Dr Christina Jones

Children and young people (CYP) with type 1 diabetes (T1D) are twice as likely to develop disordered eating (T1DE) and clinical eating disorders than those without. This has significant implications for physical and mental health, with some eating disorders associated with repeated diabetic ketoacidosis and higher HbA1c levels, both of which are life threatening. There is currently limited psychological support for CYP and families with T1D but increasingly, policy and practice are suggesting disordered eating in T1D may be effectively prevented through psychological intervention. We describe the development and theoretical underpinnings of a preventative psychological intervention for parents of CYP aged 11-14, with T1D. The intervention was informed by psychological theory, notably the Information Motivation Behaviour Skills model and Behaviour Change Technique Taxonomy. The intervention was co-developed with an expert advisory group of clinicians, and families with T1D. The manualised intervention includes two online group workshops, and supplementary online materials. The intervention continues to evolve, and feasibility findings will inform how best to align the intervention with routine care in NHS diabetes teams. Early detection and intervention are crucial in preventing T1DE, and it is hoped that the current intervention can contribute to improving the psychological and physical wellbeing of young people and families managing T1D.

Much of the research exploring the experiences of family caregivers of people with dementia has focussed on spouses and adult children. It is hypothesised that other family members at different life stages and with different family roles may experience and perceive the caregiving role differently. The objective of the current review was to explore the experiences of grandchildren who provide care to a grandparent with dementia. A systematic search of four databases identified 12 studies which met the inclusion criteria. An assessment of quality was completed for each of the included studies. Grandchildren described dementia-related changes, changes to their role and relationship with their grandparent, multiple impacts of caregiving, influences of other family relationships on caregiving and positive aspects of caregiving. Many of the included studies met most of the quality criteria for the respective methodological design; however, there was some variation in quality and sample across included studies. The review indicates that assessments and interventions to incorporate grandchildren and the wider family system may help to support family carers to continue to provide care for grandparents with dementia. The research and clinical implications and limitations of the review are also considered.

Background: Older adult carers of people who experience psychosis are at increased risk of developing physical and mental health problems due to the compounding factors of supporting their care-recipient and the health changes associated with ageing. Effective interventions exist but can be difficult to access and maintain prolonged engagement. Self-directed writing therapies, frequently referred to as Written Emotional Disclosure (WED), might be a suitable alternative intervention to improve the wellbeing of carers.Methods: This study aimed to determine the feasibility (recruitment, retention and primary outcome completion) and acceptability of a specific WED intervention known as Positive Written Disclosure (PWD). Informal carers of people with psychosis were randomised to PWD, neutral writing or no writing. Quantitative outcomes including positive and negative affect, carer wellbeing, quality of life, depression, anxiety, stress, self-efficacy, leisure time satisfaction as well as health care utilisation were collected at baseline, 1-, 3-, and 6-month assessments. Qualitative feedback was also collected via questionnaire and semi-structured interviews from those randomised to either writing group.Results: We successfully met our progression criteria, recruiting to target and within timeframes whilst attaining 97% retention and 84% primary outcome data completed at 6 months. Carers randomised to the positive writing group described the intervention as enabling them to have a more positive attitude and focus on activities for themselves. Both writing groups described their tasks as providing distraction from caring responsibilities. However, some carers found the narrow positive emotion focus challenging.Conclusions: PWD is a feasible and acceptable intervention for older adult carers of people with psychosis within a community setting. Further refinement of the writing protocol to include choice in type of emotion disclosed in addition to screening for some level of need may be required in future trials to reduce floor/ceiling effects of outcomes which may explain the lack of change observed.

Background Parents of children with food allergies (CwFA) experience reduced quality of life (QoL) and may have reduced access to in-person interventions in the COVID-19 pandemic. This trial developed and evaluated an online, self-help, information provision website, aimed at improving QoL in parents of CwFA. Methods In a single-blinded, randomised controlled trial (RCT), participants were randomised to either receive access to the website or a waiting-list control. At baseline, post-intervention (week 4) and follow-up (week 8), measures of parental food allergy-related QoL, depression, anxiety, stress, intolerance of uncertainty (IU) and self-efficacy were obtained. Results A total of 205 participants were randomised; 97% were females, 91% white and 78% educated ≥ degree level, with a mean age of 38.95 years (SD = 6.89). 44.9% (n = 92) were retained at follow-up. The arms did not significantly differ on any outcome at any time point. For a sub-group of participants above the clinical cut-off for depression at baseline, the intervention may have improved QoL. Participants reported the website content as useful and accessible, but accessed it infrequently. In baseline data, IU and self-efficacy were significantly associated with QoL. Conclusion While the COVID-19 pandemic has encouraged greater provision of online interventions, our RCT suggests this particular website is not suitable for this population in general, although future research could examine its efficacy for depressed parents of CwFA, to increase confidence that the sub-group finding was not a Type 1 error. The baseline data suggest IU and self-efficacy remain potential proximal targets for intervention. Key Message An online, self-help, information provision website, aimed at improving quality of life in parents and carers of children with food allergies, was ineffective. Future interventions of this sort might benefit from greater tailoring to the needs of the particular parents who are accessing them.

