Impact of Long Covid on the school experiences of children and young people: a qualitative study.

OBJECTIVES: To explore the impact of Long Covid (LC) on the school experiences of children and young people (CYP). DESIGN: Qualitative study using narrative interviews. PARTICIPANTS: 22 CYP (aged 10-18 years, 15 female) with LC and 15 parents/caregivers (13 female) of CYP (aged 5-18 years) with LC. SETTING: Interviews were conducted between October 2021 and July 2022 via online video call or telephone. Recruitment routes included social media, LC support groups, clinicians, community groups and snowballing. RESULTS: Three key findings were identified. Finding 1: Going to school is a valued part of CYP's lives and participants viewed educational attainment as important for their future trajectories. Returning to school full time was highlighted as a key part of regaining 'normal life'. Finding 2: Attending school (in-person or online) with LC is extremely difficult; even a gradual return required CYP to balance the impact of being at and engaging with school, with the need to manage symptoms to prevent relapse. Often this meant prioritising school and rest over other aspects of their lives. Finding 3: School responses to CYP with LC were reported to be mixed and hampered by difficulties communicating with healthcare professionals during the pandemic and a lack of awareness of LC among healthcare and education professionals. Participants viewed supportive school responses as staff believing, understanding and taking them seriously, alongside schools offering tailored and flexible adaptations which allowed engagement with school while limiting any deterioration of symptoms. CONCLUSIONS: This study describes how LC affects the school experiences of CYP and generates recommendations for supportive school responses alongside supportive healthcare professionals. Further research could explore the approaches that facilitate a successful return to school for CYP with LC and investigate education professionals' perspectives on support they require to positively engage with returning pupils.

'Using humanity to change systems' - understanding the work of online feedback moderation: A case study of Care Opinion Scotland.

OBJECTIVE: To gain a deeper understanding of online patient feedback moderation through the organisation of Care Opinion in Scotland. METHODS: An ethnographic study, initially using in-person participant observations, switching to remote methods due to the pandemic. This involved the use of remote observations and interviews. Interviews were carried out with the whole Scottish team (n = 8). RESULTS: Our results identify three major themes of work found in online patient feedback moderation. The first is process work, where moderators make decisions on how to edit and publish stories. The second is emotional labour from working with healthcare experiences and with NHS staff. The third is the brokering/mediation role of Care Opinion, where they must manage the relationships between authors, subscribing healthcare providers and Scottish Government. Our results also capture that these different themes are not independent and can at times influence the others. CONCLUSION: Our results build on previous literature on Care Opinion and provide novel insights into the emotional and brokering/mediation work they undertake. Care Opinion holds a unique position, where they must balance the interests of the key stakeholders. Care Opinion holds the power to amplify authors' voices but the power to make changes to services lies with NHS staff and services. Online moderation work is complex, and moderators require support to carry out their work especially given the emotional impact. Further research is planned to understand how patient stories are used by NHS Scotland, and the emotional labour involved with stories, from both the author and NHS staff perspective.

Mental-physical multimorbidity treatment adherence challenges in Brazilian primary care: A qualitative study with patients and their healthcare providers.

Improved understanding of multimorbidity (MM) treatment adherence in primary health care (PHC) in Brazil is needed to achieve better healthcare and service outcomes. This study explored experiences of healthcare providers (HCP) and primary care patients (PCP) with mental-physical MM treatment adherence. Adults PCP with mental-physical MM and their primary care and community mental health care providers were recruited through maximum variation sampling from nine cities in São Paulo State, Southeast of Brazil. Experiences across quality domains of the Primary Care Assessment Tool-Brazil were explored through semi-structured in-depth interviews with 19 PCP and 62 HCP, conducted between April 2016 and April 2017. Through thematic conent analysis ten meta-themes concerning treatment adherence were developed: 1) variability and accessibility of treatment options available through PHC; 2) importance of coming to terms with a disease for treatment initation; 3) importance of person-centred communication for treatment initiation and maintenance; 4) information sources about received medication; 5) monitoring medication adherence; 6) taking medication unsafely; 7) perceived reasons for medication non-adherence; 8) most challenging health behavior change goals; 9) main motives for initiation or maintenance of treatment; 10) methods deployed to improve treatment adherence. Our analysis has advanced the understanding of complexity inherent to treatment adherence in mental-physical MM and revealed opportunities for improvement and specific solutions to effect adherence in Brazil. Our findings can inform research efforts to transform MM care through optimization.

