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The FICUS trial is a cluster-randomized superiority trial to determine the effectiveness of a nurse-led, interprofessional family support intervention (FSI) on the quality of care, family management and individual mental health of family members of critically ill patients, compared to usual care. This paper describes the statistical analysis plan of the FICUS trial. The primary outcome is quality of family care, assessed by the Family Satisfaction in ICU Questionnaire (FS-ICU-24R) at patient discharge from the ICU. Several secondary outcomes are additionally assessed 3, 6, and 12 months thereafter. Sixteen clusters (ICUs) were randomly assigned 1:1 to FSI or usual care using minimization (8 per treatment). The target sample size is 56 patients per cluster (896 in total). Recruitment has been completed in January 2024. The follow-up of the last participant will be completed in early 2025. The primary and secondary outcomes will be analyzed by linear mixed-effects models (LMM). The main model for the primary outcome will include a random intercept per cluster with treatment (FSI vs. usual care) as the only explanatory variable due to the relatively small number of clusters. In addition, covariate-adjusted analyses will be conducted, including two cluster-level characteristics used in the minimization as well as participant-level characteristics. Moreover, a number of subgroup analyses by cluster- and participant-level characteristics are pre-specified.Trial registration ClinicalTrials.gov NCT05280691 . Registered on February 20, 2022.

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BACKGROUND: Behavioral health conditions among children have worsened over the past decade. Caregivers for children with behavioral health conditions are at risk for two types of caregiver strain: (1) an objective strain, that results directly from the child's condition and (2) subjective strain, that arises from the caregiver's feelings regarding these events. OBJECTIVE: This study aimed to evaluate the impact of a technology-enabled pediatric and family behavioral health service on caregivers' strain among a commercially insured population. We also explore the common symptom clusters of caregiver strain to better understand the caregiver presentation to inform future care planning. METHODS: We examined changes in caregiver strain using the Caregiver Strain Questionnaire-Short Form 7 over the course of their child's web-based behavioral health care between 2021 and 2023 using a pre-post study design. Common caregiver strain symptom clusters were identified using Ward hierarchical agglomerative clustering. RESULTS: The majority of children were White 60.8% (1002/1647), female 53.6% (882/1647), and aged between 5 and 9 years (33.7%, 555/1647). Families fall broadly into 4 groups based on what drives caregiver strain the most, namely those experiencing (1) disrupted family relationships and time interruption, (2) missed work, (3) worried about their child's future and feeling tired and sad, and (4) financial strain. Caregiver strain, which was associated with the child's disease severity (P<.001), decreased significantly in all therapeutic groups. CONCLUSIONS: Web-based family-oriented behavioral health care can improve caregiver strain and reduce family and time disruptions, missed work, and financial strain. Sources of caregiver strain vary and may be overlooked when relying on the conventional scoring of the Caregiver Strain Questionnaire-Short Form 7.

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Tracheostomy ventilation (TV) can increase survival time for people living with motor neurone disease (MND); however, the use of TV varies between countries. Concerns regarding anticipated quality of life (QoL) are among the reasons given by healthcare professionals for not recommending this intervention, yet little is known about QoL in this context. This scoping review was conducted to examine the evidence on QoL for those with MND who use TV and family members involved in their care. Using the methodological guidance of the Joanna Briggs Institute, 23 papers were identified for inclusion, and findings were inductively analysed to identify key themes. We found that people living with MND tend to rate QoL post TV more positively than anticipated by healthcare professionals or family members. QoL was found to be related to positive relationships and activities the person could maintain. Feeling able to make a choice and an adequate level of financial resources were also important factors. Family members tended to experience lower QoL, associated with the uncertainty surrounding an emergency procedure and the complexity of subsequently required care. More evidence on QoL from the perspectives of people with MND who use TV is needed to support decision making and inform guidance.

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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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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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Family-centered values are important for caregiving. However, findings on their association with burden are inconsistent. We aim to analyze whether positive aspects of caregiving are mediating the effect of familism on burden among informal caregivers of older adults in Germany. Participants (n = 277) were drawn from the Attitudes Toward Informal Caregivers (ATTIC) project and include informal long-term caregivers of older relatives (aged ≥ 60) quota-sampled from Germany (December 2023). Mediation analyses (linear OLS regression) with robust standard errors were conducted with the classic and the counterfactual causal mediation framework. The classic approach indicated a significant positive direct effect of familism on burden, a significant negative direct effect of PAC on burden and a significant negative indirect effect of familism via PAC on burden; the total effect was not significant. The causal mediation approach supports this; the interaction between familism and PAC was not significant. Thus, sociocultural family-centered values seemed to worsen burden but also to reduce it through positive experiences of caregiving, which did not depend on the strength of familism values. The findings advance our understanding of the mechanisms underlying the stress appraisal of the informal care situation and emphasize the role of positive experiences of care.

