The study explored how young adults with cancer create a cancer identity across the illness trajectory. Young adults with hematological cancers ( n = 53, ages 20–39) completed a semi-structured interview and brief questionnaire. Deductive thematic analysis was used to code interviews. Four identity categories (Acceptance, Enrichment, Engulfment, and Rejection) were coded and linked to the cancer stage (pre-treatment, active treatment, post-treatment). Pre-treatment, there was minimal expression about identity. Acceptance during active treatment involved identity work around disclosure and the integration of pre-cancer identity with the treatment experience. Post-treatment, acceptance involved actively making sense of the cancer experience and its long-term impact; Enrichment was more frequent post-treatment. Engulfment was expressed most during treatment. Individuals who remained engulfed post-treatment expressed difficulties moving beyond the patient’s identity. Rejection of a cancer identity was rarely expressed. Understanding how young adults integrate the cancer experience into their identity may suggest intervention strategies.
Abstract: Traumatic childbirth can have wide-ranging consequences for birthing individuals. Data were obtained from a large-scale ( N = 1,210) online survey of perinatal experiences in the United States. Utilizing a Reproductive Justice framework, we analyzed open-ended responses regarding the most difficult aspects of pregnancy and childbirth from 54 participants who solely identified their births as traumatic. We identified the following themes: Mental and Emotional Toll; The Toll of Relentless Work Expectations; The Embodied Toll; Complications and Interventions; Loss of Control: Bodily Autonomy; and Loss of Control: Interactions with Medical Systems and Professionals. Results underscore the inadequacy of perinatal support in the United States, highlighting the imperative to address policy and research to advance the UN Sustainable Development Goals of Good Health and Wellbeing and Gender Equality.
Background There are ongoing changes around the world in the training and practice of pediatricians who work in the community. These changes are driven by the understanding that pediatricians are required to provide not only acute primary care but also to address more comprehensive concerns, particularly the ‘new morbidities’. The present study examines the professional identity of Israeli pediatricians in the community in light of these changes, the barriers and challenges to their work and professional adaptations in the field. Methods We used a mixed-methods approach, collecting the perspectives of 137 pediatricians who work in the community through an anonymous online survey, followed by in-depth semi-structured interviews with 11 community pediatricians. Results The survey results show that community pediatricians in Israel have limited knowledge on a variety of developmental, behavioral and emotional issues; that they lack working relationships with medical or other professionals; and are rarely engaged with other community services. Three main themes arose from the interviews that support and deepen the survey results: perceptions of the profession (pediatrics in the community vs. community pediatrics), the stature of pediatricians in the community (during residency, the choice to work in the community, their daily work) and barriers and change in community pediatrics (isolation, limited resources and challenges arising from the nature of community work). Conclusions The present study sheds light on the professional identity and the day-to-day challenges and successes of pediatricians working in the community. Continuing medical education, providing a supportive framework and professional community, better resources, more time with patients, and tools and opportunities for professional development would help pediatricians who work in the community to overcome some of these challenges. The research findings reinforce the need for policy change in the field of community pediatrics with a specific community training curriculum, provision of more resources and ongoing support for pediatricians. This requires partnership between the HMOs, the Ministry of Health, the Scientific Council (Israel Medical Association, professional organizations) and NGOs in order to turn individual-level solutions into system-level and policy-changing solutions.
This review provides an overview of patient experiences of endometriosis, endometriosis-related types and sources of stigma pertaining to menstruation, chronic pain, and infertility, and their impact on patients’ mental health with particular implications for patient care. Because endometriosis is a complex disease with multifactorial etiology, complicated pathophysiology, and a spectrum of clinical features, diagnosis of endometriosis is typically a lengthy process, and many patients experience initial misdiagnosis. A hallmark symptom is severe menstrual pain with other symptoms including chronic pelvic pain, dysmenorrhea, and infertility. Prior research documents that the diagnostic odyssey, complex management, disabling and unpredictable nature of the disease, and painful symptom profile affect multiple life domains of patients, resulting in poor physical, social, and psychological functioning and clinically-significant rates of anxiety and depression for many. More recently, stigma has been recognized as a potent contributor to poor mental health in endometriosis patients, but existing research is limited and largely atheoretical. We identify major sources of stigma related to endometriosis, including menstrual stigma, chronic pain stigma, and infertility stigma, and their likely impact on patients and health care provision. An integrative theoretical approach is described to facilitate research on the prevalence and effects of endometriosis stigma and their explanatory mechanisms, highlighting specific well-validated psychological instruments to assess stigma. Implications for patient care are emphasized. Better understanding of stigma and mental health in people with endometriosis will enhance the standard of care for this patient population.
