Percepción de los familiares de pacientes críticos en relación a la comunicación que le brinda el profesional de enfermería de la unidad de cuidados intensivos / Perception of the relatives of critically ill patients in relation to the communication pro-vided by the nursing professional of the intensive care unit

Introducción: cuando un individuo es hospitalizado en UCI para control y monitorización permanente de su salud, su cuidado está orientado específicamente a la asistencia plena de médicos y personal de enfermería. La complejidad de estos cuidados genera una crisis situacional y emocional en la familia que causa ansiedad, estrés, miedo y duda. La forma en la que el enfermero intervenga con el familiar en situaciones críticas es lo que va a determinar la percepción de los mismos hacia el cuidado de enfermería, en tanto la comunicación y el apoyo emocional forma parte de la competencia profesional y contribuye al cuidado holístico del paciente y familia. Objetivo: Determinar la percepción de los familiares de pacientes, respecto a la comunicación que le brinda el profesional de enfermería en la unidad de cuidados críticos. Materiales y método: Se realizó un estudio de tipo cuantitativo, descriptivo y de corte transversal. La muestra estuvo constituida por 40 familiares adultos responsables del paciente hospitalizado en la unidad de terapia intensiva, durante los meses Junio - septiembre del 2023. El instrumento de recolección de información fue un cuestionario de "Percepción de los familiares de los Pacientes Críticos, respecto a la intervención de Enfermería durante su Crisis Situacional"; el mismo fue utilizado y validado por la autora Franco Canales Rosa aplicado en el Hospital Nacional Edgardo Rebagliati, Abril de 2003. Resultados:Los resultados muestran que la percepción global de los familiares, es favorable, respecto a la comunicación verbal, comunicación no verbal y el apoyo emocional[AU]

Introduction: health is the condition in which every living being enjoys absolute well-being both physically and mentally and socially, when it is affected either by a pathology or by general accidents; Given the physical condition of the individual, he or she is often hospitalized in the ICU for permanent control and monitoring. Your care is specifically oriented towards the full assistance of Doctors and Nurses. The complexity of this care generates a situational and emotional crisis in the immediate family that causes anxiety, stress, fear and doubt. The way in which the nurse supports the family member in critical or distressing situations is what will determine the perception of the family members towards the nurses, since communication and emotional support are part of the professional competence and contribute to the holistic care of the patient. patient and family. It is a care that is reflected in the feeling that the nurses have that when they do it, the families are very grateful and that, without a doubt, it is their job. Objective: Determine the perception of the patient's relatives regarding the communication provided by the nursing professional in the critical care unit of a private institution. Materials and Methods: A quantitative, descriptive and cross-sectional study was carried out. The sample was made up of 40 adult relatives responsible for the patient hospitalized in the Adult intensive care unit, during the months of June - September 2023. The information collection instrument was a questionnaire on "Perception of relatives of Critical Patients, regarding to Nursing intervention during their Situational Crisis"; It was used and validated by the author Franco Canales Rosa applied at the Edgardo Rebagliati National Hospital, April 2003. Results:The results show that the overall perception of family members is favorable, regarding verbal communication, non-verbal communication and emotional support[AU]

