J Cancer Surviv (2007) 1:193–204
DOI 10.1007/s11764-007-0029-7
Use of cancer support groups among Latina breast
cancer survivors
Anna M. Nápoles-Springer & Carmen Ortíz &
Helen O’Brien & Marynieves Díaz-Méndez &
Eliseo J. Pérez-Stable
Published online: 10 August 2007
# Springer Science + Business Media, LLC 2007
Abstract
Introduction Although Latina women diagnosed with breast
cancer may be at greater risk of psychosocial morbidity
compared to white women, few utilize support services such
as support groups. Reasons for this under-use among Latinas
are unknown.
Methods A cross-sectional telephone survey examined the
association of predisposing, enabling, and need factors with
use of cancer support groups among 330 Latina breast
cancer survivors recruited from a population-based tumor
registry in counties with Spanish language support groups.
Results Thirty-two percent had ever used a support group.
Among the 225 (68%) women who had never used one,
major reasons for not using a support group included
receiving enough support from other sources (20%), not
needing one (18%), and being unaware of groups in their
local area (17%). Women receiving quite a bit or a lot of
encouragement from family members to attend a cancer
support group were seven times more likely to have ever
A. M. Nápoles-Springer (*) : H. O’Brien :
M. Díaz-Méndez : E. J. Pérez-Stable
Medical Effectiveness Research Center for Diverse
Populations and the Center for Aging in Diverse Communities,
Division of General Internal Medicine, Department of Medicine,
University of California San Francisco,
3333 California Street, Suite 335,
San Francisco, CA 94118-1944, USA
e-mail: anna.napoles-springer@ucsf.edu
A. M. Nápoles-Springer : E. J. Pérez-Stable
UCSF Comprehensive Cancer Center,
San Francisco, CA, USA
C. Ortíz
Círculo de Vida Cancer Support and Resource Center,
San Francisco, CA, USA
attended one than women receiving little or no encourage-
ment (OR=7.04, 95% CI 3.72, 13.30). Spiritual well-being
was inversely associated with ever having attended a
support group (OR=0.93, 95% CI 0.89, 0.98).
Discussion Results suggest that families play an important
role in promoting use of support groups among Latina
breast cancer survivors, and that spirituality may offer an
alternative source of support.
Implications for Cancer Survivors More effort should be
directed toward providing culturally and linguistically ap-
propriate support services to breast cancer survivors, and
increasing awareness of these services among oncologists,
patients and family members.
Keywords Breast cancer . Latinas . Support groups .
Social support . Spirituality
Introduction
Breast cancer is the most frequently occurring cancer and the
leading cause of cancer death among Latinas [3, 47]. Over
two million people were living with breast cancer in the
United States in 2002, and of these, over 65,000 were
Latinas [53]. Projections indicate that by 2050, Latinos will
constitute 25% of the US population [62]. Thus, as the Latino
population continues to grow, so will the cohort of Latina
women living with breast cancer and its consequences.
Thirty to 45% of women with breast cancer experience
substantial psychological morbidity in the first 2 years of
survivorship [6, 11, 41, 42, 55], making psychosocial
support an important aspect of cancer care [37]. Limited
data are available on the prevalence of breast cancer
associated psychosocial morbidity among Latinas. Howev-
er, the few available studies indicate that Latinas may be at
194 J Cancer Surviv (2007) 1:193–204

increased risk of psychosocial sequelae of breast cancer
diagnosis and treatment due to unique socioeconomic, clinical,
and cultural factors. For example, Latina breast cancer
survivors experienced greater concerns over recurrence, pain,
death, complications of adjuvant therapy [58], body image,
sexual functioning, job disruptions, financial hardships, weight
gain, and being rejected by their husbands after treatment,
compared to White women [1]. Latinas also reported poorer
health related quality of life, mental health [6], quality of
relationship with their physician, and social support com-
pared to Whites, African Americans and Asians [2].
Limited English proficiency, part-time or no employ-
ment, limited insurance coverage, lack of transportation,
and unfamiliarity with the healthcare system place Latinas
at increased risk of distress [1]. Latinas also experience
limited access to culturally and linguistically appropriate
health care. Language differences may result in increased
anxiety among Spanish-speaking patients if they do not
fully understand their diagnosis or treatment and are less
involved in patient centered decision making [48]. Latinas,
especially those who are Spanish-speaking, may feel less
control over their breast health than White women [57].
While, Latinas may be more likely than White women to
perceive a strong support network at home, close family ties
may also increase emotional distress, especially if illness
interferes with family and household responsibilities [39].
Cancer support groups provide women with opportuni-
ties to share concerns with peers, obtain emotional support,
gain information about treatment and community resources,
and find guidance in navigating health care systems [13, 18,
29]. Randomized trials have demonstrated several benefits of
group psychosocial support among women with breast cancer
including improved psychological symptoms, decreased pain
[27, 28], use of more positive emotion regulation strategies
[26], less intrusive thoughts [34], better mood [20], and less
distress [12, 54]. However, support groups tend to be
utilized by White, educated, middle to upper class women
[5, 14, 28, 61], although this finding may be more reflective
of who enrolls in research studies on support groups, rather
than who actually uses them in the general population of
cancer patients [46].
There is reason to suspect that Latinas may experience
disparities in utilization of psychosocial support services,
such as support groups. Among Latinas, barriers to use of
support groups may include differences in language and
attitudes toward self-disclosure; lack of knowledge of support
groups, physician referral, childcare, and transportation; and
culturally ineffective outreach and support programs [4, 24,
56]. Limited availability of culturally appropriate psychoso-
cial services and lack of awareness appear to be key barriers
preventing ethnic minority and underserved women from
accessing psychosocial support services [4]. In some cases,
less use of formal support services among Latinas may be
appropriate if alternative sources of support are received and
preferred. For example, spirituality and social support may
be more important sources of support for Latinas than for
White women [21, 40].
This study was a community-based participatory research
project that aimed to identify correlates of use of formal
psychosocial support services among Latinas with breast
cancer. We sought to understand why some women elect to
use services and others do not. We felt that in order to study
the efficacy of support groups among Latinas, we first needed
to know more regarding knowledge and attitudes about
cancer support groups among Latinas. Our research was
guided by an established theoretical model of health care
utilization, the Behavioral Model for Vulnerable Populations
(BMVP), which was originally based on the Behavioral
Model of Access to Care [23, 43]. According to the BMVP
model, predisposing factors (e.g., demographics, health
beliefs), enabling factors (e.g., perceived barriers to care,
social support) and need factors (e.g., health status), predict
health behaviors and outcomes. Figure 1 depicts our concep-
tual model of factors associated with the use of support
groups among Latina women with breast cancer.
The aim of this study was to identify predisposing,
enabling, and need factors associated with participation in
cancer support groups in a population-based cross-sectional

