When considering the impact of CKD on a person, it is helpful to understand the multiple factors which can interact to affect a person’s functioning (Table 5.1). Using a biopsychosocial approach can be useful to appreciate the interaction of biological, psychological (which includes thoughts, feelings and behaviour) and social factors, which can all play a significant role in the context of disease or illness (Engel 1977).

Why are psychosocial issues important?

Psychosocial issues are important not only in relation to maintaining a good quality of life. A growing body of evidence cites mental health as a predictor of patient outcomes in people with CKD (Hedayati et al. 2010, Tsai et al. 2012). People who have clinical depression prior to starting RRT have poorer outcomes and reduced long-term survival. This is likely to be in part related to the impact on health-related behaviours such as decreased self-care and reduced treatment concordance, but it may also be due to stress-mediated changes in physiological function. The National Institute for Health and Clinical Excellence (NICE) chronic kidney disease quality standard states that:

People with established renal impairment should have access to psychosocial support (which may include support with personal, family, financial, employment and/or social needs) appropriate to their circumstances (NICE 2011).

Increasingly, renal units have access to specialists such as clinical psychologists, counselling psychologists, health psychologists, counsellors and social workers, and they have an important role in supporting patients. However, the challenging psychosocial issues faced by people with CKD are common, and not all of these require specialist psychological intervention. It is important that psychosocial issues are understood by everyone who has a role in supporting the patient and that they are able to recognise distress and offer appropriate emotional and practical support, signposting and/or referring to other services as required.

Coping with diagnosis and encouraging acceptance

Receiving a diagnosis of CKD can be a difficult experience, and patients’ responses can vary quite widely due to a number of factors. Some people have known about their kidney problems for a long time, and the progression of their condition and subsequent preparation for dialysis may be something they were expecting. However, it can still be shocking – they have been putting the possibility out of their mind and never believed it would happen to them. For those people unaware of having kidney problems, either because they have residual damage from an acute kidney injury or because they have received their diagnosis of CKD at stage 5, it can come as a significant shock.

People may find it difficult to become ‘a patient’ and particularly resent the loss of control they have over certain aspects of their care. Some people find inpatient hospital stays particularly difficult and resent the lack of privacy and the feelings of dependence on others.

Stages of acceptance

Patients will often go through a range of emotions as they accept their diagnosis, and it can be helpful to view this as a normal response to any loss or significant life event. People often go through a number of stages such as shock, denial, anger, bargaining, depression, and then work through their feelings and reach a stage of acceptance before moving on to plan for the future (Kübler-Ross 1969). Progress through these stages is not always strictly linear. It is beneficial to normalise how people are feeling about their diagnosis and to give them permission to talk and express their feelings. Listening and watchful waiting are helpful, as an adjustment reaction may progress into depression, particularly where people already have increased background risk factors (previous or current mental health issues, low social and family support, decreased activity or occupation). Patients who have an acute presentation of CKD and require an immediate start to dialysis are also at an increased risk of psychological difficulties. They have not had the educational, psychological and practical preparation and may require additional support to accept their condition.

Coping styles

A number of factors influence the way people cope with their illness. These include their personality, their beliefs about themselves, their condition, and their medical care. Self-efficacy, health locus of control and illness representations can also affect the way a person manages his or her health condition. For example, people who believe they are capable of managing their symptoms, take responsibility for their treatment and believe that people can live well with CKD, are likely to cope better and be less distressed.

In general, adjustment tends to improve over time, although some people adopt coping strategies that may not appear overtly helpful. For example, they may deny they are unwell or refuse to make a decision about treatment (Box 5.1). On one level, these strategies can actually be protective, enabling a person to continue with everyday life, but they can become counterproductive. When someone gets stuck with a particular emotion (e.g. anger) and refuses to engage with the medical team, or if a patient’s behaviour is potentially harming his or her health, it may indicate a need for additional specialist support.

