#TreatmentResistantDepression: A qualitative content analysis of Tweets about difficult-to-treat depression.

INTRODUCTION: Treatment-resistant depression (TRD) is depression unresponsive to antidepressants and affects 55% of British primary care users with depression. Current evidence is from secondary care, but long referral times mean general practitioners (GPs) manage TRD. Studies show that people with depression use Twitter to form community and document symptoms. However, Twitter remains a largely unexplored space of documented patient experience. Twitter data could provide valuable insights into learning about primary care experiences of TRD. In this study, we explored Twitter comments and conversations about TRD and produced patient-driven recommendations. METHODS: Tweets from UK-based users were collected manually and using a browser extension in June 2021. Conventional content analysis was used to provide an overview of the Tweets, followed by interpretation to understand why Twitter may be important to people with TRD. RESULTS: A total of 415 Tweets were organised into five clusters: self-diagnosis, symptoms, support, small wins and condition experts. These Tweets were interpreted as showing Twitter as a community for people with TRD. People had a collective sense of illness identity and were united in their experiences of TRD. However, users in the community also highlighted the absence of effective GP care, leading users to position themselves as condition experts. Users shared advice from a place of lived experience with the community but also shared potentially harmful information, including recommendations about nonevidence-based medications. CONCLUSIONS: Findings illuminate the benefits of the TRD Twitter community and also highlight that the perception of a lack of knowledge and support from GPs may lead community members to advise nonevidenced-based medications. PATIENT AND PUBLIC CONTRIBUTION: This study was led by a person with lived experience of TRD and bipolar. Two public contributors with mental health conditions gave feedback on our study protocol and results.

Experiences and meaning of loneliness beyond age and group identity.

Research into loneliness has focussed on subpopulations, and in particular those defined by age, identifying specific contextual factors contributing to their experiences. We suggest that the 'essence' of loneliness cannot be fully captured by examining a unitary group and argue for broader and diverse sampling to better understand how loneliness is experienced. Informed by a symbolic interactionist approach, this study aims to elucidate experiences and meaning of loneliness among a heterogeneous group of adults. In depth interviews were conducted with a diverse sample of 37 individuals, aged 18-71 years who had experienced loneliness in the UK. Using thematic analysis, four themes were identified: Loneliness as lacking, loneliness as abandonment, lingering loneliness and the unspoken and trivialised experience of loneliness. Our analysis signals the complexity of loneliness  did not necessarily conform to one-dimensional conceptualisations of the phenomenon. Loneliness is linked to interpersonal relationships, but also associated with participants' roles and identity within society. Thus, society exacerbates and creates loneliness. Implications for the support and provision of loneliness are also discussed.

Transitions for older people with intellectual disabilities and behaviours that challenge others: A rapid scoping review.

BACKGROUND: People with intellectual disabilities and behaviours that challenge others are living longer. This review aimed to explore what is known about the health and social care needs, experiences, service interventions and resources of and for this population as they transition to different care contexts in the UK. METHOD: A rapid scoping review of published and unpublished literature was conducted based on collaborative working with key stakeholders and using systematic methods of data searching, extraction and analysis. RESULTS: Consistent social work support, skilled staff, suitable accommodation, creative engagement with individuals and families to plan ahead, and timely access to quality healthcare are all required to promote successful transitions as people age, and to avoid unwanted/inappropriate transitions at points of crisis. CONCLUSIONS: More research is needed to assess the types of services that this population can and do access as they age, the quality of those services, and the extent to which local commissioners are planning ahead for people with intellectual disabilities and behaviours that challenge others.

The structural basis for high affinity binding of α1-acid glycoprotein to the potent antitumor compound UCN-01.

The α1-acid glycoprotein (AGP) is an abundant blood plasma protein with important immunomodulatory functions coupled to endogenous and exogenous ligand-binding properties. Its affinity for many drug-like structures, however, means AGP can have a significant effect on the pharmokinetics and pharmacodynamics of numerous small molecule therapeutics. Staurosporine, and its hydroxylated forms UCN-01 and UCN-02, are kinase inhibitors that have been investigated at length as antitumour compounds. Despite their potency, these compounds display poor pharmokinetics due to binding to both AGP variants, AGP1 and AGP2. The recent renewed interest in UCN-01 as a cytostatic protective agent prompted us to solve the structure of the AGP2-UCN-01 complex by X-ray crystallography, revealing for the first time the precise binding mode of UCN-01. The solution NMR suggests AGP2 undergoes a significant conformational change upon ligand binding, but also that it uses a common set of sidechains with which it captures key groups of UCN-01 and other small molecule ligands. We anticipate that this structure and the supporting NMR data will facilitate rational redesign of small molecules that could evade AGP and therefore improve tissue distribution.

