About CES4Health

Product Details

Product at a Glance - Product ID#DLFLZP5W


Title: The New Normal: Living with Lymphedema after Breast Cancer


Abstract: The New Normal: Living with Lymphedema after Breast Cancer educational YouTube Video features an ethnodrama performance of the lived experiences of breast cancer survivors with arm problems along with interviews with the researchers and participants involved in the production of the ethnodrama. The 30 minute YouTube Video ethnodrama performance (available in both, English and French versions) and accompanying discussion questions are intended to increase awareness of arm problems following treatment for breast cancer and to change attitudes and practices related to arm mobidity. Treatment for breast cancer often produces arm pain, lymphedema, and range of motion limitations for survivors. These 3 types of arm morbidity can have a significant impact on survivors’ work, leisure, and relationships. Improvements in care, including screening of arm morbidity by nurses and physicians and increased referrals to physical therapists and occupational therapists, can be achieved through improved knowledge transfer to both, survivors and health care providers. Traditional strategies to disseminate new knowledge from health research have focused on the publication of research results. Recently, the use of the creative arts to disseminate results has been found to capture the imagination of health care practitioners and engage them in critical thought. Theatre, in particular, is a uniquely powerful media, evoking responses that are spontaneous, intuitive, affective as well as cognitive.


Type of Product: YouTube Video and Interviews with accompanying discussion questions


Year Created: 2012


Date Published: 9/1/2014

Author Information

Corresponding Author
Elizabeth Quinlan
University of Saskatchewan
Department of Sociology
9 Campus Drive
Saskatoon, SK S7N 5A5
Canada
p: 306-966-6937
elizabeth.quinlan@usask.ca

Authors (listed in order of authorship):
Elizabeth Quinlan
University of Saskatchewan

Roanne Thomas
University of Ottawa

Shahid Ahmed
University of Saskatchewan

Pam Fichtner
Sephira Healing

Linda McMullen
University of Saskatchewan

Janice Block
Royal University Hospital

Product Description and Application Narrative Submitted by Corresponding Author

What general topics does your product address?

Arts & Design, Medicine, Nursing, Social & Behavioral Sciences


What specific topics does your product address?

Access to health care, Advocacy, Cancer, Chronic disease, Disabilities, Health care quality, Health education , Rehabilitation, Women's health , Lymphedema


Does your product focus on a specific population(s)?

Disabled, Women


What methodological approaches were used in the development of your product, or are discussed in your product?

Arts-informed methodologies, Focus group , Survey, Ethnodrama, Interview


What resource type(s) best describe(s) your product?

Faculty development materials, Service learning material


Application Narrative

1. Please provide a 1600 character abstract describing your product, its intended use and the audiences for which it would be appropriate.*

The New Normal: Living with Lymphedema after Breast Cancer educational YouTube Video features an ethnodrama performance of the lived experiences of breast cancer survivors with arm problems along with interviews with the researchers and participants involved in the production of the ethnodrama. The 30 minute YouTube Video ethnodrama performance (available in both, English and French versions) and accompanying discussion questions are intended to increase awareness of arm problems following treatment for breast cancer and to change attitudes and practices related to arm mobidity. Treatment for breast cancer often produces arm pain, lymphedema, and range of motion limitations for survivors. These 3 types of arm morbidity can have a significant impact on survivors’ work, leisure, and relationships. Improvements in care, including screening of arm morbidity by nurses and physicians and increased referrals to physical therapists and occupational therapists, can be achieved through improved knowledge transfer to both, survivors and health care providers. Traditional strategies to disseminate new knowledge from health research have focused on the publication of research results. Recently, the use of the creative arts to disseminate results has been found to capture the imagination of health care practitioners and engage them in critical thought. Theatre, in particular, is a uniquely powerful media, evoking responses that are spontaneous, intuitive, affective as well as cognitive.


