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Communication within Families at-risk for Type 2 Diabetes

A thesis submitted to the

Graduate School

of the University of Cincinnati

in partial fulfillment of the

requirements for the degree of

Master of Science

In the Department of Pediatrics

Of the College of Medicine

April 2013

by

Jennifer Hopper

M.S. Valdosta State University, 2008

Committee Chair: Melanie F. Myers, PhD, MS, CGC1, 2

Committee Members: Laura M. Koehly, PhD3, Robert Smith, MD1, Carrie Atzinger, MS, CGC1, 2

1 University of Cincinnati, Cincinnati, OH, USA 2 Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

3 Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, MD, USA

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Abstract

Purpose: 1) To identify characteristics within families at-risk for Type 2 diabetes (T2D),

based on a family history of T2D, which either facilitate or hinder risk communication and 2) To

gather participants’ perspectives on ways to increase risk communication about T2D within at-

risk families and ways to reduce the risk of developing T2D among at-risk family members.

Methods: Semi-structured qualitative interviews were conducted with adults diagnosed

with T2D, who were recruited through a pharmacogenetic database used in a previous research

study at the University of Cincinnati. Themes were developed using deductive codes based on

pre-determined interview questions and inductive codes based on interviewee responses, and

then coded by two coders.

Results: Themes were grouped and discussed under four major categories: 1)

Characteristics facilitating and impeding communication 2) Familial communication patterns 3)

Role of family and the role of society in communication about T2D risk and 4) Perceived causes

of T2D.

Conclusions: Communication within at-risk T2D families informs genetic counseling

practice as well as public health practice. Genetic counselors can help families facilitate

discussion about T2D based on familial characteristics. Public health interventions should be

developed based on relationships between individuals within at-risk families, potential barriers

to communication, individuals’ family and social environments, and perceived cause of T2D.

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Acknowledgements

I would like to thank my research advisory committee for their valuable input on this project.

Also I would like to thank Brandon Smith, BS, for his help with data collection and Sara

Fernandes, BS for her help with data collection and coding. Finally, this project was funded by a

grant from the National Institute of Health and a K-award, both awarded to Melanie Myers,

PhD, for her work in T2D research.

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Table of Contents

Introduction………………………………………………………………………………………………………………………………7

Methods………………………………………………………………….………………………………………………………………10

Results……………………………………..………………………………………………………………………………………………14

Discussion………………………..………………………………………………………………………………………………………27

References….……………………………………………………………………………………………………………………………34

Appendices, Tables, Figures.…………………………………………………………………………………………………….36

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Appendices, Tables, Figures

Appendix A: Qualitative interview guide…………………………………………………………………………………36

Appendix B: Codebook…………………………………………………………………………………………………………….37

Table 1: Inter-rater reliability for each theme…………………………………………………………………………47

Table 2: Participant characteristics…………………………………………………………………………………………49

Figure 1: Types and flow of communication……………………………………………………………………………50

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Introduction

Diabetes is the seventh leading cause of death in the United States and affects 25.8

million people or 8.3% of the U.S. population. An estimated 90-95 % of individuals diagnosed

with diabetes have type 2 diabetes (T2D). Another 79 million Americans are estimated to have

“pre-diabetes,” where their blood glucose levels are higher than normal but not high enough to

be placed in the diabetic category [1]. In 2007 the estimated total direct and indirect costs to

society associated with diabetes, including medical costs, disability, work loss and premature

mortality, were $174 billion [1]. Multiple studies report that physical activity and a low calorie

and low fat diet can help prevent T2D or at least delay the onset of the condition [2, 3].

However, the current prevalence of T2D is significantly high at 16 million Americans [1] and if

current trends continue, the Centers for Disease Control and Prevention estimates 1 in 3 U.S.

adults could have T2D by 2050 [4].

Based on an analysis of the 6-year National Health and Nutrition Examination Survey

(NHANES), the prevalence of diabetes in high risk families, which are those families with at least

two first-degree relatives or one first-degree relative and at least two second-degree relatives

with diabetes from the same lineage, is 30%. Individuals in these high-risk families are 5.5 times

more likely to develop T2D than individuals in average risk families, which are families with no

history of diabetes, or at most, one second-degree relative with diabetes [5]. Family health

history (FHH) has been identified as an important indicator of risk and a catalyst for

communication of risks of common and chronic diseases [6-10].

Patients who are informed of their risks for developing T2D by their physicians are more

likely to engage in risk reducing behaviors, such as making lifestyle changes, than patients who

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are not informed of their risks [11]. Studies have posited that people with knowledge of their

risk for T2D based on their family history are also more likely to engage in risk-reducing

behaviors [11, 12]. If individuals at an increased risk of T2D, based on FHH, are identified early

by communication about FHH then these individuals can be educated about the potential risk

of developing T2D, as well as the risk-reducing actions they can take to help prevent T2D.

Explanations of risk that are generated to target a general audience are difficult to

connect to on a personal level, and appear to be insufficient for motivating behavior change

[13] ;as a result, individuals may not recognize the importance of changing their lifestyles to

reduce disease risk. Royak-Schaler, et al., conducted focus groups with 25 African-American and

17 Hispanic females, ages 40-60, with no personal history of breast or colorectal cancer [13].

Participants answered open-ended questions about their understanding of cancer risk factors,

their perceptions of personal cancer risk, strategies for reducing risk, and risk communication.

Results indicated that participants had limited knowledge about general cancer risks and they

wanted to receive more information about risks, but preferred that the risk information be

conveyed at an individualized level, and include personal risk factors such as family history [13].

Family communication about T2D risk among families impacted by T2D is an approach to risk

communication that allows family members to act as ambassadors in providing risk information

at a more individualized level that is tailored to their personal risk factors [8, 13].

Whitford, et al., examined how receptive first-degree relatives of a family member with

T2D were to risk communication by their T2D affected relative [14]. Survey questionnaires were

mailed to a random sample of 703 patients with T2D who attended an urban hospital diabetes

clinic, and the patients were instructed to pass along the survey to at least one first-degree

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relative. Relatives from 257 families completed and returned the survey and answered

questions, among others, on perceived susceptibility to T2D, knowledge of risk factors for T2D

and desire to be spoken to about the possibility of reducing their risk of diabetes. Results

showed that first-degree relatives of patients with T2D who had been informed about their risk

of developing T2D by their affected relatives had increased perceived susceptibility to T2D,

increased knowledge of risk factors and an increased sense of the seriousness of T2D compared

to those first-degree relatives who had not been informed of their risk for developing T2D.

Additionally, T2D patients and their relatives had similar attitudes, knowledge and anxiety

about the risk of developing T2D within their families. Therefore, it was suggested that

encouraging individuals who are affected with T2D to communicate with their unaffected

family members about the risk of developing T2D and potential risk-reducing behaviors would

lead to an increase in knowledge about risk for disease; hopefully communication would then

lead to a change in lifestyle behaviors that could help reduce the risk for developing T2D [14].

Family dynamics are complex and tend to be unique to every family. In order to increase

communication about disease risk within at-risk families, it is important to understand the role

that family communication plays in the flow of T2D risk information. In a study looking at the

family role of melanoma risk communication [6], 313 first degree relatives of melanoma

patients completed multiple surveys assessing family coping type, family adaptation, family

cohesion and family health beliefs. Results illustrated those families who engaged in active

coping, and reported to be adaptable and cohesive had an open style of risk communication

and an increased frequency of communication compared to those families who did not engage

in active coping, and did not report to be adaptable or cohesive. [6].

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Another study by McCann, et al., on family communication of information about

colorectal cancer risk, also identified family variables related to risk communication [9]. Thirty

people from 17 families with a FHH of colorectal cancer participated in qualitative interviews,

and results indicated that communication within families about risk can be affected by family

members’ feelings of duty to listen to relatives affected with cancer and responsibility to inform

children who may become affected in the future of their risks. Risk communication among the

families was inhibited in cases of a recent diagnosis of colorectal cancer or bereavement from a

recent death, due to the sensitive nature of these occurrences, and was also inhibited where

there was less frequency of contact between relatives [9].

