Caring for children and families during the COVID-19 pandemic: innovations and changes experienced by nurses.

OBJECTIVE: To understand the experience of nurses working in pediatric units in the face of innovations and changes in the process of caring for children and families during the COVID-19 pandemic. Also, the objective is to understand the typical experience of nurses in this care. METHOD: Qualitative research, which involved the participation of 16 nurses from pediatric units of a public teaching hospital. The data were analyzed according to the theoretical-methodological framework of Alfred Schütz's social phenomenology. RESULTS: The participants' reports generated the categories: the challenge of experiencing changes amid fear, the team's adaptation to innovations and changes caused by the COVID-19 pandemic and the expectation for care and the work process. CONCLUSION: The understanding of the nurses' experience highlighted changes, team adaptations and expectations for the care of children and families, which, although permeated by learning, were experienced by ethical dilemmas and moral suffering for these professionals.

End-of-life care and grief: study conducted with family members of COVID-19 victims. / Cuidados no final de vida e luto: estudo com familiares de vítimas da COVID-19.

This article aims to investigate the implications of grief among family members of COVID-19 victims; verify the prevalence of prolonged grief symptoms; and identify family members' expectations regarding end-of-life care for their loved ones affected by COVID-19. Descriptive, cross-sectional research, with a quantitative-qualitative approach. Data collection was performed using an online questionnaire, guided by the PG-13 instrument. Descriptive and inferential statistics were applied. The results were presented descriptively and with the aid of tables. The study sample included 142 family members, mostly female, who presented emotional, physical, social, and financial implications as a result of grief. A prevalence of prolonged grief symptoms was observed in 11.4% of the mourners with more than six months and 29.6% of those with less than six months. Three thematic categories were identified: transparency in communicating the health situation, access to moments of farewell, and promotion of comfort in care actions. The symptoms of Prolonged Grief Disorder have a significant association with the degree of kinship. In final care, family members' expectations were classified as: permission for a dignified farewell, effective communication, and promotion of comfort and care.

O objetivo deste artigo é investigar implicações do luto em familiares de vítimas da COVID-19; verificar a prevalência de sintomas de luto prolongado; identificar expectativas dos familiares acerca do cuidado em fim de vida de seus entes acometidos por COVID-19. Pesquisa descritiva, transversal, com abordagem quanti-qualitativa. Coleta de dados mediante questionário on-line, norteado pelo instrumento PG-13. Aplicou-se estatística descritiva e inferencial. Os resultados foram apresentados de forma descritiva e com auxílio de tabelas. Amostra de 142 familiares, maioria do sexo feminino, que apresentaram implicações emocionais, físicas, sociais e financeiras em decorrência do luto. Houve prevalência de sintomas de luto prolongado em 11,4% dos enlutados com mais de seis meses e 29.6% dos que tinham menos de seis meses. Foram identificadas três categorias temáticas: transparência na comunicação da situação de saúde, acesso a momentos de despedida e promoção de conforto nas ações de cuidado. Os sintomas de Transtorno de Luto Prolongado possuem associação significativa com o grau de parentesco. Nos cuidados finais as expectativas dos familiares foram classificadas em: permissão para despedida digna, comunicação efetiva e promoção de conforto e cuidado.

Social network of families involved in child neglect: building a multidimensional perspective. / Rede social de famílias envolvidas na negligência contra crianças e adolescentes: construindo um olhar multidimensional.

Neglect is one of the most frequently reported forms of violence against children and adolescents, although it has rarely been explored in national studies. In this light, the present study aimed to analyze the personal social network of families involved in negligence against children and adolescents. This work takes a qualitative approach, anchored in the Paradigm of Complexity, conducted with twenty families involved in negligence against children and adolescents in a municipality in the countryside of the state of São Paulo, Brazil. Data collection took place through minimal maps of the personal social network and semi-structured interviews in January 2021. The networks were limited, with little to no interaction among the different services and sectors, and were predominantly homogeneous. Because they have many weakened ties, they are relatively unsupportive, pointing out difficulties in access to work, education, and health. Due to the characteristics of the network, the complexity of the phenomenon of neglect was identified, in which elements condition and perpetuate experiences of absence and fragility. Interprofessional and intersectoral views and actions are requested and recommended.

