Volunteer caregivers provide essential services to people in the terminal stages of AIDS and their families. Volunteers are exposed to stress and burnout. This study investigated the relationships between stress, coping strategies, levels of burnout and resilience in this population. Volunteers from Societas ‘O Sosiale (SOS) Children Villages and community based organisation (CBO) partnerships, were selected using non-probability purposive convenience sampling. A total of 110 participants were given the Experience of Work and Life Circumstances Questionnaire (WLQ), Brief-Cope, Maslach’s Burnout Inventory (MBI), a Resilience scale and the Living Standard Measure to complete. Statistical analyses were performed on the data. This includes descriptive statistics, reliability analysis, factor analysis, correlations and multivariate analysis of variance. The study found that volunteer caregivers experience high stress levels and burnout related to stressors outside work, remuneration, personnel policies and high resilience. High burnout is associated with all forms of coping. Further it is shown that training in problem-solving skills, counselling, government and public lobbying for support, registration with relevant professional bodies, furnished offices, reasonable recruitment requirements and compensation are needed to help the care givers avert the effect of stressors and control stress by stopping it from turning to burnout. / Psychology / M.A. (Psychology with specialisation in Research Consultation)

The past two decades have witnessed transition from in-patient hospital settings to Community and Home Based Care in Zimbabwe. This is because of an increase in the number of people developing chronic health conditions such as diabetes, hypertension and cancers, and thus needing longer treatment durations. The increase in chronic conditions has mainly been attributed to the increase in incidence and prevalence of Human Immunodeficiency Virus and Acquired Immune-deficiency Syndrome in Sub-Saharan Africa. Many Governments, including that of Zimbabwe, endorsed and promoted community and home based care to provide a continuum of care to the chronically ill. Despite the implementation of Community and Home Based Care programmes, no studies known to the researcher have been done to investigate the congruency of service users’ needs and the programme goals. Purpose: The purpose of the study is twofold; firstly to explore whether Community and Home Based Care interventions provide services that effectively meet users’ goals in a dynamic social environment and secondly, to develop guidelines for enhancing care provision as well as congruency of service users’ needs and programme goals. Methods: A mixed-method approach combining qualitative and quantitative data collection and analysis was used. Concurrent collection of data with equal status was placed on both qualitative and quantitative data. For qualitative data interviews and focus groups were used with home based care service users, family care givers, and health providers. Structured questionnaires were used for the quantitative data. Framework: Imogene King’s Interacting Systems Framework and Theory of Goal Attainment were adopted to guide the study. These were utilised because of the assumption that mutual agreement on goals for effective care can be achieved through nurse-client interactions and communication Research findings: Community and Home Based Care programme in Zimbabwe does not comprehensively meet the needs of its service users. Service users have diverse needs and goals depending on the specific condition and symptoms they experience. They perceive access to medication for symptom management and pain control, food and financial stability, as priority needs. The study found that nursing services provided in Community and Home Based Care generally align with the physical needs of service users and was deficient in addressing the socio-economic and psycho-social needs of service users. Conclusion: No single sector can achieve the users’ and the programme`s goals of quality health on its own. The goals may only be realised when other stakeholders and relevant sectors contribute to the Community and Home Based Care programme, which requires diverse resources. Guidelines to enhance integration of Community and Home Based Care with social services were developed. / Health Studies / D.Litt. et Phil. (Health Studies)

