Health-Related Quality of Life of Patients with Marfan Syndrome-Polish Study.

Background: Despite extensive knowledge about the quality of life of people suffering from rare diseases, data on patients with Marfan syndrome (MFS) are scarce and inconsistent. Hence, the problem of assessing the quality of life (QOL) and its relationship with the assessment of which ailments are the most burdensome for these patients is still open. Aim: Comparison of the quality of life of patients with MFS and determination as to which of the reported complaints in patients with MFS are related to the QOL of patients. Methods: The study included 35 patients with MFS and 35 healthy controls, matched for gender and age. In the study, the questionnaire of quality of life assessment SF-36 was used to assess the level of health-related quality of life, as well as an interview of the most severe symptoms reported by patients with MFS. Results: The level of the physical dimension of the QOL (p < 0.001) and limiting of roles due to physical health (p = 0.002), as well as the level of general index of the QOL (p < 0.001), were statistically significantly lower in MFS patients when compared to controls. People from both studied groups do not vary in the scope of pain, vitality, social functioning, limiting the roles due to emotional problems, and state of mind but also in the mental dimension of the health-related quality of life (HRQL). Additionally, there has been a correlation between HRQL and the subjective assessment of the effects of orthopedic, ophthalmic, and cardiological problems in life, as well as lower exercise tolerance in the evaluation of people with MFS and QOL in most areas. Conclusions: Patients with MFS present a reduced QOL in the areas of physical functioning, limiting roles due to physical health, general feeling of general health, the physical dimension of the HRQL, and the general index of the QOL; in these areas, they require careful evaluation, as well as medical and psychosocial assistance.

Sibling Separation Due to Parental Divorce: Diagnostic Aspects.

Separation of siblings is one of the most difficult diagnostic problems faced by psychologists. Such situations are happening more often in the face of the increasing number of divorces and breakdown of relationships. Therefore, a diagnostic task becomes an in-depth assessment of intra-family relationships, ties connecting family members, the preferences of individual people and predicting the long-term consequences of the proposed solutions. The article is dedicated to this problem, and the issue is addressed through the theoretical perspective and the analysis of two cases, i.e., the situation of separated siblings. In the study of children, we present a relatively new method, based on the authors' clinical experience, which could be used to diagnose the family situation of children. The first goal was to analyze the reasons for the separation of siblings whose parents were in conflict during the separation (first case study) and after the separation (second case study), as well as to assess the functioning of the children resulting from the family breakdown, and the decision to separate them from siblings. The analysis allowed identifying the areas of sibling functioning, which should become the subject of diagnosis when working on expert opinions in divorce cases, or cases establishing contact between parents and children. The second aim of the report was to assess the effectiveness of using play as a diagnostic method in a situation that is a source of stress for the child (family breakdown) and causes tension (the diagnostic process in which this topic is discussed).

Walsh Family Resilience Questionnaire-Polish Adaptation (WFRQ-PL).

Family resilience is a construct based on interactive processes occurring in the family, enabling the family to effectively overcome everyday stressors, as well as developmental and unpredictable crises. By observing how the family deals with difficulties using family resilience processes, we are able to support both parents and protect children against the harmful effects of unfavourable conditions. The aim of our research was to carry out the procedure of adaptation to the Polish language and culture of the Walsh Family Resilience Questionnaire. In this study, 930 Poles participated (72.5% women), aged from 18 to 63 (M = 26.94, SD = 9.8). They filled in the questionnaire online. Confirmatory factor analysis confirmed the model with three factors: belief system, organisational processes, and communication processes. The model indicators were found to be well suited to the data: χ2/df = 1.12, RMSEA = 0.01, CFI = 0.99, TLI = 0.99, SRMR = 0.04. The reliability (Cronbach's alpha) of the scales was also satisfactory (0.94 for the belief systems, 0.86 for the organisational processes, and 0.94 for the communication processes). Tool validation with FRAS-PL scales showed convergence. We named the Polish version of the WFRQ Questionnaire Kwestionariusz Preznosci Rodzinnej Walsh (WFRQ-PL) and found it to be a good tool for assessing the processes of family resilience in our country.

The Use of Information and Communication Technologies in Family Support across Europe: A Narrative Review.

