RESUMO
BACKGROUND: This study aimed to clarify the situation and evaluate the communication on anticancer treatment discontinuation from the viewpoint of a bereaved family, in reference to the concept of nudges. METHODS: A multi-center questionnaire survey was conducted involving 350 bereaved families of patients with cancer admitted to palliative care units in Japan. RESULTS: The following explanations were rated as essential or very useful: (i) treatment would be a physical burden to the patient (42.9%), (ii) providing anticancer treatment was impossible (40.5%), (iii) specific disadvantages of receiving treatment (40.5%), (iv) not receiving treatment would be better for the patient (39.9%) and (v) specific advantages of not receiving treatment (39.6%). The factors associated with a high need for improvement of the physician's explanation included lack of explanation on specific advantages of not receiving treatment (ß = 0.228, P = 0.001), and lack of explanation of 'If the patient's condition improves, you may consider receiving the treatment again at that time.' (ß = 0.189, P = 0.008). CONCLUSIONS: Explaining the disadvantages of receiving treatment and the advantages of not receiving treatment, and presenting treatment discontinuation as the default option were effective in helping patients' families in making the decision to discontinue treatment. In particular, explanation regarding specific advantages of not receiving treatment was considered useful, as they caused a lower need for improvement of the physicians' explanation.
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Luto , Comunicação , Família , Neoplasias , Humanos , Masculino , Feminino , Neoplasias/tratamento farmacológico , Neoplasias/psicologia , Neoplasias/terapia , Família/psicologia , Idoso , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto , Suspensão de Tratamento , Cuidados Paliativos/psicologia , Japão , Relações Médico-Paciente , Idoso de 80 Anos ou mais , Tomada de DecisõesRESUMO
AIM: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. DESIGN: A qualitative interview study. METHODS: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. RESULTS: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. CONCLUSION: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. IMPACT: Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. REPORTING METHOD: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. PATIENT OR PUBLIC CONTRIBUTION: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.
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Tomada de Decisões , Família , Pessoal de Saúde , Pesquisa Qualitativa , Assistência Terminal , Humanos , Masculino , Assistência Terminal/psicologia , Feminino , Pessoa de Meia-Idade , Família/psicologia , Idoso , Dinamarca , Pessoal de Saúde/psicologia , Adulto , Idoso de 80 Anos ou mais , Insuficiência Renal/terapia , Insuficiência Renal/psicologiaRESUMO
AIM: To determine and describe what interventions exist to improve nurse-family communication during the waiting period of an emergency department visit. BACKGROUND: Communication between nurses and families is an area needing improvement. Good communication can improve patient outcomes, satisfaction with care and decrease patient and family anxiety. DESIGN: Scoping Review. METHODS: A scoping review was conducted following the Joanna Briggs Institution methodology: (1) identify the research question, (2) define the inclusion criteria, (3) use a search strategy to identify relevant studies using a three-step approach, (4) select studies using a team approach, (5) data extraction, (6) data analysis, and (7) presentation of results. DATA SOURCES: Medline, CINAHL, EMBASE, PsychInfo and grey literature were searched on 3 August 2022. RESULTS: The search yielded 1771 articles from the databases, of which 20 were included. An additional seven articles were included from the grey literature. Paediatric and adult interventions were found targeting staff and family of which the general recommendations were summarised into communication models. CONCLUSION: Future research should focus on evaluating the effectiveness of interventions using a standardised scale, understanding the specific needs of families, and exploring the communication models developed in this review. IMPLICATIONS FOR CLINICAL PRACTICE: Communication models for triage nurses and all emergency department nurses were developed. These may guide nurses to improve their communication which will contribute to improving family satisfaction. REPORTING METHOD: PRISMA-ScR. TRIAL AND PROTOCOL REGISTRATION: Protocol has been registered with the Open Science Framework, registration number 10.17605/OSF.IO/ETSYB. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.
