Assessing the Spiritual Needs of Long-Term Paediatric Patients and Identifying Chaplaincy Interventions Which Address Those Needs

Abstract

In order to offer holistic, patient-centred care, attention needs to be paid to spiritual needs. For long-term paediatric patients, this need can be crucial as they may be facing a range of challenges, including life-limiting or life-changing illnesses. This article is based on two pieces of case study research. The first developed a phenomenological definition of spirituality drawing on both the literature and thirty-six case studies of oncology patients where interpretive spiritual encounters (ISEs) were used to identify spiritual needs. The spiritual needs identified were meaning-making, transcendence, connectedness, security, hope, and significance. A challenge for chaplains is then to identify interventions which can respond to the spiritual needs assessed; examples are offered demonstrating this. The second piece of case study research draws on existing taxonomy research in which thirteen paediatric case studies were analysed for practice-based methods of responding to spiritual needs. This offers the possibility of a common language to describe the chaplain’s response to identified spiritual needs, which informs the interventions chosen.

1. Introduction and Article Methodology

Understanding spirituality and spiritual care as integral to healthcare has long been affirmed (Puchalski 2001; Harris 2021; Peng-Keller 2024). This article is a synthesis of two separate spiritual care-oriented case study projects which were undertaken at different times. The first involved one of the authors, an experienced, registered paediatric chaplain (author), analysing her own chaplaincy practice in offering spiritual care to long-term patients (and at times their families) at a children’s hospital. This was part of an academic piece of research which involved developing a phenomenological definition of spirituality (see Section 2.1) from the literature and from her spiritual care encounters with thirty-six patients. Out of this, six key spiritual needs were identified, and their frequency in the thirty-six cases was analysed.

The second project involved the other two authors (author and author) and built on a previous piece of research they had undertaken in developing a paediatric-oriented taxonomy of spiritual care encounters (Nash et al. 2019) from a taxonomy developed as part of a Templeton-funded research project (Massey et al. 2015). Subsequently, involvement in a book featuring thirteen case studies from an international range of authors, from different contexts and belief systems, offered the opportunity to analyse the chaplaincy practice described in order to build a paediatric-specific taxonomy derived from paediatric cases rather than beginning with an adaptation of one constructed for an adult context. The taxonomy was developed through a thematic analysis of the thirteen cases undertaken by an experienced registered paediatric chaplain (author) and checked by a chaplaincy researcher (author). The spiritual needs identified in the first case study project were then matched with elements from the newly derived taxonomy by (authors).

The reason for undertaking this synthesis is to enable chaplains to identify a range of methods to respond to identified spiritual needs which helps them identify an appropriate intervention in light of their assessment. This article articulates both the spiritual needs that are more prevalent in such patients and also a language to describe what chaplains are doing when offering spiritual care, the how of chaplaincy (see Section 5 below). The three most prevalent spiritual needs and corresponding taxonomy elements are illustrated from practice reflecting the thirty-six chaplaincy encounters completed by (author).

2. Understanding Spirituality and Spiritual Needs

2.1. Spirituality

The healthcare system in the UK aspires to offer care for ‘whole people’ adhering to the General Medical Council (GMC) guidance for good practice, which says ‘psychological, spiritual, social and cultural factors’ and ‘patient’s views and values’ must be assessed (GMC 2024, p. 7a). Teilhard De Chardin, a French idealist philosopher, Jesuit priest, palaeontologist and geologist, argued that all human beings are spiritual beings (De Chardin 2008, p. 47); therefore, it is a basic offer of common humanity to offer spiritual care to all patients. The assessment and appropriate intervention needed in offering spiritual care to a sick child are influenced by all aspects of their developmental stage, life experiences, and familial and sociocultural contexts (Alvarenga et al. 2017). Alvarenga et al. (2017) argue that provision of spiritual care to children and young people (CYP) in times of illness and hospitalisation is integral and essential when offering holistic care. It is also important to note that caring for a sick child means engagement with whole families, not merely individual patients (Nash et al. 2015, p. 21), and families are complex units.

