Modelling the development of an online learning resource by health care professionals

The aim of this study was to model the process of development for an Online Learning Resource (OLR) by Health Care Professionals (HCPs) to meet lymphoedema-related educational needs, within an asset-based management context. Previous research has shown that HCPs have unmet educational needs in relation to lymphoedema but details on their specific nature or context were lacking. Against this background, the study was conducted in two distinct but complementary phases. In Phase 1, a national survey was conducted of HCPs predominantly in community, oncology and palliative care services, followed by focus group discussions with a sample of respondents. In Phase 2, lymphoedema specialists (LSs) used an action research approach to design and implement an OLR to meet the needs identified in Phase 1. Study findings were analysed using descriptive statistics (Phase 1), and framework, thematic and dialectic analysis to explore their potential to inform future service development and education theory. Unmet educational need was found to be specific to health care setting and professional group. These resulted in HCPs feeling poorly-equipped to diagnose and manage lymphoedema. Of concern, when identified, lymphoedema was sometimes buried for fear of overwhelming stretched services. An OLR was identified as a means of addressing the unmet educational needs. This was successfully developed and implemented with minimal additional resources. The process model created has the potential to inform contemporary leadership theory in asset-based management contexts. This doctoral research makes a timely contribution to leadership theory since the resource constraints underpinning much of the contribution has salience to current public services. The process model created has the potential to inform contemporary leadership theory in asset-based management contexts. Further study of a leadership style which incorporates cognisance of Cognitive Load Theory and Self-Determination Theory is suggested. In addition, the detailed reporting of process and how this facilitated learning for participants contributes to workplace education theory

Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.

Psychosocial Risk Factors, Interventions, and Comorbidity in Patients with Non-Specific Low Back Pain in Primary Care: Need for Comprehensive and Patient-Centered Care

International audience

Using Needs Assessment to Understand Continuing Disability in Patients with Enduring Mental Illness. Implications for Considerations of Service Development

Particular strengths of the MRC Needs for Care Assessment Schedule have been used to investigate the treatment status of patients with persistent psychiatric disability in ways that other needs assessment tools are unable to. One hundred and seventy-nine such patients from three settings; a private sector psychiatric hospital, two public sector day hospitals situated in the same town, and a high security hospital, were found to have a high level of need. Although there were differences between settings, overall these needs were well met in all three. The high level of persistent disability found amongst these patients could not be attributed to failure on the part of those treating them to use the best available methods, or to failures to comply or engage with treatment on the patient's part. In some two thirds of instances persistent disability was best explained by the fact that even the most suitable available treatments have to be considered only partially effective.

New Ways of Working in Acute Care: A Case for Change

This position paper focuses on the current tensions and challenges of aligning inpatient care with innovations in mental health services. It argues that a cultural shift is required within inpatient services. Obstacles to change including traditional perceptions of the role and responsibilities of the psychiatrist are discussed. The paper urges all staff working in acute care to reflect on the service that they provide, and to consider how the adoption of new ways of working might revolutionise the organisational culture. This cultural shift offers inpatient staff the opportunity to fully utilise their expertise. New ways of working may be perceived as a threat to existing roles and responsibilities or as an exciting opportunity for professional development with increased job satisfaction. Above all, the move to new ways of working, which is gathering pace throughout the UK, could offer service users a quality of care that meets their needs and expectations.

Tackling health inequalities in primary care: an exploration of GPs’ experience at the frontline

