Parental Illness Research Articles

Pervasive biases in proxy genome-wide association studies based on parental history of Alzheimer's disease.

Almost every recent Alzheimer's disease (AD) genome-wide association study (GWAS) has performed meta-analysis to combine studies with clinical diagnosis of AD with studies that use proxy phenotypes based on parental disease history. Here, we report major limitations in current GWAS-by-proxy (GWAX) practices due to uncorrected survival bias and nonrandom participation in parental illness surveys, which cause substantial discrepancies between AD GWAS and GWAX results. We demonstrate that the current AD GWAX provide highly misleading genetic correlations between AD risk and higher education, which subsequently affects a variety of genetic epidemiological applications involving AD and cognition. Our study sheds light on potential issues in the design and analysis of middle-aged biobank cohorts and underscores the need for caution when interpreting genetic association results based on proxy-reported parental disease history.

Investigation of the Prevalence of Child Abuse and Its Influencing Factors by Parents

Background: The prevalence of child abuse is increasing globally, and this form of abuse can lead to severe and long-term problems in adulthood. In Iran, child abuse ranks as the most common form of domestic violence. Objectives: This study aimed to investigate the prevalence of abuse and its influencing factors among elementary school children. Methods: This descriptive-analytical study was conducted in 2023 in the city of Abadan. A total of 378 students from grades two to six in seven schools were selected using cluster and random sampling methods. The research instruments included a demographic questionnaire and a standard child abuse questionnaire. Data were analyzed using SPSS21 software, with both descriptive and analytical statistics applied. Results: The average age of the children was 10.43 years. The most common form of child abuse reported was parental neglect, with a prevalence of 75.53%. A significant relationship was found between physical abuse and factors such as the father's education (P = 0.001), parental illness (P = 0.001), parental addiction (P = 0.006), and parents' divorce (P = 0.03). Additionally, psychological abuse was significantly associated with the mother's education (P = 0.001), parental addiction (P = 0.02), loneliness at home (P = 0.002), and the child's grade (P = 0.001). Parental neglect showed a significant relationship with the child's grade (P = 0.014), birth order (P = 0.004), and place of living (P = 0.053). Conclusions: The most common form of abuse among students was parental neglect. A lack of parental awareness regarding appropriate child-rearing behaviors can contribute to child abuse. Therefore, it is recommended that schools and other relevant institutions increase efforts to educate parents on preventing various forms of abuse.

Language, Motor Ability and Related Deficits in Children at Familial Risk of Schizophrenia or Bipolar Disorder.

It is known that impairments in linguistic ability and motor function tend to co-occur in children, and that children from families with parental mental illness such as schizophrenia tend to perform poorly in both domains, but the exact nature of these links has not yet been fully elucidated. In this study, we leveraged the first wave of the Danish High Risk and Resilience Study (VIA 7), which includes both genetic data and measures covering multiple developmental domains. The VIA 7 cohort comprises 522 7-year-old children born to parents with schizophrenia (N = 202), bipolar disorder (N = 120) or neither (N = 200). We investigated the relationships between linguistic ability and motor function using correlation and regression analyses, focusing on developmental coordination disorder (DCD) and specific language impairment (SLI) and their potential associations with the three risk groups. We found significant correlations between most measures of language and motor function and significant associations of DCD and SLI with language and movement measures, respectively, the largest effect being that of DCD on receptive language, with a significant interaction effect: DCD was associated with poorer performance in children from schizophrenia families compared to bipolar disorder and control families. Both disorders showed higher prevalence among children with familial high risk of mental illness. We did not find significant evidence of genetic overlap between DCD and SLI. Our results suggest strong links between the domains of motor function and linguistic ability. Children of parents with schizophrenia are at high risk of comorbid language and movement disorders.

Parental Illness Shocks and Child Health in Bangladesh

Parental Illness Shocks and Child Health in Bangladesh

Exploring past research to move forward: a scoping review of aims, outcomes, and recommendations in parental mental illness qualitative research.

