Insight Volume 5 Issue 2 by Ty Hafan

sept 2018 vol 5 issue 2

insight

ISSN 2397-799X

inside this issue: welcome

all wales paediatric palliative care network conference ‘the palliative care journey: managing uncertainty’

course, study days and conferences

‘handling difficult news in paediatrics’ workshops

distraction therapy in the hospice setting

sharing best practice in paediatric palliative care

sharing best practice in paediatric palliative care. september 2018 volume 5 issue 2

welcome

Mandy Brimble, Editor, Senior Lecturer in Children & Young People’s Nursing, School of Healthcare Sciences, Cardiff University and Academic Associate, Tŷ Hafan Welcome to our autumn 2018 issue of Insight, published to coincide with the All Wales Managed Clinical Network and Tŷ Hafan Conference. In this issue, Senior Registrar, Dr Tim Warlow provides an overview of the conference for those of you who are unable to join us. There will also be a full conference report in the next issue. Regular readers will be aware that we encourage publications for students who have completed academic studies in the field of Paediatric Palliative Care. In this issue we present one such article by medical student Gwenllian Williams. Her service evaluation of sleep assessment and management at Tŷ Hafan is an indepth exploration of this topic. It provides a real insight into the relevant research literature and current practices, and makes recommendations for future research. Dr Megumi Baba, Consultant in Transitional and Paediatric Palliative Medicine underlines the importance of skilful handling of difficult conversations and provides an overview of workshops which are being held in various parts of Wales. This is entitled ‘Handling Difficult News in Paediatrics’ which is a really topical subject, particularly in the wake of the Charlie Gard and Alfie Evans cases.

Finally, we have a really interesting piece from Tŷ Hafan paediatric palliative care play specialist, Sarah Lee. Sarah demonstrates, via a case study, the importance of distraction therapy in helping children, young people and staff cope with painful procedures. We hope you enjoy reading these pieces and that they are useful to your practice, wherever that may be. As usual we present a list of recent publications that will be of interest to those providing palliative care for children and young people. We have also included details of a number of courses, conferences and study days for those wishing to learn more about this rapidly evolving speciality.

As always, we would love to hear from you. If you would like to write a piece for Insight, please see the guidelines on the back page. There are a range of article options. If you have recently completed a piece of academic work, which you feel is relevant to Insight, why not get in touch? We can talk to you about how it could be adapted for publication. We would really encourage this as a way of getting published for the first time and we are happy to support you with this. You could also comment on an article, share an experience or submit an information request to gain the benefit of other readers’ specialist knowledge. The email address for submission of items is insight@tyhafan.org or phone Carol Killa on 029 2053 2200 if you would like to discuss an idea.

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Editorial panel

Mandy Brimble Editor, Senior Lecturer in Children& Young People’s Nursing, School of Healthcare Sciences, Cardiff University and Academic Associate at Tŷ Hafan

Tracy Jones Assistant Editor, Head of Community Services and Partnerships, Tŷ Hafan

Carol Killa Chair, Director of Care, Tŷ Hafan

Internal reviewers

Hayley Humphries Head of Governance and Quality, Tŷ Hafan

Suzie Howe Professional Development Nurse, Tŷ Hafan

External reviewers

Melda Price

Vera Clement

Lecturer, School of Healthcare Sciences, Cardiff University

Palliative Care Clinical Nurse Specialist for Children and Young People, Cwm Taf Local Health Board

Production representatives Sara Webber, Marketing, Communications and Events General Manager, Tŷ Hafan Henry Dernie, Marketing and Communications Manager, Tŷ Hafan

sharing best practice in paediatric palliative care. september 2018 volume 5 issue 2

all wales paediatric palliative care network conference ‘the palliative care journey: managing uncertainty’ 18th October 2018 Park Inn by Radisson Hotel, Cardiff City Centre Dr Tim Warlow, Senior Registrar, All Wales Paediatric Palliative Care Network

Following the success of last years All Wales Paediatric Palliative Care Network Conference, the team is excited to introduce the much anticipated 2018 conference, taking place this month. This year we will be exploring the palliative care journey from the perspective of the child and family. Hearing from the families themselves, the day will follow their journey from diagnosis through to bereavement. Some of the questions we will be asking include: • When should palliative care be introduced and how do I raise the issue with families? • How do I support families whilst making difficult decisions about their child’s care? • What are the spiritual needs of families at the end of their child’s life? • How do I manage difficult and unfamiliar symptoms at the end-of-life? • How do I approach uncertainty and grief? • How can Tŷ Hafan Children’s Hospice help me to provide holistic care to families?

When working with families of sick children, many of the most challenging issues we face are also the most rewarding when done well. This day aims to unveil those daunting aspects of care, provide ample opportunity for discussion, and hearing from the expert parents and professionals as to how we can serve our families better. The morning will focus on introducing palliative care and decision making, especially relevant in light of recent highprofile media cases. We will consider how we can involve children better in decisions relating to their care, collaborating with families to ensure they feel listened to and valued whilst navigating legal and ethical uncertainties. Next, we will hear from families of children with life-limiting conditions themselves. What were the most challenging times, and what actions of professionals were key to their palliative care journey? What was helpful, what was harmful? We will consider how each professional on their journey played a key role in ensuring excellent holistic palliative care and what we can learn from one another.

