Barriers to health information seeking in Iranian ... - Heart & Lung

Heart & Lung 43 (2014) 183e191

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Barriers to health information seeking in Iranian patients with cardiovascular disease: A qualitative study Mohammad Gholami, PhD(c) a, Masoud Fallahi Khoshknab, ADN, BScN, MScN, PhD a, *, Sadat Seyed Bagher Maddah, BScN, MScN, PhD a, Fazlollah Ahmadi, BScN, MScN, PhD b, Hamidreza Khankeh, RN, MS, PhD a a b

Nursing Department, University of Social Welfare and Rehabilitation Sciences (USWR), Tehran, Iran Nursing Department, Faculty of Medical Sciences, Tarbiat Modares University, P.O. Box 14115-331, Tehran, Iran

a r t i c l e i n f o

a b s t r a c t

Article history: Received 6 July 2013 Received in revised form 18 January 2014 Accepted 22 January 2014 Available online 19 March 2014

Objective: Providing patients with health care information is a critical component of the process of cardiovascular disease (CVD) management. The purpose of this study was to explore obstacles to seeking health care information among cardiovascular patients from the perspectives of patients, their family caregivers, and health care providers. Methods: This study was conducted with a qualitative approach using conventional qualitative content analysis. The study included 31 Iranian participants including 16 cardiovascular patients, 5 family members, and 10 health care providers (multidisciplinary). Data were collected with semi-structured interviews and continued to the point of data saturation. Analysis of the data was performed continually and concurrently with data collection of using a comparative method. Results: Five themes emerged including ‘poor quality of information provision,’ ‘mutual ambiguity,’ ‘beliefs, faith, and expectations,’ ‘from routine life to obtaining information,’ and ‘conditions governing information seekers.’ Seven sub-themes indicated participants’ experiences and understandings of obstacles in health care information seeking. Conclusion: Health care information seeking in cardiovascular patients and their family members occurs as a result of the influence of beliefs, interaction with numerous information sources, and in the context and structure that the care and information are provided. Understanding the nature of obstacles to health information seeking will help health care policy makers to provide evidence-based, reliable, and patient-centered information to encourage cardiovascular patients’ involvement in treatment decisions. Ó 2014 Elsevier Inc. All rights reserved.

Keywords: Health information seeking Cardiovascular disease Barriers

Introduction Cardiovascular disease (CVD) is the leading cause of death and disability in Iran and worldwide.1 In spite of a 45% mortality rate due to cardiovascular diseases,2,3 the increasing growth of coronary artery bypass graft (CABG) surgery,4 and rising hypertension levels in Iran,2 the health care system in this country has mostly focused on the control of communicable diseases and the development of primary health services.2,3 Despite utilization of information technology in other sectors of the health system, there are few information technology resources for cardiovascular patients in Iran,5 and patients may acquire self-care information from non* Corresponding author. Tel.: þ98 21 22180036, þ98 9125097144 (mobile); fax: þ98 21 22180036. E-mail addresses: msfl[email protected], [email protected] (M.F. Khoshknab). 0147-9563/$ e see front matter Ó 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.hrtlng.2014.01.010

accredited sources.6 Although there are non-governmental organizations (NGOs) and charities to support other chronic diseases such as diabetes and cancer patients,3 there are still no government or public societies to support cardiovascular patients.7 Thus, there is a need to address the information needs of cardiovascular patients in Iran.2 Patient involvement in health care decisions8 and active patient engagement to seek relevant information includes obtaining information on treatment options, choice of physicians, management of symptoms, and dealing with the social and emotional aspects of the disease.9 However, in Iran cardiac patients and their families often fail to acquire relevant information10 with resulting negative consequences, such as problems enhancing quality of life,11 feeling alone with physical/mental setbacks,10 uncertainty in the management of their disease,6 non-compliance with exercise and low sodium diet and delay in treatment seeking.12

