MSS27 Experiencing Chronic Illness And Disability

Question 1

Characteristics of chronic illness

Answer 1

• ongoing illness
• long-term (>3-6 months)
• caused by non-reversible pathological change
• involves some disability
• sudden / gradual onset
• uncertain
• requires training and motivation of patient to care for him/herself
• medical intervention is usually palliative (no cure)
• imply different levels of loss and change in life

Question 2

Examples of chronic illness

Answer 2

• CVS conditions
• Diabetes
• Cancer
• AIDS
• Arthritis
• Alzheimer’s

Question 3

Hong Kong situation on chronic illness

Answer 3

• overall prevalence rate of chronic illness ↑
• > 70 yo majority
• more female (53%)

Question 4

Factors contribute to ↑ in chronic illness

Answer 4

1. Better medical care
   - better emergency treatment –> ↑ survival from initial critical stage of acute illnesses / trauma
   - availability of health screening
2. Population aging
3. Change in lifestyle (unhealthy food, sedentary lifestyle)
4. Change in living environment (pollution)

Question 5

Types of chronic illness

Answer 5

1. Lived-with illness (not life-threatening)
2. Mortal illness (life-threatening)
3. At-risk illness (potential risk involved)

Question 6

Disability

Answer 6

Any condition of the body or mind (Impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation and interact with the world around them) (Participation restrictions)

Impairment:
LOSS / ABNORMALITY of psychological, physiological or anatomical structure or function

Activity limitation:
e.g. difficulty seeing, hearing, walking, or problem solving

Participation restrictions in normal daily activities:

• Disadvantage: seeking work
• Deprivation: deprived of jobs, peace of mind, sense of self-worth
• stems from ENVIRONMENT where individuals live, NOT from the individual
• -> Opportunities that a person missed due to barriers in environment

e.g. working, engaging in social and recreational activities, accessing health care and preventive services

Question 7

Possible feedback loops

Answer 7

Medical model:
Primary etiological factors
–> Physical impairment
–> Change in self-perception / expectation of others –>

Social model:

• -> Disability: functional limitation and activity restriction
• -> Deprivation / Disadvantage
• -> back to etiological factors

Question 8

Impairment vs Disability

Answer 8

Disability: not just impairment, involve more social context

Impairment does not necessarily lead to disability, depends on:

• personal factors
• environmental factors
• social labeling

Question 9

Hong Kong situation on disability

Answer 9

• overall prevalence rate of disability ↑
• > 70 yo majority
• more female (57%)

Question 10

***Impact of chronic illness / disability

Answer 10

1. Managing medical regimens
   - symptoms
   - technology
   - skills
   - compliance
2. Preventing and managing potential medical crisis
   - looking out for symptoms
3. Biographical disruption
   - independence
   - body image
   - sense of self
4. Disruption of family and social life
   - strains
   - relationships
   - social roles
   - social isolation
5. Uncertainty
   - control over course of disease
   - pre-diagnostic
   - trajectory
   - fluctuation in symptoms
6. Cost of being chronically ill
   - service
   - medication
   - patient
   - family

Question 11

How chronic patients manage medical regimens

Answer 11

1. Managing symptoms and manifestations
2. Coping with medical technology
3. Learning new skills and gain useful information
4. Problems on compliance
   - overwhelmed by realizing treatment adherence is life-long commitment
   - interfere with job / other activities

Question 12

Prevent and manage potential medical crisis

Answer 12

always on lookout for signs that indicate impending medical crisis
–> always worrying

Question 13

Biographical disruption

Answer 13

1. Loss of personal independence
   - feeling guilty being a burden
2. Changes of body image
   - impairment may result in distortion of body image
3. Impact of sense of self
   - interruption in life
   - intrusive illness
   - immersion in illness

Question 14

Disruption of family and social life

Answer 14

1. Strains on family members due to provision of high level of care and support
2. Change in family roles / relationships
3. Withdrawal from key social roles
4. Social isolation

Question 15

Uncertainty

Answer 15

1. Difficult to exercise control over course of disease
2. Pre-diagnostic uncertainty
   - vague symptoms persist for years before diagnosis
3. Trajectory uncertainty
   - difficulty predicting course and outcome
4. Symptomatic uncertainty
   - day-to-day fluctuations in symptoms

Question 16

Cost of being chronically ill

Answer 16

1. Health care services and medication

2. Cost on patient and their family

Question 17

Factors affecting experience of chronic illness and physical impairment

Answer 17

***SOSV

1. Severity
2. Onset
   - birth/infancy
   - sudden/unexpected
   - slow/gradually worsening
3. Stability
4. Visibility

Question 18

How can we help patients

Answer 18

1. Information support
   - discuss diagnosis and treatment plan at the same time
   - amount of information give should match patient’s preference
2. Emphasize patient’s role and shared responsibility for management of their condition
3. Empowerment through self-care management
4. Attentiveness to individuality
5. Continuity care
   - multidisciplinary care