Professor Christina Jones


Professor in Clinical Health Psychology
PhD CPsychol AFBPsS FHEA
+44 (0)1483 684518

About

Areas of specialism

Adherence; Allergy; Asthma; Behaviour change; Diabetes; Evidence synthesis; Health services research; Long term conditions; Physical and psychological health comorbidities ; Psychological interventions; Research methods

University roles and responsibilities

  • Director of Research, School of Psychology
  • Open Research Champion

    My qualifications

    2005
    BA Social Psychology
    University of Sussex
    2007
    MSc Health Psychology
    University of Sussex
    2012
    PhD Psychology Applied to Medicine
    Brighton & Sussex Medical School
    2018
    PGCert Low Intensity Psychological Interventions for Children & Young People
    University of Sussex

    Affiliations and memberships

    British Psychological Society
    CPsychol, AFBPsS
    British Society for Allergy & Clinical Immunology
    Allied Health
    European Academy of Allergy and Clinical Immunology
    Member of Paediatrics Interest Group and Working Group in Epidemiology
    Higher Education Academy
    Fellow of the Higher Education Academy

    Research

    Research interests

    Supervision

    Postgraduate research supervision

    Teaching

    Publications

    Delia Ciobotaru, Christina Jane Jones, Roi Cohen Kadosh, Ines Violante, Mark Cropley (2024)“Too Much of a Burden”: Lived Experiences of Depressive Rumination in Early Adulthood, In: Journal of Counseling Psychology American Psychological Association

    Rumination is an established transdiagnostic factor in mental illness, but there remains a significant gap in understanding the subjective experiences of those affected by it. This study explored the lived experiences of depressive rumination in early adulthood, a population notably susceptible to its effects. We interviewed 20 participants aged between 18-35 years using a semi-structured approach and generated five distinct but interconnected themes using reflective thematic analysis. The first theme delved into recurrent narratives of past traumas and unresolved pain, with participants unable to move on from their past. The second theme illustrated how participants, due to real or perceived pressure, often equated their self-worth with their ability to meet expectations, leading to a distorted self-view and diminished self-esteem. The third theme captured the relentless pursuit of mental peace, with tranquillity remaining ever elusive despite the frequent use of distraction. The fourth theme highlighted the profound isolation stemming from internalised mental health stigma, with participants grappling with fears of being perceived as burdensome and facing rejection from their close ones. Finally, the fifth theme underscored the far-reaching and interconnected repercussions of rumination on mental, emotional, and physical health, and individuals’ ability to achieve their life goals. These findings emphasise the intertwined nature of psychological, physiological, and social risk factors for the development and maintenance of rumination, advocating for a holistic treatment approach to rumination, and paving the way for more timely, tailored care.

    Nina Seylanova, Christina J. Jones, Anastasia Chernyavskaya, Natalia Degtyareva, Aigun Mursalova, Ali Ajam, Lin Xiao, Khazhar Aktulaeva, Philipp Roshchin, Polina Bobkova, Olalekan Lee Aiyegbusi, Anbarasu Theodore Anbu, Christian Apfelbacher, Ali Akbar Asadi-Pooya, Liat Ashkenazi-Hoffnung, Caroline Brackel, Danilo Buonsenso, Wouter de Groote, Janet V Diaz, Daniele Dona, Jon Genuneit, Audrey Dunn Galvin, Helen Goss, Sarah E Hughes, Krutika Kuppalli, Laura A Malone, Sammie McFarland, Dale M Needham, Nikita Nekliudov, Timothy R Nicholson, Carlos R Oliveira, Nicoline Schiess, Terry Y Segal, Louise Sigfrid, Claire Thorne, Susanne Vijverberg, John O Warner, Wilson Milton Were, Paula R Williamson, Daniel Munblit (2024)Core Outcome Measurement Set for Research and Clinical Practice in Post COVID-19 Condition (Long COVID) in Children and Young People: An International Delphi Consensus Study "PC-COS Children", In: European Respiratory Journal63(2) European Respiratory Society

    The COVID-19 pandemic substantially impacted different age groups, with children and young people (CYP) not exempted. Many have experienced enduring health consequences. Presently, there is no consensus on the health outcomes to assess in CYP with post COVID-19 condition. Furthermore, it is unclear which measurement instruments are appropriate for use in research and clinical management of CYP with post-COVID-19. To address these unmet needs, we conducted a consensus study, aiming to develop a core outcome set (COS) and an associated core outcome measurement set (COMS) for evaluating post-COVID-19 condition in CYP. Our methodology comprised of two phases. In phase 1 (to create a COS), we performed an extensive literature review and categorisation of outcomes, and prioritised those outcomes in a two-round online modified Delphi process followed by a consensus meeting. In phase 2 (to create the COMS), we performed another modified Delphi consensus process to evaluate measurement instruments for previously defined "core outcomes" from phase 1, followed by an online consensus workshop to finalise recommendations regarding the most appropriate instruments for each core outcome. In phase 1, 214 participants from 37 countries participated, with 154 (72%) contributing to both Delphi rounds. The subsequent online consensus meeting resulted in a final COS which encompassed seven critical outcomes: fatigue; post-exertion symptoms; work/occupational and study changes; as well as functional changes, symptoms, and conditions relating to cardiovascular, neuro-cognitive, gastrointestinal, and physical outcomes. In phase 2, 11 international experts were involved in a modified Delphi process, selecting measurement instruments for a subsequent online consensus workshop where 30 voting participants discussed and independently scored the selected instruments. As a result of this consensus process, four instruments met a priori consensus criteria for inclusion: "PedsQL multidimensional Fatigue scale" for "fatigue"; "PedsQL Gastrointestinal symptom scales" for "gastrointestinal"; "PedsQL Cognitive Functioning Scale" for "Neuro-cognitive" and "EQ5D family" for "physical functioning". Despite proposing outcome measurement instruments for the remaining three core outcomes ("cardiovascular", "post-exertional malaise", "work/occupational and study changes"), a consensus was not achieved. Our international, consensus-based initiative presents a robust framework for evaluating post-COVID-19 condition in CYP in research and clinical practice a rigorously defined COS and associated COMS. It will aid in the uniform measurement and reporting of relevant health outcomes worldwide.

    Hector Rojas-Anaya, Akshat Kapur, Graham Roberts, Damian Roland, Atul Gupta, Michaela Lazner, Jane Bayreuther, John Pappachan, Christina Jones, Stephen Bremner, Fleur Cantle, Paul Seddon (2024)High Flow humidified oxygen as an early intervention in children with acute severe asthma: protocol for a feasibility randomised controlled trial (Preprint), In: JMIR research protocols JMIR Publications

    Background: Acute severe asthma (ASA) is a leading cause of hospital attendance in children. Standard first line therapy consists of high dose inhaled bronchodilators plus oral corticosteroids. Treatment for children who fail to respond to first line therapy is problematic: use of intravenous agents is inconsistent and side effects are frequent. High flow humidified oxygen (HiFlo) is widely used in respiratory conditions, and is increasingly being used in ASA, but with little evidence for its effectiveness. A well-designed, adequately powered RCT of HiFlo in ASA is urgently needed, and to plan such an RCT, feasibility data are required. We describe the protocol of a feasibility study designed to fill this knowledge gap. Objective: The objectives were to establish whether a full randomised controlled trial (RCT) of early HiFlo in children with ASA can be conducted successfully and safely, whether recruitment using deferred consent is practicable, and to define appropriate outcome measures and sample size for definitive RCT. The underlying hypothesis is that early HiFlo in ASA will reduce the need for more invasive treatments, allow faster recovery and discharge from hospital, and in both these ways reduce distress to children and their families. Methods: We carried out a feasibility randomised controlled trial with deferred consent to assess use of early HiFlo in children aged 2 to 11 years with acute severe wheeze not responding to ‘burst’ therapy (high dose inhaled salbutamol ± ipratropium). Children with PRAM score 5 or more after ‘burst’ were randomised to commence HiFlo or follow standard care. Candidate primary outcomes assessed were: treatment failure requiring escalation, and time to meeting hospital discharge criteria. Patient and parent experience were also assessed by questionnaire and telephone interview. Results: The trial opened to recruitment in February 2020, but was then paused for 15 months due to the COVID pandemic. The trial reopened at the lead site in July 2021 and opened at the other 3 sites during 2022. Recruitment was completed in June 2023. Conclusions: This feasibility RCT of early HiFlo in ASA in children recruited to target despite major disturbance due to the COVID pandemic. The data are currently being analysed and will be published separately. Clinical Trial: Registered with ISRCTN registry. ISRCTN Number 78297040 https://doi.org/10.1186/ISRCTN78297040

    Laura Leach, Helen Smith, Clare Brown, Marc Davies, Christina Jones (2018)Young people's views on the design of adrenaline auto-injectors: A qualitative study, In: Journal of allergy & therapy9(1)271 Omics Publishing Group

    Background: Young people’s compliance with carriage of adrenaline auto-injectors (AAI) may be as low as 41%, yet we lack research exploring their preferences regarding these devices.\ud \ud Objective: This qualitative study explored young people’s ideas about AAI design and features which may facilitate their carriage and use.\ud \ud Methods: Young people aged 13-18 years prescribed an AAI for severe allergic reaction were invited to participate in in-depth, semi-structured, face-to-face interviews about AAI design. Interviews were recorded, transcribed verbatim and analyzed using thematic content analysis.\ud \ud Results: From 23 interviews, seven major themes were identified: accessibility and carriage, comprehensibility of\ud instructions, indication of correct administration, safety, speed of administration, visibility and identification and\ud precise drug delivery. Young people made several suggestions for how AAIs may be adapted to improve carriage, including reduced size to enable pocket-carriage. Comprehensibility was thought to be enhanced by the use of pictographic instructions and audio-prompts to encourage prompt and accurate administration. Needle guards were seen as beneficial to reduce needle phobia, prevent accidental injury and provide reassurance that the device had\ud been administered. Young people were conflicted between wanting a device which enabled discreet carriage, versus\ud an AAI which was bold and clearly identifiable as a medical device in case of emergency.\ud \ud Conclusion: This study identified key AAI features important to young people, together with design issues deterring day-to-day carriage of AAIs and their emergency, time-pressured usage. We demonstrated considerable\ud scope for AAI design modifications to improve young peoples’ perception of devices and facilitate their carriage and\ud use.

