Introduction

Globally, the number of people forcibly displaced due to persecution, conflict, or generalized violence is at an unprecedented level having exceeded 100 million [1]. In Australia, approximately 800,000 refugees and asylum seekers have resettled since 1945 [2]. This population often face difficulties accessing health care and experience poor health outcomes [3]. Addressing the health needs and improving access to health care for this group is critical for protecting fundamental human rights [4].

People from refugee and asylum-seeking backgrounds have complex and intersecting risks for poor mental and physical health due to their past and current migration experiences [5, 6]. This includes high rates of pre-migratory trauma exposure and trauma experienced during the migration experience itself, such as violence, conflict, forced displacement, exploitation and in some cases lengthy periods living in detention or crowded camps [7, 8]. For some, poverty, unsanitary and crowded living conditions, inadequate nutrition and poor access to healthcare services before coming to Australia may exacerbate these risk factors [9].

Exposure to traumatic experiences and extreme stress can continue during and after migration [10]. For example, living stressors such as immigration detention, indeterminate visa status, social isolation and separation from loved ones can contribute to poor mental and physical health [9, 11]. Despite increased health needs, people from refugee and asylum seeker backgrounds often also experience challenges to accessing health services due to cultural, language and financial barriers, compounded by lack of availability, varied access entitlements and supports [12].

Subsequently, prevalence rates of posttraumatic stress disorder (PTSD) are estimated to be greater than 30% in refugee and asylum seekers, compared to a 3.8% lifetime prevalence in the general population [13]. Refugees are also more likely to experience chronic pain [14], rapid weight gain and metabolic disorders such as diabetes [15] compared to people in their host country. There is therefore a critical need to understand and support the health and well-being of refugees and asylum seekers in Australia.

Role of Physical Activity

There is extensive research showing that physical activity can improve mental and physical health outcomes in the general population [16]. Among refugees and asylum seekers, there is growing evidence to show that sport and physical activity can contribute to psychosocial support [17, 18]. There has also been research showing that leisure time physical activity can improve community cohesion, social capital and wellbeing which are important for resettlement [19]. However, evidence shows that people from refugee and asylum seeker backgrounds engage in low levels of physical activity and are often excluded from physical activity promotion interventions [20, 21]. Therefore, creating targeted health promotion interventions is important to protect the mental and physical health of people from refugee and asylum seeker backgrounds, living in Australia. While we have some understanding of the barriers to participation [22], there are a number of gaps in the literature including actionable strategies to promoting physical activity.

To increase physical activity participation, health promotion efforts need to acknowledge the marginalizing circumstances facing refugees including racism, poverty, domestic and structural violence and trauma, all of which impact physical activity participation and access to programs among refugees and asylum seekers. Co-design is a values-led process centered around five key principles: equal partnership from the beginning; openness to working together towards a shared goal; respect for different views, experiences and diversity; and working together through all stages of the project [23]. Using co-design and co-production to understand how to support people to be physically active, and ensure programs are tailored, inclusive, safe and culturally sensitive, in-depth participatory action research is needed [24]. Such strategies to promote physical activity among marginalized groups, including refugees, is increasing in popularity [25,26,27]. Therefore, using co-design methodology where lived experience and experiential knowledge of all stakeholders including service users and providers is included and valued, may help to build on the existing knowledge base and create feasible solutions to help overcome these barriers.

Using an experience-based co-design (EBCD) framework [28], this research aims to co-design a new physical activity service for people from refugee and asylum seeker backgrounds living in Sydney, Australia. The approach draws on participatory action research, user-centered design, learning theory, and narrative-based approaches to explore service user and service provider experiences with physical activity and identify priority areas for exercise promotion. This type of participatory action research is increasingly used to inform health care design, and has been shown to improve service user and staff experiences [29].

Methods

Design

This study used an Experience Based Co-Design (EBCD) framework, as detailed in Fig. 1 [28]. Primarily aligned with the Australian Healthcare and Hospitals Association (AHHA) EBCD toolkit [30] and the Point of Care Foundation toolkit [31], this study consisted of five stages undertaken over a 12-month period between January and December 2022. This paper describes the EBCD approach, processes and outcomes achieved within the project as a means of sharing and for potential replication by others. It is aligned with SQUIRE 2.0 reporting standards and recommendations for reporting on EBCD studies [32]. Ethical approval was obtained from the UNSW Human Research Ethics Committee (May 2022 / HC220155), prior to recruitment.