A negligência constitui uma das violências contra crianças e adolescentes mais notificadas, entretanto ainda pouco explorada em estudos nacionais. O objetivo deste estudo foi analisar a rede pessoal social de famílias envolvidas na negligência contra crianças e adolescentes. Estudo qualitativo, ancorado no paradigma da complexidade, realizado junto a 20 familiares envolvidos na negligência contra crianças e adolescentes em município do interior de São Paulo, Brasil. A coleta de dados se deu por mapas mínimos da rede pessoal social e entrevistas semiestruturadas em janeiro de 2021. As redes se apresentaram reduzidas, com pouca ou nenhuma articulação entre os diferentes serviços e setores e predominantemente homogêneas. Por terem muitos vínculos fragilizados, mostrou-se pouco sustentadora, apontando dificuldades no acesso a trabalho, educação e saúde. Pelas características da rede, identificou-se a complexidade do fenômeno da negligência, em que elementos condicionam e perpetuam vivências de ausências e fragilidades. Olhares e ações interprofissionais e intersetoriais são pleiteadas e recomendadas.

Factors Associated With Quality-of-Dying-and-Death Classes Among Critically Ill Patients.

Importance: Improving end-of-life care in the intensive care unit (ICU) is a priority, but clinically modifiable factors of quality of dying and death (QODD) are seldom identified. Objectives: To comprehensively identify factors associated with QODD classes of dying ICU patients, emphasizing clinically modifiable factors based on the integrative framework of factors associated with for bereavement outcomes. Design, Setting, and Participants: This observational cohort study was conducted at medical ICUs of 2 Taiwanese medical centers from January 2018 to March 2020 with follow-up through December 2022. Eligible participants included primary family surrogates responsible for decision making for critically ill ICU patients at high risk of death (Acute Physiology and Chronic Health Evaluation II score >20) but who survived more than 3 days after ICU admission. Data analysis was conducted from July to September 2023. Main Outcomes and Measures: QODD was measured by the 23-item ICU-QODD questionnaire. Factors associated with patient membership in 4 previously determined QODD classes (high, moderate, poor to uncertain, and worst) were examined using a 3-step approach for latent class modeling with the high QODD class as the reference category. Results: A total of 309 family surrogates (mean [SD] age, 49.83 [12.55] years; 184 women [59.5%] and 125 men [40.5%]) were included in the study. Of all surrogates, 91 (29.4%) were the patients' spouse and 66 (53.7%) were the patients' adult child. Patient demographics were not associated with QODD class. Two family demographics (age and gender), relationship with the patient (spousal or adult-child), and length of ICU stay were associated with QODD classes. Patients of surrogates perceiving greater social support were less likely to be in the poor to uncertain (adjusted odds ratio [aOR], 0.89; 95% CI, 0.83-0.94) and worst (aOR, 0.92; 95% CI, 0.87-0.96) QODD classes. Family meetings were associated with the poor to uncertain QODD class (aOR, 8.61; 95% CI, 2.49-29.74) and worst QODD class (aOR, 7.28; 95% CI, 1.37-38.71). Death with cardiopulmonary resuscitation was associated with the worst QODD class (aOR, 7.51; 95% CI, 1.12-50.25). Family presence at patient death was uniformly negatively associated with the moderate QODD class (aOR, 0.16; 95% CI, 0.05-0.54), poor to uncertain QODD class (aOR, 0.21; 95% CI, 0.05-0.82), and worst QODD class (aOR, 0.08; 95% CI, 0.02-0.38). Higher family satisfaction with ICU care was negatively associated with the poor to uncertain QODD class (aOR, 0.93; 95% CI, 0.87-0.98) and worst QODD class (aOR, 0.86; 95% CI, 0.81-0.92). Conclusions and Relevance: In this cohort study of critically ill patients and their family surrogates, modifiable end-of-life ICU-care characteristics played a more significant role in associations with patient QODD class than did immutable family demographics, preexisting family health conditions, patient demographics, and patient clinical characteristics, thereby illuminating actionable opportunities to improve end-of-life ICU care.

