"It's just part of who I am " Living with chronic headache: voices from the CHESS trial, a qualitative study.

BACKGROUND: Between 2015 and 2019 the Chronic Headache Education and Self-management Study (CHESS) developed and tested a supportive self-management approach that aimed to improve outcomes for people with chronic migraine or chronic tension type headache with/without episodic migraine. However, a paucity of qualitative research which explored the lived experiences of people with chronic headache was evidenced. In response, we undertook to explore the experiences of living with chronic headaches of people who participated in the CHESS study. METHODS: We adopted qualitative methodologies, inviting participants in the CHESS study to participate in semi-structured interviews. In phase 1 (feasibility study), a thematic analysis was conducted. In phase 2 (main CHESS trial), interviews were informed by topic guides developed from our learning from the phase 1 interviews. Pen portrait methodology and thematic analysis was employed allowing us to explore the data longitudinally. RESULTS: Phase 1, 15 interviews (10 female) age range 29 to 69 years (median 47 years) revealed the complexities of living with chronic headache. Six overarching themes were identified including the emotional impact and the nature of their headaches. Phase 2, included 66 interviews (26 participants; median age group 50s (range 20s-60s); 20 females. 14 were interviewed at three points in time (baseline, 4 and 12 months) Through an iterative process four overlapping categories of headache impact emerged from the data and were agreed: i) 'I will not let headaches rule my life'; ii) 'Headaches rule my life'; iii) 'Headaches out of control-something needs to change'; and iv) 'Headaches controlled-not ruling my life'. One of these categories was assigned to each pen portrait at each timepoint. The remaining 12 participants were interviewed at two time points during a year; pen portraits were again produced. Analysis revealed that the headache impact categories developed above held true in this sample also providing some validation of the categories. CONCLUSIONS: These data give an insight into the complexities of living with chronic headache. Chronic headache is unpredictable, permeating all aspects of an individual's life; even when an individual feels that their headache is controlled and not interfering, this situation can rapidly change. It shows us that more work needs to be done both medically and societally to help people living with this often-hidden condition. TRIAL REGISTRATION: ISRCTN79708100.

Chronic Headache Education and Self-Management Study (CHESS): a process evaluation.

BACKGROUND: The Chronic Headache Education and Self-Management Study (CHESS) multicentre randomised trial evaluated the impact a group education and self-management support intervention with a best usual care plus relaxation control for people living with chronic headache disorders (tension type headaches or chronic migraine, with or without medication overuse headache). Here we report the process evaluation exploring potential explanations for the lack of positive effects from the CHESS intervention. METHODS: The CHESS trial included 736 (380 intervention: 356 control) people across the Midlands and London UK. We used a mixed methods approach. Our extensive process evaluation looked at context, reach, recruitment, dose delivered, dose received, fidelity and experiences of participating in the trial, and included participants and trial staff. We also looked for evidence in our qualitative data to investigate whether the original causal assumptions underpinning the intervention were realised. RESULTS: The CHESS trial reached out to a large diverse population and recruited a representative sample. Few people with chronic tension type headaches without migraine were identified and recruited. The expected 'dose'of the intervention was delivered to participants and intervention fidelity was high. Attendance ("dose received") fell below expectation, although 261/380 (69%) received at least at least the pre-identified minimum dose. Intervention participants generally enjoyed being in the groups but there was little evidence to support the causal assumptions underpinning the intervention were realised. CONCLUSIONS: From a process evaluation perspective despite our extensive data collection and analysis, we do not have a clear understanding of why the trial outcome was negative as the intervention was delivered as planned. However, the lack of evidence that the intervention causal assumptions brought about the planned behaviour change may provide some insight. Our data suggests only modest changes in managing headache behaviours and some disparity in how participants engaged with components of the intervention within the timeframe of the study. Moving forwards, we need a better understanding of how those who live with chronic headache can be helped to manage this disabling condition more effectively over time. TRIAL REGISTRATION: ISRCTN79708100 .

Bayesian belief network modelling of household food security in rural South Africa.

