Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.

An Investigation Into The Perceptions Of Parents And Teachers Regarding The Adjustment To Sixth Grade Across School Configurations

A qualitative study was conducted in a large urban school district in the Mid-Atlantic region of the Unites States to investigate the perceptions of parents and teachers regarding the adjustment to sixth grade across school configurations. The investigation revealed the psychosocial and environmental factors that have an impact on sixth graders according to their grade span configurations. The study was conducted in the large urban school district, referred to as the “County,” which has a history of low and inconsistent achievement of sixth graders across a variety of grade span configurations. Through the analysis of the teacher and parent interviews conducted in two K-6 schools and two 6-8 middle schools, four themes were identified: transitioning, cultural awareness, social adjustment, and preparedness. The four themes emerged from the perceptions and observations of sixth graders, as shared by parents and teachers of sixth graders, according to their grade span configurations. Each of the responses was compared according to the identified grade span configuration K-6 and 6-8. From the data collected, recommendations were provided to the school district in which the study was conducted to better support teachers, parents, and sixth graders. Further research was also recommended of larger samples of sixth grade span configurations to better understand the complex dynamics of the relationships between grade span configurations for sixth graders and student achievement.

Evidence that risk adjustment is unnecessary in estimates of the User cost of money

Investors value the special attributes of monetary assets (e.g., exchangeability, liquidity, and safety) and pay a premium for holding them in the form of a lower return rate -- The user cost of holding monetary assets can be measured approximately by the difference between the returns on illiquid risky assets and those of safer liquid assets -- A more appropriate measure should adjust this difference by the differential risk of the assets in question -- We investigate the impact that time non-separable preferences has on the estimation of the risk-adjusted user cost of money -- Using U.K. data from 1965Q1 to 2011Q1, we estimate a habit-based asset pricing model with money in the utility function and find that the risk adjustment for risky monetary assets is negligible -- Thus, researchers can dispense with risk adjusting the user cost of money in constructing monetary aggregate indexes

Does social–behavioral adjustment mediate the relation between executive function and academic readiness?

Research shows that executive function and social–behavioral adjustment during the preschool years are both associated with the successful acquisition of academic readiness abilities. However, studies bringing these constructs together in one investigation are lacking. This study addresses this gap by testing the extent to which social and behavioral adjustment mediated the association between executive function and academic readiness. Sixty-nine 63–76month old children, enrolled in the last semester of the preschool year, participated in the present study. Tasks were administered to measure executive function and preacademic abilities, and teachers rated preschoolers' social–behavioral adjustment. Hierarchical regression analyses revealed that social–behavioral adaptation was a significant mediator of the effect of executive function on academic readiness, even after controlling for maternal education and child verbal ability. These findings extend prior research and suggest that executive function contributes to early academic achievement by influencing preschoolers' opportunities to be engaged in optimal social learning activities.

Iluminação emocional, percepção visual e bem-estar

Dissertação de Mestrado para obtenção do grau de Mestre em Design de Produto, apresentada na Universidade de Lisboa - Faculdade de Arquitectura.

The Impact of Friends on Newly Immigrant Children’s Emotional and Behavioral Adjustment

Immigration disrupts an individual’s support network; however, the stresses of the immigration process increase the need for social support. The presence of social support becomes essential for immigrant children and adolescents to cope with these important transitional circumstances. Friends are both sources of social support and models for behavior. Furthermore, friendship networks are known to have a significant influence on youths’ functioning. Literature suggests that peer relations become more important in adolescence and friend support is related to child and adolescent well-being. Thus, friend relationships may be particularly important for immigrant youths who experience disruption in their friendship networks during the process of migration to another country. In addition to friendship networks and support, friend characteristics also need to be taken into consideration as important factors for immigrant youth adjustment. My study involved analyses of the effects of friend support and friend problem behaviors on emotional and behavioral functioning for elementary, middle, and high school age newly immigrant children and adolescents. Immigrant children and adolescents (N = 503) were interviewed at schools by interviewers fluent in participants’ languages. Structural Equation Modeling (SEM) analyses revealed that friend support and friend problem behaviors were related to children’s self-esteem and externalizing behaviors. In addition, friend problem behavior alone predicted children’s psychological symptoms and depression scores. Furthermore, age/grade was found to be a moderator for the relation between friend problem behavior and immigrant youth behavioral adjustment such that compared to elementary and high school cohorts, middle school youths showed more externalizing behaviors when they had friends performing problem behaviors. Results supported the idea that both friend support and friend behavior are related to newly immigrant youths’ emotional and behavioral adjustment. This study informs further research and interventions concerning the development of programs to facilitate immigrant youths’ adjustment by revealing friendship factors related to their adaptation.

