Qualitative outcome assessment and research on chronic disease management in general practice : highlights from a keynote lecture, EGPRN May 2011, Nice

At its 2011 conference in Nice, France, the European General Practice Research Network (EGPRN), considered the issue of Relevant Outcome Measures in General Practice Research into Chronic Diseases. This paper, which is adapted from a keynote lecture given during that conference, considers the role of qualitative outcome assessments in research. Such assessments have a great deal in common with the patient-centred approach of general practice as they can capture the overall state of a patient rather than capturing only certain aspects. Research suggests that patients can be categorized, based on qualitative outcome assessment, and over time might change category. This approach to assessment brings to our attention alternative ways of considering the future: future as currently being made or future as predictable, at least to some extent. Although general practice needs the evidence from research that predicts the future, it also needs to engage in research that seeks to understand patients as they make their future, and to understand the impact of clinical interventions on this process

The nature of medical evidence and its inherent uncertainty for the clinical consultation : qualitative study

Objective To describe how clinicians deal with the uncertainty inherent in medical evidence in clinical consultations. Design Qualitative study. Setting Clinical consultations related to hormone replacement therapy, bone densitometry, and breast screening in seven general practices and three secondary care clinics in the UK NHS. Participants Women aged 45-64. Results 45 of the 109 relevant consultations included sufficient discussion for analysis. The consultations could be categorised into three groups: focus on certainty for now and this test, with slippage into general reassurance; a coherent account of the medical evidence for risks and benefits, but blurring of the uncertainty inherent in the evidence and giving an impression of certainty; and acknowledging the inherent uncertainty of the medical evidence and negotiating a provisional decision. Conclusion Strategies health professionals use to cope with the uncertainty inherent in medical evidence in clinical consultations include the use of provisional decisions that allow for changing priorities and circumstances over time, to avoid slippage into general reassurance from a particular test result, and to avoid the creation of a myth of certainty

Conveying troublesome concepts : using an open-space learning activity to teach mixed-methods research in the health sciences

In the past decade, there has been a groundswell of interest in the use of mixed-methods approaches to conduct research in the health sciences. However, there remains a paucity of diverse teaching materials, curricula and activities to support the continued expansion of education and innovation in mixed-methods research. Here, we report the development and evaluation of an open-space learning activity and tool to aid teaching the concept of synthesis in mixed-methods research. We detail the iterations of the teaching activity and tool as they were developed, we report student feedback, and we discuss the utility of the activity and tool for introducing the concept of synthesis in mixed-methods research within health science and related fields

Hormone replacement therapy: perspectives from women, medicine and sociology

Developed on the boundary between medicine and sociology, this thesis develops a critique of the perspectives of these disciplines through analysis of a study of women's perspectives on hormone replacement therapy. Women's perspectives are explored through a postal questionnaire survey and a study using individual interviews and focus groups. The survey results provide a measure of women’s attitudes towards, and knowledge of, hormone replacement therapy. The individual interviews detail the way women move towards a decision about the therapy and identifies common themes, particularly women's fears and what influences their fears. The focus groups explore contrasting themes including women's control and choice in decisions about therapy, contrary themes in women’s attitudes and the different ways of thinking used by the women. The results of the studies are assessed for their implications for clinical general practice. The thesis also takes a sociological perspective on women and HRT and on the research process, in particular exploring two themes. Firstly, the interaction between the social context, the research subject and the research process. This includes the social factors influencing the development of the research and choice of research methods, and the influence of the research methods on the results obtained. The second theme is the perspectives and levels of analysis used by the main disciplines contributing to the thesis; biomedicine, biostatistics, general practice and sociology. The thesis explores how the different perspectives and levels of analysis influence research and how they are used to manage the social context. These explorations are used to suggest future directions for research on hormone replacement therapy and for general practice

Why are health care interventions delivered over the internet? : a systematic review of the published literature

