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BACKGROUND: An aging population has contributed to an increasing prevalence of functional limitations among older adults. Family support plays a crucial role in toileting and bathing assistance. Yet, the relationship between availability of family care resources and such actual assistance remains insufficiently explored. Our study aims to describe availability of family care resources and identify the association between availability of family care resources and toileting assistance or bathing assistance. METHODS: This study employed a cross-sectional analysis of data from the 2018 National Survey of the China Health and Retirement Longitudinal Study (CHARLS). The availability of family care resources was assessed using measurements of spouse availability, adult child availability, and living arrangement. Bathing assistance and toileting assistance were measured based on self-reported receipt of such assistance. Descriptive statistics were used to depict the overall and subgroup situation of availability of family care resources. Multivariable logistic models were employed to investigate the relationship between availability of family care resources and the receipt of toileting assistance or bathing assistance. RESULTS: Among the sample of older adults with functional limitations, 69% had a spouse, 63% had at least one adult child, and 80% resided with family members. Among those with bathing disability, 13% reported lacking bathing assistance, and among those with toileting disability, 54% reported lacking toileting assistance. Participants with 1-2 adult children had lower odds of receiving toileting assistance (OR: 0.28, 95% CI: 0.09, 0.91, p= 0.034) compared to those with three or more adult children. Spouse availability and living arrangement did not exhibit statistically significant associations with toileting assistance. Participants without a spouse had lower odds of receiving bathing assistance (OR: 0.27, 95% CI: 0.09-0.78, p= 0.016) in comparison to those with a spouse; however, adult child availability and living arrangement did not display statistically significant associations with bathing assistance. CONCLUSION: The present findings suggest a gap in family commitment when it comes to assisting older adults with functional limitations in bathing/toileting. To address this, policymakers are encouraged to prioritize the implementation of proactive mechanisms for identifying family caregivers, alongside incentives to enhance their engagement in practical caregiving activities. Furthermore, it is crucial to emphasize the prioritization of affordable and easily accessible formal toileting/bathing assistance options for older adults who lack sufficient family care resources.
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Actividades Cotidianas , Humanos , Anciano , Masculino , China/epidemiología , Femenino , Estudios Transversales , Anciano de 80 o más Años , Persona de Mediana Edad , Estudios Longitudinales , Cuidadores , Baños/métodos , FamiliaRESUMEN
AIM: To synthesize current evidence about the impact visiting restrictions in adult intensive care units have on family members during the COVID-19 pandemic. DESIGN: Integrative literature review. METHODS: A total of 104 articles were retrieved. Screening yielded a total of 23 articles which were appraised for quality. Reflexive thematic analysis was applied to synthesize findings and extract themes. DATA SOURCES: CINAHL Plus, Ovid MEDLINE, PubMed and ProQuest databases were searched for articles between January 2020 and November 2022. RESULTS: The findings were grouped into two main themes with six subthemes. Theme 1: not being present at the bedside, and Theme 2: altered communication added to family members' distress. Findings indicate that visiting restrictions imposed during the COVID-19 pandemic had negative consequences for family members. CONCLUSION: The patient and their family are inherently connected, prioritizing family presence with the return of flexible, open visitation policies in ICU must be a priority to mitigate further harm and adverse outcomes for all. REPORTING METHOD: The review complies with the PRISMA guidelines for reporting systematic reviews. IMPLICATIONS FOR PROFESSION: Nursing leaders must be included in the development of future pandemic policies that advocate family-centred care. NO PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution was included in this review.
