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.

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.

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.

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.

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.

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.

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)

Supporting parents while their child is receiving neurocritical care.

The post-intensive care syndrome (PICS) concept whereby the ICU experience of the patient as well as their family can have long-term deleterious health outcomes in both the patient and the family provides a rationale and impetus for modifying the ICU experience for the parents of patients receiving pediatric neurocritical care. This article uses the PICS framework to provide insight to that parental experience. Included are the words of parents who tell what they felt and what they most needed from their children's doctors while their children were receiving neurocritical care. Based on their and many other ICU parents' advice and the PICS research, we identify a short list of specific steps the medical team can take immediately to support these parents.

[Relatives after a stay on the intensive care unit: a care gap to be closed]. / Angehörige nach Aufenthalt auf der Intensivstation: Eine Versorgungslücke ist zu schließen.

Structures for the care of relatives after a stay on the intensive care unit are present in principle, but no systematic interfaces between the different types of care and the care sectors exists. Therefore, in a first step, the needs of relatives during intensive care treatment should be continuously assessed and addressed as early as possible. Furthermore, proactive provision of information regarding aftercare services is necessary throughout the entire course of hospitalization and rehabilitation, but also in the phase of general practitioner care. The patient's hospital discharge letter with a detailed social history can serve information transfer at the interfaces.

Parents' and neonatal healthcare professionals' views on barriers and facilitators to parental presence in the neonatal unit: a qualitative study.

BACKGROUND: Parent and infant separation in the neonatal unit is associated with adverse health outcomes. Family-integrated care has several advantages and the potential to reduce these adverse outcomes but requires parental presence. This study aimed to explore the views of parents and neonatal healthcare professionals (nHCPs) on barriers and facilitators to parental presence in a Swiss neonatal unit and to identify possible differences between nHCPs and parents, and between mothers and fathers. METHODS: Data were collected through semi-structured interviews with parents and focus group discussions with nHCPs. Inductive content analysis was used to identify barriers and facilitators to parental presence in the neonatal unit. RESULTS: Twenty parents (10 mothers and 10 fathers) and 21 nHCPs (10 nurses and 11 physicians) participated in the study. Parents and nHCPs experienced barriers and facilitators related to: (1) Structural factors of the institution, such as infrastructure or travel and distance to the neonatal unit. (2) Organization and time management of parental presence, daily activities, and work. (3) Resources, which include factors related to the legal situation, support services, family, and friends. (4) Physical and psychological aspects, such as pain, which mainly affected mothers, and aspects of emotional distress, which affected both parents. Self-care was an important physical and psychological facilitator. (5) Parent-professional interaction. Parental presence was influenced by communication, relationship, and interaction in infant care; and (6) Cultural aspects and language. Some perspectives differed between mothers and fathers, while the overall views of parents and nHCPs provided complementary rather than conflicting insights. Using visit plans to support the organization, educating nHCPs in knowledge skills and available resources to improve encouragement and information to parents, strengthening parent self-care, and improving nHCPs' attitudes towards parental presence were seen as possible improvements. CONCLUSIONS: Multifactorial barriers and facilitators determine parental presence and experience in the neonatal unit. Parents and nHCPs made specific recommendations to improve parental presence.

A randomised controlled trial of a nurse facilitator to promote communication for family members of critically ill patients.

PURPOSE: Suboptimal communication with clinicians, fragmented care and failure to align with patients' preferences are determinants of post intensive care unit (ICU) burden in family members. Our aim was to evaluate the impact of a nurse facilitator on family psychological burden. METHODS: We carried out a randomised controlled trial in five ICUs in France comparing standard communication by ICU clinicians to additional communication and support by nurse facilitators. We included patients > 18 years, with expected ICU length of stay > 2 days, chronic life-limiting illness, and their family members. Facilitators were trained to help families to secure care in line with patient's goals, beginning in ICU and continuing for 3 months. Assessments were made at baseline and 1, 3 and 6 months post-randomisation. Primary outcome was the evolution of family symptoms of depression over 6 months using a linear mixed effects model on the depression subscale of the Hospital Anxiety and Depression Scale (HADS). Secondary outcomes included HADS-Anxiety, Impact of Event Scale-6, goal-concordant care and experience of serious illness (QUAL-E). RESULTS: 385 patients and family members were enrolled. Follow-up at 1-, 3- and 6-month was completed by 284 (74%), 264 (68.6%) and 260 (67.5%) family members respectively. The intervention was associated with significantly more formal meetings between the ICU team and the family (1 [1-3] vs 2 [1-4]; p < 0.001). There was no significant difference between the intervention and control groups in evolution of symptoms of depression over 6 months (p = 0.91), nor in symptoms of depression at 6 months [0.53 95% CI (- 0.48; 1.55)]. There were no significant differences in secondary outcomes. CONCLUSION: This study does not support the use of facilitators for family members of ICU patients.

