Over 115 000 people are waiting for life-saving organ transplants, of whom a small fraction will receive transplants and many others will die while waiting. Existing efforts to expand the number of available organs, including increasing the number of registered donors and procuring organs in uncontrolled environments, are crucial but unlikely to address the shortage in the near future and will not improve donor/recipient compatibility or organ quality. If successful, organ bioengineering can solve the shortage and improve functional outcomes. Studying (...) manufactured organs in animal models has produced valuable data, but is not sufficient to understand viability in humans. Before risking manufactured organ experimentation in living humans, study of bioengineered organs in recently deceased humans would facilitate evaluation of the function of engineered tissues and the complex interactions between the host and the transplanted tissue. Although such studies do not pose risk to human subjects, they pose unique ethical challenges concerning the previous wishes of the deceased, rights of surviving family members, effective operation and fair distribution of medical services, and public transparency. This article investigates the ethical, legal and social considerations in performing engineered organ research on the recently deceased. (shrink)

The translational research community, in general, and the Clinical and Translational Science Awards (CTSA) community, in particular, share the vision of repurposing EHRs for research that will improve the quality of clinical practice. Many members of these communities are also aware that electronic health records (EHRs) suffer limitations of data becoming poorly structured, biased, and unusable out of original context. This creates obstacles to the continuity of care, utility, quality improvement, and translational research. Analogous limitations to sharing objective data in (...) other areas of the natural sciences have been successfully overcome by developing and using common ontologies. This White Paper presents the authors’ rationale for the use of ontologies with computable semantics for the improvement of clinical data quality and EHR usability formulated for researchers with a stake in clinical and translational science and who are advocates for the use of information technology in medicine but at the same time are concerned by current major shortfalls. This White Paper outlines pitfalls, opportunities, and solutions and recommends increased investment in research and development of ontologies with computable semantics for a new generation of EHRs. (shrink)

This study explored the unique effect of fathers’ parenting behaviors and the quality of co-parenting described as the degree of consistency between paternal and maternal parenting behaviors on children’s academic self-efficacy. The power of both pancultural parenting behaviors and specific parenting controlling behaviors that are relatively common in Turkish culture in predicting academic self-efficacy was tested. A total of 1,931 children completed measures of parenting behaviors and academic self-efficacy in math and literature courses in their school. Overall, girls reported higher (...) levels of literature self-efficacy, whereas boys reported higher levels of math self-efficacy. Compared to boys, girls perceived higher levels of positive parenting behaviors from both their fathers and mothers. The results of the regression analyses showed that, whereas father warmth had stronger effects on boys’ math self-efficacy, mother warmth had stronger effects on girls’ literature self-efficacy. Examination of the effects of co-parenting quality demonstrated that children with positively consistent parents reported the highest level of academic self-efficacy, whereas those having negatively consistent parents had the lowest level of academic self-efficacy. Analyses on inconsistent co-parenting, however, yielded compensatory effects, which were similar to positively consistent parents, and deterioration effects, which were similar to negatively consistent parents depending on the gender of parent and child, domain of parenting behavior, and academic efficacy. This study contributed to the current literature by showing the unique role of fathers over and beyond mothers, and confirmed the importance of positive parenting and parenting consistency in promoting children’s academic efficacy. Cultural and practical implications of the findings were discussed. (shrink)

ITALIAN: Vivere con onore la missione di pensare come El viviente luminoso y brutal , del filosofo Ibn tufayl, è il principio incarnato nelle idee di Ortega che ispira Rosa Chacel a vantaggio dell’autenticità della vita intellettuale. ella vive la passione meditativa del suo maestro come un aspetto peculiare del suo modo di essere: una funzione vitale che illumina il cammino grazie all’autorità di una personalità forte e carismatica. Pertanto Ortega è definito luminoso e brutale , volendo legare queste due (...) qualità con la congiunzione “e” per dare risalto all’antitesi racchiusa nella ricerca della verità esistenziale dell’uomo. ENGLISH: Living with honor the mission of thinking how El viviente luminoso y brutal, of the philosopher Ibn tufayl, is the principle embodied in the ideas of Ortega which inspires Rosa Chacel benefitting the authenticity of the intellectual life. She lives the meditative passion of his teacher as a specific aspect of her way of being: a vital function that illuminates the way through the authority of a strong and charismatic personality. therefore Ortega is defined bright and brutal, tying these two qualities with the conjunction “and” in order to emphasize the antithesis contained in the human search for existential truth. (shrink)

This collection of essays emphasizes society s increasingly responsible engagement with ethical challenges in emerging medical technology. Expansion of technological capacity and attention to patient safety have long been integral to improving healthcare delivery but only relatively recently have concepts like respect, distributive justice, privacy, and autonomy gained some power to shape the development, use, and refinement of medical tools and techniques. Medical ethics goes beyond making better medicine to thinking about how to make the field of medicine better. These (...) essays showcase several ways in which modern ethical thinking is improving safety, efficacy and efficiency of medical technology, increasing access to medical care, and empowering patients to choose care that comports with their desires and beliefs. Included are complimentary ethical approaches as well as compelling counter-arguments. Together, the articles demonstrate how improving the quality of medical technology relies on every stakeholder -- not just medical researchers and scientists -- to assess each given technology s strengths and pitfalls. This collection also portends one of the next major issues in the ethics of medical technology: developing the requisite moral framework to accompany shifts toward patient-centred personalized healthcare.". (shrink)

