Introduction
Health description goes beyond the absence of disease or illness and includes complete physical, mental, psychological, and social well-being [1]. Health promotion refers to empowering people to increase and improve control over their health. This process requires a variety of interventions [2]. However, various issues affect a person’s ability, including the low vision that reduces a person’s abilities in multiple dimensions [3 ,4 ,5, 6, 7]. Visual impairment is caused by various factors, including diseases [8]. One of these diseases is hereditary Retinitis Pigmentosa (RP), which is an incurable disease. RP causes progressive visual weakness and eventually blindness due to the destruction of rod and cone cells in the retina [9, 10].
The onset of RP reduces the ability to perform daily activities, increasing the risk of physical injuries such as falls, anxiety, depression, job loss, and reduced financial income. In other words, it will threaten patients’ overall health [11, 12, 13 ,14, 15, 16]. The global prevalence of RP is estimated at an average of 1 in 4000 people [9]. Its prevalence in Iran is about 70000 people [17]. Because RP patients face various health problems due to low vision, empowering them to manage issues, achieve independence, and improve their health in the care program is essential. We need to discover the problems of these patients in different dimensions of health. In this regard, various studies have examined the problems of these patients. Simarasl compared the challenges of Iranian patients with that of Swedish patients in a qualitative research study. 
The findings of this study depict issues such as the social isolation of patients and their deprivation of social services [17]. Results from several other studies also address a number of problems in these patients, including anxiety and depression, job loss, and restrictions on daily activities [18 ,15 ,11]. However, the findings of these studies report a few dimensions of the health problems of these patients. To design a proper care plan, it is necessary to explore the problems of these patients deeply.
On the one hand, people’s experiences of illness and disability are always influenced by their individual and environmental contexts [19], so it is challenging to extend the patients’ experiences of living with the disease to other environments and cultures. On the other hand, a few studies have been conducted to discover patients’ experiences with RP in Iran, and there is a lack of knowledge to explore the challenges of these people in living with the disease in Iranian society. Thus, it is essential to design an appropriate care plan to solve patients’ health problems considering their needs and issues in the environment in which they live. This study aimed to explain the experience of Iranian RP patients in living with the disease. 
Materials and Methods
Study plan
This study was a qualitative study conducted in the Institute for Support of Patients with RP in Tehran from March 2019 to March 2020. This study was conducted in accordance with the Helsinki Declaration [20]. To observe ethical principles, we obtained consent from participants, maintained their independence, obtained permission to record interviews, and kept the collected information confidential.
Data collection method
Participants were included in the study by purposive sampling method. To gain depth of people’s experiences, we tried to interview people in different stages of non-syndromic RP disease with different degrees of visual impairment (from mild to severe). First, the purpose of the study was explained to the patient, and after reading the consent form and obtaining informed consent, the interview was conducted. Eleven patients were included in the study, and 12 semi-structured in-depth interviews were conducted (one person was interviewed twice). The interviews were face-to-face and lasted 30 to 120 minutes with an average duration of 70 minutes. Data collection continued until data saturation. Some questions the participants had to answer were as follows: Explain how your RP started and life story went despite your illness? and What were your worries and feelings about dealing with the various issues in your life during your RP? Interviews were then conducted based on participants’ responses.
Data analysis
The conventional content analysis method was used to analyze the data [21]. Based on the technique of continuous comparison, each category of similar code consisted of subclasses. Then, by comparing all the subclasses with each other, classes were created from each category of similar classes. As the comparison progressed, all similar classes came together to form larger classes. Until the end of the analysis process, the comparison of codes, subclasses, and classes continued in a cyclical manner. MAXQDA software version 2018 was used to organize the data.
Data rigor
Based on the credibility of the findings, dependability, confirmability of the information, and transferability of the data rigor were performed [21]. The analyzed information was provided to the participants for review and approval to verify the findings. To evaluate the dependability, we offered the extracted results, categories, and themes to other members of the research group and experts familiar with qualitative research for peer check and revision. To confirm the information, the researcher tried to put aside his opinions and prejudices about the subject as much as possible. Finally, to provide transferability, a rich description of the study findings was provided. 
Results
Eleven patients with RP participated in this study (Table 1).


From the analysis of the collected information, the main categories of “perceived health threat” and “perceived support needs” were extracted. Table 2 presents the components of these classes.


