Mothers’ Perceptions of Family Health History and an Online, Parent-Generated Family Health History Tool

Abstract

Family health history (FHH) can identify families at increased risk for disease.

Purpose.

To learn mothers’ (1) perceptions of the benefits of FHH and (2) willingness to complete a FHH tool, My Family Health Portrait (MFHP).

Methods.

Qualitative in-depth interviews were conducted with mothers recruited through Cincinnati Children’s Hospital. Deductive and inductive codes were developed.

Results.

A total of 25 mothers were interviewed. Perceived benefits included keeping the pediatrician informed (n = 12; 48%) and preventive screenings recommended based on FHH (n = 10; 40%). Participants had positive impressions of MFHP and felt that it was user-friendly (n = 17; 68%). Lack of FHH knowledge was the most common challenge to completing MFHP, but most respondents stated that they would be able to complete MFHP prior to their child’s medical appointment (n = 23; 92%).

Conclusion.

Mothers are interested in and may be motivated to complete a parent-generated FHH prior to a pediatric appointment. Future research should focus on FHH implementation in practice.

Introduction

Family health history (FHH) is used by health care providers to identify and communicate with families and individuals at increased risk for developing disease. Having a first-degree relative with a common chronic disease can increase one’s risk of developing that disease from 2- to 5-fold.¹ From a clinical standpoint, collection of FHH can benefit patients through targeted risk analysis, education, and interventions.^1,2

The Surgeon General initiated a FHH campaign in 2004, which encouraged families to collect their FHH using a public Web-based tool called My Family Health Portrait (MFHP) and communicate it to their provider.^3,4 MFHP allows users to complete their FHH in a stepwise process and presents the entered information in both a pedigree and a chart format. The pedigree shows each condition entered. The chart has columns for 6 diseases (stroke, diabetes, heart disease, ovarian cancer, breast cancer, and colon cancer) and a seventh for additional information entered. Users select conditions from a drop-down menu of health conditions grouped into 17 categories that are further divided into subcategories (see the appendix). The pediatric setting may be an ideal place to collect a parent-generated FHH because children have frequent pediatric visits.^5-11 Additionally, health habits are best learned at a young age,^2,7-9 and parents are more likely to make positive lifestyle choices for their children than themselves.^5,6,8,11

Pediatricians’ perspectives of parent-generated FHH have been explored,⁸ but this study is the first to focus on parents’ perceptions of the benefits of FHH as well as the feasibility of completing MFHP.

Methods

This study used a phenomenological approach, which allows for in-depth information to be gathered from a relatively small sample size and for analysis to be conducted on the developing patterns and relationships.^12,13 Human subjects’ approval was obtained from Cincinnati Children’s Hospital Medical Center (CCHMC) and the University of Cincinnati internal review boards.

Participants and Recruitment

Study participants were recruited through the Clinical Trials Office at CCHMC through posted flyers and mailers sent to more than 1500 people who expressed interest in research studies at CCHMC. Interviews were conducted at CCHMC or by phone. Although recruitment materials targeted “parents” of children younger than 18 years, only mothers responded and agreed to participate. Inclusion criteria included having at least 1 child younger than 18 years and access to the Internet for the phone interviews. A computer with Internet access was provided for interviews conducted at CCHMC.

Protocol

All interviews were conducted, audiotaped, and transcribed by KAB. Informed consent was obtained. The interview guide was piloted on a convenience sample of 3 parents for face validity and comprehension. The first section focused on assessing parents’ current perceptions, understanding, and prior use of FHH within a pediatric setting. Respondents were then introduced to MFHP, asked to spend 15 minutes completing it for one of their children, and then asked to describe their impressions of MFHP. At the end of the interview, participants completed a brief demographic questionnaire. Participants received a CD-ROM with their completed FHH and a packet of FHH information. Interviews lasted 20 to 60 minutes.

