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AIMS: Facilitated self-management support programmes have become central to the treatment of chronic diseases including diabetes. For many children and young people with diabetes (CYPD), the impact on glycated haemoglobin (HbA1c ) and a range of self-management behaviours promised by these programmes remain unrealised. This warrants an appraisal of current thinking and the existing evidence to guide the development of programmes better targeted at this age group. METHODS: Create a narrative review of systematic reviews produced in the last 3 years that have explored the impact on CYPD of the four key elements of self-management support programmes: education, instruction and advice including peer support; psychological counselling via a range of therapies; self-monitoring, including diaries and telemetric devices; and telecare, the technology-enabled follow-up and support by healthcare providers. RESULTS: Games and gamification appear to offer a promising means of engaging and educating CYPD. Psychological interventions when delivered by trained practitioners, appear to improve HbA1c and quality of life although effect sizes were small. Technology-enabled interactive diaries can increase the frequency of self-monitoring and reduce levels of HbA1c . Telecare provided synchronously via telephone produced significant improvements in HbA1c . CONCLUSIONS: The cost-effective flexibility of increasing the reliance on technology is an attractive proposition; however, there are resource implications for digital connectivity in underserved populations. The need remains to improve the understanding of which elements of each component are most effective in a particular context, and how to optimise the influence and input of families, caregivers and peers.
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Diabetes Mellitus , Automanejo , Humanos , Niño , Adolescente , Calidad de Vida , Revisiones Sistemáticas como Asunto , TeléfonoRESUMEN
AIMS: Children and young people with diabetes (CYPD) from socio-economically deprived and/or ethnic minority groups tend to have poorer glucose control and greater risk of diabetes-related complications. In this systematic review of qualitative evidence (qualitative evidence synthesis, QES), we aimed to explore the experiences and views of clinical encounters in diabetes care from the perspectives of CYPD and their family/carers from underserved communities and healthcare professionals in diabetes care. METHODS: We searched 6 databases to March 2022 with extensive search terms, and used a thematic synthesis following methods of Thomas and Harden. RESULTS: We identified 7 studies and described 11 descriptive themes based on primary and secondary constructs. From these, three "analytical themes" were developed. (1) "Alienation of CYPD" relates to their social identity and interaction with peers, family and health service practitioners in the context of diabetes self- and family/carer management and is impacted by communication in the clinical encounter. (2) "Empowerment of CYPD and family/carers" explores families' understanding of risks and consequences of diabetes and taking responsibility for self- and family/carer management in the context of their socio-cultural background. (3) "Integration of diabetes (into self and family)" focuses on the ability to integrate diabetes self-management into the daily lives of CYPD and family/carers beyond the clinical consultation. CONCLUSIONS: The analytical themes are interdependent and provide a conceptual framework from which to explore and strengthen the therapeutic alliance in clinical encounters and to foster greater concordance with treatment plans. Communicating the biomedical aspects of managing diabetes in the clinical encounter is important, but should be balanced with addressing socio-emotional factors important to CYPD and family/carers.
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Diabetes Mellitus , Etnicidad , Niño , Humanos , Adolescente , Control Glucémico , Grupos Minoritarios , Atención a la Salud , Investigación CualitativaRESUMEN
AIMS: With numerous and continuing attempts at adapting diabetes self-management support programmes to better account for underserved populations, its important that the lessons being learned are understood and shared. The work we present here reviews the latest evidence and best practice in designing and embedding culturally and socially sensitive, self-management support programmes. METHODS: We explored the literature with regard to four key design considerations of diabetes self-management support programmes: Composition - the design and content of written materials and digital tools and interfaces; Structure - the combination of individual and group sessions, their frequency, and the overall duration of programmes; Facilitators - the combination of individuals used to deliver the programme; and Context - the influence and mitigation of a range of individual, socio-cultural, and environmental factors. RESULTS: We found useful and recent examples of design innovation within a variety of countries and models of health care delivery including Brazil, Mexico, Netherlands, Spain, United Kingdom, and United States of America. Within Composition we confirmed the importance of retaining best practice in creating readily understood written information and intuitive digital interfaces; Structure the need to offer group, individual, and remote learning options in programmes of flexible duration and frequency; Facilitators where the benefits of using culturally concordant peers and community-based providers were described; and finally in Context the need to integrate self-management support programmes within existing health systems, and tailor their various constituent elements according to the language, resources, and beliefs of individuals and their communities. CONCLUSIONS: A number of design principles across the four design considerations were identified that together offer a promising means of creating the next generation of self-management support programme more readily accessible for underserved communities. Ultimately, we recommend that the precise configuration should be co-produced by all relevant service and patient stakeholders and its delivery embedded in local health systems.
