An interpretative phenomenological analysis of the meaning of work to women living with breast cancer.

OBJECTIVE: Work is an important aspect of everyday life. This remains true for those living with and beyond cancer. Less is known about how the meaning of work may change over the cancer journey, the needs of the individual in response to changes and how healthcare professionals and employing organisations can meet these needs. The aim of this study was to explore the lived experience of work after treatment for breast cancer in a group of professional working women within the UK. METHODS: This article presents an Interpretative Phenomenological Analysis (IPA) of the experiences of 15 professional women diagnosed with breast cancer. RESULTS: We discuss these women's journey from (1) rethinking the meaning of work to (2) making decisions about work ability and advice on work to (3) transitioning back in to the workplace and the value of continued engagement with employer. DISCUSSION: The findings from this study demonstrate the complex interplay between living with cancer, treatment decisions and work. This study highlights two key areas for inclusion in practice: (1) support from Healthcare Professionals and judgements of functional ability and work ability and (2) the role of line managers in managing cancer and work.

Parents' understanding and motivation to take part in a randomized controlled trial in the field of adolescent mental health: a qualitative study.

BACKGROUND: Little is known about why parents agree to take part in randomized controlled trials for adolescent mental health. This study aimed to investigate parents' perspectives on participating in a trial for psychological treatment of depression. The study explored parents' motivations, understanding of the trial and perspectives on the acceptability of the trial. METHODS: Sixty-five parents took part in this qualitative study. Their adolescent children had been randomly allocated to one of three active psychological treatments for depression as part of the IMPACT trial and were interviewed about their experiences of participating in the study. Semi-structured interviews were analysed using framework analysis. RESULTS: For seven of the sixty-five parents, their experience of taking part in the trial was not covered in their interview so they were excluded from the analysis. The analysis was therefore based on the data from the parents of 58 adolescents taking part in the trial. The most commonly cited motivation for taking part in the study reported by parents was a desire to help others going through similar difficulties. Parents generally reported finding trial participation acceptable, although there were aspects that some reported finding less acceptable, including randomization and the burden of research assessments. Others spoke positively about the experience of trial participation and found it enjoyable or even therapeutic. Importantly, some did not appear to have a good understanding of the trial design, including randomization and treatment allocation. CONCLUSIONS: This study indicates that trial participation can be a positive experience for parents, yet it raises concerns about how trialists can ensure that consent is fully informed, given that some parents appeared to have a poor understanding of the trial. Future studies should seek to explore how communication with trial participants can be improved, to ensure that trial participation is fully informed. Patient and public involvement will be crucial in ensuring this communication is accessible to stakeholders. TRIAL REGISTRATION: ISRCTN registry ISRCTN83033550 . Registered on 15 October 2009.

"It's like having an evil twin": an interpretative phenomenological analysis of the lifeworld of a person with Parkinson's disease.

BACKGROUND: This paper offers an understanding of the lifeworld of a person with Parkinson's Disease derived from interpretative phenomenological analysis (IPA). AIMS: The paper has two main aims: firstly, to demonstrate how a focus on individual experience chimes with and can inform current ideas of a more personalised humanised form of healthcare for people living with Parkinson's disease; and secondly, to demonstrate how an IPA study can illuminate particularity whilst being able to make, albeit cautiously, more general knowledge claims that can inform wider caring practices. METHODS: It achieves these aims through the detailed description and interpretation of one person's experience of living with Parkinson's disease using the IPA approach. RESULTS: Three analytic themes point to how the various constituents of the lifeworld, such as embodiment, selfhood, temporality and relationality are made manifest. These enable the IPA researcher to make well-judged inferences, which can have value beyond the individual case. CONCLUSIONS: A key feature of IPA is its commitment to an idiographic approach that recognises the value of understanding a situated experience from the perspective of a particular person or persons.

Differential Subjective Experiences in Learners and Non-learners in Frontal Alpha Neurofeedback: Piloting a Mixed-Method Approach.

