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.

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.

The Effects of 15 Golden Key Points to Increase the Family Consent Rate in Iran.

OBJECTIVES: In nations where organ donation is governed by the opt-in policy, the most crucial stage in the organ procurement process is the family approach and gaining the approval of families of decedents with brain death. In times of grief and sorrow, the ability of health care workers to communicate and have donation conversations is vital to the decision-making process of families and the subsequent consent rate. In this study, we investigated the effects of teaching important points to coordinators in the family approach and gaining consent of families for organ donation. MATERIALS AND METHODS: A new training program for Iranian coordinators was designed to increase the skills and knowledge of interviewers and increase the self-confidence of the coordinators. In the training program, 15 golden key points to have when meeting with families of brain dead decedents regarding organ donation consent were presented and discussed with participants. Three coordinating groups participated in this training program. The satisfaction rate of the families was assessed at comparable intervals (12 months for group 1, 6 months for group 2, and 3 months for group 3) before and after the training session to assess the continuity of the training impact. We used the Wilcoxon signed rank test for comparisons. RESULTS: The family consent rate was significantly different for all participants, before and after the 15 golden key points were presented, increasing from 50% to 62.5% (P = .037). In addition, participant sex (P = .051), previous training (P = .090), education (P = .068), and cooperation time (P = .008) had significant effects on family consent rate. CONCLUSIONS: Our training approach can increase the performance of coordinators in achieving family satisfaction.

Baby and Family-Centered Care in the Neonatal Intensive Care Unit: Changing Perspective.

The goal of baby and family-centered care in the neonatal intensive care unit (NICU) is to recognize the baby's needs exhibited through the baby's individual behavior and communication and support parent education, engagement, and interaction with the baby to build a nurturing relationship. Health care providers and caregivers must guide rather than control the role of the parents from birth through NICU care, transition to home, and continuing care at home. Parents are health care team members, primary caregivers, and shared decision-makers in caring for their babies.

Maintaining Parental Roles During Neonatal End-of-Life Care: A Review of the Literature.

Parents who are experiencing neonatal death need support in promoting and maintaining their parental role. This includes parenting their infant during end-of-life. Bedside nurses should partner with parents to help them maintain the parent-infant relationship by establishing effective communication, building trust, and promoting the parental role. By doing so, parents will utilize these experiences to process their grief through meaning-making.

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. METHODS: Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. RESULTS: A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. CONCLUSION: Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

Optimizing Family Presence through Medical Education.

AbstractMany family members are wary of asking whether they can be present in the intensive care unit (ICU) while patients are receiving care. However, the opportunity to be present can be profoundly beneficial, especially to family members as they approach the grieving process. In the long run, this may decrease emotional complications such as post-traumatic stress disorder (PTSD) and complex grief. Family presence may also be profoundly important to patients, who may find comfort in the presence of their loved ones. Optimizing the needs of distressed families remains a controversial topic because it may distract physicians from providing needed medical care. Both parties may benefit maximally, however, through proactive training and early education during medical school, as this article will outline. Family members who may want to visit but are unable to be present in person may also benefit through virtual telehealth visits. Finally, we acknowledge specific cases that may pose ethically difficult dilemmas for ICU providers. Solutions that may be optimal in these situations will be suggested.

"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities.

PURPOSE: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pediatric serious illness care and facilitate the development of potential improvements. Our aim was to explore parents' perspectives of their children's health care for serious illness from Somali, Hmong, and Latin-American communities in Minnesota. METHODS: We conducted a qualitative study with focus groups and individual interviews using immersion-crystallization data analysis with a community-based participatory research approach. RESULTS: Twenty-six parents of children with serious illness participated (8 Somali, 10 Hmong, and 8 Latin-American). Parents desired 2-way trusting and respectful relationships with medical staff. Three themes supported this trust, based on parents' experiences with challenging and supportive health care: (1) Informed understanding allows parents to understand and be prepared for their child's medical care; (2) Compassionate interactions with staff allow parents to feel their children are cared for; (3) Respected parental advocacy allows parents to feel their wisdom is heard. Effective communication is 1 key to improving understanding, expressing compassion, and partnering with parents, including quality medical interpretation for low-English proficient parents. CONCLUSIONS: Parents of children with serious illness from Somali, Hmong, and Latin-American communities shared a desire for improved relationships with staff and improved health care processes. Processes that enhance communication, support, and connection, including individual and system-level interventions driven by community voices, hold the potential for reducing health disparities in pediatric serious illness.

Grasping the meaning of perinatal palliative care for the multiprofessional team.