ObjectiveThe goal of the study was to explore the relationship between parent–children relationships related to using the internet among kids and potentially associated factors.Materials and MethodsA sample of 1.216 Vietnamese students between the ages of 12 and 18 agreed to participate in the cross-sectional online survey. Data collected included socioeconomic characteristics and internet use status of participants, their perceived changes in relationship and communication between parents and children since using the internet, and parental control toward the child’s internet use. (...) An Ordered Logistic Regression was carried out to determine factors associated with parent–children relationship since using the internet.ResultsThe characteristics of the relationship between children and their parents since using the Internet were divided into three levels: deterioration, stability, and improvement. The topics that children most often communicate with their parents include learning, housework, and future directions. Two-way interactive activities, such as supporting parents to use the Internet, have a positive impact on the parent–child relationship. Stubborn parental control, such as establishing rules about contact or allowing Internet access and setting up global positioning system to track negatively affecting parent–child relationships.ConclusionFindings indicated that changes in the quality of the parent–child relationship were self-assessed by participants regard to kids’ internet use, especially in the COVID-19 epidemic context. Educational campaigns and programs to raise awareness of parents as to the dangers and negative influences that their children may encounter online, psychology of children’s behaviors and effects of different responding strategies are recommended. (shrink)

The aim of this study was to investigate whether the quality of the sibling relationship moderates the association between parental psychological distress and child maladjustment. We extended previous literature by studying mothers and fathers separately and by including an observational measure of the quality of the sibling relationship. Participants were 52 two-parent families from a community sample who had at least two children living at home. Only one child was targeted for the study and studied in relation to his/her (...) siblings. Mothers and fathers completed a self-reported questionnaire on their psychological distress and individually assessed their child’s social-emotional maladjustment. The targeted child’s interactions with his/her siblings were observed by independent judges during a home-visit. Results indicate that both maternal and paternal psychological distress are significant predictors of child social-emotional maladjustment. Moderation analyses reveal that children of distressed fathers are at lower risk of social-emotional maladjustment when they engage in highly positive interactions with their siblings. Post hoc analyses suggest that only sibling empathy is a significant moderator of the association between paternal psychological distress and child maladjustment. The results of this study provide further evidence of the influence that fathers have in their child’s development and highlight the importance of using a systemic family approach to promote children’s social-emotional adaptation in the context of parental distress. (shrink)

Parental refusal of a recommended treatment is not an uncommon scenario in the neonatal intensive care unit. These refusals may be based upon the parents’ perceptions of their child’s projected quality of life. The inherent subjectivity of quality of life assessments, however, can exacerbate disagreement between parents and healthcare providers. We present a case of parental refusal of surgical intervention for necrotizing enterocolitis in an infant with Bartter syndrome and develop an ethical framework in which to consider the (...) appropriateness of parental refusal based upon an infant’s projected quality of life. (shrink)

The worldwide COVID-19 pandemic has shed more light on the difficulty of making health care decisions integrating scientific knowledge and values associated to life and death issues, human suffering, quality of life, economic losses, liberty of movement, etc. But the difficulties related to health care decisions and the use of innovative drugs or technologies are not new, and many countries have created agencies that have the mandate to evaluate new technologies in health care. Health Technological Assessment (HTA) reports’ aim is (...) to guide the decision makers in these difficult matters. There are two ethical components in HTA. The first is the report’s presentation of an ethical evaluation of the technology. The second is the value-ladenness of the HTA decision-making process itself. When implicit value judgments are not elicited, the justification of the final decision cannot be transparent. The present paper aims to identify and elicit the implicit value-judgments related to each step of the HTA process. This research is grounded on an applied ethics decision-making paradigm based on the role of value judgments in the decision-making process. The first part discusses two different approaches to values and value judgments in HTA. In the second part, citations mentioning value judgments extracted from a systematic review on the integration of ethics into HTA were categorized to elicit the value judgments and their criteria for each different HTA decision-making steps. The results show that there are 18 decision-making steps in the HTA process where 23 implicit value-judgments can be recognized. The range of these value judgments encompasses the whole HTA process: from the initial request, the presenting of the principal issues, to the final report’s dissemination. Since stakeholders need to understand which value judgments the conclusion of a report relies on, eliciting the implicit value judgments in the HTA decision-making process should yield more transparency. (shrink)

The men and women who serve in the armed forces, in the words of Major General Joseph Caravalho, “sign a blank check, co-signed by their families, payable to the Army, Navy, Air Force, or Marines, up to and including their lives.” It is human nature to consider such a pact in polarized terms; the pact concludes in either a celebratory homecoming or funereal mourning. But in reality, surviving catastrophic injury may incur the greatest debt. The small but real possibility of (...) losing the ability to bear biological children due to genitourinary combat injury has been a topic of discussion in hushed tones, behind closed doors. But as policy changes move the conversation into the open, we must be fully aware of the far-reaching and long-term impacts of decisions on those who have sustained genitourinary injury. In January 2016, Secretary of Defense Ashton Carter outlined a set of reforms that would improve the quality of life for military families by recognizing the importance of maintaining fertility, even in the face of severe injury. This first promising step could build a solid foundation of insuring fertility preservation for wounded service members with genitourinary injury, and it could set a precedent beyond the military for insuring treatment for people who have lost their reproductive capacity. Thus, the ethical challenges raised by the new policy require careful analysis. (shrink)

Background: The brief generic Multicultural Quality of Life Index is a culturally informed self-report 10-item questionnaire used to measure health-related quality of life. QoL is an important outcome measure in guiding healthcare and is held as a substantial parameter to evaluate the effectiveness of healthcare. Attention Deficit Hyperactivity Disorder in children might negatively influence the parents’ QoL. Having a validated questionnaire to measure QoL for this population will therefore be a vital first step in guiding healthcare for parents of children (...) with ADHD. We aimed to examine the reliability and validity of the Norwegian version of the MQLI in a sample of parents of children with ADHD.Methods: In a cross-sectional study, 128 parents of children with ADHD were recruited from four outpatient clinics within the Child and Adolescents Mental Health Services in Norway. They completed the MQLI along with an alternative well-being scale, the Five-item World Health Organization Well-being Index, and a form including demographic variables. Reliability and validity of the MQLI were examined. We conducted a factor analysis and calculated internal consistency and the correlation between the MQLI and the WHO-5.Results: Factor analysis of the parents reported MQLI yielded a one-factor solution. For the MQLI, Cronbach’s alpha was 0.73. The correlation between the two measures of MQLI and WHO-5 was high, reflecting convergent validity since the association between the two measures was strong.Conclusion: Results from this study support the reliability and validity of the Norwegian version of the MQLI for assessment of quality of life in parents of children with ADHD with good psychometric properties. Study findings support the use of the questionnaire in CAMHS. (shrink)

