The concept of health-related quality of life (HRQoL) is a highly subjective nebulous term that is interpreted differently by people depending on their social, cultural and political backgrounds. Its actual meaning and conceptualization are lacking within the Saudi context, as there is little consensus on what it actually means. Hence, the current study aimed to explore the concept of HRQoL as interpreted by patients with end-stage renal disease undergoing hemodialysis in Saudi Arabia. This exploration provided an overall definition of the concept and identified its key domains that were structurally conceptualized.
Definition and subjectivity of HRQoL
The subjectivity of HRQoL was illustrated in the study findings, as each participant defined the concept from his or her own perspective and what is considered important in their lives. This explains the different definitions that emerged during data analysis. This is congruent with Ferrans and Powers  conceptualization of QoL, who considered satisfaction with life domains of importance to the individual.
Different definitions for the concept of HRQoL emerged from the interviews. Participants defined the concept from different perspectives, including health status, socialization, psychological wellbeing, religiosity, financial income, needs satisfaction and the quality of healthcare services. This reflects the subjectivity of the concept.
In terms of health status, the majority of the participants defined HRQoL as the optimum level of health and the freedom from hemodialysis and its complications. Psychological wellbeing was another aspect that was used to define the HRQoL concept. Terms such as life satisfaction, achievement of life goals, happiness and hope were used repeatedly during the interviews. financial income, satisfaction of needs and the quality of healthcare services were also highlighted when defining the HRQoL concept. Need satisfaction with reference to Maslow’s hierarchy of human needs was used to conceptualize the QoL concept by Sirgy , who emphasized that needs satisfaction is the key element for a better QoL of societies. These findings are in line with several studies’ who defined QoL in terms of the effect of illness and its complications on different life domains [15, 19, 21,22,23],
Socialization was considered when defining the concept of HRQoL in terms of social relationships, social activities, social support and playing the expected social role. These terms reflect the Saudi cultural backgrounds where social relationships and bonding are important. Patients on hemodialysis are affected by their illness and its treatment, which prevents them from participating in social activities such as attending family gatherings and social celebrations. This approach of defining the concept of HRQoL with respect to socialization was not synthesized in the literature, as socialization was considered a domain rather than being utilized for defining the concept. However, social support was illustrated in the Ferrell, Wisdom  definition for QoL, which may be due to the target population of his study, i.e., patients with cancer, who need support from key persons in their lives to cope with their illness. Similarly, in the current study, patients on hemodialysis required social support from family members and friends to overcome difficulties they anticipate during their illness experience.
Religiosity was one of the emerging themes when defining the concept of HRQoL. This was observed when using religious concepts such as belief in God, destiny and fatalism. In addition, participants referred to the ability to participate in religious worship, such as praying, fasting and participating in charity activities. In contrast, the Western conceptualization of the concept of HRQoL included religiosity/spirituality as key domains but not merely the definition of the concept [19, 25]. This difference between this study finding and the literature might be due to the nature of Saudi culture, which is dictated by the Islamic religion. People practicing Islam believe that returning to religion is one of the methods to cure their disease and to accept and cope with their illness. Additionally, they start to prepare for death and the afterlife by becoming more religious. These Islamic beliefs might be the reason behind considering religiosity when defining HRQoL. This finding is congruent with the Western literature discussing the role of religion in coping successfully with health concerns  and the relationships between spirituality and QoL for patients on hemodialysis .
Several definitions emerged from the study findings that reflect the subjectivity of the concept. Considering the definitions in practice, it can be convenient to generate an overall definition that considers different aspects that were used to define the concept:
HRQoL is personal satisfaction with health, social, psychological and financial status, religious performance and the provided healthcare services for patients on hemodialysis.
That definition included all dimensions that were discussed by the study participants. Additionally, it reflects the subjectivity of the concept, as it views quality of life in terms of personal satisfaction with different life domains. This definition is in line with the Saudi Centre for Evidence-Based Healthcare , who considered quality of life as an outcome indicator of healthcare. Additionally, the center provided a definition for HRQoL, indicating that it is defined as physical, mental and social wellbeing .
