Cell-type-specific disruption of cortico-striatal circuitry drives repetitive patterns of behavior in fragile X syndrome model mice.

Individuals with fragile X syndrome (FXS) are frequently diagnosed with autism spectrum disorder (ASD), including increased risk for restricted and repetitive behaviors (RRBs). Consistent with observations in humans, FXS model mice display distinct RRBs and hyperactivity that are consistent with dysfunctional cortico-striatal circuits, an area relatively unexplored in FXS. Using a multidisciplinary approach, we dissect the contribution of two populations of striatal medium spiny neurons (SPNs) in the expression of RRBs in FXS model mice. Here, we report that dysregulated protein synthesis at cortico-striatal synapses is a molecular culprit of the synaptic and ASD-associated motor phenotypes displayed by FXS model mice. Cell-type-specific translational profiling of the FXS mouse striatum reveals differentially translated mRNAs, providing critical information concerning potential therapeutic targets. Our findings uncover a cell-type-specific impact of the loss of fragile X messenger ribonucleoprotein (FMRP) on translation and the sequence of neuronal events in the striatum that drive RRBs in FXS.

Altered striatal actin dynamics drives behavioral inflexibility in a mouse model of fragile X syndrome.

The proteome of glutamatergic synapses is diverse across the mammalian brain and involved in neurodevelopmental disorders (NDDs). Among those is fragile X syndrome (FXS), an NDD caused by the absence of the functional RNA-binding protein FMRP. Here, we demonstrate how the brain region-specific composition of postsynaptic density (PSD) contributes to FXS. In the striatum, the FXS mouse model shows an altered association of the PSD with the actin cytoskeleton, reflecting immature dendritic spine morphology and reduced synaptic actin dynamics. Enhancing actin turnover with constitutively active RAC1 ameliorates these deficits. At the behavioral level, the FXS model displays striatal-driven inflexibility, a typical feature of FXS individuals, which is rescued by exogenous RAC1. Striatal ablation of Fmr1 is sufficient to recapitulate behavioral impairments observed in the FXS model. These results indicate that dysregulation of synaptic actin dynamics in the striatum, a region largely unexplored in FXS, contributes to the manifestation of FXS behavioral phenotypes.

Sex as Boys' Fame, But Girls' Shame: Adversarial Adolescent Gender Roles and Gender-based Violence in Guyana.

Gender-based violence (GBV) is a significant issue for youth in Guyana, particularly among young women. Yet, discussions about sex, dating, and violence rarely occur at the community level. To understand the heightened risk for GBV with youth in Guyana, we utilized a critical qualitative design to explore adolescent dating violence with adolescents (14-16 years old), parents, and school officials in a public secondary school in Guyana. In total, 36 racially and religiously diverse participants from low to middle-income households participated in focus groups (n = 30) and interviews (n = 6). Discussions centered on dating in adolescence; community awareness of dating violence; gender, racialization, and class in relation to dating violence; and dating violence prevention in schools and family settings. Our results revealed that heteronormative, adversarial gender roles in Guyana are enacted in adolescent relationships in ways that contribute to violence. Two important factors emerged in relation to femininity: female respectability related to sexuality; and the relationship between clothing, sexuality, and social class. Masculinity for adolescent boys was centered on reproducing normative assumptions about femininity and explaining the use of violence through pathologizing race. Participants were also asked to identify gender roles that adolescent boys and girls should embody in relationships, which revealed possibilities for overcoming adversarial roles in relationships. We propose that adolescent GBV prevention initiatives consider long-standing and deeply embedded ideas within gender norms that are connected to sexuality, class, and race. Without accounting for these systemic factors, GBV prevention initiatives and programs may inadvertently perpetuate traditional definitions of masculinity and femininity that contribute to violence.

Immigration Status as the Foundational Determinant of Health for People Without Status in Canada: A Scoping Review.

Migration is increasing at unprecedented rates worldwide, but inadequate mechanisms for granting citizenship or permanent residence have rendered many immigrants without legal status. We study the health of people without immigration status in Canada, building on a 2010 review on being without status and health. We employ an expanded definition of health, guided by the WHO Social Determinants of Health (SDoH) framework. Using a scoping review methodology, we reviewed literature from 2008 to 2018 on the SDoH of people without legal immigration status in Canada, selecting 33 articles for analysis. We found that structural determinants of health, such as stigmatization and criminalization, and intermediary determinants, such as fear of deportation and healthcare avoidance, produce ill health. We show how different social positions are produced by SDoH, finding immigration status to be the foundational determinant of health for people without status in Canada. We argue that lack of immigration status as a SDoH is missing from the WHO framework.

