‘It’s becoming the centre of everything’: a qualitative study using Patient Journey Mapping to examine the impact of social factors on healthcare interactions and disease outcomes for people living with rheumatoid arthritis

Abstract

Objectives

Disadvantageous socioeconomic status (SES) is associated with poorer disease outcomes for people living with rheumatoid arthritis (RA). We aimed to determine how people living with both RA and socioeconomic disadvantage navigate the healthcare system. In particular, we aimed to determine how their SES influences their interactions with the healthcare system and how it modifies the care they receive, influencing health outcomes.

Methods

This was a qualitative study utilizing patient journey mapping techniques. In-depth, semi-structured interviews were conducted by two interviewers. Interview transcripts were coded, and reflexive thematic analysis (TA) was undertaken through sequential rounds of theme generation until thematic consensus was achieved. Themes were synthesized and interpreted using the cumulative complexity (CC) model and candidacy framework (CF).

Results

Following purposeful sampling, 42 individuals met inclusion criteria, and interviews were ultimately arranged with eight individuals [50% female, median age 58.5 (IQR 56–66.5)]. Interviews lasted mean 88.5 min (SD 13.6). Most participants were unemployed and receiving social benefits. Six key themes were identified: the challenges of acknowledging and attributing symptoms, building health literacy, maintaining effective relationships with healthcare staff, managing treatment challenges, living with trauma and adapting to chronic illness.

Conclusion

Individuals with low SES have unique experiences of RA care, influencing all aspects of their RA health journey. Using the CC and CF, the themes identified in this study highlight actionable strategies to improve care pathways to better support individuals living with greater cumulative complexity and disadvantage.

Key messages.

• The qualitative methodology, Patient Journey Mapping, enables detailed analysis of individuals’ healthcare interactions and experiences

• People living with rheumatoid arthritis and socioeconomic disadvantage experience unique challenges in managing their disease

• Addressing this health inequity may require changes to care models at primary and specialist care

Introduction

Social determinants of health (SDOH) have significant impacts on health outcomes, including among people living with rheumatoid arthritis (PlwRA). Factors including low income, unemployment, lower educational achievement or lower area-level socioeconomic status (SES) are associated with poorer patient-reported outcome measures (PROMs) and greater disease activity in PlwRA [1–5]. This disparity in outcomes represents an important health inequity, present even in Australia [6], where a universal healthcare system enables broad access to high-cost therapeutics for PlwRA, including biologic and targeted synthetic disease-modifying antirheumatic drugs (b/tsDMARDs).

Three phases of health disparities research have been described [7]—‘detecting’, ‘understanding’ and ‘reducing’—with the second phase involving the identification of ‘particular mechanisms that can be acted upon to reduce or eliminate the disparity’. Numerous proposed mechanisms underlying healthcare disparities in PlwRA have been suggested [8], including delays in presentation, limited access to healthcare or medications, though commonly used quantitative methods have yet to confirm these. Biological factors and comorbidities (such as obesity) also contribute [9], and there are likely to be other causal factors not yet considered. Alternate research approaches are therefore needed to gain an in-depth understanding of the drivers of the inequities in RA outcomes, particularly approaches which are phenomenologically open and inductive, enabling the complex, lived realities of PlwRA and low SES to be captured without predefined assumptions about the mechanisms underlying these disparities.

Qualitative research involves an interpretive approach whereby participants’ experiences are documented and contextualized in an attempt to make sense of phenomena through the meanings people bring to them [10]. Patient (also ‘health’) journey mapping (PJM) [11] is an emerging methodology enabling greater understanding of how individuals experience disease and interact with the healthcare system to access care. PJM lacks a singular definition: for the purposes of this study, we define PJM similarly to Curry et al. [12] as ‘a person-centred process of understanding the barriers, facilitators, experiences and interactions with services and/or health outcomes for individuals as they enter, navigate and experience the health system’. PJM is therefore an appropriate methodology for furthering our understanding of how individuals, particularly those more susceptible to poorer RA outcomes such as those living with low SES, interact with the healthcare system. Although PJM focuses on a specific disease and associated healthcare interactions, this methodology is flexible and enables the consideration of how other factors, such as an individual’s personal background (including language and cultural background), geographical context, socioeconomic resources and comorbidity, may influence interactions with the health system and combine to modify overall health outcomes [11]. This focus differs from a prior mapping study which focused on process factors and benchmarking rather than individuals’ unique lived experiences and examining their social backgrounds [13].

Health care in Australia is delivered through two parallel systems. In the ‘private’ system, healthcare providers charge patients directly, and rebates paid to individuals by universal taxpayer-funded health insurance (‘Medicare’) do not always cover the full costs of services, frequently incurring an out-of-pocket cost (‘gap’), payable by the consumer. In this system, however, individuals have greater choice and flexibility and can choose their doctor. Public services are funded separately, however, and services provided here do not incur gap payments, though individuals have limited choice in who they see. Our study focuses on the experiences of individuals treated within this latter system.

