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Zusammenfassung In Deutschland leben etwa 15 Millionen Eltern mit minderjährigen Kindern. Von diesen erkranken jährlich rund 37.000 Mütter und Väter neu an Krebs. Bei Frauen stellt Brustkrebs dabei die mit Abstand häufigste Tumorlokalisation aller Krebsneuerkrankungen dar. Erkranken Eltern im mittleren Erwachsenenalter an Krebs, müssen sie sich neben wichtigen Lebensbereichen und -entscheidungen wie Familienplanung und -gründung, Ehe/Partnerschaft, Arbeit oder Karriere mit Themen wie Krankheit, Endlichkeit und Sinnfragen auseinandersetzen. Erkrankte mit minderjährigen Kindern stehen außerdem vor einer zusätzlichen organisatorischen und emotionalen Belastung. Dies umfasst die Verarbeitung von physischen und psychischen Auswirkungen der Erkrankung, die Organisation der Kinderbetreuung, aber auch die Frage nach der Kommunikation über die Krankheit mit den eigenen Kindern. Kinder erleben durch die Erkrankung der Eltern Veränderungen und bringen unterschiedliche Voraussetzungen mit, um mit dieser Situation umzugehen. Sie haben ein erhöhtes Risiko, emotionale oder Verhaltensauffälligkeiten zu entwickeln, z. B. durch das Zurückstellen eigener Bedürfnisse. Da Kinder sich für Veränderungen in ihrem Leben ohne Erklärung eigene Antworten suchen, sollten sie altersgerecht und so früh wie möglich über die Erkrankung informiert und einbezogen werden. Den betroffenen Familien kann psychoonkologische Unterstützung durch die Behandelnden helfen, um mit der veränderten Situation umzugehen. Eine proaktive Kommunikation über familiäre Themen, das Wissen über regionale Unterstützungsangebote und über Auswirkungen der Erkrankung ermöglichen es, die Bedürfnisse der Familien zu erkennen und zu adressieren. Zur Sensibilisierung und Vermittlung von Basiswissen steht ein kostenloses E‑Learning für Behandelnde zu Verfügung.

Introduction Children with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers are interested in developing interventions to improve family‐centred care need information about the characteristics of existing interventions, their development and the domains of family‐centred care that they address. We conducted a scoping review that aimed to identify and characterize recent family‐centred interventions designed to improve experiences with care for children with chronic conditions. Methods We searched Medline, Embase, PsycInfo and Cochrane databases, and grey literature sources for relevant articles or documents published between 1 January 2019 and 11 August 2020 (databases) or 7–20 October 2020 (grey literature). Primary studies with ≥10 participants, clinical practice guidelines and theoretical articles describing family‐centred interventions that aimed to improve experiences with care for children with chronic conditions were eligible. Following citation and full‐text screening by two reviewers working independently, we charted data covering study characteristics and interventions from eligible reports and synthesized interventions by domains of family‐centred care. Results Our search identified 2882 citations, from which 63 articles describing 61 unique interventions met the eligibility criteria and were included in this review. The most common study designs were quasiexperimental studies (n = 18), randomized controlled trials (n = 11) and qualitative and mixed‐methods studies (n = 9 each). The most frequently addressed domains of family‐centred care were communication and information provision (n = 45), family involvement in care (n = 37) and access to care (n = 30). Conclusion This review, which identified 61 unique interventions aimed at improving family‐centred care for children with chronic conditions across a range of settings, is a concrete resource for researchers, health care providers and administrators interested in improving care for this high‐needs population. Patient or Public Contribution This study was co‐developed with three patient partner co‐investigators, all of whom are individuals with lived experiences of rare chronic diseases as parents and/or patients and have prior experience in patient engagement in research (I. J., N. P., M. S.). These patient partner co‐investigators contributed to this study at all stages, from conceptualization to dissemination.

Background Despite international bodies calling for increased patient and family involvement, these concepts remain poorly defined within literature on critical and intensive care settings. Objective This scoping review investigates the extent and range of literature on patient and family involvement in critical and intensive care settings. Methodological and empirical gaps are identified, and a future agenda for research into optimizing patient and family involvement is outlined. Methods Searches of MEDLINE, CINAHL, Social Work s and PsycINFO were conducted. English‐language articles published between 2003 and 2014 were retrieved. Articles were included if the studies were undertaken in an intensive care or critical care setting, addressed the topic of patient and family involvement, included a sample of adult critical care patients, their families and/or critical care providers. Two reviewers extracted and charted data and analysed findings using qualitative content analysis. Findings A total of 892 articles were screened, 124 were eligible for analysis, including 61 quantitative, 61 qualitative and 2 mixed‐methods studies. There was a significant gap in research on patient involvement in the intensive care unit. The analysis identified five different components of family and patient involvement: (i) presence, (ii) having needs met/being supported, (iii) communication, (iv) decision making and (v) contributing to care. Conclusion Three research gaps were identified that require addressing: (i) the scope, extent and nature of patient involvement in intensive care settings; (ii) the broader socio‐cultural processes that shape patient and family involvement; and (iii) the bidirectional implications between patient/family involvement and interprofessional teamwork.