BACKGROUND: Achieving food security remains a key challenge for public policy throughout the world. As such, understanding the determinants of food insecurity and the causal relationships between them is an important scientific question. We aim to construct a Bayesian belief network model of food security in rural South Africa to act as a tool for decision support in the design of interventions. METHODS: Here, we use data from the Agincourt Health and Socio-demographic Surveillance System (HDSS) study area, which is close to the Mozambique border in a low-income region of South Africa, together with Bayesian belief network (BBN) methodology to address this question. RESULTS: We find that a combination of expert elicitation and learning from data produces the most credible set of causal relationships, as well as the greatest predictive performance with 10-fold cross validation resulting in a Briers score 0.0846, information reward of 0.5590, and Bayesian information reward of 0.0057. We report the resulting model as a directed acyclic graph (DAG) that can be used to model the expected effects of complex interventions to improve food security. Applications to sensitivity analyses and interventional simulations show ways the model can be applied as tool for decision support for human experts in deciding on interventions. CONCLUSIONS: The resulting models can form the basis of the iterative generation of a robust causal model of household food security in the Agincourt HDSS study area and in other similar populations.

Custodians of Information: Patient and Physician Views on Sharing Medical Records in the Acute Care Setting.

In the UK, in the acute in-patient setting, the only information that a patient receives about their medical care is verbal; there is no routine patient access to any part of the medical record. It has been suggested that this should change, so that patients can have real-time access to their notes, but no one has previously explored patient or clinician views on the impact this might have. Semi-structured interviews were conducted with 12 patients and 13 doctors about their experience of information sharing in the context of the acute care setting, and their views on sharing all of the medical records, or a summary note. Interviews were transcribed verbatim, double coded and analyzed using the constant comparative method. Patients were not given written information and did not ask questions even when they wanted to know things. Patients and doctors supported increased sharing of written information, but the purpose of the medical record - and the risks and benefits of sharing it - were disputed. Concerns included disclosing uncertainty, changing what was written, and causing patient anxiety. Benefits included increased transparency. Use of a summary record was welcomed as a way to empower patients, while doctors felt they had a responsibility to curate what information was given and when. A clinical summary for patients would be of benefit to doctors, nurses, patients and their relatives. It should be designed to reflect the needs of all users, and evaluated to consider patient-relevant outcomes and resource implications.

A qualitative exploration of the experiences of community health animation on malaria control in rural Malawi.

BACKGROUND: While great strides have been achieved in fighting malaria through the Roll Back Malaria (RBM) strategy, the recent world malaria report shows an increase in malaria-related deaths compared to previous years. Malaria control tools are efficacious and effective in preventing the disease; however, the human behaviour aspect of the intervention strategies is weak due to heavy reliance on positive human health behaviour. The challenge lies in adoption of control interventions by the target population which, to an extent, may include access to prevention and treatment tools. We present a qualitative assessment of the use of the Health Animator (HA) model for Information, Education and Communication (IEC) to improve adoption and use of malaria control by promoting positive health behaviours. RESULTS: We conducted 3 Focus Group Discussions (FGDs) and 23 individual in-depth interviews (IDIs) with HAs. Each FGD consisted of 8 participants. Data was analysed using QSR International NVivo 10 software. There are four main themes emerging regarding HA experiences. The perceptions include; collaborative work experience, personal motivation and growth, community participation with health animation and challenges with implementation. Results suggest that HAs were pleased with the training as they gained new information regarding malaria, which affected their use of malaria control interventions within their families. Knowledge was well assimilated from the trainings and influenced personal growth in becoming a community leader. Support from the leadership within the village and the health system was important in legitimising the main messages. The community responded positively to the workshops valued the information imparted. The voluntary nature of the work in a poverty-stricken community affected sustainability. CONCLUSIONS: There is need to empower communities with strategies within their reach. Functioning traditional social support structures are a crucial element in sustainability. Voluntarism is also key for sustainability, especially for rural and remote communities with limited sources of income.

U.K. Intensivists' Preferences for Patient Admission to ICU: Evidence From a Choice Experiment.

