Development of a Self-Assessment Tool for the Nontechnical Skills of Hemophilia Teams.

BACKGROUND AND OBJECTIVES: The treatment of chronic illnesses requires health care professionals (HCPs) to master several nontechnical skills to meet patient care needs. This article aims to describe the rationale and the inductive process through which a self-assessment tool for the nontechnical skills of hemophilia teams was conceived, developed, and tested. METHODS: Starting from an explorative analysis of hemophilia HCP work experiences, the process followed 3 phases: an in-depth analysis of hemophilia HCP skills; the questionnaire development; and a pilot study. RESULTS: Using the voice of HCPs as a starting point, the tool proved to be able to identify precise cross-professional and intercultural challenges as well as related required and/or acquired skills in the hemophilia field. CONCLUSION: The proposed tool may contribute to providing HCPs with strategic knowledge to successfully perform everyday practices, to improve the effectiveness of hemophilia teams and the care model adopted by their centers, and to implement intercultural research in this field. It may be used to propose ad hoc training courses targeted by challenge, in order to fill the major gaps reported by the teams, or targeted by medical specialty or country (and therefore health care system) specificity.

Psychological interventions for people with hemophilia.

BACKGROUND: Managing hemophilia is challenging both in terms of medical treatment and its broad impact on many aspects of the individual's life, including self-perception. Several psychosocial issues are potentially relevant in the clinical management of hemophilia, including it being a chronic and incurable condition; e.g. people with hemophilia must adapt to optimally interact with peers and to practice sports - even choosing a sport represents an issue for perceived limitations, expectations and cultural influences on the individual and their family. People with hemophilia can react by denying their condition and its manifestations and not adhering to treatment. Due to the complexity of relationships surrounding genetic diseases, parents and relatives may have their own issues that contribute to making life easier or more difficult for the person with hemophilia. Anxiety, sadness and depression resulting in mental health disorders are reported in this population and may influence quality of life (QoL) depending on cultural background, religious beliefs, family support and other variables. OBJECTIVES: Primarily to assess the effectiveness of psychological therapies for improving the ability of people with hemophilia to cope with their chronic condition. SEARCH METHODS: We aimed to identify trials from the Cochrane Cystic Fibrosis and Genetic Disorders Group's Coagulopathies Trials Register, Embase and PsycINFO, CINAHL, MEDLINE and trial registries. We searched reference lists of included publications. Most recent search of the Group's register: 13 June 2019. SELECTION CRITERIA: Randomized controlled trials (RCTs) and quasi-RCTs in people with hemophilia of any age or gender, type A or B, any severity, with or without inhibitors, with or without HIV or hepatitis C virus. All psychological interventions for promoting emotional, intellectual and spiritual wellness. Individual, group or family group therapy interventions were eligible. DATA COLLECTION AND ANALYSIS: We independently assessed trials, extracted data and assessed the risk of bias and assessed the quality of the evidence using GRADE. MAIN RESULTS: Seven trials were included (362 participants randomized, data from 264 participants available for analysis); six of parallel design and one a partial cross-over design. One multicenter trial was conducted in Canada; the remaining six were single centre undertaken in the UK, USA, Iran and in the Netherlands. All trials had a high risk of bias for participant blinding and use of patient-reported outcomes. Evidence was retrieved on four interventions: psycho-education (DVD plus information booklet versus information booklet alone; computerised learning versus no intervention); cognitive therapy (auto-hypnosis (self-hypnosis) versus control); and behavioural therapy (relaxation (progressive or self control) versus no treatment). We also aimed to assess psychodynamic therapy and systemic therapy, but no trials were identified. Heterogeneity of the outcome measures and measurements precluded meta-analyses. No trial reported the cost of the psychological intervention and family adjustment. DVD plus information booklet compared to information booklet alone One trial (108 participants) showed coping strategies may lower pre-contemplation scores and negative thoughts, mean difference (MD) -0.24 (95%CI -0.48 - 0.00, low-certainty evidence), however, other measures of coping strategies in the same trial suggest little or no difference between groups, e.g. contemplation, MD (-0.09, 95%CI -0.32 - 0.14, low-certainty evidence). The same trial measured QoL and showed little or no difference between treatment groups for the physical domain, MD 0.59 (95% CI -3.66 to 4.84, low-certainty evidence), but may improve scores in the mental health domain for those receiving the booklet plus DVD compared to booklet alone, MD (4.70, 95% CI 0.33 to 9.07, low-certainty evidence). Mood or personal well-being were not reported. Computerised learning compared to no intervention Two trials (57 participants) reported on interventions aimed at children and adolescents and their impact on promoting a sense of self-efficacy (primary outcome 'Mood and personal well-being'), but only one showed an increase, MD 7.46 (95%CI 3.21 to 11.71, 17 participants, very low-certainty evidence); the second did not report control group data. One trial (30 participants) showed the intervention did not improve self-efficacy in adults, but appropriate data could not be extracted. Two trials (47 participants) reported coping strategies; one only reported within-group differences from baseline, the second showed an increase from baseline in coping strategies in the Internet program group compared to the no intervention group (disease-specific knowledge, MD 2.45 (95% CI 0.89 to 4.01); self-management ability and transition readiness, MD 19.90 (95% CI 3.61 to 36.19; low-certainty evidence). One trial reported QoL but with insufficient information to calculate changes from baseline; no difference in post-treatment scores was seen between groups, MD -8.65, 95% CI -18.30 to 1.00, very low-certainty evidence). Auto-hypnosis (self-hypnosis) compared to control There were two older trials that reported on this intervention (50 participants) focusing mainly on the secondary outcome 'physical health'; only one trial reported the primary outcome 'mood and personal well-being' (only within-group differences in the treatment group). Coping strategies and QoL were not assessed in the trials. Relaxation (progressive or self control) compared to no treatment Only one trial (seven participants) from 1985, was included which focused on 'physical health' and did not report on any of our primary outcomes. AUTHORS' CONCLUSIONS: Not all of the seven included trials analysed the effects of the interventions on our primary outcomes (mood and personal well-being, coping strategies and QoL). Three trials were conducted in the 1970s and 1980s using techniques of auto-hypnosis or relaxation and, in accordance with the needs and therapeutic possibilities of the time, they focused on secondary outcomes, e.g. frequency of bleeding (physical health) and adherence to the intervention. The four newer trials assessed psycho-educational interventions all mediated by the use of technologies (DVD or computer) and often created according to age needs of the target group. In these cases, attention was shifted to our pre-defined primary outcomes. This review has identified low- and very low-certainty evidence, prompting caution in its interpretation. The major problem we encountered was the heterogeneity of trial designs, of interventions and of outcome measures used across the trials. We strongly suggest that researchers consider developing a core outcome set to streamline future research; randomization was proven to be safe and acceptable, and blinding should be considered for those assessing patient-reported outcomes.

