- Imelda Coyne is a Professor in Children’s Nursing, and Director of the Trinity Research in Childhood Centre, Trinity ... moreImelda Coyne is a Professor in Children’s Nursing, and Director of the Trinity Research in Childhood Centre, Trinity College Dublin. She is a Fellow of Trinity College Dublin, Fellow of the American Academy of Nursing and a Fellow of the European Academy of Nursing Science. She is the Editor-in-Chief for the International Journal of Adolescent Medicine and Health (IJAHM). Her research focuses on children’s participation rights, child and family-centred care, shared decision-making, interventions for chronic illness management and transition for youth with chronic conditions. Her research on transition for adolescents and young people has led to the creation of a dedicated free eHealth resources (http://www.steppingup.ie/ ) to prepare youth for transition which has won awards for co-design and best hospital project. Current research projects are focused on testing the effectiveness of co-designed interventions to promote adolescents’ engagement in healthcare encounters and participation in shared decision-making.edit
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The United Nations Convention on the Rights of the Child (1989) clearly established the importance of children’s right to participate in matters that directly affect them. Children’s participation in healthcare decision-making is seen as... more
The United Nations Convention on the Rights of the Child (1989) clearly established the importance of children’s right to participate in matters that directly affect them. Children’s participation in healthcare decision-making is seen as leading to positive outcomes such as: increased internal locus of control; decreased fears and concerns, feeling valued, sense of competence, enhanced adaptation and satisfaction with healthcare. Paediatric organisations recommend that children participate in decision making commensurate with their development; children provide assent to care whenever reasonable; and health care providers do not exclude children from decision making without persuasive reasons.12 But how is this principle translated into practice and are there any difficulties with implementing this principle? This paper will consider the different philosophical positions on involving children in decision-making. This will provide the backdrop to a discussion of the difficulties with implementing this principle into practice drawing upon a systematic review of the research literature. This paper will suggest an approach to involving children that not only recognises children’s abilities and vulnerabilities and children’s rights, but at the same time, acknowledges and respects parental and professional responsibilities.
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For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre‐teens (9‐12 years) with type 1 diabetes and... more
For children with type 1 diabetes, the period of adolescence is associated with higher blood glucose levels and increased psychological distress compared to other age groups. Focusing on pre‐teens (9‐12 years) with type 1 diabetes and their families has been suggested as key to understanding and reducing these challenges. The aim of this study was to explore: 1, how diabetes affects family life, 2, experiences of and needs for support and 3, how care responsibilities are negotiated among pre‐teens with type 1 diabetes and their families. Data were obtained from four interactive workshops with pre‐teens (n = 17), their parents (n = 26) and their siblings (n = 14). Dialogue tools, for example quotes and picture cards, were used to facilitate discussion and reflection concerning family life with type 1 diabetes. Data analysis resulted in three themes: 1, diabetes takes up ‘a lot of space’, 2, giving and receiving support and 3, balancing control and flexibility. While diabetes took up significant space in the families, family members protected each other from their respective frustrations. The findings point to the significance of considering all key family members and their interactions in diabetes interventions. This includes balancing control and flexibility, negotiating responsibilities and building trust.
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Restraint is often perceived as necessary to ensure that medical procedures are carried out safely. The limited research into nurses' perceptions of restraint practices with hospitalized children hinders... more
Restraint is often perceived as necessary to ensure that medical procedures are carried out safely. The limited research into nurses' perceptions of restraint practices with hospitalized children hinders understanding the extent of the problem. A survey design was used to investigate nurses' perceptions of restraint use from five units in one children's hospital in Ireland. Findings revealed that restraint is a common practice, with physical and psycho- logical restraints most commonly used and newborn to 4-year-old children most likely to be restrained. Restraint was most often used for cannulation and latterly for administering medication and preventing interference to intravenous lines. To promote the use of thera- peutic holding for the safe delivery of procedures, nurses require education and skills training. Restraint should only be used as a last resort and in all situations, nurses should assess the need to use restraint and explore any alternatives in order to gain the child's cooperation. More research is needed into the situational variables that can lead to restraint usage in order to identify learning needs and promote the use of alternative interventions.
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In this chapter we look at the past to illustrate the impetus for participatory research, the present to illustrate the diverse range of participatory research techniques and the future to illustrate the challenges, the gaps and what we... more
In this chapter we look at the past to illustrate the impetus for participatory research, the present to illustrate the diverse range of participatory research techniques and the future to illustrate the challenges, the gaps and what we need to do to ensure that research is truly participatory and not another form of tokenism. Over the past decade, the participation agenda and growth of legislation have led to increasing focus on user (including children) involvement in research, policy and the delivery of services. This has focused attention on how to support, elicit and value children’s and young people’s voices in all matters that concern them, including research. Participatory research is particularly suitable as it incorporates a strength-based approach that acknowledges children’s and young people’s agency and capabilities. It is about seeing children and young people as experts in their own lives and using an approach and techniques that promote active engagement, co-construction of meanings and understandings in all stages of the research process. There is a growing body of participatory research techniques that facilitate and maximise children’s and young people’s diverse ways of communicating and participating. We note how researchers continue to push boundaries and challenge assumptions, but more needs to be done to promote choice, enhance agency and encompass the diversity of children and childhood. We conclude that researchers need to be critical and self-reflective on the processes that produce children’s and young people’s voices, the power imbalances and the ideological context that shape them and which influence representation.
