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OBJECTIVES: To evaluate an enrichment training program targeted at home palliative care professionals in terms of its effects and participants' satisfaction. The program had 2 main aims: give voice to professionals' emotional fatigue and promote their personal resources. METHODS: One hundred twenty-three home palliative care professionals participated in 12 parallel training courses; each course consisted of four 3-hour meetings led by 2 trainers and involved about 10-15 participants. The program adopted the method and tools typical of the enrichment approach, with the insertion of an art therapy exercise in the central meetings. The topics addressed were the following: emotional awareness in care relationship; the recognition of the needs of the patient, the family, and the professional himself; the inevitability of the death of the patient; and the challenges and resources of the multidisciplinary care team. At the first (T1) and last (T2) meetings, participants filled in a self-report questionnaire assessing work emotional fatigue, empowerment, generativity, and satisfaction with the course. RESULTS: Participants were highly satisfied with the course. They reported a higher level of work emotional fatigue and a higher perception of personal resources, in terms of empowerment (both individual-oriented and relationship-oriented) and generativity at the end of the program than before. SIGNIFICANCE OF RESULTS: Results confirm the need to provide home palliative care professionals with trainings in which they can express, share, and deal with personal and professional needs. This course gave voice to professionals' work emotional fatigue and promoted their personal resources, while enhancing collaboration in the multidisciplinary team.
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Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Satisfacción PersonalRESUMEN
The literature assumes that activating patients in the treatment is associated with positive health-related outcomes, such as clinical indicators in the normal range, high medication adherence, and low emergency department utilization. In the cardiac population, patient activation, that is the patient's knowledge, skills, confidence, and behaviors needed for managing one's own health and health care, has been less investigated. In addition, limited attention has been given to the role of the partner as an informal caregiver. However, the patient in the care process is rarely alone, and the partner may play a key role in this process. The goal of this dyadic study (N = 100 heterosexual couples with one partner suffering from an acute cardiac event) is to analyze how individual factors (patients' anxiety, depression, medication adherence, pessimistic perception of illness) and the couple's relationship functioning (e.g., different kinds of partner support and dyadic coping) are associated with patient activation. The results showed that patient activation is not a mere question of age. It is positively related to medication adherence and to the partner's support patient activation. It is negatively correlated with the patient's psychological distress, pessimistic perception of illness, and to the partner's hostility. The need for a dyadic approach to both research and intervention with this population is discussed.
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Cuidadores/psicología , Conocimientos, Actitudes y Práctica en Salud , Cardiopatías/psicología , Cumplimiento de la Medicación/psicología , Participación del Paciente/psicología , Parejas Sexuales/psicología , Adaptación Psicológica , Cuidadores/estadística & datos numéricos , Femenino , Humanos , Masculino , Cumplimiento de la Medicación/estadística & datos numéricos , Persona de Mediana Edad , Participación del Paciente/métodosRESUMEN
Olfaction plays an important role in human social communication, including multiple domains in which people often rely on their sense of smell in the social context. The importance of the sense of smell and its role can however vary inter-individually and culturally. Despite the growing body of literature on differences in olfactory performance or hedonic preferences across the globe, the aspects of a given culture as well as culturally universal individual differences affecting odor awareness in human social life remain unknown. Here, we conducted a large-scale analysis of data collected from 10 794 participants from 52 study sites from 44 countries all over the world. The aim of our research was to explore the potential individual and country-level correlates of odor awareness in the social context. The results show that the individual characteristics were more strongly related than country-level factors to self-reported odor awareness in different social contexts. A model including individual-level predictors (gender, age, material situation, education, and preferred social distance) provided a relatively good fit to the data, but adding country-level predictors (Human Development Index, population density, and average temperature) did not improve model parameters. Although there were some cross-cultural differences in social odor awareness, the main differentiating role was played by the individual differences. This suggests that people living in different cultures and different climate conditions may still share some similar patterns of odor awareness if they share other individual-level characteristics.
