Home-Based Pediatric Cancer Care: Perspectives and Improvement Suggestions From Children, Family Caregivers, and Clinicians

2021 ◽  
pp. OP.20.00958
Author(s):  
Lindsay A. Jibb ◽  
Julie Chartrand ◽  
Tatenda Masama ◽  
Donna L. Johnston
Keyword(s):  
Family Caregivers ◽  
Pediatric Cancer ◽  
Cancer Care ◽  
Care Center ◽  
System Level ◽  
Pediatric Care ◽  
Children With Cancer ◽  
Key Informants ◽  
Home Based ◽  
Home Based Care

PURPOSE: Although the hospital remains the dominant site for delivering most pediatric cancer care, home-based care is increasingly provided. To effectively deliver comprehensive, relevant, and acceptable care in children's homes, the voices of these key informants must be considered. We examined the views of children with cancer, their family caregivers, and clinicians on home-based cancer care to identify necessary strategies to improve the delivery of care. METHODS: Children with cancer, their family caregivers, and multiprofessional clinicians who provide care at a tertiary pediatric care center or in the community participated in audio-recorded, semistructured interviews in French and English. Interviews were conducted until data saturation in each participant group was achieved. Interviews were transcribed, coded, and analyzed using thematic analysis. RESULTS: Thirteen children, 20 family caregivers, and 22 clinicians participated. Home-based care was endorsed as a means to improve child health-, family social- and financial-, and system-level outcomes. The success of a home-based model is built on care that addresses child and family informational, treatment and care, material, and psychosocial needs. Mechanisms to improve care include enhanced homecare agency-hospital-family communication, training for homecare nurses in pediatric cancer care, virtual solutions, and an expanded breadth of services provided in-home. Child-, family-, and system-related factors affect the delivery of optimal home-based care. CONCLUSION: Children, families, and clinicians value a model of pediatric cancer care that incorporates home-based services. The insights of these key informants should be reflected in the principles that become the basis of home-based cancer care best practices.

Telemedicine in Cancer Care

2018 ◽  
pp. 540-545 ◽  
Author(s):  
S. Joseph Sirintrapun ◽  
Ana Maria Lopez
Keyword(s):  
Health Care ◽  
Access To Care ◽  
Cancer Care ◽  
Symptom Management ◽  
Lifestyle Modification ◽  
Clinical Settings ◽  
Home Based ◽  
Home Based Care ◽  
Care Costs ◽  
Improve Access

Telemedicine uses telecommunications technology as a tool to deliver health care to populations with limited access to care. Telemedicine has been tested in multiple clinical settings, demonstrating at least equivalency to in-person care and high levels of patient and health professional satisfaction. Teleoncology has been demonstrated to improve access to care and decrease health care costs. Teleconsultations may take place in a synchronous, asynchronous, or blended format. Examples of successful teleoncology applications include cancer telegenetics, bundling of cancer-related teleapplications, remote chemotherapy supervision, symptom management, survivorship care, palliative care, and approaches to increase access to cancer clinical trials. Telepathology is critical to cancer care and may be accomplished synchronously and asynchronously for both cytology and tissue diagnoses. Mobile applications support symptom management, lifestyle modification, and medication adherence as a tool for home-based care. Telemedicine can support the oncologist with access to interactive tele-education. Teleoncology practice should maintain in-person professional standards, including documentation integrated into the patient’s electronic health record. Telemedicine training is essential to facilitate rapport, maximize engagement, and conduct an accurate virtual exam. With the appropriate attachments, the only limitation to the virtual exam is palpation. The national telehealth resource centers can provide interested clinicians with the latest information on telemedicine reimbursement, parity, and practice. To experience the gains of teleoncology, appropriate training, education, as well as paying close attention to gaps, such as those inherent in the digital divide, are essential.

scholarly journals Cost-effectiveness of home-based care of febrile neutropenia in children with cancer

2021 ◽  
Author(s):  
Michelle Tew ◽  
Richard De Abreu Lourenco ◽  
Joshua Gordon ◽  
Karin Thursky ◽  
Monica Slavin ◽  
...  
Keyword(s):  
Cost Effectiveness ◽  
Febrile Neutropenia ◽  
Low Risk ◽  
Hospital Treatment ◽  
Decision Analytic Model ◽  
Children With Cancer ◽  
Patient Level ◽  
Home Based ◽  
Intravenous Antibiotics ◽  
Home Based Care

