Content of interaction

Openness of sharing personal lived experience

Definition: discussion around the cancer experience

The group also articulated a broader range of themes, indicating understanding of the cancer experience (3)

Personal stories were salient in as many as 83.6% of stories (n = 51). Participants often talked about their personal hobbies and interests (57.4%, n = 35) and their unique attributes (47.5%, n = 29). (4)

Use of humour

Definition: Humour

The stories were not, however, always serious: humour and jokes played a large part in the stories on the list, and were often stressed by the women as being important aspects of survival. (2)

Sharing loss and emotions

Definition: isolation

Witnessing Hopes, fears, losses

Definition of subtheme: Discussion often focused on participants own fears about living with cancer. Fear for self vs fear for family. Fears about immediate family, fear of cancer coming back. Honesty of exchange. Uncertainty around if the cancer is still their or present.

while all of them expressed emotional concerns related to their cancer disease. (1)

They talked about life, hope, and fear in the context of their personal narratives of the cancer experience: “custody of my grandchild who needed the normal, healthy parent in me,” “watching a plant grow under my nurturing care,” “living what is today,” “fear of suffering, not of dying,” and “someone bearing witness to your life.” (3)

The personal stories told on the internet had several central and recurrent themes, including breast surgery, sexuality, physical and mental exhaustion, loneliness and fear. (2)

One female participant treated for gynecological cancer said: One year ago they found cancer in my uterus. It only takes a slight amount of pain some―where before I think “oh no” and begin to worry that I might still have cancer. I hope to take something away with me [from the course] to tackle this. It has been a hard journey and it [the cancer] is always in the back of my mind. (1)

Other participants confirmed that with any kind of pain or unfamiliar symptom, uncertainty, and concern followed―the fear that the cancer disease will return. Already during the introduction, it was clear that issues of fear and concern were mentioned as pertinent topics for the participants. (1)

This opening dialogue became the starting point for discussing emotional concerns and worries, being considerate of others and the importance of exploring and clarifying expectations between people who care about one another. (1)

The course can be seen as a storied sequence participants contributed thoughts about how they felt alone with their concerns and fears. One of these fears and concerns being the thought of losing their significant other. One female participant said: I worry, because, how will he manage when I am not there. I think if I die, he will die too. (1)

In different ways, they spoke about the fear that cancer provokes and the concerns that they have for each other and their children. In particular, they talked about the fear of the cancer returning or the fear that the cancer had not been fully removed. Several of them commented that: “We were never informed if it [the cancer] can return, nor about the late-effects.” (1)

. Only 36.1% (n = 22) of the stories related to cancer or cancer survivors with topics such as treatment (surgery, chemotherapy, radiation or other issues, such as nutrition, exercise, alternative medicine [40.9%, n = 9]), their diagnosis (18.2%, n = 4), their doctors (22.7%, n = 5), pain/suffering (22.7%, n = 5), and their lingering fears and concerns (18.2%, n = 4). Although there were not many cancer-related stories, there were a number of health-related topics, such as narratives on health management practices (29.5%, n = 18) or their benefits (14.8%, n = 9). Video sharing via internet (4)

Among the video stories posted on the site, positive stereotypes included mentally strong (8.25%, n = 5), brave (3.3%, n = 2), able to cope (6.6%, n = 4), new insights (8.2%, n = 5), and new appreciation for life, friends, and family (8.2%, n = 5). ? contrast to weakness a reliance on character(4)

Outcomes from groups

Increased quality of life

Definition: Quality of life improves.

The women stated in interviews and in their postings to each other that participation on the mailing list had greatly improved the quality of their life with breast cancer. (2)

Increased knowledge

Definition: increased knowledge

Interviews with participants and observation of the daily storytelling indicated that participation promoted strong awareness of breast cancer and its implications. (2)

Psychologically healing and needed shared experience

Definition: Loneliness is a central consideration coming into the intervention. Need for real exchanges with someone else. How is the isolation created, how is this different from loneliness? ? the interactions that follow a cancer diagnosis may influence

Their stories acknowledged that the cancer diagnosis requires the creation of a new map for their lives; that relationships with others are irretrievably altered; that bearing witness to the cancer story, despite its telling and retelling, is a healing gift (3)

