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Contains fulltext : 154033.pdf (Publisher’s version ) (Open Access) BACKGROUND: A person-centred approach in the context of health services delivery implies a biopsychosocial model focusing on all factors that influence the person's health and functioning. Those wishing to monitor change should consider this perspective when they develop and use guidelines to stimulate active consideration of the person's needs, preferences and participation in goal setting, intervention selection and the use of appropriate outcome measures. OBJECTIVE: To develop a position paper that promotes a person-centred approach in guideline development and implementation. DESIGN, SETTING AND PARTICIPANTS: We used three narrative discussion formats to collect data for achieving consensus: a nominal group technique for the Allied Health Steering Group, an Internet discussion board and a workshop at the annual G-I-N conference. We analysed the data for relevant themes to draft recommendations. RESULTS: We built the position paper on the values of the biopsychosocial model. Four key themes for enhancing a person-centred approach in clinical guidelines emerged: (i) use a joint definition of health-related quality of life as an essential component of intervention goals, (ii) incorporate the International Classification of Functioning, Disability and Health (ICF) as a framework for considering all domains related to health, (iii) adopt a shared decision-making method, and (iv) incorporate patient-reported health outcome measures. The position statement includes 14 recommendations for guideline developers, implementers and users. CONCLUSION: This position paper describes essential elements for incorporating a person-centred approach in clinical guidelines. The consensus process provided information about barriers and facilitators that might help us develop strategies for implementing person-centred care.

Background: Hypertension is mainly managed in primary care. Shared decision making is widely recommended as an approach to treatment decision making. However, no studies have investigated; in detail, what happens during primary care consultations for hypertension.Aim: To understand patients’ and clinicians’ experience of shared decision making for hypertension in primary care, in order to propose how it might be better supported.Design: Longitudinal qualitative studySetting: Five general practices in south-west England.Method: Interviews with a purposive sample of patients with hypertension, and with the health-care practitioners they consulted, along with observations of clinical consultations, for up to 6 appointments. Interviews and consultations were audio-recorded and observational field notes taken. Data were analysed thematically.Results: Forty- six interviews and 18 consultations were observed, with 11 patients and nine health-care practitioners (five GPs, one pharmacist and three nurses). Little shared decision making was described by participants or observed. Often patients’ understanding of their hypertension was limited, and they were not aware there were treatment choices. Consultations provided few opportunities for patients and clinicians to reach a shared understanding of their treatment choices. Opportunities for patients to engage in choices were limited by structured consultations and the distribution of decisions across consultations.Conclusion: For shared decision making to be better supported, consultations need to provide opportunities for patients to learn about their condition, to understand that there are treatment choices, and to discuss these choices with clinicians.Patient or Public Contribution: A patient group contributed to the design of this study.

Background Eliciting residents’ priorities for their care is fundamental to delivering person‐centred care in residential aged care facilities (RACFs). Prioritization involves ordering different aspects of care in relation to one another by level of importance. By understanding residents’ priorities, care can be tailored to residents’ needs while considering practical limitations of RACFs. Objectives To investigate aged care residents’ prioritization of care. Design A mixed‐methods study comprising Q methodology and qualitative methods. Setting and participants Thirty‐eight residents living in one of five Australian RACFs. Method Participants completed a card–sorting activity using Q methodology in which they ordered 34 aspects of care on a pre‐defined grid by level of importance. Data were analysed using inverted factor analysis to identify factors representing shared viewpoints. Participants also completed a think‐aloud task, demographic questionnaire, post‐sorting interview and semi‐structured interview. Inductive content analysis of qualitative data was conducted to interpret shared viewpoints and to identify influences on prioritization decision making. Results Four viewpoints on care prioritization were identified through Q methodology: Maintaining a sense of spirituality and self in residential care; information sharing and family involvement; self‐reliance; and timely access to staff member support. Across the participant sample, residents prioritized being treated with respect, the management of medical conditions, and their independence. Inductive content analysis revealed four influences on prioritization decisions: level of dependency; dynamic needs; indifference; and availability of staff. Conclusions Recommendations for providing care that align with residents’ priorities include establishing open communication channels with residents, supporting residents’ independence and enforcing safer staffing ratios.

© 2020 The Authors. Health Expectations published by John Wiley & Sons Ltd Background: Brain injury rehabilitation is an expensive and long-term endeavour. Very little published information or debate has underpinned policy for service delivery in Australia. Within the context of finite health budgets and the challenges associated with providing optimal care to persons with brain injuries, members of the public were asked ‘What considerations are important to include in a model of care of brain injury rehabilitation?’. Methods: Qualitative study using the Citizen Jury method of participatory research. Twelve adult jurors from the community and seven witnesses participated including a health services funding model expert, peak body representative with lived experience of brain injury, carer of a person with a brain injury, and brain injury rehabilitation specialists. Witnesses were cross-examined by jurors over two days. Results: Key themes related to the need for a model of rehabilitation to: be consumer-focused and supporting the retention of hope; be long-term; provide equitable access to services irrespective of funding source; be inclusive of family; provide advocacy; raise public awareness; and be delivered by experts in a suitable environment. A set of eight recommendations were made. Conclusion: Instigating the recommendations made requires careful consideration of the need for new models of care with flexible services; family involvement; recruitment and retention of highly skilled staff; and providing consumer-focused services that prepare individuals and their carers for the long term. Patient and public contribution: As jury members, the public deliberated information provided by expert witnesses (including a person with a head injury) and wrote the key recommendations.

