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1.
BMJ Open ; 14(9): e086170, 2024 Sep 05.
Artículo en Inglés | MEDLINE | ID: mdl-39237281

RESUMEN

OBJECTIVES: The purpose of this study was to describe the experiences and actions of part-time firefighters' family members in rural areas in Sweden. DESIGN: The study had an inductive descriptive design and used the critical incident technique. SETTING: Rural areas, primarily served by a part-time fire station, across Sweden. PARTICIPANTS: The study included 25 participants (21 females and 4 males) with experiences of being a family member of a part-time firefighter. Family members who themselves served as firefighters were excluded. RESULTS: Being a part-time firefighter's family member was described into three main areas of experiences: 'affecting everyday life', 'dealing with uncertainty' and 'being in this together'. Actions taken were divided into two main areas: 'pursuing adaptations' and 'alleviating difficulties'. CONCLUSIONS: Family members of part-time firefighters faced increased responsibility at home, managing personal inconvenience and frustration. They offered emotional support for the firefighter, however, expressing a need for guidance on handling firefighters' emotions and mental health after call-outs. Despite their crucial role, they often felt unrecognised by the fire and rescue service. Nonetheless, they took pride in their firefighter's contribution to the community and noted positive impacts on the family.


Asunto(s)
Familia , Bomberos , Humanos , Bomberos/psicología , Femenino , Masculino , Suecia , Familia/psicología , Adulto , Persona de Mediana Edad , Adaptación Psicológica , Población Rural
2.
BMJ Open ; 14(9): e087444, 2024 Sep 05.
Artículo en Inglés | MEDLINE | ID: mdl-39237283

RESUMEN

INTRODUCTION: The decisions of withholding or withdrawing life-sustaining treatments are difficult to make in the context of emergency departments (EDs) because most patients are unable to communicate. Relatives are thus asked to participate in the decision-making process, although they are unprepared to face such situations. We therefore aimed to develop a standardised intervention for announcing decisions of withholding or withdrawing life-sustaining treatments in EDs and assess the efficacy of the intervention on the stress of relatives. METHODS AND ANALYSIS: The DISCUSS trial is a multicentre stepped-wedge cluster randomised study and will be conducted at nine EDs in France. A standardised intervention based on human simulation will be codesigned with partner families and implemented at three levels: the relatives, the healthcare professionals (HCP) and the EDs. The intervention will be compared with a control based on treatment as usual. A total of 538 families are planned to be included: 269 in the intervention group and 269 in the control group. The primary endpoint will be the symptoms of post-traumatic stress disorder (PTSD) at 90 days. The secondary endpoints will be symptoms of PTSD at 7 and 30 days, diagnosis of PTSD at 90 days and anxiety and depression scores at 7, 30 and 90 days. Satisfaction regarding the training, the assertiveness in communication and real-life stress of HCPs will be measured at 90 days. ETHICS AND DISSEMINATION: This study was approved by the ethics committee Est III from Nancy and the French national data protection authority. All relatives and HCPs will be informed regarding the study objectives and data confidentiality. Written informed consent will be obtained from participants, as required by French law for this study type. The results from this study will be disseminated at conferences and in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: NCT06071078.


Asunto(s)
Servicio de Urgencia en Hospital , Familia , Privación de Tratamiento , Humanos , Toma de Decisiones , Familia/psicología , Francia , Estudios Multicéntricos como Asunto , Ensayos Clínicos Controlados Aleatorios como Asunto , Trastornos por Estrés Postraumático/terapia , Estrés Psicológico , Privación de Tratamiento/ética
3.
Syst Rev ; 13(1): 236, 2024 Sep 17.
Artículo en Inglés | MEDLINE | ID: mdl-39289722

