Talking About Type 2 Diabetes

Abstract

Purpose

The purpose of this study was to describe type 2 diabetes (T2DM) communication and risk reduction recommendations from the perspective of family members at risk for T2DM based on family history.

Methods

Semistructured qualitative interviews were conducted with 33 individuals with a first-degree relative with T2DM. Participants were recruited from the community and a previous pharmacogenetics study. Deductive and inductive codes were applied to the transcripts.

Results

Conversations with family members with and without T2DM focused on symptoms and disease management of the family member with T2DM. With at-risk relatives, conversations also focused on prevention. Lack of perceived relevance to family members without T2DM was a barrier to communication. Recommendations to facilitate communication included education of an at-risk family member to increase awareness of risk, followed by sharing of learned information with others.

Conclusion

Efforts are needed to increase awareness and improve communication about T2DM risk factors, familial risk, and risk reduction behaviors within families with a family history of T2DM. Family members with and without T2DM should be encouraged to communicate with their relatives about T2DM and the risk to family members. Identification of family members who can facilitate communication, education, and modeling of healthy behaviors may increase awareness and motivate at-risk individuals to engage in risk-reducing behaviors.

Type 2 diabetes (T2DM) is the seventh-leading cause of death in the United States. Risk factors for T2DM include age, obesity, gestational diabetes, impaired glucose metabolism, physical inactivity, and race/ethnicity.^1–3 Family history (FH) of T2DM is also a risk factor, particularly if T2DM is diagnosed in a first-degree relative (FDR).^4–7

Although awareness of one’s FH as a risk factor can have a positive impact on risk-reducing behaviors,^8,9 not everyone at risk recognizes FH as a risk factor for T2DM.¹⁰ Despite the known association between FH and T2DM, it is not clear how to best encourage families to discuss T2DM risk.¹¹ Families differ in their willingness to communicate about personal health information.^12–14 Research suggests that people with T2DM are more likely to share health information with family if they perceive their disease to be severe or if they perceive other family members to be at risk,¹² but they are less likely to communicate about risk-reducing behaviors if they are not undertaking the behaviors themselves.¹³ Both the sharing of health information and the avoidance of communicating it with family members, whether intentional or not, can be forms of social influence, which may affect health behavior.^15,16

Social influence theory suggests that interactions centered on health will influence people to compare their health behaviors with those of others or with social norms and potentially alter their behaviors in response.^16–18 Influence processes tend to occur within social groups, often leveraging social identity and roles. Families represent an ideal context for considering social influence processes: Not only do families develop behavioral norms, but direct influence might be employed based on family roles. Thus, increasing communication about T2DM within the family in an effort to reach at-risk people might improve interventions aimed at reducing T2DM risk. However, little is known regarding how best to increase communication about T2DM within families. To address this gap, a qualitative descriptive approach¹⁹ was chosen to better understand and describe T2DM communication from the perspective of family members at risk for T2DM based on FH and to gain insight into interventions that may increase communication about T2DM in this at-risk population. The aim of qualitative description is to provide a rich but straight description of an experience or event.²⁰ To better understand the context in which familial communication occurs, participants were also asked about their experiences with T2DM as well as their perceptions about familial risk and causes of T2DM.

Methods

Semistructured qualitative telephone interviews were conducted with adults with a FH of T2D in a FDR. A qualitative descriptive approach guided the research to better understand the participants’ perceptions of communication and risk. Institutional Review Board approval was obtained from the University of Cincinnati.

Participants

Participants in the qualitative interviews were a subset of the sample from a study on families at risk of T2DM based on FH. The prior study utilized social network methods to understand the role of the family network system on (1) communication of risk information and (2) engagement in risk-reducing behaviors. Participants were adult at-risk siblings or children of individuals with T2DM, further referred to as FDRs. Siblings of someone with T2DM were classified as same generation (SG) participants, and children were classified as younger generation (YG) participants.

