Thèse numérisée par la Division de la gestion de documents et des archives de l'Université de Montréal

Le diagnostic de sclérose en plaques (SEP) a d’importantes répercussions pour les personnes affectées en raison de son caractère incurable et dégénératif. Vu les pertes fonctionnelles, la SEP nécessite fréquemment une implication des professionnels des centres locaux de services communautaires. Depuis quelques années, l’approche palliative s’est développée afin de soutenir les professionnels dans leur accompagnement en regard de la fin de vie. Cependant, aucun écrit identifié ne fait le lien entre la SEP et l’approche palliative en milieu communautaire. Cette étude qualitative descriptive a pour but de connaître les perceptions de professionnels œuvrant au soutien à domicile à l’égard de l’introduction d’une approche palliative dans la trajectoire de soins des personnes vivant avec la SEP au stade avancé. Structurés par le modèle infirmier de gestion des maladies chroniques basé sur la théorie des trajectoires de Corbin et Strauss (1991), des groupes de discussions et des entretiens individuels ont été effectués avec des ergothérapeutes, des infirmières et des travailleurs sociaux. L’analyse des données s’appuie sur la méthode d’analyse par questionnement analytique de Paillé et Mucchielli (2012). En somme, cette analyse des données permet de décrire que les professionnels oeuvrant au soutien à domicile considèrent l’approche palliative comme 1) faire preuve de soutien, 2) ouvrir la discussion avec la personne soignée et sa famille sur ses besoins et désirs entourant sa fin de vie et 3) adapter ses interventions professionnelles aux besoins et aux objectifs de la personne et sa famille. Bien qu’ils considèrent obligatoire d’introduire l’approche palliative, ils ne se sentent pas à l’aise de l’initier systématiquement dans la prestation de leurs soins. Les professionnels rapportent aussi plusieurs difficultés à amorcer une discussion à ce sujet considérant les caractéristiques de la maladie, l’âge des personnes atteintes, l’absence de pronostic ou la crainte de perte d’espoir. Des recommandations pour la gestion, la pratique, la formation et la recherche en sciences infirmières ont été émises à la suite de cette étude. / The diagnosis of multiple sclerosis (MS) has important implications for people affected by its incurable and degenerative nature. MS, resulting in significant functional losses, often requires the involvement of professionals from local community service centres. In recent years, the palliative approach has been described for professionals in their end-of-life support. However, no identified literature links MS to the community-based palliative approach. This qualitative descriptive study has been designed to describe the perceptions of professionals working at home with regard to the introduction of palliative approach in the care trajectory of people living with advanced MS. Based on the nursing model for chronic disease management based upon the trajectory framework of Corbin and Strauss's (1991), focus groups and individual interviews were conducted with occupational therapists, nurses and social workers. The method of analysis by analytical questioning of Paillé and Mucchielli (2012) was used for data analysis. In summary, the data analysis has allowed us to describe the professionals' views of introducing a palliative approach into their care of people with MS as 1) being supportive, 2) opening the discussion with the person and his family about their needs and their desires at the end of life and 3) adapting professional interventions to people and families’ needs and objectives. However, professionals had several difficulties introducing these elements, considering the characteristics of the disease, the absence of prognosis and the risk of loosing hope. They described a duality in which they consider it mandatory to introduce the palliative approach, but do not feel comfortable integrating it systematically into the delivery of their care. Recommendations for nursing management, practice, education and research were issued as a result of this study.

