O FISIOTERAPEUTA, O PACIENTE E A DOENÇA

A visão biopsicossocial de homem é de fundamental importância para que os fisioterapeutas sejam capazes de atuar com seus pacientes, de forma global, sem focar a atenção apenas à doença, mas sim à pessoa doente. A compreensão acerca da profissão e dos conceitos de saúde-doença e paciente, também se faz necessária para que esses profissionais possam considerar sua intervenção num âmbito mais amplo do que a reabilitação. O objetivo deste trabalho é investigar a compreensão que os alunos do último ano de Fisioterapia de uma Universidade privada de São Paulo têm sobre saúde-doença, paciente, Fisioterapia e relacionamento fisioterapeuta-paciente e como associam estas compreensões aos modelos de saúde existentes. Para isso toma por base autores da Psicologia da Saúde que defendem uma visão biopsicossocial de homem, assim como autores da Fisioterapia e Medicina que escrevem sobre os modelos adotados nos currículos de formação dos profissionais da saúde. Foram realizadas 10 entrevistas semi-dirigidas com os alunos, apresentando questões a respeito dos temas em questão. Os resultados foram analisados de forma qualitativa através da construção de categorias de análise visando responder aos objetivos da pesquisa. Conclui-se que os alunos percebem alguns aspectos psicológicos e sociais do paciente, mas não de forma clara e, na maioria dos casos, este conhecimento se dá através de conhecimentos que não foram adquiridos na Universidade. Esta, apesar de fornecer os conteúdos para a formação mais humana do fisioterapeuta, não alcança os objetivos ao final do curso, já que os alunos oscilam entre os modelos biomédico e biopsicossocial

Connecting a sociology of childhood perspective with the study of child health, illness and wellbeing:introduction

This chapter focuses on concepts and theoretical points of departure found in child health and wellbeing studies. Firstly, seeing children as a social group draws attention to the ways this group is placed and perceived in the structures of societies. Children as a social group need to be understood in relation to other social groups. Secondly, understanding children as social agents and as co-constructors of their social worlds is fundamental to studying their experiences and ways of dealing with health and wellbeing in everyday life. Thirdly, in recent years, there has been a turn towards seeing children as beings. The chapter discusses the child health issues and concerns in contemporary society. Children are diagnosed with an increasing range of conditions and are subject to more and more elaborate child health and welfare interventions, reflecting a medical perspective on the changing panorama of illness and health risks in the 21st century.

Health-related quality of life in Huntington’s Disease patients: a comparison of proxy assessment and patient self-rating using the disease-specific Huntington’s Disease health-related quality of life questionnaire (HDQoL)

Huntington’s disease (HD) is a fatal, neurodegenerative disease for which there is no known cure. Proxy evaluation is relevant for HD as its manifestation might limit the ability of persons to report their health-related quality of life (HrQoL). This study explored patient–proxy ratings of HrQoL of persons at different stages of HD, and examined factors that may affect proxy ratings. A total of 105 patient–proxy pairs completed the Huntington’s disease health-related quality of life questionnaire (HDQoL) and other established HrQoL measures (EQ-5D and SF-12v2). Proxy–patient agreement was assessed in terms of absolute level (mean ratings) and intraclass correlation. Proxies’ ratings were at a similar level to patients’ self-ratings on an overall Summary Score and on most of the six Specific Scales of the HDQoL. On the Specific Hopes and Worries Scale, proxies on average rated HrQoL as better than patients’ self-ratings, while on both the Specific Cognitive Scale and Specific Physical and Functional Scale proxies tended to rate HrQoL more poorly than patients themselves. The patient’s disease stage and mental wellbeing (SF-12 Mental Component scale) were the two factors that primarily affected proxy assessment. Proxy scores were strongly correlated with patients’ self-ratings of HrQoL, on the Summary Scale and all Specific Scales. The patient–proxy correlation was lower for patients at moderate stages of HD compared to patients at early and advanced stages. The proxy report version of the HDQoL is a useful complementary tool to self-assessment, and a promising alternative when individual patients with advanced HD are unable to self-report.

