Anne-Marie Boylan

To be accepted as normal: Public understanding and misconceptions concerning survivors of brain injury.

Primary objective: To determine the views held by the general public in Northern Ireland towards survivors of brain injury. Research design: Qualitative semi-structured interviews. Methods and procedures: Interviews were conducted with 16 members of the general public. Ten questions addressed issues such as the role of survivors of brain injury in society, the challenges they face and the characteristics ascribed to them. Main outcomes and results: When asked to describe someone with a brain injury participants typically used negative labels and identified the most common problems as relating to physical, cognitive, emotional and social functioning. There was a general failure to recognize that brain injury was a ‘hidden’ disability, with most participants expecting some outward manifestation. Relatively few previous studies have employed a qualitative approach to explore how the public perceives survivors of brain injury. Conclusion: Members of the public have an increasing awareness of the challenges faced by survivors of brain injury. However, in spite of this, perceptions of aggressiveness, dependency and unhappiness were still evident, suggesting potential problems in reintegrating survivors of brain injury with their communities.

Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study

There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals.

The power of symbolic capital in patient and public involvement in health research

Policy‐makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital.

interviewing children with Acquired Brain Injury (ABI)

Research into the lives of children with acquired brain injury (ABI) often neglects to incorporate children as participants, preferring to obtain the opinions of the adult carer (e.g. McKinlay et al., 2002). There has been a concerted attempt to move away from this position by those working in children’s research with current etiquette highlighting the inclusion of children and the use of a child-friendly methodology (Chappell, 2000). Children with disabilities can represent a challenge to the qualitative researcher due to the combination of maintaining the child’s attention and the demands placed on them by their disability. The focus of this article is to discuss possible impediments to interviewing children with acquired brain injury (ABI) and provide an insight into how the qualitative researcher may address these.

Cognitive and behavioural strategies for self-directed weight loss: systematic review of qualitative studies

We conducted a systematic review of qualitative studies to examine the strategies people employ as part of self‐directed weight loss attempts, map these to an existing behaviour change taxonomy and explore attitudes and beliefs surrounding these strategies.

Harnessing patient feedback data: A challenge for policy and service improvement

Online feedback from patients about their experiences of health services is increasing and likely to accelerate in the coming years.[1][1],[2][2] In other sectors, such as retail and travel, gathering, interpreting and responding to both solicited and unsolicited online consumer feedback is routine

Experiences of Self-Monitoring in Self-Directed Weight Loss and Weight Loss Maintenance: Systematic Review of Qualitative Studies:

The experience and role of self-monitoring in self-directed weight loss attempts may be distinctly different from that within formal interventions, and has yet to be fully explored. We systematically reviewed qualitative studies to examine experiences of self-monitoring as an aid to self-directed weight loss. Thematic synthesis was used to construct descriptive and analytical themes from the available data. In all, 22 studies (681 participants) were included, in which the uses of self-monitoring ranged from an aid to increase adherence to a tool for facilitating analysis. Self-monitoring also influenced and was influenced by self-perception and emotions. Feelings of shame were linked with abandonment of efforts. Findings highlight the centrality of interpretation of self-monitored data, the implications this interpretation has on sense of self, and the impact of broader discourses. Explicitly framing self-monitoring as a positive tool with which to aid analysis may encourage helpful use of this technique.

Digital health citizens and the future of the NHS

Health systems worldwide are facing unprecedented challenges as they seek to deliver better value healthcare against a backdrop of increasing levels of chronic disease, ageing populations, global financial crises and reduced public spending, and digital health tools and services are widely touted as

From waste product to blood, brains and narratives : developing a pluralist sociology of contributions to health research

Abstract The aim of this paper is to examine the meaning of the concept of donation in health research. Drawing on a set of narrative interviews with people invited to donate biosamples for research and a range of other studies, we identify several conceptual themes that speak to the complexity of the current landscape of critical thinking about donation. These conceptual themes are: the language of ‘donation’; a hierarchy of biosamples; alternative informational value; narratives as donation; coincidental donation, convenience and degree of invasiveness; and rights, consent and benefits of research participation. We call for a reconceptualisation of research donation to encompass not only the numerous types of sample readily classed as donations, but also other types of data and contributions, including narrative interviews, psychometric data, patient‐reported outcome measures, record‐linkage, and time and effort. We argue for the development of a pluralist sociology of research donations, and suggest that a ‘sociology of research contributions’ might better capture this complexity.

Experiences of Reframing during Self-Directed Weight Loss and Weight Loss Maintenance: Systematic Review of Qualitative Studies

Background Reframing means changing the way that a person thinks or feels about a weight loss attempt or weight loss maintenance to enhance its experience or facilitate its success. Although participants have described this, it has not been explored in the academic literature. Here, we set out to systematically review qualitative studies to examine the ways in which people use and experience reframing in self‐directed weight loss. Methods Seven electronic databases were searched to January 2017 for qualitative studies of adults with overweight or obesity attempting to lose weight or maintain weight loss through self‐directed behavior change. Studies must have contained some information pertinent to reframing. Thematic synthesis was used to identify descriptive and analytical themes from the available data. Results We included 23 studies, representing 723 participants. No study focused specifically on reframing. Most studies involved people who had tried to lose weight previously. In the most common examples of reframing, participants spoke of construing previous weight management attempts as “dieting”, whereas in current attempts they used reframing to move away from this concept. Participants spoke of finding reframing helpful because it removed the sense of depriving themselves and instead allowed them to construe the food choices as healthful. Likewise, the language of dieting created a sense of temporary effort, while construing this as a way of life allowed continuation of conscious control over energy balance without the feeling of undue effort. In some cases, these changes were bolstered by change in self‐identity. Conclusions Some people construe deliberate weight loss as a form of deprivation and cognitively reframe to avoid the negative emotions this creates and to prevent relapse. Reframing the dietary regimen as about healthy eating and a new way of life made weight control seem less burdensome for these participants and they felt able to maintain their efforts.