Running Title: Religion and Caregiver Well-being
Table 2. Detailed Summary of Studies Examining the Relationships Between Religion/Spirituality and the Well-being of Informal Caregivers
Source (Abernethy et al., 2002) Caregiver Characteristics 156 cancer caregivers (96% White, 3% Black, 22% male), mean age: 64 Criteria for Caregiving Spouses of lung cancer patients diagnosed in the previous five years Design Cross-sectional sample recruited from surgical and oncology clinics in Rochester, NY Religion/spirituality Measure Religious Coping Index Outcome Measure Hamilton Depression Rating Scale Salient Findings Low and high levels of religious coping were associated with more depression. Moderate levels of religious coping was inversely associated with depression Religiosity was associated with more distress in wives only. “Ethnicity” was not associated with depression or physical symptoms
(Baider et al., 1998)
67 cancer caregivers (100% Jewish, 44% male), mean age 53 103 dementia caregivers (63% spouses, 37% children, 40% male), mean age 67
Spouses of recently diagnosed cancer patients Spouse or child who had the most responsibility and provided the most care for the patient
(Baumgarten et al., 1992)
1.5 year longitudinal sample recruited from an oncology clinic in Jerusalem Cross-sectional sample recruited from an outpatient geriatric assessment unit of a large teaching hospital in Montreal, Canada
Religiosity: not defined “Ethnicity”: Jewish (85%) vs. Other
Brief Symptom Inventory (BSI)
1. Center for Epidemiologic Studies Depression Scale (CES-D) 2.Aday & Anderson checklist of physical symptoms
1
Running Title: Religion and Caregiver Well-being
Citation (Baumgarten et al., 1994)
Caregiver Characteristics 86 dementia caregivers (65% spouses, 35% children, 40% male), mean age 67
Criteria for Caregiving Spouse or child who had the most responsibility and provided the most care for the patient
Design 1 year longitudinal sample recruited from an outpatient geriatric assessment unit of a large teaching hospital in Montreal, Canada Cross-sectional analysis from a longitudinal study of individuals recruited from the community
Religion/spirituality Measure “Ethnicity”: Jewish (83%) vs. Other
Outcome Measure 1. CES-D 2. Aday & Anderson checklist of physical symptoms
Salient Findings “Ethnicity” was not associated with depression or physical symptoms
(Brody et al., 1992)
492 caregiving daughters of community dwelling elderly (84% White, 48% married, 11% remarried, 18% separated/divorced, 11% widowed, 12% never married), mean age 51
Main provider of help with shopping, transportation, or emotional support
Denomination: 40% Protestant, 37% Catholic, 20% Jewish, 3% Other
1. CES-D 2. Mastery subscale of Pearlin and Schooler’s coping instrument 3. Bradburn Affect Balance Scale 4. Self rated health 5.Satisfaction with family and friends 6. Quality of relationship with care recipient. : .86 7. Caregiving burden, mastery and satisfaction
Religious denomination did not explain differences in outcomes between the married, remarried, separated/divorced, widowed, or never married daughters
2
Running Title: Religion and Caregiver Well-being
Citation (Burgener, 1994)
Caregiver Characteristics 84 dementia caregivers (98% White, 44% male), mean age 71
Criteria for Caregiving Primary (living with or providing primary care to an institutionalized patient) or secondary (providing assistance to the primary caregiver or support to the institutionalized patient) caregivers of persons with dementia.
Design Cross-sectional sample recruited from the Alzheimer’s Association and the local office of aging in northern New York
Religion/spirituality Measure 1. Church/Synagogue Attendance 2. Organized participation 3. Needs for church contact met 4. Spiritual needs meet
Outcome Measure 1. Well-being: Life-3 2. Role function, health perception, mental health and limitations in social activities subscales of the Medical Outcomes Study (MOS) SF20 3. Personal distress, domestic upset and negative feelings toward care recipient: Relative’s stress scale
Salient Findings Church/Synagogue attendance was associated with more domestic upset and better social functioning Having spiritual needs met was associated with less domestic upset and better well-being and mental health Other relationships were not statistically significant
3
Running Title: Religion and Caregiver Well-being
Citation (Burgener, 1999)
Caregiver Characteristics 271 dementia caregivers (93% White, 5% Black, 63% spouses, 33% children, 23% male), mean age 66
Criteria for Caregiving Person providing the majority of patient care
Design Cross-sectional sample recruited through advertisements, Alzheimer’s Association newsletters and support groups in Indiana and Illinois
(Chang et al., 1998)
127 caregivers of functionally disabled community dwelling adults (99% White, 55% children, 17% spouses, 31% male), mean age 62
Not defined
Cross-sectional representative sample of community residing elders in eastern Massachusetts
Religion/spirituality Measure 1. A religiosity scale measuring public religiousness and private religious behavior. : .77 for private and .87 for public 2. Whether spiritual needs were met 3. Satisfaction with clergy 4. Whether needs for church contact were met 5. Religious well-being: a subscale of the Spiritual Well-being Scale Items 2-4 were adapted from the Social Integration of the Aged in Churches scale One item from the Meaning in Caregiving Scale. “My religious or spiritual beliefs have helped me handle this whole experience.”