Psychological resilience in the relationship between family function and illness uncertainty among family members of trauma patients in the intensive care unit.

BACKGROUND: Severe trauma accounts for a main factor inducing mortality for individuals aged < 45 years in China, which requires admission to intensive care unit (ICU) to receive comprehensive treatment. Family members of patients with unanticipated and life-threatening trauma during their ICU stays often experience psychosocial distress due to illness uncertainty. Previous research has shown that family function and psychological resilience are associated with illness uncertainty, respectively. However, little is known about the current situation and interacting mechanism between family function, psychological resilience, and illness uncertainty of family members for ICU trauma patients. Therefore, this study focused on exploring the current situation and relationships between these three factors in family members for ICU trauma patients. METHODS: The convenience sampling approach was adopted in the present cross-sectional survey, which involved 230 family members for ICU trauma patients from 34 hospitals in Chongqing, China. Related data were extracted with self-reporting questionnaires, which included sociodemographic characteristic questionnaire, the Family Adaptability, Partnership, Growth, Affection and Resolve Scale (APGAR), the 10-item Connor-Davidson Resilience Scale (10-CD-RISC) and the Mishel's Illness Uncertainty Scale for Family Members (MUIS-FM). Pearson correlation analysis was conducted to examine the correlations between various variables. Additionally, a structural equation model was adopted to assess the mediating effect of psychological resilience on family function and illness uncertainty. RESULTS: According to our results, family members for ICU trauma patients experienced high illness uncertainty with moderate family dysfunction and low psychological resilience. Family function directly affected illness uncertainty and indirectly affected illness uncertainty through psychological resilience in family members of ICU trauma patients. CONCLUSIONS: Family function and psychological resilience are the protective factors for reducing illness uncertainty. Healthcare providers should take effective measures, including family-functioning improvement and resilience-focused interventions, for alleviating illness uncertainty in family members of ICU trauma patients.

Design of Digital Mental Health Platforms for Family Member Cocompletion: Scoping Review.

BACKGROUND: The COVID-19 pandemic placed an additional mental health burden on individuals and families, resulting in widespread service access problems. Digital mental health interventions suggest promise for improved accessibility. Recent reviews have shown emerging evidence for individual use and early evidence for multiusers. However, attrition rates remain high for digital mental health interventions, and additional complexities exist when engaging multiple family members together. OBJECTIVE: As such, this scoping review aims to detail the reported evidence for digital mental health interventions designed for family use with a focus on the build and design characteristics that promote accessibility and engagement and enable cocompletion by families. METHODS: A systematic literature search of MEDLINE, Embase, PsycINFO, Web of Science, and CINAHL databases was conducted for articles published in the English language from January 2002 to March 2024. Eligible records included empirical studies of digital platforms containing some elements designed for cocompletion by related people as well as some components intended to be completed without therapist engagement. Platforms were included in cases in which clinical evidence had been documented. RESULTS: Of the 9527 papers reviewed, 85 (0.89%) met the eligibility criteria. A total of 24 unique platforms designed for co-use by related parties were identified. Relationships between participants included couples, parent-child dyads, family caregiver-care recipient dyads, and families. Common platform features included the delivery of content via structured interventions with no to minimal tailoring or personalization offered. Some interventions provided live contact with therapists. User engagement indicators and findings varied and included user experience, satisfaction, completion rates, and feasibility. Our findings are more remarkable for what was absent in the literature than what was present. Contrary to expectations, few studies reported any design and build characteristics that enabled coparticipation. No studies reported on platform features for enabling cocompletion or considerations for ensuring individual privacy and safety. None examined platform build or design characteristics as moderators of intervention effect, and none offered a formative evaluation of the platform itself. CONCLUSIONS: In this early era of digital mental health platform design, this novel review demonstrates a striking absence of information about design elements associated with the successful engagement of multiple related users in any aspect of a therapeutic process. There remains a large gap in the literature detailing and evaluating platform design, highlighting a significant opportunity for future cross-disciplinary research. This review details the incentive for undertaking such research; suggests design considerations when building digital mental health platforms for use by families; and offers recommendations for future development, including platform co-design and formative evaluation.