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Iranian studies have revealed non-collaborative organizational cultures governing hospitals13 and poor inter-sectorial cooperation as barriers to obtaining cardiovascular information.14 Many are readmitted due to deficient self-care knowledge.5 A qualitative study revealed that acquiring information could be a method for regaining control over one’s own situation.15 Evidence-based and tailored information could also provide key strategies for the successful management of heart failure.16 Also obtaining health information can help the patient to seek out the meaning of illness experience, develop coping strategies,17 and make informed decisions.8 Despite the useful outcomes of information seeking, some studies have shown that cardiovascular patients are exposed to challenges in information seeking, despite the desire to find information relevant for self-management strategies, and practical advice.16,18 In a study by Alavi et al (2012) in Iran, access to unreliable, outdated and non-systematic rehabilitation sources were obstacles in gaining quality information for cardiovascular patients.19 A review of previous studies about health information seeking behavior has shown16,18e20 that understanding the phenomenon and its obstacles is defective in cardiovascular patients. Limited studies have been conducted on health information seeking; however, they mostly deal with cancer patients,21,22 parents, women in rural areas, the general public,23 African-American men and women,24,25 diabetics,26 and AIDS patients.8 In these studies, variety of social, cultural, economic, physical, cognitive, and affective factors have been cited as barriers to seeking health information.24e26 The role of the patient’s social network and background in information seeking has rarely been addressed.21,26 Some other studies have investigated the pattern of information seeking and the association of social determinants with information seeking in mass media and the Internet,9,24,26 using mainly unreliable questionnaires.9,27 Most non-Iranian studies have focused on information needs of cardiovascular patients, with particular emphasis on prognosis and medication information, and also on patient-health care professional communications.28,29 In Iranian studies, the focus has been on interventions associated with information support,5 investigation of information needs through non-native questionnaires, and the role of the patient and family in searching for information from various sources has been less considered.13,14 Information seeking is a behavior dependent on the social context and structure of the health care system.8,9 Given that the majority of patients are Muslims, with a diversity of religious minorities (e.g. Shia and Sunni) and ethnicities (e.g. Fars, Turkish, Kurdish, and Gilak), and also the uniqueness of the health system in Iran,30 studying information seeking in the Iranian community has been recommended in other studies.13,14 However, to date, there has not been any study focused purely on information seeking in the Iranian cardiovascular patient. Furthermore, a review of the existing literature lacks a naturalistic orientation,20 while patients’ stories provide a basis for understanding how information is sought in areas with little knowledge.31 Therefore, the aim of this study was to examine barriers to seeking and obtaining information among Iranian cardiovascular patients, their families, and professional caregivers. Methods Design Qualitative content analysis used for the interpretation of the content of the text data, and through a process of regular classification, implicit and explicit themes or patterns in the text can be identified.32 This method concentrates on life experience, interpretation, and concepts to which patients have been exposed.33

This study presents the results of conceptual ordering produced by constant comparison analysis. The aim of conceptual ordering is developing categories in terms of their properties and dimensions by the process of content analysis as called in GT open coding. Conceptual ordering is classifying events and objects along various explicitly stated dimensions, without necessarily relating the classifications to each other or developing an overarching explanatory scheme.34 This study is a component of a larger study that explored the process of health information seeking in patients with cardiovascular diseases. Conventional content analysis was used to address the aim of the current study. The study was approved by the Research Ethics Committee of the Welfare and Rehabilitation Sciences University and Tehran University of Medical Sciences. All participants provided written informed consent. Sample and setting A criterion sampling technique35 was used to identify and select patients from two sub-specialty heart hospitals, rehabilitation centers and clinics affiliated with the Tehran University of Medical Sciences. These centers are the major referral centers for the treatment of CVDs in Iran. Included patients had a diagnosis of CVD and were aged 18 years or older. Health care professionals had at least one year’s experience in the treatment and care of cardiac patients. Family caregivers had experience living with and caring for these patients. All had the ability to understand and speak Persian and a desire to take part in the study. The first author was available during morning and afternoon shifts at the above mentioned hospitals to conduct the interviews. Face to face contact with potential participants was strategic to ask them to participate in study. Then, based on good rapport established with the participants and with the cooperation of nurses in these centers, first, patients and their family members who had greater experience with seeking health information, and also health workers that had the necessary experience of training and interacting with cardiac patients were identified. Considering that the patients were the key participants in this study, as the study developed and in order to have maximum variation, attempts were made to select cardiovascular patients from different socioeconomic and demographic backgrounds (such as age, marital status, education level, occupation, ethnicity, etc.), as well as patients in various stages of illness and treatment (diagnosis to rehabilitation). A total of 31 people including 16 patients, 5 family caregivers, and 10 professional care providers from various disciplines, over 12 months (May 2012 to May 2013) participated in this study. Data collection procedure The semi-structured interview began with an open question based on the main question of the study such as: ‘How do you obtain cardiac related information? What are the challenges for you in seeking health information?’ Then, based on the analysis of this data, more probing and follow-up questions were asked with respect to the subjects’ daily experience of seeking this information. First interviews were conducted with cardiovascular patients. However, given the role of family members and health care professionals in the process of information seeking, after consultation with the research team, interviews were conducted with family caregivers and professional care providers for greater clarity and accuracy of the conceptual categories. Based on saturation of data in the qualitative study, a total of 31 interviews were conducted with 31 individuals, in the Persian language, each lasting between


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Table 1 Demographic characteristics of participants.

