The Psychosocial Experience of Patients with End-Stage Renal Disease and Its Impact on Quality of Life: Findings from a Needs Assessment to Shape a Service

Background. A needs assessment was conducted on renal patients registered to a leading hospital trust in London in order to explore their psychological, social, and spiritual needs. The aim of the needs assessment was to create an evidence base for the development of a comprehensive health psychology service to run concurrently with a renal counselling support service within the department. Methodology. This study utilised a series of semistructured face-to-face interviews and focus groups with renal patients and their carers, to explore how ESRD impacted quality of life. Results. A thematic analysis was undertaken. Seven emergent themes were identified that influenced the quality of life of people with EDRD: physiological impact, impact of treatment, impact on daily life, psychological impact, impact on relationships, social impact and coping responses. Conclusion. The needs assessment clearly identified that ESRD carries with it emotional, physical, psychological, social, and existential burdens. The data from this needs assessment study has created an evidence base upon which future health psychology services can be built within this leading UK hospital.


Psychosocial Effects of Kidney Disease
End-stage renal disease (ESRD) is a debilitating, chronic condition whereby the kidney failure requires arti�cial means of excretion for survival. e primary means to achieve this are by peritoneal dialysis or haemodialysis (done several times weekly). Consequently, patients with ESRD undergo a number of lifestyle, dietary, and �uid restrictions in order to accommodate their illness.
ese lifestyle restrictions signi�cantly impact on social functioning with patients performing a balancing act to ensure maintenance of vitamin, iron, and protein levels. Such restrictions can impact on patients' illness beliefs, sense of personal control leading to anxiety and depression, inhibiting coping, and adjustment [1,2].
Kimmel et al. [1] investigated the impact of psychosocial factors on behavioural compliance and survival in urban haemodialysis patients. Depression was related to decreased adherence to treatment. Depression is strongly recognized as a common psychological problem in haemodialysis patients [3][4][5][6]. e rate of psychiatric disorders in a population of ESRD patients was considerably higher than in a population with other chronic medical conditions [3]. Chilcot et al. [7] reported that 20-30% of ESRD patients have signi�cant depressive symptoms compared to the lifetime prevalence of depression in the general population of approximately 16% [8]. Depression can complicate long-term conditions, potentially becoming more resistant to treatment over time [1,[3][4][5][6]. Depressed patients are found to be three-times as likely to be noncompliant with treatment recommendations as nondepressed patients [9].
Additional stressors associated with ESRD include biochemical imbalance, physiological changes, neurological disturbances, cognitive impairment, and sexual dysfunction. All can potentially play a role in depression.
A qualitative study by Gregory et al. [10] found patients with ESRD receiving haemodialysis developed a new identity and sense of self. is new and evolving emotional/psychological state indicated that patient's became cognisant of a new set of circumstances: an uncertain future, demands of illness, dependence of machinery, medication, and healthcare providers.
Kimmel et al. [1] found that perception of illness intrusion is linked to poorer survival rates. Illness representations predicted nonadherence to �uid restrictions amongst haemodialysis patients [11]. Compared to other chronic illnesses, haemodialysis patients assessed their physical health as markedly diminished [12]. Illness perceptions are signi�cant predictors of coping, adjustment, and outcome [13]. Additionally, within a sample of UK renal patients, patients' perceptions of treatment control predicted survival independently of survival risk factors, including comorbidity, illustrating the negative impact of maladaptive illness perceptions on clinical outcomes [13]. Griva et al. [14] found that treatment and illness perceptions were formed as a function of different ESRD treatment.
