Caregiver Decision-Making for Terminally Ill Children: A Qualitative Study

2019 ◽  
Vol 35 (3) ◽  
pp. 161-166
Author(s):  
Emily Pinto Taylor ◽  
Benjamin Doolittle
Keyword(s):  
Decision Making ◽  
Health Care Providers ◽  
Critical Role ◽  
Terminally Ill ◽  
Medical Decision ◽  
Medical Team ◽  
Care Providers ◽  
Medical Providers ◽  
Team Members ◽  
Institutional Review

Introduction: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children. Methods: Semistructured interviews were conducted among caregivers of terminally ill children. Participation was voluntary and confidential. The institutional review board approved the protocol. Transcripts were read and coded by 2 authors using inductive, concurrent analysis to reach thematic saturation and generate common themes. Results: Nine interviews were completed, discussing the care of 10 children. Caregivers described decision-making as impacted by their relationships with medical providers of 2 distinct types—trusting and nontrusting. Trusting relationships were notable for a longitudinal relationship with medical staff who empowered caregivers and treated the patient primarily as a child. Nontrusting relationships were noted when the medical team objectified their child as a “patient” and appeared to withhold information. Also, nontrusting relationships occurred when caregivers felt frustration with needing to educate health-care providers about their child’s illness. Conclusion: Decision-making by caregivers of terminally ill children is complex, and supporting families in this process is a critical role of all medical providers. A trusting relationship with medical team members was identified as an effective tool for well-supported decision-making, which can potentially alleviate the suffering of the child and distress of the caregivers during this emotionally charged time.

scholarly journals Patient Portal, Patient-Generated Images, and Medical Decision-Making in a Pediatric Ambulatory Setting

2020 ◽  
Vol 11 (05) ◽  
pp. 764-768
Author(s):  
Karolin Ginting ◽  
Adrienne Stolfi ◽  
Jordan Wright ◽  
Abiodun Omoloja
Keyword(s):  
Decision Making ◽  
Health Care Providers ◽  
Medical Decision Making ◽  
Pediatric Population ◽  
Private Insurance ◽  
Medical Decision ◽  
Ambulatory Setting ◽  
Patient Portal ◽  
Care Providers ◽  
Patient Portals

Abstract Background Electronic health record (EHR) patient portals are a secure electronic method of communicating with health care providers. In addition to sending secure messages, images, and videos generated by families can be sent to providers securely. With the widespread use of smart phones, there has been an increase in patient-generated images (PGI) sent to providers via patient portals. There are few studies that have evaluated the role of PGI in medical decision-making. Objectives The study aimed to characterize PGI sent to providers via a patient portal, determine how often PGI-affected medical decision-making, and determine the rate of social PGI sent via patient portal. Methods A retrospective chart review of PGI uploaded to a children's hospital's ambulatory patient portal from January 2011 to December 2017 was conducted. Data collected included patient demographics, number and type of images sent, person sending images (patient or parent/guardian), and whether an image-affected medical decision-making. Images were classified as medical related (e.g., blood glucose readings and skin rashes), nonmedical or administrative related (e.g., medical clearance or insurance forms), and social (e.g., self-portraits and camp pictures). Results One hundred forty-three individuals used the portal a total of 358 times, sending 507 images over the study period. Mean (standard deviation) patient age was 9.5 (5.9) years, 50% were females, 89% were White, and 64% had private insurance. About 9% of images were sent directly by patients and the rest by parents/guardians. A total of 387 (76%) images were sent for medical related reasons, 20% for nonmedical, and 4% were deemed social images. Of the 387 medical related images, 314 (81%) affected medical decision-making. Conclusion PGI-affected medical decision-making in most cases. Additional studies are needed to characterize use of PGI in the pediatric population.

Reflections on Shared Decision Making

2018 ◽  
Vol 159 (5) ◽  
pp. 809-810
Author(s):  
John J. Chi
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Shared Decision Making ◽  
Health Care Providers ◽  
Patient Adherence ◽  
Medical Decision ◽  
Shared Decision ◽  
Care Providers ◽  
Patient Centered ◽  
Values And Beliefs

Decisions about medical and surgical treatment can be complex—even for health care providers, who can struggle with which treatment option to offer their patients. In the current landscape of patient-centric value-based health care, the need for appropriate medical decision making to maximize treatment outcomes is evermore important. Shared decision making is a process in which clinicians and patients make decisions together using the best available evidence while accounting for the patients’ values and beliefs. A patient-centered approach has been associated with improved patient satisfaction, clinical outcomes, and patient adherence to treatment. Only by taking a collaborative care approach among patients, physicians, and caregivers can we hope to deliver the best possible care and improve our outcomes for each and every patient.

The Need for Nurse Training to Promote Improved Patient-Provider Communication for Patients With Complex Communication Needs

2013 ◽  
Vol 22 (2) ◽  
pp. 112-119 ◽  
Author(s):  
Debora Downey ◽  
Mary Beth Happ
Keyword(s):  
Health Care Providers ◽  
Communication Disorders ◽  
Provider Communication ◽  
Nurse Training ◽  
Care Providers ◽  
Speech Language Pathologists ◽  
Complex Communication Needs ◽  
Team Members ◽  
Patient Provider Communication ◽  
Communication Needs