Anxiety and sleep quality in patients receiving maintenance hemodialysis: multiple mediating roles of hope and family function.

The objective of this cross-sectional study was to examine the extent of sleep quality among individuals undergoing maintenance hemodialysis (MHD) and to scrutinize whether hope and family function serve as mediators in the association between anxiety and sleep quality in this cohort. A convenience sampling method was used to recruit 227 patients receiving maintenance hemodialysis from two tertiary hospitals in Wuhan. Participants completed several self-report questionnaires, including the Sociodemographic questionnaire, Hospital Anxiety and Depression Scale, Athens Insomnia Scale, Herth Hope Index, and Family APGAR Index. As per the findings of the chain mediation analysis, it was observed that the sleep quality scores were directly predicted by anxiety. Moreover, anxiety positively predicted sleep quality scores through hope and family function as mediators. The observed types of mediation were partial mediation. The total indirect effect value was 0.354, indicating the mediating effect of hope and family function, while the total effect value was 0.481, representing the overall effect of anxiety on sleep quality. The total effect size was 73.60% (0.354/0.481), indicating that the mediation accounted for a significant portion of the relationship. This study established the chain mediating effect of hope and family function between anxiety and sleep quality in patients receiving maintenance hemodialysis. The findings highlight the importance of addressing anxiety and promoting hope and family function to improve sleep quality in this population. The findings suggest that healthcare professionals should be attentive to the anxiety levels of these patients and implement targeted interventions to help alleviate anxiety, enhance hope, and improve family functioning, with the ultimate goal of improving sleep quality in this population.

The Experiences of Hospital Admission in a Single Room for Older Persons With Dementia and Their Families: A Scoping Review.

INTRODUCTION: When older persons with dementia are admitted to hospital, they often feel disoriented and confused and their cognitive impairment may worsen, purely due to the sudden change in their environment. As such hospital design is recognised as an important aspect in the care and well-being of older persons with dementia. As the number of persons with dementia is increasing, the experience of admission to a hospital with, for example, single rooms is more relevant than ever. AIM AND METHODS: This scoping review aimed to identify, explore and conceptually map the literature reporting on what older people with dementia and their families experienced during admission to a hospital with single room accommodation. We followed the Joanna Briggs Institute recommendations for undertaking a scoping review. In addition, we used the Preferred Reporting Items for Systematic reviews (PRISMA-ScR) Checklist, which assisted the development and reporting of this scoping review. RESULTS: We included 10 sources within a time frame of 23 years (1998-2021). The sources originate from Europe, Australia and Canada. We identified three conceptual maps: Safety and security, Privacy and dignity and Sensorial stimulation. Our review demonstrates that the themes of the three conceptual maps are experienced as mutually interdependent for the older persons with dementia and their families. CONCLUSION: We conclude that it is not merely the single room design that determines what the older persons with dementia and their families experience as important; the exposure to sensorial stimulation and the presence of well-trained staff taking a dignified patient-centred approach are also crucial for their experience of high-quality nursing care.

Motivators for family carers of persons with dementia in Kenya.

OBJECTIVES: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. METHODS: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. RESULTS: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. CONCLUSIONS: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.

[Relationship Between Empathy and Depression in Adolescents: The Mediating Role of Family Functioning]. / é’å°‘å¹´å ±æƒ ä¸ŽæŠ‘éƒçš„å ³ç³»ï¼šå®¶åº­åŠŸèƒ½çš„ä¸­ä»‹ä½œç”¨.

