The elements of end-of-life care provision in paediatric intensive care units: a systematic integrative review.

BACKGROUND: Deaths in paediatric intensive care units (PICUs) are not uncommon. End-of-life care in PICUs is generally considered more challenging than other settings since it is framed within a context where care is focused on curative or life-sustaining treatments for children who are seriously ill. This review aimed to identify and synthesise literature related to the essential elements in the provision of end-of-life care in the PICU from the perspectives of both healthcare professionals (HCPs) and families. METHODS: A systematic integrative review was conducted by searching EMBASE, CINAHL, MEDLINE, Nursing and Allied Health Database, PsycINFO, Scopus, Web of Science, and Google Scholar databases. Grey literature was searched via Electronic Theses Online Service (EthOS), OpenGrey, Grey literature report. Additionally, hand searches were performed by checking the reference lists of all included papers. Inclusion and exclusion criteria were used to screen retrieved papers by two reviewers independently. The findings were analysed using a constant comparative method. RESULTS: Twenty-one studies met the inclusion criteria. Three elements in end-of-life care provision for children in the PICUs were identified: 1) Assessment of entering the end-of-life stage; 2) Discussion with parents and decision making; 3) End of life care processes, including care provided during the dying phase, care provided at the time of death, and care provided after death. CONCLUSION: The focus of end-of-life care in PICUs varies depending on HCPs' and families' preferences, at different stages such as during the dying phase, at the time of death, and after the child died. Tailoring end-of-life care to families' beliefs and rituals was acknowledged as important by PICU HCPs. This review also emphasises the importance of HCPs collaborating to provide the optimum end-of-life care in the PICU and involving a palliative care team in end-of-life care.

Decision-making experiences of health professionals in withdrawing treatment for children and young people: A qualitative study.

OBJECTIVE: To explore factors that influence professionals in deciding whether to withdraw treatment from a child and how decision making is managed amongst professionals as an individual and as a team. STUDY DESIGN: Semi-structured interviews were conducted with a purposive sample of health professionals working at a UK Children's Hospital, with children with life-limiting illnesses whose treatment has been withdrawn. Data were transcribed verbatim, anonymized and analysed using a thematic framework method. RESULTS: A total of 15 participants were interviewed. Five interrelated themes with associated subthemes were generated to help understand the experiences of health professionals in decision making on withdrawing a child's treatment: (1) understanding the child's best interests, (2) multidisciplinary approach, (3) external factors, (4) psychological well-being and (5) recommendations to support shared decision making. CONCLUSION: A shared decision-making approach should be adopted to support professionals, children and their families to make decisions collectively.

The role of Magnetic Resonance Images (MRIs) in coping for patients with brain tumours and their parents: a qualitative study.

BACKGROUND: When children and young people (CYP) are diagnosed with a brain tumour, Magnetic Resonance Imaging (MRI) is key to the clinical management of this condition. This can produce hundreds, and often thousands, of Magnetic Resonance Images (MRIs). METHODS: Semi-structured interviews were undertaken with 14 families (15 parents and 8 patients), and analysed using Grounded Theory. Analysis was supported by the Framework Method. RESULTS: Although the focus of the research was whether paediatric patients and their families find viewing MRIs beneficial, all patients and parents discussed difficult times during the illness and using various strategies to cope. This article explores the identified coping strategies that involved MRIs, and the role that MRIs can play in coping. Coping strategies were classified under the aim of the strategy when used: 'Normalising'; 'Maintaining hope and a sense of the future'; 'Dealing with an uncertain future'; and 'Seeking Support'. CONCLUSIONS: Coping and finding ways to cope are clearly used by patients and their families and are something that they wish to discuss, as they were raised in conversations that were not necessarily about coping. This suggests clinicians should always allow time and space (in appointments, consultations, or impromptu conversations on the ward) for patient families to discuss ways of coping. MRIs were found to be used in various ways: to maintain or adapt normal; maintain hope and a sense of the future; deal with an uncertain future; and seek support from others. Clinicians should recognise the potential for MRIs to aid coping and if appropriate, suggest that families take copies of scans (MRIs) home. Professional coaches or counsellors may also find MRIs beneficial as a way to remind families that the child is in a more stable or 'better' place than they have been previously.

Children's palliative care education and training: developing an education standard framework and audit.