OBJECTIVES: Deciding whether to admit a patient to the ICU requires considering several clinical and nonclinical factors. Studies have investigated factors associated with the decision but have not explored the relative importance of different factors, nor the interaction between factors on decision-making. We examined how ICU consultants prioritize specific factors when deciding whether to admit a patient to ICU. DESIGN: Informed by a literature review and data from observation and interviews with ICU clinicians, we designed a choice experiment. Senior intensive care doctors (consultants) were presented with pairs of patient profiles and asked to prioritize one of the patients in each task for admission to ICU. A multinomial logit and a latent class logit model was used for the data analyses. SETTING: Online survey across U.K. intensive care. SUBJECTS: Intensive care consultants working in NHS hospitals. MEASUREMENTS AND MAIN RESULTS: Of the factors investigated, patient's age had the largest impact at admission followed by the views of their family, and severity of their main comorbidity. Physiologic measures indicating severity of illness had less impact than the gestalt assessment by the ICU registrar. We identified four distinct decision-making patterns, defined by the relative importance given to different factors. CONCLUSIONS: ICU consultants vary in the importance they give to different factors in deciding who to prioritize for ICU admission. Transparency regarding which factors have been considered in the decision-making process could reduce variability and potential inequity for patients.

Modelling fertility in rural South Africa with combined nonlinear parametric and semi-parametric methods.

BACKGROUND: Central to the study of populations, and therefore to the analysis of the development of countries undergoing major transitions, is the calculation of fertility patterns and their dependence on different variables such as age, education, and socio-economic status. Most epidemiological research on these matters rely on the often unjustified assumption of (generalised) linearity, or alternatively makes a parametric assumption (e.g. for age-patterns). METHODS: We consider nonlinearity of fertility in the covariates by combining an established nonlinear parametric model for fertility over age with nonlinear modelling of fertility over other covariates. For the latter, we use the semi-parametric method of Gaussian process regression which is a popular methodology in many fields including machine learning, computer science, and systems biology. We applied the method to data from the Agincourt Health and Socio-Demographic Surveillance System, annual census rounds performed on a poor rural region of South Africa since 1992, to analyse fertility patterns over age and socio-economic status. RESULTS: We capture a previously established age-pattern of fertility, whilst being able to more robustly model the relationship between fertility and socio-economic status without unjustified a priori assumptions of linearity. Peak fertility over age is shown to be increasing over time, as well as for adolescents but not for those later in life for whom fertility is generally decreasing over time. CONCLUSIONS: Combining Gaussian process regression with nonlinear parametric modelling of fertility over age allowed for the incorporation of further covariates into the analysis without needing to assume a linear relationship. This enabled us to provide further insights into the fertility patterns of the Agincourt study area, in particular the interaction between age and socio-economic status.

The role of experiential knowledge within attitudes towards genetic carrier screening: A comparison of people with and without experience of spinal muscular atrophy.

PURPOSE: Autosomal recessive conditions, while individually rare, are a significant health burden with limited treatment options. Population carrier screening has been suggested as a means of tackling them. Little is known, however, about the attitudes of the general public towards such carrier screening and still less about the views of people living with candidate genetic diseases. Here, we focus on the role that such experience has on screening attitudes by comparing views towards screening of people with and without prior experience of the monogenetic disorder, Spinal Muscular Atrophy. METHODS: An exploratory sequential mixed methods design was adopted. In-depth qualitative interviews were used to develop two surveys. The surveys addressed attitudes towards carrier screening (pre-conceptual and prenatal) for SMA. PARTICIPANTS: 337 participants with SMA experience completed the SMA Screening Survey (UK) and 336 participants with no prior experience of SMA completed the UK GenPop Survey, an amended version of the SMA Screening Survey (UK). RESULTS: The majority of both cohorts were in favour of pre-conception and prenatal carrier screening, however people with experience of type II SMA were least likely to support either. Key differences emerged around perceptions of SMA, with those without SMA experience taking a dimmer view of the condition than those with. CONCLUSION: This study underscores the significance of prior experience with the condition to screening attitudes. It highlights the need for accurate and high-quality educational resources to support any future carrier screening programmes, that particularly in relation to rare genetic disorders like SMA that will fall outside the remit of everyday experience for the majority of the population.

Impairment Experiences, Identity and Attitudes Towards Genetic Screening: the Views of People with Spinal Muscular Atrophy.

