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Purpose: ShopTalk is a therapeutic game, created to help youth living with cancer talk about their illness in a non-threatening way. The aim of this study is to learn how the game is being used in clinical settings and to gather information regarding the usefulness of ShopTalk in establishing a therapeutic relationship and in assessing key psychosocial issues in the child's life.Methods: ShopTalk was distributed at a social work pediatric oncology conference and to 70 sites. Game holders were asked to complete a survey regarding their clinical experience using ShopTalk.Results: Responses came from 110 professionals. ShopTalk has been found to be as an effective tool in identifying coping skills and psychological adjustment, as well as issues related to family relationships, depression/sadness, stress, prognosis, peer relationships, and self-esteem. Respondents found ShopTalk useful from diagnosis to end of life. Qualitative feedback suggested therapeutic value along with discomfort with specific questions.Conclusion: ShopTalk appears to be a beneficial therapeutic tool in building rapport and identifying and discussing difficult issues with medically ill children. Areas for future versions of the game and research exploring patient/therapist outcomes are discussed. [ABSTRACT FROM AUTHOR]

As treatment options have improved, there has been a significant increase in the life expectancy of HIV-infected children and adolescents. For most adolescents, the time comes when it is appropriate to transition from pediatric care to an adult or community-based provider. In response to a program closure, a transition readiness scale was developed. A total of 39 caregivers of HIV-infected youth (ages 10-18) and 12 youth over the age of 18 years were interviewed at two time points. Barriers associated with transition were identified and addressed between visits. Transition readiness improved and state anxiety decreased significantly from the first time point to the last visit (approximately 7 months later). Not having a home social worker was the most reported concern/need identified. Barriers to transition and interventions utilized to assist with transitioning care are discussed. [ABSTRACT FROM AUTHOR]

Objective: To examine the psychosocial stressors experienced by fathers of children diagnosed with HIV/AIDS.Methods: Thirty-one fathers whose children (ages 6 to 19) were participating in pediatric HIV clinical trials completed self-report measures of parenting stress, psychological distress, and need for psychosocial services.Results: Over half of this sample experienced significantly elevated levels of both parenting stress and psychological distress compared to standardized norms. Ninety-seven percent of these men reported the need for services including gender-specific support groups, assistance with discipline, disease management, and assistance with planning for the future.Conclusions: Elevated levels of parenting stress and psychological distress in fathers of children living with HIV suggest the need for additional psychological intervention in this population. [ABSTRACT FROM AUTHOR]

Objective: Past research has demonstrated that self-disclosure of traumatic or secretive information produces observable health benefits. Self-disclosure has also been linked, albeit less consistently, to improved psychological health. The present study examined the physiological and psychological consequences of children's self-disclosure of their HIV/AIDS status to friends.Methods: Data were collected twice, one year apart, from 64 caregiver-child dyads in which all of the children were infected with HIV. Dependent variables included the child's CD4%, self-concept, and level of behavioral problems.Results: Children who had disclosed their HIV+ diagnosis to friends during the 1-year course of the study had a significantly larger increase in CD4% than children who had told their friends before the study or those children who had not yet disclosed their HIV+ diagnosis to friends. This effect remained significant when the child's age and level of medication (protease inhibitors) were statistically controlled. Self-disclosure to friends did not impact the child's behavior or self-concept.Conclusions: This is the first study to investigate the effect of self-disclosure in children. The results were consistent with previous studies showing the positive health consequences of self-disclosure in adults, and suggest potentially important implications for professional and familial care givers of HIV/AIDS individuals. [ABSTRACT FROM AUTHOR]

Despite the growing numbers of HIV-infected school-aged children, we know very little about the mental health status of this group. This longitudinal study examined the frequency of psychological distress symptoms in HIV-infected children between the ages of 6 and 11 years at three time points over a period of two and one-half years. Children were assessed using the Dominic, a pictorial instrument that assesses for 7 psychological distress symptoms of childhood. In addition, family and demographic variables were collected at Time 1. Children were found to be relatively well-adjusted, with low to moderate incidence of psychological distress. While there were no significant changes in frequency of psychological distress symptoms from Time 1 to Time 3, the prevalence of overanxious and depressive symptomatology increased over time. Implications for clinical practice and future research will be discussed. [ABSTRACT FROM AUTHOR]

