Working Paper: Discovering and Dreaming of the Ideal Possibilities for a

Healthy Workplace Response to Breast Cancer

 

PARTNERSHIP FOR A HEALTHY WORKPLACE RESPONSE TO BREAST CANCER

CIHR-SSHRC HEALTHY AND PRODUCTIVE WORKPLACE

PARTNERSHIP DEVELOPMENT GRANT (REFERENCE# 890-2016-3036)

Working Paper: Discovering and Dreaming of the Ideal Possibilities for a

Healthy Workplace Response to Breast Cancer

Prepared by a subgroup of the Writing/Research Group:

Lucie Kocum, PhD

Danielle Mercer, MBA

Catherine Loughlin, PhD

Lynne Robinson, PhD

Nancy Elliott, LL.B

Jeanie Cockell, PhD

(c) 2016 PARTNERSHIP FOR A HEALTHY RESPONSE TO BREAST CANCER

If you have questions or feedback to provide the Partnership based on what you have read here, please email Nicole Webb, our Project and Communications Manager, at workwellness@smu.ca

Please also visit www.workwellnesslab.com for more information about the Partnership for a Healthy Workplace Response to Breast Cancer

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Twitter: @WorkWellnessLab and see #PartnershipForBreastCancer for related Tweets

Please cite this paper as follows:

American Psychological Association Style

Kocum, L., Mercer, D., Loughlin, C., Robinson, L., & Elliott, N. (2016). Discovering and dreaming of the ideal possibilities for a healthy workplace response to breast cancer (Partnership for a Healthy Workplace Response to Breast Cancer Working Paper No. 1). Retrieved from workwellnesslab.com/working-paper/

ACKNOWLEDGEMENTS

Thank-you to Members of the Steering Committee for the Workshop 1 discussions that formed the basis of this Working Paper. Thank-you to members of the Research/Writing Group, especially Dr. Tallal Younis, MBBCh. FACP. FRCP, and Lynn Gray, who contributed their comments, suggestions, and edits to earlier versions of this Working Paper. Thank-you to Jeanie Cockell for her appreciative guidance throughout this project from its inception, and for facilitating Workshop 1. Thank-you as well to Nicole Webb, our Project and Communications Manager, for preparing the presentation of images at the end of this document. Thank-you also to Alicia LaPierre for her technical assistance. A final thank-you to professor of English and wordsmith, Ariel Watson, PhD, for her contribution of the term “inter-stability” to capture the tensile strength inherent in an interconnected system of constituent people and practices. 

The Partnership for a Healthy Workplace Response to Breast Cancer is funded by the Canadian Institutes for Health Research, the Social Sciences and Humanities Research Council, and Saint Mary’s University, Halifax, Nova Scotia, Canada

EXECUTIVE SUMMARY

This Working Paper is the first written document produced by the Partnership for a Healthy Workplace Response to Breast Cancer (The Partnership). Members of thePartnership met for a day-long Workshop 1on July 20, 2016 at Saint Mary’s University, at which point they became familiar with each other and, using the technique of appreciative inquiry (AI), began discussions of the elements of a healthy workplace response to breast cancer.  The Partnership completed the “Discovery” and “Dream” phases of the AI process at Workshop 1. This Working Paper represents a distillation of the discussions during those phases. 

This document highlights much of the important content discussed during the discovery phase, and also presents connections made in reviewing the dream phase together with the images and provocative propositions produced during that discussion. We emphasise that this is not the only information to take into consideration in our design and delivery phases for Workshop 2, but it will provide some basis to continue our discussions.

Working Paper: Discovering and Dreaming of the Ideal Possibilities for a Healthy Workplace Response to Breast Cancer

Why Breast Cancer?

