Pediatric Palliative Home Care Research Articles

Psychosocial Well-Being of Siblings of Pediatric Patients in Palliative Home Care.

Despite the proposed high burden of siblings of children and adolescents with life-limiting conditions receiving pediatric palliative care (PPC) at home, little is known about their psychosocial well-being. In this prospective, cross-sectional trial siblings of patients of a large pediatric palliative home care team were asked to answer the KINDL survey of health-related quality of life, the strengths and difficulties questionnaire (SDQ) to assess problems and resources of children and adolescents as well as the LARES questionnaire, a potential tool for early screening of distress in siblings of chronically ill children. The results of the KINDL total and subdomains as well of the SDQ-subdomains were compared to recent German normative data using multiple t-tests. In total, 44 siblings (28 female; age 7-18 years, mean 11.8 ± 3.03) of 29 families participated in this study. The subgroup which matches the age range of current normative data of 11-17 years old siblings (n=25) reported a significant lower total quality of life as measured by KINDL in comparison to normative data. Subscale analyses revealed a significant lower physical and psychological well-being and self-esteem. Siblings of PPC patients yielded significant higher scores in the subdomain prosocial behavior compared to normative data as measured by the SDQ. Siblings of children receiving PPC in a home care setting are at risk for a relevant impairment of their health-related quality of life. Future studies should address the potential for possible interventions specific for this population-at-risk.

Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care.

Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC.

The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team.

The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers' field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.

Home care needs of paediatric palliative patients perceived by professionals: A grounded theory

ObjectiveTo explore the elements involved in the process of paediatric palliative home care in the Spanish context according to the opinion of professionals. MethodQualitative study based on Grounded Theory, adjusted to COREQ standards, using theoretical sampling with in-depth interviews (June 2021–February 2022) with paediatricians, paediatric nurses and social workers from paediatric palliative care units in Spain, excluding professionals with less than 1 years’ experience. Interviews were recorded and transcribed literally for coding and categorisation through a constant comparative process of code co-occurrence until data saturation using Atlas-Ti®. The anonymity of the informants has been guaranteed by using pseudonyms after approval by the Research Ethics Committee of the Hospital Universitario de Gran Canaria Doctor Negrín (Las Palmas, Canary Islands) with registration number 2021-403-1. Results18 interviews were conducted and 990 quotes were grouped into 22 categories of analysis and structured into four thematic groups (care, environment, patient and family, and professionals). The findings showed a holistic view emphasising the need to organise and integrate the factors involved in the home-based approach to paediatric palliative home care. ConclusionsIn our context, the home environment meets appropriate conditions for the development of paediatric palliative care. The categories of analysis identified establish a starting point for further deepening the approach from the thematic areas involved: care, the environment, the patient and family, and professionals.

Cardiopulmonary resuscitation in pediatric patients under palliative home care - A multicenter retrospective study.

Introduction: Patients under palliative home care have special needs for their end-of-life support, which in general does not automatically include cardiopulmonary resuscitation. However, emergency medical services (EMS) respond to emergencies in children under palliative care that lead to cardiopulmonary resuscitation. To understand the underlying steps of decision-making, this retrospective, cross-sectional, multicenter study aimed to analyze pediatric patients under palliative home care who had been resuscitated. Methods: This study included patients from three spezialized pediatric palliative home care (SHPC) teams. The primary study parameters were the prevalence of cardiopulmonary resuscitation and the decision-making for carrying out pediatric advanced life support (PALS). Further analyses included the causes of cardiac arrest, the type of CPR (basic life support, advanced life support), the patient´s outcome, and involvement of the SHPC in the resuscitation. Descriptive statistical analysis was performed. Results: In total, 880 pediatric patients under palliative home care were included over 8.5 years, of which 17 patients were resuscitated once and two patients twice (overall, 19 events with CPR, 21.6 per 1,000 cases). In 10 of the 19 incidents (52.6%), cardiac arrest occurred suddenly without being predictable. The causes of cardiac arrest varied widely. PALS was performed in 78.9% of the cases by EMS teams. In 12 of 19 events (63.2%) resuscitation was performed on explicit wish of the parents. However, from a medical point of view, only four resuscitation attempts were reasonable. In total 7 of 17 (41.2%) patients survived cardiac arrest with a comparable quality of life. Discussion: Overall, resuscitation attempts were rare events in children under home palliative therapy, but if they occur, EMS are often the primary caregivers. Most resuscitation attempts occurred on explicit wish of the parents independently of the meaningfulness of the medical procedure. Despite the presence of a life-limiting disease, survival with a similar quality was achieved in one third of all resuscitated patients. This study indicates that EMS should be trained for advanced life support in children under home palliative therapy and SHPC should address the scenario of cardiac arrest also in early stages of palliative treatment. These results underline that advance care planning for these children is urgently needed.

