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Children’s Palliative Care Education and TrainingUnited Kingdom and IrelandEducation Standard FrameworkChildren’s Palliative Care Education and TrainingUK aNd Ireland Action Group

Edition1st edition 2020, for review 2025

CPCET UK and Ireland Action Group membersJulie BaylissTara Kerr-ElliottAntonia BeringerGilda DavisHilary CassLizzie ChambersAbi WarrenDoris CorkinLiz CrightonJulia DowningHelena DunbarSue DunlopCPCET Education Standard FrameworkNicola FieldingNicki FitzmauriceSuzie GannonJo GriffithsAnne HarrisSara KirbyCari MalcolmLinda MaynardRenee McCullochMaria McGillJayne GrantDebbie McGirrKatrina McNamaraLis MeatesTendayi MoyoSue NeilsonJayne PriceClaire QuinnDuncan RandallRachel SetterKatie StevensJanet SutherlandKatie Warburton3v1.0.07.20

IntroductionThe UK All-Party Parliament Group on children who need palliativecare1 recommended that the guidance and competencies, proposedby numerous bodies and organisation, concerning children’s palliativecare needed to be aligned. In response to this recommendation theneed for a revised competency framework in the UK2 was recognisedas despite recommendations1 - 4 no educational framework has beenestablished across UK and Ireland.Members comprised champions from Institutes of Higher Education,clinical practice and 3rd sector allied organisations. We would liketo extend our thanks to Professor Myra Bluebond-Langner, TrueColours Chair in Palliative Care for Children and Young People, forchairing the inaugural meeting discussion group and her ongoinginvolvement.A graphic illustration of the inaugural meeting presents the keyThe Children’s Palliative Care Education and Training United themes discussed (Figure 1). During a series of four meetings theKingdom and Ireland Action Group was formed in 2019 with the aim education standard framework and self-audit tool was developed forof agreeing core principles of practice and standardising children’s use across all professional groups.palliative care learning.CPCET Education Standard Framework4v1.0.07.20

Figure 1 Graphic illustration of inaugural meeting discussion5The framework is not intended to regulate or limit educationprogrammes, but to provide a framework which we hopeeducationalists will want to use to coordinate and quality assuretheir programmes.community public health issue. The Universal level highlights whateveryone working in institutions or facilities providing care andsupport to children who have palliative care needs and their carersshould know. Core was designed to provide education standard to beused by various professional groups who work directly with childrenwith palliative and end of life care needs. This group may also workwith children with various other health/ social and educational needs,but who regularly deliver direct care to children with palliative careneeds. Finally, the Specialist level was designed to help those whosemain work is the design, delivery and evaluation of children’s palliativeand end of life care and who advise others on delivering care to thesechildren and their carers (families).The framework extends across four levels: Public Health Universal Core Specialist.The Public Health level addresses children’s palliative care as aCPCET Education Standard Framework5v1.0.07.20

that the pyramid has to be built on a secure foundation, in this case asound institutional commitment to children’s palliative care with welldeveloped understanding and policies that are evident throughoutthe organisation.These four levels can be seen as stand-alone or as incrementalstages. People might require one or two levels for their role andwork, or they may require all four if a specialist children’s palliativecare practitioner. The levels are designed to be accessed by peoplefrom different professional backgrounds, or none.We welcome feedback on the standards and are planning anevaluation of the framework and self-audit tool. Please emailfeedback to s.j.neilson@bham.ac.ukEducators are encouraged to design their courses using Gabbayet al. 20146 pyramid approach. This approach proposes that toimprove practice, technical and soft skills have to be combined withlearning as a team, each as a side of a pyramid, where each sidehas to be developed at the same time to build the pyramid. Thatover emphasis on one aspect will hinder the development of thepyramid, and the learning. Gabbay and his colleagues also point outSue Neilson, Katrina McNamara, Duncan RandallJuly 2020References1. Cooper, J. (2018). End of life care: strengthening choice. An inquiry report by the All-Party Parliamentary Group (APPG) for ChildrenWho Need Palliative Care. Available at t/uploads/2018/10/Pol Res 181019APPG Children Who Need Palliative Care inquiry report.pdf2. Downing, J., Ling, J., Benini, F., Payne, S., & Papadatou, D. (2013). Core competencies for education in Paediatric Palliative Care.Milano, Italia: European Association for Palliative Care.3. Department of Health 2016 Providing high quality palliative care for our children. A strategy for children’s palliative and end of life care2016-26. Available from: -childrens-palliative-and-end-life-care.PDF4. European Association for Palliative Care (2007). IMPaCCT: standards for paediatric palliative care in Europe. Eur Jour Pall Car, 14(3),109-145. Brodrick, L. (2019). Children’s Palliative Care Education and Training Inaugural Steering Group Meeting: 10.1.19. http://www.thinkbigpicture.co.uk6. Gabbay, J., Le May, A., Connell, C., & Klein, J. H. (2014). Skilled for improvement? Learning communities and the skills needed toimprove care: An evaluative service development. London: Health Foundation.CPCET Education Standard Framework6v1.0.07.20

