Nicola A Ring

Treatment non-adherence in pediatric long-term medical conditions: systematic review and synthesis of qualitative studies of caregivers’ views

BackgroundNon-adherence to prescribed treatments is the primary cause of treatment failure in pediatric long-term conditions. Greater understanding of parents and caregivers’ reasons for non-adherence can help to address this problem and improve outcomes for children with long-term conditions.MethodsWe carried out a systematic review and thematic synthesis of qualitative studies. Medline, Embase, Cinahl and PsycInfo were searched for relevant studies published in English and German between 1996 and 2011. Papers were included if they contained qualitative data, for example from interviews or focus groups, reporting the views of parents and caregivers of children with a range of long-term conditions on their treatment adherence. Papers were quality assessed and analysed using thematic synthesis.ResultsNineteen papers were included reporting 17 studies with caregivers from 423 households in five countries. Long-term conditions included; asthma, cystic fibrosis, HIV, diabetes and juvenile arthritis. Across all conditions caregivers were making on-going attempts to balance competing concerns about the treatment (such as perceived effectiveness or fear of side effects) with the condition itself (for instance perceived long-term threat to child). Although the barriers to implementing treatment regimens varied across the different conditions (including complexity and time-consuming nature of treatments, un-palatability and side-effects of medications), it was clear that caregivers worked hard to overcome these day-to-day challenges and to deal with child resistance to treatments. Yet, carers reported that strict treatment adherence, which is expected by health professionals, could threaten their priorities around preserving family relationships and providing a ‘normal life’ for their child and any siblings.ConclusionsTreatment adherence in long-term pediatric conditions is a complex issue which needs to be seen in the context of caregivers balancing the everyday needs of the child within everyday family life. Health professionals may be able to help caregivers respond positively to the challenge of treatment adherence for long-term conditions by simplifying treatment regimens to minimise impact on family life and being aware of difficulties around child resistance and supportive of strategies to attempt to overcome this. Caregivers would also welcome help with communicating with children about treatment goals.

A methodological systematic review of what's wrong with meta-ethnography reporting

BackgroundSyntheses of qualitative studies can inform health policy, services and our understanding of patient experience. Meta-ethnography is a systematic seven-phase interpretive qualitative synthesis approach well-suited to producing new theories and conceptual models. However, there are concerns about the quality of meta-ethnography reporting, particularly the analysis and synthesis processes. Our aim was to investigate the application and reporting of methods in recent meta-ethnography journal papers, focusing on the analysis and synthesis process and output.MethodsMethodological systematic review of health-related meta-ethnography journal papers published from 2012–2013. We searched six electronic databases, Google Scholar and Zetoc for papers using key terms including ‘meta-ethnography.’ Two authors independently screened papers by title and abstract with 100% agreement. We identified 32 relevant papers. Three authors independently extracted data and all authors analysed the application and reporting of methods using content analysis.ResultsMeta-ethnography was applied in diverse ways, sometimes inappropriately. In 13% of papers the approach did not suit the research aim. In 66% of papers reviewers did not follow the principles of meta-ethnography. The analytical and synthesis processes were poorly reported overall. In only 31% of papers reviewers clearly described how they analysed conceptual data from primary studies (phase 5, ‘translation’ of studies) and in only one paper (3%) reviewers explicitly described how they conducted the analytic synthesis process (phase 6). In 38% of papers we could not ascertain if reviewers had achieved any new interpretation of primary studies. In over 30% of papers seminal methodological texts which could have informed methods were not cited.ConclusionsWe believe this is the first in-depth methodological systematic review of meta-ethnography conduct and reporting. Meta-ethnography is an evolving approach. Current reporting of methods, analysis and synthesis lacks clarity and comprehensiveness. This is a major barrier to use of meta-ethnography findings that could contribute significantly to the evidence base because it makes judging their rigour and credibility difficult. To realise the high potential value of meta-ethnography for enhancing health care and understanding patient experience requires reporting that clearly conveys the methodology, analysis and findings. Tailored meta-ethnography reporting guidelines, developed through expert consensus, could improve reporting.

