'With every fibre of their being': Perspectives of healthcare professionals caring for children with non-malignant life-limiting conditions.

BACKGROUND: Children with non-malignant life-limiting conditions (NMLLCs) constitute the largest proportion of children requiring palliative care. In part, due to technological advances, growing numbers of such children are experiencing improved survival. Care is mostly provided at home by the family, with significant professional input at different points in the child's life trajectory. This study explored the experience of healthcare professionals caring for this cohort of children. METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from 12 healthcare professionals' including nurses, social workers and doctors. Data were analysed using thematic analysis. RESULTS: The findings highlighted the unfailing determination and dedication of healthcare professionals who provided care despite challenges with what seemed like 'with every fibre of their being'. Three key themes marked such strength and commitment; those were 'being there', 'being focused' and 'being strong'. 'Being there' explicitly highlighted expert care that was individualized and responsive to the child and family's unique needs. The provision of such care was often threatened and potentially compromised by the intricacies and challenges associated with children's palliative care (CPC) and service provision. 'Being focused' captured the sense that the healthcare professionals remained entirely focused on providing expert care despite these challenges. 'Being strong' epitomized the personal and professional impact on healthcare professionals who are working in this area and the manner in which they sustain themselves in 'being focused' and in 'being there'. CONCLUSIONS: The healthcare professionals demonstrated their unwavering commitment to deliver quality care required by children and families, however against a background of issues relating to organizational constraints. The findings have implications for education/service providers such as the need for specific palliative care education at both pre-registration level and continuing professional development.

'Starting Out in Haziness': Parental Experiences Surrounding the Diagnosis of their Child's Non-Malignant Life-Limiting Condition in Ireland.

PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from twenty-three parents of children diagnosed with non-malignant life-limiting conditions. FINDINGS: 'Starting out in haziness' was the central concept when parents' recounted the time they learnt of their child's diagnosis. Analysis revealed three main distinct but interconnected themes within this concept helping us better understand the experiences of parents at this particular time, those being: 'Entering a whole new world', 'Acquiring a learner permit' and 'Navigating the unknown territory'. CONCLUSION: Learning of their child's diagnosis was highly distressing for parents and was marked with emotional chaos. Parents' process of realization regarding the diagnosis was related to the diagnostic process. Information and communication needs should be individualized accordingly. The findings have implications for service provision, particularly with regard to how supportive care is delivered at this time.

"Transition from children's to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison".

BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children's to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory. METHODS: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements. RESULTS: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making. CONCLUSIONS: The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition.

The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: A realist review of the literature.

BACKGROUND: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly, CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP, their family, and health professionals can be challenging. The use of a personal health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. However, PHR implementation has proved difficult due to technical, organisational, and professional barriers. The aim of this realist review is to identify the factors, which help or hinder the use of PHRs with CYP living with a complex health condition. METHODS: Systematic realist review. Literature was sourced from six databases: Medline, Embase, CINAHL, PsychInfo, The Cochrane Library, and Science Direct (from 1946 to August Week 3 2018). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tool. RESULTS: Nine articles were included. Contextual factors, which helped implementation, included the CYP having a high perception of need for a PHR and a high level of desire for self-management. Service providers and CYP need knowledge about the purpose and benefits of the PHR, and organisations need a dedicated person to facilitate PHR use. Mechanisms triggered by the PHR included improved understanding and knowledge of health care condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their health care. Outcomes for CYP included improved self-advocacy and communication. CONCLUSION: Clearer definitions of which young people would benefit from using a PHR must be established to inform which organisations and service providers would be best suited to PHR implementation.

The role of hospice in the transition from hospital to home for technology-dependent children-A qualitative study.

AIMS AND OBJECTIVES: To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. BACKGROUND: In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable. DESIGN: This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology. METHODS: Data collection was carried out in 2013. Interviews took place with parents (n = 5) and focus groups with professionals (n = 26) who had experience of step-down care. RESULTS: Multiple benefits of step-down in the hospice were clear. Both sets of accounts suggested that for children and families life was "on hold" in hospital. Hospice was considered a home-like environment where the child and family could "live again". Parents reflected that, in hospice they were "living, not existing" while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs. CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home.

