Summary: AF4Q Diabetes Consumer Understanding Focus Groups Diabetes seems to have a stigma associated with it that makes those diagnosed …
Summary: AF4Q Diabetes Consumer Understanding Focus Groups
Prepared by: Judy Hirsh, Senior Customer Marketing Manager
P G Healthcare Consumer Institute
This summarizes key findings from Round 1 of the Diabetes consumer
understanding focus groups conducted with 20 women with diabetes in
Cincinnati on November 6-7, 2007 This research is part of the work of the
Consumer Engagement workgroup for Cincinnati AF4Q
BACKGROUND
This research is the first part of 4 rounds of research to accomplish the
following objectives:
1 Develop a deep understanding of consumers with adult, Type 2
diabetes:
Related to their diagnosis, care, relationship with their
physician/other providers and impact of disease on their lives
Their understanding of and interest in diabeties health care quality
standards/guidelines
2 Develop a motivating concept/message that can be used across all AF4Q
communication/initiatives to build awareness of diabetic guidelines and
encourage self-management
Round 1 research covered the first objective; the next 3 rounds of research
will focus on the second objective
There were 3 focus groups consisting of
20 women with type 2 diabetes: 15
insured, 2 Medicaid and 3 uninsured women The insured women were
recruited via GE and Mercy Hospitals diabetes programs and the
Medicaid/uninsured via the Lincoln Heights Health Clinic
The research was conducted by Beth Powers of Consumer Power, an independent
market research company The methodology used a combination of discussion
and picture prompts to secure their input discussion guide attached
Pictures were used to help the women identify their emotions and feelings:
1 when diagnosed with diabetes, 2 what its like living with diabetes,
and 3 to describe how their diabetes care makes them feel Collages with
representative pictures and participant verbatims were created to better
communicate the key emotions to the AF4Q team see attached This
methodology served as an effective platform for eliciting in-depth consumer
understanding about their emotions, experiences and needs in addition to
their discussion about standard of care guidelines and NCQA/ADA Physician
Recognition
KEY FINDINGS
Being Diagnosed With Diabetes
1 Although most of the participants had diabetes in their family, some
thought it could never happen to me while
others assumed I knew it
was coming When asked to remember when they were diagnosed the
general response was that the memory was still vivid, raw and could be
recalled like yesterday
2 The participants recalled a range of emotions experienced when first
diagnosed with most feeling: fear of the unknown, of dying, of
blindness/amputation, shots/insulin, shock, anger, loss of control,
denial, depression, guilt, overwhelmed and lost clueless A couple
of women viewed the diagnosis as manageable and were hopeful
3 Despite a strong family history of diabetes and many of the women
talked about close family members who died of or suffer from diabetes
complications, none of the women had taken proactive, preventive
actions eg diet, weight loss, exercise to reduce their risk of
diabetes Additionally only one of the participants recognized or
expressed concern about the risk posed to the next generation or
encouraging their children to take such steps
Living With Diabetes
4 Diabetes seems to have a stigma associated with it that makes those
diagnosed feel a sense of shame that they have the
disease Several
women havent told anyone beyond their immediate family that they have
diabetes Two newly diagnosed participants hadnt even told their
husbands yet and one of them lied about where she was since she didnt
want to tell him about the focus group The women said they dont
want others to know they have diabetes because they will be looked at
differently and will be regarded as less than others They said
some people make them feel like its their own fault that they have
diabetes particularly because they are overweight
5 Generally, food/diet are the toughest daily challenges The women we
talked to at Mercy had taken a nutrition class and were positive about
how helpful it was Some of the others had also taken classes or had
a session with a dietician with mixed reaction Many of the women
felt that the advice was cookie-cutter The food/diet challenge is
how to adapt their foods to be diabetic-friendly and how to plan meals
that would work for them and be acceptable to their family The non-
Caucasian women African-American and Indian said they didnt want to
eat foods
of another culture and were unwilling to make drastic diet
changes and were therefore unsuccessful at keeping their diabetes
under control
6 There is probably a high incidence of depression among people with
diabetes Many of the women talked about being depressed While some
had been diagnosed by their physician and had an anti-depressant
prescribed there could be a high incidence of undiagnosed clinical
depression based on the numerous comments we heard combined with their
comments about being chronically tired
7 Many of the participants crave social support and information The
women at Lincoln Heights and GE all traded phone numbers to keep in
touch and help each other Several said the focus group was the first
time they ever discussed their feelings about their diabetes with
others This was evidence of the lack of social acceptability some of
the women feel regarding their disease For many of these women the
focus group was like therapy and they recognized they werent the only
ones with certain questions, concerns, challenges and feelings
Diabetes Care Received
8 Overall the
women are very inconsistent in taking their medication and
following the appropriate diet/exercise Most are poorly informed
about their medications and concerned about side effects They dont
seem to ask a lot of questions of their physician or pharmacist One
woman gained 100 pounds without even questioning her physician about
the drug he prescribed
9 There were consistent responses across all three groups, insured and
uninsured/underinsured, related to their experiences, emotions and
needs However, the Lincoln Heights group faced unique challenges due