Finally, the afternoon will include a series of breakout groups to provide opportunity to really get stuck in exploring an aspect of the palliative care journey that is a priority for you. There will be time to discuss and ask questions in a smaller group setting. Topics include supporting children and families at the end-of-life, managing difficult symptoms, supporting grief, bereavement and spiritual care, and how to support staff including debriefing. Now in its fourth year, we have built on the lessons of previous years, responded to your feedback, and produced a day which promises to be challenging, rewarding, and a fascinating insight into the lives of our patients and families through their own eyes. For those of you who are joining us, we look forward to welcoming you and for those who are unable to attend, we will provide a report in our next issue.

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courses, study days and conferences courses Cardiff University MSc/PGDip/PGCert in Pain Management via Distance Learning/E-Learning. More information available at: http://courses.cardiff.ac.uk/postgraduate/course/ detail/p231.html Palliative Medicine for Health Care Professionals (MSc). More information available at: http://www.cardiff.ac.uk/ study/postgraduate/taught/courses/course/palliativemedicine-for-health-care-professionals-msc-part-time BSc Module: Health Care Professionals: End-of-Life Care. This module is specifically designed for health care professionals working across all care settings. It aims to improve your knowledge and skills in palliative and end-of-life care. More information available at: http://www.cardiff.ac.uk/healthcare-sciences/courses/ courses-for-professionals/clinical-practice-modules/ end-of-life-care-health-care-professionals-hc3127 University of South Wales Paediatric Symptom Management within Palliative Care. This online module explores critical issues arising from contemporary paediatric palliative care, especially in relation to symptom management. Course duration: You will study for ten weeks with our learning materials, followed by an additional six weeks to submit your essay. An induction day will be held to explain how to use our distance learning resources, and depending on class sizes and the location of each student, some face-to-face group teaching may occur. The module is taught by Dr Richard Hain and Sue Dunlop. More information available at: http://www.southwales.ac.uk/ study/subjects/nursing-health-sciences/short-courses/ paediatric-symptom-mgement-within-palliative-ca/ Coventry University Online module: An Introduction to Children and Young People's Palliative and Complex Care. The aim of this module is to provide an introduction to the palliative and complex care needs of children and young people. The module also explores the care pathways of the Association for Children with Life-Threatening or Terminal Conditions (ACT). Furthermore, the module is designed to enable students to develop basic skills for assessing, designing and delivering care packages through the ACT care pathway. In addition, the module will examine the current contemporary trends and future directions that can influence palliative and complex care needs of children and young people. More information available at: http://www.coventry.ac.uk/course-structure/health-andlife-sciences/cpd/an-introduction-to-children-and-youngpeoples-palliative-and-complex-care/

University of Birmingham Principles of paediatric palliative care: This interprofessional module will enable practitioners working within paediatric palliative care to develop and enhance their knowledge and skills of the nature and scope of paediatric palliative care. You will explore and examine a range of subjects including grief and loss, cultural issues and interprofessional working and the impact these have on palliative care. You will also be supported in developing their knowledge of professional, legal and ethical issues in paediatric palliative care. Lectures will be delivered on-line via Adobe Connect webinar with face-to-face lectures on weeks one, four and six. Although not mandatory, you are actively encouraged to attend these three face-to-face sessions. More information available at: https://www.birmingham.ac.uk/postgraduate/courses/ taught/med/pg-modules/principles-of-paediatric-palliativecare.aspx

conferences Hospice UK Conference. 27-28 November 2018 at Telford International Centre. Further details available from https://www.hospiceuk.org/ what-we-offer/courses-conferences-and-learning-events/ conferences/hospice-uk-national-conf The APM’s Supportive and Palliative Care Conference. 21-22 March 2019 at Harrogate Convention Centre. Further details available from https://aspconference.org.uk/

study days 9th APPM Paediatric Palliative Care Study Day. 23 November 2018 at Hilton Birmingham Metropole, NEC, Birmingham. Further details available from https://www. togetherforshortlives.org.uk/professional_event/9th-appmpaediatric-palliative-care-study-day/ Child Bereavement UK - When a child dies – supporting parents and families on 7 November 2018, 9:00am - 5:00pm St Oswald’s Hospice Regent Avenue Gosforth Newcastle upon Tyne NE3 1EE. Further details available at: https:// childbereavementuk.org/for-professionals/our-courses/ when-a-child-dies-supporting-parents-and-families/ Child Bereavement UK - Considering the impact on healthcare professionals when a child dies on 3 December 2018, 9:00am - 5:00pm at Slater and Gordon Offices 2, Cornwall Street 4th Floor, Cornerblock Birmingham B3 2DL. Further information available at: https://childbereavementuk. org/for-professionals/our-courses/considering-the-impacton-healthcare-professionals-when-a-child-dies/

sharing best practice in paediatric palliative care. september 2018 volume 5 issue 2