Background: Adults often have difficulty instilling eye drops in their own eyes, but little has been documented about the difficulties experienced by parents when administering eye drops to their young children, where the challenges of instillation are accentuated by their inability to cooperate. This qualitative study explores parents’ experiences of administering eye drops to their children as described in online forum discussions and blog posts. Methods: This was an exploratory study using qualitative methods. We thematically analysed the written exchanges between parents participating in online forum discussions and blog posts about the administration of eye drops to their young children. Results: We found 64 forum discussion threads and 4 blog posts, representing 464 unique contributors expressing their experiences of eye drop administration to young children. Three major themes were identified – administration challenges, administration methods and role of health care professionals. Besides describing their children’s distress, parents discussed their own discomfort and anxiety when administering eye drops. Parents used a variety of techniques to facilitate adherence with medication, including restraining the child, role-play, reassurance, distraction, or reward. The ideas exchanged about eye drop administration occasionally included reiteration of professional advice, but were dominated by parents’ own ideas/suggestions; interestingly health care professionals were considered diagnosticians and prescribers, rather than sources of practical advice on administration. Conclusions: Parents struggling to deliver eye drops to their young children may seek advice on how to administer treatment from parental on-line discussion forums. The distress experienced by the young child and their parents is a powerful reminder to clinicians that procedures common and routine in health care may be challenging to parents. The advice given to parents needs to go beyond the instillation of the eye drops, and include advice on child restraint, distraction techniques and allaying distress. Forewarned of the potential difficulties and provided with coping strategies parents can employ when the child resists, could alleviate their own and their child’s distress.

The COVID-19 pandemic raised acute awareness regarding inequities and inequalities and poor clinical outcomes amongst ethnic minority groups. Studies carried out in North America, the UK and Australia have shown a relatively high burden of asthma and allergies amongst ethnic minority groups. The precise reasons underpinning the high disease burden are not well understood, but it is likely that this involves complex gene-environment interaction, behavioural and cultural elements. Poor clinical outcomes have been related to multiple factors including access to health care, engagement with healthcare professionals and concordance with advice which are affected by deprivation, literacy, cultural norms and health beliefs. It is unclear at present if allergic conditions are intrinsically more severe amongst patients from ethnic minority groups. Most evidence shaping our understanding of disease pathogenesis and clinical management is biased towards data generated from white population resident in high-income countries. In conjunction with standards of care, it is prudent that a multi-pronged approach towards provision of composite, culturally tailored, supportive interventions targeting demographic variables at the individual level is needed, but this requires further research and validation. In this narrative review, we provide an overview of epidemiology, sensitization patterns, poor clinical outcomes and possible factors underpinning these observations and highlights priority areas for research.

Objective Carers play an important role within the UK mental health system. Those carers who support persons with psychosis can experience a reduction in their own physical and mental health. As part of the Caring for Caregivers (C4C) trial, we piloted a writing intervention (Positive Written Disclosure) that has been shown to improve wellbeing in other populations. Although we reached our recruitment target, we encountered several barriers that made recruitment slower than anticipated. This paper synthesises the process data collected during the C4C trial that relates to the barriers to recruiting and retaining psychosis carers. Results We encountered four main carer-specific barriers to the recruitment and retention of participants in our study. These were: (1) poor relationship with mental health clinicians, (2) conflicting with the care recipient's (CR) needs, (3) lack of spare time, and (4) lack of services for mental health carers. The interventions to assist carers need to be informed by robust evidence and this requires trials that reach their recruitment targets. By sharing our practical experiences other researchers and clinicians can modify their practices to minimise recruitment difficulties and delay. Trial registration ISRCTN79116352. Retrospectively registered (before the final participant was recruited) on 23rd January 2017

Difficulties associated with Autism Spectrum Disorders can cause considerable impact on personal, familial, social, educational and occupational functioning. Living with a child who has an Autism Spectrum Disorder can therefore pose a challenge to family members, including typically developing siblings. However, it is only in recent years that the experience of typically developing siblings has become a focal point. A systematic review using keywords across six databases was undertaken to summarise qualitative studies that focused on the experience of being a sibling of a child with an Autism Spectrum Disorder. Fifteen studies met inclusion criteria and a thematic synthesis was completed. The synthesis found that having a sibling who has an Autism Spectrum Disorder can impact typically developing sibling's self-identity and personal development in a number of ways. Similarly, interactions with the sibling who has Autism Spectrum Disorders and with other individuals can evoke a myriad of experiences that can both benefit and challenge typically developing siblings. The ability of typically developing siblings to cope with adverse experiences needs to remain a focus. This synthesis concludes that further research is needed to identify which methods are the most effective in supporting typically developing siblings of children with Autism Spectrum Disorders.

