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Background: People with motor neuron disease (pwMND) are routinely offered gastrostomy feeding tube placement and (non‐invasive and invasive) ventilation to manage the functional decline associated with the disease. This study aimed to synthesise the findings from the qualitative literature to understand how individual, clinical team and organisational factors influence pwMND decisions about these interventions. Methods: The study design was guided by the enhancing transparency in reporting the synthesis of qualitative research (ENTREC) statement. The search of five bibliography databases and an extensive supplementary search strategy identified 27 papers that included qualitative accounts of pwMND, caregivers and healthcare professionals' (HCPs) experiences of making decisions about gastrostomy and ventilation. The findings from each study were included in a thematic synthesis. Findings: Making decisions about interventions is an emotional rather than simply a functional issue for pwMND. The interventions can signal an end to normality, and increasing dependence, where pwMND consider the balance between quality of life and extending survival. Interactions with multiple HCPs and caregivers can influence the process of decision‐making and the decisions made. These interactions contribute to the autonomy pwMND are able to exert during decision‐making. HCPs can both promote and threaten pwMND perceived agency over decisions through how they approach discussions about these interventions. Though there is uncertainty over the timing of interventions, pwMND who agree to interventions report reaching a tipping point where they accept the need for change. Conclusion: Discussion of gastrostomy and ventilation options generate an emotional response in pwMND. Decisions are the consequence of interactions with multiple external agents, including HCPs treading a complex ethical path when trying to improve health outcomes while respecting pwMND right to autonomy. Future decision support interventions that address the emotional response and seek to support autonomy have the potential to enable pwMND to make informed and timely decisions about gastrostomy placement and ventilation. Patient or Public Contribution: The lead author collaborated with several patient and participant involvement (PPI) groups with regards to the conceptualisation and design of this project. Decisions that have been influenced by discussions with multiple PPI panels include widening the scope of decisions about ventilation in addition to gastrostomy placement and the perceptions of all stakeholders involved (i.e., pwMND, caregivers and HCPs). [ABSTRACT FROM AUTHOR]

Background: As part of a multifaceted approach to patient and public involvement and engagement (PPIE), alongside traditional methods, a closed Facebook group was established to facilitate PPIE feedback on various aspects of a project that used video‐recording to examine risk communication in NHS Health Checks between June 2017 and July 2019. Objective: To explore the process and impact of conducting PPIE through a closed Facebook group and to identify the associated benefits and challenges. Methods: Supported by reflections and information from project meetings used to document how this engagement informed the project, we describe the creation and maintenance of the Facebook Group and how feedback from the group members was obtained. Facebook data were used to investigate levels and types of engagement in the closed Facebook group. We reflect on the challenges of using this method of engaging the public in health research. Results: A total of 289 people joined the 'Risk Communication of Cardiovascular disease in NHS Health Checks' PPIE closed Facebook group. They provided feedback, which was used to inform aspects of the study, including participant‐facing documents, recruitment, camera position and how the methodology being used (video‐recorded Health Checks and follow‐up interviews) would be received by the public. Discussion: Using a closed Facebook group to facilitate PPIE offered a flexible approach for both researchers and participants, enabled a more inclusive method to PPIE (compared with traditional methods) and allowed rapid feedback. Challenges included maintaining the group, which was more labour intensive than anticipated and managing members' expectations. Suggestions for best practice include clear communication about the purpose of the group, assigning a group co‐ordinator to be the main point of contact for the group, and a research team who can dedicate the time necessary to maintain the group. Conclusion: The use of a closed Facebook group can facilitate effective PPIE. Its flexibility can be beneficial for researchers, patients and public who wish to engage in the research process. Dedicated time for sustained group engagement is important. Patient or Public Contribution: Patient representatives were engaged with the development of the research described in this paper and a patient representative reviewed the manuscript. [ABSTRACT FROM AUTHOR]

Background: Based on subjective experience, patients can identify research priorities important for health services research. A systematic method for priority setting has been developed by the James Lind Alliance. Objective: This article reviews the literature on the research priorities of patients, caregivers and health‐care professionals and presents the prioritized research themes and prioritization methods used. Search strategy: Three electronic databases were searched on 22 May 2018. The search was not limited to any time period or language. Inclusion criteria: The included studies reported the identification and prioritization of research priorities involving patients, relatives and caregivers. Each included paper addressed a specific ICD‐coded health problem, and at least one‐third of the sample involved in the prioritization process was affected by the health problem. Data extraction and synthesis: The 10 top‐ranked research priorities were included in the thematic analysis. With an inductive approach, a system of identified themes and subthemes was developed from the research priorities. Each research priority was assigned to one research theme. Main results: The priority lists of 34 publications involving 331 research priorities were included. Nine main themes represent the content of the research priorities. The most frequently represented main themes are 'Treatment', 'Patients' and 'Health condition'. The distribution of the research priorities varied depending on the health conditions and prioritization methods. Discussion and conclusions: This review provides a comprehensive overview of the overarching research themes in research priorities of affected individuals. The results can guide future patient‐oriented research. [ABSTRACT FROM AUTHOR]

Editorial. Highlights the topics discussed at the International Conference on Treatment Decision-Making in the Clinical Encounter held in Hamilton, Ontario. Type and amount of involvement that patients want in treatment decision-making; Different physician communication styles; Different approaches to treatment decision-making; Roles of patients and physicians in treatment decision-making.

