Living with nystagmus: a qualitative study.

BACKGROUND/AIMS: To identify aspects of daily living affected by nystagmus. METHODS: Semistructured interviews were conducted at the University of Leicester, UK with participants with acquired and infantile nystagmus. In total 21, participants were purposively sampled and recruited. Transcript analysis was conducted using constant comparative technique, based upon the grounded theory, to identify specific areas of living affected by nystagmus. RESULTS: Analysis identified six domains that were adversely affected by nystagmus; visual function, restriction of movement, standing out/not fitting in, feelings about the inner self, negativity about the future and relationships. Cosmetic appearance of nystagmus, including others' avoidant response to this, was described (n=18), as was others' failure to recognise what it is like to have nystagmus (n=18). Driving issues were frequently raised (n=19) and restrictions in occupation choice/opportunities (n=17) were highlighted. Reliance on others (n=16) also emerged. Additional to other categories was an overarching and universal distress arising from nystagmus affecting every aspect of everyday life. CONCLUSION: Interviews revealed universally negative experiences of living with nystagmus that are previously unreported. Findings are similar to studies conducted for strabismus, in particular with respect to cosmetic impact. This study provides the content that is required to develop a nystagmus-specific quality of life tool.

Receiving a summary of the results of a trial: qualitative study of participants' views.

OBJECTIVE: To explore trial participants' responses to receiving a summary of the results of a trial in pregnancy. DESIGN: Qualitative study with semistructured interviews. PARTICIPANTS: 20 women who had when pregnant participated in the ORACLE trial of antibiotics for preterm labour and preterm rupture of the membranes and requested a copy of the trial results. RESULTS: Less than a fifth of women who participated in the ORACLE trial indicated that they wished to receive the trial results. Reactions to the leaflet summarising the trial results were generally positive or neutral, although some women had difficulty in understanding the leaflet, and there was evidence of possible negative implications for women who had adverse outcomes. Women requested the results because they were interested in being able to complete their own personal narrative. They wished to know to which arm of the trial they had been allocated and the implications for their own pregnancy, and they were disappointed with receiving a generic summary. Women's accounts indicated some confusion about the trial findings. CONCLUSIONS: Recommendations that research participants be routinely provided with the results of studies have been made without the benefit of research to show the consequences of doing this or how it should best be managed. Caution is needed, as is more evaluation of how feedback of results should be handled, and assessment of the risks, benefits, and costs.

Patients' accounts of being removed from their general practitioner's list: qualitative study.

OBJECTIVE: To explore patients' accounts of being removed from a general practitioner's list. DESIGN: Qualitative analysis of semistructured interviews. SETTING: Patients' homes in Leicestershire. PARTICIPANTS: 28 patients who had recently been removed from a general practitioner's list. RESULTS: The removed patients gave an account of themselves as having genuine illnesses needing medical care. In putting their case that their removal was unjustified, patients were concerned to show that they were "good" patients who complied with the rules that they understood to govern the doctor-patient relationship: they tried to cope with their illness and follow medical advice, used general practice services "appropriately," were uncomplaining, and were polite with doctors. Removed patients also used their accounts to characterise the removing general practitioner as one who broke the lay rules of the doctor-patient relationship. These "bad" general practitioners were rude, impersonal, uncaring, and clinically incompetent and lied to patients. Patients felt very threatened by being removed from their general practitioner's list; they experienced removal as an attack on their right to be an NHS patient, as deeply distressing, and as stigmatising. CONCLUSIONS: Removal is an overwhelmingly negative and distressing experience for patients. Many of the problems encountered by removed patients may be remediable through general practices having an explicit policy on removal and procedures in place to help with "difficult" patients.

Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents.

OBJECTIVES: To examine young people's and parents' accounts of communication about cancer in childhood. DESIGN: Semistructured interviews analysed using the constant comparative method. SETTING: Paediatric oncology unit. PARTICIPANTS: 13 families, comprising 19 parents (13 mothers, six fathers) and 13 patients aged 8-17 years, recruited from one paediatric oncology unit. The patients had cancer or brain tumour. RESULTS: Most parents described acting in an executive-like capacity, managing what and how their children were told about their illness, particularly at the time of diagnosis. Their accounts were shaped by concerns to manage their identity as strong and optimistic parents and to protect their child's wellbeing. The patients identified elements of their parents' role that both facilitated and constrained their communication, and while they welcomed their parents' involvement, some expressed unease with the constraining aspects of their parents' role. Some young people described feeling marginalised in consultations and pointed to difficulties they experienced in encounters with some doctors. CONCLUSIONS: There are difficulties in managing communication with young people who have a chronic, life threatening illness. Health professionals need to be aware of how the social positioning of young people (relative to adults) and the executive role of parents can contribute to the marginalisation of young people and hamper the development of successful relationships between themselves and young patients.