Parents’ Narratives in an Online PHPV Forum: Toward a Typology of Caregiver Illness Narratives

Extant Studies Applying Narrative as Method

Fisher’s (1984) narrative paradigm has been employed by several health communication scholars. Vanderford and Smith (1996) base their study of women’s narratives of silicone breast implants on Fisher’s definition of narrative, noting that narratives “provide us with clues about how individuals create meaning in the midst of confusion” and “provide the basis for decision making” (p. 23). Ellingson and Buzzanell (1999) use narrative as a way to give voice to women experiencing breast cancer treatment. Seeking better ways to achieve “patient-centered” interactions, Ellingson and Buzzanell use the narratives gathered from breast cancer patients as a way to define satisfaction with the physician–patient relationship and to understand how physicians can begin to satisfy patients’ needs.

One benefit of narrative, as demonstrated by Vanderford et al. (1997), is the unique ability of narrative to recognize not just the facts of a patient’s experience but the meaning of the experience. Instead of being “a flawed window on objective knowledge” (Vanderford et al., 1997, p. 17), narrative reveals how patients view their experiences and what they have learned from them.

Narratives of Diagnosis

One of the most common events depicted in the daily posts is the PHPV diagnosis. In most cases, first-time posters include a description of the child’s diagnosis. In an attempt to provide additional support to new members, returning group members often reply with their own diagnosis stories. In the initial messages, new members briefly introduce themselves and move quickly into the reason for posting. Common features of these messages include the child’s age and medical information about the specific diagnosis received. (PHPV varies a great deal among children, so it is necessary to clarify the type and severity of the disorder.) These messages follow a basic plot line, beginning with a description of the diagnosis and concluding with questions for experienced parents. For instance, one couple writes,

We have a four-week-old daughter who has been diagnosed with PHPV (right eye). We are very confused as to the decision we should make regarding surgery (whether or not to have it). We have heard that the surgery is not the difficult part, but that the years of post-op therapy (i.e., patching) is – especially with unknown sight improvement. Can anyone please Email [sic] us back to let us know their experiences with PHPV surgery, patching, sight improvement, etc.

Members’ responses to diagnosis messages often include a great deal more information, along with encouraging statements and messages of empathy for the new parents. After opening with a message of congratulations on the child’s birth, or a note of welcome to the group, respondents then tell stories of the impact of PHPV. The group members reveal detailed descriptions of life with PHPV, their reactions to the initial diagnosis, and when deemed appropriate, advice for the new members. In one such post, Katie ¹ responds to a new mother’s concerns,

First, congrats on the birth of your sweet daughter. Carrie is such a cute name! I’m sorry you and she are having to go through this. I’m not sure if I can help at all, because my daughter wasn’t diagnosed until 5 months old and there was nothing we could do for her vision … She has had surgeries for glaucoma, which has been under control since she was one, and a couple of other surgeries. She wears a scleral shell … I totally know how you feel about being worried about the social issues and school and everything. I worried about it too … She does sometimes ask why she has to have a blind eye. It breaks my heart. But it seems that we talk about it and it’s out of her system for a while … My prayers are with you in this tough time. I have four daughters all under the age of eight. Kara is my second. I realize it must be a lot tougher to have to deal with this with your first child. Everything is so new and you have to deal with this all at once. It can be daunting, but you will be fine, and so will Carrie. Good luck and welcome.

Another common theme in initial messages of response is the guilt many members experience after the PHPY diagnosis. In one strand of messages entitled “Discovery of PHPV,” one mother tells the brief story of her child’s diagnosis and then asks for information regarding whether the doctor or parents initially discovered the problem. The responses vary, but several group members attempt to reduce the parent’s guilt. One mother replies, “You can’t beat yourself up over it. Just take it in stride. I think some things are just meant to be. It doesn’t do much good to keep thinking what if?” Another parent, after describing frustrating experiences with a pediatric ophthalmologist (PO) states,

So you see, I have at least as many weeks to feel guilty about as you do … but please don’t. Just tell yourself you were, are and will be always doing the best thing for Carol that she is lucky to have you, and you are both lucky that you did notice the cataract and did ask the doctor.

Still another parent recounts her child’s PHPV story, pointing out frustrations with the medical field and the uncertainty of discovering this disorder. Following the patterns of other messages, this woman states “sometimes things just are and we do more harm than good by not letting go and just doing what needs to be done now!” New parents receive more than just medical information when posting questions on the message boards. They are inundated with messages of understanding and support. Because of the wealth of experience among group members, their responses include not only information for the medical wellbeing of the children but also for the emotional well-being of the parents. Experienced parents realize the importance of focusing on the children. By attempting to empathize with new group members, group veterans allow new members to shift the focus from their own guilt to the present and future medical needs of their children.

