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Evaluation of quality of life, sleep and psychosocial factors in caregivers of individuals with Down Syndrome.


There is a need that is increasingly discussed in the scientific environment to shift the focus of attention from the disease to the person. The humanization of care and health care led to the triad disease / patient / caregiver. This caregiver can be both a professional and one who stays at home taking care of your loved ones, often compromising your own health.


This study aimed to evaluate through questionnaires the quality of life, quality of sleep, and symptoms of depression, anxiety and stress in caregivers of individuals with Down Syndrome.


Nineteen caregivers (19) of individuals with Down Syndrome (DS) participated in this study. Inclusion criteria were fluency in the Portuguese language to answer the following validated questionnaires: Quality of Life Questionnaire (SF-36), Sleep Quality Index of Pittsburgh (PSQI) and Depression, Anxiety and Stress Scale (EADS-21). In addition to the questionnaires, the participants answered the following questions: age, marital status, gender, kinship and period devoted to caring for the relative with DS, working time, presence of the following factors that could influence sleep quality: caffeine drink consumption after 18h, tobacco use, physical exercise after 20h and use of medications. This research is linked to a main project that received FAPES research assistance and approval by CEPH ICT - UNESP (CAAE: 64173616.4.0000.0077).


The caregivers had a mean age of 54.5710.43, with a minimum of 27 and a maximum of 75 years. The sample consists mainly of married individuals (63.15%), female (78.94%), who are fully dedicated to the care of relatives with DS (47.36%). The SF-36 showed that the domains vitality, general health and pain were the ones with the lowest averages, 46.7822.50; 51.3619.12 and 52.4233.03, respectively. The PSQI showed that 62.15% of caregivers have poor sleep quality and 31.37% some sleep disorder. In the EADS-21 the average stress, anxiety and depression scales were 7.266.20; 4.85.24 and 4.525.32, respectively.


The evaluations made evident some important aspects about the physical and emotional health of caregivers of individuals with Down Syndrome, making their health care essential. The data obtained in this research will allow us to establish the diagnosis of the pathologies studied and the indication of individualized therapies, envisaging new studies.


Quality of life, Sleep quality, Down Syndrome.


Área Clínica


Tatiana Goldsmid Galvão Prota Rezende, MARIGNÊS THEOTONIO Dutra, Lilian Chrystiane Giannasi , Mônica Fernandes Gomes, Wagner Oliveira, Tainá Alves Oliveira, Sigmar Mello Rode