A psychological experience assessment protocol of parent caregivers in paediatric palliative care.

Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.

Comparative effectiveness of ZUMA-5 (axi-cel) vs SCHOLAR-5 external control in relapsed/refractory follicular lymphoma.

In the pivotal ZUMA-5 trial, axicabtagene ciloleucel (axi-cel; an autologous anti-CD19 chimeric antigen receptor T-cell therapy) demonstrated high rates of durable response in relapsed/refractory (r/r) follicular lymphoma (FL) patients. Here, outcomes from ZUMA-5 are compared with the international SCHOLAR-5 cohort, which applied key ZUMA-5 trial eligibility criteria simulating randomized controlled trial conditions. SCHOLAR-5 data were extracted from institutions in 5 countries, and from 1 historical clinical trial, for r/r FL patients who initiated a third or higher line of therapy after July 2014. Patient characteristics were balanced through propensity scoring on prespecified prognostic factors using standardized mortality ratio (SMR) weighting. Time-to-event outcomes were evaluated using weighted Kaplan-Meier analysis. Overall response rate (ORR) and complete response (CR) rate were compared using weighted odds ratios. The 143 ScHOLAR-5 patients reduced to an effective sample of 85 patients after SMR weighting vs 86 patients in ZUMA-5. Median follow-up time was 25.4 and 23.3 months for SCHOLAR-5 and ZUMA-5. Median overall survival (OS) and progression-free survival (PFS) in SCHOLAR-5 were 59.8 months and 12.7 months and not reached in ZUMA-5. Hazard ratios for OS and PFS were 0.42 (95% confidence interval [CI], 0.21-0.83) and 0.30 (95% CI, 0.18-0.49). The ORR and CR rate were 49.9% and 29.9% in SCHOLAR-5 and 94.2% and 79.1% in ZUMA-5, for odds ratios of 16.2 (95% CI, 5.6-46.9) and 8.9 (95% CI, 4.3-18.3). Compared with available therapies, axi-cel demonstrated an improvement in meaningful clinical endpoints, suggesting axi-cel addresses an important unmet need for r/r FL patients. This trial was registered at www.clinicaltrials.gov as #NCT03105336.

Daily Life, Communication and Affections of Siblings and Parents of Military Service Members in Mission / Cotidiano, Comunicação e Afetos dos Irmãos e Progenitores dos Militares em Missão / Rutina, Comunicación y Afectos de los Hermanos y Padres de los Militares en Misión

Abstract The Portuguese military in mission state that parents and siblings are a fundamental support; however, research is very scarce in this area. This study aimed to investigate the impact of a mission on the daily life, communication and emotional responses of 227 relatives of 92 military personnel, 114 siblings (M age = 29.14, SD = 9.81) e 113 parents (M age = 55.06, SD = 9.12). A questionnaire related to the mission was applied, focusing on changes in the daily life, social support, communication and advice to other family members; and the Positive and Negative Affect Schedule since receiving notification. The results revealed that the parents suffered more with the notification and that there were changes in family functioning and in the functional support. Communication with the deployed military service member strengthens family relationships, morale, and well-being. Participants reported emotions of concern and pride, and gave advice based on a positive attitude toward the military and the mission.

Resumo Os militares portugueses em missão costumam mencionar que pais e irmãos são um apoio fundamental, contudo a investigação é muito escassa nesta área. Este estudo teve como objetivo investigar o impacto de uma missão no cotidiano, comunicação e nas respostas emocionais de 227 familiares de 92 militares, 114 irmãos (M idade = 29.14, DP = 9.81) e 113 progenitores (M idade = 55.06, DP = 9.12). Aplicou-se um questionário relativo à missão, focando alterações do cotidiano, suporte social, comunicação e conselhos a outros familiares; e a Escala de Afetos Positivos e Negativos perante a notificação da mesma. Os resultados revelaram que os progenitores sofreram mais com a notificação e que existiram alterações no funcionamento familiar e no suporte funcional. A comunicação com o militar destacado fortalece as relações familiares, a moral e o bem-estar. Os participantes destacaram as emoções de preocupação e orgulho assim como conselhos pautados por uma atitude positiva face aos militares e à missão.

