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. Author manuscript; available in PMC: 2015 Oct 24.
Published in final edited form as: Diabetes Educ. 2010 Feb 24;36(3):473–482. doi: 10.1177/0145721710362108

PERCEIVED RISK OF AMPUTATION, EMOTIONS, AND FOOT SELF-CARE AMONG ADULTS WITH TYPE 2 DIABETES

Melissa Scollan-Koliopoulos 1, Elizabeth A Walker 2, David Bleich 3
PMCID: PMC4617675  NIHMSID: NIHMS730308  PMID: 20181805

Abstract

Purpose

The purpose of this study was to determine the influence of having a family member who experienced an amputation on one’s own perceived risk and fear of experiencing a diabetes-related amputation.

Methods

This was a descriptive cross-sectional study using paper-and-pencil surveys by mail. Adults with type 2 diabetes and a family history of diabetes attending a self-management education program in the Metropolitan New York/New Jersey area were recruited. Measures were completed about risk perception and fear of amputation, emotional representations of diabetes from the Illness Perception Questionnaire, and the foot self-care behavior component of the Summary of Diabetes Self-care Activities Survey. We estimated the variability in foot self-care that was accounted for by risk perception and fearful memories.

Results

In those who remembered a family member needing an amputation, high perceived risk and fear was associated with less routine foot self-care. For those without family history of amputation, fear was positively associated with foot self-care.

Conclusions

Motivation for foot self-care behavior may be driven by risk perception and emotional responses. The ways in which risk perception and fear influence motivation for preventive foot self-care behavior is influenced by whether or not one’s family member was affected by an amputation. Probing about the influence of one’s legacy of diabetes may be helpful when customizing education plans.

Keywords: diabetes, risk perception, coping, illness representation, amputation, legacy


Lower extremity complications leading to amputation is a poor diabetes outcome that can have extreme physical, emotional and psychological consequences1. Foot self-care has been reported to reduce the amputation rate associated with diabetes2,3. It is not certain whether or not a family history of a diabetes-related lower extremity amputation (LEA) poses additional risk to one’s own potential for an amputation. Nonetheless, memory of a family member’s amputation may contribute to an individual’s perceived risk and/or of developing complications, such as amputation. (What has been termed a multigenerational legacy of diabetes by Scollan-Koliopoulos, O’Connell, & Walker, [2005])4. Foot self-care behavior is a preventive action taken by individuals to minimize their risk of foot injury that can lead to infection and the possibility of amputation. According to Walker (2002), such preventive actions are more likely adopted when an individual perceives his or her own personal risk5. The purpose of this study was to assess how perceived risk of amputation and/or fear of an amputation influence one’s foot self-care behavior in a sample of older patients with diabetes and a family history of diabetes.

People with diabetes represent about 60% of nontraumatic lower-extremity amputation cases (82,000 in 2000–2001) in the United States. The risk of experiencing an amputation is by some estimates up to 40 times greater in those with diabetes as compared to those without diabetes. Peripheral vascular disease, the primary contributor to gangrene and amputation affects about 40% of patients within 20 years following diagnosis. Diabetic Neuropathy is a major contributor to the development of poor skin integrity and ulcerations2,3,6.

Those who receive diabetes education in foot care are more likely to practice foot care behaviors7. Yet, there is literature to support that knowledge of risk factors for illness development may not predict one’s own level of perceived risk for developing conditions. For example, Walker, Mertz, Kalten, & Flynn (2003), found that of 535 physicians without diabetes were surveyed. Those physicians at the highest actual risk of developing diabetes had the lowest levels of perceived risk for developing diabetes, representing an optimistic bias8. Decisions to engage in self-care behavior are made not only by what one knows, but what one expects, values about benefits and harms, certainty, how the opinions of others are perceived9, risk perception and emotional states10 and representations of illness (ie: fear)11 may factor into whether or not an individual decides to carry out foot care procedures. Eiser, Eiser, Riazi, Hammersley, & Tooke (2002) conducted a study that assessed how patients assimilate new information in relation to their prior beliefs and motives about diabetes. The investigators specifically looked at patients’ hopes and fears that are based on personal experience dealing with the consequences of diabetes. Conclusions included the notion that those who believe themselves to be at risk for complications, may not necessarily be ready to change their behavior or adhere to their regimens12.

