Cancer, Chronic Illness and Childhood: An Interview with the Chaplaincy Team at Birmingham Children’s Hospital

As part of our collection on cancer in the medical humanities, we are pleased to post an interview conducted with Rev. Kathryn Darby (Chaplaincy, Birmingham Children’s Hospital), Rev. Paul Nash (Senior Chaplain, Birmingham Children’s Hospital) and Dr Sally Nash (Director, Midlands Centre for Youth Ministry; St John’s College in Nottingham) who provide a rare and stimulating insight into a place that brings young people, a chaplaincy team and health professionals together.

Their reflections explore some crucial and timely issues in the health care services directed to young people, such as illness experience, spirituality, identity, relationships and everyday hopes and fears at a time when NHS services are continuously conforming to structural and financial changes. The Centre for Medical Humanities is grateful for the chaplaincy team’s generosity and look forward to the discussion this provokes.

Correspondence to Rev. Kathryn Darby kathryn.darby@bch.nhs.uk.

Could you briefly talk us through a routine day on a ward with young people diagnosed with cancer?

Routinely, chaplains consult with the list of inpatients before making their visits to wards which provides minimal information about religious affiliation.  This becomes a very rough guide for approaching families and offering our support; some of these families who indicate a religious identity may not initially want chaplaincy support, while others who we incidentally meet on the ward may welcome lengthy contact and support.

Sometimes we receive referrals from other clergy or chaplains, staff or families, and sometimes we simply meet people in our travels and strike up a conversation.  There are many ways into a relationship which can be fleeting or become an involved pastoral contact sustained over a period of months and even years.  We tend to be ready for all sorts of eventualities: a conversation, at times on a deep level and on other occasions, sharing a laugh and a joke, offering prayers or blessing, occasional baptisms, addressing practical concerns, or engaging with young people using post cards, crafts and other spiritual care activities, visiting the classroom on the ward, or being available for staff on the ward.

Could you describe a sense of spirituality without religion? What might young people want from this?

Finding a satisfying or universal definition for spirituality is challenging! An approach we have taken in discussing spiritual care with staff is to offer a list of words and phrases which begin to explore the essence and identity of an individual.   Within chaplaincy we have developed the strap line: “spiritual care is easier to explore than to explain”.  One thing that we can perhaps take for granted is that everyone, young and old, has a world view, and may want to make sense of their changing world as well as explore their own sense of purpose and identity.

It is often with the help of spiritual care activities and creative approaches that we can come alongside a young person in a less threatening and supportive and encouraging way and begin to communicate more fully about life.  As we try to understand and get to know young people, as well as share something of who we are as human beings with them, we will likely find that relationships with others and community are important and that often, worldviews include a sense of God or transcendence.

I suspect that most nurturing practices will find some roots in religion, although a young person may not carry any such label; when religion is important, we have a multi-faith team of chaplains we can call upon. The question about religion may or may not
arise.  What seems to be more important, when meeting with young people who have had the devastating news that they have cancer, is to build trust with them and help to create a safe space for them to explore and express who they are, and to offer understanding, affirmation and acceptance, and if sought, spiritual or religious direction.

What role does spirituality play in the suffering caused by cancer?

In my experience, spirituality is a strong resource in finding ways to process experiences, make sense of what is happening, find meaning and hope, new energy and connection with others.  Spirituality, which may be rooted in religion, can help a person to find resilience in the midst of suffering, comfort and encouragement, and significantly, connection with their community and with their God.

Rituals, which may include traditional religious practices or creative and new approaches, are often valued as ways to deal with suffering and allow for connection with strength or a being beyond ourselves to deal with crisis, loss and spiritual pain.  Spirituality gives young people a wellspring from which to draw new courage, perspective, consolation and hope.  One example of this in our research was piloting the use of sensory care boxes.  This was a fun and creative activity where children and young people were encouraged to decorate a shoe box with images and colours reflecting their own likes and personality, and then put in the box things that gave them comfort and encouragement that appealed to the five senses.  It was wonderful to see these boxes take on unique form and colour as the children got stuck in!  The idea was that during moments when they were feeling a little lonely or sad, they could take out their “comfort box” and enjoy it, and gain a bit more strength and encouragement for their day.

Do you feel cancer creates additional spiritual or emotional needs for children in comparison with other chronic diseases?

