In the United States, the frequency of chronic illnesses among children and adolescents is high, with more than 40 percent of individuals having at least one chronic illness (Centers for Disease Control and Prevention [CDC], 2021). A chronic illness typically refers to a health condition that lasts anywhere from three months to a lifetime. The most frequent illnesses experienced by children and adolescents include asthma, diabetes, cystic fibrosis, cerebral palsy, epilepsy, and food allergies. Prevalence rates of these illnesses are common among both males and females, with some illnesses being more common among males, for example, type 1 diabetes (Bullard et al., Reference Bullard, Cowie, Lessem, Saydah, Menke, Geiss, Orchard, Rolka and Imperatore2018), cystic fibrosis (Cystic-Fibrosis.com, 2019), cerebral palsy (CDC, 2021). and epilepsy (Hu et al., Reference Hu, Shan, Du, Ding, Shen, Wang, Ding and Xu2021) and others more common in females, such as asthma (Fuseini & Newcomb, Reference Fuseini and Newcomb2017) and food allergies (Afify & Pali-Scholl, Reference Afify and Pali-Scholl2017). Children and adolescents with chronic illnesses are reported to experience lower quality of life (Pinquart, Reference Pinquart2020) and health quality of life (Silva et al., Reference Silva, Pereira, Otto, Ravens-Sieberer, Canavarro and Bullinger2019), lower psychological functioning (Pinquart & Shen, Reference Pinquart and Shen2011), parent–child relationships that are less warm and accepting (Pinquart, Reference Pinquart2013), and lower rates of meeting developmental milestones associated with adulthood than those without a pediatric chronic illness (Pinquart, Reference Pinquart2014).
The social context of managing a pediatric chronic illness is especially important, as social support from parents, friends, and romantic partners can offset the deleterious effects of a chronic illness (Oris et al., Reference Oris, Seiffge-Krenke, Moons, Goubert, Rassart, Goossens and Luyckx2016). Youth who experience support from one or both parents and/or a friend experience better psychological functioning than those lacking support from either parents or peers (Helgeson et al., Reference Helgeson, Palladino, Reynolds, Becker, Escobar and Siminerio2014). An important way that youth are able to get the support they need is through disclosing to others that they have a chronic illness and their needs regarding their illness.
Disclosure in the chronic illness literature typically refers to two types of processes (see also Finkenauer et al., Chapter 12 in this volume). First, disclosure is defined as communicating to others that one has an illness and the nature of that illness. Such disclosures typically involve self-disclosures regarding private information that may not be obvious to friends, romantic partners, and acquaintances (Tilton-Weaver et al., Reference Tilton-Weaver2014). Parents are typically well aware of the chronic illness condition as they are involved in seeking health care for diagnosis and management. Second, more routine disclosure (e.g. whether medication was taken, illness symptoms experienced) occurs to close others about problems in illness management (Berg, Queen, et al., Reference Berg, Butner, Wiebe, Lansing, Osborn, King, Palmer and Butler2017). As parents are most frequently the primary sources of instrumental and emotional support for chronic illness management, such disclosures have been studied primarily regarding parents and the ways that parents solicit information from their child (Berg, Queen, et al., Reference Berg, Butner, Wiebe, Lansing, Osborn, King, Palmer and Butler2017; Kelly et al., Reference Kelly, Berg, Lansing, Turner, Munion, Tracy and Wiebe2019). In the present chapter, we will refer to disclosures as spontaneous disclosures of information about chronic illnesses to those in the social network. We take an information-management perspective (Tilton-Weaver, Reference Tilton-Weaver2014), where adolescents and young adults hold the key to sharing information about their illness with others. From a social domain theory perspective, such disclosures are likely considered by the person with chronic illness as in the personal domain, involving private aspects of the adolescent or emerging adult’s life (Smetana, Reference Smetana, Killen and Smetana2006), although research has not examined this specifically. From the parent’s perspective, such disclosures may be more likely to be seen as prudential issues dealing with safety and health. As such, these issues may be multifaceted, involving more than one domain.
In this chapter, we review work on disclosure across chronic illness conditions, focusing on the time period of adolescence and emerging adulthood. This literature focuses nearly exclusively on self-disclosures to others (beyond parents) that the person has a chronic illness and the strategic nature of what is revealed and to whom. We then focus our discussion on routine disclosures that occur between parents and adolescents and young adults regarding problems with self-management in the context of type 1 diabetes, as there is little research on routine disclosure with other illness conditions. We conclude by linking this work to broader models of disclosures for health decisions (Greene et al., Reference Greene, Magsamen-Conrad, Venetis, Checton, Bagdasarov and Banerjee2012), draw some implications of this work for interventions with adolescents and emerging adults with chronic illness conditions, and suggest future directions for research.