'Language has been granted too much power'.1,p.1 Challenging the power of words with time and flexibility in the precommencement stage of research involving those with cognitive impairment.

Meaningful and inclusive involvement of all people affected by research in the design, management and dissemination of that research requires skills, time, flexibility and resources. There continue to be research practices that create implicit and explicit exclusion of some members of the public who may be 'seldom heard' or 'frequently ignored'. Our focus is particularly on the involvement of people living with cognitive impairment, including people with one of the many forms of dementia and people with learning disabilities. We reflect especially on issues relating to the precommencement stage of research. We suggest that despite pockets of creative good practice, research culture remains a distinct habitus that continues to privilege cognition and articulacy in numerous ways. We argue that in perpetuating this system, some researchers and the institutions that govern research are committing a form of bureaucratic violence. We call for a reimagining of the models of research governance, funding and processes to incorporate the time and flexibility that are essential for meaningful involved research, particularly at the precommencement stage. Only then will academic health and social science research that is truly collaborative, engaged, accessible and inclusive be commonplace. PUBLIC AND PATIENT CONTRIBUTION: This viewpoint article was written by a research network of academics with substantial experience in undertaking and researching patient and public involvement and codesign work with representatives of the public and patients right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.

Partial or total knee replacement? Identifying patients' information needs on knee replacement surgery: a qualitative study to inform a decision aid.

PURPOSE: For patients with end-stage knee osteoarthritis, joint replacement is a widely used and successful operation to help improve quality-of-life when non-operative measures have failed. For a significant proportion of patients there is a choice between a partial or total knee replacement. Decision aids can help people weigh up the need for and benefits of treatment against possible risks and side-effects. This study explored patients' experiences of deciding to undergo knee replacement surgery to identify information priorities, to inform a knee replacement decision aid. METHODS: Four focus groups were held with 31 patients who were candidates for both partial and total knee replacement surgery. Two focus groups included patients with no prior knee replacement surgery (pre-surgery); two with patients with one knee already replaced and who were candidates for a second surgery on their other knee (post-surgery). Data were analysed using Framework Analysis. RESULTS: Participants described a process of arriving at 'readiness for surgery' a turning point where the need for treatment outweighed their concerns. Referral and personal factors influenced their decision-making and expectations of surgery in the hope to return to a former self. Those with previous knee surgery offered insights into whether their expectations were met. 'Information for decisions' details the practicality and the optimal timing for the delivery of a knee replacement decision aid. In particular, participants would have valued hearing about the experiences of other patients and seeing detailed pictures of both surgical options. Information priorities were identified to include in a decision aid for knee replacement surgery. CONCLUSIONS: Patients' experiences of surgical decision-making have much in common with the Necessity-Concerns Framework. Whilst originally developed to understand drug treatment decisions and adherence, it provides a useful lens to understand decision-making about surgery. The use of a decision aid could enhance decision-making on knee replacement surgery. Ultimately, patients' understanding of the risks and benefits of both surgical options could be improved and in turn, help informed decision-making. The knee replacement decision aid is perceived as a useful tool to be associated with other detailed information resources as recommended.

Face-to-Face Compared With Online Collected Accounts of Health and Illness Experiences: A Scoping Review.

Advocates of online alternatives to face-to-face interviewing suggest online approaches save money and time, whereas others have raised concerns about the quality and content of the resulting data. These issues affect researchers designing and costing their studies and application reviewers and research funders. We conducted a scoping review of English language articles describing the range of online alternative approaches. Furthermore, we systematically identified studies directly comparing online alternatives with face-to-face approaches. Synthesis of these 11 articles (565 participants) suggests that online alternatives should not be viewed as a straightforward replacement for face-to-face, a particularly important finding given the rapid communication changes occurring in the COVID-19 pandemic. When applied with consideration of the evolving evidence on their strengths and weaknesses, online methods may increase the likelihood of obtaining the desired sample, but responses are shorter, less contextual information is obtained, and relational satisfaction and consensus development are lower.

Untimely illness: When diagnosis does not match age-related expectations.