‘handling difficult news in paediatrics’ workshops Dr Megumi Baba, Consultant in Transitional and Paediatric Palliative Medicine, Cardiff and Vale University Health Board and T ŷ Hafan We have recently seen some adverse cases of decision making around the care of some life-limited children, such as Charlie Gard and Alfie Evans. The decision making was complex, but perhaps not so dissimilar to the sort of decision making we, as professionals caring for the life-limited children, are often involved with, even if it was for some small conversations that we might have with parents as part of the larger process. The importance of good communication skills in handling difficult news goes without saying in the process of such decision-making. Such skills come with training and experience which includes gaining an insight into parents’ perspectives1-3 and having an understanding of the impact your communication approach will have on the subsequent decisions and relationships with the family4-5.. For the professionals working in children’s palliative care, for whom handling difficult conversations with life-limited children and their families forms a significant part of their work, communication skills training is a vital part of our training. However, there are many professionals who are involved in care of life-limited children and their families who may not have had specific training or much experience in handling challenging conversations around diagnosis, prognosis, death and dying. In order to ensure the best possible care from diagnosis to death and beyond, it is important that professionals are equipped with relevant skills, including communication skills. Following the success of the ‘Serious Illness Conversations Programme’ which was run by the adult palliative care specialists to equip non-palliative care colleagues in holding effective conversations with patients with life-limiting conditions, End of Life Care Board has offered to fund similar workshops that are aimed more towards professionals dealing with life-limited children. The workshop called ‘Handling Difficult News in Paediatrics’ has been designed to provide an all day training session comprising of two parts. The first part is general training in handling difficult news, starting with short lectures on the theory and the importance of good communication skills illustrated by case studies, patient stories and interview of parents. This is followed by a breakout session to practice holding difficult conversations by role-play in small groups. Delegates are given some scenarios and roles to act out but they are also encouraged to bring cases that they have had and wished to reflect on and replay to improve their communication. The second part of the day is focused more on advanced care planning. The All Wales Paediatric Advance Care Plan (PAC-Plan) is introduced to the delegates and the process of completing one, followed by breakout session to practice having PAC-Plan discussions with patient and families by role-play. The delegates were provided with a handbook that contained some useful communication tools and information on PAC-Plan as well as an actual document.

The workshops are being held in various parts of Wales and over a two year period (one workshop per LHB per year) to ensure everyone can benefit. In setting up and providing the workshop, Tŷ Hafan has provided a significant input, including administration, teaching and facilitating tasks. Amanda Young is certainly one of the staff in an administrative role who rose to the challenge, playing a vital part in co-ordinating the bookings and putting the course handbooks and delegate information packs together and making sure things run smoothly on the day of the conference. The first workshop was held in Cardiff in April to provide training to those mainly based in Cardiff and Vale UHB, Aneurin Bevan and Powys LHB areas. The workshop was extremely popular and oversubscribed, attended by over 100 delegates on the day. The second one in June was lead by the ABMU team and again had a good attendance by professionals in various roles including health visitors, clinical psychologists, school nurses, play specialists, speech and language therapist and physiotherapist, as well as paediatric nurses and doctors, GPs and students in nursing and medicine. Some Tŷ Hafan staff also attended the workshops as trainers as well as delegates. The feedback received from the delegates was very positive. There will be further workshops each based in Cwm Taf, Hywel Dda and Betsi Cadwaladr LHB later this year and another round of workshops next year. More information can be obtained by emailing education@tyhafan.org. It is hoped that many professionals working with life-limited children their families will benefit from this educational opportunity through the workshops to become more competent and confident in handling difficult conversations. There is also an e-learning module for training in PAC-plan that can be found on ESR if you are working in NHS Wales. Some educational resources on advance care planning are also available in the paediatric section of the Palliative Care Wales Website http://wales.pallcare.info/index. php?p=sections&sid=67

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references 1. Bluebond-Langner M et al. Understanding Parents’ Approaches to Care and Treatment of Children With Cancer When Standard Therapy Has Failed. J Clin Onc 2007. 25;17:2414-2419 2. Zaal-Schuller IH, de Vos MA, Ewals FVPM, van Goudoever JB, Willems DL. End-of-life decision-making for children with severe developmental disabilities: The parental perspective. Res Dev Disabil. 2016 Mar;49–50:235–46. 3. Gillis J. We want everything done. Arch Dis Child 2008 93: 192-193 4. Bluebond-Langner M et al. ‘I have to live with the decisions I make’: laying a foundation for decision making for children with life-limiting conditions and life threatening illness. Arch Dis Child 2017;468-471 5. Hinds PS. “Trying to Be a Good Parent” As Defined By Interviews With Parents Who Made Phase I, Terminal Care, and Resuscitation Decisions for Their Children. J Clin Onc. 2009;27:1579-5985.

sharing best practice in paediatric palliative care. september 2018 volume 5 issue 2

distraction therapy in the hospice setting: the role of the paediatric palliative care play specialist Sarah Lee, Paediatric Palliative Care Play Specialist (Registered Health Care Play Specialist), T ŷ Hafan

introduction

case study

Distraction therapy has long had an essential role in the holistic psychological support of children undergoing treatments and interventions in clinical settings 1. When a child or young person shows discomfort by crying or shouting, it is not only distressing for them, but also parents and caregivers, as well as the staff attempting treatment2..