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COVID-19 , Pandemias , Adulto , Humanos , Visitas a Pacientes , COVID-19/epidemiología , Unidades de Cuidados Intensivos , FamiliaRESUMEN
AIM: To explore the perceptions and experiences of midwives caring for couples who experience a stillbirth. DESIGN: Qualitative study based on Gadamer's hermeneutic phenomenology. METHODS: This study was conducted with midwives (n = 18) at the birth unit of a third-level public hospital in Jaén (Spain) in 2023. Personal semi-structured interviews were recorded in audio for later transcription by two researchers following steps described by Fleming. RESULTS: Two themes were identified as important aspects of the practise of midwives in a situation of the birth of a stillborn child: (1) the importance of each action of the midwife, and (2) the availability of resources determines the care provided. CONCLUSIONS: Having a stillbirth is a very complex experience, in which the psychological support and human and material resources involved are the basic tool for the care of these families. Acknowledging limitations of the available resources, the assistance and care provided by midwives are in line with the clinical practice guidelines, which can have an emotional impact on them. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The care to be provided in stillbirth requires appropriate human and material resources for these families. Midwifery and nursing professionals are in a unique position for acting in cases of families with a stillbirth, updated protocols and, in general, the coordination of the different agents involved within the healthcare system. WHAT PROBLEM DID THE STUDY ADDRESS?: The midwives´ experiences in cases which end with the delivery of a stillborn. WHAT WERE THE MAIN FINDINGS?: Each action of the midwife is as important as the availability of resources to offer the most appropriate care. WHERE AND ON WHOM WILL THE RESEARCH HAVE AN IMPACT?: In each woman who receives the care of a midwife who attends the birth of a stillborn. REPORTING METHOD: COREQ checklist. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution occurred for this study as this research focused on exploring staffs' perspectives from the specific viewpoint of their personal experience.
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AIM: To explore adolescents' experiences of having a parent with heart disease. DESIGN: This qualitative study was performed with semi-structured individual interviews. METHODS: Interviews were conducted with 33 adolescents between 13 and 19 years old, who either had a mother or father with one of these diagnoses: ischemic heart disease, arrhythmia, heart failure, cardiac arrest or heart valve disease. The parent had been ill for at least 6 months and up to 5 years. The study was carried out in Denmark, Norway and Sweden between 2019 and 2022. The analysis was inspired by Reflexive Methodology. RESULTS: Three central themes emerged: Response to parental heart disease; Growing up ahead of time; and Strategies in a changed life situation. For the adolescents, heart disease was experienced as an acute and lethal disease that put their parents' lives in danger. New routines and roles not only changed everyday life within the family but they also enhanced maturity and appreciation of life. To maintain a balance in life, the adolescents pursued normality and sought a safe space to have a normal youthful life. CONCLUSION: In a period known to be significant for development, life with parental heart disease appeared as a biographical disruption because adolescents renegotiated their identity to manage their new life situation. IMPACT: It is important to help younger family members adapt to parental heart disease by informing them about possible reactions and supporting them in how to adapt to their new life by seeking breaks and normality. PATIENT OR PUBLIC CONTRIBUTION: No patient or public involvement.
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AIM: This study aims to (1) introduce the emergent concept of the retrograde plunge experienced by people living with Alzheimer's disease and (2) illustrate how nurses can accompany those experiencing this phenomenon, as well as their family and formal carers, using the seven-phase inquiry process proposed by Smith and Liehr. DESIGN: Discursive paper. METHODS: After describing the phenomenon and the Story Theory, the 7-phase Inquiry Process presents the fictional story of Mrs. Lurie, a nursing home resident. RESULTS: Story theory allows nurses to accompany Mrs. Lurie. The emergent concept of retrograde plunge is explained. Different tools such as genograms, story paths and eco-maps are presented. This discussion demonstrates how some perspectives can contribute to a better description of the retrograde plunge phenomenon. The narrative care approach can help give voices to people experiencing retrograde phenomena. The adoption of a perspective that considers embodied language could help to better understand the needs of a person. CONCLUSION: There is a lack of consistency and uniformity regarding the understanding of the retrograde phenomenon. This impacts the quality of care for people and the scientific knowledge, research and education of healthcare professionals. This issue should be addressed in future studies. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: This article shows how story theory helps nurses accompany those facing a retrograde plunge phenomenon, helps them tell their own stories and finds a way to resolve the situation. IMPACT: This article paves the way for further developments that must now be realized by the international community of experts involved in the care of people with Alzheimer's disease, from practical, academic and research perspectives. NO PATIENT OR PUBLIC CONTRIBUTION: No patient or public was involved in the design or drafting of the discursive paper. WHAT PROBLEM DID THE STUDY ADDRESS?: The retrograde plunge is a phenomenon in which people living with Alzheimer's disease return to their past lives and re-experience with certain events. The retrograde plunge is a well-known concept that is poorly described in scientific literature and is sometimes misunderstood by families and professional caregivers. This discursive article explains the retrograde plunge phenomenon experienced by people living with Alzheimer's disease. WHAT WERE THE MAIN FINDINGS?: This article demonstrates how story theory helps nurses and families support people with retrograde plunges. This highlights the lack of consistency and uniformity in this phenomenon, which has implications for the quality of care, education and research. Story theory and the seven-phase inquiry process proposed by Smith and Liehr (in Middle-range theory for nursing, Springer Publishing Company, 2023) help to better understand and explain the retrograde plunge phenomenon. WHERE AND ON WHOM WILL THE RESEARCH HAVE AN IMPACT?: This article advances nurses' knowledge in the different fields of practice, teaching and research. This article proposes links among the retrograde plunge phenomenon, embodied language and narrative care approach; this could offer further ways to develop nursing knowledge. This study has the potential to advance the knowledge of practice and education and offers new opportunities for research. TRIAL AND PROTOCOL REGISTRATION: There was no trial or protocol registration as this article is a discussion.
