Reliability and validity of a parent-reported screening tool for disordered eating in children and young people with type 1 diabetes.

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 parental use. Eighty-nine 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 well-being. 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 < 0.001), indicating good convergent validity. Construct validity with hypothesised variables, including specific eating behaviours, diabetes-related distress, well-being, CYP BMI, gender and parental worry about CYP disordered eating, suggested validity of the measure. However, some hypothesised variables did not significantly correlate with the parent-reported DEPS-R as expected. CONCLUSIONS: The parent-reported DEPS-R has demonstrated good reliability and validity, and it may provide clinical benefit by increasing screening and early detection of disordered eating in CYP with T1D. Whilst novel and providing stepped increase in our knowledge, these findings would benefit from further validation (e.g. in a larger sample and responsiveness).

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.

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 (<80% across domains). A signal of efficacy was observed across outcome measures with moderate improvements in the CEBQ subscale satiety responsiveness (d = 0.55, 95% CI 0.01, 1.08) and child's BMI (d = -0.56, 95% CI -1.09, 0.00) at 3 months compared with controls. Trends in the anticipated direction were also observed with reductions in disordered eating (DEPS-R) and diabetes distress (PAID-PR) and improvements in wellbeing (WEMWBS). CONCLUSIONS: This is the first study to have co-designed and evaluated a novel parenting intervention to prevent disordered eating in CYP with T1D. The intervention proved feasible and acceptable with encouraging effects. Preparatory work is required prior to definitive trial to ensure the most relevant primary outcome measure and ensure strategies for optimum outcome completion.

Understanding the needs of children and young people with food hypersensitivities: A qualitative study.

BACKGROUND: Research has highlighted the psychosocial impact of living with food hypersensitivities (FHS) on children and young people (CYP). However, there is a paucity of qualitative data from CYP themselves in terms of the support they would like to receive in order to improve their psychological wellbeing. OBJECTIVE: The aim of the study was to further understand firsthand, the experiences of CYP with FHS including the challenges they face, to inform structural changes in how their psychological wellbeing is supported. METHODS: CYP aged 8-17 years were recruited with self-reported food allergy or celiac disease and asked about their experiences of living with and the psychological impact of FHS, through online, semi-structured interviews. Interviews were transcribed verbatim and data were analysed using reflexive thematic analysis. RESULTS: Twenty five CYP participated in interviews. Three themes were generated which addressed an aspect of change that CYP felt would enable support and improve their wellbeing: desire to feel heard, need for control, and appreciation of the severity of their FHS. CONCLUSION: This is the first study to investigate what CYP with FHS would find beneficial for their psychological wellbeing with recommendations provided as to how these may be implemented across various systems. Recommendations include health professionals being more aware of the psychosocial impact from diagnosis, schools being more open and consistent with FHS management strategies, and friends being educated on the management of FHS.

Celiac disease symptom profiles and their relationship to gluten-free diet adherence, mental health, and quality of life.

BACKGROUND: A subgroup of adults with celiac disease experience persistent gastrointestinal and extraintestinal symptoms, which vary between individuals and the cause(s) for which are often unclear. METHODS: The present observational study sought to elucidate patterns of persistent symptoms and the relationship between those patterns and gluten-free diet adherence, psychiatric symptoms, and various aspects of quality of life (QOL) in an online sample of adults with celiac disease. U.S. adults with self-reported, biopsy-confirmed celiac disease (N = 523; Mage = 40.3 years; 88% women; 93.5% White) voluntarily completed questionnaires as part of the iCureCeliac® research network: (a) Celiac Symptoms Index (CSI) for physical symptoms and subjective health; (b) Celiac Dietary Adherence Test for gluten-free diet adherence; (c) PROMIS-29, SF-36, and Celiac Disease Quality of Life Survey for psychiatric symptoms and QOL. Symptom profiles were derived using latent profile analysis and profile differences were examined using auxiliary analyses. RESULTS: Latent profile analysis of CSI items determined a four-profile solution fit best. Profiles were characterized by: (1) little to no symptoms and excellent subjective health (37% of sample); (2) infrequent symptoms and good subjective health (33%); (3) occasional symptoms and fair to poor subjective health (24%); (4) frequent to constant symptoms and fair to poor subjective health (6%). Profiles 2 and 3 reported moderate overall symptomology though Profile 2 reported relatively greater extraintestinal symptoms and Profile 3 reported relatively greater gastrointestinal symptoms, physical pain, and worse subjective health. Profiles differed on anxiety and depression symptoms, limitations due to physical and emotional health, social functioning, and sleep, but not clinical characteristics, gluten-free diet adherence, or QOL. Despite Profile 3's moderate symptom burden and low subjective health as reported on the CSI, Profile 3 reported the lowest psychiatric symptoms and highest quality of life on standardized measures. CONCLUSIONS: Adults with celiac disease reported variable patterns of persistent symptoms, symptom severity, and subjective health. Lack of profile differences in gluten-free diet adherence suggests that adjunctive dietary or medical assessment and intervention may be warranted. Lower persistent symptom burden did not necessarily translate to better mental health and QOL, suggesting that behavioral intervention may be helpful even for those with lower celiac symptom burden.

Maladaptive Food Attitudes and Behaviors in Individuals with Celiac Disease and Their Association with Quality of Life.