This work can best be explained via a case study. All names have been changed for confidentiality6 and the family has agreed for their information to be shared here. Simon is a young boy of six years old who has been known to Tŷ Hafan and community nursing services for a number of years. Some of his care is quite invasive and more recently he has required a new invasive intervention which was causing him high levels of distress and discomfort. His family and community nursing team have become adept at managing this procedure for him at home and he trusts them to do so with minimum fuss and impact on his dignity. We wanted to ensure that Simon was supported in the same way whilst staying at the hospice and that his treatment was delivered compassionately.

Distraction therapy is a way of helping a child cope with a painful or difficult procedure. It can also be used if a child is in pain or discomfort. It aims to take the child’s mind off the procedure by concentrating on something else2.. Most hospitals have a play service which includes qualified Hospital Play Specialists, now more widely known as Health Care play specialists3, 4. In 2014, thanks to a grant from Children in Need, Tŷ Hafan was able to create such a role and employ a hospice based Paediatric Palliative Care Play Specialist. This role has been instrumental in delivering a range of therapeutic interventions both in the hospice setting and, when appropriate, in hospital and the community.

how does distraction help? Essentially, distraction helps a child feel more relaxed and better able to cope with receiving care, even when that care is uncomfortable or painful. Distraction can: • Reduce fear and anxiety • Empower the child, the family and staff • Decrease the awareness of pain • Make the next treatment easier5.

As the Tŷ Hafan Palliative Care Play Specialist I was asked if I was able to provide emotional support and distraction to Simon during the procedure, as well as to work alongside the nursing team to ensure the procedure was carried out safely. If a positive outcome could be achieved, this would help Simon build trust and confidence. It would also aid a faster recovery time post treatment. In terms of planning the work, I spent time getting to know Simon’s care needs and details of the treatment. I spoke to the nurses and explained from a play specialism point of view what would be required. This included roles and responsibilities for staff and what would be needed from Simon to ensure his treatment could be delivered effectively and in a timely manner. Attention to these factors would be more likely to result in a positive outcome for Simon and the staff.

In order to achieve this, the following tasks were planned: • To discuss in-depth with carer, on admission, how they complete the procedure at home. By ensuring consistency between settings we can maximise a feeling of reassurance for Simon. • Have a discussion with Simon on admission about what is going to happen pre and post treatment, what is expected of everyone and agree on a little incentive for Simon post treatment. • We agreed there would be a maximum of three members of staff in the room during the treatment itself. This minimises opportunities for Simon to employ delaying tactics, which in turn will reduce his anxiety levels during the treatment. • Each member of staff would have a specific role during the treatment. This ensures that everyone knows what is expected of them and more importantly Simon knows what to expect from staff. • I agreed with Simon that I would hold him safely during the procedure and that he in turn would hold a beloved toy. This replicates how the procedure is carried out at home which provides security and comfort for Simon. • Once treatment is completed, Simon would get lots of praise and staff would be praised in front of Simon for completing the procedure quickly and effectively. This provides a speedy recovery for everyone, positivity and good team building between everyone involved. It is hoped that this will then spill over to the following day’s treatment and so on.

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• As a form of encouragement and a well done to Simon we will make a certificate and give him a small prize for him to keep.

very quickly, and soon returned to his usual happy, chatty self. Everyone made a massive fuss of him, giving him lots of unconditional positive regard.

On the first day of the procedure, I arrived at Tŷ Hafan at 7:00am and went straight to Simon’s room – he was awake and watching his iPad. Again, we had a conversation regarding what was going to happen that morning. Simon showed good understanding and knowledge of what the treatment would entail including staff roles and his role. After this, we carried on with watching the iPad. He was very chatty, happy, laughing, showing me different clips.

The whole procedure, including warning time, took less than 20 minutes which was a very positive outcome, not only for Simon but also for all the staff involved. This showed good communication and understanding of roles and responsibilities between carers, staff and Simon. For Simon, this provided positivity, less distress, faster recovery time, more confidence and, over time, trust in new staff supporting/delivering his treatment during a stay.

I was given a five minute warning by the nurse who was going to complete the treatment. I immediately gave the care team member in the room the same five minute warning, as well as to Simon himself. During this time, we got Simon ready.

Simon quickly reminded me that I needed to make him a certificate and get him a prize which he then showed off proudly. This enabled him to talk about his procedure with other people, which was something he had previously found difficult.

Once we were all ready, Simon did try some delaying tactics but I re-iterated that we needed to get this done and the faster we completed it the faster we could carry on with playing and having fun. I said to Simon: ”You Cwtch Teddy now and I’ll hold…..and go”. Staff nurse then completed the treatment. Simon did shout and make lots of loud noises during the treatment. The care team member and I provided verbal distraction during the treatment.

I did not need to be available for all of the remaining procedures during his stay as both Simon and the staff team were confident they could replicate the environment and steps we had created. I wrote up a step-by-step guide for staff and used the security figure of Simon’s toy to remind him that he could cope with the procedure.

