Respecting Autonomy, Privacy, and Information in Maternity Care: A Study of Midwifery Personnel in Mashhad University of Medical Sciences (2022)

1. INTRODUCTION

Patient autonomy is one of the main elements of a patient monitoring system, an ethical principle that has become a foundational concept in recent decades [1]. Medicine was a patriarchal practice until the middle of the 20th century. As technology developed and treatment options increased, paternal communication became less valid [2]. However, this idea that patients are persons and not objects challenged the paternalistic relationship and the belief of health professionals that they alone can determine the appropriate outcome for patients [2]. An individual's autonomy is the ability to make informed or rational decisions for themselves [3] based on the information provided by nurses and doctors and to defend themselves if necessary [4]. The results of the studies indicate that paying attention to the patient's independence is associated with positive consequences such as increasing the patient's self-confidence, effective communication with health service providers, and feeling more satisfied with the services received [1, 5]. Some criticize the patient's autonomy and believe that the doctor has an obligation to provide the best solution. Even with technical competence, patients may make irrational and unwise choices. For example, refusing treatment due to adverse effects [6].

The results of the study by Cabete et al. (2011) showed that the patient's understanding of himself and the conditions based on his culture, the psychological ability to adjust the choices, and the availability of opportunities for the patient are the three factors that determine the patient's autonomy in healthcare environments [1]. Also, Ireen et al.'s study showed that self-determination, independence, and care-self are three dimensions of patient independence in healthcare environments. Self-determination is a free choice and decision about one's life and health. Independence is characterized by physical, psychological, and social components related to planning and organizing life, social roles and relationships, and responsibility for one's own life and health care. Self-care includes skills (movement, communication, cognition) and daily life activities necessary for functioning [7].

Several studies have presented patient autonomy as an ethical challenge [8]. For health professionals, advancing individual autonomy instead of assuming the right to choose can pose a challenge. There are also times when patients and professionals have different understandings. In some cases, passive patients assume that health professionals should make decisions on their behalf. In contrast, health professionals do not sufficiently assess patients' needs and abilities, nor do they encourage them to make informed decisions [1].

Healthcare providers often neglect or fail to understand patients' basic rights [9]. The importance of sharing information about health, the Rights of patients, and joint decision-making is recognized by service providers. However, due to the dangers patients face, they are harassed and excluded from decision-making, increasing passive communication and dependency [2].

Respecting the patient's autonomy means involving them in the decisions to be taken for them [10]. In order to respect the autonomy of the patient, the doctor and nurse should allow the patient to maintain their characteristics, values and identity regardless of medical values. The doctor and the nurse help the patient understand the treatment's nature, scope and possible consequences. As a result, the patient can make a decision based on the information he understands. The doctor and nurse are responsible for continuing to provide information and to assess the patient's understanding of the information. In this way, the moral obligation to respect the patient's independence is ensured [11].

According to patients participating in a study, the most stressful things during hospitalization were change of habits, lack of control, lack of autonomy, and loneliness [8]. Another study conducted in Iran found that patients did not feel their individual autonomy was respected [12]. In order to respect the individual autonomy of the patient, privacy, secrets, and information must also be protected. Hence, maintaining privacy and adhering to it is essential for establishing trust between patients and health service providers [13]. No evidence supports the claim that privacy, secrets, and patient information come from specific knowledge. These terms are often used in a range of sciences, including medical ethics [14]. The patient's privacy and secrets can be viewed as a means of living according to their own tastes. Individuals are expected to keep their personal and confidential information private within the scope of privacy [15].

Privacy means limiting the access of others to a person's body or thoughts and feelings. On the other hand, privacy has a very close relationship with normative values and is something that people usually want to preserve, protect and control. Therefore, sometimes private privacy cannot be distinguished from the right to have private privacy. In law and ethics, privacy usually refers to the right to have privacy plus limited access, and in the law, private privacy is mixed with violation by third parties or the government [16].

Preserving people's private privacy has different dimensions; some experts divide it into physical, psychological, social and information dimensions [17]. Due to the importance of privacy, some governments have enacted laws in the past decades to protect people's privacy, including privacy laws in Canada and other developed countries. These laws have played an important role in promoting awareness and respect for privacy among medical researchers [18].

It is very important to respect personal privacy in creating an effective relationship between the treatment staff and the patient, maintaining the peace and satisfaction of the patients. Despite the importance of this issue, when a person is admitted to the hospital, he is not always able to control his personal privacy, and his privacy is violated during hospitalization in various treatment situations by the treatment staff for various reasons [19]. The consequences of violating the patient's privacy are many and sometimes unpleasant; some patients keep parts of their history hidden and refuse to perform parts of their physical examination due to the concern of violating their privacy [20]. Failure to observe personal privacy increases anxiety and stress, and provokes aggressive and violent behavior in people [21].

