Hospice Care For Children Research Articles

The Home-Based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of Psychometric Properties

ContextHome-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S. Ensuring equitable, high-quality home-based PPHC for all children requires the evaluation of families’ care experiences and assessment of whether these experiences are aligned with their needs and priorities. ObjectivesTo evaluate the psychometric properties of the previously developed 23-item home-based PPHC EXPERIENCE Measure for use with families of children receiving home-based PPHC in the United States. MethodsParticipants included families recruited from the Children's Hospital of Philadelphia, Courageous Parents Network, and several other hospital- and community-based PPHC programs across the U.S. who provide home-based PPHC services. Participants completed the EXPERIENCE Measure at baseline and again at retest. We evaluated the factor structure of the EXPERIENCE Measure, as well as evidence regarding score reliability and validity. ResultsEighty-two family participants completed the baseline and 53 completed the retest questionnaire from 15 states across the U.S. We found evidence for the score reliability and validity of a four-domain EXPERIENCE measure. ConclusionThe EXPERIENCE Measure is a tool with evidence for reliable and valid scores to evaluate family-reported home-based PPHC experiences at the time care is being received. Future work will evaluate the usability (i.e., acceptability, feasibility, and clinical actionability) of EXPERIENCE, including the sensitivity of the instrument to change over time and its impact on real-time clinical actions.

State of the Service: Pediatric Palliative and Hospice Community-Based Service Coverage in the United States.

Background: The pediatric literature describes reliance on community-based organizations for home-based palliative and hospice care for children. Objective: To quantify and describe the inclusion of children in services, staffing, and care scope offered by community-based hospice organizations in the United States. Design and Subjects: This study utilized an online survey distributed to organizational members of the National Hospice and Palliative Care Organization (NHPCO) in the United States. Results: A total of 481 hospice organizations from 50 states, Washington DC, and Puerto Rico responded. Twenty percent do not provide services for children. Nonmetro geographies are less likely to provide services for children. Pediatric services provided include home-based pediatric hospice (57%), home-based palliative care (31%), inpatient pediatric hospice (23%), and inpatient pediatric palliative care (14%). Hospice annual pediatric census is an average of 16.5 children, while palliative care annual census is an average of 36. Less than half (48%) of responding agencies have a team that is dedicated to only pediatric care. Medicaid and the Children's Health Insurance Program are the most common forms of reimbursement, with 13% depicting "no reimbursement" for provision of care for children and many relying on philanthropy coverage. Lack of trained personnel, discomfort, and competing priorities were depicted as the most common barriers. Conclusions: Children remain underrepresented in the extension of care offered through community-based hospice organizations in the United States particularly in nonmetro settings. Further research into strong training, staffing, and reimbursement models is warranted.

Актуальні питання підготовки медичних сестер з паліативної допомоги

Purpose - to improve the quality of nurses training at the undergraduate and postgraduate levels by developing students' motivation, creating and improving curricula and introducing new methods of teaching palliative and hospice care. Materials and methods. Development of the teaching methodology for the palliative care nurses training; organization of the corresponding nurses training at the undergraduate and postgraduate levels; organization of the student volunteer movement to develop work motivation in the field of palliative medicine. Results. Every effort should be made to help and ensure a decent quality of life, to alleviate pain and suffering for terminally ill patients and their loved ones. Therefore, qualified nurses education is one of the priorities for successful development of palliative care. Conclusions. Thus, it is necessary: to shape students’ motivation through better awareness of future professional activity in the field of palliative care; to improve the quality of palliative care and motivate health professionals to study and work, there should be an introduction to the nomenclature of specialties of nurses specialization and specialization «Palliative Medicine»; to introduce the obligatory cycle on palliative care in the list of students’ practices at health facilities for terminally ill patients; to increase the number of hours devoted to studying this discipline and introduce the topic of palliative and hospice care for children. No conflict of interests was declared by the authors.

The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey.

Perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life-limiting or life-threatening condition. Little is understood about the role of children's hospice care and how it contributes to effective perinatal palliative care. The study aims to answer the question "what is the role of children's hospices in the provision of perinatal palliative care and advance care planning in the United Kingdom?" An electronic survey was sent to all 54 children's hospices in the United Kingdom between May and June 2022. Thirty hospices responded, representing 54% of the sector. All regions of all four counties are represented. Numbers of referrals to hospices for perinatal palliative care have increased significantly over the last 5 years. Hospices provide a range of services for families and babies, usually from the point of diagnosis or recognition of a life-limiting or life-threatening condition, underpinned with counseling and emotional support. Hospices worked with a range of professionals and services, most commonly fetal medicine and neonatal services. Advance care plans were an important element of effective perinatal palliative care, strengthening parent-professional and interprofessional relationships. Children's hospice services play an important and growing role in the perinatal care of babies and families following the diagnosis or recognition of a life-limiting or life-threatening condition. The family-centered approach to care, from a broad, biopsychosocial perspective means that hospices make a unique and meaningful contribution to both the clinical and psychological needs of families. The family-centered approach to care, from a broad, biopsychosocial perspective means that hospices make an important contribution to both the clinical needs of babies, and psychological needs of families antenatally, in the neonatal period and after death.

Forecasting the need for palliative and hospice care in Ukraine for 2021–2022

Calculating the need for palliative and hospice care (PHC) is one of the most important aspects of planning national and regional budgets in the field of healthcare for terminally ill patients. According to our calculations, made in accordance with the methodology of the Ukrainian Center for Public Data, in 2018–2020 such a need gradually decreased both among the adult population and among children (from 258,207 in 2018 to 213,739 in 2020 among adults, and from 65,906 to 49,000 among children respectively). However, according to the calculation, the need was still several times higher than the assistance financed by the National Health Service of Ukraine (NHSHU) according to the applications of hospitals submitted to the NHSHU. The conducted research made it possible to clarify the calculation we made earlier and perform forecasting using the trend method for 2021 and 2022. Taking into account the downward trend in need, in 2021 the projected need was 194,537 among adults and 48,261 among children. In 2022, the projected need was 172,303 among adults and 45,517 among children. The marked gradual decrease in both the calculated (in 2018–2020) and predicted (in 2021 and 2022) need for PHC for adults and children, which, unfortunately, we do not associate with the decrease in morbidity associated with the establishment of palliative diagnoses, but with a decrease in the quality of the collection of medical statistical information, on which the calculation of the need for medical assistance is based. The analysis of the forecasting results can be refined in the future according to the forecasts of the number of diseases among adults and children, respectively, for the following years for diseases that correspond to the palliative diagnoses of the calculation. The performed forecasting is the basis for planning the financing of the health care sector. Keywords: palliative and hospice care for children, palliative and hospice care for adults, trend forecasting.

Паліативна та хоспісна допомога дітям

Актуальність. Паліативна та хоспісна допомога дітям є як філософією, так і методом організації надання індивідуалізованої допомоги дітям із життєво-загрозливими порушеннями. Її метою є підвищення якості життя для невиліковно хворих дітей та їх сімей, попередження та/або мінімізація страждань, оптимізація функціонування організму хворої дитини, надання можливостей для персонального й духовного зростання. Наприклад, у США приблизно 44 тисячі дітей помирають за рік, більшості з них ніколи б не була надана хоспісна допомога. Водночас серед дітей, які потребують такої допомоги, менше 10 % користуються нею наприкінці життя. Мета. Привернення уваги суспільства (та медичної спільноти, зокрема) до необхідності створення достатньої кількості сервісів (центрів) паліативної та хоспісної допомоги дітям, а також наведення прикладу роботи мобільного хоспісу для дітей у Західноукраїнському дитячому спеціалізованому медичному центрі. Результати. Вже шість років працівники Західноукраїнського спеціалізованого дитячого медичного центру на волонтерських засадах опікуються невиліковно хворими дітьми вдома, які були госпіталізовані у відділення анестезіології та інтенсивної терапії у критичному стані і за умови стабілізації стану виписані, а батьків навчають догляду за тяжкохворими дітьми в домашніх умовах. Це насамперед діти з тяжкими вродженими вадами, що не підлягають корекції, з тяжкими органічними ураженнями центральної нервової системи, прогресуючими неврологічними захворюваннями (міастеніями), онкологічними захворюваннями, що не піддаються специфічному лікуванню, генетичними захворюваннями (синдромом Вердніга — Гоффмана, синдромом Едвардса тощо). Основними критеріями нашої співпраці з родинами невиліковно хворих дітей є життя без болю та інших тяжких симптомів, допомога сім’ї, увага та повага, індивідуальний підхід. У січні 2017 року завдяки активності суспільства, партнерській співпраці нам в умовах обмежених ресурсів вдалося створити у Західноукраїнському дитячому спеціалізованому медичному центрі відділення «Мобільний хоспіс для дітей». Сьогодні пацієнтами хоспісу є 26 дітей, які мешкають у різних населених пунктах Львівщини. Чотирнадцять дітей дихають через трахеостому, семеро з них — завдяки портативним апаратам штучної вентиляції легень у режимі допоміжної вентиляції (SIMV + PSV). Вісім наших пацієнтів харчуються спеціальними сумішами через гастростому. Першими в Україні ми почали використовувати такий метод харчування дітей у паліативній терапії. Проте у Львівській області щорічно потребують паліативної допомоги 40–50 дітей. Створення відділення «Мобільний хоспіс для дітей» буде забезпечувати реалізацію мультидисциплінарного підходу до надання паліативної допомоги дітям у всіх його аспектах. Висновки. Паліативна та хоспісна допомога передбачає мультидисциплінарний підхід у лікуванні дитини з обмеженою тривалістю життя внаслідок невиліковного захворювання та спрямована на поліпшення якості життя дитини з тяжкими хронічними захворюваннями, а також на підтримку сім’ї.

