Comprehensive Evaluation of Patient-Centered Care at Cancer Center: A Qualitative Descriptive Study
Abstract
Background: Patient-centered care (PCC) plays a significant role in achieving patient and organizational outcomes such as enhancing providers’ reputations, enhancing productivity and morale among providers, ensuring effective resource allocation, and decreasing expenses and costs. This study aims at evaluation of PCC in oncology settings from patients, healthcare providers, and family members’ perspectives alongside with clinical observation.
Method: The study employed a qualitative multimethods design utilizing purposive sampling. Semistructured interviews were conducted with patients, their families, and healthcare providers to gather diverse perspectives. Additionally, alongside with the interviews, the study involved conducting clinical observations within the patient unit. A hybrid thematic analysis approach was employed, combining both deductive and inductive methods. Deductive content analysis focused on examining predefined themes informed by existing literature, while inductive analysis allowed for the identification of emerging new insights and emerging patterns.
Findings: This study showed that oncology patients had good experiences with most of the Institute of Medicine PCC domains. However, clinical observation showed that some things could be performed better, like how responsive and communicative the staff was. The frontline healthcare providers emphasized facilitators like proper training and clear policies, while also identifying barriers like workload and differing patient needs.
Conclusion: The comprehensive evaluation affords healthcare leaders valuable information to enhance PCC within the oncology context. This paper discusses targeted strategies to improve PCC.
1. Introduction
Patient-centered care (PCC) is defined by the Institute of Medicine (IOM) as “care that is respectful of and responsive to individual patient preferences, needs, and values,” and that ensures “that patient values guide all clinical decisions” [1]. PCC enhances effective, shared decision-making and maintains collaboration between healthcare providers, patients, and their families to result in an individualized and comprehensive care plan [2]. Literature has identified the significant role the PCC plays in achieving patient satisfaction and healthcare outcomes for many long-term conditions, such as depression and anxiety [3–5], endocrine outcomes [6–8], and cardiovascular risk management [9–11].
Furthermore, prior studies have demonstrated the positive impact of PCC at the organizational level. Schwedt et al. [4] and Yu et al. [5] found that PCC makes patients more involved in their treatment, which improves treatment outcomes, boosts the organization’s reputation, and lowers treatment costs. Similarly, PCC positively improves workplace productivity and morale, ensuring effective resource allocation and lower expenses [2, 12, 13]. As well, PCC initiatives improve patient’s safety. For example, Rossiter et al. [14] found that PCC programs decrease the rate of falls [2, 12, 13].
Because of these advantages, patients should be able to move quickly and easily between healthcare settings with the help of accurate, up-to-date, and trustworthy information. They should also be able to get information that is easy to understand about their care, diagnosis, treatments, prognosis, follow-up, and other support services. Furthermore, healthcare providers must address patients’ emotional and spiritual concerns, such as anxiety, fear, and financial impact [2, 13].
A qualitative or quantitative approach can evaluate the perspectives of patients, family members, healthcare leaders, and healthcare providers regarding PCC [15–17]. Liang et al.’s [18] research on oncology shows that the main things that improve PCC are easy access to information, continuity of care, supportive self-care processes, good coordination of care, good referring and triaging processes, managing symptoms, and treatment guidelines. Correspondingly, Giordano et al. [19] showed that standardized care pathways play an important role in enhancing PCC. Moreover, Jayadevappa et al. [20] added that patients without depression were more likely to perceive the positive features of PCC.
After summarizing the benefits of PCC, it is important to recognize that despite these benefits, there are a variety of barriers that can hinder its effective PCC implementation. We can broadly classify these barriers as organizational, individual, or interprofessional-related barriers.
Organizational barriers, such as challenges within the care environment, significantly impact the integration and sustainability of PCC in routine practice. For example, unclear implementation guidelines or protocols can create inconsistencies that affect the adoption of PCC [21] [22]. At the individual level, barriers such as lack of motivation among healthcare providers and time constraints are prominent obstacles that hinder the smooth practice of PCC [21] [22]. Lastly, interprofessional barriers involve the conflict of differing perspectives between healthcare providers regarding patient care approaches. These disagreements can create challenges in delivering effective PCC [22–24]. Within the oncology context, these barriers hinder effective communication, personalized care, and holistic support, leaving the oncology patients feeling unheard and detached [25]. These challenges compromise oncology treatment adherence, psychosocial well-being, and overall outcomes, leading to a decrease in the quality of cancer care [25, 26].
However, prior literature has well documented the pros and cons of PCC implementation. Indeed, its application in various healthcare settings and among diverse patient populations remains unclear. Regarding the oncology context, this information holds validity due to the complexity of oncology, the nature of the disease, and the patient’s stability. Patients are at a high risk of becoming recurrent emergency visitors, inpatients, and outpatients [27]; [28] [29]. Assessing PCC in oncology settings addresses the unique challenges and complexities of cancer care; it can also help reduce unnecessary hospital visits, decrease unplanned hospitalization, cost saving, and improve the continuity of care [18]. For the purpose of this research, most studies focus on evaluating PCC quantitatively and/or from a single perspective [29].
