Perceptions of social support and relationships while living with a brain tumour: a qualitative study.

OBJECTIVE: Having a brain tumour can disrupt social roles and networks. Despite growing evidence on the significance of social support in adjustment to chronic illness, research rarely focuses on the role of relationships when coping with a brain tumour. The current study sought to explore individuals' experiences of social support, and the dynamics within their social relationships, following a diagnosis of a brain tumour. METHODS: Interpretative Phenomenological Analysis (IPA) was used as a methodological framework. Participants were 12 individuals (83% female) aged 29-54 years diagnosed with primary brain tumour (83% low grade), on average 3.5 years post-diagnosis. In-depth semi-structured interviews were conducted, transcribed verbatim, and analysed using IPA. RESULTS: Five themes were identified: Coping together in the family; Being concerned about others; Giving and receiving support; Needing to share the experience; and Negotiating independence. The results highlighted that the illness affected a whole network of closest relationships, and that coping was not an individual task. CONCLUSION: Coping with the condition was deeply socially embedded. There was a cost associated with seeking support and participants did not always ask for it, in order not to burden the caregivers. Talking to others with similar diagnoses provided a sense of validation and belonging.

'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.

Identifying and Responding to Delirium in Acute Stroke: Clinical Team Members' Understandings.

Delirium is associated with increased mortality, morbidity, and length of hospital stay. In the acute stroke setting, delirium identification is challenging due to the complexity of cognitive screening in this patient group. The aim of this study was to explore how members of interprofessional stroke-unit teams identified and responded to a potential delirium in a patient. Online focus groups and interviews utilizing case vignettes were conducted with 15 participants: nurses, occupational therapists, speech and language therapists, and physiotherapists working in acute stroke services. Participants' understandings of delirium varied, most participants did not identify the symptoms of a possible hypoactive delirium, and nearly all participants discussed delirium symptoms in tentative terms. Aspects of interprofessional working were discussed through the expression of distinct roles around delirium identification. Although participants demonstrated an ethos of person-focused care, there are ongoing challenges involved in early identification and management of delirium in stroke survivors.

Being conductor of the orchestra: an exploration of district nursing leadership.

The purpose of the present study was to gain insight into how district nurses understand their leadership role. Data were generated through interviews and audio-journals and analysed using interpretive phenomenological analysis. Findings suggested that district nurses managing teams and caseloads experienced a burden of responsibility. Being creative problem solvers, they adopted facilitative ways of engaging with patients but directive approaches to team management. District nurses sharing leadership with multidisciplinary colleagues did not appear to experience this burden. Their leadership drew on their facilitative approaches to care-giving. If nurses enabled, rather than directed teams, they could create a context for developing autonomy and growth, easing the burden of responsibility.

A conversation analysis of communicative changes in a time-limited psychotherapy group for mothers with post-natal depression.

Objective: To examine qualitatively changes occurring in discussions within a time-limited psychotherapy group for mothers with post-natal depression. Method: Discussions occurring in a group that comprised five mothers and a therapist were recorded over the course of six one-hour therapeutic sessions. Participants had been referred or had self-referred to the group on the basis of having post-natal depression. The recorded discussions were transcribed and then analysed in accordance with principles of conversation analysis. Results: Analysis of early and later group discussions showed changes in group members' alignment with the topics that were introduced, in turn-allocation and turn-taking, and in the co-construction of accounts of experience. In contrast to early discussions, in later discussions participants aligned with topics relating to personal emotions, self-selected as next speakers in the discussions, and collaboratively worked up accounts that made sense of their experiences of childbirth and of being diagnosed as having post-natal depression. Conclusions: Interactional changes over the duration of the group point to the benefits for mothers with post-natal depression of participating in a time-limited psychotherapy group. Fine-grained analysis of group discussions potentially offers a way of examining changes over time in psychotherapeutic groups more generally.

The relationship between adult attachment and coping with brain tumour: the mediating role of social support.