In Scotland, life expectancy and health outcomes are strongly tied to socioeconomic status. Specifically, socioeconomically deprived areas suffer disproportionately from high levels of premature multimorbidity and mortality. To tackle these inequalities in health, challenges in the most deprived areas must be addressed. One avenue that merits attention is the potential role of general medical practitioners (GPs) in helping to address health inequalities, particularly due to their long-term presence in deprived communities, their role in improving patient and population health, and their potential advocacy role on behalf of their patients. GPs can be seen as what Lipsky calls ‘street-level bureaucrats’ due to their considerable autonomy in the decisions they make surrounding individual patient needs, yet practising under the bureaucratic structure of the NHS. While previous research has examined the applicability of Lipsky’s framework to the role of GPs, there has been very little research exploring how GPs negotiate between the multiple identities in their work, how GPs ‘socially construct’ their patients, how GPs view their potential role as ‘advocate’, and what this means in terms of the contribution of GPs to addressing existing inequalities in health. Using semi-structured interviews, this study explored the experience and views of 24 GPs working in some of Scotland’s most deprived practices to understand how they might combat this growing health divide via the mitigation (and potential prevention) of existing health inequalities. Participants were selected based on several criteria including practice deprivation level and their individual involvement in the Deep End project, which is an informal network comprising the 100 most deprived general practices in Scotland. The research focused on understanding GPs’ perceptions of their work including its broader implications, within their practice, the communities within which they practise, and the health system as a whole. The concept of street-level bureaucracy proved to be useful in understanding GPs’ frontline work and how they negotiate dilemmas. However, this research demonstrated the need to look beyond Lipsky’s framework in order to understand how GPs reconcile their multiple identities, including advocate and manager. As a result, the term ‘street-level professional’ is offered to capture more fully the multiple identities which GPs inhabit and to explain how GPs’ elite status positions them to engage in political and policy advocacy. This study also provides evidence that GPs’ social constructions of patients are linked not only to how GPs conceptualise the causes of health inequalities, but also to how they view their role in tackling them. In line with this, the interviews established that many GPs felt they could make a difference through advocacy efforts at individual, community and policy/political levels. Furthermore, the study draws attention to the importance of practitioner-led groups—such as the Deep End project—in supporting GPs’ efforts and providing a platform for their advocacy. Within this study, a range of GPs’ views have been explored based on the sample. While it is unclear how common these views are amongst GPs in general, the study revealed that there is considerable scope for ‘political GPs’ who choose to exercise discretion in their communities and beyond. Consequently, GPs working in deprived areas should be encouraged to use their professional status and political clout not only to strengthen local communities, but also to advocate for policy change that might potentially affect the degree of disadvantage of their patients, and levels of social and health inequalities more generally.

Is facility based neonatal care in low resource setting keeping pace? A glance at Uganda’s National Referral Hospital.

Objectives: To identify reasons for neonatal admission and death with the aim of determining areas needing improvement. Method: A retrospective chart review was conducted on records for neonates admitted to Mulago National Referral Hospital Special Care Baby Unit (SCBU) from 1st November 2013 to 31st January 2014. Final diagnosis was generated after analyzing sequence of clinical course by 2 paediatricians. Results: A total of 1192 neonates were admitted. Majority 83.3% were in-born. Main reasons for admissions were prematurity (37.7%) and low APGAR (27.9%).Overall mortality was 22.1% (Out-born 33.6%; in born 19.8%). Half (52%) of these deaths occurred in the first 24 hours of admission. Major contributors to mortality were prematurity with hypothermia and respiratory distress (33.7%) followed by birth asphyxia with HIE grade III (24.6%) and presumed sepsis (8.7%). Majority of stable at risk neonates 318/330 (i.e. low APGAR or prematurity without comorbidity) survived. Factors independently associated with death included gestational age <30 weeks (p 0.002), birth weight <1500g (p 0.007) and a 5 minute APGAR score of < 7 (p 0.001). Neither place of birth nor delayed and after hour admissions were independently associated with mortality. Conclusion and recommendations: Mortality rate in SCBU is high. Prematurity and its complications were major contributors to mortality. The management of hypothermia and respiratory distress needs scaling up. A step down unit for monitoring stable at risk neonates is needed in order to decongest SCBU.