Identifying factors that impact risk communication in at-risk families can provide insight

on the best approach to utilizing FHH as a way to promote the adoption of healthy behaviors

that could lead to a decreased risk of disease. The purpose of this study is to identify themes

within families at-risk for T2D, based on a family history of T2D, which either facilitate or hinder

risk communication. Additionally the study aims to gather participants’ perspectives on ways to

increase risk communication about T2D within at-risk families and ways to reduce the risk of

developing T2D among at-risk family members.

Methods

Study Type

Semi-structured qualitative interviews were conducted with adults diagnosed with T2D

to identify perceived factors that affect T2D risk communication within respective families. A

phenomenological approach guided the qualitative research to understand the participants’

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lived experiences from their own perspectives [15]. Institutional Review Board (IRB) approval

was obtained from the University of Cincinnati.

Interview Guide

Questions from a previous qualitative study that looked at explanations of risk in

families with a history of colorectal cancer [16] guided the development of questions for the

current study. These questions were piloted on three colleagues to assess face validity and

comprehension of questions. Based on feedback, that some questions did not have good face

validity and additional topics should be addressed, the survey was revised by deleting a few

questions and adding questions to encompass the additional topics. Questions added covered

the topics of how participants felt about diabetes, challenges to talking with family members

about T2D, ways to increase communication about T2D and ways to reduce the risk of T2D. The

final questions asked about participants’ experience with T2D, their feelings about T2D, who in

their family had been diagnosed with T2D, who in the family participants talked to or did not

talk to about T2D, whether participants thought any family members were at risk of T2D, and

thoughts on how to increase T2D-related communication as well as reduce the risks of T2D (see

Appendix A).

Study Subjects

Participants were randomly selected from a database of patients with T2D who

previously participated in a preliminary pharmacogenetic (PGx) study. The participants from the

PGx database were labeled as the index participants. As part of the PGx study, clinical data was

collected from T2D patients from multiple family practice sites in the Greater Cincinnati area.

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The aim of the PGx study was to examine the effect of common genetic variants in the PPARG

gene on patients’ responses to thiazolidinediones, a class of medications used to treat T2D.

There are 247 participants with T2D in the PGx database who range in age from 30-96.

We invited proportionally random samples of individuals up to age 85 who self-identified in the

PGx study as African American, Appalachian or Caucasian, non-Appalachian to participate in the

family communication study to better reflect the diversity of individuals impacted by T2D.

Participants were sorted in the database according to their racial/ethnic identification, and then

their unique identification numbers were entered into an online number randomizer tool,

through which 10 individuals from each race/ethnic group were selected. Thirty individuals (10

from each group) comprised each wave of participants, and a total of 4 waves of participants

were invited to participate in the study. Individuals unable to provide verbal consent were

excluded. All interviews were conducted in English.

Data Collection

Potential index participants who met the inclusion criteria were sent a recruitment

letter, asking them to participate in 2 phone interviews (the qualitative interview and a

quantitative survey to identify familial characteristics that are related to the dissemination of

T2D risk information in at-risk families), as well as an initial phone contact to confirm eligibility.

Invited participants were asked to either check a box indicating whether they did or did not

wish to participate. Individuals agreeing to participate were asked to provide preferred days,

times and phone numbers when they could be contacted by phone. All invited participants

were asked to mail their response back to the researchers in a postage-paid envelope. If a

response was not received within two weeks, the invitation letter was mailed again. If there

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was no response within four weeks of the initial mailing, potential participants were contacted

by phone to ask if they would like to participate in the study.

During the initial telephone contact, participants were asked to provide demographic

information, to list additional individuals in their families who might also be willing to

participate in the study and to indicate a convenient time for a follow-up phone call. During a

second phone call, the qualitative interview was conducted. Contact information for

participants’ family members and permission to contact these family members was also

obtained, and a time for the quantitative phone interview was scheduled. Both index cases and

unaffected relatives participated in qualitative interviews, however, only results from the

qualitative interviews with individuals who had been diagnosed with T2D are reported here.

Each participant received a $25 gift card to a popular retail store after completing the

qualitative assessment. Participation was voluntary and individuals were informed that they

could discontinue participation at any time.

Coding

Themes were developed using deductive codes based on pre-determined interview

questions and inductive codes based on interviewee responses. For example, themes that

emerged when participants were asked about reasons for not talking with family members

about T2D included not feeling close to their family members (“no close bond”) or that their

relatives lived too far away to have discussions (“distance”). [17]. Data organization and coding

was performed with the use of the qualitative software analysis program NVIVO. After training,

two coders analyzed three transcripts together to standardize application of codes. The primary

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coder then coded all transcripts and the secondary coder coded 40% (8) of randomly selected

transcripts.

Cohen’s Kappa was used to calculate agreement and κ-values above 0.60 were

considered to be in agreement [18]. After the transcripts coded by both the primary and

secondary coder were evaluated, any themes not reaching a κ-value of greater than 0.60 were

discussed between the coders. The coders reached consensus on the best code to apply, and

the remaining transcripts were reanalyzed to ensure proper application of codes across all

documents. All themes had a κ-value of greater than 0.60 (see Table 1). Emergent themes were

grouped into 14 different categories (see Appendix B). In this paper, themes are discussed

under the following topics: characteristics facilitating and impeding communication, types and

flow of familial communication, role of family and the role of society in communication about

T2D risk, and perceived cause of T2D.

Results

Participant characteristics

Overall, 105 invitation letters to participate in the qualitative survey were mailed to

individuals from the PGx database. From those letters, 25 individuals agreed to participate, 20

individuals actually participated, 67 were unreachable or declined to participate, and 13 letters

were undeliverable. Fifteen of the participants were female and 5 were male. Based on self-

reports in this study, 6 identified as Appalachian, 7 as African American and 6 as Caucasian,

non-Appalachian. The majority of participants were married (n = 12), 3 were never married, 3

were widowed, 1 was separated and 1 was divorced. When asked about education, 8 reported

that they received a four year college education or higher, 7 participants reported having an

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associate’s degree and 5 had a high school diploma or GED. Based on the definitions of at-risk

families used in the NHANES survey [5], 11 participants had a high risk family, 7 had a moderate

risk family, and 2 had an average risk family (see Table 2 for additional participant

characteristics).

Characteristics facilitating and impeding communication

Some individuals reported that they most often spoke to family members with whom

they shared a close bond about T2D (n = 4). Conversely, other participants (n = 6) reported that

they did not discuss T2D related information with family members with whom they did not

share a close bond. For example, one participant explained that she did not talk with her

relatives about T2D because they were no longer close: “Over the last year we’ve just become

somewhat estranged, after my mom died. You know, and they just don’t want to hear from me.

I go by and try to talk to them anyway but they really don’t want to talk to me, really.” (3, F,

African American)

Those with T2D often preferred to talk with family members and friends who were also

affected with T2D because they felt there would be common shared experiences among them

(n = 9). Participants who indicated that they preferred to talk to a family member or friend

because that person was also T2D affected, had an associate’s degree or less education. One

participant explained that she chose to talk to a close friend about T2D because this friend was

also affected by T2D, “She and I, we’re the same age, we’ve known each other our whole lives

and we both have Type II diabetes, and we found out about the same time.” (10, F, Caucasian)

Three participants chose not to communicate with their family members about T2D because

their family members did not have T2D. The affected participants felt that their unaffected

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family members would not be able to relate or take T2D seriously because they weren’t

affected by it. One participant explained, “I don’t really talk to my sisters and brothers about it. I

mean it’s kind of hard. I guess I would talk to them but if you never, if you’re not a type 2

diabetic then they can’t relate until they actually walk through your shoes.” (8, F, African

American)

Four participants thought that the family members who might benefit most from

communication about T2D and its risks were too young to understand the information. One

participant expressed that she was concerned about her grandchildren’s risk for getting

diabetes, but when questioned if she had discussed her concerns with him she stated, “No, I

haven’t. They’re not really at the age that I would do that.” (5, F, Caucasian) Others felt some

of their family members would listen to information about T2D and risks, but would not actively

engage in the conversation or give feedback. These participants wanted to engage in

communication about risk with their unaffected family members, but felt that these individuals

would not successfully receive the risk information. One participant explained, “It’s like you talk

to somebody and they don’t really hear you…I can see the wheels turning, she’s [sister] busy,

dialing up a conversation and getting ready to tell me everything she’s been through.” (2, F,

