Unspoken ambivalence in kinship obligation in living donation

2018 ◽  
Vol 28 (3) ◽  
pp. 250-255 ◽  
Author(s):  
Colin M. E. Halverson ◽  
Megan Crowley-Matoka ◽  
Lainie Friedman Ross
Keyword(s):  
Decision Making ◽  
Health Care Providers ◽  
Social Relations ◽  
Qualitative Interviews ◽  
External Pressure ◽  
Living Donation ◽  
Care Providers ◽  
First Degree Relatives ◽  
Biological Compatibility ◽  
Decision Making Processes

Background: Traditionally, living kidney donors were first-degree relatives due to both greater biological compatibility and concerns about extrafamilial motivation. Because familial relationships often entail distinctive experiences of moral obligation, health-care providers must be attentive to potential undue influences on intrafamilial donor decision-making processes to ensure that decisions are voluntary. Methods: Qualitative interviews were conducted with 20 individuals who donated kidneys to first-degree relatives and subsequently developed end-stage renal disease themselves. Findings: We analyze the different influences kinship obligations had on participants’ decision-making processes. Although participants described their decision to donate as obvious, an appropriate kin response, and free from external pressure, they indirectly expressed some ambivalence—both by their description of the rapidity of the process and in their concern about exposing an intimate to the risks of living donation. Discussion: Our data uncovered an asymmetry. Although our participants claimed that they would donate again, none received a living donor kidney. Our data also highlight the moral significance of the interdependence of donor and recipient in intrafamilial kidney donation and its impact on the range of voluntary choices as perceived by the donor. Their decision-making must be understood as embedded within a network of intimate social relations.

scholarly journals Identifying Parents Who Are Amenable to Pro-Vaccination Conversations

2015 ◽  
Vol 2 ◽  
pp. 2333794X1561633 ◽  
Author(s):  
Emily K. Brunson
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Health Care Providers ◽  
Interview Data ◽  
Children's Health ◽  
Children’S Health ◽  
Care Providers ◽  
Initial Decision ◽  
Decision Making Processes ◽  
Children’S Health Care

While health care providers are often cited as parents’ most trusted source for information and advice about vaccination, parents differ in their level of receptiveness to pro-vaccination conversations. The purpose of this research was to identify points in individual parents’ decision-making processes when parents are particularly open to receiving information and advice from their children’s health care providers. Interview data were collected from 20 mothers and 5 couples. Analysis of these data suggested 3 primary circumstances when parents were particularly open to receiving information and advice: during parents’ initial decision-making, as parents continued to assess vaccination options, and during particular circumstances that prompted parents to reconsider previously made vaccination choices. These results provide a mechanism for providers to identify parents who may be particularly receptive to pro-vaccination conversations. By prioritizing conversations with parents at one of these points, health care providers’ efforts at promoting vaccination may be more effective.

Exploring Provider Reactions to Decision Aid Distribution and Shared Decision Making

2016 ◽  
Vol 37 (1) ◽  
pp. 113-126 ◽  
Author(s):  
Clarissa Hsu ◽  
David T. Liss ◽  
Dominick L. Frosch ◽  
Emily O. Westbrook ◽  
David Arterburn
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Health Care Providers ◽  
Decision Aid ◽  
Qualitative Interviews ◽  
Accurate Information ◽  
Shared Decision ◽  
Care Providers ◽  
Provider Attitudes ◽  
Provider Perspectives

Background. A critical component of shared decision making (SDM) is the role played by health care providers in distributing decision aids (DAs) and initiating SDM conversations. Existing literature indicates that decisions about designing and implementing DAs must take provider perspectives into account. However, little is known about how differences in provider attitudes across specialties may impact DA implementation and how provider attitudes may shift after DA implementation. Group Health’s Decision Aid Implementation project was carried out in six specialties using 12 video-based DAs for preference-sensitive conditions; this study focused on two of the six specialties. Design. In-depth, qualitative interviews with specialty care providers in two specialties—orthopedics and cardiology—at two time points during DA implementation. Data were analyzed using a thematic analysis approach. Results. We interviewed 19 care providers in orthopedics and cardiology. All respondents believed that providing patients with accurate information on their health conditions and treatment options was important and that most patients wanted an active role in decision making. However, respondents diverged in decision-making styles and views on the practicality and appropriateness of using the DAs and SDM. For example, cardiology specialists were ambivalent about DAs for coronary artery disease because many viewed DAs and SDM as unnecessary or inappropriate for this clinical condition. Provider attitudes towards DAs and SDM were generally stable over two years. Limitations. Limitations include a lack of patient perspectives, social desirability bias, and possible selection bias. Conclusions. Successfully implementing DAs in clinical practice to promote SDM requires addressing individual provider attitudes, beliefs, and knowledge of SDM by specialty. During DA development and implementation, providers should be asked for input about the specific conditions and care processes that are most appropriate for SDM.