ABSTRACTPrevious work on the contribution of family environments to adolescent emotion dysregulation has tended to focus on broad parenting characteristics ; however, it is possible that day-to-day variability in parenting may also relate to emotion dysregulation. The current study sought to test whether inconsistency in the quality of daily parent-youth interactions related to multiple indices of emotion dysregulation in adolescents. Two-hundred-twenty-two adolescents participated with one parent. Adolescents completed 14-days of diary reporting on the quality of interactions with their parent and (...) their emotion dysregulation experiences for each day. Analyses reveal that, beyond the effects of average interaction quality, adolescents with greater variability in the quality of their interactions with their parent reported greater average emotion dysregulation across the days of diary recording and demonstrated greater variability in thei... (shrink)

Household confinement due to the rapid spread of the pandemic caused by COVID-19 has brought very significant changes, such as the forced stay-at-home of children due to the closure of schools. This has meant drastic changes in the organization of daily life and restrictions on their activities, including exercise, which could affect the quality of life of the children due to its importance. In order to study the relationship between physical activity and psychological well-being of minors, a study has been (...) carried out with Mixed Methods Research, combining survey methodology with transversal design with qualitative methodology using discourse analysis. A total of 234 parents of minors in Spain and several Spanish-speaking countries in America participated. The instrument was a questionnaire in Google Forms, which included the Kidscreen-27 quality of life scale. The results show significant differences in both the type of physical activity and its frequency due to age, and differences in parents’ perception of whether their children’s physical activity levels were sufficient or not, both on the health, mood and school subscales, and in the categorization of open responses referring to concerns due to the pandemic, analyzed with the ALCESTE technique. The relationship between physical activity of children and adolescents and quality of life is clearly concluded. (shrink)

_Background:_ Several studies have shown a connection between mothers with postnatal depression (PND) and emotional-behavioral problems in their children. Mothers’ psychopathology may impair interactional patterns with children and these outcomes can be influenced by father’s psychopathological symptoms. The primary aim of the study was to assess over time parent-infant interaction in families where mothers have experienced PND and have received psychological treatment during the child’s first year of life considering the severity of parents’ psychopathological symptoms and children’s temperament. _Methods:_ Three (...) groups of families were involved: families with mothers with PND wherein both parents followed a psychological treatment (TxMF); families with mothers affected by PND wherein only the mother followed the treatment (TxM) and control families wherein the mothers did not have a psychopathological diagnosis and did not receive any treatment (Con). The families were assessed at two time points through Symptom Check-List-90-Revised (SCL-90-R), Questionari Italiani Temperamento (QUIT) and the video-recorded procedure observing mealtime Scala di Valutazione Interazioni Alimentari (SVIA). _Results:_ Parents in the TxMF group had significantly lower SVIA scores (i.e., less maladaptive) at T2. TxMF group scored lower at T2 at SCL-90-R, whereas TxM showed no significant differences between T1 and T2. Involvement of fathers in the treatment was important to improve the psychopathological symptoms of both parents and the quality of interactions with their children. (shrink)

BackgroundParental reflective functioning refers to parents’ mental capacity to understand their own and their children’s behaviors in terms of envisioned mental states. As part of a broader concept of parental mentalization, PRF has been identified as one of the central predictors for sensitive parenting. However, the unique contribution of PRF to the quality of various parenting behaviors has not yet been addressed systematically. Thus, the present article provides a systematic overview of current research on the associations between PRF or (...) its sub-dimensions and observed parenting behaviors in infancy and early childhood, while considering the influence of contextual factors.MethodsThe review was conducted following the Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines. Systematic searches were carried out in five electronic databases. The eligibility and methodological quality of the identified studies were assessed using pre-defined criteria and a standardized checklist.ResultsSixteen studies with moderate to high quality on a total of 15 parenting behaviors were included, the majority of which examined positive parenting behaviors, while negative parenting behaviors were rarely investigated. Most of the associations indicated a positive effect of PRF on parenting behavior, with mostly small-sized effects. The strength and direction of the associations varied depending on the dimensionality of PRF, observation settings, sample types, socioeconomic factors, and cultural background. Moreover, five assessment instruments for PRF and 10 observation instruments for parenting behaviors were identified.ConclusionIn summary, PRF has shown a positive association with parenting quality. However, its complex interaction with further contextual factors emphasizes the need for differentiation of PRF dimensions and the consideration of the observation settings, assessment time points, psychosocial risks, and sample types in observational as well as intervention studies. Further high-quality studies with multivariate analyses and diverse study settings are required. (shrink)

Parental beliefs and knowledge about child development affect how they construct children’s home learning experiences, which in turn impact children’s developmental outcomes. A rapidly growing population of dual language learners (DLLs) highlights the need for a better understanding of parents’ beliefs and knowledge about dual language development and practices to support DLLs. The current study examined the dual language beliefs and knowledge of parents of Spanish-English preschool DLLs (n= 32). We further asked how socioeconomic and sociocultural factors were associated (...) with parental beliefs and knowledge, and how parental beliefs and knowledge related to DLLs’ home dual language experiences and school readiness skills as rated by their teachers. Results suggested both strengths and opportunities for growth in parental beliefs and knowledge. Moreover, parents from higher-SES backgrounds reported beliefs and knowledge that were more consistent with scientific evidence. Furthermore, parental beliefs and knowledge was positively related to relative Spanish input at home and negatively related to the frequency of English language and literacy activities. However, parental beliefs and knowledge were not associated with children’s dual language output at home or the frequency of Spanish language and literacy activities. Finally, parental beliefs and knowledge were associated with children’s school readiness skills in Spanish but not in English. Together, these findings highlight the need for culturally responsive interventions and parent education programs, which must recognize both the strengths and areas of improvement in parents of DLLs and support parents to transform knowledge into high-quality language and literacy experiences that benefit DLLs. (shrink)

