Patients’ and physicians’ experiences of atrial fibrillation and anticoagulation therapy:a qualitative journey

Background: Oral anticoagulation (OAC) reduces stroke risk in patients with atrial fibrillation (AF) however it is often underutilized and sometimes refused by patients. This programme of work included a meta-synthesis and two inter-linking studies aiming to explore patients’ and physicians’ experiences of AF and OAC. Methods: A meta-synthesis of qualitative evidence was conducted which informed the empirical work. Semi-structured individual interviews were utilised. Study 1: Three AF patient sub-groups were interviewed; accepted (n=4), refused (n=4), or discontinued (n=3) warfarin. Study 2: Four physician sub-groups (n=4 each group) prescribing OAC to AF patients were interviewed: consultant cardiologists, consultant general physicians, general practitioners and cardiology registrars. Data was analysed using interpretative phenomenological analysis. Results: Study 1: Three over-arching themes comprised patients’ experiences: (1) the initial consultation, (2) life after the consultation, and (3) patients’ reflections. Patients commented on the relief and reassurance experienced during the consultation but they perceived the decision making process mostly led by the physician. Lack of education and take-home materials distributed during the initial consultation was highlighted. Patients who had experienced stroke themselves or were caregivers, were more receptive to education aimed towards stroke risk reduction rather than bleeding risk. Warfarin monitoring was challenging for patients, however some patients perceived it as beneficial as it served to enhance patient-physician relationship. Study 2: Two over-arching themes emerged from physicians’ experiences: (1) communicating information and (2) challenges with OAC prescription for AF. Physicians’ approach to the consultation style shifted through a continuum of compliance-adherence-concordance during the consultation. They aimed for concordance, however challenges such as time and the perceived patient trust in them as the expert, led to physicians adopting a paternalistic approach. Physicians also pointed out challenges associated with guideline adherence and the need to adopt a multi-disciplinary approach, where other health professionals could provide on-going education. Conclusion: This programme of work has illustrated the benefit of taking an in depth phenomenological approach to understanding the lived experience of the physician-patient consultation. Together with the meta-synthesis, this work has strengthened the evidence base and demonstrated that there is a need to target patients' and physicians' ability to communicate with each other in a comprehensible way.

Information and behavioural instruction along the health-care pathway:the perspective of people undergoing hernia repair surgery and the role of formal and informal information sources

Provision of information and behavioural instruction has been demonstrated to improve recovery after surgery. However, patients draw on a range of information sources and it is important to establish which sources patients use and how this influences perceptions and behaviour as they progress along the surgical pathway. In this qualitative, exploratory and longitudinal study, the use of information and instruction were explored from the perspective of people undergoing inguinal hernia repair surgery. Seven participants undergoing inguinal hernia repair surgery were interviewed using semi-structured interviews 2 weeks before surgery and 2 weeks and 4 months post-surgery. Nineteen interviews were conducted in total. Topic guides included sources of knowledge, reasons for help-seeking and opting for surgery and factors influencing return to activity. Data were analysed thematically according to Interpretative Phenomenological Analysis. Participants sought information from a range of sources, focusing on informal information sources before surgery and using information and instruction from health-care professionals post-surgery. This information influenced behaviours including deciding to undergo surgery, use of pain medication and returning to usual activity. Anxiety and help-seeking resulted when unexpected post-surgical events occurred such as extensive bruising. Findings were consistent with psychological and sociological theories. Overall, participants were positive about the information and instruction they received but expressed a desire for more timely information on post-operative adverse events.

