Experiences of Tourette Syndrome Caregivers With Supportive Communication

TS

TS is a complicated disorder that does not have a uniform presentation but frequently includes misunderstandings, stigma, and verbal and motor tics. On average, tics present around age 5 and increase in severity between ages 8 and 12 before declining in intensity for many, though not all, during the late teen and early adult years (Leckman et al., 1998). The New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS) estimates that 200,000 Americans have the disorder and one in 100 individuals has a form of the disorder such as chronic tics or childhood tics (“What is Tourette Syndrome?” 2016). The CDC reports that TS is found in all racial and ethnic groups, but males are three times more likely to develop the condition (Bitsko et al., 2014).

To receive a TS diagnosis, individuals must have both verbal and motor tics lasting for more than 1 year, although these tics may wax and wane during this time (“Tourette Syndrome Fact Sheet,” n.d.). Examples of motor tics include eye blinking, shoulder shrugging, head jerking, jumping, twirling, or touching other people or things (“What is Tourette Syndrome?” 2016). Vocal tics include sniffing, throat clearing, whistling, words or phrases, and stuttering. Two rare tics include coprolalia and copropraxia, using socially inappropriate or obscene words or gestures (“What is Tourette Syndrome?” 2016). Although tics wax and wane, some may be severe enough to inflict pain on the individual with TS and interfere with his or her social functioning and safety (“Tourette Syndrome Fact Sheet,” n.d.). Tourette’s is a lifelong condition with no cure; however, medication and therapies do provide some relief from tic symptoms for some patients (Eapen & Črnčec, 2009). Having TS can interfere with the individual’s quality of life (Eddy et al., 2011). Individuals with TS usually face two additional challenges: co-occurring mental and physical health conditions and the stigma surrounding the disorder. In addition to tics, most TS patients also suffer from attention-deficit/hyperactivity disorder (ADHD) and obsessive–compulsive disorder (OCD), which are two of TS’s comorbid conditions (American Psychiatric Association, 2013). Children with TS are also likely to have unmet mental health needs (Bitsko et al., 2014).

Furthermore, individuals with TS must navigate stigmatization caused by a lack of awareness about the condition and stereotypes and misperceptions of TS as the “swearing disease”; consequently, these children experience social stigma manifested through discrimination and isolation as well as self-stigma expressed through self-degrading comments (Malli et al., 2016). As a result, children with TS report difficulties with social relationships (Eddy et al., 2011), bullying (Zinner et al., 2012), harassment (Malli et al., 2016), and difficulty managing schoolwork and emotions in school as well as name calling, tic mimicking, and unhelpful responses from peers and teachers (Wadman et al., 2016).

The Impact of TS on Caregiver Stress

Caring for children or adolescents with chronic conditions places stress on parents. The impact of providing long-term care for children and teens with complex medical conditions can lead to feelings of isolation, economic concerns, exhaustion, and intense emotions (Kuster & Merkle, 2004). Several studies have noted that the role of the TS caregiver has not been fully examined (Goussé et al., 2016; Schoeder & Remer, 2007). Caregivers for TS children and teens face a unique burden, given the physical, mental, and social ramifications of the disorder combined with its presentation in early childhood and tic intensity during the middle school years (Bitsko et al., 2014). Some argue that caregivers for children with TS experience more stress than caregivers of children with other chronic conditions (Cooper et al., 2003). When compared with caregivers of typically developing children, caregivers of children with TS can experience more stress, especially when the ADHD and OCD comorbidities are present (Robinson et al., 2013; Stewart et al., 2015).

