Illness Perceptions and Diabetes

Question 1

Illness Cognitions

Making Sense of Health and Illness

Answer 1

What does it mean to be Healthy?

WHO (1947) defined good health as ‘a state of complete physical, mental and social wellbeing’. this definition presents a broad multidimensional view of health that departs from the traditional medical emphasis on physical health only.
Blaxter (1990) asked participants to describe a healthy person and consider ‘what makes you call them healthy’ and ‘what is it like when you are healthy?’. a qualitative analysis was then carried out on a sub-sample of these individuals. for some, health simply meant not being ill. However, many see health in terms of a reserve, a health life filled with health behaviours, physical fitness, having energy and vitality, social relationships with others, being able to function effectively and an expression of psychosocial wellbeing.
the issue of ‘what is health?’ has also been explored from a psychological perspective with a particular focus on health and illness cognitions. for example, Lau (1995) found that when young healthy adults were asked to describe what health meant to them, their beliefs about health could be understood within the following dimensions;
- physiological, i.e. good condition, have energy
- psychological, i.e. happy, energetic, feel good
- behavioural, i.e. eat and sleep properly
- future consequences, i.e. live longer
- the absence of illness, i.e. not sick, no disease/symptoms
Lau argued most people show a positive definition of health (and not just the absence of illness), which also includes more than just physical and psychological factors. elderly people, chronic illness sufferers and children also conceptualise health as being multidimensional. therefore there is an overlap between professional (WHO) and lay views of health (i.e. a multidimensional approach perspective involving physical and psychological factors).

What Does it Mean to be Ill?

Lau (1995) also asked his participants ‘what does it mean to be sick?’. their answers indicated the dimensions they use to conceptualise illness:
- not feeling normal
- specific symptoms
- specific illnesses
- consequence of illness
- timeline, i.e. how long the symptoms last.
- the absence of health, i.e. not being healthy
these dimensions have been described within the context of illness cognitions (also called illness beliefs/representiations).

Models of Illness:
Acute illness - rapid onset, short duration (can be cured), no long term consequences (e.g. common cold, STIs, constipation….)
Chronic illness - long duration (not cured but managed), may get worse over time (e.g. multiple sclerosis, HIV, diabetes, arthritis….); Also known as ‘Long-term conditions’.
Cyclical - comes and goes (e.g. migraines)

We like to categorise our illness to help understand it better and to cope appropriately. Helps us plan and know what to expect.

Question 2

Illness Cognitions

What are Illness Cognitions?

Answer 2

Leventhal and his colleagues (Leventhal et al. 1980, 2007a, 2007b) identified 5 cognitive dimensions of a patients own implicit common sense beliefs about their illness;

1) identity - refers to the label given to the illness and th esymptoms experienced
2) the perceived cause of the illness - biological or psychosocial. in addition, patients may hold representations of illness that reflect a variety of different causal models (e.g. ‘my cold was caused by a virus’)
3) timeline - refers to how long the symptoms last, whether it is acute (short term) or chronic (long term)
4) consequences - refers to the patients perceptions of the possible side effects of the illness on their life (physical, emotional, or a combination of factors)
5) durability and controllability - patients also represent illnesses in terms of whether they believe that the illness can be treated and cured and the extent to which the outcome of their illness is controllable either by themselves or by powerful others.
Some of these dimensions are similar to those described by attribution theory in chapter 2.
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Evidence for the Dimensions of Illness Cognitions

the extent to which beliefs about illness are constructed by these dimensions has been studied using two both qualitative and quantitative methodologies.

qualitative research:
Leventhal and his colleagues carried out interviews with individuals who were chronically ill, had been recently diagnosed as having cancer, and with healthy adults. the resulting descriptions of illness suggest underlying beliefs that are made up of the aforementioned dimensions. Leventhal argued that interviews are the best way to access illness cognitions as this methodology avoids the possibility of priming subjects. However, interviews encourage subjects to express their own beliefs, not those expected by the interviewer.

quantitative research:
other studies have used more artificial and controlled methodologies, and these too have provided support for the dimensions of illness cognitions. Lau et al. (1989) used a card sorting technique to evaluate how subjects conceptualised illness. they had to sort 65 statements into piles that ‘made sense to them’. these statements had been made previously in response to descriptions of ‘your most recent illness’. they reported that the subjects’ piles of categories reflected the dimensions of identity, consequences, timeline, cause and cure/control. a series of experimental studies by Bishop and his colleagues also provided support for these dimensions. there is also evidence for a similar structure of illness representations in other cultures.
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Measuring Illness Cognitions

Who do we Access Beliefs?

