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.

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.

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.

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.

[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.

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.

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.

Experiences of family carers in providing care to children with intellectual disabilities in India: A qualitative evidence synthesis.

BACKGROUND: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India. METHODS: A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach. RESULTS: The synthesis found five themes representing family carers' experiences and perspectives. These were 'resilience and acceptance', 'parental response', 'care dynamic', 'preparing for transition to adulthood' and 'parental advocacy'. CONCLUSION: Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.

Impact of family and caregiver factors on development and behaviours in maltreated young children.

Introduction: This study aimed to evaluate the prevalence of developmental and emotional/ behavioural concerns in maltreated children and to examine the impact of adverse family/caregiver risk factors on these outcomes. Method: We analysed family demographic and baseline data of 132 maltreated children and their caregivers from a family support programme in Singapore. We examined the associations of 3 main risk factors (i.e., caregiver mental health, educational attainment, and family socio-economic status [SES]) with developmental/behavioural outcomes using multivariable logistic regression, controlling for caregiver relationship to the child. Caregiver mental health was assessed using the Patient Health Questionnaire 9 (PHQ-9) and General Anxiety Disorder 7 (GAD-7) tools. Developmental/behavioural outcomes were assessed using the Ages and Stages Questionnaires (ASQ-3), ASQ-Social-Emotional (ASQ-SE), and the Child Behaviour Checklist (CBCL). Results: The children ranged in age, from 2 months to 3 years 11 months (median age 1.7 years, interquartile range [IQR] 0.9-2.6). Among caregivers, 86 (65.2%) were biological mothers, 11 (8.3%) were biological fathers, and 35 (26.5%) were foster parents or extended family members. Low family SES was associated with communication concerns on the ASQ-3 (adjusted odds ratio [AOR] 3.04, 95% CI 1.08-8.57, P=0.04). Caregiver mental health concerns were associated with increased behavioural concerns on the CBCL (AOR 6.54, 95% CI 1.83-23.33, P=0.004) and higher scores on the ASQ-SE (AOR 7.78, 95% CI 2.38-25.38, P=0.001). Conclusion: Maltreated children with caregivers experiencing mental health issues are more likely to have heightened emotional and behavioural concerns. Those from low SES families are also at increased risk of language delay, affecting their communication.

Benefits of a family-based care transition program for older adults after hip fracture surgery.

BACKGROUND: Hip fracture (HF) in older adults is strongly associated with a greater decline in their activities of daily living (ADLs) and health-related (HRQoL). The present study aimed to evaluate the effects of a family-based care transition program (FBCTP) on ADLs, HRQoL and social support in this age group after HF surgery. METHODS: A quasi-experimental design was conducted on 100 older adults who had undergone HFS and were selected by convenience sampling and allocated to the IG (n = 50) and the CG (n = 50). Data were collected utilizing the Barthel Index, the 12-item Short Form Health Survey (SF-12), and the Multidimensional Scale of Perceived Social Support. The FBCTP was delivered in-hospital education sessions, home visit, and a follow-up and telephone counselling session. The data were collected at three stages, including the baseline, four weeks after discharge, and eight weeks later. The level of statistical significance was set at 0.05. RESULTS: The results of the study indicated that the effects of time and group on the increase in ADLs were 15.2 and 36.69 (p < 0.000), respectively, following the completion of the FBCTP. Furthermore, time and group were found to have a positive effect on HRQoL, with an increase of 2.82 and 5.60 units, respectively (p < 0.000). In this context, time and group also interacted in the IG compared to the CG, with scores increasing by 1.86 units over time (p < 0.000). Although the study results indicated that social support improved by 1.98 units over time (p < 0.000), the effects of group alone and the time × group interaction were not statistically significant. This indicates that the program was not effective in accelerating social support. CONCLUSION: Consequently, nurses, policymakers, and planners engaged in geriatric healthcare may utilize these results to enhance the health status of this age group following HFS.

Views, Attitudes and Challenges When Supporting a Family Member in Their Decision to Travel to Switzerland to Receive Aid-In-Dying.

Objectives: Exploring the experiences, perceptions and meanings of family members and close friends of Israeli individuals who sought aid-in-dying outside Israel. Methods: Using the phenomenological-interpretive approach, a qualitative research design was employed, based on ten in-depth semi-structured interviews with Israelis who had provided support for a relative who embarked on suicide tourism. Results: The following five themes emerged from interviews: (1) facilitators for supporting an individual requesting suicide tourism; (2) choosing death and actively making the decision to die; (3) the meaning of traveling to die; (4) offering support throughout the process; and (5) facilitating procedures after death. Conclusion: The participants spoke of the active role that they played in their relative's suicide-tourism journey. They conveyed conflicting emotions and values regarding the decision at hand, the ability to say goodbye thanks to their pre-planned death, helping to reduce their suffering and burden, and dealing with the challenge of disclosing the deceased's plans, before and after the act, as well as their own involvement in the process. Relatives of suicide-tourism patients should receive professional support during and following this difficult process.

Challenges and coping strategies when caring for terminally ill persons with cancer: perspectives of family caregivers.

