Centre for Paediatric Spiritual Care blog
Our regular blog will see posts from various members of our spiritual care team or a guest writer. This month, in the first of two posts Kate Fox Robinson, Masters student at the University of Manchester, writes about the five key areas which emerged from her Masters dissertation on ‘Ensuring meaningful spiritual care for children and young people with complex needs and their families throughout palliative care’
Five key areas to ensure meaningful spiritual care for children and young people with complex needs and their families throughout palliative care
This blog links to a corresponding post which provided a summary of how to ensure meaningful spiritual care for children and young people with complex needs and their families throughout palliative care. These were drawn from interviews with 6 participants from different children’s hospices in the UK who had spiritual care as part of their professional role. The findings from these interviews resulted in five key areas: Overcoming Barriers; Areas of Sensitivity/Nuance; Tools to Support Spiritual Care; Adaptability of Spiritual Care; and the Role of the Specialist.
At times professionals need to overcome barriers as they seek to ensure meaningful spiritual care for patients and their families. The common themes were: fear of imposing; staff integration; and priority of management.
It was felt that these barriers needed to be overcome. There is argument that, ‘in refusing to recognise people’s spiritual needs, we are enforcing an anti-spiritual perspective’ (Broad and Morgan 2004). The reality may be better explained by a feeling of uncomfortable-ness, where staff do not feel equipped or confident to make appropriate responses and interventions. Indeed research has found that patients, carers and health professionals ‘seem to find the language of spirituality both unexceptional and helpful’ (Swinton and Pattison, 2010). It is the prerogative of the management of hospices to prioritise training to address this potential deficit in care, to prevent spiritual care being neglected at a time of life when people may need it the most.
Areas of Sensitivity/Nuance
The second key area identified was the need to take a sensitive approach, which considered the nuances of the context - children and young people with complex needs in palliative care. The main themes that came up were: spiritual care for the whole family; children’s spirituality and developmentally appropriate interventions; the role of religion; and spiritual care at the end of life.
These were of critical importance in providing spiritual care for the whole family, both as individual members with differing spiritual beliefs and needs but also upholding the family unit as a whole as they care for one another when they have left the direct care of the hospice. Therefore spiritual care involves bolstering their ability to share spiritual experiences and care for each other. Provision of spiritual care needs to be sensitive in order to be meaningful and that sensitivity to the spirituality of the child and offering developmentally appropriate interventions makes access to relevant spiritual care possible. Sensitivity towards religion and particular associated practices can also greatly ease and enable the spiritual care of those with a particular faith. Spiritual care at the end of life is best received when relationships and spiritual care have been integrated throughout the palliative care journey, rather than being bolted on at the point of bereavement. The challenge at the end of life is remembering, the emphasis for the dying child is less on ‘who am I?’, but ‘whose am I?’ (Gaventa, 2010). The accompanying challenge for those caring for them is to shift from ‘doing to’, to ‘being with’.
Tools to support spiritual care
The third key area identified a number of tools which aided spiritual care: staff training; staff-care and peer support; and role of best fit.
What was felt most important was ensuring that for each individual child and family they had someone available to them who fulfilled the ‘role of best fit’. This may or may not be the chaplain, but would most likely be a staff member who felt equipped to provide some level of spiritual care. Where chaplains were able to train others to provide some level of spiritual care, to families and through peer support, meant there was a greater pool of people who could provide the role of ‘best-fit’. This is essential so each family have people who they can connect with and trust with spiritual matters. At end of life this is especially important as, ‘when we grieve, we don’t turn to everyone, we turn to people we trust most’ (Gaventa, 2010). A sensitivity therefore to who is the person/people of best-fit for each child and family can make a significant difference in determining how far spiritual care offered is meaningful to them.
Adaptability of Spiritual Care
There was a clear recognition that spiritual care needs to be adaptable in order to be meaningful. This requires a flexibility of approach to spiritual care in the following areas: ensuring a care-focused approach; especially an awareness of the meaning of spiritual care for individuals with complex needs; and adopting appropriate language for spiritual care, including spiritual care assessment.