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Percepción Olfatoria/fisiología , Olfato/fisiología , Conducta Social , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Metacognición/fisiología , Persona de Mediana Edad , Modelos Teóricos , Odorantes , Normas Sociales , Encuestas y Cuestionarios , Adulto JovenRESUMEN
A few studies examine patients' (and partners') individual and relational functioning after an acute cardiac event and no research focuses on the individual and relational factors associated with the patient's engagement in his/her disease management. The present study aimed at exploring these variables in male and female patients as well as their partners. We pursued our objectives by taking advantage of a dyadic research design that involved both partners in the data collection, when present, and by including women patients in the sample. Findings showed that patients in a couple, compared to single patients, perceive that their illness had less serious consequences for their life and they were more engaged in their health care; that patients and partners showed comparable levels of distress; and that less depressed, more confident, and better informed patients were more likely to actively engage in their treatment. Findings are discussed in light of their implications for clinical practice.
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Cardiopatías/psicología , Relaciones Interpersonales , Aceptación de la Atención de Salud/psicología , Pacientes/psicología , Esposos/psicología , Anciano , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
The outcome of patients with anaplastic gliomas varies considerably. Whether a molecular classification of anaplastic gliomas based on large-scale genomic or epigenomic analyses is superior to histopathology for reflecting distinct biological groups, predicting outcomes and guiding therapy decisions has yet to be determined. Epigenome-wide DNA methylation analysis, using a platform which also allows the detection of copy-number aberrations, was performed in a cohort of 228 patients with anaplastic gliomas (astrocytomas, oligoastrocytomas, and oligodendrogliomas), including 115 patients of the NOA-04 trial. We further compared these tumors with a group of 55 glioblastomas. Unsupervised clustering of DNA methylation patterns revealed two main groups correlated with IDH status: CpG island methylator phenotype (CIMP) positive (77.5 %) or negative (22.5 %). CIMP(pos) (IDH mutant) tumors showed a further separation based on copy-number status of chromosome arms 1p and 19q. CIMP(neg) (IDH wild type) tumors showed hallmark copy-number alterations of glioblastomas, and clustered together with CIMP(neg) glioblastomas without forming separate groups based on WHO grade. Notably, there was no molecular evidence for a distinct biological entity representing anaplastic oligoastrocytoma. Tumor classification based on CIMP and 1p/19q status was significantly associated with survival, allowing a better prediction of outcome than the current histopathological classification: patients with CIMP(pos) tumors with 1p/19q codeletion (CIMP-codel) had the best prognosis, followed by patients with CIMP(pos) tumors but intact 1p/19q status (CIMP-non-codel). Patients with CIMP(neg) anaplastic gliomas (GBM-like) had the worst prognosis. Collectively, our data suggest that anaplastic gliomas can be grouped by IDH and 1p/19q status into three molecular groups that show clear links to underlying biology and a significant association with clinical outcome in a prospective trial cohort.
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Neoplasias Encefálicas/clasificación , Neoplasias Encefálicas/genética , Variaciones en el Número de Copia de ADN/genética , Metilación de ADN/genética , Glioma/clasificación , Glioma/genética , Adulto , Deleción Cromosómica , Cromosomas Humanos Par 1/genética , Cromosomas Humanos Par 19/genética , Islas de CpG/genética , ADN Helicasas/genética , Metilasas de Modificación del ADN/genética , Enzimas Reparadoras del ADN/genética , Femenino , Alemania , Humanos , Estimación de Kaplan-Meier , Masculino , Persona de Mediana Edad , Mutación/genética , Proteínas Nucleares/genética , Telomerasa/genética , Proteínas Supresoras de Tumor/genética , Proteína Nuclear Ligada al Cromosoma XRESUMEN
BACKGROUND: This study aimed to examine whether dyadic coping (DC) is associated with relationship satisfaction (RS) among couples facing cardiac diseases. Furthermore, the moderating role of both partners' anxiety and depression was tested. METHODS: One hundred cardiac patients (81.5% men) and their partners (81.5% women) completed a self-report questionnaire during hospitalization. The Actor-Partner Interdependence Model (APIM) and moderation analyses were used to assess the above associations. RESULTS: Results showed that positive DC was significantly related to higher levels of RS, and negative DC was related to lower levels of RS. Furthermore, patient and partner psychological distress significantly moderated the link between DC and RS: patient-perceived positive DC was associated with higher partner RS when partner depression was high; partner-perceived positive DC was associated with higher patient RS when patient anxiety was low; patient-perceived negative DC has associated with lower patient RS when patient anxiety and depression were high. CONCLUSION: This study showed that positive DC is associated with a more satisfying relationship and identified under what conditions of cardiac-related distress this can happen. Furthermore, this study underlined the importance of examining DC in addition to the individual coping skills as a process pertaining to personal well-being and couple's outcomes.
