scholarly journals Major lessons learned from a nationally-based community–academic partnership: Addressing sibling adjustment to childhood cancer.

2015 ◽  
Vol 33 (1) ◽  
pp. 61-67 ◽  
Author(s):  
Kristin A. Long ◽  
Melanie Goldish ◽  
E. Anne Lown ◽  
Nancy L. Ostrowski ◽  
Melissa A. Alderfer ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Lessons Learned ◽  
Sibling Adjustment

scholarly journals Modeling Sustainable, National, Regional and Local Healthcare Systems Based on Childhood Cancer Shared-Care Networks in LMICS

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 83s-83s
Author(s):  
P. Freccero ◽  
M. Collington ◽  
T. Eden ◽  
L. Burns ◽  
L. Renner ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Pediatric Oncology ◽  
Multidisciplinary Team ◽  
The Philippines ◽  
Patient Data ◽  
Shared Care ◽  
Lessons Learned ◽  
Hospital Administration ◽  
Care Network ◽  
Good Communication

Background: World Child Cancer (WCC) has been working in partnership with pediatric oncology programs in low-middle income countries (LMICs) to support improved services for children with cancer. Central to the success of services is the development of effective shared-care networks situated to match population centers. Literature on how to develop shared-care networks in LMICs does not currently exist. Aim: Modeling sustainable national, regional and local health systems based on childhood cancer shared-care networks in LMICs. Methods: The model was developed through learning from a 3 year UK Government (DFID) funded program in Ghana and Bangladesh and lessons shared from WCC-funded programs in Myanmar and the Philippines. A workshop was held focusing on lessons learned from practitioners representing shared-care networks in different stages of development to identify key elements and steps necessary to build a shared-care network. Results: The overarching themes of the model are; good communication, health partnerships (twinning) and funding. A successful shared-care network must have a strong hub hospital at its center which requires a doctor with training and some experience in pediatric oncology, a committed multidisciplinary team, dedicated bed space, provision for training, patient data accurately recorded, essential medicines available and research opportunities accessible. A health partnership with an external developed center is beneficial. A tangible plan, developed treatment guidelines and protocols, measurable outcomes and financial support are needed for development into a center of excellence. Support would ideally be available for patients and families, to include accommodation, treatment costs, food and transport. Each shared-care center needs an interested doctor, a basic multidisciplinary team, some ward space for oncology patients and the support of the hospital administration. Patient data needs to be stored and there must be a close relationship with the hub center. A development plan is outlined and services provided should replicate the hub as well as resources allow. Major challenges include obtaining support from the hospital administration, and even more importantly, government policies and financing for such developments. Collaborative working and good communication are emphasized by using the same treatment protocols, developing two-way referral systems and sharing challenges and successes. The overarching principle of sustainability requires availability of training within the system and funding. Conclusion: This model can be shared to enable others in LMICs to access the information and inform their systems development. While the model is not exhaustive and requires further research, it represents an important first step with lessons learned from practitioners with experience. The inclusion of such practitioners in the process of developing this model is essential for sustainability.

scholarly journals Cumulative family risk predicts sibling adjustment to childhood cancer

Cancer ◽  
2013 ◽  
Vol 119 (13) ◽  
pp. 2503-2510 ◽  
Author(s):  
Kristin A. Long ◽  
Anna L. Marsland ◽  
Melissa A. Alderfer
Keyword(s):  
Childhood Cancer ◽  
Family Risk ◽  
Sibling Adjustment

Putting pediatric palliative care in prime time.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 68-68
Author(s):  
Rebecca A Kirch ◽  
Christina K Ullrich
Keyword(s):  
Palliative Care ◽  
Childhood Cancer ◽  
Consumer Research ◽  
Quality Care ◽  
Essential Element ◽  
Lessons Learned ◽  
Pediatric Palliative Care ◽  
Cancer Society ◽  
Early Integration ◽  
Care Experience

