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According to the attachment theory, early experiences with primary caregivers are the foundation of the expectations and beliefs about the self, others, and the world. It becomes particularly relevant in youth living in Residential Care (RC) settings, due to their past adversities. In this context, care workers can provide emotional healing experiences by acting as secure base figures and fostering conditions for youth's revision of their internal working models. The main aim of the present study was to explore the relationship between youth attachment dimensions and satisfaction with the residential caregiving environment, as well as, to analyze the potential mediator effect of the relationship quality with care workers in RC settings in the prior association. The sample was composed of youth, aged 12 to 18 (M = 15.54; SD = 1.66) living in RC settings in Porto district, Portugal (N = 248), that responded to three self-report measures. Results showed that attachment dimensions were associated with youth satisfaction with their caregiving environment, being this association mediated by the relationship quality with care workers. This study highlights the importance of investing in good relational experiences for youth satisfaction with the RC caregiving environment. [ABSTRACT FROM AUTHOR]

Attachment theory (AT) is one of the most popular theories used among professionals working in children and family welfare worldwide. An important contribution relies on the central role of professionals in creating an emotional environment for children and youth psychosocial adaptation and development. Nevertheless, little research has been focused on comprehending caregiving challenges in such complex contexts as RC settings from an attachment theoretical framework. This study will focus on caregivers' narratives on major processes involved when supporting young people, problematizing professional caregiving and relational challenges. A semi-structured interview was conducted with 22 professionals working on four RC facilities in Portugal. Three major themes emerged during the analysis: "it is life we are dealing with, it's not work," "unfortunately (or not) we are human beings" and "someone to listen when you have a monkey on your back." By acknowledging the complex dynamics involved in the caregiving process in out-of-home contexts, this study stresses the need for an important change in the relational paradigm in child welfare, advocating for the role of reflexive practice and self-knowledge as important premises for secure base behaviors. [ABSTRACT FROM AUTHOR]

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Haemophilia is a chronic and rare congenital bleeding disorder requiring treatment for life. An updated registry of data on this disease is of paramount importance for documenting prevalence, planning care, and evaluating effectiveness of resources in any country. The study presented in this paper is aimed at characterizing Portuguese patients' clinical condition and demography, as well as the replacement therapy used in their treatment, based on hemo@record data, a technological solution that supports the National haemophilia registry. The analysis of 110 patients records confirmed the high prevalence of haemophilia A (75.5%) compared with haemophilia B (11.8%) and a large incidence in the severe levels (or the existence of people with mild severity without diagnosis and, consequently, without proper treatment) promoting insight about the portrayal of haemophilia in Portugal. This study should be extended as the registry evolves fostering an ever more efficient management of resources and ultimately a better quality of care for people with haemophilia. [ABSTRACT FROM AUTHOR]

Background: Functional disability affects a large percentage of adolescents with chronic pain. The functional disability inventory (FDI) has been widely described in the literature to assess functional disability, with good psychometric properties., Purpose: To translate and adapt the FDI to European Portuguese language and assess the validity, reliability, and measurement error of this version in adolescents with chronic musculoskeletal pain and, specifically, with neck and low back pain., Method: The translation and cross-cultural adaptation of the FDI was conducted according to international guidelines. After that, 1730 adolescents completed the following scales and questionnaires: FDI, Nordic Musculoskeletal Questionnaire, Numeric Pain Rating Scale, Pain Catastrophizing Scale, Depression, Anxiety and Stress Scale, Tampa Scale of Kinesiophobia, and Basic Scale on Insomnia complaints and Quality of Sleep. Sixty-three of these adolescents, with at least one painful body site, completed the questionnaire twice to assess reliability and measurement error. Exploratory factor analysis and hypothesis testing was used to assess construct validity., Results: Cronbach's alpha ranged from 0.81 and 0.88, ICC was 0.86 (95%CI:0.77; 0.92), the SEM and the SDC were 2.50 and 6.93 (total score of 60 points), respectively. Fair to moderate correlations were obtained between FDI and pain intensity ( r s = 0.33 to 0.43), catastrophizing ( r s = 0.41 to 0.44) depression, anxiety, and stress ( r s = 0.48 to 0.53), fear of movement ( r s = 0.32 to 0.42), and sleep impairments ( r s = 0.34 to 0.38). The factor analysis suggested a two-factor solution., Conclusion: The European Portuguese version of the FDI has very good internal consistency, good test-retest reliability, and construct validity when used in a sample of community adolescents with chronic pain.Implications for rehabilitationOne of the most widely instruments used to assess functional disability is the Functional Disability Inventory (FDI), which in its original version has good psychometric properties and is recommended by the Pediatric Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials;However, the FDI has not been translated yet into European Portuguese language and its psychometric properties have not been assessed in adolescents with chronic spinal pain;This study suggests that the European Portuguese version of the FDI has very good internal consistency, good test-retest reliability as well as construct validity when used in a sample of community adolescents with chronic spinal pain;Therefore, these findings suggest the use of the European Portuguese version of the FDI to assess the functional disability in adolescents with chronic spinal pain.

National Patient Registries (NPR) have an important role in the management of haemophilia and other inherited bleeding disorders, representing powerful instruments to support healthcare and research. Computer software to assist the NPR is crucial, as it facilitates the introduction of the data from a national universe that will be centralized and merged into a unique location, thus ensuring a greater reliability and accuracy of the collected data, avoiding duplication of patients. In Portugal, despite the efforts and recognition of the need of a NPR, just recently the protocol for the establishment of the computer software to support the Portuguese National Registry of Haemophilia and other Congenital Coagulopathies (PorR H&CC) was approved. This paper aims to present this newly developed computerized solution, as well as to report the main variables and information that will be available. The development of this application, which includes a set of sociodemographic, clinical and treatment data, was based on the principles of WFH, and the database that supports the NPR, with anonymized data, is operated and maintained in accordance with the Data Protection Law. Currently, the first data are available on the application. Our focus now is to ensure more registries and continuous data entry in order to have complete information on the characterization of the haemophilia patient population in Portugal., Competing Interests: The authors stated that they had no interests which might be perceived as posing a conflict or bias., (Schattauer GmbH.)

This article describes the experience of developing an interactive Health Information System (iHIS) currently under test in a hospital, which benefited from the practices of the User-Centred Design (UCD), in a Participatory Design (PD) approach. Techniques from the Human-Computer Interaction (HCI) and/or Usability Engineering (UE), combined with traditional Software Engineering (SE), allowed an effective and usable solution from the user's point of view. The good results usually achieved with this approach were confirmed. Despite these good results, we deem that if there is not some control of the procedure by the project manager, it may be difficult to end the requirement analysis, since requirement reformulation is fostered.

This paper describes the application of task analysis within the design process of a Web-based information system for managing clinical information in hemophilia care, in order to improve the requirements elicitation and, consequently, to validate the domain model obtained in a previous phase of the design process (system analysis). The use of task analysis in this case proved to be a practical and efficient way to improve the requirements engineering process by involving users in the design process.

Nowadays, information systems combined with the Internet, have a significant role in data storage, as in the efficiency and promptness of data transfer and can offer a large contribute in managing and manipulating the information resulting from treatment and attendance of chronic patients, as hemophiliacs. On the other hand, the Internet also created the opportunity of patients to insert data concerning home treatments. This paper briefly describes the modeling process of a Web-based information system to help the management of inherited bleeding disorders integrating, diffusing and archiving large sets of information from heterogeneous sources in scope of the hemophilia care at the Hematology Service of Coimbra Hospital Center, in Portugal.