Fig. 1
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EBCD stages

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Setting

The project was conducted at Community Centre in Sydney, Australia. The Community Centre provides services to people experiencing social disadvantage including people from refugee and asylum seeker backgrounds, people on low income and migrant communities. Services include a food pantry, legal aid, wellbeing and welfare support.

Stage 1—Project development

Key stakeholders were engaged through the establishment of a project steering committee, who subsequently developed the project plan. This committee included research project staff, health professionals working with refugees and asylum seekers and people with lived experience of being a refugee.

Stages 2 and 3—Gathering Experiences

Participants

The experiences of both service users (people from refugee and asylum seeker backgrounds) and service providers were sought. Snowball sampling was used to recruit eligible participants through a community Centre in Sydney, Australia. Participants were informed about the study through the community Centre via email and word of mouth.

Eligibility inclusion criteria for service users included people over the age of 18 years from a refugee and asylum seeker background and living in Sydney. Eligibility for service providers included people over the age of 18 year providing a health or psychosocial service to refugees and asylum seekers e.g., legal, welfare or mental health support.

Procedure

Data were collected through interviews with service providers and service users, representing Stage 2 and 3 of the EBCD framework (Fig. 1). These interviews were conducted by authors GM and SR at a Community Centre. The interviews were semi-structured and included open ended questions about participant experience with physical activity including barriers and facilitators. Interviews were conducted one-on-one, unless a group format was preferred. The questions were modified for service providers, with a focus on their experiences working with refugees and asylum seeker groups, and the barriers and facilitators to promoting physical activity. A bi-cultural interpreter was used during three service-user interviews. Participants were reimbursed for their time with a gift voucher. All interviews were audio and video recorded and transcribed verbatim by the research team.

Data Analysis

The interviews were transcribed and uploaded to Nvivo12. Following Braun and Clarkes [33] steps of reflexive thematic analysis, firstly two researchers (GM and MS) became familiar with the interviews after multiple readings of the transcripts. This included note taking to help facilitate immersion in data. Secondly, GM and MS independently coded each interview. An inductive thematic analysis was used to identify new ‘candidate’ themes by combining similar codes to create major categories using a thematic map [33]. The themes, referred to as key ‘touchpoints’ in the EBCD framework [34] were then reviewed, checked against the data, and ‘candidate’ theme names were provided, clearly reflecting the meaning of each. Quotes were anonymised and presented to illustrate the core meaning of themes.

The video recordings were then edited to produce one composite 25-min trigger film, representing all the key touch points. The film showed the key themes generated and experience shaping moments through excerpts of the recorded interviews in a sequenced narrative. The film was created using Adobe Premiere Pro Version 12 and subtitles in English and Dari were included.

Stage 4: Understanding the Experience (Co-design)

The co-design phase involved a series of workshops representing Stage 4 of the EBCD framework (Fig. 1). Service provider and service user focus groups were held separately. Co-design workshops were 1–1.5 h in duration and conducted at the Community Centre or via Zoom depending on participant availability. A bi-cultural interpreter was present during two focus groups as needed. Each co-design session was framed by aims and objectives that were outlined at the start of each session. One researcher led the session (GM), while a second researcher observed the co-design work and took field notes (MS). Firstly, the facilitator led the introductions between participants. The trigger film was then played at the beginning of the workshop to present and clarify touchpoints with participants to ensure they solely reflect the experiences shared by the participants, rather than the authors’ perceptions. English and Dari subtitles were provided. Following the film, the facilitator enabled discussion of the film and emerging issues. Following group exercises, participants identified their shared priorities for the new service design and response actions to be implemented (Fig. 2). During co-design workshops the facilitator worked to maintain equal power relations and ensure that all perspectives were considered. In person sessions took place in a circular group format and the facilitator allocated speaking time for all individuals. Co-design workshops were recorded with consent.