BACKGROUND: The need to align the range of guidance and competencies concerning children's palliative care and develop an education framework have been recommended by a UK All-Party Parliament Group and others. In response to these recommendations the need for a revised children's palliative care competency framework was recognized. A Children's Palliative Care Education and Training Action Group, comprising champions in the field, was formed across UK and Ireland in 2019 to take this work forward. Their aim was to agree core principles of practice in order to standardize children's palliative care education and training. METHODS: Over four meetings the Action Group reviewed sources of evidence and guidance including palliative care competency documents and UK and Ireland quality and qualification frameworks. Expected levels of developing knowledge and skills were then agreed and identified competencies mapped to each level. The mapping process led to the development of learning outcomes, local indicative programme content and assessment exemplars. RESULTS: Four sections depicting developing levels of knowledge and skills were identified: Public Health, Universal, Core, Specialist. Each level has four learning outcomes: Communicating effectively, Working with others in and across various settings, Identifying and managing symptoms, Sustaining self-care and supporting the well-being of others. An audit tool template was developed to facilitate quality assurance of programme delivery. The framework and audit tool repository is on the International Children's Palliative Care Network website for ease of international access. CONCLUSIONS: The framework has received interest at UK, Ireland and International launches. While there are education programmes in children's palliative care this is the first international attempt to coordinate education, to address lay carer education and to include public health.

Psychosocial and Support Needs of the Main Caregiver for Adolescents and Young Adults Undergoing Treatment for Cancer.

BACKGROUND: Family relationships and social networks are critically important to adolescents and young adults (AYAs) with cancer, impacting their experience and well-being throughout the cancer trajectory. A cancer diagnosis impacts the development of independence and an adult identity, which can present challenges to psychosocial well-being needs and relationships between caregivers and AYAs. OBJECTIVE: The aim of this study was to explore the psychosocial and support needs of the main caregivers of AYAs. METHODS: This is a secondary analysis of the BRIGHTLIGHT caregiver survey, exploring items pertaining to support offered/engaged with, appraisal of helpfulness, and caregivers' emotional and psychological distress experience. Descriptive statistics, a correlational analysis, and a 1-way analysis of variance were conducted. RESULTS: There were 518 caregiver responses (62%). Over half received information about their caregiving needs, with the majority finding this very/fairly helpful. Most (80%) of those who had not received the information would have valued it. High levels of negative emotional and psychological well-being were reported, with 91% feeling depressed or anxious since the AYAs' diagnosis and 41% always/often experiencing these feelings. Total distress was associated with being younger, a parent, female, and unemployed, and earning a below-average income. CONCLUSIONS: The needs of caregivers are broad and multidimensional; however, some characteristics were associated with higher distress. When caregiver-specific information was provided by healthcare professionals, it was well received. IMPLICATIONS FOR PRACTICE: Healthcare professionals should consider caregivers' needs individually and provide/signpost to support. Caregivers need to be involved in designing and implementing future research, given the heterogeneity of needs identified.

Moral distress in nurses in developing economies: an integrative literature review.

Background: Moral distress has been extensively studied in developed economies; however, not much in terms of studies has been carried out in developing economies. Objective: To review the literature reporting the experience of moral distress in nurses in health care settings in developing economies. Design: An integrative literataure review was used. Method: Cumulative Index of Nursing and Allied Health Literature, Medical Literature Analysis and Retrieval System Online Cochrane and Psych INFO were searched to retrieve titles and abstracts of papers on the experience of moral distress in nurses in developing economies. Results: Sixteen articles reporting the experience of moral distress in nurses in developing economies published between 1984 and March 2019 were used for the review. Analysis of the findings revealed seven themes, nurses' experience of moral distress, inadequate material and human resources, end-of-life challenges, cultural and religious beliefs as a source of moral distress, perceived inactions of medical and nursing staff, impact of moral distress on nurses in developing economies and coping strategies. Conclusion: There is paucity of empirical studies on moral distress in nurses in developing economies. More qualitative studies are needed in various cultural settings to enhance its understanding in nurses working in developing economies.

Moral distress experienced by neonatal intensive and paediatric care nurses in Northern Ghana: a qualitative study.