Evaluation use within a humanitarian non-governmental organization’s health care user-fee exemption program in West Africa

L’évaluation de l’action humanitaire (ÉAH) est un outil valorisé pour soutenir l’imputabilité, la transparence et l’efficience de programmes humanitaires contribuant à diminuer les inéquités et à promouvoir la santé mondiale. L’EAH est incontournable pour les parties prenantes de programme, les bailleurs de fonds, décideurs et intervenants souhaitant intégrer les données probantes aux pratiques et à la prise de décisions. Cependant, l’utilisation de l’évaluation (UÉ) reste incertaine, l’ÉAH étant fréquemment menée, mais inutilisé. Aussi, les conditions influençant l’UÉ varient selon les contextes et leur présence et applicabilité au sein d’organisations non-gouvernementales (ONG) humanitaires restent peu documentées. Les évaluateurs, parties prenantes et décideurs en contexte humanitaire souhaitant assurer l’UÉ pérenne détiennent peu de repères puisque rares sont les études examinant l’UÉ et ses conditions à long terme. La présente thèse tend à clarifier ces enjeux en documentant sur une période de deux ans l’UÉ et les conditions qui la détermine, au sein d’une stratégie d’évaluation intégrée au programme d’exemption de paiement des soins de santé d’une ONG humanitaire. L’objectif de ce programme est de faciliter l’accès à la santé aux mères, aux enfants de moins de cinq ans et aux indigents de districts sanitaires au Niger et au Burkina Faso, régions du Sahel où des crises alimentaires et économiques ont engendré des taux élevés de malnutrition, de morbidité et de mortalité. Une première évaluation du programme d’exemption au Niger a mené au développement de la stratégie d’évaluation intégrée à ce même programme au Burkina Faso. La thèse se compose de trois articles. Le premier présente une étude d’évaluabilité, étape préliminaire à la thèse et permettant de juger de sa faisabilité. Les résultats démontrent une logique cohérente et plausible de la stratégie d’évaluation, l’accessibilité de données et l’utilité d’étudier l’UÉ par l’ONG. Le second article documente l’UÉ des parties prenantes de la stratégie et comment celle-ci servit le programme d’exemption. L’utilisation des résultats fut instrumentale, conceptuelle et persuasive, alors que l’utilisation des processus ne fut qu’instrumentale et conceptuelle. Le troisième article documente les conditions qui, selon les parties prenantes, ont progressivement influencé l’UÉ. L’attitude des utilisateurs, les relations et communications interpersonnelles et l’habileté des évaluateurs à mener et à partager les connaissances adaptées aux besoins des utilisateurs furent les conditions clés liées à l’UÉ. La thèse contribue à l’avancement des connaissances sur l’UÉ en milieu humanitaire et apporte des recommandations aux parties prenantes de l’ONG.

Provision of care services for rheumatic and musculoskeletal diseases-related foot and ankle problems: a survey from sixteen european countries

Background: The increased prevalence of foot and ankle pathologies in Rheumatic and Musculoskeletal diseases (RMDs) is well documented1, however the provision of foot & ankle (F&A) healthcare services for people with RMDs in Europe has not been evaluated. Objectives: To assess the current healthcare systems for providing foot & ankle healthcare services for people with RMDs in Europe. Methods: A survey was undertaken to evaluate current provision of F&A health care services for people with RMDs across Europe. A questionnaire was distributed to all 22 country presidents representing HP associations within EULAR. The questionnaire used was developed and piloted (in 7 countries) by the EULAR F&A Study Group, and structured to capture the provision and type of F&A services for people with RMDs. When the HP presidents felt unable to answer specific questions they were encouraged to consult a colleague who may be better placed to provide the answers. Results: Sixteen questionnaires were completed (Norway, Ireland, Sweden, Hungary, Netherlands, UK, Denmark, Portugal, Italy, Switzerland, Austria, France, Czech Republic, Spain, Belgium, Malta). Of the 16, 13 respondents indicated provision of F&A health care services in their country, but only three countries had services specialising in RMD-related F&A problems (Netherlands, UK, Malta). The professions providing the care for patients with RMD-related F&A problems were different depending on the pathology and the country (Table1). Podiatrists provided care for F&A pain and deformity problems in 11 countries, but provided F&A ulcer care in only 8 countriesConclusions: Only 3 countries have F&A health care services specialised to the needs of people with RMDs. The professions providing the care varied between countries, and also depended on the F&A pathology. Interestingly, F&A healthcare services were provided by professions that do not solely specialised in F&A care. Further research is needed to assess the variation of F&A healthcare services between and within European countries and the impact on healthcare of various F&A healthcare service designs. References: Woodburn, J. & Helliwell, P. Foot problems in rheumatology. Rheumatology 36, 932-934 (1997).

