Kristina I. Suorsa

Social support can be a protective factor against the negative mental health outcomes experienced by some parents and caregivers of children with differences of sex development (DSD). However, established social support networks can be difficult to access due to caregiver hesitancy to share information with others about their child's diagnosis. Health care providers in the field of DSD, and particularly behavioral health providers, are well positioned to help caregivers share information with the important people in their lives in order to access needed social support. This article summarizes the development of a clinical tool to help clinicians facilitate discussions regarding information sharing with caregivers of children with DSD. Members of the psychosocial workgroup for the DSD -Translational Research Network completed a survey about their experiences facilitating information sharing discussions with caregivers of children with DSD and other health populations. The results of this survey were used to develop a clinical tool using ongoing iterative feedback from workgroup members, based on principles of user-centered design and quality improvement. Workgroup members consider information sharing an important aspect of working with caregivers of children with DSD. Additional resources and tools were identified as potentially helpful to these discussions. The DSD Sharing Health Information Powerfully-Team Version (SHIP-T) is a resource tool for DSD health care team members to utilize in hospital and ambulatory settings to help caregivers of children with DSD share information with their social support networks. The final SHIP-T is included in this article. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Adolescents and young adults (AYAs) with chronic medical conditions are at increased risk for a host of negative psychosocial outcomes, including depressive and anxious symptoms. Although studies have shown that illness appraisals (e.g., illness intrusiveness [II] and illness uncertainty [IU]) demonstrate consistent associations with such outcomes, few studies have examined positive factors that may relate to better psychosocial outcomes and appraisals. The present study evaluated grit (i.e., perseverance and passion for long-term goals), a novel construct in pediatric psychology, as a positive factor that relates to reduced untoward effects of II and IU on psychosocial outcomes in AYAs with chronic medical conditions. College students with a chronic medical condition (N = 120) completed questionnaires online, including measures of grit, II, IU, depression, anxiety, and emotional well-being (EWB). The overall path analysis demonstrated that increased grit is directly associated with decreased depressive and anxious symptoms and increased EWB (p < .05). Further, analyses indicated that the positive association between grit and psychosocial outcomes is partially mediated by illness appraisals (p < .05). This study identified grit as a positive personal asset among AYAs with chronic medical conditions. By introducing a novel construct to the AYA literature, the study expands on the integration of positive psychology and pediatric psychology and underscores the need for greater research on the role of grit in chronic medical condition populations.

Objective: This preliminary study compared a DSM-IV-TR screening tool for posttraumatic stress symptoms (PTSS) with a modified DSM-5 version for parents of children diagnosed with cancer. Methods: Caregivers (n = 101) completed the Brief Symptom Inventory (BSI) and Impact of Event Scale-Revised (IES-R). Five BSI items were added to the IES-R to assess whether caregivers met DSM-5 specific posttraumatic stress disorder criteria. Results: Chi-square analysis revealed three groups: caregivers who (1) did not meet screening criteria for DSM-IV-TR or DSM-5; (2) only met DSM-IV-TR criteria; and (3) met criteria for DSM-IV-TR and DSM-5, X²(1, n = 101) = 64.47, p < 0.001. Subgroup 2 had lower overall PTSS than subgroup 3 (p < 0.001), but more than Subgroup 1 (p < 0.001). Conclusions: A “gap group” evidenced elevated PTSS but did not meet DSM-5 screening criteria. Further research is needed to clarify the prevalence and composition of PTSS among caregivers, and evaluate the clinical implications of the changes in diagnostic criteria.

Objective: To examine predictors of psychological functioning in college students with chronic illnesses. Participants: Participants (N = 1413) included 364 students with self-reported diagnoses of asthma or allergies, 148 students with other chronic illnesses (eg, epilepsy, type 1 diabetes), and 901 healthy students. Data were collected between November 2013 and May 2015. Methods: Participants completed online measures of psychosocial functioning, including illness uncertainty, illness intrusiveness, depression, and anxiety. Results: Students with chronic illnesses other than asthma or allergies evidenced the greatest levels of anxious (p <. 05), but not depressive symptomology. Additionally, this group reported greater illness uncertainty and intrusiveness (p <. 05) compared to their peers. Uncertainty and intrusiveness independently predicted depressive and anxious symptoms for students in both illness groups. Conclusions: Compared to peers with asthma or allergies, college students with other chronic illnesses reported higher levels of anxious symptoms. Illness uncertainty and intrusiveness appear to be predictors of psychological distress, regardless of illness.

