Search

Objectives: To explore whether training on the SICG-Peds© (Serious Illness Guide for Pediatrics) impacts a pediatric clinician's confidence and knowledge in participating and initiating/leading difficult conversations with families of children living with a serious illness. Methods: Over 2 years, clinicians from BC and Ontario who care for children with serious illnesses attended training workshops on the SICG-Peds©. These workshops were evaluated using pre- and post-workshop questionnaires. Participants reported confidence scores on a scale of 1 to 10. Results: In total, 134 and 140 clinicians attended the workshops in BC and Ontario, respectively. The majority of clinicians who completed the immediate post-workshop survey (N = 223, 94.5%), responded that the content enhanced their knowledge about pediatric serious illness conversations (SIC). Confidence scores in initiating/leading a SIC significantly increased from median 5 (interquartile range [IQR] 3-7) pre-workshop to 7 (IQR 7-9) immediately post-workshop (P <.0001). Confidence scores in participating as a non-leader in a SIC also significantly increased from median 7 (IQR 6-9) pre-workshop to median 8 (IQR 7-9) immediately post-workshop (P <.0001). Conclusions: Overall, these workshops significantly improved participants' confidence. Effectiveness and knowledge enhancement were other areas where the majority of participants reported positive improvements. Areas for continued support were identified as more mentoring, and training for supporting the guide's use in a clinical setting. [ABSTRACT FROM AUTHOR]

Background: The perspectives of children with life-threatening or life-limiting (LT/LL) conditions have predominantly been conveyed through their parents rather than heard from the children themselves. Despite an increase in studies focusing on children's perspectives in pediatric palliative care, this research remains limited, particularly in including children who are unable to express themselves orally. Objective: This study seeks to address gaps in existing knowledge, especially the limited inclusion of children's perspectives and the exclusion of children with communicative and cognitive disabilities. The aim of this study was to explore the lived experiences of children living with LT/LL conditions. Design: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. Methods: Twelve children with cancer or genetic conditions participated. Due to the children's varying cognitive and communicative abilities, multiple data collection methods were employed to capture the children's perspectives, including interviews, interactions, descriptions of the children's non-verbal expressions, and an adapted photo elicitation method. Data were analyzed using thematic analysis. Results: The findings showed that the children's attention revolved around life rather than illness. The analysis revealed the presence of three themes: wanting to engage in life, being dependent on familiar relations, and the importance of cherished items. Conclusion: Professionals across various levels within pediatric palliative care should acknowledge children's desire to engage in life despite serious illness and facilitate participation. Practices should be implemented to support children's agencies and expressions of what is important to them. This recognition can guide care plans and interventions at all levels of pediatric palliative care when a child is living with an LT/LL condition. The study emphasizes that children with LT/LL conditions are children first and foremost, with a fundamental need to participate in meaningful activity, just like any other child. [ABSTRACT FROM AUTHOR]

Background: In pediatric palliative care, the main caregiver is primarily responsible for managing pharmaceutical therapies. Few data are available regarding the influence of this burden on quality of life in terms of time, concerns as well as a considerable risk of administration errors and adverse effects. This study aims to investigate how caregivers prepared and administrated medication, including errors and associated expectations, to identify improvement interventions. Methods: Between October 2022 and March 2023, a descriptive single-center survey study was carried out in the tertiary care pediatric palliative center of the Padova University Hospital. Participants were the caregivers of the patients followed by our center up to 23 years old, receiving at least one drug daily and who cannot self-administer their therapy. The questionnaire consisted of 18 multiple-choice and semi-closed questions, grouped into 4 main topics: therapy preparation, therapy administration, administration errors and therapy assessment. Results: A total of 100 caregivers responded to the survey. Mothers represented the main caregiver (91%). The prevalence of polypharmacy was 67% across the patients. 52% of caregivers handled prescriptions at least three times per day and for 32% it took to prepare them more than 5 min each time. Only 59% reported to have been trained for preparing and administrating drugs. 14% reported having made at least a drug administration error due to the tiredness or the complexity of therapeutic regimens in the preceding three months. Nearly one caregiver out of three felt their child was using too many drugs. 73% positively welcomed the possibility of having clinical pharmacist-led counseling. Conclusions: Many caregivers of pediatric palliative care patients frequently have trouble planning, preparing and delivering pharmacological therapy to their children. Attempting to simplify medication regimens, choosing formulations that are simpler to administer and measure, investing in improved caregiver training, talking about therapies with carers, and involving clinical pharmacists to clarify their doubts could be all potential strategies to improve this condition and reduce their burden. [ABSTRACT FROM AUTHOR]

Context: As pediatric palliative care (PPC) expands within institutions and nationally, little guidance is available on building outpatient programs. Objectives: We asked outpatient PPC (OPPC) program leaders in the United States about clinic development experiences to gather advice for growing programs. Methods: As part of a larger OPPC study, 48 freestanding children's hospitals with inpatient PPC programs were invited to complete a survey on OPPC. Self-selected participants were sent a follow-up survey soliciting free-text responses about development experiences. Quantitative data were analyzed with descriptive statistics. Qualitative data underwent inductive content analysis. Results: Thirty-six hospitals completed the initial survey, and 28 (78%) reported practicing clinic-based OPPC. Twenty-two of 28 completed program development questions. More than half (12/22, 55%) recommended a minimum total billable full-time equivalent (FTE) ≥3 before expanding into the outpatient setting. About two-thirds (14/22, 64%) suggested a minimum billable FTE ≥4 for 24/7 coverage. Half (50%) reported that their program grew from subspecialty clinics, most frequently hematology-oncology (10/11, 91%). Half (50%) placed initial limits on referrals, with many restricting schedule availability (7/11, 64%). Six of 12 participants (50%) willing to share more about their development experience completed a follow-up survey, from which three themes emerged: program logistics, expectations and boundaries, and establishing role and workflow. Participants focused advice on slow programmatic growth to optimize sustainability. Conclusion: Program leaders offer tangible guidance informed by their OPPC development experience. Future work is needed to leverage this advice within institutions to promote resilient and sustainable PPC growth. [ABSTRACT FROM AUTHOR]

Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be bewildering and highly anxiety-inducing. However, clinical observations seem to point to a more heterogenous care offer, including a lack or discontinuity of services, at the expense of their quality of life. Objective: This paper aims to establish a portrait of the existing literature and identify research gaps on the multiple transitions experienced by this population. Design: A scoping review is provided, following a PRISMA protocol. MEDLINE, PubMed and CINAHL were consulted. The search strategy is based on three key concepts: (1) palliative care/complex condition, (2) child/adolescent, and (3) transition. Articles were screened with the help of Covidence. Results: A total of 72 articles are included for analysis. The aimed population is either identified by age group or by medical status. Respondents are most often parents rather than the children themselves. Transitions include: reaching adulthood, changes in care environment, changes in medical status, and school integration. Conclusion: The discussion notices a definitional murkiness about transitions and highlights the fact that the multifaceted and complex nature of transition over time is largely ignored. New research should involve a diversity of participants and include children's voices. Recommendations include clearer concept definitions, health care policies that adopt an ecosystemic approach, and professional training in the systemic family approach in palliative care. [ABSTRACT FROM AUTHOR]

Adolescence is a challenging time at baseline, and a sibling receiving end-of-life care can alter an adolescent's life irrevocably. It is imperative for the medical team to understand the unique needs and perspectives of such an adolescent sibling. This in turn facilitates the anticipation of an adolescent's grief response, and allows for parents to be appropriately guided. However, more can be done to evaluate the needs of adolescent siblings and improve their support. This can be through establishing a validated needs-based questionnaire, empowering families and the multidisciplinary team to engage siblings, and diverting resources toward culturally sensitive support groups for siblings with critical illness. A framework to involve key players in the adolescent's circle is presented. [ABSTRACT FROM AUTHOR]

Introduction: Providers working with children who are dying are especially prone to burnout. The enhancement of human flourishing in providers may mitigate burnout and improve quality of care. However, the relationship between job satisfaction and human flourishing has not been well studied. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey. The survey also included open-ended questions to explore opinions and attitudes about job satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction (an indicator of flourishing) was associated with private religious activities (r =.38, P <.05), and carrying religion into all aspects of life (r =.44, P <.05). Burnout was not associated with life satisfaction, although power was limited. Qualitative analysis of open-ended questions revealed the following themes as factors contributing to satisfaction at work (flourishing): being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and working within the context of a multi-disciplinary team. A number of challenges to this work were also identified, including lack of resources, problems within the team, and the emotional demands of care. Conclusions: Despite job stress and the difficult work of caring for terminally ill children, several factors were associated with flourishing. These findings may help to enhance the flourishing of caregivers in the resource-challenged setting of pediatric palliative care in South Africa. [ABSTRACT FROM AUTHOR]

Copyright of Clínica Contemporánea: Revista de Diagnóstico Psicológico, Psicoterapia y Salud is the property of Colegio Oficial de Psicologos de Madrid and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Purpose: The purpose of this study was to deepen our understanding of the experiences of community-based pediatric physiotherapists working in the field of pediatric palliative care, with a particular focus on unravelling the emotional dimension of their work. Design, material and method: Inspired by phenomenological theory, the material from five individual qualitative interviews with pediatric physiotherapists, from five different counties, were analyzed thematically. All participants were recruited through the Facebook- group “Forum for barne- og ungdomsfysioterapeuter”. Findings: The following three themes were analyzed and presented in the article: 1) Making a small difference. 2) Nuances of grief. 3) The necessary conversations. The findings reveal the varying emotional challenges experienced by physiotherapists working with pediatric palliative care . The findings raise questions about whether there is a connection or contradiction between emotions and professionalism. We examine and elaborate this in the discussion through the phenomenological concepts; intersubjectivity, body and lifeworld. Conclusion: Community-based physiotherapists who work in pediatric palliative care experience emotional challenges. In these emotional challenges, they feel that they have to balance between a professional closeness and a distanced professionalism. It is also about a balancing act between the focus on life and on death. Professionalism as a multidimensional balancing act can be seen as a consistent finding from the study.

Abstract Background To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual Care Plan (ICP) for PPC was developed. However, in practice, the ICP for PPC is not used for all children in need of PPC. Insight into why, for which problem and for which children HCPs wish to use an ICP in PPC is therefore necessary to assure that the ICP can be fully implemented in practice. Methods Two semi-structured focus group interviews were held with 15 experienced healthcare professionals in PPC. Data were thematically analyzed. Results Participants wish to use an ICP to collaboratively establish a plan with parents for the current and future care and treatment of the child. By doing so, they hope to achieve coordination and continuity of care, to achieve shared decision-making, and to support parents and other healthcare professionals in the care of the child. Participants think the ICP could also be used in the care for children with complex chronic conditions. Conclusion The purposes for which healthcare professionals wish to use an ICP in PPC are broader than the purpose for which the ICP for PPC was developed. Future research should focus on whether the use of an ICP in PPC practice can achieve these purposes.

Abstract Background The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community care, general PPC, or specialized PPC) and to improve the delivery of PPC care. Methods Aiming at obtaining information about the referrals to the Padua Pediatric Hospice that could help estimate the investments needed to improve the provision of care, a retrospective analysis has been carried out. The rate of proper referral and discharge, the number of patients followed at the hospice, the mortality rate, and the length of follow-up were analyzed, and, when possible, data were stratified by oncological and non-oncological diseases. Results The analysis showed that of the 870 patients referred to the Padua Pediatric Hospice between 2008 and 2022, 76% were affected by non-oncological conditions. 82% of patients referred were taken in charge and most of the remaining patients have been inappropriately referred. The analysis showed a growing number of total referrals, which increased by 195% from 2008 to 2022. An increase in proper referrals and referrals of non-oncological patients was observed alongside a decrease in oncological patient referrals and a trend toward a decrease in discharge rates. A decreased mortality was observed in patients with non-oncological conditions, with only 6% of deceased patients in 2022. Moreover, a longer survival with a median follow-up length of 43 months was observed among patients with non-oncological conditions who were followed up at the Padua Pediatric Hospice for more than 12 months. Conversely, the short survival rate observed for oncological patients suggests that those patients should have been referred to PPC earlier to benefit from palliative care for longer periods. Conclusions Considering these data, it is expected that the number of patients needing PPC services will steadily increase in the next years. Hence, there is a need to invest resources to provide the best care delivery model encompassing specific pathways for the transition into adulthood, the establishment of networks within all the Italian regions, and an efficient referral to the more suitable setting of care.