Background Discussing patient preferences for cardio‐pulmonary resuscitation (CPR) is routine in hospital admission for older people. The way the conversation is conducted plays an important role for patient comprehension and the ethics of decision making. Objective The objective was to examine how CPR is explained in geriatric rehabilitation hospital admission interviews, focussing on circumstances in which physicians explain CPR and the content of these explanations. Method We recorded forty‐three physician‐patient admission interviews taking place in a hospital in French‐speaking Switzerland, during which CPR was discussed. Data were analysed in French with thematic and conversation analysis, and the extracts used for publication were translated into English. Results Mean patient age was 83.7 years; 53.5% were admitted for rehabilitation after surgery or traumatism. CPR was explained in 53.8% of the conversations. Most explanations were brief and concerned the technical procedures, mentioning only rarely potential outcome. With one exception, medical indication and prognosis of CPR did not feature in these explanations. Explanations occurred either before the patient's answer (as part of the question about CPR preferences) or after the patient's answer, generated by patients' indecision, misunderstanding and by the need to clarify answers. Discussion and conclusions The scarcity and simplicity of CPR explanations highlight a reluctance to have in‐depth discussions and reflect the assumption that CPR does not need explaining. Providing patients with accurate information about the outcomes and risks of CPR is incremental for reaching informed decisions and patient‐centred care. Patient contribution Patients were involved in the data collection stage of the study.

Objective To participate in shared decision making (SDM), patients need to understand their options and develop trust in their own decision-making abilities. Two experiments investigated the potential of decision aids (DAs) in preparing patients for SDM by raising awareness of preference-sensitivity (Study 1) and showing possible personal motives for decision making (Study 2) in addition to providing information about the treatment options. Methods Participants (Study 1: N = 117; Study 2: N = 217) were put into two scenarios (Study 1: cruciate ligament rupture; Study 2: contraception), watched a consultation video and were randomized into one of three groups where they received additional information in the form of (a) narrative patient testimonials; (b) non-narrative decision strategies; and (c) an unrelated text (control group). Results Participants who viewed the patient testimonials or decision strategies felt better prepared for a decision (Study 1: P η P 2 = 0.43; Study 2: P η P 2 = 0.57) and evaluated the decision-making process more positively (Study 2: P η P 2 = 0.13) than participants in the control condition. Decision certainty (Study 1: P η P 2 = 0.05) and satisfaction (Study 1: P η P 2 = 0.11; Study 2: P = .003, d = 0.29) were higher across all conditions after watching the consultation video, and certainty and satisfaction were lower in the control condition (Study 2: P η P 2 = 0.05). Discussion Decision aids that explain preference-sensitivity and personal motives can be beneficial for improving people's feelings of being prepared and their perception of the decision-making process. To reach decision certainty and satisfaction, being well informed of one's options is particularly relevant. We discuss the implications of our findings for future research and the design of DAs.

Background Measurement of physicians' competence in shared decision making (SDM) remains challenging with frequent disagreement between assessment methods. Objective To conceptualize and measure physicians' SDM competence as an organized network of behavioural skills and to determine whether processing patient-reported data according to this model can be used to predict observer-rated competence. Design Secondary analysis of an observational study. Setting and participants Primary and specialty outpatient care physicians and consecutively recruited adult patients with a chronic condition who faced a treatment decision with multiple acceptable choices. Measures Network parameters constructed from patients' assessment of physicians' SDM skills as measured by the 9-item Shared Decision Making Questionnaire (SDM-Q-9) and observer-rated SDM competence of physicians measured by three widely used observer-rated instruments. Results 29 physicians (12 female, 17 male; mean age 50.3 years) recruited 310 patients (59.4% female, 40.6% male; mean age 54.0 years) facing a decision mainly regarding type 2 diabetes (36.4%), chronic back pain (32.8%) or depressive disorder (26.8%). Although most investigated skills were interrelated, elicitation of the patient's treatment preferences showed the strongest associations with the other skills. Network parameters of this skill were also decisive in predicting observer-rated competence. Correlation between predicted competence scores and observer-rated measurements ranged from 0.710 to 0.785. Conclusions Conceptualizing physicians' SDM competence as a network of interacting skills enables the measurement of observer-rated competence using patient-reported data. In addition to theoretical implications for defining and training medical competences, the findings open a new way to measure physicians' SDM competence under routine conditions.

Context The 1989 UN Convention on the Rights of the Child states that children have the right to be heard in all matters affecting them. The Convention inspired a surge in research that investigates young people's perspectives on health and wellness‐related concerns and that involves children as ‘co‐researchers'. Young people's advisory groups (YPAGs) are a widely used method to enable young people's involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups. Objective In this paper, we provide a step‐by‐step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People's Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co‐production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact. Results We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co‐production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on‐going evaluations on the impact of the group on both the young people and the research. Conclusion Adopting a critical and reflective attitude can increase researchers' capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience's needs and priorities.

Background Co-production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co-production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation. Objective To address these challenges, we designed the first large co-productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co-productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges. Design Two-year co-produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies. Setting and participants NHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co-productive partners with the research team. Results Co-productive strategies enabled a smooth passage through four different ethics processes within the 10-week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area. Discussion and conclusion Although expensive and time consuming, co-production was effective and added value to research processes and study outcomes.

Background Patient and family engagement in health care has emerged as a critical priority. Understanding engagement, from the perspective of the patient and family member, coupled with an awareness of how patient and family members are motivated to be involved, is an important component in increasing the effectiveness of patient engagement initiatives. The purpose of this research was to co‐design a patient and family engagement framework. Methods Workshops were held to provide additional context to the findings from a survey. Participants were recruited using a convenience sampling strategy. Workshop data collected were analysed using a modified constant comparative technique. The core research team participated in a workshop to review the findings from multiple inputs to inform the final framework and participated in a face validity exercise to determine that the components of the framework measured what they were intended to measure. Results The framework is organized into three phases of engagement: why I got involved; why I continue to be involved; and what I need to strengthen my involvement. The final framework describes seven motivations and 24 statements, arranged by the three phases of engagement. Conclusion The results of this research describe the motivations of patient and family members who are involved with health systems in various roles including as patient advisors. A deeper knowledge of patient and family motivations will not only create meaningful engagement opportunities but will also enable health organizations to gain from the voice and experience of these individuals, thereby enhancing the quality and sustainability of patient and family involvement.