This meant taking a stance of open curiosity about the beliefs, values and concerns of each family, which promotes ‘listening for understanding rather than for agreement or disagreement’ (Barnes et al 2000, cited Baldwin et al 2008). This encompasses the crux of the care-focused approach which is to tend to the inter-related and inter-dependent aspects of each individual. This requires an adaptable approach that isn’t purely based on a cerebral understanding of spirituality. A broadened and deepened spiritual care assessment is valuable, whilst acknowledging that some aspects of care that are beneficial are not always recordable. An awareness of how spiritual care can be experienced by children and young people with complex needs requires multiple layers of expertise which may include the position of just being there which. By doing ‘nothing’, is in fact, in solidarity of helplessness, a meaningful spiritual gesture.
Role of the specialist
The final theme drawn from the findings was the role of a specialist chaplain or spiritual care coordinator. This role has specialism in: holding in tension both the tangible and mysterious aspects of spiritual care; being intentional in thought and action by being an attentive presence; and equipping staff to incorporate spiritual care into their daily practice as well as supporting their spiritual needs.
The guidelines created by Marie Curie (2014), which outline four levels of ‘Spiritual and Religious Care Competencies for Specialist Palliative Care’ are useful. Each level of competency is split into three areas of skills, knowledge and actions. Level one being for all staff and volunteers to have a basic understanding of spiritual need through level four for staff members whose primary responsibility is for the spiritual care of patients, staff and families. The ability to stay with the mystery and be alongside families to ‘absorb some of their grief’ (Domenica, 1997), is one of the demands of the specialist. Gaventa (2010) explains how it can be much more difficult to access appropriate spiritual care at the moment of death if connections have not already been made. In those moments of human fragility where there is established trust, ‘the caregiving relationship itself may serve as a form of spiritual care’ (Callahan, 2013). There is also modelling involved whereby the professional allows space for families to give each other attentive presence. Young et al (2014) describe this, ‘Sometimes all you can do is live in that moment of despair or distress with the person…sometimes demonstrating compassion and empathy is all that we can give. Sometimes the best resources we have are within ourselves’.
This project demonstrates that the main barrier to spiritual care being offered is the lack of recognition of its priority within the wider care-focused approach of children’s hospices. Observations from the findings demonstrate that where spiritual care is recognised two major shifts are enabled. Firstly staff are trained in spiritual care, particularly in carrying out assessments, and they feel equipped to integrate their own spirituality into their role to the appropriate level to care for children and their families as well their peers. Secondly where the specialism of a spiritual care coordinator is taken seriously this enables the development and integration of robust training for staff and implementation of spiritual care assessments which are especially important to explore when the child can offer as much of his or her opinion as possible. This role also provides a presence, which is unhurried and attentive, which draws upon holistic tools to explore meaningful spiritual care for the children and their families. Where these considerations are made and prioritised this maximises the opportunity for each family member to have access to one or more trusted and meaningful relationships, a ‘person of best fit’ who will hold them through the palliative care journey into bereavement. It is this sense of continuity and not being abandoned which makes all the difference. ‘If all hospice team members attend to spirituality, it will expand the choices of parents to find a comfortable source of spiritual care’ (Thayer, 2001).
Baldwin, P.J. McDougall, J. and Evans, J. (2008). An exploration of spirituality, spiritual beliefs and paediatric rehabilitation. Spirituality and Health International. 9, 249-262.
Broad, M. and Morgan, H. (2004). The importance of spirituality for people with learning disabilities. PMLD Link. 16, 9-11.
Callahan, A. M. (2013). A Relational Model for Spiritually-Sensitive Hospice Care. Journal of Social Work in End-of-Life & Palliative Care. 9, 158-179.
Domenica, Frances. (1997). Just My Reflection. Darton, Longman and Todd, London.
Gaventa, W. (2010). Spirituality Issues and Strategies: Crisis and Opportunity. In Friedman, S.L. and Helm, D.T (Eds) End of Life Care for Children and Adults with Intellectual and Developmental Disabilities. American Association on Intellectual and Developmental Disabilities.
Marie Curie Cancer Care. (2010). Spiritual and Religious Care Competencies for Specialist Palliative Care.
Swinton, J. and Pattison, S. (2010). Moving beyond clarity: towards a thin, vague and useful understanding of spirituality in nursing care. Nursing Philosophy. 11, 226-237.
Thayer, P. (2001). Spiritual Care of Children and Parents. In Armstrong–Dailey, A. and Zarbock, S. (Eds) Hospice Care for Children. (2nd Ed) Oxford University Press, pp 172-189.
