The Factors Affecting the Family Burden and Depression Status of Families of Children with down Syndrome in Turkey

2019 ◽  
Vol 12 (3-4) ◽  
pp. 176-195
Author(s):  
Nesrin Ilhan ◽  
Latife Utaş Akhan ◽  
Şerafettin Baygut ◽  
Gül Nazar Dalli ◽  
Ceyhun Yildirim
2018 ◽  
Vol 69 (1) ◽  
pp. 208-213
Author(s):  
Mariana Pacurar ◽  
Bogdan Dragomir ◽  
Alina Silvana Szalontay ◽  
Cristian Romanec

Genetics is a key discipline in medicine, but also a clinical discipline with medical and social implications. The interest in reducing the number of genetic disorders and recognizing the risk of them repeating when a family confronts itself with a genetic anomaly becomes more and more important in the hierarchy of prophylactic emergencies. Presenting themselves as metabolic diseases (monogenic mutations) or malformations (polygenic and multifactorial heredity) because of their frequency, these disorders position themselves on an ascendant curve. They become difficult to deal with for the society, for the family and for the interested individual and cause emotional disorders. The Down syndrome is the most frequent type of genetic disorder. It is characterized by a specific set of signs and symptoms. People with Down syndrome require special medical care that, apart from the family, must include a team of doctors of various specializations and also a dentist. They are predisposed to hearing and sight disorders and thyroid problems as well. In 50% of the cases there are also anomalies of the heart, and the risk of leukaemia is 20 times higher. Some of them even develop an Alzheimer type dementia during their life. The people with Down syndrome can have an average IQ up to a moderate form of handicap. In particular, the studies on Down syndrome in dentistry are quite frequent, but they focus more on cavities, periodontal disease and hypodontia. In spite of this, the connection of Down syndrome and dental eruption is less studied. Consequently, the present study is intended to fill this missing part from the specialized literature, focusing on the relation between the Down syndrome and the chronological and dental ages in children. The health of the oral cavity is neglected in these patients, their parents focusing more on the treatment of the other systemic disorders of their children; the lack of interest is reflected in their poor oral hygiene.The trial group included 94 children with mixt dentition, aged between 6 and 12, divided as follows: 36 children with Down syndrome enrolled at the Educational Centre for Inclusive Education no. 1 of Tg. Mures and Alpha Transilvana Foundation. The chronology and the eruption sequences are subjected to certain variations and they are influenced by the presence of cavities, the premature loss or, on the contrary, the prolonged retention of deciduous teeth as well as dental anchylosis. Dental maturation is less subjected to variations, as it is a progressive, continuous and cumulative process. The presence of Down syndrome in children generates a delay in teeth eruption by 1.27 years compared to the data identified in the specialized literature and to the information obtained on the healthy children included in the study.


Author(s):  
Ann-Christin Sollerhed ◽  
Gerth Hedov

From a public health perspective, it is important that children with Down syndrome (DS) lay the foundations of physical activity (PA) early in life to keep active in school, as teenagers and as adults. The aims were to investigate PA patterns in children and adolescents with DS, as well as their parents’ and siblings’ PA patterns. Methods: A survey was performed among 310 families with children with DS (54% boys and 46% girls) aged 8–18 years (mean 14.04, SD 3.18) in Sweden. Chi-squared tests and multiple logistic regression were carried out. Results: Nineteen percent of children and adolescents with DS and 34% of the parents were active three or more times per week. The child’s PA level was significantly associated with parents’ PA (OR = 5.5), siblings’ PA (OR = 5.1) and the child’s locomotion ability (OR = 3.5). Physically active parents had active children to a greater extent than inactive parents (59% vs. 29%; p < 0.001). Conclusions: Physically active parents have active children. To promote PA among children and adolescents with DS, it is important to promote and pay attention to the parents’ and siblings’ PA behavior, as children with DS are dependent on support from the family.


