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Comfort and Anguish The Complex Role of Religion in Coping with Illness. George Fitchett, DMin, PhD. Department of Religion, Health and Human Values george_fitchett@rush.edu. Objectives. - PowerPoint PPT Presentation
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1
Comfort and AnguishThe Complex Role of
Religion in Coping with Illness
George Fitchett, DMin, PhD
Department of Religion, Health and Human Values
george_fitchett@rush.edu
Objectives
Become aware of evidence about the beneficial effects of religious/spiritual coping with serious illness (eg. cancer).
Become aware of evidence about the harmful physical and emotional effects of religious/ spiritual struggle.
Learn how clinicians can utilize findings from this research to improve referrals to chaplains.
Comfort & Anguish
Definitions: Spirituality, Religion
Spirituality
“a search for the sacred”
Religion
“the larger social and institutional context in which the search for the sacred takes place”
Pargament, Desai & McConnell, 2006, p. 122
Risk of Mortality for More Frequent Worship Attenders
No association
6
“You know, I have a lot of faith. And that
keeps me going. I know that God is there walking with
me. Even during the bad
times I still feel blessed because it
could be worse.”
Comfort
N=230 patients with advanced cancer.From Balboni et al, J of Clinical Oncology, 2007
Very important
68%
Somewhat important
20%Not
important12%
Importance of Religion to Cancer Patients
10 Most Commonly Used CAM Therapies in Past 12 Months
1. Prayer specifically for your own health1. Prayer specifically for your own health 43.0%43.0%
2. Prayer by others for your health2. Prayer by others for your health 24.4%24.4%
3. Natural products3. Natural products 18.9%18.9%
4. Deep breathing exercises4. Deep breathing exercises 11.6%11.6%
5. Participation in prayer group for own 5. Participation in prayer group for own healthhealth
9.6%9.6%
6. Meditation6. Meditation 7.6%7.6%
7. Chiropractic care7. Chiropractic care 7.5%7.5%
8. Yoga8. Yoga 5.1%5.1%
9. Massage9. Massage 5.0%5.0%
10. Diet-based therapies10. Diet-based therapies 3.5%3.5%N=31,004 adults, 2002 NHIS. From: Barnes et al. 2004.
Spiritual Well-Being and Quality of Life in Cancer Patients
34%
8%
69%
37%
0%
20%
40%
60%
80%
No Pain High Pain
Per
cen
t w
ho
'en
joy
life
very
mu
ch'
Low Faith High Faith
From Brady, Peterman, Fitchett, Mo, Cella. Psycho-Oncology, 1999
Study Sample, Design Religion Measure Results
Brady, et al, 1999
n=1,610, diverse (medically, racially, SES) out-patients with cancer (83%) and HIV (17%)
FACIT-SpWB (SWB)
SWB has a positive effect (effect size = 0.5) on contentment with QoL, independent of pain, fatigue, physical, emotional, and social well-being
Cotton et al, 1999
n=142 women with breast cancer, avg time since dx, 14 mo, 84% white, 92% self-rated heath excellent, 65% no active religious practices.
Spiritual Beliefs Index (SBI), Principles of Living
SBI positively associated with QoL (p<.0.05) in models adjusted for demographics, health status, and psychological adjustment (Mini-MAC).
Daugherty et al, 2004
Convenience sample of n=162 patients in Phase I clinical trials.
FACIT-SpWB (SWB), Collaborative Religious Problem Solving
SWB positively associated with QoL (total and subscales, unadjusted models). Collaborative problem solving positively associated with SFWB, EWB.
Canada et al, 2005
n=129 women with Stage III/IV ovarian cancer
Spiritual Beliefs Index (SBI)
SBI scores were positively associated with active coping and QoL. Active coping mediated the association between SBI and QoL.
Dapueto et al, 2005
Convenience sample of n=309 cancer patients 4 hospitals in Montevideo; 80% with regional/metastatic disease, 57% income inadequate for needs, 42% no current religious affiliation.
FACIT-SpWB (SWB)
SWB associated with QoL in models adjusted for income, disease, treatment, TMDS.
R/S and Quality of Life in Cancer Patients
Religious/spiritual coping is very common.
Religious/spiritual coping takes different forms.
Positive religious/spiritual coping enhances emotional well being and quality of life.
Comfort
13
ANGUISH
A woman in her fifties with advanced cancer told a chaplain,
“Why? Why me? I just can’t figure it out.
And I get so depressed that I just want to give up on life altogether, you know?