Asymmetric Power Relations in Gynaecological Consultations for Cervical Cancer Prevention: Biomedical and Gender Issues.

A generic qualitative research, using a poststructuralist feminist perspective, was conducted in a Spanish gynaecology unit with the following aims: (a) to analyse how asymmetric power relations in relation to biomedical knowledge and gender shape the medical encounters between gynaecologists and women diagnosed with cervical intraepithelial neoplasia and (b) to explore the cognitive, moral, and emotional responses expressed by patients. A total of 21 women diagnosed with cervical intraepithelial neoplasia were recruited through purposive sampling. Semi-structured interviews were recorded and transcribed, and a thematic analysis was carried out. Two major themes were identified: (a) gendered relations in cervical intraepithelial neoplasia medical encounters are based on hidden, judgmental moral assumptions, making women feel irresponsible and blamed for contracting the human papillomavirus infection; (b) biomedical power is based on the positivist assumption of a single truth (scientific knowledge), creating asymmetric relations rendering women ignorant and infantilised. Women reacted vehemently during the interviews, revealing a nexus of cognitive, moral, and emotional reactions. In medical encounters for management of cervical intraepithelial neoplasia, patients feel they are being morally judged and given limited information, generating emotional distress. Healthcare professionals should question whether their practices are based on stereotypical gender assumptions which lead to power asymmetries during encounters.

Absence of RNA-binding protein FXR2P prevents prolonged phase of kainate-induced seizures.

Status epilepticus (SE) is a condition in which seizures are not self-terminating and thereby pose a serious threat to the patient's life. The molecular mechanisms underlying SE are likely heterogeneous and not well understood. Here, we reveal a role for the RNA-binding protein Fragile X-Related Protein 2 (FXR2P) in SE. Fxr2 KO mice display reduced sensitivity specifically to kainic acid-induced SE. Immunoprecipitation of FXR2P coupled to next-generation sequencing of associated mRNAs shows that FXR2P targets are enriched in genes that encode glutamatergic post-synaptic components. Of note, the FXR2P target transcriptome has a significant overlap with epilepsy and SE risk genes. In addition, Fxr2 KO mice fail to show sustained ERK1/2 phosphorylation induced by KA and present reduced burst activity in the hippocampus. Taken together, our findings show that the absence of FXR2P decreases the expression of glutamatergic proteins, and this decrease might prevent self-sustained seizures.

Stress undermines reward-guided cognitive performance through synaptic depression in the lateral habenula.

Weighing alternatives during reward pursuit is a vital cognitive computation that, when disrupted by stress, yields aspects of neuropsychiatric disorders. To examine the neural mechanisms underlying these phenomena, we employed a behavioral task in which mice were confronted by a reward and its omission (i.e., error). The experience of error outcomes engaged neuronal dynamics within the lateral habenula (LHb), a subcortical structure that supports appetitive behaviors and is susceptible to stress. A high incidence of errors predicted low strength of habenular excitatory synapses. Accordingly, stressful experiences increased error choices while decreasing glutamatergic neurotransmission onto LHb neurons. This synaptic adaptation required a reduction in postsynaptic AMPA receptors (AMPARs), irrespective of the anatomical source of glutamate. Bidirectional control of habenular AMPAR transmission recapitulated and averted stress-driven cognitive deficits. Thus, a subcortical synaptic mechanism vulnerable to stress underlies behavioral efficiency during cognitive performance.

The Health Consequences of Neocolonialism for Latin American Immigrant Women Working as Caregivers in Spain: A Multisite Qualitative Analysis.

