
==== Front
Support Care Cancer
Support Care Cancer
Supportive Care in Cancer
0941-4355
1433-7339
Springer Berlin Heidelberg Berlin/Heidelberg

39261318
8848
10.1007/s00520-024-08848-x
Research
Co-creating a yoga program for women diagnosed with gynecologic cancer: a consensus study
Price Jenson 1
Harris Cheryl 2
Praamsma Naomi 3
Brunet Jennifer jennifer.brunet@uottawa.ca

124
1 https://ror.org/03c4mmv16 grid.28046.38 0000 0001 2182 2255 School of Human Kinetics, University of Ottawa, 125 University Private, Montpetit Hall, Room 339, Ottawa, ON K1N 6N5 Canada
2 grid.412687.e 0000 0000 9606 5108 Cancer Therapeutics Program, Ottawa Hospital Research Institute, The Ottawa Hospital, Ottawa, ON Canada
3 https://ror.org/01z89mt14 grid.419945.4 0000 0004 0500 0704 Ottawa Regional Cancer Foundation, Ottawa, ON Canada
4 grid.440136.4 0000 0004 0377 6656 Institut du Savoir Montfort, Hôpital Montfort, Ottawa, ON Canada
12 9 2024
12 9 2024
2024
32 10 65622 11 2023
31 8 2024
© The Author(s) 2024
2024
https://creativecommons.org/licenses/by-nc-nd/4.0/ Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.
Purpose

Yoga may be uniquely suited to address bio-psycho-social concerns among adults with gynecologic cancer because it can be tailored to individuals’ needs and can help shift focus inward towards self-reflection, body appreciation, and gratitude. This study describes the collaborative process guided by the Knowledge-to-Action framework used to develop a yoga program for adults diagnosed with gynecologic cancer and inform a feasibility trial.

Methods

In 3 collaborative phases, yoga instructors and women diagnosed with gynecologic cancer formulated recommendations for a yoga program and evaluated the co-created program.

Results

The program proposed is 12 weeks in length and offers two 60-min group-based Hatha yoga classes/week to five to seven participants/class, online or in person, with optional supplemental features. Overall, participants deemed the co-created program and instructor guidebook to be reflective of their needs and preferences, though they provided feedback to refine the compatibility, performability, accessibility, risk precautions, and value of the program as well as the instructor guidebook.

Conclusion

The feasibility, acceptability, and benefits of the program are being assessed in an ongoing feasibility trial. If deemed feasible and acceptable, and the potential for enhancing patient-reported outcomes is observed, further investigation will focus on larger-scale trials to determine its value for broader implementation.

Supplementary Information

The online version contains supplementary material available at 10.1007/s00520-024-08848-x.

Keywords

Co-creation
Oncology
Mind–body
Quality of life
Psychosocial
Yoga
Survivorship
Social Sciences and Humanities Research Council of Canada892-2021-1002 892-2021-1002 Praamsma Naomi Brunet Jennifer issue-copyright-statement© Springer-Verlag GmbH Germany, part of Springer Nature 2024
==== Body
pmcIntroduction

Over 1.5 million Canadians are living with and beyond cancer, most of whom are living long term (i.e., 5–25 years after their diagnosis [1]), which has implications for supportive care services. Every year, 12,000 adults will be diagnosed with gynecologic cancer (i.e., vulvar, vaginal, ovarian, cervical, endometrial/uterine) in Canada, accounting for more than 11% of new cancer diagnoses [2]. Women diagnosed with gynecologic cancer report poorer quality of life (QoL) than published norms from the general population [3–6]; yet, little research has explored means of improving their QoL, a key patient-reported outcome encompassing physical, social, emotional, psychological, and cognitive well-being [7, 8]. Moreover, women diagnosed with gynecologic cancer report reduced connection to their body [9], disrupted self-perceptions [10], and concerns about others’ responses to their bodies [11], in addition to reduced feelings of femininity and sexual energy/libido [12], all of which can further reduce QoL. Indeed, women diagnosed with gynecologic cancer report enduring side effects related to sexual health and body image as influential for QoL [13–15]. Therefore, supportive care services that support bio-psycho-social processes that contribute to improving adults’ relationship with their bodies after a gynecologic cancer diagnosis are necessary to promote QoL into survivorship.

Yoga is a form of leisure activity that may be uniquely suited to promote QoL by supporting positive thoughts, feelings, and behaviors about one’s physical function, appearance, and social interactions [16]. Yoga, in the modern-day Western setting, is often focused on moving, stretching, and balancing through a series of poses (asanas), awareness of breath (breathwork; pranayama), and cultivating the connection between the mind and body (meditation; dhyana) [17, 18]. A recent meta-synthesis of qualitative articles exploring women’s experiences participating in yoga after a cancer diagnosis suggests the physical poses in yoga facilitate the “journey inward” by encouraging a focus on proprioceptive feedback from the body, breathwork can provide a foundation for the calming of the mind (e.g., by observing the breath as it is, changing the breath in tandem with a count, or attaching breath to imagery), and meditation can help meet present-moment experiences with openness, acceptance, and nonjudgment [19]. Women without a history of disease report reduced self-objectification and body surveillance and increased mindfulness, self-compassion, body appreciation, body image flexibility, perceptions of competence, and positive affective states (e.g., joy, desire, pleasure) after practicing yoga [16]. Many of these benefits are also reported by women diagnosed with cancer; yoga can help women manage symptoms and side effects, rediscover strength and physical abilities, embrace a positive outlook and relationship with themselves, develop strategies for coping with stressors, foster social connections and support, and become more attentive and mindful [19].

Despite the benefits of yoga, existing programs1 have several limitations, particularly in terms of program design and delivery, that diminish their potential. A meta-synthesis of 16 qualitative studies investigating women’s preferences for yoga programs following a cancer diagnosis reveals participants frequently experience challenges related to the program structure, performance, compatibility, sensory environment, accessibility, risk, and enjoyment [20]. Thus, existing programs may not meet the wants and needs of women diagnosed with gynecologic cancer. In addition, few programs have been developed collaboratively with key persons fundamental to program delivery (i.e., yoga instructors), which could promote better instruction practices. Yoga instructors are in a unique position to contribute to participants’ body-related experiences during yoga [21], either positively or negatively via their leadership, verbal commentary about weight and body shape, social support, approach to creating a culture of inclusion, and teasing. One approach to overcome these limitations is to collaborate with yoga instructors and adults diagnosed with gynecologic cancer to co-create a yoga program that takes into consideration the wants, needs, and preferences of both groups (i.e., intended program users).

Typically, research co-creation is considered a collaborative process between academic (typically researchers) and non-academic members, wherein the goal is to co-create knowledge (e.g., educational materials, training programs, toolkits and guides, programs) rather than only interacting during the dissemination of the research results [22, 23]. There are several approaches to incorporating non-academic members into the research process. The International Association for Public Participation spectrum of public participation [24] suggests individuals can participate in research at different degrees ranging from (1) inform (i.e., provide the public with balanced and objective information to assist them in understanding the research context, objectives, and implications), (2) consult (i.e., obtain public feedback on analysis, methodologies, and potential program components), (3) involve (i.e., work directly with the public throughout the process to ensure that their concerns, aspirations, and insights are consistently understood and considered), (4) collaborate (i.e., partner with the public in each aspect of the research process, including the development of research questions, methodologies, and program components), to (5) empower (i.e., place final decision-making authority in the hands of the public regarding key aspects of the research and program implementation). The relationship between academic and non-academic members in the involve, collaborate, and empower phases of the continuum are sustained for a period of time with roles and responsibilities between members being more fluid. Consequently, the knowledge that is co-created through these collaborative efforts is more likely to be contextually relevant and suitable for intended users of the knowledge (e.g., adults diagnosed with gynecologic cancer and yoga instructors).

