Information Needs and Roles for Family

Members of Dialysis Patients

Karen Bandel Isenberg, MPH; Michael Trisolini, PhD, MBA

The authors are with RTI International, Waltham, Massachusetts.

OBJECTIVE: The purpose of this research was to understand the roles of family members in dialysis care and to
identify information gaps that renal professionals and organizations can address to better meet family member
needs.

METHODS: Twelve triads were conducted with 41 family members. Triads explored caregiving roles and chal-
lenges, sources of dialysis information, and information needs across stages of dialysis care and a range of topics
related to dialysis.

RESULTS: Resources and guidance for nutrition management was the most frequently reported information need. It
was also the most common challenge and the role family members most frequently experienced with dialysis care.
Other roles included providing emotional support, medication management, and transportation. Results also sug-
gested that the information needs of family members may change over time. Stages included: (1) understanding the
patients diagnosis; (2) managing dialysis and its effects; and (3) understanding the long-term effects of dialysis.

DISCUSSION: Family members information needs parallel the roles they play in caring for the patient, and these
needs can change over time. Renal providers and professionals should acknowledge and address these needs of
family members, whether they are new to dialysis or have years of experience. Informational materials tailored to
or distributed during different stages of dialysis and greater access to family-member support opportunities are
likely to be beneficial.

W
ith end-stage renal disease
(ESRD), many factors that
affect patient outcomes occur
outside the formal medical
care system and in the home environment,
such as medication adherence, diet and
fluid restrictions, and making arrangements
for consistent attendance at dialysis treat-
ment appointments.1 In the dialysis facility,
renal care professionals are responsible for
monitoring the care of patients, but in the
home family members often assume this
function.
Caregiving is a growing public health
issue, with an estimated 21% of the United
States population providing unpaid care to
an adult with a disability and or chronic
illness.2-4 This percentage is likely to grow
significantly as the population ages in com-
ing years. Caregiving ranges from helping
with activities such as managing finances,
grocery shopping, and housework to assist-
ing with aspects of personal care such as
medication management, meal preparation,
and activities of daily living.2
Results from a national survey sug-
gested that the most common challenges of
caregivers are finding time for themselves,
managing stress, and balancing work and
family responsibilities.2 In addition, 20%
of caregivers said they need help talking
with healthcare professionals and find-
ing activities to do with the person they
care for.2 Depending on the intensity of
care, caregiving can contribute to negative
effects on quality of life and physical and
mental health.2-4
To date, little research has been done
to examine the specific information needs
of dialysis family members that may help
to alleviate the challenges they experience
in their roles in dialysis care. Previous
research with dialysis family members
found they needed to be more informed
about kidney disease and to be provided
with ideas for ways they could enhance
their roles to best help the patients for
whom they were caregiving.1,5
Our study was part of an evaluation of the
Centers for Medicare and Medicaid Services
Dialysis Facility Compare (DFC) Web site
tool, which was launched in January 2001
on www.medicare.gov/dialysis. Previous
research indicated that family members saw
the resources currently on DFC as respond-
ing less directly to their needs.5 In an effort
to explore the types of information that
might help dialysis family members, this
qualitative research sought to:
1. Understand more about the roles family
members of dialysis patients adopt
with respect to dialysis care; and
2. Identify informational gaps that renal
professionals and organizations could
address to better meet the needs of
family members.