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Comunicação , Serviço Hospitalar de Emergência , Relações Profissional-Família , Humanos , Adulto , Família/psicologia , Recursos Humanos de Enfermagem Hospitalar/psicologia , Feminino , MasculinoRESUMO
AIMS AND OBJECTIVES: (I) To identify the opinion and practices of nursing professionals regarding the presence of family members during invasive procedures in hospitalised children; (II) to determine the knowledge of nursing professionals about the patient-and family-centred care model. BACKGROUND: Family presence in invasive procedures benefits the patient and their relatives, but varied attitudes exist among healthcare personnel, with some being favourable and others unfavourable toward family presence. DESIGN: Observational, descriptive, cross-sectional study. METHODS: Study population: Nurses from paediatric critical care services, emergency services, hospital wards, day hospitals and outpatient clinics at a Catalan tertiary hospital who participated voluntarily between September 2021 and July 2022. Data collection instrument: A questionnaire prepared by the researchers, based on the literature and reviewed by experts. REDCap link with access to the questionnaire was sent out to potential respondents through the institutional email. Bivariate analysis was performed with the R 4.2 program. The study was approved by the hospital's Clinical Research Committee and participants gave informed consent before responding to the questionnaire. RESULTS: A total of 172 nurses participated, and 155 valid responses were obtained. All respondents consider the family as a key element in paediatric care and report inviting family members to participate in the care given to their child. However, 12.0% of nurses do not invite the family to be present in invasive procedures. Almost all respondents note the need for training to acquire communication skills and improve the management of emotions. CONCLUSIONS: The results show a favourable opinion towards the presence of family members and highlight the need to train nurses to develop communication skills. RELEVANCE TO CLINICAL PRACTICE: The data provided can favour the design of measures to improve and promote the presence of parents during invasive procedures, reinforcing the patient-and family-centred care model and improving the quality of care provided. One example is the creation of family care protocols where the inclusion of parents and the roles of each individual involved in the care process appears.
Assuntos
Atitude do Pessoal de Saúde , Criança Hospitalizada , Família , Humanos , Estudos Transversais , Inquéritos e Questionários , Família/psicologia , Masculino , Adulto , Feminino , Criança , Criança Hospitalizada/psicologia , Recursos Humanos de Enfermagem Hospitalar/psicologia , Relações Profissional-Família , Pessoa de Meia-Idade , EspanhaRESUMO
AIMS: To investigate the level of adoption of evidence-based family engagement and support during end-of-life cancer care and subsequent bereavement and its contextual facilitators and barriers from health professionals' perspectives, and to explore differences between professional groups. DESIGN: Contextual analysis using an online cross-sectional survey. METHODS: This study was conducted in four Swiss hospitals and three home care oncology and palliative care services. Non-parametric testing was used to investigate the level of adoption and differences between nurses, physicians, occupational- and physiotherapists and psychosocial professionals (chaplains, onco-psychologists and social workers). The STROBE checklist for cross-sectional studies was followed. RESULTS: The majority of the 111 participating health professionals were nurses. Adoption was statistically significantly higher during end-of-life care than bereavement, with nurses and physicians reporting higher levels than the other professional groups. Guidance on end-of-life family care was available in about half of the cases, in contrast to a quarter for bereavement care. Self-perceived knowledge, skills and attitudes were moderate to high, with nurses and physicians reporting higher levels than others, except for general skills in working with families. Organisational structures were experienced as rather supportive, with the psychosocial group appraising the organisational context as significantly less conducive to fully implementing end-of-life and bereavement care than others, particularly during the end-of-life phase. CONCLUSION: Evidence-based family engagement and support were better adopted during end-of-life care than bereavement. Overall, nurses and physicians felt better enabled to care for families compared to other professional groups. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. PROTOCOL REGISTRATION: https://osf.io/j4kfh. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation and quality improvement efforts should focus particularly on the bereavement phase and be tailored to professional groups. IMPACT: The findings show that evidence-based family engagement and support practices during end-of-life were rather well adopted in contrast to subsequent bereavement care, with nurses and physicians better enabled than other professionals to provide care. A better understanding of health professionals' contributions and roles in family care is important to build interprofessional capacity for evidence-based end-of-life and bereavement support. REPORTING METHOD: The STROBE checklist for reports of cross-sectional studies was followed (von Elm et al., 2007).
