Maintaining good mental health in people with inflammatory arthritis: a qualitative study of patients’ perspectives

ABSTRACT

Purpose

It is well-documented that people with inflammatory arthritis (IA) exhibit a high prevalence of symptoms related to anxiety and depression. Less is known about what contributes to good mental health in people with IA. Therefore, this study aims to explore how some patients maintain good mental health despite living with IA.

Methods

Explorative qualitative interview study (one focus group, 12 individual interviews, n = 18) utilizing purposeful sampling. All interviews were audiotaped, transcribed, and managed using NVivo14 and employed a reflexive thematical analysis approach.

Results

We identified four main themes: 1) Assisted by a positive outlook on life—how participants’ inherent positivity helped them cope with arthritis; 2) Moving towards acceptance of life with arthritis—how participants embraced the reality of living with IA; 3) Counteracting letting arthritis dictate one’s life how the participants structured their lives in terms of physical activity and social connections; and 4) Taking responsibility for the trajectory—how the participants were mindful of their bodies and took the initiative to explore new treatments.

Conclusion

People living with IA maintain good mental health by engaging in structured physical activity, fostering social connections, and cultivating a positive outlook on life. These insights can inform the development of future treatment and support strategies.

Introduction

Inflammatory arthritis (IA) is a cluster of debilitating autoimmune disorders encompassing a range of conditions including rheumatoid arthritis (RA), ankylosing spondylitis (SpA), and psoriatic arthritis (PsA), with a prevalence of 1–2% in the general population and a lifetime risk of at least 1 in 20 (Chatzidionysiou et al., 2018). Patients living with IA often face a complex set of challenges due to persistent, debilitating pain and chronic fatigue, in addition to the demands of continuous medical appointments and necessary lifestyle adaptations, all crucial to managing a chronic illness (Gatchel, 2004; Kvien et al., 2019). IA therefore presents a complex challenge for both patients and the healthcare system. While the physical manifestations of IA are well documented and widely understood, there is a growing recognition of the profound impact of IA on mental health and overall well-being (Durmus et al., 2015). Within the realm of IA, depression emerges as the most frequently observed comorbidity, with prevalence rates ranging between 10% and 40% (Dickens et al., 2002; Dougados et al., 2014; Matcham et al., 2013; McDonough et al., 2014). Furthermore, a substantial subset of the arthritis population, comprising up to one-third of individuals, reports the presence of anxiety-related symptoms (Dougados et al., 2014; Durmus et al., 2015; McDonough et al., 2014). These mental health disorders are known to worsen disease severity and challenge self-management and quality of life (Barlow et al., 2002; Kılıç et al., 2023; Salaffi et al., 2009; Smith et al., 1990; Torta et al., 2014; Vestergaard et al., 2023). Notably, symptoms of anxiety and depression often remain a prevalent experience for individuals with IA, even when the disease is effectively controlled (Dobkin & Boire, 2018).

We recently described the mental health and inflammatory arthritis (MaIA) cohort study (Vestergaard et al., 2023) investigating the prevalence of anxiety and depression in a cohort of more than 12,000 patients living with IA. The findings revealed that 20–35% of patients were living with clinically relevant symptoms of anxiety or depression, leaving a group of 65–80% of patients in the cohort showing no signs of anxiety or depression. This suggests that some individuals living with IA are able to protect their mental health (Islam et al., 2023; Vestergaard et al., 2023).

It is unknown why some individuals with IA experience no or minimal symptoms of anxiety and depression. One potential explanatory factor could be specific resistance resources enabling individuals to effectively cope with a chronic condition and its associated implications (Aaron, 1987). Aron Antonovsky incorporated the concept of resistance resources in his theory of salutogenesis, i.e., theory of the origin of health as opposed to the origin of illness. Antonovsky’s theory also includes the concept of sense of coherence (SOC), which suggests the extent to which a person can comprehend and integrate, handle, and make sense of an experience or disease, which determines the individual’s potential to successfully cope with the situation or the disease (Aaron, 1987). These three components are interconnected and a strong sense of coherence will involve all three components being experienced with meaningfulness being the most significant. High SOC is found to be associated with perceived good health and is predictive of positive health outcomes (Aaron, 1987).

A concept closely related to Antonovsky’s notion of manageability is Bandura’s concept of self-efficacy (SE), defined as the individual’s belief in their capability to act in ways necessary to achieve specific goals (Bandura, 1994, 2010). Bandura’s theory of SE can contribute to our understanding of how some individuals living with IA are able to successfully manage their illness.

Given this context, this study aims to explore how some patients living with IA can maintain good mental health despite living with IA. Specifically, we wish to explore the strategies, beliefs, and resources employed by patients with IA with minimal symptoms of anxiety and depression to protect and promote their mental well-being.

Material and methods

Study design

This study adhered to the consolidated criteria for reporting qualitative research (COREQ) (Tong et al., 2007) and was designed as an explorative qualitative interview study. With a stance referred to as “subtle realist,” the present study acknowledges that a researcher’s viewpoint is unavoidably shaped by their inability to completely detach from their social context and experiences. It embraces the researcher’s subjectivity, yet still maintains a belief in a phenomenon that exists independently of the researcher. This phenomenon can be understood through the research process (Braun & Clarke, 2023; Brooks et al., 2015).

Participants and recruitment

To ensure the selection of a sample rich in information and encompassing extreme cases (Lincoln & Guba, 1985), we employed a purposeful maximum variation sampling strategy (Crabtree, 2023). This approach included participants who, as per the hospital anxiety and depression scale (HADS) (Zigmond & Snaith, 1983), showed no signs of psychological distress, with a HADS score < 5 on both the anxiety and depression subscales. Participants were diagnosed with either RA, SpA, or PsA, encompassing both sexes and with various ages and geographical variations. Furthermore, participants were required to speak and understand Danish.

