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Managing the psychological effects of long-term conditions

Chronic physical illness is nearly always associated with psychological and emotional effects, regardless of the pathology of the underlying condition.1 The implications of living with a chronic illness require us to think about and ask the patients how it feels from their perspective.

The pressure to meet targets for the care of some of these conditions, however, may lead us to focus on physical measures at the expense of psychological assessment and support. Although inclusion of the standardised depression questioning of patients with coronary heart disease and diabetes was a step in the right direction,2 it could have become a tick-box exercise if clinicians did not feel able to address the problems that were subsequently revealed.

As healthcare professionals (HCPs), we may forget that the 'patient' we see in our setting has a complex emotional and psychological history and social context, which will affect how they respond to the demands of managing that illness. Social support, including family, friends and connections with a wider community, is known to have a significant effect on coping ability and recovery from illness.3

Many chronic illnesses do not cause obvious changes to a person's appearance, which means that other people may express surprise that they look well or 'normal', when the person themselves feels very unwell and afraid. It can then be difficult for that individual to be open and honest about how they are feeling. At other times, an ill person who looks well may be relieved that they can put on a mask for a short time and act as they used to or as others expect them to.  

Rather than visible changes with chronic illness, it is more common to have feelings related to altered ways of functioning and relating to other people.4,5 Relationships with other people may change completely and for ever, particularly if other people find it difficult to relate to the person due to their negative perceptions of the illness.  

The changes brought about by illness often involve loss and an associated grieving process that may or may not end in acceptance. This grieving can be ongoing if everything suddenly seems different for the person, even if it is not apparent to other people. The losses are often related to changes in physical function or role, including washing and dressing independently, walking, driving, or being able to work.  

Engaging with patients

HCPs may avoid asking about patient's feelings for a number of reasons, including their own embarrassment or limitations in what they believe they can offer in terms of support. In reality, we can do a lot with just a little time, expressing concerned interest and offering a listening ear. We may feel a responsibility to solve any problems our patients have, but in many cases the patients do not expect us to solve them. However, by being heard and understood, they may feel a great sense of relief that could have a significant positive effect on their physical and emotional wellbeing. 

Patients may feel a loss of control - over normal functioning and many aspects of their previous lives - and their contact with the health service can disempower them even further.6 They are likely to be feeling afraid, sad and angry, which they may express and acknowledge to differing degrees depending on their personality, current state of illness, and interest from other people.  

We should be aware of how these strong emotions may be present and how they may affect the patient in their interactions with us. If we are able to ask direct questions about how they are feeling or what is concerning them most, we may be able to help them express themselves and reduce the emotional intensity of their current state. By listening carefully to what they say and to their body language, we can reflect back what we are hearing or seeing. They may have fears that they think are unspeakable, and we should let them know they can share them with us.

If it seems difficult to approach an issue directly, we can use the 'my friend John' or 'yeah, me too' technique, which refers to the fact that others also suffer from a particular problem.7 For example, we can say that it is common for people with diabetes to feel depressed, particularly when their blood glucose levels are high, or that most people with respiratory conditions feel anxious about their breathlessness at times, which can make symptoms worse. It is a way of destigmatising their situation or offering a less direct challenge to someone who may find it difficult to acknowledge or express how they feel.

Patients may blame themselves for their condition, which is likely to increase their perceptions of feeling stigmatised.3 It is vital that while supporting any positive changes, such as stopping smoking, we do not contribute to that blame, but rather accept the person for who they are and try to support them to make adjustments to their lifestyle where possible. It is easy to judge and we should be aware of how it can adversely affect patients. We should always try to be compassionate and imagine ourselves in their situation.

Cognitive changes such as memory loss can occur with chronic conditions such as diabetes,8 or treatment such as chemotherapy, but are not always widely acknowledged, even by clinicians. Chronic pain and debilitating or worrying symptoms, such as breathlessness, dizziness and fatigue, can also cause significant changes to how the person feels in both the short and long term and will affect how they relate to others, including those in a healthcare setting.  

They may try hard to conform to our expectations of them so that they don't upset us or the system, which may be or seem to be a matter life or death. In doing so, we miss the chance of understanding their feelings and answering questions that could help us to provide better care. We can easily perpetuate misunderstandings and make assumptions about what patients understand if we don't clarify it with them.

Helping patients who feel stigmatised

On the other hand, patients may not conform at all to the system and not behave in a way that is expected of them in the sick role.9 As HCPs, we should be mindful of how strong emotions make us act differently, and not judge someone's apparent lack of interest or compliance as such, but try to see behind it the fear, anger, sadness or other feelings.

In all of our interactions with patients, the most important thing we can do is to convey genuineness and respect towards them and their point of view. We must consider it our priority to validate and acknowledge their concerns, feelings and themselves as an individual. We should never dismiss what they are saying, even if we want to help them consider alternative perspectives. Validation may involve acknowledging their need for support and allowing them to show vulnerability and distress in a safe environment. It is an important part of enabling people to change as well as helping them to manage the emotional and psychological impact of long-term conditions.

Finally, improving practical help and physical health can also help emotional and psychological difficulties - by using some kind of aid or adaptation the patient may be able to function and therefore feel better. By helping patients to understand and control their physical symptoms, such as blood glucose levels in diabetes and breathlessness in heart failure and respiratory conditions, their wellbeing may improve in both physical and emotional ways.

 

Conclusion

Patients with any type of chronic condition are likely to feel afraid some, most or even all of the time and this will affect how they behave when we see them. We can help by building and sharing good rapport so they feel able to express themselves in a safe and accepting environment. We should be aware of the grief associated with the losses incurred by chronic illness, that this may not readily be resolved and may last a long time. We do not need to feel responsible for solving their problems, but rather by listening in a caring way, understand that we may help, enable the healing and learning process that occurs naturally within the person themselves.

 

References

1. Kelly MP. Chronic illness, labelling and stigma and pre diabetes. The Centre for Public Health Excellence, London: NICE; 2010.

2. Quality and Outcomes Framework guidance for GMS contract 2012/13.

3. Greenberg TM. The Psychological Impact of Acute and Chronic Illness. San Francisco: Springer; 2010.

4. Strauss A, Corbin J, Fagerhaugh S, Glaser B, Maines D, Suczec B, Wiener C. Chronic Illness and the Quality of Life, 2nd ed. St Louis: Mosby; 1984.

5. Millen N, Walker C. Overcoming the stigma of chronic illness: Strategies for 'straightening out' a spoiled identity. Sociological Sights/Sites, TASA 2000 Conference, Adelaide: Flinders University December 6-8.

6. Coulter A. Engaging Patients in Healthcare. Maidenhead: Open University Press; 2011.

7. O'Hanlon B, Weiner-Davis M. In Search of Solutions: A New Direction in Psychotherapy. London: WW Norton & Company; 2003.

8. Roberts RO et al. Association of duration and severity of diabetes mellitus with mild cognitive impairment. Archives of Neurology 2008:65;1066-73.

9. Parsons T. The Social System. Glencoe IL: The Free Press; 1951.