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The experience of bearing witness to the lack of appetite and involuntary weight loss that characterizes cancer anorexia-cachexia syndrome (CACS) is reported to be stressful for family members. Research identifies that family members engage in a wide range of behaviors in response to a relative who shows minimal interest in eating and is literally 'wasting away' before their eyes. Some families, though concerned about the symptoms of CACS, do not dwell excessively on the patient's nutritional intake while others continually harass the patient to eat and petition health care providers for aggressive nutritional interventions to eat in an attempt to stave off further physical deterioration. While studies have detailed how family members respond to a terminally ill relative with CACS, empirical work explicating the explanatory models of CACS that they hold is lacking. Explanatory models (EMs) reflect the beliefs and ideas that families have about why illness and symptoms occur, the extent to which they can be controlled, how they should be treated, and how interventions should be evaluated. To address this gap in the literature, a grounded theory study guided by Kleinman's Explanatory Model questions was conducted with 25 family members of advanced cancer patients. The core category of 'Wayfaring' integrates the key categories of the model and maps onto Kleinman's questions about CACS onset, etiology, natural course, physiological processes/anatomical structures involved, treatment, and the impacts of disease on patient and family. Findings suggest that a divergence between some biomedical constructions of CACS and explanatory models held by family members may fuel the family-health care provider conflict, thereby providing direction for communication with families about care of the patient with anorexia-cachexia.

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BACKGROUND: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these parents are confronted with may lead to specific care needs. In this paper we explore the spiritual dimension of caring for a child with a life-threatening condition from the parents perspective. METHODS: We held an exploratory qualitative study with in-depth interviews with parents of children (0-21) with life-threatening conditions. Interviews were transcribed and subsequently thematically analyzed. RESULTS: Twenty-four parents of 21 children participated in the interviews. The spiritual dimension is an important, although not always visible, aspect of the experience of parents dealing with their child's illness. The main domains with regard to spirituality were: 1) identity; 2) parenthood; 3) connectedness; 4) loss or adjustment of goals; 5) agency; 6) navigating beliefs and uncertainties; and 7) decision-making. Parents also reflected on their spiritual care needs. CONCLUSION: The spiritual dimension plays a central role in the experiences of parents who care for children with life-threatening conditions, but they receive little support in this dimension, and care needs often go unnoticed. If we want to provide high-quality pediatric palliative care including adequate spiritual support for parents, we should focus on the wide range of their spiritual experiences, and provide support that focuses both on loss of meaning as well as on where parents find growth, joy or meaning.

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BACKGROUND: Child maltreatment is a global problem that puts children at risk of mental illness, substance abuse, and premature death. Interdisciplinary collaboration is important in preventing and detecting child maltreatment. In Norway, children undergo universal preventive health assessments and receive complimentary follow-up care from specialized public health nurses in child and family health clinics. These nurses conduct regular check-ups and home visits to monitor children for signs of maltreatment. OBJECTIVE: The objective of this study is to describe how public health nurses at child and family health clinics follow the National Clinical Guidelines to prevent and detect child maltreatment, with a particular focus on clinical procedures and interdisciplinary collaboration. Furthermore, we aim to determine factors that are associated with identification of child maltreatment. DESIGN: A cross-sectional online survey was conducted among public health nurses working in primary care between October 24th and December 31st, 2022. Public health nurses who worked with children aged 0-5 years and had consultations with families were eligible to participate, resulting in 554 responses. The study employed descriptive analysis, including frequency, percentage and mean, as well as a two-step logistic regression analysis. The study was approved by the relevant authority, and informed consent was obtained through questionnaire completion. RESULTS: The public health nurses in this study displayed strong adherence to the guidelines and utilized various comprehensive assessment procedures to monitor child well-being, growth, and development. However, there was limited and infrequent collaboration with other professionals, such as child protection services, general practitioners, and hospitals. Most public health nurses reported occasional suspicion of child maltreatment, with age and years of experience in child and family clinics influencing these suspicions. Older public health nurses were more likely to suspect physical violence, while those with less than two years of experience reported less experience in suspecting maltreatment. Additional education increased the probability of suspecting sexual violence. CONCLUSIONS: This study provides insights into the practices of public health nurses in Norway regarding the detection and prevention of child maltreatment in child and family clinics. While adherence to guidelines is strong, suspicion of maltreatment is relatively rare. Collaboration across agencies is crucial in addressing child maltreatment. Age and experience may influence the detection of maltreatment. Improved collaboration, targeted guidelines, and ongoing professional development are needed to enhance child protection.

