Frances Rapport

The OPTION scale: measuring the extent that clinicians involve patients in decision-making tasks.

Objective  To examine the psychometric properties of a revised scale, named ‘observing patient involvement in decision making’ (OPTION), by analysing its reapplication to a sample of routine primary care consultations. The OPTION instrument assesses to what degree clinicians involve patients in decision making.

Using Focus Groups With Minority Ethnic Communities: Researching Infertility in British South Asian Communities

Little attention has been given to the specific methodological issues that can accompany the use of focus groups with minority ethnic communities in the United Kingdom. In this article, the authors discuss the use of this method in a study of the provision of infertility services to South Asian communities in three English cities. Focus groups are an invaluable research method for working in a diverse linguistic and cultural environment, providing interesting, rich, and complex data. However, their use can raise significant methodological and ethical challenges for researchers working with minority ethnic communities. The authors discuss key issues that arose in their exploration of ethnicity and infertility around language and cultural diversity, the role of community facilitators, access and recruitment, infertility as a “sensitive” topic, and reciprocity in research relations.

Cross-border reproductive care: A review of the literature.

Cross-border reproductive care (CBRC) has attracted considerable attention in media and professional publications. The aim of this review is to present a critical narrative overview of the published evidence on CBRC. A systematic search of key academic databases was undertaken with no time restrictions set for publication. This was supplemented by additional searches of key websites, reference chaining and enquiries to people working in the field. A total of 54 items are included in the review, including both empirical research studies (18) and debate papers (36). The key themes discussed are: terminology and definitions; incidence; experiences; explanations; implications; and policy responses. Significant methodological limitations and gaps in the literature are identified. Evidence on incidence is scant, though it suggests that CBRC is increasing. The literature suggests legal, social and political drivers, which vary in importance geographically and between individuals. Limited findings on patient perceptions suggest a broadly positive patient experience. Suggested policy responses include prohibition, regulatory harmonization and harm minimization. There is a need for better international data collection tools and both quantitative and qualitative work which encompasses views of patients, donors, surrogates and professionals and which explores the implications for healthcare services in sending countries.

Crossing borders for fertility treatment: motivations, destinations and outcomes of UK fertility travellers

BACKGROUND There are few systematic studies of the incidence of cross-border fertility care and even fewer reports of qualitative research with those undertaking treatment outside their country of origin. This paper reports findings from a qualitative study of UK residents with experience of cross-border care: the socio-demographic characteristics of UK travellers; their reasons for seeking treatment abroad; the treatments they sought; the destinations they chose and the outcomes of their treatment. METHODS Data regarding cross-border fertility treatment were collected from a purposive sample of 51 people by means of in-depth, semi-structured interviews between May 2009 and June 2010. Data were analysed using a systematic thematic coding method and also subjected to quantitative translation. RESULTS Patient motivations for travelling abroad are complex. A desire for timely and affordable treatment with donor gametes was evident in a high number of cases (71%). However, most people gave several reasons, including: the cost of UK treatment; higher success rates abroad; treatment in a less stressful environment and dissatisfaction with UK treatment. People travelled to 13 different countries, the most popular being Spain and the Czech Republic. Most organized their own treatment and travel. The mean age of women seeking treatment was 38.8 years (range 29-46 years) and the multiple pregnancy rate was 19%. CONCLUSIONS UK residents have diverse reasons for, and approaches to, seeking overseas treatment and do not conform to media stereotypes. Further research is needed to explore implications of cross-border treatment for donors, offspring and healthcare systems.

“Of the edgelands”: broadening the scope of qualitative methodology

In an editorial in a previous issue of this journal Rapport et al introduced the metaphor of the edgelands, arguing that the area between urban and rural landscapes serves to illustrate some of the difficulties of interdisciplinarity experienced by those who work in the medical humanities. In this paper the authors explore some specific issues of qualitative research methodology in health care research. The paper describes a broadening out of the scope of qualitative inquiry in social scientific research in health and social care. The paper explains why some new methodologies have emerged and how both old and new methodologies are grouped around three interlocking strands: narrative based, arts based, and redefined, methodology. In order to illustrate developments in this field, the authors present three examples of the use of these methodologies in practice: photo elicitation technique; discourse analytic, and interpretive anthropological, method. Finally the authors illustrate how these methodologies can give added value to health services research.

Recognising and responding to suicidal crisis within family and social networks: qualitative study

Objective To shed light on the difficulties faced by relatives, friends, and colleagues in interpreting signs of suicidality and deciding whether and how to intervene. Design Qualitative study of completed suicides, based on in-depth interviews with multiple informants. Setting London, southwest England, and south Wales. Participants 31 lay informants (one to five for each case), including parents, partners, siblings, friends, and colleagues of 14 cases of suicide in which the deceased was aged 18-34 and was not in contact with secondary mental health services. Results Informants described both intellectual and emotional barriers to awareness and intervention within the family and social network. They reported that signs and communications of distress were often oblique and difficult to interpret, that they may have disregarded warning signals and focused instead on positive signs, and that, even when they were aware that something was seriously wrong, taking any action at all involved considerable personal risks. Conclusions As the suicidal process unfolds, significant others are faced with a highly complex task. Their proximity to the suicidal person and their emotional investment in the relationship make it difficult for them to see what is happening, to say anything to the person or to other members of the network, or to seek help outside the network. Efforts to strengthen the capacity of lay people to play a role in preventing suicide are urgently needed and should be informed by a thorough understanding of these difficulties. They should highlight the ambiguous nature of warning signs and should focus on helping people to acknowledge and overcome their fears about intervening.