In a neurofeedback paradigm, trainees learn to willfully control their brain dynamics. How this is realized remains an open question. We evaluate the hypothesis that learning success is associated with a specific phenomenology. To address this proposal, we combined quantitative and qualitative analyses of a short neurofeedback training (NFT) session during which participants enhanced mid-frontal alpha power and were then subsequently interviewed about their experiences. We analyzed the electrophysiological data to determine learning success and classify trainees as learners and non-learners. The subjective experiences differed between the two groups and are best described along a trying-sensing continuum, with non-learners engaging effortfully with the task (e.g., "I will it [the bar] to move") whereas learners reported more sensing of their inner (e.g., "Something inside my stomach") and outer environment (e.g., "I was aware of the sound of the beeps"). In the process of piloting this mixed-method approach, we developed a classification system for the verbal reports. This system provides an explicit analytic framework which might guide future studies that aim to investigate the association between subjective experiences and NFT protocols.

'I know I'm not invincible': An interpretative phenomenological analysis of thyroid cancer in young people.

OBJECTIVE: Thyroid cancer is one of the most common cancers affecting young people and carries an excellent prognosis. Little is known about the psychosocial issues that face young people diagnosed with a treatable cancer. This study explored how young people experienced diagnosis, treatment, and how they made sense of an experience which challenged their views on what it means to have cancer. METHOD: Semi-structured interviews were conducted with eight young people diagnosed with either papillary or follicular thyroid cancer, and analysed with interpretative phenomenological analysis (IPA). RESULTS: Two inter-related aspects of their experience are discussed: (1) the range of feelings and emotions experienced including feeling disregarded, vulnerability, shock and isolation; (2) how they made sense of and ascribed meaning to their experience in the light of the unique nature of their cancer. A thread running throughout the findings highlights that this was a disruptive biographical experience. CONCLUSIONS: Young people experienced a loss of youthful immunity which contrasted with a sense of growth and shift in life perspective. Having a highly treatable cancer was helpful in aiding them to reframe their situation positively but at the same time left them feeling dismissed over a lack of recognition that they had cancer. The young peoples' experiences point to a need for increased understanding of this rare cancer, more effective communication from health care professionals and a greater understanding of the experiential impact of this disease on young people. Suggestions to improve the service provision to this patient group are provided. Statement of contribution What is already known on this subject? Differentiated thyroid cancer has an excellent prognosis. Quality of life of thyroid cancer has marginally been explored in the literature. Little is known on the support needs of young people diagnosed with thyroid cancer. What does this study add? Increased understanding of how young people make sense and cope with thyroid cancer despite the lack of support resources. Addressing illness perceptions through improved information support may aid coping and adjustment. Insight into the needs of young people diagnosed with thyroid cancer and recommendations on service improvements.

'Shutting the World Out': An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.

BACKGROUND: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19-32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10). METHOD: Five fathers participated in semi-structured interviews which were subjected to interpretative phenomenological analysis (Smith, Flowers and Larkin, 2009, Interpretative Phenomenological Analysis: Theory, Method, and Research. London: Sage). RESULTS: The final thematic structure comprises four inter-related themes. They demonstrate a high degree of concern for children's well-being; the joy adult children confers on their father's lives as well as the difficulties men experience in response to the limited opportunities available to their offspring. Importantly findings also illustrate the way in which men struggle to contend with painful emotions. CONCLUSIONS: Societal conceptions of masculinity, fatherhood and disability necessarily influence the way fathers experience the world (Yarwood, Fathering, 9, 2011, 150). It is imperative that service providers recognize the particular challenges faced by fathers, seeking ways to better engage and support them.

"Did I bring it on myself?" An exploratory study of the beliefs that adolescents referred to mental health services have about the causes of their depression.