Caucasian)

A few participants stated that communicating about T2D wasn’t a priority with some

family members because these individuals live too far away (n = 3). When the participants get

together with these relatives who live far away, T2D was not a topic that took priority in the

communication process. One participant explained, “But as far as my siblings go, there again,

because of the distance, it’s just – when we talk to each other on the phone, it’s not something

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that we talk about.” (1, M, Appalachian) Other participants reported that their family members

are too busy with other things going on in their lives to discuss T2D (n = 4). Others reported that

family members were too wrapped up in careers and family or personal issues. One participant

discussed how she chooses not to talk to a cousin because she is dealing with her own sickness:

“People just don’t wanna hear about a whole lot of sickness. It’s not that they don’t care,

they have problems of their own and sometimes some of their problems are so bad, or so

much more than mine, you know you don’t mention that to them. When you got a

cousin that’s dying of cancer you really don’t wanna talk about it, you know?” (20, F,

African American)

Types and flow of familial communication

Communication resulted from affected T2D participants discussing T2D with both

affected and unaffected family members and friends. Often, the type of communication

differed between affected participants and their family members and friends due to maturity

(e.g. developmental stage of unaffected family member) and disease status (e.g. affected or

unaffected with T2D) (See Table 3). Of note, supportive communication between affected

participants and both their affected and unaffected relatives was only reported in Appalachian

and African American populations. Finally, there were some communication themes that

applied to all family members and friends, regardless of disease status and maturity.

Communication between affected participants and younger children:

Some affected participants shared examples of how younger, unaffected children in

their families made sure that the participants were adhering to lifestyle “rules” for T2D. A

participant described how her nephew kept his grandfather, who was affected with T2D, in line

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with eating habits, “My nephew was 2 or 3 at the time and if he’d catch my dad eating

something he shouldn’t be eating you’d hear his little bare feet come patting through the house

and he’d be like ‘grammy, paw’s eating shugnar’.” (19, F, Appalachian)

Participants often felt that sharing their knowledge about and personal experiences

with T2D would help with risk reduction efforts in their children and grandchildren. A

participant shared that having knowledge about the risks for T2D and then sharing and

reinforcing that knowledge with her children and grandchildren could help reduce their risks of

getting T2D:

“Sister and I, she’ll probably get diabetes too but we might be able to prevent my

daughter and my granddaughter-grandchildren from getting it. If we can teach them,

reinforce with them, show them. Showing is a big deal. You know, then hopefully the

next generation won’t get it until late if they get it at all.” (7, F, Caucasian)

Communication between affected participants and other affected individuals:

Affected participants often commiserated with one another over their experiences with

T2D. One participant indicated that she and her T2D affected sister served as a support system

for one another, “My sister has to keep me with my head up cause like I said she has type II

diabetes too. We just talk to each other and keep each other from being depressed all the time.”

(12, F, African American) Another participant explained how he and his sister, who is also

affected by T2D, encourage each other about diabetes management: “But you know I try to

encourage my sister anyways, we’re probably the closest out of my family. *** and I, you know

we try to encourage each other about eating sweets and kinda watching your diet and uh

making sure we’re taking the medications.” (4, M, Appalachian)

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Affected individuals would share their personal experiences of living with T2D with one

another, sometimes with the intention of learning new or better ways to manage their T2D.

One participant explained the conversations that she had with a T2D affected coworker about

T2D:

“Well, there’s this girl at work. We speak about it because she’s got diabetes; she’s not

managing hers very well. I discuss with her and I guess I’m telling her about my journey

and how she can try to do things and make things better for herself. So I discuss that

with her.” (14, F, African American)

T2D affected individuals also created support networks with other T2D affected

individuals. One participant talked about how she and several of her coworkers supported each

other through their diabetic journey:

“We jokingly called it our diabetic support group, even though we jokingly called it that I

think it was good for all of us, because on days when you just felt like you were pounding

your head against the wall no matter what you did, you just couldn’t control your

numbers, you had someone there who understood.” (19, F, Appalachian)

Supportive communication between affected participants and unaffected adult relatives:

T2D affected individuals reported that they received both tangible and verbal support

from their unaffected family members. Often unaffected family members encouraged their T2D

affected family members to make good lifestyle choices. A participant shared,

“Well we eat dinner every week and my dad has gone from regular hot dogs to fat free.

And my mom tries to make the side dishes with me in mind. She makes tea, and makes

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unsweetened tea for me and then everybody else has the sweet tea.” (15, F,

Appalachian)

Unaffected family members also provided support to their affected relatives by showing

concern about their affected relatives’ health and well-being. One participant talked about how

her son always checks in with her about her T2D, “He’s (son) always asking me ‘Momma are

you taking your medicine? Is there anything I can do?’” (6, F, African American)

Risk communication between affected participants and unaffected adult relatives:

About half of the affected participants (n = 12) reported that they communicate with

unaffected family members about T2D because they want to help reduce the risk of T2D from

occurring in these family members. Some participants felt that simply sharing what they knew

about T2D and how they manage their T2D would be helpful information for unaffected family

members. One participant explained,

“Well if I need to mention it (T2D) to them (unaffected family members) or it comes up in

conversation or something, then I’ll tell them what I know. I will do what I can to give

them guidance or help…I don’t know everything about it, but I know what kind of sort of

works for me.” (11, M, Caucasian)

A few participants specified that they thought using scare tactics were the best way to

bring about a change in behaviors that could lead to risk reduction in unaffected family

members. One of these participants shared, “I do mention to them (daughters), ‘Ok, get that

weight off of you. You know I’m diabetic, it runs through the family.’ You know, I try to scare

them up, my two daughters.” (14, F, African American)

Barriers to communication between affected participants and unaffected adult relatives:

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Affected participants also reported that there were several barriers to communicating

with their unaffected relatives. Some participants (n = 4) reported that unaffected family

members tended to avoid having discussions about T2D with them because these relatives did

not want to discuss scary or negative topics. One affected participant explained that his kids

tried to avoid potentially negative topics:

“My wife and I have wanted to discuss funeral plans with them down the road and they

don’t even want to discuss that. I guess they operate under the philosophy that no news

is good news. They don’t really want to discuss that. So if I sit down with them and

discuss diabetes, I’d be beatin’ my head against the wall.” (18, M, Caucasian)

Two participants talked about how some of their unaffected family members just did

not engage in communication about T2D, for unknown reasons. One woman tried to talk to her

unaffected son, but was not successful, “He really don’t say much about it. He just don’t, I don’t

know. He don’t really feel here nor there about it…He just don’t talk about it.” (12, F, African

American)

One participant shared that she believes her children are not open to discussing T2D

because they don’t think it could happen to them: “I just think they think it couldn’t affect them

like it’s affected me. Just because mommy got it or big grandma got it, that ain’t gonna happen

to me.” (6, F, African American) Another participant stated that her kids felt like it was

“personal attack against them” if she tried to discuss their risk for T2D. When discussing her

daughter’s weight, the daughter became defensive:

“I said, ‘But you know you could really afford to lose some weight because you don’t

want to become diabetic.’ And she immediately was like, she took offense to it, she was

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like ‘Well you just-the older you get, you just become more rude, I just can’t believe that

you’re so rude to tell me about losing weight.’” (3, F, African American)

One participant also shared that she did try to talk to her daughter about T2D, but her

daughter did not think she was at risk, so the participant does not try to talk to her daughter

anymore about T2D: “I brought it up once before and she told me that she’s not worried about

these type 2 diabetes and that’s why I don’t talk to her anymore.” (12, F, African American)

Communication between affected participants and all family members and friends:

Some affected participants reported that emergency preparation was discussed with all

family members and friends. Four participants shared that they wanted their relatives to be

prepared in the event that they a bad complication of T2D occurred. For example, one person

explained:

“I mean, because I almost died last year, we’ve already talked about the end of life

decisions, you know, so I’ve got a living will and I’ve already told the kids that because of

the diabetes…’Well we may have to do that and thank you but I don’t really want to.’ So

I talked to my sister, my kids, my grandkids.” (7, F, Caucasian)

In a few instances affected participants had a difficult time discussing T2D with all family

members and friends, regardless of maturity and disease status. A fatalistic attitude was

described in one family due to the amount of family members already affected by T2D. The

participant from this family explained:

“We all saw how it affected other family members and uh that’s probably another

reason why we don’t talk about it so much because we’ve been through it so much, so

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many times, with so many other family members that we all kinda shrug our shoulders

and go that’s diabetes, that’s life. We just have to deal with it.” (19, F, Appalachian)

A few participants (n= 3) suggested a threshold of severity related to their T2D had to be

reached before family members placed importance on discussing T2D. These participants felt

like once this threshold was met, T2D would become a priority, and families would therefore

have to be faced with the saliency of T2D and engage in communication about T2D as a result.