As the most common form of cancer among women between the ages of 20 and 59, breast cancer can be seen as the cancer of working women. With a survival rate of 88% (Canadian Cancer Society’s Steering Committee, 2015), more women diagnosed with breast cancer are surviving than ever before. However, they are falling through the cracks when it comes to employment. In the five years after initial treatment, breast cancer survivors suffer a dramatic drop in annual income and employment status, early retirement, or job loss (Chirikos, Russell-Jacobs, & Cantor, 2002; Canadian Breast Cancer Network, 2010). Comparing female and male workers with and without a history of cancer survivorship, female breast and gynecological cancer survivors have among the highest unemployment rates (de Boer, Taskila, Ojajarvi, van Dijk, & Verbeek, 2009). Moreover, the financial impact of breast cancer is devastating for many of the thousands of Canadian women diagnosed with this disease each year, and the nexus of this economic challenge is often the workplace and its associated psychological hazards, such as lack of benefits, accommodation, social support, control over tasks, hours, and schedules. A major reason for this discrepancy is lack of insight about return to work and workplace accommodation in the face of newly-diagnosed cancer.

A Healthy Workplace Response to Breast Cancer: How to Get There?

To achieve our overarching goal of identifying interventions that could be developed and tested in order to create new strategies for workplace accommodation of breast cancer, we formed the ‘Partnership for a Healthy Workplace Response to Breast Cancer’. Our partnership represents the coming together of breast cancer survivors, medical professionals, private sector companies, cancer advocacy groups, policy makers, research experts and trainees in industrial-organizational psychology, psychosocial oncology, disability management, and knowledge mobilization. Through our partnership, we ultimately hope to achieve three main goals in two years: 1) Co-creation of an effective partnership dialogue (e.g., connections through four workshops). 2) Knowledge co-generation (e.g., written documents). 3) Knowledge co-mobilization (e.g., dissemination of findings). To ensure we are effectively co-creating, co-generating, and co-mobilizing, we are using the method of appreciative inquiry as a technique to facilitate discussion and more importantly, as a way to ensure concrete movement towards our common goal.

To date, we have begun our co-creation of an effective partnership dialogue in our first workshop (Workshop 1) by completing the discovery and dream phases of appreciative inquiry (discussed below). In Workshop 2 we will complete the design phase whereby we will co-construct an intervention/set of interventions for organizations to use in achieving a healthy workplace response to breast cancer. The design phase will be achieved by creating intention to move forward and developing a concrete action plan. From there, we will complete the final phase of the 4-D cycle, delivery, by seeking out organizations who would be interested in participating in our healthy workplace response intervention(s).

The purpose of this Working Paper is to summarize the themes generated in our discovery and dream discussions in Workshop 1 in order to assist us in executing the design and delivery phases. The information distilled from Workshop 1 will assist us in understanding best practices, areas of improvement and ideal possibilities in a healthy workplace response to breast cancer.

Workshop 1: Discovering and Dreaming

Our first workshop allowed us to establish rapport with each other, to present and discuss the governance structure, and, most importantly, to generate discussion and knowledge about a healthy workplace response to breast cancer. (See Table 1 for the list of Workshop 1 participants.) To ensure we were properly implementing appreciative inquiry, members were formally trained and our workshop was guided by a consultant (i.e., Cockell McArthur-Blair Consulting). Our focus was to complete the discovery and dream phases of the 4-D cycle in an effort to come closer to our goal of developing a workplace intervention for women who have experienced breast cancer. The themes identified in Workshop 1 will clarify our goals for the design phase in Workshop 2.

Method and Analysis

Participants

Our 24-member Partnership Steering Committee participated in the day-long Workshop 1 discussion. See Table 1 for a complete list of participants, their roles, and the organizations represented. As per approved REB #16-582 protocol, none of the content of discussion reported here is associated with any one individual.

Appreciative Inquiry as a Tool for University-Community Collaboration

Appreciative inquiry is a collaborative learning strategy designed to achieve organizational change by finding out what is working well in a situation, focusing any discussion on how to make it better, and developing a more sustainable way forward. Simply put, appreciative inquiry is “about the co-evolutionary search for the best in people, their organizations, and the relevant world around them” (Cooperrider & Whitney, 2001, p. 4). Fundamental to appreciative inquiry is the movement away from a focus on the problem to a focus on the opportunity.

