Life-limiting fetal conditions and pregnancy continuation: parental decision-making processes

2021 ◽  
pp. bmjspcare-2020-002857
Author(s):  
Erin Denney-Koelsch ◽  
Denise Cote-Arsenault
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Medical Information ◽  
Healthcare Providers ◽  
Shared Decision ◽  
Parental Decision ◽  
Parental Decision Making ◽  
Case Comparison ◽  
Theme Identification ◽  
Iterative Coding

ObjectivesWhen parents are facing a life-limiting fetal condition (LLFC), decision making about prenatal and neonatal care is very stressful. To participate in successful shared decision making, interdisciplinary care teams need to understand factors that parents consider and the process by which they make decisions about care of their baby.MethodsThis study reports on findings about parental decision making from a larger longitudinal, naturalistic study of parents’ experiences of continuing pregnancy with an LLFC. Mothers and fathers over 18 were interviewed in person, on phone or via video, twice during pregnancy and twice after birth and death. Transcripts were professionally transcribed and verified. Data were analysed with iterative coding and theme identification, using within-case and cross-case comparison.ResultsThirty parents (16 mothers, 13 fathers, 1 lesbian partner) from multiple US states and a range of racial/ethnic backgrounds were interviewed. Parents’ experience with decision making was difficult, stressful and time-sensitive. They described a three-phase process: (1) identifying the decision to be made, (2) conducting a risk–benefit analysis to weigh objective medical information and subjective factors (values and spirituality, impact on self, partner, baby and the other children) and (3) making a decision. Parents considered diagnostic and prognostic certainty, likelihood of a good outcome and avoidance of suffering and regrets.ConclusionFor shared-decision making, healthcare providers must discuss objective medical information as well as recognise parents’ subjective values and priorities. This study expands on the literature on parental decision making around the numerous types of decisions after LLFC, informing obstetrics, neonatology and palliative care.

Shared Decision Making

2021 ◽  
Author(s):  
Apurupa Ballamudi ◽  
John Chi
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Medical Information ◽  
Decision Aids ◽  
Treatment Options ◽  
Shared Decision ◽  
Patient Centered ◽  
Risks And Benefits ◽  
Benefit Patient ◽  
Risk And Benefit

Shared decision-making (SDM) is a process in which patients and providers work together to make medical decisions with a patient-centric focus, considering available evidence, treatment options, the patient’s values and goals, and risks and benefits. It is important for all providers to understand how to effectively use SDM in their interactions with patients to improve patients’ experiences throughout their healthcare journey. There are strategies to improve communication between patients and their providers, particularly when communicating quantitative data, risks and benefits, and treatment options. Decision aids (DAs) can help patients understand complex medical information and make an informed decision. This review contains 9 figures, 4 tables and 45 references Key words: Shared decision-making, decision-making, communication, risk and benefit, patient-centered, health literacy, quality of life, decision aids, option grid, pictographs.

scholarly journals Healthcare providers' intentions to engage in an interprofessional approach to shared decision-making in home care programs: A mixed methods study

2013 ◽  
Vol 27 (3) ◽  
pp. 214-222 ◽  
Author(s):  
France Légaré ◽  
Dawn Stacey ◽  
Nathalie Brière ◽  
Kimberley Fraser ◽  
Sophie Desroches ◽  
...  
Keyword(s):  
Decision Making ◽  
Mixed Methods ◽  
Home Care ◽  
Shared Decision Making ◽  
Healthcare Providers ◽  
Mixed Methods Study ◽  
Shared Decision

P002 IBD PARTNERSHIPS: UNDERSTANDING PATIENTS VS. CLINICIANS PERSPECTIVES OF IBD TREATMENT OPTIONS TO IMPROVE SHARED DECISION-MAKING

2020 ◽  
Vol 26 (Supplement_1) ◽  
pp. S51-S51
Author(s):  
Sandra Zelinsky ◽  
Catherine Finlayson
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Focus Groups ◽  
Shared Decision Making ◽  
Healthcare Providers ◽  
Treatment Decisions ◽  
Research Approach ◽  
Shared Decision ◽  
Rural And Urban

