‘It gives you the skills of how you can cope’: Exploring the self‐reported experience of patients receiving in‐centre haemodialysis on participating in chosen art activities

Abstract Background Increasing numbers of patients are receiving dialysis, particularly in high‐income countries. Patients receiving haemodialysis often experience fatigue, anxiety, depression and boredom. It is suggested that arts activities could have a therapeutic effect. Objective This study aimed to explore patients' perspectives of participating while on dialysis in chosen arts and creative living activities provided by tutors at the bedside. Design Qualitative semi‐structured interviews in the interpretive tradition were conducted, with thematic analysis. Setting and Participants Fifteen patients of different ages, genders and ethnicities who participated in an arts activity while receiving haemodialysis in an inner‐city dialysis unit in England were included in this study. Results Participants reported positive experiences of engaging in art activities. Their views on the value of the activities were grouped into five themes: diversion from receiving haemodialysis, a sense of achievement, contribution to a more positive self‐identity, increased confidence and motivation and a therapeutic talking relationship. Participants suggested that patient peer promotion of the activities could increase uptake, with patient choice of activity seen as important. Conclusions Participation in a chosen arts activity while receiving haemodialysis was perceived by patients to have positive psychosocial effects. We theorize three potential explanatory mechanisms for these effects: That the experience of participating in the activities engendered positive psychological states of ‘being in the flow’; enhanced self‐esteem to add to personal coping mechanisms; and offered additional facets to the patient's identity that countered the stigmatizing effect of receiving dialysis. Patient or Public Contribution Patients and public representatives advised on the design, research methods and tools.

patients. 2 In 2018, about 26,000 adult patients received dialysis in the United Kingdom, with most patients (83%) receiving haemodialysis (HD) in a hospital or satellite dialysis unit. 3 People of Black and minority ethnicities, those aged older than 65 years and males are overrepresented in this patient group. 3 Patients attend a dialysis unit usually three times a week for 4-5 h at a time. 3 Patients are connected to a dialysis machine throughout. A major challenge for patients is the considerable impact on their daily lives. Patients often experience fatigue, low mood, anxiety, depression and boredom, in addition to medical complications due to the limitations of the dialysis in serving renal functions. 4 Many people on dialysis are known to experience a poor health-related quality of life. 5 Over the last 20 years, interest has grown internationally in determining the benefits that participation in the arts, that is, visual arts, dance, film, literature, music, singing, crafts and online arts, may bring to well-being and quality of life. 6 Some Western European countries, such as Ireland and Norway, have policies that increase the contribution of art and culture to health and well-being. 6 In the United Kingdom, a parliamentary group has advocated for research into the potential health benefits of arts for people living with chronic diseases. 7 There is limited evidence assessing the benefits or otherwise of using creative arts in hospitals to improve the quality of life for patients receiving HD. A systematized literature search 8  Spain. The papers reported on different types of arts activities: single art activity (drawing), 9,10 two activities (creative writing and visual art), 15 multiple activities (e.g., printmaking, mosaic making, crocheting) 12,13 and mixed active and passive activities (e.g. mandalas qmaking alongside clown visits). 10,14 Five studies involved group activities, 9,[11][12][13][14] and two studies involved individual activities. 10,15 The research methods were varied: an individual patient case study, 11 patient interviews by purposive sampling, 9,12,13 observational studies using survey instruments before and after a mixed arts programme 11,14 and mixed methods including a pilot randomized control trial and qualitative interviews. 15 The mixed arts programme study, which was performed in the United States with 46 patients, reported significantly improved scores on the quality-of-life domains described as social functioning and bodily pain, for patients who had high rates of participation. 11 The Spanish study, which included 41 patients participating in a mixed arts programme, found no statistical difference in anxiety or quality-of-life measures after the programme. 14 All seven published studies reported, mostly briefly, or on the basis of professional views or reports of health professionals, that the arts programme was positively viewed by participants. Our analysis of the five studies 9,10,12-14 that reported patients' reasons for the positive comments found that helping pass time and alleviating the boredom of receiving HD were the most frequently mentioned reasons. Although it is hypothesized that these activities improve mood and well-being, there is limited evidence of effect, particularly from the patient perspective, 15 or explanatory theories as to the mechanism of the effect. This paper adds to the existing literature by presenting data from the perspective of patients on HD of their broad experience of participating in an arts programme in the United Kingdom, which offered choice from a range of activities and individual bedside tutorship during dialysis. This contrasts with previous studies focused on asking patients or professionals if their arts programme participation was a positive experience or not and on programmes with no choice (or only two options in the study reported by Carswell et al. 15 ) and group tutorship. It is not known how many arts programmes are run in the 71 adult UK dialysis units, but a survey of 17 units found that few patients had the opportunity to participate in arts and crafts activities, although 26% of patients reported that they were interested in participating. 16 In one inner-city English NHS Hospital Trust, a hospital charity has provided an arts and creative living activities programme delivered by tutors at the bedside since 2016 for patients on HD. Patients were offered, unusually for these types of programmes, a wide choice of arts and creative living activities, including drawing, painting, sculpture, creative writing, languages and IT/ screen-based skills. Between July 2018 and January 2020, 127 of the 294 patients receiving HD 4 engaged in an activity at least once. We and engagement research expert group and from a kidney charity, volunteered to work with researchers, on a partnership basis, 19 to develop the study. They were closely involved in developing the study design, the data collection methods and tools and the data analysis approach. The study setting was an NHS Hospital Trust with an in-hospital unit and three outlying centres providing HD.