Magister Public Health - MPH / The Zambia Demographic Health Survey reports that 81% of the population of Mansa District, Zambia lives in extreme poverty. Eleven percent (11%) of this population is estimated to be HIV positive. Many of this HIV positive population were the primary breadwinners in their households prior to the onset of AIDS. The majority of them are cared for by family members (PCGs) with limited training. Home Based Care programmes provide care and support to patients at their homes. However, this support does not extend to the caregivers. This explorative study investigated the psychological, social and informational needs of primary caregivers of AIDS patients in Mansa District, Zambia. It was envisaged that the findings of the study would assist home-based care organizations to provide comprehensive support and care to the primary caregivers, in addition to patients. Methods A qualitative research approach was chosen to gain an in-depth understanding of healthrelated experiences of caregivers while taking into consideration the context within which this phenomenon takes place. Twenty-six caregivers who provide basic care and support to family members who had advanced HIV-disease were recruited into the study. All AIDS patients in the study were former breadwinners of their households. Purposive, maximum variation sampling was used to select non-homogeneous cases of family caregivers, who provided services to AIDS patients within their homes. It was envisaged that such a heterogeneous sample would provide wide variations in experiences, and this would contribute to the range of issues pertaining to caregiver needs being covered. Three Focus group discussions were conducted, audio-tape recorded and transcribed. Findings The findings of the study highlight that caregivers have the following psychological needs: reciprocated sympathy and appreciation from society and their patients, stress coping mechanisms, and the capacity to display patience despite unreasonable demands made by the patients for whom they are caring. The study highlights that caregivers face numerous challenges in dealing with conflicting relationships and in handling stigma and discrimination, and that they are in need of a strong social support network. It also emphasizes that many of the primary caregivers lack adequate information about social services organizations that can assist them with training. The training will enable those (PCGs) to provide care in a manner that does not compromise the safety of the patients or themselves, as well as give them opportunities for education and skills development for income generation that will make it possible for them to provide for the upkeep of the family. Conclusions Home-based care workers are best placed to support PCGs at home. The training of such home-based workers should be extended to take in consideration the specific needs of these caregivers. In addition, the role of primary caregivers should be acknowledged in national HIV/AIDS strategies.

Institute for Rural Development / PhDRDV

Institutionen för vårdvetenskap, 2024.Bakgrund: Forskning visar att patienter föredrar att vårdas och dö i det egna hemmet. Att vårda patienter i livets slutskede inom ordinärt boende ställer höga krav på sjuksköterskans kunskap och kompetens inom ordinärt boende för att kunna hantera komplexa medicinska och psykosociala utmaningar. Syfte: Syftet med litteraturstudien var att beskriva sjuksköterskans upplevelse av att vårda patienter i livets slutskede i ordinärt boende. Metod: Litteraturstudien baseras på resultaten från tio vetenskapliga artiklar med kvalitativ ansats. Databaserna PubMed och Cinahl har använts för att identifiera artiklar av relevans för syftet. De tio artiklarna kvalitetsgranskades utifrån SBU:s mall, och analyserades utifrån Popenoes principer för dataanalys. Resultat: Två kategorier identifierades: Utmaningar i arbetet och Betydelsen av en välfungerande verksamhet. Sex subkategorier identifierades och de var följande: Känsla av maktlöshet, Känsla av otillräcklighet, Känslomässig och existentiell påfrestning, Svårigheter i samverkan inom teamet, Betydelsen av en välfungerande verksamhet, Vikten av goda relationer till patienter och närstående samt Vikten av stöd och struktur i arbetet. Konklusion: Studiens resultat tyder på att sjuksköterskor står inför en mångfald av utmaningar när det gäller att vårda patienter i livets slutskede i hemmet. Det fanns exempelvis stress på arbetsplatsen, höga krav, brist på kontroll över arbetsuppgifter, att inte ha blivit sedd, hörd samt respekterad vilket kunde leda till känslor av otillräcklighet och svårigheter i samverkan inom teamet. För att kunna erbjuda en god vård till patienter i livets slutskede inom ordinärt boende är det viktigt att sjuksköterskan får ett gott stöd, både från verksamheten och kollegor. / Background: Research shows that patients prefer to be cared for and die at home. Caring for patients at the end of life in community settings places high demands on the knowledge and skills of community nurses to deal with complex medical and psychosocial challenges. Aim: The purpose of the literature review was to describe the nurse's experience of providing home-based end-of-life palliative care. Method: The literature review was based on the results of ten scientific articles with qualitative approaches. The databases PubMed and Cinahl were used to identify articles that met the study's inclusion criteria. The SBU template was used to review the articles. Results: Two categories were identified: Challenges at work, and Importance of a well-functioning organization. Six subcategories were identified and they were as follows: Feeling powerless, Feeling inadequate, Emotional and existential stress, Difficulties in collaboration within the team, The importance of a well-functioning organization, The importance of good relations with patients and relatives and the importance of support and structure in the work.Conclusion: The study findings suggest that nurses face a variety of challenges in caring for patients at the end of life at home. These included workplace stress, high demands, lack of control over tasks, not being seen, heard and respected, which could lead to feelings of inadequacy and difficulties in team collaboration. In order to offer good care to patients at the end of life in ordinary housing, it is important that the nurse receives good support, both from the organization and colleagues.

