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We lead multidisciplinary applied research and training to rethink the way health care is delivered in general practice and across the community.
Development and Validation of the Pride in Eating Pathology Scale (PEP-S).
UNLABELLED: There is a growing body of theoretical and clinical literature highlighting the role of pride in maintaining eating disordered behaviours. Despite its clinical importance, there are no measures to assess feelings of pride associated with eating psychopathology. This study describes the development and validation of the Pride in Eating Pathology Scale (PEP-S), a self-report questionnaire that examines feelings of pride towards eating disordered symptoms (e.g., pride in food restriction, thinness and weight loss). Participants were 390 females, recruited from university and community populations, whose mean age was 26.99 years. Respondents rated pride in eating pathology on a 7-point Likert-scale. Principal Component Analysis indicated that the 60-item scale comprised a four component structure: (1) pride in weight loss, food control and thinness, (2) pride in healthy weight and healthy eating, (3) pride in outperforming others and social recognition and (4) pride in capturing other people's attention due to extreme thinness. These four components explained a total of 65.31% of the variance. The PEP-S demonstrated very good internal reliability (α ranging from 0.88 to 0.98) and very good test-retest reliability over a 3-week time-span (r ranging from 0.81 to 0.93). The PEP-S also showed excellent convergent and discriminant validity. Furthermore, the scale discriminated between women with high and low levels of eating psychopathology. The PEP-S is a psychometrically robust measure of pride in eating pathology. It has the potential to advance theoretical understanding and may also be clinically useful. Copyright © 2015 John Wiley & Sons, Ltd. KEY PRACTITIONER MESSAGE: The PEP-S is a valid, reliable, quick and easy to administer self-report questionnaire that measures pride related to eating pathology. The PEP-S assesses four clinically relevant dimensions: (1) pride in weight loss, food control and thinness, (2) pride in healthy weight and healthy eating, (3) pride in outperforming others and social recognition and (4) pride in capturing other people's attention due to extreme thinness. The PEP-S has very good internal and test-retest reliability, and very good convergent and discriminant validity. The PEP-S distinguishes between women with higher and lower levels of eating psychopathology. The PEP-S makes an important contribution to understanding pride in eating psychopathology, which is essential from both clinical and theoretical perspectives.
Measuring compassionate care: views of healthcare staff.
Aim To explore healthcare professionals' views of measuring compassionate care. Method As part of a grounded theory study participants, who were healthcare professionals involved in the care of patients with type 2 diabetes, were invited to discuss the topic of compassionate care measurement through semi-structured interviews and focus groups. Results Measuring compassionate care was regarded as problematic because of its complex nature. Categories identified in the data that reflect this difficulty include distinguishing compassionate care from other concepts, relying on informal indicators, making the subjective objective, incorporating external influences and putting a measurement tool to use. Conclusion Findings highlighted the complexities associated with measuring compassionate care, and how attempts to do this by managers could be problematic.
The Importance of Integration of Stakeholder Views in Core Outcome Set Development: Otitis Media with Effusion in Children with Cleft Palate.
BACKGROUND: Approximately 75% of children with cleft palate (CP) have Otitis Media with Effusion (OME) histories. Evidence for the effective management of OME in these children is lacking. The inconsistency in outcome measurement in previous studies has led to a call for the development of a Core Outcome Set (COS). Despite the increase in the number of published COS, involvement of patients in the COS development process, and methods to integrate the views of patients and health professionals, to date have been limited. METHODS AND FINDINGS: A list of outcomes measured in previous research was identified through reviewing the literature. Opinion on the importance of each of these outcomes was then sought from key stakeholders: Ear, Nose and Throat (ENT) surgeons, audiologists, cleft surgeons, speech and language therapists, specialist cleft nurses, psychologists, parents and children. The opinion of health professionals was sought in a three round Delphi survey where participants were asked to score each outcome using a bespoke online system. Parents and children were also asked to score outcomes in a survey and provided an in-depth insight into having OME through semi-structured interviews. The results of the Delphi survey, interviews and parent/patient survey were brought together in a final consensus meeting with representation from all stakeholders. A final set of eleven outcomes reached the definition of "consensus in" to form the recommended COS: hearing; chronic otitis media (COM); OME; receptive language skills; speech development; psycho social development; acute otitis media (AOM); cholesteatoma; side effects of treatment; listening skills; otalgia. CONCLUSIONS: We have produced a recommendation about the outcomes that should be measured, as a minimum, in studies of the management of OME in children with CP. The development process included input from key stakeholders and used novel methodology to integrate the opinion of healthcare professionals, parents and children.
