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1.
BMC Geriatr ; 24(1): 342, 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38622542

RESUMO

BACKGROUND: Family caregivers play a crucial role in providing physical, emotional, and social support to the elderly, allowing them to maintain their independence and stay in their preferred living environment. However, family caregivers face numerous challenges and require specific knowledge and skills to provide effective care. Therefore, understanding the knowledge and skills required for effective family caregiving in elderly home care is vital to support both the caregivers and the elderly recipients. METHODS: The research was carried out in Mekelle City, Ethiopia, utilizing the phenomenology study design and purposive sampling technique. A total of twenty-two in-depth interviews were conducted. Individuals with experience in providing care for elderly people in their homes were targeted. Data was gathered through the use of an open-ended guide, transcribed word-for-word, inputted into ATLAS.ti8 software, and translated. Codes and themes were then extracted from the transcribed data, and a thematic analysis was performed. To minimize personal biases, the collected data were coded independently by the data collection assistants and the PI. The analysis was carried out by authors who were not involved in the data collection process. The interviews were conducted in a quiet place. RESULTS: A total of 22 in-depth interviews were conducted as part of this research. The results indicated that although the participants had knowledge about common health problems experienced by older people, they were uninformed about how to manage these conditions at home and were unaware of specialized healthcare resources for the elderly. Furthermore, they had limited knowledge about suitable exercise routines, strategies to prevent falls, and home healthcare practices for older individuals. On the other hand, they exhibited a solid comprehension and awareness of abusive behaviors specifically directed at older adults. CONCLUSION: The results emphasized the importance of enhancing education and training for family caregivers in handling elderly health issues, raising awareness about specialized healthcare services catered to the elderly, improving understanding of activities of daily living (ADLs) and fall prevention, and offering inclusive training in healthcare tasks related to elder care. RECOMMENDATION: Participants should receive comprehensive education and training programs to enhance their knowledge and skills in managing these conditions. Efforts should also be made to raise awareness about the availability of geriatric hospitals or specialized nurses for the elderly. Participants need to be educated about suitable exercise routines for the elderly and fall prevention strategies. Healthcare skills training is also necessary for participants, focusing on activities such as wound dressing, vital sign monitoring, and establishing a specific schedule for changing positions.


Assuntos
Atividades Cotidianas , Serviços de Assistência Domiciliar , Humanos , Idoso , Instituição de Longa Permanência para Idosos , Apoio Social , Cuidadores/psicologia , Pesquisa Qualitativa , Família/psicologia
2.
BMJ Open ; 14(4): e080775, 2024 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-38580374

RESUMO

OBJECTIVE: The number of patients with end-stage kidney disease (ESKD) requiring renal replacement therapy in Sri Lanka is significantly rising. Most of these patients depend on haemodialysis, carrying a significant burden on their family caregivers. To develop care and support for both the patient and their family caregiver, it is crucial to understand how caregivers experience their caregiving situation. Therefore, this study aimed to explore family caregivers' experiences of burden and coping when caring for a family member receiving haemodialysis in the Sri Lankan context. DESIGN: Qualitative study with an exploratory design. SETTING: Family caregivers were recruited at a haemodialysis unit of a main government sector hospital in Sri Lanka between October and November 2021. PARTICIPANTS: A purposive sampling of 11 family caregivers who cared for a family member receiving haemodialysis in a main government teaching hospital in Sri Lanka for at least 3 consecutive months. Data were collected through individual semistructured telephone interviews and analysed using qualitative content analysis. RESULTS: The results showed an overarching theme, 'striving to hold on and not let go', with four categories: (1) feeling exhausted by the care burden, (2) feeling burdened as failing the care responsibility, (3) striving to cope and find meaning in caregiving, and (4) coping with caregiving through others' support. CONCLUSION: The results show that the family caregivers have a multifaceted burden. They continued caring for their family member receiving haemodialysis while making adjustments to the burdensome caregiving situation despite many constraints and suffering. Psychosocial support and financial assistance, including family counselling, are needed by family caregivers, through a community support system, to ensure endurance during their family members' illness trajectory. Advance care planning is vital to alleviate care uncertainty and to meet the care needs of patients with ESKD, particularly in resource-constrained settings.