In the current debate about how to define spirituality, research makes it clear that spirituality is a significant dimension of human experience (Fisher 2011; McSherry and Cash 2004). Much of the literature around spirituality discusses the variety of definitions across disciplines (Nash et al. 2015, p. 16) and illustrates a reluctance to critically engage with the concept of spirituality fully (Clarke 2009; Bull 2016, pp. 13, 15). Whilst developing broad, generic, existential definitions, there has been a tendency to separate spirituality and religion. Additionally, there has been difficulty distinguishing spirituality from psychosocial care in some of the literature (Clarke 2009).

Spirituality may be described as sacred, transcendent, or broadly as a deep sense of aliveness and interconnectedness (Krentzman 2016). Spirituality may include religious expression, but not necessarily; it may also include a person’s understanding of the role and importance of transcendence. As Teilhard De Chardin said, “We are not human beings seeking to be spiritual rather we are spiritual beings striving to be human” (De Chardin 2008, p. 47).

The concept of spirituality as part of a whole-person approach to healthcare can be understood as a universal but individual human dimension, encompassing deep human needs such as hope, meaning, security, and transcendence (Bryson and Bryson 2012). In ‘Spirituality and Health’, Büssing et al. define spirituality very broadly, including all “attempts to find meaning, purpose, and hope in relation to the sacred or significant, which may have secular, religious, philosophical, humanist, or personal dimensions” (Büssing et al. 2014, p. 1).

In the evidence-based culture of the NHS, it is a challenge to convince people that “experience, meaning, hope, love, a search for God and transcendence can be seen as legitimate clinical categories” (Swinton 2012, p. 103). Swinton continues to argue that despite there being no agreement over definition (Chan 2009; Narayanasamy 2014), the area of human experience understood as spirituality is crucial, whether expressed generically, in a more structured religious form, or uniquely and personally. Swinton says, “Coming close and understanding is the essence of healthcare spirituality and good spiritual care” (Swinton 2012, p. 103).

Spirituality can be the vehicle that facilitates identifying crucial absences and recognises gaps in healthcare provision, in addition to challenging how healthcare is provided. However, within the NHS, spirituality is a highly contested concept (Swinton and Pattison 2010, p. 233), but it is often recognised that people need assistance on their ‘spiritual quests’, whatever form that may take.

Despite the continuing debate concerning definitions of spirituality, a literature review regarding spirituality, spirituality in CYP and those with long-term health challenges, spiritual needs, spiritual assessment, and spiritual care revealed a number of categories through thematic analysis (Maguire and Delahunt 2017). Six key categories were identified and shaped the following phenomenological working definition of spirituality which includes the sources of these different elements:

Spirituality is an integral dimension of our humanity (Hay and Nye 2006; Bryson and Bryson 2012; Miller 2015) which encompasses the way individuals seek and express (Puchalski et al. 2014) meaning-making (Hay and Nye 2006; Bryson and Bryson 2012; Mata-McMahon 2016), hope, security (Hay and Nye 2006; Bryson and Bryson 2012), significance (Spencer 2012), connectedness (Hay and Nye 2006; Yust et al. 2006; Puchalski et al. 2014; Krentzman 2016), and the importance of transcendence (linking with something greater than themselves) (Hay and Nye 2006; Yust et al. 2006; Bryson and Bryson 2012; Cobb et al. 2012; Spencer 2012; Nash et al. 2015; Krentzman 2016; Bryson et al. 2018, p. 8).

2.2. Spiritual Needs

Need is commonly understood as requiring (something) because it is essential or very important rather than just desirable. Spiritual needs are essential for the optimum functioning of human beings because spirituality is an integral and significant dimension of humanity (Fisher 2011). Narayanasamy (2010) identifies ways that spiritual needs may be expressed, for example, the need to find meaning and purpose, forgiveness, a source of hope and strength. These are important for health but do not satisfactorily define spiritual needs (Nash et al. 2015, p. 15).

The ‘Human Givens’ (Tyrrell and Griffin 2016) approach to psychology defined basic human needs as innate knowledge programmed into human beings genetically from conception, believing that people experience this knowledge as feelings of physical and emotional need. These needs, Tyrrell and Griffin argue, are incorporated into our biological make-up identified as innate resources and drivers of human nature (Tyrrell and Griffin 2016). Included in these needs are such categories as security, feeling part of a wider community, meaning, and purpose, which intersect with areas of spiritual need (Bryson 2012). Bryson (2012) proposes a whole-person approach to need which incorporates concepts from both Maslow (1970) and Human Givens (Tyrrell and Griffin 2016), identifying spiritual needs.