Acceptability and feasibility of weight management programmes for adults with severe obesity: a qualitative systematic review.

OBJECTIVES: To improve our understanding of the acceptability of behavioural weight management programmes (WMPs) for adults with severe obesity. DESIGN: A systematic review of qualitative evidence. DATA SOURCES: Medline, Embase, PsycINFO, CINAHL, SCI, SSCI and CAB abstracts were searched from 1964 to May 2017. ELIGIBILITY CRITERIA: Papers that contained qualitative data from adults with body mass index (BMI) ≥35 kg/m2 (and/or the views of providers involved in their care) and considered issues about weight management. DATA EXTRACTION AND SYNTHESIS: Two reviewers read and systematically extracted data from the included papers which were compared, and contrasted according to emerging issues and themes. Papers were appraised for methodological rigour and theoretical relevance using Toye's proposed criteria for quality in relation to meta-ethnography. RESULTS: 33 papers met our inclusion criteria from seven countries published 2007-2017. Findings were presented from a total of 644 participants and 153 programme providers. Participants described being attracted to programmes that were perceived to be novel or exciting, as well as being endorsed by their healthcare provider. The sense of belonging to a group who shared similar issues, and who had similar physiques and personalities, was particularly important and seemed to foster a strong group identity and related accountability. Group-based activities were enjoyed by many and participants preferred WMPs with more intensive support. However, some described struggling with physical activities (due to a range of physical comorbidities) and not everyone enjoyed group interaction with others (sometimes due to various mental health comorbidities). Although the mean BMI reported across the papers ranged from 36.8 to 44.7 kg/m2, no quotes from participants in any of the included papers were linked to specific detail regarding BMI status. CONCLUSIONS: Although group-based interventions were favoured, people with severe obesity might be especially vulnerable to physical and mental comorbidities which could inhibit engagement with certain intervention components.

Exploring non-retention in clinical trials: a meta-ethnographic synthesis of studies reporting participant reasons for drop out.

OBJECTIVES: To undertake a meta-ethnographic synthesis of findings from primary studies reporting qualitative data that have explored participant-reported factors influencing non-retention within a clinical trial context. DESIGN: A systematic search and meta-ethnography was conducted for published papers (from 1946 to July 2018) that contained qualitative data from trial non-retainers. PARTICIPANTS: We identified 11 studies reporting qualitative data from 13 trials. The studies were undertaken between 2008 and 2018. Each study included between 3 and 40 people who had dropped out from a trial, with findings from 168 people in total reported across the papers. RESULTS: Emergent from our synthesis was the significance of trial non-retainers' perceptions around the personal 'fit' of key aspects of the trial with their personal beliefs, preferences, capabilities or life circumstances. These related to their own health state; preferences for receiving trial 'care'; individual capabilities; beliefs about or experiences of trial medication and considerations whether trial participation could be accommodated into their broader lives. All these factors raise important issues around the extent to which initial decisions to participate were fully informed. CONCLUSIONS: To improve retention in clinical trials, researchers should work to reduce the burden on trial participants both through the design of the intervention itself as well as through simplified data collection processes. Providing more detail on the nature of the trial interventions and what can be expected by 'participation' at the consenting stage may prove helpful in order to manage expectations.

Jugglers and tightrope walkers: The challenge of delivering quality community pharmacy services.

INTRODUCTION: This is the first exploration of service providers' attitudes and beliefs of quality and quality improvement in the community pharmacy setting in the UK. MATERIALS AND METHODS: A series of interviews and focus groups was conducted with stakeholders from the pharmacy profession in the UK. Interviews were semi-structured and conducted face-to-face or by telephone. Focus groups were conducted with naturally-occurring groups i.e. at pharmacy conferences. Interviews and focus groups were audio-recorded, transcribed and analysed systematically using an interpretive approach. RESULTS: Forty-two individuals participated across four focus groups and four interviews. A maximum variation sample was achieved in terms of pharmacist and pharmacy characteristics. Participants were generally positive about the need for quality and quality improvement and provided multifaceted and interlinked interpretations of quality and acknowledged its dynamic nature "quality moves forward". The challenge of standardising practice whilst providing person-centred care emerged: "you don't want to lose the personal touch, but you can't have people having a variable experience and one day it's fantastic and the next day it isn't". A variety of quality measurement methods were identified including direct observation (by internal and external agents) and feedback (mystery shoppers, colleagues, regulatory inspectors, service users), suggesting that standardisation was also needed in terms of future quality measurement. There was a tendency to report negative events as triggers for improvement. Future initiatives could adopt more positive approaches including positive deviants "There's nothing more powerful than people who've come up with something really good sharing it with their other colleagues". DISCUSSION: The results are being used to develop and evaluate future quality improvement initiatives in this sector. These are likely to be targeted at organisational, team and individual levels.

