Challenges in establishing optimal pediatric palliative care at the university hospital in Slovenia.

The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting points for the establishment of accessible PPC with early involvement of patients in a tertiary-level children's hospital. An intervention, presentation, and discussion on PPC were offered by the hospital PPC team to all employees in the hospital. A total of 237 participants (physicians 30.4%, nurses 49.4%, psychologists 8.4%, and others) completed a questionnaire before and after the intervention. The personnel's knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. The results were analyzed using Pandas and SciPy libraries in Python. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. However, the self-assessment of their ability to perform PPC did not increase. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC.Conclusions: More education and practical work tailored to the different professional profiles are needed, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.

Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks.

BACKGROUND: Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such measures, one for children and young people (0-18 years) (CYP) with a life-threatening or life-shortening condition (LT/LSC), and one for their parents. It comprised parallel scoping reviews of qualitative evidence on the elements of health service delivery and care that matter to, or impact on, CYP (Review 1) and parents (Review 2). METHODS: Medline and PsychINFO (1/1/2010 - 11/8/2020) and CINAHL Complete (1/1/2010 - 4/7/2020) were searched and records identified screened against inclusion criteria. A thematic approach was used to manage and analyse relevant data, informed by existing understandings of patient/family experiences as comprising aspects of staff's attributes, their actions and behaviours, and organisational features. The objective was to identity the data discrete elements of health service delivery and care which matter to, or impact on, CYP or parents which, when organised under higher order conceptual domains, created separate conceptual frameworks. RESULTS: 18,531 records were identified. Sparsity of data on community-based services meant the reviews focused only on hospital-based (inpatient and outpatient) experiences. 53 studies were included in Review 1 and 64 in Review 2. For Review 1 (CYP), 36 discrete elements of healthcare experience were identified and organized under 8 higher order domains (e.g. staff's empathetic qualities; information-sharing/decision making; resources for socializing/play). In Review 2 (parents), 55 elements were identified and organized under 9 higher order domains. Some domains were similar to those identified in Review 1 (e.g. professionalism; information-sharing/decision-making), others were unique (e.g. supporting parenting; access to additional support). CONCLUSIONS: Multiple and wide-ranging aspects of the way hospital healthcare is organized and delivered matters to and impacts on CYP with LT/LSCs, and their parents. The aspects that matter differ between CYP and parents, highlighting the importance of measuring and understanding CYP and parent experience seperately. These findings are key to the development of patient/parent experience measures for this patient population and the resultant conceptual frameworks have potential application in service development.

The Sensory Experience of Waiting for Parents of Children Awaiting Transplant: A Narrative Ethnography.

Despite the senses being a valuable source of knowledge, little research has explored the sensory process of medical experiences. This narrative ethnographic study investigated how the senses shaped parents' experiences of waiting for their child to receive a solid organ, stem cell, or bone marrow transplant. Six parents from four different families primarily participated in sensory interviews as well as observations that explored the question: How do parents experience waiting using the five senses? Our narrative analysis suggested that parents' bodies stored sense memories, and they re-experienced stories of waiting through the senses and 'felt realities'. In addition, the senses transported families back to the emotional experience of waiting, which highlighted the longevity of waiting after receiving a transplant. We discuss how the senses provide important information about the body, waiting experiences, and the environmental contexts that mediate waiting. Findings contribute to theoretical and methodological work exploring how bodies are implicated in producing narratives.

A qualitative phenomenological study of nurses' experiences in caring for infants and children with life-limiting and life-threatening conditions.

PURPOSE: To understand the experience of nurses caring for infants and children with life limiting and life-threatening conditions. DESIGN AND METHODS: A qualitative phenomenological study was conducted, collecting data through deep interviews. Sample included twenty-seven nurses working in paediatric and neonatal intensive care units. RESULTS: Four themes emerged: suffering, being there, protect yourself and support. The experience of caring for children with limiting and life-threatening conditions affects nurses positively, with personal and professional gratification, but also negatively, as it leads to the development of compartmentalization, avoidance, and high levels of stress. CONCLUSIONS: The organization should make resources available to help nurses build resilience, improve emotional intelligence, and process experiences and emotions, thereby bringing benefits and improvements in infant and childcare. PRACTICE IMPLICATIONS: Comparison between colleagues is one of the most effective tools for supporting each other. Dedicated times and spaces to be able to carry out the debriefings managed by the nurses themselves, guided and mediated by an expert figure, such as a psychologist or a trainer, would be recommended.

Challenges and coping between parents in shared decision-making for children with complex, life-threatening conditions: A qualitative content analysis.