The purpose of this study was to explore nurse-patient encounters from the perspective of the Home Healthcare Registered Nurse. A qualitative descriptive design was used to collect data from a purposive sample of 20 home healthcare registered nurses from Connecticut, Massachusetts, and Rhode Island currently or previously employed as a home healthcare nurse. Four themes and one interconnecting theme emerged from the data: Objective Language; Navigating the Unknown; Mitigating Risk; Looking for Reciprocality in the Encounter; and the interconnecting theme of Acknowledging Not All Nurse-Patient Encounters Go Well. One goal of the study was to propose an empirically informed definition of what constituted a difficult encounter. An important early finding was that the terms difficult patient and difficult encounter were not generally used by study participants. HHC RNs voiced a preference for objective and nonjudgmental language to communicate outcomes of nurse-patient encounters. Three types of HHC RN-patient interactions emerged from the data, with constructive encounters the norm and non-constructive or destructive encounters less frequent. A constructive encounter is when two or more human beings, the nurse on the one side, and the patient, caregiver, or both on the other, interact to achieve a mutually agreed upon outcome. A nonconstructive encounter is when one or more human beings obstruct efforts to achieve at least one positive outcome. A destructive encounter is when one or more human beings direct anger at or physically aggress toward another human being. Strategies to promote reciprocality are routinely employed during HHC RN-patient encounters, but HHC RNs who miss cues that a strategy is ineffective or failed may be at risk in the home. Study data lend support to key concepts, assumptions, and propositions of Travelbee’s (1971) Human-to-Human Relationship Model. Study results provide a foundation for further research to increase the understanding, recognition, and development of empirically derived responses to non-constructive or destructive encounters such that HHC RNs are safe and best able to meet patients’ healthcare needs.

Abstrakt Bakgrund: En del av den sjukvård som utförs i hemmet av distriktssköterskor är palliativ vård, som syftar till att lindra lidande och främja livskvaliteten hos personer vid livets slut. Personer i behov av vård i livets slutskede har komplexa behov som behöver tillgodoses ur ett helhetsperspektiv. Syfte: Syftet var att beskriva distriktssköterskors upplevelser av vård i livets slutskede inom hemsjukvård. Metod: Studien har en kvalitativ design, med en induktiv ansats. Datainsamlingen genomfördes via individuella semistrukturerade intervjuer med åtta distriktssköterskor med erfarenhet av vård i livets slutskede. Analysen genomfördes med en kvalitativ innehållsanalys med manifest ansats. Resultat: Analysen resulterade i fem kategorier: Att främja en trygg relation till personen, Att främja en god relation och ett gott samarbete med närstående, Att lindra lidande och främja välbefinnande, Att vara en del av ett team och Att vara i behov av mer resurser. Slutsats: För att säkerställa en hög vårdkvalitet för personer i behov av vård i livets slutskede, skulle arbetsmiljön inom hemsjukvården behöva utvecklas så att distriktssköterskor får förutsättningar att använda nödvändiga resurser. Tillräckliga resurser, såsom bland annat tid, skulle öka deras möjligheter att främja hälsa och välbefinnande hos de svårt sjuka personerna samt öka deras egen arbetstillfredsställelse till följd av minskad stress

No / Enabling patients to be cared for in their preferred location often involves journeys between care settings. The challenge of ensuring journeys are timely and safe emerged as an important issue in an evaluation of palliative care services, which informed a service redesign programme in three areas of the United Kingdom by the Marie Curie Cancer Care 'Delivering Choice Programme'. This article explores perceptions of service users and key stakeholders of palliative care services about problems encountered in journeys between care settings during end-of-life care. This article draws on data from interviews with stakeholders (n = 44), patients (n = 16), carers (n = 19) and bereaved carers (n = 20); and focus groups (n = 9) with specialist nurses. Data were gathered in three areas of the United Kingdom. Data were analysed using a framework approach. Transport problems between care settings emerged as a key theme. Four particular problems were identified: (1) urgent need for transport due to patients' rapidly changing condition; (2) limited time to organise transfers; (3) the management of specialist equipment and (4) the need to clarify the resuscitation status of patients. Partnership working between Ambulance Services and secondary care is required to develop joint protocols of care to ensure timely and safe transportation between care settings of patients, who are near their end of life. Commissioning of services should be responsive to the complexities of patients' needs and those of their families.

