Lesley Lowes

Cardiff University | CU · School of Nursing and Midwifery Studies

Objective To explore the delivery of home and hospital management at diagnosis of Type 1 diabetes in childhood and any impact this had on health professionals delivering care. Methods This qualitative study was undertaken as part of the DECIDE randomised controlled trial where participants were individually randomised to receive initiation of mana...

Objective To determine whether, in children with newly diagnosed type 1 diabetes who were not acutely unwell, management at home for initiation of insulin treatment and education of the child and family, would result in improved clinical and psychological outcomes at 2 years postdiagnosis. Design A multicentre randomised controlled trial (January...

Aims: The aim of this study was to explore from the perspectives of key stakeholders involved in the pathway to diagnosis, the barriers and facilitators to a timely diagnosis of type 1 diabetes in childhood. Methods: Qualitative interviews and free-text analyses were undertaken in 21 parents with a child diagnosed with type 1 diabetes, 60 parents w...

Aims: To design, develop, and evaluate the feasibility of delivering a multi-component community based intervention to parents and primary health care professionals to raise awareness of the symptoms of Type 1 diabetes (T1D) in childhood in 3 adjoining borough counties of South Wales. Materials and methods: Parent and primary health care advisor...

Purpose: The purpose of this study was to develop and test the feasibility of a parent-to-parent support intervention for parents whose child has recently been diagnosed with type 1 diabetes in the United Kingdom. Methods: The research team conducted a formative evaluation, working with parents to design an individual-level parent-to-parent supp...

Table S1. Summary of interviews.

AimsA diagnosis of Type 1 diabetes in childhood can be a difficult life event for children and families. For children who are not severely ill, initial home rather than hospital-based care at diagnosis is an option although there is little research on which is preferable. Practice varies widely, with long hospital stays in some countries and predom...

The purpose of this paper is to describe an interactive process for revising a parent social support intervention study with non-significant quantitative findings but strong clinical significance. We will present the methodological challenges that were problematic in the original intervention that potentially contributed to the non-significant find...

Type 1 diabetes (T1D) is a complex, invasive childhood condition. Optimal glycemic control, essential to minimize risk of life-changing complications, is difficult to achieve. The DEPICTED trial evaluated a training program in consultation skills for pediatric diabetes teams. Qualitative descriptive analysis of questionnaire free-text comments from...

Background: Type 1 diabetes occurs more frequently in younger children who are often pre-school age and enter the education system with diabetes-related support needs that evolve over time. It is important that children are supported to optimally manage their diet, exercise, blood glucose monitoring and insulin regime at school. Young people self-...

Background Renal transplant failure has a devastating impact on patients and their families. However, little research has been conducted in this area, which limits insight and understanding of the transplant failure experience that could subsequently inform clinical practice. Objectives To explore participants’ experiences of renal transplant fail...

Aim: To develop and evaluate an individually tailored age-appropriate diabetes diary and information pack for children and young people aged 6–18 years with type 1 diabetes to support decision-making and self-care with a specific focus on insulin management and blood glucose monitoring, compared with available resources in routine clinical practice...

Many funding bodies require researchers to actively involve service users in research to improve relevance, accountability and quality. Current guidance to researchers mainly discusses general principles. Formal guidance about how to involve service users operationally in the conduct of trials is lacking. We aimed to develop a standard operating pr...

To identify the continuity mechanisms central to a smooth transition from child to adult diabetes care, the service components through which these can be achieved and their inter-relations in different contexts. A realistic evaluation study of five models of transition in England comprising: organizational analysis (semi-structured interviews with...

To evaluate the effectiveness on glycaemic control of a training programme in consultation skills for paediatric diabetes teams. Pragmatic cluster randomised controlled trial. 26 UK secondary and tertiary care paediatric diabetes services. 79 healthcare practitioners (13 teams) trained in the intervention (359 young people with type 1 diabetes aged...

Overview of secondary outcomes

Diabet. Med. 29, 1506–1509 (2012) Aims To determine the proportion of cases of childhood Type 1 diabetes that present with ketoacidosis and any temporal trend. To assess the impact of a publicity campaign promoting earlier diagnosis. Methods We used an all-Wales register of incident cases with data on 2046 children from 1991 to 2009. The proportion...

Aim This paper focuses on stakeholders’ active involvement at key stages of the research as members of a Stakeholder Action Group (SAG), particularly in the context of lay stakeholder involvement. Some challenges that can arise and wider issues (e.g. empowerment, the impact of user involvement) are identified and explored within the literature on s...

To develop and evaluate a health-care communication training programme to help diabetes health-care professionals (HCPs) counsel their patients more skilfully, particularly in relation to behaviour change. The HCP training was assessed using a pragmatic, cluster randomised controlled trial. The primary and secondary analyses were intention-to-treat...

AIMs: To explore the experiences of young people and their carers during the transition from child to adult diabetes services. Longitudinal qualitative case studies of young people and carers undergoing transition in five different diabetes services in the UK. When young people make the transition from child to adult diabetes services, it is assume...