For example, when asked why T2D was not discussed with her unaffected sister one participant

stated, “Unless I was in the hospital facing something imminent, she (sister) wouldn’t want to

hear about it, she wouldn’t want to talk about it.” (19, F, Appalachian) Two participants

reported that their families only discussed T2D right after they were diagnosed. T2D was not

discussed again after the diagnosis, because there was nothing new to discuss: “I mean when I

was first diagnosed (we talked about T2D), but not anymore after that. It’s not like ‘Hey, how’s

that going?’ Nobody questions and I don’t really have to talk to them about it.” (13, F, African

American)

Role of family and the role of society in communication about T2D risk

All participants were asked how they thought communication about T2D and risks could

be increased within at-risk families. Participants reported several ways that at-risk families

could take an active role in increasing communication and reducing risks in their own families.

They also provided many suggestions on how society could potentially take an active role in

increasing communication and reducing risks in at-risk families.

Many participants (n = 9) thought that if unaffected family members looked at

educational materials about T2D, these materials would help create an awareness or reality

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about the risks for developing T2D and the complications associated with T2D. Participants

thought this awareness could help increase communication about T2D and its risks among

family members. One participant suggested that reading something that paints a realistic

picture of the negative side of T2D might be helpful for his unaffected relatives, “Is there

literature that they could read to say they were a threat? Maybe if they got somethin’ like that,

they’d read it and it might shake ‘em up a little bit or show them the results of diabetes.” (9, M,

Caucasian) Also, one participant cited improved knowledge as a way to bring about risk-

reducing behaviors: “I think if my parents had the knowledge that I have now about diabetes,

they could have or they would have…have taken better choices, made better choices.” (17, F,

Appalachian)

Some participants (n = 3) suggested using family gatherings as way to increase

communication about T2D. One participant said that when families get together they need to

discuss family health history: “I think when you start talking about family history, you know

when you sit down with your children or your brothers or sisters, they need to talk about the

family history and the things that are going on in the family. My children know their family

health history.” (20, F, African American) Another participant said that she thought creating a

genealogical health chart to send to family members would be a good way to increase

communication, “And I did suggest to them that we do a health, uh a genealogical health chart,

you know…and send that to each of the family members.” (3, F, African American)

When asked about ways to increase communication in her family, another participant

thought that she would need to overcome T2D in order to get her family members talking:

“(Increase communication) within my family? Probably that I would be able to overcome where I

25

am now. I think they would be inspired and see what good eating and exercise does.” (15, F,

Appalachian)

When asked about ways to reduce the risk of developing T2D in their families, the

majority of participants (n = 15) responded that changing lifestyle factors would be the best

way to reduce risk, including watching diet and increasing activity. A participant shared:

“Try to get them involved in healthier lifestyles. If you’re big on going out and walking up

and down the street or in the park or whatever, try to get them to go with you. Try to

encourage them to eat the right kind of foods…you just have to eat in moderation or

very limited quantities.” (11, M, Caucasian)

Some participants suggested that reducing risks were the responsibility of those with

T2D. One woman said; “You can do something about it if you want to. But you have to have the

wanting. Just like any other disease, it can be treated if it’s caught in time.” (17, F, Appalachian)

Another woman, who takes T2D medications and has made better lifestyle choices in terms of

diet and exercise, displayed anger that her sibling who also had T2D had not made more of an

effort to control the disease: “She’s (participant’s sister) not here anymore because she chose

not to be. She chose to accept the fact that she was gonna die anyways….but had you sought

more treatment or not refused your treatment, then maybe you’d still be here.” (6, F, African

American)

There was also mention of societal interventions that could help increase

communication about and reduce risks for T2D among at-risk families. Two African American

participants said that if T2D was discussed at church, then families would take the disease more

seriously and increase their communication about it. For example, one participant said, “If the

26

church took on as much emphasis of lifestyles as they do the teachings of God, then maybe we’d

know that if we don’t take care of our bodies, they’re not going to take care of us.” (8, F,

African American)

Several participants (n = 4) felt strongly that actions to reduce risk should start early in

the schools. One participant suggested: “Show them (kids in school) what happens, you

know…why their body needs, you know, those sugars for energy and what are good and what

are bad and what can happen. It might stick with them.” (2, F, Caucasian)

One participant suggested that there is a negative stereotype attached to individuals

who have T2D, and getting rid of this negative stereotype would help increase communication.

“I think there’s a stigma on the disease that it attacks people who are overweight and

therefore people think they’re lazy and they brought it on themselves type thing. It’s not

cancer that just hits anybody and everybody. I think there’s a stigma attached to it…I

think if people didn’t judge others by thinking like that, you have this disease so

therefore I judge you as being fat or lazy or whatever, if they just said, ‘Yeah that’s what

you have. Ok, how do you deal with it? What do you do?’ it would be different.” (5, F,

Caucasian)

Perceived cause of T2D

Many of the participants (n = 15) indicated that the cause of T2D in their families was

due to factors over which they had no control, such as genetics and ethnicity, whereas about

half of the participants (n = 11) listed lifestyle factors as the cause of T2D in their families. The

two individuals who reported their race/ethnicity as a risk factor were African American

females. Only 7 individuals recognized that the T2D in their families could be caused by a

27

combination of lifestyle and uncontrollable factors. For example, when asked about the cause

of diabetes in her family one participant said, “I think some of it is inherited and some of it is

just poor choices that you make.” (17, F, Appalachian)

There seemed to be disagreement between perceived cause of T2D in families and

perceived reasons why unaffected family members were at-risk for T2D. Despite many

participants reporting the perceived cause of T2D in their families as genetics, many individuals

identified lifestyle factors as playing a role in risk for family members. For example, one of the

participants who originally reported genetics as the perceived cause of the diabetes in her

family, “what I know is that it’s genetic based…just the fact that one person had it, it can trickle

down, we just don’t know when and how,” identified lifestyle factors as the reason for her

perceived risk for her grandson, “*** is 13 and he’s borderline obese. And if he’s borderline

obese, that means he has the potential to be diabetic.” (6, F, African American) When looking

at differences in responses across themes based on family risk category, those individuals who

reported genetics as the cause of T2D in their families were from either a high risk or moderate

risk family.

Discussion

Patenaude, et al., suggested that as the need for preventive programs for individuals at

increased genetic risk of disease grows, the need for research related to how people

understand risk, how they communicate risk information and health concerns within their

families, and how awareness of risk affected self-management of health will grow as well [19].

To our knowledge, our study was the first to examine the different characteristics within

families at-risk for T2D that facilitate or impede communication about the risks for developing

28

T2D, as well as the types and flow of communication in at-risk T2D families. Results indicate

future directions and efforts for genetic counseling practice and health education.

In genetic counseling practice, common, chronic diseases are noted frequently when

taking a family history from a patient. Therefore, a genetic counseling session is an ideal

platform for discussing risks for T2D based on FHH. A previous study looked at the effectiveness

of genetic counseling techniques focused on communicating T2D risk in at-risk families [20].