"The more you know, the more you realise it is really challenging to do": Tensions and uncertainties in person-centred support for people with long-term conditions.

OBJECTIVE: To identify and examine tensions and uncertainties in person-centred approaches to self-management support - approaches that take patients seriously as moral agents and orient support to enable them to live (and die) well on their own terms. METHODS: Interviews with 26 UK clinicians about working with people with diabetes or Parkinson's disease, conducted within a broader interdisciplinary project on self-management support. The analysis reported here was informed by philosophical reasoning and discussions with stakeholders. RESULTS: Person-centred approaches require clinicians to balance tensions between the many things that can matter in life, and their own and each patient's perspectives on these. Clinicians must ensure that their supportive efforts do not inadvertently disempower people. When attending to someone's particular circumstances and perspectives, they sometimes face intractable uncertainties, including about what is most important to the person and what, realistically, the person can or could do and achieve. The kinds of professional judgement that person-centred working necessitates are not always acknowledged and supported. CONCLUSION: Practical and ethical tensions are inherent in person-centred support and need to be better understood and addressed. PRACTICE IMPLICATIONS: Professional development and service improvement initiatives should recognise these tensions and uncertainties and support clinicians to navigate them well.

"Was that a success or not a success?": a qualitative study of health professionals' perspectives on support for people with long-term conditions.

BACKGROUND: Support for self-management (SSM) is a prominent strand of health policy internationally, particularly for primary care. It is often discussed and evaluated in terms of patients' knowledge, skills and confidence, health-related behaviours, disease control or risk reduction, and service use and costs. However, these goals are limited, both as guides to professional practice and as indicators of its quality. In order to better understand what it means to support self-management well, we examined health professionals' views of success in their work with people with long-term conditions. This study formed part of a broader project to develop a conceptual account of SSM that can reflect and promote good practice. METHODS: Semi-structured individual interviews (n = 26) and subsequent group discussions (n = 5 groups, 30 participants) with diverse health professionals working with people with diabetes and/or Parkinson's disease in NHS services in London, northern England or Scotland. The interviews explored examples of more and less successful work, ways of defining success, and ideas about what facilitates success in practice. Subsequent group discussions considered the practical implications of different accounts of SSM. Interviews and group discussions were audio-recorded, transcribed and analysed thematically. RESULTS: Participants identified a wide range of interlinked aspects or elements of success relating to: health, wellbeing and quality of life; how well people (can) manage; and professional-patient relationships. They also mentioned a number of considerations that have important implications for assessing the quality of their own performance. These considerations in part reflect variations in what matters and what is realistically achievable for particular people, in particular situations and at particular times, as well as the complexity of questions of attribution. CONCLUSIONS: A nuanced assessment of the quality of support for self-management requires attention to the responsiveness of professional practice to a wide, complex range of personal and situational states, as well as actions and interactions over time. A narrow focus on particular indicators can lead to insensitive or even perverse judgements and perhaps counterproductive effects. More open, critical discussions about both success and the assessment of quality are needed to facilitate good professional practice and service improvement initiatives.

We need to talk about purpose: a critical interpretive synthesis of health and social care professionals' approaches to self-management support for people with long-term conditions.

BACKGROUND: Health policies internationally advocate 'support for self-management', but it is not clear how the promise of the concept can be fulfilled. OBJECTIVE: To synthesize research into professional practitioners' perspectives, practices and experiences to help inform a reconceptualization of support for self-management. DESIGN: Critical interpretive synthesis using systematic searches of literature published 2000-2014. FINDINGS: We summarized key insights from 164 relevant papers in an annotated bibliography. The literature illustrates striking variations in approaches to support for self-management and interpretations of associated concepts. We focused particularly on the somewhat neglected question of the purpose of support. We suggest that this can illuminate and explain important differences between narrower and broader approaches. Narrower approaches support people to manage their condition(s) well in terms of disease control. This purpose can underpin more hierarchical practitioner-patient communication and more limited views of patient empowerment. It is often associated with experiences of failure and frustration. Broader approaches support people to manage well with their condition(s). They can keep work on disease control in perspective as attention focuses on what matters to people and how they can be supported to shape their own lives. Broader approaches are currently less evident in practice. DISCUSSION AND CONCLUSION: Broader approaches seem necessary to fulfil the promise of support for self-management, especially for patient empowerment. A commitment to enable people to live well with long-term conditions could provide a coherent basis for the forms and outcomes of support that policies aspire to. The implications of such a commitment need further attention.