Transferring young people with cystic fibrosis to adult care.
AIM: To explore activities, interactions and behaviours during the first appointment in adult care for young people with cystic fibrosis. METHOD: Observational data were collected at 12 first appointments. Framework analysis was applied to written field notes. FINDINGS: Interaction enablers and interaction barriers were identified in the data. Practitioners endeavoured to be holistic, addressing personal as well as physical factors. This involved broaching individuals' interests, self-disclosure and humour. Various activities were accomplished. The role of parents in the continued management of cystic fibrosis was not raised at first appointments. DISCUSSION: Practitioners require clear objectives for first appointments in adult care to ensure young people adapt to this new healthcare setting. Young people should be prepared for transfer so they can respond to and ask questions, and parents should be assisted to relinquish control of their child's condition. Conclusion A modest set of objectives for the first appointment should be set to enable young people to retain information, while introducing them to a new service.
Loss and rebuilding: A qualitative study of late diagnosis of cleft palate.
PURPOSE: To explore the experiences of parents whose child received a late diagnosis of cleft palate (>24 hr after birth). DESIGN AND METHODS: Parents of 17 children and three nurses specialised in cleft care (specialist nurses) took part in a qualitative, semi-structured interview. Framework analysis was applied to data. RESULTS: Loss and rebuilding was an overarching concept-from the crescendo leading up to the bombshell of diagnosis, followed by the aftermath of dealing with the child's long-term condition. PRACTICE IMPLICATIONS: Specialist nurses can help parents to trust healthcare professionals and to feel confident in their ability to nurture by listening, informing, and supporting.
The management of Otitis Media with Effusion in children with cleft palate (mOMEnt): a feasibility study and economic evaluation.
BACKGROUND: Cleft lip and palate are among the most common congenital malformations, with an incidence of around 1 in 700. Cleft palate (CP) results in impaired Eustachian tube function, and 90% of children with CP have otitis media with effusion (OME) histories. There are several approaches to management, including watchful waiting, the provision of hearing aids (HAs) and the insertion of ventilation tubes (VTs). However, the evidence underpinning these strategies is unclear and there is a need to determine which treatment is the most appropriate. OBJECTIVES: To identify the optimum study design, increase understanding of the impact of OME, determine the value of future research and develop a core outcome set (COS) for use in future studies. DESIGN: The management of Otitis Media with Effusion in children with cleft palate (mOMEnt) study had four key components: (i) a survey evaluation of current clinical practice in each cleft centre; (ii) economic modelling and value of information (VOI) analysis to determine if the extent of existing decision uncertainty justifies the cost of further research; (iii) qualitative research to capture patient and parent opinion regarding willingness to participate in a trial and important outcomes; and (iv) the development of a COS for use in future effectiveness trials of OME in children with CP. SETTING: The survey was carried out by e-mail with cleft centres. The qualitative research interviews took place in patients' homes. The COS was developed with health professionals and parents using a web-based Delphi exercise and a consensus meeting. PARTICIPANTS: Clinicians working in the UK cleft centres, and parents and patients affected by CP and identified through two cleft clinics in the UK, or through the Cleft Lip and Palate Association. RESULTS: The clinician survey revealed that care was predominantly delivered via a 'hub-and-spoke' model; there was some uncertainty about treatment strategies; it is not current practice to insert VTs at the time of palate repair; centres were in a position to take part in a future study; and the response rate to the survey was not good, representing a potential concern about future co-operation. A COS reflecting the opinions of clinicians and parents was developed, which included nine core outcomes important to both health-care professionals and parents. The qualitative research suggested that a trial would have a 25% recruitment rate, and although hearing was a key outcome, this was likely to be due to its psychosocial consequences. The VOI analysis suggested that the current uncertainty justified the costs of future research. CONCLUSIONS: There exists significant uncertainty regarding the best management strategy for persistent OME in children with clefts, reflecting a lack of high-quality evidence regarding the effectiveness of individual treatments. It is feasible, cost-effective and of significance to clinicians and parents to undertake a trial examining the effectiveness of VTs and HAs for children with CP. However, in view of concerns about recruitment rate and engagement with the clinicians, we recommend that a trial with an internal pilot is considered. FUNDING: The National Institute for Health Research Health Technology Assessment programme. This study was part-funded by the Healing Foundation supported by the Vocational Training Charitable Trust who funded trial staff including the study co-ordinator, information systems developer, study statistician, administrator and supervisory staff.
