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

2018 ◽  
Vol 23 (3) ◽  
pp. 310-326 ◽  
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.

scholarly journals A Qualitative Study on Psychological Wellbeing of Nurses Working in Palliative Ward

2019 ◽  
Vol 1 (1) ◽  
pp. 12-17
Author(s):  
Nelavathi A/P Marimuthu ◽  
Siti Salina Abdullah
Keyword(s):  
Data Analysis ◽  
Qualitative Study ◽  
Thematic Analysis ◽  
Personal Growth ◽  
Research Question ◽  
Structured Interview ◽  
Psychological Wellbeing ◽  
Positive Relation ◽  
Environmental Mastery ◽  
Research Questions

The main purpose of this research is to understand the experiences and psychological wellbeing of nurses working in palliative ward. There were two research questions driving this research throughout the process of data collection and data analysis. Four nurses from the palliative ward participated in this research to provide details on their psychological wellbeing. Semi- structured interview questions together with observation and simple survey questions were used to gather the data. Thematic analysis was used to identify the meaningful themes for each research question. Six main themes were identified: autonomy, environmental mastery, positive relation, personal growth, self-acceptance and purpose in life. The findings are highly relevant with the theory and literature. The findings indicate that the participants have good psychological wellbeing due to their huge experiences in palliative ward.

scholarly journals O018 Changes in sleep parameters in children with Down Syndrome following treatment

2021 ◽  
Vol 2 (Supplement_1) ◽  
pp. A8-A8
Author(s):  
J Chawla ◽  
S Burgess ◽  
H Heussler
Keyword(s):  
Down Syndrome ◽  
Sleep Duration ◽  
Intervention Group ◽  
Sleep Diary ◽  
Control Group ◽  
Sleep Habits ◽  
Post Intervention ◽  
Children With Down Syndrome ◽  
Sleep Parameters ◽  
Over Time

Abstract Introduction There is limited evidence about how sleep changes in children with Down syndrome (DS) following sleep interventions. This study evaluated changes in sleep over time in children receiving treatment comparing to a control group who did not. Methods Children with DS, 3-16yrs, attending the sleep clinic were followed for 24-months. Sleep parameters including parent completed child sleep habits questionnaire (CSHQ), PSG and home sleep diary were obtained pre and post sleep interventions for children undergoing treatment. Data was obtained at similar intervals for the control group who were followed over the same time period. Results Data was obtained for 41 participants, 16 children received an intervention and 25 did not. Interventions included ENT surgery (7), CPAP (4), melatonin (3) or a combination (2). The intervention group had a significantly higher average total CSHQ score overall than those in the control group (0.01). Scores decreased over time but remained higher than in controls throughout, and were clinically significant in both groups (>41). Sleep diary estimated average total sleep duration did not differ between groups and was 10hrs/night. PSG showed improvement in OAHI in those children undergoing pre and post intervention studies. Discussion Evaluation of sleep parameters in this referred cohort of children with Down syndrome demonstrates total sleep duration in keeping with national recommendations and improvement in obstruction with treatment. However, CSHQ results indicate ongoing sleep difficulties reported by parents, despite standard sleep interventions. This may reflect persisting non-respiratory sleep disorders, which are not being adequately addressed at present.

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.

Enriching the migrant experience: Blogging motivations, privacy and offline lives of Filipino women in Britain

First Monday ◽  
2009 ◽  
Author(s):  
Abigail Yao
Keyword(s):  
Qualitative Study ◽  
Thematic Analysis ◽  
Change Over Time ◽  
Emotional Connection ◽  
Face To Face ◽  
Content Change ◽  
Filipino Women ◽  
Over Time

This qualitative study explored motivations for blog creation, use and maintenance through interviews with eight Filipino women in Britain and thematic analysis of their blogs. The participants' blogs served as a medium for expression and emotional connection with an audience, communication which led to interaction through other online channels and face-to-face meetings. Blogging, as a practice leading to enriched experiences and a process in which rationale, uses and content change over time, holds both potential and challenges to adoption for migrants.

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.

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