OBJECTIVE: To grasp the meaning of perinatal palliative care for the multidisciplinary team. METHODS: This is a qualitative study guided by content analysis. The study included 56 health professionals working in maternal and child units of a public university hospital. A semi-structured interview was conducted, which was recorded and subsequently fully transcribed. The collection took place from June 2018 to May 2019. Data were entered and exported to Atlas ti: The Qualitative Date Analysis & Research Software, version 23.1.1.0. RESULTS: Four thematic categories emerged from the data analysis: palliative care and eligible public in the view of professionals; communication between family and team in decision-making; assistance in palliative care; humanized care. CONCLUSIONS: The professionals think of palliative care in Perinatology in a similar way and perceive the difficulties of communication with the family and decision-making. They agree that it is necessary to provide greater support to the family, and to provide comfort measures, either for the non-viable fetus or for the baby eligible for palliative care.

Enhancing NICU Care and Communication: Perspectives of Moderately Preterm Infant Parents.

BACKGROUND: Moderately preterm infants (MPTI) comprise a large proportion of NICU admissions and are an understudied population. The unique experience of families with MPTIs has yet to be examined in the literature. Describing MPTI parent needs and preferences may inform interventions to improve care and outcomes for this population. METHODS: Semistructured qualitative interviews were performed with English-speaking birth parents of infants born between 32 and 34 weeks gestation to describe their NICU experience and identify areas for improvement specifically surrounding care team inclusion, education, discharge, and communication. Interviews were recorded, transcribed, and analyzed using directed content analysis. Enrollment ceased when the data reached thematic saturation. RESULTS: Sixteen birth parents participated. Four themes emerged around parent-medical team connectedness, parental confusion, discharge readiness, and the desire for a use of a mix of in-person and electronic communication methods (e-mail, texting, apps, etc) for communication. MPTI parents valued a strong connection with the medical team; however, they described a lack of knowledge regarding the reasons for admission and ongoing management. Near discharge, parents desired more information regarding feeding, reflux, and breathing patterns. Parents preferred in-person discussions but described a role for electronic methods to improve their understanding of their infant and discharge readiness. CONCLUSIONS: From the MPTI parent perspective, clinicians can focus improvement efforts on communication, specifically around reasons for admission, discharge planning, and anticipatory guidance. These results may serve as a foundation for initiatives to improve the MPTI parent experience and potentially parent and MPTI outcomes.

Increased family psychosocial focus during children's developmental assessments: a study of parents' views.

BACKGROUND: Family psychosocial challenges during the early years of a child's life are associated with later mental and physical health problems for the child. An increased psychosocial focus on parents in routine child developmental assessments may therefore be justified. METHODS: Participants in this qualitative study included 11 mothers and one parental couple (mother and father) with children aged 9-23 months. Participants were recruited to Project Family Wellbeing through their general practice in Denmark. Twelve interviews were conducted, transcribed and analysed with a deductive approach. The topic guide drew on the core components of the Health Belief Model, which also served as a framework for the coding that was conducted using thematic analysis. RESULTS: Results are presented in four themes and 11 subthemes in total. Parents welcome discussion of their psychosocial circumstances during their child's developmental assessments. Clinicians' initiatives to address psychosocial challenges and alignment of parents' and clinicians' expectations may be required to allow this discussion. A flowing conversation, an open communication style and a trustful relationship facilitate psychosocial discussion. Barriers included short consultation time, concerns about how information was used and when parents found specific psychosocial aspects stigmatising or irrelevant to discuss. CONCLUSION: Enquiry about the family's psychosocial circumstances in routine developmental assessments is acceptable among parents. Alignment of clinical and parental expectations of developmental assessments could facilitate the process. Future research should examine the predictive validity of the various components of developmental assessments. TRIAL REGISTRATION: This is a qualitative study. The study participants are part of the cohort from Project Family Wellbeing (FamilieTrivsel). The project's trial registry number: NCT04129359. Registered October 16th 2019.

Clinicians navigating moral accountability when discussing parental behaviors in the care of the child in the hospital.

OBJECTIVE: The purpose of this study was to explore how moral accountability is navigated when clinicians talk about parental behaviors to support the health of the hospitalized child. METHODS: We conducted a secondary data analysis of 74 conversations during daily rounds video recorded as part of a randomized controlled trial of an intervention to advance family-centered rounds in one children's hospital. Conversations involving children under the age 18 who were cared for by a pediatric hospitalist service, pulmonary service, or hematology/oncology service were recorded. We used conversation analysis to analyze sequences in which physicians engaged in talk that had implications for parent behavior. RESULTS: Two phenomena were apparent in how physicians and parents navigated moral accountability. First, physicians avoided or delayed parental agency in their references to parent behaviors. Second, parents demonstrated and clinicians reassured parental competence of parents caring for their children. CONCLUSION: Physicians appeared to be oriented toward the potential moral implications of asking about parental behavior. PRACTICE IMPLICATIONS: Avoiding attributions of agency and moral accountability as well as providing reassurance for the parents' competence may be useful for clinicians to maintain a good relationship with the parents of children in their care in the hospital setting.