We conducted a systematic review to answer the following: (a) Is there any evidence to support increased prevalence of suicidality and self-harm (i.e. self-harm or suicidality) in urban versus rural environments? (b) What aspects of the urban environment pose risk for suicidality and self-harm? Thirty-five studies met our criteria. Our findings reflect a mixed picture, but with a tendency for urban living to be associated with an increased risk of suicidality and self-harm over rural living, particularly for those living in deprived areas. Further research should focus on the clustering and additive effects of risk and protective factors for suicidality and self-harm in urban environments.

Background: Due to an increased risk of sexually transmitted infections (STIs), gay, bisexual and other men who have sex with men (MSM) have been recommended to receive vaccinations against human papillomavirus, meningitis C and hepatitis A/B. This review aimed to compare the rates of vaccine acceptability, uptake and completion, and to identify determinants of vaccine outcomes specific to MSM to inform a theoretical framework. Methods: In January 2020 four databases were explored to identify vaccination behaviours and associated factors among MSM. A narrative systematic review and meta-analysis were performed. Data were synthesised for theoretical modelling. Results: Seventy-eight studies, mostly from the USA, were included. The average vaccine acceptability was 63% (median=72%, range: 30%-97%), vaccine uptake 45% (median=42%, range: 5%-100%) and vaccine completion 47% (median=45%, range: 12%-89%). Six categories of factors associated with vaccination acceptability, uptake and completion were conceptualised: Individual (e.g., demographic and psychosocial); Interpersonal (e.g., peer education); Healthcare provider (e.g., vaccine recommendation); Organisational and practice setting (e.g., routine collection of patient sexual orientation information that is integrated into a clinical decision support system); Community environment (e.g., targeted health promotion campaigns); and National, state and local policy environment (e.g., public health guidelines targeting MSM). Conclusion: Despite overall high levels of acceptability, uptake and completion rates were below targets predicted by cost-effectiveness modelling across all recommended vaccines. These parameters may need to be adjusted for more precise estimations of cost-effectiveness. Addressing the multiple levels of determinants, as outlined in our theoretical framework, will help guide interventions to increase vaccine completion among MSM.

Aims Increasing evidence suggests that children and young people with type 1 diabetes (T1D) are at greater risk of disordered eating compared to children without T1D. Disordered eating in T1D has been linked to impaired well-being, increased health service use, and early mortality. To address this problem, we will co-develop a psycho-education intervention for parents of children and young people with T1D, informed by the Information Motivation Behavioural Skills model. Methods The objective of this study is to assess the feasibility and acceptability of the intervention compared to a waitlist control group using a feasibility randomised controlled trial (RCT) design. We aim to recruit 70 parents of children and young people with T1D (11-14 years), 35 in each arm. Those assigned to the intervention will be invited to participate in two workshops of two hours each. Parents will be asked to complete outcome measures regarding eating habits, diabetes management, as well as a questionnaire based on the Information Motivation Behavioural Skills model which provides a theoretical foundation for the intervention. These will be completed at baseline, 1- month and 3-months post intervention. Children and young people will be asked to complete questionnaires on their eating behaviours at the same time intervals. Parents randomised to receive the intervention will be invited to take part in interviews to feedback on the intervention and research protocol acceptability. Conclusion It is anticipated that the psycho-education intervention aimed at parents will help prevent the development of disordered eating in children and young people with T1D and improve parental wellbeing. The results of this feasibility trial will determine whether this intervention approach is acceptable to families living with T1D, and whether a definitive RCT of intervention effectiveness is justified. Qualitative findings will be used to refine the intervention and study protocols.

Eating disorders (EDs) have an estimated prevalence rate of 1%–5% across Europe. Effective adjunct interventions are needed to support the 20%–40% of families whose recovery requires additional support to first line approaches. This systematic review and meta‐analysis aimed to establish whether multi‐ family therapy (MFT) improves the physical and psychological health of patients and family members. Searches were conducted in PsycINFO, MED-LINE, PubMed, EMBASE, CINAHL, and the Cochrane Library in March 2021. 15 studies (850 patients) met the inclusion criteria. Meta‐analysis demonstrated MFT resulted in significant benefits in weight gain, ED symptoms, patients' and parents' depression symptoms, and parents' negative experiences of caregiving. However, significant improvements were only evident when comparisons were drawn before and after the intervention; these dissipated when MFT was compared to another intervention. There was no evidence MFT improves family functioning, positive aspects of caregiving, nor patient and parental anxiety. Intervention completion rates ranged from 86% to 100% indicating a high level of acceptability. Studies varied with regard to intervention length and structure, follow‐up period, and outcome measures uti-lised; most were rated as moderate or weak in methodological quality. More rigorous and large scale randomised controlled trials are needed to fully assess the effectiveness of MFT.