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Enfermedad de Alzheimer , Humanos , Enfermedad de Alzheimer/psicología , Enfermedad de Alzheimer/enfermería , Cuidadores/psicología , Narración , Relaciones Enfermero-PacienteRESUMEN
AIM: To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT). DESIGN: An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes. METHODS: Data were retrospectively collected. Thematic analysis was conducted guided by the NPT framework. This framework emphasizes that successful implementation of an intervention relies on its 'normalization', consisting of four constructs: coherence, cognitive participation, collective action and reflexive monitoring. RESULTS: Coherence (sense making): Nurses felt the intervention could contribute to their competence in assessing family caregivers' needs, but some were unsure how it differed from usual practice. Cognitive participation (relational work): Nurse champions played a crucial role in building a community of practice. However, sustaining this community was challenging due to staff turnover and shortages. Collective action (work done to enable the intervention): Nurses felt the Carer Support Needs Assessment Tool training enabled them to improve their support of family caregivers. However, contextual factors complicated implementation, such as being used to a patient rather than a family-focused approach and a high workload. Reflexive monitoring (appraisal of the intervention): Positive experiences of the nurses with the intervention motivated them to implement it. However, the research context made nurses hesitant to recruit family caregivers because of the potential burden of participation. CONCLUSION: Although the intervention demonstrated potential to assist nurses in providing tailored support to family caregivers, its integration into daily practice was not optimal. Contextual factors, such as a patient-focused approach to care and the research context, hampered normalization of the intervention. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Assessing and considering contextual factors that may influence implementation of a complex care intervention is needed. The NPT provided a valuable framework for evaluating the implementation process in our study. IMPACT: What problem did the study address? This evaluation study analysed the factors that promoted or hindered the implementation of a nursing intervention to support family caregivers in end-of-life care. What were the main findings? Both the intervention and the intervention training have potential and value for nurses in providing tailored support to family caregivers. However, the implementation faced challenges due to organizational factors and the research context, including recruitment. Where and on whom will the research have an impact? This insight is valuable for all stakeholders involved in implementing complex nursing interventions, including researchers, nurses and funders. REPORTING METHOD: This study has adhered to the relevant EQUATOR guidelines: Standards for Reporting Qualitative Research (SRQR). PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public involved. TRIAL REGISTRATION: The trial was prospectively registered on the Dutch Trial Register (NL7702).
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AIMS: To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents. DESIGN: A qualitative interview study using reflexive thematic analysis. METHODS: We conducted individual interviews and focus groups with 14 paediatric brain tumour survivors aged 9-52 years and 16 parents, which were audiorecorded and transcribed. We inductively analyzed the data using Braun and Clarke's reflexive thematic analysis. Inductively derived themes were then mapped onto the components of the International Classification of Functioning, Disability and Health framework to examine the survivors' everyday functioning. RESULTS: All survivors experienced ongoing long-term and late effects but with considerable variations in how these restricted the survivors' functioning and thus their ability to participate in everyday life activities (e.g. social, educational and work activities). All survivors expressed an explicit focus on and use of different strategies to manage their perceived functional limitations and participation restrictions. Many survivors expressed discrepancies between their own goals, expectations and actual abilities post-cancer; making them very aware of their limitations. In addition, many survivors and parents experienced ongoing concerns about the survivors' future, including the risk of late effects, relapse or other complications. CONCLUSION: A wide range of long-term and late effects continue to affect the survivors and their parents' functioning and everyday lives. Their ongoing needs emphasize the importance of comprehensive, life-long follow-up care, as recommended. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The complex challenges across the biopsychosocial realms faced by the survivors supports the call for multidisciplinary survivorship care. Nurses are well positioned to lead such care, as they are trained to provide holistic care and thereby support survivors' functioning and activity participation in everyday life. REPORTING METHOD: We used the COREQ guidelines when reporting the study. PATIENT OR PUBLIC CONTRIBUTION: Two user representatives (one young adult PBT survivor and one mother of a PBT survivor) ensured the relevance and quality of the semi-structured interview guides prior to the interviews with the survivors and parents. The guides were sent to the user representatives by mail, and they provided their written feedback by mail to the first author.
