Facilitating transition from children's to adult services for young adults with life-limiting conditions (TASYL): Programme theory developed from a mixed methods realist evaluation.

BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, necessitating a transition from children's to adult services. Given the lack of evidence on interventions to promote transition, it is important that those creating and evaluating interventions develop a theoretical understanding of how such complex interventions may work. OBJECTIVES: To develop theory about the interventions, and organisational and human factors that help or hinder a successful transition from children's to adult services, drawing on the experience, knowledge, and insights of young adults with life-limiting conditions, their parents/carers, and service providers. DESIGN: A realist evaluation using mixed methods with four phases of data collection in the island of Ireland. Phase one: a questionnaire survey of statutory and non-statutory organisations providing health, social and educational services to young adults making the transition from children's to adult services in Northern Ireland and one Health Services Executive area in the Republic of Ireland. Phase two: interviews with eight young adults. Phase three: two focus groups with a total of ten parents/carers. Phase four: interviews with 17 service providers. Data were analysed seeking to explain the impact of services and interventions, and to identify organisational and human factors thought to influence the quality, safety and continuity of care. RESULTS: Eight interventions were identified as facilitating transition from children's to adult services. The inter-relationships between these interventions supported two complementary models for successful transition. One focused on fostering a sense of confidence among adult service providers to manage the complex care of the young adult, and empowering providers to make the necessary preparations in terms of facilities and staff training. The other focused on the young adults, with service providers collaborating to develop an autonomous young adult, whilst actively involving parents/carers. These models interact in that a knowledgeable, confident young adult who is growing in decision-making abilities is best placed to take advantage of services - but only if those services are properly resourced and run by staff with appropriate skills. No single intervention or stakeholder group can guarantee a successful transition. Rather, service providers could work with young adults and their parents/carers to consider desired outcomes, and the range of interventions, in light of the organisational and human resources available in their context. This would allow them to supplement the organisational context where necessary and select interventions that are more likely to deliver outcomes in that context.

Transition from children's to adult services for young adults with life-limiting conditions: A realist review of the literature.

BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from children's to adult services. This has proved a challenging process for both young adults and service providers, with complex transition interventions interacting in unpredictable ways with local contexts. OBJECTIVES: To explain how intervention processes interact with contextual factors to help transition from children's to adult services for young adults with life-limiting conditions. DESIGN: Systematic realist review of the literature. DATA SOURCES: Literature was sourced from four electronic databases: Embase, MEDLINE, Science Direct and Cochrane Library from January 1995 to April 2016. This was supplemented with a search in Google Scholar and articles sourced from reference lists of included papers. REVIEW METHODS: Data were extracted using an adapted standardised data extraction tool which included identifying information related to interventions, mechanisms, contextual influences and outcomes. Two reviewers assessed the relevance of papers based on the inclusion criteria. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tools. RESULTS: 78 articles were included in the review. Six interventions were identified related to an effective transition to adult services. Contextual factors include the need for children's service providers to collaborate with adult service providers to prepare an environment with knowledgeable staff and adequate resources. Mechanisms triggered by the interventions include a sense of empowerment and agency amongst all stakeholders. CONCLUSIONS: Early planning, collaboration between children's and adult service providers, and a focus on increasing the young adults' confidence in decision-making and engaging with adult services, are vital to a successful transition. Interventions should be tailored to their context and focused not only on organisational procedures but on equipping young adults, parents/carers and staff to engage with each other effectively.

Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents' Web Information Needs.

BACKGROUND: Parents of children with rare conditions increasingly use the Internet to source information on their child's condition. This study reports on part of a larger study whose overall aim was to identify the Internet use by parents when seeking information on their child's rare condition, with the specific purpose of using the findings to aid in the development of a website specifically designed to meet the parents' needs. It presents findings on why these parents use the Internet, the information and support content they source, and the impact these resources have on their capacity to care for and manage their child's condition. OBJECTIVE: To (1) ascertain parents' general Internet usage patterns, (2) identify the nature of the information parents most frequently searched for, and (3) determine the effect the Internet-sourced information had on parents of children with rare conditions. METHODS: Data collection was conducted in 2 parts: Part 1 was a focus group interview (n=8) to inform the development of the questionnaire, and Part 2 was a questionnaire (Web- and paper-based). All respondents (N=128) completed the questionnaire using the Internet. RESULTS: Parents frequently and habitually used the Internet and social media to gather information on their child's condition. These Web-based resources provide parents with a parent-to-parent support platform that allows them to share their experiences and information with other parents, which, the respondents considered, improved their knowledge and understanding of their child's condition. The respondents also reported that these resources positively impacted on their decision making, care, and management of their child's condition. However, they reported receiving mixed responses when wishing to engage and share with health care professionals their Internet and social media interactions and information outcomes. CONCLUSIONS: This study adds to the emerging body of research on the Internet use by parents of children with rare conditions to source information on their child's condition. The evolving and ever increasing parent-to-parent support systems via social media are impacting on parents' capacity to manage their children. Implications for practice include health care professionals' response to this knowledge and capacity shift, and the significance of these changes when interacting with parents. The key message of this study was that parents of children with rare conditions are habitual users of the Internet to source information about their children's conditions. Social media, especially Facebook, has an increasing role in the lives of these parents for information and support. Parents' interest in information gathering and sharing includes a desire for shared dialogue with health care professionals.

