This is the Chapter 14 of the book Introduction to Health Psychology (Val Morrison_ Paul Bennett) 4th Edition. Which is content for the exam of the component Health Psychology of Module 5 (Health Psychology & Applied Technology) of the University of Twente, in the Netherlands.

Ch.14: impact/outcome illness, patient perspective

Impact of illness:

• Generic model of emotional and coping responses from the onset of symptoms
  • Uncertainty: tries to understand the meaning and severity of the first symptoms
  • Disruption: when it becomes evident have significant illness --> crisis characterised by intense stress and a high level of dependence on health professionals and/or other people who are emotionally close to them
  • Striving for recovery: attempting to gain some form of control over their illness by means of active coping.
  • Restoration of well-being: motional equilibrium based on an acceptance of the illness and its consequences
• Stages of response to a cancer (Holland and Gooen-Piels, 2000):
  
  • Initial feelings of disbelief
  • Dysphoria: individuals gradually come to terms with the reality of their diagnosis -->  significant distress and related symptoms

Physical outcomes:

• Carry significant societal costs --> ability/disability, quality life, extent person is able to function independently,…

Fatigue:

• Prevalence --> pervasive in many chronic conditions/common in neurological conditions
• Fatigue Assessment Scale (Michielsen et al. 2003): assessed by evaluating performance such as the speed and strength of physical movement (motor function), or derived from indices of sleep amount and quality, but is also often recorded through subjective reports
• negative emotional correlates of fatigue increase the detrimental impact of illness on a person’s life --> relationship likely to be bidirectional

Negative emotions:

• Depression and anxiety:
  • Prevalence:
    • 1/3 or more of heart disease and heart attack patients, experience both.
    • stroke patients, the significant levels of emotional distress + psychosocial factors --> predicting long-term emotional outcome
  • Self-management (storylines) --> illness, can take on a life of their own, above and beyond symptom management
    
    • ‘becoming sick’ --> ‘rebuilding a spoiled identity’ --> ‘living a disciplined and balanced life’--> ‘mobilizing a care network’ --> ‘navigating and negotiating in the health care system’
  • HIV infection: illness with high degree of stigma --> higher levels of reported distress.
    
    • Punishment beliefs: infection is considered to be a ‘punishment’ for ‘inappropriate’ behaviour.
• Loss of self: chronic illness bring about “loss of self” to the illness into their self-concept

Responses to treatment:

• Distress --> individuals may weigh up:
  • unwanted effects of treatment against the benefits of symptom reduction and survival gains
  • patient perceptions and expectancies of the treatment, as well as the perceived severity of symptoms
• Entering large institutions such as hospitals --> depersonalisation and loss of control
• Pre-surgical anxiety: high and has been shown to influence post-surgical outcomes such as wound healing

End treatment:

• Emotional ambivalence: one hand, the treatment and any side effects have stopped, other hand, sense of vulnerability and of being abandoned
  • When no longer need to focus their attention on medical treatment, room is left for a psychological struggle to begin
• Staged reactive process to dying  (Kubler-Ross, 1969):
  
  • initial shock and numbness
  • followed by a stage of denial and feelings of isolation
    
    • angry, blame others or even attempt to ‘bargain’ for goals they wish to meet before dying
  • final stage as one of acceptance, not always reached

Effect negative emotions to illness:

• Depressed people -->  less likely to engage in illness self-management (anxiety similar effect), may also extend to risk-taking
• How a person experiences, processes and copes with their emotions can impact on their adjustment
  
  • Maladaptive: avoidance and repression of one’s emotions
  • Adaptive: acknowledgement and expression of how one feels

Positive response to illness:

Positive dispositional characteristics and positive appraisals can influence illness outcomes either directly or indirectly

• Positive appraisals: optimistic outlook
  • mastery beliefs was associated with less severe pain and reduced fatigue among cancer patients
• Positive emotions:
  
  • Promotion of psychological resilience and more effective problem solving
  • Dispelling of negative emotions
  • Triggering of an upward spiral of positive feelings

Finding benefit and post-traumatic growth:

