Sickle cell anaemia control mission: Implementation of a comprehensive care model in Anuppur, Madhya Pradesh.

Background & objectives Sickle cell disease (SCD) is a common genetic disorder, predominantly found in the tribal population of India. The examples of models providing comprehensive care and management to individuals with SCD in public health facilities are sparse. The Sickle Cell Anaemia Control Mission is one such model implemented by Jan Swasthya Sahyog, a non-profit organization in collaboration with the National Health Mission in the Anuppur district of Madhya Pradesh. This article aimed to identify the key learnings from this programme that can guide the public health system strengthening with respect to SCD. Methods The Sickle Cell Anemia Control Mission Programme included door to door screening for anaemia, SCD and blood group. SCD cases were included in the programme and other individuals with Anemia were referred for further care. Care for individuals with SCD included counselling, provision of hydroxyurea, regular follow up of clinical parameters and management of complications. Care for individuals with SCD was provided through monthly patient support group (PSG) meetings and regular outpatient /in-patient care at public health facilities. Quantitative data on programme design, screening and patient management collected during programme implementation were used for analysis. Results A total of 39421 persons were screened in 18 months (August 2018-March 2020). Of these 81.9 per cent persons were anaemic, 16.9 per cent had sickle cell trait and 779 (1.98%) had SCD. Eighty-six already diagnosed individuals joined the programme for care. People from all caste categories were diagnosed with SCD. Out of 865 individuals with SCD, 157 underwent regular 9-11 months follow up and showed improvement in clinical symptoms and drug compliance. Interpretation & conclusions Central India has a significant burden of anaemia and SCD. This study found that SCD is present in non-tribals as well. PSGs are an efficient way to deliver non-emergency care for chronic diseases such as SCD.

"Breaking the news"-post-autism spectrum disorder diagnosis group intervention for parents to 6-18-year-old children.

This study evaluated the effectiveness of a 3-session group intervention for parents who had received a diagnosis of autism for their child within the past month. The intervention group (N = 41) was compared to Treatment-as-Usual (N = 40): one meeting with a social worker after the diagnosis feedback meeting. Parental stress was evaluated in both groups within a week and then a month after the diagnosis. The findings indicate an increase in the experienced parental stress for the comparison group on all six indices, while in the intervention group there was an increase only on two indices. That is to say, the intervention reduced stress that occurred in the first month after the diagnosis. Further analyses revealed that parent satisfaction with the group intervention was the single most important variable in predicting stress reduction. We argue that parent support groups immediately after their child's diagnosis are effective and important, and probably superior to a single post-diagnosis meeting.

In this study, we looked at a program for parents whose child was recently diagnosed with autism. We compared a group of parents who went through a 3-session program with another group who had just one meeting with a social worker after getting the diagnosis. We checked how stressed these parents felt one week after the diagnosis and one month later. The results showed that the stress increased for the group with only one meeting, but for the group in the program, the stress increased only in a few areas. This means the program helped reduce stress in the first month after the diagnosis. We also found that parents who liked the group program were less stressed. This suggests that support groups for parents right after the diagnosis are helpful and important to reduce stress.

Exploring the journey of supporters in bereavement support groups: Experiences, sense-making, and social connections.

This study aimed to explore facilitators' experiences in bereavement support groups as they relate to their experiences of personal loss. Semi-structured interviews were conducted with nine facilitators who had experienced such grief, and data were analyzed qualitatively using a modified grounded theory approach (M-GTA). The analysis revealed two categories and nine subcategories: (i) 'Experiences in group activities,' encompassing positive and negative experiences during activities, and (ii) 'Structuring of Meaning,' the process of deciphering for oneself in relation to one's experience of loss and life. These two categories interacted with each other, and it was important for facilitators to find meaning in their activities, loss experiences, and lives for the stable continuation of bereavement support group activities. These findings underscore the importance of facilitators following and supporting the sense-making process.

Diversity-On: A Diversity-Sensitive Online Self-Help Program for Family Caregivers-A Protocol for a Mixed Methods Study.