Self-Disclosure Regarding Physical Illness
Research on self-disclosure regarding chronic illness conditions has covered a wide variety of illnesses (e.g. spina bifida, asthma, diabetes, cancer, epilepsy) largely examining adolescents and emerging adults in the United States among White and Latino families (unless noted in the text, the samples were largely White). The literature on disclosure across these conditions has demonstrated that disclosing to people in the social network is associated with benefits such as reduced physical symptoms, increased self-advocacy, and higher confidence as well as risks, such as anxiety (Benson et al., Reference Benson, O’Toole, Lambert, Gallagher, Shahwan and Austin2015). However, differences among illness conditions affect the frequency of disclosure, including the severity of the illness and the perceived visibility of the illness (Joachim & Acorn, Reference Joachim and Acorn2000; Kaushansky et al., Reference Kaushansky, Cox, Dodson, Mcneeley, Kumar and Iverson2017). Individuals with a visible illness (e.g. severe cerebral palsy) have less control over whether they disclose their illness than individuals with an illness that is both visible and invisible (e.g. epilepsy or diabetes) or invisible (inflammatory bowel disease). For example, patients with cystic fibrosis may have more difficulty concealing symptoms (e.g. excessive coughing, low body weight) or daily treatments they must engage in that sometimes occur in the presence of others (Kaushansky et al., Reference Kaushansky, Cox, Dodson, Mcneeley, Kumar and Iverson2017). In more severe cases of pediatric epilepsy, patients were more likely to disclose if they felt their illness was severe enough that people in their life would find out before they disclosed, even though epilepsy is not always visible (Benson et al., Reference Benson, O’Toole, Lambert, Gallagher, Shahwan and Austin2015).
In general, this literature is qualitative in nature, with work directed towards understanding who emerging adults and adolescents disclose to as well as what information they disclose (Kaushansky et al., Reference Kaushansky, Cox, Dodson, Mcneeley, Kumar and Iverson2017). Across illness conditions, parents are described as the person individuals are most likely to disclose to, in part, because they are actively engaged in daily illness management activities and have lived through diagnosis and treatment with the adolescent. When considering individuals other than parents (e.g. siblings, friends; see Campione-Barr et al., Chapter 14 in this volume), young adults described being more strategic in terms of what information and how much information they would disclose. Individuals described critically analyzing the benefits and risks of disclosing certain information among these different social relationships. Qualities that were related to greater likelihood of disclosing information to someone included perceived levels of trust or viewing the illness as a shared experience. Most individuals who reported a sexual partner reported that they had disclosed their condition to the person and felt it necessary to foster intimacy in the relationship. Also, having a peer who is living with a similar chronic illness increases the likelihood of disclosure. However, when an individual believes that they may be rejected, pitied, or judged for information they share, they may withhold further disclosure (Kaushansky et al., Reference Kaushansky, Cox, Dodson, Mcneeley, Kumar and Iverson2017).
A recent review of the literature on adolescents’ disclosure to their peers revealed that there is less disclosure to peers as compared to parents, as well as less implementation of different information-management strategies (Pathmalingam et al., Reference Pathmalingam, Moola and Woodgate2022; note this review included several studies where diverse adolescents were sampled including Black and Latino adolescents). Most of the literature has looked at primarily open disclosure versus concealment among adolescents. However, Pathmalingam et al. identified other information-management strategies that may be used depending on the nature of the social relationship. Passive disclosure is a common information-management strategy among more visible illnesses, such as diabetes. This strategy is indirect and occurring through other people (e.g. illness being disclosed by parents in childhood) or someone noticing health behaviors associated with illness management (e.g. administering medication). Another common strategy among adolescents is selective/partial disclosure. This type of disclosure involves strategic management of what information should be told to whom and when. This provides adolescents with a sense of control over the narrative they share with others. For example, an individual may choose to disclose more information with a friend they perceive as more trustworthy in a given circumstance. Preventive disclosure involves sharing information around educating peers on aspects of their illness and what to do in the case of an emergency (Pathmalingam et al., Reference Pathmalingam, Moola and Woodgate2022).
When disclosing to peers, the most commonly used information-management strategy was concealment (Pathmalingam et al., Reference Pathmalingam, Moola and Woodgate2022). Adolescents and young adults made the decision to conceal the illness altogether for a number of different reasons. First, individuals described wanting to feel normal. Many adolescents expressed that they hesitated to disclose to peers because they did not want to be seen as different from others. Second, individuals described wanting to avoid negative reactions from others. They reported that the receiver of disclosure might question whether they are being honest about their illness (Woodgate et al., Reference Woodgate, Tennent, Barriage and Legras2022). Individuals also reported facing discrimination or stigma from family, peers, and colleagues (Joachim & Acorn, Reference Joachim and Acorn2000; Kaushansky et al., Reference Kaushansky, Cox, Dodson, Mcneeley, Kumar and Iverson2017).