Project description

Guided by the Knowledge-to-Action (KTA) framework [25], a yoga program and instructor guidebook were developed using principles of co-creation with intended program users. The KTA framework aims to bridge the know–do gap [25], ensuring research is utilized by appropriate and/or intended users to improve health delivery systems and health outcomes [26, 27]. The KTA framework comprises two distinct but related components, knowledge creation (i.e., the knowledge funnel) and moving knowledge into action (i.e., the action cycle). Both components involve several overlapping phases that can be iterative. The knowledge funnel represents the process of refining knowledge, whereas the action cycle outlines the steps needed to apply knowledge in practice, which may occur sequentially or simultaneously. The action cycle phases include: (1) identify a problem that needs addressing and identify, review, and select the knowledge or research relevant to addressing the problem, (2) adapt the identified knowledge or research to the local context, (3) assess barriers to using the knowledge, (4) select, tailor, and implement interventions to promote the use of knowledge, (5) monitor knowledge use, (6) evaluate the outcomes of using the knowledge, and (7) sustain ongoing knowledge use.

The purpose of this project was for the research team (JP, JB, CH) to partner with non-academics, specifically a community organization (the Ottawa Regional Cancer Foundation; ORCF) that offers supportive care services, resources, and programs to cancer patients and survivors to collaborate with (1) adults diagnosed with gynecologic cancer and (2) yoga instructors to (a) co-create a sustainable yoga program for adults diagnosed with gynecologic cancer with an accompanying instructor guidebook, and (b) inform the development of a feasibility trial to assess the program’s feasibility (i.e., practicality and achievability), acceptability (i.e., relevance and appropriateness), and benefits (i.e., positive outcomes). A community-based integrative knowledge mobilization approach [28], guided by the KTA framework, was used to ensure that non-academic partners, including the community organization (i.e., ORCF) and intended program users (i.e., yoga instructors, adults diagnosed with gynecologic cancer), were involved throughout the research process to ensure the outputs suit each group, as well as to ensure future uptake and feasibility of the co-created program.

The specific aim of this collaborative project was to build a yoga program for adults diagnosed with gynecologic cancer based on evidence-based principles that can undergo further testing in efficacy trials (to test the effects of the program under optimal conditions) and in effectiveness trials (to test the effects of the program under real-world conditions) to build the case for implementation across organizations that offer supportive care services. The evidence-based approach means the best available research evidence, clinical practice and service delivery expertise, and patient values and lived experiences were all important considerations in developing the program to achieve optimal outcomes [29]. The goal was to yield a program based on outcome-oriented research that would be acceptable and relevant to intended program users. In this manuscript, we detail the process of developing this complex program. The intention is to assist others interested in co-creating an intervention, program, service, or strategy to address local challenges.

Materials and methods

Study design

The overall project was divided into 3 distinct phases (see Fig. 1). Phase 1 focused on collaboration with an advisory board, Phase 2 focused on collaboration with intended program users during a consensus panel meeting, and Phase 3 focused on evaluating the program proposed through focus groups. Within this approach, Phase 2 and Phase 3 employed a consensus panel meeting methodology [30] and a phenomenology methodology [31], respectively. This approach and methodologies centered on the community organization and intended program users’ involvement throughout the project. Throughout the process of co-creation, the research team actively collaborated on planning, creation, and assessment decisions with the community organization and prioritized intended program user feedback on the design and delivery of the program. The guidance for reporting of patient and public involvement in health and social care research (GRIPP2) checklist was adhered to in the preparation of this manuscript [32].Fig. 1 Overview of the 3-phase co-creation process

Of note, incorporating lived experience perspectives from adults of all gender expressions diagnosed with gynecologic cancer (e.g., women, non-binary persons, transgender men) from the outset of the process may facilitate more inclusive programs for all individuals in the community. Thus, inclusive language was used, and inclusive and diverse research materials were developed. One example is the development and distribution of recruitment letters and brochures that use gender-neutral language. This approach reflects the research team and community organization’s commitment to creating a supportive and accessible environment for everyone affected by this type of cancer. However, data collected from participants who self-selected to participate reveals they exclusively identified as cis-gender women. Therefore, findings may be more likely to align with the lived experience of women; the results and discussion reflect this in the terminology used (i.e., women diagnosed with gynecologic cancer).

Researcher and community organization characteristics

The research team, comprising the 3 authors and 1 undergraduate student, acknowledged and reflected on their preconceptions, life experiences, and knowledge as they collected and interpreted the data. The members of the research team all identify as women, have not had cancer, and have varying levels of experience in qualitative research, physical activity, and health promotion as well as supporting thriving after cancer diagnosis and treatment.

The ORCF describes its organization as the voice for cancer survivorship in Eastern Ontario (Canada). Their mission is to help people living with cancer by providing local residents with increased access to person-centered care through the delivery of patient support, innovative cancer research, and clinical trials. The ORCF is classified as a non-for-profit charity; in 2022, they raised $4.7 million to support their organization’s initiatives. The ORCF delivers over 35 programs with over 1500 visits between June 2022 and April 2023 within the Ottawa (Ontario, Canada) community. Throughout the project, the research team collaborated with 3 individuals who worked at the ORCF due to staff turnover, each with extensive experience in healthcare, health, and wellness. Details regarding the researchers’ and ORCF employee descriptions, including demographic information and relevant experiences, can be found in the Online Resource (Table S1).

Phase 1: Engage in knowledge exchange to prepare for co-creation

Description and aims

The knowledge inquiry and synthesis phase of the KTA framework involved a patient and public advisory board. From November 2021 to February 2022, 4 monthly online meetings were held with an advisory board to discuss relevant literature [19, 20], establish desired outcomes for the co-created yoga program, review consensus meeting materials, and assess data collection approaches. The goal was to ensure the research team understood the experiences and perspectives of the community organization and intended program users while developing the materials used in Phase 2 and Phase 3.

Sampling and participant description for advisory board

The advisory board during Phase 1 consisted of two women diagnosed with gynecologic cancer, two yoga instructors, two healthcare professionals (CH, ORCF Collaborator 2), two researchers (JP, JB), and one junior trainee (AT). The two women diagnosed with gynecologic cancer were contacted after having been found ineligible to participate in a previous study conducted by the authors but had expressed interest in supporting future research on the topic area. The yoga instructors were contacted after having been identified by participants in a previous study conducted by the authors as individuals who would be interested in sharing their knowledge. JP initiated contacted in October 2021 and invited them to join the board. The healthcare professionals, whom JP and JB knew already, were initially approached in March 2021 to collaborate on the grant application to support this project. The junior trainee was invited to work on the project as part of a program at the University of Ottawa to support undergraduate students to gain experience in research.

