Social Networking and Understanding Alcohol-Associated Risk for People with Type 1 Diabetes: Friend or Foe?

Abstract

Background:

Online communication has become popular in recent years, especially for young people. Limited research exists into how people with type 1 diabetes mellitus (T1DM) discuss risks about diabetes. Alcohol use by people with T1DM, as in the rest of society, is common and may adversely affect diabetes management. This study reviewed the literature on social networking as a communication tool and conducted a systematic search of social networking sites to determine whether people with T1DM use them to discuss risks associated with diabetes and alcohol consumption.

Materials and Methods:

Systematic literature review was performed followed by an Internet search and forum identification relating to T1DM and alcohol. Qualitative coding and thematic analysis of publicly available data retrieved from social networking sites were undertaken.

Results:

In the literature review, 292 articles were identified, of which six met the inclusion criteria. Widespread use of social media for medical advice pertaining to diabetes was reported. The quality and safety of online advice were reported as variable. Ten Web sites with 247 individual postings about alcohol and diabetes were selected for analysis, which revealed six themes ranging from safety and seeking and provision of advice to wider views about behaviors, opinions, and experiences of people with T1DM and alcohol. No specific professional health information was identified on any sites, and inaccurate information was common.

Conclusions:

Online resources are used by people with T1DM to find information about diabetes and alcohol consumption. Easily signposted and accessible professional online resources would ensure people can access appropriate advice to minimize risks of alcohol use.

Introduction

O ver recent years, there has been a shift in the way that people communicate, with an exponential increase in the number of online forums and social networking sites.¹ A national survey in 2009 reported 73% of teenagers who use the Internet use social networking sites, an increase from 55% 3 years earlier.² The popularity and use of social networking and social media are growing with new technologies, such as Facebook, Twitter, and mobile devices, providing opportunities for mobile and immediate communication. It is claimed that one in every 13 people on Earth has a Facebook login³ and that 43% of the United Kingdom population use this communication medium⁴; this is particularly popular in the adolescent age group.^4

–7 Nearly half of European 11–16 year olds would rather communicate via the Internet than face to face.⁸ Furthermore, people in this age group are more likely to express honest thoughts and opinions when communicating online than in person.^8,9 Increasing numbers of people seek out health information online rather than more traditional sources despite being unable to verify the reliability of the information, its provenance, or underlying clinical evidence.^5,10

Alcohol is consumed in many cultures as a positive social activity and is the most commonly used intoxicating substance worldwide.¹¹ However, it is associated with numerous complications if overconsumed, and in many countries there is a binge drinking culture, particularly affecting young adults, who consider it socially acceptable to drink large amounts of alcohol.^11,12 The potential for and severity of harm associated with alcohol use are higher in people with diabetes than in the general population; in addition to the range of physical, psychological, and social harms experienced by the general population, there are specific effects of alcohol on diabetes and glycemic control. Alcohol can directly affect glucose control through its effects on hepatic glucose output, leading to glucose lability, hypoglycemia, and ketoacidosis.^13
–15

As type 1 diabetes mellitus (T1DM) is a complex disease that requires sustained effort by individuals to maintain optimal blood glucose control, people may not want to identify themselves as having diabetes to their friends for a variety of reasons, including social stigma, and so people with T1DM may use the Internet to seek support from their peers and to discuss their condition.² The Internet provides a seemingly safe haven for anonymous communication.¹⁶ The overall aims of this project were (1) to review the existing literature in this area and to conduct a systematic search of the Internet to identify which social networking Web sites and public forums are being used by people with T1DM and (2) to conduct thematic content analysis of these sites to identify discussions, expressed beliefs, and any risk minimization strategies described, associated with the consumption of alcohol and its impact on diabetes control.

Materials and Methods

Systematic review of the literature

The systematic review included a search of MEDLINE, EMBASE, PubMed, and The Cochrane Library. The Diabetes UK Web site was searched for references to alcohol recommendations. Four inclusion criteria were required: (1) studies including participants <25 years old; (2) relevant to participants with T1DM; (3) social networking must be used; and (4) studies must be published in English-language journals. Search terms used were “type 1 diabetes” (including “insulin dependent diabetes” or “type 1 diabetes mellitus”), “young adult,” “alcohol,” and “social networking.” Studies were excluded if they did not meet all four of the required inclusion criteria. Data in the articles that met the inclusion criteria were reviewed and synthesized.

