An Interpretive Phenomenological Examination of Psychosocial Changes among Breast Cancer Survivors in their First Season of Dragon Boating

1 1 6TITLE: An Interpretive Phenomenological Examination of Psychosocial Changes among Breast 7Cancer Survivors in their First Season of Dragon Boating 9SHORT TITLE: Psychosocial Changes among Breast Cancer Survivors 10 11Authors: Meghan McDonough (Purdue University), Catherine M Sabiston (McGill University), 12and Peter R E Crocker (University of British Columbia) 13 14 15Note: McDonough and Sabiston are co-authors on this paper and both made equal contribution 16 17Accepted for publication in the Journal of Applied Sport Psychology 18 19 20 21 1 2 Abstract This study used an interpretative phenomenological perspective to qualitatively examine 3changes in body image and social support experienced by novice participants in breast cancer 4survivor dragon boating programs Fourteen women were interviewed at the beginning and end 5of their first dragon boating season The participants typically experienced increased perceptions 6of strength and fitness, and a shift towards discussing body image with respect to fitness, 7strength, and musculature rather than weight and appearance Many women discussed an 8emerging athletic identity Social benefits included connecting to women who understood the 9breast cancer experience and could share first-hand information Some women also reported 10struggling with the constant reminder of being a survivor Overall, breast cancer survivors 11experienced benefits, but further work should explore how they cope with challenges and how 12dragon boating could inform other physical activity contexts for this population 13 14 15 16Key Words: Cancer, Oncology, Social support, Body image, Physical activity 1 Breast cancer is one of the most common types of cancer among North American women 2(Canadian Cancer Society/National Cancer Institute of Canada, 2006; National Cancer Institute, 32005) With diagnostic and treatment advances resulting in survival rates nearing 80% (Peto, 4Boreham, Clarke, Davies, & Beral, 2000), there is a growing emphasis on developing approaches 5to enhance women’s quality of life (QoL) following survival of breast cancer Understanding 6strategies that can help survivors manage cancer-related changes is of particular interest Research on QoL among breast cancer survivors has followed many perspectives 8However, there is emerging consensus that breast cancer QoL consists of physical, 9psychological, and social domains (Bloom, Stewart, Chang, & Banks, 2004; Ferrell & Hassey 10Dow, 1997) The physical dimension of QoL has been defined as control/relief of symptoms and 11the maintenance of function and independence The psychological domain includes cognitive and 12affective aspects including emotional distress, altered priorities, fear of recurrence and death, 13positive outcomes, body image, and self-esteem (Bloom et al., 2004; Pinto, Trunzo, Reiss, & 14Shiu, 2002) The social domain includes perceptions of the impact of cancer on others, 15provisions and needs for social support, and social network changes Recently, the role of 16physical activity on QoL domains has been explored 17 Evidence suggests that physical activity positively influences survivors’ physical, 18psychological, and social well-being (Courneya, Mackey, & McKenzie, 2002; Pinto et al., 2002; 19Rabin, Pinto, Trunzo, Frierson, & Bucknam, 2006) Specifically, a meta-analysis found that 20exercise is associated with improved QoL, physical functioning, and fitness and reduced fatigue 21in breast cancer patients and survivors (McNeely, et al., 2006) In addition, a recent qualitative 22investigation found that group exercise classes aimed exclusively at breast cancer survivors 23facilitated the reduction of barriers to activity and the provision of support in an environment that 1was not focused on cancer (Emslie et al., in press) However, there has not been an in-depth 2analysis of survivors’ perceptions of psychological and social changes associated with physical 3activity participation or the meaning survivors associate with those changes among those who 4have completed treatment Understanding the links between physical activity and psychosocial 5experiences is an important step in developing intervention strategies aimed at improving QoL in 6this population Two key QoL areas where physical activity may lead to psychosocial benefits for breast 8cancer survivors are body image and social support Body image is a relevant concern due to the 9significant changes associated with breast cancer surgeries and adjuvant treatments such as 10mastectomy, scarring, weight gain, hair loss, and impaired aerobic capacity (Baldwin & 11Courneya, 1997; Moyer, 1997; Schain, d’Angelo, Dunn, Lichter, & Pierce, 1994) Physical 12activity may help survivors attenuate some of the negative effects of cancer and treatment, 13including improvements in body image (Baldwin & Courneya, 1997; Courneya et al., 2002; 14Pinto, Clark, Maruyama, & Feder, 2003; Pinto & Trunzo, 2004) However, most research has 15focused on broad body-related issues and has not defined body image within a theoretical 16framework, limiting meaningful exploration and interpretation (White, 2002) Cash and 17Pruzinsky (2002) suggested that future research should conceptualize body image as a distinct 18multidimensional aspect of self-esteem that encompasses perceptions and affect related to body 19shape and appearance, physical functioning, and fitness It is also important to realize that 20perceptions of body image among breast cancer survivors may be a function of multiple cancer21related factors, psychological and physical characteristics, and social