Análise do Programa Melhor em Casa : um olhar sobre a atenção domiciliar no âmbito do Sistema Único de Saúde (SUS)

Mestrado (dissertação)—Universidade de Brasília, Faculdade de Ciências da Saúde, Programa de Pós-Graduação em Saúde Coletiva, 2016.

The usefulness of the distress thermometer in the management of cancer patients: a mixed methods approach

Objective: The aim of this study was to investigate the usefulness of the National Comprehensive Cancer Network (NCCN) Distress Thermometer and Problem List in identifying distress levels and psychosocial concerns over the cancer trajectory using a mixed-methods approach.
Method: Eighty-five cancer patients from the Barwon South West region of Victoria participated in this study by completing the NCCN Distress Thermometer and Problem List over three time periods. Three case studies were also conducted to add a qualitative dimension.
Results: Emotional concerns decreased as psychological distress levels decreased and a high level of physical concerns were consistent with a high level of psychological distress. Cancer patients’ narrative accounts also supported
the usefulness of the NCCN Distress Thermometer and Problem List as a screening tool.
Conclusions: Findings are discussed with reference to implications for psychological/emotional support of cancer patients, the provision of supportive care services and directions for future research.

Small-scale rural pilot programs in chronic illness management - what next?

In recent years, rural SA has been the recipient of significant funding to support a range of new primary health care initiatives. Much of this funding, additional to normal recurrent budgets in our health system, has facilitated effective change and development through demonstration and research projects across the state. The resultant work involves programs such as: ? coordinated care trials (COAG) ? more allied health services (MAHS) ? Commonwealth regional health service initiatives (CRHS) ? quality use of medicines (QUM) ? community packages for aged care services ? Indigenous chronic disease self-management pilot programs (CDSM) ? chronic disease self-management (CDSM) programs - Sharing Health Care SA ? chronic disease self-management (CDSM) programs in Indigenous communities. In addition to the resources listed above, funding was also provided by the Commonwealth to establish the South Australian Centre for Rural and Remote Health (SACRRH) and develop the University Department of Rural Health in Whyalla. While this new funding has led to substantial developmental work in chronic illness management in particular, one needs to ask whether the time might not be right now for these hitherto small-scale change initiatives to be transformed into ongoing mainstream programs, informed and guided by research outcomes to date. Is it time to move beyond tentative chronic illness programs and into mainstream reform? We have shown that there is much to be gained, both for patients and for the system, from improved coordination of primary care services and initiatives such as self-management programs for patients with chronic conditions. Better management leads to improved patient health outcomes and can reduce demand for unplanned hospital and emergency services. Many admissions to rural hospitals requiring expensive services, in terms of infrastructure and staffing, could be either prevented, or patients could be managed more effectively in the community as part of a wider primary health care program.

Maximising baby boomer engagement in volunteering: a case study from enquiry to implementation

A community aged care service, with the assistance of other stakeholders, initiated a qualitative practice-oriented research project to interview baby boomers about their plans for retirement and their interests in volunteering. The project looks to reshape baby boomer volunteering for our aged care services. Our findings highlight that baby boomers are looking for meaningful, diverse and flexible volunteer opportunities. This will require organisations to adapt their volunteer programs and develop the required infrastructure (improved advertising, assessment and volunteer support approaches) to cater for the volunteering needs of baby boomers. This paper highlights the process, findings, initial efforts and future challenges to engaging baby boomers in volunteer work. It is recognised that further research is required in what is not a homogenous group.

La relation d’accompagnement entre des jeunes pères et des infirmières dans les SIPPE : une analyse sensible au genre

