Combining ethnography and conversation analysis to explore interaction in dementia care settings.

BACKGROUND: It is well established that the actions and behaviour of care home workers are fundamental to the well-being of the people they care for. They not only deliver basic care but through their day-to-day presence provide an underlying continuity for residents, many of whom will have dementia or other cognitive problems. This can have many positive psychological and social benefits. A variety of ethnographic approaches have been used to explore the broader social and cultural dimensions of dementia care work. Similarly, there is a growing body of work applying micro-level approaches such as conversation analysis (CA) to describe the interactional mechanics of specific care skills. STRATEGY: We outline what ethnography and CA are, how they work as stand-alone methodologies and how they have been used in care work and dementia care settings. A working illustration is given of how the two approaches may be integrated. DISCUSSION: Dementia care workers occupy a uniquely tenuous sociopolitical and professional position within healthcare. If they are to progress to a more professional status there is a pressing need for standardized systems of training to be developed. As has been common practice in most other fully professionalized sectors of healthcare, this training needs to be backed up by an understanding of how effective care work is undertaken at the micro-level. For it to be practically relevant to care workers it also needs to have been informed by the wider social context in which it occurs. CONCLUSION: We argue that elements of ethnography and CA can be usefully combined to provide the fully contextualized micro-level descriptions of care work practice that will be needed if current moves towards the greater professionalization of care work are to continue. PATIENT OR PUBLIC CONTRIBUTION: The authors undertake a significant amount of Patient and Public Involvement and Engagement and study codesign with members of the public, care workers and people living with dementia. Our engagement work with care staff and family carers undertaken as part of a current National Institute for Health Research study exploring naturalistic care worker skills (see acknowledgements) has been particularly relevant in shaping this article.

The benefits of international volunteering in a low-resource setting: development of a core outcome set.

BACKGROUND: Qualitative narrative analysis and case studies form the majority of the current peer-reviewed literature about the benefits of professional volunteering or international placements for healthcare professionals. These often describe generalised outcomes that are difficult to define or have multiple meanings (such as 'communication skills' or 'leadership') and are therefore difficult to measure. However, there is an interest from employers, professional groups and individual volunteers in generating metrics for monitoring personal and professional development of volunteers and comparing different volunteering experiences in terms of their impact on the volunteers. In this paper, we describe two studies in which we (a) consolidated qualitative research and individual accounts into a core outcome set and (b) tested the core outcome set in a large group of global health stakeholders. METHOD: We conducted a systematic review and meta-synthesis of literature to extract outcomes of international placements and variables that may affect these outcomes. We presented these outcomes to 58 stakeholders in global health, employing a Delphi method to reach consensus about which were 'core' and which were likely to be developed through international volunteering. RESULTS: The systematic review of 55 papers generated 133 unique outcomes and 34 potential variables. One hundred fifty-six statements were then presented to the Delphi stakeholders, of which they agreed 116 were core to a wide variety of healthcare professional practice and likely to be developed through international experiences. The core outcomes (COs) were both negative and positive and included skills, knowledge, attitudes and outcomes for healthcare organisations. CONCLUSIONS: We summarised existing literature and stakeholder opinion into a core outcome set of 116 items that are core to healthcare professional practice and likely to be developed through international experiences. We identified, in the literature, a set of variables that could affect learning outcomes. The core outcome set will be used in a future study to develop a psychometric assessment tool.

Organisational barriers to the facilitation of overseas volunteering and training placements in the NHS.

