Patient-centred screening for primary immunodeficiency: a multi-stage diagnostic protocol designed for non-immunologists.

Efficient early identification of primary immunodeficiency disease (PID) is important for prognosis, but is not an easy task for non-immunologists. The Clinical Working Party of the European Society for Immunodeficiencies (ESID) has composed a multi-stage diagnostic protocol that is based on expert opinion, in order to increase the awareness of PID among doctors working in different fields. The protocol starts from the clinical presentation of the patient; immunological skills are not needed for its use. The multi-stage design allows cost-effective screening for PID within the large pool of potential cases in all hospitals in the early phases, while more expensive tests are reserved for definitive classification in collaboration with an immunologist at a later stage. Although many PIDs present in childhood, others may present at any age. The protocols presented here are therefore aimed at both adult physicians and paediatricians. While designed for use throughout Europe, there will be national differences which may make modification of this generic algorithm necessary.

Health informatics: improving patient-centred healthcare pathway

Nowadays the use of information and communication technology is becoming prevalent in many aspects of healthcare services from patient registration, to consultation, treatment and pathology tests request. Manual interface techniques have dominated data-capture activities in primary care and secondary care settings for decades. Despites the improvements made in IT, usability issues still remain over the use of I/O devices like the computer keyboard, touch-sensitive screens, light pen and barcodes. Furthermore, clinicians have to use several computer applications when providing healthcare services to patients. One of the problems faced by medical professionals is the lack of data integrity between the different software applications which in turn can hinder the provision of healthcare services tailored to the needs of the patients. The use of digital pen and paper technology integrated with legacy medical systems hold the promise of improving healthcare quality. This paper discusses the issue of data integrity in e-health systems and proposes the modelling of "Smart Forms" via semiotics to potentially improve integrity between legacy systems, making the work of medical professionals easier and improve the quality of care in primary care practices and hospitals.

Review of nursing care for patients undergoing percutaneous coronary intervention: a patient journey approach

Aim.  To evaluate the existing literature to inform nursing management of people undergoing percutaneous coronary intervention. Background.  Percutaneous coronary intervention is an increasingly important revascularisation strategy in coronary heart disease management and can be an emergent, planned or rescue procedure. Nurses play a critical role in delivering care in both the independent and collaborative contexts of percutaneous coronary intervention management. Design.  Systematic review. Method.  The method of an integrative literature review, using the conceptual framework of the patient journey, was used to describe existing evidence and to determine important areas for future research. The electronic data bases CINAHL, Medline, Cochrane and the Joanna Briggs data bases were searched using terms including: (angioplasty, transulminal, percutaneous coronary), nursing care, postprocedure complications (haemorrhage, ecchymosis, haematoma), rehabilitation, emergency medical services (transportation of patients, triage). Results.  Despite the frequency of the procedure, there are limited data to inform nursing care for people undergoing percutaneous coronary intervention. Currently, there are no widely accessible nursing practice guidelines focusing on the nursing management in percutaneous coronary intervention. Findings of the review were summarised under the headings: Symptom recognition; Treatment decision; Peri-percutaneous coronary intervention care, describing the acute management and Postpercutaneous coronary intervention management identifying the discharge planning and secondary prevention phase. Conclusions.  Cardiovascular nurses need to engage in developing evidence to support guideline development. Developing consensus on nurse sensitive patient outcome indicators may enable benchmarking strategies and inform clinical trial design. Relevance to clinical practice.  To improve the care given to individuals undergoing percutaneous coronary intervention, it is important to base practice on high-level evidence. Where this is lacking, clinicians need to arrive at a consensus as to appropriate standards of practice while also engaging in developing evidence. This must be considered, however, from the central perspective of the patient and their family.