Background: To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual Care Plan (ICP) for PPC was developed. However, in practice, the ICP for PPC is not used for all children in need of PPC. Insight into why, for which problem and for which children HCPs wish to use an ICP in PPC is therefore necessary to assure that the ICP can be fully implemented in practice. Methods: Two semi-structured focus group interviews were held with 15 experienced healthcare professionals in PPC. Data were thematically analyzed. Results: Participants wish to use an ICP to collaboratively establish a plan with parents for the current and future care and treatment of the child. By doing so, they hope to achieve coordination and continuity of care, to achieve shared decision-making, and to support parents and other healthcare professionals in the care of the child. Participants think the ICP could also be used in the care for children with complex chronic conditions. Conclusion: The purposes for which healthcare professionals wish to use an ICP in PPC are broader than the purpose for which the ICP for PPC was developed. Future research should focus on whether the use of an ICP in PPC practice can achieve these purposes. [ABSTRACT FROM AUTHOR]

Background: PalliPed is the first Italian nationwide project aimed at describing the characteristics of patients accessing specialized pediatric palliative care (PPC) and their families, in the main care settings (hospice, home care, and hospital). The project's secondary aim is to assess the extent and quality of regional PPC networks/facilities and the number of dedicated resources. In this article, we present the results of the first part of the project. Methods: All Italian PPC centers/facilities were invited to participate in the project. Children and young adults in the care of the specialized PPC networks/structures as of 24 October, 2022, including prenatal care, were involved. Children's eligibility for specialized PPC was assessed according to the Assessment Form for Complex Clinical Needs in Pediatrics (ACCAPED Scale) and after a multidisciplinary assessment by the healthcare team. Data were collected through an online survey. Results: A total of 867 patients were described. The lack of adequate specialized PPC service emerged, according to the available estimate of specialized PPC needs, as well as the need for improved referral to PPC by pediatricians or territorial services, particularly for infants and oncological patients. More family support measures also seem necessary, particularly for the mothers. Healthcare providers' communication skills should be improved to ensure greater involvement of patients and families in care decisions. Conclusions: This analysis represents the first step toward defining a constantly updated database for the census and monitoring of specialized PPC activities at the national level. This research model can be extended to other realities in different countries, allowing comparison of different care models. [ABSTRACT FROM AUTHOR]

Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused interventions that enhance child and family health. Explore and describe the family-level impact of pediatric serious illness. We conducted a librarian-assisted scoping review using Arskey and O'Malley's approach. We searched PubMed, Scopus, CINAHL, and EMBASE databases for empirical publications from 2016 to 2021 that focused on families navigating serious pediatric illness published in English. Two reviewers assessed eligibility, with discrepancies resolved by a third. We used Covidence and REDCap for data management and extraction. We screened 10,983 abstracts; 309 abstracts were included in full text screening. The final group of 52 citations was analyzed by the entire team. Most research was conducted in Western Europe and North America. The perspectives of parents of children with cancer were most frequently described; voices of seriously ill youth and their siblings were less often presented. Most of the research was descriptive qualitative, followed by descriptive quantitative. Few studies were mixed methods, inferential, or interpretive. Studies most often described parent, youth, and family experience with illness and less often explored family processes and relationships. Irrespective of the approach (i.e., qualitative, quantitative), few studies focused on families as the analytic unit or used family-level analysis techniques. Study participants were usually from local dominant populations and less often from historically marginalized communities. The robust, descriptive, and individual-level evidence describing family impact of serious pediatric illness provides a solid foundation for future research priorities. Stronger integration of family techniques and diverse family voices in pediatric palliative care research can clarify family processes, illuminate structural barriers, and inform interventions that are responsive to family needs. These steps will enhance the education, policy, and clinical provision of PPC to all who would benefit, thereby advancing health equity for children living with serious illness and their families. [ABSTRACT FROM AUTHOR]

Objectives: Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care. Methods: In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0–10 visual analog scale. For each child, a health professional also rates the child's emotional status using the same scale. Results: The average child's emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children's emotional well-being significantly higher than professionals (t -test = 4.6, p -value < .001). Health professionals rated the children's emotional well-being significantly lower when the disease status was progressive than when the disease was not (t -test = 2.2, p -value = .037). Significance of results: Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation. [ABSTRACT FROM AUTHOR]

Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission. 1 The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help pediatric surgeons better determine the clinical settings in which certain procedures will not enhance palliation or survival. Methods: A retrospective single institution chart review was performed for patients age 14 days to 18 years with chronic conditions who died while inpatient from 2013–2017. Data was gathered on demographics, primary diagnosis, intubation status, palliative care involvement, duration of hospital stay, length of palliative care involvement, and total number of procedures. Negative binomial regression was used to assess association with number of procedures. Results: 132 children met inclusion criteria. Most children were White and less than one year old. The most common type of diagnosis was cardiac in nature. Children underwent an average of three procedures. 75% were intubated and 77.5% had palliative care involved. Patients who were less than one year old at death were more likely to have been intubated, had longer terminal hospital stays, and had more procedures. Those who were intubated underwent more procedures and had longer hospital stays. Those with longer palliative care involvement had fewer procedures. Conclusions: Children undergo a significant number of surgical procedures during their terminal hospitalization. This may be influenced by age, intubation status, and length of stay. Ongoing study may help refine which procedures may have limited impact on survival in the chronically ill pediatric population. [ABSTRACT FROM AUTHOR]