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Neoplasias Encefálicas , Calidad de Vida , Niño , Adulto Joven , Humanos , Calidad de Vida/psicología , Sobrevivientes/psicología , Padres/psicología , Investigación CualitativaRESUMEN
AIMS: To describe the changes in moderate-to-late preterm infants' (MLPIs) growth during 12 months of corrected age (CA) and to examine the predictive role of NICU-related stress, postpartum depression trajectory and family coping ability on the physical developmental trajectory of MLPIs. DESIGN: A prospective longitudinal study. METHODS: There were 237 mother-infant dyads with at least two follow-up data records included. General characteristics and NICU-related stress were recorded from medical records at baseline. Infants' physical growth was measured at 40 weeks, 1, 3, 6, 9 and 12 months CA during outpatient follow-up. Maternal postpartum depressive symptoms and family coping ability were assessed by questionnaires at 1, 3, 6, 9 and 12 months CA and 1 month CA respectively. We investigated the modifiable factors inside and outside of NICU on the trajectories of physical growth in the first year in MLPIs, mainly by using latent growth curve models with time-varying covariates. RESULTS: The curved trajectories of weight, length and head circumference in the first year in MLPIs demonstrated gradually slowed growth rates and these infants were above the WHO growth standards for the same age and sex. The latent growth curve models indicated that more NICU-related stress was negatively associated with the weight and length at 40 weeks CA, and family coping ability (parent-child relationship) at 1 month CA was associated with the growth rate of weight. Besides, more NICU-related stress predicted faster length growth rate. The infants of mothers who were in the group of high-level postpartum depression trajectory had a slower growth rate of head circumference. CONCLUSIONS: Our study identified the modifiable factors along the care continuum influencing the trajectory of MLPIs' physical growth. Nurses should receive more training about infant stress measurement and family-centred care to work in partnership with parents so that MLPIs can reach their full developmental potential. Also, multidisciplinary interventions including stress reduction strategies, close psychological monitoring and education improving parent-infant relationships should be further developed to achieve optimizing growth in the first year of MLPIs. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: It is recommended that nurses pay attention to the long-term physical growth status of MLPIs, and closely support their families. Quantifying NICU-related stress and developing reduction strategies should be the priority for clinical staff during hospitalization. After discharge, persistent screening of depressive symptoms, psychological intervention and education about the parent-child relationship need to be included in the follow-up visits. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. The study only included patients who were research participants.
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Adaptación Psicológica , Depresión Posparto , Recien Nacido Prematuro , Unidades de Cuidado Intensivo Neonatal , Estrés Psicológico , Humanos , Femenino , Depresión Posparto/psicología , Estudios Longitudinales , Recién Nacido , Recien Nacido Prematuro/crecimiento & desarrollo , Recien Nacido Prematuro/psicología , Adulto , Masculino , Estudios Prospectivos , Estrés Psicológico/psicología , Lactante , Desarrollo Infantil/fisiología , Madres/psicología , Relaciones Madre-Hijo/psicologíaRESUMEN
AIM(S): To identify and summarize evidence on paediatric patient safety in a hospital setting from parents' point of view. DESIGN: A mixed-methods systematic review. PROSPERO ID: ID number CRD42023453626. DATA SOURCES: PubMed, Scopus, ScienceDirect, the Cochrane Library and the Wiley database were searched in July 2023. REVIEW METHODS: Two researchers independently applied eligibility criteria, selected studies and conducted a quality appraisal. Data-based convergent synthesis and thematic content analysis were employed. RESULTS: Twelve studies were included: eight qualitative research studies, two cross-sectional studies, one non-randomized experimental study and one mixed-methods study. The results were grouped into two themes-parental perceptions of inclusion in paediatric patient safety and parental perceptions of exclusion from paediatric patient safety-and comprised seven main subthemes: comfort in communication, parental engagement, communication difficulties, withdrawal from activity, uncertainty about available information and threats to patient safety. CONCLUSIONS: Parents are willing to be engaged in care but require support from healthcare professionals, as they are often anxious about the condition of their children and actions they believe might be helpful. They need to be treated as valuable partners and be engaged in communication and decision processes. IMPACT: The development and implementation of interventions involving parents in ensuring the safety of hospitalized paediatric patients should be of the utmost priority to healthcare organizations, as the common theme throughout the included studies was the need for improved communication with and recognition of parents as allies. REPORTING METHOD: The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) checklist was followed. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.