Data Analysis

A codebook was created to keep track of emergent themes and subthemes. Themes were developed using deductive codes based on predetermined interview questions and inductive codes based on interviewee responses. All transcripts were coded by KAB. A second coder independently coded 20% of randomly selected transcripts, and interrater reliability was determined using Cohen’s κ. A κ value above 0.60 indicated substantial agreement between coders.¹² Any discrepancies were resolved through consensus. The second coder reviewed all remaining transcripts for consistency in coding. Coded data were organized using ATLAS.ti,¹⁴ a qualitative analysis software program. No new themes emerged after 25 interviews, and recruitment was stopped.

Results

Demographics

Of the 46 people who initially showed interest in the study, 25 consented and completed the interview; 24 interviews were in-person interviews, and 1 was conducted by telephone. All participants were female; 12 were African American, 9 Caucasian, 2 Asian-Indian, and 2 Hispanic. The majority of the women were married (n = 14). Of the 22 women who provided their education level, half had received a 4-year college education or higher (n = 11), 5 had some college, 5 had a high school diploma or GED, and 1 was currently in high school.

Only 2 of 26 codes required retraining based on low κ values. After retraining, the κ values were above 0.60, meeting substantial agreement.

Emergent themes were grouped into 7 different categories: mothers’ previous experience with FHH, communicating FHH in a pediatric setting, positive views of MFHP, challenges with and recommendations for MFHP, use of MFHP, completion of MFHP, and health benefits of MFHP.

Mothers’ Previous Experience With FHH

Pediatric experience.

In all, 16 mothers reported talking to their pediatrician about health problems that ran in their family (64%) such as a FHH of heart disease or high blood pressure. Three participants discussed a personal or family diagnosis with their child’s pediatrician with the hope of disease prevention for their child. One mother felt that her child’s symptoms of depression were taken more seriously after revealing a family history of depression:

I had to reveal that I suffered from depression a long time ago, and my mother had it too. So that really helped them to . . . make a decision that is something we need to address and helped the doctors realize, ok, this isn’t just a passing thing.

T19

Pediatric recommendations.

In all, 9 mothers (36%) stated that a pediatrician provided FHH-based medical management recommendations, such as recommending a physical therapy evaluation for a child with joint laxity and a strong FHH of joint problems. Others reported that pediatricians discussed early warning signs or symptoms of a disease noted in the FHH.

Communicating FHH in a Pediatric Setting

Benefits.

When asked, all mothers (n = 25) felt that there were benefits to communicating and sharing FHH with their child’s pediatrician. The most common benefit (n = 12) was to keep the pediatrician informed of FHH because knowledge could lead to preventive screenings (n = 10), lifestyle recommendations, or change of care (n = 4) for the child. Another benefit included parent education (n = 3) about a specific condition.

Concerns.

Most respondents, 88% (n = 22), had no concerns about sharing FHH with their child’s pediatrician. Two mothers who had changed pediatricians stated that they would not have felt comfortable sharing FHH or did not feel that the first pediatrician was receptive to FHH information. Another participant stated, “I think we have a great pediatrician. So I think that they listen, but I also know it’s hard to remember everything and how well it gets documented” (T1). One mother was concerned with insurance companies learning about their FHH.

Positive Views of MFHP

None of the 25 participants had previously seen or heard about MFHP. However, all participants (n = 25) had positive input about using MFHP (see Figure 1).

Figure 1. Positive views of My Family Health Portrait (MFHP)^a.

^aUser-friendly, MFHP was an easy program to use; Electronic Availability, MFHP was available on the computer; Visual Output, output at the end, including pedigree and chart; Increased Awareness, completing MFHP made parent think about similarities of diseases or ages of diagnosis in family; Pre-Set Conditions, diseases and conditions already programmed into MFHP; Age-Groupings, 10-year spans for age at diagnosis; “Add New” Option, MFHP allows users to free-text diseases/conditions not programmed in.

User-friendly.

Most felt that it was user-friendly (n = 17; 68%), and described it as “an easy program” (T2), “a nice way to go through your family history “(T21), and “easier to put stuff together than [they] thought it would be” (T24).

Electronic convenience.

