that newcomers to an online suicide support group and the established members worked together to construct their identities as “authentically” suicidal and thus eligible for membership in the community. Fewer studies, however, have focused on replies to these newcomer messages. Morrow (2006) noted that response posts in an online depression support group contained reciprocal sharing of personal experiences, empathy, and advice—even when the initial post did not request advice. In an online fertility support group, Malik and Coulson (2010) found that 45% of the messages contained empathy, 45.4% contained personal experiences, and 15.9% contained advice. When given, advice has been found to be shared through stories of personal experience (Sillence, 2013) because members are not professionals and thus must establish their qualifications for providing the advice (Morrow, 2006; Veen, te Molder, Gremmen, & van Woerkum, 2010). Advice, when given, is offered in ways consistent with politeness theory (Brown & Levinson, 1987), so that it does not threaten the self-image of the community members (Cranwell & Seymour-Smith, 2012; Sharkey et al., 2012). Giles and Newbold (2013) demonstrated how online support group talk validated new member experiences and assured them that they met the norms of the community. In our previous study we noted the newcomers’ search for validation and legitimization of what those in the offline world were treating as “non-normal” grieving experiences. As Boelen and Prigerson (2012) noted, “dysfunctional grief” becoming part of the DSM-5 has made prolonged grief, complicated grief, and persistent complex bereavement-related disorder all topics of debate. Penman, Breen,
Hewitt, and Prigerson (2014) found that most people expect grief to decrease steadily between 2 weeks and 6 months, and to then stabilize. They noted a lack of research on the views, expectations, and social norms around grief and bereavement. They suggested more research into these norms, along with how these norms affect the bereaved, to provide more insight on how to classify pathological and nonnormal grief symptomologies in the DSM-5 and International Classification of Diseases (ICD). Understanding how people talk about grief online may provide useful guidance for these diagnostic issues, including how the bereaved communicate their grief and how it is responded to by others. Neimeyer, Klass, and Dennis (2014) positioned grief and mourning as a social rather than individual act, arguing that “discourses construct the identity of the deceased” and that “society polices bereavement” (p. 493). We propose that discourses also construct the identity of the mourner, as well as grief itself. Because a growing number of grieving individuals are seeking out online support, it is important to understand whether and how bids for membership by newcomers are taken up by the community. The interactions between community members and newcomers in online support groups have been identified as a useful site for understanding how experiences such as grief are constructed and understood by those who are grieving. Responses to newcomers have been found to contain validation of their experiences (Horne & Wiggins, 2009; Stommel & Lamerichs, 2014), modeling of group norms (Stommel & Meijman, 2011), and advice (often unsolicited) that contribute to constructing a certain version of the experience being discussed (Vayreda & Antaki, 2009). A discursive focus not only sheds light on how communities respond to the newly bereaved, but also, perhaps more importantly, provides insight into how “normal” bereavement is negotiated in these environments.
