Mixed-Methods Exploration of Parents’ Health Information Understanding, Article Critique Example

Introduction

This article is being written with a view to highlight the importance of identifying the dependent and independent variables in a research, the techniques as well as the strengths and limitations relevant to the data collection process, the different aspects of the analysis of the results obtained, the attention paid to the human rights acts by researchers and the strengths and weakness with respect to the protection provided for each act.

At the end of the process the impact of these factors will be used as a basis to synthesize acceptable and valid conclusions and or summaries concerning research on a general basis going forward

Dependent and Independent Variables

The variables relevant to this study are the different care giving groups, the demographic backgrounds and health care levels as they relate to children health care, health care procedures and research consents requirements.

In terms of the literacy levels for both English and Spanish speaking groups, there is a dependence relationship that is based on the respective language, culture, experience, grade levels achieved and learning orientations, while the research variables like the health care procedures, children health care, research consents requirements and the STOFHLA Testing equipment for both languages are independent of the group to which they are used in.

The Data Collection Process

The researchers carried out quantitative and qualitative data collection operations in which care givers and parents were, (a) asked to provide answers to demographic informational questions within\set time periods without external assistance, (b), participate in Field Group (F/G) study or individual interviews and then (c).submit themselves to the STOFHLA  testing procedure.

In order to ensure accuracy in the measurement process, some participants were allowed to participate only once in the interview stage which was a face to face exercise involving the use of open ended questions, while another sample was place in the F/G grouping to facilitate the gathering of unique and vital data via group dynamics.

The researcher conducted 4 F/G’s over a 12 month period and recruited care givers one week after each event through the efforts of the primary investigators working with a specific sample size (n=32)

Strengths and Limitations of the Data Collection Process

The data collection process that ensures care givers could only participate once at them face to face interview stage as well as the early recruitment drives that follow each F/G should be seen a sources of strengths in that that they enable greater accuracy in the measurement of the health literacy levels of the participants, by minimizing the effects a secondary exposure would cause.

Additionally, the information extracted from the F/G also served to strengthen the validity of the conclusions that would be made about the health literacy of the care givers, due to the higher level of participation that often results from group dynamics.

A weakness of the F/G aspects of the data collection process was the fact that there were no control on the group type, gender and educational standard at any time during the entire twelve months, and the researchers made no mention about using the information from other periods to help authenticate the research data.

Variations in that data over a one year period only may negatively impact on the health literacy levels of care givers.

The Outcome Measure for the Study

Research question number 1 was adequately answered in terms of the age, gender, educational grade standard achieved, health literacy scores and STOFHL rating, despite the significant gap in the grade of education levels between both groups.

Strong reliability evidence were also obtained using the Kuder-Richardson-20 for both English and Spanish versions of the STOFHLA test, with the former determined at 0.95m compare to 0.97 for the latter.

The answer for research question number 2 was answered from the quantitative data extracted during the research. A significant difference in the level of understanding between both groups were detected, with the  ESOP care givers understanding well after watching and then doing, compare to the SSOP group, which the researchers found understood through explaining and watching and then allowed to perform.

It could be argued that then educational level was the major contributing factor between both groups, in that the SSOP group because of its lower standard; were found to be worried, angry and scared more often during the time the health care personnel were talking and explaining process than the care givers on the ESOP team.

The question as to whether the demographics or health literacy scores reflected the care giver understanding of health information was answered principally from the interviews the PI conducted with the care givers selected for this stage of the process.

Although it was discover that both groups learnt differently, the problem was compounded by the fact that many of the SSOP members tested at the lowest health literacy level during the interviewing stage, while others had significantly higher scores at the both the F/G and STOFHLA stage.

Researchers therefore had to avoid generalizations when analyzing the data from the interview stage as variation reduces the effectiveness of the process to adequately provide the answers needed.

A major source of strength for the outcome measure during the research was the opportunity the researchers had to use both quantitative and qualitative data analytical tools on all three data collection phases, then being positioned to compare and ascribe differences to specific areas, before making conclusions and recommendations regarding future applications.

However, the process was always going to be limited in scope due to the variation in the literacy level across the group, and the inability of the researchers to use the same analytical tools at all three levels.

Human Rights

According to Butt (2012), the HIPAA 1996 rule allows a covered entity like a hospital or health care institution to disclose Protected Health Information for research under the following conditions, (a) there be proper authorization, (b) a waiver of authorization be granted, (c), de-identified clause is present, (d) a data use agreement is established, (e) decadence is operable, (f) and grand-fathering.

Authorization refers to the existence of documentary evidence that confirms a particular institution is permitted to use or disclose health information of any patient or group of patients for specific research or other legal purposes (Partners Human Resource Research Committee, 2012).

In terms of waiver of authorization, this is defined as a waiver given to a researcher by the IRB, authorizing use of specific health information, after its application has met the given criteria.

De-identified is the process whereby experts analyze data under the HIPAA 1996 rule to determine the risk involving the use of health information is justified, and there is no reference that could lead to the identification of   individuals whose privacy should be protected.

Every research organization has to be knowledgeable about data use agreement, which is a satisfactory assurance between it and a covered entity that the use of limited data will be only for specific purposes or disclosures.

Finally, decedents which deals with deceased persons, is the affording of coverage tom these entities under HIPAA1996  rule, even though they are not considered human subjects under the common rule (Partners Human Research Committee, 2012).

Data Use Agreement and Authorization

These two human rights acts were adequately provided by the researcher Lehna and McNeil (2008), as they timely issue recruitment fliers during the surgery and caring process and this enable those recruited to fill out consent forms authorizing the research to use the medical information for the specific purpose intended.

The presence and use of the consent forms by both care giving groups reflected an area of strength on the part of the research team, in that it was able to use the authorization document to protect itself from possible law suits as well as means for preventing any violation of the human rights of participants involved in the study.

The process was limited with respect to care givers who because of their illiteracy, may quickly accept the invitations of the research team or avoid participation by refusing to take part.   In the case of the former, they may surrender their rights by signing the form without any legal advice, while the latter may deprive themselves of the rights under HIPAA 1996, because of their failure to participate in the study, which may involve serious violations under the data use agreement at a later date.

There are two ways participants could have their human rights protected in a case where the research team had made no provisions, as it relate to the signing of the consent forms. Firstly, they should consult their lawyers before signing these forms, so that that would have a legal counsel from lawyers with a similar cultural and ethnic background, and lastly, they should retain copies of these forms to ensure they have evidence to present, should lawsuits arise in the future.

Conclusions

Data collection is a critical part of any research study, and as such must have some levels of diversity and flexibility in the designing phase of the plan to capture the variations that may exist among the dependent and independent variables, especially from a cultural, language and educational perspective.

Knowledge of the dependent and independent variables involved in any research process is vital for researchers, as it enable them to successfully develop their hypothetical frames of reference as early as possible, so that at the analytical stage, the results would justify the questions that were asked during the data collection process.

The HIPAA 1996 privacy rules are often known only to researchers, but when they are in place, protection of the human rights of participants are always secure, especially when there are violations and legal actions has to be taken.

Researchers therefore that place emphasis on these important parameters at all stage of the process will no doubt be able to justify the time and finance input as well as the final results achieved at the end of the study.

Reference

Butts, H., (2012). HIPAA Privacy Power Current Issues in Research Ethics privacy and Confidentiality Retrieved from www.ccnmti.columbia.edu/projects/CIRE/pac/foundation/#1_1 on 09/02/12

Partners Human Research Committee (2012). Glossary of Common Terms HIPAA 1996 Retrieved from www.helathcarepartners.org/phsircb/hipaaglos.htm , on 09/03/12