Personal and behavioural factors that influence physical activity in women living with metastatic breast cancer: a qualitative interview study

Abstract

Background

Women living with metastatic breast cancer can benefit from physical activity. Presently, there is an absence of research outside of quantitative investigations on the benefits of structured programs. To enable effective physical activity advice and services, it is important to understand factors that may facilitate or prevent engagement. We therefore explored with women with metastatic breast cancer: (i) personal and behavioural factors that influenced physical activity, and (ii) the role of healthcare services in influencing engagement in being physically active.

Methods

Recruitment took place at a metropolitan cancer centre from November 2019 to January 2020. Women living with metastatic breast cancer were asked to participate in semi-structured interviews about physical activity, covering health-specific factors, goals, barriers, enablers, and interests. Interviews were recorded, transcribed and thematically analysed.

Results

Twenty-three women completed the interview, with a median age of 60 years (IQR: 20) and median time since metastatic diagnosis of 3.3 years (IQR: 3.0). Physical activity ranged from regular participation in structured exercise to simple incidental activity. Seven themes organised into three categories were identified. The category ‘personal context’ incorporated themes on: (1) both cancer and non-cancer related health factors; (2) time, work and family factors; and (3) exercise history and preferences. The category ‘strategies for physical activity’ incorporated themes on: (4) self-efficacy, and (5) routine and incidental activity. The category ‘role of health and physical activity services’ incorporated themes on: (6) tailored education and services, and (7) specific metastatic cancer services and considerations.

Conclusions

Participants expressed diverse experiences with physical activity, with common notions on how physical activity is beneficial but difficult in which to adhere. Whilst some barriers to engagement in physical activity were unique to having cancer, many were not specific to metastatic breast cancer. For example, some participants emphasised specific considerations resulting from their disease, while others primarily reported on general factors such as being time-poor or having conflicting priorities. A patient-centred approach tailored to this group’s health and behavioural context may be effective for women who are currently inactive to engage in physical activity.

Introduction

The importance of physical activity for women diagnosed with breast cancer has been well established [1], evidenced by the benefits on physical function, cancer-related fatigue, and both general health and cancer-specific quality of life [1–3]. Until recent years, there has been a gap in research and practice for physical activity in women living with metastatic breast cancer as they were considered a distinct clinical population from those with early-stage or locally advanced cancer. There is now a growing case that physical activity can not only be safe for women with metastatic disease, but improves quality of life, fatigue, dyspnoea and physical function [4, 5]. Furthermore, the preventative effect of physical activity on metastatic progression has been observed in animal and some human studies [6]. Both clinicians and patients have expressed a need to increase the implementation of advice, education and services to facilitate physical activity for all cancer types and stages, inclusive of metastatic breast cancer [3, 7].

This recent surge of evidence exploring physical activity for metastatic cancers details the quantitative evidence for its benefits [4, 8], but there remains a lack of knowledge around patients’ experiences, perceptions and underpinning behavioural context. Presently, the literature around supporting physical activity for women with metastatic breast cancer primarily focuses on structured, supervised and/or group-based programs [9]. Such approaches to exercise, when achieving an appropriate dose (i.e. frequency, intensity and duration), are more likely to produce beneficial physiological adaptations compared to unsupervised exercise [9]. It is important, however, to ensure that programs are aligned with women’s needs and preferences, who have expressed a desire for lifestyle and behavioural support for unsupervised/community-based physical activity [10]. Such support is particularly relevant for those who find exercising independently to be preferrable or more feasible [7].

Health behaviours, such as physical activity, can be complex and challenging to change for both healthy and clinical populations, and particularly so for women living with metastatic breast cancer [11, 12]. Aside from the expected major cancer considerations, there are underpinning psychosocial nuances that affect physical activity participation. For example, attitudes towards the uncertainty and limiting perceptions associated with a metastatic prognosis can impact individuals’ inclinations for being physically active; these are explored and reported in detail in the companion article [13]. Building upon this context, the current study seeks to qualitatively explore the factors that impact physical activity behaviour to increase our understanding of why physical activity is or is not undertaken. Hence, the aim of this study was to investigate the personal and behavioural factors that impact activity for women living with metastatic breast cancer along with their experiences with physical activity-related healthcare services.