Leventhal and his colleagues originally used qualitative methods to assess peoples illness cognitions. since this time other forms of measurement have been used. these will be described in terms of questionnaires that have been developed and methodological issues surrounding measurement.

the use of questionnaires (quantitative):
it has been argued that interviews are a preferred method to access illness cognitions, but they are time consuming and can only involve a limited amount of subjects. New Zealand and the UK developed the Illness Perception Questionnaire (IPQ) with Weinmann et al. (1996) which asks subjects to rate a series of statements about their illness which reflect the dimensions of identity, consequences, timeline, cause, and cure/control. this questionnaire examines beliefs about illnesses and has been translated into different languages.
A revised version of the IPQ (the IPQR; Moss-Morris et al. 2002) has better psychometric properties and includes 3 additional subscales; cyclical timeline perceptions, illness coherence and emotional representations. had 38 items looking at illness representations (14 items on perceived symptoms and 18 on assessing causes) and added a 6th dimension, illness coherence. the B-IPQ (Broadbent et al. 2006) was also developed which uses 9 single items looking at illness perceptions and asked to list causes of illness. it is useful when participants don’t have much time or when they are completing a large battery of different measures. Broadbent et al. (2015) concluded from a systematic review and meta-analysis of 188 papers using B-IPQ that the scale has good concurrent and predictive validity and that the subscales were predictive of a wide range of health outcomes.

measuring treatment beliefs:
people also have beliefs about their treatment, whether it is medication, surgery or behaviour change. Horne (1997; Horne et al. 1999) developed a Beliefs about Medicine Questionnaire (BMQ) which conceptualised such beliefs along 4 dimensions; specific necessity, specific concerns, general overuse and general harm. research also shows that although individuals may report a consistent pattern of beliefs, this pattern varies according to cultural background (Horne et al. 2004).

measurement issues:
beliefs about illness can be assessed using a range of measures. French et al. (2002a) compared the impact of eliciting beliefs using either questionnaire or a vignette. the results showed that the two different methods resulted in different beliefs about the causes of heart attack and different importance placed upon the causes. in addition to this, the IPQ measures have been criticized for having ambiguous subscales, for being too general and not specific to the beliefs of each individual, and for not being sufficiently relevant for the characteristics of each individual condition. as well as this improvements are need for the idea of cure/control, is it one or two variables?

Qualitative research,
ask people about their experiences and beliefs

Overall individuals may show consistent beliefs about illness that can be used to make sense of their illness and help their understanding of any developing symptoms. these illness cognitions have been incorporated into a model of illness behaviour to examine the relationship between an individuals cognitive representation of their illness and their subsequent coping behaviour. this model is known as the ‘self-regulatory model of illness behaviour’.

Question 3

Illness Cognitions

The Self-Regulatory Model (SRM)
developed by Harold Leventhal

Answer 3

Also known as the Common sense model (CSM) or the Illness Representations Model. The model suggests that individuals construct ‘representations’ or perceptions of the health threat or illness based on their own ‘common sense beliefs’.

Leventhal’s model is based on approaches to problem solving and suggests that illness/symptoms are dealt with by individuals in the same way as other problems or a change in the status quo, the individual will be motivated to solve the problem and reestablish their state of normality. three stages have been applied to health using the SRM and are described briefly below;

Stage 1 - Interpretation:
an individual may be confronted with the problem of a potential illness through two channels, symptom perception (‘i have a pain in my chest’) or social messages (‘the doctor has diagnosed this pain as angina). once the individual has received information about the possibility of illness through these channels, according to theories of problem solving, the individual is then motivated to return to a state of ‘problem-free’ normality. this involves assigning meaning to the problem.
According to Leventhal, the problem can be given a meaning by accessing the individuals illness cognitions. therefore the symptoms and social messages will contribute towards the development of illness cognitions, which will be constructed according to the following dimensions; identity, cause, consequences, timeline, cure/control. These cognitive representations of the ‘problem’ will give the problem meaning and will enable the individual to develop and consider suitable coping strategies.
Another consequence of identifying the problem of illness, aside from cognitive representation, will also result in changes in emotional state. for example, perceiving a symptom of pain and receiving the social message that this pain may be related to coronary heart disease may result in anxiety. therefore, any coping strategies have to relate to both the illness cognitions and the emotional state of the individual.

Representation of health threat for individual:

• identity - label attributed to the threat/illness and symptoms associated with it
• cause - factors surrounding the cause and development of the illness (e.g. stress, exposure to cold, health behaviour)
• consequences - imagined and real effects of the illness (death, loss of work time, change to appearance)
• time line - expected duration and course of illness including time for development of disease and recovery
• cure/control - how the illness can be prevented, cured or symptoms controlled

Emotional Response to health threat for individual:

• Fear
• anxiety
• depression

Both Representation and Emotional Response impacts the coping and appraisal stage.

Stage 2 - Coping:
the next stage in the SRM is the development and identification of suitable coping strategies. coping can take many forms, however, two broad categories of coping have been defined that incorporate the multitude of other coping strategies; approach coping (adaptive, proactive, problem focused) and avoidance coping (maladaptive, avoid stressors and negative emotions). when faced with the problem of illness, the individual will therefore develop coping strategies in an attempt to return to a state of health normality.

Stage 3 - Appraisal:
this involves individuals evaluating the effectiveness of the coping strategy and determining whether to continue with this strategy or whether to opt for an alternative one.