Introdução: saúde é a condição em que todo ser vivo goza de absoluto bem-estar tanto físico quanto mental e social, quando é acometido por alguma patologia ou por acidentes gerais; Dada a condição física do indivíduo, muitas vezes ele é internado em UTI para controle e monitoramento permanente. O seu atendimento é especificamente orientado para a assistência integral de Médicos e Enfermeiros. A complexidade desse cuidado gera uma crise situacional e emocional na família imediata que causa ansiedade, estresse, medo e dúvidas. A forma como o enfermeiro apoia o familiar em situações críticas ou angustiantes é o que determinará a percepção dos familiares em relação aos enfermeiros, uma vez que a comunicação e o apoio emocional fazem parte da competência profissional e contribuem para o cuidado holístico do paciente. paciente e família. É um cuidado que se reflete no sentimento que os enfermeiros têm de que quando o fazem as famílias ficam muito gratas e que, sem dúvida, é o seu trabalho. Objetivo: Determinar a percepção dos familiares do paciente quanto à comunicação prestada pelo profissional de enfermagem na unidade de terapia intensiva de uma instituição privada. Materiais e Métodos: Foi realizado um estudo quantitativo, descritivo e transversal. A amostra foi composta por 40 familiares adultos responsáveis pelo paciente internado na Unidade de Terapia Intensiva Adulto, durante os meses de junho a setembro de 2023. O instrumento de coleta de informações foi um questionário sobre "Percepção dos familiares de Pacientes Críticos, quanto à intervenção de Enfermagem durante a sua crise situacional"; Foi utilizado e validado pelo autor Franco Os resultados mostram que a percepção geral dos familiares é favorável, no que diz respeito à comunicação verbal, à comunicação não verbal e ao apoio emocional.Canales Rosa apl i c a d o n o Hospital Nacional Edgardo Rebagliati, abril de 2003. Resultados: Os resultados mostram que a percepção geral dos familiares é favorável, no que diz respeito à comunicação verbal, à comunicação não verbal e ao apoio emocional.

Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning.

Importance: Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon. Objectives: To determine the feasibility and acceptability of the Pediatric Serious Illness Communication Program (PediSICP) and explore family-centered outcomes. Design, Setting, and Participants: This cohort study was a single-group pilot study of the PediSICP in adolescents and young adults (AYAs; age ≥13 y) with serious illness, parents of seriously ill children, and interprofessional clinicians from April 2021 to March 2023 in a quaternary care pediatric hospital. Duration of follow-up was 1 month. Data were analyzed from January 2022 to March 2023. Exposure: The PediSICP includes clinician training preceding an ACP communication occasion supported by communication guides and a template for electronic medical record documentation. Main Outcomes and Measures: Outcomes of interest were parent, patient, and clinician experiences with and perceptions of the PediSICP. Feasibility was defined a priori as at least 70% clinician intervention completion rates. Results: A total of 10 virtual trainings were conducted among 40 clinicians, including 27 physicians, 7 nurse practitioners, 5 nurses, and 1 respiratory therapist, and 30 trained clinicians (75%) conducted and documented 42 ACP conversations with 33 parents (median [IQR] age, 43 [35-51] years; 25 [76%] female) and 5 AYAs (median [IQR] age, 19 [17-19] years; 3 [60%] female) who completed the intervention. The median (IQR) conversation duration was 27 (10-45) minutes. Most clinicians (29 clinicians [97%]) agreed that they felt prepared for the conversation, and all clinicians recommended the PediSICP. Parents reported participation was worthwhile (27 parents [84%]), they felt listened to (31 parents [94%]), and would recommend the PediSICP (28 parents [85%]). Parents endorsed higher therapeutic alliance after the PediSICP intervention compared with before (The Human Connection scale mean [SD] score, 57.6 [6.4] vs 55.3 [7.8]; P = .03) and decreased anxiety immediately after the intervention (Generalized Anxiety Disorder-7-item mean [SD] score, 10.1 [7.3] vs 8.4 [6.9]; P = .003), which persisted at the 1-month follow-up (mean [SD] score, 7.7 [6.8]; P = .03). Conclusions and Relevance: This pilot cohort study found that the PediSICP was feasible, acceptable, and highly valued by clinicians and parents of children with serious illness. These findings suggest that the PediSICP may empower interprofessional clinicians and improve ACP with families of children and AYAs who are seriously ill.

Virtual Patient/Family Communication in the Acute Care Setting.

Patient and family-centered care strategies see patients and families as valuable healthcare team members and are therefore treated as essential clinical partners to achieve safe, high-quality care. Traditionally, hospitals have relied on physical presence as the primary strategy for including families in shared decision-making. During COVID-19, widespread visitor restrictions removed this primary strategy. Hospitals rapidly deployed virtual communication tools to address the challenges visitor restrictions created. The rapid deployment produced benefits and unintended consequences, especially for the healthcare providers. Through a series of qualitative interviews with family members and healthcare providers, consistent themes were identified and mapped to the sociotechnical model. This project identified barriers to adoption and proposed corresponding success criteria. Although the project focused on implementing virtual communication in the context of the COVID-19 pandemic, virtual communication strategies can likely support family-centered care goals outside of the pandemic context.