Purpose: To determine the distribution of diagnosed SARS-CoV-2 infections by testing modality (at-home rapid antigen [home tests] versus laboratory-based tests in clinical settings [clinical tests]), assess factors associated with clinical testing, and estimate the true total number of diagnosed infections in New York State (NYS)., Methods: We conducted an online survey among NYS residents and analyzed data from 1012 adults and 246 children with diagnosed infection July 13-December 7, 2022. Weighted descriptive and logistic regression model analyses were conducted. Weighted percentages and prevalence ratios by testing modality were generated. The percent of infections diagnosed by clinical tests via survey data were synthesized with daily lab-reported results to estimate the total number of diagnosed SARS-CoV-2 infections in NYS July 1-December 31, 2022., Results: Over 70% of SARS-CoV-2 infections in NYS during the study period were diagnosed exclusively with home tests. Diagnosis with a clinical test was associated with age, race/ethnicity, and region among adults, and sex, age, and education among children. We estimate 4.1 million NYS residents had diagnosed SARS-CoV-2 infection July 1-December 31, 2022, compared to 1.1 million infections reported over the same period., Conclusions: Most SARS-CoV-2 infections in NYS were diagnosed exclusively with home tests. Surveillance metrics using laboratory-based reporting data underestimate diagnosed infections., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Published by Elsevier Inc.)

Objectives: To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs)., Methods: A total of 149 AYAs aged 18-39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP., Results: At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC., Significance of Results: Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.

This study assessed changes in smoking behavior and secondhand smoke (SHS) exposure after implementation of the U.S. Department of Housing and Urban Development (HUD) rule prohibiting the use of cigarettes, cigars, pipes, and waterpipes in all federally subsidized public housing, including within residential units (apartments). Using quantitative data from a repeated cross-sectional mail survey of New York State residents of five public housing authorities (N = 761 at Wave 1, N = 649 at Wave 2), we found evidence of policy compliance (99% decrease in odds of self-reported smoking in units, OR = 0.01, p < 0.01, CI: 0.00−0.16), reduced SHS incursions (77% decrease in odds of smelling smoke within developments, OR = 0.23, p < 0.01, CI: 0.13−0.44), and lower reported smoking rates in July 2018 (9.5%, down from 16.8%), 10 months after implementation of the rule. Despite evident success, one-fifth of residents reported smelling smoke inside their apartment at least a few times per week. This study provides insights into how the policy was implemented in selected New York public housing authorities, offers evidence of policy-intended effects, and highlights challenges to consistent and impactful policy implementation.

Palliative care (PC) integration into the care of pediatric oncology patients is growing in acceptance and has been shown to improve the quality of life of children with cancer. Yet timing for referrals and referral practices remain inconsistent, and PC remains underutilized. We conducted a retrospective chart review of pediatric oncology patients treated at an academic institution between January 2015 to November 2018. Data collected included demographics, disease and therapy characteristics, and consultation notes, specifically documenting existence of predetermined "high yield triggers" for PC consultation. Among 931 eligible patients the prevalence of PC consultation was 5.6% while approximately 94% of patients had at least 1 trigger for PC consultation. The triggers that more often resulted in PC consultation included: symptom management needs (98%; n = 51) high-risk disease (86%; n = 45), poor prognosis (83%; n = 43), multiple lines of therapy (79%; n = 41) and a documented ICU admission (67%; n = 35). Our findings suggest that the high yield triggers for palliative care consultation that pediatric oncologists identify as important are not translating into practice; incorporating these triggers into a screening tool may be the next step to improve early PC integration.

Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents., Methods: Caregivers of a child who died from cancer were invited to complete a 46-item survey through a closed social media (Facebook) group ("Parents who lost children to cancer"). In four months' time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi-square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12., Results: Approximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control., Conclusions: Through quantitative and open-ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed., (© 2019 Wiley Periodicals, Inc.)