In all, 11 participants felt that MFHP’s electronic format increased convenience (40%); 3 mothers specifically commented on how “it’s saved on a disc where you can use it and put in more information that you find as you know any other follow-up information that is given to you, you can put that on there” (T3), and another felt that “it could be really good for families that do have to move a lot, like military families or something like that” (T11).

Visual output.

There were several positive comments about the “tree-view” (T12) and chart (n = 8; 32%). Some really liked the chart “cause [they] can see that just being printed off and handed to a physician at that point. Meet the family, at a glance kind of thing” (T22). Others thought that the “pedigree is a really nice visual of your current family’s health” (T13). Overall, MFHP’s output is “graphic, you see everything at a glance” (T20).

Increased awareness.

Four (16%) felt that completing MFHP made them more aware of the health conditions and ages of onset/diagnosis in the family. One “was impressed that it just made [me] feel more in control over our diagnosis and our history and it makes me feel good knowing that I have this information for the doctors, but it also makes [me] feel like [I] don’t know enough” (T23).

Preset conditions.

To speed up MFHP completion, 3 mothers appreciated that “it had diseases already in there” (T15) and “walks you through it” (T23).

Age groupings.

One mother liked the 10-year spans for age of diagnosis and stated, “They made that easy” (T1). Another thought the 10-year ranges were helpful because exact age of onset may not be known.

“Add New” option.

Several mothers liked the preset conditions and diseases, but 2 participants also liked the fact that they could add new conditions. Mothers also appreciated that MFHP retained the added conditions and previously entered ages because it “made entering a little bit easier and faster” (T17).

Challenges Encountered With MFHP and Recommended Enhancements

Incomplete FHH information.

The most frequent challenge with MFHP was lack of FHH information about family members, often as a result of strained or limited relationships. In all, 20 participants (80%) mentioned that they did not know “exactly everything about everyone, but … [they] just know the basics” (T15). Some stated that their family was not open to discussing health issues. One participant said, “I’m not sure what they all have [be]cause I don’t communicate with them” (T4). Another stated, “I would use [MFHP] if I knew more about my family” (T5). In 4 interviews (16%), the issue of identifying pertinent health information in blended families was raised. For mothers who had children from more than 1 relationship, limited information may have been available from the child’s father’s side of the family. For example, some mothers were not sure about the relationship between a previous partner and his siblings (eg, if they were full-, half-, or step-siblings) and were not sure what health conditions those siblings might have had. In a few cases, participants skipped filling out their child’s father’s side of the family, limiting the potential benefits of collecting FHH.

To address the challenge of not knowing about the health of other family members, one mother thought a template that could be sent to the family would be helpful:

I know it was like pulling teeth to get my mother and father-in-law. They don’t want to tell their families, they don’t want to think that anything is wrong with them. So maybe if you said, hey I’m doing this for my [child], trying to get a good history, give them a reason, they’d be more likely to tell them that.

(T12)

Challenges with preset conditions.

In all, 8 mothers had challenges with the medical terminology used in MFHP: “Some people might know them by different terms than what the medical terminology might require” (T15). Some participants did not know hypertension was the same as high blood pressure (n = 6). Others had difficulty identifying a specific disease within the disease groupings (n = 5). Mothers looking for asthma did not know to look under “lung disease,” and mothers looking for attention-deficit/hyperactivity disorder did not know to look under “psychological disorders.” Some felt that MFHP was lacking diseases that they considered important, including obesity, cervical cancer, thyroid problems, and women’s health problems (miscarriages, endometriosis, human papilloma virus, and so on; n = 4). Some mothers assumed that if a condition was not listed in MFHP, such as allergies, it was not of interest to pediatricians. Also, 4 mothers had questions about which ages qualify as newborn, infancy, childhood, and adolescence. One participant asked if both present and past health concerns qualified as FHH and should be included in MFHP.