Palliativ vård infaller då en patient är obotligt sjuk och närmar sig livets slutskede. Vården bör vara inriktad på att främja livskvalitet och lindra patientens mångsidiga lidande. Barn som vårdas för obotlig sjukdom kräver personcentrerad vård där föräldrar och anhöriga inkluderas och blir delaktiga. Sjuksköterskan bör vidare bemöta patientens och anhörigas unika livsvärld för att skapa möjlighet till vårdande möten. Att vårda ett döende barn i hemmiljö avviker från den naturliga vårdrelationen som sjuksköterskan har med patienten och är mycket komplext för sjuksköterskan. Syftet med litteraturöversikten är att belysa sjuksköterskans upplevelse av att vårda barn i ett palliativt skede i hemmiljö. Litteraturöversikten utgår från kvalitativa och kvantitativa artiklar och dess analys samt kvalitetsgranskning grundar sig på Fribergs analysprocess. Studiens resultat har genererat fyra teman som tillsammans sammanfattar sjuksköterskans erfarenheter av att vårda palliativt sjuka barn i hemmiljö: förtroendefulla relationer, emotionella reaktioner, etiska och moraliska dilemman samt utmaningar och strategier. Resultatet speglar vikten av betydelsefulla relationer, vilka komplexa emotionella reaktioner som uppstår hos sjuksköterskan samt mängden av upplevda etiska och moraliska dilemman vid pediatrisk palliativ vård i hemmiljö. Vidare visar resultaten att sjuksköterskor identifierat många brister i hälso- och sjukvårdens resurser men att sjuksköterskor trots det hittar styrka och finner mening i arbetet. Genom kontinuerliga utbildningar och tillgång till rätt resurser skapas grundläggande förutsättningar för sjuksköterskan gällande pediatrisk palliativ vård i hemmiljö. Genom att belysa de komplexa situationer sjuksköterskan erfar i pediatrisk palliativ vård kan förbättringsområden identifieras. / Palliative care occurs when a patient is terminally ill and approaching the end of life. Care should be aimed at promoting quality of life and alleviating the patient's multifaceted suffering. Children who are treated for an incurable disease require person-centered care where parents and relatives are included and become participants. The nurse should also respond to the unique life situation of the patient and relatives in order to create opportunities for caring encounters. Caring for a terminally ill child deviates from the natural care relationship that the nurse has with the patient. The purpose of the literature review is to shed light on nurses' experiences of caring for children in a palliative stage in a home environment. The literature review is based on qualitative and quantitative research and the analysis and quality review is based on Friberg's analysis process. The results of the study have generated four themes that together summarize nurses' experiences of caring for terminally ill children in the home environment: trusting relationships, emotional reactions, ethical and moral dilemmas as well as challenges and strategies. The result reflects the importance of significant relationships, the complex emotional reactions that arise in the nurse, and the amount of perceived ethical and moral dilemmas in pediatric palliative care in the home environment. Furthermore, the results show that nurses have identified many shortcomings in health care resources, but that despite this, nurses find strength and meaning in their work. Through continuous training and access to the right resources, basic prerequisites are created for the nurse regarding pediatric palliative care in a home environment. By highlighting the complex situation the nurse experiences in pediatric palliative care, areas for improvement can be identified.