Namesaking can be viewed as a mechanism to increase perceived parent-child similarity and, consequently, parental investment. Male and, to a lesser extent, firstborn children are more frequently namesakes than female and later-born children, respectively. However, a direct link between namesaking and parental investment has not been examined. In the present study, 632 participants from Central Europe indicated their first name, sex, birth order, number of siblings, sexual orientation, socioeconomic status, paternal and maternal first names, as well as relationship (...) quality with, and time and financial investment they received from, both parents during childhood. Mixed-effects models revealed associations between namesaking and parental investment. However, the effect of namesaking often appeared significant only in interaction with specific predictors, such as sex and primogeniture. It suggests instead that namesaking has an additive effect—it enhances the effect of biological factors on parental investment. In general, we found evidence for the bias in parental investment linked to name similarity among both parents, and support for the hypothesis that namesaking serves as a mechanism to increase paternity confidence and, thus, paternal investment. The effect of namesaking influences only certain types of parental investment—namely, those at the level of relationship quality. In addition, nonheterosexual orientation was the strongest negative predictor of paternal investment. Our study extends the research on parental investment by showing that cultural mechanisms, such as namesaking, can also exert some influence on parental rearing behavior. (shrink)

Under the Second Demographic Transition, alternative forms of living arrangement are on the rise. The aim of this article is to compare quality of life in children living in married and cohabiting families. We present the results of representative research conducted in Slovakia in 2018 (N = 1,010 respondents). We tested whether children brought up in traditional married families had better material resources and healthcare, fewer behavioural problems, better peer relations and spent more leisure time with their parents than children (...) brought up by cohabiting parents. We also investigated whether number of children in the family and net monthly household income affected the children’s quality of life. The results show that there were almost no differences in quality of life between children brought up by married and by cohabiting parents and that number of children in the family and level of net monthly household income affected only the child’s material resources. (shrink)

Studies have demonstrated that parents often exhibit a still face while silently reading their cell phones when responding to texts. Such disruptions to parent-child interactions have been observed during parental media use such as texting and these disruptions have been termed technoference. In the present study, we explored changes to mother-child interactions that occur before, during and after interruptions due to texting using an adapted naturalistic still face paradigm. Specifically, we examined the effect of an interruption due to either (...) maternal smartphone use or use of an analog medium on maternal interaction quality with their 20- to 22-month-old children. Mother-child interactions during free play were interrupted for 2 min by asking the mothers to fill out a questionnaire either by typing on the smartphone or on paper with a pen. Interactional quality was compared between free-play and interruption phases and to a no-interruption control group. Mixed ANOVA across phase and condition indicated that maternal responsiveness and pedagogical behavior decreased during the interruption phase for both the interruption groups but not for the no-interruption group. Children also increased their positive bids for attention during the paper-and-pencil and the smartphone conditions relative to the no-interruption control. These findings are consistent with a large body of research on the still-face paradigm and with a recent study demonstrating that smartphone interruptions decreased parenting quality. The present study, however, connects these lines of research showing the many everyday disruptions to parent-child interactions are likely to decrease parenting quality and that toddlers are likely to detect and attempt to repair such interruptions. (shrink)

The first years of life mark a time of rapid development and dietary change, as children transition from an exclusive milk diet to a modified adult diet. During these early years, children's learning about food and eating plays a central role in shaping subsequent food choices, diet quality, and weight status. Parents play a powerful role in children's eating behavior, providing both genes and environment for children. For example, they influence children's developing preferences and eating behaviors by making some foods (...) available rather than others, and by acting as models of eating behavior. In addition, parents use feeding practices, which have evolved over thousands of years, to promote patterns of food intake necessary for children's growth and health. However in current eating environments, characterized by too much inexpensive palatable, energy dense food, these traditional feeding practices can promote overeating and weight gain. To meet the challenge of promoting healthy weight in children in the current eating environment, parents need guidance regarding alternatives to traditional feeding practices. (shrink)

This study reviews several empirical researches which highlight the effect of post-divorce parental conflict as one of the most important factors on adolescents’ delinquency in divorced families. Research consistently shows that parental conflict affects parental relationship and this poor parental quality may transfer into poor parent-child relationship that may negatively influence adolescent functions and behaviors. Research showed that adolescents who are exposed to post-divorce parental conflict are at increased risk for high level of delinquency. Positive (...) associations between parental conflict and adolescent delinquency have been accounted for by parental rejection or withdrawal, parental hostility toward adolescents, lack of parental warmth, and corporal punishment and parent-adolescent conflict. (shrink)

