Keywords

burn survivor, connectivity, identity, making meaning, privacy, social media, social support, young adult

 

Authors

  1. Giordano, Marie S. PhD, RN

Abstract

Purpose: Young adult burn survivors who were burned before they reached young adulthood (before the age of 18) face particular challenges in meeting their needs for socialization. Social media are widely used by adolescents and young adults, and permit socialization without face-to-face communication. This qualitative, phenomenological study was conducted in order to explore and describe the lived experience of social media by young adult burn survivors.

 

Methods: Five women and four men between the ages of 20 and 25 years were interviewed; before the age of 18 years, each had sustained burns over more than 25% of their total body surface area. Van Manen's phenomenological methodology provided the study framework.

 

Results: Five essential themes emerged: identity, connectivity, social support, making meaning, and privacy. The participants used social media as a way to express their identity while safeguarding their privacy, and as a way to make meaning out of their traumatic experiences. Connecting with others facilitated a flow of social support and information, which was motivating and encouraging.

 

Conclusion: The findings indicate that the use of social media by young adult burn survivors may be warranted as a way to further their healing processes. The knowledge gained from this study may also be useful in facilitating the development of nursing interventions aimed at preparing young adult burn survivors for reentry into society.

 

Article Content

About 486,000 people each year in the United States sustain burn injuries requiring medical treatment in hospitals.1, 2 Approximately 40,000 require hospitalization-including about 15,000 children younger than 18 years of age.1, 3 During hospitalization and initial recovery, people with severe burn injuries not only must endure the trauma and pain associated with their injuries, but must often do so while in protective isolation, separated from family and friends.4, 5 And after discharge, burn survivors face myriad challenges in adjusting to life postburn. They reenter the world they knew, but may not be the same as they were before their injury. Many face other serious losses, including personal property, homes, jobs, and relationships; some may have lost loved ones.6 Physical changes such as scarring, disfigurement, chronic pain, and loss of body parts can decrease their mobility, making it difficult to perform activities of daily living and to engage in face-to-face contact. Stress responses, including posttraumatic stress disorder, anxiety, depression, and low self-esteem, can cause them to want to avoid other people.7, 8

 

Young adult burn survivors who were burned before they reached young adulthood (that is, before the age of 18) are particularly at risk for limiting their social interactions as a result of such losses.7, 8 According to Erikson's widely accepted psychosocial theory of development, one's sense of self develops in relation to others through a progression of stages9; those who go through adolescence with the physical and psychological complications stemming from burns face additional challenges. For young adult burn survivors, online social networks may offer unique ways for them to connect with peers; yet little is known about such use. This qualitative study was conducted in order to explore and describe the lived experience of social media by young adult burn survivors.

 

BACKGROUND

The care of burn patients begins with emergency treatment at the scene and often extends long after hospital discharge. At the time of admission, the initial treatment goal is physiological stabilization. Throughout hospitalization, the focus will largely be on the care of the burn wound and on the prevention of infection using various techniques, often including isolation.5, 10 Burn injuries are characterized according to cause, type, size (as a percentage of total body surface area [TBSA] burned), depth, distribution, and whether inhalation injury occurred.11 With a major burn-greater than 25% of TBSA-this period of isolation can last for several weeks, even months. The effects of isolation during hospitalization may be compounded by the various physical, psychological, and social consequences of burn injury that continue after discharge.

 

Historically, our society has placed a high value on physical appearance. People with visible scars or physical deformities have faced stigmatization and social isolation.12 They may also encounter people who express curiosity about such scars or deformities. In a study of burn survivors, Travado and colleagues found that many survivors felt anxiety related to the impact of their injuries on daily life, uncertainty about the future, and "fear of facing others."13 Fear of rejection and stigmatization, decreased physical mobility, and complications related to healing can all limit the ability of burn survivors to enter into social situations.