Assuntos
Cuidadores , Falência Renal Crônica , Humanos , Cuidadores/psicologia , Fardo do Cuidador , Diálise Renal/psicologia , Sri Lanka , Unidades Hospitalares de Hemodiálise , 60670 , Família/psicologia , Falência Renal Crônica/terapia , Pesquisa Qualitativa
3.
BMJ Open ; 14(4): e081364, 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38589261

RESUMO

OBJECTIVES: This study aims to understand the caregiving experiences of family caregivers of people with schizophrenia in a community. DESIGN: A qualitative study based on phenomenological analysis was conducted through in-depth interviews. SETTING: This study was carried out from May to June 2023 in two community health service centres in urban Beijing, China. PARTICIPANTS: We selected 16 family caregivers for interviews using purposive sampling method. RESULTS: Four themes and 10 subthemes were identified: (1) psychosocial distress of family caregivers (feeling unprepared and helpless at the beginning, confronting negative emotions in long-term care and straying away from social life); (2) adverse impacts on the whole family (poor cooperation within the family, insufficient family involvement in professional care); (3) coping with family caregiving (accepting the reality of the patients' illness, struggling with family life balance and having realistic expectations); (4) concerns about future care (daily living support, physical health management). CONCLUSION: Family caregivers experienced psychosocial distress and family stress in the process of caregiving. They had to cope with caregiving stress and were concerned about the long-term care of people with schizophrenia. These findings provide implications for intervention programmes to strengthen social support, family involvement, and active coping for caregivers and develop long-term care mechanisms for people with schizophrenia.


Assuntos
Cuidadores , Esquizofrenia , Humanos , Pequim , Cuidadores/psicologia , Estresse Psicológico/psicologia , China , Pesquisa Qualitativa , Família/psicologia , Adaptação Psicológica
4.
Pap. psicol ; 45(1): 39-47, Ene-Abr, 2024. ilus, tab
Artigo em Inglês, Espanhol | IBECS | ID: ibc-229715

RESUMO

El presente estudio es una revisión sistemática de las investigaciones realizadas sobre el funcionamiento familiar en familias con niños con una enfermedad poco frecuente. La búsqueda se realizó en las bases de datos Pubmed, EBSCO y Google Académico, siguiendo los lineamientos PRISMA. Luego de aplicar los criterios de inclusión y exclusión a los artículos 460 encontrados inicialmente, un total de 55 artículos conformaron la muestra final. A partir del análisis de los resultados se establecieron las siguientes temáticas abordadas en relación al funcionameinto familiar: impacto del diagnóstico; función y responsabilidades del cuidador; funcionamiento familiar; impacto en la esfera emocional; efectos en la vida conyugal y social; estrategias de afrontamiento; familia, cuidados y sistema de salud. Los hallazgos de este estudio pueden proporcionar una justificación para considerar los factores asociados al funcionamiento familiar al momento de dar el diagnóstico de una EPOF y pensar un tratamiento.(AU)


The present study is a systematic review of the research on family functioning in families who have a child with a rare disease. The research was carried out using the databases Pubmed, EBSCO, and Google Scholar, following PRISMA guidelines. After applying the inclusion and exclusion criteria to the 460 articles initially found, a total of 55 articles made up the final sample. The following topics regarding family functioning were identified: impact of diagnosis; caregiver’s role and responsibilities; family functioning; impact on the emotional sphere; effects on marital and social life; coping strategies; family, and care and health system. The results of this study may provide justification for considering factors associated with family functioning when diagnosing a rare disease and deciding on treatment.(AU)


Assuntos
Humanos , Masculino , Feminino , Criança , Cuidadores/psicologia , Psicologia , Doenças Raras , Família/psicologia , Adaptação Psicológica
5.
Front Public Health ; 12: 1334842, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38584929

