Breaking Difficult News in a Cross-cultural Setting: a Qualitative Study about Latina Mothers of Children with Down Syndrome

Objetivo: Identificar o conhecimento e a percepção das mães quanto à sexualidade de seu filho, portador da Síndrome de Down, nas cidades do Sul de Minas Gerais. Materiais e métodos: Estudo de abordagem qualitativa do tipo descritivo, exploratório e transversal. A amostra foi constituída de 20 participantes, que foram escolhidos pela amostragem bola de neve. Para tanto, foi necessário ampliar para as cidades ao redor de Itajubá, são elas: Delfim Moreira, Paraisópolis, Piranguinho e Santa Rita do Sapucaí. Foi utilizado o método do Discurso do Sujeito Coletivo (DSC), iniciando através da identificação das Expressões Chaves (ECH) onde revelaram as essências do depoimento e a partir delas foram formuladas as Ideias Centrais (IC), que revelaram e descreveram o sentido de cada um dos discursos analisados. Resultados: A maior parte das mães está consciente da sexualidade de seu filho adolescente, portador de Síndrome de Down, porém não percebem no cotidiano. A segunda maior parte das mães não considera a sexualidade, assim seus filhos são reprimidos e não recebem orientação sexual apropriada. Conclusão: Oportunizou uma nova visão de atendimento adequado a elas e consequentemente melhor compreensão das mesmas para com seu filho.Palavras-chave: Adolescentes, Sexualidade, Síndrome de Down.ABSTRACTObjective: Identify the knowledge and awareness of mothers who have children with Down syndrome about the sexuality of their children in cities of southern Minas Gerais. Material and methods: Qualitative study, which uses a descriptive, exploratory and transversal methodology. The sample consisted of 20 participants who were chosen by the snowball sampling. Thereby, it was necessary to expand the study to others cities around Itajubá, such as Delfim Moreira, Paraisópolis, Piranguinho, and Santa Rita do Sapucaí. The Collective Subject Discourse (CSD) was the method used, starting with the identification of the Key Expressions (KE) which revealed the essence of the testimony. By these means, the Central Ideas (CI) were formulated and these central ideas revealed and described the meaning of each analyzed speech. Results: The majority of mothers are aware of the sexuality of their teenage child with Down syndrome, but they do not notice it in day-to-day life. Yet, some of the mothers do not consider sexuality; so, their children are repressed and do not receive appropriate sexual orientation. Conclusion: This new vision provides an opportunity to adequate a counseling treatment to the mothers changing, consequently, the way they understand their children.Keywords: Teenage, Sexuality, Down Syndrome.

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Constructing the (m)other

Narrative Inquiry ◽

10.1075/ni.21.2.06lal ◽

2011 ◽

Vol 21 (2) ◽

pp. 276-293 ◽

Cited By ~ 14

Author(s):

Priya Lalvani

Keyword(s):

Down Syndrome ◽

Qualitative Study ◽

Children With Disabilities ◽

Negative Outcomes ◽

Beliefs And Practices ◽

Children With Down Syndrome ◽

Conceptual Shift ◽

Dominant Narratives ◽

Shed Light

This qualitative study explored the ways in which mothers of children with Down syndrome interpreted their experiences of motherhood. The narratives of 19 mothers were analyzed. The findings indicate that their identities as mothers were negotiated in the context of the sociocultural meaning of disability and dominant narratives on motherhood. In institutional and interpersonal discourses, they became positioned as other. Their narratives shed light on their resistance to otherness, their contextualized understanding of mothering a child with Down syndrome, and the ways in which they negotiated access to the constructed category of normative motherhood. The study suggests that a conceptual shift is needed in understanding the familial experience of raising a child with Down syndrome. Moving away from assumptions of negative outcomes for these families, professionals need to acknowledge the embeddedness of their experiences in sociocultural beliefs and practices that devalue children with disabilities.

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Εμπειρίες και βιώματα μητέρας παιδιού με σύνδρομο Down: μια μελέτη περίπτωσης

Psychology: the Journal of the Hellenic Psychological Society ◽

10.12681/psy_hps.26248 ◽

2021 ◽

Vol 26 (1) ◽

pp. 264

Author(s):

Μαρία Μαρκοδημητράκη ◽

Μαρία Κυπριωτάκη

Keyword(s):

Down Syndrome ◽

Intensive Care ◽

Qualitative Study ◽

Female Child ◽

Daily Basis ◽

Intervention School ◽

Structured Interviews ◽

Family Network ◽

Children With Down Syndrome

Parents of children with Down syndrome face many challenges and have various needs related to their children’s difficulties. The purpose of this qualitative study is to detect the experiences of a mother of a female child with Down syndrome. More specifically, through semi-structured interviews, the study aims to explore the feelings of the mother, her involvement in the child’s life, as well as her relationships with the familial and social context. The results showed that the mother is significantly involved in her child’s life and faces various difficulties (e.g. acceptance of the child and her intensive care) on a daily basis, which she copes with supported by the intra-family network. By understanding the experiences of the specific mother, as the latter are examined in the present qualitative study, important issues emerge, related to diagnosis and early intervention, school integration of a child with Down syndrome, the role of family members in her education and therapy, as well as concerns regarding her future.