The COVID-19 pandemic has accelerated the use of information and communication technology (ICT) to deliver parenting and mental health support services to families. This narrative review illustrates the diverse ways in which ICT is being used across Europe to provide family support to different populations. We distinguish between the use of ICT in professional-led and peer-led support and provide implementation examples from across Europe. We discuss the potential advantages and disadvantages of different ways of using ICT in family support and the main developments and challenges for the field more generally, guiding decision-making as to how to use ICT in family support, as well as critical reflections and future research on its merit.

Exploring Resiliency and Parentification in Polish Adolescents.

Parentification is a form of distorted division of roles and responsibilities in the family where the roles of parent and child are reversed. A situation that goes beyond the child's capabilities and exhausts resources usually yields numerous negative consequences. Nevertheless, in some circumstances, parentification may be beneficial by shaping resiliency. The main aim of the study was to examine the relations between parentification characteristics and resiliency. There were 208 adolescents (Mage = 14.55; SDage = 1.00) who participated in the study. Resiliency was evaluated using the Polish Scale for Children and Adolescents SPP-18. Parentification level was measured with the polish Parentification Questionnaire for Youth. The analyses revealed significant relations between parentification and resiliency dimensions. The relations were different based on the participant's gender. The obtained results underline the role of resiliency in shaping the perception of family role dysfunctions such as parentification.

Distance learning in higher education during COVID-19: The role of basic psychological needs and intrinsic motivation for persistence and procrastination-a multi-country study.

Due to the COVID-19 pandemic, higher educational institutions worldwide switched to emergency distance learning in early 2020. The less structured environment of distance learning forced students to regulate their learning and motivation more independently. According to self-determination theory (SDT), satisfaction of the three basic psychological needs for autonomy, competence and social relatedness affects intrinsic motivation, which in turn relates to more active or passive learning behavior. As the social context plays a major role for basic need satisfaction, distance learning may impair basic need satisfaction and thus intrinsic motivation and learning behavior. The aim of this study was to investigate the relationship between basic need satisfaction and procrastination and persistence in the context of emergency distance learning during the COVID-19 pandemic in a cross-sectional study. We also investigated the mediating role of intrinsic motivation in this relationship. Furthermore, to test the universal importance of SDT for intrinsic motivation and learning behavior under these circumstances in different countries, we collected data in Europe, Asia and North America. A total of N = 15,462 participants from Albania, Austria, China, Croatia, Estonia, Finland, Germany, Iceland, Japan, Kosovo, Lithuania, Poland, Malta, North Macedonia, Romania, Sweden, and the US answered questions regarding perceived competence, autonomy, social relatedness, intrinsic motivation, procrastination, persistence, and sociodemographic background. Our results support SDT's claim of universality regarding the relation between basic psychological need fulfilment, intrinsic motivation, procrastination, and persistence. However, whereas perceived competence had the highest direct effect on procrastination and persistence, social relatedness was mainly influential via intrinsic motivation.

Adolescent well-being and learning in times of COVID-19-A multi-country study of basic psychological need satisfaction, learning behavior, and the mediating roles of positive emotion and intrinsic motivation.

The sudden switch to distance education to contain the outbreak of the COVID-19 pandemic has fundamentally altered adolescents' lives around the globe. The present research aims to identify psychological characteristics that relate to adolescents' well-being in terms of positive emotion and intrinsic learning motivation, and key characteristics of their learning behavior in a situation of unplanned, involuntary distance education. Following Self-Determination Theory, experienced competence, autonomy, and relatedness were assumed to relate to active learning behavior (i.e., engagement and persistence), and negatively relate to passive learning behavior (i.e., procrastination), mediated via positive emotion and intrinsic learning motivation. Data were collected via online questionnaires in altogether eight countries from Europe, Asia, and North America (N = 25,305) and comparable results across countries were expected. Experienced competence was consistently found to relate to positive emotion and intrinsic learning motivation, and, in turn, active learning behavior in terms of engagement and persistence. The study results further highlight the role of perceived relatedness for positive emotion. The high proportions of explained variance speak in favor of taking these central results into account when designing distance education in times of COVID-19.

The Relations Among Types of Parentification, School Achievement, and Quality of Life in Early Adolescence: An Exploratory Study.