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Diabetes Mellitus , Automanejo , Humanos , Diabetes Mellitus/terapia , Brasil , Conductas Relacionadas con la Salud , LenguajeRESUMEN
BACKGROUND: This paper details the development of the Adolescent Intrinsic Motivation 'AIM2Change' intervention to support weight-management in young people previously unable to make changes whilst attending a tier 3 weight management service for children and young people. AIM2Change is an acceptance and commitment therapy based intervention that will be delivered one-to-one online over a seven-week period. METHODS: To develop this intervention, we have triangulated results from a qualitative research study, patient and public involvement groups (PPI) and a COM-B (capability, opportunity, motivation, behaviour) analysis, in a method informed by the person-based approach. RESULTS: The integrated development approach yielded a broad range of perspectives and facilitated the creation of a tailored intervention to meet the needs of the patient group whist remaining pragmatic and deliverable. CONCLUSIONS: The next steps for this intervention will be in-depth co-development of the therapy sessions with service users, before implementing a proof of concept trial.
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Terapia de Aceptación y Compromiso , Obesidad Infantil , Adolescente , Humanos , Motivación , Obesidad Infantil/terapia , Investigación Cualitativa , Autocuidado/métodosRESUMEN
BACKGROUND: Diet is a common concern among people with an ileostomy as it can be associated with serious and burdensome complications, for example, dehydration and obstruction, and dietary advice is often unsatisfactory. In this study, we explored healthcare professionals' (HCPs) perspectives on dietary advice for ileostomy management. METHODS: Semi-structured interviews were conducted with HCPs, from multiple professions, who provide dietary advice to patients with an ileostomy. A framework approach to thematic analysis was used to understand and compare HCPs' experiences, beliefs and attitudes that influence how dietary advice is provided and the effectiveness of dietary management. RESULTS: Findings from interviews with 21 HCPs, across 3 hospitals, related to 7 key themes: tailoring of dietary advice to the patient, patient autonomy and communication, HCP knowledge and understanding, patient pathway, mixed messages, access to formal and social support and patient understanding and relationship with dietary advice. Profession was a strong determinator of what and how dietary advice is provided; however, closer team working increased consistency in dietary advice. Lack of scientific research and consensus contributes to mixed messages and reduced confidence in dietary advice for people with an ileostomy. Due to individual differences between patients, experiential learning with diet is key to self-management and is encouraged in a controlled way by HCPs; however, a lack of 'one-size-fits-all' guidance can be difficult for some. CONCLUSION: The study findings should inform HCPs caring for patients with an ileostomy, and researchers designing and evaluating interventions, to improve how patients receive dietary advice for ileostomy management.
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Personal de Salud , Ileostomía , Humanos , Personal de Salud/educación , Dieta , Educación en Salud , Atención a la Salud , Investigación CualitativaRESUMEN
BACKGROUND: Debate remains regarding whether to recommend a low iodine diet (LID) before radioactive-iodine treatment and its duration and stringency. This mixed-methods review aimed to determine if iodine status affects treatment success, the most effective diet to reduce iodine status, and how LID impacts wellbeing. METHODS: Five electronic databases were searched until February 2021. An effectiveness synthesis (quantitative studies) and views synthesis (qualitative, survey, and experience-based evidence) were conducted individually and then integrated. Quality assessment was undertaken. RESULTS: Fifty-six quantitative and three qualitative studies were identified. There was greater ablation success for those with an iodine status of <50 mcg/L (or mcg/gCr) compared with ≥250 (odds ratio [OR] = 2.63, 95% confidence interval [CI], 1.18-5.86, n = 283, GRADE certainty of evidence very low). One study compared <50 mcg/L (or mcg/gCr) to 100-199 and showed similar rates of ablation success (OR = 1.59, 95% CI, 0.48-6.15, n = 113; moderate risk of bias). People following a stricter LID before ablation had similar rates of success to a less-strict diet (OR = 0.67, 95% CI, 0.26-1.73, n = 256, GRADE certainty of evidence very low). A stricter LID reduced iodine status more than a less strict (SMD = -0.40, 95% CI, -0.56 to -0.24, n = 816), and reduction was seen after 1 and 2 weeks. The main challenges were a negative impact on psychological health, over restriction, confusion, and difficulty for sub-groups. CONCLUSIONS: Although a LID of 1-2 weeks reduces iodine status, it remains unclear whether iodine status affects treatment success as only a few low-quality studies have examined this. LIDs are challenging for patients. Higher-quality studies are needed to confirm whether a LID is necessary.
