ORIGINAL ARTICLE
A ‘lost life’: coming to terms with haemodialysis Susan Monaro, Glenn Stewart and Janice Gullick
Aims and objectives. To describe the essence of the lived experience of patients and families in the early phase of long-term haemodialysis therapy. Background. Past qualitative research has taken a long-term view describing established haemodialysis therapy as it impacts on physical limitations and changes in self-concept, psychosocial well-being and sense of dignity with subsequent consequences for family roles and financial status. Design. This study used the qualitative approach of Heideggerian phenomenology. Methods. Eleven patients with end-stage kidney disease who had recently initiated haemodialysis and five family carers engaged in semi-structured interviews. These were recorded and transcribed verbatim and analysed using an hermeneutic framework. Results. The essence of the early dialysis experience was a ‘lost life’, and participants were overwhelmed by shock and grief. This appeared to result from a lack of mental and physical preparation for dialysis as a long-term management strategy. A loss of sense of self, loss of spontaneity and personal freedom and loss of social connectedness challenged the participants’ ability to contribute to family and community. Changed body sensations ranged from improved wellness to a sense of depletion and fatigue. Family caregivers found the caring role was unremitting and required intense vigilance. Conclusions. Patients and family members in the early phase of dialysis may have difficulty perceiving a positive future. Relevance to clinical practice. A greater focus on preparation for the possibility of dialysis and frameworks of care that support adjustment to this new way of life are of vital importance. Family presence during haemodialysis and support groups for patients and family should be actively facilitated.
What does this paper contribute to the wider global clinical community?
• Acknowledgement of the multi• •
ple losses experienced by people initiating HD. Consideration of patient and family supports groups and/or clinical psychology. Infrastructure to support presence of a family member in the early phase of HD.
Key words: caregivers, chronic kidney disease, end-stage kidney disease, family, haemodialysis, phenomenology Accepted for publication: 29 January 2014
Authors: Susan Monaro, MN, B App Sc (Nursing), RN, Vascular Clinical Nurse Consultant & Clinical Lecturer, Sydney Nursing School, University of Sydney, Sydney and Level 3 West Cardiovascular Service, Concord Repatriation General Hospital, Concord; Glenn Stewart, PhD, BEd, RN, Renal Clinical Nurse Consultant, Level 4 North Renal Medicine, Concord Repatriation General Hospital, Concord; Janice Gullick, PhD, MA, RN, Senior Lecturer
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& Coordinator, Master of Emergency Nursing, Master of Intensive Care Nursing, Sydney Nursing School, University of Sydney, Sydney, NSW, Australia Correspondence: Susan Monaro, Level 3 West Cardiovascular Services, Concord Repatriation General Hospital, Hospital Road, Concord, NSW 20139, Australia. Telephone: +61 2 9767 7797. E-mail: [email protected]
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273, doi: 10.1111/jocn.12577
Original article
Introduction Chronic kidney disease (CKD) is a global problem resulting in a substantial burden of illness and premature death (White et al. 2008, Kidney Health Australia 2012). Globally, the population prevalence of CKD is more than 10% and exceeds 50% in certain high-risk populations (Eckardt et al. 2013). While access to dialysis is similar between Australia, North America and western Europe, macroeconomic factors create variation in access internationally (Caskey et al. 2011). As people approach end-stage kidney disease (ESKD) and possible dialysis, it essential that care planners address a range of reactions to diagnosis and therapy (Cukor et al. 2007). Although renal replacement therapy is the mainstay of ESKD management, the process of adapting to long-term haemodialysis (HD) is not well understood.
Background The functional challenges associated with ESKD may overwhelm patients and families (Francisco et al. 2012). People living with ESKD describe changes in self-concept, psychosocial well-being, sense of dignity and family roles. Fears include financial stressors, and impending dialysis and its potential impact on family life (Bayhakki & Hatthakit 2012). The restrictive and time-consuming nature of dialysis is exacerbated by strict schedules for fluid intake and diet (McCann & Boore 2000, Hagren et al. 2005, Harwood et al. 2005, Clarkson & Robinson 2010). The dialysis machine itself can represent both a lifeline and a shackle (Polaschek 2003, Sadala & Lorencßon 2006, Bayhakki & Hatthakit 2012). People receiving HD may experience frequent fatigue and a decline in functional capacity (Heiwe et al. 2003, Al-Arabi 2006, Lee et al. 2007, Krueger 2009). The disruption to life can lead to depression, uncertainty, grief and at times, hopelessness (Sadala & Lorencßon 2006, Kaba et al. 2007, Chan et al. 2008). Patients established on HD do, however, describe coping with restrictions through the love and support of family, through trust in God (Al-Arabi 2006, Clarkson & Robinson 2010) and by developing a new ways of managing personal autonomy and restrictions to time and space (Hagren et al. 2005, McCarley 2009). Negative consequences exist for the health and life quality of HD caregivers (Belasco & Sesso 2002, Alvarez-Ude et al. 2004) and caregivers in chronic illness generally (Hooley et al. 2005, Khalid & Kauser 2008, Gullick & Stainton 2012). While family may engage in care at home, they struggle for inclusion in HD treatment and © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
A ‘lost life’: coming to terms with haemodialysis
decision-making, feeling powerless and forgotten (Aasen et al. 2012). Patient–family dyads have been used broadly to describe the family-centred experience of acute and chronic illness (Kendall et al. 2009). These are particularly useful for illuminating the complexities of the illness experience, caregiver burden and the subsequent influence on relationship dynamics. They encourage the framing of families as partners in care-planning. More specifically, early home dialysis research using dyads and quantitative tools (Brackney 1979) established the significance of both marital relationship quality and the spouses’ adjustment to illness on successful adjustment of patients to therapy. More recent research has recommended the screening of dyads for relationship quality when determining suitability for home dialysis (Wise et al. 2010). An Indian patient/carer study employed quantitative measures of depression, marital adjustment and quality of life in CKD (Khaira et al. 2012). The authors described these couples as complex psychosocial dyads with significant interpersonal responses to the illness. Their experience was influenced greatly by extended family support. The above reports are, in the main, robust studies with clear aims and well-described theoretical frameworks. They represent research from a variety of cultures, and the resonance of common meanings is noted in a recent metasynthesis (Bayhakki & Hatthakit 2012). However, the focus of past research is people well established on HD. The focus for this study is the initiation of HD, a less understood phase of management. Given the disruption to life at this early stage, further understanding could, perhaps, enhance patient and family support and reduce subsequent negative impacts of therapy. The aim of this study therefore was to explore early experiences of close family members and people with ESKD commencing HD in a tertiary referral hospital.
Method Design This phenomenological study employed semi-structured interviews with patients and family to gain understanding of the early experience of HD. The inclusion of patients and family dyads gives insight into relationship dynamics and allows an exploration of similarities and differences in participant perceptions.
Mode of inquiry Existential philosopher, Martin Heidegger, conceptualised peoples’ ‘being’ as being-in-the-world, a shared human
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understanding determined by those things in our world that are important to us (Heidegger 1927/1926). Heideggerian phenomenology was chosen because chronic illness has emerged in nursing literature as a family experience that challenges previous ways of being-in-theworld. Phenomenology has the potential to assist with meaningful, patient- and family-centred healthcare planning. It has been used to explore conditions such as HIV, chronic obstructive pulmonary disease (COPD) and chronic heart failure (Gullickson 1993, Sloan & Pressler 2009, Gullick & Stainton 2012, Kennedy 2012). Phenomenological interpretation requires the researcher to go beyond the literal meaning of participants’ words to identify the ‘fore-structures’ (our prior understanding of the phenomena) and to interact intellectually with themed meanings emerging from the data (Mackey 2005). It also requires the researcher to accept and value these stories as the participants’ reality (Koch 1996).
Sample and setting Eleven patients within three months of HD commencement and five family caregivers were recruited from an inpatient dialysis unit in a tertiary referral hospital in Sydney, Australia. We consecutively recruited all participants who met selection criteria using a process of nonprobability, purposive sampling during an inpatient stay or while attending in-centre dialysis. Participants were identified by the renal case manager and were recruited by an interviewer during a hospital visit. The aetiology of ESKD was wide ranging. The median age of patient participants was 405 years and caregivers, 64 years. Participants had sufficient English to meet the requirements for informed consent and interview. Participant characteristics are described in Table 1.