Patients (n ¼ 16)

Family caregivers (n ¼ 5)

Health care providers (n ¼ 10)

Variable

Value

Range

Age Gender, n (%) Male Female Ethnicity, n (%) Fars Turk Gilak Others Religious, n (%) Shia muslim Sunni muslim Christian Marital status, n (%) Married Divorced Single Employment status, n (%) Employed full or part-time Housewife Retires Unemployed Education, n (%) No formal school High school or diploma College degree Professional or graduate school Time since diagnosis (mean SD) Type of cardiovascular disease, n (%) CABG HF Aortic coarctation ACS MI CHD Dysrhythmia Age (mean SD) Gender, n (%) Female Male Role in family, n (%) Husband Mother Children Status employment, n (%) Housewife Employed full time Age (mean SD) Gender, n (%) Female Male Type of health care provider, n (%) Cardiologist Nurse Physiotherapist Dietitian Clinical pharmacist Health psychiatrist Experience in cardiac care (mean SD)

54 6.3 years

21e82 years

8 (50%) 8 (50%) 7 3 2 4

(43.75%) (18.75%) (12.5%) (25%)

14 (87.5%) 1 (6.25%) 1 (6.25%) 11 (68.75%) 2 (12.5%) 3 (18.75%) 7 5 2 2

(43.75%) (31.25%) (12.5%) (12.5%)

3 7 5 1 11

(18.75%) (43.75%) (31.25%) (6.25%) 4.4 years

1 month to 36 years

5 4 1 1 2 2 1 41

(31.25%) (25%) (6.25%) (6.25%) (12.5%) (12.5%) (6.25%) 6.8 years

25e66 years

4 (80%) 1 (20%) 2 (40%) 1 (20%) 2 (40%) 3 (60%) 2 (40%) 39.7 7.18 years

29e52 years

7 (70%) 3 (30%) 3 (30%) 3 (30%) 1 (10%) 1 (10%) 1 (10%) 1 (10%) 9.8 4.6 years

4e20 years

SD, standard deviation; HF, heart failure; CABG, coronary arterial bypass graft; MI, myocardial infarction; CHD, congenital heart disease; ACS, acute coronary syndrome.

25 and 80 min. With their agreement and also for their comfort, the majority of the interviews were conducted by the participants’ bedside, some at their workplaces, and some at their homes. All interviews were performed by the first author and recorded by a digital recorder with the participants’ agreement. A brief, personal details questionnaire was also completed by the participants after each interview. Then the interviews were transcribed and typed into Microsoft Word software, verbatim, within 24 h. To facilitate deep immersion in the data, the interviews were listened to several times, and the typed texts were also revised repeatedly, coded, and analyzed.

Analysis The data were analyzed in eight different stages: preparing the data, identifying conceptual units, coding the text, matching codes to the text, grouping and developing categories based on similarity and congruence, revising classes and re-comparing with data to ensure solidity of codes, accurately identifying themes and comparing classes with each other, and reporting the findings.32 To ensure the accuracy, reliability of the qualitative data, and scientific accuracy, we addressed the criteria of credibility, dependability or accountability, transferability, and confirmability.36 To

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increase the reliability of the data, the researcher was involved with the data over the one year duration of the study. Interview texts and list of categories were revised by other research colleagues with experience in qualitative research. In addition, through the process of member checks, initial coding of interviews were reviewed by the interviewees to confirm the accuracy of the codes. Two faculty members who were familiar with qualitative research reviewed the codes and agreed on the interpretations. To audit the study, the researcher accurately recorded and reported stages and process of the study. Efforts were made to quote participants’ statements as accurately as possible. Along with native English speaking professionals, the first author translated the categories, subcategories and quotes from Persian into English obtained from the interviews. The translation was edited by professional English editors. Results A total of 31 individual interviews were performed. Of the 16 patients, 8 were female (50%), most were middle aged (54 years; range 21e82 years old), married (68.75%), had high school diplomas (43.75%; range from no formal school to Ph.D.). Of the 5 family caregivers, most were female (80%), housewives (60%), husbands (40%) or children (40%). Of the 10 health care providers most were female (70%) and cardiologist and nurse (60%). Table 1 shows details of personal characteristics of participants. Initially, 910 codes were extracted from the interview text. Continuous comparison and analysis of data, five main themes were established, which included ‘poor quality of information therapy,’ ‘mutual ambiguity,’ ‘beliefs, faith, and expectations,’ ‘from routine life to obtaining information,’ and ‘conditions governing seekers.’ Seven sub-themes were conceptualized as, ‘obstacles to health information seeking.’ Table 2 presents these themes and sub-themes, which are explained as follows: Theme: poor quality of information provision All participants described the ‘poor quality of information provision.’ Participants reported that patients and their families do not receive information appropriate for their personal needs and applicable to the management of their lives. Stated reasons include the poor performance of the health care system, poor attention by radio and television in presenting information, poor interdisciplinary communication among health care providers, and also their poor relationships with their patients. This theme comprised five sub-themes of ‘poor information performance of health care providers,’ ‘inadequate responsiveness of the health care system,’ ‘lack of media information,’ ‘discrete information communication,’ and ‘non-personalized information.’ Poor information performance of health care providers Experiences of the participants showed that when patients experience problems that cause concern, such as exposure to pacemaker dysfunction and the appearance of new symptoms, they do not have adequate information to face these conditions. So they turn to safe information sources like physicians and nurses. However, they often report receiving inadequate responses and training from these sources that causes further concern. For example, a patient stated, ‘I asked my doctor if I needed surgery, but he didn’t explain what will happen after catheterization. Do I need surgery? Or will they do that stuff for me? What about complications, are there any, yes, no? I couldn’t get an answer, whoever I asked’ (Patient 3). Some patients reported that health care providers did not value the involvement patients when seeking information and regarded it as interference in their work. Health care providers indicated that their