BACKGROUND & PURPOSE: Relatively little is known about the parents' challenges and coping in making decisions for children with complex, life-threatening conditions. Therefore, this secondary analysis aimed to explore the challenges and coping between parents while navigating their decision-making by focusing on their interpersonal relationship. DESIGN & METHOD: Data from 38 interviews with parent couples of 20 infants diagnosed with congenital heart disease or receiving hematopoietic stem cell transplantation (HSCT) were analyzed using a conventional content analysis. RESULTS: Findings revealed the key challenges between parents in decision-making and how they cope with the challenges together as represented by two main themes of "Challenges faced by parents in making decisions together" and "Parents' collaborative coping with the challenges of making shared decisions." DISCUSSION: The majority of challenges that parents face in making decisions were closely related to the nature of the children's complex and life-threatening illness and uncertainty. However, supportive partner helped coping and decision-making, indicating the vital role of spouses in making decisions for their ill child. IMPLICATIONS: Assessing parents' marital relationship, providing enough information to ensure that both parents clearly understand the information, and encouraging parents to openly communicate with each other are recommended. Educating healthcare providers to support parents to partner together in shared decision-making is also required. Last, legislating laws that mandate providing psychological counseling services and developments of community-based interventions to support parental relationship would improve parents' shared decision-making. Further research on enhancing parental relationships in the context of a child's illness is required.

An observational study on maternal mortality and maternal near miss in a selected facility of West Bengal.

An observational study was performed at Purba Medinipur District Hospital, West Bengal, from April 1, 2018, to December 31, 2020, with an aim to find out the magnitude of maternal mortality and near miss cases and to assess the utilization of available maternal health care services by the deceased women and near miss cases. Result showed 4.5% women developed potentially life-threatening condition (PLTC) of which 21% women developed LTC. Maternal Near Miss (MNM) ratio was 9.46/1000 live birth and the MNM-to-Maternal Mortality ratio was 8.3:1 and the leading causes of MNM and maternal death were hemorrhage, pregnancy induced hypertension/eclampsia. The utilization of maternal health-care services revealed that there is a scope to increase the service delivery. Study finding indicates that health-care programs need to enhance the existing efforts to improve timely health seeking behavior of women.

Estimating the current and future prevalence of life-limiting conditions in children in England.

BACKGROUND: Previous studies showed increasing number of children with a life-limiting or life-threatening condition who may benefit from input from pediatric palliative care services. AIM: To estimate the current prevalence of children with a life-limiting condition and to model future prevalence of this population. DESIGN: Observational study using national inpatient hospital data. A population-based approach utilizing ethnic specific population projections was used to estimate future prevalence. SETTING/PARTICIPANTS: All children aged 0-19 years with a life-limiting condition diagnostic code recorded in Hospital Episodes Statistics data in England from 2000/01 to 2017/18. RESULTS: Data on 4,543,386 hospital episodes for 359,634 individuals were included. The prevalence of children with a life-limiting condition rose from 26.7 per 10,000 (95%CI 26.5-27.0) in 2001/02 to 66.4 per 10,000 (95% CI: 66.0-66.8) in 2017/18. Using a more restricted definition of a life-limiting condition reduced the prevalence from 66.4 to 61.1 per 10,000 (95%CI 60.7-61.5) in 2017/18. Highest prevalence was in the under 1-year age group at 226.5 per 10,000 and children with a congenital abnormality had the highest prevalence (27.2 per 10,000 (95%CI: 26.9-27.5)).The prevalence was highest among the most deprived group and in children of Pakistani origin.Predicted future prevalence of life-limiting conditions ranged from 67.0 (95%CI 67.7-66.3) to 84.22 (95%CI 78.66-90.17) per 10,000 by 2030. CONCLUSIONS: The prevalence of children with a life-limiting or life-threatening condition in England has risen over the last 17 years and is predicted to increase. Future data collections must include the data required to assess the complex health and social care needs of these children.

Towards enhanced telephone triage for chest pain: a Delphi study to define life-threatening conditions that must be identified.