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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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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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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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Background: Being a relative to a trauma patient may be a dramatic experience. Often, trauma centre nurses do not feel they have the competences needed to meet relatives experiencing a crisis. Therefore, a need exists to enhance their crisis management competencies. Objective: To investigate relatives' experiences of a nursing crisis management intervention on information, inclusion and support, including the importance of these needs in two Danish trauma centres. Design: A prospective intervention study based on interrupted time series. The intervention, conducted in 2020-2021, consisted of a crisis management training programme. Settings: The Trauma Centre of the Aarhus University Hospital and Aalborg University Hospital in Denmark. Participants: Relatives (18+ years) of critically ill or injured patients (n = 293). Methods: Data were collected using a 32-item questionnaire. The primary outcome was relatives' overall experience of the quality of the information, inclusion and support measured on a visual analogue scale (VAS) (0-10). Secondary outcomes were changes in risk ratios and scores between the periods for each of the three main variables. The outcome was measured as weighted and non-weighted scores, taking into account the importance of each variable. Besides use of interrupted time series, predictive and weight-adjusted analyses were performed. Time series comprised a before-period (6 months), an implementation period (3 months) and an after-period (6 months). Due to ceiling effect, the predictive analysis was dichotomized using the median scores for information, inclusion and support. Results: Overall, no differences were observed between the participants' characteristics in each of the three periods. Comparing the implementation period with the after-period revealed a statistically significant positive difference between the relatives' assessment of crisis management [p = 0.009]. Additionally, the probability of scoring >8 from before to after the intervention increased statistically significantly [Risk ratio 1.21, 95 % confidence interval 1.16-1.27]. The secondary outcomes showed that the greatest change over time was inclusion of relatives [Risk ratio, 1.25 95 % confidence interval 1.15-1.35]. Information had the greatest effect on relatives' experience of nurses' provision of crisis management and was also the needs area that relatives considered most important. However, information was also the needs area that evolved least during the study. Conclusions: Based on the selected cut-off levels, the intervention appeared to have a positive effect on relatives' experiences - especially inclusion of relatives. In the weighted analyses, information was considered most important and also had the greatest effect on relatives' overall experience. Nurses' crisis management competencies should be prioritized in trauma centres.

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Background: Wider social networks are increasingly recognized for supporting people with care needs. Health-promoting initiatives around the end of life aim to foster these social connections but currently provide little insight into how willing people are to help neighbours facing support needs. Objectives: This study describes how willing people are to help neighbours who need support practically or emotionally, whether there is a difference in willingness depending on the type of support needed and what determines this willingness. Design: We applied a cross-sectional survey design. Methods: We distributed 4400 questionnaires to a random sample of people aged >15 across four municipalities in Flanders, Belgium. These surveys included attitudinal and experiential questions related to serious illness, caregiving and dying. Respondents rated their willingness (scale of 1-5) to provide support to different neighbours in hypothetical scenarios: (1) an older person in need of assistance and (2) a caregiver of a dying partner. Results: A total of 2008 questionnaires were returned (45.6%). The average willingness to support neighbours was 3.41 (case 1) and 3.85 (case 2). Helping with groceries scored highest; cooking and keeping company scored lowest. Factors associated with higher willingness included an optimistic outlook about receiving support from others, family caregiving experience and prior volunteering around serious illness or dying. Conclusion: People are generally willing to support their neighbours who need help practically or emotionally, especially when they have prior experience with illness, death or dying and when they felt supported by different groups of people. Community-based models that build support around people with care needs could explore to what extent this willingness translates into durable community support. Initiatives promoting social connection and cohesion around serious illness, caregiving and dying may harness this potential through experiential learning.

