'lizbeth
12-08-2012, 01:36 PM
Perceptions of marginalization in those affected by advanced
breast cancer.
Ahmed I, Harvey A, Amsellem M. Cancer Support Community,
Washington, DC
Those living with metastatic breast cancer have distinct and often
unmet needs, even compared to others with breast cancer. To
help address these needs, the Cancer Support Community has
provided for the past five years, Frankly Speaking About Cancer:
Advanced Breast Cancer, a comprehensive educational program
developed for those with metastatic breast cancer and their loved
ones. The program’s clinically facilitated evidence-based education
workshops have reached 2,690 attendees since the program began
in 2006. The workshop provides valuable information about current
treatments, clinical trials, side-effect management, and social and
emotional challenges of an advanced breast cancer diagnosis. In the
present analysis, data across years were merged to investigate the
psychosocial and educational needs of those affected by metastatic
breast cancer and their perceptions about feeling marginalized.
1,827 workshop attendees nationwide (68% response rate) have
responded to survey questions about experiences with advanced breast
cancer since the program’s inception. In addition to evaluating the
workshop and reporting their cancer history, attendees have provided
their perceptions of the needs of those with advanced breast cancer,
feelings of marginalization, and their own experiences seeking
information and support.
64.9% of respondents had been diagnosed with breast cancer; the
remainder (35.1%) served in a caregiving capacity. Most respondents
(78.5%) were Caucasian, and the mean age was 56 years. Among those
with advanced breast cancer, most (66.9%) received the diagnosis
at least two years ago. In addition, 75.1% rated themselves in “very
good” or “good” health, and 59.6% currently participated in support
groups. There was no difference in current support group participation
by time since diagnosis.
Of all respondents, the majority (61.2%) endorsed that people
with metastatic breast cancer have unique emotional, physical, and
informational needs that are often unmet. This percentage remained
unchanged across the five years of the program. Furthermore, 31.7%
of all respondents endorsed that people with metastatic breast cancer
are sometimes stigmatized by others with non-metastatic breast
cancer. Among advanced breast cancer patients, those who believed
that people with advanced breast cancer are sometimes stigmatized
were significantly more likely to currently be in a support group (χ²=
13.2, p <.01). Caregivers of advanced breast cancer patients were
equally as likely as patients to endorse that those with advanced breast
cancer have unique, unmet needs.
As the data suggest an association between feeling stigmatized and
support group participation, one goal for service delivery would
be to implement supportive services which address these unmet
needs and perceived biases. The data also suggest that addressing
concerns of those caring for advanced breast cancer patients would
be beneficial. Taken together, the data strongly support the continued
need for educational and support programs to address the needs of
those affected by advanced breast cancer.
breast cancer.
Ahmed I, Harvey A, Amsellem M. Cancer Support Community,
Washington, DC
Those living with metastatic breast cancer have distinct and often
unmet needs, even compared to others with breast cancer. To
help address these needs, the Cancer Support Community has
provided for the past five years, Frankly Speaking About Cancer:
Advanced Breast Cancer, a comprehensive educational program
developed for those with metastatic breast cancer and their loved
ones. The program’s clinically facilitated evidence-based education
workshops have reached 2,690 attendees since the program began
in 2006. The workshop provides valuable information about current
treatments, clinical trials, side-effect management, and social and
emotional challenges of an advanced breast cancer diagnosis. In the
present analysis, data across years were merged to investigate the
psychosocial and educational needs of those affected by metastatic
breast cancer and their perceptions about feeling marginalized.
1,827 workshop attendees nationwide (68% response rate) have
responded to survey questions about experiences with advanced breast
cancer since the program’s inception. In addition to evaluating the
workshop and reporting their cancer history, attendees have provided
their perceptions of the needs of those with advanced breast cancer,
feelings of marginalization, and their own experiences seeking
information and support.
64.9% of respondents had been diagnosed with breast cancer; the
remainder (35.1%) served in a caregiving capacity. Most respondents
(78.5%) were Caucasian, and the mean age was 56 years. Among those
with advanced breast cancer, most (66.9%) received the diagnosis
at least two years ago. In addition, 75.1% rated themselves in “very
good” or “good” health, and 59.6% currently participated in support
groups. There was no difference in current support group participation
by time since diagnosis.
Of all respondents, the majority (61.2%) endorsed that people
with metastatic breast cancer have unique emotional, physical, and
informational needs that are often unmet. This percentage remained
unchanged across the five years of the program. Furthermore, 31.7%
of all respondents endorsed that people with metastatic breast cancer
are sometimes stigmatized by others with non-metastatic breast
cancer. Among advanced breast cancer patients, those who believed
that people with advanced breast cancer are sometimes stigmatized
were significantly more likely to currently be in a support group (χ²=
13.2, p <.01). Caregivers of advanced breast cancer patients were
equally as likely as patients to endorse that those with advanced breast
cancer have unique, unmet needs.
As the data suggest an association between feeling stigmatized and
support group participation, one goal for service delivery would
be to implement supportive services which address these unmet
needs and perceived biases. The data also suggest that addressing
concerns of those caring for advanced breast cancer patients would
be beneficial. Taken together, the data strongly support the continued
need for educational and support programs to address the needs of
those affected by advanced breast cancer.