[Show abstract][Hide abstract] ABSTRACT: Objective Hypoglycaemia Unawareness (HU) affects approximately 25% of people with type 1 diabetes. People with HU are often reliant on family to detect hypoglycaemia and treat severe episodes. We explored the impact of HU on family members’ lives; their involvement in preventing and managing hypoglycaemia; and, their information and support needs.
Research Design and Methods Exploratory, qualitative design comprising in-depth interviews with 24 adult family members of people with type 1 diabetes and HU.
Results Family members described restricting their lives so they could help the person with HU detect and treat hypoglycaemia. Some described being very physically afraid of their partner/relative when they had a hypoglycaemic episode due to their aggressive and argumentative behaviour and personality changes; this could also make treatment administration difficult. Family members also reported feeling anxious and worried about the safety of the person with HU, particularly when they were left unsupervised. These concerns were often precipitated by traumatic events, such as discovering the person with HU in a coma. Family members could neglect their own health and wellbeing to care for the person with HU and resentment could build up over time. Family members highlighted extensive, unmet needs for information and emotional support; however, some struggled to recognise and accept their own need for help.
Conclusions Our findings reveal a caregiver group currently ‘in the shadow of the patient’ and in urgent need of information and emotional support. Raising awareness amongst healthcare professionals is essential and developing proactive support for family should be considered.
[Show abstract][Hide abstract] ABSTRACT: Reducing secondhand smoke exposure in the home is a key tobacco control goal, yet few studies have explored children's views and experiences of this. This study aimed to explore children's accounts of family members' smoking in the home and car and the impact of their socioeconomic circumstances on these.
Individual and friendship group interviews using topic guides and visual stimulus methods.
Two communities in Edinburgh, Scotland. One socioeconomically advantaged, one socioeconomically disadvantaged.
Thirty-eight children aged 10-15 years who had a close family member who smoked.
Focus group and interview topic guides FINDINGS: Participants in both communities expressed a strong dislike of family members' smoking and concern about the potential impact on the smoker's health. Participants described overt and covert acts of resistance including challenging relatives about their smoking, expressing disgust and concern, hiding or destroying cigarettes. Some acts were carried out in collusion with a non-smoking parent and/or sibling. Resistant acts were constrained by expectations of negative responses, which appeared to increase with age, wider social norms around smoking, and whether the young person smoked.
Some children and young people in the UK, irrespective of socioeconomic status, may actively oppose parents' smoking in the home and car although their influence may be limited by their position in the family and social norms.
[Show abstract][Hide abstract] ABSTRACT: To explore the experiences of people who have hypoglycaemia unawareness and its impact on their everyday lives.
In-depth interviews with 38 people with Type 1 diabetes who have hypoglycaemia unawareness. Data analysis used an inductive, thematic approach.
Participants reported imposed and self-imposed changes to their lives following onset of hypoglycaemia unawareness including: leaving employment, curtailing pastimes and spending more time at home or being supervised by others. However, some reported getting on with life by downplaying the significance and impact of their condition, which could put their health and safety at risk. Many relied on frequent self-monitoring of blood glucose and/or prompting from others to detect hypoglycaemia. Some expressed concerns about becoming a burden on family and/or responding in irrational and aggressive ways to others' suggestions to test for and treat hypoglycaemia. Participants reported responding best to composed and directive prompts from family. Health professionals mainly advised on clinical aspects, and did not enquire about the emotional and psychosocial impact of hypoglycaemia unawareness.
Hypoglycaemia unawareness can have a profound impact on people's confidence, careers and personal relationships. Healthcare professionals should pay more attention during consultations to the emotional and social aspects of living with hypoglycaemia unawareness.
[Show abstract][Hide abstract] ABSTRACT: Adapting behavior change interventions to meet the needs of racial and ethnic minority populations has the potential to enhance their effectiveness in the target populations. But because there is little guidance on how best to undertake these adaptations, work in this field has proceeded without any firm foundations. In this article, we present our Tool Kit of Adaptation Approaches as a framework for policymakers, practitioners, and researchers interested in delivering behavior change interventions to ethnically diverse, underserved populations in the United Kingdom.
We undertook a mixed-method program of research on interventions for smoking cessation, increasing physical activity, and promoting healthy eating that had been adapted to improve salience and acceptability for African-, Chinese-, and South Asian-origin minority populations. This program included a systematic review (reported using PRISMA criteria), qualitative interviews, and a realist synthesis of data.
We compiled a richly informative data set of 161 publications and twenty-six interviews detailing the adaptation of behavior change interventions and the contexts in which they were undertaken. On the basis of these data, we developed our Tool Kit of Adaptation Approaches, which contains (1) a forty-six-item Typology of Adaptation Approaches; (2) a Pathway to Adaptation, which shows how to use the Typology to create a generic behavior change intervention; and (3) RESET, a decision tool that provides practical guidance on which adaptations to use in different contexts.