Developments in genetics are rapidly changing the capacity and scope of screening practices. However, people with genetic conditions have been under-represented in the literature exploring their implications. This mixed methods study explores the attitudes of people with Spinal Muscular Atrophy (SMA) towards three different population-level genetic screening programmes for SMA: pre-conception, prenatal and newborn screening. Drawing on qualitative interviews (n = 15) and a survey (n = 82), this study demonstrates that more severely affected individuals with early-onset symptoms (Type II SMA), are less likely to support screening and more likely to view SMA positively than those with milder, later onset and/or fluctuating symptoms (Types III/ IV SMA). Indeed, this clinically milder group were more likely to support all forms of screening and view SMA negatively. This paper highlights that screening is a complex issue for people with genetic conditions, and the nature of impairment experiences plays a critical role in shaping attitudes.

Population screening for spinal muscular atrophy: A mixed methods study of the views of affected families.

Autosomal recessive conditions are a significant health burden with few treatments. Population carrier screening has been suggested as a means to tackle them. Little is known about the views of affected families despite the potential for direct impacts on them. Data are presented on attitudes among families affected by Spinal Muscular Atrophy (SMA) toward two population screening programs, pre-conception, and prenatal. Data were gathered through qualitative interviews (n = 36) and a survey (n = 337). Eighty-two survey participants had SMA and 255 were family members. The majority were in favor of screening (75%). Reasons for supporting pre-conception screening support were a belief that it would reduce SMA-related terminations and raise awareness of SMA in the population. For prenatal screening, reasons for support included a belief in the importance of informed decision-making and the need to reduce suffering. Key reasons for non-support of pre-conception screening included concerns about carrier stigmatization and social engineering. For prenatal screening, concerns focused on the collateral loss of high quality of life lives affected by SMA. This study highlights that those affected by SMA are predominantly in favor of screening, although pre-conception screening is most favored. While family members and adults with SMA had largely consistent views, perceptions varied according to the severity (type) of SMA, with those affected by SMA type II the least likely to support screening. These findings suggest that screening for SMA is a complex issue for affected families, underscoring the need to consider and include their views when planning and implementing screening programs. © 2016 Wiley Periodicals, Inc.

Newborn screening for spinal muscular atrophy: The views of affected families and adults.

Spinal muscular atrophy (SMA) is one of the leading genetic causes of infant death worldwide. However, due to a lack of treatments, SMA has historically fallen short of Wilson-Jungner criteria. While studies have explored the acceptability of expanded newborn screening to the general public, the views of affected families have been largely overlooked. This is in spite of the potential for direct impacts on them and their unique positioning to consider the value of early diagnosis. We have previously reported data on attitudes toward pre-conception and prenatal genetic screening for SMA among affected families (adults with SMA [n = 82] and family members [n = 255]). Here, using qualitative interview [n = 36] and survey data [n = 337], we report the views of this same cohort toward newborn screening. The majority (70%) of participants were in favor, however, all subgroups (except adults with type II) preferred pre-conception and/or prenatal screening to newborn screening. Key reasons for newborn screening support were: (1) the potential for improved support; (2) the possibility of enrolling pre-symptomatic children on clinical trials. Key reasons for non-support were: (1) concerns about impact on the early experiences of the family; (2) inability to treat. Importantly, participants did not view the potential for inaccurate typing as a significant obstacle to the launch of a population-wide screening program. This study underscores the need to include families affected by genetic diseases within consultations on screening. This is particularly important for conditions such as SMA which challenge traditional screening criteria, and for which new therapeutics are emerging.

Ultrasound as a technology of reassurance? How pregnant women and health care professionals articulate ultrasound reassurance and its limitations.

The premise that ultrasound technologies provide reassurance for pregnant women is well-rehearsed. However, there has been little research about how this reassurance is articulated and understood by both expectant mothers and health care professionals. In this article, we draw on two qualitative UK studies to explore the salience of ultrasound reassurance to women's pregnancy experiences whilst highlighting issues around articulation and silence. Specifically, we capture how expectant parents express a general need for reassurance and how visualisation and the conduct of professionals have a crucial role to play in accomplishing a sense of reassurance. We also explore how professionals have ambiguities about the relationship between ultrasound and reassurance, and how they subsequently articulate reassurance to expectant mothers. By bringing two studies together, we take a broad perspectival view of how gaps and silences within the discourse of ultrasound reassurance leave the claims made for ultrasound as a technology of reassurance unchallenged. Finally, we explore the implications this can have for women's experiences of pregnancy and health care professionals' practices.

Why do women seek ultrasound scans from commercial providers during pregnancy?

