scholarly journals Understanding the low take-up of home-based dialysis through a shared decision-making lens: a qualitative study

BMJ Open ◽  
2021 ◽  
Vol 11 (11) ◽  
pp. e053937
Author(s):  
Jane Noyes ◽  
Gareth Roberts ◽  
Gail Williams ◽  
James Chess ◽  
Leah Mc Laughlin
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Shared Decision Making ◽  
Healthcare Professionals ◽  
Family Members ◽  
Shared Decision ◽  
Framework Analysis ◽  
Future Treatment ◽  
Modifiable Factors ◽  
Decision Making Processes

ObjectivesTo explore how people with chronic kidney disease who are pre-dialysis, family members and healthcare professionals together navigate common shared decision-making processes and to assess how this impacts future treatment choice.DesignCoproductive qualitative study, underpinned by the Making Good Decisions in Collaboration shared decision-model. Semistructured interviews with a purposive sample from February 2019 - January 2020. Interview data were analysed using framework analysis. Coproduction of logic models/roadmaps and recommendations.SettingFive Welsh kidney services.Participants95 participants (37 patients, 19 family members and 39 professionals); 44 people supported coproduction (18 patients, 8 family members and 18 professionals).FindingsShared decision-making was too generic and clinically focused and had little impact on people getting onto home dialysis. Preferences of where, when and how to implement shared decision-making varied widely. Apathy experienced by patients, caused by lack of symptoms, denial, social circumstances and health systems issues made future treatment discussions difficult. Families had unmet and unrecognised needs, which significantly influenced patient decisions. Protocols containing treatment hierarchies and standards were understood by professionals but not translated for patients and families. Variation in dialysis treatment was discussed to match individual lifestyles. Patients and professionals were, however, defaulting to the perceived simplest option. It was easy for patients to opt for hospital-based treatments by listing important but easily modifiable factors.ConclusionsShared decision-making processes need to be individually tailored with more attention on patients who could choose a home therapy but select a different option. There are critical points in the decision-making process where changes could benefit patients. Patients need to be better educated and their preconceived ideas and misconceptions gently challenged. Healthcare professionals need to update their knowledge in order to provide the best advice and guidance. There needs to be more awareness of the costs and benefits of the various treatment options when making decisions.

Understanding the Low Take-Up of Home-Based Dialysis Through Shared Decision-Making: A Qualitative Study

2021 ◽  
Author(s):  
David Dallimore ◽  
Gareth W. Roberts ◽  
Leah McLaughlin ◽  
Gail Williams Wales Renal ◽  
James Chess ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Prior Knowledge ◽  
Shared Decision Making ◽  
Decision Making Process ◽  
Shared Decision ◽  
Framework Analysis ◽  
Home Dialysis ◽  
Home Based ◽  
Decision Making Processes

Abstract Background Despite home dialysis having many advantages, take-up by people with established renal failure is low in many countries. Previous studies highlight complex social, psychological, economic and health-system obstacles to patients choosing home dialysis. The study explored how people who are pre-dialysis, caregivers and health professionals together navigate common shared decision-making processes, and assesses how this impacts on choice of dialysis, conservative treatment or transplant. Methods This qualitative study took place in Wales, a country within the United Kingdom with a publicly-funded healthcare system. From 5 renal centres, education literature used in patient education was collected and content analysis applied. The theoretical framework was the MAGIC shared decision-model. From February 2019 until data saturation was reached in January 2020, semi-structured interviews with a purposive sample of 51 patients, 41 caregivers and 49 renal professionals were undertaken. Interview data were analysed using framework analysis. Patient and public representatives were involved throughout. Results Thematic findings are presented as: Prior knowledge, choice talk, options talk, decision talk. Gaps were found in both knowledge and understanding at every stage of the decision-making process and amongst all involved. Patients and caregivers came with varying levels of prior knowledge and understanding, which can result in misinformation and biases that contaminate the shared decision-making process. This is not always recognised by renal professionals. Presentation of treatment options through education programmes was often found to be inadequate, biased or poorly understood. Such deficiencies create partialities towards some treatments and, in particular, mitigate against the take-up of home therapies, even when they may be the most appropriate. A logic model and a road map to further evolving clinical practice was developed. Conclusions There are critical points in the process at where change could benefit patients. Patients need to be better prepared and their preconceived ideas and misconceptions gently challenged. Healthcare professionals need to update their knowledge in order to provide the best advice and guidance. Shared decision-making processes need to be individually-tailored so that there is more attention paid to the benefits of home based options, and on people who could chose a home therapy but select a different option.

Perceptions and experiences of older patients and healthcare professionals regarding shared decision-making in pulmonary rehabilitation: A qualitative study

2021 ◽  
pp. 026921552110102
Author(s):  
Yuyu Jiang ◽  
Jianlan Guo ◽  
Pingping Sun ◽  
Zhongyi Chen ◽  
Fenglan Liu ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Shared Decision Making ◽  
Perceived Stress ◽  
Thematic Analysis ◽  
Pulmonary Rehabilitation ◽  
Older Patients ◽  
Healthcare Professionals ◽  
Knowledge Gap ◽  
Shared Decision