Participants were recruited from among individuals who had previously participated in the cross-sectional MaIA study (cohort of ˃ 12000 patients) investigating mental health among people ≥18 years of age living with IA in Denmark, having access to a digital post box (Figure 1) (Vestergaard et al., 2023).

Figure 1.

Flowchart of participants included in the quantitative and qualitative MaIA studies.

Eligible participants were contacted by telephone, asking for their willingness to participate in the study. All participants were interviewed once in either a focus group interview or an individual personal communication. For the focus group interview, 25 patients were contacted, of which 18 declined, for example because of busy schedules. Seven patients agreed to participate, though one participant was unable to attend on the scheduled day. Due to difficulties in recruiting participants for the planned five focus group interviews within the study’s timeframe, it was decided to conduct the remaining interviews as individual phone interviews. All the 12 patients contacted agreed to participate.

Data collection

The data collection covered one focus group interview (n = 6) and 12 semi-structured individual telephone interviews (n = 12). The interview guide was developed by JM and BAE in cooperation with two patient research partners and was based on previous research related to living with IA and the impact on mental health, incorporating elements from the SOC theory and generalized SE related to living with IA. The interview guide commenced with an opening question exploring the participants’ thoughts on the concept of mental health. Subsequently, it included statements rooted in SOC (e.g., “I have learned to live with arthritis as a condition of life”) and SE (e.g., “I never doubt my ability to live well with my arthritis”). The participants were informed that the various statements did not represent the interviewer’s views but served the purpose of supporting the interview. Open-ended supportive questions were incorporated to encourage detailed responses. The same interview guide was used for both focus group and individual interviews, with follow-up questions serving as supportive prompts to help the interviewer obtain comprehensive answers to the initial statements. Not all questions were employed in every interview, as participants often already had addressed relevant topics. However, all interviews covered the full range of topics outlined in the interview guide. For an overview of the construction of the interview guide, see Figure 2. For full interview guide, see Supplementary Table A.

Figure 2.

Interview guide with examples of questions and statements rooted in sense of coherence and self-efficacy.

The interviews were conducted between February and May 2023. The focus group interview was carried out by BAE and AN, both female registered nurses with experience in conducting interviews. It was held in a meeting room at a hospital in Copenhagen and lasted for 94 minutes. The individual interviews were conducted by telephone by AN and lasted for an average of 22 minutes (range 15–32). The interviews were conducted by telephoned based on participant preference, allowing for nationwide participation. There were no private or professional relations between the participants and researchers prior to the study.

The interviews were audiotaped, and notes were made on the immediate understanding of what was said following each interview.

Researcher positionality

SMA, the primary researcher conducting the analysis, is a female physiotherapist with a background in community mental health. This has formed her view on the data and has been a possible aid in the analysis process. Continuous self-reflection during the analysis was facilitated through an audit trail, discussions with BAE and JM, and interviews addressing pre-conceptions (Ho et al., 2017).

Analysis

The analysis adopted an epistemological perspective, utilizing an inductive approach and using reflexive thematical analysis as described by Braun and Clarke (Braun & Clarke, 2022a). The reflexive thematic analysis allowed for an in-depth interpretive and exploratory analysis, identifying, analysing, and reporting patterns within the data (Braun & Clarke, 2006, 2022b). The concepts of SOC and SE were used to focus and refine the study’s perspective but did not fully guide the analysis. This approach allowed us to avoid a restrictive framework and instead employ an inductive method that promotes a rich and nuanced interpretation of the data, as balancing theoretical focus with an open analytical approach allows for enriching the depth and complexity of the findings (Malterud, 2016). All interviews were transcribed verbatim by a secretary and subsequently managed using NVivo 14.

The analysis process adhered to Braun and Clarke’s six-stage approach to reflexive thematical analysis (Braun & Clarke, 2006). In alignment with this approach, the analysis was iterative rather than linear. Reflexivity at each coding step revealed a necessity to revisit earlier stages in the analysis process, involving a back-and-forth movement. This iterative process was crucial in constructing adequate codes and themes to encompass the data interpretations (Braun & Clarke, 2022a).

Since SMA was not part of the interviewing or transcription process, the first stage of the analysis, familiarization, was highly prioritized. In stage 2, the generation of codes began through an active inductive process, moving back and forth between interviews. Reflections on the data created a need for revisiting the familiarization stage (stage 1). Having the research question in mind, codes were developed, encompassing both semantic and latent levels, aiming to capture the analytically relevant aspects of the data, and they consisted of both in vivo and descriptive codes. In stage 3, the codes were organized into meaningful patterns, identifying seven tentative themes. This stage involved a deeper focus on raising the analysis to an interpretive level. In a constant reflection on the content of these themes, carried out in collaboration with BAE and JM, the process aimed to ensure a clear conceptual framework for each theme. The seven themes were condensed into four main themes and nine subthemes. Stage 4 involved refining the themes and working towards an interpretive coherent story for each theme, which was compared against the original data and codes. Stage 5 entailed defining and naming the themes and sub-themes as well as a detailed analysis summary for each theme, with stage 6 being producing the report, providing a concise and coherent account of the story of the data. While our analysis focused on a collective treatment of all data, we were mindful of whether any patterns in the analysis could be attributed to differences in the diagnoses of RA, PSA, or SPA, but no such differences were identified. Selected citations are presented to support the results. For an example of the coding process, see Table I.

Table I.

Example of the coding process for the theme “moving towards acceptance of life with arthritis”.