The primary aim of this exploratory study was, therefore, to determine how people living with both RA and socioeconomic disadvantage navigate the healthcare system. In particular, we aimed to determine how their SES influences their interactions with the healthcare system, and, how it modifies the care they receive, to influence health outcomes.

Methods

We utilized PJM as our data collection methodology and undertook reflexive thematic analysis (TA) on this data [14]. A critical phenomenological theoretical orientation underpinned the study, as detailed below.

Participant recruitment

Purposeful sampling was used to recruit participants [15] with indicators of socioeconomic disadvantage from RA-specific clinics at two public hospital outpatient departments. Potential participants were identified by either review of electronic medical records of weekly RA clinic lists (each with 40–50 patients attending for routine care), or in discussion with nursing and medical staff who had knowledge of individuals’ background. Once identified, patients were approached by the primary investigator (OR) or clinic rheumatology nurse. Indicators of potential socioeconomic disadvantage considered included: being unemployed, manual labour or service occupations, low income/poverty, lower educational achievement or cultural and linguistically diverse (CALD) background. Low SES based on census-tract characteristics was also used [16]. As an additional strategy to focus recruitment, most participants also completed a social screening tool [17] with affirmative responses highlighting greater social need, highlighting suitability for participation (Supplementary Table S1, available at Rheumatology Advances in Practice Online). All participants were offered travel reimbursement by way of taxi vouchers to facilitate participation. An amendment to our initial protocol was accepted by the Human Research Ethics Committee (HREC) in January 2024 to offer an AU$100 supermarket gift voucher to incentivize participation.

Research team and interviewers

The research team comprised of an individual with lived experience of RA and experience as a clinician-researcher (AB), a qualitative research specialist with extensive experience in social and health services research (EH), a post-doctoral scientist with extensive experience in clinical musculoskeletal research (CR) and rheumatologists and clinician scientists with prior research experience or training in qualitative research (OR, RB, CH).

Each interview was conducted by a panel of one male (OR) and one female interviewer (either AB, EH or CR). Using two interviewers acknowledged that gender differences can influence rapport and disclosure in interview relationships, given our anticipation that PJM content would include discussion of social hardship and related experiences. Additionally, differing positionalities of interviewers also enriched data generation and allowed for subsequent interpretive dialogue between co-interviewers. The interviewers had no prior established clinical relationship with participants. Interviewers firstly introduced themselves to participants and provided detail regarding their professional backgrounds. Interviews were held in a private room at an arthritis patient support organization (seven interviews), and one participant attended virtually (regional hospital telehealth room).

Conduct of interview

Multiple types of PJM have been described, including some which are grounded by positivist (quantitative) methodology. As this study focused on how RA patients, living with low SES, interacted with the healthcare system, we developed an ‘RA journey’ diagram (see Supplementary Fig. S1, available at Rheumatology Advances in Practice Online) that was used to help orientate participants to this purpose. This diagram was developed in consultation with our co-researcher with lived experience of RA and informally presented to consumers with RA for feedback, prior to participant recruitment. This method is similar to that used by other groups undertaking PJM [18]. As obtaining control of active disease in the early phases of RA is particularly important [19], the emphasis on chronology and sequential interactions that PJM and our adoption is particularly important. After introductions, the participant was invited to describe their background and early experiences of RA. The interviews were subsequently strongly ‘participant-led’ and open to the direction of their narrative, and the diagram was only occasionally required to help re-orientate participants to the topic. Follow up questions and gentle redirection were used as required.

Audio-recording of interviews was undertaken with two devices, with participant verbal and written consent. Recordings were professionally transcribed.

Analysis

Interviews were iteratively coded, and reflexive TA [14] commenced following the completion of the second interview. Themes were inductively developed using the codes rather than being predefined. Meetings of co-researchers were held during the data collection and data analysis phases to interrogate and develop the themes being generated, with these discussions serving as a resource for reflexive interpretation. Because reflexive TA understands themes as generated through interpretation rather than as a finite set to be exhausted, we assessed adequacy of data using information power [20] rather than thematic saturation. Features of the study supported high information power, including a focused and specific aim and a purposively recruited sample with substantial depth of dialogue in interviews, half of which were conducted with a co-interviewer with lived experience of RA. Additionally, the candidacy framework (CF) [21, 22] and cumulative complexity (CC) model [23] were applied during the final phase of the TA to interpret the findings. We therefore judged that the data were sufficient to develop a rich, theorized account to address the study’s aim.

Interview transcripts were imported into Nvivo 20 (for Mac), which was used to manage the transcripts, coding of transcripts and for the TA. Study participants were not involved in checking the findings of the TA, and transcripts were not returned to participants. Coding of interview transcripts was primarily performed by OR, and the initial (after the second interview) and final coding trees are included as Supplementary Tables S2 and S3, available at Rheumatology Advances in Practice Online.

The Consolidated Criteria for Reporting Qualitative Research (COREQ) [24] was considered in preparing this manuscript (See Supplementary Material).

Ethics approval

Approval to conduct this study was obtained from the Central Adelaide Local Health Network HREC (ref: 18250).

