Participation in healthcare consultations: A qualitative study from the perspectives of persons diagnosed with hand osteoarthritis

Abstract Introduction Scarce health resources and differing views between persons with hand osteoarthritis (OA) and health professionals concerning care preferences contribute to sustaining a gap between actual needs and existing clinical guidelines for hand OA. The aim of this study is to explore the experiences of persons diagnosed with hand OA in their encounters with health services and how those experiences influence negotiations and decision‐making in hand OA care. Methods Data from 21 qualitative interviews with persons diagnosed with hand OA were collected, transcribed verbatim and analysed using reflexive thematic analysis. Results Three main themes were developed: symptoms are perceived as ordinary ageing in everyday life, consultations are shaped by trust in healthcare and the responsibilities of prioritisation and self‐care govern interactions. Conclusion Ideas of ageing, professional knowledge and self‐management dominate hand OA health encounters and contribute to shaping illness perceptions, preferences and opportunities to negotiate decisions in consultations. Patient or Public Contribution Two patient research partners with hand OA are members of the study project group. One of them is also a co‐author of this manuscript.


| INTRODUCTION
The global burden of osteoarthritis (OA) accelerates with an ageing population, 1 posing challenges for health services. 2 Hand OA services aim to care, not cure. Progress is limited in developing effective treatments. 3,4 While hand OA has recently gained increased attention, 5 interventions do not fully consider persons with hand ailment in their encounters with the health system. 6 Poor access to treatment, 5 low consultation rates, 7,8 delayed contact with health services 9,10 and symptoms perceived as inevitable with ageing 11 are reported. This contributes to hesitance in seeking health services attention 12,13 and beliefs that the condition does not justify treatment. 7,14 The health-seeking process is complex, 15 and people with hand symptoms report a lack of information 16,17 and dissatisfaction with consultations and treatments, 18,19 contributing to their experiences of having a condition that does not get the attention it deserves. 9 Differences between people with hand symptoms and health providers on OA care 16,20,21 underline the importance of enhancing the perspectives of people with hand ailment to reduce the gap between their perceived needs and existing guidelines for hand OA.
Current research is limited to experience with recommended treatments, where shared decision-making 22  We saw consultations between people with hand ailments and health professionals as encounters where negotiation takes place.
Erving Goffman 23 inspired our understanding of the concept of 'encounter' as a social organisation where certain rules exist. Thus, consultations encompass obligations and expectations, serving as a location for interaction. 23 By using the concept of encounter, we highlighted consultations as structured and governed by layers of rules, norms and societal values while also acknowledging that negotiations within encounters are less formal and point to adjustments made in consultations to comply with institutional demands. 24 We included power dimensions to our analysis through Steven Lukes' 25 work to enable situations of 'being liberated from certain power relations and of the reduction of power within a relation'. 26 ,p. 27 We argue that hand-OA discursive ideas influence participation. Lukes' emphasis on power dimensions is useful to our analysis as it allows us to think through how power is exercised within healthcare, where asymmetry and power in relations might be difficult to observe. This conceptualisation of power is generative for grasping how power relations play out, impact encounters and subsequently influence negotiations to reach decisions in healthcare.
Lukes' 25 three power dimensions are decision-making, agenda setting and ideological power. The decision-making power, overt and direct, aims to reach specific results in conflict situations. The agenda-setting power, indirectly exercised, portrays how decisions linked to the potential conflict are prohibited from being taken.
Ideological power, concealed and embedded in structures and institutions, rises beyond individual actors so that the exercise of power is taken for granted.
The decision-making process in healthcare has gradually shifted from one of the passive patients to one of the responsible patients, 27 with the aim of redistributing power. 28,29 These processes, framed within the democratisation of health services, contribute to new understandings of health encounters. 30 By linking actual negotiation processes in encounters with larger structural considerations of power, we ask how decisions are made in hand OA healthcare consultations.

| Context
The Norwegian state plays a central role in providing access to fundamental goods, including healthcare. 30 In Norway, due to poor access to relevant hand OA services in primary healthcare, persons with hand symptoms are referred for hospital consultations with rheumatologists and occupational therapists. The two hospitals from which participants in this study were recruited specialise in rheumatology and were chosen based on their similarities in providing services to persons with hand OA while also featuring different local processes. 31 The diagnosis is made based on patient history and clinical examination. 32 Symptoms are hand pain and stiffness, which affect one in two women and one in four men. 33 Recommended general treatment includes information on hand OA and exercises for the hands, whereas orthotics, pain medication and surgery are considered individually. 5

| Research team
This study is part of a three-phase project that aims to understand current hand OA pathways, including patient experiences and professional practices. A randomised controlled trial (RCT) was initiated in 2017 (400 participants), 34 followed by an ongoing qualitative study and a Delphi consensus process planned from 2023. The first author, H. J. M., is a PhD student and a physiotherapist with 20 years of clinical and managerial health and humanitarian experience. The co-authors include professors, an associate professor, clinicians and a patient research partner. We also consulted with an international advisory board of researchers with various professional backgrounds.

