Parenting a child with Down syndrome: A qualitative study of everyday practices in Danish families

Author(s):  
Ellen Hollands Steffensen ◽  
Lena Have Rosvig ◽  
Stephanie Santoro ◽  
Lars Henning Pedersen ◽  
Ida Vogel ◽  
...  
2018 ◽  
Vol 97 (10) ◽  
pp. 1228-1236 ◽  
Author(s):  
Stina Lou ◽  
Kathrine Carstensen ◽  
Olav Bjørn Petersen ◽  
Camilla Palmhøj Nielsen ◽  
Lone Hvidman ◽  
...  

2017 ◽  
Vol 20 (6) ◽  
pp. 707-723 ◽  
Author(s):  
Jian Xiao

While the biographical approach is widely employed in applied and theoretical social research, it is less fully developed in the specific field of (post-) subcultural studies. The article demonstrates the utility of the biographical method for (post) subcultural studies by presenting research on the punk phenomenon in an authoritarian social context within China. The discussion draws upon a qualitative study based on interviews with 34 Chinese punk musicians. Although the article focuses on one of these musicians in particular, the arguments are informed by broader research findings. Specifically, emphasis is placed on examining how the punk musician experiences the gradual process of deepening commitment to the punk scene and, through this, the multiple levels of power relations in his life. It is argued that the biographical approach can highlight the subjectivity of individual participants in their everyday practices and the wider social context in which they are actors. This article forms part of ‘On the Move’, a special issue marking the twentieth anniversary of the European Journal of Cultural Studies.


2021 ◽  
Vol 2 (Supplement_1) ◽  
pp. A8-A8
Author(s):  
M Miguel ◽  
E Cooke ◽  
J Chawla

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.


2017 ◽  
Vol 26 (6) ◽  
pp. 1333-1340 ◽  
Author(s):  
Victoria Reines ◽  
Krista Charen ◽  
Tracie Rosser ◽  
Arri Eisen ◽  
Stephanie L. Sherman ◽  
...  

2018 ◽  
Vol 18 (1) ◽  
Author(s):  
Titilayo Tatiana Agbadjé ◽  
Matthew Menear ◽  
Michèle Dugas ◽  
Marie-Pierre Gagnon ◽  
Samira Abbasgholizadeh Rahimi ◽  
...  

1970 ◽  
Vol 6 (2) ◽  
pp. 53-64
Author(s):  
Daniele Cristina da Silva ◽  
Mariângela Gomes da Paixão ◽  
Débora Vitória Alexandrina Lisboa Vilella

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.


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

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