Data collection Each participant was engaged in one conversational-style interview between June 2008–March 2010, within three months of initiating HD. All but one interview were conducted individually. One mother (carer) and daughter (patient) were interviewed together as time for interview was limited by the need for the carer to be present during dialysis. There are both advantages and disadvantages when considering whether to interview family dyads together. We aimed to interview patients and family carers separately to allow free expression of challenging experiences (Kendall et al. 2009). Thirteen interviews were conducted face-to-face within the renal unit and three by phone with speakerphone capacity.
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Interview duration ranged from 26–72 minutes. Interviews were collected by one of three authors (SM) and two experienced nurses with qualitative interview training. Interviews were digitally recorded and transcribed verbatim.
Data analysis Halling (2008) explains phenomenological analysis as a three-stage approach where researchers move back-andforth between experience, abstraction and reflection. The first stage examines participants’ narrative description of an experience: reading and rereading the interview transcriptions. The second stage identifies themes common to the phenomenon across narratives. In the early stages of analysis, researchers independently coded interview data. These initial themes were then brought together and reviewed for consensus. Halling’s third stage explores philosophical and universal expressions of humanness by exploring what it is about human nature and relationships that creates meaning for the person (Finlay 2009). Heidegger used Dilthey’s (2011) notion of the ‘hermeneutic circle’. This process requires the researchers to seek the ‘essence’ of the experience – a sense of shared, essential meaning that underpins the nature of being for the participants. Using this essence as the central point for interpretation, Heidegger identified a ‘backward and forward movement’ (1927/1996, p. 6) between individual participant quotations held against the person’s larger narrative, the stories of other participants and the researchers’ own prior understandings of the phenomenon. Dyad transcripts were examined together. Participant quotes that referred to a particular experience were examined for differing or corroborating perspectives, and the differing weight attributed to an experience was considered in our examination of dyad transcripts. For the researchers, testing these emerging ideas through a process of reading and rereading, writing and thinking allowed development of a rich description and interpretation.
Rigour To enhance the rigour of this study, we used the quality framework of De Witt and Ploeg (2006) drawing attention to the unique characteristics of interpretive phenomenology. These include a balanced integration between the careful preparation of transcripts, the reflective nature of participants’ experiences and the interweaving between philosophical interpretation and the participants’ voice. Resonance is demonstrated through compelling examples of a changed © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
Original article
A ‘lost life’: coming to terms with haemodialysis
Table 1 Study participants’ information Patient
Carer
Background and clinical features
Harry – declined to be interviewed Mary
Janelle, 59 years wife
73-year-old male with end-stage kidney disease (ESKD) secondary to hypertension. Failed peritoneal dialysis (PD). Initiation of haemodialysis (HD) via temporary HD catheter until arteriovenous fistula (AVF) matures 80-year-old female with ESRF secondary to analgesic nephropathy. Failed PD. Initiated HD via temporary HD catheter as patient resistant to AVF 67-year-old male with ESRF secondary to diabetes mellitus (DM) and renal artery stenosis (RAS). Failed PD. Initiated HD via temporary HD catheter after failed AVF 30-year-old female with ESRF secondary to glomerulonephritis (GN). Failed PD. HD initiated via temporary HD catheter as unable to tolerate needles 84-year-old female with ESRF secondary to hypertension. Failed PD despite multiple catheters. Initiated HD via AVF
Peter
Denise Janice
Frank Sharon
Garry Bob Vanessa Sylvia William
Annette, 52 years daughter Carla, 63 years wife
Kerry, 60 years mother Husband – unable to be interviewed due to recent stroke No carer Husband – not interviewed due to illness Partner – not interviewed Wife – not interviewed No carer Paul, 86 years husband No carer
61-year-old male with ESRF secondary to focal sclerosing glomerulosclerosis (FSGN) initiated HD via temporary HD catheter as AVF not created 58-year-old female with ESRF secondary to lithium toxicity. Initiated HD via temporary HD catheter as AVF not created 33-year-old male with ESRF secondary to immunoglobulin A (IgA) nephropathy. Initiated HD via AVF 77-year-old male with acute chronic kidney disease (CKD) secondary to IgA nephropathy. Initiated HD via temporary HD catheter 53-year-old female with ESRF secondary to FSGN. Initiated HD via AVF with multiple cannulation problems, forearm steal syndrome and fistula stenosis 78-year-old female CKD secondary to polycystic kidney disease. Initiated HD via temporary HD catheter as thigh loop created developed complications 66-year-old male CKD secondary to HTN. Initiated HD via femoral temporary HD catheter after multiple attempts at establishing access
life-world and expressions of the numerous limitations, fears and challenges participants faced. These examples have highlighted important areas for actualisation, possibilities for practice change. To enhance objectivity, the interviewers had no significant clinical care association with participants. In preparation, three clinical nurse consultants and one clinical nurse specialist completed a research training programme (Gullick & West 2012) including instruction in qualitative interviewing. Participants were reassured that, in narrating their personal journey, there were no right or wrong answers (openness). The incorporation of an interview guide facilitated a common approach to questioning (see Table 2). The researchers returned frequently to full transcripts to check and challenge their perceptions about quotations. Researcher reflexivity involved acknowledging preconceived attitudes and beliefs. These included our consideration that people may have been told about their declining kidney function but either forgot, or interpreted these discussions in a way that was more acceptable to them. We believed that dialysis was frequently commenced too late because of delayed decision-making by either the patient or physician © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
and that this delay increased the potential for problems, including additional distress and access insufficiency.
Ethical considerations Ethical approval was obtained. Participants were given an information statement and provided written consent.
Findings The essence of the experience of commencing HD for our participants was a profound sense of loss. This was expressed through their initial feelings of shock and grief, loss of sense of self, spontaneity, freedom and well-being, and loss of family and community roles.
Shock and grief Participants described shock and grief at their loss of kidney function and their need for life-saving therapy. Most participants were aware of their CKD. However, very few
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S Monaro et al. Table 2 Interview guide Interview guide –patient participants Can you talk to me about what life was like for you before you developed kidney problems? What things in your life changed after you developed kidney problems? How has dialysis treatment changed things since then? (good and bad things) What are some of the things you need help with while you are having dialysis? What are some of the things that have stood out in your mind about your hospital visits? What were the best things about your hospital visits? What were the hardest things about your illness and hospital visits? How do you think your family has experienced your illness and dialysis? Interview guide – family member Can you talk to me about what life was like for you before your family member developed kidney problems? What things in your life changed after your family member developed kidney problems? How has dialysis treatment changed things since then? (good and bad things) What are some of the things they need help with while on dialysis? What are some of the things that have stood out in your mind about their hospital visits? What were the best things from your perspective as a carer, about their hospital visits? What were the hardest things, from your perspective as a carer, about their illness and dialysis? What do you think is the most important thing that a hospital can provide for family carers?
It was the fear of the unknown. I thought I was going to be an invalid for the rest of my life and. . . I was saying “No Mum, I’m going to die”. . . I was thinking about leaving my husband and leaving my son.
Frank had discussed the possibility of HD with his specialist, who suggested a likely time frame that did not match the eventual reality. ‘We drew a graph and he said I had six years before the kidneys did pack in but. . . it only lasted two or three months.’ The participants themselves tended to be unrealistic about the timing of impending dialysis making mental preparation even more difficult. As a result, there appeared to be limited opportunity for timely introduction of predialysis education or the establishment of permanent dialysis access. This left participants feeling ambushed by their circumstances. Bob and his family were ambivalent about starting dialysis, but a heart attack forced him to confront dialysis as a permanent management strategy. His experience of emotional shock was heightened by the multiple body systems involved at the time: I started having angina attacks. . . The arteries were blocked. . . he had the system put in for dialysis and put stents into the (coronary) arteries, I had pneumonia. . . they put the tube down the throat. . . It has been a really dramatic experience.
The shock resulting from the sudden need for dialysis, and confronting the possibility of death without dialysis, turned peoples’ world upside down. Caregiver Kerry commented: I was talking to a lady. . . she’s quite traumatised, She said “One
participants were able to recall engaging in discussions about dialysis as a likely treatment option in the near future. Sylvia was shocked by what she perceived as unexpected invasive medical management. She explained, ‘I was going to a doctor for five years. . . he never told me a word about this.’ Carer, Janelle, also related a lack of understanding of husband Joe’s kidney disorder: Every time. . .they say “Joe, your kidney’s weak”, that’s as far as they go. . . six months ago his kidneys collapsed completely and he had to start dialysis. Never been prescribed any tablet. . .injection
day your life’s normal and the next day everything’s different. Your husband’s in a life-threatening situation and it’s like pressing a switch from night to day and the world changes”.