Why is the Model called Self-Regulatory:
this process is regarded as self-regulatory because the 3 components of the model (interpretation, coping, appraisal) interrelate in order to maintain the status quo (i.e. they regulate the self). therefore, if the individuals normal state (health) is disrupted (by illness), the model proposes that the individual is motivated to return the balance back to normality. this self-regulation involves the 3 processes interelatting in an ongoing and dynamic fashion. therefore, interactions occur between the different stages. for example,
- symptoms perception may result in an emotional shift, which may exacerbate the perception of symptoms
- if the individual opts to use denial as their coping strategy, this may result in a reduction in symptom perception, a decrease in any negative emotions and a shift in their illness cognition.
- a positive appraisal of the effectiveness of the coping strategy may itself be a coping strategy

Problems with Assessment:

• if the different components of the SRM interact, should they be measured separately?
• if the different components of the SRM interact, can individual components be used to predict outcome or should the individual components be seen as co-occurring?

Question 4

Illness Cognitions

Stage 1: Interpretation

Answer 4

SYMPTOM PERCEPTION
it is often assumed that we experience symptoms in response to some underlying physical problem. research exploring symptom perception indicates that this simple stimulus-response model of symptoms ignores the wealth of psychological factors that can make symptoms either better or worse. research has addressed individual difference in symptom perception and the role of mood, cognition and the social context.

Individual Differences in Symptom Perception:
symptom perception is not straightforward and research indicates much variability between people in terms of an internal/external focus, demographics and attachment styles.

Internal/External Focus:
Pennebaker (1983) argues that some individuals may sometimes be internally focused and sensitive to symptoms, others may be more externally focused and less sensitive to any internal changes. However, the difference is not always consistent with differences in how accurate people are detecting their symptoms. Pennebaker reported that internally focused individuals tend to overestimate changes in their heart rate compared to externally focused individuals.
In contrast, Kohlmann et al. (2001) found a negative correlation; those who stated they were aware of their heart underestimated their heart rate. internally focused individuals has been related to a perception of slower recovery from illness (Miller et al. 1987) and to more health-protective behaviour (Kohlmann et al. 2001). being internally focused may result in a different perception of symptom change, not a more accurate one.

Demographics:
In a study, parents and adolescents completed measures of their somatic symptoms 6 times a day for 7 consecutive days. the results showed that symptoms were more likely to be reported in the mornings and evenings and less likely to be reported on weekend evenings. in addition, women reported more symptoms in the evening compared to their parents (Michel 2007). in a parallel study, variation in symptom reporting was found at the individuals level but not at the family level.(Michel, 2006).

Attachment Style:
this notion is derived from Bowlby’s (1973) early work on how children internalise their interactions with their primary caregiver to from the basis for their beliefs and expectations of present and future interpersonal interactions. Ainsworth et al. (1978) used this perspective to develop their 3-factor model of attachment behaviour and classified attachment as secure, anxious ambivelant, and avoidant. attachment style has been used to inform much recent research across all areas of pscyhology. within health psychology, research has identified a link between attachment style and symptom reporting and in general research indicates that those with secure attachments report fewer somatic symptoms. research has also explored factors that may mediate this relationship and indicates that higher levels of symptoms may only relate to a less secure attachment style in those with either negative effect, lower social support or higher levels of suppressed anger.

Mood Cognition and Social Context:
Skelton and Pennebaker (1982) suggested that symptom perception is also influenced by factors such as mood, cognitions and the social context. mood is apparent in pain perception with anxiety increasing. an individuals cognitive state is illustrated by the placebo effect with their expectations of recovery, resulting in reduced symptoms perception. cross cultural research consistently shows variation in the presentation of psychiatric symptoms such as anxiety, psychosis and depression.
Mechanic (1962) suggested that this phenomenon can be understood in terms of the following;
- mood - medical students become quite anxious due to the workload. this anxiety may heighten their awareness of any physiological changes, making them more internally focused.
- cognition - medical students are thinking about symptoms as part of their course, which may result in a focus on their own internal states
- social context - once one student starts to perceive symptoms, others may model themselves on this behaviour
symptom perception is not a simple process and influenced by numerous factors including mood, cognitions and social context which can make symptoms worse or better. they may also create symptoms in the first place.
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SOCIAL MESSAGES

(info can come from health professional/lay individuals)

such messages may or may not be a consequence of symptom perception. for example, a formal diagnosis may occur after symptoms have been perceived, when the individual has subsequently been motivated to go to the doctor and has been given a diagnosis.

However, screening and health checks may detect illnesses at an asymptomatic stage of development and therefore attendance for such a test may not have been motivated by symptom perception.
Before and after consulting with the health professional, people often access their social network, which has been called their ‘lay referral system’ by Freidson (1970). this involves seeking information and advice from multiple sources. people may or may not get social messages which will influence how they interpret the ‘problem’ of illness and whether they decide to seek help (behaviour).

Question 5

Illness Cognitions

Stage 2: Coping

Answer 5

COPING WITH THE CRISIS OF ILLNESS

What is Crisis Theory?

