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DOI: 10.2337/diaspect.21.1.39
© 2008 by the American Diabetes Association
Feature Article/Beverly et al. |
Practice Implications of What Couples Tell Us About Type 2 Diabetes Management
Address correspondence to Elizabeth Beverly, MS, NIA Pre-Doctoral Fellow, Pennsylvania State University Department of Biobehavioral Health, 315 Health and Human Development East, University Park, PA 16802.
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Abstract |
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Diabetes is a significant and growing chronic health problem in the United States. Substantial research has documented the consistently strong link between social relationships and health. With respect to diabetes, social relationships, and particularly marriage or cohabitation, have been shown to mediate lifestyle and medical surveillance behaviors, glycemic control, and other health outcomes. Further exploration of the marital or cohabiting relationship may be especially relevant to clinicians and educators because the self-care regimen often involves spouses or significant others. With this in mind, the purpose of this study was to listen to and draw conclusions from what couples tell us about managing daily life with type 2 diabetes. Analyses revealed four core themes: educate yourselves, talk about the disease, work together, and be your own advocate. This qualitative study provided a unique perspective on couples' needs for care, which have important implications for the health community in acknowledging the spousal or cohabiting relationship in the management of diabetes.
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Introduction |
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Diabetes and its related complications represent one of the most significant and growing chronic health problems in the United States.1 Roughly 20% of all adults
60 years of age (
10 million) have diabetes, and the
vast majority have type 2
diabetes.2 With the
aging population, it is not surprising that adults in this age-group comprise
the largest proportion of people with diabetes. Considering the rapidly
increasing number of adults with diabetes and the enormous public health
burden of the disease, the development and implementation of appropriate
interventions is a crucial need. Type 2 diabetes requires adults to assume responsibility for multiple lifestyle and medical surveillance self-care behaviors to achieve and sustain optimal glycemic control.2 Lifestyle behaviors include adhering to a healthful diet and physical activity regimen, and medical surveillance behaviors include taking needed medications and maintaining proper foot care, among other tasks. The importance of behavioral adherence has been emphasized in the medical literature; yet, fewer than one in eight adults > 20 years of age who are living with diabetes follow the guidelines for optimal management.3,4 Adults also need to accept diabetes on an emotional level. Dealing with diabetes on a daily basis can be a psychological burden; adults may have negative experiences with insulin injections, needle sticks, physician visits, and anxiety caused by self-monitoring of blood glucose. Thus, understanding more fully how adults with diabetes live with and attempt to manage diabetes is crucial for developing appropriate behavioral interventions.
Given the behavioral and psychological demands of diabetes, a deeper exploration of the psychosocial factors is relevant to all aspects of diabetes management. A recent review of the literature called for research that focuses on the identification of specific psychosocial factors that influence regimen adherence and glycemic control in adults with diabetes.5 Recognizing the importance of the social context in helping adults improve self-care behaviors and glycemic control and thus reduce their risk of health complications is essential to developing more effective interventions for adults living with diabetes.6,7 Exploring the marital or cohabiting relationship may be particularly helpful to health educators because the behavior regimen (e.g., food shopping, meal preparation, and exercise) often involves spouses or significant others.8 Couples research has shown that spousal or partner support may mediate diabetes-related lifestyle and medical surveillance behaviors, glycemic control, and other health outcomes.9–16
Despite the growing body of literature on spousal or partner support and diabetes management, little is known about the psychosocial context of living with diabetes, and specifically the context of marriage or cohabitation. Therefore, to provide the highest quality of care for couples living with diabetes, we must first understand the psychosocial needs of this subpopulation. Toward this goal, the purpose of this study was to listen to and draw conclusions from what couples tell us about managing daily life with type 2 diabetes. The following sections describe the methods used, the findings, and the implications of those findings for adults with diabetes who are married or in a cohabiting relationship.