Results

Recruitment and demographics

After reviewing RA clinic lists between November 2023 and February 2024, 42 individuals were approached to determine their interest and suitability for participation. Of 33 individuals interested and suitable for participation, 25 did not reply to follow up phone calls or text messages, declined participation after discussing the study, or a time for the interview was set but did not proceed because of participant withdrawal.

Eight participants were interviewed with a mean interview duration of 88.5 min (SD 13.6). Participants’ median age was 58.5 years (interquartile range 56–66.5) and 50% were female (Supplementary Table S4, available at Rheumatology Advances in Practice Online). Average disease duration was 10.5 years (SD 5.6). Most participants were not currently employed (75% unemployed or retired), were currently receiving social security benefits (87.5%) and reported current/prior manual work roles (75%).

After coding and TA, six major themes were developed. These were: (i) The challenges of acknowledging and attributing symptoms, (ii) Building health literacy, (iii) Maintaining effective relationships with healthcare staff, (iv) Managing treatment challenges, (v) Living with trauma and (vi) Adapting to chronic illness.

Theme 1: the challenges of acknowledging and attributing symptoms

This first theme addresses the central issue of PlwRA’s symptoms not being given appropriate significance or relevance for a possible new diagnosis of RA by either the participants themselves or their healthcare providers (Table 1). Multiple factors appeared to contribute to this: alternative explanations generated by participants or their healthcare providers provided tangible grounds for perpetuating symptoms being deprioritized. These included ascribing symptoms to current or prior occupational factors (having had prior workplace injuries or undertaking manual labour) and stressful life experiences [25] (e.g. moving house, emigrating overseas). These alternative explanations were readily accepted as they were perceived as less worrisome and involved less ‘fear of the unknown’, being more tangible than a new RA diagnosis.

But we just thought it was because I’d sold my house, moved - and it was all to do with me having that accident, because I had a shoulder problem, knee problem. She [participant’s GP] just thought I’d done too much. [#1.A]

Lacking prior knowledge of RA was acknowledged as a contributor to delay in diagnosis. This, in combination with inconsistent or differing opinions from different general practitioners (GPs), often led to premature diagnostic closure with alternative ‘trivial’ or self-limited diagnoses being favoured over RA.

Me with no knowledge of what rheumatoid arthritis was, how do I convince a doctor that the pain in my knees is not just normal arthritis, which is what he thinks it is? [#2.A]

Table 1.

Theme 1: the challenges of acknowledging and attributing symptoms.

Quotations
Before diagnosis of RA
#1.B ‘… I started not knowing what was wrong with me but just not feeling well and a sore hand every now and then or a sore foot. I think it was coming on. I’m not sure. But I also was moving house. I was doing a lot of other things. I’d had an operation on my knee from work. We just thought, with my leg, it was that. It was just things like that.’
#2.B ‘… I don’t think arthritis ever entered my head.’
#2.C ‘ [RA is] something I knew nothing about, until I got diagnosed.’
#3.A ‘… I went through all those [days] thinking it’s carpal tunnel. We got a nerve conduction test, which came out as—it wasn’t very severe… So, I had all those things, like physiotherapy, steroid injection. I went through my first carpal tunnel surgery, which failed. There were no improvements. I had very bad pain in my shoulders over there, during all this time. Then I underwent my second surgery after maybe less than two years. Then that failed too, and then the doctors thought maybe something else is going on. Then rheumatoid was diagnosed that way. Then all the blood tests were done for them and [name of rheumatologist], she did ultrasound of these joints to see—and then it was diagnosed that yes, I have RA.’
After diagnosis of RA
#1.C ‘…when I was starting to have the injections [biologic DMARD], I remember saying to my doctor, but why am I still in pain if my rheumatoid levels are good?… I don’t know if I have pain from rheumatoid a lot or if it’s the fibro or my now sugar diabetes, so that becomes very hard.’
#3.B ‘[Doctors] do listen to me, but … anything I have would be—it’s because of RA … For example, this trigger finger. GP said it’s because of RA. Rheumatologist, no it’s not because of RA. The other—this time this rheumatologist, yes it because of RA. So, I am getting such confused messages. What is because of RA and what is not?’
#8.A ‘I don’t think [the GP] wants to do anything yet because I’m getting these needles [biologic DMARD] done, and everything. Yeah. … [the GP] wants to see about fixing it a bit with these needles you know. [The GP’s] going to wait and that … I don’t know whether to continue with the needles or…’

Theme 2: building health literacy

This theme focused on aspects of participants’ health literacy (HL) which impacted their subsequent healthcare journeys (Table 2). A major element of this theme centered around participants’ capacity to ‘negotiate’ successfully for their own healthcare, and how this skill was impacted (either positively or negatively) by previous interactions with the healthcare system and social contexts. For example, many participants had previously experienced the health system personally in non-RA contexts, or supported family members through their healthcare interactions. This prior experience is understood to be relevant as knowing details of what can be expected or asked of the health system is not necessarily made explicit at the point of care.