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Yodo , Neoplasias de la Tiroides , Humanos , Radioisótopos de Yodo/uso terapéutico , Neoplasias de la Tiroides/radioterapia , Neoplasias de la Tiroides/cirugía , Dieta , Resultado del TratamientoRESUMEN
BACKGROUND: Walking is a simple activity that could help to reduce the prevalence of chronic diseases in all populations. Furthermore, an inverse dose-response relationship exists between steps taken and risk of premature death and cardiovascular events in middle-aged and older adults. There is a lack of information on how to effectively engage older adults around retirement age in walking. This qualitative study explored attitudes towards walking in older people with regard to habits, intensity, preferences and strategies for increasing walking behaviour. METHODS: In-depth qualitative interviews were conducted with 26 older adults who were either close to retirement or recently retired. An inductive thematic analysis was conducted. RESULTS: Three themes were identified from the data; 1) Engagement and perceived value of walking; was focused on the meaning of walking for the participant and the attributes they associate with their walking practice. 2) Integration and connectivity of walking; was focused on how participants integrate walking in their daily lives and whether walking can be practiced as a viable means of connectivity. 3) Strategies to increase walking; was focused on what factors motivate participants in their walking practice and what strategies they perceived to be beneficial to increase walking distance and intensity at an individual level. DISCUSSION: The views of walking in people of retirement age were represented within 3 key themes. The factors contained in these themes that may influence future walking practice are discussed with regard to future strategies to promote walking in the retirement life change. CONCLUSION: It may be beneficial to promote qualitative aspects of walking practice and strive for regularity rather than intensity of walking to accrue the social, psychological and intellectual benefits reported by individuals in the retirement life change.
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Calidad de Vida , Jubilación , Anciano , Actitud , Hábitos , Humanos , Persona de Mediana Edad , Investigación Cualitativa , Jubilación/psicología , CaminataRESUMEN
BACKGROUND: To determine the views of Clinical Directors working in the United Kingdom (U.K.) Cleft Service with regard to centralisation, commissioning and impact on cleft service provision. METHODS: In-depth qualitative interviews were conducted with 11 Clinical Directors representing regional cleft services. Interviews were transcribed verbatim, a coding frame was developed by two researchers and transcripts were coded using a thematic, 'interpretive' approach. RESULTS: Clinical Directors perceived the commissioning of cleft services in the U.K. to be dependent upon historical agreements and individual negotiation despite service centralisation. Furthermore, Clinical Directors perceived unfairness in the commissioning and funding of cleft services and reported inconsistencies in funding models and service costs that have implications for delivering an equitable cleft service with an effective Multidisciplinary Team. CONCLUSIONS: National Health Service (NHS) commissioning bodies can learn lessons from the centralisation of cleft care. Clinical Directors' accounts of their relationships with specialist commissioning bodies and their perspectives of funding cleft services may serve to increase parity and improve the commissioning of cleft services in the U.K.
