‘Like a ticking time bomb’: A qualitative study exploring the illness experiences of adults with kidney stone disease

Written by Emma Ní Néill1, Helen L. Richards1, Derek Hennessey2, Dónal G. Fortune1

1Department of Psychology, University of Limerick, Limerick, Ireland Health Research Institute, University of Limerick, Limerick, Ireland

2Urology Department, Mercy University Hospital, Cork, Ireland

Emma Ní Néill

Derek Hennessey

Dónal G. Fortune

Kidney stone disease (KSD) is a urological condition characterized by the development of calcifications inside the collecting system of the kidney. Stones formed in the kidney can cause pain and infections locally but can move into the ureter and obstruct the kidney causing ureter colic (Parmar, 2004). Renal and ureteric colic are the specific pains associated with KSD and are considered one of the most severe physical pains a human can experience. KSD aetiology is multifactorial for the majority of patients, however, a subset of patients have a metabolic, congenital or genetic cause (Howles & Thakker, 2020; Parmar, 2004). Patients with KSD experience additional burdensome symptoms such as fever, nausea, haematuria and dysuria (Frassetto & Kohlstadt, 2011), which significantly impact patients' quality of life (Raja et al., 2020).

KSD can be a fatal condition and in these cases mortality is usually related to sepsis developing in an obstructed kidney due to a ureteric stone (Kum et al., 2016).

The current lifetime prevalence of KSD is 14%. This varies globally with research reporting estimates of 5%–9% in Europe, 7%–13% in America (Sorokin et al., 2017) and 1%–19.1% in Asia (Liu et al., 2018). Current rates indicate the prevalence of KSD has risen over the past four decades (Thongprayoon et al., 2020). Historically, KSD was thought to be twice as common in males than females and typically affecting those between 30 and 55 years of age (Parmar, 2004). However, these gender differences are now narrowing, with young females at a higher risk of developing KSD than previous generations (Gillams et al., 2021). Whilst the reasons for KSD causality are complex, the incidence and prevalence of KSD is regarded as an emerging public health concern with implications for the provision of health care resources (Hill et al., 2021). This is in part due to the fiscal cost of treating KSD which is estimated to exceed the combined cost of bladder and prostate cancer in the UK alone (Geraghty et al., 2020). Moreover, patients have a high likelihood of experiencing recurrent stone episodes with estimated recurrence rates of 35%–52% reported at 5–10 years following their first episode (Khan et al., 2016; Uribarri et al., 1989) illustrating the potentially chronic nature of this urological condition and the likely need for future medical intervention.

Whilst effective treatments exist, there are no permanent cures for KSD. Dietary and lifestyle modifications are the cornerstone of improving KSD prognosis by reducing the risk of recurrence (Boarin et al., 2018; Pearle et al., 2014) and, importantly, are evidenced as the most effective measures for preventing KSD onset. Although these preventative strategies may be perceived as relatively straightforward, adherence to increasing daily fluid intake is low amongst patients (Khambati et al., 2017; van Drongelen et al., 1998).

Patient perspectives are likely to be important in expanding our understanding of the engagement with prevention strategies within the context of illness experience of KSD. Whilst motivation to reduce recurrence is reported to be high (McCauley et al., 2012), perceptions of barriers to increased fluid intake include forgetting to drink and lack of thirst (Streeper et al., 2019). Interestingly, disease-related factors including multiple recurrent stones have not been associated with higher fluid intake (Tarplin et al., 2016). Gaining an understanding of processes that influence this behaviour may identify targets for intervention to reduce this behaviour–intention gap, potentially lessening the individual and health care cost of KSD.

