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.

Should Providers Ask Family Members What They Want When Establishing Surrogate Decision-Making?

AbstractIn this piece I discuss optimal approaches that providers may take when pursuing surrogate decision-making. A potential critical problem here is some providers' approach differing from that of others. To the extent that this occurs, the results may be arbitrary, and the harm from this may be profound since this may affect, of course, even whether some of these patients will live or die. One factor possibly resulting in these differences is the moral weight providers place on what family members want when these outcomes differ from what they think patients would want. Providers now most commonly place greatest moral weight on following what patients would want to maximally respect their autonomy, but this view may clash with the view of others who see autonomy as more relational and thus based on prior and present social relations with others. Giving family members' wants more moral weight is a radical departure from what providers do now and may increase these differences. I discuss here the rationales for and against these competing choices.

Communicating with Parents About Therapeutic Hypothermia and Hypoxic Ischemic Encephalopathy: Integrating a Palliative Care Approach into Practice.

Parents of newborns with hypoxic ischemic encephalopathy (HIE) can face communication challenges in the neonatal intensive care unit. Both specialty palliative care and primary palliative care trained clinicians can assist parents as they navigate traumatic experiences and uncertain prognoses. Using evidence-based frameworks, the authors provide samples of how to communicate with parents and promote parent well-being across the care trajectory. The authors demonstrate how to involve parents in a shared decision-making process and give special consideration to the complexities of hospital discharge and the transition home. Sustained investment to guide the development of effective communication skills is crucial to support families of infants with HIE.

Nurses' Experiences of the Prerequisites for Implementing Family-Centered Care to Prevent Pediatric Delirium.

PURPOSE: The aim of this study was to describe nurses' experiences of the prerequisites for implementing family-centered care to prevent pediatric delirium. DESIGN: The research employed a qualitative, descriptive study design. METHODS: A total of 10 nurses working in the pediatric intensive care unit at 1 university hospital participated in the study. The quality data were collected using individual semistructured interviews, and the data were then analyzed by inductive content analysis. RESULTS: The prerequisites for implementing family-centered care to prevent delirium among pediatric patients consisted of 30 subcategories that were grouped into 11 generic categories. The generic categories were further grouped into 5 main categories: (1) an environment that supports family presence, (2) psychosocial support for the family, (3) individual family involvement, (4) family participation in shared decision-making, and (5) nurses' professional competence. CONCLUSIONS: According to the nurses' experiences, the implementation of a family-centered approach to preventing delirium in pediatric patients requires creating a supportive environment for families, providing psychosocial support, encouraging family involvement in decision-making, and ensuring that all nurses have the necessary skills.

Multicomponent family support intervention in intensive care units: statistical analysis plan for the cluster-randomized controlled FICUS trial.

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.

Increasing High-Value, Cost-Conscious Care Family Rounding Discussions Via an Educational Rounding Tool.

OBJECTIVES: Family-centered rounds (FCR) are an important time to engage in high-value, cost-conscious care (HV3C) discussions. However, research suggests HV3C conversations occur in a minority of FCRs. Best-practice support tools can improve provider performance, but no research has evaluated whether an HV3C-focused tool may increase pediatricians' HV3C FCR discussions. This study aimed to assess if an educational and practice-based HV3C Rounding Tool's introduction would increase providers' HV3C FCR performance and competence. METHODS: This study involved a hospitalist teaching service at a tertiary-care hospital. Evidence-based HV3C Rounding Tool and Quick Reference interventions were designed for use on FCRs, using a validated tool to measure baseline and postintervention HV3C performance. Underlying family, nursing presence/participation, and other factors' impacts upon HV3C performance were also explored. Anonymous baseline and postintervention surveys compared providers' perceived competence and comfort engaging families in HV3C discussions, as well as the tools' usefulness. RESULTS: Out of the 197 baseline and 157 intervention encounters recorded, the tools respectively increased from 3.8 to 5.8 HV3C performance measures addressed (P < .001), with 80% of performance measures showing significant improvement (P < .002). Aside from family presence for select performance measures, the tools had an independent, significant, positive effect upon HV3C performance. Users generally reported the tools as helpful and easy to use, noting significant increases in faculty role-modeling and trainee competence practicing HV3C. CONCLUSIONS: Introduction of HV3C Rounding and Quick Reference tools were generally perceived as helpful and beneficial, resulting in an increase of providers' HV3C discussions and care delivery during FCRs.

Research trends in nurse-parent partnership: A scoping review of the paediatric field in South Korea.