Mixed-methods evaluation of a face-to-face educational intervention for health and social care professionals to deliver family-centred cancer supportive care when a parent with dependent children is at end of life.

OBJECTIVE: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (<18). METHODS: An evidence-based and theory-driven face-to-face educational intervention was developed and evaluated using three levels of Kirkpatrick's Model of Evaluation. Pre-test, post-test surveys were completed immediately before-and-after the intervention using a validated self-efficacy scale and single-item questions evaluating perceived usefulness and relevance (levels one/two). Qualitative interviews ≥ 3-months post-intervention explored if, and how the intervention impacted professionals' practice (level three). Fourteen sessions were delivered at oncology settings to 347 professionals between 2021 and 2023. Two hundred seventy four professionals completed the pre-test survey, with 239 completing the post-test survey. Fourteen professionals were interviewed between three-and 19-months post-intervention. RESULTS: Quantitative findings demonstrated a statistically significant improvement in self-efficacy post-educational intervention (p < 0.001). Qualitative data highlighted professionals gained new approaches to progress end of life conversations with parents, despite some familial resistance to sharing the reality of the situation with children. Positive intervention content shaping clinical practice included the bereaved parent's lived experience, communication framework and roleplay videos. Some professionals considered a booster session and opportunities to practice conversations necessary to further consolidate learning into practice. CONCLUSIONS: Evidence and theory-driven education can positively impact professionals' provision of family-centred cancer care. Future studies should explore the impact of this educational intervention on familial outcomes. Alongside a sustainable delivery of this intervention, advanced communication skills programmes should incorporate parent-child end of life conversations.

Clinician Perceptions of Family-Centered Care in Pediatric and Congenital Heart Settings.

Importance: Family-centered care recognizes families as central to child health and well-being and prioritizes clinician collaboration with families to ensure optimal pediatric care and outcomes. Clinician interpersonal sensitivity and communication skills are key to this approach. Objective: To examine perceptions of and factors associated with family-centered care among clinicians working in pediatric and congenital heart care. Design, Setting, and Participants: In this cross-sectional study, participants from diverse clinical disciplines (pediatric cardiology, cardiothoracic surgery, nursing, anesthesia, neonatology, intensive care, psychology, and others), completed an online survey between June 2020 and February 2021. Participants included physicians, surgeons, nurses, and allied and mental health professionals at an Australian quaternary pediatric hospital network. Statistical analysis was performed from August 2022 to June 2023. Main Outcomes and Measures: Family-centered care across 4 domains (showing interpersonal sensitivity, treating people respectfully, providing general information, and communicating specific information) was measured using the validated Measure of Processes of Care for Service Providers. Clinician burnout (emotional exhaustion, depersonalization, and personal accomplishment), confidence responding to families' psychosocial needs, and psychological, clinical role, and sociodemographic factors were also assessed. Informed by theory, hierarchical linear regression was used to identify factors associated with family-centered care. Results: There were 212 clinicians (177 women [84.3%]; 153 nurses [72.2%], 32 physicians [15.1%], 22 allied and mental health professionals [10.4%], 5 surgeons [2.3%]; 170 [80.2%] aged 20-49 years) who participated (55% response rate). Of the 4 family-centered care domains, scores for treating people respectfully were highest and associated with greater clinician confidence responding to families' psychosocial needs (effect size [ß], 0.59 [95% CI, 0.46 to 0.72]; P < .001), lower depersonalization (ß, 0.04 [95% CI, -0.07 to -0.01]; P = .02), and a greater sense of personal accomplishment at work (ß, 0.02 [95% CI, 0.01 to 0.04]; P = 0.04). Greater interpersonal sensitivity was associated with greater confidence responding to families' psychosocial needs (ß, 0.80 [95% CI, 0.62 to 0.97]; P < .001), a greater sense of personal accomplishment at work (ß, 0.03 [95% CI, 0.01 to 0.05]; P = .04), and lower use of approach-based coping, such as problem-solving (ß, 0.37 [95% CI, -0.71 to -0.02]; P = .04). Conclusions and Relevance: In this cross-sectional study, burnout and confidence responding to families' psychosocial needs were associated with clinicians' perceptions of family-centered care. These findings suggest that targeted interventions to address these factors may benefit clinicians and also potentially strengthen the practice of family-centered care in pediatric and congenital heart settings.