Fundamentals of estimating sample size.

BACKGROUND: Estimating sample size is an integral requirement in the planning stages of quantitative studies. However, although abundant literature is available that describes techniques for calculating sample size, many are in-depth and have varying degrees of complexity. AIM: To provide an overview of four basic parameters that underpin the determination of sample size and to explain sample-size estimation for three study designs common in nursing research. DISCUSSION: Researchers can estimate basic sample size if they have a comprehension of four parameters, such as significance level, power, effect size, and standard deviation (for continuous data) or event rate (for dichotomous data). In this paper, these parameters are applied to determine sample size for the following well-established study designs: a comparison of two independent means, the paired mean study design and a comparison of two proportions. CONCLUSION: An informed choice of parameter values to input into estimates of sample size enables the researcher to derive the minimum sample size required with sufficient power to detect a meaningful effect. An understanding of the parameters provides the foundation from which to generalise to more complex size estimates. It also enables more informed entry of required parameters into sample size software. IMPLICATIONS FOR PRACTICE: Underpinning the concept of evidence-based practice in nursing and midwifery is the application of findings that are statistically sound. Researchers with a good understanding of parameters, such as significance level, power, effect size, standard deviation and event rate, are enabled to calculate an informed sample size estimation and to report more clearly the rationale for applying any particular parameter value in sample size determination.

An evaluation of an interprofessional master's level programme in children's palliative care: The students' evaluation.

In 2010/12 an innovative children's palliative care interprofessional educational project funded by the Irish Hospice Foundation was undertaken in a University faculty (Trinity College Dublin). This initiative responded to international educational recommendations to meet the palliative care needs of children. The project involved the development and delivery of 3 standalone modules at Master's level and a substantive research evaluation of the project to examine stakeholders and students perspectives to provide an insight into their experiences and to gather data for future developments. The research evaluation was conducted in two parts, part one sought students' evaluation and part two sought stakeholders', curriculum developers and lecturers' feedback. This paper reports the students' evaluation. Findings indicate that students perceived undertaking the modules provided them with the opportunity for improved interprofessional learning and they found modular content and assessment challenging. They also found the modules met their educational needs and also promoted an awareness of interprofessional education and the collaborative teamwork involved in children's palliative care. These students already experienced in children's palliative care indicated that those teaching on programmes at this level need expertise and programme time needs to be available for sharing experiences and for consolidation of learning.

'Going between worlds': Travelling with children with complex needs.

In this ethically approved hermeneutic phenomenological study conducted in Ireland, mothers' experiences in caring for children with complex needs were explored. The sample comprised mothers (n = 17) at home caring for children with complex needs. Data were analysed from multiple interviews (n = 48) and diary records (n = 11). Care is provided in a going between world of travel. Providing care when travelling is challenging, and all journeys require careful preparation and pre-emptive care. Few unnecessary journeys are undertaken. Unnecessary travelling could be avoided by careful and coordinated service planning.

Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition.

BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in Ireland use following the death of their child. OBJECTIVE: The aim of this study was to explore mothers' experiences of bereavement support in Ireland following the death of their child from a life-limiting condition. METHOD: A descriptive qualitative design was used. The study sample was ten mothers who had been bereaved in the previous 5 years. All mothers were recruited to the study by a gatekeeper from a voluntary organisation. Data were obtained through unstructured single interviews and analysed using conventional content analysis. RESULTS: The findings indicate that the mothers relied on a combination of informal and formal bereavement support. In addition to depending on others to provide support, the mothers described their ability to self-support. CONCLUSIONS: The findings show that mothers in Ireland use a variety of sources of support following the death of their child from a life-limiting condition. Health professionals involved in caring for families and children with a life-limiting condition should have an understanding of these sources.

Awareness and minimisation of systematic bias in research.

