PSYCHOSOCIAL ASPECTS OF CHRONIC ILLNESS AND DISABILITY Terms

PSYCHOSOCIAL ASPECTS OF CHRONIC ILLNESS AND DISABILITY

Terms The term disease is derived from the medical model, which refers to changes in the structure or function of body systems. The medical model focuses on the treatment and elimination of symptoms. The term illness refers to individuals’ perception of their symptoms and how they and their families respond to these symptoms

IMPACT OF CHRONIC ILLNESS AND DISABILITY Ø Ø Professionals must understand the symptoms, limitations, and progression of a condition in order to facilitate individuals’ adaptation to their condition and to maximize their potential for functioning. Chronic illness and disability affect all facets of life, including: social and family relationships economic well-being activities of daily living recreational and vocational activities.

People vary in their tolerance to symptoms, their functional limitations, and their general ability to cope with chronic illness and disability factors: physical and emotional traits, roles, and responsibilities. Depending on individuals’ perception and the circumstances involved, change may be positive or negative, but it always requires some adjustment or adaptation and thus produces a certain degree of stress.

STRESS IN CHRONIC ILLNESS AND DISABILITY ü ü ü Chronic illness and disability produce significant change and consequently stress because individuals must deal with a change of: customary lifestyle loss of control disruption of physiological processes pain or discomfort potential loss of role, status, independence, and financial stability.

The degree of stress associated with chronic illness or disability often is related to the degree of threat it represents to individuals.

Ø Ø Ø Ø Potential threats of chronic illness or disability include: threats to life and physical well-being threats to body integrity and comfort threats to independence, privacy, autonomy, and control threats to self-concept. threats to life goals and future plans. threats to relationships with family, friends, and colleagues threats to the ability to remain in familiar surroundings threats to economic well-being.

Continue; Ø Stress can be interpreted from the behaviors exhibited by those experiencing chronic illness or disability. When demands exceed psychological, social, or financial resources, stress may be manifested in a variety of ways, such as: Ø Ø noncompliance with treatment, self-destructive behaviors (substance abuse, hostility, depression, or other harmful responses).

COPING STYLE AND STRATEGIES Coping mechanisms are learned and developed over time. People use coping style to reduce anxiety and restore equilibrium when confronted with a stressful situation. Coping behavior is effective and adaptive when it helps to reduce stress. It is ineffective and maladaptive when it contributes to physical or mental deterioration.

Denial. Regression. Compensation. Rationalization. Diversion of Feelings(diversion of unacceptable feelings or ideas into socially acceptable behaviors. )

EMOTIONAL REACTIONS TO CHRONIC ILLNESS OR DISABILITY Grief. Fear and Anxiety. Anger. Depression. Guilt.

OTHER ISSUES IN CHRONIC ILLNESS AND DISABILITY Self-Concept. Individuals perceptions and beliefs about their own strengths and weaknesses. (positive/negative) Self-Esteem. defined as “the evaluative component of an individual’s self concept Body Image. an important part of self-concept. involves individuals’ mental view of their body with regard to appearance and ability to perform various physical tasks. Stigma

The Impact of Uncertainty

The Impact of Uncertainty Often related � to concerns about an unknown future � Inconsistent symptoms � Unpredictability of the progression of the disease � Ambiguous symptoms Depends on the characteristics of a certain chronic illness or disability � Static vs. variable � Periods of remission � Slow vs. Rapid deterioration � Difference in rate of change from one individual to another

The impact of uncertainty – Cont. Affect planning and prediction � Frustrating to the individual and caregivers Inability to predict the future sometimes become more disabling than the actual physical consequences of the condition itself Uncertainty can be a major source of stress � Living in the present, rather than dwelling on events that may or may not occur, can help to reduce stress and anxiety and enhance the quality of life.

Invisible Disability

Invisible Disability The visibility of a condition has often been associated with stigmatization and marginality Invisible disability: no outward physical signs or other cues to indicate limitations associated with chronic illness or disability Prejudice or stereotypes vs. deny or avoid acceptance of condition and associated implication Adjustment and acceptance of limitations

Sexuality

Sexuality is intrinsic to a person’s sense of self � Affects body the way individuals view themselves and their Part of identity, self-image, and self-concept. Sexuality can be affected by � Physical limitations � Depression � Lack of energy � Pain � Alteration of self-image � Reactions of others

Family Adaptation

Family Adaptation “Family” has different meanings for different people and is not always based on blood or law Each individual within the family structure plays some role that is incorporated into everyday family life. Emotional and economic impact on families Family reaction to chronic illness/disability

Family Adaptation – Cont. The way in which families react and adapt to chronic illness and disability affects an individual’s subsequent adjustment � � � Independence vs. dependence Acceptance vs. rejection Encourage or sabotage compliance Advocates for the individual Home programs � � � Physical care, supervision, transportation, etc. Fatigue (because of extra responsibilities) Emotional strain Financial burden Role change (level of support)

Quality of Life

Quality of Life (Qo. L) Quality of life is subjective in nature and has no universal meaning. No two people define the term in quite the same way Individual value systems, cultural backgrounds, spiritual perspectives, and the attitudes and reactions of those within the environment all influence the interpretation of quality of life.

Quality of Life (Qo. L) – Cont. People with similar conditions, symptoms, and limitations may perceive their condition in totally different manners Determining factors � characteristics of the condition and its treatment � the age and developmental stage of the individual � the degree of limitation and the extent of disability experienced � how characteristics of the condition affect the individual’s definition of quality of life

Quality of Life – Cont. Ambiguous nature --- Hard to assess � multiple indicators Ranging from physiological parameters to the ability to return to work to the ability to participate in social activities and the number of psychological problems experienced by the individual Qo. L is determined by the degree of control individuals have over their life circumstances or destiny � Qo. L can be enhanced by Accurate knowledge of condition and treatment Active participation in decision making about management

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