Romantic relationships and adjustment in early adulthood: The role of cross-sex experience in the context of social norms and support

Attachment and interpersonal theory suggest a sequential pattern of relationships beginning in the earliest stage of development and progressing to social and eventually romantic relationships. Theoretically, cross-sex experiences have an important role in the progression of interpersonal relationships. Despite the prevalence of these theories about the nature of romantic relationship development, the linkage of cross-sex experience (CSE) to romantic relationships has not been established. Indeed, it is an intuitive assumption, especially within Western society and these theories do not consider socio-cultural factors that may influence CSE and relationship satisfaction. This study addresses the varying contextual factors that may contribute to relationship satisfaction and adjustment, aside from CSE, and is divided into two parts. Study 1, addresses CSE, relationship satisfaction, and adjustment in a unique population, ultra-Orthodox Jews. Among this population, social or romantic CSE is limited and sexes are effectively segregated. Study 2, expanded the study to a larger sample of U.S. college students, to assess the linkage of CSE to romantic relationship satisfaction in a more typical Western population. It included social norm and support variables to address the contextual nature of relationship development and satisfaction. Results demonstrated clear differences in the relation between CSE and relationship satisfaction in the two samples. In the first sample CSE was unrelated to relationship satisfaction; nevertheless, relationship satisfaction was associated with adjustment as it is for more typical populations with greater CSE. These results suggested the importance of specifying how social norms and social support relate to CSE, relationship satisfaction and adjustment. The results from the second sample were consistent with the theoretical framework upon which the social/romantic literature is based. CSE was directly connected to relationship satisfaction. As anticipated, CSE, relationship satisfaction, and adjustment also varied as a function of social norms and support. These findings further validate the influence of socio-cultural factors on relationship satisfaction and adjustment. This study contributes to the romantic relationship literature and broadens our understanding of the complex nature of interpersonal and romantic relationships.^

The old and the oldest-old: Do they have different perspectives on adjustment to aging?

Background: Older adults experience varying challenges in old age. This study aims to explore the indicators of adjustment to aging (AtA) and to examine the potential explanatory mechanisms of a correlational model for AtA for the old and oldest-old adults. Methods: This qualitative study comprised demographics and semistructured interviews. Complete information on 152 older adults aged between 75 years and 102 years (mean ¼ 83.76 years; standard deviation ¼ 6.458). Data was subjected to content analysis. The correlational model of indicators of AtA was analyzed using a multiple correspondence analysis. Results: “Occupation and achievement” was the most mentioned indicator of AtA by the old participants (17.7%), whereas “existential meaning and spirituality” was the most verbalized indicator of AtA for the oldest-old participants (16.9%). AtA was explained by a three-factor model for each age group. For the old participants, the largest factor “occupational and social focus” accounted for 33.6% of total variance, whereas for the oldest-old participants, “spirituality and health focus” represented 33.5% of total variance. Conclusion: The outcomes presented in this paper stressed the varied perspectives concerning AtA, contoured in two different models, and the need of considering these when designing and implementing programs in health care for the old and the oldest-old.