Ludlow et al. (2018) interviewed TS caregivers and found several shared stress-provoking experiences: coping as a child expresses a socially inappropriate tic or displays challenging behavior, misconceptions about the disease, and a lack of support and services for TS families. Furthermore, Rivera-Navarro et al. (2009) investigated sources of TS caregiver stress and found that caregivers reported feelings of guilt, concerns about stigma, and fears of missing work due to providing care. As noted above, Malli et al. (2016) identified social and self-stigma for TS patients but also noted that caregivers faced courtesy or affiliate stigma, which is stigma attached to someone close to individual. Rivera-Navarro et al. (2009) included stories from TS adolescents who reported that their parents were embarrassed when they expressed tics in public and concerned about the social consequences of the tic expression. Stress also included fears for the child’s future and social isolation (Rivera-Navarro et al., 2009) and worries about academic performance (Wilkinson et al., 2008).

Other studies examined the toll these stressors take on the caregiver’s mental and physical health. Jalenques et al. (2017) found that mothers of children with TS had higher levels of depression and scored lower on measures of vitality and social functioning than mothers of typically developing adolescents. Fathers had higher levels of anxiety and scored lower in measures of psychological health and social relationships than those in the control group (Jalenques et al., 2017). Unfortunately, the impact of caregiver stress also has consequences for individuals with TS. Families that provide a strong emotional support system can be calming and therapeutic for individuals with chronic conditions; however, caregiver situations with high stress levels create more anxiety for the patient which ultimately exacerbates their condition (Buse et al., 2014; Robinson et al., 2013). For individuals with TS, increased stress often leads to increased tic expression (Buse et al., 2014). Rivera-Navarro et al. (2014) found that health professionals reported that parents frequently overacted and worried more about tics than patients. TS patients indicated that their parents were anxious about what other individuals might think or do in response to tic expression and therefore oversupervised or urged them to hide or control their tics, a result that led to feelings of shame, insecurity, and increased stress for the TS patients (Rivera-Navarro et al., 2014). Social support expressed through supportive communication can improve an individual’s ability to cope with stress across a variety of anxiety-provoking situations (Burleson & MacGeorge, 2002; Cohen & Wills, 1985). Consequently, it can be argued that supportive communication plays a role in reducing caregiver stress which results in positive outcomes for both the parent and the child with the disorder.

Theoretical Frameworks

This study is centered on supportive communication, which is grounded in social support, an interdisciplinary field that includes sociological, psychological, and communication studies perspectives (Jones & Bodie, 2014). Specifically, this study employs the interpersonal study of health communication, which is concerned with how communication shapes attitudes and beliefs about health as well as creates and manages relationships which impact well-being (Wright et al., 2013). Although stress created by caring for a child with a chronic condition is unlikely to be eliminated, perceptions of social support are known to lower the stress level felt by caregivers, a phenomenon known as the “buffering effect” (Cassle, 1976; Cohen & Wills, 1985).

Supportive communication is the expression of social support (Jones & Bodie, 2014). Burleson and MacGeorge (2002) defined supportive communication as the verbal and nonverbal interactions expressed by individuals for the sole purpose of attempting to alleviate the psychological pain of others. Jones and Bodie (2014) explained that supportive communication focuses on the “prosocial interactions through which people express supportive intentions” (p. 371). There are two dimensions of supportive communication: emotional and informational (MacGeorge et al., 2005). Emotional communication pertains to the expression of encouraging or comforting messages, whereas informational communication relates to providing advice and offers of assistance or physical forms of help (Burleson & MacGeorge, 2002). Communication scholars have studied the influence of supportive communication across a variety of health contexts including mental health (MacGeorge et al., 2005), infertility (A. C. High & Steuber, 2014), and heredity cancer prevention (Dean & Davidson, 2018).

Evaluation of supportive communication includes both the appropriateness, helpfulness, and sensitivity of message and the impact that message had on the recipients’ attitudes, beliefs, or behaviors (Jones & Bodie, 2014). As supportive communication is intended to comfort, the context of the message is related more toward softening the emotions than solving the problem at hand. Consequently, not all supportive communication is perceived as helpful by the recipient (MacGeorge et al., 2008). Furthermore, supportive communication that does not resonate nor comfort the individual in distress can backfire, creating more harm for the caregiver and the patient (MacGeorge et al., 2008).