BACKGROUND: Scientific research has consistently emphasised the high levels of stress encountered by family caregivers of individuals living with dementia. However, conventional self-help approaches remain underutilised. The 'Diversity-On' study addresses this issue. The study employs a storytelling approach to develop and evaluate an online self-help program that is participatory and diversity-sensitive, thereby ensuring congruence with diverse identities and lifeworlds. METHODS: The study uses a mixed-methods design, comprising the allocation and implementation of the intervention, the development of stories, a process evaluation (N = 20) and an outcome evaluation (quantitative: N = 130, qualitative: N = 20). The study's primary focus is its comprehensive participatory approach, integrated throughout the research process. The study is dependent on the input of a number of stakeholders, all of whom are committed to advocating for the concerns of patients. DISCUSSION: Given its participatory methodology and intersectional perspective, the 'Diversity-On' study is anticipated to yield a number of significant outcomes. The study has the potential to empower family caregivers of individuals living with dementia who are under high stress, empowering them to take part in self-help groups despite multiple barriers, thus alleviating their burden. Additionally, it has the capacity to promote the well-being of caregiving relatives who are providing care and are experiencing high levels of stress. The study's objective is to maintain home care arrangements for as long as possible, in accordance with the values and preferences of care recipients and their families. The study intends to develop and assess a customised online self-help resource that is suitable for a diverse range of users and that remains accessible beyond the study period. TRIAL REGISTRATION: The project is subsequently registered in ClinicalTrials.gov.

Investigating the Social Correlates Associated With Getting Help After a Suicide or Not: An Important Unexamined Bereavement Question.

Seeking to provide more systematic information on treatment-seeking and those not seeking help after a suicide, we investigated demographic, experiential and grief problems related correlates among recently suicide bereaved adults, conducting an on-line survey of a sample of U.S. 1,132 adults who lost a loved one to suicide during the last six years. Focusing upon first-degree relative loss survivors (n = 222) we hypothesized those not seeking help would be more likely to report conventional religiosity, greater social support and more use of alternative treatment modalities. Instead, we found those not seeking help were almost twice as likely to not attend religious services, compared to help seekers. Social support enhanced the bereaved individuals' pursuit of treatments and those who did not obtain help appeared reluctant to getting non-traditional treatment support. Help seekers were more likely to experience post-traumatic growth and less likely to see suicide loss survivorship as stigmatizing.

The effect of the peer support intervention on internalized stigma among Thai patients with tuberculosis: A repeated measures design.

Background: Internalized stigma among patients with tuberculosis (TB) significantly affects delayed diagnosis, increased disease transmission, and poor treatment outcomes. However, conclusive empirical evidence on psychosocial interventions to reduce internalized stigma among patients with TB in Thailand remains scarce. Objective: This study aimed to examine the impact of a peer support intervention on reducing internalized stigma among patients with TB in Thailand. Methods: A one-group within-subjects repeated-measure design was conducted in the Muang Maha Sarakham district, Thailand, from February 2023 to July 2023. The study included 26 participants who met specified criteria. Measurements were taken at baseline, three months, and six months following TB diagnosis and medication treatment. The peer support intervention comprised TB health education, psycho-educational sessions, self-management support, and home visits. The Internalized Stigma of Tuberculosis Scale Thai Version was used to measure internalized stigma. Statistical analyses included descriptive statistics and repeated measures ANOVA. Results: Mean scores of total internalized stigma and its sub-dimensions (alienation, stereotype endorsement, discrimination experience, social withdrawal, and stigma resistance) differed significantly across the three-time points (p <0.001, p <0.001, p <0.001, p <0.001, p <0.001, p = 0.002, respectively). Furthermore, stigma resistance scores significantly increased from pre-intervention to three months (p = 0.005) and from pre-intervention to six months (p = 0.007). However, no significant increase was observed from three to six months (p = 0.079). Conclusions: The study underlines the positive impact of peer support intervention in reducing internalized stigma among patients with TB in Thailand over time. The findings suggest that interventions focusing on peer support can potentially address internalized stigma, highlighting the importance of integrating these strategies into healthcare practices to enhance patient care and improve TB management outcomes.