Introduction: Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment‐related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens. Methods: A qualitative design was used with semi‐structured interviews (online or in‐person) with participants recruited through audiology services and nonclinical services, such as lip‐reading classes. Forty‐six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data. Results: The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology). Conclusions: The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld‐led care, family‐centred care and peer support to build support for those with hearing loss. Patient or Public Contribution: We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co‐authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript. [ABSTRACT FROM AUTHOR]

This paper considers some of the policy implications of issues raised during a conference about treatment decision-making in the clinical encounter held in Hamilton, Ontario in May 1999. Policies promoting patient participation in treatment decision-making need to be flexible enough to ensure that they are appropriate across the range of contexts in which health care decisions are made and acceptable to people with diverse preferences and abilities. They should also be formulated in consideration of other health policies and of available resources. Policies of informing people and involving them in decisions about their care are unlikely to be simple to implement. Various strategies might be needed to support them. These include the development of appropriate skills among health professionals and in the general population, the use of interventions to encourage people to play more active roles in decisions about their health care, the provision of decision aids for people facing specific decisions and the provision and accreditation of more general information resources and services. If information and other facilitators of patient participation in decision-making are seen as integral to good quality health care, then funding should be made available for them. This will, however, have opportunity costs. Policy makers’ decisions about how much health care funding should be invested in which strategies should be underpinned by good research evidence about the effects that different types of intervention have on a range of outcomes for individuals, health care systems and populations. The knowledge on which current policies are based is limited. The development of future policies will be enhanced if policy makers invest in critical conceptual thinking, reflective practice, imaginative development work and good quality evaluative research. [ABSTRACT FROM AUTHOR]

Background: Evidence shows that online interventions could prevent depression. However, to improve the effectiveness of preventive online interventions in individuals with subthreshold depression, it is worthwhile to study factors influencing intervention outcomes. Outcome expectancy has been shown to predict treatment outcomes in psychotherapy for depression. However, little is known about whether this also applies to depression prevention. The aim of this study was to investigate the role of participants' outcome expectancy in an online depression prevention intervention. Methods: A secondary data analysis was conducted using data from two randomised‐controlled trials (N = 304). Multilevel modelling was used to explore the effect of outcome expectancy on depressive symptoms and close‐to‐symptom‐free status postintervention (6–7 weeks) and at follow‐up (3–6 months). In a subsample (n = 102), Cox regression was applied to assess the effect on depression onset within 12 months. Explorative analyses included baseline characteristics as possible moderators. Outcome expectancy did not predict posttreatment outcomes or the onset of depression. Results: Small effects were observed at follow‐up for depressive symptoms (β = −.39, 95% confidence interval [CI]: [−0.75, −0.03], p =.032, padjusted =.130) and close‐to‐symptom‐free status (relative risk = 1.06, 95% CI: [1.01, 1.11], p =.013, padjusted = 0.064), but statistical significance was not maintained when controlling for multiple testing. Moderator analyses indicated that expectancy could be more influential for females and individuals with higher initial symptom severity. Conclusion: More thoroughly designed, predictive studies targeting outcome expectancy are necessary to assess the full impact of the construct for effective depression prevention. Patient or Public Contribution: This secondary analysis did not involve patients, service users, care‐givers, people with lived experience or members of the public. However, the findings incorporate the expectations of participants using the preventive online intervention, and these exploratory findings may inform the future involvement of participants in the design of indicated depression prevention interventions for adults. Clinical Trial Registration: Original studies: DRKS00004709, DRKS00005973; secondary analysis: osf.io/9xj6a. [ABSTRACT FROM AUTHOR]