BACKGROUND: We explore the concept of "untimely diagnosis," where the onset of a long-term condition occurs at a life stage which does not conform to traditional expectations, focusing on two conditions (asthma and arthritis) typically associated with a particular life stage (childhood and older adulthood, respectively). Previous literature has focused on the meaning of chronic illness in terms of life history, and the biographical lens has been used in various ways to make sense of the experience. Less attention has been paid to the condition onset when it seems dissonant with chronological age. METHODS: Secondary analysis of two qualitative data sets (total 58 interviews) exploring the experiences of people with adult-onset asthma and young people diagnosed with arthritis. Data from the original interview transcripts relating to diagnosis and symptom recognition were re-analysed using a "candidacy" framework to examine how age and diagnosis intersect. RESULTS: People did not always assert their candidacy for either condition because of pre-conceived expectations around age. Similarly, health professionals sometimes failed to recognize patients' candidacy, instead pursuing "age-plausible" possibilities. In some cases, participants were proactive in suggesting a diagnosis to the health professional where diagnosis was delayed. CONCLUSION: The diagnosis of adult-onset asthma, and arthritis in young people, may be regarded as "untimely." We suggest that being diagnosed with what is perceived to be a "childhood" condition in adulthood, or "an older person's" condition in childhood, may be viewed as a "biographical paradox" and an "untimely breach" to the expected order.

A licence to drive? Neurological illness, loss and disruption.

The sense of freedom and independence that being able to drive generates may be taken for granted by many until it is threatened by illness. Drawing on the 'mobility turn' in social sciences that emphasises the social and emotional significance of the car (Sheller and Urry , ), this article presents secondary analysis of narratives of driving and its significance across four neurological conditions (epilepsy, Parkinson's disease, transient ischaemic attack and motor neurone disease). Taking an interactionist approach we explore how the withdrawal of a driving licence can represent not just a practical and emotional loss of independence, but also loss of enjoyment; of a sense and feeling of 'normal' adulthood and social participation; and of an identity (in some cases gendered) of strength and power. Conversely the ability to keep driving can maintain an unbroken thread of narrative, for example enabling people with speech difficulties to feel and look normal behind the wheel. Moments of pleasure and normality illuminate the importance of examining the micro-strands of disruption illness can cause.

Do we all agree what "good health care" looks like? Views from those who are "seldom heard" in health research, policy and service improvement.

CONTEXT: The aim of this study was to ask whether there are shared ideas about what good health care looks like that apply across different populations and conditions. Do priorities among "seldom heard" groups differ from mainstream views and, if so, how might we understand these differences? DESIGN: Focus groups were recruited with the help of our study patient representatives. Participants discussed and prioritized a set of eight "core components" of good care. We recorded and transcribed the data for thematic analysis. SETTING AND PARTICIPANTS: We recruited people who are seldom heard in health and policy research for separate focus group discussions (one each with illegal drug users, Irish Travellers, migrant workers, young men and learning disabled people). We also ran a reference group of educated, older adults and an online group with people with long-term conditions. RESULTS: There were few differences in what participants thought was important in health care but considerable differences in their expectations that they might personally receive good care. Differences related to participants' previous experiences. The drug users group reported particularly poor experiences and low expectations of good care. DISCUSSION: Differences in what is regarded as an entitlement or privilege in health care underline the persistence of structural and relational differences in how services are experienced. While we can be reassured that core aspects of care are similarly prioritized across different patient groups, including those who are seldom heard, a more intractable challenge remains: how to provide equitable health care for marginalized groups in an unequal society.

Care, Control, and the Electroconvulsive Therapy Ritual: Making Sense of Polarized Patient Narratives.

Despite evidence of short-term effectiveness of ECT (electroconvulsive therapy), both positive and negative patient reports are common. However, research examining these polarized accounts has not adequately elucidated why such divergences occur. We thus sought to examine opposing patient narratives to better understand underlying meanings. Eighteen interviews were conducted with U.K.-based people who had experienced the treatment. Our analysis revealed that the quality of relations with staff, ECT artifacts (e.g., the ECT suite), and perceived outcomes all play a role in divergent accounts. Positive reflections on ECT emerged alongside narratives of trust in staff, comfort with ECT, and perception of sufficient personal control. Conversely, where negative evaluations of ECT predominated, there was anger associated with a lack of control, a belief that ECT made little sense, and was linked to past abuses and/or the unacceptability of side effects. We discuss the implications of our findings for professionals.

Six 'biases' against patients and carers in evidence-based medicine.

