EXCEL-Punjabi: the process of using a community based participatory research approach for a culturally-tailored exercise oncology intervention

Abstract

Background

Physical activity is an effective evidence-based intervention with extensive physical and psychosocial benefits for individuals living with and beyond cancer. Despite being the largest visible minority group in Canada, uptake of currently available exercise interventions, such as the Canada-wide Exercise for Cancer to Enhance Living Well (EXCEL) study, is low among individuals of South Asian heritage living with and beyond cancer. Culturally tailored programming may help to address barriers to participation.

Methods

Using a community-based participatory research (CBPR) approach, we worked with a Punjabi Advisory Board to identify culturally specific gaps and adaptation needs for the EXCEL intervention. CBPR activities included: capacity bridging, identifying community needs and priorities, co-designing and tailoring the intervention, ethics submission, and collaboration on research outputs.

Results

These collaborative efforts resulted in the development of the EXCEL-Punjabi, a culturally tailored exercise oncology intervention. Specific changes made to the EXCEL study included language of delivery, family involvement, educational handouts rather than webinars, culturally specific recruitment strategies, and one-on-one support for completing questionnaires.

Conclusion

Ongoing collaboration with the Punjabi Advisory Board will allow for quality improvement of the intervention. The work outlined herein provides transparency of the CBPR process followed for the cultural tailoring of pre-existing exercise oncology programming. Future work will evaluate the feasibility and effectiveness of the EXCEL-Punjabi intervention. Overall, building a culturally tailored intervention with community input allows for more underserved individuals to experience the physical and psychosocial benefits of exercise oncology programming. This work represents a step towards more equitable supportive cancer care.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s40900-026-00976-4.

Plain language summary

Exercise is an effective evidence-based intervention that improves wellbeing at all stages of the cancer journey. Despite existing interventions, not everyone has equal access to these programs. Specifically, the South Asian population is underrepresented in programs. We worked with community members as equal partners to culturally adapt an existing exercise oncology intervention (EXCEL) for the Punjabi South Asian population. This paper outlines the process of meetings, discussions, and co-designing the EXCEL-Punjabi intervention with the community-partners.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s40900-026-00976-4.

Background

Cancer and its treatments are associated with a wide array of negative physical and psychosocial health outcomes [1–3]. Individuals of South Asian heritage represent the largest visible minority group in Canada [4]. This population is also disproportionately impacted by certain cancers [5]. For example, one study reported a two times increased risk of recurrence and a significantly worse disease-specific survival for oral cavity squamous cell carcinomas [6]. Other studies have also found that South Asian women were more likely to be diagnosed with later stage cancers [7].

Given the evidence of the physical and psychosocial burdens associated with cancer treatment, it is important to have evidence-based supportive cancer care strategies that are accessible to all. Exercise is one such evidence-based strategy that results in both physical and psychosocial improvements in those living with and beyond cancer [8]. Both epidemiological studies [9, 10] and a recent randomized controlled trial [11] have shown that exercise is linked to increased survival in those with a previous cancer diagnosis. Despite these benefits, moving the exercise evidence to practice is limited and gaps in access remain for many populations [12]. To address these gaps, the Canada-wide exercise oncology study, Exercise for Cancer to Enhance Living Well (EXCEL), was designed to reach rural, remote, and underserved individuals living with and beyond cancer [13]. This study builds on the success of previous exercise oncology initiatives in Alberta [14–16].

EXCEL has recruited 1,495 participants across Canada [17]. However, there continues to be a lack of engagement of visible minority populations across much of the exercise oncology research [15, 17]. For example, less than 5% of participants identified as being of Asian heritage [15]. Previous work with individuals of South Asian heritage living with and beyond cancer has found that this population faces many unique barriers to exercise oncology resources including a need for cultural considerations related to cancer and health, informational needs related to the importance of exercise, and the need for culturally tailored exercise oncology interventions [18]. Importantly, there is a significant need for translation of exercise oncology resources into South Asian languages (e.g. to Punjabi – the most commonly spoken South Asian language in Canada; [18, 19]. Overall, there is a need for culturally-tailored approaches to support stronger engagement with the South Asian population in exercise oncology interventions. However, not all South Asian populations are culturally homogenous – with over 4,500 distinct groups and hundreds of unique languages, it is important to not paint all South Asian populations with the same brush [20, 21].

