Jane Noyes

Using qualitative evidence in decision making for health and social interventions: an approach to assess confidence in findings from qualitative evidence syntheses (GRADE-CERQual).

Simon Lewin and colleagues present a methodology for increasing transparency and confidence in qualitative research synthesis.

Investigating complexity in systematic reviews of interventions by using a spectrum of methods

Systematic reviews framed by PICOS (Populations, Interventions, Comparisons, Outcomes, and Study designs) have been valuable for synthesizing evidence about the effects of interventions. However, this framework is limited in its utility for exploring the influence of variations within populations or interventions, or about the mechanisms of action or causal pathways thought to mediate outcomes, other contextual factors that might similarly moderate outcomes, or how and when these mechanisms and elements interact. Valuable insights into these issues come from configurative as well as aggregative methods of synthesis. This article considers the range of evidence that can be used in systematic reviews of interventions to investigate complexity in terms of potential sources of variation in interventions and their effects, and presents a continuum of purposes for, and approaches to, evidence synthesis. Choosing an appropriate synthesis method takes into account whether the purpose of the synthesis is to generate, explore, or test theories. Taking complexity into account in a synthesis of economic evidence similarly shifts emphasis from evidence synthesis strategies focused on aggregation toward configurative strategies that aim to develop, explore, and refine (in advance of testing) theories or explanations of how and why interventions are more or less resource intensive, costly or cost-effective in different settings, or when implemented in different ways.

Home event recordings of oxygenation, breathing movements, and heart rate and rhythm in infants with recurrent life-threatening events

For an evaluation of the usefulness of event recording in identifying mechanisms for apparent life-threatening events, 94 infants (median age, 3.1 months; range, 0.5 to 12 months) with a history of two or more apparent life-threatening events of hitherto unknown cause underwent event recording of transcutaneous oxygen pressure, arterial oxygen saturation, (not recorded in all patients), breathing movements, pulse waveforms, electrocardiogram, and instantaneous heart rate. Recordings were triggered by a fall in transcutaneous oxygen pressure to less than 20 mm Hg. During a median duration of event recording of 1.3 months (0.1 to 10 months), 52 events were recorded in 34 patients; 7 of the events had to be excluded because of uninterpretable signals. The following mechanisms were identified in the remaining 30 patients (45 events): a sudden change in skin perfusion but without hypoxemia (6 in 5 patients), hypoxemia induced by an epileptic seizure (6 in 5 patients), hypoxemia induced by suffocation by a parent (4 in 4 patients), and parental fabrication of events and medical history (7 in 6 patients). In the remaining 22 events in 12 patients, the precise mechanism of events could not be identified. Analysis of these as-yet-unexplained events showed prolonged abnormal hypoxemia (a fall in transcutaneous oxygen pressure to between 4 and 18 mm Hg and a fall in arterial oxygen saturation to 5% to 75%), lasting for 40 to 500 seconds in all. Only five of these events involved prolonged (> 20 seconds) apneic pauses, and only four an episode of bradycardia (heart rate < 80 or 60 beats/min). Thus event recording identified various mechanisms of apparent life-threatening events. In the events that remained unexplained, prolonged apneic pauses or episodes of bradycardia were found in only a minority. The identification of hypoxemia therefore may be more relevant to the early detection of these events than the identification of apnea or bradycardia or both. The relevance of these findings with regard to sudden infant death syndrome remains to be determined.

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.

Home monitoring of transcutaneous oxygen tension in the early detection of hypoxaemia in infants and young children

Twenty three patients (age range 0.5-40 months) with recurrent cyanotic episodes underwent physiological recordings, including transcutaneous oxygen tension (TcPO2) from a monitor modified for use at home (Kontron 821S). Of 69 episodes in which the arterial oxygen saturation (SaO2, Nellcor N200) was less than or equal to 80% for greater than or equal to 20 seconds and/or central cyanosis was present, the TcPO2 monitor alarmed (less than or equal to 20 mmHg or 2.67 kPa) in every episode. The pulse oximeter identified hypoxaemia in 62 out of 69 episodes, failing in seven episodes due to signal loss from movement artefact. In only seven of 69 episodes was there an accompanying apnoeic pause (greater than or equal to 20 seconds), and heart rate fell to less than or equal to 80 beats/minute in only five of 28 episodes in which an electrocardiogram was recorded. In 32 episodes in which SaO2 fell to less than or equal to 60%, the TcPO2 monitor alarmed after a median time interval of 16 seconds (maximum time interval 30 seconds). The TcPO2 monitor was then used in an uncontrolled trial at home in 350 patients at increased risk of sudden death and/or hypoxaemia. Indications for monitoring included apparent life threatening events or cyanotic episodes (n = 163), prematurity and prematurity related disorders (n = 86), and sudden unexpected death in one or more siblings (n = 122). The TcPO2 monitor detected cyanotic episodes at home in 81 patients, 52 of whom received vigorous stimulation and/or mouth to mouth resuscitation. Twenty one of these 52 patients had further hypoxaemic episodes documented in hospital with pulse oximetry. In 30 patients, the TcPo2 monitor also identified the gradual development of hypoxaemia, as confirmed by pulse oximetry. Twenty of these needed additional inspired oxygen and six subsequently needed ventilatory support in hospital. This TcPo2 monitor is a reliable detector of both sudden and gradual onset hypoxaemia and is able to be used by parents in the home.