Experiences of patients with age-related macular degeneration receiving anti-vascular endothelial growth factor therapy:a qualitative study

The societal cost for the average health authority in the United Kingdom for the care of wet age-related macular degeneration (AMD) has been suggested to be around £7.4 million. It is vital that the best possible care based on the best available evidence is provided to reduce the impact of AMD on patients' lives and the financial cost to the health-care system. This study explored the experiences of AMD patients treated with intravitreal ranibizumab injections. Three semistructured interviews were conducted with seven participants over the course of 18 months. Transcripts were analysed using interpretative phenomenological analysis. Analysis identified four themes: preparing for treatment, the treatment process, patient-provider communication, and results of treatment. Patient experiences highlighted the need to move away from the reliance on letters for information provision, and the need for clearer guidelines about when to cease AMD treatment. Interviews highlighted the need for the inclusion of rigorous qualitative evidence with experiential data in future good clinical practice guideline development for AMD. © The Author(s) 2013.

Exploring the experiences of nurses who care for children who have Acute Life Threatening Events (ALTE) in hospital

This thesis presents a program of work designed to explore and describe what the experience of caring for a child who has an Acute Life Threatening Event (ALTE) is like for the nurses. An ALTE may include a cardiac arrest, respiratory arrest or unplanned admission for a ward to the Paediatric Intensive Care unit. Using the MRC framework for the development of complex interventions, this information was then coupled with theory to develop the PREPARE and SUPPORT interventions. Given the wide-ranging and exploratory nature of this research, a pragmatic, mixed design approach was used to address the aims and objectives of the thesis. The mixed design approach included: a systematic literature review; international survey of practice; interviews with nurses and doctors using Interpretative Phenomenological Analysis; development, refinement and evaluation of interventions during a feasibility study. Two studies were identified through the systematic review which aimed to evaluate the effectiveness of debriefing. The studies did not provide evidence to support the use of these interventions within healthcare. The international survey of practice demonstrated hospitals were using interventions to both prepare and support nurses for these events. The preparatory interventions were clinically focused and the majority of the supportive interventions included a debrief. The interventions were not being evaluated for effectiveness. The interviews conducted with nurses and doctors provided insight into what that experience was like for the participants. Using the MRC framework, this evidence was coupled with theory to develop the PREPARE and SUPPORT interventions. A multidisciplinary working party used an iterative process to refine and evaluate the interventions and study procedures were explored through a feasibility study. The pragmatic, mixed design approach demonstrated how the empirical evidence was coupled with theory and clinical expertise to develop interventions for use within the healthcare environment.

Renegotiating sexual intimacy in the context of altered embodiment:the experiences of women with breast cancer and their male partners following mastectomy and reconstruction

OBJECTIVE: Breast cancer diagnosis and treatments can have a profound impact upon women's well-being, body image, and sexual functioning, but less is known about the relational context of their coping and the impact upon their intimate partners. Our study focuses upon couples' experiences of breast cancer surgery, and its impact on body image and sexual intimacy. METHOD: Utilizing a dyadic design, we conducted 8 semistructured individual interviews, with 4 long-term heterosexual couples, after the women had undergone mastectomy with reconstruction. Interviews explored both partners' experiences of diagnosis, decision-making, and experiences of body image and sexual intimacy. Interpretative phenomenological analysis (IPA) was adopted; this is a qualitative research approach characterized by in-depth analysis of the personal meaning of experiences. RESULTS: Findings illustrate the positive acceptance that partners may express toward their wives' postsurgical bodies. They illuminate ways in which gendered coping styles and normative sexual scripts may shape couples' negotiations of intimacy around "altered embodiment." Reciprocal communication styles were important for couples' coping. The management of expectations regarding breast reconstruction may also be helpful. CONCLUSIONS: The insights from the dyadic, multiple perspective design suggest that psychologists must situate the meaning of supportive relationships and other protective factors in the context of complex life events and histories, in order to understand and support people's developing responses to distress. (PsycINFO Database Record

The experiences of con sultations on oral anticoagula-tion for AF:the importance of qualitative research incardiovascular sciences

