Kate Oulton

Devoted protection: How parents of children with severe learning disabilities manage risks

This paper aims to explore the risk perceptions of parents caring for children who have severe learning disabilities and complex medical needs. The paper draws upon a qualitative study involving 20 parents, mostly mothers. The findings document the demanding care requirements which these parents had to meet. Parents viewed their role in terms of devoted vocation rather than meeting a burdensome obligation. This dedication interacted with heightened risk consciousness to fuel a sense of undelimited responsibility. Parents tended not to place sectoral or temporal boundaries around their responsibility for the care of their child. Their approach was mediated by a prevailing but not universal mistrust of the caring capabilities of others. Although parents sometimes temporarily transferred caring duties to others, they usually retained a sense of anxious responsibility for such care, supervising or auditing the activities of other carers rather than delegating risk ownership. Trust was conferred on others only when they had demonstrated a good record of accomplishment of care for the child, and were seen to have acquired detailed idiographic understanding of their individual complex needs. The findings can be understood in relation to a broader societal context of individualisation of responsibility.

Making pain assessment more accessible to children and parents: can greater involvement improve the quality of care?

ObjectivesTo determine whether nursing and parental pain assessment documentation and analgesia administration increased with the use of a temporary tattoo of a pain intensity scale (TTPS) compared with a paper version of the pain scale (PPS). To document any adverse skin reactions from the use of the TTPS and to assess the feasibility and acceptability of the PPS and TTPS for use as postoperative pain assessment tools in the home and clinical setting. MethodsTwo pilot randomized controlled trials were conducted to test the TTPS intervention and the PPS control condition in children aged 6 to 12 years, after surgery. Trial 1 involved children admitted to hospital for planned inpatient surgery (n=86). Trial 2 involved children discharged home following day case surgery (n=25). ResultsThe TTPS was well accepted and there were no adverse effects. Our hypothesis that the TTPS would increase documentation of pain assessment or analgesic administration was not supported. However, a number of confounding factors may explain the findings. Children in both trials indicated greater overall satisfaction with the TTPS and responses from both parents and children suggested some aspects of the quality of the pain management experience were enhanced with use of the TTPS in both trials. DiscussionThe TTPS is a new method to engage children in pain assessment, which may have positive effects on the quality of postoperative pain assessment and management in hospital and home settings. Larger trials are needed to determine the effectiveness of the TTPS across all pediatric settings and for children with nonsurgical and also surgical pain. The findings from these pilot trials provide useful information for design and power estimation for further research in inpatient and home settings.

The Score Matters: Wide Variations in Predictive Performance of 18 Paediatric Track and Trigger Systems

Objective To compare the predictive performance of 18 paediatric early warning systems (PEWS) in predicting critical deterioration. Design Retrospective case-controlled study. PEWS values were calculated from existing clinical data, and the area under the receiver operator characteristic curve (AUROC) compared. Setting UK tertiary referral childrens hospital. Patients Patients without a ‘do not attempt resuscitation’ order admitted between 1 January 2011 and 31 December 2012. All patients on paediatric wards who suffered a critical deterioration event were designated ‘cases’ and matched with a control closest in age who was present on the same ward at the same time. Main outcome measures Respiratory and/or cardiac arrest, unplanned transfer to paediatric intensive care and/or unexpected death. Results 12 ‘scoring’ and 6 ‘trigger’ systems were suitable for comparative analysis. 297 case events in 224 patients were available for analysis. 244 control patients were identified for the 311 events. Three PEWS demonstrated better overall predictive performance with an AUROC of 0.87 or greater. Comparing each system with the highest performing PEWS with Bonferronis correction for multiple comparisons resulted in statistically significant differences for 13 systems. Trigger systems performed worse than scoring systems, occupying the six lowest places in the AUROC rankings. Conclusions There is considerable variation in the performance of published PEWS, and as such the choice of PEWS has the potential to be clinically important. Trigger-based systems performed poorly overall, but it remains unclear what factors determine optimum performance. More complex systems did not necessarily demonstrate improved performance.

Assent for children's participation in research: why it matters and making it meaningful.