A major goal of nursing and midwifery is the delivery of evidence-based practice. Consequently, it is essential for the quality and safety of patient/client care that policy makers, educators and practitioners are aware of the presence of potential systematic bias in research practice and research publications so that only sound evidence translates into practice. The main aim of this paper is to highlight the need for ongoing awareness of the potential presence of systematic bias in research practice, to explore commonly reported types of systematic bias and to report some methods that can be applied to minimise systematic bias in research.

Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters.

PURPOSE: The purpose of this project was to gather parents' expertise to inform an educational leaflet for parents to share with professionals caring for children with 22q11.2 deletion syndrome (22q11.2 DS). DESIGN AND METHODS: A mixed-method design was adopted. Data were collected by one focus group interview (n = 8) and questionnaires with 92 other parents of children with 22q11.2 DS. RESULTS: Quantitative and qualitative responses informed the development of an information leaflet. PRACTICE IMPLICATIONS: Parents are well positioned to assist in development of information leaflets that can minimize "repeated storytelling" during professional encounters.

Neuropathic pain management in children.

There are difficulties in assessing, managing, and evaluating neuropathic pain in dying children, particularly those with neurological impairment. Neuropathic pain in children often presents differently to how it presents in the adult population. Comprehensive assessment as well as pharmacological and non-pharmacological interventions are crucial to its successful management and frequently require input from an interdisciplinary team. Notwithstanding the need for further research, this paper brings together research papers, reviews, and clinical guidelines to present an exploration of existing evidence regarding care for children with neuropathic pain and their families.

Explicating caregiving by mothers of children with complex needs in ireland: a phenomenological study.

This qualitative phenomenological study explored mothers' experiences of caring for a child with complex needs. After ethical approval was obtained, data were collected through 11 diaries and 48 interviews with 17 mothers in Ireland. Caring for a child with complex needs involves the delivery of care in an inside world of the home, the world outside the home, and a "going-between" world. Caregiving, 1 of 8 closely linked dimensions, is presented, including its 4 categories. These are normal mothering, technical caregiving, preemptive caregiving, and individualized caregiving. Professionals require a greater understanding of the experiences of mothers caring for children with complex needs at home.

What are pre-registration nurses taught about caring for children?

Nurse education curricula have to be continually reviewed to ensure that content remains applicable to contemporary healthcare developments. In this article, the authors report the findings of a research study that investigated the children's nursing component taught in all non-children's BSc Nursing degree programmes in Irish colleges. The aim of the study was to identify how European Union directives and national curriculum guidelines are interpreted in colleges, and to clarify the preparation that non-children's pre-registration nursing students receive with respect to caring for children. The authors explored aspects related to children's nursing in all non-children's undergraduate pre-registration programmes, including curriculum content and its delivery, assessments and practice experiences. Data were collected by a specifically designed questionnaire based on the Requirements and Standards for Nurse Education Programmes (An Bord Altranais, 2005a; b). A university ethics committee provided ethical approval. The response rate was 54% (n=7), and data were analysed using SPSS 16 and content analysis. The authors' findings illustrated that the requirements and standards of all nursing programmes are interpreted in a variety of ways regarding children's nursing. Nationally, nursing content related to children needs to be reviewed in all nursing programmes to ensure consistency among providers. Healthcare requirements for children and families need to be heightened within curricula for all disciplines.

The experiences of providing children's palliative care education in undergraduate nursing programmes--a discussion of some practical issues.

Despite recent proliferation of palliative care services for children, and the fact that the needs of these children and their families are enshrined in current policy directives, the challenges of providing education for nurses within this area of practice is largely underexplored. This paper examines some of the key issues facing nurse educators who are involved in the delivery of palliative care content in undergraduate children's nursing programmes. Drawing on the extensive experiences of two nurse educators in children's palliative care education, research and practice, key issues which should be considered by those involved in curriculum development and delivery will be outlined. Such issues include ambiguity in terminology and resultant lack of conceptual clarity, the limited evidence base to underpin practice and education, the complexities of teaching sensitive topics to large groups and limited teaching expertise to deliver the content. Suggestions for addressing such issues will be outlined.

Diaries as a method of data collection in research.

Diary records in healthcare research are becoming more common. This article describes the use of a diary as a method in which mothers' experiences of caring for children were explored in a hermeneutic phenomenological study or similar. Data for the original study were collected using three interviews and a diary recorded on three separate occasions. The challenges and issues that can arise when using diaries are discussed here.

Impact of childhood chronic illnesses on siblings: a literature review.

