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1.
Death Stud ; : 1-10, 2024 Apr 10.
Artículo en Inglés | MEDLINE | ID: mdl-38597741

RESUMEN

The Integration of Stressful Life Experiences Scale (ISLES) evaluates the ability to integrate stressful experiences into one's meaning system. The present study developed and validated a version of this scale for a bereaved Portuguese-speaking population, utilizing a sample of 242 adults who had lost a significant other to diverse causes of death. The sample was predominantly female, educated, married, or in consensual unions, and actively employed. Confirmatory factor analysis revealed a two-factor structure, consisting of 13 items, showing adequate local and global goodness-of-fit and supporting the proposed original structure. Convergent evidence based on internal structure was found for the two dimensions (Comprehensibility and Footing in the World). Regarding reliability, Cronbach's alpha and McDonald's omega computed for each factor showed good internal consistency and the average inter-item correlation was considered satisfactory. This psychometric support for ISLES underscores its relevance in enhancing the knowledge of meaning-making processes in the Portuguese context.

2.
Artículo en Inglés | MEDLINE | ID: mdl-38251813

RESUMEN

This study aimed to explore healthcare professionals' attribution of meaning to the concept of addiction, treatment and recovery. The study was conducted through semi-structured interviews with 18 healthcare professionals in the field of addiction: nine nurses, six psychologists, a psychiatrist, a social worker and a psychosocial technician. Based on a qualitative methodology, a thematic analysis was performed using the NVivo software. Regarding professional stress, the results revealed several stress factors related to the intervention (e.g. strategic powerlessness and uncertainty of intervention's effectiveness), the addicted individuals (e.g. motivation, difficulties in adhering to treatment, patient behaviour, negative patient emotionality and lack of socio-economic resources) as well as the healthcare services (e.g. team stress). Adaptive coping strategies were reported, both used in the work context (e.g. cognitive coping strategies and acceptance) and in personal life (e.g. work-family boundaries and family support and closeness). Despite the professional stress experienced, the participants' narratives indicated positive transformations of the self, which suggests resilient professional trajectories.

3.
Death Stud ; : 1-11, 2023 Oct 26.
Artículo en Inglés | MEDLINE | ID: mdl-37883690

RESUMEN

Grief rumination is characterized by recurring, repetitive, self-focused thoughts about the causes and consequences of loss and loss-related emotions. This cognitive process is a transdiagnostic risk factor for mental disorders, such as prolonged grief. The aim of this study was to analyze the psychometric properties of the Portuguese version of the Utrecht Grief Rumination Scale (UGRS). The sample consists of 242 bereaved adult participants with Portuguese nationality. Confirmatory Factor Analysis showed that the hierarchical model showed a better fit to the data. Average Variance Extracted was also calculated to measure convergent and divergent validity. Test-criterion validity was investigated by analyzing associations between grief rumination and measures of posttraumatic stress, prolonged grief, anxiety, and depression. Using McDonald's Omega and Cronbach's Alpha, all subscales showed adequate reliability. The UGRS showed acceptable psychometric properties, standing out as a valid instrument for practice and research in psychology in the area of ​​bereavement.

4.
Artículo en Inglés | MEDLINE | ID: mdl-35954562

RESUMEN

In the present study, the attributions of socially and economically disadvantaged mothers for their own negative parenting behavior and for their children's undesirable behaviors as perceived by parents-understood as misbehavior-were analyzed. To this end, an exploratory study with a qualitative design was developed, in which 24 socially and economically disadvantaged mothers were individually interviewed. The data were analyzed following a thematic analysis approach, using software suited to qualitative analysis, namely NVIVO 12. The children's undesirable behaviors as perceived by parents and some characteristics associated with parental performance (particularly the appraisal of the effectiveness of their negative practices) emerged respectively as external and internal factors, explaining mothers' inadaptive behaviors-difficulties in behavior regulation, physical coercion, psychological control and paraverbal hostility. The parental subsystem and school emerged as the main external factors, and the psychological characteristics as the most relevant internal factors, explaining the children's undesirable behaviors-challenge, immaturity, hostility, emotionally-based, school behavior/absenteeism and danger. The results also indicate weak self-critical reflexivity regarding some of the inadaptive behaviors. The comprehensive analysis of the results, based on the literature review, gave rise to an explanatory hypothesis on the dysfunctional circular process regarding the maintenance of inadaptive practices and children's undesirable behaviors, considering the role played by parental attributions and by insufficient parental reflexivity.