The present study examined the impact of asthma-specific thought intrusion (TI) and thought suppression (TS) on two cognitive-affective variables (self-focused attention and fear of negative evaluation) among adolescents and young adults (AYAs) diagnosed with childhood-onset asthma. Participants were 290 AYAs who completed assessment questionnaires and participated in a written exercise electronically. Asthma-TI and TS were reported by participants following participation in a writing assignment. Asthma-TI was associated with increased private, public, and social anxiety self-focused attention, and greater fear of negative evaluation. Interestingly, asthma-TS was not associated with these same outcome variables. Findings suggest illness-specific cognitions are associated with cognitive-affective variables and it may be important to assess for illness-specific intrusive thoughts following asthma-focused medical appointments. Additionally, findings suggest the importance of assessing asthma-TI and TS separately in order to better understand thoughts about health and psychological functioning.

Psychosocial distress is a salient construct experienced by families of children with newly diagnosed cancer, but little is known about parental appraisal of the child's illness and the subsequent impact this may have on child and parent functioning. The goal of the present study was to examine the interrelationships among multiple parent illness appraisals, parent adjustment outcomes, and parent-reported child quality of life in parents of children diagnosed with cancer. Parents completed measures of illness appraisal (illness uncertainty and attitude toward illness), parent adjustment (general distress, posttraumatic stress, parenting stress), and child quality of life (general and cancer-related). Path analysis revealed direct effects for parent illness uncertainty and illness attitudes on all 3 measures of parent adjustment. Illness uncertainty, but not illness attitudes, demonstrated a direct effect on parent-reported child general quality of life; parenting stress had direct effects on general and cancer-related quality of life. Exploratory analyses indicated that parent illness uncertainty and illness attitudes conferred indirect effects on parent-reported general and cancer-related quality of life through parenting stress. Negative parent illness appraisals appear to have adverse impacts on parents' psychosocial functioning and have implications for the well-being of their child with cancer.

We examined the psychosocial characteristics of parents of children with disorders of sex development at early presentation to a disorders of sex development clinic. Parental anxiety, depression, quality of life, illness uncertainty and posttraumatic stress symptoms were assessed. Additionally we evaluated the relationship of assigned child gender to parental outcomes. A total of 51 parents of children with ambiguous or atypical genitalia were recruited from 7 centers specializing in treatment of disorders of sex development. At initial assessment no child had undergone genitoplasty. Parents completed the Cosmetic Appearance Rating Scale, Beck Anxiety Inventory, Beck Depression Inventory, SF-36, Parent Perception of Uncertainty Scale and Impact of Event Scale-Revised. A large percentage of parents (54.5%) were dissatisfied with the genital appearance of their child, and a small but significant percentage reported symptoms of anxiety, depression, diminished quality of life, uncertainty and posttraumatic stress. Few gender differences emerged. Although many parents function well, a subset experience significant psychological distress around the time of diagnosis of a disorder of sex development in their child. Early screening to assess the need for psychosocial interventions is warranted.

Objective To investigate the relationship of illness uncertainty (IU) to global psychological distress (GPD) and posttraumatic stress symptomatology (PTSS) using a path analysis approach. Methods Participants were 105 caregivers (M_Age = 36.9 years, standard deviation [SD] = 8.7) of children (M_Age = 8.6 years, SD = 5.0) with newly diagnosed cancer. A path analysis model examined the indirect and direct effects of each IU subscale on PTSS through GPD. Results The final model accounted for 47.30% of the variance in PTSS, and the ambiguity facet of IU had a significant indirect effect on PTSS through GPD. Lack of clarity and unpredictability were not significant predictors. Conclusions Ambiguity experienced by parents may be salient in the development of PTSS. Future research should examine these relationships longitudinally in larger samples to better understand adjustment in parents of children with cancer.