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1.
Diabet Med ; 41(4): e15256, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37925592

RESUMEN

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).


Asunto(s)
Diabetes Mellitus Tipo 1 , Trastornos de Alimentación y de la Ingestión de Alimentos , Niño , Humanos , Adolescente , Diabetes Mellitus Tipo 1/complicaciones , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/epidemiología , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Trastornos de Alimentación y de la Ingestión de Alimentos/diagnóstico , Trastornos de Alimentación y de la Ingestión de Alimentos/epidemiología , Padres
2.
Diabet Med ; 41(4): e15263, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38100228

RESUMEN

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.


Asunto(s)
Diabetes Mellitus Tipo 1 , Trastornos de Alimentación y de la Ingestión de Alimentos , Niño , Humanos , Adolescente , Diabetes Mellitus Tipo 1/complicaciones , Diabetes Mellitus Tipo 1/terapia , Estudios de Factibilidad , Padres , Encuestas y Cuestionarios , Trastornos de Alimentación y de la Ingestión de Alimentos/prevención & control
3.
BMC Gastroenterol ; 24(1): 9, 2024 Jan 02.
Artículo en Inglés | MEDLINE | ID: mdl-38166645

RESUMEN

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.


Asunto(s)
Enfermedad Celíaca , Adulto , Humanos , Femenino , Masculino , Enfermedad Celíaca/diagnóstico , Calidad de Vida , Dieta Sin Gluten , Salud Mental , Encuestas y Cuestionarios , Cooperación del Paciente
4.
Dig Dis Sci ; 68(7): 2899-2907, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37024737

RESUMEN

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.


Asunto(s)
Enfermedad Celíaca , Calidad de Vida , Adulto , Humanos , Enfermedad Celíaca/diagnóstico , Estudios Transversales , Cooperación del Paciente , Actitud , Dieta Sin Gluten
5.
Diabet Med ; 39(4): e14738, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-34741779

RESUMEN

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].


Asunto(s)
Diabetes Mellitus Tipo 1 , Trastornos de Alimentación y de la Ingestión de Alimentos , Adolescente , Niño , Diabetes Mellitus Tipo 1/complicaciones , Diabetes Mellitus Tipo 1/terapia , Estudios de Factibilidad , Trastornos de Alimentación y de la Ingestión de Alimentos/prevención & control , Humanos , Padres , Ensayos Clínicos Controlados Aleatorios como Asunto , Encuestas y Cuestionarios
6.
J Urban Health ; 99(3): 385-408, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35378716

RESUMEN

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.


Asunto(s)
Conducta Autodestructiva , Suicidio , Humanos , Irlanda/epidemiología , Conducta Autodestructiva/epidemiología , Ideación Suicida , Reino Unido/epidemiología
7.
BMC Pregnancy Childbirth ; 22(1): 763, 2022 Oct 12.
Artículo en Inglés | MEDLINE | ID: mdl-36224526

RESUMEN

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.


Asunto(s)
COVID-19 , Telemedicina , Niño , Humanos , Salud Mental , Pandemias , Responsabilidad Parental/psicología , Padres/psicología
8.
BMC Pregnancy Childbirth ; 22(1): 798, 2022 Oct 29.
Artículo en Inglés | MEDLINE | ID: mdl-36309652

RESUMEN

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.


Asunto(s)
Traumatismos del Nacimiento , Servicios de Salud Materna , Niño , Femenino , Embarazo , Humanos , Madres/psicología , Padres/psicología , Relaciones Interpersonales , Investigación Cualitativa
9.
BMC Health Serv Res ; 21(1): 167, 2021 Feb 23.
Artículo en Inglés | MEDLINE | ID: mdl-33618733

RESUMEN

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.


