Factors Affecting the Quality of Life in Families of Children with Down Syndrome: The Lived Experience of Families and Professionals

Abstract

AbstractDown syndrome is one of the most common chromosomal disorders, and the birth of a child with this syndrome can greatly impact the psychological state of parents and other family members. The purpose of this research was to study the factors that affect the quality of life in families of children with Down syndrome, based on the lived experiences of both families and professionals in this area. The research method used was qualitative, and the study included 14 families and 15 professionals who shared their experiences through semi-structured interviews. Families were selected from the special education system, while professionals were selected via snowball sampling until saturation was reached. Data were coded in three stages (open, axial, and selective coding) and analyzed. The open codes consisted of 24 concepts, while axial codes included supports received, acceptance, coping skills, child performance (function), worry, and future security. The lived experiences of families and professionals showed that receiving support, accepting the child by families and community, family coping skills, child performance, and future security are all important factors for the quality of life in families of children with Down syndrome.Extended AbstractIntroductionQuality of life is a multidimensional concept that includes objective components such as health, education, income, security, as well as subjective components such as happiness, life satisfaction and meaning in life (Tripathi, Rai & Rompay-Bartels, 2021). The attitude towards individuals with disabilities has changed a lot over the years, as a result, families' role in supporting them has become increasingly important (Brown, 2010). Down syndrome is a common chromosomal disorder that affects people all over the world. People with Down syndrome often have emotional, psychological, physical, social, and economic impacts on their families. (Eckdahl, 2018; Afrooz, 2009) There have been some studies on the quality of life of families of children with Down syndrome, but more research is still needed in this area. The present study investigated the experience of families and professionals with children with Down syndrome to understand what factors impact the quality of life of the family of children with Down syndrome.Research Question(s)Based on the lived experiences of families and experts, what are the factors affecting the quality of life of families with children with Down syndrome?Literature ReviewFamilies of children with Down syndrome also report experiencing despair, having weak coping skills, and feeling a low level of life satisfaction. (Krueger et al, 2021). Families of children with Down syndrome report more well-being when they are able to participate in groups and social networks where they can receive support and information. (Roll & Bowers, 2019). The research results indicate the impact of perceived social support, child functioning, and socio-economic status on the quality of life of the families of those with Down syndrome (Rezende et al, 2016). Also, many research studies have explored the satisfaction of families in various aspects, including acceptance, commitment to family, and pleasure (Ajuwon, 2012), dissatisfaction with health care, low income, and high medical costs (Caples et al, 2018; Babaei et al, 2017). This exhaustion and burnout, which has different objective and subject aspects, are the result of physical characteristics and cognitive deficiencies, which are very important from parents' point of view (Marron, et al, 2013). In some cases, parents refer to the events as a valuable experience that has positively impacted their lives and has helped them to develop a new perspective on life and on their own personal development (Moreira et al, 2016; Skotko et al, 2011). According to parents of children with Down syndrome, the most important positive experiences involve influencing other parents, their child's achievements, acceptance, and social connection. Parents also experienced negative experiences such as medical challenges, lack of acceptance, lack of specialized support, and lack of support from government organizations (Farkas et al, 2019; Hillman et al, 2013; Siklos & Kerns, 2006).MethodologyThe research was qualitative and used the descriptive phenomenological method to study the perspective of psychologists working in the field of Down syndrome and of the parents of children with Down syndrome. In the study, 14 families of children with Down syndrome and 15 experts participated (who were either specialists, school teachers or professors). Families of children with Down syndrome were recruited through schools, while experts on the topic were selected based on their expertise and their work in the field of Down syndrome and a semi-structured interview was used to collect data and the average time of the interviews was about 45 minutes. As the interviews took place, an analysis of their text was done in order to identify common themes and patterns. Sampling continued until saturation was reached. After the interviews, the researchers extracted and coded the common concepts and patterns by using the MAXQDA software. The researchers analyzed the results based on the Colizzis Method which has several steps: reading all the descriptions; extracting important words and sentences; providing meaning for the extracted important sentences; defining the categories; combining the results; comprehensive description and final reliability of the findings (Morrow et al, 2015). After coding, in order to data accuracy, the participants were contacted by phone and received their opinion regarding the researchers' perception of their conversations in the interviews.ResultsThese were the themes that were extracted from the interviews with parents and professionals: support, acceptance, coping skills, performance of children with Down syndrome, and concern for their future.ConclusionThe results showed that the factors of support, acceptance, coping skills, performance of a child with Down syndrome, concern and future security have an effect on the quality of life of families of children with Down syndrome. Support included support received from family members, official institutions, and informal organizations and institutions. Parents of children with Down syndrome state that it is not possible for one person to meet the needs of a child with Down syndrome, and that the more family members participate in meeting their needs and helping them, the more mental pressure and fatigue that parents experience, reduces.Most of the participants in the research complained about the lack of laws appropriate to the characteristics of these people and their families, the temporary nature or non-implementation of some of the existing laws. Regarding the financial support and facilities provided by the relevant institutions, the participants had a common view of their inadequacy and the inappropriate way of providing it.Regarding the issue of specialized support, the participants believed that considering the special mental and physical needs of people with Down syndrome, it is necessary to establish specialized treatment centers and also train counselors and psychologists in this field. Another important and significant issue was the behavior of the medical staff with the families, which the families did not have a good experience, especially from the moment of birth. Some medical care personnel have disappointed the families about the child's future.The support received from people around and informal parenting groups brings a higher quality of life for the family of children with Down syndrome. Communicating with other families in similar situations is a source of learning and emotional support.Acceptance, at the family level makes family members learn coping skills, use them and continue to make efforts to help people with Down syndrome and help them to reach the maximum possible level. Social acceptance, provide opportunity for participating in the community of families and their children. Families with higher life and communication skills, have a higher degree of adjustment and resilience. If parents have a positive view on religious values and beliefs, it helps them accept a child with Down syndrome, and see the child as a divine gift and test. Also, some parents change their opinions and beliefs after giving birth to a child with Down syndrome and choose a different worldview. Families reported greater satisfaction when their child demonstrated more self-help skills, academic achievement and success in professional activities. One of the concerns expressed by parents, was the future marriage of their child with Down syndrome and their siblings.AcknowledgmentsWe are grateful to all the families and professionals who provided us with their valuable experiences.

Keywords

• quality of life
• family
• down syndrome
• lived experience