RESUMO

Background: Cancer is a significant public health issue, causing various challenges for individuals affected by it. As cancer progresses, patients often become dependent on others for support. Family caregivers and members play a crucial role in the recovery and rehabilitation of these patients. However, caregivers themselves face numerous challenges throughout the course of their family member's illness. Exploring the experiences of family caregivers can inform long-term planning and supportive interventions to address their caregiving difficulties. This study reviews previous literature on caregiving outcomes. Method: This study presents a narrative review of qualitative studies, analyzing a total of 23 articles. The results were extracted and organized into subcategories. After revision by the research team, main categories were identified. These categories encompass both positive and negative outcomes of caregiving. Results: The findings of this review demonstrate that caring for a family member with cancer has significant implications for caregivers. These implications include: (A) Positive outcomes of caregiving (such as achieving self-management and balance, promoting kinship intimacy, finding meaning and purpose, and experiencing spiritual growth) and (B) Negative outcomes of caregiving (including care-related physical exhaustion, disruption of personal life plans, psycho-emotional consequences, and socio-economic burden). Conclusion: The results of this study highlight the challenges faced by family caregivers and emphasize the importance of addressing their needs within the healthcare system. By providing support and attention to their well-being, caregivers can enhance their resilience and adaptability in managing caregiving difficulties.


Assuntos
Cuidadores , Neoplasias , Humanos , Cuidadores/psicologia , Família/psicologia , Pesquisa Qualitativa
6.
West J Nurs Res ; 46(5): 344-355, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38551329

RESUMO

INTRODUCTION: Vascular dementia and heart failure (HF) are common co-existing conditions among adult populations. Each condition requires extensive home caregiving from family caregivers, especially those in rural Appalachia. This study aimed to assess caregivers' burden and their physical and mental health status, as well as explore their experiences and needs. METHODS: This study used an exploratory mixed-methods design combining quantitative and qualitative research (N = 20 caregivers). We collected data using questionnaires, short-answered interviews, and focus group discussions. The multivariable generalized linear model (GLiM) was used to analyze quantitative data; content analysis was used for qualitative data. RESULTS: The average age of family caregivers was 64.95 years. The generalized linear model showed that the caregiving burden was associated with caregivers' depression/anxiety (r = 0.68, P < .001) and their number of dementia caregiving years (r = 0.54, P < .05). Caregivers' poor physical health status was associated with better preparedness for HF and dementia home caregiving (r = 0.52, P < .05) and male caregivers (r = -0.46, P < .01). Caregivers' mental health status was associated with depression/anxiety (r = -0.80, P < .001). The qualitative data identified key caregiving themes: emotional impact and physical demands of caregiving, lack of help in rural areas, dealing with multiple disease progression, and relationship changes with their loved ones. CONCLUSION: Caregiving burden was associated with caregivers' home care responsibilities and the need for support. Nurse-led home caregiving preparedness interventions tailored for family caregivers of patients with HF and dementia in rural areas are recommended.


Assuntos
Demência Vascular , Insuficiência Cardíaca , Serviços de Assistência Domiciliar , Adulto , Humanos , Masculino , Pessoa de Meia-Idade , Idoso , Cuidadores/psicologia , Pesquisa Qualitativa , Insuficiência Cardíaca/complicações , Família/psicologia
7.
BMC Geriatr ; 24(1): 246, 2024 Mar 11.
Artigo em Inglês | MEDLINE | ID: mdl-38468202

RESUMO

BACKGROUND: Older adults with frailty have surgery at a high rate. Informal caregivers often support the postoperative transition in care. Despite the growing need for family and caregiver support for this population, little is known about the experience of providing informal care to older adults with frailty during the postoperative transition in care. The purpose of this study was to explore what is important during a postoperative transition in care for older adults with frailty from the perspective of informal caregivers. METHODS: This was a qualitative study using an interpretive description methodology. Seven informal caregivers to older adults [aged ≥ 65 years with frailty (Clinical Frailty Scale score ≥ 4) who had an inpatient elective surgery] participated in a telephone-based, semi-structured interview. Audio files were transcribed and analyzed using reflexive thematic analysis. RESULTS: Four themes were constructed: (1) being informed about what to expect after surgery; (2) accessible communication with care providers; (3) homecare resources are needed for the patient; and (4) a support network for the caregivers. Theme 4 included two sub-themes: (a) respite and emotional support and (b) occupational support. CONCLUSIONS: Transitions in care present challenges for informal caregivers of older adults with frailty, who play an important role in successful transitions. Future postoperative transitional care programs should consider making targeted information, accessible communication, and support networks available for caregivers as part of facilitating successful transitions in care.


