DEPARTMENT
On the Web
Top Parent Blogs for Raising Children with Type 1 Diabetes Jennifer P. D’Auria, PhD, RN, CPNP KEY WORDS Blog, diabetes, parent
Diabetes is one of the most common chronic diseases in children and adolescents. As of June 2014, more than 200,000 youth younger than 20 years are reported to have been diagnosed with diabetes (Centers for Disease Control and Prevention, 2014). Type 1 diabetes (T1D), or insulin-dependent diabetes, is most often diagnosed in children, adolescents, and young adults. From 2001 to 2009, the prevalence of T1D is reported to have increased more than 19% among youth (Dabelia et al., 2014). Learning to live with T1D impacts the entire family, particularly parents who must share in the responsibility and accountability of managing this complex disease with their children.
Section Editor Jennifer P. D’Auria, PhD, RN, CPNP University of North Carolina School of Nursing Chapel Hill, North Carolina Jennifer P. D’Auria, Associate Professor, School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, NC. Conflicts of interest: None to report. Disclaimer: Reference to a Web site or application does not imply endorsement by the author or JPHC. Correspondence: Jennifer P. D’Auria, PhD, RN, CPNP, Carrington Hall, CB #7460, Chapel Hill, NC 27599; e-mail: [email protected]. edu. J Pediatr Health Care. (2014) 28, 568-571. 0891-5245/$36.00 Copyright Q 2014 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved. Published online August 20, 2014. http://dx.doi.org/10.1016/j.pedhc.2014.07.003
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Parents of children with T1D are encouraged to become involved in support groups and advocacy organizations to connect with others who share the same ‘‘highs and lows’’ of learning to live with T1D. This edition of On the Web will focus on blogs by parents of children living with T1D. Information about how to evaluate the quality of information on a health-related blog will also be addressed. ABOUT BLOGS The Web 2.0 movement focuses on social media technologies (e.g., wikis, podcasts, and Web logs [shortened term: blogs]) that give users the opportunity to collaborate openly with other Internet users. Blogs were one of the first social media tools to be developed that allowed users to share information and connect with each other. Blogs Blogs are best are best described as personal Web pages described as or journals updated personal Web on a regular basis by pages or journals an author (or blogger), with the goal of buildupdated on a ing a community of regular basis by an persons who share a author (or blogger), similar passion (Blog, 2014). Today, the with the goal of concept of blogging building a extends beyond a sincommunity of gle author to multiauthor blogs (teams of persons who share bloggers), as well as a similar passion. microblogging systems (e.g., Twitter and Tumblr; Blog, 2014). The focus of this article is primarily on single-author parent blogs focused on T1D; multi-author blogs and blogs maintained by major diabetes research and advocacy organizations are not included. Patients have commonly used blogs to share their perspectives, especially in relation to their experiences Journal of Pediatric Health Care
TABLE 1. Criteria and clues for evaluating the quality of blogs Criteria Authority Author(s) Sponsor (if any) Tone of the blog Active and up to date Life span of the blog Blogroll with links to other credible sites
Purpose (or focus) Title Purpose Disclosure(s) Intended audience Biases stated up front Disclaimer Design and management Professional appearance Theme fits the content Posts short, regular, and reverse chronological order Headings, subheadings, and related content easy to find Internal search engine Permanent links to specific posts Feedback mechanisms
Content and coverage Identifies intended audience Content theme is consistent Life span of blog Posts and comments thoughtful and respectful Reasonable interpretation of personal insights and experiences Creativity and currency of information Credible sources Disclaimer
Clues About (Me) page: Name, expertise, education, credentials, affiliations Contact page or details Googling name of the blog or author’s name Frequent posts and posting of new content (at least in the past 3-4 months) Other credible sites link to blog Active links to other credible sites Honors and awards Check URL or domain Interesting and clear title About (Me) page Posts reflect purpose of the blog Good writing tone, no typos or misspellings Link to disclaimer information Interesting title Clean, simple design with easy navigation Can post or link to posts easily No comment spam Categorizes comments and posts Archives of older content Links to sources active and verifiable May include feeds (e.g. Twitter, Facebook) Advertisements, if any, clearly labeled Freshness and frequency of posts and comments Dated posts written in an engaging writing style, appropriate reading level Free from typographical and grammatical errors Provides references to reputable types and sources of information Other credible sites link to blog (Google search) Honors and awards, reviews by others
Note. URL = uniform resource locator.