Conceptualization of HRQoL
The study findings revealed five domains to conceptualize HRQoL. These are the physiological, psychological, social, religious and vocational domains.
Theme one: physiological domain
The physiological domain theme was developed after discussing health status with the study participants. The health status was presented in terms of the effect of illness and its treatment on the general health of the patients. These include but not limited to physical ability, pain and sleep disturbance which are found by multiple publications in the literature [30, 31].
Many indicators for the physiological domain were found to be important and affect the quality of patients’ lives (Table 4). One of these indicators of the physiological domain is the physical ability, which reflects the patient’s ability to perform certain activities, such as walking, self-care, and climbing stairs. When interpreting those findings, the physiological domain with its indicators is similar to those in the Western QoL/HRQoL models [10, 17, 32, 33] and is considered as an essential domain assessed in several QoL instruments such as The Kidney Disease Quality of Life Short Form .
Theme two: social domain
Moving to the social domain of HRQoL, three determinants define this domain: social relationships and activities, playing the expected social role and social support. These indicators were discussed and considered in defining the concept of HRQoL. This might be due to the Saudi social background, which is characterized by the social system and strong family bonds, as reflected in the study by Al-Jumaih et al. . In comparison with the Western literature, the social domain was identified in the City of Hope Model by Ferrell et al.  in terms of caregiver burden, role and relationships, affection/sexual function and appearance. The socioeconomic domain was considered by the Ferrans Model (1996), specifying social relationships and emotional support. The findings in the current study uncover a minor difference between the social dimensions defined in the Western QoL/HRQoL models and the social dimensions of the current study. One example of this difference is playing the expected social role, as gender variation appeared during the interviews. While men were concerned with securing their family’s financial needs, women held themselves responsible for family stability. These findings are in line with a study finding by Abdel-Khalek , who discussed the identified roles of men and women living in Arab countries. In contrast, the Western models lacked this gender variation when individualizing the concept of QoL/HRQoL.
Social activities, one of the indicators of the social domain, were discussed with reference to the Saudi cultural build-up that differs when compared with the Western community. Conversely, social support was discussed within the Western literature, as it is an expected social norm within different cultures. In Saudi Arabia, the social system obligates confinement to social responsibility among community members. This responsibility is in terms of social support physically and emotionally in addition to social relationships and activities.
Theme three: psychological domain
The psychological domain was identified by patients on hemodialysis and is determined by life satisfaction, feelings of low mood, anxiety, fear and body image disturbance. It was found that gender variation was apparent in the study findings, as female patients were concerned with body image disturbance, and male participants discussed their frustration caused by their failure to secure their family’s needs. Body image is a concern that affects patients on hemodialysis, which is supported in the literature by Muringai , Lin et al.  and Padilla .
Fear was also another psychological concern that was discussed by participating patients. Their concerns were fear from the unknown, fear of disability and dependence on others and fear of failing to secure family needs, which was obvious in male participants who held themselves responsible for their family members’ wellbeing. This finding is in line with findings of Lin et al.’s study. Furthermore, QoL/HRQoL Western conceptual models included fear as an indicator within the psychological domain [36, 41].
Theme four: religious domain
Religiosity was considered a key domain in the current study, and it was defined in terms of the ability to perform religious worship and religious beliefs that help patients cope with their illness and live a successful illness experience. Similarly, the Western QoL/HRQoL models considered religiosity/spirituality as a domain of the concept of QoL [13, 21, 36, 41]. Despite this similarity, the indicators differed from those in the current study. Examples of this variation is the use of terms such as “inner strength, conviction and life goals, faith in God and trust in God”. These differences may be due to the religious backgrounds of the Western communities where these models have been developed and conceptualized. Compared with the current study participants, whose religious background is Islam, spirituality is not a term in everyday language. Hence, it was not used when defining religiosity.
The second difference is the indicators of the religious domain that appeared in the current study. One indicator was religious beliefs, including belief in destiny, clearing sins through accepting illness and rewards in the afterlife. The other indicator was the ability to perform religious worship; for example, fasting is interrupted during the hemodialysis procedure. These beliefs and practices build up the religion of Islam. Hence, they were apparently expressed by the current study participants.