The causal beliefs which adults have regarding their mental health difficulties have been linked to help-seeking behaviour, treatment preferences, and the outcome of therapy; yet, the topic remains a relatively unexplored one in the adolescent literature. This exploratory study aims to explore the causal beliefs regarding depression among a sample of clinically referred adolescents. Seventy seven adolescents, aged between 11 and 17, all diagnosed with moderate to severe depression, were interviewed using a semi-structured interview schedule, at the beginning of their participation in a randomised controlled trial. Data were analysed qualitatively using framework analysis. The study identified three themes related to causal beliefs: (1) bewilderment about why they were depressed; (2) depression as a result of rejection, victimisation, and stress; and (3) something inside is to blame. Although some adolescents struggled to identify the causes of their depression, many identified stressful life experiences as the cause of their current depression. They also tended to emphasise their own negative ways of interpreting those events, and some believed that their depression was caused by something inside them. Adolescents' causal beliefs are likely to have implications for the way they seek help and engage in treatment, making it important to understand how adolescents understand their difficulties.

'I'm worried about getting water in the holes in my head': A phenomenological psychology case study of the experience of undergoing deep brain stimulation surgery for Parkinson's disease.

OBJECTIVES: Deep brain stimulation (DBS) is a form of biotechnological surgery which has had considerable success for the motor improvement of Parkinson's disease and related disorders. Paradoxically, this observed motor improvement is not matched with improved psychosocial adjustment. This study contributes to a small but growing body of research aiming to understand this paradox. We conclude by discussing these aspects from a phenomenological and health psychology understanding of decision-making, human affectivity, and embodiment. DESIGN: A hermeneutic phenomenological case study. METHODS: Semi-structured interviews with one woman with Parkinson's disease were carried out paying particular attention to (1) how the decision to have the procedure was made and (2) the affective experience in the time periods immediately prior to the procedure, shortly after and 1 month later. RESULTS: The thematic structure derived from the hermeneutic phenomenological analysis comprises the following experiential aspects: Making the decision: 'I was feeling rather at a dead end with my Parkinson's'; Shifting emotions and feelings: 'Terrified, excited, disappointed, overjoyed'; Embodied meaning: 'This extraordinary procedure where they were going to drill holes in my head'. CONCLUSIONS: This research has elucidated the complexity of decision-making, the emotional landscape, and specific bodily nature of the experience of DBS. It has suggested implications for practice informed by both existential-phenomenological theory and health psychology. Statement of contribution What is already known on this subject? Deep brain stimulation (DBS) is a newly developed form of biotechnological surgery and research indicates a mismatch between motor success and psychosocial adjustment. Most studies focuses on life post-DBS and there is relatively little research on how people make the decision to have the procedure, what their experience is of undergoing it including its emotional aspects. What does this study add? This study demonstrates that making decisions with respect to health and illness is complex and best understood as a form of embodied cognition. Findings indicate that the experience of undergoing DBS surgery is one of multiple emotions, especially fear and feelings of 'unhomelikeness'. This study highlights the relevance of a lifeworld, people-centered and humanizing approach to helping health care professionals support people through an illness/treatment trajectory.

"Just like talking to someone about like shit in your life and stuff, and they help you": Hopes and expectations for therapy among depressed adolescents.

OBJECTIVE: To explore hopes and expectations for therapy among a clinical population of depressed adolescents. METHOD: As part of a randomized clinical trial, 77 adolescents aged 11-17, with moderate to severe depression, were interviewed using a semi-structured interview schedule. The interviews were analysed qualitatively using framework analysis. RESULTS: The findings are reported around five themes: "the difficulty of imagining what will happen in therapy," "the 'talking cure,'" "the therapist as doctor," "therapy as a relationship," and "regaining the old self or developing new capacities." CONCLUSIONS: Differing expectations are likely to have implications for the way young people engage with treatment, and failure to identify these expectations may lead to a risk of treatment breakdown.

Beyond a diagnosis: The experience of depression among clinically-referred adolescents.

Policy-makers have identified an urgent need to improve our ability to detect and diagnose depression in adolescents. This study aims to explore the lived experience of depression in clinically referred adolescents. 77 adolescents, aged between 11 and 17 with moderate to severe depression, were interviewed as part of a randomised controlled trial, using the Expectations of Therapy Interview. Data were analysed qualitatively using framework analysis, with a focus on how the adolescents spoke about their depression. The study identified five themes: 1) Misery, despair and tears; 2) Anger and violence towards self and others; 3) A bleak view of everything; 4) Isolation and cutting off from the world; and 5) The impact on education. Researchers and policy-makers need to develop an understanding of depression grounded in the experiences of adolescents to improve detection and diagnosis of depression.

