THE PROBLEMATIC WORLD OF FOLLOWING A RENAL DIET OUTSIDE THE HOME.

BACKGROUND: Individuals on peritoneal dialysis are given dietary advice to help reduce disease morbidity and mortality. However, the experience of people who have been given this advice is not well researched. OBJECTIVE: To understand the experiences of individuals on peritoneal dialysis when following dietary advice. METHOD: A phenomenological approach, using semi-structured in-depth interviews was used to understand the experiences of ten service-users of the renal dietetic service. Data were analysed using Framework Analysis. FINDINGS: One theme emerged around difficulty when eating outside the home. Individuals experienced negative emotions when following advice. Individuals ate foods reluctantly, offered excuses as to why meals could not be eaten, or in extreme cases did not attend certain social gatherings in order to avoid the perceived attention and judgement from fellow guests related to their food choices. CONCLUSION: A renal diet for peritoneal dialysis may be difficult to follow outside the home. Further support around eating in social situations may need to be offered when giving dietary advice.

Measurement properties of patient-reported outcome measures (PROMS) in Patellofemoral Pain Syndrome: a systematic review.

This systematic review investigated the measurement properties of disease-specific patient-reported outcome measures used in Patellofemoral Pain Syndrome. Two independent reviewers conducted a systematic search of key databases (MEDLINE, EMBASE, AMED, CINHAL+ and the Cochrane Library from inception to August 2013) to identify relevant studies. A third reviewer mediated in the event of disagreement. Methodological quality was evaluated using the validated COSMIN (Consensus-based Standards for the Selection of Health Measurement Instruments) tool. Data synthesis across studies determined the level of evidence for each patient-reported outcome measure. The search strategy returned 2177 citations. Following the eligibility review phase, seven studies, evaluating twelve different patient-reported outcome measures, met inclusion criteria. A 'moderate' level of evidence supported the structural validity of several measures: the Flandry Questionnaire, Anterior Knee Pain Scale, Functional Index Questionnaire, Eng and Pierrynowski Questionnaire and Visual Analogue Scales for 'usual' and 'worst' pain. In addition, there was a 'Limited' level of evidence supporting the test-retest reliability and validity (cross-cultural, hypothesis testing) of the Persian version of the Anterior Knee Pain Scale. Other measurement properties were evaluated with poor methodological quality, and many properties were not evaluated in any of the included papers. Current disease-specific outcome measures for Patellofemoral Pain Syndrome require further investigation. Future studies should evaluate all important measurement properties, utilising an appropriate framework such as COSMIN to guide study design, to facilitate optimal methodological quality.

Identifying a Framework for Hope in Order to Establish the Importance of Generalised Hopes for Individuals Who Have Suffered a Stroke.

Hope and hopelessness are important psychological constructs that physiotherapists should consider when working with patients who have experienced a stroke. The view of hope in rehabilitation is often focused around the concept of goals and how hope works within this framework. However, the current paper proposes a broader framework for hope and the importance of a more generalised view of understanding why a certain hope exists or is identified by a patient. A narrative review using an a priori thematic analysis was undertaken to consider how more generalised hopes are expressed by individuals who have suffered a stroke. An electronic search of 4 databases from inception until April 2014 was undertaken. Qualitative articles were included if they considered the concept of hope for patients who had suffered a stroke. The results identified three themes which included (1) consideration of the patient's identity/identities, (2) meaningful activities, experiences, and interactions, and (3) the experience of suffering and need for relief. An awareness of patients' generalised hopes should be a priority for HCPs. Detailed implications for HCPs are identified within the discussion.

Patient reported outcomes (PROs) in clinical trials: is 'in-trial' guidance lacking? a systematic review.