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The aim of this chapter is to discuss the core principles in children’s nursing and the application of these principles in everyday practice for nurses working with children and families. These essential principles are fundamental in the... more
The aim of this chapter is to discuss the core principles in children’s nursing and the application of these principles in everyday practice for nurses working with children and families. These essential principles are fundamental in the delivery of high quality care and as such will be evident throughout this textbook. This chapter will explain these principles in the context of community and hospital care and illustrate how nurses can use this knowledge in their clinical practice. There is no doubt that clinical skills are an essential component of high quality healthcare, but they are on their own insufficient to ensure that the needs of children and their families are met. Clinical skills need to be embedded in children’s services that are child centred and clearly focused around the needs of children and their families; but how is this possible? To ensure high quality care for children in hospital and the community you need to incorporate the core principles of family centred care into your everyday nursing practice and interventions. It is essential to understand the principles of family centred care and the importance of partnership and negotiation in the delivery of clinical skills. Knowing where to begin can be difficult, but we think that you can start with the concept of attachment and loss. Understanding this in relation to children’s separation from their family and home will help you to understand the impact of hospitalization on children, particularly those younger than five years old. The adverse aspects of hospitalization have been a substantial driving force in delivering more nursing services to children at home. However, it is also important to remain aware of the ongoing impact of lifelong illness on children and their families and why it is essential to use effective communication skills, maintain safe environments, and incorporate play into your practice. Together with evidence-based clinical skills, these facets of practice will enable you to maintain and promote children’s and families’ health and well-being. Specific learning outcomes are as follows. At the end of this chapter you will: ● Understand the basic elements of attachment and loss theory.
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Respecting children’s rights to be heard in matters that directly affect their everyday lives has become an established principle in Ireland and internationally. Accessing children’s voices raises a number of important issues for... more
Respecting children’s rights to be heard in matters that directly affect their everyday lives has become an established principle in Ireland and internationally. Accessing children’s voices raises a number of important issues for researchers across a wide range of disciplines. This article reflects on the organizational, practical and ethical challenges that arose from a study that investigated hospitalized children’s experiences of consultation and decision-making. The data collection process was hampered by practical and organizational factors, which consequently led to carrying out more individual interviews than focus groups as planned. Some obstacles associated with the hospital environment were practical issues that could be resolved, in contrast to ethical issues such as consent, privacy, access and the role of gatekeepers. The function of gatekeepers generally and in the healthcare setting in relation to accessing children needs to be debated and challenged because children may be silenced and excluded from the opportunity to have their voices heard.
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Research Interests: Pediatrics, Health Care, Participation, Qualitative Research, Juvenile Idiopathic Arthritis, and 14 moreAdolescent, Medicine, Child, Qualitative, Young Adults, Health Professionals, Feeling, Clinical Sciences, Distancing, Juvenile, Parent, Pediatric Rheumatology, Paediatrics and reproductive medicine, and pediatrik
Children report that they do not participate in their healthcare as much as they want, despite having the lawful right to form their own views and the right to express those views freely in all mat ...
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BACKGROUND Research on long-term health conditions indicates that adolescents are not actively involved during their medical visits. Active involvement is essential because this can help adolescents learn how to self-manage their... more
BACKGROUND Research on long-term health conditions indicates that adolescents are not actively involved during their medical visits. Active involvement is essential because this can help adolescents learn how to self-manage their treatment plan. OBJECTIVE To co-design a video intervention to improve youth question-asking and provider education during paediatric diabetes visits. PATIENT INVOLVEMENT A participatory-led approach was used to co-design the video, through a combination of interviews/ focus groups and the establishment of a Youth Advisory Group. METHODS First, focus groups and one-to-one interviews were held with adolescents, parents and healthcare providers. Second, two workshops were held with the Youth Advisory Group, Parent Advisory Group and stakeholders on script design. Finally, an iterative development of the video took place between the research team, videographer, both advisory groups and the steering committee. There were three rounds of feedback before the video was finalised. RESULTS Adolescents' content preferences included: 1) message of empowerment; 2) managing your diabetes so you can get on with the fun stuff in life; 3) Promoting independence; 4) Reasons for not speaking at clinic visits and reassurance; 5) Becoming comfortable to speak and ask questions at clinic visits; 6) Practical advice on how to ask questions. Formatting preferences included that the video should be short, divided into segments, with adolescents with diabetes acting in it, and speaking directly to the camera. DISCUSSION Identifying and reflecting adolescents' needs and preferences for engagement with healthcare providers was critical in the development process. Adolescents' participation in the co-design process was pivotal to the acceptability of the intervention for adolescents with diabetes. PRACTICAL VALUE The intervention may increase adolescents' participation in communication and interactions with healthcare providers, which may help them to be more active in the self-management of their condition.