Table 2 Themes and sub-themes associated with barriers in health information seeking. Main theme

Sub-theme

Poor quality of information provision

Poor information performance of health care providers Inadequate responsiveness of the health system and medical education Media weakness in providing information Discrete information communication Non-personalized information Patient’s confusion Health care providers’ confusion

Mutual ambiguity Beliefs, faith and expectations From routine life to obtaining information Conditions governing information seekers

inadequate responses to patients’ questions resulted from their inability to identify patients’ information needs and gaps in own knowledge. However, patients considered time constraints and commercialization of the medical profession to be barriers to responses of health care providers. For example, ‘He (physician) wouldn’t let you speak at all. he said it’s none of my business to know what my disease was. They think we are entering their territory. So I said, how much should I pay to take a bit of your time?’ (Patient 26). Inadequate responsiveness of the health system and medical education Both patients and health care providers identified failure of the health care system and inadequate, academic training and continuing education for staff to be significant barriers. They also reported the absence of group training classes and counseling services, as barriers. They considered the need for surgical counseling, nursing counseling, or even religious counseling as important. Nurses stated that administrators did not value the training of knowledgeable nurses to respond to patients’ information needs, one of the participants stated, ‘Hospitals (managers) think more about staff shortages rather than the scientific knowledge of nurses. Management systems cannot scientifically reinforce nurses, hence, a lack of information remains for the patients’ (Nurse 16). A participant argued that there is a lack of counseling services as he has seen portrayed overseas, ‘In foreign films, patients have a counselor for surgery. patients sit down, they cry if they want to, unfortunately here, officials do not provide such services for us’ (Patient 11). One of the patients mentioned lack of a place to talk with peers, ‘There was no room in the hospital to talk with patients like myself. that’s why I surfed the Internet and found ‘New York Heart Academy.’ (Patient 30). Five of the participants identified a lack of direct phone lines, inappropriate physical space for holding training classes, especially sexual counseling, and disrupted care as obstacles in obtaining information. Media weakness in providing information Participants regarded T.V. as a source of information, but stated that instead of public training about cardiac disease, which is the leading cause of death in Iran, their priority seems to be other areas of health. ‘On T.V. they talk about breastfeeding, or are concerned about addicts, they talk so much about drugs, but they don’t talk about heart diseases and other treatment methods in other countries that we don’t know about’ (Patient 4). All of the health care workers, five patients and family caregivers identified the poor performance of the media, particularly