Collaborating across the threshold: The development of interprofessional expertise in child safeguarding.

This article reports on an empirical study of the expertise that different professionals develop in working together to safeguard children. The research involved three key professional groups who work with children: nursing, teaching, and social work. The methodology used a clinical scenario and critical incident to explore professional perspectives and experiences of collaboration. Data collection was via semi-structured interviews with a sample of 18 practitioners, composed of pre- and post-qualifying practitioners from each professional group. Data analysis was undertaken through an inductive process, with open coding of transcripts followed by the synthesis of themes into a qualitative framework. The findings identified different elements of interprofessional expertise including assessment and decision-making, responsibility, risk and uncertainty, managing relationships, and dealing with conflict and difficulty. Collaborative activity was found to be shaped by the threshold between statutory and non-statutory services and mediated by the relationship between practitioners and parents. The article concludes by exploring constraints and opportunities for addressing potential gaps in interprofessional expertise in this area.

Disorder and disconnection: parent experiences of liminality when caring for their dying child.

Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n = 25) of children who had died. Findings reveal parents' experiences to be characterised by personal disorder and transformation as well as social marginalisation and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognise the chronic nature of felt liminality can impede parents' effective transition.

The challenge to health professionals when carers resist truth telling at the end of life: a qualitative secondary analysis.

AIMS AND OBJECTIVES: To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling. BACKGROUND: Policy encourages normalisation of death, but carers may act to protect or prevent the patient from being told the truth. Little is known about the impact on staff. DESIGN: Secondary analysis of data using a supra-analysis design to identify commonality of experiences. METHODS: Secondary 'supra-analysis' was used to transcend the focus of two primary studies in the UK, which examined staff perspectives in a palliative children's and a palliative adult setting, respectively. The analysis examined new theoretical questions relating to the commonality of issues independently derived in each primary study. Both primary studies used focus groups. Existing empirical data were analysed thematically and compared across the studies. RESULTS: Staff reported a hiding of the truth by carers and sustained use of activities aimed at prolonging life. Carers frequently ignored the advance of end of life, and divergence between staff and carer approaches to truth-telling challenged professionals. Not being truthful with patients had a deleterious effect on staff, causing anger and feelings of incompetence. CONCLUSIONS: Both children's and adult specialist palliative care staff found themselves caught in a dilemma, subject to policies that promoted openness in planning for death and informal carers who often prevented them from being truthful with patients about terminal prognosis. This dilemma had adverse psychological effects upon many staff. RELEVANCE TO CLINICAL PRACTICE: There remains a powerful death-denying culture in many societies, and carers of dying patients may prevent staff from being truthful with their patients. The current situation is not ideal, and open discussion of this problem is the essential first step in finding a solution.

We are not alone: international learning for professionals caring for children requiring palliative care.

BACKGROUND: Educational opportunities for professionals working with children requiring palliative care are central to future development within the specialty across countries. International educational initiatives involving a range of professionals are important for learning with and from others working within the field. AIM: To explore the experiences and value to students from participating in an international online discussion forum. METHOD: This article examines one such initiative; the use of an international asynchronous discussion forum with students in Melbourne, Australia and Belfast, UK who work with children and families. The innovation is examined and student perspectives of the forum's value are presented. RESULTS: Students endorsed the value of the forum, identifying three main areas of learning: differences across locations within countries, respecting different views and being open, and need for continued learning within children's palliative care. The overarching theme 'we are not alone' supported the idea that participation in the international discussion forum enabled students to see a broader perspective. Ideas for future developments of similar forums are also explored.

From pregnancy to palliative care: advancing professional midwifery practice?