In Spain, most jobs available for Latin American immigrant women are in intimate labour (caregiving and domestic work). This work is usually performed under informal employment conditions. The objective of this study was to explain how the colonial logic mediates the experiences of Latin American women working in intimate labour in Spain, and the effects of such occupation on their health and wellbeing, using a decolonial theoretical framework. A multi-site secondary data analysis of qualitative data from four previous studies was performed utilizing 101 interviews with Latin American immigrant women working as caregivers in Spain. Three interwoven categories show how the dominant colonial logic in Spain creates low social status and precarious jobs, and naturalizes intimate labour as their métier while producing detrimental physical and psychosocial health consequences for these immigrant caregivers. The caregivers displayed several strategies to resist and navigate intimate labour and manage its negative impact on health. Respect and integration into the family for whom they work had a buffering effect, mediating the effects of working conditions on health and wellbeing. Based on our analysis, we suggest that employment, social, and health protection laws and strategies are needed to promote a positive working environment, and to reduce the impact of caregiving work for Latin American caregivers.

How to translate scientific knowledge into practice? Concepts, models and application.

OBJECTIVES: to present the concept of Knowledge Translation and Exchange as it has been used in the international literature and in Canada, particularly. Next, to describe a renowned conceptual model to guide its implementation, entitled Knowledge-to-Action Cycle. RESULTS: we described the use of the model in the context of the municipal primary health care system in southern Brazil for the implementation of pain management strategies during vaccination. CONCLUSIONS: in this theoretical reflection, we argue that in order to promote health equity and quality of care in the Unified Health System (Brazilian SUS) it is important to translate scientific knowledge to various practice settings and create opportunities for exchange with users of this knowledge, such as health professionals, managers, policy makers, patients, family members and other stakeholders.

The medicalisation of the dying self: The search for life extension in advanced cancer.

Although many studies have previously examined medicalisation, we add a new dimension to the concept as we explore how contemporary oncological medicine shapes the dying self as predominantly medical. Through an analysis of multiple case studies collected within a comprehensive cancer centre in Ontario, Canada, we examine how people with late-stage cancer and their healthcare providers enacted the process of medicalisation through engaging in the search for oncological treatments, such as experimental drug trials, despite the incurability of their disease. The seven cases included 20 interviews with patients, family, physicians and nurses, the analysis of 30 documents and 5 hr of field observation. A poststructural perspective informed our study. We propose that searching for life extension enacts medicalisation by shaping the dying person afflicted with terminal cancer into new medical subjectivities that are knowledgeable, active, entrepreneurial and curative. Participants initially took up medical thinking from the formal oncology system, but then began to apply and internalise medical rationalities to alter their personhood, thereby generating new curative possibilities for themselves. For people seeking life extension, the embodied and day-to-day experiences of suffering and being close to death became expressed and moderated in fundamentally medicalised terms.

Educando pesquisadores qualitativos em saúde no Brasil: perspectivas discentes e docentes / Educating qualitative health researchers in Brazil: students and teachers' perspectives

Resumo Embora em franca expansão, a pesquisa qualitativa enfrenta desafios no campo da saúde. O objetivo é analisar o ensino de pesquisa qualitativa em saúde na pós-graduação no Brasil na perspectiva de atores envolvidos no processo, visando compreender desafios e possibilidades na formação de futuros pesquisadores. Foram conduzidos três grupos focais, totalizando 37 participantes no espaço de um congresso de pesquisa qualitativa em saúde. Emergiram quatro categorias na análise: campo científico biomédico; produtivismo e avaliação acadêmica; estratégias de ensino e currículo e formação de educadores. Os resultados revelam desafios na formação de pesquisadores em pesquisa qualitativa no Brasil num campo científico dominado pela tradição positivista, baixo letramento de cientistas em métodos qualitativos e predomínio da cultura acadêmica produtivista. Conclui-se que o preconceito dificulta a formação de novos pesquisadores, mas há iniciativas de excelência na formação, como o ensino obrigatório dessa abordagem na graduação e o ensino interdisciplinar na pós-graduação.

Abstract Although expanding rapidly, qualitative research faces challenges in the health field. The objective is to analyze the teaching of qualitative research in health in graduate studies in Brazil from the perspective of actors involved in the process, aiming to understand challenges and possibilities in the education of future researchers. Three focus groups were conducted with 37 participants in the space of a qualitative health research conference. Four categories emerged in the analysis: biomedical scientific field; productivism and academic evaluation; teaching strategies, and curriculum and educator training. The results reveal challenges in the education of researchers in qualitative research in Brazil in a scientific field dominated by the positivist tradition, low literacy of scientists in qualitative methods and a predominance of academic productivist culture. It is concluded that prejudice hinders the education of new researchers, but there are initiatives of excellence in training, such as the mandatory teaching of this approach at undergraduate courses and interdisciplinary education at graduate level.