The commercial availability of ultrasound scans for pregnant women has been controversial yet little is known about why women make use of such services. This article reports on semi-structured interviews with women in the UK who have booked a commercial scan, focusing on the reasons women gave for booking commercially provided ultrasound during a low-risk pregnancy. Participants' reasons for booking a scan are presented in five categories: finding out the sex of the foetus; reassurance; seeing the baby; acquiring keepsakes and facilitating bonding. Our analysis demonstrates that women's reasons for booking commercial scans are often multiple and are shaped by experiences of antenatal care as well as powerful cultural discourses related to 'good' parenting and the use of technology in pregnancy. Sociological and public debate about the availability of commercial ultrasound and its social and personal impacts should consider the wider sociocultural context that structures women's choices to make use of such services.

The CHESS trial: protocol for the process evaluation of a randomised trial of an education and self-management intervention for people with chronic headache.

BACKGROUND: Process evaluation is increasingly common alongside complex randomised controlled trials (RCTs). This evaluation helps in understanding the mechanisms of impact and how the study processes were executed, and it includes any contextual factors which may have implications for the trial results and any future implementation. This process evaluation is for the Chronic Headache Education and Self-management Study (CHESS) RCT, which is evaluating an education and self-management group behavioural intervention for people with chronic headache. Chronic headache is defined as headaches which are present for 15 or more days per month. The most common types are chronic migraine and chronic tension type and medication overuse headaches. METHODS: We will use a mixed methods approach. Quantitative data will be taken from routine trial data which will help us to assess the reach of the study; i.e. did we reach those whom we expected and from where? Intervention attendance (dose received) and attrition and qualitative data will augment our understanding about reasons why people may not wish to take part in or failed to attend sessions. Interviews with intervention facilitators and trial participants will gain different perspectives on taking part in the trial. Fidelity will be assessed through listening to audio recordings for adherence to course content and competence of the facilitation of a sample of sessions. DISCUSSION: Our process evaluation will allow us to gain insight into how the trial was delivered, the obstacles and enablers encountered and the possible reasons why the interventions may or may not be effective. TRIAL REGISTRATION: ISRCTN79708100 . Registered on 16 December 2015.

Design considerations in a clinical trial of a cognitive behavioural intervention for the management of low back pain in primary care: Back Skills Training Trial.

BACKGROUND: Low back pain (LBP) is a major public health problem. Risk factors for the development and persistence of LBP include physical and psychological factors. However, most research activity has focused on physical solutions including manipulation, exercise training and activity promotion. METHODS/DESIGN: This randomised controlled trial will establish the clinical and cost-effectiveness of a group programme, based on cognitive behavioural principles, for the management of sub-acute and chronic LBP in primary care. Our primary outcomes are disease specific measures of pain and function. Secondary outcomes include back beliefs, generic health related quality of life and resource use. All outcomes are measured over 12 months. Participants randomised to the intervention arm are invited to attend up to six weekly sessions each of 90 minutes; each group has 6-8 participants. A parallel qualitative study will aid the evaluation of the intervention. DISCUSSION: In this paper we describe the rationale and design of a randomised evaluation of a group based cognitive behavioural intervention for low back pain.

Spreading of components of mood in adolescent social networks.

Recent research has provided evidence that mood can spread over social networks via social contagion, but that, in seeming contradiction to this, depression does not. Here, we investigate whether there is evidence for the individual components of mood (such as appetite, tiredness and sleep) spreading through US adolescent friendship networks while adjusting for confounding by modelling the transition probabilities of changing mood state over time. We find that having more friends with worse mood is associated with a higher probability of an adolescent worsening in mood and a lower probability of improving, and vice versa for friends with better mood, for the overwhelming majority of mood components. We also show, however, that this effect is not strong enough in the negative direction to lead to a significant increase in depression incidence, helping to resolve the seeming contradictory nature of existing research. Our conclusions, therefore, link in to current policy discussions on the importance of subthreshold levels of depressive symptoms and could help inform interventions against depression in high schools.

The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature.