• Post-traumatic growth: experience positive psychological change as a result of a struggle with stressful life circumstance(s)
  • Domains of post-traumatic growth:
    • Enhanced personal relationships
    • Greater appreciation for life
    • Increased personal strength
    • Greater spirituality
    • Valued change in life priorities and goals
• Benefit finding: fits within larger framework of post-traumatic growth --> considered as a potential predictor of outcomes
  
  • Realism important, otherwise benefit-finding may have reflected early unrealistic hope which, when unmatched by outcomes, became a cause of distress
  • Good relationships may contribute to creation and maintenance of positive emotions
• Other factors influence the experience of benefits:
  
  • self-efficacy (a personal resource)
  • social resources (amount of social support received
  • Optimism
  • Searching for meaning: sense of purpose in new situation is a form of cognitive restructuring that may help a person deal with or adapt to the challenge of illness

Coping with illness:

• Crisis theory: illness as a ‘crisis’, changes in identity (sick person), location (hospital), role (from independent to dependent) and changes to aspects of social support (social isolation). Cope out of a motivation to restore equilibrium and normality in their lives.
  • Illness does not trigger unique coping strategies --> processes that resulted from the crisis of illness:
    • Cognitive appraisal: appraises the implications of the illness for their lives
    • Adaptive tasks: required to perform illness-specific tasks and general tasks
    • Coping skills: coping strategies defined as either appraisal-focused (denial, positive reappraisal), problem-focused (information/support seeking) and emotional focused (mood regulation)

Denial or avoidance:

• Conscious or unconscious denial --> adaptive in the short term as it enables the individual to minimise any threat and cope with the distress felt --> longer term, however, tend to interfere with active coping efforts

Problem-focused and acceptance coping:

Situations are generally dynamic and multidimensional, and therefore responses also need to be dynamic and multidimensional

• Acceptance coping: lower levels of distress
• Problem-focused coping: high levels of positive mood
• Amotion-focused coping: low mood

Religious coping and spirituality:

• Religious beliefs associated with higher perceived challenge appraisals, greater optimism, hope, meaning-making and better emotional and physical adjustment in older adults’ response to general stress
  • Belief in ‘punishing’ God was associated with poorer mental health than beliefs in a ‘supportive’ God
• Spirituality: contrasted with religion in that it tends to be more personal and individualistic rather than institutional or collectivist; more emotion-focused than problem-focused; directed inwards more than outwards; more concerned with self-actualisation than sacrificial demands or duties, and more anti-authoritarian than religion

Illness acceptance:

‘Recognizing the need to adapt to chronic illness while perceiving the ability to tolerate the unpredictable, uncontrollable nature of the disease and handle its adverse consequences’

• Acceptance of illness or condition more challenging when high degree of visibility --> reactions of others to one’s appearance --> negative consequences for self-confidence self-esteem, social interaction and emotional well-being

Illness and Quality of life:

• Quality of life (QoL): individual’s evaluation of their overall life experience at given time
• ‘Health-related QoL’ (HRQoL): life experience and how it is affected by symptoms, disease, accidents or treatments, and also by health policy.
  
  • Levels of mental, physical, role (e.g. work, parent, carer) and social functioning.
  • Level of satisfaction with treatment, outcome and health status and with future prospects
• World Health Organization Quality of Life (WHOQOL): person’s perceptions of their position in life in relation to cultural context and the value systems in relation to own goals, standards and expectations
  
  • (WHOQOL-100): different facets of QoL grouped into one of six domains

1. Physical health (energy/fatigue)
2. Psychological (self-esteem/memory)
3. Level of independence (self-care/work capacity)
4. Social relationships (social support/sexual activity)
5. Relation to environment (physical safety/health care)
6. Spirituality, religion and personal beliefs.