The Role of Patient Organisations-Patients' and Parents' Views and Experience of Hirschsprung's Disease.

In many countries, patient organisations offer advice and the exchange of experiences to Hirschsprung's disease patients and their families. Professional treatment by experienced health care providers and the availability of life-long multidisciplinary follow-up care are essential. However, outside the clinic, patients and their families have to manage life on a day-to-day basis at home, which often brings up uncertainties and questions: Parents go through different stages during the diagnosis and treatment of their child, the affected children themselves go through many different stages of development, and even through the course of adulthood, new questions regarding the chronic disease may arise. Patient organisations can support the patients and their families at all stages of life by listening, offering information in an understandable way, connecting people, and sharing others' experiences. This enables families and patients to develop a better understanding of the rare disease and promotes their management strategies and confidence. The holistic approach of patient organisations aims to complement the medical treatment. Therefore, the referral of all patients and their families to patient organisations should be part of the medical advice in the treatment of Hirschsprung's disease.

Illness experience and (unmet) needs of women with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH): a qualitative analysis of an online forum.

OBJECTIVE: Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) is a congenital condition characterized by the underdevelopment or complete absence of the uterus and the upper part of the vagina. Diagnosis is commonly made during adolescence, a sensitive period for psychophysical development, following the absence of menstruation. Having MRKH syndrome can have a profound and multifaceted psychosocial impact that characterizes these women's subjective experiences, although it continues to be qualitatively understudied. This article explores the lived experience of women with MRKH spontaneously recounted on an online support forum. The aim was to gain insight into the features of the syndrome experience to understand deeply the emotional and social impact of the condition and the individual needs expressed online. METHODS: Using a naturalistic observation stance, data was collected from an online support forum for MRKH women and systematically analyzed using thematic analysis. RESULTS: Four main interconnected themes are identified: the impact of being diagnosed with MRKH, the difficult interaction with the medical environment, challenging social relationships, and the unmet needs of MRKH women. CONCLUSION: A multidisciplinary and person-centered approach that provides effective and sensitive management of the condition and its psychosocial implications, is essential. Recommendations for future research and practical clinical implications for healthcare professionals are proposed.

Group interventions for people with primary progressive aphasia and their care partners: Considerations for clinical practice.

Primary progressive aphasia (PPA) describes a group of language-led dementias. Speech and language therapy is the main available intervention for people with PPA. Despite best practice recommendations for speech and language therapy to include access to group therapies (Volkmer et al, 2023a), research evidence to date has predominantly focused on delivery in individual sessions. The aim of this study was to gather the collective intelligence of expert speech and language therapists/pathologists delivering group therapy for people with PPA to synthesize guidance for clinicians. This paper describes a qualitative study using narrative synthesis methods. Data were collected using the Template for Intervention Description and Replication - TIDiER. Eight respondents described a total of 17 different groups. Respondents worked across healthcare, research clinics and third sector organizations in Australia, Canada, Spain, the USA and the UK. For the purposes of analysis, groups were divided into two main types: (1) groups delivering specific therapy interventions; and (2) groups providing broader opportunities for conversational practice and support. This initial synthesis of the current state of the art in PPA therapy groups highlights several important considerations around candidacy, content and ecological validity of delivering group intervention for people with PPA.

Somebody to Lean on: Understanding Self-Stigma and Willingness to Disclose in the Context of Addiction.

Substance use self-stigma is a barrier to treatment and can negatively impact individuals' well-being and treatment engagement. Given the mixed findings in previous research and the limited specific investigation into the concept of self-stigma within the context of opioid misuse, examining factors associated with self-stigma in the context of opioid use disorder (OUD) is warranted. The current study examines the influence of individual-level factors (race, sex, urban/rural status, support group attendance) on self-stigma and willingness to disclose opioid use. Data for this study were from a larger study of OUD-related stigma among adults in Pennsylvania, U.S. The current study included participants who indicated a personal past or current history with OUD were included (n = 84). Exploratory factor analysis and multiple indicators, multiple causes (MIMIC) model were used to explore the associations between demographic factors (i.e., sex, age, race/ethnicity, urban/rural status), attendance at mutual support groups, and self-stigma factors. Results indicated that sex and attendance at mutual support groups significantly predicted levels of self-stigma. Women and individuals with no previous experience attending mutual support groups endorsed lower levels of self-stigma. Additionally, attendance at mutual support groups predicted willingness to self-disclose past and present opioid use. Individuals who reported no history of attending mutual support groups demonstrated less willingness to disclose past and present OUD use compared to participants who were support group attendees. The current research findings enhance the understanding of OUD-related self-stigma by examining its relationship with individual-level factors, disclosure, and attendance to mutual support groups. The results offer insights into the influence of sex and support group attendance on self-stigma and disclosure. These findings have significant clinical implications for developing future interventions and promoting health policy changes.

