Starting on haemodialysis: A qualitative study to explore the experience and needs of incident patients

Dialysis can be very stressful with the initial months onto treatment being highly critical in terms of both adaptation and mortality. This qualitative study aimed to explore the lived experiences of incident haemodialysis patients in Singapore. Topics related to the end-stage renal disease diagnosis and haemodialysis treatment were raised with 13 incident haemodialysis patients in the form of semi-structured interviews, and interpretative phenomenological analysis was undertaken as the framework for data analysis. Emotional distress, treatment-related concerns and social support emerged as main issues following a critical review of themes. Our study revealed that incident haemodialysis patients have emotional and informational needs, highlighting the importance of intervention programmes in particular to this patient group to promote better psychosocial adjustment to the disease and its treatment.

Keywords: ESRD; haemodialysis; incident; psychosocial; qualitative; adjustment

Haemodialysis, a form of treatment for end stage renal disease (ESRD), affects multiple domains of patients' lives as it involves a manifold regimen of frequent dialysis sessions, dietary and fluid restrictions, multiple medications and prescription of physical exercise (Sharp, Wild, & Gumley, [27]). Beginning on haemodialysis imposes psychosocial demands as patients are required to adjust to re-align life to accommodate treatment exigencies and cope with actual or expected losses, i.e. in health, energy, occupational and other roles, and/or threats of death (Hughes, Wood, & Smith, [14]). Initial months on dialysis can therefore be very stressful; haemodialysis patients exhibit symptoms of anxiety and depression (Chilcot, Wellsted, Da Silva-Gane, & Farrington, [8]; Cukor et al., [9]), which are shown to be associated with lower survival rates (Kimmel, Weihs, & Peterson, [18]; Young et al., [37]). With cohort studies revealing a peak of mortality rates at the third month after starting treatment (U.S. Renal Data System, 2010), the early months of haemodialysis emerge as a critical phase for incident ESRD patients in terms of psychosocial adaptation and risks of death. In Singapore, the ESRD incidence rate in 2006 measured at 253 per million population (pmp) (Health Promotion Board, [12]), surpassing more than twice the rate in United Kingdom, which is 113 pmp (Ansell et al., [2]). Three-month mortality rates of incident patients were also determined to be 13.7% in the same year (Health Promotion Board, [12]). As little is known about the psychosocial issues during this acute duration, these substantial figures accentuate a need for further research. However, current studies delving into mortality risks of new patients predominantly focused on clinical predictors or factors (Atkinson, Oberal, Neu, Fivush, & Parekh, [3]; Lee et al., [20]; Wolf et al., [35]), while psychological intervention studies mainly targeted adherence behaviours rather than psychological responses (Katzir et al., [15]; Lamping & Campbell, [19]; Welch & Thomas-Hawkins, [34]). Studies examining psychosocial issues, concerns and needs during the initial months of treatment thus warrant attention since current frameworks are insufficient to fully address the incident patient group's needs. To bridge the gap in this knowledge of care, this qualitative study aimed to identify the main concerns and needs encountered by incident patients via the exploration of their lived experiences during the early months on haemodialysis. It is hoped that the findings of this research can guide the development of programmes specific to incident haemodialysis patients to facilitate psychosocial adjustment.

Qualitative, semi-structured interviews were conducted with incident haemodialysis patients, defined as ESRD patients undergoing haemodialysis for a period of six months or less. This study was part of a randomised controlled trial examining a self-management intervention for haemodialysis patients (see Griva et al., 2011).

Respondents were recruited from the patient pool receiving haemodialysis at National Kidney Foundation Singapore (NKF), an organisation providing treatment to 64% of patients in Singapore (Health Promotion Board, [12]). A sequential sample was sought until theme saturation. Non-English or non-Mandarin speakers, patients with severe impairments in vision or hearing, or patients with mental and/or emotional disorders were excluded. Eligible patients were recruited over telephone; written informed consent was obtained during the interviews. The National University of Singapore's Institutional Review Board approved the research protocol.

Interviews were conducted in either English or Mandarin. The interview schedule is shown in Table 1. An open-ended conversational style was adopted for patients to relate their experiences and all questions were consistently proposed, although the sequence varied depending on the conversational flow. Interview sessions ranged from 35 to 50 minutes and were audio recorded and verbatim transcribed. Interviews conducted in Mandarin were first transcribed into Chinese before being translated into English for data analysis. All respondents received a nominal sum of reimbursement for their participation.

