A Qualitative Examination of Social Changes and Challenges in Rural Adolescents With Traumatic Brain Injury

Design

We used qualitative investigation as part of a larger, unpublished empirical study to examine the experiences of rural parents and their adolescents with TBI. A flexible application of grounded theory, congruent with a pragmatic epistemological position (e.g., Corbin & Strauss, 2008), allowed us to utilize the substantial body of literature on TBI in adolescents to structure interviews and narrow research questions. We used an iterative process, whereby theories and research questions were constantly revisited as data were collected and reflected upon (Henwood & Pidgeon, 2003).

Procedures

We identified 87 adolescents in the target age range for the study from a database maintained by a statewide nonprofit organization in the Rocky Mountain Region of the United States dedicated to support and advocacy for individuals with TBI and their caregivers. The first author initially mailed flyers to the eligible families briefly outlining study goals and procedures and including contact information for those interested in participating. However, we received no responses. Representatives of the organization contacted parents during routine follow-up and asked if they would be interested in participating. Twelve parents agreed to participate with their children, and their names were provided to the primary investigator. Of these, we could not contact four, and one was ineligible due to inability to use a computer or provide verbal responses. Ultimately, three parents (of four adolescents) provided signed consent for themselves and children under the age of 18. Adolescents under the age of 18 then signed an assent form prior to participation and the 18-year-old participants signed consent. Inclusion criteria after parental consent was obtained were (a) aged 12 to 18 years; (b) initial severity level estimated by using any combination of loss of consciousness (LOC), posttraumatic amnesia (PTA), brain imaging, or brain scan; (c) participant able to interface with computer with or without assistance (e.g., manipulate a mouse or cursor); (d) language ability must be high enough to verbally respond to questions; and (e) the initial brain injury must have occurred after the age of 2.

We mailed participants the demographic questionnaire with questions regarding medical, developmental, and educational history; services accessed; and specific information regarding the TBI (e.g., age, severity, and family burden). We also mailed the Social Skills Rating System (Gresham & Elliot, 1990), a 40-item parent completed rating scale of social skills. All families completed and returned the packet. Next, we contacted adolescent participants via computer interface on telehealth software and administered a set of assessment measures related to working memory (digit span task from the Wechsler Intelligence Scale for Children, Fourth Edition or Wechsler Adult Intelligence Scale, Fourth Edition; Wechsler, 2003, 2008), verbal fluency (Controlled Oral Word Association Test; Benton & Hamsher, 1976), and social problem-solving (A virtual reality social problem-solving task adapted from the Interpersonal Negotiations Strategy Test; Yeates et al., 1991; adapted by Hanten et al., 2008; Pediatric Social Relations-Interaction with Peers–Short Form; National Institute of Neurological Disorders and Stroke, 2010). Although we do not detail those evaluation procedures in this article, we summarize results in our description of participants to assist in the interpretation of qualitative interviews.

The interview was not part of the original consent, thus we obtained consent and assent from participants for the interview separately in accordance with participants’ ages. We contacted them by telephone and interviewed (approximately 50–60 min for parents and 15–25 min for adolescents). All interviews were conducted within 6 months of the adolescent assessment. Interviews were then transcribed verbatim and entered into QSR International’s NVivo (2014) software for analysis and logging of interviewer’s reflections. All interviews were transcribed and analyzed prior to conducting a subsequent interview.

Participants

Participants included three parents and four adolescents. Adolescent participants (using pseudonyms) included one male (Ricardo) and three females (Natalie, Reba, and Kelly) who lived in small towns with varying proximity to larger suburban areas. We classified TBI severity using LOC, PTA, and physical features (skull fracture, positive brain imaging, and brain swelling). A TBI was classified as mild if LOC was less than 15 min, PTA less than 24 hr, and absent the physical features mentioned in the criteria. We defined moderate TBI as LOC of 15 min to 24 hr and PTA of 1 to 7 days. Severe TBI was defined as LOC greater than 24 hr or PTA greater than 7 days. Participants were categorized according to the most severe category of any of the symptoms for which data were obtained. Using this taxonomy, two participants sustained mild TBIs and two participants sustained moderate TBIs. The three female participants sustained TBIs in adolescence, while the male participant sustained a TBI in childhood.

