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International Network for the Study of Spirituality

Doctoral theses written by INSS members



Scholars who have recently completed, or who are nearing the completion of, a doctoral thesis in the field of spirituality studies are invited to join INSS and to display an Abstract of their thesis on these networking pages.

Contact Katja Milner  (Katja.Milner@nottingham.ac.ukfor further information. 


Image by Kranich17 from Pixabay


ABSTRACTS

Name: Gulnar Ali

Main field of study: Nursing Education - Advanced Practice

Title: MULTIPLE CASE STUDIES EXPLORING INTEGRATION OF SPIRITUALITY IN UNDERGRADUATE NURSING EDUCATION IN ENGLAND

PhD, completed 2017. University of Huddersfield, UK, Department of Human and Health Sciences

ABSTRACT

Introduction: Difficulties persist in conceptualising spiritual needs and understanding their relationship to religious needs and wellbeing in healthcare and particularly in nursing education. This research was undertaken to explore approaches and challenges associated with this area in undergraduate nursing education in England.

Methods/Methodology: Using a systematic approach, a literature review covering the period 1993-2017 was undertaken to explore potential issues and challenges reported. Applying case-study methodology, data were collected from three university nursing schools from different parts of England. Sources for data triangulation within schools included, curriculum review of undergraduate nursing courses, exploring the views of nursing educators through semi structured interviews and focus group studies with nursing students. Template analysis was used to identify themes in the data.

Findings: Due to the module-based curriculum, the integration of spirituality in nursing education appeared to be treated as a matter of personal choice and convenience rather than as an essential domain of teaching and learning practice in England. Owing to conceptual complexity, addressing religious needs was often considered to be synonymous with addressing spiritual care need. Factors were identified contributing to the difficulties in the issue of educating nurses in this area. These were: lack of clarity in curriculum documents; uncertainty as to how far nurses should address these issues and how far this was a specialist chaplaincy function; fear of being judged or rejected in a multicultural environment; and the dominance of disease-centred care. The participants voiced a desire for developing a shared understanding through developing a more explicit representation of spirituality in nursing education and the recognition of appropriate educational approaches in this area. Based on the findings of this study a learning framework is proposed; SOPHIE (Self-exploration through Ontological, Phenomenological, Humanistic, Ideological, and Existential expressions), to encourage self-awareness and reflexivity among nursing educators and students. SOPHIE aims to bring ontological authenticity and congruency to the forefront of nursing knowledge and practice.

Conclusion: Constructing knowledge through ontological learning engagements among educators and students is essential to develop role clarity, authenticity and empowerment in understanding and addressing spiritual care needs. A multidisciplinary teaching approach integrating medical anthropology, humanistic psychology and existential phenomenology should be explored as a basis for an integrated nursing curriculum that could explore spirituality in its widest sense.

Email: gulnar.ali1@hotmail.com


Name: Guy Harrison

Main field of study: Psychotherapy, Health and Spiritual Care

Title: THE RELATIONSHIP BETWEEN COUNSELLING AND PSYCHOTHERAPY AND SPIRITUAL AND PASTORAL CARE IN THE PRACTICE OF A HEALTHCARE CHAPLAIN: AN AUTOETHNOGRAPHIC NARRATIVE CASE STUDY EVALUATION

D.Psych, completed 2016. Middlesex University, UK, School of Science & Technology, Metanoia Doctoral Studies Department

ABSTRACT

This project describes and evaluates the relationship between counselling and psychotherapy and spiritual and pastoral care in my practice as Head of Spiritual and Pastoral Care within an NHS Trust. The literature suggests that a gap in knowledge exists regarding the relationship between therapeutic practice and spiritual and pastoral care. The purpose of the research is to generate insight into this relationship within a multi-disciplinary context in order to clarify the role and contribute to both the knowledge base and the development of practice. The project comprises a personal story researched through an in-depth, single narrative case study of practice, set within an autoethnographic frame. Field stories of my practice are presented using the lens of a researcher-practitioner interpretation of what took place. A reflexive approach is adopted in order to convey as faithful an account as possible of the elements of each encounter.

