{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,21]],"date-time":"2026-07-21T23:03:44Z","timestamp":1784675024899,"version":"3.55.0"},"reference-count":18,"publisher":"Georg Thieme Verlag KG","issue":"06","license":[{"start":{"date-parts":[[2026,7,21]],"date-time":"2026-07-21T00:00:00Z","timestamp":1784592000000},"content-version":"vor","delay-in-days":50,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Arq Neuropsiquiatr"],"published-print":{"date-parts":[[2026,6]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Caring for children with infantile neuroaxonal dystrophy (INAD), a rare and progressive degenerative disease, can compromise mental health and consequently affect the quality of care given; however, there are no studies addressing this issue.<\/jats:p>\n                  <jats:p>To study mental health, focusing on anxiety, depression, hopelessness, quality of life, and sleep patterns among Brazilian caregivers of children with INAD, identifying associations among the variables.<\/jats:p>\n                  <jats:p>We enrolled 20 caregivers of children with INAD in a cross-sectional study using the following self-report questionnaires: State-Trait Anxiety Inventory, Patient Health Questionnaire-9, Beck Hopelessness Inventory, World Health Organization Quality of Life, Pittsburgh Sleep Quality Index, and Epworth Sleepiness Scale. We calculated the prevalence of psychological symptoms, and for the analyses of correlations among anxiety, depression, hopelessness, life quality, sleep quality, sociodemographic, and INAD symptoms, a Pearson's correlation test was applied.<\/jats:p>\n                  <jats:p>Caregivers exhibited high levels of mental distress: 95% were depressed, 75% anxious, and all reported some degree of hopelessness. The quality-of-life scores were lowest in the psychological domain, and poor sleep quality was predominant. The correlation analysis uncovered that onset of physical decline in children appeared to be the most pervasive factor associated with mental suffering within our sample.<\/jats:p>\n                  <jats:p>Providing care for children with INAD is associated with severe psychological challenges, particularly in the early stages of the disease. These findings highlight the importance of early psychological screening and structured psychosocial interventions to support caregiver's wellbeing and enhance caregiving capacity<\/jats:p>","DOI":"10.1055\/s-0046-1825515","type":"journal-article","created":{"date-parts":[[2026,7,21]],"date-time":"2026-07-21T22:53:27Z","timestamp":1784674407000},"page":"001-005","source":"Crossref","is-referenced-by-count":0,"title":["Psychological impact of being a caregiver to children with infantile neuroaxonal dystrophy"],"prefix":"10.1055","volume":"84","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1619-9179","authenticated-orcid":false,"given":"Danilo Assis","family":"Pereira","sequence":"additional","affiliation":[{"name":"Pontif\u00edcia Universidade Cat\u00f3lica de S\u00e3o Paulo, Faculdade de Ci\u00eancias M\u00e9dicas e da Sa\u00fade, Departamento de Reprodu\u00e7\u00e3o Humana e da Inf\u00e2ncia, Sorocaba SP, Brazil."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-1027-1971","authenticated-orcid":false,"given":"Fl\u00e1via Mariana Borges Montalv\u00e3o","family":"Marques","sequence":"additional","affiliation":[{"name":"Pontif\u00edcia Universidade Cat\u00f3lica de S\u00e3o Paulo, Faculdade de Ci\u00eancias M\u00e9dicas e da Sa\u00fade, Departamento de Reprodu\u00e7\u00e3o Humana e da Inf\u00e2ncia, Sorocaba SP, Brazil."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-6233-6884","authenticated-orcid":false,"given":"Isabella","family":"Allegretti","sequence":"additional","affiliation":[{"name":"Pontif\u00edcia Universidade Cat\u00f3lica de S\u00e3o Paulo, Faculdade de Ci\u00eancias M\u00e9dicas e da Sa\u00fade, Departamento de Reprodu\u00e7\u00e3o Humana e da Inf\u00e2ncia, Sorocaba SP, Brazil."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2540-1615","authenticated-orcid":false,"given":"Elaine","family":"Henna","sequence":"additional","affiliation":[{"name":"Pontif\u00edcia Universidade Cat\u00f3lica de S\u00e3o Paulo, Faculdade de Ci\u00eancias M\u00e9dicas e da Sa\u00fade, Departamento de Sa\u00fade Mental, Sorocaba SP, Brazil."}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"194","published-online":{"date-parts":[[2026,7,21]]},"reference":[{"issue":"08","key":"ref1","doi-asserted-by":"publisher","first-page":"3309","DOI":"10.4103\/jfmpc.jfmpc_28_24","article-title":"Burden of depression and anxiety among caregivers of children having structural epilepsy","volume":"13","author":"K Pahwa","year":"2024","journal-title":"J Family Med Prim Care"},{"issue":"05","key":"ref2","doi-asserted-by":"publisher","first-page":"2460","DOI":"10.3390\/ijerph18052460","article-title":"Psychological distress among caregivers of children with neurodevelopmental disorders in Nepal","volume":"18","author":"H K Maridal","year":"2021","journal-title":"Int J Environ Res Public Health"},{"issue":"09","key":"ref3","doi-asserted-by":"publisher","first-page":"815","DOI":"10.1111\/j.1469-8749.2011.04014.x","article-title":"Parenting stress and children with cerebral palsy: a European cross-sectional survey","volume":"53","author":"J Parkes","year":"2011","journal-title":"Dev Med Child Neurol"},{"issue":"01","key":"ref4","doi-asserted-by":"publisher","first-page":"109","DOI":"10.1186\/s13023-020-01355-2","article-title":"The natural history of infantile neuroaxonal dystrophy","volume":"15","author":"F D Altuame","year":"2020","journal-title":"Orphanet J Rare Dis"},{"issue":"04","key":"ref5","doi-asserted-by":"publisher","first-page":"766","DOI":"10.1007\/s10862-021-09888-x","article-title":"Who looks on the bright side? 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