One form of support-seeking behavior can be found in online communities, spaces for users to read and share in their own words. We sought to understand how members of "r/PMDD," an online community focused on premenstrual dysphoric disorder (PMDD), interface with others by posting information, sharing personal narratives, and asking for advice. Top posts were analyzed using thematic decomposition, and four major themes emerged: (1) construction of PMDD as an "other" self-state, (2) diagnosis as complicated, (3) online camaraderie, and (4) agency gained through knowledge. Findings highlight both the ways in which premenstrual distress remains stigmatized and misunderstood within social and medical realms, as well as the important role that online communities can play to fill in the gaps of social support and information-sharing.
In the United States, pregnant people considering a vaginal birth after cesarean delivery (VBAC) face this decision in a highly contested environment where VBAC is simultaneously encouraged—situated within discourses promoting vaginal birth—and discouraged through discourses emphasizing reproductive risk. Woven through these competing discourses is a shared emphasis on maternal responsibility, reflective of a socially constructed belief that birth method is bound implicitly to one's “goodness” as a mother. This paper employs a discursive analytic lens to examine the experiences of 16 pregnant people in New York City seeking VBACs for their upcoming births. We examine how sociocultural discourses of “responsible” mothering shape participants’ experiences of considering VBAC and examine participants’ anxieties over VBAC and its attainability in light of their past birth experiences. Our analysis demonstrates that participants reproduce discourses privileging vaginal birth, and simultaneously challenge these discourses by invoking an “embodied knowledge” that enables them to assert themselves as responsible mothers in the context of past cesarean deliveries and uncertainty surrounding their upcoming births. Implications are discussed in the context of existing literature on birth and discourses of maternal responsibility.
BACKGROUND:Resource trade-off theory suggests that increased performance on a given trait comes at the cost of decreased performance on other traits. METHODS:Growth data from 1889 subjects (996 girls) were used from the GrowUp1974 Gothenburg study. Energy Trade-Off (ETO) between height and weight for individuals with extreme body types was characterized using a novel ETO-Score (ETOS). Four extreme body types were defined based on height and ETOI at early adulthood: tall-slender, short-stout, short-slender, and tall-stout; their growth trajectories assessed from ages 0.5-17.5 years.A GWAS using UK BioBank data was conducted to identify gene variants associated with height, BMI, and for the first time with ETOS. RESULTS:Height and ETOS trajectories show a two-hit pattern with profound changes during early infancy and at puberty for tall-slender and short-stout body types. Several loci (including FTO, ADCY3, GDF5, ) and pathways were identified by GWAS as being highly associated with ETOS. The most strongly associated pathways were related to "extracellular matrix," "signal transduction," "chromatin organization," and "energy metabolism." CONCLUSIONS:ETOS represents a novel anthropometric trait with utility in describing body types. We discovered the multiple genomic loci and pathways probably involved in energy trade-off.
Abstract Objectives Birthweight is often used as an indicator of fetal health. Categorization of infants as small or large for gestational age has clinical significance. Due to growth differences between countries, it is important to have local reference data. The aim of the study was to describe an Israel population-based reference of birthweight by gestational age stratified for singletons/multiple births and gender. Methods Data on birthweight and gestational age were obtained for the years 2010–2019 from the Ministry of Health Birth Registry. Implausible birthweight and gestational age values were excluded in a two step process. First, overtly implausible values were excluded using visual mapping. Then, infants whose birthweight was below or above the fifth interquartile range for each completed week were excluded. Results During the 10-year period there were 1,761,884 infants delivered in Israel; 1,689,696 were included in the analysis. 4.4% of the live born infants were from multiple births. The mean birthweight of singletons (3251 g) was 947 ± 4 g higher than that of multiples (2304 g). The birthweight of the male multiple births began to differ from that of the singletons at 30 weeks; female multiple births began to deviate at 31 weeks. The increase in birthweight of singletons leveled after 42 weeks and those born after 43 weeks weighed less than infants born earlier. Comparison of the curves for singletons from the present study to those reported for the years 1993–2001 reveal a similar median but significant differences in the distribution of lower and higher percentiles. Conclusions Improved data collection and validation permitted inclusion of 96% of births for analysis. Use of interquartile range distribution to exclude values of birthweight/gestational age that were implausible improved validity. Compared to curves reported previously, changes were found in the distribution of birthweights for the upper and lower percentiles. Periodic updates of growth curve references are important.
