Uptake of self-management education programmes for people with type 2 diabetes in primary care through the embedding package: a cluster randomised control trial and ethnographic study.

BACKGROUND: Self-management education programmes are cost-effective in helping people with type 2 diabetes manage their diabetes, but referral and attendance rates are low. This study reports on the effectiveness of the Embedding Package, a programme designed to increase type 2 diabetes self-management programme attendance in primary care. METHODS: Using a cluster randomised design, 66 practices were randomised to: (1) a wait-list group that provided usual care for nine months before receiving the Embedding Package for nine months, or (2) an immediate group that received the Embedding Package for 18 months. 'Embedders' supported practices and self-management programme providers to embed programme referral into routine practice, and an online 'toolkit' contained embedding support resources. Patient-level HbA1c (primary outcome), programme referral and attendance data, and clinical data from 92,977 patients with type 2 diabetes were collected at baseline (months - 3-0), step one (months 1-9), step 2 (months 10-18), and 12 months post-intervention. An integrated ethnographic study including observations, interviews, and document analysis was conducted using interpretive thematic analysis and Normalisation Process Theory. RESULTS: No significant difference was found in HbA1c between intervention and control conditions (adjusted mean difference [95% confidence interval]: -0.10 [-0.38, 0.18] mmol/mol; -0.01 [-0.03, 0.02] %). Statistically but not clinically significantly lower levels of HbA1c were found in people of ethnic minority groups compared with non-ethnic minority groups during the intervention condition (-0.64 [-1.08, -0.20] mmol/mol; -0.06% [-0.10, -0.02], p = 0.004), but not greater self-management programme attendance. Twelve months post-intervention data showed statistically but not clinically significantly lower HbA1c (-0.56 [95% confidence interval: -0.71, -0.42] mmol/mol; -0.05 [-0.06, -0.04] %; p < 0.001), and higher self-management programme attendance (adjusted odds ratio: 1.13; 95% confidence interval: 1.02, 1.25; p = 0.017) during intervention conditions. Themes identified through the ethnographic study included challenges for Embedders in making and sustaining contact with practices and providers, and around practices' interactions with the toolkit. CONCLUSIONS: Barriers to implementing the Embedding Package may have compromised its effectiveness. Statistically but not clinically significantly improved HbA1c among ethnic minority groups and in longer-term follow-up suggest that future research exploring methods of embedding diabetes self-management programmes into routine care is warranted. TRIAL REGISTRATION: ISRCTN23474120, registered 05/04/2018.

Direct-to-consumer genetic testing and the changing landscape of gamete donor conception: key issues for practitioners and stakeholders.

RESEARCH QUESTION: What effect does direct-to-consumer genetic testing (DTCGT) have on information finding and sharing in relation to gamete donor conception? DESIGN: This study used in-depth qualitative interviews with parents through donor conception, donors, the relatives of donors and donor-conceived people who have used, or considered using, DTCGT. Interviews were conducted between September 2021 and February 2023. Sixty people defined themselves as having been affected by donor conception and DTCGT. Fifty-seven of these were resident in the UK at the time of interview. The final sample included 19 (spermatozoa, egg or embryo) donors, 25 donor-conceived people, 20 parents through donor conception and two relatives of donors. Five participants occupied more than one of these roles. RESULTS: The rise of DTCGT is affecting how information about donor conception is managed: it shifts patterns of knowledge about donor conception; increases flexibility regarding the age of access to information about donor relatives; can lead to a growing role for non-professionals, including wider family members, in gatekeeping information about donor conception; accentuates the effect of donor conception for donors' and the relatives of donor-conceived people; and shapes, and is shaped, by the formal regulatory donor information management systems. CONCLUSION: Fertility professionals should inform people using, or considering, donor conception, or (potential) donors, about the different ways DTCGT can affect sharing information about donor conception. Support is needed for those affected by these changes.

Enabling Adults With Severe Asthma to Exercise: A Qualitative Examination of the Challenges for Patients and Health Care Professionals.

