Psychosocial well-being of siblings of pediatric patients in palliative home care
Home Care Services; Pediatric palliative care; quality of life; home care; siblings; family support
Dinkelbach L; Kohler M; Galushko M; Pieper L; Kuhlen M; Danneberg M; Dechert O; Trocan L; JanBen G
J Pain Symptom Manage
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2023.08.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.08.022</a>
Ameliorating Caregiver Burden in the Pediatric Palliative Population Utilizing a Psychophysiological Intervention
Humans; Child; palliative care; pediatrics; Cost of Illness; Caregivers; Home Care Services; caregiver burden; stress; Caregiver Burden; Quality of Life; respite care; Anxiety/therapy; diaphragmatic breathing; informal caregivers; rolestrain
Background: Providing long-term care for a family member can be a source of severe stress for the untrained caregiver, and is known to cause depression, poor overall health, and lower quality of life for the caregiver. This burden may lead to poorer outcomes for the patient, as well as contribute to overall increasing costs of an already strained healthcare system. The purpose of this quality improvement project was to reduce the stress that accompanies caregiver burden through the intervention of diaphragmatic breathing. Method: Diaphragmatic breathing is a low-cost, psychophysiological intervention found to be helpful for reducing stress, which is a significant component of caregiver burden. Caregivers of pediatric patients enrolled in a homecare program were assessed for caregiver burden utilizing the Zarit Burden Interview-12 (ZBI-12). Those who had scored 15 or higher on the ZBI-12 were taught diaphragmatic breathing, and assessed again, two months after using the intervention. Results: A paired dependent t-test revealed that palliative caregivers showed a reduction in ZBI-12 assessment score after implementation of a diaphragmatic breathing intervention (m = 17.4, s = 6.7), compared to before implementation of a diaphragmatic breathing intervention (m = 12.8, s = 8.6), t(11) = 2.513 , P < .05. Conclusion: The intervention resulted in less anxiety, stress, depression, and burnout among the pediatric palliative caregivers. Improvement of caregiver well-being was evidenced by decreased ZBI-12 scores in a postintervention assessment.
Beattie A; Restaino MR
American Journal of Hospice and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091221130760" target="_blank" rel="noreferrer noopener">10.1177/10499091221130760</a>
Factors Associated With Mode of Separation for People With Palliative Diagnoses With Preference for Home Death Receiving Care From a Nurse-Led End of Life (Palliative Extended and Care at Home) Program
Humans; Child; Caregivers; Nurse's Role; Home Care Services; Palliative Care/methods; Death
Palliative Extended and Care at Home (PEACH) is a rapid response nurse-led package of care mobilized for palliative care patients who have an expressed preference to die at home. This study aimed to identify the demographic and clinical predictors of home death for patients receiving the package. Deidentified data were used from administrative and clinical information systems. Univariate and multivariate analyses were conducted to assess association of sociodemographic factors with mode of separation. Furthermore, 1754 clients received the PEACH package during the study period. Mode of separation was home death (75.7%), hospital/palliative care unit admission (13.5%), and alive/discharged from the PEACH Program (10.8%). Of participants with clear preference to die at home, 79% met their wish. Multivariate analysis demonstrated cancer diagnosis, patients who wished to be admitted when death was imminent, and patients with undecided preference for location of death were associated with an increased likelihood of being admitted to the hospital. Compared with those with spousal caregivers, those cared for by their child/grandchild and other nonspouse caregivers were significantly associated with a decreased likelihood of being admitted to the hospital/palliative care unit. Our results show that opportunities to tailor home care based on referral characteristics to meet patient preference to die at home, at individual, system, and policy levels, exist.
Agar MR; Xuan W; Lee J; Barclay G; Oloffs A; Jobburn K; Harlum J; Maurya N; Chow JSF
Journal of Hospice and Palliative Nursing
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/njh.0000000000000841" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000841</a>
Paediatric end-of-life care at home
Humans; Child; Home Care Services; Terminal Care; Palliative Care/px [Psychology]; Parents/px [Psychology]; Terminal Care/px [Psychology]; Hospice Care; Terminal Care; Death
BACKGROUND: A terminally ill child should have the possibility to be at home with their family during the end of life. Provision of care from primary care nurses (PCNs) is crucial, but no model exists on how specialised paediatric palliative care teams (SPPCTs) support the PCNs to perform this task., AIM: To investigate how PCNs evaluated a shared care model between a SPPCT and PCNs in paediatric end-of-life care., METHOD: A 23-item questionnaire was distributed to PCNs involved in care of 14 terminally ill children in November 2019 and January 2020. Descriptive statistics were used., FINDINGS: A total of 20 questionnaires were returned from nurses who agreed/completely agreed that an introductory meeting made them better prepared (78.9%) to deal with the death of a child in their care, cooperating with family members (70.6%) and dealing with own emotions (73.7%). A total of 69.2% felt the meeting helped coping with parents' pressure and 88.9% stated that the trajectory changed how they saw themselves involved in future paediatric palliative care., CONCLUSION: The shared care model was evaluated positively. Clear agreements and specialist support were prerequisites for good trajectories at the end of life. Further research is needed to investigate if the shared care model optimises palliative care and security in relation to child and family.
Larsen SHK; Bording I; Bjergegaard M; Buchreitz J; Mouritzen BT; Brix L; Jespersen BA; Neergaard MA
International Journal of Palliative Nursing
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.12968/ijpn.2023.29.6.282" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.6.282</a>
Home care needs of paediatric palliative patients perceived by professionals: A grounded theory
Enfermeria Clinica
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://www.sciencedirect.com/science/article/pii/S2445147923000164?via%3Dihub">10.1016/j.enfcle.2023.01.001</a>
Pediatric Palliative Care at Home: A Prospective Study on Subcutaneous Drug Administration
drug administration; Home Care Services; home care services hospital-based; Palliative Care; Pediatrics; Prospective Studies; subcutaneous infusions; supportive care; symptom management
CONTEXT: The subcutaneous route is a useful alternative for drug administration in palliative care. Although there is scientific evidence on its use in adult patients, the literature in pediatric palliative care is almost nonexistent. OBJECTIVES: To describe the experience of a pediatric palliative care unit (PPCU) with in-home subcutaneous drug administration symptom control. METHODS: Prospective observational study of patients receiving home-based subcutaneous treatment administered as part of a PPCU treatment regimen over 16 months. Analysis includes demographic and clinical variables and treatment received. RESULTS: Fifty-four different subcutaneous lines were inserted in the 15 patients included, mainly in the thigh (85.2%). The median time of needle in situ was 5.5 days (range: 1-36 days). A single drug was administered in 55.7% of treatments. The most frequently used drugs were morphine chloride (82%) and midazolam (55.7%). Continuous subcutaneous infusion was the predominant administration route (96.7%), with infusion rates oscillating between 0.1 mL/h and 1.5 mL/h. A statistically significant relationship was found between the maximum infusion rate and induration onset. Of the 54 lines placed, 29 (53.7%) had an associated complication requiring line removal. The primary cause for removal was insertion-site induration (46.3%). Subcutaneous lines were mainly used to manage pain, dyspnea, and epileptic seizures. CONCLUSION: In the pediatric palliative care patients studied, the subcutaneous route is most frequently used for administering morphine and midazolam in continuous infusion. The main complication was induration, especially with longer dwell times or higher infusion rates. However, further studies are required to optimize management and prevent complications.