BACKGROUND: Improving telephone triage for patients with chest pain has been identified as a national research priority. However, there is a lack of strong evidence to define the life-threatening conditions (LTCs) that telephone triage ought to identify. Therefore, we aimed to build consensus for the LTCs associated with chest pain that ought to be identified during telephone triage for emergency calls. METHODS: We conducted a Delphi study in three rounds. Twenty experts in pre-hospital care and emergency medicine experience from the UK were invited to participate. In round I, experts were asked to list all LTCs that would require priority 1, 2, and 4 ambulance responses. Round II was a ranking evaluation, and round III was a consensus round. Consensus level was predefined at > = 70%. RESULTS: A total of 15 participants responded to round one and 10 to rounds two and three. Of 185 conditions initially identified by the experts, 26 reached consensus in the final round. Ten conditions met consensus for requiring priority 1 response: oesophageal perforation/rupture; ST elevation myocardial infarction; non-ST elevation myocardial infarction with clinical compromise (defined, also by consensus, as oxygen saturation < 90%, heart rate < 40/min or systolic blood pressure < 90 mmHg); acute heart failure; cardiac tamponade; life-threatening asthma; cardiac arrest; tension pneumothorax and massive pulmonary embolism. An additional six conditions met consensus for priority 2 response, and three for priority 4 response. CONCLUSION: Using expert consensus, we have defined the LTCs that may present with chest pain, which ought to receive a high-priority ambulance response. This list of conditions can now form a composite primary outcome for future studies to derive and validate clinical prediction models that will optimise telephone triage for patients with a primary complaint of chest pain.

Maternal near miss and potentially life-threatening condition determinants in patients with type 1 diabetes mellitus at a university hospital in São Paulo, Brazil: a retrospective study.

BACKGROUND: To date, the rates of potentially life-threatening condition (PTLC), maternal near miss (MNM) and maternal deaths in pregnant patients with type 1 diabetes mellitus (T1DM) and variables associated to it have not been studied. METHODS: This study was as a cross-sectional retrospective study conducted at São Paulo Hospital of Universidade Federal de São Paulo, a tertiary hospital that provides public medical care through the Brazilian unified health system to high-risk pregnancies. Inclusion criteria were T1DM pregnant women who delivered from January 2005 to December 2015. Three groups were established by the World Heath Organization criteria and associations were assessed using the chi-square test in between MNM and no morbidity or PLTC and no morbidity. A P value < 0.05 was considered statistically significant. RESULTS: The final sample included 137 patients, 8 MNM cases (5.84%), 51 PLTC (37.23%), no cases of maternal deaths and 78 patients (56.93%) did not present any complication. Moreover, there were 122 live births, resulting in a near miss rate of 65.5 per 1.000 live births in patients with T1DM. Two of the MNM cases were for clinical criteria (uncontrollable fit in both) and laboratory criteria for the other six: one patient with severe acute azotemia (creatinine > 300 µmol/ml), one patient with severe hypoperfusion (lactate > 5 mmol/L) and four of them with loss of consciousness and the presence of glucose and ketoacids in urine. PLTC criteria were studied in MNM and PLTC cases. Prolonged hospital stay was the most prevalent PLTC criteria in both groups (100% of MNM cases and 96% of PLTC), followed by renal failure in 50% of MNM cases and severe preeclampsia in 22% of PLTC cases. This study could not find any association between prenatal factors or sociodemographic characteristics with maternal morbidity. CONCLUSIONS: MNM rate in T1DM was extremely high, and determined by complications of the primary disease or hypertensive disorders. No sociodemographic variables studied were related to maternal morbidity; therefore, we could not predict what increases MNM and PLTC in this specific population.

Communication between parents and well-siblings in the context of living with a child with a life-threatening or life-limiting condition.

Effective parent-child communication may serve to buffer the potential negative impacts of stressful situations on a child. Children who have a brother or sister with a life-threatening or life-limiting medical condition may turn to their parents for help with comprehending the situation, to help maintain their own ability to function across various life areas or to receive emotional support. There is a need for more investigation into the nature and importance of parent-child communication in the context of living with a seriously ill brother or sister. The current paper presents a framework of parent-sibling communication in the context of living with a seriously unwell child, distinguishing the focus of communication (illness-related vs. non-illness-related) and the purpose of communication (information-provision vs. emotional support). Such a framework offers a holistic approach to exploring some of the challenges of communication between parents and well-siblings. The state of current knowledge regarding the focus and purpose of communication between parents and well-siblings is reviewed, and implications for research and possible clinical applications discussed.

Family experiences with palliative care for children at home: a systematic literature review.