The reflective nature of the writing is both iterative and creative in its approach. The findings demonstrate that within the complexities of the role of the chaplain who is also a therapist it is possible to bring together psychological, spiritual and pastoral insights into practice in ways that are integrative and holistic. The research evidence together with the products associated with it also demonstrates the current lack of conceptual clarity around the role and the need to describe its psychotherapeutic, spiritual and pastoral integrity and identity.

The study describes an integrated psycho-spiritual approach and concludes that its adoption makes it possible to integrate training and experience in both counselling and psychotherapy and spiritual and pastoral care. It offers the proposition that integration of contemporary spirituality with practical theological insights and the application of a Person Centred therapy can act as a resource for the development of what is described as Radical Presence.

Contact: Dept of Spiritual & Pastoral Care, Oxford Health NHS Foundation Trust, CS Building, Littlemore Mental Health Unit, Sandford Rd, Littlemore, Oxford OX4 4XN.

Email: guy.harrison@oxfordhealth.nhs.uk  


Name: Nasreen Lalani

Main field of study: Nursing

Title: RISE ABOVE: EXPERIENCES OF SPIRITUALITY AMONG FAMILY CAREGIVERS OF PALLIATIVE CARE PATIENTS IN A HOSPICE SETTING IN PAKISTAN

PhD, completed 2018. University of Alberta, Canada, Department of Nursing and Midwifery

ABSTRACT

Background: Family caregivers play a vital role during the time of illness of a family member. Family caregivers experience various physical, emotional, psychosocial, and spiritual concerns while caring for a family member with a life-threatening illness, especially in a hospice setting. Current literature mainly adds to understanding the physical, psychological, and emotional aspects of family caregiving. Spiritual aspects of family caregiving such as personal values and the meanings that family caregivers ascribe to their caregiving roles often remain unaddressed. While caring for a seriously ill family member receiving palliative care, family caregivers go through multiple transitions, make new resolutions, adjust to changing roles and expectations, and experience grief and other complex caregiving situations where their search for meaning becomes evident. There is an increasing need to explore such experiences of spirituality among family caregivers to support their caregiving actions and practices.

Purpose: The study aimed to describe the experiences of spirituality among family caregivers and how these experiences shape their family caregiving practices while caring for a terminally ill family member in a hospice setting in Karachi, Pakistan.

Research Design: Interpretive descriptive design guided the study. Individual in-depth interviews were used as a method of data collection. Study setting was Baitul-Sukoon Cancer Hospital and Hospice in Karachi, Pakistan. A sample of family caregivers (n=18) and healthcare professionals (n=5) was selected from a cancer hospice facility in Karachi. A total of 28 interviews were taken from the family caregiver participants. For collateral data collection, 5 interviews were taken from the healthcare providers. The qualitative data analysis software, Quirkos, was used to manage the data. Permission for the study was obtained from the Bait-ul-Sukoon Hospice. Ethical approval was obtained from Human Research Ethics Board of the University of Alberta.

Results/Findings: Demographic characteristics of family caregivers showed that mean age of family caregivers was 34.06years. 83% were Muslims, 78% were female, 72% were married, 28% did not have any formal education, and 72% were living in extended families. 61% reported their income between Canadian $160-200/month. The average caregiving period was 1.72years. Analysis of the rich descriptions revealed four themes under study which were: family love, attachment, and belongingness; honoring family values and dignity; acts of compassion and selfless service; and seeking God’s kindness and grace. All these themes led to a central theme ‘rise above or self-transcendence’. The four themes reflect the unique experiences of spirituality among family caregivers. Family caregivers identified their uncertainties, losses, and sufferings as part of life and perceived them as invitations to open themselves to the depths of their spirits and to the support, service, and love of others as they experienced ‘rise above’ or self-transcendence. Family caregivers uncovered meaningful engagement, a sense of belonging, and a sense of attachment while serving family and others. They highly valued the love, respect, and honor of the family, showed compassion, believed in God’s blessings and grace and experienced constant spiritual growth and self-transcendence.

