Patient and Provider Satisfaction with Asynchronous Versus Synchronous Telepsychiatry in Primary Care: A Secondary Mixed-Methods Analysis of a Randomized Controlled Trial.

Background: Asynchronous telepsychiatry (ATP) consultations are a novel form of psychiatric consultation. Studies comparing patient and provider satisfaction for ATP with that for synchronous telepsychiatry (STP) do not exist. Methods: This mixed-methods study is a secondary analysis of patients' and primary care providers' (PCPs) satisfaction from a randomized clinical trial of ATP compared with STP. Patients and their PCPs completed satisfaction surveys, and provided unstructured feedback about their experiences with either ATP or STP. Differences in patient satisfaction were assessed using mixed-effects logistic regression models, and the qualitative data were analyzed using thematic analysis with an inductive coding framework. Results: Patient satisfaction overall was high with 84% and 97% of respondents at 6 months reported being somewhat or completely satisfied with ATP and STP, respectively. Patients in the STP group were more likely to report being completely satisfied, to recommend the program to a friend, and to report being comfortable with their care compared with ATP (all p < 0.05). However, there was no difference between the patients in ATP and STP in perceived change in clinical outcomes (p = 0.51). The PCP quantitative data were small, and thus only summarized descriptively. Conclusions: Patients expressed their overall satisfaction with both STP and ATP. Patients in ATP reported more concerns about the process, likely because feedback after ATP was slower than that after STP consultations. PCPs had no apparent preference for STP or ATP, and reported implementing the psychiatrists' recommendations for both groups when such recommendations were made, which supports our previous findings. Trial Registration: ClinicalTrials.gov NCT02084979; https://clinicaltrials.gov/ct2/show/NCT02084979.

Bringing Needed Change to Medical Student Well-Being: A Call to Expand Accreditation Requirements.

Issue: Noting high rates of burnout, depression, and suicidality among medical students, academic medical communities are trying to identify preventive and curricular measures that protect and promote student well-being. To date, the effectiveness of these efforts is unclear. In addition, evidence increasingly suggests that the major drivers of distress appear to be factors within the social, learning, and work environments. Specific to medical schools in the United States, neither the Liaison Committee on Medical Education nor the Commission on Osteopathic College Accreditation include accreditation standards regarding well-being curricula and, as such, these curricula are not well-integrated into students' medical school experience. Current accreditation standards also do not specifically require institutions to assess or address systemic factors of the learning environment that negatively affect student well-being. Evidence: This paper proposes expanding current Liaison Committee on Medical Education and Commission on Osteopathic College Accreditation standards on professionalism to incorporate well-being as a core component of professional identity formation by requiring individual and institutional-level actions. Proposed changes to accreditation standards include (1) institutional assessment of the impact of the learning environment on student well-being; (2) continuous quality improvement efforts to address structural factors associated with student well-being and modification of practices that impair student well-being; and (3) integrated curriculum with related assessment to educate students on empirically-supported strategies for well-being. Implications: Refining undergraduate medical education accreditation standards in the United States to include language specific to student well-being will facilitate long overdue changes to the learning environment. In the end, the goal is not just to improve medical student well-being, but to provide a workforce better equipped for a sustainable and meaningful career.

Clinical Outcomes of Asynchronous Versus Synchronous Telepsychiatry in Primary Care: Randomized Controlled Trial.

