{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,6]],"date-time":"2026-07-06T03:12:40Z","timestamp":1783307560560,"version":"3.54.6"},"reference-count":39,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2021,9,13]],"date-time":"2021-09-13T00:00:00Z","timestamp":1631491200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Psychol."],"abstract":"<jats:p>Grandparents who have grandchildren with disabilities are an underrepresented group in existing research related to the field. This qualitative phenomenological study\u2019s general purpose is to analyze, from a personal perspective, the situations and needs of grandparents who have grandchildren with Down syndrome. The participants\u2019 ages range from 65 to 85, and the ages of their grandchildren with Down syndrome range from 3 to 21 years. All participants had one grandchild with a disability, except for two, who each had two. A sociodemographic questionnaire was administered, and individual interviews were conducted, using open questions, through phone and\/or video calls. An analysis of the participants\u2019 speech was carried out, which implied the development of a system of meta-categories and categories. This analysis was developed manually, given the COVID-19 environment. The results indicate a substantial change from negative feelings caused by the knowledge of the diagnosis to feelings related to positive experiences expressed currently. The participants see themselves as a fundamental source of support (informal, instrumental, practical, social, emotional, and economic) for their families and, mainly, for their grandchildren with Down syndrome. A need for information and training was observed when the grandparents talked about first being informed of the diagnosis and their concerns about the future of these grandchildren and their siblings. They made social demands, such as greater government involvement or more significant opportunities to access resources and rights for their grandchildren. The results are discussed, as are possible future research directions.<\/jats:p>","DOI":"10.3389\/fpsyg.2021.661205","type":"journal-article","created":{"date-parts":[[2021,9,13]],"date-time":"2021-09-13T05:40:37Z","timestamp":1631511637000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":6,"title":["Nurturing Grandchildren With Down Syndrome: A Qualitative Study on Grandparents\u2019 Needs Using Digital Tools\u2020"],"prefix":"10.3389","volume":"12","author":[{"given":"Mar\u00eda C.","family":"S\u00e1nchez G\u00f3mez","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roc\u00edo","family":"Mart\u00edn-Sevillano","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mar\u00eda V.","family":"Mart\u00edn-Cilleros","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. J. Mena","family":"Marcos","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francisco J.","family":"Garc\u00eda-Pe\u00f1alvo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2021,9,13]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","first-page":"361","DOI":"10.1111\/j.1365-2788.2010.01381.x","article-title":"\u2018We\u2019ve been through it all together\u2019: supports for parents with children with rare trisomy conditions.","volume":"55","author":"Bruns","year":"2011","journal-title":"J. Intellect. Disabil. Res."},{"key":"B2","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph18073422","article-title":"The Integration of psychosocial care into national dementia strategies across Europe: evidence from the skills in Dementia Care (SiDECar) Project.","volume":"18","author":"Chirico","year":"2021","journal-title":"Int. J. Environ. Res. Public Health"},{"key":"B3","doi-asserted-by":"crossref","first-page":"2365","DOI":"10.1590\/1413-81232015218.04182016","article-title":"Qualitative analysis of topics related to the quality of life of people with disabilities.","volume":"21","author":"Cilleros","year":"2016","journal-title":"Cien. Saude Colet."},{"key":"B4","doi-asserted-by":"publisher","first-page":"465","DOI":"10.1177\/1359104598033009","article-title":"Grandparenting and its relationship to parenting.","volume":"3","author":"Drew","year":"1998","journal-title":"Clin. Child Psychol. Psychiatry"},{"key":"B5","doi-asserted-by":"publisher","first-page":"81","DOI":"10.14201\/scero20174828198","article-title":"Percepciones parentales sobre el impacto del s\u00edndrome de Down en la familia.","volume":"48","author":"Fern\u00e1ndez","year":"2017","journal-title":"Siglo Cero"},{"key":"B6","first-page":"28","article-title":"Conducta dirigida hacia un objetivo como blanco de la atenci\u00f3n temprana en el s\u00edndrome de Down.","volume":"29","author":"Fidler","year":"2012","journal-title":"Rev. S\u00edndrome Down"},{"key":"B7","doi-asserted-by":"publisher","first-page":"32","DOI":"10.1352\/1934-9556-52.1.32","article-title":"The experience of stress and personal growth among grandparents of children with and without intellectual disability.","volume":"52","author":"Findler","year":"2014","journal-title":"Intellect. Dev. Disabil."