2. What are the goals of the product?

The goals of the product include:
The New Normal: Living with Lymphedema after Breast Cancer educational YouTube Video and accompanying discussion questions will enhance the impact of our ethnodrama knowledge translation (KT) project by extending the benefits of the project beyond the live ethnodrama performances. Distribution of the YouTube Video and accompanying discussion questions to health care provider and survivorship communities will increase knowledge concerning the effects of arm morbidity on breast cancer survivors’ work, leisure, and relationships, potentially changing attitudes and practices related to arm morbidity of breast cancer survivors. Arm morbidity—pain, range of motion limitations and lymphedema—is common among breast cancer survivors following surgery. It can have a devastating impact on various aspects of survivors’ lives (e.g., work, leisure, family). Early detection and treatment of arm morbidity by health professionals with relevant training and experience is more successful than late identification and intervention in minimizing symptoms and its effects on quality of life. Enhanced diagnostic and treatment protocols, in particular screening and referrals, are achievable by improving knowledge transfer to health care providers. Knowledge and self-care are also important aspects of the management of arm morbidity symptoms. We expect that changes in knowledge and self-care will occur after viewing the YouTube Video and discussing and reflecting on the accompanying questions.

The study’s results are also being disseminated through the publication of findings, as well as analyses of the process in the form of journal articles, reports, and executive summaries submitted to: oncology, sociology, psychology, and rehabilitation medicine journals; provincial and national cancer and lymphedema organizations including but not limited to Breast Cancer Action Saskatchewan, Saskatchewan Breast Cancer Network, Hope Cancer Help Centre, Saskatoon Breast Health Centre; and local media (television, radio, and newspapers). The educational YouTube Video will include a link to these resources via the Ethnodrama Study website. The website features work-in-progress and is intended to facilitate a virtual ‘community-of-practice’ on arm morbidity associated with breast cancer for continuous improvement of the research, in accordance with the program’s iterative KT strategy.


3. Who are the intended audiences or expected users of the product?

Audiences for the educational YouTube Video and accompanying discussion questions include survivor organizations (e.g., Provincial and National Cancer and Lymphedema organizations) and students of clinical training programs (e.g., Faculties of Medicine, Nursing, Physiotherapy, Massage Therapy). To facilitate distribution of the YouTube Video and accompanying discussion questions, a list of approximately 100 training programs and 40 survivor organizations has been compiled. Personalized invitations which include the discussion questions and the url address for the YouTube Video will be sent to each of these organizations via e-mail. The invitations will also include information for obtaining a copy of the DVD version of the Ethnodrama performance if that is a preferred option.


4. Please provide any special instructions for successful use of the product, if necessary. If your product has been previously published, please provide the appropriate citation below.

Information about the project, as well as the 7 discussion questions are provided in the About section of the YouTube channel.

If, after reviewing the videos on YouTube via CES4Health, a DVD copy of the videos is desired, please contact Elizabeth Quinlan at elizabeth.quinlan@usask.ca.


5. Please describe how your product or the project that resulted in the product builds on a relevant field, discipline or prior work. You may cite the literature and provide a bibliography in the next question if appropriate.

An estimated 22, 900 Canadian women will be diagnosed with breast cancer in 2013.1 Our national, longitudinal study indicates the arm morbidity prevalence—pain, lymphedema and limited range of motion--- among breast cancer survivors is high and that it can have a devastating impact on various aspects of survivors’ lives (e.g., work, leisure, family)2-12. While early diagnosis and treatment is critical to minimize these long-term impacts, few organized cancer rehabilitation programs in Canada address arm morbidity. Furthermore, there is no consensus among health care providers regarding the treatment of lymphedema and even less is known about pain and range of motion restrictions. Physical therapists report that increased knowledge about conditions such as lymphedema would enhance their practices more than better equipment or patient compliance, but arm morbidity KT initatives have been scarce, if non-existent. Improvements in care, including the screening of arm problems by nurses, physicians, and other health care providers, as well as increased referrals to physical therapists and occupational therapists, can be achieved through improved knowledge transfer to health care providers and survivors.