BACKGROUND: Patient reported outcomes (PROs) are increasingly assessed in clinical trials, and guidelines are available to inform the design and reporting of such trials. However, researchers involved in PRO data collection report that specific guidance on 'in-trial' activity (recruitment, data collection and data inputting) and the management of 'concerning' PRO data (i.e., data which raises concern for the well-being of the trial participant) appears to be lacking. The purpose of this review was to determine the extent and nature of published guidelines addressing these areas. METHODS AND FINDINGS: Systematic review of 1,362 articles identified 18 eligible papers containing 'in-trial' guidelines. Two independent authors undertook a qualitative content analysis of the selected papers. Guidelines presented in each of the articles were coded according to an a priori defined coding frame, which demonstrated reliability (pooled Kappa 0.86-0.97), and validity (<2% residual category coding). The majority of guidelines present were concerned with 'pre-trial' activities (72%), for example, outcome measure selection and study design issues, or 'post-trial' activities (16%) such as data analysis, reporting and interpretation. 'In-trial' guidelines represented 9.2% of all guidance across the papers reviewed, with content primarily focused on compliance, quality control, proxy assessment and reporting of data collection. There were no guidelines surrounding the management of concerning PRO data. CONCLUSIONS: The findings highlight there are minimal in-trial guidelines in publication regarding PRO data collection and management in clinical trials. No guidance appears to exist for researchers involved with the handling of concerning PRO data. Guidelines are needed, which support researchers to manage all PRO data appropriately and which facilitate unbiased data collection.

'We are doing our best': African and African-Caribbean fatherhood, health and preventive primary care services, in England.

Recent policy pronouncements emphasise the importance of engaging fathers with preventive primary care services. However, in England, there is a paucity of literature which examines African and African-Caribbean fathers' experiences of service provision. This paper reports a study that investigated African and African-Caribbean fathers' beliefs about fatherhood, health and preventive primary care services, with the aim of addressing the deficit in the literature. Nine focus groups involving 46 African and African-Caribbean fathers, recruited using purposive sampling, were undertaken between October 2008-January 2009. Fatherhood was seen as a core aspect of the participants' identities. The fathers enacted these identities in a number of ways, such as caring for and protecting children, which were influenced by spirituality, relationships with women, paid work and racism. The fathers had concerns about their bodies, medical conditions, physical activity and forms of consumption. However, their primary focus was on maintaining and improving the well-being of their children. This resulted in them neglecting their own health needs as they had to meet the obligations of family life and paid work. The fathers reported limited contact with preventive primary care services and were unaware of their purpose, function and availability. They identified ethnicity as a positive asset, and felt their families and communities had particular strengths. However they acknowledged that structural constraints, including racism, influenced their perceptions of and access to local health services. The engagement of African and African-Caribbean fathers needs to be addressed more specifically in policy as part of a broader programme of action to tackle health inequalities. In addition, child health services could build on fathers' commitment to children's well-being through practice that addresses fathers' as well as mothers' needs in families.

Information needs before hospital discharge of myocardial infarction patients: a comparative, descriptive study.

AIMS AND OBJECTIVES: To explore the information needs of patients who have received treatment for a myocardial infarction before their discharge home from an acute hospital. WHAT IS KNOWN ABOUT THE TOPIC: Providing information for myocardial infarction patients is an important nursing function and is part of the role of health-care professionals delivering cardiac rehabilitation. It is essential to acknowledge and incorporate the self-perceived needs of patients into the information they receive. Hospital stays are becoming shorter, reducing the opportunities for nurses to provide predischarge information to patients. This highlights the challenge of adequately assessing and meeting patients' information needs. DESIGN: A comparative, descriptive survey. METHODS: A Patient Learning Needs Scale questionnaire was completed by 20 myocardial infarction patients within 72 hours of their intended discharge. Quantitative descriptive and inferential analyses were conducted using Statistical Package for Social Sciences. RESULTS: Patients indicated how important it was to know about each of 40 information items before discharge from hospital. Items related to medications, complications and physical activities were rated highly. Responses to an open question revealed that driving, returning to work and sources of support were issues of concern. Non-parametric Mann-Whitney U-tests showed that retired and older patients desired more information than their employed and younger counterparts, especially concerning community support. WHAT THE STUDY ADDS TO THE TOPIC: Previous research shows little examination of age and employment status in relation to the information needs of myocardial infarction patients. This study suggests that older and retired people may want more information than younger and employed patients. RELEVANCE TO CLINICAL PRACTICE: Older people are under represented in postdischarge cardiac rehabilitation programmes. Since these patients may need different information when discharged from younger individuals, nurses must decide how they can best meet their needs for information and continuing support.