Health care professionals dealing with hemophilia: insights from the international qualitative study of the HERO initiative.

Background: Assessing the viewpoints of health care professionals concerning their work with chronic patients is a relatively new research topic, widely overlooked in the literature. However, understanding their subjective work experience is highly relevant for identifying problems and perceived resources, enhancing health service organisation, improving relationships or communication with patients, and maintaining well-being. Purpose and method: Qualitative data from the "Haemophilia Experience, Results and Opportunities" Initiative - a research program aimed at investigating the psychosocial aspects of hemophilia - were used to evaluate the experiences of 62 professionals from seven countries around the world. Semi-structured interviews were submitted to thematic analysis of elementary contexts with the aid of T-Lab software. Results: Five dominant themes emerged, identifying the main challenges that professionals have to deal with in their everyday work practice: caring for impaired adult patients; handling policies and stakeholders; providing counselling on diagnosis and reproductive choices; considering the role of family dynamics; coping with adolescent patients. Conclusion: The outcomes of the study provide an opportunity to develop the area of the non-technical skills in the core curriculum of those who work with chronic illnesses by focusing on cross-professional competences and by improving a comprehensive care model for hemophilia patients.

Subjective Experience of Illness Among Adolescents and Young Adults With Diabetes: A Qualitative Research Study.