Ricardo was a 15-year-old Hispanic male who sustained a mild TBI falling off playground equipment when he was 8 years old. He lived with his mother in a town on a Native American reservation with a population of 200 that was located approximately 45 miles from a relatively large urban area. He had developmental concerns before his TBI, including a learning disability and developmental apraxia subsequent to reported cognitive regression at age 3. Although not substantiated, this regression may have been related to a suspected head injury while in the care of his father. On assessment measures, Ricardo demonstrated some impairment in social skills and social quality of life and clear impairment on the measures of short-term and working memory. Verbal fluency and social problem-solving were close to what would be expected for someone in his age. Ricardo’s mother had a graduate degree and was employed at the time of the interviews.

Natalie was an 18-year-old European American female who sustained a moderate TBI when she was 16 years old. Prior to college, Natalie lived with her mother in a town with a population of 9,500 that was located approximately 100 miles from the nearest relatively large city. Natalie incurred her TBI in a car accident. Her injury was the most severe of the participants and included skull fractures, brain swelling, and a magnetic resonance imaging (MRI) indicating frontal lobe damage. She also lost most of the hearing in one ear. She had no developmental concerns prior to the accident. Natalie scored in the average or above average range on all measures. Natalie’s mother had a college degree and was employed at the time of the interviews.

Reba was a 16-year-old European American female who sustained a mild TBI when she was 13 years old in a car accident. She lived with her mother, father, and her sister, Kelly, in a town with a population of 7,000 that was 12 miles from the nearest relatively large city. She had two to three prior concussions before the car accident. Reba demonstrated some difficulty with complex working memory, verbal fluency, and social problem-solving. Her scores in social skills and social quality of life were average to above average as compared to female peers. Reba and Kelly’s mother and father both had high school and some college education and were employed at the time of the interviews.

Kelly is Reba’s sister. She was 18 years old at the time of the study and was 16 years old when she sustained a moderate TBI in a car accident. Her injury was more severe than her sister’s injury due to a skull fracture and hemorrhaging. Kelly lived at home with her parents and sister and worked part time. Kelly demonstrated some difficulty with complex working memory, but had average verbal fluency and social problem-solving. Her scores in social skills and social quality of life were average to above average as compared to female peers.

Interviews

We developed the interview questions using current theories regarding developmental social cognition, brain injury, and rural health and disability to guide interviews. Guiding interests and concepts were a point of departure for developing ideas. We established and modeled a theoretical guiding framework in QSR International’s NVivo (2014) software prior to conducting the initial interviews. The introduction, main questions, and concluding remarks for the interviews were written and read to each participant, additional questions and probes followed from participant responses and developing themes. The main guiding questions for interviews were (a) What did you see as your (your child’s) needs when the injury occurred and after injury treatment, (b) Tell me about the services and supports you (your child) received following the injury, and (c) Tell me about how the TBI affected you (your child) socially. The first author conducted all interviews. We developed the specific concepts that emerged from participant–researcher interactions through successive stages of analysis and studying data. Simultaneous analysis and collection of data lead to new questions and ideas for themes. All participants received the same line of inquiry, but because new and emerging themes were explored, probes and follow-up questions were influenced by prior interviews and analyses. We documented all decisions in a log to produce a detailed audit trail.