BACKGROUND There are gaps in the existing evidence base about assent, with conflicting and unhelpful views prevalent. We contend that appropriate assent is a valuable process that has important consequences for childrens/young peoples participation in research. Furthermore, there is a need for a model to support researchers in making decisions about who to assent and how to do this is a meaningful way. METHODS We undertook a scoping review of the literature to assess the body of opinion on assent in research with children/young people. An anonymous online survey was conducted to gather views from the wider community undertaking research with children/young people. We also sought to gather examples of current and effective practice that could be shared beyond the level of a single institution and our own experience. Survey participants included 48 health professionals with varied levels of experience, all actively involved in research with children. RESULTS Published work, the findings from the online survey and our knowledge as experienced researchers in the field have confirmed four domains that should be considered in order for assent to be meaningful and individualized: child-related factors, family dynamics, study design and complexity and researcher and organizational factors. Mapping these domains onto the three paradigm cases for decision-making around children and young peoples assent/consent as recommended by the Nuffield Council on Bioethics has resulted in a model that will aid researchers in understanding the relationship between assent and consent and help them make decisions about when assent is appropriate. CONCLUSIONS The debate about assent needs to move away from terminology, definition and legal issues. It should focus instead on practical ways of supporting researchers to work in partnership with children, thus ensuring a more informed, voluntary and more robust and longer lasting commitment to research.

Pay More Attention: a national mixed methods study to identify the barriers and facilitators to ensuring equal access to high-quality hospital care and services for children and young people with and without learning disabilities and their families

Introduction Despite evidence of health inequalities for adults with intellectual disability (ID) there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (CYP) with ID and their families. We do not know how relevant existing recommendations and guidelines are to CYP, whether these are being applied in the paediatric setting or what difference they are making. Evidence of parental dissatisfaction with the quality, safety and accessibility of hospital care for CYP with ID exists. However, the extent to which their experience differs from parents of CYP without ID is not known and the views and experiences of CYP with ID have not been investigated. We will compare how services are delivered to, and experienced by CYP aged 5–15 years with and without ID and their families to see what inequalities exist, for whom, why and under what circumstances. Methods and analysis We will use a transformative, mixed methods case study design to collect data over four consecutive phases. We will involve CYP, parents and hospital staff using a range of methods; interviews, parental electronic diary, hospital and community staff questionnaire, patient and parent satisfaction questionnaire, content analysis of hospital documents and a retrospective mapping of patient hospital activity. Qualitative data will be managed and analysed using NVivo and quantitative data will be analysed using parametric and non-parametric descriptive statistics. Ethics and dissemination The study will run from December 2015 to November 2018. We have Health Authority Approval (IRAS project ID: 193932) for phase 1 involving staff only and ethical and Health Authority Approval for phases 2–4 (IRAS project ID: 178525). We will disseminate widely to relevant stakeholders, using a range of accessible formats, including social media. We will publish in international peer-reviewed journals and present to professional, academic and lay audiences through national and international conferences.

The Experience of Long-Stay Parents in the ICU: A Qualitative Study of Parent and Staff Perspectives

Objective: Meeting the needs of parents of critically ill children is increasingly being recognized as an important factor in the child’s clinical outcome as well as the implications it has for future parenting. Little is specifically known about the experience of parents who have a child in the ICU for a prolonged period. Our objective was to understand the experiences of this group to assist in the identification of mechanisms for providing support. Design: Qualitative study based on semistructured interviews. Data were analyzed using the Framework approach. Setting: The study took place in a tertiary pediatric hospital containing three ICUs: PICU, cardiac ICU, and neonatal ICU (ICU will be used to encompass neonatal ICU, cardiac ICU, and PICU for the remainder of the article). Subjects: Seventeen members of staff and 26 parents of a child who had a long stay in one of the three ICUs. Interventions: Semistructured, tape-recorded interviews. Measurements and Main Results: Analyses identified two overarching themes, “parent process” and “parent/staff interface,” and six subthemes: adjustment, normalization/institutionalization, conflict, involvement in child’s care, individualized care, and transition. Themes have been modeled to account for the parental process during a long stay in the ICU and the potential implications for the relationships and interactions between parents and staff. Findings are presented from the data related to the parent process and parent/staff interface. Inclusion of an element in the model related to staff indicates where support mechanisms should be focused. Conclusions: Over time, long-stay families will likely become more familiar with the environment of the ICU, more knowledgeable about their child’s medical needs and more familiar with the staff looking after their child. This has a number of implications for staff working in the ICU.