Methods

Design and setting

The study design, setting, participant inclusion criteria, recruitment, data collection and analysis are reported in detail in the companion article [13]. In summary, semi-structured interviews were conducted at an outpatient cancer clinic within a metropolitan tertiary referral hospital with women diagnosed with metastatic breast cancer who were ≥ 18 years old, could speak English, and were ambulatory and capable of self-care (Eastern Cooperative Oncology Group Performance Status 0–2) as evaluated by the recruiting medical oncologist. Recruitment took place from November 2019 to January 2020 (prior to COVID-19 disruptions). Sample size was determined iteratively based on data saturation. A consumer representative from Cancer Voices (https://www.cancervoices.org.au/) was consulted during the design of the study aims and methods. This project was ethically approved by the Royal Prince Alfred Hospital Human Research Ethics Committee (Protocol No X18-0403, HREC/18/RPAH578) and all participants provided written consent prior to participation.

Data collection and analysis

The semi-structured interviews commenced with open-ended questions, with prompts in place to refocus or progress the conversation. The questions and prompts covered topics of physical activity goals, interests, barriers, enablers and health-specific details, for example, “Tell me about your experiences/motivations with physical activity” and “Are there certain things that seem to stop you from being/remind and encourage you to be physically active?”. Demographic information (age, height, weight, functional performance status, time since diagnoses, current treatments, and comorbidities) were also collected prior to the interview using a brief online or printed form. Interviews were conducted, audio-recorded and transcribed by ML. Inductive thematic analysis following Braun and Clarke’s processes was conducted with input from all authors [14, 15].

Results

Thirty-three women were approached and invited to take part in the study. Twenty-three women participated in the interviews, with ten declining due to disinterest or lack of time. Demographic information is shown in Table 1; participants ranged from 34 to 84 years old and were diagnosed with metastatic disease between 5 months and 8.5 years prior (48% were de novo diagnoses). Sixteen women had concurrent comorbidities, the most common being chronic musculoskeletal conditions (e.g. arthritis and osteoporosis) (35%) and hypertension (30%). Interview durations were between 9 and 33 min, (mean: 21 min). Some participants performed regular and/or structured exercise, while others described their physical activity as physically demanding routine tasks such as shopping, incidental walking, and some forms of housework. As presented in Table 2, three categories covering seven themes were generated from the data analysis.

Table 1.

Participant demographic information

Study ID	Age (years)	BMI	ECOG Grade*	Years since metastatic diagnosis	Years since initial diagnosis	Current treatment(s)
1	77	32.9	2	4.0		Chemotherapy (oral)
2	58	21.8	1	0.8	4.4	Hormone therapy, HER2 targeted therapy
3	62	27.3	1	5.0		Hormone therapy
4	34	21.4	1	0.4		HER2 targeted therapy
5	49	24.7	1	2.8	10.8	Hormone therapy
6	53	22.0	1	2.6	5.0	HER2 targeted therapy, Chemotherapy (oral)
7	69	32.5	2	3.3		HER2 targeted therapy
8	51	23.5	1	4.5	18.0	Hormone therapy
9	72	29.8	2	3.0		HER2 targeted therapy, Chemotherapy (oral)
10	76	26.8	1	0.6	25.0	Hormone therapy, Radiotherapy
11	64	33.2	1	0.6	3.3	Hormone therapy, HER2 targeted therapy
12	60	23.2	1	8.5		HER2 targeted therapy, Chemotherapy (intravenous)
13	75	27.4	2	3.0	8.0	Hormone therapy, HER2 targeted therapy
14	74	30.3	2	5.8		Chemotherapy (intravenous)
15	40	22.5	1	2.8		Hormone therapy, HER2 targeted therapy
16	36	22.3	1	0.5		HER2 targeted therapy
17	53	21.9	2	7.8		Hormone therapy, HER2 targeted therapy, Chemotherapy (oral), Chemotherapy (intravenous)
18	84	24.5	2	8.0	18.0	Hormone therapy
19	72	21.2	2	3.3	13.0	HER2 targeted therapy, Chemotherapy (intravenous)
20	59	22.6	1	1.0	6.0	Hormone therapy, HER2 targeted therapy
21	54	21.0	1	4.0		Hormone therapy
22	68	26.8	2	6.7	8.2	Hormone therapy
23	50	25.1	1	3.3	5.0	HER2 targeted therapy
Summary	Median: 60 (IQR: 20)	Median: 24.5 (IQR: 5.2)	61% Grade 1	Median: 3.3 (IQR: 3.0)	Median: 8.1 (IQR: 9.25)	Single treatment: 12 2 + treatments: 11

*Eastern Cooperative Oncology Group Performance Status 1: Active but restricted in strenuous activity, able to carry out light activities, 2: Capable of self-care independently but unable to carry out any work activities, up and about for more than half the day.