Figure 1 Framework of corre-

Predisposing Factors
lates of use of support groups.
• Age
• Marital status
• Employment
• Education
• Language
• Perceived benefits
Enabling Factors
• Health insurance
• Lack of perceived
barriers
• Social support
• Encouragement to
attend support groups
Need Factors
• Health status
-Self-rated health
-Physical limitations
-Years since diagnosis
-Breast cancer treatment
• Knowledge of breast
cancer diagnosis
• Spiritual well-being

Use of Cancer
Support Group
J Cancer Surviv (2007) 1:193–204
survey of Latina breast cancer survivors. We hypothesized
that perceived benefits of groups, encouragement by oncol-
ogists and family members to attend, and knowledge of their
breast cancer diagnosis would be positively associated with
ever attending a support group. We also hypothesized that
perceived barriers to attending a group, spiritual well-being,
and social support from family and oncologists would be
negatively associated with ever attending a support group.
Social support from family members and oncologists, and
spiritual well-being were hypothesized to be negatively
associated since we believed that women who felt they were
receiving adequate support from these sources would
perceive no need for a support group [46].
Methods
Sample The study population consisted of Latinas diag-
nosed with primary breast cancer between 1999–2002 who
were alive and resided in four Northern California counties
where Spanish-language support groups existed at the time
of the survey. Women with breast cancer were identified
through a population-based cancer registry belonging to the
National Cancer Institute Surveillance, Epidemiology, and
End Results (SEER) Program [30]. Selecting counties with
Spanish-language cancer support services allowed us to
assess Latinas’ perceptions of barriers to services in regions
where language and cost barriers were minimized. Inclusion
criteria consisted of women of any age and national origin
who: (1) self-identified as Latina; (2) were diagnosed with
their first in situ or invasive breast cancer between 1999–
2002 (within 5 years of the survey, which was conducted
between April–October, 2004); and (3) resided in Alameda,
Contra Costa, Santa Clara, or Santa Cruz county. Exclusion
criteria included having metastatic breast cancer (per the
registry), being too sick to participate, and cognitive
impairment compromising the quality of the interview as
judged by the interviewer.
Measures In a cross-sectional telephone survey, women
were asked about sociodemographic, health status, and
psychosocial factors associated with participation in cancer
support groups. For descriptive purposes, women who
reported limited English proficiency (LEP) were also asked
three items regarding language assistance and their cancer
care. Two items asked, “how often did you visit a doctor
who speaks Spanish well?” and “How often did doctors use
an interpreter?” with response options of 1=never because
one was not available, 2=rarely, 3=sometimes, 4=usually,
5=always, 6=never because I speak enough English. The
third item asked “When you had an interpreter, who usually
did the interpreting?” with response options of family
195
member or friend, hospital or doctor’s office employee
(such as, nurse or clerk), professional interpreter, or other.
Predisposing factors: sociodemographic variables
Sociodemographic variables included age in years, marital
status (1=single/widowed/divorced, 2=married or living with
partner), employment status (1=employed, 2=unemployed),
educational level (1=zero to sixth grade, 2=seventh grade to
high school graduate, 3=more than high school), and
language of the interview (English or Spanish as determined
by the respondent’s preference). Latino ethnicity was
confirmed by self-report based on an item that asked, “Which
of the following ethnic groups best describes you: African
American or Black; Latina, Hispanic or Latin American;
Native American or American Indian; Asian or Pacific
Islander; or Multi-ethnic?”
Predisposing factors: perceived benefits of support groups
New items were developed to assess perceived benefits of
support groups. These items were based on the literature
[25, 51, 59] and input from the community research
partners, a Latina psychologist experienced in cancer
psychosocial support services, and her staff, which included
Latina breast cancer survivors.
For the Perceived Benefits of Support Groups Scale, 16
items were created that asked how helpful support groups
were in performing various support functions, such as
providing cancer information and survivor role models,
easing distress, and improving coping with cancer and
patient participation in medical care. A sample item is:
“How helpful or not do you feel that support groups are at
helping women learn better ways to cope with cancer?”
Response options for the benefits items were 1=not helpful,
2=a little helpful, 3=quite helpful, and 4=very helpful.
Enabling factors: perceived barriers to use
of support groups
New items were developed to assess perceived barriers to
use of support groups. These items were also based on the
literature [16, 19, 46] and input from the community
research partners. For the Perceived Barriers to Use of
Support Groups Scale, we created 15 items that asked
respondents to rate the importance of various factors in
explaining why some Latinas with cancer do not attend
support groups. These factors included physical limitations,
feeling that it would remind them of their cancer,
transportation and child care difficulties, family and work
obligations, feeling too sick, and attitudes about self-
disclosure. The introduction to the items and a sample item
196
follow: “In your opinion, how important are the following
reasons in explaining why Latinas with cancer do not attend
support groups? In general, Latinas with cancer do not go
to support groups because they are too busy with family
obligations.” Response options were: “Is that... 1=not at all
important, 2=somewhat important, 3=important, and 4=
very important.”
Enabling factors: social support from family or friends
and oncologist
We used Helgeson’s Measures of Perceived Availability of
Social Support previously used in a sample of 312 women
diagnosed with stage I or II breast cancer, and treated with
surgery and adjuvant chemotherapy [35]. Helgeson’s
measures consist of two scales, each with subscales, one
assessing support from the woman’s spouse or partner, and
the other assessing support from the woman’s oncologist.
The spousal support scale has three subscales assessing
emotional, informational, and instrumental support (five
items each). The oncologist scale has two subscales
assessing emotional and informational support (five items
each); instrumental support was not included by Helgeson
et al., due to its lack of relevance in the case of the
oncologist. In Helgeson’s study, the Cronbach’s alpha
coefficients for the subscales of Perceived Availability of
Social Support from spouse and oncologist measures
ranged from 0.70 to 0.89 [35].
For our study, we adapted slightly Helgeson’s spousal
support scale by asking women to report the degree of
support received from “family and friends” rather than
“spouse or partner.” We changed the referent of the items
because we anticipated the importance of family support
among Latinas, and could not ask individually about family,
friends, and spouses or partners due to respondent burden.
The oncologist scale was used as developed by Helgeson et
al., and the referent was the “oncologist or cancer doctor.” All
of the social support measures were worded similarly. Items
asked how likely family and friends (or their oncologist)
would be to provide various types of help for their cancer if
they needed it (e.g., “How likely would they be to comfort
you if you were upset?”). Response options were 1=they
would not do this, 2=they might do this, 3=they would
probably do this, and 4=they would definitely do this.
Enabling factors: encouragement from family
and oncologist to attend a support group
Two single item measures asked how much encouragement