As parental mental illness is a global public health concern, rigorous qualitative research is central to understanding families' experiences, needs and outcomes to inform optimal service provision in adult mental health and children's social services. The current review identified, appraised and synthesized international qualitative research exploring Families and Parent Mental Illness (FaPMI) research to determine the focus, findings and outcomes and to summarize the recommendations made about the direction of future research. Findings are classified according to outcomes for children, parents, and families. While some children experienced positive outcomes from a parent's illness, most faced impacts on their social-emotional wellbeing, school performance, increased caregiving responsibilities, strained parent relationships, and lack of understanding about parental mental illness. Some family members endured abuse and struggled to adapt to an ill parent's unpredictable needs, with reluctance to discuss the situation. Parents found parenting challenging yet viewed having children as a protective factor. Future research should gather diverse perspectives, explore within-family factors and social environments, develop and test interventions, and address methodological issues like sampling. This review highlights the centrality of qualitative data in comprehensively understanding and evaluating outcomes of parental mental illness on families and provides clear recommendations regarding future research.

More Than Just Treats? Effects of Grandparental Support for Children Growing up in Adversity.

This study examined whether grandparental support is a protective factor for children's socio-emotional development in the context of adversity. Using longitudinal data from the Millennium Cohort Study, we investigated the effects of grandparental support across development in children with and without adverse childhood experiences (ACEs). Socio-emotional development was assessed with the Strengths and Difficulties Questionnaire when children were aged 3 years (N=10,186), 5 years (N=10,412) and 7 years (N=10,551). Parent-reported grandparental childcare, coresidence and financial help were assessed and parents reported on the occurrence of five ACEs: physical and emotional abuse assessed with the Straus' Conflict Tactics Scale, parental mental illness assessed with the Kessler scale, domestic violence and parental separation. We found that children with relatively higher levels of ACEs showed more prosocial behaviour and less externalizing problems when they received grandparental care compared to non-grandparental (in)formal care, but only at age 3. By age 7, children with higher levels of ACEs receiving grandparental care showed less prosocial behaviour and more externalizing problems. In addition, grandparental financial support at age 3 was related to more externalizing problems. Post-hoc analyses showed that internalizing and externalizing behaviours at age 5 were related to an increased probability of grandparental childcare at age 7, indicating that children's socio-emotional problems trigger grandparental support. Our findings point to a protective effect of grandparental care on children's socio-emotional development at age 3. Our results highlight the importance of going beyond the nuclear family towards the impact of the wider family network when examining children's socio-emotional development. RESEARCH HIGHLIGHTS: Three-year-old children with high levels of adverse childhood experiences (ACEs) show more prosocial behaviour and less externalizing behaviour when they receive grandparental care. Grandparental care has therefore protective effects on young children's socio-emotional development in the context of family adversity. Grandparents respond to children's socio-emotional problems and family adversity by increasing financial support and involvement in care. These findings underscore the importance of going beyond the nuclear family towards the impact of the wider family network when examining children's socio-emotional development.

A phenomenological investigation of kinship involvement in the lives of children whose parents have mental illness

ABSTRACT Background and Purpose Mental health services rarely reach children whose parents have mental illness despite their poor outcomes. There is a need to consider how mental health practitioners can prioritize the needs of these children and their families. This study examined kinship involvement in the lives of children whose parents have mental illness. Methods A phenomenological design was used, interviewing 20 children (aged 10–17 years) in families with parental mental illness (PMI) in Ghana. The interview data was analysed to attain the essential features of what kinship support looks like for children and their families. Results The essential feature of kinship support for children and families with PMI is characterized by uncertainty. However, there is an overall impression that kinship is generally supportive to these families, providing respite services, assistance with daily living, emotional support and advice to children and families. Yet, there is a sense that kinship may not always be helpful to these families. Conclusions Kinship support is integral in countries where formal mental health services are inadequate and should be explored/harnessed by mental health practitioners. The study provides directions into ways practitioners can utilize kinship as a resource when working with these families.

