Phase 1: ‘Attention’ to narrative (exploring the parent’s experience)

Study timeline Digital outputs and Publications

PART 1: Exploring narrative approaches and concepts

 Chapter 1: Introduction

 Chapter 2: Underpinning theory and concepts

 Chapter 3: Design and methodology

 Chapter 4: Working with Narrative: An Initial study

My Digital Story: Into the Light Petty (2016a) Publication

Appreciation of the neonatal care experience through the eyes of student nurses. Storytelling resource Petty (2016b) Publication

Petty (2017a) Publication

Petty and Treves (2017) Publication

PART 2: The Main Study: Creating stories from parents’ premature birth

experiences to engender empathy in nursing students

PHASE 1- ‘Attention to narrative’ – Exploring the parent’s experience (Chapter 6)

 Introduction

 Aims and research question  Background  Methods  Analysis  Findings  Discussion Petty (2017b) Publication Petty et al (2018a) Publication Petty et al (2019a) Publication Petty et al (2019b) Publication Petty et al (2019c) Publication

PHASE 2- ‘Representation of narrative’ – Creating the parent stories (Chapter 7)

 Introduction

 Aims and research question  Background  Methods  Analysis  Outputs  Discussion Digital Stories

Creating and telling Stories in Neonatal Care Another World

On the Edge Connections Fighter Our Salvation

The Long Haul Ahead Out of the Darkness Bittersweet

PHASE 3- ‘Affiliation to narrative’ – The impact of stories on empathic learning (Chapter 8)

 Introduction

 Aims and research question  Background

 Methods  Analysis  Findings  Discussion

The Value of digital stories in neonatal care- Your views. – Evaluation Survey

128 6.1 Introduction

This chapter reports on the first phase of the study that, in line with the conceptual framework, focuses on the ‘attention’ to parent narratives in order to develop stories for learning. Set within a narrative, interpretivist theoretical approach, the background literature, methods and analysis within this first phase have three areas of focus. These are; firstly, how parents described their neonatal care experience, secondly the

metaphors used in their accounts of experience and thirdly, the central role of parents in informing the learning of others. The chapter reports on the findings within each of the three areas of interest. It then discusses the application and relevance to practice as well as to the subsequent phase of the study that uses the parent stories to develop digital stories for learning.

6.2 Aims and research question

The research question for phase 1 was: ‘How do parents describe their experience of neonatal care and what can be learnt by students and health professionals in this field?’

The aim of this phase of the study was to ‘attend’ to and explore how parents in neonatal care describe their care trajectory following premature birth and what can be learnt from their narratives about emotional experience. The aim was also, by the end of this phase, to have a set of key themes that would be used in the development of storytelling learning resources for phase 2.

129 6.3 Background

The literature on understanding and exploring parents’ experiences in neonatal care is now discussed, in other words, studies that have ‘attended’ to narratives to explore experience.

6.3.1 How parents describe their experience of neonatal care

Experiencing the birth of a premature neonate and the subsequent admission to the neonatal unit presents parents with significant emotional challenges which are widely documented (Aagaard and Hall, 2008; Turner et al, 2014; Spinelli et al, 2016). Evidence highlights that parents find the neonatal unit a daunting and unfamiliar place (Gavey, 2007; Russell et al, 2014) full of anxiety provoking events, uncertainty and fear about the future of their baby (Al Maghaireh et al, 2016). In chapter 2, a selection of research studies highlighted the potential impact of having a premature baby and the subsequent care experience on various psychoemotional outcomes (Wigert et al, 2006; Fegran and Helseth, 2009; Uhl et al, 2013; Dellenmark-Blom and Wigert, 2014; Russell et al, 2014; Wigert et al, 2014; Blackburn and Harvey, 2018; 2019). Without doubt, the need for intensive care in the early days of life is not only arduous for the baby themselves but also, for the family. The behaviour and appearance of the baby, limited opportunities to accomplish parenting roles and the nature of the neonatal environment are significant stressors related to being a parent in a neonatal unit ( Wigert et al, 2014; Aftyka et al, 2017; Williams et al, 2018) and lack of effective communication from health professionals is seen as a major cause of anxiety (Biasini et al, 2012).

