Development of a Lived Experience Panel to inform the design of embedded pragmatic trials of dementia care interventions.

BACKGROUND: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. METHODS: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia. The 11-member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. RESULTS: LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. CONCLUSIONS: The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.

Masculine Discrepancy Stress and Psychosocial Maladjustment: Implications for Behavioral and Mental Health of Adolescent Boys.

Gender role discrepancy (GRD), or nonconformity to socially prescribed gender roles, has been linked to a multitude of adverse mental and behavioral health outcomes. Masculine discrepancy stress (MDS), stress about being perceived not to conform to one's gender role, may explain the relationship between GRD and deleterious health outcomes. However, research on MDS has primarily been restricted to adult males. This leaves a critical gap pertaining to the potential effect of MDS on adolescent boys, who may be more malleable and susceptible to the influence and pressures of gender socialization. In the current study, data are drawn from a sample of adolescent male students (N = 592) who completed self-report questionnaires. We employed structural equation modeling to test the effects of GRD and MDS on psychosocial maladjustment measured via sexual behavior, substance use, violence, mood disorder symptoms, and hopelessness. In addition, we controlled for critical risk factors including sociodemographic characteristics, adverse childhood experiences, trauma symptoms, and neighborhood disorganization. Findings indicate significant potentiating effects of MDS on maladjustment while there were direct protective effects of GRD. These data suggest that developing prevention strategies that incorporate social norms pertaining to gender socialization may have an impact on multiple behavioral and mental health problems.

Feminine Discrepancy Stress and Psychosocial Maladjustment Among Adolescent Girls.

Discrepancy stress, stress about being perceived to not conform to one's gender role (i.e., gender role discrepancy), has demonstrated effects on risky sexual and violent behaviors. However, evidence of these effects has been limited to men and boys, neglecting the impact gender role discrepancy and discrepancy stress may have on girls. In addition, no study to date, has assessed the mental health correlates of gender role discrepancy and discrepancy stress. In the current study, we sought to elucidate the relationship between perceived feminine discrepancy and feminine discrepancy stress and psychosocial maladjustment while controlling for trauma symptoms stemming from the potential repercussions of feminine discrepancy. Maladjustment was measured by creating a second-order latent factor derived from four first-order latent constructs: sexual behavior, substance use, mood disorder symptoms, and hopelessness. Data are drawn from a cross-sectional sample of female students in middle and high school (N = 643) who completed self-report questionnaires. Using structural equation modeling, we found girls reporting feminine discrepancy (i.e., less feminine than the average girl) were more likely to report feminine discrepancy stress and trauma symptomatology. Controlling for feminine discrepancy and trauma symptoms, the relationship between discrepancy stress and maladjustment was positive and significant. Additionally, girls reporting feminine discrepancy scored higher on trauma symptomatology, and trauma demonstrated a strong direct effect on psychosocial maladjustment. These data suggest that developing trauma focused prevention strategies that incorporate social norms around gender socialization may have an impact on multiple behavioral and mental health problems.