An interpretation of these findings is that the majority of the study participants practiced Islam as a religion and a way of life, and their responses to defining and conceptualizing the concept of HRQoL were influenced by their religious background, which helped them cope with their illness and live a positive life experience. However, there is a limited body of literature investigating religiosity and QoL and their relationships in Muslim communities; hence, interpreting this finding is difficult. Additionally, religious background must be considered when assessing QoL using instruments of Western origins in a Muslim community.
Theme five: vocational domain
The ability to work, employer support and financial security determined the vocational domain in the current study. The patient’s ability to work during hemodialysis is impaired due to their physical limitations. This impairment affected the sustainability of their jobs, as they either retired early or quit their jobs because they were unable to commit to a full-time career. These decisions are influenced by employers’ support, as patients working in the governmental sector in Saudi Arabia had better support than patients working in the private sector. Patients on hemodialysis are offered an off-day on their dialysis days without deduction of their salaries following the Royal order to consider their dialysis day as a paid off-day. However, this is practiced only in the governmental sector and not in the private sector. This affected their financial income and the financial security of self and family, as observed in male study participants in particular.
Socioeconomic indicators, including occupation, education and income, were considered in QoL/HRQoL models developed in Western communities [15, 17, 25, 41] with respect to the different socioeconomic statuses of Western countries and the governmental influence on that domain.
Conceptualization of the HRQOL model for patients on hemodialysis in Saudi Arabia: renal-specific versus culture-specific domains
The current study conceptualized the concept of HRQoL for patients on hemodialysis in Saudi Arabia (Fig. 1). Five domains defined HRQoL, and those domains were interrelated with each other and influenced HRQoL overall. In order to conceptualize the concept, the key domains were identified and the relationships between the domains were specified with the arrows direction. A review of existing QoL/HRQoL models was performed to guide our conceptualization.
It was found that the psychological domain was centralized within the model and was affected by the determinants of the other domains and it had a direct influence on HRQoL. There is a direct relationship between the religious, social, physiological and the vocational domains and the psychological domain. Furthermore, there is direct relationship between the psychological, social and religious domains and the HRQoL. This finding is supported by WHOQOL SRPB Group  study who found apparent relationships between SRPB and the psychological and social domains of QoL. Likewise, Abdel-Khalek  found a significant positive correlation of religiosity and subjective wellbeing and QoL. In contrast these relationships were lacking in some of the reviewed western models other than, Ferrell et al. , Grant et al.  and Wyatt and Friedman .
Furthermore, some of the domains were culture-specific, i.e., Saudi-specific. These included the social domain, the religious domain, and the vocational domain, which were apparently influenced by the Saudi cultural backgrounds, as discussed. Conversely, the physiological domain and the psychological domain are disease-specific (renal-specific) domains that are indicated by factors related to the disease and its treatment.
The difference between culture- and disease-specific domains is that the culture-specific domains are influenced by Saudi culture and will be similar in chronic illnesses other than renal failure, such as diabetes mellitus , hypertension  and hepatitis . However, the disease-specific domains were generated from issues and concerns related to the disease process, i.e., renal failure. Examples are the physiological consequences of renal failure, such as sleep complications and illness manifestations, as fatigue is shared among patients with renal failure from different cultures. Similarly, the psychological domain is influenced by the disease and its treatment, as patients complain of depressive symptoms, but patients with bronchial asthma suffer from anxiety . However, in the current study, anxiety was initiated from the fear of the unknown future. There is a need for culture-specific domains to define the concept of HRQoL within a specific society, as Kagawa-Singer et al.  determined the importance of culture in determining QoL, as culture describes the ways of achieving a good life and defines life within a set of values and beliefs. Furthermore, Corless et al.  emphasize that QoL instruments are valid within the social context where they have been developed. An example is the cross-cultural adaptation of the WHOQOL-100 instrument, which was developed after the exploration of the QoL concept across different cultures .