A prerequisite to risk identification in oneself is an awareness of their personal experience of diabetes, emotional response to diabetes, and beliefs about prevention5. An individual’s witnessing of a family member’s experience with devastating complications is likely to result in emotional reactions (ie. fear) that may inhibit or facilitate self-care behavior. Lerner & Keltner (2001) proposed that emotion-related processes guide subsequent behavior and cognition in goal-directed ways13. Cognitively, risk and fear are two distinct constructs that may or may not operate together to influence preventive behavior.

THEORETICAL FOUDATION

According to Leventhal, Leventhal, & Cameron’s (2001) Model of Illness Representation (also known as common sense models of illness), a component of perceptual control theory, fear is an emotional representation of a threat. The theory posits that problem-solving components of the self-regulation process involve; (1) an individual’s view or representation of the status of a health problem, (2) an individual’s plans and tactics to control the threat of the health problem, and (3) an individual’s appraisal of the consequences of their efforts to cope with the problem. This process is driven by attributes of illness representation. Emotional representations of diabetes may present as perceptions of anger, sadness, hopelessness or depression11. According to Leventhal’s theory, illness stimuli stored in memory (ie: recollections a of a family member experiencing an amputation) and symptoms (ex: neuropathic pain) result in an emotional representations, which lead to coping strategies to deal with emotional reactions (ex: fear), which leads to appraisal of coping (ex: cognitive assessment of risk), which leads to emotional distress, which leads to illness outcomes11. The purpose of this study was to assess how perceived risk of amputation and/or fear of an amputation influence one’s foot self-care behavior in a sample of older patients with diabetes and a family history of diabetes.

Based on the preceding literature review the following hypotheses were tested using Leventhal’s construct of emotional representation (fear, sadness, anger, guilt) of illness:

  • Hypothesis (1) Patients with a recollection of a family member experiencing amputation will have a perception of risk of amputation that will be positively associated with foot self-care behavior.

  • Hypothesis (2) Patients with a recollection of a family member experiencing amputation will experience fear of amputation that will be positively associated with foot self-care behavior.

  • Hypothesis (3) Emotional representations of diabetes (fear, sadness, anger, guilt), perception of risk and experience of fear of amputation will be positively associated with foot self-care behavior in those with a family history of diabetes (those with and those without a family history of amputation).

RESEARCH DESIGN AND METHODS

Research Design and Sample/Setting

A cross-sectional descriptive design using purposive sampling was employed to recruit adult volunteers with type 2 diabetes who also had a self-reported family history of diabetes from an advanced practice nurse managed diabetes center in suburban Northern New Jersey. All of the participants had completed a self-management Education program. Participants in this study represented a sub-sample (n=70) of those from one site of a multi-site larger study reported elsewhere (Scollan-Koliopoulos, O’Connell, & Walker, 2006). The participants were selected based on having been mailed the foot self-care survey, not previously administered to other participants as part of the larger study.

Participants were recruited from a health promotion program mailing list that included those with type 1, type 2, gestational, and impaired glucose tolerance diagnoses. Volunteers were offered an incentive of a donation to the American Diabetes Association or the Juvenile Diabetes Research Foundation valued at $5, which was customary to the site. Paper-and-pencil surveys, informed consents forms, and health information portability and privacy releases were signed through the mail. The study was approved for the protection of human subjects by the Institutional Review Board of the University of Medicine and Dentistry of New Jersey and all data was de-identified.