Data Analytic Strategy

We used Bryman’s (2001) four stages of qualitative analysis to develop and refine themes after each interview. The following stages of analysis were used for each interview that was administered:

To aid in the creation of a clear and reliable coding scheme, we used consistency checks to evaluate the clarity of categories during the final interviews (Thomas, 2006). As the second rater, an undergraduate research assistant reviewed the objectives, categories, and descriptions of the categories, along with several samples of raw text for each theme. The first author had previously coded each segment of text. We used discrepancies between the two raters to refine themes and operational definitions. We repeated the process with new segments of raw text over several iterations until both raters classified each section of sample text into the same themes. Themes were organized and analyzed in NVivo (2014) using several methods. First, we created a visual model by physically sorting themes into conceptually similar groups. Then, we used a theme query to view text across groupings. When viewing all text, we created new nodes that encompassed groups of themes. We reanalyzed themes with a few sources and references to determine if they fit under an existing theme, or if the creation of a new theme could encompass the rarely used theme with other existing themes.

Validity and trustworthiness (Morse et al., 2002) were established primarily through the iterative process and the methodological decisions discussed; however, we used several other methods of establishing rigor in qualitative research. We used direct and indirect assessment results as one source of triangulation. This study uses triangulation of methods (direct measures and interviews) and triangulation of subjects (parent and adolescent) by quantitatively summarizing abilities and context, then interviewing both parents and their children. We kept a log to document ongoing decisions in context to add to the trustworthiness and provide transparency (Bowen, 2009; Guba & Lincoln, 1989). Saturation was established using a stopping criterion of two interviews with no new themes emerging (Francis et al., 2010).

Theme 1: Personal Change Associated With TBI

Personal changes are those changes that directly resulted from TBI. Subthemes in this category encompassed changes in attitude, emotions, cognitive abilities, social skills, and personality and were described as both sudden and changing gradually over time. Two interrelated concepts that arose during the interviews were the suddenness of change and changes in attitude. These concepts represent emotional reactions and cognitive interpretations of the events surrounding the adolescent’s TBI and the ensuing changes. The suddenness of change was not expressed by many study participants, nor was it expressed many times throughout interviews. Nonetheless, it seemed to have particular poignancy for the participants (both of whom were parents) based on their emotional expression. For example, Ricardo’s mother’s voice trembled slightly when she reported that, “It is bothersome to fall off of something and then waking up and they don’t do what they used to.” At the conclusion of her interview, Natalie’s mother made a point of expressing her concern for other families around this issue:

Nobody ever expects to have to go through a situation like this . . . my daughter had asked to stay the night with a friend, it was just a night like any before, and I had some bills that were overdue and none of that mattered Saturday morning.

These parents recognized the suddenness by which the event changed their lives and the lives of their child.

Participants’ attitudes changed and included positive and negative interpretations of the unfolding of injury-related sequelae. The majority of content that we analyzed had a positive emotional tone. Several participants expressed a belief in ability, either through belief in one’s self or in belief in a greater power or purpose. Natalie reported her sense of belief in herself was essential in being able to cope with her TBI “because if I didn’t believe in myself then I didn’t really have anyone who did, and if I didn’t believe I could do it then I wouldn’t be able to do it.” Similarly, her mother said,

When [Natalie] first got hurt I braided her hair, she was a warrior and I guess that the medieval women would braid their hair when they went into battle so even if she did have a brain injury, it didn’t matter. Even if, she was still going to have to work hard no matter what. It didn’t matter, we didn’t just sit there wonder if she was going to be able to do this, we did what was in front of us.

Reba and Kelly’s mother expressed a change in the manner in which her family appreciated daily life. She said, “After it happened, we got a book, every night we would write our blessing in for the day.” When we asked Natalie about changes in her satisfaction from peer interaction, she replied, “Yes, I appreciate them a lot more,” and went on to explain, “I realize how fast life can be taken away.” Reba, on the other hand, expressed her handling of her peers’ negative reaction to her social difficulties with indifference, stating that even though it bothered her sometimes “it just is what it is.”

Participants also discussed several changes in physical, mental, and personality characteristics. It was clear that all of these changes affected socialization and social process a great deal. Interestingly, but unsurprisingly, a need to attend to physical concerns and to be mindful of physical limitations were often salient themes, especially with regard to the first year after the injuries. Adolescents struggled with headaches, food and light sensitivities, and balance problems. Often, these issues compromised their participation in activities such as school and sports. Years after the accidents, all participants continued to miss school and work due to headaches or because they had to travel long distances to go to medical specialists.