Objective: To investigate the effect of empathy on depressive symptoms in adolescents and to explore the potential mediating role of family functioning in the effect of empathy on depressive symptoms. Methods: The 2022 cross-sectional data from the Chengdu Positive Child Development (CPCD) cohort were analyzed in the study. A survey was conducted in Chengdu in June 2022, involving 3020 students in grades 5-8 from three randomly selected stratified schools. The Interpersonal Reactivity Index (IRI-C), the Chinese Family Assessment Instrument (C-FAI), and the Center for Epidemiologic Studies Depression Scale for Children (CES-DC) were used in the survey. Chi-square test or one-way analysis of variance was performed to examine the differences in various demographic characteristics (sex, grade, region, and total monthly household income) between groups of respondents, as well as the differences in family functioning, empathy, and depression. Pearson correlation coefficient was used to examine the correlation between family functioning, empathy, and depressive symptoms. Structural equation modeling and SPSS PROCESS component Model 4 were used to analyze whether family functioning played a mediating role in the effect of empathy on depressive symptoms in adolescents. Results: The detection rate of depressive symptoms among survey respondents was 25.40%. The results of the difference analysis revealed significant differences in the detection rates of depressive symptoms among respondents of different grades, regions, and monthly household incomes (P<0.05). There was no significant difference in the detection rates of depressive symptoms between male and female students. There was a significant difference in the detection rate of depressive symptoms between respondents with different scores for family dysfunction and empathy ability (P<0.001). Correlation analysis results showed that empathy scores were negatively correlated with depression (r=-0.11, P<0.001), that family dysfunction was positively correlated with depression (r=0.29, P<0.001), and that empathy scores were negatively correlated with family functioning (r=-0.37, P<0.001). The mediating role of family dysfunction in the relationship between empathy and depressive symptoms was established, with the direct effect being 0.039 (95% confidence interval [CI]: 0.010-0.069, P<0.001) and the indirect effect value being -0.096 (95% CI: -0.115--0.079, P<0.001). The direct effect value accounted for 28.89% of the total effect value, while the mediation effect value accounted for 71.11% of the total effect value. Conclusion: The empathy ability of adolescents is correlated to depressive symptoms, and family functioning plays a mediating role between empathy and depressive symptoms in adolescents. It is suggested that adolescents' empathy ability and family functioning should be enhanced through multiple channels to reduce the occurrence of depressive symptoms.

Discrepancies in perceived family resilience between adolescents with chronic illness and parents: using response surface analysis to examine the relationship with adolescents' psychological adjustment.

BACKGROUND: This study aimed to explore discrepancies in adolescents with chronic illness and their parents' perceptions of family resilience, as well as the relationship between these differences and the psychological adjustment of adolescents with chronic illness. METHODS: A cross-sectional study was conducted. A total of 264 dyads of parents (77.7% mothers, mean age 41.60 years, SD = 6.17) and adolescents (48.5% girls, mean age 12.68 years, SD = 2.11) with chronic illness were recruited through convenience sampling from three children's hospitals in Wenzhou, Hangzhou, and Shanghai, China between June 2022 and May 2023. The Chinese version of the Family Resilience Scale and the Psychological Adjustment Scale, which are commonly used measures with good reliability and validity, were employed to assess family resilience and psychological adaption, respectively. The data were analyzed using polynomial regression and response surface analysis. RESULTS: Adolescents with chronic illness reported higher family resilience than their parents (t=-2.80, p < 0.05). The correlations between family resilience and adolescents' psychological adjustment reported by the adolescents (r = 0.45-0.48) were higher than parents (r = 0.18-0.23). In the line of congruence, there were positive linear (a1 = 1.09-1.60, p < 0.001) and curvilinear (a2=-1.38∼-0.72, p < 0.05) associations between convergent family resilience and adolescents' psychological adjustment. In the line of incongruence, when adolescents reported lower family resilience than parents, adolescents had a lower level of psychological adjustment (a3=-1.02∼-0.45, p < 0.05). Adolescents' sociability decreased when the perceived family resilience of parent-adolescent dyads converged (a4 = 1.36, p < 0.01). CONCLUSION: The findings highlighted the importance of considering the discrepancies and congruence of family resilience in the parent-child dyads when developing interventions to improve the psychological adjustment of adolescents with chronic illness. Interventions aimed at strengthening family communication to foster the convergence of perceptions of family resilience in parent-adolescent dyads were warranted.