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Objective: The Left Ventricular Assist Device (LVAD) has increasingly become a primary therapeutic option for longer-waiting heart transplant lists. Although survival rates are growing, the device requires complex home care. Therefore, the presence of a caregiver trained in the LVAD management is important for the success of the therapy. The LVAD leads both patients and their caregivers to experience new challenges and adapt to new lifestyle changes and limitations - but their subjective beliefs before home management remained little explored. Design: This study identified, using a phenomenological hermeneutic approach, the main components of the LVAD experience of six patient-caregiver dyads interviewed during cardiac rehabilitation. Results: We identified 4 master themes: Being between life and death, Being human with a heart of steel, Sharing is caring (and a burden), and Being small and passive. Conclusion: The knowledge from this study can be used as a guide for healthcare providers in counseling LVAD recipients and their caregivers.
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BACKGROUND: Next generation sequencing (NGS) technology has revolutionized genomic and genetic research. The pace of change in this area is rapid with three major new sequencing platforms having been released in 2011: Ion Torrent's PGM, Pacific Biosciences' RS and the Illumina MiSeq. Here we compare the results obtained with those platforms to the performance of the Illumina HiSeq, the current market leader. In order to compare these platforms, and get sufficient coverage depth to allow meaningful analysis, we have sequenced a set of 4 microbial genomes with mean GC content ranging from 19.3 to 67.7%. Together, these represent a comprehensive range of genome content. Here we report our analysis of that sequence data in terms of coverage distribution, bias, GC distribution, variant detection and accuracy. RESULTS: Sequence generated by Ion Torrent, MiSeq and Pacific Biosciences technologies displays near perfect coverage behaviour on GC-rich, neutral and moderately AT-rich genomes, but a profound bias was observed upon sequencing the extremely AT-rich genome of Plasmodium falciparum on the PGM, resulting in no coverage for approximately 30% of the genome. We analysed the ability to call variants from each platform and found that we could call slightly more variants from Ion Torrent data compared to MiSeq data, but at the expense of a higher false positive rate. Variant calling from Pacific Biosciences data was possible but higher coverage depth was required. Context specific errors were observed in both PGM and MiSeq data, but not in that from the Pacific Biosciences platform. CONCLUSIONS: All three fast turnaround sequencers evaluated here were able to generate usable sequence. However there are key differences between the quality of that data and the applications it will support.
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Análisis de Secuencia de ADN/instrumentación , Análisis de Secuencia de ADN/métodos , Composición de Base/genética , Secuencia de Bases , Bordetella pertussis/genética , Bases de Datos Genéticas , Biblioteca de Genes , Genoma Bacteriano/genética , Genoma de Protozoos/genética , Motivos de Nucleótidos/genética , Plasmodium falciparum/genética , Polimorfismo de Nucleótido Simple/genética , Staphylococcus aureus/genéticaRESUMEN
Cardiac patients show alarming levels of nonadherence to medications. It is important to consider also patient activation levels. Furthermore, the partner could have a supporting role in these processes. The aim of this study was to investigate the mediating role of patient health self-efficacy (HSE) in the link between dyadic coping (DC) and two self-management outcomes (i.e. medication adherence and patient activation) across the first 6 months of cardiac disease. One hundred couples completed two self-report questionnaires during the hospitalisation for cardiac disease and 6 months after discharge. A longitudinal and dyadic research design was adopted. Cross-sectional analyses at T0 revealed that patient-provided and perceived positive DC and common DC are positively associated with HSE, which in turn is positively associated with medication adherence. HSE mediated the association between patient positive and common DC styles, with the only exception of Patient-provided positive DC, and patient activation. Conversely, patient-provided and perceived negative DC are negatively associated with HSE, which in turns is positively associated with medication adherence and patient activation. Prospective analyses showed that only patient-perceived negative DC at discharge is negatively associated with HSE at T1, which in turns is positively associated with patient activation over time. These results suggest to consider patient perceived and provided DC as antecedents of self-management outcomes via patient HSE. Furthermore, our results recommend to pay particular attention to negative DC, whose negative consequences are manifested also over time, planning interventions targeting partners' awareness of their own DC style.