Outcome Measure 1. Well-being: Life3 2. Role function, health perception, mental health and limitations in social activities subscales of the Medical Outcomes Study (MOS) SF-20 3. Personal distress, domestic upset and negative feelings toward care recipient: Relative’s stress scale
Salient Findings Religious well-being was associated with better well-being, health perception and mental health. Private religious behavior was associated with more positive health perceptions Other relationships were not statistically significant
1. Relationship quality: 5-items from the positive affect measure of the Longitudinal Study of Three-Generation Families 2. CES-D 3. Role submersion: role captivity and loss of self
Religious/Spiritual coping was associated with better relationship quality. Relationship quality was inversely associated with depression and role submersion
4
Running Title: Religion and Caregiver Well-being
Citation (Cheng et al., 1994)
Caregiver Characteristics 28 female caregivers of terminally ill patients (82% White, 79% spouses, 11% children), mean age 63
Criteria for Caregiving Primary caregiver
Design Cross-sectional sample recruited from a Veteran’s Affairs hospital in Augusta, GA
Religion/spirituality Measure Religious Denomination: 79% Protestant, 4% Catholic, 14% Other, 4% no preference
(Clipp & George, 1990)
376 dementia caregivers (97% White, 30% male), mean age 59
Person who provided some level of care to a memory impaired patient Person principally responsible for providing or coordinating the resources required by the patient Spouses
1 year longitudinal sample recruited from the Duke University Family Support Program Cross-sectional sample recruited from a memory clinic in Dublin, Ireland
Church attendance: 4 point scale
(Coen et al., 2002)
72 dementia caregivers (50% spouses, 39% children, 29% male), mean age 58
(Cohen et al., 1994)
58 dementia caregivers (96% White, 36% male), mean age 69
Cross-sectional analysis from a longitudinal study recruited from an aging and dementia center in New York
Respondents were asking during semi-structured interviews to nominate 5 aspects of life they considered the most important determinants of quality of life. 21% of caregivers named religion Church/Synagogue attendance: weekly/biweekly, monthly, or less than monthly
Outcome Measure 1. Beck Depression Inventory (BDI) 2. Life Satisfaction Index 3. Burden Interview 4. Provision of Social Relations Scale Social support: instrumental support and perceived adequacy of support. : .88 Burden Interview
Salient Findings Religious denomination was not associated with caregiver depression, life satisfaction, burden, or social support
Church attendance was not associated with social support
Religion was not associated with burden
Hopkins symptom checklist (SCI90)
Church/Synagogue attendance was associated with more psychological distress
5
Running Title: Religion and Caregiver Well-being
Citation (Dyck et al., 1999)
Caregiver Characteristics 70 caregivers of schizophrenia patients (77% parents, 40% lived with patients, 17% male), mean age 52
Criteria for Caregiving Primary family caregiver
Design Cross-sectional sample recruited from a community mental health center in Spokane, Washington
Religion/spirituality Measure Religious Coping e.g. “prayed about it”
Outcome Measure 1. Health review: a checklist of specific illness symptoms 2. The family burden interview schedule
Salient Findings Religious coping was associated with improved physical health. This relationship disappeared in regression analysis. Religious coping was not associated with burden. Strength of religious faith was associated with higher satisfaction with general practitioners only. Religious faith and affiliation were otherwise not associated with satisfaction. Strength of religious faith was associated with higher satisfaction. Religious affiliation was not associated with satisfaction Ultimate meaning was not associated with depression or role strain.
(Fakhoury et al., 1996a)
1858 cancer caregivers (47% spouses), age: 41% <55 yr, 24% 55-64 yrs 22% 65-74 yrs 13% >75 yrs
Relatives, close friend, or neighbor of deceased cancer patients
Cross-sectional, study sample from the Regional Study of Care for the Dying (RSCD).
1. Religious affiliation: Christian vs. nonChristian 2. Strength of religious faith: strong, some, or none
Satisfaction with the care the patient received by nurses, general practitioners, and hospital physicians in the year prior to death
(Fakhoury et al., 1996b)
(Farran et al., 1997)
1858 cancer caregivers (47% spouses), age: 41% <55 yr, 24% 55-64 yrs 22% 65-74 yrs 13% >75 yrs 215 dementia caregivers (64% White, 36% Black, 36% male), mean age 72
Relatives, close friend, or neighbor of deceased cancer patients
Cross-sectional, study sample from the Regional Study of Care for the Dying (RSCD). Cross-sectional sample
1. Religious affiliation: Roman Catholic vs. other 2. Strength of religious faith: strong, some, or none
Satisfaction with the care the patient received from health and social services in the year prior to death 1. CES-D 2. Global Role Strain Scale
English speaking spouses who coreside with a dementia patient who is older than 60 years of age
The 5-item ultimate meaning (identification with a spiritual or religious belief system) subscale of the Finding Meaning through Caregiving Scale. : .91
6
Running Title: Religion and Caregiver Well-being
Citation (Flaskerud & Tabora, 1998)
Caregiver Characteristics 36 female HIV/AIDS caregivers (50% Latina, 28% White, 22% Black), mean age 46 117 female caregivers (36 AIDS, 40 dementia, 41 cancer, 61% White, 39% minority), mean age 56
(Flaskerud et al., 2000)
Criteria for Caregiving Low-income women who were providing informal home care to adults with HIV/AIDS Not defined
Design Cross-sectional sample recruited from HIV clinics in southern California
Religion/spirituality Measure Religious denomination: 56% Catholic, 28% Protestant, 16% no affiliation
Outcome Measure 1. CES-D 2. Global Health Assessment
Salient Findings Religious denomination was not associated with depression or physical health.
Cross-sectional sample recruited from outpatient HIV, dementia and oncology clinics in southern California
Religious denomination: 73% Christian, 9% Jewish, 18% none/other
(Flaskerud & Lee, 2001)
(Folkman et al., 1994)
76 female caregivers (36 HIV/AIDS, 40 dementia, 51% White, 22% Black, 26% Latina), mean age 59 244 male partners of AIDS patients (89% White, 5% Hispanic, 3% Black, 34% of caregivers were HIV+), mean age 38.
Not defined
Cross-sectional sample recruited from outpatient HIV and dementia clinics in southern California Cross-sectional sample recruited from San Francisco via media outlets, clinics/organizations and directed mailings
Religious denomination: 36% Catholic, 38% Protestant, 8% Jewish, 11% Other, 7% none Religious/spiritual beliefs and activities: : .88
1. CES-D 2. Symptom Checklist 90Revised (SCL-90-R) 3. Pittsburgh Sleep Quality Index (PSQI) 1. CES-D 2. Global Health Assessment Caregiver Dislocations Scale
Religious denomination was not associated with depression, anxiety, or sleep quality.
Religious denomination was not associated with depression or physical health. Religious/spiritual beliefs and activities were associated with less burden in HIV positive caregivers only
Partner living with an AIDS patient needing assistance with more than 2 activities of daily living
7
Running Title: Religion and Caregiver Well-being
Citation (Folkman, 1997)
Caregiver Characteristics 253 male partners of AIDS patients
Criteria for Caregiving Partner living with an AIDS patient needing assistance with more than 2 activities of daily living
Design 8 week longitudinal sample recruited from San Francisco via media outlets, clinics/organizations and directed mailings
Religion/spirituality Measure Religious/spiritual beliefs and activities: : .88
Outcome Measure 1. Bradburn Affect Balance Scale 2. 10 item positive reappraisal subscale of the Ways of Coping Scale
Salient Findings Religious/spiritual beliefs and activities were associated with more positive reappraisal, which in turn was associated with more positive affect. Religious/spiritual beliefs had no direct relationship with affect.