The need for innovative KT strategies in health research is well known13-17. Ethnodrama is an innovative KT strategy that uses theatrical performances based on research findings to disseminate resesarch results to a variety of audiences. It has been used by Co-PI Quinlan in other studies18 but has yet to be used to transfer findings regarding arm morbidity among breast cancer survivors. The New Normal: Living with Lymphedema after Breast Cancer educational YouTube Video/DVD and accompanying discussion questions enhances the reach of our Ethnodrama KT project by extending the benefits of the project beyond the live ethnodrama performances.
The KT strategy used was an interactive ethnodrama (IE) performance. IE accords with an ascendant view of KT as being dynamic, iterative, and situated within a complex system of interactions between researchers and stakeholders. IE is interactive in that it involves the audience in a critical reflective discussion following a play’s presentation. Our IE is also interactive in its inception in that it takes its inspiration from the lives of the participants themselves in creating knowledge grounded in immediate experience and direct experiment. The tasks of scriptwriting, directing, and acting were all accomplished by those with ‘insider’ knowledge of the everyday actualities of arm morbidity following breast cancer.


6. Please provide a bibliography for work cited above or in other parts of this application. Provide full references, in the order sited in the text (i.e. according to number order). .

1Canadian Cancer Society. About cancer. Retrieved March 13, 2013 from Canadian Cancer society website: www.cancer.ca

2Quinlan E, Thomas-MacLean R, Hack TF, Tatemichi S, Towers A, Kwan W, Miedema B, Tilley A. (2011). Breast Cancer Survivorship and Work Disability Journal of Disability Policy Studies, 22(1): 18-27

3Quinlan, E., Thomas-MacLean, R., Hack, T.F., Kwan, W., Miedema, B., Tatemichi, S., Towers, A. & Tilley, A. (2009). The Impact of Breast Cancer among Canadian Women: Disability and Productivity Work: A Journal of Prevention, Assessment and Rehabilitation, 34(3).

4Thomas-MacLean R, Spriggs P, Quinlan E, Towers A, Hack TF, Tatemichi S, Miedema B, Kwan W, Tilley A. Arm Morbidity and Disability: Reporting the Current Status from Canada. Journal of Lymphoedema (2010) 5(2):33-38.
5Thomas-MacLean, R., Hamoline, R., Quinlan, E., Tatemichi, S., Hack, T.F., Tilley, A., Kwan, W., Towers, A. and Miedema, B. (2009, in progress). At arm’s length: Women discuss leisure, quality of life and arm morbidity after breast cancer.
6Thomas-MacLean, R., Towers, A., Quinlan, E., Hack,T., Kwan, W., Miedema, B., Tilley, A., & Graham, P.(2009). “This is a kind of betrayal”: A Qualitative Study of Disability after Breast Cancer. Current Oncology, 16 (3): 26-32.
7Thomas-MacLean, R., Hack, T., Kwan, W., Towers, A., Miedema, B., and Tilley, A. (2008). Arm Morbidity and Disability after Breast Cancer: New Directions for Care. Oncology Nursing Forum, 35 (1):65-71.
8Hack, T.F., Kwan, W., Thomas-MacLean, R.L., Towers, A., Miedema, B., Tilley, A., Chateau, D. (2010). Predictors of arm morbidity following breast cancer surgery. Psycho-Oncology, 19, 1205-1212. doi:10.1002/pon.1685.
9Miedema, B. Hamilton, R., Tatemichi, S., Thomas-MacLean, R.,Towers, A., Hack, T., Tilley, A., Kwan, W. (2008). Arm Morbidity following Breast Cancer Surgery: Impact on Recreational and Leisure Activities 6-12 Months Post Surgery. Journal of Cancer Survivorship, 2: 262-268

10Tilley, A., Thomas-MacLean, R., & Kwan, W. (2009). Lymphatic Cording or Axillary Web Syndrome after Breast Cancer Surgery. Canadian Journal of Surgery. 54(4): E105-E106

11Timpson, J.R. (1999). Disability and impairment in breast cancer: Towards an understanding of altered body functioning and a standard of care for nursing practice. European Journal of Oncology Nursing, 3(1):14-24.

12Towers A. (2008).Lymphoedema, pain and disability: are we ignoring large parts of the picture? Journal of Lymphedema, 3(1):8.

13Pearson, S., Rolfe, I. & A. Smith. (2002). Factors influencing intern prescribing: an intern’s perspective. Medical Education, 36:781-787.