Measures

Emotional Representation of Diabetes Scale

Data was collected using the emotional representation subscale from the Revised Illness Perception Questionnaire-Diabetes Version on the entire sample (N=70). The data is continuous with 5-point Likert term response sets, (strongly agree, agree, neither agree or disagree, disagree, strongly disagree). A high score denotes that more emotional representations are present (fear, sadness, anger, guilt) and low scores represent less fear, sadness, anger, and/or guilt. The survey was developed by Moss-Morris, Weinman, Petrie, et al. (2002) and the diabetes version was adapted by Skinner et al. (2003)14,15. The full survey has 38 items and constructs identified using principal components analysis (timeline, identity, controllability, consequences, and causes). Internal consistency reliability was evidenced by Cronbach’s alphas of .79–.89, with test-retest correlations were between .46–.88. The emotional representation subscale used in this study has been used in several studies16,17,18,19 for predicting medical outcomes and coping with chronic illness. The subscale represents single items for each perceived emotion. Questions included are as follows: “I get depressed when I think about my diabetes;” “When I think about my diabetes I get upset;” “My diabetes makes me feel angry;” “My diabetes does not worry me;” “Having diabetes makes me feel anxious;” and “My diabetes makes me feel afraid.”

Risk Perception and Fear Measure

Single items with a 4-point Likert scale assessing perceived risk of amputation and separate items for fear of amputation were administered to the entire sample (N=70) as part of a larger study. A high score denotes high perceived risk and/or high fear, and low scores denote slight perception and/or fear. The items were preceded by the stems: How would you rate your own risk of…” and “How afraid are you of getting a…”. Followed by a listing of all the complications due to diabetes, of which a lower-extremity amputation is included. The response sets included “Almost none,” “Slight,” “Moderate,” and “High.” Factor analysis of all of the items using orthogonal rotation and a forced factor solution on the two amputation items along with the other complications of diabetes (not reported on here) revealed loadings .89 for perceived risk and .96 for perceived fear as part of two separate latent variables. Thus the risk perception and fear should be used as single scales or items with confidence that there is no redundancy (ie. fear and risk are two separate constructs).

Foot self-care Measure

The foot self-care subscale of the Summary of Diabetes Self-care Measure by Toobert, Hampson, & Glasgow (2000) was provided to a sub-sample (N=47), of which there were N=45 forms with adequate completion for a composite score to be calculated. Some patients returning the form had an amputation or foot care problem that reduced their ability to engage in foot self-care and they were not included in the analysis. A composite score was developed by calculating the mean score of responses from a 5-item, 7-point scale of the number of days the foot care behavior was performed. High scores mean more self–care occurs (perhaps 5–7) throughout the week and low scores mean that less foot self-care occurs (perhaps 0–2 days). One item inquiring about foot soaking is reverse-scored to indicate it is not a positive self-care behavior. The survey is the most widely used self-care measure for assessing diabetes regimen adherence (including other outcomes such as diet, physical activity, medication, insulin, and monitoring). Generally, the survey measures levels self-reported self-care behavior over the proceeding seven days that a subject was feeling well. The inter-item correlations for the foot self-care items is reported to be .29 with test-retest values of .5920. Self-care surveys are known to yield lower internal consistencies than other constructs because the act of self-report of self-care behavior is an inconsistent process to begin with and tends to be variable.

Demographic Questionnaire

Participants were asked questions about their demographic characteristics as well as what complications they have currently, including if they have needed an amputation or have loss of feeling or pain to assess neuropathy.

Data Analysis

GPOWER was used to estimate that the sample would provide 80% power to detect medium effects of perceived, risk, fear, and emotional representations on foot self-care behavior by calculating correlations and building regression models with up to three predictors at an alpha of .0521. All of the analyses were conducted using SPSS version 12.022. The data was assessed for normality prior to conducting regression analyses and the data did not appear to need to be transformed to conform to parametric assumptions. Sample sizes for some of the analyses are limited for several reasons (ie: casewise deletion, only portions of the entire sample received the foot-care survey as part of this pilot sub-study, and missing data, splitting the sample by those with and without a family history of amputation for some hypotheses).

RESULTS

Descriptive Statistics

Seventy volunteers were recruited from the larger study (that included 123 volunteers), of which only 45 returned the foot self-care survey. Of the full sample recruited (N=70), 61% (n=42) were over the age of 60. The demographic characteristics of the sample can be seen in Table 1; 53% female (n=37); 44% male (n=31); 5.9% Hispanic ethnicity (n=4); 90% non-Hispanic ethnicity (n=61); 20% Black race (n=14); 70% White race (n=48); 4% Asian race (n=3); and 4% more than one race (n=3) (values do not equal 100 due to missing responses on de-identified forms). Most of the participants were born in the United States (81%, n=56). The participants were from a higher socioeconomic status, with 30% (n=20) reporting an annual income over $70,000 and only 10% (n=7) reporting below $30,000. Less than 27% (n=18) of participants did not complete a high school education and 70% (n=48) completed some or graduated a 4-year college. In this sample, 18% (n=12) of the participants reported having the complication neuropathy and none of the participants reported having a LEA themselves. Table 2? depicts characteristics of those completing the foot care survey sorted by family history of an amputation.