Table 2.

Theme 2: building health literacy.

Quotations
#6.A ‘[T]he system was kind of frightening for us, as well, because it wasn’t straightforward’
#3.D ‘I’m not as afraid of the system [anymore], I should say. Because my concern was my care. I need to get care. I know I need to see the doctor after three months. If I say something, they may just put me back, and I really want to see this doctor.’
#3.E ‘[For example in India , ] I want a physiotherapist today. This time is not suitable. I’m working until 5:00 I want something after 5:00. Okay that’s possible. Whereas here it’s not possible. You have to fit in everything. Your appointments and everything in your work schedule. So, it is too much. You have to go to work. You have to take a day off. Then only can you go to your appointment. Whereas back in India you can go and meet a specialist after work. You don’t have to take a day off. Or even physiotherapist after work.’ [#3 MK]
#6.B ‘Yeah. If the cost is not a problem, I would love to explore some therapy, hand therapy and stuff, but only thing is, given the timeframes, as well, it has to fit in with my other responsibilities. If that’s the case, yes. I would love to have something.’
#7.A ‘I’m not going to take no for [an] answer…’
#8.B ‘I wanted to talk to that doctor, he told me to ring … He gave me his number and everything and this lady must have answered. … You just got [told] to put up with it, and wait and wait until your appointment comes. … Yeah, I get very frustrated very angry with people. … They don’t listen to me, how I’m going, and everything, and tell you, are you taking your tablets? I said, my daughter does everything. … my daughter knows what she’s doing’
#6.C ‘[I]f there is something that needs to be done or get help in the medical system, me or my wife, we don’t just say no to nothing. If someone says “no”, it is not … we are very vocal…’

Participants who had emigrated to Australia described different experiences (and expectations) of care compared with their countries of origin. They spoke of uncertainty about expectations of them in their interactions with healthcare providers in Australia, extending to fear of repercussions should they raise questions in appointments or ‘speak up’ for their own wishes.

I didn’t know this is how the system works here … maybe I’m not sure whether I should speak back to the doctor here. Will it impact [my care] here? Will they put me back in the queue? Will they … make my appointment say six months later instead of three. Maybe that’s the reason I’m not talking to them. … I’m keeping quiet. [#3.C]

Through the course of their illness or experience in dealing with the healthcare system, some participants had developed and refined self-advocacy skills. Examples included speaking up for oneself, requesting a second opinion, or bringing a support person to their appointments.

Despite building personal HL, participants described instances where attempts at advocating for their needs (e.g. reaching out for advice in the setting of an RA flare) were met with ineffective responses from the clinic or hospital. One participant’s self-management skills were questioned and the cause of flaring symptoms presumed to be non-adherence to RA treatments. Another participant struggled with limited appointment availability for physiotherapy, which was incompatible with her own work hours, in contrast to greater service accessibility in her home country.

Theme 3: maintaining effective relationships with healthcare staff

The importance of effective relationships between healthcare consumers and providers at every point of contact was frequently raised by participants in this study (Table 3). Effective relationships led to a feeling of validation and positive health outcomes. Continuity and consistency in clinicians enabled participants to establish rapport and trust. Discontinuity led to greater ‘friction’ in interactions, meaning relevant elements of participants’ medical history could be omitted. Having to frequently revisit one’s medical and social history when accessing healthcare was consistently identified by participants as exhausting, and having to ‘retell their story’ to a clinician unfamiliar with one’s medical history was particularly effortful, reducing participant satisfaction with the interaction

I’m tired of retelling my story over and over again. [#2.D]

Discontinuity was frequently encountered and was either related to staff turnover (e.g. rotation of trainee doctors, common in teaching hospitals) or seeing GPs available at short notice, rather than a consistent GP. Being able to see a consistent GP was reported as particularly difficult for participants living regionally. Even among those with a consistent GP, there was frustration in providers not being aware of elements of their medical history that had been reported previously or to different specialists. One participant felt that they were ‘caught in the middle’ of communication difficulties between their multiple healthcare providers.

Table 3.

Theme 3: maintaining effective relationships with healthcare staff.

Topic	Quotations
Consistency in healthcare provider	#1.D ‘That’s one thing I hated along the way as well was every time you had to go to all the doctors, you had to tell them your story again and again and again. You just get sick of telling [your story]—because you’ve got to see different doctors where I guess if you’re in a private thing, you see the one doctor. He knows from the start. That’s why I like having the same GP, because he gets to know all about you. You don’t have to keep explaining stuff.’ #2.E ‘It’s all different. They say different things. Yeah. Interviewer #1: Do they? Participant: Yeah. Interviewer #1: That must be confusing? Participant: Yeah, it is … every time I go to the doctors I’ve got to dredge up this whole—it’s all too hard, you know? … I can’t go in there and say this, this and this to somebody that I don’t know, I’ve never met before and if I don’t get a good vibe off them instantly, pretty much the conversation goes nowhere.”
Trust and rapport	#3.F “The doctor said take pictures. Don’t they really trust me that what I’m saying is truth or not?” #1.E “He actually said something really stupid to me once. He said, oh, it’s like breast cancer. You’ll get over it and you’ll be out there working again.” #5.A “I try to pull the wool over her [rheumatology nurse’s] eyes but she watches me flinch, so she knows what’s going on. You can’t hide anything from her. … she just tells me straight.’