A two-institution pilot study on the psychological burden and distress of parents caring for children with shunted hydrocephalus.

Little is known about the emotional health of parents caring for children with shunted hydrocephalus. The aim of this pilot study was to find out whether parents caring for shunt-treated hydrocephalic children experience serious psychological problems and psychosocial distress and whether these problems are related to the sociodemographic background of the caregivers, the clinical characteristics of their children, and parents' illness-related concerns and perceived burden of their children's illness. This pilot study was performed in an outpatient setting at two German hospitals. The following questionnaires were handed out to parents of children with shunted hydrocephalus (< 21 years of age): the Patient Health Questionnaire (PHQ-9) for depression, the Generalized Anxiety Disorder Scale (GAD-7) for anxiety, the Distress Thermometer (DT) for psychosocial distress, the Hydrocephalus Concerns Questionnaire (HCQ) for assessment of parents' illness-related concerns, and the Hydrocephalus Outcome Questionnaire (HOQ) for assessment of perceived children's disease burden. Clinical data of the respective children were collected from electronic charts. Parents' demographic data were evaluated via questionnaires. Parents' psychological variables were correlated with demographic and clinical data and HCQ and HOQ scores. Regression analyses of HCQ and HOQ scores with psychological items were performed. Sixty-three parents were included in this study. Of these, 60% reported clinically relevant levels of either depression (11%), anxiety (10%), and/or psychosocial distress (57%). There were no associations between parental sociodemographic or children's clinical characteristics with parents' psychosocial well-being or psychosocial distress. Depression, anxiety, and DT scores were highly intercorrelated and significantly correlated with HCQ scores (r = 0.508, r = 0.516, r = 0.442; p < 0.01). Thereby, worries about shunt-related complications were the most reported concern in the HCQ. Depression and anxiety correlated with the scores of some HOQ subcategories. In preliminary regression analyses, higher illness-related concerns predicted occurrence of parents' anxiety. The authors' results support the notion that there is a need for psychosocial support for a proportion of parents who care for shunted hydrocephalic children. Perceived child symptom burden and parental illness concerns were identified as relevant correlates of parental psychological well-being. Thus, concerns specific to shunt-related problems could be a first starting point for the development of individual support measures.

Parental multiple sclerosis, changes in family routine and mental health of young children

Introduction: Parental illness generates changes in family dynamics and in the mental health of all family members. Children of parents with chronic illnesses, such as multiple sclerosis face unique challenges, as they are forced to adapt to a new reality where parental illness limits the care and attention capabilities towards them. Methods: a systematic literature review was conducted using the PsycInfo, Scopus and Medline databases, with the equation "multiple sclerosis"; AND "family"; AND "parents"; AND "child parent relations", conducted in September 2022. Results: n = 26 studies were included. Children of people with multiple sclerosis (MS) present more adjustment problems, anxiety disorders and behavioral disturbances than controls. This distress is associated with factors such as parental physical and psychological comorbidity and changes within family roles. The level of risk varies in relation to factors such as support network, sex of the ill parent, time of exposure to the disease and the role of the healthy parent. Lack of access to information and support turns out to be a common complaint of young children. Conclusions: Most of the children living with parental illness present experiences alterations in their mental health and show a higher prevalence of psychological distress; however, this does not occur in all cases. The most predominant protective factors seem to be: parental adherence to treatment, and, above all, access to effective information in accordance with the level of understanding of the different populations involved.

