Reflections on Identity in Memoirs of Writers With Aphasia: Lessons Learned on the Path Toward Recovery

Personal stories provide insight into the experience of illness as it intersects with one’s identity. Prior studies by the first author examined identity as manifested in personal accounts of U.S. World War II veterans with and without dementia. The current study examines identity as revealed through written memoirs of middle-aged and older adults who have aphasia, from a cross-section of North American, European, and Australian cultures. The abrupt onset of stroke and associated aphasia, and the subsequent path toward re-engagement in life with an often-chronic communicative impairment, provide a unique window into the nature and evolution of the identity of the writer. The written modality offers an opportunity for reflective formulation that is not afforded to the memoir-writers in their verbal expression. Nineteen memoirs and biographical accounts of individuals with aphasia from a range of primarily individualistic cultures were examined for content reflective of the identity of the author, focused on post-stroke phases of restitution and quest. Primary authors were people with aphasia or rarely their close family member. Some were professional editors, poets or authors. Gender and life backgrounds were varietal. Manifestations of personal identity, its reinforcement, and its evolution were evidenced in: the provision of lessons learned from living with aphasia; content of letters exchanged with friends; engagement with family in life and recovery; fictional and poetic expression; spiritual insight; renewed or altered occupational pursuits; and comments on facing one’s mortality. Findings hold implications for the cross-cultural practice of narrative medicine with the older adult population.

Bosnian voices from the bottom of the well: Genocide, war crimes, and crimes against humanity and victims’ right to remedies

Human rights advocates call for reparation as an important step to acknowledge and repair historical injustice and mass harms. In Bosnia and Herzegovina, victims of war continue to seek monetary reparation for non-pecuniary damages caused by genocide: murder, injury to human body and dignity, and harms inflicted upon a close family member. They seek legal remedies using national, foreign, and international human rights judicial venues. Drawing from qualitative, ethnographic research data and archival documents, the article examines legal claims and public discourse regarding reparation and makes a case for a reconceptualization of reparation by including victim voices. The article concludes that despite being absent from the post-conflict victims’ reparation programs in Bosnia and Herzegovina, monetary reparation has assumed a social valuation attribute. On the one hand, it is a victim’s call for retributive, legal conceptions of justice – that someone who escaped international and national criminal justice programs pays. On the other hand, it is a tool to draw attention to Bosnian victims’ present civil and political exclusions that came with the international post-conflict peace treaty. While the post-war reconstruction focused on international trials, democratization, restorative justice, and state building programs, it also restricted socio-economic and cultural rights by redefining the citizenship and dismantling the welfare state. Reparation is a debt owed to victims.

Resilience of Adolescents Survivors of Domestic Violence: A Qualitative Study

BACKGROUND: The ability of adolescents to overcome the impact of domestic violence and reflect on the achievements is a form of resilience. AIM: The study explored an in-depth description of the discovery process of the resilience ability in adolescent survivors of domestic violence. METHODS: This qualitative research with a descriptive phenomenology approach interviewed seven adolescent survivors between the ages of 15 and 21. In-depth interviews were conducted, and demographic data were collected. Interviews were transcribed and coded thematically. Data was analyzed with the method of Colaizzi. RESULTS: Four themes were derived from the interviews, including painful words from the close family member as a form of intimidation; the emotional response as imprinted feeling caused by the domestic violence; self-struggle starts from their own; and the happiness of the close family member as the purpose of life. CONCLUSION: Adolescents responses to domestic violence cause mental health problems, however, they also manage to overcome problems, fulfill goals, and review their past and current life events to achieve life's purpose.

RBL1/p107 Expression Levels Are Modulated by Multiple Signaling Pathways

The members of the retinoblastoma (RB) protein family, RB1/p105, retinoblastoma-like (RBL)1/p107 and RBL2/p130 are critical modulators of the cell cycle and their dysregulation has been associated with tumor initiation and progression. The activity of RB proteins is regulated by numerous pathways including oncogenic signaling, but the molecular mechanisms of these functional interactions are not fully defined. We previously demonstrated that RBL2/p130 is a direct target of AKT and it is a key mediator of the apoptotic process induced by AKT inhibition. Here we demonstrated that RBL1/p107 levels are only minorly modulated by the AKT signaling pathway. In contrast, we discovered that RBL1/p107 levels are regulated by multiple pathways linked directly or indirectly to Ca2+-dependent signaling. Inhibition of the multifunctional calcium/calmodulin-dependent kinases (CaMKs) significantly reduced RBL1/p107 expression levels and phosphorylation, increased RBL1/p107 nuclear localization and led to cell cycle arrest in G0/G1. Targeting the Ca2+-dependent endopeptidase calpain stabilized RBL1/p107 levels and counteracted the reduction of RBL1/p107 levels associated with CaMKs inhibition. Thus, these novel observations suggest a complex regulation of RBL1/p107 expression involving different components of signaling pathways controlled by Ca2+ levels, including CaMKs and calpain, pointing out a significant difference with the mechanisms modulating the close family member RBL2/p130.