Children who experience parentification may have trouble performing developmental tasks due to being overwhelmed by their family caregiving roles and responsibilities. Past studies have found that parentification is negatively associated with academic achievement. However, most of these studies are limited in that they are retrospective and examine the association but not the mechanisms shaping them. The aim of the study was to explore to what extent diverse types of parentification relate to academic achievement and to what extent these relations are mediated by self-reported quality of life among adolescents. The study sample was composed of Polish early adolescents (N = 191; age: M = 14.61; SD = 1.26). Types of parentification were measured with the Parentification Questionnaire for Youth, and quality of life was assessed with KidScreen27. School achievement was measured based on mean semester grade. We explored the associations among study variables and performed six mediation models in the planned analyses. Overall, bivariate relations were significant in a theoretically expected way, although the effect sizes for these associations were rather small. In the mediation analyses, the results showed that four of the six models were not significant. Different from previous studies, instrumental parentification was positively related to school achievement. Additionally, this positive association was mediated by adolescents' general quality of life. Taken together, the findings were similar and different from the empirical literature base on types of parentification and select outcomes.

Can Self-Esteem Help Teens Resist Unhealthy Influence of Materialistic Goals Promoted By Role Models?

The aim of the study was to examine the role of self-esteem in resisting the influence of materialistic goals of four social role models (mother, father, peers, and media) in adolescents (aged 13-16). Previous studies showed a negative correlation between the psychological health of teens and striving for materialistic goals, one of the main sources is the social modeling of materialism. Two studies were carried out. The first, correlational study, was conducted on target teens and their mothers, fathers, and peers of their choice. It examined if self-esteem is a moderator of the relationship between the materialism of social role models (mothers, fathers, peers, and media) and the materialism of teens. The second, experimental study, was conducted on target teens only. It examined how boosting the self-esteem of teens and activating materialism of social role models (mothers, fathers, peers, and media) may affect the materialism of teens. Study 1 showed a significant interaction effect of self-esteem and the materialism of peers on the materialism of teens. The interaction effects of self-esteem and other role models (parents and media) were not significant. Study 2 showed that elevated self-esteem lowered the influence of the materialism of peers on the materialism of teens. The results were not significant when other role models (parents and media) were analyzed. The results obtained in the presented studies indicate that the self-esteem of teens may have an important role in resisting the influence of materialism role models of peers. Practical implications of the studies for the psychological health of teens are also discussed.

Families of people with Marfan syndrome. The relationship between the functioning of the family system and the life quality of the affected persons. / Rodzina osoby z zespolem Marfana. Zwiazki funkcjonowania systemu rodzinnego z jakoscia zycia osoby chorej.

OBJECTIVES: The purpose of the study was to analyze the functioning of afamily as perceived by a person with Marfan syndrome and to look for relationships between the characteristics of the system and the overall quality of life of the ill. METHODS: Participants included 33 individuals with Marfan syndrome and 33 individuals without chronic illness. We used the Family Evaluation Scale - the Polish adaptation of the FACES-IVby D.H. Olson and the Satisfaction with Life Scale (SWLS) by Diener, Emmons, Larson and Griffin. RESULTS: People with Marfan syndrome perceive their families as significantly less coherent and significantly more disengaged than people without chronic illness. This family system of people with Marfan syndrome can be characterized by low scores on the "Cohesion" and "Flexibility" and high scores on the other four scales showing the level of imbalance of the family as a system, which makes this family profile similar to an ?unbalanced' system. Life satisfaction of people with Marfan syndrome correlated positively with "Cohesion", "Flexibility" and "Family Satisfaction" as features of family system perceived by them. CONCLUSIONS: The obtained results confirm the importance of supporting families of people with Marfan syndrome and specialist help aimed at dealing with emotional burden related to the health of the patient.

Polish adaptation of the Family Resilience Assessment Scale (FRAS).

Family Assessment Resilience Scale (FRAS) by Sixbey (2005) is based on the model proposed by Walsh (1996), allows to evaluate the processes of family resilience. The main goal of this study was to adapt the English version of FRAS to the Polish population (FRAS-PL) as there is no questionnaire in Poland to assess family resilience. After the process of translation into Polish and then back to English to check the correctness, the final version was accepted and participants (N = 502, 65% female, M = 24.60, SD = 6.86) filled out the questionnaire. To obtain the best-fitting model of the tool, confirmatory factor analysis (CFA) was used. Confirmatory Factor Analysis showed that the six-factor model fits the obtained data (χ2/df = 2.95, RMSEA = 0.06, CFI = 0.92, TLI = 0.91, WRMR = 1.87). The alpha coefficients are satisfactory for all subscales (from α = 0.63 to α = 0.95). The adaptation of FRAS-PL was compared to final versions accepted in different countries and explained in the cultural context. The Polish version of the scale, named FRAS-PL, can be used for both researchers and clinicians to assess family resilience.