In a healthcare context, identifying and meeting spiritual needs is about helping people, including CYP, whose sense of meaning, purpose, and worth is challenged in the face of illness. Unaddressed spiritual needs may impact the healing process, and so an awareness and assessment of spiritual needs enables the provision of effective care (Murray et al. 2003). The three ‘S’s of significance, security, and self-esteem have been identified as ‘cues’ regarding the spiritual needs of patients (MacDonald 2019). The existence of spiritual needs, it is proposed, relates to the essence of being uniquely human (Narayanasamy 2010).

3. Spiritual Assessment of Sick Children’s Spiritual Needs

Spiritual assessment is a vital component of effective spiritual care (Ross and McSherry 2025) and occurs through conversation, active listening, observation, and engagement in spiritual care activities. A number of spiritual assessment models have been developed, such as the acronyms HOPE (Anandarajah and Hight 2001, p. 63), FACT (LaRocca-Pitts 2007, pp. 1–2), and FICA (Puchalski and Romer 2000, pp. 129–37). These models for assessment of spiritual needs can be useful; however, Nolan (2012, pp. 107–9) questions their viability if there is not an agreed-upon definition of spiritual health to measure the assessment against. Designed for the assessment of adults’ spiritual needs, they lack a paediatric focus or the flexibility needed to assess the developing spiritual needs of CYP (Ross and McSherry 2025; Nash et al. 2015, p. 32). Related to this is the process of loss and recovery which shapes the meaning CYP make of their world (Bellous 2008).

Bull (2016) has trialled a model of paediatric spiritual assessment based on the construct of connectedness using play and storytelling. He describes the interaction between the patient and healthcare professional as the ‘Zone of Proximal Connectedness’ (Bull 2016, p. 130), using the skills of hospitality, liminality, reflexivity, and connectedness to assess the patients’ spiritual needs. He suggests that connectedness is the map which offers a way to navigate the journey through the maze of spirituality for CYP (Bull 2016). His emphasis seems to be equipping the ‘healthcare professional’ to assess the sick child’s needs and incorporate them into the overall hospital experience and healthcare story.

One of the challenges for assessing childhood spirituality and spiritual need is that needs vary according to the developmental stages of the child, as identified by Erikson (1950). However, it should be noted that there is a growing awareness of the limitations of such theories. Carle offers this helpful summary: “While the impetus for this body of work [child development theories] was justifiable given the historical context, it also hampered any attention to the particular and enculturated experiences of children and to any regard for their own understanding of their lives” (Carle 2024, p. 143). Thus, while being aware of underpinning theories can provide some helpful insights (Roberts 2018), it is important to ensure the patient has agency and is seen as unique in their own enculturated context. CYP have a varying and changing sense of spirituality (Bellous and Csinos 2009), and therefore spiritual assessment is a continuing process. However, not all patients necessarily choose to engage in identifying and addressing those needs (Ross and McSherry 2025). The assessment of the spiritual needs of CYP through the use of creative activities in addition to observation, conversation, listening, and narrative is a method identified as an interpretive spiritual encounter (ISE) (Nash et al. 2015, pp. 31–32). An ISE enables both assessment and intervention and a further care plan to be developed (Nash et al. 2015, pp. 31–32). Assessment for all ISEs involves such elements as active listening, open questions, conversation with patient and family members, observation, body language, creating relationships of trust, building on previous relationships if already established, reflection, and assessing the degree of engagement with spiritual care activity. This evidence is gathered and recorded, along with outcomes of the spiritual care activity, if used, which facilitates communication, exploration, and relationship building.

Through the ISE, the spiritual care practitioner empowers CYP to explore the issues that arise as a result of participation in the activity (Nash et al. 2015, pp. 34–36; Fitchett and Nolan 2018, p. 36).

