adapting to chronic illness
DESCRIPTION
Illnesses that were once considered terminal are increasingly being treated as chronic medical conditions that develop over the long term. Advances in medical science have improved treatment options for people suffering from chronic conditions that develop over the long term. These individuals also enjoy higher life expectancy. A primary consequence of this evolution is that, rather than prepare to die, individuals diagnosed with a major chronic illness are faced with the challenge of learning how to adapt over the long term. Rather than rely on traditional stage-based approaches, which assume that adaptation progresses in linear fashion, we suggest a task-based approach. Task-based models focus on the process of reconstruction of the diagnosed person’s personal, professional and social worlds. These approaches do not prescribe a specific path towards adaptation; rather, they provide a framework through which to understand the process of recovery.TRANSCRIPT
Dr. André Samson, PhD
& Noah M.P Spector, M.S.W. Faculty of Education University of Ottawa
Psychosocial adaptation to major chronic illness:
The Task Based Model
Introduction: Tracking a New Reality
The past
• Not so long ago a diagnosis of cancer, HIV/AIDS infection or a heart condition could be perceived as a death sentence.
Present context
• Indeed, a large number of illnesses, once considered terminal, are now treated as chronic medical conditions, which is to say that they develop over the long term.
An example
• For example, until 1995, a Human Immunodeficiency Virus (HIV) diagnosis was equivalent to a death sentence. Today, HIV infection is categorized as a chronic illness
(Samson & Siam, 2008)
Introduction: Tracking a New Reality
In 1995 1493 people died as a result of an HIV infection in Canada. In comparison, 45 people died of the same cause in 2008 ( Public Health Agency of Canada, 2010)
Mortality due to all chronic illnesses fell from 794 per 100 000 inhabitants in 1984 to 622 for 100 000 in 2001 (Public Health Agency of Canada, 2004).
The rate of deaths per 100 000 inhabitants between 1984 and 2000 dropped from 358 to 177 for diseases of the circulatory and 222-117 for ischemic heart disease (Public Health Agency of Canada, 2011).
Introduction: A call to adapt
individuals diagnosed with a major chronic disease must learn how to adapt to their illness over the long term.
A primary consequence of the decrease in mortality and the subsequent increase in people living with a chronic illness is that:
rather than prepare to die,
Introduction: What is adaptation?
Therefore, .“to adapt.” literally means to move
towards a suitable outcome
or resolution.
“ to adapt.” stems from the Latin roots “ad”,
which means “towards.”, and “aptus.”, which
signifies “apt,” in the sense of something that
is suitable.
Successful adaptation involves restoring a sense of normalcy to one’s everyday life,
“normalcy” is defined by patients according to
their perceived needs and situations.
1. Competing Theoretical Models
The predominant theoretical models to describe the adaptation to major life transitions in general and to the onset of chronic illness in particular
can be grouped into two main paradigms:
The first paradigm proposes the notion that individuals adapt by moving through a set of phases.
An example of this theoretical paradigm is Dr. Kübler-Ross’ stage-based model which has had a
particularly important impact on the field of palliative care.
The second paradigm revolves around the notion that adaptation to change is achieved
by accomplishing a nonlinear series of adaptive tasks.
Examples of this paradigm include the work of Corr (2003), Moos and Tsu
(1997), Cohen and Lazurus (1984) and Samson and Siam (2008).
1. Competing Theoretical Models 1.1 Critiquing stage based approaches
Staged-based approaches have been critiqued because of their rigid linearity. In other words, they are seen as imposing a prescriptive way to adapt.
This normative aspect does not take the highly subjective and individual nature of adaptation processes into consideration.
The use of stage-based approaches may therefore lead to the exclusion of those patients who do not follow these predetermined stages, as well as to the imposition of unfounded expectations on the medical personnel.
1. Competing Theoretical Models 1.2 A Promising Alternative
The second paradigm revolves around the notion that adaptation to change is achieved by accomplishing a non-linear series of adaptation tasks (Samson 2006; Corr et al, 2003; Corr, 1992; Cohen & Lazarus, 1979; Moos & Tsu, 1977).
This approach to adaptation appears to present a more effective alternative to the process of psychosocial adaptation to chronic illness.
1. Competing Theoretical Models 1.3 Task based model: core assumptions
• The process of adaptation to chronic illness is highly individual.
• The task-based model does not delineate an ideal way to adapt – the ideal manner being the one that the patient chooses to follow.
Assumption # 1: Highly individual
• Essentially phenomenological and transactional in nature.
• Through cognitive appraisal, patients continually evaluate and re-evaluate the impact of chronic illness on different aspects of their everyday lives.
• The importance given to cognitive appraisal underlies the highly individual nature of this adaptive process.
Assumption # 2: Cognitive and transactional
1. Competing Theoretical Models 1.3 Task based model: core assumptions
• Individuals possess an innate drive to achieve, and subsequently maintain, social and psychological homeostasis with the objective of regaining a sense of normalcy and satisfaction in life (Moos & Tsu, 1977).
Assumption # 3: Regaining a sense of normalcy
• The process of adaptation usually revolves around the reconstruction of aspects of the patients’ lives that have been affected by the onset of chronic illness.
• Through this process of reconstruction, patients attempt to regain a sense of control over their lives
Assumption # 4: Regaining a sense of control
• Patients reach a positive outcome when they successfully reconstruct and reintegrate the aspects of their lives that have been affected by the onset of chronic illness.
• Negative outcomes occur when patients are unable to cognitively appraise their diagnosis as a challenge that can be overcome.