Assessment of laboratory test utilization for HIV/AIDS care in urban ART clinics of Lilongwe, Malawi

Background The 2011 Malawi HIV guidelines promote CD4 monitoring for pre-ART assessment and considering HIVRNA monitoring for ART response assessment, while some clinics used CD4 for both. We assessed clinical ordering practices as compared to guidelines, and determined whether the samples were successfully and promptly processed. Methods We conducted a retrospective review of all patients seen in from August 2010 through July 2011,, in two urban HIV-care clinics that utilized 6-monthly CD4 monitoring regardless of ART status. We calculated the percentage of patients on whom clinicians ordered CD4 or HIVRNA analysis. For all samples sent, we determined rates of successful labprocessing, and mean time to returned results. Results Of 20581 patients seen, 8029 (39%) had at least one blood draw for CD4 count. Among pre-ART patients, 2668/2844 (93.8%) had CD4 counts performed for eligibility. Of all CD4 samples sent, 8082/9207 (89%) samples were successfully processed. Of those, mean time to processing was 1.6 days (s.d 1.5) but mean time to results being available to clinician was 9.3 days (s.d. 3.7). Regarding HIVRNA, 172 patients of 17737 on ART had a blood draw and only 118/213 (55%) samples were successfully processed. Mean processing time was 39.5 days (s.d. 21.7); mean time to results being available to clinician was 43.1 days (s.d. 25.1). During the one-year evaluated, there were multiple lapses in processing HIVRNA samples for up to 2 months. Conclusions Clinicians underutilize CD4 and HIVRNA as monitoring tools in HIV care. Laboratory processing failures and turnaround times are unacceptably high for viral load analysis. Alternative strategies need to be considered in order to meet laboratory monitoring needs.

‘Failure to maintain’: care rationing and the clinical and financial burden of nurse sensitive hospital-acquired complications in complex older patients