Objectives: Multiple-perspective qualitative designs can aid researchersto develop a more multifaceted account of a phenomenon and as aform of triangulation of data. Two interlinking studies aimed toexplore patients’ and physicians’ experiences of atrial fibrillation (AF)and warfarin.Methods: Audio-recorded semistructured individual interviews wereused. Study 1: Three AF patient subgroups were interviewed (n = 11);accepted, refused, or discontinued warfarin. Study 2: Four physiciansubgroups (n = 16): consultant cardiologists, consultant general physi-cians, general practitioners, and cardiology registrars. Data was ana-lyzed using interpretative phenomenological analysis, a qualitativemethodology.Results: Study 1: Three overarching themes comprised patients’ experi-ences: the initial consultation, life after the consultation, and patients’reflections. Patients commented on the reassurance experienced duringthe consultation, but they perceived the decision-making processmostly led by the physician. Lack of education and take-home materi-als during the initial consultation were highlighted. Patients’ uptake ofinformation was influenced by past experiences and knowledge ofstroke and/or bleeding. Study 2: Two overarching themes covered phy-sicians’ experiences: communicating information and challenges withwarfarin prescription for AF. Physicians’ approach to the consultationstyle shifted through a continuum of compliance-adherence-concor-dance during the consultation. Time and the perceived patient trust inthem as the expert led to physicians to adopt a paternalistic approach.Guideline adherence and the need to adopt a multidisciplinaryapproach were pointed out as current challenges.Conclusion: There is a need to target patients’ and physicians’ abilityto communicate with each other in a comprehensible way. This projecthas illustrated the benefit of using a qualitative approach to under-stand the lived experience of the physician–patient consultation.Disclosure of Interest: None declare

Self-cutting and prospective repetition of self-harm: studies of emergency department presentations in Ireland

Background Self-harm places an individual at increased risk of future self-harm and suicide, and indicates distress and maladaptive coping. Those who present to hospital with self-cutting form a significant minority of self-harm patients who are at increased risk of prospective repetition of self-harm and suicide compared with those presenting with intentional overdose. In addition to increased risk, there is emerging evidence of demographic, psychological, clinical, and social differences between those presenting with self-cutting and those presenting with overdose. Aim and Key Objectives The aim of the current doctoral work was to examine in detail the association between presenting with self-cutting and risk of prospective repetition. The objectives were: to identify evidence-based risk factors for repetition of self-harm among those presenting to emergency departments with self-harm; to compare demographic and presentation characteristics and prospective repetition across presentations of self-cutting only, self-cutting plus intentional overdose, and intentional overdose only; to compare prospective repetition and other characteristics within self-cutting presentations based on the type of treatment received; to compare self-cutting and intentional overdose patients on psychological risk and protective factors for repetition; and to examine the lived experience of engaging in repeated overdose and self-cutting. Methods The current doctoral work used a mixed-methods approach and is comprised of one systematic review and four empirical studies. The empirical studies were two registry-based prospective studies of Irish hospital presentations of self-harm, one prospective structured interview study, and one qualitative study using Interpretative Phenomenological Analysis. Results The systematic review identified several consistent and emerging risk factors for repetition of self-harm, compared to which self-cutting had a medium-sized effect. The registry studies demonstrated that the involvement of self-cutting, particularly less medically severe selfcutting, confers an increased risk of 1-month and 12-month repetition among Irish index selfharm presentations. The structured psychological study detected higher hopelessness and lower non-reactivity to inner experience among those presenting with self-cutting, and higher depression among those who repeated self-harm. Repeaters had lower baseline levels of protective psychological factors than non-repeaters and continued to have higher depression and hopelessness at follow-up. Finally, the qualitative study indicated that self-harm is a purposeful action taken in response to an overwhelming situation and is evaluated afterwards in terms of personal and social effects. Chosen method of self-harm seemed to be influenced by the desired outcome of the self-harm act, capability, accessibility and previous experience. Conclusion Despite limitations in terms of recruitment rates, the work presented in this thesis is innovative in examining the issue of the association between self-cutting and repetition from multiple perspectives. No one factor can reliably predict all repetition but self-cutting represents one consistent and easily detected risk factor for repetition. Those who present with self-cutting exhibit significant differences on demographic, clinical, and psychological variables compared with those presenting with intentional overdose, and seem to exhibit a more vulnerable profile. However, those who present with self-cutting do not form a discrete or homogenous group, and self-harm methods and levels of suicidal intent are liable to fluctuate over time.

