Banca de DEFESA: VITOR SIQUEIRA DE MORAES MESQUITA

Uma banca de DEFESA de DOUTORADO foi cadastrada pelo programa.
STUDENT : VITOR SIQUEIRA DE MORAES MESQUITA
DATE: 26/02/2026
TIME: 09:00
LOCAL: Plataforma online
TITLE:

The challenges of neurodegenerative disease and doctor-family communication from the perspective of relatives of people with Alzheimer's or Parkinson's disease.

 

KEY WORDS:

Family members, Neurodegenerative diseases, Health communication.

PAGES: 128
BIG AREA: Ciências Humanas
AREA: Psicologia
SUMMARY:

The onset of neurodegenerative diseases in a family member, such as Alzheimer's or Parkinson's disease, often leads to changes in family dynamics, requiring the accompaniment of the sick relative to medical appointments and hospitalizations, occasions where good communication with healthcare professionals is essential. In this context, communicating bad news is a complex and emotionally impactful process. Although it is a recurring practice in medical work, this task is generally marked by insecurity and emotional disorganization for both patients and families. This predominantly qualitative research aimed to investigate the perspective of family members regarding the repercussions of neurodegenerative diseases on doctor-family communication and intrafamily relationships. Fourteen family members collaborated in the investigation process, most of whom were daughters of elderly people with Alzheimer's or Parkinson's disease. They completed a sociodemographic questionnaire and participated in a semi-structured interview, and the data were subjected to Bardin's Content Analysis. The thesis is structured as a collection of articles. The first article is a narrative literature review addressing the challenges faced by medical professionals in communicating bad news. In this context, it highlights the importance of humanized, empathetic, and patient- and family-centered communication that fosters a therapeutic bond, active family participation, and shared decision-making. Structured protocols, such as SPIKES, QCCM, P-A-C-I-E-N-T-E, and V.AL.U.E., emerge as relevant tools to guide professionals in this process, without disregarding the uniqueness of each context. The second article describes the perspective of family members participating in the research on the challenges related to delivering bad news in the medical care of their relatives, identifying their conceptions about more and less appropriate ways for professionals to convey this type of news. Faced with bad news, family members indicated that objectivity, sincerity, and sensitivity in communication, as well as attentive and attentive listening to the family, were desirable. On the other hand, they viewed the insensitivity in announcing the bad news and the lack of subsequent support as inadequate. The third article reports on the impacts of neurodegenerative disease on family dynamics from the perspective of the family members themselves. Interviewees expressed shock at the realization of the irreversibility of the disease and, due to the progressive worsening of the family member's clinical condition, showed grief in the face of resulting losses, changes in routine and future plans, risks to the physical and mental health of caregivers, and challenges in communication and caregiving. The study reinforces the urgency of providing attention to the families of people with neurodegenerative diseases, seeking ethical, comprehensive care that is sensitive to the practical and emotional needs of these family members.

COMMITTEE MEMBERS:
Presidente - 2077610 - LILIAN MARIA BORGES
Interna - 1893672 - LUCIENE DE FATIMA ROCINHOLI
Externa à Instituição - ADRIANA VASCONCELOS DA SILVA BERNARDINO - UV
Externa à Instituição - MAYLA COSMO MONTEIRO - PUC - RJ
Externa à Instituição - VIRGINIA NUNES TURRA - UnB