All voices were intentionally calm, controlled and pitched at a reasonable volume. Post treatment, Simon recovered

The remaining treatments were administered without incident and Simon was rewarded with praise and a certificate each time. As a Palliative Care Play Specialist, I am regularly reminded of the amazing strength and resilience of the children, many of whom are subject to distressing and invasive treatments over which they have little control. Being able to involve Simon in planning how the treatment was delivered allowed him an element of control and thus empowered him to feel, at least in part, autonomous7.

conclusion This was another excellent example of effective communication, team work, structure and delivery of the treatment.

references 1. Koller, D & D Goldman, R. (2011). Distraction Techniques for Children Undergoing Procedures: A Critical Review of Pediatric Research. Journal of Pediatric Nursing. 27. 10.1016/j.pedn.2011.08.001. 2. Great Ormond Street Hospital (2011) Distraction Therapy. London. GOSH. [Online] Available at https://www.gosh.nhs.uk/ medical-information-0/procedures-and-treatments/distraction-therapy 3. N HS Health Education England. (2018) Health Careers. [Online] Available at: https://www.healthcareers.nhs.uk/explore-roles/ wider-healthcare-team/roles-wider-healthcare-team/corporate-services/health-play-staff 4. N ational Association of Health Play Specialists (2017) https://www.nahps.org.uk/site/ 5. Complex Care at Home for Children. (2018) Distraction techniques. [Online] Available at: https:// complexcareathomeforchildren.com/prepare-your-child/distraction-techniques/ 6. N ational Association of Health Play Specialists (2017) Hospital Play Specialist – Code of Professional Conduct [Online] Available at: https://www.nahps.org.uk/site/wp-content/uploads/2017/01/HPS-Code-of-Conduct.pdf 7. Grootens – Wiegers, P et al. (2017) Medical decision-making in children and adolescents: developmental and neuroscientific aspects. BMC Pediatrics 17(1):120. doi: 10.1186/s12887-017-0869-x.

sharing best practice in paediatric palliative care. september 2018 volume 5 issue 2

service evaluation of how sleep is assessed and managed in children receiving palliative care in t ŷ hafan Gwenllian Williams, Medical Student, Cardiff University

Introduction Tŷ Hafan provides specialist palliative care for children and young people in Wales, who have life limiting condition1, which can include neurodevelopmental disabilities (NDDs). Tŷ Hafan’s aim is to provide a high standard of care to enrich quality of life (QOL)1. The role of paediatric palliative care (PPC) more widely is also to provide the best QOL, and care involves addressing physical, psychological, social and spiritual needs2.

Semi-structured interviews were also conducted with six members of the care team, including a nurse specialist, lead nurse, two nurses and two health care support workers. The interviews were reviewed and main themes identified. Ethical approval was not necessary.

Studies have found that sleep problems are one of the most common symptoms and a priority of parents whose children receive PPC3-8. Sleep disturbance can profoundly affect QOL for both the child and family9-11, is detrimental physiologically and psychologically12-13 and may worsen unrelieved emotional or physical distress14. Sleep has been identified as a primary responsibility of NDD health services15. Whilst there is an acknowledgment that sleep is important in PPC, literature about sleep quality, assessment and management is lacking. It is important to gain a good understanding in order to provide optimal sleep management and ensure the best possible QOL. Therefore, this service evaluation aimed to explore the current evidence base, evaluate the sleep quality of children in Tŷ Hafan, identify how sleep is assessed and managed in Tŷ Hafan and suggest recommendations for improvement.

• Sleep quality

Methods A literature search was conducted to understand what is currently known about how sleep is assessed and managed in PPC. An advanced search of MEDLINE was used: eighty-two articles were found; all abstracts were assessed and 27 found to be relevant. Other relevant literature found was also reviewed and the literature guided the questionnaire, interview and observation sheet design. Over a two-week period, the questionnaire was administered to evaluate sleep quality. The night care team aimed to complete one questionnaire per child for each night of stay. Additionally, the child’s age, condition/s and any medications, which affect sleep, were noted. The data was analysed using spreadsheet software. The assessment and management of sleep was observed over two night shifts and through spending time at the hospice over a six-week period. Observations were noted.

Results Fifty-one questionnaires were completed from 21 children. Children were aged between 1-16 (mean: 8.5) and had a range of conditions. Table 1 displays the mean sleep duration, sleep latency and number of awakenings for each age group and medication use.

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Table 1: Average sleep duration, sleep latency and number of awakenings and medication use

Age

Number of children/young people in each group

Mean sleep duration in minutes (range)

Mean sleep latency in minutes (range)

Mean number of awakenings (range)

Number on melatonin or chloral hydrate

Toddlers (1-2 years)

643 (25)

27 (50)

2.5 (4)

Pre-schoolers (3-5 years)

548 (45)

90 (90)

0.3 (1)

School aged (6-13 years)

560 (435)

70 (210)

1.48 (0)

Teenagers (14-17 years)

543 (315)

86 (150)

0.3 (2)

A bar chart, see Figure 1, shows the time intervals when awakenings occurred. The pie chart, in Figure 2, illustrates the causes of awakenings, which are further specified in Table 2.