BACKGROUND: Adults living with severe asthma have lower physical activity levels, particularly high-intensity physical activity, compared with their healthy peers. Physical inactivity is associated with increased morbidity and mortality. OBJECTIVE: To understand patient and health care professional attitudes toward exercise and physical activity to inform future strategies for the improvement of healthy lifestyle behaviors, including exercise. METHODS: Participants recruited from a specialist difficult asthma service were interviewed individually, and health care professionals (HCPs) from primary care, secondary care, and a tertiary center were invited to attend focus groups. Interviews and focus groups were transcribed verbatim. We performed thematic analysis on interviews and focus groups separately, followed by an adapted framework analysis to analyze datasets together. RESULTS: Twenty-nine people with severe asthma participated in a semi-structured interview. A total of 51 HCPs took part in eight focus groups across the East Midlands, United Kingdom. Final analysis resulted in three major themes: barriers to exercise and exercise counseling - in which patients and HCPs identified disease and non-disease factors affecting those living with severe asthma; attitudes toward HCP support for exercise - highlighting education needs for HCPs and preference for supervised exercise programs; and areas for system improvement in supporting patients and HCPs - challenges exist across health sectors that limit patient support are described. CONCLUSIONS: Patients identified the important role of HCPs in supporting and advising on lifestyle change. Despite a preference for supervised exercise programs, both patient and HCP barriers existed. To meet patients' varied support needs, improved integration of services is required and HCP skills need extending.

Egg donation in the age of vitrification: A study of egg providers' perceptions and experiences in the UK, Belgium and Spain.

IVF treatment involving donated eggs increases yearly. Numerous technical and commercial transformations have reshaped how eggs are retrieved, stored and managed. A key transformation is vitrification; a 'fast freezing' method that allows efficient preservation of eggs, and therefore more flexibility in use, giving rise to new commercial possibilities. There has been limited focus on egg providers' experiences in the context of vitrification and related commercialisation. We report findings from a study in the UK, Spain and Belgium, where we interviewed 75 egg providers. Comparing experiences within different donation 'regimes' allows an exploration of how varying national practices and policies shape information-giving and women's experiences. In the UK, a system of 'informed gift-giving' was described, where egg providers saw their actions as not-for-profit and felt relatively well informed. In Belgium, the system was presented as 'trusted tissue exchange': with less information-giving than in the UK, but clinics were trusted to act responsibly. In Spain, a 'closed-door, market-driven' system was described, whereby egg providers received little information and expressed concerns about generation of excess profit. Our findings extend understandings of how egg donation is managed at the national level and how donation regimes produce specific experiences, expectations and subjectivities amongst tissue providers.

Using Normalisation Process Theory (NPT) to develop an intervention to improve referral and uptake rates for self-management education for patients with type 2 diabetes in UK primary care.

BACKGROUND: Referral and uptake rates of structured self-management education (SSME) for Type 2 diabetes (T2DM) in the UK are variable and relatively low. Research has documented contributing factors at patient, practitioner and organisational levels. We report a project to develop an intervention to improve referral to and uptake of SSME, involving an integrative synthesis of existing datasets and stakeholder consultation and using Normalisation Process Theory (NPT) as a flexible framework to inform the development process. METHODS: A three-phase mixed-methods development process involved: (1) synthesis of existing evidence; (2) stakeholder consultation; and (3) intervention design. The first phase included a secondary analysis of data from existing studies of T2DM SSME programmes and a systematic review of the literature on application of NPT in primary care. Influences on referral and uptake of diabetes SSME were identified, along with insights into implementation processes, using NPT constructs to inform analysis. This gave rise to desirable attributes for an intervention to improve uptake of SSME. The second phase involved engaging with stakeholders to prioritise and then rank these attributes, and develop a list of associated resources needed for delivery. The third phase addressed intervention design. It involved translating the ranked attributes into essential components of a complex intervention, and then further refinement of components and associated resources. RESULTS: In phase 1, synthesised analysis of 64 transcripts and 23 articles generated a longlist of 46 attributes of an embedded SSME, mapped into four overarching domains: valued, integrated, permeable and effectively delivered. Stakeholder engagement in phase 2 progressed this to a priority ranked list of 11. In phase 3, four essential components attending to the prioritised attributes and forming the basis of the intervention were identified: 1) a clear marketing strategy for SSME; 2) a user friendly and effective referral pathway; 3) new/amended professional roles; and 4) a toolkit of resources. CONCLUSIONS: NPT provides a flexible framework for synthesising evidence for the purpose of developing a complex intervention designed to increase and reduce variation in uptake to SSME programmes in primary care settings.