An emerging body of research suggests that KSD is associated with psychological distress (Angell et al., 2012; Chung et al., 2012; Lien et al., 2015) due to stonerelated factors (Angell et al., 2012) including burdensome physical symptoms (Diniz et al., 2007; Kalaitzi et al., 2006), and urological treatment (Lien et al., 2015). KSD populations have a higher risk of experiencing depression within one year following diagnosis (Chung et al., 2012), increasing to 50% for anxiety and 26% for depression during ten years of follow-up compared with nonKSD populations (Lien et al., 2015). Recent studies have begun to examine the physical and psychosocial challenges of KSD from a qualitative perspective (Raja et al., 2020). These impacts tend to be characterized by frequent and painful urinary symptoms, gastrointestinal symptoms, sleep disturbances, work impacts (Ragab et al., 2020; Tran et al., 2018), impact on relationships (Raja et al., 2020) and treatmentrelated anxiety (Kelly & Kelly, 2019; Ragab et al., 2020). Whilst psychological distress experienced by patients may be explained in part by the multi-dimensional consequences of KSD, patients also report a fear of recurrence of KS (Nouri et al., 2021), anxiety about the future (Raja et al., 2020) and uncertainty of the condition (Ragab et al., 2020). Despite these findings, how patients make sense of their illness experience of KSD remains poorly understood.

The Common-Sense Model of Illness Self-Regulation (CSM-SR; Leventhal et al., 1980, 2016) is one of a number of frameworks that have attempted to formalize the idea that how people think and feel about their illness may impact health outcomes. Illness representations are dynamic processes, whereby people continuously use and integrate information from a variety of sources to formulate a dual cognitive and emotional representation to make sense of their illness and define targets for coping (Leventhal et al., 1998). Cognitive illness representations are key beliefs people hold about the cause, identity, timeline, curability/ controllability and consequences of their illness (Leventhal et al., 1980). Simultaneously, people create emotional representations of their conditions incorporating their affective responses such as worry or anger (Leventhal et al., 2016). These illness representations inform patients' subsequent coping strategies and other mitigation behaviours such as action plans in an attempt to manage their illness (Leventhal et al., 2016). Importantly, research suggests that illness representations are modifiable through intervention by targeting unhelpful illness beliefs (Chilcot & Moss-Morris, 2013; Jones et al., 2016; Vollmann et al., 2021), which may give rise to improved patient treatment adherence (Pereira et al., 2019). To date, no studies have explored the CSM-SR in individuals with KSD.

This study aimed to address this gap in understanding by using a CSM-SR informed lens to examine the illness experiences of adults living with and receiving treatment for KSD. Increasing our understanding of patients' experiences of KSD may help to identify barriers to engagement in self-management behaviours. Additionally, the acquisition of a theoretically informed understanding of individuals' illness representations may enable health care professionals (HCPs) to provide more tailored patient-centred care through understanding the breadth of illness representation experiences that could be amenable to psychologically informed intervention for patients.

METHOD Design

This qualitative study utilized the CSM-SR (Leventhal et al., 1980, 2016) to provide the theoretical framework for analysis and to inform the study's semi-structured interview schedule (see Supporting Information). A qualitative approach was chosen to enable a deeper exploration (Iphofen & Tolich, 2018) of illness experiences that could not be achieved through quantitative methods alone (Gelo et al., 2008). Individual interviews were selected as it was considered it would enable the researcher to explore personal illness experiences in broader detail (Guest et al., 2017). It was also considered that participants may be willing to share more personal experiences via this format than in a group setting. Ethical approval was received from the Clinical Research Ethics Committee of the Cork Teaching Hospitals (reference number: ECM4(b)120121).

Participants

Participants were recruited from an outpatient kidney stone service between September 2021 and December 2021. The diagnosis of kidney stone disease was made by a senior urological surgeon by history, clinical examination and confirmed by non-contrast computerized tomography of the kidney ureters and bladder. All patients in this study had experienced one or more episodes of renal or ureteric colic, recurrent urinary tract infection, urinary sepsis, emergency kidney surgery or deterioration in kidney function due to their kidney stones. Due to the severity of these symptoms/ complications, all patients were offered surgical intervention with the intention of complete stone clearance. Observation was not offered unless there were specific individual patient factors that would prevent surgery, for example, not fit for anaesthetic. Individuals were eligible to participate if they met the following criteria: (1) had a diagnosis of kidney stones; (2) had sufficient English to engage in the interview; and (3) were over 18 years of age. Forty-two consecutive individuals were invited to participate in this study. Of these, one individual did not consent at the time of recruitment; 7 individuals did not respond to telephone contact; and 1 individual withdrew consent. Thus, the final sample comprised of 33 individuals with KSD. Prior to recruitment a provisional lower and upper limit of participants was estimated (Braun & Clarke, 2019), based on the relatively broad study aims, and the crosscase approach to analysis as outlined for achieving ‘information power’, (i.e., whether the data held adequate information to generate novel understandings), in qualitative studies (Braun & Clarke, 2021; Malterud et al., 2016).