Some participants had limited recollection of medical or lifestyle management to precede dialysis, and some could not recall any discussion about renal replacement therapy. This raises an important question about when to implement appropriate interventions, how to create opportunities to reinforce the gravity of the situation and how to assist with the physical and emotional preparation of the deteriorating patient.
or anything.
Sharon had no recollection of dialysis discussions until she went to her general practitioner on an unrelated matter and found that dialysis was imminent. When forced to confront the immediacy of dialysis, Sharon was overwhelmed and fearful of lifelong incapacity or early death:
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Loss of sense of self Participants described a loss of personal autonomy, and this loss did not sit well with their previous sense of self. It was not just the loss of self-sufficiency, but also the loss of ability to contribute to others and the resulting burden on family.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
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Mary, an older widow dependent on her busy daughter, explained, ‘You’ve lost your independence. . . you depend on other people all the time’. Vanessa lived with her brother who provided her with no practical help. Asking for assistance from people other than family placed dependence in a different dimension for Vanessa, ‘I’ve got to now ask for help from my friends. . . I’m finding it difficult to do’. For some participants, their embodied view of themselves as young and physically competent was lost; they were no longer able to perform in previously known ways. They described a loss of ability to meet their own basic needs and, consequently, felt helpless and vulnerable. For some male participants, their gendered construct of identity was severely challenged, and in Peter’s case, this led him to feelings of worthlessness: A lot of blokes would suffer depression. . . like I felt. . . Feeling useless, that they’re no good for anybody. . . I’ve always been independent. . . felt that it was a man’s place to support his family. Ever since I’ve been sick I’ve been relying on the family to keep me going. . . F—ng useless! I should have died [crying] and it would have been better for everybody ‘cause it’s so hard on everyone now.
Loss of spontaneity and personal freedom There was a sense of containment or even imprisonment associated with the initial HD period. HD only restricts movement during the actual treatment, but for some, the subsequent fatigue and loss of confidence stretched the impact beyond the HD session. Mary explained, ‘[Dialysis] restricts me. . . I just can’t get out anymore’. Frank’s family took dialysis ‘in their stride’, but for Frank, the loss of possibilities was a source of sadness. ‘We can’t get up on a weekend and shoot through to the country. . . you’re bound to go back to hospital. . .’. Bob reconsidered his ability to drive as his health worsened. ‘Even going down the road. . . I felt I wasn’t capable. I’ve been driving for 50 years and it’s a big thing. You lose that feeling of. . . freedom’. Many participants worried about the future limitations dialysis might place on holidays. Kerry (mother of Denise) explained ‘When [Denise] was on PD we used to travel. . . but with haemodialysis you can’t’. Sharon noticed the lack of ability to ‘escape’ when physically ‘tied’ to the HD machine ‘My sister will go off in the car and I’ll think to myself, “She can go anywhere!”. . .’. These concerns were genuine because arranging holidays for people receiving HD can be difficult due to the limited availability of holiday placements in Australia. Holidays must be planned well in advance and depend on the discretion of the receiving dialysis unit. Kerry explained: © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
A ‘lost life’: coming to terms with haemodialysis [Other dialysis units] won’t give you a set time. . . One person. . . had a wedding in Queensland. . . they’d be trying for nearly five months to get a date confirmed. . . and they couldn’t get it.
HD may impose significant limitations on work and retirement plans. For Vanessa who needed to be financially independent, dialysis imposed unanticipated financial stress: I’m not working. . . I get part superannuation and part disability. . . I have assets which bring me over the threshold. . . I have liabilities like mortgages, investments so I’m going to have to re-look at my finances. . . I don’t have anybody else to rely on.
Changed body feelings Commencement of HD resulted in both positive and negative sensations within a changed body. Some participants reported their body feeling better in its daily function. Sharon, who was initially terrified of dialysis, fearing disability and death, found dialysis improved feelings of wellness, ‘My health is so much better. . . I feel good. I’m not sleeping in the afternoon, I’m holding a decent conversation and I’m eating well’. Peter noted, ‘. . .since I’ve had dialysis I’ve felt much better. You can live. It got rid of all the fluid. . . the sick feeling’. This contrasted with Frank’s experience; his body felt depleted. ‘The dialysis drains you right out. . . I was worrying about my blood pressure. . . I can feel it, you get headaches. . .’. Sylvia experienced fatigue, ‘I go home and sit in my armchair and go to sleep’. This variation in physical effects is important for clinicians providing predialysis education.
Reframing family roles Our participants described the caring role as unremitting and requiring intense vigilance. It was seen as crucial that people receiving HD adapt to significant lifestyle changes, including the need to accept and receive care and acceptance of the resulting change in relationship dynamics. Many people receiving HD were buffered against the perceived burden of their care by the strong sense of reciprocity, constancy and love they received from spousal carers. Carla framed caring as something she chose to do and consciously conceived it as positive, ‘If you’re going to take care of your husband. . . I think you have to want to do it. . . this is a thing I’ve chosen to do and I will do so as long as Peter’s with us.’ There were fewer feelings of reciprocity among nonspousal carers; consequently, a greater burden was perceived. The quality of pre-existing relationships appeared to
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influence the response to caring. Annette, daughter, struggled with feelings of anger, guilt and resentment: I feel guilty ‘cause I was Dad’s girl. . .I would have walked over hot coals for my father – he expected nothing. . . but Mum expects everything. . . My mother’s always been very good at emotional blackmail. . . she’s just transferred her dependency from Dad to me. . . The [Aged Care Assessment Team] said that she was highdependency. . . She said, “If you put me in a home I’ll starve myself to death”.
The demands of dialysis seemed to polarise relationships with nonspousal relatives and friends so they were either supportive or distanced themselves. Garry was disappointed and shocked at his own family’s lack of interest in his health: ‘My partner’s family has been. . . 100% more supportive than my own. . . I’m shocked. . . either they’re finding it hard to deal with or they don’t want to deal with it.’ When participants felt this way, their confidence in close relationships was undermined. Two participants were concerned that their relationships would not withstand the illness and its consequences. Sharon worried her relationship would not survive both her diagnosis and dialysis: I was worried. . . we’ve been married 28 years. . . I thought it might be too much for him and he might leave me. . . if he did that, I’d just be devastated. . . but he sort of got into it.
Similarly, Garry lacked confidence in his relationship with his pregnant partner who was already giving so much of herself to the care of their child: ‘. . .it’s physically and emotionally exhausting for her. She’s been good to me and I really appreciate it but there’s only so much someone can go through. . . It’s been a strain on our relationship’. Carer Janet had always been confident in her spousal relationship but felt her husband was concerned about the loss of intimacy. She had to reframe the importance of sex in their relationship: I’m way younger than him. . .. sex. . . that’s not everything. We had
Loss of social connectedness Many participants felt the loss of social connectedness. Janice pointed out that these losses encompassed both work and leisure. ‘My friends keep saying ‘Come back [to Bingo]. . .’ and I’d say “I’m frightened!”’. The loss of social connection affected both patients and carers. Caregiver Kerry explained, ‘I did a lot more active things. . . we were involved with more groups. . . and I’m not anymore – not involved with anything really’. It was clear that the dialysis experience could be all-consuming. The time involved with HD and the fatigue that followed challenged peoples’ capacity to plan and maintain previous social activities. Vanessa’s interview clearly illustrated a loss of spontaneity and connectedness: [Dialysis] takes all day and then. . . I couldn’t be bothered. . . So I don’t ring people. . . I just want to stay home. . . [but] I can’t neglect my friends. . . they have been very supportive. . . When I’m on dialysis. . . that’s when I’ve got the time to ring. I’ve got to plan when I see somebody. . . make sure it doesn’t interfere with dialysis.
Paul, Sylvia’s carer, accepted the loss of connectedness, social status and broader community contribution after HD commencement. He prioritised Sylvia as his most important commitment, reflecting: I was president of the RSL social club. . . I gave it away ‘cause she’s not able to go. . . Every six weeks we used to have a trip. . . but she just couldn’t continue. . . I couldn’t do two things, she comes first.
So overwhelming was the impact of dialysis that several participants grieved for a ‘lost life’. Sylvia explained, ‘I’ve got no life. I’ve got to come here three times a week’. Garry pointed out ‘I’m only 33. . . I didn’t have any worries. . . It was a good life but now. . . so much has changed. . . you really want your life back’. Similarly, Vanessa commented ‘It’s like a loss of a life. . . the life you knew is no longer like that. So it’s a grieving process’.
our times. . . I keep saying “Who cares?. . . we have six beautiful children”. He said “I know you say that because you don’t want to hurt me” and I can see the guilt in him.