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Moreover, the importance of analysing the emotional experiences of parents in line with a family-centred approach needs emphasising. Further research has highlighted the intense emotions that parents encounter during their time in neonatal care. Dellenmark- Blom and Wigert (2014) termed this experience as an inner emotional journey in a descriptive study that explored parent experiences within one year of going home from the neonatal unit. In addition, literature strongly acknowledges a parental need to seek connections with others (Fenwick et al, 2008) with an importance placed on emotional closeness. This latter point was also illuminated by Flacking et al (2012) who recognised how giving birth prematurely is an abrupt barrier to the transition towards becoming a mother, with feelings of disconnection, inadequacy, inability to fulfil a parental role and, what has been described as ‘temporal suspension’ (Spinelli et al, 2016). To concur, Taylor (2016) highlighted how the words isolation, helplessness and powerlessness are often expressed by parents in the neonatal unit.

Certainly, mothers of premature neonates have been found to go through significant uncertainty in attempting to feel like a proper mother (Aagaard and Hall, 2008; Adama et al, 2016) and it is acknowledged that care given to them should be emotionally sensitive. In addition, more recent literature considers fathers’ needs and how they should receive personalised support as they can be often missed or side-lined leading to high stress levels (Fisher et al, 2018; Noergaard et al, 2018). A qualitative researcher, Crathern (2011) explored the lived experience of first-time fathers and established that emotional challenges on the neonatal unit was a main finding within key themes of anticipatory fatherhood, evolving identity and the difficulties of juggling paid work with visiting the neonatal unit. In addition, Harvey and Pattison (2013), focused on care of fathers during

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resuscitation, suggesting a requirement for more specific education in how to support their needs. One more recent study by Stefana et al (2018), found that fathers of premature neonates preferred not to touch their baby for fear of damaging them, compared to fathers of healthy newborns. They also identified that their baby's

appearance and the technological nature of the environment including equipment were significant causes of stress as well as reporting significant fear about their baby dying.

These studies highlighted important issues relating to the emotional impact on admission to the neonatal unit and associated care, at key points of the neonatal journey. Less work however, has focused on the whole trajectory of the neonatal care experience from pregnancy through the neonatal unit and beyond into the community, from an emotional perspective. One study did explore experiences over this time span (Franck et al, 2017) using interview data from parents in neonatal care who described a variation in the quality of true family-centred experiences from pregnancy through to being at home. The parents also highlighted inconsistencies in how the staff team communicated with them and reported limited practical and emotional support. In another retrospective cohort study on health outcomes and cost of breast milk feeds, secondary analysis of interview data was carried out to explore the experiences of first-time mothers in neonatal care. Mothers were requested to tell their birth stories and how these had impacted on their lives since (Rossman et al, 2017). Recognising what the authors called ‘emotional vulnerability’, the mothers were found to develop emotional resilience by accessing sources of support that actively promoted their mental health. This included key individuals such as peer feeding counsellors or advisors and nurses working at the bedside who were found to positively support them through the neonatal care

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experience and help them cope with their psychological distress. This study reinforced the need for emotional support based on an understanding of parents’ experience.

Most recently, other research has explored parents’ experiences of early care in relation to the impact on later psychoemotional outcomes following discharge (Petty et al, 2018b; Blackburn and Harvey, 2018; 2019; Fowler et al, 2019). Overall, parents described strong emotional narratives lucidly, highlighting the effect of having a premature baby and the subsequent neonatal care experience on their psychological well-being and coping mechanisms. This increases the need for tailored support in the neonatal unit and beyond, often for a significant period of time thereafter.

6.3.2 How parents use metaphor to describe their experience

Studies that have explored emotional experiences of patients have highlighted that one way to describe such experience is through the use of metaphor (Lananjeira, 2013; Kantrowitz-Gordon and Vandermause, 2016; Bleakley, 2017), particularly commonplace when articulating and recalling challenging events that are difficult to convey to others. Theorists have had differing views of metaphor and their value since the days of Aristotle who referred to them being alien names with ‘transference’ (cited in Southall, 2013). The central argument concerned whether metaphors were just an addition to existing

thoughts or words, or whether they really had a deeper meaning. The former was proposed by philosopher Locke (1894), who saw metaphors as misuse of language and that this can portray inaccurate ideas. However, more recently Ricoeur regarded metaphor as fundamental to human expression (Ricoeur, 2003; 2013) allowing the

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creation of meaning in language and recognising the power of this in constructing the world we perceive. Language, including metaphors, can represent how people

understand the world and this has value in retrieving meaning in uncertain times, such as for parents in the neonatal unit who are faced with this uncertainty on an often-

protracted basis. Lakoff and Johnson (2003) saw metaphors as being pervasive in peoples’ lives, actions, thoughts and language,providing information about how they perceive and experience the world. Bruner agreed that metaphor is part of narrative (Bruner, 1992) allowing the creation of meaning and accepted the power of such language in constructing one’s reality. In the context of the current study, this refers to the experience and reality of parents in neonatal care.

