Description des profils des hauts consommateurs d’un département d’urgence et mise en à l’essai d’une intervention infirmière pour optimiser la trajectoire de soins

Rapport de stage présenté à la Faculté des sciences infirmières en vue de l'obtention du grade de Maître ès sciences (M.Sc.) en sciences infirmières option expertise-conseil en soins infirmiers

«Grandir comme aidant» : pour mieux comprendre la réalité des adolescents qui sont des aidants naturels auprès d'un parent dépendant.

La présente recherche s’intéresse aux adolescents qui sont des aidants naturels auprès d’un parent aux prises avec une maladie chronique dans un contexte où, d’une part, de plus en plus de soins doivent désormais être assumés par les personnes atteintes elles-mêmes et par leurs familles (Guberman et coll., 2005) et, d’autre part, les services destinés aux aidants naturels ont encore de la difficulté à concevoir les enfants et les adolescents comme étant des aidants (Charles, Stainton et Marshall, 2012). Les jeunes aidants adoptent des tâches et des rôles qui ne sont pas toujours adaptés à leur âge (Earley et Cushway, 2002), ce qui peut compromettre leur développement psycho-social (Sieh et coll., 2010 ; Davey et coll., 2005 ; Pedersen et Revenson, 2005). En parlant des jeunes aidants, il est important de considérer le caregiving sur un continuum selon lequel tous les jeunes sont impliqués, d’une façon ou d’une autre, dans les aspects de la prise en charge d’un parent malade, mais qu’une proportion plus petite adopte un rôle de jeune aidant, ce qui signifie que leur implication est exagérée, que le temps consacré à l’aide ainsi que la nature de celle-ci ne correspondent pas à leur âge ni à leur stade de développement, et qu’il y a des restrictions importantes ayant des impacts négatifs sur leur vie (Becker, 2007). Notre recherche part ainsi de l’interrogation sur la façon dont cette réalité est vécue par les adolescents et dont elle est perçue et interprétée par les intervenants de différents milieux de pratique dans le contexte québécois. Cette recherche s’appuie sur le cadre théorique de la reconnaissance tel que proposé par Honneth. En effet, en nous appuyant sur la littérature disponible, on peut présumer que l’attention portée aux jeunes aidants est un enjeu central de leur réalité. En conséquence, il est de notre avis qu’il faut mieux comprendre les enjeux de cette reconnaissance dont la plupart des recherches parlent, mais qui restent peu étudiés en lien avec les jeunes aidants. Ce cadre conceptuel servira de porte d’entrée pour analyser quatre entrevues semi-dirigées avec des adolescents âgés de 15 à 19 ans, ainsi que sept entrevues semi-dirigées avec des intervenants de divers milieux de pratique. Les résultats de cette recherche suggèrent la présence de trois dynamiques de reconnaissance décrivant des enjeux différents entourant la réalité des jeunes aidants. Celles-ci mettent en évidence que les conséquences auxquelles les jeunes aidants peuvent être confrontés proviennent moins de leur rôle d’aidant que de la dimension relationnelle en ce qui concerne leur réalité. En outre, au croisement des regards entre les adolescents et les intervenants, un point de divergence se dégage et semble faire obstacle à notre manière de considérer l’aide qui devrait être apportée en ce qui concerne ce phénomène. Il apparaît que, pour les intervenants, l’amélioration de la situation des jeunes aidants passe, entre autres, par le soutien qui devrait être apporté aux parents, tandis que les adolescents mettent un accent particulier sur la manière dont leur contribution est non seulement valorisée dans la sphère familiale, mais également soutenue par les intervenants entourant leur famille.