For others, the issue of living organ donation further complicated family dynamics. Some participants were reluctant to ask family to consider organ donation. Others were particular about whom they would approach. For example, Frank would accept a kidney from his wife but not his adult child. Garry’s family were initially willing to consider donation but had avoided further discussions. Vanessa’s brother did not want to be involved at all, and Sharon was unwilling to accept a kidney from family.
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Discussion Heideggerian hermeneutic phenomenology allowed an understanding of the complexity of the early HD experience, situated within the everyday concerns of people. The essence of the experience, a lost life, emerged from the supporting themes which were well developed and richly described by participants. The inclusion of family strengthened the data revealing multiple perspectives of loss and confirming ESKD as a family experience. This sense of a lost life sits in contrast to what some might expect as relief associated with life-saving treatment. The losses were © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
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multifactorial: physical, emotional and social. This notion of loss is also reflected in quantitative measures CKD (Chan et al. 2009). While there is a vast body of research on dialysis outcomes, our findings are novel in their focus on the early dialysis experience and the impact on family members. Only one other study was found to focus on dialysis commencement (Lai et al. 2012) but did not include family perspectives. This Singaporean study that recruited participants of Chinese and Malay background also noted ‘shock’ and a ‘loss of purpose in life’ and participants perceived themselves as a burden to caregivers. It was clear that decisions regarding dialysis required careful consideration and collaboration between patients, close family and clinicians. However, a recent meta-synthesis analysing patient and family decision-making reported a lack of choice about CKD treatment options (Morton et al. 2010). This was attributed to contraindications, physician preference and a lack of information about options. Resource constraints created further barriers to treatment choice determining issues like hospital vs. home dialysis. In our sample, the rapidity of predialysis decline was also a major factor. It appears that for people choosing dialysis over conservative care, successful transition depends on their willingness to consider all treatment options, their participation in individualised predialysis education and counselling, the proactive creation of vascular access and timely dialysis initiation (Iles-Smith 2005, Gutierrez Vilaplano et al. 2009, Davison 2011). People with ESKD and their families require considerable preparation for HD. Our findings may assist the multidisciplinary team to understand the emotional and physical challenges arising from therapy that is invasive, restrictive and painful. Often the diverse needs of people and families experiencing HD exceed the capacity and scope of practice of the renal team, particularly the HD nurses. This underlines the benefits of interdisciplinary and social input (Dermody & Bennett 2008), known to benefit people living with long-term illness (National Heart Foundation 2010, Harris et al. 2011). The loss of spontaneity and freedom in our findings is similar to experiences of participants with COPD on home oxygen who are socially isolated and ‘tied’ to their machine (Ring & Danielson 1997, Gullick & Stainton 2008) A healthy social life has been identified as an essential feature of adaptation to HD in a meta-synthesis of qualitative HD research (Bayhakki & Hatthakit 2012). A more balanced life is possible for a range of chronic illnesses where alter© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
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native models of health care create patient-centred approaches (Jeon et al. 2010). Our participants were, however, new to the HD experience, were still on in-centre dialysis and had yet to re-establish their social world. Possible areas for practice improvement include more proactive facilitation of home dialysis and addressing the lag in dialysis commencement that contributes to social losses during deteriorating health. Those patient participants who did not identify strong family support appeared to have greater difficulty coping with the demands of dialysis. In a robust study of the effects of social support for dialysis patients, a perceived discrepancy between expected and received social support was associated with increased mortality (Thong et al. 2007). This resonates with findings for a range of chronic illnesses (Penninx et al. 1997). Providing care and support for people receiving dialysis is demanding and stressful for families. Many consider CKD a ‘family disease’ because of the impacts which extend far beyond the individual receiving treatment (Clarkson & Robinson 2010). Long-term management may mean families undertake a range of complex activities such as active facilitation of home-based HD. Families and friends often assist with activities of daily living and transport. This level of involvement places considerable pressure on personal relationships and may incur feelings of anxiety, depression and isolation from other relatives and friends (Tong et al. 2008, Parlevliet et al. 2012). In addition, our younger caregivers appeared to experience more caregiver burden due to a decreased sense of reciprocity. These findings are similar for younger, nonspousal caregivers in COPD (Gullick & Stainton 2012). The enormous losses expressed by our participants signal a need for increased psychological support during this initial phase of dialysis to facilitate improved coping, particularly where family support networks are not strong. Formal patient and carer support networks were not visible to our participants, and several suggested the availability of such support would be beneficial, both before and after treatment initiation. Support networks could allow expression of emotion through conversation or writing: activities reported to decrease stress and anxiety in chronic illness, restoring a degree of balance and normality (de Ridder et al. 2008, McCarley 2009). Some patients and caregivers expressed a mutual need for family presence during the early HD period, and this is known to create a perception of immediate support (Ziegert & Fridlund 2010). This has important implications for dialysis unit design and culture, including issues of available space and staff receptiveness.
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The essence of a lost life requires a temporal understanding of the early HD experience. Heidegger’s temporality is not merely a single timeline of past, present and future, but multiple dimensions of experience that we reach out towards and see ourselves within (Richardson 2012). Our sense of past is how we see our ‘self’’ already being. That self is made visible through emotions, and it is from our sense of past that people give meaning to events. Our participants’ new life with HD appeared to challenge their past self as a free, self-determining being. Our participants’ future may be framed as the ‘who’ that a person is trying to be as they reach towards their own potentiality of being (Heidegger 1927/1996), ‘stretching all the way out to my death’ (Richardson 2012, p. 183). Future is envisaged through Heidegger’s notion of ‘care’ (1927/1996, p. 249). ‘Care’ encompasses the personal concerns that shape participants’ projection for future possibilities. In his analysis of Heidegger’s philosophy of freedom, Lee Nichols (2009, p. 74) explains that we can let our relations with our world dictate who we are, or it can be acknowledged that I, as a being who can question the meaning of my own existence, will always have possibilities and it is I who will determine my existence. Our participants’ narratives about the early phase of HD and their communication of a lost life actually portrayed a sense of lost future. People appeared so overwhelmed by the enormity of change that they were not yet ready to reframe their existence by grasping alternative possibilities.
Limitations This was a single-centre study. Due to the semiotic nature of hermeneutic analysis, we excluded people needing an interpreter because shared understanding is not guaranteed across culture and language. This meant we did not explore the experience of people who were non-English speaking. We acknowledge the importance of culture on experience, and while our setting may share similarities with other western institutions, findings may not be fully transferrable to other cultures. The median age of our patient participants is much younger than that reported in Australian and New Zealand statistics (405 vs. 607 years) (McDonald & Hurst 2011), and so their experiences may differ from that of older people. Our study could be strengthened by a larger sample of carers, although our themes for carer experience were rich and well developed. While all our participants were new to HD, some had previously received peritoneal dialysis, and we acknowledge this may have changed their experience.
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Conclusion It appears that people may embark upon HD mentally and physically underprepared. A greater focus on preparation for the possibility of dialysis and frameworks of care that support adjustment to this new way of life are of vital importance. Family presence during HD, and support groups for patients and families, may assist with transferring some of the load from the healthcare system to a more robust social system.
Relevance for clinical practice Chronic kidney disease management requires a comprehensive and patient-centred model of care. People receiving HD could benefit from family presence during predialysis education and facilitation of family presence in the HD unit in the early phase of treatment. Patient and carer support groups, whether face-to-face or online, could enhance social connection. The diverse and complex needs of HD patients and families are more likely to be addressed through interdisciplinary and social input.