Key considerations when involving children in health intervention design: reflections on working in partnership with South Asian children in the UK on a tailored Management and Intervention for Asthma (MIA) study.

Participatory research is an empowering process through which individuals can increase control over their lives, and allows researchers/clinicians to gain a clearer understanding of a child's needs. However, involving children in participatory research is still relatively novel, despite national and international mandates to engage children in decision making. This paper draws on the learnings from designing the Management and Intervention for Asthma (MIA) study, which used a collaborative participatory method to develop an intervention-planning framework for South Asian children with asthma. There are currently 1 million children in the UK receiving treatment for asthma, making it one of the most prevalent chronic childhood illnesses. Symptoms of asthma are often underrecognized in children from South Asian communities in the UK, contributing to increased disease severity and increased attendance at the emergency department compared to White British children. Despite this, ethnic minorities are often excluded from research and thus absent from the 'evidence base', making it essential to hear their perspectives if health inequalities are to be successfully addressed. We worked alongside healthcare professionals, community facilitators, parents, and children to identify the key concerns and priorities they had and then designed the framework around their needs. Reflecting on the process, we identified several key considerations that need to be addressed when co-developing interventions with children. These include the power dynamics between the parent/researcher and child; navigating the consent/assent process; how parental involvement might affect the research; establishing a convenient time and location; how to keep children engaged throughout the process; tailoring activities to different levels of ability; and accounting for cultural differences. These factors were considered by the researchers when designing the study, however, implementing them was not without its challenges and highlighted the need for researchers to develop expertise in this field. Tailoring existing research methods allowed us to explore children's perceptions, priorities, and experiences of illness more effectively. However, involving children in participatory research is a complex undertaking, and researchers need to ensure that they have the expertise, time, and resources necessary to be able to fully support the needs of child participants before deciding to commit to this approach.

Involving families in health research gives children the opportunity to have more control over their healthcare and can help researchers/clinicians to better understand a child's needs. However, involving children in research is still an uncommon practice despite international pressures to include children in decision making. This paper reflects on the development of the Management and Intervention for Asthma study, which worked with communities to develop a framework for planning health interventions for South Asian children with asthma. There are currently 1 million children in the UK being treated for asthma, making it one of the most common chronic childhood illnesses. Symptoms of asthma are overlooked in children from South Asian communities in the UK, leading to worse health outcomes and more visits to the emergency department. We worked with the community to identify the key concerns and priorities they had, and then jointly designed the framework around their needs. We identified several key things to consider when co-developing interventions with children: Power dynamics Consent/Assent Parental involvement Time and location Engagement Diversity of needs Ethnicity and Culture Adapting our research and engagement methods to suit children's needs enabled us to involve them in the study in a way that allowed us to effectively explore their views, priorities, and experiences of their illness. However, researchers need to make sure that they have the expertise, time, and resources to be able to support the needs of child participants.

From scarcity to sisterhood: The framing of egg donation on fertility clinic websites in the UK, Belgium and Spain.

The use of third-party eggs now forms an integral part of a global reproductive bioeconomy. In order to meet clinics' growing need for donors, they employ a range of recruitment strategies including adverts for donors via their publicly facing websites. Such websites are also key sites for the articulation and popularisation of culturally specific narratives about egg donation and are therefore a rich source of data regarding the social, cultural and economic framing of bodily donation. Drawing on conceptualisations from literature on blood, organ and tissue donation we focus attention on what we refer to as egg donation 'recruitment regimes'; exploring how nationally situated recruitment and marketing strategies are used by fertility clinics to frame ideas about egg donation. We use frame analysis to analyse 62 clinic websites in the UK, Spain and Belgium, connecting the framing of egg donation to the regulatory context of each country. Our data show that altruism and solidarity are dominant frames that underpin the supranational framing of egg provision within the EU. However, there are also important nationally specific differences that both reflect and produce different versions of egg donation. We describe three distinct and nationally specific 'recruitment regimes' which articulate different versions of egg donation: a 'scarce gift with enduring responsibility' in the UK, 'disconnected tissue exchange' in Belgium and 'mutually beneficial sisterhood' in Spain. These regimes contribute towards public imaginaries and shape egg donation as a social practice by creating opportunities for (some) women to give eggs in specific ways. These representations illustrate the complex entanglements of national policy, supranational regulation, cultural preferences and commercial priorities within the fertility treatment landscape.