Background: Moral distress has been studied widely in nursing but not in developing economies. Aim: To investigate how moral distress is experienced by nurses working in neonatal intensive care and paediatric wards in Northern Ghana and to determine support measures offered by nurse managers. Method: Qualitative descriptive method. Forty nurses and fourteen nurse managers working with children in four hospitals in Northern Ghana were interviewed. Thematic data analysis was carried out. Results: Six themes were identified: nurses experience morally distressing situations due to a variety of causes; the impact of morally distressing situations on nurses; coping mechanisms of nurses who experienced morally distressing situations; recommendations made by the nurses to reduce the incidence of moral distress; inadequate support measures available to nurse managers and nurse managers experience moral distress too. Conclusion: The causes of moral distress in developed and developing economies are similar. The frequency and intensity of moral distress is high in Northern Ghana. Consistent with other studies conducted in Africa, nurses and nurse managers relied on their religious faith as a form of resilience. No support measures are available to nurse managers to support nurses who experience moral distress.

Qualitative study: patients' and parents' views on brain tumour MRIs.

BACKGROUND: MRI is essential to the clinical management of children and young people with brain tumours. Advances in technology have made images more complicated to interpret, yet more easily available digitally. It is common practice to show these to patients and families, but how they emotionally respond to, understand and value, seeing brain tumour MRIs has not been formally studied. METHODS: Qualitative semi-structured interviews were undertaken with 14 families (8 patients, 15 parents) purposively sampled from paediatric patients (0 to 18 years) attending a large UK children's hospital for treatment or monitoring of a brain tumour. Transcripts were analysed thematically using the Framework Method. RESULTS: Four themes were identified: Receiving results (waiting for results, getting results back, preferences to see images), Emotional responses to MRIs, Understanding of images (what they can show, what they cannot show, confusion) and Value of MRIs (aesthetics, aiding understanding, contextualised knowledge/emotional benefits, enhanced control, enhanced working relationships, no value). All families found value in seeing MRIs, including reassurance, hope, improved understanding and enhanced feeling of control over the condition. However emotional responses varied enormously. CONCLUSIONS: Clinical teams should always explain MRIs after 'framing' the information. This should minimise participant confusion around meaning, periodically evident even after many years. Patient and parent preferences for being shown MRIs varied, and often changed over time, therefore clinicians should identify, record and update these preferences. Time between scanning and receiving the result was stressful causing 'scanxiety', but most prioritised accuracy over speed of receiving results.

The use of a theatre workshop in developing effective communication in paediatric end of life care.

Being able to communicate effectively is an essential skill for all nurses. Communication in paediatric end of life care can be challenging for both the student and lecturer as it is a rare experience and challenging to teach. Innovative approaches to teaching communication skills such as role play, simulation and drama have been used; however there is a dearth of literature examining the use of drama in this specialist context. The aim of this study was to explore the effectiveness of a novel workshop in teaching transferable knowledge and skills in palliative, end of life and bereavement care communication to a convenience sample of first year pre-registration nursing students undertaking clinical skills training at a UK university. Qualitative and quantitative data were obtained from pre and post intervention questionnaires exploring student's perception of communication skills. Qualitative data were analysed thematically and quantitative data presented as standard descriptive statistics. The novel communication workshop facilitated students' exploration of how good and poor communication looks and feels and introduced aids to inform communication in clinical practice. Exposure to different learning approaches provided opportunities to both gain confidence in engaging in new learning activities and develop knowledge and skills through purposeful engagement.

An exploration of the data collection methods utilised with children, teenagers and young people (CTYPs).

BACKGROUND: The impact of cancer upon children, teenagers and young people can be profound. Research has been undertaken to explore the impacts upon children, teenagers and young people with cancer, but little is known about how researchers can 'best' engage with this group to explore their experiences. This review paper provides an overview of the utility of data collection methods employed when undertaking research with children, teenagers and young people. A systematic review of relevant databases was undertaken utilising the search terms 'young people', 'young adult', 'adolescent' and 'data collection methods'. The full-text of the papers that were deemed eligible from the title and abstract were accessed and following discussion within the research team, thirty papers were included. FINDINGS: Due to the heterogeneity in terms of the scope of the papers identified the following data collections methods were included in the results section. Three of the papers identified provided an overview of data collection methods utilised with this population and the remaining twenty seven papers covered the following data collection methods: Digital technologies; art based research; comparing the use of 'paper and pencil' research with web-based technologies, the use of games; the use of a specific communication tool; questionnaires and interviews; focus groups and telephone interviews/questionnaires. The strengths and limitations of the range of data collection methods included are discussed drawing upon such issues as of the appropriateness of particular methods for particular age groups, or the most appropriate method to employ when exploring a particularly sensitive topic area. CONCLUSIONS: There are a number of data collection methods utilised to undertaken research with children, teenagers and young adults. This review provides a summary of the current available evidence and an overview of the strengths and limitations of data collection methods employed.