METHODS Discursive psychology, which explores how actions are accomplished by language choices, provided the theoretical and methodological framework for the current study (Edwards & Potter, 1992, 1993; Potter & Wetherell, 1987). Discursive psychology can be used as a lens for understanding how complex identities and topics are taken up by participants in online support groups, such as vegans constructing dietary restrictions as a matter of individual choice, celiac disease patients constructing a gluten-free diet as the only option available (Veen, te Molder, Gremmen & van Woerkum, 2013), and self-harm being constructed as a routine part of a “biomedicalized narrative” (Smithson et al., 2011a, 2011b). Data were collected from one online grief support group, which, at the time of the study, had 6,237 members, 16
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RESPONSES TO NEWCOMEER POSTS
forums, and 77,483 total posts. Forums were categorized around specific types of bereavement (child, spouse, parents, etc.), general grief and loss (resources for healing), and tributes and remembrances (honoring loved ones and special anniversaries). The forums are moderated by certified bereavement counselors; however, most posts are made by members. Members must register to post and are encouraged to use pseudonyms to protect their identity, given the public nature of the site. Although only registered members are allowed to post, all posts are visible to the public and a clear warning is posted on the site to inform members of this. Because of the public nature of the site, our institutional review board did not require us to obtain informed consent. We followed the Association of Internet Researchers ethical guidelines (Markham & Buchanan, 2012) and data collection techniques described by other Internet researchers (Gavin, Rodham, & Poyer, 2008; Riley, Rodham, & Gavin, 2009). To provide an additional layer of protection, we assigned our own pseudonyms to the authors of the posts and changed all potentially identifiable details such as years, dates, and ages to reduce the risk of participant identification. Discourse analysis as informed by discursive psychology was used as the qualitative research method for this study (Wood & Kroger, 2000). In general, qualitative research is used to provide deep descriptions of complex human experiences and interactions from the perspective of those involved. Discourse analysis, in particular, uses language as a lens for understanding human interaction. To this end, we analyzed the first response to the 109 newcomer posts in the forum for loss of a spouse, partner, or significant other. This forum is the most active on the site with over 3,000 posts and approximately 40,560 responses at the time of data retrieval. Rather than “coding” per se, discourse analysts focus on how texts are constructed by their creators, analyzing the texts for patterns and themes related to the research questions (MacMillan, 2005; Wood & Kroger, 2000). As explained in detail by Wood and Kroger (2000), discourse analysis, not to be confused with content analysis, is an interpretive methodology in which claims are warranted not through conventional measures of inter-rater reliability but rather through criteria of trustworthiness and soundness, such as keeping an audit trail (through the use of ATLAS.ti™) and demonstrating the analysis for the reader through the re-analysis of the data (as illustrated in the Findings section). We took a collaborative and iterative approach to the analysis. Our analytic approach was similar to the one taken when analyzing the initial posts (Varga & Paulus, 2014). We generated interpretations of what the discursive features accomplished and provided reflexive and transparent demonstration of claims (Potter & Wetherell, 1987) through this analytic approach: (a) repeated readings; (b) selection, organization, and identification of patterns; (c) generation of explanations; and (d) reflexive and transparent documentation
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of claims. In our initial readings, we familiarized ourselves with the posts. This familiarity allowed us to identify patterns and variation across the data set, as we attended to those sections that we found striking and surprising. During this first step of analysis, we met regularly to review each post, recording our individual and joint reflections about those sections within each post that we initially found most intriguing (Potter & Wetherell, 1987). We next re-read each post in its entirety several times, noting patterns and conversational features. As we re-read, the following broad, discourse analytic questions sensitized our analytic process, as discussed by Potter (2004): (a) What are the participants doing/accomplishing with their language? Specifically, how are newcomer bids for membership being taken up by current members? (b) How are they constructing their language in order to achieve this? Specifically, how are the responses constructed in order to do this? and (c) What discursive resources are being used to perform these tasks? These initial readings prepared “the way for a much more intensive study of material culled through the selective coding process” (Potter & Wetherell 1987, p. 167). We used ATLAS.ti version 7™ to organize the data and systematize the analysis process, annotating the data using the memo, comment and coding features. Throughout the analysis process, we kept both analytic and theoretical memos in the software package. We met regularly to discuss and identify what we came to view as the regularity and variability across the data set. After several cycles of analysis, all of which were documented in ATLAS.ti™, we formed tentative explanations as to what the various discursive features were doing, moving back to the data to ground our claims. Finally, by presenting a detailed description of our analysis process, we aimed to reflexively report our claims. As is typical in discourse analysis studies, our findings are not organized by themes or by a description of what is being said; rather our focus is on how language choices and discursive resources in the posts were used to accomplish specific tasks. Our findings are demonstrated by presenting “one or more discourse excerpts, followed by their detailed analysis” (Wood & Kroger, 2000, p. 183) and by “going through the excerpt in detail in order to show how a claim is grounded” (p. 184), in essence reproducing the analysis for the reader. Our findings are warranted not by providing multiple examples, but by reworking the analysis of representative excerpts to show what the language is doing.