to attend a support group respondents received. One asked
in reference to their family and the other about their
oncologist. A sample item is: “How much encouragement
to attend a support group have you received from your
J Cancer Surviv (2007) 1:193–204
family?” Response options were 1=none, 2=a little, 3=
quite a bit, and 4=a lot.
Need factors: health status
Health status measures included self-rated health, presence
of physical limitations, years since breast cancer diagnosis,
and breast cancer treatments received. Self-rated health was
assessed with a single item that asked “In general, would you
say your health is poor, fair, good, very good, or excellent?”
Physical limitations were assessed using a single item
previously found to predict health-related quality of life
among ethnically diverse cancer patients [64], originally
developed by the Eastern Cooperative Oncology Group.
Respondents indicate their current level of activity with a
four-level response option ranging from 1=able to do all
normal activities to 4=bedridden for more than half of the
day. This variable was dichotomized into no limitations vs
some limitations as over three-fourths of the sample reported
an ability to do all of their normal activities. Years since
diagnosis was assessed with an item asking “How many
years has it been since you were first diagnosed with breast
cancer?” with response options of <1 year, 1–2 years, 3–
4 years, or 5 or more. Women were also asked if they had a
mastectomy, a lumpectomy, radiation therapy, chemotherapy,
and hormone therapy, with response options of yes or no to
each of the five items. A type of surgery variable (mastec-
tomy vs lumpectomy) was created from the mastectomy and
lumpectomy items such that anyone who answered “yes” to
the mastectomy item was categorized as mastectomy (even if
they also answered “yes” to the lumpectomy item) and
women who answered “yes” to the lumpectomy item and
“no” to the mastectomy item were categorized as having had
a lumpectomy.
Need factors: knowledge of personal diagnosis
To assess knowledge of their personal breast cancer
diagnosis, respondents were asked their stage at diagnosis,
number of affected lymph nodes, tumor’s estrogen receptor
positive or negative status, and histological grade. Based on
these four items, an index measure of their breast cancer
diagnosis knowledge was calculated as the sum of the
number of items they were able to answer (rather than
“don’t know”).
Need factors: spiritual well-being
Spiritual well-being was assessed using a previously
validated and translated (into Spanish) 12-item scale from
the Functional Assessment of Chronic Illness Therapy
measurement system (FACIT-Sp, version 4). [50] This 12-
item scale asks respondents about their sense of meaning
J Cancer Surviv (2007) 1:193–204
and purpose, and sense of strength and comfort derived
from their faith. A sample item is: “Please indicate how true
each statement has been for you during the past 7 days... I
find comfort in my faith or spiritual beliefs.” Response
options were 0=not at all, 1=a little bit, 2=somewhat, 3=
quite a bit, and 4=very much. The scale is scored as the
sum of non-missing items after reversal of two items,
prorated for the number of items answered by the
respondent (multiply sum by 12 and then divide by number
of items answered per instructions from the authors). In a
previous sample of 1,610 cancer and HIV patients, 45% of
which were Latino (92% of Latinos were administered the
scale in Spanish), the Spiritual Well-being scale demon-
strated a Cronbach’s alpha of 0.82 [7].
Outcome variable
The outcome variable of attendance was assessed by
asking, “Have you ever attended a support group for people
with cancer?” with a response option of yes or no.
Procedures All survey items that were not available in
Spanish were rigorously translated using forward and
backward translation methods with team review and
reconciliation of any discrepancies [8, 9, 32, 63, 66].
The translation team consisted of four bilingual research-
ers (including two physicians) of Mexican, Cuban and
Puerto Rican descent, all with extensive survey translation
experience. For the new instruments that were developed
specifically for this study (Perceived Benefits and Per-
ceived Barriers Scales), the decentering method was
applied if the translated item was not semantically
equivalent to the original wording; that is, the original
English version was modified to be equivalent to the
Spanish translation [44, 67]. New and newly translated
survey items were pre-tested in both Spanish and English,
using cognitive interviews, and modified as necessary
[63].
Prior to the survey, a letter was sent to eligible women’s
physician of record, and telephone follow-up sought
consent to contact their patients. Women whose physicians
did not object to our contacting the patient received an
initial contact letter in English and Spanish with an
acceptance–refusal postcard where patients could indicate
they preferred no further contact. Patients who did not
return a refusal postcard were telephoned by an experienced
bilingual–bicultural interviewer who answered questions
and obtained verbal consent prior to administering the
telephone survey. The survey was conducted in the
language preferred by the respondent. Participants received
$20.00 in appreciation. The University of California San
Francisco institutional review board approved the study
procedures.
197
Analyses Using multi-trait methods, we conducted psycho-
metric analyses of the multi-item scales assessing benefits
of support groups, barriers to attending support groups,
perceived availability of social support from family/friends
and oncologists, and spiritual well-being. These analyses
were conducted by language of the interview and for the
total sample. Multi-trait scaling analysis provides evidence
of divergent and convergent validity, and internal consis-
tency reliability [33]. We conducted multi-trait scaling
analysis since psychometric data on these scales in Latino
samples was not available, except for limited data on the
FACIT Spiritual Well-being scale.
Chi-square and unpaired Student t tests identified group
differences on predisposing, enabling, and need variables
between women who had and had not used support
groups. Multivariate logistic regression models assessed
the independent effects of predictor variables that were
associated with the outcome at p < 0.15 in bivariate
analyses and controlled for breast cancer treatment.
Initially, interaction terms assessed whether respondents’
preferred language for the interview moderated the effects
of the other variables on the likelihood of ever attending.
The interaction terms were dropped in the final models
since none were significant. There were no significant
differences by national origin subgroup (Mexican origin
vs other Latino origin) on predictor or outcome variables
in bivariate or multivariate analyses; thus this variable was
not included.
Results
Psychometric analyses
Results of the multi-trait analyses are presented in Table 1.
The unidimensionality of the Perceived Benefits scale was
supported. The Perceived Benefits scale demonstrated
adequate psychometric properties in this sample with good
convergent validity, i.e., the item-scale correlations were all
>0.30 (correlations between each of the items and the scale
score), which is considered adequate for newly developed
scales [65], and good divergent validity (all items were
more highly correlated with their own hypothesized scale
score than with the other scale scores). Internal consistency
reliability assessed by Cronbach’s alpha was 0.94 in the
total sample, 0.95 for the English version, and 0.92 for the
Spanish version. Thus, we scored this scale as the mean of
the non-missing items.
The unidimensionality of the Perceived Barriers to Use
of Support Groups scale was not supported by the multi-
trait analyses as several of the item-scale correlations were
<0.30, and correlations appeared to cluster based on item
198 J Cancer Surviv (2007) 1:193–204