Asunto(s)
Madres , Responsabilidad Parental , Niño , Femenino , Hostilidad , Humanos , Conducta Materna/psicología , Madres/psicología , Responsabilidad Parental/psicología , Percepción Social
5.
Front Psychol ; 13: 858356, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35693484

RESUMEN

Introduction: History of depression symptoms, including before and during pregnancy, has been identified as an important risk factor for postpartum depression (PPD) symptoms. This condition has also been associated with diverse implications, namely, on the quality of mother-infant bonding. Moreover, the role of self-criticism on PPD has been recently found in several studies. However, the link between these factors has not been explored yet. Furthermore, anxiety symptoms in postpartum has been less studied. Methods: This study analyzed whether the history of depression symptoms predicted mother-infant bonding, via self-criticism and PPD symptoms. The same model was repeated with a history of anxiety and postpartum anxiety symptoms. A total of 550 mothers of infants <24 months old participated in this cross-sectional study and answered an online survey. Results: Through a parallel-serial mediation model, the results show that in a first step, self-criticism dimensions of inadequate-self, hated-self, and reassuring-self, and in a second step, PPD symptoms, mediate the relationship between the history of depression symptoms and mother-infant bonding. However, the relationship between the history of anxiety symptoms and bonding is not mediated by all the considered chain of mediators, being only mediated by one of the self-criticism dimensions, inadequate self. Conclusions: The current study confirmed the association of history of both depression and anxiety with mother-infant bonding. While in the case of history of anxiety symptoms, the relation was only mediated by inadequate self-dimension of self-criticism, in the case of history of depression symptoms, the relation was mediated by self-criticism and postpartum depressive symptoms. The buffering effect of reassuring-self on bonding and negative affect was also evidenced. Psychological and preventive interventions should address this evidence to target interventions for mother-infant bonding problems in accordance with previous and actual current maternal risk factors.

6.
9.
PLoS One ; 15(3): e0229952, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32196508

RESUMEN

Plant molecular farming (PMF) is a convenient and cost-effective way to produce high-value recombinant proteins that can be used in the production of a range of health products, from pharmaceutical therapeutics to cosmetic products. New plant breeding techniques (NPBTs) provide a means to enhance PMF systems more quickly and with greater precision than ever before. However, the feasibility, regulatory standing and social acceptability of both PMF and NPBTs are in question. This paper explores the perceptions of key stakeholders on two European Union (EU) Horizon 2020 programmes-Pharma-Factory and Newcotiana-towards the barriers and facilitators of PMF and NPBTs in Europe. One-on-one qualitative interviews were undertaken with N = 20 individuals involved in one or both of the two projects at 16 institutions in seven countries (Belgium, France, Germany, Italy, Israel, Spain and the UK). The findings indicate that the current EU regulatory environment and the perception of the public towards biotechnology are seen as the main barriers to scaling-up PMF and NPBTs. Competition from existing systems and the lack of plant-specific regulations likewise present challenges for PMF developing beyond its current niche. However, respondents felt that the communication of the benefits and purpose of NPBT PMF could provide a platform for improving the social acceptance of genetic modification. The importance of the media in this process was highlighted. This article also uses the multi-level perspective to explore the ways in which NPBTs are being legitimated by interested parties and the systemic factors that have shaped and are continuing to shape the development of PMF in Europe.


Asunto(s)
Agricultura Molecular , Nicotiana/crecimiento & desarrollo , Fitomejoramiento , Plantas/genética , Biotecnología , Unión Europea , Edición Génica , Ingeniería Genética/tendencias , Humanos , Desarrollo de la Planta/genética , Plantas Modificadas Genéticamente/genética , Plantas Modificadas Genéticamente/crecimiento & desarrollo
10.
Rev. bioét. (Impr.) ; 28(1): 69-75, jan.-mar. 2020. tab
Artículo en Portugués | LILACS | ID: biblio-1092428

RESUMEN

Resumo O objetivo desta pesquisa foi realizar levantamento sobre a frequência das doações de órgãos ou tecidos no Hospital Regional do Agreste, Caruaru/PE. Trata-se de estudo descritivo, retrospectivo, com base nos dados de 439 prontuários que registraram as doações realizadas no hospital entre janeiro de 2011 e dezembro de 2014. As doações oscilaram no período considerado e diminuíram no último ano da série, ficando sempre muito abaixo do número de potenciais doadores. Além disso, a doação de tecido foi muito superior à de órgãos. Os resultados demonstram que é imprescindível criar medidas públicas permanentes para conscientizar a população sobre a importância do tema. Aprovação CEP-Unifavip CAAE 42440515.3.0000.5666


