The personal experience of juvenile Huntington's disease: an interpretative phenomenological analysis of parents' accounts of the primary features of a rare genetic condition

There has been a paucity of research into the psychosocial impact of juvenile Huntington's disease (JHD) on the child and the family. The study reported here is part of larger project that aimed to address this and investigate the social and health care needs of those affected by JHD. Ten semistructured interviews with the main caregiver(s) were carried out and were analyzed using the qualitative methodology interpretative phenomenological analysis. The main themes arising from the analysis are reported here: first becoming aware something is wrong; physical symptoms; speech and communication difficulties; behavioral problems; a slow but relentless process. These are discussed in relation to extant literature. We hope the article will be helpful to clinicians working with families where a child is affected by JHD and also contribute to the general literature on understanding symptoms in childhood illness.     

Informed consent and psychotherapy: An interpretative phenomenological analysis of therapists' views

Objectives . To examine the issue of informed consent and how this is translated into clinical psychotherapy practice. Design . A qualitative approach was taken in which interviews were used to produce data. Methods . Nine clinical psychologists with specialist psychodynamic training took part in the research. Participants were interviewed using a semi‐structured interview schedule. The interviews were transcribed and the data were analysed using interpretative phenomenological analysis. Results . The tensions between balancing the requirements of informed consent with psychodynamic practice were explored and the notion of whether clients can truly be ‘informed’ prior to undertaking psychodynamic therapy was raised. Four major themes emerged from the data: ‘psychodynamic therapy as risky’; ‘balancing expectations between therapist and client’; ‘psychodynamic therapy as unique and experiential’; and ‘informed consent as complex: a linguistic conceit?’ Conclusions . This research has been valuable in identifying therapists' views and experiences of how the issue of informed consent is addressed in therapeutic practice. In the light of the findings of this research, future investigation would benefit from more detailed examination of the process of providing informed consent, examining whether, and how often, consent issues are revisited by therapists. More research focusing on the views and need of clients are also warranted.     

Voice hearing within the context of hearers' social worlds: An interpretative phenomenological analysis

Objectives. Research has found relational qualities of power and intimacy to exist within hearer‐voice interactions. The present study aimed to provide a deeper understanding of the interpersonal context of voice hearing by exploring participants' relationships with their voices and other people in their lives. Design. This research was designed in consultation with service users and employed a qualitative, phenomenological, and idiographic design using semi‐structured interviews. Method. Ten participants, recruited via mental health services, and who reported hearing voices in the previous week, completed the interviews. These were transcribed verbatim and analysed using interpretative phenomenological analysis. Results. Five themes resulted from the analysis. Theme 1: ‘person and voice’ demonstrated that participants' voices often reflected the identity, but not always the quality of social acquaintances. Theme 2: ‘voices changing and confirming relationship with the self’ explored the impact of voice hearing in producing an inferior sense‐of‐self in comparison to others. Theme 3: ‘a battle for control’ centred on issues of control and a dilemma of independence within voice relationships. Theme 4: ‘friendships facilitating the ability to cope’ and theme 5: ‘voices creating distance in social relationships’ explored experiences of social relationships within the context of voice hearing, and highlighted the impact of social isolation for voice hearers. Conclusions. The study demonstrated the potential role of qualitative research in developing theories of voice hearing. It extended previous research by highlighting the interface between voices and the social world of the hearer, including reciprocal influences of social relationships on voices and coping. Improving voice hearers' sense‐of‐self may be a key factor in reducing the distress caused by voices.     

Impact of the QOF and the NICE guideline in the diagnosis andmanagement of depression: a qualitative study

Background

The National Institute for Health and clinical Excellence (NICE) depression guideline (2004) and the updated Quality and Outcomes Framework (QOF) ( 2006) in general practice have introduced the concepts of screening severity assessment, for example using the Patient Health Questionnaire 9 (PHQ-9), and ‘stepped care’ for depression.

Aim

To explore primary care practitioner perspectives on the clinical utility of the NICE guideline and the impact of the QOF on diagnosis and management of depression in routine practice.

Design and setting

Qualitative study using focus groups from four multidisciplinary practice teams with diverse populations in south Yorkshire.

Method

Four focus groups were conducted, using a topic guide and audiotaping. There were 38 participants: GPs, nurses, doctors in training, mental health workers, and a manager. Data analysis was iterative and thematic.