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METHODOLOGY |
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Design
Focus group methods were used to explore the psychosocial needs of couples striving to manage type 2 diabetes. The group dynamic was structured to stimulate participants with diabetes and their spouses or partners to examine the influence of their relationships on needs for care with others who were in similar situations. The groups were segmented into people with diabetes (PWD) and spouses or partners of people with diabetes (SPWD). This allowed researchers to use the shared experiences as a springboard for deeper examination and discussion of related issues, thus promoting greater depth in understanding without the potential influence or constraint exerted by their spouse or partner's presence. The research protocol was approved by the Pennsylvania State University Institutional Review Board before initiation of the study.
To maximize the phenomenon of interest, intensity sampling (a form of
purposive sampling) was used to identify and select couples living with
diabetes. Potential participants were screened by telephone for eligibility
and other sociodemographic information (e.g., birth date, age, sex,
race/ethnicity, years married or partnered, parental education, participant
education, occupation, and year of diabetes diagnosis). Couple eligibility was
determined on the basis of three criteria: couple participants were married or
cohabiting, couple participants were 50 years of age, and at least one
member of the couple had received a physician diagnosis of type 2 diabetes at
least 1 year previously. Participants were excluded if they had any
difficulties with bathing, dressing, personal hygiene, or walking or if they
were diagnosed with a stroke, cancer, or Alzheimer's disease in the past year.
Recruitment efforts were focused on the Pennsylvania State University Diabetes
Registry, as well as through advertisements in newspapers, diabetes support
group meetings, public service announcements, and flyers in community
buildings. Responding couples were mailed a cover letter describing the
study's purpose and procedures, along with two informed consent forms, which
were completed and returned to researchers in provided pre-addressed, prepaid
envelopes.
In qualitative studies, the size of the sample is determined by the quality of data. Recruitment, data collection, and analysis are reiterative, occurring simultaneously. Two criteria are used to evaluate sampling: adequacy and appropriateness.17 Adequacy addresses the volume of the data, or, in other words, there are adequate data to support the emergent insights. Appropriateness refers to the quality of that data, which means the data provide the descriptive and interpretive depth required to clearly delineate the theoretical derivation. Using these criteria, data are collected until saturation is reached, which means when no new information is generated from the participants and the derived theoretical scheme accounts for the reported experiences or insights.
In this study, recruitment efforts were suspended when 30 couples (60
adults) were successfully enrolled. Of these, 23 couples included one person
with diabetes and one who did not have diabetes. In the seven remaining
couples, both adults had diabetes; however, one was diagnosed with diabetes
within the previous year and did not meet the eligibility criteria for
participation as a person with diabetes. For the latter couples, researchers
assigned individuals who had been diagnosed with diabetes for the shorter
period of time to the SPWD group and individuals with longer-standing
diagnoses to the PWD group. Group members varied by age ( 50 years of
age), sex, race/ethnicity, and occupation; however, all group members lived in
central Pennsylvania and shared the experience of living with type 2 diabetes
themselves or of being the spouse or partner of someone with type 2
diabetes.
Procedure
Twelve 90-minute focus groups, each with 5–10 participants, were
conducted at the General Clinical Research Center in University Park, Pa., and
at the Hershey Medical Center in Hershey, Pa. A structured discussion guide
was devised, field-tested for flow and clarity of the discussion questions,
and then used by trained moderators and co-moderators to promote consistency
across the groups. Moderators were instructed in the use of directive probes
to elicit additional information and clarify ambiguous comments; co-moderators
wrote field notes to capture key points in and observations about the
discussion. All focus groups were audio-recorded and transcribed verbatim. All
names and identifiers were removed from the text to protect participant
confidentiality (e.g., "Dr. Smith from Hershey" would be replaced
by Dr. [Endocrinologist] from [medical center]"). These clean
transcripts (i.e., transcripts purged of identifiers) were used in
analysis.
Data Analysis
Qualitative data were analyzed using techniques described by
Morgan18 and
Krueger.19
Specifically, the discussion was summarized immediately after each of the
sessions; codes were developed for relevant themes, using the research
questions as guides; and the codes of new transcripts were compared to
existing codes after each session to more fully develop the properties of the
overarching categories. This process continued until saturation was reached,
that is, until no new codes or categories emerged, and the research team,
consisting of a registered dietitian, a gerontologist, and a graduate research
assistant, reached consensus that coding additional transcripts would only
repeat themes.