That is a very interesting question, and one that we are only beginning to concretely explore in research and conversations we are having within our context.  The way that I would state it presently is: cancer creates some spiritual and emotional needs which are unique and distinctive for children in comparison with other chronic diseases which will have their own distinctive features.  Cancer is still a very scary word in our society and rings particular alarm bells and raises deep fear and anxiety, despite the strides that have been made in developing effective treatments.

In our research, we reflected on the distinctiveness of cancer, where there can be no real assurance of a lasting “new normal”, young people always living with the possibility of relapse, the threat of cancer remaining poised in the air like the Sword of Damocles (see Koocher and O’Malley 1981).  One nurse highlighted the worries for young people attending out patients: do I have something today? Do I have to stay?  Have I packed my pyjamas? Is it going to be like the last time? How bad will it be?” There may be fears about “not coming out again” collaborated by young people interviewed who fear extended hospital admissions and escalating health complications.  Although the young people I have met tend to rise to the challenges of today and get on with the business of fighting their disease, loss and grief may be a particular source of stress for cancer patients (as opposed to those with other chronic illnesses) who may experience many the death of friends with cancer who they have met during their treatment journey.

In your experience, how do you feel young people come to understand cancer through their experience or their diagnosis?

In my experience, young people are often hold a very positive and hopeful attitude as they learn of their diagnosis and enter treatment.  The treatments can be very harsh protocols indeed, and it can be difficult to maintain the positive energy needed to persevere, but often the young people are the ones who give their families the courage to keep going and to keep fighting.  I am reminded of one young person who wore the t-shirt:  “Busy kicking cancer’s ass”.  He was a true inspiration for staff and patients alike with his approach, determination and positive spirit.

Can spirituality help young people suffering with cancer create new meanings or coping strategies out of their illness experience?

Yes, I think that spirituality can help young people create and discern meaning and develop coping strategies – a good example of this is the story of Katie Bryson who battled against cancer for many years (Bryson and Bryson 2012).  Her creative approaches, using ceramics, paint, poetry, imagery, helped her to tell her story and share inner meaning in a profound and generous way for herself, her family and others.  Central to her journey is her story of faith, which is expressed creatively.  While her artwork might be described as a coping strategy, it also became the means of developing and expressing her sense of value, identity, meaning and self confidence, and became part of her unique contribution to the world as she shared this with others.  Her art became an avenue of communication with others, helping her to connect with the wider and sometimes scary world at times when she might have felt otherwise isolated.

Do you feel a ‘community’ is created through the shared experience and expression of cancer amongst young people on the ward?

While important relationships may start with introductions on the ward, within our research, it was observed that the deepening of relationships between young people often happens off the ward:  on trips organised by the Teenage Cancer Trust Unit, and in meetings organised for young people post treatment.  Staff comment that on the trips, bonding happens between young people, and stories are more readily shared; often on the ward, particularly in the initial stages of treatment, staff observe reluctance in young people to mix with others or meet other patients on the ward.  Says one nurse, “The body image is huge … nobody wants to mix; once they actually make the click (e.g. connect with each other) the benefits are huge but without activities, they, though in beds next to each other, want absolutely nothing to do with each other”.  Yet, there is community built on the wards, and important friendships are forged.  The support of staff, ranging from nurses and consultants to chaplains and domestic staff is important in creating community.  In our research (soon to be published with Cancer Nursing Practice) we noted that parents often value the support of other parents and carers and hospital staff as well, as they seek to build community with others.

Young people express their need for community in different ways.  Considering our research, for Ellen, talking to “people who have survived when you haven’t yet” was “really encouraging”.  Ellen describes how “it feels like a long time when you’re in it but when you’re out the other end… it feels really quick which I think is partly due to people I’ve met and opportunities I’ve had that have, I suppose, balanced it out a little bit”.  Laura appreciated the attention of friends and family, bringing things for her to do texting regularly and visiting.

As one staff member stated that some patients enjoy coming into Out Patients because they “start to rely on that social interaction thing” and the environment may even be better than at home, which points to the social economic divergence of patients and related needs.

Do you feel the spiritual or emotional needs of young people are met optimally in the current and controversial cuts to the welfare budget?

In an ideal world, nurses would have time to deliver the necessary medicine and treatment protocols without feeling unduly pressurised, and also have time to pause, listen and attend to the spiritual needs and explorations of the young people in their care.  That aspect of caring for the whole person is often what drew nurses and other clinical staff into their profession in the first place, but increasingly in our staff support training we are hearing how nurses and clinical support staff feel too pressured by the clinical demands to attend to the spiritual and emotional life of.  How closely this relates to cuts to the welfare budget is a crucial question.