(George & Gwyther, 1986)
(Germino et al., 1998)
510 dementia caregivers (97% White, 54% spouses, 32% children, 88% married, 29% male), mean age 57 201 wives (66% White, 34% Black), mean age 60
Family member who provided some level of care to a memory impaired patient Wives of prostate cancer patients
Cross sectional sample recruited from a statewide technical assistance program for informal caregivers of Alzheimer’s patients Cross-sectional sample recruited from a tertiary care urology clinic or private practices in North Carolina
Church attendance: 4 point scale
Frequency and quality of social/recreational activity. : .79 Mishel Uncertainty in Illness Scale (MUID)
Church attendance was associated with less perceived need for social support.
God subscale (importance of God in one’s life) of the Health Locus of Control Scale
Importance of God was associated with more uncertainty in White caregivers only
8
Running Title: Religion and Caregiver Well-being
Citation (Haley et al., 1987)
Caregiver Characteristics 54 dementia caregivers (87% White, 13% Black, 28% spouses, 55% children, 74% married, 20% male), mean age 56.1
(Haley et al., 2003)
(Hinrichsen & Ramirez, 1992)
80 spousal caregivers of hospice patients with dementia or lung cancer (84% White, 21% male) 152 dementia caregivers (78% White, 22% Black, 36% spouses, 58% children, 29% male), mean age 61 for Whites and 53 for Blacks
Criteria for Caregiving Person with at least weekly responsibility for assisting a relative over age 60 with significant functional impairment who resided in the community Primary caregiver
Design Cross-sectional sample recruited from media outlets, referrals and service agencies
Religion/spirituality Measure Church attendance: Number of times attended church in the past month
Cross-sectional sample recruited from a nonprofit hospice in Tampa, Florida Cross-sectional sample recruited from New York area social service programs and medical, neurology and dementia clinics. The sample was representative of the larger U.S. caregiving population Cross-sectional sample recruited from two nursing homes in a large Eastern U.S. metropolitan center
Religious affiliation
Not defined.
Religious denomination: 46% Catholic, 32% Jewish, 12% Protestant, 10% other/none
Outcome Measure 1. BDI 2. Life Satisfaction Index 3. Self rated health problems: 4 point scale 1. CES-D 2. Life satisfaction index-Z (LSIZ) 1. Symptom Checklist 2. Zarit Burden Interview
Salient Findings Church attendance was associated with less depression, lower self rated health and greater life satisfaction Religious affiliation was not associated with depression or life satisfaction Religious denomination was not associated with psychiatric symptoms or burden
(Kammer, 1994)
89 caregivers of nursing home patients (5% spouses, 72% children, 35% male), mean age 58
Family member having responsibility for a patient newly admitted to a nursing home
Religion: Jewish vs. nonJewish
1. 8 subscales of the Ways of Coping Scale 2. Emotion Appraisal of Nursing Home Placement Tool (EANH) : .68-.83
Jewish caregivers were less likely to use distancing, self-controlling and positive reappraisal. Religion was not associated with stress appraisal
9
Running Title: Religion and Caregiver Well-being
Citation (Karlin, 2004)
Caregiver Characteristics 31 dementia caregivers (32% spouses, 65% children)
Criteria for Caregiving Not defined
Design Cross-sectional sample recruited from the Alzheimer’s associations of Colorado and western Nebraska, adult day-care centers, and from regional physicians or physician assistants. Cross-sectional sample recruited form service agencies in Alabama
Religion/spirituality Measure Organized and nonorganized religion.
Outcome Measure Zarit Burden Scale (ZBS)
Salient Findings Participation in organized and nonorganized religion was associated with less burden
(Kaufman et al., 1990)
57 parents of adults with mental retardation (65% White, 35% Black, 100% parents, 11% male), mean age 62
Self identified primary caregiver providing in home care to an adult child with mental retardation Person caring for a terminally ill relative receiving home hospice services
Frequency of church attendance
1. Burden: Cost of Care Index 2. Stress
Church attendance was not associated with burden Church attendance was associated with less stress Spiritual, religious and existential wellbeing were not associated with positive affect Existential wellbeing was associated with less negative affect
(Kirschling & Pittman, 1989)
70 caregivers of hospice patients (69% spouses, 26% children, 29% male), mean age 62
Cross-sectional sample referred from 5 hospice programs in 2 Northwestern states
Religious well-being, existential well-being and spiritual well-being
Bradburn Affect Balance Scale
10
Running Title: Religion and Caregiver Well-being
Citation (Kristjanson, 1989)
Caregiver Characteristics 210 caregivers of cancer patients (39% French, 28% British Isler, 20% Other European, 13% Other, 29% spouse, 46% children), age: 22% <30, 41% 31-50, 37% >50
Criteria for Caregiving Family member involved in or affected by patient’s illness
Design Cross-sectional sample recruited from an inpatient palliative care ward, outpatient oncology clinic and outpatient home care program in a tertiary hospital
Religion/spirituality Measure Religiosity: 41% Protestant, 37% Catholic, 16% other, 1% none
Outcome Measure Important healthcare provider behaviors. 74 items were important to patient care and 77 items were important to family care.
Salient Findings 1. Catholics were more likely to perceive that: “Spiritual support is available in hospital” 2. Those with religious affiliation were more likely to perceive as important 3 patient care behaviors: “Doctor is available to the patient”, “The patient knows it is ok to call for help at any time” and “There is no delay in making the diagnosis.” Religious denomination was not associated with care satisfaction, expectations, or perceptions.