INTRODUCTION Home-based treatment of low-risk febrile neutropenia (FN) in children with cancer with oral or intravenous antibiotics is safe and effective. There are limited data on the economic impact of this model of care. We evaluated the cost-effectiveness of implementing a low-risk FN program, incorporating home-based intravenous antibiotics, in a tertiary pediatric hospital. METHODS A decision analytic model was constructed to compare costs and outcomes of the low-risk FN program, with usual in-hospital treatment with intravenous antibiotics. The program included a clinical decision rule to identify patients at low-risk for severe infection and home-based eligibility criteria using disease, chemotherapy and patient-level factors. Health outcomes (quality-of-life) and probabilities of FN risk classification and home-based eligibility were based on prospectively collected data. Patient-level costs were extracted from hospital records. Cost-effectiveness was expressed as the incremental cost per quality-adjusted life year (QALY). FINDINGS The mean healthcare cost of home-based FN treatment in low-risk patients was A$7,765 per patient compared to A$20,396 for in-hospital treatment (mean difference A$12,632 (95% CI,12,496-12,767)). Overall, the low-risk FN program was the dominant strategy, being more effective (0.0011 QALY (95% CI,0.0011-0.0012)) and less costly. Results of the model were most sensitive to proportion of children eligible for home-based care program. CONCLUSION Compared to in-hospital FN care, the low-risk FN program is cost-effective, with savings arising from cheaper cost of caring for children at home. These savings could increase as more patients eligible for home-based care are included in the program.

scholarly journals Cost‐effectiveness of home‐based care of febrile neutropenia in children with cancer

2021 ◽  
Author(s):  
Michelle Tew ◽  
Richard De Abreu Lourenco ◽  
Joshua Robert Gordon ◽  
Karin A. Thursky ◽  
Monica A. Slavin ◽  
...  
Keyword(s):  
Cost Effectiveness ◽  
Febrile Neutropenia ◽  
Children With Cancer ◽  
Home Based ◽  
Home Based Care

scholarly journals Processes of user participation among formal and family caregivers in home-based care for persons with dementia

Dementia ◽  
2016 ◽  
Vol 16 (2) ◽  
pp. 158-177 ◽  
Author(s):  
Lill Sverresdatter Larsen ◽  
Hans Ketil Normann ◽  
Torunn Hamran
Keyword(s):  
Family Caregivers ◽  
User Participation ◽  
Positioning Theory ◽  
People With Dementia ◽  
Home Based ◽  
Decision Making Processes ◽  
Care Practices ◽  
Home Based Care ◽  
Legal Consent ◽  
Depth Interviews

Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was ‘negotiating participation in decisions’. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients’ legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

Pediatric cancer care in Armenia: The results of a qualitative analysis.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e19002-e19002
Author(s):  
Saten Hovhannisyan ◽  
Ruzanna Papyan ◽  
Lilit Sargsyan ◽  
Samvel Danielyan ◽  
Lala Vagharshakyan ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Pediatric Oncology ◽  
Pediatric Cancer ◽  
Multidisciplinary Team ◽  
Cancer Care ◽  
Care Center ◽  
High Dose ◽  
Pediatric Oncologist ◽  
The Government

e19002 Background: In Armenia the incidence of pediatric cancer accounts for around 80-100 cases per year. This qualitative study was conducted in 2018 to evaluate the needs and challenges in a provision of pediatric cancer care in Armenia. Comparative qualitative study was conducted in 2020 to evaluate the progress in the field. Methods: Qualitative research methods were incorporated to evaluate the achievements, needs and challenges in a provision of childhood cancer care in Armenia. Semi-structured in-depth interviews were conducted with selected study participants including pediatric oncologist/hematologists, pediatric surgeons, who also treat cancer patients, and radiation oncologists. Purposive sampling technique and qualitative conventional content analysis methods were used. Results: Data collected in January 2020 has shown significant improvements in the field of pediatric oncology in Armenia. In the 2018 study, some of the major issues included lack of centralized pediatric cancer care, pediatric cancer registry, palliative care center, possibility of providing high-dose methotrexate, limited nursing training, multidisciplinary team approaches and use of central catheters. Within two years, majority of these problems were solved or are in the process. In 2019 all 3 pediatric oncology and hematology units were merged and the Pediatric Cancer and Blood Disorders of Armenia was created; with the support from charitable foundations all children with cancer receive free medical and psychosocial coverage; a 25 year data has been collected from all the possible sites, the first pediatric cancer palliative care is under construction, 4 multidisciplinary cancer teams were created, pediatric oncology and hematology fellowship was created at the Yerevan State Medical University to prepare for the first time "pediatric oncologist-hematologist" as a one profession. The existing major problems include very limited provision of pediatric cancer medications by the government, as well as lack of the official registration of the number of essential drugs included in the WHO list. Conclusions: Twinning programs, multidisciplinary team discussions with international experts, improvement in availability of several resources, professional development of the staff are major tools for the progress of pediatric oncology in Armenia. Poor provision and official registration of anti-neoplastic medications by the government still remain a major obstacle.

scholarly journals Continuity of home-based care for persons with dementia from formal and family caregivers’ perspective

Dementia ◽  
2016 ◽  
Vol 18 (3) ◽  
pp. 846-863 ◽  
Author(s):  
Lill Sverresdatter Larsen ◽  
Hans Ketil Normann ◽  
Torunn Hamran
Keyword(s):  
Family Caregivers ◽  
Home Based ◽  
Home Based Care
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