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Research Interests: Psychology and Medicine
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IntroductionChronic pain is a common health problem that can have a significant impact on children and young people's daily life. Although research on pediatric chronic pain has been a priority globally, little is known about young... more
IntroductionChronic pain is a common health problem that can have a significant impact on children and young people's daily life. Although research on pediatric chronic pain has been a priority globally, little is known about young people's experience of chronic pain in Saudi Arabia. Thus, this article reports on young people's experience of chronic pain and the impact on their lives in Saudi Arabia which forms part of a larger study.MethodsMultiple case study design following Yin's (2018) approach was used. Purposeful and theoretical sampling were used to recruit young people aged 12 to 18 who had experienced chronic pain for at least three months, their parents, and their school personnel. The young people and their parents were recruited from a tertiary hospital located on the western side of Saudi Arabia while school personnel were recruited from the schools that young people attended. Data were collected through in-depth semi-structured face-to-face (n = 15) and...
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AimTo explore the International Network for Child and Family Centred Care (INCFCC) members' experiences and views on the long‐term impact of COVID‐19 on the nursing workforce.BackgroundOn the 11 March 2020, the World Health... more
AimTo explore the International Network for Child and Family Centred Care (INCFCC) members' experiences and views on the long‐term impact of COVID‐19 on the nursing workforce.BackgroundOn the 11 March 2020, the World Health Organization declared COVID‐19 a global pandemic. While some countries adopted a herd immunity approach, others imposed stricter measures to reduce the transmission of the virus. Hospitals in some countries faced an avalanche of extremely sick admissions, whereas others experienced an early surge in cases or were able to control the spread.DesignDiscursive paper.MethodsA web‐based survey was e‐mailed to 63 INCFCC members from 28 March to 30 April 2022, as an invitation to share their experience concerning the long‐term impact of COVID‐19 on their role as a nurse educator, clinician or researcher.ResultsSixteen members responded, and the responses were grouped under the themes stress and anxiety, safe staffing and pay, doing things differently, impact on resea...
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AimsTo critically synthesize empirical studies on the impact of chronic pain on adolescents' school functioning and school personnel responses to managing pain in schools.DesignMixed method systematic review.Data sourcesMedline,... more
AimsTo critically synthesize empirical studies on the impact of chronic pain on adolescents' school functioning and school personnel responses to managing pain in schools.DesignMixed method systematic review.Data sourcesMedline, CINAHL, PsycINFO, ERIC, ScienLO, Cochrane Library, and EMBASE were searched for published articles from inception to December 2018.Review methodsFourteen studies met the inclusion criteria. Data from the qualitative and quantitative studies were synthesized using parallel‐results convergent integrated design. The Critical Appraisal Skills Programme and Mixed Methods Appraisal Tool version 2018 were used for assessing the quality of included studies.ResultsChronic pain appears to have a significant negative influence on adolescents' school attendance, academic performance/achievement, academic competence, physical activities, and social functioning. However, other studies indicated that adolescents with chronic pain had better academic performance and...
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Abstract Problem Identification This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses emotional,... more
Abstract Problem Identification This systematic review will examine the social support needs of bereaved parents in the specific context of pediatric cancer by synthesizing the qualitative evidence. Social support encompasses emotional, practical, informational, and meaning-making support needs. Literature Search The Joanna Briggs Institute procedures for conducting qualitative systematic reviews guided every stage of this review. Four databases (PsychInfo, CINAHL, Pubmed, and ASSIA) were systematically searched, in addition to the gray literature and scoping review. Through a five-step critical appraisal process 11 out of 668 potential articles were identified as meeting the inclusion criteria. Data Evaluation/Synthesis Relevant findings were synthesized with a thematic-synthesis approach. Findings, which follow the journey of bereaved parents integrated under the core-category “Needs.” This encompasses of four higher-level categories: Last days: Parent needs when caring for their dying child Rest in peace: Parent needs during the child’s death Feeling abandoned: Parent needs for contact after the child’s death Searching for Meaning: Parents needs when making sense of loss Conclusion Informational support needs is largely unexplored in academic literature. Staff in the treating-hospital are central in offering bereavement-support to parents, who may otherwise feel that they have lost their second home (hospital) and second family (staff).
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Europe is in the midst of a large-scale migration crisis, which has implications for healthcare provision for asylum-seeking children and families. The authors set out to identify the psychological status of asylum-seeking children and... more
Europe is in the midst of a large-scale migration crisis, which has implications for healthcare provision for asylum-seeking children and families. The authors set out to identify the psychological status of asylum-seeking children and highlight their needs. A search of three electronic databases was carried out, resulting in 15 studies. Data show that asylum-seeking children appear to experience many mental health difficulties, including post-traumatic stress disorder, depression, self-harm, sleep disturbance and behavioural difficulties. The daily living situation includes a range of psychological stressors, such as lack of space and control; fear of deportation; feelings of inadequacy and hopelessness; poor parental mental health; lack of recreational facilities; communication issues; and financial worries. Since many asylum-seeking children have experienced past trauma, hospitalisation and healthcare encounters may trigger traumatic memories and cause further distress. Awareness...