Suggestions were made to include more pediatric conditions such as allergies or recurrent ear infections (n = 2), more diseases on the “disease or condition” list and less under headings (n = 3), and more headings for other body systems (n = 2) and to put the list in alphabetical order under the “more options” tab to make it “more intuitive from a user perspective” (T1; n = 1). One suggested a group with “womens’ health issues and mens’ health issues” (T16), including gender-specific concerns (miscarriages, endometriosis, and so on) and STDs (n = 2).

Two participants suggested using nonmedical terminology next to medical terminology or having a pop-up with a short explanation of the disease:

I guess it would be good to kind of be more descriptive. … I didn’t know all these diseases and other than the names or whatever, should have had a little bit more information saying what it was, like if you move the mouse on it. … Saying ok, these are the symptoms or this is the disorder.

T18

Technical challenges.

Technical challenges included entering the birth date in a specific format (mm/dd/yyyy) and adding half-siblings or knowing that half-siblings were not supposed to be added at the “Add Immediate Family Members” page, which asks “How many (brothers, sisters, etc) do you have?” For others, it was hard to remember that their child was the proband. Mothers instinctively entered information for themselves instead of their child. One participant said she desired “a way that it could be worded so that if the parent of the child was doing it, so you’re not constantly like, you know I have to think of who” (T6). One participant had difficulty changing the proband. The one mother who had to save the information herself because she completed the interview over the phone thought that the saving process was challenging. Another mother identified the lack of interpretation of FHH as a technical challenge and said she would only use MFHP if it provided personalized risks.

Suggestions for technical enhancements included “auto-filling” race of other family members if the child is not biracial (n = 1) and more follow-up questions if certain conditions are entered. For example, if lung cancer is listed as a disease, MFHP should ask the user about smoking, or if diabetes is entered, MFHP should ask the user about obesity (n = 1). Three mothers wanted MFHP to include more than 3 generations. Two wanted MFHP to include dates for childhood illnesses, vaccines, surgeries, and so on, so their child’s health information could be kept in one place. Three mothers wanted MFHP to provide personalized disease risks:

I was hoping that somewhere in there … to say that, ok that this is in the family and this is the percentage of chance that somebody, it could be passed down … because what it is, it’s just giving you basically a table of what’s what … it’s the information you put in. You’re not getting anything out of it.

T18

Use of MFHP

When asked, most respondents reported that they would integrate MFHP into clinical care: 10 mothers (62%) said that they would take MFHP to a physician’s appointment (not all specified a pediatric appointment); 4 (25%) said that if an emergency arose, they would have it available in case FHH information was helpful to the health care providers. Others would either give it to their child when they got older (n = 5; 31%) or use it to educate their children to make healthier lifestyle choices (n = 1; 6%). Also, 9 participants (56%) said that they would keep MFHP up-to-date but did not specify what they would do with it.

Completion of MFHP

Nearly all (n = 23; 92%) responded that they would complete their child’s FHH and bring it to their child’s medical appointment if asked by the pediatrician. One mother would only complete it if mandatory, and another would only complete MFHP if it were available on a computer at the pediatrician’s office prior to being seen.

Health Benefits of MFHP

When asked if they thought collecting FHH information would be helpful in improving their child’s health, 16 mothers (76%) stated that they would use it to make their child more informed about his/her own health risks. Also, 5 mothers (24%) stated that they would use the information to make themselves (the mothers) more aware of the child’s health risks, and 4 (19%) hoped that collecting FHH would increase pediatrician awareness, facilitating preventive medicine and follow-up for the child.

Discussion

To our knowledge, this study is the first to focus on parents’ perceptions about utilization of FHH in a pediatric setting. In general, mothers responded positively to the idea of recording their FHH prior to a pediatric appointment. Participants suggested several ways they felt collecting FHH information could benefit their children, including being more informed about potential health risks and receiving pediatric recommendations for preventive care with screening and lifestyle recommendations. Previous research also suggests that parents are interested in FHH for the benefit of their children.¹¹ Participants in the current study discussed ways in which they planned to use FHH in the future; including bringing MFHP to a physician’s appointment and giving the FHH information to their children when they got older. Because participants worked with MFHP during the interviews, they also provided feedback regarding the online tool and provided several suggestions for overcoming challenges.

