Using HIT to deliver integrated care for the frail elderly in the UK: current barriers and future challenges

In this paper we briefly describe the results of a 3 year project examining the use of Health Information Technologies (e.g., electronic patient record systems) to deliver integrated care. In particular, we focus on one group of patient (the frail elderly) and efforts to design an e-health supported healthcare pathway (the frail elderly pathway – FEP). The aim of FEP is to bring together clinicians and staff from health and social care and allow them to share patient information. Our findings show that progress in delivering a fully-supported and working FEP has been slow, not least because of the difficulties experienced by healthcare staff in using current IT systems. In addition, there are many strategic and technical issues which remain unresolved (e.g., systems interoperability).

The perception of support received from breast care nurses by depressed patients following a diagnosis of breast cancer

INTRODUCTION Due to their specialist training, breast care nurses (BCNs) should be able to detect emotional distress and offer support to breast cancer patients. However, patients who are most distressed after diagnosis generally experience least support from care staff. To test whether BCNs overcome this potential barrier, we compared the support experienced by depressed and non-depressed patients from their BCNs and the other main professionals involved in their care: surgeons and ward nurses. PATIENTS AND METHODS Women with primary breast cancer (n = 355) 2–4 days after mastectomy or wide local excision, self-reported perceived professional support and current depression. Analysis of variance compared support ratings of depressed and non-depressed patients across staff types. RESULTS There was evidence of depression in 31 (9%) patients. Depressed patients recorded less surgeon and ward nurse support than those who were not depressed but the support received by patients from the BCN was high, whether or not patients were depressed. CONCLUSIONS BCNs were able to provide as much support to depressed patients as to non-depressed patients, whereas depressed patients felt less supported by surgeons and ward nurses than did non-depressed patients. Future research should examine the basis of BCNs' ability to overcome barriers to support in depressed patients. Our findings confirm the importance of maintaining the special role of the BCN.

Outcomes of newborns admitted in the intensive care unit at a public hospital

Background: We evaluated the outcome of newborns admitted in the neonatal Intensive Care Unit (ICU) in Diadema, Brazil. Methods: We evaluated 72 newborns, data were extracted from research forms, newborns` hospital records, mothers interviews, domiciliary inquiry made with the responsible for the newborn care, and paediatric accompaniment cards. Results: 48.93% presented low birth weight, 48% were considered to have normal birth weight and 2% had a birth weight higher than 4000g. Concerning gestational age, 57.44% were younger than 37 weeks old. During hospitalisation, newborn had appointments with doctors from other specialties (inter-appointments), around 40% were cardiologists. After hospital discharge 82.98% were referred to local primary health care units, and the main specialities were cardiology and neurology. Among the newborns evaluated 85.11% were accompanied by paediatric health care units. Conclusion: The implementation of a specialised newborn health accompaniment program in Brazil after ICU discharge is important for positive outcomes regarding newborns growth and development.

COMMUNICATION AND INFORMATION BARRIERS TO HEALTH ASSISTANCE FOR DEAF PATIENTS

IN BRAZIL, recent regulations require changes in private and public health systems to make special services available to deaf patients. in the present article, the researchers analyze the perceptions of 25 sign language using patients regarding this assistance. The researchers found communication difficulties between these patients and health services staff, as well as a culture clash and a harmful inability among the service providers to distinguish among the roles of companions, caretakers, and professional translator/interpreters. Thus, it became common for the patients to experience prejudice in the course of treatment and information exchange, damage to their autonomy, limits on their access to services, and reduced efficacy of therapy. The researchers conclude that many issues must be dealt with if such barriers to health access are to be overcome, in particular the worrying degree of exclusion of deaf patients from health care systems.

Communication in Smoking Cessation and Self-management : a study at Nurse-led COPD-clinics in Primary Health Care