Young, H. Garrard, B. and Lambe, L. (2014). Bereavement and Loss: Supporting bereaved people with profound and multiple learning disabilities PAMIS Booklet
Full dissertation is available on request
12.04.17 Kate Fox Robinson, Masters student at the University of Manchester, summaires the research she did for her disseration on 'Ensuring meaningful spiritual care for children and young people with complex needs and their families throughout palliative care'.
15.03.17 Two extracts from 'Spiritual Care with Sick Children and Young People' describing spiritual care with a disabled child.
09.02.17 Jodie Cotterrell, a student with Midlands Children and Youth Ministry on placement at Birmingham Children's Hospital, reflects on her time so far as a student.
05.01.17 Read about the staff support module run by the BCH Chaplaincy team, and hear some of the feedback from one of the participants.
08.12.16 Kathy Green, Chaplaincy team leader at Sheffield Children’s Hospital, describes how support was developed for non-clinical staff on an HDU.
03.11.16 Emma Roberts writes about how key biomedical ethical principles can be used as a framework to think about the way that spiritual care is provided.
11.10.16 Linda Wollschlaeger-Fischer writes about spirituality and grief in children and young people.
07.09.16 Emma Roberts and Sally Nash relfect on the CPSC's first year.
13.08.16 Dr Emily Harrop, Consultant in Paediatric Palliative Care at Helen and Douglas House, introduces Ana Todorovic, who has written about her experiences of bereavement.
19.07.16 Lorraine Beddard, a Teenage and Young Adult Clinical Liaison Nurse, writes about supporting a young adult recovering from cancer.
27.06.16 Sally Nash, Researcher at the CPSC, writes about a conference where she and Paul Nash presented a paper.
15.06.16 Emma Roberts, Project Coordinator and Research Assistant at the Centre for Paediatric Spiritual Care, writes about the research background of our sibling support project.
01.06.16 Liz Bryson, a Chaplaincy volunteer, and her family are climbing Mount Kilimanjaro in memory of her daughter Katie. She explains why they have chosen to make this journey.
18.05.16 Christine Williams gives a grandmother's perspective on having a sick child in the family, and gives her insights for those caring for the family.
20.04.16 The opening of a new Peaceful Space at the hospital
06.04.16 Sophie Slater-Evans, a student with Midlands CYM, visited Birmingham Children’s Hospital as part of her course. She reflects on Chaplaincy with sick children
27.03.16 Sally Nash, Director of Research at the CPSC, writes about attending a rare diseases day at Birmingham Children's Hospital
09.03.16 Ambreen Pervez, a Muslim chaplain at Birmingham Children’s Hospital, reflects on spiritual care from an Islamic perspective, and talks about developing activities for Muslim patients.
03.02.16 Parkash Sohal, Sikh Chaplain, and Diane Maybey, Therapeutic Consultant, tell us about their experiences of volunteering with a healthcare charity in India.
14.01.16 Nick Ball, Christian Chaplain at Birmingham Children's Hospital, gives an example of spiritual care with a sick child.
23.12.15 Rachel Hill-Brown, Christian Chaplain at Birmingham Children's Hospital, reflects on Christmas in the hospital.
10.12.15 Emma Roberts, Project Coordinator and Research Assistant at Birmingham Children's Hospital, writes about human rights and spiritual care.
03.12.15 Kathryn Darby, a Chaplain at Birmingham Children's Hospital, writes about lunchtime mindfulness sessions for staff
18.11.15 Alison Bennet, a Physiotherapist at Acorns Children's Hospital, talks about a Spiritual Care Week that was held at the hospice.
5.11.15 Jayne Tomlinson, a Nurse Specialist at Birmingham Children's Hospital, writes about attending a staff self-care retreat day.
27.10.15 Kathryn Darby, Chaplain at Birmingham Children's Hospital - 'Conversations with Teddy'.
14.10.15 Adam Truman, Staff Nurse at Birmingham Children's Hospital, shares his expereince with a patient.
24.09.15 Sally Nash, Director of Research at the Centre for Paediatric Spiritual Care, writes about a message in a bottle spiritual care activity.
17.09.15 Jim Meighan, Healthcare Chaplain at Yorkhill Children's Hospital tells us about Yorkhill's 'Royal Hospital for Sick Teddies'.
10.09.15 Liz Bryson, Spiritual Care volunteer with the Birmingham Children's Hospital Chaplaincy team, gives her thoughts on lament.