AIM: To analyse and describe the trends concerning nurse-parent partnerships in South Korean research, presenting their implications in paediatric care and guiding future directions for partnership research. DESIGN: A scoping review. METHODS: The scoping review was conducted according to the framework outlined by Arksey and O'Malley. This review method consists of five stages: (1) identifying a research question, (2) identifying relevant studies, (3) selecting relevant studies, (4) charting the data extraction and (5) collating, summarizing and reporting the results. The studies reviewed were searched from electronic databases. RESULTS: Thirty studies were analysed for general characteristics, type of research method and findings from quantitative and qualitative research. Among the quantitative research, factors associated with partnerships, such as self-efficacy, quality of care and coping, were commonly associated with nurse-parent partnerships regardless of parent-, child- and nurse-related factors. The intervention methods included active parental participation and the development of educational materials. In the review of qualitative research, parents and paediatric nurses experienced that even when both groups occupied the same environment simultaneously, a disparity existed between the paediatric nurses' and parents' perceptions of their partnership experiences. IMPLICATIONS FOR THE PROFESSION: Strengthening nurse-parent partnerships is crucial in improving health outcomes and quality of life for paediatric patients in South Korea. Effective collaboration, emphasizing mutual respect, effective communication, and shared decision-making, is essential in paediatric nursing care. This requires ongoing research, including both parents and a multidisciplinary approach to build supportive relationships across various age groups. Recognizing parents as key members of the care team, with valuable insights and contributions, enhances care quality. Additionally, enhancing paediatric nurses' self-efficacy, empowerment, and communication skills through continuous education is vital to improving parents' perceived quality of nursing. Partnership-centred practices not only boost care quality but also fortify the bond between healthcare providers and families, promoting better health outcomes. NO PATIENT OR PUBLIC CONTRIBUTION: This work did not incorporate patient or public contributions, as its methodology was centred on a scoping review approach.

Fathers' experiences of nurses' roles and care practices during their preterm infant's stay in the neonatal intensive care unit.

INTRODUCTION: Neonatal intensive care unit (NICU) nurses play a crucial role in providing infant care, as well as in bridging the communication gap with parents. AIM: Explore fathers' perceptions and interactions with nurses during their preterm infants' stay in a NICU. DESIGN: Qualitative study using ethnographic data collection techniques. METHODS: Twenty fathers of preterm infants were purposively sampled in a level III NICU in Italy. Data collection comprised 120 h of participant observation, 68 informal conversations, and 20 semi-structured interviews. Data analysis was performed using reflexive thematic analysis. RESULTS: Analysis revealed five primary themes: (i) communication and clarity about infants' health condition and progress, (ii) inclusiveness and guidance from nurses, (iii) fathers' satisfaction with nurses' support for mother, (iv) nurses' personal attention to the babies, and (v) nurses' varied personalities. CONCLUSION: Nurses are crucial in facilitating father-infant bonding in the NICU. Although the content of nurse communication is critical for fathers, the delivery style becomes especially relevant during their infant's hospitalization. Discrepancies in messages and guidance can negatively impact fatherly confidence and their ability to care for their preterm infants and support partners. Thus, training that emphasizes the recognition of the unique ways that fathers exhibit distress is crucial. RELEVANCE TO CLINICAL PRACTICE: Nurses play a critical role in shaping the fathers' experiences in NICU. Emphasizing clear communication and individualized care is vital. To strengthen father support in NICU settings, recommended approaches include regular training, holistic care, fostering inclusivity, emotional support, and improving bonding opportunities. REPORTING METHOD: Adherence to the COREQ guidelines.

Factors influencing job stress in pediatric nurses during the pandemic period: Focusing on fatigue, pediatric nurse-parent partnership.

PURPOSE: The purpose of this study was to identify the factors influencing pediatric nurses' job stress, including their level of fatigue and partnerships with the parents of patients. This investigation aimed to findings of this study may lead to the development of strategies to reduce pediatric nurse's job stress. DESIGN AND METHODS: Participants were recruited from pediatric, pediatric intensive care, and neonatal intensive care units across seven general hospitals. Eligibility requires a minimum of 6 months of experience in pediatric nursing. The sample size was determined using the G*power program, considering various variables, including age, marital status, presence of children, and work-related characteristics, leading to a final sample size of 135, adjusted for a 10% dropout rate. Data collection was conducted through self-report questionnaires, and analysis involved frequency, percentage, mean, standard deviation, t-tests, ANOVA, and stepwise multiple regression, using SPSS Statistics 27.0. RESULTS: This study confirmed a significant correlation between pediatric nurses' fatigue and job stress, with higher levels of fatigue associated with increased job stress. Stepwise regression analysis showed that fatigue and age were significant predictors of job stress among pediatric nurses, explaining 23% of the variance. However, detailed analysis showed that younger nurses had lower job stress scores compared to older nurses. This result suggests that more experienced nurses may experience higher job stress due to increased responsibilities and emotional burdens. PRACTICE IMPLICATIONS: This study identified the need for effective strategies to manage fatigue and reduce job stress among pediatric nurses during the COVID-19 pandemic. Younger nurses, particularly those under 25 and between 26 and 30 years old, experience lower job stress compared to older nurses. Comprehensive support systems should be developed, including workload management, emotional support, and programs to enhance partnerships between nurses and parents. These strategies can improve job satisfaction and the quality of care provided to young patients. Additionally, they ensure a more resilient and effective healthcare workforce during pandemics and similar crises.