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Actitud del Personal de Salud , Labio Leporino/terapia , Fisura del Paladar/terapia , Ejecutivos Médicos/psicología , Odontología Estatal/organización & administración , Medicina Estatal/organización & administración , Presupuestos , Labio Leporino/economía , Fisura del Paladar/economía , Contratos , Costos y Análisis de Costo , Vías Clínicas/economía , Vías Clínicas/organización & administración , Administración Financiera , Humanos , Negociación , Grupo de Atención al Paciente/economía , Grupo de Atención al Paciente/organización & administración , Atención Dirigida al Paciente/economía , Atención Dirigida al Paciente/organización & administración , Admisión y Programación de Personal/economía , Admisión y Programación de Personal/organización & administración , Atención Primaria de Salud/economía , Atención Primaria de Salud/organización & administración , Investigación Cualitativa , Odontología Estatal/economía , Medicina Estatal/economía , Reino UnidoRESUMEN
Time-limited eating is a dietary intervention whereby eating is limited to a specific window of time during the day. The usual eating windows of adults, and how these can be manipulated for dietary interventions, is well documented. However, there is a paucity of data on eating windows of young people, the manipulation of which may be a useful intervention for reducing obesity. This paper reviewed the existing literature on the eating windows of children and adolescents, aged 5-18 years, plus clock times of first and last intakes and variations by subgroup. Two databases (Medline and Embase) were searched for eligible papers published between February 2013 and February 2023, with forward searching of the citation network of included studies on Web of Science. Articles were screened, and data extracted, in duplicate by two independent reviewers. Ten studies were included, with both observational and experimental designs. Narrative synthesis showed large variations in eating windows with average values ranging from 9.7 h to 16.4 h. Meta-analysis, of five studies, showed a pooled mean daily eating window of 11.3 h (95% CI 11.0, 11.7). Large variations in eating windows exist across different study populations; however, the pooled data suggest that it may be possible to design time-limited eating interventions in paediatric populations aimed at reducing eating windows. Further high-quality research, investigating eating windows and subsequent associations with health outcomes, is needed.
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Conducta Alimentaria , Humanos , Adolescente , Niño , Preescolar , Factores de Tiempo , Femenino , Masculino , Ingestión de Alimentos/fisiologíaRESUMEN
Background: Physical activity (PA) is a key component in the management of type 2 diabetes. However, this population have low rates of PA engagement. Electrically assisted cycling has been identified as a means through which to increase PA by incorporating activity into daily life, while overcoming some of the barriers to conventional cycling. The determinants of e-cycling among people living with chronic disease are largely unknown. The aim of this research was to explore the determinants of e-cycling among individuals with type 2 diabetes using the Theoretical Domains Framework (TDF) and the Capability, Opportunity and Motivation for Behaviour change model (COM-B). This information is important for determining the suitability of future e-cycling initiatives and, if appropriate, inform future e-cycling interventions. Method: One-to-one semi structured interviews were conducted with 16 participants from the e-cycling arm of a pilot randomised controlled trial between September 2019 and April 2020. The TDF was used to develop the interview guide. The framework method of analysis was used, incorporating both deductive and inductive reasoning. A conceptual model of the factors that influence e-cycling in this population was created. Results: The most commonly reported TDF domains were skills, knowledge, belief about capabilities, belief about consequences and environmental context and resources. Specifically, e-bike training facilitated e-cycling engagement by providing participants with the skills, knowledge, and confidence needed to ride the e-bike and ride on the road. In addition, the enjoyment of e-cycling was a key facilitator to engagement. Participants engaged in e-cycling to improve their health rather than for environmental reasons. Most barriers to e-cycling related to the natural or physical environment. Conclusion: This study provides insight into the personal, social, and environmental factors associated with e-cycling in this population. The findings of this study can be used to develop a more refined e-cycling intervention targeting the factors identified as influencing e-cycling engagement. In addition, this information will help in the selection of mechanistic outcome measures for evaluation.