BACKGROUND: Evidence-based medicine (EBM) is maturing from its early focus on epidemiology to embrace a wider range of disciplines and methodologies. At the heart of EBM is the patient, whose informed choices have long been recognised as paramount. However, good evidence-based care is more than choices. DISCUSSION: We discuss six potential 'biases' in EBM that may inadvertently devalue the patient and carer agenda: limited patient input to research design, low status given to experience in the hierarchy of evidence, a tendency to conflate patient-centred consulting with use of decision tools; insufficient attention to power imbalances that suppress the patient's voice, over-emphasis on the clinical consultation, and focus on people who seek and obtain care (rather than the hidden denominator of those that do not seek or cannot access care). To reduce these 'biases', EBM should embrace patient involvement in research, make more systematic use of individual ('personally significant') evidence, take a more interdisciplinary and humanistic view of consultations, address unequal power dynamics in healthcare encounters, support patient communities, and address the inverse care law.

Personalised care planning for adults with chronic or long-term health conditions.

BACKGROUND: Personalised care planning is a collaborative process used in chronic condition management in which patients and clinicians identify and discuss problems caused by or related to the patient's condition, and develop a plan for tackling these. In essence it is a conversation, or series of conversations, in which they jointly agree goals and actions for managing the patient's condition. OBJECTIVES: To assess the effects of personalised care planning for adults with long-term health conditions compared to usual care (i.e. forms of care in which active involvement of patients in treatment and management decisions is not explicitly attempted or achieved). SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, PsycINFO, ProQuest, clinicaltrials.gov and WHO International Clinical Trials Registry Platform to July 2013. SELECTION CRITERIA: We included randomised controlled trials and cluster-randomised trials involving adults with long-term conditions where the intervention included collaborative (between individual patients and clinicians) goal setting and action planning. We excluded studies where there was little or no opportunity for the patient to have meaningful influence on goal selection, choice of treatment or support package, or both. DATA COLLECTION AND ANALYSIS: Two of three review authors independently screened citations for inclusion, extracted data, and assessed risk of bias. The primary outcomes were effects on physical health, psychological health, subjective health status, and capabilities for self management. Secondary outcomes included effects on health-related behaviours, resource use and costs, and type of intervention. A patient advisory group of people with experience of living with long-term conditions advised on various aspects of the review, including the protocol, selection of outcome measures and emerging findings. MAIN RESULTS: We included 19 studies involving a total of 10,856 participants. Twelve of these studies focused on diabetes, three on mental health, one on heart failure, one on end-stage renal disease, one on asthma, and one on various chronic conditions. All 19 studies included components that were intended to support behaviour change among patients, involving either face-to-face or telephone support. All but three of the personalised care planning interventions took place in primary care or community settings; the remaining three were located in hospital clinics. There was some concern about risk of bias for each of the included studies in respect of one or more criteria, usually due to inadequate or unclear descriptions of research methods. Physical healthNine studies measured glycated haemoglobin (HbA1c), giving a combined mean difference (MD) between intervention and control of -0.24% (95% confidence interval (CI) -0.35 to -0.14), a small positive effect in favour of personalised care planning compared to usual care (moderate quality evidence).Six studies measured systolic blood pressure, a combined mean difference of -2.64 mm/Hg (95% CI -4.47 to -0.82) favouring personalised care (moderate quality evidence). The pooled results from four studies showed no significant effect on diastolic blood pressure, MD -0.71 mm/Hg (95% CI -2.26 to 0.84).We found no evidence of an effect on cholesterol (LDL-C), standardised mean difference (SMD) 0.01 (95% CI -0.09 to 0.11) (five studies) or body mass index, MD -0.11 (95% CI -0.35 to 0.13) (four studies).A single study of people with asthma reported that personalised care planning led to improvements in lung function and asthma control. Psychological healthSix studies measured depression. We were able to pool results from five of these, giving an SMD of -0.36 (95% CI -0.52 to -0.20), a small effect in favour of personalised care (moderate quality evidence). The remaining study found greater improvement in the control group than the intervention group.Four other studies used a variety of psychological measures that were conceptually different so could not be pooled. Of these, three found greater improvement for the personalised care group than the usual care group and one was too small to detect differences in outcomes. Subjective health statusTen studies used various patient-reported measures of health status (or health-related quality of life), including both generic health status measures and condition-specific ones. We were able to pool data from three studies that used the SF-36 or SF-12, but found no effect on the physical component summary score SMD 0.16 (95% CI -0.05 to 0.38) or the mental component summary score SMD 0.07 (95% CI -0.15 to 0.28) (moderate quality evidence). Of the three other studies that measured generic health status, two found improvements related to personalised care and one did not.Four studies measured condition-specific health status. The combined results showed no difference between the intervention and control groups, SMD -0.01 (95% CI -0.11 to 0.10) (moderate quality evidence). Self-management capabilitiesNine studies looked at the effect of personalised care on self-management capabilities using a variety of outcome measures, but they focused primarily on self efficacy. We were able to pool results from five studies that measured self efficacy, giving a small positive result in favour of personalised care planning: SMD 0.25 (95% CI 0.07 to 0.43) (moderate quality evidence).A further five studies measured other attributes that contribute to self-management capabilities. The results from these were mixed: two studies found evidence of an effect on patient activation, one found an effect on empowerment, and one found improvements in perceived interpersonal support. Other outcomesPooled data from five studies on exercise levels showed no effect due to personalised care planning, but there was a positive effect on people's self-reported ability to carry out self-care activities: SMD 0.35 (95% CI 0.17 to 0.52).We found no evidence of adverse effects due to personalised care planning.The effects of personalised care planning were greater when more stages of the care planning cycle were completed, when contacts between patients and health professionals were more frequent, and when the patient's usual clinician was involved in the process. AUTHORS' CONCLUSIONS: Personalised care planning leads to improvements in certain indicators of physical and psychological health status, and people's capability to self-manage their condition when compared to usual care. The effects are not large, but they appear greater when the intervention is more comprehensive, more intensive, and better integrated into routine care.