BACKGROUND: Undertaking a period of voluntary work or a professional placement overseas has long been a feature of medical training in the UK. There are now a number of high profile National Health Service (NHS) initiatives aimed at increasing access to such opportunities for staff at all levels. We present findings from a qualitative study involving a range of NHS staff and other stakeholders which explored barriers to participation in these activities. METHODS: A grounded theory methodology was drawn upon to conduct thematic based analysis. Our data included in-depth, semi-structured interviews with a range of returned volunteers, non-volunteers and other stakeholders (n = 51) who were, or had been, employed by the NHS. RESULTS: There are significant barriers to placement and volunteering activity stemming from structural and organisational shortcomings within the NHS. Difficulties in filling clinical roles has a significant impact on the ability of staff to plan and undertake independent placements. There is currently no clearly defined pathway within the NHS by which the majority of grades can apply for, or organise, a period of overseas voluntary or professional placement activity. There were divergent views on the relevance and usefulness of overseas professional placements. CONCLUSIONS: We argue that in the context of current UK policy initiatives aimed at facilitating overseas volunteer and professional placement activity, urgent attention needs to be given to the structural and organisational framework within which such initiatives will be required to work.

Are parents and professionals making shared decisions about a child's care on presentation of a suspected shunt malfunction: a mixed method study?

BACKGROUND: Shunts, the main treatment for hydrocephalus, are problematic as they frequently malfunction. Identifying shunt malfunction requires parents to recognize its symptoms and health professionals to integrate parents' information about the child's symptoms within the clinical assessment to reach a diagnosis. AIM: To investigate parent-professional shared decision making during the diagnosis of suspected shunt malfunction in acute hospital admissions. DESIGN AND METHODS: A mixed method study involving audio recordings of admission consultations, a shared decision making questionnaire and interviews 1-week post-consultation, was undertaken. Twenty-eight family members and fourteen health professionals participated. The interactions were analysed using conversational analysis, framework approach for the interview data and descriptive statistics for questionnaire responses. FINDINGS: Both parents and professionals focussed on establishing a diagnosis and ruling out shunt malfunction when a child with hydrocephalus was ill. Participants' perceived effective collaboration as central to this task: parents wanted to contribute to the process of diagnosis by providing information about the likely cause of symptoms. Professionals were satisfied with the level of involvement by parents, although parent satisfaction was more variable. The challenge for professionals was to integrate parents' expertise of their child's presenting symptoms within clinical decision making processes. CONCLUSION: In this context, both parents' and professionals' perceived their interactions to be about problem-solving, rather than making decisions about treatments. Although the shared decision-making model can help patients to make better decisions between treatment options, it is unclear how best to support collaboration between professionals and parents to ensure a good problem-solving process.

The mediation of social influences on smoking cessation and awareness of the early signs of lung cancer.

BACKGROUND: Whilst there has been no clear consensus on the potential for earlier diagnosis of lung cancer, recent research has suggested that the time between symptom onset and consultation can be long enough to plausibly affect prognosis. In this article, we present findings from a qualitative study involving in-depth interviews with patients who had been diagnosed with lung cancer (n = 11), and people who were at heightened risk of developing the disease (n = 14). METHODS: A grounded theory methodology was drawn upon to conduct thematic and narrative based approaches to analysis. RESULTS: The paper focuses on three main themes which emerged from the study: i) fatalism and resignation in pathways to help-seeking and the process of diagnosis; ii) Awareness of smoking risk and response to cessation information and advice. iii) The role of social and other networks on help-seeking. Key findings included: poor awareness among participants of the symptoms of lung cancer; ambivalence about the dangers of smoking; the perception of lung cancer as part of a homogenisation of multiple illnesses; close social networks as a key trigger in help-seeking. CONCLUSIONS: We suggest that future smoking cessation and lung cancer awareness campaigns could usefully capitalise on the influence of close social networks, and would benefit from taking a 'softer' approach.

Understanding interaction in problematic dementia and social care encounters: Protocol for a micro-level study combining video-ethnography and Conversation Analysis (CA).