    Rebecca Knibb, Christina Jane Jones, Linda J. Herbert, Cassandra Screti (2024)Psychological support needs for children with food allergy and their families: A systematic review, In: Pediatric Allergy and Immunology35(3)e14108 Wiley

    This systematic review aimed to review the evidence for psychological support for children with food allergies and their families, identify effective psychological interventions , and highlight the support needs for this group. A systematic search was undertaken across six databases (up to October 2023). Articles were checked by three reviewers for inclusion. Study data were extracted, and quality was assessed using the Mixed Methods Appraisal Tool. A narrative synthesis was undertaken. A total of 11 papers were included (n = 838 participants). Intervention types were based on cognitive behavioral therapy (CBT; n = 7); psycho-education (n = 1); peer mentoring (n = 1); self-regulation theory (n = 1); and coping (n = 1). Two interventions were for children only, three were for children and parents and six for parents only. Cognitive behavioral therapy-based interventions with highly anxious parents or children or those facilitated by a psychologist showed significant improvements with moderate-to-large effect sizes. The one self-help CBT-based online program showed no effects. Other intervention types reported mainly trends in improvement due to small sample sizes. Most interventions were aimed at supporting children or parents in day-today management of food allergy, measuring outcomes such as quality of life, self-efficacy, anxiety, worry, and depression. One intervention was designed to assist with oral im-munotherapy outcomes. The majority of the studies had small sample sizes and were feasibility or proof-of-concept studies. Available research evidence points to effectiveness of facilitated CBT-based interventions for those that have high food allergy-related anxiety, but as many studies have small sample sizes and few report effect sizes, no firm conclusions can yet be drawn. A stepped care approach is likely to be useful for this population. Research using large interventional designs, particularly for children and adolescents, are needed.

    Priyamvada Paudyal, Paul Hine, Alice Theadom, Christian J. Apfelbacher, Christina J. Jones, Janelle Yorke, Matthew Hankins, Helen E. Smith (2014)Written emotional disclosure for asthma, In: Written emotional disclosure for asthma (Protocol) Wiley

    Background Psychological stress has been widely implicated in asthma exacerbation. Evidence suggests that written emotional disclosure, an intervention that involves writing about traumatic or stressful experiences, helps to reduce stress and promote physical and psychological well-being. Written emotional disclosure may have a role in the management of asthma. Objectives This review aims to determine the effectiveness of written emotional disclosure for people with asthma, specifically, to assess: 1. overall efficacy of emotional disclosure compared with emotionally neutral writing on self reported quality of life in people with asthma; 2. overall efficacy of emotional disclosure compared with emotionally neutral writing on objective measures of health outcome in people with asthma; and 3. comparative efficacy of different types of emotional disclosure for people with asthma. Search methods Trials were identified from the Cochrane Airways Group Specialised Register of trials, CENTRAL, MEDLINE, EMBASE, CINAHL, AMED and PsycINFO. The latest search was conducted in January 2014. Selection criteria Randomised controlled trials published in any language comparing written emotional disclosure intervention versus a control writing (emotionally neutral) intervention in participants with asthma were included in the review. Data collection and analysis Two review authors independently assessed studies against predetermined inclusion criteria and extracted the data. Corresponding authors were contacted when necessary to provide additional information. Main results Four studies, involving a total of 414 participants, met the inclusion criteria. Three studies were conducted in adult participants and one in adolescents. The average age of participants ranged from 14 to 43 years. The trials lasted between two months and 12 months. The interventions were based on Pennebaker's method. The risk of bias across most domains of the studies was generally considered to be low, however three of four studies were considered at high risk of bias due to lack of assessor blinding and one study was at high risk of bias for selective reporting. The interpretation of these studies was limited by diverse outcome measurements, measurement tools, control group techniques, and number and/or times of follow-up. A pooled result from the four studies, including a total of 146 intervention and 135 control participants, indicated uncertain effect in forced expiratory volume in one second (FEV1) % predicted between the disclosure group and the control group (mean difference (MD) 3.43%, 95% confidence interval (CI) -0.61% to 7.47%; very low-quality evidence) at

    Alice Theadom, Helen E. Smith, Janelle Yorke, Matthew Hankins, Christian J. Apfelbacher, Christina J. Jones, Robert Horne, Richard Bowskill, Anthony J. Frew (2009)Written emotional disclosure for asthma (Protocol), In: Written emotional disclosure for asthma John Wiley & Sons Inc

    This is the protocol for a review and there is no abstract. The objectives are as follows: The review aims to determine the effectiveness of written emotional disclosure for people with asthma. 1. To assess the overall efficacy of emotional disclosure compared to emotionally neutral writing in people with asthma on self reported quality of life. 2. To assess the overall efficacy of emotional disclosure compared to emotionally neutral writing in people with asthma on objective measures of health outcome. 3. To assess the comparative efficacy of different types of emotional disclosure for people with asthma.

    Josephine P. Riddle, Helen Smith, Christina Jones (2016)Does written emotional disclosure improve the psychological and physical health of caregivers? A systematic review and meta-analysis, In: Behaviour research and therapy80pp. 23-32 Elsevier

    There are 5.8 million caregivers providing support to the infirm, disabled or elderly in the United Kingdom. Caregivers experience adverse physical and mental health outcomes and increased mortality. Low cost, effective interventions are needed to increase the wellbeing of caregivers. Written emotional disclosure (WED) has been shown to improve health in a range of populations. This systematic review and meta-analysis aimed to establish whether WED improves the psychological and physical health of caregivers. Searches were conducted in Medline, EMBASE, CINAHL, BNI, PsycINFO, Cochrane Library from 1986 to 2015. Ten trials investigating WED (625 participants) met the inclusion criteria. Results from four studies (n=118) indicated that WED reduces trauma (SMD=-0.46, 95% CI -0.82, -0.09). Data from three studies (n=102) suggest that WED improves general psychological health (SMD=-0.46, 95% CI -0.86, -0.06). There was no evidence that WED improves depression, anxiety, physical symptoms, quality of life or burden. Observations suggest WED may be more effective for caregivers of less than 5 years. Studies were highly heterogeneous in regards to caregiver age, relationship to care recipient, impairment of care recipient, follow up period and outcome measures, with high or unclear bias often observed. More rigorous RCTs, with clearly described interventions and standardised outcome measures, are needed to confirm these findings.

    Anastasia Demidova, Karl Philipp Drewitz, Parisut Kimkool, Nikolina Banjanin, Vladyslava Barzylovich, Erna Botjes, India Capper, Mary Anne R Castor, Pasquale Comberiati, Emma E Cook, Joana Costa, Derek Chu, Michelle M Epstein, Audrey Dunn Galvin, Frédéric Girard, Mattia Giovannini, Michael A Golding, Matthew Greenhawt, Despo Ierodiakonou, Ekaterina Khaleva, Christina J. Jones, Rebecca Knibb, Melahat Sedanur Macit-Çelebi, Douglas P Mack, Isabel Mafra, Mary Marchisotto, Dragan Mijakoski, Nikita Nekliudov, Cevdet Özdemir, Nandinee Patel, Ekaterina Pazukhina, Jennifer L P Protudjer, Pablo Rodríguez Del Rio, Jelena Roomet, Patrick Sammut, Ann-Marie Malby Schoos, Anita Fossaluzza Schopfer, Fallon Schultz, Nina Seylanova, Isabel Skypala, Martin Sørensen, Sasho Stoleski, Eva Stylianou, Julia Upton, Willem van de Veen, Jon Genuneit, Robert J Boyle, Christian Apfelbacher, Daniel Munblit (2024)Core Outcome Set for IgE-mediated food allergy clinical trials and observational studies of interventions: International Delphi consensus study 'COMFA', In: Allergy (Copenhagen) Wiley

    IgE-mediated food allergy (FA) is a global health concern with substantial individual and societal implications. While diverse intervention strategies have been researched, inconsistencies in reported outcomes limit evaluations of FA treatments. To streamline evaluations and promote consistent reporting, the Core Outcome Measures for Food Allergy (COMFA) initiative aimed to establish a Core Outcome Set (COS) for FA clinical trials and observational studies of interventions. The project involved a review of published clinical trials, trial protocols and qualitative literature. Outcomes found as a result of review were categorized and classified, informing a two-round online-modified Delphi process followed by hybrid consensus meeting to finalize the COS. The literature review, taxonomy mapping and iterative discussions with diverse COMFA group yielded an initial list of 39 outcomes. The iterative online and in-person meetings reduced the list to 13 outcomes for voting in the formal Delphi process. One more outcome was added based on participant suggestions after the first Delphi round. A total of 778 participants from 52 countries participated, with 442 participating in both Delphi rounds. No outcome met a priori criteria for inclusion, and one was excluded as a result of the Delphi. Thirteen outcomes were brought to the hybrid consensus meeting as a result of Delphi and two outcomes, 'allergic symptoms' and 'quality of life' achieved consensus for inclusion as 'core' outcomes. In addition to the mandatory reporting of adverse events for FA clinical trials or observational studies of interventions, allergic symptoms and quality of life should be measured as core outcomes. Future work by COMFA will define how best to measure these core outcomes.