The results of the studies indicate that many reasons lead to a feeling of disrespect to the patient's privacy during the examination, including nudity before the doctor starts the examination, nudity in the presence of the medical team members, and nudity of parts of the patient's body that to medical examination are not relevant. Also, raising questions about the physical appearance and gender incompatibility of the patient with the treatment team members is considered as disrespecting the patients' privacy. Overall, the results support a multi-faceted and multi-situational nature of privacy. In this way, contrary to the usual concept that sees privacy as an issue focused on the patient's information, privacy is an issue with dual psychological and informational aspects [18, 21].

Patients need to be able to trust their health service providers, and this trust is based on respect for individual autonomy, privacy, secrets and information, which play an imperative role in the relationship between the patient and the provider. In medical science, the category of secrets and patient information between health service providers and patients is one of the most fundamental ethical issues. Such a Sharia-legal and medical norm is known as one of the basic human rights [22]. Based on Sharia themes and principles, respect for patient's secrets and information is one of the basic and obvious principles [23]. The results of Mansoori et al.'s study showed that the level of awareness of patients referring to treatment environments about the charter of patient rights and categories such as privacy and keeping secrets and patient information is weak [24].

Health service providers must be confidential about the secrets and information of the patient due to the oath they have taken in such a way that keeping the secrets and information of the patient and not disclosing it is obligatory on the health service providers. Therefore, keeping secrets and patient information is a basic rule in the relationship between health service providers and the patient, which provides individual and social benefits to the patient [25]. How can we claim that the health system works in patients' most beneficial interests if they are afraid of visiting medical facilities [26]? In this context, we can mention the special position of mothers and babies in the healthcare system. Mothers and babies should benefit from comprehensive health services that respect their individual autonomy, privacy, secrets, and information.

Currently, the issue of respecting the personal autonomy, privacy, secrets, and information of mother and baby is a mystery that is not governed by specific laws, and this can cause serious harm to this vulnerable group. Due to this legal gap, ethical activists in the medical field may be hindered in their efforts. It is true that currently, the compilation and implementation of an ethical guide based on the provisions of the patient's bill of rights can be effective to some extent in solving this problem, but in any case, in addition to the compilation of the guide, it is also imperative to implement and apply this principle in providing care to the mother and the baby. Since midwifery personnel are at the forefront of providing services to mothers and babies, they can serve as a documented model with respect for individual autonomy, privacy, secrets and information of mothers and babies in providing health services to them. Therefore, this research was conducted and implemented to determine the status of respect for individual autonomy, privacy, secrets, and information of mother and baby from the point of view of midwifery personnel working in public hospitals of Mashhad University of Medical Sciences in 2022.

2. MATERIALS AND METHODS

This research is a cross-sectional descriptive study. Its purpose is to determine the status of respect for individual autonomy, privacy, secrets and information of mother and baby from the point of view of midwifery personnel working in public hospitals of Mashhad University of Medical Sciences in the autumn of 2022. The statistical population of the research was all midwifery personnel working in public hospitals with obstetrics and gynecology expertise at Mashhad University of Medical Sciences, who were selected and included in the study by available sampling methods.

The sample size was calculated according to the size of the studied population. By using Cochran's formula and the error of 5%, 221 people were calculated. Inclusion criteria for this study included consent to participate, at least 1 year of work experience, and access to a smartmobile phone to receive the electronic questionnaire link. Exclusion criteria included incomplete completion of the questionnaire.

As a result of Mashhad University of Medical Sciences approving the study plan and obtaining the ethical code, the researcher received a written introduction letter from the university and presented it to the relevant hospital officials. In order to investigate the level of respect for individual autonomy, privacy, secrets, and information of mothers and babies, a researcher-made questionnaire was used to collect data. All midwives were provided with the link to this electronic questionnaire, which was prepared electronically. It was requested that the contact person of the research project in each hospital, who was in charge of the maternity hospital, provide the link to the midwifery personnel for completing the questionnaire. The questionnaire consists of two parts. As part of the first part, demographic information about midwives (age, education, marital status, work experience, employment status) is included, while as part of the second part, questions are asked regarding the mother's autonomy, and questions are asked regarding her privacy, secrets, and information. In order to promote natural childbirth and safe birth, this questionnaire was developed based on similar studies and library reviews.