scholarly journals The Work of Managing Multiple Myeloma and its Implications for Treatment-related Decision Making: A Qualitative Study of Patient and Caregiver Experiences.

2020 ◽  
Author(s):  
Cheryl Pritlove ◽  
Mobin Jassi ◽  
Bridget Burns ◽  
Arleigh McCurdy
Keyword(s):  
Decision Making ◽  
Multiple Myeloma ◽  
Health Care Providers ◽  
Qualitative Interviews ◽  
Medical Knowledge ◽  
Treatment Decisions ◽  
Comparative Approach ◽  
Care Providers ◽  
Oral Agents ◽  
The Impact

Abstract Purpose: Advancements in multiple myeloma (MM) therapy, including the introduction of oral agents, has produced a shift in the delivery of care from hospital to home. We sought to understand the impact of this shift on patients’ and caregivers’ management work and their treatment-related decision making. Methods: Qualitative interviews were conducted with 16 MM patients and 8 caregivers. Interviews were coded for emergent themes and patterns and a constant comparative approach was used to identify important similarities and differences within and between interviews.Results: Patient and caregiver participants described four types of work, including the work of accruing and personalizing medical knowledge, illness-related work in the hospital, illness-related work in the home, and psychosocial and relational management. They illuminated the physical, psychological, social and relational toll of this work and traced a pathway through which work informed their treatment-related decisions, sometimes in ways that conflicted with their preferences for treatment. Conclusions: The work involved in managing MM, its treatment, and side-effects can inform the treatment decisions that patients and caregivers make. We must continue to find meaningful ways for patients and caregivers to discuss goals of care and treatment throughout the cancer trajectory, as well as support health care providers in the delivery of person-centred care.Implications for Cancer Survivors: With an increasing emphasis on the importance of shared decision-making in MM, an improved understanding of the factors that frame patient’s and caregiver’s treatment decisions will be paramount to ensuring meaningful and high-quality patient-centered care.

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 Feasibility and Assessment of a Cascade Traceback Screening Program (FACTS): Protocol for a Multisite Study to Implement and Assess an Ovarian Cancer Traceback Cascade Testing Program

2021 ◽  
Vol 11 (6) ◽  
pp. 543
Author(s):  
Anna DiNucci ◽  
Nora B. Henrikson ◽  
M. Cabell Jonas ◽  
Sundeep Basra ◽  
Paula Blasi ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Genetic Testing ◽  
Health Care Providers ◽  
Screening Program ◽  
Qualitative Interviews ◽  
Care Providers ◽  
Genetic Privacy ◽  
Program Outcomes ◽  
Cascade Testing ◽  
Program Costs

Ovarian cancer (OVCA) patients may carry genes conferring cancer risk to biological family; however, fewer than one-quarter of patients receive genetic testing. “Traceback” cascade testing —outreach to potential probands and relatives—is a possible solution. This paper outlines a funded study (U01 CA240747-01A1) seeking to determine a Traceback program’s feasibility, acceptability, effectiveness, and costs. This is a multisite prospective observational feasibility study across three integrated health systems. Informed by the Conceptual Model for Implementation Research, we will outline, implement, and evaluate the outcomes of an OVCA Traceback program. We will use standard legal research methodology to review genetic privacy statutes; engage key stakeholders in qualitative interviews to design communication strategies; employ descriptive statistics and regression analyses to evaluate the site differences in genetic testing and the OVCA Traceback testing; and assess program outcomes at the proband, family member, provider, system, and population levels. This study aims to determine a Traceback program’s feasibility and acceptability in a real-world context. It will account for the myriad factors affecting implementation, including legal issues, organizational- and individual-level barriers and facilitators, communication issues, and program costs. Project results will inform how health care providers and systems can develop effective, practical, and sustainable Traceback programs.

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.

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.

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