in living with a chronic illness (Grajales, Sheps, Ho, Novak-Lausher, & Eysenbach, 2014). However, limited research is available on the health-related benefits of blogs and other social media. The potential healthrelated benefits of blogs and other related social media technologies include increased opportunities for patient engagement and empowerment (eHEALTH INITIATIVE, 2014). EVALUATING BLOGS A healthy amount of skepticism should always be exercised when evaluating blogs or any Web site. Blogs commonly include the perspectives and experiences of a single individual (or blogger) and incorporate the ideas of the active readership that posts responses. As such, opinions and experiences expressed on a blog may not reflect information found in professional publication channels. Parents and health care professionals are challenged to determine exactly what constitutes the authority of a blogger, how to weigh personal www.jpedhc.org
opinion versus expert knowledge, and discern the informational context of blog content. Blog software tools (e.g., WordPress and Blogger) are freely available to help design and manage content on blogs. The essential characteristics of a blog include a title, regular entries or posts (in reverse chronological order), a body or main content area, an archive of earlier posts, a comments section, and links to other related sites (WordPress, n.d.). Links to an ‘‘about page’’ and a contact page should also be found on the blog, usually in the header or footer. An uncluttered design and ease of navigation are essential for a blog that hopes to attract lively conversation and an active readership. The need for full disclosure is of particular importance when using blogs for health-related issues (Brown, 2011). Key elements of disclosure that a person should look for on a blog include the author’s purpose and interests (or sponsorship) behind the blog and the author’s biography. A link to a disclaimer should also be November/December 2014
569
TABLE 2. Selected blogs by parents of children with type 1 diabetes Title
URL (http://)
Parent author (No. of children with T1D)
Arden’s Day BleedingFinger Candy Hearts D-Mom Death of a Pancreas Despite Diabetes DiabetesDad Our Diabetic Life Our Life With D The Princess and the Pump The Type 1 Game This is Caleb Welcome to Our Crazy, Happy Life! Welcome to the Sweet Life
www.ardensday.com bleedingfinger.com candyheartsblog.org www.d-mom.com www.deathofapancreas.com www.despitediabetes.com diabetesdad.org www.ourdiabeticlife.com www.ourlifewithd.com www.theprincessandthepump.com www.thetype1game.blogspot.com thisiscaleb.com crazy-happy-life.blogspot.com www.bridgetwrites.blogspot.com
Father (1) Father (2) Mother (1) Mother (1) Mother (1) Mother (1) Father (1) Mother (3) Mother (1) Mother (1) Father (1) Mother (1) Mother (1) Mother (1)
Note. T1D = Type 1 diabetes; URL = uniform resource locator.
easily found on the Web site. The disclaimer should include a statement that the information on the blog: (a) represents the personal opinions and experiences of the blogger, (b) may not be true for everyone’s situation, and (c) does not substitute for medical or professional advice. First impressions of a blog are an important step in the evaluation process. The title of the blog should be clearly related to what the blog is about. The user will need to read some of the posts to determine the tone of language used for the main content areas of the blog. It is also important to consider the situational context of a health-related blog. Is the blog focused on a specific phase in the chronic illness trajectory (e.g., initial, stable, unstable)? Does it use subheadings to categorize content related to different aspects of living with a chronic condition? For example, can a parent find entries related to building family routines with a newly diagnosed child or emotional support for the developmental challenges of adolescents with T1D? D’Auria (2010) provided a list of evaluative criteria and clues for evaluation of traditional Web sites. Table 1 is an adaptation of those criteria specific to blogs to serve as a beginning guide for parents and health professionals. PARENT BLOGS ABOUT T1D Although several blog search engines specialize in searching the content of blogs (e.g., Google Blog Search and Ask.com Blog Search), the quickest and most efficient way to search for relevant parent blogs focused on T1D is to conduct a simple Google search for ‘‘parent blog diabetes.’’ The search results will include links to the growing community of blogs written by parents detailing their journey of raising a child (or children) with T1D. A selected (far from exhaustive) list of parent blogs focused on life with T1D is provided in Table 2. In
