Paediatric Chaplaincy Network Meeting

Spiritual Care for Sick Children and young

people: Good practice in relating to children and young people

Paediatric Chaplaincy Network Meeting

The spiritual needs of sick children and adolescents in a paediatric hospital context:

outcomes and reflections from a participation project

Revd Paul Nash, Revd Kathryn Darby, Dr Sally NashChaplaincy, Birmingham Children’s Hospital, Steelhouse Lane,

Birmingham, B4 6NH.paul.nash@bch.nhs.uk, kathryn.darby@bch.nhs.uk, s.nash@stjohns-

nottm.ac.uk.Birmingham Children’s Hospital and Midlands Centre for Youth

Ministry.

Paediatric Chaplaincy Network Meeting

Birmingham Children’s Hospital•260 beds • 2,500 staff • located in the centre of Great Britain’s second largest city•Birmingham population 2008 - 1.02 million 22% are 0-15 years olds(higher than national average) •multi-faith, multi-cultural context

BCH Participation Project• many of your orgs with have them• different to research, less

regularised but same good principles; consent, open environ.

• inductive and deductive• pilot resources / ideasContext: whole family; whole org.How: 1-1, small groupsWhere: School, wards, clubs, play

centre, patient participation groupsWrite up as case studies and

triangulate to each other and spirituality theory

Try ideas with well CYP groups

Ideas we started with:• Art, music, beads• Journal / scrap book• Play / Godly Play• Stories• Pictures • Blobbys • Activities• Pets as therapy • Remember a time when….• Parents questionnaire• Staff questionnaire

List is endless

Paediatric Chaplaincy Network Meeting

An Action Research Project :• staff, children and young people work together to improve spiritual and religious care

• core activities are reflection, research and action and outcome is

improved practice

• project approved by the relevant hospital authorities

• briefing session for staff and volunteers; developed a feedback form

• voluntary informed ongoing consent• activities took place in an open environment and the parent was present if the child wanted this

• a convenience sample was used consisting of 12 encounters.

Our 6 “Ps”

1. Places2. Parents3. Patient issues4. Participation activities5. Principles and practices 6. Products

Participation activities

• sought to facilitate ways into the inner world, to explore and understand the spiritual self.

• range of resources to use were developed by the team

• team used activities that built on their own strengths and interests where appropriate

Principles and practices of spiritual care for sick children

1) Create spaces for spiritual care to occur and relationships to develop 2) Empowerment is a core underpinning value of spiritual care3) Offering “episodes of spiritual care” reflects the often integrated nature of

assessment and intervention and the element of reciprocity4) Developmental and learning context is important to understand in

choosing activities, resources and language5) Identity may have a heightened significance in sickness6) We need to connect and build on existing spirituality and if appropriate

faith7) Meaning making helps children and young people articulate, identify and

understand their spiritual needs8) Spiritual care occurs within and by a community and can offer windows of

normalization9) Metaphor is a significant tool for spiritual care10) Concrete and visible expressions and reminders of spiritual care are

important

Principles and practices of spiritual care for sick children

1) Create spaces for spiritual care to occur and relationships to develop

•attitude of openness and acceptance •attentive listening, rapport, trust, acceptance•offering choice, autonomy and gaining consent•involves a relationship with the patient and often their family

Joe’s postcard

Joe remembers

Principles and practices of spiritual care for sick children

2) Empowerment is a core underpinning value of spiritual care

• best practice in spiritual care is empowering patients to choose, ask, understand and express

• keep checking that they still want to continue.

Teddy’s stay in hospital

Principles and practices of spiritual care for sick children

3) Offering “episodes of spiritual care”

• reflects the often integrated nature of assessment and intervention and the element of reciprocity

Principles and practices of spiritual care for sick children

4) Developmental and learning context is important to understand in choosing activities, resources and language

• sickness may cause a developmental issues; disability

• potential issues around literacy, language and cultural and religious beliefs.

I can make it too

Principles and practices of spiritual care for sick children

5) Identity may have a heightened significance in sickness

• identity is significant in spiritual care • affirming a positive identity for a child:• names are highly important• the vicarious patient. • engaging with the whole family

Principles and practices of spiritual care for sick children

6) We need to connect and build on existing spirituality and if appropriate faith

• for some spiritual care is more meaningful if religious care

• think what lifts the spirits of the patient and build on this

• prayer may be an integral element of this connecting

• consider giving space for children to pray too

Principles and practices of spiritual care for sick children

7) Meaning making helps children and young people articulate, identify and understand their spiritual needs• show and tell•building on what has gone before• mark significant moments• use mapping or reflection exercises•avoid loading the child with our expectations and assumptions

There is always someone listening….

Jules’ prayer … thank you for all the children that are laid now in this hospital today. Make them better … also those going through worse, and for those who’s getting out. Thank you Lord for everything you did for them. Make them to thank you. Then show them that you exist. Show them that You are there for them, that You’re their Father. Thank you for everything that You did from when I come in till the last day I go away. Thank you, very, very much. Amen.

Principles and practices of spiritual care for sick children

8) Spiritual care occurs within and by a community and can offer windows of normalization• community is a significant concept in spiritual care• hospital is a new community• finding opportunities for patients to be together• windows of normalization. • children care about other children and can be impacted emotionally by them

Making friends

Principles and practices of spiritual care for sick children

9) Metaphor is a significant tool for spiritual care

• examples from the project include using a butterfly image, the story of the lost sheep, blob pictures.

• metaphors have the potential to nurture the child in the longer term

Stories

Principles and practices of spiritual care for sick children

10) Concrete and visible expressions and reminders of spiritual care are important

• reminders facilitate ongoing reflection

• such reminders can be given purposefully or left for children to find themselves

• we leave behind who we are

Products• most helpful was focused activity• useful products include: • art and craft materials • visual stimuli• age and developmental stage appropriate books and stories; • godly play resources; • songs and musical instruments; • toys that can be used in bed; • things that relate to helpful metaphors

ISE: Interpretive Spiritual Encounters

• interpretive spiritual care encounters are core activities – first step in spiritual care plan

• in paediatrics a standard list of questions is not usually appropriate for assessment

Conclusions

• changes occurred in both patient and practitioner experience

• there was a sense of energy and enthusiasm, discovery and surprise within the team indicating a shift in awareness and practice

• bringing resources to the bedside leads to a more child-centred and child-directed contact

• the intended outcome is a change in multi-disciplinary practice

Ongoing Developments

• 2 more days in 2012 trial more resources with other paediatric chaplains etc joining us

• Multi disciplinary meeting (psychology, Play, Youth Work, Nursing and Chaplaincy) to discuss what is distinctive and crossover in our roles and professions in offering spiritual care (Sept ‘12; Feb ‘13)

• Explore wider trialling with the Paediatric Chaplaincy Network (GB&I) from Nov 12

• Integration into daily care offered by BCH Chaplaincy• Triangulate findings with teenage oncology research in the same

subject• More participation days in 2013• Publication and wider distribution 2013 onwards