Few studies have examined the support needs of TS caregivers, although the studies available underscore the role social support plays as a stress reducer for the TS caregiver (Goussé et al., 2016; Ludlow et al., 2018; Schoeder & Remer, 2007). Ludlow et al. (2018) noted that TS caregivers found building relationships with other TS families as positive and helpful toward coping. Schoeder and Remer (2007) found that TS caregiver strain was related to the strength of social networks and that perceived social support partially mediated the child’s symptom severity and caregiver stress. Goussé et al. (2016) explained that TS caregivers with poor social networks also had increased scores of stress and anxiety. On the other hand, caregivers with strong social networks were more likely to engage in adaptive coping mechanisms, regardless of their anxiety and stress scores (Goussé et al., 2016). One area that has not received much attention is the role supportive communication plays in mitigating stress for caregivers of individuals with TS. Attention to supportive communication strategies geared toward this community is important because a TS caregiver’s ability to cope with stress can improve both mental and physical health outcomes for both the caregiver and the patient. As a result, the following research question is proposed:

Sampling and Recruitment

This study employed purposeful sampling which meant that, to participate, caregivers had to have a child, youth, or teen with a TS diagnosis. After receiving institutional review board approval, participants were recruited through several online support groups for TS caregivers. Ten participants responded to study invitations posted to Tic Talk, a Facebook support group for TS caregivers. Tic Talk is a closed group that was created in 2011; it currently has more than 5,000 members. One participant responded to an invitation posted to her blog post about her experiences related to caring for child with TS. The blog posted publicly and was found by a google search of “Tourette Syndrome Caregivers.” Most of the participants resided in the United States, and one participant resided in Canada. All of the participants who volunteered were female and the mothers of children with TS. To protect the privacy of the participants, they, along with their children, were given pseudonyms.

Data Collection

Semi-structured interviews via online video conferencing platforms were conducted (Lindlof & Taylor, 2019). Semi-structured interviews gave the interviewer the flexibility to genuinely have conversations with participants about their experiences. Using an interview guide instead of a script allows the researcher to adapt to the conversational style of a semi-structured interview. After providing consent to join the study, participants were asked questions about their experiences with supportive communication as the caregivers of someone with TS. They were asked questions about their experiences with family members, professionals, and friends. Probes were offered to uncover more information about how forms of supportive communication impacted caregiver experiences of well-being or to generate more examples. They were also employed to let the participant know that they were being heard. Interviews ranged from 20 minutes with participants who did not have much to say to 90 minutes with participants who were very excited to talk about this topic. Interviews were audio-recorded through the Google Voice program. The interviews were then transcribed, which yielded 38 pages of single-spaced transcripts.

Data Analysis

The data were then coded in the grounded theory tradition (Corbin & Strauss, 2015). Both authors conducted open coding and generated a list of open codes. The open codes were discussed and grouped together during axial coding. Next, during selective coding, the categories were defined and organized into the three main themes discussed next.

Struggling Is the New Normal

To understand the social support that TS caregivers receive and need, it is important to know about their lives. All participants discussed what their lives are like as TS caregivers and mothers. From this, the theme “struggling is the new normal” emerged. Within this theme, participants explained their struggles and their attempts to understand and educate themselves and others.

Participants brought up the struggle their children go through with their TS and comorbidities, but they also discussed the struggle that becomes a part of their lives as TS caregivers. One participant discussed the different diagnoses they received and ended the long list with “It’s been hard. Oh my gosh . . . it’s been rocky because . . . we were struggling . . . it’s not easy.” Several discussed the mental and emotional struggle of coping with a child with TS. Another participant realized that she needed to “just sit for a minute . . . and . . . breathe . . . grieve for this” when she was coming to terms with what the new normal would be for her and her family. Coping with some of these diagnoses and what they meant for them and their children was a struggle that became a new normal for most participants. A caregiver explained, some days “I’m stressed. I’m weepy . . . I’m having a really bad day because my daughter is having a really bad time.” Their struggle was oftentimes tied to their child’s struggle. Another participant discussed, “the emotional journey the caregiver goes on.” She said,

he’s a difficult kid to parent . . . the days can be incredibly challenging . . . the hours can be challenging . . . there’s guilt that goes with . . . thinking about how is this going to make my life more difficult.