Research data derived from observational studies are accumulating quickly in the field of allergy and immunology and a large amount of observational studies are published every year. The aim of the present study was to evaluate the adherence to the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist by papers published in the three European Academy of Allergy and Clinical Immunology journals, during the period 2009-2018. To this end, we conducted a bibliographic study of up to eight randomly selected papers per year per Journal. Our literature search resulted in 223 papers. Among those, 80, 80 and 63 records were from Pediatric Allergy and Immunology, Allergy and Clinical and Translational Allergy, respectively; the latter was published only from 2011 on. Prospective, case-control, and cross-sectional designs were described in 88, 43, and 92 papers, respectively. Full reporting of all STROBE items was present in 47.4%, 45.6%, and 41.2% for the cohort, cross-sectional, and case-control studies, respectively. Generally, no time trend in adherence of reporting STROBE items was observed, apart from reporting funding, which increased from 60% in 2009/2010 to more than 90% in 2018. We identified a cluster of STROBE items with low proportions of full reporting constituted by the items on reporting study design in the title and methods, variables types along with their measurement/assessment, bias and confounding, study size, and grouping of variables. It appears that the STROBE checklist is a suitable tool in observational allergy epidemiology. However, adherence to the STROBE checklist appeared suboptimal.

Food allergy (FA) is a source of anxiety which affects the quality of life (QoL) of individuals and their caregivers (1). Furthermore, parental anxiety is a risk factor for anxiety development in children with offspring of anxious parents being seven times more likely to meet the criteria for an anxiety disorder (2). Recommendations have been made to address parental anxiety and its associated restrictive behaviours specifically for children with FA (3). Anxiety in general clinical practice is often addressed using Cognitive Behavioural Therapy (CBT) of which there is some evidence in mothers of children with FA (1,4).

Intensive care patient diaries written by staff and/or relatives are widely used in intensive care units (ICUs) across the world. Although the original aim of the diaries was to support patients in their recovery from ICU, a more recent focus of the literature has been the potential benefit of the diaries to the relatives of patients. Meta-analyses of quantitative studies looking at the impact on the psychological wellbeing of relatives have not consistently found an effect of the diaries, even though qualitative studies suggest that relatives find the diaries to be a useful coping strategy. To evaluate and synthesise qualitative studies looking at the experience of relatives writing in ICU diaries. A systematic review and qualitative synthesis. A structured search using CINAHL, MEDLINE, PsycInfo, Cochrane Central Register of Controlled Trials (CENTRAL), PTSDHubs and Published International Literature Web of Science Conference Proceedings Citation Index - Science and Social Science and Humanities was conducted. All studies published at any time that included qualitative data (including mixed methods studies) about the perceptions of relatives using ICU patient diaries were included. Themes and narrative statements were extracted from included articles and synthesised. Articles were quality assessed using the Critical Appraisal Skills Programme (CASP) qualitative checklist and Mixed Methods Appraisal Tool (MMAT). Sixteen studies were included in the review, thirteen qualitative and three mixed methods articles. The themes identified were: 1. Coping (subthemes: 1.1. Emotion-Focused Coping and 1.2. Problem-Focused Coping) 2. Connection (subthemes: 2.1 Method of Communication and 2.2 Developing and maintaining relationships) 3. Developing a Narrative (subthemes 3.1 Understanding 3.2 Shaping the story 3.3 Remembering). Relatives use the diaries in a variety of ways including as a means of coping, a way of staying connected, as a tool to understand and develop a narrative about the experience. These findings link the use of ICU diaries with literature on written emotional exposure, post-traumatic growth and meaning making. The relationship between a relative's use of the ICU diary, coping strategies and/or post-traumatic growth could be a focus for future quantitative trials. PROSPERO protocol number CRD42020165869

Background: Emerging evidence points to rising levels of psychological distress resulting from the COVID-19 pandemic. There is a need for self-administered, low-cost, and accessible interventions that facilitate wellbeing and growth. Methods: This study used a randomised controlled trial (RCT) design to investigate the effects of a two-week positivity-oriented photography intervention on wellbeing and posttraumatic growth in comparison to a control group. Participants were adults between the ages of 21 and 80 living in the UK recruited between May and August 2020 (n=109). Results: After adjusting for baseline wellbeing, both wellbeing and PTG were significantly higher in the intervention group compared to the control group following intervention completion, with this effect remaining similar at one-month follow-up. Conclusions: The study offers preliminary evidence that a brief self-administered photography intervention could hold therapeutic value.