Abstract Background The patient is the only constant in the care journey, the person who experiences both processes and the outcomes of care. There is an international shift towards including patients as equal partners in research. Co-producing research with Inflammatory Bowel Disease (IBD) patients to understand their values, needs and priorities when making treatment decisions will potentially improve shared decision-making between IBD patients and their Healthcare Providers (HCPs). To facilitate this process patients and HCPs must have a common understanding of expected medication benefits, risks and the potential impact on quality of life. The information available to facilitate this conversation must be aligned and reflect the priorities that IBD Patients and Healthcare Providers consider when making treatment decisions. Both parties can then share information and work towards an agreement to what treatment plan should be implemented. Aims To understand what matters most to IBD patients when making treatment decisions by conducting a qualitative patient-led peer to peer study which will inform the development of an IBD patient and HCP survey. Methods IBD patients (≥ 18 years of age) were recruited through the IBD clinic at the University of Calgary and via social media. Focus groups were held in three separate provinces (British Columbia, Alberta and Ontario) in both rural and urban locations. The focus groups were facilitated by a Patient Engagement Researcher to alleviate any potential power dynamics and to create a safe space for IBD patients to share their perspectives. A participatory action research approach was used to encourage co-production with participants throughout the focus groups. The focus groups were audio recorded. Flip charts and sticky notes were used for brainstorming and prioritization exercises. All audio and written data were transcribed. Thematic analysis was used to identify emerging themes and patient priorities. Results A total of 21 participants attended the focus groups from both rural and urban locations. Participant diversity ranged in ethnicity and age. Most of the participants were female (18 females and 3 males) of which 4 were biologic naïve and 17 were biologic exposed. The Top 5 IBD Patient Priorities when making treatment decisions are 1) Risks(more serious/long term) 2) Education(Support/Evidence Based Information/Resources) 3) Side Effects(short term/less serious) 4) Efficacy 5) Impact(Quality of Life/ Lifestyle/Logistics). Conclusions Co-producing research ‘with’ and ‘by’ IBD patients helped to generate priorities that matter most to patients when making treatment decisions. The patient priorities will help in the development of an IBD Patient and HCP survey. The results from the two surveys will be compared to understand patient vs. HCP perspectives.

Advance care planning preferences in Hispanic population with cancer in the Bronx.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 6-6
Author(s):  
Jhosselini Cardenas Mori
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Medical Information ◽  
Medical Center ◽  
Treatment Options ◽  
Cancer Center ◽  
Decision Making Process ◽  
Shared Decision ◽  
Hispanic Patients ◽  
Disclosure Of Diagnosis

6 Background: We aim to explore medical information-sharing and decision-making preferences of Hispanic patients in the Bronx. Methods: We are recruiting cancer patients who self-identify as Hispanic and are waiting at the oncology clinic at Montefiore Medical Center Cancer Center before an appointment. Results: To date we have interviewed 110 patients. The majority (60, 52.6%) preferred shared decision-making with their doctors, families or both, while 45 (39.5%) had an active decision-making style. A minority (9, 7.9%) had a passive decision-making style, deferring to their families and only 1 (0.9%) had a passive decision-making style deferring to the physician. The only demographic characteristic that was associated with decision-making preference was language; those who are English-speaking were more likely to endorse an active decision-making style (Chi2 = 7.06, p = 0.029) and less likely to endorse shared decision-making (Chi2 = 6.33, p = 0.042). The majority of patients agreed or strongly agreed that they wanted to hear all of the information regarding their diagnosis, treatment options, treatment expectation and treatment risks and benefits. Conclusions: These results confirm our hypothesis that most Hispanic patients prefer either an active or shared decision-making process rather than a passive decision-making process. Most patients prefer disclosure of diagnosis, prognosis and plan.

scholarly journals Principles of shared decision-making within teams

2015 ◽  
Vol 25 (8) ◽  
pp. 1631-1636 ◽  
Author(s):  
Jeffrey P. Jacobs ◽  
Gil Wernovsky ◽  
David S. Cooper ◽  
Tom R. Karl
Keyword(s):  
Decision Making ◽  
Critical Care ◽  
Cardiac Surgery ◽  
Shared Decision Making ◽  
Risk Model ◽  
Healthcare Providers ◽  
Shared Decision ◽  
Level 3 ◽  
Level 1 ◽  
Level 2