Introduction The introduction of effective, evidence‐based approaches to centredness in health care is hindered by the fact that research results are not easily accessible. This is partly due to the large volume of publications available and because the field is closely linked to and in some ways encompasses adjoining fields of research, for example, shared decision making and narrative medicine. In an attempt to survey the field of centredness in health care, a systematic overview of reviews was conducted with the purpose of illuminating how centredness in health care is presented in current reviews. Methods Searches for relevant reviews were conducted in the databases PubMed, Scopus, Cinahl, PsychINFO, Web of Science and EMBASE using terms connected to centredness in health care. Filters specific to review studies of all types and for inclusion of only English language results as well as a time frame of January 2017–December 2018, were applied. Results The search strategy identified 3697 unique reviews, of which 31 were included in the study. The synthesis of the results from the 31 reviews identified three interrelated main themes: Attributes of centredness (what centredness is), Translation from theory into practice (how centredness is done) and Evaluation of effects (possible ways of measuring effects of centredness). Three main attributes of centeredness found were: being unique, being heard and shared responsibility. Aspects involved in translating theory into practice were sufficient prerequisites, strategies for action and tools used in safeguarding practice. Further, a variety and breadth of measures of effects were found in the included reviews. Conclusions Our synthesis demonstrates that current synthesized research literature on centredness in health care is broad, as it focuses both on explorations of the conceptual basis and the practice, as well as measures of effects. This study provides an understanding of the commonalities identified in the reviews on centredness in healthcare overall, ranging from theory to practice and from practice to evaluation. Patient or Public Contribution Patient representatives were involved during the initiation of the project and in decisions about its focus, although no patient or public representatives made direct contributions to the review process.

Background The importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature. Methods A scoping literature review was conducted using established methodology. Four research databases and one large grey literature database were searched, in addition to hand‐searching relevant journals. Articles meeting specific inclusion criteria were retrieved and data extracted. Common characteristics were identified and summarized. Results Ten articles were included in the review, assessed as having low‐to‐moderate quality. Parent co‐researchers were engaged in the planning, design, data collection, analysis and dissemination aspects of research. Structural enablers included reimbursement and childcare. Benefits of engaging parent co‐researchers included enhancing the relevance of research to the target population, maximizing research participation and parent empowerment. Challenges included resource usage, wide‐ranging experiences, lack of role clarity and power differences between parent co‐researchers and researchers. Evaluation of parent co‐researcher engagement was heterogeneous and lacked rigour. Conclusions A robust evidence base is currently lacking in how to effectively engage parent co‐researchers. However, the review offers some insights into specific components that may form the basis of future research to inform the development of best practice guidelines.

Open visitation in adult intensive care units report benefits such as reduced frequency and duration of deliriums, improved patient and family satisfaction, and reduced anxiety and depression of family members. ‘Being close’ is one of the most basic and important needs of family members of critically ill patients. Open visitation provides an increased opportunity of being at the bedside with the patient, however, it is not universally embraced by adult intensive care units worldwide. To critically appraise the literature concerning open visitation in adult intensive care units. A structured literature review. This review was guided by the methodology by Kable et al. (2012). Sixteen articles are included in the review. Despite the documented benefits, several challenges exist which hinder broad application of open visitation in adult intensive care units. This review acknowledged challenges faced in adopting an open visiting policy in adult intensive care units such as negative staff perceptions and attitudes; patient protection; family and cultural consideration, as well as organisational challenges. The lack of a clear and consistent definition of open visitation is problematic, and strategies are urgently needed to support staff to provide holistic patient- and family-centred care.