Participants were recruited through (1) individuals with a known T2DM diagnosis who previously participated in a pharmacogenetic study or (2) advertising to the community via a booklet, a social media posting, or tear-off flyer pads. The advertising booklet with information about the study was distributed to 1500 families who previously indicated an interest in being contacted about research at Cincinnati Children’s Hospital Medical Center (CCHMC). The study was also advertised through 2 CCHMC Facebook pages, and study fliers were posted in locations throughout CCHMC’s main and satellite facilities.

Data Collection

Development of the qualitative interview guide was informed by a previous study that examined risk communication about colorectal cancer.²¹ The initial guide was piloted with 3 colleagues who had a parent or sibling with T2DM, and revisions were made to increase reliability and comprehension.

Demographic questions, including height and weight, were collected during an initial eligibility phone call. During the qualitative interview, participants were asked about their experience with T2DM, with whom participants did or did not communicate about T2DM, what was discussed, any challenges the participants experienced when discussing T2DM with family members, and their perceptions about the cause of T2DM in their families. Risk perception was assessed by evaluating who participants thought was at risk of T2DM in their families and whether they felt personally at risk of developing T2DM and why. Finally, participants were asked what could be done to increase communication about T2DM within their families and what could be done to reduce the risk of family members or themselves developing T2DM.

Three graduate students were trained to conduct the qualitative interviews. Training involved attending lectures on qualitative research and practicing interviews with the first and last authors. The first author has experience with qualitative research and listened to the first interview conducted by each interviewer, providing feedback afterward. All interviews were audiotaped and transcribed by a third party. Interviews lasted from 15 to 35 minutes.

Data Analysis

Qualitative content analysis was conducted with a modifiable coding scheme.¹⁹ Deductive codes were developed before analysis on the basis of an interview guide.²² Three authors (M.F.M., S.L.F., J.L.H.) read all the transcripts to identify patterns in the data related to participants’ experiences with and communication about T2DM and discussed insights about the data during bimonthly meetings. Inductive codes were created as patterns emerged from the data. The coding guide was updated throughout the project, and previously analyzed transcripts were reanalyzed to ensure standard application of all codes. The principle coder (S.L.F.) analyzed all transcripts, and a second coder (J.L.H.) analyzed 14 (40%) randomly selected transcripts: 7 from the SG and 7 from the YG. Cohen kappa was calculated with NVivo for all codes applied, and κ values <0.7 were considered to be in disagreement. Disagreements were discussed between coders until consensus was reached about the correct application of the code. Frequency counts reflect the number of participants identified as describing the phenomenon or event.

Results

Results were organized into 3 overarching categories: reactions to T2DM, perceptions about T2DM cause and familial risk, and communication about T2DM. The first 2 categories shaped participants attitudes and beliefs toward T2DM, both of which influenced participants’ communication patterns.

Participant Characteristics

Thirty-three at-risk FDRs from 22 families were interviewed. One family contributed 3 participants; 7 families contributed 2; and 14 families contributed 1. Eleven participants were recruited through the pharmacogenetic study and 22 from community advertisements.

The majority of participants were women and self-identified as Caucasian. SG participants tended to be older than YG participants. The mean body mass index of SG participants was in the overweight category, and that of the YG was in the obese category (Table 1). A majority of participants had ≥2 family members with T2DM (SG = 10, YG = 15).

Table 1.