Fig. 2
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Co-design workshop task where participants wrote down their priorities and ordered them as a group

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Stage 5: Review of Priorities

Service providers and service users were consulted for a final review of the priorities identified in Stage 4. This involved distribution via email of the priorities and action points, and an implementation plan for feedback.

Results

Participant Characteristics

Sixteen participants including n = 8 service users and n = 8 service providers took part in the co-design process. Most service users were female (75%), from Afghanistan (65%) or Iran (25%). The mean age of service users was 28 years (SD ± 11), ranging from 21 to 52 years. The majority (75%) had been in Australia less than one year at the time of the interview, with the range between 6 months and 10 years (Table 1).

Table 1 Service user characteristics—Stages 2 and 3
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Most service providers were female (88%) and 50% of service providers were in executive positions in a psychosocial service, as shown in Table 2.

Table 2 Service provider characteristics—Stages 2 and 3
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Stages 2 and 3

Thirteen participants took part in one-on-one interviews with the interviewer, while three participants opted for a group interview format. Four key themes/“touchpoints” and 11 subthemes were generated from service user and provider interviews. Figure 3 details a thematic map of the overlapping and intersecting themes and subthemes. The touchpoints were similar between service users and providers and have been combined with exemplar quotes in Table 3. The final video included all touchpoints identified by the service-users and providers.

Fig. 3
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Thematic map of intersecting themes and subthemes

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Table 3 Themes and exemplar quotes
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Stages 4 and 5; Agreed Priorities

Focus groups were conducted with N = 14 participants. One participant withdrew from the research and a second was overseas at the time of the co-design workshops. The key priorities identified through the EBCD process centered around creating a safe, inclusive and accessible service that acknowledges and respects people’s culture, experience and identify. Additionally, providing support to address basic needs beyond the physical activity service, improving physical activity literacy among the participants, providers and community leaders, and creating social and community connections are important components. A summary of the key priorities and response action points are shown in Table 4.

Table 4 Key priorities and action points
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Reflexivity

The interviews and focus groups for this study were conducted by GM and SR. GM is a female researcher with previous experience in qualitative research related to physical activity and mental health. GM acknowledges the potential for her own cultural and social biases to influence the research process, given her Anglo-Celtic background. GM led all the interviews with female participants. SR is a male researcher with previous experience in qualitative research focusing on physical activity, mental health and displaced communities. Strategies to address potential power imbalances included the involvement of a bicultural worker/interpreter when preferred by participants, and feedback from the broader research committee throughout, which includes individuals with diverse professional, cultural and religious backgrounds. RR, member of the research committee and co-author has lived experienced as a refugee and provided insight throughout the process. We also presented the findings back to participants mid-way through the process via a short film and again via email at the end of the analysis to ensure participants perspectives were accurately reflected.

Discussion

Using EBCD methodology, this study fills a gap in the literature by utilising the insights and lived experiences of both service users and providers to co-design a physical activity service for refugees and asylum seekers. The first stage of the EBCD process identified touchpoints that focused on enablers and barriers to physical activity participation including access (e.g., finances, transport), safety (e.g., lack of culturally safe spaces to be active) and competing stressors (e.g., employment difficulties). While these barriers were already understood [35], jointly, service users and providers identified five fundamental priorities with actionable strategies to addressing them: ensuring cultural and psychological safety, promoting accessibility, facilitating support to access basic needs, enhancing physical activity literacy and fostering social connection.

Emotional and Cultural Safety

The EBCD process identified fostering safety as the most important priority for the physical activity service. Safety involves protecting individuals from emotional, physical and psychological harm while participating in physical activity. Actionable strategies focused on workforce capacity building including upskilling staff running the service in cultural safety and trauma informed practice. Participants also discussed the importance of engaging with bicultural workers and community connectors to build trust, facilitate referrals and co-facilitate sessions for people from non-English speaking backgrounds.