There are 15 statements and three components in the questionnaire, including statements about the mother's autonomy (statements 1, 3, 4, 6, 7), mother's privacy (5, 10, 11, 12, 13) and mother and baby secrets and information (2, 8, 9, 14, 15). The questionnaire was scored on a Likert scale ranging from completely disagree (score 1) to completely agree (score 5). For each component, the total score is derived from the sum of the statements related to that component divided by the number of its statements. For the questionnaire, the total score is derived from the sum of the statements of the questionnaire divided by 15. Accordingly, the overall score of the questionnaire and the score for each component will be between 1 and 5, where a score of 3 is considered average. Six experts reviewed and confirmed the validity of the questionnaire developed by the researcher. Also, the validity of this questionnaire was estimated at 0.78 by the factor analysis method. The Cronbach's alpha coefficient for the questionnaire was 0.83, which indicates adequate reliability. As a result, the questionnaire is reliable.

In the present study, ethical considerations were: first, all participants participated voluntarily and willingly, and second, regarding the principles of secrecy and confidentiality of participants' identity, they were assured that all information would remain confidential and the results would be generally reported to the public. Data were analyzed using SPSS version 22 statistical software, one-sample t, independent t, one-way analysis of variance, Tukey's post hoc, and Pearson's correlation coefficient at a significance level of p<0.05.

3. RESULTS

This research examined 243 midwifery personnel working in public hospitals of Mashhad University of Medical Sciences with an average age of 35.00±5.02 years (minimum age 24 years and maximum age 42 years). The highest frequency is related to married personnel (120 people, 49.4%), with 5-10 years of service (163 people, 67.1%), with planned employment status (112 people, 46.1%) and bachelor's level of education. (216 people, 88.9%) (Table 1).

Considering that the skewness and kurtosis coefficients for all research variables are in the range [2, 2], the research data have a normal distribution. The results of the one-sample t-test showed that the mean score of respect for individual autonomy (3.39±0.21), privacy protection (3.64±0.27), secrets and information of mother and baby (71.0±0.26) 3) From the point of view of midwifery personnel, it is significantly higher than the average theoretical score (3) (p<0.001). In other words, it is concluded that from the point of view of the midwifery personnel under investigation, the level of respect for individual autonomy, privacy, secrets and information of mother and baby is average (Table 2).

The results showed that the average score of the opinion about respect for individual autonomy in married personnel compared to single and the average score of opinion about privacy protection in single and separated personnel is significantly higher than married personnel (p<0.05), but the average There was no significant difference in the score of the personnel's opinion regarding the secrets and information of the mother and the baby according to the marital status (p=0.06). The average score of privacy, secrets, and information about the mother and baby was higher (p<0.05) among staff with 5-10 years of service than those with more than 10 years (p=0.34). However, according to service history, there was no significant difference regarding respect for individual autonomy. Based on the obtained results, the average score of the opinion regarding respect for individual independence, privacy, secrets and information of mother and baby was significantly higher in conscript personnel than in contract and official personnel. Also, the average score of the opinion regarding respect for individual autonomy in official personnel was significantly higher than in contract personnel (p<0.001). The average score of the opinion regarding respect for individual autonomy was significantly higher in personnel with master's education (p = 0.02). However, the average score of the opinion regarding protecting mother and baby's privacy and secrets was not significantly different (p>0.05) (Table 3).

4. DISCUSSION

Patients should be in a position to trust health service providers. This trust results from respect for individual autonomy, privacy, secrets and patient information, which plays an important role in the relationship between the health service provider and the patient. Thus, we can mention the importance of mother and baby receiving health services in a healthcare system. Mothers and babies should receive comprehensive health care that respects their individual autonomy, privacy, and secrets and information. The present study was designed and implemented to determine the status of respect for individual autonomy, privacy, secrets and information of mother and baby from the perspective of midwifery personnel.

The results of the current study revealed that midwifery personnel rated respect for individual autonomy, privacy, secrets, and information regarding mothers and babies as average. To explain this research finding, it can be stated that the issue of mother and baby autonomy, privacy, secrets, and information is like a puzzle. A specific law does not govern it, and this can cause serious harm to this group. The existence of this legal gap can affect the efforts of ethical activists in the medical field. It is true that, at present, the preparation and implementation of an ethical guide based on the provisions of the patient's bill of rights can be effective to some extent in solving this problem. However, it is always critical to implement and take necessary measures to deal with violations of the guide in addition to preparing it. By making one set of regulations, the health policymaker may be able to solve the problem temporarily. However, such guidelines require specific legal support to encourage commitment and adherence by all health service providers. Therefore, in combination with the development of ethical guidelines to explain the media's relationship with the health system, necessary efforts should be made to pass laws to ensure the constitutional requirement of such guidelines.