Abstract The goal of this study was to carry out a survey of the frequency of organ or tissue donation in Hospital Regional do Agreste, Caruaru, Pernambuco, Brazil. This is a descriptive, retrospective study, based on data from 439 medical records which documented donations made in the hospital between January 2011 and December 2014. Donations varied over the period in question and decreased in the last year of the series, remaining always well below the number of potential donors. In addition, tissue donation was far superior to organ donation. The results show that it is essential to create permanent public measures to raise awareness of the importance of this subject among the population. Approval CEP-Unifavip CAAE 42440515.3.0000.5666


Resumen El objetivo de esta investigación fue realizar una recolección de datos sobre la frecuencia de las donaciones de órganos o tejidos en el Hospital Regional do Agreste, Caruaru, Pernambuco, Brasil. Este es un estudio descriptivo, retrospectivo, basado en datos de 439 registros médicos que registraron las donaciones realizadas en el hospital entre enero de 2011 y diciembre de 2014. Las donaciones oscilaron en el período considerado y disminuyeron en el último año de la serie, siempre manteniéndose muy por debajo del número de donantes potenciales. Además, la donación de tejidos fue muy superior a la donación de órganos. Los resultados demuestran que es imprescindible crear medidas públicas permanentes para concienciar a la población sobre la importancia del tema. Aprobación CEP-Unifavip CAAE 42440515.3.0000.5666


Asunto(s)
Humanos , Masculino , Femenino , Obtención de Tejidos y Órganos , Muerte Encefálica , Sensibilización Pública , Política de Salud , Traumatismos Craneocerebrales
11.
Palliat Support Care ; 18(2): 199-205, 2020 04.
Artículo en Inglés | MEDLINE | ID: mdl-31559945

RESUMEN

OBJECTIVE: Dignity therapy (DT) is well established in adult populations, and it is likely that it could benefit younger people. This study aimed to adapt the adult Portuguese DT question framework for adolescents (DT-QF-Adol) (ages 10-18). METHOD: Five stages were followed: (1) the Portuguese DT-QF for adults was adapted for adolescents with the original author's collaboration, (2) an expert committee provided feedback on the adapted version, (3) an initial consensus version of the DT-QF-Adol was created, (4) expert committee consult affirmed final consensus, and (5) validation stage with a sample of 17 adolescents followed in ambulatory psychology clinic. RESULTS: DT's original author endorsed the final Portuguese DT-QF-Adol, reinforcing that it captures the fundamental dimensions of DT. There was 100% agreement on the final consensus version and defined age group (10-18 years old). Twenty adolescents were invited to participate, and 17 were included after informed consent was obtained; 53% were female. The average age was 12.7 years. The interviewed adolescents reported that the DT-QF-Adol was clear, and they did not identify any ambiguity or difficulty in answering any of the questions. They assumed that this information could positively affect the way parents and friends see and cared for them, permitting others to understand their concerns and preferences. Participants felt that the DT-QF-Adol could be a good starting point for a conversation with their loved ones. Although they did not consider vital for health professionals to access their answers, they strongly felt that the DT-QF-Adol might be essential to sick adolescents and they would recommend it to others. SIGNIFICANCE OF RESULTS: We developed a DT-QF of nine questions for Portuguese adolescents (DT-QF-Adol), coined Protocolo de Perguntas da Terapia da Dignidade para Adolescentes - 10-18 anos. This tool can potentially be considered a good addition for pediatric palliative care.


Asunto(s)
Conducta del Adolescente/psicología , Psicometría/normas , Respeto , Adolescente , Niño , Femenino , Humanos , Masculino , Cuidados Paliativos/métodos , Psicometría/instrumentación , Psicometría/métodos , Encuestas y Cuestionarios , Traducción
12.
Glob Health Action ; 11(1): 1417522, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29334324