The spiritual and professional impact of stillbirth

Stillbirth is without question one of the most devastating experiences of grief for parents and families. The death of a baby is also a distressing experience for healthcare professionals who share hopes of a live healthy baby at the end of pregnancy. It is a sad reality however, that in Ireland one in 238 babies will die before birth. The creation and nurture of new life in pregnancy is a spiritual experience as a new baby is at the same time experienced and anticipated. There is little in the published literature concerning the spiritual impact of stillbirth on healthcare chaplains who are the main providers of spiritual care for parents and staff colleagues in Irish maternity units. In addition there are few qualitative studies that explore the impact of stillbirth on consultant obstetricians and no published studies on the spiritual impact of stillbirth on bereaved parents. This study explored the spiritual and professional impact of stillbirth on Irish maternity healthcare chaplains, consultant obstetricians and bereaved parents. Following an overall review of spiritual care provision following stillbirth in the Irish maternity services, thematic analysis was used in the first phase of the study following in-depth interviews with maternity healthcare chaplains. Interpretative Phenomenological Analysis was used in the second and third phases with consultant obstetricians and bereaved parents respectively. The data from both maternity healthcare chaplains and consultant obstetricians revealed that stillbirth posed immense personal, spiritual and professional challenges. Chaplains expressed the spiritual and professional impact of stillbirth in terms of perception of their role, suffering, doubt and presence as they provided care for bereaved parents. A review of spiritual care provision in the Irish maternity services revealed a diversity of practice. The data from consultant obstetricians identified considerable personal, professional and spiritual impact following stillbirth that was identified in superordinate themes of human response to stillbirth, weight of professional responsibility, conflict of personal faith and incongruence between personal faith and professional practice. Data from bereaved parents revealed that stillbirth was spiritually challenging and all parents expressed that stillbirth posed considerable challenge to their faith/ belief structure. The parents of only three babies felt that their spiritual needs were adequately addressed while in hospital. The data had six superordinate themes of searching for meaning, maintaining hope, importance of personhood, protective care, questioning core beliefs and relationships. Other findings from the data from bereaved parents outlined the importance of environment of care and communication. This study has revealed the immense impact of stillbirth on healthcare chaplains, consultant obstetricians and most especially the spiritual impact for bereaved parents. Recommendations are made for improvements in clinical and spiritual care for bereaved parents following stillbirth and for staff wellbeing and support initiatives. Further research areas are recommended in the areas of spiritual care, theological reflection, bereavement care, post-mortem consent procedures and staff wellbeing.

Life Experiences of Youth Who Were Born with HIV Infection in Puerto Rico: The Voices of Young Survivors

The effectiveness of antiretroviral therapy (ART) transformed the pediatric HIV epidemic. The disease changed significantly over the course of three decades: while early in the epidemic it was almost always fatal, it has become a chronic condition. This study examined how perinatally-infected youth experience the impact of HIV in their lives. A qualitative study using interpretative phenomenological analysis (IPA) was conducted. Twenty in-depth interviews were carried out among 12 women and 8 men aged 18 to 30 years in Puerto Rico. These were conducted in Spanish, audio-recorded, transcribed and translated into English. While narrating their experiences, participants were interpreting what the situation meant to them and how they make sense of it. Three topics emerged: (1) perception and response to treatment and illness, particularly their lived experiences with ART; (2) disclosure experiences; and (3) family matters. Most participants challenged their therapy, in most cases to force their caregivers to disclose their status. Problems with adherence were attributed to busy schedules or forgetfulness. Participants experienced the disfiguring adverse effects of ART, which they endured for years without being informed that ART was the cause of these. Participants’ experiences with disclosure demonstrated the importance of validating them as individuals capable of managing their health. The paternalistic approach of withholding their diagnosis to spare them suffering resulted in increased anxiety. Participants acknowledged the difficulties of revealing their HIV status to their partners. They referred to family and friends as essential in coping with HIV. However, some encountered discrimination and stigma within their families. Participants who had suffered the loss of their parents found other parental figures such as adoptive parents or other family members. Most participants expressed a desire to have children. Perinatally HIV-infected youth will require health services for the rest of their lives. The adult health care into which they transition should consider their needs and journey. Services should consider including family members. This study underscores the need for improved access to mental health services. It is also essential to transcend medical treatment and develop a broader perspective of health care. Health care services should include reproductive decision-making counselling services.