After her first visit to the chat room, one woman wrote: ‘Time passed so quickly last night and I was on-line 1 hour and 10 minutes. […] If a laugh is good medicine then the chat was something that can heal, maybe not our breast cancer but our souls.” (2)

It is the loneliness I find worst, and that is why it is good the list has started, so we have somebody to share it all with when we need it.” (2)

In response, another woman wrote: “I see that xx writes about loneliness. I recognize my own situation very well in that, and I feel it even more strongly this time}the absence of people. I miss some of those who would normally get in touch with me. It hurts so badly. Even close friends have disappointed me, they stay away to some extent and I do not know how to tackle this”. We found that the community of the mailing list counteracted the experience of social isolation and incorporated the women into a new social world. (2)

While another female participant said: My husband is very considerate and tries protecting me, which is a great help. I think he has some gloomy thoughts about my condition, but he doesn’t share them with me, and I don’t ask. (1)

Social connection and as a well reported item (10)

A subject brought up persistently in postings on the mailing list and in our interviews with the women was the inescapable experience of isolation (2)

Some women described a diagnosis of breast cancer as “being moved to” or “entering” another side of life. They became isolated from their loved ones and from the social world they used to be a part of. The isolation experienced by these women was complex, at times being was experienced as overwhelming. It appeared to be persistent and was a keynote to the stories. “Nobody calls, nobody writes, do they think this is contagious? I am very disappointed}should I call? I can hardly be bothered now”, one woman reported resignedly. Another woman wrote: ‘[…] (2)

Shared understanding of coping―shared strategies

Definition: One outcome for the storytelling is the provision of a shared understanding of illness. The groups provide a natural fit to the need for human interaction. Responses referring to being heard, understanding how to live with the illness. Groups provide a base for knowledge exchange and coping strategies. This knowledge exchange may be unique to the group and may not exist from other sources. ―non judgement

Negative case: Benefit of group may depend on the relative condition of the individual

They (storytelling group) were better acquainted with, or had more insight into, not coping compared to the control group (3)

Another motive for turning to the mailing list was to find survivor stories and women to share the experience of breast cancer. Finding personal stories from women who had survived and found ways to live with breast cancer was described as a strong encouragement. (2)

The mailing list provided a space in which experiences could be voiced and shared through storytelling. (2)

The women used each other’s experiences to learn how to live with illness. One example was the difficult subject of sexuality after breast cancer. In response to a posting on the subject, one woman wrote: ‘It is good that you write about this. So far I thought that I was the only one on the list that encountered problems of that kind. (2)

I could write tons of mails on that subject. I love my husband, but I happened to suggest that we got a divorce}that seemed easier than getting our sex life to work again […]”. Several women encountered both physical and mental difficulties in engaging in the sexual act, and they learned from each other how to confront such problems. Recognition that sex was not what it used to be was central, but they also gave each other practical advice on how to deal with physical discomfort through exercise, various aids and pharmaceutical products. (2)

assistance with a perception of coping and findings other ways to cope (10)

Sixty-seven percent of the respondents (26/39) noticed that they were better able to reach out to others for help and support (10)

The group…described more fully what not coping looked like. (3)

Two women, however, had difficulty determining how to proceed; one felt stuck in a victim role and could not see past that (although she held out hope for the future), and another reported that her skin burned from radiation and that she had feelings of depression. (3)

Although others felt safe in the group, one participant shared some private information despite considering herself “not the type of person to share personal feelings.” she reported that this information was later revisited in a joking manner within the group. “i didn’t feel i had the freedom to say that i didn’t appreciate that … but it showed me that you have to still be very careful.” The participant also expressed conflicting thoughts about the way the storytelling group was run. (3)

Most of the participants said that they initially found it difficult and intimidating to talk about their illness experiences in front of others (1)

Introduction of hope

Definition: benefit of hope

Using the internet to find information or support gives women the possibility to act when they had thought that impossible. (2)

introduction of hope from hearing from others, (10)

Increase in activities

Reaffirming a sense of self and self identity

Sense of control and empowerment and knowledge

Definition benefit of empowerment:

The women described how the breast cancer mailing list worked to empower them, by fostering a sense of control that linked them with resources and promoted well-being. “I feel that via the internet I regained power over my body, because I know everything about my diagnosis, my possibilities and my risk,” one woman reported. (2)

The women not only gave each other information about breast cancer but also encouraged each other to formulate expectations and questions for their personal consultations with physicians. (2)

Impact on emotional well being

Definition: relatedness and emotional wellbeing.