BACKGROUND: Asynchronous telepsychiatry (ATP; delayed-time) consultations are a novel form of psychiatric consultation in primary care settings. Longitudinal studies comparing clinical outcomes for ATP with synchronous telepsychiatry (STP) are lacking. OBJECTIVE: This study aims to determine the effectiveness of ATP in improving clinical outcomes in English- and Spanish-speaking primary care patients compared with STP, the telepsychiatry usual care method. METHODS: Overall, 36 primary care physicians from 3 primary care clinics referred a heterogeneous sample of 401 treatment-seeking adult patients with nonurgent psychiatric disorders. A total of 184 (94 ATP and 90 STP) English- and Spanish-speaking participants (36/184, 19.6% Hispanic) were enrolled and randomized, and 160 (80 ATP and 80 STP) of them completed baseline evaluations. Patients were treated by their primary care physicians using a collaborative care model in consultation with the University of California Davis Health telepsychiatrists, who consulted with patients every 6 months for up to 2 years using ATP or STP. Primary outcomes (the clinician-rated Clinical Global Impressions [CGI] scale and the Global Assessment of Functioning [GAF]) and secondary outcomes (patients' self-reported physical and mental health and depression) outcomes were assessed every 6 months. RESULTS: For clinician-rated primary outcomes, ATP did not promote greater improvement than STP at 6-month follow-up (ATP vs STP, adjusted difference in follow-up at 6 months vs baseline differences for CGI: 0.2, 95% CI -0.2 to 0.6; P=.28; and GAF: -0.6, 95% CI -3.1 to 1.9; P=.66) or 12-month follow-up (ATP vs STP, adjusted difference in follow-up at 12 months vs baseline differences for CGI: 0.4, 95% CI -0.04 to 0.8; P=.07; and GAF: -0.5, 95% CI -3.3 to 2.2; P=.70), but patients in both arms had statistically and clinically significant improvements in both outcomes. There were no significant differences in improvement from baseline between ATP and STP on any patient self-reported ratings at any follow-up (all P values were between .17 and .96). Dropout rates were higher than predicted but similar between the 2 arms. Of those with baseline visits, 46.8% (75/160) did not have a follow-up at 1 year, and 72.7% (107/147) did not have a follow-up at 2 years. No serious adverse events were associated with the intervention. CONCLUSIONS: This is the first longitudinal study to demonstrate that ATP can improve clinical outcomes in English- and Spanish-speaking primary care patients. Although we did not find evidence that ATP is superior to STP in improving clinical outcomes, it is potentially a key part of stepped mental health interventions available in primary care. ATP presents a possible solution to the workforce shortage of psychiatrists and a strategy for improving existing systems of care. TRIAL REGISTRATION: ClinicalTrials.gov NCT02084979; https://clinicaltrials.gov/ct2/show/NCT02084979.

The Suicide Prevention, Depression Awareness, and Clinical Engagement Program for Faculty and Residents at the University of California, Davis Health.

OBJECTIVE: The objective of the study is to present results of a depression and suicide screening and treatment referral program for physicians at an academic medical center. METHODS: An anonymous web-based screening questionnaire was sent to all physicians at a large academic center. Responses were classified as indicating either high, moderate, or low risk for depression and suicide. Physicians at high and moderate risk were contacted by a counselor through a messaging system. The counselor's message contained information on risk level and an invitation to meet in person. High-risk respondents who did not reply to the message or declined to meet received mental health resources. Respondents who met with the counselor were offered individualized treatment referrals and to participate in a 1-year follow-up of self-reports every 3 months. RESULTS: The questionnaire was sent to approximately 1800 residents, fellows, and faculty from February 2013 through March 2019. A total of 639 questionnaires were received, 100 were excluded for various reasons, and 539 were used to conduct analyses (14.4% response rate). The majority of respondents were classified at moderate (333 [62%]) or high (193 [36%]) risk for depression or suicide. Eighty-three respondents were referred for mental health care, and 14 provided data for the follow-up study. CONCLUSIONS: Results of screening physicians for depression and suicide at one academic medical center highlight the challenges of engaging most of them in this activity and the satisfaction of the minority who successfully engaged in a treatment referral program.

Adverse Childhood Experiences in Medical Students: Implications for Wellness.

OBJECTIVE: The primary purpose of the study was to assess the prevalence of adverse childhood experiences (ACEs) in a cohort of third-year medical students and characterize their childhood protective factors. METHODS: The authors developed a web-based anonymous survey distributed to all third-year medical students in one school (N = 98). The survey included the 10-item ACE Study questionnaire, a list of childhood protective factors (CPF) and questions to assess students' perception of the impact of ACEs on their physical and mental health. The medical school's IRB approved the student survey as an exempt study. The authors computed descriptive and comparative statistical analyses. RESULTS: Eighty-six of 98 students responded (88% response rate). Forty-four students (51%) reported at least one ACE exposure and 10 (12%) reported ≥ 4 exposures. The latter were all female. The average difference in the ACE score between male and female medical students was - 1.1 (independent t test with unequal variances t(57.7) = - 2.82, P = .007). Students with an ACE score of ≥ 4 were significantly more likely to report a moderate or significant effect on their mental health, compared with students with scores ≤ 3 (chi-square test, P = < .0001). Most students reported high levels of CPF (median score = 13 of a maximum score = 14). ACEs and CPF were inversely associated (Pearson correlation = - 0.32, P = .003). CONCLUSIONS: A sizeable minority of medical students reported exposure to multiple ACEs. If replicated, findings suggest a significant vulnerability of these medical students to health risk behaviors and physical and mental health problems during training and future medical practice.