Procedures

After the members of the advisory board were identified, four 1-h meetings were held via Microsoft Teams at a mutually agreed upon time that worked for all members. When members were to provide feedback on documents, these were provided 2 weeks prior to the scheduled meeting to allow enough time to adequately review the wording, topics, and presentation of the documents. Meeting agendas were sent 1 week prior to each meeting and reminder emails (including meeting links) were sent (as per board member request) 10 min before the scheduled start of the meeting. The meetings were chaired by JP, and AT took meeting notes. Table 1 provides an overview of each meeting’s purpose and the knowledge shared during the meeting. Table 1 Advisory board meeting topics and knowledge shared

Meeting number	Purpose	Knowledge shared	
Meeting 1—November 2021	• Provide an overview of the project

• Review roles and responsibilities

• Share reasons for participating in the advisory board

	Reasons for participating included:

• Sharing their cancer experiences

• Improving the lives of fellow survivors

• Bringing awareness to gynecologic cancers

• Helping build a meaningful and universal program for gynecologic cancer survivors

	
Meeting 2—December 2021	• Explore desired outcomes of a yoga program

• Explore possible ways to facilitate them in a yoga program

	Desired outcomes included improving wellbeing:

• Physical (e.g., managing symptoms and fatigue, improving physical strength and flexibility, decreasing body aches)

• Psychological (e.g., coping with stress and anxiety, emotional stability, confidence, body image, sexuality)

• Social (e.g., increasing sense of community and connection with others)

	
Meeting 3—January 2022	• Review the resources, materials, and agenda for Phase 2 (i.e., the consensus panel meeting)	Members highlighted the need to:

• Present information in an unbiased manner (i.e., the research team is not directing participants towards a specific outcome)

• Condense information into infographics and use concise language that would help keep participants focused on the purpose and objectives of the consensus panel meeting

• Provide participants with a video to highlight common symptoms and treatment for gynecologic cancers so that the yoga instructors in attendance would have a stronger understanding of the needs of women diagnosed with gynecologic cancer

	
Meeting 4—February 2022	• Review data collection approaches that would be used in Phase 3 (i.e., the focus groups)	Members provided feedback on:

• Wording of questions

• Flow of questions

• Questions to add

	

Phase 2: Co-creation of a yoga program

Description and aims

In March 2022, a 1-day virtual consensus panel meeting with intended program users (i.e., adults diagnosed with gynecologic cancer, yoga instructors) and researchers was held to address the second action phase of the KTA framework (adapt knowledge to the local context). The outcome of the phase was to ensure intended program users’ voices and experiences guided decisions to ensure a suitable program was created to support their needs and circumstances.

Sampling for virtual consensus panel meeting

Participants were recruited from across Canada during January and February 2022. Adults diagnosed with gynecologic cancer and yoga instructors were recruited through self-referral via recruitment posters distributed around Ottawa, postings on social media and in registries, and word of mouth. Adults diagnosed with gynecologic cancer were eligible if they were ≥ 18 years of age, diagnosed with stages I–III gynecologic cancer, had no prior cancer diagnosis, participated in yoga ≥ 1/week during a typical month, and were able to read/understand English. Yoga instructors were eligible if they were ≥ 18 years of age, had ≥ 1-year experience instructing yoga, actively taught yoga ≥ 1/week in a typical month, and were able to read/understand English. Researchers were identified by JP and JB and invited by email to participate. They were eligible if they conducted studies on yoga or related activities (e.g., mindfulness) preferably in cancer populations, published > 1 article in a peer-reviewed journal on the topic of yoga in the last 10 years, and were able to read/understand English.

Procedures for virtual consensus panel meeting

Adults diagnosed with gynecologic cancer and yoga instructors were screened for eligibility by phone, provided detailed information about the study, and if eligible and interested, provided verbal consent at the end of the screening call. One week prior to the consensus panel meeting, participants were emailed a link to SurveyMonkey and asked to complete a brief survey to collect background information. Adults diagnosed with gynecologic cancer (n = 8) were asked to self-report sociodemographic (i.e., age, gender, marital status, education, income, employment status, number of children, ethnicity) and medical (i.e., time since diagnosis, cancer type, cancer stage, treatment types, self-report physical and mental wellbeing) information. Yoga instructors (n = 13) were asked to self-report sociodemographic information (i.e., age, gender, marital status, education, household income, employment status, ethnicity) and instructional experience (i.e., years instructing, training, average number of classes taught in a typical week, average length of classes taught in a typical week). Tables 2 and 3 summarize adults diagnosed with gynecologic cancer and yoga instructors’ characteristics, respectively. One week prior to the consensus panel meeting, all participants were granted access to a Microsoft OneDrive folder that contained the consensus panel meeting agenda, information sheets, and recording sheets. While they were encouraged to review the materials beforehand, it was not mandatory and whether participants had done so was not verified. Table 2 Sociodemographic and medical characteristics of women diagnosed with gynecologic cancer who participated in the co-creation of the yoga program (n = 7)

Variables	Descriptives	
Age (years), M ± SD, range	47.1 ± 13.4, 32–66	
Woman, % (n)	100 (7)	
Married or common law, % (n)	71.4 (5)	
Completed at least university/college, % (n)	71.4 (5)	
Household income > 75,000 CAD, % (n)	71.4 (5)	
Full-time employment status, % (n)	28.5 (2)	
Children	
  Have children, % (n)	42.8 (3)	
  Number of children, M ± SD, range	2.3 ± 0.5, 2–3	
  Age of children, M ± SD, range	22.8 ± 7.7, 11–32	
Ethnicity	
  White	100 (7)	
Co-morbid physical conditions, % (n)	71.4 (5)	
Co-morbid psychological conditions, % (n)	28.5 (2)	
Years since diagnosis, M ± SD, range	3.3 ± 3.9, 0.75–12	
Cancer type	
  Ovarian, % (n)	28.5 (2)	
  Cervical, % (n)	28.5 (2)	
  Endometrial/uterine, % (n)	42.8 (3)	
Cancer stage	
  I, % (n)	57.1 (4)	
  III, % (n)	42.8 (3)	
Treatments	
  Surgery, % (n)	100 (7)	
  Chemotherapy, % (n)	57.1 (4)	
  Radiation therapy, % (n)	28.5 (2)	
Physical wellbeing (range, 1–5), M ± SD, range	3.4 ± 0.5, 3–4	
Mental wellbeing (range, 1–5), M ± SD, range	3.2 ± 0.7, 2–4	
1 participant did not complete the survey; descriptives are calculated using 7 as the denominator

M mean, SD standard deviation

Table 3 Sociodemographic and yoga teaching characteristics of yoga instructors who participated in the co-creation of the yoga program (n = 13)

Variables	Descriptives	
Age (years), M ± SD, range	50 ± 11.26; 28–67	
Woman, % (n)	100 (13)	
Married or common law, % (n)	76.9 (10)	
Completed at least university/college, % (n)	84.6 (11)	
Household income > 75,000 CAD, % (n)	53.8 (7)	
Full-time employment status, % (n)	46.1 (6)	
Ethnicity, % (n)	7.6%(1)	
  White	84.6(11)	
  Black	7.6 (1)	
  Prefer not to say	7.6 (1)	
Years instructing, M ± SD, range	11 ± 6.9, 3–24	
Styles of yoga trained in % (n)	
  Hatha	84.6 (11)	
  Iyengar	7.6 (1)	
  Vinyasa	61.5 (8)	
  Yin﻿	61.5 (8)	
  Restorative	61.5 (8)	
  Sivananda	7.6 (1)	
  Adaptive	7.6 (1)	
  YogaFit	7.6 (1)	
  Trauma-sensitive	7.6 (1)	
  Chair	7.6 (1)	
  Mantra	7.6 (1)	
  Kirtan	7.6 (1)	
  Nada Yoga	7.6 (1)	
Classes per week instructed, M ± SD, range	7.2 ± 7.7, 2–28	
Average length of class instructed (minutes), M ± SD, range	67.6 ± 15.2, 40–90	
M mean, SD standard deviation