Background Shared decision making (SDM) has been increasingly implemented to improve health‐care outcomes. Despite the mixed efficacy of SDM to provide better patient‐guided care, its use in surgery has not been studied. The aim of this study was to systematically review SDM application in surgery. Design The search strategy, developed with a medical librarian, included nine databases from inception until June 2019. After a 2‐person title and abstract screen, full‐text publications were analysed. Data collected included author, year, surgical discipline, location, study duration, type of decision aid, survey methodology and variable outcomes. Quantitative and qualitative cross‐sectional studies, as well as RCTs, were included. Results A total of 6060 studies were retrieved. A total of 148 were included in the final review. The majority of the studies were in plastic surgery, followed by general surgery and orthopaedics. The use of SDM decreased surgical intervention rate (12 of 22), decisional conflict (25 of 29), and decisional regret (5 of 5), and increased decisional satisfaction (17 of 21), knowledge (33 of 35), SDM preference (13 of 16), and physician trust (4 of 6). Time increase per patient encounter was inconclusive. Cross‐sectional studies showed that patients prefer shared treatment and surgical treatment varied less. The results of SDM per type of decision aid vary in terms of their outcome. Conclusion SDM in surgery decreases decisional conflict, anxiety and surgical intervention rates, while increasing knowledge retained decisional satisfaction, quality and physician trust. Surgical patients also appear to prefer SDM paradigms. SDM appears beneficial in surgery and therefore worth promoting and expanding in use.

Objective: To explore the role of antenatal counselling in how parents make treatment decisions following an antenatal diagnosis of Hypoplastic Left Heart Syndrome (HLHS). / Background: Antenatal counselling is a critical part of patient management following a diagnosis of fetal congenital heart disease; however, there is a very limited evidence base examining how parents actually experience antenatal counselling and make decisions in this context./ Methods: Semi‐structured interviews were conducted with women who had received an antenatal diagnosis of HLHS. Interviews were digitally recorded, anonymised and transcribed verbatim. A thematic content analysis was performed using a constant comparative approach. / Results: Eight mothers of surviving children with HLHS were interviewed. Eight key themes emerged including new perspectives on how women receive antenatal counselling and how it affects their decision making. Three themes in particular are new to the literature: (a) Mothers of children with HLHS reported feelings of intense guilt that arose in the antenatal period around potentially causing the condition in their child. (b) For this group of women, recollections of perceived pessimism during antenatal counselling had a lasting impact. (c) Despite support from partners or extended family, women nevertheless experienced a strong sense that antenatal decision making was largely a ‘maternal’ responsibility. / Conclusions: When recounting their experiences of antenatal counselling, mothers of surviving children with HLHS offer new perspectives that can guide fetal cardiologists in how best to support their individual patients. Further research is needed to comprehensively understand the experience of prospective parents counselled for severe forms of fetal congenital heart disease.

Euthanasia or assisted dying (EAD) remains a highly contentious issue internationally. Although polls report that a majority New Zealanders support EAD, there are concerns about the framing of the polling questions, and that those responding to the questions do not know enough about the situations described, the options available and the potential implications of EAD policy. One way to address these concerns is through a citizens' jury, which is a method of learning how a group of people view an issue following informed deliberation. This citizens' jury was conducted to learn whether a group of 15 New Zealanders thought the law should be changed to allow some form of EAD and the reasons for their view, having been informed about the issue, heard arguments for and against, and having deliberated together. The jury met for two and a half days. They did not reach a consensus, but become polarized in their positions, with several changing their positions to either strong opposition or strong support. The reasons why people support or oppose EAD were not reducible to particular principles or arguments, but reflected an integrated assessment of a range of considerations, informed by personal priorities and experiences. These results suggest that views on EAD may change in response to informed deliberation that the EAD debate involves a range of value judgments and is not likely to be resolved through deliberation alone. These results may inform international debate on EAD policy.

Background Existing measures to assess shared decision making (SDM) have often been developed based on an ill‐defined underlying construct, and many assess physician behaviours only or focus on a single patient‐physician encounter. Objective To (a) develop a patient and a physician questionnaire to measure SDM in oncology and (b) determine their content validity and comprehensibility. Methods A systematic review of SDM models and an oncology‐specific SDM model informed the domains of the SDM construct. We formulated items for each SDM domain. Cancer patients and physicians rated content validity in an online questionnaire. We assumed a formative measurement model and performed online field‐testing in cancer patients to inform further item reduction. We tested item comprehension in cognitive interviews with cancer patients and physicians. Results We identified 17 domains and formulated 132 items. Twelve cancer patients rated content validity at item level, and 11 physicians rated content validity at domain level. We field‐tested the items among 131 cancer patients and conducted cognitive interviews with eight patients and five physicians. These phases resulted in the 15‐item iSHAREpatient and 15‐item iSHAREphysician questionnaires, covering 13 domains. Conclusions We thoroughly developed the iSHARE questionnaires. They both assess patient and physician behaviours and cover the entire SDM process rather than a single consultation.

Background Patient-centred care (PCC) improves health-care experiences and outcomes. Women with ductal carcinoma in situ (DCIS) and clinicians have reported communication difficulties. Little prior research has studied how to improve communication and PCC for DCIS. Objective This study explored how to achieve PCC for DCIS. Design Canadian women treated for DCIS from five provinces participated in semi-structured focus groups based on a 6-domain cancer-specific PCC framework to discuss communication about DCIS. Data were analysed using constant comparative technique. Setting and participants Thirty-five women aged 30 to 86 participated in five focus groups at five hospitals. Results Women said their clinicians used multiple approaches for fostering a healing relationship; however, most described an absence of desired information or behaviour to exchange information, respond to emotions, manage uncertainty, make decisions and enable self-management. Most women were confused by terminology, offered little information about the risks of progression/recurrence, uninformed about treatment benefits and risks, frustrated with lack of engagement in decision making, given little information about follow-up plans or self-care advice, and received no acknowledgement or offer of emotional support. Discussion and conclusions By comparing the accounts of women with DCIS to a PCC framework, we identified limitations and inconsistencies in women's lived experience of communication about DCIS, and approaches by which clinicians can more consistently achieve PCC for DCIS. Future research should develop and evaluate informational tools to support PCC for DCIS.

