Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review.

BACKGROUND: Since the beginning of human genetic research, there are very few publications sharing insights of the negative impact of rare genetic skin diseases (RGSD) on patients' experiences. This systematic review assessed the psychosocial implications of these conditions in terms of daily life experiences, emotional state, self-perception, and Quality of Life (QoL). METHODOLOGY: A systematic review was carried out on albinism, neurofibromatosis type 1 (NF1), birthmarks and inherited ichthyosis. The PubMed, Scopus, PsycArticle, PsychInfo, Psychology and Behavioral Sciences Collection, and SOCindex databases were queried. Inclusion criteria were adult patients with one of these RGSDs. Simple descriptive statistics and qualitative content analysis were conducted to summarize the main results reported by the authors. RESULTS: Of the 9987 articles retrieved, 48 articles were included: albinism (16), NF1 (16), inherited ichthyosis (10), birthmarks (6). The majority of the studies on albinism were conducted in Africa. Twenty-seven studies quantitatively assessed diverse psychological parameters: 13 showed a significant impact of the disease on QoL, five on emotional state, two on self-representation and two others on psychiatric comorbidities. Disease severity and visibility were good predictors of QoL (except for albinism). Body image and appearance concerns were also associated with QoL and emotional state. The 19 qualitative studies highlighted recurring themes across each of these diseases: discrimination and stigma during childhood and adolescence, discomfort in social interactions, guilt of transmission, the importance of social support from family and friends, altered daily life functioning, altered romantic and sex life, limited academic and professional aspirations, lack of interest and support from the medical field, and the unpredictability of the evolution of the disease. The only two mixed-method studies in this review were unable to contribute to any inferential analyses but could corroborate some of the qualitative findings. CONCLUSION: These results showed that RGSDs have a significant impact on different aspects of patients' lives. This review has demonstrated that there is a real need for support systems for patients with these diseases. Such systems should be developed to provide them with necessary information and to guide them through an appropriate care pathway.

Respiratory infection prevention: perceptions, barriers and facilitators after SARS-CoV-2.

BACKGROUND: Respiratory hygiene, especially in context of COVID-19, is of upmost importance. Healthcare professionals (HCPs) play an important role in the prevention of infections. Their perceptions of the subject are needed to tailor effective communication and training on prevention. METHODS: 20 French HCPs were questioned about their perceptions on respiratory hygiene and infections, by the means of recorded semi-structured interviews and a focus group. The interviews and focus group were transcribed then analysed through lexicometric and thematic content analyses. RESULTS: HCP discourse revolved around the use of face masks, the prevention and the characteristics of respiratory infections and the means to prevent them.COVID-19 excepted, HCPs considered respiratory infections as benign. They associated respiratory hygiene to the observance of cough etiquette, the preservation of lung health, the act of protecting oneself and others, and the adherence to safety protocols. Main barriers to good practices were organizational ones, such as the lack of consultation and mobilization of HCPs in the development of preventive measures, suboptimal information sharing and the physical and relational constraints of face masks. They advised means of improving communication and information promotion. CONCLUSION: Since the pandemic crisis, HCPs have developed a better awareness about the prevention of respiratory infections. Except for COVID-19, respiratory infections are mostly considered as benign. Barriers and facilitators evoked by HCPs will help to build national communication and tools.

Stigma Attached to Smoking Pregnant Women: A Qualitative Insight in the General French Population.