Peer support as pressure ulcer prevention strategy in special school learners with paraplegia.

Background: Adults with spinal cord injuries perceived peer support as beneficial in preventing secondary health conditions, but the role of peer support among adolescent learners with paraplegia in special schools is still unknown. Objectives: To explore the perspectives of current and previous learners with paraplegia on peer support to prevent pressure ulcers in a special school. Method: A qualitative, exploratory, descriptive study design was used. The authors conducted 12 semi-structured telephonic, audio-recorded interviews and a focus group discussion with current and previous learners with paraplegia attending a special school. The interviews were transcribed verbatim and translated, and data were organised using the Nvivo-12 Pro program. Through conducting an inductive thematic analysis categories, sub-themes and themes were identified from the participants' narratives. Results: The participants' perspectives included positive and challenging aspects of peer support reflected in four sub-themes: group-based support, individual peer mentoring, challenges with peer support and the roles of the school physiotherapist regarding peer support. Conclusion: Learners saw peer support as a crucial strategy in preventing and reducing pressure ulcers. Establishing a peer support system with group and individual components in special schools could be a game-changer to end pressure ulcers among learners with paraplegia and ensure better health and educational outcomes. Clinical implications: Physiotherapists in special schools should support peer support initiatives among learners with paraplegia to ensure successful pressure ulcer prevention.

Can Support Groups Improve Treatment Adherence and Reduce Sexual Risk Behavior among Young People Living with HIV? Results from a Cohort Study in South Africa.

Adolescents and young adults living with HIV (AYLHIV) in sub-Saharan Africa experience poorer HIV outcomes than adults, including lower ART adherence and virologic suppression. They also have high rates of unprotected sex, increasing the risk of adverse sexual health outcomes and onward transmission. This one-arm, pre-post study investigates a structured 14-session support group aiming to boost treatment adherence and sexual protective behavior for AYLHIV in South Africa. Logistic and Poisson regression analyses were performed on self-reported pre- and post-intervention survey data collected approximately 7.5 months apart from a cohort of 548 AYLHIV. Participants were significantly more likely to report at least 95% adherence at follow-up and rate their health as "good;" they also demonstrated greater treatment knowledge and had fewer absences from school overall and due to illness. Among sexually active AYLHIV, contraception use at last sex increased significantly, while condom use did not. Effects were small, and greater programmatic emphasis on adherence and multifaceted service packages is likely necessary to promote viral suppression. Nonetheless, the intervention addresses an important gap in service provision for AYLHIV in South Africa. Findings denote the potential for incorporating care and treatment components into sexual and reproductive health interventions tailored for AYLHIV.

Artificial Intelligence-Based Co-Facilitator (AICF) for Detecting and Monitoring Group Cohesion Outcomes in Web-Based Cancer Support Groups: Single-Arm Trial Study.