Participant Characteristics

	SG (n = 15)	YG (n = 18)	Total (n = 33)
Mean age, y	49.5	37.8
Mean body mass index	29.9	32.6
	No. (%)	No. (%)	No. (%)
Age, y
20–39	5 (33)	11 (61)	16 (49)
40–59	6 (40)	7 (39)	13 (39)
60–79	4 (27)	0 (0)	4 (12)
Body mass index
20–24.9 (healthy weight)	4 (27)	4 (22)	8 (24)
25–29.9 (overweight)	4 (27)	3 (17)	7 (21)
30–44.5 (obese)	7 (47)	11(61)	18 (54)
Sex
Male	4 (27)	2 (11)	6 (18)
Female	11 (73)	16 (89)	27 (82)
Race/ethnicity
White/Caucasian	9 (60)	12 (67)	21 (64)
Black/African American	4 (27)	6 (33)	10 (30)
Asian	2 (13)	0 (0)	2 (6)
Family history
No. of FDRsa with T2DM
1	5 (33)	15 (83)	20 (61)
2	5 (33)	3 (17)	8 (24)
≥3	5 (33)	0 (0)	5 (15)
No. of SDRsb with T2DM
0	7 (47)	4 (22)	11 (33)
1 or 2	5 (33)	9 (50)	14 (43)
≥3	3 (20)	5 (28)	8 (24)
Marital status
Married	10 (67)	9 (50)	19 (58)
Single, never married	4 (27)	6 (33)	10 (30)
Single, divorced	1 (7)	3 (17)	4 (12)
Education
High school (did not complete)	1 (7)	0 (0)	1 (3)
High school graduate	0 (0)	3 (17)	3 (9)
Some college/associate’s degree	7 (47)	9 (50)	16 (48)
Bachelor’s degree	6 (40)	4 (22)	10 (30)
Graduate degree	1 (7)	2 (11)	3 (9)
Annual income
≤$25 000	2 (13)	5 (28)	7 (21)
$25 001-$50 000	3 (20)	4 (22)	7 (21)
$50 001-$75 000	7 (47)	2 (11)	9 (27)
$75 001-$100 000	1 (7)	3 (17)	4 (12)
>$100 000	2 (13)	3 (17)	5 (15)
No answer/refused	0 (0)	1 (6)	1 (3)

Abbreviations: FDR, first-degree relative; SDRs, second-degree relatives; SG, same generation; T2DM, type 2 diabetes; YG, younger generation.

^aFDRs include parents, siblings, and children.

^bSDRs include grandparents, grandchildren, uncles, aunts, nephews, and nieces.

Reactions to T2DM

When asked about their experience with T2DM, participants frequently began by describing who in their family had T2DM, followed by observations of that person’s management of T2DM, such as efforts to follow a diet plan, the use of medications or injections, the monitoring of blood sugar levels, or medical complications (eg, renal failure, neuropathy, amputations). These experiences shaped the participants’ emotional and cognitive reactions to T2DM. A majority of participants (SG = 12, YG = 13) had negative associations with T2DM, calling it a “serious” or “terrible” disease. “Scary” was a term used by more than one-third of participants.

Some used this term to describe the medical consequences that can result from T2DM or that were experienced by a relative with T2DM: “He actually ended up being like in a … diabetic coma … that was one thing that I know was very scary. I mean, to think about what diabetes can do” (SG, woman, 65 years). Others expressed fear about a perceived lack of control over the progression of the disease: “Just how terrible it is and there ain’t no cure for it really and it seems like it’s going to progress no matter what you do” (SG, man, 42 years). Still others were worried about the risk of T2DM for their children or themselves,

Well it’s kind of scary because my dad has it and we have gotten a lot of our genes from him. Me and my sister, we both feel like we’re in danger of actually getting diabetes. So I mean I try to eat better but like I said it is scary when I think about it because like my feet they swell up a little bit sometimes and then it has me thinking like am I going to get diabetes.

(YG, woman, 31 years)

Although many participants felt that T2DM was controllable—”OK, it’s a serious thing, diabetes … but luckily it’s treatable, you know, to where you can control it and manage it” (SG, woman, 33 years)—nearly all participants indicated that they wanted to avoid getting T2DM as a result of observing the impact of the disease on their relatives with T2DM. Many indicated a desire to change their behavior in an effort to prevent T2DM. However, fewer indicated that they had moved to action:

Well, it’s definitely made me want to eat healthier, exercise, watching my weight. You know, actually I’m trying to lose weight. And basically just being a lot more aware of my stress levels and things like that and I’ve been going to the doctor you know annually, making sure that I do not have it.