Strengthening the ethical assessment of placebo-controlled surgical trials: three proposals.

BACKGROUND: Placebo-controlled surgical trials can provide important information about the efficacy of surgical interventions. However, they are ethically contentious as placebo surgery entails the risk of harms to recipients, such as pain, scarring or anaesthetic misadventure. This has led to claims that placebo-controlled surgical trials are inherently unethical. On the other hand, without placebo-controlled surgical trials, it may be impossible to know whether an apparent benefit from surgery is due to the intervention itself or to the placebo effect. DISCUSSION: In this paper we investigate justifications for placebo-controlled surgical trials and suggest three measures for strengthening their ethical acceptability. We argue that, given the extent, irreversibility and cost of surgical interventions, there is a need for the best possible evidence about their efficacy. In some cases, the strongest evidence will be from placebo-controlled surgical trials, especially where interventions are for outcomes (such as pain) that are likely to elicit a placebo response. In the second part of the paper, we propose three specific measures to increase the ethical acceptability of placebo-controlled surgical trials. The first is structured consultation with the relevant patient community about the risks and benefits of particular placebo-controlled surgical trials. The second seeks to address the therapeutic misconception through the use of educational materials, informed by patient consultation. Finally, we argue for ethical consideration of non-surgeon clinicians who are necessarily involved in the delivery of placebo-surgical interventions. SUMMARY: If there is no appropriate surgical comparator and the risks can be reduced to the absolute minimum (given the type of placebo procedure required), and the research has the support of the relevant patient community, there may be grounds for judging that the potential benefits of specific placebo-controlled surgical trials outweigh the risks. If so justified, the ethical acceptability of placebo-controlled surgical trials can be enhanced through using educational measures to address participant vulnerability, and by recognizing clinicians who are necessary participants in the research.

Decision aids for randomised controlled trials: a qualitative exploration of stakeholders' views.

OBJECTIVES: To explore stakeholders' perceptions of decision aids designed to support the informed consent decision-making process for randomised controlled trials. DESIGN: Qualitative semistructured interviews. Participants were provided with prototype trial decision aids in advance to stimulate discussion. Interviews were analysed using an established interpretive approach. PARTICIPANTS: 23 stakeholders: Trial Managers (n=5); Research Nurses (n=5); Ethics Committee Chairs (n=5); patients (n=4) and Clinical Principal Investigators (n=4). SETTING: Embedded within two ongoing randomised controlled trials. All interviews conducted with UK-based participants. RESULTS: Certain key aspects (eg, values clarification exercises, presentation of probabilities, experiences of others and balance of options) in the prototype decision aids were perceived by all stakeholders as having a significant advantage (over existing patient information leaflets) in terms of supporting well informed appropriate decisions. However, there were some important differences between the stakeholder groups on specific content (eg, language used in the section on positive and negative features of taking part in a trial and the overall length of the trial decision aids). Generally the stakeholders believed trial decision aids have the potential to better engage potential participants in the decision-making process and allow them to make more personally relevant decisions about their participation. CONCLUSIONS: Compared to existing patient information leaflets, stakeholders perceived decision aids for trial participation to have the potential to promote a more 'informed' decision-making process. Further efforts to develop, refine and formally evaluate trial decision aids should be explored.

Determining information for inclusion in a decision-support intervention for clinical trial participation: a modified Delphi approach.