RESUMEN

BACKGROUND: Children utilizing invasive home mechanical ventilation (administered via tracheostomy tube) receive intensive care at home without the support of trained staff typically present in an intensive care unit; within the context of worsening home nursing shortages, much of the 24/7 care burden falls to families which are likely under supported. Prior reviews have explored the quality of life of children receiving various forms of mechanical ventilation, without addressing the impact on the family. Additionally, the literature inconsistently differentiates the unique experience of families with children using invasive home mechanical ventilation from non-invasive, which has lower morbidity and mortality and requires less nursing care in the home. Therefore, our study aims to explore and map the existing literature regarding the impact of invasive home mechanical ventilation on the child and family's quality of life. Identified gaps will inform future research focused on improving the family quality of life of children with invasive home mechanical ventilation. METHODS: Five databases will be searched using keywords and controlled vocabulary to identify relevant studies: Ovid Medline, Embase, Scopus, and Cochrane Library. English language studies will meet inclusion criteria if they include primary research studies of children or families of children utilizing invasive home mechanical ventilation at home and assess quality of life. Children and young adults aged 0-25 years will be included. We exclude studies of hospitalized children, studies focused solely on healthcare professional experiences or clinical outcomes, and those focused on the period surrounding discharge from admission for tracheostomy placement. Two independent reviewers will screen studies at the title/abstract and full-text levels. Two independent reviewers will extract data from relevant studies. Disagreements will be resolved by an independent third reviewer. A targeted grey literature search will be performed utilizing ProQuest, clinicaltrials.gov, WHO trial registry, Google Scholar, and professional societies. Findings will be presented in tables and figures along with a narrative summary. DISCUSSION: This scoping review seeks to map the literature and provide a descriptive report of the health-related quality of life of children using invasive home mechanical ventilation and their families. REGISTRATION: Open Science Framework https://doi.org/10.17605/OSF.IO/6GB84 Date of Registration: November 29, 2023.


Asunto(s)
Servicios de Atención de Salud a Domicilio , Calidad de Vida , Respiración Artificial , Humanos , Niño , Familia/psicología , Traqueostomía
5.
Sci Rep ; 14(1): 21357, 2024 09 12.
Artículo en Inglés | MEDLINE | ID: mdl-39266693

RESUMEN

When individuals face life pressure or significant family changes, individuals with better family adaptation can better survive the crisis. Although the influencing factors of family adaptation have been investigated, the application of potential profile analysis has yet to be found. This analytical approach can reveal different potential categories of family adaptation, providing new perspectives for theoretical development and interventions. This study used latent profile analysis to explore family adaptation levels in breast cancer patients and identify different latent categories, examining their characteristic differences. A cross-sectional study was conducted in Jinzhou, China, from July 2023 to March 2024. The questionnaire included Sociodemographic and clinical characteristics, Benefit Finding Scale (BFS), Dyadic Coping Scale (DCI), Chinese Perceived Stress Scales (PSS), and Family adaptability and cohesion evaluation scales (FACES). Mplus8.3 and SPSS26.0 software were used for data analysis. The latent profile analysis (LPA) method was used to fit the family adaptations of breast cancer patients. Three latent categories of family adaptation were identified: low-level family adaptation (21.5%), medium level family adaptation (47.8%), and high-level family adaptation (30.6%). All 14 items with high levels of family adaptation scored higher than the other two groups. In particular, out of all the categories, item 9, "The idea of educating children is sound," scored highest. Compared with the low-level group, the influential factors of family adaptation in the high-level group were BFS, DCI, PSS, relapse and personal monthly income; The factors influencing family adaptation at the middle level are DCI, BFS, breast cancer type, family history of breast cancer, and personal monthly income. Compared with the medium level group, PSS and DCI were the influential factors of family adaptation in the high-level group. Family adaptation in breast cancer patients can be divided into three categories: low-level, medium-level, and high-level. There were significant differences among different categories of family adaptation levels in "personal monthly income", "family history of breast cancer", "type of breast cancer", "recurrence", "dyadic coping", "benefit finding", and "perception stress".


Asunto(s)
Adaptación Psicológica , Neoplasias de la Mama , Humanos , Femenino , Neoplasias de la Mama/psicología , Estudios Transversales , Persona de Mediana Edad , Adulto , China , Encuestas y Cuestionarios , Familia/psicología , Estrés Psicológico/psicología , Anciano
6.
PLoS One ; 19(9): e0310300, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39288149