To examine parent perception of how the physical and cultural environment of the paediatric intensive care unit impacted the implementation of family-centred care as outlined by the Institute for Patient and Family Centered Care. A qualitative descriptive design utilizing secondary analysis from a longitudinal study. Sixty-one interviews with three mothers and three fathers (31 interviews with mothers, 30 interviews with fathers) of infants with complex congenital heart defects treated in a paediatric intensive care unit were subjected to secondary analysis via content analysis. The previously completed individual interviews with parents took place at least monthly ranging from soon after birth of their infant to one year of age or infant death, whichever occurred first. The family-centred care core concepts of information sharing, participation, respect and dignity were present in parent interviews. Parents indicated that the physical and cultural environment of the pediatric intensive care unit impacted their perceptions of how each of the core concepts was implemented by clinicians. The unit environment both positively and negatively impacted how parents experienced their infant’s hospitalisation. In the paediatric intensive care unit, family centred care operationalised as policy differed from actual parent experiences. The impact of the physical and cultural environment should be considered in the delivery of critical care, as the environment was shown to impact implementation of each of the core concepts.

Promoting self-care is the core response strategy of the global health system to the burden of stroke. Although self-care in stroke represents a dyadic phenomenon, the dyadic self-care experience of stroke survivors and their caregivers is often overlooked in clinical practice. The aim of this study was to explore the dyadic self-care experience of stroke survivors and their caregivers. A descriptive qualitative design was used to conduct the study. The Consolidated Criteria for Reporting Qualitative Research was used for study reporting. A total of 21 stroke survivor-caregiver dyads were recruited for this study between May 2022 and September 2022. Data were collected through semistructured interviews and analyzed using thematic analysis. In this study, four themes were identified: (1) poor relationship quality of the dyads, (2) dyadic incongruence in managing stroke, (3) a slow and tiring dyadic self-care process and (4) happy cooperation in coping with dyadic self-care. Healthcare professionals should give greater consideration to the contradictions and disparities that may arise between stroke survivors and caregivers during the self-care process. It is crucial for them to provide personalized and tailored support and interventions that can assist these individuals in achieving a more optimal balance in their dyadic self-care. Patients were involved in the formulation of interview questions for this study. No members of the public were involved in this study.

Patient and family-centred care is considered best practice. Such an approach is associated with high quality and positive experiences of care, and family presence at the bedside is encouraged and enabled. The COVID-19 pandemic, however, resulted in strictly enforced restrictions on hospital visitation, which threatened health professionals’ ability to provide family-centred care. To explore the impact of COVID-19 visitor restrictions on family relationships during critical illness at the end of life in the intensive care unit. A retrospective collective case study approach was taken, using semi-structured interviews, conducted via telephone or Zoom, in accordance with COVID-19 restrictions. Two participant groups, bereaved next-of-kin of patients who died in the intensive care unit (n = 6) and critical care nurses (n = 3) from a major metropolitan hospital were included. Interviews with bereaved next-of-kin lasted 25–59 (mean = 41) minutes, and critical care nurse interviews lasted 31–52 (mean = 43) minutes. Inductive content analysis revealed five themes: (i) the first farewell, the significance not realised at the time; (ii) confusing rules and restrictions, which emphasised physical and created emotional barriers to family connections; (iii) inadequate communication, which further impacted next-of-kin; (iv) final farewells, which were rushed, emotional and afforded no privacy; and (v) reflecting back. This collective case study demonstrates the profound impact visitor restrictions have had on bereaved next-of-kin and the wider family. A family-centred approach to care, protecting and prioritising family connection, and recognising the patient as a person who is part of a larger family unit must be emphasised. Critical care teams must consider their own approach to end-of-life care during times of visitor restrictions, finding new, flexible and innovative ways to improve communication, promote family-centred care, maintain the patient-family connection and facilitate end-of-life cultural customs, and rituals imperative to next-of-kin and the wider family unit.

To describe the perspectives of health care providers and hospital administrators on their experiences of providing care for infants in Level II neonatal intensive care units and their families. We conducted 36 qualitative interviews with neonatal health care providers and hospital administrators and analysed data using a descriptive interpretive approach. 10 Level II Neonatal Intensive Care Units in a single, integrated health care system in one Canadian province. Three major themes emerged: (1) providing family-centred care, (2) working amidst health care system challenges, and (3) recommending improvements to the health care system. The overarching theme was that the health care system was making ‘too much noise’ for health care providers and hospital administrators to provide family-centred care in ways that would benefit infants and their families. Recommended improvements included: refining staffing models, enhancing professional development, providing tools to deliver consistent care, recognising parental capacity to be involved in care, strengthening continuity of care, supporting families to be with their infant, and designing family-friendly environments. When implementing family-centred care initiatives, health care providers and hospital administrators need to consider the complexity of providing care in Level II Neonatal Intensive Care Units, and recognise that health care system changes may be necessary to optimise implementation.