Interplay between the EMT transcription factors ZEB1 and ZEB2 regulates hematopoietic stem and progenitor cell differentiation and hematopoietic lineage fidelity

The ZEB2 transcription factor has been demonstrated to play important roles in hematopoiesis and leukemic transformation. ZEB1 is a close family member of ZEB2 but has remained more enigmatic concerning its roles in hematopoiesis. Here, we show using conditional loss-of-function approaches and bone marrow (BM) reconstitution experiments that ZEB1 plays a cell-autonomous role in hematopoietic lineage differentiation, particularly as a positive regulator of monocyte development in addition to its previously reported important role in T-cell differentiation. Analysis of existing single-cell (sc) RNA sequencing (RNA-seq) data of early hematopoiesis has revealed distinctive expression differences between Zeb1 and Zeb2 in hematopoietic stem and progenitor cell (HSPC) differentiation, with Zeb2 being more highly and broadly expressed than Zeb1 except at a key transition point (short-term HSC [ST-HSC]➔MPP1), whereby Zeb1 appears to be the dominantly expressed family member. Inducible genetic inactivation of both Zeb1 and Zeb2 using a tamoxifen-inducible Cre-mediated approach leads to acute BM failure at this transition point with increased long-term and short-term hematopoietic stem cell numbers and an accompanying decrease in all hematopoietic lineage differentiation. Bioinformatics analysis of RNA-seq data has revealed that ZEB2 acts predominantly as a transcriptional repressor involved in restraining mature hematopoietic lineage gene expression programs from being expressed too early in HSPCs. ZEB1 appears to fine-tune this repressive role during hematopoiesis to ensure hematopoietic lineage fidelity. Analysis of Rosa26 locus–based transgenic models has revealed that Zeb1 as well as Zeb2 cDNA-based overexpression within the hematopoietic system can drive extramedullary hematopoiesis/splenomegaly and enhance monocyte development. Finally, inactivation of Zeb2 alone or Zeb1/2 together was found to enhance survival in secondary MLL-AF9 acute myeloid leukemia (AML) models attesting to the oncogenic role of ZEB1/2 in AML.

Lifting dyspnoea invisibility: COVID-19 face masks, the experience of breathing discomfort, and improved lung health perception — a French nationwide survey

Question addressedIn contrast with pain, dyspnoea is not visible to the general public who lack the corresponding experiential baggage. We tested the hypotheses that the generalised use of face masks to fight SARS-CoV2 dissemination could change this and sensitise people to respiratory health.MethodsGeneral population polling (1012-person panel demographically representative of the adult French population –quota sampling method–; 517 women, 51%). 860 (85%) answered “no” to “treated for a chronic respiratory disease” (“respiratory healthy”, RH) and 152 “yes” (“respiratory disease”, RD). 14% of RH respondents reported having a close family member treated for a chronic respiratory disease (RH-family+ and RH-family−). Respondents described mask-related attitudes, beliefs, inconveniencies, dyspnoea, and changes in their respiratory health vision.ResultsCompliance with masks was high (94.7%). Dyspnoea ranked first among mask inconveniencies (RD 79.3%, RH 67.3%, p=0.013). “Air hunger” was the main sensory dyspnoea descriptor. Mask-related dyspnoea was independently associated with belonging to RH-family+ (Odds Ratio [OR] [95% confidence interval (CI)]: 1.85 [1.16–2.98]) and removing masks to improve breathing (OR 5.21 [3.73–7.28]). It was negatively associated with considering masks effective to protect others (OR]: 0.42 [0.25–0.75]). Half the respondents were more concerned with their respiratory health since wearing masks; 41% reported better understanding patients’ experiences.Answer to the questionWearing protective face masks leads to the mass discovery of breathing discomfort. It raises the public's awareness of what respiratory diseases involve and sensitises to the importance of breathing. These data should be used as the fulcrum of respiratory-health-oriented communication actions.