Conclusion: My findings present a novel perspective of spirituality and family caregiving from an Eastern context. Findings signify that spirituality is a major resource of coping among family caregivers. Healthcare professionals need to acknowledge and develop spiritual care interventions to support family caregivers’ spirituality and spiritual wellbeing at the end of life in the hospice setting.

Email: lalanin@purdue.edu


Name: Judy Lam

Main field of study: Spirituality and spiritual direction in cross-cultural missions

Title: UNION AND COMMUNION: THE MYSTICAL SPIRITUALITY OF JAMES HUDSON TAYLOR (1832 - 1905)

PhD, completed 2023. University of the Free State, Bloemfontein, South Africa, Faculty of Theology & Religion, Department of Old and New Testament Studies

ABSTRACT

Introduction: James Hudson Taylor (1832-1905), founder of the China Inland Mission in 1865, was one of the most prominent 19th century British Protestant missionaries in China. Despite his profound influence on Chinese Church history, Protestant missions, and the ‘faith missions’ movement, his mystical spirituality has not received the attention it deserves. This ground-breaking study brings Taylor’s mystical wisdom to the fore and underscores its relevance for contemporary soul discourse.

Methods/Methodology: Based on a selection of Taylor’s spiritual writings from mid-life onwards, and identifying resonances with the Western Christian mystical tradition, his leitmotif of union and communion is explored from three perspectives, namely: mystical text, mystical transformation, and mystical path. Sandra Schneider’s three-step hermeneutical approach proved apt for a multi-layered, inside-out investigation. Step 1: the ‘existential descriptive phase’ explores Taylor’s devotional commentary on the Song of Songs as an authentic ‘expression of soul love’ (Union and Communion, first published in 1890-91). Step 2: the ‘contextual analytical phase’ identifies his mystical transformation as ‘an experience of soul rest’ (a defining moment in Zhenjiang, 1869, termed the ‘Exchanged Life’, is described in relation to John 15). Step 3: the ‘creative constructive phase’ elucidates Taylor’s ‘embodiment of soul work’ along a mystical path of faith, hope, love, and grace; as well as the impact on his missionary vocation (reflections on the apostle Paul’s missionary methods).  

Findings: With union and communion as hermeneutical cue to Taylor’s mystical spirituality, the crux and dynamos of his missionary praxis is captured as intimacy with God. The interface between his mystical spirituality and missionary spirituality therefore pivots on this inner dimension; moreover, it effects lifelong transformation. The following three paradigms encapsulate Taylor’s transformative journeys: ‘from unrest to soul rest’; ‘from holy striving to wholly abiding’; and ‘from living sacrifice to loving sacrament’. These findings generated a rubric for holistic soul care that encompasses soul love, soul rest, and soul work.

Conclusion: The value of Taylor’s mystical wisdom lies in its biblical basis, experiential richness, family connectedness, and mission emphasis. Accordingly, the recognition of Taylor as a Christian mystic cum missionary would augment his spiritual legacy. First, as evidenced in later years, he may be aptly regarded as a bridal mystic of the Song of Songs’ tradition. Second, his spiritual intimacy and tender-heartedness from mid-life onwards resonate with the beloved disciple of the Fourth Gospel. Third, as a man ‘in Christ’, he stands on the shoulders of the apostle Paul, a mystic and missionary entrusted with an unprecedented mission vision.

Link to Thesis: https://scholar.ufs.ac.za/items/8711196c-415d-46bb-9db3-bdbebd7c2447

Email: judi.jubilate@gmail.com



Name: Catherine Lambert

Main field of study: Nursing

Title: Dwelling on the Edge: A Spiritual Director Hears Contemporary Women Respond to the Beguine Mystics

PhD, completed March 2022, University of Divinity, Melbourne

ABSTRACT

Introduction: Reading [the beguines] increased my thirst to be able to live faithfully on the fringe’. (Alice)                             Like Alice and other participants in this study, many contemporary women who seek spiritual direction find themselves dwelling on the edge of formal church communities. Training programs for spiritual direction have not focused on the experience of those disenchanted with the church. Many do draw on the inherited experience of earlier seekers but with exemplars recognised within the institution, especially from monastic and Ignatian traditions. For contemporary women disenchanted with the institutional church, models deeply rooted within the tradition may not be the most helpful. In order to explore the value of exemplars from the edge of the tradition for the practice of spiritual direction, this interdisciplinary study introduced a group of contemporary Australian women to the lives and writings of thirteenth-century beguine mystics and sought their responses to the experience. This study asks the questions: How do contemporary women on the edge of the church respond to the lives and works of the beguine mystics from the thirteenth century? And what are the implications for the practice of spiritual direction?

