Week 3: Adults' experiences

HSS3103 – Experiences of Illness, Impairment, Disability, and Care

Adults’ Experiences

• Biographical Disruption: A concept derived from qualitative narrative analyses.

  • Examines how individuals interpret their illness within the context of their lives.

  • Suggests that continuity in personal biography is jeopardized; physical and performance failures result in the loss of significant aspects of self.

  • Reference: Bury M. (1982), "Chronic illness as biographical disruption. Sociol Health Illness 4:167–82."

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Key Concepts of Chronic Illness

• Chronic Illness as a Disruptive Event: This notion implies a critical situation where the norms and taken-for-granted aspects of daily life are profoundly disturbed.

  • The individual may enter a reflective stage ("What is going on here?") focusing on bodily states typically not acknowledged, prompting decisions about seeking help.

  • This leads to re-evaluating one's biography, often accompanied by questions of "Why me?" and "Why now?" as they mobilize resources in response to the altered situation.

Reactions to Chronic Illness: Perspectives by JoAnn LeMaistre (1985)

1. Attitude of Blame:

   • The chronically ill individual often feels perceived as a failure when they do not respond to modern medicine.

   • Resignation viewpoint indicates little hope for recovery.

2. Stories of Personal Triumph:

   • There are narratives of complete recovery that may not fully encompass the reality of chronic conditions.

   • How one reacts to illness is influenced by:

     • Severity of illness.

     • Available social support.

     • Pre-existing personality traits (pre-morbid).

LeMaistre’s Stages in Emotional Process of Illness:

• Stage 1: Crisis

  • Characterized by severe illness and intense fear.

  • Decreased ability to engage with others; anxiety directed inward to healing.

  • Disorientation and distorted perception of time.

  • Social support appears unhelpful (e.g., irrelevant "get well soon" cards).

• Stage 2: Isolation

  • Anxiety creates emotional stiffness, leading to feelings of being misunderstood and retreating within.

  • Isolation affects independent individuals severely, complicating interactions with friends and family.

• Stage 3: Anger

  • Involves feelings of injustice and despair directed toward self or circumstances.

  • May contemplate suicide as a result of self-blame and helplessness.

• Stage 4: Reconstruction

  • Recognizes new capabilities; begins to improve self-image.

  • Develops a cohesive sense of self within the context of changes brought on by illness.

• Stage 5: Intermittent Depression

  • Feelings of nostalgia and grief arise when comparing past routines to current limitations.

  • Characteristics include sadness due to predictive triggers (appointments, anniversaries).

• Stage 6: Renewal

  • Involves creating new opportunities through adaptive skills; signifies a shift from how life was prior to illness.

Stages of Grief (as per Bowlby)

1. Numbing: Short-lived phase of emotional derealization following traumatic events.

2. Yearning: Search for lost aspects lasting from months to years.

3. Disorganization: Experience of despair during the grieving process.

4. Greater Organization: Reorganization of emotional stability after loss.

Adults’ Experiences of Health Care

Patients' Encounter with Hospitals

• Hospitals become unfamiliar, often anxiety-inducing environments.

• Procedures can feel intimidating; cultural differences in interactions.

  • Patients may face intrusive personal questions upon first meeting caregivers.

  • Imposition of rules affecting autonomy (e.g., being woken up for checks).

Admission Procedures and Control

• Control Loss: Fundamental aspect of hospital stays, as patients relinquish autonomy over personal choices.

  • Adaptation involves regaining control.

  • Factors affecting women's satisfaction include respect, dignity, and control during their stay.

Coping Strategies

• Hospital Experiences: Interaction between patients and staff affects psychological wellbeing.

• Learned Helplessness: Result of constant struggles, leading to inaction in stressful situations.

  • Disempowering care can foster dependence.

  • Effective communication and fostering a sense of control are crucial for patient satisfaction.

Addressing Coping Mechanisms

1. Social Support: Relying on fellow patients fosters solidarity and aids coping.

   • Important for long-term stays; less relevant for point-focused care.

2. Companions: Bringing support persons into consultations improves outcomes by aiding communication and support during medical procedures.

Medical Procedures and Psychological Impacts

• Mammography: Can provoke unreasonable anxiety due to high false-positive rates.

  • Linked to diminished confidence in self-examination abilities.

• MRI Experiences:

  • Most patients cope well, but significant distress is experienced by 10%-20%.

  • Claustrophobia represents a common concern; children exhibit high levels of anxiety.

Stigma in Healthcare

• Stigmatization: A barrier to health-seeking behavior evident among marginalized communities, including Aboriginal peoples.

• Need for research and intervention strategies to address health-related stigma and improve healthcare experiences across diverse populations.