Sara Ryan

Repositioning mothers: Mothers, disabled children and disability studies

In this article we set out to review the ways in which mothers of disabled children have been portrayed within disability studies and the more broader academic literature. We argue that within disability studies mothers of disabled children occupy a liminal position because they are often not disabled and yet they can experience forms of disablism. Their experiences can differ markedly from the experiences of mothers of non‐disabled children and yet the consequences and outcomes of these experiences, such as developing a ‘special competence’ is largely overlooked. Mothers can work to effect change on behalf of their children and, in some cases, for disabled people more generally, however, this role of activist mother is largely undervalued. The review of literature presented here leads us to conclude that further research needs to be undertaken exploring and highlighting the ways in which mothers of disabled children negotiate, manage and approach their daily lives, operating within what are described by feminist scholars as oppressive mothering ideologies and disabling environments.

Six ‘biases’ against patients and carers in evidence-based medicine

BackgroundEvidence-based medicine (EBM) is maturing from its early focus on epidemiology to embrace a wider range of disciplines and methodologies. At the heart of EBM is the patient, whose informed choices have long been recognised as paramount. However, good evidence-based care is more than choices.DiscussionWe discuss six potential ‘biases’ in EBM that may inadvertently devalue the patient and carer agenda: limited patient input to research design, low status given to experience in the hierarchy of evidence, a tendency to conflate patient-centred consulting with use of decision tools; insufficient attention to power imbalances that suppress the patient’s voice, over-emphasis on the clinical consultation, and focus on people who seek and obtain care (rather than the hidden denominator of those that do not seek or cannot access care).SummaryTo reduce these ‘biases’, EBM should embrace patient involvement in research, make more systematic use of individual (‘personally significant’) evidence, take a more interdisciplinary and humanistic view of consultations, address unequal power dynamics in healthcare encounters, support patient communities, and address the inverse care law.

'Meltdowns', surveillance and managing emotions; going out with children with autism

The qualitative study from which the data reported here are taken, explored the experiences, support and information needs of parents of children diagnosed with autism spectrum disorders. 46 parents were interviewed either individually or in couples. Thematic analysis of the data revealed the complexity involved for the parents in taking their children out in public places. The emotion work parents conduct in public places both to make their children more acceptable within the space and to reduce the discomfort that others experience, helps to preserve the orderliness of public places. However, the special competence that parents developed over time also masks their turbulent feelings in public encounters.

Patients' experience of identifying and managing exacerbations in COPD: a qualitative study.

Background:Effective self-management in chronic obstructive pulmonary disease (COPD) is crucial to reduce hospital admissions and improve outcomes for patients. This includes early detection and treatment of exacerbations by patients themselves.Aims:To explore patients’ current understanding and experience of managing and identifying COPD exacerbations at home.Methods:A qualitative, interview-based study was carried out in patients’ homes. Interviews were audio-recorded, transcribed and analysed using a grounded theory approach. Forty-four patients (17 women, 27 men; age range 55–85 years), with moderate-to-very-severe COPD, were recruited to the interview study from primary and secondary care settings in Oxford, UK, during 2012–2013.Results:Patients identified exacerbations on the basis of measurable, ‘visible’ symptoms, such as cough and sputum and ‘invisible’ symptoms, such as chest sensations and bodily knowledge. Most patients seemed to use a combination of these approaches when identifying exacerbations, according to the symptoms that had the most impact on their well-being. Patients used additional self-management strategies during an exacerbation, such as self-medication (antibiotics and steroids) and monitored their recovery. Contact with health-care professionals usually occurred when patients felt no longer able to manage themselves.Conclusions:Patients use both assessment of objective biomarkers, which are aligned with medical knowledge, and subjective symptoms based on their experience, to identify and manage exacerbations of COPD. Health-care professionals and clinicians should acknowledge this ‘expert patient’ knowledge and integrate this into patients’ care plans to facilitate early recognition and treatment of exacerbations.