In using the method of appreciative inquiry, we examine what is working well (e.g., appreciative) by asking questions and telling stories (e.g., inquiry). It also ensures that all of our partners voices are heard, respected, and equally valued. There are many ways to use appreciative inquiry, but the most common method is called the 4-D cycle (Cooperrider, Whitney, & Stavros, 2003). The 4-D cycle includes four specific components that allow a focus on the positive by identifying what works as opposed to what is lacking. The four components are: Discovery (i.e., “appreciating, valuing the best of what is” – Cooperrider et al., 2003, p. 15), Dream (i.e., envisioning the possibilities – Cockell et al., 2012), Design (i.e., creating a future through strategy development – Cockell et al., 2012), and Destiny (i.e., “innovating what will be” – Cockell et al., 2012, p. 23).

The discovery portion of our workshop allowed partners to conduct narrative interviews in small groups by telling our best personal stories of healthy workplace responses to breast cancer (or other illnesses). Furthermore, we discussed what we valued most about ourselves and about the healthy workplace response in our stories, what the core life-giving factor was (i.e., how to create and sustain a healthy workplace response), and what are our three wishes for the future of a healthy workplace response to breast cancer. The second half of our workshop, the Dream phase, allowed us to imagine what a preferred healthy workplace response to breast cancer would look like. This was based on our interview stories and insights from the discovery section. In small groups, we created a visual image and a word image (see Figures 1 to 5). The visual image represented the future of workplaces responding to those women returning to work after breast cancer. The word image, also defined as a provocative proposition (e.g., vision statement) was a statement that supported the visual image and was meant to encourage action. We stated our provocative propositions in the present tense to demonstrate the preferred future based on what was already working and what was desired in the case of a healthy workplace response. In the following section, we discuss the major themes that arose in regards to the discovering and dreaming phases of the 4-D cycle in workshop one.

Thematic Analysis

Audio recordings of our workshop were transcribed with non-meaningful sounds (e.g. ‘um’) removed to facilitate comprehension (Kemper, McDowd, Metcaf, & Lui, 2008). Transcripts were coded using thematic analysis. Such an analysis is flexible, accessible and does not limit the analysis to a particular theoretical standpoint (Braun & Clarke, 2006). The co-authors approached the analysis by primarily focusing on the reality of the participant as opposed to attempting to understand how participants’ context shaped how they derived meaning from their experience (i.e. a ‘realist’ perspective, in Braun and Clarke’s terms). Preliminary analysis was carried out by the first and fourth authors. Each familiarized herself with the 389-page transcript and, for sake of efficiency and effectiveness in preparation for Workshop 2, decided that the team should focus on coding the Dream and Discovery discussions; coding of the remainder of the transcript can be undertaken by members of the Research/Writing Group at a later date. The authors then split into two teams, one for each the discovery (second, fourth, and fifth authors) and dream (first and third authors) sections. Each team generated an initial code list, examining their transcript section for units of meaning. Next, we read the entire list of codes, determining which codes fell within a common theme and exploring the relationships among and between the themes.  To assess the reliability of our coding, each team selected approximately 20% of its section and exchanged it and the coding scheme with the other team, who then applied the scheme. Initial agreement was approximately 72% on average, and discussion took place until consensus was reached. All authors with the exception of the last reviewed the analysis and checked that quotations within a theme were relatively similar and consistent with each other and relatively different from the quotations in other themes (conceptually distinct; Patton, 2002). This step helps to ensure high quality themes.

Themes

Discovery Phase Themes

Recall that during the discovery portion of Workshop 1, Steering Committee members were asked to conduct narrative interviews in small groups by telling our best personal stories of healthy workplace responses to breast cancer (or other illnesses or challenges). Furthermore, we discussed what we valued most about ourselves and about the healthy workplace response in our stories, what the core life-giving factor was (i.e., how to create and sustain a healthy workplace response), and what our three wishes are for the creation of a healthy workplace response to breast cancer. Of note is that many participants had not experienced breast cancer and were referring to healthy responses to other challenging situations and critical illnesses.