Background and Objective: To improve quality, child and adolescent mental health services (CAMHS) are expected to quantify families' views on healthcare with user satisfaction measures. As little is known about what influences satisfaction in CAMHS, this study aimed to examine predictors of adolescents' and parents' user satisfaction. Methods: Data from 231 adolescents and 495 parents in treatment at an outpatient clinic who returned a user satisfaction measure, the Experience of Service Questionnaire (ESQ), was analyzed. Registry data on background, clinical and service characteristics were predictors for the ESQ factors general satisfaction, satisfaction with care and satisfaction with environment. Results: In regression models, satisfaction with care for adolescents (r2 =.12) was significant and was predicted by low parent‐self‐reported mental health burden and low clinician‐rated overall symptom burden at intake. For parents, regression models for general satisfaction (r2 =.07), satisfaction with care (r2 =.06) and satisfaction with environment (r2 =.08) were significant. Parents general satisfaction was predicted by higher levels of hyperactivity, less family stress and longer travelling distances to the service. Satisfaction with care for parents was predicted by higher levels of hyperactivity at intake and longer travelling distances. Satisfaction with environment for parents was more likely if the adolescents was a boy, with low levels of family stress and longer travelling distances. Conclusion: Predictors for adolescent and parent user satisfaction in CAMHS differ. Hence, to improve quality CAMHS should enhance focus on collaborative practice with parents, and person‐centred care for adolescents with moderate to severe mental health illness. Patient or Public Contribution: Representatives from the hospitals' youth panel and the non‐governmental organization called The Change Factory have been consulted regarding study design and results. [ABSTRACT FROM AUTHOR]

Background: Fear of side‐effects can result in non‐adherence to medical interventions, such as medication and chemotherapy. Side‐effect expectations have been identified as strong predictors of later perception of side‐effects. However, research investigating predictors of side‐effect expectations is disparate. Objective: To identify factors associated with side‐effect expectations. Search strategy: We systematically searched Embase, Ovid MEDLINE, Global Health, PsycARTICLES, PsycINFO, Web of Science and Scopus. Inclusion criteria: Studies were included if they investigated associations between any predictive factor and expectations of side‐effects from any medical intervention. Data extraction and synthesis: We extracted information about participant characteristics, medication, rates of side‐effects expected and predictors of side‐effect expectations. Data were narratively synthesized. Main results: We identified sixty‐four citations, reporting on seventy‐two studies. Predictors fell into five categories: personal characteristics, clinical characteristics, psychological traits and state, presentation format of information, and information sources used. Using verbal risk descriptors (eg 'common') compared to numerical descriptors (eg percentages), having lower quality of life or well‐being, and currently experiencing symptoms were associated with increased side‐effect expectations. Discussion and conclusions: Decreasing unrealistic side‐effect expectations may lead to decreased experience of side‐effects and increased adherence to medical interventions. Widespread communications about medical interventions should describe the incidence of side‐effects numerically. Evidence suggests that clinicians should take particular care with patients with lower quality of life, who are currently experiencing symptoms and who have previously experienced symptoms from treatment. Further research should investigate different clinical populations and aim to quantify the impact of the media and social media on side‐effect expectations. [ABSTRACT FROM AUTHOR]

Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]

Introduction: Maternity services underwent much change during the COVID‐19 pandemic. Research on the impact on miscarriage care and experiences during this time is sparse. Within a national evaluation of recurrent miscarriage care, we qualitatively explored stakeholder views and experiences of recurrent miscarriage services in Ireland. This study describes the impact of the COVID‐19 pandemic on those experiences and perceptions of care. Methods: People with professional and lived experience of recurrent miscarriage and service engagement were actively involved in this qualitative study from idea generation to analysis and reporting. We recruited women and men with two or more consecutive first‐trimester miscarriages, and people involved in the management/delivery of recurrent miscarriage services and supports. We used purposive sampling to ensure that perspectives across disciplinary or lived experience, geographical, and health service administrative areas, were included. We conducted semi‐structured interviews, virtually all due to COVID‐19 restrictions, between June 2020 and February 2021. These were audio‐recorded, and data were transcribed, and subsequently analyzed using reflexive thematic analysis. Results: We interviewed 42 service providers and 13 women and 7 men with experience of recurrent miscarriage. We actively generated two central themes during data analysis. The first—'Disconnected'—describes how many women navigated miscarriage diagnosis and management and care in subsequent pregnancies alone; many felt that this resulted in increased trauma. At the same time, men struggled with not being present to support their partners and described feeling disconnected. The second theme highlighted 'The perceived dispensability of recurrent miscarriage services and supports'. Some service providers felt that service reduction and redeployment demonstrated a lack of value in the service. Virtual clinics facilitated access to services, but a preference for in‐person care was highlighted. Conclusion: Our analysis provides rich insights into the significant impacts that the COVID‐19 pandemic has had on the way recurrent miscarriage care is provided and experienced, with important implications for early pregnancy, miscarriage and recurrent miscarriage care. Services have undergone significant changes and, while these may be temporary, how services should be delivered in the future requires consideration, particularly given the deficits in care and care experiences highlighted prepandemic. Patient or Public Contribution: Members of the multidisciplinary RE:CURRENT Project Research Advisory Group (including four parent advocates, two of whom are co‐authors on this article) were actively involved throughout the study, including the generation of topic guides and the refining of themes. [ABSTRACT FROM AUTHOR]