García-López I; Chocarro-González L; Martín-Romero I; Vázquez-Sánchez JM; Avilés-Martínez M; Martino-Alba R
Journal of Pain and Symptom Management
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2023.05.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.05.011</a>
Cardiopulmonary Resuscitation in Pediatric Patients Under Palliative Home Care - A Multicenter Retrospective Study
advanced pediatric life support; Cardiopulmonary Resuscitation; chronic illness; Cpr; emergency medial services; end-of-life (EOL); ethics; Home Care Services; palliative home care; rare diseases; 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.
Schneck E; Janßen G; Vaillant V; Voelker T; Dechert O; Trocan L; Schmitz L; Rohde M; Sander M; Hauch H
Frontiers in Pediatrics
2022
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<a href="http://doi.org/10.3389/fped.2022.1105609" target="_blank" rel="noreferrer noopener">10.3389/fped.2022.1105609</a>
Home-Based Specialized Pediatric Palliative Care: A Systematic Review and Meta-Analysis
Home Care Services; Palliative Care; Pediatric; Place of Death; Quality of Life; Symptom Management
CONTEXT: Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated. OBJECTIVES: To examine the impact of home-based SPPC in children and adolescents with life-limiting conditions, regarding place of death, quality of life and symptom burden. METHODS: We searched Medline, EMBASE, CINAHL, PsycINFO, the Cochrane Central Register of Controlled Trials, Web of Science and Scopus for studies comparing children and adolescents with life-limiting conditions receiving home-based SPPC with children and adolescents not receiving home-based SPPC, or studies reporting before-and-after measurements. We included studies that reported on place of death, quality of life and/or symptoms. Two authors independently screened the articles, extracted data, and assessed quality. Results were synthesized as a systematic narrative synthesis and meta-analysis, using a random-effects model. RESULTS: We included five studies, which reported on 392 children and adolescents. Meta-analysis showed that receiving home-based SPPC was associated with a more than fourfold increased likelihood of home death (risk ratio 4.64, 95% confidence interval 3.06-7.04; 3 studies; n=296). Most studies reported improved quality of life and reduced symptom burden. The included studies were of low to moderate quality with a high risk of bias. CONCLUSION: This systematic review suggests that home-based SPPC is associated with increased likelihood of home death, and might be associated with improved quality of life and reduced symptom burden. The small number of studies and an overall high risk of bias, however, makes the overall strength of evidence low.
Hammer NM; Bidstrup PE; Brok J; Devantier M; Sjøgren P; Schmiegelow K; Larsen A; Kurita GP; Olsen M; Larsen HB
Journal of Pain and Symptom Management
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.139" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.139</a>
Expert Survey on Coverage and Characteristics of Pediatric Palliative Care in Europe - A Focus on Home Care
Child; Europe; Health Care Surveys; Health care quality; access; and evaluation; Home Care Services; Home Care Services/sn [Statistics & Numerical Data]; Home care services; Humans; Palliative Care; Palliative Care/sn [Statistics & Numerical Data]; Palliative care; Pediatrics; Pediatrics/sn [Statistics & Numerical Data]
BACKGROUND: For 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. METHODS: Online survey with in-country experts from N = 33 European countries. RESULTS: Pediatric 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. CONCLUSIONS: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed. Copyright © 2022. The Author(s).
Wager J; Kubek LA; Brenner M; Calmanti S; Doyle C; Lovgren M; Kreicbergs U; Kremer L; Le Moine P; Robert G; Schuiling-Otten M; Schroder-Back P; Verhagen E; Zernikow B
BMC Palliative Care
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-022-01078-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01078-0</a>
What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents
home care; home care services; Paediatrics; palliative care; preferred place of death; terminal care
BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. AIM: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. DESIGN: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. SETTING/PARTICIPANTS: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. RESULTS: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. CONCLUSION: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.
Malcolm C; Knighting K
Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163211023300" target="_blank" rel="noreferrer noopener">10.1177/02692163211023300</a>
interRAI Pediatric Home Care (PEDS-HC) Assessment Tool: Evaluating Ontario Healthcare Workers’ Experience
focus groups; Home care services; needs assessment; pediatrics
High quality pediatric homecare requires comprehensive assessment of the needs, supports, and health care challenges of children with special healthcare needs and their families. There is no standardized homecare assessment system to evaluate children’s clinical needs in the home (support services, equipment, etc.) in Ontario, Canada, which contributes to inequitable homecare service allocation. In 2017, the interRAI Pediatric Home Care assessment tool (PEDS-HC) was implemented on a pilot basis in several regions of Ontario. This qualitative descriptive study explores the experiences of homecare coordinators using the PEDS-HC, seeking to understand the utility and feasibility of this tool through focus group discussion. Four major themes were identified including: the benefits of the tool; areas for modification; challenges to use; and Clinical Assessment Protocols to develop. These themes can guide modifications to the tool to improve utility and improve pediatric home care services. The PEDS-HC is an effective tool to assess children needing homecare in a standardized and comprehensive manner. Use of the tool can improve the quality of homecare services by ensuring equity in service provision and facilitate early identification of clinical issues to prevent unexpected health deteriorations.
Lynch-Godrei A; Doherty M; Vadeboncoeur C
Health Services Insights
2022
<a href="http://doi.org/10.1177/11786329221078124" target="_blank" rel="noreferrer noopener">10.1177/11786329221078124</a>
What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents
terminal care; home care; palliative care; Paediatrics; home care services; preferred place of death
BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. AIM: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. DESIGN: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. SETTING/PARTICIPANTS: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. RESULTS: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. CONCLUSION: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.
Malcolm C; Knighting K
Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163211023300" target="_blank" rel="noreferrer noopener">10.1177/02692163211023300</a>
Telemedicine in children with medical complexity on home ventilation during the COVID-19 pandemic
Adolescent; Child; Chronic Disease; COVID-19; Home Care Services; Hospitalization; mechanical ventilation; noninvasive ventilation; Pandemics; Artificial Respiration; respiratory technology; SARS-CoV-2; Telemedicine; telemonitoring
Children with medical complexity (CMC) are patients with one or more complex chronic conditions dependent on medical technologies. In our unit (Pediatric Pulmonology and Respiratory Intermediate Care Unit, Department of Pediatrics, "Bambino Gesù" Children's Hospital and Research Institute), we regularly follow-up CMC patients, particularly children on long-term, invasive (IMV) or noninvasive (NIV), ventilation. Children suffering from chronic diseases and with medical complexity have lost the possibility to go to the hospital during the COVID-19 pandemic. The aim of this article is to describe our experience with telemedicine (teleconsultation [TC] and telemonitoring of ventilator [TM]) in CMC on ventilation. We presented 21 children on long-term ventilation (NIV or IMV) whose planned hospital admission was postponed due to lockdown. A total of 12 healthcare problems were detected during scheduled TCs. Only one problem was not solved by our remote intervention. Specifically, TM has allowed us to change the ventilator parameters and to monitor patients on ventilation remotely. In conclusion, the use of telemedicine in CMC ventilated patients resulted in a feasible tool to avoid in-person visits during the pandemic.