},{"key":"B8","doi-asserted-by":"publisher","first-page":"56","DOI":"10.1177\/0271121409360826","article-title":"Perceived needs of grandmothers of children with disabilities.","volume":"30","author":"Gallagher","year":"2010","journal-title":"Top. Early Childh. Spec. Educ."},{"key":"B9","doi-asserted-by":"publisher","DOI":"10.14201\/eks.23013","article-title":"Online assessment in higher education in the time of COVID-19.","volume":"21","author":"Garc\u00eda-Pe\u00f1alvo","year":"2020","journal-title":"Educ. Knowl. Soc."},{"key":"B10","doi-asserted-by":"publisher","first-page":"1","DOI":"10.4018\/978-1-7998-4156-2.ch001","article-title":"Impact of the COVID-19 on higher education: an experience-based approach","author":"Garc\u00eda-Pe\u00f1alvo","year":"2021","journal-title":"Information Technology Trends for a Global and Interdisciplinary Research Community"},{"key":"B11","doi-asserted-by":"publisher","first-page":"305","DOI":"10.2190\/L60R-MF1N-98AV-TMV3","article-title":"Panamanian grandmothers\u2019 family relationships and adjustment to having a grandchild with a disability.","volume":"59","author":"Gardner","year":"2004","journal-title":"Int. J. Aging Hum. Dev."},{"key":"B12","doi-asserted-by":"publisher","first-page":"97","DOI":"10.1046\/j.1360","article-title":"Grandparent support for families of children with Down\u2019s syndrome.","volume":"15","author":"Hastings","year":"2002","journal-title":"J. Appl. Res. Intellect. Disabil."},{"key":"B13","doi-asserted-by":"publisher","first-page":"23","DOI":"10.1300\/J083v33n04_03","article-title":"Grandparents as supports to mothers of persons with intellectual disability.","volume":"33","author":"Heller","year":"2000","journal-title":"J. Gerontol. Soc. Work"},{"key":"B14","first-page":"17","article-title":"Familias de las personas con s\u00edndrome de Down: perspectivas, hallazgos, investigaci\u00f3n y necesidades.","volume":"25","author":"Hodapp","year":"2008","journal-title":"Rev. S\u00edndrome Down"},{"key":"B15","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1177\/1053815114542506","article-title":"Grandmothers raising grandchildren with disabilities: sources of support and family quality of life.","volume":"36","author":"Kresak","year":"2014","journal-title":"J. Early Interv."},{"key":"B16","doi-asserted-by":"publisher","first-page":"467","DOI":"10.1080\/03601270903212419","article-title":"Grandparents\u2019 involvement and support in families with children with disabilities.","volume":"36","author":"Lee","year":"2010","journal-title":"Educ. Gerontol."},{"key":"B17","doi-asserted-by":"publisher","first-page":"365","DOI":"10.1007\/s10897-011-9360-2","article-title":"Extended family impact of genetic testing: the experiences of X-linked carrier grandmothers.","volume":"20","author":"Lehmann","year":"2011","journal-title":"J. Genet. Couns."},{"key":"B18","author":"Lincoln","year":"1985","journal-title":"Naturalistic Inquiry."},{"key":"B19","first-page":"46","article-title":"El papel de los padres de ni\u00f1os con s\u00edndrome de Down y otras discapacidades en la atenci\u00f3n temprana.","volume":"29","author":"Mahoney","year":"2012","journal-title":"Rev. S\u00edndrome Down"},{"key":"B20","first-page":"46","article-title":"Evoluci\u00f3n del proceso de Atenci\u00f3n Temprana a partir de la triada profesional-familia-ni\u00f1o.","volume":"97","author":"Mart\u00ednez","year":"2008","journal-title":"Rev. S\u00edndrome Down"},{"key":"B21","doi-asserted-by":"publisher","first-page":"102","DOI":"10.1111\/j.1365-2788.2011.01403.x","article-title":"Impact of disability on families: grandparents\u2019 perspectives.","volume":"56","author":"Miller","year":"2012","journal-title":"J. Intellect. Disabil. Res."},{"key":"B22","first-page":"169","article-title":"Perfil sociodemogr\u00e1fico, carga percibida y calidad de vida en abuelos cuidadores de ni\u00f1os con discapacidad.","volume":"25","author":"Mu\u00f1oz","year":"2015","journal-title":"Psicol. Salud"},{"key":"B23","doi-asserted-by":"publisher","first-page":"93","DOI":"10.1037\/h0100425","article-title":"Families of children with disabilities: a review of literature and recommendations for interventions.","volume":"5","author":"Neely-Barnes","year":"2008","journal-title":"J. Early Intensive Behav. Interv."