Expert survey on coverage and characteristics of pediatric palliative care in Europe – a focus on home care

BackgroundFor children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries.MethodsOnline survey with in-country experts from N = 33 European countries.ResultsPediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service.ConclusionsPediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.

Advance care planning and the parental geographical background in pediatric palliative home care: a retrospective chart review

The relevance to acknowledge the parental migration history in pediatric palliative care is widely recognized. However, its influence on integral parts of advance care planning (ACP) is unknown. In this non-interventional cohort study, we aimed at identifying systematic differences between pediatric palliative patients with varying parental countries of origin regarding medical orders for life-sustaining treatment and the location of patients’ death. Two hundred eighty-eight pediatric cases in an ambulant pediatric palliative care setting in Germany were retrospectively analyzed using multinomial logistic regression models. Agreements on medical orders for life-sustaining treatment (MOLST) differed significantly between patients with varying parental countries of origin. Full code orders for life-sustaining treatment were made more often in Turkish families than in German families. There were no significant associations between the patients’ location of death and the parental countries of origin. However, confounder-analysis revealed a strong association between the patients’ underlying disease and the orders for life-sustaining treatment as well as the location of death.Conclusions: Even this study indicates that the parental geographical background as an important sociocultural aspect might have an impact on ACP decisions for children and adolescents with life-limiting conditions, other factors as the patients’ underlying disease can be more crucial for decision making in pediatric palliative care. The reason for the differences found might lay in cultural preferences or barriers to appropriate care. The inclusion of sociocultural aspects in decision-making is crucial to guarantee culture-sensitive, patient-centered pediatric palliative care.What is Known:• Decision making processes in pediatric palliative care are influenced by various cultural and religious norms.• So far, there is little knowledge about tangible differences with regard to end-of-life care decisions according to the geographical background of parents.What is New:• End-of-life care decisions varied significantly with the parental country of origin.• Other factors as the underlying disease may be more crucial for decision making in pediatric palliative care.

Palliative care in 9 children with neurodegeneration with brain iron accumulation.

AimEvaluation of pediatric palliative home care of families with children suffering from neurodegeneration with brain iron accumulation (NBIA) and their parents.Material and methodsThe children were treated at home by a multidisciplinary team. Densitometry was used to evaluate the condition of the skeletal system. Botulinum toxin was injected into the muscles in doses between 22 and 50 units/kg. The quality of palliative care was assessed on the basis of a specially designed questionnaire for parents.ResultsThe observations were performed on a group of 9 patients with NBIA. On admission, the median age of patients was 9 years (7–14). The average time of palliative home care was 1569 days (34 days–17 years). The median age at death (6 patients) was 11 years (7–15). The botulinum toxin injections gave the following results: reduction of spasticity and dystonia, reduction of spine and chest deformation, relief of pain and suffering, facilitation of rehabilitation and nursing, prevention of permanent contractures, and reduction of excessive salivation. Bone mineral density and bone strength index were reduced. Two patients experienced pathological fracture of the femur. The body mass index at admission varied between 9.8 and 14.9. In 7 cases, introduction of a ketogenic diet resulted in the increase of body mass and height. The ketogenic diet did not worsen the neurological symptoms. The parents positively evaluated the quality of care.ConclusionPalliative home care is the optimal form of treatment for children with NBIA.