Analysis of relevant social networking sites

Social networking is defined as “a dedicated website or other application which enables users to communicate with each other by posting information, comments, messages, images etc.”¹⁷ The second phase of the research identified relevant social networking Web sites based on the number of threads containing discussions about alcohol and diabetes. Ethics approval for the study was obtained from the University of Southampton (ERGO reference number 802) prior to identification of potential social networking sites. Web sites were selected based on the number of conversations regarding alcohol and diabetes, their frequency of use, and specific content of discussions pertaining to alcohol and/or diabetes. As the aim of the study was to gain an understanding of the range of discussions about diabetes and alcohol, we included the 10 social networking sites with the highest number of conversation threads relevant to diabetes and alcohol. We looked at other related Web sites but found that no new themes were emerging. Individual conversations were scrutinized to identify any specifically applicable information about blood glucose control when consuming alcohol.

Networking sites were logged, and all posts were anonymized with unique identifiers applied to individual Web users. The data collection period lasted for 3 months: from October 20, 2011 until January 29, 2012. We undertook a thematic analysis of these publicly available conversations using a form of framework analysis¹⁸ to analyze the data systematically and identify expressed beliefs and risk reduction strategies, while searching for methods people described for keeping their glucose concentration under control when consuming alcohol. All conversations were coded, and these codes were then abstracted to form emerging themes. The concept of generalizability in qualitative analysis is aimed at identifying the range of possible responses within a sample and is not designed to make statements about the proportion of respondents on any particular theme. This makes it ideal for an exploratory study that is attempting to define a new area of research and understand the nature of communication about diabetes and alcohol.

The data were read repeatedly to develop a coding framework, from which the key themes were identified. Six key themes are presented below.

Results

Systematic literature review (Table 1)

The initial search identified 292 articles, of which 257 were excluded at abstract screening. Thirty-five articles were scrutinized in full text, of which six met the inclusion criteria and are summarized below.

Table 1.

Results of Systematic Literature Review

Reference	Date of publication	Number of participants	Study design	Primary outcome	Other outcomes	Main results
Greene et al.⁹	2010	480	Qualitative	Qualitatively evaluate the content of communication in Facebook communities dedicated to diabetes	NA	• Patients with diabetes, their family, and friends share personal information about their diabetes via Facebook, They also use it to ask for advice on diabetes and to receive emotional support.
						• 2/3 of posts included unsolicited sharing of diabetes management strategies.
						• 65.7% of people posted providing information.
						• 28.8% of people posted in order to provide support.
						• 26.7% of posts were advertisements.
Shaw and Johnson¹⁹	2011	57	Cross-sectional study	Gaining information about participants' diabetes and their Internet use and online social networking use	Analysis of types of health information sought online and online health-seeking behaviors	• People with diabetes are willing to utilize resources online in order to gain information about their diabetes.
						• Approximately half of the diabetes participants in this study use social networking sites regularly.
						• 86% of participants said that they would use the Internet to search for health information.
						• 82.1% of participants said that they would use the Internet to search for information relating to diabetes.
						• 59.6% of participants had an online social network profile.
						• 49.1% of participants reported using social networking sites on a daily basis.
Weitzman et al.²⁰	2011	—	Observational study	To foster informed decision making about health social networking by patients and clinicians	NA	• The quality of content of diabetes-related online social networks has much room for improvement.
						• Advertisements for unfounded “cures” for diabetes were found on 3/10 sites.
						• Misinformation was found on 4/10 of the diabetes-related online social networks.
Chomutare et al.²¹	2011	—	Literature review	Study of salient features of mobile applications for diabetes care	Evaluate what is included in these mobile applications	• Mobile phone applications about diabetes have increased by more than 400% in the past 2 years.
						• 17% of these applications had social media functions.
						• They found that the four most common features of the applications were:
						∘ Insulin and medication recording (62%)
						∘ Data export and communication (60%)
						∘ Diet recording (47%)
						∘ Weight management (43%)
Sparud-Lundin et al.¹⁰	2011	105	Web-based survey	Evaluation of childbearing experience of 105 women with type 1 diabetes	Evaluation of how much the study population uses the Internet for health information and their use of social media sites	• 79% of women included in the study searched the Internet for information on their diabetes, with 38% reporting doing this daily.
						• 50% of the women said that they were active participants in online social networking sites.
						• 33% searched the Internet for information on diabetes when they were first diagnosed.
						• 66% searched for information on diabetes in relation to childbearing.
Bosslet et al.²²	2011	3012	National survey	Quantify the use of online social networks among physicians and physicians-in-training	Quantify the extent of patient–doctor interactions within online social networks	• Many ethical issues arise from communication between doctors and patients through online social networks.
						• A significant proportion of physicians received “friend requests” from patients on online social networks.
						• 34% of physicians reported receiving a “friend request” from a patient.
						• 48.7% of respondents were pessimistic about the potential for online social networks to improve doctor–patient relationships.
						• 79% of respondents were worried about the implications this would cause in maintaining patient confidentiality.