(SG, woman, 36 years)

A few voiced feelings of hopelessness, that the disease was inevitable regardless of their efforts to change their lifestyle: “Yes, like I’m afraid—like because I am heavy-weighted and I do try to eat right and everything but it runs in my family so it’s like I feel like even though I do what’s right, eventually I’m going to get it too” (YG, woman, 21 years).

One participant succinctly summarized the possible reactions to the fear surrounding T2DM and the desire to avoid developing it:

I’m afraid of it. I’m afraid of it for many reasons. I’m afraid of it because I don’t care how much I read about it, I still don’t understand the whole insulin not producing, islets of Langerhans. I’m still like, I still don’t get it. Whatever it is, I don’t want it. I just don’t want it. And fear can paralyze a lot of people. I think fear paralyzed me to get up and do something. Or it’s the opposite. Fear can make you just stand there and say, “I don’t know what to do.” And don’t do anything, which is just as bad.

(SG, woman, 50 years)

Perceptions of Cause and Risk

Most participants provided >1 perceived cause or risk factor, suggesting a multifactorial understanding of cause and risk (SG = 15, YG = 16). The most commonly stated combination of factors was diet and FH, although many combinations of risk factors existed.

When participants were asked what they thought was the cause of diabetes in the family, the most common answers were poor diet, being overweight, and genetics or FH of T2DM (Table 2). When asked about who in their family was at risk for T2DM, participants most commonly cited themselves as being at risk (SG = 10, YG = 15), followed by their siblings (SG = 2, YG = 10). When asked why the stated individuals, including themselves, were at risk, the same participants often provided responses different from what they gave for the cause of T2DM. While there was a diversity of potential causal factors provided for family members, the most common answers were again diet, overweight, and FH (Table 3).

Table 2.

Perceptions of Cause of T2DM in the Family

Perceived Cause	Example	SG (n = 15)	YG (n = 18)
Poor diet	“I know my mother didn’t really follow a good diet and I think that’s a lot of it.”	10	12
Overweight	“There is quite a bit of obesity in my family so … I know that’s a contributing risk factor.”	8	11
Genetics/family history	“I think there’s always a genetic factor that goes into that.”	6	12
Lack of exercise	“Anybody in your family can get it especially if you’ve got a bad diet and don’t get enough exercise.”	3	4
Uncertain of role of genetics	“Most people say it’s inherited so … but I don’t know if it’s true or not.”	4	2
Age	“I think age kind of contributes too eventually.”	1	2
Stress	“It could be a combination of factors you know, maybe the lifestyle of stress, the way that they process information and continue high stress environments, even when it’s not stressful [laughs]. They make it stressful.”	1	1
Don’t go to doctor	“just overall, you know, just not being tactful about going to the doctor regularly because of economic issues.”	1	0
Gestational diabetes causes T2DM in child	“If you like say—if my mom, like if my mom say for instance, if she was pregnant and she’s a diabetic there’s a chance that the child, like, might have developed diabetes too.”	0	1
Giving birth to large babies	“I had a couple babies that weighed more than 9 pounds. … I know that is a factor.”	0	1
Pancreas not functioning	“It’s probably—and I know it’s ‘cause his pancreas isn’t working right.”	0	1
Smoking	“Smoking, just that overall nonhealthy choices that you’re making.”	0	1
Don’t know	“I really don’t know. I really never thought about it, I was just thankful that I didn’t have it and just hoping that they could get over it.”	3	0

Abbreviations: SG, same generation; T2DM, type 2 diabetes; YG, younger generation.

Table 3.