Diabetes mellitus type 1 is a chronic illness that has its onset in childhood or adolescence. It is determined by the insufficient production of insulin. The main therapies consist of replacement of the lacking insulin, diet, exercise, and glycemic control. If treatment is managed by parents in childhood, adherence seems to be a difficult issue during adolescence. In order to understand the subjective experience of the illness and treatment, the present study aims to investigate the patients' subjective perspective by addressing a group of adolescents and young adults in pediatric care. A qualitative research design was adopted with semi-structured interviews, and later software thematic analysis was performed. Six core issues were deepened: family and health-care professional's mediation support for self-management, adherence to treatments as a boring responsibility, disclosure problems in peer relationships, difficulty in becoming autonomous in a period of socioeconomic crisis, illness as concern for the future, and seeking a normal life in daily activities. The knowledge can be useful for designing more appropriate interventions that favor the active engagement of patients.

The Hardier You Are, the Healthier You Become. May Hardiness and Engagement Explain the Relationship Between Leadership and Employees' Health?

The main goal of this study was to delve deeper into the relationship between transformational leadership and better general health status among employees. Based on the Job Demands-Resources model of occupational well-being, the current research investigated the role of transformational leadership, as a job resource, in fostering individual hardiness, as a personal resource, which may in turn result in higher levels of work engagement and, consequently, better general health status among employees. Data were collected from 358 white-collar employees in an Italian company. Most of them were women (52.9%) with a mean age of 44.42 years (SD = 9.22). To evaluate the hypothesis of a mediating role of employees' hardiness and work engagement within the relationship between transformational leadership and workers' general health, a bootstrapping approach was tested using a serial mediation model. In the current sample, enhanced levels of hardiness and work engagement among employees mediated the association between perceived levels of transformational leadership and individual general health conditions. These findings corroborated the role of transformational leadership as a strategic job resource in enhancing employees' hardiness and engagement with their work, which may in turn protect their general health status. Organizations willing to rely on a healthy workforce should implement human resource management strategies focused on leadership training capable of boosting employees' hardiness.

Acogimiento residencial terapéutico para niños y adolescentes: una declaración de consenso del Grupo de Trabajo Internacional sobre Acogimiento Residencial Terapéutico / Therapeutic Residential Care for Children and Youth: A Consensus Statement of the International Work Group on Therapeutic Residential Care

En muchos países desarrollados a lo largo del mundo las intervenciones en acogimiento residencial para niños y adolescentes se encuentran en un momento de creciente debate. Ante esta situación, se organizó una cumbre internacional en Inglaterra (primavera de 2016) con expertos de 13 países para reflexionar sobre el acogimiento residencial terapéutico (ART). Se partió de la siguiente definición de ART: "el acogimiento residencial terapéutico implica el uso planificado de un ambiente de convivencia multidimensional, construido a propósito, diseñado para desarrollar o proveer tratamiento, educación, socialización, apoyo y protección a niños y jóvenes con necesidades reconocidas de salud mental o conductuales, en cooperación con sus familias y la colaboración de un amplio espectro recursos comunitarios formales e informales». La reunión se caracterizó por el intercambio de información y evidencias y la preparación de una agenda internacional de investigación. Además, se discutieron las bases para una declaración de consenso. Esta declaración, originalmente publicada en inglés y ahora reproducida en español, comprende, entre otras cuestiones, cinco principios básicos de acogimiento que de acuerdo con el grupo de trabajo en acogimiento residencial terapéutico deben guiar el acogimiento residencial de jóvenes que se preste en todo momento (AU)

In many developed countries around the world residential care interventions for children and adolescents have come under increasing scrutiny. Against this background an international summit was organised in England (spring 2016) with experts from 13 countries to reflect on therapeutic residential care (TRC). The following working definition of TRC was leading: «Therapeutic residential care involves the planful use of a purposefully constructed, multi-dimensional living environment designed to enhance or provide treatment, education, socialization, support, and protection to children and youth with identified mental health or behavioral needs in partnership with their families and in collaboration with a full spectrum of community based formal and informal helping resources». The meeting was characterised by exchange of information and evidence, and by preparing an international research agenda. In addition, the outlines of a consensus statement on TRC were discussed. This statement, originally published in English and now reproduced in a Spanish translation, comprises inter alia five basic principles of care that according to the Work Group on Therapeutic Residental Care should be guiding for residential youth care provided at any time (AU)

[Therapeutic Residential Care for Children and Youth: A Consensus Statement of the International Work Group on Therapeutic Residential Care].

