Alicia O’Cathain

Quality of life of people with mental health problems: a synthesis of qualitative research

PurposeTo identify the domains of quality of life important to people with mental health problems.MethodA systematic review of qualitative research undertaken with people with mental health problems using a framework synthesis.ResultsWe identified six domains: well-being and ill-being; control, autonomy and choice; self-perception; belonging; activity; and hope and hopelessness. Firstly, symptoms or ‘ill-being’ were an intrinsic aspect of quality of life for people with severe mental health problems. Additionally, a good quality of life was characterised by the feeling of being in control (particularly of distressing symptoms), autonomy and choice; a positive self-image; a sense of belonging; engagement in meaningful and enjoyable activities; and feelings of hope and optimism. Conversely, a poor quality life, often experienced by those with severe mental health difficulties, was characterized by feelings of distress; lack of control, choice and autonomy; low self-esteem and confidence; a sense of not being part of society; diminished activity; and a sense of hopelessness and demoralization.ConclusionsGeneric measures fail to address the complexity of quality of life measurement and the broad range of domains important to people with mental health problems.

A systematic review, psychometric analysis and qualitative assessment of generic preference-based measures of health in mental health populations and the estimation of mapping functions from widely used specific measures

BACKGROUND Generic preference-based measures of health like the EQ-5D and SF-6D(®) are increasingly being used in economic evaluation and outcome assessment. However, there are concerns as to whether or not these generic measures are appropriate for use in people with mental health problems. OBJECTIVES The EQ-5D and SF-36(®) (including its derivatives the SF-12(®) and SF-6D) were assessed using the psychometric criteria of validity and responsiveness using quantitative and qualitative methods. Another aim was to estimate mapping functions between the EQ-5D and SF-6D and condition-specific measures, where appropriate. DESIGN Four studies were undertaken to examine the appropriateness of the measures: (1) a systematic review of quantitative evidence on validity and responsiveness; (2) a further quantitative assessment of these criteria using existing data sets; (3) a review of qualitative research on the quality of life of people with mental health problems; and (4) qualitative semistructured interviews of people with a full range of problems. A fifth study estimated mapping functions between mental health-specific measures and the EQ-5D and SF-6D. SETTING A choice of venue was offered for the interviews including the participants own home, a room at the university or a centre frequently used by mental health services. PARTICIPANTS The interviews were undertaken with 19 people with a broad range of mental health problems at varying levels of severity. MAIN OUTCOME MEASURES The reviews included the EQ-5D and SF-36 (and the SF-12 and SF-6D). The psychometric analysis included the Hospital Anxiety and Depression Scale (HADS), Clinical Outcomes in Routine Evaluation - Outcome Measure (CORE-OM), Generalised Anxiety Disorder Assessment (GAD-7), General Health Questionnaire (GHQ-12) and Patient Health Questionnaire (PHQ-9). RESULTS (1) and (2) The EQ-5D and SF-36 achieved an adequate level of performance in depression, and to some extent in anxiety and personality disorder. Results from the psychometric analyses in schizophrenia and bipolar disorder have been more mixed. (3) A framework analysis of 13 studies identified six major themes. (4) The interview data fitted the themes from the review well and resulted in minor modifications to the themes. The final set of themes comprised: well-being and ill-being; control, autonomy and choice; self-perception; belonging; activity; hope and hopelessness; and physical health. CONCLUSIONS The EQ-5D and SF-36 achieved mixed results in the quantitative testing against psychometric criteria. The qualitative analysis suggests this is because they provide a very limited coverage of themes identified by people with mental health problems. Recommendations for future work include the development of new preference-based measures in mental health that are based on, or substantially revise, an existing measure. FUNDING The Medical Research Council.