The process of self-disclosure was described by many adolescents and young adults as exhausting and taking extensive thought and effort (Kaushansky et al., Reference Kaushansky, Cox, Dodson, Mcneeley, Kumar and Iverson2017; Pathmalingam et al., Reference Pathmalingam, Moola and Woodgate2022). As individuals develop through adolescence and emerging adulthood, the responsibility of disclosing typically shifts from parent/guardian to the adolescent. As a seventeen-year-old with rheumatoid arthritis stated, “When I was younger all the teachers were told that I had arthritis, so they were very understanding. Like if I couldn’t go to gym class or whatever and that would be okay with them. But when I got to high school and none of the teachers knew. I never said anything” (Woodgate et al., Reference Woodgate, Tennent, Barriage and Legras2022, p. 524). For emerging adults with type 1 diabetes, it can be easier to conceal the illness than consistently inform or correct others on how the illness affects them specifically and the support that is best (Gray et al., Reference Gray, Campbell, Berg and Wiebe2021).
A qualitative examination of disclosure and social support among university students with type 1 diabetes, a time of transition for young adults, revealed that disclosure about diabetes is one that is carefully considered and more frequent when others share the lived experience of diabetes (Habenicht et al., Reference Habenicht, Gallagher, O’Keeffe and Creaven2018). Individuals described initially being observant of others to understand how they might react to the news of their diabetes and avoiding self-disclosure when individuals were expected to overreact or to have a negative reaction to type 1 diabetes. Gender differences existed (although gender differences are not commonly reported in this literature), with men describing disclosure at work and university as not meeting their privacy needs and also self-disclosure as unnecessary: “I don’t like to bring it up [in college] …, if you tell someone maybe they will feel like bad for you … and I don’t want that because that just makes you weak” (p. 5). Women were more likely to view disclosing to employers and roommates as an important thing to do. They also trusted their peers to respond with support. Individuals disclosed their diabetes to seek out tangible support and also for safety reasons. When describing individuals who facilitated disclosure, individuals described that other individuals with type 1 diabetes were invaluable for understanding what diabetes involved and getting the kind of support that they needed. The importance of maternal support for these young adults was emphasized in the description of mothers, with adolescents stating that mothers often came the closest to a person who shared their experience of diabetes.
When making the transition to work environments, the workplace is a new context in which adolescents and emerging adults feel they may be judged as inadequate for a job if they have an illness flare or have to request accommodations. A study of employers’ reactions to disclosure of chronic illness and requests for accommodations during the job interview process (Ameri & Kurtzberg, Reference Ameri and Kurtzberg2022) indicates that disclosure comes with costs. Disclosing a chronic illness at the beginning of an interview or at the end of an interview lowered the candidate’s perceived employability compared to those who did not disclose. Research on disclosing to coworkers and employers about type 1 diabetes in a large Finnish national cohort (Hakkarainen et al., Reference Hakkarainen, Munir, Moilanen, Räsänen and Hänninen2018) indicated that across all ages, roughly 52 percent of adults had disclosed their diabetes to a colleague, 45 percent to occupational health personnel, and 28 percent to their line manager (Hakkarainen et al., Reference Hakkarainen, Moilanen, Hänninen, Räsänen and Munir2017). Young adults (ages eighteen to twenty-four) were more likely to conceal their diabetes from their managers than older individuals. Reasons for concealment included being perceived as weak, concerns about job discrimination, unwanted attention, being seen as a person who uses their illness to seek job accommodations, and losing privacy. This research highlights the continual struggle of deciding to whom one should disclose, when disclosures should occur, and what the risks and benefits of disclosing may be.
Self-Disclosure regarding Psychological Illness
Although most of the literature on self-disclosure focuses on pediatric chronic physical illnesses, there is a growing understanding in the literature that disclosure processes are much more difficult when a psychological illness is involved. In contrast to physical illnesses, where self-disclosure is less necessary with parents, adolescents are much more strategic about psychological illnesses, even in terms of disclosing symptoms to parents (Rasmussen et al., Reference Rasmussen, Shannon and Pitchford2022). Qualitative interviews from focus groups revealed that there are many reasons for the lack of disclosure, including that problems in the parent–adolescent relationship might be perceived as contributing to psychological symptoms. Further, parents were described as potentially lacking empathy toward psychological symptoms, in part due to parents not having experienced mental health symptoms themselves and/or having low mental health literacy. Many individuals described the lack of parental empathy as a form of mental health stigma, indicating that parents were uncomfortable in understanding differences between themselves and their siblings. Rasmussen et al. (Reference Rasmussen, Shannon and Pitchford2022) suggested that adolescents’ mental health symptoms themselves may be affecting their views of the receptiveness of their parents. Consistent with the broader disclosure literature (Hamza & Willoughby, Reference Hamza and Willoughby2011; Soenens et al., Reference Soenens, Vansteenkiste, Luyckx and Goossens2006), high-quality parent–child relationships were associated with adolescents’ greater disclosure to parents about psychological symptoms. Many adolescents in this study indicated that they would discuss psychological symptoms with their parents only when their symptoms were severe or only as a last resort. This reluctance to disclose to parents is quite problematic, as it is essential to help adolescents seek the treatment that they need.