Mitigating rACEsm in K-12 Classrooms: The Consideration of Culturally-Informed Adverse Childhood Experiences and Utilization of Culturally Relevant Education and Systemically Trauma-Informed Practice

Forty-six percent of children in the United States experience a potentially traumatic event (PTE), also known as an Adverse Childhood Experience (or ACE), including abuse (physical, sexual, emotional), neglect, and/or household dysfunction (incarceration of a family member, parental mental illness, divorce, etc.) before their 18th birthday. In the United States, 61% of African-American youth experience at least one ACE (more than any other racial or ethnic group), compared with 40% of White children. A culturally informed conceptualization of the ACEs framework (C-ACEs) that considers the effects of historical trauma, racist social conditions, and race-based biological stress on African-American youth is essential. This is particularly important in K-12 Educational institutions for two reasons: (1) Schools are a major environment in which African-American youth are exposed to racial trauma via teachers, peers, policies, and practices within the school itself; (2) Popularity of the “trauma-informed” movement in schools that overemphasizes and overuses the existing ACEs framework (i.e., a “neoliberal biomedical trauma model”) and does not consider larger systems that cause and perpetuate trauma (p. 105). Further, it is essential to review how school teachers, administrators, and staff can amalgamate Systemically Trauma-Informed Practice (SysTIP) with Culturally Relevant Education (CRE) to increase education equity, reduce the trauma of racism experienced within educational spaces, and help ensure that African-American students succeed academically and personally.

Sexual identity is associated with adverse childhood experiences (ACEs) in US early adolescents

ObjectiveTo determine disparities in adverse childhood experiences (ACEs) by sexual identity in a national cohort of early adolescents. MethodsWe analyzed cross-sectional data from year 2 of the Adolescent Brain Cognitive Development Study (N=10,934, 2018-2020, ages 10-14 years). Disparities in ACE score across lesbian, gay, or bisexual (LGB), not sure, and heterosexual adolescents were assessed using multinomial logistic regression analyses. Logistic regressions estimated the associations between sexual identity and each individual ACE. Analyses were adjusted for potential confounders. ResultsIn adjusted models, LGB adolescents had higher risk of experiencing 2, 3, or ≥4 ACEs (Relative Risk Ratios [RRR] =1.57, 95% CI 1.01-2.42), 3 (RR=1.78, 95% CI 1.100-2.88), or ≥4 ACEs (RRR=3.20, 95% CI 1.92-5.32), and not sure adolescents had a higher risk of having ≥4 ACEs (RRR=2.17, 95% CI 1.22-3.87), compared to heterosexual adolescents. LGB and not sure adolescents had higher risks of reporting emotional abuse (“yes” OR =4.21, 95% CI 1.84-9.61; “maybe” OR=6.20, 95% CI 2.91-13.19) and parent mental illness (“yes” OR=1.95, 95% CI 1.48-2.57; “maybe” OR=1.63, 95% CI 1.21-2.18) compared to heterosexual adolescents. ConclusionsLGB adolescents and those questioning their sexual identity were at greater risk of having higher ACE scores, with LGB adolescents experiencing the highest risk of experiencing ACEs. LGB adolescents also had higher odds of reporting emotional and parent mental illness. Recognizing this heightened risk of ACEs in early adolescence is critical for designing clinic and school-based interventions.

Adverse childhood experiences, health risk factors, and significant problems with substances and behaviors among U.S. college students.

Adverse childhood experiences (ACEs) are often associated with higher rates of mental health issues and problematic behaviors within the U.S. college population. Therefore, the primary purpose of this study was to investigate the current associations among ACEs, six psychosocial risk factors for poor health (i.e., anxiety, depression, loneliness, negative urgency, positive urgency, and stress), and significant behavioral and substance problems in a large sample of college students (N = 1,993). Overall, 72.3% of participants reported one or more ACEs, with 21.7% reporting at least five of these experiences; the most prevalent ACE types were emotional abuse (51.7%) and parental mental illness (33.8%). Cumulative ACEs were positively associated with all health risk factors, rs =.07-.38, ps ≤.001, and these ACE scores were most connected to student problems with alcohol, overeating, and sex, rs =.19-.22, ps <.001. Furthermore, using logistic regression, cumulative ACEs predicted which students were more likely to report behavioral problems, OR = 1.08, 95% CI [1.03, 1.14]; substance problems, OR = 1.16, 95% CI [1.07, 1.26]; and both types of problems, OR = 1.28, 95% CI [1.20, 1.36], relative to students without these problems. Aside from ACEs, higher anxiety was the only other risk factor all three problem types shared. Collectively, these findings highlight the differential impact of ACEs and other psychosocial risk factors on the susceptibility of college students to particular forms of maladaptive coping and suggest potential targets for intervention and prevention efforts in these areas.