Methodology: Using Constructivist Grounded Theory, the project involved three depth hearings. First, listening to the stories from a sample group of thirteen contemporary women of their journeys to the edge of the church. Then, and concurrently, reading the texts of three beguines; Hadewijch of Brabant, Mechthild of Magdeburg and Marguerite Porete. These two depth hearings supported the development of a contemplative resource for the sample group. The third depth hearing collated their responses to their engagement with the beguines.

Findings and Conclusions: Overall, the struggle to discover their own inner spiritual authority connected the women across centuries. In identifying this resonance, the contemporary women developed a relationship with the beguines that transformed and influenced their own journeys. Their encounters underline the importance of remembering the beguine mystics, the value of this method of contemplative engagement with historical mystics and the need for explicit validation of the richness of the edges of tradition within spiritual direction.

Email: cathielambert@hotmail.com


Name: Sophie MacKenzie

Main field of study: Speech and Language Therapy


Title: MOSAICS, AMBIGUITY AND QUEST: CONSTRUCTING STORIES OF SPIRITUALITY WITH PEOPLE WITH EXPRESSIVE APHASIA

PhD, completed 2017. Canterbury Christ Church University, UK, Department of Health and Wellbeing

ABSTRACT

Despite the current emphasis on person centred, holistic care in health, the concept of spirituality has been discussed very little in the field of speech and language therapy (SLT). The nursing spirituality literature has proliferated in the last twenty years but, by contrast, very few SLT studies exist which mention the spiritual needs of patients with communication problems and how they express them. Individuals experiencing severe, life-changing events, such as a stroke, may need to engage with and discuss their spiritual needs, in order to make sense of what has happened to them. The aim of this study was to discover what it is like to express spiritual issues when one has an acquired communication impairment (aphasia). I also wanted to discover what it is like to be a healthcare professional working with people with communication impairment expressing their spirituality. I used a phenomenological approach in order to interview eight people with aphasia about their spirituality. Participants with aphasia used a variety of strategies to express these ideas, which included employing non-verbal communication techniques, such as gesture, writing key words, intonation and artefacts. I also interviewed five members of the multidisciplinary stroke team (MDT) about what it is like to work holistically with people with aphasia. Each interview resulted in a participant story. People with aphasia talked about religious themes, such as visions and prayer, but also non-religious life meaning-makers, such as gardening and art. MDT members discussed themes such as spirituality as part of their remit and giving the patient time to communicate. The stories were then explored through the interpretive lens of some concepts propounded by Merleau-Ponty (2002), namely ambiguity, lived body, language and thought, and wonder. Frank’s illness narratives (chaos, restitution and quest) were also considered in order to analyse the participants’ stroke journey in relation to expressing spirituality. People with aphasia can and do discuss their spiritual concerns, particularly when they are entering a quest phase of their illness narrative. They employ many non-verbal mosaics in order to convey spiritual issues, and are helped by the listener employing a phenomenological attitude of openness and attentiveness. Healthcare professionals expressed their willingness to listen to their patients’ spiritual stories, in the interests of holistic practice. Being able to express spiritual needs can enhance wellbeing, help foster therapeutic rapport, and enable people to engage more fully in the rehabilitation process.

