Exploring the meaning of care among lived experiences of patients with blindness: an interpretive phenomenological study^†

Hermeneutic phenomenology inspired the researchers to conduct this study. The focus of hermeneutic phenomenology is interpretive and the researcher tries to understand the meaning of lived experiences of one’s being in the world¹⁶. Accordingly, we explored the meaning of perceived care experienced by patients with blindness. The method introduced by van Manen¹⁷ was used to perform the study. This method contains six active and cyclical activities.¹⁸ Table 1 presents this method and its application in the current study.

A list of people with blindness having a history of hospitalization during the last year was obtained from the Iranian Society for Visually Impaired (ISVI) as well as from the health information manager of hospitals, and then the eligible people were invited to participate in the study. Phone calls were made with 25 possible participants and 15 people agreed to participate in the interview (male = 9, female = 6).

The participants were Farsi or Azari language speakers and were living in Ardabil or Tehran provinces. Tehran is the capital of Iran and Ardabil is a province in the northwest of Iran. The main inclusion criteria were having total blindness confirmed by formal medical records; and a history of being admitted in hospital during the last year. The included participants were free of any disturbing psychiatric or other physical condition that could change their life experience. Participants’ ages ranged from 20 years to 56 years (M = 40.53). People with only outpatient admissions were not included in the study. Participants were congenitally blind, or it had happened in early childhood. None of them could remember seeing with their eyes. The demographic characteristics of the participants have been presented in Table 2.

The study was explained to the participants on the first visit and activities such as recording the interview and obtaining the written consent were discussed with them, and the initial agreement was obtained. In the main interview sessions, semi-structured in-depth interviews were conducted to collect the data. Based on the participants’ preference, the interviews were conducted in the hospital or at their home, in a comfortable and quiet room. Each interview began with general questions such as “tell me please about your life” and then progressed to less general questions such as “Please talk about your story when you were admitted in the hospital.” The subsequent queries were more specific such as: “would you please talk about the challenges, worries and your communication with health staffs in hospital.” The interviews were recorded as audio files and immediately transcribed verbatim. Additionally, the interviewer took numerous field notes during the interviews which were analyzed along with the interview data. Transcripts were imported into the text analysis software, MAXQDA v10 (VERBI Software, Sozialforschung GmbH, Berlin, Germany). The duration of interviews lasted from 40 min to 120 min. Interviews were performed by the first author.

Data analysis was an inseparable activity throughout the study. Thematic analysis introduced by Max van Manen was used for data analysis. He suggested 3 techniques to draw out the meanings hidden inside a life story including a detailed line-by-line approach, a selective or marking approach, and holistic. In accordance with line-by-line and selective approach, the researchers carefully read and reflected on the words, phrases, and sentences, and asked: “What does this term or phrase reveal about the lived stories of participants in the hospital?” Answers were the primary codes or thematic units which gradually progressed to subthemes, themes, and finally the main themes. Besides, Holistic thematic analysis helped us to reflect on a whole interview, interviews, or all extracted themes to capture a whole overarching theme which is representative of the lived care experiences of the participants with blindness in hospital.¹⁹

To improve the trustworthiness, possible activities were performed during the study. All the interviews were conducted by the first author. The researchers especially the first author attempted to gain proficiency in phenomenology as the research method. Prolonged engagement with participants was an important credibility measure, which was carried out during the study. In-depth interviewing, reflective reading of the stories, writing reflectively, turning to the research question at any point of the study, and attempting to generate a rich description of the phenomenon were other measures to improve the rigor of the study. Collaborative analysis was another strategy we used to ensure credibility and 2 authors independently analyzed the data.²⁰ Finally, the main theme and the sub-themes were explained to 4 participants, and their feedbacks were used to refine the themes.²¹

The Institutional Review Board of Ardabil University of Medical Sciences (ARUMS) approved the study project (code: 9319.1393-11-21). We were adherent to ethical codes as stated in the Declaration of Helsinki to ensure the confidentiality and anonymity of the participants throughout the study. Before data collection, participants were fully informed about the study, and verbal consents were given. In the data collection phase or interview sessions a written informed consent form in the Brail system was obtained from all participants. In the consent form, participants were assured that the study would not affect their future caring plan and they were free to omit their data before data analysis, as well. To ensure anonymity, cardinal numbers were used to refer to the participants in the reports and publications.