Objectives: Integrating smoking cessation interventions into dental care is an efficient way to intervene with smokers. This study of dentists and dental hygienists who provide dental care to Medicaid-insured patients explores awareness of Medicaid smoking cessation benefits, awareness of Quitline resources, beliefs about perceived role in providing tobacco interventions, and behaviors around clinical intervention., Methods: In 2015, we conducted a survey of dentists and hygienists who serve Medicaid patients in New York State., Results: A total of 182 dentists and 92 hygienists completed the survey. Ninety percent reported that helping patients quit smoking is part of their role, while 51.0 percent reported feeling confident in their ability to counsel a patient about quitting. Most respondents (73.4 percent) asked patients about tobacco use, 83.7 percent advised smokers to quit, and 49.1 percent assisted with quit attempts. We found that 26.7 percent were aware that dentist smoking cessation counseling is covered by Medicaid, and 15.5 percent were aware that hygienist smoking cessation counseling is covered. A total of 38.9 percent were aware of any Medicaid coverage for smoking cessation. Awareness of the Medicaid smoking cessation benefit was associated with intervention behaviors of asking and assisting., Conclusions: Most dental care providers see smoking cessation as part of their role, but few are aware of the Medicaid benefits available to help patients. Expanding coverage of and promoting Medicaid benefits for smoking cessation have the potential to increase the reach and quality of smoking cessation interventions for Medicaid-insured smokers, a population disproportionately affected by tobacco use., (© 2019 American Association of Public Health Dentistry.)

Pediatric phase I clinical oncology trials represent a unique cohort of patients who have not responded to standard therapies and remain highly vulnerable to treatment toxicity and/or disease burden. Incorporating a palliative care consultation into the care plan for those with relapsed/refractory cancer where chance of cure is limited is generally recommended. A retrospective chart review of pediatric phase I trials revealed that palliative care was consulted in <20% of patients, most often for symptom management. Efforts to increase the use of palliative services in this population may enhance quality of life for children and families enrolled in phase I studies., (© 2019 Wiley Periodicals, Inc.)

Purpose: To understand the tobacco acquisition practices of low-income smokers in New York State in light of high cigarette prices due to high cigarette taxes., Design: Eight focus groups with low-income smokers were conducted in spring 2015 and 2016 (n = 74)., Setting: New York City (NYC) and Buffalo, New York., Participants: Low-income adults aged 18 to 65 who smoke cigarettes regularly., Method: Qualitative analysis of focus group transcripts that explored differences and similarities by region. We used the interview guide-which covered the process of acquiring cigarettes and the impact of cigarette prices-as a framework for analysis to generate themes and subthemes (deductive coding). We also generated themes and subthemes that emerged during focus group discussions (inductive coding)., Results: Some smokers in Western New York have switched to untaxed cigarettes from Native American reservations, whereas low-income smokers in NYC described convenient sources of bootlegged cigarettes (packs or loosies) in their local neighborhood stores, through acquaintances, or on the street. Familiarity with the retailer was key to accessing bootlegged cigarettes from retailers., Conclusions: Smokers in this study could access cheaper cigarettes, which discouraged quit attempts and allowed them to continue smoking. The availability of lower priced cigarettes may attenuate public health efforts aimed at reducing smoking prevalence through price and tax increases.

It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least "a little benefit" and half reported at least "a little burden" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.

Introduction: Pharmacotherapy and counseling for tobacco cessation are evidence-based methods that increase successful smoking cessation attempts. Medicaid programs are required to provide coverage for smoking cessation services. Monitoring utilization is desirable for program evaluation and quality improvement. Various methodologies have been used to study utilization. Many factors can influence results, perhaps none more than how smokers are identified. This study evaluated the utilization of smoking cessation services using various methods to estimate the number of smokers within New York State's (NYS's) Medicaid program in 2015., Methods: Estimates of utilization were generated based on Medicaid claims and encounters and four sources of smoking prevalence: two population surveys, one Medicaid enrollee survey, and diagnosis codes. We compared the percentage of (estimated) smokers utilizing cessation services, and the average number of services used, across fee-for-service and managed care populations, and by cessation service category., Results: Statewide, smoking prevalence estimates ranged from 10.9% to 31.5%. Diagnosis codes identified less than 45% of smokers estimated by surveys. A similar number of cessation counseling (199106) and pharmacotherapy services (197728) were used, yet more members utilized counseling (126839) than pharmacotherapy (91433). The estimated percentage of smokers who used smoking cessation services ranged from 15.1% to 43.4%, and the estimated average number of cessation services used ranged from 0.31 to 0.90 per smoker., Conclusion: Smoking prevalence estimates obtained through surveys greatly exceed prevalence observed in diagnosis codes in NYS's Medicaid data. Use of diagnosis codes in the analysis of smoking cessation benefit utilization may result in overestimates., Implications: Selection of a smoking prevalence data source for similar analyses should ultimately be based on completeness of the data and applicability to the population of interest. Evaluation of smoking cessation benefit utilization and the effectiveness of tobacco control campaigns aimed to increase utilization requires a well-defined methodology which ensures reliable baseline data. Comparing utilization estimates across populations or state lines can be misleading, as differences in how estimations were generated can greatly bias observed results.