How to translate scientific knowledge into practice? Concepts, models and application / ¿Cómo traducir el conocimiento científico a la práctica? Conceptos, modelos y aplicación / Como traduzir o conhecimento científico à prática? Conceitos, modelos e aplicação

ABSTRACT Objectives: to present the concept of Knowledge Translation and Exchange as it has been used in the international literature and in Canada, particularly. Next, to describe a renowned conceptual model to guide its implementation, entitled Knowledge-to-Action Cycle. Results: we described the use of the model in the context of the municipal primary health care system in southern Brazil for the implementation of pain management strategies during vaccination. Conclusions: in this theoretical reflection, we argue that in order to promote health equity and quality of care in the Unified Health System (Brazilian SUS) it is important to translate scientific knowledge to various practice settings and create opportunities for exchange with users of this knowledge, such as health professionals, managers, policy makers, patients, family members and other stakeholders.

RESUMEN Objetivos: presentar el concepto de Traducción e Intercambio de Conocimiento tal como se ha utilizado en la literatura internacional y, en particular, en Canadá. A continuación, describir un modelo conceptual reconocido para guiar su implementación, titulado Ciclo del Conocimiento a la Acción. Resultados: ilustramos el uso del modelo en el contexto del sistema municipal de atención primaria de salud en el sur de Brasil para implementar estrategias de manejo del dolor durante la vacunación. Conclusiones: en esta reflexión teórica, argumentamos sobre la importancia de traducir el conocimiento científico a los diversos contextos de práctica y de crear oportunidades de intercambio con los usuarios de este conocimiento, como profesionales sanitarios, gerentes, formuladores de políticas públicas, pacientes, familias y otros grupos de interés para promover la equidad y la calidad de los cuidados en el Sistema Único de Salud.

RESUMO Objetivos: apresentar o conceito de Tradução e Intercâmbio do Conhecimento tal como vem sendo utilizado na literatura internacional e, em particular, no Canadá. A seguir, descrever um renomado modelo conceitual para orientar a sua implementação, intitulado Ciclo do Conhecimento à Ação. Resultados: ilustramos a utilização do modelo no contexto do sistema municipal de atenção básica à saúde no sul do Brasil, na implementação de estratégias de manejo da dor durante a vacinação. Conclusões: nesta reflexão teórica, argumentamos sobre a importância de se traduzir o conhecimento científico aos diversos contextos de prática e criar oportunidades de intercâmbio com os usuários desse saber, como profissionais de saúde, gestores, formuladores de políticas públicas, pacientes, familiares e demais grupos de interesse, para promover equidade e qualidade dos cuidados no Sistema Único de Saúde.

When risk becomes illness: The personal and social consequences of cervical intraepithelial neoplasia medical surveillance.

BACKGROUND: After the early detection of cervical intraepithelial neoplasia (CIN), medical surveillance of the precancerous lesions is carried out to control risk factors to avoid the development of cervical cancer. OBJECTIVE: To explore the effects of medical surveillance on the personal and social lives of women undergoing CIN follow-up and treatment. METHODOLOGY: A generic qualitative study using a poststructuralist perspective of risk management was carried out in a gynecology clinic in a public hospital of the Galician Health Care System (Spain). Participants were selected through purposive sampling. The sample consisted of 21 women with a confirmed diagnosis of CIN. Semistructured interviews were recorded and transcribed, and a thematic analysis was carried out, including researcher triangulation to verify the results of the analysis. FINDINGS: Two main themes emerged from the participants' experiences: CIN medical surveillance encounters and risk management strategies are shaped by the biomedical discourse, and the effects of "risk treatment" for patients include (a) profound changes expected of patients, (b) increased patient risk management, and (c) resistance to risk management. While doctors' surveillance aimed to prevent the development of cervical cancer, women felt they were sick because they had to follow strict recommendations over an unspecified period of time and live with the possibility of a life-threatening disease. Clinical risk management resulted in the medicalization of women's personal and social lives and produced great uncertainty. CONCLUSIONS: This study is the first to conceptualize CIN medical surveillance as an illness experience for patients. It also problematizes the effects of preventative practices in women's lives. Patients deal with great uncertainty, as CIN medical surveillance performed by gynecologists simultaneously trivializes the changes expected of patients and underestimates the effects of medical recommendations on patients' personal wellbeing and social relations.