Asunto(s)
Cuidadores/psicología , Prestación Integrada de Atención de Salud , Calidad de Vida , Adolescente , Niño , Familia , Servicios de Salud , Humanos , Londres , Pediatría , Investigación Cualitativa
10.
J Pediatr Gastroenterol Nutr ; 70(3): 295-303, 2020 03.
Artículo en Inglés | MEDLINE | ID: mdl-31789773

RESUMEN

OBJECTIVES: A diagnosis of celiac disease (CD) requires individuals to adopt a strict gluten-free diet. As children with CD must rely on their caregivers for guidance and support with managing the gluten-free diet, CD may challenge the caregiver's emotional and social well-being. The primary objective of this mixed-methods systematic review was to synthesize research investigating the impact of CD on caregiver's well-being. METHODS: Five databases were systematically searched from 1990 to 2018 to identify all empirical studies that assessed well-being in caregivers of children (0-18 years) with CD. Qualitative and quantitative data were extracted separately before being integrated to explore key themes across the studies. RESULTS: Twelve studies were identified that explored the well-being of caregivers of children with CD (3 qualitative, 9 quantitative), reporting on 665 caregivers. The quality of evidence was limited across studies. Synthesis of results revealed 3 themes (Caregiver Responsibility, Caregiver Well-Being and Concern for Child's Health, Implications for the Family) describing the impact of a child with CD on caregiver well-being. CONCLUSIONS: Caregivers of children with CD may experience difficulties that impact their well-being; specific difficulties identified included the impact of caregivers' social activities, finances, and anxiety. The findings detailed in this review point toward factors that may guide health care personnel to provide support for the caregivers of children with CD.


Asunto(s)
Cuidadores , Enfermedad Celíaca , Niño , Dieta Sin Gluten , Familia , Humanos
11.
Appetite ; 107: 260-267, 2016 12 01.
Artículo en Inglés | MEDLINE | ID: mdl-27521165

RESUMEN

PURPOSE: The need for dietary management in coeliac disease may lead to the development of disordered eating. This study examined the prevalence of disordered eating and factors predicting disordered eating in women with coeliac disease, compared with other dietary-controlled conditions. METHODS: A cross-sectional, online survey assessing psychological well-being, disordered eating behaviours (Eating Attitudes Test 26 (EAT-26); Binge Eating Scale (BES)) was distributed using online forums, to those with coeliac disease (N = 157), inflammatory bowel disease (N = 116), type two diabetes (N = 88) and healthy controls (N = 142). Hierarchical regressions were conducted to explore and compare the predictors of EAT-26 and BES scores across all groups. Within the coeliac disease group, a cluster analysis was conducted to examine types of disordered eating. RESULTS: Higher EAT-26 scores were found in those with coeliac disease and inflammatory bowel disease compared with healthy controls and type two diabetes; participants with a chronic health condition had higher BES than healthy control participants. The factors associated with EAT-26 scores differed across the dietary-controlled health conditions, with dietary management being important for those with coeliac disease. Psychological distress was associated with binge-eating behaviour across all groups. Cluster analyses found two types of disordered eating in coeliac disease; a binge eating type and a restrictive type. CONCLUSIONS: Disordered eating attitudes and behaviours are more prevalent in participants with chronic health conditions relative to healthy controls. The presence of binge eating behaviours in coeliac disease may be related to non-coeliac disease specific factors such as the distress associated with dietary-controlled illness. EAT-26 scores in coeliac disease are associated with disease specific factors, unique to following the gluten-free diet. These factors are important for identifying and supporting those with coeliac disease and disordered eating.


Asunto(s)
Enfermedad Celíaca/psicología , Trastornos de Alimentación y de la Ingestión de Alimentos/psicología , Adolescente , Adulto , Anciano , Ansiedad/etiología , Ansiedad/psicología , Enfermedad Celíaca/complicaciones , Enfermedad Celíaca/dietoterapia , Estudios Transversales , Dieta/psicología , Ingestión de Alimentos/psicología , Trastornos de Alimentación y de la Ingestión de Alimentos/etiología , Femenino , Glútenes/administración & dosificación , Glútenes/efectos adversos , Conductas Relacionadas con la Salud , Humanos , Persona de Mediana Edad , Prevalencia , Automanejo , Encuestas y Cuestionarios , Adulto Joven
12.
Arch Dis Child ; 109(6): 488-496, 2024 May 17.
Artículo en Inglés | MEDLINE | ID: mdl-38383134