Crisis theory has been generally used to examine how people cope with major life crises and transitions and has traditionally provided a framework for understanding the impact of illness or injury. the theory was developed from work done on grief and mourning and a model of developmental crises at transition points in the life cycle. in general, crisis theory examines the impact of any form of disruption on an individuals established personal and social identity. it suggests that psychology systems are driven towards maintaining homeostasis and equilibrium in the same way as physical systems. within the framework any crisis is self-limiting as the individual will find a way of returning to a stable state; individuals are therefore regarded as self-regulators.

Physical Illness as a Crisis:
Moos and Schaefer (1984) argued that physical illness can be considered a crisis as it represents a turning point in an individuals life. they suggest that physical illness causes the following changes, which can be conceptualised as a crisis,
- changes in identity - such as from carer to patient
- changes in location - such as becoming hospitalised
- changes in role - such as independent to dependent
- changes in social support - isolation due to illness
- changes in the future - children, career or travel
- illness is often unpredicted - not considered possible coping strategies
- information about the illness is unclear - particularly in terms of causality and outcome
- a decision is needed quickly - e.g. should we operate? should we take medicine? should we take time off of work?
- ambiguous meaning - meaning of illness can often be ambiguous, e.g. is it serious? how long will it affect me?
- limited prior experience - most individuals are healthy most of the time. therefore illness is infrequent and may occur to individuals with limited prior experience. this lack of experience has implications for the development of coping strategies and efficacy based on other similar situations

The Coping Process
once confronted with the crisis of physical illness, Moos and Schaefer (1984) described 3 processes that constitute the coping process: 
1) cognitive appraisal 
2) adaptive tasks 
3) coping skills

Process 1 - Cognitive Appraisal
at the stage of disequilibrium triggered by the illness, an individual initially appraises the seriousness and significance of the illness. factors such as knowledge, previous experience and social support may influence this appraisal process. in addition, it is possible to integrate Leventhal’s illness cognitions at this stage in the coping process because such illness beliefs are related to how an illness will be appraised.

Process 2 - Adaptive Tasks
Following cognitive appraisal, Moos and Schaefer describe seven adaptive tasks that are used as part of the coping process. these can be divided into three illness-specific tasks and 4 general tasks (illustrated in Figure 8.1).

Process 3 - Coping Skills
following both appraisal and the use of adaptive tasks, Moos and Schaefer described a series of coping skills that are accessed to deal with the crisis of physical illness. these coping skills can be categorised into 3 forms; 1) appraisal-focused coping 2) problem-focused coping 3) emotion-focused coping
therefore, according to this theory of coping with the crisis of a physical illness, individuals appraise the illness and then use a variety of adaptive tasks and coping skills which in turn determine the outcome

Evidence for Coping with the Crisis of Illness

much research has used the notion of crisis theory and coping with the crisis of illness to explore, predict and change how people respond to illness. in particular, research has explored the relative impact of different types of coping on a range of psychological outcomes following illness. for example, research exploring coping with rheumatoid arthritis suggests that active and problem-solving coping are associated with better outcomes whereas passive avoidant coping is associated with poorer outcomes. for patients with chronic obstructive pulmonary disease (COPD), wishful thinking and emotion-focused coping were least effective. similarly, research exploring stress and psoriasis shows that avoidant coping is least useful. further, for women at risk of ovarian cancer, problem-focused coping predicted higher distress over time.

Implications for the Outcome of the Coping Process

ADJUSTMENT TO PHYSICAL ILLNESS AND THE THEORY OF COGNITIVE ADAPTATION

Taylor and colleagues examined ways in which individuals adjust to threatening situations in an alternative model of coping. through conducting interviews, they suggested that coping with threatening events consists of 3 processes:

1) a search for meaning
2) a search for mastery
3) a process of self-enhancement

Cognitive Adaptation Theory (CAT)
Adapted by Taylor et al. (1984)
A Search for Meaning:
- Causality - 'why did it happen?'
- Implications - 'what affect has it had?'
A Search for Mastery:
- Control - 'how can I prevent it from happening again?'
The Process of Self-Enhancement:
- Social Comparisons - 'I am lucky'
Illusions:
- 'I understand my illness'

Evidence for CAT:
has been used to explore, predict and change the ways in which people cope with illness. research indicates that forms of cognitive adjustment are linked to illness progression in people with HIV/AIDS, that cognitive adaptation influences how people manage cancer and that it reflects the ways in which women respond to having a termination. In 2013, Christianson et al. explored the role od sense making in adjustment in 80 late stage cancer patients and concluded that greater meaning predicted greater quality of life. Likewise, Czajkowska et al. (2013) used the cognitive adaptation index scale with 57 patients with non-melonoma skin cancer and reported that adaptation predicted 60% of the variance in patient distress.

