© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted. Background Caregivers support self-management in heart failure but often experience stress, anxiety and ill health as a result of providing care. Aims 1. To identify the factors that contribute to the experience of anguish. 2. To understand how caregivers learn to live with what is frequently a challenging and demanding role. Methods Individual interviews with caregivers who had been caring for someone with heart failure for a minimum of 6 months. We used thematic analysis to inductively analyse transcripts. Results Twenty-two caregivers, from three centres in the United Kingdom, took part in individual interviews. The caregivers were aged between 39 and 84 years, and six were men. Twenty were in spousal or partner relationships. We found that caregivers often hide the extent of their emotional stress or anguish. We identified four main themes with explanatory subthemes - emotional impact (fear for the future and sense of hopelessness), role definition (changing sense of who I am, reduced resilience, learning care skills, role conflict and changing role), exclusion (exclusion by the cared-for person and by health professionals and feeling alone) and ignoring one's own health - that were associated with anguish. From these findings, we produced a caregiver needs assessment model in the context of caring for a person with heart failure. Conclusions and implications for practice Caregivers have many unmet and hidden needs. Primary care health professionals are well placed to meet the needs of caregivers. The model may be used by health and social care professionals to identify needs and to provide caregivers with targeted practical and emotional support; and for researchers developing interventions to enhance self-management in heart failure.

BACKGROUND: Guidelines and evidence-based drug treatment recommendations are usually based on the results of clinical trials, which have limited generalisability in routine clinical settings due to their restrictive eligibility criteria. These trials are also conducted in ideal and rigorously controlled settings. N of 1 trials, which are single patient multiple crossover studies, offer a means of increasing the evidence base and individualising care for individuals in clinical practice. This systematic review of the N of 1 drug treatment trial aims to investigate its usefulness for achieving optimal individualised patient care. METHODS: the following databases will be searched for relevant articles: MEDLINE, EMBASE, PsycINFO (all via Ovid), AMED, CINAHAL (via EBSCO), the Cochrane Library (including CENTRAL, NHS EED, and DARE), and Web of Science (Thomson Reuters). Supplementary searches will include ongoing trial databases and organisational websites. All N of 1 trials in which patients have been treated with a drug will be considered. Outcomes will include information on the clinical usefulness of N of 1 trials-i.e. achievement of optimal individualised care, health-care utilisation of patients, frequently used practices, experiences of clinical care or participation in N of 1 trials, adherence to treatment plan, and unwanted effects of the treatment. Screening of included papers will be undertaken independently by two reviewers, while data extraction and the quality of reporting will be conducted by one reviewer and checked by another. Both quantitative and qualitative summaries will be reported using appropriate methods. DISCUSSION: This review will provide new insights into the clinical utility of N of 1 drug trials in helping participants find the most acceptable treatment as defined by patients and clinicians based on the selected outcome measures and the perspectives of participants involved in such trials. Findings from this review will inform the development of a stakeholder workshop and guidance to help physicians find the optimum therapy for their patients and will help guide future research on N of 1 trials. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42016032452.

Having previously conducted qualitative syntheses of the diabetes literature, we wanted to explore the changes in
theoretical approaches, methodological practices, and the construction of substantive knowledge which have recently
been presented in the qualitative diabetes literature. The aim of this research was to explore the feasibility of synthesizing
existing qualitative syntheses of patient perspectives of diabetes using meta-study methodology. A systematic review
of qualitative literature, published between 2000 and 2013, was conducted. Six articles were identified as qualitative
syntheses. The meta-study methodology was used to compare the theoretical, methodological, analytic, and synthetic
processes across the six studies, exploring the potential for an overarching synthesis. We identified that while research
questions have increasingly concentrated on specific aspects of diabetes, the focus on systematic review processes
has led to the neglect of qualitative theory and methods. This can inhibit the production of compelling results with
meaningful clinical applications. Although unable to produce a synthesis of syntheses, we recommend that researchers
who conduct qualitative syntheses pay equal attention to qualitative traditions and systematic review processes, to
produce research products that are both credible and applicable.