We arrived at a final sample of 33 participants through considerations of the quality of the dialogue, including richness of data, within interviews from ongoing analysis of transcripts (Braun & Clarke, 2019) and pragmatic considerations including a higher than expected number of individuals recruited at the final clinic.

Procedure

All participants provided written and verbal consent to partake in the study and for the interviews to be audio-recorded. All interviews were conducted by the first author (ENN), a Psychologist in Clinical Training with academic knowledge but no lived experience of KSD. There was no personal or professional relationship between the participants and the interviewer. Interviews were conducted via telephone (n = 29) or video call (n = 4) in line with national COVID-19 restrictions in place at the time of data collection (September 2021 to December 2021). Interviews were recorded on a Dictaphone with audio recording properties. Interviews took place within 1 week of the person with KSD being recruited. Interviews were transcribed verbatim and were cross-checked for accuracy and then deleted from the recording device.

Data analysis

Reflexive thematic analysis (Braun & Clarke, 2006, 2021) was chosen as the method for analysis as it allowed the researchers to identify patterns of meaning across the data set, whilst simultaneously drawing on theoretically informed interpretations of meaning from the CSM-SR (Leventhal et al., 1980, 2016). The fifteen-point checklist for thematic analysis (Braun & Clarke, 2013, 2021) was used to ensure rigour.

Analysis was conducted within a critical realist paradigm whereby participants' narratives provided the researcher with access to a mediated reflection of participant's reality (Braun & Clarke, 2021). Whilst we drew on a specific theoretical model, we also acknowledged that data could extend beyond domains of the chosen model (Fletcher, 2017) to generate new understanding.

Data analysis was conducted by the first author (ENN) by hand and followed the six-phase process of thematic analysis (Braun & Clarke, 2021; Clarke & Braun, 2013). First, familiarization with the data occurred through immersion in the data set and iterations of reading interviews. Coding of data was completed primarily at a semantic (explicit) level, but latent (implicit) meanings were also considered. Importantly, analysis was an iterative process, with the researcher moving backwards and forwards between stages as thinking changed (Braun & Clarke, 2021). ENN maintained a reflexive journal along with field notes to consider their own bias during analysis. Finally, categorized codes were reviewed and refined

into final semantic and latent themes (Braun & Clarke, 2021). In the second stage of the analysis, these themes were mapped onto the domains of the CSM-SR. ENN undertook the initial mapping, which was then discussed with the senior researchers in a transparent attempt to reach a consensus on the mapping. Participant quotations are embedded throughout the analysis to illustrate the patterns of meaning generated by the researcher. Participants are referred to by their assigned code, and any potentially identifiable information has been anonymised or removed.

RESULTS

Individual interviews were conducted with the final sample size of thirty-three adults aged between 22 and 85 (mean age = 55.90 ± 12.94; 19 males, 14 females; see Table 1). The duration of interviews ranged from 17 to 63 min (mean 43 min). If participants self-reported they had experienced more than one stone episode in their lifetime, they were categorized as recurrent stone formers for the purpose of this study (see Table 1).

Five themes and eleven subthemes were generated from analysis: (1) making sense of KSD, (2) normality paused, (3) the psychological burden of KSD, (4) the tensions of managing KSD and (5) improving understanding of KSD.

Making sense of KSD

This theme encompasses participant's narratives describing their attempts to make sense of initial symptoms and diagnosis, commensurate with the CSM-SR illness identity domain as well as participant's beliefs about the causes, coherence and timeline of KSD, aligning with corresponding CSM-SR domains.