'Well the Future, that is Difficult': A Hermeneutic Phenomenological Analysis Exploring the Maternal Experience of Parenting a Young Adult with a Developmental Disability.

BACKGROUND: The predominant focus of extant literature exploring maternal experience of developmental disability has been stress, adaptation, efficacy of interventions and the burden of care. Most studies involve mothers of children, with scant attention given to what life is like later. This study qualitatively explores the experience of mothers of young adults (aged 19-28). MATERIALS AND METHODS: Semi-structured interviews conducted with six women aged 48-60 were transcribed and analysed using interpretative phenomenological analysis. RESULTS: Three themes illustrate how mothers are confronted with their adult children's continuing need for support and how a lack of trust in social care creates anxiety about the future, increasing awareness of mortality. CONCLUSIONS: Vulnerability represents a useful concept for understanding these findings theoretically. Galvin & Todres' (2013) conceptual framework for the humanization of care provides the opportunity to prioritize the needs of individuals by highlighting dimensions of existence which confer meaning.

The personal experience of parenting a child with juvenile Huntington's disease: perceptions across Europe.

The study reported here presents a detailed description of what it is like to parent a child with juvenile Huntington's disease in families across four European countries. Its primary aim was to develop and extend findings from a previous UK study. The study recruited parents from four European countries: Holland, Italy, Poland and Sweden,. A secondary aim was to see the extent to which the findings from the UK study were repeated across Europe and the degree of commonality or divergence across the different countries. Fourteen parents who were the primary caregiver took part in a semistructured interview. These were analyzed using an established qualitative methodology, interpretative phenomenological analysis. Five analytic themes were derived from the analysis: the early signs of something wrong; parental understanding of juvenile Huntington's disease; living with the disease; other people's knowledge and understanding; and need for support. These are discussed in light of the considerable convergence between the experiences of families in the United Kingdom and elsewhere in Europe.

"Her energy kind of went into a different place": a qualitative study examining supervisors' experience of promoting reflexive learning in students.

For family therapists in training, a key learning outcome is the development of reflexive abilities. This study explores the experience of three experienced training supervisors as they address this learning outcome with students. Transcripts of semi-structured interviews were analyzed using interpretative phenomenological analysis. The Supervisory Relationship emerged as a single overarching theme that contained and contextualized three further themes: Promoting Learning, Dimensions of Power, and The Self of the Supervisor. One theme is reported here, Promoting Learning, with an illustrative example of experiential learning in a student that demonstrates the overriding significance of The Supervisory Relationship. The findings are discussed in the context of current literature and research regarding supervision and training. This study adds richness and detail to material published on supervisory experience, and documents supervisory "micro-skills" relevant to the development of reflexive abilities in students.

Banking on brains: insights of brain donor relatives and friends from an experiential perspective.

Brain donation is critical to understand the pathological causes of neurodegenerative diseases. Increasing levels of donation requires an understanding of those factors that both encourage and deter donation. At present, there are few studies of how people understand, feel and decide about brain donation for scientific research. This qualitative experiential study contributes to the growing literature on brain donation through its specific focus on how the donation process is experienced from the perspectives of family members and friends. Nineteen semi-structured interviews were analysed using a phenomenologically informed thematic analysis. Four themes were derived from the analysis, three of which are described in detail: Making the decision to donate; a personal perspective on the donation process; the significance of the brain; beliefs about brain donation. In particular, the thematic analysis highlights the variation of individual decision making and the emotions and reasons underpinning such decisions. Key conclusions include the importance of integrated practice amongst relevant healthcare professionals as well as the need for supportive and informed communication. Also, in light of the finding that the brain assumed no special significance for most participants, the value of the distinction between brain donation for research purposes and organ transplantation is questioned.