OBJECTIVES: to identify the needs of caregivers supporting a person with heart failure and to inform the development of a caregiver resource to be used as part of a home-based self-management programme. METHODS: a qualitative study informed by thematic analysis involving 26 caregivers in individual interviews or a focus group. RESULTS: Three distinct aspects of caregiver support in heart failure management were identified. Firstly, caregivers identified needs about supporting management of heart failure including: coping with the variability of heart failure symptoms, what to do in an emergency, understanding and managing medicines, providing emotional support, promoting exercise and physical activity, providing personal care, living with a cardiac device and supporting depression management. Secondly, as they make the transition to becoming a caregiver, they need to develop skills to undertake difficult discussions about the role; communicate with health professionals; manage their own mental health, well-being and sleep; and manage home and work. Thirdly, caregivers require skills to engage social support, and voluntary and formal services while recognising that the long-term future is uncertain. DISCUSSION: the identification of the needs of caregiver has been used to inform the development of a home-based heart failure intervention facilitated by a trained health care practitioner.

Background

Qualitative research on self-management for people with Type 2 Diabetes Mellitus (T2DM) has typically reported one-off retrospective accounts of individuals’ strategies. The aim of this research was to identify the ways in which self-management strategies are perceived by people with T2DM as being either supportive or unsupportive over time, by using qualitative findings from both longitudinal intervention studies and usual care.
Methods

A systematic review of qualitative literature, published between 2000 and 2013, was conducted using a range of searching techniques. 1374 prospective qualitative papers describing patients’ experiences of self-management strategies for T2DM were identified and screened. of the 98 papers describing qualitative research conducted in the UK, we identified 4 longitudinal studies (3 intervention studies, 1 study of usual care). Key concepts and themes were extracted, reviewed and synthesised using meta-ethnography techniques.
Results

Aspects of self-management strategies in clinical trials (e.g. supported exercise regimens) can be perceived as enabling the control of biomarkers and facilitative of quality of life. In contrast, aspects of self-management strategies outwith trial conditions (e.g. self-monitoring) can be perceived of as negative influences on quality of life. For self-management strategies to be sustainable in the long term, patients require a sense of having a stake in their management that is appropriate for their beliefs and perceptions, timely information and support, and an overall sense of empowerment in managing their diabetes in relation to other aspects of their life. This enables participants to develop flexible diabetes management strategies that facilitate quality of life and long term medical outcomes.
Conclusions

This synthesis has explored how patients give meaning to the experiences of interventions for T2DM and subsequent attempts to balance biomarkers with quality of life in the long term. People with T2DM both construct and draw upon causal accounts as a resource, and a means to counter their inability to balance medical outcomes and quality of life. These accounts can be mediated by the provision of timely and tailored information and support over time, which can allow people to develop a flexible regimen that can facilitate both quality of life and medical outcomes.

INTRODUCTION: Diabetes is a chronic condition associated with many long-term complications. People with diabetes need to actively manage their condition, which can be complex. In consultations with healthcare professionals, patients receive advice about their diabetes but do not always discuss things which concern them, perhaps because of the perceived limited time or embarrassment. We want to test a 'preconsultation' intervention in which the patient is supported by a healthcare assistant to complete a web-based intervention aimed at producing an agenda to help them identify important areas for discussion in the consultation. Use of this agenda may enable the patient to play a more active role in that consultation and consequently become more confident, and hence more successful, in managing their condition. METHODS AND ANALYSIS: in this pilot randomised controlled trial, 120 people with diabetes will be randomised with equal allocation to receive the intervention or usual clinical care. The primary outcome is reduction in glycosylated haemoglobin(HbA1c). Secondary outcomes are patient-reported communication, enablement, self-care activity, diabetes-dependent quality of life, empowerment, satisfaction, health-related quality of life and resource use. The aim of the pilot study was to estimate parameters to inform the design of the definitive trial. Follow-up on quantitative outcomes will be at 3 and 6 months. A nested qualitative study will collect data on the patients' experiences of producing an agenda. Resource use data and medication use will also be collected via a review of medical records for a sample of participants. ETHICS AND DISSEMINATION: Approval was granted by the NHS Research Ethics Committee North West-Preston (13/NW/0123). Dissemination will include publication of quantitative and qualitative findings, and experience of public involvement in peer-reviewed journals. Results will also be disseminated to trial participants via workshops led by lay coapplicants. TRIAL REGISTRATION: ISRCTN75070242.