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BACKGROUND: Type 2 diabetes mellitus (T2DM) and its associated complications puts considerable strain on healthcare systems. With the global incidence of T2DM increasing, effective disease management is essential. Physical activity (PA) is a key component of T2DM management; however, rates of PA engagement are low in this population. Developing effective and sustainable interventions that encourage PA is a high priority. Electrically assisted bicycles are becoming increasingly popular and may increase PA in healthy adults. This study aimed to provide evidence of the feasibility of conducting a randomized controlled trial to evaluate the efficacy of an e-cycling intervention to increase PA and improve health in individuals with T2DM. METHODS: A parallel-group two-arm randomized, waitlist-controlled pilot study was conducted. Individuals were randomized to either an e-bike intervention or standard care. The intervention incorporated two one-to-one e-bike skills training and behavioural counselling sessions delivered by a community-based cycling charity, followed by a 12-week e-bike loan with two further sessions with the instructors. Feasibility was assessed via measures related to recruitment, retention and intervention implementation. Post-intervention interviews with instructors and participants explored the acceptability of the study procedures and intervention. Clinical, physiological and behavioural outcomes were collected at baseline and post-intervention to evaluate the intervention's potential. RESULTS: Forty participants (Mage = 57) were randomized, of which 34 were recruited from primary care practices. Thirty-five participants were retained in the trial. The intervention was conducted with high fidelity (> 80% content delivered). E-bike training provided participants with the skills, knowledge and confidence needed to e-bike independently. Instructors reported being more confident delivering the skills training than behavioural counselling, despite acknowledging its importance. The study procedures were found to be acceptable to participants. Between-group differences in change during the intervention were indicative of the interventions potential for improving glucose control, health-related quality of life and cardiorespiratory fitness. Increases in overall device measured moderate-to-vigorous PA behaviour following the intervention were found, and there was evidence that this population self-selected to e-cycle at a moderate intensity. CONCLUSIONS: The study's recruitment, retention, acceptability and potential efficacy support the development of a definitive trial subject to identified refinements. TRIAL REGISTRATION: ISRCTN, ISRCTN67421464 . Registered 17/12/2018.
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Weight loss maintenance can be difficult and ultimately unsuccessful, due to psychological, behavioural, social, and physiological influences. The present study investigated three strategies with the potential to improve weight maintenance success: daily weighing, missing an occasional meal, habitually changing high energy foods. The principal aim was to gain an understanding of attitudes to these strategies in participants who had recent experience of weight loss attempts, with or without maintenance. This was a qualitative study involving semi-structured interviews, with 20 participants aged 18-67 (twelve females), analysed using thematic analysis. Most participants disliked daily weighing and missing an occasional meal for long-term maintenance and were concerned about potential negative effects on mental health. All participants had experience of habitual changes to high energy foods and regarded this strategy as obvious and straightforward. Replacement of high energy foods was favoured over elimination. Participants preferred strategies that felt flexible, "normal" and intuitive and disliked those that were thought to have a negative impact on mental health. Further investigation is needed on whether concerns regarding mental health are well founded and, if not, how the strategies can be made more acceptable and useful.
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Mantenimiento del Peso Corporal , Pérdida de Peso , Femenino , Humanos , Mantenimiento del Peso Corporal/fisiología , Pérdida de Peso/fisiología , Investigación Cualitativa , Comidas , ActitudRESUMEN
INTRODUCTION: The coronavirus COVID-19 pandemic has radically compromised healthcare for people living with chronic conditions such as diabetes. Government-imposed restrictions to contain the spread of the virus have forced people to suddenly adjust their lifestyle. This study aimed to capture the impact of the pandemic on people living with diabetes and the views of these individuals on ways in which the information, advice and support they are receiving could be improved. RESEARCH DESIGN AND METHODS: An online anonymous survey was distributed across the UK during the first lockdown and initial easing. The survey comprised questions about confidence in diabetes self-management, resources used to obtain information, advice and support, and opinions on how these could be improved. Open-ended questions captured subjective experiences. RESULTS: The survey was completed by 773 adults with diabetes (69.2% type 1, 28.5% type 2). There was notable variability in the impact of the pandemic on confidence in self-management, with confidence having deteriorated most commonly in the ability to take care of own mental well-being (37.0% respondents) and improved most commonly in maintaining a healthy weight (21.1% respondents). 41.2% of respondents living alone reported not receiving any outside support. The quality of information, advice and support received from the healthcare team was rated poorly by 37.2%. Respondents sought greater communication and tailored advice from their care team, clear and consistent information from the government and news channels, and improved understanding of diabetes and its challenges from their personal networks and employers. CONCLUSION: Adjusting to the COVID-19 pandemic has strained the mental health and well-being of people living with diabetes. Diabetes care teams must receive assistance to support these individuals without risking further inequalities in access to healthcare. Equipping personal networks and employers with knowledge on diabetes and skills to support self-management may reduce the burden on the National Health Service.