Even in adulthood, disclosure of a psychological illness beyond parents to peers, romantic partners, and coworkers may also be much more difficult than disclosures regarding a physical illness. A systematic review on disclosure of a mental illness on the job (Brohan et al., Reference Brohan, Henderson, Wheat, Malcolm, Clement, Barley, Slade and Thornicroft2012) indicates that disclosing that one has a psychological illness is associated with greater stigma and discrimination than disclosing that one has a physical illness.
In sum, self-disclosures regarding one’s chronic illness condition to peers, friends, and coworkers are challenging. Individuals have serious concerns about the negative reactions of others, many of which are borne out with respect to stigma and discrimination. Although most of the research in this area deals with common pediatric chronic physical conditions, there is some suggestion that disclosure is even more difficult for psychological conditions.
Routine Disclosure Processes in Type 1 Diabetes among Parents and Adolescents/Emerging Adults
In our own work, we have examined the routine disclosures that occur between parent and child during adolescence and emerging adulthood regarding daily self-management behavior for type 1 diabetes. In this section, we first provide a brief introduction to the management demands of type 1 diabetes and then describe our work across adolescence and emerging adulthood involving these disclosures. We also briefly describe our preliminary work examining disclosure during emerging adulthood to individuals beyond parents (friends, romantic partners).
Context of Type 1 Diabetes
Type 1 diabetes is a prevalent chronic illness affecting some 2.15 of every 1,000 children and adolescents in the United States (Lawrence et al., Reference Lawrence, Divers and Isom2021), caused by an autoimmune-mediated deficiency of insulin secretion (Kaufman, Reference Kaufman2012) by the pancreas. Type 1 diabetes is more common among non-Hispanic White youths (70 percent) but is increasing within Hispanic youths (16 percent currently) (Dabelea et al., Reference Dabelea, Mayer-Davis, Saydah, Imperatore, Linder, Divers, Bell, Badaru, Talton, Crume, Liese, Merchant, Lawrence, Reynolds, Dolan, Liu and Hamman2014). It is a serious illness that is associated with substantial decreases in longevity for those diagnosed during childhood (Pambianco et al., Reference Pambianco, Costacou, Ellis, Becker, Klein and Orchard2006). The goal of treatment is to achieve target blood glucose that avoids both low and high blood glucose. This is accomplished through multiple adjustments throughout the day of the amount and timing of insulin, while also checking blood glucose, either through a meter or through monitoring a pump or continuous blood glucose monitor. These adjustments are also coordinated with the timing and amount of food intake and the frequency and intensity of physical activity. Engaging in self-care behaviors related to this daily and demanding regimen is crucial, as it promotes blood glucose that is more within targets, which decreases the possibility of long-term and irreversible complications of the disease, such as kidney problems, retinopathy, and cardiovascular disease (Hood et al., Reference Hood, Peterson, Rohan and Drotar2009).
Engaging in these self-care behaviors is especially difficult during adolescence and young adulthood (King et al., Reference King, Berg, Butner, Butler and Wiebe2014), as adolescents take increasing responsibility for their diabetes management (Wiebe et al., Reference Wiebe, Chow, Palmer, Butner, Butler, Osborn and Berg2014). However, diabetes management is better when parents are more involved (Berg, Butner, et al., Reference Berg, Butner, Wiebe, Lansing, Osborn, King, Palmer and Butler2017). Better diabetes management, including both higher self-care and lower HbA1c (a metric of average blood glucose levels over two to three months that is the gold standard for management, with lower numbers reflecting blood glucose that is more on target) occurs in the context of warm and accepting parent–child relationships (King et al., Reference King, Berg, Butner, Butler and Wiebe2014). Such relationships are ones where parents are knowledgeable about adolescents’ general and diabetes-specific activities (Helgeson et al., Reference Helgeson, Vaughn, Seltman, Orchard, Becker and Libman2018) and can provide support when problems arise (Butner et al., Reference Butner, Berg, Munion, Turner, Hughes-Lansing, Winnick and Wiebe2018). Key processes for keeping parents “in the know” about their adolescent’s diabetes self-care involve disclosure by the child to the parent and parents’ solicitation of information from their child.