FINDINGS All but one of the 106 newcomer posts received a reply. A post that simply shared a link to a blog did not receive a reply, reinforcing previous findings that there are norms that must be followed to receive one (Mudry & Strong, 2012; Stommel & Meijman, 2011). Discursive features prevalent across the response posts included (a) validation
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and empathy through “second stories” (Arminen, 2004), (b) constructing grief through descriptions, and (c) accepting bids for membership through advice giving and invitations to return. We use extracts from the first responses to the newcomer posts described in Varga and Paulus (2014) to illustrate these findings.
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Validation and Empathy Through Second Stories Responses to newcomer posts frequently opened by welcoming the newcomer to the group, referred to as a “club no one wanted to join” and by extending empathy. These expressions of empathy were often followed by or intertwined in “second stories” (Arminen, 2004) whereby the member shared their own loss and grief experiences. Second stories echo the symbolic meaning of the previous story and are often constructed to provide support and establish solidarity between speakers (Arminen, 2004). For example, the response to Dana opened with,“I am so sorry for your loss. All of us here understand the pain and the yearning to be reunited. I lost my spouse going on 3 years ago. Most of us have written the same words you wrote. You have come to the right place.” Like many of the responses, this one opens with an expression of empathy toward the bereaved (“I am so sorry for your loss”), followed by a reassurance that everyone in the online support group (unlike in the face to face world) can relate to the newcomer’s grief experience (“all of us here understand the pain,” “most of us have written the same words you wrote”), no matter how extreme. This functions to construct a common grief experience. The lexical choice “yearning” emphasizes the ongoing nature of the experience. After this, a short second story of their own loss is shared, including who died and when (“my spouse,” “going on 3 years ago”). The response ends by accepting the newcomer’s bid for membership by saying, “You have come to the right place.” The response to Harriett’s initial post opened with a longer second story about the loss of the responder’s husband, Norm: Oh, Harriett, my heart goes out to you. My husband, Norm died in hospital, just days after his surgery and it was totally unexpected, so I know something of what you’re going through. My Norm died 3 months ago and it has only been in the last couple of days that I’ve begun to accept that the noises the house makes when the furnace comes on, etc., isn’t Norm moving around or walking to the kitchen to make a coffee or whatever. Mind you, I still sometimes find it difficult to believe that it happened at all. I find myself looking at a picture of Norm and shaking my head in disbelief that I don’t have the flesh and blood Norm with me.
Similar to the response to Dana, this one opens with an expression of empathy (“my heart goes out to you”). The
response continues with a more detailed second story, including who died (“my husband, Norm”) and echoing the unexpected nature of the death (“it was totally unexpected”), a pattern across the newcomer posts (Varga & Paulus, 2014). This responder, too, constructs a common grief experience with room for variation by saying, “I know something of what you’re going through”—something, but not everything. The response also emphasizes the ongoing nature of the grief—in that it has been 3 months since her loss but it “has only been in the last couple of days” that she is accepting that he is gone, and that it is still “difficult to believe that it happened at all.” This response echoes the uncontrollable emotional and physical states described by the newcomers in their initial posts (Varga & Paulus, 2014), with phrases such as “I find myself looking at a picture … and shaking my head in disbelief”—the action of looking at a picture and shaking her head is what she finds herself doing—it is out of her control. Overall, the responses directly validated the newcomer questions as to whether what they were experiencing was normal (Varga & Paulus, 2014). The details of the loss, unusual circumstances of death, and uncontrollable emotional and physical states shared in the initial newcomer posts are mirrored in these second stories. Responses affirmed that although others outside the grieving community may not understand the grief experience, the members in the online group do understand, as seen in the response to Dana: We all get it. Like my family and some friends, they just do not understand your loss and how it impacts every minute of every day, every dream. No one can walk in your shoes but the folks here come very close to it as we are all walking this horrible path.