2019 ◽  
Vol 13 (1) ◽  
pp. 20-33
Author(s):  
Isnawijayani Isnawijayani

The purpose of this study illustrate the Children who are born with disabilities or mental retardation. Has characteristics that are easily recognizable as mental retardation (mental obstacles), visual impairment (visual barriers), hearing impairment (hearing barriers), physical impairment (disability). Seen as a useless person. Not many people know that they can also be self-sufficient and achievement. Communication with parents to see children with Down Syndrome. With descriptive qualitative methods, this study using the Theory of Applied Behaviour Analysis (ABA) on Ivar O.Lavass to change deviant behavior to control the behavior of children with Down syndrome. organize a matter of habit and teaching capabilities required to accept the way of communication and behavior in the family. The author has observed a child with Down syndrome by interviewing parents plus a look at the achievements that can be achieved Down syndrome children. It turned out that the success of Down syndrome children participate in daily life activities, introduced like a normal person, respond to and appreciated. Communication with mercy and patience and practice areas of interest, can make a Down syndrome child independently, achieving even be the name of the nation. Tujuan penelitian ini menggambarkan Anak yang dilahirkan dengan berkebutuhan khusus atau down syndrome. Memilik karakteristik yang mudah dikenali dengan sebutan tunagrahita (hambatan mental), tunanetra (hambatan penglihatan), tunarungu (hambatan pendengaran), tunadaksa (cacat tubuh). Dipandang sebagai orang yang tidak berguna. Belum banyak yang mengetahui bahwa mereka ini juga dapat mandiri dan berprestasi. Dengan melihat Komunikasi orangtua terhadap anak penderita down Syndrom. Dengan metode deskriptif kualitatif, penelitian ini menggunakan Teori Applied BehaviourAnalysis (ABA) dari Ivar O.Lavass yangdapat mengubah perilaku menyimpang untuk mengontrol perilaku anak down syndrome. mengatur masalah kebiasaan dan mengajarkan kemampuan yang diperlukan dengan menerima cara komunikasi dan perilaku dalam keluarganya. Penulis mengamati seorang anak down syndrome dengan mewawancarai orangtuanya ditambah dengan melihat prestasi-prestasi yang dapat diraih anak-anak down syndrom. Ternyata keberhasilan anak down syndrome kesehariannya diikutsertakan dalam aktivitas kehidupan, dikenalkan layaknya orang normal, direspon dan dihargai. Dengan komunikasi kasihsayang dan kesabaran serta latihan bidang yang diminati, dapat menjadikan anak down syndrome mandiri, berprestasi bahkan dapat mengharumkan nama bangsa


Author(s):  
Jolanta Lipińska-Lokś

The birth of a child is a major event in family life, which makes parents take on an important role in their lives, characterised by new tasks, chief among which are the care and upbringing of their offspring. Unfortunately, in many families, some factors emerge that may affect their functioning, disrupt the course of family life, and leave a permanent mark on the family’s history. Such a situation can be difficult for many –and many parents find the process of accepting a child with a disability (Down syndrome) and themselves as parents of a child with Down syndrome a long and arduous journey, since taking care of a child, upbringing and supporting their development is an issue in itself, but also a challenge for parents. In many cases, both the child and their parents need support in their daily life, ensuring their high quality of life. The objective of this study is to outline the functioning of families of children with Down syndrome. Due to the complex nature of the issue at hand, only selected aspects of the functioning of families were diagnosed, showcasing the changes in the family life and its functioning as a result of the birth of children with Down syndrome. The study was based on qualitative methodologies, by analysing individual cases using interview technique and interview dispositions. The research group comprised 10 families of children with intellectual disabilities, and the interviewed group was made up of 10 mothers and 3 fathers in Zielona Góra.


Author(s):  
Patrícia Pinto Braga ◽  
Juliana Barony da Silva ◽  
Bárbara Radieddine Guimarães ◽  
Márcia Van Riper ◽  
Elysângela Dittz Duarte

ABSTRACT Objective: To analyze problem-solving and coping strategies of parents of children with Down Syndrome in family adaptation. Method: This is a qualitative research that used the Resiliency Model of Family Stress, Adjustment, and Adaptation. Participants were mothers and/or fathers from 40 families of children aged 1 to 7 years diagnosed with DS. Directed content analysis was performed, supported by software and considering a code dictionary. Results: Problem-solving and coping proved to be a set of actions, behaviors, efforts, and communications that contributed to family adaptation and favored balance between the demands imposed by Down Syndrome and the acquisition of resources by the family. Conclusion: In the first moment, which corresponds to the time of news or diagnosis of the syndrome and the first days after birth, internal and external resources, which represent coping, are developed to accept and refocus ideas and feelings towards Down Syndrome. Over time these resources have an effect and cause changes in family functioning patterns and in the relationship of these families with the outside world, as they seek child development.