Assuntos
Cuidadores , Fragilidade , Humanos , Idoso , Cuidadores/psicologia , Fragilidade/diagnóstico , Fragilidade/terapia , Aconselhamento , Pesquisa Qualitativa , Família/psicologia
8.
Nurs Open ; 11(3): e2139, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38488440

RESUMO

AIM: The purpose of this study was to understand the caregiving experiences of breast cancer family caregivers and explore the profound impacts of those experiences on their quality of life. DESIGN: A qualitative research method was used. METHODS: We extended invitations to 23 family caregivers of outpatients and inpatients receiving breast surgery and oncology treatments in Taiyuan, China, to participate in semi-structured interviews. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse the interview data. RESULTS: Four themes and associated categories were identified: (1) changes in family dynamics, (2) the socio-medical context, (3) interactions between family and society, (4) self-efficacy and nine subthemes and their related categories, where virtually all participants expressed future uncertainty, emotional contagion, and personal challenges, and self-efficacy had a moderating influence on the first three themes. PATIENT OR PUBLIC CONTRIBUTION: This study did not involve direct participation of patients or the public. However, their experiences and perspectives on caregiving were indirectly reflected through the insights provided by the family caregivers who participated in the interviews. Their valuable input contributed to a deeper understanding of the caregiving experience and its impact on the quality of life for Chinese breast cancer family caregivers.


Assuntos
Neoplasias da Mama , Cuidadores , Humanos , Feminino , Cuidadores/psicologia , Família/psicologia , Qualidade de Vida , Pesquisa Qualitativa
9.
Clin Interv Aging ; 19: 481-490, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38500496

RESUMO

Background: As the global population ages, the demand for family caregivers is expected to increase, underscoring the necessity to comprehend their support needs and challenges they face. However, caregiving often comes with various challenges and support needs that require attention. This study was aimed to gain an in-depth understanding of the support needs and challenges faced by family caregivers who provide care to their elderly loved ones at home. Methods: The study was conducted in Mekelle City, Ethiopia from December 2022 to October 2023 using a phenomenology study design and purposive sampling technique. A total of twenty-two in-depth interviews were conducted using an open-ended guide. The interviews were transcribed verbatim, entered into ATLAS.ti8 software, translated, and analyzed using a thematic analysis. Results: The study found that family caregivers face communication, financial, medication management, and transportation challenges in caring for elderly relatives at home. It also highlighted several key support needs of family caregivers in the care of elderly relatives at home. These includes financial assistance, training, access to information, and support from healthcare professionals. Limitations: Qualitative research, by its nature, is subjective as it relies on the perceptions and interpretations of the participants. Moreover, in qualitative studies, researchers typically work with a limited number of participants, in qualitative studies, researchers typically work with a limited number of participants, resulting in conclusions that may not reflect the experiences of all family caregivers. Conclusion: This qualitative study underscored the multitude of challenges faced by family caregivers in their role as primary caregivers for elderly relatives. The research also highlighted the pressing need for support systems that would address the physical, emotional, financial, and informational needs of these caregivers.


Assuntos
Cuidadores , Pessoal de Saúde , Humanos , Idoso , Cuidadores/psicologia , Emoções , Comunicação , Pesquisa Qualitativa , Família/psicologia
10.
BMC Psychol ; 12(1): 173, 2024 Mar 26.
Artigo em Inglês | MEDLINE | ID: mdl-38528601

RESUMO

BACKGROUND: The broad implications of caring for a family member with a chronic medical condition, such as MS, can lead caregivers to experience a high burden of care. The aim of the study was to describe profile of MS caregivers and their burden and to explore potential factors influencing this burden. METHODS: 200 family caregivers of a person with MS completed survey questionnaires across a cross-sectional study. Many information were collected: caregiver socio-demographic and health-related data, caregiving activities, knowledge of MS, coping strategies, mood, social support received and care recipient information. Caregiving burden was measured by the ZBI (Zarit Burden Interview). The extent to which the variables explained caregiver burden was analyzed using a hierarchical approach. RESULTS: 68% of the caregivers reported a perceived burden of care (ZBI score > 20). Our results show that physical and mental related-health variables are important predictive factors of the care burden, explaining much of the observed variance (40.9%). CONCLUSION: Family caregivers in MS continue to make up the shortfall produce by national health and welfare systems. We highlighted the importance of good physical and mental health in decreasing perceived burden. Working to alleviate psychological distress through mechanisms focus on reducing worries and perceived burden may be a valid approach.


