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

Catchment Area

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)

Response Rates

50% for the caregiver (pre-death) survey 80% for the bereavement (post-death)

survey

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

Thank You!

Dissertation Chair: Pam Kovacs, PhDJohn A. Hartford Foundation

Virginia Commonwealth University

Florida State University