families / carers when living with CKD. It will highlight the various psychological effects that can impact upon patients, along with management strategies that may assist patients and their partners/ families and carers to cope with this chronic illness. The role of the various members of the renal healthcare team will be highlighted together with ways in which they can assist patients and families to cope with the various facets of treatment modalities for renal disease.

It is vital that the psychological perspectives of patients with renal disease are not underestimated. Hope, a patient living with CKD, identifies the need for more action to support the reduction of mental health problems for those living with long-term conditions (Hope 2012) following the recent report from the UK Department of Health (2011). This patient identifies the need for a robust campaign to highlight more awareness – among renal healthcare providers, patients and carers – of the cause, prevalence and frequency of renal replacement therapy (RRT) and its complications, including depression, anxiety and poor coping mechanisms that some patients face. There must also be recognition of the interrelationship between mental and physical health.

Hope (2012) further calls on the need to target what really is relevant to all patients across the age divide, which is quality of life (QoL). He asserts that by concentrating on QoL, both physical and mental health can be delivered to patients where it is relevant in their lives when they are not receiving direct care. There is also a need to prioritise treatment modalities such as self-care in satellite units, home haemodialysis, continuous ambulatory peritoneal dialysis (CAPD) and pre-emptive transplantation, which provides patients with improved control over their lives and enhances overall QoL, along with mental and physical wellbeing. Finally, there is a need to recognise that kidney failure is a family concern as it can affect carers / family members’ mental health, along with patients; it is important that patients and families / carers are all supported (Hope 2012).

Dixon (2012) identifies self- management and patient empowerment as familiar concepts in the management of CKD. It is untenable for the healthcare service not to prioritise and direct these concepts given the ageing population along with the number of people diagnosed with CKD and their subsequent demand on healthcare service. It is well documented how self-management promotes both physical and psychological wellbeing in individuals with chronic health illness. However this remains a challenge for both patients along with healthcare providers to create sustainable strategies. Living with CKD involves many challenges apart from the psychological impact of having a noncurable and life-threatening illness; these include illness-induced interruptions to day-to-day activities, interests and lifestyles. Patients need both psychological and social support to prevent them from assuming a fatalistic perspective and a view that they have no control over their circumstances – surrendering control. Emotional responses such as anxiety, depression, fear and uncertainty are commonly expressed by individuals living with CKD. There are many patients who do not have the self-confidence to self-manage their illness (self-efficacy), which has been related to emotions such as powerlessness and depression. However, psychological and social support are important factors in improving self-efficacy, which has been highlighted as the only independent predictor of self-care/ self-management. There is a need for a high input of psychosocial support including practical and financial advice for the many challenges that renal patients face on a daily basis if high levels of self-efficacy and sustainable self-care / self-management are to be achieved. In current recessionary times, it is important to recognise that both psychological and social support care delivery could be affected in favour of the physical aspects of renal care delivery. The relevance of self-care must not be underestimated in patients living with CKD as they are inescapably their own carers and they need this psychological support. If this area of support delivery is reduced it could negatively affect clinical care outcomes along with patients’ overall wellbeing and QoL (Dixon 2012).

Chronic Kidney Disease

The majority of patients with CKD stage 4–5 (estimated glomerular filtration rate (eGFR) <30 ml/min/1.73 m2) or with CKD stage 3 and rapidly deteriorating renal function should be referred to a nephrologist for assessment (see Chapter 6). Ideally, patients should be referred at least a year before it is considered that they need RRT (Farrington and Warwick 2009). Fischer et al. (2011) assert that interventions are badly needed to diminish late referrals for treatment and enhance patients’ health when living with CKD. Smart and Titus (2011) assessed the impact upon clinical outcomes of early versus late referral of patients to renal services. They highlighted the advantages of early referral, including enhanced survival and reduced hospital stay. It must be recognised, however, that the percentage of people who are referred to renal care late (that is, within three months of requiring dialysis) has diminished since the early 2000s, possibly due to the introduction of eGFR and better identification of people at risk of progressive CKD by primary care practitioners. See Chapter 6.