BACKGROUND: Childhood illness can have a significant impact on families, particularly on the ill child's siblings. There is a dearth of published literature focusing on the needs of siblings of ill children. AIM: This literature review aims to provide an overview of the current healthcare literature in relation to the impact of childhood chronic illness or disability on siblings. METHOD: A literature review was undertaken by searching the databases CINAHL, PsycINFO, ProQuest and Cochrane Library for relevant articles in English using the search terms: 'siblings', 'chronic illness', 'disability', 'cancer', 'sibling relations', 'sibling adjustment', 'coping', 'family-centred care', 'sibling interventions', 'camps', 'autism', 'Down's syndrome'. Seventeen research studies in total were reviewed. RESULTS: This review focuses on three sibling groups related to children suffering from autism, cancer and Down's syndrome, and are discussed under the following headings: sibling adjustment; family functioning and sibling's coping resources; and intervention programmes. CONCLUSION: The literature revealed that siblings of children with Down's syndrome were well adjusted to living with their brother or sister. However, there was conflicting information on the adjustment of siblings of children with cancer and autism. An awareness of the harmful effect that living with childhood illness and disability can have on some siblings is essential to enable healthcare professionals to provide supportive interventions to protect siblings' physical and emotional wellbeing.

The multifaceted influence of gender in career progress in nursing.

The complex web of gender influence in the workplace results from a multifaceted interplay of factors [Walby et al. (1994) Medicine and Nursing. Sage Publications, London]. Literature reports that in nursing men's success compared with that of women is disproportionate and substantial evidence of gender-based disadvantage is found [Women in Management Review13 (1998) 184]. However, studies have not addressed the specific reasons for this and little is known of how or what influences nurses' career decisions and developments [Journal of Advanced Nursing25 (1997) 602]. Those studies which examine career developments and patterns are mainly found in the private business sector.

Questioning: a tool in the nurse educator's kit.

Effective questioning is one of the most important teaching techniques and plays a crucial role in creating an effective learning environment. Yet, in nurse education little has been written about this technique or its importance. Most literature refers to the need for lecturers to be skilled in questioning, but less is written about how to develop this essential technique. Being skilled in questioning is an important fundamental step towards becoming an effective lecturer. Developing the skills necessary to help students draw on and apply acquired knowledge in new, unique situations requires the skilled use of questioning. Most experienced lecturers use both written and verbal questioning, but evidence suggests that the majority of their questioning is posed at lower cognitive levels of description. Quality teaching requires students to be engaged with the content of learning tasks designed to reach understanding. Using questioning appropriately facilitates the learning process by requiring the student to participate in the process and to achieve higher comprehension skills by acquiring deep, elaborate understanding of the subject. To acquire and develop this skill, the lecturer is required to understand questioning, to select the tool appropriately and to use questions that are varied, planned, appropriate and humanely posed. The functions of questioning, types of questions and the key skills required for the effective use of this teaching strategy are outlined in this article.

The impact of ongoing continuing professional development for nurses in the Republic of Ireland.

AIM: The aim of this study was to explore and describe the stressors experienced by a group of 70 students who were undertaking a part-time degree in an Irish University. BACKGROUND: Within the literature on stress, part-time nursing students, who are undertaking continuing education programmes, appear to have received little attention. Stress amongst nurses is evident within the nursing literature but little information is available on the specific stressors that affect Registered Nurses who attend further academic study. Furthermore, there is little attention given to comparisons across faculty or between different institutions. METHOD: The authors used quantitative methods to gather a large amount of data on the topic. Data were collected using questionnaires distributed to two groups of students in a classroom setting. RESULTS: The top ranking stressor was 'preparing an assignment for submission'. Nursing students were predominantly exposed to stressors associated with assignment completion/submission and balancing work and family commitments. Differences emerged between the groups with regard to the intensity of perceived stressors in relation to academic portions of the programme and also finance. Nine major factors emerged from factor analysis that may form the basis for future studies in this area. Areas related to lectures, relationships with lecturers and the course process were not identified as stressors. CONCLUSION: The results of this study identified common student stressors across two universities, and confirmed the findings of an initial small exploratory study. The intensity of perceived stress is such that both educators and nurse managers need to be informed of both its magnitude and its possible impact upon clinical practice. In addition, additional student support structures are clearly required within the university setting particularly with regards to writing skills and assignment construction.

Ivolving mothers in research studies: practical considerations.

The experiences of a researcher undertaking a qualitative study exploring mothers' experiences of caring for children with complex needs are used to illustrate the practical and professional issues that can arise in such studies. These children require significant technical care for airway management, feeding, seizure management and personal care in the home. Given the pressures on their time, collecting data from the mothers in the home setting took at least twice as long as planned and required significant travel and time. Care needs of the children and presence of siblings resulted in frequent disruptions to interviews and affected the quality of the data collected. Professional issues such as the mixed role of researcher and nurse and how to manage situations that gave cause for concern also needed to be considered. Researchers undertaking such studies should be prepared for the complex issues that can arise when undertaking interviews with mothers in the home situation.