A thematic analysis of chaplaincy encounters was performed by one of the authors (Bryson). She used spiritual play activities, alongside conversation and active listening, in the assessment of spiritual needs when delivering spiritual care to CYPs with long-term conditions in a hospital. This analysis led to a range of associated themes for each of the identified six spiritual needs which correspond to the definition of spirituality derived from her literature review (

Table 1. Spiritual needs emerging from thematic analysis of 36 cases.

Rank Order	Spiritual Need	Most Frequently Occurring Themes	Number of Entries
1	Meaning-making	Journeying; silence; lament; suffering; grief, loss; mystery; compassion	36
2	Transcendence	Faith; heaven; eternity, sense of the sacred; trust; love; forgiveness; personhood	35
3	Connectedness	Family; belonging; relationships; community; acceptance	30
4	Security	Fear; vulnerability; anxiety; aloneness; being secure; being loved, encouraged, affirmed	24
5	Hope	Waiting	20
6	Significance	Identity and self-esteem; value, worth; contributing to the life of others; acceptance	18

).

4. Using a Taxonomy to Shape Chaplaincy Interventions

One of the things which is helpful for chaplains is to articulate what it is they do. A taxonomy is one approach that has been used to do that. With permission, a Paediatric Chaplaincy Taxonomy was developed by Birmingham Women’s and Children’s Hospital (BWCH) from the Templeton-funded work of Advocate Health Care (Massey et al. 2015; Nash et al. 2019). The taxonomy has three elements defined as follows in a report:

The first category is Intended Effects. This is the desired contributing outcome the chaplain is striving to help address or meet. It is the goal or the perceived need of the encounter. Intended Effects seek to articulate “Why” the chaplains did what they did. To what end is the chaplain working?

The next set of terms is the Methods column. Methods are a kind of bridge, or “via,” between the Intended Effects and the Interventions. They seek to describe how a specific intervention supports the intended effect. The Method is the way in which a specific action or activity supports a purpose, goal, and outcome. This is the “How” of the chaplaincy encounter.

The Interventions are the concrete chaplain gestures, actions, or activities in a visit. This is the “What” of the encounter (Hughes et al. 2019, p. 4).

Subsequently, we (Nash and Nash) applied the BWCH Taxonomy to international case studies reflecting a range of contexts and belief systems which we were working on as co-editors of a Transforming Chaplaincy book project (Desjardins et al. 2026). As part of this work, the case studies were also analysed for Methods, and seventeen new categories were identified, which are included in

Table 2. Numbered taxonomy elements in alphabetical order.

Newly Identified Taxonomy Methods from Paediatric Chaplaincy Case Studies
1	Age-appropriate explanations	10	Manage spiritual distress
2	Being able to stay with painful emotions	11	Name Fears
3	Collect a whole-person view of the patient	12	Normalise and affirm
4	Convey a non-judgemental presence	13	Permission-giving and affirming
5	Draw on cultural knowledge	14	Separately work with patient and family
6	Encourage the telling of people’s stories	15	Support religious care
7	Give voice	16	Validate feelings
8	Hold silence	17	Welcome uncomfortable questions
9	Laughter and silliness

below.

In this article, the focus is solely on the Methods element of the taxonomy, the How. Having initially considered the Intended Effects (the Why), the chaplain then must decide which Method is most likely to address the spiritual needs identified. Interventions tend to be very contextually and culturally specific, and a range of interventions is described below. The interventions are illustrative of a wide range of possibilities which chaplains are best placed to identify in relation to the particular patient or family with whom they are working. In

Table 3. Spiritual needs and Methods which can be used in addressing those needs.