The centrality of healthcare and education interactions - An Interpretive Phenomenological Analysis of experiences of parents of children with Ehlers-Danlos Syndrome.

BACKGROUND: Ehlers-Danlos Syndrome (EDS) is a rare group of connective tissue disorders and, as such, the diagnosis can often be delayed. While emerging research indicates that there may be adverse psychosocial consequences for the child, little is known about the processes behind such outcomes, including the psychosocial impact of this rare disease on family life. AIMS: To extend our understanding, we examined the lived experiences of parenting a child with EDS. METHODS: Four parents recruited from a specialist child development clinic participated in semi-structured interviews. Data were analysed using Interpretative Phenomenological Analysis RESULTS: Three superordinate themes were identified: (1) Challenges Associated with hEDS, (2) Interactions with Professionals and (3) "Pulling and Pacing": Life with EDS. DISCUSSION: This is one of the first qualitative studies to gain an insight into the lived experiences of parenting a child with EDS. Findings had systemic implications. Specifically, we demonstrate the need for raising awareness in health and educational professionals about how to better support families to support the child, as well as the importance of promoting effective advocacy skills in parents.

Parent Perspectives on Communication Quality in the Neonatal Intensive Care Unit.

BACKGROUND: Though prior literature has demonstrated that communication in the Neonatal Intensive Care Unit (NICU) needs to be improved, in-depth descriptions of parents' views of NICU communication are lacking. PURPOSE: We sought (1) to explore parent perceptions of communication in the NICU and (2) to understand parents' communication needs and preferences. METHODS: We conducted in-depth semi-structured cognitive interviews utilizing concurrent probes with parents of 10 patients in our urban level IV Neonatal Intensive Care Unit over a period of 4 months (July 2021-October 2021). Interview questions were derived from the Quality of Communication scale. We conducted thematic analysis of interview transcripts modeled after work by Braun and Clarke. RESULTS: Four overarching themes were identified: Strengths, Challenges, People, and Coping Strategies. Parents reported a range of communication quality in the NICU. Results revealed that the first 48 hours of NICU hospitalization represent a period of vulnerability and uncertainty for parents. Parents value clear yet hopeful communication about a baby's clinical status and expected course. IMPLICATIONS FOR PRACTICE AND RESEARCH: We hope that the concrete findings from this study can both inform practice in the NICU now and influence practice guidelines to include such components as emphasis on the first 48 hours, desire for proactive information sharing, and the importance of including hope.

Physicians' perspectives on COVID-19 vaccinations for children: a qualitative exploration in Ontario, Canada.