CONTENTSCPCET UK and Ireland Action Group members .Introduction .References .How to use the Educational Standard Framework .Public Health .Universal .Core .Specialist .Appendix 1: CPCET Standard and Level Summary .Appendix 2: .CPCET Learning Outcome Summary .Resources .CPCET Education Standard Framework7346810121417202225v1.0.07.20

Children’s Palliative Care Education and Training United Kingdom and IrelandEducation Standard FrameworkHow to use the Education Standard FrameworkThere are four sections to the Framework depicting the expectedlevels of developing knowledge and skills: Public Health, Universal,Core and Specialist. We expect people to either access a singlelevel, or to use a range of levels each building understanding skillsand exploring values. The standards can be seen as stand-alonelevels or as incremental so that a specialist might be expected tohave met all the learning outcomes across all of the levels. Weexpect programme leaders to assess and verify participants havemet the learning outcomes of prior levels (For example programmeleaders for Core programs will verify students can demonstrate howthey meet learning outcomes for Public Health and Universal levels)Programmes of learning should reflect Gabbay et al. 2014 1pyramidapproach and include technical skills (perhaps in Identifying andmanaging symptoms), soft skills of values and attitudes (as seen inSustaining self and well-being of others) and learning together (as inCommunicating effectively and Providing multi-disciplinary holisticcare in any care setting) in the belief that this approach will provideeffective learning to improve quality of care.1 Gabbay, J., Le May, A., Connell, C., & Klein, J. H. (2014). Skilled for improvement? Learning communities and the skills needed to improve care: An evaluative servicedevelopment. London: Health Foundation.CPCET Education Standard Framework8v1.0.07.20

Suggested local indicativecontent exemplarsSuggested assessmentexemplarsLevelLevel outcomesEvidenceEvidenceEvidenceThe Quality Assurance Agency forHigher Education ions-and-credit-frameworksThe 4 learning outcomes have beendeveloped from the identified Sourcesof information as detailed on eachlevel.QAA UK Quality Code for HigherEducation: eand-guidance/assessmentScottish Credit and QualificationsFramework (SCQF)https://scqf.org.uk/Blooms TaxonomyBuilding knowledge and nthesisEvaluationQuality and Qualifications esAnderson, L.W. & Krathwohl, D.R.(2001). A taxonomy for teaching,learning, and assessing: A revisionof Bloom’s taxonomy of educationalobjectives. New York, NY: Longman.Bloom, B.S. (1956). Taxonomyof educational objectives: Theclassification of educational goals.New York, NY: Longmans, Green.NB Throughout this document Child or Children refers to children and young people aged 0 - 18 years (including prenatal). Carers refers to the child’s main carer, often parentsor legal guardian.CPCET Education Standard Framework9v1.0.07.20