Spiritual Need	Numbered Method from Taxonomy (in Alphabetical Order)
Meaning-making	2 Being able to stay with painful emotions
	3 Collect a whole-person view of the patient
	6 Encourage the telling of people’s stories
	8 Hold silence
	10 Manage spiritual distress
	11 Naming fears
	12 Normalising and affirmation
	13 Support religious care
	17 Welcome uncomfortable questions
Transcendence	3 Collect a whole-person view of the patient
	4 Convey a non-judgmental presence
	5 Draw on cultural knowledge
	8 Hold silence
	10 Manage spiritual distress
	15 Support religious care
	17 Welcome uncomfortable questions
Connectedness	2 Being able to stay with painful emotions
	3 Collect a whole-person view of the patient
	4 Convey a non-judgemental presence
	5 Draw on cultural knowledge
	6 Encourage the telling of people’s stories
	9 Laughter and silliness
	11 Naming fears
	12 Normalising and affirmation
	13 Permission-giving and affirming
	14 Separately working with patient and family
	15 Support religious care
	17 Welcome uncomfortable questions
Security	2 Being able to stay with painful emotions
	4 Convey a non-judgmental presence
	6 Encourage the telling of people’s stories
	7 Give voice
	8 Hold silence
	10 Manage spiritual distress
	11 Naming fears
	12 Normalising and affirmation
	13 Permission-giving and affirming
	15 Support religious care
	16 Validate feelings
	17 Welcome uncomfortable questions
Hope	2 Being able to stay with painful emotions
	6 Encourage the telling of people’s stories
	10 Manage spiritual distress
	12 Normalising and affirmation
	13 Permission-giving and affirming
	15 Support religious care
	16 Validate feelings
	17 Welcome uncomfortable questions
Significance	2 Collect a whole-person view of the patient
	7 Give voice
	8 Hold silence
	12 Normalising and affirmation
	13 Permission-giving and affirming
	14 Separately working with patient and family
	15 Support religious care
	16 Validate feelings
	17 Welcome uncomfortable questions

the Methods have been aligned with the six spiritual needs (articulated in Table 1) which emerged from analysis of spiritual care encounters with long-term paediatric patients. Having assessed a need, the Methods give insight as to how to best respond to that need. The specifics of the responses will then be individually determined. The How is more important than the What because of the culturally and contextually determined nature of the What. Inevitably, there is overlap, with some Methods being appropriate for a variety of spiritual needs, and in practice, patients and their families may well present with more than one need over the course of one or more encounters. Some of the Methods are relevant across any encounter with a patient and their families, particularly the use of age-appropriate explanations, demonstrating acceptance, encouraging sharing of feelings, offering emotional support, offering spiritual, religious, or other support, and collaborating with care team members. Apart from age-appropriate explanations (1), these Methods are all from the original BWCH Taxonomy.

Thus, when a specific spiritual need is identified, looking at the associated methods can help in choosing an appropriate intervention which can include all the elements discussed in relation to ISEs above. In the discussion of specific, anonymised interventions below, the relevant taxonomy element number is included in brackets at the end of each vignette shared.

5. Interventions Responding to Identified Spiritual Needs

To illustrate how a chaplain responds to an identified spiritual need, examples from the three most common spiritual needs identified in the research are outlined below. The corresponding taxonomy element numbers from the specific spiritual need being discussed have been added retrospectively (the taxonomy research was completed later). This illustrates how the taxonomy aligns to the interventions, focusing on the main spiritual need being addressed.

5.1. Exploring Meaning-Making

Meaning-making can be crucial in illness. Park (2013) identifies the difference between global and situational meaning as significant in illness. Thus, she suggests that helping patients to adapt their global meaning to incorporate their illness can aid well-being. She notes that spirituality can impact this particularly with regard to the situational (i.e., illness) meaning because constructs of God or deities may often shape global meaning. Thus, in reflecting on interventions with a meaning-making intention, this perspective can be helpful to understand.

One of the meaning-making themes which emerged from an analysis of the thirty-six cases was journeying. The need to explore and process the difficult journey of many paediatric patients is one requiring intervention. For example, I (Author) use pebbles with patients to reflect on the features of the pebble and how it has been fashioned, imagining the stormy processes that have shaped it to become uniquely beautiful. This can become pivotal in making sense of the difficult journey ahead that they are navigating (11, 13, 17).

I met 7-year-old Lindy when she was first diagnosed with leukaemia. Making a treasure box with me on the day she was discharged, she put a series of tiny footprint stickers inside, illustrating her long cancer journey. She added a pebble to her box, saying it represented really tough times in her treatment programme, like being tossed about in a storm at sea. Lindy understood metaphor. It enabled her to begin making some meaning of her last year (2, 6, 11,13).

Removed for peer review provides instructions for most of the activities described in this section.

