Pediatric Home Care Research Articles

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.

Improving the Quality of Home Health Care for Children With Medical Complexity

ObjectiveThe objectives of this study are to describe the quality of home health care services for children with medical complexity, identify barriers to delivering optimal home health care, and discuss potential solutions to improve home health care delivery. MethodsIn this qualitative study, we conducted 20 semistructured in-depth interviews with primary caregivers of children with medical complexity, and 4 focus groups with 18 home health nurses. During an iterative analysis process, we identified themes related to quality of home health care. ResultsThere is substantial variability between home health nurses in the delivery of home health care to children. Lack of skills in nurses is common and has serious negative health consequences for children with medical complexity, including hospitalizations, emergency room visits, and need for medical procedures. Inadequate home health care also contributes to caregiver burden. A major barrier to delivering optimal home health care is the lack of training of home health nurses in pediatric care and technology use. Potential solutions for improving care include home health agencies training nurses in the care of children with medical complexity, support for nurses in clinical problem solving, and reimbursement for training nurses in pediatric home care. Caregiver-level interventions includes preparation of caregivers about: providing medical care for their children at home and addressing problems with home health care services. ConclusionsThere are problems in the quality of home health care delivered to children with medical complexity. Training nurses in the care of children with medical complexity and preparing caregivers about home care could improve home health care quality.

Pediatric home care and liaison with legal backup

Pediatric home care and liaison with legal backup

'Believe you can reach the next level'.

Children's nursing expert and BME pioneer Joan Myers has held a variety of posts in children's services during her 30-year nursing career, including staff nurse, paediatric home care nurse, paediatric district nurse and children's community nursing team leader.

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.

Caring for the Family Caregiver: Lessons Learned in Child Health.

Policy to support informal caregivers is a critical health policy issue in Canada. Lessons may be learned from the perspectives and experience in the child health field with applicability for all cared-for persons and their informal caregivers. Familycentred care addresses the centrality of the family caregiver in the design and delivery of health services. A life course approach focuses on key periods of transition and downstream effects facing caregivers over their lifetime. The medical home model where care delivery is more coordinated offers potential direct cost savings for both family caregivers and the healthcare system. Models of pediatric home care that focus on promoting caregiver capacity and integration of unregulated providers show the promise of being acceptable and sustainable solutions to increasing demands for caregiver respite. Finally, a number of assumptions that are somewhat unique to the pediatric caregiver experience are explored and/or challenged. These lessons and assumptions may provide insight for policymakers in the development of systems and supports for all cared-for persons and their caregivers in Canada.

A day in the life of a pediatric home care nurse.

A day in the life of a pediatric home care nurse.

The interRAI Pediatric Home Care (PEDS HC) Assessment: Evaluating the Long-term Community-Based Service and Support Needs of Children Facing Special Healthcare Challenges.

The vast majority of assessment instruments developed to assess children facing special healthcare challenges were constructed to assess children within a limited age range or children who face specific conditions or impairments. In contrast, the interRAI Pediatric Home Care (PEDS HC) Assessment Form was specifically designed to assess the long-term community-based service and support needs of children and youth aged from four to 20 years who face a wide range of chronic physical or behavioral health challenges. Initial research indicates that PEDS HC items exhibit good predictive validity—explaining significant proportions of the variance in parents’ perceptions of needs, case managers’ service authorizations, and Medicaid program expenditures for long-term community-based services and supports. In addition, PEDS HC items have been used to construct scales that summarize the strengths and needs of children facing special healthcare challenges. Versions of the PEDS HC are now being used in Medicaid programs in three states in the United States.

The Pediatric Home Care/Expenditure Classification Model (P/ECM): A Home Care Case-Mix Model for Children Facing Special Health Care Challenges.

Case-mix classification and payment systems help assure that persons with similar needs receive similar amounts of care resources, which is a major equity concern for consumers, providers, and programs. Although health service programs for adults regularly use case-mix payment systems, programs providing health services to children and youth rarely use such models. This research utilized Medicaid home care expenditures and assessment data on 2,578 children receiving home care in one large state in the USA. Using classification and regression tree analyses, a case-mix model for long-term pediatric home care was developed. The Pediatric Home Care/Expenditure Classification Model (P/ECM) grouped children and youth in the study sample into 24 groups, explaining 41% of the variance in annual home care expenditures. The P/ECM creates the possibility of a more equitable, and potentially more effective, allocation of home care resources among children and youth facing serious health care challenges.

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.

Factors for Hospitalization in a Medically Complex Population of Pediatric Home Care Patients

Research has identified demographic, clinical, and technological characteristics that are associated with recurrent pediatric hospital admissions. However, research focusing on risk factors for hospitalization among pediatric home care patients is lacking. The purpose of this study was to identify characteristics associated with 60-day hospitalization among pediatric home care patients. To address this objective, we used information collected from pediatric home care patients, age 6 months to 17 years, who were served by a large not-for-profit home care agency in New York City between 2008 and 2012 ( N = 6,187). Results showed that 5.4% of patients in our study population were hospitalized. Specific characteristics that were significantly associated with hospitalization are described in detail.