Acknowledgements This study is a joint project of the Sydney Nursing School, University of Sydney, and the Concord Repatriation General Hospital, Sydney. It is the culmination of research output from one research cluster within the Concord Hospital Clinical Nurse Consultant Research Skills Development Project. We acknowledge the practical and academic support of Associate Professor Sandra West, Sydney Nursing School, University of Sydney and of Karina So and Mary Dunleavy, Concord Repatriation General Hospital for their assistance with data collection. This study was funded by a grant from the Sydney Nursing School, University of Sydney, and a CRGH TAB (Totaliser Agency Board) Nursing Scholarship. We acknowledge the important contribution of the patients and carers who so generously shared their stories.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethi cal_1author.html), as follows: (1) substantial contributions to conception and design ,acquisition of data or analysis and interpretation of data; (2) drafting the article or revising it critically for important intellectual content;, and (3) final approval of the version to be published.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
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Original article
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Original article
A ‘lost life’: coming to terms with haemodialysis
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© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
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A ‘lost life’: coming to terms with haemodialysis Susan Monaro, Glenn Stewart and Janice Gullick
Aims and objectives. To describe the essence of the lived experience of patients and families in the early phase of long-term haemodialysis therapy. Background. Past qualitative research has taken a long-term view describing established haemodialysis therapy as it impacts on physical limitations and changes in self-concept, psychosocial well-being and sense of dignity with subsequent consequences for family roles and financial status. Design. This study used the qualitative approach of Heideggerian phenomenology. Methods. Eleven patients with end-stage kidney disease who had recently initiated haemodialysis and five family carers engaged in semi-structured interviews. These were recorded and transcribed verbatim and analysed using an hermeneutic framework. Results. The essence of the early dialysis experience was a ‘lost life’, and participants were overwhelmed by shock and grief. This appeared to result from a lack of mental and physical preparation for dialysis as a long-term management strategy. A loss of sense of self, loss of spontaneity and personal freedom and loss of social connectedness challenged the participants’ ability to contribute to family and community. Changed body sensations ranged from improved wellness to a sense of depletion and fatigue. Family caregivers found the caring role was unremitting and required intense vigilance. Conclusions. Patients and family members in the early phase of dialysis may have difficulty perceiving a positive future. Relevance to clinical practice. A greater focus on preparation for the possibility of dialysis and frameworks of care that support adjustment to this new way of life are of vital importance. Family presence during haemodialysis and support groups for patients and family should be actively facilitated.
What does this paper contribute to the wider global clinical community?
• Acknowledgement of the multi• •
ple losses experienced by people initiating HD. Consideration of patient and family supports groups and/or clinical psychology. Infrastructure to support presence of a family member in the early phase of HD.
Key words: caregivers, chronic kidney disease, end-stage kidney disease, family, haemodialysis, phenomenology Accepted for publication: 29 January 2014
Authors: Susan Monaro, MN, B App Sc (Nursing), RN, Vascular Clinical Nurse Consultant & Clinical Lecturer, Sydney Nursing School, University of Sydney, Sydney and Level 3 West Cardiovascular Service, Concord Repatriation General Hospital, Concord; Glenn Stewart, PhD, BEd, RN, Renal Clinical Nurse Consultant, Level 4 North Renal Medicine, Concord Repatriation General Hospital, Concord; Janice Gullick, PhD, MA, RN, Senior Lecturer
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& Coordinator, Master of Emergency Nursing, Master of Intensive Care Nursing, Sydney Nursing School, University of Sydney, Sydney, NSW, Australia Correspondence: Susan Monaro, Level 3 West Cardiovascular Services, Concord Repatriation General Hospital, Hospital Road, Concord, NSW 20139, Australia. Telephone: +61 2 9767 7797. E-mail: [email protected]
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273, doi: 10.1111/jocn.12577
Original article
Introduction Chronic kidney disease (CKD) is a global problem resulting in a substantial burden of illness and premature death (White et al. 2008, Kidney Health Australia 2012). Globally, the population prevalence of CKD is more than 10% and exceeds 50% in certain high-risk populations (Eckardt et al. 2013). While access to dialysis is similar between Australia, North America and western Europe, macroeconomic factors create variation in access internationally (Caskey et al. 2011). As people approach end-stage kidney disease (ESKD) and possible dialysis, it essential that care planners address a range of reactions to diagnosis and therapy (Cukor et al. 2007). Although renal replacement therapy is the mainstay of ESKD management, the process of adapting to long-term haemodialysis (HD) is not well understood.
Background The functional challenges associated with ESKD may overwhelm patients and families (Francisco et al. 2012). People living with ESKD describe changes in self-concept, psychosocial well-being, sense of dignity and family roles. Fears include financial stressors, and impending dialysis and its potential impact on family life (Bayhakki & Hatthakit 2012). The restrictive and time-consuming nature of dialysis is exacerbated by strict schedules for fluid intake and diet (McCann & Boore 2000, Hagren et al. 2005, Harwood et al. 2005, Clarkson & Robinson 2010). The dialysis machine itself can represent both a lifeline and a shackle (Polaschek 2003, Sadala & Lorencßon 2006, Bayhakki & Hatthakit 2012). People receiving HD may experience frequent fatigue and a decline in functional capacity (Heiwe et al. 2003, Al-Arabi 2006, Lee et al. 2007, Krueger 2009). The disruption to life can lead to depression, uncertainty, grief and at times, hopelessness (Sadala & Lorencßon 2006, Kaba et al. 2007, Chan et al. 2008). Patients established on HD do, however, describe coping with restrictions through the love and support of family, through trust in God (Al-Arabi 2006, Clarkson & Robinson 2010) and by developing a new ways of managing personal autonomy and restrictions to time and space (Hagren et al. 2005, McCarley 2009). Negative consequences exist for the health and life quality of HD caregivers (Belasco & Sesso 2002, Alvarez-Ude et al. 2004) and caregivers in chronic illness generally (Hooley et al. 2005, Khalid & Kauser 2008, Gullick & Stainton 2012). While family may engage in care at home, they struggle for inclusion in HD treatment and © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
A ‘lost life’: coming to terms with haemodialysis
decision-making, feeling powerless and forgotten (Aasen et al. 2012). Patient–family dyads have been used broadly to describe the family-centred experience of acute and chronic illness (Kendall et al. 2009). These are particularly useful for illuminating the complexities of the illness experience, caregiver burden and the subsequent influence on relationship dynamics. They encourage the framing of families as partners in care-planning. More specifically, early home dialysis research using dyads and quantitative tools (Brackney 1979) established the significance of both marital relationship quality and the spouses’ adjustment to illness on successful adjustment of patients to therapy. More recent research has recommended the screening of dyads for relationship quality when determining suitability for home dialysis (Wise et al. 2010). An Indian patient/carer study employed quantitative measures of depression, marital adjustment and quality of life in CKD (Khaira et al. 2012). The authors described these couples as complex psychosocial dyads with significant interpersonal responses to the illness. Their experience was influenced greatly by extended family support. The above reports are, in the main, robust studies with clear aims and well-described theoretical frameworks. They represent research from a variety of cultures, and the resonance of common meanings is noted in a recent metasynthesis (Bayhakki & Hatthakit 2012). However, the focus of past research is people well established on HD. The focus for this study is the initiation of HD, a less understood phase of management. Given the disruption to life at this early stage, further understanding could, perhaps, enhance patient and family support and reduce subsequent negative impacts of therapy. The aim of this study therefore was to explore early experiences of close family members and people with ESKD commencing HD in a tertiary referral hospital.
Method Design This phenomenological study employed semi-structured interviews with patients and family to gain understanding of the early experience of HD. The inclusion of patients and family dyads gives insight into relationship dynamics and allows an exploration of similarities and differences in participant perceptions.
Mode of inquiry Existential philosopher, Martin Heidegger, conceptualised peoples’ ‘being’ as being-in-the-world, a shared human
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understanding determined by those things in our world that are important to us (Heidegger 1927/1926). Heideggerian phenomenology was chosen because chronic illness has emerged in nursing literature as a family experience that challenges previous ways of being-in-theworld. Phenomenology has the potential to assist with meaningful, patient- and family-centred healthcare planning. It has been used to explore conditions such as HIV, chronic obstructive pulmonary disease (COPD) and chronic heart failure (Gullickson 1993, Sloan & Pressler 2009, Gullick & Stainton 2012, Kennedy 2012). Phenomenological interpretation requires the researcher to go beyond the literal meaning of participants’ words to identify the ‘fore-structures’ (our prior understanding of the phenomena) and to interact intellectually with themed meanings emerging from the data (Mackey 2005). It also requires the researcher to accept and value these stories as the participants’ reality (Koch 1996).
Sample and setting Eleven patients within three months of HD commencement and five family caregivers were recruited from an inpatient dialysis unit in a tertiary referral hospital in Sydney, Australia. We consecutively recruited all participants who met selection criteria using a process of nonprobability, purposive sampling during an inpatient stay or while attending in-centre dialysis. Participants were identified by the renal case manager and were recruited by an interviewer during a hospital visit. The aetiology of ESKD was wide ranging. The median age of patient participants was 405 years and caregivers, 64 years. Participants had sufficient English to meet the requirements for informed consent and interview. Participant characteristics are described in Table 1.