T.V. in respect to providing education for healthy lifestyles, primary prevention, and participation in heart rehabilitation programs. ‘Radio and T.V. explain very little, they quickly fill the program. they should show the difficulties of heart patients as lessons to others, but their warnings are rather weak’ (Family Caregiver 22). Discrete information communication The majority of participants described the lack of ideal information communication among the treatment team, patients and families, as being a communication barrier between patients and staff. For example, ‘Look how doctors do not talk to patients at all, short and sweet, well, the patient cannot talk about his problems with the doctor, doctors consider themselves too high and mighty. When we patients ask a question, it is not pleasant for them, even a second year resident looks down on patients, so I keep my distance and don’t ask him any questions’ (Patient 1). Regarding the separation of nurses from patients, a nurse said, ‘We nurses are far too distant from patients, though we are near, yet we are so far away, how is the patient going to find any information, if nurses do not even look a patient in the eye, how is a patient going to ask a question?’ (Nurse 12). Respondents considered conditions like lack of staff motivation, inadequate training about patient-oriented communication, work load and clinical governance as obstacles for establishing communication with the patient and responsiveness to patient’s needs. Also, nurses reported lack of information exchange between physicians and nurses leading to inability to accurately respond to patient’s questions. In respect to communication between health care providers, one of the nurses said, ‘The problem is communication between the doctor and nurse. The doctor regards himself as a separate entity and the nurse the same. Therefore there is a communication breakdown in the system. ‘The patient asked about an angiography report, and I said I didn’t know, we have no communication with doctors at all, in a clinical round. A scientific discussion never occurs between the doctor and the nurse so that we are informed about the doctor’s information of a patient. Well under those circumstances, we can’t have answers to patient’s questions’ (Nurse 21). Non-personalized information Patients described a lack of proportionate, comprehensive and applicable information for their individual needs and situations. For example, a patient stated, ‘At the moment, I’m taking warfarin, but it wasn’t explained in a book I bought. The explanation was inadequate, like if I eat vegetables, what happens to me? Or if I go to the dentist and my PT is 14, should I go? I had no clues for these.’ (Patient 9). Although published material was available, some participants mentioned that publication and pamphlet contents and the explanations of health care providers were general and repetitive, and did not respond to their needs. A doctor confirms the patients’ experiences and states, ‘We give patients only general information. Every patient has a job. One is a driver, one is retired, we cannot tell them one by one.’ (Doctor 14). Six of the participants highlighted the non-applicability of information for self-care and the correct method of taking medication appropriate to their disease. ‘I bought a book called when to visit the doctor, but it was not much use. In the end it says you should visit the doctor. It doesn’t say what I should do in the meantime if I have pain until the paramedics arrive.’ (Patient 24). Also, few patients mentioned non-individual nature of information on the Internet: ‘I checked the website of heart hospitals (in Iran). Their information was general. I was looking for some information like my own situation, but there was none’ (Patient 30).

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Theme: mutual ambiguity Patients reported being faced with conflicting recommendation when accessing various sources including doctors and the Internet. Health care providers themselves were confused in areas describing various treatment options and aims based on the cultural beliefs to their patients, as well as in informing patients of drug side-effects, risks of surgery, and prognosis, and they did not know exactly how to explain these to their patients. To this end, the resulting two-way confusion meant that patients did not receive definitive information. This theme comprised two sub-themes of ‘patient’s confusion,’ and ‘health care provider’s confusion.’ Patients reported confusion due to obtaining conflicting advice. One of the family care providers stated, ‘. but doctors! One on the first floor (of the hospital) tells my mother to drink water, on the second floor they say she shouldn’t drink, on the third floor they say she should take salt, and on the fourth floor they advise her not to take salt. None of them are even remotely similar’ (Family Caregiver 5). Some participants considered conditions such as a number of different doctors visiting the patient, lack of a common medical language, patient’s misunderstanding of information, unpredictability of the patient’s condition, living with huge volumes of information, and invalid Internet sites, as reasons for the development of this confusion. Health care providers expressed confusion that explaining various treatment-care options, medical possibilities, and sideeffects to patients leaving patients feeling desperate and at a crossroad. One of the doctors stated, ‘Whether patients should know about prognosis or drug side-effects is somewhat questionable for me, often I’m in two minds. There are still many questions unanswered for us.’ (Doctor 15). They regard their lack of experience and a specific strategy for informing the patients of the bad news as the reasons for the confusion, which results in a loss of patients’ confidence in doctors, non-compliance with treatment regimens, along with increased feelings of frustration and concern. Theme: beliefs, faith, and expectations Experiences of most participants showed that health information seeking behavior is influenced by their general beliefs, faith in health, and expectations of the health system. Some of these views were based on the paternalistic nature of medicine. Some patients and health care providers believed that information seeking is not the responsibility of the patients. Others (e.g. women living in rural areas) are not able to acquire information. Other elements comprising this class consist of a lack of belief in written information, and a lack of belief in the information provided by other staff (e.g. nurse, dietician). A dietician stated; ‘Patients would rather believe any word coming from doctors than in what I say. I explain an issue, very scientifically for hours, but what I say has no value for patients because our patients are physician oriented’ (Dietician 13). One of the patients declared that he was not going to seek information because, ‘The doctor has read about this and specializes in it. If I look for information, I would be interfering in their patch. I have read mechanics, and should produce electricity. I believe I shouldn’t seek such information. It’s doctor’s duty to tell me about medical information.’ (Patient 8). Three patients stated that because of their belief in death as part of the cycle of life, and a belief in quality of life, they were not concerned about their survival chances. Some others expressed that because of their belief in medical science, scientific information, and confidence in the health care providers, they had never sought information from herbal therapists, or any non-traditional medical person. In responding to the researcher’s question, ‘Have you sought information from other heart patients?’, one of the

