Unit 4: Chronic illness and caregiving

Chronic illness

Lasts longer than six months, rarely cured, requires ongoing management.

Acute illness

Sudden onset, short duration (often under a month), usually resolves with treatment.

Families as the "invisible health-care system"

Family caregivers provide most long-term care, often unpaid and unsupported.

Chronic illness as a family crisis

Disrupts system equilibrium; families must reorganize roles, routines and expectations.

Rolland's Chronic Illness Framework: 5 factors

Onset, level of disability, outcome, stability/course, and time phase.

Onset (Rolland)

Sudden onset (e.g. stroke) causes shock/crisis; gradual onset (e.g. MS) allows more time to adapt.

Level of disability (Rolland)

Greater functional impairment increases caregiver burden and stress.

Outcome (Rolland)

Fatal vs non-fatal; life-threatening prognosis may cause anticipatory grief.

Stability/course (Rolland)

Progressive (Alzheimer's), episodic (MS), or stable (well-managed asthma).

Time phases in the lecture slides (Rolland)

Crisis, chronic ("long haul"), and terminal.

Crisis phase

Prediagnosis with symptoms, diagnosis, and initial adjustment period.

Terminal phase

Preterminal period, death, and mourning/resolution of loss.

Phases named on the midterm study guide

Stable, unstable, acute and crisis (these labels are not defined in the lecture slides).

Caregiver burden

Perceived strain from caregiving; common and often relieved with support.

Caregiver burden progression

Burden → prolonged stress → burnout.

Caregiver burnout

Physical, emotional and mental exhaustion from unmanaged caregiving stress over time.

Key signs of caregiver burnout

Persistent exhaustion not relieved by rest, withdrawal, resentment toward care recipient, reduced functioning.

Burnout is not...

A personal failure; it is a predictable risk of prolonged stress, poor support and unrealistic expectations.

Extreme risk of burnout

Harder to treat and may lead to abuse of the care recipient.

Managing burnout

Set boundaries, take breaks, self-care, support groups, ask for help, seek professional care, respite.

Compassion fatigue (Unit 4 context)

Emotional impact of ongoing exposure to another's suffering; may involve secondary traumatic stress.

Scenario: Tired after a hard day vs persistent exhaustion, withdrawal and resentment

Only persistent exhaustion, withdrawal and resentment is concerning for burnout.

Scenario: Spouse caring for partner with MS, working full-time, caring for two kids, can't meet any demand

Role overload.

Role strain (Unit 4)

Difficulty meeting expectations of one particular role.

Role overload (Unit 4)

Too many roles/responsibilities competing for time and energy.

Positive outcomes of caregiving

Giving back, fulfilment, personal growth, meaning, new skills, stronger relationships, empathy.

Family resilience (chronic illness)

Adapting roles, finding a "new normal," illness as a shared challenge, keeping supports, recognizing strengths.

Resilient families...

Integrate illness tasks into routine, acknowledge illness without letting it dominate, stay flexible.

"Health police"

Using pressure, criticism, anger or guilt about the illness; resilient families avoid it.

"We are in this together"

Viewing the illness as a family problem rather than an individual one.

Scenario: "We've had to change how we do things, but we're finding a new routine"

Family resilience.

Communication challenges in chronic illness

Avoiding the topic to protect others, suppressed emotions, unspoken role shifts, excluding children/elders.

Sibling feelings with a chronically ill child

Guilt about being spared, pressure to be "good," resentment, loss, isolation, shame, extra responsibilities.

Parent stressors (child with chronic illness)

Routine changes, grief, financial strain, uncertain future, recurrent crises, social isolation.

Gender differences in caregiving

Women provide most unpaid care and more personal/emotional care, with higher burden and burnout.

Young carers

Youth (15-24) providing care; about 1 in 5; under-reported and under-recognized.

Why young carers go unnoticed

Many do not self-identify as "caregivers."

Young carer risks

Role strain, interrupted development, school and social impacts, anxiety, depression, burnout, PTSD.

Cultural influences on caregiving

Culture shapes family values, roles, illness beliefs and willingness to seek outside help.

Collectivistic orientation (caregiving)

Emphasis on family responsibility, elder respect, caring within the home and keeping problems private.

Collectivistic risk

Family honour and unity beliefs may discourage outside help and blur boundaries.

EI caregiver benefits

Child up to 35 weeks; adult up to 15 weeks; compassionate (end-of-life) up to 26 weeks; replaces ~55% of earnings.

Public Guardian and Trustee (PGT)

BC body protecting vulnerable people who lack legal capacity.

Representation Agreement

Appoints a representative for health, personal care and routine financial decisions if incapable.

Advance Directive (living will)

Written healthcare wishes if incapable (e.g. life support, resuscitation, artificial nutrition).

Power of Attorney

Appoints an attorney for financial and legal decisions; does not cover healthcare decisions in BC.

Committee (committeeship)

Court-appointed decision maker when an incapable adult made no prior legal plans.

RPN assessment in chronic illness

Life cycle stage, illness time phase, illness beliefs, supports, culture, burnout, children as carers, strengths.