Citation	Code name	Subtheme	Theme
“At the beginning, I could experience that it was difficult to accept that I had to be ill. Like, I can’t, it’s impossible. So, finding a balance. It was a long period where I almost pretended it didn’t exist.” (FG 3)	Saying goodbye to your old life	Embracing a different life than imagined	Moving towards acceptance of life with arthritis
“It sometimes causes a lot of tingling in my right leg, and I could do without that. There’s no doubt about that. But I also know that’s how it is, and I’ve learned to accept it and live with it. As I said, I don’t see it as something overshadowing, because it’s just part of me.” (ID 12)	Arthritis is always present, but not overshadowing	Making arthritis a companion, not an adversary

Ethical considerations

This study was approved by the Danish Data Protection Agency (p-2021-590). Due to the qualitative nature of the study, according to Danish law, no formal ethics committee approval was required (F-23047964).

All participants had previously consented to further participation in research during the cross-sectional MaIA study. Participants were informed of the purpose of this study, both verbally and in writing. Prior to the interviews, informed consent, both written and verbal, was obtained from all participants. The participants were informed that their data would be treated with anonymity and confidentiality and that they were free to withdraw at any time without consequences for present or future treatment. The principles of the Declaration of Helsinki were followed.

Patient research partners

In line with the recommendations of the European Alliance of Associations for Rheumatology (EULAR) (de Wit et al., 2011), this qualitative study involved two patient research partners (PRP). The engagement of the PRPs adhered to the GRIPP2 short-form guidelines (Staniszewska et al., 2017). The aim of involving PRPs was to ensure the continuous integration of the patient perspective throughout the study. The PRPs engaged in this study were two patients diagnosed with rheumatoid arthritis (RA). In terms of method, the PRPs actively contributed to the study by participating in the design process and making final decisions regarding the interview guides. Additionally, they provided valuable feedback on the results, the discussion section, and the conclusion of the study. The PRPs’ firsthand experience as individuals diagnosed with RA significantly influenced the shaping of this study, ensuring that the study remained grounded in the authentic experiences and perspectives of individuals living with arthritis.

Results

From the data, SMA, BAE, and JM developed four themes, which are presented below and supported by selected quotations from the transcripts. For an overview of themes, sub-themes, and associated codes, see Table II.

Table II.

Overview of themes, sub-themes, and codes.

Theme	Sub-theme	Codes
Assisted by a positive outlook on life	An innate competence of positivity	• My upbringing has given me skills that I use in life with arthritis • Despite setbacks • Whether the glass is half full • Welcoming challenges • This too shall pass
	A positive mindset helps shape a new narrative of living with arthritis	• I am well; it could be so much worse • Distinguishing other illnesses and challenges from arthritis
Moving towards acceptance of life with arthritis	Embracing a different life than imagined	• The necessity of prioritizing • Saying goodbye to my old life • Adapting to life with arthritis • A process of trial and error • It’s a learning process • The importance of financial security • Finding peace in the spiritual
	Making arthritis a companion, not an adversary	• Being aware of your situation • It’s there, but it doesn’t dominate • There should be room for all emotions in life with arthritis
Counteracting letting arthritis dictate one’s life	Staying active is crucial	• Creating structure as an opponent for resignation • Physical activity can keep the symptoms at bay • Feeling normal through physical activity • Activity as a distraction from symptoms
	The empowering role of social bonds	• The importance of relationships • Social interaction as a value • Being something for others
	The power of appreciating the smaller things in life	• Appreciating the small things in life and everyday moments • You have to be present
Taking responsibility for the trajectory	Attending to the voice of your body	• Focusing on living a healthy life • Being able to feel your own body • Encountering the healthcare system
	How the inner drive helps explore alternative treatment paths	• Believing that you can self-medicate the pain • Seeking alternative treatments • Encountering the healthcare system

Participants

A total of 18 participants were included in the study. Demographic data on the participants were available through the cross-sectional MaIA study (Vestergaard et al., 2023), from which the participants of the present study were sampled (see Table III).

Table III.

Characteristics of the study participants, n = 18.

Demographics
Age, years, median (IQR1)	55.4 (27.32)
Sex, females n (%)	7 (39)
Cohabitation status, living alone, n (%)	15 (83)
Labor market attachment, n (%)
Unemployed (Incapacitated for work)/retired	10 (56)
Employed	8 (44)
Household income, n (%)
Less than 499.999 DKK/Do not wish to disclose	10 (56)
500.000 DKK or more	8 (44)
Educational level, ISCED2, n (%)
Basic/Short	11 (61)
Long	7 (39)
Disease-related information
Diagnoses, n (%)
RA3	6 (33)
SpA4	6 (33)
PsA5	6 (33)
DAS-28-CRP6 (n = 6), median (IQR)	1.4 (2.21)
DAPSA287, (n = 6), median (IQR)	6.63 (6.64)
ASDAS8, (n = 6), median (IQR)	1.47 (1.64)
Disease duration in years, median (IQR)	10.5 (10)
Medical treatment, n (%)
bDMARD9	8 (44)
csDMARD10	10 (56)
Utilization of anti-depressants, n (%)
Never	17 (94)
Utilization of anti-anxiolytic, n (%)
Never	17 (94)
General self-efficacy, ASES11 (n = 18), median (IQR)	86.2 (15)
Therapy after diagnosis (counselling, including psychologist), n (%)
Never	15 (83)
Alternative treatment, yes, n (%)	9 (50)
Quality of life, EQ-5D12 (n = 18), median (IQR)	0.92 (0.12)
Physical function, MD-HAQ13 (n = 18), median (IQR)	0.2 (0.3)
Pain, VAS14 (n = 18), median (IQR)	20 (36)
Fatigue, VAS (n = 18), median (IQR)	19.5 (41)
Anxiety, HADS-A15 (n = 18), median (IQR)	2.5 (1)
Depression, HADS-D16 (n = 18), median (IQR)	1 (1)
Lifestyle
Physical activity behaviour, n (%)
Low physical activity (˂150 minutes weekly)	11 (61)
High physical activity (≥150 minutes weekly)	7 (39)

