Assessing and Communicating the Spiritual Needs of Children in Hospital

A new guide for healthcare professionals and chaplains

Alister W Bull

• Publisher: Jessica Kingsley Publishers
• Year: 2016
• ISBN:
  9781784501167
• Topic: Psicologia
• Subtopic: Psicologia dello sviluppo

What is meant by 'spiritual care'? How can we assess and communicate the needs of a child in hospital effectively if we each have conflicting interpretations of 'spiritual'?This book proposes that we use a language of 'connectedness', which can fully express a child's feelings about, and understanding of, their hospital experience, rather than relying on religious or medical language. In doing so, assessments can be made purely on information given by the child and their emotional and spiritual needs can be communicated between professionals using a shared professional language, regardless of their own faith, religion or secular outlook. The book fully explains the concept of connectedness and outlines a practical assessment tool that uses play and storytelling to connect with the child and gather information about their hospital experience, their relationships with others while in the hospital setting, their feelings about their current state and their needs.This book will improve communication between medical practitioners, chaplains and other support services, enabling them to provide the best support for children in their care. It will also be of interest to academics in healthcare, theology and psychology.

CHAPTER 1

Finding Another Way:
Connectedness

Imagine what it might feel like for a child to be in hospital.

The worry, the curiosity, the shock, the boredom, the loneliness, the comfort, the attention, the resignation, the fear, the hope, the anticipation, the play, the trust, the separation and disappointment are just some of the possible feelings that a child may endure when admitted into an acute paediatric setting.

Some of us might guess these from our own professional observations, others of us might draw from our parental experiences and a few of us might even recall our stay when we were admitted as a child to hospital. Others may have honed listening skills which allow us the privilege and responsibility to hear children’s stories and glean what we can. Sometimes we have to depend on a family member or carer’s input depending on the situation before us because our visit may, for example, coincide with a child being sedated.

However, what would it be like if we could do more than guess about a child’s needs but were able to empower even just one child to share in their own words what they were experiencing? Think of the more intentional care that could be offered if we had the repeated opportunity to listen to a child try and make sense of their surroundings and circumstances. Imagine that a child could share, with a sense of safety and reassurance, to such an extent that their openness enabled us to support them. Indeed, think of the impact if a healthcare professional were able to assess a child’s needs and leave at the end of a shift confident that what was shared could be clearly understood by colleagues on a following shift.

If this is to become possible, professionals need to communicate through a common professional language. This language would need to capture the developmental depth of how a child interprets their surroundings – a language which cannot be confused with seeking common ground between a healthcare professional and a patient but rather between professionals. I am not seeking an empathic language that a professional may use interchangeably to find common ground of expression in a therapeutic relationship from one case to the next. It is my aim for a healthcare professional to share with their peers a diagnosis of a patient’s needs while in hospital. This enables the healthcare professional to sit down together with a patient, to observe and listen to how a faith or belief narrative might be used by a patient to try and make sense of their healthcare surroundings, and then communicate their findings to colleagues without the use of the language of faith.

Instead of professionals using the terms ‘spirituality’ and ‘faith’, I offer ‘connectedness’ as a way to explain how people talk about meaning. The outcome is a robust and authentic encounter, with a child sharing information about themselves with a healthcare professional who now has available to them a professional language that offers an objective observation. This captures the encounter for other professionals to sustain a continuity of care and support.

Some might be surprised at this approach when the origins of the research for this book stemmed from healthcare chaplaincy and an author who holds a Christian viewpoint on life. However, this is a tension that is faced by all healthcare professionals who have their own viewpoint but who seek to respect the viewpoint of the patient before their own. The opportunity to make that distinction frees us from an anxiety to address this, by letting our own therapeutic experience of whatever our viewpoint might be to bleed into our professionalism. This means such a relationship can be maintained in a transparent way, whether a carer with religious faith caring for a patient with no faith, or a patient who declares they have faith being cared for by a healthcare worker with no religious belief. The professional in both instances is empowered to describe the care needed to their peers, regardless of each party’s faith or absence of faith.

This book explores further how a child in hospital needs to be understood and how the information gathered, and the manner in which it is done, does not diminish its veracity.

The challenges

The challenge is compounded by the shapers of policy and by the apparent ease with which the word ‘spiritual’ or ‘spirituality’ has pervaded the clinical setting. The urgency to find a way to express our concerns to meet a patient’s, coupled with the currency of ‘spirituality’ to exchange what ‘faith’ once described, creates fundamental problems. Spirituality introduces a language that makes some suspicious, gives academics plenty to argue about and leaves practitioners ambivalent to what it means to both the carer and the patient. The meaning of ‘spirituality’ is left open for both patient and professional. Each is left to their own interpretations about how to translate vague policy into clear professional practice.

My healthcare experience and research have told me that under close scrutiny, the policy-makers and proponents of ‘spirituality’ have not thought it through sufficiently for those who care for children. My place of work admitted it did not know what the ‘spiritual’ needs of children were. Indeed, a survey of staff revealed that those who thought children had such needs were still unsure how to meet them. This was quite a daunting prospect for me in my role as a healthcare chaplain, responsible for spiritual care in a paediatric setting.

This is not an admission of defeat, nor is it to argue that religion or any belief narrative has no place any more, but rather that we need an approach to care that helps a healthcare professional understand better and communicate more clearly how a child processes what they think and even feel about their surroundings. The child’s needs in hospital have never diminished but to capture what they are remains the challenge. The language a patient uses to describe their story to others is their choice; however, the way that a professional relates to their peers about how that story is told is a different matter entirely. While that might be addressed within disciplines, much of paediatrics is multidisciplinary and that is where the issue lies.

