Lecture 6: Psychological consequences of chronic disease

This lecture is mainly based on tertiary prevention. Tertiary prevention is prevention aimed at those who have already gotten a diagnosis of a disease.

The lecture starts with two case studies. The first case study is about David. He’s 52 years old and had a sudden/unexpected myocardial infarction 6 months ago. His lifestyle is reasonable, he works as an accountant and makes long hours, causing him to feel stressed often. Ever since his first, he has been anxious about getting a second myocardial infarction. Therefore he is afraid to do sports and his stress-management is poor.

The second case study is about Anna. He’s a 19-year-old girl who has had type 1 Diabetes since the age of 4. Her self-management used to be good and she has a high blood glucose. She studies Biology and has a dynamic social life. She is afraid to tell others about her diabetes because she’s afraid of being seen as different. Her self-management has worsened, mainly because of her avoidance.

For both patients it is important to gain (more) information about their backgrounds, network, friends, family, stressors and their history, to know whether these factors play roles in their self-management and coping.

What is the difference between chronic disease and chronic illness?

A chronic disease is long in duration, often with a long latency period and protracted clinical course. The diagnoses of chronic diseases are categorised in the biomedical system. Examples of chronic diseases are diabetes, HIV and cancer.

A chronic illness is an experience of long-term bodily or health disturbance. Examples of chronic illnesses are chronic headaches and chronic pains.

25% of the people get at least one diagnosis once in their lives. When people grow older, more diagnoses are likely to occur. 25% of the people with a chronic disease have some type of activity restriction, for example in mobility, personal care, work or schooling.

Having a chronic disease of chronic illness is a challenge for many: for individuals, for caretakers, for partners, relatives and friends and for society. These challenges occur on different levels. Challenges related to psychological status are mailaise, fatigue, pain, weakness, loss of appetite, loss of libido and dizziness. Challenges related to cognitive functioning are the inability to concentrate, forgetfulness, difficulty with higher reasoning tasks, word-finding difficulty and cognitive overload, which occurs due to the body which keeps telling the brain to be aware, because the body is in pain. Your brain has to ignore these messages because it cannot do anything about it. Challenges related to psychological functioning are emotional distress, depressive feelings, worry, ruminantion and anxiety, panic, distortions of self-identity, self-image and self-esteem, hopelessness, frustration, irritability and loneliness and detachment. Challenges related to social context are behavioural inactivity, unpredictable nature of diseases, social interactions, resistance to socialising, isolation and lack of understanding from friends and family.

A video of a woman named Teresa is shown. Teresa was diagnoses with kidney reflux a couple of years ago. This is a reflux of urine to the kidneys, causing the kidneys to get scarred. Teresa experienced feelings of fatigue, nausea and a loss of appetite before she had a transplant. Before she had the kidney transplant she was in denial, but she felt much better after her first transplant. She felt anxious about the dialysis and transplantation at first and she had difficulty with changing her lifestyle and with communicating with others, since she did not want to bother anyone.

What is medical psychology?

Medical psychology is the science that studies cognitions, emotions and behaviour of people in a medical context. Two main parts of this science are diagnostics and treatment. With regard to diagnostics, psychological aspects of medical situations are explained. Why are people behaving the way they behave? Why does this person (not) take their medication? Why does this person still smoke?  Treatment is about changing psychological aspects of the medical situation.

Medical psychology is about complex interactions between physiological symptoms, cognitive symptoms and emotions. In medical psychology there is an overlap between somatic symptoms of the disease, side effects of medication and somatic symptoms of depression/anxiety.

A video is shown in which a guy named Seb talks about his MS. MS is a disease in which the myelin sheaths are destroyed. There is a relapsing remitting type and a progressive type. Currently, there is no cure for MS. Medication (corticosteroids) suppresses attacks and symptoms. There are various types of medication for the progressive type and there is continuous medication for the relapsing remitting type and specific medication for relapses. Seb ignored the symptoms for a while, even though he felt worse and worse. He was somehow relieved when he got the diagnosis at first, but after a few days he developed a dark outlook on the future and he gave up on his career ambitions.

According to the lecturer, acceptance is very important during diagnosis and treatment. She sees acceptance as a combination of acknowledgement of the negative of the disease and acknowledgement of still being able to live a full, rich, good life.