Table 2.

Themes and categories

Category	Themes: ‘Physical activity is influenced by…’
Personal factors influencing physical activity	1. Both cancer and non-cancer related health factors 2. Time, work and family factors 3. Exercise history and preferences
Behavioural factors influencing physical activity	4. Self-efficacy 5. Routine and incidental activity
Role of health and physical activity services	6. Tailored education and services 7. Specific metastatic cancer services and considerations

Personal factors influencing physical activity

Theme 1. Physical activity is influenced by both cancer and non-cancer related health factors

The majority of women reported a link between specific health considerations and their physical activity. Prevalent cancer-related health limitations were raised as barriers to physical activity, including fatigue, pain, stress and poor mental health, impaired immune function, neuropathy and lymphedema. Fatigue and pain from both the cancer itself and related medication can be highly disruptive towards physical ability, demonstrated in Participant 9’s experience:

I’ve got two major lesions on my spine, the thoracic and lumbar, and that nerve pain radiates down my legs, so [physical activity is] difficult.” “Walking and just doing the general household shopping, walking around the shopping centre, it’s tiring, carrying stuff is, very painful… and the drugs that control the pain make me very tired as well… It’s a bit of a catch 22.

Several non-cancer related factors were also raised as substantial barriers, such as chronic musculoskeletal injury, general deconditioning and diabetes. When reflecting on health-related barriers, some women pointedly clarified that in their personal experience, cancer was not an impactful factor and rather, other general health problems were described as the more important factors. Participant 1 expressed this when she said: “For me, if someone says ‘how are you?’, I say ‘well, my shoulders hurt’. I wouldn’t say the cancer’s bad, I’ve got no problems with that at all, really.”

Theme 2. Physical activity is influenced by time, work and family factors

Factors around time availability, particularly in relation to work and family commitments, were frequently discussed. It was common for participants to change or discontinue their work pattern after their cancer diagnosis, which had an impact on physical activity. For some, such as Participant 3, work was previously a barrier by limiting time and energy and transitioning to not working facilitated new exercise habits: “In the last few years, after this breast cancer diagnosis and after I’ve stopped working, I had more time. So, I decided I’d go to the gym, now I’m going to the gym regularly, I hadn’t been doing that before.” For others, such as Participant 15 (English as an additional language), their work routine provided opportunities for regular physical activity, which had to be replaced after transitioning to not working: “At work I [used to] try during my lunch, I do walking, so it’s like 5 kilometres or 3 kilometres walking during lunch time, but then I quit my job last month… and I feel like, I want to join the gym now because I feel like I don’t go to work now every day, I don’t do any physical activities.”

Participant 5 articulated that the responsibilities of parenting and work severely limited available time to be physically active: “I have four kids and work two jobs, so I do a lot. I would never go, ‘I might go for a jog’.” However, there were opportunities within her job to be active without the competing priorities of household tasks: “Part of my [disability support] job is to walk with [the client], so that’s nice, I can’t feel torn between all the things that I have to do because I’m actually at work. Whereas if I’m at home, I’ve got to do all these other things… so I can’t be at home cleaning or something anyway.”

Theme 3. Physical activity is influenced by exercise history and preferences

For most women, their current physical activity habits were influenced by the consistency and suitability of their exercise history. Women who described a consistent history of exercise reported ongoing engagement, like Participant 3: “I’ve always been reasonably active, I used to play sport as a kid, and then probably less as I got a bit older, but I’ve always done something, even if it’s just walking every day, swimming regularly, I’ve done that for quite a few years now.” Similarly, women who found past experiences to be unsuitable reported less inclination to be active. Specifically, a few women, such as Participant 1, found their past experiences with gym-based exercise to be unfavourable or inappropriate, and hence a barrier to participating again in such exercise: “I don’t think I found [the gym program] really helpful… I can’t do push ups because of my shoulders, and I can’t stretch [my arms overhead], so all the formal exercises you get at a gym, most of those I can’t do… There was no point in doing the workout if I can’t actually do the exercises properly.”