Children and adolescents with Neurofibromatosis type 1 (NF1) are at increased risk for wide-ranging behavioral, developmental, and cognitive impairments and decreased quality of life. To date, no psychosocial screening tool has been developed to quickly assess the symptoms that 1) can be addressed during routine medical appointments in children with NF1, 2) can produce interpretable and actionable results, 3) can be integrated into medical care, and 4) can quickly identify patients at risk in order to better address that the provision of appropriate care are available. This study was conducted to test the overall usability of the Distress Thermometer (DT) and symptom checklist and concordance of DT ratings between pediatric patients, their caregivers and medical providers. Eighty youth (ages 7-21) living with NF1 completed the DT and an accompanying checklist. The findings of this study suggest the DT and symptom checklist was acceptable and feasible to complete in a clinic setting. A small subset reported high distress that required further assessment and intervention. Significant discordance between distress ratings of caregivers and children and healthcare providers was also found. Overall, the DT and accompanying symptom checklist provide important information to identify the presence of distress and contextualize the child's distress but is limited by not assessing whether these symptoms interfere with the child's daily life.

Objective: Psychosocial distress is under-recognized in children with cancer and other serious medical illnesses because of a focus on pressing medical concerns., Aims: This study assessed the validity, inter-rater reliability, sensitivity/specificity, acceptability, and feasibility of administration of a pediatric distress thermometer (DT) designed to screen for the presence of psychosocial distress in youth with serious medical illnesses., Materials & Methods: Two hundred eighty-one patient-caregiver-provider triads were enrolled from two hospital outpatient clinics. Patients diagnosed with cancer and other life-threatening diseases, caregivers, and providers completed the DT and a DT acceptability rating. Patients and caregivers completed standardized measures of anxiety, depression, pain, and fatigue. Providers completed a measure of disease severity. Data collectors completed a feasibility rating., Results: The DT was significantly correlated with both caregiver and patient reports of depression, anxiety, pain, and fatigue, exhibiting concurrent validity. Parent, child, and caregiver report demonstrated significant, moderate inter-rater reliability, with lower concordance between raters in the youngest age group. The DT is a sensitive instrument for screening of psychosocial distress when compared with the selected gold standard (Brief Symptom Inventory 18 depression subscale and the Children's Depression Inventory). The DT is not highly specific but quickly identifies those in need of further psychosocial assessment., Discussion: Screening, using an adapted pediatric DT, is valid, feasible, and acceptable to patients, caregivers, and medical providers across chronic medical illnesses., Conclusion: As patient and caregiver reports are not always concordant, both patient and caregiver report of distress are important for the provider to obtain clinically meaningful information to guide interventions. Published 2015. This article is a U.S. Government work and is in the public domain in the USA., (Published 2015. This article is a U.S. Government work and is in the public domain in the USA.)

Objective: The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young adults (AYAs) living with a serious illness., Methods: Fifty-two participants (age 16-28) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) were presented pages randomly from My Thoughts, My Wishes, My Voice and, Five Wishes, and asked to rank 25 items on several factors, including how likely they would be to complete each statement. Participant opinion on suggested changes in content, design, format, and style was obtained and resulted in development of a new document., Results: AYAs living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered., Conclusions: AYA views of what should be included in an advance care planning guide were incorporated into a new document, Voicing My Choices, that provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one's voice. We provide guidance on how to incorporate this tool into care.

Background: Thirty years after the origin of the field of psycho-oncology, limited data exist about the work practices of professionals providing psychosocial care to children with cancer and their families., Method: A survey was designed to assess training, work environment, theoretical orientation, services provided, subspecialty areas or areas of special interest, satisfactions, challenges, and continuing education needs of pediatric psycho-oncologists. Members of national and international psycho-oncology organizations were invited to participate in the web-based survey., Results: Seven hundred eighty-six professionals from 63 countries responded. The sample consisted mostly of psychologists (41%), physicians (20%), and social workers (14%). Approximately half of the participants worked in a designated psycho-oncology unit. Psychologists and social workers provided the majority of psychosocial services. Individual sessions with parents were most common (42%), followed by sessions with children (41%), survivors (36%), families (31%), and siblings (25%). Therapies provided include cognitive behavioral therapy (50%), relaxation (43%), psychodynamic psychotherapy (27%), play therapy (26%), and imagery (23%). Two-thirds reported having appropriate supervision, 37% were conducting research, and only half felt their salary was appropriate. Differences in therapeutic modalities were found by country. Clinicians desire training on clinical interventions, improving communication with medical staff, research, and ethics., Conclusions: An international cohort of clinicians providing pediatric psycho-oncology services perform a wide variety of tasks, use a range of therapeutic approaches, and report considerable work satisfaction. Problem areas include professional inter-relations, inadequate supervision, and need for additional specialized training. Opportunity exists for global collaboration in pediatric psycho-oncology research and practices to enhance clinical effectiveness and reduce professional isolation., (Copyright © 2012 John Wiley & Sons, Ltd.)