Parental Adjustment to Disability, Stress Indicators and the Influence of Social Support

Research into families of children and young people with disability maintain that parents or caregivers seem to experience higher levels of global stress than parents of children without disabilities, thereby presenting a high risk of developing disorders in their health and quality of life. The aim of this study is to understand the differences in parental stress and social support among groups of parents whose children have different disabilities in the context of parental adjustment to disability. Considering that adjustment is related to the effectiveness with which the family uses its resources and the support of their social network, we intend to analyse the differences of stress and social support among groups of parents of children with different problems and to clarify the relationships between the variables under study in order to adapt family intervention strategies. For this purpose a comparative, descriptive-correlational study was undertaken. The convenience sample included 152 parents of children with different disabilities (82 with intellectual disability, 37 with motor problems and 33 with autism) supported by schools and institutions in Viseu. The instruments used were: a Portuguese version of the Parenting Stress Index (Abidin, 1995), the Social Support Questionnaire – short version (Pinheiro & Ferreira, 2001) and a Parental Questionnaire (demographic and family data). Data were collected in schools and institutions that support people with disabilities, located in the Municipality of Viseu (Portugal). The results revealed significant differences between groups of parents in the partial results of parental stress, specifically in the Hyperactivity/Distract (DI), Acceptability (AC) and Adaptability (AD), dimensions of the Child Domain subscale (CD stress) and the Role Restriction (RO), dimension of Parent Domain subscale (PD stress). With regard to social support dimensions, we found significant differences between parents in the extent and availability of the social support network (SSQN).

Hospital without dyspnea: Rationale and design of a multidisciplinary intervention

Dyspnea is a common and disabling symptom of respiratory and heart diseases, which is growing in incidence. During hospital admission, breathlessness is under-diagnosed and under-treated, although there are treatments available for controlling the symptom. We have developed a tailored implementation strategy directed to medical staff to promote the application of these pharmacological and non-pharmacological tools in dealing with dyspnea. The primary aim is to decrease the rate of patients that do not receive an adequate relief of dyspnea. This is a four-stage quasi-experimental study. The intervention consists in two teaching talks that will be taught in Cardiology and Respiratory Medicine Departments. The contents will be prepared by Palliative Care specialists, based on available tools for management of dyspnea and patients' needs. A cross-sectional study of dyspnea in hospitalized patients will be performed before and after the intervention to ascertain an improvement in dyspnea intensity due to changes in medical practices. The last phase consists in the creation of consensus protocols for dyspnea management based in our experience. The results of this study are expected to be of great value and may change clinical practice in the near future and promote a changing for the better of dyspnea care.

An integrative multidisciplinary approach to understanding cryptic divergence in Brazilian species of the Anastrepha fraterculus complex (Diptera: Tephritidae).

An integrative multidisciplinary approach was used to delimit boundaries among cryptic species within the Anastrepha fraterculus complex in Brazil. Sexual compatibility, courtship and sexual acoustic behaviour, female morphometric variability, variation for the mitochondrial gene COI, and the presence of Wolbachia were compared among A. fraterculus populations from the Southern (Vacaria, Pelotas, Bento Gonçalves, S~ao Joaquim) and Southeastern (Piracicaba) regions of Brazil. Our results suggest full mating compatibility among A. fraterculus populations from the Southern region and partial pre-zygotic reproductive isolation of these populations when compared with the population from the Southeastern region. A. fraterculus populations from both regions differed in the frequency of courtship displays and aspects of the calling phase and mounting acoustic signal. Morphometric analysis showed differences between Southern region and Southeastern region samples. All populations analyzed were infected with Wolbachia. The trees generated from the COI sequencing data are broadly congruent with the behavioural and morphometric data with the exception of one Southern population. The likely mechanisms by which A. fraterculus populations might have diverged are discussed in detail based on behavioural, morphometric, molecular genetics, and biogeographical studies

Investigation of the Impacts of Parental Chronic Illness on Youth Caregiving Experiences and Psychosocial Adjustment.