Introduction: Following 2016 legislation permitting limited access to cannabis for research and medicinal purposes, the number of randomized clinical trials (RCTs) investigating the effectiveness of medicinal cannabis (MC) on symptom burden relief in cancer contexts has increased in Australia. This study aimed to understand the perceptions, hopes and concerns of people with advanced cancer regarding the future availability and regulation of MC in Australia. Methods: This qualitative study draws on semistructured interviews conducted between February 2019 and October 2020 in Brisbane, Australia, as part of an MC RCT substudy. Interviews were undertaken on 48 patients with advanced cancer in palliative care eligible to participate in an MC trial (n = 26 participated in an RCT; n = 2 participated in a pilot study; n = 20 declined). Interviews included a discussion of patients' decision‐making regarding trial participation, concerns about MC and perceptions of future availability, including cost. Transcribed interviews were analysed inductively and abductively, informed by constructivist thematic analysis conventions. Results: Overall, participants supported making MC legally accessible as a prescription‐only medication. Fear of financial toxicity, however, compromised this pathway. Steep posttrial costs of accessing MC prompted several people to decline trial participation, and others to predict—if found effective—that many would either access MC through alternative pathways or reduce their prescribed dosage to enable affordable access. Conclusions: These findings suggest that—despite a relatively robust universal healthcare system—Australians are potentially vulnerable to and fearful of financial toxicity. Prevalent in the United States, financial toxicity occurs when disadvantaged cancer patients access necessary but expensive medications with lasting consequences: bankruptcy, ongoing anxiety and cancer worry. Interview transcripts indicate that financial fears—and the systems sustaining them—may pose a threat to RCT completion and to equitable access to legal MC. Such findings support calls for embedding qualitative substudies and community partnerships within RCTs, while also suggesting the importance of subsidisation to overcoming injustices. Patient or Public Contribution: A patient advisory committee informed RCT design. This qualitative substudy foregrounds patients' decision‐making, perceptions and experiences. [ABSTRACT FROM AUTHOR]

The article highlights the implications for shared treatment decision making of behavioral research. This shows that people's predictions of their future preferences, defined as positive or negative feelings and emotions to future events, are not very accurate. Particularly, the authors state that people tend to overestimate how negatively or positively they will react to the consequences of a given future event.

Background: Poor health outcomes amongst marginalized groups result in part from health inequities related to social and structural determinants of health. Marginalized people report higher incidences of comorbidities, chronic disease and adverse health behaviours than their nondisadvantaged peers. The objective of this review is to examine marginalized Australians' experiences of and access to community‐based primary health services in urban locations. Methods: A systematic search incorporating related MeSH terms and synonyms pertaining to marginalized Australian populations and their health‐seeking was conducted across seven databases. We included qualitative studies that reported experiences of health‐seeking within community‐based primary health care in metropolitan Australia. Participant populations experiencing marginalization due to social stigma and isolation, early‐life disadvantage, poor health and/or financial hardship were included. A meta‐ethnographic framework was used to synthesize themes across selected studies and researcher triangulation was employed to develop higher‐order themes. Results: Search results revealed 26 studies included for critical appraisal and synthesis. Seven higher‐order themes were developed describing experiences of health service engagement amongst marginalized groups: (1) Understanding the patient within the context of family and community, (2) Health and cultural beliefs influence health‐seeking, (3) Lack of information and poor cultural competence limit utilization of services, (4) Motivation for treatment influences health service engagement, (5) Accessing services, a spectrum of experience—from discrimination to validation, (6) Navigating a complex system in a complex society, (7) Preferences for health care and expectations for systemic change. Conclusion: Marginalized Australians experience health disadvantage across micro, meso and macro levels of health system navigation and commonalities in health‐seeking were identified across each of the distinct marginalized groups in our analysis. This review outlines important areas of consideration for health care provision and policy development essential to helping address health inequities for a diversity of marginalized populations. Patient or Public Contribution: Whilst patient voices were reported across all studies included within this review, no further patient or public contribution applies to this study. [ABSTRACT FROM AUTHOR]