I've something wrong with me

Many participants reflected on the accumulation of symptoms, including symptoms of colic, urinary retention, diarrhoea, nausea, vomiting, haematuria, fatigue and fever. Many participants anticipated that the severity of these symptoms indicated the presence of a serious health event: it was scary like….you cannot imagine being in that much pain unless it's very serious. (P12)

Both male and female participants likened their experience of pain to that of giving birth, which many used as the closest layperson's experiential point of reference: this pain is worse than having a baby! I was talking to a few women who gave birth, and they had kidney stones after – and they said it was a worse pain than pregnancy. (P1)

Disbelief then relief

On learning they had kidney stones, some participant's accounts were permeated with a sense of disbelief at a KSD diagnosis, suggesting an illness identity mismatch between the severity of the symptoms they experienced, and the kidney stone label assigned to them: when they said kidney stones and I was like kidney stones? I thought it was a big laugh like. (P14)

Following confirmation of KS, participants spoke of a sense of relief and used downward health comparisons to illustrate their relief that they had not been diagnosed with what they perceived to be a more serious health condition:

Grappling with unknowns

There were discrepancies between participants' accounts on the timeline dimension and causes of the condition. Participants often struggled with the clinical ambiguity of the condition's timeline and referred to information and data received from HCPs to manage this unknown: he [Doctor] said there is a 50% chance of recurrence of kidney stones….that the statistic was about 50%. (P17)

For other participants who experienced recurrent stone episodes, KSD was conceptualized as a lifelong condition, with a chronic course:

Normality paused

This theme linked chiefly with the CSM-SR consequences domain and represented participants' narratives of how normality was compromised by symptoms of KSD across work, family, relationships and social domains. Participants spoke of the impact on their intimate relationships:

I wanted to be intimate with him, because I like being intimate with him. But I could not…. and then he was afraid he was going to hurt me. (P25)

Some participants spoke of their decision to leave their employment as frequent sick leave was incompatible with some positions: The psychological burden of KSD

This theme and subthemes principally represented participants' emotional representations of KSD. In addition, ideas about identity, timeline, consequences and illness coherence had common currency across participants narratives.

KSD and the road to distress

The majority of participants described the psychological impact associated with the experience of KSD symptoms, often characterized by low mood and feelings of sadness: you felt kind of down in yourself, cos you kind of know that you are able to do all these things, but you know, you cannot do them because you are not well - which is not great. (P10)

A small number of participants recounted ruminating on the intensity of the pain, which gave rise to extreme psychological distress and suicidal ideation: [because] of the pain.…just, you know, end it all….just sick of it all. That's how I'd describe it anyways, bad thoughts were going through my head. (P1)

For some, ruminating on not achieving desired outcomes, such as the removal of all KS, or achieving this within desired timelines perpetuated feelings of distress: it [KSD] plays with my head….I was worrying too much, and I was constantly aggravated by doctors not doing enough in the kidneys….it just led me down that road eventually. (P13)

Self-consciousness and embarrassment

Both male and female participants spoke of the negative impact of urinary symptoms when in public. Some participants described feeling self-conscious about urinary symptoms and took actions to conceal these symptoms to avoid evaluation from others: the show of blood is alien to a man so….And I mean you would not use a public urinal….why? Because there could be blood –and you are not going to stand – well, you'd go into the WC rather than the urinal, but it's just those things. (P33)

These symptoms and their consequences were sources of concern and embarrassment for participants as symptoms required constant planning for adverse events which perpetuated feelings of anxiety:

Fear of KS recurrence

This subtheme highlighted participants' accounts of a constant state of vigilance to manage the possibility of another symptomatic kidney stone episode. Participants' monitoring of potential physiological changes in their body that made sense as part of KSD, and the cognitive appraisal of these symptoms, reinforced this response even when symptom-free:

It's always a bit of a worry when I am working…. you sort of get in tune with your body and how it feels. But sometimes it's sort of, false alarmed. If something does not feel right for a second or two you are like, oh no - I'm going to have to think about talking to my boss about potentially being out for a day or two to get surgery done. (P28)

The memory of the severity and intensity of colic they experienced was a key factor maintaining participants fear of a recurrent KS episode:

The tensions of managing KSD

This theme linked to the CSM-SR domains of personal and treatment control. Findings also suggested the importance of social contextual factors, such as patient–partner dyads, in managing KSD.