What is Quality of Life?

According to WHO, the definition of Quality of Life (QoL) is the individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. This definition seems a bit old-fashioned, since it depends on the context of culture. Your quality of life is compared to those of others in your society.

Huber sees QoL as adaption and has formed a new definition: Health as the ability to adapt and implement their own control, in light of the physical, emotional and social challenges of life. According to Huber, the difference with the WHO definition is that this one emphasises the potential to be healthy, even when there is illness. Still having personal growth and development and fulfilment of personal goals in life.

On slide 37 a graph is shown in which is shown which diseases are associated with poorer or better quality of life.

There are different factors which influence the quality of life

• • Disease characteristics
    
    • Symptoms
    • Time-line
    • Causes
    • Consequences
    • Controllability
  • Treatment characteristics
    
    • Invasive procedures
    • Medication
    • Side-effects
    • Hospital admission
  • Demographics
    
    • Age
    • Gender
    • Culture
  • Psychosocial factors
    
    • Coping
    • Social context
    • Personal goals

What are some models with regard to stress, coping and adjustment?

In the stage models of adjustment, it is said that loss of health is comparable to losing a loved one. In both processes you move through stages from grieving to acceptance/adjustment. An example of an adjustment model is by Morse & Johnson. Their stages are 1. Uncertainty, 2. Disruption, 3. Striving for recovery and 4. Restoration of well-being. There is some criticism on these models too. They would create (false) expectations of responses to illness, because everyone experiences those illnesses differently and some people may never reach adjustment/recovery. These models also fail to consider the co-occurrence of elements from different stages and they fail to incorporate that individuals will move backwards and forwards between stages.

The central tenet in the stress and coping models is the interaction between persons and situations. According to these models, adjustment is a match between demands and resources. Examples of these kind of models are the Cognitive transactional model of stress and the stress and coping model, which are both discussed in lecture 4.

Stanton et al. have developed an adaption model. This model is about the conceptualisation of adjustment and according to this model, adaption/adjustment comes in stages: 1. Mastery of adaptive tasks, 2. Absence of psychological disorders, 3. Presence of low negative affect and high positive affect, 4. Preservation of functional status, 5. Satisfaction and wellbeing in various life domains (QoL).
Taylor’s cognitive adaptation model is about searching for meaning, benefit finding and adjustment and gaining sense of control. 50-80% of the patients report to perceive some benefit in their illness, which is called benefit finding/posttraumatic growth. These benefits are increased personal strength, improved personal relationships, greater appreciation of life, re-examining life priorities and a change towards healthier lifestyles. Benefit finding and adjustment is viewed by some as ‘positive outcome in itself’, but others view it as a ‘form of self-delusion, signalling denial or a distortion of reality’. Taylor’s model is a positive model and it is very dynamic. It is about restoring self-esteem and the focus is on acceptance and perceptions of control.

What leads to better adjustment to chronic diseases?

There are two ways to deal with chronic diseases. Denial and non-expression can be a useful initial coping strategy, but in the long-term it will be maladaptive. Unresolved and inhibited emotion may lead to rumination and worry, raised levels of (physiological) stress, delayed symptom recognition and help-seeking behaviour and anxiety and depression. Acknowledgement and expression may lead to better and faster processing of emotions, it may aid insight and self-reflection, it may ease processes of habituation, it may decrease emotional distress and it may improve closeness to others. But, it depends on the cultural context and on the stage of the illness.

What is the impact on informal caregivers?

Informal caregivers are caregivers who are not financially compensated for their services. They are usually relatives or friends who provide assistance to the patient, by helping him/hear dealing with daily activities, like getting dressed and cooking. In the U.S. there 65.7 million informal caregivers, which is about 29% of the adult population. 66% of those are female.

Meta-analyses have compared caregivers to non-caregivers and results show negative effects of caregivers on outcomes. These negative effects are depression, perceived stress, well-being and self-efficacy, more stress-hormones and less immunity and worse subjective objective global health.

Potential causes of caregiver’s distress can be emotional and physical demands of (long-term) caring, financial drain, inability to recharge the ‘personal battery’ and feelings of anger, guilt and grief which may lead to emotional problems.