Background: In many jurisdictions worldwide, individuals with a mental illness may be forced to receive care and treatment in the community. In Australia, legislation states that such care should be driven by a care plan that is recovery‐focussed. Key components in the care planning process include engagement and decision‐making about a person's support needs and care options, with trust being an essential component of care planning relationships. Objective: This study examines how these components were enacted during service care contacts for individuals on community treatment orders. Methods: The study was located at two community mental health teams in South Australia. Ethnographic observations of care planning discussions between consumers, their carers and clinicians, and interviews with individuals from these groups, were conducted over 18 months. Carspecken's critical ethnography provided a rigorous means for examining the data to identify underlying cultural themes that were informing day‐to‐day care interactions. Results: Care planning was not occurring as it was intended, with service culture and structures impeding the development of trusting relationships. Clinicians striving to work collaboratively with consumers had to navigate a service bias and culture that emphasized a hierarchy of 'knowing', with consumers assumed to have less knowledge than clinicians. Conclusions: Services and clinicians can challenge prejudicial ethical injustice and counter this through testimonial justice and implementation of tools and approaches that support genuine shared decision‐making. Patient or Public Contribution: This study included individuals with lived experience of mental illness, their carers and clinicians as participants and researchers. [ABSTRACT FROM AUTHOR]

Background: Adherence to ADHD medication is a complex phenomenon as the decision to adhere is influenced by a range of factors. To design tailored interventions to promote adherence, it is important to understand the factors that influence adherence in the context of its three phases: initiation, implementation and discontinuation. Objective: The objective of this study was to explore the phase‐specific factors that influence adherence to medication in adults who have a diagnosis of ADHD. Methods: Three focus groups (FGs) were conducted with twenty adults with ADHD in different metropolitan areas of Sydney, Australia. FGs were transcribed verbatim and thematically analysed. Results: Participants' decision to initiate medication (the initiation phase) was influenced by their perceived needs (desire to improve academic and social functioning) and concerns (fear of side‐effects) about medication following a similar process as defined by the Necessity‐Concerns Framework (NCF). The balance between benefits of medication (needs) and side‐effects (concerns) continued to determine participants' daily medication‐taking (the implementation phase) and persistence (or discontinuation) with their medication. Forgetfulness and stigma were reported as concerns negatively impacting the implementation phase, while medication cost and dependence influenced the discontinuation phase of adherence. Conclusions: Adults' decision to initiate, continue or discontinue medication is influenced by a range of factors; some are unique to each phase while some are common across the phases. Participants balanced the needs for the medication against their concerns in determining whether to adhere to medication at each phase. It appears that the NCF has applicability when decision making about medication is explored at the three phases of adherence. [ABSTRACT FROM AUTHOR]

Objective: This study examined the influence of physicians' recommendations and gender on the decision‐making process in a preference‐sensitive situation. Methods: N = 201 participants were put in a hypothetical scenario in which they suffered from a rupture of the anterior cruciate ligament (ACL). They received general information on two equally successful treatment options for this injury (surgery vs physiotherapy) and answered questions regarding their treatment preference, certainty and satisfaction regarding their decision and attitude towards the treatment options. Then, participants watched a video that differed regarding physician's recommendation (surgery vs physiotherapy) and physician's gender (female vs male voice and picture). Afterwards, they indicated again their treatment preference, certainty, satisfaction and attitude, as well as the physician's professional and social competence. Results: Participants changed their treatment preferences in the direction of the physician's recommendation (P <.001). Decision certainty (P <.001) and satisfaction (P <.001) increased more strongly if the physician's recommendation was congruent with the participant's prior attitude than if the recommendation was contrary to the participant's prior attitude. Finally, participants' attitudes towards the recommended treatment became more positive (surgery recommendation: P <.001; physiotherapy recommendation: P <.001). We found no influence of the physician's gender on participants' decisions, attitudes, or competence assessments. Conclusion: This research indicates that physicians should be careful with recommendations when aiming for shared decisions, as they might influence patients even if the patients have been made aware that they should take their personal preferences into account. This could be particularly problematic if the recommendation is not in line with the patient's preferences. [ABSTRACT FROM AUTHOR]

Background: Stem cell therapy is a novel treatment option for people living with osteoarthritis. Research investigating stem cell therapy for this debilitating condition has predominantly involved the pathogenesis of the cells and efficacy of the treatment. There is little understanding of patients' expectations and experiences of stem cell therapy treatment. Objective: To explore the expectations and experiences of people undergoing stem cell therapy for the treatment of knee osteoarthritis. Design: An exploratory, descriptive, qualitative study using semi‐structured interviews was conducted. Setting and participants: Participants were recruited into two groups: (a) Expectations Group (n = 15); the expectations of stem cell treatment were explored with participants that were yet to commence stem cell therapy. (b) Experiences Group (n = 15); the experiences of stem cell therapy were explored with participants 12 months after their initial stem cell treatment. Transcripts were analysed using thematic analysis to identify themes in both groups. Results: Themes for the Expectations Group were active involvement in the treatment; treatment will improve symptoms; and benefits of treatment outweigh the risks. Themes for the Experiences Group were symptoms of treatment; satisfaction with treatment; and anticipation of further improvement. Discussion and conclusions: The findings are the first qualitative study to represent patients' perspective on expectations and experiences of stem cell therapy for knee osteoarthritis. They provide insight into the potential areas for improvement within this field to aid patients' preparation and approach to the treatment, promoting patient‐centred care. [ABSTRACT FROM AUTHOR]