OBJECTIVES: Parents' decisions to vaccinate their children against COVID-19 are complex and often informed by discussions with primary care physicians. However, little is known about physicians' perspectives on COVID-19 vaccinations for children or their experiences counselling parents in their decision-making. We explored physicians' experiences providing COVID-19 vaccination recommendations to parents and their reflections on the contextual factors that shaped these experiences. DESIGN: We conducted an interpretive qualitative study using in-depth interviews. We analyzed the data using reflexive thematic analysis and a socioecological framework. SETTING: This study involved primary care practices associated with The Applied Research Group for Kids (TARGet Kids!) primary care research network in the Greater Toronto Area, Ontario, Canada. PARTICIPANTS: Participants were 10 primary care physicians, including family physicians, paediatricians and paediatric subspecialists. RESULTS: Participants discussed elements at the individual level (their identity, role, and knowledge), the interpersonal level (their relationships with families, responsiveness to parents' concerns, and efforts to build trust) and structural level (contextual factors related to the evolving COVID-19 climate, health system pandemic response, and constraints on care delivery) that influenced their experiences providing recommendations to parents. Our findings illustrated that physicians' interactions with families were shaped by a confluence of their own perspectives, their responses to parents' perspectives, and the evolving landscape of the broader pandemic. CONCLUSIONS: Our study underscores the social and relational nature of vaccination decision-making and highlights the multiple influences on primary care physicians' experiences providing COVID-19 vaccination recommendations to parents. Our findings offer suggestions for future COVID-19 vaccination programmes for children. Delivery of new COVID-19 vaccinations for children may be well suited within primary care offices, where trusting relationships are established, but physicians need support in staying knowledgeable about emerging information, communicating available evidence to parents to inform their decision-making and dedicating time for vaccination counselling.

Parental barriers to implementing family-centred care in a neonatal intensive care unit in Islamic Republic of Iran.

Background: Studies have shown short-term and long-term positive effects of family-centred care interventions on neonatal and maternal health, and developmental outcomes in neonatal intensive care units. However, some challenges and barriers limit implementation of family-centred care. Aim: To investigate parental barriers to implementing family-centred care in a neonatal intensive care unit in Islamic Republic of Iran. Methods: A conventional content analysis was conducted at a neonatal intensive care unit in Tehran, Islamic Republic of Iran from 2020 to 2021. Twenty semi-structured interviews and 9 field notes were conducted. The interview data were analysed using the Graneheim and Lundman method and the demographic data were analysed using SPSS version 21. Findings: Two themes emerged from the data analysis. The first theme was "inefficiency of playing the parental role", with 2 main categories of "face unpleasant feelings" and "inappropriate presence and participation". The second theme was "ineffective involvement of parents in the care", with 3 main categories of "lack of effective communication with personnel", "interference of parents in the treatment process", and "given insufficient information by parents". Conclusion: Parental barriers to the provision of family-centred care featured prominently in the study. Therefore, to improve neonatal and family health, there is a need for involvement, coordination and effective communication between the medical teams and parents to create a supportive and friendly environment in neonatal intensive care units.

"Doing being a good parent" in the pediatric clinic: Parents' knowledge displays in advice requests on infants' everyday care.

Parents and pediatricians play pivotal roles in promoting a nurturing environment for children's growth and development, especially during the critical first thousand days of life. Given the challenges involved in infant care and rearing, parents often rely on pediatricians' professional support in a wide range of daily caregiving practices as diverse as complementary feeding, hygiene management, pacifier use, or sleep routines. Nevertheless, little attention has been devoted to the in vivo observation of how parents actually request advice on babies' everyday care, and how pediatricians attend to such requests. By adopting a conversation analysis approach to a corpus of 23 videorecorded Italian pediatric well-child visits, the article explores the different ways through which parents navigate the face-threatening activity of soliciting the pediatrician's advice on infants' everyday care and management. The analysis illustrates that parents overall display (different degrees of) prior knowledge and competence on the topics brought to the pediatrician's attention while, at the same time, acknowledging the pediatrician's expertise and professional role. In this way, I argue that parents display themselves as competent, knowledgeable, caring, and therefore "good parents". After discussing the results, in the concluding remarks I point to what seems to be a cultural change in parent-healthcare provider interactions.

Study protocol OKRA: orientation compass for the preparing, delivering and following up on breaking bad news conversations in paediatric oncology.