Historically midwives may have not considered palliative care as a part of their professional role. Enhanced technologies and antenatal screening have broadened the boundaries of care. However do midwives truly embrace the philosophy of palliative care into their practice? This paper presents the discussion round a case study that demonstrates the evolving area of advanced practice: perinatal palliative care. What we highlight is that midwives in fact have an important collaborative role to play in ensuring that palliative care for the baby and family starts as soon as a life-limiting condition is recognised, thus ensuring best care and support are provided for those parents and families for whom pregnancy sadly leads to palliative care. Five key lessons for practice are outlined.

Perspectives of an international education initiative in children's palliative care.

Education is viewed as central to improving future palliative care for children and families across all countries. International education initiatives will ensure practitioners are aware of global health issues and can provide culturally sensitive care. Creative and innovative means of meeting such directives are required to achieve meaningful student learning. This paper focuses on one innovation, a children's palliative care workshop using case studies as a teaching method, with nursing students from the USA and nursing and midwifery students from the UK. Key learning points arising from student evaluation were recorded under three main themes, these were: differences across countries, similarities across countries, and making learning fun and memorable. Findings indicated that this joint learning activity was viewed positively by all students and has enabled them to learn with and from each other, potentially impacting on their future practice.

Simulated learning for staff at a children's hospice: a quality improvement project.

Simulated learning has well known positive effects but its use in palliative care education is limited. A quality improvement project was undertaken at a children's hospice to develop and evaluate simulation workshops. The aim was to increase the knowledge, skills and confidence of nurses and healthcare assistants in managing challenging situations commonly experienced when caring for children with life-limiting conditions and their families. The Plan, Do, Study, Act (PDSA) model for improvement was used to test simulation workshops on a small scale using a post-workshop questionnaire and reflective diaries. Despite some initial anxiety, participants felt that the workshop had enhanced their confidence, knowledge and skills, particularly in relation to conducting challenging conversations. The project has provided insight and evidence to develop simulated learning at the children's hospice and further afield.

Improving the impact of pharmacy interventions in hospitals.

The clinical and pharmaceutical interventions of pharmacy professionals are considered impactful inputs towards optimised patient care and safety, by rationalising prescriptions, enhancing therapeutic choices and reducing and preventing medication errors and adverse effects. Pharmacy interventions (PIs), related to the identification, prevention and resolution of drug-related problems, should be recorded for optimal clinical governance and potential health outcomes.Between October 2020 and October 2021, the community hospitals at Powys Teaching Health Board recorded 158 PIs, corresponding to 0.4 interventions per staff per week. Only two members of the team were recording these PIs. Poor indicative PIs can result in lost opportunities for medication optimisation and prescribing rationalisation, increased costs and unidentified training potential.The aims of this project were (1) to record 180 interventions between 22 November 2021 and 8 April 2022 (20 weeks), corresponding to an average threefold increase, compared to the interventions recorded between October 2020 and October 2021 (52 weeks); (2) to have all hospital pharmacy staff recording at least one intervention during the same period.The number of interventions recorded and the number of pharmacy staff recording each intervention were two process measures. The project was completed through two Plan-Do-Study-Act cycles and applied theory on managing change in healthcare.The most successful intervention influencing positively the process measures was the implementation of a new Pharmacy Intervention Record Tool (xPIRT) toolkit that included an online recording tool (xPIRT) and an interactive panel with up-to-date results from all interventions recorded (xPIRT Dashboard). Motivating change was proven to be one of the best determinants of user satisfaction and engagement that contributed to meet the project's targets. xPIRT Dashboard provided staff the capacity to act on possible personal motivators and the possibility to improving care with medicines on their wards. The implementation of xPIRT toolkit was able to increase the representativity and significance of PIs recorded by the hospital pharmacy team, and it is expected to be used for personal professional development, demonstrating team activity and impact, service planning, prescribing practice optimisation and to identify education/training needs. This toolkit can be easily applied and adapted to other health organisations, settings and services.

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.

Using xPIRT to Record Pharmacy Interventions: An Observational, Cross-Sectional and Retrospective Study.