Number of awakenings

Figure 1: Bar chart showing the total number of awakenings, at different time intervals, from questionnaire data 16 14 12 10 8 6 4 2 20:00 - 21:59 22:00 - 23:59

00:00 - 1:59

2:00 - 3:59

4:00 - 5:59

6:00 - 8:00

Total number of awakenings, at different time intervals, from questionnaire data Figure 2: Pie chart illustrating the cause of awakenings from the questionnaire data

Cause of awakenings from the questionnaire data child 55.9% care team interventions 40.7% environment 1.7% other 1.7%

sharing best practice in paediatric palliative care. september 2018 volume 5 issue 2

• Sleep assessment and management From the interviews, all staff expressed that sleep was very important; they commented that sleep ‘impacts on everything’ and ‘everything is compromised’ if a child sleeps poorly. They shared how sleep affects health, mental state, family members, pain, seizures and affects the child’s functioning during the day. Methods staff use to assess how well a child has slept overnight include completing regular checks on the children and documenting their observations. Staff decide if the child has good sleep quality by comparing their sleep that night to their care plan and their previous experience with the child. The ‘Rest and Sleep’ care plan is created by the parents. Staff also use verbal or non-verbal communication to determine how settled a child is. There is no assessment for sleep specifically, unless requested, and the subjectivity of sleep assessment was highlighted. When managing sleep, staff recognise that every child has individual needs and each night can be different. They rely heavily on following the care plan, as they assume it is the child’s norm at home and want to mirror the home arrangement. Fifteen children (71.4%) had the ‘Rest and Sleep’ care plan and 94.7% were followed. Care plans were not followed due to the child being unwell or unavailability of chosen music. Furthermore, there is not always time to read the care plan and it may not be followed due to factors such as: only having one bath, staffing levels and children may be put to bed before they are tired to suit shift handover. From observation, the staff changeover is at 19:30, which is during the bedtime routine for many of the children. The night staff then prioritise knowing medication requirements for the night and preparing the 20:00 medication. Table 3 lists the facilitators and barriers to sleep identified from the interviews. When children wake in the night, most staff explained a mental check list they have, including checking the positioning and pad, for example. However, this appears to be learnt from personal or professional experience and not formally taught and can involve guesswork. All staff felt confident in assessing and managing sleep, however, confidence reduced if they had not looked after the child before or had limited information. No one had received training on assessing and managing sleep.

Discussion When assessing sleep quality, the results can be compared to the National Sleep Foundation’s recommendations16, 17. Toddlers and pre-schoolers slept below the recommended sleep duration and school aged children and teenagers slept within recommendations. Furthermore, toddlers were the only group who had an appropriate sleep latency. For all age groups, 0-1 awakenings >5 minutes indicates good sleep quality; the school aged group and toddler group had a mean over 1 and there is some uncertainty whether that is deemed appropriate 17. The number of children varied in each group, the recommendations were not specific to PPC and awakenings recorded were not all >5 minutes. Overall, sleep quality was variable and there are areas for improvement, for example, decreasing sleep latency. The increased sleep latency could be linked to the environment, which is one aspect of sleep hygiene 10. Many staff highlighted that technology in the bedrooms, including sensory green ‘galaxy’ lights, music, television and tablets are facilitators to sleep and are included on many care plans. However, it is recommended that the room should be totally dark, as exposure to low light levels can inhibit melatonin secretion and interfere with circadian mediated onset of sleep10. Five of the children were given melatonin to aid sleep, despite some having continuing exposure to light. Furthermore, children with NDDs may have heightened sensitivity to sensory stimuli, therefore, it is recommended that the bedroom environment is unexciting10. Noise was highlighted as one of the largest barriers to sleep and caused awakenings, which is unsurprising as noise increases arousal 19. In some ICU environments, noise levels have been significantly reduced by modifying behaviour through an educational program and having a ‘quiet time’ during certain hours 20. Tŷ Hafan could implement a similar approach and introduce further initiatives, such as providing quiet bins and facilities to prepare medication outside the bedrooms. Additionally, the sleep routine, another aspect of sleep hygiene 10, 21, 22, is hard to implement in Tŷ Hafan, due to shift handover, staffing levels and medication prioritisation. Therefore, it is easier for the children to be entertained by technology, rather than a story. However, a positive routine, including a bath, massage and quiet activities improves sleep quality22, 23.

To improve sleep in PPC, behavioural regulation, sleep hygiene and reducing factors which disrupt sleep are first line and the best evidence, however studies are still limited9, 14. Treatment packages for children with NDDs rarely include sleep-hygiene measures, clinicians lack skills and knowledge to implement sleep hygiene principles 10 and standardised assessment tools are lacking in hospital24. Although staff thought that sleep was very important, none had received training and there is no standardised assessment of sleep. Further evidence is needed to establish sleep hygiene principles in PPC and for parents to be educated and supported to implement these at home, which can be transferred to Tŷ Hafan. Child related factors were the most common cause of awakening and many conditions in PPC can cause disrupted sleep25. For example, sleep problems are common in cerebral palsy, however are often under-recognised and under-treated and there is limited literature guiding management26. More understanding is needed on how conditions affect sleep and can be managed; places like Tŷ Hafan are well placed to recognise and manage disrupted sleep, if proper assessments are in place. This service evaluation had several limitations. Firstly, questionnaires were interpreted differently by each care team member and many were incomplete. Therefore, some information was surmised and may have been inaccurate. It is also hard to generalise, as each child has a different condition and individual complex needs, however, there is potential for general principles of sleep to apply9.