I used stones and cairns as metaphors for journeying with Orin, aged five, who had incredible insight into the challenges of having leukaemia. Looking at pictures of steep, rugged mountains, Orin talked about his difficult journey. I showed him a picture of a cairn—a pile of stones that is used by travellers to mark the way and demonstrate that others had walked it previously. I put a handful of small pebbles on Orin’s tray and he built a cairn, a marker showing the way, encouraging him to keep going (2, 6, 10, 11).

Ramlah, a 16-year-old Muslim patient, talked of the steep pathway she had walked with cancer, reflecting on her beliefs. She tearfully said that she had never expressed her feelings before and asked for prayer for hope. I gave her a journal to process her story further in writing (2, 6, 10, 15).

Twelve-year-old Jess from a non-religious family loved thinking and creating in the quiet of her cubicle. She appreciated silence, a safe space, and a trusted relationship on her journey of exploring her sense of self, meaning, and spirituality. As she was decorating a treasure box, she asked one day, “What is our spirit?” Seeking meaning was a significant component of her present situational experience. She said she was considering the purpose of living, unsure whether she believed in God. We discussed concepts such as gratitude (Brown 2010, p. 78; McMartin et al. 2020), contributing to the lives of others, and seeking ways to understand purpose and meaning in life (6, 8, 13, 17).

In each of these examples, the use of metaphor, creative activity, and personal experience (Ennis-Durnstine 2018) enabled an exploration of meaning-making for each patient. All patients come from different starting points, each with a ‘world view’, however young, frequently influenced by their family belief system which will have a particular view on suffering. A chaplain will be aware of this as they work with the patient, and exploring the worldview may be an integral part of the encounter.

5.2. Exploring Transcendence

Transcendence, from the Latin prefix trans-, meaning “beyond,” and scandare, meaning “to climb”, means rising beyond ordinary limitations. It describes a spiritual or religious state of moving outside physical needs and realities. Seidlitz et al. defined spiritual transcendence as a ‘perceived experience of the sacred that affects one’s self-perception, feelings, goals, and ability to transcend one’s difficulties’ (Seidlitz et al. 2002, p. 439). Transcendence also incorporates a long-held theological tension between transcendence and immanence. An immanent God is one who exists within, within us, within the universe, and is involved in our existence. A transcendent God is one who is beyond understanding, independent of the universe, “other” in comparison to humans.

When a child is sick, particularly if they think there is a possibility that they may die, a need to explore the transcendent may emerge. Six-year-old Romanian Natalia, referred to me by a nurse concerned about her lack of English, joined me in the Oncology play area that day. I explained the treasure box activity with signs and body language. Natalia decorated her box, placing a tea light and a gold heart inside it, representing God’s light and love for her. I communicated that she was unique, valued, and loved through body language, facial expressions, praying hands, and hands on heart. Natalia finally left clasping her treasure box.

I assessed a disconnectedness and insecurity in Natalia and her Mum. They were anxiously processing a recent diagnosis of cancer in an unfamiliar hospital context. They were dealing with huge loss (Bellous 2008). Throughout the encounter, a sense of peace and transcendent presence grew. God’s presence alongside people is a recurrent biblical concept; for example, Psalm 16:8 (TPT) uses the phrase ‘wrap-around presence’. It encapsulates moments in this encounter (4, 8, 10, 15).

Three generations of Jake’s family knew a sense of transcendent longevity surpassing the boundaries of time through prayer and a sense of belonging, to one another and to God. Jake, aged six, was keen to make a spiritual care bracelet, so I asked him about his choices. For example, when he chose a yellow bead meaning ‘I belong’, I asked who he belonged to. His reply was, “Nan, and Mum as well”. Mum confirmed that Jake was very close to Nan. Jake’s favourite bead was red, meaning ‘I matter’ in this activity, and he also liked heart-shaped beads that mean, ‘I am loved/wanted’. A transcendent presence was apparent in this encounter (3, 15).