La collaboration interprofessionnelle au sein de communautés de pratique œuvrant auprès de patients atteints de maladies chroniques : synthèse des expériences rapportées dans la littérature

Le système de santé est aujourd’hui marqué d’une complexité attribuable aux maladies chroniques, dont la hausse anticipée de la prévalence génère l’urgence d’une organisation et d’une approche différentes des services dispensés. Ce réaménagement des soins de santé fait appel à un changement de paradigme basé sur la collaboration interprofessionnelle et l’ouverture à l’incertitude, aptes à favoriser une mise en commun des connaissances. Dans cette perspective, les communautés de pratique (CdeP) semblent un moyen qui favorise le développement de la collaboration interprofessionnelle et le partage des connaissances. Elles apparaissent donc comme une formule qui mérite une investigation, à savoir si elles peuvent favoriser une telle collaboration et faciliter la co-construction de connaissances permettant une pratique évolutive, centrée sur le patient. Notre recherche s’inscrit dans cette optique et s’intéresse aux expériences, rapportées dans la littérature, de collaboration interprofessionnelle au sein de communautés de pratique centrées sur le patient atteint de maladie chronique. Pour ce faire, nous avons d’abord développé un cadre conceptuel visant à identifier les fondements théoriques et conceptuels de la notion de communauté de pratique. Ceci nous a amené à : 1) analyser l’évolution du concept de CdeP dans les principales œuvres de Wenger et de ses collaborateurs; 2) positionner les CdeP eu égard à d’autres formules de travail collaboratif (communauté, communauté d’apprentissage, communauté apprenante, organisation apprenante, communauté épistémique); 3) comparer le concept de collaboration avec d’autres s’en rapprochant (coopération notamment), de même que les notions d’interdisciplinarité et d’interprofessionnalité souvent associées à celle de CdeP; 4) étayer les dimensions cognitive et collaborative inhérentes aux expériences de CdeP; et 5) identifier les avancées et les limites attribuées à la mise en application du concept de CdeP dans le domaine de la santé. La métasynthèse (Beaucher et Jutras, 2007) dans une approche « compréhensive interprétative », s’est imposée comme méthode appropriée à notre intention de mieux saisir les expériences de collaboration interprofessionnelle menées dans le cadre des CdeP dans le domaine de la santé. La métasynthèse nous a ainsi permis d’obtenir une vue d’ensemble de la littérature portant sur les CdeP dans le domaine de la santé et de catégoriser les 194 articles rassemblés, pour ensuite retenir 13 articles traitant d’une réelle expérience de CdeP. Ainsi, dans une perspective contributoire, basée sur notre cadre conceptuel, l’analyse des principaux résultats de la métasynthèse, nous a permis 1) d’identifier les flous conceptuels liés aux expériences de CdeP rapportées, ainsi que 2) de dégager les retombées et les difficultés de leur mise en application dans le domaine de la santé et, enfin, 3) de démontrer la nécessité de mener des recherches visant l’étude du processus de développement de CdeP sur le terrain de la pratique de soins, notamment mais non exclusivement, lorsqu’il s’agit de maladies chroniques.

Calidad de vida en personas con hemofilia: una revisión de la literatura

Introducción: La hemofilia es una enfermedad poco frecuente; no obstante, los avances en los tratamientos de pacientes hemofílicos en las últimas décadas han generado cambios en su calidad de vida. Esto ha motivado el desarrollo de múltiples investigaciones al respecto. Objetivo: Revisar la literatura sobre la calidad de vida en el paciente hemofílico, producida en el periodo 2008-2012. Método: Se consultaron algunas bases de datos científicas utilizando como palabras clave “hemofilia” y “calidad de vida”. Se recopiló la información encontrada y se organizó según los objetivos propuestos en “factores negativos” y “factores protectores” de la calidad de vida a nivel fisiológico, psicosocial y cultural; “instrumentos para la evaluación de la calidad de vida” a nivel específico y general; y antecedentes empíricos de los últimos cinco años en los que se evaluara la calidad de vida o se realizara alguna intervención en la misma. Resultados: En general la información disponible sobre el comportamiento epidemiológico de la hemofilia es limitada. El interés por factores protectores y negativos es principalmente de tipo fisiológico, aunque se encontraron factores de tipo psicosocial y cultural, lo que indica la importancia de profundizar en esta temática. Existen pocos instrumentos especializados para la evaluación de la calidad de vida en hemofílicos. La evidencia empírica se centra en la evaluación. Conclusión: El estudio de la calidad de vida en pacientes hemofílicos amerita ser abordado de manera interdisciplinaria.

