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Description of the topic of Needs Assessment
Study on the needs assessment for the patients of Autism Spectrum Disorder (ASD) includes patients and caregivers of patients having moderate to severe level of ASD as a target population. Perceived needs for the target population require the healthcare providers’ education and awareness about the problem. Most of the informants and respondents of the study report that their healthcare providers often do not know the problem and its associated conditions. They often do not consider the patient and start dealing with the parents or healthcare providers. In order to fulfill the needs of the parents or healthcare providers, researchers, policy makers, and governmental organizations have to work together, especially, if the needs are to be fulfilled in the rural or remote areas of a country.
Target Population
Target population for the study included parents or caregivers of children, adolescents, and/or adults having moderate to severe level of ASD. Children, adolescents, and/or adults with ASD show challenges in social interaction, and show deficits in developing and maintaining relationships. Moreover, they show repetitive behavior and inflexible adherence to daily routines. Parents and caregivers report the presence of symptoms presently or in the past. In addition to the presence of symptoms in the target population, patients are further evaluated in terms of any recognizable genetic causes such as Rett syndrome or Fragile X syndrome and presence of medical conditions including depression, anxiety, and gastrointestinal problems.
Perceived needs
Children with ASD are among those children, who have special needs. It has become an international trend to provide healthcare services and interventions to such children. Presently, researchers and healthcare experts are working on recognizing specific areas of importance and needs for the children having ASD. Those areas may include emotional, educational, and social development. Perceived needs for the target population include clinical services as well as other supports and services. Moreover, educational needs of physicians and other related healthcare professionals, who are involved in the diagnosis as well as treatment of children and/or adults having ASD, are also important to consider.
In the U.S., the National Institute of Health (NIH) is among the most prominent agencies working on the perceived needs of children with ASD and their caregivers. NIH is working not only basic, clinical, as well as translational medical research, but it is also supporting and funding research on the causes, treatments, and needs of the patients (NIH, 2015).
Although NIH is working on the problems related to ASD, each area in the country provides different levels of healthcare services to children and adolescents with ASD. Every state has different eligibility criteria for different disabilities; therefore, the number of children having a particular disability may differ from one area to another area. For example, children with a particular problem living in the state of Utah may get different levels of benefits and supports from the Utah Department of Disabilities, whereas children living with similar problem in Texas may get fewer benefits as well as supports from the Texas Department of Disabilities on the basis of the availability of healthcare services from the State of Texas (Mccallister, 2010). Therefore, every state or area has different method or level of delivery of healthcare services, and children with ASD may face different needs and struggles in different areas.
People in rural areas are also facing the problem of accessibility to the needs, thereby requiring more work by healthcare experts and organizations to fulfill the needs of the patients living in rural or remote areas. Moreover, healthcare workers in the rural areas are also having less knowledge of the healthcare practices including the administration of effective services and instructions as well as interventions to children with ASD. Even though, knowledge has vastly expanded in the last few decades, effective instructional practices for children with ASD are still controversial as researchers, policy developers, parents, educators, advocates, attorneys, and the media do not agree on specific strategies (Mccallister, 2010).
Status of the population
Raising a child with ASD can be an overpowering experience for family members and caregivers of patients. It has been found that families having children with ASD face additional stress due to the presence of a number of different causes (Osborne & Reed, 2009). The serious and pervasive deficits sometimes found in children with ASD are related to a number of difficulties faced by parents and caregivers resulting in reduced parenting efficiency, elevated parenting stress, and an elevated level of physical and mental health problems as compared to parents of both normally developing children and children with some other developmental disorders. Moreover, financial stress as well as time pressures are among the causes leading to higher rates of divorce and decreased level of overall family well-being show the problems related to the presence of children with ASD in families. These issues in families often increase the problem by negatively affecting the diagnosed child and can diminish the positive effects of the treatment strategies (Karst & Van Hecke, 2012).
It has been found that most of the therapeutic strategies for ASD work only on the child outcomes, while completely ignoring the parents and family factors that can influence the immediate as well as long-term effects of therapy. It is also important to note that even with significant improvements in the condition of children with ASD, family and parent distress would not be reduced as the time and expense of therapeutic intervention could result in elevated and prolonged disruption in the condition of families. In a study, it has been reported that about 50% of parents having children with any developmental disability are still caring for those children by the age of about 50 years, whereas only 17% of parents or caregivers are found to be caring for their children with a developmental disability (Karst & Van Hecke, 2012). Those families need financial help in most of the cases, and there are no governmental policies to help those people whether financially or physically.