You turn to the net to find women who have the same age, diagnosis and treatment as yourself} if they are alive it is good and gives encouragement} if they are dead you get sad’, one woman explained. (2)

Postings on the list sometimes contained remarks that would elicit laughter, bringing relief to both the writer and the reader (2)

Among other things, they emphasized that what they learned from the “All these considerations” workshop was an especially good way for them to address and alleviate some of the fear and concerns, which were troubling them. As one female patient expressed it: There I was with “The Lump” inside me and then I got rid of it. Her husband added: I really got something out of the rehab-course, because all the nervousness I have had, has been such a burden and it now is much less. (1)

Outcome learning about others feelings and experience was positive, feeling supported by the group and better about oneself, being able to share feelings and concerns. (10)

Attention to individual patient suffering was provided by exploration of the stories and not the clinical stories of the disease process (Emblen & Pesut, 2001). As the group worked together to understand their suffering, one woman was “faced with the fact that i might live, then what?” despite many family members dying of the disease. (3)

Social well being

Definition: benefit on social well-being

Turning to the internet broke down the social isolation created by the experience of breast cancer. (2)

Receiving benefit from sharing with others who have cancer (10)

Forty-six percent (18/39) reported improved family relationships and 44% (17/39) noted better work relationships. Thirty-three percent (13/39) reported better communication with a spouse/ partner. (10)

Legitimise experiences; sharing and being accepted and having unity in experiences

Definition: engagement of participants with others in the group

The storytelling group believed that they could share their feelings and feel accepted and secure, despite low energy levels. (3)

The medical narrative, chosen initially by both groups in this project as a way for members to tell their stories in an often-rehearsed, socially sanctioned format, cannot fully express the illness experience. The medical narrative, the short-hand technical language universally used by healthcare providers, furnishes an efficient way for patients to communicate to others about cancer. (3)

She talked about her excited anticipation and preparations for the trip; but when the plane landed, she was in Holland. She suffered: she was lost, cold, and unable to communicate with others but she did the best she could on the unanticipated journey. Others entered into her metaphor for suffering, saying, “it’s Holland, and i don’t like tulips!” “i’m stuck and i can’t read the map,” and “i’d rather be in italy with my friends!” They told stories about the loss of familiar, beloved things; shared their sense of vulnerability; and expressed resentment at lost companionship. (3)

Shared laughter also establishes a shared social world (2)

Strong bonds formed between the women who shared stories, surfacing through humour and powerful metaphors of kinship and through expressions of recognition and intimacy. (2)

Passing on stories about support and care was seen not only as reaching out to others but also as a way of dealing with one’s own experience and making it meaningful, leading to maintenance of self-esteem. (2)

The participants listened attentively, several nodded in response to the idea that fear could be seen as a little “Shadow-man,” as something they understood and made sense to them. One participant said: “Yes, but the fear is there,” and another participant added: “Yes, he comes out [the fear] especially before check-up visits [at the hospital].” Earl then suggested that they could try to take control of their fear; for instance, they could decide to talk to their “Shadow-man” 2 days before check-up visit to get him out from behind the door and into the open…. In the above example, a “Shadow-man” can be seen as a metaphor that provides the participants with an alternative tool to openly express and talk about the emotional burdens they experience. (1)

The Lump” is a short story about a boy named Johnny, who lives alone with his father. One day Johnny’s best friend Jack calls him a “stupid pig!” Johnny does not know how to react; his feelings are hurt, he is very unhappy and his pain feels like a hard―round―heavy―Lump. Johnny cannot get rid of the Lump; he brings it home and goes to his room. From then on, whenever Johnny is unhappy or hurt, he feels “the Lump” growing bigger…Afterward one participant said: “Wow, this gives me goose bumps, it relates so much to me.” Another said: “Yes, it was really good” and others joined in, saying: “this was very thought-provoking.” (1)