RESUMEN

While the occupational and health-related consequences of workplace bullying have received extensive research attention, the effects of workplace bullying on the family domain have been largely ignored. Based on the PRISMA framework, the Scopus, Web of Science, PsycINFO, and PubMed databases were searched up to May 12, 2024, for articles on associations between workplace bullying and family functioning. A total of 1347 articles were identified, of which 37 were found after review to meet the criteria for inclusion. All the included studies found a direct or indirect association between workplace bullying and family functioning. Most studies are grounded in the conservation of resources (COR) theory, spillover theory, crossover theory, and work-family interface model. Negative affect (emotions), work-family conflict (WFC), and burnout were considered essential mechanisms explaining the links between workplace bullying and family functioning, with personal resources (demands) as the main moderators. Most studies focus on the one-way impact of workplace bullying on family functioning, mainly using cross-sectional, non-randomized self-report designs. Future research will benefit from using a longitudinal design, continued characterization of the workplace bullying-family functioning relationship, including its nature, direction, processes, and boundary conditions in various industrial and cultural contexts, together with the use of models for the integration of research findings.


Asunto(s)
Acoso Escolar , Lugar de Trabajo , Humanos , Acoso Escolar/psicología , Lugar de Trabajo/psicología , Familia/psicología , Relaciones Familiares/psicología
7.
Int J Older People Nurs ; 19(5): e12647, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39277879

RESUMEN

BACKGROUND: Due to rapid increases in the number of Korean people with dementia, dementia has become a priority health issue in South Korea. Likewise, the well-being of family caregivers of people with dementia has also become an issue of concern. However, little is known about the resilience of Korean family caregivers because there is a lack of review studies from a Korean cultural perspective about the resilience of family caregivers of people with dementia. OBJECTIVES: The purpose of this scoping review was to investigate quantitative studies related to resilience theories, measurement instruments, correlates and resilience interventions for family caregivers of people with dementia. METHOD: This review was conducted according to the Joanna Briggs Institute based on Arksey and O'Malley. Nine databases were searched to retrieve evidence published in English or Korean between January 2000 and September 2022. Studies with a quantitative research design reporting the resilience of family caregivers of people with dementia based on a resilience theory framework were included. RESULTS: A total of 13 studies were included in this review. All studies used either a modified McCubbin and McCubbin's family stress, adjustment and adaptation model or Walsh's family resilience model. All resilience instruments were used without cross-cultural adaptation. Family adaptation, social support, life satisfaction, family (di)stress and caregiver burden were associated with resilience among family caregivers. A few family resilience-enhancing programmes showed a positive effect on caregiver resilience. CONCLUSION: This review noted that all the resilience measures documented in this study need to test for cultural adaptation in a Korean context. Further research is required to develop and implement family-based, culturally tailored interventions to effectively enhance Korean resilience for family caregivers of people with dementia. IMPLICATIONS FOR PRACTICE: Gerontological nurses should include Korean family caregivers in their nursing care and assess whether family caregivers have depression or suicidal thoughts to promote better health outcomes for caregivers and their family members.


Asunto(s)
Cuidadores , Demencia , Resiliencia Psicológica , Humanos , Cuidadores/psicología , Demencia/enfermería , Demencia/etnología , República de Corea/etnología , Adaptación Psicológica , Apoyo Social , Familia/psicología
8.
Int J Qual Stud Health Well-being ; 19(1): 2398201, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-39217523

RESUMEN

BACKGROUND: Loneliness is a public health concern and more than half of the residents in nursing homes experience lonliness. Risk factors are age and loss of close relatives. PURPOSE: This study aimed to describe experiences of loneliness among older people living in an academic nursing home. METHODS: Qualitative semi-structured interviews were conducted with ten older people and data analysed with systematic text condensation inspired by a phenomenological approach. RESULTS: Three themes were identified: "Relatives and health care professionals matter"; "Acceptance and meaningful existence alleviate loneliness"; and "Challenges affecting the experience of loneliness". The older persons described themselves as lonely, but their experience of loneliness differed. They managed loneliness by adapting to it or getting used to it; some also chose to be alone. To add meaningfulness to their daily life, talking about memories and their past were appriciated. Personality traits and variations in functional ability were identified as barriers to social interactions. CONCLUSIONS: Health care professionals can reduce negative experiences of loneliness by listening to nursing home residents, creating a meaningful daily life with individualized activities, and by encouraging contacts with close relatives. This can be a way of maintaining older persons' dignity and coping with the longing for what has been.