The need for palliative and hospice care in Ukraine in 2018–2020

The provision of palliative and hospice care (PHC) is associated with significant material costs of the budgetary funding of countries, provided that these countries pay the necessary attention to these types of care. Ukraine strives for a model of increasing PHC coverage of those categories of patients recommended by WHO as best practices. This is especially important in the context of the growing number of patients in need of PHC both in Ukraine and around the world. The purpose of the study is to determine the need for the main types of PHC for the population of Ukraine in 2018–2020 according to the methodology proposed by the Ukrainian Center for Public Data. The methodology involves the use of data from national statistics centers (the State Statistics Service of Ukraine and the Center for Medical Statistics of the Ministry of Health of Ukraine), national cancer and tuberculosis registries (mainly on the number of deaths and those discharged from hospitals with the corresponding diagnosis), to which empirical coefficients from 0.2 to 0.9 are applied, determined by experts. As a result of the research, we determined the absolute values and trends regarding the need for the main PHC types for adults and children of Ukraine in 2018–2020. The need in absolute values among adults was 227,143; 212,199 and 190,179; among children – 61,355; 49,002 and 45,357; respectively. The greatest need for PHC among adults during this period was noted for malignant neoplasms and cardiovascular diseases, and among children – for congenital malformations, certain perinatal conditions, cerebral palsy, and malignant neoplasms. The overall need for PHC had a steady downward trend both among adults (by 16.27%) and among children (by 26.07%). The largest relative declines among adults during this period were recorded for rheumatoid arthritis, diabetes, and HIV/AIDS, and among children – for congenital malformations, inflammatory diseases of the central nervous system, and cardiovascular diseases. Keywords: palliative and hospice care for children, palliative and hospice care for adults, PHC, state medical statistics.

Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach

BackgroundMany children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families.MethodsWe developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4).ResultsItems were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include “The care team treats my child’s physical symptoms so that my child has as good a quality of life as possible”, “I have regular access to on-call services from our care team”, and “The nurses have the knowledge, skills, and experience to support my child’s palliative or hospice care at home.”ConclusionsThe EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams.

Inspiration, innovation and integration: highlights from the third ICPCN conference on children's palliative care, 30 May to 2 June 2018, Durban, South Africa.

The International Children’s Palliative Care Network (ICPCN) held its third international conference on children’s palliative care in Durban, South Africa, from May 30 2018 to 2 June 2018. The conference—inspiration, innovation and integration—brought together 250 participants from 41 countries and was held in conjunction with local partners—Umduduzi Hospice Care for Children, Palliative Treatment for Children South Africa (Patch SA) and the Hospice and Palliative Care Association of South Africa. It built on national and global developments in palliative care such as its inclusion in Universal health coverage (UHC), the Lancet Commission report on pain and palliative care and the sustainable development goals (SDGs), and aimed to raise the profile of children’s palliative care in KwaZulu-Natal (KZN) and nationally. Seven pre-conference workshops were held prior to the conference on topics such as pain and symptom management, children’s palliative care within a humanitarian crisis, perinatal palliative care, research, developing programmes, ethical issues and difficult conversations in children’s palliative care. Delegates were welcomed in true Durban style at the welcome reception hosted by the City of Durban and uShaka Marine World. The opening plenary included entertainment from the Open Air School and Hillcrest Primary School, and inspirational talks from the Member of the Executive Council (MEC) for Health, a representative of the World Health Organization (WHO), the Chief Executive of ICPCN and the Noble Peace Prize Nominee Dr MR Rajagopal from Pallium India. Plenary sessions were interspersed throughout the conference with 56 oral concurrent presentations and workshops, six ‘Meet the expert sessions’ 100 poster presentations and the South African Premier of the film ‘Hippocratic: 18 Experiments in gently shaking the world’. There was a great feeling of networking and learning throughout the conference, with the conference being well evaluated, and an increase in the level of presentations and research from previous conferences demonstrating the steps that are being taken in children’s palliative care globally.