Table 1.

Descriptive characteristics of those reporting foot self-care behavior (N=47) sorted by Family History of Amputation (n= 8).

Characteristic History No History (N(%))
Gender
 Female 2 (25) 17 (50)
 Male 4 (50) 15 (44)
Ethnicity
 Non-Hispanic 8 (100) 32 (94)
 Do Not Wish to Answer 0   1 (2)
Race
 Black 1 (12)   3 (9)
  White 7 (87) 27 (79)
 Asian 0   3 (9)
 More than One Race 0   1 (3)
Born in USA 4 (80) 28 (82)
Foreign Born 1 (20)   6 (17)
Family Member Remembered
   Mother 4 (80) 18 (53)
   Father 0   9 (26)
   Grandmother 1 (20)   4 (12)
   Grandfather 1 (20)   2 (6)
   Aunt 1 (20)   5 (15)
   Uncle 2 (40)   5 (15)
   Older Sibling 1 (20) 14 (41)
   Cousin 1 (20)   5 (15)
Family member still living 0 13 (38)
Lived with family member 4 (80) 20 (59)
Family had diabetes education 0   8 (23)
Anticipate same complications
   “Yes” 0   7 (21)
   “No” 1 (20) 16 (47)
   “Unsure” 4 (80) 10 (29)
Participant Age Diabetes Onset
   21–40 1 (20)   2 (8)
   41–60 4 (80) 15 (44)
   61–70 5 (15)
   71–80 2 (6)
Participant Income Level
  $20–29,000 1 (3)
  $30–49,000 1 (20)   5 (15)
  >$70,000 2 (40) 16 (47)
Participant Education Completed
  High School 4 (80) 15 (44)
  College 1 (20) 19 (56)

Not all responses equal 100% due to missing data and other categories not reported here.

Table 2.

Description of Foot Self-care Behavior Responses of those with a family history of amputation (N=9).

Behavior Number of days in past week (%(N).
0 1 2 3 4 5 6 7
Checked feet 20 (1) 0 (0) 0 (0) 40 (3) 0(0) 20 (1) 0 (0) 20 (1)
Washed feet 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 40 (2) 60 (3)
Soaked feet 100 (5) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0)
Dried between toes.
0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 20 (1) 20 (1) 60 (3)
Inspect shoes.
80 (4) 20 (1) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0) 0 (0)

Foot Self-care Behavior

The frequency of responses to the foot self-care behavior items can be found in table 2. Not all of the questions were answered completely or participants selected two responses (ie. 3 and 4 days) and although a foot self-care score could be calculated for the other items, these individuals are not represented in the tables. The findings imply that participants in this sample spent the least amount of their foot self-care time on soaking their feet (considered to be a negative self-care behavior) and inspecting the inside of their shoes (considered to be a positive self-care behavior). The items in the Summary of Diabetes Self-care Activities Survey are items that are most often emphasized by diabetes educators.

The internal consistency reliability of the foot self-care items was alpha = .50 for this sample. Educators are encouraged to tailor foot care education based on individual patient’s risks23. Therefore, variability in foot care behavior is expected. Currently, daily manual or visual foot assessment is recommended for individuals with neuropathy. For example, the inter-item correlation matrix revealed that the self-care behavior checking feet was correlated most highly with washing one’s feet (r=.27, n=45). Thus, those who wash their feet more often are also inspecting their feet. It is possible that those who experience discomfort from neuropathy may avoid washing their feet on a daily basis. Results of the Hypotheses Tests.