Therapeutic Residential Care for Children and Youth: A Consensus Statement of the International Work Group on Therapeutic Residential Care. In many developed countries around the world residential care interventions for children and adolescents have come under increasing scrutiny. Against this background an international summit was organised in England (spring 2016) with experts from 13 countries to reflect on therapeutic residential care (TRC). The following working definition of TRC was leading: “Therapeutic residential care involves the planful use of a purposefully constructed, multi-dimensional living environment designed to enhance or provide treatment, education, socialization, support, and protection to children and youth with identified mental health or behavioral needs in partnership with their families and in collaboration with a full spectrum of community based formal and informal helping resources”. The meeting was characterised by exchange of information and evidence, and by preparing an international research agenda. In addition, the outlines of a consensus statement on TRC were discussed. This statement, originally published in English and now reproduced in a Spanish translation, comprises inter alia five basic principles of care that according to the Work Group on Therapeutic Residental Care should be guiding for residential youth care provided at any time.

Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study.

The study illuminates the subjective experience of haemophilia in people who took part in the Haemophilia Experience, Results and Opportunities (HERO) initiative, a quali-quantitative research program aimed at exploring psychosocial issues concerning this illness around the world. Applying a bottom-up analytic process with the help of software for textual data, we investigated 19 interviews in order to describe the core themes and the latent factors of speech, to explore the role of different variables in shaping the participants' illness experiences. The five themes detected are feeling different from others, body pain, acquisition of knowledge and resources, family history, and integration of care practices in everyday life. We illustrate how nationality, age, family situation, the use of prophylaxis or on-demand treatment, and the presence of human immunodeficiency virus or hepatitis C virus affect the experience of our participants in different ways. Findings are used to bring insights on research, clinical practice, and psychosocial support.

Enemy construction after 9/11: aggressor identity effect on the representation of terrorism / Construção do inimigo após o 11 de setembro: os efeitos da identidade do agressor na representação do terrorismo / Construcción del enemigo después del 11 de setiembre: los efectos de la indentidad del agresor en la representación del terrorismo

At the time of the research, there were daily reports in the media regarding terrorist acts. What is it that indeed characterizes an act as being a terrorist one? From a psychosocial perspective, an ambiguous notion of terrorism may legitimate the ingroup/outgroup differentiation that affects intergroup relations. The aim of this research is to understand what people refer to when they talk about terrorism and to study the influence of different variables on the interpretation of some actions such as war or terrorism acts. Results on a sample of 251 University students confirm that the basic criterion for the evaluation of the actions is founded upon the distinction between military or civilian targets (i.e. target effect). However, some subjects use also a criterion based on the aggressor’s ethnic-cultural identity (i.e. actor effect).(AU)

No momento da pesquisa, haviam registros diários na mídia sobre ações terroristas. O que de fato caracteriza um ato como sendo terrorista? A partir de uma perspectiva psicossocial, uma noção ambígua de terrorismo pode legitimar a diferenciação de pertencimento ou não ao grupo, que afeta as relações intergrupais. O objetivo dessa pesquisa é entender ao que as pessoas se referem quando falam sobre terrorismo e estudar a influência das diferentes variáveis na interpretação de algumas ações como guerras ou atos terroristas. Resultados de uma amostra de 251 estudantes universitários confirmam que o critério básico para a avaliação destes atos é encontrado na distinção entre alvos civis ou militares (efeito alvo). No entanto, alguns participantes também usaram um critério baseado na identidade étnicacultural do agressor (efeito ator).(AU)

En el momento de la investigación, había registros diarios en la prensa sobre acciones terroristas. ¿Lo que de echo caracteriza a un acto como terrorista? A partir de una perspectiva psicosocial, una noción ambigua de terrorismo puede legitimar la diferenciación de pertenecimiento o no al grupo, que afecta a las relaciones intergrupales. El objetivo de esa investigación es entender a lo que las personas se refieren cuando hablan sobre terrorismo y estudiar a la influencia de las diferentes variables en la interpretación de algunas acciones cómo guerras ó actos terroristas. Resultados de una muestra de 251 estudiantes universitarios confirman que lo criterio básico para la evaluación de estos actos es encontrado en la distinción entre dianas civiles o militares (efecto diana). Todavía, algunos participantes también utilizaran un criterio basado en la identidad étnica-cultural del agresor (efecto actor).(AU)

