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 What are the opportunities for cancer care and related research in primary care? A qualitative study of the views of patients, carers, and practice staff

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703505
Author(s):  
Joseph Clark ◽  
Elvis Amoakwa ◽  
John Blenkinsopp ◽  
Florence Reedy ◽  
Miriam Johnson
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
Cancer Care ◽  
Information Needs ◽  
Controlled Trial ◽  
Unmet Need ◽  
Care Staff ◽  
Trial Participation

BackgroundResearch to identify the role of primary care in cancer care is important. However, trials in primary care are difficult.AimTo understand how patients, families, and primary care clinicians view their role in cancer care and identify opportunities for cancer primary care research.MethodQualitative study embedded within a feasibility cluster randomised controlled trial of a primary care based needs assessment intervention. The Supportive Cancer Needs Survey (SCNS) was the main outcome. In-depth interviews with patients/carers and focus groups with primary care staff explored views on cancer care and trial participation. Data were recorded, transcribed verbatim, and analysed thematically by three independent researchers.ResultsFifteen cancer patients and three carers were interviewed and four focus groups (n = 11) were conducted. Three themes were generated satisfaction with current care; key time-points for improved cancer care; and information and research. Satisfaction with current care among patients was high in spite of 72% reporting at least one moderate-high unmet need at baseline. Most patients undergoing cancer treatment were unsure when to access primary care. Patients and carers highly valued proactive contact from their practice following diagnosis though this was uncommon. Post-oncology discharge was a key time-point for information needs and support for patients. Patients were reluctant to consider palliative care in spite of palliative care needs. Some felt therapeutic benefit from completing study measures.ConclusionPatients are satisfied with cancer primary care despite unmet needs. Palliative care is poorly understood by many who may benefit. Research participation may benefit some patients.

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.

QIM19-127: Novel Admission Checklist for Malignant Bowel Obstruction

2019 ◽  
Vol 17 (3.5) ◽  
pp. QIM19-127
Author(s):  
Gabrielle Gauvin ◽  
Leigh Selesner ◽  
Marcin Chwistek ◽  
Molly Collins ◽  
Crystal Denlinger ◽  
...  
Keyword(s):  
Palliative Care ◽  
Bowel Obstruction ◽  
Multidisciplinary Team ◽  
Care Center ◽  
Tertiary Care ◽  
Management Plan ◽  
Care Plan ◽  
Malignant Bowel Obstruction ◽  
Goals Of Care ◽  
Nccn Guidelines

Background: Malignant bowel obstruction (MBO) is a frequent presentation of advanced abdominal malignancy. Despite the frequency of MBO and the availability of NCCN Guidelines for its management, clinicians struggle to create a personalized care plan accounting for a patient’s current condition, prognosis, and goals of care. The aim of this project is to develop a discussion tool to implement on admission to ensure realistic prognostication and appropriate involvement of the patient, caregivers, and multidisciplinary team in treatment decisions. Methods: At our tertiary care center, a multidisciplinary team composed of surgical oncologists, medical oncologists, palliative care specialists, hospitalists, social workers, and nutritionists developed an algorithm to implement when a patient is admitted with MBO. The algorithm was influenced by the NCCN Guidelines for palliative care but was designed as a single-page checklist that could be easily executed by all team members. Results: The MBO admission checklist is divided into 4 sections. The general assessment section includes information about the etiology, severity, and reversibility of the current and past MBO. Also, the patient’s resuscitation and functional status are reviewed. The cancer care coordination/communication section covers the patient’s oncological history and estimated lifespan, as well as the need for further coordination of care and a goals of care discussion. The subsequent portion covers the management plan, with specific decisions resulting from a goals of care discussion as well as the need for specialized consults. The medical, procedural, and operative interventions the team and patient discussed as options are also documented. A key portion is the risks and benefits discussion for each treatment modality. Lastly, the discussion about future considerations section explores the patient’s wishes for the next episode of MBO. Conclusions: The goal of this checklist is to ensure that a comprehensive discussion is held between the different services involved in a patient’s care at every admission for MBO in order to provide a personalized management plan and improve communication. The next step in our study is to assess the effectiveness of implementation of the checklist as well as its impact on patient satisfaction, quality of life, early hospice referral, and outcomes.