OBJECTIVE: to test the feasibility of running a randomised controlled trial of a preconsultation web-based intervention (Presenting Asking Checking Expressing (PACE-D)) to improve the quality of care and clinical outcomes in patients with diabetes. DESIGN AND SETTING: a feasibility study (with randomisation) conducted at outpatient diabetes clinics at two secondary care hospitals in Devon, UK. PARTICIPANTS: People with diabetes (type 1 and type 2) attending secondary care general diabetes outpatient clinics. INTERVENTION: the PACE-D, a web-based tool adapted for patients with diabetes to use before their consultation to generate an agenda of topics to discuss with their diabetologist. OUTCOMES: the percentage of eligible patients who were recruited and the percentage of participants for whom routine glycosylated haemoglobin (HbA1c) data (the putative primary outcome) could be extracted from medical notes and who completed secondary outcome assessments via questionnaire at follow-up were reported. RESULTS: in contrast with the planned recruitment of 120 participants, only 71 participants were randomised during the 7-month recruitment period. This comprised 18.7% (95% CI 14.9% to 23.0%) of those who were eligible. Mean (SD) age of the participants was 56.5 (12.4) years and 66.2% had type 1 diabetes. Thirty-eight patients were randomised to the intervention arm and 33 to the control arm. HbA1c data were available for only 73% (95% CI 61% to 83%) of participants at the 6â€
months follow-up. The questionnaire-based data were collected for 66% (95% CI 54% to 77%) of the participants at 6â€
months follow-up. Participants reported that the PACE-D tool was easy to use. CONCLUSIONS: a randomised controlled trial of the preconsultation web-based intervention as set out in our current protocol is not feasible without significant modification to improve recruitment and follow-up of participants. The study also provides insights into the feasibility and challenges of conducting complex intervention trials in everyday clinical practice. TRIAL REGISTRATION: ISRCTN75070242.

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted. Background Caregivers support self-management in heart failure but often experience stress, anxiety and ill health as a result of providing care. Aims 1. To identify the factors that contribute to the experience of anguish. 2. To understand how caregivers learn to live with what is frequently a challenging and demanding role. Methods Individual interviews with caregivers who had been caring for someone with heart failure for a minimum of 6 months. We used thematic analysis to inductively analyse transcripts. Results Twenty-two caregivers, from three centres in the United Kingdom, took part in individual interviews. The caregivers were aged between 39 and 84 years, and six were men. Twenty were in spousal or partner relationships. We found that caregivers often hide the extent of their emotional stress or anguish. We identified four main themes with explanatory subthemes - emotional impact (fear for the future and sense of hopelessness), role definition (changing sense of who I am, reduced resilience, learning care skills, role conflict and changing role), exclusion (exclusion by the cared-for person and by health professionals and feeling alone) and ignoring one's own health - that were associated with anguish. From these findings, we produced a caregiver needs assessment model in the context of caring for a person with heart failure. Conclusions and implications for practice Caregivers have many unmet and hidden needs. Primary care health professionals are well placed to meet the needs of caregivers. The model may be used by health and social care professionals to identify needs and to provide caregivers with targeted practical and emotional support; and for researchers developing interventions to enhance self-management in heart failure.