Context Despite a growing interest in service‐user involvement in mental health services, the interaction between health institutions and local groups is only beginning to receive attention, particularly in global south settings. Objective Looking at a participatory initiative in Chile, this study explores how, under unfavourable administrative conditions, health organizations approach and work with communities. Methods We interviewed policy‐makers (5), local professionals (10), service users and community representatives (6) linked to a concrete participatory initiative. Participant observation in relevant meetings helped to enrich the interpretations. Thematic analysis was applied to interview transcripts and field notes. Findings The findings present a sequence of actions starting with the creation of a network of community‐based groups. A set of problems ensued, related to the group's diversity, internal representation, decision‐making and funding processes. In response, processionals implemented simultaneously bureaucratic and democratic adjustments, developing a vision of community that ignored the particularities—including the motivations—of local groups. Discussion and conclusion Based on these findings, we argue that participatory initiatives should be studied as on‐going achievements shaped by broad policy orientations and local configurations of interest. In the process, they produce ad hoc forms of knowledge and visions of community that provide orientation to the agents involved.

Background Decisional regret during or after medical treatments is linked to significant distress. Regret affects not only patients but also caregivers having an active or passive role during decision making. The Decision Regret Scale (DRS) is a self-report measure for regret in patients after treatment decisions. However, practical and psychometrically robust instruments assessing regret in caregivers are lacking. Objective To develop and validate a caregiver version of the DRS (Decision Regret Scale for Caregivers [DRS-C]). Design Psychometric validation based on a web survey. Setting and participants 361 caregivers of deceased German people/patients with cancer. Main variables studied Besides structural validity and test-retest reliability, we evaluated measurement invariance accounting for gender, age and closeness of relationship, and tested hypotheses on convergent/discriminant validity. Results Forty-five per cent of all caregivers demonstrated decision regret. Confirmatory factor analyses strongly supported the unidimensional structure of the DRS-C and pointed to strict invariance. The DRS-C demonstrated very good internal consistency (α = 0.83, 95% CI [0.81, 0.86]) and test-retest reliability (ICC [A,1] = 0.73, 95% CI [0.59, 0.83]) along with sound convergent/discriminant validity. Concerning responsiveness, DRS-C scores remained stable over a 12-week period in 83.3% of all caregivers. Receiver operating characteristic analysis yielded a cut point of 43 for the identification of significant decision regret (AUC = 0.62, 95% CI [0.56, 0.68]). Discussion and conclusions The lack of a gold standard instrument prevented us from examining the criterion validity and determining a minimally important difference. Nevertheless, the DRS-C provides valid and reliable information regarding caregiver regret following medical decisions. Above all, it captures a crucial aspect of the treatment experience in caregivers.

© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd Background: Little is known about women's decision-making processes regarding using complementary medicine products (CMPs) during pregnancy or lactation. Objectives: To explore the decision-making processes of women choosing to use CMPs in pregnancy and lactation; and to investigate how women's health literacy influences their decisions. Design, setting and participants: In-depth interviews and focus group discussions were held with twenty-five pregnant and/or breastfeeding women. Data were analysed using thematic analysis. Results: Key to women's decision making was the desire to establish a CMPs safety and to receive information from a trustworthy source, preferably their most trusted health-care practitioner. Women wanted positive therapeutic relationships with health-care practitioners and to be highly involved in the decisions they made for the health of themselves and their children. Two overarching components of the decision-making process were identified: (a) women's information needs and (b) a preference for CMP use. Women collated and assessed information from other health-care practitioners, other mothers and published research during their decision-making processes. They showed a strong preference for CMP use to support their pregnancy and breastfeeding health, and that of their unborn and breastfeeding babies. Discussion and Conclusions: Complex decision-making processes to use CMPs in pregnancy and lactation were identified. The participants showed high levels of communicative and critical health literacy skills in their decision-making processes. These skills supported women's complex decision-making processes.

Background Although new screening programmes with low-dose computed tomography (LDCT) for lung cancer have been implemented throughout the United States, screening uptake remains low and screening-eligible persons' decisions to screen or not remain poorly understood. Objective To describe how current and former long-term smokers explain their decisions regarding participation in lung cancer screening. Design Phone interviews using a semi-structured interview guide were conducted to ask screening-eligible persons to describe their decisions regarding screening with LDCT. The interviews were transcribed and analysed with conventional content analytic techniques. Setting and participants A subsample of 40 participants (20 who had screened and 20 who had not) were drawn from the sample of a survey study whose participants were recruited by Facebook targeted advertisements. Results The sample was divided into the following five groups based on their decisions regarding lung cancer screening participation: Group 1: no intention to be screened, Group 2: no deliberate consideration but somewhat open to being screened, Group 3: deliberate consideration but no definitive decision to be screened, Group 4: intention to be screened and Group 5: had been screened. Reasons for screening participation decisions are described for each group. Across groups, data revealed that screening-eligible persons have a number of misconceptions regarding LDCT, including that a scan is needed only if one is symptomatic or has not had a chest x-ray. A physician recommendation was a key influence on decisions to screen. Discussion and conclusions Education initiatives aimed at providers and long-term smokers regarding LDCT is needed. Quality patient/provider communication is most likely to improve screening rates.