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most cases, the title of the blog reflects an element of life that impacts raising a child with T1D. It is beyond the scope of this article to describe each of the blogs in the Table. However, a reader cannot help but be affected by the real-life perspectives shared by these parents, from the revisiting of the diagnostic moment to the parenting challenges during adolescence. Diabetes is a family affair, and these bloggers walk that difficult line of not letting diabetes run the lives of their child or family. Most of these blogs have a long life span such that the reader can follow the changing perspectives and challenges across the trajectory of the illness and the course of development. In fact, blogging about T1D is also a family affair. Some of these These parent blogs youth with T1D are provide a platform blogging along with their parents (see ‘‘by for giving emotional Caleb’’ at This is Caleb support, building and the Despite Diainformational betes blog). These parent blogs support and provide a platform for advocacy, and giving emotional supdecreasing feelings port, building informational support and of isolation for advocacy, and dethese parent creasing feelings of bloggers, as well as isolation for these parent bloggers, as for others who face well as for others who similar challenges. face similar challenges. Blogging gives meaning to their life experiences and generates personal insights for others who are affected in some way by diabetes. One of the goals of a good blog is to build a sense of community with readers. Community building is generally evidenced by the blogrolls or list of blogs on
Journal of Pediatric Health Care
the sidebars that the author reads and recommends (Blog, 2014). In addition, expert bloggers actively grow their blog by including readers in their posts, linking to the posts on other blogs, and connecting readers to each other. BEEN THERE, DONE THAT Diabetes management is complex and requires a lifelong commitment for everyone touched by this chronic disease. Parents and their families want much more than information from their health professionals. They want the opportunity to interact and exchange experiences and information with others who have ‘‘been there and done that’’ to buffer the stresses of living with a chronic condition. Explore a blog today. Where to begin? Start with: The Princess and the Pump (www.theprincessandthepump. com) or Death of a Pancreas (Elise is in a clinical trial for a bionic pancreas; www.deathofapancreas.com). These long-lived blogs have wonderful writing and extensive archives. The content of blogs such as these are positively impacting the lives of others affected by T1D—parents, children, grandparents, friends, and health professionals.
REFERENCES Blog. (2014). In Wikipedia: The Free Encyclopedia. Retrieved from http://en.wikipedia.org/wiki/Blog Brown, D. (2011). Why a blog disclaimer is just as important as a disclosure message [Web log post]. Retrieved from http:// dannybrown.me/2011/01/17/blog-disclaimers-important Centers for Disease Control and Prevention. (2014). National Diabetes Statistics Report: Estimates of Diabetes and Its Burden in the United States, 2014. Atlanta, GA: U.S. Department of Health and Human Services. Dabelia, D., Mayer-Davis, E. J., Saydah, S., Imperatore, G., Linder, B., Divers, J., . Hamman, R. F. (2014). Prevalence of type 1 and type 2 diabetes among children and adolescents from 2001 to 2009. Journal of the American Medical Association, 311, 1778-1786. D’Auria, J. P. (2010). In search of quality health information. Journal of Pediatric Health Care, 24, 137-140. eHEALTH INITIATIVE. (2014). A report on the use of social media to prevent behavioral risk factors associated with chronic disease. Retrieved from http://www.ehidc.org/resource-center/ publications/view_document/365 Grajales, I., Sheps, S., Ho, K., Novak-Lauscher, H., & Eysenbach, G. (2014). Social media: A review and tutorial of applications in medicine and health care. Journal of Medical Internet Research, 15, e13, Retrieved from http://www.jmir.org/2014/ 2/e13/ WordPress. (n.d.). Introduction to blogging. Retrieved from http:// codex.wordpress.org/Introduction_to_Blogging
The journal is seeking On the Web papers. Manuscripts on quality informational and educational resources found on the Web for health care practitioners, patients, and families are highlighted in the column. Prospective authors are encouraged to read author guidelines at www.jpedhc.org. This Department will be published in the journal’s e-pages with linking capabilities to the Web sites discussed. Queries for this Department should be directed to Jennifer D’Auria, PhD, RN, CPNP at [email protected]. Manuscripts can be submitted online at http://ees.elsevier.com/jphc.