    Jennifer L P Protudjer, Helen Brough, Christina Jane Jones, Mary Marchisotto, Linda Herbert, Caity Roleston, Rebecca Knibb (2024)Patient-reported outcomes in food allergy: Speaking the same language to address some of the GAPS, In: Clinical and experimental allergy Wiley
    Katherine E Wakelin, Rebecca K Read, Nicola O’Donnell, Marisa Baker, Rose‐Marie Satherley, Rose Stewart, Christina J Jones (2023)Integrating conversations about disordered eating in children and young people into routine type 1 diabetes care: a practical guide, In: Practical diabetes (2011)40(4)pp. 11-17 John Wiley & Sons, Ltd

    A higher proportion of children and young people (CYP) with type 1 diabetes (T1D) present with disordered eating compared to CYP without T1D. Due to the complexities of T1D management in addition to eating disorder treatment, it is essential to discuss T1D and Disordered Eating (T1DE) with families to screen early and frequently. This enables those most vulnerable to be identified and treated early. The aim of this paper was to: (1) identify the barriers for health care professionals (HCPs) communicating with families about T1DE; and (2) identify practical ways to overcome these barriers. This paper discusses qualitative data from interviews with 10 parents about how they would like conversations about T1DE to be facilitated by HCPs. All parents had a child aged 11–14 with T1D and were recruited through the PRIORITY trial. Four main barriers to communicating about T1DE were identified. These were: (1) parents fearing that conversation about T1DE will increase the likelihood of T1DE developing; (2) psychology not being integrated into routine care; (3) concerns about sensitive communication around the topic of weight; and (4) parents feeling overwhelmed. Practical suggestions for ways in which HCPs can overcome these barriers are discussed. The paper provides a practical guide for HCPs to help them facilitate conversations about T1DE with families in order to allow earlier detection, prevention and intervention of disordered eating within this population. Copyright © 2023 John Wiley & Sons.

    CHRISTINA J JONES, Tom Nadarzynski, Miles Frost, Danny Miller, Christopher W. Wheldon, Brenton M. Wiernik, Huachun Zou, Daniel Richardson, Laura A.V. Marlow, Helen Smith, Carrie Llewellyn (2021)Vaccine acceptability, uptake and completion amongst men who have sex with men: A systematic review, meta-analysis and theoretical framework, In: Vaccine Elsevier

    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.

    Tom Ruffles, Christina J Jones, Colin Palmer, Steve Turner, Jonathan Grigg, Roger Tavendale, Fiona Hogarth, Petra Rauchhaus, Kristina Pilvinyte, Romanie Hannah, Helen Smith, Roberta Littleford, Brian Lipworth, Somnath Mukhopadhyay (2021)Asthma prescribing according to Arg16Gly beta-2 genotype: A randomised trial in adolescents, In: The European Respiratory Journal57(3)

    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.

    Megan P. Harrington, Rose‐Marie Satherley, Mary John, Nicola O’Donnell, Rebecca Read, Katherine Wakelin, Christina J. Jones (2023)Reliability and validity of a parent-reported screening tool for disordered eating in children and young people with type 1 diabetes, In: Diabetic medicinepp. e15256-e15256

    Abstract Background There is a high prevalence and complex overlap between type 1 diabetes (T1D) and disordered eating. However, screening for disordered eating in children and young people (CYP) with T1D is not routinely conducted, with reluctance reported by both professionals and parents. This study aimed to validate a parent‐reported version of a validated disordered eating screening tool for CYP with T1D (the Diabetes Eating Problems Survey‐Revised; DEPS‐R). Methods The existing DEPS‐R was adapted for parent use. 89 parents of CYP with T1D aged 11‐14 years completed the parent‐reported DEPS‐R and other questionnaires related to demographics, child eating behaviours and parental wellbeing. CYP of parents were invited to participate with 51 CYP completing the validated CYP‐reported DEPS‐R for comparison. Results The parent‐reported DEPS‐R demonstrated good internal consistency (Cronbach's α = 0.89). Moderate to good inter‐rater reliability was found between the parent‐reported DEPS‐R and CYP‐reported DEPS‐R (ICC 0.746, 95% CI = 0.554‐0.855, p

    Chrissie Jones, J. Mabbitt, E. Kissling, K. Gilchrist, T. Scanlon, G. Thomas, E. Wooler, R. McFarlane, S. Mukhopadhyay (2020)Measuring the proportion of and reasons for asthma-related school absence in England, In: Clinical and Experimental Allergy Wiley

    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.

    Chrissie J. Jones, Rebecca Read, Nicola O'Donnell, Katherine Wakelin, Mary John, Simon S. Skene, Rose Stewart, Lucy Hale, Debbie Cooke, Shankar Kanumakala, Rose-Marie Satherley (2023)PRIORITY Trial: Results from a feasibility randomised controlled trial of a psychoeducational intervention for parents to prevent disordered eating in children and young people with type 1 diabetes, In: Diabetic medicinee15263 Wiley

    Aims: Children and young people (CYP) with type 1 diabetes (T1D) are at increased risk of disordered eating. This study aimed to determine the feasibility and acceptability of a novel, theoretically informed, two-session psychoeducational intervention for parents to prevent disordered eating in CYP with T1D.Methods: Parents of CYP aged 11-14 years with T1D were randomly allocated to the intervention or wait-list control group. Self-reported measures including the Diabetes Eating Problem Survey-Revised (DEPS-R), Problem Areas in Diabetes Parent Revised (PAID-PR), Child Eating Behaviour Questionnaire subscales (CEBQ), Warwick Edinburgh Mental Wellbeing Scale (WEMWBS), clinical outcomes (e.g. HbA1c, BMI, medication and healthcare utilisation) and process variables, were collected at baseline, 1-and 3-month assessments. Acceptability data were collected from intervention participants via questionnaire.Results: Eighty-nine parents were recruited, which exceeded recruitment targets, with high intervention engagement and acceptability (

    Clare Phillips, Margaret O'Sullivan, Jasmine Schulkind, Christina J Jones, Sumita Verma (2021)Authors’ reply to letter: In support of community-based hepatitis C treatment with triage of people at risk of cirrhosis to specialist care, In: Journal of viral hepatitis28(1)pp. 219-220
    Clare Phillips, Jasmine Schulkind, Margaret O'Sullivan, Natalie Edelman, Helen E. Smith, Sumita Verma, Christina J. Jones (2019)Improving access to care for people who inject drugs: Qualitative evaluation of project ITTREAT—An integrated community hepatitis C service, In: Journal of Viral Hepatitis Wiley

    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.

    Ismail M Osmanov, Ekaterina Spiridonova, Polina Bobkova, Aysylu Gamirova, Anastasia Shikhaleva, Margarita Andreeva, Oleg Blyuss, Yasmin El-Taravi, Audrey DunnGalvin, Pasquale Comberiati, Diego G Peroni, Christian Apfelbacher, Jon Genuneit, Lyudmila Mazankova, Alexandra Miroshina, Evgeniya Chistyakova, Elmira Samitova, Svetlana Borzakova, Elena Bondarenko, Anatoliy A Korsunskiy, Irina Konova, Sarah Wulf Hanson, Gail Carson, Louise Sigfrid, Janet T Scott, Matthew Greenhawt, Elizabeth A Whittaker, Elena Garralda, Olivia V Swann, Danilo Buonsenso, Dasha E Nicholls, Frances Simpson, Christina Jones, Malcolm G Semple, John O Warner, Theo Vos, Piero Olliaro, Daniel Munblit (2022)Risk factors for post-COVID-19 condition in previously hospitalised children using the ISARIC Global follow-up protocol: a prospective cohort study, In: The European respiratory journal59(2)

    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. This is a prospective cohort study of children (≤18 years old) admitted to hospital with confirmed COVID-19. Children admitted between 2 April 2020 and 26 August 2020 were included. Telephone interviews used the International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC) COVID-19 Health and Wellbeing Follow-up Survey for Children. Persistent symptoms (>5 months) were further categorised by system(s) involved. 518 out of 853 (61%) eligible children were available for the follow-up assessment and included in the study. Median (interquartile range (IQR)) age was 10.4 (3-15.2) years and 270 (52.1%) were girls. Median (IQR) follow-up since hospital discharge was 256 (223-271) days. At the time of the follow-up interview 126 (24.3%) participants reported persistent symptoms, among which fatigue (53, 10.7%), sleep disturbance (36, 6.9%) and sensory problems (29, 5.6%) were the most common. Multiple symptoms were experienced by 44 (8.4%) participants. Risk factors for persistent symptoms were: older age "6-11 years" (OR 2.74, 95% CI 1.37-5.75) and "12-18 years" (OR 2.68, 95% CI 1.41-5.4), and a history of allergic diseases (OR 1.67, 95% CI 1.04-2.67). A quarter of children experienced persistent symptoms months after hospitalisation with acute COVID-19 infection, with almost one in 10 experiencing multisystem involvement. Older age and allergic diseases were associated with higher risk of persistent symptoms at follow-up.

    Rose-Marie Satherley, Cassie Hazell, Christina J. Jones, Paul Hanna (2022)A Systematic Review of the Effects of Urban Living on Suicidality and Self-Harm in the UK and Ireland, In: Journal of Urban Health99(3)pp. 385-408 Springer

    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.

    K. Midtbo, C. J. Jones, M. Kapasa, B. Vwalika, H. Rabe (2022)Barriers to implementation of placental transfusion of babies at birth in Zambia, In: African journal of reproductive health26(2)pp. 58-67 Womens Health & Action Research Centre

    Delayed cord clamping (DCC) and umbilical cord milking (CM) have many benefits. However, a previous study done in Zambia showed that it was not a common practice among midwives. This study investigated possible barriers to DCC and CM, at the University Teaching Hospital in Lusaka. This was a qualitative study. A convenience sample was chosen, and snowball sampling was used. The midwives were interviewed using semi-structured interviews. Burnard's method of thematic content analysis was used. Through 14 interviews it became clear that the midwives were aware of DCC and used it whenever possible. The participants reported that the main barriers were the high workload and a variation in knowledge. A lack of facilities, such as heaters and resuscitation equipment in the delivery room also led to earlier cord clamping. The midwives were motivated to continue improving the routines. They expressed a need for more training as well as equipment and resources to facilitate DCC.