The NICE guidelines (National Institute for Health and Clinical Excellence 2011) highlight that patients and their families must be provided with both oral and written information concerning pre-emptive transplant, dialysis and conservative care to enable them to make informed choices about their treatment. Patient-centred care must be provided that takes on board patients’ unique needs and preferences. The management of care must be maintained by evidence-based information, which enables patients to make informed decisions concerning their care. There must be effective communication with all the relevant parties involved. Patients and partners/ families and carers must be giving the opportunity to participate in decision making concerning their treatment and care (National Institute for Health and Clinical Excellence 2011).

There are many challenges facing individuals living with end stage renal disease (ESRD), particularly those receiving dialysis. Patients usually undertake dialysis three times per week for 3–5 h each time, or undertake peritoneal dialysis exchanges three to four times daily or attached to a machine at night time, for many years consecutively. This all indicates having to manage major stressors including symptoms of CKD, and the related problems psychosocial consequences. Patients are often confronted with limitations in food and fluid intake with symptoms such as itching and lack of energy, with psychological stressors such as loss of self-concept and self-esteem and feelings of uncertainty about the future (Kaptein et al. 2009).

Patient Choice

There are two main types of dialysis available: haemodialysis (HD) and peritoneal dialysis (PD). Each of these can vary – for example, there can be home haemodialysis, in-centre haemodialysis along with CAPD, assisted peritoneal dialysis (aPD) and automated peritoneal dialysis (APD). It is important to explain all of the treatment options that are available. The major considerations that determine the best form of dialysis for individuals with CKD are their preferences concerning which therapy suits their daily life best, the choices that are available within their renal unit and clinical contraindications. Other considerations concerning PD that patients and families / carers should take into account include the skill to undertake this form of dialysis themselves; social support to assist them to undertake PD; incorporation of dialysis within personal and professional activities; opportunities to retain social connections; potential adaptations to their home; the time and distance journeying to hospital; flexibility of daily therapy; nutritional and medication regimens and potential alterations to body image and physical pursuits due to dialysis access points (National Institute for Health and Clinical Excellence 2011).

Haemodialysis

According to Wadd et al. (2011) there is a paucity of literature that has examined the experiences of parents receiving haemodialysis. Related research has identified vital themes such as restricted lives; relationships; changes; ramifications and future outlook. Parents experience numerous illness-related symptoms, including fatigue and uraemia. These can impact upon their ability to provide both physical and emotional support to their children. The time spent with dialysis treatment can minimise time spent engaging with children in both play and school activities along with other day-to-day activities such as work and household responsibilities. Wadd et al. (2011) asserts the necessity for further research in this area to ascertain the experiences from parents’ viewpoint.

In the study by Harwood et al. (2009) an instrument (CKD stress inventory – CKDSI) was developed to measure the stressors of CKD patients, the identification of these stressors, and to ascertain what coping strategies were used and effective. The CKDSI is a 34-item instrument, which is classified into logistical, psychological and physiological stressor subscales. The most recurrently reported stressors were fatigue, difficulties in sleeping, peripheral neuropathy, muscle cramps, restless legs and shortness of breath. The most frequently and effective coping strategy was optimism. Other effective and commonly utilised strategies were confrontation (such as challenging a stressor head on), supportant (accessing support from others), and self-reliance, whilst emotive, fatalistic and evasive strategies were less routinely used. There was a positive association between stress and coping with less stress reported by older adults and those with more kidney dysfunction.

It has been highlighted that renal healthcare providers need to create strategies that promote patients to use humour effectively, along with positive thinking, whilst concurrently educating patients to use strategies that assist them to maintain normality within their life as much as feasible. It is also important that staff recognise those individuals that react more emotionally and demonstrate more stressors and less effective coping strategies. A collaborative team approach may assist these individuals using an educational and supportive care plan that can assist them to both adapt and manage their CKD (Harwood et al. 2009). It must be recognised, however, that those who are not coping do not always show emotion.