An exploration of the needs and goals of the health professional and patient in a medical consultation

This Study is the first phase of a three-phase study continuing over three years. Twent)' health professionals from different disciplinary backgrounds (medical doctors, nurses, allied health professionals) and 20 patients across a range of medical condidons, education, gender, and socio-economic backgrounds, pardcipated in one-on-one semi-structured interviews. Participants described their experiences and percepdons of both effecdve and sadsfying medical consultations and dissadsf)'ing and ineffecdve ones. They also discussed their individual goals and needs in the consultation process. Results indicated that while there were some similarides in consultation goals and needs between health professionals, there were also clear differences across the different discipUnes. In addition, there were clear differences in goals and needs across the twenty padents. These findings are discussed within the framework of communicadon accommodadon theor}' (CAT) and the linguisdc model of padent pardcipadon (LMOPP) and focus on understanding the different dynamics that underpin varying health professional and padent interacdons.

Connecting a sociology of childhood perspective with the study of child health, illness and wellbeing:introduction

In the last decades we have seen a growing interest in research into children's own experiences and understandings of health and illness. This development, we would argue, is much stimulated by the sociology of childhood which has drawn our attention to how children as a social group are placed and perceived within the structure of society, and within inter-generational relations, as well as how children are social agents and co-constructors of their social world. Drawing on this tradition, we here address some cross-cutting themes that we think are important to further the study of child health: situating children within health policy, drawing attention to practices around children's health and well-being and a focus on children as health actors. The paper contributes to a critical analysis of child health policy and notions of child health and normality, pointing to theoretical and empirical research potential for the sociology of children's health and illness.

An exploration of treatment burden and patient capacity in people with stroke

Background and aims: Advances in modern medicine have led to improved outcomes after stroke, yet an increased treatment burden has been placed on patients. Treatment burden is the workload of health care for people with chronic illness and the impact that this has on functioning and well-being. Those with comorbidities are likely to be particularly burdened. Excessive treatment burden can negatively affect outcomes. Individuals are likely to differ in their ability to manage health problems and follow treatments, defined as patient capacity. The aim of this thesis was to explore the experience of treatment burden for people who have had a stroke and the factors that influence patient capacity. Methods: There were four phases of research. 1) A systematic review of the qualitative literature that explored the experience of treatment burden for those with stroke. Data were analysed using framework synthesis, underpinned by Normalisation Process Theory (NPT). 2) A cross-sectional study of 1,424,378 participants >18 years, demographically representative of the Scottish population. Binary logistic regression was used to analyse the relationship between stroke and the presence of comorbidities and prescribed medications. 3) Interviews with twenty-nine individuals with stroke, fifteen analysed by framework analysis underpinned by NPT and fourteen by thematic analysis. The experience of treatment burden was explored in depth along with factors that influence patient capacity. 4) Integration of findings in order to create a conceptual model of treatment burden and patient capacity in stroke. Results: Phase 1) A taxonomy of treatment burden in stroke was created. The following broad areas of treatment burden were identified: making sense of stroke management and planning care; interacting with others including health professionals, family and other stroke patients; enacting management strategies; and reflecting on management. Phase 2) 35,690 people (2.5%) had a diagnosis of stroke and of the 39 co-morbidities examined, 35 were significantly more common in those with stroke. The proportion of those with stroke that had >1 additional morbidities present (94.2%) was almost twice that of controls (48%) (odds ratio (OR) adjusted for age, gender and socioeconomic deprivation; 95% confidence interval: 5.18; 4.95-5.43) and 34.5% had 4-6 comorbidities compared to 7.2% of controls (8.59; 8.17-9.04). In the stroke group, 12.6% of people had a record of >11 repeat prescriptions compared to only 1.5% of the control group (OR adjusted for age, gender, deprivation and morbidity count: 15.84; 14.86-16.88). Phase 3) The taxonomy of treatment burden from Phase 1 was verified and expanded. Additionally, treatment burdens were identified as arising from either: the workload of healthcare; or the endurance of care deficiencies. A taxonomy of patient capacity was created. Six factors were identified that influence patient capacity: personal attributes and skills; physical and cognitive abilities; support network; financial status; life workload, and environment. A conceptual model of treatment burden was created. Healthcare workload and the presence of care deficiencies can influence and be influenced by patient capacity. The quality and configuration of health and social care services influences healthcare workload, care deficiencies and patient capacity. Conclusions: This thesis provides important insights into the considerable treatment burden experienced by people who have had a stroke and the factors that affect their capacity to manage health. Multimorbidity and polypharmacy are common in those with stroke and levels of these are high. Findings have important implications for the design of clinical guidelines and healthcare delivery, for example co-ordination of care should be improved, shared decision-making enhanced, and patients better supported following discharge from hospital.