Construção do inimigo após o 11 de setembro: os efeitos da identidade do agressor na representação do terrorismo / Construcción del enemigo después del 11 de setiembre: los efectos de la indentidad del agresor en la representación del terrorismo / Enemy construction after 9/11: aggressor identity effect on the representation of terrorism

At the time of the research, there were daily reports in the media regarding terrorist acts. What is it that indeed characterizes an act as being a terrorist one? From a psychosocial perspective, an ambiguous notion of terrorism may legitimate the ingroup/outgroup differentiation that affects intergroup relations. The aim of this research is to understand what people refer to when they talk about terrorism and to study the influence of different variables on the interpretation of some actions such as war or terrorism acts. Results on a sample of 251 University students confirm that the basic criterion for the evaluation of the actions is founded upon the distinction between military or civilian targets (i.e. target effect). However, some subjects use also a criterion based on the aggressor's ethnic-cultural identity (i.e. actor effect).

No momento da pesquisa, haviam registros diários na mídia sobre ações terroristas. O que de fato caracteriza um ato como sendo terrorista? A partir de uma perspectiva psicossocial, uma noção ambígua de terrorismo pode legitimar a diferenciação de pertencimento ou não ao grupo, que afeta as relações intergrupais. O objetivo dessa pesquisa é entender ao que as pessoas se referem quando falam sobre terrorismo e estudar a influência das diferentes variáveis na interpretação de algumas ações como guerras ou atos terroristas. Resultados de uma amostra de 251 estudantes universitários confirmam que o critério básico para a avaliação destes atos é encontrado na distinção entre alvos civis ou militares (efeito alvo). No entanto, alguns participantes também usaram um critério baseado na identidade étnicacultural do agressor (efeito ator).

n el momento de la investigación, había registros diarios en la prensa sobre acciones terroristas. ¿Lo que de echo caracteriza a un acto como terrorista? A partir de una perspectiva psicosocial, una noción ambigua de terrorismo puede legitimar la diferenciación de pertenecimiento o no al grupo, que afecta a las relaciones intergrupales. El objetivo de esa investigación es entender a lo que las personas se refieren cuando hablan sobre terrorismo y estudiar a la influencia de las diferentes variables en la interpretación de algunas acciones cómo guerras ó actos terroristas. Resultados de una muestra de 251 estudiantes universitarios confirman que lo criterio básico para la evaluación de estos actos es encontrado en la distinción entre dianas civiles o militares (efecto diana). Todavía, algunos participantes también utilizaran un criterio basado en la identidad étnica-cultural del agresor (efecto actor).

Process of normalization in families with children affected by hemophilia.

To understand the normalization process in families with hemophiliac children, and to explore the impact of two different therapeutic regimes on it (on-demand therapy and prophylaxis), we conducted a two-phase study using semistructured interviews. In the course of the first phase, we interviewed 13 parents belonging to 10 families with hemophiliac children in on-demand therapy. In the second phase, 5 years later, we repeated the interviews with three families who began prophylaxis at different times. We analyzed the interviews using text analysis software. The results show very different representations of hemophilia and daily life. Normalization processes involve the overcoming of a divided conception of life, and encourage the integration of care practices within daily life. Moreover, in our article we suggest that although prophylaxis facilitates the recovery of a regular family routine, it alone cannot produce normalization.

Relational climate and effectiveness of residential care: adolescent perspectives.

In Italy, the evaluation of residential care is particularly important in view of: (1) the process of deinstitutionalization; (2) the power of the public authorities to devolve the running of services, including residential communities, to private partners. The literature has stressed the importance of involving multiple stakeholders in the design and implementation of evaluative research. This article summarizes a research plan for the evaluation of child and adolescent residential communities based on the theoretical framework of developmental psychopathology and Bronfenbrenner's ecological model of human development. A study is presented on the perception that adolescents in care have of the community's relational climate-analyzed by way of everyday routines and communications with adults-and of the effects of the intervention. The results corroborate the hypothesis that the relational climate in a community is a good predictor of the efficacy of residential care.