Volume 12 Number 4, 1999, Page 254
Social Support in Diabetes
Margaret I. Wallhagen, PhD, RN, CS, GNP
"They [family] stay on my case . . . . They see me eating something I don't have any business eating; they get the spoon, take the plate, and eat it themselves. And they consider that doing me a favor."
"She [wife] watches me like a hawk . . . . She tells me when I'm overdoing it or, 'You're eating too much of that,' or 'You're eating too much of this' . . . . I know deep in my heart what I'm supposed to do, but it kind of irks me when I have somebody telling me that I'm doing this because I know I'm doing wrong and I'm going to correct it maybe later on. But just the idea ofI don't like to be told."
"I was told that I wasn't supposed to eat white bread. He [husband] cooks biscuits. And I'm not supposed to eat but one slice of bacon. He'll cook a whole pan full of it."
Diabetes is a chronic condition that is significantly influenced by an individual's own self-care practices. Yet the lifestyle changes necessitated by approaches to management are also often difficult to implement and maintain. One factor often viewed as valuable to ongoing management is social support. However, as the above quotes indicate, "support" may be supportive or nonsupportive, depending on how it is delivered, how it is viewed, and the context within which it is provided. "Support, in other words, can consist of teaching, encouraging, and enabling another person, but it can also take the form of constraining, warning against, and doing for another."1 The relationship between social support and any given outcome is thus complex. This argues against using social support uncritically, because doing so may limit our potential to identify and maximize those aspects of social support that are key to promoting healthful behaviors in any particular individual.
How, then, does this translate into practice? How can we identify and capitalize on the positive aspects of support while minimizing the negative aspects in order to promote optimal management of diabetes? I believe this involves taking a broader view of social support.
Social support, by its very name, suggests a process that is embedded in an individual's total life space. Yet much research in this area focuses on individuals and specific relationships within the family, or attempts to identify the network of potential support resources that might be available to an individual. These are important aspects to consider, but a more holistic view may be more effective when considering the management of a complex, chronic condition such as diabetes. Figure 1 represents an attempt to place social support within a broad and holistic framework that may facilitate assessment and care planning. Components are discussed below, focusing specifically on those aspects that have received minimal attention in the literature: social context; acute versus the chronic support necessitated by a condition with a long-term and variable illness trajectory; and the life span.
Thus, roles are supported by societal norms, obligations, and responsibilities. Mercado and Vargas4 observed that in one Mexican town, 50% of the 30 people studied had poor metabolic control, yet 86.6% of those in poor control were women. Most men had their meals prepared for them, while only 13% of the women received this type of support.
The pattern identified by Mercado and Vargus also may be found in African-American families. In general, African-American men were, historically, expected to provide economic resources, while women contributed to the maintenance of home, especially cooking, and child care.5 This suggests that chronic illnesses that alter roles around food preparation may have a particular impact on African-American women. African-American men may, on the other hand, expect women to assume control of the diet management of chronic illness. This is evidenced in a study of African-American elders with type 2 diabetes, which found that the men viewed their wives as responsible for structuring the day and managing dietary requirements.6
My own studies provide some additional support for this latter finding. Many of the older African-American women interviewed defined their roles in terms of cooking and doing for the family. This came first, above care for themselves. Men usually had fewer problems with food, both because of how they defined adherence to diet and because of their dependence on wives or other women to fix their meals.
Acute Versus Chronic Support
An example of this is provided in the following interview findings. A husband noted that his wife, who had diabetes, could not eat the same foods that he did but that he tried to support her and not to tempt her. His wife, on the other hand, reported that one of the difficulties she had with management and what made her feel out of control was her husband's requests for specific foods that he liked and could not cook but that she had difficulty not eating. As she noted, "I'm saying that he can't do it, so he looks at me and he wants me to do this . . . . And I don't want to do this because I know I'm weak there . . ."
In another interview, a daughter emphasized the problem of ongoing demands as she reflected on the constant complaining she received from her mother throughout her efforts to provide support: "'We had that yesterday. I don't want that. Take that away,' and whatever, you know, and abuse. It doesn't get to be humorous anymore, it just gets to be a plain burden. And especially when you spend so much time like it's . . . . Does that happen one night? No. Two nights? No. You're talking about seven nights a week . . . I would like to be able to have some freedom from it, I really would. I'd like to see my mother take more responsibility for herself."
Thus, providing ongoing support, especially when it is rebuffed or received negatively, can create ongoing tension. This is further emphasized by a wife's comment that she often promptly left the room after she made a suggestion to her husband in order to avoid conflict. Similarly, a husband noted, "If there's something I can do to keep her pleased, it would be what I can do . . . . I could, I could irritate her, but that would make her worse. And I don't do that."
Life Span and Social Support
An older daughter who was caring for and supporting her mother who had diabetes, amputations, and poor mobility emphasized that she felt her mother had given up and was not even interested in learning anything about managing her own diabetes. While it would be important to consider the potential for depression in such a situation, it also suggests that purpose and meaning may change across the life span, and the amount of effort that one is willing to allocate to specific illness demands may vary.