RESUMEN

BACKGROUND: Low retention of humanitarian workers poses constraints on humanitarian organisations' capacity to respond effectively to disasters. Research has focused on reasons for humanitarian workers leaving the sector, but little is known about the factors that can elucidate long-term commitment. OBJECTIVE: To understand what motivates and supports experienced humanitarian health workers to remain in the sector. METHODS: Semi-structured interviews were conducted with 10 experienced nurses who had been on at least three field missions with Médecins Sans Frontières Sweden. Interviews explored factors influencing the decision to go on missions, how nurses were supported and how they looked back on those experiences. Transcripts were analysed through content analysis informed by van Gennep's concept of 'Rite of Passage', combined with elements of the self-determination theory. RESULTS: The findings indicate that their motivations and how nurses thought of themselves, as individuals and professionals, changed over time. For initiation and continued engagement in humanitarian work, participants were motivated by several personal and professional ambitions, as well as altruistic principles of helping others. When starting their first humanitarian missions, nurses felt vulnerable and had low self-esteem. However, through experiencing feelings of autonomy, competence and relatedness during missions, they underwent a process of change and gradually adjusted to new roles as humanitarian health workers. Reintegration in their home community, while maintaining the new roles and skills from the missions, proved very challenging. They individually found their own ways of overcoming the lack of social support they experienced after missions in order to sustain their continuation in the sector. CONCLUSIONS: The findings highlight the importance of social environments that facilitate and support the adjustment of individuals during and after field missions. Learning from positive examples, such as nurses with several years of experience, can strengthen strategies of retention, which can ultimately improve the delivery of humanitarian assistance.


Asunto(s)
Altruismo , Enfermeras y Enfermeros/psicología , Adulto , Competencia Clínica , Desastres , Femenino , Humanos , Entrevistas como Asunto , Persona de Mediana Edad , Motivación , Autonomía Personal , Selección de Personal , Medio Social , Apoyo Social , Suecia
13.
Anxiety Stress Coping ; 31(1): 93-106, 2018 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-28783971

RESUMEN

BACKGROUND AND OBJECTIVES: This study aimed to examine forms of dyadic coping (DC) as mediators of the association between parents' grief response and dyadic adjustment and to determine whether these indirect effects were moderated by the child's type of death, timing of death, and age. DESIGN: The study design was cross-sectional. METHOD: The sample consisted of 197 bereaved parents. Participants completed the Prolonged Grief Disorder Scale, Revised Dyadic Adjustment Scale, and Dyadic Coping Inventory. RESULTS: Significant indirect effects of parents' grief response on dyadic adjustment were found through stress communication by oneself and by the partner, positive and negative DC by the partner, and joint DC. The timing of death moderated the association between grief response and dyadic adjustment and between joint DC and dyadic adjustment. Grief response was negatively associated with dyadic adjustment only when the death occurred after birth. Grief response was negatively associated with joint DC, which, in turn, was positively associated with dyadic adjustment, when the death occurred both before and after birth. However, the association was stronger in the latter. CONCLUSIONS: Specific forms of DC might be mechanisms through which grief response is associated with dyadic adjustment and should be promoted in clinical practice.


Asunto(s)
Adaptación Psicológica , Actitud Frente a la Muerte , Pesar , Padres/psicología , Adolescente , Adulto , Anciano , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven
14.
Psychol Trauma ; 10(2): 199-207, 2018 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-28682106

RESUMEN

OBJECTIVE: Although the death of a child is a devastating event, recent evidence shows that personal growth is a relevant outcome of parents' grief. This study aimed to examine the factors associated with posttraumatic growth (PTG) and to propose a multidimensional model consisting of sociodemographic, situational, and intrapersonal and interpersonal factors. METHOD: A sample (N = 197; 89.8% female; mean age = 39.44 years) of bereaved parents completed the Post-Traumatic Growth Inventory-Short Form, the 14-Item Resilience Scale, the Continuing Bonds Scale, and the Dyadic Coping Inventory. RESULTS: The final model consisted of sociodemographic, situational, intrapersonal, and interpersonal factors of PTG, which accounted for 36.7% of the variance. Higher levels of PTG were generally associated with female sex, younger age of the child, higher levels of resilience, higher levels of internalized continuing bonds (i.e., internal representation of the child, maintaining psychological proximity), and higher levels of stress communication by the partner (communicating the stress experience and requesting emotional or practical support). CONCLUSIONS: In clinical practice, health professionals assisting bereaved parents should pay attention to men and parents of older children, who might be at higher risk of difficulties in developing PTG. Additionally, promoting a more internalized bond with the child, resilience and dyadic coping, especially stress communication, can constitute important therapeutic goals. (PsycINFO Database Record