content. Based on the face validity of the items and results
of further multi-trait analyses, we dropped 7 of the items
that failed to meet criteria for convergent and divergent
(construct) validity. The remaining items formed four
subscales assessing barriers (two items each) that demon-
strated adequate psychometric properties in each language
and in the total sample. The Perceived Barriers subscales
and their Cronbach’s alphas in the total sample were:
Reminder of Cancer, α=0.89 (do not like participating
because it reminds them they have cancer and makes them
think more about their cancer than they like); Logistical
Barriers, α=0.67 (lack of transportation and childcare);
Obligations, α=0.85 (too busy with work and family
obligations); Avoid Self-disclosure, α=0.91 (not comfort-
able sharing feelings in a group or talking to others about
cancer). Thus, each of the Perceived Barriers subscales was
scored as the mean of the non-missing items.
The construct validity and internal consistency were
adequate for all of the hypothesized subscales of the Perceived
Availability of Social Support measures for both sources of
support, family and friends and oncologists. The social support
subscales and their Cronbach’s alphas in the total sample were:
Emotional Support from Family and Friends, α=0.85;
Informational Support from Family and Friends, α=0.87;
Instrumental Support from Family and Friends, α=0.85;
Emotional Support from Oncologist, α=0.93; and Informa-
tional Support from Oncologist, α=0.91. Thus, these
subscales were scored as the mean of non-missing items for
each subscale.
Finally, the Spiritual well-being scale also demonstrated
adequate construct validity and internal consistency reli-
ability in this sample as can be seen in Table 1.
Descriptive analyses
The sampling frame consisted of 1,133 eligible women
according to tumor registry data. Of these, we were unable
to contact 29% (n=333) due to incorrect information or
having moved, 22% (n=249) was ineligible mostly based
on misclassification of ethnicity, 14% (n=161) declined,
and 6% (n=60) was deceased or too ill. We obtained a 67%
response rate of those who were eligible, not too ill, and
accessible (330/491) or 29% of the sampling frame. The
telephone survey took an average of 32 minutes. Compared
to non-participants, participants in the study tended to be
younger at the time of the interview (mean age 58.8 vs
61.4 years, p<0.001) and at diagnosis (55.8 vs 58.2 years,
p<0.001), and less likely to have well differentiated tumors
based on registry data (14.1 vs 18.5%, p<0.05). Registry
data indicated no significant differences between participants
and non-participants in county of residence or stage at
diagnosis using the SEER Summary Staging System [68].
The mean age of the sample was 58 years (range=30–
90 years; SD=11.9 years); 25% was less than age 50
(Table 2). Approximately 70% of the sample was of
Mexican origin, 14% was Central American, and 7% was
South American. Sixty percent was foreign-born. Two
thirds of the sample had a high school education or less.
Nearly all were insured, with two-thirds privately insured
and almost one-third publicly insured. The majority of the
sample was unemployed, rated their health as good or
excellent, and was married or living with someone. Based
on registry data, [68] the stage at diagnosis of respondents
was 18% (n=59) in situ, 49% (n=162) localized, 31% (n=
103) regional, 0% distant, and 2% (n=6) unknown.