There were also changes in personality. Natalie’s mother reported that Natalie changed quite a bit after the accident, becoming more “spontaneous” and elaborating that she was “dumbfounded” by Natalie’s choices at times. Natalie scored well on all of the cognitive and social measures administered. On questions regarding Natalie’s number of friends and if her number of friends changed, Natalie’s mother indicated a high number of friends both before and after Natalie’s TBI. However, both Natalie and her mother described changes in the types of friends with whom Natalie chose to spend time. Natalie’s mother stated,

Well, I know that before she was in the accident that she typically hung out with the people that would be considered . . . I’d say the nerds or the preppies, you know? People that were working hard for a future . . . But I noticed that the kids that were starting to come over were the one who had rough lives at home that were the dropouts, that were struggling, that were making bad choices, that were on probation.

Furthermore, she was concerned that Natalie was not as motivated toward future goals as she was prior to the accident. She described Natalie’s new friends as “stoners” and cited an example in which Natalie brought marijuana on a school trip, jeopardizing her future. Natalie described the change in friends in terms of her peers’ reaction to her injury. She stated that she “found out who her real friends were,” because they were the kids that continued to visit her after her initial recovery.

Ricardo also expressed changes in his personality and emotional reactivity. Both Ricardo and his mother described anxiety as a barrier to social interaction, but Ricardo also expressed a change more generally related to personality change or emotional reaction. Ricardo described himself as “more sensitive” now in relation to friends not wanting to spend time with him anymore.

There also were changes in internal state, with focus on anxiety, avoidance, and hesitancy resulting from the TBI and surrounding events (e.g., accident) that result in deterring the adolescent from engaging in social behaviors. Participants described this reticence in several ways. Some participants described distinct and exaggerated fears of particular situations related to the accident. Natalie’s mother said, “For a while she didn’t hang out with anybody because she didn’t want to get in a car. I was the only one that she would let drive her anywhere.” This statement captures the social implications of fear and hesitancy. Later in the interview, she described the severity of post-traumatic symptoms while discussing an accident that Natalie’s brother had been in 2 years after Natalie’s accident, saying, “because of what she had been through during this accident it made her relive the whole thing.” Ricardo described a more generalized anxiety, when asked about what his needs were after his accident he stated, “That was when I got so nervous.” When asked what he was nervous about, he replied “Everything,” and went on to describe routine interactions with peers. Kelly described her reluctance to talk about the accident with her peers and how she would “tell them the gist of the story” to appease them and avoid going into details.

Several of the participants described changes in social skills and cognition. Reba and her mother described Reba’s changes in ability and speed of processing information as well as following conversations. Relatedly, Ricardo’s mother described Ricardo’s difficulty with social interaction, saying that he struggles to find something to talk to other kids about, “and then, if it turns out that this is not what the kids want to talk about, well, then [he does not] know what to do after that.” Assessment results were consistent with quantifiable impairment in social, linguistic, and cognitive abilities, but did not capture the reciprocal interaction that these impairments may have had with the emotional changes Ricardo and his mother described. Ricardo related his social experiences back to his emotional reaction, “I try my best and they don’t really care, and I feel left out, like always I feel left out.” Ricardo was the only participant whose assessment data indicated a loss of friends following the TBI. His mother indicated on the questionnaire that Ricardo currently has no friends.