INTRODUCTION: In paediatric oncology, 'breaking bad news'-BBN-like cancer diagnosis is perceived as particularly challenging. Enabling a trialogue between children with their relatives and health professionals requires profound communication skills. Lacking the skills, experience or adequate support tools might result in negative consequences for both paediatric oncologists as BBN transmitters and BBN receivers as children with cancer and their relatives.In contrast to oncology for adults, multiperspective studies that explore BBN experience and specific support needs are rare, especially in Germany. Systematically developed and practically piloted support instruments, which address the specific needs of paediatric oncology, are missing. OBJECTIVE: To systematically design and mature in practice an orientation compass for preparing, delivering and following up on BBN conversations in paediatric oncology-so-called Orientierungskompass zur Übermittlung schwerwiegender Nachrichten in der Kinderonkologie (OKRA). METHODS AND ANALYSIS: OKRA is based on a QUAL-quant mixed study design, comprising two phases. Four groups will contribute (1) experts through personal experience (representatives for children receiving BBN and their parents), (2) medical care providers and representatives of national medical societies, (3) ambulant psychosocial/psychological support providers and (4) researchers. In phase 1, multiperspective knowledge is generated through a participatory group Delphi that involves in-depth interviews, focus group discussions and questionnaires. This process culminates in formulating theses for a high-quality BBN process (output phase 1). In phase 2, based on the theses, a pilot orientation compass is designed. Through iterative cycles with the participatory action research method, this instrument will be piloted in three paediatric oncological settings and consequently optimised. ETHICS AND DISSEMINATION: OKRA was approved on 19 September 2023 by the ethics committee of the Medical Faculty of the University of Cologne (No. 23-1187). After project completion, the OKRA compass will be distributed to multidisciplinary paediatric oncology teams throughout Germany. TRIAL REGISTRATION NUMBER: DRKS00031691.

Navigating vaccine hesitancy: Strategies and dynamics in healthcare professional-parent communication.

Understanding the communication dynamics between vaccine-hesitant parents and healthcare professionals (HCPs) is vital for addressing parent concerns and promoting informed decision-making. This paper focuses on strategies used by HCPs to communicate with vaccine-hesitant parents. It draws on empirical evidence generated as part of the international project VAX-TRUST. More specifically, 60 hours of observations were carried out in three different pediatric practices during vaccination-related visits, and 19 physicians and nurses were interviewed. We focused on the specific context of the Czech Republic, which represents a country with a mandatory vaccination system and in which children's immunization is the responsibility of pediatric general practitioners. We demonstrate that the dynamics between parents and HCPs and their willingness to invest time in the vaccination discussion are influenced by how HCPs categorize and label parents. Furthermore, we outline some of the different strategies HCPs employ while addressing concerns regarding vaccination. We identified two different strategies HCPs use to manage the fears of vaccine-hesitant parents. The first strategy focused on the communication of risks associated with vaccination (and lack thereof). HCPs used a variety of discursive practices to familiarize the unfamiliar risks of vaccine-preventable diseases (by mobilizing representations that are part of collective memory, incorporating personal experiences to materialize the presence of risk and the confidence in the safety of vaccines and by situating risk as embedded in everyday processes and integral to the uncertainty of the global world). The second strategy involved the conscious employment of medical procedures that may contribute to reducing vaccination fears.

Nurses' attitudes to family importance in nursing care: A two-sited cross-sectional study.

AIM: This study aimed to describe nurses' attitudes and beliefs towards the importance of family in nursing care and explore differences in nurses' attitudes and beliefs towards family-centered care between different healthcare institutions, such as community healthcare centers and hospitals. BACKGROUND: Family significantly affects the well-being and health of individuals. Therefore, nurses should support family engagement in nursing care. In recent years, family nursing research has emphasized the importance of teaching family nursing skills in continued education in healthcare institutions. Research has indicated that nurses who believe that illness concerns the family as a whole are more likely to involve the family in patient care. DESIGN: A cross-sectional research design was used. METHOD: Data were collected at one timepoint between March and September 2019 from 425 nurses working at the Primary Health Care Centers of the Capital Area (n=112) and in clinical settings at the University Hospital in Iceland (n=313). RESULTS: The main findings indicated that nurses working in the women-and-child division at the University Hospital reported significantly more positive attitudes towards family evolvement in patient care than nurses working in the intensive care or surgical units. For nurses working at healthcare centers, a significant difference was also found in the nurses' attitudes towards involving families in patient care. The nurses who were working in home care had significantly more positive attitudes when compared to those working in the infant and young children health promotion units. CONCLUSIONS: Greater collaboration is required between healthcare providers and families to improve the quality of care and health-related outcomes. Therefore, it is crucial to enhance nurses' knowledge about the importance of families during patient care. TWEETABLE ABSTRACT: This study aimed to describe nurses' attitudes and beliefs towards family care. Differences were found between nurse's attitudes by units but not by institutions.