OBJECTIVE: A primary brain tumour diagnosis is known to elicit higher distress than other forms of cancer and is related to high depressive symptomatology. Using a cross-sectional design, the present study explored how individuals cope with this diagnosis using an attachment theory framework. Attachment anxiety and attachment avoidance were hypothesised to be positively related to helplessness/hopelessness, anxious preoccupation, and cognitive avoidance; and negatively related to fighting spirit and fatalism coping. We proposed perceived social support to play a mediating role in those associations. METHODS: Four hundred and eighty participants diagnosed with primary brain tumours completed the Mini-Mental Adjustment to Cancer Scale (Mini-MAC), the Experiences in Close Relationships Questionnaire-Revised (ECR-R), and the modified Medical Outcomes Study-Social Support Scale (mMOS-SSS) online. RESULTS: Lower perceived social support mediated the positive associations between both higher attachment anxiety and avoidance and higher helpless/hopeless coping. Attachment anxiety was also positively associated with anxious preoccupation. This relationship was not mediated by perceived social support. Cognitive avoidance was unrelated to both attachment dimensions and social support. CONCLUSIONS: The findings highlight that the differences in coping repertoire are associated with social relatedness factors, specifically attachment security and its relationship to perceived social support. Implications of the findings are discussed.

'If they have a girlfriend, they have five girlfriends': Accountability and sexism in volunteer workers' talk about HIV/AIDS in a South African health setting.

Significant challenges remain in tackling the global HIV/AIDS epidemic. Effective action requires both appropriate policy at a global level and informed practice on the local level. Here, we report how workers in a project in Johannesburg, South Africa, make sense of HIV transmission. Discourse analysis of data from interviews with 63 participants shows that project workers routinely attribute transmission to men's sexual relationships with multiple female partners. This explanation is so pervasive that it renders invisible other routes to transmission. Absence of consideration of other routes to infection potentially restricts front-line practice, so hindering local attempts to tackle HIV/AIDS.

Expertise in action: Insights into the dynamic nature of expertise in community-based nursing.

AIMS AND OBJECTIVES: To gain insight into community nurses' experiences and how they make sense of the expertise they offer in their role. BACKGROUND: Globally, the spotlight is currently on community nursing expertise because of the movement of hospital-based to community-based care. Caring for people at home is no longer solely concerned with prevention, but delivering complex care to patients who are acutely unwell or at the end of their life. Little is known about the distinct expertise of community nurses, or their contribution to patient outcomes. There is a need to examine expertise in this group in order to inform current and future care provision within community settings. DESIGN: A hermeneutic, phenomenological study. METHOD: Semistructured interviews were conducted with eight community nurses in Scotland, UK, who hold an additional postregistration, professional qualification. Participants also kept audio-journals. Data were analysed using interpretive phenomenological analysis. FINDINGS: Participants described their expertise in three themes: negotiating a "way in" to care, managing complexity and "thinking on your feet." They did not refer to themselves as specialist practitioners, nor did they perceive that they were viewed as specialist by colleagues or management. They appeared to dismiss their range of expertise which included forming trusting relationships, anticipating care needs and problem-solving, enabling them to undertake complex care management. CONCLUSIONS: Expertise of community nurses in this study is dynamic, contextualised and action-oriented enabling them to be creative problem-solvers. It reflects engagement with patients and families and all aspects of the setting where care is provided, rather than being solely an identifiable set of specialist skills. RELEVANCE TO CLINICAL PRACTICE: It is vital to recognise community-based expertise internationally, especially if current WHO aims for community-based health care are to be achieved. Highlighting this expertise contributes to current discourse and may be considered in education and practice reviews.

The micro and the macro: How discourse of control maintains HIV-related stigma.

In this article, we examine how HIV/AIDS caregivers negotiate stigma in their discourse of providing care to HIV-positive individuals. Using interview data, we demonstrate how participants employed discourse of control in attempting to avoid and counter HIV-related stigma: participants rejected fear of associating with HIV-positive individuals by drawing on their knowledge of HIV transmission and their ability to control and avoid infection. Such discourses backfire, however, as the concept of HIV infection being controllable and thus avoidable maintains accountability for the disease. Thus, participants' micro discourse of control can maintain the macro discourse that produces HIV-related stigma.