Effective relationships were characterized by rapport and trust. This was especially important for participants who had previously experienced healthcare interactions lacking these qualities. Examples include off-hand comments by a rheumatologist that were perceived as dismissive of the significance of an RA diagnosis, and a request for a patient to take pictures of her hands during a flare, which led her to feel her rheumatologist did not trust her report of symptoms.

Participants acknowledged that they also contributed to the effectiveness of clinical relationships. For example, a participant acknowledged that by not ‘[being] a bitch’ [#7.B] in their interactions, they received better care, particularly when escalating their care between appointments during a flare. Participants described their interactions with rheumatology nurses as positive, noting honesty and consistency as important elements of the relationship.

Theme 4: managing treatment challenges

This theme centered around the treatments accessed by participants and what challenges were faced in this process (Table 4). Cost and efficacy of treatments were central considerations for participants at all stages of their patient journey.

Table 4.

Theme 4: managing treatment challenges.

Disease phase	Quotation(s)
Early in disease course	#1.F ‘…I was on a massive dose [of prednisolone]. I don’t know if it was 25 or 50 milligrams for a while. That is massive. Then I had to slowly cut down. I think I was on 20 for quite a while or 25. Then when I was ready to come off, I had to cut down very slowly.’ #3.I ‘Then my GP—again, there was no rheumatologist on the scene. It was either Emergency Department or a GP and then he prescribed me some steroids—prednisolone—to knock out the pain. That helped. But it would have been better if I had some—when the ED said no, it’s nothing related to your heart. It might be RA flaring up.’ #3.J ‘[T]he GPs don’t have an answer, your [rheumatology] specialist can only tell you. When do you have your next appointment? It’s in three months—still three months of time. … The thing is GPs cannot take a decision of either increasing or decreasing the dose either.’ #4.A ‘ Because [the rheumatologist] has to really talk me in [to having the injection]… I mean, I’ve had hundreds of needles. I’d been a blood donor when I was younger. I still didn’t like the needle going in. I used to practically faint, but blood donated [sic], they need it.’
Being established on DMARD	#1.G ‘It was a long time, because they didn’t find Actemra for me for a while.’ … ‘Yeah. Oh, yeah. Even after that, more pain, because my rheumatoid, well, became so severely that no tablets worked for me. It took us nearly two years I think it was to find a drug that would help me with my rheumatoid.’
Disease maintenance phase/chronic disease	#6.C ‘They [rheumatology department/hospital] cancelled the appointment and postponed it to another day, and I don’t have a script to go and get my injections. So, I went and spoke to the GP and he managed to get that script written up. Because it’s a special script, they had to ring somewhere, someone and get the script done. So, the cancellations are a bit worrying for me.’ #8.C ‘Yeah, I’ll go to the doctor [GP] and he gives them [b DMARD injection] to me in my arm. I hate doing it myself.’ #1.H ‘I just pray that Actemra—I would really hate for the day—so maybe that’s a little worry I have when I do get sore. Now he’s a bit worried—he wants me to get my feet x-rayed because they’ve changed or whatever, because just walking on them hurts—that Actemra might not work for me one day. My body might get so used to it. Then I worry what would be the next drug, because once that stops working for me, I’m—I think I am a severe case.’ #4.B ‘It gets expensive, like the stuff I’ve got to inject three days before the operations are $120 a shot, I’ve got to do that twice a day. So, my chemist said go back to him, because I was going there today, and said go see him and get a script and get a 40 ml dose and a 60 ml dose, that way it’s covered by the PBS. I don’t even know why they didn’t do that, you’d think they would have, but people don’t seem to think out of the box.’

In the immediate post-diagnosis period, participants were reliant on a rheumatologist for guidance and adjustment of medications. Difficulty in accessing timely rheumatology appointments could mean significant delays to dose adjustments or commencement of additional medications in participants with persistent disease activity. Some participants sought ‘stop-gap’ input from their GP and received analgesics or prednisolone. One participant felt helpless in this period (Table 4, participant 3).

Community pharmacists provided support and advice, particularly around minimizing the economic burden of treatment. One pharmacist coached a participant on how to make best use of their Pharmaceutical Benefits Scheme ‘safety net’ to reduce out-of-pocket expenditure on prescriptions, and another instructed a participant to request specific medication quantity/volumes from their rheumatologist to increase affordability.

While many participants were stable on long-term treatments, one participant had struggled with persistent disease activity, reporting ‘never being in remission’ [#3.G] and was simply hopeful of finding a treatment which would ‘keep [her] how [she is] today’ [#3.H]. This participant emphasized concern about prolonged intervals between review appointments after starting new medications and insufficient ‘monitoring’ for potential side effects between appointments. Another participant with good disease control expressed fear for the future and the potential need to adjust treatments again should her current b/tsDMARD stop working.