Abbreviations: ¹Interquartile Range, ²International Standard of Classification of Education, ³Rheumatoid arthritis, ⁴Ankylosing spondylitis, ⁵Psoriatic arthritis, ⁶Disease Activity Score for rheumatoid arthritis, ⁷Disease Activity in Psoriatic Arthritis, ⁸Ankylosing Spondylitis Disease Activity Score, ⁹Biologic Disease Modifying Anti Rheumatic Drug, ¹⁰Conventional Synthetic Disease Modifying Anti Rheumatic Drug, ¹¹Arthritis Self-Efficacy Scale (10-100), ¹²EuroQOL five-dimensional questionnaire (0–1), ¹³Multidimensional Health Assessment Questionnaire (0–3), ¹⁴Visual Analogue Scale (0–100), ¹⁵Hospital Anxiety and Depression Scale—anxiety subscale (0–21), ¹⁶Hospital Anxiety and Depression Scale—depression subscale (0–21)

Assisted by a positive outlook on life

Participants possessed an inherent capacity to view life through a positive lens, a perspective that proved beneficial in their journey with arthritis.

An innate competence of positivity

Participants articulated a prevailing sense of possessing a positive mindset, a cognitive disposition that propelled them to confront life’s challenges with unwavering optimism and determination. They attributed this resilient outlook, in part, to the influences of their upbringing and the examples set by their parents in handling the complexities of life and its inherent challenges.

I think we’re back to the survival gene. I’ve always had that attitude ever since I was diagnosed with my illness, that I’ll find a way. It may not have been the way I had planned from the beginning, but I’ll find a way. (Participant 6, individual interview)

The positive approach was further evident in how participants expressed their having an inherent belief that challenges would resolve themselves in the end. This belief often stemmed from previous experiences with severe illnesses, making participants approach challenges with a fearless demeanour. Additionally, some participants described how they were motivated by challenges, as these not only kept them active and engaged but also served as effective distractions from the symptoms of arthritis.

I don’t let anything hold me back; on the contrary, I prefer to embrace challenges. Today, I went to the library because they wanted me to organize a chess tournament. And I said, let’s give it a try. So it’ll be exciting, and I appreciate that. (Participant 7, individual interview)

A positive mindset helps shape a new narrative of living with arthritis

Participants described a dynamic change in their approach to arthritis over time, revealing a shift in their perspectives. In the early stages of their illness, some participants recounted a tendency to centre their focus on the challenges posed by arthritis. However, they noted a gradual shift in focus, which they attributed to their overarching positive outlook on life. This shift redirected their attention towards what they could still accomplish and what added value to their lives.

Many of the minor problems I see others experiencing, well, I just think to myself, “Oh, come on.” And then I look at many other things in a more positive light. So I really believe that helps. (Participant 8, individual interview)

The echoes of past encounters with other illnesses further shaped the participants’ stated positive perspective, instilling a proactive orientation towards the future rather than dwelling on potential negative outcomes. Drawing on past experiences, such as overcoming cancer or enduring accidents, participants contextualized life with arthritis, categorizing it as comparatively less severe. What was once perceived as burdensome and a potential contributor to diminished mental well-being assumed a diminished significance, framed as a trivial matter within the broader context of their experiences.

I’ve always kind of viewed it like, “What kind of illness is this? Is it life-threatening? No, probably not.” Well, I suppose I could have gotten something worse. (Participant 5, individual interview)

Moving toward acceptance of life with arthritis

Living with arthritis profoundly impacted the participants’ lives, requiring them to bid farewell to pre-illness expectations. Over time, they developed effective strategies for managing symptoms, which led to increased acceptance and resilience. Acknowledging arthritis as a source of strength contributed to a balanced life, emphasizing a harmonious coexistence with the condition.

Embracing a different life than imagined

Participants expressed that living with arthritis was not merely a medical condition but rather an integral facet of their being. Embracing this reality demanded acceptance of the multifaceted challenges it presented. For many, this acceptance process entailed saying goodbye to the pre-illness version of their lives and the expectations they had for their future. This farewell could elicit an emotional response, entwined with a sense of grief and a feeling of loss of control. Participants described how the onset of the illness, particularly during the early stages, was filled with uncertainty and prompted a profound re-evaluation of their self-image and identity, and an intensification of anxieties about an uncertain future.

It’s the process of learning to live with it. Not to resist or deny it. You could say I still get hit by grief over having gotten it somehow. And a grief over what I can’t do. It challenges one’s self-image or one’s narrative about oneself, who one is, what one should or what one can. (Participant 2, focus group)

The participants described a transformative journey towards accepting their chronic diagnosis, emphasizing the necessity of undergoing a learning process that enhanced their self-awareness and clarified their life priorities. Arthritis sparked this process, which ultimately became an appreciated journey for the participants, one that may not be fully grasped by those who have not experienced life with a chronic illness.

But I have definitely become much wiser about myself and what I want to prioritize, and what matters to me. I can see, compared to many of those closest to me, I’ve become a much better person. (Participant 3, focus group)

Some participants underscored the pivotal role of financial stability in crafting a positive life experience with arthritis. The absence of financial worries gave some participants the possibility to access assistance for practical tasks that arthritis renders challenging. This financial security not only facilitated the procurement of aids and treatments but also aligned with the participants’ expectations, reinforcing the notion that life can, to some extent, fulfil their envisioned possibilities. For some participants, arthritis imposed limitations on their ability to actively engage in practical tasks for their family and friends. However, the capacity to provide financial support offered an alternative avenue for meaningful contribution, despite physical constraints.

It provides a sense of peace knowing that I don’t have to figure out how to pay the rent or get my car fixed. I’ve been helping my daughter financially every month while she’s been studying. So, I have those options, and in a way, it gives me a surplus and a sense of security in everyday life. (Participant 1, individual interview)

Making arthritis a companion, not an adversary

The participants explained how, over time, the experiences of living with arthritis and its symptoms enabled them to develop effective strategies for symptom management. These strategies included structuring sleep patterns and engaging in physical activity, which helped in accepting their situation and averting a potential decline. Participants openly acknowledged the inherent challenges of this process, allowing moments of frustration to coexist with their adaptive strategies. Through gaining a comprehensive understanding of arthritis and a renewed awareness of their life priorities, participants underwent a transformative journey that enabled a reshaping of arthritis from a perceived adversary to an integrated companion within their identity.

