The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care.

In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents' own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents' contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.

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.

"I'm Afraid If This Goes Wrong What Will Become of Me?": The Psychological Experience of Grandparents in Pediatric Palliative Care.

Portugal has been identified as the European country with the most rapid evolution of Pediatric Palliative Care provision, where approximately 7800 children have life-limiting conditions. This is a highly complex experience not only for the children and their parental caregivers, but also for their healthy siblings and grandparents. The present descriptive-exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in grandparents. A total of 19 families, consisting of 15 grandmothers and 4 grandfathers, completed a sociodemographic and clinical data sheet and a semi-structured interview was conducted in which they shared their testimony. The results of the thematic analysis highlighted an integrated view on 10 important dimensions in the grandparental experience and promoted creative responses by means of their own perspective. However, it has some limitations, such as the small sample size and the data collection procedure via telephone. The results contribute to the design of specific intervention methodologies in an ecosystemic approach and suggest further research to explore more protective factors and communication with health professionals. For psychological intervention, it is suggested considering the identification of individual and family resources that contribute to the activation of key processes in resilience and posttraumatic growth.

"The Key Is to Value Every Little Achievement": A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care.

In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive-exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in parent caregivers. A total of 14 families completed a sociodemographic and clinical data sheet and answered a structured online interview based on an incomplete narrative resulting from the Unwanted Guest Metaphor. A thematic analysis of the various narratives was performed through an inductive-deductive process. The results provide a holistic view of 10 essential dimensions in the parental psychological experience and contribute to the design of intervention methodologies in an eco-systemic approach. The importance of clear communication with health professionals, an awareness of the unpredictability of the disease, the desire for more self-care, the difficulty in understanding their children's needs and the threat implicit in everyday life are some of the main findings. This research emphasizes the importance of having opportunities of emotional expression and psychoeducation about anxiety' management, enhancing the perception of positive characteristics in children with palliative needs and creating time for the couple. The study has some limitations, such as the small sample size, and suggests that further research should explore the father's experience.

The work-family interface and the COVID-19 pandemic: A systematic review.

In an unprecedented fashion, COVID-19 has impacted the work-family interface since March 2020. As one of the COVID-19 pandemic consequences, remote work became widely adopted. Furthermore, it is expected that other pandemics will occur in the future. Hence, this context represents a chance to gain deeper insight into telecommuters' work and family spheres. Following PRISMA guidelines, the present narrative review aims to synthesise the COVID-19 impact on the work-family interface. Out of 121 screened references, 32 articles that measure at least one of the following variables-work-family conflict (25), work-family enrichment (3), work-family balance (8), and boundary management (21) were included. A thematic analysis using NVIVO12 was conducted, from which eight topics emerged: "paid workload, unpaid workload, and gender"; "well-being and gender"; "job resources, job demands, and gender"; "couples and gender"; "parenting and gender"; "occurrence of work-family enrichment with work-family conflict and gender"; "enforced blurred boundaries, its management, and gender"; "boundary management impact on work-family conflict, work-family enrichment, and work-family balance." Overall, studies point out that COVID-19 had a complex effect on both work-family conflict and work-family balance, making it difficult to state whether these variables were mitigated or augmented. Findings demonstrated that COVID-19 produced little changes in work-family enrichment. As for the COVID-19 impact on work-family boundary management, individuals had to create new tactics to manage them due to the absence of boundaries between both systems. Besides, due to traditional gendered roles, the COVID-19 health crisis seems to have brought additional hurdles to couples and women. Systematic Review Registration: [https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021278254], identifier [CRD42021278254].

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.

Connor-Davidson Resilience Scale: validation study in a Portuguese sample.

OBJECTIVE: The objective of this paper was to evaluate the structural validity and convergent validity of the first Portuguese version of the Connor-Davidson Resilience Scale (CD-RISC). SETTINGS: The data sets come from two studies conducted in Portugal, respectively, from the Resilience Effect in Coping with Trauma (RECT) project and from the Health Impact Assessment of Employment Strategies (HIAES) project. PARTICIPANTS: The sample is composed of 476 participants from the RECT project and 405 participants from the HIAES project. In both projects, convenience samples were used. MEASURES: The original CD-RISC items were translated to Portuguese and were used in a survey along with additional psychosocial and biomedical measures. RESULTS: Independent exploratory factorial analysis (EFA) with each of the two samples revealed that the best solution in both samples had three factors consistent with the self-efficacy, spirituality and social support factors from the original scale. A Confirmatory factor analysis using the two samples together and specifying the three factors from the EFA revealed a good overall fit and, comparatively, better fit than a model specified with the five factors from the original scale. The study of the convergent validity revealed that bivariate correlations between the three factors and validated measures of stress, life satisfaction, mental health and physical health are globally consistent with previous research. CONCLUSIONS: This study makes available to the broad Community of Portuguese Language Countries a validated measure of resilience extensively used for research and intervention. The results encourage future studies using this translated version of CD-RISC to explore further the three-factor structure found here and to test the convergent validity with new samples.

Social and community program approaches to participants: Exploring best practices.

This article presents the results of a deepened study of the best practices and outcomes of 15 programs (across 9 countries) that work with socioeconomically disadvantagedd communities. Using thematic analysis, we identified best practices that participants, community leaders, and professionals recognized as key. Data collection involved in loco observation and semistructured interviews with participants and professionals, and focus groups with professionals. Associated with best practices, programs adopted two central perspectives on approaching participants: approaching participants as users and approaching participants as contributors. Such approaches were crossed with best practices and outcomes identified througout the analysis. For programs that approached participants as users, the best practices were valuing, facilitating the access to resources, showing availability, and promoting competencies and openness, and the main outcome was participants' improved self-confidence. For programs that approached participants as contributors, the best practices were contributing, encouraging participation, valuing participants, becoming masters, and reciprocity, and the main outcome was participants having an impact.