The processes and outcomes related to 'family-centred care' in neuromotor and functional rehabilitation contexts for children with cerebral palsy: A scoping review.

OBJECTIVE: The aim of this study is to identify the main processes and outcomes related to family-centred care (FCC) in neuromotor and functional rehabilitation of preschool children with cerebral palsy (CP). BACKGROUND: FCC is considered a reference for best practices in child rehabilitation. CP is the most common cause of physical disability in childhood with repercussions on functionality. There is a gap in knowledge of the practical principles of FCC, and it is necessary to develop a reference model for the practice of child rehabilitation professionals. METHODS: In this scoping review, the main databases selected were as follows: LILACS; Pubmed; Embase; The Cochrane Library; CINAHL (EBSCO); Scopus; Web of Science; PEDro (Physiotherapy Evidence Database); Open Gray and other banks of thesis. The terms combined in the search strategy were as follows: 'Family-centered', 'Family-centred' and 'CP'. Inclusion criteria are as follows: studies on preschool-aged children with CP, undergoing family-centred functional therapeutic interventions (FCFTI) with outcomes on bodily structures and functions and/or activities and/or participation. RESULTS: The main participatory care methods identified were home intervention, environmental enrichment, collaborative realistic goal setting, planning of home-based activities and routine, child assessment feedback, family education/training, family coaching, encouraging discussion, observation of therapist and supervised practice. The main relational care qualities identified were as follows: respect, active listening, treat parents as equals, clear language, respect parents' ability to collaborate, demonstrate genuine care for the family, appreciate parents' knowledge and skills, demonstrate competence, experience and commitment. The main outcomes identified in children were improvement in motor and cognitive function and the child's functional ability. The main parentaloutcomes identified were empowerment, feeling of competence, self-confidence, motivation and engagement. CONCLUSION: The main differences in FCFTI programs refer to the parental education/guidance component and the amount of intervention carried out by parents. It is possible that the elements chosen by the therapist in a FCFTI depend on characteristics of the child and caregivers.

How to approach patients and families at the end of life.

Healthcare practitioners are regularly faced with treating patients at the end of their life, and this can be very daunting. This article hopes to help the practitioner have an approach to managing end-of-life care that makes it less distressing. The symptoms at the end-of-life include delirium and/or agitation, breathing changes, skin changes, sleeping more, decrease in need for food and drink, incontinence, and increased secretions. These symptoms are discussed and practical ways of management are given. The article further discusses how to approach the difficult conversation with the family and gives guidance as to what needs to be discussed. A number of tips are discussed on how to prepare the family to handle a death at home. It is essential to look at coping mechanisms and selfcare for practitioners dealing with end-of-life care as the death of a patient not only affects the family but also the practitioner.

A Qualitative Intervention Evaluation of Neonatal Virtual Family-Centered Rounds.

OBJECTIVE: To conduct an implementation evaluation of the virtual family-centered rounds (FCR) intervention by exploring the perceptions and experiences of parents and care team providers. METHODS: We conducted a qualitative descriptive study using a thematic analysis of unobtrusive observations of rounding encounters and semi-structured interviews with the parents of discharged infants and members of the neonatal care team. Eligible participants had used virtual FCR at least once. Five research team members independently performed focused coding and memo writing of transcripts and observation fieldnotes. The team met weekly to compare and refine codes, update the interview guide, develop tentative categories, and discuss the theoretical direction. RESULTS: We conducted 406 minutes of unobtrusive observations and 21 interviews with parents, physicians, neonatal nurse practitioners, bedside nurses, dieticians, and pharmacists. Three themes and 13 subthemes emerged from the analysis: (1) virtual FCR improved perceived care delivery and clinical outcomes through increased opportunities for parent engagement, (2) the acceptance of virtual FCR by providers grew over time despite the persistent presence of technical challenges, and (3) the implementation of virtual FCR should be standardized and delivered by the care team to enhance usability, effectiveness, and sustainability. CONCLUSIONS: Virtual FCR is perceived by NICU parents and care team providers to be a valuable intervention that can enhance family centered care. The identified virtual FCR implementation strategies should be tested in further studies.