Enhanced interactions, activities or accomplishments -


That realization changed her suffering and she “started dancing again. i gave it up for three years!” (3)


Allows a space for emotions to be expressed

thankful that she had found a place to openly discuss her fears about her cancer diagnosis; she was not allowed to do so at home because her husband strictly believed in positive thinking (3)

She also was instructed to avoid gatekeeping that could shut off stories as they began to surface. she countered this by allowing members to each “have their night” if they were severely stressed, emphasizing that the same courtesy would be extended to others as needed (3)

One person monopolizes the group … whether that person should have been controlled or whether it was good because the person knew they’d be helped. I still haven’t quite figured that out because I saw the person change considerably from when they first started the group (3)

Also indicated was a beginning acceptance by the woman who provided the outlier statements that, when the “monopolizer” worked to heal herself in the context of the group, she “contributed to the healing of the whole” (3)

We often found that humour was used in mailing list conversations to create distance from an event or situation. Seeking advice on “Shampoo for bald-headed people” or joking about the forgetfulness of “chemo brains” and about ill-fitting breast prostheses are examples of jokes shared on the mailing list with sympathetic understanding (2)

“What you experience on the list is the opportunity to give, to give love to each other”, one woman explained in an interview. The social nature of the breast cancer mailing list was expressed as genuine concern for others. (2)

As to motivation, 80% of the children/adolescents were animated and 60% showed curiosity. The animation was evidenced through smiles and excitement when retelling the story, in the manipulation of the materials and the interaction with the people present. (5)

Of the 20 children/adolescents participating in the study, nine (45%) changed to a happier emotion, 10 (50%) participants remained in the same category of emotion, all of whom were already in a positive emotional state or very cheerful) and only one changed to a sadder emotion (5%) after the Story Box. The participant who remained in a sad emotional state did not interact with other people and was not motivated during the practice. However, the participant who decreased his score, despite interacting with other people and being motivated, changed his emotional state from very cheerful to cheerful (from 4 to 3). (5)

Analyzing the results before and after storytelling, it was possible to see that children and adolescents significantly modified their emotional state, with p value equal to 0.0111, as can be seen in Table 1 (5)

that the use of art as a therapeutic resource assists in the development of free expression and enables the understanding and interpretation of children’s experiences and adolescents with cancer, improving their quality of life. (5)

Understanding of coping behaviours increases

Attention to individual patient suffering was provided by exploration of the stories and not the clinical stories of the disease process (Emblen & Pesut, 2001). As the group worked together to understand their suffering, one woman was “faced with the fact that i might live, then what?” despite many family members dying of the disease. That realization changed her suffering and she “started dancing again. i gave it up for three years!” (3)

Lack of judgement given on any sharing

She avoided probing discussions on coping strategies but worked to get in touch with participants through an interpersonal bridge created, in part, by her own self-disclosure (3)

Others feel really heard

Knowing someone else is experience what they are going through― validation of suffering

Participants telling and retelling their stories to one another as they worked to make meaning from the cancer experience (3)

The medical narrative, chosen initially by both groups in this project as a way for members to tell their stories in an often-rehearsed, socially sanctioned format, cannot fully express the illness experience. The medical narrative, the short-hand technical language universally used by healthcare providers, furnishes an efficient way for patients to communicate to others about cancer. (3)

Some expected that it was going to be like “going to camp” and looked forward to meeting others that were in a similar situation with similar circumstances (1).

Overwhelmingly, the most favorable aspect of the group was the sharing and the stories as noted by over half the participants (25 of 39). A sample quote was “Each group member listen (ed) to me and the one thing I truly needed was to be able to talk & know some one cared. (10)

Retelling a story to reframe its content = Decrease blame on themselves

Shared social experience

Frequent retelling may have occurred because stories allow people to forget and reinvent certain aspects of their pasts, making them more acceptable in current circumstances (3)

The stories often need to be re-explored for meaning in light of what participants now know. Revised versions then are used to validate identities and suffering, for both the participant and the group. Such validation was appreciated by one woman who said, “The group helped me see that the things that were happening weren’t because of a failure on my part or something i had done wrong, or not done.” (3)

Shared laughter also establishes a shared social world, and on several occasions women on the mailing list said that they enjoyed talking to each other “[...] because we can laugh at the same things”. (2)

No perceived need to fix problems (similar to lack of judgement?)