Methods of synthesizing qualitative research studies for health technology assessment

OBJECTIVES Synthesizing qualitative research is an important means of ensuring the needs, preferences, and experiences of patients are taken into account by service providers and policy makers, but the range of methods available can appear confusing. This study presents the methods for synthesizing qualitative research most used in health research to-date and, specifically those with a potential role in health technology assessment. METHODS To identify reviews conducted using the eight main methods for synthesizing qualitative studies, nine electronic databases were searched using key terms including meta-ethnography and synthesis. A summary table groups the identified reviews by their use of the eight methods, highlighting the methods used most generally and specifically in relation to health technology assessment topics. RESULTS Although there is debate about how best to identify and quality appraise qualitative research for synthesis, 107 reviews were identified using one of the eight main methods. Four methods (meta-ethnography, meta-study, meta-summary, and thematic synthesis) have been most widely used and have a role within health technology assessment. Meta-ethnography is the leading method for synthesizing qualitative health research. Thematic synthesis is also useful for integrating qualitative and quantitative findings. Four other methods (critical interpretive synthesis, grounded theory synthesis, meta-interpretation, and cross-case analysis) have been under-used in health research and their potential in health technology assessments is currently under-developed. CONCLUSIONS Synthesizing individual qualitative studies has becoming increasingly common in recent years. Although this is still an emerging research discipline such an approach is one means of promoting the patient-centeredness of health technology assessments.

Protocol-developing meta-ethnography reporting guidelines (eMERGe)

BackgroundDesigning and implementing high-quality health care services and interventions requires robustly synthesised evidence. Syntheses of qualitative research studies can provide evidence of patients’ experiences of health conditions; intervention feasibility, appropriateness and acceptability to patients; and advance understanding of health care issues. The unique, interpretive, theory-based meta-ethnography synthesis approach is suited to conveying patients’ views and developing theory to inform service design and delivery. However, meta-ethnography reporting is often poor quality, which discourages trust in, and use of, meta-ethnography findings. Users of evidence syntheses require reports that clearly articulate analytical processes and findings. Tailored research reporting guidelines can raise reporting standards but none exists for meta-ethnography. This study aims to create an evidence-based meta-ethnography reporting guideline articulating the methodological standards and depth of reporting required to improve reporting quality.Methods/designThe mixed-methods design of this National Institute of Health Research-funded study (http://www.stir.ac.uk/emerge/) follows good practice in research reporting guideline development comprising: (1) a methodological systematic review (PROSPERO registration: CRD42015024709) to identify recommendations and guidance in conducting/reporting meta-ethnography; (2) a review and audit of published meta-ethnographies to identify good practice principles and develop standards in conduct/reporting; (3) an online workshop and Delphi studies to agree guideline content with 45 international qualitative synthesis experts and 45 other stakeholders including patients; (4) development and wide dissemination of the guideline and its accompanying detailed explanatory document, a report template for National Institute of Health Research commissioned meta-ethnographies, and training materials on guideline use.DiscussionMeta-ethnography, devised in the field of education, is now used widely in other disciplines. Methodological advances relevant to meta-ethnography conduct exist. The extent of discipline-specific adaptations of meta-ethnography and the fit of any adaptions with the underpinning philosophy of meta-ethnography require investigation. Well-reported meta-ethnography findings could inform clinical decision-making. A bespoke meta-ethnography reporting guideline is needed to improve reporting quality, but to be effective potential users must know it exists, trust it and use it. Therefore, a rigorous study has been designed to develop and promote a guideline. By raising reporting quality, the guideline will maximise the likelihood that high-quality meta-ethnographies will contribute robust evidence to improve health care and patient outcomes.