Perceptions of Risk: Reasons Why Stated Family Member Is at Risk

Reason	Example	SG (n = 15)	YG (n = 18)
Genetics/family history	“I definitely think I am I feel like because of my weight and because of my family history. And then, you know, probably I mean my kids probably are just from family history.”	6	13
Overweight	“Maybe my youngest daughter, maybe. And I say that because she’s a little overweight I think. But I think if that has anything to do with it, I mean I guess that can be a factor but other than that just the weight problem.”	7	11
Poor diet	“I think they’re conscientious of trying to help her [granddaughter] but in the long run she still eats quite the wrong type of food a lot and too much food.”	5	10
Lack of exercise	“Well she’s [sister]—she’s very busy but she’s not necessarily physically active, which is two different things.”	3	5
Uncertain of role of genetics	“Yeah, because it seems like it’s hereditary. I could be wrong”	4	1
Currently experiencing symptoms	“I mean I try to eat better but like I said it is scary when I think about it because like my feet they swell up a little bit sometimes and then it has me thinking like am I going to get diabetes.”	2	3
Race or ethnicity	“Well, it’s just like I’ve heard that it’s more African Americans have diabetes than it does for people of different races.”	1	2
Age	“Because I’m—because I’m 58 years old.”	1	1
Other	“But she [sister] thinks she’s taking care of herself but she’s not. … She tries to go homeopathic as much as possible.”	1	0

Abbreviation: SG, same generation; YG, younger generation.

Participants were not explicitly asked who in the family was not at risk, but of those who brought it up, 8 felt that they were not at risk (SG = 5, YG = 3). The most common reasons provided regarding why someone in the family was not at risk were healthy lifestyle (SG = 4, YG = 5) and no symptoms of T2DM (SG = 2, YG = 2).

Communication

Communication Topics

Conversations between the FDR and the relative with T2DM, as well as other family members without T2DM, most often focused on management of the disease through diet and medications, including the symptoms that the relative with T2DM was currently experiencing (SG = 10, YG = 14). “I mainly talked about how often they [family members with T2DM] have to take it and what quantity of insulin they have to take. And how they’re going to watch it with their diet” (SG, man, 77 years).

Prevention was the most common topic of conversation with at-risk relatives (SG = 2, YG = 10), with diet more frequently discussed than exercise as a means of prevention:

I talk to my children.… My one son, he lives on carbohydrates … and I always am telling him, “You really need to watch your carbohydrates, because you’re gonna end up with diabetes if you don’t watch it.” I don’t know if that’s true, but that’s what I tell him.

(YG, woman, 52 years)

Only 2 participants specifically indicated that they discussed the role of FH with at-risk family members:

I just talk to them [participant’s children] about prevention, you know. Making sure that they continue to work out, eat right, you know watch their carbs, and just being aware.… Letting them know, “Hey you are prone to this, it’s something that runs in the family, and because of this you have to be more careful.”

(YG, woman, 41 years)

Barriers to Communication

The most commonly mentioned barrier to communication was that conversations about T2DM were not relevant to family members without T2DM. Lack of perceived risk of developing T2DM (either by the participant or by other family members) was the most common reason why participants felt that conversations about T2DM were not relevant, and it impeded their initiating and participating in conversations about T2DM. Young age of children, perceived apathy by other relatives, and disinterest about T2DM were other reasons. One participant indicated that she spoke only with family members with T2DM. When asked why she did not communicate with her at-risk relatives, she explained, “I don’t think they really pay attention or care to really discuss it. It’s kind of one of these diseases that people just don’t pay attention to until they’ve got it.” (YG, woman, 38 years).

Some participants indicated that conversations about T2DM were not a priority for themselves or their family members without T2DM or that the topic had been exhausted. A few of these participants said that a significant event (eg, worsening of symptoms or a new diagnosis) would bring T2DM back to the forefront of conversations. Several YG participants simply said that T2DM was not a topic that came up in conversation, but they did not or could not articulate why.

A few participants intentionally avoided conversations, whereas others mentioned physical and emotional distance as communication barriers. Some did not communicate about T2DM with relatives who lived far away; however, others focused on emotional distance and did not communicate with relatives with whom they did not have a close bond (Table 4).

Table 4.