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Enfermedades Cardiovasculares , Cardiopatías , Automanejo , Adaptación Psicológica , Estudios Transversales , Humanos , Relaciones Interpersonales , Estudios Prospectivos , AutoeficaciaRESUMEN
Managing cardiac illness is not easy because it dramatically disrupts people's daily life and both the patient and his/her spouse are at risk for experiencing distress, which, in turn, may affect the support provided by the partner as caregiver. The partner, in fact, is the main source of support, but his/her support may sometimes be inadequate. In addition, dyadic coping (i.e., the way partners cope together against stress and support each other in times of difficulty) could likely be a moderating factor. The main aim of the present study was to examine the role that dyadic coping (DC, in terms of positive, negative, and common dyadic coping responses) plays in moderating the link between patient and partner cardiac illness-related distress (in terms of anxiety and depression) and partner support (in terms of overprotection, hostility, and partner support for patient engagement). The study included 100 married couples faced with cardiac illness who completed a self-report questionnaire. We analyzed our data in PROCESS using multiple regressions in order to assess the moderating effects of DC responses in the relationship between the couple's cardiac illness-related distress and partner support. With regard to patient distress, results showed that higher levels of patient anxiety and depression were linked with ineffective partner support (i.e., overprotection and hostility). With regard to partner distress, higher levels of partner depression were linked with hostility; higher levels of partner depression and anxiety were associated with less partner support for patient engagement. Moreover, the association between distress and partner support was moderated by the quality of DC. In particular, low positive DC represented a risk factor for both the patient and the partner during a cardiac illness, as low positive DC exacerbated the link between patient and partner distress and less effective partner support styles. Also, higher levels of negative DC were risky for couples: The association between distress and less adequate partner supportive behaviors was stronger in the case of higher negative DC. These results imply a need for psychosocial interventions for couples in cardiac illness, especially for couples lacking relational competences, such as positive dyadic coping.
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Perceived superiority, the tendency to regard one's own relationship as better than other people's relationships, is a key relationship maintenance mechanism. Little is known about whether and how it changes during the transition to marriage, a pivotal moment in most couples' life cycle. In a longitudinal study following 97 couples for three waves across the transition, men presented stable perceived superiority, whereas women presented a curvilinear change in superiority perceptions, with a substantial increase in perceived superiority between T1 and T2 and a significantly reduced change between T2 and T3. In addition, trajectories differed according to partners' commitment level. More committed and less committed partners both showed a curvilinear change in perceived superiority, though following different patterns. Results point to the functional value of perceived superiority, which emerges as a strategy aimed at sustaining partners through the challenges deriving from the transition to marriage.
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Cultura , Dominación-Subordinación , Matrimonio/psicología , Autoimagen , Adaptación Psicológica , Adulto , Femenino , Estudios de Seguimiento , Rol de Género , Humanos , Estudios Longitudinales , Masculino , Satisfacción Personal , Encuestas y CuestionariosRESUMEN
The new Coronavirus (COVID-19) has been declared a global pandemic by the World Health Organization (WHO). The sudden outbreak of this new virus and the measure of lockdown adopted to contain the epidemic have profoundly changed the lifestyles of the Italian population, with an impact on people's quality of life and on their social relationships. In particular, due to forced and prolonged cohabitation, couples may be subject to specific stressors during the epidemic. In addition, living with a chronic health condition may add specific challenges to the ones posed by the epidemic itself. The present cross-sectional study aimed to provide a picture of the challenges as well as the resources for both individual and relational well-being of Italian individuals in a couple relationship (N = 1921), with a specific attention to the comparison between individuals living with and without a chronic disease. Results showed that people with a chronic disease had lower psychological well-being and more fears and worries about the COVID-19. People with a chronic disease perceived fewer resources than healthy people. Moreover, the challenges are shown to be associated with less psychological well-being and high pessimism about the future. Instead individual, relational, and social resources play a protective role during the pandemic for both healthy and chronically ill people.