Participatory research approaches provide a framework for co-developing interventions that are driven by community needs and involve research users and community partners at all stages of the process [22]. Community Based Participatory Research (CBPR), in particular, supports knowledge to action while addressing health disparities [23] and places a focus on interventions that are geared towards health equity for underserved populations [24, 25]. Previous work has highlighted the value of taking a CBPR approach when engaging individuals of South Asian heritage in research [26, 27]. CBPR is valuable for exercise oncology research with visible minority populations because it can lead to interventions that are culturally tailored and relevant. South Asian individuals living with and beyond cancer may face unique cultural, linguistic, and socioeconomic barriers to engaging in exercise. CBPR provides a tool for co-creating exercise interventions that account for these factors and improves the likelihood of successful engagement and outcomes [25]. Thus, to improve the reach, engagement, and value of exercise oncology interventions for Punjabi individuals of South Asian heritage living with and beyond cancer, this article details the CBPR approach we used to build EXCEL-Punjabi, a culturally tailored version of the current EXCEL intervention [13]. Where applicable, we are using the Guidance for Reporting Involvement of Patients and the Public 2 short form (GRIPP2-SF) reporting checklist (Additional File 1; [28]).

CBPR: tailoring for individuals of Punjabi heritage individuals living with and beyond cancer

One major issue with partnered research approaches is the danger and prevalence of tokenistic partnership. Tokenistic partnership describes superficial involvement where research partners are asked to endorse an intervention with minimal to no influence over decision-making [29]. In order to ensure intentional partnership, the CBPR approach to tailor the EXCEL study followed criteria outlined by Ward and colleagues. Table 1 provides a summary of the Ward et al. (2018) CBPR framework and the corresponding steps for EXCEL-Punjabi [30]. Guided by this framework, we developed EXCEL-Punjabi following the series of steps outlined below to ensure that the intervention was both culturally relevant and community-driven. A specific timeline of key CBPR activities can be found in Table 2.

Table 1.

Key elements of the Ward et al. 2018 framework for community-based participatory research

Ward et al. 2018 framework domain	Key elements	Actions taken for EXCEL-Punjabi
Environmental Characteristics	Previous collaborations	Based on previous work done in Alberta Cancer Exercise Intervention/EXCEL
	Community response to problem	Response to lack of engagement from South Asian populations
	Geographic/cultural diversity	Narrowed to the most commonly spoken language among South Asian populations in Canada
	Socioeconomic Determinants of Health	Discussed in initial meeting and addressed through additional Punjabi Advisory Board meetings
	Challenges/barriers
Structural Characteristics	Membership	Patient partners, qualified exercise professionals, healthcare providers, and researchers
	Complexity
	Formalization	Formalized through a mutually agreed upon terms of reference
Group Dynamics Characteristics of Effective & Equitable Partnerships	Shared leadership, including task and maintenance leadership behaviors	• Shared decision-making • Equitable authorship and credit shared • Iterative feedback on all materials • Majority votes determine decisions
	Multi-directional, open communication	Bilingual Punjabi Advisory Board meetings (English and Punjabi)
	Cooperative development of goals and shared vision	Key needs and intentions identified in first meeting
	Recognition of conflicts and constructive conflict resolution	Agreed upon processes in the terms of reference e.g. majority votes determine decisions
	Participatory decision-making processes that are flexible and use consensus for important decisions
	Agreed-upon problem-solving processes
	Shared power, influence, and resources	• Shared decision making • Shared responsibility of intervention materials • Shared responsibility of outreach
	Development of mutual trust	• Initial meeting with neutral facilitator to eliminate researcher and partner hierarchy
	Collaborative evaluation of both task/goal and process objectives	Planned for the end of the pilot intervention
	Well-organized meetings with collaboratively developed agendas and facilitation consistent with these characteristics (management)	Agendas were sent in advance with the opportunity for all members to add/edit
Intermediate Measures of Partnership Effectiveness and Equity	Effectiveness of the group in achieving its goals	Adapted a culturally and linguistically tailored exercise oncology intervention
	Personal, organizational, and community benefits of participation	Build research capacity and opportunities for involvement for partners as well as potential health benefits for individuals living with and beyond cancer
	Focus on equity within partnership processes	Shared approval of all decisions and materials
	Focus on addressing health equity	Shared focus on adapting EXCEL into a culturally and linguistically tailored exercise oncology intervention
	Capacity and ability of communities facing health inequities to engage in future partnerships and decision-making	• Opportunities for Punjabi-speaking qualified exercise professionals to get the appropriate training to lead the intervention in the future • Iterative feedback on all materials • Multiple meetings • Shared responsibility of outreach efforts amongst academic, professional, and personal networks • Power to take initiative leading outreach efforts • Shared responsibility of decision making and review and approval of materials
	Extent of member involvement
	Joint dissemination of findings and recommendations to community and academic audiences
	Shared ownership and cohesiveness/commitment to collaborative efforts
	Shift in power benefiting communities facing inequities
	Bridging social ties	New connections between researchers, healthcare providers, qualified exercise professionals, and patient partners working towards the same goal
	Synergy	• Leveraged complimentary expertise of all those involved • The efforts of all those involved led to the final EXCEL-Punjabi intervention