Abstract: Background: Primary hypothyroidism is a common endocrine disorder, more so in an increasing UK ageing population. There is no qualitative research examining the older patient perspective of symptoms, treatment and self‐management of hypothyroidism. Objective: In this study we explored the experience of hypothyroidism in older people and examined how this may influence their understanding and acceptance of diagnosis, treatment with Levothyroxine and the monitoring process. Design: We conducted semi‐structured interviews with 18 participants aged between 80 and 93 years. Interview transcripts were analysed using a thematic approach. Results: The themes involved older individuals’ knowledge about symptoms, confidence in diagnosis and understanding of clinical management regimen to understand hypothyroidism. Interpretation of the themes was informed by the Health Belief Model. Conclusion: Our findings can help to inform the development of interventions by treating clinicians and support staff to engage older patients in the long‐term management of this chronic condition. [ABSTRACT FROM AUTHOR]

Background Patient decision support tools have been developed as a means of providing accurate and accessible information in order for patients to make informed decisions about their care. Option Grids™ are a type of decision support tool specifically designed to be used during clinical encounters. Objective To explore patients' views of the Option Grid encounter tool used in clinical consultations with physiotherapists, in comparison with usual care, within a patient population who are likely to be disadvantaged by age and low health literacy. Methods Semi-structured interviews with 72 patients (36 who had been given an Option Grid in their consultation and 36 who had not). Thematic analysis explored patients' understanding of treatment options, perceptions of involvement, and readability and utility of the Option Grid. Results Interviews suggested that the Option Grid facilitated more detailed discussion about the risks and benefits of a wider range of treatment options for osteoarthritis of the knee. Participants indicated that the Option Grid was clear and aided their understanding of a structured progression of the options as their condition advanced, although it was not clear whether the Option Grid facilitated greater engagement in shared decision making. Discussion and conclusion The Option Grid for osteoarthritis of the knee was well received by patient participants who reported that it helped them to understand their options, and made the notion of choice explicit. Use of Option Grids should be considered within routine consultations. [ABSTRACT FROM AUTHOR]

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<.001) and decisional conflict ( P<.001), and no differences were observed in treatment intention, preferences for participation, or concordance. One of the scales developed to measure goals and concerns showed validity issues. Conclusion The decision aid 'Decision making in depression' is effective improving knowledge of treatment options and reducing decisional conflict of patients with unipolar depression. More research is needed to establish a valid and reliable measure of concordance between patients' goals and concerns regarding pharmacological and psychological treatment, and the choice made. [ABSTRACT FROM AUTHOR]

Objective This study discusses the challenges and successes of engaging young people in a project aimed at developing an online counselling intervention for young people affected by cancer. Context For younger people with a diagnosis of cancer or who are caring for someone with cancer, the psychosocial consequences can create significant challenges for their social and educational development. Whilst young people have been shown to be reluctant to make use of traditional face-to-face counselling, research is beginning to suggest that effective therapeutic relationships can be formed with young people online. Design The first phase of the study involved working with a 'Young Persons' Panel' of healthy school pupils and university students to develop and pilot an online counselling intervention and study materials in preparation for a pilot evaluation of the intervention. Intervention An avatar-based virtual reality counselling world was created where young people can create their own avatar and receive counselling over the Internet from a qualified counsellor via an avatar in a virtual reality world. Findings The process of engaging young people in the C: EVOLVE project enabled a unique intervention to be developed and demonstrated positive developmental opportunities. However, despite the rigorous approach to the development of the intervention, initial attempts within the pilot evaluation phase of the study showed difficulties recruiting to the study, and this phase of the study has currently ceased whilst further exploratory work takes place. Conclusion This study has demonstrated the complexities of intervention development and evaluation research targeted at young people and the challenges created when attempting to bring clinical practice and research evaluation together. [ABSTRACT FROM AUTHOR]

The article focuses on the patients decision making on bronchiectasis treatment. Topics mentioned include the public health management, the chronic disease treatment, and the patient's quality of life management. Also mentioned are the importance of bronchiectasis diagnosis, the health-care monitoring management, and the side effects of antibiotics.

