The Experience of Living with Type 1 Diabetes and Attending Clinic from the Perception of Children, Adolescents and Carers: Analysis of Qualitative Data from the DEPICTED Study

Lowes, Lesley Madeline; Eddy, Danielle; Channon, Susan Jane; McNamara, Rachel; Robling, Michael; Gregory, John Welbourn

doi:10.1016/j.pedn.2014.09.006

Cited by 54 publications

(76 citation statements)

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“…As such, and like the adolescent pump users studied by Lowes et al, 156 patients also described feeling less noticeable, stigmatised and, hence, detached from others as a consequence:…”

Section: P101mentioning

confidence: 76%

A cluster randomised trial, cost-effectiveness analysis and psychosocial evaluation of insulin pump therapy compared with multiple injections during flexible intensive insulin therapy for type 1 diabetes: the REPOSE Trial

Heller

White

Lee

et al. 2017

Health Technol Assess

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This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/).Editorial contact: journals.library@nihr.ac.ukThe full HTA archive is freely available to view online at www.journalslibrary.nihr.ac.uk/hta. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Health Technology Assessment journalReports are published in Health Technology Assessment (HTA) if (1) they have resulted from work for the HTA programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors.Reviews in Health Technology Assessment are termed 'systematic' when the account of the search appraisal and synthesis methods (to minimise biases and random errors) would, in theory, permit the replication of the review by others. HTA programmeThe HTA programme, part of the National Institute for Health Research (NIHR), was set up in 1993. It produces high-quality research information on the effectiveness, costs and broader impact of health technologies for those who use, manage and provide care in the NHS. 'Health technologies' are broadly defined as all interventions used to promote health, prevent and treat disease, and improve rehabilitation and long-term care.The journal is indexed in NHS Evidence via its abstracts included in MEDLINE and its Technology Assessment Reports inform National Institute for Health and Care Excellence (NICE) guidance. HTA research is also an important source of evidence for National Screening Committee (NSC) policy decisions.For more information about the HTA programme please visit the website: http://www.nets.nihr.ac.uk/programmes/hta This reportThe research reported in this issue of the journal was funded by the HTA programme as project number 08/107/01. The contractual start date was in June 2011. The draft report began editorial review in March 2016 and was accepted for publication in July 2016. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HTA editors and publisher have tried to ensure the accuracy of the authors' report and would like to thank the reviewers for their constructive comments on the draft document. However, they do not accept liability for damages or losses arising from material published in this report.This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HTA programme or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HTA programme or the Department of Health. Published by the NIH...

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“…As such, and like the adolescent pump users studied by Lowes et al, 156 patients also described feeling less noticeable, stigmatised and, hence, detached from others as a consequence:…”

Section: P101mentioning

confidence: 76%

A cluster randomised trial, cost-effectiveness analysis and psychosocial evaluation of insulin pump therapy compared with multiple injections during flexible intensive insulin therapy for type 1 diabetes: the REPOSE Trial

Heller

White

Lee

et al. 2017

Health Technol Assess

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“…The need for many of the younger children and adolescents to talk before clinic and understand what could happen in clinic mirrors evidence from other specialist clinics (Lowes et al, 2015). For several children learning to adjust to life with a DSD had specific issues, that is using public toilets.…”

Section: Discussionmentioning

confidence: 99%

Exploring stakeholder experiences of interprofessional teamwork in sex development outpatient clinics

Sanders

Edwards

Keegan

2017

Journal of Interprofessional Care

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Adopting an interprofessional team approach to care of the child with rare conditions that can affect sex development (DSD) has been advocated by a consensus document within the last decade. In the United Kingdom, the approach appears orientated towards an interprofessional model with the integration of separate professions working in single consultations with families working collaboratively to focus on care using a person and family-centred lens. This concurrent mixed-methods UK study using questionnaires, observation, and interviews aimed to examine professionals', patients', and parents' expectations and interactions during DSD clinic. In adapting a model of patient and family-centred care, we were able to analyse the dimensions of care at the micro-, meso-, and macro-level. The micro captured the unique nature of the bio-psychosocial aspects of DSD, professional capabilities, and communication. The meso examined shared learning and objective setting as well as aspects of knowledge translation. The macro focused on the operational aspects and the emancipatory knowing embedded within DSD care. Complete data from participants (n = 105) were analysed from 47 outpatient clinical consultations and are reported as numerical data, tables, and participants' voices. Interestingly, all participants identified topics or concerns that were absent in the dialogues during consultation. Our findings informed the adaptation of a patient-focused model, thereby supporting the development of the concept of patient-centeredness, integration, and collaboration. This framework may serve as a platform, embedding existing evaluative tools and acknowledging the patient and professional partnership necessary in DSD care. ARTICLE HISTORY