 

Young adults who were burned before 18 years of age may face particular disadvantages when trying to reenter society. According to Erikson, the fear of being rejected by one's peers and other issues related to social belonging or conformity peak during late adolescence and young adulthood.9 Self-esteem, body image, and acceptance of one's appearance all affect a person's ability to master the developmental stage of identity versus role confusion (adolescence) and move on to the next stage of intimacy versus isolation (young adulthood).9 Research indicates that social support is crucial to recovery from burn injuries.14 Yet studies among adolescent and young adult burn survivors have found that the various consequences of such injuries present barriers to socialization and serve to isolate survivors from their peers.13, 15, 16 The Internet offers ways for young adult burn survivors to connect from the privacy of home. Indeed, burn survivor organizations such as the Phoenix Society (http://www.phoenix-society.org), recognizing this need for relationship building, have developed online peer support groups for this age group. But such groups may not help burn victims to reintegrate into their preinjury social networks or to develop new networks outside of the burn experience.

 

Social media Web sites such as blogs and platforms such as Facebook and Twitter are widely used by adolescents and young adults as a means of communication and socialization. A 2010 Pew Research Center survey found that 93% of teens and young adults used the Internet and social media daily17; a follow-up study in 2015 found this percentage essentially unchanged at 92%, with 24% of respondents reporting that they were online "almost constantly."17 The use of social media allows for the development of social networks without face-to-face interaction. Some networks exist primarily to facilitate friendships, while others focus on specific shared interests such as hobbies, professions, or businesses. Regardless of the type of network, people who participate can reach many others almost instantly, and social media friendships can evolve rapidly.

 

Given its wide use among adolescents and young adults, it seems likely that social media could give young adult burn survivors a means to establish relationships, engage in social interactions, and gain vital social support without having to risk face-to-face interaction and possible rejection. But there is scant research investigating such use by this age group for social reintegration after life-altering illnesses or injuries, and I found no qualitative studies that specifically examined the use of social media by young adult burn survivors. That said, many studies have explored the impact of social media on relationships in teens and adults.18-20 There is evidence that the Internet can provide social support and offer opportunities to develop rewarding online friendships.21 Other studies have described detrimental effects, including increased loneliness22 and the risk of sexual predation.18

 

Developing and maintaining social connections may afford burn survivors hope and a sense of belonging that can decrease loneliness and help in their psychological healing.7 For young adult burn survivors, the use of social media might prove to be one such avenue; but more specific, relevant research in this area is needed. The purpose of this qualitative study was to explore and describe the lived experience of social media by young adult burn survivors.

 

METHODS

Design. A phenomenological approach using van Manen's methodology was taken (see Van Manen's Six Nonlinear Research Steps23). In phenomenological research, the goal is to discover the meaning of the lived experience of a phenomenon. In the hermeneutic phenomenological approach used here, the goal is interpretive as well as descriptive. Both the researcher and the study participants, through communication and interpretation, describe and come to understand the meaning of the lived experience. As Creswell states, such an approach allows researchers to "empower individuals to share their stories" and to "hear their voices."24

  
Box. Van Manens Six ... - Click to enlarge in new window Van Manen's Six Nonlinear Research Steps

Sample. A purposive sample of young adult burn survivors was recruited. Inclusion criteria were being between 19 and 25 years of age, using social media, having a burn injury (caused by flame, scalding, chemical exposure) or having Stevens-Johnson syndrome (SJS), having sustained such injury before the age of 19 years, having such injury affecting at least 25% of TBSA, and having been hospitalized for such injury for at least two weeks. (SJS is most commonly caused by an adverse reaction to certain medications, and is characterized by blistering and sloughing of the epidermis and mucous membranes.25 Severe cases are treated at burn centers and share many of the complications associated with burns. Thus, for this study, SJS was considered equivalent to burn injury.) Sample size was not determined before data collection; rather, participants were recruited until saturation was reached with no redundancy in collected data or information.

 

Ethical considerations and recruitment. Institutional review board approval was obtained from the City University of New York before recruitment began. Recruitment flyers were distributed by hand and postal mail to regional burn centers in New Jersey, New York, Ohio, Texas, and Washington, DC, as well as through e-mails to national burn survivor organizations. People who were interested in participating were instructed to contact me by e-mail. Respondents who met the inclusion criteria received an e-mail containing a description of the study, a demographic data form, and a consent form. All forms were completed and returned electronically or through postal mail. Verbal consent was recorded just before interviewing began. Recognizing that participants had experienced a traumatic event and were continuing to heal, I reminded them that they could stop the interview at any time; I also explained that if they felt they needed counseling, appropriate mental health resources would be provided. No one reported needing or using these resources.