The consensus panel meeting was scheduled from 9:00 a.m. to 5:15 p.m. Eastern Standard Time, with scheduled morning, lunch, and afternoon breaks, and 50 min at the end of the day to account for extra discussion needed; the meeting concluded at 4:45 p.m. The meeting was audio- and video-recorded. After welcoming participants, JP summarized existing literature [33–36] to facilitate planned discussions and activities. Program co-creation was facilitated by activities led by JP based on recommendations for the conduct of consensus studies [37]. Participants took part in group discussions with all participants, as well as smaller (i.e., 6–7 participants) panel discussions on 5 main topics: (1) program structure, (2) inclusive language, (3) program content, (4) supplemental program features, and (5) outcomes to assess in the feasibility trial (see Table 4 for overview). For each topic, JP briefly presented an introduction (e.g., purpose and goal of session, explanation of the topic, previous research), highlighted questions for discussion, and then moved participants into pre-assigned breakout rooms to discuss for 25 min. To facilitate smaller panel discussions, 3 breakout rooms were created; each had 2–3 women diagnosed with gynecologic cancer, 3–4 yoga instructors, and 1 researcher.2 Each group had a designated discussion leader and a member to record the discussion on the provided recording sheet. Participants were assigned to groups based on age ranges (i.e., 28–40, 47–53, 54–66 years of age) to help foster common ground. Panel groups stayed the same throughout the day. After each panel discussion, participants reconvened in the main meeting room and a representative from each panel presented their responses. Following this, a general discussion took place where any participant could comment on or add to the information shared. When there were contradicting ideas or preferences, a poll was conducted to attempt to reach a consensus by > 80% of participants [37]. While JP was facilitating the meeting, JB and AT took notes of discussions, disagreements, and participant interactions. Table 4 Description of topics covered during the consensus panel meeting

Section	Purpose	Example questions asked	
Program structure	Provide opinions on the ideal structure of the program (i.e., length, duration, dosage, location, style, mode of delivery, yoga type)	• What is the ideal length (i.e., number of weeks) for a yoga program?

• What is the ideal way to attend a class (i.e., in person, virtually, hybrid)?

• What is the ideal time to offer a yoga program (e.g., on treatment, post-treatment, mixed, etc.)?

	
Inclusive and accessible language	Identify inclusive language and approaches as well as potential prompts	• What are some inclusive and accessible phrases to help transition participants into poses?

• What are some inclusive and accessible phrases for offering modifications?

• What are some inclusive and accessible methods or phrases for guiding a breath practice?

	
Program content	Identify physical postures and modifications (Asanas), breathing exercises (Pranayama), and meditations (Dhyana) to include in a base class	• Are there any modifications to certain poses that should be built into the program?

• Are there any poses that should be worked up to (either over the course of a class or over the course of the program)?

	
Supplemental program features	Brainstorm additional features that could be incorporated into the program to enhance participant experience	• What is a supplemental program feature that would be helpful to add to this yoga program?

• How would this feature work within the program?

• Why would this feature be beneficial or worthwhile for participants?

	
Outcomes to assess	Comment on outcomes for gauging the benefits of the program by ranking the importance of physical, psychological, and social outcomes	• Please identify the top 10 potential outcomes and benefits of the yoga program

• Please rank the potential outcomes and benefits in order of importance, with 1 as the most important

	

Synthesis and creation of program and instructor guidebook

The research team’s observations and notes, participants’ responses to polls, and participants’ recorded responses on the recording sheets were synthesized through a dynamic and iterative process. First, JP identified potential features of the program that had substantial agreement among participants (i.e., program length, class length, dose of classes). Second, JP identified potential features that did not have substantial agreement but were similar in nature and could potentially support the overall intention of the program; these elements were woven together (i.e., supplemental program features, inclusive and accessible language to use during classes). Third, JP made note of potential features that were shared during the meeting but that did not have an agreement or did not fit the program scope to inquire further about during focus groups. Fourth, JP established the protocol for the program proposed based on the previous steps. Fifth, JP drew on the mission of the ORCF to establish the purpose and scope of the instructor guidebook. Next, she identified the specific topics and procedures that needed to be covered in the guidebook to facilitate delivery of the program and created an outline that served as a framework for the instructor guidebook to organize the content. Then, she wrote the content of the instructor guidebook focusing on clear and concise writing while incorporating visuals and examples to encourage understanding and engagement with the content. Sixth, JP and JB engaged in an iterative process to refine the content of the instructor guidebook to prepare it for review.

Phase 3: Evaluate the co-created yoga program and instructor guidebook

Description and aims

In April 2022, a qualitative study was undertaken to evaluate the co-created program and accompanying instructor guidebook to address the next phases in the KTA framework (assess barriers/supports to knowledge use, tailor intervention). The goal was to ensure the co-created program and instructor guidebook reflected the discussions and decisions from the consensus panel meeting and adequately addressed the needs, preferences, and barriers of intended program users.

Sampling for focus groups

Approximately 4 weeks after the consensus panel meeting, all participants who had participated in the consensus panel meeting were emailed individually to collect their availability to participate in a focus group. Researchers were not invited to participate in this phase as they are not direct intended program users. Based on guidelines for conducting focus group research [38, 39], multiple focus groups were scheduled, each with only two–four participants to allow them adequate time to share their perspectives. The focus groups were composed exclusively of women diagnosed with gynecologic cancer or yoga instructors to allow for population-specific questions and discussions.

Procedures and data collection for focus groups

Participants were emailed a copy of the instructor guidebook 48 h prior to their focus group to review. Focus groups were conducted via Microsoft Teams to accommodate participants’ varying geographical locations and were audio- and video-recorded. For each focus group, JP greeted participants and briefly overviewed the proposed yoga program and instructor guidebook. A semi-structured focus group schedule (see Table 5) was used to guide the discussion. Supplemental probes were used as necessary to gather more in-depth information. Table 5 Purpose and questions asked during focus groups

Participants	Purpose	Example questions	
Yoga instructors	• Assessment of the (1) structure and features of the program and (2) instructor manual for guiding delivery of the program

• Support, training, and resources that would be required to deliver the program

	• What do you think of the length of the program, the duration of the sessions, and number of weekly sessions?

• What are your impressions of the layout of the program, including the hybrid model of delivery?

• Do you feel the manual provides enough context and background information for gynecologic cancer?

• What kind of support or resources do you think you need to deliver a program like this?

	
Women diagnosed with gynecologic cancer	• Assessment of the (1) structure and features of the program and (2) instructor manual for guiding delivery of the program

• Impressions of the usefulness and utility of a yoga program to address body image, sexual health perceptions, and their relationships with others

	• What do you think of the length of the program, the duration of the sessions, and number of weekly sessions?

• What are your impressions of the layout of the program, including the hybrid model of delivery?

• Do you feel the manual provides enough context and background information for gynecologic cancer?

• Is the program appealing to you and do you think it would be useful to you?

• What challenges do you see inhibiting or discouraging you from participating in a program like this?