Table 1 Item–scale correlations, reliability and means (standard deviations) for scales

Scale (possible range) Number of Items Item–scale correlations Total sample English Spanish
(N=292–330) (n=111–124) (n=181–206)

α Mean (SD) α Mean (SD) α Mean (SD)

Perceived benefits (0–4) 16 0.49–0.79 0.94 3.72 (0.43) 0.95 3.67 (0.48) 0.92 3.76 (0.39)
Perceived Barriers
Reminder of cancer (0–4) 2 0.81 0.89 3.03 (1.14) 0.89 3.02 (1.14) 0.89 3.03 (1.14)
Logistical barriers (0–4) 2 0.41 0.67 3.20 (1.00) 0.65 3.29 (0.94) 0.68 3.15 (1.03)
Obligations (0–4) 2 0.73 0.85 3.02 (1.06) 0.81 3.26 (0.90) 0.86 2.87 (1.12)
Avoid self-disclosure (0–4) 2 0.79 0.91 3.29 (1.00) 0.93 3.43 (0.94) 0.90 3.21 (1.03)
Social support from family
Emotional (0–4) 5 0.54–0.69 0.85 3.68 (0.57) 0.80 3.78 (0.43) 0.87 3.62 (0.64)
Informational (0–4) 5 0.56–0.73 0.87 3.34 (0.81) 0.90 3.52 (0.75) 0.85 3.24 (0.83)
Instrumental (0–4) 5 0.48–0.70 0.85 3.69 (0.60) 0.84 3.76 (0.51) 0.86 3.64 (0.65)
Social support from oncologist
Emotional (0–4) 5 0.68–0.79 0.93 3.34 (0.84) 0.92 3.38 (0.80) 0.94 3.31 (0.87)
Informational (0–4) 5 0.72–0.85 0.91 3.58 (0.71) 0.85 3.68 (0.56) 0.93 3.51 (0.78)
Spiritual well-being (0–48) 12 0.32–0.75 0.82 40.82 (7.02) 0.80 41.41 (6.84) 0.83 40.46 (7.12)
J Cancer Surviv (2007) 1:193–204 199

Table 2 Characteristics of Latina breast cancer survivors in four Table 2 (continued)