Profiles of parental coping with paediatric cancer and their associations with parental illness adaptation.

To identify profiles of coping in parents of children with cancer and their underlying factors and to examine which profile(s) are associated with illness adaptation. A cross-sectional study utilizing surveys among parents of children with cancer (n = 89). Questionnaires included socio-demographics, ways of coping, parenting stress, depression, post-traumatic symptoms, illness adjustment and quality of life. Parental coping profiles were identified via latent profile analysis. Logistic multinomial regression was used to identify predictors of coping profiles. Adaptation outcomes were compared across the coping profiles via multivariable analyses of variance with Bonferroni adjustments. Five profiles were identified: The 'Strong Repertoire' used coping strategies moderate to high degree, with a positive-active orientation; The 'Moderate-Activist' used a similar pattern, rather more moderately; The 'Self-Regulator' used self-content strategies; The 'Mild-Engager' used active-engaging strategies; The 'Avoidant Coper' used avoidant-passive strategies. Parental stress predicted coping profiles, so that parents experiencing greater stress utilized the 'Avoidant Coper' to a greater degree. Group comparisons revealed that 'Avoidant-Copers' had more depressive and post-traumatic symptoms, worse illness adjustment and lower quality of life. Passive-avoidant mechanisms of coping may be maladaptive in terms of parental cancer adaptation and indicative of lower resilience. Findings can direct clinicians to promote familial resilience by adapting policy and practice to meet familial needs. Not applicable.

Unveiling the Psychological Consequences of Illness Perception in Pediatric Multiple Sclerosis: A Parent-Child Study.

Previous research has emphasized the significant role of illness perception in chronic diseases, including Multiple Sclerosis. Limited research has been conducted on exploring illness perception in Pediatric Onset Multiple Sclerosis (POMS), parental illness perception, and the impact of differences in their illness perceptions on the emotional well-being of the child. This study included 65 dyads of children aged 10-17 and their parents, divided into the following two groups: (I) 32 dyads of children with POMS and their parents; and (II) 33 dyads of healthy children and their parents. Overall, 73.1% and 43.8% of the children with POMS met the criteria for probable anxiety and depression, respectively, compared to 27.3% and 0% of the healthy children. Differences were found between the dimensions of illness perception in the POMS children and their parents, in the areas of consequences, personal control, identity, and control factors. Multinomial Logistic Regression indicated that differences in child-parent illness perception increased the likelihood of comorbid anxiety and depression by 37%. These findings underscore the importance of alignment between children with POMS and their parents in illness perception. Healthcare providers should prioritize interventions that address illness perceptions and be mindful of the potential impact on depression and anxiety comorbidity.