Otitis media with effusion: experiences of children with cleft palate and their parents.
OBJECTIVE: To explore the views of children with cleft palate and their parents about daily life with otitis media with effusion and associated hearing loss. DESIGN: A qualitative study. Semistructured interviews were used to collect data from parents. Participatory techniques, including activities on a tablet computer, were used to collect data from children. Framework analysis was applied to interview transcripts. SETTING: Two English cleft units. PARTICIPANTS: A purposive sample of parents of 37 children aged 0 to 11 years with experience of otitis media with effusion. Their children also took part if aged 6 to 11 years (n = 22). RESULTS: Themes related to the following: (1) emotions (frustration, anger, sadness, happiness, anxiety), (2) educational experiences (struggling at school, having to sit at the front of the class, requiring extra support, missing lessons for appointments or due to ear infections), (3) social interactions (isolation, communication, reliance on siblings, participation in activities). CONCLUSIONS: A number of areas of interviewees' everyday life were affected by the presence of otitis media with effusion. Parents may need to be forewarned about the possible ongoing nature of this condition and its impact on a child's social and emotional experiences. Children may also benefit from age-appropriate information about otitis media with effusion and its treatment, including information on hearing tests, to help reduce any anxiety.
A qualitative study of a primary-care based intervention to improve the management of patients with heart failure: the dynamic relationship between facilitation and context.
BACKGROUND: There is currently a growing emphasis in primary care on upscaling the provision of evidence-based services for specific conditions, such as heart failure (HF), which have traditionally been seen as part of a specialist's domain. While contextual challenges associated with improvement in primary care have been documented previously, we still know relatively little about how the intentional, theory-informed facilitation of evidence-based change is shaped by contextual factors within this healthcare setting. Hence, a qualitative study was conducted to address the question: How is the process of facilitating evidence-based practice affected by the context of primary care? METHODS: Data collection took place across general practices in northwest England as part of a process evaluation of the Greater Manchester HF Investigation Tool (GM-HFIT) - a programme of work aiming to improve the management of HF in primary care. Semi-structured interviews, with purposefully selected GM-HFIT team members (n = 9) and primary care practitioners (n = 7), were supplemented by observational data and a three-month diary reflecting on facilitation activities. Framework analysis was used to manage and interpret data. RESULTS: We describe a complex and dynamic interplay between facilitation and context, focusing on three major themes: (1) Addressing macro and micro agendas; (2) Forming a facilitative unit; (3) Maintaining momentum. We show that HF specialist nurses (HFSNs) have a high level of professional credibility, which allows them to play a key role in making recommendations to practices for improving patient care. At the same time, we argue that contextual factors, such as top-level endorsement, the necessity to comply with a performance measurement system, and the varying involvement of practice nurses produce tensions that can have both an enabling and constraining effect on the process of facilitation. CONCLUSIONS: When facilitating the transfer of evidence, context is an important aspect to consider at a macro and micro level; a complex interplay can exist between these levels, which may constrain or enable efforts to amend practice. Those involved in facilitating change within primary care have to manage tensions arising from the interplay of these different contextual forces to minimise their impact on efforts to alter practice based on best evidence.
Using Framework Analysis in nursing research: a worked example.
AIMS: To demonstrate Framework Analysis using a worked example and to illustrate how criticisms of qualitative data analysis including issues of clarity and transparency can be addressed. BACKGROUND: Critics of the analysis of qualitative data sometimes cite lack of clarity and transparency about analytical procedures; this can deter nurse researchers from undertaking qualitative studies. Framework Analysis is flexible, systematic, and rigorous, offering clarity, transparency, an audit trail, an option for theme-based and case-based analysis and for readily retrievable data. This paper offers further explanation of the process undertaken which is illustrated with a worked example. DATA SOURCE AND RESEARCH DESIGN: Data were collected from 31 nursing students in 2009 using semi-structured interviews. DISCUSSION: The data collected are not reported directly here but used as a worked example for the five steps of Framework Analysis. Suggestions are provided to guide researchers through essential steps in undertaking Framework Analysis. The benefits and limitations of Framework Analysis are discussed. IMPLICATIONS FOR NURSING: Nurses increasingly use qualitative research methods and need to use an analysis approach that offers transparency and rigour which Framework Analysis can provide. Nurse researchers may find the detailed critique of Framework Analysis presented in this paper a useful resource when designing and conducting qualitative studies. CONCLUSION: Qualitative data analysis presents challenges in relation to the volume and complexity of data obtained and the need to present an 'audit trail' for those using the research findings. Framework Analysis is an appropriate, rigorous and systematic method for undertaking qualitative analysis.