Objective: Gastrointestinal stromal tumors (GIST) are very rare, especially within the pediatric population. The National Institutes of Health initiated a multidisciplinary clinic to bring together a worldwide group of healthcare providers with experience in the study and treatment of GIST in order to better understand the disease and to examine whether this is a population at psychosocial risk., Methods: Seven GIST clinics have been held to date. Participants completed a GIST Psychosocial Assessment containing items covering demographic factors, family stressors, general health, psychosocial concerns, psychiatric history, and self-identified needs. Our sample consists of 60 adult patients (ages 18-66) and 18 pediatric patients (ages 9-17)., Results: Living with pain at least a few days a week was endorsed by those whose self-reported health status was good to excellent (49% of the adult cohort and 25% of the pediatric cohort). Pain was significantly associated with anxiety, difficulties with family relationships, behavior problems, and psychotropic medication use. Body image and appearance concerns were endorsed by over half of the cohort. Post-trauma symptoms were prevalent for those newly diagnosed and those living with GIST for over 15 years., Conclusions: This is the first study to explore the psychosocial impact of GIST. Individuals living with GIST experience chronic pain, post-trauma symptoms and significant anxiety along with an expressed need for interventions to help them manage their anxiety. Due to the chronic nature of this disease, the GIST population is at risk for long-term psychological distress. Psychosocial interventions in pediatric and adult care settings are offered., Competing Interests: The authors do not have a financial relationship with the organization that sponsored this research or receive any royalties or compensation related to the NIH GIST Clinic. This research was supported by the Center for Cancer Research, National Cancer Institute. The opinions expressed in the article are the views of the authors and do not necessarily reflect the views of the Department of Health and Human Services or the United States government. The authors have full control of all primary data and agree to allow the journal to review our data if requested.

Background: Discussing end-of-life (EOL) issues is difficult with any population. These conversations are even more challenging with adolescents and young adults due to the poignancy of the situation and the need for developmentally appropriate language., Objective: To explore whether adolescents and young adults living with a life-limiting illness find it acceptable and helpful to have a planning document to share their wishes and thoughts regarding EOL care. If so, to learn about specific concerns adolescents and young adults feel are important to include in such a document., Methods: Adolescents and young adults with metastatic cancer or pediatric human immunodeficiency virus (HIV)-1 infection were presented Five Wishes, an advance directive document for adults. Each participant was asked to critically evaluate each wish in terms of whether the concepts within were considered (1) appropriate to ask individuals the participant's age; (2) helpful for other people the participant's age to think about; (3) helpful to the participant to think about; (4) stressful to contemplate. Participants were also asked to suggest modifications and additions to the document., Results: Twenty patients completed the survey. Ninety-five percent of the participants reported that an advance directive like Five Wishes would be "helpful" or "very helpful" to themselves, 90% stated that the document would be helpful to others, and no patients found talking about the issues in Five Wishes "stressful" or "very stressful." Participants were more interested in items concerning how they wanted to be treated and remembered than items concerning medical decision-making., Conclusions: An advance care planning document may be appropriate and helpful for adolescents and young adults living with a serious illness. Future research should further validate the preferences identified by participants and explore whether an age-appropriate document can improve communication with family and staff in EOL care.

A cross-sectional study designed to document the use of psychotropic medication in a population of human immunodeficiency virus (HIV)-infected children and adolescents (n = 64) found 45% of the sample had been prescribed at least one psychotropic medication over a 4-year period. The most common medication category prescribed was antidepressants (30%), followed by stimulant-type medications (25%). This study suggests that psychotropic medications are commonly prescribed to HIV-infected children and adolescents. Close partnership with mental health professionals to develop treatment approaches for psychiatric disorders in youth living with HIV is recommended.