Implications for the Outcome of the Coping Process:
according to this model of coping, the individual copes with illness by achieving cognitive adaptation. this involves searching for meaning, mastery and developing self-esteem. these beliefs may not be accurate but they are essential to maintaining illusions that promote adjustment to the illness. Therefore, in this perspective the desired outcome of the coping process is the development of illusions, not reality orientation.
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POST-TRAUMATIC GROWTH AND BENEFIT-FINDING

Most theories of coping emphasise a desire to re-establish equilibrium and a return to the status quo. effective coping is therefore seen as that which enables adjustment to the illness and a return to normality. some research, however, indicates that some people perceive benefits from being ill and see themselves as being better off because they have been ill

Evidence for Post-Traumatic Growth and Benefit-Finding:
the positive consequences of traumatic events have been explored in terms of the experiences of positive growth, the correlates of positive growth, the predictors of positive growth and the role of positive growth in predicting patient outcomes.

The Experience of Positive Growth:
Tedeschi and Calhoun carried out a synthesis of literature that concluded post traumatic growth was a more progressed form of positive adjustment than either just resilience or optimism and involved a process of transformation

The Correlates of Positive Growth:
some research indicates a strong overlap between post-traumatic growth (PTG) and other aspects of sense making and coping. Shand et al. (2015) found that PTG was associated with decreases in distress and depression and increases in social support, optimism, positive reappraisal, spirituality and religious coping. there has also been a link with PTG to illness cognitions; Lau et al. (2017) found illness cognitions relating to coherence, treatment control, personal control, and attribution to carelessness were positively associated with PTG whilst illness cognitions relating to timeline, consequence, identity, attribution to God’s punishment/will, and attribution to chance/luck were negatively associated with PTG.

Predicting Post-Traumatic Growth:
Research has also explored the role of different factors in predicting positive growth after trauma. For example, Tedeschi and Calhoun (2004) argued that the degree of post-traumatic growth relates to symptoms severity, time elapsed since the event, age, gender, social support and a clear cause to the event.

The Role of Post-Traumatic Growth and Health Outcomes:
other studies have explored the role of post-traumatic growth in predicting patient outcomes. For example, Milam (2006) concluded that post-traumatic growth following a diagnosis of HIV was protective against certain physical illness and Reed et al. (1994) reported how ‘realistic acceptanxce’ of their HIV diagnosis illustrated by statements such as ‘I tried to accept what has happened’ and ‘I prepare for the worst’ was related to a higher chance of death at follow-up.

Implications for the Outcome of the Coping Process:
Most models of coping emphasise a return to the status quo and the re-establishment of the equilibrium to back to where the individual was at the start of the process. in contrast, a post-traumatic growth or benefit-finding perspective illustrates how at times the individual ends up in a better place than they were before whatever traumatic event happened. The event, whether it be an illness, a life event such as a divorce or a serious accident is coped with in such a way that the individual is able to find the position in the event and incorporate these into a more fruitful future.

Conclusion:
coping research therefore explores the ways in which individuals manage and respond to any change in their lives. Health psychology draws upon coping with the crisis of illness and cognitive adaptation theories which emphasise how people are motivated to return to a state of normality. in contrast, research on post-traumatic growth and benefit-finding highlights how an illness may have positive consequences for the individual, and this is in line with recent developments within the positive psychology movement. this final approach is also similar to some work on sustained changes in behaviour following life events or ‘epiphanies’, which is described in chapter 7.

Question 6

Illness Cognitions

Predicting and Changing Health Outcomes

Answer 6

The Self-Regulatory model describes a transition from interpretation, through illness cognitions, emotional response and coping to appraisal. early research used the model to ask the question, ‘How do illness cognitions relate to coping?’ More recent research, however, has explored the impact of illness cognitions on psychological and physical health outcomes with a focus on adherence to treatment and recovery from illnesses and recovery from illnesses including stroke, rheumatoid arthritis and myocardial infarction (MI-heart attack).

HOW DO ILLNESS COGNITIONS RELATE TO COPING?
Much correlational research has explored the links between the different components of the SRM with a focus on the associations between illness cognitions and coping across a number of different health problems. For example, Kemp et al. (1999) reported a link between perception of control over illness and problem-focused coping patients with neuroepilepsy and Lawson et al. (2007) concluded that most positive personal models (i.e. greater control, shorter timeline, physical activity) were associated with more effective coping strategies in people with type 1 diabetes.

Searle et al. (2007) also stated research should address coping behaviours in terms of what people actually do (e.g. taking medication, diet, physical activity). they explored associations between illness cognitions, coping cognitions and coping behaviours in patients with type 2 diabetes. the results showed that illness cognitions predicted both aspects of coping, as well as a direct link between illness cognitions and coping behaviours which was not medicated through coping cognitions. They argue that if we want to change peoples behaviour (i.e. taking medication, diet, physical activity), it might be better to try and change their illness cognitions rather than their coping cognitions.