Data collection Each participant was engaged in one conversational-style interview between June 2008–March 2010, within three months of initiating HD. All but one interview were conducted individually. One mother (carer) and daughter (patient) were interviewed together as time for interview was limited by the need for the carer to be present during dialysis. There are both advantages and disadvantages when considering whether to interview family dyads together. We aimed to interview patients and family carers separately to allow free expression of challenging experiences (Kendall et al. 2009). Thirteen interviews were conducted face-to-face within the renal unit and three by phone with speakerphone capacity.
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Interview duration ranged from 26–72 minutes. Interviews were collected by one of three authors (SM) and two experienced nurses with qualitative interview training. Interviews were digitally recorded and transcribed verbatim.
Data analysis Halling (2008) explains phenomenological analysis as a three-stage approach where researchers move back-andforth between experience, abstraction and reflection. The first stage examines participants’ narrative description of an experience: reading and rereading the interview transcriptions. The second stage identifies themes common to the phenomenon across narratives. In the early stages of analysis, researchers independently coded interview data. These initial themes were then brought together and reviewed for consensus. Halling’s third stage explores philosophical and universal expressions of humanness by exploring what it is about human nature and relationships that creates meaning for the person (Finlay 2009). Heidegger used Dilthey’s (2011) notion of the ‘hermeneutic circle’. This process requires the researchers to seek the ‘essence’ of the experience – a sense of shared, essential meaning that underpins the nature of being for the participants. Using this essence as the central point for interpretation, Heidegger identified a ‘backward and forward movement’ (1927/1996, p. 6) between individual participant quotations held against the person’s larger narrative, the stories of other participants and the researchers’ own prior understandings of the phenomenon. Dyad transcripts were examined together. Participant quotes that referred to a particular experience were examined for differing or corroborating perspectives, and the differing weight attributed to an experience was considered in our examination of dyad transcripts. For the researchers, testing these emerging ideas through a process of reading and rereading, writing and thinking allowed development of a rich description and interpretation.
Rigour To enhance the rigour of this study, we used the quality framework of De Witt and Ploeg (2006) drawing attention to the unique characteristics of interpretive phenomenology. These include a balanced integration between the careful preparation of transcripts, the reflective nature of participants’ experiences and the interweaving between philosophical interpretation and the participants’ voice. Resonance is demonstrated through compelling examples of a changed © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
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Table 1 Study participants’ information Patient
Carer
Background and clinical features
Harry – declined to be interviewed Mary
Janelle, 59 years wife
73-year-old male with end-stage kidney disease (ESKD) secondary to hypertension. Failed peritoneal dialysis (PD). Initiation of haemodialysis (HD) via temporary HD catheter until arteriovenous fistula (AVF) matures 80-year-old female with ESRF secondary to analgesic nephropathy. Failed PD. Initiated HD via temporary HD catheter as patient resistant to AVF 67-year-old male with ESRF secondary to diabetes mellitus (DM) and renal artery stenosis (RAS). Failed PD. Initiated HD via temporary HD catheter after failed AVF 30-year-old female with ESRF secondary to glomerulonephritis (GN). Failed PD. HD initiated via temporary HD catheter as unable to tolerate needles 84-year-old female with ESRF secondary to hypertension. Failed PD despite multiple catheters. Initiated HD via AVF
Peter
Denise Janice
Frank Sharon
Garry Bob Vanessa Sylvia William
Annette, 52 years daughter Carla, 63 years wife
Kerry, 60 years mother Husband – unable to be interviewed due to recent stroke No carer Husband – not interviewed due to illness Partner – not interviewed Wife – not interviewed No carer Paul, 86 years husband No carer
61-year-old male with ESRF secondary to focal sclerosing glomerulosclerosis (FSGN) initiated HD via temporary HD catheter as AVF not created 58-year-old female with ESRF secondary to lithium toxicity. Initiated HD via temporary HD catheter as AVF not created 33-year-old male with ESRF secondary to immunoglobulin A (IgA) nephropathy. Initiated HD via AVF 77-year-old male with acute chronic kidney disease (CKD) secondary to IgA nephropathy. Initiated HD via temporary HD catheter 53-year-old female with ESRF secondary to FSGN. Initiated HD via AVF with multiple cannulation problems, forearm steal syndrome and fistula stenosis 78-year-old female CKD secondary to polycystic kidney disease. Initiated HD via temporary HD catheter as thigh loop created developed complications 66-year-old male CKD secondary to HTN. Initiated HD via femoral temporary HD catheter after multiple attempts at establishing access
life-world and expressions of the numerous limitations, fears and challenges participants faced. These examples have highlighted important areas for actualisation, possibilities for practice change. To enhance objectivity, the interviewers had no significant clinical care association with participants. In preparation, three clinical nurse consultants and one clinical nurse specialist completed a research training programme (Gullick & West 2012) including instruction in qualitative interviewing. Participants were reassured that, in narrating their personal journey, there were no right or wrong answers (openness). The incorporation of an interview guide facilitated a common approach to questioning (see Table 2). The researchers returned frequently to full transcripts to check and challenge their perceptions about quotations. Researcher reflexivity involved acknowledging preconceived attitudes and beliefs. These included our consideration that people may have been told about their declining kidney function but either forgot, or interpreted these discussions in a way that was more acceptable to them. We believed that dialysis was frequently commenced too late because of delayed decision-making by either the patient or physician © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
and that this delay increased the potential for problems, including additional distress and access insufficiency.
Ethical considerations Ethical approval was obtained. Participants were given an information statement and provided written consent.
Findings The essence of the experience of commencing HD for our participants was a profound sense of loss. This was expressed through their initial feelings of shock and grief, loss of sense of self, spontaneity, freedom and well-being, and loss of family and community roles.
Shock and grief Participants described shock and grief at their loss of kidney function and their need for life-saving therapy. Most participants were aware of their CKD. However, very few
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S Monaro et al. Table 2 Interview guide Interview guide –patient participants Can you talk to me about what life was like for you before you developed kidney problems? What things in your life changed after you developed kidney problems? How has dialysis treatment changed things since then? (good and bad things) What are some of the things you need help with while you are having dialysis? What are some of the things that have stood out in your mind about your hospital visits? What were the best things about your hospital visits? What were the hardest things about your illness and hospital visits? How do you think your family has experienced your illness and dialysis? Interview guide – family member Can you talk to me about what life was like for you before your family member developed kidney problems? What things in your life changed after your family member developed kidney problems? How has dialysis treatment changed things since then? (good and bad things) What are some of the things they need help with while on dialysis? What are some of the things that have stood out in your mind about their hospital visits? What were the best things from your perspective as a carer, about their hospital visits? What were the hardest things, from your perspective as a carer, about their illness and dialysis? What do you think is the most important thing that a hospital can provide for family carers?
It was the fear of the unknown. I thought I was going to be an invalid for the rest of my life and. . . I was saying “No Mum, I’m going to die”. . . I was thinking about leaving my husband and leaving my son.
Frank had discussed the possibility of HD with his specialist, who suggested a likely time frame that did not match the eventual reality. ‘We drew a graph and he said I had six years before the kidneys did pack in but. . . it only lasted two or three months.’ The participants themselves tended to be unrealistic about the timing of impending dialysis making mental preparation even more difficult. As a result, there appeared to be limited opportunity for timely introduction of predialysis education or the establishment of permanent dialysis access. This left participants feeling ambushed by their circumstances. Bob and his family were ambivalent about starting dialysis, but a heart attack forced him to confront dialysis as a permanent management strategy. His experience of emotional shock was heightened by the multiple body systems involved at the time: I started having angina attacks. . . The arteries were blocked. . . he had the system put in for dialysis and put stents into the (coronary) arteries, I had pneumonia. . . they put the tube down the throat. . . It has been a really dramatic experience.
The shock resulting from the sudden need for dialysis, and confronting the possibility of death without dialysis, turned peoples’ world upside down. Caregiver Kerry commented: I was talking to a lady. . . she’s quite traumatised, She said “One
participants were able to recall engaging in discussions about dialysis as a likely treatment option in the near future. Sylvia was shocked by what she perceived as unexpected invasive medical management. She explained, ‘I was going to a doctor for five years. . . he never told me a word about this.’ Carer, Janelle, also related a lack of understanding of husband Joe’s kidney disorder: Every time. . .they say “Joe, your kidney’s weak”, that’s as far as they go. . . six months ago his kidneys collapsed completely and he had to start dialysis. Never been prescribed any tablet. . .injection
day your life’s normal and the next day everything’s different. Your husband’s in a life-threatening situation and it’s like pressing a switch from night to day and the world changes”.
