Resiliência e adaptação familiar e individual numa população com doença rara

: um estudo qualitativo

Abstract

Health conditions such as chronic illness present a context rife with adversity, both for the patient himself and for those around him. It is a context where suffering and anguish are present, accompanied by high levels of stress and anxiety, thus becoming an environment where people live in permanent discouragement. In this sense, it is up to research, in this scientific area, to provide methodologies and intervention programs that counteract this way of facing the disease, to guarantee that all those who deal with it, directly or indirectly, can manage to sustain healthy levels of well-being and adapt favourably to the disease. This qualitative and exploratory study aims to examine the family and individual dynamics associated with the resilience of individuals with rare diseases and their relatives, the main strengths of patients with rare diseases and their families, the coping strategies of individuals with rare diseases and their family members, and also, to understand how the resilience, strengths and coping strategies of individuals with rare disease and their families promote adjustment to the disease. Considering the objectives described, this master's dissertation covers as a research proposal to answer the following question: “How can resilience, strengths and coping strategies contribute to individual and family adaptation to a rare disease?”. The sample consists of a segment of Portuguese with rare disease, in this case 16 participants. The data collection method was verified through semi-structured interviews, proceeding to the thematic analysis of the data through the MASQDA 2022 program. Regarding the results obtained, they were quite varied and complex to interpret, considering the overlapping of some concepts. However, it has been shown that the external and internal factors of the person with the disease have a high impact on how he adapts to his medical condition and that of his family members. In this sense, as the main conclusions of the present study, it is possible to infer that family unity as well as support are strong facilitators for the adaptation to the disease, along with the strengths of each relative and the coping strategies put into practice, considering the needs and resources of the people involved in the context of the disease.

Date of Award	15 Nov 2022
Original language	Portuguese
Awarding Institution	Universidade Católica Portuguesa
Supervisor	Marta Pedro (Supervisor)