Barriers to Communication: Reasons Why Type 2 Diabetes Is Not Discussed

Reason	Example	SG (n = 15)	YG (n = 18)
	Not relevant
Lack of perceived risk	“I think the people that took care of it took it seriously and wanted to make sure that they stayed on top of it and tested their blood and did what they should. And other people, I think, relied of medications that they took to do all the work.”	8	7
Young age of unaffected relatives	“Well mainly it’s my kids is more of a challenge. I don’t think they understand the significance of it.”	1	3
Lack of interest	“I don’t think they really pay attention or care to really discuss it. It’s kind of one of those diseases that people just don’t pay attention to until they’ve got it.”	2	1
	Not a priority
Other health concerns	“I really haven’t discussed it. … She’s got some other problems. … She just got home from being hospitalized for a gallbladder infection.”	1	5
Too busy	“I think just time and, you know, having kids and not having too much time on the phone with each other. We don’t really see each other as often as we see our mom and talk to her. I think that’s just—I think that’s just the reason.”	2	2
Talked about all topics	“Sometimes it’s just, unless there’s something going on specifically with mom or another relative that has it, I don’t really think that we talk about it too much.”	4	5
No reason	“I guess it’s just not a normal topic that would be brought up.”	0	7
	Intentionally avoid discussion
Maintain privacy	“I think it’s something that my family sort of deals with on a personal internal level as far as—kind of like my way of thinking, they realize it’s something they have to deal with, they are dealing with it, and they just deal with it personally, they don’t talk about it.”	1	2
Relative won’t listen	“I stopped talking to my mom about it because she won’t listen. She’s going to do what she wants to do. I made up my mind that she’s going to do what she wants to do no matter what.”	1	1
Avoid lecturing	“I don’t’ want to be lecturing to people, you know, and I don’t know, I think we’re all pretty aware of what it is and why you get it and how it cannot be good for you and stuff.”	3	2
Too stressful or depressing	“They don’t want to reminisce about the stuff they got to do and because it just brings up so much emotion.” “I think it kind of just became a more depressing subject. We’re a family of high spirits, and when somebody’s down, we like to lift up their spirits.”	3	5
Offends relatives	“I have had repercussions of my son and daughter-in-law being mean to me because of saying that [grandson’s diet is unhealthy and needs to be improved] so I guess that was not a very good way of saying it and that offended them that I said they weren’t giving their son the right food to eat.”	1	1
	Distance
Physical distance	“I mean my one brother lives in South Carolina so I really don’t talk to him that much, we really only see each other like once or twice a year you know because he’s not in Ohio and we really just don’t see him unless we go down there. But I don’t really talk to him on any kind of regular basis.”	3	4
Emotional distance	“I don’t talk to my dad about anything. That’s just due to various issues. We kind of just avoid him.”	1	3

Abbreviations: SG, same generation; YG, younger generation.

Suggestions to Increase Communication

When asked how communication about T2DM could be increased within their families, 7 participants felt that communication was adequate and that no change was needed. Education about T2DM and sharing what was learned were most commonly suggested as means to improve communication by those who felt that improvement was possible: “If only one person did some research, they can bring it to the table and voice their concerns and you know, if you tell them like if you’re not active or if it is passed genetically, then you can do stuff to prevent yourself from getting it” (YG, woman, 30 years).

Others felt that communication would increase only if a significant event occurred in the family, such as a new diagnosis in a relative or a new complication in a family member with T2DM. A few participants stated that just being more open to discussion would increase communication and that their families should just “talk about it more” (Table 5).

Table 5.

Suggestions to Increase Communication

Suggestion	Example	SG (n = 15)	YG (n = 18)
None needed	“I think everything’s being done that should be done because we talk about it.”	2	5
Education	“Well even if one of us did it [became more educated about type 2 diabetes], we could share the information kind of thing, you know. “	9	10
Just talk about it more	“I guess just to talk and be asking if somebody has an issue, you know?”	3	6
Experience significant event	“Usually the only time it’s ever really come up in the conversation is when something bad has occurred. Somebody goes into – I don’t know the term for it, shock or sugar shock, where they’ll have to go to the hospital or something like that.”	2	4
Identify a role model	“I probably would find a point person in that family that everybody seemed to like. And everybody seemed to listen to regardless of what they say. And I would probably train that person in order for them to train—and I would probably pick someone older who’s fairly open-minded, someone middle-aged, and then I would probably pick a youngster, ‘cause it’s amazing what a child can do.”	1	2
Avoid negative labels	“I think that anything that limits our discussion about it is due to some outside factor where people associate diabetes with weight and with overall health and I think because of that like people are hesitant to talk about it because nobody really like talking about their weight.”	0	2
Talk without nagging	“I think sometimes it’s how we approach people, you know. You want to give them advice but you don’t want to be nagging about that advice.”	1	0

Abbreviations: SG, same generation; YG, younger generation.