La pratique infirmière en contexte de parentalité précoce et de vulnérabilité sociale auprès de mères âgées de moins de 20 ans et leurs bébés comporte des défis pour les infirmières qui éprouvent des difficultés à établir des liens avec les jeunes pères. Leur pratique d’accompagnement est orientée principalement vers la dyade mère-enfant, tandis qu’elles se sentent peu outillées pour accompagner les jeunes pères dans leur rôle paternel. Des études récentes suggèrent de considérer le genre dans la compréhension de l’espace relationnel entre des pères et des infirmières, notamment dans des services de première ligne. Cette étude a pour but de décrire, selon une perspective sensible au genre, les représentations identitaires qui configurent la relation d’accompagnement entre des jeunes pères et des infirmières dans le cadre des Services intégrés en périnatalité et pour la petite enfance (SIPPE). Partant d’une recherche évaluative multicentrique du Programme de soutien aux jeunes parents (PSJP) des SIPPE, cette recherche qualitative interprétative présente une analyse secondaire de 34 entretiens semi-dirigés complétés auprès de jeunes pères et d’infirmières. L’analyse croisée du discours des participants et la modélisation systémique ont permis de représenter des conceptions identitaires et des dynamiques contextuelles qui composent la relation d’accompagnement entre des jeunes pères et des infirmières dans le PSJP/SIPPE. Cette relation prend principalement forme autour de l’échange d’informations axées sur les soins de l’enfant. De plus, elle est marquée par des représentations différenciées de l’identité parentale du jeune père (père présent et soignant vs père peu compétent), de son engagement dans les responsabilités afférentes à son rôle et par une dynamique de vigie-surveillance exercée par les infirmières. Cette relation peut se transformer à travers le temps, où le père conçu responsable et protecteur devient un allié pour l’infirmière, tout en demeurant sous surveillance. Parmi les contributions de cette recherche, nous signalons l’importance du soutien émotionnel en plus du soutien informationnel pour les pères qu’il importe de considérer à part entière dans l’accompagnement auprès de familles vivant en situation de vulnérabilité sociale. Enfin, cette recherche souligne la pertinence d’une perspective sensible au genre pour concevoir l’espace relationnel du soin et développer la pratique infirmière d’accompagnement.

La relation d’accompagnement entre des jeunes pères et des infirmières dans les SIPPE : une analyse sensible au genre

La pratique infirmière en contexte de parentalité précoce et de vulnérabilité sociale auprès de mères âgées de moins de 20 ans et leurs bébés comporte des défis pour les infirmières qui éprouvent des difficultés à établir des liens avec les jeunes pères. Leur pratique d’accompagnement est orientée principalement vers la dyade mère-enfant, tandis qu’elles se sentent peu outillées pour accompagner les jeunes pères dans leur rôle paternel. Des études récentes suggèrent de considérer le genre dans la compréhension de l’espace relationnel entre des pères et des infirmières, notamment dans des services de première ligne. Cette étude a pour but de décrire, selon une perspective sensible au genre, les représentations identitaires qui configurent la relation d’accompagnement entre des jeunes pères et des infirmières dans le cadre des Services intégrés en périnatalité et pour la petite enfance (SIPPE). Partant d’une recherche évaluative multicentrique du Programme de soutien aux jeunes parents (PSJP) des SIPPE, cette recherche qualitative interprétative présente une analyse secondaire de 34 entretiens semi-dirigés complétés auprès de jeunes pères et d’infirmières. L’analyse croisée du discours des participants et la modélisation systémique ont permis de représenter des conceptions identitaires et des dynamiques contextuelles qui composent la relation d’accompagnement entre des jeunes pères et des infirmières dans le PSJP/SIPPE. Cette relation prend principalement forme autour de l’échange d’informations axées sur les soins de l’enfant. De plus, elle est marquée par des représentations différenciées de l’identité parentale du jeune père (père présent et soignant vs père peu compétent), de son engagement dans les responsabilités afférentes à son rôle et par une dynamique de vigie-surveillance exercée par les infirmières. Cette relation peut se transformer à travers le temps, où le père conçu responsable et protecteur devient un allié pour l’infirmière, tout en demeurant sous surveillance. Parmi les contributions de cette recherche, nous signalons l’importance du soutien émotionnel en plus du soutien informationnel pour les pères qu’il importe de considérer à part entière dans l’accompagnement auprès de familles vivant en situation de vulnérabilité sociale. Enfin, cette recherche souligne la pertinence d’une perspective sensible au genre pour concevoir l’espace relationnel du soin et développer la pratique infirmière d’accompagnement.

Charitable incentives for blood donation are promising, but require careful consideration

In outlining his proposal for a charitable incentive schemefor blood donors, Sass (2013) highlights the ongoing challengeof translating widespread public support for blooddonation into actual donors. Sass rightly points out that a reliableand effective blood supply depends on regular donations,rather than sporadic surges in response to exceptionalevents like September 11. He argues that prospective donorsmight be more effectively motivated to donate if each donationis rewarded or recognized with a financial contributionto public health care services or medical research. Sass anticipatessuch “health-related charitable incentives” wouldencourage prosocial behavior by enhancing the beneficialimpact of blood donation. The increased consequentialistvalue of each blood donation would strengthen preexistingprosocial motivations, and would augment the signalingvalue of donation as an altruistic activity. Unfortunately,Sass’s account of the donor–societal relationship is incomplete,due to his reliance on the traditional conception ofdonation as an act of unilateral altruism. He neglects to considerthe potential influence of reciprocity and solidarity inmotivating prosocial behavior and donation in particular(Sykora 2009), and the implications of these elements for ´his proposal. In this commentary, I outline a stronger argumentfor his charitable incentive proposal and discuss someof the potential concerns the proposal may raise.