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Glioblastoma frequently exhibits therapy-associated subtype transitions to mesenchymal phenotypes with adverse prognosis. Here, we perform multi-omic profiling of 60 glioblastoma primary tumours and use orthogonal analysis of chromatin and RNA-derived gene regulatory networks to identify 38 subtype master regulators, whose cell population-specific activities we further map in published single-cell RNA sequencing data. These analyses identify the oligodendrocyte precursor marker and chromatin modifier SOX10 as a master regulator in RTK I-subtype tumours. In vitro functional studies demonstrate that SOX10 loss causes a subtype switch analogous to the proneural-mesenchymal transition observed in patients at the transcriptomic, epigenetic and phenotypic levels. SOX10 repression in an in vivo syngeneic graft glioblastoma mouse model results in increased tumour invasion, immune cell infiltration and significantly reduced survival, reminiscent of progressive human glioblastoma. These results identify SOX10 as a bona fide master regulator of the RTK I subtype, with both tumour cell-intrinsic and microenvironmental effects.
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Neoplasias Encefálicas/clasificación , Neoplasias Encefálicas/genética , Epigenoma , Glioblastoma/clasificación , Glioblastoma/genética , Factores de Transcripción SOXE/metabolismo , Línea Celular Tumoral , Metilación de ADN/genética , Elementos de Facilitación Genéticos/genética , Femenino , Regulación Neoplásica de la Expresión Génica , Humanos , Masculino , Mesodermo/patología , Persona de Mediana Edad , Fenotipo , Reproducibilidad de los Resultados , Factores de Transcripción SOXE/genéticaRESUMEN
The present study was aimed at examining the role of explicit stress communication in the context of dyadic coping. The general aim of the present study was to test (a) whether explicit communication of daily stressful events predicted relationship satisfaction and (b) whether the perception of responsiveness in dyadic coping mediated the association between explicit stress communication and partners' satisfaction. We analyzed daily diary data from 55 married couples and multilevel analyses suggested that, although explicit stress communication was not associated with relationship satisfaction, it predicted both partners' responsiveness in dyadic coping behaviors. Finally, responsive dyadic coping behaviors mediated the relationship between explicit stress communication and relationship satisfaction. On the whole, our findings showed that perceived responsiveness in dyadic coping with daily stressors was facilitated by explicit stress communication and that this contributed to the effectiveness of dyadic coping behaviors in fostering partners' relationship satisfaction. We discussed how the current study contributes to the understanding of the dyadic coping process and its contribution to partners' satisfaction, underscoring the importance of communication skills.
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After separation or divorce, people generally experience a deterioration of health, not only in terms of physical well-being but also in terms of emotional and social well-being. In addition, when separated, individuals are parents as well and they are concerned with the well-being of their children. The main task for separated parents is to maintain a parental alliance (coparenting) for the sake of their children's well-being. Social support is a critical resource, which helps parents face their new life condition, promoting their psychological well-being. In recent years in Italy, many associations targeting separated and divorced parents have been founded: They support ex-partners during and after separation and are active in defending their rights. These associations are voluntary associations/non-profit organisations and self-help groups, which are constituted by parents themselves who associate to support each other in the tasks connected with separation. The present study investigated, with an explorative aim, the role of these associations for separated parents' well-being and coparenting abilities. In particular, drawing on a sample of 318 Italian separated parents (73.30% fathers; 26.70% mothers) belonging to a formal association targeting separated parents, the study analysed whether and how the perception of being supported by the association was related to psychological and relational well-being and to coparenting. Results showed that the more parents perceived to be supported by the association the less they were depressed, the more they were satisfied with the relationship with children and friends, and the more they displayed coparenting abilities. Our findings suggest that social support from these associations is a resource for separated parents' health.