NA, not available.

A qualitative study (Greene et al.⁹)

A qualitative evaluation of communication on Facebook identified the 15 largest groups on Facebook that focused on diabetes management and analyzed 690 comments from 480 different people.⁹ The posts were evaluated by two investigators using a thematic coding scheme and divided into five categories: information-providing posts, requests for information, demonstrations of support, obvious promotional messages, and irrelevant posts. The results showed that 65.7% of people provided information (the commonest category), 28.8% of people posted in order to provide support, 26.7% posted advertisements, 13.3% requested information, and only 3% of posts were irrelevant.

A cross-sectional study (Shaw and Johnson¹⁹)

Health information seeking and social media use on the Internet was explored by recruiting 57 people with diabetes living in suburban and rural Southeastern United States using flyer advertisements in primary care clinics and libraries between June and October 2009.¹⁹ Participants who met the inclusion criteria completed a survey asking about their diabetes and their Internet and social networking use and that tried to assess their readiness to discuss health topics online. The results showed that the majority (86%) of participants would use the Internet to search for information on health, and diabetes in particular (82.1%). Of the 59.6% of participants who had an online profile, 49.1% visited online social networking sites on a daily basis.

An observation study (Weitzman et al.²⁰)

The quality and safety of diabetes-related online social networks were scrutinized in a further study, where only five of the 10 diabetes-related online social networks adhered to diabetes science and clinical practice recommendations.²⁰ Misinformation about diabetes was found on four of the 10 moderated sites, highlighting the need to improve the quality and safety of information provided.

A literature review (Chomutare et al.²¹)

Chomutare et al.²¹ explored the fourfold increase in number and popularity of diabetes-related mobile phone applications (apps) between July 2009 and February 2011. The integration of social media functions into these apps was explored, with 17% (range, 0–31%) having such functionality. These provided a simple link to popular online social network sites, such as Facebook or Twitter, rather than having a functioning social network within the application.

A Web-based survey (Sparud-Lundin et al.¹⁰)

The Internet usage, needs, and expectations of Web-based information were studied in 105 Swedish-speaking childbearing women with T1DM who had given birth in one of two hospitals in the western region of Sweden during 2007–2009.¹⁰ Of the women, 79% used the Internet to seek information, with 38% doing this daily. The most popular sites visited for communication were social Web sites, with 50% of women claiming that they were active participants. Thirty-three percent of women searched for information concerning diabetes when they were first diagnosed, and 66% searched in relation to childbearing. The commonest diabetes-related topic (70.7%) was pregnancy and parenthood.

A national survey (Bosslet et al.²²)

A further study reported that 34% of physicians had received a “friend request” from patients in online social networks and concluded that patients are more open and happy to communicate with their physicians online than their physicians are.²² The majority of physicians in this study thought of interaction with patients through online social networks sites as “ethically unacceptable.”

Internet survey of Web sites and forums for diabetes

Information about the Web sites used in this study is given in Table 2. These Web sites contained postings from 247 different participants. Communication regarding glycemic control and the effect of alcohol on this was common, with people both seeking information and offering advice. It seems that this was, at least in part, driven by the concerns about the long-term complications among this primarily younger group of people with diabetes. Posts were coded as described above, and six distinct themes were identified: information seeking, concerns regarding safety in relation to diabetes, previous experiences of people with diabetes, practical advice offered, attempts to explain the mechanism of action of alcohol in people with diabetes, and general recommendations and opinions from people. Several posts included material that was coded for more than one theme.