Background: Understanding is an important goal of the informed consent process in research. We sought to assess the interrater reliability (IRR) and concurrent validity of two measures of understanding in child and young adult subjects and their parents. Methods: We conducted a cross-sectional survey and interview-based study of children and young adults participating in a clinical trial for cancer, along with one parent per child or young adult subject. We estimated the IRR of the Semi-Structured Comprehension Interview (SSCI) and the (...) MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR). We also estimated concordance between the SSCI, the MacCAT-CR, and the Quality of Informed Consent (QuIC). Results: For our sample of 32 subjects (16 parent–child pairs), IRR estimates were high for total score on the SSCI (intraclass correlation coefficient [ICC] = 0.88, 95% confidence interval [CI] = 0.76–0.94), as well as on the understanding (ICC = 0.93, 95% CI = 0.86–0.97) and reasoning (ICC = 0.97, 95% CI = 0.94–0.98) subscales of the MacCAT-CR. IRR was lower for the appreciation subscale of the MacCAT-CR (ICC = 0.70, 95% CI = 0.47–0.84). Scores on the SSCI were strongly correlated with scores on the understanding subscale of the MacCAT-CR (Spearman's rho = 0.72, 95% CI = 0.48–0.85) and the QuIC (Spearman's rho = 0.66, 95% CI = 0.24–0.87). Mean administration time for the SSCI was 3.1 minutes (95% CI = 2.7–3.5 minutes). Conclusions: The SSCI is a valid and reliable measure of understanding for use with both pediatric and adult research participants. It is easy to administer and score consistently, even by nonprofessional raters. The SSCI is a promising tool for use by clinician-investigators to study, detect, and correct deficiencies in understanding among children, adolescents, and adults making decisions about research participation. (shrink)

Objects: With the advent of genetic technologies, many genetic/metabolic disorders can be detected asymptomatically but might be untreatable, and the benefits and risks of screening for them are not fully known. The purpose of this study is to explore current practice with regard to the parental consent process in newborn screening .Design: Staff in 23 obstetric clinics/hospitals that conduct NBS in one city of southern Taiwan were interviewed. Using content analysis, 15 interview transcripts, eight completed questionnaires, and other relevant (...) documents from the 23 clinics/hospitals were analysed to reveal the framework of the parental consent process in NBS in southern Taiwan.Main measures: Three categories—informed consent, informed dissent, and no informed/consent—were developed to analyse the parental consent process in NBS.Results: The parental consent procedures in NBS and the quality of the information provided before obtaining consent vary widely. Because the traditional NBS was incorporated into routine paediatric practices in most clinics/hospitals, the most frequently encountered consent model is “informed dissent” and “no informed/consent” ; while an “informed consent” model is the frequent model for screening rare metabolic/genetic disorders.Conclusions: Specific guidelines to regulate the parental consent process for NBS are essential. Further studies should investigate parental responses to NBS, taking these as the basis on which to establish an informed consent model in Taiwan. (shrink)

What this book is about -- Theoretical perspectives : modernity and postmodernity, power and ethics -- Constructing early childhood institution : what do we think it is? -- Constructing the early childhood institution : what do we think they are for? -- Beyond the discourse of quality to the discourse of meaning making -- The stockholm project : constructing a pedagogy that speaks in the voice of the child, the pedagogue and the parent -- Pedagogical documentation : a practice for (...) reflection and democracy -- Minority directions in the majority world : threats and possibilities. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Parenting Adults with ASD: Lessons for Researchers and CliniciansCassandra R. Newsom, Amy S. Weitlauf, Cora M. Taylor, and Zachary E. WarrenRecent reviews of treatments for individuals with autism spectrum disorders (ASD) reveal how little we still know about how to help adolescents with ASD and their families successfully transition into adulthood (Shattuck et al., 2012b; Taylor et al., 2012a). Shattuck and colleagues found that services in the United States (...) for adults with ASD were marked by high unemployment rates, a reliance on families to provide care across the lifespan, high turnover rates in front-line service providers, insufficient transition planning for high school students, and generally insufficient services to meet current needs. In a recent Agency for Healthcare Research and Quality (AHRQ) Comparative Effectiveness Review, the authors similarly found that there is very little evidence available to pinpoint specific intervention approaches for adolescents and young adults with ASD due to a lack of good quality studies. This was especially true for evidence-based approaches to support the transition of youth with ASD to adulthood (Taylor et al., 2012a).For the last decade, with dramatic increases in both ASD awareness and estimates of ASD prevalence, our field has understandably focused intensely on improving early detection and treatment of ASD. Our diagnostic tools and understanding of ASD presentation in very young children has improved tremendously. Different from many of the young adults in these stories, who were often diagnosed in their early teens, we now aim to identify children well before their third birthdays. Research has consistently shown that early and intense ASD-specific intervention can dramatically enhance outcomes for children with ASD. As such, there has been heavy investment in attempting to take full advantage of this early window of neuro-plasticity. However, as these stories illustrate, these children grow up. Their needs change, and our systems are often poorly equipped to help them live fulfilling lives, capitalize on their talents, and obtain independence and equal access, while still providing a safe, supportive environment. Without readily accessible and understandable coordinated systems of care, parents are forced to adopt the multiple roles of case manager, teacher, therapist, community educator, advocate, job coach, housing specialist, financial planner, and often, lifelong caregiver. These stories eloquently illustrate those struggles and successes.Grief and Joy: Opposite Sides of the Same Parenting CoinThe idea of grieving a diagnosis is controversial. Many of the writers seemed to feel conflicted about their grief responses and the validity of their feelings. Research shows that many families view the diagnostic process as extremely stressful (Siklos & [End Page 199] Kerns, 2005; Heiman, 2002). Feelings of sadness, anxiety, and depression are common at the point of diagnosis and may reemerge as milestones pass unmet. Families must modify the futures they imagined for their children and begin to envision new goals and dreams. Anonymous Three described this process when she wrote:Most children grow up, go to school, get jobs, move out of their parents’ home, etc. My husband and I have had to seriously consider how much of these are even possible for a young man with autism, even one who has a good number of functional life skills.Tasks of adolescence and adulthood such as starting high school, driving a car, and moving out of the house may be delayed and hard won if met. Raising a child with ASD appears to have particular challenges. Throughout this process, families begin to redefine what “success” means. Rather than ascribing to societal standards, they find joy in personal milestones. McDonald described the triumph of teaching his nephew to shake women’s hands instead of touching their hair, an important safety goal that took three months to accomplish. Each family thereby creates its own path.People outside of the family often do not understand the complicated interplay of love and obligation as well as the frustration and fulfillment that families experience. Just like any family, the parents of children with ASD describe many joys in addition to their struggles. They see their children’s strengths in a world that too often focuses on their weaknesses. Gifted with the everyday experience of their child’s development, they see past the necessity of a... (shrink)