Objective Current government policies simultaneously pursue the development of ‘patient-led’ and ‘evidence-based’ approaches to healthcare. The objective of this study was to explore how primary care clinicians and Primary Care Trust (PCT) managers balance these potentially competing tensions when considering popular, controversial treatments, like complementary therapies, in consultations (clinicians) or funding decisions (PCT managers). Setting and participants We selected two case sites where complementary therapies were offered on NHS premises in England. We interviewed 18 PCT managers and clinicians, conducted an observation of a PCT meeting on complementary therapies and collected documentary data from referral databases and service funding bids. All interviews were taped, transcribed and analysed thematically. Interview, observation and documentary data were used to compare reported beliefs and behaviour to observed and documented behaviour. Results The majority of clinicians and PCT managers claimed that research evidence guided their decisions; those who did not felt increasingly marginalized. However, discrepancies between reported and observed behaviour suggest that perceptions of research evidence, rather than fact based knowledge, predominated when considering complementary therapies. Conclusion In the case of NHS complementary therapy service provision, patient preference may be largely insignificant in clinician and PCT managerial decisions, with decisions based mainly on ‘evidence rhetoric’ devised from collectively agreed, unchallenged, tacit perceptions of research literature. If a patient-led NHS is to become a reality, NHS professionals need to cede the power that they wield with evidence rhetoric and acknowledge the legitimacy of patient preferences, views and alternative sources of evidence. [ABSTRACT FROM AUTHOR]

Background What role do people want to play in treatment decision-making (DM)? Objective Examine the role patients indicate they would prefer in making treatment decisions across multiple clinical settings in Ontario, Canada. Design Secondary analysis of a series of survey/interview-based studies measuring preferred role, conducted in 12 different populations. Setting and participants Respondents were outpatients, largely but not entirely attending outpatient clinics in large teaching hospitals in urban settings in the Province of Ontario, Canada. The subgroups and sample sizes were: breast cancer (202), prostate disease (202), fractures (202), continence (46), orthopaedic (111), rheumatology (56), multiple sclerosis (22), HIV/AIDS (431), infertility (454), benign prostatic hyperplasia (678) and cardiac disease (300), plus 50 healthy nursing students (for scale validation). Measurements All studies categorized preferred role using the Problem-Solving Decision-Making (PSDM) scale with one or both of the Current Health condition and Chest Pain vignettes. Results Few respondents preferred an autonomous role (1.2% for the current health condition vignette and 0.7% for the chest pain vignette); most preferred shared DM (77.8% current health condition; 65.1% chest pain) or a passive role (20.3% current health condition; 34.1% chest pain). Familiarity with a clinical condition increases desire for a shared (as opposed to passive) role. Preferences for passive vs. shared roles varied across settings; older and less educated individuals were most likely to prefer passive roles. Conclusions Despite consumerist rhetoric among some bioethicists, very few respondents wish an autonomous role. Most wish to share DM with their providers. [ABSTRACT FROM AUTHOR]

In recent years, shared decision-making between patients and doctors regarding choice of treatment has become an issue of priority. Although patients’ preferences lie at the core of the literature on shared decision-making, there has not been any attempt so far to link the concept of shared decision-making with the extensive behavioural literature on people's self-predictions of their future preferences. The aim of the present review is to provide this link. First, we summarize behavioural research that suggests that people mispredict their future preferences and feelings. Secondly, we provide the main psychological accounts for people's mispredictions. Thirdly, we suggest three main empirical questions for inclusion in a programme aimed at enriching our understanding of shared decision-making and improving the procedures used for putting it into practice. [ABSTRACT FROM AUTHOR]

Background Many decision aids have been developed to help patients make treatment and screening decisions; however, little is known about implementing them into routine clinical practice. Objective To assess the feasibility of implementing a patient decision aid (PtDA) for the early stage breast cancer surgical decision into routine clinical care. Design Structured individual interviews. Setting and participants A convenience sample of providers from nine sites, including two community resource centres, a community hospital and six academic centres. Main outcome measures Usage data, barriers to and resources for implementing the PtDAs. Results Six of the nine sites were using the PtDAs with patients. Two sites were primarily using a scheduling system and four sites relied on a lending system. For the academic centres, the keys to successful implementation included integrating the PtDA into the flow of patients through the centre and having physicians who recommended it to patients. At the community centres, the keys to successful implementation included an informed staff and the flexibility to get the PtDAs to patients in different ways. Barriers that limited or prevented sites from using the PtDA included a lack of clinical support, a lack of system support, competing priorities and scheduling problems. Conclusions It is feasible to implement a breast cancer PtDA into routine clinical care at academic centres and community resource centres. Future research should assess the effectiveness of PtDAs in routine clinical care as well as resources and barriers to their implementation in community hospitals. [ABSTRACT FROM AUTHOR]

