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Caregivers of Advanced Cancer Patients: Geographic Proximity & Bereavement Adjustment John Cagle, PhD CPHAR Postdoctoral Fellow, UNC Institute on Aging.

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Presentation on theme: "Caregivers of Advanced Cancer Patients: Geographic Proximity & Bereavement Adjustment John Cagle, PhD CPHAR Postdoctoral Fellow, UNC Institute on Aging."— Presentation transcript:

1 Caregivers of Advanced Cancer Patients: Geographic Proximity & Bereavement Adjustment John Cagle, PhD CPHAR Postdoctoral Fellow, UNC Institute on Aging Hartford 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 patients annually (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  Car egiver 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 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

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, PhD John A. Hartford Foundation Virginia Commonwealth University Florida State University


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