Family-centered depression treatment for older men in primary care: a qualitative study of stakeholder perspectives.

BACKGROUND: Family members often play important roles in the lives of depressed older men and frequently attend primary care visits with their loved ones, yet surprisingly little is known about how to most effectively engage and include family members in depression treatment. However, including family in depression treatment may be difficult due to several factors, such as depression stigma and family conflicts. The objective of this study was to describe challenges in engaging family members in older men's depression treatment and potential strategies to overcome those challenges. METHODS: A cross-sectional, qualitative descriptive interview study was conducted in a safety-net, Federally Qualified Health Center in California's Central Valley. A total of 37 stakeholders were recruited, including 15 depressed older (i.e. age ≥ 60) men, 12 family members, and 10 clinic staff. Depressed men were identified through mail outreach, waiting room screening, and referral. Depressed men identified family members who were later approached to participate. We also recruited a purposeful sample of clinic staff. Interviews explored stakeholder perspectives on family involvement in men's depression treatment as part of a primary care intervention. Interviews were conducted using a semi-structured interview guide, tape-recorded, transcribed verbatim, and translated if the interview was conducted in Spanish. RESULTS: Four themes were identified representing core challenges: engaging men at the right time; preserving men's sense of autonomy; managing privacy concerns; and navigating family tensions. Stakeholders also provided practical suggestions and advice about how each of these challenges might be addressed. CONCLUSIONS: While engaging family is a promising approach to strengthen depression care for older men in primary care settings, several potential challenges exist. Family- centered depression intervention development and clinical practice need to anticipate these challenges and to develop approaches and guidelines to address them.

The Suicide Prevention, Depression Awareness, and Clinical Engagement Program for Faculty and Residents at the University of California, Davis Health System.

OBJECTIVE: The authors replicated a program developed by UC San Diego, identified medical staff at risk for depression and suicide using a confidential online survey, and studied aspects of that program for 1 year. METHODS: The authors used a 35-item, online assessment of stress and depression depression developed and licensed by the American Foundation for Suicide Prevention that aims to identify and suicide risk and facilitate access to mental health services. RESULTS: During 2013/2014, all 1864 UC Davis residents/fellows and faculty physicians received an invitation to take the survey and 158 responded (8% response rate). Most respondents were classified at either moderate (86 [59%]) or high risk for depression or suicide (54 [37%]). Seventeen individuals (11%) were referred for further evaluation or mental health treatment. Ten respondents consented to participate in the follow-up portion of the program. Five of the six who completed follow-up surveys reported symptom improvement and indicated the program should continue. CONCLUSIONS: This program has led to continued funding and a plan to repeat the Wellness Survey annually. Medical staff will be regularly reminded of its existence through educational interventions, as the institutional and professional culture gradually changes to promptly recognize and seek help for physicians' psychological distress.

Do psychiatry residents identify as psychotherapists? A multisite survey.

BACKGROUND: Psychiatric training was once synonymous with learning psychotherapy, but current psychiatric trainees face many options for integrating psychopharmacology and psychotherapy into their future practices, including providing primarily medication-focused visits. We examined psychiatry residents' attitudes towards learning psychotherapy, practicing psychotherapy in the future, and overall identification as psychotherapists. METHODS: We surveyed residents from 15 US residency programs during 2006-2007. The survey included 36 Likert-scaled items inquiring about residents' attitudes towards their psychotherapy training and supervision, their level of psychotherapy competence, the role of psychotherapy in their psychiatric identity, and their future practice plans. Four items asked about personal psychotherapy experience. Here we describe findings related to attitudes concerning being a psychotherapist and future practice plans. RESULTS: Among 249 respondents, most (82%) viewed becoming a psychotherapist as integral to their psychiatric identity. Fifty-four percent planned to provide formal psychotherapy, whereas 62% anticipated psychopharmacology would be the foundation of treatment for most patients. Residents with personal psychotherapy experience and first-year postgraduate residents (PGY-1) were more likely to identify as psychotherapists, plan to pursue further psychotherapy training postresidency, and anticipate psychotherapy being central to their future practice. CONCLUSIONS: Despite concerns about the diminishing role of psychotherapy in the practice of psychiatry and in psychiatrists' professional identity, most psychiatric residents view psychotherapy as integral to their professional identities and future practice plans.