'Place bonding' in children's hospice care: a qualitative study.

Limited knowledge exists of parents' perceptions and experiences of children's hospices and how these contribute to the varied access and uptake of services. This study aimed to explore parents' perspectives and experiences of a hospice, to understand the barriers and/or facilitators to accessing a hospice, and what characteristics parents wanted from hospice provision. A two-phase qualitative study underpinned by a constructivist grounded theory methodology was employed. Phase 1 used focus groups to collect data from parents of children already accessing the hospice (n=24). Phase 2 used in-depth semistructured interviews with parents of children who did not use the hospice (n=7) and with parents who had previous experience of using a hospice (n=7). A grounded theory of place bonding was developed which illustrates the cognitive journey taken by parents of children with life-limiting conditions considering/receiving hospice care for their child. Finding a place where they belonged and felt at 'home' made the decision to accept help in caring for their child with a life-limiting condition more acceptable. The theory of place bonding offers children's hospices a new perspective from which to view how parents access, accept and build relationships at the hospice.

Zaspokajanie potrzeb psychicznych dzieci korzystających z opieki hospicjum

This article is an inspiration to deeper analysis of satisfying psychological needs of children benefiting from hospice care for children, which are struggling with the enormity of the disease. It was showed a general definition of the needs and describes the most important psychological needs, such as the need for security, discretion, pay attention, meaning, contact, membership, cognitive, beautiful, positive self-esteem and sense of values, which meet the dreams of every child. It was showed the outline of palliative care for children. Moreover, they presented the conclusions from interviews conducted among caregivers, according to which, inter alia, that meet the needs of mental positively affects the well-being of a sick child and contributes to increase the quality of life.

O architekturze umacniania w opiece hospicyjnej nad dzieckiem jako wyzwaniu dla pracy socjalnej

Istotą pracy socjalnej jest troska o drugiego człowieka, jego dobro, wsparcie i pomoc w rozwiązywaniu życiowych problemów. Charakter niesienia pomocy jest jednak uzależniony od przyjętej przez daną grupę społeczną perspektywy pomagania, a co za tym idzie – uruchomienia zintegrowanego systemu wraz z jego infrastrukturą, kadrą zawodową oraz kanonem uprawnień i przywilejów. W polu pracy socjalnej z dzieckiem terminalnie chorym coraz częściej wykorzystywane jest podejście umacniania (empowerment). Jego dopełnienie stanowią dwie koncepcje: resilience, ułatwiająca zrozumienie mechanizmów pozytywnej adaptacji małego pacjenta i jego opiekunów w obliczu choroby, oraz dezintegracji pozytywnej, nastawionej na usankcjonowanie uprawnień i przywilejów dla tej grupy społecznej (chory terminalnie pacjent i jego opiekunowie), która ze względu na swoją sytuację osobistą ma ograniczone możliwości doświadczania pełni życia. Wymienione podejścia mogą być przydatne w budowaniu relacji terapeutyczno-pomocowej z dzieckiem w opiece hospicyjnej. Niemniej jednak ich stosowanie w praktyce pracy socjalnej wymaga od profesjonalistów uważności oraz umiejętnego zaangażowania samego dziecka w proces zmiany ukierunkowanej na poprawę jakości życia jego i opiekunów.

Children with intellectual disability and hospice utilization.

Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization. Using a retrospective cohort design and data from the 2009 to 2010 California Medicaid claims files, we conducted a multivariate analysis of hospice utilization. This study shows that intellectual disability was negatively related to hospice enrollment and length of stay. We also found that when children had both intellectual disability and comorbidities, there was a positive association with enrolling in hospice care. A number of clinical implications can be drawn from the study findings that hospice and palliative care nurses use to improve their clinical practice of caring for children with ID and their families at end of life.