Onofri A; Pavone M; De Santis S; Verrillo E; Caggiano S; Ullmann N; Cutrera R
Pediatric Pulmonology
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/ppul.25289" target="_blank" rel="noreferrer noopener">10.1002/ppul.25289</a>
Key constituents for integration of care for children assisted with long-term home ventilation: a European study
Access to care; Care coordination; Caregivers; Child; Child Health; Child Health Services; Complex care needs; Europe; Family partnership; Governance; Home Care Services; Humans; Long-term home ventilation; Palliative care; Quality of care; Respiration Artificial; Respite care; Surveys and Questionnaires
BACKGROUND: The number of children requiring long-term home ventilation has consistently increased over the last 25 years. Given the growing population of children with complex care needs (CCNs), this was an important area of focus within the Models of Child Health Appraised (MOCHA) project, funded by the European Union (EU) under the Horizon 2020 programme. We examined the structures and processes of care in place for children with CCNs and identified key constituents for effective integration of care for these children at the community and acute care interface across 30 EU/ European Economic Area (EEA) countries. METHODS: This was a non-experimental descriptive study with an embedded qualitative element. Data were collected by a Country Agent in each of the 30 countries, a local expert in child health services. Data were analysed using descriptive statistics and a thematic analysis was undertaken of the free text data provided. RESULTS: A total of 27 surveys were returned from a possible 30 countries (90.0%) countries. One respondent indicated that their country does not have children on long-term ventilation (LTV) in the home, therefore, responses of 26 countries (86.7%) were analysed. None of the responding countries reported that they had all of the core components in place in their country. Three themes emerged from the free text provided: 'family preparedness for transitioning to home', 'coordinated pathway to specialist care' and 'legal and governance structures'. CONCLUSIONS: While the clinical care of children on LTV in the acute sector has received considerable attention, the results identify the need for an enhanced focus on the care required following discharge to the community setting. The results highlight the need for a commitment to supporting care delivery that acknowledges the complexity of contemporary child health issues and the context of the families that become their primary care givers.
Brenner M; O'Shea MP; Larkin P; Berry J
BMC Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12887-020-1979-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-020-1979-4</a>
Evaluating the Cost-Effectiveness of Home-Based Palliative Care for Children with Special Health Care Needs: A Review Study
chronic disease; cost effectiveness; home care services; pediatric palliative care
Introduction: Due to the increased survival of children with chronic and complex diseases, transferring a part of care provision to home and harnessing the family’s potential with the aim of shortening the length of stay and returning the child to the safe and familiar atmosphere of the family can affect the health system and the family. This study aimed to evaluate the cost-effectiveness of home-based palliative care for children with complex health care needs based on the literature review.Methods: After selecting the keywords related to the research question, by examining MeSH, EMTREE and the experts’ opinions mentioned in articles, searching the databases PubMed/Medline, Embase, Scopus and Web of Science were done through a combination of them. Results: Of the 1739 retrieved studies, 11 studies met the inclusion criteria, which were investigated in three groups of methodological features, economic outcomes and indirect outcomes. The reviewed studies were of medium to high quality. Eight were cohort studies one pre-post study, and 2 economic evaluation studies. Studies showed that the decrease in the costs of home-based palliative care for the children in need of special health care, although little, was the result of either reduced hospital stay or the decreased number of hospitalizations.Conclusion: In order to set up pediatric palliative care services in Iran, considering the cultural atmosphere and the limited resources of the health system, attention should be paid to the cost effectiveness of care settings and the provided services, and measures should be taken in order to improve the situation of the children with special care needs, based on social conditions.
Eshaghian-dorcheh A; Zandi M; Rasouli M; Tahmasebi M; Esmaielzadeh F
International Journal of Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity
Child; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Male; Middle Aged; Qualitative Research; Decision Making; Quality of Life; Young Adult; pediatrics; Death; Parents/psychology; Disabled Children; Caregivers/psychology; Home Care Services; decision-making; life-sustaining treatments; outcomes; Tracheostomy; Grandparents/psychology
OBJECTIVE: To describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision. STUDY DESIGN: In this qualitative study conducted in western North Carolina between 2013 and 2014, we interviewed 56 caregivers of 41 CMC who had received tracheostomies in the past 5 years. Three of the CMC were deceased at the time of the interview; 8 were decannulated. In-depth interviews (35 English, 6 Spanish) were conducted, audio-recorded, and transcribed verbatim. We used ATLAS.ti software to manage data and identified themes related to caregiver perceptions about tracheostomy decision. RESULTS: We found that caregivers often chose tracheostomy because extending the lives of their children and being able to care for them at home were important. Caregivers reported the many benefits of tracheostomy including improvement in respiratory symptoms, physical and developmental health, quality of life, and means to provide medical care quickly when needed. There were negative effects of tracheostomy such as mucous plugs, excessive secretions, accidental decannulation necessitating emergency tracheostomy tube change, and the increased infection risk. Providing medical care for CMC with tracheostomy at home was difficult, but improved over time. Caregivers were generally satisfied with their decision to pursue tracheostomy for their CMC. CONCLUSIONS: Decisional satisfaction with tracheostomy for CMC is high. In counseling caregivers about tracheostomy, clinicians should present both the benefits and risks. Future studies should quantify the outcomes described in this study.
Nageswaran S; Golden SL; Gower WA; King NMP
Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2018.07.045" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2018.07.045</a>
Bringing social context into the conversation about pediatric long-term ventilation
artificial ventilation; Ventilators; long term care; Child; Home Care Services; Long-Term Care; Only Child; Patient-Centered Care; home care; hospital patient; life sustaining treatment; personal experience; quality of life; tracheostomy; child; human; pediatrics; article; decision support system; family decision making; social environment; home environment; medical information; practice gap; Mechanical
Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child's life, the added months to years could largely be spent in the hospital, a long-term care facility, or medical foster care, as well as at home. Clinicians who counsel families about initiating LTV must help them make value-based decisions that account for each child's medical needs and the predicted experience with the technology. That experience depends substantially on how well the family can manage daily care at home: How well they can learn the necessary skills, dedicate the required time, and garner adequate support. Because the success of long-term technologies rests on home care provided by families, each family's social context is relevant to the decision to initiate pediatric LTV. Social context (the physical, geographic, economic, and cultural circumstances in which children and their families live) will impact the child's outcome; those children with medical complexity combined with adverse social factors have the poorest health among all children.1 A recent study showed that ~2% of PICU patients across the United States received a tracheostomy and LTV; almost all of these children had chronic medical conditions.2 Substantial variability was noted in the postdischarge support systems provided to these medically complex patients and their families. Regional resources, such as home nursing, medical day care, and medical transportation, can reduce burdens for this population, but they receive inconsistent local, state, and federal support. Considerable caregiving demands for families managing home medical equipment are well described and can entail employment changes, geographic relocation, or disruption of family structure.3 Clinicians striving to individualize decisions about LTV generally have a limited window into the social context that shapes what it will be like for this child to go home with this family. Similarly, families faced with decisions about LTV for their children may not know how to think through the implications for changes to life at home. Evidence for how to consistently, meaningfully, and fairly incorporate family social contexts into decisions about LTV has not kept pace with the availability of pediatric home medical equipment. The essential question is can this family provide the necessary home care if LTV is initiated for the child? And, if not, what would the alternatives look like, and are they acceptable to the family? These decisions require frank consideration of the child's and the family's potential experience of the treatment alternatives: Complex home care, indefinite inpatient care, medical foster care, or limiting life-sustaining therapies. Reviewing potential home care demands and alternative placements during decisions about initiating LTV may not be helpful for every family, but consistently offering tangible discussions of child and family quality of life with LTV legitimizes and explores these concerns for any.