Self-management and its challenges

Participants reported that making dietary changes and increasing fluid helped imbue a sense of control. Yet, across participants' narratives those who perceived KSD to be caused by biological factors tended to express more complex beliefs about personal control: even before kidney stones, I would have drank 2 litres of water a day you know…. it does not make a difference to me - because it is a hereditary thing. (P29)

Participants named factors such as low motivation and time management as psychosocial challenges to engaging in selfmanagement. For some, the adherence to modifications for KSD waned in subsequent months following resolution of KS episodes, and possibly became de-prioritized by participants over time:

The supportive role of significant others

Many participants perceived that their partners used their personal understanding of KSD to support them with the management of the impacts of the condition. This was described as an important factor that helped participants adjust to the reality of managing treatment: like knowing going into the surgery that he [partner] is staying and dropping me off and collecting me and at home looking after me…. it's nice that someone is there for you. For even the small things, like, just to heat the soup for you, if you want soup, you know. (P25)

Partners also provided important reminders and cues to participants that supported adherence to selfmanagement strategies:

Control is in the doctors' hands Participants had received a variety of treatments for KSD that varied in success. For many, pharmacological management was viewed as the only effective means of managing symptoms such as colic:

Across many narratives, successful treatment was viewed as ‘the light at the end of the tunnel’ (P17). This view was reinforced by participants' perceptions of the doctors' confidence in the effectiveness of the procedures: he [surgeon] told me “I go in, I take them away, they'll be gone”. Sure, if I get a pain like that again I just go back and he can do it again if it comes to it. (P17)

However, many others described their turmoil at prolonged and multiple unsuccessful procedures with seemingly no medical resolution in sight. Yet, even during those times, participants continued to place a high external locus of control on doctors to manage KSD:

Improving understanding of KSD

This theme linked with the CSMSR domain of illness coherence and captured participants desire for more knowledge and the importance of improved doctor communication to bolster understanding of KSD.

The need for knowledge on KSD

Across narratives, participants knowledge of KSD varied, but it was evident that participants desired more information about the condition:

If somebody could just spend 5 minutes saying, this is what's happened to you….this is reasonably common, what we generally advise for people who have had kidney stones is that you do x, y and z….it may come again – I mean, 5 or 10 minutes with somebody who is well informed on these would have been helpful I think. (P23)

Participant's narratives also described how providing awareness and information campaigns on KSD would benefit the general population from a prevention perspective and increase the visibility of the condition:

HCP-patient communication and health literacy

Although many instances of effective doctor-patient communication were described, some patients' perceived inadequate communication at times which gave rise to feelings of frustration:

the way it [KS treatment] was discussed with me, I thought I'd be going down once every two or three weeks getting it done.… Instead my first kidney stones – it took three and a half years to get rid of. (P10)

Some participants spoke about how problems in communication gave rise to confusion as to the next steps in their care pathway: Whilst it may have been assumed by HCPs that participants understood surgical procedures, it was clear from participants' accounts that this understanding varied. Some described their alarm after procedures, such as an ureteroscopy, when realizing that KS were located using a flexible scope, typically inserted through the penis or urethra, and subsequently broken down using a laser:

when I woke up and I did not have any scars or anything, I was going how in the name of God did they do this like? and then I found out - now it wasn't an embarrassing thing…. but I was going, okay, well, it would have been nice to know they were going accessing this way. Because I expected to have a scar or something. (P19)

DISCUSSION

To the best of our knowledge, this was the first study to examine the experiences of patients with KSD which utilized the CSM-SR model as a lens to understand their experiences. We gleaned a better understanding of how people cognitively and emotionally represent KSD with generated themes broadly mapping on to domains of the CSM-SR model (Leventhal et al., 1980, 2016). Findings also provided evidence for how participants make sense of KSD that extended beyond the domains of the original CSMSR model, with patient partner relationships also identified as an important social contextual factor (DeLongis & Morstead, 2019) in one of the themes.