Table 1. Interview schedule.

Seeking to understand how patients are making sense of their psychosocial surroundings together with their individual lived experience (Lyons & Coyle, [21]), interpretative phenomenological analysis (IPA) was applied as the framework for data analysis. All investigators jointly reviewed clustered themes and illustrative quotes. The data analysis process occurred after each interview session immediately. Saturation of themes occurred after 13 interviews.

Socio-demographic information on the 13 respondents and the language used for interviews are presented in Table 2. The time duration between the respondents' onset of haemodialysis treatment and the point of data collection averaged at three months (ranging from two to five months). The mean age of the respondents was 52 (range 39–63; SD = 8), with seven females and six males. The participation pool consisted of nine ethnic Chinese and four Malay patients. All 13 participants initiated haemodialysis with a temporary central venous catheter (CVC) and N = 8 had diabetes.

Table 2. Characteristics of respondents.

IPA revealed three major thematic clusters – "emotional distress", "treatment-related concerns" and "social support". The main themes and corresponding sub-themes are shown in Table 3.

Table 3. Summary of results.

Emotional distress recurred as the dominant theme of incident patients' illness experience; all respondents made reference to factors generating emotional distress or its manifestations.

Self-perception as a burden to caregivers propagates emotional distress for the respondents as they perceive themselves to incur excessive inconvenience for their family members.

I think that I am going to give a lot of trouble to my siblings, giving a lot of problems to your loved ones. They have to take time off (work) to do this and that for me ... .so I became a burden. (R7)

Patients felt a loss of their life purpose as they felt that their life is now devoid of any ambition, or that there is nothing in the future for them to look forward to after being diagnosed with ESRD.

It's really meaningless living on. I have to suffer like this every day and not feel like a human being. It's not a lifestyle anyone can take. I felt like there is no meaning in life. (R11)

Now there is a lack of purpose ... I have nothing to look forward to at the moment. (R12)

Issues of death also emerged when patients related their emotional distress. A portion of respondents was confronted with the threat of death, a source of emotional distress, as they were concerned about the fatality of ESRD.

Initially when I was diagnosed, I felt that my life is so short. Within that two weeks I felt depressed ... I felt that I would just die anytime. (R13)

Some respondents harboured suicidal thoughts mainly upon realisation of the lifelong nature of haemodialysis rather than the diagnosis of ESRD per se.

I really want to commit suicide. I heard that if you don't go for dialysis for one week, you will die. (R5)

As most patients were diagnosed late, typically when seeking medical attention for what they considered as non-renal symptoms such as breathlessness, stomach discomfort or insomnia, subsequent diagnosis of ESRD was shocking.

I feel that I cannot breathe, so I went for a check-up at the hospital and water had already accumulated in my lungs ... I was shocked. I have a kidney problem. (R1)

All reported hardly anticipating kidney-related diagnosis/complications for their symptoms. This led them to deny or reject the diagnosis of ESRD, and the immediate need for haemodialysis. Non-acceptance of diagnosis was often associated with expressed intention to use other treatments. Four respondents further indicated their intention of sole reliance on medication in order to delay or avoid initiation of haemodialysis treatment.

Initially, I was just rejecting it. I did not want to go for dialysis. I did not want to fix my fistula. I will try all medication and see whether it helps. (R7)

Physical symptoms of thirst, fatigue, vertigo and muscle cramps were salient in patients' recollection of early experiences of haemodialysis. Coping with thirst, which is further aggravated by need for fluid restriction, dominated the narratives of patients. Fatigue, vertigo and muscle cramps typically reported post and during dialysis interfere with everyday activities and mobility (e.g. standing up and walking independently).

Every day you think about drinking water. Even now my mouth is drying out ... I think about water, how much fluid I can drink and the quota for the day. (R12)

Although the experience of unpleasant symptoms and their implications dominated the interviews, some patients highlighted how the initiation of haemodialysis improved their sleep, appetite or energy.

Working and even walking used to tire me. I can't sleep and eat. But now that I'm on dialysis, my life changed totally. I feel very healthy. It's much better now. (R4)

Intrusiveness of haemodialysis on preferred lifestyle and activities emerged as patients' major concerns. Limitations of work, travel, social life as well as fluid and diet restrictions were discussed and linked to the feelings of despair and frustration.

