NU 629 Discussion 1: Pros and Cons to Delivering Community-Based Participatory Care to Those Who Are Vulnerable

Sample Answer for NU 629 Discussion 1: Pros and Cons to Delivering Community-Based Participatory Care to Those Who Are Vulnerable Included After Question

The vulnerable population I chose in week 1 is non-verbal children. Today, there are many resources available for non-verbal children. They include parents, teachers, pediatricians, and speech language pathologists to name a few. They all benefit non-verbal children’s health and development. Non-verbal children, specifically those with autism spectrum disorder (ASD), can develop many health problems. Children with ASD have a difficult time understanding and developing language and communication skills (“Autism spectrum disorder: Communication problems in children”, 2020).

They are also more prone to epilepsy, mental health conditions, other behavioral and genetic disorders, difficulty sleeping, feeding issues, gastrointestinal disorders, cardiovascular disorders, higher risk of early parkinsonism, and they have a shorter life expectancy (Bishop-Fitzpatrick & Kind, 2018). The earlier children are diagnosed with autism, the sooner interventions can be started and the sooner other health conditions can be assessed. Because young children are resilient, there is a greater chance of those who have a milder diagnosis of autism to develop excellent communication and everyday life skills.

There are many beliefs about non-verbal children, especially about those who have autism, as to what it is the result of. Different cultures also have their own beliefs about non-verbal children, therefore it is important to gain an understanding of parents’ beliefs about the condition. Many families believe there is a genetic component to autism, and a few still believe that immunizations are to blame for this even though that has been proven to not be true (Samadi, 2020). Children who are autistic are more prone to behaviors that can put them at risk. Some autistic children tend to bang their head against walls or objects, some bite, and some are clumsy, making them more prone to falls (“Autism spectrum disorder”, 2018).

Autisitc children are also likely to experience light, sound, and touch sensitivities (“Autism spectrum disorder”, 2018). They also may be indifferent to changes in temperatures and pain (“Autism spectrum disorder”, 2018). This can be scary for patients because if their child is in pain, they may not know since their child can’t feel it and the same can be true about body temperature changes. As mentioned before, autistic children can have feeding issues due to textures of food which can result in malnutrition if a child is extremely picky (“Autism spectrum disorder”, 2018).

Though non-verbal children have a difficult time communicating with others, they still long for that communication just as another child or person does. It is important that non-verbal children take part in extracurriculars to help them develop better socialization skills (“Community and social participation”, n.d.). Children with high-functioning autism would be more likely to participate in a Community-Based Participatory Research health promotion project, however it is important to include all children with autism regardless of their stage of diagnosis. By including all children with autism, they will be able to speak up for themselves and for what changes they would like to see. Members of this project would be able to learn how to communicate with non-verbal children and thus would be able to spread this knowledge with others.

References

Autism spectrum disorder: Communication problems in children. National Institute of Deafness and Other Communication Disorders. (2020, April 13). Retrieved September 20, 2021, from https://www.nidcd.nih.gov/health/autism-spectrum-disorder-communication-problems-children.

Autism spectrum disorder. Mayo Clinic. (2018, January 6). Retrieved September 20, 2021, from https://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/symptoms-causes/syc-20352928.

Bishop-Fitzpatrick, L., & Kind, A. J. H. (2018, November 1). A scoping review of health disparities in autism spectrum disorder. NCBI. Retrieved September 20, 2021, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5693721/.

Community and social participation. Drexel University. (n.d.). Retrieved September 20, 2021, from https://drexel.edu/autismoutcomes/topics/community-and-social-participation/.

Samadi, S. A. (2020, February). Parental beliefs and feelings about autism spectrum disorder in Iran. NCBI. Retrieved September 20, 2021, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7038212/.

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A Sample Answer 2 For the Assignment: NU 629 Discussion 1: Pros and Cons to Delivering Community-Based Participatory Care to Those Who Are Vulnerable

Title: NU 629 Discussion 1: Pros and Cons to Delivering Community-Based Participatory Care to Those Who Are Vulnerable

Thank you for your topic and input this week. As you noted within your discussion post, non-verbal children often have concurrent medical, psychiatric, psychological, and developmental diseases and disorders that contribute to their inability to verbally communicate. Disorders such as encephalopathy, hydrocephalus, intellectual disability, or other associated cognitive delay or cognitive processing disorders can contribute to a non-verbal or minimally verbal deficit within children.  One of the most prevalent etiologies are Autism Spectrum Disorders (ASD). Approximately one-third of children diagnosed with ASD will remain non-verbal or minimally-verbal through their lifetime, regardless of interventions. Consequentially, behavior, socialization, academics, the ability to live independently, and employment can be effected (Koegel et al., 2020).

The National Institutes of Health [NIH] (2016), provide guidelines specific to research conduct. According to NIH ethical research requires fair selection of research subjects with a favorable risk to benefit ration, informed consent, and respect for potential and enrolled subjects to name a few. There is a priority to place consideration into the burden of risk to the participants. The exposure of the research should not produce harm to the participants. The risk to the research group must be minimized, so that the participants benefit from the research, with consideration of long-term effects.

Subjects should be inclusive to the group being studied, and not prioritize participants by ethnicity, culture, race, sex, sexual orientation, religion, creed, or other factor. Within the vulnerable population of non-verbal children, consent is dependent on the parents of the children participating within the research study. The research must consider the benefit of the children for either the greater knowledge development from the study to gain knowledge, or to directly help the children within the study. Specifically, it is unethical to withhold treatment to a child if the treatment may effect their ability to have a greater quality of life.

According to Daley et al. (2013), Low- and middle-income countries have has unique ethical issues for children with ASD. There is a prevalence of 75 of 120 countries with ASD organizations that exist within the low- or middle-income classification. Therefore, as the growth of ASD research grows and is incorporated within these areas there are concerns regarding the research efficacy with cultural and ethical treatment for children. In the United States, the ethical conduct of research has been based off the of recommendations of the Belmont Report. International guidelines also include the Council for International Organizations of Medial Sciences, the Declaration of Helsinki, and amalgams of other documents to create their own ethical research considerations. Therefore, it is important to consider the local integration of research ethics within a country, and the socioeconomical or political implications within the parents participation in ASD research. These factors may either inhibit, or promote participation by parents with their consent under pretenses of external influences out of the researcher’s control.

For parents with non-verbal children with ASD, one of the primary motives may be to facilitate teaching of communication strategies to parents. The ability of parents to communicate with their children, and be enabled to learn coping strategies may be the best incentive to participate. Additionally, basic physiological resources, such as food, shelter, money, safety and security can also have great influence in participation. However, education can be the greatest gift for a struggling family.

Thank you for your post

References

Daley, T. C., Singhal, N., & Krishnamurthy, V. (2013). Ethical considerations in conducting research on autism spectrum disorders in low and middle income countries. Journal of Autism and Developmental Disorders, 43(9), 2002–2014. https://doi.org/10.1007/s10803-012-1750-2

Koegel, L., Bryan, K. M., Su, P. L., Vaidya, M., & Camarata, S. (2020). Definitions of nonverbal and minimally verbal in research for autism: A systematic review of the literature. Journal of Autism and Developmental Disorders, 50(8), 2957–2972. https://doi.org/10.1007/s10803-020-04402-w

National Institutes of Health. (2016, March 16). Guiding principles for ethical research. National Institutes of Health (NIH). https://www.nih.gov/health-information/nih-clinical-research-trials-you/guiding-principles-ethical-research