Parents' information and support needs when their child is diagnosed with type 1 diabetes:A qualitative study

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

Qualitative Description: A “How-To” Guide

This guide is based on multiple presentations we have given to doctoral students about the use of qualitative description (QD) and our own work using QD over the past 21 years. We were motivated to make this guide widely available due to the lack of adequate resources (manuscripts and textbooks) that cover QD. It is our hope that others will be open to this pragmatic approach, which is both creative and rigorous and can be useful for exploring phenomena from a qualitative perspective. Many published articles claim to use QD (e.g., approximately 3,600 in PubMed). However, guidelines for conducting a QD study are lacking. Kim et al. (2016) expressed a similar sentiment in their systematic review of studies that used QD. The lack of a rigorous systematic approach leads to inconsistencies in sampling procedures, inadequate sample sizes, and lack of theoretical or conceptual orientations to build knowledge. Research that uses QD is not intended to find underlying interpretive meanings or to describe the culture of a group; it is designed instead to describe the rich, truthful perspectives of those experiencing a specific and focused situation or phenomenon. The results of a QD study are expressed in common, easy-to-understand language. Therefore, it is especially useful when working with clinical populations, communities, and across different cultural groups. The QD approach provides rich description and makes an important contribution to knowledge development. We hope that this guide will become an essential reference for those interested in using this specific qualitative approach

Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies

AIM: To review the qualitative and quantitative evidence of the benefits of peer support for parents of children with disabling conditions in the context of health, well-being, impact on family, and economic and service implications. Method: We comprehensively searched multiple databases. Eligible studies evaluated parent-to-parent support and reported on the psychological health and experience of giving or receiving support. There were no limits on the child's condition, study design, language, date, or setting. We sought to aggregate quantitative data; findings of qualitative studies were combined using thematic analysis. Qualitative and quantitative data were brought together in a narrative synthesis. Results: Seventeen papers were included: nine qualitative studies, seven quantitative studies, and one mixed-methods evaluation. Four themes were identified from qualitative studies: (1) shared social identity, (2) learning from the experiences of others, (3) personal growth, and (4) supporting others. Some quantitative studies reported a positive effect of peer support on psychological health and other outcomes; however, this was not consistently confirmed. It was not possible to aggregate data across studies. No costing data were identified. Conclusion: Qualitative studies strongly suggest that parents perceive benefit from peer support programmes, an effect seen across different types of support and conditions. However, quantitative studies provide inconsistent evidence of positive effects. Further research should explore whether this dissonance is substantive or an artefact of how outcomes have been measured. © The Authors © 2013 Mac Keith Press

Are you a caregiver infographic

After our 2018 Nursing-Interprofessional Salon that focused on older adults\u27 wellness, we formed the Are You a Caregiver Initiative. We developed an infographic to help individuals self-identify as a caregiver and to link them with available caregiver support resources. We plan to disseminate this infographic within the UMassMemorial system as well as surrounding environs. The infographic can be adapted for use in other communities as well

Feasibility of parent-to-parent support in recently diagnosed childhood diabetes: the PLUS study

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

Effects of insulin pump vs. injection treatment on quality of life and impact of disease scores in children with type 1 diabetes mellitus in a randomised, prospective comparison

Objective: Effects of pump treatment vs. four times daily injections were explored in children with diabetes with regard to quality of life and impact of disease as well as adverse effects and parameters of metabolic control. Methods: An open, parallel, randomized controlled prospective comparative study lasting 14months was completed by 38 type 1 children with diabetes (age 4-16yr) following a 3.5-months run-in phase. Standardized quality-of-life Pediatric Quality of life Inventory (PedsQL) and impact of disease scores were obtained every 3.5months as well as regular medical parameters. Parallel treatment group data and longitudinal within-patient data were analysed for each treatment modality. Results: Within-patient comparisons of the two treatment modalities showed significant improvement in PedsQL and impact scores after pump treatment. Treatment group comparisons did not show significant improvement. Pump treatment resulted in decreased symptomatic hypoglycaemia and lowered haemoglobin A1c by 0.22% after run in. Conclusions: Within-patient comparison suggests that metabolic control, frequency of severe hypoglycaemia (a threefold decrease), quality of life and impact of disease scores are improved by pump treatment in comparison to regular treatment with four daily insulin injections. © 2008 The Authors Journal compilation © 2008 Blackwell Munksgaard

Concealed concern: Fathers' experience of having a child with Juvenile Idiopathic Arthritis