Risks and benefits of ventilation tubes and hearing aids from the perspective of parents of children with cleft palate.
OBJECTIVE: To understand parents' experiences of treatment of otitis media with effusion (OME) for children with cleft palate. METHODS: Qualitative interviews with parents of 37 children who had non-syndromic cleft palate (with or without cleft lip). They were recruited from two cleft centres in northern England. Participants talked about choices, information, decision-making and satisfaction with ventilation tubes (VTs) and/or hearing aids (HAs). Interviews were recorded and transcribed verbatim. Themes were developed using Framework Analysis. RESULTS: VTs and HAs were not considered as equal treatments by interviewees, due to physical risks associated with the former and social consequences with the latter. The inequality was explained within three main themes: (1) treatment recommendations - most parents did not recall being offered options when OME was first treated; VTs tended to be presented initially followed by HAs if VTs had been inserted more than once. Treatment recommendations came from medical specialists, although participants could also be influenced by other parents' stories; (2) beliefs about mechanisms of treatments - interviewees believed VTs could address the underlying cause of OME by draining fluid. Some parents felt HAs signified a deterioration in hearing and an escalation of care. Improvements in hearing were reported by interviewees with VTs and HAs; (3) demands on parents - participants often saw the insertion of VTs as opportunistic, alongside another procedure (e.g. palatal closure). They could feel disappointed when VTs fell out or were perceived to have caused ear infections. Parental involvement was on-going for HAs (e.g. ordering batteries and tubes). Parents expressed fears about the potential for social stigma of HAs, although none reported significant teasing of children because they wore HAs. CONCLUSIONS: Parents' views about treatment for OME were shaped by differing perceptions about anticipated risks and benefits. VTs may have been seen as a simple fix, inserted alongside another procedure, but some interviewees had concerns about possible physical consequences. Others were more worried about anticipated social stigma associated with HAs. However, parents of children who wore a HA described them as easy to manage and well tolerated, at least until children got older and started to comment on their appearance.
Liminality and transfer to adult services: a qualitative investigation involving young people with cystic fibrosis.
BACKGROUND: Moving to adult care can be challenging for adolescents with a long-term condition; if not managed well it may result in non-adherence, failure to attend appointments and a decline in health post-transfer. Life expectancy for those with cystic fibrosis has improved considerably in recent decades. This patient group was selected as an exemplar for thinking about the movement of care from paediatric to adult services. OBJECTIVES: To explore young people's experience of transferring. DESIGN: A qualitative descriptive methodology, involving semi-structured interviews. SETTING: One adult cystic fibrosis unit in the United Kingdom. PARTICIPANTS: 19 patients (12=male) who had moved to the study site no more than 12 months prior to data collection, which took place between October 2010 and February 2011. METHODS: Interviews were conducted face-to-face, by telephone or email. Framework analysis was applied to interview transcripts. RESULTS: Data suggested transfer was a period of flux, during which participants progressed from a service that was relatively prescriptive to one that called for autonomy. They appeared to go through three stages during this process: fracturing, acclimatising and integrating. The concept of liminality was used as a lens to explore data. Liminality describes those on the threshold of a new social position and rituals that bring meaning to such change. Rites of passage, such as being visited by a member of the adult team and a first appointment within this new healthcare setting, were important because they allowed for initiation into the workings of the adult unit. However, the absence of certain rituals, including a ceremony marking departure from paediatrics, might hinder progression towards becoming an adult patient. CONCLUSIONS: The concept of liminality proved useful for thinking about data. Additional work should explore whether it can be applied to different long-term conditions and if initiation rituals vary across services. Nurses could play a role in preparing adolescents by assessing their readiness to transfer on a regular basis and intervening to address individual needs. This would help with young people's shift from a paediatric to adult identity, hopefully preventing them from experiencing a prolonged liminal state post-transfer.
Nurses' role in the acute management of patients with non-ST-segment elevation acute coronary syndromes: an integrative review.