BACKGROUND: Commonly offered as supportive care, therapist-led online support groups (OSGs) are a cost-effective way to provide support to individuals affected by cancer. One important indicator of a successful OSG session is group cohesion; however, monitoring group cohesion can be challenging due to the lack of nonverbal cues and in-person interactions in text-based OSGs. The Artificial Intelligence-based Co-Facilitator (AICF) was designed to contextually identify therapeutic outcomes from conversations and produce real-time analytics. OBJECTIVE: The aim of this study was to develop a method to train and evaluate AICF's capacity to monitor group cohesion. METHODS: AICF used a text classification approach to extract the mentions of group cohesion within conversations. A sample of data was annotated by human scorers, which was used as the training data to build the classification model. The annotations were further supported by finding contextually similar group cohesion expressions using word embedding models as well. AICF performance was also compared against the natural language processing software Linguistic Inquiry Word Count (LIWC). RESULTS: AICF was trained on 80,000 messages obtained from Cancer Chat Canada. We tested AICF on 34,048 messages. Human experts scored 6797 (20%) of the messages to evaluate the ability of AICF to classify group cohesion. Results showed that machine learning algorithms combined with human input could detect group cohesion, a clinically meaningful indicator of effective OSGs. After retraining with human input, AICF reached an F1-score of 0.82. AICF performed slightly better at identifying group cohesion compared to LIWC. CONCLUSIONS: AICF has the potential to assist therapists by detecting discord in the group amenable to real-time intervention. Overall, AICF presents a unique opportunity to strengthen patient-centered care in web-based settings by attending to individual needs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/21453.

Barriers and Enablers to Retention in HIV Care and Adherence to Antiretroviral Therapy: Evidence from Dar es Salaam, Tanzania.

Purpose: To explore the enabling factors, barriers, and strategies to improve retention in HIV care and adherence to antiretroviral therapy (ART) among adults (18 years and above) living with HIV in Dar es Salaam, Tanzania. Methods: We conducted a descriptive qualitative study to better understand and explore enablers, barriers, and strategies to improve retention in HIV care and adherence to antiretroviral therapy (ART) among PLHIV in Dar es Salaam, Tanzania. Focus group discussions (FGD) were conducted with a semi-structured discussion guide between December 2021 and June 2022. A non-random purposive sampling technique was used to select PLHIV and people involved in provision of healthcare and socioeconomic support to PLHIV. Thematic analysis was used to identify and interpret the themes. Results: Three major themes with 10 sub-themes emerged. Participants indicated that family and partner support, peer-support group/adherence clubs, and healthcare provider counselling on medication adherence facilitated retention and adherence to ART. In contrast, stigma and discrimination, financial constraints, disease outbreaks such as the COVID-19 pandemic, myths and misconceptions about HIV, and side effects of antiretrovirals were mentioned as barriers. Strengthening community and patient education about HIV and ART through peer support groups and financial support for poor PLHIV were the proposed mitigation. Conclusion: Addressing the challenges to ART adherence may require a more holistic approach. We recommend the implementation of peer support groups and financial support through small microfinance groups as interventions to increase retention in HIV care and adherence to ART in the study area.

The role of peer support in recovery among clients with mental illness attending the psychiatric service in a tertiary hospital in Malaysia: a qualitative study.

BACKGROUND: The understanding that mental health recovery is a personal and subjective experience informs mental health policies in many countries. However, most of the populations in these studies are from the West, limiting their applicability in Asia. Peer support in mental health refers to helping and mentoring people who have overcome similar obstacles. Despite being proven to be effective in promoting recovery, little is known about its use in Malaysian psychiatric patients. This study aims to explore the participants' perspectives on their concept of recovery and how the peer support group (PSG) aid them to achieve recovery. METHODOLOGY: This study was conducted on clients with mental illness who attended the PSG provided by the Community Psychiatry and Psychosocial Intervention Unit in National University Malaysia Medical Centre. A qualitative generic inductive approach was employed in this thematic exploratory study. Purposive sampling was the method used to collect the data for this thematic exploratory study. In-depth interviews of 11 study participants were audio recorded and transcribed verbatim. Data were analyzed using Braun and Clarke (2006) descriptive thematic analysis method. RESULTS: The findings of this study highlighted six key themes; three pertaining to the participants' perspectives on the meaning of recovery (1. Gaining self-reliance and social inclusion, 2. Personal growth and improved life circumstances in recovery, and 3. Symptoms improvement) and another three pertaining to how the peer support group aids recovery (1. Empowerment and growth through peer support, 2. Promoting well-being, 3. Social connection and support). CONCLUSION: The findings of this study provide valuable insights into the perspectives of psychiatry clinic patients enrolled in PSG on the concept of recovery and the role of such groups in their recovery journey. The findings demonstrated that the PSG complemented the participants' perspectives on recovery, reinforcing the notion that a comprehensive and person-centered approach to mental health services is essential for successful and sustained recovery outcomes.

