Iranian stroke patient’s perception of dignity, autonomy and privacy: a questionnaire survey

INTRODUCTION

The increasing prevalence of chronic diseases and the need for long-term care can have an impact on the patients and their families’ lives.^1,2 Stroke is one of the main causes of death and disability which affect patients independence in activities of daily living.^3,4 The findings of studies in Germany and Japan have shown that one out of five of the general population have at least one stroke event in their lives.^5,6 Some studies in Iran reported higher prevalence of stroke events among Iranian population compared to developed countries.^7,8

Stroke patients’ experience many physical and psycho-social problems. Most of activities of daily living of stroke patients are performed by related agencies or family members which may adversely affect patient’s autonomy.^1-9 So, respecting these patients’ human rights and dignity is crucial.¹⁰ Dignity is a core concept in nursing care of stroke patients and respecting their dignity is critical to their recovery.¹¹

Oxford dictionary defines dignity as “the state or quality of being worthy of honour or respect”. In the case of patients it means honourable or respectful treatment or care.¹² There are few studies which have examined dignity among stroke patients. The findings of Fletcher-Smith et al study in the UK showed that the dignity of stroke patients was not maintained well.¹³ As well, there no studies examining Iranian stroke patients’ perception of their dignity in the hospital setting. However, the findings of some qualitative studies showed that Iranian patients believed that their dignity is not respected in hospital settings.^14-16

The dignity is an abstract and complicated concept which influenced by many factors. So, identifying factors associated with this concept is required for providing dignified care.¹⁷ Respecting patients’ privacy and autonomy, keep patients' secrets confidential, listen to and honour patients, allowing patients to speak about their concerns and have the right to choose/refuse treatment has been mentioned in previous studies as important factors that are likely to influence patients dignity.¹¹ Protecting patients’ privacy and respecting their autonomy are two important concepts that are related to dignity.^18-23 However these relationships are not well investigated in previous studies.¹⁸

For many reason patients with stroke are more susceptible to loss of dignified care.⁹ To the best of our knowledge, there are inadequate studies that examined patients’ perception of dignified care and its association with privacy and autonomy. Accordingly, the aim of this study was to recognize the level of self-perceived dignity and its relationships with the perception of respected autonomy and privacy among Iranian stroke patients.

METHODS

This descriptive-correlational study was conducted in an educational centre affiliated to Ardebil University of Medical Sciences, Ardebil, Iran. This centre has one hospitalization ward and two out-patient clinics for stroke patients.

The study population included all patients who referred to the educational centre during the study period and met the following criteria: (a) be at least 18 years old; (b) having confirmed stroke diagnosis; (c) having paresis or plegia in at least one limb; (d) transition from the acute to the rehabilitative phase; (e) no dependency to others for activities of daily living; (f) absence of aphasia; and (g) willing to participate and answer to questions. Patients with any other chronic diseases or severe psychological disorder were excluded. The sample size (n=150) was calculated based on a pilot study of 30 patients. A convenience sample of 310 stroke patients was assessed. Overall, 172 stroke patients met the criteria; of those 166 patients accepted to be enrolled (response rate=97%).

The instrument for data collection composed of four parts. The first part composed of some items to collect the demographic/disease-related characteristics of patients which collected according to patients self-report or their medical records. The second part was Vlug scale developed by Vlug et al.¹⁷ This scale has 26 items classified according to a five-point Likert scale ranging from 1 (never) to 5 (Very Frequently). The total score of this scale is 26 to 130 points; the higher the score indicate higher respected dignity.¹⁷ The third part was Bout scale developed by Bout et al.²⁴ This scale has 22 items classified according to a five-point Likert scale ranging from 1 (strongly agree) to 5 (strongly disagree). The total score of this scale is 22 to 110 points; the higher the score indicate lower respected autonomy.²⁴ The forth part was a scale developed by Arciero et al in 1993.²⁵ This scale has 13 items classified according to a four-point Likert scale ranging from 1(never respected) to 4 (always respected). The total score of this scale is 13 to 52 points; the higher the score indicate higher respected privacy.²⁵

For using the questionnaires, the scales were translated into Persian and then, the accuracy and fluency confirmed by a translator expert in both Persian and English languages. The scales face and content validity were assessed and verified by the expert panel constituted ten members. The final version of the questionnaires was tested for reliability in a pilot study involving 30 stroke patients. Cronbach-alpha coefficient values for all scales were higher than 0.89.