    Patrick Nyikavaranda, Marija Pantelic, Chrissie J Jones, Priyamvada Paudyal, Alice Tunks, Carrie Llewellyn (2023)Barriers and facilitators to seeking and accessing mental health support in primary care and the community among female migrants in Europe: a “feminisms” systematic review, In: International journal for equity in health22(1)196 BioMed Central

    Abstract Background Recent years have seen record levels of migration to Europe. Female migrants are at heightened risk of developing mental health disorders, yet they face barriers to accessing mental health services in their host countries. This systematic review aims to summarise the barriers and facilitators to accessing mental health support for female migrants in Europe. Methods The review follows PRISMA guidelines, and the protocol was pre-published on PROSPERO. Six electronic databases were searched: CINAHL, Global Health Database, Medline, PsycARTICLES, PsycINFO and Web of Science. Thematic analysis was undertaken on the identified studies. A feminist quality appraisal tool was applied. Results Eight qualitative, six quantitative and five mixed methods studies were identified. Barriers included a lack of information, stigma, religious and cultural practices and beliefs, and a lack of consideration of gender-specific needs within the health system. Gender-sensitive services, supportive general practitioners and religious leaders facilitated access. Conclusions The design of mental health research, services, policies, and commissioning of support for migrants must consider female migrant needs. Mental health support services must be culturally aware and gender sensitive. Registration The review protocol was registered on the International Prospective Register of Systematic Reviews (PROSPERO, registration number CRD42021235571.

    CHRISTINA J JONES, Nicola O’Donnell, MARY JOHN, DEBORAH DENISE COOKE, Rose Stewart, LUCY HALE, Simon S. Skene, Shankar Kanumakala, MEGAN PAIGE HARRINGTON, Rose-Marie Satherley (2021)PaRent InterventiOn to pRevent dIsordered eating in children with TYpe 1 diabetes (PRIORITY): Study protocol for a feasibility randomised controlled trial, In: Diabetic medicine John Wiley & Sons

    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.

    Nicola O’Donnell, ROSE-MARIE SATHERLEY, MARY JOHN, Debbie Cooke, LUCY HALE, Rose Stewart, CHRISTINA J JONES (2022)Development and Theoretical Underpinnings of the PRIORITY Intervention: A Parenting Intervention to Prevent Disordered Eating in Children and Young People With Type 1 Diabetes, In: Frontiers in Clinical Diabetes and Healthcare3822233 Frontiers Media S.A

    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.

    Patricia Soares, Katy Fidler, Jessie Felton, Christina J Jones, Roger Tavendale, Anke Hövels, Stephen Bremner, Colin N. A Palmer, Somnath Mukhopadhyay (2021)An FCER2 polymorphism is associated with increased oral leukotriene receptor antagonists and allergic rhinitis prescribing, In: Clinical and experimental allergy Wiley

    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 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.

    CHRISTINA J JONES, Priyamvada Paudyal, R West, Adel H Mansur, Nicola Jay, Nick Makwana, Sarah Baker, Mamidipudi T Krishna (2022)Burden of allergic disease among ethnic minority groups in high-income countries, In: Clinical and experimental allergy52(2)pp. 604-615 Wiley

    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.

    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.

    Rebecca Knibb, Lily Hawkins, Cassandra Screti, MH Gowland, Mamidipudi T Krishna, George Du Toit, Christina J. Jones (2024)Risk assessment behaviour when eating out in adults with food hypersensitivity, In: Clinical and translational allergy14(2)e12336 John Wiley and Sons Inc

    Background Food hypersensitivity (FHS) management requires daily risk assessments of all food and drinks consumed to prevent unpleasant and potentially fatal adverse reactions. Most research has focussed on food allergy in children and families. Little is known about the impact on adults or those with other FHS, such as food intolerance or coeliac disease. This study assessed differences in practices and risk assessment behaviours when eating out for adults with FHS. Methods Adult UK residents (N = 930; 820 females, 90 males; 95% White; mean age 50 years [±16.6SD]), with food allergy (18%), food intolerance (23%) coeliac disease (44%) or multiple FHS (15%) completed an online survey. Results Adults checked information to identify foods causing a reaction always or most of the time when eating out. However, adults with food intolerance reported checking significantly less often than adults with other FHS (all ps < 0.001). Adults reporting more severe FHS, medical rather than self-diagnosis of FHS, previous anaphylaxis, had called an ambulance or been in hospital due to a reaction checked information significantly more often (all ps < 0.001), but were also less confident in the information provided (all ps < 0.05). Adults with allergy, coeliac disease or multiple FHS were also less confident in written and verbal information provided than those with food intolerance (p < 0.01). The type of FHS, greater perceived severity of FHS and having a medical diagnosis consistently predicted risk assessment behaviours when eating out (all ps < 0.001). Conclusion Clinicians, patients and the food industry should be aware that the type of FHS, patient-perceived severity and past experience of reactions affect risk assessment behaviours when eating out. This should be considered when providing clinical advice and emergency plans.

    ROSE-MARIE SATHERLEY, CHRISTINA J JONES, MARY JOHN (2022)Development and Evaluation of an eLearning Training Module to Improve United Kingdom Secondary School Teachers’ Knowledge and Confidence in Supporting Young People Who Self-Harm, In: Frontiers in education (Lausanne)7889659 Frontiers Media S.A

    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.

    Megan P. Harrington, Rose‐Marie Satherley, MARY JOHN, Nicola O’Donnell, Rebecca Read, Katherine Wakelin, Christina Jane Jones (2023)Reliability and validity of a parent‐reported screening tool for disordered eating in children and young people with Type 1 diabetes, In: Diabetic medicinepp. e15256-e15256 John Wiley

    Abstract Background There is a high prevalence and complex overlap between type 1 diabetes (T1D) and disordered eating. However, screening for disordered eating in children and young people (CYP) with T1D is not routinely conducted, with reluctance reported by both professionals and parents. This study aimed to validate a parent‐reported version of a validated disordered eating screening tool for CYP with T1D (the Diabetes Eating Problems Survey‐Revised; DEPS‐R). Methods The existing DEPS‐R was adapted for parent use. 89 parents of CYP with T1D aged 11‐14 years completed the parent‐reported DEPS‐R and other questionnaires related to demographics, child eating behaviours and parental wellbeing. CYP of parents were invited to participate with 51 CYP completing the validated CYP‐reported DEPS‐R for comparison. Results The parent‐reported DEPS‐R demonstrated good internal consistency (Cronbach's α = 0.89). Moderate to good inter‐rater reliability was found between the parent‐reported DEPS‐R and CYP‐reported DEPS‐R (ICC 0.746, 95% CI = 0.554‐0.855, p

    Linda Herbert, Rebecca Knibb, Helen Brough, Chrissie Jones, Lisa Lombard, Jennifer Protudjer, Alexandra Santos, Brian Vickery, Ruchi Gupta, Cassandra Screti, Mary Marchisotto (2022)Global Availability and Uptake of Psychological Services for Caregivers of Children with Food Allergy, In: Journal of allergy and clinical immunology149(2)pp. AB120-AB120 Elsevier Inc
    Jon Genuneit, Sashini Jayasinghe, Carmen Riggioni, Rachel Louise Peters, Derek K Chu, Daniel Munblit, Robert J Boyle, George Du Toit, Isabel Skypala, Alexandra F Santos, Christina Jane Jones (2022)Protocol for a systematic review of the diagnostic test accuracy of tests for IgE-mediated food allergy, In: Pediatric allergy and immunology33(1)e13684pp. e13684-n/a

    The European Academy of Allergy and Clinical Immunology (EAACI) is in the process of updating the guidelines on the diagnosis and management of food allergy. The existing guidelines are based on a systematic review of the literature until 30 September 2012. Therefore, a new systematic review must be undertaken to inform the new guidelines. This systematic review aims to assess the accuracy of index tests to support the diagnosis of IgE-mediated food allergy. The databases Cochrane CENTRAL (Trials), MEDLINE (OVID) and Embase (OVID) will be searched for diagnostic test accuracy studies from 1 October 2012 to 30 June 2021. Inclusion and exclusion criteria will be used to select appropriate studies. Data from these studies will be extracted and tabulated, and then reviewed for risk of bias and applicability using the QUADAS-2 tool. All evaluations will be done in duplicate. Studies with a high risk of bias and low applicability will be excluded. Meta-analysis will be performed if there are three or more studies of the same index test and food. A protocol for the systematic review and meta-analyses is presented and was registered using Prospero prior to commencing the literature search. Oral food challenges are the reference standard for diagnosis but involve considerable risks and resources. This protocol for systematic review aims to assess the accuracy of various tests to diagnose food allergy, which can be useful in both clinical and research settings.

    Shankar Kanumakala, Michal Ajzensztejn, Christina Jones, Sereesha Veleshala, Usha Parkash, Tony Hulse (2018)Network-wide audit of 'hypo supplies' availability in children and adolescents with type 1 diabetes mellitus - interim results, In: Endocrine Abstracts
    Elena Wiehn, Cristian Ricci, Aberto Alvarez-Perea, Michael Perkin, CHRISTINA J JONES, Cezmi Akdis, Jean Bousquet, Philippe Eigenmann, Clive E.H. Grattan, Christian Apfelbacher, Jon Genuneit (2021)Adherence to the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist in articles published in EAACI Journals: a bibliographic study, In: Allergy Wiley and Sons

    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.

    Ismail M Osmanov, Ekaterina Spiridonova, Polina Bobkova, Aysylu Gamirova, Anastasia Shikhaleva, Margarita Andreeva, Oleg Blyuss, Yasmin El-Taravi, Audrey DunnGalvin, Pasquale Comberiati , Diego G Peroni, Christian Apfelbacher, Jon Genuneit, Lyudmila Mazankova, Alexandra Miroshina, Evgeniya Chistyakova, Elmira Samitova, Svetlana Borzakova, Elena Bondarenko, Anatoliy A Korsunskiy, Irina Konova, Sarah Wulf Hanson, Gail Carson, Louise Sigfrid, Janet T Scott, Matthew Greenhawt , Elizabeth A Whittaker, Elena Garralda, Olivia Swann, Danilo Buonsenso, Dasha E Nicholls, Frances Simpson, CHRISTINA J JONES, Malcolm G Semple, John O Warner, Theo Vos, Piero Olliaro, Daniel Munblit, (2021)Risk factors for long covid in previously hospitalised children using the ISARIC Global follow-up protocol: A prospective cohort study, In: European Respiratory Journal European Respiratory Society

    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.