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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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BACKGROUND: Little is known about the social difficulties and health care needs of adult Duchenne muscular dystrophy (DMD) patients in Japan, as well as the financial and physical stress experienced by their caregivers. This study aimed to clarify the social circumstances surrounding adult DMD patients and assess the degree of involvement of family members in their care and the associated economic burden of the disorder in Japan. METHODS: Adult DMD patients were identified through the Registry of Muscular Dystrophy (Remudy) in Japan and invited to complete a questionnaire together with a caregiver. Data on health care use, quality of life, work status, informal care, and household expenses were collected to estimate the costs associated with DMD from social and caregiver household perspectives. RESULTS: In total, 234 (63.7%) of 367 adult DMD patients (mean age, 27.4 ± 6.0; range, 20-48 years) completed the questionnaire. Of these, 38 (21%) had developmental disorders (mental retardation, autism, and learning disorders), 57 (33%) experienced bullying in school, and 44 (77%) indicated the reason for bullying to be their physical handicap. Employment histories were noted by 72 (31%), although 23 (10%) lost their jobs mainly due to physical difficulties. Of the 234 patients, 164 (74%) lived with their relatives, and 78% of care time was supplied by family members, in particular, their mothers. The mean rate of care work provided by family members was 81%. Household income of families with an adult DMD patient was lower, whereas the rate of living with parent(s) and grandparent(s) was higher, in comparison with the general Japanese population. CONCLUSIONS: Adult DMD patients in Japan experience many social difficulties from childhood up to adulthood. As adults, many DMD patients experience bullying and workplace difficulties. Families were found to provide most of the care and financial support for DMD patients. Our results suggest the need to improve public patient care systems, including financial support, to address the physical and economic burdens of care for adult DMD patients in Japan.

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BACKGROUND: Little is known about the trend of informal care (unpaid care provided by family or other caregivers) provided to nursing home residents before or during the COVID-19 pandemic. This study assessed this trend during 2010-2021, for all and Medicaid versus non-Medicaid residents. METHODS: Using data from the RAND Health and Retirement Study longitudinal file, our study sample included a total of 2025 resident-years (860 for Medicaid and 1165 for non-Medicaid residents). We fit two-part regression models to determine adjusted trends in average amount of informal care over time, and difference by resident Medicaid status. RESULTS: Informal care received by residents reduced substantially over time, from an average of 39.2 h in the past month of interview in 2010-11 to 23.2 h in 2018-19, and then to 11.2 h in the COVID-19 pandemic (2020-21). The reduced hours were due to both reduced percentages of nursing home residents who received any informal care and reduced hours of care among those who did receive it over time. Multivariable analyses confirmed this trend and similar downward trends for Medicaid versus non-Medicaid residents. Medicaid residents on average received 10.02 fewer hours of informal care per month (95% confidence interval -17.16, -2.87; p = 0.006) than non-Medicaid residents after adjustment for resident characteristics and time trends. CONCLUSION: Informal care provided to nursing home residents during 2010-2021 reduced over time, especially during the COVID-19 pandemic (2020-21). Medicaid residents tended to receive less informal care than non-Medicaid residents.

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Introducción La pandemia derivada de la infección por SARS-CoV-2 propició cambios en los cuidados tanto a familiares como a pacientes de cuidados intensivos durante las diferentes olas de incidencia del virus. La línea de humanización seguida por la mayoría de los hospitales se vio gravemente afectada por las restricciones aplicadas. Como objetivo, planteamos conocer las modificaciones experimentadas durante las diferentes olas de la pandemia por SARS-CoV-2 en España respecto a la política de visitas a los pacientes en UCI, el acompañamiento al final de la vida, y el uso de las nuevas tecnologías de la comunicación entre familiares, pacientes y profesionales. Métodos Estudio descriptivo transversal multicéntrico mediante encuesta a las UCI españolas desde febrero a abril de 2022. Se realizaron métodos de análisis estadísticos a los resultados según lo apropiado. El estudio fue avalado por la Sociedad Española de Enfermería Intensiva y Unidades Coronarias. Resultados Respondieron un 29% de las unidades contactadas. Los minutos de visita diarios de los familiares se redujeron drásticamente de 135 (87,5-255) a 45 (25-60) en el 21,2% de las unidades que permitían su acceso, mejorando levemente con el paso de las olas. En el caso de duelo, la permisividad fue mayor, aumentando el uso de las nuevas tecnologías para la comunicación paciente-familia en el caso del 96,5% de las unidades. Conclusiones Las familias de los pacientes ingresados en UCI durante las diferentes olas de la pandemia por COVID-19 han experimentado restricciones en las visitas y cambio de la presencialidad por técnicas virtuales de comunicación. Los tiempos de acceso se redujeron a niveles mínimos durante la primera ola, recuperándose con el avance de la pandemia pero sin llegar nunca a los niveles iniciales... (AU)

