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Introduction: Patients with higher-risk myelodysplastic syndromes (MDS) face considerable challenges in disease management and often require caregiver support. Reports on the burden of caring for patients with advanced cancer suggest that caregivers receive insufficient support. Our research aimed to identify key challenges for caregivers of patients with higher-risk MDS. Methods: Online bulletin board is a qualitative research methodology which enables data collection via a web-based platform. A mix of moderator-led discussion guide and interparticipant discussion provides the caregiver insights as online dialogue, which then undergo content analysis to extract key findings. Results: Sixteen caregivers participated from the USA (n = 5), UK (n = 6) and Canada (n = 5). Content analysis identified the caregiver experience in higher-risk MDS as multifactorial, with seven key categories of caregiver burden: caregiver role and burden, mental health, family dynamics, disease experience, treatment experience, healthcare professional (HCP) interactions and information and education. Conclusion: There is significant impact and burden on caregivers of patients with higher-risk MDS, which varies depending on disease stage, choice (or lack of choice) of treatments, and the personal situation of the caregiver. Emotional stress occurs mostly at diagnosis/prognosis stage and when told to 'watch and wait', which is amplified when HCPs are perceived to lack knowledge/expertise about MDS. There is a need for better education about MDS for HCPs, patients, caregivers and the general community; a need for improved communication between patients/caregivers and HCPs; and a high unmet need for better mental health and emotional support for both patient and caregiver. [ABSTRACT FROM AUTHOR]

This article explores the experiences of some Black South African families affected by international migration. Historically, emigration from South Africa has occurred in waves, and has been associated with specific political moments. Such migration has often been perceived as a predominantly "White phenomenon", but recent trends reveal a more complex picture. Prior research on Black migration has focused primarily on internal labour migration, exilic migration and the "brain drain" phenomenon of medical professionals. So far, little research has been done on the impact of international outward migration on the Black family system. This article addresses this gap, drawing on a larger qualitative project exploring the impact of South African emigration on elderly family members staying behind. The findings highlight the significance of close relational ties in the Black South African family system. Familial separation through emigration brings feelings of loss and apprehension for the wellbeing of family members living abroad, including potential racism in destination countries. Migrants abroad highlighted the value of family and of maintaining a Black South African identity, despite separation from the country of origin and the extended family. Significantly, migration is often perceived as a temporary state, in contrast to White South African counterparts. Given increased international migration, the results shed light on the interplay between racial identity and emigration, and the impact of international migration by Black South Africans on family that they leave behind. [ABSTRACT FROM AUTHOR]

Purpose: The current study examines the overlapping victimizations of sexual assault, sexual harassment, and stalking. Method: An online data collection platform was used to recruit participants and data analysis examined relationship abuse and stalking victimization experiences and victim harms (e.g., resource losses, negative identity perceptions, sexual autonomy, and current mental health symptoms) for ex-partner stalking victims who were sexually assaulted during the abusive relationship (n = 392) compared to ex-partner stalking victims who were not sexually assaulted during the relationship (n = 169). Results: Results found that over half of the women sexually assaulted during the relationship reported sexual assault while being stalked compared to a small proportion of women not sexually assaulted during the relationship. Sexual harassment experiences were pervasive regardless of relationship sexual assault victimization. However, women sexually assaulted during the relationship experienced increased coercive control, sexual harassment, resource losses, safety concerns, sexual difficulties, and current mental health symptoms than stalking victims who were not sexually assaulted during the relationship. Multivariate results found that younger age, higher safety efficacy, and fewer sexual difficulties were significantly associated with higher sexual autonomy while younger age, increased safety concerns, lower safety efficacy, increased resource losses, and increased sexual difficulties were significantly associated with increased recent PTSD and depression/anxiety symptoms. Conclusion: The current study results suggest that it is important to examine a wide scope of victim harms and that helping victims with safety planning in intimate relationships as well as to protect resource losses may be crucial for their recovery journey. [ABSTRACT FROM AUTHOR]