On interviewing people with pets: reflections from qualitative research on people with long-term conditions.

There is mounting evidence that pets are associated with physiological, psychological and social benefits for humans. Much of this research has come from western countries, where there have been consistent calls for greater engagement with pet ownership and health. Drawing on a secondary analysis of 61 in-depth interviews with people, or carers of people, with long-term conditions, we explore how pets feature in people's narrative accounts of their experiences. Our findings demonstrate the multifaceted nature of people's relationships with pets, and the embedded and embodied ways in which human-nonhuman interactions are played out in narratives of chronic illness. Our study differs from other work on pets and health in that, by returning to the interview video recordings, we were able to explore the sometimes three-way interactions, the co(a)gency, between participants, pets and researchers. Pets were often presented as important family members, yet the researchers' responses to the presence or talk about pets was often markedly different from their reactions to other household members. We conclude with cautioning against the downgrading of pets in narrative health research. Narrative approaches may invite participants to talk about what is important to them, yet they clearly have limitations in practice.

Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study.

Background: People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives: (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources. Design and methods: Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews (n = 30), survey (n = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living (n = 4); residential/nursing home (n = 2); day activities (n = 1), Shared Lives (n = 2). Fieldwork (20 days per model), interviews (n = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations. Findings: The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers. Conclusions: There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. Limitations: The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources. Future work: Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards. Trial registration: This trial is registered as ISRCTN74264887. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

People with learning disabilities are living longer, but most live with their families, who are also getting older. This is because there are not enough suitable places for people with learning disabilities to live, and family carers worry that the person will not get the right support and have a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life. We focused on people who are labelled with 'behaviours that challenge others'. We read what has been written about this area. We looked for and found examples of excellent support for older people with learning disabilities. Researchers and people with learning disabilities and family carers spent time hanging out with people where they live or spend their days to see what support they get. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, and it means having staff they like and who like them and being supported to be active. However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found that the label of 'behaviours that challenge others' is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We produced resources and made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention to and support for people with learning disabilities as they age.

Unsettling experiences: A qualitative inquiry into young peoples' narratives of diagnosis for common skin conditions in the United Kingdom.

Skin conditions such as eczema and psoriasis are relatively prevalent health concerns in children, adolescents and young adults. Experiences of these dermatology diagnoses in adolescence have hitherto not been the focus of research, perhaps owing to assumptions that these diagnoses are not particularly impactful or intricate processes, events or labels. We draw on a thematic secondary analysis of in-depth interviews with 42 adolescents and young people living in the United Kingdom and, influenced by the sociologies of diagnosis and time, highlight the psychological, emotional, social and temporal complexities involved in their diagnosis experiences. Firstly, we describe how participants remembered, re- and co-constructed their diagnosis experiences during the interview. Secondly, we explore the pace and rhythm of diagnosis, including mis-diagnoses, highlighting the jarring potential for adolescents on being diagnosed, even for conditions typically deemed minor. Thirdly, we consider the ways in which these diagnoses have the capacity to reformulate notions of past, present and future, including projecting into imagined futures and reinterpreting past bodily sensations. Finally, we examine how memories about and the meaning of diagnosis are revisited, revised and potentially replaced as a child or adolescent grows older, and increases their management of their condition and encounters with healthcare professionals. In unsettling an assumption that diagnosis experiences for adolescents of common skin conditions is unproblematic or straightforward, our qualitative analysis critically engages with and contribute to tenets of health research that are of interest to quantitative and qualitative researchers, clinicians and patients.

