Julie Highfield, Carolyn Evans, Sarah Cook,
Renal failure is a long-term unremitting condition, with treatment that offers health maintenance rather than cure, thus there are potential psychological and social consequences (Christensen, 2002). On becoming a renal patient, the individual is faced with the challenges of coping with treatment regimes and restrictions on quality of life.
In addition, an individual's experiences loss and change on multiple levels - eg health, social functioning, role, sexual functioning, threatened personal control. These changes need to be incorporated into one's sense of self, and often leads to changes in identity (Petrie, 1997). Individuals may become resentful of the enduring nature of a disease which is intangible to others (Seabrook, Highfield & Neal, unpublished).
The unrelenting and long term nature of the disease and intensity and duration of treatments, mean that these challenges persist for the rest of the person's life. It is not surprising that research indicates depression is common in renal failure - and hospitalisation for psychiatric disorders is high compared to other health conditions (Kimmel, 1998). Hedayati (2012) has reviewed the treatment of depression in ESRD.
There has been an increasing acknowledgement for the role of Clinical Psychology and psychological therapies for renal patients.
When an individual is diagnosed with a chronic health condition, there is a psychological process that occurs as the person makes sense of the condition, its meaning to them, and integrates these challenges into their identity and life
This is often likened to the grieving process, for which people cycle through a number of stages, including:
- Shock and numbness; which is often associated with denial and avoidance
- Anger and frustration; which is associated with questioning and making sense of the illness, and bargaining
- Anxiety; about procedures, about the future, about what this will mean for them
- Depression; as they face the losses between the life intended and the life they now face
- Acceptance; usually people come to a space of acceptance
For a good theory of grief, see books by Kubler-Ross.
Just as with all grief, nobody can set a time limit on 'normal' grief, but as long as a person is progressing through the stages, this is a good indication that they are undertaking a normal adjustment process. Remember with our renal patients, at different stages of their illness, they have new things to adjust to, and will go through an adjustment reaction each time
"I sometimes think doctors are trained to treat crying as if it were bleeding: apply direct pressure until it stops“ (David Spiegel, Stanford Psychiatrist, 1995)
The feeling and expression of emotion is part of the process and should be encouraged as it enables the grief to progress. It is when an individual becomes stuck in circular emotions that cannot be fully expressed or soothed, that something untoward is occurring - and professional psychological assessment and intervention is required
Depression and Anxiety
Some studies suggest that 20-30% of the ESRD population suffer from depression, but that this is often undiagnosed or under-recognised (Chilcot, 2008). However, there is little research investigating depression in pre-dialysis patients to provide meaningful comparisons (Kimmel, 2002).
Kuntz (2011) challenged this view. This study examined rates of psychological distress using the Patient Health Questionnaire (PHQ) in a sample of 518 ESRD patients at the time first contact with a transplant centre. In this sample, 15.1% of patients demonstrated symptoms consistent with a depression and 7.6% of patients experienced anxiety. These rates were lower than expected perhaps due to selection bias.
Psychological distress impacts upon a patients ability to manage their condition:
- Poor motivation
- Temporary cognitive issues
- Non compliance can be a way of self-destructing, arising from hopelessness (“I do just enough to stay alive”)
- Fears around treatment
- Panic; misinterpret anxiety symptoms as coming from the body, associate with treatments
- Past trauma; beliefs in catastrophic nature of treatment
- Refusal to accept things
- Resistance to treatment
Fear of rejection, paradoxical loss post-transplant and psychological integration of the new kidney are the most common causes of distress in transplant recipients (Baines, 2004). Previous dialysis,and co-morbidities, cause concern about the predicted outcome and quality of life (Griva, 2002).
Some patients struggle to adjust to life post-transplant, particularly if their social and occupational circumstances are poor (they can lose their benefits).
Although treatment is life-sustaining, this dependency on a time-consuming treatment often results in individuals feeling they have little space for living a ‘normal’ life (Hagren, 2005)
One of the difficult tasks that renal patients face is the restriction that dialysis, fluid and dietary control places upon their life. Nagle (1998) found HD patients report a sense of ‘abiding’ with technology, as well as dealing with the losses it represents, and named this ‘reluctant partnering’.
Research shows that the feelings of restriction and a lack of control are a common experience of HD patients (Smith 1996, King, 2002; Al-Arabi, 2006). Perceived control over health care has an impact on psychological adjustment to diagnosis, with a sense of control resulting in a balance between positive and negative affect (Bremer, 2009).
Factors that Shape Patient Self-management
1. The patient’s beliefs about themselves within illness:
- Self-efficacy: “Am I capable of managing my illness?”
- Health locus of control: “Am I responsible for the management of my illness?”
- Motivation for self care: “Do I feel I can look after myself? Am I ready to take on my treatment regime?”
- Beliefs about self. Predictor of self-sabotage: “Am I an okay person deserving of treatment?”