Perceived health threat
Low vision due to disease threatens patients’ health by weakening their different abilities in various areas: Patients have always perceived a decrease in their abilities in different dimensions.
Gradual degradation of physical fitness: Low vision, impaired visual function, impaired motor ability, inability to perform daily tasks, and physical injuries have resulted in patients’ abilities. For example:
“When I was studying at university, I could not see the board well; I could not see my front many times.” (the fourth participant)
“I am very slow; I am going to work hard; it takes me longer to do something. I can no longer do personal things like nail-biting.” (the sixth participant).
“RP has reduced my physical strength. For example, taking care of a child is as difficult for me as it used to be.” (the second participant)
“I constantly fall; once I did not see my front, I fell into a hole, and my hand broke.” (the seventh participant)
Constant fluctuations in mental health: This subcategory refers to constant and intensely variable psychological pressures for patients. After a while, they became nervous. After knowing about the disease, they may cry, show severe anxiety, and stop daily activities. They are in a state of emotional shock. Resolving these states does not mean preventing the psychological damage. They always experience self-harm, disgust with a disability, fear of harm, fear of the future, aversion to compassion, failure in interactions, boredom with illness. 
“When the doctor told me that I have RP, I did not eat or drink for three days; I was stressed. I was just drinking water; I was distraught.” (the third participant)
“I feel like RP is destroying my beauty, I am losing my spirit, my pride is breaking, my self-confidence is low.” (the fifth participant)
“I am afraid to go out at night because I do not see, and thieves may attack me.” (the sixth participant)
“I am very sad because in the future I may not see the world, I can no longer do my job, I will be a burden to my family.” (the eleventh participant)
“Many times in the parties I attended, people around me said loudly, Be careful, there is a cup of tea in front of you. I was upset; their behavior was very annoying to me.” (the second participant)
“Sometimes I get nervous, and I say oh my God, what a sin I did to get this disease.” (the eighth participant) 
Weakening of social competence: Low vision weakens the social competence of patients in various fields. Participants were faced with the problem of reduced ability to perform professional activities, the impossibility of continuing education, and reduced economic income. 
“Illness has limited my career; it has taken away my business trips; it has limited my economy.” (the third participant)
“This disease has marginalized me. I have few friends. I no longer participate in team sports like football like I used to. I wanted to study for a doctorate, but I could not because of illness.” (the sixth participant)
“When I found out I had RP, I resigned my job; I do not sew anymore, I do not know what to do at the moment.” (the fifth participant)
Perceived support needs 
The limitations of illness create a variety of needs for patients, such as access to welfare facilities, employment, and loans, the need for self-care, learning how to improve social skills, need to receive psychological support such as hope and love from others and the need to have a supportive companion to do daily activities. 
“It is difficult for me financially; I need financial support to take care of my work; if the government lends us money, it would be better.” (the tenth participant)
“Doctors should give me advice, for example, what to do to prevent the disease from progressing; this is the minimum I expect from a doctor during a visit.” (the second participant)
“We patients need to be trained, for example, a psychologist or social worker should plan for us according to the low vision process, to identify our abilities and interests so that we can succeed.” (the first participant)
“I expect doctors, for example, to say that research is being done instead of telling us that we do not have treatment at the moment, which is very disappointing for us.” (the second participant)
“I am looking for someone to help me with different tasks because it is difficult for me to do things alone.” (the ninth participant)
Discussion and Conclusion
The present study’s findings showed that low vision reduces patients’ physical abilities. They experienced issues such as night blindness, reduced mobility, and the encounter with environmental barriers. In other studies, RP patients have experienced falls and collisions with environmental obstacles [15 ,13, 16]. Paying attention to these findings raises the need to provide rehabilitation services to these patients. In the study of Li et al., patients’ rehabilitation in performing activities was one of the needs of people with low vision [22]. Findings of other studies have also shown the positive effects of rehabilitation services on improving the quality of life and physical ability of people with low vision [23, 24]. In another study, training in orientation and mobility skills effectively promoted the safety of people with low vision [25]. Low vision affects the mental health of patients. In this regard, various studies have reported anxiety and depression as the main psychological challenges of RP patients [11, 26]. Thurston et al. identified fear and loneliness as other issues [27]. Senthil et al. showed that RP patients are always worried about future blindness [15]. However, the present study results illustrated a wide range of patients’ psychological problems in their lives. Psychological shock following the news of illness, low self-esteem, distorted mental image, unpleasant feeling from the judgments of others, fear of harm, fear of future blindness, aversion to the pity of others, resentment over the ridicule of others, and unhappiness from getting sick were some of the issues that study participants experienced. Therefore, it is necessary to carry out extensive interventions in the field of psychological support for these patients.
Poor social competence is another consequence of low vision. The participants faced reduced interaction with others, inability to continue their education, loss of marriage chances, job loss, reduced economic income, and loss of social independence. Simarasl study results showed that RP patients quickly lose their chances of employment and marriage. In another study, RP patients reported loneliness and failure to pursue goals in the future [27]. This finding highlights the need to pay attention to the social problems of these patients and provide opportunities to improve their social competencies. The need for support was one of the new findings of this study. In this regard, the participants expressed their needs in relation to access to amenities such as transportation facilities, a safe physical environment for traffic, the support of organizations for employment, and financial support.
The results of the Simarasl study showed that Iranian RP patients suffer from a lack of access to social resources and facilities compared to Swedish patients [17]. In other studies, job loss has been reported as one of the major problems of people with low vision [28, 29]. Paying attention to these findings indicates the need to provide social services for these patients. The need for education was another issue of the participants in this study. In the study of Nollett et al., the people with low vision also raised this need [30]. However, the present study’s findings showed a variety of dimensions of educational needs because they raised the need for education about the nature of the disease, how to improve abilities, and how to take care of themselves to prevent the progression of the disease. This finding makes it necessary to provide education to support these patients because educating patients is important for patients’ self-management [31]. The need for psychological support is another issue that participants expected from those around them. They expected to receive love and hope from others. In this regard, the debilitating nature of the disease always causes mental and psychological problems, which raises the need for psychological support for patients [11, 32 ,12, 33]. Participants mentioned the need for somebody to help with daily activities. In this regard, due to reduced ability to perform their activities, they feel the need for help from others to perform daily activities [15 ,13] In another study, older people sought help from others to perform daily activities [34].
Based on the present study’s findings, RP patients in Iran face the problem of reducing various abilities and the need to receive support. However, there is no care plan for these patients in Iran. Attention to this issue indicates the need to design a holistic health care program. By examining the health status, diagnosis, treatment, and prevention at all levels and with features such as self-management, the implementation of this program improves patient health [35]. Considering the problems of RP patients, it is essential to have multidisciplinary cooperation. It is suggested that health officials, through the employment of various health group members, provide comprehensive services for the patients. It is recommended that future studies be conducted to design and implement care models for patients with RP. Because the findings of this study are based on the actual experiences of RP patients, its use is helpful in diagnosing health concerns and problems, designing a care plan, and implementing interventions to improve their health. 
Study limitations
This study was performed in Tehran City, Iran, and patients in different cities could not be reached. Although efforts were made to maximize the diversity of participants, access to illiterate people was not possible. 
Conclusion
RP disease threatens patients’ health due to low vision. Some of the experiences reported by these people are the reduction of physical capabilities, instability of mental and psychological status, degradation of social competencies. Also, receiving various support from others was another experience of these people. To improve the health of these people, it is necessary to develop a holistic and context-oriented care program by the health team. 