Children's caring roles and responsibilities within the family in Africa

In many Sub-Saharan African countries, the care of chronically ill, disabled or elderly relatives is usually regarded as the responsibility of family members, within a broader landscape of often overburdened healthcare systems, the expense of medical fees, very limited access to social protection and policies that emphasise home-based care. Recent studies have demonstrated that children and youth, particularly girls and young women, take on considerable caring roles for chronically ill and elderly relatives in Africa. This article reviews the available research on young people’s caring roles and responsibilities within families affected by chronic illness and disability in Sub-Saharan Africa. I discuss how children’s caring roles challenge global and local constructions of childhood and suggest ways of conceptualising the socio-spatial and embodied dimensions of children’s everyday care work within diverse household forms. I analyse evidence on outcomes of care and children’s resilience in managing their caring responsibilities and examine the complex array of processes that influence whether children take on caring roles within the family. I argue that relational, intergenerational and lifecourse approaches to researching children’s caring responsibilities within the family have considerable potential for future geographical research and could provide further insights into the ways that care is embedded in social relations, cultural norms and structural inequalities operating in different configurations in particular places.

Focus group study of endometriosis: struggle, loss and the medical merry-go-round

Women with endometriosis experience a range of problems for which they may or may not be adequately supported. This paper reports on one aspect of a study conducted at the Epworth Hospital, Melbourne, to identify the information needs of women facing laparoscopy for endometriosis. A number of focus groups were conducted that provided women with a forum for communicating their experiences of endometriosis and laparoscopy. The findings include the experiences of 61 women who described the lack of support, the struggles and the losses involved in living with endometriosis. By far the worst experience that these women described was the encounter with health professionals and the ways in which their symptoms were trivialised and dismissed. There is a great deal for nurses to learn about the experience of living with endometriosis if they are to support women with this chronic illness in their search for well-being.

The education needs of caregivers of stroke survivors in acute and community settings

Stroke is a major cause of chronic illness in Australia, where it is estimated that between 200,000 and 250,000 people live with disabilities due to stroke. Given stroke's effect on survivors and the accompanying burden on caregivers, attention should be given to addressing the needs of caregivers of stroke survivors because they are central to supporting survivors living in the community. Research has shown that the information needs of caregivers are not being met across healthcare settings. Thus, some attention must be given to the development of educational materials that address caregiver needs. In this study we interviewed caregivers to determine their perspectives on support and educational needs at two different stages in the recovery of the stroke survivor: the acute hospital and the community. Despite a high level of uncertainty among caregivers in the acute and community settings, limited information was provided to assist them in their new role. A multifaceted approach would involve the development and implementation of specifically designed educational materials for caregivers, the use of a tool such as a patient-held record to assist in and improve the continuity and communication of care, and the provision of ongoing support from a stroke nurse practitioner who would follow stroke survivors from the acute setting to the community. This approach should be evaluated so that the important issue of addressing caregiver needs is given its due attention.

What about the men? Gender differences in utilisation of arthritis self-management services

As self-management programs for chronic illness increasingly become the domain of primary health care providers, it is important to consider gender inequities in access to these services and gender differences in patterns of use to inform the development and delivery of services. This study explores gender differences in levels and patterns of access to arthritis elf-management services by analyzing data collected from the Telephone Information Service of Arthritis Victoria, Contingency tables were analyzed and odds-ratios calculated to confirm gender differences in levels and patterns of service utilisation. Men were found to be significantly under-represented as users of the service, even after taking into account gender differences in prevalence of arthritis in the population. Women were more likely than men to contact the service on their own behalf. Men were more likely to have a family member or friend contact the services for them. Women showed more interest in learning about their condition while men focused more on symptom management. These gender differences in rates and patterns of services use indicate that services providers of self-management services for conditions such as arthritis need to take into account the interaction between gender and service utilisation.