Results

The NICE guideline, with its embedded principles of holism and evidence-based practice, was viewed positively but its impact was compromised by resource and practitioner barriers to implementation. The perceived imposition of the screening questions and severity assessments (PHQ-9) with no responsive training had required practitioners to work hard to minimise negative impacts on their work, for example: constantly adapting consultations to tick boxes; avoiding triggering open displays of distress without the time to offer appropriate care; positively managing how their patients were labelled. Further confusion was experienced around the evolving content of psychological interventions for depression.

Conclusion

Organisational barriers to the implementation of the NICE guideline and the limited scope of the QOF highlight the need for policy makers to work more effectively with the complex realities of general practice in order to systematically improve the quality and delivery of ‘managed’ care for depression.     

An interpretative phenomenological analysis of participation in a pro-anorexia internet site and its relationship with disordered eating

Pro-anorexia Internet sites aim to promote, support and discuss anorexia nervosa. Media coverage has raised concerns that sites may increase the level of eating disorders. This research examines the meaning of participation in a pro-anorexia Internet site and its relationship with disordered eating by using an interpretative phenomenological analysis of fifteen separate message 'threads' followed over a six-week period. Four themes were identified: (1) tips and techniques; (2) 'ana' v. anorexia nervosa; (3) social support; and (4) need for anorexia. Findings suggest participation was multi-purpose, providing a coping function in relation to weight loss, and the contribution of sites to increased levels of eating disorders is not inevitable.     

An interpretative phenomenological analysis of the patient experience of awake craniotomy: Brain tumour diagnosis to discharge

Objectives.?Previous research exploring the patient experience of awake craniotomy (AC) has yielded contrasting accounts. The current study aimed to explore the lived experience of having undergone an AC in the United Kingdom. Design.?This was a qualitative, semi-structured interview study. Interviews were audio-recorded and transcribed verbatim. Data were analysed using interpretative phenomenological analysis (IPA). Methods.?Seven participants (three males, four females) who had undergone an AC in the United Kingdom took part in the study. Ages ranged between 26 and 41 years old at the time of interview. Time since AC ranged from 5 months to 4 years. Results.?Participants appeared to be satisfied with, and tolerant of, the AC experience. Three superordinate themes: use of self-preservation strategies prior to and during AC, a bizarre yet pleasant operation experience, and the need for more concrete information prior to surgery were identified. These themes appeared to be embedded in a core theme: relationship with the neurosurgeon. Conclusions.?The relationship with the neurosurgeon appears crucial to the patient experience of AC. This knowledge underscores the need for effective doctor-patient communication skills which could lead to improved delivery of care and more positive outcomes. STATEMENT OF CONTRIBUTION: WHAT IS ALREADY KNOWN ON THIS SUBJECT??: ? Little is currently known about the patient experience of awake craniotomy in the United Kingdom. ? Previous studies have reported a satisfactory and tolerable experience (e.g. Danks et al. 1998) however a recent exploratory study has reported an anxiety provoking experience (Palese et al. 2008). WHAT DOES THIS STUDY ADD??: ? This study adds to paucity of research literature exploring the patient experience of awake craniotomy in the United Kingdom. ? The findings emphasize the importance of the patients' relationship with the neurosurgeon, underscoring the need for neurosurgeons to have effective communication skills when preparing patients for, and guiding patients through, the awake craniotomy procedure. ? The study highlights the need for better information provision in neurosurgery departments.     

Young women's accounts of intimate partner violence during adolescence and subsequent recovery processes: An interpretative phenomenological analysis

Objective. Previous qualitative research into the experience of intimate partner violence (IPV) has largely focused upon mature women's accounts. The objectives of this interpretative phenomenological analysis (IPA) were to explore three young women's understandings of why they had been vulnerable to IPV in mid-to-late adolescence, their experiences of IPV, and their recovery processes. Design. This study followed guidelines for IPA, largely focusing upon shared aspects of the experience of IPV as narrated by three young women who considered that they had since recovered from the experience. Method. Semi-structured interviews explored participants' retrospective understandings of how they had become entrapped in a long-term abusive relationship in adolescence, how IPV had affected them at the time, and the processes that they had found helpful to recover well-being. Findings. Participants largely attributed their vulnerability to IPV to feeling confused about feelings and relationships, disconnected, and powerless in early adolescence. IPV was described as escalating insidiously, rendering participants confined, anxious and powerless, ensnaring them in their partner's family, marginalized in their own families, and undermining their identities. Recovery processes began with pivotal moments. Participants described repairing identity through engaging in age-appropriate activities, extricating self from the partner's family, and rebuilding family relationships. Conclusions. Participants described experiences of IPV and recovery in adolescence that differed in some ways from those previously identified in adult women and were interpreted using theories of adolescent identity development and attachment.     