She discussed her struggle with feelings of guilt, which was also brought up by several participants. Another part of their new normal as caregivers to children with TS, sometimes a struggle, was understanding.

Participants discussed their efforts and struggles to understand and educate themselves and others about TS. One caregiver shared, “It’s been hard . . . it’s very hard to understand what’s going on and why” when talking about her child’s diagnoses. Similarly, another participant explained “Over time we are beginning to understand.” For many caregivers, it was a struggle to understand their new normal; struggling became the new normal. When one caregiver discussed the tics her daughter experienced, she said, “that’s when we really started our journey to really understand what TS was more about.” Although, through the struggle, understanding TS made the caregivers’ lives a bit easier, the path to understanding was sometimes a struggle.

Another caregiver admitted dealing with doctors, “it’s frustrating . . . it’s terrifying because . . . I feel very frustrated.” Her frustration stemmed from her need to understand what was going on with her children and their diagnoses (she has a son and a daughter with TS). A different participant experienced frustration because of the lack of understanding from people in her life. She explained her friends, “they don’t specifically understand I think what’s is going on” and noted that she also struggled with others’ misunderstanding: “I’m dealing with a whole lot of crap right now . . . my job is not to educate you . . . I’m not and still not in a place where I can educate you.” Having to struggle to educate and understand had become the new normal in her life and this was clearly met with frustration. An additional caregiver similarly experienced frustration in relation to others. For her, “it’s exhausting to kind of have to feel like you are always having to explain where you are.” Note that it is not just her frustration with explaining things but also the sheer exhaustion of doing that on top of everything else.

Participants, in their discussion of supportive communication, painted a picture of what it was like to be a caregiver to someone with TS. According to them, struggling became the new normal in their lives. They discussed their struggles to understand what their child is going through and the struggle of getting others to understand what they were all going through. Struggling became the new normal. In this new normal, participants discussed the types of supportive communication they were offered, some that was much appreciated and some that, as MacGeorge et al. (2008) explained, resulted in more harm than good.

The Validated Caregiver

When asked, many participants noted the emotional release of social support, such as the parenting group above, and all participants quickly and easily pointed out helpful supportive communication received. Validation of the caregivers’ struggle with TS as expressed through acknowledgment, connection, answers, and professional support was among the examples of helpful social support communication provided by participants. Validation was important because of the feelings of guilt and misunderstandings about TS previously mentioned. This validation can be expressed as both an acceptance of the diagnosis and its impact on the child as well as general support for the caregiver. One caregiver said that validation could be expressed by not questioning the child’s behavior when she noted, “many simply do not know that tics are involuntary . . . they really find it hard to grasp that you shouldn’t be correcting tics.” Noting the complexity of TS, another participant feared that parents would think her children are “bad kids” and wished others would communicate patience. A different caregiver wanted people to know with TS, “there is just so much that they do not see.” She expressed a desire for others to understand the exhaustion created by managing TS and noted, “what you don’t realize is the amount of effort they’ve (the individual with TS) had to take to keep everything in check.” Participants also wanted friends and family to communicate that they see past the diagnosis. For example, one mother said, “he is a totally normal boy that does have a neurological condition that is not under his control” and added she wanted others to know that “TS has nothing to do with parenting. It’s a neurological disorder.” Similarly, another caregiver said that she wanted others to know that “she’s not just a diagnosis and TS isn’t what you think it is.” A different participant wanted others to know and appreciate that her son continuously feels “less than” but “goes through his day smiling at school and participating and getting good grades . . . it’s a tremendous accomplishment.” These acknowledgments qualified as supportive communication because they helped validate the disorder and the struggle the caregivers and children experienced.