The CSM-SR model proposes that individuals are active problem solvers in managing and appraising threats to their health (Leventhal et al., 2016) and our findings captured how participants appraised the accumulation of severe symptoms, with an acute onset, to indicate a severe health event (Theme 1). Once KSD was confirmed, many participants spoke of the initial relief brought by diagnosis, potentially drawing on their initial understanding of the implications of KS as typically non-life-threatening and utilized downward comparisons with other health conditions (Wills, 1981). Downward comparisons are typically viewed as a cognitive strategy used by patients with chronic illnesses more generally to regulate their anxiety following diagnosis by assuming that others, who are perceived to have more serious health diagnoses, experience greater consequences (Arigo et al., 2014). Although KSD diagnosis brought a sense of initial relief for many, participants also described grappling with the more ambiguous characteristics of the disease including potential causes and the unpredictable timeline of KSD. Given that the CSM-SR proposes that individuals make assessments on how much personal control they have over the condition based on their perception of timeline and causes (Cameron & Leventhal, 2003) the perceived lack of certainty on these facets of KSD may have presented challenges in participants' adjustment to the condition.

A wide range of multi-dimensional impacts to everyday life as a result of KSD were reflected in the theme ‘Normality paused’ (Theme 2). Participants experienced significant psychological burdens associated with KSD (Angell et al., 2012; Chung et al., 2012; Diniz et al., 2007; Lien et al., 2015). Generally, participants narratives mapped onto timeline and consequences representations when describing these burdens. These impacts were seen to curtail intimate relationships and participants described waiting for life to start again once symptoms as a sequalae of kidney stones had resolved.

Participants narratives outlined factors that may further amplify the psychological burdens of KSD for patients (Theme 3). The experience of anxiety for participants with KSD has been documented in previous studies (Ragab et al., 2020; Raja et al., 2020), but our findings provide insight into specific behaviours potentially engaged in (e.g., avoiding public urinals) to avoid urinary symptoms being perceived negatively by others and to manage their affective response of self-consciousness and embarrassment. Furthermore, painful symptoms were associated with experiences of low mood, with some participants experiencing extreme psychological distress, including suicidal ideation. Many KSD patients perceived that pain could only be relieved by pharmacological means (e.g., morphine). It is possible that participants subsequently appraised their personal coping strategies to manage this severe pain (colic) as being ineffective, giving rise to or exacerbating their experience of psychological distress in line with the CSM-SR model (Leventhal et al., 1980, 2016).

Many participants described the fear of KS recurrence, even when symptom-free. Fear of recurrence is well articulated in conditions such as cancer (Durazo & Cameron, 2019) and stroke (Townend et al., 2006). Whilst Nouri et al. (2021) documented participants apprehension relating to potential recurrence, our study described needing to be constantly vigilant and on guard for symptoms that may alert them to a recurrent episode. This experience is likely associated with anxiety and worry within this representation of recurrence for patients in this study.

Participants had varied perspectives of personal and treatment control in managing KSD (Theme 4). Participants who held stronger causal perceptions about KSD resulting from ‘fixed’ factors (e.g., genetics), tended to question the perceived effectiveness of self-management strategies. Whilst these strategies, which include dietary modifications and increased fluid intake, were perceived as straightforward recommendations, many of these participants described their adherence to such recommendations as challenging. Additionally, patients' key perceptions of the consequences and timeline of KSD were also demonstrated to change over time. This was illustrated by participants reporting that adherence to selfmanagement waned over time as the immediate response to KSD faded, in terms of assessment and treatment of the acute episode, providing insights into adherence barriers for patients in this study. Similarly, recent research suggests that adherence remains low at follow-up, despite initial increases in such fluid intake behaviour (Wright et al., 2022). Patients' perspectives, elicited in this study regarding the reduced need for sustained self-management provides important information that emphasizes the need for health care providers to continuously emphasize patients' agency in the management of their KSD.