I used to be a traveler. I enjoyed my games, exercise, swimming, walking ... But I can't do them anymore ever since I got my kidney problem. (R7)

I used to drink a lot of water when I don't have my kidney problem. Water control is very frustrating for me now. (R6)

Common to all accounts was the time-intensive schedule of haemodialysis posing restrictions and depriving patients from opportunities to enjoy life.

I have to come here (dialysis centre) every Monday, Wednesday and Friday. It's a very rough time for me, sitting here for four hours. (R5)

Haemodialysis is three times per week and I have to wait (at the dialysis centre). Time for work becomes a problem ... and time to spend with my family. (R10)

Access-site related concerns include fear of infection and maintaining cleanliness. Pain and discomfort arising from the needling of access-sites were however the most significant among these concerns.

I am worried about the pain. Needling is painful, I am really afraid. (R8)

Fistula, needling ... I am worried about the pain. My veins are very small, so there'll always be complications. (R13),

Scars surfacing from access sites also contribute to body-image disturbances.

Looking at their (established patients') scars, I feel so scared. How do you expect me to go out in the public? I hide myself. (R5)

It is interesting to note that in some patients, anticipation of scar formation from the access site is sufficient to generate anxiety.

Six interviewed respondents expressed their hope in receiving a kidney transplant, indicating that it gives them something to look forward to. However, when transplantation is not an option, the realisation of permanence of life on dialysis led to feelings of helplessness and despair.

I hope to maintain my current health state while waiting for a kidney. It's the best to get a kidney transplant. (R8)

There is no alternative treatment ... it became a fact. Nothing can salvage it. (R2)

Most respondents discussed seeking and receiving informational and instrumental support from family, friends, co-workers and healthcare professionals.

Informational support was especially highlighted. The majority of respondents sought information about issues surrounding ESRD and its treatment from fellow established haemodialysis patients.

My friend is already on dialysis for 15 years. When it's my turn to begin, I asked if there's any pain on the back. She said no. (R1)

Instrumental support exists in the form of tangible aid and services, such as timely reminders of medication intake and accompaniment to dialysis sessions. Respondents' spouses most often provided such support.

My wife left her job to nurse me. She said she would nurse me back to my normal life. (R7)

Emotional distress, treatment-related concerns and social support emerged as the key themes in incident patients' lived experiences early after dialysis onset. Emotional distress is expressed by feelings of being a burden, losing one's purpose in life and voiced in suicidal thoughts, which highlight the need for support programmes for new patients on haemodialysis. Previous studies have similarly documented high rates of depression in prevalent haemodialysis patients (Chilcot et al., [8]; Kimmel & Peterson, [17]; Young et al., [37]), yet this is the first study to show that distress is manifested early upon initiation of haemodialysis treatment. This emotional experience relates to ESRD diagnosis, as well as the need for long-term dialysis. Feelings of being a burden underlying emotional distress are in line with previous studies (Suri et al., [28]); however, it is mainly the anticipatory worries of becoming a burden to family members that are commonly reported in new patients. It is important to explore these concerns involving patients and family members as caregiving in the context of dialysis can be physically and emotionally draining (Alvarez-Ude, Valdes, Estebanez, Rebolio, & FAMIDIAL Study Group, 2004; Belasco & Sesso, [4]). Incident patients also have difficulties accepting the diagnosis and need for dialysis, which can possibly lead to delay in making timely decisions on modality or access, and herein unplanned dialysis onset. This may in turn exacerbate or intensify emotional experience, generating higher emotional distress and trauma than a carefully planned dialysis onset as patients have less time to mentally prepare for the start of haemodialysis and concomitant necessary changes. A previous study conducted in Singapore demonstrated 64.9% of patients to require urgent dialysis initiation via catheters (Teo, Ma, Xu, Li, & Lee, [29]), aligned with multiple studies that exemplified such strong tendencies in incident patients (Moist, Trpeski, Na, & Lok, [22]; U.S. Renal Data System, 2010; Yoon et al., [36]). On this note, it is then crucial to explore the relationships between avoidance, rejection of disease diagnosis and need for treatment, and rates of unplanned dialysis.