BACKGROUND: The main goal of pediatric palliative care (PPC) is to improve or maintain the best possible quality of life (QoL) for the child and their family. PPC can be provided in community health centres, within the specialist health care service and/or in the child's home. Home is often the preferred place for families, and recommendations state that, whenever possible, the family home should be the centre of care for the child. The aim of this study is to systematically review the experiences and needs of families with children receiving palliative care at home. METHODS: We conducted a systematic review and searched the peer-reviewed databases CINAHL, Embase, PsycInfo and MEDLINE for articles published between January 2000 and October 2019. We included 23 studies emphasising the experience of family members when their child (0-18 years) received palliative care at home. We used a thematic analysis to identify relevant themes in the literature, and synthesised the findings from the different studies. RESULTS: The review represents the experiences of the families of almost 300 children with life-limiting (LL) and life-threatening (LT) conditions receiving palliative care at home. In general, the children's mothers are interviewed, and seldom the sick children themselves or their siblings. Most families preferred staying at home since it made it easier to maintain a normal family life, was less stressful for the sick child, and meant that siblings could still attend school and be with friends. Families experienced a range of challenges due to the coordination of care, including a lack of support and adequately skilled staff with appropriate experience. Respite care was needed in order to cope with everyday life. Some studies were not specific concerning the place of care, and some relevant papers may have been omitted. CONCLUSIONS: Families receiving PPC need organised, individualised support from a skilled PPC team. Respite care is necessary in order to manage a demanding home-care situation and parents need support for siblings. Privacy to be a family is a need, and many families need financial support. Future studies should focus on PPC at home in the perspectives of sick children and their siblings.

[From sepsis to septic shock]. / Du sepsis au choc septique.

Septic shock, defined as the combination of sepsis, a requirement for catecholamines to maintain systolic blood pressure above 65 mmHg and a serum lactate level above 2 mmol/L despite adequate volume resuscitation is a life-threatening condition. The Quick Sepsis-related Organ Failure Assessment (qSOFA), which can be used by all nurses with a high-risk patient presenting with infection, enables the patient to be transferred rapidly to specialist care units.

Parenting in the face of childhood life-threatening conditions: The ordinary in the context of the extraordinary.

OBJECTIVE: Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context. METHOD: Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings. RESULTS: Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children. SIGNIFICANCE OF RESULTS: The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.

Exploring the perceived met and unmet need of life-limited children, young people and families.

This article presents an original study commissioned by the UK charity, Together for Short Lives which explored children and young people up to 25 years of age with life-threatening/limiting conditions and their families. Using Appreciative Inquiry and framework analysis, qualitative work sought to explore perceived met and unmet needs of services and care. Fifty-one families were interviewed from one UK area, 18 of which were children/young people up to 25 years old. Findings indicated that children and their families felt medical/nursing needs were well met but provision was needed for broader financial, social and emotional support alongside more responsive specialist therapies.

Risk factors and circulation pattern of respiratory syncytial virus in children under 2 years in Maputo, Mozambique.

BACKGROUND: Evidence on risk factors for respiratory syncytial virus (RSV) in low-resource settings is limited. In Mozambican children <2 y of age with severe acute respiratory infection (SARI), we explored risk factors for RSV, described its seasonal variation and assessed associations between RSV and a life-threatening condition. METHODS: We retrospectively included participants presenting in 2017-2018 in two hospitals in Maputo. RSV was detected and subtyped using real-time quantitative reverse transcription polymerase chain reaction on nasopharyngeal swabs. We used logistic regression and χ2 tests to assess associations and Spearman's correlation coefficient to assess the correlation between weather measurement and RSV positivity. RESULTS: RSV was detected in 23.1% (n=109) of 472 included children and in 50.0% (20/40) of those <3 months old. Being <3 months (vs >1 y) was associated with RSV (adjusted odds ratio 4.3 [95% confidence interval 2.1-8.5]). RSV status was not associated with experiencing a life-threatening condition. RSV A and B co-circulated during the study period, but one type predominated in each year. In 2017, the RSV positivity rate was correlated with monthly average temperature (r=0.793, p=0.002) and precipitation (r=0.596, p=0.041). CONCLUSIONS: In Mozambican children with SARI, RSV was prevalent, especially in neonates. However, RSV was not associated with a life-threatening condition.

"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition.

BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves. METHOD: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials. RESULTS: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own. CONCLUSION: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.

Suffering in children and adolescents in paediatric palliative care in Spain: psychometric properties of the qESNA scale.