The clinical effectiveness of the Mind/Body Program for Infertility on wellbeing and assisted reproduction outcomes: a randomized controlled trial in search for active ingredients.

STUDY QUESTION: Does the Mind/Body Program for Infertility (MBPI) perform better, due to certain distinctive elements, than a partly matched support group in improving the wellbeing and medically assisted reproduction (MAR) outcomes of women with elevated distress levels in a clinical setting? SUMMARY ANSWER: While robust enhancements occurred in the wellbeing overall, the cognitive behavioural and formalized stress management elements of the MBPI allowed a significantly stronger improvement in trait anxiety, but not in other mental health and MAR outcomes, compared with a support group. WHAT IS KNOWN ALREADY: Mind-body psychological programmes adjacent to MAR have been found to improve women's mental states and possibly increase chances of pregnancy. However, not enough is known about the programme's effectiveness among patients with elevated distress levels in routine clinical settings, nor is it clear which of its particular ingredients are specifically effective. STUDY DESIGN, SIZE, DURATION: A pre-post design, single-centre, randomized controlled trial was performed between December 2019 and October 2022 (start and end of recruitment, respectively). The sample size (n = 168) was calculated to detect superiority of the MBPI in improving fertility-related quality of life. Randomization was computer-based, with random numbers concealing identities of patients until after allocation. PARTICIPANTS/MATERIALS, SETTING, METHODS: The trial was conducted at a large university teaching hospital. A total of 168 patients were randomly assigned to the mind-body (MBPI) group (n = 84) and the fertility support (FS) control group (n = 84). Patients received a 10-week, 135-min/week group intervention, with the FS group following the same format as the MBPI group, but with a less restricted and systematic content, and without the presumed effective factors. The number of patients analysed was n = 74 (MBPI) and n = 68 (FS) for post-intervention psychological outcomes, and n = 54 (MBPI) and n = 56 (FS) for pregnancy outcomes at a 30-month follow-up. MAIN RESULTS AND THE ROLE OF CHANCE: Significant improvements occurred in both groups in all psychological domains (adjusted P < 0.001), except for treatment-related quality of life. Linear mixed-model regression analysis did not reveal significantly greater pre-post improvements in the MBPI group than in the FS group in fertility-related quality of life (difference in differences (DD) = 4.11 [0.42, 7.80], d = 0.32, adjusted P = 0.124), treatment-related quality of life (DD = -3.08 [-7.72, 1.55], d = -0.20, adjusted P = 0.582), infertility-specific stress (DD = -2.54 [-4.68, 0.41], d = -0.36, adjusted P = 0.105), depression (DD = -1.16 [3.61, 1.29], d = -0.13, adjusted P = 0.708), and general stress (DD = -0.62 [-1.91, 0.68], d = -0.13, adjusted P = 0.708), but it did show a significantly larger improvement in trait anxiety (DD = -3.60 [-6.16, -1.04], d = -0.32, adjusted P = 0.042). Logistic regression showed no group effect on MAR pregnancies, spontaneous pregnancies, or live births. LIMITATIONS, REASONS FOR CAUTION: The follow-up only covered MAR-related medical outcomes and no psychological variables, and their rates were not equal in the two groups. Biological factors other than age, aetiology, and duration of infertility may have confounded the study results. Loss to follow-up was between 5% and 10%, which may have led to some bias. WIDER IMPLICATIONS OF THE FINDINGS: The psychologically and medically heterogeneous sample, the normal clinical setting and the low attrition rate all raise the external validity and generalizability of our study. The MBPI works not only in controlled conditions, but also in routine MAR practice, where it can be introduced as a cost-effective, low-intensity psychological intervention, within the framework of stepped care. More studies are needed to further identify its active ingredients. STUDY FUNDING/COMPETING INTEREST(S): The authors received no financial support for the research, authorship, and/or publication of this article. The authors have no conflict of interest to disclose. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov NCT04151485. TRIAL REGISTRATION DATE: 5 November 2019. DATE OF FIRST PATIENT'S ENROLMENT: 15 December 2019.