Background: The Individual Care Plan (ICP) for pediatric palliative care translates the general guideline recommendations into a personalized plan for the child. Various documents exist in pediatrics globally, aimed at facilitating anticipatory care or coordinating end-of-life care. The ICP aims both, but user experiences have not been studied post-development. Objective: The overall aim is to enhance knowledge and understanding of the content of the ICP from the perspectives of parents and healthcare professionals (HCPs). Design and method: We conducted a mixed-method study using a convergent parallel design consisting of questionnaires and individual and focus group interviews among parents and HCPs having user experience with the ICP. The questionnaire and interview data were analyzed separately. Quantitative data were descriptively analyzed using mean, ±SD, and median. Qualitative data were thematically analyzed. A narrative approach and joint display were used to describe the results. Results: In total, 27 parents and 161 HCPs participated. Overall, the content of the ICP was seen as important and complete, but changes and additions were called for on language, structure, and content. The chapter on the needs and wishes of child and parents was considered most important. HCPs would like to see this chapter expanded to incorporate more advance care planning outcomes, and parents wished for this chapter to reflect better who their child is. HCPs mentioned missing a chapter for palliative sedation, mainly to guide other HCPs. The ICP was appraised as not user-friendly and might possibly improve by making the ICP available in a secure digital environment. Conclusion: To meet the needs of parents and HCPs considering importance and completeness of the content of the ICP and its user-friendliness, changes are necessary in the content of the ICP, and preferably the ICP should be made digitally available. Although various documents exist globally to facilitate anticipatory care or coordinating end-of-life care, it appears that the combination of describing the values and preferences of the child and parents, along with medical decisions and life-sustaining treatments, makes the ICP a unique and comprehensive care plan. [ABSTRACT FROM AUTHOR]

Copyright of Mersin University School of Medicine Lokman Hekim Journal of History of Medicine & Folk Medicine is the property of Mersin University School of Medicine and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Aim: To study Swedish pediatric oncologists’ practical and emotional experiences of referring, including and/or treating children in early-phase clinical trials. Methods: A nationwide study was conducted using a mixed-method approach. Structured interviews based on a study-specific questionnaire and participants’ personal reflections were utilized. Survey responses were analyzed using descriptive statistics, while participants’ comments were analyzed using thematic analysis. All interviews were recorded and transcribed verbatim. Results: In total, 29 physicians with 4 to 32 years of experience in pediatric oncology participated, with 19 (66%) having > 10 years of experience. Three themes appeared: 1) Optimization-based approach focused on finding the most suitable treatment and care for every child with a refractory/relapsed cancer eligible for an early-phase clinical trial; 2) Team-based approach aimed at establishing local and national consensus in decision-making for treatment options, including early-phase clinical trials and palliative care; 3) Family-based approach in which the physicians provided families with actionable information, listened to their desires, and endeavored to maintain hope in challenging circumstances. Several participants (40% with ≤ 10 years of experience and 58% with > 10 years of experience) viewed the early-phase clinical trial as a potential “chance of cure”. A majority (80%) of physicians with ≤ 10 years of experience, reported that they often or always felt personally and emotionally affected by communication regarding early-phase clinical trials. Delivering difficult news in cases of uncertain prognosis was identified as the major challenge. None of the study participants felt adequately prepared in terms of sufficient knowledge and experience regarding early-phase clinical trials. The physicians expressed a need for guidance and training in communication to address these challenges Conclusions: Working with early-phase clinical trials highlight a field where physicians cannot solely rely on their expertise or past experiences, and where they are likely to be deeply emotionally involved. Physicians who care for children eligible for such studies require targeted educational initiatives and supervision. [ABSTRACT FROM AUTHOR]

Background: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community care, general PPC, or specialized PPC) and to improve the delivery of PPC care. Methods: Aiming at obtaining information about the referrals to the Padua Pediatric Hospice that could help estimate the investments needed to improve the provision of care, a retrospective analysis has been carried out. The rate of proper referral and discharge, the number of patients followed at the hospice, the mortality rate, and the length of follow-up were analyzed, and, when possible, data were stratified by oncological and non-oncological diseases. Results: The analysis showed that of the 870 patients referred to the Padua Pediatric Hospice between 2008 and 2022, 76% were affected by non-oncological conditions. 82% of patients referred were taken in charge and most of the remaining patients have been inappropriately referred. The analysis showed a growing number of total referrals, which increased by 195% from 2008 to 2022. An increase in proper referrals and referrals of non-oncological patients was observed alongside a decrease in oncological patient referrals and a trend toward a decrease in discharge rates. A decreased mortality was observed in patients with non-oncological conditions, with only 6% of deceased patients in 2022. Moreover, a longer survival with a median follow-up length of 43 months was observed among patients with non-oncological conditions who were followed up at the Padua Pediatric Hospice for more than 12 months. Conversely, the short survival rate observed for oncological patients suggests that those patients should have been referred to PPC earlier to benefit from palliative care for longer periods. Conclusions: Considering these data, it is expected that the number of patients needing PPC services will steadily increase in the next years. Hence, there is a need to invest resources to provide the best care delivery model encompassing specific pathways for the transition into adulthood, the establishment of networks within all the Italian regions, and an efficient referral to the more suitable setting of care. [ABSTRACT FROM AUTHOR]

Objectives Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their families. Methods A parallel mixed-methods design was used. The P-FBDT protocol was developed based on the adult DT, and meanwhile by taking children-specific dignity characteristics and Chinese family-oriented culture into consideration. The protocol was then evaluated and modified based on the quantitative and qualitative feedback from 2-round surveys of 14 pediatric oncology or pediatric palliative care experts. Results The P-FBDT involves terminally ill children and their families in meaningful interactions including a series of conversations and creative activities, which will be recorded and then edited into a document-based generativity entity. The P-FBDT protocol was recognized as highly reasonable and the P-FBDT interview guide was endorsed as important, acceptable, clear, comprehensive, and suitable to be used in pediatric palliative care practice in Chinese culture (>90%). Potential benefits, possible challenges, and practical considerations of the P-FBDT were also proposed. Significance of results The P-FBDT was perceived to be potentially beneficial to terminally ill children and their families by engaging in a series of meaningful family interactions and creating a lasting memento to be preserved. The protocol needs to be pilot tested among terminally ill children and families for feasibility and potential efficacy in practice. [ABSTRACT FROM AUTHOR]

Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in daily practice. To further implement the ICP, it is important to identify how parents and healthcare professionals use the ICP and which obstacles or benefits are experienced. Methods: This mixed-method study used qualitative interviews and quantitative questionnaires in (bereaved) parents and healthcare professionals with experience with the ICP. Results: Parents and healthcare professionals used the ICP to establish a joint plan for care and treatment of the child to coordinate care and to achieve child- and family-centered care. This includes both obstacles that complicate achieving care goals and benefits that make it easier. Furthermore, responsibilities for the ICP remained unclear, and there was no set point in the illness trajectory for drawing up the ICP. Conclusions: Parents and healthcare professionals use the ICP as intended. However, uncertainties regarding timing, roles and responsibilities prevent optimal use of the ICP. Agreements on timing and responsibilities are needed for further ICP implementation in daily pediatric palliative care practice. [ABSTRACT FROM AUTHOR]

This scoping review aimed to provide an overview of the current landscape of pediatric palliative care in Latin America, including policies, regulations, available resources, challenges, barriers, and evidence-based recommendations. We conducted a comprehensive search for peer-reviewed articles related to pediatric palliative care in Latin America, considering both review and empirical articles published in English, Portuguese, or Spanish within the last decade. Our review initially identified 30 publications, which were subjected to a full-text assessment. The majority of these articles originated from Brazil, Mexico, and Chile, highlighting a regional concentration of research efforts. Notably, we observed a scarcity of comprehensive research and specific studies on pediatric palliative care in Latin America. Our findings revealed significant challenges, including resource limitations, the absence of dedicated policies, and the critical need for interdisciplinary teams to address the multifaceted aspects of pediatric palliative care. In light of our review, we emphasise the necessity for more extensive and representative research efforts, as well as the continuous updating of scientific evidence in the field of pediatric palliative care within the Latin American context. The recommendations derived from this review aim to contribute to the enhancement of pediatric palliative care services and accessibility throughout Latin America.

Burnout se define como la experiencia del contexto laboral caracterizada por agotamiento emocional, despersonalización y baja realización personal, que surge en respuesta a diferentes factores, entre ellos, el contacto con el sufrimiento humano y la muerte. El riesgo de sufrir burnout en trabajadores de la salud es muy elevado. En particular, el equipo humano de las unidades de Cuidados Paliativos Pediátricos hace frente a la enfermedad de los niños/niñas y asiste inevitablemente a su fin de vida y duelo anticipado de padres y familiares. Este estudio ofrece el diseño de una propuesta de intervención psicológica basada en el programa MBSR, que se plantea como ensayo experimental aleatorio con grupo experimental y control. Se espera que los resultados muestren mejora en los resultados en burnout, calidad de vida, regulación emocional, habilidades de atención plena, resiliencia y autocompasión, favoreciendo su bienestar y, en consecuencia, la calidad de atención al paciente y familiares.

Abstract Background The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses. Methods We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia. Results Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare. Conclusions This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings.

Abstract Background Only four centers in Egypt provide Palliative Care (PC) for adult cancer patients and one provides care for pediatric cancer patients. While PC is not widely utilized in Egypt, this study aims to assess patients’ need for PC from the providers’ perspective. The primary objectives were to assess providers’ knowledge about PC, understand patients’ needs, and compare children’s and adults’ needs for PC. Methods A descriptive exploratory design was utilized. Patients were recruited from a cancer center in Qena Governorate, Egypt. All 108 nurses and physicians in the cancer center were interviewed to assess their perspectives about PC and patients’ need for it. Results Of the 108 care providers, more than 60% of the providers were not familiar with the concept of PC and did not participate in related activities, and more than 77% did not receive any training on the topic. All the providers reported there is no specific policy for end-of-life care. More than 60% of the providers responded that their patients do not need PC as the providers believe that PC provided only for end-stage patients. 50% of the providers see that PC has benefits such as pain relief and symptom management. No major differences were noted between pediatric and adult PC needs. Conclusion The results of this study provide foundational evidence of providers’ lack of experience with and understanding of palliative care. This deficit is creating a barrier to providing palliative care in Egypt.

Abstract The interface between pediatric palliative care (PPC) and inborn metabolic diseases (IMD) remains incipient, though these conditions fill the state of art of complex chronic diseases, eligible to this health approach. We analyzed the medical records of PPC clinic during the years 2001 to 2021 and the IMD outpatients. We established a parallel with the world scientific literature concerning the epidemiology of PPC and IMD. Among outpatients, 14% were diagnosed with IMD, which were referred to the PPC service earlier compared to Non‐IMD cases. The Group 3 (complex molecules) was the most frequent (64.7%), following by Group 1 representing by small molecules (21.6%), the latter having a lower median age at diagnosis when compared to the former (0.7 vs. 5.2 years, p = 0.001). The sphingolipidoses were the pathologies most frequent in our cohort, in line with what was observed in the literature. There were no differences between IMD groups in terms of diagnosis and PPC referral age, however in Non‐IMD conditions, the age of diagnosis were earlier than IMD. Nevertheless, IMD group showed lower age of referral to PPC. The IMD comprises large fraction of outpatients in the PPC setting, thus further studies are needed in this field.

Abstract Background To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries’ (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. Methods The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. Results In total, the Nordic child population comprises around six million children (0–19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. Conclusion This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context.