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COVID-19 , Diabetes Mellitus , Adulto , Control de Enfermedades Transmisibles , Diabetes Mellitus/epidemiología , Diabetes Mellitus/terapia , Humanos , Pandemias , SARS-CoV-2 , Medicina Estatal , Encuestas y Cuestionarios , Reino Unido/epidemiologíaRESUMEN
OBJECTIVE: The objective of this review was to identify and map the evidence for oral dietary management of ileostomies. INTRODUCTION: Dietary advice is commonly provided for ileostomy management but can be inconsistent, conflicting, and inadequate. There is a lack of high-quality research investigating dietary management of ileostomies. This scoping review highlights gaps in the literature that need addressing to inform practice, and identifies dietary strategies and outcomes to be investigated in future studies. INCLUSION CRITERIA: Evidence relating to the use of oral dietary strategies to manage complications and nutritional consequences associated with having an ileostomy was included. Evidence included all types of original research (ie, quantitative and qualitative methodologies, expert opinion articles, and consensus guidelines). METHODS: This review followed JBI methodology for scoping reviews. A pre-determined search of 13 databases, including MEDLINE, Embase, and Web of Science, was conducted in August 2019. The search was not limited by date, but during screening, expert opinion evidence was limited to 2008 onward. Data extraction was carried out by two reviewers for each study/article using a database tool designed specifically for this review. Results are presented using a combination of tabular summaries and narrative reports. RESULTS: Thirty-one research studies were included: 11 experimental (including four crossover randomized controlled trials), three pre-post design, 13 observational (12 cross-sectional, one longitudinal), and four qualitative. Forty-four expert opinion articles/guidelines were also included. In experimental studies, nine nutrient modifications and 34 individual foods/drinks were investigated. In pre-post studies, 10 nutrient modifications, 80 foods/drinks, and 11 eating-related behaviors were investigated. In observational studies, eight nutrient modifications, 94 foods/drinks, and five eating-related behaviors were reported. In qualitative studies, two nutrient modifications, 17 foods/drinks, and one eating-related behavior were reported. In expert opinion articles/guidelines, recommendations relating to 51 nutrient modifications, 339 foods/drinks, and 23 eating-related behaviors were reported. Although large numbers of individual foods and drinks were suggested to be associated with outcomes relating to ileostomy management, findings from observational studies showed these were generally reported by <50% of people with an ileostomy. The most common nutrients reported in association with outcomes related to ileostomy management were fiber, fat, and alcohol. Across most outcomes and studies/expert opinion, low fiber and low fat were suggested to be beneficial, while alcohol was detrimental. Other nutrient associations frequently reported in expert opinion (but with minimal attention in research studies) included negative consequences of caffeinated drinks and positive effects of white starchy carbohydrates on stoma output. Output volume and consistency were the most commonly reported outcomes relating to ileostomy management across all study types. Flatulence and odor were also common outcomes in observational studies. CONCLUSIONS: This review found an abundance of literature, particularly expert opinion, reporting on dietary management for people with an ileostomy. However, this literature was highly heterogeneous in terms of dietary strategies and outcomes reported. It is likely that most dietary advice provided in practice is based on expert opinion with some supported by limited research. High-quality research investigating the effect of the dietary strategies identified in this review on commonly associated outcomes relating to ileostomy management is needed to improve evidence-based advice.
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Ileostomía , Estomas Quirúrgicos , Estudios Transversales , Dieta , Humanos , Ileostomía/efectos adversos , Investigación CualitativaRESUMEN
BACKGROUND: Barth syndrome (BS) is a life-threatening genetic disease caused by abnormal lipids in the mitochondria of cells and mostly affects young males. Those living with BS have severe exercise intolerance, lethargy and fatigue due to muscle disease which affect their daily life. Previous research suggests a need for qualitative exploration of self-regulation in BS and the inter-personal processes at play in family life. Therefore this study aimed to explore self-regulation and coping strategies and inter-personal responses in individuals and families affected by Barth syndrome. A multi-perspective qualitative study based on face to face, semi-structured, in-depth interviews with 11 participants (9-27 years, mean 15 years) with BS and/or their parents participating in a randomised double-blind clinical drug trial (CARDIOMAN). Interviews were transcribed verbatim and managed in NVivo prior to conducting a thematic analysis (AS and GH). RESULTS: Four key themes were identified: diagnosis and treatment, social support, identity and social integration, symptoms and self-regulation. The present findings suggest that self-regulation and coping in boys with BS was interpersonal and contingent on parental awareness such that parents were aware that their child had a limited energy reserve and that had to be managed due to the implications of fatigue for daily living. CONCLUSION: The findings support previous quantitative work demonstrating that children and parents tend to share a coherent view of BS. However, there is a need for greater awareness from others within the wider context of social and employment networks to minimise adverse implications for future life choices.