Assumption # 5 : The outcomes
1. Competing Theoretical Models 1.3 Task based model: core assumptions
2. The Task-Based Model: 5 components
1. Source of Stress
2. Cognitive Appraisal
3. Adaptive tasks
4. Coping Skills 5. Outcome
The Integrated Adaptive Model
Source of stress
Diagnosis
Background and personal characteristics
Primary cognitive appraisalEvaluation of the significance of an event: event seen as threat
Secondary cognitive appraisalEvaluation of resources: event seen as challenge
Adaptive Tasks
Coping SkillsInformation seeking, goal-setting, denying, taking action, minimizing, cognitive processes, requesting support, etc…
Outcome
Positive Outcome
New state of psycho-social equilibriumNegative Outcome
Psychological deterioration and decline
Physical
Meet requirements as prescribed
Comply with various treatment procedures
Relational
Seek social support
Establish meaningful relationships
Vocational
Reintegrate into work environment
Vocational rehabilitation or volunteer work
Spiritual
Find meaning
Develop a sense of hope
Psychological
Re-establish emotional balance
Positive self-image
Sense of control
- Click on each task to see details
2. The Task Based Model 2.1 Component 1: Source of Stress (The diagnosis)
• When an individual is given the news that they have been diagnosed with a major chronic illness (source of stress) this diagnosis often provokes a crisis.
• Following this diagnosis, the initial process of adapting to a chronic illness relies on how the stressor (i.e. the diagnosis) is perceived.
• Therefore, the same diagnosis can be appraised in different ways depending on the circumstances of a particular individual.
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2. The Task Based Model 2.2 Component 2: Cognitive Appraisal
Cognitive appraisal regarding a diagnosis of chronic illness can be classified into two categories: (a) primary appraisal and (b) secondary
appraisal.
Secondary appraisal marks an evolution in cognitive
appraisal; the diagnosis is now perceived as a challenge that
requires adaptive efforts.
Primary appraisal encompasses initial psychological reactions such as denial, fear, resentment
anxiety or even anger
2. The Task Based Model 2.2 Component 2: Cognitive Appraisal
• Cognitive assessment of the diagnosis determines the trajectory of the whole process of adaptation (Cohen & Lazarus, 1979).
• As the diagnosis and its consequences become part of everyday life, the initial shock fades.
• Secondary cognitive appraisal emerges from this evolution in which the chronic illness is increasingly perceived as a challenge to overcome.
• The individual then begins to reconstruct their life through adaptive tasks.
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2. The Task Based Model 2.3 Component 3: Adaptive Tasks
Adaptive tasks encompass the principal aspects of human functioning that allow the process of adaptation to occur.
The adaptive tasks are of a physical, psychological, social, spiritual and vocational nature.
The person gradually accomplishes these adaptive tasks and can perform either one task or several at a time.
The accomplishment of these five adaptive tasks can be achieved simultaneously or in succession, with the accomplishment of a specific
task potentially facilitating that of another.
This process may vary from one individual to the next, depending on their appraisal of the illness, their personal situation and overall coping skills.
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2. The Task Based Model 2.3 Component 3: Adaptive Tasks 2.3.1 The Physical Task
Meeting medical
requirements
Compliance to various treatment
procedures
Seeking information
about the illness
Maintaining a healthy lifestyle
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2. The Task Based Model 2.3 Component 3: Adaptive Tasks 2.3.2 The Psychological Task
Therefore the psychological task implies maintaining satisfactory emotional equilibrium and regaining a sense of control over one’s life.�
Consequently, living with a chronic illness can negatively effect a patient’s perception of themself.
Persons living with a chronic illness may face a certain degree of uncertainty, anxiety and a change in their physical appearance/ abilities.
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2. The Task Based Model 2.3 Component 3: Adaptive Tasks 2.3.3 The Social Task
• Chronic illness may trigger stigmatization and social isolation
• In this context, the social task means gaining effective support from significant others.
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2. The Task Based Model 2.3 Component 3: Adaptive Tasks 2.3.4 The Spiritual Task
The onset of chronic illness may confront
patients prematurely with
their own finitude.
Seeking meaning may become a
necessity.
The completion of the spiritual task can play a
role in the process of
adaptation to chronic illness.
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2. The Task Based Model 2.3 Component 3: Adaptive Tasks 2.3.5 The Vocational Task
Given the advancements in medical knowledge, patients living with chronic illness are increasingly capable of maintaining an active lifestyle and engaging in meaningful activities.
Career, or different life roles, whether paid or unpaid, remains for most people a preferred way of expressing themselves and integrating into society.
Through the vocational task, which includes work that is both paid and unpaid, patients may resume their professional occupations, give a new orientation to their career or get involved in volunteer work.
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If adaptive tasks are seen as the general domains of adjustment, then coping skills may be understood as the specific means to accomplish these tasks.
These skills embody both cognitive and behavioural components.
Some examples of coping skills:
Denying or minimizing the seriousness of a crisis,
seeking relevant information,
learning specific illness related procedures.
2. The integrated model 2.4 Coping Skills
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Positive Outcome: A new state of psychological equilibrium.
Negative Outcome: Psychological
deterioration and decline.
2. The integrated model 2.5 Outcome
Conclusion
• Adaptation to major chronic illness is a highly individual process.
• The task-based model takes into account the fact that each individual cognitively appraises the onset of illness in a unique manner.
• Consequently, individuals adapt in unique ways depending on the psychosocial contexts of their lives.