February 2008 Dialysis & Transplantation 1

 Dialysis Family Member Needs

Methods Sources of information about dialysis Table II presents the education levels
care; of participants across both testing sites.
We selected qualitative research methods Information needs across stages of Most participants had lower education lev-
because our research objectives included patients dialysis care (e.g., diagnosis els, including some college or below. The
mainly subjective and exploratory issues. with ESRD, the first few months on largest group had a high school degree or
Qualitative methods provide opportunities dialysis, and after 1 or more years on some college education.
for interaction between respondentsand dialysis); and Table III presents the race/ethnicity
between respondents and researchersthat Information needs and gaps regard- of participants at each data collection site.
can illuminate the range of reactions to a ing kidney disease, dialysis, vascular About half the participants were white, and
topic and the reasoning behind peoples access, transplants, diet/nutrition, and about one-fourth were African American.
views or opinions. With small samples exercise. Table IV presents the age distribution
of respondents, the results of qualitative of participants across both sites. Patients
research are not intended to be interpreted All of the triads were both audio- and ranged in age from 19 to 84 years old.
quantitatively or generalized to the popula- videotaped. The institutional review board More than half the participants were older
tion under study. Instead, they are intended at the Research Triangle Institute reviewed than 50. The mean age of all participants at
to generate more depth of insight into a and approved each protocol and our proce- both sites was 51.5 years old.
topic that can be especially useful in guid- dures for obtaining informed consent.
ing development or enhancing services Participant Recruitment
such as those for family members of dialy- Participants
sis patients. Data collection at each site was preceded
We conducted a series of 12 triads The 12 triads included a total of 41 fam- by a process of recruiting and scheduling
(small focus-group discussions with 3 or ily members of dialysis patients (21 in Los participants. Social workers at local dialysis
4 participants) in Los Angeles, Calif., and Angeles, 20 in Cleveland). Most were spous- facilities were contacted for names of fam-
Cleveland, Ohio. Six triads were conducted es and female. Table I presents the number ily members who indicated they would be
in each location between May and July of participants by type of family member interested in participating in this research
2006. Like a focus group, a triad is a (a participants relationship to a dialysis study and would be willing to be called
research tool that allows for collection of patient) and sex for each testing site. by study staff to discuss their potential
qualitative data by observing interactions
among a group of respondents. Data are
obtained through semi-structured group
discussions that provide insight into atti-
TABLE I. Number of participants per target audience group by
tudes, perceptions, and opinions of respon- research site.
dents that would otherwise be unlikely to Los Angeles Cleveland Total
emerge in the absence of group dynamics.
The advantage of conducting a triad is Family Member Male Female Male Female
that it strikes a balance between one-on- Spouse 4 4 3 10 21
one interviewing and larger focus groups,
Daughter/son 3 7 3 13
enabling more personal in-depth explora-
tion with each participant along with small- Parent 2 2 4
group interaction. Other* 1 1 1 3
The respondents were family mem- Total 8 13 4 16 41
bers of dialysis patients, including spouses,
*Other includes sibling, grandchild, and caregiver not biologically related to dialysis patient but considered a
children, and parents. They included both person like a mother.
primary caregivers and family members
involved in a patients care, but not in a pri-
mary role. The triads lasted up to 2 hours. TABLE II. Participant education level by research site.
We used a semi-structured moderators
Los Angeles Cleveland Total
guide with standardized probes to ensure
comparability across triads. The guide used High school 2 4 6
in Cleveland was slightly modified from High school 3 8 11
the guide used in Los Angeles based on Some college 9 3 12
the finding that some of the original ques-
tions were less useful. The moderators Associates/bachelors degree 3 4 7
guides explored several research topics, Graduate degree 3 1 4
including: Unknown 1 1
Participants roles and challenges in
Total 21 20 41
patients dialysis care;

