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

dialysis care or dialysis centers from their


TABLE III. Participant race/ethnicity by research site. family members doctor or dialysis center
Los Angeles Cleveland Total staff, such as social workers, dietitians/
nutritionists, and nurses. Some participants
White 8 14 22
(7) said they used the Internet for dialysis
Black/African American 6 5 11 information; however, there did not seem
Hispanic 5 1 6 to be a common source of information
Asian/Pacific Islander 2 2 online. Older participants tended not to
Total 21 20 41 have Internet experience.

Information Needs During


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


Substitutions for foods that patients dialysis patients to cope, 5 participants; National Kidney Foundations Web site.
cannot have; Medicare coverage information, 4 par- However, this was not widely known to the
Explanations for why patients cannot ticipants; participants in our study.
have certain foods and their effects on What dialysis is and how it works, 3 Other themes that emerged included
the body; and participants; family members roles in providing emo-
Balancing both the dialysis and the Long-term effects or other organ sys- tional support, medication management,
diabetes diet. tems affected by ESRD, 3 participants; and transportation for patients. Participants
Understanding medications and their reported needing information about how to
In Los Angeles, Hispanic and Asian side effects, 3 participants; and better fulfill all those roles and about what
participants indicated the need to know what Understanding how the transplant pro- to expect and look for with their patients
foods could be substituted for foods that are cess works, 3 participants. during and after dialysis treatment. Family-
staples in their cultures but are restricted in member support groups could fulfill some of
the renal diet. For example, one Hispanic these information needs, but neither face-to-
participant explained, My father loves Additional Findings
face nor Internet support groups were being
beans and cheese, but he cant eat them. At both sites, the potential need for family- utilized by the participants in our study.
Similarly, an Asian participant commented, member support groups or greater awareness We found a potential need for family-
And maybe [suggestions] for recipes with of existing support groups was identified. member support groups from participants
ethnic foods, too, because we use a lot of Participants frequently commented that they frequent comments that they found it help-
coconut milk in our Asian foods. found it helpful to talk with other family ful to talk with and learn from other fam-
The most frequent responses for the members in the triad discussions and about ily members. It may be that such support
type of exercise-related information family how much they learned just by listening groups are available but that information
members needed included: to the experiences of family members of about them has not been widely dissemi-
Recommendations for exercises dialysis other patients. However, only 1 partici- nated or that access to them may be limited
patients should do and how often; and pant mentioned attending a family-member by travel requirements. Support groups
How exercise is good or can benefit support group or even being aware of such may be more beneficial for family members
dialysis patients (e.g., helping mood). a group. than for patients, as family members may
need advice on how to fulfill the range of
Many participants reported being
Discussion supporting roles that they play, but patients
told that patients should exercise but not
already receive advice and support as a
being given specific recommendations
Our findings indicated that family members result of their greater access to health care
or examples. So family members wanted
have specific types of needs for information professionals. If support groups do not
ideas or recommendations for exercise
about dialysis and dialysis care and that already exist in a given area or at a particu-
that explained which ones would be ben-
these needs often parallel the roles they lar dialysis facility, providing family mem-
eficial and which not beneficial for dialy-
play in caring for their loved ones. The bers with the tools and resources to start a
sis patients to do. Some family members
most common theme that emerged was support group is likely to be beneficial.
whose patients were confined to wheel-
the need for nutritional information, par- The Internet may be a useful resource
chairs or had difficulty walking indicated
ticularly about how to help dialysis patients for family members in areas without easy
that ideas for patients with more limited
adhere to the renal diet and fluid intake access to face-to-face support groups. Online
physical capabilities would be helpful.
restrictions. A number of participants support groups may also be easier to access
commented that they had received informa- and even favored by those family members
Most Important Family Member tion from dialysis professionals on what who prefer to maintain the degree of privacy
Needs patients should not eat but that they needed that is possible with Internet groups.
more information on what they should eat, Our findings also suggest that family
At the end of each triad, we asked partici- such as knowing a variety of renal diet members information needs often change
pants to list the 3 things they believed were recipes they could prepare. Performing over time as patients move through the dif-
the most important issues for family mem- nutrition management was also the most ferent stages of dialysis treatment. Many
bers. The responses varied among partici- common role family members reported participants commented that caring for
pants; however, the most frequently listed playing in dialysis care. someone on dialysis is a continuous learn-
topic at both sites was diet or nutritional The Internet would seem a natural way ing process. For example, when patients
information (listed by 16 participants), to provide nutritional information to fam- were first diagnosed with ESRD and told
Other topics listed by more than two par- ily members. Renal diet recipes and lists they needed to go on dialysis, the informa-
ticipants included: of safe foods to eat could be easily stored tion needs of family members focused on
Support groups for family members, 6 in searchable lists on Web sites. Family understanding what an ESRD diagnosis
participants; members could search and select recipes means.
Emergency contact numbers, 5 par- and foods based on cultural norms and ESRD is not widely discussed in the
ticipants; patient preferences. Indeed, some of this popular media, so family members can

February 2008 Dialysis & Transplantation 5


Dialysis Family Member Needs

be expected to need a lot of basic clinical information and support needs. The
and treatment information including on Internet, including Medicares Dialysis
survival rates, causes of kidney failure, Facility Compare Web site, appears to have
and preparing for what dialysis involves. good potential to be a source for the types
The latter includes information on how to of information desired. It may also be a
find a dialysis center, what happens during method for linking family members with
dialysis treatments, and insurance coverage. others facing the same needs and for facili-
After their patients were on dialysis for a tating support networks. Doctors, nurses,
few months, family members information and other renal care professionals could
needs focused on understanding what to also take on increased roles in fulfilling the
expect as patients received dialysis. This information needs of family members and
included learning about how the dialysis thus better support their roles as caregivers
machine works, what side effects of treat- for dialysis patients during periods when
ment might occur, and how to care for a they are away from healthcare facilities.
vascular access, as well as about issues
focused on their roles in dialysis care, such Acknowledgements
as nutrition and medication management.
Information needs over longer peri- The authors would like to acknowledge
ods tended to focus on similar issues but Jennifer Uhrig, Pamela Frederick, Jayne
also included understanding the long-term Hammen, David Miranda, Kristi Klicko,
effects of dialysis on patients and new med- and Dori Schatell for their assistance with
ication and treatment advances. Although this research.
these findings suggest that informational The research was funded by the Centers
materials tailored to different stages of for Medicare and Medicaid Services under
dialysis may appeal to family members, contract number 500-00-0024. The state-
they also identify opportunities for renal ments contained in this article are solely
providers and professionals to acknowl- those of the authors and do not necessarily
edge and address the changing information reflect the views or policies of CMS. D&T
needs of family members, whether they are
new to dialysis or have years of experience References
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Most family members indicated they did chronic kidney disease patients and family members
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they were first diagnosed with ESRD. In ing in the U.S. Washington, DC: National Alliance for
Caregiving and AARP; 2005.
particular, they would like more information
3. Centers for Disease Control and Prevention.
from doctors. It is possible that in actuality, Characteristics and health of caregivers and
participants had received more information care recipientsNorth Carolina, 2005. MMWR.
2007;56:529-532.
than they thought they did, but had not read
4. Talley RC, Crews JE. Framing the public health of
through the materials they were given (e.g., caregiving. Am J Public Health. 2007;97:224-228.
brochures and pamphlets) because of feeling 5. Trisolini M, Zerhusen E, Bandel K, et al. Evaluation of
overwhelmed by the volume of information the dialysis facility compare website tool on Medicare.
gov. Dial Transplant. 2006;35:196-214.
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