Abstract Hospitalized patients across the age continuum often present with complex communication needs (CCN) due to motor, sensory, cognitive, and linguistic barriers they may experience during their admission. Although hospitals recognize the need to enhance communication to improve quality and safety for all patients, the emphasis has been primarily on improving ”care coordination” amongst the health care providers the patient encounters across all points of admission. Most hospitals have yet to focus on improving the patient-provider communication experience, especially for patients with CCN. However, this population no longer can be ignored, as new standards mandate efforts to improve communication for patients with CCN. Nurses, as the team members responsible for continuous care during hospital stays, and speech-language pathologists, as communication disorders specialists, are positioned distinctively to facilitate patient communication and prevent miscommunications between patients and care providers. This article highlights the need to enhance the patient-provider communication experience for patients with CCN. We review the state of nurse training for patients with CCN, discuss the role speech-language pathologists can play in developing and implementing nurse training protocols, and outline basic elements nurse training modules should include.

scholarly journals Improving Communications With Patients and Families in Geriatric Care. The How, When, and What

2021 ◽  
Vol 8 ◽  
pp. 237437352110340
Author(s):  
Shirley Chien-Chieh Huang ◽  
Alden Morgan ◽  
Vanessa Peck ◽  
Lara Khoury
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Family Caregivers ◽  
Health Care Providers ◽  
Tertiary Care ◽  
Care Providers ◽  
Telephone Interviews ◽  
Written Information ◽  
Geriatric Unit ◽  
Patient Health

There has been little published literature examining the unique communication challenges older adults pose for health care providers. Using an explanatory mixed-methods design, this study explored patients’ and their family/caregivers’ experiences communicating with health care providers on a Canadian tertiary care, inpatient Geriatric unit between March and September 2018. In part 1, the modified patient–health care provider communication scale was used and responses scored using a 5-point scale. In part 2, one-on-one telephone interviews were conducted and responses transcribed, coded, and thematically analyzed. Thirteen patients and 7 family/caregivers completed part 1. Both groups scored items pertaining to adequacy of information sharing and involvement in decision-making in the lowest 25th percentile. Two patients and 4 family/caregivers participated in telephone interviews in part 2. Interview transcript analysis resulted in key themes that fit into the “How, When, and What” framework outlining the aspects of communication most important to the participants. Patients and family/caregivers identified strategic use of written information and predischarge family meetings as potentially valuable tools to improve communication and shared decision-making.

scholarly journals Plain Language Summary: Opioid Prescribing for Analgesia After Common Otolaryngology Operations

2021 ◽  
Vol 164 (4) ◽  
pp. 704-711
Author(s):  
Samantha Anne ◽  
Sandra A. Finestone ◽  
Allison Paisley ◽  
Taskin M. Monjur
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Clinical Practice ◽  
Pain Management ◽  
Health Care Providers ◽  
Clinical Practice Guideline ◽  
Shared Decision ◽  
Care Providers ◽  
Plain Language ◽  
Opioid Prescribing

This plain language summary explains pain management and careful use of opioids after common otolaryngology operations. The summary applies to patients of any age who need treatment for pain within 30 days after having a common otolaryngologic operation (having to do with the ear, nose, or throat). It is based on the 2021 “Clinical Practice Guideline: Opioid Prescribing for Analgesia After Common Otolaryngology Operations.” This guideline uses available research to best advise health care providers, and it includes recommendations that are explained in this summary. Recommendations may not apply to every patient but can be used to facilitate shared decision making between patients and their health care providers.

Life Themes: A Method to Understand Terminal Illness

1995 ◽  
Vol 31 (3) ◽  
pp. 189-206 ◽  
Author(s):  
Debbie Messer Zlatin
Keyword(s):  
Health Care ◽  
Health Care Costs ◽  
Health Care Providers ◽  
Terminal Illness ◽  
Terminally Ill ◽  
Care Providers ◽  
Incurable Cancer ◽  
Doctor Patient Communication ◽  
The Patient’S View ◽  
Care Costs

As health care costs in general soar, the high cost of terminal care is questioned. Yet little is known about what kinds of medical care terminally ill persons, themselves, want. To explore the patient's view, I conducted a qualitative study of eight patients with incurable cancer to answer the question, “How do terminally ill persons understand their illnesses and treatments?” Analysis of interview transcripts indicated that study participants created illness-understandings within the context of their daily life experiences via life themes. Since life themes integrate and give meaning to illness events in both emic and etic ways and help to explain patients' coping strategies, it is recommended that health care providers elicit patients' life themes and use them in their approaches to diagnosis and treatment. The possible benefits of the life theme method are more balanced doctor/patient communication, improved patient satisfaction and quality of life, and the containment of health care costs.

scholarly journals An Integrative Review of the Influences on Decision-Making of Young People About Human Papillomavirus Vaccine

2018 ◽  
Vol 35 (1) ◽  
pp. 39-50
Author(s):  
Helen Sisson ◽  
Yvonne Wilkinson
Keyword(s):  
Decision Making ◽  
Human Papillomavirus ◽  
Parental Involvement ◽  
Health Care Providers ◽  
Hpv Vaccine ◽  
Hpv Infection ◽  
School Nurses ◽  
Human Papillomavirus Vaccine ◽  
Care Providers ◽  
To Receive

The human papillomavirus (HPV) vaccine is a key intervention in the prevention of HPV infection and associated cancers. This review emphasizes the importance of understanding what influences decision-making about this vaccine. Guided by the work of Whittemore and Knafl, and Pluye and Hong, we identified 25 studies, from which four prominent themes emerged: fear and risk, pain, parental involvement, and involvement of others. Fear of cervical cancer was a strong motivation to receive the vaccine, and the extent of parental involvement also had an impact on decision-making. Recommendations to receive the vaccine by health-care providers were also an important influence. School nurses are fundamental to the promotion and delivery of the HPV vaccine and should stress the significant role that it plays in the prevention of cancer. Additionally, school nurses should ensure that discussions about HPV infection and vaccine include parents where appropriate and should distinctly recommend vaccination to those eligible.

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