When life is difficult, I want to be allowed to fall off that horse. I want to be allowed to feel like the world is cruel, and everyone is annoying, and I cry, and everything sucks. Then, give myself those two days and do it again. (Participant 10, individual interview)

Participants expressed how acknowledging that arthritis occasionally takes the lead became a source of strength and contributed to their resilience and feeling of balance in life with arthritis. By fostering a symbiotic relationship with arthritis and cultivating management mechanisms, participants crafted a life they perceived as a harmonious coexistence with the condition. This delicate balance was further demonstrated in the participants’ ability to relegate symptoms to the background, even when they persisted.

When I get an ultrasound done, the doctor always says, “But you must be in pain,” and I am, but I don’t bother with it, because I know what it is. (Participant 6, focus group)

Counteracting letting arthritis dictate one’s life

Participants described their determination not to allow arthritis to dictate the trajectory of their lives. They aspired to take control and shape their destinies. This overarching theme entails the strategies and tools they employed to assert autonomy, ensuring that arthritis does not assume dominance.

Staying active is crucial

Notably, participants had integrated a structured routine of activities into their daily lives, using it as a proactive strategy and anchor to prevent succumbing to resignation. This proactive approach involved the establishment of regular personal commitments, such as daily bike rides, which not only effectively mitigate symptoms but also protect against the dominance of illness and its negative consequences. By integrating such routines, participants recounted feeling empowered, fostering a sense of control over their lives, and countering the potential influence of arthritis on their lives.

I love to go for a run. And preferably a couple of times a week. Because it just provides a space. If I can’t go out and run, I’ll take a walk. Because it just does something mentally. Getting out, getting some fresh air, and clearing the mind. (Participant 12, individual interview)

Maintaining a physically active lifestyle was demonstrated as an essential theme in participants’ narratives. The significance of staying physically active went beyond mere symptom management; it became a cornerstone for preserving bodily mobility and was integrated into the structured routines of everyday life. Additionally, sustained engagement in physical activities cultivated a sense of “normalcy” within the context of chronic illness, concurrently serving as a powerful distraction from the challenges posed by their condition.

In the beginning, I found that I had this break from the pain. It was absolutely fantastic. I needed more of this, where I felt normal again. (Participant 3, focus group)

Moreover, participants highlighted the reciprocal relationship between personal well-being and the ability to contribute to others by staying active. The ability to care for grandchildren and orchestrate significant events carried intrinsic value for mental well-being. Thus, the dual nature of staying active—serving both as a personal benefit and a means of contributing to others—underscores its varied importance in the lives of individuals navigating arthritis.

The empowering role of social bonds

Participants talked about the vital role of spending quality time with family and friends in nurturing their mental well-being, recognizing the potent effect of social interaction as a means to divert attention from the burdens of arthritis symptoms. Actively seeking out social communities, they found that the companionship not only added intrinsic value to their lives but also served as a crucial deterrent against feelings of isolation.

I drive over to the football club and watch the young people play and talk to some guys. I’m quite aware that I shouldn’t end up as such a “loner,” you know, a weirdo, right? (Participant 1, individual interview)

The establishment of a robust network, encompassing individuals both with and without arthritis, became a valuable outlet for participants to express themselves and share their journeys when arthritis assumed a prominent presence in their lives. Many participants chose to be honest about their illness and involve family, friends, and colleagues in their arthritis journey, aiming to cultivate a deeper understanding of the impact it exerted on their daily lives.

I have never kept my illness a secret from anyone. It has always been something I’ve laid on the table from the beginning. And I think that has also saved me from having to deal with a lot mentally. (Participant 6, individual interview)

Beyond emotional support, friends and family actively contributed to practical aspects, alleviating the challenges posed by arthritis. This collaborative engagement underscored the integral role of social connections in participants’ management strategies, both in fostering emotional well-being and facilitating the practicalities of daily life affected by arthritis.

I’ve had a fantastic wife to support me. And that has been at least 50% of it. Because she has been just as good at finding solutions and seeing opportunities instead of limitations. (Participant 6, individual interview)

The power of appreciating the smaller things in life

Participants recounted how arthritis had helped them gain a deeper understanding of what held importance in their lives, opening their eyes to the beauty of life’s small moments and the value of living in the present. This transformative process involved a shift in focus, diverting attention from future uncertainties to the immediate experience of the here and now. Participants described finding liberation in relinquishing concerns about the upcoming week or distant future, choosing instead to immerse themselves fully in the present.

I want to say something that has made my life richer. It’s how I appreciate the little things. Like “damn, this shoulder actually works, wow, that’s lovely!” I mean, you wouldn’t appreciate that if you’ve never experienced pain. (Participant 5, focus group)

At times, participants actively challenged their arthritis, cognizant of the inevitable surge in symptoms that followed. This deliberate confrontation represented a calculated trade-off, a willingness to endure heightened discomfort in exchange for the freedom to live life on their terms, unburdened by the dictates of arthritis.

I’ve decided that this arthritis isn’t going to define me. I have this condition, and sometimes I do things, especially when I was younger, like if I was going out to a nightclub, I would go to that nightclub and dance all night, and then my body would hurt the next day. Because life had to be worth living too. (Participant 10, individual interview)

Taking responsibility for the trajectory

Participants articulated how arthritis served as a catalyst for a profound movement of self-awareness leading to a richer understanding of their bodies. Alongside a significant internal drive to take action, participants described exploring new types of treatments, demonstrating how they also took responsibility for their treatment.