Medication errors and omissions can potentially cause harm, prolong a hospital stay, lead to co-morbidities and even death. Pharmacy interventions (PI) ensure that these errors are identified and addressed, leading to improved patient safety and prescriber practice. Particularly in community hospitals, many only having general practitioners and not specialist doctors in their medical teams, PIs assume a strategic role. The PIs recorded throughout 8 months (between November 2021 and June 2022) in the community hospital wards in Powys, Wales, UK, using xPIRT (Pharmacy Intervention Recording Tool), a new pharmacy intervention record toolkit, were subjected to a retrospective analysis. The data were organised by location, drug, severity, acceptance, cost avoidance and intervention type. Significant prescribing errors were identified, which can potentially be different from those recorded in acute settings. Our results also informed on the need for integrated electronic prescribing systems paired with a PI recording tool to address effectively prescribing inaccuracies. Overall, this study was able to identify pharmacy teams as key to improve patient safety and care while contributing to significant cost-savings, through the recording of PI using xPIRT.

Reflecting on palliative care for children, young people and their families: a revised model.

The unique needs of children requiring palliative care and their families have been increasingly recognised on a global scale. The complexities of such care, the unpredictability of the illness trajectory and increased choice in terms of where care is provided has led to challenges for nurses/practitioners striving to provide optimal care for these families. Working in partnership with children and families and reflecting on practice are key issues in providing care and support. Reflective models are frequently used as a tool for two reasons: firstly, to reflect on practice with the aim of quality improvement; secondly, to help practitioners explore difficult or challenging aspects of care negotiated with families. Here, the authors report on a specialised model that has been developed and updated for use within children's palliative care. For reasons of confidentiality, a fictitious case study is used to illustrate how this model could be implemented during a debriefing session following the death of a child. While more research is needed, initial trials of the model by the authors suggests that using specialised reflective models and frameworks can help to facilitate such discussions in children's palliative care.

'Managing an unexpected life - a caregiver's career': Parents' experience of caring for their child with a non-malignant life-limiting condition.

Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper explores the prevalent and all-consuming experiences of parents caring for their children. A qualitative descriptive study design was used. Twenty-three parents (both mothers and fathers) were interviewed. Transcribed interview data were analyzed using thematic analysis. 'Managing an unexpected life' was the central concept when parents recounted ongoing efforts to address the emotional and practical effects of their child's condition on their life and that of their family. Analysis revealed three main distinct but interrelated themes within the concept of 'Managing an unexpected life' helping us enhance our understanding of parents' experiences: 'Striving for normality', 'Becoming the expert' and 'Fighting for your child'. Findings suggest that the central concept of 'Managing an unexpected life' appeared to be in keeping with a caregiver's career. Findings likewise suggest the need for improved and focused support and services to enhance parents' career caregiving.

Enhancing knowledge of mental health issues among children's nursing students: evaluation of a service user-led workshop.

BACKGROUND: Over the past 20 years, the number of children and young people with mental health issues has increased. During their clinical placements, children's nursing students often encounter such service users, as well as mothers with mental health issues such as postnatal depression. Many of these students have reported feeling inadequately prepared to meet the needs of these service users. AIM: To evaluate a service user-led workshop to improve the knowledge and confidence of children's nursing students in caring for children and young people with mental health issues. METHOD: One university in the south of England ran an interactive workshop as part of a final-year module for BSc and MSc children's nursing students. The workshop was facilitated by service users who had experienced mental health issues. Questionnaires were administered before and after the workshop to collect data from students who attended, then quantitative and qualitative analyses of the data were conducted. FINDINGS: This study found that children's nursing students gained knowledge and confidence in caring for children and young people with mental health issues after attending the workshop. Four themes were identified from the pre-questionnaire data: fear and anxiety; boundaries; mixed experiences; and learning on the job. The themes of boundaries and learning on the job were identified again in the post-questionnaire data, as well as the additional themes of 'being with, rather than doing' and 'further knowledge'. CONCLUSION: Service user involvement is an essential aspect of nurse education due to its positive and motivating effects on students. Future research could explore the optimal type of service user input required at different stages of nurse education, to ensure that it enhances the development of students' knowledge and confidence.