‘When a child dies’; the development of a collaborative education programme to enhance care and support

Leading change

Nurse leaders within the Clinical Simulation Centre (CSC) at Great Ormond Street Hospital NHS Foundation Trust (GOSH) developed an education programme in collaboration with Bereavement, Chaplaincy, Mortuary and Palliative Care services. This aided staff in developing their skills in caring for a dying child and supporting families through this critical time. The programme aims to improve the quality of care provided to families and ensure signposting to further services to meet their needs.

Where to look

Together for short lives (2012) identified that a central element of good practice is supporting staff through training to develop their knowledge, competence and confidence with frequent opportunities to develop their skills in practice. Training is particularly important in relation to communication with families, end of life care and supporting bereaved families.

During discussions, CSC faculty members explored the idea of trialling a new approach to education around death and dying. They carried out a review to explore this further with the CSC Nurse Leaders analysing data from a variety of sources, including:

  • Interviews with recently bereaved parents and families;
  • Literature search on education to support clinical staff and care around death;
  • Training Needs Analysis of clinical staff caring for children who have died or when death was imminent;
  • Faculty members’ views on the current provision of care.

Their review identified from parental feedback that there was differing approaches and language used by clinical staff which was having a huge impact on their experience and leading to unwarranted variation. This was also reflected in the findings of the training needs analysis of staff with a variation in confidence, practice and skills which, was also likely to impact on the parental experience through the initial stages of the loss of a child. Although positive experiences were captured, the evidence suggested it was more commonly negative.

What to change

The evidence from the literature including (NICE, 2016) and, significantly, the shared experiences of parents and families, identified a variation in many aspects of caring for a dying child and after death. In particular:

  • Language used and a reliance on euphemisms that can be confusing;
  • Poor knowledge regarding the legal processes around certification of death;
  • Complex processes not being well understood and poorly followed, for example Child Death Overview Panel (CDOP);
  • How, as an individual, one can offer the best support and care to family at such a critical time.

A newly designed course was required and creation of one, through collaboration with GOSH Bereavement, Chaplaincy, Mortuary and Palliative Care services, would support staff in understanding the wider scope of care for the family.

How to change

The course created was titled: ‘“When a Child Dies” Death of an Infant: key practical and communication skills’. It aimed to:

  • Support staff within an educational environment to learn the key skills;
  • Have a consistent approach;
  • Address what to say and do when a child dies.

This course has been designed and is led by the Operational Lead for Simulation, the Bereavement Services Manager (both children’s nurses) and a senior member of the Chaplaincy team. Utilising their skills in simulation-based education and bereavement care, they designed the course to directly address deficiencies in the provision of this type of care. Through innovation and passion, this course has grown from a quick 4-hour overview to a full 2-day programme. The changes made to enable this growth were implemented using a ‘Plan Do Study Act’ (PDSA) model of course evaluation.

The goal of the course is to have candidates experience the ‘day of death of an infant’. Day 1 is spent acquiring the skills and knowledge in preparation for actively participating in Day 2 using simulation scenarios following the day of an infant’s death. There is a focus on empowering clinical staff through this experiential model of education to challenge practice, enabling staff to feel more able to have difficult conversations and to provide better care at a critical time.

Link to article here


Reducing parental trauma and stress in neonatal intensive care: systematic review and meta-analysis of hospital interventions

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Image – AF.mil

Journal of Perinatology (2019)


To classify NICU interventions for parental distress and quantify their effectiveness.

Study design

We systematically reviewed controlled studies published before 2017 measuring NICU parental distress, defined broad intervention categories, and used random-effects meta-analysis to quantify treatment effectiveness.


Among 1643 unique records, 58 eligible trials predominantly studied mothers of preterm infants. Interventions tested in 22 randomized trials decreased parental distress (p < 0.001) and demonstrated improvement beyond 6 months (p < 0.005). In subgroup analyses, complementary/alternative medicine and family-centered instruction interventions each decreased distress symptoms (p < 0.01), with fathers and mothers improving to similar extents. Most psychotherapy studies decreased distress individually but did not qualify for meta-analysis as a group.


NICU interventions modestly reduced parental distress. We identified family-centered instruction as a target for implementation and complementary/alternative medicine as a target for further study. Investigators must develop psychosocial interventions that serve NICU parents at large, including fathers and parents of full-term infants.

Link to article here

A scoping review of ‘think-family’ approaches in healthcare settings

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‘Think-family’ child health approaches treat child and parent/carer health as inter-related. They are promoted within health policy internationally (also called ‘family paediatrics’ or ‘whole-family’, ‘family-centred’ approaches or ‘child-centred’ approaches within adult services).


We reviewed publications of think-family interventions. We developed a typology of these interventions using thematic analysis of data extracted from the included studies.


We included 62 studies (60% USA and 18% UK); 45/62 (73%) treated the parent as patient, helping the child by addressing parental mental health, substance and alcohol misuse and/or domestic violence. Our typology details three common mechanisms of change in relevant interventions: screening, health promotion and developing relationships (inter-professional and parent-professional).


Policy-makers, practitioners and researchers can use our typology to develop and evaluate think-family approaches within healthcare. Strong relationships between parents and professionals are key in think-family approaches and should be considered in service design. Although helping the child through the parent may be a good place to start for service development, care is needed to ensure parental need does not eclipse child need. Strategies that reach out to the parent behind the child (child as patient) and which work simultaneously with parent and child warrant attention.