Involving children and families when someone important is dying or has died

The untimely death of a close family member is one of the most challenging events for families including children. This chapter discusses how a basic knowledge of child development and the ways that children understand illness and death can provide a template from which to inform families about how to help their children during this time and into bereavement. It addresses such topics as how children understand death at different ages, timing of discussions with children, decisions about the setting for end of life care and death in a family context, visiting the ill person, legacy leaving, and children’s participation in funerals and memorial services. By supporting families to anticipate common situations and questions, health and social care professionals can work with surviving adults to use their own (and the child’s) resources to provide thoughtful and meaningful care for children during this difficult time. This support encourages adults to include and involve children, using honest, child-centred communication during the illness period, at the end of life phase, at the time of death, and after death. Such communication is crucial for ongoing bereavement and family functioning.

Bereavement

Most families do not expect to bury a child. Adults expect to die before their children, certainly before their grandchildren. Yet every year parents face the enormous grief of having their child die and many young people experience the death of their sibling. This chapter discusses the impact of a child’s death on families, adults, and children, and describes interventions, based on theory, that may help bereaved families. Although unimaginable, most children and their families will cope with the death of a close family member, especially if they can express their feelings and thoughts, if the family can talk about what is happening and about their memories of the deceased, and if they have the opportunity to meet others who have been bereaved.

Prevalence and correlates of suicidal behaviour among adults in Malawi: a nationally representative cross-sectional survey in 2017

Background The study aimed to assess the prevalence and associated factors of suicidal behaviour (SB) among adults in Malawi. Methods Data were analysed from 4187 persons aged 18–69 years (median age: 32 years) that took part in the nationally representative cross-sectional “2017 Malawi STEPS survey.” Results The prevalence of ever suicide attempt was 0.8%, and the prevalence of SB (ideation, plan and/or attempt) in the past year was 7.9% (6.0% among men and 9.6% among women). In adjusted logistic regression analysis, among men, being 30 years and older and having an alcohol family problem were positively and obesity was negatively associated with SB in the past year. Moreover, in univariate analysis, early smoking initiation was positively and not using active transportation was negatively associated with SB in the past year. Among women, having an alcohol family problem, death from suicide of a close family member, having a cardiovascular incident (heart attack, stroke, or angina) and not using active transportation increased the odds of SB in the past year. In addition, in univariate analysis, low systolic blood pressure (< 100 mmHg), not taking antihypertensive medication, and current alcohol use were associated with past year SB. Conclusion Almost one in ten participants engaged in SB in the past year and several associated factors were identified that can inform intervention programmes.

Family members’ attitudes towards disclosure of cancer diagnosis to patients in China.

12131 Background: Informed consent is very important aspect of treatment, in western countries, a diagnosis of malignancy should be delivered the paient directly. It was the decision of the patient for further disclosure. However, in China, people are always family centered decision making, a diagnosis of cancer is traditionally delivered to the family members, with a protective assumption. We used anonymized questionnaire to investigate the attitude of Chinese people towards to cancer diagnosis disclosure and correlated factors. Methods: This is a survey study conducted by a web system named “Wenjuan Xing”. The study questionnaires were designed in dual English and Chinese. answered by the same person. The regarding questions that answered by the same person are as following: “If your close family member is diagnosed with a malignant tumor, would you like to tell him the truth?”, “If yes/no, what’s your reason?”. Demographic information include gender, age, economic status, education level, health condition, residential region, occupation, nationality and major reasons. The survey link was placed on Wechat contact of these investigators, social media and also distributed in Oncology Center of a general hospital in Mainland China. The answers of the questions were captured directly online, data can also be exported into excel format for compiled analysis. Results: A total of 1470 people completed the survey questions from January to July 2020. The potential factors which influence disclosing diagnosis were registered, 1041 (70.8%) family members are in favor of informing the diagnosis to patients, 429 (29.2%) are not. The main reasons for disclosure diagnosis are ‘it is his or her life, he/she has to be in control’ (N=832) and she or he can plan his/her remaining life and leave the world with no regret (N=588). The famliy member who hide the diagnosis worry that paitents could not handle the stress would have poor quality of life (N=295) and die faster(N=323). 1425(96.9%) people want to know the diagnosis if they have a malignanti tumor, while 45 (3.1%) don’t want to know.The univariate analysis revealed educational level, health condition and residential region are correlated to disclosing diagnosis. The logistic regression anaylsis show a significant effort to disclosing diagnosis(OR= 1.9, 95% CI (1.4, 2.7) P<0.001).Interaction and stratified analyses were conducted according to education level and redidential region (P interaction= 0.0406). In the high education level group, people who live in other countries(America, Europe) (P=0.009 OR=29.7 CI 2.3-375.7) more likely to disclose the diagnosis compared to mainland in China. Conclusions: The majority of Chinese people want to know the diagnosis. People who have higher education level and live in western countries more likely prefer disclosure of diagnosis to patients.