The missed disease? Endometriosis as an example of 'undone science'.

Endometriosis is a chronic gynaecological condition which has been referred to as the 'missed disease' due to its unclear aetiology and inconsistencies in its diagnosis and management. Unlike other long-term conditions such as diabetes and asthma, endometriosis has remained largely ignored in government policy and research funding globally. Drawing on scholarship from the growing field of 'ignorance studies', this paper considers how ambiguity around endometriosis is part of a wider constellation of discursive, material and political factors which enrol certain forms of knowledge whilst silencing, ignoring or marginalizing other forms of knowledge. It uses concepts of 'undone science' and 'wilful ignorance' to explore how an absence of knowledge on endometriosis is a result of structural, cultural and political processes and forces which privilege certain voices and communities. This paper suggests that the association of endometriosis with historically specific constructions of menstruation and women's pain has informed contemporary imaginaries around the condition, including ideas about women being somehow accountable for their own illnesses. Applying an ignorance lens demonstrates how the legacy of invisibility of endometriosis shapes its place in the present political and social arena, and is reflective of a process of undone science. The paper concludes by arguing that the social and political significance of endometriosis as a chronic, life-limiting condition which affects millions of women globally continues to need attention, illumination and critique.

A Baby at All Costs? Exploring the Use and Provision of Unproven Adjuvant Treatments in the Context of IVF.

The year 2018 marked 40 years since the birth of Louise Brown, the first baby born as a result of pioneering in vitro fertilization (IVF) treatment. Since then, advances have seen a wide range of reproductive technologies emerge into clinical practice, including adjuvant treatments often referred to as IVF "add-ons." However, these "optional extras" have faced growing criticism, especially when they have often come at additional financial cost to the patient and have little evidence supporting their efficacy to improve pregnancy or birth rates. Despite this, according to the latest national patient survey by the Human Fertilisation and Embryology Authority, three quarters of patients who had fertility treatment in the United Kingdom in the past two years had at least one type of treatment add-on highlighting the growing demand for these interventions. This article uses a psychosocial perspective to consider the motivations behind patient and clinician behavior along with the wider societal and economic factors that may be impacting upon the increase in the use of adjuvant treatments in fertility clinics more widely. It suggests the reasons fertility patients use unproven "optional extras" are complex, with interpersonal, psychological, and social factors intertwining to generate an increase in the use of IVF add-ons.

'Nothing will stop me from giving the gift of life': a qualitative analysis of egg donor forum posts.

Online spaces are increasingly important for our collective consciousness and provide an opportunity to document changing ideas, subjectivities and experiences surrounding new reproductive technologies. This paper reports on the first study of egg donation and online discussion boards in UK-based forums. Using thematic analysis, we investigated how donors use online forums and explored how they present themselves as possible donors in online spaces. Three major themes were identified: 'using online forums to exchange knowledge and experiences', 'egg donation as a gift' and 'having a drive to donate'. Findings from the study reveal how donors enter online spaces looking for advice, presenting themselves as available and weaving themselves into an online community. There exist multiple ways in which donors construct and narrate their own participation in the process of egg donation. Presenting a donor identity in these online forums is not a straightforward matter of helping by giving but also involves a specific drive. While more research is needed on the range of possible motivations, this study gives a better understanding of the available online information and the co-construction of donor identities on discussions boards.

A structured collaborative approach to intervention design using a modified intervention mapping approach: a case study using the Management and Interventions for Asthma (MIA) project for South Asian children.