2. Coping style; approach vs avoidance
3. Personality; “conscientiousness”
4. The patient’s relationship with the healthcare system
5. The patients social and environmental factors
6. Long term mental health problems:
- Depression, anxiety and despondence can have far reaching consequences for engagement with services, especially adherence to treatment (Christensen, 2002).
- Smoking and alcohol; often used as poor coping methods for mental health
- Risk of relapse may be increased by the stress of transplantation
- Will mental health problems endanger survival of a transplant graft?
- May affect understanding, resilience, ability to comply
- Risk of self-harm
- Long term lithium for mood disorder
- Recurrent mental health problems
- Poor conscientiousness
- History of self harming behaviours
- Current drug or alcohol abuse
- Current severe mental health problems or personality disorder
- Low social support
- Consistent non-compliance with treatment for diabetes or hypertension
- Non-concordance pre transplant (including missed appointments)
- Poor psychological resilience
- Avoidant coping style
- External locus of control; believing others are more responsible for health
- History of poor self care and poor health behaviours
- Poor self efficacy
- Trauma history
- Poor relationship with the team
Transplantation is demanding and invasive. It requires psychological resilience, good social support, and abstinence from poor health behaviours. The desire to have a better life on transplant is not always enough to ensure adequate and sustained self-care.
A study of 180 renal transplant patients indicated that early post Tx non-compliance to immunosuppressants predicts long-term non compliance (Nevins, 2001). A further study of 100 renal transplant patients showed non-compliance to be associated with particular medication, patient knowledge and comprehension, patient desire or motivation, and patient-health care worker relationships (Chisholm, 2004).
Language of Concordance
When trying to encourage a patient to engage in self-management, language is important.
- Concordance; the patient follows the treatment regime as negotiated between the patient and the clinician
- Adherence; the patient follows the treatment regime as agreed with the clinician
- Compliance; the patient follows the treatment regime as set and prescribed by the clinician
- Optimise patient understanding through focussed education
- Assess for adherence routinely
- Praise adherence
- Address issues related to specific medications – willingness to explore alternate drug therapies
- Engage patients as partners in their care
- Optimise limited time spent with patient: Consider adjusting frequency of clinic visits for at risk patients
- Recognise importance of continuity of care
- Recognise the significance of the patient/provider relationship
- Address overall quality of life issues
Clinical Psychologists are trained for a minimum of 6 years, with a three year Bachelors degree in psychology, and a three year doctorate in Clinical Psychology. Clinical Psychologists apply psychological theory in the assessment, formulation, and intervention of psychological problems. Unlike most counsellors, psychologists will tend to use more direct therapeutic approaches, and in addition provide consultation, training and supervision to staff.
Renal Clinical Psychology is a growing area, with over forty psychologists in the UK now integrated into renal services.
Cognitive and behavioural therapies (CBT) are one of the NICE recommended treatments of psychological disorders such as anxiety and depression. The basic premise of CBT is that the way a person thinks impacts upon mood and behaviour, and this can maintain and exacerbate psychological difficulties.
For example, patients on maintenance hospital-based haemodialysis treatment regimes may have thoughts such as "There is little hope for the future", "I am less of a person with renal failure", and "Haemodialysis stops me from doing the things that I want to do". CBT is often helpful in identifying and challenging these beliefs. CBT and supportive therapy have been shown to be more effective than a no-intervention control group in reducing depressive symptoms in ESRD (Hener et al, 1996). In addition, developing problem solving and improving self-efficacy has been found to improve depression (Leake, 1999).
Providers of psychological interventions may find themselves challenged when a person's thinking about the disease and treatment seem accurate, and are therefore less amenable to traditional CBT approaches. The focus for a psychological intervention may shift to enhancing resilience in living with a condition, and emotional acceptance of its day-to day challenges.
Top Tips: Psychological distress impacts upon a patient's ability to manage their condition. They may benefit from referral
- Renal failure is a long-term unremitting condition, with treatment that offers health maintenance rather than cure; thus there are potential psychological and social consequences
- When patients are newly diagnosed, or go through a change in their condition (eg transplant back to dialysis), there is a process of psychological adjustment that occurs, rather like the grieving process
- 20-30% of the ESRD population may suffer from depression, but this is often undiagnosed or under-recognised
- Hospitalisation for psychiatric disorders is high compared to other health conditions
- Psychological distress impacts upon a patient's ability to manage their condition, and can interfere with concordance/adherence
- Transplantation is demanding and invasive. It requires psychological resilience, good social support, and abstinence from poor health behaviours. The desire to have a better life on transplant is not always enough to ensure adequate and sustained self-care
- We are all responsible for the psychological support of renal patients, but referral on for specialist intervention may be required
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A good review article
Griva K et al. Quality of life and emotional responses in cadaver and living related renal transplant recipients Nephrology Dialysis Transplantation; 2002; 17(12): 2204-2211
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