Data processing of physiological sensor data and alarm determination utilising activity recognition

Current physiological sensors are passive and transmit sensed data to Monitoring centre (MC) through wireless body area network (WBAN) without processing data intelligently. We propose a solution to discern data requestors for prioritising and inferring data to reduce transactions and conserve battery power, which is important requirements of mobile health (mHealth). However, there is a problem for alarm determination without knowing the activity of the user. For example, 170 beats per minute of heart rate can be normal during exercising, however an alarm should be raised if this figure has been sensed during sleep. To solve this problem, we suggest utilising the existing activity recognition (AR) applications. Most of health related wearable devices include accelerometers along with physiological sensors. This paper presents a novel approach and solution to utilise physiological data with AR so that they can provide not only improved and efficient services such as alarm determination but also provide richer health information which may provide content for new markets as well as additional application services such as converged mobile health with aged care services. This has been verified by experimented tests using vital signs such as heart pulse rate, respiration rate and body temperature with a demonstrated outcome of AR accelerometer sensors integrated with an Android app.

PPM-HDA: privacy-preserving and multifunctional health data aggregation with fault tolerance

Wireless body area networks (WBANs), as a promising health-care system, can provide tremendous benefits for timely and continuous patient care and remote health monitoring. Owing to the restriction of communication, computation and power in WBANs, cloud-assisted WBANs, which offer more reliable, intelligent, and timely health-care services for mobile users and patients, are receiving increasing attention. However, how to aggregate the health data multifunctionally and efficiently is still an open issue to the cloud server (CS). In this paper, we propose a privacy-preserving and multifunctional health data aggregation (PPM-HDA) mechanism with fault tolerance for cloud-assisted WBANs. With PPM-HDA, the CS can compute multiple statistical functions of users' health data in a privacy-preserving way to offer various services. In particular, we first propose a multifunctional health data additive aggregation scheme (MHDA⁺) to support additive aggregate functions, such as average and variance. Then, we put forward MHDA^⊕ as an extension of MHDA⁺ to support nonadditive aggregations, such as min/max, median, percentile, and histogram. The PPM-HDA can resist differential attacks, which most existing data aggregation schemes suffer from. The security analysis shows that the PPM-HDA can protect users' privacy against many threats. Performance evaluations illustrate that the computational overhead of MHDA⁺ is significantly reduced with the assistance of CSs. Our MHDA^⊕ scheme is more efficient than previously reported min/max aggregation schemes in terms of communication overhead when the applications require large plaintext space and highly accurate data.

'The horse has bolted I suspect': A qualitative study of clinicians' attitudes and perceptions regarding palliative rehabilitation.

BACKGROUND: Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied. AIM: To explore palliative medicine physicians' attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units. DESIGN: Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results. PARTICIPANTS: Australian palliative medicine physicians working in inpatient palliative care units. RESULTS: In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years' experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians' attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation. CONCLUSION: A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.

Iowa’s Title V Maternal and Child Health (MCH) Annual Report, 2012

Title V of the Social Security Act is the longest-standing public health legislation in American history. Enacted in 1935, Title V is a federal-state partnership that promotes and improves maternal and child health (MCH). According to each state’s unique needs, Title V supports a spectrum of services, from infrastructure building services like quality assurance and policy development, to gap-filling direct health care services. Title V resources are directed towards MCH priority populations: pregnant women, mothers, infants, women of reproductive years, children and adolescents and children and youth with special health care needs.

Vulnerable Rural Counties: The Changing Rural Landscape, 2000–2010

Understanding the demography of rural America is vital to understanding what programs, interventions and policy initiatives are needed to improve health care access, delivery and outcomes. Overall findings suggest that rural America experienced the recession that ended the 2000–2010 decade more severely than did urban America. Loss of income, declining population and reduced health care resources marked the period for most rural counties. Rural counties will need continued monitoring in the present decade to ascertain whether these adverse trends continue and to identify any policy approaches that can serve to ameliorate losses in health care services.