Credibility of the data was supported in three ways: 1) one investigator and the research assistant independently coded the data to check for inter-rater agreement; 2) other investigators reviewed the independent coding sheets to resolve discrepancies in retaining and combining transcript data; and 3) common themes were independently summarized by the first investigator and research assistant, and discrepancies were reviewed and resolved by the other investigators. Dependability of the data interpretations was supported with an audit trail to track the decision-making process.
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RESULTS |
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Table 1 provides general demographic and health characteristics of the 30 couples (n = 60) who participated in the focus groups, based on the data obtained during eligibility screening. As shown, the mean age of participants overall was 65 years, and the mean length of marriage or cohabiting relationship was 38 years, with the overwhelming majority in their first marriage. The average PWD (61.7% of participants) was a college-educated man who had lived with diabetes for 10 years, had a BMI within the obese range, took oral medications rather than insulin, and had at least one comorbid illness. The SPWDs were, on average, college-educated, younger, somewhat healthier, and had a lower BMI.
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Defining Themes
Participants discussed a variety of health care needs and preferences for
type 2 diabetes management. Although being in charge of one's own diabetes was
the predominant mode, these couples worked toward a guiding principle of
teamwork to maintain their diabetes care. Four core themes emerged from the
discussions: educate yourselves, talk about the disease, work
together, and be your own advocate. In the following sections,
we describe each of these core themes.
Table 2 presents the four major
themes, along with additional quotations and potential intervention
strategies.
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Educate yourselves.
The constant influx of new and occasionally contradictory diet, exercise,
and medication recommendations made self-care management challenging to
participants in all 12 focus groups. A man with diabetes shared what he
believed to be the most significant barrier in diabetes management: "As
a society, we have not done a very good job of teaching people what is a
healthy diet. The lesson has not been learned by many people. We need
education for the entire family."
For most couples, the lack of available diabetes-related education programs was the most significant obstacle in their management. Couples conveyed a need for educational programs to become a regular component of their diabetes management to provide PWDs and SPWDs with the most up-to-date information. As one participant indicated when describing the need for diabetes education, "If you could have an educational program like two years later after you have settled into your routine, so you know what is expected... that would be very helpful." Additionally, couples expressed dissatisfaction with existing insurance practices that did not cover multiple diabetes education classes.
All in all, couples recognized that diabetes education was a lifelong process that would continue to be needed as lifestyles changed and new information was made available.
Talk about the disease.
The inability to openly communicate on the subject of diabetes fueled
significant negative emotions, including feelings of frustration, anger, and
hopelessness, in many of the PWDs and SPWDs. The lack of communication within
the community was attributed to the public not having enough accurate
information about the disease. A PWD conveyed his sense of frustration with
the health care community's inability to talk to him about his diabetes
management: "Teach me how to live with it on a daily basis because it is
chronic—it is not going anywhere!" Both PWDs and SPWDs expressed a
desire for health care practitioners, as well as friends and family members,
to be more willing to talk about all aspects of the disease and offer
practical suggestions for successful management.
Couples maintained that talking about diabetes was a necessary first step in learning how to cope with the complexities of daily life. As one SPWD remarked, "I think the important thing is to have somebody that you can ask questions to." Thus, opportunities to talk with other couples about diabetes provided a necessary means of support, which was evidenced in the following statement: "I am finally in a place (referring to the focus group) where we can sit here, and we can share ideas. I think this is what we really need." Overall, couples wanted more opportunities to discuss their diabetes management on a daily basis, in both formal and informal settings. SPWDs also expressed a need for an open forum in which they could talk about effective ways to support their spouses or partners diagnosed with diabetes.
Work together.
Teamwork was a prominent theme throughout all 12 focus group discussions.