Harwood et al. (2012) hypothesised that increased stressors and maladaptive coping responses would impact upon the selection of dialysis modality, specifically home HD. This study highlighted that individuals on home dialysis versus in-centre haemodialysis reported significantly fewer predialysis stressors, although coping was not associated with dialysis modality. The authors concluded that predialysis stress levels predicted dialysis modality and recommended further interventional studies to address chronic kidney disease stressors with the aim to improve home-dialysis usage.

An arteriovenous fistula (AVF) is ideally the vascular access of choice for haemodialysis, followed by the arteriovenous graft (AVG), with the least preferred option being the central venous catheter (CVC) (Murphy 2011a). Preparation for AVF access should follow when patients are at stage 4 CKD (eGFR less than 30 ml/min/1.73 m2). The AVF should be created three months (minimum) before the initiation of HD, although ideally not in excess of one year from the expected date of HD. However, it can be difficult to predict the rate of progression in some patients, thereby making the timing of access placement problematic (Fluck and Kumwenda 2010).

Patients should be involved in their illness pre- and post-vascular access insertion and long-term management. There can be significant problems related to vascular access resulting in increased morbidity and mortality if not properly treated. It can be very difficult for patients to adapt to having a chronic illness and the prospect of having HD treatment. There must be continuous education and psychological support provided to the patients and partners/ family members.

Patients can experience body-image concerns, self-concept, and anxiety regarding their vascular access (Dinwiddie 2008). Patients must remain at the centre of care delivery as vascular access is their lifeline to haemodialysis treatment. The renal healthcare team, especially the nurse, play a vital role in the management of patients’ vascular access (Murphy et al. 2011).

Peritoneal dialysis

Keddo (2010) asserts that the nurse’s attitude and confidence during the initial meeting with the patient and his or her family is vital as it could make the difference between a successful PD assessment and one that is not. This could be said with any meeting with patients and their partners/ families and carers to discuss treatment options. There are many psychosocial challenges whilst trying to adapt to PD. This includes language, literacy, limited memory and family support. Language can be a challenge and an impediment to learning if, for example, the patient does not speak the native language (Thomas 2009). McClure (2010) concurs that there are additional challenges for those patients who do not speak the primary language that the nurse or trainer speaks. Factors such as previous learning experiences, ability to learn and repeat skills, uraemia levels when training occurs, comorbid problems, amount of fatigue and current health beliefs may all contribute to patients difficulties in learning the information required.

The physical environment where the teaching sessions are conducted must be quiet and free from disturbance and distraction. This environment can affect both the mental and emotional environment. The nurse must build a trusting relationship and achieve the means of communicating effectively using a culturally competent approach to enhance the chance of success. There can be limited resources available concerning translation services. This being the case, the onus is usually placed upon a younger member of the family such as a son or daughter to translate for the patient. This presents its own challenges as it can be difficult to ascertain whether the patient has grasped the information or whether it is the translator (family member) only (Thomas 2009). Various educational support materials can be used to support the information process including DVDs, technical manuals and picture guides. It is important to ensure that renal healthcare providers have specialist knowledge concerning CKD and the essential skills to encourage decision-making. This can include skills in promoting and using decision aids to assist patients make decisions concerning their care and treatment (National Institute for Health and Clinical Excellence 2011).

Depression

Depression can be experienced in 2–10% of the general population; however, it is prevalent in 20% to 30% of patients on dialysis. Dobbels et al. (2010) asserts that symptoms of depression, along with specific depressive conditions, are prevalent both in patients on dialysis as well as following kidney transplant. Patients that are depressed often have reduced quality of life, further functional impairment, compounded pain, and worse concordance with medical treatments. Furthermore they have more episodes of hospitalisation and greater mortality.

Depression is diagnosed and managed only in a minority of patients, regardless of the high predominance and poor outcomes related to depression in dialysis (Holley 2013). Holley (2013) asserts that depression can impact upon the patient and his / her partner / family’s response to management and participation in advance care planning. Recognising depression in a dialysis patient consequently can impinge upon overall treatment and quality of life along with physical symptoms and reactions to dialysis care.