Negotiating parental accountability in the face of uncertainty for attention-deficit hyperactivity disorder.

Despite extensive research into attention-deficit hyperactivity disorder (ADHD), parents' constructions of their children's behaviors have received limited attention. This is particularly true outside North American contexts, where ADHD is less established historically. Our research demonstrates how United Kingdom parents made sense of ADHD and their own identities postdiagnosis. Using discourse analysis from interviews with 12 parents, we show that they drew from biological and social environmental repertoires when talking about their child's condition, paralleling repertoires found circulating in the United Kingdom media. However, in the context of parental narratives, both these repertoires were difficult for parents to support and involved problematic subject positions for parental accountability in the child's behavior. In this article we focus on the strategies parents used to negotiate these troublesome identities and construct accounts of moral and legitimate parenting in a context in which uncertainties surrounding ADHD existed and parenting was scrutinized.

The dog that didn't growl: the interactional negotiation of momentary confabulations.

We examine from a discursive perspective momentary confabulations generated by patients in clinical interviews based on confabulation questionnaires. Commonly, neuropsychology treats such confabulations solely as evidence of patients' inabilities or deficits. Here we argue that patients' descriptions indicate the interaction of memory deficits with preserved interactional skills. More than this, however, patients' descriptions can be seen in part to arise out of the interviews themselves, in that the interviewer's turns (a) signal agreement rather than disagreement or challenge, and (b) lead to further development of descriptions instead of marking these out as problematic. These features mark out the clinical interviews as different from (i) everyday conversation, and (ii) other clinical settings such as the administration of verbal memory tests, and as a result the interviews allow scope for patients to develop unchallenged autobiographical narratives. Thus, ironically, interviews that rely on the standard use of confabulation questionnaires can provide settings that are especially conducive to the generation of the momentary confabulations that they aim to study.

'They're more than animals': refugees' accounts of racially motivated violence.

Previous discursive research has found that minority group members may deny or downplay the existence of discrimination. However, to date, little research has addressed the issue of violence against minority group members. This study therefore draws on interviews with asylum seekers and refugees in a Scottish city to analyse their reports of violence committed against them. One form of reporting violence was by way of a complaint available to any speaker, in making no reference to attributes of attackers or victim. When racism was alleged, it was presented as a tentative, reluctant or 'last resort' explanation. The descriptions offered by interviewees reflected the contributions made by the interviewer, highlighting the ways in which these reports are interactional co-productions. The results suggest that accounts from victims of seemingly racially motivated violence may function in similar ways to 'new racism' in making racism seem to 'disappear'. These findings point to the potential difficulties that arise in identifying and looking to challenge instances of 'new racism'.

'This is ordinary behaviour': categorization and culpability in Hamas leaders' accounts of the Palestinian/Israeli conflict.

The present paper examines the talk of three senior figures from the Palestinian Hamas political movement. Data are drawn from a series of journalistic interviews that were conducted in the months leading up to the invasion of Gaza by Israel in December 2007. Using membership categorization analysis, we explore the membership categories and category-bound attributes that interviewers use in questions about responsibility for potentially culpable actions and the ways that these are taken up, challenged, or reworked by interviewees in presenting their own versions. The analytic findings show that interviewers deploy categories bound up with terrorism while interviewees develop alternative categorizations of resistance. Interviewers construct Palestinians as victims of Hamas' actions while interviewees construct them as victims of Israeli aggression and international indifference. In warranting these alternative constructions, the interviewees contrast current behaviours of the international community with those of the past and align current Palestinian actions with those previously taken by Western nations in resisting illegitimate occupations. Through these descriptions of categories and actions, the interviewees attribute to the wider international community responsibility for addressing the events of the ongoing conflict.

Cancer-related psychosocial research: what are the perspectives of cancer care centre users on participation?