Transplanted patients perceived their condition as less chronic, reported fewer symptoms compared to dialysis patients.
Curtin et al. [16] provided insights into "the transformational experience" of survivors of long-term dialysis. e restructuring of illness beliefs and modi�cation of "illness" cognitions result in positive changes; patients can become "active self managers of their disease, its treatment and its manifestations. " "e concept of transformation is oen advanced as the embodiment of successful adjustment to a chronic illness" (page 614).
Diminished quality of life (QOL) is linked to limited personal freedom and control, for example, lengthy treatment time extended lives but contributed to these restrictions [3]. Loss of freedom was also associated with protracted preparations for dialysis which was a major source of frustration. Overall, the loss of freedom had wider implications altering marital, family, and social relationships [2].
A sense of control over illness in�uences coping and adjustment in a long-term physical health problems. Cvengros et al. [17] found that health locus of control could be enhanced by helping patients to focus their attention on practical ways of coping.
A randomised controlled trial of a cognitive behavioural therapy empowerment intervention indicated signi�cant improvements in sense of empowerment, self-care, selfefficacy, and depression, when the following strategies were implemented: identi�cation of problem areas, exploration of emotions associated with these problem areas, goal and strategy development, implementation of behaviour change plans, and stress management. Such interventions might be effective in improving self-management [18]. Impaired self and body image are common psychological consequences of living with ESRD. Self-image and selfesteem have a bearing on aspects of QOL, which encompasses the physical, social, and emotional elements of wellbeing [14]. Patients may have to adjust to their changing appearance by altering the way they dress and how they relate to others.
Dialysis treatment can signi�cantly impact upon body image, as patients might perceive themselves as unattractive [19]. For example, procedures to create a point of access for dialysis via a �stula, neck line, or catheter can all change the appearance of the body. Immunosuppressant drugs taken to prevent organ rejection also contribute to obvious bodily changes impairing self-acceptance. Re�ecting upon renal nursing practice, Muringai et al. [20] discussed the need for a "holistic assessment tool" that allows for psychological considerations of body image.
e roles within marital relationships change when a spouse or partner becomes a carer and can give rise to depression in the carer as a consequence. e patient might become the focus of negative emotions [5]. In addition, sexual difficulties can sometimes occur as a result of erectile dysfunction in male patients with ESRD and can undermine intimacy [21,22]. A literature review by Low et al. [23] explored the impact of caring for a patient with ESRD, in relation to quality of life, psychological health, morbidity, responsibilities or "burdens, " and coping strategies. It concluded the profound changes in roles and relationships on partners and within the family as a consequence of ESRD.
It is apparent from this literature review that a number of disease and treatment related factors that restrict lifestyle and undermine QOL in people with ESRD. Psychological support to help patients cope with lifestyle restrictions and to enhance personal control through self management strategies are essential, as outlined in the National Service Frameworks (Department of Health, 2005) [24].
According to the National Institute of Clinical Excellence (NICE), a "Health needs assessment (HNA) is a systematic method for reviewing the health issues facing a population, leading to agreed priorities and resource allocation that will improve health and reduce inequalities" [25]. e aim of the needs assessment was to create an evidence base for the development of a comprehensive health psychology service to run concurrently with a renal counselling support service within the department as a means of responding to the recommendations made by the National Services Frameworks (NSF) [24]. e purpose of this needs assessment was to investigate ways of improving services to renal patients as part of wider modernisation initiative and to create evidence base of patients needs.