Henderson CM; Wilfond BS; Boss RD
Hospital Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/hpeds.2016-0168" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2016-0168</a>
Being a presence': The ways in which family support workers encompass, embrace, befriend, accompany and endure with families of life-limited children
home care services; respite service
Children with life-limiting and disabling conditions are surviving longer than previously, and many require palliative and supportive care, usually at home. Home-based care can put family life under considerable strain, as parents care for their child's complex, often unpredictable, continuing care needs. Rainbow Trust Children's Charity aims to bridge gaps in services for children with life-threatening or terminal conditions by providing family support workers (FSWs). The study used a range of methods (surveys, interviews and ethnographic observation) approach to explore key aspects of the work of the FSWs. The target population for the surveys was families with a child having complex, life-threatening or terminal conditions receiving care from FSWs. The participants included 55 families (12 bereaved) and 39 children aged 2-18 years. Thematic analysis revealed how the FSWs became a presence in families' lives in three main ways: (1) encompassing and embracing families through supporting needs and promoting resilience; (2) befriending and bonding through developing knowledge, trusting relationships and a sense of closeness; and (3) accompanying and enduring by 'being with' families in different settings, situations and crises and by enduring alongside the families. The study demonstrated the fundamental importance of workers who are able to provide aspects of support that is usually not provided by other services.
2014-01
Carter BS; Edwards M; Hunt A
Journal Of Child Health Care
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1367493513516391" target="_blank" rel="noreferrer">10.1177/1367493513516391</a>
Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?
adolescent; Child; Female; Humans; Male; Neoplasms; Terminal Care; home care services; hospice care; Parents; Prognosis; Questionnaires; Follow-Up Studies; Attitude to Death; Physicians; Choice Behavior; Residence Characteristics; Hospitals; quality of life; Preschool
BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We aimed to determine bereaved parent and clinician preferences for location to EOL care and death. PROCEDURE: We administered questionnaires to 75 bereaved parents (response rate 54%) and 48 pediatric oncology clinicians (response rate 91%) at a large teaching hospital. Main outcome measure was parent and clinician ranking for preferred location of EOL care and death if given the options of home, hospital or FSPH. RESULTS: Majority of parents and clinicians ranked home as their first choice for EOL care (70.2% and 87%, respectively) and death (70.8% and 89.1%, respectively). Compared to clinicians, parents gave a higher ranking to hospital (P < 0.01) and lower ranking to FSPH (P < 0.01) as the preferred location for EOL care and death. Congruence between actual and preferred location of EOL care was more likely when a palliative care team was involved (P < 0.01) and less likely for children with haematologic malignancies (P = 0.03). CONCLUSIONS: Parents and clinicians prefer home as the location for EOL care and death for children with cancer. Hospital based palliative care is a preferred alternative if home is not desired. FSPH is a relatively recent phenomena and further research needs to be directed towards understanding its cost benefit in comparison to home and hospital-based EOL care. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013-11
Kassam A; Skiadaresis J; Alexander S; Wolfe J
Pediatric Blood & Cancer
2013
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Journal Article
<a href="http://doi.org/10.1002/pbc.24872" target="_blank" rel="noreferrer">10.1002/pbc.24872</a>
Development of an in-home standardized end-of-life treatment program for pediatric patients dying of brain tumors
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Young Adult; Palliative Care; Terminal Care; home care services; hospice care; Hospital Mortality; Health Personnel; Length of Stay; Pediatric Nursing; Program Development; Program Evaluation; Colorado; Patient Admission; Palliative Care; Preschool; Newborn; Brain neoplasms
PURPOSE: To evaluate an end-of-life (EOL) program related to specific outcomes (i.e., number of hospitalizations and place of death) for children with brain tumors. DESIGN AND METHODS: From 1990 to 2005, a retrospective chart review was performed related to specified outcomes for 166 children with admission for pediatric brain tumors. RESULTS: Patients who received the EOL program were hospitalized less often (n = 114; chi-square = 5.001 with df = 1, p <.05) than patients who did not receive the program. PRACTICE IMPLICATIONS: An EOL program may improve symptom management and decrease required hospital admissions for children with brain tumors.
2013-04
Arland LC; Hendricks-Ferguson VL; Pearson J; Foreman NK; Madden JR
Journal for Specialists in Pediatric Nursing
2013
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Journal Article
<a href="http://doi.org/10.1111/jspn.12024" target="_blank" rel="noreferrer">10.1111/jspn.12024</a>
Living in the in-between: families caring for a child with a progressive neurodegenerative illness
adolescent; Child; Female; Humans; Male; Palliative Care; home care services; Pediatrics; Family; Adult; Canada; Emotions; caregivers; Neurodegenerative Diseases; Respite Care; Stress; Preschool; Adaptation; Psychological
Medical advances in recent years have led to an increased life span for children with progressive, neurodegenerative illnesses. The purpose of this hermeneutic inquiry was to explore the experience of families caring for their child at home. In-depth, audiorecorded interviews with six families (13 interviews) living in western Canada were transcribed and analyzed. The illness journey was revealed to be complex and unpredictable. We discovered many metaphors that spoke to the child's/family's life and explored the paradox of duality, such as holding both joy and sorrow, and containing both suffering and love. We outline implications for policy development within the area of respite care and coordination of services for families. The voices of families must be a vital component to influence and guide education and service development within the emerging specialty of pediatric palliative care.
2013-02
Rallison LB; Raffin-Bouchal S
Qualitative Health Research
2013
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Journal Article
<a href="http://doi.org/10.1177/1049732312467232" target="_blank" rel="noreferrer">10.1177/1049732312467232</a>
Case study: the Interact Home Telehealth Project
adolescent; Child; Female; Humans; infant; Male; Young Adult; home care services; Pediatrics; Adult; Attitude of Health Personnel; New South Wales; Aged; Middle Aged; Pilot Projects; Patient Satisfaction; Telemedicine; Computers; Palliative Care; Preschool; Brain Injuries; Monitoring; health promotion; Stroke; Ambulatory; Handheld
Two home telehealth technologies (the Intel Health Guide and the Apple iPad) were trialled by four clinical services of the Hunter New England Local Health District. The iPad was selected by the Paediatric Palliative Care Service, the Stroke Service and the Brain Injury Rehabilitation Service. The Intel Health Guide was selected by the Cardiac Coaching Service. The telehealth devices were loaned to a total of 102 patients for different lengths of time, depending on clinical needs, but typically for about 3 months. A total of 42 clinicians were involved. During the trial, 16 technical problems were recorded and resolved, most concerning problems with connectivity. Nonetheless, the use of home telehealth technologies was positively received by clinicians, management and patients alike. Telehealth is now being integrated into the standard practices of the health district.