BACKGROUND: To describe how using a combined approach of community-based participatory research and intervention mapping principles could inform the development of a tailored complex intervention to improve management of asthma for South Asian (SA) children; Management and Interventions for Asthma (MIA) study. METHODS: A qualitative study using interviews, focus groups, workshops, and modified intervention mapping procedures to develop an intervention planning framework in an urban community setting in Leicester, UK. The modified form of intervention mapping (IM) included: systematic evidence synthesis; community study; families and healthcare professionals study; and development of potential collaborative intervention strategies. Participants in the community study were 63 SA community members and 12 key informants; in-depth semi-structured interviews involved 30 SA families, 14 White British (WB) families and 37 Healthcare Professionals (HCPs) treating SA children living with asthma; prioritisation workshops involved 145 SA, 6 WB and 37 HCP participants; 30 participants in finalisation workshops. RESULTS: Two key principles were utilised throughout the development of the intervention; community-based participatory research (CBPR) principles and intervention mapping (IM) procedures. The CBPR approach allowed close engagement with stakeholders and generated valuable knowledge to inform intervention development. It accounted for diverse perceptions and experiences with regard to asthma and recognised the priorities of patients and their families/caregivers for service improvement. The 'ACT on Asthma' programme was devised, comprising four arms of an intervention strategy: education and training, clinical support, advice centre and raising awareness, to be co-ordinated by a central team. CONCLUSIONS: The modified IM principles utilised in this study were systematic and informed by theory. The combined IM and participatory approach could be considered when tailoring interventions for other clinical problems within diverse communities. The IM approach to intervention development was however resource intensive. Working in meaningful collaboration with minority communities requires specific resources and a culturally competent methodology.

Men, chronic illness and healthwork: accounts from male partners of women with endometriosis.

Currently dominant in medical discourse, the concept of self-management sees the responsibility for health and illness shift from the state to the individual. However, while this emphasis on individual responsibility and management has burgeoned, the role and status of partners and other family members in the management of chronic illness remains under-theorised. While self-management privileges individual responsibility for the management of chronic illness, the role of partners remains unclear. This paper utilises data from a study of heterosexual couples' experiences of living with the chronic gynaecological condition endometriosis to explore how male partners engage in its day-to-day management. In all, 22 couples participated in in-depth, semi-structured interviews with each partner interviewed separately (n = 44). Data were analysed thematically and dyadically, informed by an interpretivist relational approach. The paper utilises the concept of healthwork to describe the illness work, everyday life work, biographical work and emotion work men engaged in. The paper demonstrates how the conceptual value of healthwork is enhanced by incorporating an analysis of the emotional effort required in managing chronic illness. The paper illustrates the value of investigating the role of partners in managing chronic illness to provide a fuller account of the distributed and relational nature of healthwork.

Increasing uptake of structured self-management education programmes for type 2 diabetes in a primary care setting: a feasibility study.