Participants
118 patients and 12 carers took part in the qualitative phase of this study. Participants from each stage of the renal illness trajectory from predialysis to posttransplantation were represented to explore the range of patient experiences.

Inclusion Criteria
All adult patients (above 18 years) who currently had or once had a diagnosis of end-stage renal disease and currently received or had received treatment or medical care from the renal services within a single London trust were eligible to participate.
is included the following: All dialysis patients (including peritoneal and haemodialysis) were eligible for the needs assessment, including those who were being treated in four satellite units linked to the trust.

Exclusion Criteria
Patients with recognised mental health difficulties or in the terminal stage of their illness were not included in the study.

Recruitment Procedure
Fiy patients were recruited to take part in focus group or semistructured interviews at the time of their participation in a brief questionnaire survey element of work that was being conducted internally by the renal department. e remaining 68 patients and 12 carers were recruited by the researcher with the help of doctors and nurses within outpatient's clinics and dialysis units.
Carers were recruited through a process of snowball sampling, whereby some patients who had participated referred interested carers to the researcher.

Methodology/Procedure
e research utilised a qualitative methodology of semistructured interviews and focus group discussions. Both interview types followed key themes that explored the following: Speci�c interview schedules were developed and piloted with two patient representatives, one male post transplant and one female at predialysis stage. Five focus groups were established. Separate groups were arranged for patients and carers/signi�cant others. Approximately 50 individual interviews were arranged at the convenience of the patients.
All patients provided written consent before their interview for interviews and focus groups to be recorded. A thematic analysis was undertaken and qualitative soware was (NVivo version 7) used to analyse interview data. ematic analysis was chosen as most for reporting "experiences, meanings and the reality of participants" [26]. A data driven or inductive approach was taken so that the data was able to speak for itself, encapsulating all the nuances of meaning and language in the context of the renal experience. Consequently, it did not �t into a preexisting coding frame. is method was best at presenting the themes of the whole data set, beyond pure semantic meanings, and looking towards themes that ascertain, explore, and interpret the words of the patients.

Sample Characteristics
e mean age of the patient sample was 55 years and 40% of the sample was from black and minority ethnic backgrounds. Details of the sample characteristics of patients and carers recruited are illustrated (Table 1). e breakdown of patients recruited to the study across the renal trajectory is shown ( Table 2).

Findings
Analysis of verbatim transcripts identi�ed the following themes. Physical impact of ESRD (i) e impact of treatment, that is, on activities of daily living. (ii) Psychological impact (loss of control, anxiety and depression). (iii) Coping responses and the role of religion/spiritual beliefs. (iv) Impact on relationships.
An important aim of the research was to explore the impact of ESRD on quality of life, hence, an appropriate quality of life framework was used against which the qualitative �ndings could be contextualised. e World Health Organisation Quality of Life (WHOQOL) model [15] was therefore used for the analysis of the data. e domains and facets which measure overall quality of life and general health are shown (Table 3). e facets in bold were themes that arose from the qualitative data in this analysis. We have illustrated the interconnected nature the domains of the WHOQOL, and how our data fell into these categories. Additional themes that arose from our data help to conte�tualise our �ndings below. Taking medication was another important part of the treatment regime. �sing steroids had duel bene�ts and adverse side effects that changed bodily appearance. Several patients were unaware of the cumulative effects of steroid use on their appearance.

Impact on Activities of Daily Living
All of the patients mentioned that the restrictions to �uids, diet, and leisure activities were signi�cant losses. Strict daily restrictions to diet and �uid have to be contended with as constant reminder of the impact of ESRD. Such restrictions also signi�cantly affected social interactions and leisure activities, causing difficulty. ese restrictions require much in the way of daily forward planning and organisation. Psychological support such as cognitive behaviour therapy might be an effective way of supporting patients that put their health at risk due to poor concordance with �uid restrictions, which over time can result in heart failure.
e physical symptoms of ESRD also affect employment.

"I feel like I've got no prospects. I cannot get a job. If I go out to look for a job, I get to the interview stage and they start asking me if there are any questions. I say, 'right, well I'm a kidney patient, I'm waiting for a transplant, I need to do dialysis three times a week which means I need to take x, y, z amount of time off work. " [M98]
Having to give up employment was another source of stress.
"I was on dialysis three or four hours a session, three days a week. When I put in for disability allowance they refused me. I had to take them to the tribunal to get disability allowance. I was receiving the treatment at the hospital and still they said I did not qualify. " [M69]

Social Activities and Leisure
Patients referred to the time consuming nature of treatment that reduced time for leisure and social activities. Dialysis treatment is intensive physically and emotionally. Patients oen dedicate up to three days a week to treatment, and sometimes including the weekend. Treatment sessions can last for several hours at a time, requiring patients to travel to hospital/dialysis satellite unit. e combination of regular travel and lengthy treatment time impacted on personal freedom.
"You not only lose the whole day that you're here but you lose the rest of the day because you haven't got time in the morning to do anything before you come to the unit, and then you're too tired and not well when you get home at night. So you might as well just write off three days a week. " [F29] 13. Psychological Impact is theme was an umbrella term which incorporated several subthemes including control over ESRD and ensuing depression.
It appeared that some stages of the disease were more traumatic than others. Some patients experienced psychological trauma around diagnosis or commencement of treatment if they were not well informed about what to expect. ese traumas had an impact on their ability to cope with the illness and treatment. A lack of adequate preparation about haemodialysis treatment resulted in a strong psychological response for this patient.