BACKGROUND: Guidelines and evidence-based drug treatment recommendations are usually based on the results of clinical trials, which have limited generalisability in routine clinical settings due to their restrictive eligibility criteria. These trials are also conducted in ideal and rigorously controlled settings. N of 1 trials, which are single patient multiple crossover studies, offer a means of increasing the evidence base and individualising care for individuals in clinical practice. This systematic review of the N of 1 drug treatment trial aims to investigate its usefulness for achieving optimal individualised patient care. METHODS: the following databases will be searched for relevant articles: MEDLINE, EMBASE, PsycINFO (all via Ovid), AMED, CINAHAL (via EBSCO), the Cochrane Library (including CENTRAL, NHS EED, and DARE), and Web of Science (Thomson Reuters). Supplementary searches will include ongoing trial databases and organisational websites. All N of 1 trials in which patients have been treated with a drug will be considered. Outcomes will include information on the clinical usefulness of N of 1 trials-i.e. achievement of optimal individualised care, health-care utilisation of patients, frequently used practices, experiences of clinical care or participation in N of 1 trials, adherence to treatment plan, and unwanted effects of the treatment. Screening of included papers will be undertaken independently by two reviewers, while data extraction and the quality of reporting will be conducted by one reviewer and checked by another. Both quantitative and qualitative summaries will be reported using appropriate methods. DISCUSSION: This review will provide new insights into the clinical utility of N of 1 drug trials in helping participants find the most acceptable treatment as defined by patients and clinicians based on the selected outcome measures and the perspectives of participants involved in such trials. Findings from this review will inform the development of a stakeholder workshop and guidance to help physicians find the optimum therapy for their patients and will help guide future research on N of 1 trials. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42016032452.

Having previously conducted qualitative syntheses of the diabetes literature, we wanted to explore the changes in
theoretical approaches, methodological practices, and the construction of substantive knowledge which have recently
been presented in the qualitative diabetes literature. The aim of this research was to explore the feasibility of synthesizing
existing qualitative syntheses of patient perspectives of diabetes using meta-study methodology. A systematic review
of qualitative literature, published between 2000 and 2013, was conducted. Six articles were identified as qualitative
syntheses. The meta-study methodology was used to compare the theoretical, methodological, analytic, and synthetic
processes across the six studies, exploring the potential for an overarching synthesis. We identified that while research
questions have increasingly concentrated on specific aspects of diabetes, the focus on systematic review processes
has led to the neglect of qualitative theory and methods. This can inhibit the production of compelling results with
meaningful clinical applications. Although unable to produce a synthesis of syntheses, we recommend that researchers
who conduct qualitative syntheses pay equal attention to qualitative traditions and systematic review processes, to
produce research products that are both credible and applicable.

OBJECTIVES: to identify the needs of caregivers supporting a person with heart failure and to inform the development of a caregiver resource to be used as part of a home-based self-management programme. METHODS: a qualitative study informed by thematic analysis involving 26 caregivers in individual interviews or a focus group. RESULTS: Three distinct aspects of caregiver support in heart failure management were identified. Firstly, caregivers identified needs about supporting management of heart failure including: coping with the variability of heart failure symptoms, what to do in an emergency, understanding and managing medicines, providing emotional support, promoting exercise and physical activity, providing personal care, living with a cardiac device and supporting depression management. Secondly, as they make the transition to becoming a caregiver, they need to develop skills to undertake difficult discussions about the role; communicate with health professionals; manage their own mental health, well-being and sleep; and manage home and work. Thirdly, caregivers require skills to engage social support, and voluntary and formal services while recognising that the long-term future is uncertain. DISCUSSION: the identification of the needs of caregiver has been used to inform the development of a home-based heart failure intervention facilitated by a trained health care practitioner.

Objectives to develop an understanding of the key features of person-centred care (PCC) in relation to general dental practice from a patient's perspective.

Background PCC is acknowledged as an important dimension of quality with 'patient experience' increasingly used as a marker of quality within the NHS. A Dental Quality and Outcomes Framework (DQOF) is currently being piloted in the UK, which includes patient experience as one of the three domains. It is recognised that there is limited understanding of PCC within dentistry, with little evidence published on the subject.

Methods This study uses qualitative methods to explore the views of 16 purposively sampled patients living in Southwest England. In-depth semi-structured interviews were recorded, transcribed, coded and analysed thematically.

Results PCC was viewed as key in the delivery of high-quality care. Dimensions of PCC were identified and categorised as relational or functional aspects of care. Relational aspects of care were viewed as being central to the delivery of PCC with five components identified and named: connection, attitude, communication, empowerment and feeling valued. Functional aspects of care were identified as healthcare system and physical environment and were noted to influence PCC to a variable degree.

Conclusion a model of PCC in dentistry is proposed which has been generated from empirical evidence that represents the views of patients. It is hoped that this may inform and influence development of a tool to measure PCC within any future version of the DQOF.