Table 2.

Timeline of community-based participatory research activities done for EXCEL-Punjabi

Forming the Punjabi Advisory Board

To establish the larger EXCEL study, partnerships were developed with healthcare providers, patient partners, and community partners to receive feedback and input on the development, design, and implementation [13]. To facilitate the work outlined herein, we established the Punjabi Advisory Board, ensuring we gathered input from numerous perspectives for delivery of a culturally tailored intervention that supports recruitment, adherence, and maintaining long-term exercise behaviour change. Numerous avenues were used to recruit individuals for the Punjabi Advisory Board. The final Punjabi Advisory Board consisted of four individuals in addition to the initial research team (initials used to identify members; Table 3). The patient partner (n = 1) and healthcare provider partners (n = 2) were recruited through direct outreach via email. SJ, the patient partner, had participated in previous exercise oncology programming and expressed interest in involvement for the Punjabi tailoring. Notably, SJ also holds a doctorate in Punjabi linguistics. JK, one of the healthcare provider partners, is a nurse practitioner and is a nursing doctoral candidate researching the cancer experiences of Punjabi Sikh populations. JK had come across previously published work and expressed interest in being involved in future work. The other healthcare provider partner, GB, is a family medicine doctor pursuing a fellowship in geriatrics who was active on social media. Finally, to gain the perspectives of a Punjabi qualified exercise professional, a social media post was created and posted on the Health and Wellness Lab Instagram (@wellnesslabuofc). Anyone who reached out to the lab email in response to the social media post was contacted and interviewed virtually on Zoom to better understand their background and goals for wanting to engage with the Punjabi Advisory Board. CS was invited to join for her background of working as a kinesiologist with predominately Punjabi persons as well as her proficiency in reading/writing in Punjabi. Overall, each member of the Punjabi Advisory Board provided representation of both lived and professional experiences, was interested in the project, and could commit to engagement to help to build EXCEL-Punjabi.

Table 3.

Roles and initials of each Punjabi Advisory Board member

Role	Initial
Patient Partner	SJ
Healthcare Providers Partner 1	JK
Healthcare Provider Partner 2	GB
Qualified Exercise Professional Partner	CS

After establishing the Punjabi Advisory Board, the terms of reference were developed. The original EXCEL Advisory Board Terms of Reference adapted for EXCEL-Punjabi was sent to each Punjabi Advisory Board member via email for input and consensus-building. The Terms of Reference outlined the purpose of the Punjabi Advisory Board, the mandate, the role and responsibilities, membership (members, vacancy management, remuneration), meetings (minutes, quorum, support to the board), reporting, and approval. All members except one had no edits or feedback and were happy with the Terms of Reference. One member requested an addition indicating authorship requirements for publications. The final Terms of Reference can be seen in Additional File 2.