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.

Open Notes Experiences of Parents in the Pediatric ICU.

OBJECTIVE: We examined how parents experience and navigate open access to clinical notes ("open notes") in their child's electronic health record and explored their interactions with clinicians during an ICU admission. METHODS: We performed a qualitative analysis using semistructured interviews of English-speaking parents who accessed their child's clinical notes during a pediatric ICU (general or cardiac) admission. We included patient-parent dyads with an ICU admission ≥48 hours between April 2021 and December 2022, note access by proxy timestamp during the ICU course, and either patient age <12 years or incapacitated adolescent ages 12 to 21 years. Purposive sampling was based on sociodemographic and clinical characteristics. Phone interviews were audio-recorded, transcribed, and analyzed using inductive thematic codebook analysis. RESULTS: We interviewed 20 parents and identified 2 thematic categories, outcomes and interactions, in parents accessing clinical notes. Themes of outcomes included applied benefits, psychosocial and emotional value, and negative consequences. Themes of interactions included practical limitations and parental approach and appraisal. The ICU context and power dynamics were a meta-theme, influencing multiple themes. All parents reported positive qualities of note access despite negative consequences related to content, language, burdens, and lack of support. Parents suggested practice and design improvements surrounding open note access. CONCLUSIONS: Parental experiences with open notes reveal new, unaddressed considerations for documentation access, practices, and purpose. Parents leverage open notes by negotiating between the power dynamics in the ICU and the uncertain boundaries of their role and authority in the electronic health record.

Correlates of perceived shared decision making with parents of children with special healthcare needs: Findings from the PART-CHILD study.

OBJECTIVE: To assess the extent of perceived shared decision making (SDM) with parents of pediatric patients and to examine its association with characteristics of patients, professionals, and healthcare facilities. METHODS: Parents of pediatric patients (n = 4383) were recruited in 15 social pediatric centers in Germany and provided information on perceived SDM (binary CollaboRATEpediatric score: optimal versus suboptimal extent of SDM), child age and sex, type of impairment, appointment, and healthcare professional present at the appointment. Organizational characteristics were assessed in a cross-sectional survey of staff at the study sites. RESULTS: Overall, 58.4% of parents reported an optimal extent of SDM. The optimal extent of SDM was more likely reported by parents of girls (OR=1.27, p < 0.001) and children with physical (as opposed to cognitive and combined) impairments (OR=1.30, p = 0.006), and after appointments attended by allied health professionals (OR=1.28, p = 0.004). In addition, parents in facilities receiving financing in addition to compensation by statutory health insurance funds were less likely to report an optimal extent of perceived SDM. CONCLUSION: While SDM with parents was mostly related to individual characteristics of children and professionals at appointments, organizational characteristics seemed less relevant in our study. PRACTICE IMPLICATIONS: Staff should be made aware of lower SDM with parents of boys, older children, and those with cognitive impairments, and trained to improve the SDM in these groups.

The presence of family during resuscitation in critical care settings: Nurses perspectives.