INTRODUCTION: Terminal illness is an irreversible illness that, without life-sustaining procedures, usually results in death or permanent disability from which recovery is unlikely. When involved, family caregivers are believed to improve health outcomes, such as reduced hospitalization, and establishing a patient's initial access to professional treatment services. However, caring for a patient with a terminal illness is viewed as one of the most difficult aspects of providing care. This study aimed to identify the challenges, and coping strategies developed by family caregivers to cope with the care of the terminally ill person. METHODS: An exploratory descriptive qualitative approach was used. Twenty (20) family caregivers voluntarily participated in the study from the Korle-Bu Teaching Hospital. Semi-structured interviews were conducted with the participants. The transcribed interviews were then analysed using thematic analysis. RESULTS: From the analysis, three main themes emerged: challenges, coping strategies, and social support. These themes encompassed sixteen subthemes including financial burden, bad health conditions, faith and prayer, and support from health professionals. From the study, both male and female family caregivers narrated that providing care for sick relatives undergoing terminal disease is characterized as a daily duty demanding one's time and fraught with emotional strain. In addition, even though it was a difficult job, family members who provided care for ailing relatives never gave up, citing responsibility, the importance of family, and religious beliefs as the primary motivations for doing so. CONCLUSION: The difficulties and demands of family caregiving roles for terminally ill relatives are complex and multifactorial. The findings call for multidisciplinary professional attention for family caregivers and policies that will support their lives holistically.

Living and dying between cultural traditions in African & Caribbean Heritage families: a constructivist grounded theory.

BACKGROUND: Ethnic differences influence end-of-life health behaviours and use of palliative care services. Use of formal Advance care planning is not common in minority ethnic heritage communities. Older adults expect and trust their children to be their decision makers at the end of life. The study aim was to construct a theory of the dynamics that underpin end-of-life conversations within families of African and Caribbean heritage. This is a voice not well represented in the current debate on improving end-of-life outcomes. METHODS: Using Charmaz's constructivist grounded theory approach, a purposive sample of elders, adult-children, and grandchildren of African and Caribbean Heritage were recruited. In-person and online focus groups were conducted and analysed using an inductive, reflexive comparative analysis process. Initial and axial coding facilitated the creation of categories, these categories were abstracted to constructs and used in theory construction. RESULTS: Elders (n = 4), adult-children (n = 14), and adult grandchildren (n = 3) took part in 5 focus groups. A grounded theory of living and dying between cultural traditions in African and Caribbean heritage families was created. The constructs are (a) Preparing for death but not for dying (b) Complexity in traditions crosses oceans (c) Living and dying between cultures and traditions (d) There is culture, gender and there is personality (e) Watching the death of another prompts conversations. (f) An experience of Hysteresis. DISCUSSION: African and Caribbean cultures celebrate preparation for after-death processes resulting in early exposure to and opportunities for discussion of these processes. Migration results in reforming of people's habitus/ world views shaped by a mixing of cultures. Being in different geographical places impacts generational learning-by-watching of the dying process and related decision making. CONCLUSIONS: Recognising the impact of migration on the roles of different family members and the exposure of those family members to previous dying experiences is important. This can provide a more empathetic and insightful approach to partnership working between health care professionals and patients and families of minority ethic heritage facing serious illness. A public health approach focusing on enabling adult-children to have better end of life conversations with their parents can inform the development of culturally competent palliative care.

Longitudinal associations between family functioning and generalized anxiety among adolescents: the mediating role of self-identity and cognitive flexibility.

BACKGROUND: Generalized anxiety (GA) is showing a high prevalence among adolescents nowadays; investigations on influencing factors and potential mechanisms are important to inform intervention development. The present two-wave study investigated the ways in which family functioning predicted GA six months later among adolescents, by considering the mediating role of self-identity and cognitive flexibility. METHODS: Adolescents were recruited from 27 randomly selected classes in two secondary schools in Chongqing and Fujian Province, China. Survey questionnaires assessing family functioning, self-identity, cognitive flexibility and GA were obtained from 1223 adolescents (Mage = 13.14, SD = 1.35) at two time points of the 6-month interval. RESULTS: The association between family functioning (T1) and GA (T2) was significant (r= -0.152, p < 0.01). Self-identity and cognitive flexibility sequentially mediated the relationship between family functioning (T1) and GA (T2) (with the indirect effect = -0.005, 95% CI = -0.007~ -0.002) after controlling for age, gender, and GA at baseline. Cognitive flexibility also showed a significant and direct mediating effect (with the indirect effect = -0.008, 95% CI = -0.012 ~ -0.005). CONCLUSION: Findings indicated that family functioning can be a protective factor of GA, and self-identity and cognitive flexibility act as a crucial role in the association between family functioning and GA. Future studies should adopt more time points and long-term follow-up assessments using more robust approaches to improve the reliability of the study findings. Findings may offer some implications that building a harmonious, open and warm family and guiding adolescents to develop self-identity as well as more flexible cognitive style could be helpful to prevent and cope with anxious emotion.

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.