elements such as network 22size and relationship quality (White, 2002) 23 Social support is considered a coping resource in prominent theories of stress, coping, 1and emotion (e.g., Lazarus, 1999), and therefore has clear relevance for women who are 2managing multiple stressors related to breast cancer diagnosis, treatment, and survivorship 3(Deimling, Kahana, Bowman, & Schaefer, 2002; Deimling, Bowman, Sterns, Wagner, & 4Kahana,, 2006; Tomich, Helgeson, & Nowak Vache, 2005) Social support includes all social 5interactions aimed at inducing positive outcomes including social network structures, functional 6support exchanges, and perceptions of available support (Bianco & Eklund, 2001) Rees and 7Hardy (2000) identified four types of social support relevant in the sport setting: emotional, 8esteem, informational, and tangible support Work with athletes who have suffered a spinal cord 9injury has demonstrated that all four of these types of support play an important role in coping 10with the trauma of sustaining such an injury (Rees, Smith, & Sparkes, 2003) While these 11dimensions have not been explored specifically with a population of breast cancer survivors 12engaged in physical activity, there is evidence that the need for informational and emotional 13support relating to breast cancer experiences continues for years (see Vivar & McQueen, 2005 14for a review) Additionally, social support from other survivors has been found to play a unique 15role, including modeling post-traumatic growth (Weiss, 2004), providing information about 16survivorship issues, and understanding the breast cancer experience (Sabiston, McDonough, & 17Crocker,2007; Unruh & Elvin, 2004) Interventions that enhance survivors’ access to socially 18supportive relationships with other survivors within the context of physical activity may serve an 19important need in this population 20 One physical activity that may lead to enhanced body-related perceptions and social 21support is dragon boating A dragon boat is a large canoe-like boat that holds approximately 20 22paddlers It is a non-weight bearing, repetitive upper body activity that can accommodate 23individuals with different levels of fitness and ability together in the same boat (McKenzie, 11998) Dragon boating is a competitive activity that involves both intensive training and races 2with typical distances of 250 to 2000 meters The first dragon boating team of breast cancer 3survivors was created as part of a sports medicine study on the effects of upper-body exercise in 4this population (McKenzie, 1998) Since then, the sport has grown rapidly, with several hundred 5breast cancer survivors around the world currently participating Researchers have shown that 6dragon boating contributes to positive adaptations in the musculoskeletal and cardiovascular 7systems and functional ability (Courneya et al., 2002; McKenzie, 1998) Evidence suggests psychological benefits of dragon boating among breast cancer 9survivors include improved well-being, feelings of empowerment, post-traumatic growth, QoL, 10and enhanced social support and cohesion (Courneya, Blanchard, & Laing, 2001; Culos-Reed, 11Shields, & Brawley, 2005, McKenzie, 1998; Unruh & Elvin, 2004) This prior research has been 12limited in that much work has focused on predicting intentions to engage in dragon boating 13training (Courneya et al., 2001; Culos-Reed et al., 2005), but little is known about the changes 14that occur during the dragon boating season A better understanding of psychosocial changes 15may provide insight into motivation for participation in dragon boating Furthermore, qualitative 16approaches would allow an exploration of participants’ understanding of their experiences with 17dragon boating and possible processes by which QoL is enhanced through activity Given the 18growing popularity of dragon boating among breast cancer survivors, the accessibility of the 19activity to women with a wide range of abilities, coupled with the inherent team context, it is 20important to understand both what participants gain from engaging in dragon boating 21specifically, and whether key elements of this activity could be adaptable to a wider range of 22physical activities for this population 23 The purpose of this study was to explore changes in body image and social support 1experienced by breast cancer survivors during a novice season of dragon boating Novice dragon 2boat paddlers were targeted to examine changes associated with the women’s initial introduction 3into dragon boating through to the end of their first season Method Participants Fourteen women who were in their first year of a dragon boating program for breast cancer survivors participated in this study Participants ranged in age from 46 to 60 years (M = 54.23, SD = 4.66), and were predominantly (93%) Caucasian Eleven women were married or living in common-law partnerships and three were separated or divorced Participants had been 10 diagnosed with breast cancer between one and ten years prior to the study, with one woman 11 reporting a recurrence of breast cancer and another had experienced a second (ovarian) cancer 12 diagnosis All participants had undergone multiple treatments for breast cancer including 13 mastectomy, lumpectomy, lymph node removal, chemotherapy, radiation therapy, tomoxifen, and 14 breast reduction and reconstruction surgeries All but one participant indicated that they had 15 some past experience with sport or exercise The degree of involvement varied, with many 16 women reporting sporadic involvement prior to their cancer diagnosis 17 Procedure 18 Following research ethics board approval, coaches from all six of the local breast cancer 19 survivor teams were