This study examined perspectives on the ethical implications of preimplantation genetic testing (PGT) among individuals who actually (not hypothetically) used or considered using PGT. Most of the prior patient-centered research on PGT ethics used qualitative designs (9 out of the 11 articles) and focused only on single gene testing. This cross-sectional study used an anonymous online questionnaire; 15 items assessed potential ethical concerns involved in PGT decision-making, including clinical indications for PGT, the greater implications of PGT for society, and unused embryo disposition. N = 207 individuals (mean female/male age 35.7/38.9 years, 21% Hispanic or non-White) who had recently used or considered using PGT for single gene (60%) or for chromosomal testing (40%) completed the questionnaire. Most respondents supported PGT screening for disease conditions with childhood or adult onset that are untreatable (64%-85% across items); most opposed PGT for trait selection (76%-81%). Most respondents agreed that PGT aids in parental decision-making (66%-67%), although some expressed concern over potential unforeseen consequences (25%-30%). Regarding disposition of embryos without known genetic abnormalities, most respondents favored freezing indefinitely (86%) or donating to another family (69%), while for embryos with genetic abnormalities, most respondents favored donating to research (78%) or destroying them (62%). Stratification by religious affiliation revealed several differences, such as less acceptance of PGT for diseases that occur in adulthood and have no treatment options among Protestants (p = .015) and greater willingness to donate surplus embryos to research among participants without a religious affiliation (p < .001). These results are limited by the relatively homogeneous sample of participants (mostly White, married, and predominantly college-educated). In summary, participants who considered/used PGT found PGT acceptable overall for screening for disease conditions; most opposed using PGT for trait selection. Our novel questionnaire provides a structured tool for assessing the ethical perspectives surrounding the use of PGT.
Health Exercise Nutrition for the Really Young (HENRY) is a UK community-based early childhood obesity prevention intervention that was adopted and implemented in Israel between 2013 and 2018. The aim of this study was to explore the implementation process in Israel and compare it with that of the 'parent' programme in the UK, in order to throw light on the challenges of introducing complex interventions into different countries and cultures. Published reports from HENRY and Haifa University's evaluation of the Israeli implementation were reviewed and comparisons between the UK and Israel were carried out utilizing the RE-AIM framework. In both countries, the intention was to implement in lower SES communities. When comparing the individual items, Reach and Effectiveness, we found a difference in the Reach although Effectiveness was similar: Reach was proportionally lower in Israel, but parent and professional changes in behaviour were positive in both countries. For the organizational items Adoption, Implementation and Maintenance, we found large differences between the countries. Major challenges identified in Israel included: failing to take adequate account when planning and implementing the intervention of the different ways social and health services are organized and how local authorities are structured and provide services. In addition, differences in culture beyond language and professional variations were challenges, when trying to transfer the intervention with high fidelity from the UK to Israel. Lessons learnt may benefit others in attempting cross-country implementation of complex interventions
Background Data on growth of Israeli school children show that children from Jewish ultra-orthodox Haredi and Bedouin Arab families have a higher prevalence of stature below the 3rd percentile. While these populations are usually from lower socioeconomic strata, they also have larger families. This study aimed to evaluate if family structure and the timing of a child’s infancy–childhood transition (ICT) are central to variations in stature. Study Design We analyzed the association between family size, birth order and inter-birth interval with child growth and the age at ICT in 3 groups of children, 148 high birth order children from large families (LF ≥ 6), 118 low birth order children from large families (LF ≤ 3) and 150 children from small families (SF). Results High birth order children from large families were shorter in childhood than children from small families with a difference of 0.5 SDS in length. We found that birth length and birth order explained 35% of the total variance in infancy length whereas ICT age and infancy length explained 72% of the total variance in childhood length. Conclusion Infancy and childhood length are compromised in children from large families. As the family grows larger the younger children tend to be shorter. Reduced length gain in the period between infancy to childhood is when growth is most affected.
What are the ethical perspectives of preimplantation genetic testing in patients using/considering PGT-A compared to those using/considering PGT-M? A 17-item questionnaire administered online was used to assess ethical perspectives in US patients who recently used/considered PGT-A (n=80) vs. those who used/considered PGT-M (n=72). Kruskal-Wallis, Chi-square, and Fisher exact tests were conducted with STATA. Most PGT-A and PGT-M users/considerers supported using PGT to screen for diseases fatal in childhood (86–89%) and those causing lifelong disabilities (76–79%) and opposed using PGT to screen for non-medical physical (80–87%) or intellectual traits (74–86%). Both groups agreed that PGT aids in parental decision-making, although some expressed concern over its potential to lead to unforeseen consequences for society and the PGT offspring. More PGT-M than PGT-A users/considerers opposed implanting genetically abnormal embryos when requested by parents (29% PGT-A vs. 56% PGT-M, p = 0.007). For embryo disposition, more PGT-A users/considerers favored freezing (95% PGTA vs. 82% PGT-M, p = 0.018) or donating genetically normal embryos to research (73% PGT-A vs. 57% PGT-M, p = 0.044), while more PGT-M users/considerers supported donating embryos with known genetic abnormalities to research (56% PGT-A vs. 81% PGT-M, p = 0.001). Regardless of the reason for using PGT, users generally agreed on the acceptable and unacceptable uses for it, as well as the potential societal impact. PGT-M users/considerers expressed more opposition than PGT-A users/considerers to implanting embryos with a genetic alteration when requested by the parents.