Our findings on the role of partners in providing emotional and practical support in managing KSD highlights the influential role of social contextual factors in how people make sense of illness that extends beyond the domains of the original CSM-SR model (DeLongis & Morstead, 2019). This is an important finding, as typically, patients and partners share information and discuss illness, thus developing pathways of shared meaning making of illness which in turn guide behaviours including coping (Berg & Upchurch, 2007). Patients' narratives also demonstrated that their representations of KSD within this theme also utilized their partner's representations of KSD as a source of support and guidance, in line with other research suggesting that partner's representations can facilitate better patient adaption to illness (Karademas et al., 2019). For example, the narratives provided by participants in the subtheme, ‘the supportive role of significant others’ showed a dynamic interplay whereby the significant other reminded their partner with KSD of the need to adhere to specific dietary constraints due to the partners perceptions of the cause and likely consequences of not adhering to dietary recommendations. As such, the illness perceptions of key family members may be important in promoting optimal adjustment and adherence to KSD selfmanagement strategies.

Overall, there was a clear desire from participants for an improved understanding of KSD, aligning with the domain of illness coherence (Theme 5). Some participants reported they did not receive adequate information about KSD or self-management. Suboptimal HCP-patient communication may further compound low levels of illness coherence. Illness coherence is an important factor in the creation of an internally consistent personal illness model, and lower levels of illness coherence may lead to poorer adjustment to the condition (Hagger & Orbell, 2021). In this regard, the need for increasing the understanding of KSD at a patient level, and through informational campaigns at a public health level had common currency in the experiences of participants. This finding is commensurate with studies calling for better informational campaigns to increase awareness in relation to urological conditions more generally (Gagnon et al., 2009; Zhao & Anger, 2021).

Clinical implications and directions for future research

This study extends our understanding of how patients cognitively and emotionally represent KSD with several implications for clinical practice. HCPs may find it beneficial to consider routinely assessing for psychological distress, including suicidal ideation, particularly during acute KS episodes. Access to timely psychological care where appropriate would also be helpful. Secondly, our results suggest the important role of HCP's gaining a better of understanding of how patients make sense of KSD which may aid identification of unhelpful beliefs as targets for intervention. There is a growing body of evidence of interventions informed by the CSM-SR which have been shown to be effective at targeting illness perceptions (Fortune et al., 2004; Petrie et al., 2012), and improving illness coherence (Vollmann et al., 2021). As such, there may be a role for application of the CSM-SR in the design of specific interventions targeting modifiable illness perceptions in KSD and which may improve patient outcomes and adjustment to the condition.

Our findings highlight participants' challenges in adhering to self-management strategies, particularly in the long term where adherence behaviour may become less automatic over time. Research has highlighted the role that automatic processes, such as automatic coping responses (Henderson et al., 2009) and implicit attitudes (Chevance et al., 2019), may play in long-term adherence to self-management and the significance of targeting treatment- related habits in interventions (Orbell & Phillips, 2019; Phillips et al., 2016). Importantly recent research suggests that a digital fluid intake intervention (Conroy et al., 2020), shows promise in supporting habit formation. The implementation of digital tools may also reduce the burden on key family members, such as partners who we have reported may share responsibility for aspects of disease management. Given that as few as 13% of patients source information on prevention strategies independently, providing tailored individual counselling on KSD with this patient group may be important (Tarplin et al., 2016). Indeed the communication of self-management strategies and exploration of patients' specific illness representations that may act as barriers to sustained behaviour change may have additional relevance for services. There is significant heterogeneity in the clinical characteristics, disease histories and experiences of patients with KSD and it is possible that such factors influenced individual's experiences. Future research may benefit from exploring the lived experience of these demographic and clinical differences, for example, single episode stone formers versus recurrent stone formers, variation in stone compositions, time since diagnosis and age, in a comparative manner to better understand the variability of experiences within this population in terms of disease burden.

CONCLUSION

This study is the first to utilize the CSM-SR to explore how KSD patients think and feel about their condition and has examined salient cognitive and emotional representations within a social or interpersonal context that underpins how these patients make sense of KSD. Importantly, we identified factors reinforcing patients' experiences that may amplify, or ameliorate, the potential burden of KSD for individuals. From a clinical perspective, routine assessment of psychological impact in individuals with KSD and timely access to psychological care would be helpful. In addition, HCPs may benefit from gaining a better understanding of patients KSD-specific illness representations, which may prove helpful in managing both the impacts and outcomes, for this common, complex and hugely under-researched condition.