Post-stroke family resilience is correlated with family functioning among stroke survivors: The mediating role of patient's coping and self-efficacy.

AIM: Family resilience and healthy family functioning are crucial for stroke survivors' rehabilitation. This study aimed to determine the mediating effects of self-efficacy and confrontation coping on the relationship between family resilience and functioning among patients with first-episode stroke. DESIGN: A cross-sectional design was applied. METHODS: 288 patients with first-episode stroke were recruited from 7 hospitals in Shangqiu and Shanghai, China, from July 2020 to October 2020. A shortened Chinese version of the Family Resilience Assessment Scale, family adaptation, partnership, growth, affection and resolve questionnaire, Medical Coping Modes Questionnaire, and Self-efficacy for Chronic Disease 6-item Scale were used to collect the self-reported data. The relationships among the studied variables were studied using spearman correlation and structural equation model. RESULTS: The average level of family functioning among stroke patients was 7.87 (SD = 2.32). About 26.8% (n = 76) of patients reported family dysfunction. The structural equation model showed that family resilience directly affected patients' satisfaction with family functioning (r = 0.406, p < 0.001) and indirectly affected the mediating role of patients' self-efficacy and confrontation coping style (r = 0.119, p < 0.001). The model was with good fit (χ2/df = 2.128, RMSEA = 0.065, GFI = 0.956, AGFI = 0.919, NFI = 0.949, and TLI = 0.956). CONCLUSION: Family resilience and functioning among patients with first-episode stroke are positively associated with the mediating effects of the patients' confrontation coping style and self-efficacy between family resilience and functioning. The findings indicate that the professionals should pay special attention to families exhibiting poor family resilience or with patients who rarely use confrontation coping styles or with poor self-efficacy since they are more likely to suffer from low functioning.

Farming, finance and family: factors associated with anxiety, depression and stress among Western Australian farmers.

Farming is a challenging, stressful and rewarding occupation involving many factors that are beyond farmers' control. The aim of this study was to investigate correlates associated with the anxiety, depression and stress of farmers in Western Australia. Farmers and farm residents (N = 124) completed an online survey assessing anxiety, depression, stress, farming stressors, social supports, coping strategies and sense of belonging. Higher financial/external trade and societal pressures, family/relationship tension, use of coping strategies such as self-blame, venting, disengagement and planning, lack of succession planning and considering selling the farm, and lower social support and sense of belonging, were associated with higher anxiety, depression and/or stress. The findings highlight the specific impacts of financial and family pressures on poorer mental health status among farmers. Clinical and community interventions that build on naturally occurring strengths, such as family support and community connectedness, are needed.

The Effect of Informing Patient Relatives with a Short Message on Anxiety Levels during Cardiovascular Surgery in Türkiye: A Randomized Controlled Trial.

BACKGROUND: Surgical procedures cause a certain level of anxiety in the relatives of the patients, it has been observed that heart surgeries cause more anxiety. AIM: To determine the effects of informing patients' relatives with short messages on anxiety levels during cardiovascular surgery. METHODS: The study was conducted as a randomized controlled research investigation from October 1, 2015, to December 31, 2022, at the cardiovascular surgery operating room of a university hospital and included 84 patient relatives (42 experimental and 42 control group). The Patient Relatives Information Form and the State and Trait Anxiety Inventory were used to collect the study data. The patients' relatives in the experimental group were informed by short messages (preparations for surgery have begun, your relative's surgery has started, your relative's surgery is still ongoing, and your relative's surgery is completed) during the surgery. State Anxiety Inventory was re-administered to all patients' relatives after cardiovascular surgery. The study was registered with ClinicalTrials.gov (NCT05157789). RESULTS: It was found that the postoperative State Anxiety Inventory score of the experimental group was significantly lower than that of the control group (P < 0.001). The difference between preoperative and postoperative state anxiety scores was significantly higher in the experimental group (P < 0.001). CONCLUSION: Informing the patients' relatives with a short message during cardiovascular surgery significantly reduced the level of anxiety.