Asunto(s)
Soledad , Casas de Salud , Investigación Cualitativa , Humanos , Soledad/psicología , Masculino , Femenino , Anciano , Anciano de 80 o más Años , Adaptación Psicológica , Familia/psicología , Hogares para Ancianos , Personal de Salud/psicología , Interacción Social , Entrevistas como Asunto
9.
J Fam Nurs ; 30(3): 255-266, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39268852

RESUMEN

This study aimed to assess the feasibility of a complex family nursing intervention (SAFIR©) designed to support families of patients with acquired brain injuries during the early phase of hospitalization, using a one-group pre- and post-test design with a one-month follow-up. Family members participated in four family meetings. Quantitative data were collected using an intervention protocol checklist and questionnaires. Qualitative data were gathered through semi-structured interviews, written open-ended questions, and note-taking. Feasibility outcomes revealed a family recruitment rate of 15.4% and a retention rate of 100%. Protocol adherence ranged from 94% in Phase 1 to 78% in Phase 3. Our results indicated that the intervention was meaningful and suitable for family members (n=7), healthcare provider (n=1), and nursing managers (n=6). From a sustainability perspective, our findings suggest the need to formally involve the entire inter-professional team in the intervention. Further evaluation of the intervention is warranted through a large-scale experimental.


Asunto(s)
Lesiones Encefálicas , Familia , Estudios de Factibilidad , Hospitalización , Humanos , Masculino , Femenino , Persona de Mediana Edad , Lesiones Encefálicas/enfermería , Adulto , Familia/psicología , Anciano , Encuestas y Cuestionarios , Enfermería de la Familia/métodos , Enfermería de la Familia/normas , Investigación Cualitativa
10.
Rev Med Chil ; 152(1): 36-48, 2024 Jan.
Artículo en Español | MEDLINE | ID: mdl-39270095

RESUMEN

INTRODUCTION: The COVID-19 pandemic marked a milestone in the history of medicine worldwide. Together with the humanitarian drama it represented, the problems that arose are promoting lines of research in multiple fields. One of these fields is the aspects related to medical communication and end-of-life care. This paper reports the experiences and perceptions of relatives of patients who died during the pandemic with a psychospiritual support intervention in a public hospital in the Metropolitan Region, Chile, called "farewell". METHODS: A qualitative study was conducted with a phenomenological approach based on in-depth interviews. From this, categories were derived that allowed a systematization of the observation of the experiences. RESULTS: Among the results, the impact of the circumstances and the communication provided by the medical team on grief should be highlighted. The use of the word "farewell" emerges as a useful, albeit ambiguous, communicative tool when it comes to adequately framing an end-of-life process. CONCLUSIONS: It is argued that the end of life is an area that requires physical and psychospiritual spaces, and adequate training at all levels to do justice to a highly relevant moment in the care of people.


Asunto(s)
COVID-19 , Familia , Investigación Cualitativa , Cuidado Terminal , Humanos , COVID-19/psicología , COVID-19/epidemiología , Chile/epidemiología , Familia/psicología , Cuidado Terminal/psicología , Masculino , Femenino , SARS-CoV-2 , Actitud Frente a la Muerte , Adulto , Pandemias , Persona de Mediana Edad , Pesar , Entrevistas como Asunto , Anciano , Comunicación
11.
BMC Palliat Care ; 23(1): 226, 2024 Sep 12.
Artículo en Inglés | MEDLINE | ID: mdl-39266990

RESUMEN

BACKGROUND: Delivering serious news is usually challenging for healthcare professionals and the pandemic of COVID-19 and related restrictions brought additional challenges in this process. AIMS: To explore the experience of bereaved relatives with receiving serious news from healthcare professionals during the pandemic COVID-19. DESIGN: A qualitative study using thematic analysis and a codebook approach of data collected in semi-structured interviews with bereaved relatives. SETTING/PARTICIPANTS: Data were collected from July to August 2022 in person/via phone with bereaved relatives who lost their relatives during the pandemic (from March 2020 to March 2022). Participants were recruited using a convenience sample and snowball method through social media and through one university hospital palliative care unit that invited bereaved relatives of deceased patients treated at the unit to participate in this study. RESULTS: A total of 22 participants, consisting of 4 men and 18 women, were interviewed for this study. Most of the participants were sons or daughters of individuals who had died (5 grandchildren, 14 sons/daughters, 2 spouses, 1 great-niece). Six themes were identified: Burden caused by visit ban, Fear of COVID-19, Inappropriate behaviour and communication of healthcare professionals, High need for emotional support, Need for detailed and honest communication, Tendency to make excuses for mistakes and lapses by healthcare professionals. CONCLUSIONS: Delivering serious news during a pandemic was negatively influenced by a lack of contact with patients and a lack of support and empathetic communication with staff. Overcoming these circumstances can be achieved by frequent communication using various communication tools (such as videoconferences or phone calls), and maintaining empathy and honesty in the communication process.