Participants in this study reported favorable perceived control of and satisfaction with a genetic

counseling session that incorporated clinical recommendations and lifestyle changes to address

T2D risk. The current study demonstrates that family dynamics can facilitate or impede

communication about T2D, and that the types and flow of communication vary based on

maturity and disease status of family members. Genetic counselors can assess family dynamics,

disease status, and development stage to more effectively develop strategies for disseminating

T2D risk information amongst family members.

Furthermore, patients could benefit from having conversations with genetic counselors about

how to facilitate discussion with their family members about T2D disease risk.

This study also reported many findings about communication in T2D at-risk families that

can inform health education practices. One element to think about for health education is the

audience, specifically the characteristics of the audience that could potentially change the

effectiveness of interventions. This study found that T2D affected individuals have different

types of relationships amongst family members (affected vs. unaffected), and that

communication about T2D changes based on these relationships. Affected T2D participants

demonstrated homophily in their preference to discuss T2D with other affected family

29

members or friends, as opposed to unaffected relatives and friends. The participants suggested

that an unaffected relative would not be able to relate to the participants’ experience with the

disease. Other studies have also noted homophily as a variable in risk communication [8, 21].

Participants also chose to discuss T2D with individuals with whom they shared a close bond,

and chose not to discuss T2D with certain relatives because they did not share a close bond.

Understanding the structure of close ties in the family might identify pathways of information

exchange in at-risk T2D families. These pathways of communication can be then targeted for

interventions that aim to deliver information about risks and risk reducing behaviors to at-risk

families.

Our study also found that affected individuals from Appalachian and African American

populations more often engaged in supportive communication with relatives than Caucasian

families; this finding speaks to the possibility of higher family cohesion in Appalachian and

African American families. Support, encouragement and sharing experiences could serve as

methods to teach unaffected relatives about risks and complications associated with T2D in

families with high cohesion. If an unaffected relative is providing support and/or

encouragement to their affected family member, the unaffected relative may also learn about

lifestyle modifications that are used in the management of T2D. Future studies could look at

how supportive relationships that exist between affected and unaffected relatives teach

unaffected relatives risk reducing strategies.

Another finding from this study relates to communication about T2D between older and

younger individuals in at-risk families. Affected individuals had a strong desire for risk reduction

in children and grandchildren, indicating a sense of duty to these younger generations [9]. One

30

explanation may be that some affected individuals who are older may be entrenched in their

bad behaviors related to T2D and decide to focus on younger individuals who are not set in

their ways. Starting risk reduction efforts early may be critical to obtaining the most successful

adoption of risk reducing behaviors that could help in the prevention of T2D.

When looking to implement health interventions, the potential barriers are a second

element to take into consideration. There were many familial characteristics reported that act

as barriers to communication about T2D between affected participants and unaffected adult

relatives. Many participants stated that their unaffected relatives tried to avoid potentially

negative or scary conversations about disease and some seemed to be generally uninterested

in the topic of T2D. Saliency of T2D also seems to impede communication in at-risk families

[22]. Some participants reported that their unaffected relatives didn’t think that T2D could

affect them and that they would not be willing to discuss T2D unless a significant health event

occurred. Future research should aim to investigate what would make T2D more salient for

unaffected individuals in families at-risk for T2D, in the absence of a significant health event.

One participant explained how fatalism was a variable that was present in her at-risk family.

This participant discussed her family’s acceptance of T2D as fate, and cited this belief as the

reason her family did not discuss the risks of developing T2D. The participant was self-reported

Appalachian, which may play a role, as fatalistic attitudes have been cited previously in

Appalachian populations [23]. Geographic location of a relative was another variable that

hindered communication; this variable has also been identified as a barrier in other familial

communication studies [8, 9, 21]. Because geographic location is consistently cited as a barrier

31

to communication, efforts to understand how and why distance seems to create gaps in

relationships would be important.

A third element of health education to think about is tailoring interventions based on a

person’s familial and social environments. An article on adolescent obesity proposed

implementing multiple interventions simultaneously to target family and social influence [24].

The interventions focused on 3 settings: the household and the child’s family outside the

household, the neighborhood and community, and the school.

When asked about ways to increase communication about and reduce the risk of T2D in

at-risk families, participants in this study suggested a few different strategies, including ones

that involve families taking action. Many of the individuals suggested that awareness about T2D

could be increased by family members reading educational materials about T2D, and that this

awareness could then lead to a change in lifestyle in unaffected relatives. Using FHH to facilitate

discussion about risks for disease has also been suggested to increase communication about

T2D risks [6-10]. Some participants agreed with the utility of FHH as a method to increase

communication, and said that talking to their families about their family’s history of T2D is

important; discussions about FHH can help encourage unaffected relatives to take steps to

improve health and reduce the risks of developing T2D. Finally, respondents felt that

unaffected relatives could make lifestyle and behavior changes to help reduce risk. Other

studies have also noted the success of making lifestyle and behavior changes for risk reduction

[2, 3].

Participants also suggested ways that society could help increase communication about

T2D, including discussion in schools to generate T2D awareness and communication. Two

32

African American participants suggested that talking about T2D in churches may help

encourage unaffected individuals who are at-risk to start talking about T2D within their

families. Targeting churches within African American communities may be a good starting point

for developing interventions to increase T2D communication.

Another suggestion that emerged from this study is that there is a negative stigma

associated with individuals who have T2D, and this stigma hinders affected T2D individuals from

wanting to disclose their diagnosis with T2D or talk about T2D with others. This participant

postulated that if society were more informed and took a less judgmental stand on their views

of individuals with T2D, then more affected individuals would be willing to talk about their

experiences with T2D. Future studies could target individuals affected with T2D and focus on

finding out whom in society, specifically, creates this negative environment for the affected

individuals (i.e. healthcare providers, family members, or the general public). This knowledge

could provide direction of who would be best to target with efforts to increase awareness and

sensitivity towards individuals with T2D.

A final consideration for health education is to understand how an individual’s

perception of the cause of T2D can influence how they communicate about T2D within their

families. We found discordance in the perceived cause and perceived risk of T2D. While many

respondents felt that the cause of T2D in their family was due to uncontrollable factors such as

genetics and ethnicity, they also perceived their unaffected relatives to be at-risk for T2D due to

lifestyle factors. Future research could include quantitative studies that look at these reported

differences between perceived cause and perceived risk of T2D in at-risk families, because

these differences could potentially be affecting communication about risk in families.

33

Limitations

Our study also aimed to identify racial/cultural differences in communication patterns

within at-risk families; however the only trend noted to have differences across populations

was support. For future studies, there is a need for larger samples to address racial/cultural

trends. A smaller sample size is expected with a qualitative design; however, this limits external

generalization of the findings. Also, qualitative studies cannot establish causality, so it cannot

be concluded that the variables developed in this study affect communication. There were

multiple interviewers, which could result in interviewer bias. Attempts to limit this bias were

made by training all interviewers in qualitative interviewing techniques, and having them

conduct practice interviews before collecting data.

This study had a majority of female participants, who tend to be more often involved in

communication over males. Future qualitative studies could investigate whether

communication variables change with a predominantly male population of affected T2D

participants. All families reported some level of communication about T2D, so families who are

not actively engaging in communication about T2D were not examined. Future studies could

target at-risk families who are not communicating about T2D to identify additional variables

that may be associated with a lack of communication. Finally, this study only presents the

perspectives of individuals affected with T2D. Future studies could examine similar themes

from the perspectives of unaffected individuals in families at-risk for T2D.

34

References

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2. Knowler, W.C., et al., Reduction in the incidence of type 2 diabetes with lifestyle intervention or metformin. N Engl J Med, 2002. 346(6): p. 393-403.

3. Tuomilehto, J., et al., Prevention of type 2 diabetes mellitus by changes in lifestyle among subjects with impaired glucose tolerance. N Engl J Med, 2001. 344(18): p. 1343-50.

4. Boyle, J.P., et al., Projection of the year 2050 burden of diabetes in the US adult population: dynamic modeling of incidence, mortality, and prediabetes prevalence. Popul Health Metr, 2010. 8: p. 29.