Also present in the responses to these messages are statements of universality among group members. Participants acknowledge similarities in their collective experiences to remind others that they are not alone in their struggles with PHPV. “Your story goes hand-in-hand with our own”; “I too was the first to notice the cataract”; “I know that feeling”; and “it sounds like our situations are very much the same” illustrate this point. Embedded within these lines is Fisher’s (1984) construct of narrative fidelity. These parents are commenting on the similarities across diagnosis narratives. Messages appearing on the website justify new members’ feelings of fear and uncertainty by allowing them to see that they have not been the only ones to experience these feelings; the messages also provide hope by allowing new members to see examples of parents who are on the other side of the diagnosis. As one member says to April, a frequently posting veteran member, “your experience for so many years is an encouragement to those of us who are closer to the beginning than the end.” Those just beginning their experience with PHPV find comfort in stories of others’ who have survived the initial period of diagnosis.

Narratives of Treatment Options

After the initial narratives of diagnosis, narratives of treatment (or daily life with PHPV) emerge. These narratives often appear in response to medical questions by other parents—for example, when one member says “I have a problem where my daughter’s lens seems to be spending more time offset on her eye than correct in the past few weeks (not over the pupil).” This initial post is brief, but members’ responses are more detailed, following a more coherent plot line and traditional narrative pattern. In response to the question about the offset shell, one mother responds,

When Tracy got her first lens, I was constantly moving it back over her pupil. It simply didn’t fit right. After we got a good fit, it sits nicely over her pupil and doesn’t pop out all the time like the other one did. They can outgrow their lenses or the shape of the eye could change. This is especially true if glaucoma becomes a problem. Since the increased pressure in the eye causes the eye to “grow,” the lens might not fit anymore.

In one response to a mother questioning the adjustment of children to PHPV, Emily says,

He is doing much better with the patch than he used to. He used to cry the whole time it was on … or just fall asleep. Now he plays and laughs and reaches for things, (including white KIX cereal off of his white highchair tray!), he watches videos and crawls all around the house. Life has become pretty normal. There are times when I still feel sad and worry about the future, I don’t think that will ever change. But I also worry about my 4 and 6 year old kids and their futures too. I guess that is just what moms do.

Stories of treatment, especially from experienced parents, often contain similar elements. Supportive group members counteract elements of frustration and guilt with stories of success. The person posting an initial message or question is confused, uncertain, or upset; however, responses to these posts are overwhelmingly positive and supportive. Stories of success emerge; if success is not possible, members offer messages of acceptance and understanding. Whether to treat PHPV at all is a choice for parents. Unlike some other illnesses, choosing not to treat this disorder may or may not affect the outcome of vision. Parents must decide whether to follow through with treatments that have some chance at increased vision or to not treat the disorder and continue life without patches, shells, or contacts. Being a member of this online community allows new parents to explore available options and receive invaluable advice from those who are currently going through the reality of daily life with PHPV treatments.

Narratives of Parenting

Along with narratives specifically addressing PHPV, general stories about parenting also appear throughout the support group messages. Although members initially come together because of PHPV, general stories of frustration and joy as parents are also present in messages. Ray, responding to a mother’s guilt over skipping the use of a patch for several days, states,

The image of you playing in the snow with your son almost brought tears to my eyes. THAT IS JUST AS IMPORTANT. Boy do I miss those days when mine were small … Believe me when I say that the “age of wonder” as I like to call it doesn’t last all that long. Pretty soon they are 5 and they know EVERYTHING.

An additional narrative of parenting comes from April. Unlike Ray’s message of hope and joy, this message shares some of the more difficult aspects of parenting.

Amy is headlong into adolescence, despite not turning 10 until next month. She is very conscious of her looks, her peers, etc. More now than ever before. (She is also—at an alarming rate—finding anything I say to, by definition, be the stupidest thing ever uttered in the history of the PLANET!!) After a long talk with her teacher this morning, I have discovered there is an extremely nasty clique of girls in her fourth grade class. Seems they are being very vindictive … The good news is, Amy is NOT a part of the clique. The bad news is, as a result, Amy is one of the “victims” of the clique.