Both PWDs and SPWDs echoed the importance of support with regard to self-care
behaviors, emotional well-being, and overall quality of life. This sentiment
was articulated best by the husband of a PWD: "I know that my wife
taking care of her diabetes is her responsibility, but I can support it
wherever I can." Despite the acknowledged benefits of a supportive
relationship, not all participants willingly put forth a joint effort. In
cases where SPWDs played key roles in the day-to-day management of diabetes,
PWDs reported greater collective control and satisfaction with their diabetes
self-care, as noted by an older man with diabetes: "Good Lord, if it was
not for my wife, I do not know where I would be. She takes care of me. She
does it routinely with no problem. No nagging. No hassling." In cases
where SPWDs did not assume a supportive role, PWDs voiced greater confusion
and frustration with their management. A woman with diabetes described a
general dissatisfaction with her husband's lack of support by saying,
"When it comes to managing diabetes, what I would like to be different
is for us to work together with my diabetes management."
By and large, couples felt it was crucial to approach diabetes management as a team, with both the PWD and SPWD learning how to better support each other when meeting the daily demands of type 2 diabetes. As the number of adults with diabetes continues to grow, having the support of others will become increasingly important. Spousal/partner support is a vital component in the management of type 2 diabetes.
Be your own advocate.
The partnership of care described by these couples extended beyond the
health care system. All of the participants agreed that their diabetes
management was not the sole responsibility of the health care provider, but
rather was the shared responsibility of family members, physicians, and the
greater health community. In addition, successful management depended on a
couple's willingness to take the lead in management and to voice their
concerns regarding medications, complications, and the difficulties of
adhering to life-style changes (particularly diet and exercise
recommendations). A wife stressed the importance of asking for help: "I
am going to try saying my husband is a diabetic and I need your support
here."
PWDs learned to assert their specific needs while simultaneously controlling the challenges they faced in day-to-day management. One participant captured this sentiment precisely: "Really, you have to be your own advocate." Similarly, SPWDs emphasized the importance of taking an active role in the PWD's management decisions. A husband explained his sense of responsibility to his wife's diabetes management: "She has the disease, but it affects everything we do. I had to realize that this was something that affected both of us, and I have come to appreciate that."
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CONCLUSIONS |
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Diabetes represents a substantial health problem to society and, in particular, to those individuals living with diabetes. This research represents one of the first evaluations of the psychosocial needs of older married or cohabiting adults living with diabetes. Comments provided by the participants reveal important practice implications for diabetes care during midlife and older age. This study's focus on couples living with type 2 diabetes and their collective experiences with managing the disease is unique. Its results provide further insights regarding the social challenges that make diabetes management difficult for couples. The results also provide insights into what couples need from the health care community and offers strategies to best support these couples. The difficulty associated with available education programs should prompt clinicians and educators to more aggressively address the social needs of couples living with diabetes. Creative strategies are needed to educate couples about effective ways to support the spouse or partner diagnosed with diabetes. Finally, the more the community knows about diabetes, the better prepared individuals and couples will be to talk about it, manage it, and, ultimately, take responsibility for their diabetes care.
This focus group study may be limited by the small sample size, recruited largely by convenience. Thus, its findings may have limited generalizability to the population at large. Cultural and social variations regarding marital roles, diabetes beliefs, and management among varied ethnocultural groups have not been addressed and warrant further study. Finally, the study's crosssectional design limits an ability to discern causality. Notwithstanding these limitations, this study found that education, communication, support, and advocacy are of great importance in successful diabetes management.
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IMPLICATIONS |
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TopAbstractIntroductionMETHODOLOGYRESULTSCONCLUSIONSIMPLICATIONSReferences |
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The diabetes health care team is important in individualized goal-setting for older adults, but spouses, partners, other family members, and friends play an equally important role in meeting the needs for diabetes care. To improve care, the diabetes health care team should ideally target spousal/partner and associated support networks (e.g., family interventions). Older adults often have had a lifetime of experiences with diabetes, health care, and significant others that are powerful determinants of their management goals. Addressing these social influences may help the diabetes care team provide guidance for prioritizing medical treatment and preventive care while acknowledging the individual's needs and preferences for health care.
