Information Needs and Roles for Family Members of Dialysis Patients
Abstract
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 challenges, 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 suggested that the information needs of family members may change over time. Stages included: (1) understanding the patient's 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.
With 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 treatment 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 coming years. Caregiving ranges from helping with activities such as managing finances, grocery shopping, and housework to assisting with aspects of personal care such as medication management, meal preparation, and activities of daily living.2
Results from a national survey suggested 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 finding 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
- 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.
Methods
We selected qualitative research methods because our research objectives included mainly subjective and exploratory issues. Qualitative methods provide opportunities for interaction between respondents-and between respondents and researchers-that can illuminate the range of reactions to a topic and the reasoning behind people's views or opinions. With small samples of respondents, the results of qualitative research are not intended to be interpreted quantitatively or generalized to the population under study. Instead, they are intended to generate more depth of insight into a topic that can be especially useful in guiding development or enhancing services such as those for family members of dialysis patients.
We conducted a series of 12 triads (small focus-group discussions with 3 or 4 participants) in Los Angeles, Calif., and Cleveland, Ohio. Six triads were conducted in each location between May and July 2006. Like a focus group, a triad is a research tool that allows for collection of qualitative data by observing interactions among a group of respondents. Data are obtained through semi-structured group discussions that provide insight into attitudes, perceptions, and opinions of respondents that would otherwise be unlikely to emerge in the absence of group dynamics. The advantage of conducting a triad is that it strikes a balance between one-onone interviewing and larger focus groups, enabling more personal in-depth exploration with each participant along with smallgroup interaction.
The respondents were family members of dialysis patients, including spouses, children, and parents. They included both primary caregivers and family members involved in a patient's care, but not in a primary role. The triads lasted up to 2 hours.
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Participants' roles and challenges in patients' dialysis care;
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Sources of information about dialysis care;
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Information needs across stages of patients' dialysis care (e.g., diagnosis with ESRD, the first few months on dialysis, and after 1 or more years on dialysis); and
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Information needs and gaps regarding kidney disease, dialysis, vascular access, transplants, diet/nutrition, and exercise.
All of the triads were both audio-and videotaped. The institutional review board at the Research Triangle Institute reviewed and approved each protocol and our procedures for obtaining informed consent.
Participants
The 12 triads included a total of 41 family members of dialysis patients (21 in Los Angeles, 20 in Cleveland). Most were spouses and female. Table I presents the number of participants by type of family member (a participant's relationship to a dialysis patient) and sex for each testing site.
| Family Member | Los Angeles | Cleveland | Total | ||
|---|---|---|---|---|---|
| Male | Female | Male | Female | ||
| Spouse | 4 | 4 | 3 | 10 | 21 |
| Spouse | 4 | 4 | 3 | 10 | 21 |
| Daughter/son | 3 | 7 | – | 3 | 13 |
| Parent | – | 2 | – | 2 | 4 |
| Other* | 1 | – | 1 | 1 | 3 |
| Total | 8 | 13 | 4 | 16 | 41 |
- * Other includes sibling, grandchild, and caregiver not biologically related to dialysis patient but considered a person “like a mother.”
Table II presents the education levels of participants across both testing sites. Most participants had lower education levels, including some college or below. The largest group had a high school degree or some college education.
| Los Angeles | Cleveland | Total | |
|---|---|---|---|
| < High school | 2 | 4 | 6 |
| High school | 3 | 8 | 11 |
| Some college | 9 | 3 | 12 |
| Associate's/bachelor's degree | 3 | 4 | 7 |
| Graduate degree | 3 | 1 | 4 |
| Unknown | 1 | – | 1 |
| Total | 21 | 20 | 41 |
Table III presents the race/ethnicity of participants at each data collection site. About half the participants were white, and about one-fourth were African American.
| Los Angeles | Cleveland | Total | |
|---|---|---|---|
| White | 8 | 14 | 22 |
| Black/African American | 6 | 5 | 11 |
| Hispanic | 5 | 1 | 6 |
| Asian/Pacific Islander | 2 | – | 2 |
| Total | 21 | 20 | 41 |
Table IV presents the age distribution of participants across both sites. Patients ranged in age from 19 to 84 years old. More than half the participants were older than 50. The mean age of all participants at both sites was 51.5 years old.
| Los Angeles | Cleveland | Total | |
|---|---|---|---|
| < 30 years | 4 | 2 | 6 |
| 30–49 years | 7 | 4 | 11 |
| 50–69 years | 6 | 9 | 15 |
| 70 + years | 3 | 5 | 8 |
| Unknown | 1 | – | 1 |
| Total number of participants | 21 | 20 | 41 |
| Mean age | 47.0 years | 56.1 years | 51.5 years |
Participant Recruitment
Data collection at each site was preceded by a process of recruiting and scheduling participants. Social workers at local dialysis facilities were contacted for names of family members who indicated they would be interested in participating in this research study and would be willing to be called by study staff to discuss their potential 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 contained 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 analyzed the results by reviewing the row cells containing the responses and discussions for each question. We then summarized the common findings and themes, taking 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 frequently reported being involved with at both sites was diet and nutrition management. 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 that's not right.”
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 listening or helping to lift the mood of patients, and helping them when they got home from dialysis. Additional responses included caring for patients' vascular access and accompanying them to dialysis sessions.
Challenges
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Providing emotional support, particularly with patients' fluctuating emotions and mood changes because of dialysis (5 triads);
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Medication management (4 triads);
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Transportation (3 triads);
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Adjusting to new roles as caregivers and their family members' decreased independence (2 triads);
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Adjusting to a decrease in social activities and travel (2 triads); and
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Making sure patients engage in physical activity (2 triads).