The Lack of Systematic Training for Health Care Providers, A Challenge for Providing Pediatric Palliative Home Care: A Comparative Study

Background: The growing prevalence of chronic diseases in children has increased their need for palliative care. We aimed to compare pediatric palliative care and home care training in Iran and in the selected countries. Materials and Methods: This comparative study was conducted based on the classifications of palliative care for children and using databases such as Scopus, Science Direct, Ovid, ProQuest and Medline, websites affiliated with communities and associated with palliative care and home care services and according to the framework of World Health Organization’s Public Health Road Map. The selected countries consist of England, Canada, Australia and South Africa, where home care services are provided for children in addition to palliative care. Results There is a pediatric palliative care training program for doctors in the selected countries. Home care is part of these programs in these countries. Despite the lack of an independent nursing course in postgraduate education in England, Canada, and Australia, community health nurses are responsible for providing care responsible to provide care for children with life-threatening diseases in the community and at home. In South Africa, a home-based palliative care training and support package for children was designed for community care workers. In Iran, pediatric palliative care is in the early stages and home care is evolving as a need. Conclusion Education is the most important factor for integrating home care and pediatric palliative care into the health system. In countries with advanced pediatric palliative care, the knowledge and skills of care providers have been considered. In Iran, revising medical and nursing curriculums and the integration of palliative care and home care programs into the curriculum are essential.

Challenges of palliative care in children with inborn metabolic diseases

BackgroundOur objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a large specialized PPC team.ResultsBetween 01/2013 and 09/2016, 198 children, adolescents and young adults were in the care of our PPC team. Twenty-nine (14.6%) of these patients had metabolic conditions. Median age at referral was 2.6 years (0–24), median duration of care 352 days (3–2248) and median number of home visits 13 (1–80). Most patients are still alive (16; 55.2%). Median number of drugs administered was 5 (range 0–12), antiepileptics were given most frequently.Symptom burden was high in all children with metabolic disorders at referral and remained high throughout care. Predominant symptoms were gastrointestinal, respiratory and neurologic symptoms.Children with metabolic conditions, who were referred to PPC younger than 1 year of age had a shorter period of care and died earlier compared to those children, who were referred to PPC later in their lives (older than 10 years of age).Eleven (37.9%) of the children initially had no resuscitation restrictions and 7 (53.8%) of those who died, did so on ICU.ConclusionsAbout 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.

Pediatric Patients Receiving Specialized Palliative Home Care According to German Law: A Prospective Multicenter Cohort Study.

In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic and clinical characteristics of children referred to SPPHC and to compare patients with cancer and non-cancer conditions. The prospective multicenter study includes data on 75 children (median age 7.7 years, 50.7% male). The majority had non-cancer conditions (72%). The most common symptoms were cognitive impairment, somatic pain, impairment in communication or swallowing difficulties. Swallowing difficulties, seizures, and spasticity occurred significantly more often in non-cancer patients (p < 0.01). Cancer patients received antiemetics significantly more often (permanent and on demand) than non-cancer patients (p < 0.01). Significantly more non-cancer patients had some type of feeding tube (57.3%) or received oxygen (33.3%) (p < 0.01). Central venous catheters had been fitted in 20% of the patients, mostly in cancer patients (p < 0.001). Tracheostomy tubes (9.3%) or ventilation (14.7%) were only used in non-cancer patients. In conclusion, patients referred to SPPHC are a diverse cohort with complex conditions including a large range of neurologically originating symptoms. The care of pediatric palliative care patients with cancer is different to the care of non-cancer patients.

Advance care planning and outcome in pediatric palliative home care.

Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families’ preferences. To expand our knowledge of advance care planning and “medical orders for life-sustaining treatment” (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four “Together for Short Lives” (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients’ places of death.The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting).The circumstances of the childrens’ deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.

“Let's Bring Her Home First.” Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care

ContextSpecialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is essential for further development of palliative care services for these patients. ObjectivesWe asked whether the population at our center 1) was representative compared with national mortality statistics; 2) showed differences in the clinical course among the four diagnostic categories established by the Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health; and 3) was different to published populations in pediatric palliative care regarding diagnoses, care, and place of death. MethodsRetrospective single center chart analysis of 212 consecutive patients on SPPHC (2009–2015). ResultsMain International Statistical Classification of Diseases and Related Health Problems, 10th Revision groups were nervous system, congenital abnormalities, neoplasia, and metabolic disease, reflecting the mortality statistics for patients one to 20 years. Thirty-six percent of patients were assigned to ACT-3, 34% to ACT-4, 26% to ACT-1, and 4% to ACT-2. ACT-1 patients mostly needed high-intensity care for short durations, ACT-4 patients showed long survival times with mostly intermittent care. Seventy-five percent of patients showed nervous system involvement. Eighty-four percent died at home, 12% in hospital, and 4% in a hospice, with 96% dying at their preferred place. ConclusionOur data on SPPHC show 1) significant differences between Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health groups in terms of care needs and survival; 2) a high prevalence of children with neurological problems; and 3) a large majority of children dying at home.