Key strategies acknowledged by service users and providers to create a service that is safe for people from different cultural and religious backgrounds include establishing women only times and spaces, privacy, and culturally capable staff. Previous research among culturally and linguistically diverse groups in Australia has found similar ethnic specific barriers including cultural modesty in the form of appropriate dress and privacy as a barrier for women’s participation [36]. This research suggested having women only classes, maintaining closed of sections of the gym facility and empowering women by placing them at the center of program development and encouraging them to take lead roles in programs [36].

Overlooking culture in healthcare has been identified as one of the most pertinent barriers to advancing the highest level of health care worldwide [37]. Previous studies have shown that cultural safety training can improve healthcare providers ability to understand and address the cultural and linguistic needs of refugees and improve health outcomes [38]. Yet, existing cultural competency frameworks in Australia for clinicians exclude exercise professionals [39], despite the critical role they play in health promotion, or focus solely on Aboriginal and Torres Strait Islander cultural competency [40]. In addition to improving health outcomes, making participants feel safe to express their identities can help individuals acknowledge and appreciate each other’s cultural values [41]. Strategies to create safe environments include having ‘cultural insiders’ as staff members within organisations and allowing people the opportunity to reconnect and develop their ethnic identifies [42].

Ensuring emotional and psychological safety was also identified as a priority in the current research. Therefore, consideration of trauma in the design and delivery of the service was recommended. Acknowledgement of the importance of trauma informed practice and the implementation into physical activity programs has been increasing in popularity [43]. During the co-design workshops, participants recommended that staff leading the physical activity sessions receive mental health training. Service users expressed a desire for staff members to understand and accommodate their mental health needs, and not to add additional pressure around attendance or performance if they were lacking motivation or experiencing distress. Among refugees, previous research has focused on creating trauma informed sports programs as opposed to physical activity [44]. Previous research has suggested that focusing on and promoting personal progress rather than performance, being available for informal time before or after sessions, inviting players to provide input to make the experience better can all be applied in contexts, such as that of the current research.

Accessibility

The EBCD process also revealed that the physical activity service needs to be easily accessible. Service users reported cost as a major barrier to participation since being in Australia and identified that the service would need to be little to no cost. This finding aligns with research on leisure time activity among refugees in Australia which showed that cost was identified as the highest barrier to physical activity, and has a significant relationship with reduced levels of participation [45].

Transport was also raised as a barrier and it was identified that many refugees and asylum seekers live approximately one hour from the community Centre via public transport and therefore would have difficulties accessing the service. Suggestions included outreach services to reach these priority populations or transport options, for example picking people up from the local train station was among the recommendations from the co-design participants. The timings of sessions also need to be flexible to accommodate changes in family and employment situations. Although service users did not report childcare responsibilities as a barrier, possibly due to many not having children, providers emphasised the significance of offering mother–child class options. This is important, given previous research among a group of Muslim women in Australia aligned with the service providers view, whereby women often perceived physical activity participation as conflicting with their ‘ethic of care’ towards family responsibilities, potentially leading to neglect of their role [36]. Therefore, the service must address geographical, linguistic, family and financial barrier to improve access for this population.

Support to Access Basic Needs

While the importance of physical activity as a means of promoting physical and mental well-being was acknowledged and valued by all participants, many reported having competing stressors that made it challenging to participate. Stressors included navigating the complex resettlement process, employment difficulties and a lack of mental and physical energy. It was identified during the co-design workshops the need to acknowledge the distinct differences in challenges facing those on secure versus temporary visas. Greater support should be considered for people on bridging visas who may be facing these additional stressors, living in limbo with uncertainty about the future [46].

Service users and providers reported that staff providing the physical activity service should be aware of differences in visa status between service users and establish strong referral pathways to facilitate referrals to appropriate services. Additionally, participants recommended translating written materials with information about other services to make them more accessible to refugees with limited English proficiency. Lastly, co-locating physical activity programs with other services such as food pantries, legal services, or welfare aid could facilitate easier access and participation for refugees who are dealing with multiple stressors. These recommendations highlight the importance of taking a holistic and collaborative approach to support the physical activity and well-being of refugees in the face of competing stressors, as anticipated during the services’ establishment. The findings also caution against creating a physical activity program in isolation as a standalone activity, disconnected from an established agencies designed to provide assistance with these complex needs.