northern California counties, 2004 (N=330)
Characteristics N (%)
Characteristics N (%)
Lumpectomy 126 (40.4)
Age (years) Radiation therapy 221 (67.0)
30–49 83 (25.3) Chemotherapy 194 (58.8)
50–59 102 (31.1) Hormone therapy 207 (62.7)
60–69 79 (24.1) Years since diagnosis
70–90 64 (19.5) <1 year 5 (1.5)
Birthplace 1–2 years 127 (38.6)
US-born 134 (40.7) 3–4 years 156 (47.4)
Foreign-born 195 (59.3) 5 years 41 (12.5)
National origin
Mexico 226 (68.5)
Central America 46 (13.9)
South America 22 (6.7)
Other Latino 36 (10.9)
Marital status
Single/widowed/divorced 132 (40.1) Almost 40% of the sample was limited English profi-
Married/living with someone 197 (59.9) cient (LEP), that is, they reported speaking English “not at
Employment status all,” “poorly,” or “fairly well” (vs “well” or “very well”).
Work part-time or full-time 130 (39.5) Regarding their cancer care, 63% of LEP women reported
Homemaker/unemployed/retired/disabled 199 (60.5)
never seeing a cancer care physician who spoke Spanish
Education
None–sixth grade 86 (27.1)
well. Twenty-four percent of LEP women never or rarely
Seventh grade–high school graduate/GED 134 (42.3) used an interpreter during their cancer-related visits because
More than high school 97 (30.6) one was not available. When they did use an interpreter,
Language of interview 43% used a family member or friend, 26% used office staff,
English 124 (37.6) and 18% used a professional interpreter.
Spanish 206 (62.4) Knowledge of personal diagnostic indicators for their
Insurance status breast cancer was relatively low. For example, about 32%
Private insurance 214 (65.8)
did not know the stage of their breast cancer. A greater
Public insurance 102 (31.4)
None 9 (2.8) proportion of women reported having had a mastectomy
Self-rated health than a lumpectomy. Over half reported having had radiation
Poor/fair 89 (27.0) therapy, chemotherapy, and hormone therapy.
Good 20 (36.3) General awareness of cancer support groups was
Very good/excellent 121 (36.7) widespread; over 90% reported previously hearing of
Stage at Diagnosis support groups; 66% had heard of them through a hospital
Early (in situ, I, II) 165 (50.2)
or physician’s office. Thirty-two percent had ever attended
Late (III or IV) 59 (17.9)
Don’t know 105 (31.9)
a support group (n=105). Of those who had attended, 34%
Node involvement (n=36) were currently attending and 52% (n=55) attended
None 139 (42.1) 6 months or less.
1–3 nodes 49 (14.9) Among the 225 (68%) women who had never attended a
4–9 nodes 39 (11.8) support group, the three most frequently cited reasons for
10 or more 35 (10.6) not attending included that they had enough support from
Don’t know 68 (20.6) other sources (20%), did not need a support group (18%),
Estrogen receptor status
or were unaware of support groups (17%).
Positive 92 (28.0)
Negative 36 (10.9)
In bivariate analyses (Table 3), younger age, greater
Don not know 201 (61.1) encouragement to attend support groups from family
Histological grade of tumor members and oncologists, having had chemotherapy, poorer
Well-differentiated 14 (4.3) spiritual well-being, and greater knowledge of personal
Moderately differentiated 4 (1.2) diagnostic indicators were significantly associated with ever
Poorly differentiated 12 (3.6) having attended a support group. Women who had used a
Do not know 299 (90.9)
support group were more likely to report having received
Had the following breast cancer treatment
quite a bit or a lot of encouragement from family to attend
Mastectomy 186 (59.6)
than women who had not used a group (70.5 vs 23.8%,
200 J Cancer Surviv (2007) 1:193–204

Table 3 Sociodemographic and psychosocial correlates of having ever attended a cancer support group among Latina breast cancer survivors

Sociodemographic and psychosocial factors Never attended (n=225) Attended (n=105) p value

Predisposing Factors
Age in years (mean, sd) 59.6 (12.0) 55.4 (11.2) <0.01
Percent foreign-born 58.9 60.0 0.85
Percent married 60.3 59.1 0.83
Percent unemployed 63.4 54.3 0.12
Percent high school graduate or higher 48.6 55.5 0.26
Percent interviewed in English 38.4 36.2 0.70
Perceived benefits (mean, sd; possible range=1–4) 3.7 (0.4) 3.7 (0.5) 0.58
Enabling Factors
Percent with private health insurance 67.6 68.0 0.94
Perceived barriers (mean, sd; possible range=1–4):
Reminder of cancer 3.0 (1.2) 3.1 (1.1) 0.42
Logistical barriers 3.2 (1.0) 3.2 (1.0) 0.97
Obligations 3.0 (1.0) 3.1 (1.1) 0.34
Avoid self-disclosure 3.2 (1.1) 3.4 (0.9) 0.06
Social support from family (mean, sd; possible range=1–4):
Emotional 3.7 (0.5) 3.6 (0.6) 0.37
Informational 3.4 (0.8) 3.3 (0.9) 0.75
Instrumental 3.7 (0.5) 3.7 (0.7) 0.46
Social support from oncologist (mean, sd; possible range=1–4):
Emotional 3.4 (0.8) 3.3 (0.9) 0.26
Informational 3.6 (0.7) 3.5 (0.8) 0.30
Percent receiving quite a bit/a lot of encouragement to attend support group:
From family 23.8 70.5 <0.0001
From oncologist 25.2 45.7 <0.001
Need Factors
Self-rated health (mean, sd; possible range=1–5) 3.3 (1.1) 3.1 (1.1) 0.21
Percent with physical limitations 20.4 25.7 0.29
Percent with more than 2 years since diagnosis 57.0 66.7 0.09
Percent who had a mastectomy 57.8 63.0 0.38
Percent who had radiation therapy 66.5 68.6 0.71
Percent who had chemotherapy 51.8 74.2 <0.001
Percent who had hormone therapy 65.1 61.9 0.57
Spiritual well-being (mean, sd; possible range=0–48) 41.4 (6.8) 39.7 (7.3) <0.05
Knowledge of diagnosis index (mean, sd; possible range=0–4) 2.0 (1.0) 2.4 (1.0) <0.05

For all continuous variables, a higher score indicates more of the construct.