Asunto(s)
Aflicción , COVID-19 , Familia , Pandemias , Investigación Cualitativa , Humanos , COVID-19/psicología , COVID-19/epidemiología , Femenino , Masculino , Persona de Mediana Edad , Familia/psicología , Adulto , Anciano , SARS-CoV-2 , Entrevistas como Asunto/métodos , Comunicación , Apoyo Social
12.
BMC Health Serv Res ; 24(1): 1058, 2024 Sep 12.
Artículo en Inglés | MEDLINE | ID: mdl-39267018

RESUMEN

BACKGROUND: Effective communication between patients and healthcare providers in the emergency department (ED) is challenging due to the dynamic nature of the ED environment. This study aimed to trial a chat service enabling patients in the ED and their family members to ask questions freely, exploring the service's feasibility and user experience. OBJECTIVES: To identify the types of needs and inquiries from patients and family members in the ED that could be addressed through the chat service and to assess the user experience of the service. METHODS: We enrolled patients and family members aged over 19 years in the ED, providing the chat service for up to 4 h per ED visit. Trained research nurses followed specific guidelines to respond to messages from the participants. After participation, participants were required to complete a survey. Those who agreed also participated in interviews to provide insights on their experiences with the ED chat service. RESULTS: A total of 40 participants (20 patients and 20 family members) sent 305 messages (72 by patients and 233 by family members), with patients sending an average of 3.6 messages and family members 11.7. Research nurses resolved 41.4% of patient inquiries and 70.9% of family member inquiries without further healthcare provider involvement. High usability was reported, with positive feedback on communication with healthcare workers, information accessibility, and emotional support. CONCLUSIONS: The ED chat service was found to be feasible and led to positive user experiences for both patients and their family members.


Asunto(s)
Servicio de Urgencia en Hospital , Familia , Humanos , Masculino , Femenino , Adulto , Familia/psicología , Persona de Mediana Edad , Comunicación , Anciano , Satisfacción del Paciente , Encuestas y Cuestionarios , Adulto Joven
13.
Int J Palliat Nurs ; 30(8): 444-450, 2024 Aug 02.
Artículo en Inglés | MEDLINE | ID: mdl-39276140

RESUMEN

BACKGROUND: In Indonesia, the diagnosis of a serious illness is often mediated through the patient's family, reflecting the cultural importance of family involvement in the patient's care and collective decision-making. AIM: To use a case study to show the difficulty that healthcare professionals face telling the patient the truth about their condition in Indonesia. METHOD: The Kagawa-Singer and Blackhall ABCDE framework was used during truth-telling dilemmas to assess patients' and families' attitudes (A), beliefs (B), contexts (C), decision-making styles (D) and environments (E). FINDINGS: Studies have shown that family involvement in health-related communications can alleviate the stress associated with the disclosure of a serious illness. Palliative care nurses must acknowledge the importance of family in the patient's cultural context, by involving them in the disclosure of a diagnosis and disease trajectory by integrating every element of the ABCDE model in palliative care.


Asunto(s)
Cuidados Paliativos , Revelación de la Verdad , Humanos , Indonesia , Relaciones Profesional-Familia , Femenino , Toma de Decisiones , Masculino , Familia/psicología , Adulto , Enfermería de Cuidados Paliativos al Final de la Vida , Actitud del Personal de Salud
14.
Sci Rep ; 14(1): 21171, 2024 09 11.
Artículo en Inglés | MEDLINE | ID: mdl-39256441