The aims of this study were to describe users' experience of paediatric diabetes services to inform development of an intervention to improve communication between staff and patients in secondary care within a wider study (the DEPICTED Study). Methods adapted for paediatric settings were used to set up six audio-recorded focus discussion groups wit...

There is increased incidence of new cases of type 1 diabetes in children younger than 15 years. The debate concerning where best to manage newly diagnosed children continues. Some units routinely admit children to hospital whilst others routinely manage children at home. A Cochrane review identified the need for a large well-designed randomised con...

Background: There is increased incidence of new cases of type 1 diabetes in children younger than 15 years. The debate concerning where best to manage newly diagnosed children continues. Some units routinely admit children to hospital whilst others routinely manage children at home. A Cochrane review identified the need for a large well-designed ra...

Background There is a lack of high quality, child-centred and effective health information to support development of self-care practices and expertise in children with acute and long-term conditions. In type 1 diabetes, clinical guidelines indicate that high-quality, child-centred information underpins achievement of optimal glycaemic control with...

Diabetes is the third most common chronic condition in childhood and poor glycaemic control leads to serious short-term and life-limiting long-term complications. In addition to optimal medical management, it is widely recognised that psychosocial and educational factors play a key role in improving outcomes for young people with diabetes. Recent s...

To explore participants' experiences of kidney transplant failure. Kidney transplants are effective and efficient but not without complications. About 7% to 12% of kidney transplants fail within a year, and rates of failure increase over time. Graft failure can have profound effects, often resulting in depression and, occasionally, suicidal feeling...

This paper reports on a study exploring parents' longer-term experiences of having a child with type 1 diabetes. Parents of children with type 1 diabetes may experience a grief reaction at diagnosis similar to that normally associated with bereavement, but little is known about their long-term emotional adaptation. Chronic sorrow, a sustained but i...

Purpose To explore participants' experiences of kidney transplant failure. Background Kidney transplants are effective and efficient but not without complications. About 7% to 12% of kidney transplants fail within a year, and rates of failure increase over time. Graft failure can have profound effects, often resulting in depression and, occasional...

Aim and objectives. The aim of this study was to examine insulin initiation practice across the UK in relation to children with newly diagnosed type 1 diabetes. Objectives of this study were to explore practices surrounding insulin initiation in children and nurses’ perceptions of associated decision-making. Background. There are comparative studie...

This paper is a report of a study to describe nurses' perceptions of decision-making and the evidence base for the initiation of insulin therapy. Several theoretical perspectives and professional's attributes underpin decision-making to commence insulin therapy. The management of type 2 diabetes is moving from secondary to primary care and this aff...

This article provides an overview of the challenges of managing type 1 diabetes in childhood and adolescence, from diagnosis through to transition from paediatric to adult services. Topics addressed include the impact of diagnosis, diabetes education, psychosocial issues and multidisciplinary working. Case studie are used to discuss some of the cha...

Background: Live transplantation presents many stressors for donors and recipients, yet a holistic understanding of the process, from both perspectives, is limited. Gift exchange is a theory governed by the principles of giving, receiving and reciprocating and has many similarities with the process of organ transplantation. It may therefore provid...

IntroductionAim of the chapterIntended learning outcomesTheories of grief, loss and changeInitial impactType 1 diabetesImpact on parentsImpact on the child/young person with chronic illnessContinuing careImpact on siblingsCoping, adaptation and changeTheories of stress and copingCoping strategiesNormalisationConclusion AcknowledgementUseful website...

Teenagers with diabetes have to cope with the demands of managing the condition within their social context at a time of rapid physical and psychosocial development. As teenagers actively seek independence from parents, they place greater importance on relationships with friends. Friends of teenagers with diabetes have an important supportive role...

The aim of this paper was to report the experience of in-depth interviewing about emotive topics from the perspectives of participants. We both undertook qualitative, longitudinal studies investigating emotive topics using repeated in-depth interviews as the data collection method. Recruitment and some of the interviews took place at a potentially...

Against the backdrop of involving children and families in their own care and the clear need to protect their interest, this article will consider care within child and adolescent mental health services (CAMHS). Following a brief overview of the incidence and prevalence of mental health problems, the development and organization of CAMHS will be ex...

There is no doubt that insulin therapy is effective in the management of people with diabetes. Indications for the use of insulin are agreed, but wide variations exist in the practice of starting people with diabetes on insulin. Current health care practices in the United Kingdom are increasingly being based on scientific evidence. This literature...

There is no doubt that insulin therapy is effective in the management of people with diabetes. Indications for the use of insulin are agreed, but wide variations exist in the practice of starting people with diabetes on insulin. Current health care practices in the United Kingdom are increasingly being based on scientific evidence. This literature...