(Kristjanson et al., 1997)
72 cancer caregivers (57% European/British, 18% French, 25% Other, 58% spouses, 33% male), age: 29% <50 yrs 33% 51-65 yrs 38% >65 yrs
Family member identified by the patient as the individual most involved in the patient’s illness
Cross-sectional sample recruited from inpatient medical units, palliative care units and home care programs in 3 Canadian provinces
Religious denomination: 33% Catholic, 51% Protestant, 15% Other
1. Family members care satisfaction scale (FAMCARE) 2. Family members care expectations (F-Care Expectation) Scale 3. Family members care perceptions (FCare Perceptions)
11
Running Title: Religion and Caregiver Well-being
Citation (Kulik, 2001)
Caregiver Characteristics 259 wives of community dwelling elderly, mean age 59
Criteria for Caregiving Spouse
Design Cross-sectional sample recruited from retreats, workshops and pensioners clubs. The sample was representative of the larger caregiving population in Israel
Religion/spirituality Measure Religiosity: orthodox, traditional, secular
(Leblanc et al., 2004)
200 dementia caregivers (89% Caucasian, 100% spouses, 28% male), mean age 73
Spouses who were the primary caregiver and cohabitated with the patient
Cross-sectional sample recruited via media advertising, outreach, community based providers, churches, and a university hospital
1. Self-perceived religiosity 2. Frequency of attendance at religious services 3. Frequency of prayer 4. Denomination: Protestant vs. other
Outcome Measure Satisfaction with Caregiving: 1. Commitment to caregiving 2. Perceived harmful effects of caregiving 3. Delegating responsibility for care : .65-.81 1. Hopkins symptoms checklist measure of depression 2. 5 measures of stress. : .77-.92
Salient Findings Religiosity was not associated with satisfaction with caregiving
Religiosity was associated with greater depression in caregivers with worse physical health. Religiosity was largely unrelated to stress. However, feelings of role overload were associated with greater self-perceived religiosity. Other measures of religion were not associated with depression or stress.
12
Running Title: Religion and Caregiver Well-being
Citation (Lee et al., 1997)
Caregiver Characteristics 54 dementia caregivers (15% spouses, 35% children, 89% married) 20% male), mean age 53
Criteria for Caregiving Family member with primary responsibility for care and supervision of the patient for at least 2 months during the patient’s progressive decline in mental health
Design Cross-sectional sample recruited from a nursing home and public health center in South Korea
Religion/spirituality Measure Practicing religion: Not specified
Outcome Measure Perceived Difficulties and Satisfaction Checklist
Salient Findings Practicing religion was positively associated with satisfaction in caregivers caring for their relative at home Practicing religion was not associated with satisfaction in caregivers who had admitted their relative to a nursing home Orthodoxy was associated with more support behaviors
(Litwin & Abramowitz, 1993)
(Litwin, 1994)
120 caregivers of hospitalized patients (87% children, 33% male, 78% married), age: 26% under 40, 68% 40-59, 6% older than 60 120 caregivers of hospitalized patients (87% children, 33% male, 78% married), age: 26% under 40, 68% 40-59, 6% older than 60
Filial relative who visited the patient in the hospital and was identified themselves as the primary caregiver Filial relative who visited the patient in the hospital and was identified themselves as the primary caregiver
Cross-sectional sample recruited from 2 hospitals in Jerusalem, Israel Cross-sectional sample recruited from 2 hospitals in Jerusalem, Israel
Degree of orthodoxy of the caregiver (secular to ultra orthodox): Bar-Lev Appraisal of Religious Affiliation
Informal support behavior provided by the caregiver
Degree of orthodoxy of the caregiver (secular to ultra orthodox): Bar-Lev Appraisal of Religious Affiliation
1. Scale of Filial Responsibility Expectations 2. Current support provided by the caregiver and future support perceived to be available to the caregiver
Orthodoxy was associated with more feelings of filial responsibility. Filial responsibility was, in turn, associated with more current and future support
13
Running Title: Religion and Caregiver Well-being
Citation (Llacer et al., 2002)
Caregiver Characteristics 194 caregivers of community dwelling elderly (34% spouses, 54% children), mean age 66
Criteria for Caregiving Person who most helps with six personal care activities
Design Cross-sectional sample recruited as part to the Aging in Leganes Study.
Religion/spirituality Measure Self reported religiosity: very, somewhat, or not at all
(Magliano, Fadden, Madianos et al., 1998)
236 caregivers of schizophrenia patients (75% parents, 16% spouses, 25% male), mean age 55
(Magliano, Fadden, Economou et al., 1998)
236 caregivers of schizophrenia patients (75% parents, 16% spouses, 25% male), mean age 55
Relative spending the highest number of hours in contact with the patient in during the last year Relative spending the highest number of hours in contact with the patient in during the last year
Cross-sectional sample recruited from community health centers in Italy, England, Germany, Greece and Portugal Cross-sectional sample recruited from community health centers in Italy, England, Germany, Greece and Portugal
Search for Spiritual Help subscale of the Family Coping Questionnaire
Outcome Measure 1. CES-D 2. Life satisfaction: 5 point scale 3. Aday & Anderson checklist of physical symptoms 4. Self perceived physical health: 5 point scale Family Problem Questionnaire
Salient Findings Self reported religiosity was associated with less depression in spouses only. Religiosity was not associated with life satisfaction or physical health
The search for spiritual help was associated with more subjective burden and was not associated with objective burden
Search for Spiritual Help subscale of the Family Coping Questionnaire
1. Social Network Questionnaire 2. Disability Assessment Questionnaire
(Magliano et al., 1999)
45 caregivers of schizophrenia patients (78% parents, 15% spouses, 28% male), mean age 53