contacted and the two first authors visited each team at one of the first 20 dragon boating season practices All of these teams had both novice and veteran team members 21 The study was explained to all team members, and consent forms were distributed to interested 22 novice participants only Novice participants were targeted for this study to identify and 23 understand key cognitive and behavioral adaptations associated with initiating physical activity in a group of survivors Within those six teams, there were a total of 40 novice paddlers Fourteen women contacted the researchers by telephone to volunteer for the study (35% response rate) Each woman participated in two 45-60 minute interviews The first interview occurred within the first weeks of the dragon boating season, and the second occurred at the end of the season, within one week of the final competition (approximately 12 weeks later) An interpretive phenomenological approach was used to gather and analyze the data 7Interpretive phenomenological analysis (IPA) seeks to “explore in detail how participants are 8making sense of their personal and social world” and “is concerned with an individual’s personal 9perception or account of an object or event” (Smith & Osborn, 2003, p 51) This method is 10therefore well designed to examine women’s experiences of change in their first season of 11dragon boating as it emphasizes interpretation of participants’ own understanding of their 12experiences (Smith & Osborn, 2003) 13 Semi-structured interviews were designed to gather information about participants’ 14 experiences with dragon boating, physical self-perceptions, and social support, as well as 15 demographic and breast cancer treatment information Based on IPA guidelines (Smith & 16 Osborn, 2003), an interview guide was developed to include questions about the major topics of 17 interest, but there was flexibility to change the order of questions and probe interesting areas that 18 arose to follow the participant’s perspective The main questions were based on participation 19 motivation, multidimensional body image, and social support theoretical perspectives and 20 addressed how participants heard about the dragon boating program and why they got involved 21 (e.g., What are your reasons for participating in the program?), what they expected from their 22 participation (e.g., Do you have any goals or objectives to achieve through your participation?), 23 their perceptions of themselves physically (e.g., What are the main factors that influence your physical perceptions?), and their social support network (e.g., Can you describe to me your social support network?) The second interview addressed what they felt they got out of their participation in dragon boating (e.g., What did you get out of your participation in the dragon boating program?) and whether the experience had met their expectations (e.g., Did you meet any physical goals or experience any physical changes?) Each interview was conducted by one of the first two authors, and were audio taped and transcribed verbatim, and data were organized using the data storage software QSR N6 Smith and Osborn’s (2003) recommendations for IPA analyses were followed, with some 9modifications to incorporate the independent input from each of the two interviewers (the first 10two authors) First, a transcript was read by the author who conducted that interview During this 11reading, all information that was relevant to the purpose of the study was identified and coded in 12a free textual analysis In a second reading, the coded information was examined and grouped 13into higher-order themes Titles were created to capture the meaning expressed in each category 14or higher-order theme A list of themes and codes was then compiled These themes were 15grouped and ordered based on the connections and interpretations made in the analysis, and a 16table of codes and themes was created based on this analysis At this stage, the other author read 17the coded transcript and list of themes to confirm whether the coding was appropriate and 18consistent In cases where this reading identified a disagreement between the two authors, both 19authors went back to the original transcript, discussed the coding, and a consensus was reached 20Once the analysis had been completed for one transcript, a second transcript was coded The 21table of themes was used to code similar meanings in the same categories, and was expanded to 22incorporate new ideas as they emerged During this process, the emerging themes were 23continually compared back to the original transcripts to ensure consistency Once this process 10 1had been completed for all transcripts, each transcript was re-read by both authors to ensure that 2all themes were coded consistently (Smith & Osborn, 2003) Changes experienced by 3participants across the two time points were examined using an idiographic approach resembling 4Holt and Dunn (2004)’s research, where they created a table detailing the idiographic 5chronological process for each individual under each of the major themes Following the 6thematic analysis described above, each participant’s perceptions in each of the higher-order 7themes were compared at each time point This analysis was used to create individual profile 8summaries for each individual with respect to the emergent themes at each time point The final 9written account of results included the interpretation of results, quotations that illustrated 10emergent themes, and a profile table outlining the experiences of each participant 11 Principles of trustworthiness outlined by Lincoln and Guba (1985) were used to evaluate 12the research Trustworthiness comprises the concepts of