Patient participation in nursing care on medical wards: An integrative review

BACKGROUND: Patient participation is a way for patients to engage in their nursing care. In view of the possible link between patient participation and safety, there is a need for an updated review to assess patient participation in nursing care. OBJECTIVES: To investigate patients' and nurses' perceptions of and behaviours towards patient participation in nursing care in the context of hospital medical wards. DESIGN: Integrative review. DATA SOURCES: Three search strategies were employed in August 2013; a computerised database search of Cumulative Index of Nursing and Allied Health Literature, Cochrane Library, Medline and PsychINFO; reference lists were hand-searched; and forward citation searching was executed. REVIEW METHODS: After reviewing the studies, extracting study data and completing summary tables the methodological quality was assessed using the Mixed-Methods Assessment Tool by two reviewers. Reviewers met then to discuss discrepancies as well as the overall strengths and limitations of the studies. Discrepancies were overcome through consensus or a third reviewer adjudicated the issue. Within and across study analysis and synthesis of the findings sections was undertaken using thematic synthesis. RESULTS: Eight studies met inclusion criteria. Four themes were identified - enacting participation, challenges to participation, promoting participation and types of participation. Most studies included were conducted in Europe. The majority of studies used qualitative methodologies, with all studies sampling patients; nurses were included in three studies. Data were largely collected using self-reported perceptions; two studies included observational data. Methodological issues included a lack of reflexivity, un-validated data collection tools, sampling issues and low response rates. CONCLUSIONS: On medical wards, patients and nurses desire, perceive or enact patient participation passively. Challenging factors for patient participation include patients' willingness, nurses' approach and confusion around expectations and roles. Information-sharing was identified as an activity that promotes patient participation, suggesting nurses encourage active communication with patients in practice. Involving patients in assessment and care planning may also enhance patient participation. For education, enhancing nurses' understanding of the attributes of patient participation, as well as patient-centred care approaches may be beneficial for medical ward nurses. From here, researchers need to examine ways to overcome the barriers to patient participation; further nurse participants and observational data is required on medical wards.

Nurses' views of patient participation in nursing care

AIMS: To explore nurses' views of patient participation in nursing care on medical wards. BACKGROUND: Nurses have frequent contact with patients, highlighting their potential role in enabling patient participation. However, some nurses' actions and attitudes act as barriers, failing to achieve core requirements of patient participation. Discovering nurses' views may assist in developing strategies to encourage patient participation in hospitals. DESIGN: Interpretive study. METHODS: Twenty nurses were recruited from four medical wards, located in two Australian hospitals. In-depth semi-structured interviews were conducted between November 2013-March 2014 and analysed using content analysis. FINDINGS: Five categories emerged from the nurses' views. The first category, acknowledging patients as partners, showed nurses respected patients as legitimate participants. In the second category, managing risk, nurses emphasized the need to monitor participation to ensure rules and patient safety were maintained. Enabling participation was the third category, which demonstrated nurses' strategies that enhanced patients' participation. The fourth category was hindering participation; encapsulating nurses' difficulty in engaging patients with certain characteristics. In the final category, realizing participation, nurses believed patients could be involved in physical activities or clinical communication. CONCLUSION: Nurses have a crucial role in promoting patient participation. Through acknowledging and enabling participation, nurses may facilitate patient participation in a range of nursing activities. The nurse's role in enacting participation is complex, having to accommodate each patient's risks and characteristics, highlighting the need for good assessment skills. Education, policy and research strategies are essential to foster nurses' pivotal role in patient participation.

Undermining patient and public engagement and limiting its impact:the consequences of the Health and Social Care Act 2012 on collective patient and public involvement

Patient and public involvement has been at the heart of UK health policy for more than two decades. This commitment to putting patients at the heart of the British National Health Service (NHS) has become a central principle helping to ensure equity, patient safety and effectiveness in the health system. The recent Health and Social Care Act 2012 is the most significant reform of the NHS since its foundation in 1948. More radically, this legislation undermines the principle of patient and public involvement, public accountability and returns the power for prioritisation of health services to an unaccountable medical elite. This legislation marks a sea-change in the approach to patient and public involvement in the UK and signals a shift in the commitment of the UK government to patient-centred care. © 2013 John Wiley & Sons Ltd.

Patient influences on satisfaction and loyalty for GP services

Little is known about the influence that patients themselves have on their loyalty to a general practitioner (GP). Consequently, a theoretical framework that draws on diverse literature is proposed to suggest that along with satisfaction, patient loyalty is an important outcome for GPs. Comprising 174 Australian patients, this study identified that knowledgeable patients reported lower levels of loyalty while older patients and patients visiting a GP more frequently reported higher levels of loyalty. The results suggest that extending patient-centred care practices to encompass all patients may be warranted in order to improve patient satisfaction and loyalty. Further, future research opportunities abound, with intervention and dyadic research methodologies recommended.