Background Alzheimer’s disease (AD) is recognised as one of the greatest global public health challenges. There is increasing consensus that optimal disease modification using pharmaceuticals may best be achieved earlier in the disease continuum before symptoms occur. However, more needs to be understood about what outcomes are meaningful to potential participants in clinical trials within this preventative paradigm and how people make trade-offs between risks and benefits. The Electronic Person Specific Outcome Measure (ePSOM) programme is developing an app to capture person specific outcomes and preferences in clinical trials.Objective As one phase in the ePSOM programme, this study explored what matters when developing new treatments to prevent AD and how trade-offs are made between risks and benefits, from three perspectives.Design Focus groups were conducted with people living with memory problems (n=21) and healthy volunteers (n=10), and telephone interviews with health and social care professionals (n=10). Differences and overlap between the three groups were explored.Results Outcomes that matter lie in five key domains in relation to what matters in everyday life: Everyday Functioning; Relationships and Social Connections; Enjoying Life; Sense of Identity; Symptoms. Insights were gained into the significance of reducing the risk of developing dementia with drugs and the processes of weighing up risks versus benefits.Discussion and conclusions The key domains identified are being used to inform the next stage of the ePSOM programme which is to develop a survey to be distributed nationally in the UK to explore these issues further.

Background: In the United States, lung cancer screening aims to detect cancer early in nonsymptomatic current and former smokers. A lung screening pilot service in an area of high lung cancer incidence in the United Kingdom has been designed based on United States trial evidence. However, our understanding of acceptability and reasons for lung screening uptake or decline in a United Kingdom nontrial context are currently limited. Objective: To explore with ever smokers the acceptability of targeted lung screening and uptake decision‐making intentions. Design: Qualitative study using semistructured focus groups and inductive thematic analysis to explore acceptability and uptake decision‐making intentions with people of similar characteristics to lung screening eligible individuals. Setting and participants: Thirty‐three participants (22 ex‐smokers; 11 smokers) men and women, smokers and ex‐smokers, aged 50‐80 were recruited purposively from community and health settings in Manchester, England. Results: Lung screening was widely acceptable to participants. It was seen as offering reassurance about lung health or opportunity for early detection and treatment. Participant's desire to know about their lung health via screening was impacted by perceived benefits; emotions such as worry about a diagnosis and screening tests; practicalities such as accessibility; and smoking‐related issues including perceptions of individual risk and smoking stigma. Discussion: Decision making was multifaceted with indications that current smokers faced higher participation barriers than ex‐smokers. Reducing participation barriers through careful service design and provision of decision support information will be important in lung screening programmes to support informed consent and equitable uptake.

The National Institute for Health and Care Excellence (NICE) provides guidance and recommendations on the use of new and existing medicines and treatments within the NHS, basing its decisions on a review of clinical and economic evidence principally, at least for STAs, provided by the drug manufacturer. The advice provided by NICE is aimed at overcoming the previously ad hoc, discretionary decisions in order to standardise access to healthcare technologies across England based on evidence. A Single Technological Appraisal (STA) is one element of NICE’s decision-making processes in which evidence about a selected technology (often medicines) is evaluated in 3 distinct phases (scoping, assessment and appraisal). In the last phase of this process an independent Appraisal Committee evaluates evidence in a meeting, partly held in public with the latter half taking place in a ‘closed’ session. During the meeting, the Appraisal Committee considers evidence based on clinical and cost-effectiveness, as well as from statements expressed by patients, commissioning experts and clinical specialists. The Institute encourages experts attending the meeting to provide both written and oral commentary about their personal view in the current management of the condition and the expected role and use of the technology – in particular how it might provide benefit to patients. Yet, NICE and its committees find themselves in a potentially incongruous position: how to take on board the experiential evidence from individual experts along with the evidence on cost-effectiveness when reaching a decision, about whether or not to recommend a treatment on cost-effectiveness grounds. This paper considers how NICE committees incorporate the views of patient perspectives in making rationing decisions about STAs. The findings from the study will discuss where points of tension / conflict arise during meetings and how Committee members navigate experiential accounts with scientific data, which types of patient perspectives are regarded favourably and which perspectives are treated with greater caution (tension between representing patients views vs tokenism), and will highlight how Committee members in fact reflect upon their own personal experience and background in the appraisal process, and thereby are at odds with retaining an element of neutrality in decision-making, as they contend with combining their own subjective views alongside considerations of rationing in the STA process. The analysis is drawn from an ESRC funded study which used an ethnographic approach to understand the decision making process within STAs involving three contrasting pharmaceutical products. Data collection methods included analysis of documentary evidence released by NICE, non-participant unstructured observations of nine STA meetings, and qualitative interviews with key informants (n=41) involved in each of the three case studies.

Objective This study employs the concept of relational autonomy to understand how relational encounters with family members (FMs) and care providers may shape decisions around ovarian cancer patients’ clinical trial (CT) participation. The study also offers unique insights into how FMs view patients’ decision making. Methods In‐depth interviews were conducted with 33 patients with ovarian cancer who had been offered a CT and 39 FMs. Data were inductively analysed using a thematic approach and deductively informed by constructs derived from the theory of relational autonomy (RA). Results Patients’ relationships, experiences and social status were significant resources that shaped their decisions. Patients did not give equal weight to all relationships and created boundaries around whom to include in decision making. Doctors’ recommendations and perceived enthusiasm were described as influential in CT decisions. Both patients with ovarian cancer and their FMs maintained that patients have the “final say,” indicating an individualistic autonomy. However, maintaining the “final say” in the decision‐making process is constitutive of patients’ relationships, emphasizing a relational approach to autonomy. FMs support patients’ autonomy and they do so particularly when they believe the patient is capable of making the right choices. Conclusions Although ethical principles underlying informed consent for CT participation emphasize individual autonomy, greater attention to relational autonomy is warranted for a more comprehensive understanding of CT decision making.

Context Approaches to priority‐setting for scarce resources have shifted to public deliberation as trade‐offs become more difficult. We report results of a qualitative analysis of public deliberation in Switzerland, a country with high health‐care costs, an individual health insurance mandate and a strong tradition of direct democracy with frequent votes related to health care. Methods We adapted the Choosing Healthplans All Together (CHAT) tool, an exercise developed to transform complex health‐care allocation decisions into easily understandable choices, for use in Switzerland. We conducted focus groups in twelve Swiss cities, recruiting from a range of socio‐economic backgrounds in the three language regions. Findings Participants developed strategic arguments based on the importance of basic coverage for all, and of cost‐benefit evaluation. They also expressed arguments relying on a principle of solidarity, in particular the importance of protection for vulnerable groups, and on the importance of medical care. They struggled with the place of personal responsibility in coverage decisions. In commenting on the exercise, participants found the degree of consensus despite differing opinions surprising and valuable. Conclusion The Swiss population is particularly attentive to the costs of health care and means of reducing these costs. Swiss citizens are capable of making trade‐offs and setting priorities for complex health issues.