Assuntos
Cuidadores , Esclerose Múltipla , Humanos , Cuidadores/psicologia , Estudos Transversais , Esclerose Múltipla/terapia , Família/psicologia , Saúde Mental , Inquéritos e Questionários
11.
Semin Speech Lang ; 45(2): 152-166, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38408596

RESUMO

Treatment for people with aphasia mainly concentrates on facilitating the communication of needs or providing facts. This focus is in danger of downplaying the significance of the expression of attitudes and emotion. Evaluative expression is critical for recreating identity and social interaction. However, the linguistic expression of emotions following aphasia has been insufficiently explored. This study aimed to determine which semantic-lexical devices people with aphasia used to express their opinions and views about their clinicians and rehabilitation. In-depth interviews with 50 people with aphasia describing their emotions during their rehabilitation were analyzed using the appraisal framework comprising appreciation, affect, and judgment. Speakers also graded their attitudes toward people, things, or events. Almost half of instances expressed appreciation, over one-third expressed judgment, and about 16% expressed affect. Amplification of emotions was used frequently, in over 40% of instances. Affective difficulties following aphasia and other brain injuries are among the most important factors for rehabilitation, social reintegration, and the burden on family members. To ameliorate these issues, the focus of rehabilitation in aphasia needs to shift from expressing needs toward facilitating the expression of opinions and feelings and providing people with aphasia with the opportunities and means to express their views on their healthcare.


Assuntos
Afasia , Humanos , Afasia/reabilitação , Comunicação , Emoções , Família/psicologia , Linguística
12.
Issues Ment Health Nurs ; 45(3): 322-330, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38412043

RESUMO

In forensic mental health care (FMHC), family caregivers perceive themselves as burdened in their relationships with the service user (the family member with mental illness) and by difficult collaboration with healthcare professionals (HCPs). There is a political objective to involve this group in the care and treatment of the service user in mental health care. To improve family caregiver involvement in care and treatment in FMHC, research about their perceptions is needed. This study aims to explore family caregivers' perceptions of their interactions with the service user and HCPs. The method used was qualitative. Semi-structured, in-depth interviews with 12 family caregiver participants were carried out and analyzed thematically. The analysis resulted in three interrelated main themes: Strategies to normalize everyday living; Distrust of the quality of care; and Loss and grief. Family caregiver feelings of loss and grief may be suppressed, which additionally could prevent them from supporting the service user.


Assuntos
Cuidadores , Transtornos Mentais , Humanos , Cuidadores/psicologia , Saúde Mental , Pesquisa Qualitativa , Pessoal de Saúde/psicologia , Transtornos Mentais/terapia , Transtornos Mentais/psicologia , Família/psicologia
13.
Support Care Cancer ; 32(3): 167, 2024 Feb 19.
Artigo em Inglês | MEDLINE | ID: mdl-38374479

RESUMO

OBJECTIVE: In China, bladder tumors rank first for morbidity and mortality among urological and reproductive system tumors. Total radical cystectomy plus urinary flow conversion is the gold standard for the treatment of muscle-layer invasive bladder cancer. With an increasing number of radical cystectomies each year, the number of patients living with urostomy is growing. After discharge, primary care of urostomy patients is given at home, and high demands are placed on home caregivers due to issues of privacy and the complexity of replacing the urostomy device. This research explored the challenges faced by the family caregivers of urostomy patients. METHODS: We used descriptive qualitative research methods to conduct interviews with twenty-five family caregivers of patients with urostomy. Survey subjects were from five general hospitals. All interviews were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Three critical challenges were identified-confusion, family crisis, and struggle psychology. Within these three themes, six sub-themes were constructed by coders. They were knowledge and skill deficiency, strong insecurities and uncertainties, role conflict, economic burden, emotional overwhelmed and calm acceptance. CONCLUSION: Family caregivers play a critical role in patient care, and especially in urostomy care. Caregiving is associated with significant challenges that hinder the family caregiver's ability to effectively care for the patient, further diminishing the caregiver's quality of life. Therefore, healthcare professionals should consider the challenges faced by family caregivers and take measures to obviate them through education, preparation, and support.