credibility, transferability, dependability, 13and confirmability Based on suggestions by Sparkes (1998), the specific criteria used to assess 14the validity of the findings relative to each of these four dimensions were chosen to reflect the 15ontological and epistemological basis of IPA Credibility deals with establishing that the results 16reflect the participants’ experiences of truth In this study, credibility was enhanced through 17interviewing participants on more than one occasion, having two investigators involved in every 18level of analysis, and having an author with several prior years of experience with dragon 19boating in the community involved in the study Transferability is concerned with the 20applicability of the findings to a larger population, and in this study was enhanced by providing 21substantial description, raw data in the form of quotations, and the profile summaries table so 22that the reader may see and judge the potential transferability of the results Dependability refers 23to whether the findings would be consistent if they were replicated, and is enhanced in this study 21 1settings These SPA experiences were primarily linked to physical changes associated with breast 2cancer treatment and perceptions that others were evaluating the women’s ‘lopsided’, ‘mis3shaped’, or ‘disfigured’ bodies Feelings of overweight also affected SPA Within the dragon 4boating environment, however, SPA was rarely experienced These state-like attributes have not 5been explored, as prior research has primarily focused on the dispositional (or trait) SPA 6characteristics There is some evidence that state-SPA influences health-related emotion and 7behaviour among adolescent females (e.g., Kowalski, Mack, Crocker, Niefer, & Fleming, 2006; 8Sabiston et al., 2007) Similar implications for breast cancer survivor SPA experiences need to be 9explored in future QoL research to pinpoint antecedents and consequences of these body-related 10emotions 11 The discussions about social support in the dragon boating context highlighted the 12overwhelmingly positive social experiences, but also illuminated unique social contexts where 13some women struggled Most strikingly, many women were not seeking social support, but all 14participants identified receiving social support through their participation Two interesting 15observations emerge from this finding First, there is a common emotional connection that seems 16to form quickly Second, even though most participants already felt well supported by their 17friends and family, dragon boating seems to further enrich these women’s lives and provide 18benefits they did not anticipate or did not see as wanting The support qualities found in dragon 19boating parallel reported benefits of self-help and support groups, where survivors received a 20sense of independence and equality in addition to extensive emotional and social support (Gray, 21Fitch, Davis, & Philips, 1997; Midtgaard, Rorth, Stelter, & Adamsen, 2006) 22 Experiencing support in a physical activity context such as dragon boating seemed to 23have unique benefits and functions that were well suited to this population of survivors While 22 1support groups tend to be targeted toward women who are in the initial treatment and recovery 2states, most dragon boating participants are beyond those phases Research has demonstrated that 3breast cancer survivors continue to have needs for support long term, and that support needs 4change as women move farther away from the acute phases of the disease (Vivar & McQueen, 52005) Activities such as dragon boating, where discussions about breast cancer and the 6provision of social support are not a primary focus of the group, seem to help fulfill these needs 7(Emslie et al., in press) In addition, work with survivors who have been involved in dragon 8boating for more than one season has found that the combination of social support and positive 9physical self-perception changes contributes to positive psychological outcomes in the wake of 10breast cancer including closer relationships, new possibilities and opportunities, psychological 11strength, and a renewed appreciation of life that are in line with posttraumatic growth theory 12(Sabiston et al.,2007; Tedeschi & Calhoun, 2004) The findings in the present study suggested 13that women begin to experience these positive social and psychological changes even within the 14first 12 weeks of participation, and therefore supports dragon boating as an intervention targeting 15positive QoL in this population 16 Despite all of these positive experiences, social support and interactions were not 17exclusively positive Many women found that dragon boating re-affirmed their identity as 18survivors of breast cancer, and brought negative emotions associated with that identity to the 19forefront These women also highlighted positive social elements associated with their 20participation, however, the challenges of embracing a survivor identity may foster vulnerability 21that could lead to limiting or dropping out of dragon boating In a qualitative study of breast 22cancer survivors who had been involved in dragon boating for at least two seasons, some women 23discussed possibly leaving dragon boating and knowing other women who have left, because of 23 1the challenges associated with re-identifying as a survivor of breast cancer and the possibility of 2recurrence among members of the group (Sabiston et al.,2007) Future work in this area needs to 3address how women cope with these challenges to help them maintain participation This study enabled a comprehensive exploration of change in body image and social 5support during a novice season of dragon boating While following