BACKGROUND: People with non-ST-segment acute coronary syndrome (NSTACS) need to receive appropriate evidence-based therapies to optimise outcomes. Nurses could play an integral part in ensuring appropriate care. AIMS: An integrative literature review was prepared to evaluate the role nurses undertake during the acute phase in identifying, risk stratifying and managing patients with NSTACS. It also aimed to assess what role they might play in guideline adherence for this patient group. METHODS: Papers published between January 1990 and November 2011 were considered for inclusion. They were identified through four electronic databases. Articles were evaluated and data extracted by two reviewers. RESULTS: From 38 papers read in full, 10 were eligible for inclusion. One reported on a randomised controlled trial, four on qualitative projects and the rest on postal questionnaires or case-note data. Reviewed literature suggested that nurses in the acute setting perform five different roles in the care of people with NSTACS: educator, comforter, risk rater, data conduit and decision maker. Little research was found that addressed nurses' role in guideline adherence. CONCLUSION: Just as nurse-led or nurse-initiated thrombolysis improved care for ST-segment elevation, there is the potential for nurses to improve acute, evidence-based treatment for patients with NSTACS, especially those at higher risk. Nurses' roles in acute coronary syndrome (ACS) should include objective global risk assessment to guide early treatment decisions and incorporate the varied and rich activities identified in studies presented in the review.
What can qualitative studies tell us about the experiences of women who are pregnant that have an eating disorder?
OBJECTIVE: pregnancy is a life-stage during which women undergo significant changes to their body and can feel acute responsibility for the development and well-being of the fetus. A synthesis of qualitative studies was conducted to increase our understanding of pregnancy experiences among women with an eating disorder. DESIGN: a systematic search of eight electronic databases was carried out to identify relevant investigations. Studies were appraised by two authors. Data were combined using framework analysis. From 459 references, seven papers were included in the review. FINDINGS: an overriding concept of inner turmoil transpired from the synthesis. This personal conflict related to the fear and guilt expressed by interviewees and stemmed from their association of self-worth with their body, concerns about their child's health and worries about others' response to their eating and weight control practices. KEY CONCLUSIONS: participants reported vacillating between wanting to do the best for their child, being motivated by social pressures and feeling the need to control their body for self-preservation purposes. This created the inner turmoil they experienced while pregnant. IMPLICATIONS FOR PRACTICE: midwives should be sensitive to the possibility of an eating disorder among pregnant women. In such cases, practitioners could act as a conduit for any assistance required, guiding these mothers towards appropriate nutritional and psychological support. To do this, professionals must have knowledge of such conditions and be aware of services available for women disclosing disordered eating behaviours.
The perspectives of children and young people living with cleft lip and palate: a review of qualitative literature.
Objective : To explore the experiences of children and young people with cleft lip and/or palate (CL/P) in relation to being treated for and living with this condition. Design : A systematic review of qualitative research. Electronic databases and hand-searching were employed to identify relevant studies. The review centered on studies examining the views or experiences of young patients first-hand. Any study using a qualitative/mixed method design was eligible for inclusion. Results : From 184 potential references, 38 papers were read in full, from which only two studies of young people met all the review's inclusion criteria. Common reasons for exclusion were not being a qualitative study, not focusing on CL/P, or data coming from parents only. A further two papers provided a retrospective account of childhood with CL/P from interviews with adults. Their suitability for the review's aims was limited, but they were discussed. Conclusions : This review demonstrates that there is a paucity of evidence about the experiences of young people living with CL/P. No studies of children and only two studies of young people met all inclusion criteria. Identified papers implied that more attention is needed within families and services to help young people manage everyday difficulties such as bullying and self-consciousness due to facial difference.
Heart failure among South Asians: a narrative review of risk, nature, outcomes and management.
Individuals of South Asian descent have a high prevalence of comorbidities that are risk factors for the development of heart failure (HF), including diabetes mellitus and metabolic syndrome. However, little is known about the prevalence of HF, its management and prognosis for this population compared to Caucasians. Therefore, a literature review relating to the nature, outcome and treatment of HF in South Asian patients compared to Caucasians was conducted. It was anticipated that collating existing studies in this manner would be useful for guiding professionals in managing HF within this ethnic group, given that to achieve optimal care, regimens need to take into account cultural differences that may impact on adherence. Reviewed literature showed that South Asians with HF were more likely to be younger and have diabetes and hypertension. These papers also implied that outcomes for South Asians with HF were similar or even better than for Caucasians. The review highlighted the under-representation of South Asians in HF trials, meaning that evidence-based recommendations tailored to this specific population are limited. This is an important consideration because ethnic differences in response to medication have been reported; it cannot be assumed that treatments shown to work for Caucasians will be efficacious for those from minority ethnic groups.