In this way, the newcomers’ troubles-telling of how others “just do not understand” is taken up as a legitimate way of entering the group (“we are all walking this horrible path”). Just like in the newcomers’ experiences, the members’ families and friends do not understand, and grief is constructed as something that is both extreme and pervasive (“every minute of every day, every dream”). Grief is a common experience, yet also unique—while “no one can walk in your shoes” (unique), “the folks here come very close to it” (common). Constructing Grief Through Descriptions We noted that across the responses, specific descriptions of grief were provided to the newcomer. As Edwards (1997) has pointed out, “one of the most important features of descriptions is their could-have-been-otherwise quality” (p. 8). That is, each description of grief constructs a particular version of it, in the case of our data a version that validated as “normal” the extreme emotional and physical
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states displayed in the newcomer posts. The response to Dana’s initial post noted that, “Grieving is unique to each person and we live in a culture that does not deal well with grief once a few weeks have passed.” This emphasized the normality of grief extending past what those who are not grieving may consider normal. Sandy’s responder wrote, “It has only been a few months, please do not expect to [sic] much from yourself right now. Dealing with the passing of your loved one is very hard on you emotionally and physically as well.” Thus, emotional and physical distress is included as part of the description of normal grief. The responder to Harriett’s post wrote: “All of us here would say that we can go on … some of us just take longer than others, but we DO go on whether we like it or not.” Grieving is constructed as continuous—it is never over. This stands in direct contrast to newcomer reports of how their grief was described by their offline family and friends—as problematic. We noted a dilemma in the responses across the second stories and the descriptions: That grief is unique to everyone, but at the same time common enough that one’s grief can be said to be “normal.” Some members, such as in the response to Dana’s post, noted the individual and unique nature of grief. Others offered definitions of grief that positioned it as having similar features for everyone, such as a “roller coaster of emotions” or simply “powerful stuff.” These descriptions of grief, often intertwined with advice giving, were used to construct a version of grief. Other responses included, “You may not find anyone here who matches your exact circumstances, but you will find people who have gone through the trauma of losing a person they loved.” This again positions grief as unique, but also universal, therein presenting a dilemma for the bereaved. Membership Acceptance Through Advice Giving and Invitations to Return As has been noted in other studies of online support groups, even when newcomers do not directly ask for advice in their posts, members often included advice in their responses (Morrow, 2006). This was true in this group as well. The response to Linda’s post included the advice that, “If you find yourself depressed for months on end, you might wish to consider seeing a psychiatrist, explain your situation to him/her and request to give anti depressant medication a try.” Here a distinction is made, though, between being “depressed” and experiencing grief. The advice is presented through an if-then construction, which can serve as a script formulation (Edwards, 1997) “if you find yourself depressed … you might wish to consider.” Rather than engage in any kind of intense therapy, the responder encourages Linda to simply “explain your situation and request to give medication a try.” Depression is constructed as a natural by-product of grief that can be reasonably treated with medication.
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The response to Sandy’s post, too, contained advice: Try to eat healthy, get as much rest as you can, and do not let others close to you tell you how or what you should be doing. It helps to get into a grief support group. I go to Hospice meetings every week in 2 different towns, with the same counselor.
The responder’s advice (eating healthy, getting rest, joining a support group) is presented as legitimate through the use of commands and is contrasted with any advice that those outside of the online community might present: “Do not let others close to you tell you how or what you should be doing.” Instead the newcomer should do what the member is doing, which is to find and attend a support group (“I go to Hospice meetings every week in 2 different towns”). The response to Dana’s post, too, encouraged seeking out face to face support as the member had also done “I hope you have sought out a local grief support group. I did and I saw a grief counselor also … it all helps and I urge you to consider it.” Across the responses we saw recommendations to find face-to-face support, such as professional counselors, grief support groups, and spiritual advisors, but also to continue returning to the online group—thus accepting the newcomer bid for membership. The newcomers were nearly always encouraged to return to the group. The responses often started with a salutation and the name of the newcomer (e.g., “Dear Dana”) and often ended with a question for the newcomer to answer, which served to both welcome the newcomer and accept their bid for membership by encouraging them to return. The response to Dana’s post specifically included the phrase, “keep coming back here” as did the response to Sandy, “I would like to welcome you this wonderful place where there is a lot of great people who can help you in this deep dark despair … most of all keep coming back.” The response specifically welcomed the newcomer to the online group, which is described as a “wonderful place” with “a lot of great people” who can provide support even in the most extreme cases, e.g., “deep dark despair.” The response to Harriett’s post also emphasized the extreme nature of grief, “You’re very early into this loathsome experience” and validated her entry into the group, “but you’ve come to the right place.” Harriet’s respondent asked her to provide additional details about her loved one, “Please tell us about your husband and your life together. Sharing our loved ones’ lives and stories always seems to help.” Just as the response to Sandy closed with, “most of all keep coming back”, the request for more stories invited Harriet to return, with the sharing of stories described as a therapeutic activity. DISCUSSION Although face-to-face support group facilitators are often reluctant to facilitate online groups (Lubas & De Leo, 2014), they are often willing to refer clients to them if
