Information for choice: what people need, prefer and use - Executive summary for the National Institute for Health Research Service Delivery and Organisation programme

First paragraph: Choice is at the heart of all Government health policies but is meaningless without information. Information is pivotal to people's experience of choice and self-management. To make optimal choices with confidence and to build on their existing self-management strategies people need the right information, at the right time, with the right support to use it. We already know that people want information but not necessarily for making choices and that people facing complex treatment choices often prefer decisions to be made on their behalf by a well-informed and trusted health professional. SDO 08/1710/153 was commissioned to understand the types of information that people take account of when making choices, the format of information that they prefer, and whether preferences vary systematically according to socio-economic status, ethnicity, gender and age

Information for choice: what people need, prefer and use - Report for the National Institute for Health Research Service Delivery and Organisation programme

First paragraph: Choice is at the heart of all Government health policies (1-5). The SDO's scoping review of the evidence on patient choice in the NHS, commissioned in 2004, suggested that: people want information but not necessarily for making choices; that people facing complex treatment choices often prefer decisions to be made on their behalf by a well-informed and trusted health professional; that wanting the option of choosing a distant hospital for non urgent care is limited to those situations where there is a long wait for a local hospital and there is a history of poor quality care; that wealthy and better educated people are likely to benefit most from choice; and that there is little evidence that giving people more choice will, in itself, improve quality of care (6). It is recognised that information is pivotal to people's experience of choice and self-management; to make optimal choices with confidence and to build on their existing self-management strategies people need the right information, at the right time with right support to use it (7). Lord Darzi's Next Stage Review (8) made it clear that the English NHS was to be focused as: "an NHS that gives patients and the public more information and choice, works in partnership and has quality of care at its heart" (page 7) (our emphasis). SDO 08/1710/153 was commissioned in 2005. The brief called for research to understand the types of information that people take account of when making choices, the format of information that they prefer, and whether preferences vary systematically according to socio-economic status, ethnicity, gender and age. In responding to this brief we focused on two key types of information: 'general facts' and 'personal experience' information. By 'general facts' we mean research-based information about health care interventions and the risks and outcomes associated with them; medical knowledge that reflects consensus based on what has been observed among many patients/people; and other information that is widely accepted to be both reasonably reliable and fairly broadly applicable (e.g. statements of legal requirement or policy). By 'personal experience' information we mean information about the experiences of particular individuals, as communicated by themselves or others

Depression at Work, Authenticity in Question: Experiencing, Concealing and Revealing

Australia and the UK have both introduced policies to protect employees who experience mental illness, including depression. However, a better understanding of the issues workers face (e.g. sense of moral failure) is needed for the provision of appropriate and beneficial support. We analysed 73 interviews from the UK and Australia where narratives of depression and work intersected. Participants encountered difficulties in being (and performing as if) ‘authentic’ at work, with depression contributing to confusions about the self. The diffuse post-1960s imperative to ‘be yourself’ is experienced in conflicting ways: While some participants sought support from managers and colleagues (e.g. sick leave, back to work plans), many others put on a façade in an attempt to perform the ‘well’ and ‘authentic’ employee. We outline the contradictory forces at play for participants when authenticity and visibility are expected, yet moral imperatives to be good (healthy) employees are normative

Using secondary analysis of qualitative data of patient experiences of health care to inform health services research and policy

Qualitative research is recognized as an important method for including patients’ voices and experiences in health services research and policy-making, yet the considerable potential to analyse existing qualitative data to inform health policy and practice has been little realized. This failure may partly be explained by: a lack of awareness amongst health policy makers of the increasing wealth of qualitative data available; and around 15 years of internal debates among qualitative researchers on the strengths, limitations and validity of re-use of qualitative data. Whilst acknowledging the challenges of qualitative secondary data analysis, we argue that there is a growing imperative to be pragmatic and to undertake analysis of existing qualitative data collections where they have the potential to contribute to health policy formulation. Time pressures are inherent in the policy-making process and in many circumstances it is not possible to seek funding, conduct and analyse new qualitative studies of patients’ experiences in time to inform a specific policy. The danger then is that the patient voice, and the experiences of relatives and carers, is either excluded or included in a way that is easily dismissed as ‘unrepresentative’. We argue that secondary analysis of qualitative data collections may sometimes be an effective means to enable patient experiences to inform policy decision-making