Background

Qualitative research on self-management for people with Type 2 Diabetes Mellitus (T2DM) has typically reported one-off retrospective accounts of individuals’ strategies. The aim of this research was to identify the ways in which self-management strategies are perceived by people with T2DM as being either supportive or unsupportive over time, by using qualitative findings from both longitudinal intervention studies and usual care.
Methods

A systematic review of qualitative literature, published between 2000 and 2013, was conducted using a range of searching techniques. 1374 prospective qualitative papers describing patients’ experiences of self-management strategies for T2DM were identified and screened. of the 98 papers describing qualitative research conducted in the UK, we identified 4 longitudinal studies (3 intervention studies, 1 study of usual care). Key concepts and themes were extracted, reviewed and synthesised using meta-ethnography techniques.
Results

Aspects of self-management strategies in clinical trials (e.g. supported exercise regimens) can be perceived as enabling the control of biomarkers and facilitative of quality of life. In contrast, aspects of self-management strategies outwith trial conditions (e.g. self-monitoring) can be perceived of as negative influences on quality of life. For self-management strategies to be sustainable in the long term, patients require a sense of having a stake in their management that is appropriate for their beliefs and perceptions, timely information and support, and an overall sense of empowerment in managing their diabetes in relation to other aspects of their life. This enables participants to develop flexible diabetes management strategies that facilitate quality of life and long term medical outcomes.
Conclusions

This synthesis has explored how patients give meaning to the experiences of interventions for T2DM and subsequent attempts to balance biomarkers with quality of life in the long term. People with T2DM both construct and draw upon causal accounts as a resource, and a means to counter their inability to balance medical outcomes and quality of life. These accounts can be mediated by the provision of timely and tailored information and support over time, which can allow people to develop a flexible regimen that can facilitate both quality of life and medical outcomes.

OBJECTIVES: Patients and policy makers advocate that drug treatments should be individualised. However, the term is used in a variety of ways. We set out to identify the range of related terminology and concepts in the general field of individualisation, map out the relationships between these concepts and explore how patients' perspectives are considered. DESIGN: We consulted members of an established patient and public involvement group about their experience of medicine taking for long-term conditions and their ideas about individualisation. We then conducted a scoping review of the literature to explore how terms surrounding individualisation of drug treatment are used and defined in the literature, and to explore the extent to which patients' perspectives are represented, with a view to informing future recommendations as to how individualisation can be operationalised. METHODS: We identified relevant literature using a range of search strategies. Two researchers independently extracted definitions of terms using a template. Inductive and deductive methods were used to explore the data. RESULTS: Definitions were categorised according to the following themes: medical management; pharmacogenetics, the patient's perspective; interactions between the healthcare provider and patient and management of long-term conditions. CONCLUSIONS: Within the literature reviewed, the involvement of patients in the ongoing management of drug treatment was largely absent. We propose the use of a new term 'mutually agreed tailoring' (MAT). This describes the ongoing pharmacological management of conditions that incorporates patients' specific needs, experiences and existing strategies for using their medications, and the professionals' clinical judgement. This usually includes patients monitoring their symptoms and, with the support of the professional, making appropriate product, dose or timing adjustments as necessary. Our previous work suggests that many patients and doctors are successfully practising MAT, so we suggest that a formal description may facilitate wider utilisation of strategies that will improve patient outcomes.

BACKGROUND: Delivering improvements in quality is a key objective within most healthcare systems, and a view which has been widely embraced within the NHS in the United Kingdom. Within the NHS, quality is evaluated across three key dimensions: clinical effectiveness, safety and patient experience, with the latter modelled on the Picker Principles of Patient-Centred Care (PCC). Quality improvement is an important feature of the current dental contract reforms in England, with "patient experience" likely to have a central role in the evaluation of quality. An understanding and appreciation of the evidence underpinning PCC within dentistry is highly relevant if we are to use this as a measure of quality in general dental practice. METHODS: a systematic review of the literature was undertaken to identify the features of PCC relevant to dentistry and ascertain the current research evidence base underpinning its use as a measure of quality within general dental practice. RESULTS: Three papers were identified which met the inclusion criteria and demonstrated the use of primary research to provide an understanding of the key features of PCC within dentistry. None of the papers identified were based in general dental practice and none of the three studies sought the views of patients. Some distinct differences were noted between the key features of PCC reported within the dental literature and those developed within the NHS Patient Experience Framework. CONCLUSIONS: This systematic review reveals a lack of understanding of PCC within dentistry, and in particular general dental practice. There is currently a poor evidence base to support the use of the current patient reported outcome measures as indicators of patient-centredness. Further research is necessary to understand the important features of PCC in dentistry and patients' views should be central to this research.