Developing novel evidence-based interventions to promote asthma action plan use: a cross-study synthesis of evidence from randomised controlled trials and qualitative studies

BackgroundLong-standing randomised controlled trial (RCT) evidence indicates that asthma action plans can improve patient outcomes. Internationally, however, these plans are seldom issued by professionals or used by patients/carers. To understand how the benefits of such plans might be realised clinically, we previously investigated barriers and facilitators to their implementation in a systematic review of relevant RCTs and synthesised qualitative studies exploring professional and patient/carer views. Our final step was to integrate these two separate studies.MethodsFirst, a theoretical model of action plan implementation was proposed, derived from our synthesis of 19 qualitative studies, identifying elements which, if incorporated into future interventions, could promote their use. Second, 14 RCTs included in the quantitative synthesis were re-analysed to assess the extent to which these elements were present within their interventions (that is, ‘strong’, ‘weak’ or ‘no’ presence) and with what effect. Matrices charted each element’s presence and strength, facilitating analysis of element presence and action plan implementation.ResultsFour elements (professional education, patient/carer education, (patient/carer and professional) partnership working and communication) were identified in our model as likely to promote asthma plan use. Thirteen interventions reporting increased action plan implementation contained all four elements, with two or more strongly present. One intervention reporting no effect on action plan implementation contained only weakly present elements. Intervention effectiveness was reported using a narrow range of criteria which did not fully reflect the four elements. For example, no study assessed whether jointly developed action plans increased use. Whilst important from the professional and patient/carer perspectives, the integral role of these elements in intervention delivery and their effect on study outcomes was under-acknowledged in these RCTs.ConclusionsOur novel approach provides an evidence-base for future action plan interventions. Such interventions need to ensure all elements in our implementation model (patient/carer and professional education to support development of effective partnership working and communication) are strongly present within them and a wider range of criteria better reflecting the realities of clinical practice and living with asthma are used to measure their effectiveness. We now intend to test such a complex intervention using a cluster trial design.

The 'vicious cycle' of personalised asthma action plan implementation in primary care: a qualitative study of patients and health professionals' views

BackgroundPersonal asthma action plans (PAAPs) have been guideline recommended for years, but consistently under-issued by health professionals and under-utilised by patients. Previous studies have investigated sub-optimal PAAP implementation but more insight is needed into barriers to their use from the perspective of professionals, patients and primary care teams.MethodsA maximum variation sample of professional and patient participants were recruited from five demographically diverse general practices and another group of primary care professionals in one Scottish region. Interviews were digitally recorded and data thematically analysed using NVivo.ResultsTwenty-nine semi-structured interviews were conducted (11 adults with asthma, seven general practitioners, ten practice nurses, one hospital respiratory nurse). Three over-arching themes emerged: 1) patients generally do not value PAAPs, 2) professionals do not fully value PAAPs and, 3) multiple barriers reduce the value of PAAPs in primary care. Six patients had a PAAP but these were outdated, not reflecting their needs and not used. Patients reported not wanting or needing PAAPs, yet identified circumstances when these could be useful. Fifteen professionals had selectively issued PAAPs with eight having reviewed one. Many professionals did not value PAAPs as they did not see patients using these and lacked awareness of times when patients could have benefited from one. Multi-level compounding barriers emerged. Individual barriers included poor patient awareness and professionals not reinforcing PAAP use. Organisational barriers included professionals having difficulty accessing PAAP templates and fragmented processes including patients not being asked to bring PAAPs to their asthma appointments.ConclusionsPrimary care PAAP implementation is in a vicious cycle. Professionals infrequently review/update PAAPs with patients; patients with out-dated PAAPs do not value or use these; professionals observing patients’ lack of interest in PAAPs do not discuss these. Patients observing this do not refer to their plans and perceive them to be of little value in asthma self-management. Twenty-five years after PAAPs were first recommended, primary care practices are still not ready to support their implementation. Breaking this vicious cycle to create a healthcare context more conducive to PAAP implementation requires a whole systems approach with multi-faceted interventions addressing patient, professional and organisational barriers.