BACKGROUND: The only treatment for celiac disease (CeD) is strict lifelong adherence to a gluten-free diet (GFD). In some individuals the demands of a GFD may contribute to maladaptive eating attitudes and behaviors that impair quality of life (QOL). The Celiac Disease Food Attitudes and Behaviors (CD-FAB) is an easily administered and scored 11-item tool querying potentially maladaptive food attitudes and behaviors resulting from beliefs around gluten exposures and food safety. OBJECTIVES: To assess the usefulness of the CD-FAB in establishing the presence of maladaptive food attitudes and behaviors among adults with CeD and to explore the relationship between these attitudes and behaviors and other factors including QOL, anxiety, depression, CeD symptoms and personality traits. METHODS: The study is a cross-sectional pilot of 50 adults (mean age 29.6 years) with biopsy-proven CeD who followed a GFD for at least one year and had no self-reported eating disorder diagnosis. High scores on the CD-FAB tool suggest higher disordered eating attitudes and beliefs. RESULTS: Compared to lower scores (mean 20.2), higher (worse) CD-FAB scores (mean 54.5) were positively associated with recency of diagnosis, number of CeD-related gastrointestinal symptoms, and the personality trait of neuroticism. Higher CD-FAB scores were statistically and clinically significantly associated with diminished QOL (p < 0.001). The relationship with anxiety and depression was less clear but trended in the expected direction. CONCLUSION: The CD-FAB may be a useful tool for dietitians who wish to monitor maladaptive food attitudes and behaviors among their CeD patients, especially in the first-year post-diagnosis.

PaRent InterventiOn to pRevent dIsordered eating in children with TYpe 1 diabetes (PRIORITY): Study protocol for a feasibility randomised controlled trial.

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 wellbeing, 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 2 h 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- and 3-month 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. TRIAL REGISTRATION: This protocol has been registered with ClinicalTrials.gov [Identifier: NCT04741568].

A Systematic Review of the Effects of Urban Living on Suicidality and Self-Harm in the UK and Ireland.

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.

How acceptable do parents experiencing mental health challenges find e-Health interventions for mental health in the postnatal period: a systematic review.

Poor mental health in the postnatal period is experienced by high numbers of parents, with a high associated cost to society, however accessing therapeutic support during this time is complicated by parenting commitments. This has been further compounded by the covid-19 pandemic, where access to traditional therapy has been impacted. A lack of access to support for poor mental health in this period can have long term impacts on both the parents and their child. E-Health provides a potential solution to parents accessing support during this period by providing a convenient and flexible intervention which overcomes the barriers of traditional face-to-face therapy. However, without investigating the acceptability of such support for parents, it is not possible to predict uptake and consequent effectiveness. The current review synthesizes data available on acceptability of e-Health interventions in the post-natal period, finding that parents valued e-Health interventions however considerations must be made to certain, key areas impacting the acceptability of these interventions for parents. An element of therapist support and individualised content was preferred, along with a smooth user experience. Parents valued that e-Health fit into their routines and provided anonymity in their interactions. Further research needs to be completed into acceptability for minority social and ethnic groups where access and preference may differ.

An interpretative phenomenological analysis of the experience of couples' recovery from the psychological symptoms of trauma following traumatic childbirth.

Globally, a large proportion of birthing mothers, and a to a lesser extent their partners, experience birth trauma each year, and yet access to adequate post-natal trauma support is rarely available. Untreated birth trauma has been shown to negatively impact the family in terms of the parents' relationship with one another, and long-term negative consequences for the child. Despite a drive towards integrating mental health support into maternity services and a call to provide mental health support for couples rather than solely the birthing mother, there is little research exploring what birthing couples find helpful in recovery from birth trauma. The current research interviewed six couples using an Interpretative Phenomenological Approach in order to explore their understanding of what supported their recovery from birth trauma. Four themes were identified: 'We need validation', 'Feeling paper thin', 'This is a system failure' and 'Birth trauma is always going to be a part of you'. The data describes an understanding of parents' feelings of vulnerability and loss of trust in services to provide support following birth trauma. Further, parents' need for validation and repositioning of control away from healthcare professionals when considering the availability and knowledge of the support options available is discussed. Clinical implications for supporting parents following birth trauma are explored, including an identified need for trauma informed care communication training for all healthcare professionals involved in maternity care, and the requirement for sources of therapeutic support external from the parent dyad in order to maintain the couples' interpersonal relationship.

Integrated health Services for Children: a qualitative study of family perspectives.

BACKGROUND: There is increasing evidence that integrated care improves child related quality of life and reduces health service use. However, there is limited evidence on family perspectives about the quality of integrated care for children's services. This study aimed to understand children, young people, and caregivers' perceptions of a new integrated care service, and to identify essential components of integrated care for children and young people with ongoing conditions. METHODS: A qualitative analysis of in-depth interviews with caregivers and children included families (N = 37) with children with one of four ongoing conditions (asthma, eczema, epilepsy, constipation) who had experienced a new integrated care service delivered in South London, UK. RESULTS: Four key components of integrated services identified were: that the key health-worker understood the health needs of the family in context; that professionals involved children and caregivers in treatment; that holistic care that supported the family unit was provided; and that families experienced coordination across health, social, and education systems. CONCLUSIONS: Children and families identify care navigation and a holistic approach as key components that make high quality integrated care services. Service developments strengthening these aspects will align well with family perspectives on what works and what matters.