The four themes presented in this article represent four points of intervention for couples living with diabetes. Each theme addresses a component of diabetes care in the social context of couples managing diabetes. Specific implications for interventions based on each theme are suggested below.
Educate yourselves.
Education about type 2 diabetes is not something PWDs and SPWDs do once at
the time of diagnosis. Maintaining knowledge, skills, and tools in diabetes
management helps PWDs and SPWDs stay up-to-date and avoid many of the
complications associated with the disease. By learning on their own, couples
are able to plan a diabetes management program that meets their needs and is
based on their work schedules, family demands, leisure/recreational
activities, lifestyle behaviors, and other health problems. Moreover, the
diabetes health care team should strive to devote more attention to providing
accurate and sensitive education throughout the course of a couple's diabetes
care.
Talk about the disease.
The insights offered by these couples suggest that support-focused
interventions should incorporate communication strategies adapted to
diabetes-specific education. Diabetes management, as well as social
relationships, depend heavily on communication; thus, improved communication
could significantly enhance quality of life for couples living with diabetes
while also potentially encouraging open communication about diabetes within
the community. Additionally, diabetes management requires skills in problem
solving to effectively identify high-risk situations for relapse and to
minimize barriers to self-care. Together, PWDs and SPWDs can decide to either
avoid high-risk situations or generate potential solutions before such
situations arise. Collaborative decision making regarding effective solutions
to high-risk situations can improve coping with a complex disease.
Work together.
To assist couples with the day-to-day management of diabetes, future
interventions should maximize interactions with couples. The diagnosis of type
2 diabetes requires significant lifestyle modifications for PWDs and SPWDs.
The participants demonstrated that managing type 2 diabetes collectively is
achievable, but sustaining one's management may be difficult without constant
support. Both PWDs and SPWDs may need to make changes in their diet, dietary
patterns, and dietary schedules and begin or sustain an exercise program. Both
PWDs and SPWDs would benefit from education about diabetes and the
administration of medications. Each component of self-care, such as eating a
healthy diet and engaging in regular physical activity, means setting a
specific, achievable goal to be successful. Goal setting is a component of the
problem-solving process. Once a potentially effective solution to a problem
has been identified, the setting of a goal enables one to focus attention and
effort to achieve meaningful change.
Be your own advocate.
There is so much going on in a PWD's diabetes care plan that it is easy to
let health professionals (e.g., nurses, dietitians, pharmacists, doctors,
exercise physiologists, podiatrists, and social workers) worry about the
management decisions. But doing so will not result in adequate diabetes
control. PWDs need to realize that living with type 2 diabetes can be
overwhelming for any one person; having the support of one's spouse or partner
is necessary to maximize successful management and, ultimately, improve
quality of life for both partners. Together, couples can talk to their health
care providers on a regular basis. Whether couples work with one health care
provider or a team of providers, knowing their providers will enhance their
ability to communicate with them. In addition, couples can take advantage of
opportunities in their community and help facilitate community-based programs
for the management of diabetes.
All in all, opportunities abound for meaningful interactions between PWDs and SPWDs to bolster successful management of type 2 diabetes. Such interactions enable PWDs to meet their individual and social needs by encouraging them to select and initiate self-care behaviors to achieve and sustain optimal glycemic control. Couples can learn to work together to identify and engage in behaviors that can serve to buffer the effects of diabetes on health and overall quality of life.
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Acknowledgments |
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The work was partially supported by National Institute on Aging (NIA) Grant T32 AG00048 to the Pennsylvania State University and NIA Grant P30 AG024395 for "Spousal Support & Diabetes-Related Behavior Change in Middle-Aged and Older Adults" (L.A. Wray, principal investigator, and C.K. Miller and S.L. Willis, co-investigators).
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Footnotes |
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Elizabeth Beverly, MS, is an NIA pre-doctoral fellow, and Linda A. Wray, PhD, is an assistant professor of biobehavioral health in the Department of Biobehavioral Health at Pennsylvania State University in University Park. Carla K. Miller, PhD, RD, is an associate professor of human nutrition in the Department of Human Nutrition at Ohio State University in Columbus.
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