A CRITIQUE OF STUDIES EXPLORING THE EXPERIENCES AND NEEDS OF PARENTS OF CHILDREN ADMITTED TO PAEDIATRIC INTENSIVE CARE UNITS

This paper is based on a critique of studies exploring the experiences and needs of parents whose children are admitted to paediatric intensive care units (PICU). The majority of studies have been conducted in North America and attempt to quantify parental feelings and experiences. Few qualitative studies have been published. Major theoretical concerns are developed in relation to the validity of quantitative and qualitative methods of data collection which currently serve to inform nursing practice. While methodological issues abound, consistency across studies supports the importance of certain features of parents’ experiences, such as being with their child and role conflict. None of the literature reviewed considered the specific needs of different ethnic and cultural groups, siblings, grandparents or the family as a unit. The views of fathers are also under-represented. Recommendations are made for future well-designed qualitative studies to be undertaken by experienced qualitative researchers from a holistic insider family perspective.

Negative extrathoracic pressure ventilation in central hypoventilation syndrome.

Nine patients with central hypoventilation syndrome (CHS) were treated with negative extrathoracic pressure ventilation (VNEP). Treatment with VNEP was started between 20 days and 57 months of age, which was two days to 47 months after diagnosis. The equipment to provide VNEP utilised a new system with a latex neck seal and Perspex chamber allowing easy access to the child. Seven patients are managed with VNEP at home by their parents. They did not have a tracheostomy when VNEP was started at ages of 22, 24, 31, 38, and 75 days, 5 and 57 months. They have continued to be successfully managed with VNEP and without tracheostomy. Short periods of intubation and positive pressure ventilation were required on 10 occasions (median duration 7 days, range 4 to 21 days) in four subjects during respiratory tract infections. Three patients required periods of continuous positive airway pressure (CPAP) via a nasal mask or a nasopharyngeal airway during sleep to overcome upper airway obstruction. In three patients the hypoventilation improved and two of these do not require regular ventilatory support at 1.3 and 3.4 years of age. Six of these seven patients are developing normally. In two patients with long term tracheostomies, VNEP could not be established at an age of 29 and 52 months because of tracheal obstruction after temporary removal of their tracheostomy cannula. VNEP is an effective, non-invasive, treatment in infants with CHS if initiated before tracheostomy. It may improve the childrens quality of life during the daytime. If upper airway obstruction is a problem in the first year of life, it may be combined with nasal mask CPAP.

Knowledge and information needs of young people with epilepsy and their parents: Mixed-method systematic review

BackgroundYoung people with neurological impairments such as epilepsy are known to receive less adequate services compared to young people with other long-term conditions. The time (age 13-19 years) around transition to adult services is particularly important in facilitating young peoples self-care and ongoing management. There are epilepsy specific, biological and psycho-social factors that act as barriers and enablers to information exchange and nurturing of self-care practices. Review objectives were to identify what is known to be effective in delivering information to young people age 13-19 years with epilepsy and their parents, to describe their experiences of information exchange in healthcare contexts, and to identify factors influencing positive and negative healthcare communication.MethodsThe Evidence for Policy and Practice Information Coordinating Centre systematic mixed-method approach was adapted to locate, appraise, extract and synthesise evidence. We used Leys cognitive hypothetical model of communication and subsequently developed a theoretical framework explaining information exchange in healthcare contexts.ResultsYoung people and parents believed that healthcare professionals were only interested in medical management. Young people felt that discussions about their epilepsy primarily occurred between professionals and parents. Epilepsy information that young people obtained from parents or from their own efforts increased the risk of epilepsy misconceptions. Accurate epilepsy knowledge aided psychosocial adjustment. There is some evidence that interventions, when delivered in a structured psycho-educational, age appropriate way, increased young peoples epilepsy knowledge, with positive trend to improving quality of life. We used mainly qualitative and mixed-method evidence to develop a theoretical framework explaining information exchange in clinical encounters.ConclusionsThere is a paucity of evidence reporting effective interventions, and the most effective ways of delivering information/education in healthcare contexts. No studies indicated if improvement was sustained over time and whether increased knowledge was effective in improving in self-care. Current models of facilitating information exchange and self-care around transition are not working well. There is an urgent need for further studies to develop and evaluate interventions to facilitate successful information exchange, and follow young people over time to see if interventions showing early promise are effective in the medium to long-term.

Paediatric palliative care: development and pilot study of a 'Directory' of life-limiting conditions.

BackgroundChildren’s palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and of palliative care itself. Existing definitions are of trajectory archetypes. The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes.MethodsThe diagnoses of patients under the care of five children hospices and a tertiary specialist palliative medicine service in the UK were recorded. Duplicates and diagnoses that were not life-limiting conditions according to the ACT/RCPCH criteria or were not primary were removed. The resulting Directory of life-limiting conditions was piloted by analysing Death Certificate data of children in Wales between 2002 and 2007.Results1590 diagnoses from children’s hospices and 105 from specialist palliative medicine were combined. After removals there were 376 diagnostic label. All ICD10 chapter headings were represented by at least one condition. The pilot study showed that 569 (54%) deaths in Wales were caused by LLC. Only four LLC resulted in ten or more deaths. Among deaths from LLC, the ten commonest diagnoses accounted for 32%, while the 136 diagnoses that caused one or two deaths accounted for 25%. The majority occurred from a small number of life-limiting conditions.ConclusionThe Directory is a practical tool for identifying most life-limiting conditions using ICD10 codes that facilitates extraction and analysis of data from existing sources in respect of life-limiting conditions in children such as death certificate data, offering the potential for rapid and precise studies in paediatric palliative care.

Learning from the Brazilian Community Health Worker Model in North Wales

Health policymakers in many countries are looking at ways of increasing health care coverage by scaling up the deployment of community health workers. In this commentary, we describe the rationale for the UK to learn from Brazil’s scaled-up Community Health Worker primary care strategy, starting with a pilot project in North Wales.