Introduction: There is a growing interest in how technology can be used in order to provide efficient healthcare. Aim: The aim is to explore perceptions on the use of home telemonitoring in patients with COPD.                                                                                                                             Method: Semi-structured individual interviews were carried out with eight women and five men who were part of a larger project aiming to develop and evaluate a telemonitoring system. Participants were interviewed after having used the system for two to four months. Interview transcripts were analysed with qualitative content analysis. Results: The analysis resulted in the theme a transition towards increased control and security and the categories: facing enablers or barriers, increasing control over the disease, providing easy access to care and affecting technical confidence or concern. Participants expressed initial feelings of insecurity, both in practical aspects using the telemonitoring system as well as regarding their disease. The telemonitoring system could reinforce and confirm the participants´ feelings of their current state of health, and the practical management of the telemonitoring system became easier with time.     Conclusion: Telemonitoring can be a valuable complement to healthcare with the potential to contribute to equity in care. However, in order to improve further development and implementation of telemonitoring, several actions are needed such as improved patient education and the use of co-creation. Additional research is needed particularly in the design of user-friendly systems as well as tools to predict which patients are most likely to find the equipment useful as it may result in reduced costs and increased empowerment. / Introduktion: Intresset för hur teknologi kan användas för att erbjuda effektiv sjukvård ökar. Syfte: Syftet är att utforska KOL-patienters upplevelse av att använda ett webbaserat rapporteringssystem i hemmet. Metod: Semi-strukturerade individuella intervjuer med åtta kvinnor och fem män som deltog i ett större projekt med syfte att utveckla och utvärdera ett webbaserat rapporteringssystem. De intervjuades efter att ha använt systemet två till fyra månader. Intervjuerna analyserades med kvalitativ innehållsanalys. Resultat: Analysen resulterade i temat en övergång till ökad kontroll och trygghet samt kategorierna: möta möjligheter eller hinder, ökad kontroll över sjukdomen, skapar lättillgänglig vård samt påverkar teknisk självkänsla eller oro. Deltagarna uttryckte till en början osäkerhetskänslor, både vad gäller praktiska aspekter i användandet av rapporteringssystemet samt kring själva sjukdomen. Det webbaserade rapporteringssystemet kunde förstärka och bekräfta deltagarnas egna känsla av mående och det praktiska hanterandet av rapporteringssytemet blev lättare med tiden. Konklusion: Webbaserade rapporteringssystem kan vara ett värdefullt komplement till sjukvården med potential att bidra till jämlik vård. I syfte att förbättra fortsatt utveckling och implementering bör förbättrad patientinformation samt vikten av att ta med användarna i utformningen beaktas. Mer forskning behövs för att optimera användarvänlighet samt att identifiera de patienter som har bäst nytta av systemet då det kan ge hälsoekonomiska vinster och inte minst öka patienters delaktighet.

The purpose of this study was to describe the experiences that HIV and AIDS patients who are on Community Home Based Care Programme have in the Lilongwe district of Malawi. Finally; concrete propositions were developed for the implementation of quality community and home based care programmes in Malawi. A qualitative research design using an interpretive phenomenology was used. The study took place in semi-rural and urban areas of Lilongwe district using patients from 3 major organizations dealing with people living with HIV and AIDS. Purposive sampling technique was used to choose the sample and a total of 15 in-depth interviews were conducted. Data was analyzed using ATLAS ti version 5. Findings revealed that the majority of the participants were concerned that they were living with HIV and AIDS. Most of them expressed anxiety, worries and fears of death. Another majority complained about the burden of opportunistic infections. Almost half of the participants felt guilty bringing misery to their families and complained of stigma and discrimination. However, a minority group of participants felt that to live with HIV and AIDS is not the end of life. Relatives were mentioned as the main care providers to HIV and AIDS patients. However, they were also cited high as a source of stigma. Conclusions were made that women and girls are at the highest risk as they bear the burden of care. It was therefore recommended that the Government of Malawi and all Non Governmental Organizations should develop women social economic status through promotion of education, provision of loans and provision of Gender Sensitive trainings. Formal training for care of HIV and AIDS patients should be introduced to all primary caregivers to render quality care in the homes and therefore this study has developed and pre-tested an educational program for this group. / Health Studies / D. Litt. et Phil. (Health Studies)