Symptom burden dominated the majority of patients' narratives – haemodialysis initiation is marked by experiencing unpleasant symptoms related to dialysis procedures, especially thirst, fatigue, vertigo and muscle cramps (Danquah, Zimmerman, Diamond, Meininger, & Bergstrom, [10]; Thong et al., [30]), which outweigh the relief from alleviation of uraemic symptoms. Symptoms hinder adaptation to haemodialysis and fuel emotional distress (Kimmel, Emont, Newmann, Danko, & Moss, [16]; Weisbord et al., [33]). Recurrent physiological pain and scars from haemodialysis treatment procedures also impinge upon psychosocial well-being (Brown, McKenna, Siddhi, McGrouther, & Bayat, [6]; Partridge & Robertson, [24]; Rumsey, Clarke, & White, [26]). Taken together, negative symptoms, intrusiveness and access-site related concerns operate simultaneously to pose difficulties in early psychosocial adjustment in incident haemodialysis patients.

A recurring topic in patients' narratives was hope for kidney transplant. Patients new on dialysis might discern haemodialysis as a temporary form of treatment before kidney transplant, but this hope can transform into uncertainty and lead to emotional distress when the actual waiting time exceeds the "expected" waiting period for an available transplant (Moran, Scott, & Darbyshire, [23]). Hope can be instrumental in ESRD adjustment (Billington, Simpson, Unwin, Bray, & Giles, [5]), but patients need to objectively evaluate the prospects of cadaveric kidney transplants given the long waiting lists, rejection rates and other transplant-related complications and risks (U.S. Renal Data System, 2010).

Our research findings demonstrated that patients actively seek and value informational and instrumental support during the early stages following dialysis initiation through various sources, such as family members, friends who are established haemodialysis patients, co-workers and healthcare professionals. Social support has been demonstrated to promote better adjustment and disease management (Plantinga et al., [25]; Untas et al., [31]). It is expected that incident patients would exhibit greater informational needs pertaining to actual haemodialysis procedures, lifestyle treatment aspects of renal and fluid regulations, or more general informational/instrumental needs that may be related to navigating through the health care system and/or organisational structures. In most cases, information was obtained informally instead of established programmes or initiatives; thus, it might be useful to explore how patients' early education needs could be met through structured programmes and activities that will involve both healthcare professionals and fellow patients. To this end, peer support programmes between incident and established patients have been conducive in providing practical disease information and treatment (Hughes et al., [14]); therefore, its implementation can be instrumental especially considering its absence in Singapore. In contrast to patients' experience of emotional distress, there was little mention by patients about perceived or received emotional social support. This likely reflects patients' priority in obtaining practical information about ESRD and haemodialysis over dealing with their emotional concerns, pointing out stronger informational needs. However, this phenomenon can also be associated with Asian values when considering the influence of culture. In the Asian context, distinctions between family and non-family are striking; unfavourable life events are restricted to those in the family for fear of "degrading" the family name and are thus not openly discussed with those outside of it (Chan, [7]). Patients might therefore exclusively relate their emotional needs to their caregivers and/or family compared to informational needs, as the former reinforces the notion of stigma towards chronic diseases that is purported to be stronger in Asian societies (Helman, [13]). The appearance of more expressed informational needs over emotional needs in our study might henceforth be the resultant of culture-specific factors at play.

The sample size was small due to the nature of qualitative research. Caution must be exercised when generalising findings as all participants underwent haemodialysis at the same renal organisation.

This study aimed to identify the psychosocial factors among the early experiences encountered by incident patients to facilitate better adjustment to ESRD and its demanding treatment regime. The themes were namely "emotional distress", "treatment-related concerns" and "social support", but topics pertaining to symptoms burden and hope for transplant were also salient. Our results indicated emotional distress to be manifested early upon initiation of haemodialysis treatment and the emotional and informational needs of incident patients, highlighting the importance of intervention programmes specific to this patient group. The early months of haemodialysis are a critical phase for psychosocial adaptation and mortality, henceforth prudent consideration of issues occurring at this stage is essential when administering care for this group of patients.

This research was supported by grants from National Kidney Foundation Research Fund [NKFRC2008/07/24], and Ministry of Education – NUS Academic Research Fund (start up) [FY2007-FRC5-006] to KG, which are gratefully acknowledged. The authors would also like to thank the healthcare professionals at NKF dialysis centres for their support, staff from Department of Care and Counselling at NKF, and all patients for giving their time to complete the interview.