And I’m so very angry at God. So angry. I refuse to speak to Him. You know what I mean?”
(Fitchett & Roberts, 2003)
Anger With God and Rehab Recovery
9.2 8.9
10.7
14.5
0123456789
1011121314151617
Anger (n=6) No anger (n=89)
So
ma
tic
Au
ton
om
y (
AD
L)
Admission
4 Mnth Follow-up
From: Fitchett, et al., Rehabilitation Psychology, 1999.
15
Negative Religious Coping (Brief RCOPE)
Pargament et al, 1998
not
at all some-
what quite
a bit a
great deal
8. I wondered whether God had
abandoned me. 0 1 2 3
9. I felt punished by God for my
lack of devotion. 0 1 2 3
10. I wondered what I did for God to
punish me. 0 1 2 3
11. I questioned God’s love for me. 0 1 2 3 12. I wondered whether my church
had abandoned me. 0 1 2 3
13. I decided the devil made this
happen. 0 1 2 3
14. I questioned the power of God. 0 1 2 3
16
Religious Struggle and Emotional Distress
Diabetic Outpatients
CHF Outpatients
Oncology Inpatients
psychological distress (PAID) .31*
depressed mood (CMDI) .35**
emotional symptoms (LHFQ) .30*
depression (POMS) .42*** .22*
anxiety (POMS) .32* .16
hostility (POMS) .29* .16
emotional well-being (FACT-G) -.23*
*p<.05, **p<.01, ***p<.001
Values are partial correlations, adjusted for age and gender.
From Fitchett et al, 2004
17
Sample (study)
Religious/spiritual struggle associated with
94 stem cell transplant pts, 3 mo f/u (Sherman et al., 2009)
Greater anxietyGreater depressionWorse emotional WB
300 breast cancer pts (stage I/II, IV), 12 mo f/u (Herbert et al., 2009)
Worse mental health (MCS)More depressive sx (CESD)Lower life satisfaction (SWLS)
202 CHF pts, 6 mo f/u (Park et al., 2008)
Poorer adherence to instructions re smoking and alcohol
101 end stage CHF pts, 3 mo f/u (Park et al., 2011)
More hospital daysPoorer physical functioning
Any Religious Struggle At
Group Baseline 2 Year
Follow-Up Number Percent Outcome at Follow-Up*
No Struggle No No 94 39% reference group
Transitory Struggle Yes No 40 17% ns
Acute Struggle No Yes 44 18% ns
Chronic Struggle
Yes Yes 61 26% > depression > functional limitations < quality of life
Two Year Change in Religious Struggle and Its Effects on Outcomes Among Elderly Medically Ill Patients
*Models adjusted for demographic factors and baseline values.
Source: Pargament et al, Journal of Health Psychology, 2004
ANGUISH
Religious Struggle as a Predictor of Mortality (30%, 176/596)
Adjusted RR = 1.06
95% CI = 1.01 - 1.11
model adjusted for:
positive religious coping, demographic factors, physical health, mental health
Pargament et al. 2001, Arch Intern Med
ANGUISH
20
Religious Struggle and Depression
neg cope recode 3 gps3+1-20
Mea
n o
f D
epre
ssio
n-D
ejec
tio
n (
PO
MS
)
7
6
5
4
3
Religious Struggle recoded into 3 groups
None (56%)
1-2 points (11%)
3+ points (33%)
N=100 oncology in-patients
Prevalence of Religious Struggle
None 7 items scored "not at all" 123 52%
Low
1 item scored "quite a bit" or "a great deal," or 1 or more items scored "somewhat" 80 34%
Moderate2 items scored "quite a bit" or "a great deal" 17 7%
High3 or more items scored "quite a bit" or "a great deal" 18 8%
238 patients with diabetes, cancer or congestive heart failure
Fitchett et al., 2004
Spiritual Struggle Item % Any
Wondered what I did for God/a Higher Power to punish me 44%
Felt punished by God/a Higher Power for my lack of devotion 41%
Questioned God’s/a Higher Power’s love for me 41%Decided the devil made this [asthma] happen 41%
Wondered whether God/a Higher Power had abandoned me 36%
Question the power of God/a Higher Power 32%Wondered whether my church had abandoned me 20% 0 items endorsed 26% 1-2 items endorsed 21% 3+ items endorsed 53%151 urban adolescents with asthmaCotton et al., 2011
Prevalence of Religious Struggle
Differences in RS by Patient Dx
1.8
2.7
2.1
0
1
2
3
4
5
diabetes (71) chf (70) oncology (97)
Differences in RS by Age
4.1
2.9
2.1 2.11.7
0.3
0
1
2
3
4
5
< 40 (18) 41-50 (32) 51-60 (58) 61-70 (68) 71-80 (53) 81-90 (9)
Trajectories of Religious Coping
*Differences in pre and post transplant mean scores were not significant.Average time between pre and post-transplant was 3.4 months (SD 2.9).N=94 myeloma patients who received autologous stem cell transplantSherman et al, J Behav Med, 2009
Pre-transplant Mean (SD)
Post-transplant
Mean (SD)*
Increase (%, Mean Change)
Decrease (%, Mean Change)
Positive Religious Coping 23.8 (7.9) 23.7 (7.6) 45% (4.9) 46% (4.9)
Negative Religious Coping 7.1 (1.7) 7.4 (2.9) 21% (3.3) 23% (2.0)
Isn’t religious struggle really just about Fundamentalist beliefs about God?