Under the carpet : the politics and trauma of patient harm

Few studies have investigated iatrogenic outcomes from the viewpoint of patient experience. To address this anomaly, the broad aim of this research is to explore the lived experience of patient harm. Patient harm is defined as major harm to the patient, either psychosocial or physical in nature, resulting from any aspect of health care. Utilising the method of Consensual Qualitative Research (CQR), in-depth interviews are conducted with twenty-four volunteer research participants who self-report having been severely harmed by an invasive medical procedure. A standardised measure of emotional distress, the Impact of Event Scale (IES), is additionally employed for purposes of triangulation. Thematic analysis of transcript data indicate numerous findings including: (i) difficulties regarding patients‘ prior understanding of risks involved with their medical procedure; (ii) the problematic response of the health system post-procedure; (iii) multiple adverse effects upon life functioning; (iv) limited recourse options for patients; and (v) the approach desired in terms of how patient harm should be systemically handled. In addition, IES results indicate a clinically significant level of distress in the sample as a whole. To discuss findings, a cross-disciplinary approach is adopted that draws upon sociology, medicine, medical anthropology, psychology, philosophy, history, ethics, law, and political theory. Furthermore, an overall explanatory framework is proposed in terms of the master themes of power and trauma. In terms of the theme of power, a postmodernist analysis explores the politics of patient harm, particularly the dynamics surrounding the politics of knowledge (e.g., notions of subjective versus objective knowledge, informed consent, and open disclosure). This analysis suggests that patient care is not the prime function of the health system, which appears more focussed upon serving the interests of those in the upper levels of its hierarchy. In terms of the master theme of trauma, current understandings of posttraumatic stress disorder (PTSD) are critiqued, and based on data from this research as well as the international literature, a new model of trauma is proposed. This model is based upon the principle of homeostasis observed in biology, whereby within every cell or organism a state of equilibrium is sought and maintained. The proposed model identifies several bio-psychosocial markers of trauma across its three main phases. These trauma markers include: (i) a profound sense of loss; (ii) a lack of perceived control; (iii) passive trauma processing responses; (iv) an identity crisis; (v) a quest to fully understand the trauma event; (vi) a need for social validation of the traumatic experience; and (vii) posttraumatic adaption with the possibility of positive change. To further explore the master themes of power and trauma, a natural group interview is carried out at a meeting of a patient support group for arachnoiditis. Observations at this meeting and members‘ stories in general support the homeostatic model of trauma, particularly the quest to find answers in the face of distressing experience, as well as the need for social recognition of that experience. In addition, the sociopolitical response to arachnoiditis highlights how public domains of knowledge are largely constructed and controlled by vested interests. Implications of the data overall are discussed in terms of a cultural revolution being needed in health care to position core values around a prime focus upon patients as human beings.

‘Working with the team’ : an exploratory study of improved type 2 diabetes management in a new model of integrated primary/secondary care

This study aimed to explore how a new model of integrated primary/secondary care for type 2 diabetes management, the Brisbane South Complex Diabetes Service (BSCDS), related to improved diabetes management in a selected group of patients. We used a qualitative research design to obtain detailed accounts from the BSCDS via semi-structured interviews with 10 patients. The interviews were fully transcribed and systematically coded using a form of thematic analysis. Participants’ responses were grouped in relation to: (1) Patient-centred care; (2) Effective multiprofessional teamwork; and (3) Empowering patients. The key features of this integrated primary/secondary care model were accessibility and its delivery within a positive health care environment, clear and supportive interpersonal communication between patients and health care providers, and patients seeing themselves as being part of the team-based care. The BSCDS delivered patient-centred care and achieved patient engagement in ways that may have contributed to improved type 2 diabetes management in these participants.

Development and evaluation of a program to improve clinician and patient communication during a telehealth consultation : C.R.I.S.P. Telehealth