2 Dialysis & Transplantation February 2008

Dialysis Family Member Needs
TABLE III. Participant race/ethnicity by research site.
Los Angeles
White
Black/African American
Hispanic
Asian/Pacific Islander
Total
participation. Interested individuals were
then contacted and screened, and those
eligible were scheduled to participate.
Data Analysis
We analyzed the data using a tabular matrix
for each site. This approach allowed us to
draw comparisons across each of the triads
and identify common themes across the
different research topics. The matrix con-
tained rows for each protocol question and
columns for each triad at the site. Each row
cell contained the discussions and verbatim
participant responses recorded during the
triad for that particular question. We ana-
lyzed the results by reviewing the row cells
containing the responses and discussions
for each question. We then summarized
the common findings and themes, tak-
ing into consideration differences among
the types of family member participants
(primary caregivers versus non-primary
caregivers), their relationship to the patient
(e.g., spouses, children, and parents), and
the two testing sites.
Results
Roles of Family Members in
Dialysis Care
The role that family members most fre-
quently reported being involved with at
both sites was diet and nutrition man-
agement. This included making sure that
the patients adhered to the renal diet and
fluid intake restrictions either through food
shopping, meal preparation, or monitoring
the foods or liquids the patients consumed.
As a family member said of his spouse,
My job is to buy the right food and keep
tabs on if she wants to eat something thats
not right.
Cleveland Total
8 14 22
6 5 11
5 1 6 to be a common source of information
2 2
21 20 41
Another common family member role
reported was managing medications. This
included making sure that patients not
only took their medications, but took the
right medications at the right times. Other
roles reported at both sites were providing
patients with transportation to and from
dialysis, providing support, such as listen-
ing or helping to lift the mood of patients,
and helping them when they got home
from dialysis. Additional responses includ-
ed caring for patients vascular access and
accompanying them to dialysis sessions.
Challenges
The most common challenges for family
members reported across both sites (cited
in 8 triads) involved making sure patients
adhered to the renal diet and fluid restric-
tions. A particular challenge often cited was
finding substitutions for or keeping patients
from ingesting restricted foods or drinks
they preferred. As a family member stated,
Almost everything my husband used to
like, he cant have. Other challenges listed
in two or more triads included:
Providing emotional support, particu-
larly with patients fluctuating emo-
tions and mood changes because of
dialysis (5 triads);
Medication management (4 triads);
Transportation (3 triads);
Adjusting to new roles as caregivers
and their family members decreased
independence (2 triads);
Adjusting to a decrease in social activ-
ities and travel (2 triads); and
Making sure patients engage in physi-
cal activity (2 triads).
Sources of Information about
Dialysis and Dialysis Care
Nearly all the participants at both sites indi-
cated that they received information about
dialysis care or dialysis centers from their
family members doctor or dialysis center
staff, such as social workers, dietitians/
nutritionists, and nurses. Some participants
(7) said they used the Internet for dialysis
information; however, there did not seem
online. Older participants tended not to
have Internet experience.
Information Needs During
Different Stages of Dialysis Care
We found that family members informa-
tion needs varied across three stages of
dialysis care: (1) the initial stage, around
the time of the initial ESRD diagnosis; (2)
the stage during the first few months after
starting dialysis; and (3) a subsequent stage
that started after the patient had been on
dialysis for at least 1 year.
We consistently found that family
members information needs during the
initial stage of dialysis care, around the
time of the initial diagnosis, focused on two
issues: (1) understanding the diagnosis and
why the patient needed dialysis, particularly
if the diagnosis came on suddenly; and
(2) familiarizing themselves with what
dialysis involves, including where the
patient would receive dialysis treatments
and issues regarding insurance coverage.
Table V lists common questions family
members reported wanting to know answers
to at the time of their patients diagnosis.
Family members information needs
during the second stagethe first few
months after starting dialysisfocused on
learning about dialysis, how the dialysis
machine works, and what to expect. For
example, one issue raised was learning
how fluid is taken off a patient by the dialy-
sis machine. Participants often commented
that they noticed the patients blood pres-
sure dropping significantly during dialysis,
sometimes to the point of crashing and
cramping, both of which can happen if
too much fluid is taken off. As one fam-
ily member said, Why did he get the leg
cramps? That was in the beginning, in those
first few months.
In addition, as participants were get-
ting accustomed to the patients being on
dialysis, they wanted to know what to
expect in terms of how dialysis could
affect the patients. As another participant
February 2008 Dialysis & Transplantation 3
 Dialysis Family Member Needs