RESUMEN

Understanding what matters to people with Parkinson's and their family is essential to derive relevant clinical outcome measures and guide clinical care. The purpose of this study was to explore what is important to people with Parkinson's disease vs. family over time. A qualitative content-analysis of online survey data collected by Parkinson's UK was conducted to identify types and frequencies of important symptoms and impacts of Parkinson's for people with the disease vs. family of people with Parkinson's. Independent T-tests were used to identify significance of between group differences for patients vs. family at < 2, 2-5, 6-10, 11-20, > 20-year durations. ANOVA was used to assess for within group differences by disease duration. We found that symptom priority changed significantly over time with longer disease duration. Tremor was reported less often later on, whereas mobility, dyskinesias, gait and speech/communication symptoms gained priority. In general, patients identified movement-related symptoms (e.g., walking, bradykinesia) as the most bothersome at all durations while family more strongly prioritized the physical and psychosocial impacts of disease (e.g., mobility, safety, interpersonal interactions, independence, and family impact). We conclude that important differences exist between family and patient perspectives of what matters and change over time with longer duration of disease.


Asunto(s)
Familia , Enfermedad de Parkinson , Humanos , Enfermedad de Parkinson/psicología , Enfermedad de Parkinson/fisiopatología , Masculino , Femenino , Familia/psicología , Persona de Mediana Edad , Anciano , Encuestas y Cuestionarios , Calidad de Vida
15.
BMC Neurol ; 24(1): 333, 2024 Sep 10.
Artículo en Inglés | MEDLINE | ID: mdl-39256658

RESUMEN

BACKGROUND: Family members are often affected by the long-term consequences of traumatic brain injury, but are rarely involved in rehabilitation programs in the chronic phase. We thus do not know what family members´ main concerns are in the chronic phase, what factors are associated with perceived caregiver burden, and whether family members´ health and functioning improves due to rehabilitation efforts received by the patients. This study explored family-members` functioning, predictors of caregiver burden and effect for family members of a goal-oriented intervention in the chronic phase of traumatic brain injury. METHODS: Family members self-reported data measuring their caregiver burden, depression, general health, loneliness, and their evaluation of patient competency in everyday life, patient awareness levels, main problem areas (target outcomes) for the patient related to the brain injury, and demographic data were collected. Regression models were used to explore predictors of caregiver burden, and mixed models analysis was used to explore treatment effects. RESULTS: In total, 73 family members were included, 39 in the intervention group and 34 in the control group. Moderate to high caregiver burden was reported by 40% of family members, and 16% experienced clinical levels of depression. Family member loneliness and their evaluation of the patient`s level of functional competency explained 57% of the variability in caregiver burden. There were no treatment-related changes in caregiver burden, family member depression or general health. At T2 there was however a significant reduction in how family members rated severity of target outcomes that the family members had nominated at baseline (-0.38, 95% CI, -0.75 to -0.02, p = 0.04), but not for the target outcomes the patients had nominated. CONCLUSIONS: A significant proportion of family members to patients in the chronic phase of TBI continue to experience challenging caregiver burden and emotional symptoms. Both family member-related and patient factors contribute to caregiver burden. Interventions targeting patient complaints do not automatically alleviate family members´ burden. It is important to address social support for family members early after injury, and there is a need for more interventions specifically targeting family members´ needs. TRIAL REGISTRATION: The trial was registered at ClinicalTrials.gov, NCT03545594 on the 4th of June 2018.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Carga del Cuidador , Cuidadores , Humanos , Masculino , Femenino , Lesiones Traumáticas del Encéfalo/psicología , Lesiones Traumáticas del Encéfalo/rehabilitación , Lesiones Traumáticas del Encéfalo/terapia , Persona de Mediana Edad , Carga del Cuidador/psicología , Adulto , Cuidadores/psicología , Familia/psicología , Costo de Enfermedad , Anciano , Objetivos , Depresión/psicología , Depresión/etiología , Depresión/epidemiología , Resultado del Tratamiento , Carga Sintomática
16.
BMC Health Serv Res ; 24(1): 1044, 2024 Sep 10.
Artículo en Inglés | MEDLINE | ID: mdl-39256742