INTRODUCTION: It is well established that the actions and behaviour of dementia care workers are fundamental to the wellbeing of the people they care for. Not only do they deal with basic healthcare needs, but they also perform a vital psycho-social function by providing-through their regular presence-an underlying continuity for residents. This has been shown to improve well-being, particularly for those in the advanced stages of dementia. It has also been suggested that there are additional psycho-social benefits of such contact which can directly influence the need for anti-psychotic medication. However, unlike most other healthcare and medical settings, the specialised and often difficult interactions that dementia care workers handle every day have not yet been the subject of detailed micro-level analysis. This is particularly significant because much of the impact that care-workers have relates to the way in which they interact with the people they care for. Not having a clear understanding of how their interactions 'work' at the micro-level-particularly ones that are specific to dementia care settings, and that care workers report to be difficult or challenging-means that any training interventions that are developed may not resonate with their real-world experience, and ultimately run the risk of failing. This video-based observational study aims to provide a detailed micro-exploration of problematic and challenging interactions involving care-workers and people living with dementia. SETTING AND METHODS: The study is based in the UK and will involve up to 20 dementia care staff and 60 people living with dementia. Fieldwork will be conducted in 5 dementia care home and community-based dementia day care settings using naturalistic observational methods (primarily video-ethnography). Data will be analysed using Conversation Analysis (CA).

The role of health care assistants in supporting district nurses and family carers to deliver palliative care at home: findings from an evaluation project.

AIMS AND OBJECTIVES: To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community. BACKGROUND: In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nursing services and family carers. In response to this, the Complex and Palliative Continuing Care Service employing generic health and personal care assistants was developed as part of the Marie Curie Delivering Choice Programme in one city in the UK. This paper draws on findings from an independent evaluation of the scheme. DESIGN: The wider evaluation used a formative evaluation methodology. METHOD: This paper draws on in-depth interviews with a range of stakeholders (n = 17), in-depth interviews with bereaved carers (n = 6) and an analysis of documentation. RESULTS: Stakeholders and bereaved carers perceived that the health and personal care assistants made a vital contribution to community palliative care. Careful recruitment, specific training, case management by district nursing with allocation of specific tasks and close ongoing communication were key features which stakeholders indentified. Family carers welcomed the way assistants developed relationships and became familiar and able to meet the care needs of patients. There were some problems reported which related to capacity, work flow and the need for extensive written care plans. CONCLUSION: Employing health care assistants under the supervision of district nurses appears to support patients and family at home during end of life care and contribute to good quality nursing care. RELEVANCE TO CLINICAL PRACTICE: The needs for community-based palliative and end of life care will increase rapidly over the course of the next 20 years, placing pressure on community nursing services and family carers.

Experiences of pregnant mothers using a social media based antenatal support service during the COVID-19 lockdown in the UK: findings from a user survey.

OBJECTIVES: The COVID-19 pandemic has seen unprecedented restrictions on face-to-face healthcare encounters. This has led to an increase in the use of online healthcare resources by service users. Pregnant women have always been a group particularly motivated to seek out information online. The objective of this study was to explore the experiences of mothers who were using an existing National Health Service social media based antenatal support service during the early stages of the UK COVID-19 lockdown. DESIGN: A short online survey with four closed questions (scale response) and one open-ended free-text question was given to pregnant women who were using the online service 3 weeks after the start of the UK lockdown. Descriptive statistics are used to present the closed question data. Thematic analysis was applied to the free-text responses. RESULTS: 320 women were sent the survey. 156 completed it (49% response rate). Participants provided information relating to frequency of use, information access, relative level of antenatal care and ease of contact. 105 (66%) participants completed the open-ended free-text question. Key themes to emerge related to: (1) information provision and verification; (2) managing and reducing feelings of isolation; (3) service specific issues, including crisis adaptations; and (4) impact on routine care. CONCLUSIONS: The study suggests that that pregnant mothers found a social media based approach well positioned to provide antenatal care and support during the COVID-19 pandemic.

Midwife-moderated social media groups as a validated information source for women during pregnancy.