Epigenetic mechanisms activated by childhood adversity.

Adverse childhood experiences (ACE) impair health and life expectancy and may result in an epigenetic signature that drives increased morbidity primed during early stages of life. This literature review focuses on the current evidence for epigenetic-mediated programming of brain and immune function resulting from ACE. To address this aim, a total of 88 articles indexed in PubMed before August 2019 concerning ACE and epigenetics were surveyed. Current evidence partially supports epigenetic programming of the hypothalamic-pituitary-adrenal axis, but convincingly shows that ACE impairs immune function. Additionally, the needs and challenges that face this area are discussed in order to provide a framework that may help to clarify the role of epigenetics in the long-lasting effects of ACE.

Medical Student Socioeconomic Disadvantage, Self-Designated Disadvantage, and Subsequent Academic Performance.

We previously reported that medical school matriculants with higher scores on a continuous measure of socioeconomic disadvantage (SED) had worse academic performance than those with lower scores. Analyses examining performance concurrently by SED and self-designated disadvantage (SDA) are lacking, an important gap since SDA may reflect perceptions only partly shaped by SED. We examined the associations of the four possible combinations of SED and SDA categories-SED+/SDA+, SED+/SDA-, and SED-/SDA+ (versus SED-/SDA-as reference)-with U.S. Medical Licensing Examination (USMLE) Step 1 and 2 Clinical Knowledge performance and third-year clerkship Honors at one medical school. USMLE scores were lower than reference for SED+/SDA+ and SED-/SDA+ (but not SED+/SDA-) students. SED+/SDA+, SED+/SDA-, and SED-/SDA+ students all received fewer Honors than reference. The findings indicate SED and SDA each predict different features of medical school performance, suggesting avenues for enhancing disadvantaged students' success and the representativeness of the physician workforce.

Medical School Strategies to Address Student Well-Being: A National Survey.

PURPOSE: To describe the breadth of strategies U.S. medical schools use to promote medical student well-being. METHOD: In October 2016, 32 U.S. medical schools were surveyed about their student well-being initiatives, resources, and infrastructure; grading in preclinical courses; and learning communities. RESULTS: Twenty-seven schools (84%) responded. Sixteen (59%) had a student well-being curriculum, with content scheduled during regular curricular hours at most (13/16; 81%). These sessions were held at least monthly (12/16; 75%), and there was a combination of optional and mandatory attendance (9/16; 56%). Most responding schools offered a variety of emotional/spiritual, physical, financial, and social well-being activities. Nearly one-quarter had a specific well-being competency (6/27; 22%). Most schools relied on participation rates (26/27; 96%) and student satisfaction (22/27; 81%) to evaluate effectiveness. Sixteen (59%) assessed student well-being from survey data, and 7 (26%) offered students access to self-assessment tools. Other common elements included an individual dedicated to overseeing student well-being (22/27; 82%), a student well-being committee (22/27; 82%), pass/fail grading in preclinical courses (20/27; 74%), and the presence of learning communities (22/27; 81%). CONCLUSIONS: Schools have implemented a broad range of well-being curricula and activities intended to promote self-care, reduce stress, and build social support for medical students, with variable resources, infrastructure, and evaluation. Implementing dedicated well-being competencies and rigorously evaluating their impact would help ensure appropriate allocation of time and resources and determine if well-being strategies are making a difference. Strengthening evaluation is an important next step in alleviating learner distress and ultimately improving student well-being.

Medical Students' Perspectives on Trauma-Informed Care Training.

INTRODUCTION: Adults exposed to traumatic events during childhood commonly seek medical services, but health care practitioners hesitate to address and assess early trauma despite its known negative health effects. This study examines medical students' perspectives on a brief course that addressed the health care needs of patients exposed to adverse childhood experiences. METHODS: A convenience sample of 20 University of California, Davis medical students from the Summer Institute on Race and Health received 6 hours of trauma-informed care training. The course was delivered in 2-hour modules during the course of 3 days, and included lectures, discussions, and practice. A questionnaire assessing students' perspectives on training benefits, current practice challenges, and necessary resources to provide trauma-informed medical care was distributed posttraining. RESULTS: From the students' perspectives, this course increased their ability to recognize various clinical manifestations of adverse childhood experience exposure in adult patients. Students said they learned how to ask about and respond to adverse childhood experience disclosures and identify necessary resources to responsibly implement trauma-informed care in medical settings. Students identified provision of adequate resources and links to appropriate treatment identified as common challenges in providing health care to trauma-affected patients. CONCLUSION: Study findings illustrate that trauma training can fill a knowledge gap and provide associated benefits for medical students. Initial training may pique students' interest by demonstrating the relevance of trauma knowledge in clinical practice; additional training likely is needed to support skills and confidence.