Relative spending the highest number of hours in contact with the patient in during the last year
Cross-sectional sample recruited from psychiatric units in Naples, Italy and Aylesbury, United Kingdom
Search for Spiritual Help subscale of the Family Coping Questionnaire
Family Problem Questionnaire
The search for spiritual help was not associated with practical, emotional, or professional support received by the caregiver and was not associated with understanding by friends or with attitudes towards the patient The search for spiritual help was not associated with subjective or objective burden
14
Running Title: Religion and Caregiver Well-being
Citation (Magliano et al., 2000)
Caregiver Characteristics 159 caregivers of schizophrenia patients (93% parents, 15% spouses, 28% male), mean age 57
Criteria for Caregiving Relative spending the highest number of hours in contact with the patient in during the last year
Design 1 year longitudinal sample recruited from community health centers in Italy, England, Germany, Greece and Portugal Cross-sectional analysis from an 18 month longitudinal sample recruited from the San Francisco Bay area Cross-sectional random sample of disability service agencies that serve individuals with mental retardation
Religion/spirituality Measure Search for Spiritual Help subscale of the Family Coping Questionnaire
Outcome Measure Family Problem Questionnaire
Salient Findings The search for spiritual help was not associated with subjective or objective burden
(Mausbach et al., 2003)
(McDermott et al., 1997)
147 Caucasian and 110 Latina dementia caregivers (52% of Caucasians and 22% of Latinas were spouses, 100% female), mean age 61 in Caucasians and 52 in Latinas 95 parents of adults with mental retardation (65% married, 70% White, 30% Black, 22% male), mean age 61
Adult in caregiving role for at least 6 months who lived with and provided at least 4 hours of care to a family member Parents of individuals older than 21, with IQ <70, who have difficulty in 2 adaptive skill areas and who were diagnosed prior to age 21
Short form of the Brief Religious Coping Scale (BRCOPE)
Religion: 91% Protestant, 8% Catholic, 1% other
1. Overall physical health assessed with one question 2. short form of the Geriatric Depression Scale Caregiver burdens and gratifications
Religious coping was associated with worse overall physical health and was not associated with depression
Religious denomination was not associated with burdens and gratifications in caregivers of children living in the home or in children who had been placed out of the home
15
Running Title: Religion and Caregiver Well-being
Citation (Meller, 2001)
Caregiver Characteristics 49 dementia caregivers and 58 caregivers of hospitalized patients (35% spouses, 61% children, 33% male), mean age 58
Criteria for Caregiving Person who provided the most support for the patient
Design Crosssectional sample recruited from two hospitals in Israel
Religion/spirituality Measure 1. Religious Faith: 8 questions concerning belief in God, in supreme worldconduction power, in personal divine supervision, etc. : .89
Outcome Measure 1. Physical health 2. Mental health: Short Psychiatric Evaluation Schedule, b) Affect Balance Scale, 3. Life satisfaction 4. Financial resources : .85 5. Frequency of phone contacts with family/friends, b) visits with friends/family, c) frequency of synagogue attendance, d) frequency of club attendance, e) time spent relaxing, f) satisfaction with social activities
Salient Findings Religious faith was associated with fewer doctor’s visits and psychiatric symptoms and with higher life satisfaction, phone contact and synagogue attendance in children caregivers Religious faith was associated with worse self-rated health and with more psychiatric symptoms and synagogue attendance in spousal caregivers.
16
Running Title: Religion and Caregiver Well-being
Citation (Mickley et al., 1998)
Caregiver Characteristics 92 hospice caregivers (43% spouses, 37% parents, 30% Catholic, 50% Protestant, 20% Jewish/other, 22% male), mean age 57
Criteria for Caregiving Primary caregiver of a patient enrolled in home hospice
Design Crosssectional sample recruited from 4 hospices in the Midwest
Religion/spirituality Measure Religious Appraisals: 1) Successful (benevolent religious reframing, God’s will), 2) Partially successful (God’s punishment, loving but limited God, work of the devil), 3) Failure (apathetic God, unfair God)
Outcome Measure 1. CES-D 2. Beck Anxiety Inventory (BAI) 3. Purpose in Life Test 4. General Outcomes Scale: What individual learned form the event, how well they handled the event and their feelings and the extent to which they felt better about themselves.
Salient Findings Benevolent religious reframing was positively associated with better general outcome God’s will was associated with better general outcome and purpose in life Work of the devil was associated with better general outcome Apathetic God and Unfair God were associated with worse general outcome and less purpose in life and associated with more depression and anxiety
17
Running Title: Religion and Caregiver Well-being
Citation (Miltiades & Pruchno, 2002)
Caregiver Characteristics 142 mothers of adults with mental retardation (50% White, 50% Black, 51% married), mean age 64
Criteria for Caregiving Mother of adults with mental retardation (28% mild, 36% moderate, 36% severe)
Design Cross-sectional subsample recruited throughout the U.S.
Religion/spirituality Measure Religious Coping: How often during month the mother’s prayed for guidance, sought God’s help, prayed for strength, found comfort in religion, put their trust in God and prayed more than usual when dealing with problems with their child. Two questions asked whether the mother believed her religion helped her to accept her child’s disability and whether having a child with a developmental disability had brought the mother closer to God. : .91 Church Attendance: more than or less than once a month.
Outcome Measure 1. Caregiving satisfaction 2. Subjective burden 3. Quality of the motherchild relationship
Salient Findings Religious coping was associated with more caregiving satisfaction but had no association with burden or quality of the mother-child relationship.