Background Self-harm is a major public health concern with evidence suggesting that the rates are higher in the United Kingdom than anywhere else in Europe. Increasingly, policy highlights the role of school staff in supporting young people (YP) who are self-harming, yet research indicates that school staff often feel ill-equipped to provide support and address self-harm behaviors. Here, we assess the impact of a bespoke eLearning module for United Kingdom secondary school teachers on teacher’s actual and perceived knowledge of self-harm, and their self-reported confidence in supporting and talking to YP who self-harm. Methods Twenty-one secondary schools across the West Midlands and South East of England were invited to complete a 30-min web-based eLearning module on self-harm in schools. Participants completed pre-and post-intervention measures. Results One-hundred and seventy-three teachers completed the eLearning, and pre-and post-measures. The eLearning significantly enhanced participants’ perceived knowledge, actual knowledge, and confidence in talking to and supporting YP who self-harm. The majority of participants (90.7%) felt that eLearning was a good way to receive training. Conclusion The 30-min eLearning module was rated highly and may be an effective way to increase secondary school teachers’ knowledge of self-harm, and confidence in supporting and talking to YP who self-harm.

The A allele of rs1042713 (Arg16 amino acid) in the beta-2 (β2) adrenoreceptor is associated with poor response to long-acting β2-agonist (LABA) in young people with asthma. Our aim was to assess whether the prescribing of second line controller with LABA or a leukotriene receptor antagonist (LTRA) according to Arg16Gly genotype would result in improvements in pediatric asthma-related quality of life questionnaire (PAQLQ). We performed a pragmatic randomised controlled trial (RCT) a primary care clinical research network covering England and Scotland. We enrolled participants aged 12-18 years with asthma taking inhaled corticosteroids. A total of 241 participants (mean (sd) age 14.7 years (1.91)) were randomised (1:1) to receive personalised care (genotype directed prescribing) or standard guideline care. Following 4-week run-in participants were followed for 12-months. The primary outcome measure was change in PAQLQ. Asthma control, asthma exacerbation frequency and healthcare utilisation were secondary outcomes. Genotype directed prescribing resulted in an improvement in PAQLQ compared to standard care 0.16, (95%CI 0.00-0.31; p=0.049), although this improvement was below the pre-determined clinical threshold of 0.25. The AA genotype was associated with a larger improvement in PAQLQ with personalised standard care 0.42, (95%CI 0.02-0.81; p=0.041). This is the first RCT demonstrating that genotype driven asthma prescribing is associated with a significant improvement in a clinical outcome compared to standard care. Adolescents with the AA homozygous genotype benefited most. The potential role of such β2-adrenoceptor genotype directed therapy in younger and more severe childhood asthma warrants further exploration.

Background The long-term sequelae of coronavirus disease 2019 (Covid-19) in children remain poorly characterised. This study aimed to assess long-term outcomes in children previously hospitalised with Covid-19 and associated risk factors.

Objectives: Parents experiencing mental health difficulties consistent with " personality disorder " , often related to a history of complex trauma, may face increased challenges in parent– child relationships and child socioemotional development. There are no published randomised controlled trials (RCTs) evaluating perinatal parent– child interventions for this population. We evaluated the feasibility and acceptability of undertaking an RCT of the video feedback intervention for positive parenting adapted for perinatal mental health (VIPP-PMH). Design: Feasibility study incorporating a pilot RCT. Methods: Mothers with enduring difficulties in managing emotions and relationships, consistent with a " personality disorder " , and their 6-to 36-month old infants were randomly allocated to receive six sessions of VIPP-PMH (n = 20) or usual care alone (n = 14). Results: 76% of eligible mothers consented to participate. Intervention uptake and completion rates were 95% (≥1 VIPP-PMH session) and 70% (6 sessions), respectively. Follow-up rates were 85% at month 5 and 65% at month

The Fc Fragment of IgE Receptor II (FCER2) is expressed in several cells, such as macrophages, eosinophils, B cells and platelets. Studies have suggested that FCER2 is involved in the regulation of IgE responses, growth and differentiation of T and B cells, cellular adherence and antigen presentation.1, 2 The activation of the receptor results in down-regulation of IgE-mediated immune responses.2 Two studies found that individuals with asthma on inhaled corticosteroids (ICS) with the CC genotype of the rs28364072 polymorphism had a two-fold increased odds of asthma exacerbations and uncontrolled asthma compared with individuals with at least one copy of the T allele (CT/TT).2, 3 While the literature suggests an association between this FCER2 polymorphism and asthma exacerbations while on ICS, it is unclear whether the CC genotype of the rs28364072 polymorphism translates into different prescribing patterns. Thus, we explored the association between the FCER2 polymorphism and increased prescribing of medication for eczema, asthma, and allergic rhinitis, over a decade.

Background Carers of people with psychosis are at a greater risk of physical and mental health problems compared to the general population. Yet, not all carers will experience a decline in health. This predicament has provided the rationale for research studies exploring what factors predict poor wellbeing in carers of people with psychosis. Our study builds on previous research by testing the predictive value of demographic variables on carer wellbeing within a single regression model. Methods To achieve this aim, we conducted secondary analysis on two trial data sets that were merged and recoded for the purposes of this study. Results: Contrary to our hypotheses, only carer gender and age predicted carer wellbeing; with lower levels of carer wellbeing being associated with being female or younger (aged under 50). However, the final regression model explained only 11% of the total variance. Conclusions Suggestions for future research are discussed in light of the limitations inherent in secondary analysis studies. Further research is needed where sample sizes are sufficient to explore the interactive and additive impact of other predictor variables.