ABSTRACTThe general aim of this thesis was to investigate behavioral change communication at nurse-led chronic obstructive pulmonary disease (COPD) clinics in primary health care, focusing on communication in self-management and smoking cessation for patients with COPD.Designs: Observational, prospective observational and experimental designs were used.Methods: To explore and describe the structure and content of self-management education and smoking cessation communication, consultations between patients (n=30) and nurses (n=7) were videotaped and analyzed with three instruments: Consulting Map (CM), the Motivational Interviewing Treatment Integrity (MITI) scale and the Client Language Assessment in Motivational Interviewing (CLAMI). To examine the effects of structured self-management education, patients with COPD (n=52) were randomized in an intervention and a control group. Patients’ quality of life (QoL), knowledge about COPD and smoking cessation were examined with a questionnaire on knowledge about COPD and smoking habits and with St. George’s Respiratory Questionnaire, addressing QoL. Results: The findings from the videotaped consultations showed that communication about the reasons for consultation mainly concerned medical and physical problems and (to a certain extent) patients´ perceptions. Two consultations ended with shared understanding, but none of the patients received an individual treatment-plan. In the smoking cessation communication the nurses did only to a small extent evoke patients’ reasons for change, fostered collaboration and supported patients’ autonomy. The nurses provided a lot of information (42%), asked closed (21%) rather than open questions (3%), made simpler (14%) rather than complex (2%) reflections and used MI non-adherent (16%) rather than MI-adherent (5%) behavior. Most of the patients’ utterances in the communication were neutral either toward or away from smoking cessation (59%), utterances about reason (desire, ability and need) were 40%, taking steps 1% and commitment to stop smoking 0%. The number of patients who stopped smoking, and patients’ knowledge about the disease and their QoL, was increased by structured self-management education and smoking cessation in collaboration between the patient, nurse and physician and, when necessary, a physiotherapist, a dietician, an occupational therapist and/or a medical social worker.Conclusion The communication at nurse-led COPD clinics rarely involved the patients in shared understanding and responsibility and concerned patients’ fears, worries and problems only to a limited extent. The results also showed that nurses had difficulties in attaining proficiency in behavioral change communication. Structured self-management education showed positive effects on patients’ perceived QoL, on the number of patients who quit smoking and on patients’ knowledge about COPD.

The core characteristics and nursing care activities in psychiatric intensive care units in Sweden

Internationally, research on psychiatric intensive care units (PICUs) commonly reportsresults from demographic studies such as criteria for admission, need for involuntary treatment, andthe occurrence of violent behaviour. A few international studies describe the caring aspect of thePICUs based specifically on caregivers’ experiences. The concept of PICU in Sweden is not clearlydefined. The aim of this study is to describe the core characteristics of a PICU in Sweden and todescribe the care activities provided for patients admitted to the PICUs. Critical incident techniquewas used as the research method. Eighteen caregivers at a PICU participated in the study bycompleting a semistructured questionnaire. In-depth interviews with three nurses and two assistantnurses also constitute the data. An analysis of the content identified four categories that characterizethe core of PICU: the dramatic admission, protests and refusal of treatment, escalating behaviours, andtemporarily coercive measure. Care activities for PICUs were also analysed and identified as controlling– establishing boundaries, protecting – warding off, supporting – giving intensive assistance, andstructuring the environment. Finally, the discussion put focus on determining the intensive aspect ofpsychiatric care which has not been done in a Swedish perspective before. PICUs were interpreted asa level of care as it is composed by limited structures and closeness in care.

Facilitators and barriers to applying a national quality registry for quality improvement in stroke care

BACKGROUND: National quality registries (NQRs) purportedly facilitate quality improvement, while neither the extent nor the mechanisms of such a relationship are fully known. The aim of this case study is to describe the experiences of local stakeholders to determine those elements that facilitate and hinder clinical quality improvement in relation to participation in a well-known and established NQR on stroke in Sweden. METHODS: A strategic sample was drawn of 8 hospitals in 4 county councils, representing a variety of settings and outcomes according to the NQR's criteria. Semi-structured telephone interviews were conducted with 25 managers, physicians in charge of the Riks-Stroke, and registered nurses registering local data at the hospitals. Interviews, including aspects of barriers and facilitators within the NQR and the local context, were analysed with content analysis. RESULTS: An NQR can provide vital aspects for facilitating evidence-based practice, for example, local data drawn from national guidelines which can be used for comparisons over time within the organisation or with other hospitals. Major effort is required to ensure that data entries are accurate and valid, and thus the trustworthiness of local data output competes with resources needed for everyday clinical stroke care and quality improvement initiatives. Local stakeholders with knowledge of and interest in both the medical area (in this case stroke) and quality improvement can apply the NQR data to effectively initiate, carry out, and evaluate quality improvement, if supported by managers and co-workers, a common stroke care process and an operational management system that embraces and engages with the NQR data. CONCLUSION: While quality registries are assumed to support adherence to evidence-based guidelines around the world, this study proposes that a NQR can facilitate improvement of care but neither the registry itself nor the reporting of data initiates quality improvement. Rather, the local and general evidence provided by the NQR must be considered relevant and must be applied in the local context. Further, the quality improvement process needs to be facilitated by stakeholders collaborating within and outside the context, who know how to initiate, perform, and evaluate quality improvement, and who have the resources to do so.