Participants also said that other children were sources of supportive communication, especially when they indicated acceptance of the child with TS. One mother explained the happiness she felt after telling one of her son’s friends about the TS diagnosis, when the other little boy simply said “ok, but can he still play?” Participants were quick to prescribe words that would validate their role as caregivers and several noted the positive impact of general messages. One caregiver said that it was okay for friends and family to not understand TS as long as they listened and said, “I support you.” Yet another wanted to be trusted and asked for words such as “I believe you. I believe what you are going through. I understand, and it must be hard.” Acknowledgment expressed through appreciation of the caregiver’s work was another area of positive social support. Expressions of “big picture” encouragement were valued, according to participants. Another caregiver said that her parents often tell her “You are doing a great job from our perspective. He’s a happy kid. He’s a healthy kid.” A different participant said that the comments of “what a good mom I am” from her parents helped her battle her self-doubts of “I handled this wrong. I’m screwing this up.” Another mother explained that hearing she was “doing a great job” was reassurance that TS “isn’t anything that (she) created” and “(I’ve) helped him deal with it better.” These acknowledgments helped the participants feel validated.

Caregivers also found some relief in communicating with other parents of children with TS, and frequently found those caregivers online. One caregiver said that interacting with other caregivers online made her feel “less crazy” and made her realize that TS was “a bigger problem than just me.” Her relief came from witnessing the stories of other families and noted, “the things that I don’t tell other people, they were saying out loud.” Relating to other caregivers online made another participant feel less alone, and a different caregiver explained that she felt a connection in discussing tics with other parents online. She summed up the feelings of relief TS caregivers feel from connecting online when she said “just knowing that other parents have the same challenges.” Finding answers to TS problems was another area of positive social support listed by participants that came from connection with other TS caregivers. For example, watching one hundred other TS caregivers offer solutions to one caregiver who posted about her son’s eye rolling tic made one participant feel “not alone.” Learning more about how other caregivers have handed coprolalia symptoms provided one mother with a sense of relief. Ideas on therapies and recommendations for nutritionists found on online networks made another feel less isolated and introduced her to magnesium supplementation which she said “reduced (her daughter’s) tic and helped with her anxiety levels.” These connections and the knowledge that came with them were validating to caregivers.

Validation from medical professionals was also important to caregivers, though this support was frequently not received from primary care doctors or the first doctor to diagnose the condition. For one caregiver, the school psychologist made her feel better by saying “oh wow, this is what’s going on” and not “shooting down my suggestions.” A pediatric neurologist who listened to another mother and analyzed the TS from the “full umbrella perspective” made her feel the doctor “really got it.” Yet another caregiver explained that her child’s primary care doctor eased her fears because he “didn’t make a big deal out of it,” but it was a pediatric neurologist who also had TS that made a “night and day” difference for her family. Having a “successful adult (with TS) that could talk with the kids . . . and who knew the big picture” helped her child understand her condition which made the mother feel better. A different participant praised her nutritionist, who is also a psychologist, for her communication of commitment to her daughter. Referring to her as the “gold standard,” she explained that this doctor communicated hope and care when she told her “We’re never going to run out of things to try. I am in this with you.” These connections, acknowledgments, and positive reinforcements were exactly the supportive communication the participants needed to hear.

Caregivers described the type of social support that reduced stress, and articulated the type of communication that generally helped them. Moreover, all but one caregiver could pinpoint an example of positive social report received. Yet, caregivers could quickly—and in most cases without prompting—identify and explain stress-increasing social exchanges they received from family, friends, and medical professionals. These included disbelief, dismissal, and judgment which lead to feelings of isolation.