BACKGROUND: The use of decision-support interventions in the context of decisions about trial participation is an emergent field. There is a lack of evidence about what information is deemed important to support decisions about informed consent for clinical trials, and whether different groups agree on the information for inclusion. PURPOSE: The overall objective was to determine the items which different stakeholder groups viewed to be important for inclusion in a decision-support tool when making decisions about clinical trial participation, with a view to use these as a framework for developing decision-support tools in this context. This is the first study to have addressed this issue. METHODS: A modified Delphi method was used to determine agreement on importance of items. The 'stakeholder' panel was made up of 49 individuals from 5 groups: 11 trialists, 6 research nurses, 7 ethics committee chairs, 9 decision-support experts, and 16 patients (9 trial experienced and 7 trial non-experienced). Two rounds of rating were completed. Items with a median of 7-10 with ≥65% of any one group (from aggregate ratings) in agreement were considered important for inclusion. RESULTS: The stakeholder panel achieved consensus on the majority of items included (60/66), agreeing that these were important for inclusion in a decision-support tool for trial participation. These included items covering information about trial participation and standard care, information on the likelihood of receiving different treatments, information to help patients determine what matters most to them, ensuring that the information is balanced, guidance on how to make a decision, disclosure of any conflicts of interest, using plain language in the tool, and guidance on the decision-support development process. Some areas of divergence among the panel were also identified relating to the use of patient stories. LIMITATIONS: Selection bias may be a limitation in this study due to the manner in which the participants were invited to take part, and therefore, the representativeness, and reproducibility with another group of stakeholders, may differ. CONCLUSIONS: Agreement was obtained on a number of items, which we recommend should be used as a framework to develop useful tools to support decision-making about participation in clinical trials.

Challenges in the research ethics review of cluster randomized trials: international survey of investigators.

BACKGROUND: Cluster randomized trials (CRTs) complicate the interpretation of standard research ethics guidelines for several reasons. For one, the units of allocation, intervention, and observation often may differ within a single trial. In the absence of tailored and internationally accepted ethics guidelines for CRTs, researchers and research ethics committees have no common standard by which to judge ethically appropriate practices in CRTs. Moreover, lack of familiarity with and consideration of the unique features of the CRT design by research ethics committees may cause difficulties in the research ethics review process, and amplify problems such as variability in the requirements and decisions reached by different research ethics committees. PURPOSE: We aimed to characterize research ethics review of CRTs, examine investigator experiences with the ethics review process, and assess the need for ethics guidelines for CRTs. METHODS: An electronic search strategy implemented in MEDLINE was used to identify and randomly sample 300 CRTs published in English language journals from 2000 to 2008. A web-based survey with closed- and open-ended questions was administered to corresponding authors in a series of six contacts. RESULTS: The survey response rate was 64%. Among 182 of 285 eligible respondents, 91% indicated that they had sought research ethics approval for the identified CRT, although only 70% respondents reported research ethics approval in the published article. Nearly one-third (31%) indicated that they have had to meet with ethics committees to explain aspects of their trials, nearly half (46%) experienced variability in the ethics review process in multijurisdictional trials, and 38% experienced negative impacts of the ethics review process on their trials, including delays in trial initiation (28%), increased costs (10%), compromised ability to recruit participants (16%), and compromised methodological quality (9%). Most respondents (74%; 95% confidence interval (CI): 67%-80%) agreed or strongly agreed that there is a need to develop ethics guidelines for CRTs, and (70%; 95% CI: 63%-77%) that ethics committees could be better informed about distinct ethical issues surrounding CRTs. LIMITATIONS: Thirty-six percent of authors did not respond to the survey. Due to the absence of comparable results from a representative sample of authors of individually randomized trials, it is unclear to what extent the reported challenges result from the CRT design. CONCLUSIONS: CRT investigators are experiencing challenges in the research ethics review of their trials, including excessive delays, variability in process and outcome, and imposed requirements that can have negative consequences for study conduct. Investigators identified a clear need for ethics guidelines for CRTs and education of research ethics committees about distinct ethical issues in CRTs.

Provision of cancer information as a "support for navigating the knowledge landscape": findings from a critical interpretive literature synthesis.

PURPOSE OF THE RESEARCH: Information is often seen as a crucial tool for the support of cancer patients, facilitating their involvement in care management and in decision-making. The importance of theory in guiding provision of cancer information has been widely accepted, but there is a growing need for critical reflection on the concepts underlying approaches to information provision. This paper presents findings from a critical review of literature related to information in cancer care. METHODS: Critical interpretive synthesis (CIS) was employed to review and synthesise published literature. 57 publications were selected in a multi-step systematic process. Their content was analysed and synthesised using established methodology consistent with primary qualitative research. KEY RESULTS: The synthesis identified and characterised a concept of cancer information provision as a "support for navigating the knowledge landscape". This concept recognises the diverse, changing and relational nature of patients' values, needs and preferences. It promotes a view of information provision as an ongoing and flexible process of navigating different resources, which in turn support the navigation of patients' broader experiences of their health and care. This process recognises various levels of patient involvement with healthcare services, and ensures timely provision of selected and personally relevant information. CONCLUSION: The concept of "support for navigating the knowledge landscape" offers a useful way of envisaging information services for people with cancer (and possibly also with other chronic illnesses), which would be responsive to patients' needs and preferences.

