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L’autoefficacia è correlata alla soddisfazione post-operatoria e alla percezione del proprio corpo in pazienti affetti da malformazioni anorettali?
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Transition from childhood to adolescence. Quality of life changes 6 years later in patients born with anorectal malformations
No full textBackground/purpose: Disease-specific quality of life (QoL) may be more or less relevant when children enter preadolescence/adolescence. Few attentions have been given to development and transition periods. Aim of the present longitudinal study is to evaluate ARM specific changes in QoL and the stability of QoL over 6 years. Methods: Questionnaires were sent to families of the AIMAR Association (in 2007 and in 2013/2014). They included the Hirschsprung’s Disease/ARM QoL Questionnaire (HAQL, [1]). Rank correlations and within group comparisons for the HAQL subscales were conducted analyzing the scores of time 1 vs time 2. Gender effects were tested. Results: 134 parents answered the questionnaires at time 1 and 73 at time 2. Results of the repeated Analyses of Variance indicated improvements in the continence subscales (“Presence of Diarrhea,” “Fecal Continence”). QoL significantly worsened in “Social and Emotional Functioning” and in “Body Image” areas. The analysis of stability of change indicates that QoL scores remain stable, with the exception of the Body Image area. Conclusions: Despite improvements in the continence areas, parents reported worse levels of QoL in the psychosocial areas, as their child grow. As patients grow, they might have more difficulties in daily and social activities, and feel more frequently ashamed and more dissatisfied with their body
Ongoing care for the patient with an anorectal malfromation; transitioning to adulthood
No full textPlanned health care transition can improve the ability of young adults to manage their own health care to effecively use health services and ultimately maximize life-long functioning and well-being. Transitional care is a purposeful, planned process that addresses the medical, psychosocial and educational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centered to adult-oriented healthcare systems. Unsuccessful surgical transtion may result in physical and mental health implications for young patients, negative long-term outcomes and suboptimal use of health care resources. Anorectal malformation and Hirschsprung patients are an especially vulnerable patient population with ongoing surgical, physiologic and pyschosocial challenges
Sexual well-being in adolescent and young adults born with arm: the perspective of the patients
No full textPurpose: Sexual well-being and sexual functioning are understudied in patients born with ARM. The aim of this exploratory study was to investigate sexual history, main fears, and problems encountered during sexual relationships. Methods: Before participating in a sexual education intervention, 21 adolescents or young adults (12 males; mean 28.8; SD 10.6) born with ARM, answered a ten-item questionnaire specifically developed to evaluate sexual well-being. Percentages and Chi-square were calculated. Results: 52.4% were married/had a partner. The majority (71%) declared that had sexual relationships. Mean age of the first sexual relationship was 18.8 (2.7) and 22.7 (3.8) for males and females, respectively. Females reported both more fear and experience of pain during sexual intercourse, compared to males. Main experienced problems and fears for male patients were loss of feces and premature ejaculation, followed by the fear of lack of erection and managing contraception. Main experienced problems and fears in females were loss of feces, pain, lack of desire, and lack of lubrication. In only few cases, patients asked for advices to a pediatric surgeon or to an adult surgeon specialized in ARM. Conclusions: Adult and adolescent patients may benefit of andrological/gynecological evaluation, psychological support, and sexual counseling to improve their sexual well-being
Going Beyond Counting First Authors in Author Co-citation Analysis
Full text linkThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Full text link“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
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