BackgroundParents affected by cancer are confronted with challenges such as communicating with their children about the disease and dealing with changes in their parental role. Providing appropriate information could support affected parents and their children. Still, high-quality and information booklets are rare. Therefore, we developed an information booklet for affected families. The study aims are: investigating the acceptability and usability of the information booklet, determining parental information needs, and collating suggestions for implementation. Finally, we adapted the booklet according (...) to the findings.MethodsWe interviewed five experts in psychosocial care of parental cancer and nine affected parents using a semi-structured interview guideline. Participants received the developed booklet after giving the consent to participate. Interviews on acceptability and usability of the booklet and information needs were conducted about 1 week after receiving the booklet. The interviews were analyzed using structuring content analysis.Results Experts and parents reported that the information booklet addresses the experiences of affected families and that the content combination makes it useful in an unprecedented way indicating both acceptance and usability. Following dimensions were identified as information needs: communication, support offers, children’s disease understanding and needs, organization of family life, competence in parenting, and sources of additional information material. The booklet should be handed out personally by, e.g., healthcare professionals and might be accompanied by a personal counseling. Minor adaptations on language and content were conducted based on the findings.ConclusionIndicated acceptance and usability of the developed information booklet for parents with cancer suggest a low-threshold, basic support for affected families and health professionals. The diverse parental information needs are covered. The long-term effects of the booklet, e.g., on the use of psychosocial support offers, parental self-efficacy and psychological distress will be quantitatively investigated. (shrink)

The aim of our study was to examine the familial risk of dyslexia in Year 1 school beginners, whose parents had been diagnosed as dyslexic or exhibited symptoms of the specific difficulties in reading and writing without a formal opinion issued by a counselling centre. We found that both a dyslexia report and specific reading and writing difficulties with no formal diagnosis manifested by a family member, and parents’ reading preferences, predicted the risk of dyslexia in Year 1 children. Moreover, (...) the children at familiar risk of dyslexia, as compared with their peers at no risk, later began to babble, were less apt at self-help and liked drawing less at the age of 2-3 years, and experienced more problems with drawing a circle at the age of 3. Additionally, during Year 1 of education, they performed poorer in fine motor skills, linguistic perception and sound deletion, visual functions and attention. Such symptoms can be observed by parents and teachers during the child’s play and educational activities. Early intervention can enhance the child’s readiness to school entry, and facilitate effective and satisfactory learning, increasing their further educational opportunities and the quality of life. (shrink)

There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent. In this questionnaire study of 2500 families in south-east Sweden we explored parents' (...) views on issues relating to information, consent and research data. We found that parents are generally positive about supplying their child with individual information and assuring the child's consent/assent to participation. However, parents' views vary regarding the extent to which children should influence research data: as many as 47–61% of our sample were opposed to children's rights to decide about the use and storage of biological samples and natural history data. Parents who are opposed to child consent and a wider influence on their research participation argue that parental authority and research quality are two important factors opposing enhanced child influence. Drawing on this, we underline the need to discuss how to balance children's rights against parental autonomy and research interests before implementing any standardized protocols granting children the right to consent and revoke data in long-term research. (shrink)

Is moral responsibility compatible with determinism? Peter Strawson’s first answer is: I do not know what the thesis of determinism is. His second answer seems to be: Yes, it is, and we can see this by looking to relevant pockets of our ordinary practices and attitudes, especially our responses (resentment, anger, love, forgiveness) to quality of will. His second answer has shaped subsequent discussions of moral responsibility. But what exactly is Strawson’s compatibilism? And is it a plausible view? By attending (...) to Strawson’s account of parenting and the development of moral agents from children to adults, I’ll clarify and defend the following account: For Strawson, the appropriateness conditions for holding responsible change by degrees, over time, based on an agent’s susceptibility to empathy and quality of will, and this shows us that determinism is irrelevant to responsibility. (shrink)

This study examined the patterns and characteristics of non-parental child care arrangements for Chinese very young children before they enter preschool and the extent to which families’ utilization of non-parental child care influenced parenting stress. A total of 3,842 Chinese parents of infants and toddlers were selected from 10 provinces to participate in this study. The results indicated that Chinese families relied heavily on grandparents to care for their children; a set of family demographics predicted the utilization of (...) non-parental child care arrangements, including parents’ educational level, household income, labor force participation, and maternal age; there existed a clear parental preference for publicly funded, affordable, and high-quality child care services; and families’ use of non-parental child care was generally not linked to parenting stress. These findings shed light on the development of the infant-toddler non-parental child care system in the Chinese sociocultural context. (shrink)

Information on the factors influencing parents’ decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities. Electronic searches of 13 databases were conducted. These searches were supplemented by hand-searching Google Scholar and bibliographies and citation tracing. Thomas and Harden’s thematic synthesis method was used to synthesise data (...) from identified studies. Twenty-four papers were identified and reviewed, but two papers were removed following quality assessment. Three main themes were identified through systematic synthesis. Theme 1, entitled ‘all life is precious’, described parents’ perception of the importance of the fetus’ life, a fatalistic view of their situation alongside moral implications as well as the implications decisions would have on their own life, in consideration of previous life experiences. Theme 2 contained two sub-themes which considered the parent’s own imagined future and the influence of other people’s experiences. Finally, Theme 3 presented three sub-themes which may influence their parental decision-making: These described parental consideration of the quality of life for their unborn child, the possibility of waiting to try for another pregnancy, and their own responsibilities and commitments. The first review to fully explore parental decision-making process following lethal, life-limiting, or severely debilitating prenatal diagnosis provided novel findings and insight into which factors influenced parents’ decision-making process. This comprehensive and systematic review provides greater understanding of the factors influential on decision-making, such as hope, morality and potential implications on their own and other’s quality of life, will enable professionals to facilitate supported decision-making, including greater knowledge of the variables likely to influence parental choices. (shrink)