The benefits of introducing parent-generated FHHs in pediatric settings can only be realized if providers also perceive benefits to parent-generated FHHs. We were therefore interested in comparing the findings of our study with that of the study by Kanetzke et al,⁸ which evaluated 21 pediatric providers’ perceptions of parent-generated FHHs, including MFHP. Similarities and differences between the parents and pediatric providers are noted below.

Similarities

Lack of knowledge.

Both providers and mothers identified lack of knowledge about FHH as a barrier to parent-generated FHHs.⁸ Providers hypothesized that family dynamics and limited discussion of medical information between family members could limit the completeness of FHH.⁸ Also, 80% of mothers expressed limited knowledge about a family member’s health conditions at least once during the interview.

Potential health benefits.

Among providers, 9% thought that FHH collection could empower families to participate in their own health care,⁸ and 16% of mothers liked how MFHP made them more aware of health conditions and the ages of onset of health conditions in their family. Also, 40% of mothers stated that they would bring MFHP to a future physician appointment. Both mothers and providers felt that bringing parent-generated FHHs to pediatric appointments could lead to health recommendations based on FHH and positive lifestyle changes.⁸

Easy to update.

In all, 19% of pediatric providers⁸ and 36% of mothers believed that MFHP could be easily updated. The electronic nature of the tool increased the ease of updating for many mothers.

Visual output.

It was found that 76% of pediatric providers⁸ and 32% of mothers liked the pedigree and chart created by MFHP. Providers thought that the pedigree and chart “were organized and easy to read and that the pedigree provided a clear display of inheritance patterns,”⁸ and mothers described it as a way to “meet the family at a glance” (T22). Both mothers and providers thought that MFHP could increase the portability of FHH information.

Differences

Perceived barriers.

A main concern of providers was computer access and literacy.⁸ However, mothers did not identify computer access or literacy as a concern for themselves. Based on a 2012 survey of 2,253 adults ages 18 and older, the Pew Research Center estimates 86% of African Americans, 86% of Caucasians, and 80% of Hispanics use the Internet.15 Whereas ethnicity does not seem to significantly affect Internet use, educational attainment may. Only 61% of adults surveyed who had less than a high school education and 80% of adults who had a high school education used the Internet, compared with 94% and 97% of those who completed some college or completed college, respectively.¹⁵ Of the 25 mothers in our study, 6 did not have any college education, but they all stated that they would be able to complete MFHP outside the physician’s office and bring it to an upcoming appointment. In our study, 16 mothers (64%) reported at least some college education, and yet 9 struggled with either the preset categories or with discerning the type of information that was important in FHH. A previous study found that even after a FHH education session, only 67% of 100 women with less than a 4-year college degree felt that they would be able to find MFHP on the Internet, and only 50% felt that they could teach a family member how to use MFHP on the Internet,¹¹ suggesting that reliance on an Internetbased tool might be an issue for completing parent-generated FHHs.

Completion of FHH prior to pediatric appointment.

Only 38% of providers from the study by Kanetzke et al⁸ were optimistic that parents would complete MFHP prior to the office visit, compared with 92% of the mothers interviewed. Although most providers hypothesized limited computer or Internet access would be the biggest barrier to parent-generated FHHs,⁸ parents cited lack of knowledge about FHH as the biggest barrier. The reasons for the lack of knowledge included not being in contact with family members, not understanding the family relationships of children’s fathers, and viewing FHH as a private matter not to be shared. Similar challenges were reported in a previous study.¹¹ Although most mothers stated that they would be able to complete MFHP on their own and bring it to a pediatric appointment, several required assistance using MFHP, suggesting that it may not be as user-friendly as participants reported.