INTRODUCTION: Diabetes is a chronic condition associated with many long-term complications. People with diabetes need to actively manage their condition, which can be complex. In consultations with healthcare professionals, patients receive advice about their diabetes but do not always discuss things which concern them, perhaps because of the perceived limited time or embarrassment. We want to test a 'preconsultation' intervention in which the patient is supported by a healthcare assistant to complete a web-based intervention aimed at producing an agenda to help them identify important areas for discussion in the consultation. Use of this agenda may enable the patient to play a more active role in that consultation and consequently become more confident, and hence more successful, in managing their condition. METHODS AND ANALYSIS: in this pilot randomised controlled trial, 120 people with diabetes will be randomised with equal allocation to receive the intervention or usual clinical care. The primary outcome is reduction in glycosylated haemoglobin(HbA1c). Secondary outcomes are patient-reported communication, enablement, self-care activity, diabetes-dependent quality of life, empowerment, satisfaction, health-related quality of life and resource use. The aim of the pilot study was to estimate parameters to inform the design of the definitive trial. Follow-up on quantitative outcomes will be at 3 and 6 months. A nested qualitative study will collect data on the patients' experiences of producing an agenda. Resource use data and medication use will also be collected via a review of medical records for a sample of participants. ETHICS AND DISSEMINATION: Approval was granted by the NHS Research Ethics Committee North West-Preston (13/NW/0123). Dissemination will include publication of quantitative and qualitative findings, and experience of public involvement in peer-reviewed journals. Results will also be disseminated to trial participants via workshops led by lay coapplicants. TRIAL REGISTRATION: ISRCTN75070242.

Objective: to explore doctors' understanding of individualisation of drug treatments, and identify the methods used to achieve individualisation. Design: in this exploratory study, we used in-depth qualitative interviews with doctors to gain insight into their understanding of the term 'individualised treatments' and the methods that they use to achieve it. Participants: 16 general practitioners in 6 rural and 10 urban practices, 2 geriatricians and 2 clinical academics were recruited. Setting: Primary and secondary care in South West of England. Results: Understanding of individualisation varied between doctors, and their initial descriptions of individualisation were not always consistent with subsequent examples of the patients they had treated. Understandings of, and methods used to achieve, individualised treatment were frequently discussed in relation to making drug treatment decisions. Few doctors spoke of using strategies to support patients to individualise their own treatments after the consultation. Conclusions: Despite its widespread use, variation in doctors' understanding of the term individualisation highlights the need for it to be defined. Efforts are needed to develop effective methods that would offer a structured approach to support patients to manage their treatments after consultations.

This paper explores the concept of patient-centred care as a dimension of quality as applied to dentistry and provides a systematic review of the literature. The new NHS dental contract, which is currently being piloted in England, is committed to delivering improvements in quality. The Dental Quality and Outcomes Framework has been developed as a tool to measure quality and focuses on three key dimensions: clinical effectiveness, safety and patient experience. A systematic review of the literature reveals a lack of information pertaining to patient-centred care within dentistry, and in particular general dental practice. It would also suggest that there is currently a poor evidence base to support the use of the current patient reported outcome measures as indicators of patient centredness. © 2013 Macmillan Publishers Limited. All rights reserved.

This paper explores the concept of patient-centred care as a dimension of quality as applied to dentistry and provides a systematic review of the literature. The new NHS dental contract, which is currently being piloted in England, is committed to delivering improvements in quality. The Dental Quality and Outcomes Framework has been developed as a tool to measure quality and focuses on three key dimensions: clinical effectiveness, safety and patient experience. A systematic review of the literature reveals a lack of information pertaining to patient-centred care within dentistry, and in particular general dental practice. It would also suggest that there is currently a poor evidence base to support the use of the current patient reported outcome measures as indicators of patient centredness.