Short break and emergency respite care: what options for young people with life-limiting conditions?

Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care. To explore alternative short break and emergency respite care options to children's hospice care. A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only. There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria. Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices.

Hospice Care for Children With Cancer: Where Do These Children Die?

Hospice is an important provider of end of life care; many children who die of cancer enroll in hospice programs. How frequently such children remain in hospice to die at home, or disenroll from hospice and die in the hospital, has not been described. A child's location of death has important implications for quality of life and parental adaptation. This represents a subanalysis of a retrospective study of 202 consecutive oncology patients who died at a single center between January 1, 2006 and December 31, 2010. Of 95 children who enrolled in hospice, 82 had known location of death. Sixty (73%) died at home or an inpatient hospice unit, 15 (18%) died in the oncology unit, 5 (6%) died in the intensive care unit, and 2 (2%) died in the emergency department. The median length of hospice services was 41 days, twice the national median of 21 days reported in adults. One quarter of children disenrolled from hospice care, ultimately dying in an acute care setting. Further studies are warranted to explore the hospice experience in children, and to address modifiable factors that may impact a family's choice to withdraw from hospice care.

Principy poskytování paliativní a hospicové péče u dětí

Paliativni pece se obecně definuje jako komplexni osetřovatelska a lecebna pece o nevylecitelně nemocne, ktere soucasna medicina nedokaže uzdravit. Tato pece se dospělým pacientům nejcastěji poskytuje v hospicich nebo na nemocnicnich oddělenich, ktera jsou pro tuto peci přizpůsobena a vybavena jak technologickým zazemim, tak personalnim obsazenim z řad odborniků. V soucasnosti můžeme řici, že v každem kraji Ceske republiky funguje hospicove zařizeni, ktere poskytuje paliativni a hospicovou peci nevylecitelně nemocným. Pacientům a jejich rodinam je zde poskytnuta služba specializovane paliativni pece.Mezi važně a nevylecitelně nemocne vsak patři i děti. Bohužel na tom nic nezměni ani obecně miněne přani, že děti by neměly umirat. Stale se ve vsech věkových kategoriich vyskytuji onemocněni, ktera soucasna medicina nedokaže vylecit. Tyto děti jsou v nasich podminkach nejcastěji hospitalizovany v nemocnicnich zařizenich. Zde se jim osetřujici personal snaži tuto specializovanou peci poskytovat. V Ceske republice se v soucasne době teto problematice ve zdravotně socialni rovině nejvice věnuje Nadacni fond Klicek, který take spravuje jedine hospicove zařizeni pro děti na uzemi Ceske republiky.Clanek se snaži objasnit principy poskytovani paliativni a hospicove pece dětem, ktere vychazeji z poznatků pece o dospěle. Ackoliv jsou si zakladni principy velmi podobne, v urcitých aspektech jsou naopak odlisne a plně specificke jen pro pediatricke pacienty a jejich rodiny.

Seeing is believing – Reducing misconceptions about children's hospice care through effective teaching with undergraduate nursing students

Children's palliative care has evolved in recent years and is now recognised as a distinct area of health and social care practice. Whilst children's hospices are viewed as central to quality care for these children and families, lack of knowledge regarding the exact nature of care they provide exists. Education can go part way to changing attitudes and knowledge about the key contribution of hospices, thus improving future care. Alternative and innovative strategies to stimulate meaningful learning are pivotal to children's nurse education and this paper examines one such innovation adopted with 2nd year children's nursing students. Aiming to help students explore the ethos of children's hospice an educational visit was arranged, followed by an on line discussion. Although some practical challenges were encountered, the visit heightened student awareness moving them from the readily held perception that children's hospices were exclusively for dying children and was viewed by students as more effective than a traditional classroom session.

A model of care in a children's hospice – report on an independent evaluation

This paper reports on a Department of Health funded independent evaluation of a Children's Hospice service model. Over 150 stakeholders; hospice staff, representatives from external agencies, children, young people and...

Hospice Care for Children

Hospice Care for Children

Thinking aloud about palliative care

The author offers some thoughts from the practice of hospice care for children in Belarus, where conditions are different from those in the majority of European countries. There is a brief sketch of the work of the Belarusian Children’s Hospice.