Will he get back to normal? survival and functional status after intensive care therapy

The study aim was to address healthcare workers’ and patients’ questions about the likely level of recovery at 6 months of patients admitted to an Australian intensive care unit (ICU). Ninety-three consecutive, eligible adults were identified and followed prospectively. Severity of illness on admission was assessed using Acute Physiological and Chronic Health Evaluation (APACHE II), while functional status at 6 months was evaluated using the Sickness Impact Profile (SIP). Cumulative mortality was 25%. Admission severity of illness was associated with survival at 6 months (P≤0.001). Fifty-one (78%) of the 70 survivors were interviewed. Admission severity of illness scores correlated with functional status at 6 months (r=0.34, P=0.01), a finding reported in only one other study. More than half of those interviewed had returned to near pre-admission functional status. Those with poor functional status included high proportions of people with chronic illness and head injury. Overall, physical recovery was more complete than psychosocial recovery. The findings provide useful information for addressing questions relating to physical and psychosocial recovery, appetite, sleep patterns and return to work post discharge.

Being dialysis-dependant: a qualitative perspective

The technology of renal dialysis offers a way in which life can be sustained, so it is not surprising that the complex, diverse and evolving iatrogenic aspects of dialysis-dependency continue to be researched. However, there has been a tendency to take for granted the human process of making sense of the intrusiveness of dialysis. This study was designed to explore the meanings of dialysis-dependency. The study sample was 10 participants: five female, five male; five on peritoneal dialysis, five on haemodialysis; whose ages ranged from 22 to 68 years. Using a narrative methodology the following methods were used: in-depth interviews, narrative and thematic analysis, fieldwork/notes from five renal units, participant validation, and journal reflections. A thematic analysis revealed the continuum themes of Freedom-Restrictions, Being Normal-Being Visible, Control-Acquiesce, Hope-Despair and Support-Abandon. The themes portrayed as continuums serve to remind health care professionals that those with chronic illnesses strive to make sense of what is happening to them. Variations within each of these themes can occur daily, weekly or monthly. Acceptance may never be reached or may be tentative. Some clients will strive for control and freedom to choose for themselves, others will acquiesce to the overwhelming changes wrought in their lives. Thus, health care professionals might consider placing the personal meanings of those who are dialysis-dependent to the fore, being sensitive to the sufferings wrought by the regime, which treats but does not cure, which sustains life but does not heal.

Continuity of care and general wellbeing of patients with comorbidities requiring joint replacement

Aim. The aim of this paper is to examine the continuity of care and general wellbeing of patients with comorbidities undergoing elective total hip or knee joint replacement.
Background. Advances in medical science and improved lifestyles have reduced mortality rates in most Western countries. As a result, there is an ageing population with a concomitant growth in the number of people who are living with multiple chronic illnesses, commonly referred to as comorbidities. These patients often require acute care services, creating a blend of acute and chronic illness needs. For example, joint replacement surgery is frequently performed to improve impaired mobility associated with osteoarthritis.
Method. A purposive sample of twenty participants with multiple comorbidities who required joint replacement surgery was recruited to obtain survey, interview and medical record audit data. Data were collected during 2004 and 2005.
Findings. Comorbidity care was poorly co-ordinated prior to having surgery, during the acute care stay and following surgery and primarily entailed prescribed medicines. The main focus in acute care was patient throughput following joint replacement surgery according to a prescribed clinical pathway. General wellbeing was less than optimal: participants reported pain, fatigue, insomnia and alterations in urinary elimination as the chief sources of discomfort during the course of the study.
Conclusion. Continuity of care of comorbidities was lacking. Comorbidities affected patient general wellbeing and delayed recovery from surgery. Acute care, clinical pathways and the specialisation of medicine and nursing subordinated the general problem of patients with comorbidities. Systems designed to integrate and co-ordinate chronic illness care had limited application in the acute care setting. A multidisciplinary, holistic approach is required. Recommendations for further research conclude this paper.

Telling it how it really is?

Heideggerian phenomenology is expounded here as a qualitative methodology of value in researching "how things really are" in organizational life. It is a methodology, and a philosophy, that recognizes a priori the value of the subjective, lived experience of the individual, and the physical, sociological, and psychological phenomena that come together to create a life-world. In this paper, the authors present three cases where this methodology successfully revealed the employee's reality. Stories about working in teams, being downsized, and having an unseen chronic illness at work are shared to demonstrate the ability of Heideggerian phenomenology to reveal how life really is in organizations. The benefit for HR practitioners and managers is an increased understanding of and, hence, ability to address these sensitive and often unspoken aspects of organizational life.