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.     

An interpretative phenomenological analysis of adaptation to recurrent venous thrombosis and heritable thrombophilia: the importance of multi-causal models and perceptions of primary and secondary control

Venous thromboembolic disease (VTE) is a serious, life-threatening condition and a major cause of mortality and morbidity. Heritable thrombophilia increases risk of recurrent VTE. The present study employed Interpretative Phenomenological Analysis (IPA) to explore adaptation to recurrent VTE and heritable thrombophilia in six female patients. Three main themes were identified focusing on: (1) patients' multi-causal models of VTE and the maintenance of; (2) primary control; and (3) secondary control as facilitators of adjustment. Overall, genetic testing following recurrent VTE did not have a negative impact on patients. One area of concern, however, related to passing on the susceptibility to children.     

Patients' views of physical activity as treatment for depression: a qualitative study

Background

Clinical guidance recommends physical activity to manage patients with persistent subthreshold depressive symptoms or mild-to-moderate depression. However, little is known regarding the acceptability of physical activity as a treatment for depression from patients'' perspective.

Aim

To explore patients'' views of physical activity for the treatment of depression in the context of primary care.

Design of study

In-depth interviews were held with 33 participants taking part in a randomised controlled trial assessing the effectiveness of physical activity for the management of depression.

Setting

Primary care.

Results

Most participants perceived physical activity to be an acceptable treatment for depression. The mechanisms by which physical activity could enhance mood were attributed to a number of subjective benefits including biochemical pathways, providing a source of distraction from negative thoughts, and a sense of purpose. Participants who expressed a belief that their depression was caused by biochemical mechanisms reported activity that ‘raised the heartbeat’ as most beneficial, while those who believed depression was situational in origin tended to state the benefits of less-aerobic activities, such as walking. Many participants reported low motivation and a lack of confidence as barriers to undertaking physical activity. These patients suggested that medication could be helpful for initiating and maintaining activity.

Conclusion

Patients view physical activity as an effective treatment for depression. However, they vary in their views about how physical activity might impact on depression, what intensity and form of activity is necessary to enhance mood, and the barriers to undertaking activity. This variation suggests the need for GPs to elicit patients'' views on physical activity as a treatment, and offer interventions that are tailored to the needs and expectations of individual patients.     

Qualitative study of depression management in primary care: GP and patient goals, and the value of listening.

BACKGROUND: Guidelines for depression management have been developed but little is known about GP and patient goals, which are likely to influence treatment offers, uptake, and adherence. AIM: To identify issues of importance to GPs, patients, and patients' supporters regarding depression management. GP and patient goals for depression management became a focus of the study. DESIGN OF STUDY: Grounded theory-based qualitative study. SETTING: GPs were drawn from 28 practices. The majority of patients and supporters were recruited from 10 of these practices. METHOD: Sixty-one patients (28 depressed, 18 previously depressed, 15 never depressed), 18 supporters, and 32 GPs were interviewed. RESULTS: GPs described encouraging patients to view depression as separate from the self and 'normal' sadness. Patients and supporters often questioned such boundaries, rejecting the notion of a medical cure and emphasising self-management. The majority of participants who were considering depression-management strategies wanted to 'get out' of their depression. However, a quarter did not see this as immediately relevant or achievable. They focused on getting by from day to day, which had the potential to clash with GP priorities. GP frustration and uncertainty could occur when depression was resistant to cure. Participants identified the importance of GPs listening to patients, but often felt that this did not happen. CONCLUSION: Physicians need greater awareness of the extent to which their goals for the management of depression are perceived as relevant or achievable by patients. Future research should explore methods of negotiating agreed strategies for management.     

Child abuse, other early experiences and depression: II. Single episode and recurrent/chronic subtypes of depression and their link to early experiences

Summary The participants described in Part I of this series of two papers were investigated with respect to the adult onset of DSM-III-R Major Depression and its relationship with child abuse and other early experiences. Those participants with a lifetime experience of Major Depression were classified into (a) a single episode lasting no longer than two years (single episode, S.E.) and (b) either two or more episodes or any episode lasting for two years or more (recurrent or chronic, R.C). Discriminant function analysis revealed that the lack of mother's overprotection, mother's child abuse, father's overprotection, lack of mother's care, and the female sex mainly predicted the onset of Major Depression of any type whereas paternal overprotection, lack of mother's child abuse, and lack of maternal overprotection predicted R.C. than S.E. subtype.