Resumen Los militares portugueses en misión mencionan que los padres y hermanos son un apoyo fundamental, pero la investigación es muy escasa en esta área. Este estudio tuvo como objetivo investigar el impacto de una misión en la vida cotidiana, la comunicación y las respuestas emocionales de 227 familiares de 92 militares, 114 hermanos (M edad = 29.14 SD = 9.81) y 113 padres (M edad = 55.06, SD = 9.12). Se aplicó un cuestionario de misión, centrado en los cambios diarios, el apoyo social, la comunicación y el asesoramiento a otros miembros de la familia; y la Escala de Afectos Positivos y Negativos tras la notificación. Los resultados revelaron que los padres sufrieron más con la notificación y que hubo cambios en el funcionamiento familiar y el apoyo funcional. La comunicación con el militar separado fortalece las relaciones familiares, la moral y el bienestar. Los participantes destacaron emociones de preocupación y orgullo, así como consejos basados en una actitud positiva hacia los militares y la misión.

Adaptação portuguesa do questionário de coparentalidade: análise fatorial confirmatória e estudos de validade e fiabilidade / Portuguese adaptation of the coparenting questionnaire: confirmatory factor analysis, validity and reliability

Este estudo teve como objetivo adaptar e avaliar as propriedades psicométricas, a validade e a fiabilidade da versão portuguesa do Coparenting Questionnaire (Margolin, Gordis, & John, 2001). O Coparenting Questionnaire é composto por 14 itens organizados em três subescalas: Cooperação, Triangulação e Conflito. O estudo foi realizado com uma amostra de 1133 indivíduos (530 pais e 603 mães), com filhos pré-adolescentes. A validade fatorial foi testada através da análise fatorial confirmatória. Os resultados replicam a estrutura da versão original composta por três fatores: Cooperação, Triangulação e Conflito. Os valores dos índices de ajustamento revelam uma boa qualidade de ajustamento do modelo aos dados, para pais (CFI = 0,94, RMSEA = 0,06, SRMR = 0,05) e mães (CFI = 0,96, RMSEA = 0,06, SRMR = 0,05). A escala apresenta coeficientes de consistência interna entre o aceitável e o elevado (0,71 < α < 0,88), bem como valores adequados de validade convergente e discriminante. Os resultados suportam a validade do construto de coparentalidade e sugerem a versão portuguesa do Coparenting Questionnaire como uma medida válida do construto.

The purpose of this study was to adapt and examine the psychometric properties, validity and reliability of the Portuguese version of the Coparenting Questionnaire (Margolin, Gordis, & John, 2001). The Coparenting Questionnaire includes 14 itens organized in 3 subscales: Cooperation, Triangulation and Conflict. Data were collected from 1,133 participants (530 fathers and 603 mothers) with preadolescent children. Factorial validity was tested through confirmatory factor analysis. The results replicated the original three-factor structure: Cooperation, Triangulation and Conflict. Confirmatory factor analysis indicated a good fit of the model for fathers (CFI = .94, RMSEA = .06, SRMR = .05) and for mothers (CFI = .96, RMSEA = .06, SRMR = .05). The instrument presents Cronbach's alpha coefficients between acceptable and good (.71 < α < .88) as well as adequate values for the convergent and discriminant validity. These results support the validity of the coparenting construct and the Portuguese version of the Coparenting Questionnaire as a valid measure.

Conflitos e riscos socioambientais: análise da relaçäo entre o complexo Costa do Sauípe e atores locais / Socioenvironmental conflicts and risks: analysis of the relationship between the Costa do Sauípe complex and local actors

Analisa o processo de construçäo de mecanismos político-institucionais de coordenaçäo a partir do estudo de conflitos socioambientais existentes entre o complexo turístico-hoteleiro Costa do Sauípe - localizado na área de proteçäo ambiental do litoral norte da Bahia (APA LN-BA) - e atores locais. Parte da investigaçäo de situaçöes-problema envolvendo riscos socioambientais. Busca contribuir para a discussäo e compreensäo dos desafios envolvidos na construçäo da sustentabilidade dessa área de proteçäo ambiental e subsidiar a formulaçäo de políticas de intervençäo dos diversos atores envolvidos com a questäo.