| Participants
Eligibility criteria specified consenting adult patients, aged 18 years or older, who had engaged in an arts or creative living activity while receiving HD in the hospital trust in the previous 15 months. Patients were excluded if they were not clinically stable and well enough to take part or lacked capacity to provide informed consent. Sampling was purposive, designed to provide diversity in terms of age, gender, ethnicity, dialysis unit, activities experienced and extent of participation. The arts programme coordinator identified every second patient from their list of patients receiving HD in the programme and gave these details to the clinical team. The clinical team identified patients who fulfilled the eligibility criteria. A member of the clinical team made the initial enquiry about participation in the study and whether eligible patients were willing to have their contact details passed to a study researcher. Only patients indicating potential interest in participation were sent or provided with a consent form and study information sheet. This provided an explanation about the study and that they would be contacted a week later by a study researcher, which would give them an opportunity to ask any questions. They could choose to be interviewed by telephone or face to face while present in their dialysis unit and at a date/time of their choice. Four of the patients introduced to the researcher withdrew before consenting due to ill health. Recruitment continued until it was judged that data saturation in data collection had been reached, that is, when no new views or perceptions seemed to be elicited in interviews and data replication occurred. 20

| Data collection
Semi-structured interviews were conducted with open-ended questions and supplementary prompts to allow the key areas of interest to be explored without being prescriptive about content. 21 A topic guide was developed based on the study questions and informed by discussions with PPIE representatives.
A key topic that they suggested for inclusion was how and when the offer of participating in an arts or creative living activity was made to patients, hypothesising that this may influence the pa-

| Data analysis
Inductive thematic analysis was used based on its epistemological and theoretical flexibility. 22 Transcripts were read through to familiarize with the corpus of the data and then analysed by one researcher using open coding and constant comparison, informed by the field notes. A framework of themes was developed from the analysis, together with a code book, and used to structure verbatim responses onto a spreadsheet. Where data did not fit generated themes, new codes were developed or existing ones were revised until all data were coded. This reflexive process 22 (Table 1).
Fourteen participants were on HD. One participant had discontinued HD after receiving a kidney transplant and two others had restarted HD treatment after kidney transplant failure. All participants receiving HD were attending their dialysis unit three times a week for 4 h at a time on a dialysis machine.
The themes and subthemes extracted through analysis are summarized and described in Table 2. 3.1 | Perceptions of the offer of activity participation and influences on take-up

| Relief from boredom
For many participants, the offer of undertaking an activity was perceived as a welcome relief from boredom. Some participants described time as passing slowly during HD. Others talked about how time spent on HD was 'empty' time, or 'time away from living'. Participants' accounts were often permeated by expressions of frustration, anger or distress. In a few cases, participants reported that because of the boredom, they would have been willing to take up almost any activity.
Look being incarcerated here is tedium. Anything that breaks up tedium is a welcome relief. If it includes a bit of creativity, if it involves a bit of education, all the better.