    Oana Anton, Ramon Fernandez, Elizabeth Rendon-Morales, Rodrigo Aviles-Espinosa, Chrissie Jones, Heike Rabe (2020)Functionality and acceptability of a novel non-invasive neonatal heart rate monitoring device: a qualitative study of healthcare professionals, In: BMJ Innovations BMJ Publishing Group

    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.

    Cassie Hazell, Christina J Jones, Mark Hayward, Stephen Bremner, Daryl B. O’Connor, Vanessa Pinfold, Helen E Smith (2017)Caring for Caregivers (C4C): study protocol for a pilot feasibility randomised control trial of Positive Written Disclosure for older adult caregivers of people with psychosis, In: Pilot and feasibility studies363 BioMed Central
    Cassie M. Hazell, Christina J. Jones, Aparajita Pandey, Helen E. Smith (2019)Barriers to recruiting and retaining psychosis carers: a case study on the lessons learned from the Caring for Caregivers (C4C) trial, In: BMC Research Notes BMC (Springer Nature)

    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

    Helen E. Smith, Christina Jones (2018)Interpersonal Dimensions of Personalized Medicine for Chronic Obstructive Pulmonary Disease, In: Implementing Precision Medicine in Best Practices of Chronic Airway Diseasespp. 153-158 Academic Press

    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.

    Cassie M Hazell, Helen E Smith, Christina J. Jones (2019)The Blurred Line between Physical Ageing and Mental Health in Older Adults: Implications for the Measurement of Depression., In: Clinical Medicine Insights: Psychiatry10pp. 1-5 SAGE Publications

    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.

    Cassie M. Hazell, Chrissie Jones, Emma M. McLachlan, Helen Smith (2020)Is the content of patient?s written emotional disclosure associated with improved health outcomes for asthma patients?, In: Health Psychology Update29(2)pp. 31-42 British Psychological Society

    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

    Alexandra Santos, Carmen Riggioni, Ioana Agache, Cezmi Akdis, Mubeccel Akdis, Alberto Alvarez-Perea, Montserrat Alvaro-Lozano, Barbara Ballmer-Weber, Simona Barni, Kirsten Beyer, Carsten Bindslev-Jensen, Helen Brough, Betul Buyuktiryaki, Derek Chu, Stefano Del Giacco, Audrey Dunn-Galvin, Bernadette Eberlein, Motohiro Ebisawa, Philippe Eigenmann, Thomas Eiwegger, Mary Feeney, Montserrat Fernandez-Rivas, Helen R Fisher, David M Fleischer, Mattia Giovannini, Claudia Gray, Karin Hoffmann-Sommergruber, Susanne Halken, Jonathan O'B Hourihane, Christina J. Jones, Marek Jutel, Edward Knol, George N Konstantinou, Gideon Lack, Susanne Lau, Andreina Marques Mejias, Mary Marchisotto, Rosan Meyer, Charlotte G Mortz, Beatriz Moya, Antonella Muraro, Caroline Nilsson, Lucila Camargo Lopes de Oliveira, Liam O'Mahony, Nikolaos G Papadopoulos, Kirsten Perrett, Rachel L Peters, Marcia Podesta, Lars K Poulsen, Graham Roberts, Hugh A Sampson, Jurgen Schwarze, Peter Smith, Elizabeth Huiwen Tham, Eva Untersmayr, Ronald Van Ree, Carina Venter, Brian Vickery, Berber Vlieg-Boerstra, Thomas Werfel, Margitta Worm, George Du Toit, Isabel Skypala (2023)EAACI guidelines on the diagnosis of IgE-mediated food allergy, In: Allergy Wiley

    This European Academy of Allergy and Clinical Immunology guideline provides recommendations for diagnosing IgE-mediated food allergy and was developed using the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) approach. Food allergy diagnosis starts with an allergy-focused clinical history followed by tests to determine IgE sensitization, such as serum allergen-specific IgE (sIgE) and skin prick test (SPT), and the basophil activation test (BAT), if available. Evidence for IgE sensitization should be sought for any suspected foods. The diagnosis of allergy to some foods, such as peanut and cashew nut, is well supported by SPT and serum sIgE, whereas there are less data and the performance of these tests is poorer for other foods, such as wheat and soya. The measurement of sIgE to allergen components such as Ara h 2 from peanut, Cor a 14 from hazelnut and Ana o 3 from cashew can be useful to further support the diagnosis, especially in pollen-sensitized individuals. BAT to peanut and sesame can be used additionally. The reference standard for food allergy diagnosis is the oral food challenge (OFC). OFC should be performed in equivocal cases. For practical reasons, open challenges are suitable in most cases. Reassessment of food allergic children with allergy tests and/or OFCs periodically over time will enable reintroduction of food into the diet in the case of spontaneous acquisition of oral tolerance.

    Ciara Holden, Lauren Bignell, Somnath Mukhopadhyay, Christina Jones (2019)The public perception of the facilitators and barriers to implementing personalised medicine: a systematic review, In: Personalized Medicine16(5) Future Medicine

    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.

    Cassie M. Hazell, Mark Hayward, Fiona Lobban, Aparajita Pandey, Vanessa Pinfold, Helen E. Smith, Christina J. Jones (2020)Demographic predictors of wellbeing in Carers of people with psychosis: secondary analysis of trial data, In: BMC Psychiatry20269 BMC

    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.

    Gloria C. Law, Chrissie Jones, Alpaslan Bülbül, Helen E. Smith (2019)"At a loss of what to do": a qualitative analysis of parents’ online discussion forums about their administration of asthma inhalers to their young children, In: Journal of Asthmapp. 1-10 Taylor & Francis (Routledge)

    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.

    Priyamvada Paudyal, Christian Apfelbacher, Chrissie Jones, Sana Siddiqui, Aisha El-Turki, Claudia Degiovanni, Helen Smith (2020)“DLQI Seems to be ‘Action’, and Skindex-29 Seems to be ‘Emotion’”: Qualitative Study of the Perceptions of Patients with Psoriasis or Eczema on Two Common Dermatology-specific Quality of Life Measures, In: Acta Dermato-Venereologica Society for Publication of Acta Dermato-Venereologica

    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.

    Naomi Sugunasingha, Fergal W Jones, Christina J Jones (2020)Interventions for caregivers of children with food allergy: a systematic review, In: Pediatric Allergy and Immunology Wiley

    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.

    Christina J. Jones, Carrie D. Llewellyn, Anthony J. Frew, George Du Toit, Somnath Mukhopadhyay, Helen Smith (2015)Factors associated with good adherence to self-care behaviours amongst adolescents with food allergy, In: Pediatric allergy and immunology26(2)pp. 111-118 Wiley

    BackgroundOur understanding of factors which affect adherence to health sustaining self-care behaviours in adolescents with food allergy is limited. This study used the Health Belief Model to explore the relationship between food allergic adolescents' health beliefs, demographic, structural and social psychological factors with adherence to self-care behaviours, including allergen avoidance and carrying emergency medication. MethodsA cross-sectional study of 188 13- to 19- olds identified from hospital prescribed auto-injectable epinephrine for food allergy. Data were collected on demographics, structural factors, social psychological factors, health beliefs and current adherence behaviour using a postal questionnaire. ResultsFull adherence was reported by 16% of participants. Multivariate analysis indicated that adherence was more likely to be reported if the adolescents belonged to a support group (OR=2.54, (1.04, 6.20) 95% CI), had an anaphylaxis management plan (OR=3.22, (1.18, 8.81) 95% CI), perceived their food allergy to be more severe (OR=1.24, (1.01, 1.52) 95% CI) and perceived fewer barriers to disease management (OR=0.87, (0.79, 0.96) 95% CI). ConclusionsMembership of a patient support group and having an anaphylaxis management plan were associated with good adherence to self-care behaviours in adolescents with food allergy. Our results suggest that interventions to improve provision and utilisation of management plans, address adolescents' perceptions of the severity of anaphylaxis and reduce barriers to disease management may facilitate good adherence behaviours than focussing on knowledge-based interventions.

    Helen E Smith, Christina J Jones, Matthew Hankins, Andy Field, Alice Theadom, Richard Bowskill, Rob Horne, Anthony J Frew (2015)The effects of expressive writing on lung function, quality of life, medication use, and symptoms in adults with asthma: a randomized controlled trial, In: Psychosomatic medicine77(4)pp. 429-437

    Asthma is a chronic condition affecting 300 million people worldwide. Management involves adherence to pharmacological treatments such as corticosteroids and β-agonists, but residual symptoms persist. As asthma symptoms are exacerbated by stress, one possible adjunct to pharmacological treatment is expressive writing (EW). EW involves the disclosure of traumatic experiences which is thought to facilitate cognitive and emotional processing, helping to reduce physiological stress associated with inhibiting emotions. A previous trial reported short-term improvements in lung function. This study aimed to assess whether EW can improve lung function, quality of life, symptoms, and medication use in patients with asthma. Adults (18-45 years) diagnosed as having asthma requiring regular inhaled corticosteroids were recruited from 28 general practices in South East England (n = 146). In this double-blind randomized controlled trial, participants were allocated either EW or nonemotional writing instructions and asked to write for 20 minutes for 3 consecutive days. Lung function (forced expired volume in 1 second [FEV1]% predicted), quality of life (Mark's Asthma Quality of Life Questionnaire), asthma symptoms (Wasserfallen Symptom Score Questionnaire), and medication use (inhaled corticosteroids and β-agonist) were recorded at baseline, 1, 3, 6, and 12 months. Hierarchical linear modeling indicated no significant main effects between time and condition on any outcomes. Post hoc analyses revealed that EW improved lung function by 14% for 12 months for participants with less than 80% FEV1% predicted at baseline (β = 0.93, p = .002) whereas no improvement was observed in the control condition (β = 0.10, p = .667). EW seems to be beneficial for patients with moderate asthma (