The nurse facilitator was able to avoid judging, analyzing, and extracting data from the stories and seemed to accept them as whole and true to the teller (3)

group members discussed bearing witness to each other’s stories with the guidance of the nurse facilitator, recognizing that it was not about fixing the issue or even having something to say, but just being with people (3)

Reaffirming a sense of self and self identity

Those strategies were aimed at producing “virtually shared experiences” (Errante, p. 24) that allowed group members to vicariously enter the storytellers’ realities and work toward shared meaning (Watson, 2003). (3)

Use of humour

Trust and Unity in sharing and being with people

group members discussed bearing witness to each other’s stories with the guidance of the nurse facilitator, recognizing that it was not about fixing the issue or even having something to say, but just being with people… acknowledging who they were, and reminding them that their disease did not define or tarnish them. (3)

Many stressed that the absence of physical contact on the internet made it easier to start discussions on difficult and painful subjects, whereas the intimacy and trust formed on-line created the basis for discussions when the women met face-to-face. It was not the anonymity of the internet but rather the lack of physical contact at the time of writing that proved helpful to the women. (2)

Getting past stereotypes of others ? towards what their lives are like (content of interaction)

One male participant said: There is a difference between how we think others are doing and how they are actually doing. Earl responded: Yes, sometimes we think we know how others are doing, and then we can get surprised. It can be really difficult to know, if we don’t talk about it. (1)

On the other hand, there were some health-related words, such as “healthy,” “tired,” or “sporty.” About half of the participants listed health-related words in their description of themselves; 30.8% (n = 4) listed one word and 15.4% (n = 2) listed two.(4)

Silence facilitated interaction, enabled sharing, some were unhappy with the silence

Silences in the group were documented as natural and comfortable. group members appeared to reflect on or con template stories just disclosed. (3)

Factors which influence benefit

Space where openness is possible―prevented in other interactions

The facilitator suspended her usual role as an authority figure to become vulnerable and acknowledge her own humanity…“it was like my own personal therapy session, only better because you shared your experience, too.” (3)

. First of all, we found that participants avoided cancer-related topics in general. Only 19.7% of video postings (n = 12) had a direct reference to cancer. Type of communication ? video posting prevented interaciton (4)

Having others to talk to

Showed the activities performed for team members or other people and talked about their daily lives. Interaction with the couple of undergraduates occurred for 90% of the children/adolescents and the interaction with other children/adolescents, for only 30% of the participants. (5)

Among the participants who improved their scores, 55% interacted with the couple of undergraduates and/or with other children and adolescents and were motivated (showing excitement and curiosity). (5)

For example, many listed words, such as “talkative”/“loud” (as opposed to “quiet”) or “fun to hang out with”/“fun to be around” (as opposed to “isolated”). Moreover, one of the most frequently listed identity words among all the words describing self was “smart” (as opposed to “dumb”). In total, 77% of participants listed at least one of these antonyms to describe themselves. (4)

Domination of one member of the group

Being able to express suffering or engage

Women with a new diagnosis entered the list to seek the experience and advice of women who had already lived through surgery and various treatments, whereas women who had lived some years with breast cancer gratefully took the opportunity of telling their stories. (2)

100% of the children/adolescents maintained their attention in history, a fact observed through the attentive gaze in the staging and through the changes in the facial expression, coherent with the unfolding of the story (5)

A significant positive relationship between negative stereotypes expressed in the “Who Am I” test and depression was observed (for frequency, r = 0.63, p < 0.01; for percentage, r = 0.51, p < 0.05) (4)

Other stakeholders /Facilitator sharing personal information― allowed or gave permission to open up

In terms of acceptance of a cancer survivor identity, just more than 80% of stories indicated their acceptance of a cancer survivor identity (n = 18). (4)

Negative experience― not wanting to share opening

Being able to confront fear