Before the data collection, the study proposal was approved by the regional ethics committee of Tabriz University of Medical Sciences. Next, researchers were referring to the hospitalization ward and both out-patient clinics from April to July 2015. Patients who met criteria for the study were identified and all eligible patients were invited to participate. After being presented basic information, willing patients were asked to participate in a private interview for data collection. All patients who participated in the study gave informed consent.

Data were analysed using SPSS version 13. Descriptive statistics such as the mean and standard deviation were used to describe demographic/disease-related data. Relationships between patients' perception of dignity with levels of respected autonomy and privacy were assessed by Pearson's correlation.

RESULTS

Table 1 shows some socio-demographic and disease-related characteristics of the patients. As shown in Table 1, most of participants were male, married, illiterate, housewife, more than 78% of patients over 60 years old, lived with their spouse and children and had a financial condition of income less than cost. Also, most of them were hospitalized more than 10 days and their physical problems were often accompanied by hemiparesis.

The mean of patients scores in three questionnaires of dignity, autonomy and privacy is represented in Table 2. As shown in Table 2, patients’ dignity and privacy was moderately maintained according to patients’ responses. However, maintenance of patients’ autonomy was higher than dignity and privacy.

There was a significant negative correlation between patients’ self-perceived dignity and their perception regarding maintenance of their autonomy (r= -0.27; p= 0.001). Similarly, there was not a significant relationship between patients’ self-perceived dignity and their perception regarding protecting of privacy (r= 0/098; p= 0.001).

DISCUSSION

The aim of this study was to evaluate the level of self-perceived dignity and its relationships with the perception of respected autonomy and privacy among Iranian stroke patients.

The study findings showed that the dignity of Iranian stroke patients was preserved moderately. According to extensive literature review there are few studies which explore stroke patients’ perception of dignity.²⁶ However several studies were assessed the overall state of maintenance of patients’ dignity in clinical settings. For example, Avestan et al reported that the dignity of Iranian cancer patients is not properly maintained in clinical settings.²⁷

The findings of Birrell et al in UK also showed that many patients were not satisfied with the maintenance of their dignity in clinical settings.²⁶ In another study in England Fletcher-Smith et al reported similar findings.¹³ The findings of a qualitative study by Torabizadeh et al showed that the dignity of Iranian patients is not preserved in hospital settings.¹⁵ It seems workforce shortage and some shortcoming of educational hospitals such as presence of medical students during patient visits, lack of hospital bed and high number of patients in hospital rooms are most reasons indicating that the dignity of Iranian patients is not properly maintained in hospital settings.

The study findings also showed that the privacy of study participants was maintained moderately. Contrary to our findings Woogara et al in England reported that the patients’ privacy is not protected in hospital settings.²⁸ Karro et al in Australia also reported similar findings.²⁹ However the findings of studies in United States and Turkey showed patients satisfaction of having their privacy respected.^30,31 The findings of some studies in Iran also revealed that patients’ privacy is not protected appropriately.^15,16 It appears that some factors such as the large number of patients in hospital rooms and overcrowded healthcare settings are important causes of unmet patients’ expectations of privacy.

As another finding of this study, patients believed that maintenance of autonomy was higher than dignity and privacy. Some studies reported a lack of regard for patients' autonomy in Europeans countries.^32,33 Xiong et al also reported that Chinese patients’ autonomy is not respected in hospital setting.⁴ Rahmani et al also reported that the privacy of Iranian patients is not completely protected in clinical settings.³⁴ The findings of Ebrahimi et al study in Iran revealed that respect to patients’ autonomy can be result in patients’ physical/mental comfort, independence, adherence to treatment and self-confidence.³⁵ However, the combination of sensory and motor deficits in stroke patients may adversely affect their sense of not maintained autonomy. For example, Akbari et al reported that there was correlation between upper extremity function and independence in activates of daily living among stroke patients.³⁶

The study finding also showed a significant negative correlation between patients’ self-perceived dignity and their perception regarding maintenance of the autonomy.

Despite the strength of this study, it also has some limitations. First, a sample of patients admitted to a medical center in East Azerbaijan province in north-western of Iran cannot represent the overall state of perceived dignity among Iranian stroke patients. Next, the data were obtained using interview which may limit the implication of our study. In relation to future research, investigating other factors that may affect the dignity of stroke patients require further investigation. Exploring family and healthcare workers’ perception of dignity is also recommended.

ACKNOWLEDGEMENTS

This is a report of a database from a thesis approved by Tabriz University of Medical Sciences. The authors wish to acknowledge all of the patients, whose contribution enabled the production of this article.

Funding: No funding sources

Conflict of interest: None declared

Ethical approval: The study was approved by the institutional ethics committee

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