scholarly journals Nursing care in palliative care in pediatric oncology

2021 ◽  
Vol 5 (3) ◽  
pp. 91-94
Author(s):  
Joana Muniz Mendonça ◽  
Luana Luzia de Assis Arruda Corbari ◽  
Matheus Mychael Mazzaro Conchy ◽  
Renan da Silva Bentes
Keyword(s):  
Palliative Care ◽  
Nursing Care ◽  
Pediatric Oncology ◽  
Pediatric Cancer ◽  
Pediatric Patients ◽  
Terminal State ◽  
The Family ◽  
The Face ◽  
Nursing Professionals ◽  
Informative Text

This research has as general theme "Nursing care in palliative care in pediatric oncology", an approach that needs to be further discussed due to the need to prepare nursing professionals working in the pediatric sector with cancer patients who are terminally. Thus, an informative text was produced with information based on authors who have already conducted research on this theme, with a qualitative approach, because this is a Bibliographic research. To guide this research, the general objective was to identify the knowledge and reactions of nursing professionals in pediatric cancer care and as specific objectives to identify the perceptions and feelings that permeate pediatric nursing practice in relation to cancer, treatment, and its implications and to know the care/care activities aimed at children hospitalized in the pediatric oncology sector. It is concluded that the courses directed to nursing need to offer disciplines that prepare these professionals to deal with pediatric patients who are in terminal state, preparing them to comfort the family in the face of the failure of the treatments that the patient underwent.

scholarly journals Perceptions of cervical cancer care among Ethiopian women and their providers: a qualitative study

2022 ◽  
Vol 19 (1) ◽  
Author(s):  
Sahai Burrowes ◽  
Sarah Jane Holcombe ◽  
Cheru Tesema Leshargie ◽  
Alexandra Hernandez ◽  
Anthony Ho ◽  
...  
Keyword(s):  
Cervical Cancer ◽  
Qualitative Study ◽  
Cancer Care ◽  
Addis Ababa ◽  
Group Discussion ◽  
Cancer Control ◽  
Common Source ◽  
Cancer Symptoms ◽  
District Hospitals ◽  
The Government

Abstract Background Cervical cancer is the second most commonly diagnosed cancer among Ethiopian women, killing an estimated 4700 women each year. As the government rolls out the country’s first national cancer control strategy, information on patient and provider experiences in receiving and providing cervical cancer screening, diagnosis, and treatment is critical. Methods This qualitative study aimed to assess the availability of cervical cancer care; explore care barriers and sources of delay; and describe women’s and providers’ perceptions and experiences of care. We analyzed data from 45 informants collected at 16 health centers, district hospitals and referral hospitals in East Gojjam Zone and a support center in Addis Ababa. Thirty providers and ten women receiving care were interviewed, and five women in treatment or post-treatment participated in a focus group discussion. Deductive and inductive codes were used to thematically analyze data. Results Providers lacked equipment and space to screen and treat patients and only 16% had received in-service cervical cancer training. Consequently, few facilities provided screening or preventative treatment. Patients reported low perceptions of risk, high stigma, a lack of knowledge about cervical cancer, and delayed care initiation. All but one patient sought care only when she became symptomatic, and, pre-diagnosis, only half of the patients knew about cervical cancer. Even among those aware of cervical cancer, many assumed they were not at risk because they were not sexually active. Misdiagnosis was another common source of delay experienced by half of the patients. Once diagnosed, women faced multiple-month waits for referrals, and, once in treatment, broken equipment and shortages of hospital beds resulted in additional delays. Barriers to therapeutic treatment included a lack of housing and travel funds. Patient-provider communication of cancer diagnosis was often lacking. Conclusions In-service provider training should be intensified and should include discussions of cervical cancer symptoms. Better distribution of screening and diagnostic supplies to lower-level facilities and better maintenance of treatment equipment at tertiary facilities are also a priority. Expanded cervical cancer health education should focus on stigma reduction and emphasize a broad, wide-spread risk of cervical cancer.