Percepção de mães sobre a visitação aberta na unidade de terapia intensiva neonatal / Mothers' perception of open visitation in the neonatal intensive care unit / Percepción de las madres sobre las visitas abiertas en la unidad de cuidados intensivos neonatales

Objetivo: compreender a percepção de mães sobre a visitação aberta na unidade de terapia intensiva neonatal. Métodos: estudo descritivo, qualitativo, realizado por meio de entrevista semiestruturada e individualizada, em uma maternidade pública situada no interior de São Paulo, Brasil, em 2019. A amostra foi definida pelo método de saturação de dados e constou de 14 mães. Os dados foram submetidos a Análise de Conteúdo Temática. Resultados: elencaram-se duas categorias: evidenciando os benefícios da visitação aberta e desafios a serem superados. Os benefícios incluíram a satisfação em permanecer com o filho, participar dos cuidados, fortalecer o vínculo maternal, acompanhar a evolução do bebê, evidenciar a qualidade do cuidado e o envolvimento afetivo, redução de sentimentos negativos e visitação do pai no período noturno. Em contrapartida, os desafios incluíram a impossibilidade de permanecer com o filho, estar presente somente em horários pré-estabelecidos para receber informações de médicos, prioriza-las em relação as fornecidas pela enfermagem, receber informações parciais, ter receio em expressar as dúvidas e vivenciar sentimentos negativos. Conclusão: os achados deste estudo fornecem subsídios para que a equipe de saúde e os gestores promovam a adesão de mães à visitação aberta em unidades de terapia intensiva neonatais. (AU)

Objective: understand the perception of mothers about open visitation in the neonatal intensive care unit. Methods: descriptive, qualitative study, carried out through semi-structured and individualized interviews, in a public maternity hospital located in the interior of São Paulo, Brazil, in 2019. The sample was defined by the data saturation method and consisted of 14 mothers. Data were submitted to Thematic Content Analysis. Results: two categories were listed: showing the benefits of open visitation and challenges to be overcome. The benefits included the satisfaction of staying with the child, participating in care, strengthening the maternal bond, monitoring the baby's evolution, showing the quality of care and affective involvement, reducing negative feelings and visiting the father at night. On the other hand, the challenges included the impossibility of staying with the child, being present only at preestablished times to receive information from doctors, prioritizing it in relation to that provided by nurses, receiving partial information, being afraid to express doubts and experience negative feelings. Conclusion: the findings of this study provide support for the health team and managers to promote the adherence of mothers to open visitation in neonatal intensive care units. (AU)

Objetivo: comprender la percepción de las madres sobre la visita abierta en la unidad de cuidados intensivos neonatales. Métodos: estudio descriptivo, cualitativo, realizado a través de entrevistas semiestructuradas e individualizadas, en una maternidad pública ubicada en el interior de São Paulo, Brasil, en 2019. La muestra fue definida por el método de saturación de datos y estuvo conformada por 14 madres. Los datos se enviaron a Análisis de contenido temático. Resultados: se enumeraron dos categorías: mostrando los beneficios de la visita abierta y los desafíos a superar. Los beneficios incluyeron la satisfacción de quedarse con el niño, participar en los cuidados, fortalecer el vínculo materno, monitorear la evolución del bebé, mostrar la calidad del cuidado y el involucramiento afectivo, reducir los sentimientos negativos y visitar al padre por la noche. Por otro lado, los desafíos incluían la imposibilidad de quedarse con el niño, estar presente solo en horarios preestablecidos para recibir información de los médicos, priorizarla en relación a la brindada por enfermeras, recibir información parcial, tener miedo a expresar dudas y experimentar sentimientos negativos. Conclusión: los hallazgos de este estudio brindan apoyo al equipo de salud y gerentes para promover la adherencia de las madres a la visita abierta en las unidades de cuidados intensivos neonatales. básico sobre las conductas frente a los accidentes, a pesar de desconocieren el flujo de atención del servicio. (AU)

Improving Parental Knowledge of Medically Complex Neonates Through Scheduled Conferences.

Reports of parental dissatisfaction from incomplete or inconsistent information led to a quality improvement (QI) project to establish planned family conferences at 10 days and 1 month of life, for 50% of the medically complex neonates admitted to a neonatal intensive care unit within 1 year. A QI team instituted a system in which social workers scheduled family conferences and a neonatologist conducted the conferences. Team members tracked measures using statistical process control charts over 21 months. The QI team scheduled conferences for greater than 80% of eligible families, with an 86% completion rate on days 10 and 30, exceeding project goals of 50%. The majority of the families surveyed were satisfied with the meetings. Only 2% of parents surveyed found meetings burdensome, compared to 14% of physicians. A sustainable method for scheduling meetings and preparation for conferences, including the use of a template led to success.