Issues concerning the on-going care of patients with comorbidities in acute care and post-discharge in Australia: a literature review

Issues concerning the on-going care of patients with comorbidities in acute care and post-discharge in Australia: a literature review

Background. Advances in medical science and improved lifestyles have reduced mortality rates in Australia and most western countries. This has resulted in an ageing population with a concomitant growth in the number of people who are living with chronic illnesses. Indeed a significant number of younger people experience more than one chronic illness. Large numbers of these may require repeated admissions to hospital for acute or episodic care that is superimposed upon the needs of their chronic conditions.

Aim. To explore the issues that circumscribe the complexities of caring for people with concurrent chronic illnesses, or comorbidities, in the acute care setting and postdischarge.

Methods. A literature review to examine the issues that impact upon the provision of comprehensive care to patients with comorbidities in the acute care setting and postdischarge.

Findings. Few studies have investigated this subject. From an Australian perspective, it is evident that the structure of the current health care environment has made it difficult to meet the needs of patients with comorbidities in the acute care setting and postdischarge. This is of major concern for nurses attempting to provide comprehensive care to an increasingly prevalent group of chronically ill people.

Conclusion. Further research is necessary to explore how episodic care is integrated into the on-going management of patients with comorbidities and how nurse clinicians can better use an episode of acute illness as an opportunity to review their overall management.

The SARS (Severe Acute Respiratory Syndrome) pandemic in Hong Kong : effects on the subjective wellbeing of elderly and younger people

Objectives: This study examined the impact of the Severe Acute Respiratory Syndrome (SARS) outbreak in Hong Kong in 2003, on the subjective wellbeing (SWB) of elderly people and a younger comparative sample. The Personal Wellbeing Index (PWI), a contemporary instrument employed to measure SWB, was also examined for its psychometric performance to substantiate its use.

Method: A total of 302 older adults (age 65 + years) and 158 younger adults (age 35-46 years) were recruited from different districts. Data were collected by individual face-to-face interviews.

Result: While elderly people living in severely infected districts showed significantly lower levels of SWB, these levels and those of the younger sample were found to remain within the normative range. A major mitigating factor was an increased sense of community-connectedness. Other characteristics linked to low wellbeing levels included chronic illness, female gender, low education and unemployment. The living districts, characterized by varying extents of infection, had stronger associations with SWB than participants' age. The PWI demonstrated good psychometric performance and also more robustness with elderly people, including its sensitivity to the sense of population threat.

Conclusion: Psychological resilience was identified among both the elderly and younger age-groups in Hong Kong during the SARS pandemic. The PWI is verified as a suitable instrument for SWB measurements.

Does self-management lead to sustainable health benefits in people with arthritis? A 2-year transition study of 452 Australians.

Objective: To evaluate the Arthritis Self-Management Course (ASMC) when applied in a nationwide context.

Methods: Four hundred fifty-two people who participated in the ASMC across Australian states took part in a longitudinal followup study. ASMC is a 6 week, 2 h group educational program designed to assist people with chronic illness to better manage their condition. Measures of program effectiveness included health status and service utilization. Data were collected on 3 occasions: before intervention (baseline) and 6 months and 2 years after the program.

Results: Several indicators of health status showed improvement at 6 months following the ASMC. These included reduction in pain (4%; p < 0.001), fatigue (3%; p < 0.01), and health distress (12%; p < 0.001) as well as increase in self-efficacy (6%; p < 0.001). Increased self-efficacy was a significant predictor of positive change in health status. Health-related behaviors such as aerobic exercise also increased, with the proportion of people who did little or no exercise decreasing by up to 8%. These changes were sustained at 2 years. There was an increase in use of analgesics at 6 months and an increase in use of nonsteroidal antiinflammatory drugs at 2 years. No changes in healthcare utilization (physician visits, allied health visits, and hospitalizations) were observed.

Conclusion: The ASMC is a widely applied program in which participants benefit through a reduction in pain, fatigue, and health distress. Although the absolute changes in health status are small, the low cost and wide application of the intervention suggests the program may have a substantial public health effect.