Attending to the voice of your body

Navigating the demands imposed by arthritis on the body appeared to necessitate a nuanced ability to attune oneself to the signals it communicates. This skill, honed over time, empowered participants to discern and address the complex needs of a body entwined with arthritis. The process involved a profound attunement to the rhythms of the body, deciphering cues that signify the imperative for rest or the opportune moment for activity. According to participants, this heightened sensitivity often prompted transformative adjustments in lifestyle, spanning alterations in sleep patterns, dietary choices, and exercise routines.

Sleep and diet. I’ve simply rearranged it. Ensuring that I get enough sleep and such things. And that gives me the energy to manage everyday life. (Participant 6, focus group)

Mindfulness was frequently employed as a prevalent management mechanism, seamlessly woven into participants’ daily routines and skilfully employed by participants to elevate their focus on the signals emanating from the body. In this intentional practice, participants harnessed mindfulness not merely as a concentration aid but as a nuanced instrument capable of dual functionality. It served not only as a strategic tool for symptom management, effectively addressing manifestations such as pain, but also as a discerning method to attune to the needs articulated by the body, making the participants feel in control of their arthritis.

I need to listen to my body. And maybe I haven’t always been so good at that, but I’m trying. I’ve started doing mindfulness and practicing it every day, which is great. It helps me relax my body. (Participant 4, individual interview)

Enhanced self-awareness extended beyond the realm of daily routines to encompass a proactive approach to seeking medical attention. Participants, armed with a deepened understanding of their bodies, explained exhibiting an informed agency in recognizing signals that warrant professional intervention.

I have this approach where I listen to the signals of my body. If something is hurting, something I know shouldn’t be like that, I call my doctor. (Paritcipant 7, individual interview)

How the inner drive helps explore alternative treatment paths

Participants demonstrated a profound inner drive, serving as an empowering force that propels them to take control of their treatment trajectory. This tendency went beyond a passive state of waiting; instead, participants actively engaged in the process, taking on a proactive role. In this dynamic engagement, participants navigated uncharted territories, exploring avenues that might have otherwise remained inaccessible in the official healthcare system. This exploration necessitated not only a high degree of creativity but also an unwavering curiosity, compelling participants to uncover novel approaches that facilitated a fulfilling life amidst the challenges posed by arthritis.

I received magnetic therapy on this joint, and it was almost a year ago, and I haven’t had any pain in that joint since. Then I went to a doctor, and I told her that I had been to Croatia and had received that treatment, and the only thing she says is, “We don’t use that here”. (Participant 4, focus group)

This proactive endeavour extended beyond individual pursuits, encompassing a receptivity to the experiences and advice of others within the arthritis community. Participants skilfully absorbed and integrated valuable insights into their daily routines, crafting a personalized tapestry of treatment. Participants described experiences with new measures, assessed their effectiveness, and either discarded or integrated them into their lives accordingly.

I’ve always been the type who wants to know as much as possible. I Google, research, and read whatever I can. I gather information wherever I can. And then I try some of it out, and what doesn’t work just gets discarded. And what does work, I keep on doing, even if it sounds a bit like hocus pocus. (Participant 10, individual interview)

Discussion

The current study aimed to explore how some patients are able to maintain good mental health despite living with IA. Our research identified various strategies that people living with IA employed to maintain good mental health. To the best of our knowledge, this study is the first to focus on identifying the positive factors that contribute to good mental health in patients with IA. Previous studies have primarily focused on the negative aspects of living with this condition (Parenti et al., 2020; Park et al., 2020).

As we have access to various data on the participants of the study through the previous MaIA cohort study (Vestergaard et al., 2023), we were able to examine the results in light of these characteristics. Despite the available data indicating disease remission or low disease activity, as well as minimal symptoms such as pain or fatigue, it becomes evident that participants’ lives are not unaffected by IA. It raises the question of whether participants’ SOC, along with their employed management strategies, contribute to their lower experience of symptoms compared to individuals with lower levels of mental well-being. A recent survey including 5,000 individuals from the Danish general population over 15 years aimed to investigate prospective associations of good mental health at baseline with pain in the following year (Santini et al., 2023). The study found that higher levels of mental well-being levels were significantly associated with lower pain and less impairment due to pain after a year. In addition, both anxiety and depression were found to be associated with higher levels of disease activity and lower quality of life in patients with RA (Machin et al., 2020; Zhang et al., 2020).

When considering our results in the context of SOC, we can identify elements that encompass all three concepts: manageability, comprehensibility, and meaningfulness. Some results were also relevant for more than one concept, supporting Antonovsky’s statement that the concepts of SOC are interconnected.

When the participants of our study structured their lives to live well with IA, we believe it can be understood as a way to organize their internal and external environment to appear orderly and predictable, which may contribute to the sense of comprehensibility (Aaron, 1987). As the participants acquaint themselves with their bodies and interpret the signals they emit, they thereby might further enhance this sense of predictability. A similar result was found in a qualitative study exploring SOC in patients living with polio, which revealed how the participants learned to identify the patterns of their bodies to understand cause and effect, giving them a heightened sense of comprehensibility (Nolvi et al., 2022). In our study, the pervasive positivity exhibited by the participants assisted them in facing the challenges that arthritis presents, providing them with resources to cope effectively. The participants also described a determination not to allow IA to dictate the trajectory of their lives, which might further contribute to the sense of comprehensibility, with the participants striving to understand and make sense of their experiences in the context of their IA. These findings align with a qualitative meta-synthesis of 21 studies aiming to explore an understanding of how RA affects daily life (Parenti et al., 2020). The meta-synthesis found that confronting the illness with a fighting attitude serves as a proactive management strategy, enabling patients to cope with RA. Moreover, the study suggested that patients may even feel motivated by the challenges posed by arthritis, driving them to be active and focus on the positives in life, which contrasts with resignation as a management strategy. We believe that resignation can lead to a sense of helplessness, as our study shows that confronting IA with determination enhances participants’ sense of control and helps them manage their condition more effectively.