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patients said, ‘I haven’t asked anyone else because I don’t trust them much. I mean I couldn’t find anyone of my relatives that I could believe scientifically. My uncle used to say., but I couldn’t accept his word’ (Patient 6). Participants’ experiences showed that both positive and negative beliefs form health information seeking behavior and compliance with the advice obtained. A patient said, ‘I don’t read medical books ‘cause I don’t believe in or trust them. The knowledge in these books is produced in labs and expires after a while. but I read books about herbal medicine or traditional food. I talked with traditional healers ‘cause I think traditional information are better for life’ (Patient 17). Theme: from routine life to obtaining information Many participants reported that information seeking about CVD was a response to the need to understand the risks of heart disease, and diversion of life from its normal path. When they felt healthy and had the necessary information about self-care, did not look for information, but sometimes attempted self-control of their symptoms. Participants’ experiences in this respect are as follows: ‘While symptoms are not felt, and their heart continues to beat, a person with heart disease thinks he has a healthy heart, and is not usually bothered about finding information or maintaining a healthy heart’ (Nurse 21). One of the cardiac patients stated that, although he was always well-read in other areas, ‘I have never read anything about the heart, and ever since I remember, from when I was a teenager, I never gave up my exercise, as I never thought anything would happen to me’ (Patient 25). In fact, participants’ experiences indicated that relying on their past healthy lifestyle, knowing about their general health through periodic check-ups, lack of clinical symptoms, having prior information for controlling situations, and leading a normal life, patients did not see any reason to seek information. A patient, despite having arrhythmias in the early stages, said, ‘I didn’t think reading any articles about the heart was necessary at all because I had quality of life, and I was carrying on with my life peacefully’ (Patient 29). Other participants expressed that they no longer sought further information when they were living with their illness and gradually acquiring the necessary information for self-care. Thus, this perception may be a barrier to seeking further information related to CVD. Theme: conditions governing information seekers Participants noted situations and unfavorable physical, mentalpsychological, cognitive, cultural, economic, family, and time factors, as obstacles to information seeking. Finances and family were the principle obstacles in obtaining information, while elevated treatment and living costs, o maintain family finances, domestic problems, and an unfavorable family atmosphere, were also not conducive to seeking information. One participant said, ‘Sometimes the atmosphere at home doesn’t allow me to use the Internet. Since the computer is in my room, when I’m alone in my room my mother thinks I’m distressed, and that’s why I don’t mingle with others’ (Patient 7). Regarding the high expenses of health care, a patient said, ‘Well, I ask my questions during the visits, but it’s sometimes that I haven’t been to the doctor ‘cause I’m a housewife and my husband is a teacher. We have little income and doctor’s fee is high for my family’ (Patient 2). Physical conditions of the patients like limited mobility, unstable hemodynamic status, chronic illness and bodily exhaustion, sleep disorders, and poor hearing, were also obstacles that some

participants mentioned. For example, ‘I planned to visit the old herbal and traditional medicine experts in Shahr-e Ray (a city in Iran) for consultation, but shortness of breath didn’t let me, and I couldn’t walk’ (Patient 10). Mental health concerns, especially distress and depression were also obstacles. A psychologist observed, ‘The thing that lowers their quality of life most of all is depression, they reach despair, and cannot be bothered asking questions.’ (Health psychiatrist 23). Some physicians believed that when patients in an unfavorable psychological state do not ask questions, they do not know about their problems that may lead to leaving problems unresolved and forgetting patients’ concerns. Cultural concerns were also highlighted by a majority of participants. Failure to ask questions about sexual matters, participation in treatment programs, dialects of patients from diverse cultures, gender mismatch of patient and caregiver, culture of a lack of awareness of their rights to information, and a lack of open communication were barriers to information seeking. A participant noted this issue with the following statement; ‘Lack of communication has roots in the culture. Patients are shy, and have poor communication skills. This is specific to our Eastern upbringing’ (Clinical Pharmacist 19). Confirming the clinical pharmacist’s comments, a patient said, ‘I don’t ask about sexual matters ‘cause such questions are not pleasant in our culture’ (Patient 25). Health literacy is necessary to information seeking. Some participants argued that due to a lack of specialized medical knowledge and English language skills, they were unable to read the health literature. A patient with heart disease described his experience as, ‘Since I couldn’t understand the medical books, I didn’t succeed in finding out why I had a heart attack with a 50% obstruction.’ (Patient 1). Some considered that living in rural areas and aging were additional obstacles to health literacy. The timing of information that was provided was also an important factor. Four participants considered the time prior to surgery and angiography, due to the stressful surgical atmosphere, inappropriate for asking questions, and preferred to avoid asking for information. Two others stated that they did not have the right opportunity to ask questions. One of the family caregivers in this respect said, ‘Conditions prior to surgery were not the right time for asking questions. They even showed a film of it in a class, and he (husband) felt sick’ (Family Caregiver 20). Discussion Based on participants’ experiences, five themes (‘poor quality of information provision,’ ‘mutual ambiguity,’ ‘beliefs and faith,’ ‘routine life to obtaining information,’ and ‘conditions governing information seekers’) emerged as the main obstacles to health information seeking for patients with cardiovascular disease. The results of this study showed that these obstacles cannot be viewed in isolation, but are intertwined with characteristics of the health care system, the media, family, and conditions governing information seekers such as; cultural, social, mental-psychological, beliefs, and understanding of heart health. A number of findings of this study such as inadequate information of written sources, poor media performance, discrete interdisciplinary communication, and the role of the medical training infrastructure add new information to the literature regarding information seeking among Iranian patients. These findings could indicate that Iranian cardiac patients have limited access to learning opportunities. Although Iran’s broadcasting organization has established a health network to respond to the community’s health information needs, there is a paucity of selfhelp/peer support groups, and this lack of learning opportunities for patients and families is deeply felt.