Some participants had limited recollection of medical or lifestyle management to precede dialysis, and some could not recall any discussion about renal replacement therapy. This raises an important question about when to implement appropriate interventions, how to create opportunities to reinforce the gravity of the situation and how to assist with the physical and emotional preparation of the deteriorating patient.
or anything.
Sharon had no recollection of dialysis discussions until she went to her general practitioner on an unrelated matter and found that dialysis was imminent. When forced to confront the immediacy of dialysis, Sharon was overwhelmed and fearful of lifelong incapacity or early death:
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Loss of sense of self Participants described a loss of personal autonomy, and this loss did not sit well with their previous sense of self. It was not just the loss of self-sufficiency, but also the loss of ability to contribute to others and the resulting burden on family.
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Mary, an older widow dependent on her busy daughter, explained, ‘You’ve lost your independence. . . you depend on other people all the time’. Vanessa lived with her brother who provided her with no practical help. Asking for assistance from people other than family placed dependence in a different dimension for Vanessa, ‘I’ve got to now ask for help from my friends. . . I’m finding it difficult to do’. For some participants, their embodied view of themselves as young and physically competent was lost; they were no longer able to perform in previously known ways. They described a loss of ability to meet their own basic needs and, consequently, felt helpless and vulnerable. For some male participants, their gendered construct of identity was severely challenged, and in Peter’s case, this led him to feelings of worthlessness: A lot of blokes would suffer depression. . . like I felt. . . Feeling useless, that they’re no good for anybody. . . I’ve always been independent. . . felt that it was a man’s place to support his family. Ever since I’ve been sick I’ve been relying on the family to keep me going. . . F—ng useless! I should have died [crying] and it would have been better for everybody ‘cause it’s so hard on everyone now.
Loss of spontaneity and personal freedom There was a sense of containment or even imprisonment associated with the initial HD period. HD only restricts movement during the actual treatment, but for some, the subsequent fatigue and loss of confidence stretched the impact beyond the HD session. Mary explained, ‘[Dialysis] restricts me. . . I just can’t get out anymore’. Frank’s family took dialysis ‘in their stride’, but for Frank, the loss of possibilities was a source of sadness. ‘We can’t get up on a weekend and shoot through to the country. . . you’re bound to go back to hospital. . .’. Bob reconsidered his ability to drive as his health worsened. ‘Even going down the road. . . I felt I wasn’t capable. I’ve been driving for 50 years and it’s a big thing. You lose that feeling of. . . freedom’. Many participants worried about the future limitations dialysis might place on holidays. Kerry (mother of Denise) explained ‘When [Denise] was on PD we used to travel. . . but with haemodialysis you can’t’. Sharon noticed the lack of ability to ‘escape’ when physically ‘tied’ to the HD machine ‘My sister will go off in the car and I’ll think to myself, “She can go anywhere!”. . .’. These concerns were genuine because arranging holidays for people receiving HD can be difficult due to the limited availability of holiday placements in Australia. Holidays must be planned well in advance and depend on the discretion of the receiving dialysis unit. Kerry explained: © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
A ‘lost life’: coming to terms with haemodialysis [Other dialysis units] won’t give you a set time. . . One person. . . had a wedding in Queensland. . . they’d be trying for nearly five months to get a date confirmed. . . and they couldn’t get it.
HD may impose significant limitations on work and retirement plans. For Vanessa who needed to be financially independent, dialysis imposed unanticipated financial stress: I’m not working. . . I get part superannuation and part disability. . . I have assets which bring me over the threshold. . . I have liabilities like mortgages, investments so I’m going to have to re-look at my finances. . . I don’t have anybody else to rely on.
Changed body feelings Commencement of HD resulted in both positive and negative sensations within a changed body. Some participants reported their body feeling better in its daily function. Sharon, who was initially terrified of dialysis, fearing disability and death, found dialysis improved feelings of wellness, ‘My health is so much better. . . I feel good. I’m not sleeping in the afternoon, I’m holding a decent conversation and I’m eating well’. Peter noted, ‘. . .since I’ve had dialysis I’ve felt much better. You can live. It got rid of all the fluid. . . the sick feeling’. This contrasted with Frank’s experience; his body felt depleted. ‘The dialysis drains you right out. . . I was worrying about my blood pressure. . . I can feel it, you get headaches. . .’. Sylvia experienced fatigue, ‘I go home and sit in my armchair and go to sleep’. This variation in physical effects is important for clinicians providing predialysis education.
Reframing family roles Our participants described the caring role as unremitting and requiring intense vigilance. It was seen as crucial that people receiving HD adapt to significant lifestyle changes, including the need to accept and receive care and acceptance of the resulting change in relationship dynamics. Many people receiving HD were buffered against the perceived burden of their care by the strong sense of reciprocity, constancy and love they received from spousal carers. Carla framed caring as something she chose to do and consciously conceived it as positive, ‘If you’re going to take care of your husband. . . I think you have to want to do it. . . this is a thing I’ve chosen to do and I will do so as long as Peter’s with us.’ There were fewer feelings of reciprocity among nonspousal carers; consequently, a greater burden was perceived. The quality of pre-existing relationships appeared to
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influence the response to caring. Annette, daughter, struggled with feelings of anger, guilt and resentment: I feel guilty ‘cause I was Dad’s girl. . .I would have walked over hot coals for my father – he expected nothing. . . but Mum expects everything. . . My mother’s always been very good at emotional blackmail. . . she’s just transferred her dependency from Dad to me. . . The [Aged Care Assessment Team] said that she was highdependency. . . She said, “If you put me in a home I’ll starve myself to death”.
The demands of dialysis seemed to polarise relationships with nonspousal relatives and friends so they were either supportive or distanced themselves. Garry was disappointed and shocked at his own family’s lack of interest in his health: ‘My partner’s family has been. . . 100% more supportive than my own. . . I’m shocked. . . either they’re finding it hard to deal with or they don’t want to deal with it.’ When participants felt this way, their confidence in close relationships was undermined. Two participants were concerned that their relationships would not withstand the illness and its consequences. Sharon worried her relationship would not survive both her diagnosis and dialysis: I was worried. . . we’ve been married 28 years. . . I thought it might be too much for him and he might leave me. . . if he did that, I’d just be devastated. . . but he sort of got into it.
Similarly, Garry lacked confidence in his relationship with his pregnant partner who was already giving so much of herself to the care of their child: ‘. . .it’s physically and emotionally exhausting for her. She’s been good to me and I really appreciate it but there’s only so much someone can go through. . . It’s been a strain on our relationship’. Carer Janet had always been confident in her spousal relationship but felt her husband was concerned about the loss of intimacy. She had to reframe the importance of sex in their relationship: I’m way younger than him. . .. sex. . . that’s not everything. We had
Loss of social connectedness Many participants felt the loss of social connectedness. Janice pointed out that these losses encompassed both work and leisure. ‘My friends keep saying ‘Come back [to Bingo]. . .’ and I’d say “I’m frightened!”’. The loss of social connection affected both patients and carers. Caregiver Kerry explained, ‘I did a lot more active things. . . we were involved with more groups. . . and I’m not anymore – not involved with anything really’. It was clear that the dialysis experience could be all-consuming. The time involved with HD and the fatigue that followed challenged peoples’ capacity to plan and maintain previous social activities. Vanessa’s interview clearly illustrated a loss of spontaneity and connectedness: [Dialysis] takes all day and then. . . I couldn’t be bothered. . . So I don’t ring people. . . I just want to stay home. . . [but] I can’t neglect my friends. . . they have been very supportive. . . When I’m on dialysis. . . that’s when I’ve got the time to ring. I’ve got to plan when I see somebody. . . make sure it doesn’t interfere with dialysis.
Paul, Sylvia’s carer, accepted the loss of connectedness, social status and broader community contribution after HD commencement. He prioritised Sylvia as his most important commitment, reflecting: I was president of the RSL social club. . . I gave it away ‘cause she’s not able to go. . . Every six weeks we used to have a trip. . . but she just couldn’t continue. . . I couldn’t do two things, she comes first.
So overwhelming was the impact of dialysis that several participants grieved for a ‘lost life’. Sylvia explained, ‘I’ve got no life. I’ve got to come here three times a week’. Garry pointed out ‘I’m only 33. . . I didn’t have any worries. . . It was a good life but now. . . so much has changed. . . you really want your life back’. Similarly, Vanessa commented ‘It’s like a loss of a life. . . the life you knew is no longer like that. So it’s a grieving process’.
our times. . . I keep saying “Who cares?. . . we have six beautiful children”. He said “I know you say that because you don’t want to hurt me” and I can see the guilt in him.