Table 2.

Brief Description of Included Web Sites

URL	Description
www.diabetes.co.uk/diabetes-forum	The most used site with threads specific to all types of diabetes and its management
http://diabetes-support.org.uk/diabetesforum/	Generic discussion forum for “better health and lifestyles” in diabetes
www.youthhealthtalk.org/Diabetes_type_1_in_young_people/Topic/1526	A forum for young people affected by type 1 diabetes; where people can share information about issues such as alcohol
www.diabetessupport.co.uk/boards	A Web site offering support, information, and an update on current issues for all people with diabetes
http://juvenation.org/juvenation_forums/daily_living/f/135/t/14509.aspx	Juvenile Diabetes Research Foundation–sponsored community for young people with diabetes
http://forums.childrenwithdiabetes.com	Forum for children, parents, and families living with diabetes, providing a global platform for information sharing
www.diabetesforum.com/diabetes-complications/6019-type-1-diabetics-alcohol.html	A forum for people to discuss their experiences with diabetes-related complications
www.diabetesdaily.com/forum/type-1-diabetes	A forum for people with type 1 diabetes, discussing how their diabetes affects their everyday lives
www.diabetesfiles.com/forums	A diabetes-specific chat-room style forum
www.healthboards.com/boards	A general health discussion forum, including threads on diabetes and alcohol consumption

Theme 1: information seeking

Information seeking about diabetes and the effect of alcohol was common, with particular reference to glucose monitoring and management. These tended to be posted as direct questions in search of a reply. Examples included:

• 144: “I have a question…why is it more risky for people with Type 1 diabetes to drink alcohol than people without?”

• 119: “When you go out with friends, how frequently do you check your blood glucose levels and how much insulin do you take, and how do you avoid going hypo?”

• 128: “Hi everyone, I just wanted to ask how you control your blood glucose levels when drinking alcohol and what quantities you drink?”

• 199: “Hi, I just wanted to ask people if they had any tips on how to keep blood glucose levels normal when drinking alcohol? What types of drinks do you have? What types of food do you eat before drinking?”

Theme 2: concerns regarding safety in relation to diabetes

Young people with diabetes appear to worry often about the effect alcohol has on the diabetes control of themselves and others and about the impact it might have in the long run, as detailed in the following examples:

• 119: “I am 21. I thought that I would be having the time of my life right now. But having diabetes makes me incredibly anxious about going out drinking. It has even made me miss nights out as I'm too worried about going hypo.”

• 141: “How will drinking affect him in the long run? I am getting concerned about his habits. He already has neuropathy, has lost hair on his lower legs and has numbness over his feet.”

• 150: “In my opinion, the trouble with alcohol is that the signs of being drunk and going hypo are similar.”

• 157: “I've just come back to uni and I am really scared about drinking again.”

• 161: “My doctor said to me that either I could give up alcohol and control my blood glucose levels or she would sign my death certificate.”

Theme 3: previous experiences of people with diabetes

Another distinct category of posts related to the sharing of experiences of diabetes and alcohol consumption, for example:

• 004: “In my experience, alcohol on its own will cause a drop in your blood glucose. Even wine (which I occasionally have at home) does this.”

• 006: “I ensure to eat something and make sure that my blood glucose level is slightly high during the night, about 10–13.”

• 021: “I drink nearly every day and I find that it helps to control my sugar levels. When I don't drink, my levels run high.”

• 025: “My boyfriend is very helpful. When he is aware of me getting drunk he stops drinking in order to be able to look after me. This has worked so far.”

Theme 4: practical advice offered

In response to the requests for information there was a range of practical advice offered, with no way for the naive reader to differentiate what was helpful and what not, for example.:

• 007: “All I want to say is you need to check your blood glucose during the night so that you can see what effect the alcohol is having on your blood glucose and act accordingly.”

• 011: “My advice would be to ensure that you eat before and whilst drinking alcohol and then to test your levels before bed.”

• 018: “When I have a binge (which sometimes can't be avoided), I eat something containing carbohydrates (such as a bag of chips), which stops me from going hypo during the night.”

• 012: “I think that a Mars bar is the best thing to eat of an evening.”