PREDICTING ADHERENCE TO TREATMENT
Leventhal et al. (1980, 1997) has shown that beliefs about illness in terms of dimensions relates to coping and whether or not a person takes their medication and/or adheres to suggested treatments. some research has shown that symptom perception is directly linked to adherence to medication. for example, Halm et al. (2006) results showed that hospitalised asthma patients who held the ‘acute asthma belief’ were also less likely to take their medication.
some research has also included a role for treatment beliefs. for example, Horne and Weinmann (2002) results showed that non-adherers to treatment in asthma patients reported more doubts about the necessity of their medication, greater concerns about the consequences of the medication and more negative beliefs about the consequences of their illness.

PREDICTING ILLNESS OUTCOMES
research has also used the SRM to understand and predict illness outcomes for a range of conditions including rheumatoid arthritis, diabetes, chronic fatigue syndrome, and renal disease. in 2015, Dempster et al. conducted a meta-analysis of illness cognitions and physical health conditions and found that across a range of illnesses, beliefs about the consequences of illness and emotional representations were consistently most associated with outcomes such as depression, anxiety and quality of life. research has particularly explored the role of illness cognitions in predicting recovery from stroke and myocardial infarction (MI), which will now be described. (look at page 208 to see the effects from the recovery from stroke and from MI)

THE CENTRAL ROLE OF COHERENCE
central to much research on illness beliefs and their relationship to outcome is the importance of a coherent model whereby beliefs about causes of the illness are consistent with beliefs about treatment (Leventhal et al. 1997). Leventhal and colleagues describe this association between causes and solutions in terms of the ‘if…then rules’. for example, if i believe that breathlessness is caused by smoking, then i am more likely to decide to stop smoking. in contrast, an obese person who believes that their weight is caused by hormones rather than their diet is unlikely to eat less when advised to do so. most research addressing the issue of coherence has focused on cross-sectional associations between the different sets of beliefs.

INTERVENTIONS TO CHANGE ILLNESS COGNITIONS
research shows that people make sense of their illness and form cognitions which relate to their health outcomes. in line with this, interventions have been developed in an attempt to change illness cognitions and improve subsequent outcomes. some interventions have used face-to-face consultations with a psychologist, while others, in line with the saying ‘a picture paints a thousand words’, have used visual information.
- face to face consultations
- imagery-based interventions

Test messages and Asthma:
•RCT to assess the impact of a text message programme targeted at changing patients’ illness (and medication) beliefs on adherence in young adult asthma patients (n = 216).
•The texts sent were based on the participant’s baseline scores on the BIPQ
•Example texts:
“Take your preventer every day and control your asthma before it controls you”
“Your asthma symptoms may come and go but your asthma is always there”

Results:
•At follow up, intervention group had increased their belief in the long-term nature of their condition and in how much control they had over the condition.
•Adherence to asthma treatment/medication was improved relative to the control group.

Lower Back Pain and Cognitive Treatment

• Waiting list Group (n = 54) vs ‘Cognitive treatment of Illness perceptions’ Group (n = 104)
• CTIL group received 10-14 x 1-hour weekly treatment sessions.
• Baseline vs follow-up (18 weeks); IPQ-R
• Primary outcome: patient-relevant physical activities

Results:
•Intervention group had sig. better patient-relevant physical activities; group effect
•Significant differences were found: timeline, consequences, personal control, and coherence
•These changes were related to changes in patient-relevant activities and explained 14.4% of the variance.

FOCUSING ON EMOTIONS

•Support a move to more emotion regulation focused interventions
•Examples include a self-regulation writing technique, anxiety modulation techniques such as meditation, guided discussion on emotional response to cancer diagnosis, disclosure writing exercises etc.
•Cognitive interventions may not always work as they serve to redirect attention away from the emotions
Cameron, & Jago (2008)

Question 7

Illness Cognitions

Thinking Critically about Illness Cognitions

Answer 7

• the mere measurement effect
  research often explores how people feel about their symptoms or illness by using existing questionnaires. it is possible that such measures change beliefs rather than simply access them.
• discrete constructs
  models of illness behaviour describe how the different constructs relate to each other. it is not always clear, however, whether these two constructs are really discrete.
• the timing of measures
  many of the constructs measured as part of research on illness behaviour are then used to predict health outcomes such as illness beliefs and coping. it is not clear how stable these constructs are and whether they should be considered states or traits. as a self-regulatory model, the changing nature of these constructs is central. however, it presents a real methodological problem in terms of when to measure what and whether variables are causes or consequences of each other.

Question 8

What is diabetes?

Answer 8

• Diabetes is a long-term health condition where blood sugar levels (blood glucose) are chronically too high
• This occurs when the pancreas can’t make enough insulin, or when the body can’t make good use of the insulin it does make
• Insulin is a hormone that acts like a key to help glucose pass from our blood into our cells to be used for energy

Involves:
1) Carbohydrates in food broken down into glucose
2) Glucose released into blood
3) Pancreas releases insulin
4) Insulin (a hormone) helps glucose into cells
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Types of diabetes:

Type 1
•Autoimmune disorder (immune system destroys cells that produce insulin)
•Most often diagnosed in children and adolescents
•Requires daily insulin injections
Type 2
•Linked to genetics and age, but also behaviours (e.g. diet, exercise)
•Not producing enough insulin (pancreatic cell fatigue), or cells not responding to insulin (misshapen ‘locks’)

Prevalence of diabetes in the UK?