www.jpedhc.org
November/December 2014
571
On the Web
Top Parent Blogs for Raising Children with Type 1 Diabetes Jennifer P. D’Auria, PhD, RN, CPNP KEY WORDS Blog, diabetes, parent
Diabetes is one of the most common chronic diseases in children and adolescents. As of June 2014, more than 200,000 youth younger than 20 years are reported to have been diagnosed with diabetes (Centers for Disease Control and Prevention, 2014). Type 1 diabetes (T1D), or insulin-dependent diabetes, is most often diagnosed in children, adolescents, and young adults. From 2001 to 2009, the prevalence of T1D is reported to have increased more than 19% among youth (Dabelia et al., 2014). Learning to live with T1D impacts the entire family, particularly parents who must share in the responsibility and accountability of managing this complex disease with their children.
Section Editor Jennifer P. D’Auria, PhD, RN, CPNP University of North Carolina School of Nursing Chapel Hill, North Carolina Jennifer P. D’Auria, Associate Professor, School of Nursing, The University of North Carolina at Chapel Hill, Chapel Hill, NC. Conflicts of interest: None to report. Disclaimer: Reference to a Web site or application does not imply endorsement by the author or JPHC. Correspondence: Jennifer P. D’Auria, PhD, RN, CPNP, Carrington Hall, CB #7460, Chapel Hill, NC 27599; e-mail: [email protected]. edu. J Pediatr Health Care. (2014) 28, 568-571. 0891-5245/$36.00 Copyright Q 2014 by the National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved. Published online August 20, 2014. http://dx.doi.org/10.1016/j.pedhc.2014.07.003
568
Volume 28 Number 6
Parents of children with T1D are encouraged to become involved in support groups and advocacy organizations to connect with others who share the same ‘‘highs and lows’’ of learning to live with T1D. This edition of On the Web will focus on blogs by parents of children living with T1D. Information about how to evaluate the quality of information on a health-related blog will also be addressed. ABOUT BLOGS The Web 2.0 movement focuses on social media technologies (e.g., wikis, podcasts, and Web logs [shortened term: blogs]) that give users the opportunity to collaborate openly with other Internet users. Blogs were one of the first social media tools to be developed that allowed users to share information and connect with each other. Blogs Blogs are best are best described as personal Web pages described as or journals updated personal Web on a regular basis by pages or journals an author (or blogger), with the goal of buildupdated on a ing a community of regular basis by an persons who share a author (or blogger), similar passion (Blog, 2014). Today, the with the goal of concept of blogging building a extends beyond a sincommunity of gle author to multiauthor blogs (teams of persons who share bloggers), as well as a similar passion. microblogging systems (e.g., Twitter and Tumblr; Blog, 2014). The focus of this article is primarily on single-author parent blogs focused on T1D; multi-author blogs and blogs maintained by major diabetes research and advocacy organizations are not included. Patients have commonly used blogs to share their perspectives, especially in relation to their experiences Journal of Pediatric Health Care
TABLE 1. Criteria and clues for evaluating the quality of blogs Criteria Authority Author(s) Sponsor (if any) Tone of the blog Active and up to date Life span of the blog Blogroll with links to other credible sites
Purpose (or focus) Title Purpose Disclosure(s) Intended audience Biases stated up front Disclaimer Design and management Professional appearance Theme fits the content Posts short, regular, and reverse chronological order Headings, subheadings, and related content easy to find Internal search engine Permanent links to specific posts Feedback mechanisms
Content and coverage Identifies intended audience Content theme is consistent Life span of blog Posts and comments thoughtful and respectful Reasonable interpretation of personal insights and experiences Creativity and currency of information Credible sources Disclaimer
Clues About (Me) page: Name, expertise, education, credentials, affiliations Contact page or details Googling name of the blog or author’s name Frequent posts and posting of new content (at least in the past 3-4 months) Other credible sites link to blog Active links to other credible sites Honors and awards Check URL or domain Interesting and clear title About (Me) page Posts reflect purpose of the blog Good writing tone, no typos or misspellings Link to disclaimer information Interesting title Clean, simple design with easy navigation Can post or link to posts easily No comment spam Categorizes comments and posts Archives of older content Links to sources active and verifiable May include feeds (e.g. Twitter, Facebook) Advertisements, if any, clearly labeled Freshness and frequency of posts and comments Dated posts written in an engaging writing style, appropriate reading level Free from typographical and grammatical errors Provides references to reputable types and sources of information Other credible sites link to blog (Google search) Honors and awards, reviews by others
Note. URL = uniform resource locator.