The following codes were drawn from the discovery portion of Workshop 1. More work needs to be done to distill themes from these codes. However, they do communicate as ideas that stood out as important during the discovery phase discussion.

Communication

Communication among the survivor/employee, co-workers, employer etc. was cited as an important component in the healthy workplace response stories shared. Specifically discussed was the importance of the workplace maintaining an attachment and connection with the survivor/affected employee throughout her cancer trajectory. Discussions also arose regarding communication challenges as they related to breast cancer (e.g., should we usethe term ‘survivor’?) and the survivor’s disclosure to the workplace, including to her employer and/or fellow co-workers, attitudes and responses to the disclosure, including helpful communication from the employer to the survivor.  Attachment, communication challenges, and disclosure were also important features of non-breast-cancer-related stories.

Return to Work (RTW)

Stories shared about a healthy workplace response to breast cancer contained a great deal of detail regarding aspects of the return to work (RTW) experience. We use RTW to refer to any part of the process involving employees who have taken time off work due to cancer (or other illnesses) and then returned. RTW refers to the survivor’s experience or to the employer’s needs. It can refer to accommodations but only in the RTW context, not in general.

Accommodations were discussed, including specific changes to workplace or job or job process to allow person to RTW, or inability to make needed accommodations. Stories mentioned a gradual return to work, and reference was made to having a system, process, definition of roles or an overall way of doing things. For some, RTW represented a return to normality, and some used volunteering as a way to RTW.

Common to both the healthy response to breast cancer and other challenging experiences was the notion ofRTW as team collaboration. The idea that the whole team/group is working together for a common cause and all are involved in the person returning. 

RTW was also associated with several negative experiences, such as fear and negative attitudes.

Support

Support was commonly mentioned in all the stories, whether or not they were breast cancer-related. We use support to refer to any type of social support (but not accommodations or benefits), whether informational, emotional, or practical. It was noted that support was needed for others as well as the breast cancer survivor or individual experiencing another critical illness or situation. Support was seen as a team collaboration in which several team members were engaged. In some stories a lack of support, or a failure to provide needed emotional or practical social support, was mentioned.

Survivor’s Functional Abilities Reduced

Stories pertaining to the breast cancer experience referred to physical and emotional effects of cancer and its treatment that had impact on the survivor’s ability to work at her former level. Stories not pertaining to breast cancer, specifically, referred to self-care.

Value and Valuing

Values refer to fundamental principles (such as fairness, respect, acceptance and trust within the workplace, authentic caring, inclusivity and connectedness amongst workers); valuing refers to aspects of work or survivors to which worth is ascribed. Values and valuing were mentioned in a variety of ways in participants’ stories, such as the value of the survivor to the workplace, referring to any aspect of the survivor or her experience that is of value to the employer. Moreover, this refers to the meaning or value working itself has for the survivor, including the sense of identity that can come from work In addition to the value of the survivor to the workplace, several key values of the workplace were identified. 

Workplace: Healthy Response

This section refers to a whole range of more specific healthy responses, aside from the general communication, RTW, and support

★     Balance Interests Balance of interests refers to either balancing the interests of the workplace and the survivor or to balancing the need of the survivor for privacy and the need for support), it might include other balancing of interests

★     Discrimination Issues Refers to descriptions of discrimination and ways to deal with it

★     Empathy: refers to the capacity of the survivor’s colleagues and manager to put themselves in the survivor’s place and understand issues from her perspective

★     Flexibility*** Flexibility here refers to a broad range of workplace flexibility, i.e. ADAPTING normal workplace policies/practices to the needs of the survivor, including RTW specifically when it refers to flexibility, andincluding any accommodations requiring adapting normal workplace practices/policies. "Informal way of helping" This is related as well to RTW.  There are also some specific aspects of flexibility we coded below. If it fitted under a specific flexibility code, we didn’t code under general flexibility

★     Flexibility: Part-time work***

★     Individualized response*** Each person's experience is unique and requires an individualized response

★     Patience Refers to employers, colleagues understanding and acceptance that the cancer trajectory requires patience on the part of those around the survivor

★     Resources for Companies Refers to any desired resources that companies/survivors could use as part of a healthy workplace.