Implantation d’une innovation au sein d’une région rurale éloignée au Québec : le rôle d’infirmière praticienne spécialisée en soins de première ligne- une étude de cas multiples

Introduction : La situation de l’accès, de la continuité et de la coordination des services de santé au Canada et au Québec est des plus préoccupantes. Pour contribuer à résoudre ces problématiques, l’élargissement des champs de pratique professionnels a été proposé. Lorsqu’il est question d’élargir le rôle des infirmières, la pratique infirmière avancée (PIA) est fréquemment abordée. Au Québec, ce n’est qu’en 2006 qu’un rôle associé à la PIA en première ligne a pu officiellement être mis en place, celui d’infirmière praticienne spécialisée en soins de première ligne (IPSPL) (Durand, Allard, & Ménard, 2006). L’implantation du rôle d’IPSPL est récente et peut être conçue comme une innovation. Les difficultés liées à l’implantation des rôles de PIA font l’objet d’un consensus. Pour pallier à ces difficultés, il est proposé d’approfondir la compréhension de la façon dont les rôles de PIA sont implantés, et ce, en considérant les contextes. Encore peu de recherches s’intéressent au processus d’implantation du rôle d’IPSPL au Québec, et aucune n’est centrée sur le contexte rural éloigné. But : Cette recherche vise à comprendre le processus d’implantation du rôle d’IPSPL au sein d’une région rurale éloignée du Québec, à travers l’éclairage d’un cadre de référence intégrant les théories de la diffusion de l’innovation et des transitions. Méthode : Cette étude de trois cas se situe dans un paradigme pragmatique, avec des visées descriptive et explicative. Des stratégies de collecte de données mixtes ont été utilisées auprès de personnes provenant du contexte québécois, de la région ciblée et des cas (IPSP, médecins partenaires, DSI, DSP, gestionnaires, personnes soignées et leur famille). Résultats : L’implantation est un processus multidimensionnel, multifactoriel et évolutif. Le contexte, le déroulement, la compréhension, les acteurs et le temps sont des parties intégrantes de l’implantation et sont étroitement inter-reliés. Le déroulement de l’implantation et des transitions se produit simultanément. Discussion : Cette recherche a permis de mettre en lumière la raison pour laquelle le processus d’implantation du rôle d’IPSPL doit être considéré comme un processus complexe. Cette thèse contribue à éclairer la recherche axée sur l’efficacité en permettant de mieux comprendre les différentes composantes de l’implantation. Mots-clés : implantation, rôle, infirmière praticienne, première ligne, rural, éloigné, innovation, transition.

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.

Impacto de la resiliencia en pacientes con Artritis Reumatoide

Introducción: La artritis reumatoide (AR) es una enfermedad autoinmune-inflamatoria, que compromete las articulaciones diartrodiales. Tiene una importante repercusión sistémica que incluye la depresión; por lo tanto, tiene un severo impacto sobre la calidad de vida. Es posible que mecanismos de defensa, tales como la resiliencia, puedan amortiguar dicho impacto. Metodología: estudio de corte transversal, multicéntrico (análisis inicial dentro del grupo AR, con muestra no probabilística de 66 pacientes, posterior selección aleatoria simple de 16 pacientes de la muestra inicial y selección de 16 individuos sanos pareados). Posteriormente, se comparó la resiliencia entre sujetos con AR y sujetos sanos, mediante las escalas RS y CD-RISC25. Adicionalmente, se aplicaron las escalas EEAE, EADZ, SF-36 y PANAS. Los datos fueron evaluados mediante el coeficiente de correlación de Spearman, las pruebas U Mann-Whitney, Kruskall-Wallis, T de Student y análisis de varianza. Resultados: se encontraron diferencias significativas en las estrategias de afrontamiento no espirituales en grupos de resiliencia baja, media y alta; diferencias en las medianas de resiliencia en los grupos de depresión por EAZD en los pacientes. No se encontraron resultados significativos en las variables clínicas de la AR ni en la comparación con sujetos sanos. Conclusiones: el uso de estrategias de afrontamiento no espirituales y la ausencia de depresión, se asoció a mayores niveles de resiliencia en los pacientes con AR, por lo cual, los componentes emocionales y cognitivos se asocian a la resiliencia.