Preliminary work: capacity bridging and relationship development

A key component of CBPR is capacity building – ensuring that all members of the research team understand research processes and methodologies [31]. This can then allow all members of the research team to contribute effectively and equitably to the research process. Equipping community partners with the research tools needed to effectively engage in all stages of the research process supports empowerment and equitable contribution. This capacity building is particularly beneficial with visible minority populations where there may be a sense of distrust toward researchers [26]. While the foundational principles of capacity building are important, we focused on capacity bridging. Capacity bridging acknowledges that all partners are bringing their own knowledge and expertise to each other. These capabilities are being bridged together in a new context. Thus, capacity bridging is the term being used herein. Moreover, capacity bridging and relationship development help in building trust, ensuring that partners feel that their perspectives are valued, and giving partners an active role in the research. As a first step, members of the Punjabi Advisory Board were sent relevant exercise oncology papers [13, 18] to build a foundational understanding of exercise oncology as well as the work to date with individuals of Punjabi heritage. These papers were sent via email ahead of our first meeting held at the University of Calgary.

First meeting: identifying community needs and priorities

The initial hybrid in-person and online meeting included members of the Punjabi Advisory Board as well as other key community members from community-based organizations (Punjabi Community Health Services and Wellspring Alberta) and external researchers in Community Health Sciences and Kinesiology. For those joining in-person, parking was paid for to reduce any financial barriers. A Meeting OWL 3© was used to support engagement with online participants. Importantly, an external neutral facilitator with significant experience in leading group discussion chaired the meeting. Consistent with the CBPR principle of establishing trust and mutual respect, this foundation created by the facilitator eliminated any hierarchy between the core team (including the Punjabi Advisory Board), community partners, and other researchers [30]. The facilitator was provided with the background reading materials via email and understood the aim of the meeting was to identify the goals and needs for building an exercise oncology program for individuals of Punjabi heritage. Beyond this, the facilitator designed the plan and activities for the first meeting.

The meeting began with all attendees being asked to: (a) introduce themselves (name, occupation/role); (b) state what brings you here today; and (c) describe what exercise look like and feel like for you. The facilitator then introduced the purpose of the meeting, what it means to collaborate with all those involved, and the value that everyone brings to the table. Clarifying the importance of everyone at the start of this meeting facilitated establishing trust and mutual respect. At this point, MB and SNCR were asked to speak about exercise oncology and the related background work to date with the Punjabi population. After this overview, the facilitator engaged everyone in a gallery walk. The gallery walk consisted of poster boards around the room with the following questions: (1) what is the need for exercise for individuals of South Asian heritage living with and beyond cancer (2)? what are the barriers/facilitators for participation (3)? what additional concerns, comments, questions do you have about this topic? Attendees silently walked around the room with a pen and Post-It notes and added their responses to each question to the poster boards (five mins). The responses were then discussed as a group (10 min). Subsequently, small group discussions took place to address the following topics: (1) how can the community find out about programming? What do you think effective ways for recruiting this population are?; (2) what are the strengths and/or weaknesses of the EXCEL exercise prescription (two days per week, 60 min classes, multimodal exercise); (3) what do you like and what do you think is missing from this list of “exercise education” webinar topics? (a) how to start moving; (b) cancer related fatigue (c) long term physical activity maintenance; (d) goal setting; and (4) what will be needed for this programming to be successful in the Punjabi community?

This group discussion was recorded and transcribed by IB and analyzed by MB using conventional content analysis grounded in a constructivist paradigm [32, 33]. An important aspect of qualitative research is positionality. Positionality involves acknowledging the researchers’ sociocultural background in order to provide transparency of the context that may influence the research process and interpretation of findings [34]. Researcher positionality focuses mainly on the first two authors most involved in conducting analysis. The first author is a 27-year-old, cisgender female MD/PhD Candidate. She is a second-generation Canadian born to Canadian immigrants of Indian origin. With multiple family members diagnosed with cancer, she experienced firsthand the challenges of navigating the Canadian cancer care system and the lack of access to supportive cancer care resources for underserved populations. In combination with her years as an exercise oncology instructor, these experiences were shaped in her commitment to making exercise oncology resources accessible to all. The second author is a 24-year-old, cisgender female Master of Public Health student. She is also a second-generation Canadian born to Canadian immigrants of Indian origin. Her experiences as an individual of South Asian heritage and as a volunteer in exercise oncology classes, ignited a drive to make exercise oncology more equitable.