Patient Preferences for Discussing Childhood Trauma in Primary Care.

CONTEXT: Exposure to traumatic events is common in primary care patients, yet health care professionals may be hesitant to assess and address the impact of childhood trauma in their patients. OBJECTIVE: To assess patient preferences for discussing traumatic experiences and posttraumatic stress disorder (PTSD) with clinicians in underserved, predominantly Latino primary care patients. DESIGN: Cross-sectional study. MAIN OUTCOME MEASURE: We evaluated patients with a questionnaire assessing comfort to discuss trauma exposure and symptoms using the Adverse Childhood Experiences (ACE) Study questionnaire and the Primary Care-PTSD screen. The questionnaire also assessed patients' confidence in their clinicians' ability to help with trauma-related issues. Surveys were collected at an integrated medical and behavioral health care clinic. RESULTS: Of 178 adult patients asked, 152 (83%) agreed to participate. Among participants, 37% screened positive for PTSD, 42% reported 4 or more ACEs, and 26% had elevated scores on both measures. Primary Care-PTSD and ACE scores were strongly positively correlated (r = 0.57, p < 0.001). Most patients agreed they were comfortable being asked about trauma directly or through screening questionnaires and did not oppose the inclusion of trauma-related information in their medical record. In addition, most patients perceived their clinician as comfortable asking questions about childhood trauma and able to address trauma-related problems. CONCLUSION: Screening is acceptable to most primary care patients regardless of trauma exposure or positive PTSD screening. Findings may aid primary care clinicians to consider screening regularly for ACEs and PTSD to better serve the health care needs of trauma-exposed patients.

Minimization of Childhood Maltreatment Is Common and Consequential: Results from a Large, Multinational Sample Using the Childhood Trauma Questionnaire.

Childhood maltreatment has diverse, lifelong impact on morbidity and mortality. The Childhood Trauma Questionnaire (CTQ) is one of the most commonly used scales to assess and quantify these experiences and their impact. Curiously, despite very widespread use of the CTQ, scores on its Minimization-Denial (MD) subscale-originally designed to assess a positive response bias-are rarely reported. Hence, little is known about this measure. If response biases are either common or consequential, current practices of ignoring the MD scale deserve revision. Therewith, we designed a study to investigate 3 aspects of minimization, as defined by the CTQ's MD scale: 1) its prevalence; 2) its latent structure; and finally 3) whether minimization moderates the CTQ's discriminative validity in terms of distinguishing between psychiatric patients and community volunteers. Archival, item-level CTQ data from 24 multinational samples were combined for a total of 19,652 participants. Analyses indicated: 1) minimization is common; 2) minimization functions as a continuous construct; and 3) high MD scores attenuate the ability of the CTQ to distinguish between psychiatric patients and community volunteers. Overall, results suggest that a minimizing response bias-as detected by the MD subscale-has a small but significant moderating effect on the CTQ's discriminative validity. Results also may suggest that some prior analyses of maltreatment rates or the effects of early maltreatment that have used the CTQ may have underestimated its incidence and impact. We caution researchers and clinicians about the widespread practice of using the CTQ without the MD or collecting MD data but failing to assess and control for its effects on outcomes or dependent variables.

A perfect childhood? Clinical correlates of minimization and denial on the childhood trauma questionnaire.

Childhood trauma has pervasive and enduring effects on myriad health outcomes, and the Childhood Trauma Questionnaire (CTQ) is a widely used screening tool. To assess recall and reporting biases, the CTQ includes a Minimization/Denial (MD) Scale, although this scale is typically omitted or not reported on. As this practice is not supported by empirical data, we sought to examine the clinical correlates of the CTQ MD Scale, as well as its function as a response bias index (i.e., its moderation effects). We examined correlations between the MD Scale and attachment style, temperament, personality, depression, and clinical diagnoses in a group of 200 adult psychiatric outpatients. Regression analyses were performed to assess the impact of MD on the relationships between the CTQ and clinical variables. Twenty percent of our sample met MD criteria. When patients were grouped as MD-positive versus MD-negative, significant between-group differences were found on several clinical measures. MD status, however, did not significantly moderate the relationships between the CTQ and clinical variables. This is one of the first clinically focused examinations of the CTQ's MD Scale. Although the MD Scale was associated with several clinical variables, it did not significantly moderate the relationship between the CTQ and clinical variables. These findings, therefore, call into question the value of the MD Scale as a response bias index, although they should be replicated in larger studies before the currently ubiquitous practice of ignoring it can be considered evidence-based.