Health care informational challenges for women diagnosed with cervical intraepithelial neoplasia: a qualitative study.

BACKGROUND: Internationally, women with cervical intraepithelial neoplasia (CIN) lack knowledge about their disease, which limits their ability to take responsibility for self-care and creates negative psychosocial effects, including marital problems. Normally, screening is performed in primary care, and in case of abnormal results, the patient is referred to specialized care for follow-up and treatment. Given the lack of international literature regarding patients' experiences in primary and specialized healthcare, our study aims to: (a) investigate how women with CIN perceive the communication and management of information by healthcare providers at different moments of their healthcare and (b) identify these women's informational needs. METHODS: A qualitative exploratory study was carried out in a gynecology unit of a public hospital of the Galician Health Care Service (Spain). Participants were selected through purposive sampling. The sample consisted of 21 women aged 21 to 52 years old with a confirmed diagnosis of CIN. Semistructured interviews were recorded and transcribed. A thematic analysis was carried out, including triangulation of researchers for analysis verification. RESULTS: Two analytical themes were identified. The first was communication gaps in the diagnosis and management of information in primary and specialized healthcare. These gaps occurred in the following moments of the healthcare process: (a) cervical cancer screening in primary care, (b) waiting time until referral to specialized care, (c) first consultation in specialized care, and (d) after consultation in specialized care. The second theme was participants' unmatched informational needs. The doubts and informational needs of women during their healthcare process related to the following subthemes: (a) HPV transmission, (b) HPV infection symptoms and consequences, and (c) CIN treatment and follow-up. CONCLUSIONS: This study shows that women who have a diagnosis of CIN experience important healthcare informational challenges when accessing primary and specialized care that have several implications for their wellbeing. The information given is limited, which makes it difficult for women to understand and participate in the decision making regarding the prevention and treatment of CIN. Service coordination among different levels of care and the availability of educational materials at any given time would improve the patients' healthcare experience.

The autism- and schizophrenia-associated protein CYFIP1 regulates bilateral brain connectivity and behaviour.

Copy-number variants of the CYFIP1 gene in humans have been linked to autism spectrum disorders (ASD) and schizophrenia (SCZ), two neuropsychiatric disorders characterized by defects in brain connectivity. Here, we show that CYFIP1 plays an important role in brain functional connectivity and callosal functions. We find that Cyfip1-heterozygous mice have reduced functional connectivity and defects in white matter architecture, similar to phenotypes found in patients with ASD, SCZ and other neuropsychiatric disorders. Cyfip1-deficient mice also present decreased myelination in the callosal axons, altered presynaptic function, and impaired bilateral connectivity. Finally, Cyfip1 deficiency leads to abnormalities in motor coordination, sensorimotor gating and sensory perception, which are also known neuropsychiatric disorder-related symptoms. These results show that Cyfip1 haploinsufficiency compromises brain connectivity and function, which might explain its genetic association to neuropsychiatric disorders.

Presencia de familiares durante la reanimación cardiopulmonar: perspectivas de pacientes, familiares y profesionales de la salud en el País Vasco / Presence of relatives during cardiopulmonary resuscitation: Perspectives of health professionals, patients and family in the Basque Country

Objetivo: Explorar la percepción acerca de la presencia de familiares durante la reanimación cardiopulmonar (RCP) en pacientes adultos, de los propios pacientes y familiares, enfermeras y médicos. Diseño: Se desarrolló un estudio cualitativo exploratorio y un análisis temático. Emplazamiento: Atención Primaria, Atención Hospitalaria y Servicio de Emergencias del Servicio Vasco de Salud. Participantes: La selección de los participantes se realizó a través de muestreo intencional. Se desarrollaron 4 grupos de discusión: uno de pacientes y familiares, 2 de enfermeras y uno de médicos. Método: Se realizó un análisis temático. Se utilizaron técnicas de triangulación entre investigadores e investigador-informante. Se utilizó el programa informático Open Code 4.1. Resultados: Se identificaron 3 categorías significativas: impacto de la actuación en la familia; peso de la responsabilidad ética y legal; poder, lugar donde sucede la parada y supuestos culturales. Conclusiones: La RCP es un constructo social influido por los valores de los contextos socioculturales específicos. En este estudio, los pacientes y familiares describieron temor y resistencia a presenciar la RCP. Por su parte, los profesionales sanitarios consideran que su decisión reviste complejidad, siendo necesario valorar cada caso de forma independiente e integrando a pacientes y familiares en la toma de decisiones. Como líneas de investigación futuras sería recomendable profundizar sobre la experiencia subjetiva de familiares que hayan presenciado la RCP y el impacto de los elementos contextuales y socioculturales en sus percepciones