breast cancer survivors 6throughout their inaugural training is a strength of this study, there are some limitations Similar 7to other studies in this area, the results are based on a group of self-selected middle-aged breast 8cancer survivors participating in a team physical activity Therefore, the findings reflect the 9experiences of this population, and may vary, for example, in a group of younger survivors or 10among women from a wider diversity of cultural backgrounds Inasmuch as this sample appears 11to lack diversity, during some interviews it was mentioned that breast cancer survivor dragon 12boaters tend to be disproportionately Caucasian, highly educated, and of moderate to high SES, 13so this sample may be characteristic of the population The response rate also presents a 14limitation to this study Approximately one third of the target population volunteered to take part 15Therefore it is possible that the views and experiences of some novice paddlers are not 16represented in these findings Furthermore, the qualitative approach to exploring experiences of 17dragon boating among survivors was a strength to this study; 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Body image: A handbook of theory, research, and clinical practice (pp 379-386) New York: Guilford 31 1Table 3Profile summaries of changes in physical appearance, physical functioning, physical competence and fitness, and social support in 4each participant over the 3-month dragon boating program ID # Physical Appearance Physical Functioning Physical Competence & Fitness Social Support  No weight change  No changes in strength or  No fitness changes (improved  TM provided support energy  Lost weight  Stronger prior to DB)  TM share information about BC  Competitive  No fitness changes (injured)  TM provided support  Athletic identity  TM have first-hand understanding of BC  Looks younger/healthier  Lost weight  Increased energy  Increased fitness  TM share information about BC  TM provided support  Stronger  Increased confidence in other  TM have first-hand understanding of physical activities  Athletic identity  Competitive BC  TM share information about BC 32 ID # Physical Appearance Physical Functioning  Gained weight  Increased energy (muscle)  Stronger Physical Competence & Fitness Social Support  Increased fitness  TM provided support  Increased confidence in other physical activities  Competitive  TM have first-hand understanding of BC  TM share information about BC  Hard to connect due to emphasis on  Increased fitness BC  TM provided support  Looks  Increased confidence in other  TM share information about BC younger/healthier  More muscular  Increased energy physical activities  Increased fitness  TM provided support  Gained weight  Stronger  Increased confidence in other  Coach provided support  Lost weight (muscle)  Stronger physical activities  Athletic identity  TM have first-hand understanding of BC  TM share information about BC 33 ID # Physical Appearance Physical Functioning  Looks  Increased energy younger/healthier  Stronger  More muscular Physical Competence & Fitness Social Support  Increased fitness  TM provided support  Increased confidence in other physical activities  No weight change  Coach provided support  TM have first-hand understanding of BC  TM share information about BC  Hard to connect due to emphasis on  No weight change  Increased energy  Increased fitness BC  TM provided support  Increased confidence in other  TM share information about BC physical activities  Not competitive 34 ID # Physical Appearance Physical Functioning  Looks  Increased energy younger/healthier  Stronger  More muscular Physical Competence & Fitness Social Support  No fitness changes (improved  TM provided support prior to DB)  Increased confidence in other physical activities  No weight change  Coach provided support  TM have first-hand understanding of BC  TM share information about BC  Hard to connect due to emphasis on 10  Looks  Stronger younger/healthier  More muscular 11  No weight change  More muscular  No weight change  Increased fitness BC  TM provided support  Increased confidence in other  TM have first-hand understanding of physical activities  Stronger BC  Athletic identity  Increased fitness  TM share information about BC  TM provided support  Athletic identity  Coach provided support  Not competitive  TM have first-hand understanding of BC 35 ID # Physical Appearance Physical Functioning 12  Gained weight  Increased energy (muscle)  Stronger Physical Competence & Fitness Social Support  Increased fitness  TM provided support  Increased confidence in other  TM share information about BC physical activities 13  Looks younger/healthier  Athletic identity  No changes in strength or  Increased fitness energy  No weight change 14  No weight change  Increased confidence in other physical activities  Stronger  Athletic identity  Increased fitness  TM provided support  Increased confidence in other  TM have first-hand understanding of physical activities  Not competitive 3Note DB=dragon boating, TM=teammates, BC=breast cancer  TM provided support BC ... (QoL) following survival of breast cancer Understanding 6strategies that can help survivors manage cancer- related changes is of particular interest Research on QoL among breast cancer survivors. .. boating 4team for breast cancer survivors affirmed and constantly reminded women of their status as a 5survivor In particular, dragon boating with a team of breast cancer survivors was a reminder... by breast cancer survivors during a novice season of dragon boating Novice dragon 2boat paddlers were targeted to examine changes associated with the women’s initial introduction 3into dragon boating