Conclusion To conclude, this service evaluation identified that sleep quality is variable in Tŷ Hafan. Staff assessment and management of sleep is subjective and relies heavily on the parent created care plans. Barriers to sleep were identified, such as noise, and recommendations made. Facilitators were also identified, however, there was a discrepancy between evidence and staff perception. Future study is needed to increase understanding of sleep in PPC and education and support provided to professionals and families to assess and manage sleep optimally to improve QOL.

Acknowledgements Thank you to Tŷ Hafan, University Hospital of Wales tertiary PPC team and Dr Warlow for facilitating and supporting this project.

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Table 2: Causes of night time awakenings from the questionnaire and observation data Questionnaire only

Observation only Enviroment: • Bedroom door closing • Parent speaking Care team intervention: • Feeding tube repositioning

Care team intervention: • Medication administration • Pad check • Pad change • Suction • Saturations check

Observation and questionnaire Enviroment: • Saturation machine alert beep • Bin closing • Light on in bedroom to administer intervention e.g. set up oxygen or change over feed

Child: • Cough • Secretions • Wet pad • Agitated • Unsettled • High temperature • Tachypnoea, tachycardia, fever • Cold temperature • Retching • Vomit • Wind/air in colostomy • Bowel motion

Care team intervention: • Repositioning/turning • Night-time feed and flush preparation and administration

Enviroment: • NIPPY alarm • Alarm set off Other: • Nothing obvious

Table 3: Facilitators and barriers to sleep identified in the interviews Facilitators Interview – staff perception

Enviroment: • Quiet • Room allocation depending on child’s sensitivity to noise and light • Dim/dark lighting • Right temperature • Comforter from home • Sensory lights: green ‘galaxy’ projector • Music • Smells: scent diffuser /aromatherapy • Familiar bedding: pressure mattress, bed, bedding • Television • Tablet Activities: • Bath • Hydrotherapy pool • Story • Cooling down/ relaxing activities • Daily activities and interactions

Care delivery: • Following the care plan • Assessment through window • Medication preparation outside room • Turning/repositioning • Maintaining normal routine • Maintaining comfort e.g. dry pad • Time for routine, not rushed • Agreeing and communicating bedtime

Barriers Enviroment: • Noise - Machines e.g. oxygen - Machine alerts/beeps e.g. sats - Loud children – screaming - Staff talking after handover and during the night - Siblings - Bedroom doors - Parents - Wind/rain - Rain on roof blinds - Air conditioning - Bin closing - Taps in room - Bedroom medication cupboards - Vinyl floor - Bed sides - Raising/lowering bed - Staff sound monitoring system • Temperature - Extremes of warm or cold • Light - Green light - Lights on for medications

• Unfamiliar setting - Noise - Bedding - People - Routine Child: • Unsettled • Spasms • Pain • Discomfort • Itch • Sickness Activities: • Disrupted day and night routine • Only one bath working Care team interventions: • Feeds, flush • Positioning • Medication • Regular checks Staff: • Low staff levels – unable to follow routine e.g. must wait for another team member to be free to put child to bed. • Not recognising that the child is tired

sharing best practice in paediatric palliative care. september 2018 volume 5 issue 2

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15. Janssens A, et al. (2014). Health outcomes for children with neurodisability: what do professionals regard as primary targets?. Archives of Disease in Childhood. 99(10), pp.927-32. 16. Hirshkowitz M, et al. (2015). National Sleep Foundation’s updated sleep duration recommendations. Sleep Health: Journal of the National Sleep Foundation. 1(4), pp.233-43. 17. Ohayon M, et al. (2017) National Sleep Foundation's sleep quality recommendations: first report. Sleep Health: Journal of the National Sleep Foundation. 3(1), pp. 6-19. 18. Stringer J, Donald G. (2011) Aromasticks in cancer care: an innovation not to be sniffed at. Complementary Therapies in Clinical Practice. 17(2), pp. 116-21. 19. Irish LA, et al. (2015) The role of sleep hygiene in promoting public health: A review of empirical evidence. Sleep Medicine Reviews. 22, pp.23-36. 20. Xie H, et al (2009). Clinical review: The impact of noise on patients' sleep and the effectiveness of noise reduction strategies in intensive care units. Critical Care. 13(2), pp.208. 21. Galland BC, Mitchell EA. (2010) Helping children sleep. Archives of Disease in Childhood. 95(10), pp. 850-3. 22. Halal CS, Nunes ML. (2014) Education in children's sleep hygiene: which approaches are effective? A systematic review. Jornal de Pediatria. 90(5), pp. 449-56. 23. Mindell JA, et al. (2009) A nightly bedtime routine: impact on sleep in young children and maternal mood. Sleep. 32(5), pp. 599-606. 24. Ye L, et al. (2013) How do clinicians assess, communicate about, and manage patient sleep in the hospital?. Journal of Nursing Administration. 43(6), pp. 342-7.