p<0.0001). Similarly, women who had used a group were
more likely to report having received quite a bit or a lot of
encouragement from oncologists to attend than women who
had not used a group (45.7 vs 25.2%, p<0.001).
Multivariate analyses
None of the predisposing factors was associated with ever
attending a support group, controlling for the other
variables in the model (Table 4).
Of the enabling factors, only encouragement from one’s
family to attend a support group was significantly related to
having ever attended a support group, controlling for other
variables in the model. Women who received quite a bit or
a lot of encouragement from family members to attend were
seven times more likely to attend a group than women who
received little or no encouragement (OR=7.04; 95% CI
3.72, 13.30). Encouragement from oncologists to attend a
support group was associated positively with ever attending
one in bivariate analyses, but this association was attenu-
ated in the multivariate models.
Finally, of the need factors, only spiritual well-being was
associated with having ever attended a cancer support
group. Latinas who reported better spiritual well-being were
less likely to attend support groups (OR=0.93; 95% CI
0.89, 0.98). A one-point increase on the spiritual well-being
scale was associated with a 7% decrease in the likelihood of
ever having attended a support group. Knowledge of one’s
J Cancer Surviv (2007) 1:193–204 201

Table 4 Factors associated

with ever attending a cancer Variable Unadjusted odds Adjusted odds
support group among Latina ratio (95% CI) ratioa (95% CI)
breast cancer survivors
Predisposing factors
Age (continuous) 0.97 (0.95, 0.99) 0.98 (0.95, 1.01)
Unemployed (vs. employed) 0.71 (0.44, 1.15) 1.06 (0.56, 2.00)
Enabling factors
Perceived barrier: avoid self-disclosure (continuous) 1.28 (0.98, 1.67) 1.24 (0.90, 1.72)
Received quite a bit/a lot of encouragement from family 7.28 (4.29, 12.36) 7.04 (3.72, 13.30)
to attend support group (vs a little/none)
Received quite a bit/a lot of encouragement from oncologist 2.35 (1.43, 3.87) 1.12 (0.59, 2.12)
to attend support group (vs a little/none)
Need factors
Years since diagnosis (continuous) 0.86 (0.61, 1.21) 1.54 (0.99, 2.38)
Mastectomy (vs lumpectomy) 1.25 (0.77, 2.05) 1.10 (0.54, 2.25)
Radiation (vs none) 1.14 (0.69, 1.89) 0.75 (0.36, 1.58)
Chemotherapy (vs none) 2.55 (1.51, 4.32) 1.71 (0.84, 3.49)
a
Adjusted for other variables Hormone therapy (vs none) 0.86 (0.52, 1.41) 1.00 (0.53, 1.88)
in the model; for all continuous Spiritual well-being (continuous) 0.96 (0.93, 1.0) 0.93 (0.89, 0.98)
variables, a higher score indi- Knowledge of cancer diagnosis (continuous) 1.30 (1.03, 1.65) 1.32 (0.96, 1.83)
cates more of the construct.