Theme 5: living with trauma

This theme centered around traumatic or highly stressful experiences that participants faced either during their RA journey or prior to RA diagnosis (Supplementary Table S5, available at Rheumatology Advances in Practice Online). Many participants described psychosocial distress immediately prior to their diagnosis. One described the likely onset of RA symptoms coinciding with losing their family home in distressing circumstances and experiencing a workplace injury. Participants also linked events more temporally distant from the onset of RA to their narratives. Experiences included childhood sexual assault, experiencing racism, having limited contact with parents, the death of parents or children in traumatic and/or unexpected circumstances (e.g. death by suicide), cancer diagnoses, and adverse healthcare experiences.

One participant described her husband’s move into a residential aged care home for advanced dementia as a profoundly distressing and negative interaction with the wider healthcare system. Notably, this experience strengthened the participant’s HL, enabling her to be more effective in advocating for her own healthcare.

Medical trauma was described by participants with RA, including one participant reporting multiple stressful experiences, including requiring ICU admission due to iatrogenic medication error. Workplace injuries had variable impact, including being mistaken for or masking RA symptoms, and contributing to psychological and financial distress, particularly for those navigating workers’ compensation systems.

One participant described financial abuse by a former partner, coinciding with a period of active RA, limiting their capacity to address the abuse at the time.

Theme 6: adapting to chronic illness

This theme centered around participants’ responses to their chronic illness, including development and activation of self-management strategies and adjustment of expectations for the future (Table 5). Some participants emphasized the central role of the ‘health system’ in managing their health concerns, while others focused on self-management. One participant described apathy about the potential benefit that future medical reviews would have, referencing the ‘workload’ involved in raising new health concerns which would lead to a cascade of tasks (investigations, follow-up appointments, specialist referrals, etc.) This resulted in reluctance to raise new issues and an acceptance that some problems would not be addressed. Other participants described a similar fear of uncovering new diagnoses if new symptoms were raised with their clinician. In contrast, another participant sought additional care, requesting shorter intervals between rheumatologist appointments and expected more communication between her rheumatologists and her GP.

Table 5.

Theme 6: adapting to chronic illness.

Topic	Quotation(s)
Self-management skills	#6.D ‘I was putting up with the pain… Interviewer #1: Just putting up with the pain? Participant: …because can’t go to the doctors. They won’t give you any painkillers. Can’t go to the pharmacy and get Panadol every day because it’s not going to do any good for you. So, just managing it. Sometimes I used to put my hands in the hot water and just leave it in the hot water for a while just to get the relief.’ #5.D ‘I book every month because you only get three weeks of my sleeping tablet, but if you don’t book every month, you wait one to two months to get in. It’s just that much of a shortage of doctors, it’s ridiculous.’ #1.I ‘I’m going to have to go have x-rays and I’m going to have to go back to him. Then I’m probably going to have to go see the specialist. Then I’m going to have to do—because I’ve been through so much, I just get sick of going the doctor’s … I just can’t be bothered. You just go through so much and you just think, oh, I just can’t be bothered…’
Changes in one’s self identity and future expectations (including of the name of the disease)	#2.G ‘[T]his is a region that through my whole life has always been somewhere … I’ve felt safe and I’ve enjoyed … So it’s a mental health exercise for me living here, it’s critical to my mental health. If I was living in a four wall flat in Adelaide, I would just not cope at all, right. So having that mental health release makes it easier to deal with the physical aspects … so for me if I’m living on the riverbank, it makes it easier for me to deal with my arthritis.’
Perceptions of the disease name (RA)	#1.J ‘I really hate that rheumatoid is called rheumatoid arthritis. I hate that with a passion, because as soon as you say the word arthritis, people just think, oh, you’ve got some joint pain. They don’t realise it’s a white blood cell disease. The word arthritis shouldn’t even be in that category’ #2.H ‘I say to someone, oh I’ve got rheumatoid arthritis and they’re oh, you’ve got aches and pains in your bones. No, that’s not what it is, but that’s all people understand of it … it’s just got a really bad name. Change the friggin’ name, right, so that people understand it’s an immune disorder and not aches and pains in your bones because you’re getting old … because that’s all people think. You use the word arthritis …, everyone’s head goes, oh yeah, my grandmother had that. [Laughs]. No, she didn’t, that’s not even—other than the fact that it’s affecting the bones, that’s the only similarity. Nobody understands the word rheumatoid; everybody thinks they understand the word arthritis…’ [#2 MB] #7.D ‘They don’t know what it [RA] is, a lot of people.’

Participants described an ability to adapt to the healthcare system to ensure their needs were met, reflecting improving functional HL over time. An example of a solution was a participant who had a standing monthly GP appointment, enabling them to see the same GP at each visit and ensuring that they did not run out of medication between visits. Another participant addressed concerns around discontinuity in GP care by meeting with the practice owner. Additional concerns related to the cost of appointments and physical disability prompted him to ask, ‘why do I have to go and see a GP just to get scripts?’ (#2.F).