OBJECTIVE: To systematically review the qualitative literature of the lived experience of people with a chronic headache disorder. BACKGROUND: Chronic headaches affect 3%-4% of the population. The most common chronic headache disorders are chronic migraine, chronic tension-type headache and medication overuse headache. We present a systematic review and meta-ethnographic synthesis of the lived experience of people with chronic headache. METHODS: We searched seven electronic databases, hand-searched nine journals and used a modified Critical Appraisal Skills Programme checklist to appraise study quality. Following thematic analysis we synthesised the data using a meta-ethnographic approach. RESULTS: We identified 3586 unique citations; full texts were examined for 86 studies and 4 were included in the review. Included studies differed in their foci: exploring, patient-centred outcomes, chronic headache as a socially invisible disease, psychological processes mediating impaired quality of life, and the process of medication overuse. Initial thematic analysis and subsequent synthesis gave three overarching themes: 'headache as a driver of behaviour' (directly and indirectly), 'the spectre of headache' and 'strained relationships'. CONCLUSION: This meta-synthesis of published qualitative evidence demonstrates that chronic headaches have a profound effect on people's lives, showing similarities with other pain conditions. There were insufficient data to explore the similarities and differences between different chronic headache disorders.

Complex consultations and the 'edge of chaos'.

Complexity theory has attracted considerable attention in recent years, both within medicine and in the wider world. Its themes of uncertainty and non-linearity resonate deeply with the experience of working in general practice. Describing the consultation as a complex, adaptive system provides a coherent theoretical basis for understanding the consultation, which has so far been lacking. Understanding the consultation as a complex, adaptive system offers insights into the consultation of that may prove to be of practical use to clinicians.

Patterns of interaction between factors that enhance or inhibit recovery from chronic low back pain.

PURPOSE: This interview study aimed to capture an account of change in low back pain over time and understand the interaction of known bio-psychosocial risk factors. METHODS: Thirty-four participants from the Back Skills Training (BeST) U.K. trial, evaluating a cognitive behavioural approach intervention for LBP, gave 61 interviews. Semi-structured interviews taken once or twice post intervention explored participants' experiences of LBP and the intervention received. Initial thematic analysis of the data gave themes, which participants spoke about in an integrated way. Rereading of whole transcripts identified interactions between themes, which we classified as helpful or unhelpful to recovery. The team also explored whether there were correlations with Roland and Morris Disability Questionnaire (RMDQ) scores from the main trial. RESULTS: Web diagrams gave a graphic representation of the interactions between factors, which were highly individual and time specific. We identified three categories of webs; dense web (mostly unhelpful), open web (helpful and unhelpful) and sparse web (mostly helpful). These categories correlated with (RMDQ) scores. CONCLUSIONS: Facilitators as well as potential barriers to recovery give added insight when considering psychosocial risk factors. Web categories highlight patterns of interaction between psychosocial factors, which underlie levels of disability. These patterns of interaction may help to guide clinicians in their choice of treatment approaches.

The effect of strategies of personal resilience on depression recovery in an Australian cohort: a mixed methods study.

Strategies of personal resilience enable successful adaptation in adversity. Among patients experiencing depression symptoms, we explored which personal resilience strategies they find most helpful and tested the hypothesis that use of these strategies improves depression recovery. We used interview and survey data from the Diagnosis, Management and Outcomes of Depression in Primary Care 2005 cohort of patients experiencing depression symptoms in Victoria, Australia. A total of 564 participants answered a computer-assisted telephone interview question at 12 months follow-up, about what they found most helpful for their depression, stress or worries. Depressive disorder and severity were measured at annual follow-up using the Composite International Diagnostic Interview and the Patient Health Questionnaire self-rating questionnaire. Using interview responses, we categorised participants as users or not of strategies of personal resilience, specifically, drawing primarily on expanding their own inner resources or pre-existing relationships: 316 (56%) were categorised as primarily users of personal resilience strategies. Of these, 193 (61%) reported expanding inner resources, 79 (25%) drawing on relationships and 44 (14%) reported both. There was no association between drawing on relationships and depression outcome. There was evidence supporting an association between expanding inner resources and depression outcome: 25 per cent of users having major depressive disorder 1 year later compared to 38 per cent of non-users (adjusted odds ratio: 0.59, confidence interval: 0.36-0.97). This is the first study to show improved outcome for depression for those who identify as most helpful the use of personal resilience strategies. The difference in outcome is important as expanding inner resources includes a range of low intensity, yet commonly available strategies.