The brain is such a delicate thing: An exploration of fear and seizures among young people with epilepsy

Epilepsy is a condition where pathology, diverse manifestations and attached social understandings contribute to an emotional experience unlike many other chronic conditions. The emotional dimension to epilepsy has been little considered in existing research. Objectives: To explore the emotional experience of young people with epilepsy. Methods: A qualitative study involving in-depth interviews with 37 young people diagnosed with epilepsy. Results: Fear emerged as the key emotion and this largely related to the experience, or anticipated experience, of seizure activity. Three key features of fear and epilepsy emerged through the analysis; harm, temporality and action. The fear experienced was not only external, relating to immediate injury, but also internal in terms of potential damage to the brain. The embodied nature of epilepsy can, therefore, present a threat to conceptions of the self. Underlying this internal dimension of fear is an understanding of the brain as central to the sense of self. Conclusions: The experience of epilepsy does not only involve fear of physical harm but also fear of a loss of self. We conclude that there are broader (alternative) readings of the experience of epilepsy that are often overlooked.

I used to worry about what other people thought but now I just think ... well I don't care: Shifting accounts of learning difficulties in public places

This paper will explore the ways in which mothers of children with learning difficulties account for their childrens behaviour when they are in public places. Children with learning difficulties may demonstrate unconventional behaviour without having any apparent sign of impairment. This may lead others, unfamiliar with the children, to make inappropriate judgements about both the children and their mothers. An exploration of the ways in which mothers account for their childrens behaviour illustrates both the ways in which the mothers make sense of their childrens learning difficulties and how they attempt to facilitate their childrens participation in social life in public places. This paper draws upon the findings of a qualitative research project involving 18 mothers of children with moderate to severe learning difficulties. I begin by presenting a brief overview of the contextual and theoretical framework for the analysis focusing upon public places and disability. This section includes a discussion about the sociological concept of accounts and account making. The next section discusses the methods used in the study and this is followed by a section presenting the research findings. Finally, a discussion of these findings highlights how mothers shift in their approach to accounting for their childrens behaviour over time and I conclude by suggesting that the exploration of the use of accounts in public places is a useful tool for highlighting changes in perceptions of disability.

Using patients' experiences in e–learning design

Design of the undergraduate and postgraduate medical curriculum is traditionally the task of medical professionals and educationalists, with regulating bodies approving curriculum content. Although this should ensure a thorough approach to a medical model of the curriculum, it may overlook the importance of the patients perspective in medical education. The General Medical Council recently issued advice about patient and public involvement in all areas of medical education, including curricular design, but it is not immediately clear how this should be incorporated.

Care, Control, and the Electroconvulsive Therapy Ritual: Making Sense of Polarized Patient Narratives

Despite evidence of short-term effectiveness of ECT (electroconvulsive therapy), both positive and negative patient reports are common. However, research examining these polarized accounts has not adequately elucidated why such divergences occur. We thus sought to examine opposing patient narratives to better understand underlying meanings. Eighteen interviews were conducted with U.K.-based people who had experienced the treatment. Our analysis revealed that the quality of relations with staff, ECT artifacts (e.g., the ECT suite), and perceived outcomes all play a role in divergent accounts. Positive reflections on ECT emerged alongside narratives of trust in staff, comfort with ECT, and perception of sufficient personal control. Conversely, where negative evaluations of ECT predominated, there was anger associated with a lack of control, a belief that ECT made little sense, and was linked to past abuses and/or the unacceptability of side effects. We discuss the implications of our findings for professionals.

Do we all agree what “good health care” looks like? Views from those who are “seldom heard” in health research, policy and service improvement

The aim of this study was to ask whether there are shared ideas about what good health care looks like that apply across different populations and conditions. Do priorities among “seldom heard” groups differ from mainstream views and, if so, how might we understand these differences?

Untimely illness: When diagnosis does not match age‐related expectations

We explore the concept of “untimely diagnosis,” where the onset of a long‐term condition occurs at a life stage which does not conform to traditional expectations, focusing on two conditions (asthma and arthritis) typically associated with a particular life stage (childhood and older adulthood, respectively). Previous literature has focused on the meaning of chronic illness in terms of life history, and the biographical lens has been used in various ways to make sense of the experience. Less attention has been paid to the condition onset when it seems dissonant with chronological age.