Ethical Considerations
Compliance with ethical guidelines
This study was approved with the ethical ID code IR.TUMS.FNM.REC.1397.172, obtained from the Joint Organizational Ethics Committee of the School of Nursing and Midwifery and the School of Rehabilitation of Tehran University of Medical Sciences. To observe the principles of research ethics, the independence of the participants was maintained in the research by assuring them that they were free to participate or leave the study. The purpose of the study was explained to the participants, and they provided written, and oral informed consent and all information collected was kept confidential by the researcher.

Funding
The paper was extracted from the PhD. Thesis of Masoumeh Malek, Department of Internal Surgery, School of Nursing and Midwifery, Tehran University of Medical Sciences, and funded by the Vice Chancellor for Research, Tehran University of Medical Sciences. 

Authors' contributions
Conceptualization, analysis, methodology, editing, and final approval: Masoumeh Malek, Mohammad Ali Cheraghi, and Shokooh Varei; Investigation and drafting: Masoumeh Malik; Visualization and validation: Masoumeh Malek, Mohammad Ali Cheraghi, Shokooh Varei, Mehdi Norouzi, Amir Hossein Mahmoudi; Project supervision and management: Mohammad Ali Cheraghi, Shokooh Varei, Mehdi Norouzi, Amir Hossein Mahmoudi; Financing: Masoumeh Malik, Shokooh Varei.

Conflict of interest
The authors declared no conflict of interest.

Acknowledgments
We sincerely appreciate the cooperation of all RP patients. We also thank the members of the RP Support Institute, the School of Nursing and Midwifery, and the Vice Chancellor for Research, Tehran University of Medical Sciences.

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