Abstract Background In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support the provision of care. Research has highlighted the role of healthcare personnel when utilizing health technology in home-based pediatric palliative care, but specific knowledge of healthcare personnel’s views on the technological relevance remains limited. Therefore, our study has explored potentials and limitations of health technology in home-based pediatric palliative care from the perspectives of healthcare personnel. Methods Our study utilized a qualitative, descriptive, and exploratory design, including five focus groups with a total of 22 healthcare personnel. The participants were selected from various health regions in Norway and were experienced in providing home-based pediatric palliative care. Using reflexive thematic analysis, we interpreted data obtained from focus groups, identified patterns, and developed themes. Results The analysis resulted in the development of three intersecting themes: balancing in-person interaction and time in home-based pediatric palliative care; exchange of information can improve timely and appropriate care; and the power of visual documentation in pediatric palliative care. The healthcare personnel acknowledged difficulties in fully replacing in-person interaction with health technology. However, they also emphasized potentials of health technology to facilitate information sharing and the ability to access a child’s health record within interdisciplinary teams. Conclusion The results underscored that technology can support pediatric palliative care but must be thoughtfully integrated to ensure an individualized patient-centered approach. To maximize the benefits of health technology in enhancing home-based pediatric palliative care, future research should address the limitations of current health technology and consider the opinions for information sharing between relevant healthcare team members, the child, and their family.

Background: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses. Methods: We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia. Results: Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare. Conclusions: This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings. [ABSTRACT FROM AUTHOR]

Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking. The application of general pediatric sleep recommendations appears insufficient to address the unique challenges of the PPC dimension in terms of disease variability, duration, comorbidities, complexity of needs, and particular features of sleep problems related to hospice care. Therefore, we initiated an international project aimed at establishing a multidisciplinary consensus. A two-round Delphi approach was adopted to develop recommendations in the areas of Definition, Assessment/Monitoring, and Treatment. After selecting a panel of 72 worldwide experts, consensus (defined as ≥75% agreement) was reached through an online survey. At the end of the two voting sessions, we obtained 53 consensus recommendations based on expert opinion on sleep problems in PPC. This study addresses the need to personalize sleep medicine's approach to the palliative care setting and its peculiarities. It provides the first international consensus on sleep problems in PPC and highlight the urgent need for global guidance to improve sleep-related distress in this vulnerable population and their caregivers. Our findings represent a crucial milestone that will hopefully enable the development of guidelines in the near future. [ABSTRACT FROM AUTHOR]

Introduction: Brazil is a developing and an Upper Middle Income, categorized by the World Bank. Therefore, it is a country that needs a special vision for children with oncological diseases who require Pediatric Palliative Care. This study aimed to understand the specificities of services that provide oncology services in comparison to those that do not provide oncological care. Methods: This is a descriptive, cross-sectional, and online survey study. A questionnaire was created by a multidisciplinary group of leaders from the Brazilian Pediatric Palliative Care Network and then the survey was distributed using a snowball strategy. Results: Of the 90 services that answered the questionnaire, 40 (44.4%) attended oncologic patients. The Southeast represented most of the services (57.57%), followed by the Northeast, with 18.89% (17 services), the South with 12.22% (11 services), and the Center West with 8.89% (8 services). No differences were observed in access to opioid prescriptions between the services. It was observed that those services that attended oncologic patients had a tendency to dedicate more time to Pediatric Palliative Care. Discussion: The distribution of services that cover oncology and those that do not, are similar in the different regions of Brazil. In Brazil, there are difficulties in accessing opioids in pediatrics: access to opioid prescriptions without differences revealed that even pediatric oncologists might have difficulty with this prescription, and this should improve. It is concluded that education in Pediatric Palliative Care is the key to improvements in the area. [ABSTRACT FROM AUTHOR]

Pediatric palliative care (PPC) is defined as "the active care of the child's body, quality of life, mind and spirit, also giving support to the family". PPC should be established once a diagnosis of life-limiting or life-threatening disease is reached and should continue as long as necessary. Therefore, pediatric palliative care (PPC) can continue for years, also given the improved care approaches for children with life-limiting or life-threatening diseases. Over time, the child may grow to become a young adult, and when this happens, the transition to adult healthcare services must be undertaken. This article discusses possible interventions, fostering an efficient transition from pediatric to adult palliative care. A narrative review presents issues, experiences, and existing programs. A "Perspectives" section presents opinions and proposals by the authors. The transition process is not limited to a change from pediatric to adult services. Rather, it includes the entire process of the development of the child and requires interdisciplinary management with proper planning and collaboration among professionals of pediatric and adult teams. [ABSTRACT FROM AUTHOR]

Background: Children with medical complexity (CMC) often require multiple medications, leading to polypharmacy, which seems to be linked to adverse effects, administration errors, and increased caregiver burden. This study aimed to describe the prevalence of polypharmacy, medication burden, off-label drug use, and associated costs. Methods: Conducted at the Pediatric Palliative Care Center of Padua, Italy, from August to October 2021, this cross-sectional observational study included patients up to 23 years old with at least one prescribed drug. Data were collected from medical records and caregiver interviews. Drug costs were collected from the Italian Medicine Agency. Descriptive statistical analysis was performed. For comparisons among categorical variables, the Chi-square test was used, and for those among continuous variables, the ANOVA test was used. Results: This study analyzed treatment regimens of 169 patients with a median age of 12.5 years (0.3–23). Polypharmacy was present in 52.7% of patients, and medication burden was observed in 44.4%, both varying significantly by primary diagnosis (p < 0.001). The median daily cost per patient was EUR 2.2 (IQR 0.9–7.1), with significant variation among subgroups. Only 34.6% of prescriptions were off-label. Conclusions: polypharmacy and medication burden are frequent among our CMC population, with some differences according to primary diagnosis. [ABSTRACT FROM AUTHOR]

Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional association's) moral stance. In pediatric healthcare settings, managing and mitigating feelings of moral distress can be particularly difficult to navigate through because of the intricate dynamics between the pediatric patient, parent and/or legal guardians, and clinicians. The proactive integration of an experienced pediatric palliative care (PPC) team can be an appropriate step toward reducing clinicians feeling overwhelmed by various case-specific and team management issues that contribute to the development of moral distress among healthcare professionals. Based on our experiences in a free-standing, quaternary pediatric hospital, the involvement of PPC can help reframe the approach to challenging situations, enhance communication, and provide guidance to the care team, patients, and families. Moreover, PPC teams can benefit other multidisciplinary team members through education on respecting the plurality of values of diverse families and patients and consideration of ethical implications during morally challenging situations. [ABSTRACT FROM AUTHOR]

