1. Spiritual Care with Children with Chronic and Progressive Disorders Scottish Muscle Network Annual Conference Paul Nash Senior Chaplain Birmingham Children’s Hospital NHSFT

2. Some of our context NHS Scotland
Spiritual Care is person centred care which
seeks to help people (re)discover hope,
resilience and inner strength in times of illness,
injury, transition and loss.
Spiritual Care is provided by all who work in
health and social care as well as by patients, carers and friends.  The role of specialist spiritual care providers - healthcare chaplains - includes helping to resource, enable and affirm colleagues of different disciplines in their delivery of spiritual care.  Significantly this involves supporting them in reflecting on their own spirituality and that of patients and their carers.
Standards framework for children’s palliative care:
Spiritual support
Every child and family should receive spiritual support to meet their individual needs. This should begin at diagnosis and continue throughout the child’s lifetime, death and during bereavement. P. 5

3. Hypothesis:
We need to articulate what is distinctive about the spiritual care of sick children and young people and with different types of illnesses
Spiritual care is different but overlaps from other types of care by of HCPs
Aspects of spiritual care should be offered by most if not all healthcare professionals
An integrated approach to spiritual care by all relevant staff will enhance the care of our children, young people and our families
Application of professional principles of youth and children’s work will enhance hospital spiritual care

4. Issues in spiritual care….
Varied definitions
Macaronic language: Science meets art
Trauma, distress, pain
Generalist v Specialist Roles
Assessment, intervention: continuous
Universal and personal needs
Benefits of needs and care being addressed
Patient, family and staff
Daily, life threatening, life limited, bereavement care
Why might it be a problem? More varied worldviews of families and staff?

5. Spiritual sky and landscape
Integration and multi disciplinary role
Care plans
Measurement and efficacy
Assessment and intervention
Standards and competencies
Research
Resources
Practices
Needs
Literacy
Wellbeing
Assets and strengths
Pain and distress
Organic definitions
Care

6. Where do we start? What lifts your spirits?
What lifts your spirits when you feel low?
What is life giving to you?
What gives us feelings of self worth, purpose, hope, belonging, wellbeing?
What soothes your heart and hurts your head?
Or vice versa

7. Spiritual play with poorly children

8. Defining spirituality:
Q. Who and what am I? Q. Who and what am I to you?
Connectedness: ourselves, others, the world, potentially the transcendent – beyond ourselves
Meaning making, identity and purpose
Sense of the sacred – awe and mystery

9. Definition Supporting Helping Encouraging Facilitating Referring
Building
Endorsing
Being cared for, loved
Meaning making
Feeling and being connected / not alone
Life giving
That I matter
Sense of sacred / other / awe / wonder

10. Practice: Activities: Conversational questions: Spiritual Play
Mindfulness
Conversational questions:
What lifts, soothes, calms your spirit?
What is important to you in your care today?

11. Make a bracelet for your spiritual care
 Make a bracelet for the things you need, want or feel while you are sick or in hospital.
Green = Peace
Red = that I matter
White = Hope for the future
Pink = Strength
Purple = Faith in God
Brown = Honesty
Blue = Happiness
Orange = to be able to help others
Yellow = I belong
Heart shaped = I am loved/wanted
Why have you put those particular colours on your bracelet? Think about what you already have, what you are able to offer to others and how you might be able to have what you would like. Is there anything that you would like to pray about: to give thanks to God for or ask God to help you with?

12. Objective ISE: Interpretive Spiritual Encounters
interpretive spiritual care encounters are core activities – first step in spiritual care plan
in paediatrics a standard list of questions may not work best for assessment
Empowering and participative
Easier to explore than explain

13. Large scale project – life trees
Aim: to explore things that root us, sustain us, help us grow and
the things we need in our lives to bear fruit
Intervention: creating roots, leaves, fruit trees, colouring
Outcomes: need for love, strength, hope, peace, joy, trust and play
identified. Hopes written on leaves “hope that Danny will get well
and for the family to be reunited and stay together” “strength to
get through this hard time and to all be safe, not in harm”.
Feedback sheet identified 11/11 happier, 9/11 felt safe, 8/11 felt
more friendly, 7/11 spirits lifted, important, stronger inside, proud,
6/11 supported, included, calmer, less bored.

