Quality of Health Care According to People With Down Syndrome

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Quality of Health Care According to People With Down Syndrome

Introduction

Down syndrome is a genetic disorder caused by the chromosome disjunction and addition of a copy to the 21st chromosome pair. For people with Down syndrome, their major characteristic is intellectual disability. People with Down syndrome present a poor immune system and typically they have increased the risk of many health issues that may be life-threatening. Hence, enhancing the care for patients with Down syndrome becomes the greatest challenge in the nursing practice and family care. The challenge of resolving the needs of the society that involves patients with multi-morbidities resulted in the establishment of the intervention that may concentrate more on the patient other than the specific illness. The proposed intervention, in this case, patients with Down syndrome should have one on one care to minimize their behaviors.

Influence of caregiver on People with Down syndrome

According to Haddad et al. (2018) youths with Down syndrome encounter differing capabilities in daily living activities, behavior, cognitive functioning, and social skills. They conducted a study to examine from the perspective of a caregiver, the aspects that influenced these youths quality of life. The study results indicate that youths with three or more friends experienced a better quality of life than those without friends or one on one care. The findings confirmed that quality of life for youths with Down syndrome is negatively related to medical conditions burden and lack of friendships. It implies that one on one care can be effective in enhancing the behaviors of people with Down syndrome (PDS) (Haddad et al., 2018). Further, Driessen Mareeuw et al. (2019) carried out a study to explore the PDSs perspectives, their parents, and support staff concerning quality in healthcare for people with Down syndrome.

The results show that healthcare quality involves well-coordinated healthcare aligned with care systems and other support, holistic and person-centered approach comprising trust, respect, and care provider-patient communication adapted to the PDS abilities. It can, therefore, concluded that one on one care may enhance healthcare for PDS and the findings offer insight into how healthcare might correspond to the specific PDSs needs (Driessen Mareeuw et al., 2019). Shields et al. (2020) also carried out a study to examine modifiable caregiver and child aspects influencing community participation among kids with Down syndrome. The study results showed that increased caregiver time availability is related to higher attendance frequency. Besides, the higher attendance frequency is related to greater child engagement. Less child engagement was related to having less communication ability and sleep breathing disorder. It can be summed up that people with Down syndrome who actively participated in the community more regularly enjoyed greater engagement. Hence, one on one care should be aligned with the availability of time of the caregivers (Shields et al., 2020).

Influence of Family members and society as a whole on the People with Down syndrome

Moreover, Cuskelly (2020) illustrates the influences that siblings can have on the children with Down syndrome developmental outcomes comprising those associated with language, cognitive, social-emotional functioning, self-regulation, and identity development. The author noted that there is little research that addresses siblings effects on people with Down syndrome. The author asserts that siblings play an influential role to PDS that can comprise teacher; social referent and model; foe and friend; contrast; and protector, advocate, and caregiver. Besides, sibling relationship quality can influence developmental outcomes of PDS. A few investigations that have been carried out recommend that siblings create a significant contribution to developmental outcomes of PDS. Hence, this can affirm that one on one care for PDS improves their behaviors.

When PDS receive direct care from their siblings helps to enhance their behaviors (Cuskelly, 2020). Dolva et al. (2019) further, noted that a first generation of adolescents with Down syndrome was brought up in an inclusive society of Norway. They carried out a study to explore their social leisure participation and friendships, majorly as it reflected via their subjective encounter. The study results show that the adolescents with Down syndrome demonstrated that their social life was varied and rich, happening in many contexts with various companions. Their thoughts of relationships were expansive, besides comprising less close associations. The study depicted three contextual social participation patterns: the peer group pattern, family at home pattern, and the arranged company pattern. It can be summed up that one on one relationship with a family member or a peer friend, or an arranged company friend will influence the PDS behavior positively as the adolescents demonstrated to experience social life that is rich and varied. It emphasis care on one on one improves PDS behavior. The association between the findings and the national policy on social inclusion should be researched and discussed more (Dolva et al., 2019).

Furthermore, Huiracocha et al. (2017) assert that a majority of studies on parenting kids with Down syndrome have been carried out in developed nations. It implies that more research needs to be done relating to developing nations. They recommend that sensitive communication on the part of social support and professionals may result in positive adjustments and acceptance in the family. They conducted a study analyzing the effect of a diagnosis of Down syndrome on families focusing on how this diagnosis has been conveyed and received, the experiences and feelings that followed. The study results indicate the reflecting the status differences effects and lack of proper training, professionals rarely effectively convey a Down syndrome diagnosis. Besides, it has exhibited that lack of social support and increased stigmatization confront kids with Down syndrome and their families; hence, preventing empowering adjustments and positive development that would best serve the interest of the family and the child. The results affirm that one on one care is effective in enhancing the developmental outcomes of PDS, as poor care results in increased Down syndrome behaviors among these patients (Huiracocha et al., 2017).