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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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Aflicción , Neoplasias , Cuidado Terminal , Humanos , Estudios Transversales , Cuidado Terminal/psicología , Femenino , Masculino , Adulto , Neoplasias/enfermería , Neoplasias/psicología , Neoplasias/terapia , Persona de Mediana Edad , Personal de Salud/psicología , Familia/psicología , Encuestas y Cuestionarios , Suiza , Actitud del Personal de Salud , Práctica Clínica Basada en la EvidenciaRESUMEN
Ending familial co-residence, termed 'moving on' by participants, is an increasingly relevant life transition for people with a learning disability due to increasing life expectancy and policy developments. Nevertheless, there is an absence of research exploring this transition experience in a United Kingdom (UK) context. This constructivist grounded theory study therefore aimed to explore, conceptualise, and theorise the 'moving on' experiences of adults with a learning disability and their families. This article reports the experiences of five adults with a learning disability and nine family members in England, UK. Narrative interviews and creative storybook methods were used to collect data between April 2015 and May 2016. Constant comparative methods, theoretical sampling, and memo writing were used throughout data collection and analysis. Participants with a learning disability presented personal growth and greater life fulfilment over the course of the transition; they flourished. In parallel, family members relinquished their care responsibilities. Importantly, the iterative and reciprocal relationship between flourishing and relinquishing shows that ongoing family member involvement is crucial during and following relocation. Family members identified factors that potentially inhibit relinquishing: pressure to 'let go', different perceptions of independence between family members and service providers, inadequate future investment, and rapport with professional carers. These novel insights led to the generation of the first known mid-range theory concerning this transition, entitled 'Moving on: flourishing and relinquishing'. Findings will guide future research in this field and facilitate the design of appropriate support for people with a learning disability and their families.
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BACKGROUND: For families with children diagnosed with complex illnesses, the COVID-19 pandemic added many challenges. In order to mitigate inevitable disruptions in pediatric care settings, caregivers may need added supports and resources. The Keeping Hope Possible (KHP) Toolkit is a self-administered intervention intended to enhance caregiving experiences of parents with a child with multiple needs. However, little is known about effectively disseminating the Toolkit. PURPOSE AND METHODS: A qualitative, thematic analysis was conducted to explore the opinions and perceptions of pediatric nurses and allied healthcare providers (HCPs) in relation to the dissemination and use of the KHP Toolkit for use by families with complex medical needs. Structured interview data were analyzed from a sample of seven pediatric HCPs working in various care settings in one Canadian province. FINDINGS: Five themes were developed including: Recognising Importance of the KHP Toolkit; Needing Support and Direction; Implementation and Use of the KHP Toolkit; Realizing Important Considerations for Success; and, Emphasizing Connection through Isolated Times. DISCUSSION: Participants recognized the importance of the KHP Toolkit for parents and extended family in a variety of settings to encourage self-care, daily structure, and connectedness. Thus, pediatric nurses' awareness and openness to the initial dissemination of the Toolkit is essential, and a subsequent interprofessional team approach will ensure consistent reminders and support for families. APPLICATION TO PRACTICE: Careful assessment of family readiness for learning about and using the KHP Toolkit is essential, along with an interprofessional approach to consistent inquiry and support at each family encounter.