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offline ones cannot be found. A greater awareness of what happens in online groups can therefore be of use to counselors contemplating whether or not to refer their clients to them. Across the data, the online support group members accepted the newcomer bids for membership, except in one case when the initial post was simply an advertisement for a blog. Responses typically began by welcoming the newcomer with expressions of empathy and second stories which functioned to validate the newcomers’ extreme experiences of grief and legitimize their bid for membership. Responses also provided descriptions of grief and gave advice, both of which served to construct a certain version of the grief experience. Newcomers were encouraged to return to the community and continue sharing their stories. This pattern illustrates how current members accepted the newcomer bids for group membership, validated their often extreme grief experiences, and co-constructed a version of “normal grief” that may differ from that of the offline world. The use of second stories was prevalent across the data. Second stories can demonstrate understanding of the first story, as well as offer solutions or empowerment in response to problems highlighted in the first story (Arminen, 2004). Second stories can also be used to provide advice without it being articulated as such (Veen et al., 2010), with the stories showing newcomers how to put their experiences into the proper context for the group. Here, we saw the second stories validate the extreme nature of their grief. Giles and Newbold (2013) in their study of an online support group for mental illness argued that it is the social support and construction of “normality” that is the group’s most important function. They noted, too, that second stories function to reassure members that they meet community norms. Although newcomers did not explicitly ask for advice, current members often gave recommendations to the newcomers on how to cope, often by encouraging them to find face-to-face support (Giles & Newbold, 2011). Giving unsolicited advice can serve as another way for current members to accept newcomer bids to join the community (Vayreda & Antaki, 2009). Vayreda and Antaki (2009) illustrated how unsolicited advice introduced newcomers to an online bipolar support group to the very meaning of bipolarity itself. This is similar to how members in the online grief support group provided advice that reinforced the description of grief that was being constructed. Similar to other studies on advice giving, members gave advice based on their personal experiences, constructing grief as a universal experience, while simultaneously reassuring the newcomer that any unique features they may present are not unusual (Morrow, 2006). This is an important function since newcomers in this online grief forum often came to the community seeking validation that their grief was “normal” (Varga & Paulus, 2014). Current community members presented a description of grief based on their personal experiences and validated newcomers’ grief
experiences, no matter how extreme, by affirming the complexity and intensity of the grieving process (Varga & Paulus, 2014). We noted a dilemma whereby grief was constructed as both an experience unique to an individual but also one predictable enough to be able to reassure newcomers that their extreme experiences were “normal.” This finding was similar to Cranwell and Seymour-Smith (2012) who noted in their study of an online support group for those with bariatric surgery that a “lack of appetite” was constructed simultaneously as something to celebrate but also an issue that needed to be addressed. In this online support group members were “actively resisting the dominant cultural narratives that script the ‘proper’ performance of grief in a manner coherent with the prevailing social order” (Neimeyer et al., 2014, p. 496). Our findings raise questions around what constitutes normal, prolonged or complicated grief. The bereaved’s attempt to identify a “new normal” is similar to findings of DeGroot and Carmack’s (2013) study of parental grieving on a blog. Members of this online grief support group worked to normalize and validate the often extreme suffering of newcomers’ grief experiences. Yet, there were no instances of the group “diagnosing” the bereaved member as having symptoms consistent with complicated grief (Lobb et al., 2010). Instead extreme grief was constructed as routine, as something to be expected (similar to studies of self-harm, Smithson et al., 2011a, 2011b; and the eating practices of vegans, Sneijder & te Molder, 2004, 2005, 2009). As evidenced from this study, descriptions of extreme emotional and physical states of pain were validated by the community and, while responders often recommended the newcomers seek face to face support, the “normalcy” of their grief was never questioned. An awareness of the types of responses and support that the bereaved get in online support groups can be useful to counselors. Just as the online community members advised newcomers to seek out face-to-face support, face-to-face counselors can recommend online support groups as places to engage in troubles-telling, share stories, receive advice and co-construct a description of grief that validates their experience. Findings from this study can also assist counselors with helping bereaved individuals and their loved ones better understand normal grief reactions. The extreme emotional and physical states of pain shared online may not always be shared in the offline world. The online world provides bereaved individuals with electronic courage, allowing them to explicitly describe their grief experiences without judgment. Just as the existing members in the online group validate these feelings and symptoms, counselors can help families understand the pain associated with grief as normal and encourage them to support the bereaved through these experiences. Social support in the online world provides a sense of cohesiveness in dealing with bereavement issues (Doveling, 2015) and transferring this support to the offline world would be beneficial for the bereaved.