RESUMEN

BACKGROUND: We assessed the biopsychosocial needs and key health drivers among children living with a common chronic illness, as baseline for a cluster randomised controlled trial of a child health system strengthening intervention. METHODS: Cross-sectional data were analysed from a large population sample of children from South London with asthma, eczema or constipation, as exemplar tracer conditions of a new integrated care service. Descriptive and regression analyses, accounting for sociodemographic factors, investigated social needs, psychosocial outcomes and quality of life associated with poor symptom control. RESULTS: Among 7779 children, 4371 children (56%) had at least one uncontrolled physical health condition. Across the three domains of physical health, mental health and social needs, 77.5% of children (n=4304 of 5554) aged 4-15 years had at least one unmet need, while 16.3% of children had three unmet needs. Children from the most socioeconomically disadvantaged quintile had a 20% increased risk of at least one poorly controlled physical condition (risk ratio (RR)=1.20, 95% CI: 1.11 to 1.31, p<0.001) compared with those from the least disadvantaged quintile. There was an 85% increased risk of clinically important mental health needs among children with uncontrolled asthma (RR=1.85, 95% CI: 1.65 to 2.07, p<0.001), 57% for active constipation (RR=1.57, 95% CI: 1.12 to 2.20, p<0.01) and 39% for uncontrolled eczema (RR=1.39, 95% CI: 1.24 to 1.56, p<0.001). Health-related quality of life was associated with poor symptom control. CONCLUSIONS: There is a large burden of unmet biopsychosocial needs among children with chronic illness, signalling an urgent need for prevention, early intervention and integrated biopsychosocial care.


Asunto(s)
Asma , Estreñimiento , Calidad de Vida , Humanos , Niño , Adolescente , Enfermedad Crónica/psicología , Masculino , Femenino , Preescolar , Estudios Transversales , Asma/psicología , Asma/terapia , Asma/epidemiología , Estreñimiento/psicología , Estreñimiento/epidemiología , Salud Infantil , Eccema/psicología , Eccema/terapia , Eccema/epidemiología , Londres/epidemiología , Necesidades y Demandas de Servicios de Salud , Evaluación de Necesidades , Salud Mental , Servicios de Salud del Niño , Factores Socioeconómicos
13.
J Acad Nutr Diet ; 2023 Nov 30.
Artículo en Inglés | MEDLINE | ID: mdl-38040116

RESUMEN

BACKGROUND: Celiac disease (CD) is an autoimmune condition managed by strict adherence to a gluten-free diet. Dietary choice has gendered connotations, and men with CD may face judgment from others when following a gluten-free diet. However, little is known about health-related stigma in men with CD. OBJECTIVES: The study aim was to explore the health-related stigma and challenges faced by men with CD, and the influence of CD on their lives. METHODS: Qualitative semistructured online interviews were conducted with men living with CD. PARTICIPANTS: Twenty adults (aged 18 years or older) identifying as men living in the United Kingdom, with self-reported CD, were recruited using social media and opportunistic sampling. STATISTICAL ANALYSES: Participants provided rich, detailed discussions about aspects of their experience of living with CD. Reflexive thematic analysis was used, with a critical-realist lens that enabled researchers to connect men's experiences within wider sociocultural constructs such as masculinity and social identity. RESULTS: Three themes were identified: CD threatens social inclusion; others' assumptions about CD and microaggressions have a psychological influence, and masculine norms, health-related stigma, and power dynamics influence men's health behaviors and everyday experience. Health-related stigma was found to be interconnected with these men's gendered social environment, suggesting that may be an important social and structural determinant of dietary, health-related, and health support-seeking behaviors in men diagnosed with CD. CONCLUSIONS: Contrary to prior assumptions, health-related stigma influences men with CD of all ages, particularly in social settings. The study unveils the complex interplay of individual beliefs, social norms, and power dynamics, in particular with other men, that influence individual beliefs and emphasize the performative aspect of food consumption. Internalized stigma and microaggressions influence men's well-being. To better support men with CD, health providers, charitable organizations, and the food industry should address the social influence of adherence to a gluten-free diet, in particular perceived threats to social status and inclusion, which may cause concern, influence food choice, and influence dietary adherence.