3.9 million people diagnosed with diabetes in the UK
- 90% Type 2
- 28% Type 1
- 12% other types
Almost one million people undiagnosed with type 2 = 4.8 million
Expected to rise to 5.3 million by 2025
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What are the symptoms of diabetes?

main symptoms

• urinate a lot more often
• dehydrated
• lethargic
• unexpected weight loss
• infections like thrush
• blurred vision

complications of diabetes as a result of a condition not well managed or treated, being ill or not being on the right dose of medication:

Acute complications
•Hypoglycaemia - low blood glucose (not enough insulin intake)
•Hyperglycaemia - high blood glucose (too much insulin intake)
•Life-threatening emergencies due to very high blood sugar

Long-term complications (can build up overtime)
•Heart disease and stroke
•Eye problems (retinopathy)
•Foot problems (amputation risk)
•Kidney problems (nephropathy)
•Nerve damage (neuropathy)
•Gum disease
•Some cancers
•Sexual problems

can explain it by:
Chronically high blood glucose -> damaged blood vessels -> damaged nerves
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Risk factors for developing type 2 diabetes

•Age
•Gender
•Ethnicity
•Family history (parent, sibling, child)
•Overweight and obesity (especially around the middle)
•High blood pressure
•History of gestational diabetes
•Physical inactivity
•Also smoking, alcohol, sleep disturbance, medications, other conditions…
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Risk factors for developing type 2 diabetes (2)
•Age
•Gender
•Ethnicity
•Family history (parent, sibling, child)
•Overweight and obesity (especially around the middle)
•High blood pressure
•History of gestational diabetes
•Physical inactivity
•Also smoking, alcohol, sleep disturbance, medications, other conditions…

Which of these are modifiable (i.e. can be changed)?
Overweight and obesity
high blood pressure
physical inactivity
smoking
alcohol
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How can we treat type 2 diabetes?

Diet and physical activity
•Smaller portions and lower GI, not overwhelming insulin production
•Exercise lowers blood glucose (BG) & helps glucose enter cells without insulin
•Weight loss reduces other risk factors and makes it easier to lower BG

Tablets and medication (e.g. metformin)
•Reduce amount of glucose released into the blood, help insulin work better, stimulate the pancreas to produce more insulin, slow down absorption of starchy foods in the intestines, protect cells in the pancreas to work longer

What about prevention?

Prediabetes (non-diabetic hyperglycemia)
•Blood glucose higher than the normal range, but not high enough to be diagnosed with type 2 diabetes
•At high risk of developing type 2 diabetes

Usually no symptoms, so important to know the risk factors
Around 12.3 million people at risk of type 2 diabetes in the UK
3 out of 5 cases of Type 2 diabetes are preventable

Question 9

Diabetes impacting mental health, relationships and cognitive functioning

Answer 9

Diabetes and Depression:

People with depression are more likely to develop type 2 diabetes
People with type 2 diabetes are more likely to develop depression
(reciprocal relationship)

Knol et al. (2006) meta-analysis: Depressed adults have a 37% increased risk of developing type 2 diabetes

Nouwen et al. (2010) meta-analysis: Compared with non-diabetic controls, people with type 2 diabetes have a 24% increased risk of developing depression

Diabetes and depression – possible explanations
•Shared genetic and environmental factors?

Increased risk of diabetes
•Biochemical changes due to mental health conditions (e.g. elevated cortisol)
•Medications for mental health conditions
•Symptoms of mental health conditions (e.g. lethargy, lack of motivation) → leads to poorer self-care, less physical activity, reduced medication adherence

Increased risk of depression for people with diabetes
•Neuropathy, blocked blood vessels in the brain, altered cerebral metabolism
•Overwhelming and exhausting nature of managing diabetes
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Diabetes and other mental health conditions (linked)
•People with bipolar disorder and schizophrenia are at higher risk of developing type 2 diabetes than the general population
•Generalized anxiety disorder and eating disorders are more prevalent in people with diabetes compared to the general population
Canadian Diabetes Association Clinical Practice Guidelines Expert Committee, 2013
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Diabetes and other psychosocial outcomes

Nicolucci et al. (2013), DAWN2 study
Survey of 8596 adults with diabetes (T1 & T2) across 17 countries
•44.6% reported diabetes-related distress
•12.2% reported poor quality of life
•20.5% reported negative impact of diabetes on relationships with friends/family
•46.2% reported negative impact on emotional wellbeing
•38.9% reported diabetes treatment interfered with ability to live a normal life
•27.7% reported a positive impact of diabetes on at least one aspect of their life
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Impact on relationships and family members (Stuckey et al., 2016)
- worries of hypoglycaemia
- Emotional strain
———————————————————————————Diabetes and disruption to cognitive function

Jacobson et al. (2007), Type 1 diabetes (n=1144)
- Higher glycated haemoglobin associated with moderate declines in motor speed (P=0.001) and psychomotor efficiency (P<0.001)