Encouraging self-management

Encouraging patients to self-manage their health issues will also help them to accept their condition (Table 5.2). There are a number of prerequisites to self-management, particularly access to information and the opportunity to be involved in shared decision making about care. Encouraging patients to access their blood test results, monitor their blood pressure at home, and engage in positive health-related behaviours can increase their personal sense of control over their condition. It can be difficult to influence health-related behaviour change if a person does not see that an issue exists – e.g. ‘I don’t have a problem with my diet.’ Sometimes a patient will have a specific concern, and improvements in this area may encourage them to be more open to addressing other health-related issues and behaviour.

Box 5.1 Patient story: denial and acceptance

Sarah was referred to the renal unit and was diagnosed with CKD stage 5 following a medical assessment for a new job. It came as a complete shock to her and she reported that she did not feel unwell. She questioned the blood test results and felt that ‘they must have made a mistake’. After a number of appointments with a pre-dialysis specialist nurse she agreed that she would have haemodialysis ‘if the need arose’ but refused to have a fistula for access. She then started to miss follow-up clinic appointments.
Sarah was referred to the renal counsellor and she agreed to attend. She talked about how hard it had been when her father died in hospital. She had always avoided hospital and was so scared that she would die that she could not even contemplate that the diagnosis could be true. Once she started to talk about her fears she became very distressed. Eventually she was able to re-engage with the medical team and agreed to the fistula creation. She continued to deny that she was feeling unwell until she started dialysis.
Sarah used denial to enable her to continue with everyday life and avoid feeling distress, but with support she was able to accept the need to prepare for treatment.

Table 5.2 Key points: coping and adjusting to life with CKD.

Finding it difficult to adjust to a diagnosis may be a normal reaction. Patients should have the opportunity to talk about how they feel, and should be reassured that their responses are normal.
People adjust differently to their diagnosis and treatment regimes. Those with a higher risk of adjustment difficulties may need specialist support.
Supported self-management often improves patients’ knowledge and willingness to self-care, as well as helping them to accept their condition and feel more in control.

Some patients find group programmes helpful. For example, programmes such as the Expert Patient Programme run over six weeks and include topics such as dealing with pain, tiredness, coping with depression, relaxation techniques, exercise, diet, communication and planning for the future. Although not specific to kidney disease, much of the material is appropriate and is available in face-to-face groups and online. (Note, however, that when encouraging patients to access general self-help materials it is important to warn them that dietary advice will not be specific to their condition and they should continue to follow the dietary advice of the renal team).

Box 5.2 Patient story: improving self-management

Peter had developed CKD stage 4 as a consequence of type 2 diabetes. He openly admitted that he had never managed his diabetes particularly well as he had never really accepted his condition. He found it difficult to talk about CKD and did not ask any questions in appointments with the medical team.
When asked about his health concerns by his general practitioner, he said he wanted to lose some weight but because he was so tired he had reduced his physical activity and was not doing any exercise. He said he often forgot to take his blood pressure medication. His practice nurse explained he could still exercise, and he started to walk more and swim twice a week. He also started to monitor his blood pressure at home and his blood pressure medication concordance improved. Following improvements in his overall health, he asked his GP to refer him for self-management support to improve the control of his diabetes, and he started to engage more actively in his renal clinic appointments.

Fatigue is a significant symptom of CKD and often results in people reducing their physical activity levels (Box 5.2). This can become a vicious circle which leads to decreased physical and emotional health. The evidence supports the positive benefit of exercise on both physical and mental health, and referral to a community exercise programme to enable people to increase their regular activity may also be helpful (Heiwe & Jacobson 2011).

Impact on family, social life and work

Family life

CKD can have a significant impact on a person’s family relationships. The strains of ill health and the demands of dialysis treatment (whether home or hospital-based) can negatively impact on family life. Social support, and particularly the support from a partner, has been shown to be a protective factor and is linked to increased quality of life and improved mental health. Those people without a partner may have concerns that their condition will adversely affect any future relationships. CKD can bring additional stress to current relationships as there may be significant changes to the roles people assume within the relationship. For example, a person with CKD may no longer be able to contribute to the family income or may find that their partner has become their carer. Their partner may have to take on additional activities at home (e.g. housework or childcare), and individuals may struggle with feeling dependent and a burden on their family (Box 5.3).