Participants in our study expressed experiencing meaningfulness through their choice to prioritize relationships as a value in their lives. This finding aligns with a study by Nolvi et al (Nolvi et al., 2022), where not only having valuable relationships was found to be meaningful but also the ability to do good and make a difference for others, as in our study. This might indicate how the ability to maintain good mental health may therefore be reserved for individuals with strong social relationships.

Additionally, participants in our study demonstrated a significant investment in their treatment, displaying an engagement that may stem, in part, from their perception that it represents a meaningful investment in their life with arthritis. This commitment is evident in their proactive approach to managing and accepting the condition, indicating an inherent motivation to enhance their overall well-being. Similarly, other studies have identified emotional regulation, such as acceptance and a sense of control, as factors that positively contribute to patients’ resilience and promote good mental health, along with a focus on self-care in patients with RA (Parenti et al., 2020).

It appears that through accepting their chronic disease and perceiving their ability to influence its ramifications, participants regain a sense of control, thereby possibly achieving a sense of manageability. The participants in our study expressed a belief in possessing the necessary tools to manage their chronic illness, as evidenced by their treatment approach, where they demonstrated a willingness to explore new and potentially alternative strategies. Our results suggest that they do not blindly adhere to medical directives but rather exhibit confidence in their capacities to manage their condition. Their desire to seize control and shape their destinies may reflect a sense of manageability, as they can actively engage in proactive management strategies to navigate the challenges posed by IA. Similar findings regarding the concept of manageability were also found by Nolvi et al (Nolvi et al., 2022), who identified similar management mechanisms in patients with polio, where participants found and tested novel paths in managing their illness.

The participants in our study place great emphasis on maintaining activity and sustaining social relationships through consistent structures and routines as a means of managing their illness. This emphasis may be attributed to a higher SOC as well as a belief in their ability to live a good life with IA and effectively manage the challenges that arise. A study investigating physical activity maintenance in people living with RA (Loeppenthin et al., 2014) also describes how physical activity is utilized as a means to keep the disease at bay and symptoms under control, contributing to the development of the mental resilience characteristic of the participants in this study. We find this approach particularly valuable, as physical activity is a well-established recommendation for managing IA symptoms. By emphasizing the importance of regular exercise, participants confirm the potential of physical activity as a means to control symptoms and increase well-being.

In essence, our findings underscore the interconnectedness of comprehensibility, manageability, and meaningfulness in the lived experiences of individuals navigating life with IA. When examining SOC as a comprehensive concept, previous studies have demonstrated that newly diagnosed patients with RA who have low levels of SOC tend to rely on management strategies predominantly characterized by resignation and isolation (Gåfvels et al., 2012). Furthermore, these patients often exhibit symptoms consistent with anxiety and depression, while simultaneously lacking a belief in their ability to manage their illness, indicative of a low level of SE. The participants in our study reported relatively high self-efficacy, as measured by ASES (86.17), which is also reflected in our results. They expressed a belief that they possessed the resources to cope with the challenges of the disease. Our findings revealed that participants demonstrated SE through various sources e.g., mastery experiences, where they overcame challenges related to arthritis; vicarious experiences, shaped by their past encounters with other illnesses; verbal persuasion from supportive social networks; and physiological and affective states managed through strategies like physical activity and mindfulness. For example, one participant noted that regular exercise provided both mental and physical benefits, enhancing their sense of control over their condition. However, according to Bandura, SE is inherently context- and activity-specific (Bandura, 1994, 2010). Given that our focus was on a more generalized sense of managing life with arthritis, the results may not fully capture the participants’ experiences of SE. Future research might benefit from targeting specific activities, tasks, or life domains to provide a more nuanced understanding of participants’ SE.

If we consider the strategies employed by participants in this study, including physical activity, maintenance of social relationships, and mindfulness, we cannot from this study alone establish a causal association between good mental health and these strategies. We do not know if the strategies are a source of good mental health or if good mental health is enabled by, for example, engagement in mindfulness and physical activity. In this regard, further research, possibly of a quantitative nature, to uncover the direction of this relationship is warranted.

Methodological considerations

There are several limitations and strengths to this study. Since the MaIA study (Vestergaard et al., 2023) did not measure the participants’ actual level of SOC, we lack definitive information about their SOC. Therefore, neither our study nor the MaIA study allows us to make any assertion regarding the participants’ actual level of SOC. However, based on our analysis, it can be inferred that participants articulate management strategies and resources aligned with the domains of SOC. It is important to note that the aim of our study was not to assess the participants’ level of SOC but rather to investigate management strategies and resources among them. Hence, this limitation does not detract from the study’s intended purpose. In addition, the interview guide was used as a tool for the generation of rich data reflecting the experiences of people living with IA and low symptoms of anxiety and depression, and not with the intention of exploring SOC or SE in this group as individual concepts. Incorporating theory into qualitative research could enhance interpretative focus, allowing for a deeper understanding of how individuals perceive and manage their experiences (Malterud, 2016). As our interview guide was rooted in the concept of SOC, we believe that our study provides valuable insights into how people living with IA maintain health despite chronic illness (of importance to increased focus on health promotion and support of self-management in clinical practice). In addition, as the analysis was not strictly deductive, it provided ample opportunity for descriptions that extend beyond the chosen theories.

A strength of this study is our broad representation of participants in terms of age, residence, sex, and inflammatory rheumatic diseases. This contributes to ensuring information power regarding our relatively broad study aim, which aims to encompass the perspectives of a spectrum of patients with IA (Malterud et al., 2016). Given that our study did not sample according to disease activity, and the disease activity scores ranged from low to moderate across the three included diagnoses, combined with the fact that the demographic data were collected approximately a year before the interviews, we cannot with certainty determine the specific level of disease activity that the results reflect. This limitation should be considered when interpreting the findings.