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Síndrome de Barth , Autocontrol , Adolescente , Adulto , Familia , Humanos , Masculino , Padres , Investigación Cualitativa , Apoyo SocialRESUMEN
OBJECTIVE: This study seeks to understand family's perceptions of their care at a paediatric weight management service, with a view to informing service improvement. DESIGN: A qualitative service review conducted via semistructured interviews with parents (n=11) and children (n=3) who attended the clinic. The recruitment was open to all, but those who were not succeeding in their weight-loss goals self-selected to participate. Self-Determination Theory was used as a framework to explore families' experiences of the clinic. SETTING: Recruitment occurred during clinical appointments and interviews were conducted over the phone in the days following the appointments. PATIENTS: The service sees paediatric patients with a body mass index >99th percentile, with comorbidities or safeguarding concerns. INTERVENTIONS: The clinic's service includes appointments typically every 2 months, with a multidisciplinary team including consultant endocrinologists, a dietician, a clinical psychologist, a social worker and a clinical nurse specialist. MAIN OUTCOME MEASURES: Families' feedback on the multi-disciplinary team (MDT) clinic, and their perceptions of how improvements could be made. RESULTS: Families perceive a lack of autonomy, competency and feel a lack of connectivity both in their lives broadly and within their experience at the clinic. CONCLUSIONS: Interventions in families struggling with weight improvements should see the clinical team placing more emphasis on working alongside parents to develop young people's sense of self-determination. Expectations must be set that success originates from changes outside of clinical appointments and that the clinical team is in place to support the family's development of sustainable, self-determined lifestyle habits.
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Obesidad/prevención & control , Participación del Paciente/psicología , Percepción/fisiología , Adolescente , Índice de Masa Corporal , Niño , Preescolar , Comorbilidad , Femenino , Humanos , Comunicación Interdisciplinaria , Entrevistas como Asunto , Estilo de Vida , Masculino , Obesidad/epidemiología , Obesidad/psicología , Padres/psicología , Participación del Paciente/estadística & datos numéricos , Investigación Cualitativa , Pérdida de PesoRESUMEN
BACKGROUND AND AIMS: International guidelines on the treatment of differentiated thyroid cancers (DTC) promote the use of low iodine diets (LID) prior to radioactive iodine remnant ablation (RIA), as high iodine status may interfere with radioiodine uptake. Most UK treatment centres adhere to these guidelines and advise people to consume a LID. There is limited research as to how people cope with the LID or its impact on daily life and wellbeing, and no studies have been conducted in the UK. This study explored peoples' views and experiences in relation to consuming a LID during treatment for DTC with RIA. METHODS: Twenty-eight semi-structured interviews were conducted with people from across three treatment centres where differing advice had been delivered regarding a LID. Interviews were recorded, transcribed verbatim and key themes were developed through inductive thematic analyses. RESULTS: Individuals advised to consume a LID believed that adhering to the diet would help their treatment. Most restricted their diets beyond what was recommended and there was confusion surrounding what they could eat as part of the diet. Food selection and preparation were important which included substitution of foods and ingredient checking. Being on the diet was considered to have both a physical and psychological impact. CONCLUSIONS: The findings of this study provide a qualitative insight into the lived experiences of people with DTC in relation to consuming a LID. The results have relevance for professionals providing dietary guidance at oncology centres treating patients with RIA therapy in the UK.