to lack of insurance or poor coverage One difference was physician
direction related to their weight The uninsured/Medicaid women were
told to lose weight while the insured women cited watch your
weight as the physician direction Both groups said this advice
wasnt helpful because the physicians never told them how All the
Lincoln Heights women had been with and without insurance at different
times and spoke about how they were treated better with insurance
The women without insurance feel very vulnerable Two are paying cash
for
prescriptions and extending the time between physician visits
The other uninsured woman who is without her diabetes prescriptions or
any medical care, is fully aware of her health risks, has no safety
net and has resigned herself to her own death
10 Its just your diabetes is a common catch-all explanation cited by
physicians and friends/family for any physical problem This makes
the person with diabetes feel like no one is listening, caring or
understanding because everything is blamed on the disease
11 Although all the women had concomitant conditions, the Lincoln Heights
women were forced to prioritize and select which medical care they
would receive Since the Lincoln Heights women either had no
insurance or poor coverage and couldnt afford their medical
care/prescriptions each individual decided which medical area was most
critical and where shes spend her very limited cash eg paying for
a diabetes prescription vs a pap test or an eye exam This
prioritizing and decision making was done without consulting their
physician
Quality and Standard of Care Guidelines
12 The participants
defined quality medical care in terms of good
doctor/patient relationship To these women quality is all about a
doctor who listens, spends time with them, shows caring by how they
communicate eg makes eye contact rather than keeping their nose in
the medical chart and writing and getting their questions answered
It is not defined by medical tests and procedures These findings are
consistent with the extensive research the Procter Gamble Healthcare
Consumer Institute has conducted to understand how people view quality
and assess their physician/physician practice For perspective, the
term PG HCI uses is a caring partnership to summarize similar input
from consumers In this research the women who were most confident,
hopeful and empowered talked about a strong relationship with their
doctor and a sense of partnership
13 No one was aware of standard of care guidelines for diabetes and all
were very interested in the checklist shared with them see attached
The term standard of care isnt meaningful, but the idea of a list
with third party credentials affiliated with it eg American
Diabetes Association is meaningful and important With some
exceptions, the insured women get many or most of the tests; there was
less consistency among the Lincoln Heights women, even when they
regularly see their physician Some women had never heard of an A1C
test; most have had a visual foot exam; few have had their feet tested
with an instrument to check ability to feel sensation; and some hadnt
had tests for cholesterol or kidney function Some participants said
they want to share this list with their physician to make sure they
receive this level of care; a couple who are receiving these tests
want to share it to show their physician to show they appreciate
getting recommended care; and others who were not getting all these
tests plan to switch physicians and asked others for the names of
their doctors
14 Based on feedback from the participants and the challenges they face,
the following areas should be included as part of the standard of care
guidelines for physicians: weight, diet, exercise, and screening for
depression
15 Comparing diabetes awareness today to cholesterol
awareness 25 years
ago made sense to the participants as a way to show the power of
public/medical advocacy and education campaigns At one time no one
knew about cholesterol levels, HDL/LCL/ or what to do about it The
participants responded positively to the check list as information to
build awareness and ensure that physicians/patients are taking the
right actions to manage the disease
NCQA/ADA Physician Recognition Program
16 There was no awareness of the NCQA/ADA Physician Recognition Program
for Diabetes It was regarded as a nice to know It was not very
important to the women who have a strong relationship with their
physician They indicated that even if they arent receiving all the
tests on the standard of care list, a caring physician/patient
relationship will have more weight than the NCQA/ADA Recognition The
Recognition could be meaningful to patients who are not satisfied with
their physician due to poor communication or substandard medical
care or potentially to newly diagnosed patients who want to make sure
they are getting the right care for their diabetes However, the
standard of care check list was more important and more likely to
prompt action than the Recognition
Sources of Information
17 The major sources of diabetes information cited were: a diabetes
magazine thats free perhaps from the ADA; free literature at the
pharmacy counter and internet among insured One woman receives
information and a nurse phone call monthly from Humana The women
would like more information, but most arent proactive unless they are
looking on-line Friends/family with diabetes are another source of
information
NEXT STEPS
We are conducting 2 additional rounds of research with 8 of the women who
participated in Round 1 Women were selected based on the quality of their
input in the focus groups and to represent a broad cross-section of women
with diabetes Sixty minute one-on-one interviews are being conducted
during Rounds 2 and 3, November 13 and 20 respectively In Round 2
components of a communication concept were explored and in Round 3
alternative communication concepts will be tested In Round 4 the final
concepts will be tested among a different group of women with diabetes
The final concept will be
the basis for developing a consumer copy
strategy to guide all consumer targeted communication Specific next steps
regarding copy strategy development and communication strategy/plan
development will be worked by the CE Workgroup final timing TBD