5. Valdez, R., et al., Family history and prevalence of diabetes in the US population: 6-year results from the National Health and Nutrition Examination Survey (NHANES, 1999 2004). Diabetes, 2007.

6. Harris, J.N., et al., Using a family systems approach to investigate cancer risk communication within melanoma families. Psychooncology, 2010. 19(10): p. 1102-11.

7. Harrison, T.A., et al., Family history of diabetes as a potential public health tool. Am J Prev Med, 2003. 24(2): p. 152-9.

8. Loescher, L.J., J.D. Crist, and L.A. Siaki, Perceived intrafamily melanoma risk communication. Cancer Nurs, 2009. 32(3): p. 203-10.

9. McCann, S., et al., Family communication, genetic testing and colonoscopy screening in hereditary non-polyposis colon cancer: a qualitative study. Psychooncology, 2009. 18(11): p. 1208-15.

10. Yoon, P.W., et al., Can family history be used as a tool for public health and preventive medicine? Genet Med, 2002. 4(4): p. 304-10.

11. Qureshi, N. and J. Kai, Informing patients of familial diabetes mellitus risk: How do they respond? A cross-sectional survey. BMC Health Services Research, 2008. 8(37).

12. Pijl, M., et al., Impact of communication familial risk of diabetes on illness perceptions and self-reported behavioral outcomes. Diabetes Care, 2009. 32(4): p. 3.

13. Royak-Schaler, R., et al., Breast and colorectal cancer risk communication approaches with low-income African-American and Hispanic women: implications for healthcare providers. J Natl Med Assoc, 2004. 96(5): p. 598-608.

14. Whitford, D.L., H. McGee, and B. O'Sullivan, Reducing health risk in family members of patients with type 2 diabetes: views of first degree relatives. BMC Public Health, 2009. 9(455).

15. Patton, M.Q., Qualitative Evaluation and Research Methods. 2 ed1990, Newbury Park, CA: Sage Publications.

16. Ersig, A.L., et al., Explanations of Risk in Families Without Identified Mutations for Hereditary Nonpolyposis Colorectal Cancer. Journal of Nursing Scholarship, 2010. 42(2): p. 8.

17. Ayres, L., K. Kavanaugh, and K.A. Knafl, Within-Case and Across Case Approaches to Qualitative Data Analysis. Qualitative Health Research, 2003. 13(6): p. 13.

18. Landis, J.R. and G.G. Koch, The measurement of observer agreement for categorical data. Biometrics, 1977. 33(1): p. 159-74.

19. Patenaude, A.F., A.E. Guttmacher, and F.S. Collins, Genetic testing and psychology. New roles, new responsibilities. Am Psychol, 2002. 57(4): p. 271-82.

20. Waxler, J.L., et al., Genetic Counseling as a Tool for Type 2 Diabetes Prevention: A Genetic Counseling Framework for Common Polygenetic Disorders. J Genet Couns, 2012.

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21. Ashida, S., et al., Family Health History Communication Networks of Older Adults: Importance of Social Relationships and Disease Perceptions. Health Educ Behav, 2013.

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24. Koehly, L. and A. Loscalzo, Adolescent Obesity and Social Networks. Preventing Chronic Disease: Public Health Research, Practice and Policy, 2009. 6(3).

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Appendix A

Qualitative Interview Guide

For this portion of the study, I have some questions for you about Type II Diabetes. These questions are meant to be discussion-based: please be open and honest and feel free to share as much detail as you feel comfortable. There are no right or wrong answers, we just want to hear your perspective about diabetes, how it has impacted your life and who you talk to about diabetes. Just to remind you, the information that you provide will not be shared with your family members. In order for me to better remember what we discussed, the interview will be audio recorded. Do you give consent to participate in a recorded interview? 1. Can you start by telling me about your experiences with diabetes?

2. Tell me more about how diabetes has impacted your life?

3. How do you feel about diabetes?

4. Who in your family has diabetes?

a. What do you think causes diabetes in your family?

5. Who do you talk to about diabetes? a. If family members aren’t mentioned – Do you talk to any of your family members about

diabetes? b. What do you talk about related to diabetes? c. Are there family members who you don’t talk to about diabetes? Why? d. What are the challenges to talking with your family members about diabetes?

6. Do you think any of your family members are at risk of developing diabetes?

a. Why do you think they are at risk? b. If participant NOT diagnosed with diabetes – Do you think that you are at risk for developing

diabetes? Why?

7. What do you think could be done to help increase communication about diabetes within your family?

a. What do you think would work for another family?

8. What do you think could be done to help reduce the risk of developing diabetes (in family members)?

a. What do you think would work for another family?

9. Thank you for answering these questions. Is there anything else you think it is important for me to know about diabetes and your family?

37

Appendix B

Codebook

Domain: Cause Description: The cause of diabetes in the family.

Subdomain Descriptions Example

Ethnicity Affected T2D participant feels that ethnicity is cause of T2D in family.

“Um I guess its ethnic based. African Americans are more prone prone to it because some of the conditions they have like high blood pressure and obesity. “

Genetics cause Affected T2D participant feels that genetics is cause of T2D in family.

“Diabetes really doesn’t discriminate whether you’re big or not. If it’s in the blood line it’s a chance that you could get it.”

Genetics unsure Affected T2D participant feels that genetics might be cause of T2D in family.

“Oh, I don’t know. I’m thinking, I don’t know. I don’t know if it’s genetic…”

Lack of exercise cause Affected T2D participant feels that lack of exercise is cause of T2D in family.

“And I think some people are, by lifestyle, just more prone to it than others, particularly in the health and exercise area.”

Overweight cause Affected T2D participant feels that being overweight is cause of T2D in family.

“Well, I think my cause was being overweight…”

Poor diet cause Affected T2D participant feels that poor diet is cause of T2D in family.

“I would say poor eating habits because we’re obese, you know? I’d say poor eating habits”

Stress Affected T2D participant feels that stress is cause of T2D in family.

“I believe that that stress that that caused, that year-end stress caused me to not be a suspect anymore but be full blow diabetes.”

Domain: Family History Description: Individuals in the family who are affected with T2D.

Subdomain Description Example

Few affected individuals 2 or less T2D affected individuals in family

I: Ok, and you mentioned that no one else in your family has diabetes? P: Nope, not in mine.

Many affected individuals More than 2 T2D affected individuals in family

“Well, I think my mother had diabetes… And my grandmother, her mother, my mother’s mother

38

had diabetes. My nephew actually has diabetes…”

Domain: Diabetes Experience Description: Discussion about personal T2D experiences

Subdomain Description Example

Diagnosis Affected T2D participant explains how diagnosed with T2D

They told me when they drew the yearly blood or whatever, “Oh you’re diabetic now.”

Management Affected T2D participant explains personal management of T2D

“I pretty well started watchin’ what I ate and the amount, tryin’ to keep it under control then that way. I do eat things that I’m not supposed to, but what I do eat I think I eat in moderation.”

Medical complications Affected T2D participant explains his/her personal medical complications associated with T2D

“I feel like I know that it affects my kidneys, it affects my eyes, my extremities when it gets out of control”

Severe complications Affected T2D participant explains how family members with T2D suffered from severe complications of T2D

“I say that because my twin sister’s husband was diabetic and I watched him slowly deteriorate and he lost both his feet, then both his legs, then shortly after that he died.”

Domain: Emotional Experience Description: Emotions that are reportedly felt in relation to T2D

Subdomain Description Example

Anger/Frustration Affected T2D participant expresses feelings of anger/frustration towards T2D

Ok, so how do you feel about diabetes? P: I think it’s a pain. I mean I don’t like having it.

Empowerment Affected T2D participant feels empowered by action taken due to diabetes

“It impacted my life again I was saying I was at 263 pounds and I weight 190 now and I went from a size 22 down to a 14.”

Lack of control Affected T2D participant expresses feeling a lack of control regarding experiences with T2D

“In general, when you’re havin’ a reaction, I hate it, because you have no control of your feelings.”

Sadness Affected T2D participant expresses feelings of sadness or depression related to T2D

“Um, it really depresses me, with my uh type II diabetes to where a lot of things that I used to do I can’t do anymore.”