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Luto , Neoplasias , Assistência Terminal , Humanos , Estudos Transversais , Assistência Terminal/psicologia , Feminino , Masculino , Adulto , Neoplasias/enfermagem , Neoplasias/psicologia , Neoplasias/terapia , Pessoa de Meia-Idade , Pessoal de Saúde/psicologia , Família/psicologia , Inquéritos e Questionários , Suíça , Atitude do Pessoal de Saúde , Prática Clínica Baseada em EvidênciasRESUMO
INTRODUCTION: The efforts of relatives in providing palliative care (PC) at home are important. Relatives take great responsibility, face many challenges and are at increased risk of poor physical and mental health. Support for these relatives is important, but they often do not receive the support they need. When PC is provided at home, the support for relatives before and after a patient's death must be improved. This study aimed to describe relatives' suggestions to improve the support from health professionals (HPs) before and after a patient's death in general PC at home. METHODS: This study had a qualitative descriptive design based on the data from open-ended questions in a survey collected from the Swedish Register of Palliative Care. The respondents were adult relatives involved in general PC at home across Sweden. The textual data were analysed using thematic analysis. RESULTS: The analysis identified four themes: (1) seeking increased access to HPs, (2) needing enhanced information, (3) desiring improved communication and (4) requesting individual support. CONCLUSIONS: It is important to understand and address how the support to relatives may be improved to reduce the unmet needs of relatives. The findings of this study offer some concrete suggestions for improvement on ways to support relatives. Further research should focus on tailored support interventions so that HPs can provide optimal support for relatives before and after a patient's death when PC is provided at home.
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Família , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Suécia , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Família/psicologia , Idoso , Sistema de Registros , Pessoal de Saúde/psicologia , Serviços de Assistência Domiciliar , Idoso de 80 Anos ou mais , Apoio Social , Inquéritos e Questionários , Relações Profissional-FamíliaRESUMO
INTRODUCTION: Family members experience considerable physiological, psychological, and emotional pressure when accompanying a critically ill relative in the emergency department. The culture and context of care influence the needs of the family, and a thorough understanding of these needs by health care professionals is essential to providing patient- and family-centered care. This study aimed to compare nurses' and family members' perceptions of the priorities of family member needs and their satisfaction with meeting those needs in the emergency department. METHODS: A comparative, cross-sectional descriptive study was conducted. Participants were 140 family members of patients receiving care and 122 nurses working in the emergency department in hospitals of Tabriz University of Medical Science, in Iran. The data were collected through Critical Care Family Needs Inventory-ED and analyzed with SPSS Statistics software. RESULTS: Family members rated their care needs as significantly greater than did nurses (129.45 [31.5] vs 124.45 [24.8], P = .003). Families rated their needs as having been met significantly less than the nurses estimated (103.6 [17.6] vs 110.8 [19.61], P < .05). DISCUSSION: The perceived importance of the patient's family's needs differed from the viewpoints of the patient's family members and the nurses. In addition, emergency nurses overestimated the extent to which family members' needs were met compared with family members. To more adequately gauge and meet the needs of family members, nurses need to acquire more knowledge about patient family needs in the emergency department.