To ensure national representation, interviews were shifted to individual telephone interviews after the initial focus group interview due to practical reasons. We believe that this change has not compromised the quality of the interviews, as participants shared their experiences open-heartedly. This is supported by Novick (Novick, 2008), who argues that telephone interviews can make participants feel comfortable and thus more inclined to share sensitive information. Additionally, the interview guide drew partly from statements routed in SOC and SE, aiming to foster group discussion and reflection. However, as the interviews transitioned from focus groups to individual phone interviews, the interview guide remained unchanged, potentially impacting its effectiveness in individual interviews compared to focus groups. Nevertheless, the interviewer supplemented the statements with probing questions, thereby aiming to facilitate reflection among the participants in the individual interviews. The study used both focus group interview and individual telephone interviews, representing a triangulation of methods. While the interviewer followed the same guide for both interview types, the mode of data collection could affect the width and depth of responses. However, since the results of the different interview types affirm each other, this supports the study’s internal validity.

Another strength is our ability to present various demographic and socioeconomic data of the participants, allowing for a more thorough assessment of the results in light of these factors. This also enhances the potential of evaluating possible transferability to another context. We cannot exclude the possibility that participants’ abilities are dependent on sufficient socioeconomic resources and that the results may only be transferable to contexts where patients have equal state-funded access to healthcare services and other welfare benefits.

The demographic data presented in Table III were collected in connection with the cross-sectional MaIA study approximately a year before the interviews (Vestergaard et al., 2023). As such, we cannot with certainty determine the specific level of disease activity of participants at the time of the interview. This limitation should be considered when interpreting the findings.

Conclusion

The results of the current study suggest that participants with IA who are able to maintain good mental health employ management strategies aligned with SOC and SE. Some of these strategies could be incorporated into educational programmes and interventions targeted at this patient group, while others may be considered as personality traits employed in managing illness. This knowledge can be utilized to identify patients who may lack these traits, as this group of patients may require additional support in managing life with arthritis to maintain good mental health.

Biographies

Signe Marie Abild I am a physiotherapist and a master of science in health science. My research interests lie among other things in mental health and physical activity. I am particularly interested in how complementary treatment options can add value alongside or as an integrated part of traditional therapy or treatment.

Julie Midtgaard I am a licensed psychologist and professor at the Psychiatric Center Glostrup. I have been involved in health research since 2001. My specific focus has been on the development, interdisciplinary evaluation, and implementation of interventions aimed at changing and maintaining health behaviour. Special areas of interest include rehabilitation, health promotion, and patient-centred prevention. I am particularly concerned with the change and maintenance of physical activity behaviour, as well as exploring and supporting individuals’ experiences of their well-being.

Annika Nordkamp Mental health nurse, MSciH, and PhD student. In my work, I am interested in a holistic perspective on health, recognizing health as a comprehensive concept that includes both physical and mental aspects to achieve optimal health outcomes.

Annette de Thurah Nurse, MPH, PhD, professor of health services research, Department of Rheumatology, Aarhus University Hospital and Department of Clinical Medicine, Aarhus University. My research specifically involves new models of care, telehealth, and epidemiology within rheumatology.

Sofie Bech Vestergaard I am a registered nurse and a master of science in health science. My passion for reducing health disparities has driven me to explore various perspectives in this field. Currently, I am a PhD student at the Department of Rheumatology, focusing specifically on health literacy.

Bente Glintborg I am a physician and associate professor in rheumatology. I have an ongoing interest in treatment and outcomes in patients with inflammatory rheumatic diseases, and I have authored a range of epidemiologic studies within this field. I am currently chair of the Danish Nationwide DANBIO registry where patient-reported outcomes for >20 years have been monitored in routine care-treated patients.

Mette Aadahl Physiotherapist, MPH, and professor of rheumatology at the Center for Clinical Research and Prevention, Frederiksberg Hospital. My research involves the prevention of chronic disease through physical activity and health promotion in patients with various chronic diseases, through the integration of epidemiological studies and systems-based approaches in the development, conduct, and implementation of interventions to increase physical activity.

Pernille Fevejle Cromhout I am an RN with a MSc in health and a PhD. My research has been focused on mental health in patients with chronic diseases.

Lene Lau Patient research partner living with inflammatory arthritis. Bachelor’s degree in psychology and lecture speaker on life with arthritis, relationships, and intimacy.

Connie Yilmaz Patient research partner living with inflammatory arthritis, with a background as a social worker. In the last several years, Connie has worked as a leader in various organizations.

Bente Appel Esbensen Registered nurse and professor at COPECARE in the Center for Rheumatology and Spine Diseases. My primary research areas are clinical practice in rheumatology concerning self-management, and preferences for support, age and gender issues, lifestyle, physical activity, clinical prevention, ethnicity, next of kin, quality of life, and existential issues. In addition, I am occupied in health-related interventional and observational clinical studies in inflammatory arthritis as well as qualitative research methods and developing complex interventions.

Funding Statement

This study is embedded in the TASEMA programme led by BAE. This work was supported by the Novo Nordisk Research Foundation under [grant number NNF19OC0056658]; Lundbeck Foundation, the Capital Region of Denmark under [grant number A6855]; and the Danish Rheumatism Association under [grant number R190-A7032].

Disclosure statement

BG: Research grants (paid to the institution and not related to the present project)—Pfizer, AbbVie, Sandoz, BMS.

PFC is an employee of Novo Nordic A/S. The remaining authors declare no competing interests.

Availability of data and materials

The dataset includes potentially identifiable or sensitive data, which, if disclosed publicly, could jeopardize the privacy of the participants. Consequently, in compliance with regulations established by the Danish Data Protection Agency, the data are not accessible to the public. However, interested parties may obtain access to the data by making a reasonable request to the corresponding author.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2024.2424015