Passing through end-of-life suffering: Possible or not? Results from a qualitative inquiry.

The objective of this study was to understand the factors associated with "passing through suffering" in terminal illness. We interviewed 19 adults diagnosed with terminal disease in palliative stage. Interviews were analyzed using thematic analysis. Four axes of understanding were generated. In the first, participants discussed the will to "feel alive" despite the disease. The second, the process of acceptance, is based on lucidity and on letting go. The third highlights the importance of relationships with others. The fourth axis describes the consequences of this passage through suffering. This study highlights a phenomenon of adapting to suffering.

Inclusion of informal caregivers in the palliative and end-of-life care of older adults: a scoping review protocol.

INTRODUCTION: Palliative and end-of-life (EOL) care will increasingly be required in years to come as a result of an ageing population. An important component of this type of care is the inclusion of informal caregivers, who are family members or friends offering unpaid assistance to older adults with a terminal illness. Although systematic reviews were conducted on topics related to the inclusion of informal caregivers in the palliative and EOL care of older adults, several gaps remain as they were specific to a health condition and/or setting. The purpose of our scoping review is to map the extent of knowledge on this subject. METHODS AND ANALYSIS: We will conduct our scoping review following Levac's methodology. We will gather publications of various types through nine databases, manual searches in journals and search engines and reference lists. The selection process will be conducted by two independent reviewers and consist of screening by title and abstract, followed by reading the full text to confirm eligibility. An independent reviewer will then extract data and assess quality from included publications. Data extracted from different publication types will be synthesised together in the Excel software using a content analysis method, with quantitative data transformed into a qualitative description. Results will be presented through descriptive statistics and themes. During different steps of the review, we will also consult informal caregivers and health professionals for feedback as stakeholders. ETHICS AND DISSEMINATION: The conduction of this scoping review requires no ethical approval. Results will provide an overview of the state of knowledge on the inclusion of informal caregivers in palliative and EOL of older adults, which could help guide clinical practice, the development of interventions and policy and further research. We will disseminate these results by publishing an article, presenting in conferences, and discussing findings with stakeholders.

Non-somatic Suffering in Palliative Care: A Qualitative Study on Patients' Perspectives.

Objectives: Suffering is intimately linked to the experience of illness, and its relief is a mandate of medicine. Advances in knowledge around terminal illness have enabled better management of the somatic dimension. Nevertheless, there is what can be called "non-somatic" suffering which in some cases may take precedence. Inspired by Paul Ricoeur's thinking on human suffering, our aim in this qualitative study was to better understand the experience of non-somatic suffering. Methods: Semi-structured interviews were conducted with 19 patients. The results were qualitatively analyzed following a continuous comparative analysis approach inspired by grounded theory. Results: Three key themes synthesize the phenomenon: "the being enduring the suffering", "the being whose agency is constrained", and "the being in relationship with others." The first describes what patients endure, the shock and fears associated with their own finitude, and the limits of what can be tolerated. The second refers to the experience of being restricted and of mourning the loss of their capacity to act. The last describes a residual suffering related to their interactions with others, that of loneliness and of abandoning their loved ones, two dimensions that persist even when they have accepted their own death. Conclusions: Non-somatic suffering can be multifarious, even when minimized by the patient. When evaluating suffering, we must keep in mind that patients can reach a "breaking point" that signals the state of unbearable suffering. In managing it, we probably need to make more room for family and friends, as well as a posture of caring based more on presence and listening.

A mixed-method randomized feasibility trial evaluating progressive muscle relaxation or autogenic training on depressive symptoms and quality of life in people living with human immunodeficiency virus (HIV) who have depressive symptoms.

BACKGROUND: Progressive muscle relaxation (PMR) and autogenic training (AT) are effective relaxation techniques to reduce depressive symptoms. However, no studies on their effectiveness have been conducted among people living with HIV and depressive symptoms. The primary aim of this pilot study was to assess the feasibility and acceptability of PMR and AT interventions among people living with HIV who have depressive symptoms. A secondary aim was to assess the potential effectiveness of these interventions on depressive symptoms and quality of life. METHODS: This study was a three-arm pilot randomized control trial with mixed methods. Participants were randomized to PMR, AT, or a control group (CG), with four assessments (baseline, and at one, three, and six months). The PMR and AT interventions consisted of six 1 h sessions of individual training over 12 weeks, plus home practice. Recruitment, attrition, and completion rates were calculated. Depressive symptoms and quality of life were assessed at all times. Participants' perceptions of the interventions were collected in semi-structured interviews. RESULTS: Following the screening, 54/63 people met the inclusion criteria, and 42/54 were randomly allocated to the PMR group (n=14), AT group (n=14), and CG (n=14). Six participants (43%; 95% CI 18-71%) in the PMR group and 10 (71%; 95% CI 42-92%) in the AT group completed the intervention. Participants reported better emotion management and improvements in depressive symptoms and quality of life. CONCLUSIONS: The pilot study suggests that a randomized trial to test the effectiveness of these interventions is feasible. TRIAL REGISTRATION: ClinicalTrials.gov NCT01901016.

Introduction of a palliative approach in the care trajectory among people living with advanced MS: perceptions of home-based health professionals.

BACKGROUND: Even with the desire of home-based health professionals to provide supportive care, the palliative needs of people living with multiple sclerosis (MS) remain unmet. AIM: To describe the perceptions of home-based health professionals concerning the introduction of a palliative care approach in the care trajectory of people living with advanced MS. METHOD: Based on an exploratory qualitative design, focus groups and individual interviews were conducted with nurses, occupational therapists and social workers (n=13 professionals). RESULTS: A palliative care approach was described as a possibility for opening the discussion between the patient and their caregivers about their needs and desires at the end of life. The approach required professionals to be supportive and to adapt their interventions to people living with MS. However, professionals reported difficulties in introducing a palliative care approach. CONCLUSION: Health professionals reported that they feel a palliative care approach for people living with MS is mandatory; however, they do not feel comfortable integrating it systematically into their care.