The majority of people with degenerative neurological conditions are cared for within their own families. Cognitive impairment can be a significant and increasing symptom of these conditions. In this article we report how a team of experienced researchers carried out a meta-ethnography of qualitative research articles focusing on the impact of caring for a loved one with cognitive impairment. We followed the seven-step process outlined by Noblit and Hare. Synthesized findings from 31 papers suggest emotional impact is complex and uncertain and varies from day to day. The benefit of using meta-ethnography is that the results represent a larger sample size and a reinterpretation of multiple studies can hold greater application for practice. The results of this study offer an opportunity for nurses to be aware of both the positive and negative sides of caring and being cared for. This knowledge can be used to discuss with patients and carers how best to prepare for decreasing cognition and still maintain a worthwhile quality of life. © 2013 Wiley Publishing Asia Pty Ltd.

The majority of people with degenerative neurological conditions are cared for within their own families. Cognitive impairment can be a significant and increasing symptom of these conditions. In this article we report how a team of experienced researchers carried out a meta-ethnography of qualitative research articles focusing on the impact of caring for a loved one with cognitive impairment. We followed the seven-step process outlined by Noblit and Hare. Synthesized findings from 31 papers suggest emotional impact is complex and uncertain and varies from day to day. The benefit of using meta-ethnography is that the results represent a larger sample size and a reinterpretation of multiple studies can hold greater application for practice. The results of this study offer an opportunity for nurses to be aware of both the positive and negative sides of caring and being cared for. This knowledge can be used to discuss with patients and carers how best to prepare for decreasing cognition and still maintain a worthwhile quality of life.

OBJECTIVE: to obtain the views of women on their experiences of decision making about the method of delivery following a previous caesarean section and the role of decision aids in this process. DESIGN: Qualitative study nested within a randomised controlled trial, using repeat semi-structured interviews conducted pre- and postnatally. Data were analysed using a framework approach. SETTING: Three maternity units in south-west England and Scotland. SAMPLE: Purposive sample of 30 women participating in a randomised controlled trial of two decision aids for women making a decision about mode of next delivery following a previous caesarean section (Decision Aids for Mode of next Delivery). RESULTS: Thirty women were interviewed during pregnancy about their experience of decision making about the mode of delivery and 22 were re-interviewed postnatally. Key themes were: role of decision aids in reducing decisional conflict and uncertainty during the pregnancy; impact of decision aids on knowledge and anxiety; the relationship between prior preferences, decisions and actual outcome; and the mediating role of decision aids. CONCLUSIONS: Women making a decision about mode of delivery following previous caesarean section value some form of structured information to help reduce decisional conflict. Information provision for women making this decision needs to be relevant to their individual needs. Decision analysis may help reconcile prior preferences and the actual mode of delivery.

In this article I discuss the challenges of managing and analysing qualitative data produced from in-depth interviews. I detail how two methods of data analysis have been combined to explore older women’s (over 35yrs) accounts of early pregnancy loss -. which formed the data for the authors PhD research. A computer assisted qualitative data analysis (CAQDAS) package, in this case NUDIST4. was a useful tool for managing the breadth of data, and permitted the initial coding in line with the objectives of a larger qualitative study. However, pertinent themes were obscured by the sheer volume of data that had been collected. In contrast, the voice relational method was of value in exploring the depth of the data, and the ways in which these women contextualised their experiences in relation to other aspects of their lived biography. Researchers new to qualitative data analysis are often concerned that CAQDAS techniques will in some way dictate how the data will be analysed. In this article I suggest that this anxiety is unfounded – as the analysis technique depends upon the researcher(s) and the theoretical perspective(s) that inform(s) the research process. I propose that CAQDAS packages are effective tools for data management, but a more theoretically informed means, such as the voice relational method, can augment the process of analysis. I suggest that it is essential that, whichever means we employ, as researchers we are explicit about how we actually do data analysis.