Written Emotional Disclosure (WED) is a self-directed, writing intervention. Treatment effects post-WED vary between studies, prompting research into which variables promote the largest improvements. Thus far, research has focussed on the frequency of certain linguistic properties of the writing, and subjective stress-related ratings. This study tests the feasibility of using an objective coding framework for stress typology to categorise WED extracts and explores whether any characteristics of the stress described were associated with intervention outcomes. WED extracts from a randomised controlled trial of patients with asthma were coded using an objective stress typology framework. The contents of the WED extracts were reviewed to ascertain whether the experience met the DSM 5 definition for trauma, involved abuse, and was experienced directly or vicariously. Also analysed were the degree of upheaval and upset associated with the event described, together with the time of the event, and number of events written about. Correlational analyses indicated that improvements in asthma-related outcomes were associated with writing about experiences that occurred in childhood, constituted abuse, or caused greater upheaval (all ps

Objectives: Depression in older adults is assessed using measures validated in the general adult population. However, such measures may be inappropriate in the elderly due to the similarities between ageing and the symptoms of depression. This article discusses whether these measures are fit for the purpose and the implications of using inappropriate tools. Methods: A commentary on measuring depression in older adults. Results: Depression symptoms may be mistaken for signs of ageing. Several measures of depression include items that may have a physical cause and thus generate measurement error. Those studies that have assessed the psychometric properties of depression measures in older adults have failed to conduct appropriate assessments of discriminant validity. Discussion: Research is needed to determine whether the conceptual similarity between some symptoms of depression and the effects of ageing translate to factorial similarity. If so, there may be a need for a specific depression measure for older adults that prioritises psychological symptoms.

Personalized medicine has the potential to greatly benefit healthcare, but may also bring unintended complexities to the doctor-patient consultation. Delivering the right intervention, to the right patient, at the right time is highly desirable, but in the process we must ensure that technological advancement does not erode the traditional relationship between patient and doctor. To date the interpersonal dimensions of personalized medicine have been neglected. However, in this chapter we speculate on how personalized medicine may impact the doctor–patient relationship. Unintended consequences of pharmacogenomics may include loss of trust in health professionals, poorer adherence to lifestyle changes together with the distress arising from unwanted findings. At a societal level there could emerge a two-tier medical service, widening health inequalities. For maximum benefit, the implementation of pharmacogenomics must be incorporated into clinical care in ways that strengthen our professional relationship with our patients, and not to weaken them.

The integration of Personalized medicine (PM) into mainstream healthcare will only be successful if the public understands and supports this change. The aim was to understand the public perception of the barriers and facilitators towards the use of PM. A systematic review of the literature was conducted within six databases from 2006 to 2018. Twenty-one studies with 9507 participants were included. The key themes were familiarity and willingness to use PM, perceived benefits and perceived risks of PM. The review shows that the public is generally enthusiastic about the introduction of PM, although this should be interpreted with cautious optimism due to participants having a limited familiarity of the underlying principles of PM. The study defines areas where progress can be made to enhance this understanding and address legitimate concerns.

Background Detecting neonatal heart rate rapidly and accurately at birth is essential if resuscitation is required. The Neo-Sense prototype provides a quick, non-invasive method to measure neonatal heart rate at birth based on electric potential sensing technology. The study aimed to inform the prototype design process by exploring the required features and usability of this novel device among healthcare professionals. Methods: Face-to-face,semi-structured interviews were conducted with healthcare professionals involved in the immediate care of babies at birth: paediatricians, midwives and neonatal nurses. Interviews were audio-recorded and subsequently transcribed verbatim. Two independent researchers coded and extracted the emerging categories and performed a thematic content analysis. Results: In total, 21 participants were interviewed, 7 from each professional group. Participants expressed a positive attitude towards the novel prototype. The three main themes extracted were anticipated limitations, advantages and suggestions for development and usage. Participants preferred a device that is easy to use and attach, one which is positioned in a mattress or pad, maintaining also the option of being mobile. Education was considered to have a key role in addressing staff anxiety. The ideal features most frequently mentioned were speed of assessment, reliability and accuracy. Conclusions: The study enabled a better understanding of the perceived barriers and facilitators to developing a new heart rate monitoring device. The development of a quick and accurate device would have immense implications for clinical practice and the potential to improve neonatal mortality and morbidity.