	
Supplemental probes were used as necessary to gather more in-depth information

Data analysis

Quantitative data collected via the SurveyMonkey survey during Phase 2 were analyzed using descriptive statistics in IBM SPSS (Version 26). Audio recordings from the focus groups during Phase 3 were transcribed verbatim, with the video being used to confirm who was speaking, and uploaded into NVivo for deductive content analysis [40]. Then, JP (1) read each transcript to acquire an overall understanding of content relevant to the research aims, (2) read each transcript again while noting recurring viewpoints that could represent meaning units, (3) created a coding scheme to guide subsequent coding of meaning units based on existing literature and the research aims, (4) coded each transcript based on these meaning units, and (5) extracted condensed meaning units with regard to the context. Condensed meaning units related by meaning and/or content were merged and abstracted into themes. Then, JP and JB engaged in an iterative process to refine the themes and their presentation.

Trustworthiness

Several strategies were used to ensure the results were substantiated by the data collected. First, the overall study design of the project ensured the methods were adequate to address the research aims, the analyses chosen were in alignment with the research aims and qualitative approaches, and the lived experiences of intended program users guided the research process and took into consideration the community organization’s expectations (e.g., effective integration of the advisory board’s feedback). Second, JP engaged in an iterative process with JB acting as a “critical friend” to refine themes [41]. Specifically, JP consulted with JB to discuss, reflect, and refine the themes to ensure they adequately portrayed participants’ accounts. In addition, CH and NP critically reviewed the results to offer alternative interpretations of the data to reach a mutual agreement on the interpretation of data that embraces alternative interpretations. Third, the reporting of the results emphasizes transferability (i.e., thick descriptions of participants and results) and confirmability (i.e., direct quotations to justify the themes) [42].

Results

Focus group participants

Cancer survivors

Eight women diagnosed with gynecologic cancer provided informed consent to participate in this study and attended the consensus panel meeting; two did not participate in the focus groups. Online Resource Table S2 displays the individual characteristics of those who participated in the focus groups. All self-identified as a woman and were between the ages of 33 to 67 years (M = 44.6; SD = 14.5). The majority were in a committed relationship (i.e., married or common law; n = 3; 60.0%) and had a university/college education (n = 4; 80.0%). They were diagnosed, on average, 3.7 years prior to their participation in the study (range = 10 months–11.5 years). On a scale of 1 to 5, they rated their physical wellbeing as 3.2 (SD = 0.4) and their mental wellbeing as 3 (SD = 0.7) on average.

Yoga instructors

Thirteen yoga instructors provided informed consent to participate in this study and attended the consensus panel meeting; two did not participate in the focus groups. Online Resource Table S3 displays the individual characteristics of those who participated in the focus groups. All self-identified as a woman and between the ages of 29 to 68 years (M = 50.6; SD = 10.03). The majority were in a committed relationship (i.e., married or common law; n = 9; 81.8%) and had a university/college education (n = 10; 90.9%). They had been instructing for 3 to 24 years (M = 10.6; SD = 7.3), with the majority being trained in Hatha (n = 9; 81.8%), Vinyasa (n = 7; 63.6%), and/or Restorative (n = 6; 54.5%) styles. On average, they taught 6.4 classes/week (range = 2–28; SD = 7.6) for an average of 70.9 min/class (range = 60–90; SD = 13.5).

Program and instructor guidebook description3

Based on recommendations from the co-creation process, research indicating yoga can improve quality of life outcomes [19, 35, 36], and tenets of yoga philosophy [43], this program is centered on helping participants “thrive.” This is based on theoretical tenets from posttraumatic growth frameworks that suggest that with proper support, individuals can experience positive adaptation or growth as a result of struggling with adversity due to a major threat or trauma like cancer [44, 45]. Thriving after a gynecologic cancer diagnosis centers on how a person rewires their brain and body to experience growth around their experiences, emotions, thoughts, and actions. The instructor(s) delivering the program are encouraged to deliver each class in a manner that can help participants find new meanings, gain new strengths, and develop new perspectives. They can do so by offering choices (e.g., pre-emptively offering different levels of an asana to find what feels comfortable and avoiding glorifying the “full expression” of an asana), avoiding qualifiers (e.g., providing a positive and encouraging suggestion to support participants to practice at their own pace/level and avoiding telling participants what they “should” look like in an asana), and empowering introspection (e.g., asking participants to notice their bodies and sensations and move in a manner appropriate for them).

The co-creation process resulted in a 12-week program and instructor guidebook to assist with training yoga instructors to deliver the program and facilitate fidelity during the implementation of the program. The program proposed is designed to offer two 60-min Hatha yoga classes/week to a group of five to seven participants/class. It would be a flexible bi-modal program that offers online and in-person practice opportunities to support accessibility and meet participants’ needs. However, participants are asked to attend the first 2 weeks of the program in-person to allow the instructor to modify and tailor the classes to each participant to better support safety. The program also includes hybrid supplemental features: group discussions after class, journaling, and an online database of short videos to support at-home practice. In addition, the program includes an intake form and a brief 1-on-1 virtual meeting between the instructor and each participant up to 2 weeks before the start of the program to discuss physical capabilities and expectations for the program. See Table 6 for an overview of the class structure. Table 6 Overview of class structure in the co-created yoga program

Activities	Descriptions	Timings	
Arrival	Time for the instructor to make the class environment welcoming and connect with participants as they transition into the class	5 min	
Warm-up	A structured sequence of movements intended to help a participant center themselves in the present, elevate their heart rate, and prepare their mind and body to fully engage in the class by tuning into their body, heart rate, breathing, and energy level; includes a breath (pranayama) practice	15 min	
Sequence 1	A structured sequence of movements intended to help a participant connect their movement with their breath as they engage in dynamic movement	10 min	
Sequence 2	A structured sequence of more vigorous movements intended to help a participant connect their movement with their breath and engage multiple muscle groups as they flow through a series of asanas	15 min	
Restoration	A structured sequence of movements intended to help a participant regulate their breathing and heart rate and begin the calming process to prepare to transition out of the class; includes a meditation (dhyana) practice	20 min	
Departure	Time for the instructor to help participants transition out of the class safely and successfully, including answering participant questions	5 min	
Social time (optional)	A carefully and creatively facilitated conversation with participants intended to promote reflection and connection; the instructor disengages from conversation after initiating the discussion	5–10 min	
Min minutes

The instructor guidebook (version 1) is 36 pages, with 6 main content areas: (1) understanding gynecologic cancer and its impact on QoL, (2) thriving and program delivery, (3) supporting accessibility and inclusivity, (4) program and class description (i.e., program structure, class structure, program features, class breakdown), (5) base session, and (6) appendices (i.e., compendium of asanas, breath practices, and meditation practices, additional resources).

Program and instructor guidebook assessment

Participants’ (i.e., women diagnosed with gynecologic cancer, yoga instructors) evaluation of the proposed program and instructor guidebook are organized into 6 areas: (1) will the program meet the needs and wants of the target population, (2) will the target population be able to do what is asked of them in the program, (3) will the target population be able to engage with and use the program as intended, (4) will the target population be at risk for mental or physical adverse events, (5) will the target population value their experiences in the program, and (6) will the instructor guidebook offer adequate guidance for the delivery of the program as intended. Anonymized quotations are presented in Table 7. In addition, the ORCF Vice President of Programs and Stakeholder Development (NP) reviewed the guidebook and provided feedback. Table 7 Quotes from focus group participants evaluating the program proposed and instructor guidebook

Will the program meet the needs and wants of the target population	
Approval	
“The 12 weeks that was very good. I think it’s long enough to encourage you to keep coming, I think that is the perfect length for getting back into things.”

“If I’m going to leave my house to get somewhere I also kind of want to maximize the time, but it’s nice like the hour I think is also a little bit more reasonable to for people to fit in to their day if they’re doing it virtually.”