Epidermolysis Bullosa in Spain: A Qualitative Analysis of Its Social Impact on Families With Diagnosed Minors.

BACKGROUND: Epidermolysis bullosa (EB) comprises a group of rare types of genodermatoses characterized by extreme mucocutaneous fragility, leading to blistering and/or erosions, even with minimal trauma. Continuous care through wound management is an integral part of daily life for the families and individuals affected. The aim of this study was to assess the social reality and impacts on families of having minor members diagnosed with EB in Spain. METHODS: A qualitative methodology was employed, utilizing four focus groups entailing participation by 24 parents (19 mothers and five fathers) of minors diagnosed with EB in Spain. RESULTS: Negative impacts on the family nucleus were evident in four priority areas of analysis: sociorelational, economic-labour, physical and psychoemotional, with significant differences observed based on the severity of the symptoms. CONCLUSION: Impacts on the family nucleus are noticeable from birth, influencing all other daily life routines and complicating family planning and organization. There is an imperative need to enhance the availability of sociohealth resources and to adopt an interdisciplinary approach to address their biopsychosocial needs. PATIENT OR PUBLIC CONTRIBUTION: The active participation of relatives of minors diagnosed with Epidermolysis Bullosa (EB) is invaluable to sociohealth professionals, legislators and researchers. A team member conducts their professional activities at DEBRA España (national patient association dedicated to enhancing the quality of life for individuals with EB and their families), actively engaging in all study phases.

PTSD risk factors in earthquake survivors and their families: a systematic review.

Background: Exposure to earthquakes can cause adverse effects on the mental health of survivors, including an increased risk of PTSD.Objective: This systematic review aims to analyse the previous secondary studies to identify the risk factors for PTSD from children to elderly earthquake survivors. In addition, it aims to consider the complexity of the joint effects of the individual, relational, and contextual risk factors, to also detect the most at-risk families.Method: After reviewing and screening studies from the literature search through PubMed, Web of Science, Scopus, and EBSCO under the guidance of PRISMA guidelines, ten eligible secondary studies were identified that examine the risk factors for PTSD in individuals (from children to elderly) affected by worldwide earthquakes.Results: The analysis of the included studies allowed the identification of a series of socio-demographic, pre-traumatic, peri-traumatic, and post-traumatic PTSD risk factors in children, adolescents, youth, adults, and elderly survivors. The results represent the complexity of the joint effects of these risk factors at individual, relational, and contextual levels.Conclusions: The consideration of the PTSD risk factors highlights the importance of individual characteristics and the type of experiences and exposure in the period before, during, and after the earthquake. This knowledge could allow the early identification of at-risk individuals of different ages and families and the implementation of intervention programmes.

This is the first systematic review to identify PTSD risk factors from children to elderly earthquake survivors using secondary studies.Considering the complexity of the joint effects at individual, relational, and contextual levels, several socio-demographic, pre-traumatic, peri-traumatic, and post-traumatic risk factors for PTSD were identified in the age groups considered. Moreover, the consideration of these factors could help the identification of at-risk families.The identification of risk factors for PTSD across the lifespan could provide helpful knowledge for prevention and intervention programmes.

Beyond troubled and untroubled positions - an intersectional analysis of siblings who are bereaved by drug-related deaths' meaning-making stories about their deceased brothers and sisters.