Metaphor is a common feature of stories (Llewellyn, 2017) often used to enrich language, express meaning and illustrate concepts in more compelling ways. Its use may enhance the ability to communicate particularly valuable in healthcare, even more so within narrative healthcare, which is based centrally on what people say to, and how they understand, each other. Arroligia et al (2002) said this is due to how metaphor can facilitate communication by rendering new concepts in familiar terms so that the patient can more easily explain and comprehend difficult concepts. Metaphor may have an ability to foster clarity regarding complex or elusive topics such as death (Periyakoil, 2008; Casarett et al, 2010), mental health issues and addiction (Shinebourne & Smith, 2010) and what it is like for patients who are sick during a prolonged stay in hospital (Beck, 2017), a situation many parents in neonatal care can resonate with.

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Examples of common metaphor used in relation to healthcare relate to war (fighting a battle), sports (winning or losing) and machines (referring to the body) (Periyakoil, 2008). Metaphors can help people make sense of both their own and others’ emotional experience particularly as language can be an important mechanism for representing and/or explaining uncertainty (Appleton and Flynn, 2014). Other examples of metaphor in relation to uncertainly and fear are living on a knife-edge or life being like a ticking time-bomb or a ‘simmering pot’ (Beck, 2017: 60) ready to ‘boil over’ anytime. Beck also talked about a ‘dagger to the heart’ in relation to the sheer depth of emotion felt by parents. Nelson et al (2017) referred to families of patients with cancer experiencing a ‘gripping at the heart’. Making sense of such metaphors in relation to how parents feel is key to the area of neonatal care where understanding parents’ emotional experience during difficult and challenging times is important, to give sensitive care tailored to their needs (Obeidat et al, 2009; Fleck, 2016).

Metaphor as a powerful means of relaying emotional experience is linked to the concept of emotion within story. Since they are powerful way of making abstract

concepts explicit, metaphors are frequently used to describe emotional states. The examples given above are potent metaphors which have the potential to move the listener. This in turn, resonates with them which may elicit affective empathy; that is an emotional response that connects them with the storyteller. The relationship between these concepts in how metaphor is linked to facilitating empathy in others has been documented in relation to the enhancement of emotional connections (Southall, 2013) and raised emotional awareness (Beck, 2016; 2017; Hardy and Sumner, 2018) between patients and health professionals. Many conditions are associated with strong emotional

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connotations such as cancer, end-of-life and the uncertainty of life or death and so metaphor can be especially useful as a way of describing and explaining these areas (Woodgate and Busolo, 2017).

Within the neonatal field, a significant amount of research has explored parent

perspectives in relation to experience. As discussed previously. emotional stress, anxiety and challenges such as uncertainty and fear of future outcomes are common themes that are well documented (Turner et al, 2014; Weis et al, 2015; Flacking et al, 2016; Banerjee et al, 2018a). However, in the neonatal field, metaphor specifically has been explored to a lesser degree compared to other fields of nursing and healthcare. A limited number of qualitative studies have provided commentary on how parents describe their experience in terms of the language used to relay what it was like for them emotionally. An early paper written by a parent of a premature baby described her experience using metaphors, such as ‘ roller-coaster’ when referring to the difficulties of navigating through the neonatal trajectory (Layne, 1996). Similarly, in a study of factors affecting coping ability in the neonatal unit, parents referred to this ‘roller coaster’ in relation to their emotions (Stacey et al, 2015), highlighting the highs and lows of their experience; periods of hope followed by uncertainty and fear. Parents in Kantrowitz-Gordon and Vandermause's (2016) study used photographs from their children’s photo history in a six month period since their premature birth to produce rich metaphors representing their distress as parents. The study concluded that metaphors can explain the gravity of

distress in a way that is accessible to those who have never experienced premature birth. Examples of metaphors used to describe the emotional distress they experienced were, continually ‘going through a tunnel’ to depict the darkness they felt and ‘feeling like