BACKGROUND: Structured self-management education (SSME) for people with type 2 diabetes mellitus (T2DM) improves biomedical and psychological outcomes, whilst being cost-effective. Yet uptake in the UK remains low. An 'Embedding Package' addressing barriers and enablers to uptake at patient, health care professional and organisational levels has been developed. The aim of this study was to test the feasibility of conducting a subsequent randomised controlled trial (RCT) to evaluate the Embedding Package in primary care, using a mixed methods approach. METHODS: A concurrent mixed methods approach was adopted. Six general practices in the UK were recruited and received the intervention (the Embedding Package). Pseudonymised demographic, biomedical and SSME data were extracted from primary care medical records for patients recorded as having a diagnosis of T2DM. Descriptive statistics assessed quantitative data completeness and accuracy. Quantitative data were supplemented and validated by a patient questionnaire, for which two recruitment methods were trialled. Where consent was given, the questionnaire and primary care data were linked and compared. The cost of the intervention was estimated. An integrated qualitative study comprising ethnography and stakeholder and patient interviews explored the process of implementation, sustainability of change and 'fit' of the intervention. Qualitative data were analysed using a thematic framework guided by the Normalisation Process Theory (NPT). RESULTS: Primary care data were extracted for 2877 patients. The primary outcome for the RCT, HbA1c, was over 90% complete. Questionnaires were received from 423 (14.7%) participants, with postal invitations yielding more participants than general practitioner (GP) prompts. Ninety-one percent of questionnaire participants consented to data linkage. The mean cost per patient for the Embedding Package was £8.94, over a median follow-up of 162.5 days. Removing the development cost, this reduces to £5.47 per patient. Adoption of ethnographic and interview methods in the collection of data was appropriate, and the use of NPT, whilst challenging, enhanced the understanding of the implementation process. The need to delay the collection of patient interview data to enable the intervention to inform patient care was highlighted. CONCLUSIONS: It is feasible to collect data with reasonable completeness and accuracy for the subsequent RCT, although refinement to improve the quality of the data collected will be undertaken. Based on resource use data collected, it was feasible to produce cost estimates for each individual component of the Embedding Package. The methods chosen to generate, collect and analyse qualitative data were satisfactory, keeping participant burden low and providing insight into potential refinements of the Embedding Package and customisation of the methods for the RCT. TRIAL REGISTRATION: ISRCTN, ISRCTN21321635, Registered 07/07/2017-retrospectively registered.

A Feasibility Study of a Randomized Controlled Trial of Asthma-Tailored Pulmonary Rehabilitation Compared with Usual Care in Adults with Severe Asthma.

BACKGROUND: Currently, the acceptability and efficacy of pulmonary rehabilitation for adults with severe asthma is unknown. OBJECTIVE: To investigate the feasibility of performing a randomized controlled trial of asthma-tailored pulmonary rehabilitation (AT-PR) versus usual care (UC). METHODS: Adults with severe asthma were recruited and randomized 2:1 to AT-PR and UC. The primary outcomes were recruitment, retention, and serious adverse event rates. Secondary outcome measures included those for a future trial assessing the feasibility of collecting data. Assessments were performed at baseline, 12 weeks, and 9 months including measures of physical performance, health-related quality of life, and asthma control. A recruitment rate of 30% was estimated with 95% CI of ±7%, a retention rate of 75% ± 14% if we recruited 40 patients to AT-PR, and a serious adverse event rate of 2.5%. RESULTS: Sixty-one (26%) of 238 eligible patients were recruited (38 women; mean age, 54 ± 13 years; body mass index, 32 ± 7 kg/m2; FEV1, 1.9 ± 0.7 L; FEV1/forced vital capacity, 69% ± 11%). Fifty-one patients were randomized to AT-PR (n = 34) and UC (n = 17). The retention rate was 62% for the AT-PR group and 53% for the UC group, with a serious adverse event rate of 3.3% related to the study visits. Overall collection of the outcome measures was feasible. The results of the AT-PR group were suggestive of improvements in exercise performance, health-related quality of life, and asthma control, but the UC group results were either unchanged or worsened. CONCLUSIONS: Both recruitment and retention rates were within the a priori estimated 95% CI. Our results indicate that AT-PR may be efficacious for adults with severe asthma but any future intervention and trial design would need further modifications to improve acceptability and retention rate.

Application of normalisation process theory in understanding implementation processes in primary care settings in the UK: a systematic review.

BACKGROUND: Normalisation Process Theory (NPT) provides a framework to understand how interventions are implemented, embedded, and integrated in healthcare settings. Previous reviews of published literature have examined the application of NPT across international healthcare and reports its benefits. However, given the distinctive clinical function, organisational arrangements and the increasing management of people with a wide variety of conditions in primary care settings in the United Kingdom, it is important to understand how and why authors utilise and reflect on NPT in such settings to inform and evaluate implementation processes. METHODS: A systematic review of peer-reviewed literature using NPT in primary care settings in the United Kingdom (UK) was conducted. Eight electronic databases were searched using replicable methods to identify articles published between January 2012 and April 2018. Data were analysed using a framework approach. RESULTS: Thirty-one articles met the inclusion criteria. Researchers utilised NPT to explore the implementation of interventions, targeting a wide range of health services and conditions, within primary care settings in the UK. NPT was mostly applied qualitatively; however, a small number of researchers have moved towards mixed and quantitative methods. Some variation was observed in the use of NPT constructs and sub-constructs, and whether and how researchers undertook modification to make them more relevant to the implementation process and multiple stakeholder perspectives. CONCLUSION: NPT provides a flexible framework for the development and evaluation of complex healthcare interventions in UK primary care settings. This review updates the literature on NPT use and indicates that its application is well suited to these environments, particularly in supporting patients with long-term conditions and co-morbidities. We recommend future research explores the receipt of interventions by multiple stakeholders and suggest that authors reflect on justifications for using NPT in their reporting.