    Rory D. Mercer, Christina J. Jones, Helen E. Smith (2017)Reviewing the Content and Design of Anaphylaxis Management Plans Published in English, In: The journal of allergy and clinical immunology in practice (Cambridge, MA)5(5)pp. 1288-1294.e4 Elsevier

    BACKGROUND: Guidelines recommend that patients at risk of anaphylaxis are given an anaphylaxis management plan (AMP) providing advice on symptom recognition and emergency management. However, the format and content of plans is not standardized. OBJECTIVE: The objective of this study was to review the design and contents of different AMPs available in English. METHODS: A systematic internet search identified AMPs published online. Each plan was analyzed for design and content (including signs and symptoms indicative of anaphylaxis and the actions to be taken). The content was compared with an e-Delphi-derived statement of the key characteristics of an AMP. RESULTS: The systematic search identified 41 plans from 29 different sources. The majority of plans identified were personalized management plans for individuals (78%); the others were designed for institutions. Most AMPs addressed both mild/moderate and severe allergic reactions and had different instructions related to the degree of severity. Thirty-seven individual symptoms were mentioned as indicators of anaphylaxis. Only 55% of plans that recommended the administration of an adrenaline autoinjector gave further instructions on how to do this. Only 17% of plans contained comprehensive instructions on safe patient positioning. CONCLUSIONS: There are a wide variety of AMPs in English available online. Plans are similar in design, but differ in content. None of the currently available plans contain all the desirable components recommended in the literature. Because of the variation between plans, when practitioners select an AMP for their patient, they need to be attentive to the content of the plan and its appropriateness for that individual. (C) 2017 American Academy of Allergy, Asthma & Immunology

    H. Smith, D. Horney, C. Jones, S. Goubet, S. Mukhopadhyay, A. Frew (2016)Pragmatic randomized controlled trial of an allergy intervention for children aged 6-16 with asthma and rhinitis in general practice, In: Clinical and experimental allergy46(9)pp. 1227-1235 Wiley

    Background It is widely believed that for allergic rhinitis and asthma, avoidance of specific triggers can improve symptom control. Whilst many children with asthma or rhinitis are sensitized to airborne allergens, primary care diagnostic and management decisions are often made without a detailed history of the allergic triggers or allergy testing. Thus, treatment decisions are empirical and allergen avoidance advice is either not given or, if given, not tailored to the child's sensitivities. Objective To ascertain whether allergy assessment and tailored advice in general practice enhances outcomes of children with asthma and rhinitis. Method Pragmatic RCT of allergy intervention (structured allergy history, skin prick testing and appropriate allergy avoidance advice) vs. usual care in children with asthma and/or rhinoconjunctivitis. A blinded observer assessed outcomes at 12 months. Main outcome measures were symptom scores and disease-specific health-related QoL . Secondary outcomes were healthcare utilization, days unable to pursue usual activities and self-rated improvement. Results A total of 335 participants were randomized to formal allergy assessment or normal care. There were no differences in participants' demographic or clinical characteristics at baseline (all P > 0.05). At 12 months, participants receiving the allergy intervention had fewer rhinitis symptoms (MD - 3.14, 95% CI - 6.01, - 0.81) and an improvement in QoL (MD - 0.50, 95% CI 0.32, 0.68). There were no significant changes in asthma symptoms, healthcare utilization or number of days unable to pursue usual activities. Conclusion Amongst children with known asthma and/or rhinitis in primary care, taking a structured allergy history with skin prick testing and tailored advice on allergy avoidance resulted in reduced symptoms of rhinitis and improved QoL.

    Christian J Apfelbacher, Christina J Jones, Anthony Frew, Helen Smith (2016)Validity of three asthma-specific quality of life questionnaires: the patients' perspective, In: BMJ open6(12)pp. e011793-e011793

    ObjectivesIt is not known which of the many asthma-specific quality of life (QoL) questionnaires best capture the lived experience of people with asthma. The objective of this study was to explore patients' views of three commonly used asthma-specific QoL questionnaires.DesignQualitative study using semistructured interviews.SettingPrimary and secondary care in Brighton and Hove, UK.Participants30 adult people with a physician-diagnosis of asthma who were asked to complete the Juniper Asthma Quality of Life Questionnaire (AQLQ-J), the Sydney Asthma Quality of Life Questionnaire (AQLQ-S) and the Living with Asthma Questionnaire (LWAQ) to elicit their views on the content validity of these.ResultsThematic content analysis revealed a lack of congruence between the concerns of people with asthma and the questionnaire content in terms of missing (eg, allergies) and irrelevant (eg, smoky restaurants) content. The AQLQ-J was perceived as a ‘narrow’, ‘medical’ questionnaire focused on symptoms, the environment and functional ability. In contrast, the LWAQ and the AQLQ-S were perceived to be ‘non-medical’. The LWAQ was described as a ‘test’ and as a wide-ranging, embracing and holistic questionnaire. Its strong emotional focus was irritating to some. The AQLQ-S was described as a simple, quick and easy questionnaire, although there was a perception that it was lacking in depth.ConclusionsPatient interviews highlighted strengths and shortcomings in the content validity of these three asthma-specific questionnaires. For patients, the AQLQ-S content seemed to be the most pertinent in its adequacy of coverage of medical, social and emotional aspects of health-related QoL in asthma.

    Christina Jane Jones, Helen Smith, Carrie Llewellyn (2014)Evaluating the effectiveness of health belief model interventions in improving adherence: a systematic review, In: Health psychology review8(3)pp. 253-269 Taylor & Francis

    Lack of adherence to health-promoting advice challenges the successful prevention and management of many conditions. The Health Belief Model (HBM) was developed in 1966 to predict health-promoting behaviour and has been used in patients with wide variety of disease. The HBM has also been used to inform the development of interventions to improve health behaviours. Several reviews have documented the HBM's performance in predicting behaviour, but no review has addressed its utility in the design of interventions or the efficacy of these interventions. A systematic review was conducted to identify interventional studies which use the HBM as the theoretical basis for intervention design. The HBM has been used continuously in the development of behaviour change interventions for 40 years. Of 18 eligible studies, 14 (78%) reported significant improvements in adherence, with 7 (39%) showing moderate to large effects. However, only six studies used the HBM in its entirety and five different studies measured health beliefs as outcomes. Intervention success appeared to be unrelated to HBM construct addressed challenging the utility of this model as the theoretical basis for adherence-enhancing interventions. Interventions need to be described in full to allow for the identification of effective components and replication of studies.

    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.

    C. J. Jones, L. A. Sommereux, H. E. Smith (2018)Exploring what motivates and sustains support group engagement amongst young people with allergies: A qualitative study, In: Clinical and experimental allergy48(9)pp. 1195-1205 Wiley

    BackgroundPositive self-care behaviours are more likely in young people who engage with allergy support groups, but reasons for this association are not well understood. ObjectivesThis study explored how and why young people engage with allergy support groups to identify what activities and resources are beneficial. MethodsIn-depth, semistructured interviews were conducted with young people aged 12-21years who reported engaging with allergy support groups (in person or online). Interviews were audiotaped, transcribed verbatim and analysed using thematic content analysis. ResultsThe 21 participants had a range of allergies; initially, most joined support groups on suggestion of their parent/carer although older participants sought groups independently. Feeling included and sharing experiences with people with similar problems/challenges were highly valued. Through membership, young people reported improved self-esteem and confidence in both managing their allergies and lives generally. Information, such as allergy alerts and hard-hitting video campaigns, were reported to positively influence adherence to self-care behaviours such as carrying medication. Participants wanted greater availability of allergy support groups, and higher profiles in health care and educational settings, as well as through social media. Conclusions and Clinical RelevanceParticipants valued the psychological and practical support of networking with others with allergies, and described how membership improved their confidence. This study also provides insight into the ways support groups improve young people's adherence to medical advice and positive self-care behaviours; participants responded well to hard-hitting video campaigns which appeared to emphasize the severity and susceptibility of anaphylaxis. Participants identified the need for more active promotion of support groups amongst young people and their clinicians, as well as making them available in more localities.

    Hannah Brooks, Carrie D. Llewellyn, Tom Nadarzynski, Fernando Castilho Pelloso, Felipe De Souza Guilherme, Alex Pollard, Christina J. Jones (2018)Sexual orientation disclosure in health care: a systematic review, In: British journal of general practice68(668)pp. E187-E196 Royal Coll General Practitioners

    Background Significant health disparities between sexual minority individuals (that is, lesbian, gay, bisexual, or transgender [LGBT]) and heterosexual individuals have been demonstrated. Aim To understand the barriers and facilitators to sexual orientation (SO) disclosure experienced by LGBT adults in healthcare settings. Design and setting Mixed methods systematic review, including qualitative, quantitative, and mixed methods papers following PRISMA guidelines. Method Study quality was assessed using the Mixed Methods Appraisal Tool (MMAT) and a qualitative synthesis was performed. Studies were included if their participants were aged >= 18 years who either identified as LGBT, had a same-sex sexual relationship, or were attracted to a member of the same sex. Results The review included 31 studies representing 2442 participants. Four overarching themes were identified as barriers or facilitators to SO disclosure: the moment of disclosure, the expected outcome of disclosure, the healthcare professional, and the environment or setting of disclosure. The most prominent themes were the perceived relevance of SO to care, the communication skills and language used by healthcare professionals, and the fear of poor treatment or reaction to disclosure. Conclusion The facilitators and barriers to SO disclosure by LGBT individuals are widespread but most were modifiable and could therefore be targeted to improve healthcare professionals' awareness of their patients' SO. Healthcare professionals should be aware of the broad range of factors that influence SO disclosure and the potential disadvantageous effects of non-disclosure on care. The environment in which patients are seen should be welcoming of different SOs as well as ensuring that healthcare professionals' communication skills, both verbal and nonverbal, are accepting and inclusive.