Maintaining family life balance while facing a child's imminent death-A mixed methods study.

To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. A child's end-of-life phase is an extremely difficult time for the whole family. Parents have specific needs, especially when they care for a dying child at home. Concurrent embedded mixed methods design. This sub-study of the nationwide survey, 'Paediatric End-of-Life Care Needs in Switzerland' (2012-2015) included 47 children who received EOL care at home from 2011-2012. We extracted quantitative data from patients' medical charts and obtained information via parental questionnaire and then compared parents whose child died at home or in hospital by computing generalized estimation equations. We thematically analysed interviews with parents who provided EOL care at home. Parents created an intimate lifeworld and a sense of normality for the child at home. They constantly balanced the family's lifeworld with the requirements and challenges posed by the outside world. This work exhausted parents. Parental 'readiness' and social support drove EOL care for children at home. Parents needed practical help with housekeeping and had negative experiences when dealing with insurance. In only 34.8% of cases was a child's EOL home care supported by paediatric palliative care team. Paediatric end-of-life care at home is only feasible if parents make extraordinary efforts. If family-centred end-of-life home care is provided by a hospital-based paediatric palliative home care team, which includes paid housekeeping help and psychological support, parents' needs could be better met.

Establishment of Specialized Pediatric Palliative Home Care in the Medical Valley of the European Metropolitan Area Nuremberg

Background As part of the 2007 health reform in Germany the structure of outpatient palliative care for children and adolescents was adopted for the first time and then implemented in Erlangen-Nuremberg in 2009. Methods The introduction of Pediatric Palliative Home Care (PPHC) at the Hospital for Children and Adolescents at the University of Erlangen-Nuremberg was retrospectively analyzed between the years 2009 to 2014. Referring medical records (paper-based and electronic) were evaluated systematically. Results Considering 69 patients within this study, 44 (63.8%) died during the investigated period and 61% of these Patients deceased at home. 60 patients (87%) had a written emergency plan, which was jointly developed with patients and particularly their parents and relatives in cooperation with the PPHC team. Over the years and with increasing experience, the number and duration of emergency hospitalization decreased. Even complex therapies, such as patient-controlled analgesia with PCA pump could be implemented on an outpatient basis. Conclusion The descriptive cohort study demonstrates that palliative care for children, despite the medical and structural complexity is possible in an ambulatory setting. It allows a similar, if not better care, compared to inpatient palliative care for children and adolescents, not only for the affected patients, but also for their families.

Listening to parents: The role of symptom perception in pediatric palliative home care.

This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase). Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.

Evaluation of Specialised Paediatric Palliative Home Care in Lower Saxony, Germany - A Qualitative Study on Parents' Perspectives

In 2007 the children's right to specialised paediatric palliative home care became law in Germany. This claim should be met in Lower Saxony by the establishment of a comprehensive specialised paediatric home care (SPPHC). Since April 2010, a central office undertakes the coordination and administration throughout the federal state. Regional teams comprising nursing, medical and psychosocial specialists care for the children and adolescents suffering from complex conditions due to life-limiting conditions - subsidiary to regional health care providers. The aim of the study was to evaluate SPPHC in Lower Saxony. From June 2012 to February 2013, semi-structured interviews were conducted with 20 parents of children aged from 3 to 18 years. The young patients fulfilled all criteria to be eligible for SPPHC. 13 of the families experienced SPPHC. 7 families did not utilise the specialised care, mostly because the palliative situation occurred before the implementation of specialised care. Data were analysed using content analysis (Mayring). Therefore, key aspects of paediatric palliative home care were summarised in main categories. The evaluation of parent's satisfaction with palliative home care was performed by an evaluation scheme developed for the main categories (very good - good - bad- very bad) and operated for every case. 6 dimensions of paediatric palliative home care were identified: (i) benefit of care, (ii) continuity of care, (iii) perception of care providers as a team, (iv) dealing with the issues death and dying/hospice and palliative, (v) care provider's communication/cooperation with parents, and (vi) parent's Information. As all parents clearly indicated a rating on the first 3 categories, these categories were selected for the evaluation of parent's satisfaction with the received home care. The evaluation revealed that parents experienced in SPPHC looked upon these 3 main categories more favourably than parents without the experience of SPPHC. As room for improvement, the respondents requested the extension of physician's presence and communication with the families as well as with each other, efforts to better meet the needs of psycho-social support of the families and to optimise follow up-care. The implementation of SAPPV was rated positively by the concerned families. In addition, options for improvement could be identified.