“I know a lot of my students who come for those twice a week classes, they get quite a lot more benefit out of it. […] So twice a week, especially if they give like 2–3 days in between, it kind of motivates people to keep thinking about what they’re doing.”

	
Suggestions	
“I think 60 min can be great, but it can be too long in some situations. But it’s hard of course to have a one-size-fits-all perfect length. So I guess then it comes with the instructor, maybe to say if it’s too long, ‘just rest or take it easy there’.”	
Will the target population be able to do what is asked of them in the program	
Approval	
“Yeah, I’m a huge fan of those ones [short duration pre-recorded videos]. I think that’s so helpful. I just think of my schedule during the week, I kind of run around like a crazy person. So even just like 20 min like that just makes a world of difference.”

“I really, really like the idea of journaling. I think that it’s a way to really connect with yourself, your thoughts, and how you’re feeling. […] The option is really nice that it’s there and giving people the space to do this process at the end of the day.”

“If you’re new to yoga or relatively new to yoga and you’re after surgery, you’re trying to get back into things, you’re trying to get your body accustomed to getting back into these poses. You need to have that repetitive instruction. That it will allow your body time to become accustomed to doing these poses again.”

	
Suggestions	
“The one that popped out to me was the cobra, that right after surgery, when you have an incision, all along the belly, then it’s not, I think a thing to do.”	
Will the target population be able to engage with and use the program as intended	
Approval	
“I love the hybrid format that you’re proposing. I think it meets people where they are.”

“I think the combination of classes offered in-person and online is perfect, because if you’re at a stage where you may need to take breaks or something, then you can take the class from at-home and take the breaks wherever needed.”

	
Will the target population be at risk for adverse events related to the program	
Approval	
“There’s the opportunity to do some training there, to go through those base shapes and say these are all the modifications, so that when people are at-home, they’ve already had that in-person experience or exposure putting themselves into poses with instruction specific for their body.”

“The opportunity to have some one-to-one with the teacher so as they’re doing the class, they’ve got a really great understanding.”

“If you’re new to yoga and you’re after surgery, you’re trying to get back into things, you’re trying to get your body accustomed to getting back into these poses. You need to have that repetitive instruction. That it will allow your body time to become accustomed to doing these poses again.”

	
Suggestions	
“People don’t want to turn on their cameras and maybe they’re getting into a pose that you would think might be not the right place for them to go at the time. It’s really hard for you to kind of navigate that virtually.”	
Will the target population value their experience in the program	
Approval	
“It’s [cancer and treatment] freaking lonely and it’s isolating. […] It’s nice if hopefully after the 12 weeks people have found some of those relationships that stick.”

“I really love the opportunity being presented and knowing that it’s an optional thing, so no one feels like they have to something if they don’t want to.”

“During the classes, having not only the new people that were going or starting treatment but that there could be a couple of other people that have progressed to a different point, to show the newcomers that life does go on after having gynecological cancer, that there is a life after gynecological cancer, that it is not the end.”

	
Suggestions	
“That’s [group discussions] got to be very skillfully done, so that you don’t have a great big downward spiral. Somebody says, ‘I found that really hard today’ and someone else says, ‘yeah, me too,’ ‘Me too,’ ‘Me too.’ And then people leave feeling defeated.”	
Will the instructor guidebook offer adequate guidance for the delivery of the program	
Approval	
“I enjoyed a lot the way it was put together graphically. It helped to make sense of complex information in a very small format. When I first read 36 pages, I’m like ‘ohh no, I got to read 36 pages.’ But as I was going through it's like, ‘ohh well, this is going quite well. I’m easily going through this.’”

“It was very user-friendly.”

“I think you’ve done a wonderful job of synthesizing a lot of information from a lot of people in a very full day. And think it’s very nicely organized. And will be a wonderful tool for instructors.”

	
Suggestions	
“A little bit more detail around surgery, I’m thinking about a hysterectomy versus a hysterectomy and a debulking surgery, can be a lot more expansive.”

“I would be very interested in hearing more direct things from patients or people who have undergone any of these procedures. I want to hear about their experiences.”

“Some ongoing supervision and mentorship to make sure that it’s coming alive in the right way.”

“It’s not always very affordable and a lot of yoga teachers are maybe teaching one or two classes a week and the income they get from that is not going to afford them. The opportunity to travel to get a training so you know that online stuff, it would be helpful with that.”

	
Min minutes

Will the program meet the needs and wants of the target population?

The structure of the program (i.e., program length, class length, and dosage) was deemed reflective of the discussions and appropriate for the intended purpose of the program. Instructors felt comfortable leading 60-min classes, and women diagnosed with gynecologic cancer considered it “worthwhile” to travel for this amount of time to attend class in person. Women diagnosed with gynecologic cancer also believed that 12 weeks would be sufficient to build a habit, “ebb and flow with treatment,” and create connections with others. Participants shared that attending class twice a week was a reasonable time commitment that promoted consistency. With regards to the supplemental program features, women diagnosed with gynecologic cancer considered 15 min a reasonable expectation and “doable” for pre-recorded videos to support an at-home practice. Similarly, capping the group discussions at the end of class at 10 min was considered favorable to a longer duration as it was a minimal commitment that could lead to more socialization after class, if participants were interested. However, women diagnosed with gynecologic cancer did underscore that two 60-min classes for 12 weeks might be too much for some participants, especially those on treatment.

Will the target population be able to do what is asked of them in the program?

Participants were in favor of using a “base session” to structure the class content; they felt that the repetition would allow for bodies to gradually adapt and improve, thus promoting feelings of mastery. Participants underscored that some asanas in the “base session” might be difficult for certain individuals, including those on-treatment or who have recently had surgery. Although some women diagnosed with gynecologic cancer noted that not all participants would engage with supplemental features (i.e., pre-recorded videos, journal, social time) because of personal interest or desire, participants felt that the short 15-min pre-recorded videos would make it more feasible to fit yoga into a busy day or do when lacking motivation to practice. Women diagnosed with gynecologic cancer thought the optional journaling as a supplemental feature was doable and would help them work on connecting with themselves and tracking their progress within the program.

Will the target population be able to engage with and use the program as intended?

To best integrate the target population’s needs and wants, the proposed program is a flexible bi-modal format, wherein classes could be attended in person or synchronously online (after the first 4 classes). Participants favored giving choices (i.e., letting people choose if/when they want to attend classes in person or online) as this would promote a sense of personal autonomy and hopefully capitalize on the advantages of both modes of delivery. Specifically, participants believed that in-person classes would provide face-to-face tailored feedback opportunities. Instructors conveyed that face-to-face classes would provide future instructors the ability to directly observe and provide tailored modifications (as people do not often turn their cameras on at home making tailored modifications unlikely). Also, while women diagnosed with gynecologic cancer saw in-person classes as a strategy for developing a sense of group support, they shared that online classes could enable higher participation because online delivery helps address emerging challenges associated with in-person classes when people have physical limitations, concerns about infection, treatment-related side-effects, and geographical/environmental barriers.

Will the target population be at risk for mental or physical adverse events?