Behavioural factors influencing physical activity

Theme 4. Physical activity is influenced by self-efficacy

Some women displayed high self-efficacy to navigate situations in which cancer-related impairments impeded routine tasks like work, chores or commuting that included walking. They were accepting of their longstanding limitations and, rather than avoiding such tasks entirely, responded constructively in order to physically maintain their daily routines. Common approaches included having an awareness of fatigue to plan adequate rest, like for Participant 8: “Sometimes if I work two, three days in a row, I do feel it. I don’t push myself; you adjust yourself around that. I’m like ‘okay, I’m going to slow it down’, I know that today, I’m a bit low on energy, I’m just going to take it easy… I’ll have an early nights’ sleep.” Participant 18 similarly used medication prophylactically: “If I do have to walk, I take pain tablets before I leave home… so that I can walk to the station and stuff like that without getting in agony halfway there.” When feeling inclined to avoid physical activity, Participant 12 engendered motivation by positively reframing how she perceived the cost versus benefit of exercise:

When you analyse the actual time you are in the exercise class, it’s minimal, three times a repetition of doing it 15 times, two kilos. The difference that makes when you analyse the actual time expended for what you get in return, it’s extraordinary. And how we resist it, we can be as human beings, it’s crazy. So, you know, putting it into that context.

Theme 5. Physical activity is congruent with routine and incidental activity

Of those who were regularly active, most women raised the importance of having a routine for maintenance. For Participant 3, a primary facilitator for developing and maintaining a routine was making simple commitments rather than over-deliberating the behaviour:

I think it’s just getting into that routine and not overthinking it too much… it suits me better if I just do it, if I think about it too long, I might not be so inclined to do it… I think routine is really important, just decide this time and that’s what you do. I’m glad I’ve got into that routine. And now that I’m in it, I don’t think that I’ll get out if it.

Another common facilitator was exercising regularly at the same time of day; Participant 14 integrated her lymphedema rehabilitation exercises within her morning routine: “I’ve been doing that from, three years now… It’s just like getting up and having breakfast, to get up and do this first, and then you have breakfast, yeah.” Many women also consciously incorporated incidental physical activity within their routines, as demonstrated by Participant 4: “I always take the stairs, and I walk here [to the hospital] as well. I only live in [a local suburb] so it’s a 20-minute walk, so I walk here every treatment, for added exercise… and if I’m thinking, ‘oh, I need to get some groceries’, instead of driving, I’ll walk to the closest supermarket.”

Role of health and physical activity services

Theme 6. Physical activity is influenced by tailored education and services

Women raised the need for a nuanced, individualised approach to the promotion of physical activity. The types of education that were suggested to be beneficial ranged from foundational behavioural advice for gradually increasing physical activity to detailed information about optimising exercise parameters (i.e. frequency, intensity, duration), according to their current habits and readiness towards physical activity. Upon reflecting on her personal experiences, Participant 12 suggested that:

People are fragile and all sorts of different headspaces, so, maybe how to integrate exercise into your day, [like] ten minutes can be enough, three times during the day, which people probably do and not realise. And then they can feel, ‘okay yes, and then maybe I’ll increase a bit more’, you don’t have to be linear… Integrating into a lifestyle of who that person is, not change their lifestyle, but how to make it work… That might encourage them to just do a little bit more, like be more aware of your heart rate, get that up a bit.

In contrast, Participant 3 was participating regularly in structured exercise and wanted to better understand specific exercise prescription principles: “I suppose I would like to know how much to do of what sort of exercise? Like what’s most beneficial, aerobic type of activity, or weights, resistance, strength type stuff, how many sessions a week… and how much to do… what’s the optimum kind of intensity to get the benefit.” There was agreement from some women, such as Participant 8, that group sessions would be beneficial towards social support and motivation: “Maybe if there was a structured exercise program people can follow, it’ll be good. A lot of people don’t know where to start… and some people do need the motivation, so if it’s a nice little group together encouraging each other, similar age group of women with the same problem, I think that helps.” Participant 12 however valued exercising independently in account of the flexibility it afforded: “I try and go once or twice a week to an aerobics class, but I’m just too unreliable… I resent turning up at a time all the time, so with swimming… [I can] choose to get there in terms of the better time.”

