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Overarching Aims

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

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Overarching Aims

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  1. Caregivers of Advanced Cancer Patients: Geographic Proximity & Bereavement AdjustmentJohn Cagle, PhDCPHAR Postdoctoral Fellow, UNC Institute on AgingHartford Doctoral Fellow

  2. Overarching Aims • To better understand how cancer caregiving impacts bereavement adjustment • To better understand how cancer caregiver proximity affects caregiving and bereavement

  3. 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)

  4. 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

  5. Hospice: Current Trends • 4,100 hospices in the United States (NHPCO, 2007) • Serve more than a million patientsannually (NHPCO, 2007) • Patient population: • 46% cancer • 12% heart disease • 9% dementia • 7% lung disease

  6. Informal vs. Formal Caregivers • Networks of care: • Paid professionals • Family members • Friends • Neighbors

  7. 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)

  8. 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

  9. Stress & Coping Models • Caregiver Stress & Bereavement Models • Relief hypothesis • Depletion hypothesis Sources: Ferrario, 2005; Lazarus & Folkman, 1984; Schulz et al., 2001

  10. 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

  11. Study Design QUESTIONNAIRE #1 Administered within one week of admission into hospice service QUESTIONNAIRE #2 Administered approximately 3 months after patient’s death Patient Death GROUP 1 Long Distance Caregivers GROUP 1 Long Distance Caregivers GROUP 2 Proximate Caregivers GROUP 2 Proximate Caregivers GROUP 3 Co-Residing Caregivers GROUP 3 Co-Residing Caregivers

  12. Catchment Area

  13. 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

  14. 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%

  15. 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%

  16. 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)

  17. Response Rates • 50% for the caregiver (pre-death) survey • 80% for the bereavement (post-death) survey

  18. 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).

  19. Proximity and Satisfaction • Long distance caregivers were less satisfied with: • The availability of hospice (p = .004). • Hospice care in general (p = .042).

  20. 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).

  21. Hope and Bereavement • For combined caregiver groups, levels of hope and optimism were significantly (p = .042) lower after the death.

  22. 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)

  23. Limitations • Non-representative sample • Nested groups • No controls for type of relationship to patient • Small sample size

  24. 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.”

  25. 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

  26. Qualitative Results • During Bereavement (Post-Death): • Information and Education • Faith and Spirituality • Expressions of Gratitude • Grief and Loss

  27. 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

  28. Thank You!Dissertation Chair: Pam Kovacs, PhDJohn A. Hartford Foundation Virginia Commonwealth University Florida State University

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