One important consideration when developing this program was safety. Instructors felt that making the first 2 weeks (or 4 classes) in person only could help decrease the likelihood of participants experiencing adverse events because future instructors would be able to more fully assess participants’ current capabilities and, in turn, offer modifications and tailoring that would promote safety, competency, and mastery. Similarly, participants acknowledged the intake form and meeting as features that could reassure the target population and facilitate conversations about safety topics that they might not want to bring up on their own. In addition, the “base session” was deemed appropriate and safe by participants. Nevertheless, instructors did acknowledge that it is difficult to instruct online because it is not always possible to see participants to ensure they are moving in a safe manner. That said, participants highlighted that it will be important for the program instructor to have experience delivering bi-modal classes to ensure they are comfortable and competent in this mode of delivery. In addition, participants noted a benefit to having an additional person to monitor people online to support the instructor (participants did not indicate specific qualifications for this person). Finally, participants raised concerns that the instructor might try to “counsel” people during the group discussions, and as such, the instructor should receive guidance on how to facilitate conversation but not offer advice or counseling.

Will the target population value their experience in the program?

Participants identified several features of the program that will likely promote value. First, women diagnosed with gynecologic cancer thought having the online classes delivered synchronously instead of asynchronously was valuable because it could help to promote engagement and enjoyment by fostering interactions with the instructor and other participants. Second, women diagnosed with gynecologic cancer highlighted the value of formally including group discussion in the design of the program because having the opportunity to connect with others during a (potentially) lonely time could be beneficial for the target population. Third, women diagnosed with gynecologic cancer felt the provision of optional features was valuable because it could promote a sense of autonomy and comfort that would contribute to a pleasant experience in the program. Fourth, women diagnosed with gynecologic cancer thought offering the program to mixed staging and mixed points along the continuum was valuable because it could provide an opportunity to learn from different experiences. However, participants noted two elements of the program that could detract from the value of the program. First, adults diagnosed with cancer acknowledged it could be difficult for individuals to connect online with the other participants; thus, detracting from the potential value of the group-based and synchronous elements of the program. Second, participants were concerned that group discussions could become negative if participants experienced physical or emotional hurdles during the practice.

Will the instructor guidebook offer adequate guidance for the delivery of the program?

The guidebook was considered a valuable asset for supporting future yoga instructors’ delivery of the yoga program as intended. Participants valued the section dedicated to accessible and inclusive language practices (e.g., being inviting, accepting, and welcoming, offering choices, meeting the body where it is) to ensure that future yoga instructors are able to engage with participants in a supportive manner. Yoga instructors appreciated the balance between visual and textual elements in the guidebook; they had initially been concerned about the length of the document (i.e., 36 pages) but they found the document easy to read, promoting the likelihood that future yoga instructors would read and use the manual to support delivery. That said, women diagnosed with gynecologic cancer suggested providing more information pertaining to the timing of treatments, diversity of treatments, and examples of patients’ experiences practicing yoga to better prepare instructors on the needs and potential limitations of the target population. In addition, yoga instructors noted that specific training around (1) delivering a bi-modal program, (2) psychosocial outcomes and yoga, (3) trauma-sensitive approaches, and (4) cancer and treatment side-effects would be beneficial to feel more comfortable delivering the program. Since there is the convenience of attending training online, they suggested training on specific topics could be delivered online using modules.

Partner organization assessment

Health equity is a strategic goal and focus of the ORCF. Financial costs and limited language and cultural adaptation of programs and resources are key barriers to accessing supportive cancer care in the Ottawa (Ontario, Canada) region, especially for historically marginalized and under-resourced groups. Thus, partnerships, like the one described herein, are paramount for identifying and co-creating solutions to provide more inclusive and accessible community-based supportive cancer care programs and resources, for all people, families, and caregivers in the Ottawa region facing a cancer diagnosis.

As such, the co-created program and guidebook align well with the ORCF’s mission and will be an excellent addition to the suite of programs already offered at the ORCF. A key consideration with supportive cancer care is that social support is a key contributor to reducing psychological distress and improving QoL [46, 47]. Building social opportunity into ORCF activities and programs provides a co-benefit to programs, increasing the overall supportive value of the program beyond the primary goal of the program. The ORCF is a unique space where people with cancer, families, and caregivers can receive peer support in an informal and unstructured way should they choose, which is encouraged with environmental elements (e.g., a tea station, welcoming sitting spaces) and should be reflected in programs offered. Therefore, the social and therapeutic nature of the final part of the classes (i.e., the built-in group discussions) is in alignment with the needs of the ORCF and its clients. In addition, the ORCF intentionally offers programming that provides participants with the opportunity for free expression to help them explore and process their emotions, as such, the journaling and self-directed nature of the yoga is likely to support individual effectiveness within a context like the ORCF.

In addition, the section in the guidebook dedicated to accessibility and inclusivity was very helpful and thoughtfully written, especially the approach to modifying the poses for individual comfort and capacity. The ORCF is centering health equity as a strategic goal and reaching hard-to-reach populations in the Champlain region (and beyond) is a key focus in program delivery. Therefore, working towards adapting the program and guidebook both culturally and for languages of choice to reach more diverse and often marginalized populations to further expand the accessibility and inclusivity of the program is a key next step. This could be reflected in prioritizing diverse representation in instructors and language offerings once the pilot implementation of the program shows support for the feasibility, acceptability, and benefit of the program to participants.

Discussion

As previous research has demonstrated, it is not uncommon for current yoga programs to not fully address the needs and wants of participants [20]. The purpose of the present collaborative project was for academics to partner with a non-for-profit community organization (i.e., ORCF) to collaborate with adults diagnosed with gynecologic cancer and yoga instructors to co-create a yoga program and inform the development of a feasibility trial to assess the feasibility, acceptability, and benefits of the program. Through a 3-phase approach, participants shared their opinions on data collection (both for the current study and the feasibility trial), the structure of the program (e.g., program length, class duration, class dose), preferred mode of delivery (i.e., bi-modal), and optional supplementary features (i.e., group discussions, journalling, database of pre-recorded short duration classes). Participants also shared their opinions on the potential of the program to address the target population’s wants and needs, as well as the usability, risk, and value of the program and its features.

The co-created program shares several similarities with previously tested programs, including the structure of the program (i.e., length of program, duration and frequency of classes, type of yoga delivered, group-based; [48–50]) and provision of materials to support at-home practice [49, 51–53]. However, to the authors’ knowledge, no programs have been delivered using a flexible bi-modal format, marrying the strengths of both in-person and synchronous online delivery. Several decisions made during the co-creation process to elevate participants’ experiences also have support from the literature. Specifically, the importance of tailoring the program to individual needs [54, 55], offering the program across the cancer continuum [51, 54–57], and incorporating opportunities for socialization among participants [51] have been highlighted as wanted and/or valuable in previous yoga programs for women diagnosed with cancer. In addition, cautions raised during the co-creation process about online delivery, including technical difficulties and engaging participants online, have been noted as challenges in previous studies [48, 50, 51]. A unique concern raised was ensuring instructors remain within the scope of their practice and do not counsel participants during the social time at the end of classes, raising a valid concern about the training of yoga instructors for program delivery in clinical populations.