Discussion

Reactions to T2DM

Similar to other studies, participants’ understanding and interpretation of their family members’ experiences influenced their attitudes toward T2DM and subsequent behaviors.²³ For example, many participants frequently mentioned fear or worry about developing T2DM based on their experiences with family members with T2DM. In some cases, this fear moved a person to take action to change his or her lifestyle, whereas others took comfort in the belief that diabetes is preventable and that they could take or were taking steps to change their lifestyles. Still others had a fatalistic attitude and felt that the development of T2DM was inevitable, either because of their FHs and/or because they felt that their efforts to change their lifestyles had no effect. Vahasarja et al²⁴ suggested that how those at high risk of T2DM experience their risk influences the adoption of healthy behaviors. After receiving an increased risk to develop T2DM based on screening results, Vahasarja et al found that people had to first internalize the risk before they perceived it as a serious threat. Individuals who perceived the risk of diabetes as threatening responded (1) with optimism about preventing T2DM through lifestyle changes or (2) in a fatalistic manner if they felt unable to achieve the desired health outcomes. The more information that participants with a threatening risk perception absorbed or internalized, the more responsive they were to health information and the more motivated they became to engage in physical activity. Familial communication about risk may help facilitate internalizing of risk and motivation to engage in healthy behaviors.²⁵

Perceptions of Cause and Risk

Participants readily recognized FH, obesity, and diet as contributing factors to T2DM—causal risk factors that have been recognized in other studies.^10,26,27 Although many participants recognized that T2DM ran in their families, few indicated that they discussed FH with other at-risk family members. Perhaps FH was less often a topic of conversation because it is perceived as a non-modifiable risk factor, unlike lifestyle risk factors.

Different patterns were noted in risk perceptions and causal factors between YG and SG participants. In particular, more YG participants identified themselves and siblings as being at risk of T2DM; more identified genetics and obesity as causal factors in their family; and more identified genetics, obesity, and poor diet as risk factors for T2DM in their families. More exploration is needed to determine if these are true generational differences in beliefs or if they are based on intrafamilial differences in FH and lifestyle behaviors.

Although participants in this study had multiple T2DM risk factors and recognized the multifactorial nature of T2DM, some still felt that they or other family members were not at risk of T2DM. Others found that understanding of T2DM disease causation is not always correlated with personal or familial risk factors and perceived risk.^10,28 Walter et al suggested that one makes sense of his or her FH through salience, personal mental models of health and disease, a personal sense of vulnerability, and perceived control or ability to prevent disease.²⁹ Health care providers and educators should explore and address these factors to facilitate effective communication about T2DM risk.

Social influence may affect perceptions of cause and risk. People without T2DM learn about causative factors through their relationships with other family members. It is not clear whether perceptions and misconceptions were due to communication or lack of communication within a family, as origins of these perceptions were not explored. However, since (1) communication of risk is a fundamental component of many health promotion programs³⁰ and (2) both awareness of and communication about increased risk may be associated with the adoption of healthy lifestyle behaviors,^8,9 families may benefit from educational interventions that work to address misconceptions about T2DM cause and risk, emphasize risk factors for T2DM, and encourage discussion of familial risk within families.

Communication

Some of the barriers to communication identified by participants in the current study were previously identified. In a cross-sectional study, 65% of patients with T2DM had spoken with a child or sibling about diabetes risk. Barriers to familial communication in this and other studies included family members not being open to advice or not considering diabetes as serious, as well as lack of perceived risk and lack of contact with family members.¹³ However, at-risk FDRs in the current study felt that the biggest barrier to familial communication about T2DM was that the topic never came up and was not relevant to those not diagnosed with T2DM.