Participants described most changes to the adolescents as changing significantly over time. Specifically, most often, they described symptoms as completely remediated or significantly improving over time. However, some symptoms remained, perhaps at a lower level, as was often the case with headaches and memory problems, while others remained the same or worsened. Ricardo and his mother described social difficulties as worsening over time in the context of a dynamic social landscape with limited peer options. Ricardo’s mother reported clearly worsening social abilities following his TBI in third grade, saying, “I could see him struggling in 4th grade, and when he hit 5th and 6th grade it was more obvious, and then being social was harder for him, and 7th and 8th grade was terrible.” Ricardo expressed that he definitely believes his friendships changed following his TBI. He described more succinctly his experience of the difficulty he had adapting to a changing social milieu: “Everybody else is changed. But I don’t really remember when and how.” Kelly and Reba’s mother described how the treatment of her daughters has changed even though many of the changes experienced by the girls remain, such as headaches and slow processing. She stated that Reba’s basketball coach no longer acknowledges the TBI despite the fact that Reba has difficulty with the pace of the game. Furthermore, Reba’s headaches no longer get much attention at home and her school often does not take into consideration her needs as a result of her TBI. This lack of recognition of impairment due to TBI is in the context of reports by Reba and her mother that Reba continues to struggle with speed of processing and verbal comprehension. In addition, results of this study clearly indicate potential impairment in short-term/working memory, the executive component of language, and social problem-solving.

Theme 2: Environmental Responses to the TBI

Environmental responses include factors associated with family, peers, and the community. Responses were dominated by mentions of peer and community reactions to the TBI, but also included the importance of family support. First, peer and community responses appeared directly linked to the visibility of the accident to the community. For example, Natalie’s car accident involved several other peers and occurred in or near town. Natalie’s mother reported, “There were members of our community that I’ve never even met that came to me and they said they were going to do a benefit for these kids. They knew it could be their child.” Natalie’s mother captured the interaction between the visibility of the accident, the small size of the community, and the dramatic interaction present in this statement when she described Natalie’s reentry into school following the accident:

. . . they went in holding hands, I believe. I think her and the girl that was driving the car . . . the girl that was driving the car had her leg shattered, they actually went in holding hands. That was a sign to the community that it wasn’t about blame, it wasn’t about any of that other than “Thank God were all still alive,” because a few months before that, they lost a young man at the high school in a car wreck and it was a big football player that had a full-ride scholarship and all that stuff. These delicate girls were alive and it was a healing for the whole community.

In contrast, Ricardo’s accident was not high profile. In fact, the school he was attending initially denied that it occurred. Neither Ricardo nor his mother described any community response to his injury. They described peer responses, primarily in a negative manner. Ricardo stated that peers treated him like “the slow kid,” and his mother stated that “when he can’t speak clearly or when his interests are different, they call him names.” In contrast, Reba described peer reactions in relation to her cognitive processing changes, saying that her friends frequently commented on these challenges, “they would have to explain it to me again, oh, we have to explain it again to [Reba].”

Reba and Kelly’s mother described their “church family” as important in their lives and the family received a great deal of support following the accident from members of their church. Both Kelly and her mother discussed differing responses between people at church and those at school. When asked if her daughters experienced marginalization due to changes in cognitive and social abilities at church like they did at school, Reba and Kelly’s mother stated, “I just think it was stronger, all that was different was just a stronger support system. We already have a strong support system from the church, but it was even stronger.”

Natalie’s mother also described several ways in which the community and peers reacted to Natalie’s accident in a particular manner consistent with drawing inspiration from the event. For example, in describing Natalie’s school reentry she stated,

Girls were crying, and not because they were like, “look at her she’s a freak,” they were like, “Oh my God, she’s beautiful, she’s missing her teeth.” People were coming up to her and telling her that it made them feel like whatever they had going on was nothing. They were like, “You give me hope, you give me strength.”

Although Natalie’s mother was the only participant who described this particular manner of community response, she made several references to it.

Second, four of the seven participants in this study made specific mention of family members in the context of recovery and reintegration. This took the form of same-aged relatives being available for social support and practice, and parents being present and patient in the helping process. Ricardo’s mother described the role Ricardo’s cousin (who is 2 years younger than Ricardo) plays in facilitating social development:

[Ricardo] is trying to be bossy and the older [cousin] gets, you know, he is not as gullible and he stands up for himself so, I see it as kind of good because it gives him more experience of being around kids.