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Although this study expands our understanding of how members of an online grief support group respond to newcomers, additional research is needed. Because this study was limited to 106 response posts in one forum of one online grief support site, exploring additional support groups, social networking sites, and other arenas could enhance our understanding of how grief is constructed and normalized in online venues. Although each initial post by a newcomer usually resulted in numerous responses from other members, we analyzed only the initial response. Future studies could examine subsequent posts for variations from the pattern set by the initial response, as it is possible that members constructed their responses based on prior responses they had read. Discourse in face-to-face support groups could also be examined. Do newcomers seek validation in these offline environments as well? If so, do bereaved peers validate their feelings? Are similar discursive functions being used as in the online world? How is grief constructed in these settings? A study with faceto-face grief support groups could show how the construction of grief compares to that which we saw in the online environment. Finally, it is also important to understand how grieving individuals make meaning of their experience, particularly through the use of stories (Neimeyer, 2000). Arminen (2004) argued that “experiences are co-constructed through a series of stories” (p. 340) so insight on how stories help construct the meaning of grief would be useful. REFERENCES Arminen, I. (2004). Second stories: The salience of interpersonal communication for mutual help in Alcoholics Anonymous. Journal of Pragmatics, 36, 319–347. doi:10.1016/j.pragma.2003.07.001 Bainbridge, W. S. (2013). Perspectives on virtual veneration. The Information Society: An International Journal, 29, 196–202. doi:10.1080/ 01972243.2013.777312 Boelen, P. A., & Prigerson, H. G. (2012). Commentary on the inclusion of persistent complex bereavement-related disorder in DSM-5. Death Studies, 36, 771–794. doi:10.1080/07481187.2012.706982 Brown, P., & Levinson, S. C. (1987). Politeness: Some universals in language usage. Cambridge, UK: Cambridge University Press. Brubaker, J. R., Hayes, G. R., & Dourish, P. (2013). Beyond the grave: Facebook as a site for the expansion of death and mourning. The Information Society: An International Journal, 29, 152–163. doi:10.1080/ 01972243.2013.777300 Cranwell, J., & Seymour-Smith, S. (2012). Monitoring and normalizing a lack of appetite and weight loss: A discursive analysis of an online support group for bariatric surgery. Appetite, 58, 873–881. DeGroot, J. M. (2014). “For whom the bell tolls”: Emotional rubbernecking in Facebook memorial groups. Death Studies, 38, 79–84. doi:10.1080/07481187.2012.725450 DeGroot, J. M., & Carmack, H. J. (2013). “It may not be pretty, but it’s honest”: Examining parental grief on the callapitter blog. Death Studies, 37, 448–470. doi:10.1080/07481187.2011.649940 Doveling, K. (2015). Emotion regulation in bereavement: Searching for and finding emotional support in social network sites. New Review of Hypermedia and Multimedia 21 (1–2), 106–122. doi:10.1080/ 13614568.2014.983558 Edwards, D. (1997). Discourse and cognition. London, UK: Sage Publications.
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