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Divorcio/psicología , Responsabilidad Parental/psicología , Padres/psicología , Apoyo Social , Adulto , Niño , Padre/psicología , Femenino , Humanos , Relaciones Interpersonales , Italia , Masculino , Madres/psicología , Conducta SocialRESUMEN
In this themed issue of the Journal of Prevention & Intervention in the Community, the first four contributions provide knowledge on factors that can support or hinder positive parenting throughout children's lives. In particular, the first article examined the spillover of work stressors on parenting behaviors and the role of spousal support as a moderator of stress spillover. The second contribution examines the association between parents' promotion of volitional functioning and adopted children's sense of strength of family bonds and belonging to the adoptive family. The third article analyzes the negative impact of intrusive parenting on young adult children's romantic relationship quality and couple identity, and the fourth article examines parents' autonomous and controlled motivations to transmit values to their adolescent children and their associations with parents' socialization goals. Finally, the last two articles present the contents and evaluation of two parenting programs. The fifth article illustrates the development, content, and efficacy of an attachment-based intervention for parenting: the Video-feedback Intervention to promote Positive Parenting and Sensitive Discipline (VIPP-SD); the sixth article presents a qualitative evaluation of a group-based program focused on promoting parents' identity together with parenting skills: The Groups for Family Enrichment_Parent version (GFE_P).
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Relaciones Padres-Hijo , Responsabilidad Parental/psicología , Humanos , Estrés Laboral/psicología , Factores de RiesgoRESUMEN
The traditional objective of parenting enrichment programs is to train parents' abilities and specific competences, but less attention is paid to promoting participants' reflection on their parental identity. These programs are generally delivered to groups of parents, though the group is rarely considered a specific tool to promote changes in participants' relational functioning. The Groups for Family Enrichment_Parent version (GFE_P; Iafrate, Donato, & Bertoni, 2010 ; Iafrate & Rosnati, 2007 ) focus on parental identity in addition to parental competences and skills and purposely use the group of parents as an educational tool, adopting a semistructured format. In this article, we first introduce the characteristics of GFE_P, then we present the results of a qualitative evaluation of an application of this intervention to a group of Italian parents. Findings from the process evaluation showed that participants actively contributed to the development of themes during the intervention. Result evaluation suggested that the recognition of key aspects of parental identity can be an important prerequisite to the acquisition of better parenting skills. Implications for parenting programs design are discussed.
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Promoción de la Salud/organización & administración , Relaciones Padres-Hijo , Responsabilidad Parental/psicología , Padres/educación , Adulto , Niño , Femenino , Humanos , Italia , MasculinoRESUMEN
Currently we observe a gap between theory and practices of patient engagement. If both scholars and health practitioners do agree on the urgency to realize patient engagement, no shared guidelines exist so far to orient clinical practice. Despite a supportive policy context, progress to achieve greater patient engagement is patchy and slow and often concentrated at the level of policy regulation without dialoguing with practitioners from the clinical field as well as patients and families. Though individual clinicians, care teams and health organizations may be interested and deeply committed to engage patients and family members in the medical course, they may lack clarity about how to achieve this goal. This contributes to a wide "system" inertia-really difficult to be overcome-and put at risk any form of innovation in this filed. As a result, patient engagement risk today to be a buzz words, rather than a real guidance for practice. To make the field clearer, we promoted an Italian Consensus Conference on Patient Engagement (ICCPE) in order to set the ground for drafting recommendations for the provision of effective patient engagement interventions. The ICCPE will conclude in June 2017. This document reports on the preliminary phases of this process. In the paper, we advise the importance of "fertilizing a patient engagement ecosystem": an oversimplifying approach to patient engagement promotion appears the result of a common illusion. Patient "disengagement" is a symptom that needs a more holistic and complex approach to solve its underlined causes. Preliminary principles to promote a patient engagement ecosystem are provided in the paper.
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[This corrects the article on p. 1199 in vol. 8, PMID: 28785230.].
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Atypical teratoid/rhabdoid tumor (ATRT) is one of the most common brain tumors in infants. Although the prognosis of ATRT patients is poor, some patients respond favorably to current treatments, suggesting molecular inter-tumor heterogeneity. To investigate this further, we genetically and epigenetically analyzed 192 ATRTs. Three distinct molecular subgroups of ATRTs, associated with differences in demographics, tumor location, and type of SMARCB1 alterations, were identified. Whole-genome DNA and RNA sequencing found no recurrent mutations in addition to SMARCB1 that would explain the differences between subgroups. Whole-genome bisulfite sequencing and H3K27Ac chromatin-immunoprecipitation sequencing of primary tumors, however, revealed clear differences, leading to the identification of subgroup-specific regulatory networks and potential therapeutic targets.