Women, anger, and aggression: an interpretative phenomenological analysis.

This study reports a qualitative phenomenological investigation of anger and anger-related aggression in the context of the lives of individual women. Semistructured interviews with five women are analyzed using interpretative phenomenological analysis. This inductive approach aims to capture the richness and complexity of the lived experience of emotional life. In particular, it draws attention to the context-dependent and relational dimension of angry feelings and aggressive behavior. Three analytic themes are presented here: the subjective experience of anger, which includes the perceptual confusion and bodily change felt by the women when angry, crying, and the presence of multiple emotions; the forms and contexts of aggression, paying particular attention to the range of aggressive strategies used; and anger as moral judgment, in particular perceptions of injustice and unfairness. The authors conclude by examining the analytic observations in light of phenomenological thinking.

The impact of Juvenile Huntington's Disease on the family: the case of a rare childhood condition.

There has been little research into the impact of Juvenile Huntington's Disease (JHD) on the family, and the issues facing this group are poorly understood. The study reported here is part of larger project that aimed to address this. Ten semi-structured interviews with the main carer were carried out, and were analysed using Interpretative Phenomenological Analysis (IPA). This article reports three themes arising from the study relating to the psychosocial impact of JHD on the family: (1) dealing with something so different; (2) lack of understanding (3) isolation. This information is useful in developing appropriate services for families affected by JHD, as well as being of relevance to other childhood conditions.

Caring for a child with Juvenile Huntington's Disease: helpful and unhelpful support.

There has been little research into the psychosocial impact of Juvenile Huntington's Disease on the child and family. This study investigates the social and health care needs of those affected by Juvenile Huntington's Disease. Ten semi-structured interviews with carers were analysed using the qualitative methodology interpretative phenomenological analysis. This article reports three themes on the social support that families received. The first theme describes how parents perceived the support that they received from family and friends. The second and third themes describe how parents perceived helpful and unhelpful experiences of professional support. This corresponds to the view that social support is a 'double-edged sword', which can both ameliorate the effects of, and be a source of, stress. This information should be useful to those supporting the family of a child with a chronic or terminal illness.

'I was like a wild wild person': understanding feelings of anger using interpretative phenomenological analysis.

This paper is concerned with illuminating how emotion (anger) and emotion-related phenomena such as feelings, thoughts and expressions appear to the individual person. In particular, it focuses on the role of feelings in emotion experience. It does this through the qualitative analysis of interview material from a single person case study using interpretative phenomenological analysis. The paper examines how the participant feels and experiences anger, the defining characteristics of anger episodes, and how the typical pattern of these episodes is disrupted by life-changes. The findings are examined in light of phenomenological ideas and the utility of these ideas for psychology's understanding of emotion argued for.

I feel like a scrambled egg in my head: an idiographic case study of meaning making and anger using interpretative phenomenological analysis.

What does it feel like when one's meaning making is impoverished and threatens to break down? The aim of this study is to show how meaning making is achieved in the context of one's life and how this achievement is often a struggle for the individual. The study reports data from semi-structured interviews with a female participant, which was analysed using interpretative phenomenological analysis (IPA). This paper examines how cultural discourses and conventions are experienced and given meaning by the individual. First, the analysis demonstrates how dominant discourses are used to explain anger and aggression. These include hormones, alcohol, and the influence of past relationships on present action. Second, it examines how the participant's meaning making is often ambiguous and confused, and how she variously accepts and challenges available meanings. Finally, the analysis demonstrates how meaning making can break down and the consequences of this for the individual's sense of self.

Online data collection from video game players: methodological issues.

The paper outlines the advantages and disadvantages of using the Internet to collect data concerning both online and offline gamers. Drawing from experience of a number of studies carried out online by the authors and by reviewing the available literature, the authors discuss the main issues concerning data collected from video game players. The paper examines a number of areas, including recruiting and utilizing participants, validity, suitable methods of data collection (i.e., questionnaire studies, online tests, participant observation, online interviews), and ethical issues. It is concluded that online research methods can be a useful way of examining the psychosocial aspects of video game playing.