Influences QoL:

• “Health-related quality of life is the gap between our expectations of health and our experience of it”
  • illness considered more damaging to QoL in those who expect good health
• Demographics
• Health condition --> symptoms/absence of pain
• Treatment
• Psychosocial factors (emotions/social context)

Age:

• Early experience of illness and associated treatments --> maturation and heightened appreciation of life (post-traumatic growth)
• Age is less important than ‘life stage’ --> impact of disabling illness on QoL vary according to whether person is professionally or reproductively active
  
  • Third age: life after retirement can continue to be full of enjoyment and opportunity
  • Forth Age: when illness and disability present challenges to an older person’s independence
• Successful ageing (broad ‘lay model’): biomedical (function), broader biomedical (e.g. roles and function), social functioning (social networks and support), and psychological resources (e.g. self-efficacy, coping) models, but added in socio-economic and environmental factors

Culture & QoL:

• Cultural factors relevant to QoL:
  • Responses to pain
  • Attitudes towards and use of traditional versus Western medicines and treatments
  • Concepts of dependency
  • Use of social support
  • Culture of communication

Illness and quality of life:

• Neurological illnesses: disrupt key QoL domains --> hard to evaluate their current status against their former status in order to make meaningful QoL judgements
• PROMS (Patient-reported Outcome Measures): ‘patient-centred’ measures, describe outcomes important to them in terms of their QoL

Psychosocial influences on quality of life:

• ‘Predicts’ QoL: presence or absence of pain; the presence or absence of depressed mood; levels of social support, ethnicity and other background stressors

Coping and QoL:

• Avoidant coping: likely to be beneficial to QoL in situations where a person is unable to exert control --> approach coping in these situations could lead to frustration
• Chronic pain: require individuals to cope by means of acceptance coping or positive reinterpretation
• Positive relationships between perceived social support - coping - adjustment to chronic disease

Goals QoL:

QoL research criticised for the absence of a theoretical model around which to develop and test the QoL concept. One attempt to bring theory:

• Scheier and Carver’s self-regulation theory: process of goal attainment in the face of a disturbance such as illness
  • Event appraisal, appraisals of goal disturbance, outcome expectancies, appraisals of resources and coping processes all combine to influence QoL
• Theory of cognitive adaptation to illness: goals indirectly influence QoL outcomes by altering the ‘meaning’ a person attaches to their illness
  
  • ‘Meaning’ of illness: understanding of the implications an illness has on self, relationships with others, priorities, and future goals’.

Measuring QoL:

QoL assessment is a useful clinical practice

• Measure to inform: understanding about the multidimensional impact of illness
  • Inform interventions and best practice
  • Inform patients about treatment outcome
• Measure to evaluate alternatives: to identify which interventions have the ‘best’ outcomes
• Measure to promote communication: enable health professionals to address areas that they may not otherwise have done. Taking a more holistic view of the impact of illness or treatment --> help health care to be responsive to individual patient circumstances or needs

Generic versus specific QoL measures:

• Generic measures: allow for comparison between different illness groups, but may fail to address some unique QoL issues for that illness.
• Disease-specific measures: added value’, but they do not allow for the same amount of between-illness comparability

Individualised QoL:

Allows respondents to choose the dimensions and concerns relevant and of value to them

• ‘Q-sort’ (Stenner et al., 2003): QoL ratings obtained without using a questionnaire --> significant factors emerged that interpreted as reflecting constructs of the meaning and personal relevance of QoL:
  • Happy families
  • Standing on my own two feet
  • Emotional independence
  • Just do it
  • Life as a positive challenge
  • In God we trust
  • Staying healthy enough to ‘bring home the bacon’
• PGI – the Patient Generated Index (Martin et al. 2007): name the (five) most important areas of their life affected by their health condition. These are then rated --> highlights the subjective value of different domains
• Dynamic health assessment (DYNHA) system: adopted technology to make QoL assessment quicker
• Response shift: changes in subjective reports that may result from a reprioritisation of life expectations or recalibration of internal standards so that the construct being assessed is reconceptualised

Models of adjustment:

Facilitate attempts to gain some control or enhance self-esteem.

• Conceptualisations of adjustment to chronic disease (Stanton et al., 2001): adjustment is dynamic, degree of control or mastery over it are necessary
  • Mastery of disease-related adaptive tasks
  • Preservation of functional status
  • Perceived quality of life
  • Absence of psychological disorder
  • Low negative affect
• Acceptance: promotes adjustments being made, enable life to carry on