Children’s Palliative Care Education and Training United Kingdom and IrelandEducation Standard FrameworkPUBLIC HEALTHIn this level children’s palliative care as a public health issue will be addressed. Aspects such as social attitude to death and dying in childhood and bereavementfollowing a child death are explored. This would be expected to be across education, health and social care and involve other stakeholder groups concerned withchildren, their experience of childhood, learning and support of children, siblings, parents and other family members as well as communities affected by childdeath (e.g. school communities).LevelCertificateQAA EnglandWales and NIreland (FHEQ):2-3CertificateScotland SCQF:7Ireland QQI:6Learning OutcomeSuggested local indicative content exemplars1. Communicating effectively, for example:1. Communicating effectively Verbal and non-verbal communication relating to1.1 Gain an appreciation of both ‘helpful’ and ‘unhelpful’palliative care.patterns of communication with children and their Cultural patterns of communication incarers who are living with life-limiting/lifecommunities around palliative and bereavementthreatening conditions and those who havepractices.experienced a bereavement. Introduction to communication aids and2. Working with others in and across various settingstechnologies to facilitate communication for2.1 Discuss how to build and sustain compassionatechildren and their carers.communities and how all children can be included Effects of emotion, trauma and stress on verbalto experience a childhood alongside their peers.and non-verbal communication in palliative care.SuggestedassessmentexemplarsOn-line MCQ withfeedback.Reflection on a personalexperience.Arts-based reflection oflearning e.g. poster orpoem.Group presentation.3. Identifying and managing symptoms2. Working with others in and across various3.1 Describe common reactions to health and wellness,settings, for example:stress and grieving and set out potential Ethos of public health / what is public health /interventions/ strategies.health in palliative care. What being healthy means in palliative care /3.2 Reflect on own beliefs, attitudes and understandinghealth promotion.of personal and community responses to death in How society considers children who are palliative.childhood. What are compassionate communities? Diversity in children’s palliative care and issues of4. Sustaining self-care and supporting the wellaccess.being of others Health inequalities and effect on palliative care.4.1 Develop an awareness of and reflect on your ownbeliefs, attitudes, and values relating to child deathin their communities.CPCET Education Standard Framework10v1.0.07.20

LevelLearning OutcomeSuggested local indicative content exemplarsSuggestedassessmentexemplars3. Identifying and managing symptoms, forexamples: Introduction to palliative care: what it is and why itmatters, why children die. What is death? Explore how we explain death to ourselves,where our stories come from, which stories weprefer. Raising awareness of most common symptomsand reactions in children, carers andcommunities.4. Sustaining self-care and supporting the wellbeing of others, for example: Self-care: basic mental health / resilience /copingstrategies. How people in communities’ support each other. Cultural self-care practices. Remembrance and connection to deceased. Cultural bereavement practices.Sources of evidence 1, 2, 3, 4 and guidance 1,2,3,4,5,6CPCET Education Standard Framework11v1.0.07.20

Children’s Palliative Care Education and Training United Kingdom and IrelandEducation Standard FrameworkUNIVERSALIn this level the needs will be addressed of all people working in institutions or facilities which provide care and support to children and their carers. It addresseswhat any person working in such environments is likely to need to understand about children’s palliative care. This includes clinical and non-clinical staff. Wherechildren’s palliative care is everyone in the workplaces business.LevelCertificateQAA EnglandWales and NIreland (FHEQ):2-4CertificateScotland SCQF:7Ireland QQI:6Learning OutcomeSuggested local indicative content exemplars1. Communicating effectively, for example: Self-awareness of patterns of verbal and nonverbal communication and effect on children andcarers/ professionals in palliative care. Recognising patterns of distress communication2. Working with others in and across various settingsincluding affective domain.2.2 Discuss principles of safeguarding children with Use of communication aids and technologies topalliative care needs.facilitate communication for children and theircarers.2.3 Identify own organisations policies and practiceswhich support, facilitate and sustain palliative and2. Working with others in and across variousend of life care for children and their carerssettings, for example: Specific issues of safeguarding children receiving3. Identifying and managing symptomspalliative care and vulnerable adults.3.3 Describe common reactions and mental health Own institutions policies and procedures thatissues and strategies to support wellbeing forsupport palliative care.children and their carers who are living with life Vision, aims and objectives/ performancelimiting/life-threatening conditions and the bereaved.indicators of own institution that relate tochildren’s palliative care.3.4 Recognise common symptoms that children How organisations and institutions sustain andand their carers who are living with life-limiting/develop bereavement practices and services.life-threatening conditions and the bereaved mightexperience and set out potential interventions.1. Communicating effectively1.2 Identify positive cultures of communication andapproaches to use when communicating withpeople who are distressed or grieving.CPCET Education Standard Framework12SuggestedassessmentexemplarsOn-line MCQ withfeedback.Group presentation.Arts-based reflection oflearning e.g. poster orpoem.v1.0.07.20

