O impacto do transtorno neurocognitivo na família

: instrumento de avaliação

Abstract

Introduction: The onset of a neurodegenerative, chronic and disabling disease implies profound changes in the family dynamics, with increased demands for the provision of supportive care to the family and to the person with Neurocognitive Disorder (NCD). The family is the leading resource of the person who becomes ill and its members take on the role of family caregivers. The repercussions on the family come at different levels: physical, psychological, social, economic, and in their relational dynamics. The patient's autonomy is compromised, which becomes clear in the decreased quality of life of the household members and the need to restructure family roles. The reorganization of health care has led to an increase of care under the responsibility of the family, increasing the burden on the different members, particularly in situations of health improvement and/or disease treatment. With the challenges of family readjustment brought forward by the onset of NCD, nurses must expand their knowledge about the implications of this onset of NCD in the different members of the household, contributing to identify their needs and to the development of an evidence-based practice. General objective: To build and validate a tool that would assess the impact on household members brought by the onset of NCD in a member of the household. Methodology: The study was carried out in three stages: Literature review; Delphi study and application of the tool to a convenience sampling of 262 relatives of people who live with the person suffering from NCD on a daily basis. Results: The scoping review showed that the care provided to people with dementia is ensured by informal caregivers, most of whom are women, particularly wives, daughters and daughters-in-law. The impact resulting from the onset of this disease has been widely studied, with a focus on caregiving positive and negative repercussions. In this Delphi study, of the 86 items submitted to expert consensus, adaptations were suggested in 10 items, in order to make them clearer and more understandable. The final version was composed of 68 items. The results allowed us to find, among experts, a consensus that allowed us to validate the content of a proposed tool to assess the impact of neurocognitive disorder on the family. The tool was tested on a total sample of 262 participants: 104 primary caregivers with a mean age of 60 years (SD= 13.7) and 158 family members who cohabit daily with the person with NCD with a mean age of 49.94 years (SD= 13.72). After the factor analysis, the tool was composed of 30 items divided into 4 dimensions: Emotional Dimension, Economic Dimension, Family Relations Dimension and Support-seeking Dimension with an explained variance of 54.96%. The 0.899 calculated Cronbach's alpha coefficient allows us to state that the tool has a sound internal consistency. Conclusion: It is not just about the informal caregiver, the remaining family also have a special interest in their members' well-being, health and disease, making it important to involve them as an integral part of Nursing care research and practice. The tool has great internal consistency and, from the point of view of the conception of the phenomenon under study, it is thereby grouped into four dimensions, all of which are closely related to the family's adaptation to the onset of the neurocognitive disorder in one of its members.

Date of Award	8 May 2024
Original language	Portuguese
Awarding Institution	Universidade Católica Portuguesa
Supervisor	Luís Sá (Supervisor)