Background: As Internet use grows, health interventions are increasingly being delivered online. Pioneering researchers are using the networking potential of the Internet, and several of them have evaluated these interventions. Objective: The objective was to review the reasons why health interventions have been delivered on the Internet and to reflect on the work of the pioneers in this field in order to inform future research. Methods: We conducted a qualitative systematic review of peer-reviewed evaluations of health interventions delivered to a known client/patient group using networked features of the Internet. Papers were reviewed for the reasons given for using the Internet, and these reasons were categorized. Results: We included studies evaluating 28 interventions plus 9 interventions that were evaluated in pilot studies. The interventions were aimed at a range of health conditions. Reasons for Internet delivery included low cost and resource implications due to the nature of the technology; reducing cost and increasing convenience for users; reduction of health service costs; overcoming isolation of users; the need for timely information; stigma reduction; and increased user and supplier control of the intervention. A small number of studies gave the existence of Internet interventions as the only reason for undertaking an evaluation of this mode of delivery. Conclusions: One must remain alert for the unintended effects of Internet delivery of health interventions due to the potential for reinforcing the problems that the intervention was designed to help. Internet delivery overcomes isolation of time, mobility, and geography, but it may not be a substitute for face-to-face contact. Future evaluations need to incorporate the evaluation of cost, not only to the health service but also to users and their social networks. When researchers report the outcomes of Internet-delivered health care interventions, it is important that they clearly state why they chose to use the Internet, preferably backing up their decision with theoretical models and exploratory work. Evaluation of the effectiveness of a health care intervention delivered by the Internet needs to include comparison with more traditional modes of delivery to answer the following question: What are the added benefits or disadvantages of Internet use that are particular to this mode of delivery

Understanding the diversity and dynamics of living with diabetes : a feasibility study focusing on the case

Despite growing evidence about treatments, many people living with diabetes have poor diabetes control even when healthcare is available. One difficult issue is how to apply medical evidence to individuals. This feasibility study explores change over time and the diversity of pathways to similar health outcomes, to understand how evidence can be tailored to the individual. Six people living with diabetes (two with type 1, and four with type 2) agreed to a series of interviews and diary-keeping. Reading the dataset for each individual reveals a person changing over time through interactions with people and their context. Identifying time as a theme is difficult, as it is ubiquitous. Outcome means little to those living with diabetes: they are living on through time. We developed attributes for each participant relevant to diabetes outcome, describing how they related to others and their environment, capturing emergent properties rather than detail. A similar health outcome could be achieved very differently. Comparison of patterns of attributes may be useful. However, the dynamic, relational nature of the attributes is easily lost from view. How people function in terms of time, change and interaction may be most important for tailoring interventions for improved health outcome

Serialisation and the use of Twitter:Keeping the conversation alive in public policy scenario projects

Scenario planning projects have been used in a variety of organisational settings to explore future uncertainty. The scenario process is often a participative one involving heterogeneous stakeholder groups from multiple organisations, particularly when exploring issues of wider public concern. Facilitated workshops are a common setting for scenario projects, typically requiring people to be physically present in order to participate and engage with others for the duration of the project. During workshops, participants progress through the stages of the process, generating content relevant to each stage and ultimately the scenarios themselves. However, the periods between workshops and other episodes of activity (e.g. interviewing stakeholders) are rarely mentioned in such accounts. Thus we know very little about what activities take place between such activities, when they occur and who is involved. This is a particular issue for larger scale scenario projects that run over a period of weeks or months and involve multiple workshops; in such cases organisers and facilitators have to consider how to maintain the interest and levels of engagement of participants throughout the duration of the project. A variety of social media exist which allow people to interact with each other virtually, both in real time and asynchronously. We reflect on the use of social media within a project to develop scenarios for the future of the food system around Birmingham, UK, in the year 2050. We explore how a particular social media, namely Twitter, can be used effectively as part of a scenario planning project, for example to engage participants and encourage contributions to the project. We suggest that Twitter can support the serialisation of strategic conversations between the face-to-face workshops. The paper considers the implications of these reflections for both the scenario process and scenario projects more generally

Rigour and Rapport: a qualitative study of parents’ and professionals’ experiences of joint agency infant death investigation