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robot’ to describe how they felt numb and lacking in emotion. Separation from their baby at birth for admission to the neonatal unit felt like being, ‘cut from balloon strings’ with a subsequent sense of having no grounding or certainty. This separation was also expressed metaphorically by Aagaard and Hall (2008). In their study exploring mothers' experiences of premature birth, metaphors were used to describe developing reciprocal relationships between themselves and their babies. This was seen as a ‘journey’ from ‘their baby to my baby’. The maternal caregiving role was described as a moving process from silent vigilance to advocacy. Fenwick et al (2008) concluded that ‘becoming

connected' was a significant finding when mothers spoke about their ability to parent their baby in neonatal care. This was later supported by the writings of Fleck (2016) and Flacking et al (2016) regarding the parental distress exhibited when such connections and emotional closeness were not possible.

Such depth of emotion was also seen in the narratives of the parents in a study of post- traumatic stress disorder (PTSD) following traumatic birth. This study did not focus on premature birth per se, as did the others above. However, it revealed nine common metaphors that provided rich insights into the experience of PTSD due to childbirth; namely, feeling like a mechanical robot with the experience being like a ticking time bomb, an invisible wall, a video on constant replay, enveloping darkness, a dangerous ocean, a thief in the night, a bottomless abyss, and as suffocating layers of trauma. More recently, Beck (2017) explored the metaphors used by parents of babies born with obstetric brachial plexus injury. It was found that metaphors assisted mothers to express what they could not verbalise using medical terminology, providing useful insight for staff in understanding their perspectives. Again, while this study did not focus

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on prematurity, the powerful ‘dagger in the heart’ metaphor summarised the depth and intensity of emotion expressed by these mothers caring for a baby with a specific

physical condition. These studies revealed potent metaphors which impart insight into the emotions and experiences of parents for nurses and health professionals to learn from.

The impact on learning is important in the context of this study and there is a place for metaphor within education. Its use can be a valuable way to learn by explaining complex concepts (Kantrowitz-Gordon and Vandermause, 2016) and in the case of stories, they can make unfamiliar experiences more reachable for the learner. Sfard (2014) believed that metaphors enable learners to explore new topics and construct knowledge. Kittay also suggested that metaphor provides a means of learning something novel about the world and it is a tool for ‘rearranging the furniture of the mind’ (Kittay, 1990: 73). Relating to learning within healthcare, Ginn (2011) stated that metaphors have a hidden power that should be understood, being integral to how we understand things and that it is not possible to talk about disease without them. Masukume & Zumla (2012)

discussed how medical signs and pathology have been communicated through metaphors historically, serving as teaching aids and enhancing memory retention for students.

As Jarvis (2005) proposed, telling stories can enable teachers to get closer to their students metaphorically, in that they may allow them to reveal parts of themselves on a personal level, again highlighting the connections that can be formed. Within story, educators may use metaphors to provide students with links to abstract concepts,

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placing complex ideas into more simplistic forms. By this, they may have some transformational benefit in relation to a better understanding of the patient and so, potentially leading to more sensitive care. Milton (2017: 205) explained that metaphors represent concepts or structures of our understanding ‘’undergirded with

transformational creativity’’, emphasising their ubiquitous nature in how they are used to convey unique meaning messages within healthcare.

However, in a learning context, while describing experience using metaphors can contribute to a more vivid and deeper understanding in health professionals, there can also be misunderstandings (Jarvis, 2005). For example, if metaphor is used and is not understood in the way it was intended, this may cause confusion or disquiet in the learner. Box 2.1, in Chapter 2 (pg. 70) discussed the issue of how commentators raise issues with the concept of story in relation to how different people may interpret them as an expression of experience, leading to questions about ‘truth’ of parents’ accounts. The same goes for metaphor. Metaphor may not be interpreted in the same way by different individuals leading to potential conflict in understanding, remembering the premise of people coming to different meanings depending on their own individual context, inherent within interpretivism. Therefore, caution should be applied when using metaphor. This point, as well as further critique of metaphor is discussed later in the chapter.

Nonetheless, given the evidence supporting the potential educational value of metaphors and how they are an integral part of narrative, their use within story creation is explored