Background: Only four centers in Egypt provide Palliative Care (PC) for adult cancer patients and one provides care for pediatric cancer patients. While PC is not widely utilized in Egypt, this study aims to assess patients' need for PC from the providers' perspective. The primary objectives were to assess providers' knowledge about PC, understand patients' needs, and compare children's and adults' needs for PC. Methods: A descriptive exploratory design was utilized. Patients were recruited from a cancer center in Qena Governorate, Egypt. All 108 nurses and physicians in the cancer center were interviewed to assess their perspectives about PC and patients' need for it. Results: Of the 108 care providers, more than 60% of the providers were not familiar with the concept of PC and did not participate in related activities, and more than 77% did not receive any training on the topic. All the providers reported there is no specific policy for end-of-life care. More than 60% of the providers responded that their patients do not need PC as the providers believe that PC provided only for end-stage patients. 50% of the providers see that PC has benefits such as pain relief and symptom management. No major differences were noted between pediatric and adult PC needs. Conclusion: The results of this study provide foundational evidence of providers' lack of experience with and understanding of palliative care. This deficit is creating a barrier to providing palliative care in Egypt. [ABSTRACT FROM AUTHOR]

Discovering some of the impact of the hidden curriculum (HC) while doing a postgraduate diploma in pediatric palliative care (PPC) in South Africa (SA), six graduates reflected on their formal and informal learning. To navigate the HC the transformative learning theory is used as a bridge connecting the formal and informal learning between interprofessional education where diversity is an enabler to enhance learning outcomes and shift perspectives to enhance patient care. The graduates were guided through the stages of the competency model to reflect on their learning experience. The authors believe that the experiential lessons reflected on, both clinical and psychosocial, can assist with not only strengthening the particular multidisciplinary needs of students, but also to align the HC and formal curricula. These lessons can also aid toward upscaling the need for PPC education in the SA context. [ABSTRACT FROM AUTHOR]

Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams. This special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues. Existing literature, consensus and policy statements, and recently developed competencies inform and provide evidence for the value of incorporating psychologists into PPC. As children with serious illness are at risk for mental and physical health symptoms, psychologists' specialized training in evidence-based assessment and intervention allows them to assess areas of concern, create treatment plans, and implement nonpharmacological therapies targeting symptom management and promotion of quality of life. By improving patient and family outcomes, psychology involvement saves money. In addition to clinical care, psychologists are skilled researchers, which can help to advance PPC interdisciplinary research. Lastly, psychologists can play a valuable role in contributing to PPC team education, dynamics, and well-being. With strong skills in research, clinical care, education, and advocacy, pediatric psychologists are exceptionally equipped to provide care to children with serious illness and their families. Given their unique contributions, it is critical future efforts are directed towards advocating for the inclusion of psychologists into PPC, with the ultimate goal of improving care for children with serious illness and their families. [ABSTRACT FROM AUTHOR]

Objectives: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate. This study investigated the impact of a complementary therapy, delivered by a pediatric psychologist and a nurse, on physical and psychological variables among nurses at the Paediatric Hospice of the Regina Margherita Children's Hospital in Italy. Methods: Thirty-five nurses participated in 5 weeks of Reiki sessions for an overall total of 175 sessions. The effect of the sessions was analyzed through a paired t -test analysis comparing the values of heart rate, oxygen saturation, and systolic and diastolic pressure collected before and after each session. The same test was conducted comparing the values of the 3 burnout subscales for each of the 35 nurses collected before the beginning of the first session with those collected at the end of the last session 2 months later. Results: Results underlined a positive short-term effect with a significant decrease in heart rate before and after each session (t = 11.5, p <.001) and in systolic pressure (t = 2, p <.05). In addition, a decrease in emotional exhaustion symptoms was found (t = 2.3, p <.05) at the end of the intervention. Significance of results: Reiki could be a valid strategy to complement traditional pediatric psychology clinical practice designed to protect HCPs from emotional and physical demands and to create a more supportive workplace for staff and patients alike. [ABSTRACT FROM AUTHOR]

Background: An important first step in enhancing professional palliative care training is to investigate the educational needs of pediatric clinicians in this field. The aims of this research were to analyze the extent of end-of-life care experience of Chinese pediatric clinicians and identify the differing educational needs of physicians and nurses as well as associated impact factors. Methods: A cross-sectional descriptive survey via a structural questionnaire was used in this research. Results: In total, 187 clinicians, comprising 52 physicians and 135 nurses, participated in this study. The topics "pain management", "symptom management", and "discussing the prognosis with family members" were the most expressed educational needs among both physicians and nurses. Compared to nurses, physicians placed greater emphasis on the importance of "communication" and "pain and symptom management" (p < 0.05). Clinicians with more extensive end-of-life care experience more strongly felt the importance of learning about pain management and communication regarding end-of-life care (p < 0.05). Conclusions: Research showed that the education currently provided to pediatric clinicians does not meet their distinctive needs. Future palliative care education must be a continuing multi-level, interdisciplinary program and different education should be provided to physicians and nurses based on their respective needs. [ABSTRACT FROM AUTHOR]

Background: In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support the provision of care. Research has highlighted the role of healthcare personnel when utilizing health technology in home-based pediatric palliative care, but specific knowledge of healthcare personnel's views on the technological relevance remains limited. Therefore, our study has explored potentials and limitations of health technology in home-based pediatric palliative care from the perspectives of healthcare personnel. Methods: Our study utilized a qualitative, descriptive, and exploratory design, including five focus groups with a total of 22 healthcare personnel. The participants were selected from various health regions in Norway and were experienced in providing home-based pediatric palliative care. Using reflexive thematic analysis, we interpreted data obtained from focus groups, identified patterns, and developed themes. Results: The analysis resulted in the development of three intersecting themes: balancing in-person interaction and time in home-based pediatric palliative care; exchange of information can improve timely and appropriate care; and the power of visual documentation in pediatric palliative care. The healthcare personnel acknowledged difficulties in fully replacing in-person interaction with health technology. However, they also emphasized potentials of health technology to facilitate information sharing and the ability to access a child's health record within interdisciplinary teams. Conclusion: The results underscored that technology can support pediatric palliative care but must be thoughtfully integrated to ensure an individualized patient-centered approach. To maximize the benefits of health technology in enhancing home-based pediatric palliative care, future research should address the limitations of current health technology and consider the opinions for information sharing between relevant healthcare team members, the child, and their family. [ABSTRACT FROM AUTHOR]