Background: It is not known how neonatologists address the affective and cognitive loads on parents deciding whether to resuscitate infants born extremely preterm. This study explores expert neonatologists' views on these decision-making processes and their own roles in counseling parents. Methods: Semistructured interviews asked internationally recognized experts to share their perspectives on perinatal consultations. Their responses were subjected to thematic analysis. Results: Eighteen of 22 invited experts participated. Approximately equal numbers reported employing a physician-driven approach, a parent-driven approach, and a (...) combined approach during these consultations. Those who followed a physician-driven approach typically focused on conveying standard information about adverse outcomes. Those who followed a parent-driven approach typically focused on addressing parents' information requests, guiding their decision making, and providing affective support. Nearly all experts, in each group, endorsed addressing the child's quality of life, in terms of functionality, when discussing long-term outcomes. Although many believed that families adjusted to life with a disabled child, few discussed the topic during prenatal consultations. Most, in each group, reported trying to alleviate future “decisional regret” for parents whose premature infants subsequently became disabled. None spoke to parents about possible decisional regret after deciding to forgo resuscitation. Conclusions: Expert neonatologists are deeply concerned that parents understand the decision facing them. However, they differ on what information they offer and how they balance parents' need for cognitive and affective support. They expressed more concern about parents' decisional regret should their child survive resuscitation, but have severe disability, than about decisional regret after foregoing resuscitation. (shrink)

Parental investment decisions guide parental actions regarding children’s productive work and are shaped by ecological context. Urban ecology enhances long-term payoffs to investment in human capital, increasing opportunity costs for work performed by children, and decreased workload should result. Using an embodied capital framework, self-reported data on urban and rural Indo-Fijian children’s work activities are compared. Results show higher workloads for older children, rural children, and girls. High scholastic achievement is associated with lower workloads for girls, but not (...) boys. This pattern is interpreted as daughter-biased investment in the context of urbanization. (shrink)

Background:The ability to save the life of an extremely premature baby has increased substantially over the last decade. This survival, however, can be associated with unfavourable outcomes for both baby and family. Questions are now being asked about quality of life for survivors of extreme prematurity. Quality of life is rightly deemed to be an important consideration in high technology neonatal care; yet, it is notoriously difficult to determine or predict. How does one define and operationalise what is considered to (...) be in the best interest of a surviving extremely premature baby, especially when the full extent of the outcomes might not be known for several years?Research question:The research investigates the caregiving dilemmas often faced by neonatal nurses when caring for extremely premature babies. This article explores the issues arising for neonatal nurses when they considered the philosophical and ethical questions about quality of life in babies ≤24 weeks gestation.Participants:Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia.Ethical considerations:Ethical processes and procedures have been adhered to by the researchers.Findings:A qualitative approach was used to analyse the data. The theme ‘difficult choices’ was generated which comprised three sub-themes: ‘damaged through survival’, ‘the importance of the brain’ and ‘families are important’. The results show that neonatal nurses believed that quality of life was an important consideration; yet they experienced significant inner conflict and uncertainty when asked to define or suggest specific elements of quality of life, or to suggest how it might be determined. It was even more difficult for the nurses to say when an extremely premature baby’s life possessed quality. Their previous clinical and personal experiences led the nurses to believe that the quality of the family’s life was important, and possibly more so than the quality of life of the surviving baby. This finding contrasts markedly with much of the existing literature in this field.Conclusion:Quality of life for extremely premature babies was an important consideration for neonatal nurses; however, they experienced difficulty deciding how to operationalise such considerations in their everyday clinical practice. (shrink)

A growing body of research has suggested that high levels of family functioning—often measured as positive parent–child communication and low levels of parental stress—are associated with stronger cognitive development, higher levels of school engagement, and more successful peer relations as youth age. The COVID-19 pandemic has brought tremendous disruption to various aspects of daily life, especially for parents of young children, ages 3–5, who face isolation, disconnection, and unprecedented changes to how they engage and socialize. Fortunately, both youth and (...) parent brains are plastic and receptive to change. Resilience research shows that factors such as engaging in acts of kindness, developing trusting relationships, and responding compassionately to the feelings of others can help lay new neural pathways and improve quality of life. Yet, little research has investigated the effects of brain healthy parental practices of kindness with pre-school aged children. The current study examines whether an interactive, parent–child kindness curriculum can serve as a potentiator for brain health as measured by resilience and child empathy levels. During a peak of the pandemic, mother participants between the ages of 26–46 completed questionnaires on parental resilience levels and parent-reported child empathic pro-social behaviors before and after engaging in a 4 weeks online, self-paced, kindness curriculum. Half of the group received additional brain health education explaining the principles of neuroplasticity, empathy, perspective taking, and resiliency. Mothers in both groups showed increased resilience and reported higher levels of empathic behavior in their child after completing the curriculum. There was no significant difference between groups. Comparison of mean resilience levels during COVID-19 to pre-pandemic general means indicated that mothers are reporting significantly lower levels of resilience as well as decreased empathetic behaviors in their children. These results support the notion that kindness is a powerful brain health booster that can increase resilience and empathy. This research study was timely and relevant for parents in light of the myriad of stresses brought about by the ongoing COVID-19 pandemic. There are broader public health implications for equipping individuals with tools to take a proactive and preventative approach to their brain health. (shrink)