Theme 3: Social Needs Associated With TBI

Social needs occurred in nearly all contexts and affected nearly all individual’s interactions with his or her environment. These included the ability to participate and be successful in typical social environments (e.g., school, work, sports). Subthemes included having physical, emotional, cognitive, and educational needs met and the access and communication of TBI-related information.

Physical needs were not frequently discussed as a need subsequent to the initial recovery process. Participants did discuss ongoing appointments for medical care, but did not indicate social impact of many of those needs. They also discussed rest due to lowered energy as a need that had to be met, especially early in the recovery process. This need often affected their participation in school, sports, and other activities.

Only Ricardo and his mother discussed the desire to change in behavioral and emotional functioning. They described emotional reactivity, anxiety, and social interaction as areas of need that were not being adequately addressed. Indeed, Ricardo’s assessment data indicated potential deficits in social cooperation, self-assertion, and social problem-solving. His self-reported social quality of life was poor. For Ricardo, anxiety and poor social ability had led to increased reclusiveness. His mother stated that even if options to address these needs were readily available, she would have a difficult time getting Ricardo to attend groups or therapy, saying, “Maybe a few years ago it might have been different, how he is now, it is hard.”

Several other participants described cognitive needs, including the need for multiple explanations and repetition to cope with changes in memory and processing, and explicit attempts to improve memory and cognition. Often, these were expressed in terms of their needs in the course of social interaction, such as when friends had to repeat themselves multiple times.

Educational needs were by far the most frequent needs discussed and often encompassed other needs. Cognitive and social deficits were discussed in terms of educational needs, as well as physical needs (e.g., occupational therapy, note taking assistance, and minimizing headache inducing activities), speech-language therapy needs, and a need for rest in the educational environment. The educational institutions provided many of the services and accommodations adolescents received, and schools met most of the educational needs mentioned by adolescents and parents. However, parents did describe difficulty getting some needs met and formalizing plans. Sometimes, parents perceived that supports were altered prematurely. Ricardo’s mother described her frustration with Ricardo being exited from speech and occupational therapy services “because he made progress,” and Reba’s mother stated that she would “have to remind the teacher, if she seems to be struggling in school, this could be why.”

Participants described some unmet educational needs in terms of lack of expertise. Ricardo’s mother expressed her experience of moving to another town with Ricardo, saying, “Of course the school doesn’t know how to work with him. I had him in a school that he was doing really well in, but then we moved.” She expressed the importance of having a teacher that understood brain injury and Ricardo’s needs, but was frustrated by the lack of options in her small town in which grades are combined, so children have the same teacher for 2 years. She reported that one teacher “understood because she herself had a head injury. She was in a bad car accident where she lost her speech. So she knew to teach him how to use his tongue.” Whereas, “the other teachers thought he was lazy and thought he was doing [poorly in school] on purpose.”

Similarly, the need for expertise was highlighted by Kelly and Reba’s mother who explained how helpful a statewide nonprofit was in helping them understand brain injury, resources, and sequelae. She said,

They called me and sent me some information on what I could do, different things I could do for the kids through the school district, they were the ones who were helpful in me knowing I could make the school do a 504 plan and gave me the tools to know what to do within the school district to make the school district comply with what my kids needed.

Furthermore, she described a hospital liaison that helped coordinate services immediately upon her daughters’ discharge from the hospital. Ricardo’s mother described a similar experience she had with a neurologist Ricardo saw, saying that,

[The neurologist] has been the most informational. I think he is the one who is the most, the one who tried to explain stuff. And he was the one who was more proactive that we get him to school, you know that he can rebound and all the things that he lost and relearn.

However, parents also described difficulties with school expertise. Reba and Kelly’s mother stated, “The school didn’t know much, so I even had the nurse, the school nurse in there, and she probably knew more than most other people, but the teachers hadn’t experienced someone with a brain injury like that before.” Natalie’s mother, however, expressed a lack of knowledge and information as both local and regional, reporting, “I felt like [state name], in general, doesn’t have the knowledge to be able to really help with brain injuries. I mean, it just doesn’t feel like there’s a lot of things out there.” She also expressed frustration with the educational services and with communication between the family and the school, saying,

At first the school liaison was saying just, “We’re going to break this down, don’t be worried, don’t get overwhelmed if she chooses that” you know, and then all of a sudden she started dumping so much that it was overwhelming [Natalie], and then she was like, “Well, you just need to drop that class then.”