Background: The long-term psychological impact of pediatric sarcoma is largely unknown. As part of a cross-sectional study examining the late effects of pediatric sarcoma therapy, we examined whether psychological distress or posttraumatic stress symptoms are present in an adult cohort of pediatric sarcoma survivors., Method: Thirty-four patients participated in the study, an average of 17 years after their treatment ended, each completing the SCID module for Posttraumatic Stress Disorder, Impact of Events Scale, Brief Symptom Inventory (BSI) and a questionnaire assessing sociodemographic variables and psychosocial issues., Results: Significant persistent psychological distress characterized this cohort of patients. Seventy-seven percent scored in the clinical range on the BSI. Twelve percent met diagnostic criteria for PTSD. Current psychological distress was associated with intrusive thoughts and avoidant behaviors, male gender, employment, difficulty readjusting to work/school after treatment, and enduring worries about health. No differences were found based on age, presence of metastatic disease or time since diagnosis., Conclusions: This is the first report of a clinical evaluation of psychological distress in a cohort of pediatric sarcoma survivors treated with intensive multimodal cancer therapy. The results suggest that survivors of pediatric sarcoma might be at high risk for adverse psychological outcomes. Appropriate interventions are proposed.

As an increasing number of children infected with HIV live to older ages, the question of disclosure of the diagnosis (to the child and to others) becomes more crucial. Disclosure of a child's HIV diagnosis is a controversial and emotionally laden issue. One reason that families avoid disclosure is their fear of the negative impact on the child and family that the stigma associated with AIDS can bring. At the other end of the spectrum, are those families that choose to publicly disclose an HIV diagnosis. There are a number of reasons that a family may choose to go public with their child's diagnosis, although this has never been systematically assessed. The dearth of literature and research regarding the emotional impact of public life on a child as well as the interest of a number of non-public HIV-infected children to "go public" served as an impetus to conduct a study that directly examined the impact public disclosure has on the HIV-infected child and family. Specifically, findings pertaining to the decision making process, the impact public disclosure has had on the child's family, and the child's sense of self-worth at the time of the study and then again 4 years later are reviewed. Findings and implications for future research as well as interventions and strategies aimed at counseling families considering "going public" and helping to normalize the public child's life are discussed.

Parents report that trying to decide whether or not to disclose their HIV diagnosis to their children is as emotionally charged as learning of the diagnosis itself. As part of a larger study, interviews were conducted with 17 parent-child dyads recruited from patients being treated at the National Cancer Institute to understand the factors that affect the process of disclosure of a parent's HIV diagnosis and its consequences. Parents and HIV-infected children were also interviewed and were administered several standardized measures for collecting information on parental depression, family environment, and social support satisfaction. The factors associated with a parent's decision to disclose his or her diagnosis to the children, and implications for clinical practice and future research, are discussed.

Disclosure of the diagnosis of human immunodeficiency virus (HIV) infection or acquired immunodeficiency syndrome (AIDS) to a child is a controversial and emotionally laden issue. To understand the factors that affect the process of disclosure and its consequences, we studied 99 parent-child dyads recruited from patients being treated at the National Cancer Institute (NCI). Parents and HIV-infected children were interviewed and administered several standardized measures. Parental depression, family environment, social support satisfaction, socioeconomic status, child and parent gender, child's age, parental HIV serostatus, and disease severity were used to predict disclosure status. Results indicate that the majority of caregivers do disclose the diagnosis to the child, usually with no ill effects, and that age is the most significant predictor of whether or not a child has been told. The Centers for Disease Control and Prevention currently estimate that there are over 6611 children with AIDS (under age 13), and 2184 adolescents with AIDS (ages 13-19) in America. As an increasing number of children who are born infected with HIV live to older ages, the question of when and how to talk with them about their illness becomes more crucial. In addition to the growing number of children infected with HIV, there are many thousands of children profoundly affected by the impact of this disease on a close family member--a mother, father, sibling, or other relative in the kinship network. Yet, the initial reaction most adults have upon learning of their own, or of a family member's, HIV diagnosis is that the diagnosis must be kept a closely guarded secret. One reason frequently cited by parents and family members is their fear that the stigma of AIDS will have a negative impact on their children and their families. Disclosure of an HIV diagnosis to a child is a controversial and emotionally laden issue in the pediatric health-care community as well. However, no systematic research has studied the issues that surround disclosure of an HIV diagnosis to the patient and the factors that predict disclosure.