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 .

Evaluation of physical stability of all in one parenteral admixtures for pediatric home care with high electrolytes concentrations.

The aim of the study was to evaluate stability of 48 total parenteral admixtures for pediatric patients who require home parenteral nutrition. Admixtures contain high amounts of electrolytes. In a clinical practice electrolytes-enrichment of the parenteral nutrition admixtures is a usual demand, especially on the neonatal/pediatric wards. The supplementation of parenteral nutrition with high concentration of electrolytes is a living problem due to decreased stability of lipid emulsions in nutrition admixtures caused by bivalent cations. Preliminary admixtures were prepared in two-chamber ethylene vinyl acetate bags: amino acids, glucose and electrolytes were combined in one chamber and 20% (w/w) lipid emulsions (SMOFlipid®, Intralipid ® or ClinOleic®) were placed separately in the second chamber. Organic salts of calcium and phosphates were used. Pre-admixtures were stored at +4ºC for up to 21 days after preparation. Each composition of admixtures was prepared twice, because contents of the two chambers were combined at t=0 or after 21 days of storage at +4ºC. Visual observations, globule size distribution (using optical microscopy, laser diffraction and photon correlation spectroscopy methods), pH analyses, zeta potential and surface tension were performed after combining all components together with vitamins. Among 48 of investigated admixtures only two were problematic and other may be stored for at least 21 days at 4°C and completed admixtures demonstrated stability for at least 24 h at room temperature. It was possible to obtain stable admixtures despite of the high concentration of electrolytes.

Safety First . . .

As the Children’s Hospital of Philadelphia (CHOP) strives to become the safest children’s hospital by 2015, CHOP Home Care has worked to set the standard for pediatric home care by introducing innovative practices that support patient safety. We have made the culture of safety a core and embodied value among our clinical and nonclinical staff, and challenge ourselves to become the safest pediatric Home Care provider. Through continual quality improvement efforts, we have embedded safe and novel practices into our department-wide Patient Safety Program, our infection prevention programs, our chronic disease management initiatives, a medication reconciliation initiative, and our handoff and transition activities. The success of our quality improvement programs is indicated by improved patient outcomes and professional association recognition.

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.

Transitioning HIV-Infected Youth Into Adult Health Care

With advances in antiretroviral therapy, most HIV-infected children survive into adulthood. Optimal health care for these youth includes a formal plan for the transition of care from primary and/or subspecialty pediatric/adolescent/family medicine health care providers (medical home) to adult health care provider(s). Successful transition involves the early engagement and participation of the youth and his or her family with the pediatric medical home and adult health care teams in developing a formal plan. Referring providers should have a written policy for the transfer of HIV-infected youth to adult care, which will guide in the development of an individualized plan for each youth. The plan should be introduced to the youth in early adolescence and modified as the youth approaches transition. Assessment of developmental milestones is important to define the readiness of the youth in assuming responsibility for his or her own care before initiating the transfer. Communication among all providers is essential and should include both personal contact and a written medical summary. Progress toward the transition should be tracked and,once completed, should be documented and assessed.

Central Vascular Access Device Guidelines for Pediatric Home-Based Patients: Driving Best Practices

Central vascular access device (CVAD) care for infants and children in home settings is challenging due to small catheter sizes, patient activity, and variation in care and maintenance practices. CVADs require detailed care to prevent complications and unnecessary line replacement. Guidelines that address CVAD care and maintenance for pediatric home-based patients do not exist. This article reviews evidence-based central venous catheter maintenance practices for pediatric home care patients.

Impact and Results of Automated Hand Hygiene Compliance Monitoring

of the guidelines included crossing subspecialty lines and building cohesiveness among the stakeholders. During this process it was discovered that a regional pharmacy home care program had developedguidelines forethanol lockprophylaxisusenot consistent for the pediatric patient population. Two pediatric home care patients had recurring thrombus in their lines. After sharing the guidelines both patients have gone six months without a thrombus. RESULTS: Raw data indicates adoption of the guidelines for line salvaging and prophylaxis treatment. Currently, prophylactic treatment hasbeen initiated for 4 patientswith1month and3monthdata indicating 0 recurring CLABSIs. Line salvaging indicated 90% success rate. The team will continue to monitor results and to evaluate the usefulness of the guidelines with different patient populations. LESSON LEARNED: The concentration of ethanol delivered was a concern for practitioners and needed to be addressed early and accurately to overcome negative perceptions. Development of an ethanol lock algorithmwould have assisted with the administration procedure. Early identification of the appropriate facility committees and approval processes would have facilitated quicker adoption.