OBJECTIVE: To analyze the psychometric properties of the qESNA scale and its usefulness to assess the suffering of paediatric patients with life-limiting and/or life-threatening diseases (children with LLTC) in clinical practice. METHODS: Cross-sectional and longitudinal study in 58 patients in Spain (female, 32.8%; mean age, 15.6 [SD, 4.5]; age range, 8-23 years), with administration of the qESNA scale along with other scales to assess anxiety, depression, emotion regulation and psychosocial functioning. We performed exploratory and confirmatory factor analyses and calculated goodness-of-fit indices were calculated; we assessed reliability by means of the Cronbach alpha and temporal stability and convergent validity through the intraclass correlation coefficient with scales used to assess psychological disorders and the specificity and sensitivity through ROC curves. RESULTS: The factor analysis identified a 14-item scale with 3 factors, a comparative fit index of 0.93, a Tucker-Lewis index of 0.91 and a root mean square error of approximation of 0.07. The Cronbach alpha was 0.85 and the intraclass correlation coefficient was 0.66. The convergent validity was high for the correlation to the risk of depression (-0.69) and of anxiety (-0.60) and emotional changes (-0.59). The analysis of the ROC curves showed that a score of less than 81 would be indicative of suffering, with a sensitivity of 83.33% and a specificity of 93.48%. CONCLUSIONS: This study confirmed that the psychometric properties of the qESNA scale are good and the scale's usefulness as an instrument to detect emotional suffering in children with life-limiting or life-threatening illnesses in clinical practice.

Placenta Previa et Percreta: A Potentially Life-Threatening Condition.

Placenta percreta occurs in about 5% of placenta accreta spectrum (PAS) and causes high maternal and fetal peripartum morbidity/mortality. A 34-year-old multiparous 4G2P (1xcesarean section (CS)) was admitted to hospital at the 34th week of gestation. Transvaginal ultrasound revealed a placenta previa totalis et percreta with a small tissue layer towards the bladder. Ultrasound was crucial for further planning. An interdisciplinary setting was established based on this life-threatening diagnosis. Due to the onset of labor one day later, a CS was performed. Intraoperatively, the suspicion was confirmed of a placenta previa et percreta with CS scar infiltration. Due to the life-threatening bleeding risk, simultaneous subtotal hysterectomy was needed. The diagnosis was confirmed histologically. The higher the number of previous CS, the higher the PASrate. Placenta percreta is the most severe form of this, characterized by placental invasion through the entirety of the myometrium and possibly into extrauterine tissues. This case demonstrates the great importance of prenatal diagnosis with the realization of dimensions of this very rare finding, especially with an increasing CS rate and other associated complications. Due to the close interdisciplinary cooperation of the prenatal diagnosticians, obstetricians, and anesthesiologists with optimal care in a specialized center, the otherwise high morbidity/mortality can be minimized.

[Littoral cell angioma]. / Dongasejtes angioma.

Splenic rupture secondary to blunt trauma is a common condition. Non-traumatic, also known as spontaneous or pathological splenic rupture is an uncommon, but potentially life-threatening condition. Spontaneous splenic rupture caused by a primary splenic tumor is rare. In this case study, we present a special, benign tumor causing splenic rupture. Our 78-year-old female patient was hospitalized due to left shoulder pain and chest discomfort. Her blood pressure was low, the laboratory tests showed anemia, and the chest CT scan involving also the upper abdomen raised the suspicion of a splenic rupture. During the emergency splenectomy, there was a large amount of blood in the abdominal cavity. Macroscopic pathological examination of the removed spleen showed multifocal cystic lesions that led to splenic rupture. Immunhistochemical analyses revealed a littoral cell angioma. Littoral cell angioma is a rare, benign vascular tumor of the spleen, which is thought to originate from the red pulp sinuses lined with littoral cells. The aim of our report is to describe an unusual cause of sudden splenic rupture without traumatic history, the histologically benign littoral cell angioma that has not been published in Hungary. Orv Hetil. 2023; 164(10): 393-397.

An agenda to develop Pediatric Palliative care programs to serve children with life-threatening and life-limiting conditions in the Gulf Cooperation Council countries.

Medical advances have increased the number of children living with life-threatening/life-limiting illnesses worldwide, including in Gulf Cooperation Council (GCC) countries. Pediatric palliative care (PPC) is a relatively young subspecialty that cares for children with life-threatening/life-limiting illnesses and their families. PPC aims to alleviate physical, psychological, and social distress in children with life-threatening/life-limiting illnesses and their families and improve their quality of life. PPC is an essential service that should be implemented in all nations, as it is a human right. Moreover, a core value of PPC services is to alleviate children's suffering, irrespective of cure availability. Hence, the global consensus on palliative services must be universal and include developing countries with limited resources. While PPC services are growing internationally, the GCC countries have yet to implement these valuable services in the region. This work aims to define the local base information important to facilitating the PPC program. We explored and identified the information vital for establishing a successful program, which was then categorized and mapped into subgroups. In doing so, we outline a roadmap to facilitate the smooth introduction of PPC in GCC countries to benefit the lives of children with life-limiting illnesses.