Content analysis results

Two themes were identified through analysis. The first theme was “the need for education and destigmatization” and included the codes (a) is rest best? and (b) what do I do? The former was discussing the common misconception within the Punjabi population that resting is the recommended course of action when someone is sick or unwell. In addition, there was discussion around the stigma towards cancer in general – it’s thought to be a death sentence and not something that you talk about. The latter discussed questions around not knowing what type, frequency, and intensity of exercise is appropriate. The second theme was “practical and cultural accessibility” and included the codes (a) dissemination needs (i.e., needing better more culturally tailored outreach methods to spread the word), (b) gender norms (i.e., the different expectations of men and women that may act as barriers to becoming more physically active), (c) family support (i.e., the importance of encouragement and involvement from the family in exercise behaviour change), and (d) logistical barriers (i.e., language barriers, transportation barriers, technological barriers, childcare concerns, and work conflicts). This meeting ended with an established understanding that cultural considerations are needed when trying to facilitate exercise behaviour change for individuals of Punjabi heritage living with and beyond cancer.

Follow-up Punjabi Advisory Board meetings

Agendas for all follow-up Punjabi Advisory Board meetings were sent out beforehand with the opportunity for all Punjabi Advisory Board members to add to or edit as desired.

Co-designing the tailored intervention

Following the initial meeting with key community members and research members external to the core team, the Punjabi Advisory Board reconvened to discuss the logistics of a tailored intervention. The aim of this Punjabi Advisory Board meeting was to be able to address the cultural, linguistic, and social needs of Punjabi individuals living with and beyond cancer, while still maintaining the evidence-based core of the original EXCEL intervention [13]. This included discussion of language for delivery of the program and for all program materials, inclusion of support persons, role of the instructor, location for program delivery, promoting awareness, and incorporating behaviour change education.

First, the language barrier concerns where discussed to address the previously identified practical and cultural accessibility needs. We had previously decided to translate EXCEL into Punjabi because it is the most commonly spoken South Asian language in Canada. Data collected in EXCEL include fitness assessments, as well as questionnaires on quality of life, cancer symptoms, exercise barriers and facilitators, current physical activity levels, health screening, and health status. To decide what measures would be included, the measures included in the EXCEL study were presented to the Punjabi Advisory Board to decide what measures were relevant and important to keep for this Punjabi intervention. The Punjabi Advisory Board recognized that language support would be needed for these questionnaires and that we needed to provide a translated recording to play while participants completed the questionnaires. These translated recordings were filmed by MB and reviewed by SJ and CS. The Punjabi Advisory Board also noted that one-on-one help must be offered by the study team to ensure accurate completion of responses if needed. MB and IB also created translated posters and brochures to promote EXCEL-Punjabi which were sent to the Punjabi Advisory Board for approval. Finally, the topics of the educational webinars from EXCEL were translated to address the concerns around education and destigmatization, supporting continued delivery of the ‘exercise and educate’ approach [13, 35]. The education topics were translated by IB and reviewed by SJ and CS. Further, in recognition of busy schedules and competing priorities (e.g. work, childcare, and familial obligations), it was decided that participants would receive pamphlets with the education topics and discussion would be integrated throughout the classes rather than during a separate webinar. This is similar to the approach used by the Alberta Cancer Exercise intervention [35].

Second, given the importance of family support, the Punjabi Advisory Board reinforced that EXCEL-Punjabi would allow participants to bring a caregiver or family member with them to exercise classes. However, to encourage supportive involvement, the Punjabi Advisory Board suggested developing guidelines on caregiver/family member engagement as a participant and reinforcing the importance of the qualified exercise professional to safely and effectively lead the class.

Third, consistent with EXCEL, the continued delivery of online and in-person classes was supported. The Punjabi Advisory Board also highlighted that in-person classes in a convenient location for Punjabi individuals (e.g., community centres that serve areas with high populations or places of worship including Gurudwaras) would be advantageous.