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LIVED EXPERIENCES OF MOTHERS OF CHILDREN WITH DOWN'S SYNDROME IN SELECTED SCHOOLS AT MANGALORE

Journal of Health and Allied Sciences NU ◽

10.1055/s-0040-1703685 ◽

2013 ◽

Vol 03 (03) ◽

pp. 087-092

Author(s):

Reeja Mol R. ◽

Sujatha R.

Keyword(s):

Down Syndrome ◽

Qualitative Study ◽

Lived Experiences ◽

Down's Syndrome ◽

Down’S Syndrome ◽

Lifestyle Changes ◽

Research Approach ◽

Special Schools ◽

Children With Down Syndrome ◽

Community Acceptance

AbstractThis qualitative study explored the mother's experiences of parenting a child with Down's syndrome. The research approach used in this study was Phenomenology. Interviews were conducted with seven mothers who had a child with Down syndrome. The study was conducted at selected special schools at Mangalore. From the Analysis of the data six major themes were emerged. Non acceptance – Birth of an abnormal child, Lifestyle changes, High bonding between family members, Worried about the unpredictable future of the child, Societal and Community acceptance and Positiveness towards life. These findings show that birth of a child with Down syndrome produces tremendous physical and psychological effect in parents. So parents need adequate support from nurses right from the very birth of a disabled child. Therefore this study is important for nurses working with families having children with Down syndrome. They need to realize and aware of the problems faced by the families and should advocate necessary support.

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Mothers of Children With Down Syndrome: Constructing the Sociocultural Meaning of Disability

Intellectual and Developmental Disabilities ◽

10.1352/2008.46:436-445 ◽

2008 ◽

Vol 46 (6) ◽

pp. 436-445 ◽

Cited By ~ 14

Author(s):

Priya Lalvani

Keyword(s):

Down Syndrome ◽

Qualitative Study ◽

Social Environment ◽

Meaning Making ◽

Medical Community ◽

Sociocultural Context ◽

Attitudes Toward Disability ◽

Negative Attitudes ◽

Children With Down Syndrome ◽

Perceptions Of Disability

Abstract A qualitative study explored mothers' experience of the birth of a child with Down syndrome within a sociocultural context. Nine mothers of children with Down syndrome were interviewed. Mothers discussed responses to their child's diagnosis as well as negative attitudes toward disability that were displayed by members of the medical community. The narratives highlight the process of meaning-making that these mothers engaged in, their resistance to the dominant discourse on disability, and their eventual transformations in perceptions of disability and motherhood. The study suggests that the meaning of Down syndrome may be culturally embedded and that mothers of children with Down syndrome locate their child's disability within a social environment.

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Listening to fathers: Personal impacts of raising children with Down syndrome

Journal of Intellectual Disabilities ◽

10.1177/1744629518801112 ◽

2018 ◽

Vol 23 (3) ◽

pp. 310-326 ◽

Cited By ~ 1

Author(s):

Laura E Marshak ◽

Emily E Lasinsky ◽

Courtney Williams

Keyword(s):

Down Syndrome ◽

Qualitative Study ◽

Thematic Analysis ◽

Personal Growth ◽

Positive Emotions ◽

Raising Children ◽

Children With Down Syndrome ◽

Contributory Factors ◽

Biological Fathers ◽

Over Time

The aim of this qualitative study was to contribute to an understanding of how biological fathers ( N = 311) believe having a child with Down syndrome has impacted them personally. Thematic analysis was used to derive meaning from responses to open-ended survey questions. In addition to describing personal impacts, fathers shared how their perspectives shifted over time and possible contributory factors. The results indicated that fathers were often deeply impacted by the experience of parenting a child with Down syndrome. The vast majority expressed positive changes in terms of personal growth; however, it is important to note that positive emotions often coexisted with more distressing ones such as anxiety and loss. Most fathers reported a positive trajectory in terms of their adjustment and many attributed it to learning that their negative assumptions about people with Down syndrome were not accurate. Implications for practitioners and researchers are discussed.

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