Search

Objectives: Systematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation., Methods: Electronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conducted to identify qualitative studies. Data were extracted, thematically analysed and synthesised., Results: Searches yielded 2445 papers, of which 25 were included. Thematic analysis identified six key themes. Key barriers included emotional crises experienced in the NICU setting, lack of medical information provided to parents to inform decision-making, inadequate communication of information, poor relationships with caregivers, lack of continuity in care, and perceived power imbalances between HCPs and parents. Key facilitators included clear, honest and compassionate communication of medical information, caring and empathetic caregivers, continuity in care, and tailored approaches that reflected parent's desired level of involvement., Conclusion: The highly specialised environment, and the emotional crises experienced by parents impact significantly on their perceived capacity to engage in surrogate decision-making., Practice Implications: Complex and multi-factorial interventions that address the training needs of HCPs, and the emotional, informational and decision support needs of parents are needed. SDM skills training, improved information delivery, and integrated emotional and decisional support could help parents to become more involved in SDM for their infant., (Copyright © 2021 Elsevier B.V. All rights reserved.)

Purpose: Adolescents living with long-term conditions (LTCs) often feel as though they are left out of discussions and decisions with healthcare professionals, which can give them the impression that their views are not important. Research around decision-making during clinical encounters often fails to represent adolescents' perspectives. This study explores adolescents' perceptions and experiences, focusing on identifying the perceived barriers to, and facilitators for, their involvement in shared decision-making (SDM)., Methods: Nineteen adolescents (aged 13-19 years) with LTCs were recruited from endocrinology, rheumatology, neurology, and nephrology clinics. Participatory qualitative interviews were conducted using life grids and pie charts, and transcripts were analyzed thematically., Results: Four overarching themes and nine sub-themes were identified which describe barriers and facilitators around SDM. Adolescents need to feel, as though their involvement is supported by parents and healthcare professionals, that their contribution to the decision-making process is important and will yield a positive outcome. Adolescents often feel it is their right to be involved in decisions that affect them but also feel as though the adults' contributions to the decisions are considered more valuable. Adolescents need to feel capable of being involved, in terms of being able to understand and process information about the available options and ask appropriate questions., Conclusions: This work highlights a number of ways SDM can be facilitated between healthcare practitioners and adolescents with LTCs. Identifying the needs of adolescents with LTCs is necessary for optimizing the SDM process and to support them during healthcare consultations., (Copyright © 2019 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: Research is needed to understand how Shared Decision-Making (SDM) is enacted in routine clinical settings. We aimed to 1) describe the process of SDM between clinicians and patients; 2) examine how well the SDM process compares to a prescriptive model of SDM, and 3) propose a descriptive model based on observed SDM in routine practice., Methods: Patients with chronic kidney disease and early stage breast cancer were recruited consecutively via Cardiff and Vale University Health Board (UK) teams. Consultations were audio-recorded, transcribed and thematically analysed., Results: Seventy-six consultations were observed: 26 pre-dialysis consultations and two consultations each for 25 breast cancer patients. Key stages of the 'Three Talk Model' were observed. However, we also observed more elements and greater complexity: a distinct preparation phase; tailored and evolving integrative option conversation; patients and clinicians developing 'informed preferences'; distributed and multi-stage decisions; and a more open-ended planning discussion. Use of decision aids was limited., Conclusion: A more complex picture was observed compared with previous portrayals in current theoretical models., Practice Iimplications: The model can provide a basis for future training and initiatives to promote SDM, and tackle the gap between what is advocated in policy, but rarely achieved in practice., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Objective: To understand the preferences and experiences of adolescents (age 10-19) with long-term conditions (LTCs) towards involvement in discussions and decisions regarding management of their condition., Methods: A systematic review and narrative synthesis of mixed-methods, quantitative and qualitative and research was performed. Six databases were searched from inception to March 2017. The quality of the articles was assessed, and relevant data were extracted and coded thematically., Results: The search yielded 27 articles which met the inclusion criteria. Decision-making involvement preferences and experiences were reported from the adolescents' perspectives. Adolescents often report that they do not have any choice of treatment options. Variability in preferences and experiences were found within and between individuals. Mismatches between preferences and experiences are common, and often with negative emotional consequences., Discussion: Adolescent preferences for involvement in the decision-making process are situational and individualistic. Healthcare professionals can encourage involvement by ensuring that adolescents are informed of treatment options, and aware of the value of their contribution. Future research should explore adolescent perceived barriers and facilitators to SDM., Practical Implications: Interventions are needed to effectively train HCPs in the delivery of shared decision-making, and to support the participation of adolescents with LTCs in shared decision-making., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Objective: Patient decision support interventions are not currently subject to standardized quality control. The current study aims to assess the feasibility of applying a proposed set of minimum standards (previously developed as part of a possible certification process) to a selection of existing patient decision support interventions., Methods: A convenience sample of interventions selected from those included in the 2009 Cochrane systematic review of patient decision aids was scored by trained raters using the International Patient Decision Aids Standards (IPDAS) instrument. Scores were then evaluated against the published proposed minimum standards., Results: Twenty-five out of thirty included interventions met all qualifying criteria while only three met the proposed certification criteria. The changes required for an intervention to meet the proposed certification standards were relatively minor. There was considerable variation between raters' mean scores., Conclusions: Most interventions did not meet the certification criteria due to lack of information on modifiable items such as update policy and funding source., Practice Implications: Specifying minimum standards for patient decision support interventions is a feasible development. However, it remains unclear whether the minimum standards can be applied to interventions designed for use within clinical encounters and to those that target screening and diagnostic tests., (Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.)

