Caregivers of individuals with cancer in the COVID-19 pandemic are faced with the demands of cancer and the health needs produced by it, along with their own health and self-care needs, and the uncertainties of expectations and risks. A qualitative analytical phenomenological study with caregivers of individuals with cancer registered at the state referral hospital supplying medications, who answered the sociodemographic assessment questionnaires and semi-structured questions about their feelings and perceptions in the COVID-19 pandemic. Bardin’s content analysis was used, with methodological quality assessed using SRQR Standards for Reporting Qualitative Research and the MAXQDA software. Most of the caregivers are women, married, Catholic, of low income and education, aged between 30 and 60 years, optimistic, comply with health guidelines regarding social distancing, use of masks, and routine hand hygiene, do not practice regular physical activities, mention concern for their own physical and financial survival, and that of their family. The main need identified in the affective sphere was to reframe contact with family members, seeking to strengthen the bonds of affection. The feeling of emotional vulnerability shows the importance of building effective public policies for social support consistent with the improvement of health care for this population.
Trata-se de Revisão Integrativa da literatura sobre a qualidade de vida de cuidadores de pacientes com deficiência motora. Os estudos foram identificados por meio de busca eletrônica no banco de dados da Medline, Lilacs, Scielo e Medline/Pubmed, LILACS, e busca manual de resumos de trabalhos apresentados em congressos entre janeiro de 1995 a dezembro de 2017, utilizando-se os descritores "qualidade de vida and cuidador and deficiência motora"; "qualidade de vida and cuidador and hemiplegia"; "qualidade de vida and cuidador and paraplegia"; "qualidade de vida and cuidador and tetraplegia". Foram identificados 233 trabalhos. Destes, 224 foram excluídos por não se enquadrarem nos critérios de elegibilidade, 9 estudos foram incluídos. A publicação mais antiga foi em 2004 e a mais recente em 2015. Para avaliar a qualidade de vida os autores dos artigos utilizaram: SF-36-Medical Outcomes Study Short Form 36, WHOQOL-bref-World Health Organization Quality of Life Group Bref, MQOL-McGill Quality of Life Questionarie. A análise dos artigos identificou que 4 correlacionaram a QV de pacientes com a QV dos cuidadores e 5 artigos estudaram especificamente a QV dos cuidadores. Identificou também que a Qualidade de vida do cuidador está relacionada com a do paciente. Evidenciou-se outrossim, que os cuidadores são afetados de forma negativa pelo próprio despreparo em lidar com o paciente com deficiência motora e, aliado a isso, tem-se a limitação financeira dos familiares, a mudança na dinâmica social repentina. Entretanto, são necessários estudos futuros com maior abrangência e maior rigor metodológico.
Background Parents can be psychologically impacted when their children are diagnosed with eye diseases, such as blindness, strabismus, and eye cancer. Stress can reduce the quality of parental care and may be linked to the deterioration of parents’ and children’s mental and physical health and family dynamics. No systematic literature review on parental stress in ophthalmology has been found to provide evidence synthesis capable of stimulating and defining new studies and thereby promoting research in this field. To address this important gap, the present review aims to synthesize evidence about approaches, methods, instruments, and results from research regarding ophthalmology-related parental stress. Methods Primary epidemiological observational studies should be original in addressing parental stress caused by ophthalmological health conditions in children. They should present the characteristics of the study population and the clinical and ophthalmic characterizations of children. MEDLINE (via Ovid), EMBASE, PsycINFO, Google Scholar, and gray literature (PsycEXTRA, NTIS, and OpenSINGLE) will be searched. Controlled vocabulary, Boolean operators, and defined search strategies will be used. There will be no restrictions on the studies’ publication language, which will be selected in two screening stages. Two reviewers will independently retrieve full-text studies, assess methodological quality, and extract data. Data available through December 2021 will be considered for inclusion. Discussion The socioeconomic characterization of the participants, the identification of which ophthalmological diseases have been studied in relation to parental stress, and the knowledge of each instrument and methodology peculiarities potentially contribute to this study. The results may promote the development or enhancement of public policies focused on this specific theme, thereby providing the means for potential improvement of the physical and mental health of parents and children with eye diseases. Systematic review registration PROSPERO CRD42018094972
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