'My brain couldn’t move from planning a birth to planning a funeral': A qualitative study of parents’ experiences of decisions after ending a pregnancy for fetal abnormality

Background: With increasing technology for screening and diagnostic testing for fetal abnormality in pregnancy, many more pregnant women and couples are faced with the decision to terminate a pregnancy often after receiving diagnostic test results in the second or third trimester of pregnancy. Whilst there is extensive research on people's experience of diagnostic testing and decision-making, there has been less research on people's experiences of decisions they face immediately following their termination. Objectives: To describe the experiences of (often unanticipated) decisions that people face in the immediate aftermath of ending a pregnancy following diagnosis of serious fetal abnormality. Design: Secondary analysis of narrative qualitative interview data. Settings: Participants were recruited throughout the United Kingdom (UK) and interviewed between 2004 and 2006. Participants: 38 individual mothers, 10 individual fathers and 10 couples who ended a pregnancy following diagnosis of fetal abnormality. Results: Parents who had experienced the ending of a pregnancy following diagnosis of fetal abnormality described their experiences, and often distress, of facing painful decisions consequent upon their decision to terminate the pregnancy. What was striking from their accounts was their sense of being unprepared for these decisions. Often they suggested that they had received no information or forewarning of the ‘choices’ they would have to make, although information designed specifically for people in this situation is available in the UK. Conclusions: Many of the decisions that people face in the immediate aftermath of a termination for fetal abnormality are upsetting, and in some circumstances more so because they are not anticipated. Often parents report not receiving information which could be helpful until after these decisions have been made. Health professionals face difficult choices about what issues to raise with patients at this sensitive time, and the optimum time to inform patients of the extra decisions they will face. More research is needed on whether these decisions subsequent to a termination for fetal abnormality have long term implications for people's mental health and their ability to come to terms with their loss

‘I knew before I was told’: Breaches, cues and clues in the diagnostic assemblage

Diagnosis can be both a ‘diagnostic moment’, but also a process over time. This paper uses secondary analysis of narrative interviews on ovarian cancer, antenatal screening and motor neurone disease to explore how people relate assembling procedural, spatial and interactional evidence before the formal diagnostic moment. We offer the idea of a diagnostic assemblage to capture the ways in which individuals connect to and re-order signs and events that come to be associated with their bodies. Building on the empirical work of Poole and Lyne (2000) in the field of breast cancer diagnosis, we identify how patients describe being alerted to their diagnosis, either through ‘clues’ they report picking up (often inadvertently) or through ‘cues’, perceived as a more intentional prompt given by a health professional, or an organisational process. For patients, these clues frequently represent a breach in the expected order of their encounter with healthcare. Even seemingly mundane episodes or behaviours take on meanings which health professionals may not themselves anticipate. Our findings speak to an emergent body of work demonstrating that experiences of formal healthcare during the lead-up to diagnosis shape patients' expectations, degree of trust in professionals, and even health outcomes

"The old me could never have done that": how people give meaning to recovery following depression

Depression is usually a "self-limiting" condition, and recovery is likely, even if people do have subsequent episodes. However, despite considerable research into depression, little is known about how people actually go about understanding and organizing their recovery from depression. In this article, the authors draw on one-to-one interviews with people who have experienced mainly severe depression to explore the approaches and meanings attributed to overcoming depression. They used unstructured and semistructured interview phases to collect data and a modified grounded theory approach to analysis. They interviewed 38 men and women who had previously experienced depression (selected using the principles of maximum variation sampling through general practitioners, support groups, and newsletters) in late 2003 and early 2004. The authors explore the specific components involved in recovery (e.g., authenticity, responsibility, rewriting depression into the self), the stories people tell about their recovery, and the strategies deployed to revitalize life following depression. Reprinted by permission of Sage Publications Ltd from Ridge, Damien Thomas and Ziebland, Sue (2006, Qualitative Health Research, 16 (8). pp.1038-1053. Copyright 2006 SAGE Publications. All rights reserved. Not for commercial use or unauthorized distribution