Nurses’ role in caring for people with a comorbidity of mental illness and intellectual disability : A literature review

This article examines literature on the role of the nurse caring for people with a dual disability (DD) of intellectual disability and mental illness. A search of the literature between 2000 and 2010 resulted in a total of 21 articles that met the inclusion criteria. Seven key categories of the role of the nurse were identified: (i) advocacy/health promotion (including working with family); (ii) assessment/case management; (iii) behavioural interventions; (iv) communication; (v) leadership and the nurse’s role within the multidisciplinary team; (vi) functions regarding medication administration; and (vii) safety/risk management. There is a paucity of research about the role of nurses working with people with DD, although a number of opinion-based articles exist. This article identifies a need for the role of the nurse working in DD to be more clearly articulated and for the development of evidence to guide best practice.

The effects of parental illness and other ill family members on youth caregiving experiences

Informed by a model of family role-redistribution derived from the Family Ecology Framework (Pedersen & Revenson, 2005), this study examined differences in two proposed psychological components of role-redistribution (youth caregiving experiences and responsibilities) between youth of a parent with illness and their peers from ‘healthy’ families controlling for the effects of whether a parent is ill or some other family member, illness type, and demographics. Based on self-report questionnaire data, four groups of Australian children were derived from a community sample of 2474youth (‘healthy’ family, n=1768; parental illness, n=336; other family member illness, n=254; both parental and other family member illness, n=116). The presence of any family member with a serious illness is associated with an intensification of youth caregiving experiences relative to peers from healthy families. This risk is elevated if the ill family member is a parent, if more illnesses are present, and by certain youth and family demographics, and especially by higher caregiving responsibilities. The presence of a family member, particularly a parent, with a serious medical condition has pervasive increased effects on youth caregiving compared to healthy families, and these effects are not fully accounted for by illness type, demographics or caregiving responsibilities.

The effects of parental illness and other ill family members on the adjustment of children

Background This study addresses limitations of prior research that have used group comparison designs to test the effects of parental illness on youth. Purpose This study examined differences in adjustment between children of a parent with illness and peers from ‘healthy’ families controlling for the effects of whether a parent or non-parent family member is ill, illness type, demographics and caregiving. Methods Based on questionnaire data, groups were derived from a community sample of 2,474 youth (‘healthy’ family, n = 1768; parental illness, n = 336; other family member illness, n = 254; both parental and other family illness, n = 116). Results The presence of any family member with an illness is associated with greater risk of mental health difficulties for youth relative to peers from healthy families. This risk is elevated if the ill family member is a parent and has mental illness or substance misuse. Conclusions Serious health problems within a household adversely impact youth adjustment.

The SPHERE Study: Secondary prevention of heart disease in general practice: protocol of a randomised controlled trial of tailored practice and patient care plans with parallel qualitative, economic and policy analyses. [ISRCTN24081411]

Background: The aim of the SPHERE study is to design, implement and evaluate tailored practice and personal care plans to improve the process of care and objective clinical outcomes for patients with established coronary heart disease (CHD) in general practice across two different health systems on the island of Ireland.CHD is a common cause of death and a significant cause of morbidity in Ireland. Secondary prevention has been recommended as a key strategy for reducing levels of CHD mortality and general practice has been highlighted as an ideal setting for secondary prevention initiatives. Current indications suggest that there is considerable room for improvement in the provision of secondary prevention for patients with established heart disease on the island of Ireland. The review literature recommends structured programmes with continued support and follow-up of patients; the provision of training, tailored to practice needs of access to evidence of effectiveness of secondary prevention; structured recall programmes that also take account of individual practice needs; and patient-centred consultations accompanied by attention to disease management guidelines.