(Moen et al., 1995)
53 women (100% White), age range 53-81
Person providing assistance to ill, handicapped, or older relatives
30 year longitudinal sample recruited from a midsized community in upstate New York
(Motenko, 1989)
50 spouses of dementia patients (100% White), mean age 70
Wife caring for husband at home
Cross-sectional sample recruited from support groups, newsletters, a memory disorder center and VA hospital in Boston
Religion: 52% Catholic, 34% Protestant and 14% Jewish
1. Mastery scale 2. Rosenberg’s self-esteem scale 3. Depression 4. General Life Satisfaction: : .69 5. Role conflict 1. Frustrations with caregiving 2. Gratifications with caregiving
Church attendance was associated with less depression and higher self esteem. Church attendance was not associated with mastery, life satisfaction, or role conflict Religious denomination was not associated with frustrations or gratifications with caregiving
18
Running Title: Religion and Caregiver Well-being
Citation (Ohaeri et al., 1999)
Caregiver Characteristics 106 caregivers of cancer and infertility patients (78% married), mean age 35
Criteria for Caregiving Relative directly involved in the informal caregiving role at home Relative who had been living for at least 6 months with a close family member with drug or alcohol problems
Design Cross-sectional sample recruited from a radiation oncology and a gynecology clinic in Nigeria Cross-sectional sample recruited from alcohol and drug treatment services, community agencies and public advertising
Religion/spirituality Measure Cancer Attributions: Belief in “God’s Will” and “Satan’s Work” as causative factors in cancer
Outcome Measure Caregiver burden
Salient Findings Cancer attributions were not associated with burden
(Orford et al., 2001)
200 (100 in England and 100 in Mexico) caregivers of persons with alcohol problems (43% spouse/partner, 40% parents, 31% male), age: in Mexico 49% are less than 40, in England 41% are less than 40
Religiosity: active vs. inactive. 29% active Roman Catholic, 9% active Protestant, 60% inactive, 1% missing
Engaged, tolerantinactive and withdrawal subscales of the Coping Questionnaire
Active religiosity was associated with more tolerant-inactive coping in Mexican caregivers only Religiosity was not associated with engaged or withdrawal coping
19
Running Title: Religion and Caregiver Well-being
Citation (Pargament et al., 1999)
Caregiver Characteristics 150 caregivers of persons undergoing coronary bypass surgery (87% White, 30% male), mean age 43
Criteria for Caregiving Family member of person undergoing coronary bypass surgery
Design Cross-sectional sample recruited from surgical waiting rooms
Religion/spirituality Measure 1. Religious Coping Activities Scale: Collaborative, Deferring, Self-directing and Pleading. 2. Church attendance 3. Frequency of prayer 4. Self-rated religiousness
Outcome Measure 1. Coping Outcomes Measure: What the individual learned from the event, how well they handled the event and their feelings and the extent to which they felt better about themselves. 2. Religious outcomes: assess perceived changes in individuals’ spiritual growth, closeness to God and closeness to the church 3. CES-D 4. Beck Anxiety Inventory Life Orientation Test
Salient Findings Collaborative religious coping was associated with better coping and religious outcomes. Collaborative, selfdirecting and pleading religious coping were associated with more depression and anxiety
(Park & Folkman, 1997)
105 male partners of HIV patients, mean age 38
Partner living with an AIDS patient needing assistance with more than 2 activities of daily living
Cross-sectional analysis from a 20 month longitudinal sample recruited from San Francisco via media outlets, clinics/organizations and directed mailings
1. Religious activities 2. Religious beliefs
Religious activities and beliefs were not associated with prebereavement optimism
20
Running Title: Religion and Caregiver Well-being
Citation (Picot, 1994)
Caregiver Characteristics 83 caregivers of dementia patients (100% African American, 13% spouses, 60% children), mean age 59
(Picot et al., 1997)
391 caregivers of community dwelling elderly with any type of illness or disability (10% spouse, 69% children/grandchildren, 65% White, 35% Black, 16% male), mean age 52 689 caregivers of community dwelling individuals (87% White, 2.5% Black, 42% parents, 18% spouses, 31% male), mean age 56
Criteria for Caregiving Person responsible for the majority of daily coordinating decisions or for delivering of physical, social or emotional care to a demented person older than 54 who was living in the community Individual who provided or coordinated care for the care recipient for a minimum of 5 hours weekly
Design Cross-sectional sample recruited from the news media and from a variety of agencies that serve the elderly population
Religion/spirituality Measure Religious preference: 83% Protestant, 2% Catholic, 15% other
Outcome Measure Picot Caregiver Rewards Scale
Salient Findings Religious preference was not associated with caregiver rewards
(Polen & Green, 2001)
Person providing ongoing assistance or care to another person because of that person’s health status
Cross-sectional sample generated from random digit dialing in a large metropolitan area in a Midwestern state Cross-sectional random sample of the Kaiser Permanente Northwest Region Health Maintenance Organization
Religiosity: 1) Organizational: frequency of attendance, 2) Nonorganizational: prayer, 3) Subjective: self assessed religiosity and comfort from religion Frequency of attending religious services: never, not very frequently, somewhat frequently, frequently, very frequently
Picot Caregiver Rewards Scale
1. Mental Health Index subscale of the SF-36 2. Role limitations due to Emotional Problems subscale of the SF-36 3. BSI-8 Depression Screen 4. Anxiety 5. Alcohol consumption
Black caregivers reported higher levels of rewards than White caregivers. Comfort from religion and prayer mediated this relationship. Frequency of religious attendance was associated with less alcohol consumption and was not associated with psychological wellbeing, role limitations, depression, or anxiety.
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Running Title: Religion and Caregiver Well-being
Citation (Quayhagen & Quayhagen, 1988)
Caregiver Characteristics 58 dementia caregivers (74% spouses, 26% children, 29% male), mean age 64
Criteria for Caregiving Person with responsibility for a family member with probable Alzheimer’s disease
Design Cross-sectional sample primarily recruited through support groups
Religion/spirituality Measure The existential growth subscale of the Coping Strategies Questionnaire. : .79
Outcome Measure Well-being. A composite scale consisting of the Life Satisfaction Index and perceived physical and emotional health 1. General Health Questionnaire: a screening item for emotional disorder 2. Affect Balance Scale
Salient Findings Existential growth was associated with greater wellbeing in wives only
(Rabins, Fitting, Eastham, & Fetting, 1990)
62 caregivers of dementia (n=32) and cancer patients (n=30) (77% spouses, 85% White, 31% male), mean age 61
Caregivers of dementia patients were the primary care providers. Caregivers for cancer patients were family members who lived with them
Cross-sectional sample recruited from a psychogeriatric clinic and oncology center in Baltimore, MD
1. Number of religious services attended 2. Religious faith: “The feeling that one is supported and comforted by one’s faith”
Religious attendance was not associated with emotional state Religious faith was associated with a more positive and less negative emotional state Strength of religious beliefs had a significant effect on the change in positive and negative affect balance scores over two years Religious beliefs were not associated with depression or burden
(Rabins, Fitting, Eastham, & Zabora, 1990)
50 caregivers of dementia (n=28) and cancer patients (n=22), (31% male) mean age 61
Caregivers of dementia patients were the primary care providers. Caregivers for cancer patients were family members who lived with them
2 year longitudinal sample recruited from a psychogeriatric clinic and oncology center in Baltimore, MD
Self reported strength of religious beliefs
Affect Balance Scale
(Rabkin et al., 2000)