2013-10
Katalinic O; Young A; Doolan D
Journal Of Telemedicine And Telecare
2013
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Journal Article
<a href="http://doi.org/10.1177/1357633X13506513" target="_blank" rel="noreferrer">10.1177/1357633X13506513</a>
Integrating oncology and palliative home care in Italy: the experience of the "L'Aquila per la Vita" Home Care Unit
adolescent; Child; Delivery of Health Care; Female; Hospitalization; Humans; Male; retrospective studies; Death; Palliative Care; patient care team; Neoplasms; home care services; Adult; Aged; Middle Aged; Interdisciplinary Communication; Length of Stay; Program Evaluation; Italy; Patient Preference; Medical Records; Chi-Square Distribution; Palliative Care; 80 and over; Integrated; Emergencies
AIM: To evaluate the efficacy of a home care program, closely integrated with a medical oncology department. PATIENTS AND METHODS: The charts, prospectively recorded, of all the patients treated at home by the "L'Aquila per la Vita" Home Care Unit from August 2006 to December 2011, were reviewed. The number of patients, home accesses, length of the home care, hospital admission, emergency calls, and the place of death were recorded. Data were analyzed considering the origin of the patients (medical oncology department or other). RESULTS: A total of 461 patients was followed at home for a total of 10,503 home accesses (median accesses/patient, 20; range, 1-159). The median length of home care was 76 days (range, 2-643 days). The median was 101 days for patients coming from the medical oncology department and 53 days for patients coming from other origins (P <0.0005). There were 428 emergency calls (4.1% of all the home accesses). Emergency calls accounted for 253 of 7,364 home accesses (3.4%) among patients coming from the medical oncology department and for 175 of 3,139 home accesses (5.6%) among patients coming from other origins (P = 0.00005). Eighty of 461 patients (17.3%) required one in-hospital admission and 19/461 patients (4.1%) more than one. Fifty-nine of 259 (17.8%) patients coming from the medical oncology department and 40 of 186 (26.9%) coming from other origins required in-hospital admissions (P = 0.04). A total of 311 patients died (163 coming from the medical oncology department and 148 from other origins). Twenty-eight of 163 (17.1%) coming from the medical oncology department and 52 of 148 (35.1%) coming from other origins died in the hospital (P = 0.0002). CONCLUSIONS: A multidisciplinary and expert team, closely integrated with the hospital, can guarantee a long length of home care, avoiding hospitalization and closing the gap between the patients' preferences and the services offered regarding the place of death.
2013-04
Porzio G; Aielli F; Verna L; Martella F; Aloisi P; Ficorella C
Tumori
2013
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Journal Article
<a href="http://doi.org/10.1700/1283.14196" target="_blank" rel="noreferrer">10.1700/1283.14196</a>
Palliative care of children with brain tumors: a parental perspective
adolescent; Child; Female; Humans; infant; Male; Young Adult; Palliative Care; home care services; Adult; Parents; Middle Aged; Attitude to Death; Qualitative Research; Focus Groups; Activities of Daily Living; Spirituality; Practice; Preschool; Adaptation; Psychological; Attitudes; Brain neoplasms; Health Knowledge; PEDI Study
OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents of 17 children who had died of brain tumors. INTERVENTION: Parents participated in 3 semistructured focus group interviews. MAIN OUTCOME MEASURES: Themes identified through thematic analysis of interview transcripts. RESULTS: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. CONCLUSION: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.
2010-03
Zelcer S; Cataudella D; Cairney A; Elizabeth L; Bannister SL
Archives Of Pediatrics & Adolescent Medicine
2010
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Journal Article
<a href="http://doi.org/10.1001/archpediatrics.2009.284" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.284</a>
Outcomes and causes of death in children on home mechanical ventilation via tracheostomy: an institutional and literature review
Child; Humans; Cohort Studies; home care services; Positive-Pressure Respiration; Tracheostomy; Treatment Outcome; adolescent; Preschool; infant; retrospective studies; cause of death; Hospital-Based
OBJECTIVE: To describe outcomes and causes of death in children on chronic positive-pressure ventilation via tracheostomy. STUDY DESIGN: We conducted a retrospective observational cohort analysis of 228 children enrolled in an university-affiliated home mechanical ventilation (HMV) program over 22 years (990 person-years). Cumulative incidences of survival and liberation from HMV are presented. Time-to-events were compared by reason for chronic respiratory failure (CRF) and age and date of HMV initiation with Kaplan-Meier and Cox regression analyses. Circumstances of death are described. RESULTS: Of our cohort, 47 of 228 children died, and 41 children were liberated from HMV. The 5-year cumulative incidences of survival and liberation were 80% and 24%, respectively. Being placed on HMV for chronic pulmonary disease was independently associated with liberation from HMV (hazard ratio, 7.38; 95% CI, 3.0-18.2; P < .001). Neither age nor reasons for CRF were associated with shortened survival. Progression of underlying condition accounted for only 34% of deaths; 49% of deaths were unexpected. CONCLUSION: Most children on HMV survive or were weaned off. However, a sizable number of children in our cohort died, and many deaths were unexpected and from causes not directly related to their primary reason for CRF.
2010
Edwards JD; Kun SS; Keens TG
The Journal Of Pediatrics
2010
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Journal Article
<a href="http://doi.org/10.1016/j.jpeds.2010.06.012" target="_blank" rel="noreferrer">10.1016/j.jpeds.2010.06.012</a>
A home for medically complex children: the role of hospital programs
Child; Humans; home care services; Health Services Needs and Demand; Continuity of Patient Care; Models; Organizational; Disease Management; Hospitalized; Hospital-Based
The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care services. Despite concerted efforts to apply the medical home concept to the care of children with special healthcare needs, many barriers to its implementation still exist, in particular, for the subset of children with special healthcare needs who are medically complex. Applying the medical home concept to hospital-based care coordination may benefit both children with complex conditions and their families, as well as the community-based providers.
2008
Cohen E; Friedman J; Nicholas DB; Adams S; Rosenbaum P
Journal For Healthcare Quality
2008
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Journal Article
<a href="http://doi.org/10.1111/j.1945-1474.2008.tb01137.x" target="_blank" rel="noreferrer">10.1111/j.1945-1474.2008.tb01137.x</a>
The role of nurses in physician-assisted deaths in Belgium
Female; Humans; Male; Young Adult; Adult; Data Collection; Logistic Models; Questionnaires; Middle Aged; Euthanasia; Nurse's Role; Confidence Intervals; Odds Ratio; Suicide; Belgium; decision making; Active; home care services; Assisted/statistics & numerical data; Voluntary/statistics & numerical data; Active/statistics & numerical data; Terminal Care/methods/statistics & numerical data
BACKGROUND: Belgium's law on euthanasia allows only physicians to perform the act. We investigated the involvement of nurses in the decision-making and in the preparation and administration of life-ending drugs with a patient's explicit request (euthanasia) or without an explicit request. We also examined factors associated with these deaths. METHODS: In 2007, we surveyed 1678 nurses who, in an earlier survey, had reported caring for one or more patients who received a potential life-ending decision within the year before the survey. Eligible nurses were surveyed about their most recent case. RESULTS: The response rate was 76%. Overall, 128 nurses reported having cared for a patient who received euthanasia and 120 for a patient who received life-ending drugs without his or her explicit request. Respectively, 64% (75/117) and 69% (81/118) of these nurses were involved in the physician's decision-making process. More often this entailed an exchange of information on the patient's condition or the patient's or relatives' wishes (45% [34/117] and 51% [41/118]) than sharing in the decision-making (24% [18/117] and 31% [25/118]). The life-ending drugs were administered by the nurse in 12% of the cases of euthanasia, as compared with 45% of the cases of assisted death without an explicit request. In both types of assisted death, the nurses acted on the physician's orders but mostly in the physician's absence. Factors significantly associated with a nurse administering the life-ending drugs included being a male nurse working in a hospital (odds ratio [OR] 40.07, 95% confidence interval [CI] 7.37-217.79) and the patient being over 80 years old (OR 5.57, 95% CI 1.98-15.70). INTERPRETATION: By administering the life-ending drugs in some of the cases of euthanasia, and in almost half of the cases without an explicit request from the patient, the nurses in our study operated beyond the legal margins of their profession.