It is worth considering screening for depression in patients on dialysis, due to the significant effect upon patient outcomes and overall goals for treatment. There are a number of recognised validated tools that are used for screening depression including the Beck Depression Inventory (Beck et al. 1961), and the Centre for Epidemiologic Studies Depression Scale (Radloff 1977). The majority of these tools can be completed in a number of minutes and, with some individuals, this screening is an essential addition to screening for diminished cognition. The physical symptoms that are typical of depression and may be more common in patients on dialysis include reduced energy, fatigue, sleep disorders, reduced appetite and difficulty concentrating. However in order to diagnose depression these physical symptoms must be accompanied by either feelings of sadness or lack of interest (Holley 2013).

Renal healthcare providers may play a pivotal role in establishing coping strategies. One of the treatment strategies for depression is to identify previously used coping strategies. Coping strategies are usually categorised as task oriented or emotion oriented. The individual must ascertain the stressor, initiate alternative solutions and reduce the expectations in task-oriented coping strategies. Some personality traits such as extraversion and frustration tolerance are related to task-oriented coping, whilst emotion-oriented coping strategies aim to influence the emotions affected by the stressors (Yeh et al. 2009). Keskin and Engin (2011) aimed to assess depression and suicidal ideation and coping strategies with stress in patients undergoing haemodialysis therapy. They found that patients firstly selected task-oriented coping strategies, followed by emotion-oriented coping strategies and finally dysfunctional coping strategies. Both levels of depression and thoughts of suicide were high among patients who had lower education status and were receiving dialysis treatment for one to five years.

It is vital that nurses assess their patients using a holistic approach and consistently manage depression symptoms and suicidal ideation so as to improve quality care delivery. Nurses using integrated evaluation, are vital in enhancing the mental health of patients living with ESKD (Keskin and Engin 2011).

Sexuality

It has been identified that there is a high prevalence of sexual difficulties in patients with CKD, with 75% of men receiving dialysis experiencing erectile dysfunction and 30 to 80% of women with symptoms associated with sexual dysfunction. Navaneethan et al. (2010), in their systematic review and meta-analysis of observational studies, highlighted that, despite the incidence and clinical importance of this area, there were many limitations to the studies reviewed, including a poor response rate and lack of validated tools to assess sexual difficulties. There were also limited studies addressing this area in women with CKD, who were not dialysis dependent. The development and expression of sexuality is influenced by biological and psychosocial factors. Sexuality can be a challenging concept to define. It is a multidimensional concept that incorporates a wide range of enjoyable sexual activities that may or may not include coitus but also touching, kissing and embracing. It also includes body image, self-esteem, self-image and how other individuals perceive us. It can be viewed that being a sexual individual is healthy. Therefore, participating in sexual intimacy might permit a means of helping individuals who are living with chronic illness to feel ‘normal’ (Sheils 2003; Lemieux 2004; Murphy 2011b and 2012; National Kidney Foundation 2011).

There are a number of contributory factors that can lead to the development of sexual difficulties in patients living with renal disease; these are medications, alterations in hormones, vascular, neurological and psychological factors (Navaneethan et al. 2010). Table 4.1 indicates the numerous physical and psychosocial sexual concerns associated with living with renal disease. These sexual concerns do not just impact upon patients but also their spouses/ partners / significant others. It can affect their overall QoL and can impact significantly upon their personal and overall family relationships. It can also be challenging for patients who are not in a relationship and who may be looking to meet a partner, or for those that are content not being in a couple, as overall body image can be altered when living with renal disease.

Table 4.1 Male and female physical and psychosocial sexual concerns living with ESRD

Body image is intertwined closely with sexuality. Patients living with PD and HD require vascular access surgery, which can lead to scars and potential deformities. There is also the psychological impact on how patients feel with a potential foreign body in terms of a PD catheter inserted into their abdomen or living with a central venous catheter (CVC) in the neck or an AVF in the arm. Patients may feel that such vascular access is a constant reminder of living with their chronic illness. It has been regarded as the patient’s ‘lifeline’ and therefore must be monitored carefully. Concurrently patients can feel unattractive and self-conscious of these ‘lifelines’ and may alter their self-image accordingly, for example avoiding wearing short-sleeve tops or keeping their shirts or tops buttoned up to avoid showing their central lines or fistulae when out in public, in case they attract stares. They may also find it difficult to undress in front of their spouses / partners or become intimate, for fear of being rejected by them. This may be a more significant issue in patients living with PD in terms of their abdominal catheter and positioning it when trying to be intimate with their spouses / partners.

