Comments by AS
Evans et al.
The patterns were Finding a soft Place to Fall, in which the individual finds meaning in life while reawakening compassion and caring on the spiritual journey; understanding the cancer Experience, in which the individual understands and transforms suffering, deepening understanding and acceptance of the life cycle and death; and Figuring Out How (if) to get Through it: coping and not coping, in which the individual heals relationships with self and others (see Table 1).
Although the storytelling group was comprised of only three participants who completed the 12-week session (com-pared to four participants in the control group), the storytellying group produced a wider variety of themes relating to Watson’s (2002) tasks under the Finding a soft Place to Fall and understanding the cancer Experience patterns. Figuring Out How (if) to get Through it was subdivided into coping and not coping themes. Although both groups could describe coping using internal mechanisms (i.e., coping strategies focused on intrapersonal resources) and external mechanisms (i.e., coping strategies focused on outside resources), not coping themes displayed some differences. For example, when asked to describe what not coping looks like, the storytelling group listed a wider variety of internal mechanisms that were characteristic of failure to cope than did the control group. The only external mechanism indicative of not coping was identified by the control group: “running to the doctor if you feel something different and you think it might be cancer again.” That finding may indicate increased insight in the storytelling group as to the differences between effective and ineffective coping (see Table 2).
The storytelling group believed that they could share their feelings and feel accepted and secure, despite low energy levels. The group also articulated a broader range of themes, indicating understanding of the cancer experience, and described more fully what not coping looked like. That may indicate that they were better acquainted with, or had more insight into, not coping compared to the control group. The control group articulated the only feelings of uncertainty about expectations of the group experience; although they were glad to blend into the crowd, they felt they could be truthful and still be accepted and supported.
Finding a Soft Place to Fall
Storytelling group: The tool kit required self-disclosure by the nurse facilitator and sharing personal information with participants through stories as a means of role-modeling trust. In terms of Watson’s (2003) framework, the facilitator suspended her usual role as an authority figure to become vulnerable and acknowledge her own humanity. such self-disclosure on the part of the nurse facilitator helped one participant feel less vulnerable and more understood, rather than analyzed. “it was like my own personal therapy session, only better because you shared your experience, too.” Another was 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.
The facilitator was instructed to allow stories to come forth as group members chose to tell them, instead of pursuing the stories she wanted them to tell. She was cautioned that revisiting past experiences could evoke pain and that making private memories public may not be easy. Based on the interviews and questionnaires, the nurse facilitator was able to let participants “choose what they wished to remember and tell … and participate in negotiating the context of remembering” (Errante, 2000, p. 19). 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.
Those strategies were reflected in two outliers defined by miles and Huberman (1994) as exceptions to the rest of the qualitative data. Such exceptions alert the researcher to guard against bias and help to refine a construct or test generalities that seem to emerge from the data. 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.
Where 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.
The evidence underscores the importance of creating a soft Place to Fall and possible need for additional facilitator training and participant teaching. The participants’ conflicting thoughts, however, acknowledged the deliberate lack of gatekeeping and questioned whether it was helpful to other group members. The statements of exception were useful during analysis because they provided evidence that the nurse facilitator had avoided gatekeeping as instructed, as well as evidence of a possible therapeutic outcome for the participant undergoing change. 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” (Watson, 2003, p. 201).
Silences in the group were documented as natural and comfortable. Group members appeared to reflect on or con template stories just disclosed. This is typical of transpersonal caring activities (Watson, 2003).
Control group: self-disclosure by the leader is somewhat unusual in traditional group process when the leader usually is focused on keeping the group on track with the agenda, gatekeeping to prevent monopolizing of the session by one person, or analyzing and probing coping strategies. The social worker facilitator, however, unexpectedly used self-disclosure to encourage group members to reveal personal information, paralleling the storytelling group facilitator’s technique.
Control group activities emphasized education with a guest speaker and distribution of printed materials. Debriefing questionnaires showed that participants continued to look strongly to the facilitator for guidance, despite her efforts to shift the leadership to group members. Silences occurred on several occasions and were described as peaceful but uncomfortable. However, participants expressed their appreciation for the caring they found in the group and consistently treated one of the quieter women with affection, reflecting that they experienced her quietness as “patience and strength.”
Understanding the Cancer Experience
Storytelling group: 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, as instructed (Watson, 2003). 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 (Errante, 2000; Watson, 2003). 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).
To suspend role and status (Watson, 2003), the nurse facilitator initially informed the group that she considered them to be the experts on the cancer journey. Subsequently, she was treated more like a group member than as a leader, with participants telling and retelling their stories to one another as they worked to make meaning from the cancer 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 (Errante, 2000). The stories often need to be reexplored 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.”
Other evidence of implementation of the storytelling tool kit was noted in participants’ visible and frequent use of storytelling as they sought to discover meaning (leight, 2002). 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 (Watson, 2003); and that 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. Unfortunately, this narrative may fail to consider how cancer is experienced or to honor the differences in healing journeys (Watson, 2003). The nurse facilitator was cautioned about reliance on such narratives and was able to guide participants in telling their own personal stories of illnesses.
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!” Another woman referred to an essay by Kingsley (2001) and likened her cancer diagnosis to a trip to italy (her metaphor for health and wellness). 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. But then one said, “Well, I’m going to italy as well,” which led to stories about self-pity and how counterproductive it was to the daily business of living.