Disability training for health workers: A global evidence synthesis.

BACKGROUND: Health worker training on disability is a recognized component of achieving high standards of health for people with disabilities, given that health worker's lack of knowledge, stigma, and negative attitudes towards people with disabilities act as barriers to high quality health care. OBJECTIVE: To understand the published literature on training health workers about disability. METHODS: We searched five databases for relevant peer-reviewed articles published between January 2012 and January 2021. Studies that focused on training health care workers to improve knowledge, confidence, self-efficacy, and competence to support people with physical, sensory, or intellectual impairments were included. Data about the details of the intervention (setting, participants, format, impact assessments, etc.) and its effects were extracted. RESULTS: There is an array of highly local tools to train health workers across stages of their training and careers (preservice, in-service, and continuing professional development). Studies involving people with disabilities in the training, community placements, simulations, or interactive sessions were found to be most effective in improving knowledge, confidence, competency, and self-efficacy. CONCLUSIONS: As part of initiatives to build inclusive health systems and improve health outcomes for people with disabilities, health workers around the world need to receive appropriate and evidence-based training that combines multiple methods and involves people with disabilities. To monitor progress on the impact of training, there should also be a standardized measure of impact on core outcomes.

Experiences of treatment-resistant mental health conditions in primary care: a systematic review and thematic synthesis.

BACKGROUND: Most adults fail to achieve remission from common mental health conditions based on pharmacological treatment in primary care alone. There is no data synthesising the reasons. This review addresses this gap through a systematic review and thematic synthesis to understand adults' experiences using primary care for treatment-resistant mental health conditions (TRMHCs). We use the results to produce patient-driven recommendations for better support in primary care. METHODS: Eight databases were searched from inception to December 2020 for qualitative studies reporting research on people's experience with TRMHCs in primary care. We included the following common mental health conditions defined by NICE: anxiety, depression, panic disorder, post-traumatic stress, and obsessive-compulsive disorder. Two reviewers independently screened studies. Eligible studies were analysed using an aggregative thematic synthesis. RESULTS: Eleven studies of 4456 were eligible. From these eleven studies, 4 descriptive themes were developed to describe a cycle of care that people with TRMHCs experienced in primary care. In the first stage, people preferred to self-manage their mental health and reported barriers that prevented them from seeing a GP (e.g., stigma). People felt it necessary to see their GP only when reaching a crisis point. In the second stage, people were usually prescribed antidepressants, but were sceptical about any benefits they had to their mental health. In the third stage, people self-managed their mental health (e.g., by adjusting antidepressant dosage). The fourth stage described the reoccurrence of mental health and need to see a GP again. The high-order theme, 'breaking the cycle,' described how this cycle could be broken (e.g., continuity of care). CONCLUSIONS: People with TRMHCs and GPs could break the cycle of care by having a conversation about what to do when antidepressants fail to work. This conversation could include replacing antidepressants with psychological interventions like talking therapy or mindfulness.

'Internet is easy if you know how to use it': Doing online research with people with learning disabilities during the COVID-19 pandemic.

Background: The coronavirus disease 2019 pandemic changed the way we live, work, interact and do research. Many activities moved online, and digital inclusion became an urgent issue for researchers working with people with learning disabilities and other groups at risk of exclusion. This has generated new questions about how we conduct research and what it means to go into 'the field'. Methods: We discuss our experience working across four qualitative research projects involving 867 participants with learning disabilities, conducted during the coronavirus disease 2019 pandemic. Findings: Moving research online resulted in often-swift adaptations to research designs and practice, bringing new insights and benefits to our studies. The changing circumstances fostered innovation and greater flexibility and contributed to research becoming more accessible to many. However, doing research online also posed new challenges as well as amplified existing ones. Conclusions: The pandemic has made it easier for some people with learning disabilities to participate in research, but more needs to be done to improve the reach and quality of that participation. Researchers should make the process of participation as accessible as possible. It is also their job to question and challenge the conditions that create barriers to participation in research and to look for ways to change these. We make some recommendations on how this can be achieved.