Furthermore, patients can complain of abdominal discomfort and distension with dialysate fluid, which can impair their body image with regard to clothes size having to be increased to accommodate an extended abdominal girth. This can, again, all impact on their self-esteem and overall body image, leading to patients potentially feeling unattractive, unwanted and depressed – and leading to social isolation. One could argue that there is a double-edged sword with regards to the use of some medications that patients have to take to manage their treatment, such as antihypertensive drugs, and possible side-effects such as erectile dysfunction. The use of immunosuppression medications post-transplant can result in side effects that can affect body image such as hirsutism and weight gain. Sexuality is not just relevant with patients who are receiving dialysis but also those that have chosen conservative management. It can remain an integral part of their lives and should not be assumed that it is not relevant towards end of life care. The concept of emotional connection may take priority over the physical aspect of sexuality at this stage (Murphy 2011b and 2012).

The management of these sexual difficulties includes optimising dialysis treatment, addressing dietary, anaemia, endocrine abnormalities and hyperparathyroidism issues, and reviewing drug therapy and erectile dysfunction and psychosocial issues (Levy et al. 2009). It is important to broach this sensitive subject with patients as if members of the renal healthcare team, especially nurses, do not do so there can be a strong possibility that patients will not introduce this subject as they could feel embarrassed and uncomfortable in discussing it. Renal nurses must be comfortable with their own sexuality in order to discuss this subject and put aside their own preconceived ideas. They must be good communicators and be able to recognise when some patients do not want to discuss this subject, watching for verbal and nonverbal cues and being mindful of cultural issues and the physical environment at the time in terms of privacy. Not all patients identify sexual concerns as being an issue for them; this must be also acknowledged by nurses. However, the matter should be introduced and then it should be ascertained whether this is an issue for further discussion. It is important to involve the spouses / partners as much as feasible to enable them to feel included in this process and to ascertain their experiences. Patients must be educated in how to manage these sexual concerns and where to seek further assistance and advice, as nurses are usually not trained counsellors. The renal healthcare team also needs to be educated in how to discuss this subject and to recognise that it is a real and valid concern for their patients. The renal healthcare team must recognise that this area is an intrinsic part of the patients care delivery. If it is not addressed and managed by nurses – as they are usually at the centre of the patients’ care – patients could needlessly suffer in silence (Murphy 2012).

Patient Education

Shared decision making is vital for renal care delivery. A recent group has formed in the UK representing people living with CKD, including patient organisations, nurses, physicians, experts and researchers in shared decision making. This is being assisted by the National Health Service Institute for Innovation. The aim of this group is to ensure that individuals with advanced CKD will be supported in making choices regarding their treatment. They and family members / carers they wish to include will receive information regarding every clinical appropriate option for the management of their kidney disease. There will be training and support provided to clinicians in the provision of decision support and information along with the usage of readily accessible tools (MacManus et al. 2012).

MacManus et al. (2012) assert that these aims will be readily accomplished if clinicians can take action. The actions that will make a significant change include clinicians being prepared to use decision aids when discussing patients’ treatment choices along with the provision of this information through the use of different formats. This will assist individuals with advanced kidney disease to comprehend the various clinically appropriate options available to them. Clinicians should also be able to assess the degree to which individuals are included in decision making concerning their care and to use this assessment to improve the service provided (MacManus et al. 2012). The decision aids for dialysis can be found at http://sdm.rightcare.nhs.uk/pda/established-kidney-failure-dialysis/ (accessed 20 May 2013).