Objective: Parental chronic illness has an impact on several aspects of offspring’s life. Three major impediments to research progress in this field are undeveloped and untested theoretical frameworks, no clear conceptualization of youth caregiving, and no available instrument to assess such construct in Italian. To address these weaknesses, the aims of this PhD dissertation were: (1) to investigate the psychometric properties of the Italian version of the Young Caregiver of Parents Inventory-Revised (YCOPI-R); (2) to empirically examine a model of the effects of parental illness on youth and family functioning innovatively analyzing the role of psychological flexibility; (3) to test a refined conceptualization of youth caregiving. Methods: A total of 501 adolescents aged 11 to 24 (295 young caregivers and 206 young noncaregivers) completed a questionnaire regarding youth caregiving, parental illness, and youth adjustment. In the first study, young caregivers were compared to noncaregivers, while the other studies used only the young carers subgroup. Results: The first study indicated that the Italian version of the YCOPI-R demonstrated sound psychometric and was able to discriminate between young caregivers and noncaregivers. The second study underlined the key protective role of psychological flexibility in shaping youth adjustment and family functioning in the context of parental illness. The third study innovatively clarified the nature of youth caregiving, indicating that it is a tripartite construct related to both positive and negative youth adjustment outcomes. Conclusions. This PhD project drew attention towards youth of chronically ill parents, a segment of the young population which is presently almost completely neglected in Italy by health policies and healthcare providers. This PhD project ultimately shed light into the processes through which parental illness results in detrimental youth outcomes and highlighted avenues for interventions that target empirically supported mechanisms which ameliorate the detrimental effects of parental illness on youth.

Surgery after biological therapy in locally advanced NSCLC with molecular driver: feasibility and effectiveness of a new multidisciplinary approach

Introduction: Surgical outcomes after biological therapy have not been investigated yet and no information about timing, postoperative complications and survival have been recorded. Methods: This is a prospective study which compares a group of stage IIIA and IIIB NSCLC patients treated with biological therapy with patients undergoing standard induction chemotherapy. Data reported are preliminary results on the safety and effectiveness of surgery after target therapy. Results: We compared 22 patients treated with standard chemotherapy (Group 1) and 6 patients who received target therapy (Group 2). No differences were observed with an important bias due to the limited number of cases. The median time of resection was 159.8 ± 62.8 for group 1 and 201 ± 57.8 for group 2 (p=0.194). Complete resection was obtained in all Group 1-cases. Post-operative complication rate was 22% vs 16% (p=1). Pathologists reported necrosis >50% in 13% in group 1, Fibrosis >50% was presents respectively in 27% and 33% of patients (p=1). Residual vital tumor was >50% in 77% of patients undergone CT and in 66% of patients undergone TT (p=0.622). A total of 6 (31%) patients in the CT-group developed recurrence, 3 in the TT- group (64.2%), p was 0.634. No difference was observed both in terms of OS (P=0.29, Figure 3) and in term of DFS (P=0.106, Figure 4). Discussion: There is no consensus in the use of target therapy for advanced tumor in association with surgery. EGFR-tyrosine kinase inhibitors showed higher and more rapid response and our study wants to demonstrate that surgery after target therapy gives full access to the advantage of definitive local treatment. In our series, despite fibrosis, radical surgery has been achieved in all patients operated. The intraoperative blood loss, operation time, postoperative hospital stay and postoperative complication rate seems to be similar.

Multidisciplinary approach to manage the striped venus clam (Chamelea gallina) fisheries

To responsively manage the striped venus clam (Chamelea gallina) fisheries, a multidisciplinary approach has been adopted through the investigation of new and updated biological aspects (e.g. age, growth, reproduction, size at first maturity, fecundity) and the interaction gear- target or non-target species (e.g. reburial ability, survival potential and exerted damage). The striped venus clam is an important socio-economic species in the Italian fishery context, highly regulated by national and international laws aiming at guaranteeing both social and ecological sustainability. Studies on growth and reproduction revealed that the size at first maturity is reached within the first year of life, whereas the present Minimum Conservation Reference Size of 22 mm is reached at two year of age. The annual reproductive cycle, which is driven by rises in seawater temperature and chlorophyll-a concentration, spans during the warmer months (late spring-summer) with multiple spawning events of different intensity occurring over the spawning period, and the number of potentially emitted gametes is positively related to shell size. Reburial tests conducted on undamaged specimens highlighted the ability of clams to rebury in the sediment once discarded, independently from the size. On the other hand, survival experiments in the laboratory and at sea, on both damaged and undamaged individuals, served to demonstrate that the species has a high survival rate, thus supporting the claim that discarded individuals can contribute to restock the natural populations. Moreover, the evaluation and quantification of damage induced by dredging on the discarded macro-benthic fauna living associated with C. gallina highlighted that soft-shelled or soft-bodied species are the most affected by the fishing process and subjected to a higher mortality. All these findings are of pivotal importance to rationally support the management measures to be adopted in the striped venus clam fishery.