Link to Thesis: https://www.proquest.com/openview/77ad0b35f5c6c1d11893866042decdcb/1?pq-origsite=gscholar&cbl=51922&diss=y

Emailsmackenzie@aecc.ac.uk

 

Name: Ronita Mahilall

Main field of study: Spiritual Care in Palliative Care

Title: SPIRITUAL CARE IN HOSPICE PALLIATIVE CARE SETTINGS IN SOUTH AFRICA: NATIONAL CURRICULUM NEEDS, DESCRIPTION OF PROVINCIAL SERVICES, AND A LOCAL CASE STUDY

PhD, completed 2021. Stellenbosch University, South Africa, Department of Psychology

ABSTRACT

Palliative care is gaining momentum in South Africa. Spiritual care is slowly being recognised as an important component of palliative care and hospice work. However, how spiritual care services are offered and prioritised depends largely on the hospices’ ability to fund this service and to have the necessary skilled spiritual care staff in place to offer this specialised service. The aim of this study was to explore if hospices in palliative care settings in South Africa offered spiritual care services, how spiritual care services were offered, what the spiritual care training needs are and, more critically, to explore if there was a need to develop a national spiritual care training curriculum.

To answer these questions, I conducted a three-tiered study. In Sub-Study One, I conducted an online survey of all hospices registered as member organizations of Hospice Palliative Care Association of South Africa. The aim of this Sub-Study One was to explore what spiritual care services were currently being offered at hospices nationally, what spiritual care training needs existed and, how hospices suggested filling the training gap. In Sub-Study Two, I conducted focused group discussions with hospices in the Western Cape province of South Africa. These focus groups explored the above questions but with a focused view on issues of multi-layered contextual diversities and inequalities which, largely, are by-products of the South African apartheid era. Sub-Study Three took the form of one-on-one interviews and focused group discussions with participants who are practising spiritual care workers registered with St Luke’s Combined Hospices in Cape Town, to explore how they offer spiritual care services and navigate issues of diversity. Further, I explored this cohort’s spiritual care training needs and their ideas of developing a national spiritual care curriculum for South Africa.

The findings of this three-part study suggest that hospices in South Africa offer spiritual care services to varying levels, and where such a service is not on offer, arrangements are made to link patients and families to external resources. Common to the three sub-studies was the expressed need to develop a national spiritual care training curriculum that had both an academic and practical component to it. However, the realities of limited funding and limited expertise in spiritual care was a significant consideration towards developing a spiritual care curriculum. Added to that was the consideration of the multi-layered diversities that are part of South Africa and its troubled history. These findings present further perspectives on the fluid, dynamic and often multifaceted nature of an aspect of health care provision in South Africa. The study concluded by outlining some potential next steps for developing further dialogues on spiritual care services in South Africa.

Email: ronitam@stlukes.co.za


Name: Katja Milner

Main field of study: Mental Health and Spirituality, Health Sciences, Spiritual Care

Title: "DID I LOOK AT THE BLACKNESS OR DID I LOOK AT THE STARS?" THE ROLE OF SPIRITUALITY IN MENTAL HEALTH AND RECOVERY

PhD, completed 2023. University of Nottingham, UK, School of Health Sciences, Department of Medicine and Health Sciences, Institute of Mental Health, ESRC.

ABSTRACT

Introduction: Despite an increasing awareness of the importance of spirituality in mental health contexts, it is often still a neglected dimension within practice. Some researchers have identified a ‘religiosity gap’ highlighting a lack of understanding and addressing of service users’ spiritual needs by mental healthcare providers. In addition, much existing research on spirituality and health focuses on clinical outcomes rather than exploring the relationship between spirituality and mental health and recovery from the perspectives of those who experience mental health issues. This research project aims to address this gap in knowledge and the research question: What is the role of spirituality in mental health and recovery. It does this in two stages. First, exploring the experiences of spirituality among adults with mental health difficulties through a qualitative systematic review. Second, using a narrative methodology to explore the role of spirituality in 30 stories of people who have current or previous experiences of mental health difficulties, focussing specifically on the way people use spirituality to find meaning in their experiences and how this process develops over time.

Methods/Methodology: A qualitative research design has been chosen as it can illuminate understanding of lived experiences and bring comprehensive insight into complex areas such as spirituality. Study 1: Qualitative Systematic review. An electronic search of seven databases was conducted along with searching bibliographies and forward-referencing of all eligible studies, hand-searching journal contents pages and expert consultation. Thirty-eight published studies were identified which met the inclusion criteria. Study 2: Narrative Interview Study. After obtaining ethical approval, a purposive sampling method was used to recruit 30 adult participants within non-NHS settings. Participants were interviewed for on average an hour to an hour and a half using narrative interviews. They were asked to share their personal experiences of spirituality, mental health and recovery. A pluralistic emergent narrative thematic analysis approach was developed to explore superordinate themes of: Meaning making, Psychospiritual development and Spiritual connection.

Findings: Study 1: A thematic synthesis of the study findings identified six key themes: Meaning-making, Identity, Service-provision, Talk about it, Interaction with symptoms and Coping, which can be presented as the acronym MISTIC (Milner et al., 2020) Study 2: A salient finding not adequately addressed within empirical research was the articulation of meaning making for some participants as an internalised form of spiritual guidance. Another key finding was the importance of authenticity within the context of their psychospiritual growth. An emergent integrative factor relating to all superordinate themes was the concept of spiritual functionality. This highlighted how spirituality operated within participant experiences both to support and sometimes challenge their mental health and recovery. Spiritual functionality could therefore be a useful concept within mental health and clinical contexts to advance understanding of sometimes highly subjective and nuanced spiritual and mental health experiences.

Conclusion: The outcomes of this thesis provide a number of knowledge contributions. These include the production of an original conceptual framework highlighting key themes pertinent to people who experience spirituality in the context of mental health and recovery. It also provides novel insights into the ways in which meaning making, psychospiritual development and spiritual connection may function within this context. It contributes towards the development of evidence, theory and training resources for clinicians and mental health services to enable better understanding and reduce stigma of people’s spiritual experiences in the context of mental health. A paradigm of healthcare delivery is highlighted which validates and integrates the spiritual dimension into an evolving recovery approach.

Email: Katja.Milner@nottingham.ac.uk 


Name: Melanie Rogers

Main field of study: Health - Advanced Practice

Title: SPIRITUAL DIMENSIONS OF ADVANCED NURSE PRACTITIONER CONSULTATIONS IN PRIMARY CARE THROUGH THE LENS OF AVAILABILITY AND VULNERABILITY: A HERMENEUTIC ENQUIRY


PhD, completed 2016. University of Huddersfield, UK, Department of Nursing and Midwifery

ABSTRACT

Introduction: There is a scarcity of research examining spirituality and spiritual dimensions of Advanced Nurse Practitioner practice. This thesis explores the findings of a hermeneutic enquiry into the spiritual dimensions of Advanced Nurse Practitioner consultations in Primary Care through the lens of Availability and Vulnerability. The findings include Advanced Nurse Practitioners’ understandings and conceptualisation of spirituality, the place of spirituality in practice and some of the concerns related to integration in practice. The participants’ interviews explored their own personal and professional experiences which added to their conceptualisation of spirituality. The lens of Availability and Vulnerability (A&V) was used intentionally and openly to explore, in depth, spiritual dimension of practice with the participants. The utility and effectiveness of the concepts of A&V in this context was explored.

Methods/Methodology: A hermeneutic phenomenological enquiry was chosen to explore spirituality through the lived experiences of the Advanced Nurse Practitioners (ANPs). Eight participants were interviewed face to face during 2 in-depth interviews spaced 18 months apart. The concepts of A&V were introduced to the participants before the second interviews. The lens of A&V was utilised within these interviews to discover whether or not these concepts were helpful for operationalising spirituality in practice. The prolonged engagement allowed dialogue to occur between the researcher and participants allowing data to be captured which provided a thick description of the phenomenon of spirituality. A thematic analysis was chosen to interpret the data in order to enable a deeper understanding of the spiritual dimensions of ANP consultations to be gained.

Findings: The participants recognised that spirituality can be difficult to conceptualise and operationalise in practice. However, many of the participants were able to articulate the meaning of spirituality for themselves and gave examples of when they had witnessed a spiritual dimension occurring in practice. Particular themes were expressed in the interviews in relationship to spirituality. These included the context for spirituality to be integrated into care, the emotional engagement needed and the emotional impact on the ANP and the patient. Having introduced the concepts of A&V to the participants, after deep exploration, they recognised and identified that A&V were concepts which could be a useful lens for understanding spirituality in ANP consultations.

Conclusion: This study has uncovered new knowledge and understanding in the realm of spirituality in ANP consultations in Primary Care. The conceptual understanding of spirituality and the framework of Availability and Vulnerability provides a new approach to spirituality within ANP consultations in Primary Care.

Email: m.rogers@hud.ac.uk



Name: Louise Natalie Spiers

Main field of study: Health Psychology, Consciousness Studies

Title: A Transpersonal Understanding of Spiritual Experiences in Individuals with Epilepsy


PhD, completed 2021. University of Northampton

ABSTRACT

Introduction: Epilepsy is the most common neurological condition and its association with spirituality has been established since first being recorded by the Babylonians. Western medical approaches to epilepsy concentrate on diagnosis and compliance with medical regimens and assume that patients desire a cure, partly because the condition is highly stigmatised. By contrast, some people with epilepsy report subjectively meaningful experiences related to their seizures which have a spiritual nature. These experiences and their meaning are lacking in the literature. This thesis explores the tension between the perspectives of the biomedical literature and the experiences of people with epilepsy.

Methods/Methodology: In this research, two qualitative studies were undertaken exploring a phenomenological approach to experiences of spirituality in individuals with epilepsy. In Study 1, the researcher used her own experiences with epilepsy to create an evocative autoethnographic narrative. Prose, poetry, photographs and paintings were used to evoke the reader’s emotional response to themes of stigma, disability, chronic illness and spiritual transformation. Study 2 used Interpretative Phenomenological Analysis (IPA) to consider the lived experience of spirituality in epilepsy from the perspective of 5 women and 3 men in the UK. Face-to-face, semi-structured interviews enabled participants to give deep and rich accounts of their experiences and their meaning. Following a process of IPA analysis, idiographic findings were presented as participant vignettes. Three cross-case Superordinate themes were developed, identifying convergences and divergences of participant experience. 

Findings: Superordinate theme 1, Exceptional Experiences, explores the phenomenology of the spiritual experiences and the noetic insight they offer. Superordinate theme 2, Managing Relationships With Others, examines the response that participants feel society had to their epilepsy and spiritual experiences, illustrating the resulting interaction that participants have with others. Superordinate theme 3, A transformed self, identified the way that these spiritual experiences have influenced the participants’ self-concept and the meaning that they have in their lives. Key findings from the research include the need for clinicians to be aware that their understanding of epilepsy in purely medical terms can exacerbate tendencies for the condition to be pathologized and stigmatised, neglecting mystical aspects of the experience that may not be purely a consequence of organic dysfunction. Participants who had these experiences prized them highly and prioritized them over seizure control. Spiritual experiences are seen as contributing to participant well-being. The similarity between some spiritual experiences in epilepsy and other exceptional experiences is highlighted, emphasising their transformational qualities. The thesis identified several areas for future research that included the need to identify how common spiritual experiences are amongst those with epilepsy, the potential relationship between spiritual relationships in epilepsy with mediumship, the parallels with exceptional and anomalous experiences in individuals without epilepsy, and the need to explore the personal and professional attitudes of medical professionals towards spirituality in epilepsy.   

Conclusion: This research has given a view into the lived experience of spiritual experiences in epilepsy and their transformative potential, normalising these experiences for individuals with epilepsy. The research suggests that they be included with other exceptional human experiences in the psychological literature. Importantly, the research significantly impacts the way that the medical community engages with individuals who have spiritual experiences because of their epilepsy and warns against pathologizing without exploring the context and result of the experience.

Keywords: epilepsy, temporal lobe epilepsy, stigma, spirituality, transpersonal, autoethnography, IPA, phenomenology, mysticism, exceptional experiences

Email: Louise.Spiers@northampton.ac.uk




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