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COVID-19 , Enfermeras Pediátricas , Padres , Investigación Cualitativa , Humanos , COVID-19/enfermería , COVID-19/epidemiología , Padres/psicología , Niño , Masculino , Femenino , Enfermeras Pediátricas/psicología , Canadá , Técnicos Medios en Salud , Pandemias , SARS-CoV-2 , Actitud del Personal de Salud , Adulto , Enfermería PediátricaRESUMEN
AIM: This study aimed to examine the extent, range and variety of research in Europe describing healthcare interventions for older people with dementia (PwD) and family caregivers. METHODS: This was a scoping review and followed the PRISMA Scoping Review guideline. MEDLINE, CINAHL and Cochrane library databases were searched for studies published between 2010 and 2020. Studies reporting healthcare interventions in Europe for PwD over 65 years and their family caregivers were included. RESULTS: Twenty-one studies from six European countries were included. The types of healthcare intervention identified were categorized as follows: (1) family unit intervention (interventions for both PwD and their family caregiver), (2) individual intervention (separate interventions for PwD or family caregivers) and (3) family caregiver only intervention (interventions for family caregivers only but with outcomes for both PwD and family caregivers). CONCLUSIONS: This review provides insight into healthcare interventions for older PwD and family caregivers in Europe. More studies are needed that focus on the family as a unit of care in dementia.
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Cuidadores , Demencia , Humanos , Anciano , Demencia/terapia , Instituciones de Salud , Europa (Continente) , Atención a la SaludRESUMEN
During home isolation due to the coronavirus disease, family caregivers assumed the responsibility of caring for infected family members; however, the full extent of the difficulties and challenges they encountered remains unclear. This study applied a descriptive phenomenology approach, using semi-structured, one-on-one, in-depth interviews to explore the experiences of 16 primary family caregivers during home isolation amid the coronavirus disease. The key themes identified were as follows: (1) protecting family, comprising anxiety over preventing infection and bearing the responsibility of caregiving and a concern about the diagnosis; (2) seeking stability, encompassing the impact of epidemic control policies on daily routines, strategies to overcome obstacles caused by quarantine measures, and gathering resources and receiving support; and (3) reflections on life, including favoring love over discrimination, rediscovering oneself, cherishing family, and acknowledging personal growth and dedication. This study highlights that family members who took on caregiving roles due to obstacles or health risks faced significant pressure to protect their family members during isolation and actively sought professional consultation and acquired caregiving skills to enhance their confidence and adaptability.
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COVID-19 , Cuidadores , Humanos , Aislamiento de Pacientes , Familia , AnsiedadRESUMEN
There is increasing evidence that highlights the benefits of Family-oriented Therapeutic Conversations (FAM-TC) for the patient and the family; however, studies show variability regarding the content and the way these interventions are offered. This may hamper its further development in clinical practice. This review systematically maps the available literature on nurse-led FAM-TC and offers a solid synthesis of the characteristic, effectiveness, and feasibility of these interventions. A systematic search in PubMed, CINAHL, Cochrane, Web of Science, PsycINFO, Trip (Turning Research Into Practice), BASE (Bielefeld Academic Search Engine), OATD (Open Access Theses and Dissertations), and ProQuest databases identified 37 studies. The interventions varied in interventionist nurses' profile, the intervention content, or the duration of the sessions offered. Most of the interventions showed beneficial effects on perceived family support and family functioning. This review offers suggestions for future studies, such as the inclusion of specific theoretical frameworks for intervention design, targeting both the patient and the family and offered by nurses with family nursing competency.