Objective To investigate opportunities for, and types of decision making in the general practice (primary care) consultation, and examine differences in skills of those doctors who are successful at meeting their patients’ preferences and those who are less successful. Design Observation study of doctor–patient consultations in general practice. Participants Patients attending for routine appointments in 12 general practice surgeries across Oxfordshire. Methods A total of 212 doctor–patient consultations were video-recorded. The patients involved completed a questionnaire to elicit their perceptions of how decisions were made. The video-taped recordings were coded with a new instrument, the Evidence Based Patient Choice Instrument (EBPCI), to classify the number and type of decision-making opportunities arising during each consultation. A total of 149 recordings were coded using the Oxbridge Rating Scale to assess the doctors’ consultation styles. Results There was a range of decision-making opportunities in addition to those involving medical treatment. With the exception of ‘fitness for work’, decisions were generally ‘doctor led’. There was only moderate agreement between patient perceptions of their level of involvement in decision making and the objective ratings using the EBPCI. There was wide variation in the ability of doctors to meet their patients’ preferences for involvement. Conclusions There are many decisions made in primary care consultations, in addition to those about medical treatments, in which patients could be involved to a greater extent than they currently are. Some doctors are significantly better than others at meeting different patients’ preferences for their decision-making role. Patients’ perceptions of shared decision making appears to be influenced by the doctors’ general consultation skills. [ABSTRACT FROM AUTHOR]

To elicit patients’ preferences for the treatment of angina. Angina patients were interviewed in order to elicit their personal reasons underlying preferences for various treatment options. Interviews followed a general repertory grid technique, in which seven treatment options were presented to patients in triads. Treatments considered ranged from medication to invasive revascularization therapies, with a ‘no treatment’ option. Two general practices in Norwich, Norfolk. Twenty-one patients with diagnosed angina, which was both mild and stable. Treatment preferences verbalized by patients during interview, and the underlying reasons for these. Attitudes voiced towards the range of treatments for angina were diverse; 27 different reasons underlying patients’ preferences were identified. Patients’ preferences were largely justified by reasons associated with the conditional effectiveness or otherwise of treatments. When presented with treatment triads, medication (drug) treatments were over 2.5 times more likely to be chosen as a most preferred option than invasive or surgical treatments. Although surgical treatments were generally considered to be ‘effective’, it was perceived that they were more appropriate for situations when the condition became life-threatening. There were occasions, however, when preferences were driven by other reasons, such as a desire to avoid surgery because it was perceived negatively as ‘invasive’ and ‘frightening’. Drug treatments were viewed as ‘quick’, ‘easy’ and reversible. Personal experiences of the effectiveness or otherwise of treatments were frequently cited as reasons for stated preferences. However, patients often commented that they would prefer the doctor to make the decision about their treatment. Patients choices among treatments was largely driven by perceptions of their effectiveness or otherwise. Although surgery was perceived as ‘effective’ it was also seen as conditionally so, dependent upon severity of the condition – which is not necessarily the case, as the risks of adverse events and surgical complications increase for emergency cases. As such, access to better information about the effectiveness and timeliness of interventions is needed. Although respondents held anxieties about treatment, particularly invasive or surgical treatments, fewer choices were driven by emotional and lifestyle factors unrelated to ‘effectiveness’, such as fear or ease of treatment. [ABSTRACT FROM AUTHOR]

To involve users in the design of a research project that aims at describing a 12-month course of low back pain in an adult population sample (epidemiological strand), and to determine how patient and professional perceptions of low back pain and its treatment relate to the use of health-care and to subsequent outcome (qualitative strand). Three focus groups were organized in the preparatory phase of the project with general practitioners, other health professionals and low back pain sufferers. Issues pertaining to the experience of living with, or treating low back pain were explored and users were asked to identify relevant research questions for consideration within the study. The focus groups revealed tensions between involving users as co-researchers for design issues and their role as sufferers and health professionals who want to share their narrative accounts of low back pain. The group discussions produced a wealth of material for analysis, but no explicitly stated research topics. Three key themes and the process of user involvement in the focus groups are discussed. The focus group format could be restrictive in that it allows for detailed exchange between participants, but is insufficiently geared towards the production of a research agenda. We draw conclusions as to possible approaches for user involvement in health services research design. [ABSTRACT FROM AUTHOR]

The case of Jaymee Bowen (child B) illustrated the conflict that may arise over treatment decisions in the National Health Service (NHS). This article reviews four further cases involving disagreement between patients and families on the one hand, and health authorities on the other, and a fifth case in which a health authority questioned the treatment decision of a medical specialist. The cases illustrate the rise of consumerism in health care and the challenge for health authorities in weighing the claims of individual patients against the needs of communities. They also demonstrate the increasing role of lawyers and the courts in resolving disputes over treatment decisions. Clinicians were closely involved in all cases, both in recommending treatment options and in serving as independent advisers when disputes arose. The findings presented here indicate that there is a need to strengthen the process of decision-making in cases of this kind and to make greater use of evidence in informing decisions. In future, decision-making needs to be characterized by openness, reason giving, an appeals procedure and regulation of the process to ensure that these conditions are met. The funders of health care also need to consider each individual in his or her own right while also using their resources for the benefit of the population as a whole. [ABSTRACT FROM AUTHOR]