31 spouses of amyotrophic lateral sclerosis patients (81% White, 10% Latino, 7% Asian, 39% male), mean age 53
Spouses
Cross-sectional sample recruited from an ALS clinic in New York City
Religious Beliefs Inventory
1. BDI 2. Zarit Caregiver Burden Scale
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Running Title: Religion and Caregiver Well-being
Citation (Rammohan et al., 2002)
Caregiver Characteristics 60 caregivers of schizophrenia patients (100% Hindu, 48% male), mean age 49
Criteria for Caregiving Individual who lived with the patient for greater than a year and was involved in the care of the patient
Design Cross-sectional sample recruited from a hospital in India
Religion/spirituality Measure 1. Strength of Religious Beliefs: measured with a single item on an 11 point scale 2. Religion/Faith subscale of the Coping Checklist
Outcome Measure Psychological well-being Questionnaire
Salient Findings Strength of religious beliefs was associated with greater psychological wellbeing Religion/Faith were not associated with psychological wellbeing
(Redinbaugh et al., 2003)
31 caregivers of home hospice patients with cancer (87% white, 13% African American, 71% spouses, 32% male), mean age 56 160 mothers of adults with mental retardation, mean age 69
Primary caregiver who resided in the patient’s home
(Rimmerman & Muraver, 2001)
Aging mothers of adult children with moderate retardation
Cross-sectional sample recruited from two nonprofit hospice organizations in southwestern Pennsylvania Cross-sectional sample recruited from sheltered employment programs in Israel
The Seeking Spiritual Support subscale of the Family Crisis Oriented Personal Scales (FCOPES)
1. BSI 2. Caregiver Burden Screen
Seeking spiritual support was not associated with caregiver strain
Religiosity: Orthodox (34%) vs. Traditional/Secular (66%)
1. Affect Balance Scale 2. Ludden Social Network Scale 3. Inventory of Small Life Events
Religiosity was not associated with well-being, social support, or undesirable daily life events
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Running Title: Religion and Caregiver Well-being
Citation (Robinson & Kaye, 1994)
Caregiver Characteristics 17 wives of dementia patients (100% White), mean age 65
Criteria for Caregiving Wife, older than 50, caring at home for a husband with early stage dementia
Design Cross-sectional sample recruited from the Alzheimer’s association, home health agencies and senior centers
Religion/spirituality Measure Spiritual Perspective Scale: a 10-item scale measuring participant’s perspective of the extent to which certain spiritual views are held and spiritually related interactions are utilized
Outcome Measure 1. CES-D 2. Social support
Salient Findings Spiritual perspective was not associated with depression or social support
(Roff et al., 2004)
275 African American and 343 Caucasian caregivers of individuals with Alzheimer’s dementia. (7% husbands and 20% wives in African Americans, 20% husbands and 41% wives in Caucasians), mean age 58 in African Americans and 65 in Caucasians
Adult in caregiving role for at least 6 months who lived with and provided at least 4 hours of care to a family member with impairment in at least 1 basic activity of daily living
Cross-sectional analysis from an 18 month longitudinal sample recruited from Birmingham, Alabama; Memphis, Tennessee; and Philadelphia, Pennsylvania
Summary scale of 3 items: 1. Importance of religion 2. Attendance at religious services or activities 3. Frequency of prayer or meditation : .80
Positive Aspects of Caregiving
Religiosity was associated with more positive aspects of caregiving. African Americans’ higher religiosity partially mediated the relationship between race and positive aspects of caregiving
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Running Title: Religion and Caregiver Well-being
Citation (Rudd et al., 1999)
Caregiver Characteristics 60 dementia caregivers (77% Australian, 18% Anglo other, 50% male) age: 7% 51-60, 25% 61-70, 47% 7180, 21% older than 80
Criteria for Caregiving Spouses
Design Cross-sectional sample recruited from nursing homes, respite centers, daycare centers, support groups and other organizations than provided services to caregivers of dementia patients Cross-sectional sample recruited from self help support groups in Israel Cross-sectional sample recruited from the Alzheimer’s Association support groups in Houston, TX
Religion/spirituality Measure Importance of Spirituality: 1) External spiritual support received, 2) Importance of external spiritual support and 3) Importance of support from internal spiritual resources
(Schwartz & Gidron, 2002)
(Shah et al., 2001)
93 parents of persons with schizophrenia or schizoaffective disorder (14% male), mean age 58 48 dementia caregivers (94% White, 27% male), mean age 65
Parent living with adult child with severe mental illness Self defined primary caregiver
Level of Religiosity: not defined
Outcome Measure 1. Cognitive Anxiety Scale 2. Hostility In Scale 3. Hostility Out Scale 4. Guilt Anxiety Scale 5. Affect Balance Scale Gratifications of Caregiving
Salient Findings Adjusting for the importance of spirituality had little effect on the relationships between caregiver gender, place of care (nursing home vs. home) and outcomes Religiosity was not associated with caregiving rewards
(Sherif et al., 2001)
60 caregivers of cancer (n=30) and hospitalized (n=30) patients
The most attendant caregiver
Cross-sectional sample recruited from a hospital in Saudi Arabia
1. Duke University Religion Index: 5-item scale measuring organizational, nonorganizational and intrinsic religiosity 2. Religious Coping Activities Scale: 29-item scale consisting of 6 subscales that measure the extent to which a person turns to religion, in both positive and negative ways, in response to stressful life circumstances Spiritual Well-being subscale of the Quality of Life Scale
1. Geriatric Depression Scale 2. Zarit Burden Interview
Religious discontent was associated with greater depression and burden.
Physical, Psychological and Social Wellbeing subscales of the Quality of Life Scale
Spiritual well-being was associated with greater overall, physical, psychological and social well-being.
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Running Title: Religion and Caregiver Well-being
Citation (Shibre et al., 2001)
Caregiver Characteristics 178 caregivers of patients with schizophrenia or major affective disorders 189 cancer caregivers (73% spouses, 11% children, 51% male), mean age 57
Criteria for Caregiving Close relative
Design Cross-sectional sample recruited from a health care center in Ethiopia Cross-sectional sample recruited from outpatient services in England
Religion/spirituality Measure Religion: Muslim vs. Christian
(Soothill et al., 2002)
Main carer
Religious Faith: “Do you have religious faith” yes/no
Outcome Measure Attributions and Stigma subscales of the Family Interview Schedule 48 Psychosocial Needs
Salient Findings Religion was not associated with attributions to supernatural forces or to stigma Religious faith was associated with an increased incidence of 4 nonspiritual needs: 1) support from neighbors, 2) help in dealing with unpredictability, 3) support from family, 4) help in finding a sense of purpose and meaning Religiosity was not associated with criticism, warmth, conflict, or critique
(Spruytte et al., 2002)
144 dementia caregivers (31% male), mean age 63
Partners, children, children in law
Cross-sectional random sample recruited from community services in Belgium
Religiosity: “Does the carer call himself/herself religious”: yes/no
(Stueve et al., 1997)
180 caregivers of patients with schizophrenia or major affective disorder (52% White, 24% Black, 24% Hispanic, 58% parents, 19% male), mean age 54
Person with the greatest contact and knowledge of the patient and who has at least monthly contact with the patient or one of the patient’s service providers
Cross-sectional sample recruited from a psychiatric inpatient unit or ambulatory service in New York
1. Religious involvement: Frequency of church attendance 2. Importance of religion in life
1. Perceived Criticism Scale 2. A 14-item scale that assess the degree of warmth, conflict and critique. : .82 Perceived Burden Scale. : .69-.80
Religious involvement and importance of religion in life were not associated with perceived burden.