attending pre-ESRD classes or seminars

TABLE IV. Participant age by research site. prior to the patients beginning dialysis.
Los Angeles Cleveland Total When participants were asked about
the kinds of information they were given
30 years 4 2 6
about dialysis, most indicated they did
3049 years 7 4 11 not receive much information beyond a
5069 years 6 9 15 patients doctor informing them a patient
70 years 3 5 8 needed dialysis. As one participant com-
mented, The doctor just said, He needs
Unknown 1 1
dialysis. The most common informa-
Total number of participants 21 20 41 tion needs reported were: (1) understand-
Mean age 47.0 years 56.1 years 51.5 years ing the effects of dialysis on the patient,
and knowing what to expect (e.g., how a
patient might feel before or after dialysis
and how blood pressure changes); and (2)
TABLE V. Common family member questions at ESRD diagnosis. understanding how dialysis treatment is
How long can someone live on dialysis? Is it permanent? performed and how the dialysis machine
What factors cause kidney failure and someone to need dialysis? works (e.g., how fluid is taken off).
How does dialysis work? How often does someone need to go to dialysis? How long We asked the respondents in each triad
do they have to be at the dialysis center? about information they were given regard-
How will I be able to pay for dialysis? What does Medicare cover? How can I get ing the different types of vascular access
Medicare coverage? and how to care for them. Based on our
How can my loved one receive a kidney transplant? findings, it was unclear whether participants
across both sites accurately understood why
fistulas are the preferred access method
when possible, but nearly all participants
commented, Is she supposed to be feeling dialysis and (2) new medication and treat- understood that catheters are more prone
tired, or is everybody? ment advances. Family members of indi- to infection. In addition, few participants
Another common issue that came up viduals on dialysis for significantly longer recalled patients being given options of
during this stage was questions about vas- periods wanted to understand why the vascular access. In terms of access care,
cular access, such as why it may have failed patients bones were beginning to weaken. participants generally stated they were told
or have had problems. As one participant Some family members also wanted to know to keep a patients access clean but did
said, His graft didnt work periodically, and how new medications might interact with not recall being given specific information
he had to have it cleaned and flushed, other medications that the patients took, about how to keep it clean. A few par-
and eventually they put another graft in, noting that they might be prescribed a ticipants reported using alcohol to clean the
and that did the same thing. new medication but not know if other pills access site. Several others indicated they
We found that family member needs should continue to be taken. knew that patients should not apply pres-
during the first few months of the patients sure to the access site or lift heavy objects,
starting dialysis focused on some common particularly with fistulas and grafts.
roles family members adopt, such as man- Information about Kidney Most participants recalled being told
aging nutrition, managing medication, and Disease and Dialysis Topics about kidney transplants or recalled that the
caring for vascular access. The issues raised patient had been told about kidney trans-
included understanding what foods dialysis The most common gap reported in informa- plants. However, few participants reported
patients can eat, learning about patients tion related to understanding ESRD was that their patient was on a transplant wait-
medications, and being able to identify about the causes of kidney disease (e.g., if ing list. Most participants commented that
potential problems with vascular access, its hereditary). We found that participants their patients were either ineligible because
such as knowing when it might be clotting tended to assess the amount of information of multiple health complications or that
and who to call in that emergency situation. they were given based on what the patients they assumed that their patients were too
When we asked participants about doctors told them. We found that most par- old for transplants. Overall, our findings
their information needs during the third ticipants at both sites commented that they indicated that participants did not have a
stage of care, after the patients had been did not receive much information beyond clear understanding of kidney transplant
on dialysis for 1 or more years, many a patients doctor telling them that patient eligibility requirements.
responses were similar to earlier comments needed dialysis. Although some participants The most frequent responses for the
focusing on diet and medication manage- reported knowing that the patients were type of nutritional information participants
ment. However, two new issues raised going to need dialysis at some point in the needed included:
during this period were: (1) long-term future, most described more sudden ESRD Lists of what patients can and cannot
effects and potential complications from diagnoses. In addition, very few reported eat;

