Collaborative Care For Children With Down Syndrome

Introduction:

Down syndrome is one of the most common genetic disease affecting all countries, races and both sexes. The risk factors for Down syndrome include both genetic and environmental factors (Asim, Kumar, Muthuswamy, Jain, Agarwal, 2015). The incidence of Down syndrome is expected to be significantly high in developing countries due to the higher death rate from comorbidities, such as congenital cardiovascular defects.  According to World Health Organisation, the prevalence of Down syndrome is 1 in 1000 live births all over the world (Pikora, Bourke, BathgateFoley, Lennox, & Leonard, 2014). The quality of relationship among family members, social environment and awareness affects the development of children with Down syndrome (Asim, et al., 2015). In recent years, children with Down syndrome are showing better improvement in their condition and are able to achieve much more than the children who suffered from Down syndrome in the past 25 years ago. Children with Down syndrome who actively participate in social activities with their normal and healthy peers at their school and in the community show greater age-appropriate behaviour maturity than those children who interact with peers having disabilities. Several policies support the children with Down syndrome and their families by providing dedicated information, referral service, peer to peer support to the families and workshops to the family members and professionals caring for patients with Down syndrome (Asim, et al., 2015). A detailed discussion of the developmental challenges faced by children with Down syndrome, policies, and the role of collaborative care will be discussed in the present essay. 

Down syndrome is caused by nondisjunction during cell division in an extra chromosome 21 (Trisomy 21). Unique craniofacial structure, brachycephalic, short neck, congenital heart defects, muscular hypotonia, upper and lower extremity anomalies and hyper musculoskeletal flexibility are some of the common physical features associated with Down Syndrome (Asim, et al., 2015). Congenital heart disease is reported in nearly 50% of children with Down syndrome (Pikora, et al., 2014). Therefore, a physical examination is recommended during the neonatal period to heart-related issues. Children with Down syndrome face challenges in the development of language, communication, social and emotional skills, gross motor and fine motor skills (Pikora, et al., 2014). Children with Down syndrome have low intelligence Quotient resulting in mild to moderate cognitive impairment. Children with Down syndrome exhibit a wide variation in their personality. Few children are extrovert, friendly and sociable, while few are introvert and shy (Pikora, et al., 2014). Few children are most often calm, while some are nerve-racking and demanding. Some children are flexible; they adjust and adapt to the changes, while some experience difficulty in adjusting to the changes and may have the risk of developing obsessional behaviours. Some children are cooperative and can be easily managed at home and school, while some are very fussy and are difficult to manage. The motives for these differences are partially inspired through genetic makeup and partially by means of the manner parents, instructors are caregivers assist the child in adapting to the needs of development (Pikora, et al., 2014).  Few children with Down syndrome may have medical complications such as seizures or developmental problems such as autistic spectrum disorders and attention deficit or hyperactivity disorder (Pikora, et al., 2014). 

Several families accustom well to having a child with learning difficulties. However, few experience social or emotional difficulties. They experience a social, mental and economic burden of the child's care and rehabilitation (Mitchell, Hauser-Cram, & Crossman, 2015, p. 509). Maternal depression is one of the common problems encountered by nurses while caring for a child with Down syndrome. The developmental outcomes of the child get compromised with maternal depression, so the nurse should provide counselling to the parents (Sterling, & Warren, 2014, p.309). Financial difficulties are common as one parent may need to stop outside employment and care for the child. Referral to community resources is necessary to meet a multitude of needs. Physical, occupational, speech and developmental therapy should be provided to the child. Parent support groups can be helpful, whether formal or informal (Harrison, 2010, p.336). Parents are comforted when they can interact with another family who has undertaken the care of children with special needs. The nurses should make efforts to links these families if desired. Internet support groups are a valuable resource for parents who are unable or unwilling to leave their child to attend group meetings. Good quality respite services serve the greatest needs of the family, having a disabled child (Skotko, Levine, & Goldstein, 2011, p. 2336). Respite services include overnight stay facilities, leisure facilities, and holiday play schemes. These services provide an opportunity for families to manage a very dependent child or severe illness. A recent study suggested that parents and caretakers of children with Down syndrome identified respite care and social or leisure as a most required opportunity for themselves and their children with Down syndrome most needed (McLennan, Doig, Rasmussen, Hutcheon, & Urichuk, 2012, p.263) In the given case study, the family members are experiencing emotional burden as Tom’s elder brother will be attending the local secondary school next year. Therefore, family counselling, parent support groups, respite care and home health services should be recommended to lower family stress.