Introduction The pandemic derived from the SARS-CoV-2 infection led to changes in care for both relatives and intensive care patients during the different waves of incidence of the virus. The line of humanization followed by the majority of the hospitals was seriously affected by the restrictions applied. As an objective, we propose to know the modifications suffered during the different waves of the SARS-CoV-2 pandemic in Spain regarding the policy of visits to patients in the ICU, monitoring at the end of life, and the use of new technologies of communication between family members, patients and professionals. Methods Multicenter cross-sectional descriptive study through a survey of Spanish ICUs from February to April 2022. Statistical analysis methods were performed on the results as appropriate. The study was endorsed by the Spanish Society of Intensive Nursing and Coronary Units. Results Twenty-nine percent of the units contacted responded. The daily visiting minutes of relatives dropped drastically from 135 (87.5-255) to 45 (25-60) in the 21.2% of units that allowed their access, improving slightly with the passing of the waves. In the case of bereavement, the permissiveness was greater, increasing the use of new technologies for patient-family communication in the case of 96.5% of the units. Conclusions The family of patients admitted to the ICU during the different waves of the COVID-19 pandemic have suffered restrictions on visits and a change from face-to-face to virtual communication techniques. Access times were reduced to minimum levels during the first wave, recovering with the advance of the pandemic but never reaching initial levels. Despite the implemented solutions and virtual communication, efforts should be directed towards improving the protocols for the humanization of healthcare that allow caring for families and patients whatever the healthcare context. (AU)

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Introducción La pandemia derivada de la infección por SARS-CoV-2 propició cambios en los cuidados tanto a familiares como a pacientes de cuidados intensivos durante las diferentes olas de incidencia del virus. La línea de humanización seguida por la mayoría de los hospitales se vio gravemente afectada por las restricciones aplicadas. Como objetivo, planteamos conocer las modificaciones experimentadas durante las diferentes olas de la pandemia por SARS-CoV-2 en España respecto a la política de visitas a los pacientes en UCI, el acompañamiento al final de la vida, y el uso de las nuevas tecnologías de la comunicación entre familiares, pacientes y profesionales. Métodos Estudio descriptivo transversal multicéntrico mediante encuesta a las UCI españolas desde febrero a abril de 2022. Se realizaron métodos de análisis estadísticos a los resultados según lo apropiado. El estudio fue avalado por la Sociedad Española de Enfermería Intensiva y Unidades Coronarias. Resultados Respondieron un 29% de las unidades contactadas. Los minutos de visita diarios de los familiares se redujeron drásticamente de 135 (87,5-255) a 45 (25-60) en el 21,2% de las unidades que permitían su acceso, mejorando levemente con el paso de las olas. En el caso de duelo, la permisividad fue mayor, aumentando el uso de las nuevas tecnologías para la comunicación paciente-familia en el caso del 96,5% de las unidades. Conclusiones Las familias de los pacientes ingresados en UCI durante las diferentes olas de la pandemia por COVID-19 han experimentado restricciones en las visitas y cambio de la presencialidad por técnicas virtuales de comunicación. Los tiempos de acceso se redujeron a niveles mínimos durante la primera ola, recuperándose con el avance de la pandemia pero sin llegar nunca a los niveles iniciales... (AU)

Introduction The pandemic derived from the SARS-CoV-2 infection led to changes in care for both relatives and intensive care patients during the different waves of incidence of the virus. The line of humanization followed by the majority of the hospitals was seriously affected by the restrictions applied. As an objective, we propose to know the modifications suffered during the different waves of the SARS-CoV-2 pandemic in Spain regarding the policy of visits to patients in the ICU, monitoring at the end of life, and the use of new technologies of communication between family members, patients and professionals. Methods Multicenter cross-sectional descriptive study through a survey of Spanish ICUs from February to April 2022. Statistical analysis methods were performed on the results as appropriate. The study was endorsed by the Spanish Society of Intensive Nursing and Coronary Units. Results Twenty-nine percent of the units contacted responded. The daily visiting minutes of relatives dropped drastically from 135 (87.5-255) to 45 (25-60) in the 21.2% of units that allowed their access, improving slightly with the passing of the waves. In the case of bereavement, the permissiveness was greater, increasing the use of new technologies for patient-family communication in the case of 96.5% of the units. Conclusions The family of patients admitted to the ICU during the different waves of the COVID-19 pandemic have suffered restrictions on visits and a change from face-to-face to virtual communication techniques. Access times were reduced to minimum levels during the first wave, recovering with the advance of the pandemic but never reaching initial levels. Despite the implemented solutions and virtual communication, efforts should be directed towards improving the protocols for the humanization of healthcare that allow caring for families and patients whatever the healthcare context. (AU)

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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.