 

Interviews were conducted via Skype at a time designated by each participant. Each interview lasted between 25 and 45 minutes. Digital audio recordings of each interview were electronically downloaded to a secure server at a professional transcription service and were transcribed verbatim. The transcripts were then electronically returned for my review and data analysis. To maintain confidentiality, a pseudonym was used for each participant in all transcriptions. All digital audio recordings, transcripts, and study documents were kept in a locked desk in my office.

 

Data collection. As the researcher, I performed all aspects of data collection and analysis. Semistructured interviews were conducted from July 2012 through March 2013. Each interview began with the question, "As a young adult burn survivor, what are your experiences with social media?" Additional questions were used to reflect, clarify, or seek additional information (for example, "Can you tell me more about that?"; "What did you mean by[horizontal ellipsis] ?"; "How did you feel when[horizontal ellipsis] ?"; "What was it like for you when you were discharged from the burn unit?"; "What does that mean to you?") Silence was used to enable participants to reflect emerging feelings or thoughts associated with their experience. Throughout the interview, nonverbal responses (such as body language, gestures, and facial expressions) were noted and incorporated in the transcript.

 

Data analysis. The data were analyzed manually in accordance with van Manen's six nonlinear research steps. Analysis began with my writing a description of personal experiences I'd had with burn injuries and burn patients. This was done to help me set any personal beliefs aside and hold the participants' experiences in original, immediate awareness. Then I read each transcribed interview multiple times while listening to the audio recording. Phrases that captured the essence of the meaning of the participants' experiences were identified, color coded, and clustered into 14 themes. Data were then further analyzed and synthesized into five essential themes. (For details, see Table 1.) To ensure accuracy of the data analysis and emergent themes, several qualitative and quantitative research experts reviewed this work.

  
Table 1 - Click to enlarge in new window Synthesis of the Five Essential Themes

RESULTS

Sample. The final sample consisted of nine participants: five women and four men, all between the ages of 20 and 25 years. The TBSA burned ranged from 25% to 85% (mean, 56.7%). The length of time participants had spent in a hospital burn unit ranged from three to 44 weeks (mean, 15 weeks). Body areas affected included the face, head, neck, chest, back, genitalia, arms, and legs. Seven participants had sustained burns to the face and also had readily visible scars on their bodies. Two participants only had scars in areas that could be covered by clothing (back, genitalia, and legs).

 

Participants were recruited from across the United States (Arizona, Arkansas, California, Colorado, Connecticut, New Jersey, North Carolina, Pennsylvania, and Washington State). Seven lived in suburban areas, one lived in an urban area, and one lived in a rural area. Self-reported ethnicity or culture included four whites, one Hispanic, one African American, one German American, one Scottish Mexican, and one "Southern American." Six were college students, one was a mother of three, and two were employed full time. Four participants identified as Christian or Catholic, one was a Seventh-Day Adventist, and four did not identify with any religious group.

 

All participants reported using social media between four and 20 hours per week (mean, 10.7 hours). Facebook and Twitter were the most used platforms. Participants also used Skype, Google Plus, MySpace, Reddit, Foursquare, Instagram, Pinterest, Plenty of Fish, LinkedIn, and YouTube. Some reported using private social media platforms accessed through membership in burn organizations and support groups. (For more details on participant demographics, see Table 2.)

  
Table 2 - Click to enlarge in new window Participant Demographics

Findings. These young adult burn survivors used social media as a way to express their identity while safeguarding their privacy. They reported using social media sites to connect with friends who weren't connected to the burn experience as well as with other burn survivors. Social media networks offered them a flow of social support and information, which they found motivating and encouraging, and which helped them make meaning out of the traumatic event. Their lived experiences of social media can be further described through five essential themes: identity, connectivity, social support, making meaning, and privacy.