Individual risk factors for physician boundary violations: the role of attachment style, childhood trauma and maladaptive beliefs.

OBJECTIVE: The assessment and remediation of boundary-challenged healthcare professionals is enhanced through examination of individual risk factors. We assessed three such factors--attachment style, childhood trauma and maladaptive beliefs--in 100 attendees (mostly physicians) of a CME professional boundaries course. We propose a theoretical model which draws a causal arc from childhood maltreatment through insecure attachment and maladaptive beliefs to elevated risk for boundary violations. METHODS: We administered the Experiences in Close Relationship Questionnaire (ECR-R), Childhood Trauma Questionnaire (CTQ), and Young Schema Questionnaire (YSQ) to 100 healthcare professionals (mostly physicians) attending a CME course on professional boundaries. Experts rated participant autobiographies to determine attachment style and early adversities. Correlations and relationships among self- and expert ratings and between different risk factors were examined. RESULTS: Five percent of participants reported CTQ total scores in the moderate to severe range; eleven percent reported moderate to severe emotional neglect or emotional abuse. Average attachment anxiety and attachment avoidance were low, and more than half of participants were rated "secure" by experts. Childhood maltreatment was correlated with attachment anxiety and avoidance and predicted expert-rated insecure attachment and maladaptive beliefs. CONCLUSION: Our findings support a potential link between childhood adversity and boundary difficulties, partly mediated by insecure attachment and early maladaptive beliefs. Furthermore, these results suggest that boundary education programs and professional wellness programs may be enhanced with a focus on sequelae of childhood maltreatment, attachment and common maladaptive thinking patterns.

Individual risk factors for physician boundary violations: the role of attachment style, childhood trauma and maladaptive beliefs.

OBJECTIVE: The assessment and remediation of boundary-challenged health care professionals is enhanced through examination of individual risk factors. We assessed three such factors - attachment style, childhood trauma and maladaptive beliefs - in 100 attendees (mostly physicians) of a continuing medical education (CME) professional boundaries course. We propose a theoretical model that draws a causal arc from childhood maltreatment through insecure attachment and maladaptive beliefs to elevated risk for boundary violations. METHODS: We administered the Experiences in Close Relationships Questionnaire Revised (ECR-R), Childhood Trauma Questionnaire (CTQ) and Young Schema Questionnaire (YSQ) to 100 health care professionals attending a CME course on professional boundaries. Experts rated participant autobiographies to determine attachment style and early adversities. Correlations and relationships between self-ratings and expert ratings and among different risk factors were examined. RESULTS: One fifth of participants reported moderate to severe childhood abuse; sixty percent reported moderate to severe emotional neglect. Despite this, average attachment anxiety and attachment avoidance were low, and more than half of participants were rated "secure" by experts. Childhood maltreatment was correlated with attachment anxiety and avoidance and predicted expert-rated insecure attachment and maladaptive beliefs. CONCLUSIONS: Our findings support a potential link between childhood adversity and boundary difficulties, partly mediated by insecure attachment and early maladaptive beliefs. Furthermore, these results suggest that boundary education programs and professional wellness programs may be enhanced with a focus on sequelae of childhood maltreatment, attachment and common maladaptive thinking patterns.

Caregiver Burden in Fragile X Families.

Complex caregiving issues occur in multigenerational families carrying the fragile X mutation and premutation. The same family members may care for children or siblings with fragile X syndrome (FXS) and for elderly parents with fragile X-associated tremor/ataxia syndrome (FXTAS). Family caregivers experience anxiety, depression, neglect of personal health care needs, employment difficulties, and loss of social support, leading to isolation and further psychiatric consequences. There is growing awareness of caregiver burden with regard to parents of children with FXS, but much less is known about the needs of informal caregivers of patients with FXTAS. In this paper, we review the available literature to date and provide suggestions for further exploration of caregivers' needs. Evidence-based strategies to address these needs are included. Many more research studies exploring caregiver burden in multigenerational fragile X families are needed, as well as studies aimed at investigating interventions and their impact on reduction.