What does it mean to be the main caregiver to a terminally ill family member in Lithuania?: A qualitative study.

INTRODUCTION: Family caregivers are a great resource for providing dignified end-of-life care for terminally ill patients. Framed from the perspective of role theory and the relational nature of providing and receiving care, study objectives were as follows: (1) to capture caregivers' understanding of the process of taking on the role of main caregiver, (2) to conceptualize their understanding of the functions that they assume while being the main caregivers, and (3) to understand how they experienced the consequences they confronted. METHODS: The research team employed the methodological strategy of descriptive thematic analysis using a semi-structured interview guide. The sample consisting of 33 family caregivers was recruited using purposeful and snowball sampling strategies in 2020. Interview data was analyzed using content-driven inductive thematic analysis. RESULTS: The data analysis revealed four main themes that structure the process of becoming the main care giver of a terminally ill family member and the meaning of the caregiver role: (1) inaccessibility and mistrust of public care services for persons with terminal illness, (2) moral obligations and responsibilities of immediate family and friends, (3) cultural traditions, (4) the caregiver feels responsible for everything. The themes describe the social role of family caregiver in social context, address the process of taking on the role of caregiver and living with systemic corruption. CONCLUSIONS: Recognition of caregiving experiences is essential in planning better systems, in direct practice and in confronting corruption. The study suggests the need for open communication, accessibility of quality services, and the recognition of caregivers as care-team members. The larger implication is that the increasing numbers of distressed caregivers and aging populations can be considered as public health populations, and thus addressable through public health methods.

Dignity Violations and Barriers to Dignity Assurance for Terminally Ill Patients at the End of Life: A Cross-Sectional Analysis.

Background and Objectives: Investigation into forms of behavior that violate dignity is not the typical way to look for means of dignity preservation, but it may be the optimal way to prevent improper behavior. Numerous studies document that maintaining and improving patient dignity at the end of life require an understanding of factors posing threats to dignity in health care organizations. This study aimed to assess associations between dignity-violating behaviors and barriers to the assurance of dignity in health care settings from the perspective of health professionals. Materials and Methods: An anonymous survey of health professionals was conducted in Lithuania in May 2021 by using a convenience sampling method (N = 168). Two scales were developed and included in the questionnaire. One scale measured respondents' perceptions of Dignity Violations that they had witnessed. The other scale measured their opinions about Barriers to Dignity Assurance of terminally ill patients in clinical settings. Data analysis began with descriptive statistics, followed by exploratory principal component analysis (PCA) to identify the underlying structure of each scale. The variables assigned to distinct components in the PCA were combined into reflective latent variables in a path model. The path model of the relationships between the latent constructs was tested for significant links by implementing the partial least squares structural equation modeling technique. Results: Dehumanization, Humiliation, Inattentiveness, Control, Demonization, and Manipulation were identified as major forms of dignity-violating behavior. In addition, Organizational Barriers and Patient as an Obstacle were identified as two major types of barriers to the assurance of patient dignity. Both organizational and patient-oriented barriers were directly or indirectly associated with all forms of violations of patient dignity. Conclusions: The Dignity Violations scale showed potential for estimating professionals' observations of dignity violations in health care settings. Perceived high workloads, staff shortages, insufficient resources, and lack of organizational support were identified as negative organizational factors that may result in increased risk of seeing patients as obstacles to providing care that preserves the dignity of terminally ill patients.