    H. Smith, D. Horney, S. Goubet, C. Jones, A. Raza, P. White, A. Frew (2015)Pragmatic randomized controlled trial of a structured allergy intervention for adults with asthma and rhinitis in general practice, In: Allergy (Copenhagen)70(2)pp. 203-211 Wiley

    BackgroundIt is widely believed that in patients with allergic rhinitis and asthma, avoidance of specific triggers can help improve symptom control and reduce need for medication. Whilst most patients with asthma or rhinitis are sensitized to airborne allergens, primary care diagnostic and management decisions are often made without either obtaining a detailed history of the patient's allergic triggers or performing skin prick tests. Thus, management decisions are empirical and allergen avoidance advice is either not given or, if given, not tailored to the patient's sensitivities. MethodTo ascertain whether allergy assessment and tailored advice in general practice for patients with asthma and rhinitis enhance well-being, we conducted a pragmatic, open, randomized controlled trial of allergy intervention (structured allergy history and skin prick testing and appropriate advice on allergy avoidance) versus usual care in adult patients with a working diagnosis of asthma and/or rhino-conjunctivitis. Outcomes were assessed after 12months by an observer who was blinded to allocation. The main outcome measures were asthma and rhinitis symptoms, disease-specific health-related quality of life, generic quality of life and lung function. ResultsThere were no significant differences in baseline demographics or disease characteristics between patients assigned to immediate or delayed skin prick testing. No significant differences were observed between groups for any measures of symptoms, quality of life or lung function at 12months (all P>0.05). ConclusionAmongst adults with known asthma and/or rhinitis in primary care, taking a structured allergy history with skin prick tests and giving tailored advice on allergy avoidance made no difference to their symptoms, quality of life or lung function as measured twelve months later.

    Christina J. Jones, Helen E. Smith, Anthony J. Frew, George Du Toit, Somnath Mukhopadhyay, Carrie D. Llewellyn (2014)Explaining adherence to self-care behaviours amongst adolescents with food allergy: A comparison of the health belief model and the common sense self-regulation model, In: British journal of health psychology19(1)pp. 65-82 Wiley

    Objectives. To identify explanations for adherence to self-care behaviours amongst adolescents with food allergy-induced anaphylaxis using two social cognition models: the health belief model (HBM) and the common sense self-regulation model (CS-SRM). Design. Cross-sectional self-completion questionnaire study to gain initial evidence of the two models' feasibility/effectiveness in explaining adherence in an adolescent food-allergic population. Methods. Participants aged 13-19 years with a diagnosis of severe food allergy and a prescription of anadrenaline auto-injector were recruited from hospital outpatients. Adherence to self-care behaviours was measured in addition to constructs from the HBM and CS-SRM. Results. One hundred and eighty-eight food-allergic adolescents completed the questionnaire. The HBM, specifically the constructs perceived severity and barriers, accounted for 21% of the explained variance in adherence behaviours. CS-SRM constructs, illness identity, timeline cyclical beliefs and emotional representations explained 25% of the variance. Conclusions. Both models performed similarly in explaining adherence to self-care behaviours in adolescents with food allergy. Interventions designed to elicit personal barriers to adherence and to address perceptions of severity and the unpredictable nature of symptoms may be more effective in improving adherence to self-care behaviours than current interventions.

    Ismail M Osmanov, Ekaterina Spiridonova, Polina Bobkova, Aysylu Gamirova, Anastasia Shikhaleva, Margarita Andreeva, Oleg Blyuss, Yasmin El-Taravi, Audrey DunnGalvin, Pasquale Comberiati, Diego G Peroni, Christian Apfelbacher, Jon Genuneit, Lyudmila Mazankova, Alexandra Miroshina, Evgeniya Chistyakova, Elmira Samitova, Svetlana Borzakova, Elena Bondarenko, Anatoliy A Korsunskiy, Irina Konova, Sarah Wulf Hanson, Gail Carson, Louise Sigfrid, Janet Scott, Matthew Greenhawt, Elizabeth A Whittaker, Elena Garralda, Olivia Swann, Danilo Buonsenso, Dasha E Nicholls, Frances Simpson, Christina Jones, Malcolm G Semple, John O Warner, Theo Vos, Piero Olliaro, Daniel Munblit (2022)Risk factors for long covid in previously hospitalised children using the ISARIC Global follow-up protocol: A prospective cohort study European Respiratory Society

    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. Methods: This is a prospective cohort study of children (≤18 years old) admitted with confirmed Covid-19. Children admitted to the hospital between April 2, 2020 and August 26, 2020, were included. Telephone interview using the International Severe Acute Respiratory and emerging Infection Consortium (ISARIC) Covid-19 Health and Wellbeing paediatric follow-up survey. Persistent symptoms (>5 months) were further categorised by system(s) involved. Findings: 518 of 853 (61%) of eligible children were available for the follow-up assessment and included in the study. Median age was 10.4 years (IQR, 3–15.2) and 270 (52.1%) were girls; median follow-up since hospital discharge was 256 (223–271) days. At the time of the follow-up interview 126 (24.3%) participants reported persistent symptoms among which fatigue (53, 10.7%), sleep disturbance (36, 6.9%,) and sensory problems (29, 5.6%) were the most common. Multiple symptoms were experienced by 44 (8.4%) participants. Risk factors for persistent symptoms were: older age “6–11 years” (odds ratio 2.74 (95% confidence interval 1.37 to 5.75) and “12–18 years” (2.68, 1.41 to 5.4); and a history of allergic diseases (1.67, 1.04 to 2.67). Interpretation: A quarter of children experienced persistent symptoms months after hospitalization with acute covid-19 infection, with almost one in ten experiencing multi-system involvement. Older age and allergic diseases were associated with higher risk of persistent symptoms at follow-up.

    Tom Nadarzynski, Helen Smith, Daniel Richardson, Christina J. Jones (2014)Human papillomavirus and vaccine-related perceptions among men who have sex with men: a systematic review, In: Sexually transmitted infections90(7)pp. 515-U78 Bmj Publishing Group

    Background Targeted human papillomavirus (HPV) vaccine could prevent HPV-related cancers and genital warts among men who have sex with men (MSM). In order to develop effective vaccination programmes for MSM, it is crucial to understand their knowledge, beliefs about HPV and attitudes towards HPV vaccine. Methods A systematic search of 10 databases examined articles investigating HPV knowledge and HPV-related perceptions among MSM. Each paper was assessed to identify potential research directions in the context of targeted HPV vaccination for MSM. Results We identified 16 studies that included 5185 MSM and conducted mainly in North America. Generally, participants were over 26 years old, had poor-to-moderate knowledge about HPV and were not concerned about HPV-related diseases. Over a half of MSM were willing to accept HPV vaccine, if offered. However, there was large variability in HPV vaccine acceptability, partially due to inconsistencies in methods of ascertainment but also different levels of HPV vaccine awareness. Conclusions Despite several misconceptions and poor knowledge of HPV infection, MSM might be receptive to HPV vaccination. However, further research is needed to identify which factors contribute to potential vaccine uptake in hypothetical MSM-targeted HPV vaccination. Future studies need to target those MSM with little sexual experience, who would benefit most from HPV vaccination.

    Christina J. Jones, Helen E. Smith, Carrie D. Llewellyn (2016)A systematic review of the effectiveness of interventions using the Common Sense Self-Regulatory Model to improve adherence behaviours, In: Journal of health psychology21(11)pp. 2709-2724 Sage

    This systematic review assessed the effectiveness of the Common Sense Self-Regulatory Model in the design of interventions to improve adherence behaviours. Of nine eligible studies, six reported improvements in adherence behaviours and three showed moderate to large effects on return to work and lifestyle recommendations. Four studies stated how Common Sense Self-Regulatory Model constructs were addressed in the intervention and five measured illness perceptions as outcomes. Evidence was found for targeting cure/control perceptions in studies aimed at improving adherence behaviours. Future studies need to measure illness perceptions pre- and post-intervention to enable mediational analyses to assess the effect of Common Sense Self-Regulatory Model interventions on improving health outcomes.

    Christian Joachim Apfelbacher, Christina Jones, Matthew Hankins, Helen Smith (2012)Validity of two common asthma-specific quality of life questionnaires: Juniper mini asthma quality of life questionnaire and Sydney asthma quality of life questionnaire, In: Health and quality of life outcomes10(1)pp. 97-97 Springer Nature

    Background: This study explored the psychometric properties (internal consistency, construct validity, discriminative ability) of the Juniper Mini Asthma Quality of Life Questionnaire (Mini AQLQ-J) and the Sydney Asthma Quality of Life Questionnaire (AQLQ-S). Methods: One hundred fourty-six adults (18-45 years) with asthma requiring regular inhaled corticosteroids were recruited to a trial of written emotional disclosure. Correlational analyses were performed to understand the relationship of the two measures with each other, with symptoms, lung function, asthma control, asthma bother and generic quality of life. Median quality of life scores were compared according to gender, health care usage and levels of asthma severity. Results: AQLQ-J and AQLQ-S total scores correlated strongly with each other (rho = -0.80) and moderately with the EuroQol Current Health Status Scale (AQLQ-J: rho = 0.35; AQLQ-S: rho = -0.40). Domain score correlations between AQLQ-J and AQLQ-S were mostly moderate (0.50 < rho < 0.80). Both QoL measures were significantly correlated with symptom score. Correlations with the symptom score asthma module (AQLQ-J: rho = -0.69; AQLQ-S: rho = 0.50) were stronger compared with the total symptom score and the symptom score rhinitis module (AQLQ-J: rho = -0.41; AQLQ-S: rho = 0.31). Neither QoL measure was significantly correlated with FEV1, % predicted at the total or the domain level. Total scores of both measures were significantly correlated with subjective asthma control (AQLQ-J: rho = 0.68; AQLQ-S: rho = -0.61) and asthma bother (AQLQ-J: rho = -0.73; AQLQ-M: rho = 0.73). Total AQLQ-J score and total AQLQ-S score were significantly associated with perceived asthma severity (AQLQ-J: p=0.004, AQLQ-S: p=0.002) and having visited a GP in the past four months (AQLQ-J: p=0.003, AQLQ-S: p=0.002). Conclusions: This study provides further evidence for the validity of the AQLQ-J and the AQLQ-S in a British population of adult patients with asthma managed in primary care. Correlations with lung function parameters were weak or absent. Correlations with generic quality of life were moderate, those with asthma symptoms, asthma control and asthma bother were strong. Both measures are able to discriminate between levels of asthma severity and health care usage.