Background: There are currently 1.1 million young people estimated to have type 1 diabetes (T1D) across the world. A diagnosis of T1D impacts not only the children’s lives but also the parent’s. Aim: To understand the experiences of parents raising a child with T1D. Methods: For inclusion, studies had to report qualitative data on parents' experiences of raising a child with a diagnosis of T1D. Parents included mothers, fathers or any other primary caregivers. Eleven databases were systematically searched for relevant articles. Studies were quality assessed and study characteristics extracted. The data was thematically synthesised. Results: Thirty two studies met inclusion. Thematic synthesis yielded, two analytic themes; ‘adjusting to a new reality’ and ‘navigating appropriate T1D support’. The five descriptive themes that contributed to these were ‘distressing diagnostic experience’, ‘change of life routine’, ‘enablers and barriers to support from others’, ‘reconstruction of family dynamics’ and ‘psychological impact over time’. Conclusions: Difficulties parents encounter in support received from school and healthcare professionals are highlighted. Parents’ mental health needs should be attended to throughout T1D clinic appointments. Future research should explore fathers' experiences, as well as characteristics (such as employment status, education, relationship status and underlying mental health issues) which may effect parental experience.

Little is known about which quality of life measure best captures the lived experience of people with a chronic skin condition. The purpose of this study was to explore patients’ views on the Dermatology Life Quality Index (DLQI) and Skindex-29. Participants were adults (n = 28) with a diagnosis of eczema or psoriasis who completed the DLQI and the Skindex-29 before being interviewed about the content and format of these questionnaires. Interviews were analysed using content analysis. Participants were generally satisfied with length and layout of both questionnaires. However, the majority preferred the Skindex-29 for its ease of understanding, use of a longer recall period and incorporation of items on a variety of emotions. Participants reported both questionnaires failing to incorporate important aspects of their lives, for instance impact on professional relationships. Participants voiced limitations in both measures but overall felt Skindex- 29 better captured their lived experience.

Background Studies have identified that food allergy (FA) in children is related to poorer caregiver quality of life (QoL). However, it is unclear which interventions are most effective at improving outcomes for caregivers of children with FA. This review aimed to identify and determine the efficacy, acceptability and quality of interventions for caregivers of children with FA. Methods A systematic search of four databases was conducted to identify studies evaluating any intervention that targeted wellbeing and support in caregivers of children with FA. Studies were not excluded based on design and were rated for quality using the mixed method appraisal tool (MMAT) and the Cochrane risk of bias tool for randomised controlled trials (RCTs). Results Fifteen studies met inclusion; eight studies used a pre‐test post‐test design, four used a post‐test design, two were RCTs and one a case‐control design. Seven studies were educational interventions, five were psychological, and three involved peer/professional support. All interventions had high participant acceptability; some evidence for cognitive behavioural interventions in supporting mothers was observed. Educational interventions tended to be associated with improvements in FA knowledge. With exception of three studies, most studies were assessed as poor or moderate in terms of quality. Conclusion There is a paucity of high‐quality research evaluating interventions to improve outcomes in parents of children with FA. Limited evidence suggest that cognitive behavioural interventions could benefit some mothers, but this has not been tested in other populations. Future research should use methodologically sound designs with validated outcome measures.

Background Anxiety and depression affect a significant number of children and young People (CYP) and can have a far reaching and long-lasting impact. Cognitive-behavioural (CB) interventions can be effective for treating anxiety and depression in CYP but are difficult to access. Recent government policy in England seeks to train a non-traditional graduate workforce to deliver a range of CB interventions for mild-moderate anxiety and depression to CYP, in community settings. Method This practice-based evaluation aimed to estimate the effectiveness of CB interventions delivered by post-graduate trainees undertaking training in a range of CB interventions for mild-moderate anxiety and depression whilst on placement in schools or community Child and Adolescent Mental Health Services (CAMHS). Self and parent-reported routine outcome measures (ROMS) were completed pre and post-intervention, including measures of symptom severity, symptom impact and goal achievement. Results Significant improvements were demonstrated across all self and parent-reported measures post-intervention, with mean scores falling firmly in the non-clinical range, a significant reduction in the proportion of CYP in the clinical range on measures, and predominantly medium to large effect sizes. Conclusion Results are promising in terms of the capacity to train a graduate workforce to deliver a range of low-intensity CB interventions to CYP experiencing mild-moderate depression or anxiety-based difficulties in either CAMHS or school settings, increasing capacity across the system. The current practice-based evaluation also supports the potential effectiveness of current training models/programmes. Further research is needed in terms of long-term outcomes and to compare outcomes between settings, interventions, and demographic groups.