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Serviço Hospitalar de Emergência , Enfermeiras e Enfermeiros , Humanos , Estudos Transversais , Família/psicologia , Satisfação PessoalRESUMO
Increasing numbers of individuals with complex, advanced illnesses are living longer and being cared for in the home by family members. As a result, family caregivers often experience physical, emotional, psychological, and social distress. A unique subset of this population are nurses who find themselves providing care in both their family lives and work lives, a phenomenon known as "double-duty caregiving." This study explored the experiences of nurses providing end-of-life care for family members while continuing to work as a nurse and the consequences of this experience. A qualitative design, using semistructured, in-depth interviews, was used to capture the double-duty caregivers' experiences. Four overarching themes were identified: It Takes a Village, Driving the Bus, Juggling Many Hats, and Moving Through and Looking Back. These themes captured the components of a support system that are essential for the double-duty caregiver to perform this work, the multifaceted expectations placed upon the double-duty caregiver, the double-duty caregiver's relentless need to balance multiple roles, and the immediate and long-term impact of double-duty caregiving. As nurses, we must acknowledge the need for self-care during this experience, and as a profession, we must provide support for the double-duty caregiver to preserve their personal and professional well-being.
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Cuidadores , Enfermeiras e Enfermeiros , Pesquisa Qualitativa , Assistência Terminal , Humanos , Cuidadores/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Assistência Terminal/psicologia , Assistência Terminal/métodos , Enfermeiras e Enfermeiros/psicologia , Enfermeiras e Enfermeiros/estatística & dados numéricos , Entrevistas como Assunto/métodos , Família/psicologiaRESUMO
OBJECTIVE: Healthcare professionals as well as families play a vital role in ensuring the quality of care for people living with dementia. However, the relationships between healthcare professionals and families of people living with dementia are not extensively examined, particularly within the Chinese cultural context of dementia. The goal of this study was to explore the views of healthcare professionals on their relationships with families of people living with dementia. DESIGN: This qualitative study was grounded in the interpretative phenomenological analysis framework. METHODS: Data were collected using focus-group interviews. Qualitative data were transcribed verbatim and analysed using interpretative phenomenological analysis. RESULTS: The study recruited a total of 26 healthcare professionals from 3 long-term care facilities. The study found that conflicts were inherent in the relationships between professionals and families of people living with dementia, and conflicts were found to manifest in three core domains: 1) Families demonstrated a lack of understanding about dementia, 2) Professionals faced challenges in managing families' unrealistic expectations regarding the disease status and the prognosis of people living with dementia, 3) Families did not perceive themselves as being responsible for the care of people living with dementia. CONCLUSIONS: The present study found that the prevailing factor underpinning the relational conflicts between healthcare professionals and families of people living with dementia, as reported by healthcare professionals was the perceived lack of understanding about dementia amongst families of those affected.
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Atitude do Pessoal de Saúde , Demência , Família , Grupos Focais , Pessoal de Saúde , Relações Profissional-Família , Pesquisa Qualitativa , Humanos , Demência/psicologia , Feminino , Masculino , Pessoal de Saúde/psicologia , Família/psicologia , Pessoa de Meia-Idade , Adulto , Cuidadores/psicologiaRESUMO
PURPOSE: Suboptimal communication with clinicians, fragmented care and failure to align with patients' preferences are determinants of post intensive care unit (ICU) burden in family members. Our aim was to evaluate the impact of a nurse facilitator on family psychological burden. METHODS: We carried out a randomised controlled trial in five ICUs in France comparing standard communication by ICU clinicians to additional communication and support by nurse facilitators. We included patients > 18 years, with expected ICU length of stay > 2 days, chronic life-limiting illness, and their family members. Facilitators were trained to help families to secure care in line with patient's goals, beginning in ICU and continuing for 3 months. Assessments were made at baseline and 1, 3 and 6 months post-randomisation. Primary outcome was the evolution of family symptoms of depression over 6 months using a linear mixed effects model on the depression subscale of the Hospital Anxiety and Depression Scale (HADS). Secondary outcomes included HADS-Anxiety, Impact of Event Scale-6, goal-concordant care and experience of serious illness (QUAL-E). RESULTS: 385 patients and family members were enrolled. Follow-up at 1-, 3- and 6-month was completed by 284 (74%), 264 (68.6%) and 260 (67.5%) family members respectively. The intervention was associated with significantly more formal meetings between the ICU team and the family (1 [1-3] vs 2 [1-4]; p < 0.001). There was no significant difference between the intervention and control groups in evolution of symptoms of depression over 6 months (p = 0.91), nor in symptoms of depression at 6 months [0.53 95% CI (- 0.48; 1.55)]. There were no significant differences in secondary outcomes. CONCLUSION: This study does not support the use of facilitators for family members of ICU patients.