LevelLearning Outcome4. Sustaining self-care and supporting the wellbeing of others4.2 Explore strategies designed to manage stress andpromote coping and wellbeing for self.4.3 Identify how own behaviour and practices influenceothers who are distressed and or grieving.Suggested local indicative content exemplarsSuggestedassessmentexemplars3. Identifying and managing symptoms, forexamples: Awareness of referral routes and resources. Introduction to common physical symptoms. Introduction to common mental health issues andreactions in both children and carers living withpalliative care needs. Ability to promote a positive therapeuticenvironment. Awareness of common bereavement reactionsand referral routes and resources. Identify persistent complex or prolonged reactionsto bereavements. Identifying resources and referral routes for endof life emergencies.4. Sustaining self-care and supporting the wellbeing of others, for example: How we care for ourselves, resilience, emotionalfatigue, burnout. Role of care givers at end of life/after death. Child and family centred care, professionalboundaries and therapeutic relationships. Models of grief and bereavement theory. Understanding differences in and betweenreligious and cultural communities. Awareness of spirituality in self and others.Sources of evidence 1, 2, 3, 4 and guidance 7,8,9,10,11CPCET Education Standard Framework13v1.0.07.20

Children’s Palliative Care Education and Training United Kingdom and IrelandEducation Standard FrameworkCOREIn this level the focus will be on the learning for people who deliver care to children and their carers. It includes everyone who delivers care to children ineducation, social and health care who might encounter a child living with a life limiting/threatening condition and or the child’s carers (family and communities).The core programmes for sectors of health, education and social care might be different to address the needs of children accessing these types of care. Inhealthcare this level should include care of the dying child and their carers as well as supporting people with loss and bereavement following a child’s death.LevelCertificateQAA EnglandWales and NIreland (FHEQ):4-6CertificateScotland SCQF:8-9Ireland QQI:7-8Learning OutcomeSuggested local indicative content exemplars1. Communicating effectively1.3 Develop insight into positive cultures and patternsof communication when delivering “bad orunwanted” news/information.1. Communicating effectively, for example: Breaking bad news, difficult conversationsframeworks and strategies. Self-awareness of verbal and non-verbalcommunication during difficult conversations/1.4 Discuss the design, delivery and evaluation ofbreaking bad news.play for children living with life-limiting/life Use of communication aids and technologies tothreatening conditions.facilitate complex and difficult conversations withchildren and their carers about palliative and end2. Working with others in and across various settingsof life care needs.2.4 Analyse the practice and approaches to identifying Play needs for children living with palliative andpalliative and end of life care needs of children andend of life care needs.their carers. Importance of play and distraction as acommunication aid.2.5 Identify and reflect on your own role within the teamdelivering palliative and end of life care.2. Working with others in and across varioussettin

Anne Harris Sara Kirby Cari Malcolm Linda Maynard Renee McCulloch Maria McGill Jayne Grant Debbie McGirr Katrina McNamara Lis Meates Tendayi Moyo Sue Neilson Jayne Price Claire Quinn Duncan Randall Rachel Setter Katie Stevens Janet Sutherland Katie Warburton CPCet uK and ireland aCtion grouP members. CPCET Education Standard Framework 4 v1.0.07.20 The UK All-Party Parliament Group on children .

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