Objective: To determine the perception of nurses, doctors, patients and family or relatives being present during cardiopulmonary resuscitation (CPR) in adult patients. Design: A qualitative exploratory study and thematic analysis were developed. Site: Primary Care, Hospital Care and Emergency Service of the Basque Health Service. Participants.The selection of the participants was made through intentional sampling. Four focus groups were developed: one of patients and family, 2 of nurses, and one of physicians. Method: Thematic analysis was performed. Triangulation techniques were used between investigators and investigator-participant member. The Open code 4.1 statistics software was used. Results: Three significant categories were identified: the impact on the family; the weight of ethical and legal responsibility; power, place of death, and cultural assumptions. Conclusions: CPR is a social construct influenced by values which are situated in specific socio-cultural contexts. In this study, patients and family members describe the fear and resistance to being present during CPR. Health professionals consider that their decision is complex, and each case must be assessed independently, and patients and relatives must be integrated into decision-making. Future research should explore in greater depth the subjective experience of relatives who have witnessed CPR and the impact of contextual and sociocultural elements from the perspectives of relatives

Public-private partnership (PPP) development: Toward building a PPP framework for healthy eating.

Public-private partnerships (PPPs) in public health have gained great attention in the global health literature over the last two decades. Evidence suggests that PPPs could contribute to mitigating complex health problems. There is, however, limited knowledge about the process and specific conditions in which PPPs for healthy eating, in particular, can be developed successfully. To address this gap, this article first summarizes the literature, and second, using qualitative content analysis, identifies factors deemed to influence the process of building PPPs for healthy eating. The literature search was undertaken in two stages. The first stage focused on PPPs in public health to understand what constitutes a PPP, and the types and characteristics of PPPs. The second stage sought empirical examples and conceptual papers related to PPPs for healthy eating to identify critical elements that could facilitate or hinder partnerships between the government and the food industry. The search yielded 38 articles on PPPs in public health and 20 on PPPs for healthy eating. The analysis generated 23 individual elements that have the potential to influence a successful process of building PPPs for healthy eating (eg, endorsement from an individual champion, equal representation from partner organizations on board committees). The analysis also yielded five factors that appeared to well-represent the 23 individual elements of PPP formation: motivation, enablers, governance, benefits, and barriers. These results constitute an important step to understand critical factors involved in the formation of PPPs in public health and should inform additional empirical research to validate them.

[Presence of relatives during cardiopulmonary resuscitation: Perspectives of health professionals, patients and family in the Basque Country]. / Presencia de familiares durante la reanimación cardiopulmonar: perspectivas de pacientes, familiares y profesionales de la salud en el País Vasco.

OBJECTIVE: To determine the perception of nurses, doctors, patients and family or relatives being present during cardiopulmonary resuscitation (CPR) in adult patients. DESIGN: A qualitative exploratory study and thematic analysis were developed. SITE: Primary Care, Hospital Care and Emergency Service of the Basque Health Service. PARTICIPANTS: The selection of the participants was made through intentional sampling. Four focus groups were developed: one of patients and family, 2 of nurses, and one of physicians. METHOD: Thematic analysis was performed. Triangulation techniques were used between investigators and investigator-participant member. The Open code 4.1 statistics software was used. RESULTS: Three significant categories were identified: the impact on the family; the weight of ethical and legal responsibility; power, place of death, and cultural assumptions. CONCLUSIONS: CPR is a social construct influenced by values which are situated in specific socio-cultural contexts. In this study, patients and family members describe the fear and resistance to being present during CPR. Health professionals consider that their decision is complex, and each case must be assessed independently, and patients and relatives must be integrated into decision-making. Future research should explore in greater depth the subjective experience of relatives who have witnessed CPR and the impact of contextual and sociocultural elements from the perspectives of relatives.