An overview of the factors contributing to this professional struggle

It would be an unhelpful development if a professional refused to describe their work in an alternative way to faith and spirituality. In doing so, they would abdicate their responsibility to those who use faith and spirituality to monopolise the experiences and needs of patients by describing them only in such terms. It would diminish any sense of engagement because spirituality is used to describe an experience or need. A common professional language would be a welcomed multidisciplinary approach.

I propose a new way to describe a child’s needs that is relevant in a care setting and is useful for, and meaningful to, professionals. This book will not explore the nurture versus nature discussion but rather draw from insights of child development and the connections a child makes with others. This particularly moves discussion away from the landmark study of Hay and Nye, published in The Spirit of the Child (1998), that worked on the premise of discovering a spiritual DNA they called ‘relational consciousness’. This led them to what they considered to be the unspoilt make-up of a child before the veneer of secular culture corrupted it or disguised it enough so that it was unrecognisable. The journey of this book will look for another way to discover how a child makes sense of their surroundings.

I decided to speak to and play with children who were in hospital to find out just that. Previously, some researchers had asked healthcare professionals for their opinions based on their encounters with children; others had asked questions when the children were in school, and others asked them directly about what they thought of God. I wanted to know directly how a child made sense of their surroundings and what that meant to them. This involved developing a resource that enabled them to share their healthcare story using boards and cards. It worked, and feedback from the children suggested that it was ‘really good fun’.

The insight offered a different focus, moving away from identifying a child’s religion or belief system towards identifying the ways in which they might use that religion or belief system in their current context. The concern is not to discover the innate qualities of children’s spirituality but rather to discover how the qualities of any belief system function in a given context. This is the information healthcare professionals need to discover in order to deliver appropriate care. This is the focus of this book.

While the exercise to define spirituality is as elusive as the wind, my aim is only to attempt to measure some aspects of it; although I do not intend to locate spirituality per se, I will attempt to understand the impact a belief system’s presenting narrative might have on an individual in a particular context. A weather forecast may not be able to predict the outcome of weather systems but it does give some indication of expected impact and allows for the planning of a response. In education, spirituality might be used to refer to a belief system, whereas in social work and healthcare it might relate to person’s state of well-being. In a religious context it might be used to describe experience or transformation. I am seeking to devise another way to talk about children’s ‘spirituality’ in a paediatric setting so that all involved in their care can join in and respond appropriately.

Unlike treating adults, carers cannot ignore the impact of child development and how a child’s view of their surroundings goes through considerable changes. Studies in child development offer a vantage point from which to view such changes, which would otherwise be obscured by using the language of faith and spirituality. We will look at some key child development studies in the next chapter.

CHAPTER 2

Understanding Child Development through Connectedness

Introduction

A healthcare professional who appreciates the complexity of childhood realises they can benefit a great deal by tapping into more than one idea from child development studies. In doing so they gain a deeper insight into how a child understands and describes their experience.

Therefore, I have opted for four childhood developmental studies to explain and respond to a child’s sense of their surroundings. The combination of these studies provides the make-up of a child at any given stage and setting. As children move through developmental stages they manifest increasing capacity to rationalise, relate socially and appreciate their surroundings in different ways. The ideas I draw from originate from the foundational work of Jean Piaget (1896–1980), Erik Erikson (1902–94), Urie Bronfenbrenner (1917–2005) and James W. Fowler (1940–2015). The effect that each theory offers is like a ray of light shining through a diamond, revealing the complexities of how a child might see themselves within the world and how they engage with it. I refer to this as the four dimensions of connectedness.

The purpose of bringing these ideas together is to help a healthcare professional feel more able to understand the child they are caring for. The end result of these combined insights is an idea called ‘connectedness’. I hope that by selecting such a term it helps healthcare professionals to focus more on how a child connects with their surroundings and also how they can connect with a healthcare professional.

Connectedness possesses strong physical imagery which explains its appeal in a variety of settings whether that be technological, sociological, geographical, related to trade, related to child development or psychology, or related to mathematics. For instance, connectedness is used to describe a mathematical concept, such as a topological space, a graph containing related vertices, with different features which work as one to present information in one piece. If the graph were to be broken up, the outcome would then show signs of disconnectedness. Recognising these connections enables the mathematician to identify the nature of the data and interpret its significance. What is common to these fields is that the term is applied by identifying links and considering the significance of them.

If we start to look at how connectedness can be applied, it can be achieved by identifying links between several points, whether between the hospital and a child’s home or the wider community, or the health of their own body and mind. By doing so, we can explore the presence or absence of relationships; the access, or lack of it, to offered activities; the effects of a child’s state of health on their ability to relate to others and themselves; and their engagement with, or disengagement from, the healthcare environment. A child’s sense of connection or disconnection can be identified through the level of impact it has upon the child. Therefore, I would define connectedness as:

the identifying of a link, made by an individual with another person or object, in order for that individual’s construction of meaning to be understood by another or themselves.

This definition enables a healthcare professional to focus more on the links made by a child to describe the perspective of their life. It is necessary to pinpoint these connections so that the healthcare professional can establish a child’s perspective, as defined by their sense of connectedness.

There are four dimensions of connectedness and they can be used to give the insight required to assess the care needed. The dimensions of connectedness are:

•momentum of connectedness

•resilience of connectedness

•awareness of connectedness

•evaluative nature of connectedness.

The momentum of connectedness

What motivates a person’s trust? What drives them to connect? This dimension applies to what Fowler’s Faith Development theory calls the ‘ultimate concern’ (Fowler 1995, p.93). This could be anything in a person’s life but whatever it might be it has such a priority and high level of value that they are prepared to use it or do whatever it takes to support it. In the case of a hospitalised child it is often the desire to get home and is conveyed strongly when a child shares this view. This example illustrates ‘the momentum ...