 

Identity. When asked to describe their experiences with social media as young adult burn survivors, many participants began by telling their stories of how they were burned, what they experienced during hospitalization and recovery, and what it meant to them to have scars. They described how social media helped them express their feelings about these experiences. Many participants reported that they or their family members had chronicled the hospitalization and at-home recovery on various social media platforms. They wanted people to know what they'd been through and how that defines who they are now. Some chose to write about it, some chose to post pictures, and some did both. One chose to make YouTube videos.

 

Nicole: "I used [social media][horizontal ellipsis] to share with people my journey of recovery."

 

Jessica: "I started YouTube videos[horizontal ellipsis] to show the world what you've been through is immense."

 

Peter: "Part of it is an outlet to share my story."

 

Participants discussed how they or others perceived their identity, in terms of who they are, who they want to be or don't want to be, or some combination of these.

 

Andrew: "With the social media, you can kind of be whoever you want to be or be no one at all."

 

Lauren: "One of my first concerns with social media[horizontal ellipsis] was would I really be the person I could be on this. Could they really see past my physical difference and see me as a person when all they see is a picture?"

 

Many participants posted pictures of art and music they liked, quotes they found inspirational, stories they found funny, and other things that were important, interesting, or resonated with them. Social media gave them a platform for expressing who they were inside, while affording them some protection from judgments based on their appearance.

 

Lauren: "I try not to put many photos of my scars[horizontal ellipsis]. I like people to see me as who I am, and my personality, not necessarily worrying about the phys-ical dynamics of my body."

 

Christy: "It feels good when I put pictures up of the kids because everybody's like, "Oh, they're so cute."[horizontal ellipsis] It's like taking the distraction off of me and putting it towards them with positive, you know. So I'm doing the best I can to raise them, and people are noticing that, and that makes me feel good."

 

Connectivity. The ability to immediately engage with another person was a very important benefit of social media for the participants. As a result of their burns and complications of healing, they were often kept from activities and isolated from people with whom they would have otherwise connected. Social media provided links to the outside world and gave them a sense of belonging. They were able to access and share information that helped them in healing and in getting on with daily life.

 

Nicole: "It was my way to connect with my friends and to reestablish relationships and to feel involved in people's lives."

 

Lauren: "Twitter gives me a connection with a world that is a million miles away."

 

Valerie: "I don't run into a lot of other burn survivors in my everyday life. So it's good seeing that there are other people out there that have dealt with what I have dealt with."

 

Social support. Participants recognized the importance of social support to their healing processes, and spoke about giving and receiving such support through social media. It provided them with access to stories posted on Twitter, Facebook, and other social media networks, as well as those shared on private burn-related social media sites. Participants reported that such stories offered them hope, inspiration, and motivation. Social support obtained through the use of social media extended, in some cases, to survivors' parents.

 

Valerie: "I think it is definitely helpful as a resource and just to see other people out there that have dealt with what I have dealt with."

 

Mike: "It makes me feel good. I mean, I know I had real, a lot of trouble when it first happened: angry, sad, all that stuff going through that. I know it's really nice to see people who are also going through it and [are] getting past it and moving on with their lives and living life to the fullest."

 

Many participants identified a need to share their stories and gain information that would help them to progress through their healing journey. They spoke about the importance of finding a judgment-free "zone" in which people who have experienced similar trauma can honestly say "I know how you feel."

 

Nicole: "I used it to connect with people and I found this girl who had SJS[horizontal ellipsis]. And we kind of grew in our recovery together, watched our hair grow."

 

Jessica: "Facebook helped me make friendships[horizontal ellipsis] it took us only three days to build such a strong bond[horizontal ellipsis] because we've experienced the same thing; we're taking the same journey."

 

Christy: "I know they're not judging me based on my scars because they have scars, too."

 

Stephanie: "You actually have somebody finally that understands what you're going through."

 

The need to connect with family and friends stems in part from a need for belonging. Participants spoke about the positive feelings associated with knowing about social, religious, and family gatherings and events. Participants also indicated that social media helped family members and friends to convey their understanding of the effects of the trauma.

 

Making meaning is a process that involves seeking information that will help one to understand and make sense of a particular event or situation. Making meaning can then inspire action. For many participants, social media helped them to find and access such information and provided motivation for moving beyond the trauma. Several participants realized that they could help others who had had similar experiences. Making meaning out of their burn experiences put them on paths that included pursuing careers in health care, becoming motivational speakers, educating others about burn prevention, and raising money for burn survivor support groups.