Link to article here

Putting the family at the centre of newborn health – Lancet

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The arrival of a newborn is a highly anticipated occasion. But for families with preterm and ill babies, the associated health challenges and psychological burden can make the occasion a stressful one. Each year in Europe, an estimated 500 000 babies—roughly 10% of all livebirths—are born before 37 weeks of gestation. Although much progress has been made to improve survival and outcomes in the past 40 years, premature birth remains a major cause of under-5 mortality and lifelong morbidities. Regrettably, the highly variable quality of maternal and infant care in Europe means that vast outcome disparities exist both between and within countries.

Published on Nov 28, the European Standards of Care for Newborn Health aim to define and harmonise “the care and treatment that shall be provided by a neonatal service”. Recognising that improving newborn health is a truly collaborative effort, the project was conceptualised and coordinated by the parent organisation European Foundation for the Care of Newborn Infants, which brought together around 220 experts across disciplines from 31 countries to work with parent representatives. The resulting standards cover 11 key topics—starting from antenatal and perinatal care, to transition to home, ethical decision making, palliative care, and long-term follow-up.

Link to article here

Link to Standards here

Medication for ADHD: what works for adults, adolescents and children – The Mental Elf

small kid taking medicine
Image: Flickr.com

ADHD remains a controversial disorder, particularly regarding its prevalence. Raman et al. (2018) report that the past few decades have witnessed an increase in diagnosis and pharmacological management of ADHD. Social constructionists have seen this as a reflection of the contextual nature of ADHD and question the validity of the disorder (Roy, 2008). Furthermore, when UK primary care witnessed a sharp increase in ADHD diagnoses and methylphenidate prescriptions, NICE (2013) issued a statement to avoid the use of stimulants in young people with mild-moderate ADHD because of concerns about the safety and effectiveness of these medications.

Three years ago there was considerable discussion and debate when a Cochrane review by Storebø et al (2015) questioned the efficacy and tolerability of methylphenidate in children and adolescents with ADHD.

In light of controversies such as these, the robust evidence provided by Cortese et al. (2018) ‘Comparative efficacy and tolerability of medications for attention-deficit hyperactivity disorder in children, adolescents, and adults: a systematic review and network meta-analysis’ is an important step forward in understanding ADHD pharmacotherapies.

The authors made the following conclusions:

All medications, except for modafinil in adults, were more efficacious than placebo for the short-term treatment of ADHD, and they were less efficacious and less well tolerated in adults than in children and adolescents.

Amphetamines were the most efficacious compounds in children, adolescents and adults.

Link to article here 


child-and-phone publicdomainpictures.net
Image: publicdomainpictures.net

Leading change

Working across different clinical and non-clinical disciplines, paediatric nurses and a paediatric consultant collaborated with the patient experience team at Walsall Healthcare NHS Trust to lead on the development and implementation of a children’s health smartphone application (App) for staff, patients, their families and carers. This has significantly improved patient, carer and family experience as well as better use of resources locally.

Where to look

The paediatric team identified when shadowing patients on the children’s ward that at times parents and carers expressed worry or confusion due to not having the right information available to them at a time it was needed most. The nurses identified unwarranted variation in the use of information on the Trust’s website, as well as in the knowledge of families as to where to find the information to prepare them for their stay on the ward.

What to change

Feedback was gathered from ward staff caring for patients and their families, as well as from patients and families themselves. This demonstrated that often there was a lack of knowledge of the hospitals processes, which made them feel disempowered, and there were gaps in the information available about hospital visits, procedures and investigations via the resources they were using. Feedback indicated that it was difficult to find information on the Trust’s website, it was not always up-to-date and the website did not work well on different mobile devices. It was identified that patients and families wanted to see information prior to their visit, whilst they were in the hospital and afterwards when discharged home.

The paediatric team identified that a digital application was the most suitable, secure solution to address the unwarranted variation seen in practice and was a cost and resource effective solution, which could be free and easily accessible to patients and families whilst providing information to improve their experience of the department and hospital.

Link to article here

Physical activity for children with chronic disease; a narrative review and practical applications


BMC Pediatrics201919:12


Physical activity (PA) is associated with a diverse range of health benefits. International guidelines suggest that children should be participating in a minimum of 60 min of moderate to vigorous intensity PA per day to achieve these benefits. However, current guidelines are intended for healthy children, and thus may not be applicable to children with a chronic disease. Specifically, the dose of PA and disease specific exercise considerations are not included in these guidelines, leaving such children with few, if any, evidence-based informed suggestions pertaining to PA. Thus, the purpose of this narrative review was to consider current literature in the area of exercise as medicine and provide practical applications for exercise in five prevalent pediatric chronic diseases: respiratory, congenital heart, metabolic, systemic inflammatory/autoimmune, and cancer.


For each disease, we present the pathophysiology of exercise intolerance, summarize the pediatric exercise intervention research, and provide PA suggestions.


Overall, exercise intolerance is prevalent in pediatric chronic disease. PA is important and safe for most children with a chronic disease, however exercise prescription should involve the entire health care team to create an individualized program.


Future research, including a systematic review to create evidence-based guidelines, is needed to better understand the safety and efficacy of exercise among children with chronic disease.

Link to article here