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Adenocarcinoma , Yodo , Neoplasias de la Tiroides , Dieta , Humanos , Radioisótopos de Yodo , Neoplasias de la Tiroides/radioterapiaRESUMEN
BACKGROUND: Untreated heterozygous familial hypercholesterolaemia (FH) causes high low-density lipoprotein cholesterol (LDL-C) levels and increased cardiovascular disease (CVD) risk. Despite pharmacological treatment, many treated individuals remain at higher CVD risk than non-affected individuals. This may be due to LDL-C targets not being met and presence of other CVD risk factors. Adhering to dietary and physical activity (PA) recommendations developed for individuals with FH may further reduce CVD risk. However, there is insufficient research to support the efficacy of adhering to these guidelines on LDL-C and other CVD risk factors. The need for studies to investigate the effectiveness of nutrition and PA interventions in the FH population has been widely recognised and recommended. This paper describes the protocol of a pilot, randomised controlled trial designed to evaluate the feasibility and acceptability of a specifically developed nutrition and PA intervention aimed at improving the dietary intakes and PA levels of families with FH. METHODS: A two-arm randomised waitlist-controlled pilot trial will be conducted across three National Health Service (NHS) sites in England, UK. Twenty-four young people with FH, aged 10-18 years, and their affected parent, will be recruited and randomly assigned to the intervention or waitlist and usual care control. The primary aim is to provide evidence for the feasibility and acceptability of delivering the intervention, explored quantitatively (rates of recruitment, retention and outcome measure completeness) and qualitatively (qualitative interviews). The secondary aim is to provide evidence for the potential efficacy of the intervention on dietary intake, PA, sedentary time, body composition, CVD risk factors and quality of life determined at baseline and endpoint assessments. The intervention will involve an hour-long consultation with a dietitian at baseline and four follow-up contacts across the 12-week intervention. It has been specifically developed for use with individuals with FH and incorporates behavioural change techniques to target identified enablers and barriers to adherence in this population. DISCUSSION: This trial will estimate the feasibility and acceptability of the nutrition and PA intervention delivered to young people and parents with FH. If appropriate, this study can be used to inform the design of an adequately powered definitive trial. TRIAL REGISTRATION: ISRCTN, ISRCTN24880714. Registered 07/06/2018, http://www.isrctn.com/ISRCTN24880714.
RESUMEN
OBJECTIVE: Familial hypercholesterolaemia (FH) elevates low-density lipoprotein cholesterol (LDL-C) and increases cardiovascular disease (CVD) risk. This study aimed to provide evidence for the feasibility of conducting a randomised controlled trial to evaluate the efficacy of an intervention designed to improve diet and physical activity in families with FH. DESIGN: A parallel, randomised, waitlist-controlled, feasibility pilot trial. SETTING: Three outpatient lipid clinics in the UK. PARTICIPANTS: Families that comprised children (aged 10-18 years) and their parent with genetically diagnosed FH. INTERVENTION: Families were randomised to either 12-week usual care or intervention. The behavioural change intervention aimed to improve dietary, physical activity and sedentary behaviours. It was delivered to families by dietitians initially via a single face-to-face session and then by four telephone or email follow-up sessions. OUTCOME MEASURES: Feasibility was assessed via measures related to recruitment, retention and intervention fidelity. Postintervention qualitative interviews were conducted to explore intervention acceptability. Behavioural (dietary intake, physical activity and sedentary time) and clinical (blood pressure, body composition and blood lipids) outcomes were collected at baseline and endpoint assessments to evaluate the intervention's potential benefit. RESULTS: Twenty-one families (38% of those approached) were recruited which comprised 22 children and 17 adults with FH, and 97% of families completed the study. The intervention was implemented with high fidelity and the qualitative data revealed it was well accepted. Between-group differences at the endpoint assessment were indicative of the intervention's potential for improving diet in children and adults. Evidence for potential benefits on physical activity and sedentary behaviours was less apparent. However, the intervention was associated with improvements in several CVD risk factors including LDL-C, with a within-group mean decrease of 8% (children) and 10% (adults). CONCLUSIONS: The study's recruitment, retention, acceptability and potential efficacy support the development of a definitive trial, subject to identified refinements. TRIAL REGISTRATION NUMBER: ISRCTN24880714.
Asunto(s)
Enfermedades Cardiovasculares , Hiperlipoproteinemia Tipo II , Adolescente , Adulto , Enfermedades Cardiovasculares/prevención & control , Niño , Dieta , Ejercicio Físico , Estudios de Factibilidad , HumanosRESUMEN
REVIEW QUESTION/OBJECTIVE: The objective of this scoping review is to identify and map the evidence for oral dietary management of ileostomies.The primary review question is: what oral dietary strategies for managing ileostomies in humans have been reported?The secondary review questions are: i) what types of evidence have considered oral dietary strategies for managing ileostomies; ii) what aspects of ileostomy management (for example, stoma output or flatulence) are the oral dietary strategies considered to affect; and iii) what sources do people with an ileostomy receive dietary advice from?