Asunto(s)
Aflicción , Padres/psicología , Crecimiento Psicológico Postraumático , Adolescente , Adulto , Anciano , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Modelos Psicológicos , Adulto Joven
15.
Biodivers Data J ; (5): e19893, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-29104435

RESUMEN

The Natural History Museum, London (NHMUK) has embarked on an ambitious programme to digitise its collections. The first phase of this programme was to undertake a series of pilot projects to develop the workflows and infrastructure needed to support mass digitisation of very large scientific collections. This paper presents the results of one of the pilot projects - iCollections. This project digitised all the lepidopteran specimens usually considered as butterflies, 181,545 specimens representing 89 species from the British Isles and Ireland. The data digitised includes, species name, georeferenced location, collector and collection date - the what, where, who and when of specimen data. In addition, a digital image of each specimen was taken. A previous paper explained the way the data were obtained and the background to the collections that made up the project. The present paper describes the technical, logistical, and economic aspects of managing the project.

16.
Biodivers Data J ; (5): e21277, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-29104442

RESUMEN

The Natural History Museum, London (NHMUK) has embarked on an ambitious programme to digitise its collections. The first phase of this programme was to undertake a series of pilot projects to develop the workflows and infrastructure needed to support mass digitisation of very large scientific collections. This paper presents the results of one of the pilot projects - iCollections. This project digitised all the lepidopteran specimens usually considered as butterflies, 181,545 specimens representing 89 species from the British Isles and Ireland. The data digitised includes, species name, georeferenced location, collector and collection date - the what, where, who and when of specimen data. In addition, a digital image of each specimen was taken. A previous paper explained the way the data were obtained and the background to the collections that made up the project. The present paper describes the technical, logistical, and economic aspects of managing the project.

17.
PLoS One ; 12(6): e0178861, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28570628

RESUMEN

The present study aimed to examine whether bereaved parents "meaning-made"-defined as results of attempts to reduce discrepancies between the meaning assigned to the death of the child and self and world-views-was influenced by their own and their partner's coping orientations. Coping orientations were conceptualized within the Dual Process Model, which entails loss coping orientation (LO; focus on the loss itself), restoration coping orientations (RO; focus on stressors that come about as an indirect consequence of the bereavement), and a flexible oscillation between both coping orientations. The sample consisted of 227 couples identified through obituary notices in local and national newspapers, who provided data at 6, 13, and 20 months after the death of their child. At all three points of measurement, both partners independently completed the Dual Coping Inventory (DCI) and a scale developed by the authors about meaning-made from the loss. Data were analyzed using a multi-level Actor-Partner Interdependence Model. Results show that the combination of parents' own LO and RO (operationalized through the interaction effect between LO and RO) have a positive effect in parents' meaning-made. Partners' LO have a negative effect in parents' meaning-made. These results highlight the importance of, in the context of parental bereavement, being flexible by using both coping orientations, and of acknowledging the interdependence between partners, namely, the interpersonal process by which partner's coping affect one's meaning-made.


Asunto(s)
Adaptación Psicológica , Aflicción , Padres/psicología , Niño , Femenino , Humanos , Masculino
18.
Biodivers Data J ; (4): e9559, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-27932915

RESUMEN

BACKGROUND: The Natural History Museum, London (NHMUK) has embarked on an ambitious programme to digitise its collections . The first phase of this programme has been to undertake a series of pilot projects that will develop the necessary workflows and infrastructure development needed to support mass digitisation of very large scientific collections. This paper presents the results of one of the pilot projects - iCollections. This project digitised all the lepidopteran specimens usually considered as butterflies, 181,545 specimens representing 89 species from the British Isles and Ireland. The data digitised includes, species name, georeferenced location, collector and collection date - the what, where, who and when of specimen data. In addition, a digital image of each specimen was taken. This paper explains the way the data were obtained and the background to the collections which made up the project. NEW INFORMATION: Specimen-level data associated with British and Irish butterfly specimens have not been available before and the iCollections project has released this valuable resource through the NHM data portal.