Governmentality gone wild: How the separation of sex workers from 'communities' contributes to violence against sex workers

Sex workers are members of our communities, whether they are local or national communities. In law, mainstream media representations, and research sex workers are positioned as outside of or in opposition to communities. Even within marginalized communities sex workers are excluded when appeals to respectability politics are made. In this thesis I analyze three analytic sites from three areas of social life. The first chapter performs a textual analysis of The Bedford Decision (2013) and the resulting Protection of Communities and Exploited Persons Act (2014) as an examination of law. The second chapter is an analysis of filmic discourse on community, sex workers, and violence in the mainstream film London Road (2015) as an examination of mainstream media. The third chapter draws upon empirical research, i.e. in-depth interviews with three current and former sex workers in Ottawa, Canada and analyzes the transcripts using interpretative phenomenological analysis (IPA) to center how sex workers’ understanding of their work, community, and the laws and policies that are supposed govern and protect them. In my preface and conclusion I discuss some of the ethical dilemmas I encountered while conducting this research. My findings suggest that sex workers are being positioned and understood as outside of communities in ways that contribute to violence against sex workers. The implications of this research suggest that people who speak in the name of communities—communities in the sense of local neighborhood communities, activist communities, and national communities—need to recognize that sex workers are part of their communities and be accountable to ensuring they are treated as members. Researchers who conduct research on sex work and sex workers need to be accountable to their participants and the impacts their research may have on laws and policies. Sex workers are an over-researched population yet their voices are largely misappropriated or silenced in popular research and policy debates.

Exploring Children’s Experiences of Participating in a Mindfulness Intervention

In recent years there has been a rapid growth in mindfulness practices being applied to improve the health and wellbeing of those who participate. As a result mindfulness-based interventions (MBI’s) have been applied in medical and educational settings. The purpose of this piece of research is to explore children’s understanding of mindfulness following their involvement in a 12 week mindfulness based intervention. The research provides an in-depth explorative interpretation of both the pupils and the mindfulness practitioner’s experience of mindfulness. Interpretative phenomenological analysis (IPA) was employed as a method of analysis which resulted in 3 master themes being identified. The themes include ‘physiological activities promote mindfulness’, ‘cognitive elements’ and ‘states of being’. Interpretation of the findings considered participants experiences in relation to the 7 attitudinal foundations as proposed by Kabat–Zinn (1990). A number of similarities between the participants were evident, as represented in the 3 master themes. However the degree to which each individual participant expressed their awareness and understating of mindfulness varied. Therefore the findings indicated that the participants were in the process of developing their understanding of mindfulness which differed between them on a conceptual level. This study is considered of relevance for those in the profession of Educational Psychology and those interested in the application of mindfulness-based interventions to improve the health and wellbeing outcomes for children and young people. The research has made a distinctive contribution within the field of mindfulness in light of the findings. Recommendations are made to inform the practices of Educational Psychology Services with reference to the work of Educational Psychologists. Suggestions for further research have also been made to aid the direction of future research.

