An exploration of the perspectives of help-seekers prescribed hearing aids

Aim - This pilot study uses qualitative methods to learn about the psycho-social needs of people who seek help with hearing loss. Background - There has been some emphasis in health policy to reduce the number of appointments required between assessment of hearing loss and fitting of hearing aids. This may respond to audiological needs but may not address the psycho-social needs. This study piloted a phenomenological approach to identify the patient's perspective. Methods - A phenomenological approach was taken to provide description of patient perspectives. Findings - Six patients reported that help-seeking was primarily influenced by the need to appease social partners and to improve hearing performance. Hearing aids were not regarded as acceptable treatments. Conclusions - Service providers need to consider the psycho-social consequences of hearing-aid issue alongside audiological needs.

Type 2 diabetes and dog walking:patients' longitudinal perspectives about implementing and sustaining physical activity

Background - Physical activity is particularly important for people with type 2 diabetes, as evidence suggests that any reduction in sedentary time is good for metabolic health. Aim - To explore type 2 diabetes patients' talk about implementing and sustaining physical activity. Design of study - Longitudinal, qualitative study using repeat in-depth interviews with 20 patients over 4 years following clinical diagnosis. Setting - Patients were recruited from 16 general practices and three hospitals across Lothian, Scotland. Results - Discussion, and salience, of physical activity was marginal in patient accounts of their diabetes management. Patients claimed to have only received vague and non-specific guidance about physical activity from health professionals, and emphasised a perceived lack of interest and encouragement. Aside from walking, physical activities which were adopted tended to attenuate over time. Patients' accounts revealed how walking a dog assisted this kind of activity maintenance over time. Three main themes are highlighted in the analysis: 1) incidental walking; 2) incremental physical activity gains; and 3) augmenting physical activity maintenance. The problems arising from walking without a dog (for example, lack of motivation) are also examined. Conclusion - Asking patients about pet preferences might seem tangential to medical interactions. However, encouraging dog walking or identifying another interest that promotes a regular commitment to undertake physical activity may yield long-term health benefits.

Designing multiple user perspectives and functionality for clinical decision support systems

Clinical Decision Support Systems (CDSSs) need to disseminate expertise in formats that suit different end users and with functionality tuned to the context of assessment. This paper reports research into a method for designing and implementing knowledge structures that facilitate the required flexibility. A psychological model of expertise is represented using a series of formally specified and linked XML trees that capture increasing elements of the model, starting with hierarchical structuring, incorporating reasoning with uncertainty, and ending with delivering the final CDSS. The method was applied to the Galatean Risk and Safety Tool, GRiST, which is a web-based clinical decision support system (www.egrist.org) for assessing mental-health risks. Results of its clinical implementation demonstrate that the method can produce a system that is able to deliver expertise targetted and formatted for specific patient groups, different clinical disciplines, and alternative assessment settings. The approach may be useful for developing other real-world systems using human expertise and is currently being applied to a logistics domain. © 2013 Polish Information Processing Society.

Developing user involvement in a UK cancer network:professionals’ and users’ perspectives

This paper explores the results of a consensus development exercise that explored diverse perspectives and sought to identify key principles for the development of user involvement in a cancer network. The exercise took place within one of 34 UK cancer networks and was a collaboration between the NHS, two universities and two voluntary sector organizations. The paper explores professionals’ and users’ perspectives on user involvement with reference to the current sociopolitical context of user participation. British policy documents have placed increasing emphasis on issues of patient and public participation in the evaluation and development of health services, and the issue of lay participation represents an important aspect of a critical public health agenda. The project presented here shows that developing user involvement may be a complex task, with lack of consensus on key issues representing a significant barrier. Further, the data suggest that professional responses can partly be understood in relation to specific occupational standpoints and strategies that potentially allow professionals to define and limit users’ involvement. The implications of these findings and the impact of the consensus development process itself are discussed.

Patient involvement in primary care mental health:a focus group study

Background: Patient involvement in health care is a strong political driver in the NHS. However in spite of policy prominence, there has been only limited previous work exploring patient involvement for people with serious mental illness. Aim: To describe the views on, potential for, and types of patient involvement in primary care from the perspectives of primary care health professionals and patients with serious mental illness. Design of study: Qualitative study consisting of six patient, six health professional and six combined focus groups between May 2002 and January 2003. Setting: Six primary care trusts in the West Midlands, England. Method: Forty-five patients with serious mental illness, 39 GPs, and eight practice nurses participated in a series of 18 focus groups. All focus groups were audiotaped and fully transcribed. Nvivo was used to manage data more effectively. Results: Most patients felt that only other people with lived experience of mental illness could understand what they were going through. This experience could be used to help others navigate the health- and social-care systems, give advice about medication, and offer support at times of crisis. Many patients also saw paid employment within primary care as a way of addressing issues of poverty and social exclusion. Health professionals were, however, more reluctant to see patients as partners, be it in the consultation or in service delivery. Conclusions: Meaningful change in patient involvement requires commitment and belief from primary care practitioners that the views and experiences of people with serious mental illness are valid and valuable.