Sources of Information about Dialysis and Dialysis Care
Nearly all the participants at both sites indicated that they received information about dialysis care or dialysis centers from their family member's 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 to be a common source of information online. Older participants tended not to have Internet experience.
Information Needs During Different Stages of Dialysis Care
We found that family members' information 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 patient's diagnosis.
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Family members' information needs during the second stage-the first few months after starting dialysis-focused 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 dialysis machine. Participants often commented that they noticed the patients' blood pressure 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 family member said, “Why did he get the leg cramps? That was in the beginning, in those first few months.”
In addition, as participants were getting 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 commented, “Is she supposed to be feeling tired, or is everybody?”
Another common issue that came up during this stage was questions about vascular access, such as why it may have failed or have had problems. As one participant said, “His graft didn't work periodically, and he had to have it cleaned and flushed, and eventually they put another graft in, and that did the same thing.”
We found that family member needs during the first few months of the patients starting dialysis focused on some common roles family members adopt, such as managing nutrition, managing medication, and caring for vascular access. The issues raised included understanding what foods dialysis patients can eat, learning about patients' medications, and being able to identify potential problems with vascular access, such as knowing when it might be clotting and who to call in that emergency situation.
When we asked participants about their information needs during the third stage of care, after the patients had been on dialysis for 1 or more years, many responses were similar to earlier comments focusing on diet and medication management. However, two new issues raised during this period were: (1) long-term effects and potential complications from dialysis and (2) new medication and treatment advances. Family members of individuals on dialysis for significantly longer periods wanted to understand why the patients' bones were beginning to weaken. Some family members also wanted to know how new medications might interact with other medications that the patients took, noting that they might be prescribed a new medication but not know if other pills should continue to be taken.
Information about Kidney Disease and Dialysis Topics
The most common gap reported in information related to understanding ESRD was about the causes of kidney disease (e.g., if it's hereditary). We found that participants tended to assess the amount of information they were given based on what the patients' doctors told them. We found that most participants at both sites commented that they did not receive much information beyond a patient's doctor telling them that patient needed dialysis. Although some participants reported knowing that the patients were going to need dialysis at some point in the future, most described more sudden ESRD diagnoses. In addition, very few reported attending pre-ESRD classes or seminars prior to the patients beginning dialysis.
When participants were asked about the kinds of information they were given about dialysis, most indicated they did not receive much information beyond a patient's doctor informing them a patient needed dialysis. As one participant commented, “The doctor just said, ‘He needs dialysis.’” The most common information needs reported were: (1) understanding 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) understanding how dialysis treatment is performed and how the dialysis machine works (e.g., how fluid is taken off).
We asked the respondents in each triad about information they were given regarding the different types of vascular access and how to care for them. Based on our findings, it was unclear whether participants across both sites accurately understood why fistulas are the preferred access method when possible, but nearly all participants understood that catheters are more prone to infection. In addition, few participants recalled patients being given options of vascular access. In terms of access care, participants generally stated they were told to keep a patient's access clean but did not recall being given specific information about how to keep it clean. A few participants reported using alcohol to clean the access site. Several others indicated they knew that patients should not apply pressure to the access site or lift heavy objects, particularly with fistulas and grafts.
Most participants recalled being told about kidney transplants or recalled that the patient had been told about kidney transplants. However, few participants reported that their patient was on a transplant waiting list. Most participants commented that their patients were either ineligible because of multiple health complications or that they assumed that their patients were too old for transplants. Overall, our findings indicated that participants did not have a clear understanding of kidney transplant eligibility requirements.
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Lists of what patients can and cannot eat;
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Recipes;
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Substitutions for foods that patients cannot have;
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Explanations for why patients cannot have certain foods and their effects on the body; and
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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 can't 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.”
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Recommendations for exercises dialysis patients should do and how often; and
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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 beneficial and which not beneficial for dialysis patients to do. Some family members whose patients were confined to wheelchairs or had difficulty walking indicated that ideas for patients with more limited physical capabilities would be helpful.
Most Important Family Member Needs
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Support groups for family members, 6 participants;
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Emergency contact numbers, 5 participants;
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Providing emotional support to help dialysis patients to cope, 5 participants;
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Medicare coverage information, 4 participants;
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What dialysis is and how it works, 3 participants;
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Long-term effects or other organ systems affected by ESRD, 3 participants;
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Understanding medications and their side effects, 3 participants; and
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Understanding how the transplant process works, 3 participants.
Additional Findings
At both sites, the potential need for familymember 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 participant 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, particularly about how to help dialysis patients adhere to the renal diet and fluid intake restrictions. A number of participants commented that they had received information 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 family 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 Foundation's Web site. However, this was not widely known to the participants in our study.
Other themes that emerged included family members' roles in providing emotional 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. Familymember support groups could fulfill some of these information needs, but neither face-toface nor Internet support groups were being utilized by the participants in our study.
We found a potential need for familymember support groups from participants' frequent comments that they found it helpful to talk with and learn from other family members. It may be that such support groups are available but that information about them has not been widely disseminated 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 particular dialysis facility, providing family members 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 different stages of dialysis treatment. Many participants commented that caring for someone on dialysis is a continuous learning process. For example, when patients were first diagnosed with ESRD and told they needed to go on dialysis, the information 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 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 treatment 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 periods tended to focus on similar issues but also included understanding the long-term effects of dialysis on patients and new medication 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 acknowledge 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 dialysis patients to have a range of different information and support needs. The Internet, including Medicare's 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 facilitating 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 statements contained in this article are solely those of the authors and do not necessarily reflect the views or policies of CMS.