Our Tool Kit of Adaptation Approaches provides the first evidence-derived suite of materials to support the development, design, implementation, and reporting of health behavior change interventions for minority groups. The Tool Kit now needs prospective, empirical evaluation in a range of intervention and population settings.
[Show abstract][Hide abstract] ABSTRACT: Type 2 diabetes is an established risk factor for the presence and progression of fatty liver. Little is known about the distributions and correlates of hepatic non-invasive biomarkers in community based populations with diabetes, unselected for liver disease.
We aimed to identify the distribution of, and metabolic risk factors associated with serum cytokeratin-18 (CK18) and the Enhanced Liver Fibrosis score (ELF), in a large, representative cohort of people with type 2 diabetes (the Edinburgh Type 2 Diabetes Study, ET2DS).
939 ET2DS participants, aged 60-74 years underwent physical examination including ultrasound for assessment of liver fat. Representative subgroups were assessed for markers of chronic liver disease (CK18 and ELF).
CK18 values ranged from 29-993 U/L (median 102, IQR 76-137 U/L) and ELF scores ranged from 6.9-11.6 (mean 8.9, SD 0.8). Statistically significant associations were found between both biomarkers and a number of metabolic risk factors. Neither CK18 nor ELF was consistently or strongly associated with established hepatic risk factors (alcohol excess, hepatotoxic medication use and positive immunology titres).
We identified the distribution of CK18 and ELF in a large cohort of older people with type 2 diabetes and showed that these markers are associated with an adverse metabolic risk factor profile, although much of the variation in biomarkers remained unexplained. Prospective studies are required to determine the extent to which CK18 and/or ELF predict the development of symptomatic liver disease and to identify additional risk factors which may influence the development of advanced liver disease in people with type 2 diabetes. This article is protected by copyright. All rights reserved.
Liver international: official journal of the International Association for the Study of the Liver 11/2013;
[Show abstract][Hide abstract] ABSTRACT: More than 1 billion people live in societies where consanguineous marriages are common. When children are born to consanguineous unions, there is an increased probability of the expression of single-gene disorders with a recessive mode of inheritance. There are presumptive social benefits of consanguineous marriages reported in the literature.
The UK's Born in Bradford birth cohort study recruited 12 453 women at 26-28 weeks' gestation between 2007 and 2010. In all, 11 396 completed a questionnaire, including questions about their relationship to their baby's father. We compared Pakistani and Other ethnic groups in consanguineous relationships and Pakistani, Other and White British groups not in consanguineous relationships, calculating percentages and age-adjusted prevalence ratios (95% confidence intervals).
In the Pakistani group, 59.3% of women (n = 3038) were blood relatives of their baby's father. Consanguinity was uncommon in the Other ethnic group (7.3%, n = 127) and rare (n = 5) in the White British group. Compared with non-consanguineous counterparts, mothers in consanguineous relationships were socially and economically disadvantaged (e.g. never employed, less likely to have higher education). The Pakistani consanguineous group's social, economic and health lifestyle circumstances were equivalent to, in some cases better than, women in non-consanguineous relationships (e.g. up-to-date in paying bills, or in disagreeing that they wished for more warmth in their marital relationship). The consanguineous relationship group had less separation/divorce. Rates of cigarette smoking during pregnancy were lower in mothers in consanguineous relationships.
Debate about consanguinity should balance the potential protective effect of consanguineous relationships with established genetic risk of congenital anomaly in children.
[Show abstract][Hide abstract] ABSTRACT: We aimed to explore stakeholder views, attitudes, needs, and expectations regarding likely benefits and risks resulting from increased structuring and coding of clinical information within electronic health records (EHRs).
Qualitative investigation in primary and secondary care and research settings throughout the UK. Data were derived from interviews, expert discussion groups, observations, and relevant documents. Participants (n=70) included patients, healthcare professionals, health service commissioners, policy makers, managers, administrators, systems developers, researchers, and academics.
Four main themes arose from our data: variations in documentation practice; patient care benefits; secondary uses of information; and informing and involving patients. We observed a lack of guidelines, co-ordination, and dissemination of best practice relating to the design and use of information structures. While we identified immediate benefits for direct care and secondary analysis, many healthcare professionals did not see the relevance of structured and/or coded data to clinical practice. The potential for structured information to increase patient understanding of their diagnosis and treatment contrasted with concerns regarding the appropriateness of coded information for patients.
The design and development of EHRs requires the capture of narrative information to reflect patient/clinician communication and computable data for administration and research purposes. Increased structuring and/or coding of EHRs therefore offers both benefits and risks. Documentation standards within clinical guidelines are likely to encourage comprehensive, accurate processing of data. As data structures may impact upon clinician/patient interactions, new models of documentation may be necessary if EHRs are to be read and authored by patients.
Journal of the American Medical Informatics Association 11/2013;
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