Hypothesis (1) Patients with a recollection of a family member experiencing amputation will have a perception of risk of amputation that will be positively associated with foot self-care behavior. In the group with a family history of an amputation (n=5), the relationship between fear and foot self-care behavior was strongly negative and significant (r=−.99; N=5, p<.01). Those who engage in more foot self-care behavior report less fear of an amputation. Those who engage in less foot self-care behavior report more fear of an amputation. Thus, in the presence of fear, individuals engage in less foot care behavior.

Hypothesis (2) Patients with a recollection of a family member experiencing amputation will experience fear of amputation that will be positively associated with foot self-care behavior. The relationship between risk perception and foot self-care behavior was weakly negative and nonsignificant (r=−.23; N=5, NS). Those who engage in more foot self-care perceive less risk of an amputation. Those who engage in less foot self-care behavior perceive more risk of an amputation. Thus, individuals are aware that not performing foot self-care increases their risk for an amputation. Table 3 displays the correlations between risk perception, fear, and foot self-care behavior in those with no family history of diabetes.

Table 3.

Correlation matrix of relationships of perceived risk and fear of amputation with foot self-care behavior of those with a family history of amputation (N=5).

Foot-care 1 −.23* −.99 *
Amputation Risk −.23* 1 .34
Amputation Fear −.99* .34 1
*

p<.01

Hypothesis (3) Affirmation of fear and/or perceived risk of amputation will be positively associated with foot self-care behavior in those with no family history of amputation. In those with no family history of amputation (n=25), both fear (r=.89; N=25, p<.01) and risk perception (r=.61; N=25, p<.01) are strongly and positively associated with foot self-care behavior. Thus, those who fear an amputation and who perceive they are at risk for an amputation engage in more self-foot-care behavior. Those with no perceived risk or fear of an amputation are less likely to engage in foot self-care behavior.

The correlation matrix of relationships of risk perception and fear with foot self-care behavior for the sub-sample with out a family member having an amputation can be found in table 4. Only those who answered each and every question completely and accurately (ie. one response only) are represented in the table.

Table 4.

Correlation matrix of relationships of perceived risk and fear of amputation with foot self-care behavior of those without a family history of amputation (N=25).

Foot-care Amputation Risk Amputation Fear
Foot-care    1 .61* .89 *
Amputation Risk .61*    1 .70*
Amputation Fear .89* .70*    1
*

p<.01

Hypothesis (4) Emotional representations of diabetes (fear, sadness, anger, guilt), perception of risk and experience of fear of amputation will be positively associated with foot self-care behavior in those with a family history of diabetes (those with and those without a family history of amputation). A regression model incorporating the independent variables (emotional representation of diabetes, perceived risk of amputation, and fear of an amputation) was built by entering the variables together in one-step to explain the variance in foot self-care behavior (dependent variable). Results of the regression analyses can be found in table 5. Perceived risk of an amputation was weakly and negatively associated with foot self-care behavior (β=−.01, NS). Fear of an amputation was strongly and positively associated with foot self-care behavior and contributed unique variance (β =.90, p=<.001) in explaining foot self-care behavior. Emotional representations of diabetes was weakly and positively able to explain variation in foot self-care behavior (β = .14, p=<.05). Thus, those with more emotional representations of diabetes (sadness, fear, anger, guilt) are more likely to engage foot-self-care behavior. For this sample without accounting for a memory of an amputation in a family member, foot self-care behavior appears to be mostly based in response to one’s fear of an amputation. Feeling sad, fearful, angry, and guilty about having diabetes in general plays a small role in whether or not one engages in routine foot care. A specific fear of an amputation is the motivator. Risk perception, or one’s beliefs in his/or her chances of an amputation does contributes a very small role and only in combination with stronger predictors such as fear and emotional reactions to having diabetes.

Table 5.

Predictors of foot self-care (N=45)

Variable B SE B β R2 significance
Emotional Representation 9.15 4.5   .14* .81 >.0001
Risk of Amputation −.02   .15 −.01
Fear of Amputation 1.99   .21 .90**
*

=p<.05;

**

p<.001

An additional exploratory analysis was completed by dividing the sample into two groups (those with and without a family history of an amputation). A regression model was built to test the same hypothesis on the two groups separately using regression analysis. For both groups, fear continued to be very strongly association with foot self-care, but the direction of the relationship differed by group. For the group with a family history of an amputation (R2= .99, p=.01, Risk B=−.13, Fear B=−1*), fear was negatively associated with foot self-care. More fear results in less foot self-care behavior. This may indicate that more foot self-care behavior results in less feelings of fear. In other words foot self-care provides a sense of controllability perhaps, and the individual becomes less fearful regarding future negative outcomes.