Perspectives of carers on medication management in dementia:lessons from collaboratively developing a research proposal

Background: The need for carers to manage medication-related problems for people with dementia living in the community raises dilemmas, which can be identified by carers and people with dementia as key issues for developing carer-relevant research projects.A research planning Public Patient Involvement (PPI) workshop using adapted focus group methodology was held at the Alzheimer's Society's national office, involving carers of people with dementia who were current members of the Alzheimer's Society Research Network (ASRN) in dialogue with health professionals aimed to identify key issues in relation to medication management in dementia from the carer viewpoint. The group was facilitated by a specialist mental health pharmacist, using a topic guide developed systematically with carers, health professionals and researchers. Audio-recordings and field notes were made at the time and were transcribed and analysed thematically. The participants included nine carers in addition to academics, clinicians, and staff from DeNDRoN (Dementias and Neurodegenerative Diseases Research Network) and the Alzheimer's Society. Findings. Significant themes, for carers, which emerged from the workshop were related to: (1) medication usage and administration practicalities, (2) communication barriers and facilitators, (3) bearing and sharing responsibility and (4) weighing up medication risks and benefits. These can form the basis for more in-depth qualitative research involving a broader, more diverse sample. Discussion. The supported discussion enabled carer voices and perspectives to be expressed and to be linked to the process of identifying problems in medications management as directly experienced by carers. This was used to inform an agenda for research proposals which would be meaningful for carers and people with dementia. © 2014 Poland et al.; licensee BioMed Central Ltd.

Satisfaction with primary care:the perspectives of people with schizophrenia

Background. Schizophrenia affects up to 1% of the population in the UK. People with schizophrenia use the National Health Service frequently and over a long period of time. However, their views on satisfaction with primary care are rarely sought. Objectives. This study aimed to explore the elements of satisfaction with primary care for people with schizophrenia. Method. A primary care-based study was carried out using semi-structured interviews with 45 patients with schizophrenia receiving shared care with the Northern Birmingham Mental Health Trust between 1999 and 2000. Results. Five major themes that affect satisfaction emerged from the data: the exceptional potential of the consultation itself; the importance of aspects of the organization of primary care; the construction of the user in the doctor-patient relationship; the influence of stereotypes on GP behaviour; and the importance of hope for recovery. Conclusion. Satisfaction with primary care is multiply mediated. It is also rarely expected or achieved by this group of patients. There is a significant gap between the rhetoric and the reality of user involvement in primary care consultations. Acknowledging the tensions between societal and GP views of schizophrenia as an incurable life sentence and the importance to patients of hope for recovery is likely to lead to greater satisfaction with primary health care for people with schizophrenia.

Reasons for non-adherence to antiretroviral therapy:patients' perspectives provide evidence of multiple causes

The objective of the study was to define common reasons for non-adherence (NA) to highly active antiretroviral therapy (HAART) and the number of reasons reported by non-adherent individuals. A confidential questionnaire was administered to HIV-seropositive patients taking proteinase inhibitor based HAART. Median self-reported adherence was 95% (n = 178, range = 60-100%). The most frequent reasons for at least 'sometimes' missing a dose were eating a meal at the wrong time (38.2%), oversleeping (36.3%), forgetting (35.0%) and being in a social situation (30.5%). The mean number of reasons occurring at least 'sometimes' was 3.2; 20% of patients gave six or more reasons; those reporting the lowest adherence reported a significantly greater numbers of reasons (ρ = - 0.59; p < 0.001). Three factors were derived from the data by principal component analysis reflecting 'negative experiences of HAART', 'having a low priority for taking medication' and 'unintentionally missing doses', accounting for 53.8% of the variance. On multivariate analysis only the latter two factors were significantly related to NA (odds ratios 0.845 and 0.849, respectively). There was a wide spectrum of reasons for NA in our population. The number of reasons in an individual increased as adherence became less. A variety of modalities individualized for each patient are required to support patients with the lowest adherence.

Disentangling patient and public involvement in healthcare decisions:why the difference matters

Patient and public involvement has become an integral aspect of many developed health systems and is judged to be an essential driver for reform. However, little attention has been paid to the distinctions between patients and the public, and the views of patients are often seen to encompass those of the general public. Using an ideal-type approach, we analyse crucial distinctions between patient involvement and public involvement using examples from Sweden and England. We highlight that patients have sectional interests as health service users in contrast to citizens who engage as a public policy agent reflecting societal interests. Patients draw on experiential knowledge and focus on output legitimacy and performance accountability, aim at typical representativeness, and a direct responsiveness to individual needs and preferences. In contrast, the public contributes with collective perspectives generated from diversity, centres on input legitimacy achieved through statistical representativeness, democratic accountability and indirect responsiveness to general citizen preferences. Thus, using patients as proxies for the public fails to achieve intended goals and benefits of involvement. We conclude that understanding and measuring the impact of patient and public involvement can only develop with the application of a clearer comprehension of the differences.