14.
Br J Health Psychol ; 27(3): 1026-1042, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35170152

RESUMEN

OBJECTIVE: Estimates indicate that individuals with coeliac disease are more likely to experience disordered eating and impaired well-being than healthy controls, but less is known about the mechanisms by which these factors are related. The aim of this study was to understand experiences of coeliac disease and influence on subsequent unhelpful eating and lifestyle patterns. METHODS: An online focus group discussion, hosted through a synchronous chat log, with adults living with coeliac disease was conducted. Seven individuals discussed their condition, lifestyle, and dietary changes post-diagnosis. Discussions were analysed using an interpretative phenomenological approach, a technique that enables new practical or research insight into health conditions based upon participants' experiences of their condition. RESULTS: Three themes were identified: (i) Nobody knew what was happening to my body; (ii) I am so afraid of being 'glutened' that it is central to my thoughts and anxieties; and (iii) I am frightened but I can keep myself safe by being a 'good' coeliac. These appeared to contribute to participant distress or unhelpful eating or lifestyle behaviours. Participants appeared to develop severe anxiety around gluten, and implausible beliefs around diet and lifestyle management that appear to initiate and maintain unhelpful eating behaviours and maladaptive lifestyles changes, that contribute to distress. CONCLUSIONS: Extending current knowledge, we propose a novel cognitive perspective on the development and maintenance of disordered eating in coeliac disease. Implications for how health providers can better support individuals with coeliac disease, and the role of dietary management, anxiety, and gastrointestinal symptoms in the development of disordered eating are discussed.


Asunto(s)
Enfermedad Celíaca , Trastornos de Alimentación y de la Ingestión de Alimentos , Adulto , Enfermedad Celíaca/complicaciones , Enfermedad Celíaca/diagnóstico , Dieta Sin Gluten/psicología , Glútenes , Humanos , Estilo de Vida
15.
Front Psychol ; 13: 1044664, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36478936

RESUMEN

This study aimed to understand the relationship between paternal depression, parenting behavior and child developmental outcomes during the SARS-CoV-2 (COVID) pandemic. In addition, the paternal experience of the pandemic, such as the impact of lockdowns, was explored. Fathers of children aged 6-11 years old (n = 87) were recruited for an online cross-sectional survey. Data was collected through questionnaires and open-ended comments. Regression analysis indicated a higher level of self-reported depressive symptomology in fathers more severely impacted by the pandemic across financial, familial and health domains. Further, COVID-19 impact, but not paternal depression, was linked to fewer authoritative parenting behaviors, characterized as lower warmth and responsiveness. Paternal pandemic impact and depression symptoms were independently predictive of child cognitive scores, and both were associated with emotional and behavioral outcomes. A content analysis of open-ended responses from fathers noted that concerns for their children, work and mental health were most prevalent during the pandemic. However, several responders also reported no change or positive facets of lockdowns related to the pandemic. These finds are discussed in the context of a possible behavioural mechanism of action accounting for the effect of these factors on child development. Clinical implications include targeted interventions for at risk groups as well as psychoeducation for fathers that acknowledge difference in paternal coping and support seeking.

16.
Artículo en Inglés | MEDLINE | ID: mdl-36992722

RESUMEN

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.

17.
Health Place ; 71: 102661, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-34492455

RESUMEN

PURPOSE: While the association between socioeconomic deprivation and children's poor health is clear, the complex pathways linking socioeconomic deprivation with access to care and health inequalities are less well understood. This analysis sought to understand the root cause of these inequalities by exploring how mothers living in deprived neighborhoods support their sick children, and their experiences with primary care. METHODS: Interview transcripts from eight mothers, living in socioeconomically deprived neighborhoods, were analyzed using interpretative phenomenological analysis. RESULTS: Participants described their experiences in three distinct themes. Each theme highlights the importance of the mother's agency, voice, and power in supporting their child's health, and the crucial role played by the health system in addressing, maintaining, or reinforcing health inequalities. Participants used several strategies to address these health inequalities, which included fighting against the health system, using past experiences to explain health needs, and support from friends and family. CONCLUSION: Although the health system is an essential resource to support families, encounters with primary care may fail to address health inequalities and may therefore exacerbate existing health inequalities for families living in deprived neighborhoods, irrespective of health system financing and ability to pay.