BACKGROUND: Widespread use of the internet has fundamentally altered the way people access health information and communicate with health providers. Pregnant women are a group who are particularly highly motivated to seek out information online. However, where mothers actually obtain their information, who they trust to supply it, and whether or not it actually fulfils their needs is often unclear. This paper examines the experiences of women accessing advice and information on pregnancy and childbirth through a dedicated social-media platform, mediated by qualified midwives. The study formed part of a larger research project that focussed on professionally moderated online learning in maternity care, and the role of online communities. This paper reports on aspects of midwife mediated information provision in the context of these online communities. METHODS: Two secret (i.e. private / invitation only) Facebook groups were created. Both groups were moderated by 2 qualified midwives. One group had 17 mothers and the other 14 mothers. Both groups ran for 35 weeks. DATA AND ANALYSIS: The data included the written and spoken words of group participants and midwife-moderators in i) face-to-face (n = 4) and online (n = 4) post-intervention focus groups; ii) one-to-one interviews with group participants and midwife moderators (n = 24); iii) the complete corpus of text-based interaction across both groups; iv) a sub-set of private message sessions (n = 24) between individual participants and midwife-moderators. Thematic analysis was applied to the combined dataset. FINDINGS: Participants found engagement with midwives and other pregnant women via a social media group convenient and accessible. The groups provided a safe space for the sharing and validation of maternity relevant information. Members trusted their midwife-moderators to ensure information was reliable. For many members, the group became the primary source of pregnancy related information. CONCLUSION: Midwife-mediated social media groups offer a highly effective way of providing individualised information provision and social support for pregnant woman. Access to a group can also significantly impact on perceptions of relational continuity.

Cancer pain management at home (I): do older patients experience less effective management than younger patients?

GOALS OF WORK: We wanted to examine whether older cancer patients living at home experienced poorer pain management than younger patients, and if so, what were the potential explanations for this. MATERIALS AND METHODS: We interviewed 90 new referrals to community palliative care services who were aged 75 years and above or aged 60 years and below. We asked about pain intensity, pain relief and pain quality, access to and type of analgesic medication and, finally, sources of support and self-management strategies. MAIN RESULTS: Older and younger cancer patients who were living at home had very similar experiences of pain, pain relief, access to and use of analgesia, contact with health care professionals and use of additional pain management strategies. As a whole, participants had more frequent contact with family members, community nurses and pharmacists than with general practitioners. CONCLUSIONS: In this sample, the experience and management of pain in older cancer patients was no different from that in younger patients. This suggests that delivering improvements in cancer pain management in the community is appropriate for all age groups. In addition, focussing efforts on patients, carers and non-medical health care professionals may prove to be the most successful strategy.

Hidden dimensions: the analysis of interaction in nurse-patient encounters.

BACKGROUND: It is well established that the success of much healthcare provision is strongly linked to the quality of interaction that occurs between healthcare professionals and patients. Nurse-led consultations are becoming ever more common in primary care, and patient satisfaction with this type of clinical encounter is reportedly high. While many fields of health care have been the subject of detailed interactional and socio-linguistic analysis, nurse-patient encounters are currently under-represented. OBJECTIVE: This article will outline how one particular socio-linguistic approach - conversation analysis (CA) - can be applied to the investigation of nurse-led consultations. It will illustrate how the unique perspective that this method offers can reveal aspects of behaviour that would otherwise be inaccessible, and discusses the practical implications that a greater understanding of these behaviours can have for improving quality of care. STRATEGY: The CA method is illustrated through the presentation and analysis of data collected as part of a recent study into nurse/patient interaction in a specialist wound dressing clinic. The sequential and treatment-related consequences of a simple interactional misalignment during the initial stages of a consultation are explored, and used to demonstrate how such misalignments can impact on treatment processes.

Understanding the needs and experiences of people with young onset dementia: a qualitative study.

AIM: Despite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them. SETTING: Participants' homes, support group premises or university rooms. PARTICIPANTS: 14 people with a diagnosis of YOD from a northern UK city. DESIGN: Semistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis. RESULTS: Four superordinate themes are reported on 'process of diagnosis', 'the impact of living YOD', 'needs of people with YOD' and 'living well with YOD'. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks. CONCLUSIONS: People who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.

Volunteering and overseas placements in the NHS: a survey of current activity.