★     Worklife Balance Refers to any aspect of workplace that helps employees maintain a healthy balance of work and life; take time for their own or their family's needs

★     Workplace: Unhealthy Response Although our goal was to identify what is working, what wasn’t working was also sometimes reported and we believe it is important to recognize this, even within an AI context. Two important subcodes for this were lack of benefits for survivor (both those with breast cancer and those with other problems) and lack of expertise in the workplace to deal with the issues resulting from the survivor’s cancer.

Dream Phase Themes

Recall that in the Dream phase members of the Steering Committee imagined what an ideal healthy workplace response to breast cancer would look like. This ideal was based on our interview stories and insights from the discovery section. In small groups, we created a visual image and a word image (see Appendix). The visual image represented the future of workplaces responding to those women returning to work after breast cancer. The word image, also defined as a provocative proposition (e.g., vision statement), was a statement that supported the visual image and was meant to encourage action. We stated our provocative propositions in the present tense to demonstrate the preferred based on what was already working and what was hoped for in our imagined healthy workplace response. The following four main themes were distilled from Steering Committee discussions, images, and provocative propositions generated during the Dream phase. These themes are best interpreted as characteristics of a healthy workplace response to breast cancer.

Authentic Caring

Authentic Caring captures the idea that caring defines the response to breast cancer, not that caring is some kind of policy imposed onto an organization. People care because they want to, and it is a part of the corporate culture, not because they are told that caring is important and that they have to care.

Hospitality/Anticipatory Empathy

These are uplifting gestures or acts. Hospitality/Anticipatory Empathy is distinct from an individualized response. It is projecting what the person might need/like based on their personality and/or preferences and offering it pre-emptively. A good example of hospitality/anticipatory empathy in the workshop was the glass of water example. When asked, most people refuse a glass of water. When it is placed beside them, even after having refused it, most people drink. Therefore, the individual with breast cancer may refuse offers of attention that show the workplace cares, but kind gestures are actually appreciated.

Individualized/Flexible

This theme captures that the healthy return-to-work/stay-at-work response is not a "one size fits all" approach. Responses need to be flexible and tailored to individual needs.

Inter-Stability in the System

Inter-stabilityin the system is like a spider web or a net. There is tensile strength from inter-connection of system constituents that upholds the whole system of people and practices. The idea is that this inter-stabilityallows for the individual with breast cancer, as well as anyone else affected, to be supported and not derailed by the illness.

There are three sub-themes under inter-stabilityin the system:

1. Inter-Stability in the System: Established Process Defines Culture

This sub-theme captures the idea that inter-stability  of the system is the result of an established process for responding to a critical illness at work. The established process sets the norm and people related to each other according to this established norm. Our processes reflect our values.

2. Inter-Stability in the System: Everyone Supported

The everyone supported sub-theme captures the idea that more people are affected by breast cancer than just the individual diagnosed with this critical illness. The interstable system provides support for everyone.

3. Inter-stability in the System: Individual in Context

The individual in context sub-theme captures the idea that the individual with breast cancer exists within a larger system.

Workshop 2: Design and Delivery

Workshop 2 is a critical meeting for the Partnership. Using Workshop 1 as a starting point, and contributing our expertise, lived experience, and knowledge from our position in the system that gives rise to the workplace response to breast cancer, we will complete the design and destiny phases of this project. We will co-construct an intervention or set of interventions for organizations to use in achieving a healthy workplace response to breast cancer and we will develop a concrete action plan for carrying out the intervention(s). We will also complete the final phase of the 4-D cycle, Delivery, by identifying organizations who might be interested in participating in our healthy workplace response intervention(s).

References

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. doi: 110.1191/1478088706qp1478088063oa

Canadian Breast Cancer Network. (2010). Breast cancer: Economic impact and labour force re-entry. Retrieved from http://www.cbcn.ca/documents/Labour_Force_Re=Entry_Report_ENG_CBCN_2010.pdf

Canadian Cancer Society’s Steering Committee. (2015). Canadian cancer statistics.