"… I had a panic attack when they �rst stuck the needle in [my �stula] because nothing had been explained… and that developed into regular panic attacks…" [M47]
is contrasted with other patients who received good preparation and education from nursing staff. is was reported as effective for empowering patients, enabling them to cope better.
"ey're very good here. We've all been gradually educated about our dialysis by the nurse in charge… e education was really good I think because it demysti�es the whole system [of treatment]. " [F37]

Self Care and Taking Control
Several patients discussed the importance being given the opportunity to self-care, for example, preparing their machines or �needling� their �stula�s for haemodialysis treatment. Patients reported a sense of independence and autonomy which was very important in coping with the routine of treatment.
"At �rst it frightened the living daylights out of me when they told me I need to needle myself. �ut when I've done it I �nd that I do have more control and it has begun to make me feel a bit more useful… ey said they're promoting self-care and I'm all for that. So I'm one of those who is glad 6 ISRN Nephrology that they want us to be involved more and help ourselves more. " [F17] e role of the "experienced patient" in empowering newly diagnosed patients was discussed as a positive resource that could provide education and peer support.
"Patients are your biggest resource. I mean I said this to the doctor. Look, actually your budget is really constrained but did you realise that you've got the biggest resource out there that you're not actually utilising? Your resources are your patients. Utilise their skills and experience and knowledge. Some people will engage with it, some people won't, but patients are such a huge free resource out there. So it's got to be a win-win, has not it?" [F90]

Negative Feelings: Depression
In all of the interviews, patients spoke of a variety of losses and treatment burden experienced. Depression was a common psychological response. e following quote describes a loss of freedom.

"I felt like a bird whose wings had been clipped. " [F40]
A majority of the patients sampled expressed feelings of depression as a result of reduced quality of life.

"You cannot help feeling this way. What really depresses me is when I think of other things I probably would have been doing now that I'm unable to do because I'm hooked to the machine. Yes, at times like that I do feel very depressed. " [M80]
A sense of hopelessness was also expressed.

"I do not want to sound like I'm suicidal or anything because it's far from but I've been doing this four years now, and I wonder, am I going to get a transplant? I'm thinking to myself can I really do this for another 5 years or 10 years?" [M14]
In order to cope, most patients reported that they "just got on with it. " For some, feelings of sadness and depression were a constant struggle, and they implied that they felt "trapped" by their circumstances.

Death and Mortality
oughts about dying and death featured in many interviews. Mortality was discussed in relation to withdrawing from treatment. is patient contemplated the idea of withdrawing from dialysis as a "relief " from suffering.
"Having this renal failure business is so bad. I do not care what happens really. I used to hear about these people signing these forms and two weeks later they're dead. I suppose that's a wonderful relief rather than suffer because I heard they take you off all your medication. You just sign a form and, they stop all your medication, no dialysis, put you on morphine and in two weeks you're a goner. " [F70] 17. Impact on Relationships Personal relationships were also transformed by the symptoms of ESRD. Fatigue, infertility, low energy, and mood, physical changes to the body, for example, catheter, weight gain, and scarring, all played a role in undermining con�dence and self-esteem. Sexual activity and intimacy was also reported as signi�cantly compromised requiring adjustment for both patients and their partners. Changes in perceptions of roles within the relationship were also evident.
"You still love but its different love… I feel like more of a carer than a wife to be honest or mother even, to some degree. It's very difficult. You just fall into a different role. " [Carer 6] ose not currently in a relationship discussed how ESRD might affect their ability to form a relationship.

"… I would say it's �nding the right partner who can cope with someone who's on haemodialysis. At the moment I'm still looking for that partner. It's made me realise that I hope to meet somebody who has an understanding of what I'm going through…" [M100]
Additional worries were related to sexual dysfunction or an inability to form an intimate relationship. All of these factors combined to diminish con�dence.