Opposing views were expressed in regard to a hospital-based exercise service. Participant 12 appreciated the convenience and integration from participating in the cancer centre gym program: “It’s good that the facilities I can have right here at [the hospital], that is just fantastic… If I was having some radiation, I would go to my exercise class and then do the radiation.… [it’s] just the one-stop shop really.”, while Participant 15 (English as an additional language) preferred to be disassociated from the hospital setting due to its connection to the disease, instead preferring to exercise at home or in the community: “You don’t want to stay [at the hospital] for long. I don’t know like other people think, they have the massage or whatever, but if I go here, I don’t want to stay here longer… [Even though] there’s gym down there, we don’t want to stay in the hospital any more longer… we feel like we’re sick in the hospital.”

Theme 7. Physical activity is influenced by specific metastatic cancer services and considerations

Several women raised that they greatly valued being able to participate in cancer-specific physical activity services, or that they desired such services but were unaware of how to access them. Even for Participant 12, who described her cancer and treatment symptoms as largely under control, she greatly preferred the assurance and education received through a cancer-specific exercise service over general community services:

It means I can talk [to the cancer exercise physiologist] and download a bit of how I am feeling, and then that can give me some insight. Or she can make a suggestion and then it spurs you on… And because they’re so qualified and they know about cancer, the way they talk to you is not just a [general exercise professional] person.

This was heightened for women with more complicated cancer symptoms, namely pain from bone metastases. Participant 5 reported that she felt that she did not have adequate education or instruction around how to manage her pain, especially within the context of physical activity or any physical tasks:

I feel really confused about exercise actually… People have talked to me a lot about, if you have stage 4 cancer and you exercise, it can actually help. But I don’t know what I should do, like I don’t know what I can do [versus] what will hurt me… I think if I could see a physio [who would] medically know what’s going on in my body and they’re saying that I can do these exercises, then I believe it, more than a [general exercise professional].

The need for improved screening and safety was highlighted by Participant 9 when she described how pain from her bone metastases was misdiagnosed and treated in an unsafe manner: “I was going to the physio to try and get rid of the pain, and they were telling me that I had this and that, doing fairly severe chiropractic moves and massages and so on… they could have done further damage because the lesions in that part are very close to the spinal cord.”

Discussion

This study provides insight into the personal and behavioural factors that influence physical activity for women living with metastatic breast cancer. Physical activity habits varied, with some women participating in regular exercise, either independently or with a structured program, whereas for others, the extent of their physical activity was primarily completing errands and household tasks. This level of physical activity appears consistent with quantitative measures of physical activity [16], and the activity type was primarily determined by personal preference and previous exercise history. Cancer-related health factors such as fatigue and pain were raised frequently, but interestingly, for several women, many factors were not unique to metastatic breast cancer. In such cases, behavioural barriers and facilitators of time availability, competing responsibilities of work and family, and presence of a routine, were described as equal or more influential than cancer-specific factors. Upon reflecting on their personal experiences and needs both past and present, women suggested several ways that health services can support physical activity according to individuals’ readiness for behaviour change. Inactive women may benefit from advice for gentle, gradually increasing physical activity paired with strategies to navigate health or behavioural barriers. Women who are more prepared or already active could be instructed on how to optimise their exercise parameters for safety and effectiveness.

The findings from the current study indicate that many factors that influence physical activity for women living with metastatic breast cancer are not unique to the specific type or stage of the disease. Although advice and prescription are to be tailored for safety and efficacy to each individual and their disease profile, previous research on the predictors of physical activity engagement across different cancers are likely adaptable to patients with metastatic breast cancer. Research on such factors across other cancer types and stages commonly measure predictors for physical activity adherence, such as health-related quality of life, symptoms and severity, and behavioural and social factors [17, 18]. In alignment with these previous findings, women from the current study who received intensive treatments and experienced high symptom burden tended to depend more on having an extensive history of exercise, higher motivation and more support from exercise professionals to adhere to physical activity routines. Similarly, for uncomplicated cases, the relevant factors included ongoing adherence to routine and increasing exercise knowledge and skills. An example of an intervention originally designed for early-stage cancer that was effectively applied to patients with metastatic cancer was the physical activity advice component of a cognitive behavioural therapy intervention that improved fatigue and physical function [19]. If factors that influence physical activity observed across mixed cancer patient populations can largely be applied for patients with metastatic cancer, with the necessary disease-specific considerations, the implementation of effective physical activity services could be accelerated.