Health care training programs effects on People with Down syndrome

Kumalasari and Kurniawati (2018) also carried out a study to examine the effectiveness of a behavioral skills training program to enhance the personal safety skills of PDS with mild intellectual disability. The study focused on four self-protective skills comprising removing, resisting, reporting any inappropriate touch encountered and telling others. The study was conducted for more than three days. The findings illustrated that the program was effective at enhancing the PDSs safety skills because of his attaining 97% of the maximum score. Therefore, the findings sum up that behavioral skills training programs that may be conducted on one on one care basis are significant in enhancing PDSs behaviors on personal safety skills. However, to enhance the program effectiveness, it is proposed that further, in-situ training, providing reinforcements and training test for managers (Kumalasari & Kurniawati, 2018).

According to Foley et al. (2015) people with intellectual disabilities have higher chances of encountering emotional, behavioral, and psychiatric issues in comparison with the public. However, PDS has been noted to experience fewer behavioral issues than others with an intellectual disability even though at a higher level than the non-intellectually disabled people. They carried out a study to describe trajectories of behavior subscales comprising communication disturbance, depression symptoms, disruptiveness, anxiety, and social relating capabilities, for youths with Down syndrome. The findings show that youths with lower functioning reported substantively more behavioral issues in every subscale as compared to those with higher functioning. The result implies that PDS needs to have one on one care to enhance their functioning that will enhance their behaviors. However, the conduct of youths with Down syndrome enhances over time even though social relating behavior issues and depressive symptoms continue into adulthood. Hence, they are at risk of developing the depressive disease in adulthood. It can be concluded that one on one care may enhance the quality of life for PDS (Foley et al., 2015).

Conclusion

The literature review reveals that people with Down syndrome who have three or more friends or caregivers are less likely to encounter behaviors. Hence, lack of caregivers or burden of medical conditions influences negatively the quality of life for PDS. The review confirms that a patient with Down syndrome feels better when carried for in a group than in one setting as these create social inclusivity. Further, well-coordinated care systems and other support enhance the adaptability of PDS to their abilities. However, there is a need for research on the national policy on social inclusion concerning PDS. Further, studies also need to be done in developing nations as most studies are from industrialized countries on PDS.

References

Cuskelly, M. (2020). Siblings influence on the development of individuals with Down syndrome. The Oxford Handbook of Down Syndrome and Development.

Dolva, A., Kollstad, M., & Kleiven, J. (2019). Friendships and patterns of social leisure participation among Norwegian adolescents with Down syndrome. Journal of Applied Research in Intellectual Disabilities.

Driessen Mareeuw, F. A., Coppus, A. M., Delnoij, D. M., & Vries, E. (2019). Quality of health care according to people with Down syndrome, their parents and support staffA qualitative exploration. Journal of Applied Research in Intellectual Disabilities, 33(3), 496-514.

Foley, K., Bourke, J., Einfeld, S. L., Tonge, B. J., Jacoby, P., & Leonard, H. (2015). Patterns of depressive symptoms and social relating behaviors differ over time from other behavioral domains for young people with Down syndrome. Medicine, 94(19), e710.

Gandy, K. C., Castillo, H. A., Ouellette, L., Castillo, J., Lupo, P. J., Jacola, L. M., Rabin, K. R., Raghubar, K. P., & Gramatges, M. M. (2020). The relationship between chronic health conditions and cognitive deficits in children, adolescents, and young adults with Down syndrome: A systematic review. PLOS ONE, 15(9), e0239040.

Haddad, F., Bourke, J., Wong, K., & Leonard, H. (2018). An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome. PLOS ONE, 13(6), e0197394.

Huiracocha, L., Almeida, C., Huiracocha, K., Arteaga, J., Arteaga, A., & Blume, S. (2017). Parenting children with Down syndrome: Societal influences. Journal of Child Health Care, 21(4), 488-497.

Kumalasari, D., & Kurniawati, F. (2018). The effectiveness of behavioral skills training (BST) program to improve personal safety skills for Down syndrome adolescent with mild intellectual disability. Psychological Research on Urban Society, 1(2), 81.

Shields, N., Epstein, A., Jacoby, P., Kim, R., Leonard, H., Reddihough, D., Whitehouse, A., Murphy, N., & Downs, J. (2020). Modifiable child and caregiver factors that influence community participation among children with Down syndrome. Disability and Rehabilitation, 1-8.

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