Assuntos
Cuidadores , Neoplasias da Bexiga Urinária , Humanos , Cuidadores/psicologia , Qualidade de Vida , Emoções , Família/psicologia , Pesquisa Qualitativa
14.
J Clin Ethics ; 35(1): 70-75, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38373329

RESUMO

AbstractOrgan procurement organization (OPO) staff play an essential role in the facilitation of organ donation as they guide family members and loved ones of dying patients through the donation process. Throughout the donation process, OPO staff must assume the role of a dual advocate, considering both the interests of the donor (which often include the wishes of the donor's family) and the interests of potential recipient(s). The benefits of this role are well established; however, minimal literature exists on the ways this role can cause moral distress in OPO staff, who frequently face scenarios in which adhering to the wishes of a donor family may compromise donation potential but failing to honor donor family requests may result in further emotional burden for the family. Given the frequency with which these ethically complex situations exist during donation, OPO staff are at heightened risk for experiencing moral distress and burnout, yet they are seldom acknowledged in the existing moral distress literature. As a result, it is unclear whether the current practices available to mitigate moral distress are beneficial for this population.


Assuntos
Transplante de Órgãos , Obtenção de Tecidos e Órgãos , Humanos , Doadores de Tecidos/psicologia , Família/psicologia , Princípios Morais
15.
J Clin Ethics ; 35(1): 54-58, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38373333

RESUMO

AbstractTo examine the ethical duty to patients and families in the setting of the resuscitation bay, we address a case with a focus on providing optimal care and communication to family members. We present a case of nonsurvivable traumatic injury in a minor, focusing on how allowing family more time at the bedside impacts the quality of death and what duty exists to maintain an emotionally optimal environment for family grieving and acceptance. Our analysis proposes tenets for patient and family-centric care that, in alignment with trauma-informed care principles, optimize the long-term well-being of the family, namely valuing family desires and sensitivity to location.


Assuntos
Baías , Ressuscitação , Humanos , Ressuscitação/psicologia , Família/psicologia
16.
BMC Med Inform Decis Mak ; 24(1): 46, 2024 Feb 12.
Artigo em Inglês | MEDLINE | ID: mdl-38347583

RESUMO

BACKGROUND: In the intensive care unit (ICU) relatives play a crucial role as surrogate decision-makers, since most patients cannot communicate due to their illness and treatment. Their level of involvement in decision-making can affect their psychological well-being. During the COVID-19 pandemic, relatives' involvement probably changed. We aim to investigate relatives' involvement in decision-making in the ICU before and during the pandemic and their experiences and preferences in this regard. METHODS: A mixed-methods study among relatives of ICU patients admitted to an ICU before or during the COVID-19 pandemic. Relatives in six ICUs completed a questionnaire (n = 329), including two items on decision-making. These were analysed using descriptive statistics and logistic regression analyses. Subsequently, relatives (n = 24) were interviewed about their experiences and preferences regarding decision-making. Thematic analysis was used for analysing the qualitative data. RESULTS: Nearly 55% of the relatives indicated they were at least occasionally asked to be involved in important treatment decisions and of these relatives 97.1% reported to have had enough time to discuss questions and concerns when important decisions were to be made. During the first COVID-19 wave relatives were significantly less likely to be involved in decision-making compared to relatives from pre-COVID-19. The interviews showed that involvement varied from being informed about an already made decision to deliberation about the best treatment option. Preferences for involvement also varied, with some relatives preferring no involvement due to a perceived lack of expertise and others preferring an active role as the patient's advocate. Discussing a patient's quality of life was appreciated by relatives, and according to relatives healthcare professionals also found this valuable. In some cases the preferred and actual involvement was in discordance, preferring either a larger or a smaller role. CONCLUSIONS: As treatment alignment with a patient's values and preferences and accordance between preferred and actual involvement in decision-making is very important, we suggest that the treatment decision-making process should start with discussions about a patient's quality of life, followed by tailoring the process to relatives' preferences as much as possible. Healthcare professionals should be aware of relatives' heterogeneous and possibly changing preferences regarding the decision-making process.


