Palliative and end-of-life care (PEOLC) involves the use of an interprofessional approach to improve quality of life for patients facing life-threatening illness, and their informal caregivers (e.g. family, other loved ones). Though many patients with life-threatening illness report desires to die at home, people with PEOLC needs continue to die in hospital settings. Given the considerable differences between inpatient and outpatient PEOLC settings, and the potentially increased future need for inpatient PEOLC services, it is critical to explore how patients and caregivers experience and make sense of illness and care in such settings. To contribute to this gap in the literature, I conducted a scoping review on patient and informal caregiver experiences in inpatient specialist palliative care (SPC) settings and semi-structured interviews with patients and caregivers on the Bruyère inpatient SPC unit. I identified three overarching themes from included studies (n=104), including patient and informal caregiver: i) perceptions of care, the interprofessional palliative care team, and the care environment; ii) communication with the interprofessional team; and iii) impacts of illness and care on quality of life. I conducted interviews with three patients and four informal caregivers. Using an inductive thematic analysis approach, I identified three key themes of patient and informal caregiver experiences within the context of the Bruyère inpatient SPC unit: i) the journey of dealing with life-threatening illness; ii) impacts of the COVID-19 pandemic; and iii) attempts to cope and find peace. Based on my findings, improvements are needed to the provision of person-centred care to address patients’ and informal caregivers’ supportive needs. Further work is needed to identify reforms to support improved education and awareness about palliative care to patients, informal caregivers, and the general public.

(in English): The thesis focuses on the quality of life of carers of people with dementia being cared for at home. The theoretical section describes the concept of quality of life in general terms, but also considers carers accounts of their own personal experience. This section then outlines the various stages of dementia and how they impact the quality of life of caregivers. To complete the picture, this is followed by an assessment of care burden but also the various positive aspects arising from caring for dementia patients. By conducting semi-structured interviews, this work aims to investigate how excarers assess and value their experience of caring and whether, either while they were caring or retrospectively, they were aware of any positive aspects of caring for dementia patients and if so, specify what they were and if caregivers found personal meaning in their caregiving experience. Hence, the core area of interest is whether positive aspects of caregiving, finding meaning and cognitive restructuring could form the basis of a successful intervention, which may positively impact quality of life of current caregivers of dementia patients. While excarers mentioned numerous positive aspects associated with caregiving, some also referred to the meaning that they have found through caregiving....

Compte tenu des risques non-négligeables liés à la prise en charge des personnes souffrant de maladie d'Alzheimer sur la santé globale et le bien-être des aidants informels, l'OMS recommande fortement la mise en place d'interventions à leur égard. Bien que les programmes en ligne représentent un outil prometteur pour ces aidants surchargés, peu de recherches ont été menées sur leur conception et leur efficacité. Le but de cette thèse de doctorat était de contribuer à la connaissance et la compréhension des processus du développement et d'évaluation de ces interventions. Pour cela, quarante-neuf participants (12 professionnels de la santé, 6 aidants et 31 personnes âgées) ont participé au processus itératif de conception du programme Diapason centrée sur l'utilisateur. La dernière version a été évaluée dans un essai clinique randomisé, basé sur des méthodes de recherche mixtes. Quarante-neuf aidants informels de personnes atteintes de maladie d'Alzheimer ont été randomisés soit dans le groupe expérimental (n = 25) ou soit dans le groupe de contrôle (n = 24). Bien que les résultats portant sur l'efficacité du programme ne soient pas concluants, les personnes du groupe expérimental ont significativement augmenté leurs niveaux de connaissance de la maladie (p = 0,008 d' = 0,79). Par ailleurs, l'analyse qualitative a montré que les enfants des patients avaient donné un avis plus favorable que les épouses sur l'utilité du programme. Les résultats de ces travaux offrent des perspectives prometteuses pour ce type d'interventions, en particulier quand elles sont personnalisables et centrées sur les besoins des aidants. Ce travail permet de mieux appréhender les spécificités méthodologiques liées au développement et à l'évaluation des interventions des aidants. / Given the important consequences of caregiving on the overall health and wellbeing of informal caregivers, the WHO strongly recommends interventions for them. Although Internet-based programs represent a promising tool for overburdened caregivers, little research has been conducted about their design and efficacy. The purpose of this PhD dissertation was to contribute to the knowledge and understanding of the development, evaluation, and implementation process of these programs. For this purpose, we involved forty-nine participants (12 healthcare professionals, 6 caregivers, and 31 healthy older-adults) in the iterative user-centered design process for the development of the Diapason program. The latest version of this program was evaluated in a randomized clinical trial, based on mixed methods research. Forty-nine informal caregivers of persons with Alzheimer's disease were randomly assigned to the experimental (n=25) or control group (n=24). Although the results were non conclusive about the program's efficacy, the experimental group significantly improved their knowledge of the disease (p=0.008 d=0.79). Furthermore the qualitative analysis showed that children of patients were more positive than female spouses caregivers about the usefulness of the program. The findings of this research offer promising perspectives for this kind of interventions, particularly when individualized and centered on the needs of caregivers. This work allows for the understanding and analysis of specific methodological features to develop and evaluate caregivers' interventions.

Le deuil blanc est peu connu des professionnels de la santé, pourtant cette expérience peut affecter toutes personnes proches aidantes d’une personne vivant avec un trouble neurocognitif. Il consiste en une réponse émotionnelle et physique pouvant survenir lorsque des pertes sont constatées chez la personne vivant avec un trouble cognitif. Les connaissances sur les significations du deuil blanc sont limitées et insuffisantes pour le développement d’interventions efficaces. Le but de l’étude était de comprendre les significations de l’expérience du deuil blanc vécue par des personnes proches aidantes de personnes vivant avec un trouble cognitif et vivant en centre d’hébergement. Dans le cadre d’une phénoménologie descriptive, six personnes proches aidantes ont participé à une entrevue individuelle et celles-ci ont été analysées par la méthode de Giorgi. Les résultats décrivent que les personnes proches aidantes vivent des changements relationnels et des sentiments pénibles provoqués par les changements cognitifs qui progressent. Ceci les amène à ressentir des sentiments ambivalents concernant l’hébergement du proche et demande aux personnes proches aidantes de prendre soin d’eux-mêmes pour poursuivre leur implication. Ces résultats permettront de faciliter la compréhension des professionnels en centre d’hébergement sur le phénomène et d’améliorer la reconnaissance du deuil blanc pour mieux soutenir les personnes proches aidantes. Aussi, les résultats pourront soutenir d’autres études pour identifier des éléments conduisant à des interventions adaptées pour les personnes proches aidantes. / Pre-death grief is not well known to health professionals, yet this experience can affect all care partners of people living with a neurocognitive disorder. It is an emotional and physical response related to the losses observed in the affected person. Knowledge about the meanings of pre-death grief is limited and insufficient for the development of effective interventions. The purpose of this study was to understand the meanings of the pre-death grief experienced by care partners of a cognitively impaired person living in a long-term care home. Using a descriptive phenomenology, six care partners participated in an individual interview, and these were analyzed using Giorgi's method. The results describe that the care partners experience relational changes and distressing feelings caused by the advancing cognitive changes. This leads to ambivalent feelings regarding their relative living in a long-term care home and requires care partners to take care of themselves to continue their involvement. These results will facilitate the understanding of long-term care home professionals' regarding this phenomenon and improve recognition of pre-death grief to better support care partners. Also, the results may support other studies to identify elements leading to adapted interventions for care partners.