Research involving transgender and gender diverse people (TGD) increased in the last years, mostly concerning healthcare associated to this population. Few studies dedicated their analysis to the impact of parental support on transgender people, even though this is an important aspect in creating a safe environment on which these individuals can build their identity. In addition, the link between family support, TGD identity and homelessness is not completely established. Thus, due to the specificities of the family context of TGD (...) individuals, the aim of this study is to investigate the association between family support and TGD in different moments of the process of gender affirmation. In addition, this study also aims to explore the relationship between a lack of social support and low self-esteem, home abandonment, and dwelling in the street. The survey was designed based on the TransPULSE project and was made available in electronic format. The sample was constituted of 423 TGD residents in two Brazilian states. A Structural Equation Model analysis suggested that the impact of gender affirmation status on homelessness was mediated by parental support, through self-esteem, and the need to move from home. The association between the status of the gender affirmation procedures, family support and self-esteem was significant and indicated that the further TGD individuals advanced in gender affirmation, the more self-esteem and family support they would have. The association between family support and self-esteem indicated that family support was associated with higher self-esteem. Low family support was associated with the willingness to move from home due to one’s TGD status and there was also a significant correlation between low self-esteem and the willingness to move from home due to one’s TGD status. Finally, homelessness was associated with the willingness to move with a large effect size. Limitations include the sample that was constituted by individuals with Internet access and who had more contact with TGD communities. The findings indicate directions for interventions involving TGD people and their families, considering the parental relationship as a critical variable to improve TGD quality of life in the process of gender affirmation. (shrink)

Background:More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking.Aim:This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research.Method:A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. (...) The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The ‘SPIDER’ eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized.Ethical consideration:Ethical requirements were respected in every phase of the research process.Findings:Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children’s caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development.Discussion:Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed.Conclusion:Caring for ageing parents is a continuous quest for giving the best possible care and living up to one’s personal values, within the context of the parent’s declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with. (shrink)

There is an increased focus on, and evidence of, children's capability to both understand and make decisions about issues relating to participation in medical research. At the same time there are divergent ideas of when, how and to what extent children should be allowed to decide for themselves. Furthermore, little is known about parents' views on these matters, an important issue since they often provide the formal consent. In this questionnaire study of 2500 families in south-east Sweden (with and without (...) research experience) we explored parents' views on issues relating to information, consent and research data. We found that parents are generally positive about supplying their child with individual information (93.3%; median age 7) and assuring the child's consent/assent to participation (74.3%; median age 12). However, parents' views vary regarding the extent to which children should influence research data: as many as 47–61% of our sample were opposed to children's rights to decide about the use and storage of biological samples and natural history data. Parents who are opposed to child consent and a wider influence on their research participation argue that parental authority and research quality are two important factors opposing enhanced child influence. Drawing on this, we underline the need to discuss how to balance children's rights against parental autonomy and research interests before implementing any standardized protocols granting children the right to consent and revoke data in long-term research. (shrink)

It is now a common opinion in Western countries that a child's impairment would probably place an unexpected burden on her parents, a burden that the parents have not committed themselves to dealing with. Therefore, selective abortion is in general a morally justified option for the parents. I argue that this view is based on biased information about the quality of life of individuals with impairments and their families. Also, a conscious decision to procreate should bring about conscious assent to (...) assuming obligations as a parent. This implies a duty of caring for any kind of child. Consequently, if the child's condition is not such that it would make its life not worth living, and if the parents live in an environment where they are able to provide their child and themselves an adequate well-being, they do not have a morally sufficient reason to terminate the pregnancy on the grounds of fetal abnormality. (shrink)

BackgroundInformed consent is an ethical and legal requirement for research involving human participants. However, few studies have evaluated the process, particularly in Africa.Participants in a case control study designed to identify correlates of immune protection against tuberculosis (TB) in South Africa. This study was in turn nested in a large TB vaccine efficacy trial.The aim of the study was to evaluate the quality of consent in the case control study, and to identify factors that may influence the quality of consent.Cross-sectional (...) study conducted over a 4 month period.MethodsConsent was obtained from parents of trial participants. These parents were asked to complete a questionnaire that contained questions about the key elements of informed consent (voluntary participation, confidentiality, the main risks and benefits, etc.). The recall (success in selecting the correct answers) and understanding (correctness of interpretation of statements presented) were measured.ResultsThe majority of the 192 subjects interviewed obtained scores greater than 75% for both the recall and understanding sections. The median score for recall was 66%; interquartile range (IQR) = 55%–77% and for understanding 75% (IQR = 50%–87%). Most (79%) were aware of the risks and 64% knew that they participated voluntarily. Participants who had completed Grade 7 at school and higher were more likely (OR = 4.94; 95% CI = 1.57 – 15.55) to obtain scores greater than 75% for recall than those who did not. Participants who were consented by professional nurses who had worked for more than two years in research were also more likely (OR = 2.62; 95% CI = 1.35–5.07) to obtain such scores for recall than those who were not.ConclusionNotwithstanding the constraints in a developing country, in a population with low levels of literacy and education, the quality of informed consent found in this study could be considered as building blocks for establishing acceptable standards for public health research. Education level of respondents and experience of research staff taking the consent were associated with good quality informed consent. (shrink)

The ethics of advertising to children has been identified as one of the most important topics worthy of academic research in the marketing field. A fast growing advertising technique is product placement, and its use in children's films is becoming more and more common. The limited evidence existing suggests that product placements are especially potent in their effects upon children. Yet regulations regarding placements targeted at children are virtually non-existent, with advertising guidelines suggesting that it remains the prime responsibility of (...) the parents to provide guidance for children. This study measured the ethical evaluations of parents in the UK and Canada regarding product placements in children's films. After exposing parents to a four-type typology of product placements, results show that explicit placements of ethically charged products were perceived as the most unethical type of placements. Parents in the UK were more sensitive to the use of the technique and there was a significant difference in relativism between the two groups. Both sets of respondents would like to see more regulation on the use of placements, especially placements of alcohol, tobacco and fast foods. (shrink)