AbstractIn the domain of paediatric and congenital cardiac care, the stakes are huge. Likewise, the care of these children assembles a group of “A+ personality” individuals from the domains of cardiac surgery, cardiology, anaesthesiology, critical care, and nursing. This results in an environment that has opportunity for both powerful collaboration and powerful conflict. Providers of healthcare should avoid conflict when it has no bearing on outcome, as it is clearly a squandering of individual and collective political capital.Outcomes after cardiac surgery are now being reported transparently and publicly. In the present era of transparency, one may wonder how to balance the following potentially competing demands: quality healthcare, transparency and accountability, and teamwork and shared decision-making.An understanding of transparency and public reporting in the domain of paediatric cardiac surgery facilitates the implementation of a strategy for teamwork and shared decision-making. In January, 2015, the Society of Thoracic Surgeons (STS) began to publicly report outcomes of paediatric and congenital cardiac surgery using the 2014 Society of Thoracic Surgeons Congenital Heart Surgery Database (STS-CHSD) Mortality Risk Model. The 2014 STS-CHSD Mortality Risk Model facilitates description of Operative Mortality adjusted for procedural and patient-level factors.The need for transparency in reporting of outcomes can create pressure on healthcare providers to implement strategies of teamwork and shared decision-making to assure outstanding results. A simple strategy of shared decision-making was described by Tom Karl and was implemented in multiple domains by Jeff Jacobs and David Cooper. In a critical-care environment, it is not unusual for healthcare providers to disagree about strategies of management of patients. When two healthcare providers disagree, each provider can classify the disagreement into three levels:• SDM Level 1 Decision: “We disagree but it really does not matter, so do whatever you desire!”• SDM Level 2 Decision: “We disagree and I believe it matters, but I am OK if you do whatever you desire!!”• SDM Level 3 Decision: “We disagree and I must insist (diplomatically and politely) that we follow the strategy that I am proposing!!!!!!”SDM Level 1 Decisions and SDM Level 2 Decisions typically do not create stress on the team, especially when there is mutual purpose and respect among the members of the team. SDM Level 3 Decisions are the real challenge. Periodically, the healthcare team is faced with such Level 3 Decisions, and teamwork and shared decision-making may be challenged. Teamwork is a learned behaviour, and mentorship is critical to achieve a properly balanced approach. If we agree to leave our egos at the door, then, in the final analysis, the team will benefit and we will set the stage for optimal patient care. In the environment of strong disagreement, true teamwork and shared decision-making are critical to preserve the unity and strength of the multi-disciplinary team and simultaneously provide excellent healthcare.

scholarly journals Practitioners’ views on shared decision-making implementation: A qualitative study

PLoS ONE ◽  
2021 ◽  
Vol 16 (11) ◽  
pp. e0259844
Author(s):  
Anshu Ankolekar ◽  
Karina Dahl Steffensen ◽  
Karina Olling ◽  
Andre Dekker ◽  
Leonard Wee ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aids ◽  
Healthcare Providers ◽  
Structured Interview ◽  
Shared Decision ◽  
Implementation Success ◽  
Patient Decision ◽  
Interview Format ◽  
Major Shift

Introduction Shared decision-making (SDM) refers to the collaboration between patients and their healthcare providers to make clinical decisions based on evidence and patient preferences, often supported by patient decision aids (PDAs). This study explored practitioner experiences of SDM in a context where SDM has been successfully implemented. Specifically, we focused on practitioners’ perceptions of SDM as a paradigm, factors influencing implementation success, and outcomes. Methods We used a qualitative approach to examine the experiences and perceptions of 10 Danish practitioners at a cancer hospital experienced in SDM implementation. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data was analyzed through thematic analysis. Results Prior to SDM implementation, participants had a range of attitudes from skeptical to receptive. Those with more direct long-term contact with patients (such as nurses) were more positive about the need for SDM. We identified four main factors that influenced SDM implementation success: raising awareness of SDM behaviors among clinicians through concrete measurements, supporting the formation of new habits through reinforcement mechanisms, increasing the flexibility of PDA delivery, and strong leadership. According to our participants, these factors were instrumental in overcoming initial skepticism and solidifying new SDM behaviors. Improvements to the clinical process were reported. Sustaining and transferring the knowledge gained to other contexts will require adapting measurement tools. Conclusions Applying SDM in clinical practice represents a major shift in mindset for clinicians. Designing SDM initiatives with an understanding of the underlying behavioral mechanisms may increase the probability of successful and sustained implementation.

scholarly journals Adherence to oral anticancer agents: Healthcare providers’ perceptions, beliefs and shared decision making in Belgium and the Netherlands

2016 ◽  
Vol 55 (4) ◽  
pp. 437-443 ◽  
Author(s):  
Mathieu Verbrugghe ◽  
Lonneke Timmers ◽  
Christel C.L.M. Boons ◽  
Bart J.F. Van Den Bemt ◽  
Jacqueline G. Hugtenburg ◽  
...  
Keyword(s):  
Decision Making ◽  
The Netherlands ◽  
Shared Decision Making ◽  
Anticancer Agents ◽  
Healthcare Providers ◽  
Shared Decision ◽  
Oral Anticancer Agents
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