Background The choice between disease-modifying drugs (DMDs) for the treatment of multiple sclerosis (MS) becomes more often a shared decision between the patient and the neurologist and MS nurse. This study aimed to assess which DMD attributes are most important for the healthcare professionals in selecting a DMD for a patient. Subsequently, within this perspective, the neurologists' and nurses' perspectives were compared. Lastly, the healthcare professionals' perspective was compared with the patients' perspective to detect any differences that may need attention in the communication about DMDs.DesignA best-worst scaling (BWS) was conducted among 27 neurologists and 33 MS nurses treating patients with MS to determine the importance of 27 DMD attributes. These attributes were identified through three focus groups with MS patients in a previous study (N=19). Relative importance scores (RISs) were estimated for each attribute. Multivariable linear regression analyses were used to compare the different perspectives.ResultsAccording to the neurologists and nurses, safety of the DMD was the most important DMD attribute in the treatment decision, closely followed by effect on disability progression, quality of life and relapse rate. Patients with MS agreed with the importance of the last three attributes, but valued safety significantly lower (b=-2.59, PConclusionsThis study suggests that, overall, neurologists and nurses regard the same DMD attributes as important as MS patients with the notable exception of safety. This study provides valuable information for the development of interventions to support shared decision making and highlights which attributes of DMDs may need additional attention.

Contains fulltext : 191361.pdf (Publisher’s version ) (Open Access) BACKGROUND: Decision aids can be used to support shared decision making (SDM). A patient-oriented treatment decision aid (DA) was developed for type 2 diabetes but its use by general practice staff appeared to be limited. OBJECTIVES: To explore views of practice staff towards SDM and the DA. DESIGN: A mixed-methods study within the Dutch PORTDA-diab trial. SETTING AND PARTICIPANTS: Included were 17 practices with staff members who were responsible for routine diabetes care and had worked with the DA, and 209 of their patients. METHODS: Interviews were conducted focusing on applicability, usefulness and feasibility of the DA. Interviews were tape-recorded, transcribed verbatim and subjected to content analysis for identifying and classifying views. Patient-reported data about the use of the DA were collected. Associations between specific views and use of the DA were tested using Pearson point-biserial correlation. RESULTS: The majority of practice staff expressed positive views towards SDM, which was associated with making more use of the DA. Most of the staff expressed that the DA stimulated a two-way conversation. By using the DA, several became aware of their paternalistic approach. Some staff experienced a conflict with the content of the DA, which was associated with making less use of the DA. CONCLUSIONS: The DA was considered useful by practice staff to support SDM. A positive view towards SDM was a facilitator, whereas experiencing a conflict with the content of the DA was a barrier for making use of the DA.

Background: Addressing the prevalence of severe obesity and its concomitant morbidities is widely acknowledged as one of the most pressing global health priorities. Nevertheless, a paucity of effective interventions and universal pressure on health-care budgets means that access to obesity treatments is often limited. Although health-care rationing can be conceived as a socially constructed process, little is known about how decisions emerge within the context of face-to-face doctor–patient interactions. Methods: In this study, we used in-depth interviews and clinic observations to investigate clinicians’ (n = 11) and patients’ (n = 22) experiences of the rationing of obesity surgery and to examine how broader cultural assumptions around personal responsibility for health emerged in the context of clinical interactions. Results: Patients and clinicians worked within similar frameworks when it came to self-responsibility for health and the appropriateness of providing publicly-funded weight loss surgery. Issues around personal accountability dominated consultations, and patients were expected to provide narratives of the development of their obesity and to account for the failure of previous interventions. Clinicians faced the added pressure of having to prioritise a limited number of patients for surgery, which was predominantly managed through mandating pre-referral weight loss targets. Discussion: Although clinicians sought to maintain an empathic attitude towards individual patients, in practice they were conflicted by their responsibility to ration health-care resources and tended to rely on entrenched models of behaviour change to allocate treatment. As a result, the content of consultations was mostly focused on issues of personal responsibility, reflecting wider stigmatized attitudes towards extreme obesity.

BACKGROUND: The process of informed decision making (IDM) requires an adequate level of health literacy. To ensure that all individuals have equal opportunity to make an informed decision in colorectal cancer (CRC) screening, it is essential to gain more insight into which health literacy skills are needed for IDM. Our aims were (i) to explore how individuals make a decision about CRC screening and (ii) to explore which skills are needed for IDM in CRC screening and (iii) to integrate these findings within a conceptual framework.METHODS: We conducted 3 focus groups with individuals eligible for CRC screening (n = 22) and 2 focus groups with experts in the field of health literacy, oncology and decision making, including scientific researchers and health-care professionals (n = 17). We used framework analysis to analyse our data.RESULTS: We identified and specified ten health literacy skills, which varied from the ability to read and understand CRC screening information to the ability to weigh up pros and cons of screening for personal relevance. The skills were linked to 8 decision-making stages in CRC screening within a conceptual framework. We found differences in perceptions between screening invitees and experts, especially in the perceived importance of CRC screening information for IDM.CONCLUSIONS: This study provides insight into the decision-making stages and health literacy skills that are essential for IDM in CRC screening. The proposed conceptual framework can be used to inform the development of context-based measurement of health literacy and interventions to support IDM in cancer screening.