Information from informant/s
Informants say, based on their experiences, that healthcare professionals have a decreased level of knowledge about the basic signs and symptoms of the problem, i.e. ASD as well as its treatments. Informants report that healthcare professionals may also have no idea about the “spectrum” and there is lack of “one-size-fits-all” approach to ASD. Informants suggest that healthcare experts may also lack the understanding of the impact of the problem on families including parents as well as siblings of the ASD children and/or adults. Family members not only show that they are often overwhelmed by the problem and its outcomes, but they also report that they may often face challenges with a child having ASD, if other children start ignoring the problem of the child and copy his or her behaviors and disturbing his or her routine.
Respondents or Informants of the study discuss in detail some of the related conditions or features with ASD and the absence of understanding and knowledge; they face commonly in the healthcare system for the issues. Several informants say that they face issues related to toilet training, feeding, and bowel and gastrointestinal complaints. They also note the issue of depression and anxiety, particularly among adolescents as well as adults, and other commonly encountered behavioral problems for which healthcare professionals have to be informed. Some other issues or problems faced by informants include things such as children hating anyone coming close to them; children hating crowds; or children not wanting to perform a particular task. It is important to consider these problems or issues, especially, when parents or healthcare providers and children or adolescents with the problem live in or face a condition, which is crowded as, for example, a crowded waiting area to visit a physician or other healthcare providers. Some informants say that healthcare professionals are aware of these problems but other say that they are not aware.
Informants also say that waiting is a normal thing for adults but children with ASD may not understand waiting. They consider that two seconds could be just like two days. Many people do not know how to deal with such children. Some other informants suggest that healthcare professionals have to get awareness of the proper way of dealing with such pediatric patients. It is important for them to know the proper way of communication with such children including non-talking children. Sometimes, healthcare providers forget that a young patient is with them and they keep on talking with the parents while ignoring the children completely.
Informants have noted that such kinds of healthcare issues could increase the problems as, for example, if a child with ASD has a stomachache and he is unable to talk with anyone about the problem arising from bowel issues, it can result in increased level of anxiety or problematic mood. Considering these things, informants are of opinion that healthcare providers have to treat the children as a whole not just his or her ASD, and sometimes, healthcare providers do not consider this thing, i.e. physical aspects of the problem not just mental aspects have to be considered.
Several informants also talk about the use of gluten-free and casein-free diet, and use of probiotics and other such items to give a support to the disturbed digestive system.
Additional strategy for collecting information
One additional strategy for collecting information was internet search by using specific keywords. In this regard, peer-reviewed literature will be conducted using the PubMed database. The studies that are in English language and published in the last ten years will be considered. The following terms will be used and combined in different orders to refine the search results:
Autistic disorder
Physicians
Pediatrics
Social work
Occupational therapy
Nurses
Psychology
Health Professionals
Family Physicians
Autism
Along with finding the search terms, related citations in PubMed and relevant researches in Google scholar will also be considered.
General plan for data analysis
A survey-questionnaire consisting of both open and closed-ended questions helps in both the collection of data regarding the knowledge and confidence of health-care professionals and the educational needs associated with ASD (Skinner & By, 2012). Survey is performed online and the responses in the form of MS Excel sheet are transferred to the statistical software for further analysis. Similarly, targeted population is also provided with questions and the responses (data) are analyzed through statistical software. Frequency as well as cross-tab analyses are performed with quantitative data. On the other hand, qualitative data is reviewed and summarized into common themes.
After analyzing the available data, it can be concluded that the federal government has to take steps to provide appropriate healthcare services, supports, and education for children living in different areas or states of the country. Federal government can use state disability agencies to provide appropriate healthcare services to children having special needs. Those agencies have to provide proper education to healthcare providers about the treatment of a problem. Moreover, people from different parts of the country have to come together to develop action communities, support groups, as well as organizations to better deal with the problem faced by children and their families.
Concluding Remarks
Autism is an abnormal mental condition in which the patient shows communication disorders as well as short attention span and inability to deal with other people normally. This is one of the conditions included in ASD. It often burdens the life of caregivers and family members, who may start facing difficult conditions such as financial stress and time pressure. In these situations, it is important for healthcare providers to understand the needs of the patients and their family members, so that the burdens on their lives could be reduced. In order to fulfill the needs of patients and their caregivers, researchers, healthcare experts, policy makers, and governmental organizations can provide a good level of help. However, further studies are required to fulfill the needs of patients and family members, especially in remote and rural areas.
References
Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical child and family psychology review, 15(3), 247-277.
Mccallister, J. M. (2010). A Needs Assessment of Autism-Related Services and Supports in Umatilla County, Oregon: Universal-Publishers.
NIH. (2015). Autism Centers of Excellence (ACE) Program. Retrieved from https://www.nichd.nih.gov/research/supported/pages/ace.aspx
Osborne, L. A., & Reed, P. (2009). The relationship between parenting stress and behavior problems of children with autistic spectrum disorders. Exceptional Children, 76(1), 54-73.
Skinner, W., & By, C. (2012). Autism Spectrum Disorder (ASD) Provincial Needs Assessment 2012.