The lived stories of the participants discerned that nurses play an important role in caring for clients with blindness; as far as the participants recognized nurses as an alternative for their own eyesight. In this regard, participants have stated points that show the importance of nurses’ existence in the caring environment. Participant 1 said: “here [hospital] nurses really are my eyes. I am not worry because they can see.”

Participants emphasized the need to receive full information about the physical environments. They prefer to receive a full description of the caring environment or clinical settings, and about the care they receive. Participant 5 expressed: “I am very expectant of my caregivers especially the nurses in the ward. Thanks to my God, they [nurses] explain everything that I don’t have information about them.” Participants emphasized receiving information about drugs, procedures, manipulations, injections, etc. Participant 2 commented: “I need full information about everything when I go to hospital. One day I asked him [nurse] to read the drug’s instruction sheet but she answered: no need! If they know I am blind and if they understand we need to know about everything which we can not to see they may do not refuse our requests like this.”

The first theme, “nurses the eyes of patients with blindness” suggests that nurses are the most important and key professionals for patients with blindness in the hospital where they have recognized nurses like their own eyes. This metaphor by patients about nurses primarily emphasizes on the fundamental role of nurses in helping and providing dependent care. In other words, in the absence of eyesight, people with blindness have to delegate some of the dependent care to be done by nurses. To meet this responsibility, nurses need to learn formal courses and practice the caring of visually impaired people.²² Looking at nurses as their eyes may partly be rooted in the educational and informative role of nurses and it can be more vital when there is a lack of educational content for visually impaired people.²³ In fact, the role of patient education is more important than its importance for the sighed clients. On top of that, proper access to information has been noted as the key factor in reducing health inequalities in providing appropriate health and social care for visually impaired people.²⁴ However, understanding visually impaired patients and providing individually appropriate care requires special competencies that nurses should acquire during the academic courses and in the in-service education. A prior study too, emphasized staff’s lack of skills as an important barrier for providing coordinated care for visually impaired people.¹³

Participants talked about their interactions with health professionals, especially the clinical nurses. They pointed out that patients with blindness are ignored by the nurses and other health professionals in the caring environment in various fashions. Participant 3 while very complaining, expressed: “my physician and the nurses think I am a disable person. When I came to the hospital the admitting nurse asked my health history from my sister while I was standing there alive!”. Participant 7 expressed: “I didn’t know at what time my nurse comes to my room and at what time leaves. It is better they inform me of their presence and the leaves.” Patients as human beings need to be cared for with dignity and respect.²⁵ In fact, inattention to patients with blindness by the health professionals in the caring moments is in contrast with the human dignity and holistic approach to clinical care. Participants emphasized that the main cause of negligence originated from the staff’s negative attitudes regarding people with vision loss. In addition, participants reported that health workers do not believe in the abilities of visually impaired people and may assume them as disabled persons. Consistently, in a prior study, blind patients expressed that they were viewed as disabled and incompetent persons.²⁵ In addition, there is a negative attitude toward disability among the general public, which can be the primary cause of the health staff’s negligence toward patients with blindness.²⁶

Being in ambiguity implies the experiences that mainly originate from the weak interaction of health professionals with the participants. First, participants stated difficulties about orientation and mobility that make them confused in the caring environment. Participant 11 who had diabetes mellitus, stated: “when I go to diabetes clinic nobody tells me about the clinic’s physical environment. I need to be familiar everywhere I go.” Participant 6 who was interviewed in the hospital, emphasized: “this is my first time admission in this hospital, here is a new place for me and it is better a person show the critical locations, doors and entries for me!”. Participant 7: “I know here is hospital and I have come for the surgery but I don’t know where the toilet is, and where is the nursing station.” Participant 11 said: “I admitted in a hospital, they fixed an I.V line on my arm but I didn’t know more about the solution was dripping to my vein.” Participant 14 expressed: “unfamiliar places are like a prison for me. I know I am in the hospital but it is only a name! Because I don’t receive any descriptions about places in the ward.”