INTRODUCTION: Cigarette consumption during pregnancy has major health consequences for women and unborn children. The stigma of smoking during pregnancy might hinder mothers-to-be's access to adequate healthcare and smoking cessation, especially in disadvantaged groups. This qualitative study was designed to describe extensively the public stigma associated with smoking during pregnancy. AIMS AND METHODS: Participants were French adults recruited from the general population through social networks (N = 100). They were asked to answer three pairs of open-ended questions regarding cognitions, emotions, and behaviors elicited in the general population by pregnant smoking women. An inductive thematic analysis was performed and interjudge agreement was computed on 30% of the corpus analyzed deductively. Finally, independence (chi-square) between themes and gender, education, parenthood, and smoking status was tested. RESULTS: Themes (n = 25) were defined regarding cognitions (n = 9, eg, irresponsible, thoughtless, and unmindful), emotions (n = 8, eg, anger and disgust), and behaviors, (n = 8, eg, inform and persuade, and moralize and blame). Global interjudge agreement was strong (κ = .8). No difference was observed in themes according to gender, parental status, or education, indicating a heterogenous awareness of stigma. However, some differences were observed according to smoking status (χ 2 = 69.59, p = .02) (eg, nonsmokers more frequently stressed immorality). CONCLUSIONS: The stigma associated with smoking during pregnancy includes various components that might be measured and targeted in interventions to improve access to adequate healthcare and smoking cessation in this specific population. IMPLICATIONS: This qualitative study explores the stigma that the general French population attaches to pregnant women who smoke. Themes regarding cognitions (eg, irresponsible, thoughtless, and unmindful), emotions (eg, anger and disgust), and behaviors (eg, inform and persuade, and moralize and blame) were identified. These themes could guide further research regarding scale development and antistigma interventions to support smoking cessation.

Barriers and facilitators on hand hygiene and hydro-alcoholic solutions' use: representations of health professionals and prevention perspectives.

BACKGROUND: Healthcare-associated infections pose a serious problem in terms of health and mortality. Their prevention is a necessity, and healthcare professionals are one of their main vectors. Thus, they must be at the centre of preventative strategies. As hydro-alcoholic solutions (alcohol-based hand rub) represent the most effective means of preventing these infections, it is necessary to identify the representations, barriers, and facilitators of their use. METHOD: Forty-six healthcare professionals from two areas in France, New Aquitaine and Guadeloupe, were questioned about their practices through semi-structured registered interviews and four focus groups. Each interview and focus group were transcribed then analysed through lexicometric and thematic content analyses. RESULTS: The interviewed identified several barriers and facilitators related to the composition and characteristics of hydro-alcoholic solutions (unpleasantness, harmfulness, personal preferences for other hand hygiene products), personal factors (work habits, cognitive bias, lack of knowledge and communication) and organizational (professional constraints, product accessibility, financial resources). CONCLUSION: Strategies to prevent healthcare-associated infections should be constructed with consideration of psychosocial facilitators and barriers for healthcare professionals in using hydro-alcoholic solutions. These strategies should also ensure that they are well informed about the effectiveness of alcohol-based solutions, through prevention campaigns and scientific articles. This awareness should equally be conveyed with educational tools that involve healthcare professionals and use the social dynamics of their work environment.

A systematic review of complementary and alternative medicine in oncology: Psychological and physical effects of manipulative and body-based practices.

BACKGROUND: Complementary and Alternative Medicines (CAM) are widely used by cancer patients, despite limited evidence of efficacy. Manipulative and body-based practices are some of the most commonly used CAM. This systematic review evaluates their benefits in oncology. METHOD: A systematic literature review was carried out with no restriction of language, time, cancer location or type. PubMed, CENTRAL, PsycArticle, PsychInfo, Psychology and Behavioral Sciences Collection and SOCindex were queried. Inclusion criteria were adult cancer patients and randomized controlled trials (RCT) assessing manipulative and body-based complementary practices on psychological and symptom outcomes. Effect size was calculated when applicable. RESULTS: Of 1624 articles retrieved, 41 articles were included: massage (24), reflexology (11), acupressure (6). Overall, 25 studies showed positive and significant effects on symptom outcomes (versus 9 that did not), especially pain and fatigue. Mixed outcomes were found for quality of life (8 papers finding a significant effect vs. 10 which did not) and mood (14 papers vs. 13). In most studies, there was a high risk of bias with a mean Jadad score of 2, making interpretation of results difficult. CONCLUSION: These results seem to indicate that manipulative CAM may be effective on symptom management in cancer. However, more robust methodologies are needed. The methodological requirements of randomized controlled trials are challenging, and more informative results may be provided by more pragmatic study design.