Some studies in Iran have indicated that establishing voluntary organizations such as the ‘Heart Friends Society’ and the implementation of community-oriented interventions could make an important contribution to patients’ ability to access information.7 Some patients in this study did understand the importance of these types of centers, but due to a lack of home-grown societies, had joined foreign scientific societies like the ‘New York Heart Academy.’ Participants infrequently cited barriers to Internet information search, which may be due to their lack of adequate experience in using the Internet and the challenges it involves. In a survey conducted in Iran, it was found that, although nearly 80% of hospitalized patients (urban and rural) wanted to obtain medication and self-care information through information technology, 60% did not have access to the Internet.37 Some other findings such as inadequate information provided by health professionals, or disruption in information communication between health care providers and patients have been reported in other studies in line with the present study. Liljeroos et al identified another barrier might be deficiencies in nurses’ communication skills. When the nurse merely delivered information about MI and lifestyle changes without involving the patient as the owner of the problem, it was hard to find motivation for lifestyle changes.38 It had been identified in an earlier study that the traditional training of health care providers, due to its inappropriateness to real life events does not support practical self-care skills in patients with heart failure.39 In other studies, restricted access to health services such as caregivers’ time constraints, inefficiency in patient referrals, difficulty for patients to have contact with their doctor,12 poor communication between patients and caregivers due to cultural differences,40 lack of information provided in relation to drug sideeffects by doctors, nurses, and pharmacists,29 health professional authoritarianism,26 a health care system not based on a preventionoriented approach, lack of health care providers’ specialized knowledge in prevention behavior counseling, were all suggested as obstacles in seeking information.41 Siouta et al also reported that consultation between patients with atrial fibrillation and staff in is driven by a medicine-based agenda.42 This point is also raised in a study by Alavi, which found that in the cardiac rehabilitation unit, information is primarily provided through a booklet in the Persian language, rendering it difficult to understand for non-Persian ethnicities.14 In the current study, participants mentioned mutual ambiguity between receivers and providers of information. Ambiguous information can induce people to perceive the cognitive inconsistency between what the message says and their personal belief. When two cognitions do not accord, people experience dissonance, a negative emotional state that people try to avoid.43 In another study, it was found that nurses and doctors, as a result of their families’ request, do not disclose the diagnosis of the disease to the patient, therefore the patient is discharged in a state of confusion, and does not make an effort to engage in follow-up care.13 Conflicting information is concerning because it has been found to decrease medication adherence and is associated with worse perceptions of care among patients, increased anxiety, altered risk perceptions, and decreased ability to assess the reliability of information sources.44 Some patients in this study had a positive attitude toward traditional foods and herbal medication, hence the reason for patients’ confusion could have been due to patients personal knowledge coming face to face with that of health professionals,45 which could somehow be indicative of the contrast between tradition and modernity in this society. Patient exposure to conflicting information and resulting confusion could be indicative of the patients’