The importance of early patient education cannot be underestimated. An Australian review by Strand and Parker (2012) compared the effectiveness of multidisciplinary care with traditional medical care on the progression of CKD stages 3 to 5. The multidisciplinary model of care is organised to provide individualised care to delay or prevent the advancement of CKD along with addressing the areas essential to attain a higher level of well-being or QoL for patients living with CKD. This review highlighted that education is a vital component that must be incorporated within multidisciplinary care.

There are many difficult challenges facing patients living with CKD; those patients that are approaching RRT have monumental decisions to make as to what treatment modality to opt for (Harwood and Clark 2011). All the current guidelines, including the European Best Practice Guidelines, the Canadian guidelines for CKD management and the Caring for Australians with Renal Impairment (CARI) guidelines, recommend the importance of educational programmes to enable patients to make informed choices of treatment options. Education can be regarded as the most substantial intervention enabling patients (Harwood and Clarke 2011).

Farrington and Warwick (2009) advocate that all patients should be encouraged to undertake home dialysis therapy where feasible, as part of an integrated management to RRT. They suggest that, where home dialysis is not feasible, patients and their partners/carers should be actively included in their dialysis treatment, be supported to perform as much self-care as feasible and be engaged in every facet of their treatment including the management of medication and alterations in diet and lifestyle (Farrington and Warwick 2009).

It is recommended that all patients with severe CKD (progressive stage 4 and stage 5), along with their families and carers, should be provided with a suitable education programme aimed at enhancing their knowledge and comprehension of their condition, and of the choices for treatment. Education programmes should be multidisciplinary, multifaceted, individualised to the needs of the patient, and grounded on adult learning principles. There are a number of educational methods that should be accessible, including individual conversations, group work, written resources, DVD/CDs and contact with expert patients, along with opportunities for informal follow up. The information delivered must be pertinent to the individual, with the approach, balance, speed and extent of the delivery being matched to the individual’s learning style, ability and preferences. The education programme must also include provision for the education of patients who are referred late to dialysis, and commence dialysis in an unplanned way (Lecouf et al. 2013). Prerenal replacement therapy education programmes for patients and their families and carers should be sustained into the treatment period, with the purpose of enhancing patient involvement in their own care, increasing treatment concordance, and promoting good communication and cooperative relations with caregivers (Farrington and Warwick 2009). See Chapter 6.

Self-Care

The concept of self-care is now extensively encouraged for the management of chronic illness. Some good examples of where self-care can be taught are those of home dialysis therapies (either HD or PD); where patients can learn to manage their often complex treatment. This is in contrast to many patients that attend both large centre and satellite HD units who can become very reliant on the renal healthcare providers and their partners/ families. This may be partly associated with their co-morbid conditions but may also be pertinent to the concept of ‘learned helplessness’, which was highlighted in the initial days of dialysis; this concept is, however, more pertinent currently with the advancing age of the RRT population. The concepts of enhancing both self-care and self-efficacy have become more prominent in recent years amid patients with CKD.

There are a number of dialysis units in the UK where patients who have hospital-based therapies are encouraged to take greater involvement in their dialysis from the initial diagnosis and ongoing to patients undergoing RRT (Appleby 2013). Should patients not accept the gravity and the chronicity of their illness it can lead to difficulties in accomplishing educational goals and concordance with the rigour of the treatment. Additionally, individuals learn more efficiently when information is accessible in a manner which concurs with their own learning style and choices; using a number of teaching methods should assist patients to learn (Farrington and Warwick 2009).

Cove (2012) highlights the importance of psychological preparation in the care of patients in their adjustment to major changes in both health and treatment status from stages 4 and 5 CKD, to transition to ESKD and RRT and renal transplant. The lack of psychological preparation can lead to adverse patient outcomes, including late initiation on RRT with related risks such as cardiovascular disease (CVD). Limited psychological preparation with renal transplantation can lead to acute rejection incidences along with the possible loss of the graft. Renal healthcare providers can assist patients through these challenges; however, there are patients that struggle. Adapting to their disease progression may require more intensive treatment (Cove 2012). The transtheoretical model of behaviour change or stages of change model ascertains a person’s willingness to move towards healthier behaviour through a progression of psychological stages (see Box 4.1).

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