Abstract Aim and objective The aim of this study was to describe and explore parents' information and support needs when their child is diagnosed with type 1 diabetes, including their views about the timing and chronology of current support provision. Our objective was to identify ways in which parents could be better supported in the future. Design and participants Semi‐structured interviews were conducted with 54 parents of children with type 1 diabetes in four paediatric diabetes clinics in Scotland. Data were analysed using an inductive, thematic approach. Findings Parents described needing more reassurance after their child was diagnosed before being given complex information about diabetes management, so they would be better placed psychologically and emotionally to absorb this information. Parents also highlighted a need for more emotional and practical support from health professionals when they first began to implement diabetes regimens at home, tailored to their personal and domestic circumstances. However, some felt unable to ask for help or believed that health professionals were unable to offer empathetic support. Whilst some parents highlighted a need for support delivered by peer parents, others who had received peer support conveyed ambivalent views about the input and advice they had received. Conclusions Our findings suggest that professionals should consider the timing and chronology of support provision to ensure that parents' emotional and informational needs are addressed when their child is diagnosed and that practical advice and further emotional support are provided thereafter, which takes account of their day‐to‐day experiences of caring for their child.
The global pandemic caused by novel Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) has led to an unprecedented demand on critical care resources. The United Kingdom experienced its 'first wave' of Coronavirus-19 (Covid-19) disease in Spring 2020. Critical care units had to make major changes to their working practices in a short space of time and faced multiple challenges in doing so, including the challenge of caring for patients in multiple organ failure secondary to Covid-19 infection in the absence of an established evidence base of best practice. We undertook a qualitative investigation of the personal and professional challenges faced by critical care consultants in one Scottish health board in acquiring and evaluating information to guide clinical decision making during the first wave of the SARS-CoV-2 pandemic.Critical care consultants in NHS Lothian working in critical care from March to May 2020 were eligible to participate in the study. Participants were invited to take part in a one-to-one semi structured interview conducted using Microsoft Teams videoconferencing software. Reflexive thematic analysis was used as the method for data analysis using qualitative research methodology informed by a subtle realist position.Analysis of the interview data generated the following themes: The Knowledge Gap; Trust in Information; and Implications for Practice. Illustrative quotes are presented in the text and thematic tables.This study explored the experiences of critical care consultant physicians in acquiring and evaluating information to guide clinical decision making during the first wave of the SARS CoV2 pandemic. This study revealed that clinicians were profoundly affected by the pandemic and the ways in which it changed how they could access information to guide clinical decision making. The paucity of reliable information on SARS-CoV-2 posed a significant threat to the clinical confidence of participants. Two strategies were adopted to ease mounting pressures - an organised approach to data collection and the establishment of a local community of collaborative decision-making. These findings contribute to the wider literature by describing health care professionals' experiences in unprecedented times and could inform recommendations for future clinical practice. This could include governance around responsible information sharing in professional instant messaging groups, and medical journal guidelines on suspension of usual peer review and other quality assurance processes during pandemics.
Continuous subcutaneous insulin infusion delivered via a pump is increasingly recommended for younger children with Type 1 diabetes. Our aims were: to understand the impact on parents who care for young children using insulin pumps; to help interpret psychological outcomes reported in quantitative research; and to inform provision of support to future parents.We conducted in-depth interviews with 19 parents of children (aged ≤ 12 years) with Type 1 diabetes who used an insulin pump. Data were analysed thematically.Parents reported multiple benefits from using insulin pumps, including: no longer having to administer painful injections; fewer restrictions on the frequency, timing and carbohydrate contents of snacks and meals; and improvements in family life and their child's glycaemic control. Parents liked and felt less anxious about using bolus calculators to determine insulin doses; however, parents also described undertaking additional and unanticipated work to manage their child's diabetes using a pump. This included performing more blood glucose tests to calculate insulin doses for snacks and to address their concerns that the pump increased their child's risk of hypoglycaemia. Some parents reported doing additional blood glucose checks because they could adjust pump settings to better manage hypo- and hyperglycaemia.Parents liked and perceived benefits for their child and themselves from using an insulin pump; however, parents would benefit from being made aware of the additional work involved in using a pump and also from education and support to address concerns about hypoglycaemia. Better measures to evaluate parents' experiences are also recommended.
This article presents an analysis of the family context and everyday negotiations around risk, safety and danger between children and parents in four families drawn from a larger qualitative study. The challenges of analysing accounts from several family members are highlighted. Case study families are described; and fragments of their interwoven individual and shared biographies, on which respondents regularly drew to legitimate risk-related beliefs and practices, are outlined. The dynamic, fluid and contingent nature of risk construction and reconstruction in everyday family life is discussed and three main themes explored: establishing ‘the bottom line’; assumptions, collusions and contradictions around age, siblinghood and time; and contextualizing risk in the conduct of others. The authors conclude that, just as with childhood itself, it is important also to contextualize ‘risk’ within socioeconomic, cultural and institutional frameworks; and that, for most children, their families both constitute one such context and mediate wider social structures.