14Boissel, J-P. & E. Amsallem. (2004). Bridging the gap between therapeutic research results and physician
prescribing decisions: knowledge transfer, a prerequisite to knowledge translation. European Journal of Clinical Pharmacology, 60:609-616.

15Davis, D. (2006). Continuing education, guideline implementation, and the emerging transdisciplinary field of knowledge translation. The Journal of Continuing Education in the Health Professions, 26(1):5-12.

16Ely, J., Osheroff, J., Ebell, M., Bergus, G. Levy, B., Chamblis, M & E. Evans. (1999). Analysis of questions asked by family doctors regarding patient care. BMJ , 319:358-361.

17Estabrooks, C., Wallin, L., & Milner, M. (2003). Measuring knowledge utilization in health care. International Journal of Policy Evaluation and Management, 1(1):3-36.

18Quinlan, E. & Duggleby, W. (2009). Breaking the 4th wall: Using participatory theatre to investigate and foster hope among family caregivers of people with dementia. International Journal of Qualitative Studies on Health and Well-Being, 4(4):207-219.


7. Please describe the project or body of work from which the submitted product developed. Describe the ways that community and academic/institutional expertise contributed to the project. Pay particular attention to demonstrating the quality or rigor of the work:

  • For research-related work, describe (if relevant) study aims, design, sample, measurement instruments, and analysis and interpretation. Discuss how you verified the accuracy of your data.
  • For education-related work, describe (if relevant) any needs assessment conducted, learning objectives, educational strategies incorporated, and evaluation of learning.
  • For other types of work, discuss how the project was developed and reasons for the methodological choices made.

Prior to recruiting participants for the ethnodrama script development workshops, ethics approval for the study was secured from the Co-PI’s university behavioural ethics committee. Following a widespread recruitment process (i.e., postering in strategic locations within the community including the cancer clinic, libraries, community bulletin boards; advertising in cancer organization newsletters, websites and local newspapers; PSAs on local and provincial radio stations; and word of mouth) information about the ethnodrama project was provided to 24 women who expressed interest in the study. After taking into consideration pre-established inclusion and exclusion criteria of the study, and the interest and availability of the women, 7 women were invited to attend an initial meeting to discuss further details of the project. All who attended that initial meeting consented to participate in 2 day-long script development workshops.
All workshop participants had been diagnosed with breast cancer 3-7 years prior, all were experiencing symptoms of arm disability following treatment for cancer and all were being followed by their family physician at the time of the study. Ages of the participants ranged from 38-65 years and annual family incomes ranged from $20K to $80K+. All of the women were, or had worked in the paid labour market, 6 were married or living common law and 2 had children living at home. Two of the participants lived in rural communities.At the first script development workshop, rules of conduct (e.g., respect for each individual, the individual right to participate as well as to refuse to participate and responsibility for facilitating others’ participation) were proposed and agreed to by the participants, dramaturge and Co-PIs. At the outset of each workshop, participants were invited to participate in a series of gentle yoga movements and breathing activities. Following these ice breaking activities, several creative art forms (collages, free-writing, installations) were used as vehicles for sharing stories among the workshop participants and collectively reflecting on their meaning. Each of the day-long workshops was audio-taped and transcribed verbatim. The ethnodrama script was created by a dramaturge using the audio-tapes and transcripts of the workshops’ group discussions, summary findings from the national, longitudinal study and consultations with the Co-PI’s of the research team. At the first rehearsal of the ethnodrama script, 4 of the 7 participants who had agreed to remain involved with the project as actors participated in a reading and initial revision of the script. Following a series of rehearsals of the revised script, a performance of the ethnodrama was piloted to an audience of health care providers and survivors and further revisions of the script were made on the basis of feedback from audience members. To date, a total of 9 live performances of the resulting 30-minute script have been held in 6 Canadian cities for both, English and French audiences of health care providers and survivors. In all but 2 of the live performances, the ethnodrama’s 4 characters have been performed by participants of the original script development workshops. Each of the 7 participants was interviewed 4-6 months following the script development workshops. The interviews were used to explore the potential of the expressive arts and the women’s experiences in the workshops as a means of empowerment. In addition, each of the 4 workshop participants who had also participated in the live performances of the ethnodrama were interviewed and those interviews were videotaped. Juxtapose Productions Inc. was contracted to film, edit and produce the YouTube Video versions of the project. The final product integrates interviews with the Co-PIs and workshop/performance participants in addition to the Ethnodrama performance. A series of 7 discussion questions is appended to the YouTube Video to initiate critical reflective discussion among members of the viewing audiences.