Background: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research collaboration initiative for children with palliative care needs was assembled in 2023. Building on this initiative, this paper presents an overview of pediatric palliative care (PPC) in the Nordic countries' (a) population characteristics, (b) care models and setting of care, (c) education and training, and (d) research. Methods: The Nordic initiative researchers collaboratively gathered and assessed available data on the characteristics of PPC within Denmark, Finland, Greenland, Iceland, Norway, the Faroe Islands, Sweden, and Åland. Data were compiled in a matrix with population characteristics, models- and setting of care, education and training, and areas of research in a Nordic context. The findings are narratively and descriptively presented, providing an overview of Nordic PPC. Results: In total, the Nordic child population comprises around six million children (0–19 years), of which about 41.200 are estimated to be living with a life-limiting and/or life-threatening condition. Healthcare services are provided through various care models, ranging from specialized care to homecare settings. Overall, there remain few opportunities for education and training with some exceptions. Also, Nordic research within PPC has been shown to be a growing field although much remains to be done. Conclusion: This overview is the first outline of the current PPC in Nordic countries. Although some differences remain important to acknowledge, overall, the strengths and challenges faced within PPC in the Nordic countries are comparable and call for joint action to increase evidence, services, and education to better serve the children, families, and healthcare personnel within PPC. Despite the varying structural premises for PPC, research endeavors aiming to provide evidence in this field seem increasing, timely and relevant for the Nordic countries, as well as the international context. [ABSTRACT FROM AUTHOR]

AimTo study Swedish pediatric oncologists’ practical and emotional experiences of referring, including and/or treating children in early-phase clinical trials.MethodsA nationwide study was conducted using a mixed-method approach. Structured interviews based on a study-specific questionnaire and participants’ personal reflections were utilized. Survey responses were analyzed using descriptive statistics, while participants’ comments were analyzed using thematic analysis. All interviews were recorded and transcribed verbatim.ResultsIn total, 29 physicians with 4 to 32 years of experience in pediatric oncology participated, with 19 (66%) having > 10 years of experience. Three themes appeared: 1) Optimization-based approach focused on finding the most suitable treatment and care for every child with a refractory/relapsed cancer eligible for an early-phase clinical trial; 2) Team-based approach aimed at establishing local and national consensus in decision-making for treatment options, including early-phase clinical trials and palliative care; 3) Family-based approach in which the physicians provided families with actionable information, listened to their desires, and endeavored to maintain hope in challenging circumstances. Several participants (40% with ≤ 10 years of experience and 58% with > 10 years of experience) viewed the early-phase clinical trial as a potential “chance of cure”. A majority (80%) of physicians with ≤ 10 years of experience, reported that they often or always felt personally and emotionally affected by communication regarding early-phase clinical trials. Delivering difficult news in cases of uncertain prognosis was identified as the major challenge. None of the study participants felt adequately prepared in terms of sufficient knowledge and experience regarding early-phase clinical trials. The physicians expressed a need for guidance and training in communication to address these challenges.ConclusionsWorking with early-phase clinical trials highlight a field where physicians cannot solely rely on their expertise or past experiences, and where they are likely to be deeply emotionally involved. Physicians who care for children eligible for such studies require targeted educational initiatives and supervision.

Abstract Background Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child’s QoL, less is known about parents’ experiences of their own QoL. The aim of this study was to explore parents’ QoL when their child has a life-threatening or life-limiting condition. Methods The study has a qualitative, hermeneutic phenomenological design inspired by van Manen’s phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents’ lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data. Results The findings describe four themes related to parents’ QoL: living a normal life, giving my child a good life, having time to fulfill siblings’ needs, and feeling heard and respected in the health and social care system. Conclusions The complexity of elements shaping parents’ QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL.

Abstract Background As pediatricians play a vital role in pediatric palliative care (PPC), understanding their perspectives toward PPC is important. PPC is established for a long time in Belgium, but has a shorter tradition in China, although it is growing in the last decade. Sampling and comparing the perspectives of these pediatricians could be insightful for both countries. Therefore, we sampled and compared perspectives of pediatricians in China and Belgium toward PPC, and explored factors influencing their perspectives. Methods We conducted a cross-sectional online survey using the validated Pediatric Palliative Care Attitude Scale (PPCAS). Over a five-month period, we recruited pediatricians practicing in China (C) and Flanders (F), Belgium. Convenience sampling and snowballing were used. We analyzed data with descriptive statistics, and evaluated group differences with univariate, multivariate and correlation tests. Results 440 complete surveys were analyzed (F: 115; C: 325). Pediatricians in both regions had limited PPC experience (F: 2.92 ± 0.94; C: 2.76 ± 0.92). Compared to Flemish pediatricians, Chinese pediatricians perceived receiving less unit support (F: 3.42 ± 0.86; C: 2.80 ± 0.89); perceived PPC less important (F: 4.70 ± 0.79; C: 4.18 ± 0.94); and faced more personal obstacles while practicing PPC (F: 3.50 ± 0.76; C: 2.25 ± 0.58). Also, select socio-demographic characteristics (e.g., experiences caring for children with life-threatening condition and providing PPC) influenced pediatricians’ perspectives. Correlational analyses revealed that pediatricians’ PPC experiences significantly correlated with perceived unit support (ρF = 0.454; ρC=0.661). Conclusions Chinese pediatricians faced more barriers in practicing PPC. Expanding PPC experiences can influence pediatricians’ perspectives positively, which may be beneficial for the child and their family.