Asunto(s)
Madres , Características de la Residencia , Niño , Atención a la Salud , Femenino , Humanos , Estudios Longitudinales
18.
BMJ Open ; 11(11): e047085, 2021 11 24.
Artículo en Inglés | MEDLINE | ID: mdl-34819278

RESUMEN

INTRODUCTION: The Children and Young People's Health Partnership (CYPHP) Evelina London Model of Care is a new approach to integrated care delivery for children and young people (CYP) with common health complaints and chronic conditions. CYPHP includes population health management (services shaped by data-driven understanding of population and individual needs, applied in this case to enable proactive case finding and tailored biopsychosocial care), specialist clinics with multidisciplinary health teams and training resources for professionals working with CYP. This complex health system strengthening programme has been implemented in South London since April 2018 and will be evaluated using a cluster randomised controlled trial with an embedded process evaluation. This protocol describes the within-trial and beyond-trial economic evaluation of CYPHP. METHODS AND ANALYSIS: The economic evaluation will identify, measure and value resources and health outcome impacts of CYPHP compared with enhanced usual care from a National Health Service/Personal Social Service and a broader societal perspective. The study population includes 90 000 CYP under 16 years of age in 23 clusters (groups of general practitioner (GP) practices) to assess health service use and costs, with more detailed cost-effectiveness analysis of a targeted sample of 2138 CYP with asthma, eczema or constipation (tracer conditions). For the cost-effectiveness analysis, health outcomes will be measured using the Paediatric Quality of Life Inventory and quality-adjusted life years (QALYs) using the Child Health Utility 9 Dimensions (CHU-9D) measure. To account for changes in parental well-being, the Warwick-Edinburg Mental Well-being Scale will be integrated with QALYs in a cost-benefit analysis. The within-trial economic evaluation will be complemented by a novel long-term model that expands the analytical horizon to 10 years. Analyses will adhere to good practice guidelines and National Institute for Health and Care Excellence public health reference case. ETHICS AND DISSEMINATION: The study has received ethical approval from South West-Cornwall and Plymouth Research Ethics Committee (REC Reference: 17/SW/0275). Results will be submitted for publication in peer-reviewed journals, made available in briefing papers for local decision-makers, and provided to the local community through website and public events. Findings will be generalisable to community-based models of care, especially in urban settings. TRIAL REGISTRATION NUMBER: NCT03461848.


Asunto(s)
Salud Infantil , Calidad de Vida , Adolescente , Niño , Análisis Costo-Beneficio , Humanos , Londres , Ensayos Clínicos Controlados Aleatorios como Asunto , Medicina Estatal
19.
Pediatrics ; 145(1)2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31888959

RESUMEN

CONTEXT: Integrated care models may improve health care for children and young people (CYP) with ongoing conditions. OBJECTIVE: To assess the effects of integrated care on child health, health service use, health care quality, school absenteeism, and costs for CYP with ongoing conditions. DATA SOURCES: Medline, Embase, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, and the Cochrane Library databases (1996-2018). STUDY SELECTION: Inclusion criteria consisted of (1) randomized controlled trials, (2) evaluating an integrated care intervention, (3) for CYP (0-18 years) with an ongoing health condition, and (4) including at least 1 health-related outcome. DATA EXTRACTION: Descriptive data were synthesized. Data for quality of life (QoL) and emergency department (ED) visits allowed meta-analyses to explore the effects of integrated care compared to usual care. RESULTS: Twenty-three trials were identified, describing 18 interventions. Compared with usual care, integrated care reported greater cost savings (3/4 studies). Meta-analyses found that integrated care improved QoL over usual care (standard mean difference = 0.24; 95% confidence interval = 0.03-0.44; P = .02), but no significant difference was found between groups for ED visits (odds ratio = 0.88; 95% confidence interval = 0.57-1.37; P = .57). LIMITATIONS: Included studies had variable quality of intervention, trial design, and reporting. Randomized controlled trials only were included, but valuable data from other study designs may exist. CONCLUSIONS: Integrated care for CYP with ongoing conditions may deliver improved QoL and cost savings. The effects of integrated care on outcomes including ED visits is unclear.