 

Peter: "By typing stuff out, it gears more toward what I gained from it and why I'm a better person and why I wouldn't take anything back that happened and all of that. And I feel like, as a doctor I could[horizontal ellipsis] I feel like I could do something that somebody else could do. So, just that motivation and seeing the kind of pain people can be in, it kind of helps motivate me towards going down my career path and doing what I want to do."

 

For many, part of the healing experience included raising awareness about burn prevention or SJS. It was also important for participants to share insights into their reentry into society through chronicling the healing process, including physical, psychological, and social issues. Some participants did this by producing YouTube videos, posting updates on Facebook and Twitter and other social media networks, sharing their stories on burn and SJS support Web sites, and participating in fundraising activities.

 

Lauren: "It's kind of my link to the outside community. I volunteer with the SOAR [Phoenix Society's Survivors Offering Assistance in Recovery] program. My donations and a lot of my charity work go toward the burn survivor organizations."

 

Nicole: "I want to promote [SJS] to everyone and actually at the bottom of my Facebook page, I have a URL at the bottom of my album."

 

It was important for some participants to be available as mentors to others who have gone through similar experiences. They spoke about how using social media to do so helped them to accomplish this. They considered themselves to be motivational speakers, role models, and advocates for "the cause."

 

Andrew: "It allows me to put myself out there in a virtual sense[horizontal ellipsis] being a motivational speaker."

 

Jessica: "It motivates me [to help people], even people who aren't burn survivors, but who have emotional scars. I started YouTube videos[horizontal ellipsis] to show the world what you've been through is immense[horizontal ellipsis]. I feel like I'm kind of a motivator."

 

Privacy. Privacy-or the lack of it-often came up when young adult burn survivors described their experiences with social media. They realized that their posts were out there for all to see, and discussed the possible consequences of revealing too much about themselves. Some were cautious about what they wanted to share and with whom, especially when using public (as opposed to private) social media sites.

 

Andrew: "There is probably not a whole lot of privacy on there."

 

Lauren: "It's also a struggle of how much do I put out there and allow myself to go with and how do I connect with others."

 

Stephanie: "You can't keep it private. Everybody's going to know about it, no matter what, whether you want them to or not."

 

Others identified social media platforms as places where they could be transparent about who they really are. It was important to them not to hide.

 

Jessica: "I'm always open. I'm not a private person. I never hid my scars."

 

Christy: "I like to be truthful. Instead of trying to lie just to[horizontal ellipsis] make myself feel good, because I don't like to live a lie. I don't want them to think that I'm somebody I'm not."

 

DISCUSSION

The results of this study indicate that the use of social media can aid young adult burn survivors in the healing process by providing them with a safer means of reentry into social relationships. For the participants in this study, such use helped them to reestablish identity, connect with others for support, and make meaning out of the traumatic experience of burn injury. Social media helped them to negotiate a balance between privacy and openness when connecting both with other burn survivors and with people who weren't connected to the burn experience; and it facilitated networking to establish a flow of social support and information. Overall, participants reported their experiences with social media as motivating and encouraging.

 

The essential theme of identity is widely recognized as a developmental need of adolescents and young adults. Other studies of social media use, conducted among general populations in this age group26-28 and other illness populations,29, 30 have also found that it provides platforms for self-expression and construction of identity. Participants described social media as a means for connecting with others when they were physically or socially isolated. This is in keeping with other research that has found social media to be an important way for people to gain immediate access to other people, support, and information.31-34 Social media platforms may be particularly useful for people who are physically and socially isolated because of illness or disability. In a qualitative study of social media use by 101 people with various disabilities, survey respondents reported that social media helped them "feel like everyone else" and "be where the others are."35

 

Social media provided participants with global access to information, friends, and online patient communities. Participants described the social support as motivating and comforting. Social media are used by burn survivor organizations in bringing survivors together, both through online patient forums and by spreading the word about face-to-face events. Individual online efforts have also been shown to afford participants vital social support. In one ethnographic study, researchers examined the online narratives of 16 women ages 20 to 39 years who had been diagnosed with cancer and had started blogs about their illness experiences.29 The researchers found that these specialized forums facilitated the exchange of information and a broad range of emotions.