Because of vision loss, patients with blindness need to obtain essential information about the physical environment as well as about the received care. Narrates of the participants showed that they have received clinical care without any mobility and orientation tours. Helping patients to be oriented about the hospital settings is an important activity that brings out the patients with blindness from vagueness. Based on the lived experiences of the patients with blindness a formal or routine orientation program has not been received by them in the hospital settings. Although people with blindness are usually familiar with walking with a white cane, they need to receive instructions about the indoor environment, as well as other essential activities including movement from bed to floor, finding drawers, and addressing different objects in the patient room.²⁷ However, a mini orientation and mobility ward tour should be included as part of the nursing care plan, because the hospital environment is usually new and unfamiliar for patients, particularly for patients who are admitted to the hospital for the first time.²⁸

The admitted patient with blindness should be oriented in relation to the spatial space of the admission room, the ward’s hall, the corridors, and other important locations such nursing station. In addition, the orientation needs to be ongoing and should be performed to notify the changes to approach the desired location safely.²⁹ However, the provision of orientation and mobility programs in the hospital acquires skilled personnel, particularly well-trained nurses. The findings of the current study showed no formal or informal orientation program for patients with blindness in which they described the caring environment with terms such as vague or ambiguous. Moreover, ambiguity about the hospital environment and treatment procedures can endanger the physical and psychological safety of patients with blindness.³⁰ However, a person-environment interaction assessment tool can help health professionals to better address the coping of visually impaired people in hospital environment.³¹

Narrates of the patients with vision loss discerned that they adjust to and control their lives by making an organized living environment and being disciplined in daily activities. Participants expressed that making an organized environment is a key self-care agent for being in the world. Alongside being disciplined and preferring to receive care in the disciplined hospital setting, the participants reported that they prefer to receive care from health professionals and nurses in an inappropriate and well-organized fashion. For example, participant 4 stated: “here [hospital] I need a well-organized room like the home I am living with my family. Unfortunately here [hospital] nurses and nurse assistants like to put my personal stuffs everywhere they like!”. Participant 5 stated: “everything in my room must be orderly arranged. Here I don’t feel any order or arrangement.’ Participant 6 has also expressed: “this is the way I am exist [being disciplined]. I can’t find everything by myself [by touching], so I expect from nurses and others to organize my room at least one time a day but this is only a wish!” Participant 8 was complaining about the inappropriate caring behavior of health professionals: “she [nurse assistant] usually comes to my room without knocking the door. Last night, I found a tray on the bedside table by my touch. I was alone and although I realized that it is a food tray with dishes inside but I did not eat it. The nurse, nurse assistant or anybody who come to my room, they should introduce themselves and their purpose for entering to my room. I don’t like silent hospital workers!”

Indeed, self-discipline is a fundamental coping mechanism or self-care agency in people with blindness in both daily life and unfamiliar environments such as hospital settings.⁷ Therefore, a well-organized patient room can improve blind patients’ independence as well as their satisfaction. Despite the patients’ emphasis on discipline and well arrangement of the patient room, they reported not enough orders in their room in the hospital. Hospital centers as well as health professionals need to make efforts to provide person-centered and coordinated care for patients with blindness.³²

Exploring the lived stories of the participants showed that inappropriate care can cause psychological reactions in patients with blindness. Data analysis showed that negligence at the caring moments, care without information, and other difficulties of hospitalization can negatively influence people with blindness in the caring environment. Sorrow, anger, and anxiety were the main psychological reactions to the inequities and stereotypical care that they had to perceive as a patient in the hospital. For example, participant 2 stated: “Really I am so angry today because they cannot to see me as a real patient.” Participant 13, a 40-year-old woman expressed his emotions as: “I am not comfort in this hospital; here I feel I am alone because the nurses only do their own tasks without speaking or interactions.” Participant 12 said: “there [hospital] I really had emotional pain because personnel did not like to appreciate my needs and my special condition.” Participant 15: “I had been depressed in the hospital; not for admission but for many free of respect behaviors. In their mind I was like a disable child who cannot care himself.”

While depression and anxiety have been reported as common psychological problems among visually impaired people, which needs special attention,³³ the current study discerned that inappropriate and stereotypical healthcare systems can cause additional psychological tensions that may disturb disease management and also worsen the clinical status of patients. Besides, vision loss has been reported as one of the most fearful health events, and a greater proportion of sighted people feel fearful when imagining blindness.^34,35 Moreover, there are contextual limitations that can cause psychological distress in patients, including limited access to healthcare and information, poverty, pity behaviors, inequity, social stigma, and mobility challenges.^7,12,35