Co-designing complex therapy interventions with parents as partners in the care of children with cerebral palsy: An Experience-based Co-design study in England.

BACKGROUND: Parents of children with hemiplegic cerebral palsy are increasingly involved in therapy intervention delivery. Enhancing the ways that parents are supported in delivery is key to optimising outcomes. This study aimed to refine an existing programme in England to better support parents partnering in their child's intervention delivery. METHODS AND PROCEDURES: Experience-based Co-design (EBCD) fostered collaboration between parents and therapists to identify shared improvement priorities and develop solutions. The study included eighteen interviews and sixteen co-design meetings involving twenty parents and eight therapists in total. Intervention development followed the MRC Framework for developing and evaluating complex interventions. OUTCOMES AND RESULTS: Themes from parent and therapist interviews informed priority setting for the co-design work. Three key shared priorities emerged a) accessing rehabilitation; b) fostering partnership and c) parent learning. Aligned with these priorities, three mixed parent and therapist co-design teams produced a) a parent booklet; an education outline for healthcare professionals; b) partnership principles; adaptations to intervention logbooks c) an online parent education session. CONCLUSIONS AND IMPLICATIONS: Engaging parents and therapists in a structured co-design process using EBCD yielded innovative interventions supporting parents in delivering therapy for children with hemiplegia. This collaborative approach is anticipated to enhance programme implementation and effectiveness.

Beyond the obstacles : diving into the heart of interventions promoting the involvement of relatives in intensive care unit / Au-delà des obstacles : plonger au cœur des interventions favorisant l'implication des proches aux soins intensifs.

Background: Involving family caregivers in direct care in the intensive care unit is increasingly recognized as part of best care practices. However, little is known about the factors that foster this involvement. Objective: The aim of this study was to identify the factors in the literature that promote or limit the involvement of family caregivers in direct care in adult intensive care units. Method: A rapid literature review was conducted in MEDLINE and CINAHL for English-and French-language articles published between 2010 and 2021. Results: 25 articles were selected (n=20 primary studies, n=5 literature syntheses). The results show a diversity of factors that influence the involvement of relatives in direct intensive care units. These factors can be grouped into four categories : relational, informal, clinical, and political. Conclusion: This review identifies the organizational, clinical and human issues relating to the involvement of family caregivers in direct care in order to propose recommendations to facilitate the implementation of this approach in the intensive care units.

Contexte: L'implication des proches aidants dans les soins directs à l'unité des soins intensifs est de plus en plus reconnue comme faisant partie des meilleures pratiques de soins. Toutefois, les facteurs permettant de favoriser cet engagement sont peu connus. Objectifs: Cette étude vise à identifier dans la littérature les facteurs favorables ou limitant l'implication des proches aidants dans les soins directs dans les unités des soins intensifs adultes, et à proposer des recommandations pour favoriser cette implication. Méthode: Une revue rapide des écrits a été réalisée dans MEDLINE et CINAHL afin d'étudier les articles publiés entre 2010 et 2021 en français ou en anglais. Résultats: Au total, 25 articles ont été retenus (n = 20 études primaires, n = 5 synthèses des connaissances). Conclusion: Cette revue permet d'identifier les enjeux organisationnels, cliniques et humains relatifs à l'implication des PA dans les soins directs afin de proposer des recommandations pour faciliter l'implantation de cette approche dans les unités des soins intensifs.

Supported Privacy: An Essential Principle for End-of-Life Care for Children and Families in the PICU.

Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this "Pediatric Critical Care Medicine Perspectives" piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: "Supported Privacy." In addition, we offer concrete recommendations to actualize "Supported Privacy" in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of "Supported Privacy" into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU.