'Make Them Wonder How You Are Still Smiling': The Lived Experience of Coping With a Brain Tumour.

A brain tumour can be a life-threatening illness and cause unique symptoms compared to other types of cancer, such as cognitive or language deficits, or changes in personality. It is an exceptionally distressing diagnosis which can affect quality of life, even for those with a low-grade tumour or many years after the diagnosis. This study sought to gain an in-depth understanding of the lived experience of adjustment to living with a brain tumour. Twelve individuals (83% female) with a primary brain tumour (83% low-grade) took part in the study. Participants were aged 29-54 years, on average 43 months following the diagnosis, and were recruited through the charitable support organisations in the United Kingdom. In-depth semi-structured interviews were conducted, transcribed verbatim, and analysed using interpretative phenomenological analysis (IPA). Six inter-related themes were identified: making sense of the diagnosis, seeking empowerment, feeling appreciative, taking charge of coping, learning to accept, and negotiating a new normality. Notions of empowerment, gratitude, and acceptance throughout the illness journey were prominent in the participants' narratives. Receiving sufficient information and initiating treatment were important in negotiation of control. The results highlighted what facilitates and hinders adaptive coping. Aspects which facilitated positive coping were as follows: trust in clinician, feeling in control, feeling grateful, or accepting. Participants on a 'watch and wait' approach, while feeling appreciative, perceived the lack of treatment as difficult and frustrating. Implications for patient-clinician communication are discussed, particularly for patients on a 'watch and wait' who might need additional support in adjusting.

Birth trauma: the elephant in the nursery.

METHOD: The current study used a multiperspectival (dyadic) IPA approach to interview eight participants (N = 4 heterosexual couples) where one parent was help-seeking for the experience of birth trauma. RESULTS: Analysis resulted in four superordinate themes: (1) From perfect plan to shattered reality, (2) Trauma in the healthcare system, (3) Trauma in the family system and (4) The post-trauma family: Navigating the new normal. DISCUSSION: Parents described a shared experience of birth trauma during birth. However, fathers' perceived trauma ended in the delivery room whilst mothers' continued far beyond this. The dyadic focus showed a divergence of experience postnatally: differing levels of awareness to distress existed between partners, mothers experienced bonding difficulties and parents took to separate coping mechanisms. The trauma remained invisible and unspoken as couples avoided discussions about the birth, coped silently and separately. The parents identity changed following the trauma as individuals, couples and as a family. CONCLUSION: The time following a traumatic birth is experienced differently by mothers and fathers. Parents seldom discuss the trauma, hold differing perceptions of roles and needs, and struggle to support each postnatally. Clinical implications and recommendations are discussed.

Psychoeducational groups for people with Amyotrophic Lateral Sclerosis and their caregiver: a qualitative study.

OBJECTIVE: The current study aimed to describe the implementation of a structured psychoeducational intervention in Amyotrophic Lateral Sclerosis (ALS), identifying the needs of both patients and their caregivers. METHODS: Five patients and thirteen caregivers attended eight psychoeducational group meetings at the Respiratory Rehabilitation Unit of IRCCS Santa Maria Nascente of Fondazione Don Carlo Gnocchi, Milan (Italy) and eight participants underwent semi-structured interviews once the group sessions ended. Group sessions and semi-structured interviews were audio-recorded and transcribed verbatim. Then, data obtained by group meetings' transcripts have been analysed using the grounded theory (GT) paradigm, while those obtained by interviews have been analysed using the interpretative phenomenological analysis (IPA). RESULTS: The analysis of the meetings allowed us to identify seven main themes: "practical advice", "explanation of the pathology", "recognition of emotions", "adaptation", "family and relationships", "being caregiver of oneself", and "sharing". Twenty-one sub-themes also emerged from the transcripts' analysis. The analysis of the interviews allowed us to deduce the main reasons to participate (i.e., to have information and to be able to share experiences), the positive and negative aspects of the experiences. These results suggested the usefulness of psychoeducational groups in the regular clinical practise to allow patients and caregivers to share advice, emotions, and experiences with others in the same situation. CONCLUSIONS: This study displays the utility of psychoeducational group intervention in supporting people with ALS and their caregivers because of two main reasons: first for the psychoeducation provided by professionals; second for the possibility of sharing experiences and emotions with people in the same situation.

Contending with Spiritual Reductionism: Demons, Shame, and Dividualising Experiences Among Evangelical Christians with Mental Distress.

The belief that mental distress is caused by demons, sin, or generational curses is commonplace among many evangelical Christian communities. These beliefs may have positive or negative effects for individuals and groups. Phenomenological descriptions of these experiences and the subjective meanings associated with them, however, remain somewhat neglected in the literature. The current study employed semi-structured interviews with eight evangelical Christians in order to idiographically explore their experiences of mental distress in relation to their faith and wider communities. Through an interpretative phenomenological analysis, two superordinate themes were constructed: negative spiritualisation and negotiating the dialectic between faith and the lived experience of mental distress. Participants variously experienced a climate of negative spiritualisation, whereby their mental distress was demonised and dismissed, and they were further discouraged from seeking help in secular institutions and environments. Participants often considered such dismissals of their mental distress as unhelpful and stigmatising and experienced heightened feelings of shame and suffering as a result. Such discouragement also contributed to the process of othering and relational disconnection. Alongside a rejection of church teachings, which exclusively spiritualised psychological distress, participants negotiated a nuanced personal synthesis of faith, theology, and distress, which assumed a localised and idiographic significance. This synthesis included advocating for the uptake of aetiological accounts, which contextualised mental distress in terms of the whole person and resisted de-politicised, dichotomised, and individualistic narratives. Results are discussed in relation to a broad range of literature in the field, while further research suggestions are provided.

My sibling's mental illness: An interpretative phenomenological analysis of experiences of having an adult sibling with a mental illness in semi-rural South Africa.

BACKGROUND: When there is a lack of resources in the community to support deinstitutionalisation, the siblings of an individual with a mental illness are the ones who are the most affected and vulnerable. Nevertheless, sibling care work is still largely unacknowledged in the mental health sector in low- and middle-income countries. AIM: This article describes and interprets the lived experiences of 'black' isiXhosa-speaking individuals having a sibling with a mental illness, to shed light on how mental health professionals might support and sustain the involvement of individuals in the treatment and care of their sibling. SETTING: The study was conducted in a semi-rural town in the Eastern Cape of South Africa. METHODS: The study employed a qualitative research design using interpretative phenomenological analysis as the research method. Semi-structured interviews were conducted and analysed. RESULTS: The findings present interview extracts which give voice to participants' experiences of financial burden, social burden and stigma, and of engaging with psychiatric treatment while providing care for their mentally ill sibling. Findings also highlight the positive aspects of caring for a sibling with a mental illness. CONCLUSION: This study specifically highlights the gendered nature of care work and siblings' increased understanding of mental illness by virtue of their relationship with their brother or sister, thereby possibly pointing to sibling relationships as valuable relational resources for challenging stigma. The study findings suggest that calls for greater cooperation between healing belief systems should include dialogue with western religious belief systems alongside traditional healing belief systems.

An interpretative phenomenological analysis of the experiences of older people self-managing cancer pain at home.

Cancer is predominantly an illness affecting older people, yet there is a higher risk of under-treated pain in this age group. Many older people are required to self-manage their cancer pain at home but this is currently an under-researched and poorly understood area. We explored the experiences of older adults who self-manage cancer pain at home using an Interpretative Phenomenological Analytic approach. Eight older adults (aged 72-85 years) were recruited from a hospital in the United Kingdom and interviewed using a semi-structured questionnaire. Themes which emerged from the analysis suggest the self-management of cancer pain involves a perceived loss of control followed by a temporal process of gaining control over pain. Subordinate themes reflected the physical and social restrictions caused by pain; leading to fears regarding familial burden. Participants utilized inner strengths, past experiences, and social support to cope. Successful self-management of cancer pain in late life is conceptualized utilizing a positive psychology framework.

The experience of epilepsy in later life: A qualitative exploration of illness representations.

The objective of this study was to explore how older people living with epilepsy appraise their condition through their lived-experience. The common-sense model of illness representations (CSMIR) provides a framework to explain how individuals make sense of and manage health threats. Semi-structured in-depth interviews based on the CSMIR were conducted with ten people with epilepsy who were above the age of 65. The results were analyzed using Interpretative Phenomenological Analysis. Three overarching themes emerged from the analysis: 'the power of epilepsy', 'they say you can live a normal life but you can't' and 'attempts to adjust and cope'. Epilepsy was described as a threatening, persistent, and unpredictable condition associated with distressing experiences. Participants described a process of balancing negative psychosocial consequences including stigma, loss of control, and reliance on other people and medication with parallel co-existing coping strategies. These attempts to manage the condition were characterized by a desire for acceptance and increased awareness of epilepsy, strategies to restore loss of control, and strength derived from supportive relationships. We conclude that there is large scope for psychosocial interventions in healthcare provision for this patient group. The roles of specialist nursing, relationship-centered models, psychotherapy, educational, and self-management programs are highlighted.

Holding on while letting go: trauma and growth on the pathway of dementia care in families.

OBJECTIVES: Limited research explores the medical model of residential care in dementia from the family caregiver's perspectives. METHOD: This study sought subjective interpretations of nine family caregivers who experienced relinquishing their status as primary caregiver to a medical model, dementia care residential setting. Following semi-structured interviews and transcription data was analysed using interpretative phenomenological analysis. RESULTS: One superordinate theme, navigating 'system' control, overarched three subordinate themes: connecting/disconnecting, windows closing, and capacity for sensation. Navigating system control reflected participants' experience of circumnavigating a medical system fraught with hierarchical challenges inclusive of a complex maze of contradictions that appeared threatening, yet appeared comforting; authoritarian, yet often humane. For them, care of self, while advocating for a family member with dementia, required vigilance to manoeuvre a system of care that imposed its uninvited authority at will. Connection/disconnection highlights the enduring struggle for inclusivity in caregiving despite the omnipresent trauma of windows closing. Psychological growth came to these participants through an unexpected capacity for sensation which offered a unique lens to communication with the family member with dementia primarily through sensory exchange. CONCLUSIONS: Models of dementia care and therapeutic interventions could inclusively involve dementia family caregivers who may be experiencing traumatic distress, and associated guilt, stigma, loss, and grief. Co-existing psychological wellbeing, however, is possible when family members are encouraged to transition communication to sensory awareness and exchange as windows close.

What is the Lived Experience of Being Discharged From a Psychiatric Inpatient Stay?

Psychiatric patients encounter many difficulties post-discharge reflected by quantitative data such as high suicide rates within the first 3 months. However, little is known about why discharge is so difficult. This article aimed to understand the lived experience of being discharged from a psychiatric unit. Eight participants were interviewed to explore their experiences of discharge. Interpretative phenomenological analysis was used to analyse data. Four superordinate themes emerged: leaving hospital; the outside world; the journey to health; and self-identity/beliefs. Clinical implications and suggestions for further research are discussed.

The Unknown/The Unanticipated: A Surgical Journey of Correcting HIV-Related Abdominal Lipodystrophy.

The aim of this study was to explore the pre- and postsurgical journey to correct severe abdominal lipodystrophy of a woman living as AIDS defined for over 23 years. It utilized interpretative phenomenological analysis (IPA) and a single-case-study approach to capture the subjective understanding and sense-making of this surgical process. Verbatim transcripts of seven semi-structured interviews, three participant-created word boards of words or phrases clipped from magazines, field notes, and a reflexive journal were collected as data. Analysis revealed two superordinate themes: the unknown and the unanticipated. These themes simultaneously manifest with shared and nuanced meanings, including the unknown and unanticipated of surviving AIDS and discovering lipodystrophy, the unknown and the unanticipated of the surgical intervention itself, and finally the unknown and the unanticipated of postsurgical complications and experiences within outpatient and inpatient medical settings.

Transplant Trajectory and Relational Experience Within Living Kidney Dyads.

Living kidney donation is considered common practice across most Westernized countries. While extensive research has documented the experience of living donors, few studies have addressed the perspective of recipients, and even fewer have examined the experience of donor and recipient as an interactive dyad. In this study, our aim was to examine the reciprocal influence between donors and recipients across the transplantation process. We recruited a homogeneous sample of 10 donors and recipients, who were interviewed individually. Data were analyzed using interpretative phenomenological analysis. The presentation of results follows the stages of the transplantation process: the disease experience, the experience of offering and accepting a kidney, the screening period, the surgery, and the post-transplantation period. Results are discussed within the framework of Mauss's gift exchange theory, social roles, and altruism. This comprehensive description of the dyadic experience provides a way to frame and understand psychosocial aspects and relational implications of living renal transplantation.

Exploring the experiences of people with hypo- and hyperthyroidism.

Thyroid diseases evoke a complex range of psychological and physical symptoms. The psychosocial aspects of living with diseases causing hypo- or hyperthyroidism are poorly understood. In this article, we report the findings of a qualitative interview study in which we explored the lived experiences of 16 people with hypo- or hyperthyroidism. We purposefully selected participants from Danish outpatient clinics according to their diagnosis (Hashimoto's thyroiditis or Graves' disease with or without orbitopathy), age (18 to 65 years), and duration of treatment (more than 6 months). We used interpretative phenomenological analysis (IPA) as a theoretical frame and analytical approach and identified three superordinate themes: losing control over mental and physical states, ambiguous signs of disease, and negotiating sickness. We discuss the findings in the context of the recent literature on chronic illness and argue that these themes play an important role in the conceptualization and management of thyroid diseases.

Pakistani children's experiences of growing up with beta-thalassemia major.

In this study, we explored the lived experiences of children with beta-thalassemia major (ß-TM). We considered children as experts on their experiences in contrast to the prevalent approach of asking parents or other adults about children's perspectives. The sample consisted of 12 children aged 8 to12 years. There were two stages to data collection. In Stage 1 we employed two focus group discussions and two role plays and analyzed the data thematically. This directly informed Stage 2, consisting of 12 in-depth interviews subjected to interpretative phenomenological analysis. From our findings we show that living with ß-TM involves a continuous struggle between feelings of being different and strategies to minimize these differences to strive for normalcy. We suggest that understanding the experiences of living with ß-TM from children's perspectives can provide unique insights into their experiences, which can fill the gap in the existing, predominantly adult-oriented research on chronic illness.

The evolution of case management for service members injured in Iraq and Afghanistan.

In this article we describe the nursing care needs of wounded service members (WSMs) from the wars in Iraq and Afghanistan and the evolving role of the nurse case manager (CM). New types of injuries, in-field treatment, immediate transport to multiple care centers, and new technologies have created a new patient population of WSMs that requires new types of nursing care and knowledge. We interviewed 235 nurses, including CMs from nine military treatment facilities (MTFs) and the Veterans Administration (VA), on actual patient care experiences and new knowledge development, and 67 WSMs about their experiences of care. New military and VA nurse case management roles are essential for the effective functioning of the evolving, highly specialized, and transport-based health care system. Working effectively with WSMs required that the CM role be expanded beyond health care management to include family support, re-entry, and life coaching for the extremely altered life circumstances of WSMs.

'Venturing Towards the Dark Side': The Use of Imagery Interventions by Recently Qualified Cognitive-Behavioural Therapists.

UNLABELLED: Despite the growing recognition of the value of mental imagery within the field of cognitive-behavioural therapy (CBT), there is minimal research relating to clinicians' experiences of using imagery. This paper explores recently qualified CBT therapists' clinical experiences of using imagery and their perception of the role of imagery within their practice. Twelve therapists, qualified within the past 4 years, were interviewed using a semi-structured format, and the resulting transcriptions were analysed using Interpretative Phenomenological Analysis (IPA). The analysis identified six super-ordinate themes: (1) broad and fluid conception of imagery; (2) the importance given to imagery and the varied rationale for its inclusion; (3) varied application; (4) clinician avoidance and apprehension; (5) personal experience of imagery and impact on use; and (6) limited core training and the potential for future use. The themes, as a whole, described a complex and often dichotomous reaction to imagery amongst the therapists. Although a section of participants reported a natural affinity with imagery, other therapists felt that using, and experiencing, imagery was anxiety provoking and problematic. There was, however, unity in the value placed on imagery, the strong rationale for usage and the importance given to imagery-specific training. Avoidance and apprehension regarding imagery were evident in the majority of participants, and the reasons for such responses included personal, clinical and cultural factors. The overall findings highlight the importance of clinician factors in the way in which imagery is utilized and understood, which has positive implications for training, personal development and future research. KEY PRACTITIONER MESSAGE: There is a universal recognition of the value of imagery for experiential learning and emotional connection. Therapists apply a variety of rationales for using imagery. Avoidance of using imagery in CBT practice is widely reported and occurs for a variety of personal and clinical reasons. Clinicians' own experience of imagery has a significant influence on the way in which imagery is understood, utilized and experienced in therapy. Future training and research in imagery should more explicitly address the clinician factors that can inhibit or facilitate the use of evidence-based imagery interventions.

Changing Bodies: Experiences of Women Who Have Undergone a Surgically Induced Menopause.

We aimed to explore the lived experiences of women who had a surgical menopause as a result of undergoing a hysterectomy with Bilateral Salpingo-Oopherectomy (BSO). We adopted a qualitative interview design using Interpretative Phenomenological Analysis (IPA), and recruited 7 women aged 47 to 59. We conducted synchronous online semistructured interviews using the MSN (Microsoft Network) Messenger program. In the findings, we examine the prominent and underresearched theme of body image change. We discuss the women's journey from a deep internal bodily change, the meaning of this changing body image, through to the thoughts and behaviors involved with self-presentation concerns and coping with body image changes. A woman's perceived attractiveness and appearance investment are important factors to consider regarding adaptation to change over this transition. The findings might have implications for interventions designed to enhance mental well-being and increase health behaviors in women experiencing gynecological illness and/or menopause.

Giving voice to service providers who work with survivors of torture and trauma.

Clinicians who support people from refugee- and asylum-seeking backgrounds are routinely exposed to stories of trauma as part of their work. Hearing these stories can be highly distressing for clinicians but simultaneously provide opportunities for positive personal growth. Adopting a longitudinal qualitative design, we interviewed 12 service providers at two time points a year apart. We used a semistructured interview protocol and analyzed the data according to interpretative phenomenological analysis. Five superordinate and nineteen constituent themes emerged from the analysis at Time 1 and Time 2. We found that participants were both positively and negatively affected by their work, and their experiences remained relatively stable across time. The participants highlighted the use of organizational and personal coping strategies to help minimize distress and maximize well-being. Adopting a broad repertoire of such strategies is not only advantageous for the service providers but ultimately for those people they seek to assist.

Time while waiting: patients' experiences of scheduled surgery.

Research on patients' experiences of wait time for scheduled surgery has centered predominantly on the relative tolerability of perceived wait time and impacts on quality of life. We explored patients' experiences of time while waiting for three types of surgery with varied wait times--hip or knee replacement, shoulder surgery, and cardiac surgery. Thirty-two patients were recruited by their surgeons. We asked participants about their perceptions of time while waiting in two separate interviews. Using interpretative phenomenological analysis (IPA), we discovered connections between participant suffering, meaningfulness of time, and agency over the waiting period and the lived duration of time experience. Our findings reveal that chronological duration is not necessarily the most relevant consideration in determining the quality of waiting experience. Those findings helped us create a conceptual framework for lived wait time. We suggest that clinicians and policy makers consider the complexity of wait time experience to enhance preoperative patient care.

An exploration of the emotional impact of working in an adult hospice service for Irish healthcare professionals.

PURPOSE: An ageing population and a global pandemic has placed greater demands on palliative care services. Numerous studies describe the patient experience in palliative care, however, few explore the healthcare professional's experience of caring in this setting. This study explored the emotional challenges faced by palliative care professionals working in adult hospice services in Ireland. DESIGN/METHODOLOGY/APPROACH: A narrative phenomenological approach was adopted, using interpretative phenomenological analysis to analyse results from five participants' semi-structured interviews. FINDINGS: The type of challenge experienced reflected the impact it had on the participant's emotional wellbeing. Challenges perceived as achievable contributed to high levels of emotional wellbeing. These challenges often offered the opportunity for skill development and elicited positive feelings. Challenges perceived as uncontrollable negatively impacted the professional's emotional wellbeing and increased their risk of burnout. Examples of this included the shift in service provision and professional expectations. The challenges palliative care professionals experience on a daily basis can negatively or positively impact their emotional wellbeing. CONCLUSION: Overall, this study highlighted challenges and their impacts experienced by palliative care professionals, illustrating key areas for improvement to prioritise staff wellbeing.

Living beyond loss: a qualitative investigation of caregivers' experiences after the death of their relatives with amyotrophic lateral sclerosis.

BACKGROUND: Caregivers of Amyotrophic Lateral Sclerosis (ALS) patients experience varying psychological responses following the patient's death, including sadness, loneliness, guilt, and a loss of purpose. OBJECTIVES: This research aims to investigate the caregiver journey experienced from the time of diagnosis to the loss of a care recipient, with a specific focus on understanding the factors that contribute to improved coping with bereavement. METHODS: The present study used the Interpretative Phenomenological Approach (IPA) to qualitatively explore the accounts of 41 Italian bereaved caregivers of people affected by ALS (Mean Age = 59.78; Female: 60.98%; Male: 39.02%). RESULTS: Results revealed 5 overarching themes representing 5 macro areas that emerged from the analysis of the interviews ("Caregiver's perception of his/her life", "Caregiver's feelings", "Caregiver's life after patient's death", "Caregiver's disease description", "Caregiver's help resources"), these were further defined based on 12 main themes, which were, in turn, articulated into 30 subthemes. The transition from life before ALS ("a peaceful landscape") to caregiver life (compared to the color "black") was a "shock", during which caregivers had to change their needs. However, life after the person living with ALS' death was both characterized by a sense of "re-birth" and "emptiness", and a general need for "psychological assistance" and "social support". CONCLUSIONS: Results emphasize the need to improve the psychological support offered to caregivers of person living with ALS after the patient's death, tailoring it to the specificity of the condition, to meet their emotional needs, reduce isolation and help them cope with practical challenges and plans.