Control group: The aim of the control group was to foster participants’ coping abilities and to provide social support and information on cancer treatment. Participants occasionally told stories in response to questions about their health (Sandelowski, 1994), but they usually used the medical narrative. Unlike the nurse facilitator in the storytelling group, who avoided breaking stories apart to analyze them, the social worker facilitator used traditional group process techniques such as extracting and analyzing aspects from each participant’s contribution for discussion. However, participants expressed relief at finding others who understood the fears and pain of cancer diagnosis and treatment (perhaps a precursor to recognizing the importance of bearing witness to others’ suffering, if guidance had been available), as well as an opportunity to gain information about the disease. Patients sometimes mentioned their own personal experiences with cancer, although a difference between their stories and the medical narrative was not recognized. One such occurrence focused on hope, and the participants offered their own symbols for hope, expressed hope for effective treatment, and asked that a candle be lit “to give us spirit.”
Figuring Out How (If) to Get Through It: Coping and Not Coping
Storytelling group: 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 (Quinn, Smith, Ritenbaugh, Swanson, & Watson, 2003), acknowledging who they were, and reminding them that their disease did not define or tarnish them. 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.” 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.
Control group: group members tearfully discussed getting through the cancer journey with strengths they had not known they possessed prior to their diagnoses and were pleased with their ability to contribute to the project, although one woman found it difficult to live with uncertainty. They offered support to other group members undergoing crises such as divorce and scans to restage their cancer, occasionally sharing a group hug at the end of a session. One interesting dichotomy that surfaced was how they pointed out the need for understanding of each person’s unique story. One participant chose to worry only if the cancer actually recurred, whereas another chose to worry about the possibility of it recurring.
Experiences of Oncology Nurses Associated With the Project
Oncology nurses from a regional medical center were recruited to participate in this project. Despite their workloads and family responsibilities, facilitators and research assistants were willing to participate. The nurses expressed interest in any technique that would ease the suffering of patients with cancer, particularly inexpensive strategies with little risk to patients. Some nurses asked to attend the sessions even though they could not be part of the project because they wanted to learn skills they could use in their own practices. The medical center provided support so that nurses could receive training, during and after the project.
The nurses involved went on to incorporate storytelling techniques into their daily practices, even if only for a moment during a hectic day, and expressed appreciation for their increased abilities to ease suffering. The nurse who took primary responsibility for facilitating the storytelling group reported a profound change in her nursing care and expressed hope that more nurses be given the opportunity to learn the techniques.
The study included a small number of participants. A larger study would provide a greater understanding of the efficacy of storytelling groups. Also, the results of this study do not indicate whether the tool kit alone would be sufficient instruction. Perhaps the eight hours of training are vital, but a programmed instruction format could be used to present the principles and protocol in successive units followed by self-testing. Such instruction could include a videotape or slide presentation of a teacher discussing the materials or be presented in an interactive online format. Future studies could incorporate such training for facilitators and test for achievement of educational outcomes.
Benefit: increased Knowledge/Understanding cancer experience
Benefit: understanding or sharing coping related stories
Control group: in contrast more uncertainty
Impact and consideration to the social aspects
Facilitator of social interaction: HCP sharing personal information―suspended normal role.
Benefit of open sharing of difficult topics―like fears
Activity is self-directed, content self-selected making for a powerful participant led session
Intervention allowed a voice to different types of suffering, provided a platform for those who were distressed to talk plainly
Danger of storytelling and sharing: Potential negative outcome the way or freedom or uncontrolled nature of others reactions or use of personal and private information
Group creates a space of vulnerability―not everyone wants to share but may feel safe, then regret it
Danger of the group―monopoly by one person―could silence other
Benefit―the ability to freely express was observed to be healing
Training requirement for such a group
Social comparison as a direct benefit: The person working through challenges, overcoming obstacles or being able to mentally, emotionally or behaviourally change during the group could be inspiring and allow others to do the same.
Possible area for influencing results ? technique of facilitator same as story group.
Key differences printed information
Mechanisms at work:
1) acceptance of stories as whole and true, lack of judging or analysing or extracting―more sharing
2) Avoidance of probing
3) importance of entering and hearing anothers world and developing shared meaning
4) distance created of being an expert―told participants they are the experts
5) allowance for retelling of stories―or re-explored for meaning and meaning making
6) validation of suffering
7) consideration of social identity and impact of cancer on that identity
Benefit―not being too hard on themselves―group help individual see that they personally hadn’t done anything wrong in situations―they hadn’t failed
Group can introduce hope, collective experience may provide different ways to see the future
Outcome: impact on activities e.g., dancing
Process: being able to express suffering and illustrate pain, the journey and challenge faced
Process: group provides different ways to express by using others stories as a mechanism for positive change
Outcome/process: ability to share vulnerability, resentment. Ability to be ‘real’ with others
Process for effective outcome is shared understanding of the disease
Hope born out of shared suffering or unity
Mechanism for benefit: no need for the group to fix the problems that are shared just live with them
Outcome: Reaffirming a sense of self or social identity or shared identity that is how they define themselves.
Shared difficulties: experiences of not being who they once were or would like to be for others
Recognition of life in the present what it looks like and sharing that
Outcome: no change, not able to get past the impact of pain, or depression experienced
Element of the control group which is similar or crosses over with the intervention group
Outcome recognition by other stakeholders of the ability of sharing stories to limit or ease suffering