Mixed Methods in Biomedical and Health Services Research

Mixed-methods studies, in which qualitative1 and quantitative methods are combined in a single program of inquiry,2 are increasingly common and can be valuable in biomedical and health services research, in which the complementary strengths of each approach can characterize complex phenomena more fully than either approach alone.3,4 To effectively address complex problems in health and healthcare delivery, including heterogeneous and dynamic systems of care, a multilevel approach is needed to capture the perspectives of patients, providers, and organizations. Mixed methods offer enhanced capabilities to this end. Consequently, interest in mixed-methods studies is growing among funders, as evidenced by recent calls for proposals using these methods from the National Institutes of Health (NIH),5 the Agency for Healthcare Research and Quality,6 and independent research organizations (eg, Patient Centered Outcomes Research Institute)7 and foundations (eg, The Robert Wood Johnson Foundation).8 Training in mixed methods is also sponsored by NIH,9 the Agency for Healthcare Research and Quality,10 and professional associations.11 Nevertheless, written guidance on how to conduct rigorous mixed-methods research is not readily available to the general readership of peer-reviewed biomedical and health services journals, a group who may be less familiar with this approach. Accordingly, in this article, we describe applications of mixed methods in biomedical and health services research and provide a concise overview of key principles to facilitate best practices. First, we define mixed-methods approaches and present illustrations from published literature, including cardiovascular care. Second, we summarize standards for the design and conduct of rigorous mixed-methods studies. Third, we highlight 4 central considerations for investigators interested in using these methods. Mixed methods can be useful in the pursuit of a broad range of focal topics and study aims in the biomedical and health services research arenas, including, but not …

NHS Direct and nurses--opportunity or monotony?

NHS Direct, the 24-hour telephone helpline providing information and advice about health problems, is available throughout England and Wales. It was envisaged as a nurse-led service presenting a new opportunity for the nursing profession. Free text comments from a postal survey of NHS Direct nurses revealed that a large proportion of nurses were happy with working in NHS Direct, and that it presented some nurses with the opportunity of a new and challenging role. However, a minority found the work monotonous and felt that NHS Direct is likely to face the challenge of staff retention.

The Role of Group Dynamics in Mixed Methods Health Sciences Research Teams

This article explores the group dynamics of mixed methods health sciences research teams. The authors conceptualize mixed methods research teams as “representational groups,” in which members bring both their organizational and professional groups (e.g., organizational affiliations, methodological expertise) and their identity groups, such as gender or race, to the work of research. Although diversity and complementarity are intrinsic to mixed methods teams, these qualities also present particular challenges. Such challenges include (a) dealing with differences, (b) trusting the “other,” (c) creating a meaningful group, (d) handling essential conflicts and tensions, and (e) enacting effective leadership roles. The authors describe these challenges and, drawing from intergroup relations theory, propose guiding principles that may be useful to mixed methods health sciences research teams.

The appropriateness of, and compliance with, telephone triage decisions: a systematic review and narrative synthesis

AIM This paper is a report of the synthesis of evidence on the appropriateness of, and compliance with, telephone triage decisions. BACKGROUND Telephone triage plays an important role in managing demand for health care. Important questions are whether triage decisions are appropriate and patients comply with them. DATA SOURCES CINAHL, Cochrane Clinical Trials Database, Medline, Embase, Web of Science, and Psyc Info were searched between 1980-June 2010. DESIGN LITERATURE REVIEW Rapid Evidence Synthesis. REVIEW METHODS The principles of rapid evidence assessment were followed. RESULTS We identified 54 relevant papers: 26 papers reported appropriateness of triage decision, 26 papers reported compliance with triage decision, and 2 papers reported both. Nurses triaged calls in most of the studies (n=49). Triage decisions rated as appropriate varied between 44-98% and compliance ranged from 56-98%. Variation could not be explained by type of service or method of assessing appropriateness. However, inconsistent definitions of appropriateness may explain some variation. Triage decisions to contact primary care may have lower compliance than decisions to contact emergency services or self care. CONCLUSION Telephone triage services can offer appropriate decisions and decisions that callers comply with. However, the association between the appropriateness of a decision and subsequent compliance requires further investigation and further consideration needs to be given to the minority of calls which are inappropriately managed. We suggest that a definition of appropriateness incorporating both accuracy and adequacy of triage decision should be encouraged.

Assessing the implementability of telehealth interventions for self-management support: a realist review