RESUMEN

BACKGROUND: Over the last decade attention has grown to give patients and next of kin (P/N) more substantial roles in adverse event investigations. Adverse event investigations occur after adverse events that resulted in death or severe injury. Few studies have focused on patient perspectives on their involvement in such investigations. The present study sets out to investigate how P/N and patient representatives (client councils and the Patient Federation Netherlands) view the involvement of P/N in adverse event investigations, particularly whether and why they want to involved, and how they want to shape their involvement. METHODS: The study features qualitative data on three levels: interviews with P/N (personal), focus groups with representatives of client councils (institutional), and an interview with the Patient Federation Netherlands (national). Researchers used inductive, thematic analysis and validated the results through data source triangulation. RESULTS: The initiative taken by the hospitals in this study provided P/N with the space to feel heard and a position as legitimate stakeholder. P/N appreciated the opportunity to choose whether and how they wanted to be involved in the investigation as stakeholders. P/N emphasized the need for hospitals to learn from the investigations, but for them the investigation was also part of a more encompassing relationship. P/N's views showed the inextricable link between the first conversation with the health care professional and the investigation, and the ongoing care after the investigation was finalized. Hence, an adverse event investigation is part of a broader experience when understood from a patient perspective. CONCLUSIONS: An adverse event investigation should be considered as part of an existing relationship between P/N and hospital that starts before the investigation and continues during follow up care. It is crucial for hospitals to take the initiative in the investigation and in the involvement of P/N. P/N motivations for involvement can be understood as driven by agency or communion. Agentic motivations include being an active participant by choice, while communion motivations include the need to be heard.


Asunto(s)
Grupos Focales , Errores Médicos , Investigación Cualitativa , Humanos , Países Bajos , Errores Médicos/psicología , Entrevistas como Asunto , Femenino , Masculino , Participación del Paciente , Familia/psicología , Persona de Mediana Edad , Seguridad del Paciente
17.
Front Public Health ; 12: 1392153, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39257952

RESUMEN

Background: As China has undergone the processes of urbanization and economic development, a large migrant population has emerged, creating new family migration trends. Family migration brings about changes in urban integration costs and benefits, affecting health investment. Objective: The primary objective of this research is to investigate the influence of urban integration of migrant workers' families on their mental wellbeing, with the aim of offering policy recommendations conducive to the realization of a comprehensive public health strategy in China. Methods: This paper uses multi-dimensional indexes to measure family urban integration, covering economic, social and psychological dimensions, which may consider the complexity of integration. Utilizing a machine learning clustering algorithm, the research endeavors to assess the level of urban integration experienced by migrant workers and their respective families. The analysis discerns three distinct clusters denoting varying degrees of urban integration within these familial units, namely high-level, medium-level, and low-level urban integration. We applied binary logit regression models to analyze the influence of family urban integration on the mental health among migrant workers. Then we conducted a series of robustness tests. Results: The results show that family urban integration decreases the probability of depressive symptoms by 14.6 percentage points. Further mechanism tests show that family economic integration enhances the psychological wellbeing of migrant workers by elevating their income status. Family social integration decreases depressive symptoms by increasing social status. Family psychological integration increases the psychological health of migrant workers by making them more satisfied with their lives. The heterogeneity test shows that family urban integration and its different dimensions have a strong impact on the depressive symptoms of women, first-generation, and less-educated groups. Conclusions: This study finds that family urban integration and its economic, social, and psychological dimensions significantly reduced the depressive symptoms of migrant workers. The results of this study lead the authors to recommend formulating a family-centered policy for migrant workers to reside in urban areas, optimizing the allocation of medical resources and public services, and improving family urban integration among migrant workers in order to avoid mental health problems in the process of urban integration.


Asunto(s)
Salud Mental , Migrantes , Humanos , China , Migrantes/psicología , Migrantes/estadística & datos numéricos , Femenino , Masculino , Adulto , Familia/psicología , Población Urbana/estadística & datos numéricos , Urbanización , Depresión/psicología , Depresión/epidemiología , Integración Social , Persona de Mediana Edad
18.
Nephrol Nurs J ; 51(4): 377-388, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39230467

RESUMEN

The objective of this systematic review was the evaluation of the burden of family caregivers of patients on hemodialysis and its correlation with caregivers' quality of life. Articles from PubMed and Scopus published between 2012 to 2022 were retrieved from using the key words burden, family caregivers, quality of life, and hemodialysis patients. Articles reviewed included quantitative data indicating the family caregiver burden ranged from moderate to severe. The correlation between burden and quality of life was negative. Nephrology nurses in hemodialysis units should contribute to the design and implementation of educational programs and support strategies for family caregivers of patients on hemodialysis to support caregivers, reduce their burden, and improve their quality of life.