Background: In many countries there are now detailed Child Death Review (CDR) processes following unexpected child deaths. CDR can lead to a fuller understanding of the causes for each child’s death but this potentially intrusive process may increase the distress of bereaved families. In England, a joint agency approach (JAA) is used where police, healthcare and social services investigate sudden child deaths together and a key part of this is the joint home visit (JHV) where specialist police and paediatricians visit the home with the parents to view the scene of death. This study aimed to learn of bereaved parents’ experiences of JAA investigation following Sudden Unexpected Death in Infancy (SUDI). Methods: This was a qualitative study of joint agency investigation of SUDI by specialist police, healthcare and social services including case note analysis, parental questionnaires, and in-depth interviews with parents and professionals. Families were recruited at the conclusion of the JAA. Data were analysed using a Framework Approach. Results: 21/113 eligible families and 26 professionals participated giving theoretical saturation of data. There was an inherent conflict for professionals trying to both investigate deaths thoroughly as well as support families. Bereaved parents appreciated the JAA especially for the information it provided about the cause of death but were frustrated with long delays waiting to obtain this. Many parents wanted more emotional support to be routinely provided. Most parents found the JHV helpful but a small minority of mothers found this intensely distressing. In comparison to JHVs, when police visited death scenes without paediatricians, information was missed and parents found these visits more upsetting. There were issues with uniformed non-specialist police traumatising parents by starting criminal investigations and preventing parents from accessing their home or collecting vital possessions. Conclusions: Overall most parents feel supported by professionals during the JAA; however there is scope for improvement. Paediatricians should ensure that parents are kept updated with the progress of the investigations. Some parents require more emotional support and professionals should assist them in accessing this

Parental understanding and self-blame following sudden infant death : a mixed-methods study of bereaved parents' and professionals' experiences

Objectives: Improvements in our understanding of the role of modifiable risk factors for sudden infant death syndrome (SIDS) mean that previous reassurance to parents that these deaths were unpreventable may no longer be appropriate. This study aimed to learn of bereaved parents' and healthcare professionals' experiences of understanding causes of death following detailed sudden unexpected death in infancy (SUDI) investigations. The research questions were: How do bereaved parents understand the cause of death and risk factors identified during detailed investigation following a sudden unexpected infant death? What is the association between bereaved parents' mental health and this understanding? What are healthcare professionals' experiences of sharing such information with families? Design: This was a mixed-methods study using a Framework Approach. Setting: Specialist paediatric services. Participants: Bereaved parents were recruited following detailed multiagency SUDI investigations; 21/113 eligible families and 27 professionals participated giving theoretical saturation of data. Data collection: We analysed case records from all agencies, interviewed professionals and invited parents to complete the Hospital Anxiety and Depression Scale (HADS) and questionnaires or in-depth interviews. Results: Nearly all bereaved parents were able to understand the cause of death and several SIDS parents had a good understanding of the relevant modifiable risk factors even when these related directly to their actions. Paediatricians worried that discussing risk factors with parents would result in parental self-blame and some deliberately avoided these discussions. Over half the families did not mention blame or blamed no one. The cause of death of the infants of these families varied. 3/21 mothers expressed overwhelming feelings of self-blame and had clinically significant scores on HADS. Conclusions: Bereaved parents want detailed information about their child’s death. Our study suggests parents want health professionals to explain the role of risk factors in SIDS. We found no evidence that sharing this information is a direct cause of parental self-blame

Family health narratives : midlife women’s concepts of vulnerability to illness

Perceptions of vulnerability to illness are strongly influenced by the salience given to personal experience of illness in the family. This article proposes that this salience is created through autobiographical narrative, both as individual life story and collectively shaped family history. The paper focuses on responses related to health in the family drawn from semi-structured interviews with women in a qualitative study exploring midlife women’s health. Uncertainty about the future was a major emergent theme. Most respondents were worried about a specified condition such as heart disease or breast cancer. Many women were uncertain about whether illness in the family was inherited. Some felt certain that illness in the family meant that they were more vulnerable to illness or that their relatives’ ageing would be mirrored in their own inevitable decline, while a few expressed cautious optimism about the future. In order to elucidate these responses, we focused on narratives in which family members’ appearance was discussed and compared to that of others in the family. The visualisation of both kinship and the effects of illness, led to strong similarities being seen as grounds for worry. This led to some women distancing themselves from the legacies of illness in their families. Women tended to look at the whole family as the context for their perceptions of vulnerability, developing complex patterns of resemblance or difference within their families