Worry/Fear Affected T2D participant “I guess that’s what kind of

39

expresses feelings of worry or fear related to T2D

scared me when I found out I had it, because my father was just out of control.”

Domain: Financial Experience Description: Financial effects related to T2D

Subdomain Description Example

Healthcare Financial burden from healthcare costs

“I don’t test daily, mainly because of the costs of supplies, but I do check several times a week.”

Domain: Social Experience

Subdomain Description Example

Encouraging behaviors Affected T2D participant or unaffected family members engage in encouraging behaviors related to T2D

“But you know I try to encourage my sister anyways, we’re probably the closest out of my family. Ph, and you know we try to encourage each other about eating sweets and kinda watching your diet and uh make sure we’re taking the medications. You know I mean we try to encourage each other.”

Left out Affected T2D participant feels left out or limited socially because of T2D

“I guess you would say because you’re like dammit why can’t I have the same kind of food everybody else does?”

Share experiences Affected T2D participant or unaffected family members talk about their T2D experiences with one another

“What is it that you’re doing and how could you do better. Or what is it the things you’re doing that I should be doing. And we just talk about a little bit of everything.”

Support Affected T2D participant gives or receives support related to T2D from either T2D affected or unaffected family members

“We just talk to each other and keep each other from being depressed all the time.”

Domain: Barriers to Communication Description: Factors that prevent communication about T2D

Subdomain Description Example

Avoidance Unaffected family member intentionally avoids thoughts or

“She’s not willing to accept the conversation.”

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conversations about T2D

Can’t happen to me barrier Unaffected family member feels that diabetes can’t happen to them

“I just think they don’t think it could affect them like it’s affected me. Just because mommy got it or big grandma got it, that ain’t gonna happen to me.”

Distance Lack of communication between affected T2D participant and unaffected family member due to distance

“My family, I have a sister in Boston, Massachusetts. I have a brother in Charleston, Indiana and one in Louisville and one in Lexington. So it’s not like we’re centrally located where we can get together and talk.”

Lack of engagement Attempted discussion with unaffected family member, but the person doesn't give feedback or seem to listen

“My sister, though, I don’t talk a whole lot to her, she’s a somewhat introverted and basically she doesn’t really- it’s more of a one-sided conversation with her.”

Lack of salience Unaffected family member unwilling or unable to grasp seriousness of diabetes because he/she has no firsthand experience with the disease

“I guess they don’t take it as serious because they’re not a diabetic.”

Lack of understanding Unaffected family member would not understand due to age or mental capacity

I: Do you ever talk to her about t2d? P: No because I basically manages everything that goes on around her because she’s mentally handicapped. And some of the things she wouldn’t understand.

Lecturing Unaffected family member feels like he/she is being talked down to or preached to

“Yeah. They consider things when I say you need to stop smoking or you need to stop drinking, they feel like I’m preaching to them. And I’m not. “

No close bond No communication between affected T2D participant and unaffected family member because there is not a close bond between the individuals

“If it wasn’t somethin’ within the confines of the family, I don’t think it’s a subject that you approach, that people talk about.”

No perceived risk Don't talk with unaffected family member because that person

“I brought it up once before and she told me that she’s not

41

doesn't feel like there is a risk worried about these t2d and that’s why I don’t talk to her about it anymore.”

Offensive Unaffected family member feels attacked or offended when attempts to discuss T2D are made

“You know, like it’s a personal attack against them if you try to talk about it.”

Too busy Unaffected family member has too many other things going on, and doesn’t have time to talk about T2D

“D, like I said, is usually caught up in his own business and affairs that he has going on”

Unaffected T2D Don't talk to unaffected family member because they aren’t affected by T2D

“I don’t talk about it with my mom as much because my mom doesn’t have diabetes”

Domain: Communication Change Description: Ways suggested to increase T2D communication

Subdomain Description Example

Church Use church as a way to increase communication about T2D

“If it started in the churches and in the schools, then maybe we’re more aware of where it needs to be. Many people sitting in church now are older like myself. They learn the hard way that they have these ailments and these diseases. If the church took on as much emphasis of lifestyles as they do the teachings of God, then maybe we’d know that if we don’t take care of our bodies, they’re not going to take care of us. “

Education about T2D Having education about T2D and its related complications will help increase communication about T2D

“I would just, like I say I got into classes and I didn’t know anything about it but getting into those classes and listening to people talk about it, it shedded a lot of light onto my life, gave me a better understanding about being a diabetic, and if you’re not a diabetic it can shed light on you to know the signs of becoming a diabetic. I mean, I would recommend type 2 diabetic classes to anybody…”

Family gatherings Talking about T2D at a family gathering to increase

“Well I think it good for my family members to get together

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communication about T2D like around Thanksgiving or whatever on the days, times we do get together and we come up with some kind of forum, and come up with a discussion time or something you know, and discuss it.”

Family tree Drawing out a family tree or tracing family history to help increase communication about T2D

“And I did suggest to them that we do a health, uh a genealogical health chart, you know. Like, my father died of heart disease and mommy died of cancer, just put those links in there and send that to each of the families.”

No labeling Less negative labeling of people who have T2D would help increase communication

“I think if people didn’t judge others by thinking like that, you have this disease, so therefore I judge you as being fat and lazy or whatever, if they just said, “Yeah, that’s what you have, OK, how do you deal with it? What do you do?” it would be different.”

Threshold increase A significant event, such as a health crisis can help increase communication

“Anything short of me becoming critically ill or losing a limb, no.”

Domain: Communication Topics Description: Topics discussed related to T2D

Subdomain Description Example

Diet Discussion of diet related to T2D between affected and/or unaffected T2D family members

“We talked about the types of food that we would purchase, checking our sugar levels, and how we prepare our foods, what portions we do.”

Exercise Discussion of exercise related to T2D between affected and/or unaffected T2D family members

“When I was first diagnosed I guess we spent a lot of time talking about treatment, and diet and exercise and how to control it and the effects of diabetes.”

Explain personal symptoms Explaining personal symptoms related to T2D between affected and/or unaffected T2D family members

“Like I said, *** is my younger brother and I try to tell him if I’m feeling bad and why I’m feeling bad or why I think I’m feeling bad.”

Family history Discussion of family history “And I mean you know we talk

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related to T2D between affected and/or unaffected T2D family members

about the past and things that happened in the past with our family who’s had diabetes.”

Medical issues Discussion of medical issues related to T2D between affected and/or unaffected T2D family members

“My brother F was diagnosed uh quite a while back and he’s got some neuropathy going on and stuff also. And when we get together or I call him we talk about it.”

Medications Discussion of medications related to T2D between affected and/or unaffected T2D family members

“My aunt was actually on insulin, which I’m not, so basically she would just kind of go over some things that she thought was important with me so that I would not have to ever start using insulin.”

Risk Discussion of risk related to T2D between affected and/or unaffected T2D family members

“And I try to get him to feel differently about it, cause like I told him diabetes is nothing to play with.”

Domain: Facilitators of Communication Description: Factors that facilitate T2D communication

Subdomain Description Example

Close bond Affected T2D participant talks to an affected and/or unaffected family member about T2D because they share a close bond

“But you know I try to encourage my sister anyways, we’re probably the closest out of my family.”

Doctor Affected T2D participant talks to doctor about T2D

“I switched over to another doctor because he is a diabetic himself and I felt like he would understand better than the one I was going to. And he’s helped me a lot. He changed my meds and he was very good and he still is.”

Emergency preparation Affected T2D participant talks to affected or unaffected family member about T2D for emergency preparation

“I feel like if something happens to me I need to have somebody know what’s going on with me. To where if I have to go to the hospital they need to know what my concerns is and what my pains is and what my whatnots are.”

Family members Affected T2D participant talks to affected or unaffected family

“Who do I talk to? Most of the time when the conversation it

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members about T2D brought up, it’ll be between my wife and I and the older son.”

Post diagnosis Affected T2D participant talks to affected or unaffected family members about T2D because of recent T2D diagnosis

Ok. So do you talk to your family members often about t2d? P: Not really so much anymore. When I was first diagnosed it was a topic that we talked about a lot, and at this point we all kinda feel like it’s just a fact of life.