<p>The general aim of this dissertation is to describe and analyse how public old-age care in Sweden has developed and changed during the last century. The study applies a provider perspective on how care has been planned and professionally carried out. A broader social policy perspective, studying old-age care at central/national as well as local/municipal level, is also developed. A special focus is directed at the large local variation in care and services for the elderly. The empirical base is comprised of official documents and other public sources, survey data from interviews with elderly recipients of public old-age care, and official statistics on publicly financed and controlled old-age care and services.</p><p>Study I addresses the development of old-age care in Sweden during the twentieth century by studying an important occupation in this field – the supervisors and their professional roles, tasks and working conditions. Throughout, the roles of supervisors have followed the prevailing official policy on the proper way to provide care for elderly people in Sweden; from poor relief at the beginning of the 1900s, via a generous level of services in the 1960s and 1970s, to today’s restricted and economy-controlled mode of operation.</p><p>Study II describes and compares two main forms of public old-age care in Sweden today, home help services and institutional care. The care-load found in home-based care was comparable to and sometimes even larger than in service-homes and other institutions, indicating that large care needs among elderly people in Sweden today can be met in their homes as well as in institutional settings.</p><p>Studies III and IV analyse the local variation in public old-age care in Sweden. During the last decades there has been an overall decline in home help services. The coverage of home help for elderly people shows large differences between municipalities throughout this period, and the relative variation has increased. The local disparity seems to depend more on historical factors, e.g., previous coverage rates, than on the present municipal situation in levels of need or local economy and politics.</p><p>In an introductory part the four papers are linked together by an outline of the demographic situation and the social policy model for old-age care in Sweden. Trends that have been apparent over time, e.g. professionalisation and market orientation, are traced and discussed. Conflicts between prevailing ideologies are analysed, in regards to for instance home-based and institution-based care, social and medical culture, and local and central levels of decision-making. ’Welfare municipality’, ‘path dependency’, and ‘decentralisation’ are suggested as a conceptual framework for describing the large and increasing local variations in old-age care. Finally, implications of the four studies with regard to old-age care policy and further research are discussed.</p>

The purpose of this study was to describe the experiences that HIV and AIDS patients who are on Community Home Based Care Programme have in the Lilongwe district of Malawi. Finally; concrete propositions were developed for the implementation of quality community and home based care programmes in Malawi. A qualitative research design using an interpretive phenomenology was used. The study took place in semi-rural and urban areas of Lilongwe district using patients from 3 major organizations dealing with people living with HIV and AIDS. Purposive sampling technique was used to choose the sample and a total of 15 in-depth interviews were conducted. Data was analyzed using ATLAS ti version 5. Findings revealed that the majority of the participants were concerned that they were living with HIV and AIDS. Most of them expressed anxiety, worries and fears of death. Another majority complained about the burden of opportunistic infections. Almost half of the participants felt guilty bringing misery to their families and complained of stigma and discrimination. However, a minority group of participants felt that to live with HIV and AIDS is not the end of life. Relatives were mentioned as the main care providers to HIV and AIDS patients. However, they were also cited high as a source of stigma. Conclusions were made that women and girls are at the highest risk as they bear the burden of care. It was therefore recommended that the Government of Malawi and all Non Governmental Organizations should develop women social economic status through promotion of education, provision of loans and provision of Gender Sensitive trainings. Formal training for care of HIV and AIDS patients should be introduced to all primary caregivers to render quality care in the homes and therefore this study has developed and pre-tested an educational program for this group. / Health Studies / D. Litt. et Phil. (Health Studies)