This study investigated access and use of information in the health-care of home-based elderly people (EPs) in Nakuru District, Kenya. The literature review revealed a gap with respect to information behaviour in health-care of EPs in a development context. The researcher used qualitative methods; with exploratory and descriptive research design because the focus of the study was on the littleknown and socially disadvantaged community of EPs in Nakuru District. Respondents were sampled by using the snowball technique. At the end of an interview session, each respondent was encouraged to nominate someone who either shared the same or had different experiences, views, socio-economic levels and gender. The researcher collected data through face-to-face interviews with EPs, informal care providers (ICPs) and formal health-care providers (FHCPs), in order to gain insight of information behaviour in health-care of EPs, by focusing on aspects of information needs; sources; use of information and factors that influence the respective groups of respondents to access and use health-care information health-care of EPs. The findings showed that the respective groups of respondents had similar as well as diversified needs for information for health-care. The groups used both formal and informal sources of information and channels of communication to access information for health-care, with FHCPs using authoritative sources more than the EPs and ICPs. Factors such as being a professional or a lay person, cost, ease of accessibility, availability of sources and channels of communication, time and trustworthiness of a source or channel of communication determined preference for use of information. The major contribution of the study is to the theory about information behaviour: some EPs and ICPs used CAM services without informing FHCPs, thereby revealing a form of concealed information use behaviour (CIUB). / Information Science / D. Litt. et Phil. (Information Science)

The purpose of this study was to determine how pain in PLHIV on community home based care programme was managed using the Roy adaptation model (RAM) as the theoretical framework. This study used a descriptive mixed method research design which allowed for the research topic to be investigated and described in terms of both narrative qualitative accounts and descriptive statistics. A sequential exploratory approach was adopted in which qualitative data collection was conducted in the initial phase followed by quantitative data collection. Ten qualitative interviews, guided by the components of the RAM were conducted in the initial phase and a structured interview schedule (questionnaire) partially based on the result of the qualitative phase and (which was also structured in accordance with the RAM) was administered to 120 respondents who met the inclusion criteria of being on CHBC. Convenience sampling was used to select study participants and respondents in both phases of the study. Peripheral neuropathy was the most common pain syndrome experienced by patients. More females suffered numbness/tingling sensation of toes, followed by chest pains than their male counterparts. Pain experienced was moderate to severe which was not treated effectively. The study findings could assist health care providers, policy makers and researchers to invest into improving pain management for PLHIV, strengthen education of patients and their primary caregivers on the causes of pain and modalities to employ for pain relief and implement palliative care guidelines for PLHIV. / Health Studies / D. Litt. et Phil. (Health Studies)

In South Africa prior to 1994, community-based care and support services were established for whites only. The majority of older African (black) persons received informal support from their adult children and relatives. This has waned over the years due to the social and economic changes that have put into doubt the continued viability of such support. The Older Persons Act of 2006 requires social workers to establish community-based care and support services for older persons. Hence, the study was conducted to understand the factors that influence social workers in establishing CBCSS for older persons in Bloemfontein in the Free State Province. A qualitative research method was undertaken to accomplish the goal of the study. Purposive and snowball sampling techniques were used to identify suitable participants. Face-to-face semi-structured interviews were conducted with fifteen social workers who provide services to older persons. The data was analysed through Tesch’s (cited by Creswell, 2009:186) eight steps of qualitative analysis and data verification was conducted following Guba’s (Kreftling, 1991) model. The major finding is that there is a need for social workers to specialise in older persons programmes (gerontology). For the programmes to be a success, it is recommended that the Department of Social Development (DSD) strive to retain social workers who are knowledgeable and experienced in older persons programmes. / Social Work / M.A. (Social Science)

According to the Ministry of Health (1996:26), the most common chronic/terminal illnesses were cardiovascular disorders, diabetes, cancer, mental disorders, HIV/AIDS, tuberculosis and asthma. Long term treatment and care and the growing incidence of these conditions necessitated the introduction of home-based care (HBC). Consequently, family care givers play a major role in the provision of care to chronically/terminally ill patients and professional health care providers adopt a supervisory role. This study examined the quality of home care services provided in Botswana. The availability and accessibility of home-based care services and resources have a direct bearing on the quality of home-based care delivery system. The researcher used systems theory was used as the conceptual framework for this study. The study aimed to • determine the accessibility and availability of home-based care services in Molepolole East • investigate what the perspectives and experiences of family care givers, patients and professional health care providers of Botswana home-based care are • determine the roles of professionals health care providers, patients, and family care givers and their relationships in the context of home- based care • identify the needs of chronically/terminally ill patents and family care givers • determine the type of support given to family care givers and patients by professional health care providers and make recommendations for the improvement of home-based care • develop a model to prepare family care givers The research design combined quantitative and qualitative research methods. A sample of convenience was used to obtain information from patients' family care givers and professional health care providers. Interviews and questionnaires were used. A proposed care giving preparedness model is presented to meet needs of the family care givers. The study found that family care givers needs are neither known nor catered for by the professional health care provider. The family care givers were not adequately prepared before adopting the care-giving role. It is recommended that • The proposed preparedness care giving training model is considered for training of patients and family care givers before discharge and during HBC. • Increase patients and family care givers decision-making / Health Studies / D.Litt. et Phil. (Health Studies)