In our research we asked young people when they felt the most support during their treatment and their responses were about human warmth and kindness. Before the interview Shelley ‘was feeling a little low’ but shared ‘Now I have more energy, I am lively’. The source of her new energy was ‘talking here – like this – with you [the interviewer]’ (Darby, Nash, and Nash 2014). Shelley also recalled the kindness of the nurse who ‘used to sit holding [Shelley’s] hand’ when she had nightmares and said ‘whenever you need me, just to talk, I will be there for you’ (Nash, Darby, and Nash 2012). Nurses also identified listening to young people, getting to know them and valuing their opinion as elements of developing more meaningful support. They observed that when young people initiated conversations the quality of the contact was often enhanced; but making space for these kinds of initiatives and contacts takes time and a certain inner availability and openness as well as physically being in the room.

Is there a need for improved understandings of spirituality in oncology amongst clinicians in order to enhance patient care? How could this be achieved?

In sharing our questions and research with nurses and clinical staff we often found that there was a great deal of shared understanding and common hopes and aims for the care of young people in the wholeness of who they are. The language that we use can vary and cause hesitation for clinicians who may understand the chaplain’s role in a more narrow sense that only relates to religion.  Therefore there is a need for better communication and training in order to support one another in creating a healthy community where the physical, mental, emotional and spiritual and religious identity of the young people are taken seriously and all considered integral to health and wholeness.

We have been interested and excited to find that there are connections between the training we offer for clinicians in self care, exploring their own spirituality, and the activities we have been developing for understanding and engaging the spiritual needs of young people (Darby, Nash and Nash 2014).  We have found, with adults as well as young people, “spirituality is easier to explore than it is to explain” and have enjoyed leading sessions and away days that create reflective, interactive and supportive spaces for staff to consider their own identity, and we believe that ultimately, finding time for self-care leads to a greater support for others.  We have recently published our findings and will be disseminating this research locally, nationally and internationally (Darby, Nash and Nash 2014).

Are there any challenges in meeting the needs of multi-faith patients, and how do you try to approach this demand as a chaplain?

We feel fortunate that at the Birmingham Children’s Hospital we work within a strong and dynamic multi-faith team of chaplains, paid and voluntary.  We have chaplains representing all of the major world faiths and can usually locate a faith representative from a minority faith background if required.  This is no doubt the advantage of working in the context of a large multi-faith city; meeting the multi-faith needs might be more of an issue in smaller centres.

One of the most wonderful and enriching aspects of working in our context is that there is a great deal of dialogue and openness between people of different faiths which we also model as a department.  It is not uncommon for us to be relating to families which hold different religious identities.  There are times when it is extremely helpful to have a faith representative to help families to feel at ease with aspects of their care or to help provide services and resources that are needed to meet the spiritual and religious needs of that family.

We have been developing resources which are faith specific, such as our virtual rooms for training purposes, our Islamic bereavement books for siblings and for families, and our Sikh bereavement book, and the Held in Hope series of Christian books for families whose child is in hospital (Beech et al 2011), in order to help staff to understand the distinctive needs of different faith communities and develop confidence in offering appropriate support.   All of these resources are available for purchase from our department, and we have begun disseminating these through the Paediatric Chaplaincy Network (PCN) which is our national chaplaincy support network.

References

Beech, V., and the Paediatric Chaplaincy Network. 2011.  Held in Hope Series. Selly Oak, Birmingham: Christian Education Pub.

Bryson, P. H. R., and E. R. Bryson. 2012.  Dying Without Fear: reflections from a young artist’s final journey of cancer.
www.wonderfullydesigned.com

Darby, K., P. Nash, and S. Nash. 2014. Understanding and responding to spiritual and religious needs of young people with cancer. Cancer Nursing Practice, 13:2.

Koocher, G.P., and J.E. O’Malley. 1981. The Damocles Syndrome. London: McGraw-Hill. See also F. Mullen. 1984. Seasons of Survival: reflections of a physician with Cancer. New England Journal of Medicine,  313: 270-273.

Nash, P., K. Darby, and S. Nash. 2012. The spiritual care of sick children: reflections from a pilot participation project. International Journal of Children’s Spirituality, DOl: 10.1080/1364436X.2012.752345.

 

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