Box 5.3 Patient story: family life and psychosexual difficulties

Helen was married with one child and had recently had a transplant. She was finding it difficult to recover and felt guilty that her husband undertook the majority of the housework as well as working full-time. She also felt very guilty about the impact of her illness on her child and she worried about what would happen to her family if she died prematurely. She felt very unattractive because of her surgical scars and reported that she had not had sex in the last year, mainly because of tiredness. She said her husband was accepting of this but she was concerned that he would leave her for someone else. Her friends were mostly related to her previous employment and she rarely saw them any more. She generally spent most days at home watching TV and wished she could return to the ‘person she was’.
Helen’s situation illustrates the complex relationship between psychological, social and physical problems. Helen agreed to see a counselling psychologist with her husband. The psychologist worked with her to increase her activity and to emotionally and cognitively accept the changes which had occurred. She talked about her fears for the future with her husband, and they engaged in some psychosexual therapy which improved their relationship. At discharge Helen had started some voluntary work and felt she was contributing more to their family life.

Home dialysis may offer an improved quality of life but may incur an additional burden on families, who may also need practical and emotional support. Health problems can limit a family’s activities and impact on opportunities for holidays. It can be helpful to encourage families to continue with these activities where possible. It is important to emphasise that though it may take more planning, people with CKD are often still able to travel and should be encouraged to do so, as this provides a break for the family as well as themselves.

Patients with children sometimes struggle with changes in their parenting role. They may feel guilty about the impact of their health on their children, particularly if they have an acute admission. In some areas there are young carer support groups which provide additional help for children with a parent with CKD.

Sexual dysfunction is common in people with CKD, but patients often find it difficult to raise the subject with health professionals. Patients should be encouraged to broach the subject during appointments with their specialist team or general practitioner. Both men and women describe a number of problems including a decrease in sexual interest and impotence. It is likely that a combination of organic causes, treatment effects and psychosocial factors contribute to the aetiology of sexual dysfunction. It is important that underlying health causes are identified and patients are offered information, treatment options and psychosexual counselling if required.

Social support

Kidney disease can affect friendships and social relationships. People with CKD may be less able to engage in social activities and may find that friends do not understand the implications of their health condition or have unrealistic expectations. A number of people talk about finding it more difficult to go out because of increased fatigue, and find that fluid and dietary restrictions limit social activities such as eating out, leading to an increased sense of isolation. People value the support of their friends, and maintaining relationships can be very beneficial.

There is evidence that social support can act as a buffer against stressful events and also appears to impact on health outcomes including quality of life and treatment concordance. Social support has been linked to higher rates of survival in CKD, which underlines the important role it has (Cohen et al. 2007). There are a number of possible mechanisms to explain the role of social support, including improved perception of quality of life and improved concordance with treatment. Patients can benefit from peer support from other people with CKD, and some renal units are developing more formal approaches to training for peer support volunteers.

Work and activity

Work and activity is beneficial for both emotional and physical wellbeing (Waddell & Burton 2006). Work provides structure to a day and increases social interaction, and in addition to financial benefits it can also improve self-esteem and confidence. Many people with CKD work full-time, but this may come at a cost, with limited energy for other family and social activities. Unfortunately people with CKD can find it difficult to continue working in their current role due to periods of ill health or high levels of fatigue. A person who is struggling with work needs to be realistic about the type of work and the hours they can cope with. This is particularly an issue where people are trying to maintain work around dialysis treatment. People with CKD may not view themselves as ‘disabled’ and will often be unaware that they are protected in law from discrimination in the workplace. Employers should make reasonable adjustments for the needs of people with CKD, although often both employers and employees are unaware of the options available to help someone to continue working. Depending on the circumstances, there may be opportunities for part-time work, flexible start and finish times, job-sharing, home working or self-employment. People are often anxious about raising their health problems with their employers and may need support and encouragement to do so. Additional support and advice on the options for staying in work and the benefit entitlements for those leaving work can be accessed via a renal social worker, a disability employment adviser based in a job centre or through welfare rights services.