t4.1

diagnostic characteristics was associated positively with
support group attendance in bivariate analyses, but this
association was attenuated in the multivariate model.
Discussion
Using the Behavioral Model for Vulnerable Populations as
a guiding theoretical framework, this study sought to
identify predisposing, enabling, and need factors associated
with having ever attended a cancer support group among a
population-based sample of Latinas with breast cancer. We
found an enabling factor, that is, encouragement from
family members, to be strongly associated with having ever
attended a support group. Furthermore, spiritual well-being,
a need factor, was inversely related to having ever attended
a group.
In this study, general awareness of cancer support groups
was high, possibly reflecting an increasing integration of
psychosocial services with standard cancer care. However,
when asked about specific barriers, lack of information about
nearby cancer support groups was among the top three
barriers identified by women who had never attended a
group. Almost one-third of women reported they had ever
attended a cancer support group. This rate is slightly higher
than that reported in a 1992 National Health Interview
Survey supplement, which found that 27% of women with
breast cancer reported having received psychosocial services
post-diagnosis [36]. Half of Latinas in our sample who
attended a support group reported that their group was
conducted in Spanish or both Spanish and English. Since we
sampled counties where Spanish-language cancer support
groups existed, our results may portray a best case scenario,
and overestimate the degree to which low-income Latinas in
other areas receive supportive services [22].
Contrary to hypotheses based on the BMVP framework,
perceived benefits of and barriers to support group
participation were not independently associated with at-
tending a group. However, these items were asked with
reference to Latinas in general, and not specifically about
the respondent, which might explain the weak association
of the scale scores with use of support groups. It could be
that even when Latinas possess positive attitudes about
support groups in general, it takes specific situational cues,
such as encouragement from significant others, to move
them into action.
Consistent with the BMVP model and previous studies
conducted among White women, having adequate support
from other sources or feeling they did not need a support
group were the most frequently cited reasons for not
attending support groups [10, 19]. However, the social
support scales were not associated significantly with use of
support groups, perhaps indicating that Latinas perceive the
types of support received from family and friends as
distinct from, and not substituting for, the support offered
by support groups. Similar to one other study [19], spiritual
well-being was inversely related to having attended a
support group, suggesting that spirituality offers an alter-
202
native source of well-being and support among Latina
cancer patients [1, 15, 64].
As predicted by the BMVP model, the degree of
encouragement to attend a support group received from
families, and to a lesser degree, from oncologists, was
associated with a greater likelihood of having attended one.
Family members and oncologists are in a strategic position to
identify and motivate Latinas at high risk of psychosocial
morbidity to seek formal psychosocial assessment and
support services. Lack of encouragement from a clinician
has been identified as an important barrier to cancer support
services in previous studies [10, 19, 31]. Women with breast
cancer experience psychosocial concerns throughout various
phases of the disease continuum, especially at transition
points in their treatment (e.g., during treatment and on
completion of treatment, at follow-up visits) [37, 38].
Physicians must be prepared to deal with psychosocial
issues that can emerge throughout the breast cancer care
continuum [37]. Raising awareness among families of
cancer survivors and their physicians of the importance of
psychosocial services is important.
The association between knowledge of one’s diagnosis
and support group attendance in bivariate analyses suggests
that support groups serve as a source of information about
cancer and/or promote effective communication with
physicians. One would expect that women who experience
better communication with their clinicians might be more
knowledgeable about their diagnosis, and also be more
likely to discuss psychosocial issues and services with their
clinicians. Another possible explanation is that Latinas who
are more knowledgeable about their cancer also tend to be
more proactive in seeking support groups or have greater
access to cancer support services. Our cross-sectional study
design obscures the nature of these relationships.
This study has several limitations. First, only about a
third of the sampling frame participated; we lost over half
of potential participants due to their ineligibility or
inaccessibility. However, based on registry data, compared
to non-participants, participants were only slightly younger
at diagnosis and tended to be similar on stage at diagnosis
and county of residence. The survey was cross-sectional;
therefore, we do not know the temporal sequence of cancer
knowledge and support group participation. Also, retrospec-
tive recall of the amount of encouragement received from
oncologists and family members, time since diagnosis, and
breast cancer treatment could be biased. Additionally, we did
not ask women if they were currently in treatment at the time
of the interview, which could have influenced their use of
support groups. However, less than 2% of women were
diagnosed within less than a year of the survey and time since
diagnosis was not significantly associated with use of support
groups, indicating that the effects of being in treatment would
have been minimal. Finally, the counties selected could
J Cancer Surviv (2007) 1:193–204
represent a best-case scenario since Spanish language cancer
support groups were available in these areas.
Evidence suggests that Latinos and other minorities are
more likely than Whites to desire increased information and
access to cancer-related support [49, 60]. Furthermore, they
may be the groups that are most likely to benefit from such
services because they may be at higher risk of distress
subsequent to a cancer diagnosis [2, 4, 31]. As noted in this
study, many Spanish-speaking Latinas undergo cancer
diagnosis and treatment without ever seeing a physician
who speaks their language or using an interpreter. With the
limited availability of language assistance services and
language concordant clinicians, it is not surprising that many
of the women were unable to describe features of their
diagnosis with important prognostic significance. In our
study, 68% of women were able to report their stage at
diagnosis, although we did not assess the validity of their self-
reported stage. This is comparable to a study in which 62% of
women with breast cancer correctly identified their stage of
diagnosis reported at 3 years post-diagnosis (validated
against medical records) [52]. In another study, 92% of
women were able to correctly identify the extent of lymph
node involvement of their breast cancer when validated
against medical records, although these women tended to be
of higher socioeconomic status than our sample [45]. Both
of these studies were conducted in Australia.
Studies have identified the effectiveness of support
groups in reducing distress among breast cancer survivors
[12, 54]. Furthermore, the Association of Community
Cancer Centers’ guidelines for patient advocacy and
survivorship recommend that resources for survivors should
include access to support groups [38]. The importance of
such groups may be even greater for Latina women with
limited English proficiency since they may be at increased
risk of distress and poor communication with their cancer
care providers. However, prospective studies are needed to
better understand how women’s use of support groups
varies throughout the phases of their breast cancer care and
how the nature of the groups (content, structure, facilitator,
etc.) influences the benefits derived from such groups.
This study suggests several areas for potential interven-
tions. Emphasis needs to be placed on raising awareness
among Latina women and their families and physicians of the
nature and potential benefits of cancer support groups. Some
Latinas may resist support groups because they find it
difficult to talk to others about their cancer. Oncologists
may need to initiate discussions related to emotional well-
being, especially with older and less educated patients, since
these patients in particular tend to prefer that such discussions
be initiated by the physician [17]. To initiate such dis-
cussions, cancer care providers need tools for informing
Latina patients about psychosocial services so that patients
can make informed decisions about whether or not to
J Cancer Surviv (2007) 1:193–204
participate. Finally, we need to increase access to culturally
and linguistically appropriate cancer care and supportive
services among Latinas.
Acknowledgements This research was supported by a pilot grant
from the National Cancer Institute to Redes En Acción, grant no. U01-
CA86117 and grant no. P30-AG15272, from the Resource Centers for
Minority Aging Research program of the National Institute on Aging,
the National Institute of Nursing Research, and the National Center on
Minority Health and Health Disparities, National Institutes of Health.
Cancer incidence data used in this publication were collected by the
Greater Bay Area Cancer Registry of the Northern California Cancer
Center, under contract N01-PC-35136 with the National Cancer
Institute, National Institutes of Health, and with support from the
California Cancer Registry, a project of the Cancer Surveillance
Section, California Department of Health Services, under subcontract
1006128 with the Public Health Institute. The content of this
publication does not necessarily reflect the views or policies of the
Northern California Cancer Center, the California Public Health
Institute or the US Department of Health and Human Services, nor
does mention of trade names, commercial products, or organizations
imply endorsement by the US Government.
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