Availability of Health and Social Care
Patients discussed that they were oen in need of additional help aer they le hospital. e following statement indicates that there is a signi�cant need for better partnership between health and social care agencies in order to assist chronically ill patients in the best possible way. Patients also felt that they were disadvantaged by the levels of bureaucracy involved in seeking assistance for social services.

Coping Responses
Faith and religion was discussed as a means of coping and adjusting to ESRD. Some described how their faith linked them into a religious community, offering a support network. Many said their faith enabled them to keep an existential perspective over their condition. e patient below talked about faith as having a protective effect: 20. Discussion e �ndings clearly indicate that there was a considerable psychological burden along the renal pathway and considerable impact on quality of life for those living with ESRD. Our sample gave insight into these complexities, as demonstrated by the relationships between domains of the WHOQOL framework [15] and the facets that arose from our data analysis. According to Cukor et al. [27] "stress is a concomitant of chronic illness and its treatment, and may have meaningful in�uences on psychological or medical outcomes. " e majority of patients in this study reported negative feelings experienced as a result ESRD. Anxiety, depression, and in some cases, suicidal ideation were discussed by the patients in this sample. Some patients also spoke about experiencing grief for the loss of their kidney. is was particularly obvious for those whose transplants had failed. Transplant represents hope for a better quality of life, its failure, coupled with the sense of loss and disappointment as well as a huge sense of dread at having to return to dialysis treatment, is psychologically challenging.
Despite our study being qualitative, the experience of symptoms in our �ndings comparable to other end-stage patients with advanced cancer, AIDS, heart disease and chronic obstructive pulmonary disease (COPD). e systematic review conducted by Solano et al. [28] showed there was a common pathway of 11 symptoms as prevalent in advanced disease as in advanced cancer. Despite methodological disparities in their included studies, they found that for all 5 diseases, up to 50% of patient experienced pain, breathlessness, and fatigue. Similarly, the systematic review by Janssen et al. [29] also found great heterogeneity of symptoms, they asserted signi�cant symptom burden amongst patients with congestive heart failure, COPD, and chronic renal failure.
Within the renal setting, supporting patients with psychological distress can be addressed by health psychologists, with an aim to improving coping mechanisms and enhancing quality of life. is could be done by establishing services or multidisciplinary care approaches which incorporate a holistic framework.

Conclusion
Quality of life is de�ned by the WHOQOL group [30] as "an individual's perception of their position in life in the context of value systems in which they live and in relation to their goals, expectations, standards and concerns. " e data from our study indicates that living with a chronic illness such as end-stage renal disease can greatly compromise the "value systems" that patients hold relating to what gives their lives quality and to what they attribute meaning in their lives. It is clear from those who participated in this study that end-stage renal disease undermines every area of a patient's life.
is study has been valuable in illustrating the ways in which ESRD destabilize QOL. It has also added to existing data, on QOL in renal disease. Additionally, this research has responded to the application qualitative data as a means of informing quality of life within speci�c illnesses [31]. However, a major limitation of this study is a lack of reference to speci�c health related quality of life framework and caution should be applied in generalising the present �ndings to all people with ESRD. NICE guidance on depression in people with physical health problems has huge relevance to ESRD NICE recommends the identi�cation and treatment of depression in adults when such difficulties occur in the context of a chronic health problem [32].
Markers of good practice according to the Department of Health's paper for delivering NSF for renal services [33] are "Referral to a multi-skilled renal team, where possible at least one year before the anticipated start of dialysis treatment, for appropriate clinical and psychological preparation. is principle should also be followed for people with a failing transplant. " Given the range and extent of patient and family members needs identi�ed in this data, a recommended health and social care response, on local and national levels to correspond with NSF standard/quality requirements, would be to provide health psychology support services within hospital and satellite units, providing patient centred care, and supporting patients to manage their condition and "achieve the best quality of life. " e data from this needs assessment study has created an evidence base upon which future health psychology services can be built within this leading UK hospital. As a direct result of this study, funding was achieved for the employment of a health psychologist and a clinical health psychologist was also appointed to address the huge psychosocial needs of the renal population.