Background: The ageing population, with concomitant increase in chronic conditions, is increasing the presence of older people with complex needs in hospital. People with dementia are one of these complex populations and are particularly vulnerable to complications in hospital. Registered nurses can offer simultaneous assessment and intervention to prevent or mitigate hospital-acquired complications through their skilled brokerage between patient needs and hospital functions. A range of patient outcome measures that are sensitive to nursing care has been tested in nursing work environments across the world. However, none of these measures have focused on hospitalised older patients. Method: This thesis explores nursing-sensitive complications for older patients with and without dementia using an internationally recognised, risk-adjusted patient outcome approach. Specifically explored are: the differences between rates of complications; the costs of complications; and cost comparisons of patient complexity. A retrospective cohort study of an Australian state’s 2006–07 public hospital discharge data was utilised to identify patient episodes for people over age 50 (N=222,440) where dementia was identified as a primary or secondary diagnosis (N=44,422). Extra costs for patient episodes were estimated based on length of stay (LOS) above the average for each patient’s Diagnosis Related Group (DRG) (N=157,178) and were modelled using linear regression analysis to establish the strongest patient complexity predictors of cost. Results: Hospitalised patients with a primary or secondary diagnosis of dementia had higher rates of complications than did their same-age peers. The highest rates and relative risk for people with dementia were found in four key complications: urinary tract infections; pressure injuries; pneumonia, and delirium. While 21.9% of dementia patients (9,751/44,488, p<0.0001) suffered a complication, only 8.8% of non-dementia patients did so (33,501/381,788, p<0.0001), giving dementia patients a 2.5 relative risk of acquiring a complication (p<0.0001). These four key complications in patients over 50 both with and without dementia were associated with an eightfold increase in length of stay (813%, or 3.6 days/0.4 days) and double the increased estimated mean episode cost (199%, or A$16,403/ A$8,240). These four complications were associated with 24.7% of the estimated cost of additional days spent in hospital in 2006–07 in NSW (A$226million/A$914million). Dementia patients accounted for 22.0% of these costs (A$49million/A$226million) even though they were only 10.4% of the population (44,488/426,276 episodes). Hospital-acquired complications, particularly for people with a comorbidity of dementia, cost more than other kinds of inpatient complexity but admission severity was a better predictor of excess cost. Discussion: Four key complications occur more often in older patients with dementia and the high rate of these complications makes them expensive. These complications are potentially preventable. However, the care that can prevent them (such as mobility, hydration, nutrition and communication) is known to be rationed or left unfinished by nurses. Older hospitalised people who have complex needs, such as those with dementia, are more likely to experience care rationing as their care tends to take longer, be less predictable and less curative in nature. This thesis offers the theoretical proposition that evidence-based nursing practices are rationed for complex older patients and that this rationed care contributes to functional and cognitive decline during hospitalisation. This, in turn, contributes to the high rates of complications observed. Thus four key complications can be seen as a ‘Failure to Maintain’ complex older people in hospital. ‘Failure to Maintain’ is the inadequate delivery of essential functional and cognitive care for a complex older person in hospital resulting in a complication, and is recommended as a useful indicator for hospital quality. Conclusions: When examining extra length of stay in hospital, complications and comorbid dementia are costly. Complications are potentially preventable, and dementia care in hospitals can be improved. Hospitals and governments looking to decrease costs can engage in risk-reduction strategies for common nurse sensitive complications such as healthy nursing work environments that minimise nurses’ rationing of functional and cognitive care. The conceptualisation of complex older patients as ‘business as usual’ rather than a ‘burden’ is likely necessary for sustainable health care services of the future. The use of the ‘Failure to Maintain’ indicators at institution and state levels may aid in embedding this approach for complex older patients into health organisations. Ongoing investigation is warranted into the relationships between the largest health services expense (hospitals), the largest hospital population (complex older patients), and the largest hospital expense (nurses). The ‘Failure to Maintain’ quality indicator makes a useful and substantive contribution to further clinical, administrative and research developments.

Whose health, whose care, whose say? Some comments on public involvement in new NHS commissioning arrangements

Recent health policy in England has demanded greater involvement of patients and the public in the commissioning of health and social care services. Public involvement is seen as a means of driving up service quality, reducing health inequalities and achieving value in commissioning decisions. This paper presents a summary and analysis of the forms that public involvement in commissioning are to take, along with empirical analysis from a qualitative study of service-user involvement. It is argued that the diversity of constituencies covered by the notion of ‘public involvement’, and the breadth of aims that public involvement is expected to achieve, require careful disaggregation. Public involvement in commissioning may encompass a variety of interest groups, whose inputs may include population needs assessment, evaluation of service quality, advocacy of the interests of a particular patient group or service, or a combination of all of these. Each of these roles may be legitimate, but there are significant tensions between them. The extent to which the structures for public involvement proposed recognize these possible tensions is arguably limited. Notably, new Local Involvement Networks (LINks), which will feed into commissioning decisions, are set as the arbiters of these different interests, a demanding role which will require considerable skill, tenacity and robustness if it is to be fulfilled effectively.