Early-life risk factors for depression among young adults in the United States general population: Attributable risks and gender differences

BackgroundThis study adopts individual and societal-level approaches to examine the contribution of childhood risk factors to major depressive episodes (MDE) in 2526 American young adults. MethodsNationally representative data from the 2017 U.S. Panel Study of Income Dynamics – Transition into Adulthood Supplement (PSID-TAS) were analyzed using multivariate methods to assess the impact of parental mental illness, childhood adversities, childhood mental disorders, and childhood physical conditions. Adjusted odds ratios and population attributable risk proportions (PARPs) are calculated to estimate the proportion of MDE cases related to risk factors. ResultsThe 12-month prevalence of positive screens for MDE was 25.4 %. Approximately 34 % of these were attributable to childhood mental disorders, 24 % to childhood physical conditions, 21 % to childhood adversities, and 16 % to parental mental illness. Childhood and parental depression were critical risk factors, both at the individual (odds ratio exceeding 2) and societal (PARP approximately 24 %) levels. Gender-specific risk factors were identified, with childhood physical abuse and childhood anxiety disorders constituting risk factors for females, and childhood externalizing disorders and childhood headaches as risk factors for males. Approximately 60 % of U.S. young adult MDE cases are attributable to risk factors before age 18. LimitationsPossible over reporting of MDE may have biased the associations between predictors and depression. ConclusionsExposure to depression at a young age—one's own or parental depression—is a robust risk factor for both genders. Policies and interventions focused at alleviating the societal burden of depression should value its generational transmission.

Parental illness work across the attention deficit hyperactivity disorder diagnostic journey.

The process of referral, assessment, and diagnosis of attention deficit hyperactivity disorder (ADHD) within the UK is often protracted. Given that parents are frequently the instigators of the diagnostic process, understanding the experience of parents is important. Drawing on findings from a longitudinal study, this article explores how the parental experience of the ADHD diagnostic journey includes three significant and distinct forms of 'illness work'. Twenty-one semi-structured serial interviews were conducted over a 2-year period with seven parents of children on the ADHD diagnostic journey in North East England. We present three significant forms of parental illness work: (1) The 'diagnostic quest', parental work recognising and fighting for their children's needs and selfhood, seeking diagnosis and engaging with systems, (2) 'self-biographical illness work', the personal parental biographical response to the diagnostic journey and (3) 'child biographical illness work and recontextualizing the child', parental biographical adjustment and recontextualisation of their children. We advance Rasmussen etal.'s (2021) model by demonstrating its usefulness in understanding how parents with a personal ADHD diagnosis experience biographical disruption or cohesion in response to their children's diagnosis. That a child's diagnosis leads parents with ADHD to experience a self-biographical cohesive or disruptive response is a unique and significant finding.

Summarising Quantitative Outcomes in Parental Mental Illness Research.

A quarter of all children grow up in a family where a parent experiences a mental illness (FaPMI). Research activity in this area is growing rapidly and it is now critical to better understand the extant knowledge in the field. This scoping review of quantitative FaPMI literature parallels a qualitative literature review and a series of Delphi studies with key stakeholders (e.g. lived experience and clinicians), that is part of a larger program of research to achieve consensus regarding the direction of FaPMI research; including making recommendations about outcomes and measures. The programme of research aims to promote and facilitate greater comparison and learning across studies and settings. Initially this scoping review summarises the quality and focus (e.g. country and sampling) of 50 quantitative studies from 2000 to 2023 and then classifies studies according to outcomes for parents, children and families. Six to eleven years were the most common child sample group and girls were slightly underrepresented (49/51) and parents were 88% mothers. Analogous parent and child outcomes were; mental illness/psychopathology, wellbeing, mental health literacy, trauma and stressful experiences, coping, help seeking/service need, within family relationships and supports, outside family relationships and supports. Additional outcomes for parents were; parenting skills, parent competence and parenting stress and for children in relation to their; cognitive functioning and caregiving. The family related outcomes were the within and outside family relationships and supports. Since 2000 there have been 136 different survey instruments employed with approximately 80% used in only one study. This suggests that the broader goals of the program of research are warranted as there is a need for less heterogeneity in measures used. Suggested areas for future research include a sampling focus on fathers, economic evaluations of programs, parent mental health literacy, trauma, genetics and integrating well-being concepts into research designs. Child research should focus on mental health literacy, the level and impact of caring responsibilities, assessing past trauma and the roles of close family and external supports.