Toronto: Canadian Cancer Society.

Chirikos, T. N., Russell-Jacobs, A., & Cantor, A. B. (2002). Indirect economic effects of

long-term breast cancer survival. Cancer Practice, 10, 248-255.

Cockell, J., McArthur-Blair, J., Schiller, M. (2012). Appreciative inquiry in higher education: A transformative force. San Francisco, CA: John Wiley & Sons Inc.

Cooperrider, D.L., & Whitney, D. (2001). A positive revolution in change:

Appreciative inquiry. 1-36.

Cooperrider, D.L., Whitney, D., Stavros, J.M. (2003). Appreciative inquiry handbook. Bedford Heights, OH: Lakeshore Communications Inc.

de Boer A, Taskila T, Ojajarvi A, van Dijk F, Verbeek J. (2009). Cancer survivors and

unemployment: a meta-analysis and meta-regression. JAMA, 301, 753-762.

Kemper, S., McDowd, J., Metcaf, K., & Lui, C. (2008). Young and older adults’ reading of distracters. Education Gerontology, 34(6), 489-502. doi: 410.1080/03601270701835858

Patton, M. K. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks:CA: SAGE.

Steering Committee Members Present at Workshop 1

Organization Partner/Collaborator Title Partnership Role

BC Cancer Agency

Maureen Parkinson

Vocational Rehabilitation Counsellor

Practitioner Collaborator

 

Breast Cancer Action NS (BCANS)

Barb Thompson

Volunteer (Former Development Officer/Executive Director)

Collaborator (non-academic)

 

Canadian Cancer Society

Helle Haven Achurch

Program and Services Senior Manager

Partner

 

Cancer Care Nova Scotia (CCNS)

Meg McCallum

Provincial Manager of Education and Patient Navigation

Partner

 

Dalhousie University

Dr. Lynne Robinson

Associate Professor

Co-Investigator

 

Dalhousie University

Robin Urquhart

Associate Professor

Undefined

 

Dalhousie University

Dr. Tallal Younis

Medical Oncologist & Associate Professor

Collaborator

 

Kent

Jo-Anna McLoughlin

CDMP- Disability Manager

Kent Head Office

Partner

 

Massage Therapy

Lynn Gray

Massage Therapist

Collaborator (non-academic)

 

McGill University

Dr. Christine Maheu

Associate Professor

Academic Collaborator

 

National Institute of Disability Management and Research (NIDMAR)

Joyce Gravelle

Assistant Executive Director

Partner

 

National Institute of Disability Management and Research (NIDMAR)

Wolfgang Zimmerman

Executive Director

Partner

 

Nova Scotia Health Research Foundation (NSHRF)

George Collier

Manager, REAL Knowledge Program

KT Collaborator

 

Nova Scotia Health Research Foundation (NSHRF)

Julia Kontak

Research Associate

KT Collaborator

 

Nova Scotia Union of Public Employees (NSUPE)

Sally Christie

Nova Scotia Union of Public Employees (NSUPE) Representative

Partner

 

Nova Scotia Union of Public Employees (NSUPE)

Nancy Elliott

Lawyer and Business Agent

Partner

 

Saint Mary's University

Sarah Kehoe

Graduate Student

Collaborator

 

Saint Mary's University

Dr. Lucie Kocum

Project Director

Principal Investigator

 

Saint Mary's University

Alicia LaPierre

Research Assistant, Junior Collaborator

 

Saint Mary's University

Dr. Catherine Loughlin

Associate Dean Research and Knowledge Mobilization

Co-Investigator

 

Saint Mary's University

Danielle Mercer

Research Assistant, Senior Collaborator

 

Sun Life Financial

Marlene Grace

Director, Group Disability - Atlantic Region

Partner

 

Willow Esthetics Boutique

Michelle Carter

Small Business Owner

Partner

 

Young Adult Cancer Canada (YACC)

Karine Chalifour

Program Director

Partner

 

We welcome feedback on the working paper, please e-mail us at workwellness@smu.ca or alternatively fill out the form below.

 

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