2010
Inghelbrecht E; Bilsen J; Mortier F; Deliens L
Canadian Medical Association Journal
2010
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Journal Article
<a href="http://doi.org/10.1503/cmaj.091881" target="_blank" rel="noreferrer">10.1503/cmaj.091881</a>
Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home
Child; Humans; home care services; Family; caregivers; Respiration; Family Health; Stress; Psychological; Ethics; Artificial
OBJECTIVE: The growing shift toward home care services assumes that "being home is good" and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for technology-dependent children and the moral dilemmas that this population confronts remain virtually unknown. This study explored the moral dimension of family experience through detailed accounts of life with a child who requires assisted ventilation at home. This study involved an examination of moral phenomena inherent in (1) the individual experiences of the ventilator-assisted child, siblings, and parents and (2) everyday family life as a whole. METHODS: A qualitative method based on Richard Zaner's interpretive framework was selected for this study. The population of interest for this study was the families of children who are supported by a ventilator or a positive-pressure device at home. Twelve families (38 family members) were recruited through the Quebec Program for Home Ventilatory Assistance. Children in the study population fell into 4 diagnostic groups: (1) abnormal ventilatory control (eg, central hypoventilation syndrome), (2) neuromuscular disorders, (3) spina bifida, and (4) craniofacial or airway abnormalities resulting in upper airway obstruction. All 4 of these diagnostic groups were included in this study. Among the 12 children recruited, 4 received ventilation via tracheostomies, and 8 received ventilation with face masks. All of the latter received ventilation only at night, except for 1 child, who received ventilation 24 hours a day. Family moral experiences were investigated using semistructured interviews and fieldwork observations conducted in the families' homes. RESULTS: Data analysis identified 6 principal themes. The themes raised by families whose children received ventilation invasively via a tracheostomy were not systematically different or more distressed than were families of children with face masks. The principal themes were (1) confronting parental responsibility: parental responsibility was described as stressful and sometimes overwhelming. Parents needed to devote extraordinary care and attention to their children's needs. They struggled with the significant emotional strain, physical and psychological dependence of the child, impact on family relationships, living with the daily threat of death, and feeling that there was "no free choice" in the matter: they could not have chosen to let their child die. (2) Seeking normality: all of the families devoted significant efforts toward normalizing their experiences. They created common routines so that their lives could resemble those of "normal" families. These efforts seemed motivated by a fundamental striving for a stable family and home life. This "striving for stability" was sometimes undermined by limitations in family finances, family cohesion, and unpredictability of the child's condition. (3) Conflicting social values: families were offended by the reactions that they faced in their everyday community. They believe that the child's life is devalued, frequently referred to as a life not worth maintaining. They felt like strangers in their own communities, sometimes needing to seclude themselves within their homes. (4) Living in isolation: families reported a deep sense of isolation. In light of the complex medical needs of these children, neither the extended families nor the medical system could support the families' respite needs. (5) What about the voice of the child? The children in this study (patients and siblings) were generally silent when asked to talk about their experience. Some children described their ventilators as good things. They helped them breathe and feel better. Some siblings expressed resentment toward the increased attention that their ventilated sibling was receiving. (6) Questioning the moral order: most families questioned the "moral order" of their lives. They contemplated how "good things" and "bad things" are determined in their world. Parents described their life as a very unfair situation, yet there was nothing that they could do about it. Finally, an overarching phenomenon that best characterizes these families' experiences was identified: daily living with distress and enrichment. Virtually every aspect of the lives of these families was highly complicated and frequently overwhelming. An immediate interpretation of these findings is that families should be fully informed of the demands and hardships that would await them, encouraging parents perhaps to decide otherwise. This would be but a partial reading of the findings, because despite the enormous difficulties described by these families, they also reported deep enrichments and rewarding experiences that they could not imagine living without. Life with a child who requires assisted ventilation at home involves living every day with a complex tension between the distresses and enrichments that arise out of this experience. The conundrum inherent in this situation is that there are no simple means for reconciling this tension. This irreconcilability is particularly stressful for these families. Having their child permanently institutionalized or "disconnected" from ventilation (and life) would eliminate both the distresses and the enrichments. These options are outside the realm of what these families could live with, aside from the 1 family whose child is now permanently hospitalized, at a tremendous cost of guilt to the family. CONCLUSIONS: These findings make important contributions by (1) advancing our understanding of the moral experiences of this group of families; (2) speaking to the larger context of other technology-dependent children who require home care; (3) relating home care experiences to neonatal, critical care, and other hospital services, suggesting that these settings examine their approaches to this population that may impose preventable burdens on the lives of these children and their families; and (4) examining a moral problem with an empirical method. Such problems are typically investigated through conceptual analyses, without directly examining lived experience. These findings advance our thinking about how we ought to care for these children, through a better understanding of what it is like to care for them and the corresponding major distresses and rewarding enrichments. These findings call for an increased sensitization to the needs of this population among staff in critical care, acute, and community settings. Integrated community support services are required to help counter the significant distress endured by these families. Additional research is required to examine the experience of other families who have decided either not to bring home their child who requires ventilation or withdraw ventilation and let the child die.
2006-01
Carnevale FA; Alexander E; Davis M; Rennick J; Troini Rita
Pediatrics
2006
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Journal Article
<a href="http://doi.org/10.1542/peds.2005-0789" target="_blank" rel="noreferrer">10.1542/peds.2005-0789</a>
Relationship between three palliative care outcome scales
Female; Hospitalization; Humans; Male; Adult; England; Questionnaires; Aged; Middle Aged; Socioeconomic Factors; Psychometrics; Sickness Impact Profile; 80 and over; Adaptation; Psychological; Caregivers/psychology; Family/psychology; Palliative Care/psychology; Quality of Life/psychology; home care services; Neoplasms/physiopathology/psychology/therapy; Outcome Assessment (Health Care)/methods
BACKGROUND: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial structure of, three widely used scales among advanced cancer patients. METHODS: Patients were recruited who received home or hospital palliative care services in the south of England. Hope, quality of life and palliative outcomes were assessed by patients in face to face interviews, using three previously established scales - a generic measure (EQoL), a palliative care specific measure (POS) and a measure of hope (Herth Hope Index). Analysis comprised: exploratory factor analysis of each individual scale, and all scales combined, and confirmatory factor analysis for model building and validation. RESULTS: Of 171 patients identified, 140 (81%) consented and completed first interviews; mean age was 71 years, 54% were women, 132 had cancer. In exploratory analysis of individual means, three out of the five factors in the EQoL explained 75% of its variability, four out of the 10 factors in POS explained 63% of its variability, and in the Hope Index, nine out of the 12 items explained 69% of its variability. When exploring the relative factorial structure of all three scales, five factors explained 56% of total combined variability. Confirmatory analysis reduced this to a model with four factors - self-sufficiency, positivity, symptoms and spiritual. Removal of the spiritual factor left a model with an improved goodness of fit and a measure with 11 items. CONCLUSION: We identified three factors which are important outcomes and would be simple to measure in clinical practice and research.