Objective: To systematically review patient-reported barriers and facilitators to shared decision making (SDM) and develop a taxonomy of patient-reported barriers., Methods: Systematic review and thematic synthesis. Study findings/results for each included paper were extracted verbatim and entered into qualitative software for inductive analysis., Results: Electronic and follow-up searches yielded 2956 unique references; 289 full-text articles were retrieved, of which 45 articles from 44 unique studies met inclusion criteria. Key descriptive themes were grouped under two broad analytical themes: how the healthcare system is organized (4 descriptive themes) and what happens during the decision-making interaction (4 descriptive themes, 10 sub-themes). Predominant emergent themes related to patients' knowledge and the power imbalance in the doctor-patient relationship. Patients need knowledge and power to participate in SDM - knowledge alone is insufficient and power is more difficult to attain., Conclusion: Many barriers are potentially modifiable, and can be addressed by attitudinal changes at the levels of patient, clinician/healthcare team, and the organization. The results support the view that many patients currently can't participate in SDM, rather than they won't participate because they do not want to., Practice Implications: Future implementation efforts should address patient-reported factors together with known clinician-reported barriers and the wider organizational context., (Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.)

Objective: To describe the exploratory use of short decision support tools for patients, called Option Grids. Option Grids are summary tables, using one side of paper to enable rapid comparisons of options, using questions that patients frequently ask (FAQs) and designed for face-to-face clinical encounters. To date, most evidence about 'patient decision aids' has been based on tools with high content levels, designed for patients to use independently, either before or after visits., Methods: We studied the use of Option Grids in a quality improvement project, collecting field notes and conducting interviews with clinical teams., Results: In the 'Making Good Decisions in Collaboration' (MAGIC) program, clinicians found that using Option Grids made it easier to explain the existence of options and reported a 'handover' effect, where patient involvement in decision making was enhanced., Conclusion: Option Grids made options more visible and clinicians found it easier to undertake shared decision making when these tools were available. Used in a collaborative way, they enhance patients' confidence and voice, increasing their involvement in collaborative dialogs., Practice Implications: Further work to confirm these preliminary findings is required, to measure processes and to assess whether these tools have similar impact in other clinical settings., (Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.)

Objective: Significant advances have been made in the development of decision support interventions, also called decision aids, for patients facing difficult or uncertain decisions. However, challenges related to the definition, the theoretical underpinnings, the relative contribution of different components and how to migrate these tools to the Internet, remain unresolved. We propose a systematic process map for others to consider as they develop web-based, perhaps multimedia, decision support interventions and to examine the future challenges faced by developers., Methods: Based on our experiences of developing and evaluating web-based decision support interventions, we outline a process map to illustrate the general principles of content specification followed by creative design and tailoring to the target audience., Results: Content specification is fundamental and it should go beyond the traditional emphasis on scientific evidence in order to ensure patients' perspectives on the proposed options. The creative design phase aims to develop a medium to achieve three fundamental tasks: present information; achieve accurate affective forecasting; provide a basis for preference construction. This phase should be an open to experimentation and, where empirical work may be difficult or not yet available, guided by consultation with users, using an iterative method of trial and adaptation., Conclusion: There is little empirical research on how best to achieve these tasks. The guiding principle needs to be one of customising the delivery, based on close consultation with the target users and an iterative development process until the intervention is deemed accessible and useful., Practice Implications: The process map provides a basis for further developments and outlines areas where remaining challenges need further investigation., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)