Another aspect of incorporating life span concepts into social support assessments relates to the impact of chronic illness on ongoing relationship and support patterns. This is especially true of long-term marital relationships, but also of parent-child dyads. Patterns evolve across time and are often difficult to change. A wife commented on how she and her husband had always been very independent. In relation to his needs for help with managing his diabetes, she noted, " . . . he hasn't demanded any help. When he knows something's wrong, he tries to do better, you know."
Thus, just like professional care providers, families and friends can make assumptions about support needs, and individuals may have difficulty requesting needed support based on past roles. These behaviors influence management strategies and support-seeking or -giving behaviors. Considering carefully the changes in needs for different types of support and their timing during the illness trajectory are essential aspects of ongoing social support assessments and care planning.
Viewing and assessing individuals within their own life trajectory takes into account multiple competing health or life options. Benner and Wrubel7 emphasize that all decisions are situatedthat is, they are limited by the individual's embeddedness in life itself. As Hupcey8 pointed out, we "tend to assume that recipients will know what type of support they need and be willing to ask for it and accept it when offered to them. The costs and benefits of asking for and accepting support are weighted by all potential recipients of support" (p. 1238). If an individual is a support provider, becoming aware of his or her own support needs may be an evolutionary process, and any discussion may need to move external to the individual. Thus, caregivers may become able to care for themselves only when they fully appreciate that they would not be able to continue in their caregiving role without caring for themselves.
The meaning of support and the form of support that is helpful also needs to be elicited. "Support" in the form of advice from within the family, even if well intentioned and caring, may be viewed as much more problematic than advice from health professionals. This flows from the continued belief, captured by the quote at the start of this discussion, that one is "doing wrong" when one deviates from what one feels are the "rules."9 Advice then becomes a statement against one's self and may be viewed as more difficult to receive from a partner or relative than from a third party. Health practitioners often try to promote a nonjudgmental environment and may help families to do the same by becoming more attuned to the impact of words.
In addition, while continued efforts are needed to diminish the value judgments made about health behaviors, providing a larger supportive context that facilitates health-promoting behaviors within the community or at the societal level may be more effective. For example, support groups for people with diabetes allow for exchanges in a situation of common understanding. At a societal level, magazines and newspapers provide conflicting messages about food, emphasizing and promoting food as a social commodity and encouraging indulgence while at the same time presenting data on the problems of obesity, sedentary lifestyles, and food choices. This broader context sets up a nonsupportive environment that promotes negative self-evaluations and conflicted decision-making.
In summary, assessing the interactions among the multiple levels and types of support, chronicity, and life trajectory can facilitate our understanding of which forms of support will promote health behaviors and when these will be effective. This model also provides multiple levels on which to intervene and further emphasizes that social support needs will evolve and change across time and thus must be continuously reassessed.
1Kahn RL: Social support: content, causes and consequences. In Aging and Quality of Life. RP Abeles, RP, Ory HC, eds. New York, Springer Publishing Company, 1994, p. 163-84.
2Kleiman A: The Illness Narratives: Suffering, Healing, & the Human Condition. New York, Basic Books, 1988.
3Lock M: Encounters With Aging: Mythologies of Menopause in Japan and North America. Berkeley, Calif., University of California Press, 1993.
4Mercado FJ, Vargas PN: Disease and the family: differences in metabolic control of diabetes mellitus between men and women. Women and Health 15:111-21, 1989.
5Jackson JS, Chatters LM, Taylor RJ: Aging in Black America. Newbury Park, Calif., Sage Publications, 1993.
6Mitteness L, Wolfsen C, Barker J: A Comparison of Health Beliefs & Management Strategies Utilized by Black & White Elderly Adults with NIDDM: Developing Culturally Specific Educational Materials. Final Report: Grant # E74/II88, Diabetes Research and Education Foundation, 1991.
7Benner P, Wrubel J: The Primacy of Caring: Stress and Coping in Health and Illness. Menlo Park, Calif., Addison-Wesley Publishing Company, 1989.
8Hupcey JE: Clarifying the social support theory-research linkage. J Advanced Nurs 27:1231-41, 1998.
9Wallhagen M, Allen B, Phinney A: Older African-Americans with NIDDM: rules, regulations, and control. Paper presented at the 49th Annual Scientific Meeting of the Gerontological Society of America, Washington, D.C., Nov. 20, 1996.
This research was supported by an Academic Research Enhancement Award, NIH/NINR; a Faculty Development Award, School of Nursing, UCSF; and a Research Committee Award, School of Nursing, UCSF.
Margaret I. Wallhagen, PhD, RN, CS, GNP, is an associate professor in the Department of Physiological Nursing at the University of California, San Francisco.
Copyright © 1999 American Diabetes Association
Last updated: 12/99