OBJECTIVE: The study aimed to establish current levels of overseas volunteering and placement activity across all staff grades within the National Health Service (NHS) in the North West of England. DESIGN: Cross-sectional survey. INSTRUMENT: Descriptive statistics. SETTING: 4 main regional hospitals in the North West of England, and additional NHS staff training events. PARTICIPANTS: Convenience sample of NHS staff (n=911). RESULTS: 911 NHS staff took part in the survey. The medical and dental staff group returned the highest number of responses (32.1%). 42% of staff reported some form of overseas volunteering or placement experience. Most staff took an international placement as students (33.6% men; 40.6% women). Medium-term placements were undertaken by 46.7% of men, and 52.5% of women. Settlement stays (ie, over 1 year) were reported by 7.6% men, and 8.3% women). The majority of respondents engaged in international placement were from the age groups incorporating 'below 25' to '41-50' (74%). Multiple placement experiences were uncommon: 2.5% of respondents reported three periods of overseas activity, and 1.5% reported four. All those with multiple placement experience came from the staff groups incorporating midwife/nurse/health visitor, and medical and dental. CONCLUSIONS: This survey captured a snapshot of current levels of volunteering and overseas placement activity across NHS staff grades in the North West. Owing to relatively homogenous organisational structures, findings are likely to broadly represent the position across the organisation as a whole. Although some degree of overseas placement activity is undertaken by a relatively high proportion of NHS staff, such activity is currently heavily skewed towards higher clinical staff grades. Significant numbers of allied health professionals and equivalent non-clinical cadres also report overseas experience, and we anticipate that the numbers will continue to rise if current policy initiatives gain momentum.

Toward an understanding of decision making on complementary and alternative medicine use in poorer countries: the case of cancer care in Pakistan.

During the past 2 decades, the study of complementary and alternative medicine (CAM) in general, and the sociological study of CAM in particular, have developed apace in richer countries. In addition to data on use levels and the nature of provision, there is now increasing research on issues such as motivation for use, decision-making processes, and so on. The integration of nonorthodox therapies into cancer care has been an important focus for such work. However, this interest has yet to be matched by work in poorer countries. While the nature of traditional medicine (TM) has long been of interest to anthropologists, the new context (marked by the globalized nature of CAMs existing alongside TM and allopathic treatment) has yet to be examined in any depth. In this article, the authors discuss the structural and cultural context of the first sociological research to be conducted into the role ofCAMandTMin cancer care in Pakistan. They identify some potentially important processes (ie, those identified in the limited existing literature and in anecdotal commentary), which are being tested by the new empirical study. The specific foci of the work are outlined. It is argued that research in poorer countries is essential both to ensure that an existing academic imbalance is addressed and to underpin more informed policy making in complex medically pluralistic (poorer) countries.

Patient assessment of effectiveness and satisfaction with traditional medicine, globalized complementary and alternative medicines, and allopathic medicines for cancer in Pakistan.

BACKGROUND: Virtually no research has been conducted on patient assessments of traditional medicines and allopathic medicines for cancer care in poorer countries marked by pluralistic medical environments. Pakistan represents an excellent case for such a study because of the coexistence of culturally and historically specific indigenous traditional medicine, the strong presence of allopathic medicine, and, to a lesser extent, the availability of some globalized complementary and alternative medicines. AIM: To gain a preliminary understanding of cancer patients' perceptions of effectiveness and satisfaction with traditional medicine, globalized complementary and alternative medicine, and allopathy in the context of a pluralistic medical environment. STUDY DESIGN: Structured survey of 362 cancer patients, from diverse regions in the Punjab province and Northwest Frontier province, who were being treated in 4 different hospitals in Lahore, Pakistan. RESULTS: Use of traditional medicine remains high among cancer patients, with traditional healers used by the majority of those surveyed. Although patients' perceptions of the overall effectiveness of traditional medicines for treating cancer are low, those patients who do use traditional medicines still have high levels of satisfaction with these modalities. This is distinct from levels of satisfaction with, and perceptions of effectiveness of, Western cancer treatments, which were synonymous in this group of patients. Important differences in patient perceptions were found within groups (eg, between different forms of traditional healers) as well as between them. CONCLUSION: This study showed considerable support for complementary and alternative medicine/traditional medicine but also significant variation in usage of and perceptions of local traditional medicines. More research needs to be done to explore the social processes underlying this variation in cancer patients' preferences for particular traditional medicines.