The EAPC framework on palliative sedation and clinical practice--a questionnaire-based survey in Germany.

Palliative sedation (PS) can be offered to patients with intolerable symptom burden refractory to comprehensive palliative care (PC) treatment. Little is known about the daily practice of using PS in German specialized PC institutions in the context of existing national and international recommendations. This study's primary objective is to explore how PS is used in German specialized PC institutions with reference to the EAPC framework. The heads of all palliative care units, hospices, specialized palliative home care teams, and specialized pediatric palliative home care teams listed in the official address registers were invited to take part in a questionnaire survey about the clinical practice of PS in their institution. Considerable differences of the frequency of PS exist between institutions. The estimated frequency of PS ranges from 0 to 80 % of all patients treated per year (mean 6.7 %). Some PC specialists report to discuss PS as treatment option for every patient they encounter. Specific evaluation and documentation tools are rare. Of the study participants, 36.2 % are not familiar with international and national recommendations. Many differences exist in frequency and clinical handling of PS in Germany. Implementation of international and national recommendations into clinical practice remains inconsistent.

The role of nursing in pediatric palliative home care – Experiences from Lower Saxony, Germany

Background: In 2007, the patient’s right to specialized pediatric palliative home care (SPPHC) became law in Germany. In Lower Saxony, a German federal state with a low population density, an adequate care for children suffering from life-limiting conditions (LLC) should be ensured in the context of low patient numbers and low numbers of specialists. A close cooperation with regional primary health care providers can facilitate the performance of this task. Nursing home services play a decisive role in delivering pediatric palliative home care. Methods : The descriptive retrospective study aimed on the evaluation of nursing home services involvement in and contribution to palliative care in children and adolescents. A second aim was to implement a SPPHC to assure an optimal care provision. Therefore, a standardized questionnaire survey was disseminated to 22 home nursing services, 14 (63%) of them returned the completed form. Data analysis was descriptive. The evaluated needs have been included in the conception of a comprehensive SPPHC in Lower Saxony which was implemented in 2010. Results: In 2008, the home nursing services reported on 168 patients suffering from life-limiting conditions. As incentives for delivering palliative home care, the nursing teams emphasized the support by a specialized team, a 24-hour on-call duty and the increase of educational programs. To meet this demand, a SPPHC was implemented. Since April 2010, a central office undertakes the coordination and administration, while different regional teams comprising nursing, medical and psycho-social specialists care for the children and adolescents suffering from complex conditions due to LLC. Additionally a central hotline service provides 24/7 specialist availability. During the first three years of operation, the SPPHC providers were involved in the management of 131 children suffering from LLC. In total, 6452 hours of SPPHC were delivered, predominantly spent on joint patient care with regional health care providers like nursing teams or resident physicians (30.2%), driving time (22.5%) and coordination of care (15.3%). Nurses specialized in pediatric palliative care delivered 45.3% of SPPHC in Lower Saxony. Conclusions: The provision of a comprehensive SPPHC in a region of low population density is possible. A high percentage of coordinative and logistic efforts is needed to enable the specialist care in each child and all areas. General nursing services and nurses specialized in pediatric palliative care as part of the SPPHC play a crucial role in delivering palliative home care for children and adolescents with LLC .

Specialized Pediatric Palliative Home Care: A Prospective Evaluation

In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents' satisfaction with care, burden of patient care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and QoL (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F). Of 43 families newly admitted to PPHC between April 2011 and June 2012, 40 were included in the study. The median interval between the first and second interview was 8.0 weeks. The involvement of the PPHC team led to a significant improvement of children's symptoms and QoL (P<0.001) as perceived by the parents; and the parents' own QoL and burden relief significantly increased (QOLLTI-F, P<0.001; 7-point change on a 10-point scale), while their psychological distress and burden significantly decreased (HADS, P<0.001; HPS, P<0.001). The involvement of specialized PPHC appears to lead to a substantial improvement in QoL of children and their parents, as experienced by the parents, and to lower the burden of home care for the parents of severely ill children.