Finally, the need and importance of communication between the family providers as well as communication among professionals was clearly expressed in various discussions about school and hospital liaisons. Natalie’s mother’s frustration with the school liaison was related to her inability to facilitate communication between the home and school, but also likely would have been improved by increased communication with other individuals providing care for Natalie. Kelly and Reba’s mother described positive experiences with a statewide advocacy organization and a hospital liaison connecting them with services.

Participants also described an absence of people to whom they could ask questions about brain injury. When they did have a knowledgeable person to ask, they described a feeling of not being heard. Ricardo’s mother said, “It is difficult, difficult and frustrating when the doctors don’t listen to you.” Moreover, multiple participants expressed their confusion regarding manifestation of symptoms developmentally, stating that they did not have a medical professional with whom to discuss their concerns.

On occasion, participants described some cooperation between professionals. For example, Kelly and Reba’s mother reported that a professional that gave them “brain training” went to some meetings at the school with them. However, more often, parents did not report that professionals communicated regarding issues related to the TBI subsequent to the initial reintegration into school.

Theme 4: Facilitators and Inhibitors of Intentional Changes (FIICs)

Several emergent themes described pathways between a past or present environmental condition and desired condition. These themes described either facilitators of change in the desired direction or barriers to achieving that change. Subthemes included the impact of distance and opportunity in rural areas, educational plans, feelings of uncertainty and overwhelm, and the role of self-advocacy.

Related to the availability of expertise expressed in the Social Needs theme is the difficulty several participants expressed in knowing what difficulties to attribute to the TBI. For example, when discussing Natalie’s poor decision-making, her mother stated, “Sometimes I don’t know what she needed if she is just a typical teenager or if it is the brain injury.” When asked about school performance, Reba said, “I don’t know if it is a result of the brain injury or just normal learning skills in school, but I don’t know.”

These concerns are clearly related to the previously discussed social need of expertise, and expertise is more difficult to obtain in rural areas. All participants reported that they do not travel far to their doctors, but some did travel far to receive specialty services. For example, Natalie’s mother also reported that she had a difficult time sorting out the cause of Natalie’s initial balance problems because she also had hearing loss from the accident. Natalie was seeing a hearing specialist, but she traveled over 400 miles to those appointments. Likewise, the helpful neurologist that Ricardo’s mother reported was one of few people that helped them understand his disability, and he was located over 150 miles from their hometown. Ricardo’s mother also described traveling for mental health supports and stated that she would be willing to travel for high-quality educational supports (if they were available) or groups and activities that Ricardo would participate in (but she did not identify any).

Ricardo’s mother expressed her willingness to travel partially as a result of Ricardo’s limited opportunities to socialize with peers. Ricardo’s school had combined grades, and in combined seventh and eighth grades, there were eight other students in Ricardo’s class. Ricardo and his mother expressed the difficulty that Ricardo had in finding peers with similar interests. His mother reported that his options for peers are “extremely limited and some of them are more interested in doing bad things. That does kind of make him feel more alienated.” However, Ricardo’s opportunities were further limited by his anxiety and withdrawal. His mother reported that she may be able to find groups or activities in the larger city (approximately 45 min drive), but she did not feel like Ricardo would willingly participate.