Background Patients and clinicians do not often agree on whether a decision has been made about cancer care. This could be explained by factors related to communication quality and/or the type of decision being made. Methods We used a self-developed coding scheme to code a random sample of 128 encounters in which patients and clinicians either agreed (n=64) or disagreed (n=64) that a cancer care decision was made and tested for associations between concordance and key communication behaviours. We also identified and characterized cancer care decisions by topic and level of patient involvement and looked for trends. Results We identified 378 cancer care decisions across 128 encounters. Explicit decisions were most commonly made about topics wherein decision control could be easily delegated to a clear and present expert (eg either the patient or the clinician). Related to this, level of patient involvement varied significantly by decision topic. Explicit decisions were rarely made in an observable way about social, non-clinical or self-management related topics, although patients and clinicians both reported having made a cancer care decision in encounters where no decisions were observed. We found no association between communication behaviours and concordance in our sample. Conclusions What counts as a “decision” in cancer care may be constructed within disparate social roles that leave many agendas unaddressed and decisions unmade. Changing the content of conversations to encourage explicit decisions about self-management and life context-related topics may have greater value in enabling shared understanding than promoting communication behaviours among already high-performing communicators.

Background Engagement of the public in defining and shaping the organization and delivery of health care is increasingly viewed as integral to improving quality and promoting transparent decision making. Meaningful engagement of the public in health-care reform is predicated on shifting entrenched power imbalances between health-care systems and those it claims to serve. Objectives To describe the expressions, forms and spaces of power from the perspectives of persons who participated as Patient/Family Advisors (PFAs) in Rapid Process Improvement Workshops (RPIWs) within Saskatchewan, Canada. Methods Using a qualitative, interpretive approach, in-depth interviews were conducted with a purposive sample of 18 PFAs who had participated in at least one RPIW over the past year. Deductive thematic analysis was informed by Gaventa's model of power. Results Motivations for serving as a PFA included a sense of obligation to contribute to the improvement of a public system, recognition of their rights as citizens within a publicly funded system and an opportunity to openly express their concerns where previous encounters had been very negative. The invited spaces of the RPIWs were created by policymakers to accord visible power to PFAs. Participation resulted in PFAs gaining new insights into the structure and operations of the system, affirmation of their right to advocate and recognition of the potential to claim spaces of power as consumers. Advisement on specific health-care initiatives using the vehicle of PFAs shaped and promoted new forms and spaces of power, representing one step in a very long road to full engagement of consumers in health care.

Author(s): Holmes-Rovner, Margaret; Srikanth, Akshay; Henry, Stephen G; Langford, Aisha; Rovner, David R; Fagerlin, Angela | Abstract: BackgroundDecision Aids (DAs) effectively translate medical evidence for patients but are not routinely used in clinical practice. Little is known about how DAs are used during patient-clinician encounters.ObjectiveTo characterize the content and communicative function of high-quality DAs during diagnostic clinic visits for prostate cancer.Participants252 men newly diagnosed with localized prostate cancer who had received a DA, 45 treating physicians at 4 US Veterans Administration urology clinics.MethodsQualitative analysis of transcribed audio recordings was used to inductively develop categories capturing content and function of all direct references to DAs (booklet talk). The presence or absence of any booklet talk per transcript was also calculated.ResultsBooklet talk occurred in 55% of transcripts. Content focused on surgical procedures (36%); treatment choice (22%); and clarifying risk classification (17%). The most common function of booklet talk was patient corroboration of physicians' explanations (42%), followed by either physician or patient acknowledgement that the patient had the booklet. Codes reflected the absence of DA use for shared decision-making. In regression analysis, predictors of booklet talk were fewer years of patient education (Pn=n.027) and more time in the encounter (Pn=n.027). Patient race, DA type, time reading the DA, physician informing quality and physician age did not predict booklet talk.ConclusionsResults show that good decision aids, systematically provided to patients, appeared to function not to open up deliberations about how to balance benefits and harms of competing treatments, but rather to allow patients to ask narrow technical questions about recommended treatments.

Background: Current Australian mental health policy recommends that carers should be involved in the provision of mental health services. Carers often provide intensive support to mental health consumers and gain detailed insight into their lives. As such, carers could make valuable contributions to well-informed decisions about mental health consumers' use of antipsychotic medication. Objectives: The aim of this study was to explore carers' participation in antipsychotic medication decision making. Methods: Snowball sampling was used to enrol 29 carers in this study. Of these carers, 19 participated in semi-structured interviews, and ten participated in a focus group. Data were analysed thematically. Results: Four main themes emerged from the analysis. The findings highlighted that carers typically received little or no information about antipsychotic medication. Carers commonly addressed the shortfall in information by obtaining additional information through online sources or distributing among carer networks material that they had developed themselves. Almost all carers emphasized that they should be involved in decisions about antipsychotic medication, but noted that they were typically excluded. The lack of involvement in medication decisions was a source of frustration, as carers could contribute saliently through sharing detailed knowledge about mental health consumers' lives, address communication gaps that resulted from disjointed care and improve communication between health professionals and mental health consumers. Conclusion: Health professionals could consider improving the extent to which they collaborate with carers in medication decisions.

Background\ud A diagnosis of serious mental illness can impact on the whole family. Families informally provide significant amounts of care but are disproportionately at risk of carer burden when compared to those supporting people with other long-term conditions. Shared decision making (SDM) is an ethical model of health communication associated with positive health outcomes, however there has been little research to evaluate how routinely family are invited to participate in SDM, or what this looks like in practice. \ud Objective\ud This UK study aimed to better understand how the family caregivers of those diagnosed with SMI are currently involved in decision making, particularly decisions about treatment options including prescribed medication. Objectives were to:-\ud • Explore the extent to which family members wish to be involved in decisions about prescribed medication\ud • Determine how and when professionals engage family in these decisions \ud • Identify barriers and facilitators associated with the engagement of family in decisions about treatment. \ud Participants\ud Open-ended questions were sent to professionals and family members to elicit written responses. Qualitative responses were analysed thematically. \ud Results\ud Themes included the definition of involvement and ‘rules of engagement’. Staff members are gatekeepers for family involvement and the process is not democratic. Family and staff ascribe practical, rather than recovery-oriented roles to family, with preoccupation around notions of adherence. \ud Conclusions\ud Staff members need support, training and education to apply SDM. Time to exchange information is vital but practically difficult. Negotiated teams, comprising of staff, service users, family, peers as applicable, with ascribed roles and responsibilities could support SDM.