Prevalence of parenthood among hospitalized adult patients with severe mental illness: a quantitative data analysis.

In the Western world, more than one-third of the patients of productive age hospitalized for severe mental illness (SMI) are parents. Each of their offspring is exposed to several stressors related to their parent's illness and hospitalization, which puts them at an increased risk of developing mental health problems. In the Czech Republic, no statistics are currently available about the families of patients with SMI, inpatients who are parents, or data about their children (ages ≤18 years). Therefore, our research aim was to describe the prevalence of parenthood among hospitalized patients with SMI, assess the number of children and determine the extent to which offspring information was present in medical records. Quantitative data from medical records (2,768 patients, aged 18-63 years, hospitalized for SMI between 2017 and 2020) from two large inpatient psychiatric facilities were examined. Parental information, demographic characteristics, number of children, and other available data were collected. The prevalence of parenthood among inpatients with SMI was 34.6%. Parenthood was most prevalent among female patients and patients with recurrent depressive and bipolar disorders. The total number of offspring in 957 patient-parents was 1781 (41.7% minors under the age of 18). Information on parenthood was available in 99.7% of cases; information on the age of offspring, custody, and sociodemographic situation varies, being included in 73% to 89.7% of the medical records (some details were more frequently recorded than others). The data obtained may help to better understand and address the specifics of these families and thus serve as a basis for the development of prevention programs.

Parental Neglect and Childhood Obesity Amidst COVID-19: A Developmental Psychopathology Perspective on Health and Developmental Risks.

The COVID-19 pandemic has profoundly impacted the mental health and developmental trajectories of children and adolescents, catalyzing a range of psychological and behavioral issues due to enforced lockdowns and other restrictions. This text explores these impacts through the lens of developmental psychopathology, which integrates clinical psychology and developmental science to examine the emergence and evolution of psychological disorders across a lifespan. This paper highlights how pandemic-related disruptions have exacerbated conditions such as anxiety and depression and, notably, increased childhood obesity due to changes in lifestyle and reductions in physical activity. The analysis includes a discussion of how isolation has not only restricted access to educational and psychological resources but also increased the risk of parental mental illness and related familial stress, thereby intensifying issues of neglect and their consequent impact on child health. By employing a developmental psychopathology framework, this paper argues for the necessity of targeted interventions that address these complex interplays of genetic, environmental, and psychological factors. Such interventions aim to support children through structured educational and health-oriented strategies, ensuring their well-being amidst the ongoing challenges posed by the pandemic. This approach underscores the importance of early, multifaceted strategies involving parents, educators, and healthcare providers to foster healthier developmental outcomes for children facing unprecedented global health crises.

Trajectories of illness uncertainty among parents of children with atypical genital appearance due to differences of sex development.

The present study aimed to identify distinct trajectories of parental illness uncertainty among parents of children born with atypical genital appearance due to a difference of sex development over the first year following diagnosis. It was hypothesized that four trajectory classes would emerge, including "low stable," "high stable," "decreasing," and "increasing" classes, and that select demographic, familial, and medical factors would predict these classes. Participants included 56 mothers and 43 fathers of 57 children born with moderate to severe genital atypia. Participants were recruited from eleven specialty clinics across the U.S. Growth mixture modeling (GMM) approaches, controlling for parent dyad clustering, were conducted to examine classes of parental illness uncertainty ratings over time. A three-class GMM was identified as the best-fitting model. The three classes were interpreted as "moderate stable" (56.8%), "low stable" (33.0%), and "declining" (10.3%). Findings suggest possible diagnostic differences across trajectories. Findings highlight the nature of parents' perceptions of ambiguity and uncertainty about their child's diagnosis and treatment the year following their child's birth/diagnosis. Future research is needed to better understand how these trajectories might shift over the course of the child's development. Results support the development of tailored, evidence-based interventions to address coping with uncertainty among families raising a child with chronic health needs.