68 Background: For patients and families at any age and stage, treating the symptoms and stress of cancer is as important as treating the disease. Palliative care has hit its stride as one of the nation’s fastest growing health care trends, with a robust evidence base, new quality standards, increasing awareness and understanding, and a related public policy agenda. This momentum positions pediatric palliative care as an essential aspect of advancing childhood cancer survivorship with high quality of life – particularly important for children given the documented symptoms, late effects and disabling conditions they experience into adulthood and across their lifetime. This oral presentation will describe pediatric palliative care’s prominent role in addressing the challenges of childhood cancer and survivorship across the continuum, providing practical clinical case study context and highlights of consumer research findings and an advocacy agenda helping address palliative care’s “identity problem” that affects access to quality care. Methods: This presentation provides practical information for integrating palliative care to benefit children and families, including lessons learned through implementation of early pediatric palliative care alongside disease-directed treatment under the Concurrent Care for Children Requirement and other initiatives. It will also identify available resources for communicating about palliative care based on consumer research from the American Cancer Society and Center to Advance Palliative Care. Results: This presentation will inform and inspire person-centered and family-focused activities to advance early integration of palliative care in research and clinical practice. It will also highlight opportunities for active involvement in the QOL national movement to improve quality cancer care. Conclusions: Audience will understand benefits of pediatric palliative care and strategies supporting its delivery through the pediatric concurrent care experience in oncology. They will also gain improved proficiency in communicating about palliative care, and will be well-positioned to engage in the QOL legislative campaign to bring palliative care everywhere as an essential element of quality care.

scholarly journals Strategies to Prevent Anthracycline-Related Congestive Heart Failure in Survivors of Childhood Cancer

2012 ◽  
Vol 2012 ◽  
pp. 1-8 ◽  
Author(s):  
Saro H. Armenian ◽  
Sarah K. Gelehrter ◽  
Eric J. Chow
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Cardiovascular Complications ◽  
Lessons Learned ◽  
Current State ◽  
Limited Experience ◽  
Prevention Studies ◽  
Survivors Of Childhood Cancer ◽  
Long Term Survivors

Cardiovascular complications are a leading cause of therapy-related morbidity and mortality in long-term survivors of childhood malignancy. In fact, childhood cancer survivors are at a 15-fold risk of developing CHF compared to age-matched controls. There is a strong dose-dependent association between anthracycline exposure and risk of CHF, and the incidence increases with longer followup. Outcome following diagnosis of CHF is generally poor, with overall survival less than 50% at 5 years. The growing number of childhood cancer survivors makes it imperative that strategies be developed to prevent symptomatic heart disease in this vulnerable population. We present here an overview of the current state of knowledge regarding primary, secondary, and tertiary prevention strategies for childhood cancer survivors at high risk for CHF, drawing on lessons learned from prevention studies in nononcology populations as well as from the more limited experience in cancer survivors.

scholarly journals Establishing a Childhood Cancer Survivorship Program in Rwanda

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 87s-87s
Author(s):  
F. Rubagumya ◽  
L. Greenberg ◽  
A. Manirakiza ◽  
A. Kanyamuhunga ◽  
A. Manirakiza ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Cancer Survivorship ◽  
Childhood Cancer Survivors ◽  
Lessons Learned ◽  
Increased Risk ◽  
Childhood Cancer Survivorship ◽  
Set Up

Background: Over 80% of children diagnosed with cancer survive in high-income countries (HICs). While the survival rate remains poor in low- and middle-income countries (LMICs) such as Rwanda, a growing number of children with cancer are surviving to adulthood. These children and young adults will face an increased risk of secondary cancers and late complications from their curative treatment. Cancer centers in HICs have established Long Term Survivorship (LTS) programs to cater for childhood cancer survivors and to capture these complications and/or recurrences at an early stage. They also address the more complex psychological and social aspects of surviving cancer in childhood. Aims: To develop an LTS program in Rwanda, initial training will take place in Botswana where a pediatric hematology-oncology (PHO) program was established at the national referral hospital, Princess Marina Hospital (PMH), in 2007. This training program will allow successful methods and lessons learned from the development of an LTS program in Botswana to establish a similar program in Rwanda with ongoing bidirectional collaboration. Methods: The Texas Children's Cancer and Hematology Centers (TXCH) Global Hematology-Oncology Pediatric Excellence (HOPE) program in Botswana is the only provider of PHO care in the country, provided at PMH, through a partnership with the Botswana government. The program has over 130 childhood cancer survivors in active follow-up. A one-month bench-marking visit will be conducted. During this period, Dr. Rubagumya will spend time with the medical director of the program learning how the LTS program was established and current operations. He will spend time with clinicians during consultations to understand the scope of tests requested, frequently asked questions across all parties: clinicians, survivors and/or caretakers and use of technology to aid in the management of LTS patients. Focused interviews of clinicians, patients, caregiver and administration will be conducted to further understand the challenges of the pediatric cancer survivors and the development of an LTS program in an LMIC face. Results: After this month visit, critical areas of knowledge transfer will include: how to set up a childhood cancer survivorship programs; methods for sustainable operation of a childhood cancer LTS program, and how to help childhood cancer survivors navigate health care systems. A similar model will be established in Rwanda. Long-term mentorship with Botswana colleagues will help to build Rwanda's first LTS. Conclusion: Survivors involved in dedicated LTS follow-up care have better health outcomes. This indicates the need for life long survivorship care. There is a dearth of data on how to establish and operate a childhood cancer LTS program in LMIC settings. Lessons learned through this program will guide us on how to set up such program in Rwanda.