Les chutes chez les personnes âgées représentent un problème majeur. Il n’est donc pas étonnant que l’identification des facteurs qui en accroissent le risque ait mobilisé autant d’attention. Les aînés plus fragiles ayant besoin de soutien pour vivre dans la communauté sont néanmoins demeurés le parent pauvre de la recherche, bien que, plus récemment, les autorités québécoises en aient fait une cible d’intervention prioritaire. Les études d’observation prospectives sont particulièrement indiquées pour étudier les facteurs de risque de chutes chez les personnes âgées. Leur identification optimale est cependant compliquée par le fait que l’exposition aux facteurs de risque peut varier au cours du suivi et qu’un même individu peut subir plus d’un événement. Il y a 20 ans, des chercheurs ont tenté de sensibiliser leurs homologues à cet égard, mais leurs efforts sont demeurés vains. On continue aujourd’hui à faire peu de cas de ces considérations, se concentrant sur la proportion des personnes ayant fait une chute ou sur le temps écoulé jusqu’à la première chute. On écarte du coup une quantité importante d’information pertinente. Dans cette thèse, nous examinons les méthodes en usage et nous proposons une extension du modèle de risques de Cox. Nous illustrons cette méthode par une étude des facteurs de risque susceptibles d’être associés à des chutes parmi un groupe de 959 personnes âgées ayant eu recours aux services publics de soutien à domicile. Nous comparons les résultats obtenus avec la méthode de Wei, Lin et Weissfeld à ceux obtenus avec d’autres méthodes, dont la régression logistique conventionnelle, la régression logistique groupée, la régression binomiale négative et la régression d’Andersen et Gill. L’investigation est caractérisée par des prises de mesures répétées des facteurs de risque au domicile des participants et par des relances téléphoniques mensuelles visant à documenter la survenue des chutes. Les facteurs d’exposition étudiés, qu’ils soient fixes ou variables dans le temps, comprennent les caractéristiques sociodémographiques, l’indice de masse corporelle, le risque nutritionnel, la consommation d’alcool, les dangers de l’environnement domiciliaire, la démarche et l’équilibre, et la consommation de médicaments. La quasi-totalité (99,6 %) des usagers présentaient au moins un facteur à haut risque. L’exposition à des risques multiples était répandue, avec une moyenne de 2,7 facteurs à haut risque distincts par participant. Les facteurs statistiquement associés au risque de chutes incluent le sexe masculin, les tranches d’âge inférieures, l’histoire de chutes antérieures, un bas score à l’échelle d’équilibre de Berg, un faible indice de masse corporelle, la consommation de médicaments de type benzodiazépine, le nombre de dangers présents au domicile et le fait de vivre dans une résidence privée pour personnes âgées. Nos résultats révèlent cependant que les méthodes courantes d’analyse des facteurs de risque de chutes – et, dans certains cas, de chutes nécessitant un recours médical – créent des biais appréciables. Les biais pour les mesures d’association considérées proviennent de la manière dont l’exposition et le résultat sont mesurés et définis de même que de la manière dont les méthodes statistiques d’analyse en tiennent compte. Une dernière partie, tout aussi innovante que distincte de par la nature des outils statistiques utilisés, complète l’ouvrage. Nous y identifions des profils d’aînés à risque de devenir des chuteurs récurrents, soit ceux chez qui au moins deux chutes sont survenues dans les six mois suivant leur évaluation initiale. Une analyse par arbre de régression et de classification couplée à une analyse de survie a révélé l’existence de cinq profils distinctifs, dont le risque relatif varie de 0,7 à 5,1. Vivre dans une résidence pour aînés, avoir des antécédents de chutes multiples ou des troubles de l’équilibre et consommer de l’alcool sont les principaux facteurs associés à une probabilité accrue de chuter précocement et de devenir un chuteur récurrent. Qu’il s’agisse d’activité de dépistage des facteurs de risque de chutes ou de la population ciblée, cette thèse s’inscrit dans une perspective de gain de connaissances sur un thème hautement d’actualité en santé publique. Nous encourageons les chercheurs intéressés par l’identification des facteurs de risque de chutes chez