4 Dialysis & Transplantation February 2008

Dialysis Family Member Needs
Recipes;
Substitutions for foods that patients
cannot have;
Explanations for why patients cannot
have certain foods and their effects on
the body; and
Balancing both the dialysis and the
diabetes diet.
In Los Angeles, Hispanic and Asian
participants indicated the need to know what
foods could be substituted for foods that are
staples in their cultures but are restricted in
the renal diet. For example, one Hispanic
participant explained, My father loves
beans and cheese, but he cant eat them.
Similarly, an Asian participant commented,
And maybe [suggestions] for recipes with
ethnic foods, too, because we use a lot of
coconut milk in our Asian foods.
The most frequent responses for the
type of exercise-related information family
members needed included:
Recommendations for exercises dialysis
patients should do and how often; and
How exercise is good or can benefit
dialysis patients (e.g., helping mood).
Many participants reported being
told that patients should exercise but not
being given specific recommendations
or examples. So family members wanted
ideas or recommendations for exercise
that explained which ones would be ben-
eficial and which not beneficial for dialy-
sis patients to do. Some family members
whose patients were confined to wheel-
chairs or had difficulty walking indicated
that ideas for patients with more limited
physical capabilities would be helpful.
Most Important Family Member
Needs
At the end of each triad, we asked partici-
pants to list the 3 things they believed were
the most important issues for family mem-
bers. The responses varied among partici-
pants; however, the most frequently listed
topic at both sites was diet or nutritional
information (listed by 16 participants),
Other topics listed by more than two par-
ticipants included:
Support groups for family members, 6
participants;
Emergency contact numbers, 5 par-
ticipants;
Providing emotional support to help
dialysis patients to cope, 5 participants;
Medicare coverage information, 4 par-
ticipants;
What dialysis is and how it works, 3
participants;
Long-term effects or other organ sys-
tems affected by ESRD, 3 participants;
Understanding medications and their
side effects, 3 participants; and
Understanding how the transplant pro-
cess works, 3 participants.
Additional Findings
At both sites, the potential need for family-
member support groups or greater awareness
of existing support groups was identified.
Participants frequently commented that they
found it helpful to talk with other family
members in the triad discussions and about
how much they learned just by listening
to the experiences of family members of
other patients. However, only 1 partici-
pant mentioned attending a family-member
support group or even being aware of such
a group.
Discussion
Our findings indicated that family members
have specific types of needs for information
about dialysis and dialysis care and that
these needs often parallel the roles they
play in caring for their loved ones. The
most common theme that emerged was
the need for nutritional information, par-
ticularly about how to help dialysis patients
adhere to the renal diet and fluid intake
restrictions. A number of participants
commented that they had received informa-
tion from dialysis professionals on what
patients should not eat but that they needed
more information on what they should eat,
such as knowing a variety of renal diet
recipes they could prepare. Performing
nutrition management was also the most
common role family members reported
playing in dialysis care.
The Internet would seem a natural way
to provide nutritional information to fam-
ily members. Renal diet recipes and lists
of safe foods to eat could be easily stored
in searchable lists on Web sites. Family
members could search and select recipes
and foods based on cultural norms and
patient preferences. Indeed, some of this
information is currently available on the
National Kidney Foundations Web site.
However, this was not widely known to the
participants in our study.
Other themes that emerged included
family members roles in providing emo-
tional support, medication management,
and transportation for patients. Participants
reported needing information about how to
better fulfill all those roles and about what
to expect and look for with their patients
during and after dialysis treatment. Family-
member support groups could fulfill some of
these information needs, but neither face-to-
face nor Internet support groups were being
utilized by the participants in our study.
We found a potential need for family-
member support groups from participants
frequent comments that they found it help-
ful to talk with and learn from other fam-
ily members. It may be that such support
groups are available but that information
about them has not been widely dissemi-
nated or that access to them may be limited