Ethics and outreach: continued research capacity and shared ownership

Building research capacity is a valuable aspect of community engaged research where it is ensured that all members of the research team understand research processes [31]. Ethics documents were compiled by the first and senior author. In order to get feedback on the ethics application, it was important that members of the Punjabi Advisory Board first understood what each required section of the application was. Thus, an overview document outlining and explaining each section of an ethics application (e.g. conflict of interest, risk assessment, benefits analysis) was sent along with the full ethics application. The Punjabi Advisory Board were prompted to ask any questions they may have had on the ethics application process, and to provide feedback on the final ethics application.

Another important consideration of partnered research approaches is clearly defined roles and responsibilities [36, 37]. Shared leadership is reflected in the CBPR framework which highlights empowerment for sustainability [30]. As such, after ethics approval was received, the responsibility of recruitment and dissemination was shared amongst the whole team. To increase awareness, the Punjabi Advisory Board decided that they would engage in outreach activities to capitalize on their pre-existing networks. Posters and brochures were disseminated among their networks – including in-person delivery to community sites, sharing on their social media platforms (WhatsApp, Instagram, Facebook), and emailing to community-based contacts. In addition, the qualified exercise professional on the Punjabi Advisory Board was invited to receive the cancer-specific training offered through Thrive Health Services [38], fostering capacity to potentially lead the intervention in their community.

Outcomes of the CBPR process: EXCEL-Punjabi

The CBPR process gathered the unique perspectives of researchers, patient partners, healthcare providers, and qualified exercise professionals, and resulted in the culturally and linguistically tailored EXCEL-Punjabi study. EXCEL-Punjabi was a hybrid (online and in-person) 12-week circuit-based multimodal exercise oncology intervention hosted at the Genesis Centre, a community centre that was proximal to a large portion of Calgary’s Punjabi community. Tailoring included considerations of the unique barriers and facilitators to exercise. Specifically, key adaptations were made in the language of delivery, the outreach methods, the intervention location, and the method of delivering behaviour change education. Table 4 presents EXCEL-Punjabi’s main changes from the original EXCEL intervention based on Punjabi Advisory Board input through in-person meetings, online meetings, and email correspondence. Notably, the Punjabi Advisory Board has received and will continue to receive updates on EXCEL-Punjabi intervention. As well, those who expressed interest in helping with translation continued to be regularly consulted for any additional participant-facing materials. Moreover, both quantitative and qualitative analyses of the initial 12-week pilot intervention was done with consultation and involvement of the Punjabi Advisory Board. Finally, ongoing discussions with the Punjabi Advisory Board will allow for quality improvement of EXCEL-Punjabi moving forward.

Table 4.

Key changes made between the original EXCEL intervention and EXCEL-Punjabi based on Punjabi Advisory Board input

Category	Original EXCEL Study	EXCEL-Punjabi
Language of Delivery	English only	Punjabi only
Instructor Characteristics	Qualified exercise professional; English speaking	Qualified exercise professional; Punjabi speaking
Participant Eligibility	Over the age of 18, diagnosed with cancer at any stage of the cancer journey, English-speaking	Over the age of 18, diagnosed with cancer at any stage of the cancer journey (or a support-person), Punjabi-speaking
Session Format	Online or in-person, one-hour classes, twice weekly for 12 weeks	Online or in-person, one-hour classes, twice weekly for 12 weeks. In-person classes must be held at a location convenient for most Punjabi-speaking individuals
Program Content	Circuit-based workouts with aerobic, resistance, and flexibility exercises	Circuit-based workouts with aerobic, resistance, and flexibility exercises
Behaviour Change Support	Educational webinars covering topics of (1) how to start moving; (2) cancer related fatigue; (3) long term physical activity maintenance; (4) goal setting	Educational handouts in Punjabi covering topics of (1) principles of exercise and cancer; (2) goal setting; (3) behaviour change, relapse prevention, and motivation; (4) stress management and cancer-related fatigue; (5) social support and long-term physical activity maintenance
Recruitment Strategies	Recruitment through clinics and cancer centres	Recruitment through places of worship, Punjabi radio station, word-of-mouth, and other community sites
Community Involvement	Co-created with patient partners, healthcare providers, qualified exercise professionals, and researchers	Co-created with patient partners, healthcare providers, qualified exercise professionals, and researchers
Data Collection Instruments	Questionnaires and interviews in English	Videos provided to translate questionnaires. A Punjabi team member available to follow a standardized script to translate questionnaires one-on-one. Interviews conducted in Punjabi.
Setting	Canada-wide online and in-person.	Canada-wide online. In-person in Calgary, AB.