As anticipated by providers interviewed by Kanetzke et al,⁸ some mothers had difficulties with the medical terminology and the broad groupings in the drop-down menu of MFHP. Pop-ups with brief descriptions using nonmedical terminology, as suggested by some, would involve small changes to MFHP that could have a large positive impact. Participants wanted it to be easier to add other family members to their FHH, and 1 respondent suggested modifying MFHP, so the user could click on an individual and choose a relative to add in relation to the highlighted individual (eg, child, sibling, parent, and so on). Future revisions to MFHP should consider some of the recommendations presented by mothers in this study.

Limitations

The small sample size limits the generalization of our findings. Although we did not specifically target mothers, no fathers participated in the study. It is unknown if or how information from fathers might change our findings. Recruitment was limited to parents who showed an interest in the study, which may have created a response bias. Also, only parents who had access to the Internet could complete a telephone interview. Although the interviewer tried to remain neutral, social desirability response bias may have played a role in the positive responses when asked about future use of MFHP. Overall, our sample size represents a fairly educated group of mothers, which may not be representative of the general population. Participants were not asked about their experience with computers or current Internet use, which may have been useful in evaluating their future plans for MFHP.

Our findings suggest that mothers are receptive to collecting FHH information for use in a pediatric setting. They also perceive a benefit of sharing FHH with their child’s pediatrician to increase awareness and take measures to prevent disease. Previous studies suggest that pediatric providers are receptive to parent-generated FHHs. Therefore, intervention studies where MFHP is incorporated into pediatric practice are needed. Such intervention studies will need to address barriers to completing FHH information, such as lack of knowledge about FHH and challenges with MFHP. Future intervention studies will also need to determine feasibility, logistics, compatibility with EMR, how pediatricians use FHH information from MFHP (eg, screening, medical management, and so on), and whether parents make any recommended changes (or make changes on their own) to improve pediatric outcomes.

Appendix

Disease/Conditions Included in MFHP

Diseases/Conditions listed in bold are headers and will prompt the user to “please specify” from the list of disease options included in that category.

Cancer (more options), Bone, Brain, Breast, Colon, Esophageal, Gastric, Kidney, Leukemia, Liver, Lung, Muscle, Other cancer, Ovarian, Pancreatic, Prostate, Rectal, Skin, Thyroid, Unknown cancer, and Uterine cancer

Clotting Disorder (more options), Clotting Disorder, Deep Vein Thrombosis (DVT), Pulmonary Embolism, Unknown Clotting Disorder

Dementia/Alzheimer’s

Diabetes (more options), Diabetes, Gestational Diabetes, Type 1 Diabetes, Type 2 Diabetes, Unknown Diabetes

Gastrointestinal Disorder (more options), Colon Polyp, Crohn’s Disease, Familial Adenomatous Polyposis, Gastrointestinal Disorder, Irritable Bowel Syndrome, Lynch Syndrome/Hereditary Nonpolyposis Colon Cancer, Ulcerative Colitis, Unknown Gastrointestinal Disorder

Heart Disease (more options), Angina, Coronary Artery Disease, Heart Attack, Heart Disease, Unknown Heart Disease

High Cholesterol

Hypertension

Kidney Disease (more options), Cystic Kidney Disease, Diabetic Kidney Disease, Kidney Disease Present from Birth, Kidney Nephrosis, Nephritis, Nephrotic Syndrome, Other Kidney Disease, Unknown Kidney Disease

Lung Disease (more options), Asthma, COPD, Chronic Bronchitis, Chronic Lower Respiratory Disease, Emphysema, Influenza Pneumonia, Unknown Lung Disease

Osteoporosis

Psychological Disorder (more options), Anxiety, Attention Deficient Disorder-Hyperactivity, Autism, Bipolar Disorder, Dementia, Depression, Eating Disorder, Mental Disorder, Obsessive Compulsive Disorder, Panic Disorder, Personality Disorder, Post Traumatic Stress Disorder, Schizophrenia, Social Phobia, Unknown Psychological Disorder

Septicemia,

Stroke/Brain Attack,

Sudden Infant Death Syndrome,

Unknown Disease,

Other—Add New

This option allows for free-text to be entered into MFHP