Past research has indicated that patients serve as health educators in the family.³¹ However, at-risk participants in the current study suggested that they might also serve as health educators. Indeed, the most commonly suggested method to increase communication about T2DM among family members was to learn more about T2DM and to share the information with other family members (ie, appointing health information gatherers and disseminators³²). Perhaps a diffusion model would be feasible in which public health education efforts target family members with and without T2DM to take a team approach to diabetes prevention within a family. Such an approach would aim to increase awareness and facilitate communication by involving both an outside intervention (attending classes and/or office visits about T2DM risk and management that emphasize the importance of sharing information with family members) and an inside intervention (actually sharing the information with other family members). The former type of intervention has been successful at decreasing glycemic index and fasting insulin levels in a small pilot project that involved 12 two-hour group office visits for those at risk of T2DM and a support person.³³

Synchronizing outside and inside interventions to get the full benefit may be difficult, particularly since some YG participants felt that more discussion about T2DM in their families was not needed. The key to successful implementation of such an initiative is identification of the family members who have the best likelihood of reaching their relatives with the message. Timing may also be important. As noted in the current study and by others, a new diagnosis or complication may need to take place to initiate changes in lifestyle behaviors.²³ These findings are also consistent with the hereditary cancer literature, which suggests that new diagnoses may be teachable moments to educate family members about risk and ways to reduce risk.^32,34

Three participants discussed the importance of role models who demonstrate healthy lifestyle behaviors and encourage communication among family members about risk and prevention. Although only 1 participant suggested this be a family member without T2DM, the idea of demonstration as an important tool for encouraging people to improve their overall health^35,36 has led to the development of diabetes education programs and classes on managing diet and exercise.^37,38 Involving at-risk family members in the diabetes education process might facilitate role models who can educate family members without T2DM about risk (ie, family health educator) and model risk-reducing behaviors for other family members—particularly if education involves the importance of communication within families about T2DM risk and the steps that at-risk family members can take to reduce risk. In addition, such role models might be influential in shifting family norms—that is, moving normative behavior to include discussion of familial risk and engagement in risk-reducing behaviors. Engaging children as “influence agents” may also be impactful. A school-based program showed success engaging adolescents as family health educators, with family members with T2DM indicating improved lifestyle behaviors as well as more cohesive family ties and with adolescents reporting increased knowledge about T2DM.³⁸

Limitations

A small and conveniently selected sample limits the generalizability of the results of this study. In addition, recent experiences, such as a new complication of T2DM in a family member, may have affected participants’ responses or spurred communication about T2DM. Those who agreed to participate may have been more willing to communicate with researchers and family members about T2DM and more likely to perceive themselves at risk of T2DM. Comorbidities such as coronary heart disease and stroke, which may affect communication and risk perceptions among people with a FH of T2DM,³⁹ were not assessed. More than 1 person participated in the interviews in 8 families. It is not clear if views differed at the family level or by cultural or racial background. Finally, a study population consisting of more men might identify differing communication patterns or risk perceptions between men and women.

Implications

Many interventions implemented in populations at risk of T2DM focus on modifying health behaviors through diet and exercise programs and require frequent and regular attendance.^40,41 Other interventions focus on delivering personalized risk information as motivation to undertake preventive behaviors.^42,43 Most interventions targeting lifestyle behaviors of individuals at increased risk of T2DM have had limited to moderate success.^40,43–50 Interventions that target lifestyles and consider the family context that might influence behaviors have met with promising results.^33,38,51 Because of the potential for social influence within families, interventions that (1) identify at-risk family members and family members with T2DM to act as family health educators and model healthy behaviors and (2) facilitate intrafamilial communication about risk and risk reduction behaviors may influence other family members to adopt such behaviors. These interventions should be used as complements to, not replacements for, interventions utilizing direct and explicit motivation to make positive behavior changes.