The importance of self-care for mental health was acknowledged by several participants. One participant reported improved mental health after moving from a metropolitan to a regional area, despite the new challenges in accessing care this raised.

Discussion

This study has highlighted the specific challenges that PlwRA and socioeconomic disadvantage face in accessing RA care. It offers explanatory insights about how disadvantage can be associated with poorer health outcomes, as has been observed in previous quantitative studies [2]. We identified six themes which, through the methodological emphasis placed by PJM on story, highlight these challenges in a broadly chronological sequence (Fig. 1A.) These findings highlight challenges experienced by PlwRA and disadvantage—for example, having to ‘convince’ [#2.A] providers that potential symptoms of RA warrant investigation; navigating complex health systems; and maintaining effective relationships with healthcare staff—that can prime conversations about the micro-, meso-, and macro-level changes necessary to improve outcomes for disadvantaged PlwRA.

Figure 1.

The relationships between themes constructed, and how themes align with proposed revised CC model/CF. (A) Relationship between themes identified in reflexive TA. (B) Proposed joining of CC model and CF to highlight where themes identified in TA can be located within existing theory

To facilitate these conversations, we have critically engaged with our themes through the lens of an existing healthcare access framework, to enable transferability of our findings, but also, and perhaps more importantly, to encourage healthcare staff to consider acting upon them. We have therefore used Dixon-Woods’ original ‘CF’ [21] and a recent revision (CF) to suit chronic disease care [22] to further interpret the themes generated. Broadly, the CF outlines the elements of ‘candidacy’ claims (Identification, Navigation, Appearances, Adjudications, Acceptance or resistance of offers, Permeability of healthcare system, Local operating conditions, and Embodied self, highlighted below in boldtype), drawing attention to key moments which may be pivotal in enabling or limiting in access to healthcare. We also refer to Shippee’s ‘CC’ model [23], and propose situating the CF within the ‘access, utilization, self-care’ element of the CC model (Fig. 1B). In this model, patient complexity is defined as a ‘dynamic state in which the personal, social, and clinical aspects of the patient’s experience operate as complicating factors’ [23] in determining health care access and health outcomes. Prior work has referred to elements of candidacy within the CC [26]. By conceptually situating the CF within the CC, we aim to describe how disadvantage (and other social determinants of health) appears to manifest in the ‘functional’ [23] elements of complexity, and operate through the CF, to influence health outcomes.

To begin with, participants of this study experienced challenges in identifying themselves as requiring RA care at both diagnosis and during long-term follow-up (Theme 1). Prior Australian [27] and international studies [28] recognize that ‘patient delay’ can impact care for RA patients, and we found that for the participants with low SES in our study, alternative explanations (innocuous, or attributable to musculoskeletal injury/trauma or occupational factors) for early RA symptoms were readily accepted and contributed to such delays. Raising greater public awareness of early RA symptoms has been identified as a strategy to address initial delays in help seeking and reduce any apprehension about being considered as wasting a GP’s time [29].

As highlighted by Theme 2, navigating services was challenging for participants, particularly those with CALD backgrounds and those without prior lived experiences of illness to refer to. Some participants found rheumatology services were insufficiently permeable (referring to the ease of entry/use of services); however, other participants ‘[didn’t] take no for [an] answer’ [#7.A]. These latter participants were empowered in their interactions to assert candidacy in interactions to facilitate their care, perhaps drawing on skills developed in prior experiences of accessing healthcare. Noting these variations, health literacy in RA patients differs according to sociodemographic factors including age, education and migrant status [30]. Optimizing the organizational health literacy of health services, including using structured approaches such as the Ophelia process [31], may support individuals’ health service navigation and address these barriers.

Appearance at appointments describes both the physical act of presenting for care, but also in the work required to assert one’s need for care. Participants experienced the need to frequently ‘retell their story’ (Theme 3) as significant ‘work’ which influenced willingness to ‘appear’ in appointments. Local operating conditions could also play a role: low SES has been linked with individuals visiting GPs who usually have shorter appointment lengths [32], and policy changes have seen recent national trends to incentivize such shorter appointments [33, 34], which may inequitably penalize individuals with lower SES. Such individuals often have greater CC, as we observed (Theme 6), and may not be able to afford out-of-pocket ‘gap’ payments required by GPs who offer longer appointments (Theme 3). Participants sought consistent relationships with healthcare providers who they connected with and who understood their unique circumstances. Such consistency would enable greater trust and enable more nuanced, trauma-informed care practices [35], recognizing the significant impact of prior traumatic experiences described by participants (Theme 5). Ultimately, however, changes to funding models (e.g. the Australian Medicare Benefits Scheme) may be required to provide genuinely equitable healthcare access for individuals with low SES, which better incentivizes both provider consistency and availability in chronic disease care.