The Isolated Caregiver

Many caregivers commented that the complexity and misrepresentations of the condition promoted by entertainment media frequently leave nonimpacted individuals with a warped impression of the disorder. Other caregivers pointed out that as diagnoses are based on the observations of medical providers rather than more tangible evidence like a blood test, many friends and family had a hard time accepting the conclusion that the child had TS. As a result, many in a caregiver’s circle of influence frequently provided stress-inducing comments that denied the diagnosis. A participant said that one family member increased her stress by refuting the diagnosis and wished that there was more convincing evidence she could provide when she noted, “it’s not like there is a heart problem and they can get an EKG and say this is the problem.” Another caregiver said that she had friends second guess her experience with comments like “do you really trust this psychologist?” Similarly, a different participant described angst received from the reaction to the diagnosis from two friends. After she shared her child’s diagnosis with a friend who had experience in special education, her friend responded with “does he really? I’ve known him since he was born. Really, Tourette’s? I mean, have you had him to a neurologist?” This caregiver said that she wanted to sarcastically respond to her friend with “no, I just self-diagnosed him.” Another friend of this caregiver responded with “is it fatal?” which made her want to respond with “do I laugh at you or yell at you.” Other caregivers said that friends and family only believe the evidence of tics, which sometimes are not present because tics wax and wane and the type of tics common to TS are not those frequently presented by the media. A caregiver identified family members who questioned the legitimacy of the diagnosis because “they just have not seen tics in my son.” She noted that even members of her own family with TS expressed disbelief of her child’s diagnosis because “it’s not presenting in the same way as” their symptoms. The false belief that TS can be controlled through discipline was noted by yet another caregiver who said a family member told her, “If you just read Super Nanny and put him on the naughty step, it would be fine.” Caregivers were met with messages of disbelief when explaining what they were going through with their children. On one hand, those offering these responses might think that by questioning the diagnosis they are providing the caregiver with social support. However, participants explained that these responses were not welcomed. In fact, these messages of disbelief cause the caregivers more frustration and stress.

Related to the idea of disbelief is the expression of dismissal which includes statements diminishing the significance of the condition or expressions that are so generically positive that they cause more harm than good. A participant explained that one family member accepted the diagnosis but disdained one of the recommended treatments by saying, “they just want to label all of the kids . . . they just want to put them in a box and then medicate them with this and that.” At first look, a response like this might sound typical, as this is a conversation we hear often today. However, for a caregiver, a comment like this felt like their struggle and the seriousness of TS were being dismissed. Along the same lines, another caregiver said that her family understood the diagnosis but communicated that “it was something that was a phase and would go away” despite her recounting that her child had “a multitude of tics.” She recounted her exasperation as family and friends would respond to her caregiving struggles with “well, gosh, I hope she gets better soon,” which made her want to say, “it’s not like she has a cold.” A cold goes away, but TS does not; consequently, dismissing the severity of the diagnosis by insinuating that it would go away was not comforting to either caregiver. Yet another caregiver remembered the frustration caused by a dismissive comment from a medical provider received after she explained a new approach to managing her son’s symptoms. “You can try every diet and vitamin in the world, and it’s not going to help the disorder,” her doctor said. This caregiver said she thought to herself “that’s just horse poop” and went on to share her experiences with her son which were “if your child is well nourished, their symptoms are going to be less . . . if your child is well rested, their symptoms are going to be less.” She fought back against her doctor’s dismissal of the efforts she had been putting forth and found a way to help her child reduce the symptoms.

Several caregivers explained the well-meaning comments from friends left them feeling worse, especially when the universal statements expressed a lack of understanding and thus resulted in dismissal of their experiences. One participant remembered a friend who tried to help by saying, “God must have amazing plans for him,” which made her want to say “I really don’t care what amazing plans God has because I do not care. He’s amazing enough.”

When there was disbelief or dismissal of the condition, caregivers recounted expressions that to them indicated judgment about their parenting and expressed concerns that their children would also be appraised negatively. A participant remembered that her family was initially resistant to the diagnosis and family members made comments such as “this is being created because you are not firm enough in your parenting style.” As a result, she said, “this would put frustration in and impact my ability to be patient with his behavior.” Comments such as this shifted the onus of the diagnosis from genetics to the parent, leaving the parent feeling judged. Another caregiver said that she wanted others to know that the behaviors of an individual with TS “cannot be controlled even if the individual looks like they are in control.” She also explained,

We actually do need to have a special parenting skill and no that doesn’t mean we are lacking in other parenting skills. Suggesting that my son’s behavior might be corrected by more discipline isn’t helpful at all. We can’t discipline a disability out of these children.

