Advertisement

Topics

Timely End-of-Life Communication to Parents of Children With Brain Tumors

2014-08-27 04:00:18 | BioPortfolio

Summary

A national priority for health care providers is to initiate early communication about palliative and end-of-life care (PC/EOL) for children with a poor prognosis. Communication about prognosis and advanced care planning is critical to empowering parents to make decisions about PC/EOL for their children. A single-group study to refine and pilot test a PC/EOL communication intervention is entitled, Communication Plan: Early through End of Life (COMPLETE). COMPLETE is designed to be delivered during parent meetings and features: (a) a physician-nurse (MD/RN) team approach to PC/EOL communication; (b) printed visual aids and parent resource forms; and (c) hope and non-abandonment messages tailored by a MD/RN team to their communication style and parental preferences for information. During Phase I, an interdisciplinary approach involving nurses, physicians, PC/EOL expert consultants, and bereaved-parent consultants met to develop a standardized protocol and training procedures. During Phase II, this protocol will be evaluated with 24 parents and MD/RN teams. The investigators will evaluate parental outcomes regarding the COMPLETE's influence on: (a) information needs, emotional needs/resources, appraisal of MD/RN information and of symptom management; and (b) parental distress, uncertainty, decision regret, hope, satisfaction with MD/RN communication, and advance care planning over time. Findings from this study address NIH priorities related to: 1) an underserved population (i.e., parents of children with brain tumors); 2) an under-examined ethical concern about early integration of PC/EOL communication for parents of children with poor prognosis; 3) improved communication about PC/EOL among physicians, nurses, and parents; and 4) the potential for changing health care practice.

Description

Physicians and nurses (MDs/ RNs) struggle to communicate effectively about palliative and end-of-life (PC/EOL) care with parents when their child's prognosis is poor, and rarely collaborate as a team in this difficult process. The aim of this study was to develop and evaluate training strategies for MD/RN dyads to collaboratively deliver a PC/EOL communication intervention called, Communication Plan: Early through End of Life (COMPLETE), to 24 parents of children with brain tumors. During Phase I, training strategies were based on principles from a Relationship Centered Care perspective. The training was delivered to 3 pediatric neuro-oncologists and 5 oncology nurses by a team of parent advisors and a team of expert consultants (i.e., medical ethics, communication, and PC/EOL). Our 2-day training included 4 modules: family assessment, goal directed treatment planning, anticipatory guidance, and staff communication and follow-up. Each module included: didactic content, small group reflective sessions, and communication skills practice with bereaved parent. Evaluations included dichotomous (agree/disagree) ratings and qualitative comments on didactic content, small group reflection, and skills practice for each module. Helpful aspects of our training strategies included: parent advisers' insights, emotional presence, emphasis on hope and non-abandonment messages, written materials to facilitate PC/EOL communication, and a team approach. For this presentation we will discuss insights gained regarding use of a parent advisory panel, strategies to help the MD/RN dyads feel comfortable working as a team to communicate with parents, and ways to improve training procedures and our intervention.

Pediatric oncology physicians and nurses found PC/EOL care communication training strategies and content as helpful and useful. During Phase II of our study, our PC/EOL care communication intervention is planned to be implemented and evaluated with 24 enrolled parents. If effective, this intervention will facilitate integration of quality PC care practices into the care of children with brain tumors.

Study Design

Observational Model: Family-Based, Time Perspective: Prospective

Conditions

Palliative Care

Location

Indiana University School of Nursing
Indianapolis
Indiana
United States
46212

Status

Recruiting

Source

Barnes-Jewish Hospital Foundation

Results (where available)

View Results

Links

Published on BioPortfolio: 2014-08-27T04:00:18-0400

Clinical Trials [317 Associated Clinical Trials listed on BioPortfolio]

PROject - Supportive and Palliative Care and INnOvation - Antwerp (Pro-Spinoza)

It is important to provide high quality palliative care to all patients with a non-curable and life-limiting condition. The Care Pathway for Primary Palliative Care (CPPPC) provides tools ...

Palliative Care in the ICU

The study compares early palliative care consultation to standard of care in the medical intensive care unit (ICU). The study will assess if the intervention leads to an increased proporti...

Palliative Care Comprehensive Tool: A Pilot Randomized Controlled Trial

The purpose of this study is to introduce a palliative care tool that will result in quality, comprehensive management of patients. We anticipate that improving quality and comprehensivene...

Multidisciplinary Inpatient Palliative Care Intervention

Palliative care is believed to improve care of patients with life-limiting illnesses. This study evaluated the impact of a multi-center randomized trial of a palliative care team intervent...

Technology-enhanced Transitional Care for Rural Palliative Care Patients: A Pilot Study

The purpose of this pilot study is to develop and test a technology-enhanced transitional palliative care (TPC) intervention for patients and caregivers living in rural locations. The inve...

PubMed Articles [10242 Associated PubMed Articles listed on BioPortfolio]

A Call for Integrated and Coordinated Palliative Care.

Integrated palliative care is viewed as having the potential to improve service coordination, efficiency, and quality outcomes for patients and family carers. However, the majority of Canadians do not...

A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals.

Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative ...

Palliative care needs assessment in chronic heart failure.

The unmet palliative care needs of patients with chronic heart failure (CHF) are well known. Palliative care needs assessment is paramount for timely provision of palliative care. The present review p...

Palliative care for patients with Parkinson's disease: study protocol for a mixed methods study.

Parkinson's disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palli...

Re-framing Global palliative care advocacy for the Sustainable Development Goal era: a qualitative study of the views of international palliative care experts.

The World Health Assembly Palliative Care Resolution in 2014 and the inclusion of palliative care within the Sustainable Development Goals raised optimism that palliative care would no longer be a per...

Medical and Biotech [MESH] Definitions

A nursing specialty concerned with care of patients facing serious or life-threatening illnesses. The goal of palliative nursing is to prevent and relieve suffering, and to support the best possible quality of life for patients and their families. Hospice nursing is palliative care for people in their final stages of life.

Care alleviating symptoms without curing the underlying disease. (Stedman, 25th ed)

Facilities or services which are especially devoted to providing palliative and supportive care to the patient with a terminal illness and to the patient's family.

A branch of medicine concerned with preventing and relieving the suffering of patients in any stage of disease. Its focus is on comprehensive care and improving the quality of all areas of the patient's life.

Organization of medical and nursing care according to the degree of illness and care requirements in the hospital. The elements are intensive care, intermediate care, self-care, long-term care, and organized home care.

More From BioPortfolio on "Timely End-of-Life Communication to Parents of Children With Brain Tumors"

Advertisement
Quick Search
Advertisement
Advertisement

 

Relevant Topics

Nutrition
Within medicine, nutrition (the study of food and the effect of its components on the body) has many different roles. Appropriate nutrition can help prevent certain diseases, or treat others. In critically ill patients, artificial feeding by tubes need t...

Palliative Care
Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the ...

Pediatrics
Pediatrics is the general medicine of childhood. Because of the developmental processes (psychological and physical) of childhood, the involvement of parents, and the social management of conditions at home and at school, pediatrics is a specialty. With ...


Searches Linking to this Trial