| Data collection
Through a qualitative research design, informed by a constructionist epistemology, 35 we collected data using qualitative interviews. An interview guide (Supporting Information: Appendix 1), piloted with two patient research partners, including content about initial contact with health services, encounters with health professionals, treatment and self-care strategies. Nineteen interviews took place in person, while two participants chose digital interviews. One participant had his spouse present upon request. Interviews lasted 55-90 min each and were audio-recorded. Data were stored on the secure platform services for sensitive data, in compliance with the Norwegian privacy regulation, including immediate encrypted audio files transfer post-interviews. Participant anonymity was safeguarded through separate participant information and data file storage.
Through research team discussions, information power was reached after 21 interviews. 36 The broad study aim and cross-case analysis required more participants, while H. J. M.'s experiences as a qualitative researcher with some theoretical knowledge and skills to establish a good dialogue called for fewer participants.

| Data analysis
We applied reflexive thematic analysis 37 to endorse the process of researcher subjectivity and the situated generation of knowledge to report patterns. 38  developed semantic and latent codes inductively from reading the data, alternating with personal experiences and academic literature with a focus on microlevel interactions. 41 After several rounds of research team discussions, including one session discussing two different interview transcripts in detail, we sorted main codes into potential themes before presenting preliminary results to the advisory board. Themes were thereafter reviewed and refined to ensure relevance to the coded extracts and that we had captured patterns of shared meaning across the data set. 42 In reviewing themes, we added power dimensions to our analysis in an effort to grasp the complex decision-making process where sociocultural factors were seen to influence perceptions and actions. This iterative process helped us to gain a deeper understanding of the themes and how they connect in telling an overall interpretive story (Table 1). 43

| RESULTS
We developed three main themes from codes as presented in Table 1 to capture how decisions are made in healthcare consultations

| Symptoms of ordinary ageing in everyday life
Hand pain and functional limitations were described by many participants as common, a product of ageing and nontreatable, contributing to limit contact with health services: 'There is nothing that can be done about it, and it is so common. And of course, when you age as well, then there is more of it' (Woman86). When linking it both to ageing and the notion that nothing can be done to address the challenges, she reduces the hand OA significance and accompanying needs. This might explain why most study participants also described symptom onset years before initiating contact with the healthcare system, keeping diffuse symptoms to themselves. Some participants frequently used the word discomfort rather than pain in interviews when they talked about their hand condition, further underplaying the severity. 'Well, it probably has something to do with age and the fact that I am more than 75 years old and have In addition, I know that they are professionals.

| Responsibilities of prioritisation and self-care govern interactions
Notwithstanding the trust, participants also described a social responsibility when comparing their own illness with others whom they perceived to need healthcare more: 'I think it is something inside me telling me that I should not annoy that doctor. Because he probably has many others who are more ill than I. In this way, few expectations exist for health system interventions.
This social responsibility to prevent social expenses on healthcare is seen as directing personal decision-making processes. By taking on individual responsibilities for self-care, participants at the same time attribute a lack of progress and result in managing the condition to their own lack of initiative.

| DISCUSSION
Our study aim was to explore the experiences of persons diagnosed with hand OA in their encounters with health services and how these experiences influence decision-making in hand OA care. The results show that people with hand ailments bring trust into encounters with health professionals for a condition they perceive to be age-related and ordinary. They also give accounts of responsibilities to prioritise and self-care in a process shaped by hand OA as a chronic condition, influencing the definition of needs, how those needs are responded to and by whom.

| Ideas of ageing taken for granted
In this study, participants viewed symptoms as part of ordinary ageing. Moreover, they downplayed severity, which strengthened the notion of not being entitled to healthcare when comparing their own situation with that of others. This aligns with other studies, 15,44 in which the perceived worthiness of the illness was judged through social comparison when considering whether to consult health services. The 'ordinary ageing' narrative generated in our analysis corroborates previous findings. 11,12,45 The meaning our participants attributed to symptoms is an ongoing and complex social process. It is influenced by how symptoms are perceived within a wider sociopolitical context where power over worldview, as Lukes 25  Although trust within healthcare is seen as contributing to health system functioning 59 and enhanced health outcomes, 60 we argue that trust also contributes to sustaining the agenda-setting power of health professionals when persons with hand ailments take expert knowledge for granted. Expert knowledge reinforces the power hierarchy when persons diagnosed with hand OA influence healthcare provisions less than the health professionals with whom they interact.

| Limited power to make decisions in encounters
Our study shows how participants describe managing hand OA on their own when few other options are made available to them. In this process, they also become accountable for the lack of improvements when the aim is to care for, not cure, hand OA. Support for selfmanagement is recognised as central in responding to chronic health needs. 61 Self-management in hand OA care aims to improve patient autonomy, 5 and shared responsibilities between health professionals and patients are reportedly facilitating self-management in rheumatology. 62

| Strengths and limitations
The present study addresses a knowledge gap by shedding light on multiple factors influencing consultation dynamics and opportunities for decision-making in hand OA care, which might be relevant given We recognise that the time between symptom onset and consultations, as well as experiences with other conditions and services, shaped what our participants found acceptable, emphasised and conveyed during interviews. This might be a limitation, but it might also strengthen potential applicability to chronic conditions beyond hand OA.

| CONCLUSION
Our study shows how symptoms are seen as ordinary and expected with age, which subsequently delays health-seeking and influences