Effective Communication for Newly Diagnosed Pediatric Patients With Cancer: Considerations for the Patients, Family Members, Providers, and Multidisciplinary Team

2019 ◽  
pp. 573-581 ◽  
Author(s):  
Sarah Dobrozsi ◽  
Amy Trowbridge ◽  
Jennifer W. Mack ◽  
Abby R. Rosenberg
Keyword(s):  
Communication Skills ◽  
Pediatric Cancer ◽  
Multidisciplinary Team ◽  
Cancer Care ◽  
Care Delivery ◽  
Effective Communication ◽  
Well Being ◽  
Medical Team ◽  
High Quality ◽  
Personalized Care

Hearing that a child has been diagnosed with cancer is invariably difficult for both patients and their caregivers. Effective communication among patients, caregivers, and medical teams is necessary not only to deliver information and facilitate cancer care delivery but also to support patient and family coping and well-being. In this review, we focus on early communication in pediatric oncology care to (1) highlight the importance of communication between clinicians and patients and within the medical team and (2) describe resources and opportunities for clinicians to improve communication skills. For example, communication between patients and the medical team has several core functions, including the development of shared knowledge and decision-making and the formation of a therapeutic relationship. High-quality communication, regardless of the news being shared, supports and facilitates patient and parent adjustment to diagnosis, hope, and trust. Communication within the medical team supports the delivery of high-quality, personalized care. Despite these critical roles of communication in pediatric cancer care and evidence suggesting communication skills can be learned, formal training is limited. Resources include educational efforts, practical tools, and specific strategies to enhance systematic multidisciplinary team communication. Taken together, continued recognition of the importance of communication in pediatric cancer care has the potential to improve patient, family, and clinician experiences.

scholarly journals Stakeholder perspectives and requirements to guide the development of digital technology for palliative cancer services: a multi-country, cross-sectional, qualitative study in Nigeria, Uganda and Zimbabwe

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Kennedy Bashan Nkhoma ◽  
Bassey Ebenso ◽  
David Akeju ◽  
Samuel Adejoh ◽  
Michael Bennett ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Advanced Cancer ◽  
Digital Technology ◽  
Technology Use ◽  
Cancer Care ◽  
Digital Health ◽  
Digital Technologies ◽  
Cross Sectional ◽  
Improve Access

Abstract Introduction Coverage of palliative care in low and middle-income countries is very limited, and global projections suggest large increases in need. Novel approaches are needed to achieve the palliative care goals of Universal Health Coverage. This study aimed to identify stakeholders’ data and information needs and the role of digital technologies to improve access to and delivery of palliative care for people with advanced cancer in Nigeria, Uganda and Zimbabwe. Methods We conducted a multi-country cross-sectional qualitative study in sub-Saharan Africa. In-depth qualitative stakeholder interviews were conducted with N = 195 participants across Nigeria, Uganda and Zimbabwe (advanced cancer patients n = 62, informal caregivers n = 48, health care professionals n = 59, policymakers n = 26). Verbatim transcripts were subjected to deductive and inductive framework analysis to identify stakeholders needs and their preferences for digital technology in supporting the capture, transfer and use of patient-level data to improve delivery of palliative care. Results Our coding framework identified four main themes: i) acceptability of digital technology; ii) current context of technology use; iii) current vision for digital technology to support health and palliative care, and; iv) digital technologies for the generation, reporting and receipt of data. Digital heath is an acceptable approach, stakeholders support the use of secure data systems, and patients welcome improved communication with providers. There are varying preferences for how and when digital technologies should be utilised as part of palliative cancer care provision, including for increasing timely patient access to trained palliative care providers and the triaging of contact from patients. Conclusion We identified design and practical challenges to optimise potential for success in developing digital health approaches to improve access to and enhance the delivery of palliative cancer care in Nigeria, Uganda and Zimbabwe. Synthesis of findings identified 15 requirements to guide the development of digital health approaches that can support the attainment of global health palliative care policy goals.

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