[Multidisciplinary support in cancer care: Pair working physician/psychologist in the support of children of affected parents by cancer]. / Accompagnement pluridisciplinaire en binôme médecin/psychologue dans le cadre de l'accompagnement des enfants de parents atteints par le cancer.

Supporting children of affected parents by cancer is challenging whether for patients, families and healthcare teams. Several care methods have been developed to support these children (e.g. individual psychological support, support group). However, professionals may feel uncomfortable with their own theoretical and practical limits. Thus, pair working physician/psychologist can make sense in order to melt the different expertise and to provide advices, open discussion and remediation in the family behaviors and feelings. The aim is to help parents communicate with their children about the disease in order to respond appropriately to the child's needs and questions. Our study is observational, around five clinical situations. We deal with parental psychological function, family communication, marital function, and parent-child relationship… Most of the time, children of cancer patients live a stressful experience with major psycho-emotional impact. Inappropriate coping mechanism can be subjected to misperception and lack of interaction with their parents. The question often expressed is the balance between telling the truth and protecting children. However, studies have reported positive effects of interventions around children needs. Thus, the doctor-psychologist pair allows for adaptability of responses to family functioning, children and parents, and thus ensures holistic support for the patient with cancer.

Mental Health Support Is an Unmet Need for Long-term Burn Survivors: A Web-based Survey.

A National Trauma Research Action Plan identified the involvement of burn survivors as critical informants to determine the direction of research. This study employed a web-based survey to identify care gaps in a sample of burn survivors. We surveyed burn survivors from around the United States through social media and email contact with the Phoenix Society for Burn Survivors. We elicited demographic info, burn history, and unmet needs. Statistical analysis was performed to test our hypothesis that lack of access to mental health support/professionals would be identified as an unmet need in long-term burn survivors. Of 178 survey respondents, most were at least 10 years removed from the date of their burn injury (n = 94, 53%). Compared with those less than 3 years from their burn injury, individuals greater than 10 years were at least 5 times more likely to note a lack of access to mental health support [11-20 years OR 8.7, P < .001; >20 years OR 5.7, P = .001]. About 60% of Spanish speakers reported lack of support group access was among their greatest unmet needs, compared with 37% of English speakers (P = .184). This study highlights the need for ongoing access to mental health resources in burn survivors. Our findings emphasize that burn injury is not just an acute ailment, but a complex condition that evolves into a chronic disease. Additional studies should focus on the experiences of Spanish-speaking burn survivors, given small sample size leading to a likely clinically significant but not statistically different lack of access to support groups.

Small programs, big challenges: Reimagining the evaluation of clinical teaching in genetic counseling.

Within the health professions education system, a significant proportion of teaching and learning occurs in the clinical setting. As such, the need to measure effective teaching for accreditation standards, faculty development, merit pay, academic promotion, and for monitoring the safety of the learning environment has led to numerous universities developing instruments to evaluate teaching effectiveness in this context. To date; however, these instruments typically focus on the student perspective, despite evidence demonstrating that student evaluations of teaching (SETs) lack correlation with learning outcomes and are not a true measure of teaching effectiveness. This issue is further exacerbated in small health professional training programs, such as genetic counseling, where clinical teachers may only supervise 1-3 students per year. As a result, not only are SETs more confounded due to small sample sizes, but a direct conflict exists between respecting learner anonymity and providing timely and relevant feedback to faculty. In such contexts, even using SETs to evaluate the nature of the learning environment may be unreliable due to student concerns about identifiability and fear of retaliation for unfavorable evaluation. This paper will review the literature regarding SETs, barriers to this process within the clinical setting, and the unintended downstream consequences. Options for addressing issues related to the use of SETs will be considered, with particular focus on the process of reflection and the use of teaching consultations or peer support groups as a means to improve teaching effectiveness in this learning environment.