The training of yoga instructors or the training instructors receive to deliver programs to cancer survivors has received limited attention in the literature [19]. This is a concern because instructors can deeply impact participants’ experiences in a yoga class. For instance, middle-aged women have reported that yoga instructors in the community domain (i.e., not a part of studies) can evoke feelings of frustration, anger, disappointment, and shame through instructional practices and behaviors that praise body types that fit the thin-youth ideal, are not warm and welcoming, and do not prioritize accessibility [58]. However, instructors who prioritize weight-inclusivity in their classroom spaces have demonstrated that there are behaviors that instructors can actively engage in to promote a sense of belonging, acceptance, and agency among participants, such as celebrating body diversity, using language that disrupts the hierarchy of bodies, and offering choices without assumption of abilities [21]. The variation in participants’ experiences indicates that, like most person-facing professions, there are differences in instructing style and instructors’ behaviors that cannot be taken for granted within a research context. Thus, as indicated by participants’ responses, the guidebook is an important component of ensuring positive experiences in the program but should be supplemented with training. Train-the-trainer models are an educational model where an organizing institution that houses content-area expertise identifies potential trainers with ties to the community targeted for training [59]. These trainers are provided with education, instructional tools, and programmatic guidelines that enable them to, in turn, provide specific training to target audiences; still, it will be necessary to continue to refine the training process through post-training monitoring to ensure it meets the needs of instructors and women diagnosed with gynecologic cancer and results in quality implementation of the program.

The major strengths of the yoga program, as identified by participants, include a dose that balances the potential for competency building and the target population’s schedules, convenient and flexible delivery that considers safety, and opportunities to build social connections. However, the most notable strength of the program seems to be the opportunity for choice. Participants, particularly women diagnosed with gynecologic cancer, identified the intrinsic value of providing prospective program participants with choice, whether that be in how they attend the program (i.e., in-person or via teleconference technology), if and to what extent they use the supplemental program features, and the manner in which the yoga is instructed (inclusive and non-prescriptive language). By seeking to provide the target population with choice, participants highlighted that the program has the potential to promote autonomy and empowerment. Promoting autonomy within a physical activity program, such as yoga, is valuable because more autonomously motivated behavior (i.e., behavior that is self-endorsed, volitional, and done willingly) is more likely to be considered valued, meaningful, consciously assimilated into the self, and brought into alignment with other values and goals [60]. Promoting empowerment may stem from the participatory relationships, person-centredness, support, trust, and respect that choice offers within the program [61]. As a result, facilitating empowerment in the program has the potential to enable conscious self-understanding, mastery, trustful relationships, and quality of life [61]. Indeed, Flanagan and colleagues [62] used the Power as Knowing Participation in Change theory in their yoga intervention for women diagnosed with breast cancer because, similarly, they acknowledged that promoting freedom and choice was paramount to participants’ engagement in the intervention. Accordingly, by prioritizing choice within the current program, it could not only lead to higher participation by increasing accessibility but could also increase motivation and perceptions of empowerment. Moreover, this approach aligns with the person-centered mission and value of the ORCF, which emphasizes a holistic view of wellbeing that is defined by the individual.

Limitations of study

The limitations of this study should be kept in mind when interpreting the results. First, while the study incorporated a formal evaluation of the co-created program, there was no formal evaluation of the intended program user experience in the co-creation process (i.e., co-creators’ perceived engagement and enjoyment of the process). As a result, there may have been missed opportunities to improve the partnership or collaboration process. Moreover, an evaluation of the program’s feasibility and benefits was not conducted (but is underway). Second, as indicated by NP’s feedback, there are still opportunities to increase the inclusivity of the program—active steps will be taken to improve this as the program is refined. Third, the study relied on 2 types of participatory research methods (i.e., consensus panel meeting, qualitative focus groups) for the creation of the program; several other participatory research methods (e.g., arts-based methods, citizen science, social audits, digital storytelling, photovoice, community mapping, walkabouts) are available and may have promoted more engagement and accessibility from a more diverse sample. Fourth, a convenience sample of women diagnosed with gynecologic cancer and women yoga instructors took part in this project. The extent to which this sampling approach may have affected the co-created yoga program and instructor guidebook is unknown. Additional facilitators and barriers to participation and engagement may exist that were not identified in this study. Ongoing research will need to incorporate insight and feedback from a more diverse range of adults to determine the program’s broader applicability and effectiveness.

Implications

Though further investigative efforts are required to test the acceptability, feasibility, and benefits of the co-created yoga program, the findings from this study and the partnership have implications in the broader literature. For instance, several of the valuable features identified in this program (e.g., bi-modal delivery, inclusion of social interaction) are not unique to a yoga program. Thus, it is possible that other lifestyle interventions (e.g., physical activity and/or nutrition counseling) may benefit from the integration of these features into their program design. In addition, this study provides a roadmap for a successful partnership with a variety of non-academic partners. Indeed, the transferability of this methodology as a model to co-design other programs aligns well with the ORCF’s investment in collective community wisdom and strengths and the importance of lived experience as a key input that integrates context and content experts in program and resource development.

Conclusions

The objective of this study was to partner with a community organization that offers supportive care services to cancer patients and survivors to co-create a yoga program for adults diagnosed with gynecologic cancer with an accompanying instructor guidebook through collaboration with adults diagnosed with gynecologic cancer and yoga instructors. Using a 3-phase collaborative process guided by the KTA framework, a 12-week program that offers two 60-min group-based Hatha yoga classes/week to five to seven participants/class, online or in-person, with optional supplemental features was co-created. Overall, participants deemed the co-created program and instructor guidebook to be reflective of their needs and preferences, though they did provide feedback to refine the compatibility (i.e., alignment with existing practices, values, and expectations), performability (i.e., ease of implementation), accessibility (i.e., ease of access and engagement), risk precautions (i.e., measures taken to mitigate potential risks or harms), and value (i.e., overall benefits, worth, and relevance) of the program as well as the instructor guidebook. The feasibility, acceptability, and potential benefits of the program are being assessed in an ongoing feasibility trial. If deemed feasible and acceptable, and the potential for enhancing patient-reported outcomes is observed, further investigation will focus on larger-scale trials to determine its value for broader implementation.

Supplementary Information

Below is the link to the electronic supplementary material.Supplementary file1 (DOCX 26 KB)

Acknowledgements

We would like to thank all participants for sharing their knowledge and experience. We would like to thank Alice Tate (AT) for her dedication as a research assistant. We would also like to thank Stephanie Woodward and Patricia Barrett-Robillard for their dedication to the project during their tenure at the Ottawa Regional Cancer Foundation.

Author contributions

Conceptualization, J.P. and J.B.; Methodology, J.P; Analysis, J.P.; Investigation, J.P. and J.B.; Resources, C.H. and N.P.; Data Curation, J.P.; Writing – Original Draft Preparation, J.P.; Writing – Review & Editing, J.B., C.H., and N.P.; Visualization, J.P.; Supervision, J.B.; Project Administration, J.P.; Funding Acquisition, J.B., with collaboration from C.H., and N.P.

Funding

This research and the article processing charge were funded by the Social Sciences and Humanities Research Council of Canada, grant number 892–2021-1002.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

The study was conducted according to the guidelines of the Declaration of Helsinki and approved by the Ottawa Health Science Network Research Ethics Board (protocol code 20210474-01H, July 27, 2021) and by the University of Ottawa Research Ethics Board (protocol number H-08–21-7280—OTH-7280, August 4, 2021). Informed consent was obtained from all participants involved in the study.

Consent for publication

Informed consent has been obtained from all participants to publish this paper.

Competing interests

The authors declare no competing interests.

Abbreviations

QoL Quality of life

KTA Knowledge-to-Action (framework)

ORCF Ottawa Regional Cancer Foundation

1 For brevity, programs refer to community-based programs, researcher delivered interventions, and services intended to have participants practice yoga.

2 Of note, 1 researcher left the meeting after Sect. 2 due to a scheduling conflict. Therefore, 1 group did not have a researcher for most of the day.

3 For access to the most up-to-date version of the program and instructor guidebook, please contact the corresponding author.

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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