Despite increased research into families of chronically ill children, more needs to be known about the father’s experience. We address this issue through asking: ‘What is it like to be the father of a child with juvenile idiopathic arthritis?’ (JIA). Four members of eight families with an adolescent diagnosed with JIA, including seven fathers, were interviewed and transcripts analyzed using grounded theory. This study suggests that fathers of children with JIA experience several severe losses which are exacerbated through comparisons they make between their own situation and that of fathers of healthy children. In addition, the fathers faced several constraints which reduced their opportunities to communicate with their ill child through shared activities. Fathers appeared to conceal their distress by adopting strategies of denial and distraction however their adjustment was facilitated, to some extent, by social support. They could also develop greater acceptance of their situation over time as the care of their ill child became assimilated into family life and constraints upon their life gradually reduced through the increased maturity of their son or daughter with JIA. These findings have implications for healthcare professionals and voluntary organizations

Peer support for parents of disabled children part 1: perceived outcomes of a one-to-one service, a qualitative study

Background: Parents of disabled children are encouraged to seek peer support. Delivering one-to-one support requires resources; therefore, investigating how these services may impact on families and those providing the service is important when evaluating such services. Methods: We carried out a qualitative study involving semi-structured interviews and focus groups. Participants were 12 parents and 23 befrienders who had contact with the Face2Face one-to-one befriending service in Devon and Cornwall during a 12-month period, and 10 professionals from health, social care and education services. Findings: Shared experience was perceived central to successful peer support and was a catalyst for other elements of support, enabling parents to (i) learn from the experience of others; (ii) speak freely in a safe and non-judgemental environment; and (iii) receive support and encouragement from their befriender. These elements underpinned perceived outcomes for both parents providing and receiving support. Outcomes for parents receiving support centred on emotional stability, personal growth and reduced isolation. Supporting parents experienced positive outcomes through their training, mutual support and the feeling that they were helping others. Parents and befrienders appeared to benefit through expanding their social network. Nevertheless providing support was reported to create emotional burden and concerns for befrienders around their performance, and also required a substantial time commitment. Conclusions: Befrienders as well as parents perceived positive outcomes from their involvement in peer support although there is also potential for less positive impact on those offering support. © 2014 John Wiley & Sons Ltd

Pathways to diagnosis:A qualitative study of the experiences and emotional reactions of parents of children diagnosed with type 1 diabetes

OBJECTIVE: The aim of this study was to explore from parents' perspectives the circumstances and events which led to their child being diagnosed with type 1 diabetes (T1D). The objective was to understand reasons for delays in seeking treatment and parents' emotional reactions to diagnosis so others can be better informed and supported in future. METHODS: In-depth interviews with 54 parents of children (aged ≤12 yr) with T1D were conducted. Data analysis used an inductive, thematic approach. RESULTS: Parents described a 'prompt' and a 'delayed' pathway to their child being diagnosed. Parents who considered the diagnosis to be 'prompt' reported how they, or other people, had recognized their child had developed symptoms of T1D which resulted in a rapid presentation to health care professionals. In contrast, parents who perceived their child's diagnosis to be 'delayed' did not recognize signs of T1D and attributed their child's deteriorating health to other conditions, being out of routines and/or their stage of development. These parents often only sought medical help when symptoms became extreme. All parents were distressed by their child's diagnosis; however, parents in the 'delayed' pathway expressed unresolved feelings of guilt, particularly when their child was diagnosed with diabetic ketoacidosis. DISCUSSION: Parents' and other people's knowledge about T1D can affect the duration between onset of their child's symptoms and diagnosis. Campaigns to raise awareness should ensure that parents are made aware of symptoms and that T1D can develop during childhood. Health care professionals could discuss with parents the events preceding their child's diagnosis to better determine their emotional support nee

Qualitative description – the poor cousin of health research?

<p>Abstract</p> <p>Background</p> <p>The knowledge and use of qualitative description as a qualitative research approach in health services research is limited.</p> <p>The aim of this article is to discuss the potential benefits of a qualitative descriptive approach, to identify its strengths and weaknesses and to provide examples of use.</p> <p>Discussion</p> <p>Qualitative description is a useful qualitative method in much medical research if you keep the limitations of the approach in mind. It is especially relevant in mixed method research, in questionnaire development and in research projects aiming to gain firsthand knowledge of patients', relatives' or professionals' experiences with a particular topic. Another great advantage of the method is that it is suitable if time or resources are limited.</p> <p>Summary</p> <p>As a consequence of the growth in qualitative research in the health sciences, researchers sometimes feel obliged to designate their work as phenomenology, grounded theory, ethnography or a narrative study when in fact it is not. Qualitative description might be a useful alternative approach to consider.</p