11. Tietze AL, et al. (2014) Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep. Developmental Medicine & Child Neurology. 56(12), pp.118793.

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26. Fitzgerald DA, et al (2009) Assessing and managing lung disease and sleep disordered breathing in children with cerebral palsy. Paediatric Respiratory Reviews. 10(1), pp.18-24.

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management of fatigue and dyspnea in pediatric palliative care. Pediatric Clinics. 54(5), pp. 735-56.

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publications of interest Bally, J et al. (2018) A Metasynthesis: Uncovering what is known about the experiences of families with children who have life limiting and life threatening illness. Journal of Pediatric Nursing, 38, pp. 88-98. Courtney, E. et al. 2018. Mothers perspectives on the experience and impact of caring for their child with a lifelimiting neurodevelopmental disability. Child: Care Health and Development 44(5), pp. 704 -710. Davies, J et al. (2018) Life then, life interrupted, life reclaimed: The fluctuation of agency in teenagers and young adults with cancer. European Journal of Oncology Nursing, 36, pp. 48-55. Dean, E (2018) Palliative and end of life care can be a rewarding choice. Nursing Children and Young People online. Available at https://rcni.com/nursing-children-andyoung-people/careers/my-job/palliative-and-end-of-lifecare-can-be-a-rewarding-choice-137376 Downing, J et al. (2018) Paediatric Palliative Care in Resource Poor Countries. Children (Basel), 5 (2): 27. Eskola, K et al. (2017) Maintaining family life balance while facing a child’s imminent death- A mixed methods study. Journal of Advanced Nursing, 73 (10), pp. 2462-2472. Kase, S et al. (2018) A cross-section pilot study of compassion fatigue, burnout and compassion satisfaction in pediatric palliative care providers in the United States. Palliative and Supportive Care, 1-7. https://doi.org/10.1017/ S1478951517001237 Knighting, K et al. (2018) Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices. Journal of Advanced Nursing doi:10.1111/jan.13702. Epub ahead of print

Koch, K & Jones, B (2018) Supporting Parent Caregivers of children with Life-Limiting Illness. Children (Basel) 5 (7), pp. 85. Nafratilova, M. et al. (2018) Still hoping for a miracle: Parents’ experiences in caring for their child with cancer under palliative care. Indian Journal of Palliative Care, 24 (2), pp. 127-130. Mariyana, R. et al. (2018) Parents’ voice in managing the pain of children with cancer during palliative care. Indian Journal of Palliative Care, 24 (2), pp. 156 – 161. Peake, J (2018) Research barriers in children and young people with life-limiting conditions: a survey. BMJ Supportive and Palliative Care doi:10.1136/bmjspcare-2018-001521 Epub ahead of print. Shitaya, S et al. (2018) How Japanese nurses participate in decision making: Infants with congenital life-threatening conditions, International Journal of Nursing Practice, 24, art.no. e12652. Thienprayoon, R et al. (2018) Perceptions of the Pediatric Hospice Experience among English and Spanish Speaking Families. Journal of Palliative Medicine, 19 (1), pp. 30-41. Together for Short Lives. 2018. Together for the 49,000+: Together for Short Lives Strategy 2018-2023. Bristol. Together for Short Lives. [Online] Available at: http://www. togetherforshortlives.org.uk/wp-content/uploads/2018/03/ TfSL-Strategy-2018-2023-A4-Landscape-FINAL.pdf Together for Short Lives. 2018. Together for Short Lives’ family life and perceptions report. Hidden Lives: tackling the social exclusion of families caring for a seriously ill child. Bristol. Together for Short Lives. [Online] Available at: https://www.togetherforshortlives.org.uk/wp-content/ uploads/2018/03/180312-Report-on-Family-Surveyand-Misconceptions

would you like to submit an article? The primary function of Insight is to share best practice in paediatric palliative care. Although Tŷ Hafan publishes the journal, our aim is to provide a collaborative platform for all those working in this field. Therefore, your contributions are both welcomed and valued. All articles should be submitted electronically to Carol Killa, Chair – Director of Care, Tŷ Hafan to insight@tyhafan.org. Submissions will be scrutinised by the Editorial Board who may request changes or for the article to be rewritten. The Editorial Team may reject an article, or hold the article on file for a subsequent edition. Articles can be submitted by a single author or co-written. Submissions should be written in Arial 12 and submitted as a Word document. Referencing style is the footnote numbered system. Articles that include details of children and families must be anonymised. Submitted articles may fall under one of the following categories: quality improvement articles (approximately 300-500 words) In this type of article the author wishes to highlight a new or current service or intervention which reflects the principles of children’s palliative care. The article must give a rationale for the service or intervention based on evidence from policy, research or a specialist body of knowledge.

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debate (approximately 500-700 words) This article is intended to create debate amongst fellow professionals on a palliative care topic which divides and creates multiple opinions. The article may be contentious and a current ‘hot potato’ as it were. The article will be heavily based on available evidence to support the many arguments, and will actively seek the views of the target audience. reflection (approximately 300-700 words) This article is intended to highlight an analysis of a particular topic of relevance to children’s palliative care. It may be current or historical. The word count allowances are an approximate guide, longer or shorter pieces will be considered.

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