For others, the issue of living organ donation further complicated family dynamics. Some participants were reluctant to ask family to consider organ donation. Others were particular about whom they would approach. For example, Frank would accept a kidney from his wife but not his adult child. Garry’s family were initially willing to consider donation but had avoided further discussions. Vanessa’s brother did not want to be involved at all, and Sharon was unwilling to accept a kidney from family.
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Discussion Heideggerian hermeneutic phenomenology allowed an understanding of the complexity of the early HD experience, situated within the everyday concerns of people. The essence of the experience, a lost life, emerged from the supporting themes which were well developed and richly described by participants. The inclusion of family strengthened the data revealing multiple perspectives of loss and confirming ESKD as a family experience. This sense of a lost life sits in contrast to what some might expect as relief associated with life-saving treatment. The losses were © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
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multifactorial: physical, emotional and social. This notion of loss is also reflected in quantitative measures CKD (Chan et al. 2009). While there is a vast body of research on dialysis outcomes, our findings are novel in their focus on the early dialysis experience and the impact on family members. Only one other study was found to focus on dialysis commencement (Lai et al. 2012) but did not include family perspectives. This Singaporean study that recruited participants of Chinese and Malay background also noted ‘shock’ and a ‘loss of purpose in life’ and participants perceived themselves as a burden to caregivers. It was clear that decisions regarding dialysis required careful consideration and collaboration between patients, close family and clinicians. However, a recent meta-synthesis analysing patient and family decision-making reported a lack of choice about CKD treatment options (Morton et al. 2010). This was attributed to contraindications, physician preference and a lack of information about options. Resource constraints created further barriers to treatment choice determining issues like hospital vs. home dialysis. In our sample, the rapidity of predialysis decline was also a major factor. It appears that for people choosing dialysis over conservative care, successful transition depends on their willingness to consider all treatment options, their participation in individualised predialysis education and counselling, the proactive creation of vascular access and timely dialysis initiation (Iles-Smith 2005, Gutierrez Vilaplano et al. 2009, Davison 2011). People with ESKD and their families require considerable preparation for HD. Our findings may assist the multidisciplinary team to understand the emotional and physical challenges arising from therapy that is invasive, restrictive and painful. Often the diverse needs of people and families experiencing HD exceed the capacity and scope of practice of the renal team, particularly the HD nurses. This underlines the benefits of interdisciplinary and social input (Dermody & Bennett 2008), known to benefit people living with long-term illness (National Heart Foundation 2010, Harris et al. 2011). The loss of spontaneity and freedom in our findings is similar to experiences of participants with COPD on home oxygen who are socially isolated and ‘tied’ to their machine (Ring & Danielson 1997, Gullick & Stainton 2008) A healthy social life has been identified as an essential feature of adaptation to HD in a meta-synthesis of qualitative HD research (Bayhakki & Hatthakit 2012). A more balanced life is possible for a range of chronic illnesses where alter© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 3262–3273
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native models of health care create patient-centred approaches (Jeon et al. 2010). Our participants were, however, new to the HD experience, were still on in-centre dialysis and had yet to re-establish their social world. Possible areas for practice improvement include more proactive facilitation of home dialysis and addressing the lag in dialysis commencement that contributes to social losses during deteriorating health. Those patient participants who did not identify strong family support appeared to have greater difficulty coping with the demands of dialysis. In a robust study of the effects of social support for dialysis patients, a perceived discrepancy between expected and received social support was associated with increased mortality (Thong et al. 2007). This resonates with findings for a range of chronic illnesses (Penninx et al. 1997). Providing care and support for people receiving dialysis is demanding and stressful for families. Many consider CKD a ‘family disease’ because of the impacts which extend far beyond the individual receiving treatment (Clarkson & Robinson 2010). Long-term management may mean families undertake a range of complex activities such as active facilitation of home-based HD. Families and friends often assist with activities of daily living and transport. This level of involvement places considerable pressure on personal relationships and may incur feelings of anxiety, depression and isolation from other relatives and friends (Tong et al. 2008, Parlevliet et al. 2012). In addition, our younger caregivers appeared to experience more caregiver burden due to a decreased sense of reciprocity. These findings are similar for younger, nonspousal caregivers in COPD (Gullick & Stainton 2012). The enormous losses expressed by our participants signal a need for increased psychological support during this initial phase of dialysis to facilitate improved coping, particularly where family support networks are not strong. Formal patient and carer support networks were not visible to our participants, and several suggested the availability of such support would be beneficial, both before and after treatment initiation. Support networks could allow expression of emotion through conversation or writing: activities reported to decrease stress and anxiety in chronic illness, restoring a degree of balance and normality (de Ridder et al. 2008, McCarley 2009). Some patients and caregivers expressed a mutual need for family presence during the early HD period, and this is known to create a perception of immediate support (Ziegert & Fridlund 2010). This has important implications for dialysis unit design and culture, including issues of available space and staff receptiveness.
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The essence of a lost life requires a temporal understanding of the early HD experience. Heidegger’s temporality is not merely a single timeline of past, present and future, but multiple dimensions of experience that we reach out towards and see ourselves within (Richardson 2012). Our sense of past is how we see our ‘self’’ already being. That self is made visible through emotions, and it is from our sense of past that people give meaning to events. Our participants’ new life with HD appeared to challenge their past self as a free, self-determining being. Our participants’ future may be framed as the ‘who’ that a person is trying to be as they reach towards their own potentiality of being (Heidegger 1927/1996), ‘stretching all the way out to my death’ (Richardson 2012, p. 183). Future is envisaged through Heidegger’s notion of ‘care’ (1927/1996, p. 249). ‘Care’ encompasses the personal concerns that shape participants’ projection for future possibilities. In his analysis of Heidegger’s philosophy of freedom, Lee Nichols (2009, p. 74) explains that we can let our relations with our world dictate who we are, or it can be acknowledged that I, as a being who can question the meaning of my own existence, will always have possibilities and it is I who will determine my existence. Our participants’ narratives about the early phase of HD and their communication of a lost life actually portrayed a sense of lost future. People appeared so overwhelmed by the enormity of change that they were not yet ready to reframe their existence by grasping alternative possibilities.
Limitations This was a single-centre study. Due to the semiotic nature of hermeneutic analysis, we excluded people needing an interpreter because shared understanding is not guaranteed across culture and language. This meant we did not explore the experience of people who were non-English speaking. We acknowledge the importance of culture on experience, and while our setting may share similarities with other western institutions, findings may not be fully transferrable to other cultures. The median age of our patient participants is much younger than that reported in Australian and New Zealand statistics (405 vs. 607 years) (McDonald & Hurst 2011), and so their experiences may differ from that of older people. Our study could be strengthened by a larger sample of carers, although our themes for carer experience were rich and well developed. While all our participants were new to HD, some had previously received peritoneal dialysis, and we acknowledge this may have changed their experience.
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Conclusion It appears that people may embark upon HD mentally and physically underprepared. A greater focus on preparation for the possibility of dialysis and frameworks of care that support adjustment to this new way of life are of vital importance. Family presence during HD, and support groups for patients and families, may assist with transferring some of the load from the healthcare system to a more robust social system.
Relevance for clinical practice Chronic kidney disease management requires a comprehensive and patient-centred model of care. People receiving HD could benefit from family presence during predialysis education and facilitation of family presence in the HD unit in the early phase of treatment. Patient and carer support groups, whether face-to-face or online, could enhance social connection. The diverse and complex needs of HD patients and families are more likely to be addressed through interdisciplinary and social input.
Acknowledgements This study is a joint project of the Sydney Nursing School, University of Sydney, and the Concord Repatriation General Hospital, Sydney. It is the culmination of research output from one research cluster within the Concord Hospital Clinical Nurse Consultant Research Skills Development Project. We acknowledge the practical and academic support of Associate Professor Sandra West, Sydney Nursing School, University of Sydney and of Karina So and Mary Dunleavy, Concord Repatriation General Hospital for their assistance with data collection. This study was funded by a grant from the Sydney Nursing School, University of Sydney, and a CRGH TAB (Totaliser Agency Board) Nursing Scholarship. We acknowledge the important contribution of the patients and carers who so generously shared their stories.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethi cal_1author.html), as follows: (1) substantial contributions to conception and design ,acquisition of data or analysis and interpretation of data; (2) drafting the article or revising it critically for important intellectual content;, and (3) final approval of the version to be published.
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Original article
A ‘lost life’: coming to terms with haemodialysis
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