This article was migrated. The article was marked as recommended. BackgroundWe used a participatory action approach to explore the teaching of ethics and social science in medical schools in Chile. Here we report on themes and challenges that emerged from our discussions, and discuss commonalities and contrasts that may provide insight in the international context of medical education.MethodsWe held a one-day workshop, convened by the present authors from the University Diego Portales and the University of Edinburgh, with 24 participants representing seven Chilean universities,. A combination of small-group elicitation activities and short presentations was used to explore participants' thinking and experiences in relation to ethics and social science teaching in medical education.ResultsParticipants reported a range of issues encountered in teaching ethics and social science in the medical curriculum, many of which are common in the wider international context of medical education. Systemic factors related to the structure of health care and wider socio-economic issues were also seen as important in shaping the medical education landscape, with implications for the teaching of social science and ethics.ConclusionsThe workshop provided insights into the teaching of ethics and social and behavioural sciences in Chilean medical schools, and highlighted some key challenges. Thinking about how to address these may lead to useful strategies for improving this aspect of medical education more generally.
When children with type 1 diabetes approach adolescence, they are encouraged to become more involved in diabetes self-management. This study explored the challenges pre-adolescent children encounter when self-managing diabetes and the factors which motivate and enable them to take on new diabetes-related tasks. A key objective was to inform the support offered to pre-adolescent children. In-depth interviews using age-appropriate questioning with 24 children (aged 9–12 years) with type 1 diabetes. Data were analysed using an inductive, thematic approach. Children reported several barriers to taking on self-management tasks. As well as seeking respite from managing diabetes, children described relying on their parents to: perform the complex maths involved in working out carbohydrate content in food; calculate insulin doses if they did not use a bolus advisor; and administer injections or insert a cannula in hard-to-reach locations. Children described being motivated to take on diabetes tasks in order to: minimise the pain experienced when others administered injections; alleviate the burden on their parents; and participate independently in activities with their peers. Several also discussed being motivated to take on diabetes-management responsibilities when they started secondary school. Children described being enabled to take on new responsibilities by using strategies which limited the need to perform complex maths. These included using labels on food packaging to determine carbohydrate contents, or choosing foods with carbohydrate values they could remember. Many children discussed using bolus advisors with pre-programmed ratios and entering carbohydrate on food labels or values provided by their parents to calculate insulin doses. Several also described using mobile phones to seek advice about carbohydrate contents in food. Our findings highlight several barriers which deter children from taking on diabetes self-management tasks, motivators which encourage them to take on new responsibilities, and strategies and technologies which enable them to become more autonomous. To limit the need to perform complex maths, children may benefit from using bolus advisors provided they receive regular review from healthcare professionals to determine and adjust pre-programmed insulin-to-carbohydrate ratios. Education and support should be age-specific to reflect children's changing involvement in self-managing diabetes.
Abstract Background Equipoise and role conflict have been previously identified as important factors in professionals’ engagement with trials, inducing behaviours which can impact on recruitment. We explored these phenomena as potential explanations for the low levels of involvement of teenagers and young adults (TYA) with cancer in clinical trials in oncology. Methods We report findings from interviews with 30 purposively sampled direct-care professionals involved in delivering cancer care and/or facilitating clinical trials in Scotland. We undertook qualitative descriptive analysis, focussed on identifying key issues and themes. Results Interviewees largely identified as clinician–researchers and portrayed oncology as a specialty in which research was integral to care. They saw their primary responsibility as ensuring patients received the best treatment, but asserted that, in general, trials provided a vehicle for optimal care. Role conflict in its traditional form was rarely evident; however, other tensions were manifest. Professionals found the significant time costs of delivering trials difficult to reconcile with the increasing pressures on clinical services. They felt a responsibility to make prudent choices about the trials with which to engage. Guided by utilitarian principles, these choices were oriented towards benefiting the largest number of patients. This favoured trials in high volume diseases; as TYA tend to have rarer forms of cancer, professionals’ support for—and TYA’s access to—relevant trials was, by default, more limited. Conclusions Neither lack of individual equipoise nor experiences of traditional forms of role conflict accounted for the low levels of involvement of TYA with cancer in clinical trials. However, prominent tensions around the management of scarce resources provided an alternative explanation for TYA’s limited access to cancer trials. The prevailing approach to decision-making about whether and which trials to support was recognised as contributing to inequalities in access and care. Professionals’ choices, however, were made in the context of scarcity, and structured by incentives and sanctions understood by them as signalling governmental priorities. A franker discussion of the extent and distribution of the costs and benefits of trials work is needed, for change to be achieved.
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