The Challenges of Caring for Long-Stay Patients in the PICU

Objective: Compared to shorter-stay patients, caring for long-stay patients in the ICU entails a disproportionate burden for staff. Our objective was to gain a deeper understanding of the impact on staff of caring for children who have a prolonged stay on the PICU. Design: Qualitative study based on semi-structured interviews. Data were analyzed using the Framework approach. Setting: Children’s tertiary hospital. Participants: Seventeen members of staff (7 psychosocial staff, 7 nurses, 3 consultants) working in the PICU, neonatal ICU, or cardiac ICU (PICU will be used to encompass neonatal ICU, cardiac ICU, and PICU for the remainder of this article). Interventions: Semi-structured, tape-recorded interviews. Measurements and Main Results: Staff reported both positive and challenging aspects of caring for long-stay patients in the PICU. Five key areas relating to the challenges of caring for long-stay patients were identified: staff expectations about their work, characteristics of the patient group, the impact on staff, the impact on the wider unit, and the availability of support. Staff views were often compounded by individual cases they had been involved with or had heard about which fell at either end of the spectrum of “good” and “bad”. Conclusions: Whilst there are reported benefits associated with caring for long-stay patients, there are a number of challenges reported that may have implications for staff and the wider unit. When caring for a particular sub-group of long-stay patients, staff may be more likely to experience negative impacts. A key priority for the PICU is to ensure that support mechanisms are timely, accessible, and allow staff to explore their own reactions to their work.

‘Death is not the answer’: the challenge of measuring the impact of early warning systems

We can all remember individual children in whom a deterioration went unrecognised. Sometimes fatally. Our defences were little more than the pearls offered by senior colleagues of grave warning signs: ‘beware grunting in an infant’ or ‘watch out for a tachycardia after the temperature has fallen’. But this advice was unstructured, and children are so different, and their comorbidities so broad, we failed some of them. Paediatric Early Warning Systems (PEWS) are serious attempts to reduce the unacceptable and dangerous variability in this recognition and response process. Scoring systems should provide age-appropriate thresholds for concern for single parameters or aggregated abnormal physiology and prompt standardised responses. The idea has such natural appeal that PEWS use was soon advocated by a number of national bodies1 2 without evidence. This may have been a mistake. Many of the scores in widespread use were not calibrated or validated. When formally assessed, most had poor predictive performance.3 This is not a trivial problem because staff may choose not to raise an alarm in the absence of a raised score or may choose to ignore a score ‘because it never works for him/her’. Other than optimism, the main reason for the lack of evidence was the low event rates of critical deterioration or death within individual centres. An adequately powered trial was therefore a huge challenge. Fortunately, Parshuram and colleagues took on this challenge with the study ‘Effect of a PEWS on All-Cause Mortality in Hospitalised Paediatric Patients—EPOCH’.4 This trial …

Studying Children’s Experiences in Interactions With Clinicians: Identifying Methods Fit for Purpose:

Increased emphasis on the child’s voice and point of view in care and treatment has led to an expansion in the development of methods to access and identify their perspectives. Drawing on our experiences in a study of children with leukemia in hospital, this article explains the challenges and opportunities that arise in the use of five commonly used methods in a study of hospitalized children’s experiences with health care professionals, including the “Draw and Write” technique, a sticker activity, a paper–person exercise, informal interviews, and participant observation. Each of these methods was examined with regard to ease of use, data generation, and utility of data for accessing children’s perspectives and development of initial clinical guidance.

Being Participatory Through Interviews

Participatory research that utilises creative methods has become central to understanding children and young people and how they experience the world they live in. We argue here that ‘the interview’, used appropriately, is a useful method, an important member in the researchers’ ‘toolbox’. This chapter offers reflections on the challenges and advantages of interviews and how to make the most of these social events, where power imbalances can be levelled to gain deep insights into the experiences of those we undertake research with. Understanding the population we are working with is key to our success, and we must be reflexive in our use of methods if we are to continue to individualise our approach to the population we are working with. We therefore focus on a range of techniques, used with different populations, and make suggestions on how the interview technique can be ‘adapted’ and ‘added to’, so that it can be individualised to the population in a research study.