PURPOSE: To explore the perspectives of cancer care centre users on participation in psychosocial research to inform research design and ethics. METHODS: The study is based on a qualitative research design. Fourteen semistructured interviews were carried in people diagnosed with cancer and carers. The interview included four main questions about practical barriers to participation, types of research design, motivating factors and the conduct of research in a cancer care support setting. The data were analysed using qualitative content analysis. RESULTS: Interviewees demonstrated a willingness to participate in psychosocial research within certain circumstances. There were no practical barriers identified, although they considered payment for research-related travel important. The most acceptable research design was the face-to-face interview and the least preferred was the randomised control trial. The factors that motivated participation were altruism, valuing research, and making a contribution to the centre. Interviewees supported the conduct of research in cancer care support centres conditional upon delaying recruitment during the initial months of users' visits and its need to be discreet to avoid deterring visitors from accessing the centre. CONCLUSIONS: The study concludes that the personal interaction between participants and researchers is the most important feature of decision-making by patients/carers to join studies. Taking into account the perspectives of people affected by cancer during the early stages of research design may enhance recruitment and retention and can contribute to the development of research protocols and ethics.

Living with falls: house-bound older people's experiences of health and community care.

Despite world-wide emphasis on falls prevention, falls and their consequences remain a major health issue for older people, and their health care providers. Many systematic reviews have been undertaken to evaluate the impact of intervention programmes on falls reduction, however, relatively little research provides a voice for older people's own perceptions of such programmes. To readdress this imbalance the current research utilized a purposive sampling method to recruit a hard to reach group of older people who had received a post-fall health and social-care programme to investigate their experiences of the programme. Semi-structured interviews with eight housebound people aged over 65 who had fallen were undertaken, and data analysed using interpretative phenomenological analysis. Four themes were identified: losing independence; losing confidence; losing social identity; managing a changed self. Despite a tailored intervention programme minimal improvement in participants' psychological adjustment to falls was noted. Outcomes from this study are of interest to health and social-care staff who deliver falls prevention programmes. Staff need to enhance constructive adjustment to the older person's altered circumstances and ensure behaviours do not exacerbate their clients' loss of independence. This should assist older people's ability to positively manage their sense of self, allowing them to find continuing meaning in their daily lives.

A discourse analytic study of ME/CFS (Chronic Fatigue Syndrome) sufferers' experiences of interactions with doctors.

The aetiology, symptoms, diagnosis and treatment of ME/CFS are controversial. Doctors and sufferers often have opposing perspectives, leading to problematic clinical interactions. We use discourse analysis to explore ME/CFS sufferers' descriptions of interactions with medical professionals taken from an asynchronous, online sufferers' support group. Participants described themselves as experiencing limited medical care and attention but restricted criticisms to 'legitimate', pragmatic or ancillary matters such as a clinicians' unwillingness to prescribe untested treatments. Participants also described themselves as active in seeking a resolution to their problems. They thus attended to possible negative attributions of being 'complaining' or unmotivated to seek recovery.

Imaging the future: Does a qualitative analysis add to the picture?

Various studies report that patients with dense amnesia experience difficulties in simulating future events. It is argued that this resembles an inability to remember past episodes in that both indicate a deficit in mental scene construction. Such findings, however, rely upon quantitative content-based analyses of participants' verbal reports. Here, samples of verbal reports produced by participants with hippocampal lesions are subjected to a qualitative, discourse analysis of how participants and researchers negotiated the status of these reports. This shows that failure in mental scene construction can be viewed as an interactional achievement rather than the mere reporting of mental events. A multidisciplinary perspective which combines qualitative analysis with other forms of analytic technique may explain subtle differences between participants with hippocampal lesions and control participants.

Harry, Paul and the Filipino maid: racial and sexual abuse in local contexts.

Estacio argues for critical health psychology to take action to address three issues raised (unintentionally) in the 'Harry and Paul' sketch broadcast on British television. It is suggested that, although attempting humour, the sketch offensively reflected and reproduced patterns of social injustice that are far from funny. We argue here that micro-level analysis of the interactional elements of the sketch provides an understanding of how in everyday contexts Filipino workers are constructed in socially unjust terms and of how abuse can be justified. Such an understanding can allow critical health psychology to make a distinctive contribution to these topics.