Methods: SPHERE is a cluster randomised controlled trial, with practice-level randomisation to intervention and control groups, recruiting 960 patients from 48 practices in three study centres (Belfast, Dublin and Galway). Primary outcomes are blood pressure, total cholesterol, physical and mental health status (SF-12) and hospital re-admissions. The intervention takes place over two years and data is collected at baseline, one-year and two-year follow-up. Data is obtained from medical charts, consultations with practitioners, and patient postal questionnaires. The SPHERE intervention involves the implementation of a structured systematic programme of care for patients with CHD attending general practice. It is a multi-faceted intervention that has been developed to respond to barriers and solutions to optimal secondary prevention identified in preliminary qualitative research with practitioners and patients. General practitioners and practice nurses attend training sessions in facilitating behaviour change and medication prescribing guidelines for secondary prevention of CHD. Patients are invited to attend regular four-monthly consultations over two years, during which targets and goals for secondary prevention are set and reviewed. The analysis will be strengthened by economic, policy and qualitative components.

Effect of tailored practice and patient care plans on secondary prevention of heart disease in general practice: cluster randomised controlled trial

Objective: To test the effectiveness of a complex intervention designed, within a theoretical framework, to improve outcomes for patients with coronary heart disease. Design: Cluster randomised controlled multicentre trial. Setting: General practices in Northern Ireland and the Republic of Ireland, regions with different healthcare systems. Participants: 903 patients with established coronary heart disease registered with one of 48 practices. Intervention: Tailored care plans for practices (practice based training in prescribing and behaviour change, administrative support, quarterly newsletter), and tailored care plans for patients (motivational interviewing, goal identification, and target setting for lifestyle change) with reviews every four months at the practices. Control practices provided usual care. Main outcome measures: The proportion of patients at 18 month follow-up above target levels for blood pressure and total cholesterol concentration, and those admitted to hospital, and changes in physical and mental health status (SF-12). Results: At baseline the numbers (proportions) of patients above the recommended limits were: systolic blood pressure greater than 140 mm Hg (305/899; 33.9%, 95% confidence interval 30.8% to 33.9%), diastolic blood pressure greater than 90 mm Hg (111/901; 12.3%, 10.2% to 14.5%), and total cholesterol concentration greater than 5 mmol/l (188/860; 20.8%, 19.1% to 24.6%). At the 18 month follow-up there were no significant differences between intervention and control groups in the numbers (proportions) of patients above the recommended limits: systolic blood pressure, intervention 98/360 (27.2%) v control, 133/405 (32.8%), odds ratio 1.51 (95% confidence interval 0.99 to 2.30; P=0.06); diastolic blood pressure, intervention 32/360 (8.9%) v control, 40/405 (9.9%), 1.40 (0.75 to 2.64; P=0.29); and total cholesterol concentration, intervention 52/342 (15.2%) v control, 64/391 (16.4%), 1.13 (0.63 to 2.03; P=0.65). The number of patients admitted to hospital over the 18 month study period significantly decreased in the intervention group compared with the control group: 107/415 (25.8%) v 148/435 (34.0%), 1.56 (1.53 to 2.60; P=0.03). Conclusions: Admissions to hospital were significantly reduced after an intensive 18 month intervention to improve outcomes for patients with coronary heart disease, but no other clinical benefits were shown, possibly because of a ceiling effect related to improved management of the disease. Trial registration: Current Controlled Trials ISRCTN24081411.

The pain and pleasure of being what one is: Viewpoints of health professionals and patients about being overweight/obese

The objective of this article is to discuss the meanings that health professionals and patients in treatment attribute to obesity. The research consisted of a qualitative survey in health, based on in-depth interviews with patients and professionals at an out-patient clinic at the University Hospital in Barcelona, Spain. Here, we discuss the concept of obesity, the meanings of diagnoses, the singularities involved in managing treatment, and the process of becoming ill, all in the light of the anthropology of health that has a sociocultural orientation. Obesity is usually seen by the professionals as a risk-factor disease. For patients, the incorporation of this rationality is procedural and is mixed in with other meanings attributed to being overweight/obese that have been gradually developed throughout life. A patient's autonomy in choosing to be fat, or obese, and to adhere to treatment, is defined as a process that requires support in order to come to joint proposals in caring for these problems.

