The study by Hudson, Macdonald and Blake (2016) seeks to address the issues of packing and problematic feeding behaviors in individuals (particularly children) with CHARGE syndrome. While holding food without swallowing is an adverse event researched and described for autism and Down syndrome, it has not been addressed for CHARGE syndrome. This genetic disorder results in significant feeding challenges, otorhinolaryngological problems, and instances of tube feeding that require more in-depth research.
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The study’s purpose is to investigate the negative consequences of packing and feeding difficulties associated with CHARGE syndrome that have little to no scholarly literature on the topic. The study’s objective is to comprehend and describe these problematic feeding behaviors by gathering information from primary sources. By interviewing parents of children with CHARGE syndrome, researchers hope to gain an introspective on the severity and scope of the issue. The study lacked a literature review other than introducing the issue with supporting statistical information about otorhinolaryngological and feeding issues in CHARGE syndrome. The study did not identify a theoretical or conceptual framework since it stated that there was practically no research done on the specific topic. However, this does not detract from the significance of the study in laying out foundations for research and critical aspects of the issue. The authors discuss future directions for research and possible areas of exploration.
The authors used a qualitative research design by conducting semi-structured interviews with parents of children diagnosed with CHARGE syndrome either through genetic testing or clinical criteria. The research tradition was not identified. However, it can be inferred that the study follows the action research tradition developed by Kurt Lewin, which seeks to employ a form of collective inquiry in social situations with the purpose of identifying practical issues, often through the use of observation and interviews.
The use of interview protocol as the primary research design does fit the study’s purpose since it helps to identify the experiences and viewpoints of the participants. Feeding issues are not easily observed in clinical settings but are common in home settings. Therefore, semi-structured interviews are a competent method of in-depth research for this purpose by providing researchers with a well-rounded collection of information on the topic from primary sources. An improvement could have been made to the research design by introducing observation alongside interviews. This allows verifying the responses as well as draw comparisons. It is common in research that parents, who are not medical professionals, either fail to notice or exaggerate the description of children’s behavior. Therefore, while the design does adhere to the research tradition and fits with the overall purpose of the study, it could be improved to ensure greater validity and quality of collected information.
The article clearly described the process which was used to perform the data. However, there was no indication of whose approach was used. The study explicitly stated that interviews were analyzed using qualitative content analysis for open-ended inquiries and descriptive analysis for close-ended questions. Continuous variables were expressed through the use of mean and standard deviation, while categorical variables through the use of frequency and percentages. This type of data analysis approaches the topic from a thematic content analysis while introducing statistics and patterns which can be used to categorize the data. Since the study does not require complex interpretation at the theoretical or phenomenological research, content analysis is appropriate for low-level interpretations. It helps to create a narrative and analyze the descriptions of a specific event or environment. Overall, the authors provided an adequate description of analysis methods which are fitting within the range of the research problem and design.
Content categories were created upon review of open-ended questions. Furthermore, the data was coded based on these categories, and responses were summed. Computer programs were used for categorical (MAXQDA) and statistical (SPSS) analysis while an independent coder reviewed the coding and content categories. Data were displayed in tables that were properly labeled and categorized. Furthermore, the descriptive qualitative information was divided up into sections based on category or characteristics, which combined a brief summary of the responses, features, and statistics.
Data were displayed in a manner that was which could be easily followed along with the researcher’s conclusions and discussions. The category schemes were logical and appropriate for the topic, split into specific aspects related to CHARGE syndrome feeding practices. There was no noticeable redundancy as each category was independently unique and relevant to the discussed issue that justified its interview questions and results. It was noted that because the study is qualitative and interview-based, it represented the viewpoints of the parent participants, which may differ from quantitative or consequent studies.
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Reported Findings and Interpretation
The analysis presented a comprehensive and detailed overview of the central topic of the study. It was a comprehensive and meaningful approach, which sought to consider the major challenges faced by feeding practices in children with CHARGE. Aspects ranging from physiological difficulties to mental and emotional challenges were addressed. Since the study directly explores parent perspectives, it offers very detailed insight into the emotional and psychological aspects of the issue and the social impacts that the feeding behaviors have on children with CHARGE syndrome.
The researchers specifically identified several themes associated with feeding in CHARGE symptoms. These were supported by data tables that outlined percentages and frequencies of the sample that exemplified or were covered by themes. It included syndrome features, characteristics of feeding, types of medical feeding, employed therapies, and interventions used by parents to reduce packing or adverse behaviors. The themes were identified, outlined, and explained by the authors. Furthermore, all themes were connected to show how one might impact the other.
The study followed standard ethical considerations. Approval was received from a specialized research center ethics committee. Participants were invited through specific CHARGE syndrome organizations to ensure eligibility criteria. Furthermore, informed consent was obtained from parent participants before conducting the interviews.
The report addressed its limitations in a short section of the paper. It identified that basing research on parent recall may create bias or the possibility of error. Furthermore, the sample size was relatively small. Researchers noted that data saturation as possible. Results also presented an extensive range of feeding issues, from mild to severe difficulties, which may create certain barriers to focusing on the type and prevalence of these symptoms. The authors addressed all evident and appropriate limitations to this type of research design and sample.
Quality and Validity
The limitations do not significantly impact the validity or credibility of the results and research. The authors continuously compare research to previous similar studies that could be related to the topic. Although little research has been done, the authors note that the results are similar, which indicates that the sample was an adequate representation of the population. To ensure replicability, the researchers describe the details of the experiment design and data analysis.
The trustworthiness of the study is established by focusing on credibility and reliability. Researchers worked with CHARGE syndrome organizations and used purposive sampling techniques. Furthermore, the transferability of the data is discussed within a wide variety of contexts of CHARGE syndrome research, diagnosis, and treatment. Triangulation was used through a semi-structured interview method that allowed to ask study participants the same set of questions. All these strengths and strategies were used by researchers to the full extent based on the possibilities of the research design. It is important to note that based on the authors’ claims, little previous research has been done on the topic, which creates challenges to establishing credibility in such qualitative studies. However, the authors used integrity and established trustworthiness through their methods, discussion, and approaches to the research.
Practicality and Applicability
The study provides a wide range of themes and topics which can be explored in relation to CHARGE syndrome and associated feeding difficulties. It implies that the in-depth interview process has created a more comprehensive and well-rounded perspective on problematic feeding behaviors. This information can be used in clinical settings by pediatric otorhinolaryngologists to develop appropriate therapy and treatment. The data is also helpful to portray the overall feeding experience and health issues that may arise due to CHARGE syndrome that will be critical to informing evaluations and interventions to prevent adverse outcomes.
Hudson, A., Macdonald, M., & Blake, K. (2016). Packing and problematic feeding behaviors in CHARGE Syndrome: A qualitative analysis. International Journal of Pediatric Otorhinolaryngology, 82, 107-115. Web.