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Comunicação , Estado Terminal , Família , Unidades de Terapia Intensiva , Relações Profissional-Família , Humanos , Masculino , Feminino , Estado Terminal/psicologia , Estado Terminal/terapia , Pessoa de Meia-Idade , Família/psicologia , Unidades de Terapia Intensiva/organização & administração , Idoso , França , Adulto , Depressão/psicologiaRESUMO
PURPOSE: Many children and adolescents support relatives with cancer. However, literature about young carers (YCs) shows a lack of awareness among professionals, especially in oncology. This quantitative study aims to explore the level of knowledge and perceptions of healthcare professionals working with cancer patients about the situations and characteristics of YCs. METHODS: 395 professionals participated in an online survey. Professionals reported sociodemographic and professional information and answered several questions evaluating their perceptions about YCs, such as the types of support provided and the consequences of being a YC. Descriptive analysis and group comparisons (Chi-square, Mann-Whitney U, and Kruskal-Wallis tests) by sex, occupation, and patients treated (adult and/or pediatric) are performed on the data collected. RESULTS: Overall, per the literature on YCs, professionals provide an adequate description of what a YC can be, even though one in two professionals have never heard the term. Several differences are observed: Men mention fewer types of support that YCs can provide, while women report more negative consequences of being a YC; psychologists and social workers report fewer positive impacts for these young people than the other professionals; professionals who work with pediatric patients mention fewer negative consequences than those who work with adults. CONCLUSION: Oncology healthcare professionals have sufficient awareness of YCs; however, several professionals struggle to fully understand the situation of YCs. These findings underline the need for awareness programs in oncology to improve health professionals' understanding of YCs and enhance their identification and support.
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Cuidadores , Neoplasias , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem , Atitude do Pessoal de Saúde , Cuidadores/psicologia , Família/psicologia , França , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/psicologia , Neoplasias/psicologia , Apoio Social , Inquéritos e QuestionáriosRESUMO
AIMS: Guidelines support family-witnessed resuscitation (FWR) during cardiopulmonary resuscitation in hospital if deemed to be safe, yet barriers amongst healthcare professionals (HCPs) still exist. This study aimed to evaluate the effects of an educational online video intervention on nurses' and physicians' attitudes towards in-hospital FWR and their self-confidence in managing such situations. METHODS AND RESULTS: A pre- and post-test quasi-experimental study was conducted October 2022 to March 2023 at six Swedish hospitals involving the departments of emergency care, medicine, and surgery. The 10â min educational video intervention was based on previous research covering the prevalence and outcome of FWR, attitudes of HCP, patient and family experiences, and practical and ethical guidelines about FWR.In total, 193 accepted participation, whereof 91 answered the post-test survey (47.2%) with complete data available for 78 and 61 participants for self-confidence and attitudes, respectively. The self-confidence total mean scores increased from 3.83 to 4.02 (P < 0.001) as did the total mean scores for attitudes towards FWR (3.38 to 3.62, P < 0.001). The majority (71.0%) had positive views of FWR at baseline and had experiences of in-hospital FWR (58.0%). Self-confidence was highest amongst participants for the delivery of chest compressions (91.2%), defibrillation (88.6%), and drug administration (83.3%) during FWR. Self-confidence was lowest (58.1%) for encouraging and attending to the family during resuscitation. CONCLUSION: This study suggests that a short online educational video can be an effective way to improve HCP's self-confidence and attitudes towards the inclusion of family members during resuscitation and can support HCP in making informed decisions about FWR.