Tim, an articulate four-and-a-half-year-old, describes both a transcendent and an immanent experience. When making a Caring Tree with each leaf representing his family, including Great Granddad, he explained the recent arrival of Great Grandad in heaven. Tim has a simple, strong belief in God’s care for Great Grandad in heaven forever and for his family on earth. This faith needs nurturing. There was a sense of transcendence, a sanctuary in a safe space (Nash et al. 2015, p. 60; Nye 2009, pp. 42–45; Yust et al. 2006, p. 8) (3, 5, 15, 17).

Seven-year-old Karl was undergoing a bone marrow transplant with six weeks in isolation. His enthusiasm to engage in ISEs never faltered. Every encounter invited a sense of the sacred. On this occasion, Karl’s keenness to decorate a special treasure box for an important religious day, Easter Sunday, fitted completely with the family’s Roman Catholic belief framework. A tangible faith of his own is nurtured within the family faith tradition (see Cobb 2005, p. 11), and Mum encourages Karl to ask questions and think for himself. As we prayed before I left, transcendence and immanence were almost tangible in the isolation room. The sacred moments of silence and prayer extend to the many times we have laughed with joy, sung Karl’s favourite song, and danced together! The dissonance between faith and a seriously ill child was evident here. A dissolved boundary between Karl and his hospital environment and interconnectedness with someone greater than himself resulted in a transcendent presence being discovered (4, 5, 8, 15, 17).

Transcendence is integral to my working definition of spirituality and the second most frequent theme to emerge from my case studies. It is an immense and wide-ranging concept which requires much further examination in the context of CYP with cancer. The examples above touch on immanence, the sacred, connectedness with something greater than self, hope, comfort, and meaning-making; many of these concepts intermingle with other categories of my spirituality definition. Many more components arose, such as faith, trust, prayer, love, and healing, which require further examination. Importantly, it has been seen from this research that transcendence is not confined to the boundaries of age, intellect, ethnicity, or health.

5.3. Exploring Connectedness

Connectedness is a core feature of our spirituality (Hay and Nye 2006; Bull 2016). The dislocation of being in a hospital as well as changing circumstances can mean that exploring connectedness is a significant presenting need. The ISE with Micah, aged fourteen, highlights aspects of this. Micah painted a picture of a huge sunflower growing in dry soil; he said it reminded him of living in the Caribbean as a child with his Grandmother. This intervention created sacred space for Micah to reflect on his childhood and express current difficult relationship issues such as connecting with his stepdad. He longed to resume ‘normal’ school life, attending Scouts and reconnecting with peers. Recalling family heritage and expressing loss contributed to Micah’s processing of disconnection. Telling his story about family life in the Caribbean and verbalising the challenge of connecting with his stepdad allowed some rebuilding of connection. We sensed a wistful transcendence as we imagined life in the Caribbean on a cold February day in England in the teenage cancer unit. This example recognises the importance of story and connectedness (2, 3, 5, 6, 11, 12, 14).

One occasion, using the Blob Tree (Wilson 2004) as an assessment tool, I asked six-year-old Jake which Blob he felt like. He pointed to two Blobs cuddled up together! Mum likened herself to the Blob that was hanging on to a branch by its fingertips, needing support. Auntie J wanted to be on the branch where four Blobs engaged together. Each person expressed their desire to be relationally connected and supported in a community, a deep spiritual need (3, 12, 14).

Doehring (2006) identifies loss in a number of categories: material, relational, intrapsychic, functional, role, and systemic. For Romanian Natalia, the loss of home, family, familiar culture, community, connectedness, physical health, and language all combine to face her with a deep sense of disconnectedness. The Trinity represents the concept of community and God himself operating on the basis of relationship (Rohr and Morrell 2016, p. 56) and connection with his people. In this encounter, when Natalia made a treasure box, where disconnectedness was so apparent, it was a privilege to build relationship, community, and connectedness and extend compassion and spiritual care to Natalia and her Mum (2, 3, 11, 14).

Yasha called across the Oncology playroom, asking if he could sit beside me to make something. Thinking carefully about the meaning of the coloured beads, he made spiritual care bracelets for himself and his siblings. He spoke tentatively about his fears as he beaded, worries concerning his illness and his longings. He talked about his family, about being Muslim and his long illness stopping him from attending Mosque. He felt alone and insecure, despite being part of a large family. A deep need for connectedness and security was identified in this ISE (2, 3, 5, 11, 12, 15).

