Infectious disease: Life impact Flashcards
Disease
a change in bodily structure or function viewed from pathophysiological model
Illness
a human experience of suffering or dysfunction
Disease vs. Illness - what is central to our experience of it
how we make meaning of an illness
what we tell ourselves and what other people are saying too
Acute illness characteristics
episodic
pt is inexperienced and passive
cure is commonly possible
Chronic illness characteristics
continuous
pt is often expert, plays active role in course of tx
cure is rare
often involves multiple specialists and coordination of care is often an issue
Factors influencing response to illness
Meaning or significance assigned to illness
Severity of illness and how impacts function
Degree to which is visible vs. invisible
Level of support
Prior experience with caregivers and vulnerability
Degree of disease stigma
Sociocultural beliefs around illness
Potential emotional consequences of chronic illness
Helpless Worthless Social isolation Feeling controlled or betrayed by one's body Lack energy for social involvement Fear of being a 'complainer' Emotional consequence Fear of losing rationality Exhaustion
Body Image - significant source of self worth for many people is what
feeling capable and attractive
Chronic illness is a major threat to this!
Body image - highly visible signs of illness can lead to
reactions of disgust or withdrawal
Both appearance and functional limitations can modify a pt’s body image
Body image - pt interaction
sexual function is a profound loss for many
pt may not volunteer this info
important, but difficult, to allow pts to talk about their losses
Societal responses to chronically ill patients
chronic illness does not get granted the sick role status as an acute illness would
Little tolerance for ongoing disability
Societal responses to chronically ill patients - stigma
Healthy people often hold the “just” world hypothesis - threatened when good people get sick
Disease seen as self inflicted has higher stigma (AIDS)
Pt may avoid acknowledging or seeking tx
Need for legitimization
Pt often need permission to move into sick role and have accommodations made
Some diseases that aren’t well understood may lead to frustration from pt
Pt may doubt their own experience of the illness
Risk of being labeled as hypochondriac or malingerer (fibro, chronic fatigue)
Helping pt regain sense of control
Miller (2000)
Modify environment to inc pt control
Help them develop realistic goals
Max their knowledge of the illness and how to manage it best
Inc sensitivity of providers and loved ones to inc pt sense of powerlessness
Encourage pt to talk about feelings
Emotionally supporting the pt
Non judgmental, empathetic, well informed
Accept care rather than cure as positive outcome
Respect them as a partner in CDM - max their control
Be attentive to pt goals
Culturally sens
Language pt understands
Full range of possible outcomes discussed with pt (give specific examples)
Be aware of your own reactions (as PT) and manage them - self care!
Ways of providing care when cure is not possible
Be present - hear their story
Success is being present
Allow silence in your pt encounters
Learn from your pts
Be curious
Be a companion (dont have to be the guide)
Tx pt voice as equal important to your own
Hep C - stigma
Can block people from getting tested and disclosing their status to others
Stigma negatively impacts tx seeking and tx adherence
Stigma reduction requires multilevel, multifaceted approach