Discussion

This present work followed a CBPR approach to address current gaps within the Canada-wide EXCEL study in terms of participant diversity by culturally tailoring the study for an intervention for Punjabi heritage individuals living with and beyond cancer. A CBPR approach supported consideration of logistics (e.g. intervention format/location, language barriers, and behaviour change education delivery), culture (e.g. the role of the family and gender roles), gaps in knowledge (e.g., knowing what frequency, intensity, and duration of exercise is appropriate), and how to address outreach and dissemination. Integrating the perspectives of relevant partners including patients, healthcare providers, and qualified exercise professionals shaped the intervention.

While CBPR has many strengths for conducting research with equity-deserving minority groups such as Punjabi heritage individuals, there are also challenges. This includes a major time commitment from the research team as well as the partners to ensure that the partners are appropriately equipped with research capacity, continuously engaged, and committed to their agreed upon roles and responsibilities. The additional time investment needed for CBPR has been previously noted as well [23]. The clear and transparent documentation of the CBPR process outlined in this paper may help other researchers plan for the necessary time commitment to achieve success in their work. As well, the present work has revealed the importance of flexibility (e.g. in-person, online, email correspondence) with community partners – particularly those who have competing work and life commitments. Further, in the case of EXCEL-Punjabi, we learned that it was important to provide various opportunities for partners to engage (i.e., meetings to discuss intervention elements, reviewing documents, outreach in their communities). These opportunities supported Punjabi Advisory Board members to be involved in a variety of different ways based on their interest and availability. Still, evaluation of the CBPR process used herein would be highly valuable. Forthcoming work with the Punjabi Advisory Board will be looking to evaluate the extent and quality to which CBPR principles were achieved. In addition, it should be recognized that this work focused on Punjabi heritage individuals living with and beyond cancer. Further work is required to understand tailoring of exercise oncology resources for other South Asian subgroups. Still, the transparent CBPR approach outlined in this paper can help inform other cultural tailoring work.

Conclusion

Even with the success of exercise oncology implementation studies [14–16], there continues to be a lack of engagement from South Asian populations, the largest visible minority population in Canada. With a focus on Punjabi heritage individuals, our CBPR approach resulted in the EXCEL-Punjabi tailored exercise oncology intervention – the first of its kind in Canada. EXCEL-Punjabi has the potential to reduce health inequities for the Punjabi population by addressing barriers to access, rather than expecting this population to adapt to existing interventions. Future work will assess EXCEL-Punjabi to evaluate the feasibility, preliminary effectiveness, as well as implementation metrics of the intervention. As well, participant experiences with the intervention will be explored qualitatively. Building a program with the community has the potential to support ongoing delivery, meeting the needs of the underserved population of individuals of South Asian heritage living with and beyond cancer.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contributions

MB: conceptualization, data curation formal analysis, funding acquisition, investigation, methodology, validation, visualization, and writing – original draft. IB: data curation, investigation, validation, and writing – review & editing. SJ: conceptualization and writing – review & editing. CS: conceptualization and writing – review & editing. JK: conceptualization and writing – review & editing. GB: conceptualization and writing – review & editing. MHM: conceptualization, supervision, and writing – review & editing. TCT: conceptualization, supervision, and writing – review & editing. SNCR: conceptualization, methodology, funding acquisition, supervision, writing – original draft, and writing – review & editing.

Funding

Funding for the initial meeting was provided by the Canadian Cancer Society Health Equity Research Grant Letter of Intent Funding. The first author was supported by the Canadian Institutes of Health Research – Canada Graduate Scholarship.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethical approval

This manuscript describes the CBPR process used to develop the intervention and does not report identifiable participant data. As such, separate ethics approval for this component was not required.

Competing interests

SNCR is co-founder of Thrive Health Services Inc., who provide the cancer specific exercise training for the qualified exercise professionals. The remaining authors declare no conflicts of interest.