Unsuccessful candidacy claims contributed to participants’ perception of futility in pursuing ongoing care (Theme 6). Increasing ‘patient workload’ exceeding ‘patient capacity’ appeared to drive these recursively failed claims [22, 23]: participants felt that raising new problems would only add to ‘workload’ and were pessimistic about deriving significant benefit. Addressing CC through practicing ‘minimally disruptive medicine’ [36] aims to reduce ‘patient workload’ and would see focus shift away from a single (index) disease to position RA as part of a multimorbid presentation requiring holistic, person-centred care [37]. (Themes 3 and 6.) Proponents of this type of care suggest focusing on four principles: (i) establishing the weight of burden for individual patients, (ii) encouraging coordination in clinical practice (i.e. between healthcare workers), (iii) acknowledging comorbidity in clinical evidence guidelines and (iv) prioritizing care from the patient’s perspective [36].

Limitations

This critical engagement with the CF and CC to understand and synthesize our themes aimed to focus on potentially actionable findings of our work, and therefore risks de-emphasizing findings which are equally important, but less practically modifiable: for example, the participants who perceived adjudication in describing symptoms of potentially-flaring RA and felt dismissed; in the acceptance and resistance to offers of different treatments proposed; or in the impact on the embodied self that interactions with others in the community had, in particular the stigma perceived by PlwRA about the name of the disease. Nonetheless, these are highlighted in the results and remain important outputs of this study.

Our study recruited PlwRA with established diagnoses of RA, rather than early arthritis. Whilst this may limit participants’ recall of this period of disease, this strategy did enable examination of later disease phases, including how participants achieved elements of mastery in self-management, adapted to having a chronic disease, and became more assertive in healthcare interactions.

PlwRA and disadvantage who were not accessing specialist care, and those with undiagnosed RA, could not be included in this work for practical reasons. Future work could include recruitment at the primary care level to try to sample this important group of individuals.

Our PJM ‘RA journey’ mapping tool (Supplementary Fig. S1, available at Rheumatology Advances in Practice Online) was co-designed with consumer input to facilitate data collection focusing on participants’ personal backgrounds and the details of healthcare interactions. This tool does not consider less traditional pathways into rheumatology care, however (e.g. referral from emergency department presentations). Nonetheless, using open-ended questioning and allowing participants to ‘lead’ interviews did identify the single participant who accessed rheumatology care via an alternative pathway.

Strengths and future directions

Our study stems from our quantitative observation of poor outcomes for this group in our care and a need to more deeply understand this disparity to determine possible solutions. It also responds to broader specific calls for qualitative studies to address this research gap [2]. To our knowledge, it represents the first instance of PJM being used to study the impact of disadvantage on individuals with rheumatic disease, and develops the methodology of PJM [11, 38]. We purposefully sampled for participants who would contribute a wide range of experiences to our study. Social disadvantage was present prior to the onset of RA, and our results contribute to the ‘social causation’ perspective, therefore [39]. Use of reflexive TA enabled both a deductive and inductive analysis and builds on prior methods of reporting PJM findings. A person with a lived experience of RA participated in all stages of this study, including conception, data collection and analysis. An unexpected outcome of the study was that several participants described finding participation cathartic, particularly those who drew links between traumatic experiences and health outcomes:

…the fact that I can vent my frustration and have someone hear… my story… wow, that’s a huge benefit [#2]

PJM involves deep listening and sense-making to better understand health and health interactions, with similarities to the trauma-focused lens proposed as potentially benefitting PlwRA and prior trauma in future clinical consultations [35].

PlwRA and disadvantage confront unique challenges in accessing effective RA care. Through PJM, this study has identified six themes, reflecting waypoints where the impact of SES appears to be most relevant. Interpreting these themes through the combination of CF and CC highlights how SES may practically impact PlwRA’s health outcomes, highlighting aspects of healthcare interactions that could be the focus of future interventions to improve care experiences. Re-focusing care for PlwRA and low SES to prioritize the ‘patient perspective’ and improving the permeability of clinical services appear to be important first steps in beginning to address these challenges.

Supplementary data

Supplementary data are available at Rheumatology Advances in Practice Online.

Data availability

The data underlying this article cannot be shared publicly to protect the privacy of individuals that participated in the study.

Funding

OR—Australian Research Training Place, Arthritis SA Post Graduate Research Scholarship.

Disclosure statement: The authors have declared no conflicts of interest.

Patient and public involvement: We aimed to involve a person with lived experience of RA (PwlRA) at all stages of the research process. Co-author AB was involved in all stages of the study, including manuscript review, and participated as a person with lived experience. They helped inform the design of Supplementary Fig. S1, available at Rheumatology Advances in Practice Online, a typical ‘patient journey’ which was subsequently also informally reviewed by RA clinic patients.

Given the nature of our study and use of reflexive TA, our process (of data collection and analysis) was continuously improved by the involvement of individuals with lived experience of RA and socioeconomic disadvantage. From a social constructivist perspective, PPI is essential to allow this work to proceed, as the issues explored are not inherently measurable or visible, but rather the process of PJM, and involvement of a PwlRA in our study at the level of co-author, was a significant strength of the study.