Gavin Daker-White

Reliable and valid self-report outcome measures in sexual (dys)function: A systematic review

This paper examines the published reliability and validity of non-disease specific, self-report measures of sexual function. Relevant papers were found in a search of the Embase electronic bibliographic database, for English language papers (published 1980–99) reporting on the psychometric testing of sexual function questionnaires. Existing published reviews or collections of such instruments were also searched, and the reference lists of all papers obtained were “back-searched” to identify other measures. Included measures were evaluated in a systematic manner using published standards concerning the validity, internal consistency, and reproduceability of health measurement scales and quality of life measures. Twenty-three self-report measures were identified for inclusion in this review. A further 2 measures were identified by reviewers of this paper after the main searches were undertaken. One measure was found not to be exclusively self-report. Eleven (46% of 24 included measures) did not meet minimum published standards for reliability, internal consistency, and validity. However one of these was reliable and valid in the female-version only. Of the 14 reliable and valid measures, or versions thereof (58% of 24), 2 (8% of 24) met “superior” psychometric standards. Many measures were developed for use with patients in sex or marital therapy, and are mainly suitable for administration to people with long-term sex partners. It is sensible to assume that instruments are only reliable and valid in the often specialized populations in which they were developed.

Minority ethnic groups in dementia care: A review of service needs, service provision and models of good practice

Sixty-seven English language articles were obtained for the review, the majority of which (44, 65.7%) had US origins. Broadly, the main issues covered in the literature were the under-utilization of services by minority ethnic groups; the prevalence of dementia in different ethnic groups; the experience of care giving in different racial groups and language as a factor in cognitive assessment. Although it has been argued that the instruments used to assess cognitive function are culturally biased, the available published evidence would seem to suggest that the fundamental issue is language ability, rather than minority group membership per se . Studies into the care giving experience amongst different ethnic or racial groups suffer from theoretical and methodological weaknesses. Studies of help-seeking among various ethnic groups in the US have found that many do not prioritize dementia as a health problem in the face of more pressing concerns. There was little consensus amongst the articles about whether services should be provided specifically for different ethnic groups, reflecting a lack of evidence concerning the efficacy of different models of service provision.

‘They don't quite fit the way we organise our services’—results from a UK field study of marginalised groups and dementia care

The accessibility of dementia services to two groups of marginalised service users (people under 65 years of age and people from minority ethnic groups) was examined as part of a UK field study. In 61 interviews with a purposeful sample of professionals and paid carers in dementia care, the main issue in service access related to the small numbers of potential service users and their geographical dispersal. Other issues reflected those faced by people with dementia in general. At present, it seems as though decisions on care are based mainly on financial considerations and perceptions of the risk and dangerousness posed by people with dementia. These findings are linked to broader debates within the social model of disability about the need to address issues relating to people with learning impairments.

Blame the Patient, Blame the Doctor or Blame the System? A Meta-Synthesis of Qualitative Studies of Patient Safety in Primary Care.

Objective Studies of patient safety in health care have traditionally focused on hospital medicine. However, recent years have seen more research located in primary care settings which have different features compared to secondary care. This study set out to synthesize published qualitative research concerning patient safety in primary care in order to build a conceptual model. Method Meta-ethnography, an interpretive synthesis method whereby third order interpretations are produced that best describe the groups of findings contained in the reports of primary studies. Results Forty-eight studies were included as 5 discrete subsets where the findings were translated into one another: patients’ perspectives of safety, staff perspectives of safety, medication safety, systems or organisational issues and the primary/secondary care interface. The studies were focused predominantly on issues seen to either improve or compromise patient safety. These issues related to the characteristics or behaviour of patients, staff or clinical systems and interactions between staff, patients and staff, or people and systems. Electronic health records, protocols and guidelines could be seen to both degrade and improve patient safety in different circumstances. A conceptual reading of the studies pointed to patient safety as a subjective feeling or judgement grounded in moral views and with potentially hidden psychological consequences affecting care processes and relationships. The main threats to safety appeared to derive from ‘grand’ systems issues, for example involving service accessibility, resources or working hours which may not be amenable to effective intervention by individual practices or health workers, especially in the context of a public health system. Conclusion Overall, the findings underline the human elements in patient safety primary health care. The key to patient safety lies in effective face-to-face communication between patients and health care staff or between the different staff involved in the care of an individual patient. Electronic systems can compromise safety when they override the opportunities for face-to-face communication. The circumstances under which guidelines or protocols are seen to either compromise or improve patient safety needs further investigation.