Stopping work through ill health or retirement can bring about significant social and psychological changes, and it can be helpful to encourage people to adopt or maintain activities through which to structure their day. Hobbies and activities may need to change to accommodate physical and practical limitations. Some people may reluctantly have to reduce or stop the activities they are unable to participate in and may need support and encouragement to develop new interests. Educational courses, retraining and voluntary work offer opportunities to maintain activity and develop new skills (Box 5.4).

Box 5.4 Patient story: the impact of work and social activities

Peter started on continuous ambulatory peritoneal dialysis (CAPD) and had recently stopped working because of his health problems. He used to have a very active social life mainly orientated around the pub. Since starting CAPD he had stopped going out as he couldn’t drink as he had before. He was very concerned about his finances and worried that he couldn’t pay the bills.
Peter was referred to see a social worker, who assisted him with making applications for benefits and encouraged him to engage in more activity, and he decided to start gardening at an allotment. He joined a gardening group and returned to part-time work. At a follow-up appointment, Peter was socially very busy at weekends and he was considering increasing his hours at work.
This example highlights how important social relationships, activity and work are in contributing to a person’s sense of motivation and wellbeing.

Financial issues

Changes in health often impact on a person’s financial situation. Older people may express concerns about applying for support and feel that they do not deserve help. Some people will not have any experience of applying for state benefits, and they may need support from a renal social worker or signposting to welfare rights services which can help with their applications. Patients do not always qualify for, or may be refused, support, and in these circumstances specialist welfare advice may be able to assist. People who have significant social care needs can request an assessment from social services both for themselves and for their carer.

Young adults with CKD

Young adults with CKD have been identified as a vulnerable group at risk of poor treatment outcomes. There has been increased recognition that having CKD as a young adult impacts greatly on many areas of life, including education, employment and relationships (Box 5.5). Coping with kidney disease may impact on the social development of young adults and interfere with their progression through the normal developmental stages of adolescence. Some young adults will be faced with leaving the relative security of a paediatric service and transitioning to an adult service where they will become aware that they are different in age to the majority of the adult renal population. Young adults who present to the adult service for the first time with CKD have to adjust to their diagnosis and treatment as well as assess the impact on their life plans. Although young adults with CKD are a small population they may need specialist psychosocial support with a wide range of emotional and practical issues. For example, a young person who is finding it difficult to manage their own medication after a transplant could potentially lose their graft if they are not supported to better manage their treatment (Table 5.3).

Box 5.5 Patient story: supporting young adults with kidney disease

Basim was diagnosed with CKD stage 5 at age 17. He transferred from paediatric services to the adult renal unit just as he started dialysis treatment (CAPD). He had a good attendance record in paediatrics but often missed appointments in the adult unit. He said he was too busy to make appointments to see his specialist nurse, and staff were concerned that he was not adhering to his treatment schedule. At his next clinic appointment his kidney consultant broached the subject with him. He said he was undertaking his treatment but he found it very difficult to fit it around his apprentice job and he was anxious about taking any time off work. He said he found it difficult to remember appointments and it had been easier when his mother had organised everything for him. He felt very alone, because no one else in his circle of friends had CKD.
Basim is an example of a young man who is struggling to adjust to living with and self-managing a chronic health condition. He is feeling socially isolated and is finding it very difficult to access support. Basim would particularly benefit from services targeted at young adults, and from opportunities to meet other young people with CKD. He needs support to develop the skills to enable him to manage his current treatment and increase the likelihood that he will be concordant with future treatment options, e.g. a transplant.

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