8. Please describe the process of developing the product, including the ways that community and academic/institutional expertise were integrated in the development of this product.

The purpose of our KT study and KT supplement was to increase knowledge and awareness of the impact of arm marbidity after breast cancer among two types of audiences (health care providers and survivors) with the aim of changing their attitudes and practices related to arm morbidity.
The techniques of IE aim to empower individuals and groups to become protagonists of their own lives within a society imaginatively shaped by its members. In IE, also known as ‘participatory’, ‘community’ or ‘applied’ theatre, scenarios are developed by a core group of non-actor participants to reflect the underlying stories of their everyday lived experience. Participants are not required to have previous training in acting and only a minimum of sets, props, and costumes are used.
The empowering value for participants of interactive ethnodrama has been clearly demonstrated in previous studies carried out by Co-PI Quinlan. In one study, health care aides used the process to critically discuss workplace bullying with their peers, with lasting impact when they returned to their workplaces. Participants of another of Quinlan’s studies reported that their involvement broke down their sense of isolation and contributed to their ability to reconstitute hope. Other studies indicate that the creative, collective processes of IE empower participants through the development of group cohesion, solidarity, and mutual support, so they are able to initiate and direct concrete actions that change their lives individually and collectively. The performative enactments are rehearsals for reality, which allow the participants to approach ‘real life’ from a stronger position. Because the IE techniques rely on shared experience and purpose, participants develop a strong sense of collectivity with other participants. Thus, IE is a lever for personal and collective empowerment. Our KT study and supplement followed this line of inquiry and considered IE as a potential psychosocial intervention to empower survivors and improve their ability to cope with arm morbidity.

The YouTube video and accompanying discussion questions, allows for the dissemination of the ethnodrama performance and the process of its creation, to locations and audiences beyond the scope of those reached via the original projects


9. Please discuss the significance and impact of your product. In your response, discuss ways your product has added to existing knowledge and benefited the community; ways others may have utilized your product; and any relevant evaluation data about impact, if available. If the impact of the product is not yet known, discuss its potential significance.

Findings from our national arm morbidity study indicate that well over 50% of women diagnosed with breast cancer are likely to experience pain, lymphedema, and/or range of motion restrictions up to two years post-surgery and that many aspects of women’s lives will be affected well beyond this period of time. During presentations delivered by the arm morbdity study team members, we have been approached by clinicians for information regarding treatment of arm morbidity. Growing concern about the impact of arm morbidity within the larger society is reflected in the imminent development and implementation of a national lymphedema framework. Enhanced treatment protocols to help breast cancer survivors suffering from arm morbidity, and greater social support from family members can be achieved through the innovative knowledge translation strategy of IE. Our study is contributing to the KT literature by considering the impact, not solely on health care providers and decision-makers, as it traditionally has been done, but also on those involved in the creation and development of the knowledge and its translation. Our study also contributes to the growing body of work on psychosocial interventions for cancer patients by considering survivors’ involvement in the collective processes of creating and presenting ethnodramas as a psychosocial intervention.
The New Normal: Living with Lymphedema after Breast Cancer educational YouTube Video and accompanying discussion questions are components of a developing toolkit of resources for health care providers and breast cancer survivors that include and establish linkages between conventional academic forms of KT (e.g., journal articles, conference presentations) and newer, interdisciplinary and participatory forms of KT (e.g., virtual community of practice).
Enhanced diagnostic and treatment protocols, in particular screening and referrals, are achievable by improving knowledge transfer to health care providers. Knowledge and self-care are also important aspects of the management of arm morbidity symptoms. We expect that changes in knowledge and self-care will occur after viewing the YouTube videos and discussing and reflecting on the accompanying discussion questions.