2004
Higginson IJ; Donaldson N
Health And Quality Of Life Outcomes
2004
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Journal Article
<a href="http://doi.org/10.1186/1477-7525-2-68" target="_blank" rel="noreferrer">10.1186/1477-7525-2-68</a>
Paediatric palliative home care with Internet-based video-phones: lessons learnt
Child; Humans; home care services; Internet; Queensland; PPC Book Chapter 2011 (Kim Widger); Palliative Care/organization & administration; Child Health Services/organization & administration; Hospital-Based/organization & administration; Remote Consultation/organization & administration
We have designed and tested an Internet-based video-phone suitable for use in the homes of families in need of paediatric palliative care services. The equipment uses an ordinary telephone line and includes a PC, Web camera and modem housed in a custom-made box. In initial field testing, six clinical consultations were conducted in a one-month trial of the videophone with a family in receipt of palliative care services who were living in the outer suburbs of Brisbane. Problems with variability in call quality--namely audio and video freezing, and audio break-up--prompted further laboratory testing. We completed a programme of over 250 test calls. Fixing modem connection parameters to use the V.34 modulation protocol at a set bandwidth of 24 kbit/s improved connection stability and the reliability of the video-phone. In subsequent field testing 47 of 50 calls (94%) connected without problems. The freezes that did occur were brief (with greatly reduced packet loss) and had little effect on the ability to communicate, unlike the problems arising in the home testing. The low-bandwidth Internet-based video-phone we have developed provides a feasible means of doing telemedicine in the home.
2004
Bensink M; Armfield N; Russell TG; Irving H; Wootton R
Journal Of Telemedicine And Telecare
2004
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Journal Article
<a href="http://doi.org/10.1258/1357633042614465" target="_blank" rel="noreferrer">10.1258/1357633042614465</a>
Sublingual lorazepam at home for acute treatment of seizures
Home Nursing; Epilepsy; Seizures; Administration; Oral; home care services; Sublingual; Benzodiazepinones; Chlorobenzenes; Convulsions; Lorazepam
eizures are often initially treated at home. The standard treatment is rectal diazepam. Sublingual (SL) lorazepam is easy to administer but has not been well evaluated for efficacy in epilepsy. It has been reported to be effective for serial seizures in 10 children.1 Aim: To study the efficacy of SL lorazepam for seizures in children at home. Method: After informed consent 18 children were enrolled in the study. The parents were instructed to use SL Lorazepam for seizures lasting at least 5 minutes. After each administration, the parents completed a standardised questionnaire. The outcomes were time from lorazepam administration to seizure cessation and the occurrence of any adverse events. Results: 18 children received SL lorazepam to treat 49 seizures. 26 were prolonged and 23 serial seizures. Lorazepam was given after a median of 5 minutes (range 1–60). 39 seizures stopped after a median of 6 minutes (range 1–75). Seizures recurred in 17 children after a median of 8 hours (range 1–16). 34 of 49 administrations were followed by sleep and 4 by rapid breathing or snoring. No apneas were reported. 16 children visited the emergency department of which 13 were admitted. All parents thought lorazepam was easy to administer. Conclusion: SL lorazepam is effective in the treatment of prolonged and serial seizures at home. Larger prospective studies are needed. SL lorazepam may be a promising alternative treatment to rectal diazepam.
2003
Wassmer E; Allen A; Bjelajac A; Weiss S
Archives Of Disease In Childhood
2003
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Journal Article
Caring for kids: How to develop a home-based support program for children and adolescents with life-threatening conditions
Child; Terminal Care; social support; Adolescents; home care services
This manual was designed to help hospices and other health providers develop primarily home-based palliative care services for children living with life-threatening conditions. We believe that the home setting often is theweak link in the palliative care continuum for infants, children, adolescents and their families. We also believe that hospice programs in many communities may be the best positioned to advance that continuum, although there are essential lessons, perspectives, relationships and commitments that they will need in order to build a successful, high-quality pediatric palliative care program that is responsive to the needs of their community.
2004
Beresford L
2004
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Journal Article
Death of a child at home or in the hospital: subsequent psychological adjustment of the family
Child; Female; Hospitalization; Humans; Male; Grief; Family; Adult; Middle Aged; Death; Personality Inventory; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; Comparative Study; Neoplasms/therapy; location of death; Interview; home care services; MMPI; Terminal Care/methods
Twenty-four families who had participated in a Home Care Program for children terminally ill with cancer and 13 families of similar children who had died in the hospital completed inventories on parent and sibling personality as well as family functioning three to 29 months after the child's death. Parents of patients who received terminal care in the hospital were more anxious, depressed, and defensive and had greater tendencies toward somatic and interpersonal problems than parents of patients in the Home Care Program. Siblings of patients who received terminal care in the hospital were more emotionally inhibited, withdrawn, and fearful than their counterparts in the Home Care Program. Although some group differences in parental personality may have antedated terminal care, these results confirm parental reports of more adequate family adjustment following participation in a structured Home Care Program.
Mulhern RK; Lauer ME; Hoffmann RG
Pediatrics
1983
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Journal Article
<a href="http://doi.org/10.1016/s0002-7138(09)61529-6" target="_blank" rel="noreferrer">10.1016/s0002-7138(09)61529-6</a>
Do we need another "stress and caregiving" study?
Humans; Health Services Research; Psychological; Stress; home care services
1989
Zarit SH
The Gerontologist
1989
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Journal Article
<a href="http://doi.org/10.1093/geront/29.2.147" target="_blank" rel="noreferrer">10.1093/geront/29.2.147</a>
An alternative in terminal care: results of the National Hospice Study
Female; Hospitalization; Male; United States; Adult; Aged; Health Services Research; Cancer Care Facilities; Outcome and Process Assessment (Health Care); quality of life; Non-U.S. Gov't; U.S. Gov't; Comparative Study; Models; Costs and Cost Analysis; Health; Insurance; Medicare/economics; Human; Theoretical; Support; Middle Age; home care services; Non-P.H.S.; Neoplasms/physiopathology/psychology/therapy; Hospices/classification/economics/organization & administration; Terminal Care/economics/organization & administration; Pain/epidemiology; Reimbursement/economics
Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional terminal care. The National Hospice Study was a multi-site, quasi-experimental study to compare the experiences of terminal cancer patients and their families in hospices with those of similar patients and families receiving conventional terminal care. The results indicate that, although care is different in hospices, e.g. lesser utilization of aggressive interventional therapy and diagnostic testing, patients' quality of life is similar in the hospice and conventional care systems with the exception of pain and symptom control, which may be better in the inpatient hospice setting. Hospice patients are more likely to die at home and their families are satisfied with that outcome. Otherwise, no consistent superiority of family outcome was associated with the hospice approach. The cost of hospice care is less than that of conventional terminal care for patients in hospices without inpatient facilities, but the cost of hospice appears to be equivalent to conventional care for patients in hospices having beds.