A different caregiver’s response illustrates the frustration that came from communicative exchanges with others who tried to offer supportive communication by suggesting that stricter parenting might be a solution to TS. Although caregivers said judging statements hurt, several said that they were more concerned about their children receiving the brunt of misunderstandings. One mother worried that other parents would not understand her children’s struggle with sensitivities and impulse and would instead think that “they’re bad kids” and leave them off playdate and birthday party lists. Another caregiver said that parents of children with ADHD were often judged when their children had a meltdown and, though not helpful, she could take the comments undermining her parenting. However, she noted that children with TS are judged more than the parents—a phenomenon that broke her heart. She recounted an experience with her child who has the less common but more remembered symptom of coprolalia:

When your kid is walking down the Home Depot aisle sounding like he is yelling “fuck, shit, ass” and he’s jumping, I realized (through the looks given by other customers) that he is the one being judged, not me. And, that I couldn’t take.

For caregivers, expressions of disbelief, dismissal, and judgment frequently led to feelings of isolation. Caregivers communicated these feelings of isolation as exhaustion and loneliness. One explained, “it’s exhausting to always have to explain where you are” and noted that other caregiving conditions have automatic support responses from friends and family. “It (TS) is quite different with the type of support you see. Nobody offers you a casserole or anything.” Another also commented on bevy of specialists a TS family encounters and noted that the family members really cannot help even when they express an interest. She told a story of one family member who “doesn’t quite comprehend what (TS) entails” and she can’t take her up on her offer of taking her child to the doctors because “I have to take notes” and “you don’t know what will come up (during the appointment).” Yet another noted loneliness when she said, “there really can’t be a friend that understands unless they are actually going through it.” She said that the lack of understanding expressed by friends and family makes her feel “like (she) is in her own little world” which is “really challenging.” Ultimately, some supportive communication used to offer comfort to caregivers resulted in caregivers feeling isolated.

Most of the supportive communication that failed came from places of misunderstanding by family and friends. This further highlights that the TS caregiver struggle is one marked by efforts to understand and educate. In conversations with TS caregivers about supportive communication, they explained that supportive communication that validates their experiences is helpful and supportive communication that questions their experiences is isolating.

Suggestions for Practice

Understanding the types of supportive communication that TS caregivers find helpful and when those messages are needed advances supportive communication research but can also inform practice in terms of outreach strategy. For example, participants describe their caregiving as a struggle—a finding that suggests phases or even cycles of acceptance, education, and fatigue. As a result, the types of messages caregivers need may also depend on where they are in that struggle. For example, caregivers facing a diagnosis may need more big picture messages of support and encouragement, whereas those well versed and experienced caring for a child with TS may be more interested in answers and expressions of respect from medical providers. Subsequently, an area of social support that reflected this dynamic was social media; participants said that they visited social networks early on in the diagnosis but a few noted that, as time continued, those initial feelings of validation morphed into feelings of helplessness as they weeded through more and more information. This finding suggests that those charged with outreach for TS families should be aware of potential caregiver online information fatigue and understand that much of their active audience may be the newly diagnosed. At the same time, a simple “You are doing a great job,” could work wonders for a caregiver at diagnosis but that same broad message of general support might be less helpful if delivered to a caregiver with many years under her belt who is looking for specific information. Finally, most of the caregivers explained what they would have said in response to a hurtful comment and some explained indirect actions they had taken such as spending less time with a specific family member or posting information on social media about the diagnosis. Consequently, caregivers may not be forthcoming to medical providers, friends, and family about the hurt they feel.