This paper reports a study to gain a new theoretical understanding of parental grief responses and the process of adaptation to a diagnosis of childhood diabetes. A diagnosis of childhood (type 1) diabetes is an anxious and distressing event for the whole family. Little is known about the experience of parents of newly diagnosed children as they co...

Type 1 diabetes is one of the most common chronic childhood disorders, occurring with increasing frequency. Diabetes management involves the child and family learning how to inject insulin and monitor blood glucose, and adhere to a diet containing healthy food choices. Medical interventions necessary to stabilise newly diagnosed diabetes depend upo...

To explore parents' experience of having a child diagnosed with Type 1 diabetes, managed at home, and their first year following diagnosis. A qualitative, longitudinal study based on 40 in-depth interviews with parents of 20 children with newly diagnosed Type 1 diabetes managed at home from diagnosis in South Wales. Many parents were alarmed by the...

Cystic fibrosis (CF) and type 1 diabetes are two of the most common chronic childhood conditions in the UK; the management of each comprises demanding and perpetual daily regiments. As the life expectancy of patients with CF has improved, there has been a corresponding increase in the number of patients developing CF-related diabetes (CFRD), some o...

Reflection is now a prerequisite for all nurses, midwives and health visitors (UKCC, 2001). It is the method endorsed by the UKCC to promote the development of informed, knowledgeable and safe practice, and qualified practitioners are required to maintain a personal professional profile containing evidence of reflection on practice. The aim of this...

This paper challenges the idea of researcher objectivity as a necessary feature of phenomenological interviewing by contrasting the philosophies of Husserl and Heidegger in relation to the way they influence the interview process, the generation of data and the role of the researcher in the interview. The discussion demonstrates how a failure to di...

Chronic sorrow in parents of children with newly diagnosed diabetes: a review of the literature and discussion of the implications for nursing practice Childhood (type 1) diabetes is a chronic, life-long condition, the diagnosis of which may represent multiple losses for parents. Their emotional responses to the diagnosis have been likened to the g...

Historically, children with diabetes have been hospitalized at diagnosis, but increasingly, newly diagnosed children are being cared for entirely at home. The management of this chronic condition usually involves the whole family, with children often taking responsibility for much of their own care. However, this article focuses specifically on the...

Many physical, psychological, social and cognitive changes take place in adolescence. Emerging personal values and beliefs, an acute awareness of body image and a desire for peer conformity and increasing independence can make the transition to adulthood troublesome. For teenagers with diabetes, usual adolescent needs and concerns are complicated b...

This article forms part of an extensive literature review informing a study exploring the parental experience of home management of children with newly diagnosed diabetes. As a diagnosis of childhood diabetes may represent a major stressor event for parents, selected theories and models of stress and coping are discussed. These suggest that, influe...

Issues commonly associated with normal adolescent development can affect the management of insulin-dependent diabetes mellitus, and similarities between psychosocial issues relating to diabetes and eating disorders have been suggested. This article discusses the issues and the problematic coexistence of eating disorders and diabetes in adolescence....

Type 1 or insulin-dependent diabetes mellitus (IDDM) is one of the most common chronic childhood disorders, the incidence for children aged under 15 years in the British Isles almost doubling from 7.7/100 000 per year in 1973–74 to 13.5/100 000 per year in 1988 (Metcalfe and Baum, 1991). The lack of insulin production in IDDM results in high blood...

To define outcome measures for auditing the clinical care of children and adolescents with insulin dependent diabetes mellitus (IDDM) and to assess the benefit of appointing a dedicated paediatric trained diabetes specialist nurse (PDSN). Retrospective analysis of medical notes and hospital records. Glycaemic control, growth, weight gain, microvasc...

The specialist nurse caring for children with diabetes is widely recognized as a valued member of the paediatric diabetes team. However, there has been minimal exploration or examination of the clinical role of the paediatric diabetes specialist nurse (PDSN). This in-depth evaluation critically examines the impact of a PDSN post, comparing data fro...

Children's recognized vulnerability to the adverse effects of hospitalization has resulted in the firm belief that minimization or avoidance of hospitalization is in children's best interests. For children with newly diagnosed diabetes, minimal hospitalization may be achieved through the flexibility of the paediatric diabetes specialist nurse role,...

The topic of children's rights is a wide-ranging and complex subject, and in recognition of this fact this paper specifically addresses the concept of the right of children to make decisions about their own health-care. This paper explores the many factors which may influence a child's right to autonomy, including family relationships and the broad...

This paper briefly outlines the major ethical issues which need to be considered when conducting paediatric research. An overview of ethical theories and principles will highlight the difficulties which may be experienced when making decisions about children's competency to consent to participate in research. The congruency of the paediatric nurse...

Background and Aim: Improved survival in adolescents with cystic fibrosis has led to complications including cystic fibrosis related diabetes. Cystic fibrosis related diabetes is associated with declining respiratory status and weight, higher morbidity, and mortality. These changes may precede abnormalities in glycaemic control detected by the oral...