Assuntos
COVID-19 , Pandemias , Humanos , Qualidade de Vida , Unidades de Terapia Intensiva , Cuidados Críticos , Família/psicologia , Tomada de Decisões
17.
Dtsch Med Wochenschr ; 149(5): 211-215, 2024 Mar.
Artigo em Alemão | MEDLINE | ID: mdl-38350605

RESUMO

Relatives of intensive care patients make an important contribution to recovery and perform a variety of tasks. Due to the demands on the relatives and their services in the ICU and after their discharge, stressful psychological, physical, social, and financial consequences can arise or worsen. Relatives often compensate deficiencies in treatment, especially through a lack of communication and a lack of continuity of care. Seamless care for patients in the ICU and afterwards reduces avoidable consequences for relatives. Structured communication between relatives and the treatment team as well as active involvement in nursing treatments can alleviate stress symptoms and the feeling of powerlessness. Prescient discharge management for ICU patients and their relatives reduces PICS risk. Specific and comprehensive offerings of advice and support for relatives can help to perform and process the effort between everyday life and care tasks.


Assuntos
Cuidadores , Unidades de Terapia Intensiva , Humanos , Cuidadores/psicologia , Estresse Psicológico/psicologia , Cuidados Críticos , Ansiedade , Família/psicologia
18.
J Intensive Care Med ; 39(5): 499-504, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38374623

RESUMO

Background: Family-centered rounds (FCR) reduce the risk of psychological comorbidities of family members and improve the quality of communication between providers and families. Materials and methods: We conducted a pilot quality improvement study analyzing family perceptions of virtual FCR. Family members of previously admitted cardiac ICU patients who participated in at least one session of virtual FCR between April 2020 and June 2021 at Massachusetts General Hospital were surveyed post-ICU discharge. Results: During the study, 82 family members enrolled and participated in virtual FCR with 29 completing the post-admission telephone survey. Many cardiac ICU patients were male (n = 53), and a majority were discharged home (43%) with the patient's wives being the most common respondents to the questionnaire (n = 18). Across all questions in the survey, more than 75% of the respondents perceived the highest level of care in trust, communication, relationship, and compassion with their provider. Participants perceived the highest level of care in trust (96%), explanation (88%), as well as care and understanding (89%). Conclusions: Family members of cardiac ICU patients positively rated the quality of communication and perceived a high level of trust and communication between their providers on the virtual format.


Assuntos
Unidades de Terapia Intensiva , Visitas com Preceptor , Humanos , Masculino , Feminino , Família/psicologia , Comunicação , Relações Profissional-Família
20.
Sci Rep ; 14(1): 4562, 2024 02 24.
Artigo em Inglês | MEDLINE | ID: mdl-38402273

RESUMO

During intensive care unit admission, relatives of critically ill patients can experience emotional distress. The authors hypothesized that families of patients who are diagnosed with intensive care unit (ICU) delirium experience more profound depression and anxiety disorders related to stress than do families of patients without delirium. We performed a prospective observational single-center study including families of adult patients (age above 18 years) hospitalized in a 17-bed ICU of a university hospital for at least 48 h who completed research questionnaires at day 2 after admission and day 30 after initial evaluation using dedicated questionnaires (HADS, CECS, IES, PTSD-C). A total of 98 family members of patients hospitalized in the ICU were included in the final analysis (50 family members whose relatives were CAM-ICU positive (DEL+), and 48 family members of patients without delirium (DEL-)). No statistically significant differences in demographics and psychosocial data were found between the groups. In the follow-up 30 days after the first conversation with a family member, the mean PTSD score for the relatives of patients with delirium was 11.02 (Me = 13.0; SD = 5.74), and the mean score for nondelirious patients' family members was 6.42 (Me = 5.5; SD = 5.50; p < 0.001). A statistically significant increase in IES scores for family members of patients with delirium was observed for total PTSD (p = 0.001), IES-intrusion (p < 0.001), and IES-hyperarousal (p = 0.002). The prevalence of anxiety symptoms, depression, and posttraumatic stress disorder (PTSD) was higher in families of patients diagnosed with ICU delirium within 48 h of admission to the ICU. No factors increasing the depth of these disorders in family members of patients with ICU delirium were identified. Taking appropriate actions and thus providing families with appropriate support will contribute to the understanding of unfavorable emotional states, including anxiety, stress, depression, anger, agitation, or avoidance.


Assuntos
Delírio , Transtornos de Estresse Pós-Traumáticos , Adulto , Humanos , Adolescente , Estado Terminal/psicologia , Estudos Prospectivos , Ansiedade/epidemiologia , Ansiedade/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Unidades de Terapia Intensiva , Família/psicologia , Delírio/epidemiologia , Depressão/epidemiologia , Depressão/psicologia
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