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“…Se cree que el proceso autoinmune ocurre durante meses o años antes de que se produzcan síntomas clínicos (poliuria, polidipsia, polifagia, pérdida de peso) y se diagnostique hiperglicemia 1 . Es una enfermedad compleja e invasiva de la infancia 2 , de difícil control pues, para el individuo afectado, conlleva variadas complicaciones tanto físicas, clínicas y psicosociales 4 . La Asociación Americana de la Diabetes (ADA) y la Organización Mundial de la Salud (OMS) tiene como criterios diagnósticos: glicemia en ayunas con un nivel de 126 mg/dL por lo menos dos veces, glicemia a las 2 h post 75 g de glucosa mayor a 200 mg/dL, síntomas de diabetes y glicemia mayor a 200 mg/dL, o hemoglobina glicosilada (HbA1c) > 6,5% 1 .…”

Section: Aspectos Clínicos Y Epidemiológicosunclassified

“…La Asociación Americana de la Diabetes (ADA) y la Organización Mundial de la Salud (OMS) tiene como criterios diagnósticos: glicemia en ayunas con un nivel de 126 mg/dL por lo menos dos veces, glicemia a las 2 h post 75 g de glucosa mayor a 200 mg/dL, síntomas de diabetes y glicemia mayor a 200 mg/dL, o hemoglobina glicosilada (HbA1c) > 6,5% 1 . La incidencia de DMT1 está aumentando en todo el mundo 1,8,9 , siendo esta enfermedad la tercera condición crónica más común en la infancia 2 . Es por esto por lo que el año 2006 la ONU puso como foco a la diabetes y la denominó como una de las principales amenazas para la salud mundial 5 .…”

Section: Aspectos Clínicos Y Epidemiológicosunclassified

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Impacto psicosocial de la diabetes mellitus tipo 1 en niños, adolescentes y sus familias. Revisión de la literatura

Henríquez-Tejo¹,

Cartes‐Velásquez

2018

Rev. chil. pediatr.

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ResumenLa diabetes mellitus tipo 1 es la patología endocrina crónica más común en niños. El tratamiento incluye dieta, actividad física, medicación con insulina y un autocontrol adecuado. Este autocontrol puede ser dificultoso, provocando que niños, adolescentes y sus familias sufran diversas complicaciones psicosociales. Existe una relación inversa entre autocontrol y presencia de complicaciones psicosociales, siendo los principales problemas ansiedad y depresión, donde los adolescentes llegan a ser 2,3 veces más propensos a presentar problemas de salud mental. Las familias se ven afectadas inicialmente en el período de debut por un estado de shock, con sentimientos de angustia e ira. Los necesarios cambios de hábitos y estilos de vida pueden generar problemas psicosociales entre los que destacan trastornos ansiosos, depresivos y alimenticios. Posteriormente, el niño o adolescente y su grupo familiar pueden transitar a un nuevo equilibrio caracterizado por un buen autocontrol y adherencia al tratamiento o profundizar los trastornos individuales y grupales, trastornos que pueden reaparecer, especialmente en la adolescencia. El tratamiento integral de la diabetes mellitus tipo 1 requiere atender estos aspectos mediante equipos multidisciplinarios que incluyen profesionales médicos y del ámbito psicosocial. En esta revisión se analizan los principales aspectos relacionados al impacto psicosocial en niños y adolescentes con diabetes mellitus tipo 1 y sus familias. Keywords:Diabetes mellitus type 1; psychosocial impact; family AbstractType 1 diabetes mellitus is the most common chronic endocrine pathology among children. Treatment includes diet, physical activity, insulin medication, and proper self-control. This self-control may be difficult, resulting in children, adolescents and their families suffering diverse psychosocial complications. There is an inverse relationship between self-control and psychosocial complications, the main problems being anxiety and depression, where adolescents are 2.3 times more likely to have mental

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The Experience of Living with Type 1 Diabetes and Attending Clinic from the Perception of Children, Adolescents and Carers: Analysis of Qualitative Data from the DEPICTED Study

Cited by 54 publications

References 32 publications

A cluster randomised trial, cost-effectiveness analysis and psychosocial evaluation of insulin pump therapy compared with multiple injections during flexible intensive insulin therapy for type 1 diabetes: the REPOSE Trial

A cluster randomised trial, cost-effectiveness analysis and psychosocial evaluation of insulin pump therapy compared with multiple injections during flexible intensive insulin therapy for type 1 diabetes: the REPOSE Trial

Exploring stakeholder experiences of interprofessional teamwork in sex development outpatient clinics

Impacto psicosocial de la diabetes mellitus tipo 1 en niños, adolescentes y sus familias. Revisión de la literatura

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