Life situations and the care burden for stroke pa­tients and their informal caregivers in a prospective cohort study

Background. The purpose of this study was to analyse whether the parallel life situation between stroke patients and their informal caregivers (dyads) shown in cross-sectional studies prevails also in a longitudinal perspective. Methods. A total of 377 Swedish stroke patients, aged ‡65 years, and their 268 informal caregivers were followed from hospital admission and one year on. Analyses were based on patient interviews, functional ability (MMSE) score, Nottingham Health Profile (NHP) score, Hospital Anxiety and Depression (HAD) score, self-rated health score, and the Gothenburg Quality of Life (GQL) activity score. Similar information was obtained by postal questionnaires from informal caregivers, also including information on the nature and amount of assistance provided and on Caregiver Burden (CB) score. Results. Before index admission informal caregivers provided care on average 5 h per week and after discharge 11 h per week (P < 0.0001). Support volume was associated with patient sex (more for men), low patient’s functional ability, low received municipal social service support, closeness of patient–caregiver relation, and short distance to patient’s home. Significant positive associations within the dyads were found for HAD anxiety score (P < 0.0001), total NHP score (P < 0.0001), and GQL activity score (P < 0.0001) after adjustment for patient’s age, sex, functional ability, and patient–caregiver relationship. CB score increased with amount of informal caregiver support, patient’s age, and with low functional ability and low amount of municipal social service support. All these associations were constant across time. Conclusions. There was an association within the dyads regarding anxiety score, NHP score, and activity score. CB score was generally high.

Usual clinical practice for early supported discharge after stroke with continued rehabilitation at home : an observational comparative study

Introduction: Based on randomised controlled trials, evidence exists that early supported discharge (ESD) from the hospital with continued rehabilitation at home has beneficial effects after stroke; however, the effects of ESD service in regular clinical practice have not been investigated. The purpose of the current study was to compare ESD service with conventional rehabilitation in terms of patient outcomes, caregiver burden at 3 and 12 months and the use and costs of healthcare during the first year after stroke. Material and methods: This study was a subgroup analysis of a longitudinal observational study of patients who received care in the stroke unit at Karolinska University Hospital in Sweden. Patients who met the inclusion criteria for ESD in previous experimental studies were included. The patients were referred to available rehabilitation services at discharge, and comparisons between those who received ESD service (the ESD group, n = 40) and those who received conventional rehabilitation (the NoESD group, n = 110) were performed with regard to independence in activities of daily living (ADL), the frequency of social activities, life satisfaction, and caregiver burden and the use and costs of healthcare during the first year after stroke. Results: At 3 and 12 months, no differences were observed with regard to patient outcomes; however, ESD was associated with a lower caregiver burden (p = 0.01) at 12 months. The initial length of stay (LOS) at the hospital was 8 days for the ESD group and 15 days for the NoESD group (p = 0.02). The median number of outpatient rehabilitation contacts was 20.5 for the ESD group (81% constituting ESD service) and 3 for the NoESD group (p<0.001). There was no difference between the groups with regard to overall healthcare costs. Conclusions: ESD service in usual clinical practice renders similar health benefits as conventional rehabilitation but a different pattern of resource use and with released capacity in acute stroke care.

Unlicensed personnel administering medications to older persons living at home : a challenge for social and care services

BACKGROUND: Administration of medication to care recipients is delegated to home-care assistants working in the municipal social care, alongside responsibility for providing personal assistance for older people. Home-care assistants have practical administration skills, but lack formal medical knowledge. AIM: The aim of this study was to explore how home-care assistants perceive administration of medication to older people living at home, as delegated to them in the context of social care. METHODS: Four focus groups consisting of 19 home-care assistants were conducted. Data were analysed using qualitative content analysis. RESULTS: According to home-care assistants, health and social care depends on delegation arrangements to function effectively, but in the first place it relieves a burden for district nurses. Even when the delegation had expired, administration of medication continued, placing the statutes of regulation in a subordinate position. There was low awareness among home-care assistants about the content of the statutes of delegation. Accepting delegation to administer medications has become an implicit prerequisite for social care work in the municipality. CONCLUSIONS: Accepting the delegation to administer medication was inevitable and routine. In practice, the regulating statute is made subordinate and consequently patient safety can be threatened. The organisation of health and social care relies on the delegation arrangement to meet the needs of a growing number of older home-care recipients. IMPLICATIONS FOR PRACTICE: This is a crucial task which management within both the healthcare professions and municipal social care needs to address, to bridge the gap between statutes and practice, to create arenas for mutual collaboration in the care recipients' best interest and to ensure patient safety.