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style of information seeking in the present study, because research has shown that active seekers are more likely to be exposed to conflict, as they scan different information from various sources.45 On the other hand, health care providers, due to a lack of awareness of the latest medical evidence, fear of non-compliance with treatment, a lack of patient confidence, lack of a common language between health care providers, and a lack of skills for giving information associated with various treatment options, are faced with challenges such as hiding information related to the patient’s prognosis and potential risks. In a recent study, cardiac care providers expressed concerns associated with the unpredictability of prognosis and the trajectory of the disease as reasons for a degree of confusion related to discussion about the patient’s future.12 Inadequate interdisciplinary cooperation with the provision of consistent information and ambiguity over roles between health care providers, and a lack of ‘perceived role responsibilities’ to provide medication information by doctors, nurses, and pharmacists have been reported as problematic,29 as noted in another study.31 These findings suggest that in care settings in Iran, governance by the paternalism model and conflict between the health team, has led to conflict and ambiguity for the patient on the one hand, and to marginalization of the nurses’ role on the other. Beliefs, faith, and expectations were the next obstacles to acquiring information, and these findings were consistent with studies in other countries. For example, unfair and stereotypic judgments by doctors about race and culture prevented the giving of information to Afro-American women.24 These health care providers’ inaccurate beliefs could mean inequality of communicationinformation and marginalization of some patients because of their identity. Other studies conducted in Iran have shown that, cardiac patients, due to religious beliefs rooted in Islam, consider their plight as divine destiny and fate, and with such a belief, they reluctantly make the effort to listen to education attempts by the nurses.13,30 Agard et al showed that the majority of participants had not requested information related to their prognosis because they believed that knowledge of a prognosis does not alter the reality of death. For others, maintaining hope and enjoying life were the reasons for not seeking information about their prognosis.46 These findings suggest the importance of and respect for self-autonomy, as the basis for honoring the patients right to know and the choice of not wanting to know.46 Perception of risk and feelings of insecurity prompt patients to seek information. St. Jean showed that diabetic patients in a static phase or pre-diagnosis did not feel the need to look for information.26 However, the appearance of initial symptoms in prompting this study’s participants to find information supports Johnson’s claim (1997) that ‘salience’ is the principle motivating force in information seeking.26 In a health belief model, understanding predisposition and the seriousness of the threat are considered effective factors in health behaviors.47 Additionally, Iranian patients often neglect seeking health information because they give priority to their family roles and wrong beliefs about healthy lifestyles.13 In this study, it was identified that a patient’s decision to seek information is mainly influenced by society, economy, culture, timing, emotional reactions and perceptions. However, in Jean’s study, in addition to the above, social stigma and other co-morbid diseases, and diabetes not being seen as a priority, were reported as obstacles in obtaining information.26 Also, in other studies, gender, poverty and a lack of health insurance (health inequity indicator) were mentioned as important obstacles in information seeking.25 In the present study, gender differences were not proposed as a barrier to obtaining information, but the role of treatment costs was significant. In Iran, although the majority of

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patients are covered by health services insurance, insurance companies do not bear patient’s counseling costs, and after discharge, many cardiac patients do not attend counseling centers in cardiac rehabilitation centers because of the cost.14

health care decisions and improved self-management, in order to provide comprehensive and practical information which is based on evidence that is compatible with personal culture and preferences.

Limitations

Acknowledgments

For a deeper understanding of potential obstacles in heath information seeking of cardiovascular patients in Iran, a qualitative method was used. Therefore, it has limited generalizability and the findings of this study are specific to Iranian patients and the health care system in Iran. Thus, it is recommended that a study of obstacles and the process of health information seeking in cardiovascular patients be conducted in other communities and ethnicities. Furthermore, given the highlighted role of families in information seeking, it is recommended that in future research into family caregivers’ experiences should be studied using a greater sample size.

The authors wish to express their gratitude to all participants and the Research Deputy of the University of Welfare and Rehabilitation Sciences and Tehran University of Medical Sciences.

Practice implications The results of this study not only confirmed the importance of providing information, but also identified that in this process, there are specific methods for optimization of information provision for cardiac patients and improved self-management and enhanced health knowledge. Thus, given the non-collaborative organizational culture in care settings in Iran, an interdisciplinary teamwork approach to producing consensus-based guidelines could be helpful.31 The results also indicated that perhaps there is a need for a position titled, ‘cardiac information provider’ in Iran’s health care system. This cardiac care information specialist should be available for patients, in order to help them assess their information beliefs, needs, planning, and use of the information. In some studies, this role is more clearly defined for nursing practitioners. An important finding of the present study was patient’s ambiguity and lack of ideal information communication between patients and health care providers. Therefore, the following is recommended for future studies on informing cardiovascular patients. To address communication research in the context of cardiac care, future research should focus on and explore the effects of patient-health care providers communication on relevant patient outcomes (e.g., satisfaction with information services, understanding and recall of information, psychological distress), and related cultural differences. Furthermore, it is recommended to consider developing an instrument to measure perceived ambiguity for health information in Iranian cardiac patients. Moreover, future research should focus on developing and testing patientcentered information that addresses the unique preferences of patients with cardiovascular diseases. Conclusion The findings of this study showed that health information seeking is a behavior that occurs as a result of belief influences, and the interaction of the patient and family caregivers with various information sources, especially communication with health professionals where care and information are provided. In this study, based on the experiences of cardiac patients, family caregivers, and cardiac care professionals, the obstacles in accessing health information were explained through five themes of: ‘poor quality of information provision,’ ‘mutual ambiguity,’ ‘beliefs and faith,’ ‘routine life to information seeking,’ and ‘conditions governing seekers.’ Understanding the nature of the obstacles in health information seeking will help both policy makers and health professionals, in line with cardiovascular patients’ participation in

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