In the context of providing healthcare, the patient's individual autonomy is considered to be an ethical challenge [8]. Looking for opportunities to improve individual autonomy instead of assuming the right to choose is a major challenge for health service providers. In addition, sometimes patients and healthcare providers have different understandings. On the one hand, passive patients accept that health service providers should make decisions for them. On the other hand, health service providers do not sufficiently examine the needs and skills of patients and do not encourage them to make independent decisions [1].

As reported in this study, patients participating in a study reported the most stressful things during hospitalization as changing habits, lack of control, lack of autonomy and solitude [8]. Some studies show that the performance of elderly patients decreases at the time of discharge compared to the time of admission. This is caused by the negative effects of hospitalization on these patients' physical and mental health. This problem is not caused by illness, but it is the result of feeling powerless and being ignored in the decision-making process, which is related to decreased performance and mental damage [27]. In a study conducted in Iran, patients believed that their autonomy was not respected [12]. The results of another study indicated that none of the patients reported being given a chance to make a decision by the nurse [1]. Also, the results of Proot et al.'s studies show that the factors limiting patients' individual autonomy are routine care measures, lack of privacy, time limitations, waiting period, fatigue, paternalistic behavior, lack of information, lack of evaluation and lack of consultation [7, 28]. The reasons for failure to respect individual autonomy, privacy protection, patient secrets and information, lack of staff, time limitations, lack of facilities [29], economic and social pressures, and work pressure For care providers, especially nurses, the specific limitations of the work environment, including the work structure and communication environment, the limitation of equipment and facilities, the lack of time and the inappropriate structure of the department and the hospital [30], the lack of proportion of the number of nurses to the patient, and the lack of psychological security and the long working hours of nurses have been mentioned in studies [2].

The results of the present study showed that the average score of privacy protection from the point of view of midwifery personnel is average. In order to provide nursing care and midwifery care, it is often necessary to enter the personal space of patients, and midwifery and nursing care must enter the territory of patients to do so [31]. Although the medical staff agree on respecting patients' privacy [32], unfortunately, the evidence shows that patients' privacy and dignity are not well protected.

The results of a study showed that 25% of patients admitted to British hospitals stated that their privacy was not respected during the hospitalization period [33]. Also, a study in Australia revealed that 25% of the patients hospitalized in the emergency department feel that the people around them can hear their conversation with the healthcare personnel, and 11% of them had the experience of exposing parts of the body [34]. The study conducted in Kerman showed that some aspects of patients' privacy were less respected by nurses in terms of patients hospitalized in internal and surgical departments [31].

According to the results of the present study, the average score for midwifery personnel was average when it came to keeping secrets and information about mothers and babies. It is important to mention that confidentiality is one of the medical profession's necessities, so it is established as a principle among patients and doctors. This is why patients talk to doctors and staff about things they have kept secret from everyone else. Even now, this issue is considered an invaluable principle in ethical codes and professional guidelines, and a lot of emphasis has been placed on it [14]. There are many reasons for confidentiality, including trust, respect for patient autonomy, result orientation, and respect for others [35].

CONCLUSION

In the present study, the average score for respect for individual autonomy, privacy, and secrets of mother and baby was average from the point of view of midwifery personnel. It can generally be said that health providers, treatment teams, managers, and policymakers all play a part in challenging individual autonomy, privacy, secrets, and information concerning mothers and newborns. Having low self-confidence and lacking knowledge about herself and her baby's rights in the hospital can result in mothers not respecting their own rights regarding autonomy, privacy, secrets, and information. Educating patients about their rights in the hospital improves their attitude and motivates them to maintain autonomy, privacy, secrets, and information. Furthermore, health policymakers should focus on training maternal healthcare providers on the personal autonomy, privacy, secrets, and information of mothers and babies. They should also emphasize how to consider it while communicating with mothers during treatment. By adjusting these factors, administrators and healthcare providers can improve respect for mother and baby's autonomy, privacy, secrets and information.

LIMITATIONS OF THE STUDY

Study limitations include the short study period, the use of self-reporting methods, and the small number of participants. In future studies, respect for individual autonomy, privacy, secrets, and information of mothers and babies should be evaluated personally and through interviews. A larger sample size and a longer period of time should also be used to study the components of respect for individual autonomy, privacy, secrets, and information of mother and baby. The limitations of the research create cautions in generalizing the findings. Considering that this study was conducted at a university level, one should be cautious about generalizing the findings.

REFERENCES