Objective: The difficulties adults have using inhaler devices is well documented but much less is known about how parents administer inhaler devices to young children and the difficulties experienced. The purpose of this article is to explore the underlying concepts and practical issues that parents encounter in administering inhaled asthma medications to their young children. Methods: This is a qualitative study using applied thematic analysis on parental written discourses from asynchronous online discussion forums on the topic of administration and use of asthma inhaler devices to young children. Results: “At a loss of what to do” summarizes the experiences parents described when administering inhaler devices to their young children. Parents describe the problems, the situations, the emotions, the decisions, and the confusion they face. They struggle with their child’s resistance and the associated conflict, describing their own and their child’s distress. Results highlight the coping strategies used in administration, how parents decide whether to use coercive measures or not, their help-seeking endeavors, together with the assurance they give to themselves and others after administration. Conclusion: The online discussions highlight parents’ distress, lack of preparedness, and understanding of administering inhaler devices to young children. While the prevalence of the problem cannot be estimated from our data, it illustrates a need for some healthcare professionals to review their own knowledge and skills in administration of inhaled medication to younger patients, and their provision of patient and family centered care.

Objective: Carers play an important role within the UK mental health system. Those carers who support persons with psychosis can experience a reduction in their own physical and mental health. As part of the Caring for Caregivers (C4C) trial, we piloted a writing intervention (Positive Written Disclosure) that has been shown to improve wellbeing in other populations. Although we reached our recruitment target, we encountered several barriers that made recruitment slower than anticipated. This paper synthesises the process data collected during the C4C trial that relates to the barriers to recruiting and retaining psychosis carers. Results: We encountered four main carer-specific barriers to the recruitment and retention of participants in our study. These were: (1) poor relationship with mental health clinicians, (2) conflicting with the care recipient’s (CR) needs, (3) lack of spare time, and (4) lack of services for mental health carers. The interventions to assist carers need to be informed by robust evidence and this requires trials that reach their recruitment targets. By sharing our practical experiences other researchers and clinicians can modify their practices to minimise recruitment difficulties and delay. Trial registration ISRCTN79116352. Retrospectively registered (before the final participant was recruited) on 23rd January 2017

Asthma affects 300 million people across all age‐groups and ethnicities and is the most common chronic condition affecting children. In the UK, the health care costs associated with asthma are estimated at £1.1 billion, however this amount typically excludes some societal costs (e.g. absence from work to care for children). The total number of days missed from school in England in the 2017/18 academic year was 59.1 million of which 54.7% were due to illness although the reasons for those illness‐related absences are unknown.

Background: Children with suspected allergies can be tested for IgE sensitivities with in vivo or in vitro testing, but parents’ and childrens’ experiences of these different allergy test modalities have not been studied. Objective: To investigate parents’ and childrens’ experiences and views of allergy testing (Skin Prick Testing (SPT) and allergen-specific IgE blood tests). Methods: Qualitative study of children and their parents attending a paediatric allergy clinic. Semi-structured interviews were conducted by telephone using an interview guide that explored their experience of allergy testing. Interviews were digitally recorded and transcribed verbatim. Thematic content analysis was performed. Results: 16 parents and 6 children were interviewed. The characteristics of skin prick tests particularly valued were the immediacy and visibility of results, which enabled testing and interpretation to be achieved within a single clinic appointment. In vitro testing offered simplicity and speed, with only a single puncture site and procedural speed. Some perceived it to be a superior test as it was a laboratory-based test. Parental accounts of in vitro testing often included reference to their own discomfort, as well as their young child’s discomfort as they were restrained for venepuncture. Conclusion and clinical relevance: Several areas for improvement in allergy testing service provision were highlighted, particularly a need for greater information in advance about what will happen in the allergy clinic to reduce anxiety and misunderstandings. Also, SPT with an already identified allergen can cause concern and distress as it appeared to contradict previous instructions given for allergen avoidance.

Achieving hepatitis C virus (HCV) elimination by 2030 requires an increased linkage to care for people who inject drugs (PWID). Project ITTREAT was established to mitigate barriers to HCV care by providing an integrated service within a local drug and alcohol treatment centre. This study aimed to explore the experiences of clients and staff involved in Project ITTREAT and assess the facilitators and barriers to a community‐based HCV service. Between October 2014 and April 2016, drug and alcohol treatment attendees were interviewed using one‐to‐one semi‐structured interviews. Drug and alcohol treatment staff took part in focus groups. All data were recorded, transcribed verbatim and analysed using thematic content analysis. Fifteen drug and alcohol treatment attendees with current/previous HCV infection were interviewed, and 15 staff members contributed across two focus groups. Drug and alcohol treatment staff and attendees reported that Project ITTREAT facilitated access to HCV care by mitigating previous negative hospital‐based experiences. Other key facilitators were positive narratives around HCV care, and drug and alcohol treatment attendees being well engaged in their drug/alcohol recovery. Barriers included a lack of stability in drug and alcohol treatment attendees, negative discourse around testing/treatment and stigma associated with attending the drug and alcohol treatment to access HCV treatment in some who had successfully achieved drug rehabilitation. Our findings indicate the positive impact of an integrated and personalized community‐based service delivered by a dedicated hepatitis nurse. This played a crucial role in reducing barriers to HCV care for PWID. Our work also highlights areas for future investment including non–DAT‐based community services and increasing awareness of new treatments amongst this cohort.