JewsAmong 234 Jews (60% Orthodox),
negative religious coping (JCOPE) was associated
with more worry, anxiety and depression
(Rosmarin et al 2009)
ANGUISH
Isn’t religious struggle really just about Fundamentalist beliefs about God?
Secular Europeans & Aussies• 53% of 202 UK women w breast cancer (Thune-Boyle et
al., 2011)
• 100 women w recent dx of gyne cancer religious struggle significantly associated with higher depressive symptoms (p<.001) and anxiety (p=.03) (models adjusted for demographic, disease and other religion variables; Boscaglia et al, 2005)
‘Atheists’Among 15 pts w adv cancer who report R/S not important to cancer experience, 6 (40%) reported 4 or more ‘religious concerns’ (Alcorn et al., 2012)
ANGUISH
Isn’t religious struggle really just depression?
The size of the correlations between religious struggle and depression in our study (r from 0.22 to 0.42) suggest religious struggle is associated with but cannot be reduced to depression.
Religious struggle predicts both poor recovery and mortality in models which adjust for depression.
ANGUISH
“I am told that God lives in me – and yet the reality of darkness and coldness and emptiness is so great that nothing touches my soul.” Newsweek 9/3/07
ANGUISH
Religious/spiritual struggle compromises emotional
adjustment to illness and quality of life
may compromise recovery
may increase risk of mortality
ANGUISH
Further Research on R/S Struggle
Descriptive• Conceptualization and measurement• Screening• Prevalence in specific populations• Correlates• Trajectory Spiritual Care• Intervention
What, if anything, helps people resolve R/S struggle?
3 Actions:
1. Refer for spiritual assessment re: possible RS struggle.
2. Spiritual care requested, make referral.
3. No action: no indication of RS struggle, no interest in spiritual care.
Fitchett & Risk, 2009
33
Results from Spiritual Struggle Screening Protocol
Fitchett and Risk, Journal of Pastoral Care and Counseling, 2009
Study Phase and Screener
Number (%) of New
Admissions Screened
Cases of Spiritual Struggle
Identified by Screening
Cases of Spiritual Struggle
Confirmed by Chaplain
Assessment
Phase I - PCTs 78 (49%) 4 4
Phase II - Medical Residents
10 (22%) 0
Phase III- Psychologists
85 (79%) 8 7
Total 173 (55%) 12/173 (7%) 11/12 (92%)
Prevalence of Religious Struggle
Cancer patients at SCCA and Dana Farber
ESRA-C (Electronic Self-Report Assessment-Cancer)
171/700 (24%) cases were positive for religious struggle
34
Group Number (%)
Belief Helpful 7 (50%)
Belief Not Helpful 3 (21%)
Belief in Past 1 (7%)
No Belief 3 (21%)14 oncology patients, Maine Medical Center
Maine Medical Center
Other Screening Tools
Are you at peace?N=248 patients with cancer, COPD, CHF, ESRD(Steinhauser et al., 2006)
Are you experiencing spiritual pain right now? “A pain deep in your being that is not physical” Yes = 61%N=57 patients with advanced cancer, prognosis < 6 months (Mako et al., 2006)
Three Implications for Chaplains
QUESTIONIMPLICATION FOR SPIRITUAL CARE
How did you decide which patients to see this week?
Good stewards of scarce resources
How did staff you work with determine who to refer and who not to refer?
Protocol for screening and referral
What evidence did you generate this week that your spiritual care made a difference in measurable patient outcomes?
Accountability and documentation
Comfort & Anguish
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