Should I stay or should I go?’ Deciding whether to go to hospital after a 999 call:

Objective In most UK ambulance services, crews attending someone who has phoned the emergency services on ‘999’ will take the patient to hospital, unless the patient makes the decision to stay at home (or wherever they happen to be when the ambulance arrives). Safety concerns have been raised about non-conveyance decisions. Weunder took a study of one UK Ambulance Service to examine ambulance crew members’ views on how decision-making about non-conveyance works in practice in relation to non-urgent calls. Methods A total of 25 paramedics took part in three focus groups. Focus groups were transcribed and analysed thematically. Results The ambulance services apparently straight forward guidance on decision-making about non-conveyance proved tricky in the messiness of the real world, for two reasons. The first was to do with the notion of the patients capacity to make decisions and how this was interpreted. The second was to do with the complexity of the decision-making process, in which the patient, the crew and, in many cases, family or carers often take part in negotiation and de facto joint decision-making. Conclusions There is a mismatch between policy and practice in relation to non-conveyance decisions. Findings should be built into research and service development in this rapidly changing field of practice in emergency and/or unscheduled care. The commonly accepted perspective on shared decision-making should be extended to include the context of ‘999’ ambulance calls.

New Qualitative Methodologies in Health and Social Care Research

Introduction: Shifting Sands in Qualitative Methodology 1. Discourse Analysis: Addressing the Communication Strategies of Healthcare Professionals 2. The Turn to a Narrative Knowing of Persons: Minimalist Passive Interviewing Technique and Team Analysis of Narrative Qualitative Data 3. Hermeneutics and Nursing Research 4. Descriptive Phenomenology: Lifeworld as Evidence 5. From the Porters Point of View: Participant-Observation by the Interpretive Anthropologist in the Hospital 6. Imagework Method and Potential Applications in Health 7. Post Modern Literary Poetics of Experience: A New Form of Aesthetic Enquiry 8. Historiography, Illness and the Interpretation of Fiction 9. Methodology and Practical Application of the Social Action Research Model

Multi-agency voices: A thematic analysis of multi-agency working practices within the setting of a Child and Adolescent Mental Health Service

This qualitative study aims to explore the types and purpose of discourse emerging when professionals from a Child and Adolescent Mental Health Service meet with professionals from other agencies to discuss cases. The aim reflects current political and contextual agendas influencing agencies to work more closely together and obstacles to achieving this goal highlighted in the literature such as the need for agencies to develop a common language to discuss children of concern. Data were collected through eight audio-taped meetings involving CAMHS and members of other agencies such as social services and education. A thematic analysis identified nine themes, defined according to their discourse type, including: single agency discourse; case complexity discourse and multi-agency discourse. Results indicate that agencies are hindered from working more closely together and developing a common language for use in multi-agency meetings, because they tend to have different understandings of the terminology used and a common consensus about language and meaning is not usually negotiated within the meeting. There is a need for greater awareness amongst staff from different professional groups and agencies that meaning given by one group will often need to be clarified by others and assumptions about common understandings should not be made.

Suicide communication events: Lay interpretation of the communication of suicidal ideation and intent

Previous research has shown that a majority of people communicate their suicidal ideas and intent prior to the act of suicide, but very little is known about the way in which these suicide communication events are interpreted by relatives, friends and significant others. A suicide communication event (SCE) is defined as a set of circumstances in which a person expresses suicidal feelings, thoughts, intentions or plans, either directly or indirectly, in interaction with other people in their social environment. In a qualitative study conducted in 2008-9 we collected narratives from people bereaved by suicide. Here we examine these narratives using an analytic framework derived from communication pragmatics and face-work theory. We analysed 14 cases of completed suicide drawn from coroners case files in London, Southwest England and South Wales. We found that the SCEs described were potentially face-threatening situations requiring face-saving strategies, which often resulted in off-record, indirect, ambiguous, humorous and euphemistic communications. Listeners frequently found it difficult to judge the meaning and intention of utterances referring to suicide. The outcome was often misunderstanding and closure of the communication, limiting the possibility of further support and referral for professional help. SCEs are important elements of the suicide process and we conclude that better understanding of how they occur and the challenges they pose for significant others may provide a basis for strengthening public involvement in suicide prevention. We draw our findings together in a model that could inform public awareness campaigns designed to improve the way people communicate with each other about suicide and distress.