Redefined by illness: meta-ethnography of qualitative studies on the experience of rheumatoid arthritis

Abstract Purpose: To synthesize published qualitative studies concerning the lived experience of rheumatoid arthritis (RA). To compare the conceptual features of qualitative studies covering two different time periods. Methods: In 2002, 24 items published 1975–2001 were identified in comprehensive literature searches and assessed by multiple reviewers. In 2010, the first author found 28 articles published 2002–2009 in a simple search of the Medline database and synthesized them alone. Articles were synthesized using meta-ethnography. Results: Both syntheses found that the main symptoms of RA are variable and unpredictable. However, in the first synthesis a sociological model dominated where RA was seen as an assault on self-identity with devastating social consequences. The main concepts were biographical disruption, role incompetence and the dread of dependency on others. In the second synthesis, the findings produced a model for health care practitioners tied to perceptions of control and incorporating a career-adaptation model of the experience of RA. Conclusions: We recommend that future synthesizers and primary qualitative health researchers focus more on non-hospital based populations and non-English language articles or study participants. The implications for rehabilitation follow from reflecting the findings of the synthesis against existing psychological models of coping and adaptation in RA. Implications for Rehabilitation Coping and adaptation are biographical processes, although the relative importance of active “disease mastery” versus more passive “getting used to it” is unclear. The uncertainty and fluctuating nature of symptoms and disease course presents existential challenges for people with RA in relation to maintaining physical functioning and social roles. Within a social model of disability, these findings point to potential intervention sites in society and relationships that would benefit people living with RA.

What is the potential for social networks and support to enhance future telehealth interventions for people with a diagnosis of schizophrenia? A critical interpretive synthesis

BackgroundDigital technologies are increasingly directed at improved monitoring, management and treatment of mental health. However, their potential contribution to social networks and self-management support for people diagnosed with a serious mental illness has rarely been considered. This review and meta-synthesis aimed to examine the processes of engagement and perceived relevance and appropriateness of telehealth interventions for people with a diagnosis of schizophrenia. The review addresses three key questions. How is the use of digital communications technologies framed in the professional psychiatric literature? How might the recognised benefits of telehealth translate to people with a diagnosis of schizophrenia? What is the user perspective concerning Internet information and communication technologies?MethodsA critical interpretive synthesis (CIS) of published findings from quantitative and qualitative studies of telehealth interventions for people with a diagnosis of schizophrenia.ResultsMost studies were of an exploratory nature. The professional discourse about the use of different technologies was overlain by concerns with surveillance and control, focusing on the Internet as a potential site of risk and danger. The critical synthesis of findings showed that the key focus of the available studies was on the delivery of existing traditional approaches (e.g. improving medications adherence, provision of medical information about the condition, symptom monitoring and cognitive behavioural therapy). Even though it was clear that the Internet has considerable potential in terms of accessing and utilising lay support, the potential of communication technologies in mobilising of resources for personal self-management or peer support was a relatively absent or hidden a focus of the available studies.ConclusionsBased on an interpretive synthesis of available studies, people with a diagnosis of schizophrenia or psychosis use the Internet primarily for the purposes of disclosure and information gathering. Empowerment, regulation and surveillance emerged as the key dimensions of engagement (or not) with telehealth interventions. The findings suggest that telehealth interventions are disproportionately used by particular patient groups (e.g.women, people who are employed). Further research needs to ascertain the mechanisms by which telehealth interventions may be potentially beneficial or harmful for engagement and management to people with a diagnosis of schizophrenia.

‘You don't get told anything, they don't do anything and nothing changes’. Medicine as a resource and constraint in progressive ataxia

Progressive ataxias are neurological disorders affecting balance, co‐ordination of movement and speech.