The primary distinguishing challenge for women living with metastatic breast cancer, in contrast to those with early-stage cancer, is metastatic site-specific sequelae. Consistent with population rates of site occurrence [20], a number of participants reported specific issues related to bone metastases, particularly in the axial and hip bones. Pre-clinical findings have established that mechanical loading with exercise can reverse metastatic disease-induced bone loss [21], but navigating pain and fracture risk to translate this to practice is intimidating for both patients and clinicians [22–24]. In response, recent international efforts have taken place to garner consensus for recommendations and preliminary guidelines [25]. At the core of these recommendations is comprehensive, patient-centred exercise prescription, with rigorous risk assessment (i.e. bone health, pain, and oncologic treatment) and consideration of patients’ overall physical profile (i.e. physical activity, muscle strength and joint health) [1, 26]. Despite increasing research in support of exercise for bone metastases, the experiences of women in the current study show that, in these instances, such services were strongly desired but not available. Recommendations from evidence is complex and can take several years to permeate through policy and healthcare management to become standard practice [27]. Until then, per the established exercise and oncology guidelines [1, 2], patients can be educated broadly on the benefits of physical activity and safety considerations for pain severity and fracture risk. Higher risk cases may still be able to be physically active but require referral to physiotherapists and exercise physiologists with cancer expertise [2, 26].

In addition to the clinical aspects of physical activity, some women may need to address barriers that are not specific to their disease. The most pertinent of such barriers were the lack of time and energy due to competing priorities, such as work and family responsibilities, and not having the knowledge or strategies to change physical activity behaviour. Behaviour change techniques have been developed to address such barriers, and have been compiled and organised as a taxonomy that can be mapped to individuals’ behavioural readiness and needs [28, 29]. For example, for women who described lacking time or changing of work pattern, using associative prompts and cues to facilitate initial stages could be helpful, followed by substituting and generalising physical activity into their routines to form new habits. Behaviour change techniques can also be used to increase women’s understanding of how the benefits of exercise can be personally relevant to them. Detailed, patient-centred education to compare the positive and negative outcomes of being active versus inactive, linked to successful examples and forecasting future expectations could reinforce how physical activity is of benefit. Behaviour change techniques can also be used to address previous negative experiences in which either the exercise type or programming was not suitable for their personal or clinical needs, leading to an unfavourable impression on physical activity overall. To regain a positive outlook on physical activity, applicable techniques include tailoring advice to be aligned with patient goals and preferences, and grading tasks to build up beliefs about capability. Notable preferences that differed among individuals were for gym-based or structured exercise versus lifestyle physical activity, hospital versus community-based, group versus independent, and types of physical activity which were usually dependent on exercise history. Clinicians may be able to encourage physical activity among their patients by individualising the behaviour change techniques to target barriers that are identified.

The findings from this current study carry with it some considerations. Criteria for participation excluded women who had limited capacity for ambulation and self-care. Such women may still benefit from physical activity but are likely to have different factors that impact physical activity due to more intensive clinical considerations, which are outside the scope of this study. Furthermore, the recruitment site and geographical location of participants provide access to a variety of physical activity-related services and facilities. Factors that affect physical activity are likely to be different in contexts with less accessible services.

Conclusions

In conclusion, both cancer-specific and general behavioural factors impacted physical activity for women in the current study. Women who live with metastatic breast cancer have diverse clinical and behavioural circumstances that affect physical activity, linked to their disease status which may evolve over time as prognoses improve or decline [30]. The perspectives from clinically complex as well as relatively uncomplicated cases provide insight into the different types of behaviour change strategies and health services that could increase physical activity, highlighting the importance of tailoring approaches to facilitation. General physical activity behavioural support such as education, monitoring and feedback can readily be implemented into usual care within outpatient clinics [31], and physical activity specialists such as exercise physiologists and physiotherapists can be better equipped with the knowledge and skills to address metastatic cancer-specific factors, in particular, bone health [12].

Authors’ contributions

ML, SK and JY developed the study aims and methods, and JM provided qualitative methods expertise for designing the data collection and analysis process. JB screened and recruited all participants, and ML performed all the interviews and transcriptions. Lead by ML, all authors were involved in the data analysis and preparation of this manuscript.

Funding

This project was conducted as part of the doctoral research program for Mark Liu. He is funded by the Sally Crossing Memorial Scholarship.

Data availability

The datasets generated and/or analysed during the current study are not publicly available, as full interview transcripts may contain identifiable information. Some additional data are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

This project received ethical approval from the Royal Prince Alfred Hospital Human Research Ethics Committee. All methods were performed in accordance with the relevant guidelines and regulations, including the obtaining of informed consent for every participant. The Protocol Number is X18-0403, HREC/18/RPAH578.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.