in living with a chronic illness (Grajales, Sheps, Ho, Novak-Lausher, & Eysenbach, 2014). However, limited research is available on the health-related benefits of blogs and other social media. The potential healthrelated benefits of blogs and other related social media technologies include increased opportunities for patient engagement and empowerment (eHEALTH INITIATIVE, 2014). EVALUATING BLOGS A healthy amount of skepticism should always be exercised when evaluating blogs or any Web site. Blogs commonly include the perspectives and experiences of a single individual (or blogger) and incorporate the ideas of the active readership that posts responses. As such, opinions and experiences expressed on a blog may not reflect information found in professional publication channels. Parents and health care professionals are challenged to determine exactly what constitutes the authority of a blogger, how to weigh personal www.jpedhc.org
opinion versus expert knowledge, and discern the informational context of blog content. Blog software tools (e.g., WordPress and Blogger) are freely available to help design and manage content on blogs. The essential characteristics of a blog include a title, regular entries or posts (in reverse chronological order), a body or main content area, an archive of earlier posts, a comments section, and links to other related sites (WordPress, n.d.). Links to an ‘‘about page’’ and a contact page should also be found on the blog, usually in the header or footer. An uncluttered design and ease of navigation are essential for a blog that hopes to attract lively conversation and an active readership. The need for full disclosure is of particular importance when using blogs for health-related issues (Brown, 2011). Key elements of disclosure that a person should look for on a blog include the author’s purpose and interests (or sponsorship) behind the blog and the author’s biography. A link to a disclaimer should also be November/December 2014
569
TABLE 2. Selected blogs by parents of children with type 1 diabetes Title
URL (http://)
Parent author (No. of children with T1D)
Arden’s Day BleedingFinger Candy Hearts D-Mom Death of a Pancreas Despite Diabetes DiabetesDad Our Diabetic Life Our Life With D The Princess and the Pump The Type 1 Game This is Caleb Welcome to Our Crazy, Happy Life! Welcome to the Sweet Life
www.ardensday.com bleedingfinger.com candyheartsblog.org www.d-mom.com www.deathofapancreas.com www.despitediabetes.com diabetesdad.org www.ourdiabeticlife.com www.ourlifewithd.com www.theprincessandthepump.com www.thetype1game.blogspot.com thisiscaleb.com crazy-happy-life.blogspot.com www.bridgetwrites.blogspot.com
Father (1) Father (2) Mother (1) Mother (1) Mother (1) Mother (1) Father (1) Mother (3) Mother (1) Mother (1) Father (1) Mother (1) Mother (1) Mother (1)
Note. T1D = Type 1 diabetes; URL = uniform resource locator.
easily found on the Web site. The disclaimer should include a statement that the information on the blog: (a) represents the personal opinions and experiences of the blogger, (b) may not be true for everyone’s situation, and (c) does not substitute for medical or professional advice. First impressions of a blog are an important step in the evaluation process. The title of the blog should be clearly related to what the blog is about. The user will need to read some of the posts to determine the tone of language used for the main content areas of the blog. It is also important to consider the situational context of a health-related blog. Is the blog focused on a specific phase in the chronic illness trajectory (e.g., initial, stable, unstable)? Does it use subheadings to categorize content related to different aspects of living with a chronic condition? For example, can a parent find entries related to building family routines with a newly diagnosed child or emotional support for the developmental challenges of adolescents with T1D? D’Auria (2010) provided a list of evaluative criteria and clues for evaluation of traditional Web sites. Table 1 is an adaptation of those criteria specific to blogs to serve as a beginning guide for parents and health professionals. PARENT BLOGS ABOUT T1D Although several blog search engines specialize in searching the content of blogs (e.g., Google Blog Search and Ask.com Blog Search), the quickest and most efficient way to search for relevant parent blogs focused on T1D is to conduct a simple Google search for ‘‘parent blog diabetes.’’ The search results will include links to the growing community of blogs written by parents detailing their journey of raising a child (or children) with T1D. A selected (far from exhaustive) list of parent blogs focused on life with T1D is provided in Table 2. In
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Volume 28 Number 6