As previously discussed, communication between professionals working with adolescents was described as poor overall, including communication between medical providers and the schools. Despite the lack of communication, all adolescents received some type of academic modification or accommodations. Accommodations included shortened school day, schedule changes, and note taking assistance. Ricardo was the only one in the study who had an individualized education program (IEP), but he had that prior to the TBI that occurred when he was in third grade, and his classification was for a learning disability, not TBI. He reported that he worked on social and emotional regulation with his special educator, and his mother reported that his IEP team felt social goals were important for Ricardo. Only Kelly had a formalized written plan in accordance with Section 504 of the Rehabilitation Act (504 plan). Interestingly, Kelly and Reba’s mother reported that both girls received accommodations, but only Kelly had them formalized in a 504 plan. She stated that Reba’s teachers told her not to worry about a 504 plan; they would just implement whatever accommodation Reba needed. She described the long-term consequences of the different approaches. She noted that teachers “touched base” about the 504 plan each year with the new teacher at the beginning of the academic year; however, this did not occur with her other child and she would need to remind the teacher that she is struggling due to the TBI. Notably, Reba demonstrated areas of significant cognitive and social impairment on the measures administered in this study.

Advocacy on the part of both the adolescents and their parents brought about many changes. Kelly and Reba’s mother met repeatedly with their teachers and administrators to determine what their needs were and how to help. Reba described a scenario in which she had to either tell teachers that she needed more assistance or rely on teachers to notice. These interactions took place in front of the whole class and during normal instruction. Reba commented that she hesitated in self-advocating, because “I didn’t want to annoy them with my asking them if they could explain more.”

Participants also expressed being overwhelmed in many ways. Academic tasks were sometimes difficult to manage for adolescents. Natalie’s mother stated that Natalie’s school liaison had her do too much work too soon. Often, however, some care was taken to manage school reentry following TBI. Natalie’s mother also described being overwhelmed with Natalie’s release home from the hospital, saying,

We thought that most she will be in nursing home type of facility for a little bit . . . we didn’t even have time to set anything up . . . we were trying to wade through the paperwork that we had.

Limitations

This study is limited by a small sample size that, in the best scenario, captures the experiences of four adolescents and their families. Although inconsistent with incidence estimates, three of the four adolescents were female. All parents involved in the study were also female. We do not know the extent to which gender of participants influenced the data. Likewise, the extent to which the experiences of these participants generalizes to other rural adolescents who have had brain injuries also is unknown. As a study that relied heavily on qualitative methodology, the aim of this investigation was to explore in depth the experiences of participants. However, the pre-specified stopping criterion for recruitment of new participants, two interviews with no new themes, was met.

We recruited all participants through a statewide organization that had previously provided them with information and local resources and monitors status at regular intervals. The majority of adolescents who experience TBIs likely do not receive a service such as this. Considering the important role of expertise and resource acquisition that emerged in this study, it is likely that contact with the agency used for recruitment has made an impact on the lives of participants and recovery processes that this study could not measure without a control sample.

We consider the results of this study to be a cross-section of an interactive process between the researcher and the participants (Henwood & Pidgeon, 2003). Although participants had freedom within the interviews, we determined the original guiding questions, and follow-up questions were likely subject to investigator bias, as well as the responses of other participants in the study. Henwood and Pidgeon (2003) use the term “generation of theory” to describe this interactive process. Throughout this study, we have tried to maintain transparency in our biases and theoretical formulations, but the resulting themes and conclusions are a mutual construction reflecting a dynamic and interactive process between the researchers, the adolescents who have had TBIs, and their families.

Future Directions

Although this study provides valuable information regarding social changes in rural adolescents with TBI, this topic is in need of further study. Future studies should include larger samples, more diverse participants (e.g., fathers, different regions of the country), and different methods of inquiry. Future studies should build on the findings of this study, which support the need to assess the social processes described here. For example, FIICs emerged as integral environmental factors and seem to be less studied than needs, and definitely less studied than immediate changes. Changes in socialization likely emerge more slowly and have a distinctly different developmental pattern than the cognitive changes that are often the focus of research, thus, the facilitators and inhibitors of desired changes seem an important area for inquiry. Examples of research in these areas would be on levels of self-advocacy, the impact of social opportunities and quality of those opportunities, or the content of educational plans for rural adolescents who have had TBIs.