Older people's experience of utilisation and administration of medicines in a health- and social care context

BACKGROUND: People living at home who lack ability to manage their medicine are entitled to assistance to improve adherence provided by a home care assistant employed by social care. AIM: The aim was to describe how older people with chronic diseases, living at home, experience the use and assistance of administration of medicines in the context of social care. DESIGN: A qualitative descriptive study. METHODS: Ten participants (age 65+) living at home were interviewed in the participants' own homes. Latent content analysis was used. FINDINGS: The assistance eases daily life with regard to practical matters and increases adherence to a medicine regimen. There were mixed feelings about being dependent on assistance; it interferes with self-sufficiency at a time of health transition. Participants were balancing empowerment and a dubious perception of the home care assistants' knowledge of medicine and safety. Physicians' and district nurses' professional knowledge was a safety guarantee for the medicine process. CONCLUSIONS: Assistance eases daily life and medicine regimen adherence. Dependence on assistance may affect self-sufficiency. Perceived safety varied relating to home care assistants' knowledge of medicine. RELEVANCE TO CLINICAL PRACTICE: A well-functioning medicine assistance is crucial to enable older people to remain at home. A person-centred approach to health- and social care delivery is efficient and improve outcome for the recipient of care.

Estrutura e desafios de financiamento do programa Abrigos Solidários: Liga Solidária

A prestação do serviço de acolhimento institucional para crianças e adolescentes ainda é um grande desafio para as organizações que realizam este trabalho, não só pelas atuais mudanças do perfil dos abrigados, que passa a exigir novas respostas institucionais, com pela fragilidade da estrutura de financiamento público. Desse modo, o presente trabalho tem como propósito identificar as principais fragilidades da estrutura de financiamento público desse serviço, a partir do estudo de caso do Programa Abrigos Solidárias da Liga Solidária, organização social sem fins lucrativos que mantém três abrigos via convênio firmado com a Secretaria Municipal de Assistência e Desenvolvimento Social de São Paulo (SMADS). Para tanto, foi realizada pesquisa qualitativa baseada em entrevistas semi estruturadas junto a gestores e técnicos da Liga Solidária, bem como uma revisão bibliográfica sobre os principais marcos da Política Nacional de Assistência Social, referências sobre a Reforma Gerencial do Estado e o funcionamento básico do Sistema Único de Saúde (SUS). Com base nos dados encontrados na pesquisa, foi possível realizar um diagnóstico da atual estrutura de financiamento público e complementar que subsidiou a elaboração de uma proposta integrada de aperfeiçoamento da estrutura de financiamento desse serviço respaldado por uma análise comparativa com o SUS e resgatando as propostas de contratualização previstas na Reforma Gerencial do Estado de 1995.

Essays on health care reform, wealth inequality, and demography

This thesis contains three chapters. The first chapter uses a general equilibrium framework to simulate and compare the long run effects of the Patient Protection and Affordable Care Act (PPACA) and of health care costs reduction policies on macroeconomic variables, government budget, and welfare of individuals. We found that all policies were able to reduce uninsured population, with the PPACA being more effective than cost reductions. The PPACA increased public deficit mainly due to the Medicaid expansion, forcing tax hikes. On the other hand, cost reductions alleviated the fiscal burden of public insurance, reducing public deficit and taxes. Regarding welfare effects, the PPACA as a whole and cost reductions are welfare improving. High welfare gains would be achieved if the U.S. medical costs followed the same trend of OECD countries. Besides, feasible cost reductions are more welfare improving than most of the PPACA components, proving to be a good alternative. The second chapter documents that life cycle general equilibrium models with heterogeneous agents have a very hard time reproducing the American wealth distribution. A common assumption made in this literature is that all young adults enter the economy with no initial assets. In this chapter, we relax this assumption – not supported by the data – and evaluate the ability of an otherwise standard life cycle model to account for the U.S. wealth inequality. The new feature of the model is that agents enter the economy with assets drawn from an initial distribution of assets. We found that heterogeneity with respect to initial wealth is key for this class of models to replicate the data. According to our results, American inequality can be explained almost entirely by the fact that some individuals are lucky enough to be born into wealth, while others are born with few or no assets. The third chapter documents that a common assumption adopted in life cycle general equilibrium models is that the population is stable at steady state, that is, its relative age distribution becomes constant over time. An open question is whether the demographic assumptions commonly adopted in these models in fact imply that the population becomes stable. In this chapter we prove the existence of a stable population in a demographic environment where both the age-specific mortality rates and the population growth rate are constant over time, the setup commonly adopted in life cycle general equilibrium models. Hence, the stability of the population do not need to be taken as assumption in these models.