Connectedness is an essential part of exploring spirituality, which needs to be facilitated sensitively, with authenticity, professionalism, and a high regard for developmental age, stage, and autonomy of CYP. Facilitating exploration of spirituality for families as well as CYP is integral to paediatric spiritual care.

5.4. Addressing Identified Needs over the Longer Term Through a Care Plan—Mark’s Story

While sometimes encounters with patients are a one-off, often when working long-term with patients, a wide range of spiritual needs may be identified, and a care plan helps to ensure these will be addressed over time. The example of Mark below illustrates the need to build on meeting the identified spiritual needs, being constantly aware of travelling alongside the patient and family, revisiting the spiritual need assessment, and reshaping the care plan as appropriate.

This example from my practice of working with Mark, an eleven-year-old who had a brain tumour, illustrates the way an ISE can operate (Fitchett and Nolan 2018, pp. 37–50). Mark was previously an able, well child, and after surgery, he was paralysed, only able to nod or shake his head, yet he understood everything. Mark’s limited means of communication and inability to physically participate in activities were challenging. However, his comprehension was clear, and I aimed, every time I visited, to affirm him and empower him, creating a safe space and time for him to know he was a valued individual. I offered to make a spiritual care bracelet or keyring with him early on as we were establishing a relationship. Mark chose to make the keyring. Slowly, Mark and I went through the steps to make a bead keyring. Mark nodded or shook his head, telling me his choices at every stage. It became apparent through the beads Mark chose, which represented different needs, that he needed strength and peace, hope for the future, to know he was loved and that he could contribute to the needs of others. I talked to him about the way he hugely contributes to the family, how Mum and Dad value his presence, and the courage and strength he offers to them through his determination. I assessed that Mark needed to be reassured of how much he was securely loved by his Mum and Dad and by God and how he needed to know that he belonged to family and the hospital community (Fitchett and Nolan 2018, p. 40).

This ISE involving a patient-led encounter allowed me to assess the spiritual needs of the patient, develop that assessment, and make a follow-up care plan (Fitchett and Nolan 2018, pp. 43–46). Thus, Mark had communicated that his most important spiritual need (by nodding or shaking his head when I pointed to each coloured bead) was contributing to the lives of others. This need assessment shaped every encounter I had with Mark over the following 11 months. To know that you contribute to the lives of others even when you are paralysed and cannot speak is a deep spiritual need which I endeavoured to address. This is illustrated by the following story: One day, Mark and I made a board with different words on it expressing emotions, which Mark had chosen. The idea was to empower Mark to communicate how he was feeling more effectively. A nurse came busily into the cubicle just as we were finishing, saying, “How are you today Mark?” I suggested she look at Mark’s new feelings board, and Mark nodded or shook his head as she pointed to each emotion. Finally, he nodded at the penultimate word—hopeful. The nurse beamed with delight and said that it had made her day to know that Mark was feeling hopeful. After she left, I chatted with Mark about how his encounter with the nurse had truly contributed to her spirits being lifted and how valuable his contribution had been to her day’s experience. Through further spiritual play activities, conversation, non-verbal communication, sensing the transcendent presence through Mark’s tears and his beautiful lop-sided smile, I offered spiritual care throughout his slow journey to life at home (2, 3, 5, 6, 11, 12, 13, 14, 16).

6. Conclusions

Despite the continued and much-debated discussion around spirituality, the depth of spiritual experience and potential spiritual growth which is stimulated in CYP facing loss through illness is evidenced in these encounters. The significance of this cannot be underestimated. It is important to provide a context in which meaning-making, hope, security, significance, connectedness, and transcendence can be explored and expressed. Clearly, CYP, like all human beings, have spiritual needs. There is no more poignant time for this to be apparent than when facing a serious illness. Assessing the spiritual needs of such CYP, addressing them, and creating interventions and care plans which empower CYP to focus on their spirituality and well-being, whilst their physical well-being is so evidently impaired, is paramount. This article offers a practice-based exploration of spiritual needs and ways of responding to those needs. The taxonomy research informs the intervention in relation to the spiritual needs assessed, and the case studies from practice illustrate how interventions enable the exploration and meeting of spiritual needs.