A meditation on boredom: Re-appraising its value through introspective phenomenology

Boredom is almost universally regarded as a dysphoric mental state, characterised by features such as disengagement and low arousal. However, in certain quarters (e.g., Zen Buddhism), boredom is seen as potentially having great value and even importance. The current study sought to explore boredom through a case study involving introspective phenomenology. The author created conditions in which he would experience boredom for an hour, and recorded his experience in real-time using a variant of the Experiencing Sampling Method. The data were analysed using an adaptation of Interpretative Phenomenological Analysis. The results indicated that the state of boredom contained three main sources of value: (a) altered perception of time; (b) awakened curiosity about the environment; and (c) exploration of self. Consequently, the paper offers a re-appraisal of boredom, suggesting that rather than necessarily being a negative state, if engaged with, boredom has the potential to be a positive and rewarding experience.

Concerns and Expectations of Students Participating in Study Abroad Programs: Blogging to Reveal the Dynamic Student Voice

Study abroad programmes (SAP) have become increasingly popular with university students and within academia. They are often seen as an experiential opportunity to expand student learning and development, including increases in global, international, and intercultural competences. However, despite the increasing popularity of and participation in study abroad programmes, many student concerns and uncertainties remain. This research investigates initial pre-departure concerns and apprehensions of students undertaking a one-semester study abroad programme and uses these as context for an examination of violated expectations of students during their programme. The research uses interpretative phenomenological analysis to interpret data collected from regularly-updated blogs composed by students throughout their SAP experience. The process of using blogs to collect data is less formalised than many other approaches of interpretative phenomenological analysis, enabling ‘in the moment’ feedback during the SAP and lending greater depth to the understanding of student perceptions.

The Multi-Faceted Experience of Empathy in Intellectual Disability Settings: An IPA Study

This research thesis explored the concept of empathy. The specific purpose was to further understand the idea of empathy in relation to the experience of male support workers who provide residential care to adults with intellectual disabilities (ID) and challenging behaviour. The thesis aimed to provide some insights into how support workers develop and extract meaning from their experiences of relationships with clients and the impact of this on their own self-care, namely, self-compassion. Since personal accounts of experience were required, a qualitative methodology was employed, Interpretative Phenomenological Analysis (IPA) (Smith, 2004). This methodology was selected as it allows for the exploration and interpretation of idiographic lived experience and meaning making. 8 experienced support workers were interviewed using a semi structured interview. Four superordinate themes emerged from the data. These included: 1. Making sense of the others inner world; 2. Processes that enhance empathic practice; 3. Tensions and conflicts, and 4. Management of distressing feelings. Differing accounts of interpreting the needs of clients were identified which helped participants understand, make sense of their interpersonal experience and participate in their role. These included utilising academic knowledge and senses, particularly sight and hearing, which were seemingly complemented by a level of reflective practice. Additionally, to make sense of the experience of a client, they appeared to put themselves in their position, suggesting a form of empathy. Participants appeared to engage in a process of reflection on their relationships with clients, which helped them think about what they had learned about the person’s needs, moreover, this process enabled them to identify some of their own responses and feelings. However, participants seemed to struggle to recognise the occurrence or impact of distressing emotional experience and to express their feelings, possibly in response to a deep sense of responsibility and fear of transferring emotional distress to others. This dilemma of holding two potentially conflicting views of experience seemed to inhibit self-compassion. Although not specifically testing theories of empathy, from the overall findings, it could be suggested that empathy may be a dynamic, transient process that is influenced by reflexivity, values and context. The context in which participants discussed their practice, and situated within their accounts, suggested a sense of confusion and uncertainty. Consequently, it is suggested this impacted on how participants understood and related to clients, and to themselves. There were some specific implications for Counselling Psychology practice, mostly concerning training and supervision. These included recommendations for staff training and supervision, systemic organisational intervention, policy development, recommendations for revisions to models of specialist care frameworks and clinical training.

Mastectomia e corporalidade: impacto da cirurgia estético-reconstrutiva

Dissertação de Mestrado apresentada no Instituto Superior de Psicologia Aplicada para obtenção de grau de Mestre na especialidade de Psicologia Clínica,