Disclosure to Parents across Adolescence and Emerging Adulthood
Our group has examined the extent to which US adolescents (ages ten to seventeen, largely White) and early emerging adults (ages eighteen to twenty-two, 75 percent White, 14 percent Hispanic, and 5.8 percent Black, consistent at the time with national representative samples) disclose information about their diabetes to mothers and fathers, what they keep secret, and also whether parents solicit information. We have examined disclosure and solicitation through surveys as well as daily diary methods. In our initial work in this area, boys reported greater disclosure to fathers than did girls, with no gender differences in disclosure to mothers. Greater adolescent disclosure to parents was related to adolescents’ perceptions that parents were more knowledgeable about their diabetes management and moderately negatively correlated with secrecy (Osborn et al., Reference Osborn, Berg, Hughes, Pham and Wiebe2013). When adolescents reported keeping secrets from their parents, adolescents reported that their parents were less knowledgeable. Older adolescents reported less disclosure to and keeping more secrets from both mothers and fathers. Greater disclosure to mothers (but not fathers) was associated with better self-care but only when adolescents reported a low level of keeping secrets from mothers. Greater disclosure to fathers (but not mothers) was associated with better HbA1c, only when adolescents reported a low level of keeping secrets from fathers. Thus, disclosure was associated with better diabetes management but primarily when individuals reported low levels of keeping secrets from parents.
Tucker et al. (Reference Tucker, Wiebe, Main, Lee and White2018) have compared these same disclosure processes among Non-Hispanic White (NHW) and Hispanic/Latino families with an adolescent with type 1 diabetes. Adolescents (ages ten to fifteen) were largely born in the United States and were second generation (57 percent, mothers born outside the United States) or third generation (31 percent, mothers born in the United States), with Mexico as the largest country of origin (84 percent of the Latino sample). Structured interviews and survey assessments were included to assess differences in disclosure processes, as well as how disclosure, secrecy, and knowledge were associated with diabetes outcomes. Interviews revealed that adolescents reported that the most frequent way their parents learned about their diabetes management problems was by their disclosure to their parent. Both groups disclosed more to mothers than to fathers, with NHW adolescents disclosing more to fathers than Latino adolescents. Disclosure to mothers was associated with lower HbA1c and higher self-care even when controlling for adolescents’ perceptions of maternal knowledge. Similar results were found for adolescents’ perceptions of fathers. These results were very comparable across NHW and Latino families.
We have also examined disclosure processes between parents and emerging adults, a time of development deemed a high-risk time for diabetes management (Weissberg-Benchell et al., Reference Weissberg-Benchell, Wolpert and Anderson2007). Emerging adults experience high diabetes distress (Wentzell et al., Reference Wentzell, Vessey and Laffel2020) and their highest lifetime HbA1c (Miller et al., Reference Miller, Foster, Beck, Bergensta, DuBose, DiMeglio, Maahs and Tamborlane2015), with only 17 percent meeting American Diabetes Association recommendations for HbA1c levels (Beck et al., Reference Beck, Tamborlane, Bergenstal, Miller, DuBose and Hall2012). We examined disclosure to mothers and fathers yearly beginning in the senior year of high school. No significant declines in disclosure to mothers or fathers were found across time (Berg et al., Reference Berg, Wiebe, Lee Tracy, Kelly, Mello, Turner, Butner, Munion, Mansfield, White, Murray and Suchy2019), despite the fact that adolescents reported significant declines in mothers’ and fathers’ knowledge of their diabetes. Disclosure to mothers and fathers was associated with better HbA1c across emerging adulthood for individuals who had lower executive function abilities.
We expanded our examination of disclosure processes by adding daily diary assessments of disclosure and solicitation to our survey measures. In addition, as emerging adulthood is a time when individuals are less frequently in the daily context of their parents, we sought to understand whether disclosure could occur via methods other than face to face contact (e.g. email, text). Daily disclosure and solicitation processes were examined at two time points: when late adolescents were in their senior year of high school (Berg, Queen, et al., Reference Berg, Butner, Wiebe, Lansing, Osborn, King, Palmer and Butler2017) and one year later (Kelly et al., Reference Kelly, Berg, Lansing, Turner, Munion, Tracy and Wiebe2019) during early emerging adulthood. Disclosure was not the norm on a daily basis to either mothers (it occurred on 27 percent of days in senior year and 24 percent of days one year later) or fathers (it occurred on 19 percent of days in senior year and 18 percent one year later). Solicitation was somewhat more frequent than disclosure for mothers (occurring on 33 percent of days in adolescents’ senior year and 28 percent one year later) and fathers (occurring on 24 percent of days in senior year and 17 percent one year later). Multilevel models indicated that on a daily basis, disclosure occurred on days when adolescents reported that their parents also solicited information. Solicitation by parents is important, as research on typically developing adolescents indicates that a frequent reason for adolescents’ partial disclosure is that they “tell only when asked” (Guo et al., Reference Guo, Killoren and Campione-Barr2022). Disclosure was more frequent on days when adolescents reported face-to face contact. In the senior year of high school, disclosure to mothers (but not to fathers) was associated with better adherence to their diabetes care regimen. In the year after high school, when roughly 50 percent of emerging adults were living away from their parents, disclosure largely occurred during face-to-face contact with parents. Individuals engaged in more self-care behaviors on days that they disclosed to mothers, and disclosure was similarly beneficial for those living in or outside of the parental home (Kelly et al., Reference Kelly, Berg, Lansing, Turner, Munion, Tracy and Wiebe2019).