1986
Greer DS; Mor V; Morris JN; Sherwood S; Kidder D; Birnbaum H
Journal Of Chronic Diseases
1986
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Journal Article
Methadone response in advanced cancer patients with pain followed at home
Female; Humans; Male; Pain; Pain Measurement; Analgesics; Prospective Studies; Middle Aged; Sex Factors; Neoplasms/physiopathology; Methadone/administration & dosage/adverse effects/therapeutic use; Opioid/administration & dosage/adverse effects/therapeutic use; home care services; Intractable/drug therapy
Concerns about the safety of therapy with methadone, which may arise because of its pharmacokinetic characteristics and inappropriate dosing, may deter clinicians from using this drug, especially in elderly patients. Experience is accumulating that the drug may be used safely and successfully if low doses are given initially and care is taken in the titration of the dose against the pain. A prospective study was carried out in a consecutive sample of 45 advanced cancer patients followed at home, who had never received other strong opioids for their pain. Patients were treated with an oral liquid preparation of methadone, which was administered 2-3 times daily, according to need. Doses were kept as low as possible and were titrated to achieve acceptable analgesia with minimal adverse effects. The methadone starting dose (MSD) at referral, the maximum dose of methadone (MMD), the days of methadone treatment, the use of other nonopioid analgesics, symptoms associated with methadone therapy, pain intensity, and pain mechanism were recorded. Methadone escalation index percentage (MEI%) and methadone escalation index in mg (MEI mg) were calculated from these parameters. No correlations between age and gender, and MSD, MMD, days on methadone, VAS and symptoms were found. No significant differences were found in pain mechanisms, age, and other parameters, including methadone-related symptoms. Treatment of pain with methadone provides important support to patients with cancer followed at home and the risks are low with individually titrated doses, even in older patients or in the presence of a neuropathic pain mechanism.
1999
Mercadante S; Casuccio A; Agnello A; Barresi L
Journal Of Pain And Symptom Management
1999
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Journal Article
<a href="http://doi.org/10.1016/s0885-3924(99)00048-2" target="_blank" rel="noreferrer">10.1016/s0885-3924(99)00048-2</a>
Variables influencing end-of-life care in children and adolescents with cancer
Child; Female; Humans; Male; Adult; Withholding Treatment; Resuscitation Orders; adolescent; Preschool; Empirical Approach; Death and Euthanasia; decision making; infant; cause of death; Neoplasms/complications/therapy; location of death; hospice care; home care services; Terminal Care/trends
BACKGROUND: The purpose of this study was to describe the variables influencing end-of-life care in children and adolescents dying of cancer. MATERIALS AND METHODS: Records of 146 children with cancer who died at Children's Hospital were reviewed for demographics, diagnosis, location of death, withdrawal of life support, use of "do not resuscitate" (DNR) orders, and the length of time that those orders were in effect. RESULTS: Ninety-five patients were evaluated. Fifty-nine died of progressive disease and 36 deaths were therapy-related. Sixty-four percent of disease-related deaths occurred at home with support from home care or hospice. Only 10% of all patients died while receiving maximal aggressive support in the intensive care unit. Age, diagnosis (solid tumor vs. leukemia), cause of death, length of last hospital admission, and the duration of DNR orders had a significant correlation with the place of death and referral to and use of hospice. Thirty-five percent of all patients had hospice support. CONCLUSIONS: Most children who die of cancer die because of progressive disease at home with hospice support. Do not resuscitate orders were written for most patients who died. End-of-life decisions are influenced by patient diagnosis, cause of death, and age.
Klopfenstein KJ; Hutchison C; Clark C; Young D; Ruymann FB
Journal Of Pediatric Hematology/oncology
2001
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Journal Article
<a href="http://doi.org/10.1097/00043426-200111000-00004" target="_blank" rel="noreferrer">10.1097/00043426-200111000-00004</a>
Telehealth: connecting with families to promote health and healing
Family; Telemedicine; home care services
Telehealth is defined as the provision of health care via telecommunications wherever individuals are geographically separated. In this literature review, we explore the role of telehealth in family care. Telehealth has not been fully examined for its potential to support health and healing in families. Moreover, technological innovation, such as telehealth, presents an opportunity to question concepts and approaches to family care.
2001
Siden H; Young L; Tredwell S; Starr E
Journal Of Family Nursing
2001
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Journal Article
<a href="http://doi.org/10.1177/107484070100700401" target="_blank" rel="noreferrer">10.1177/107484070100700401</a>
Symptoms and Suffering at the End of Life in Children with Cancer
Child; Humans; Terminal Care; Health Care Surveys; Parents; Withholding Treatment; Logistic Models; Questionnaires; Physicians; Boston; Longitudinal Studies; Quality of Health Care; quality of life; Empirical Approach; Non-U.S. Gov't; P.H.S.; Professional Patient Relationship; Research Support; U.S. Gov't; Death and Euthanasia; Psychological; Stress; Clodronate; Neoplasms/complications/therapy; Oncology at EOL; Pain/etiology/therapy; Anorexia/etiology/therapy; home care services; Children's Hospital (Boston); Constipation/etiology/therapy; Dana-Farber Cancer Institute (Boston); Diarrhea/etiology/therapy; Dyspnea/etiology/therapy; Fatigue/etiology/therapy; Palliative Care/standards/statistics & numerical data
Cancer is the leading cause of nonaccidental death in childhood.1 There has, however, been little evaluation of the overall experience at the end of life of children who are dying of cancer or of their symptoms other than pain.2,3 A number of studies have demonstrated that among adults, the quality of care at the end of life is suboptimal.4–8 For example, one study of elderly patients found that there was considerable suffering at the end of life, with up to 25 percent of patients experiencing moderate-to-severe pain in the last three days of life.7 It is not known . . .
2000-02
Wolfe J; Grier Holcombe E; Klar Neil; Levin SB; Ellenbogen JM; Salem-Schatz S; Emanuel EJ; Weeks Jane C
New England Journal Of Medicine
2000
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Journal Article
<a href="http://doi.org/10.1056/NEJM200002033420506" target="_blank" rel="noreferrer">10.1056/NEJM200002033420506</a>
Outcome evaluation in a home palliative care service
Female; Male; Adult; Prospective Studies; Aged; 80 and over; Non-U.S. Gov't; Human; quality of life; Palliative Care; Support; Middle Age; home care services; Outcome Assessment (Health Care)
The complexity of assessing the impact of palliative care is much greater than in other fields of medicine, due to the shortcomings of traditional outcome indicators. We conducted a prospective study to describe the patient's quality of life at the outset and during palliative care at home and to define some potential indicators of palliative care outcomes with the aim of assessing the quality of home care as provided by a palliative care unit. Seventy-three patients who received care at home were assessed. The median survival in palliative home care was 29 days. To evaluate the degree of symptom distress, we used an Italian version of the Symptom Distress Scale. Assessing the quality-of-life pattern over time, we observed that palliative care was effective in mitigating pain and, at least in part, in stimulating appetite, curbing nausea, and controlling psychological aspects. The subscales referring to social and functional aspects steadily worsened. The difficulties encountered (the high percentage of missing data, the considerable number of patients treated for less than 10 days, etc.) should be a warning against using only one assessment instrument. It is worthwhile defining the various potential outcomes of palliative care even though all results will not always be measurable in every patients. Only a global assessment, a "multiple outcomes approach," based on different indicators, would allow for evaluation of the outcome of the care process.
1997
Peruselli C; Paci E; Franceschi P; Legori T; Mannucci F
Journal Of Pain And Symptom Management
1997
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Journal Article