6.2 Caregiver burden and distress

Question 1

What 2 factors have increased the burden and duration of caregiving for families?

Answer 1

1. Trends toward longer survival
2. More ambulatory and home care of patients with advanced disease

Question 2

Define caregiver capacity

List 4 factors to consider when assessing caregiver capacity to provide home care

Name one thing that has been shown in build caregiver capacity

Answer 2

1. caregiver’s ability and willingness to provide care at home
2. caregiver’s:
   -physical health
   -living arrangements
   -language fluency
   - and concrete evidence of capacity (i.e. follows care plan, calls nurses with concerns)
3. Good relationship with home care nurses (i.e. more likely to apply suggestions)

Question 3

What do we know about the prevalence and severity of psychological distress in caregivers?

Answer 3

1. Highly prevalent (>80% of caregivers in one study, 5x higher than gen pop) and
2. often severe enough to meet criteria for a psychiatric disorder (anxiety, depression, PTSD, ETOH dependence)

**caregivers report higher distress than even patients themselves

Question 4

List 2 demographic, 2 psychosocial, and 2 patient-related risk factors for psychological distress in caregivers

Answer 4

Table 6.2.1.

1. Demographics:
   - female
   - young
   - active employment
   - low physical function
2. Psychosocial:
   -emotion focused coping style (rather than task focused)
   - low self-efficacy
   - low social support
   - self silencing (dismiss own needs due to shame/guilt)
   - anxious or avoidant attachment style
   - marital dissatisfaction
3. Patient variables:
   - low physical and psychological QOL
   - patients who died in hospital/ICU (more caregiver PTSD or PGD vs if pt died at home)

PGD= prolonged grief disorder

Question 5

List 2 caregiver experiences that can predict severe grief/psychiatric symptoms during the bereavement period

Answer 5

1. High anticipatory grief
2. Spiritual distress

(*major financial distress also contributes to stress + poor QOL)

Question 6

List 2 ways in which caregiver burden/distress impacts the physical health of caregivers.

Answer 6

1. Caregivers of patients with advanced disease have worse physical health than gen pop or caregivers of chronic illness pt
2. Sleep disturbance –> leading to poorer health and anxiety

Question 7

Caregiver interventions can improve caregiver well being AND increase the likelihood of home death/at location of choice for patients.

List 3 interventions for caregiver burden/distress

Answer 7

1. psycho-education (adjustment depends on cognitive appraisal of stressors)
2. Informational resources to help prepare them for caregiver role
3. Mindfulness programs in group format
4. Counselling for patient-caregiver dyad (improve interpersonal connection)
5. Dignity therapy to improve pt/caregiver connection

Question 8

Describe the phenomenon known as benefit-finding or post-traumatic growth

List 3 possible benefits of caregiving

Answer 8

positive psychological change that results from facing challenging life situations

• increased self-confidence
• ability to appreciate the present
• ability to value family