The Predictive Value of Dyadic Coping in the Explanation of PTSD Symptoms and Subjective Well-Being of Work Accident Victims.

Objective: Work accidents may be considered dyadic stressors in so far as they not only affect the worker, but also the couple's relationship. Dyadic coping, as the process by which couples manage the stress experienced by each partner, can strengthen individual health and well-being as well as couple relationship functioning. Accidents at work have progressively been studied from a perspective that focuses on their negative effects on PTSS, anxiety, and depression. However, to a large extent, the dyadic coping processes and results following a work accident are still to be identified and clarified. In this study, we examined the predictive value of dyadic coping in the explanation of PTSS and subjective well-being of work accident victims. Method: This study comprised a sample of 62 individuals involved in work accidents within the last 24 months (61.3% males) and their partners (N = 124; M = 46.25 years, SD = 11.18). All participants responded to the Dyadic Coping Inventory and the work accident victims also answered the PTSD Checklist - Civilian (PCL-C) and the Mental Health Continuum - Short Form (MHC-SF). Two hierarchical multiple regression analyses were performed using two different variable set models: Model 1 comprised the control variables gender and age, and Model 2 included the workers' and the partners' dyadic coping variables. Results: Results showed that dyadic coping reported by both workers and their respective partners (Model 2) was a significant predictor of workers' PTSS (p < 0.01) and subjective well-being (p < 0.001), explaining 31.2% of the variance in PCL-C and 68.7% in MHC-SF results. More specifically, the partners' supportive dyadic coping (by the self) and delegated dyadic coping (by the partner) were significant predictors of the workers' lower PTSS and virtually all the dyadic copying strategies of both the workers' and their partners' were significant predictors of the workers' higher subjective well-being. Conclusion: Dyadic coping of both the workers and their partners predicts the workers' PTSS and subjective well-being. These findings point to the need to work with couples who have experienced a work accident, with a view to improving the workers' mental health outcomes.

Trajectories on the path to reciprocity-A theoretical framework for collaborating with socioeconomically disadvantaged communities.

The importance of cultivating connection to enhance individual, relational and collective well-being is gaining attention in the current literature on building community. Although these goals are being increasingly considered, the concept of reciprocity has been less prominent than may be warranted in the field of psychology. This article presents a theoretical framework on the dynamics of reciprocity which resulted from grounded theory (GT) research involving 2 complementary studies. The first study involved 22 participants from different socioeconomic backgrounds engaged in "reflecting-team with appreciative audiences" sessions (Madsen, 2007) in Portugal. The second study involved participant observation of 15 community programs recognized as good-practices in collaboration with socioeconomically disadvantaged participants, at national and international levels, across 9 countries. The theoretical framework emphasizes the centrality of building reciprocity for the development of individuals, families, communities, and programs. It integrates the trajectories of reciprocity; quadrants reflecting the standpoints assumed according to socioeconomic and cultural positions; basic social-psychological processes inherent to the process of building reciprocity; and characterizes different types of programs. The resulting framework is analyzed in relation to prior literature for a broader understanding of synergies and challenges, and the article concludes by suggesting implications for further research and practice. (PsycINFO Database Record

Commitment in different relationships statuses: validation study of the personal commitment scale.

This study presents the validation process of the Portuguese version of the short-form Dedication Scale (Rhoades, Stanley, & Markman, 2006; Stanley, 1986), with a sample of 924 participants in different relationship statutes. With 14 items, this short version is recommended by the authors for its simple use, when wanting to measure commitment in romantic relationships. Confirmatory factor analysis showed that the instrument did not have a totally acceptable fit with the data so an exploratory factor analysis was conducted. This revealed a one-dimensional structure of the scale, and led to the exclusion of two items, which relate to a distinct meta-commitment dimension. In sum, the Portuguese version (ECP - Personal Commitment Scale) has 12 items, with good internal consistency (α = .82), correlations item-total between .36 and .60, and good criteria validity (p < .001). Its use for research is therefore appropriate. In a second study, significant differences were found between the participants' four relationship statuses (dating non-cohabiting and cohabiting relationships, formal unions and marriage) (p < .001; η2 p = .03). Results showed that married participants were more committed than those in a formal union, even when controlling for several relational and socio-demographic variables. No differences were found between cohabiting and non-cohabiting dating participants. Men reported higher levels of commitment than women (p < .001; η2 p = .02). Implications and suggestions for future research are discussed.

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.

School Social Behavior Scales: an adaptation study of the Portuguese version of the social competence scale from SSBS-2.

This study analyses the psychometric proprieties of a Portuguese version of the social competence scale from the School Social Behavior Scales (SSBS-2, Merrell, 2002). It is a rating instrument of children and adolescents behavior, to be used by teachers and other school personnel. This scale includes 3 subscales: self-management/compliance, peer relations and academic behavior. In our first sample, 175 teachers rated 344 students from grade 1 through 12. On the second sample 13 teachers rated 251 3rd and 4th grades students. The results from the Portuguese adaptation support the multidimensional structure of the social competence scale from the SSBS-2, although an alternative model demonstrated a better fit to the data than the model originally proposed by the author. The scale showed good internal consistency and good intercorrelations between subscales, as well as between subscales and the total scale. The final model was well replicated in the second sample. These results encourage us to pursue the SSBS-2 Portuguese adaptation, in order to provide a useful and validated instrument for the assessment of social competence and for educational interventions.

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.