Use of traditional, complementary and allopathic medicines in Pakistan by cancer patients.

INTRODUCTION: The healthcare systems of developing countries are complex in that they often accommodate a range of disparate and often competing paradigms of care. This is the case in Pakistan where Indigenous traditional medicine (TM) co-exists with Western allopathic medicine and, in theory at least, with 'globalised' complementary and alternative medicines (CAM). To date we know little about what treatments are being chosen and why in this still predominantly rural country. AIM: To gain a preliminary understanding of patterns of usage of traditional medicine and globalised complementary and alternative medicine by cancer patients in Pakistan. METHOD: Structured survey of 362 cancer patients, from diverse regions in the Punjab and North-west Frontier Province provinces, who were being treated in four different hospitals in Lahore, Pakistan. RESULTS: Use of traditional medicine is high amongst cancer patients, with many patients using a combination of different therapeutic modalities. Unlike studies in Western contexts, this study indicated no relationship between cancer type or sex and use of CAM/TM. However level of education was influential in determining usage of particular TM. There is, however, no uniformity in patterns of use of different TM. CONCLUSION: There is less differentiation between social groups in usage of CAM and TM in Pakistan than has been reported in studies of western cancer patients. Differing levels of use for specific TM highlight the need to get beyond monolithic categorizations (such as TM) to understand use patterns for specific indigenous practices (in their social and cultural context).

Conversation analysis.

Conversation analysis (CA) is well established as a means of exploring the interactional detail of conventional healthcare encounters. It is also becoming increasingly popular in action to CAM. This article outlines the main features of CA, how it can be used in a CAM context, and the type of information it can be expected to reveal. Examples of original CA data obtained from CAM consultations are presented to illustrate the CA method.

Conversation analysis as a method for investigating interaction in care home environments.

This article gives an outline of how the socio-linguistic approach of conversation analysis can be applied to the analysis of carer-patient interaction in care homes. A single case study from a routine encounter in a residential care home is presented. This is used to show how the conversation analysis method works, the kinds of interactional and communication features it can expose, and what specific contribution this kind of micro-interactional approach may make to improving quality of care in these environments.

How potentially serious symptom changes are talked about and managed in COPD clinical review consultations: a micro-analysis.

People with Chronic Obstructive Pulmonary Disease (COPD) are at heightened risk of developing lung cancer. Recent research has suggested that in people who have the disease, the time between symptom onset and consultation can be long enough to significantly affect prognosis. The regular and routine clinical encounters that people with COPD engage in provide an opportunity for them to highlight new symptoms of concern, and for clinicians to be watchful for new symptomatic indicators. We present a micro-analysis of naturalistic data from a corpus of such encounters with the aim of exploring the interactional factors within these routine consultations which influence when and how new symptoms of concern are raised. Our hypothesis is that although the underlying aim of the review consultation is the same in both settings, the different consultation structures oriented to by nurses and GPs have a tangible effect on how new and concerning symptomatic information is introduced. Conversation analysis (CA) was used to examine 39 naturalistic review consultation recordings in two clinical settings; GP led (n = 16), and practice nurse led (n = 23). We describe three interactional formats by which patients chose to present new symptomatic concerns; 'direct', 'embedded', and 'oblique'. Both settings provided interactional 'slots' for patients to offer new and concerning symptomatic information. However, the structure of nurse led encounters tended to limit opportunities for patients to develop extended symptom narratives which in turn facilitated 'oblique' formats. We suggest that the attenuation of the 'oblique' format in this particular clinical setting has implications relating to the psycho-social idiosyncrasies of lung cancer and the maintenance of interactional conditions that encourage patients to disclose new symptomatic concerns.