For the group with no family history of amputation (R2= .79, p<.01, Risk B=−.023, Fear B=.90*) fear was positively related to foot self-care. This indicates that fear of an amputation results in routine foot self-care behavior.

DISCUSSION

There are cognitive differences between the constructs of fear and risk. Fear is an emotional reaction to a threat, whereas risk is an individual’s perception of personal vulnerability of a threat or the chances of developing a complication. Eiser, Eiser, Riazi, Hammersley, & Tooke (2002) propose that providing patients with warnings about complications as a means of persuading them to feel the need to carry out self-management behaviors may create tension when attempting to convey hope of reasonable health12. This is especially relevant for those with a legacy of diabetes who may feel vulnerable under the assumption of a hereditary predisposition. In this sample those with a family history of an amputation make self-care choices in the context of fear of the complication, yet their perceived risk level is more likely to be associated with the degree to which they engage in foot self-care. More fear is associated with less foot self-care and less fear is associated with more self-care. Those taking care of their feet may feel less fear because they feel they are taking measures to prevent the consequence. Those who are less likely to perform routine foot self-care may experience high levels of fear based on their sense of vulnerability and lack of action.

For those with a family history of amputation, perceptions of intense fear of getting foot complications might result in feeling overwhelmed with self-care behavior24. In this scenario emotional responses may operate independent of risk perception. Family history of diabetes-related poor outcomes is known to contribute to intense fear24. For example, Walter & Emery (2005) found individuals are able to describe in a detailed way the emotional effects of witnessing a family member’s experience with illness25. Anger, another emotional representation of diabetes can result in an individual developing a “who cares” attitude and an increase in risk-taking behavior24. This is supported by Lawton, Connor, & Parker (2007) who hypothesize that there is often incongruence between one’s cognitions and behavior that can be explained by affect26. The survey items assessing emotional representations assessed here superficially address indicators of depression (sadness), a known contributor of poor coping and outcomes24, 27.

Some patients frame their own risk of a disease based on whether or not it runs in the family bloodline. Patients are increasingly aware of informational risk based on genetic testing of hereditary illness, such as breast cancer. There is a range of sophistication in interpretation of informational risk, since the information is typically presented as one’s vulnerability of developing an aliment based on what is known of genetic mutations associated with certain conditions28. Those who attribute heredity as a major cause of their diabetes might be certain that diabetes is supposed to result in the same consequences as the family member they remember the most, which may result in emotional reactions and influence perceived risk. Risk perception may vary depending upon the actions one takes or the ways in which one compares him/herself to a family member who had the same complication. Based on similar characteristics, strength and frequency of memories, or some complications being seen with higher frequency in a family, may frame subjective risk.

Individuals need to balance the emotional reactions to diabetes complications with perceived risk as they make self-care choices. The purpose of this study was to examine how the constructs fear and risk and the emotional reaction of having diabetes relate to one another in a sample that exclusively had a family history of diabetes and/or remember the family member needing an amputation, a devastating complication. If information is presented that contradicts what they know from the family, confusion might result and this confusion may influence control perceptions or avoidance of new information24, 29. For example, if an individual recalls a high frequency of amputations in the family, telling a patient that they can reduce their chances with foot-self-care and prevention may not be effective if an individual witnessed family members taking good care of their feet, yet they still need an amputation. Such an individual might be convinced that foot care does not work, expect to need an amputation one day and avoid foot-care prevention. For example, expectancy of outcome (good or bad), not studied here was a better predictor of distress in a breast cancer study than perceptions of controllability30. Lerner & Keltner (2001) established the notion that individuals with a fearful disposition tend to be more pessimistic, which influences their perception of risk13. On the converse, individuals who tend to have an angry disposition, tend to be more optimistic in their perception of risk. Fear is more likely in the presence of situational control and uncertainty, whereas anger is more relevant to situations of individual control and certainty13. Thus those who experience fear of an amputation may be both uncertain about their risk for an amputation and believe they have situational control over their risk, facilitating self-care behavior.