Disclosure as Part of a Larger Process of Social Regulation
We have used our diary data to examine how disclosure may be part of a larger process of social regulation, whereby adolescents and emerging adults get the support that they desire for their diabetes management. During both late adolescence (Berg, Queen, et al., Reference Berg, Butner, Wiebe, Lansing, Osborn, King, Palmer and Butler2017) and early emerging adulthood (Kelly et al., Reference Kelly, Berg, Lansing, Turner, Munion, Tracy and Wiebe2019), we found that on days in which adolescents disclosed to parents about their diabetes, they reported that their parents were more knowledgeable about their diabetes, parents were more likely to provide help for their diabetes, and individuals engaged in fewer self-regulatory failures (emotional and cognitive failures in monitoring their blood glucose) and better self-care.
Using a dynamical systems framework, we captured how adolescents’ perceptions of mothers’ and fathers’ disclosure, knowledge, and support were part of a coordinative structure of social regulation that moved together across time (Butner et al., Reference Butner, Berg, Munion, Turner, Hughes-Lansing, Winnick and Wiebe2018). For instance, when changes occurred across days toward greater disclosure, parents’ knowledge and helpfulness also increased. We found that adolescents’ perceptions of social regulation with mothers was coordinated separately from their perceptions of social regulation with fathers, as opposed to one large coordinative structure for how parents were involved. In the year subsequent to the senior year of high school, a similar coordinative structure was found with social regulation organized by parent (mothers versus fathers, see Munion et al., Reference Munion, Butner, Kelly, Wiebe, Turner, Lansing and Berg2020). In addition, we examined how social regulation and self-regulation (regulating positive and negative affect, regulating cognition to avoid self-regulatory failures, and daily self-care behaviors) moved together across time and examined whether different classes of coordination were linked to HbA1c. Two classes were found, one involving more connections between self- and social regulation and the other where adolescents’ self-regulation was not connected with their social regulation. The class involving greater connections between social- and self-regulation had better HbA1c and executive function and also reported more disclosure, more parent helpfulness, and greater parent knowledge. We interpret such findings to mean that greater interdependence in early emerging adults’ type 1 diabetes with parents is important for maintaining this difficult illness regimen.
Disclosure Processes beyond the Parent–Child Relationship
As emerging adults begin to expand their social network for type 1 diabetes beyond their parents, disclosure processes (both self-disclosure regarding their chronic illness condition as well as more routine disclosures) can occur with siblings, friends, romantic partners, coworkers, and also health care providers. There is a significant gap in the literature at the present time in terms of disclosure processes beyond parents. Our own qualitative work with a small number of families where multiple members of the family had type 1 diabetes indicates that when their siblings also had diabetes, individuals with type 1 diabetes disclosed to their siblings about their problems with diabetes behaviors. Such siblings were a source of problem-solving regarding challenges in daily self-management (Litchman et al., Reference Litchman, Campbell, Porter, Tracy, Allen and Berg2022).
Our qualitative work with emerging adults indicates that they share different kinds of information with individuals whom they perceive as helpful versus unhelpful. Individuals described sharing diabetes health information to those who are helpful and trusted (Gray et al., Reference Gray, Campbell, Berg and Wiebe2021). For instance, one person described disclosing specific self-management information to a girlfriend, “the information has gotten a lot more specific, recently, now that she’s been learning about it. So, uh, now I’ve been telling her kind of like, specific, uh, blood glucose levels, and uh, like carb counts” (p. 17). However, when individuals were described as unhelpful, individuals most frequently described sharing general diabetes information like when they were eating, and they also actively avoided disclosing personal information. As one individual described, “Yeah, it’s super vague. I’ll just be like “I have type 1 diabetes, I got it when I was 13. Don’t worry about it” (Gray et al., Reference Gray, Campbell, Berg and Wiebe2021, p. 7).
In sum, our research on routine disclosures between youth and parents reveals that disclosure by youth, as well as solicitation by parents regarding diabetes management, is a crucial way that parents are able to stay knowledgeable about diabetes management at a time when youth are increasingly independent from parents in their daily health behaviors. Such parental knowledge appears to be important in allowing them to support their child in a way that is beneficial for daily diabetes management. During the period of emerging adulthood, disclosure processes are still important; however, decreased frequency of daily face-to-face contact may present some challenges for families to engage in these important processes.
Implications
The literature on disclosure among adolescents and young adults with chronic illness is at an early stage of development, with most of the literature on self-disclosures qualitative in nature and most of the literature on routine disclosures between parents and youth with chronic illness focusing on type 1 diabetes. In this section, we briefly explore models of disclosure from the health decision-making literature that could be helpful in research on self-disclosure and routine disclosures and inform interventions for youth and individuals in their social network. We also make suggestions for future research in this area.