This paper explores the special nature of bereavement in the case of first trimester miscarriage. It is theoretically informed by the sociological literature concerning death and bereavement and is empirically grounded in interviews with 79 women. We argue that the 'scientisation of death' in modern societies contributes to the uncertainty and isolation which distinguish early miscarriage as a unique form of loss. In the absence of clear cultural scripts to draw upon, many women interviewed gave meaning to their loss as 'what might have been' or what we call 'the loss of possibility'. Some women juxtaposed the failure of their pregnancy with that of modern medicine either to prevent the loss or provide a credible explanation for their miscarriage. Little research has been conducted in this area, since the pioneering work of Lovell (1983) and Cecil (1984). Our research draws on one of the largest and most systematic bodies of data ever collected on early miscarriage, and provides continued evidence of the traumas of miscarriage. The strategies employed by women to make sense of, and come to terms with, their experience of miscarriage are explored, employing a typology of pre-modern, modern and postmodern responses.

This paper examines the endurance of an idealized version of birth – the natural (intervention free) birth – and the tensions between the discourse surrounding natural birth and the experiences of women who had operative deliveries (surgically assisted hospital births). The paper uses utopian theory to explore the discourse of natural birth. It draws on empirical research with 27 women who had experienced operative delivery. Interviews with these women highlight the contested and
problematic nature of the natural birth discourse. While these women desire and support the idea of natural birth their own experience is of a range of medical and surgical interventions – an experience that was, for many of these women, difficult to reconcile. Notwithstanding this experience many of the women maintain a strong commitment to the natural birth ideal, indicating its enduring power. Rather than
employing a traditional utopian approach ourselves (one that dictates the form and content of a possible future), we employ a more recent approach, drawing on the work of Levitas and Sargisson, and Foucault’s notion of heterotopia, which has the potential to encompass and facilitate a range of possible birth experiences.

Background: Miscarriage affects around one in six pregnancies. Much research has taken place identifying the consequences of this for parents but is mainly quantitative. of the limited qualitative studies, none have explored women's experiences of the methods of miscarriage management received. Aim: to assess the social and personal impact of different management methods (expectant, medical and surgical) on women's experience of first trimester miscarriage. Design of study: Qualitative interviews using a topic guide with a purposive cohort of four categories of women (each management method plus non-participants) 6 months to 1 year after first trimester miscarriage. Focus groups with both research participants and health workers. Setting: Women from three hospitals in the South West of England that participated in the Miscarriage Treatment (MIST) trial. Method: Seventy -two interviews were undertaken between September 1999 and June 2000. There were also five focus groups (47 participants) and two feedback sessions (8 participants) with written feedback from 12 women. Interviews lasted 0.5-2.5 hours generating over 2000 A4 pages of transcripts. The transcripts were analysed for common themes, using standard proformas, which were filled in by individual team members and then discussed by the whole research team. Iterative readings in the light of new emerging issues ensured that new themes could be identified throughout the analytical process. All transcripts were then encoded for the identified themes using NUDIST. Results: Common themes emerged across all management options although some were specific to just one or two management options. The five major themes arising out of the data analysis were: intervention; experiences of care; finality; the 'baby'; and pain and bleeding. Conclusions: Women's experiences and beliefs vary widely and their preferences need to be considered in their early miscarriage management. The three methods have different benefits and problems from the women's point of view. Competence and caring from professionals are especially important. ©British Journal of General Practice 2006.

Objective: to obtain the views of women on the impact of operative delivery in the second stage of labour. Design: Qualitative interview study. Setting: Two urban teaching hospitals in the United Kingdom. Participants: Purposive sample of 27 women who had undergone operative delivery in the second stage of labour between January 2000 and January 2002. Key themes: Preparation for birth, understandings of the indications for operative delivery, and explanation or debriefing after birth. Results: the women felt unprepared for operative delivery and thought that their birth plan or antenatal classes had not catered adequately for this event. They emphasised the importance of maintaining an open mind about the management of labour. They had difficulty understanding the need for operative delivery despite a review by medical and midwifery staff before discharge. Operative delivery had a noticeable impact on women's views about future pregnancy and delivery. Conclusions: Women consider postnatal debriefing and medical review important deficiencies in current care. Those who experienced operative delivery in the second stage of labour would welcome the opportunity to have a later review of their intrapartum care, physical recovery, and management of future pregnancies.