Caregivers of Advanced Cancer Patients: Geographic Proximity & Bereavement Adjustment John Cagle,...
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Transcript of Caregivers of Advanced Cancer Patients: Geographic Proximity & Bereavement Adjustment John Cagle,...
Caregivers of Advanced Cancer Patients: Geographic Proximity &
Bereavement Adjustment
John Cagle, PhD
CPHAR Postdoctoral Fellow, UNC Institute on AgingHartford Doctoral Fellow
Overarching Aims
To better understand how cancer caregiving impacts bereavement adjustment
To better understand how cancer caregiver proximity affects caregiving and bereavement
Cancer Overview
1.4 million new cancer cases (ACS, 2008)
More than half a million cancer-related deaths (ACS, 2008)
2nd leading cause of death (CDC, 2008)
Hospice Care
Holistic and patient/family-centered care Interdisciplinary support Typically home-based Hospice Admission Criteria:
- Prognosis of 6 months or less
- Must forego curative treatments
Hospice: Current Trends
4,100 hospices in the United States (NHPCO, 2007)
Serve more than a million patients annually (NHPCO, 2007)
Patient population: 46% cancer 12% heart disease 9% dementia 7% lung disease
Informal vs. Formal Caregivers Networks of care:
Paid professionals Family members Friends Neighbors
Cancer Caregiving
Downside: Burden (Ferrario, 2004; Given et al., 2004)
Lower quality of life (McMillan et al., 2002)
Greater relationship strain (Kissane et al., 1994)
Decreased sense of mastery (Moody, Lowery & Tarandi cited in McMillan, 2005)
Diminished mental and physical health (Haley et al., 2001; Nijober et al., 2000)
Increased risk of mortality (Schulz & Beach,1999)
Cancer Caregiving
Upside Fulfilling a personal obligation and
reciprocity Ensuring adequate care for the loved one Time spent together Feelings of personal growth Sense of accomplishment Increased knowledge and preparedness Increased self-efficacy Strengthened relationships Increased empathy
Sources: Aranda & Milne, 2000; Brown & Stetz, 1999; Nijober et al., 1999; Salmon, 2005; Stein et al., 1997
Stress & Coping Models
Caregiver Stress & Bereavement Models Relief hypothesis Depletion hypothesis
Sources: Ferrario, 2005; Lazarus & Folkman, 1984; Schulz et al., 2001
Long Distance Caregivers
Between 5 million and 7 million in the US (MetLife, 2004; Wagner, 1997)
Projected to double over the next 15 years (NCOA, 2006)
Little known about the needs and experiences of this group
GROUP 3Co-Residing Caregivers
GROUP 2Proximate Caregivers
GROUP 1Long Distance
Caregivers
GROUP 3Co-Residing Caregivers
GROUP 2Proximate Caregivers
GROUP 1Long Distance
Caregivers
QUESTIONNAIRE #1Administered within one week of admission into
hospice service
QUESTIONNAIRE #2Administered
approximately 3 months after patient’s deathPatient Death
Study Design
Measures
Depression Anxiety Stress Scale - 21 WHO’s Well-Being Scale Herth Hope Index Lubben Social Network Scale (6 item
version) Texas Revised Inventory of Grief - Part 2 Quality of Dying - Hospice
Sample Characteristics
Caregiver Respondents (N = 106) Gender
Female - 68% (n = 69) Male - 32% (n = 33)
Race/Ethnicity* Caucasian - 80% (n = 82) African-American -10% (n = 10) Native-American - 6% (n = 6) Bi-racial/Multi-racial - 2% (n = 2)
*Highest frequencies are reported; totals may not add up to 100%
Sample Characteristics
Geographic Proximity Co-residing 50.9% (n = 54) Proximate 25.5% (n = 27) Long distance 23.6% (n = 25)
Relationship to Patient: “The patient is my…”*
Parent 33% (n = 32), Partner or spouse 31% (n = 30) Sibling14% (n = 14)
*Highest frequencies are reported; totals may not add up to 100%
Patient Demographics (N = 104) Age 76 years (SD = 14.3) Located at Home (n = 96, 92%) Moderate functioning and low levels of
pain Gender
Male - 53% Female - 47%
Length of Stay of 55 days (SD = 50)
Care and Geographic Proximity Hours of care provided (p < .001)
81 hours by co-residing (SD = 65) 26 hours by proximate (SD = 21) 41 hours by long distance (SD = 41)
Share of care, in retrospect (p < .001) Co-residing took on a greater share, followed
by proximate caregivers, and long distance caregivers.
Co-residing caregivers reported lower self-rated health (p = .038).
Proximity and Satisfaction
Long distance caregivers were less satisfied with: The availability of hospice (p = .004). Hospice care in general (p = .042).
Caregiving and Post-Death Depression Caregivers who assumed a greater share
of the care responsibilities reported higher levels of depressive symptoms during bereavement (ρ = .34, p = .041).
Positive correlation between on hours of care and depression scores post-death (r = .39, p = .020).
Hope and Bereavement
For combined caregiver groups, levels of hope and optimism were significantly (p = .042) lower after the death.
Quality of Dying
Quality of Dying had a positive relationship with length of stay in hospice (r = .53, p < .01)
Quality of Dying had a negative
relationship with emotional grief (r = -.55, p < .01)
Limitations
Non-representative sample Nested groups No controls for type of relationship to
patient Small sample size
Qualitative Data
Prompt: “Please use the space below to make any additional comments about how you could have been better prepared/supported during the care of your loved one.”
Qualitative Results
During Care (Pre-Death): Preparedness/Preparation Expressions of Gratitude Disappointment/Criticism of Care Role of Friends Needs Sacrifices Information and Education Faith and Spirituality Sense of Obligation/Giving Back
Qualitative Results
During Bereavement (Post-Death): Information and Education Faith and Spirituality Expressions of Gratitude Grief and Loss
What Now?
Supplemental data analysis of 30 additional post-death surveys
Further validation of the Quality of Dying – Hospice
Explore predictive factors that contribute to complicated bereavement