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

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.

Author(s):  
Hasan Jafari ◽  
Abbass YazdanPanah ◽  
Abdolreza Akbari

Background: One of the ways through which the quality of the hospital services can be improved is the accreditation, and most of the countries have launched their own accreditation system as a strategy to improve services. The aim of this research was to investigate the way of implementing the accreditation programs at Shahid Motahhari educational center in Marvdasht city. Methods: The current study was qualitative with conventional content analysis which was conducted by using the semi-structured interviews with eight officials and employees of Marvdasht Shahid Motahhari Medical Education Center in 2017. Purposeful sampling was done in this study and the next stage; the snowball sampling method was used to select the desired samples. Data were gathered to reach the data saturation point, and conventional content analysis was done to analyze the research data. Results: Two main themes and nineteen sub-themes were obtained through the nine categories. Self-confidence in the team, sense of superiority and achievement, all units’ coordination, accurate and scientific coherent supervision and management, and considering the book of standards as a guiding factor are among the strengths of this research.Poor management of programs, lack of proper context while running the program, lack of proper training, lack of financial and human resources, lack of commitment and interest in implementing the program among different groups were main identified barriers of the program. Conclusion: The effective factors on the implementation of the accreditation standards in the healthcarecenters should be identified. Besides, planning effective education, continued monitoring and assessing, creating suitable contexts of financial and human resources,consolidating the strengths and using the available potentials can be effective factors in line with the implemetation of accreditation standards.   Keywords: Accreditation, Hospital, Qualitative study, Evaluation


2011 ◽  
Vol 21 (4) ◽  
pp. 582-590 ◽  
Author(s):  
Kayla M. Sheets ◽  
Bonnie J. Baty ◽  
Juan Carlos Vázquez ◽  
John C. Carey ◽  
Wendy L. Hobson

2011 ◽  
Vol 21 (2) ◽  
pp. 276-293 ◽  
Author(s):  
Priya Lalvani

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.


Author(s):  
Μαρία Μαρκοδημητράκη ◽  
Μαρία Κυπριωτάκη

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.


2013 ◽  
Vol 03 (03) ◽  
pp. 087-092
Author(s):  
Reeja Mol R. ◽  
Sujatha R.

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.


2008 ◽  
Vol 46 (6) ◽  
pp. 436-445 ◽  
Author(s):  
Priya Lalvani

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.


2020 ◽  
Vol 22 (1) ◽  
pp. 103-118
Author(s):  
Clare Carroll ◽  
Sophie Linehan ◽  
Sinead Scott ◽  
Gráinne Quinn

Even though 2018 marked the 70th anniversary of the United Nation’s Universal Declaration of Human Rights (United Nations, 1948), published research examples which include the voices of children with disabilities are few. In the United Nations Convention on the Rights of the Child (United Nations, 1989), Article 12 states that the child has a right to express an opinion and Article 13 states that the child has the right to express their views. Communication is a fundamental human right, it allows for independence, contributes towards self-esteem and influences an individual’s identity. For those who rely on unconventional methods to communicate, this ‘right’ may be inaccessible due to external barriers such as attitudes or lack of awareness. Because the voices of children with intellectual disabilities have been rarely heard we need to explore ways to make their participation a reality. There is a pressing need to include children with disabilities as participants in research and practice in order to understand their micro- and meso-systems. This paper will share an example where three children with Down syndrome participated in research to share their views. How these children were included in terms of research design, purposeful and snowball sampling and data collection methods will be shared. The discussion in this paper will contribute to the research field where children with disabilities are generally excluded. Therefore, participatory research which includes the voices of children with disabilities is vital. This paper celebrates how children shared their views in research and shares the lessons learned aiming to support further research, policy and practice.


2018 ◽  
Vol 23 (3) ◽  
pp. 310-326 ◽  
Author(s):  
Laura E Marshak ◽  
Emily E Lasinsky ◽  
Courtney Williams

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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