BackgroundThere is a substantial and continually growing literature on the effectiveness and implementation of discrete telehealth interventions for health condition management. However, it is difficult to predict which technologies are likely to work and be used in practice. In this context, identifying the core mechanisms associated with successful telehealth implementation is relevant to consolidating the likely elements for ensuring a priori optimal design and deployment of telehealth interventions for supporting patients with long-term conditions (LTCs).MethodsWe adopted a two-stage realist synthesis approach to identify the core mechanisms underpinning telehealth interventions. In the second stage of the review, we tested inductively and refined our understanding of the mechanisms. We reviewed qualitative papers focused on COPD, heart failure, diabetes, and behaviours and complications associated with these conditions. The review included 15 papers published 2009 to 2014.ResultsThree concepts were identified, which suggested how telehealth worked to engage and support health-related work. Whether or not and how a telehealth intervention enables or limits the possibility for relationships with professionals and/or peers. Telehealth has the potential to reshape and extend existing relationships, acting as a partial substitute for the role of health professionals. The second concept is fit: successful telehealth interventions are those that can be well integrated into everyday life and health care routines and the need to be easy to use, compatible with patients’ existing environment, skills, and capacity, and that do not significantly disrupt patients’ lives and routines. The third concept is visibility: visualisation of symptoms and feedback has the capacity to improve knowledge, motivation, and a sense of empowerment; engage network members; and reinforce positive behaviour change, prompts for action and surveillance.ConclusionsUpfront consideration should be given to the mechanisms that are most likely to ensure the successful development and implementation of telehealth interventions. These include considerations about whether and how the telehealth intervention enables or limits the possibility for relationships with professionals and peers, how it fits with existing environment and capacities to self-manage, and visibility-enabling-enhanced awareness to self and others.

Getting added value from using qualitative research with randomized controlled trials: a qualitative interview study

BackgroundQualitative research is undertaken with randomized controlled trials of health interventions. Our aim was to explore the perceptions of researchers with experience of this endeavour to understand the added value of qualitative research to the trial in practice.MethodsA telephone semi-structured interview study with 18 researchers with experience of undertaking the trial and/or the qualitative research.ResultsInterviewees described the added value of qualitative research for the trial, explaining how it solved problems at the pretrial stage, explained findings, and helped to increase the utility of the evidence generated by the trial. From the interviews, we identified three models of relationship of the qualitative research to the trial. In ‘the peripheral’ model, the trial was an opportunity to undertake qualitative research, with no intention that it would add value to the trial. In ‘the add-on’ model, the qualitative researcher understood the potential value of the qualitative research but it was viewed as a separate and complementary endeavour by the trial lead investigator and wider team. Interviewees described how this could limit the value of the qualitative research to the trial. Finally ‘the integral’ model played out in two ways. In ‘integral-in-theory’ studies, the lead investigator viewed the qualitative research as essential to the trial. However, in practice the qualitative research was under-resourced relative to the trial, potentially limiting its ability to add value to the trial. In ‘integral-in-practice’ studies, interviewees described how the qualitative research was planned from the beginning of the study, senior qualitative expertise was on the team from beginning to end, and staff and time were dedicated to the qualitative research. In these studies interviewees described the qualitative research adding value to the trial although this value was not necessarily visible beyond the original research team due to the challenges of publishing this research.ConclusionsHealth researchers combining qualitative research and trials viewed this practice as strengthening evaluative research. Teams viewing the qualitative research as essential to the trial, and resourcing it in practice, may have a better chance of delivering its added value to the trial.

Maximising the impact of qualitative research in feasibility studies for randomised controlled trials: guidance for researchers

Feasibility studies are increasingly undertaken in preparation for randomised controlled trials in order to explore uncertainties and enable trialists to optimise the intervention or the conduct of the trial. Qualitative research can be used to examine and address key uncertainties prior to a full trial. We present guidance that researchers, research funders and reviewers may wish to consider when assessing or undertaking qualitative research within feasibility studies for randomised controlled trials. The guidance consists of 16 items within five domains: research questions, data collection, analysis, teamwork and reporting. Appropriate and well conducted qualitative research can make an important contribution to feasibility studies for randomised controlled trials. This guidance may help researchers to consider the full range of contributions that qualitative research can make in relation to their particular trial. The guidance may also help researchers and others to reflect on the utility of such qualitative research in practice, so that trial teams can decide when and how best to use these approaches in future studies.

Risk and the Responsible Health Consumer: The Problematics of Entitlement among Callers to NHS Direct

NHS Direct, the 24-hour telephone helpline, uses modern communications technology to offer easier and faster access to advice about health, illness and the NHS so that people are better able to care for themselves and their families. In-depth interviews with callers to the service show that they bring with them discourses of the ‘deserving’ and ‘ undeserving’ familiar in the provision of other welfare services. The figure of the ‘time-waster’ is the NHS equivalent of the welfare ‘scrounger’, acting as a mechanism to problematize entitlement. NHS Direct dispels such fears and legitimizes demand. At the same time, ever-rising levels of service use constitute a threat to what callers value most about it.