scholarly journals Childhood cancer registries in Ontario, Canada: Lessons learned from a comparison of two registries

2003 ◽  
Vol 105 (1) ◽  
pp. 88-91 ◽  
Author(s):  
Mark L. Greenberg ◽  
Ronald D. Barr ◽  
Bruna DiMonte ◽  
Eva McLaughlin ◽  
Corin Greenberg
Keyword(s):  
Childhood Cancer ◽  
Cancer Registries ◽  
Lessons Learned

Lessons learned from the analysis of P53 in familial and childhood cancer

1993 ◽  
Vol 29 ◽  
pp. S14
Author(s):  
H Kovar ◽  
A Auinger ◽  
G Jug ◽  
D Aryee ◽  
K Pillwein ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Lessons Learned

Lessons Learned From Coaching Postsecondary Students With Traumatic Brain Injury

2020 ◽  
Vol 5 (1) ◽  
pp. 88-96
Author(s):  
Mary R. T. Kennedy
Keyword(s):  
College Students ◽  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Sense Of Self ◽  
Scientific Evidence ◽  
Sudden Onset ◽  
Lessons Learned ◽  
Speech Language Pathologists ◽  
The Brain ◽  
Exhaustive List

Purpose The purpose of this clinical focus article is to provide speech-language pathologists with a brief update of the evidence that provides possible explanations for our experiences while coaching college students with traumatic brain injury (TBI). Method The narrative text provides readers with lessons we learned as speech-language pathologists functioning as cognitive coaches to college students with TBI. This is not meant to be an exhaustive list, but rather to consider the recent scientific evidence that will help our understanding of how best to coach these college students. Conclusion Four lessons are described. Lesson 1 focuses on the value of self-reported responses to surveys, questionnaires, and interviews. Lesson 2 addresses the use of immediate/proximal goals as leverage for students to update their sense of self and how their abilities and disabilities may alter their more distal goals. Lesson 3 reminds us that teamwork is necessary to address the complex issues facing these students, which include their developmental stage, the sudden onset of trauma to the brain, and having to navigate going to college with a TBI. Lesson 4 focuses on the need for college students with TBI to learn how to self-advocate with instructors, family, and peers.

Experiences With and Lessons Learned From Developing, Implementing, and Evaluating a Support Program for Older Hearing Aid Users and Their Communication Partners in the Hearing Aid Dispensing Setting

2020 ◽  
Vol 29 (3S) ◽  
pp. 638-647 ◽  
Author(s):  
Janine F. J. Meijerink ◽  
Marieke Pronk ◽  
Sophia E. Kramer
Keyword(s):  
Large Scale ◽  
Hearing Aid ◽  
Critical Discussion ◽  
Lessons Learned ◽  
Research Note ◽  
Support Program ◽  
Large Sample Size ◽  
Long Term Effects ◽  
Communication Program ◽  
Communication Partners

Purpose The SUpport PRogram (SUPR) study was carried out in the context of a private academic partnership and is the first study to evaluate the long-term effects of a communication program (SUPR) for older hearing aid users and their communication partners on a large scale in a hearing aid dispensing setting. The purpose of this research note is to reflect on the lessons that we learned during the different development, implementation, and evaluation phases of the SUPR project. Procedure This research note describes the procedures that were followed during the different phases of the SUPR project and provides a critical discussion to describe the strengths and weaknesses of the approach taken. Conclusion This research note might provide researchers and intervention developers with useful insights as to how aural rehabilitation interventions, such as the SUPR, can be developed by incorporating the needs of the different stakeholders, evaluated by using a robust research design (including a large sample size and a longer term follow-up assessment), and implemented widely by collaborating with a private partner (hearing aid dispensing practice chain).

Sign in / Sign up

Export Citation Format

Share Document