Presentation on theme: "Caregivers of Advanced Cancer Patients: Geographic Proximity & Bereavement Adjustment John Cagle, PhD CPHAR Postdoctoral Fellow, UNC Institute on Aging."— Presentation transcript:
Caregivers of Advanced Cancer Patients: Geographic Proximity & Bereavement Adjustment John Cagle, PhD CPHAR Postdoctoral Fellow, UNC Institute on Aging Hartford 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
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 3 Co-Residing Caregivers GROUP 2 Proximate Caregivers GROUP 1 Long Distance Caregivers GROUP 3 Co-Residing Caregivers GROUP 2 Proximate Caregivers GROUP 1 Long Distance Caregivers QUESTIONNAIRE #1 Administered within one week of admission into hospice service QUESTIONNAIRE #2 Administered approximately 3 months after patient’s death Patient 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)
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, PhD John A. Hartford Foundation Virginia Commonwealth University Florida State University