    Priyamvada Paudyal, Christina Jones, Caroline Grindey, Rusha Dawood, Helen Smith (2018)Meditation for asthma: Systematic review and meta-analysis, In: The Journal of asthma55(7)pp. 771-778 Taylor & Francis

    Objective: To conduct a comprehensive review and meta-analysis of the effectiveness of meditation on a variety of asthma outcomes. Methods: We searched MEDLINE, EMBASE, CINAHL, PsycINFO and AMED in June 2016 to identify randomized controlled trials (RCTs) investigating the effectiveness of meditation in adults with asthma. No restriction was put on language or year of publication. Study quality was assessed using The Cochrane Risk of Bias Assessment Tool. Meta-analysis was carried out using RevMan 5.3. Results: Four RCTs involving 201 patients met the inclusion criteria. Quality of studies was inconsistent with only one study reporting adequate allocation concealment. Disease-specific quality of life was assessed in two trials; a pooled result involving 62 intervention and 65 control participants indicated a significant improvement in quality of life in the meditation group compared to the control group (SMD 0.40, 95% CI 0.05-0.76). A pooled result from all four studies indicated the uncertain effect of meditation in forced expiratory volume in 1s (FEV1) (SMD -0.67, 95% CI -2.17 to 0.82). Results from the individual trials suggest that meditation may be helpful in reducing perceived stress and the use of short-term rescue medication. Conclusion: Our review suggests that there is some evidence that meditation is beneficial in improving quality of life in asthma patients. As two out of four studies in our review were of poor quality, further trials with better methodological quality are needed to support or refute this finding.

    Christina J. Jones, Mark Hayward, Abigail Brown, Elizabeth Clark, Daniel Bird, Gina Harwood, Crystyn Scott, Angela Hillemann, Helen E. Smith (2016)Feasibility and Participant Experiences of a Written Emotional Disclosure Intervention for Parental Caregivers of People with Psychosis, In: Stress and health32(5)pp. 485-493 Blackwell Publishing Ltd
    Clare E. Brown, Christina J. Jones, Laura Stuttaford, Annalee Robertson, Rabia S. Rashid, Helen E. Smith (2016)A qualitative study of the allergy testing experiences, views and preferences of adult patients, In: Clinical and translational allergy6(1)pp. 34-n/a Springer Nature

    Background: Patients can be tested for IgE sensitivities with in vivo or in vitro testing, but patients' experiences of different allergy test modalities have not been studied. The objective of this study was to investigate adult patients' experiences, views and preferences for allergy testing, exploring skin prick testing and allergen-specific IgE testing. Methods: A qualitative study of adults attending out-patients for investigation of a suspected allergy. A purposive, convenience sample identified participants and semi-structured interviews were conducted, face to face or by telephone. Interviews were recorded and transcribed verbatim. Thematic content analysis was used to explore patients' experiences. Results: 23 patients 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 patients simplicity and procedural speed, necessitating only a single puncture site, and was perceived to be a superior test as it was conducted in a laboratory. Conclusions: The patient preferred method of allergy testing was skin prick testing rather than in vitro allergen specific IgE testing. However, most patients were accepting of either testing modality because their desire to confirm or exclude an allergic trigger overrode any perceived disadvantages of the test method.

    Aisha El Turki, Helen Smith, Carrie Llewellyn, Christina J. Jones (2017)A systematic review of patients', parents' and healthcare professionals' adrenaline auto-injector administration techniques, In: Emergency medicine journal : EMJ34(6)pp. 402-415 Bmj Publishing Group

    Introduction In order to enable fast treatment response to anaphylactic reactions, adrenaline auto-injectors (AAI) have been developed and manufactured. It has been reported in several studies that administration technique is suboptimal. The primary purpose of this study was to review the nature and extent of the deficiencies in administration technique among patients, parents/caregivers and healthcare professionals. Methods Relevant publications were identified between 1998 and 2015 using two search methods: a keyword search in Embase, PubMed, British Nursing Index and Cumulative Index to Nursing and Allied Health Literature and a search of reference lists of relevant articles. Results Twenty-three studies met the inclusion criteria. Overall, 37% of patients, 32% of parents/caregivers and 21% of healthcare professionals demonstrated correct administration technique. For studies which employed a before-and-after training study design, correct technique was achieved in 77% of patients, 79% of caregivers and 65% of healthcare professionals. The most consistently observed error was the failure to hold the device in place for the recommended time. For patients, factors associated with good technique were being aged over 18 years, trained in AAI administration by an allergist, prescribed an AAI for more than 30 months, having a history of severe anaphylaxis and membership of a support group. For parents/caregivers in addition to those mentioned, being given a training device with which to practice, improved technique. Discussion There was wide variation in administration techniques reported. However, studies designed using before-and-after training show that even a brief demonstration and educational intervention can improve technique. Further studies are required to design and pilot acceptable and cost-effective educational materials.

    S. Simpson, C. Jones, PAUL HANNA (2021)A systematic review of parents? experiences of raising a child with type 1 diabetes, In: British Journal of Diabetes ABCD

    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.

    Katherine Wakelin, Rebecca Read, Nicola O'Donnell, Marisa Baker, Rose-Marie Satherley, Rose Stewart, Christina Jane Jones (2023)Integrating Conversations About Disordered Eating in Children and Young People into Routine Type One Diabetes Care: A Practical Guide for Paediatric Diabetes Teams, In: Practical Diabetes Wiley

    A higher proportion of children and young people (CYP) with type 1 diabetes (T1D) present with disordered eating compared to CYP without T1D. Due to the complexities of T1D management in addition to eating disorder treatment, it is essential to discuss T1DE with families to screen early and frequently. This enables those most vulnerable to be identified and treated early. The aim of this paper was to (1) identify the barriers for health care professionals (HCPs) communicating with families about T1D and Disordered Eating (T1DE) and (2) identify practical ways to overcome these barriers. This paper discusses qualitative data from interviews with ten parents about how they would like conversations about T1DE to be facilitated by HCPs. All parents had a child aged 11-14 with T1D and were recruited through the PRIORITY trial. Four main barriers to communicating about T1DE were identified. These were: (1) parents fearing that conversation about T1DE will increase the likelihood of T1DE developing, (2) psychology not being integrated into routine care, (3) concerns about sensitive communication around the topic of weight and (4) parents feeling overwhelmed. Practical suggestions for ways HCPs can overcome these barriers are discussed. The paper provides a practical guide for HCPs to help them facilitate conversations about T1DE with families in order to allow earlier detection, prevention and intervention of disordered eating within this population.

    Sophie Venters, Christina J Jones (2020)The experiences of grandchildren who provide care for a grandparent with dementia: A systematic review, In: Dementia (London, England) Sage

    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.

    Stefanie Charlotte Vreeken‐Ross, Helen E Smith, Christina J Jones (2021)A review of freely available online support for food allergy‐related emotional well‐being, In: Clinical and Experimental Allergy John Wiley & Sons
    Christina J Jones, Cassie Hazell, Mark Hayward, Aparajita Pandey, Alexandra Papamichail, Stephen A Bremner, Daryl B O'Connor, Vanessa Pinfold, Helen E Smith (2022)Caring for Carers (C4C): Results from a feasibility randomised controlled trial of positive written disclosure for older adult carers of people with psychosis, In: PLOS ONE17(11)e0277196 Public Library of Science

    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.

    Naomi Sugunasingha, Fergal W Jones, George du Toit, Christina J. Jones (2022)Evaluating an online self-help intervention for parents of children with food allergies, In: Pediatric Allergy and Immunologye13731 Wiley

    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.

    Gloria C Law, Alpaslan Bülbül, Christina J Jones, Helen Smith (2020)‘The mean mummy way’ – experiences of parents instilling eye drops to their young children as described in online forums and blogs, In: BMC Pediatrics20514 BioMed Central

    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.

    Cassie Hazell, Christina J Jones, Aparajita Pandey, Helen E Smith (2019)Barriers to recruiting and retaining psychosis carers: a case study on the lessons learned from the Caring for Caregivers (C4C) trial, In: BMC research notes12810 Springer Nature

    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

    Lucy Watson, Paul Hanna, Christina J Jones (2021)A systematic review of the experience of being a sibling of a child with an autism spectrum disorder, In: Clinical Child Psychology and Psychiatry Sage

    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.

    JENNIFER LOUISE ZINSER, NICOLA O'DONNELL, LUCY HALE, CHRISTINA J JONES (2022)Multi‐family therapy for eating disorders across the lifespan: A systematic review and meta‐analysis, In: European eating disorders review Wiley

    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.

    Stefanie C Vreeken‐Ross, Sam Cartwright‐Hatton, Sally A Harris, Paul Hanna, Christina J Jones (2021)Feasibility of an online CBT group intervention for parents of children with food allergy, In: Clinical and Experimental Allergy Wiley

    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).

    Rachel Schofield, Bridget Dibb, Rebecca Coles-Gale, Christina J Jones (2021)The experience of relatives using intensive care diaries: A systematic review and qualitative synthesis, In: International journal of nursing studies103927 Elsevier Ltd

    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

    Kirsten Barnicot, MORGAN WELSH, Sarah Kalwarowsky, Eloise Stevens, JANE ILES, Jennie Parker, Maddalena Miele, Tara Lawn, Laura O'Hanlon, Sushma Sundaresh, Ola Ojala, Paul Bassett, CHRISTINA J JONES, Paul Ramchandani, Mike Crawford (2022)Video feedback parent-infant intervention for mothers experiencing enduring difficulties in managing emotions and relationships: A randomised controlled feasibility trial, In: Br J Clin Psychol Wiley

    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

    Helen Smith, Clare Brown, Annalee Robertson, Laura Stuttaford, Rabia Rashid, Christina J Jones (2019)The Experience of Being Tested for Allergies; the Views of Children and their Parents, In: Journal of Allergy & Therapy10(1)287pp. 1-6 OMICS International

    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.

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