Enabling mutual helping? Examining variable needs for facilitated peer support.

OBJECTIVE: To examine uses of peer support among people living with a urological cancer. METHODS: 26 qualitative interviews investigating experiences of needing and receiving information and support among people who had and who had not used a new urological cancer centre and its various peer support opportunities. RESULTS: Study participants reported varied needs for engagement with facilitated peer support, and suggested these depended on the severity and burden of their disease and treatment, the support they derived from existing networks, and their sense of coping. A minority reported avoiding speaking with other patients in order to protect their own or the other patients' emotional wellbeing. CONCLUSION: Desire for facilitated peer support is variable, and both giving and receiving support may have negative as well as positive consequences. These may depend on the nature of social comparisons that peer support interventions prompt, and the varying ways people interpret these. PRACTICAL IMPLICATIONS: Services offering facilitated peer support should recognise people's variable and contingent needs for support, and acknowledge the potential disadvantages of facilitated peer support for some patients.

'Avoiding harm to others' considerations in relation to parental measles, mumps and rubella (MMR) vaccination discussions - an analysis of an online chat forum.

Vaccination against contagious diseases is intended to benefit individuals and contribute to the eradication of such diseases from the population as a whole. The Measles, Mumps and Rubella (MMR) vaccine is widely recommended for all children with the aim of protecting against measles, mumps, and rubella. However, within the UK, there has been significant controversy surrounding its safety. This paper presents findings from a UK study of discussions about MMR in an online chat forum for parents. We observed archived discussions (without posting any messages) and conducted a thematic analysis to explore in more detail how participants discussed particular topics. Most participants were female, had young children, lived in the UK. They had reached a range of decisions regarding MMR vaccination. This analysis focuses on discussions about 'avoiding harm to others,' which were important considerations for many of the participating parents. In the context of concerns about MMR safety, participants expressed a desire to both (a) protect their own child and (b) help protect others by contributing to herd immunity. Parents made a distinction between healthy and vulnerable children which had important implications for their views about who should bear the burden of vaccination. Some parents were quite critical of those who did not vaccinate healthy children, and urged them to do so on grounds of social responsibility. Our findings suggest that social scientists with an interest in vaccination practice should attend carefully to lay understandings of herd immunity as a public good and views about obligations to others in society. Policy makers, too, might consider giving more emphasis to herd immunity in vaccination promotional material, although attention should be paid to the ways in which parents distinguish between healthy and vulnerable children.

Involvement in treatment decision-making: its meaning to people with diabetes and implications for conceptualisation.

Patient involvement in decision-making is widely regarded as an important feature of good-quality healthcare. Policy-makers have been particularly concerned to ensure that patients are informed about and enabled to choose between relevant treatment options, but it is not clear how patients understand and value involvement. We investigated the meaning of involvement in treatment decision-making for people with diabetes. We conducted semi-structured interviews with 18 people aged between 20 and 79 who had type 1 or type 2 diabetes selected from 4 multi-practitioner outpatient clinics in the Grampian area of Scotland. We used several strategies to probe their understandings of involvement, including a discussion of how they would respond to a question about involvement in treatment decisions that appears on the National Patient Survey used to monitor the quality of healthcare in England. Participants associated involvement in decision-making with a number of features relating to the ethos and feel of healthcare encounters (welcoming; respectful; facilitative of patients' contributions; and non-judgmental); communication about health problems (practitioners attending to patients' views and patients feeling listened to; practitioners giving clear explanations based on their professional knowledge and patients understanding these); and communication about treatments (practitioners explaining treatment rationales in ways that patients understand and enabling patients to feel they have a say). Our findings have implications for practical attempts to involve patients in decisions about their care and for the conceptualisation and assessment of patient involvement. They suggest that practitioners who aspire to facilitate patient involvement should attend to the ethos they foster in consultations and the way they discuss problems as well as to the provision of information about treatment options and the scope patients have to influence decisions. Models and taxonomies of patient involvement in decision-making need to be developed to accommodate both problem-solving phases and the relational and subjective dimensions of involvement.