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.

Communicating With Spanish-Speaking Families of Hospitalized Children With Medical Complexity.

BACKGROUND AND OBJECTIVES: Hospitalized families who use languages other than English (LOE) for care encounter unique communication challenges, as do children with medical complexity (CMC). We sought to better understand communication challenges and opportunities to improve care of families who use LOE from the perspectives of hospital staff and Spanish-speaking parents of CMC. METHODS: This qualitative project involved secondary analysis of transcripts from a study on family safety reporting at 2 quaternary care children's hospitals and additional primary data collection (interviews) of staff and parents. Bilingual researchers conducted audio-recorded, semistructured interviews with staff and Spanish-speaking parents of CMC during/after hospitalization. We professionally transcribed and translated interviews and developed, iteratively refined, and validated a codebook. Three independent researchers coded interviews using qualitative descriptive methodology and identified emerging themes through thematic analysis. RESULTS: We coded 49 interviews (13 parents, 11 physicians, 13 nurses, 6 allied health professionals, 6 leaders). Five themes emerged: (1) assumptions and bias regarding specific groups who use LOE for care, (2) importance of trust and relationships, (3) importance of language-concordant care, (4) workarounds to address communication challenges, and (5) the "double-edged" sword of technology. Participant-suggested strategies to improve communication included increasing interpreter access for parents and staff, optimizing technology use, and minimizing bias and assumptions through training. CONCLUSIONS: Parents of CMC and staff identified challenges and opportunities related to communicating with hospitalized families who use LOE for care. Solutions to improve communication and safety for these families should be attuned to needs of all parties involved.

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.

Parental impact during and after neonatal intensive care admission.

Parents play a pivotal role in neurodevelopmental outcomes of their children in the neonatal intensive care unit (NICU) and beyond. Integration of parents in clinical care and research is synergistic. Engaged parents yield more comprehensive clinical care and more robust and meaningful research products. Subsequently, successful clinical and research efforts improve outcomes for children. We review strategies for parental integration into NICU clinical care and research, including parental involvement in therapeutic interventions and neurodevelopmental care, and effective communication strategies for clinicians and researchers. We discuss challenges in neonatal trials and emphasize the need for building a culture of research, collaborative partnerships with patient advocacy organizations, and ongoing support beyond the NICU. Overall, we call for recognizing and fostering the impactful role of parents as teammates with clinicians and researchers in optimizing neurodevelopmental outcomes in the NICU and beyond.

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.

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.

[Optimal care at the end of life from the relatives' perspective: An interview study in two counties of Lower Saxony]. / Optimale Versorgung am Lebensende aus der Angehörigenperspektive ­ eine qualitative Interviewstudie in zwei niedersächsischen Landkreisen.

BACKGROUND: Established as health insurance benefit in 2007, Specialized Palliative Home Care (SPHC) has been continuously expanded. At the same time, health policy initiatives intended to promote general outpatient palliative care. In comparison to urban centers, the development of palliative care networks in rural areas appears to be more difficult. In addition, there is an increasing shortage of family doctors in primary care. Family members play a key role in the home care for seriously ill patients. This paper therefore investigated the experiences of relatives with the end-of-life (EoL) care for family members with life-limiting chronic diseases in more rural regions. The aim was to determine aspects that, from the relatives' point of view, are essential for optimizing EoL care. METHODS: Qualitative after-death interviews with relatives in two districts were conducted in the first six months of 2019, who were recruited by the deceased patients' family doctor. Relatives (age ≥18 years) of patients who died in 2018 were included. The interviews were digitally recorded, transcribed and analyzed using content analysis. RESULTS: In the first half of 2019, 28 after-death interviews were conducted with 30 relatives (77% female, age: 32 to 83 years) from rural (n=8) and urban communities (n=22) in two Lower Saxonian counties. They were mostly in a partnership or parent-child relationship with the deceased person. The central categories and needs that emerged in the analysis were: (1) communication about dying and death, (2) information and enabling, (3) support of and relief for relatives, and (4) continuity and cooperation of the services involved in EoL care. The results underline the fact that family caregivers in particular find open communication, information to provide them with the confidence to act, recognizing and responding to support needs and continuity in the course helpful in coping with EoL care situations. Access problems to specialist medical care, deficiencies in care coordination and bureaucratic hurdles in the provision of medical aids proved to be an additional burden. DISCUSSION: The results underline the importance of open communication and the integration of relatives into the care process for optimal care at the end of life. Close cooperation between the services involved and proactive support for relatives are essential, too, especially in rural areas where the challenges of accessing and coordinating care services are a major concern. CONCLUSION: The identification and communication of complex problems, the needs of patients and their relatives and possible barriers to accessing care services are prerequisites for the timely initiation of palliative care measures and support for family caregivers. In addition to needs-based care structures, the optimization of EoL care in home settings requires cooperation and networking between professional stakeholders.

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.