scholarly journals Understanding meaningful symptoms and challenges in people with Down syndrome and dementia: A qualitative study of caregivers’ perspectives

2020 ◽  
Vol 16 (S9) ◽  
Author(s):  
Kari Knox ◽  
Justin Stanley ◽  
James A Hendrix ◽  
Hampus Hillerstrom ◽  
Jillian Achenbach ◽  
...  
Keyword(s):  
Down Syndrome ◽  
Qualitative Study

scholarly journals Termination of pregnancy following a prenatal diagnosis of Down syndrome: A qualitative study of the decision-making process of pregnant couples

2018 ◽  
Vol 97 (10) ◽  
pp. 1228-1236 ◽  
Author(s):  
Stina Lou ◽  
Kathrine Carstensen ◽  
Olav Bjørn Petersen ◽  
Camilla Palmhøj Nielsen ◽  
Lone Hvidman ◽  
...  
Keyword(s):  
Decision Making ◽  
Down Syndrome ◽  
Prenatal Diagnosis ◽  
Qualitative Study ◽  
Termination Of Pregnancy ◽  
Decision Making Process

scholarly journals O017 Parents’ experiences of having a child with Down Syndrome and sleep difficulties

2021 ◽  
Vol 2 (Supplement_1) ◽  
pp. A8-A8
Author(s):  
M Miguel ◽  
E Cooke ◽  
J Chawla
Keyword(s):  
Down Syndrome ◽  
Qualitative Study ◽  
Family Dynamics ◽  
Well Being ◽  
Time Function ◽  
Family Quality Of Life ◽  
Specific Information ◽  
Structured Interviews ◽  
Sleep Difficulties ◽  
Parents Experiences

Abstract Introduction This qualitative study that investigates parents’ experiences of having a child with Down Syndrome (DS) and sleep difficulties is a part of a broader mixed-method study entitled Sleep Difficulties in Children with Down Syndrome: An Evaluation of Parent/Carer and Family Quality of Life. Methods We conducted semi-structured interviews with 26 parents (fathers n = 4 and mothers n = 22), and reflexive Thematic Analysis (TA) was operationalised for data analysis. The interviews covered the following key topics: DS diagnosis; timeline of their child’s sleep patterns and difficulties; implications for parental sleep, day-time function, and well-being; family dynamics; and access to supports. Results Most participants described negative experiences at time of diagnosis, including not feeling listened to, and receiving inconsistent, insensitive and inadequate information and/or treatment. Most strikingly, no parents recall receiving sleep specific information. Most participants described their child’s sleep difficulties affecting their own sleep, day-time function and family dynamics, yet they commonly normalised these experiences. Such normalisation was a recurring theme across their experiences of having a child with DS and is contextualised by their accounts of resisting prejudiced attitudes towards their child since diagnosis. Discussion This is the first qualitative study to investigate parents’ experiences of having a child with DS and sleep difficulties. Implications include professional development for health care workers focusing on sleep as a significant comorbidity for these children, and awareness of families’ tendencies to normalise their experiences when delivering care.

scholarly journals Parental Perspectives on Pharmacological Clinical Trials: a Qualitative Study in Down Syndrome and Fragile X Syndrome

2017 ◽  
Vol 26 (6) ◽  
pp. 1333-1340 ◽  
Author(s):  
Victoria Reines ◽  
Krista Charen ◽  
Tracie Rosser ◽  
Arri Eisen ◽  
Stephanie L. Sherman ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Down Syndrome ◽  
Qualitative Study ◽  
Fragile X Syndrome ◽  
Fragile X ◽  
Parental Perspectives

scholarly journals Pregnant women’s views on how to promote the use of a decision aid for Down syndrome prenatal screening: a theory-informed qualitative study

2018 ◽  
Vol 18 (1) ◽  
Author(s):  
Titilayo Tatiana Agbadjé ◽  
Matthew Menear ◽  
Michèle Dugas ◽  
Marie-Pierre Gagnon ◽  
Samira Abbasgholizadeh Rahimi ◽  
...  
Keyword(s):  
Down Syndrome ◽  
Qualitative Study ◽  
Decision Aid ◽  
Prenatal Screening ◽  
Women’S Views

Percepção das Mães Quanto à sexualidade de seu Filho Adolescente com Síndrome de Down / Perception of Mothers Who Have Children with Down Syndrome Regarding their Teenage Child’s Sexuality

1970 ◽  
Vol 6 (2) ◽  
pp. 53-64
Author(s):  
Daniele Cristina da Silva ◽  
Mariângela Gomes da Paixão ◽  
Débora Vitória Alexandrina Lisboa Vilella
Keyword(s):  
Down Syndrome ◽  
Sexual Orientation ◽  
Qualitative Study ◽  
Minas Gerais ◽  
Snowball Sampling ◽  
Children With Down Syndrome ◽  
New Vision ◽  
Teenage Sexuality ◽  
The Way

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.

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

2011 ◽  
Vol 21 (4) ◽  
pp. 582-590 ◽  
Author(s):  
Kayla M. Sheets ◽  
Bonnie J. Baty ◽  
Juan Carlos Vázquez ◽  
John C. Carey ◽  
Wendy L. Hobson
Keyword(s):  
Down Syndrome ◽  
Qualitative Study ◽  
Cross Cultural ◽  
Latina Mothers ◽  
Cultural Setting ◽  
Children With Down Syndrome

Constructing the (m)other

2011 ◽  
Vol 21 (2) ◽  
pp. 276-293 ◽  
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.

Sign in / Sign up

Export Citation Format

Share Document