Theme 5: mechanism of action

Some of the information offered about the mechanism of action of alcohol in people with diabetes was confused, but some was more accurate; again, the difficulty for a visitor to the site is in knowing which is which. Examples below illustrate this point:

• 001: “There is something called ethaline in alcohol which makes you drunk. I think that there is a reaction and it requires something to dissolve.”

• 006: “Alcohol stops glycogen release from the liver. This causes low blood glucose…when you are drunk glucagon doesn't work.”

• 017: “Cabernet Sauvignon, Shiraz and Rioja all have a small amount of sugar. Alcohol lowers blood sugar. This is because it stops the liver from making sugar.”

Theme 6: general recommendations and opinions from people with diabetes

Several recommendations and opinions were offered, for example:

• 023: “Avoid getting drunk, as you act similarly when drunk and hypo.”

• 138: “I have seen people who have suffered irreparable damage from going hypo. Don't get drunk.”

• 167: “You want to be cautious when drinking, as you can fall asleep and drop into a coma. My advice would be to make sure you are with someone who will call you to make sure that you are alright.”

• 008: “Excessive alcohol consumption is bad for anyone. A little bit is alright. You need to be sure of how alcohol affects your blood glucose levels.”

• 165: “Young people with type 1 diabetes have a different view of the world. I found that friends stopped asking me out to things.”

Discussion

The aims of this study were (1) to review the existing literature and to conduct a systematic search of the Internet to identify which social networking Web sites and public forums are being used by people with T1DM and (2) to conduct thematic content analysis of these sites. Social networking media is more commonly used by younger adults.² Results from the literature review indicate that health information and advice are commonly sought online but highlight several concerns regarding the accuracy and reliability of such data.^{9,10,19

–22} Furthermore, the results of the Internet search indicate that young people are looking for information online because of worries about the effects of alcohol. In return, it appears that young people are responding to these requests for information by providing advice; however, it is clear that some of the advice is inaccurate and potentially harmful. Moreover, some of the comments are judgmental and go beyond the effect of alcohol on diabetes control and into the realms of whether or not an individual with T1DM should be drinking alcohol at all.

Alcohol plays a central role in youth culture in many countries, with binge drinking a particular public health problem. Young people with T1DM are not significantly different in their social outlook from their peers.¹² Binge drinking is more dangerous for people with diabetes because of the increased risk of both severe hyperglycemia and hypoglycemia. With alcohol consumption being an integral part of social activity, young people with T1DM face the challenge of ensuring appropriate self-management tasks while fitting in socially.

It is unclear whether young people feel unable to ask for advice about alcohol, or whether appropriate medical advice is routinely available within the outpatient clinic environment. However, in addition to these traditional healthcare settings, professionals may be well placed to help provide accurate advice via greater engagement with social media and connect with young people in a setting where they feel most comfortable to discuss issues such as these.^9,10

The search for health advice via social media is increasingly popular; however, confused and scientifically inaccurate information on these forums is particularly problematic among the young people because this age group can be more easily influenced by the opinions of others.¹²

It is impossible to verify the accuracy of posted information, as the honesty, integrity, or biases of the poster are masked. It is also impossible to determine whether advice is given as a result of personal opinion, experience, or believed medical advice. There is a clear opportunity for healthcare professionals to help to improve the accuracy of health information on social networking sites by engaging with young people via this medium and improving their levels of health literacy in this area. This could help prevent unnecessary episodes of hypo- or hyperglycemia and admission to the hospital.

The study is limited in that the search was not exhaustive; however, every effort was made to include as many relevant forum and social network conversations regarding T1DM as possible. We used a systematic search and qualitative methodological approach to explore the extent and content of communication and use of social media; however, in future research a detailed framework analysis may be appropriate with in-depth semistructured interviews. Finally, the age of contributors or their disease status could not be verified because of the anonymity provided by social media making verification of these details impossible. Future research should consider these limitations.

In summary, the findings from this study show that young people with T1DM are communicating via social media about their diabetes and are actively seeking advice on how to minimize the risks associated with alcohol consumption. There is a real opportunity to harness the power of social networking sites to provide appropriate medical information to help people drink alcohol safely. Further research is required to determine the health literacy of young adults with T1DM and identify the behaviors used to minimize the risks of alcohol on diabetes control. Optimal ways for healthcare professionals to engage with this communication medium and provide innovative support should be considered and explored.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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