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Enfermería de la Familia , Humanos , Femenino , Masculino , Adulto , Comunicación , Relaciones Profesional-Familia , Persona de Mediana Edad , Familia/psicología , Anciano , Anciano de 80 o más AñosRESUMEN
INTRODUCTION: Australian organ and tissue donation rates are low compared to other countries. Acknowledging that donation practices vary across Australia, the Australian College of Critical Care Nurses supported the development of a position statement to explicate critical care nurses' role in supporting organ and tissue donation. Several Australian peak professional organisations provide guidance to inform and support organ and tissue donation. AIM: The aim of this study was to develop a position statement using contemporary Australian research evidence to build upon and complement existing guidance, focussing on the role of critical care nurses in organ and tissue donation in Australian critical care. METHOD: An approach similar to a rapid review was used, providing a streamlined approach to synthesising evidence. A comprehensive search using Medical Subject Headings, keywords, and synonyms was undertaken using Medline and CINAHL Complete via EBSCOhost to identify peer-reviewed Australian research evidence about critical care nurses' role, obligations, expectations, and scope of practice during organ and tissue donation. Narrative synthesis was used to synthesise the research evidence. FINDINGS: The importance of separating death from organ donation in discussions with family, the timing and the approach to organ donation conversations, and working in collaboration with the DonateLife Donation Specialist Nurses were identified. The importance of understanding family perspectives, caring for families, and collegial support for critical care clinicians were also identified. With the guidance of peak professional organisations, the research evidence was then used to develop practice recommendations for critical care units, leaders, and critical care nurses. DISCUSSION AND CONCLUSION: The recommendations explicate the important contribution critical care nurses can make to ensuring timely, sensitive communication, providing high-quality end-of-life care, supporting families irrespective of the donation decision and supporting colleagues from the wider critical care team, thereby optimising the processes related to organ and tissue donation in Australian critical care settings.
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Understanding the impact of caregiving responsibilities on women in medicine is crucial for ensuring a healthy and intact workforce, as caregiving responsibilities have the potential to affect the careers of women in health care along the entire pipeline, from students and trainees to physicians, physician-scientists, and biomedical researchers.
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Medicina , Médicos , Femenino , Humanos , Fatiga , Estado de Salud , InvestigadoresRESUMEN
BACKGROUND: Caregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers. OBJECTIVE: This study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers. METHODS: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants. RESULTS: In response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators. CONCLUSIONS: There are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage.
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Cuidadores , Grupos de Autoayuda , Adulto , Humanos , Femenino , Cuidadores/psicología , Apoyo Social , Servicios de Salud , Comunicación , Familia/psicologíaRESUMEN
OBJECTIVES: The likelihood of providing care to a spouse in middle and older ages has increased as life expectancy increases, but knowledge about how the caregiver and care recipient influence each other's mental health is limited. This study examined whether a partner's physical, cognitive, and mental health in a spousal caregiving dyad are associated with the other partner's depressive symptoms in China and whether the dyadic effects vary by gender. METHODS: This study used data from Wave 3 (2015) and Wave 4 (2018) follow-up surveys of the China Health and Retirement Longitudinal Study (CHARLS). The analytic sample featured 1,245 dyads of care recipients aged 45 or older and their spouse caregivers. The Actor-Partner Interdependence Model was used to test the dyadic effects among all couples in the analytic sample, couples with wife caregivers and couples with husband caregivers, respectively. RESULTS: We found that caregiver's depressive symptoms at Wave 3 were significantly associated with care recipient's depressive symptoms at Wave 4 in the full sample. Regardless of caregiver or care recipient roles, wives' mental health was impacted by their husbands' depressive symptoms, but not vice versa. Wife recipient's cognitive impairment was associated with husband caregiver's lower depressive symptoms. CONCLUSION: This study sheds light on the mental health of couples in the context of caregiving in China. The findings indicate that interventions to support couples in a caregiving dyad need to consider the influence they have on each other, and the gender and health conditions of each in the dyad.
RESUMEN
AIM: To explore how public health nurses in child and family health centres experience detecting and preventing child maltreatment. DESIGN: Qualitative study. METHODS: Fourteen semi-structured individual interviews with public health nurses who worked in 11 different child and family health centres were conducted. The interviews were analysed using thematic analysis. RESULTS: Three themes were identified: (i) integrating knowledge to prevent child maltreatment as part of their everyday job, (ii) striving hard to detect child maltreatment and (iii) experiencing the assignment to be complex and demanding. CONCLUSION: Despite extensive experience, knowledge and following the guidelines, public health nurses in this study had difficulties finding children exposed to child maltreatment in child and family health centres. Public health nurses called for mutual multidisciplinary cooperation with other services and organizational facilitation, such as enough time and clear guidelines to effectively address this issue. IMPLICATIONS FOR PRACTICE: This study provides knowledge about how public health nurses work with child maltreatment at the Child and Family Health Center, which can serve as valuable foundation for further research as well for collaborating services. REPORTING METHOD: EQUATOR guidelines were followed, using the COREQ checklist. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.