Comparison to Other Narrative Research

Of Frank’s (1995) restitution, chaos, and quest narratives, no single type of narrative is predominant among the PHPV stories. This is not altogether surprising; as Frank notes about most illness narratives, many of these parents’ narratives incorporate more than one narrative type. Although narratives do not obviously reflect stories of restitution, PHPV stories do contain some of the elements of restitution narratives. Some parents seek to improve vision for their children with corrective lenses. When 20/20 vision is a remote possibility for a child, a parent might justify the treatments and lack of normalcy for a short time in the hope of restored vision. For the majority of parents who have been told by their POs that 20/20 vision is impossible, restitution comes less in the form of vision and more in the form of a more traditional conception of “normal.”

Occasionally, members’ narratives reflect elements of the chaos narrative. In early posts, parents are at a loss to explain any feelings except confusion and shock. Feelings of suffering are not clearly explained until after later reflection. For this reason, initial diagnosis narratives include little detail or explanation. More traditional narrative elements emerge more clearly in replies from parents who have had more time to reflect on their own children’s diagnoses. Characters and plot lines appear as members reflect on the chaos they experienced upon diagnosis and use their experiences as sources of support for others. According to Frank (1995), the chaos narrative is “an anti-narrative of time without sequence, telling without mediation, and speaking about oneself without being fully able to reflect on oneself” (p. 98). Parents who respond to these diagnosis messages have moved past the chaos in their own lives and are now able to reflect upon those experiences.

Many narratives that emerge from the PHPV support group most clearly reflect Frank’s (1995) quest narrative. Members who have had more time to process their child’s PHPV describe the journey of PHPV and some of the lessons they (and their children) have learned along the way. Some of these lessons are to cherish every moment, to not take for granted their children’s accomplishments, and to appreciate how PHPV has made their children more tolerant of others’ differences. However, not all members associate with the quest narrative. Some members choose not to look at PHPV as a learning tool or as a journey with lessons to be learned along the way.

The fundamental difference between the narratives on the PHPV support group website and Frank’s (1995) work is the storyteller. When discussing the quest narrative, Frank says, “the quest narrative affords the ill person a voice as teller of her own story, because only in quest stories does the teller have a story to tell” (p. 115). In the case of the PHPV support group, the narrator is typically not the person experiencing the physical consequences of illness. This makes placing support group members’ narratives of PHPV difficult to place cleanly into any of Frank’s categories, especially the restitution narrative.

In fact, when messages appear from group members who have PHPV, they most frequently detail how little an effect PHPV has had on the narrators’ lives and how “normal” their lives have been. Adults or older children with PHPV commonly discuss what they have done as opposed to what they have not done or can not do. Parents of children with PHPV tend to take on the characteristics of illness narrators, even when they are in good health. We propose that these stories might best be described as witness narratives, taking on many of the characteristics of traditional illness narratives—except for the actual experience of illness. A distinction appears with parents of children with PHPV. Through telling someone else’s story, members develop their own illness narrative—one that is similar to, but distinct from, the patient’s narrative.

Group members might feel the need to tell their children’s illness narratives because their children are too young to articulate their experiences sufficiently. Parents of young children have the agency to frame children’s narratives through their own telling and interpretation. They also, through learning from the narratives of older children and adults with PHPV, can see how their children may frame the illness as they grow and come to understand their experiences over time.

Narratives of parents on the PHPV support group website share many attributes of other illness narratives. First, the stories validate Fisher’s (1984) notions of narrative probability and narrative fidelity. Members tell stories that contain many of the same narrative elements, reflecting participants’ awareness of “what constitutes a coherent story” (Fisher, 1984, p. 8). Characters, plot, and sequence are similarly explained in members’ narratives, allowing for the stories to be told in a manner that feels familiar to participants. Narrative fidelity, which allows members to integrate others’ narratives into their experiences, also appears to be a prominent feature of the support group narratives. Frequently, group members compare their respective situations and note similarities across their respective experiences. The ability to relate to other members’ narratives appears to be an important benefit of the PHPV support group.

Initial posts to the PHPV support group often lack many coherent narrative features. New parents have yet to identify with the diagnosis; the witness narratives have yet to take shape. It is in the responses to these messages, coming from parents who have had more time to process the meaning of the disorder, that clear narrative elements appear and the stories begin to take shape. As Charmaz (1999) states, “The storyteller now has some distance from these events. That distance gives a new perspective on them and, by extension, on self” (p. 371). As the narrative of PHPV progresses, so do members’ identities. What was once regarded foreign or strange develops into a sense of normalcy and identification with the disorder.