19.
PLoS One ; 10(8): e0135152, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-26252495

RESUMEN

Plants provide fundamental support systems for life on Earth and are the basis for all terrestrial ecosystems; a decline in plant diversity will be detrimental to all other groups of organisms including humans. Decline in plant diversity has been hard to quantify, due to the huge numbers of known and yet to be discovered species and the lack of an adequate baseline assessment of extinction risk against which to track changes. The biodiversity of many remote parts of the world remains poorly known, and the rate of new assessments of extinction risk for individual plant species approximates the rate at which new plant species are described. Thus the question 'How threatened are plants?' is still very difficult to answer accurately. While completing assessments for each species of plant remains a distant prospect, by assessing a randomly selected sample of species the Sampled Red List Index for Plants gives, for the first time, an accurate view of how threatened plants are across the world. It represents the first key phase of ongoing efforts to monitor the status of the world's plants. More than 20% of plant species assessed are threatened with extinction, and the habitat with the most threatened species is overwhelmingly tropical rain forest, where the greatest threat to plants is anthropogenic habitat conversion, for arable and livestock agriculture, and harvesting of natural resources. Gymnosperms (e.g. conifers and cycads) are the most threatened group, while a third of plant species included in this study have yet to receive an assessment or are so poorly known that we cannot yet ascertain whether they are threatened or not. This study provides a baseline assessment from which trends in the status of plant biodiversity can be measured and periodically reassessed.


Asunto(s)
Biodiversidad , Conservación de los Recursos Naturales , Especies en Peligro de Extinción , Viridiplantae/clasificación , Bases de Datos Factuales , Ecosistema , Extinción Biológica , Geografía , Bosque Lluvioso , Clima Tropical
20.
Arch. Clin. Psychiatry (Impr.) ; 39(4): 136-141, 2012. tab
Artículo en Portugués | LILACS | ID: lil-646412

RESUMEN

INTRODUÇÃO: A ocorrência de diagnóstico pré ou pós-natal de anomalia congênita (AC) num filho pode implicar mudanças na dinâmica e no funcionamento da família, bem como ter um importante impacto no ajustamento individual dos pais. OBJETIVOS: Este estudo teve como objetivos avaliar a sobrecarga parental e ajustamento individual de pais de crianças com diagnóstico de AC e compreender a variabilidade da adaptação dos pais (sobrecarga e ajustamento individual) em função dos determinantes da criança. MÉTODOS: A amostra foi constituída por 124 participantes (62 casais), pais de crianças com diagnóstico de AC. O protocolo de avaliação incluiu a Escala de Impacto Familiar, o Brief Symptom Inventory e o Instrumento de Avaliação de Qualidade de Vida da Organização Mundial de Saúde (WHOQOL-Bref). RESULTADOS: As mães reportaram maiores níveis de sintomatologia psicopatológica e menor percepção de qualidade de vida. Encontraram-se, ainda, efeitos significativos dos determinantes da criança, nomeadamente da idade da criança no ajustamento paterno e da percepção de gravidade da anomalia no ajustamento paterno e na sobrecarga materna. O conhecimento do diagnóstico após o nascimento e as anomalias cromossômicas mostraram-se, em ambos os pais, correlacionados com maior percepção de sobrecarga global e financeira. CONCLUSÃO: Os resultados salientam a complexidade do ajustamento dos pais ao diagnóstico de anomalia congênita de um filho, na qual interagem diversos fatores, em particular os associados com o diagnóstico da criança.


BACKGROUND: The occurrence of a pre- or postnatal diagnosis of a congenital anomaly may imply changes in the family dynamics and functioning, and may have an important impact on the parents' individual adjustment. OBJECTIVES: This study aimed to assess the perceived burden and individual adjustment of parents whose child has a congenital anomaly, and to examine the variability of parental adaptation (burden and individual adjustment) as a function of the child's characteristics. METHODS: The sample comprised 124 parents (62 couples), whose child has a congenital anomaly. The assessment protocol included the Impact on Family Scale, the Brief Symptom Inventory, and the World Health Organization quality of life instrument (WHOQOL-Bref). RESULTS: Mothers reported higher scores on psychopathological symptoms and lower scores on quality of life than fathers. A significant effect of child's age in the paternal adaptation was found; the perception of the severity of the anomaly was significantly associated with paternal adjustment and with maternal burden. In both parents, the timing of diagnosis and the type of congenital anomaly were significantly correlated with global and financial burden. DISCUSSION: These findings support the complexity of the parents' adaptation when parenting a child with a congenital anomaly, in which several factors interact, particularly those associated with the child's diagnosis.


Asunto(s)
Humanos , Masculino , Femenino , Adulto , Anomalías Congénitas , Adaptación Psicológica , Perfil de Impacto de Enfermedad , Salud Infantil
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