2011 ◽  
Vol 19 (4) ◽  
pp. 985-993 ◽  
Author(s):  
Michelle Darezzo Rodrigues Nunes ◽  
Giselle Dupas

This study develops a theoretical model concerning the experience of families of children with Down syndrome in preschool and school age. The frameworks used were Symbolic Interactionism and Grounded Theory. Semi-structured interviews were used as the instrument of investigation and ten families participated in the study. The Theoretical Model "Seeking the child's independence and autonomy through constant stimulation" was identified, which shows the family's efforts to enable the child to develop the best s/he can through stimulation in order to become less dependent in the future. This model can be used to facilitate interaction with the family and can be further expanded. Nurses should use spaces dedicated to care delivery to establish bonds with the family, and seek other spaces families frequent, to better meet their needs, since there are significant gaps in care and research addressing this population. Instead, they should be welcomed and seen as a partner in care delivery.


Author(s):  
Anna Banasiak

The aim of the research presented in this article was to determine the level of parental stress among mothers of autistic children. Thirty-nine mothers of autistic children, forty mothers of children with Down syndrome as well as forty mothers of children with developing normally took part in the study. We used the Questionnaire on Resources and Stress (QRS, designed by J. Holroyd) to assess the parental stress among families of developmentally delayed children or children with intellectual disabilities. The results of the study indicate that, comparing to mothers of children with Down syndrome and mothers of children developing well, mothers of autistic children are the ones who experience the highest level of parental stress. Potential sources of coping strategies among mothers of children that suffer from autism are associated with relatively low stress levels as a result of disharmony within the family, personal issues, the child’s health situation and financial problems.


2021 ◽  
Vol 3 (3) ◽  
pp. 371-378
Author(s):  
Candra Hadi Prasetiya ◽  
Emilia Puspitasari Sugiyanto ◽  
Wijanarko Heru Pramono

The process of palliative patient care indirectly causes a burden on the family. This study aims to determine the description of the family burden in caring for palliative patients. This study is a qualitative research with a phenomenological study design. Participant criteria are families who care for patients for at least 6 months. The number of respondents in this study were 4 respondents as care givers of palliative patients. The research method using the analysis method used includes categorizing themes, compiling sub-categorization of themes and the last is the coding process. The results of the study showed that there was a description of the family burden of palliative patients and a description of the factors that influenced palliative patients including economic status, patient complaints, family support, family perception, availability of treatment support tools, and the ability of families to manage family burdens. The burden on the family can be reduced by training the family to manage the existing factors.


2018 ◽  
Vol 17 (1) ◽  
Author(s):  
Asrul Abdul Wahab ◽  
Ezura Madiana Md. Monoto

Children with Down syndrome are known to have intellectual disability, developmental milestone delay and may also have associated medical conditions. Having a child with Down syndrome could be physically and emotionally challenging to the affected family members. The impact on a family can be multifaceted which can alter the family dynamics and harmony. Most parents felt inadequate with the information given by the healthcare providers. Parents support group plays an important role to support and provide information and resources to other parents of children with Down syndrome. The knowledge and experience on raising the children with Down syndrome are shared with the new parents. This includes the importance of Early Intervention Program (EIP), inclusive education, the benefits of People with Disability card, sharing success story of people with Down syndrome and providing emotional support to the family to boost their confidence and keeping up their positive spirit in raising their children, regardless of their religions and beliefs. Apart from that, we also organize and participate in activities to raise public awareness, advocating for the rights, inclusion and well being of people with Down syndrome, through social and mass media and annual celebration of World Down Syndrome Day on the 21st March. We promote the benefits of inclusive environment so that people with Down syndrome are able to enjoy full and equal rights on an equal basis with other people; enabling them to live, work and participate with confidence and individual autonomy, fully included in society alongside their friends and peers. As healthcare professionals and parents of a child with Down syndrome, we are sharing our own experiences in engaging with other parents of children with Down syndrome to understand the issues and concerns, sharing resources available around them and ways to support them throughout the journey of raising a child with Down syndrome.


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