INTRODUCTION: Family presence during resuscitation (FPDR) is now an accepted practice in many western countries as research proven its positive impact on patient, family and also health care providers. In Malaysia, it is not known whether nurses in critical care settings agrees on family members' presence during the resuscitation process. This study aims to determine the perspectives of nurses toward family presence during resuscitation in critical care settings at Hospital Universiti Sains Malaysia. This study specifically looked at the risk and benefits perceived by nurses related to family presence during resuscitation, the self-confidence perceived by nurses related to family presence during resuscitation, and the correlation between nurses' perception of risk and benefits with self-confidence related to family presence during resuscitation. MATERIALS AND METHODS: A cross-sectional study was conducted using a self-administered questionnaire entitled the Family Presence Risk-Benefit Scale and Family Presence Self-Confidence Scale. Purposive sampling method was used to include 130 nurses working in eight Intensive Care Units at Hospital Universiti Sains Malaysia. Descriptive statistics and Pearson's Correlation test were used to analyse the variables of FPDR. RESULTS: Findings revealed that nurses in the critical care setting perceived low risk-benefit and low self-confident with regards to family presence during resuscitation. Pearson correlation analysis showed no correlation between perceptions of risk-benefits and self-confidence among critical care nurses (r = -0.016). CONCLUSION: Relatively, nurses perceived that family presence during resuscitation would place high risk and low benefit to the family members. Thus there is a need for education, training, and guideline to enrich the concept of FPDR and its implementation.

A narrative inquiry into the communication experiences of mothers caring for children with cancer in Jordan.

BACKGROUND: This study aims to investigate the parenting experiences of mothers who care for children with cancer in Jordan and specifically focuses on the communication experiences of mothers who care for children with cancer. METHODOLOGY: A qualitative research design employing a narrative inquiry methodology was adopted; it employed the implementation of twenty semi-structured interviews with the mothers of children with cancer recruited from one pediatric hospital located in Amman, Jordan. FINDINGS: The findings of this study reveal that the majority of mothers attempted to conceal or delay any discussion regarding the diagnosis with their child, particularly during the immediate post-diagnosis period. Additionally, the mothers expressed that their relationships with the parents of children diagnosed with the same illness contain positive and negative aspects. Finally, most mothers participating in this study praised the role of hope in helping them cope with the challenging health condition of their children. CONCLUSIONS: The findings of this study reveal that mothers would withhold diagnostic information from their children for several reasons: firstly, they wished to safeguard their children from feelings of distress; secondly, they perceived that their children were too immature to fully comprehend the seriousness of their diagnosis; and, finally, they desired to protect their children from unnecessary fear and negative emotions. PRACTICAL IMPLICATIONS: Pediatric cancer care requires effective communication between physicians, pediatric nurses, caregivers, and children; clear and accurate communication between healthcare providers and parents of children with cancer ensures that they fully understand the diagnosis and can make values-based decisions.

Educational programmes for paediatric healthcare professionals in patient- and family-centred care. A scoping review.

To identify and describe educational programmes in patient- and family-centred care for paediatric healthcare professionals. This scoping review was conducted and reported according to the JBI Manual for Evidence Synthesis and the PRISMA guideline. The databases searched included MEDLINE (PubMed), PsycINFO, CINAHL, Scopus, Cochrane, and Embase. Inclusion criteria were experimental, observational and qualitative studies about educational programmes on patient- and family-centred care for paediatric healthcare professionals. Exclusion criteria were reviews and non-peer-reviewed literature. Two reviewers independently screened and extracted the data using Covidence. Of the 13922 records identified, 49 articles met the inclusion criteria. There was a large variety of educational programmes, half of which were interdisciplinary, that mainly targeted nurses and doctors. The median number of participants was 51 (range 7 to 1411). The predominant target population was children with chronic disabilities and neonatal intensive care units, and only one programme specifically targeted adolescents. The median duration was one day (range 5 min to 3.5 years). Development of competencies was the most common objective. We identified 12 different educational content areas. Content mainly focused on communication and relational competencies, including partnership, which involved shared decision-making, mutual agenda setting, and negotiation of a plan. Many kinds of educational strategies were found but experiential learning through simulation and roleplay was used most.   Conclusion: A large variety of educational programmes in paediatric patient- and family-centred care exist. Educational content mainly focused on communication and relational competencies. Experiential learning including roleplay and simulation was the most used educational strategy. What is Known: • Delivery of patient- and family-centred care improves parental satisfaction of care but requires clinicians have a certain attitude towards involving the child and parents in a healthcare partnership as well as advanced triadic communication skills. Little is known about how this attitude, and more broadly, patient- and family-centred care, can be facilitated through education and training. What is New: • This scoping review found a wide array of programmes.. Workshops with simulation or roleplay was the most frequent educational strategy. The programmes, which typically targeted nurses and doctors, chiefly focused on basic and advanced communication and relational competencies, including partnership, which involved shared decision-making and negotiation of plans.