Conducting dyadic, relational research about endometriosis: A reflexive account of methods, ethics and data analysis.

Despite a growing literature on the value of relational data in studies of social phenomena, individuals still commonly constitute the basic unit of analysis in qualitative research. Methodological aspects of interviewing couples, particularly interviewing partners separately, and of conducting dyadic analysis have received scant attention. This article describes the experience of conducting separate interviews with both partners in 22 heterosexual couples (n = 44) in a study of the impact of the gynaecological condition endometriosis. In order to advance current methodological thinking regarding interviewing couples, we describe the dyadic, relational approach employed in designing the study and our specific method of dyadic analysis. We argue that utilising separate interviews with dyadic analysis rather than conducting joint interviews, while not without its ethical, practical and analytical challenges, offers considerable methodological benefits. Such an approach allows a unique relational insight into the impact of chronic illness on couples and how they navigate chronic illness by illuminating both shared and individual interpretations, experiences, understandings and meanings.

Recipient and donor experiences of known egg donation: implications for fertility counselling.

OBJECTIVE: To explore the experiences of known egg donors and recipients in order to inform counselling practise. BACKGROUND: Relatively little is known about known egg donation as a form of family-building in the UK, and on the experiences of individuals who have sought this form of donation. As such, there is a lack of guidance for fertility counselling in this area. METHOD: This was a cross-sectional, qualitative study. A purposive sample of four recipient women were recruited via a national support group for women experiencing Premature Ovarian Insufficiency (POI). Known egg donors (n = 3) and recipient men (n = 3) were recruited via a snowball sample, as identified by recipient women. In-depth interviews were conducted with participants. Interviews were transcribed and analysed using thematic analysis. RESULTS: Four themes were generated from the data: 1) 'Doing anything': existing relationships as the motivation to donate; 2) 'It was my duty': feelings of obligation to donate and to receive; 3) 'Woman-to-woman': a woman-centred experience; and 4) 'Going through this together': changed versus unchanged relationships. CONCLUSIONS: The study highlights a number of implications in known egg donation, arising from the relationships involved. It is recommended that these implications are considered by infertility counsellors in the provision of counselling, and by those undergoing known egg donation when seeking information and support, before, during and after the donation.

The impact of an intervention to increase uptake to structured self-management education for people with type 2 diabetes mellitus in primary care (the embedding package), compared to usual care, on glycaemic control: study protocol for a mixed methods study incorporating a wait-list cluster randomised controlled trial.