PURPOSE: This study investigates how social categories work and intersect in siblings bereaved by drug-related deaths' (DRDs) stories about their relationships to their deceased brother or sister. The sociocultural embedded process of making meaning of the relationship with the deceased individual is essential in adapting to the loss. However, insight into such experiences of siblings bereaved by a DRD is scarce. Previous research has suggested that DRDs may be stigmatized life experiences for bereaved family members, and this paper furthers understanding of the experiences and issues involved in losing a sibling in a stigmatized death. METHODS: An intersectional analysis is applied to interviews with 14 bereaved siblings. By investigating and displaying how different categories intertwine, various positionings are identified. FINDINGS: Categorization of the deceased siblings as "addicts" constructs a troubled position. However, when "addict" intersects with the categories "unique," "sibling," and "uncle," the troubled subject's position as an "addict" can be concealed. CONCLUSIONS: Normative conceptions of addiction and DRDs produce troubled subject positions. By intermingling the category of "addict" with other categories, less problematic positions are created. Still, intersections of categories can also construct further complexities of remorse and self-blame for the bereaved siblings.

The association between self-efficacy, perceived social support, and family resilience in patients undergoing hemodialysis: a cross-sectional study.

BACKGROUND: Self-efficacy of patients on hemodialysis is considered a main component of the successful management of chronic kidney diseases. The self-efficacy of these patients may be influenced by many individual and social factors. This study aimed to assess the association between perceived self-efficacy and social support by patients on hemodialysis treatment and the resilience of their families. METHODS: This cross-sectional study was conducted on 183 patients and 183 families of hemodialysis patients in the largest hemodialysis center in northwest of Iran. Data was collected from July to December 2021 using chronic kidney disease self-efficacy, multidimensional perceived social support (MSPSS), and the Walsh family resilience questionnaire (WFRQ). The collected data were analyzed by SPSS software using descriptive and inferential statistical tests. RESULTS: The findings showed that the mean score of patients' self-efficacy was 171.63 ± 38.19 in a possible range of 25 to 250. Moreover, the mean score of perceived social support was 62.12 ± 16.12 in a possible range of 7 to 84. The mean total score of family resilience was 119.08 ± 26.20 in a possible range of 32 to 84. Also, the results of the study showed a positive and significant relationship between the self-efficacy of patients with their perceived social support and the resilience of their families (p < 0.01). CONCLUSION: The results of the study showed that there is a significant relationship between patient self-efficacy and family resilience and social support received in chronic kidney patients undergoing hemodialysis. Therefore, it is suggested to consider practical strategies in the field of family resilience and social support to improve patients' self-efficacy.

Patient and family engagement in patient safety in the Eastern Mediterranean Region: a scoping review.

BACKGROUND: Patients can play a key role in delivering safe care by becoming actively involved in their health care. This study aimed at reviewing the literature for evidence of patients' and families' engagement in patient safety in the Eastern Mediterranean Region (EMR). METHODS: We conducted a scoping review of the literature published in English using PubMed, Medline, CINAHL, Scopus, ISI Web of Science, and PsycINFO until June 2023. RESULTS: A total of 9019 studies were screened, with 22 meeting the inclusion criteria. Our review found few published studies of patient and family engagement in patient safety research in the EMR. Thirteen studies explored the attitudes, perceptions, and/or experiences / preferences of patients, families, and healthcare providers (HCPs) regarding patient engagement in patient safety. Nine publications reported patient involvement in patient safety activities at varying levels. Three categories of factors were identified that may affect patient involvement: patient-related (e.g., lack of awareness on their role in preventing harms, unwillingness to challenge HCPs' authority, and cultural barriers); HCP-related (e.g., negative attitudes towards patient engagement, poor patient-provider communication, and high workload); and healthcare setting-related (e.g., lack of relevant policies and guidelines, lack of training for patients, and HCPs, and lack of patient-centered approach). CONCLUSION: This review highlighted limitations in the current literature on patient and family engagement in patient safety in the EMR, including both the depth of evidence and clarity of concepts. Further research is needed to explore how to actively involve patients and their families, as well as to determine whether such involvement translates into improved safety in practice.