Objective: To understand the perceptions and experiences of older patients with chronic obstructive pulmonary disease (COPD) and healthcare professionals (HCPs) regarding shared decision-making in pulmonary rehabilitation (PR). Design: A qualitative study using single, semi-structured interviews, and thematic analysis. Setting: Face-to-face interviews were conducted in the Jiangnan University, in hospital and in patients’ homes. Participants: Twenty-two older patients with COPD and 29 HCPs. Methods: An initial codebook and semi-structured interview guide were developed based on the shared decision-making 3-circle conceptual model. Thematic analysis was used to analyze data. Results: The study identified 10 themes that describe the perceptions and experiences of patients and HCPs involved in PR decision-making: (1) patients’ confidence, (2) patients’ perceptions of the cost-benefit of decisions, (3) patients’ perceived stress about the consequences of decision-making, (4) HCPs’ perceived stress on shared decision-making, (5) cognitive biases of patients toward illness and rehabilitation, (6) shared decision-making as a knowledge gap, (7) the knowledge gap between patients and HCPs, (8) authority effect, (9) family support, (10) human resources. These themes were then divided into three groups according to their characteristics: (1) the feelings of the participants, (2) knowledge barriers, and (3) support from the social system. Conclusion: Patients and HCPs described their negative perceptions and experiences of participating in decision-making in PR. The implementation of shared decision-making in PR is currently limited; therefore, health education for patients and families should be strengthened and a training system for HCPs in shared decision-making should be established.

scholarly journals Healthcare professionals’ behaviour regarding the implementation of shared decision-making in screening programmes: A systematic review

2021 ◽  
Author(s):  
María José Hernández-Leal ◽  
María José Pérez-Lacasta ◽  
María Feijoo-Cid ◽  
Vanesa Ramos-García ◽  
Misericòrdia Carles-Lavila
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
Shared Decision Making ◽  
Healthcare Professionals ◽  
Shared Decision

scholarly journals Patient decision aid based on multi-criteria decision analysis for disease-modifying drugs for multiple sclerosis: prototype development

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
I. E. H. Kremer ◽  
P. J. Jongen ◽  
S. M. A. A. Evers ◽  
E. L. J. Hoogervorst ◽  
W. I. M. Verhagen ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Healthcare Professionals ◽  
Treatment Options ◽  
Shared Decision ◽  
Patient Decision Aid ◽  
Disease Modifying Drugs ◽  
Patient Decision ◽  
Further Development

Abstract Background Since decision making about treatment with disease-modifying drugs (DMDs) for multiple sclerosis (MS) is preference sensitive, shared decision making between patient and healthcare professional should take place. Patient decision aids could support this shared decision making process by providing information about the disease and the treatment options, to elicit the patient’s preference and to support patients and healthcare professionals in discussing these preferences and matching them with a treatment. Therefore, a prototype of a patient decision aid for MS patients in the Netherlands—based on the principles of multi-criteria decision analysis (MCDA) —was developed, following the recommendations of the International Patient Decision Aid Standards. MCDA was chosen as it might reduce cognitive burden of considering treatment options and matching patient preferences with the treatment options. Results After determining the scope to include DMDs labelled for relapsing-remitting MS and clinically isolated syndrome, users’ informational needs were assessed using focus groups (N = 19 patients) and best-worst scaling surveys with patients (N = 185), neurologists and nurses (N = 60) to determine which information about DMDs should be included in the patient decision aid. Next, an online format and computer-based delivery of the patient decision aid was chosen to enable embedding of MCDA. A literature review was conducting to collect evidence on the effectiveness and burden of use of the DMDs. A prototype was developed next, and alpha testing to evaluate its comprehensibility and usability with in total thirteen patients and four healthcare professionals identified several issues regarding content and framing, methods for weighting importance of criteria in the MCDA structure, and the presentation of the conclusions of the patient decision aid ranking the treatment options according to the patient’s preferences. Adaptations were made accordingly, but verification of the rankings provided, validation of the patient decision aid, evaluation of the feasibility of implementation and assessing its value for supporting shared decision making should be addressed in further development of the patient decision aid. Conclusion This paper aimed to provide more transparency regarding the developmental process of an MCDA-based patient decision aid for treatment decisions for MS and the challenges faced during this process. Issues identified in the prototype were resolved as much as possible, though some issues remain. Further development is needed to overcome these issues before beta pilot testing with patients and healthcare professionals at the point of clinical decision-making can take place to ultimately enable making conclusions about the value of the MCDA-based patient decision aid for MS patients, healthcare professionals and the quality of care.

Certified Patient Decision Aids: Solving Persistent Problems with Informed Consent Law

2017 ◽  
Vol 45 (1) ◽  
pp. 12-40 ◽  
Author(s):  
Thaddeus Mason Pope
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Medical Treatment ◽  
Shared Decision Making ◽  
Decision Aids ◽  
Shared Decision ◽  
Legal Doctrine ◽  
Patient Decision Aids ◽  
Patient Decision ◽  
Decision Making Processes

The legal doctrine of informed consent has overwhelmingly failed to assure that the medical treatment patients get is the treatment patients want. This Article describes and defends an ongoing shift toward shared decision making processes incorporating the use of certified patient decision aids.

scholarly journals Interventions for increasing the use of shared decision making by healthcare professionals

2018 ◽  
Author(s):  
France Légaré ◽  
Rhéda Adekpedjou ◽  
Dawn Stacey ◽  
Stéphane Turcotte ◽  
Jennifer Kryworuchko ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Healthcare Professionals ◽  
Shared Decision
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