BACKGROUND: Approximately 425 million people globally have diabetes, with ~ 90% of these having Type 2 Diabetes Mellitus (T2DM). This is a condition that leads to a poor quality of life and increased risk of serious health complications. Structured self-management education (SSME) has been shown to be effective in improving glycaemic control and patient related outcome measures and to be cost-effective. However, despite the demonstrated benefits, attendance at SSME remains low. An intervention has been developed to embed SSME called the 'Embedding Package'. The intervention aims to address barriers and enhance enablers to uptake of SSME at patient, healthcare professional and organisational levels. It comprises a marketing strategy, user friendly and effective referral pathways, new roles to champion SSME and a toolkit of resources. METHODS: A mixed methods study incorporating a wait-list cluster randomised trial and ethnographic study, including 66 UK general practices, will be conducted with two intervention start times (at 0 and 9 months), each followed by an active delivery phase. At 18 months, the intervention will cease to be actively delivered and a 12 month observational follow-up phase will begin. The intervention, the Embedding Package, aims to increase SSME uptake and subsequent improvements in health outcomes, through a clear marketing strategy, user friendly and effective referral pathways, a local clinical champion and an 'Embedder' and a toolkit of resources for patients, healthcare professionals and other key stakeholders. The primary aim is, through increasing uptake to and attendance at SSME, to reduce HbA1c in people with T2DM compared with usual care. Secondary objectives include: assessing whether there is an increase in referral to and uptake of SSME and improvements in biomedical and psychosocial outcomes; an assessment of the sustainability of the Embedding Package; contextualising the process of implementation, sustainability of change and the 'fit' of the Embedding Package; and an assessment of the cost-effectiveness of the Embedding Package. DISCUSSION: This study will assess the effectiveness, cost-effectiveness and sustainability of the Embedding Package, an intervention which aims to improve biomedical and psychosocial outcomes of people with T2DM, through increased referral to and uptake of SSME. TRIAL REGISTRATION: International Standard Randomised Controlled Trials Number ISRCTN23474120. Assigned 05/04/2018. The study was prospectively registered. On submission of this manuscript practice recruitment is complete, participant recruitment is ongoing and expected to be completed by the end of 2019.

Patient Perceptions of Living with Severe Asthma: Challenges to Effective Management.

BACKGROUND: The management of severe asthma poses many challenges related to treatment, adherence, and psychosocial morbidity. There is little direct data from the patient perspective to understand and negotiate the complexities of managing severe asthma. OBJECTIVE: To explore the patient perceptions of living with severe asthma and the experience of managing severe asthma, in order to better understand the support that might promote more effective self-management for severe asthma. METHODS: Participants were recruited from a specialist Difficult Asthma Service. Semistructured interviews were conducted by researchers independent of the patient's care. Interviews were transcribed verbatim and inductive thematic analysis was performed. RESULTS: Twenty-nine participants (13 male: mean [standard deviation] age, 49.5 [13.6] years: mean Asthma Control Questionnaire 2.2 [1.2]) participated in an interview. Analysis resulted in 4 major themes describing the experience and challenges to managing severe asthma: understanding of severe asthma, emotional impact of living with severe asthma (subtheme: fear of hospitalization), public perceptions of asthma, and concerns about medications. CONCLUSIONS: Health care professionals need to consider and discuss with patients their perceptions of severe asthma and the relevant treatments; particular attention should focus around education of disease control and actively exploring thoughts around hospitalization. Our data highlight the potential for psychological and social support to enhance self-management by directly addressing the wide-ranging individual challenges patients face. There is also a need for greater public awareness and education about severe asthma to minimize patient distress particularly in the work environment.

Qualitative study to identify ethnicity-specific perceptions of and barriers to asthma management in South Asian and White British children with asthma.

OBJECTIVE: This paper draws on the data from the Management and Interventions for Asthma (MIA) study to explore the perceptions and experiences of asthma in British South Asian children using semi-structured interviews. A comparable cohort of White British children was recruited to identify whether any emerging themes were subject to variation between the two groups so that generic and ethnicity-specific themes could be identified for future tailored intervention programmes for South Asian children with asthma. SETTING: South Asian and White British children with asthma took part in semi-structured interviews in Leicester, UK. PARTICIPANTS: Thirty three South Asian and 14 White British children with asthma and aged 5-12 years were interviewed. RESULTS: Both similar and contrasting themes emerged from the semi-structured interviews. Interviews revealed considerable similarities in the experience of asthma between the South Asian and White British children, including the lack of understanding of asthma (often confusing trigger with cause), lack of holistic discussions with healthcare professionals (HCPs), an overall neutral or positive experience of interactions with HCPs, the role of the family in children's self-management and the positive role of school and friends. Issues pertinent to South Asian children related to a higher likelihood of feeling embarrassed and attributing physical activity to being a trigger for asthma symptoms. CONCLUSIONS: The two ethnicity-specific factors revealed by the interviews are significant in children's self-management of asthma and therefore, indicate the need for a tailored intervention in South Asian children.