Social and Community Connection

Prioritising social and community connection was identified as a core component of physical activity promotion for refugees and asylum seekers. Service users and providers recommended that the service incorporates group-based activities which are enjoyable and fun. Different modalities were suggested including yoga, Zumba and dance. This finding aligns with research showing that sport can foster integration and can promote sustainable engagement and social inclusion for refugees and participation in enjoyable group activities even in the short term has shown to strengthen bonding connections [47]. Consideration of soft entries to the program through culturally acceptable activities such as painting or gardening were also suggested to help engage people who may be hesitant to join. In addition, given the established association between depressive symptoms and reduced community engagement with one’s own community in their host country [48], supporting those experiencing mental health symptoms to engage may help to foster positive adaption for resettled refugees.

Partnership between the community center, providers and the community were identified in the interviews and focus groups, as critical to the long-term sustainability of a physical activity service. Participants identified that their involvement and those of the community were important in the decision-making process. Therefore, researchers, policy makers and practitioners should engage in continuous dialogue with refugees and asylum seekers throughout the design, implementation and evaluation of physical activity programs, rather than seek a ‘quick’ solution.

Physical Activity Literacy

A need to target physical activity literacy among refugees and asylum seekers and health service providers and was identified as a priority. It was also identified that there is not a shared understanding of the role of leisure time physical activity among service users but also their communities more broadly. Service users often identified that they were not confident on what exercises to do or how to do them and it was agreed that employing university qualified exercise professionals who can tailor exercises was important. The service providers suggested that this would also improve the credibility of the service and subsequently boost referrals from other health or psychosocial services.

It was also recommended that the physical activity service engages with community leaders and service providers to upskill them on the benefits of physical activity. These educators can play a critical role in promoting and role-modelling physical activity and it has been shown to improve the effectiveness of other chronic disease prevention efforts [49].

Reflections and Limitations

Using the EBCD methodology has been both challenging and rewarding. Barriers we faced included a lack of trust of the researchers by some participants due to their association with a university, fluctuating health needs of service users and difficulties with relationships between participants from diverse professional and life backgrounds. We also experienced challenges and lengthy delays scheduling focus groups, especially when a interpreter was needed, or participants were not confident with transport. Similar challenges have been experienced by other researchers adopting the EBCD process and conducting community-based research [29, 50, 51].

Despite these challenges, we are confident that this process involved authentic input and insight from people from refugee and asylum seeker backgrounds. The process has helped to build trust between the researchers, stakeholders and the community and provide a sense of autonomy and ownership in the process. Key learnings have included having flexible timelines and adaptable delivery methods to foster meaningful community engagement. For example, we were required to adapt some focus groups to an online format and/or have hybrid options. We have also learnt to be open to criticism and accountability at every stage of the process.

Importantly, this work has not only identified barriers to physical activity, but strengths in an underserved community and allowed solutions to be created using the combined strengths of lived experience with research methodology. We therefore argue for the use of participatory approaches such as EBCD methodology with people from refugee and asylum seeker backgrounds to develop more culturally relevant, gendered, and local understandings and to utilise these insights within program co-design and delivery.

It is however important to acknowledge there were limitations, given the co-design is tailored to one service at a single site in NSW, Australia. The sample size is small, the majority of participants were female, and the transferability of findings is limited given we only interviewed people from one geographic region. The gender differences in our research may be attributed to the fact that women are often disproportionately affected by migration [52], and likely face additional barriers to physical activity participation which may have motivated them to share their experiences and needs. The study was also led by a woman researcher which may have influenced participants sense of comfort in taking part.

Conclusion

EBCD provides a novel framework for engaging service users and providers and this study reflects on the outcomes and process. The findings from this process provide practical actions for implementing a physical activity service for people from refugee and asylum seeker backgrounds which ensures cultural and psychological safety, promotes accessibility, facilitates support to access basic needs, enhances physical activity literacy and fosters social connection. The resultant physical activity service which aims to be accessible and meet the needs of people from refugee and asylum seeker backgrounds living in Australia is being implemented and the evaluation is ongoing.