10. Please describe why you chose the presentation format you did.

In order to disseminate the findings, a YouTube Video was created. Health care professionals, breast cancer survivors and lymphedema sufferers were the main audience members. However, preventive measures are important, therefore it is necessary to connect with a broader audience. A video allows the dissemination to go beyond academia. Lay people are better able to access in this user-friendly fashion. Additionally, the video allows all interested parties to watch the video multiple times. As well, the information is able to be passed along easily to other interested parties.
An ethnodrama was chosen because, as expressed by the viewers, hearing the women tell their stories provides a much stronger and lasting effect than if they were to read the experiences of the women in a text book.


11. Please reflect on the strengths and limitations of your product. In what ways did community and academic/institutional collaborators provide feedback and how was such feedback used? Include relevant evaluation data about strengths and limitations if available.

A particular strength of the YouTube Video format of the ethnodrama project is its capacity to extend the content of the ethnodrama performance and the process of IE to audiences of health care providers and survivors who could not be reached via the live performances undertaken as part of the original projects. Further, the YouTube Video format will allow audience members the option to watch all sections in their entirety, or to focus on particular sections, or portions of sections that are directly relevant to the needs and interests of particular audiences. These formats also accommodate critical reflection on issues by allowing for the replaying of specific parts for additional analysis and understanding. Finally, having the product available in DVD format ensures its accessibility to audiences who may not have access to internet capability.
The use of a video presents a few limitations. Firstly, although the video allows a viewer to watch the all of the sections in their entirety, or to focus on specific sections, because of the length health care professionals may be less inclined to watch the video due to their busy schedules. Secondly, the video does not address the breast cancer population specifically. Rather, the video focuses on lymphedema sufferers, which constitute about 35% of the population. Lastly, the product is inaccessible to the deaf and hearing-impaired individuals.


12. Please describe ways that the project resulting in the product involved collaboration that embodied principles of mutual respect, shared work and shared credit. If different, describe ways that the product itself involved collaboration that embodied principles of mutual respect, shared work and shared credit. Have all collaborators on the product been notified of and approved submission of the product to CES4Health.info? If not, why not? Please indicate whether the project resulting in the product was approved by an Institutional Review Board (IRB) and/or community-based review mechanism, if applicable, and provide the name(s) of the IRB/mechanism.

The study used a multi-pronged recruitment strategy to ensure widespread contact to breast cancer survivors and to invite interested women to participate in two day-long script development workshops. Of the 24 women who originally expressed interest in the project, a total of 7 women met the study’s criteria of inclusion and exclusion and were also in a position to commit to the time required to participate in the project. Upon completion of the script development workshops, 4 of the participants remained involved with the project as actors in a majority of the live performances of the English version of the ethnodrama, and one of these participants participated in all of the French performances. Over time the 4 women demonstrated considerable ownership of the project through their participation in television and radio interviews to publicize performances in particular communities and through their role as facilitators of the discussions with audiences at each performances. In fact, all but one of the seven original participants was in agreement with being identified and acknowledged in the credits for the YouTube version.
At the first script development workshop, in addition to fulfilling the formal requirements of the ethics approval secured from the researchers university behavioural ethics committee, the researchers, dramaturge and participants openly discussed and agreed to several ‘ground rules’ to guide their individual and collective conduct within the workshop sessions. These ground rules included respect for individual difference, right to participate or to refuse, and responsibility for other’s participation. At each of the workshops, time was taken at the outset to break the ice and build relations of mutual trust among all participants (researchers, dramaturge, participants) through involvement in gentle yoga and breathing activities prior to initiating work with the creative activities (collaging, free writing, art installations) used to share individual experiences and facilitate collective reflection. In hindsight, the creative expressions of individual realities seem to have contributed to heightened interactivity and socialization among members of the group. In fact many continue to visit one another, share meals and stay in touch by phone and e-mail. In the words of one of the participants reflecting on her experience at the workshop, “I felt, like really joyful….it’s that maybe I can share some ideas that might help someone else and that felt really good.”