© 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd Background: Enhancing health literacy can play a major role in improving healthcare and health across the globe. To build higher-order (communicative/critical) health literacy skills among socially disadvantaged Australians, we developed a novel shared decision making (SDM) training programme for adults with lower literacy. The programme was delivered by trained educators within an adult basic education health literacy course. Objective: To explore the experience of teaching SDM within a health literacy programme and investigate whether communicative/critical health literacy content meets learner needs and teaching and institutional objectives. Design and participants: Qualitative interview study with 11 educators who delivered the SDM programme. Transcripts were analysed using the Framework approach; a matrix-based method of thematic analysis. Results: Teachers noted congruence in SDM content and the institutional commitment to learner empowerment in adult education. The SDM programme was seen to offer learners an alternative to their usual passive approach to healthcare decision making by raising awareness of the right to ask questions and consider alternative test/treatment options. Teachers valued a structured approach to training building on foundational skills, with language reinforcement and take-home resources, but many noted the need for additional time to develop learner understanding and cover all aspects of SDM. Challenges for adult learners included SDM terminology, computational numerical risk tasks and understanding probability concepts. Discussion and conclusions: SDM programmes can be designed in a way that both supports teachers to deliver novel health literacy content and empowers learners. Collaboration between adult education and healthcare sectors can build health literacy capacity of those most in need.

Background Patient-clinician communication is thought to be central to care outcomes, but when and how communication affects patient outcomes is not well understood. Objective We propose a conceptual model and classification framework upon which the empirical evidence base for the impact of patient-clinician communication can be summarized and further built. Design We use the proposed model and framework to summarize findings from two recent systematic reviews, one evaluating the use of shared decision making (SDM) on cancer care outcomes and the other evaluating the role of physician recommendation in cancer screening use. Key results Using this approach, we identified clusters of studies with positive findings, including those relying on the measurement of SDM from the patients’ perspective and affective-cognitive outcomes, particularly in the context of surgical treatment decision making. We also identify important gaps in the literature, including the role of SDM in post-surgical treatment and end-of-life care decisions, and those specifying particular physician communication strategies when recommending cancer screening. Conclusions Transparent linkages between key conceptual domains and the influence of methodological approaches on observed patient outcomes are needed to advance our understanding of how and when patient-clinician communication influences patient outcomes. The proposed conceptual model and classification framework can be used to facilitate the translation of empirical evidence into practice and to identify critical gaps in knowledge regarding how and when patient-clinician communication impacts care outcomes in the context of cancer and health care more broadly.

Background People who have cancer increasingly seek second opinions. Yet, we know little about what motivates patients to seek them and how beneficial they are. Uncertainty—experienced by patients or communicated by physician and patient—may be crucial throughout the second opinion process. Objective This study sought to investigate (1) how uncertainty influences men with prostate cancer to seek second opinions and (2) how second opinions may affect these patients’ sense of uncertainty and subsequent experiences with their care. Methods A qualitative study using semi-structured interviews was performed. Men with localized or advanced prostate cancer (n=23) were interviewed by telephone about their motivations and experiences with seeking second opinions and the uncertainties they experienced. Analysis was performed using the constant comparative method. Results Patients sought second opinions because they were uncertain about receiving too little or biased information, experienced insufficient support in coming to a treatment decision, or because physicians expressed different levels of uncertainty than they did (“unshared uncertainty”). Uncertainty was reduced by the second opinion process for most patients, whereas for others, it increased or was sustained. This evolution depended on the way uncertainty was addressed during the second opinion consultation. Conclusions Second opinions may be a useful tool for some but not all patients. They should be used judiciously and not be viewed as a solution for current limitations to health-care organization. An important yet challenging task for physicians is to focus less on information per se and more on how to assist patients manage irreducible uncertainty.

Context Engaging patients in shared decision making involves patient knowledge of treatment options and physician elicitation of patient preferences. Objective Our aim was to explore patient and physician perceptions of shared decision making in clinical encounters for cancer care. Design Patients and physicians were asked open-ended questions regarding their perceptions of shared decision making throughout their cancer care. Transcripts of interviews were coded and analysed for shared decision-making themes. Setting and participants At an academic medical centre, 20 cancer patients with a range of cancer diagnoses, stages of cancer and time from diagnosis, and eight physicians involved in cancer care were individually interviewed. Discussion and conclusions Most physicians reported providing patients with written information. However, most patients reported that written information was too detailed and felt that the physicians did not assess the level of information they wished to receive. Most patients wanted to play an active role in the treatment decision, but also wanted the physician's recommendation, such as what their physician would choose for him/herself or a family member in a similar situation. While physicians stated that they incorporated patient autonomy in decision making, most provided data without making treatment recommendations in the format preferred by most patients. We identified several communication gaps in cancer care. While patients want to be involved in the decision-making process, they also want physicians to provide evidence-based recommendations in the context of their individual preferences. However, physicians often are reluctant to provide a recommendation that will bias the patient.

Background Shared decision making is an important component of patient-centred care and decision aids are tools designed to support patients' decision making and help patients with depression to make informed choices. Objective The study aim was to assess the effectiveness of a web-based decision aid for patients with unipolar depression. Design Randomized controlled trial. Setting and participants Adults diagnosed with a major depressive disorder and recruited in primary care centres were included and randomized to the decision aid (n=68) or usual care (n=79). Intervention Patients in the decision aid group reviewed the decision aid accompanied by a researcher. Outcome measures Knowledge about treatment options, decisional conflict, treatment intention and preference for participation in decision making. We also developed a pilot measure of concordance between patients' goals and concerns about treatment options and their treatment intention. Results Intervention significantly improved knowledge (P