The illness narrative Flashcards
What is narrative
- An account of events occurring over time
- An arrangement of both the ordinary and exceptional events of life
- Function as a window/mirror to our inner emotional, relational, and psychological worlds
- Make the inexplicable comprehensible
- Make sense of our lives as they are
- Narrative is how we understand the broader world in relation to ourselves
- How we arrange events in our life
- How human beings ‘tick’
- Narrative describes what our lives are like and how we go about it
- Making sense of our experiences and the world around us
The illness narrative
- Onset of illness or injury causes biographical disruption
- Threat to sense of self/identity
- Invokes suffering in various dimensions of personhood
- Storytelling as a way of making sense of illness and interpret the significance/implications
- Each person’s illness narrative as wholly unique
- Illness/injury can change our sense of self and our lives up onto that points
- Threatens our sense of wholeness; leads to forms of suffering
- Storytelling is a way of explaining that disruption and helps makes sense of it
- A way that people can reach out of the isolation of illness with hope of reconnecting with other people
- The illness narrative; a way to weave together their illness through their daily problems; meshes a disease process through daily life; what it means for the person
- We really need to understand this if we are to promote healing and recovery
Ways of knowing; first way (“illness”
- Subjective, contextually-situated
- “Illness”
- Contextually contingent, culturally situated and in a constant state of evolution
- Lived experience of illness is inherently unknowable to the outsider unless it’s conveyed by the afflicted in a narrative account
- The subject is the expert of illness
- First way of knowing; subjective, contextual-contingent; only conveyed through storytelling
- The experienced illness is about how it’s impacting my daily life; it’s messy and inherently unknowable to the outsider until told about through narrative
- We can’t know any of those things unless we hear from that person
Ways of knowing; the second way (“disease”)
- Objective, rational, empirical
- Focused on cause/effect
- “Disease”
- Clinical recognition of problems limited to alterations in biological structure or functioning
- Clinician as expert
- Second way of knowing; objective, distills the experience down to something that is knowable, treatable, and physiological to the body
- Conditions to shield us to the chaos and messiness of illness
- The patient’s experience is considered separate to the illness
- The concept of disease does not recognize the identity of illness and the shifts that occur
- They are inherently meshed; disease vs illness but often are separated
Interpretation of illness; medicalization of the patient’s experience
- Objectifying and medicalizing the patient’s experience
- By doing that we miss this whole realm that we could be attending to alleviate suffering
- This suffering is located in the story of illness
Subjective and objective forms of knowledge act synergistically in the pursuit of curing and/or healing the patient
- Venn diagram of curing and healing
1) Subjective, embodied knowledge
2) Objective, biomedical knowledge - You can’t have one without the other
- I can never make sense of someone’s experience, that can only be done by the individual, but I can help provide the space and listening for them to do this
- Our healthcare system is defined to help us focus in the one particular directions
- It’s the two working together that help us heal the client
- We don’t know how to help someone until we find out what they need help with
Hearing our patient’s stories of illness
- Engages us in a relationship of mutual knowing
- Allows empathic witnessing of existential experiences of suffering
- Re-orients care towards practical coping
- It provides with an opportunity to really understand what the person is experiences
- Also, for the person to understand what we have to offer them in support related to these struggles
- Space for the articulation of suffering
- Opportunity to share that story, be heard, and validated in that experience
- What their goals/fears/hopes are and do the work to support it
The lived experience of the patient’s illness
- Meaning of symptoms
- Cultural significance as meaning
- Personal and interpersonal significance
- Patient and family explanatory models
The lived experience of the patient’s illness; the meaning of symptoms
- We experience this in a deeply subjective way; shaped by our sense of self and culturally shaped
- The meaning we assign to the changed in our body are filtered through this shared common sense of knowledge (in context)
- These truths that we share culturally are actually locally conceived ideas (historically and culturally contingent)
- Translated into a biomedical
- If you look deep beneath those, the meaning for that individual is actually quite different and unique
The lived experience of the patient’s illness; cultural significance as meaning
- The ways in which disease related cultural discourse is used to shape the description of illness
- i.e. the positivity of cancer
- this shapes the everyday experiences of individuals
The lived experience of the patient’s illness; personal/interpersonal significance
- Can be related to employment, finances, ADLs, etc.
The lived experience of the patient’s illness; patient/family explanatory models
- What the patient or family believed caused whatever’s going on
- What they want done about it
- Important to think about all of these things when we’re taking about the illness narrative
Kleinmann’s eight questions
1) What do you call the problem (the illness, the reason you or your family member is in the hospital, etc.)?
2) What do you think has caused the problem (what has made this illness appear)?
3) Why do you think it started when it did? (an important difference from “how long has this been going on?)
4) What do you think the sickness does? How does it work?
5) How severe is the sickness? Will it have a short or long course?
6) What kind of treatment fo you think that you or your family member should receive? What are the most important results you hope for from this treatment?
7) What are the chief problems the sickness has caused?
8) What do you fear most about this sickness?
- Important to think about and talk about how this humanizes the experiences of illness
- Reflect on how these conversations of illness effects a patient
Therapeutic practice
- Presence through attunement through:
- Wondering
- Following
- Holding
- Ways of thinking, ways of being, and acting
- Last week discussed attuning to others
- Be curious of patients’ story and curious about what they have to teach you
Practice of wondering
• Wondering is a relational practice of curiosity
• Helps us stay open and not rush to conclusions
• Allows us to discover the unexpected by:
– Viewing a situation from several perspectives
– Seeing information presented in a situation as novel
– Attending to the context in which we are perceiving the information
– Creating new categories through which this information may be understood
- Exploring that of what we don’t understand, meeting the individuals needs and supporting them
- Discover the unexpected, think about things from many different perspective
- Helps us have humility as practitioners