by travel requirements. Support groups
may be more beneficial for family members
than for patients, as family members may
need advice on how to fulfill the range of
supporting roles that they play, but patients
already receive advice and support as a
result of their greater access to health care
professionals. If support groups do not
already exist in a given area or at a particu-
lar dialysis facility, providing family mem-
bers with the tools and resources to start a
support group is likely to be beneficial.
The Internet may be a useful resource
for family members in areas without easy
access to face-to-face support groups. Online
support groups may also be easier to access
and even favored by those family members
who prefer to maintain the degree of privacy
that is possible with Internet groups.
Our findings also suggest that family
members information needs often change
over time as patients move through the dif-
ferent stages of dialysis treatment. Many
participants commented that caring for
someone on dialysis is a continuous learn-
ing process. For example, when patients
were first diagnosed with ESRD and told
they needed to go on dialysis, the informa-
tion needs of family members focused on
understanding what an ESRD diagnosis
means.
ESRD is not widely discussed in the
popular media, so family members can
February 2008 Dialysis & Transplantation 5
 Dialysis Family Member Needs
be expected to need a lot of basic clinical
and treatment information including on
survival rates, causes of kidney failure,
and preparing for what dialysis involves.
The latter includes information on how to
find a dialysis center, what happens during
dialysis treatments, and insurance coverage.
After their patients were on dialysis for a
few months, family members information
needs focused on understanding what to
expect as patients received dialysis. This
included learning about how the dialysis
machine works, what side effects of treat-
ment might occur, and how to care for a
vascular access, as well as about issues
focused on their roles in dialysis care, such
as nutrition and medication management.
Information needs over longer peri-
ods tended to focus on similar issues but
also included understanding the long-term
effects of dialysis on patients and new med-
ication and treatment advances. Although
these findings suggest that informational
materials tailored to different stages of
dialysis may appeal to family members,
they also identify opportunities for renal
providers and professionals to acknowl-
edge and address the changing information
needs of family members, whether they are
new to dialysis or have years of experience
with patients on dialysis.
Most family members indicated they did
not receive enough information about their
patients kidney disease or dialysis when
they were first diagnosed with ESRD. In
particular, they would like more information
from doctors. It is possible that in actuality,
participants had received more information
than they thought they did, but had not read
through the materials they were given (e.g.,
brochures and pamphlets) because of feeling
overwhelmed by the volume of information
or having difficulty understanding it during
an emotional time such as first learning of
this very serious diagnosis.
Physicians and other care providers
need to be aware of the limited capacity for
information that patients and their family
members have in these stressful situations.
In addition, given that most participants
said they sought information from other
individuals, family members may prefer to
receive information face to face or may best
digest some types of information when it is
given in that more personal type of setting.
We found family members of dia-
lysis patients to have a range of different
6 Dialysis & Transplantation February 2008
information and support needs. The
Internet, including Medicares Dialysis
Facility Compare Web site, appears to have
good potential to be a source for the types
of information desired. It may also be a
method for linking family members with
others facing the same needs and for facili-
tating support networks. Doctors, nurses,
and other renal care professionals could
also take on increased roles in fulfilling the
information needs of family members and
thus better support their roles as caregivers
for dialysis patients during periods when
they are away from healthcare facilities.
Acknowledgements
The authors would like to acknowledge
Jennifer Uhrig, Pamela Frederick, Jayne
Hammen, David Miranda, Kristi Klicko,
and Dori Schatell for their assistance with
this research.
The research was funded by the Centers
for Medicare and Medicaid Services under
contract number 500-00-0024. The state-
ments contained in this article are solely
those of the authors and do not necessarily
reflect the views or policies of CMS. D&T
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