Sadanand et al. (2016), Type 2, meta-analysis
- Decrements in episodic memory (d = -0.51), logical memory (d = -0.24), phonemic fluency (d = -0.35), cognitive flexibility (d = 0.52), speed of processing (d = -0.22). No difference in verbal short-term memory and working memory

Mansur et al. (2018), Type 2, meta-analysis
- Higher HbA1c significantly associated with deficits in processing speed (R2 values 0.41 to 0.73, P < .01) and working memory/executive function (R2 = 0.62, P < .001).
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Summary

• People with depression and some other mental health conditions are at higher risk of developing type 2 diabetes
• People with diabetes are at higher risk of developing depression and are more likely to experience other MH conditions such as anxiety and eating disorders
• Diabetes can lead to cognitive dysfunction and negative psychosocial outcomes including distress, reduced emotional wellbeing, and strained family relationships
• Consequently, it is extremely important to try and prevent type 2 diabetes and improve self-management to reduce negative outcomes
  → requires behaviour change

Question 10

Diabetes behaviour change approaches

Answer 10

Diabetes self-management behaviours:

Checking blood glucose levels (e.g. finger-prick)
Calculating insulin dose
Injecting insulin
Healthy diet (e.g. balance of carbs, proteins, fats)
Calculating carbohydrates
Physical activity
Adhering to medications
Regular eye checks and foot checks
Attendance at doctor and nurse appointments
→ A complicated condition to manage!
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Diabetes prevention behaviours
- Healthy diet (e.g. balance of carbs, proteins, fats)
- Physical activity

Using psychological theory to understand diabetes behaviours:
Leventhal’s SRM can be used which involves a person having a stimulus, like perceiving a new symptom or having a message about a new health threat which leads to an emotional response (fear, anxiety, depressive symptoms). it also leads to a cognitive response (identity, cause, consequences, timeline, cure/control).
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Can the Self-Regulation Model explain diabetes behaviours?

McSharry et al. (2011)
Meta-analysis examining relationship between illness perceptions and HbA1c level in adults with diabetes

Higher HbA1c (poor glycaemic control):
Identity (r+ = 0.14), Consequences (r+ = 0.14), Timeline Cyclical (r+ = 0.26) Concern (r+ = 0.21), Emotional Representations (r+ = 0.18)  - leads to poor glycaemic control

Lower HbA1c (better glycaemic control):
Personal Control (r+ = – 0.12) - related to better glyaemic control
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Can the Self-Regulation Model explain diabetes behaviours?

Bean, Cundy & Petrie (2007) New Zealand:
Pacific Islanders and South Asians had shorter timeline perceptions than Europeans
Pacific Islanders had higher consequences, identity and emotional representations scores
Results - Illness perceptions were associated with metabolic control (e.g. identity, consequences, control) as well as self-efficacy, emotional representations and beliefs about treatment – some ethnicity
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Can the Self-Regulation Model explain diabetes behaviours?

Mann et al. (2009) Study of predictors of adherence to medication in people with type 2 diabetes in New York, including illness and treatment beliefs
Brief illness perception questionnaire (Broadbent et al., 2006)
Beliefs about Medicines questionnaire (Horne and Weinman, 1999)

Predictors of poor medication adherence:
•Belief they have diabetes only when their sugar is high (OR = 7.4;2–27.2)
•Lack of self-confidence in controlling diabetes (OR = 2.8;1.1–7.1)
•Belief no need to take medicine when glucose is normal (OR = 3.5;0.9–13.7)
•Worry about side-effects of diabetes medicines (OR = 3.3;1.3–8.7)
•Feeling medicines are hard to take (OR = 14.0;4.4–44.6)
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Interventions to change diabetes behaviours:

Cradock et al. (2017) Investigating which BCTs in diet and physical activity interventions are most effective in changing HbA1c and body weight
Four of 46 BCTs identified were associated with >0.3 % reduction in HbA1c:
•instruction on how to perform the behaviour
•behavioural practice/rehearsal
•demonstration of the behaviour
•action planning
Also: supervised physical activity, group sessions, contact with exercise physiologist and dietitian, and interventions of greater frequency and intensity
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Interventions to change prediabetes behaviours:

Greaves et al (2011) Systematic review of reviews

• Interventions resulted in weight loss and increased physical activity
• Intervention effectiveness was increased by the BCT engaging social support (causal analysis)
• ## Also association with higher intervention contact frequency and using “self-regulatory” behaviour change techniques (e.g. goal-setting, self-monitoring).Interventions to change diabetes behaviours: Real-world examples

DESMOND: Diabetes Education and Self Management for Ongoing and Newly Diagnosed
•Theory-based national group education programme for people with T2D
•Delivered in community settings over 6 hours
•Based on Leventhal’s self-regulation theory, dual process theory, social learning theory and aims to embed patient empowerment
•Focus on food choices, physical activity, and cardiovascular risk factors
•Participants asked to choose a specific, achievable goal of behaviour change