Asunto(s)
Cuidadores , Calidad de Vida , Diálisis Renal , Humanos , Cuidadores/psicología , Costo de Enfermedad , Fallo Renal Crónico/enfermería , Fallo Renal Crónico/terapia , Familia/psicología , Carga del Cuidador/psicología
19.
Cogn Sci ; 48(9): e13484, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39228272

RESUMEN

When people talk about kinship systems, they often use co-speech gestures and other representations to elaborate. This paper investigates such polysemiotic (spoken, gestured, and drawn) descriptions of kinship relations, to see if they display recurring patterns of conventionalization that capture specific social structures. We present an exploratory hypothesis-generating study of descriptions produced by a lesser-known ethnolinguistic community to the cognitive sciences: the Paamese people of Vanuatu. Forty Paamese speakers were asked to talk about their family in semi-guided kinship interviews. Analyses of the speech, gesture, and drawings produced during these interviews revealed that lineality (i.e., mother's side vs. father's side) is lateralized in the speaker's gesture space. In other words, kinship members of the speaker's matriline are placed on the left side of the speaker's body and those of the patriline are placed on their right side, when they are mentioned in speech. Moreover, we find that the gesture produced by Paamese participants during verbal descriptions of marital relations are performed significantly more often on two diagonal directions of the sagittal axis. We show that these diagonals are also found in the few diagrams that participants drew on the ground to augment their verbo-gestural descriptions of marriage practices with drawing. We interpret this behavior as evidence of a spatial template, which Paamese speakers activate to think and communicate about family relations. We therefore argue that extending investigations of kinship structures beyond kinship terminologies alone can unveil additional key factors that shape kinship cognition and communication and hereby provide further insights into the diversity of social structures.


Asunto(s)
Cognición , Comunicación , Familia , Gestos , Humanos , Masculino , Femenino , Familia/psicología , Adulto , Habla , Persona de Mediana Edad
20.
Sci Rep ; 14(1): 20510, 2024 09 03.
Artículo en Inglés | MEDLINE | ID: mdl-39227747

RESUMEN

Cancer is a deadly disease that affects millions of people worldwide and is a source of great difficulty, stress, and trauma not only for patients but also for their caregivers. The physical and emotional suffering that patients experience by patients can lead their caregivers to cope with constant anxiety, sadness, and uncertainty. Moreover, during the cancer treatment process, caregivers must make a great effort to meet the needs of patients and support them. This situation may negatively affect the quality of life and psychological health of cancer patients' caregivers and may lead them to experience trauma. The aim of this cross-sectional study was to examine posttraumatic growth's relationship with age, the transformative power of suffering, and hope in family caregivers of cancer patients. Participants consisted of 314 Turkish family caregivers of cancer patients (73.2% women; Mage = 39.89 years) selected by using convenience sampling method. Participants answered a data collection tool consisting of a demographic information form, the Posttraumatic Growth Inventory, Trait Hope Scale, and Transformative Power of Suffering Scale. Data were analyzed using descriptive statistics, the Pearson product-moment correlation coefficient analysis, simple mediation analysis, and moderated mediation analysis. The results of this study revealed that hope mediated the association between the transformative power of suffering and posttraumatic growth in family caregivers of cancer patients, whereas age moderated this relationship. Psychosocial support programs for cancer caregivers could benefit from incorporating interventions that explore the transformative potential of suffering and cultivate hope. Tailoring these interventions to address the specific needs of different age groups may enhance their effectiveness. Future researchers should investigate the factors associated with posttraumatic growth in caregivers across diverse cultures, age ranges, and cancer diagnoses.


Asunto(s)
Cuidadores , Neoplasias , Crecimiento Psicológico Postraumático , Humanos , Femenino , Masculino , Cuidadores/psicología , Neoplasias/psicología , Adulto , Turquía , Persona de Mediana Edad , Estudios Transversales , Calidad de Vida , Adaptación Psicológica , Encuestas y Cuestionarios , Anciano , Adulto Joven , Familia/psicología , Esperanza , Estrés Psicológico/psicología
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