14. Factors for chronic and progressive patients
Different and changing levels of dexterity and ability
Doing with not for
Up and down nature of energy and ability
Normalisation
Solidarity – doing things together, same thing separately
Multi faceted loss mimics grief theory
Wider family and community engagement

15. Objectives: Natural navigation
Spiritual Literacy and competency
Parallel to a medical model
Measuring the mystery
Instinct to intentionality
Generic and specialist care
Wellbeing, care, resilience
Sore to soar
Needs : connect, meaning making
Assets and deficits
Inductive and deductive discernment

16. Conclusion: Sore to soar
There is a sense of energy and
enthusiasm, discovery and surprise in
spiritual play
Normalisation of spiritual care being offered
Equipping MD staff in generic spiritual care
Bringing appropriate resources to the bedside leads to a more child-centred and child-directed contact
Continue research; initial assessment tools, efficacy, case studies etc

17. Centre for Paediatric Spiritual Care
Research and resources
Study Centre with 700+ books, articles and resources
Web base shared resources, blog, newsletter etc
Module March – June 2018
Annual shadowing days

18. Module: Multi disciplinary Spiritual care with sick children and YP
Exploring how multi disciplinary NHS and hospice staff can assess and engage in the spiritual needs and care with sick and dying children and young people
Content includes: Practically exploring principles and good practice of spiritual care with sick children; Exploring and critiquing assessment and intervention tools; Exploring the relationship between a child’s development, their spirituality and their illness, shadowing.
15 credit level 4 or 7
4 days at Birmingham Children’s Hospital: 22 March, 25 April,
17 May, 27 June 2018
Cost: £300 inc resource bag and book
There are only 10 places available
More details from
Assignment (level 7): words Write up a critically analytical case study of a child or young person you have worked with including:
a comprehensive assessment of their spiritual need(s)
identification, delivery of and evaluation of an intervention
sophisticated connections to spirituality and child development theory
your strengths and weaknesses as a spiritual care practitioner

19. BCH working definition of spiritual care
Every child and young person who comes into our care has features, interests, skills, hopes and personality unique to them. Children and young people will value being listened to, taken seriously, feeling connected to others, and being included in social groups and activities when they wish, particularly if they feel a sense of loss, bored or isolated, and given opportunity to make a contribution to others and to society. Staff can contribute to a child’s and young person’s developing sense of their own unique value by empowerment and building and respecting autonomy. We cannot underestimate the importance of building rapport and trust, and taking an interest in the unique person receiving treatment. They may wish to draw upon some recognised religious beliefs or a mixture of several to draw comfort and direction from and staff will be able to support this.

20. definition cont…. Enhanced privacy and the opportunity for social interaction with peers and is highly valued by young people. Providing a positive space is an important part of providing spiritual care for young people. Helping them find a “new normal” may take a number of turns and involve set backs, and re-adapting along the way. We conclude that all this maybe done within the wider family. A definitive cure is sometimes elusive; consequentially, young people may be wrestling with important questions about suffering, identity, sexuality, meaning, life and death. Spiritual care involves helping young people by using interpretive spiritual encounters to discuss the difficult and complex aspects of the journey as well as the more positive points of meaning and connection to be found along the way to mitigate spiritual.

21. How ISE works
Chaplains visit with their own bag of spiritual care activities. The chaplain introduces themselves and offers an activity, usually letting the child choose which one(s) they would like to do. The child is given permission to engage with the activity how they wish including being able to stop at any time. During the activity the chaplain actively listens, watches, and with discernment and permission engages with the child. They invite them to talk about what they have done and why they have done it like that or explore other issues they want to. The chaplain makes an ongoing assessment of spiritual needs based on what is occurring and facilitates discussion around what has been shared and observed. Where appropriate an offer is made to return. Chaplains record what they have done in the patient notes (where protocol) and complete the appropriate record for the department which includes noting future interventions, referrals, concerns and further ISEs to explore.

22. Best practice principles for ISE 1
1 Participation, empowerment and autonomy are core underpinning values of spiritual care
2 We need to create spaces for spiritual care to occur
3 Spiritual care occurs within the context of relationship and within and by community
4 We need to connect and build on existing spirituality and, if appropriate, faith
5 Developmental and learning context is important in choosing activities, resources and language

23. Best practice principles for ISE 2
6 Metaphor can be a significant tool
7 Meaning making helps people articulate, identify and understand their spiritual needs
8 Identity may have a heightened significance in sickness
9 Concrete and visible expressions and reminders of spiritual care are important.
10 Offering ‘episodes of spiritual care’ reflects the often integrated nature of assessment and intervention and the element of reciprocity.

24. Benefits of ISE Spiritual care is easier to explore than explain
Gives clear objective to visit but not prescriptive
In paediatrics a standard list of questions is not usually appropriate for assessment
Aids exploring and discovering bespoke spiritual needs in illness
Easier to build trusting relationships over an activity
Gives patients some autonomy and control
Can be spiritual or religious care or both
Can be used with whoever is with the patient too
Intentionally creates opportunities to engage
Can create a safe space