Management of the clinical issue of constipation with abdominal complaints in adults: a national survey of Primary Care physicians and gastroenterologists

Irritable bowel syndrome and functional constipation represent a relevant and common health issue. However, real-world clinical practice includes patients with constipation who may or may not have other abdominal complaints (pain, bloating, abdominal discomfort) with variable frequency. The goal of the present study was to obtain information on the workload entailed by patients with constipation and associated abdominal complaints, predominant clinical behaviors, education needs, and potential daily practice aids both in Primary Care and gastroenterology settings. The clinical behavior of doctors is generally similar at both levels, despite differences in healthcare approach: use of empiric therapies and clinically guided diagnostic tests, with some differences in colonoscopy use (not always directly accessible from Primary Care). Regarding perceptions, general support and osmotic laxatives are most valued by PC doctors, whereas osmotic laxatives, combined laxatives, and linaclotide are most valued by GE specialists. Furthermore, over half of respondents considered differentiating both diagnoses as challenging. Finally, considerable education needs are self-acknowledged at both levels, as is a demand for guidelines and protocols to help in managing this issue in clinical practice. A strength of this study is its providing a joint photograph of the medical approach and the perceptions of constipation with abdominal discomfort from a medical standpoint. Weaknesses include self-declaration (no formal validation) and a response rate potentially biased by professional motivation.

"I’ll call you when we are ready" (One family’s experience of critical care and end of life decision making)

The purpose of this paper is to explore through narrative accounts one family's expérience of critical care, after the admission of a family member to an Intensive Care Unit (ICU) and their subséquent death five weeks later. Numerous studies support the need for effective communication and clear information to be given to the family. In this instance it was évident from their stories that there were numerous barriers to communication, including language and a lack of insight into the needs of the family. Many families do not understand the complexities of nursing care in an ICU so lack of communication by nursing staff was identified as uncaring behavior and encounters. Facilitating a family's proximity to a dying patient and encouraging them to participate in care helps to maintain some sensé of personal control. Despite a commitment to involving family members in care, which was enshrined in the Unit Philosophy, relatives were banished to the waiting room for hours. They experienced feelings of powerlessness and helplessness as they waited with other relatives for news following investigations or until 'the doctor had completed his rounds'. Explanations of "we must make 'the patient' comfortable" was no consolation for those who wished to be involved in care. The words "I'il call you when we are ready" became a mantra to the forgotten families who waited patiently for those with power to admit them to the ICU. Implications are this family felt they were left alone to cope with the traumatic expériences leading up to and surrounding the death. They felt mainly supported by the priest, who not only administered the last rites but provided spiritual support to the family and dealt sensitively with many issues. Paternalism in décision making when there is a moral obligation to ensure that discussions on end of life dilemmas are an inclusive process with families, doctors, nurses was not understood, therefore it caused conflict within the family over EOL décision making. The family felt that the opportunity to share expériences through telling and retelling their stories would enable them to reconfigure the past and create purpose in the future.

A national referral of an integrated network of continuing care a study case

This study aims to characterize the National Long-Term Care Network (NL-TCN) users. The Portuguese National Health Service, was restructured in 2006 with the creation of the National Long-Term Care Network to respond to new health and social needs concerning the continuity of care. Objectives- Analyse the sociodemographic profile of the network users and the review of hospital, local and regional management procedures. Methods-we used various methods of observational or experimental nature (data processing and presentation of results with the program Statistical Package for Social Sciences, version 20, descriptive statistics (frequencies, crosstabs and test chi-square)). The Pearson correlation test showed a positive correlation between time procedures at the local and regional management and hospital’s length of stay. Results- from a sample of 805 cases, 595 (74%) were admitted in the NL-TCN, a rate lower than the national average (86%). Almost half of the sample was admitted in Rehabilitation Units (46%), while nationally the highest number of admissions was in Home Care Teams (30%). The average time from hospital referral to network admission was 9.73 days with a positive correlation between referred network management procedures and hospital length of stay. Conclusions- For specialized units, the maximum waiting times were for the Long-Term and Support Units (mean 30.27 days) and the minimum waiting times were for Home Care Teams (mean 5.57 days). The average time between the local and regional management was 3.59 days. Almost 90% of referrals were orthopaedics, internal medicine and neurology and Network users were mostly elderly (average 75 years old), female and married. Most users were admitted to inpatient units (78%) and only 15% remained in their home town.