Getting a diagnosis v. learning to live with it? The case of the progressive ataxias

Objectives: To examine the perceptions and experiences of the diagnosis process in people with a progressive ataxia, a group of rare complex neurological conditions usually leading to disturbances in balance and speech. Methods: An explorative qualitative study involving analysis of public accounts posted to specialist Internet discussion forums by people with symptoms of ataxia. Internet data were utilized partly because ataxia is a rare condition. Results: The main themes that emerged were diagnosis as an arduous process, achieving diagnosis as a privilege, the importance of getting a medical label, being believed with regard to symptoms and ‘idiopathic’ diagnosis as a non-diagnosis. The accounts of people who were not able to secure a definitive diagnosis suggested that their priorities had changed from getting a diagnosis to managing and learning to live with their progressive disabilities. Conclusions: The diagnosis of the progressive ataxias presents challenges for patients, clinicians and in terms of the extensive use of finite healthcare resources. Our findings suggest there are varied views on the importance of diagnosis to people with progressive ataxia. This warrants further in-depth research to understand how people rate the relative utility of diagnostics.

MAXimising Involvement in MUltiMorbidity (MAXIMUM) in primary care: protocol for an observation and interview study of patients, GPs and other care providers to identify ways of reducing patient safety failures

Introduction Increasing numbers of older people are living with multiple long-term health conditions but global healthcare systems and clinical guidelines have traditionally focused on the management of single conditions. Having two or more long-term conditions, or ‘multimorbidity’, is associated with a range of adverse consequences and poor outcomes and could put patients at increased risk of safety failures. Traditionally, most research into patient safety failures has explored hospital or inpatient settings. Much less is known about patient safety failures in primary care. Our core aims are to understand the mechanisms by which multimorbidity leads to safety failures, to explore the different ways in which patients and services respond (or fail to respond), and to identify opportunities for intervention. Methods and analysis We plan to undertake an applied ethnographic study of patients with multimorbidity. Patients’ interactions and environments, relevant to their healthcare, will be studied through observations, diary methods and semistructured interviews. A framework, based on previous studies, will be used to organise the collection and analysis of field notes, observations and other qualitative data. This framework includes the domains: access breakdowns, communication breakdowns, continuity of care errors, relationship breakdowns and technical errors. Ethics and dissemination Ethical approval was received from the National Health Service Research Ethics Committee for Wales. An individual case study approach is likely to be most fruitful for exploring the mechanisms by which multimorbidity leads to safety failures. A longitudinal and multiperspective approach will allow for the constant comparison of patient, carer and healthcare worker expectations and experiences related to the provision, integration and management of complex care. This data will be used to explore ways of engaging patients and carers more in their own care using shared decision-making, patient empowerment or other relevant models.

Developing cartoons for long-term condition self-management information

BackgroundAdvocating the need to adopt more self-management policies has brought with it an increasing demand for information about living with and making decisions about long-term conditions, with a significant potential for using cartoons. However, the purposeful use of cartoons is notably absent in many areas of health care as is evidence of their acceptability to patients and lay others. This paper outlines the process used to develop and evaluate cartoons and their acceptability for a series of self-management guidebooks for people with inflammatory bowel disease, irritable bowel syndrome, diabetes, chronic obstructive pulmonary disease and chronic kidney disease (CKD).MethodsPrinciples for a process to develop information and cartoons were developed. Cartoon topics were created using qualitative research methods to obtain lay views and experiences. The CKD guidebook was used to provide a detailed exemplar of the process. Focus group and trial participants were recruited from primary care CKD registers. The book was part of a trial intervention; selected participants evaluated the cartoons during in-depth interviews which incorporated think-aloud methods.ResultsIn general, the cartoons developed by this process depict patient experiences, common situations, daily management dilemmas, making decisions and choices and the uncertainties associated with conditions. CKD cartoons were developed following two focus groups around the themes of getting a diagnosis; understanding the problem; feeling that facts were being withheld; and setting priorities. Think-aloud interviews with 27 trial participants found the CKD cartoons invoked amusement, recognition and reflection but were sometimes difficult to interpret.ConclusionHumour is frequently utilised by people with long-term conditions to help adjustment and coping. Cartoons can help provide clarity and understanding and could address concerns related to health literacy. Using cartoons to engage and motivate people is a consideration untapped by conventional theories with the potential to improve information to support self-management.