Finally, some participants (n=12) reporting having neuropathy, a symptoms-based diagnosis, it is possible that symptoms of neuropathy drive foot self-care interventions31. More illness stimuli, such as symptoms lead to stronger emotional representations11, possibly resulting in more foot care.

Limitations

The findings are not generalizable to those of a minority race/ethnicity or those of lower socioeconomic status, the very groups that are more frequently affected by amputation. The foot self-care survey was mailed separate from the other surveys to a subsample as part of a larger study and was not planned as part of the original study. Thus the response rate was poor. Although, the sample size was limited for those with a family history of an amputation, and there was a wide discrepancy (unequal groups) between those with and without a family history of amputation, there was adequate variability in the foot care behaviors to assume reliability of the scores. An exploratory analysis to identify contributors of variance in foot care was conducted in order to guide future study proposals. Parametric methods (ie: regression analysis) on small samples require caution when drawing inferences. The response rate was low for several reasons including: this being the first time a research study ever commenced at this site, the recruitment was based on a health education promotion list, and a very small incentive was offered. There was a possible limitation in range, since single items, as opposed to a Likert scale were used to measure perceived risk and fear of amputation. Future studies should utilize a measure that taps the multitude of symptoms experienced with neuropathy and the ways in which it drives behavior.

CONCLUSION

Emotional representations (fear, sadness, anger, guilt) are associated with foot self-care behavior. The more emotion one affirms, the more likely they are to adhere to foot self-care recommendations. The more perceived risk of an amputation without an emotional response, the less likely they are to adhere to foot self-care recommendations.

Consistent with the findings of others26, 10, beneficial behavioral intentions relate positively to a perceived emotion whereas potentially harmful behavioral intentions relate positively to perceived risk. Providers may gain insight into the chances of one carrying-out foot self-care recommendations by assessing one’s affective response to the possibility of complications. Experts increasingly deter clinicians from using scare tactics to drive behavioral change32. However, the findings of this analysis demonstrate that one’s own emotion of fear may drive behavior. This does not suggest that one should scare a patient into change, but rather explore what inherent emotions may drive one’s behavioral choice. Clinicians may find it useful to inquire about the complications a family member experienced, extending the interview beyond the inquiry of family history of diabetes. Probing about family member’s complications may provide an opening for patients to disclose fears of complications development, providing insight to self-care choices.

Those who affirm emotional representations (fear, sadness, anger, guilt) and high perceived risk about the prospect of experiencing an amputation are less likely to engage in foot self-care behavior. Perhaps in the presence of feeling vulnerable, fear can paralyze one from engaging in self-care. Providers can spend time addressing patient’s fears and risk perception when assessing their intention and likelihood of carrying out recommended foot self-care behaviors. Effective risk communication is a process that can be facilitated by adopting an approach that incorporates patients’ ideas, feelings, and concerns33.

Acknowledgments

This study was funded in part by Sigma Theta Tau, The International Honor Society for Nursing and NIH grant DK20541. The author would like to acknowledge and thank Kathleen O’Connell, PhD, RN, FAAN of the Department of Health Behavior Studies, at Teachers College, Columbia University, New York and Sharon Guadagno, MSN, RN, CDE, and Kathy Tigue, Rd, CDE of Diabetes Management Services, LLC, New Jersey for their support of this study.

Contributor Information

Melissa Scollan-Koliopoulos, Assistant Professor of Medicine at the University of Medicine and Dentistry of New Jersey Medical School, Division of Endocrinology, Newark, New Jersey.

Elizabeth A. Walker, Professor of Medicine and Epidemiology and Population Health, Division of Endocrinology and Director of the Prevention and Control Core of the Diabetes Research and Training Center at Albert Einstein College of Medicine, Bronx, New York.

David Bleich, Associate Professor of Medicine and Division Chief of Endocrinolgy, Metabolism, and Diabetes at the University of Medicine and Dentistry of New Jersey Medical School, Newark, New Jersey.

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