Models to Guide Disclosure Research on Chronic Illness Conditions
Much of the literature reviewed thus far has drawn from models of disclosure or information management based in the adolescent developmental literature regarding how parents come to know about their adolescent’s life (Tilton-Weaver, Reference Tilton-Weaver2014). Additional models of disclosure, such as the Health Disclosure Decision-Making Model (Greene et al., Reference Greene, Magsamen-Conrad, Venetis, Checton, Bagdasarov and Banerjee2012) and the Revelation Risk Model (Afifi & Steuber, Reference Afifi and Steuber2009), exist in the communications literature (see Afifi & Afifi, Reference Afifi and Afifi2020). These models generally frame decisions as to whether to disclose or keep secret information based on a person’s assessment of the balance of costs and benefits of doing so. An important contribution of the literature based on these models is that disclosure regarding health information is viewed not as a one-time event, but that as new information becomes available regarding the prognosis or new symptoms, initial disclosures might not predict the frequency or depth of subsequent disclosures (Checton & Greene, Reference Checton and Greene2012). An in-depth review of these models is beyond the scope of the current chapter, but we will go into detail regarding the Health Disclosure Decision-Making Model to illustrate some of the implications of these models for future research on disclosure regarding health conditions and problems with self-management related to those conditions.
The Health Disclosure Decision-Making Model includes three factors that involve aspects of a person’s diagnosis or the information that a person considers disclosing as well as aspects of the receiver of the potential disclosure. First, one considers the information to be disclosed with respect to its perceived stigma, prognosis, symptoms, preparation, and relevance. Second, the person evaluates their relationship with the potential receiver of the disclosure, the person’s anticipated reaction, and the person’s confidence in the receiver’s response. Finally, the person’s perceived disclosure efficacy is also considered. Research from these models verifies several of the links among these factors (Greene et al., Reference Greene, Magsamen-Conrad, Venetis, Checton, Bagdasarov and Banerjee2012) and the amount and breadth of disclosure (Checton & Greene, Reference Checton and Greene2012). These factors also predict the depth of disclosure for information that was disclosed, as well as the likelihood of disclosure for information that was not disclosed. When differences occurred for information that was disclosed versus not disclosed, individuals overestimated unpleasant responses from the receiver for information that was not disclosed (Greene et al., Reference Greene, Magsamen-Conrad, Venetis, Checton, Bagdasarov and Banerjee2012).
Intervention Implications
Given the value of disclosure in eliciting social support from others and facilitating the type and amount of support that is desired, interventions are needed for adolescents and young adults living with a chronic illness. Interventions could be especially beneficial at this time of development, as adolescents and emerging adults are increasingly navigating new social contexts (Arnett, Reference Arnett2000). A peer-based intervention with individuals with diabetes and their best friends was successful in increasing friends’ knowledge and support for diabetes (Greco et al., Reference Greco, Pendley, McDonell and Reeves2001). Although this study did not explicitly examine disclosure, one can imagine that disclosure might increase as friends become more knowledgeable about one’s illnesses.
Individuals often anticipate that disclosures will have more negative consequences than they actually have (Greene et al., Reference Greene, Magsamen-Conrad, Venetis, Checton, Bagdasarov and Banerjee2012). This was also a theme coming from Kaushansky et al.’s (Reference Kaushansky, Cox, Dodson, Mcneeley, Kumar and Iverson2017) qualitative analysis. They found that although many young adults expressed a fear of rejection from disclosures, few actual instances of rejection and isolation were described in their experiences. A recent hypothetical vignette study indicated that peers responded positively to disclosures from their peers, feeling happy that their friend trusted them with a self-disclosure and willing to support friends with illness conditions (Igler et al., Reference Igler, Austin, Sejkora and Davies2024). Suggestions for clinical interventions include those made by Ledford et al. (Reference Ledford, Villareal, Williams, Cafferty, Jackson and Seehusen2022) that clinicians talk to patients both at diagnosis and across time about the benefits of disclosure and of social support more generally. Training and practice in disclosure to others could be incorporated as part of diabetes education, especially transition programs that prepare adolescents for transitioning to adult care (Weissberg-Benchell & Shapiro, Reference Weissberg-Benchell and Shapiro2017). In addition, education in what facilitates disclosure between parents and adolescents could be incorporated into parenting and family-based interventions (Wysocki et al., Reference Wysocki, Harris, Buckloh, Mertlich, Lochrie, Taylor, Sadler, Mauras and White2006), which are typically focused on problem solving and communication skills. Maintaining a high-quality accepting relationship across adolescence and young adulthood is important for facilitating the types of optimal disclosure processes that are beneficial for illness management. High-quality parent–child relationships may also facilitate disclosures to and in collaboration with health care providers, which is crucial as young adults transition to adult care where they are interacting quite independently from their parents (Berg et al., Reference Berg, Campbell, Kent de Grey, Butner, Murray and Wiebe2022)
Practicing skills with respect to disclosure could be informed by models such as the Health Disclosure Decision-Making Model (Greene et al., Reference Greene, Magsamen-Conrad, Venetis, Checton, Bagdasarov and Banerjee2012), especially as adolescents and young adults may lack self-efficacy with respect to disclosure. This is especially true when disclosure moves beyond parents, as such disclosures are clearly challenging and take resources to weigh their benefits and costs (Pathmalingam et al., Reference Pathmalingam, Moola and Woodgate2022). As adolescents and young adults disclose to individuals beyond their parents, individuals may benefit from engaging in incremental disclosure to “test the waters,” disclosing only partial information to see how others respond (Greene et al., Reference Greene, Magsamen-Conrad, Venetis, Checton, Bagdasarov and Banerjee2012). Such incremental disclosures are similar to the notion of partial disclosures in research on parent–adolescent relationships in typically developing adolescents (Guo et al., Reference Guo, Killoren and Campione-Barr2022). Multiple methods of disclosure, including disclosures through written form and computer-aided communication (e.g. email, social media) in addition to the more well-studied forms of face-to-face disclosure, may also be beneficial (Igler et al., Reference Igler, Austin, Sejkora and Davies2024; Lindell et al., Reference Lindell, Campione-Barr and Killoren2015).