Major differences in organization and availability of health care and medicines for HIV/TB coinfected patients across Europe

OBJECTIVES The aim of the study was to investigate the organization and delivery of HIV and tuberculosis (TB) health care and to analyse potential differences between treatment centres in Eastern (EE) and Western Europe (WE). METHODS Thirty-eight European HIV and TB treatment centres participating in the TB:HIV study within EuroCoord completed a survey on health care management for coinfected patients in 2013 (EE: 17 respondents; WE:21; 76% of all TB:HIV centres). Descriptive statistics were obtained for regional comparisons. The reported data on health care strategies were compared with actual clinical practice at patient level via data derived from the TB:HIV study. RESULTS Respondent centres in EE comprised: Belarus (n = 3), Estonia (1), Georgia (1), Latvia (1), Lithuania (1), Poland (4), Romania (1), the Russian Federation (4) and Ukraine (1); those in WE comprised: Belgium (1), Denmark (1), France (1), Italy (7), Spain (2), Switzerland (1) and UK (8). Compared with WE, treatment of HIV and TB in EE are less often located at the same site (47% in EE versus 100% in WE; P < 0.001) and less often provided by the same doctors (41% versus 90%, respectively; P = 0.002), whereas regular screening of HIV-infected patients for TB (80% versus 40%, respectively; P = 0.037) and directly observed treatment (88% versus 20%, respectively; P < 0.001) were more common in EE. The reported availability of rifabutin and second- and third-line anti-TB drugs was lower, and opioid substitution therapy (OST) was available at fewer centres in EE compared with WE (53% versus 100%, respectively; P < 0.001). CONCLUSIONS Major differences exist between EE and WE in relation to the organization and delivery of health care for HIV/TB-coinfected patients and the availability of anti-TB drugs and OST. Significant discrepancies between reported and actual clinical practices were found in EE.

There is nothing that 'identifies me to that place' : Aboriginal Women's perceptions of health spaces and places

There is a growing body of literature within social and cultural geography that explores notions of place, space, culture, race and identity. The more recent works suggest that places are experienced and understood in multiple ways and are embedded within an array of politics. Memmott and Long, who have undertaken place-based research with Australian Indigenous people, present the theoretical position that ‘place is made and takes on meaning through an interaction process involving mutual accommodation between people and the environment’. They outline that places and their cultural meanings are generated through one or a combination of three types of people–environment interactions. These include: a place that is created by altering the physical characteristics of a piece of environment and which might encompass a feature or features which are natural or made; a place that is created totally through behaviour that is carried out within a specific area, therefore that specific behaviour becomes connected to that specific place; and a place created by people moving or being moved from one environment to another and establishing a new place where boundaries are created and activities carried out. All these ideas of places are challenged and confirmed by what Indigenous women have said about their particular use of, and relationship with, space within several health services in Rockhampton, Central Queensland. As my title suggests, Indigenous women do not see themselves as ‘neutral’ or ‘non-racialised’ citizens who enter and ‘use’ a supposedly neutral health service. Instead, Aboriginal women demonstrate they are active recognisers of places that would identify them within the particular health place. That is, they as Aboriginal women didn’t just ‘make’ place, the places and spaces ‘make’ them. The health services were identified as sites within which spatial relations could begin to grow with recognition of themselves as Aboriginal women in place, or instead create a sense of marginality in the failure of the spaces to identify them. The women’s voices within this paper are drawn from interviews undertaken with twenty Aboriginal women in Rockhampton, Central Queensland, Australia, who participated in a research project exploring ‘how the relationship between health services and Aboriginal women can be more empowering from the viewpoints of Aboriginal women’. The assumption underpinning this study was that empowering and re-empowering practices for Aboriginal women can lead to improved health outcomes. Throughout the interviews women shared some of their lived realities including some of their thoughts on identity, the body, employment in the health sector, service delivery and their notions of health service spaces and places. Their thoughts on health service spaces and places provide an understanding of the lived reality for Aboriginal women and are explored and incorporated within this paper.