les personnes âgées à recourir à la méthode statistique de Wei, Lin et Weissfeld car elle tient compte des expositions variables dans le temps et des événements récurrents. Davantage de recherches seront par ailleurs nécessaires pour déterminer le choix du meilleur test de dépistage pour un facteur de risque donné chez cette clientèle. / Falls in the elderly represent a major problem. It is therefore not surprising that the identification of factors that may increase the risk of falls has received much attention. Frailer seniors who need support to live in the community remained nonetheless poorly documented, although more recently, the Québec authorities have given high priority to interventions that target this population. Risk factors for falls are usually identified by observational prospective studies. Their optimal identification is however complicated by the fact that exposure may vary during the follow-up, and that an individual may experience more than one event. Twenty years ago, some researchers attempted to sensitize their peers in this respect, but their efforts were vain. Researchers continue today to neglect these considerations and to use improper statistical techniques, focusing on the proportion of fallers or the time to first fall. In doing so, we discard a significant amount of relevant information. In this thesis, we review the existing methods and propose a Cox hazards extension. We apply it in the study of potential fall-risk factors associated with 959 community-dwelling seniors using home-care services. Finally, we compare the results of the proposed Wei, Lin, & Weissfeld (WLW) method with those of several other techniques, notably the conventional logistic regression, the pooled logistic regression, the negative binomial regression and the Andersen & Gill regression. At baseline and every six months thereafter, participants were visited at home in order to ascertain information about potential risk factors. Falls were monitored by use of a calendar and monthly phone calls. Baseline exposure variables and updated time-varying exposures include socio-demographic characteristics, BMI, nutritional risk, gait and balance, alcohol consumption, home hazards, and medications. Almost all (99.6%) of participants showed at least one high risk factor. Exposure to multiple risks was frequent, with an average of 2.7 different high-risk factors per participant. The risk factors significantly associated to the risk of falling include male sex, age, history of falling, Berg balance score, BMI, use of benzodiazepines, number of home hazards and residential facility for seniors. Results demonstrate that the usual methods of analyzing risk factors for falling (any sort of fall as well as those leading to medical consultations) are inappropriate, as they produce considerable biases relative to the WLW model using time-dependent covariates. Bias for the considered effect measures comes from the manner in which the observed data (both measured exposures and health outcomes) was measured and defined as well as the way in which the statistical analysis took into account this information. An additional part of the thesis was undertaken to identify risk profiles of subjects regarding the recurrence of falling, defined as participants who reported at least two falls within six months of initial assessment at entry in the study. A classification and regression tree analysis classified the population into five groups differing in risk of recurrent falling, based on history of falls in the three months prior to the initial interview, Berg balance score, type of housing, and usual alcohol consumption in the six months preceding study entry. The relative risks varied from 0.7 to 5.1. A subsequent survival analysis showed that the length of time before becoming a recurrent faller varies among risk profiles. This thesis discusses highly topical subjects about a target population and a fall-risk screening activity which are priorities in the public health sector in Québec. We encourage researchers interested in the identification of risk of falls among the elderly to use the statistical method of Wei, Lin and Weissfeld because it takes into account updated time-varying exposures and multiple events. More research will be necessary to determine the best screening test for a given risk-factor in this setting and population.