In addition to interventions to encourage adolescents and young adults to disclose to others, programs are needed to provide better education to adolescents and young adults about chronic illness conditions to help in destigmatizing illness conditions. Given the large number of children and adolescents who live with a chronic illness, greater knowledge about the needs of so many individuals is necessary. Relatedly, education is needed for those experiencing chronic illness regarding their rights in the workplace through the Americans with Disabilities Act, should negative reactions occur to their disclosures (Kaushansky et al., Reference Kaushansky, Cox, Dodson, Mcneeley, Kumar and Iverson2017).
Future Directions
As the field of disclosure regarding chronic illnesses in adolescents and young adults is heavily qualitative in nature, with small samples involving a mix of chronic illnesses, there are numerous directions needed in future research. First, larger scale studies are needed to understand how different types of disclosure (open, partial, preventative) are associated with illness outcomes and more general psychological well-being. Such information will be key in understanding when disclosure is beneficial and when it is not.
For more routine disclosures regarding problems in illness management, there is a need to understand the link between disclosures and solicitation from parents and important others (especially romantic partners), as there is some indication that solicitation by others is linked to disclosures (Berg, Queen, et al., Reference Berg, Butner, Wiebe, Lansing, Osborn, King, Palmer and Butler2017). Ecological Momentary Assessment methods could be helpful to understand the time dynamics between disclosure and solicitation, especially as research focusing on typically developing youth indicates that adolescents frequently disclose only when asked (Guo et al., Reference Guo, Killoren and Campione-Barr2022). In addition, observational work between individuals with chronic illness and parents (as well as romantic partners) would be helpful in understanding the affective conditions under which disclosure occurs and is maintained over time (Disla et al., Reference Disla, Main, Yung, Loyola, Wiebe, Cameron, Cakan and Raymond2022; Main et al., Reference Main, Lougheed, Disla and Kashi2019).
Finally, research is needed concerning the diversity of experience of disclosure by illness conditions as well as by culture. Although the field has identified a number of factors by which illnesses differ (stigma, severity, and visibility), we do not fully understand how these factors affect adolescent and young adult disclosure frequency or depth, nor the strategies that are used. In the adult literature, perceived stigma for conditions such as HIV can affect disclosure strategies (Catona et al., Reference Catona, Greene and Magsamen-Conrad2015) and complex interactions with one’s relationship to the receiver of the disclosure (Derlega et al., Reference Derlega, Winstead, Greene, Serovich and Elwood2002). We know very little about how disclosure processes may operate differently by culture and racial communities. A promising area of research would be to understand cultural differences in disclosure processes among individuals with type 2 diabetes, where greater diversity occurs among individuals with the condition. The role of familism in Hispanic cultures could be important in understanding greater disclosures, especially with respect to emotional aspects of illness management (Campos & Kim, Reference Campos and Kim2017).
Conclusions
In summary, adolescents and young adults with chronic illnesses make judgments regarding whether to self-disclose that they have a chronic illness, how much to disclose, and to whom. Self-disclosure to nonfamily members such as friends and coworkers is very strategic, taking extensive time and resources and potentially is less frequent than would be optimal for the person with chronic illness. Individuals anticipate that they will receive negative reactions from others from disclosing their illness, but others’ reactions are generally more positive than anticipated. Routine disclosure regarding problems with illness management and symptoms are generally made to parents and to romantic partners, although there is little research beyond parent–child disclosure in the literature. Routine disclosure allows others to have knowledge about how illness management is going so that they can provide forms of support that fit the needs of the person with chronic illness. The literature suggests that interventions directed at easing the burden of self-disclosure for adolescents and young adults would be beneficial. Given that the costs of keeping things secret can be high both psychologically and physically, assisting adolescents and young adults to disclose may be beneficial in getting the support that they need to manage their illness.