Asunto(s)
Servicios de Salud del Adolescente , Servicios de Salud del Niño , Prestación Integrada de Atención de Salud , Necesidades y Demandas de Servicios de Salud , Calidad de la Atención de Salud , Absentismo , Adolescente , Servicios de Salud del Adolescente/economía , Servicios de Salud del Adolescente/normas , Servicios de Salud del Adolescente/estadística & datos numéricos , Asma/terapia , Niño , Salud Infantil , Servicios de Salud del Niño/economía , Servicios de Salud del Niño/normas , Servicios de Salud del Niño/estadística & datos numéricos , Preescolar , Intervalos de Confianza , Ahorro de Costo , Análisis Costo-Beneficio , Prestación Integrada de Atención de Salud/economía , Prestación Integrada de Atención de Salud/normas , Prestación Integrada de Atención de Salud/estadística & datos numéricos , Servicio de Urgencia en Hospital/estadística & datos numéricos , Costos de la Atención en Salud , Necesidades y Demandas de Servicios de Salud/economía , Necesidades y Demandas de Servicios de Salud/normas , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Humanos , Lactante , Recién Nacido , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Resultado del Tratamiento
20.
BMJ Open ; 9(8): e027301, 2019 09 03.
Artículo en Inglés | MEDLINE | ID: mdl-31481366

RESUMEN

INTRODUCTION: Children and young people (CYP) in many high-income settings have poor healthcare outcomes, especially those with long-term conditions (LTCs). Emergency and outpatient hospital service use is increasing unsustainably. To address these problems, the Children and Young People's Health Partnership (CYPHP) has developed and is evaluating an integrated model of care as part of a health systems strengthening programme across two boroughs of London, UK that are characterised by mixed ethnic populations and varying levels of deprivation. The CYPHP Evelina London model of care comprises proactive case-finding and triage, specialist clinics and transformative education and training for professionals working with CYP. Services are delivered by multidisciplinary health teams with an emphasis on increased coordination across primary, community and hospital settings and integration of physical and mental healthcare that accounts for the CYP's social context. METHODS AND ANALYSIS: The phased roll out of the CYPHP Evelina London model allows an opportunistic population-based evaluation using a cluster randomised controlled trial design. Seventy general practices across two London boroughs, grouped into 23 clusters, were randomised to provide either the CYPHP model of care (n=11) or enhanced usual care (n=12).The evaluation will measure the impact of the CYPHP Evelina London model of care on child and parent health and well-being, healthcare quality and health service use up to 2 years postimplementation. A population-level evaluation will use routinely collected pseudonymised healthcare data to conduct a service-use analysis for all CYP registered with a participating general practice (n=~90 000) with the rate of non-elective admissions as the primary outcome. We will seek consent from a subset of this population, with specific conditions (target n=2138) to assess the impact on patient-reported outcomes using the Paediatric Quality of Life Inventory (PedsQL) and Warwick-Edinburgh Mental Well-Being Scale (WEBWMS) as, respectively, the child- and parent-related primary outcomes. ETHICS AND DISSEMINATION: Ethics approval obtained from South West-Cornwall & Plymouth Research Ethics Committee. Results will be submitted for publication in peer-reviewed journals. Findings will be generalisable to community-based models of care, especially in urban settings. Our process evaluation will identify barriers and enablers of implementation and delivery of care salient to the context and condition. TRIAL REGISTRATION NUMBER: NCT03461848; Pre-results.


Asunto(s)
Salud Infantil , Medicina General/normas , Servicios de Salud/normas , Calidad de la Atención de Salud/normas , Calidad de Vida , Servicios Urbanos de Salud/organización & administración , Adolescente , Niño , Preescolar , Femenino , Humanos , Masculino , Encuestas y Cuestionarios , Adulto Joven
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