| Therapeutic talking relationship
A few participants reported that part of the enjoyment of undertaking an activity was the opportunity to talk with someone (the tutor) while on HD. 'It definitely made the mood a little bit lighter… just looking forward to speaking to somebody else' (Patient 6). For these participants, talking seems to have been therapeutic for a variety of different reasons: break from isolation; association with a human rather than a machine; discussion on topics other than dialysis; and an opportunity to discuss emotions.

| Suggested improvements
Participants suggested several improvements for the arts programme. Our participants' positive experiences, beyond the immediate absorption of the 'challenging' activity, could be explained by considering aspects of cognitive adaptation. Taylor 26 argued that people faced with personally threatening events adjusted and coped through three processes: a search for meaning in the experience; attempts at mastery over the event or more generally in life; and attempts to build self-esteem. These processes were described with reference to patients with cancer, although they are likely to apply to patients with other chronic or fatal diseases including patients with ESKD. There has long been evidence of the continuous coping and adjustment challenges faced by patients with kidney failure and the impact of dialysis on self-esteem, particularly in relation to feeling less capable and productive than before kidney failure. 27,28 We theorize that the accounts of more positive self-identity and increased confidence provided by our participants reflected changes in their self-esteem contributing to overall well-being. Several participants also reported distinguishing themselves favourably from other dialysis patients who they perceived as more passive and disengaged because they had chosen not to participate in an activity. Making active self-enhancing comparisons with others in a similar position, to compare positively downwards, was described by Taylor 26 as a method of bolstering selfesteem. It is unknown the extent to which the patient group who accepted the offer of engaging in an activity, and volunteered for the study, were already active in the three areas of cognitive adaption that Taylor 26 described. This requires further investigation in future studies.
An alternative explanatory theory can be found in Goffman's 29 theory of stigma. A stigmatizing condition is characterised by discrediting attributes being assigned to individuals by others. Our findings showed that enhanced self-worth for some participants was linked to positive changes in family members' perceptions of them consequent to engaging in an activity. Changed perceptions appeared to be an affirmation of their identity as one separate from that of a patient on dialysis. We theorize that in undertaking and engaging in the arts and creative activities, the participants disrupted the assignment of discrediting attributes by others and lessened the stigmatizing effect of receiving HD. 29 This also requires further investigation and testing.
A third potential explanatory theory for the positive experiences described by our participants could be the reported therapeutic conversations with some tutors. This programme provided one-onone tuition at the bedside rather than group activities (as described by most other studies 9,[11][12][13][14]. There is evidence that cognitive behaviour therapy has beneficial effects for dialysis patients diagnosed with depression. 30 The influence on mood and well-being of one-onone interactions compared to group activities, which encourage more social interaction, is another area for further examination.
This study also reports that for many participants, having choice was important as to which arts and creativity living activity they engaged in. This is congruent with findings from previous literature concerned about how best to support the mental health and wellbeing of the increasing numbers of people living with chronic and end-stage health conditions, including through participation in the arts. 7 They will also contribute to the evidence base for funding artsbased programmes for these patient groups. The study findings will further be of value to clinicians and decision makers considering specifically how to support the therapeutic needs of patients receiving HD and the contribution that arts programmes can make.

| Strengths and limitations
A major strength of the study was PPIE involvement in the design, However, the team approach to analysis and drafting the paper helped mediate against a single interpretation. The study was not funded to translate study materials into different languages or conduct the interviews in languages other than English. Nevertheless, the study participants were diverse in terms of age, ethnicity and dialysis experience, thus increasing the potential transferability of our findings. The study did not actively seek to ask eligible patients who had not participated in the arts programme their reasons for nonparticipation, as there were no records of who had been offered the programme and declined. However, to mitigate this limitation, study participants were asked their views on why other patients might have chosen not to participate in the programme.

| CONCLUSION
This study reports positive patient experiences of engaging in a chosen arts or creative living activity while receiving HD, which in turn had a positive influence on the dialysis experience. Irrespective of the activity chosen, participation was perceived to have therapeutic value through improving mood and well-being as well as generating longer-term benefits associated with increased confidence and enhanced self-esteem. This evidence will be of value to policy makers, service commissioners and health professionals considering introducing or supporting such programmes. Our analysis and interpretation suggest theoretical mechanisms for these findings and as such adds both new knowledge to the evidence base and theoretically informs future studies of impacts and outcomes.