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Running Title: Religion and Caregiver Well-being
Citation (Taylor et al., 1993)
Caregiver Characteristics 12 caregivers of cancer patients (74% married, 22% male), age 22% younger than 50, 36% age 5164 and 42% older than 65
Criteria for Caregiving Person who lived with patient and provided caregiving activities
Design 6 month longitudinal sample recruited from medical centers in a Northeastern urban city
Religion/spirituality Measure Church attendance: never (12%), occasionally (40%), or regular (48%) Religion: not defined
Outcome Measure Siegal Multidimensional Anger Inventory
Salient Findings Caregivers who attended church had significantly lower anger scores Religion was not associated with anger Spiritual perspective was not associated with physical health or depression Hindus experienced more stigma
(Teel et al., 2001)
83 caregivers of stroke patients (83% White, 61% spouses, 80% married, 29% male), mean age 57 159 caregivers of schizophrenia patients (Over 50% parents, 30% spouses, 52% male), mean age 50 257 female dementia caregivers (57% White, 43% Latina, 39% spouses), mean age 57
Family member or friend taking primary responsibility for managing the aftercare of the patient Person living with the patient who spent the maximum time and effort in caring for the patient Adult in caregiving role for at least 6 months who lived with and provided at least 4 hours of care to a family member suffering at least 2 instrumental activity of daily living or 1 activity of daily living impairment
5 month longitudinal sample recruited from hospitals in Kansas City, KA
Spiritual Perspective Scale: Scale reflects the importance of spiritual views in one’s life
1. Physical Health subscale of the Caregiver Reaction Assessment 2. CES-D Familial Interview Schedule: A scale that assesses the nature and degree of stigma experienced by the primary caregiver CES-D
(Thara & Srinivasan, 2000)
Cross-sectional sample recruited from an outpatient schizophrenia department in India
Religion: Hindu (87%), Christian (8%) and Muslim (5%)
(Thompson et al., 2002)
Cross-sectional analysis from an 18 month longitudinal sample recruited from six sites in the United States – Boston, Massachusetts; Birmingham, Alabama; Memphis, Tennessee; Miami, Florida; Philadelphia, Pennsylvania; and Palo Alto, California
The Spirituality subscale of the Older Persons Pleasant Events Schedule.
Spirituality was associated with less depression in Latina caregivers only
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Running Title: Religion and Caregiver Well-being
Citation (Tix & Frazier, 1998)
Caregiver Characteristics 123 caregivers of kidney transplant patients (66% spouses, 17% parents, 26% male), mean age 46
Criteria for Caregiving Person closest to the patient
Design 9 month longitudinal sample recruited from a university hospital in Minnesota
Religion/spirituality Measure 1. Religious Coping: overall degree to which individuals used religion to deal with transplant related stresses. : .92 2. Religious denomination: Protestant (47%), Catholic (36%)
Outcome Measure 1. Life Satisfaction 2. Depression, Anxiety and Hostility subscales of the Brief Symptom Inventory
Salient Findings Religious coping was associated with greater life satisfaction Religious coping was associated with more psychiatric distress in Catholics Catholics had a greater sense of competence
(VernooijDassen et al., 1997)
85 dementia caregivers (49% spouses, 37% children, 32% male), mean age 63 240 dementia caregivers
(Wright et al., 1985)
Family member, friend, or relative who takes personal responsibility for provision of care Not specified
10 month longitudinal sample recruited via general practitioners Cross sectional sample recruited from Alzheimer’s disease seminars and support groups throughout the Western states
Religion (Catholic or Protestant) vs. no religion
Sense of Competence : .79 1. Caregiver Burden Scale 2. Reframing coping strategy from the Family Coping Strategies instrument
The Seeking of Spiritual Support subscale of the Family Crisis Oriented Personal Evaluation Scales questionnaire
Seeking spiritual support was associated with less burden and more reframing coping
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Running Title: Religion and Caregiver Well-being
Citation (Yeh et al., 2002)
Caregiver Characteristics 77 caregivers of nursing home patients (52% children, 20% spouses, 49% male), mean age 51
Criteria for Caregiving Person with the primary responsibility to provide care to a person over 60 who needed help with 2 instrumental activity of daily living or 1 activity of daily living for greater than 4 weeks
Design 4 month longitudinal sample recruited from nursing homes and hospital in Taiwan
Religion/spirituality Measure Religious Preferences: Buddhist/Taoist (62%), Christian (24%), none (14%)
Outcome Measure Esteem, lack of family support, impact on finances, impact on schedule, impact on health Caregiver Reaction Assessment scale
Salient Findings Religious preference was not associated with burden, family support, caregiver esteem, impact on finances, or impact on schedule Religious preference was associated (the direction of the association not specified) with perceived health Religiosity was associated with more depression in child caregivers and less depression in spousal caregivers Religiosity was not associated with depression
(Zunzunegui et al., 1999)
194 caregivers of community dwelling elderly (34% spouses, 54% children, 18% male), mean age 66
Person who most helps with six personal care activities
Cross-sectional sample recruited as part to the Aging in Leganes Study.
Self reported religiosity: very, somewhat, or not at all
CES-D
(M.V. Zunzunegui et al., 2002)
119 caregivers of community dwelling elderly (14% male) ages: 29% <54, 31% 55-64, 19% 65-74, 21% >75
Person who most helps with six personal care activities
12 month longitudinal sample recruited as part to the Aging in Leganes Study.
Self reported religiosity: very, somewhat, or not at all
CES-D
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