Communication strategies and persuasion as core components of shared decision-making for children with life-limiting conditions: A multiple case study.

BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. AIM: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. DESIGN: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. SETTING/PARTICIPANTS: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. FINDINGS: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child's best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child's psychosocial wellbeing. CONCLUSIONS: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals' moral reasoning may assist the process of shared decision-making.

A regional evaluation of the health care utilization and outcomes of children and young people with long-term ventilation needs.

BACKGROUND: Globally, the number of children and young people (CYP) with long-term ventilation (LTV) needs is increasing, with high associated health care costs, due to frequent hospital admissions and contact with community health care services. However, demographic, health care utilization and outcome details of the CYP cared for locally is unknown. This study aimed to examine health care utilization and outcomes for this patient population. METHODS: Routinely collected data from 2014 to 2018 were extracted from local LTV team records and from hospital electronic patient records. Descriptive and inferential statistical analysis was performed using SPSS 17. RESULTS: A total of 112 CYP aged 0-17 years old were included in the evaluation. Sixty per cent (n = 67) commenced ventilation in hospital, and 62% (n = 69) had at-least one hospitalization event whilst they were on LTV, with a median length of stay of 3 days. Most hospitalizations were unplanned and respiratory in nature. Ninety-five per cent (n = 106) of CYP accessed at least one clinic appointment whilst on LTV, with a median of 20 outpatient clinic appointments during the study period. The majority of CYP received time-intensive support from LTV nurses and physiotherapists during the period that they received LTV. Minimal seasonal variation existed in relation to hospital admissions. Year on year increasing trend of hospital admissions was noted. The observed mortality rate was 3.6% (n = 4), 72.3% (n = 81) remained active on LTV, 14% (n = 16) were liberated from their ventilation and 9% (n = 10) transitioned to adult care by the end of the study. CONCLUSION: The study highlights the most common modes of health care utilization for CYP with LTV needs. To enable formalization of future resource planning and accurate assessment of health care utilization in evaluations, there is an urgent need to create a systematic approach for relevant LTV data collection.

Paediatric intensive care follow-up provision in the United Kingdom and Republic of Ireland.

The objective of this study was to examine the characteristic, content, and role of Paediatric Intensive Care Units (PICUs) in the provision of follow-up for children and their families' post-intensive care discharge in the United Kingdom (UK) and Republic of Ireland (RoI). The study followed a descriptive self-reported, web-based survey design. "In-hospital PICU follow-up" was defined as follow-up delivered by the PICU team following PICU discharge but before hospital discharge and "post-discharge PICU follow-up" was defined as follow-up delivered by the PICU team following hospital discharge. The survey was administered to all 28 PICUs in the UK and RoI. Paediatric intensive care medical directors or delegated individuals participated. Data were collected between September 2017 and January 2018 with a response rate of 79% (n = 22/28). Twelve units provided either in-hospital and/or post-discharge PICU follow-up. Ten (45%) PICUs reported providing in-hospital follow-up, with half (n = 5) using an eligibility criteria for in-hospital follow-up, which related to disease groups. The most frequently reported form of in-hospital PICU follow-up consisted of face-to-face patient consultation (n = 8) by a PICU doctor (n = 5) and/or nurse (n = 4). The time at which initial contact was made was usually not predetermined (n = 4) and the assessment of care needs included are tracheostomy care (n = 4), respiratory care (n = 4), and sedative medication weaning plan (n = 5). Four PICUs reported to provide post-discharge follow-up. This involved telephone (n = 2), follow-up clinic consultations (n = 1) or home visits (n = 1), provided predominantly by PICU doctors (n = 2), with their activity directed by patient needs (n = 3). Despite increasing evidence to suggest PICU survivors and their families experience negative sequalae post-PICU discharge, less than half of PICUs surveyed provide in-hospital follow-up and only a minority provide post-discharge follow-up. There is variation in the delivery, content, and format of in-hospital and post-discharge PICU follow-up in the UK and RoI.

Study protocol for a multicentre longitudinal mixed methods study to explore the Outcomes of ChildrEn and fAmilies in the first year after paediatric Intensive Care: the OCEANIC study.

INTRODUCTION: Annually in the UK, 20 000 children become very ill or injured and need specialist care within a paediatric intensive care unit (PICU). Most children survive. However, some children and their families may experience problems after they have left the PICU including physical, functional and/or emotional problems. It is unknown which children and families experience such problems, when these occur or what causes them. The aim of this mixed-method longitudinal cohort study is to understand the physical, functional, emotional and social impact of children surviving PICU (aged: 1 month-17 years), their parents and siblings, during the first year after a PICU admission. METHODS AND ANALYSIS: A quantitative study involving 300 child survivors of PICU; 300 parents; and 150-300 siblings will collect data (using self-completion questionnaires) at baseline, PICU discharge, 1, 3, 6 and 12 months post-PICU discharge. Questionnaires will comprise validated and reliable instruments. Demographic data, PICU admission and treatment data, health-related quality of life, functional status, strengths and difficulties behaviour and post-traumatic stress symptoms will be collected from the child. Parent and sibling data will be collected on the impact of paediatric health conditions on the family's functioning capabilities, levels of anxiety and social impact of the child's PICU admission. Data will be analysed using descriptive and inferential statistics. Concurrently, an embedded qualitative study involving semistructured interviews with 24 enrolled families at 3 months and 9 months post-PICU discharge will be undertaken. Framework analysis will be used to analyse the qualitative data. ETHICS AND DISSEMINATION: The study has received ethical approval from the National Health Services Research Ethics Committee (Ref: 19/WM/0290) and full governance clearance. This will be the first UK study to comprehensively investigate physical, functional, emotional and social consequences of PICU survival in the first-year postdischarge.Clinical Trials Registration Number: ISRCTN28072812 [Pre-results].

Parents' experiences of care decisions about children with life-limiting illnesses.

AIM: To understand the 'lived experience' of parents throughout the process of making and revising end of life care decisions for their child. METHOD: Three mothers who had been bereaved participated in semi-structured interviews. These were recorded, transcribed and analysed using interpretative phenomenological analysis. FINDINGS: Two overarching themes were identified: making decisions and revising and implementing end of life care plans. Sub-themes included: who should be the decision maker; when discussions should be initiated; the values underpinning the plans; revisiting the plans; and barriers and facilitators to their implementation. CONCLUSION: Parents understand the importance of planning for the end of their child's life but find the process difficult. They also find it a challenge to verbalise their decisions at the end of their child's life and value having the decision partly taken away from them. Professionals can assist parents by using a non-dissent model of decision making. The parents' values are important in these decisions and should be elicited by professionals during the initial stages of decision making.