Introduction: The delivery of health care in the 21st century will look like no other in the past. The fast paced technological advances that are being made will need to transition from the information age into clinical practice. The phenomenon of e-Health is the over-arching form of information technology and telehealth is one arm of that phenomenon. The uptake of telehealth both in Australia and overseas, has changed the face of health service delivery to many rural and remote communities for the better, removing what is known as the tyranny of distance. Many studies have evaluated the satisfaction and cost-benefit analysis of telehealth across the organisational aspects as well as the various adaptations of clinical pathways and this is the predominant focus of most studies published to date. However, whilst comments have been made by many researchers about the need to improve and attend to the communication and relationship building aspects of telehealth no studies have examined this further. The aim of this study was to identify the patient and clinician experiences, concerns, behaviours and perceptions of the telehealth interaction and develop a training tool to assist these clinicians to improve their interaction skills. Methods: A mixed methods design combining quantitative (survey analysis and data coding) and qualitative (interview analysis) approaches was adopted. This study utilised four phases to firstly qualitatively explore the needs of clients (patients) and clinicians within a telehealth consultation then designed, developed, piloted and quantitatively and qualitatively evaluated the telehealth communication training program. Qualitative data was collected and analysed during Phase 1 of this study to describe and define the missing 'communication and rapport building' aspects within telehealth. This data was then utilised to develop a self-paced communication training program that enhanced clinicians existing skills, which comprised of Phase 2 of this study to develop the interactive program. Phase 3 included evaluating the training program with 26 clinicians and results were recorded pre and post training, whilst phase 4 was the pilot for future recommendations of this training program using a patient group within a Queensland Health setting at two rural hospitals. Results: Comparisons of pre and post training data on 1) Effective communication styles, 2) Involvement in communication training package, 3) satisfaction pre and post training, and 4) health outcomes pre and post training indicated that there were differences between pre and post training in relation to effective communication style, increased satisfaction and no difference in health outcomes between pre and post training for this patient group. The post training results revealed over half of the participants (N= 17, 65%) were more responsive to non-verbal cues and were better able to reflect and respond to looks of anxiousness and confusion from a 'patient' within a telehealth consultation. It was also found that during post training evaluations, clinicians had enhanced their therapeutic communication with greater detail to their own body postures, eye contact and presentation. There was greater time spent looking at the 'patient' with an increase of 35 second intervals of direct eye contact and less time spent looking down at paperwork which decreased by 20 seconds. Overall 73% of the clinicians were satisfied with the training program and 61% strongly agreed that they recognised areas of their communication that needed improving during a telehealth consultation. For the patient group there was significant difference post training in rapport with a mean score from 42 (SD = 28, n = 27) to 48 (SD = 5.9, n = 24). For communication comfort of the patient group there was a significant difference between the pre and post training scores t(10) = 27.9, p = .002, which meant that overall the patients felt less inhibited whilst talking to the clinicians and more understood. Conclusion: The aim of this study was to explore the characteristics of good patient-clinician communication and unmet training needs for telehealth consultations. The study developed a training program that was specific for telehealth consultations and not dependent on a 'trainer' to deliver the content. In light of the existing literature this is a first of its kind and a valuable contribution to the research on this topic. It was found that the training program was effective in improving the clinician's communication style and increased the satisfaction of patient's within an e-health environment. This study has identified some historical myths that telehealth cannot be part of empathic patient centred care due to its technology tag.

Circles of care : should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

Self-management support for people with chronic kidney disease: Patient perspectives

Background Self-management of chronic kidney disease (CKD) is crucial for health outcomes and people need to be effectively supported by healthcare professionals (HCPs). Some programmes designed to improve self-management have been implemented, but people with the disease are rarely consulted regarding what they desire from these programmes. Objectives To provide a synthesis of the literature on preferences for self-management support of people with CKD. Design An integrative review. Methods Four databases (MedLine, CINAHL, PsycARTICLES and PsycINFO) were searched using relevant search terms. Results The search strategy identified 1,913 records, of which 12 studies met inclusion criteria. Ten themes were identified as important areas to be addressed by self-management interventions. In addition, patient suggestions for implementation of such interventions are discussed. Conclusion The principles of a person-centred approach ought to frame the support provided by HCPs when supporting those with CKD to better self-manage.

Woman-centred care

Changes over the past decade have emphasised the individual service user and their relationship with the health service. Within the maternity services this has been interpreted as woman-centred care a result of key initiatives; the Winterton Report (House of Commons, 1992. Maternity Services. Second Report of the Health Committee (Winterton Report), Vol. 1. HMSO, London) and Changing Childbirth (DoH, 1993a, Changing childbirth: reports of the expert maternity group parts 1 & 2. HMSO, London). Changing Childbirth outlined key principles of the maternity services and the need for the woman (and her partner, if she wishes) to be the focus of care. The key principles are choice, continuity and control. High quality care depends on the recognition of individuals as having unique needs which continues to be reflected within contemporary policy documents (DoH, 1997, The new NHS: modern and dependable. HMSO, London). This paper presents findings related to the provision of woman-centred care from a national research and development study. The study design incorporated (i): a national survey which was undertaken with midwives, midwife supervisors and doctors; and (ii): in-depth case studies in which information was obtained through interviews with midwives, midwife supervisors, educators, managers, doctors and mothers. Midwives, at all levels, are involved in changing maternity service provision and adapting to new systems of care which aim to increase continuity of care and carer for the woman. The researchers sought to understand how woman-centred care was interpreted and experienced in practice. The findings have been used to identify the continuing educational needs of midwives, and to develop an open learning educational package to meet identified need. The curriculum was designed to enhance the move towards the provision of a more integrated woman-centred service.