Little is known about the factors that influence engagement for adolescents participating in informal youth science programs. This study examined longitudinal reciprocal associations between adolescents' science engagement, interest, and growth mindset. Participants were adolescents (Mage = 15.06, SD = 1.82 years, 66.8% female) from the UK (n = 168) and the US (n = 299). A cross lagged path analysis indicated that participants' science growth mindset at baseline was positively related to interest, and engagement at year 1, and science interest at year 1 was positively related to growth mindset at year 2. Additionally, girls had lower science growth mindsets than boys. This evidence suggests that informal programs may encourage positive STEM trajectories by fostering engagement, growth mindset and interest. [ABSTRACT FROM AUTHOR]

This phenomenological study explored experiences of asexual identified persons within the context of relationships. Thirty-five asexual spectrum identified participants took part in semi-structured interviews that focused on how they viewed themselves and their uniquenesses within relationship dynamics. Queer theory guided the research design and analysis. Findings include a movement towards understanding and experiencing relationships that extend beyond heteronormativity. Themes included: (a) evolving asexual identity development, (b) conscious adapting and communication within relationships, (c) reconsidering amatonormativity, and (d) therapeutic recommendations. Participants identified that their relationships were distinctly different from social expectations; however, overall, partners adapted successfully to these differences with communication and understanding. Findings contribute to a greater competency in asexual identities. [ABSTRACT FROM AUTHOR]

Introduction: Treatment decisions in older adults with acute myeloid leukemia (AML) are challenging, particularly for those who are not candidates for intensive chemotherapy (IC), and the trade-offs patients, their families and physicians consider when choosing a treatment option are not well understood. This qualitative research explored the value of extending survival and the treatment decision-making process from a multi-stakeholder perspective. Methods: Overall, 28 patients with AML (≥ 65 years old, unsuitable for IC), 25 of their relatives and 10 independent physicians from the US, UK and Canada took part in one-on-one, 60-minute qualitative interviews. Results: Across all stakeholders, improved health-related quality of life (HRQoL), extended survival and relief of AML symptoms were recognized as most important in AML treatment decision-making. However, extending survival in 'good health' was more important than extending survival alone, particularly because of the extra time it gives patients and their relatives together, and allows patients to achieve important goals. Patients' limited understanding of available treatment options, paired with incorrect perceptions of treatment side effects, impacted their involvement in the treatment decision-making process. Patients and physicians perceived physicians to have the most influence in the decision-making process despite their priorities not always aligning. Conclusion: These findings illustrate the importance of having structured discussions which explicitly assess patients' goals and their understanding and expectations of treatments and also the need for patient friendly resources about the lived experience of AML and available treatment options. These measures will help to ensure that patients are fully involved in the shared decision-making process. [ABSTRACT FROM AUTHOR]

Background: The debilitating nature of migraine attacks is widely established; however, less is known about how the interictal burden (i.e., how patients are affected in-between migraine episodes) of migraine impacts on patients' health-related quality of life (HRQL). Acute and preventive treatments may lift the burden of the disease, but they often have unwanted side effects and limited effectiveness. The objective of this study was to understand the interictal burden of migraines, from the patient perspective, and to explore patient experience with migraine treatments. Methods: Participants (n=35) with a self-reported diagnosis of migraine were recruited in the US, UK and Canada, including a subgroup of patients who had taken calcitonin gene-related peptide monoclonal antibody (CGRP mAb) treatment for at least three months. Participants completed a background questionnaire, followed by a semi-structured interview via telephone or video call. The interviews explored patients' migraine symptoms, perception of interictal burden and treatment experience. The interview transcripts were analysed using thematic analysis. Results: The most reported migraine symptom was migraine pain, followed by aura, sensory sensitivity and nausea. Most participants reported interictal impact on HRQL, lifestyle changes they made to avoid triggers or in anticipation of an attack, impacts on work, career, daily activities and relationships. Emotional impacts were reported by all participants, including anger, depression, anxiety and hopelessness. Many participants who took preventive treatments reported improvements in HRQL and functioning but still experienced breakthrough attacks. Among patients who took CGRP mAbs, participants noted varying consistency of treatment effectiveness between treatment administrations. Conclusion: This study detailed the additional HRQL impact of migraine in-between migraine attacks and described the unmet need for effective treatment options to prevent and mitigate migraine attacks. [ABSTRACT FROM AUTHOR]