Prevention Affected T2D participant talks to unaffected family member about T2D to encourage prevention

“Now I do warn them about the bad side effects that can happen, so I give them pamphlets that I get all the time.”

Scare tactic Affected T2D participant talks to unaffected family member about T2D to try to scare person about T2D

“I don’t talk to my daughters about it. I do mention to them, “Ok, get that weight off of you. You know I’m diabetic, it runs through the family.” You know, I try to scare them up, my two daughters.”

Threshold Affected T2D participant talks to affected or unaffected family member about T2D because a significant event occurred

“So unless I was in the hospital facing something imminent, she wouldn’t want to hear about it, she wouldn’t want to talk about it.”

T2D affected Affected T2D participant talks to another T2D affected family member about T2D because person is T2D affected

“Because with my aunt, I talk to her all the time about being a diabetic, you know, because she can relate.”

Domain: Lack of Perceived Risk Description: Reasons for not feeling at risk for T2D

Subdomain Description Example

Can’t happen to me lack Affected T2D participant explains that he/she had no perceived risk of T2D because didn’t think T2D could happen to him/her

“I just never dreamt that I would get diabetes or that it would affect- you know, that me eating everything that I want would affect my health.”

Healthy lifestyle Affected T2D participant explains that he/she has no perceived risk of T2D in an unaffected family member because of healthy lifestyle

I: Why don’t you think she’s at risk? P: Because right now I’m managing her diet. I make sure she gets her exercise in. And I make sure she takes the medication that she’s supposed to take everyday, I make sure

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she takes it every day.

No genetics Affected T2D participant had no perceived risk of T2D because genetics was not thought of as cause

“Maybe I just didn’t know that it was hereditary, I mean that it was a possibility that somebody else in the family could have it because she had it.”

Domain: Risk Perception Family Description: Persons in family suspected to be at risk for T2D

Subdomain Description Example

FDR FDR at risk for T2D “Right, and she said to me, she says, “Well the doctor said I don’t have diabetes.” And I said, “No, you could be pre-diabetic.”

SDR SDR at risk for T2D “I think her feeding habits of her grandkids has led to the fact that now her grandson is being tested for diabetes.”

Domain: Risk Perception Why Description: Why family members are thought to be at risk for T2D

Subdomain Description Example

Alcohol risk Affected T2D participant perceives unaffected family member to be at risk for T2D because of alcohol

“Why do I think she’s at risk? She’s overweight, she doesn’t exercise, she doesn’t eat right and she drinks a lot. A lot.”

Genetics risk Affected T2D participant perceives unaffected family member to be at risk for T2D because of genetics

“Why do you think they’re at risk of developing diabetes? P: My daughter eats very very healthy. I think a lot of it is the genetics.”

Lack of exercise risk Affected T2D participant perceives unaffected family member to be at risk for T2D because of no exercise

“They don’t exercise, you know, they just- all the lifestyle choices of what they eat is just adding more weight to them, I guess.”

Overweight risk Affected T2D participant perceives unaffected family member to be at risk for T2D because overweight

“*** is 13 and he’s borderline obese. And if he’s borderline obese, that means he has the potential to be diabetic.”

Symptoms suggest diabetes Affected T2D participant perceives unaffected family member to be at risk for T2D because various physical manifestations

I: What kind of concerns do you have? P: Well I know he’s always saying that he’s tired. And I know he sweats a lot and be clammy in the hands. So I tells him you need to go to the doctor and

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make sure you don’t have diabetes like I do.

Poor diet risk Affected T2D participant perceives unaffected family member to be at risk for T2D because of poor diet

I: Why do you think they are at risk? P: It’s just their diet, the things they eat, and uh the way they live their life.

Domain: Risk Reduction Description: Ways suggested to reduce risk of T2D

Subdomain Description Example

Change lifestyle Can reduce risk of T2D in at-risk family by changing lifestyle

“I think that’s a—you’ve just got to make people think about what they’re doin’ and not just go through life without—just like runnin’ on autopilot.”

Increase knowledge Can reduce risk of T2D in at-risk family by increasing knowledge about T2D

“So you think it would be helpful in teaching younger generations about diabetes? P: Right because they know that there’s a genetic component and if you know you have the component, then you can- oh, what is it called…preventive training?”

Professional follow-up Can reduce risk of T2D in at-risk family by professionals following up more with T2D patients

“As far as explaining to a medical person what I think needs to be done from that aspect is: when the medical doctor tells you that you’re diabetic, they just give you a prescription and tell you to go to this class. But when you go to that class, there’s not ever much follow-up.”

School Can reduce risk of T2D in at-risk family by involving schools (diet, education)

“Get the healthy stuff in the schools”

Self-motivation Can reduce risk of T2D in at-risk family by being self-motivated with T2D reducing behaviors

“We’re our own worst enemy. If we don’t motivate ourselves, nobody is gonna motivate us.”

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Table 1: Inter-rater Reliability for each theme

Theme K-Value

Ethnicity 1

Genetics cause 0.94

Genetics Unsure 0.95

Lack of Exercise 1

Overweight cause 0.98

Poor Diet cause 0.98

Stress 1

Few affected individuals 0.95

Many affected individuals 0.99

Diagnosis 0.94

Management 0.93

Medical Complications 0.90

Severe Complications 0.97

Anger/Frustration 0.98

Empowerment 0.99

Lack of Control 0.88

Sadness 0.99

Worry/Fear 0.96

Healthcare 1

Encouraging behaviors 0.94

Left out 0.98

Share experiences 1

Support 0.92

Avoidance 0.72

Can’t happen to me barrier 1

Distance 0.99

Lack of engagement 1

Lack of salience 1

Lack of understanding 1

Lecturing 1

No close bond 0.98

No perceived risk 1

Offensive 1

Too busy 0.99

Unaffected T2D 1

Church 1

Education about T2D 0.91

Family gatherings 0.99

Family tree 1

No labeling 0.98

Threshold to increase 1

Diet 0.90

Exercise 1

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Explain personal symptoms 0.97

Family history 1

Medical issues 0.94

Medications 0.93

Risk 0.94

Close bond 0.97

Doctor 0.99

Emergency preparation 1

Family members 0.87

Post diagnosis 0.99

Prevention 0.86

Scare tactic 0.97

Threshold facilitate 1

T2D affected 0.90

Can’t happen to me lack 1

Healthy lifestyle 0.98

No genetics 1

FDR 0.95

SDR 0.98

Alcohol risk 0.97

Genetics risk 1

Lack of exercise risk 0.95

Overweight risk 0.91

Symptoms suggest diabetes 0.99

Poor diet risk 0.90

Change lifestyle 0.92

Increase knowledge 1

Professional follow-up 1

School 1

Self-motivation 0.96

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Table 2: Participant Characteristics

Characteristic Categories N (%)

Gender Male Female

5 (25) 15 (75)

Age 45 – 54 55 – 64 65 – 74 75 – 84

5 (25) 8 (40) 5 (25) 2 (10)

Race/Ethnicity Identification Caucasian, non – Appalachian African American Appalachian

7 (35) 7 (35) 6 (30)

Education High School Diploma GED Associate’s Degree Bachelor’s Degree Post Graduate Degree

4 (20) 1 (5) 7 (35) 5 (25) 3 (15)

Risk Category High risk Moderate risk Average risk

11 (55) 7 (35) 2 (10)

Income Less than $25,000 $25,001 – $50,000 $50,001 – $75,000 $75,001 – $100,000 Refused

7 (35) 5 (25) 6 (30) 1 (5) 1 (5)

Religion Catholic Protestant Baptist Jehovah’s Witness None Other

4 (20) 6 (30) 4 (20) 1 (5) 3 (15) 2 (10)

Marital Status Married Widowed Widower Separated Divorced Never Married

12 (60) 2 (10) 1 (5) 1 (5) 1 (5) 3 (15)

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Figure 1: Types and Flow of Communication

T2D Affected

Participants

Unaffected

Children Affected Adults

Unaffected

Adults

Commiserate experiences Support networks T2D management