most cases, the title of the blog reflects an element of life that impacts raising a child with T1D. It is beyond the scope of this article to describe each of the blogs in the Table. However, a reader cannot help but be affected by the real-life perspectives shared by these parents, from the revisiting of the diagnostic moment to the parenting challenges during adolescence. Diabetes is a family affair, and these bloggers walk that difficult line of not letting diabetes run the lives of their child or family. Most of these blogs have a long life span such that the reader can follow the changing perspectives and challenges across the trajectory of the illness and the course of development. In fact, blogging about T1D is also a family affair. Some of these These parent blogs youth with T1D are provide a platform blogging along with their parents (see ‘‘by for giving emotional Caleb’’ at This is Caleb support, building and the Despite Diainformational betes blog). These parent blogs support and provide a platform for advocacy, and giving emotional supdecreasing feelings port, building informational support and of isolation for advocacy, and dethese parent creasing feelings of bloggers, as well as isolation for these parent bloggers, as for others who face well as for others who similar challenges. face similar challenges. Blogging gives meaning to their life experiences and generates personal insights for others who are affected in some way by diabetes. One of the goals of a good blog is to build a sense of community with readers. Community building is generally evidenced by the blogrolls or list of blogs on
Journal of Pediatric Health Care
the sidebars that the author reads and recommends (Blog, 2014). In addition, expert bloggers actively grow their blog by including readers in their posts, linking to the posts on other blogs, and connecting readers to each other. BEEN THERE, DONE THAT Diabetes management is complex and requires a lifelong commitment for everyone touched by this chronic disease. Parents and their families want much more than information from their health professionals. They want the opportunity to interact and exchange experiences and information with others who have ‘‘been there and done that’’ to buffer the stresses of living with a chronic condition. Explore a blog today. Where to begin? Start with: The Princess and the Pump (www.theprincessandthepump. com) or Death of a Pancreas (Elise is in a clinical trial for a bionic pancreas; www.deathofapancreas.com). These long-lived blogs have wonderful writing and extensive archives. The content of blogs such as these are positively impacting the lives of others affected by T1D—parents, children, grandparents, friends, and health professionals.
REFERENCES Blog. (2014). In Wikipedia: The Free Encyclopedia. Retrieved from http://en.wikipedia.org/wiki/Blog Brown, D. (2011). Why a blog disclaimer is just as important as a disclosure message [Web log post]. Retrieved from http:// dannybrown.me/2011/01/17/blog-disclaimers-important Centers for Disease Control and Prevention. (2014). National Diabetes Statistics Report: Estimates of Diabetes and Its Burden in the United States, 2014. Atlanta, GA: U.S. Department of Health and Human Services. Dabelia, D., Mayer-Davis, E. J., Saydah, S., Imperatore, G., Linder, B., Divers, J., . Hamman, R. F. (2014). Prevalence of type 1 and type 2 diabetes among children and adolescents from 2001 to 2009. Journal of the American Medical Association, 311, 1778-1786. D’Auria, J. P. (2010). In search of quality health information. Journal of Pediatric Health Care, 24, 137-140. eHEALTH INITIATIVE. (2014). A report on the use of social media to prevent behavioral risk factors associated with chronic disease. Retrieved from http://www.ehidc.org/resource-center/ publications/view_document/365 Grajales, I., Sheps, S., Ho, K., Novak-Lauscher, H., & Eysenbach, G. (2014). Social media: A review and tutorial of applications in medicine and health care. Journal of Medical Internet Research, 15, e13, Retrieved from http://www.jmir.org/2014/ 2/e13/ WordPress. (n.d.). Introduction to blogging. Retrieved from http:// codex.wordpress.org/Introduction_to_Blogging
The journal is seeking On the Web papers. Manuscripts on quality informational and educational resources found on the Web for health care practitioners, patients, and families are highlighted in the column. Prospective authors are encouraged to read author guidelines at www.jpedhc.org. This Department will be published in the journal’s e-pages with linking capabilities to the Web sites discussed. Queries for this Department should be directed to Jennifer D’Auria, PhD, RN, CPNP at [email protected]. Manuscripts can be submitted online at http://ees.elsevier.com/jphc.
www.jpedhc.org
November/December 2014
571