Sistematização da assistência de enfermagem (SAE) em um hospital pediátrico de ensino: uma pesquisa-ação

The incessant search if nurse for qualify nursing care makes the Nursing Assistance Systematization, a current topic of discussion throughout the country, not only in order to comply the legal requirements of their practice, but especially by the expected benefits of its application. In this meaning, this research had a qualitative approach, developed for a way of research-action. The general purpose was to analyze the change in the nursing practices in a pediatric teaching hospital, based on construction and implementation of Nursing Assistance Systematization by the nursing team. The results had the thematic analysis of Paulo Freire and were shown in the form of reports. To achieve these purposes, it began by steps pre-trial, to review the charts of the institution and an approach with the managers. In the situational diagnosis of nursing practices without the systematization followed by applying a questionnaire with a nursing team and a focal group with nurses. These ways supported the implementation stage of the Nursing Assistance Systematization which developed actions associate such as focal group with the nurses about the nursing history, capacity with the nursing team about the Nursing Assistance Systematization, development, application and reworking of printed, and discussions in the small groups. The evaluations of the changes after the actions of the research occurred through individual interview with the nurses, to check the results. The charts review confirmed the deficit in the records performed by the nurse on the chart, which reinforced the need for implementation of Nursing Assistance Systematization, an argument used on the meeting with the managers, who promptly agree with the search. The questionnaire and the focal group with the nurses reveal a process of nursing work without systematization, showing gaps in practices, but also obtained relate of expectations of improvements in quality of care as of Nursing Assistance Systematization, furnishing data to the development of ways following-up. The prints were gradually used and modified as the team understood the Nursing Assistance Systematization and its purposes through capacity course. The final evaluation pointed to the partial implementation of the stages of Nursing Assistance Systematization had been institutionalized at the history and the development of nursing, beyond difficulties with diagnosis and prescription of nursing, in later representing a paradigm shift. This search collaborated to change the view about the Nursing Assistance Systematization by nursing team at the institution had been revealed through introduction of new practices in the process of nursing work, as examination of physical exam of the patient, the interview in the admission of customers on service and the daily monitoring by nursing through development of nursing. Before addition, it was noted which the purposes of this search were achieved, since were analyzed the changes in the nursing practices with the systematization. The research-action achieved proposes of the involvement of nursing team in changing their practices. This search contributed to the implementation of the Nursing Assistance Systematization in a pediatric teaching hospital and showed which is possible to seek resolution of problems when the objective is of the group and gave access for further searches within this theme

O psicólogo e os serviços de acolhimento institucional para crianças e adolescentes

The Shelters are responsible for caring for children and adolescents whose families or guardians are temporarily unable to fulfill his role as care and protection. The activities to be developed by psychologists in these services are greatly important for the elaboration and development of political- pedagogical project of the same, and for reasons pertaining to the present and future of children and adolescents received judgments. The psychologist puts up the challenge of contributing to a better care of children, also cooperating with the implementation of the new care standards of childcare. The aim of this study was to investigate the role of the professional psychologist in assistance to children and adolescents in 13 Shelters in the Metropolitan Region of Natal/RN. For both set out to make visits to the institutions to know how it is organized the field work of the psychologist, his routine work and activities developed. Nine psychologists interviewed according to a semi-structured interview script. The data analysis is supported by the theoretical aspects of dialectical materialism historical and theme content analysis was used. Results were presented from three angles: psychologists and institutional framework; activities, resources and methods of work; psychologists and legal frameworks of the Institutional Hospitality. The study points out the recent entry of the psychologist in Shelters, combined with considerable turnover of these professionals. This work has been organized through the Individualized Service Plan, prioritizing the return to family of origin. Moreover, in general, perform joints with the service network, reporting, individual consultations and follow-adoption processes . Staff members, however, feel a lack of specific and continuing training on special protection, including due to the distance between the proposed theory and practice. It was thus observed a movement of psychologists distance themselves from welfare or repressive practices, however the structural difficulties of services and lack of continuing education appear to limit the development of a performance focused on the transformation of the reality of children and adolescents treated and their families