 

Participants reported that the use of social media helped them make meaning out of their traumatic burn experiences. It gave them a way to create something positive through connections with others who had experienced similar trauma, and to access resources that helped them find and pursue opportunities for personal and professional growth. The need to make meaning from a traumatic experience has been studied among diverse populations (though to my knowledge, not with young adult burn survivors). In a correlational study of 418 adolescents who'd experienced "turning point" events, Tavernier and Willoughby found that the ability to make meaning of such an event was associated with higher psychological well-being afterward.36 In another study, Hogan and colleagues surveyed 107 family members of people who were tissue donors postmortem.4 The researchers found that for these family members, knowing that some good came from a loved one's death helped them cope with the loss and gave it meaning.

 

With regard to privacy, researchers have investigated the implications of social media for children, adolescents, and young adults in the general population.37, 38 In 2011, the American Academy of Pediatrics released a clinical report on the impact of social media on children, adolescents, and their families.37 The report identified developmental factors, including limited self-regulatory ability and susceptibility to peer pressure, that increase a child's or teen's vulnerability to online privacy-related problems such as cyberbullying and sexting. Moreover, the ease of controlling one's posts may vary depending on the platform. On the other hand, emerging technologies also make it easier to post a variety of content with increasingly fast transmission.

 

Limitations. One limitation is that this study's results cannot be generalized to all young adult burn survivors. Some survivors may not use social media; and the experiences of those who do might not be representative of those who do not.

 

PRACTICE IMPLICATIONS AND CONCLUSIONS

Although more research is needed, the findings of this study suggest that the use of social media by young adult burn survivors may be warranted as a way to further their healing processes. As these participants reported, social media can help such survivors (and anyone who is physically or socially isolated) to gain access to untapped resources, express themselves, and connect with a diverse range of other people. And given that making meaning out of traumatic experiences has been shown to enhance coping in other populations, it stands to reason that social media can also help young adult burn survivors to do so.

 

Nurses can promote the use of social media by encouraging survivors to participate in open and private online forums and platforms. It's important that nurses ask patients about their computer and social media literacy, and offer help with improving literacy as needed. Links to burn survivor organizations and specialized online communities can be provided. Nurses can also help to develop interactive health promotion programs specific to adolescent and young adult burn survivors that incorporate social media. Such programs might facilitate longer-term nurse-burn survivor relationships that support continued learning and offer ongoing help from nurses. In fostering social media use, such programs could also prevent or ameliorate social isolation.

 

One of the tasks of nurse educators is to incorporate social media-related knowledge into the educational curricula.34, 39 Based on my findings and those of other studies, it seems clear that nursing education programs should emphasize the use of social media in promoting, protecting, and restoring health, so that all nurses are aware of this potential. Indeed, as a recent systematic review found, social media networks can be used to deliver cost-effective, targeted interventions "to youth populations and hard-to-reach minority or underserved populations."40 That said, it's important that nurses be aware of any professional guidelines, organizational policies, and laws that pertain to providers' use of social media in communicating with patients. Ethical and legal considerations, notably with regard to privacy and professional nurse-patient boundaries, should inform policy development. Two useful resources are the American Nurses Association's Social Networking Principles Toolkit, which contains both free and members-only content (http://bit.ly/239X6X5); and the National Council of State Boards of Nursing's free brochure, A Nurse's Guide to the Use of Social Media (http://www.ncsbn.org/3739.htm).

 

If we are to further our understanding of burn survivors' healing process, particularly with regard to social media, more research is needed, including research conducted among young adult burn survivors who don't use social media. Studies of social media use by young adults dealing with other kinds of traumatic injuries or chronic illnesses, as well as by healthy young adults, could provide insight into other variables. Future research should also include quantitative studies measuring the relationships among the variables (the five essential themes) identified in this study to social media use by young adults; and longitudinal studies measuring the identified themes and social media use in adult burn survivors.

 

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For three additional continuing nursing education activities on social media, go to http://www.nursingcenter.com/ce.