An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome

Haddad, Fatma; Bourke, Jenny; Wong, Kingsley; Leonard, Helen

doi:10.1371/journal.pone.0197394

Cited by 36 publications

(45 citation statements)

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“…Children with DS are at higher risk of various health problems (Asim, Kumar, Muthuswamy, Jain, & Agarwal, 2015). Comparative studies have found that there are lower levels of physical well‐being in individuals with DS than their TD counterparts (Haddad, Bourke, Wong, & Leonard, 2018; Van Gameren‐Oosterom et al, 2011). These results call for organized multidisciplinary efforts to improve their physical well‐being.…”

Section: Discussionmentioning

confidence: 99%

Quality of life in individuals with Down syndrome aged 4 to 21 years

Lee

Knafl

et al. 2020

Child

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Background: To date, investigations of quality of life (QoL) in children with Down syndrome (DS) are rather limited. The purpose of this study was twofold: to examine QoL in children with DS and to explore possible differences in the QoL by age and gender. Methods: A cross-sectional study of 211 parents of children with DS was conducted using an online survey that included a consent form, a demographic questionnaire and the English version of KidsLife, which is a measure of children's QoL. Results: Our results demonstrated moderate or favourable levels of QoL except for the emotional well-being domain among children with DS. The children's QoL showed no variance by gender. However, emotional and material well-being, interpersonal relations and social inclusion varied by age. Conclusions: The current findings provide important evidence that will help healthcare, educational and social services professionals to understand the multiple aspects of QoL in children with DS and support parents in their efforts to ensure the child's QoL. The results also point to the need to develop interventions aimed at improving QoL in those areas where children with DS are at increased risk for poorer QoL.

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Section: Discussionmentioning

confidence: 99%

Quality of life in individuals with Down syndrome aged 4 to 21 years

Lee

Knafl

et al. 2020

Child

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“…Down syndrome (DS), also known as trisomy 21, is the most common form of intellectual disability among newborn infants. At different ages, a variety of physical problems can arise and necessitate screening, prevention, and treatment [4][5][6]. The different health professions most frequently involved are pediatrics (celiac disease, growth, hypothyroidism, leukemia), cardiology (congenital heart defects), optometrist and ophthalmologist (visual acuity and squint), ENT-physician (chronic ear infections, hearing defect, and sleep apnea), orthopedics (hip dysplasia and dislocation), speech therapy (speech delay and disturbed oral motor function), dietetics (obesity and malnutrition), and physiotherapy (motor retardation and screening of development) [7,8].…”

Section: Introductionmentioning

confidence: 99%

Providing person-centered care for patients with complex healthcare needs: A qualitative study

et al. 2020

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Background People with chronic conditions have complex healthcare needs that lead to challenges for adequate healthcare provision. Current healthcare services do not always respond adequately to their needs. A modular perspective, in particular providing visualization of the modular service architecture, is promising for improving the responsiveness of healthcare services to the complex healthcare needs of people with chronic conditions. The modular service architecture provides a comprehensive representation of the components and modules of healthcare provision. In this study, we explore this further in a qualitative multiple case study on healthcare provision for children with Down syndrome in the Netherlands. Methods Data collection for four cases involved 53 semi-structured interviews with healthcare professionals and 21 semi-structured interviews with patients (the parents of children with Down syndrome as proxy). In addition, we gathered data by means of practice observations and analysis of relevant documents. The interviews were audio-recorded, transcribed verbatim and analyzed utilizing the Miles and Huberman approach. Results Our study shows that the perspectives on healthcare provision of professionals and patients differ substantially. The visualization of the modular service architecture that was based on the healthcare professionals’ perspective provided a complete representation of (para)medical outcomes relevant to the professionals’ own discipline. In contrast, the modular service architecture based on the patients’ perspective, which we define as a person-centered modular service architecture, provided a representation of the healthcare service that was primarily based on functional outcomes and the overall wellbeing of the patients. Conclusion Our study shows that visualization of the modular service architecture can be a useful tool to better address the complex needs and requirements of people with a chronic condition. We suggest that a person-centered modular service architecture that focuses on functional outcomes and overall wellbeing, enables increased responsiveness of healthcare services to people with complex healthcare needs and provision of truly person-centered care.

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“…Given the aforementioned characteristics and support needs specific to people with DS, it is critical to better understand and measure QoL in this population. Most studies have focused on family QoL (Marchal, Maurice-Stam, van Trotsenburg, & Grootenhuis, 2016;Vadakedom et al, 2017) or health-related QoL (Graves et al, 2016) and found significantly poorer scores for youth with DS in comparison with normative data (Haddad, Bourke, Wong, & Leonard, 2018;Jung, Chung, & Lee, 2017;Rofail et al, 2017;Shields et al, 2018;Xanthopoulos et al, 2017). Yet individual QoL is a broader and more comprehensive construct that is not merely reduced to health-related wellness as other important domains and indicators that are relevant for children with DS need to be articulated in order to develop comprehensive interventions (Murphy et al, 2017;Newton, 2018).…”

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confidence: 99%