},{"key":"B24","article-title":"\u201cApoyando a los Abuelos, Nuestros Grandes Aliados\u201d Gu\u00eda de Abuelos de Nietos con Discapacidad.","author":"Orgaz","year":"2009"},{"key":"B25","doi-asserted-by":"publisher","first-page":"149","DOI":"10.1002\/imhj.10047","article-title":"An attachment perspective on grandparents raising their very young grandchildren: implications for intervention and research.","volume":"24","author":"Poehlmann","year":"2003","journal-title":"Infant Ment. Health J."},{"key":"B26","author":"Ponce","year":"2012","journal-title":"Talleres de Abuelos. C\u00f3mo Organizar Talleres para Abuelos de Ni\u00f1os."},{"key":"B27","first-page":"5","article-title":"Introducci\u00f3n a la metodolog\u00eda de investigaci\u00f3n cualitativa.","volume":"14","author":"Quecedo","year":"2002","journal-title":"Rev. Psicodid\u00e1ct."},{"key":"B28","author":"Sampieri","year":"2014","journal-title":"Metodolog\u00eda de la Investigaci\u00f3n"},{"key":"B29","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-319-43271-7_5","article-title":"Implementation of focus group in health research","author":"S\u00e1nchez-G\u00f3mez","year":"2017","journal-title":"Computer Supported Qualitative Research. Studies in Systems, Decision and Control"},{"key":"B30","doi-asserted-by":"publisher","first-page":"123","DOI":"10.5569\/2340-5104.07.02.07","article-title":"Programa de apoyo para reducir la ansiedad en abuelos de ni\u00f1os con trastorno del espectro autista.","volume":"7","author":"Sevilla","year":"2019","journal-title":"Rev. Esp. Discapacidad"},{"key":"B31","doi-asserted-by":"publisher","first-page":"484","DOI":"10.1111\/j.1468-3148.2012.00695.x","article-title":"Children on the autism spectrum: grandmother involvement and family functioning.","volume":"25","author":"Sullivan","year":"2012","journal-title":"J. Appl. Res. Intellect. Disabil."},{"key":"B32","doi-asserted-by":"publisher","first-page":"119","DOI":"10.1606\/1044-3894.87","article-title":"Grandparents of children with developmental disabilities: intergenerational support and family well-being.","volume":"84","author":"Trute","year":"2003","journal-title":"Fam. Soc."},{"key":"B33","doi-asserted-by":"publisher","first-page":"135","DOI":"10.1037\/1091-7527.26.2.135","article-title":"Grandmother support for parents of children with disabilities: gender differences in parenting stress.","volume":"26","author":"Trute","year":"2008","journal-title":"Fam. Syst. Health"},{"key":"B34","author":"Tumbarello","year":"2010","journal-title":"Grandmother SUPPORT, FAMIly Functioning, and Parenting Stress in Families with a Child with a Disability."},{"key":"B35","author":"Velasco","year":"2016","journal-title":"Los Abuelos ante la Discapacidad de su Nieto The Grandparents Before his Grandson\u2019s Disability."},{"key":"B36","article-title":"\u201cEvaluar la calidad en la investigaci\u00f3n cualitativa,\u201d","author":"Vicario","year":"2013","journal-title":"Proceedings of the 2nd National Congress on Research Methodology in Communication"},{"key":"B37","doi-asserted-by":"publisher","first-page":"355","DOI":"10.1016\/j.jaging.2011.01.002","article-title":"\u2018My grandchild has a disability\u2019: impact on grandparenting identity, roles and relationships.","volume":"25","author":"Woodbridge","year":"2011","journal-title":"J. Aging Stud."},{"key":"B38","doi-asserted-by":"publisher","first-page":"705","DOI":"10.1590\/1413-73722419312","article-title":"Apoio intergeracional em fam\u00edlias com crian\u00e7as com defici\u00eancia.","volume":"19","author":"Yamashiro","year":"2014","journal-title":"Psicol. Estudo"},{"key":"B39","doi-asserted-by":"publisher","first-page":"354","DOI":"10.1352\/1934-9556-56.5.354","article-title":"Grandparents of children with intellectual and developmental disabilities: navigating roles and relationships.","volume":"56","author":"Yang","year":"2018","journal-title":"Intellect. Dev. Disabil."}],"container-title":["Frontiers in Psychology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpsyg.2021.661205\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,9,13]],"date-time":"2021-09-13T05:40:48Z","timestamp":1631511648000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpsyg.2021.661205\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,9,13]]},"references-count":39,"alternative-id":["10.3389\/fpsyg.2021.661205"],"URL":"https:\/\/doi.org\/10.3389\/fpsyg.2021.661205","relation":{},"ISSN":["1664-1078"],"issn-type":[{"value":"1664-1078","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,9,13]]},"article-number":"661205"}}