Dr. André Samson, PhD & Noah M.P Spector, M.S.W. Faculty of Education University of Ottawa

1. Psychosocial adaptation to major chronic illness: The Task Based Model Dr. André Samson, PhD& Noah M.P Spector, M.S.W. Faculty of Education University of Ottawa

2. 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)

3. 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).

4. Introduction: A call to adapt • 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, • individuals diagnosed with a major chronic disease must learn how to adapt to their illness over the long term.

5. Introduction: What is adaptation? • Successful adaptation involves restoring a sense of normalcy to one’s everyday life, • “ to adapt.” stems from the Latin roots “ad”, which means “towards.”, and “aptus.”, which signifies “apt,” in the sense of something that is suitable. • “normalcy” is defined by patients according to their perceived needs and situations. • Therefore, .“to adapt.” literally means to move towards a suitable outcome or resolution.

6. 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. • The second paradigm revolves around the notion that adaptation to change is achieved by accomplishing a nonlinear series of adaptive tasks. • 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. • Examples of this paradigm include the work of Corr (2003), Moos and Tsu (1997), Cohen and Lazurus (1984) and Samson and Siam (2008).

7. 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.

8. 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.

9. 1. Competing Theoretical Models 1.3 Task based model: core assumptions • Assumption # 1: Highly individual • 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 # 2: Cognitive and transactional • 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.

10. 1. Competing Theoretical Models 1.3 Task based model: core assumptions • Assumption # 3: Regaining a sense of normalcy • 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 # 4: Regaining a sense of control • 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

11. 1. Competing Theoretical Models 1.3 Task based model: core assumptions • Assumption # 5 : The outcomes • 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.

12. 2. The Task-Based Model: 5 components • 1. Source of Stress • 2. Cognitive Appraisal • 3. Adaptive tasks • 4. Coping Skills • 5. Outcome

13. The Integrated Adaptive Model Source of stress Diagnosis - Click on each task to see details Background and personal characteristics Primary cognitive appraisal Evaluation of the significance of an event: event seen as threat Secondary cognitive appraisal Evaluation of resources: event seen as challenge Adaptive Tasks • Psychological • Re-establish emotional balance • Positive self-image • Sense of control • Relational • Seek social support • Establish meaningful relationships • Physical • Meet requirements as prescribed • Comply with various treatment procedures • Spiritual • Find meaning • Develop a sense of hope • Vocational • Reintegrate into work environment • Vocational rehabilitation or volunteer work Coping Skills Information seeking, goal-setting, denying, taking action, minimizing, cognitive processes, requesting support, etc… Outcome Positive Outcome New state of psycho-social equilibrium Negative Outcome Psychological deterioration and decline

14. 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. Click here to go back to the integrated model

15. 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. • Primary appraisal encompasses initial psychological reactions such as denial, fear, resentment anxiety or even anger • Secondary appraisal marks an evolution in cognitive appraisal; the diagnosis is now perceived as a challenge that requires adaptive efforts.

16. 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. Click here to go back to the integrated model

17. 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. Click here to go back to the integrated model

18. 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 Click here to go back to the integrated model

19. 2. The Task Based Model 2.3 Component 3: Adaptive Tasks 2.3.2 The Psychological Task • Persons living with a chronic illness may face a certain degree of uncertainty, anxiety and a change in their physical appearance/ abilities. • Consequently, living with a chronic illness can negatively effect a patient’s perception of themself. • Therefore the psychological task implies maintaining satisfactory emotional equilibrium and regaining a sense of control over one’’s life. Click here to go back to the integrated model

20. 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. Click here to go back to the integrated model

21. 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. Click here to go back to the integrated model

22. 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. Click here to go back to the integrated model

23. 2. The integrated model 2.4 Coping Skills • 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. Click here to go back to the integrated model

24. 2. The integrated model 2.5 Outcome • Positive Outcome: A new state of psychological equilibrium. • Negative Outcome: Psychological deterioration and decline.

25. 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.