To date, very few studies have explored PCC in depth by incorporating the perspectives of both patients and healthcare providers. To fully understand the complexity and multidimensional nature of cancer care, it is essential to adopt a multiperspective approach to assessing PCC. This includes gathering insights from patients, their family members, and healthcare providers, as well as incorporating clinical observation—an approach exemplified in this research.
A multiperspective assessment, including patients, family members, healthcare providers, and clinical observations, offers a holistic understanding of care delivery. This approach bridges gaps in perception between stakeholders, allowing for a comprehensive evaluation of strengths and areas for improvement. For instance, patients and family members may highlight unmet emotional or informational needs, while healthcare providers can identify systemic or operational challenges. Clinical observations round out these perspectives by providing clear evidence for the implementation of PCC principles as they occur in real time. With all of these different points of view, the main goal of this research is to improve how the idea of PCC is used in oncology settings so that care is more specifically tailored to what matters to oncology patients. In addition, with the help of a multiperspective approach, healthcare leaders can create means and policies catered to the removal of barriers, promoting collaboration, which will help in the improvement of the overall quality of care.
Furthermore, using this way allows for comprehensive identification of gaps in current practices that may not be apparent when only one viewpoint is considered. By emphasizing the importance of multiperspective assessments, this study aims to fill this gap by providing a holistic evaluation of PCC from multiple perspectives. Moreover, the results of this study may assist healthcare leaders in identifying and addressing areas for improvement, thereby enhancing the quality of care, patient outcomes, and organizational performance.
2. Methods
2.1. Design and Objective
This study aimed to assess the implementation of PCC in oncology settings from the viewpoints of patients, family members, and healthcare providers, in addition to conducting clinical observations. We used a phenomenological qualitative approach to fully understand the lived experiences of cancer patients and their families. To do this, we used semistructured interviews [30] and clinical observations to compare the different points of view. By combining different points of view, this multimethod design ensures a full evaluation of complicated healthcare interventions. This gives us a full picture of PCC in an oncology setting.
2.2. Setting
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All healthcare providers who had been working in the center for at least 1 year;
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Patients who were previously diagnosed with cancer, admitted to the center within the preceding 2 weeks, and were able to express their feelings, experience, and participate;
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Family members of the patients who met the aforementioned criteria included those (1) who were first-degree relatives of the patient, (2) who were able to express their feelings and experiences, and (3) who accompanied the patient at intervals on at least 50% of the total days of the admission time period.
We conducted clinical observations in various inpatient units based on the patients’ journey during their stay.
2.3. Data Collection
We collected the data using two main techniques: clinical observation and semistructured open-ended interviews with patients, patients’ family members, and healthcare providers. To show how the six dimensions of PCC were used, structured clinical observation (nonparticipant observation) was conducted using a guide that had already been made [13, 27, 33].
Two nursing quality supervisors, who are experts at doing clinical quality rounds, used clinical observation to describe the PCC processes in different units using a guide that was already made based on IOM’s six dimensions. The observation findings were recorded in the field notes section of the guide, which was prepared in English. To keep the subjects from reacting too much, the clinical observations were conducted at random, which did not change the quality of the data collected or let the subjects know what part was being watched. To ensure consistency and reduce potential observer effects, the observers arrived at the setting 10 min before beginning formal data collection. During this preobservational period, their behaviors remained consistent with those during the actual observational period. We conducted the clinical observations several times during both day and night shifts. However, the observers tried to cover all steps in the patient’s journey from admission to discharge. We stopped the observation when no additional observations yielded new information.
We developed the semistructured, open-ended interview protocols based on a literature review [13, 27, 33]. Two main questions were asked of the patients and their family members: identify their expectations (how the PCC should be in an oncology setting) and experiences (how the PCC was performed in this center) according to IOM’s six dimensions of PCC. The interviews with patients and their family members were conducted within the first 2 weeks after patient discharge, while the interviews with healthcare providers were obtained according to predetermined times of availability. Similarly, we posed two primary questions to them, concentrating on the obstacles and enablers that hinder the effective execution of each PCC dimension. This study extended from January 2021 until November 2021.
As COVID-19 Pandemic Precaution Zoom application was used to conduct the recorded one-to-one interview, the interviews were conducted in the Arabic language, all patients in this study were native Arabic speakers based on where the study took place, and also that any participants who were not native speakers were at least highly fluent in Arabic. The interview duration was 30–40 min per participant. We employed various techniques to ensure the authenticity of the data, including active listening, unconditional acceptance, and clarification. The IRB waived the need for hard copy consent and approved this study with approval number 20KHCC152F. The researchers obtained verbal consent from the participants who understood the research objectives and agreed to participate voluntarily. Moreover, the authors informed the participants that the data would only be used for this research, that all data would be processed anonymously, and that they could refuse to answer questions or stop the interviews entirely whenever they wished.
2.4. Data Analysis
The recorded interviews were transcribed verbatim. The Arabic data from interviews were translated into English by the research assistant, while the English data from clinical observation were transcribed by the research team. Braun and Clarke’s six-step thematic analysis method was used in this study [34]. We used this method to ensure a comprehensive, thoughtful, and systematic description of the predefined themes [34, 35]. The six steps include becoming familiar with the collected data, creating initial codes, identifying themes, reviewing them, defining and refining them, and finally generating the report.
This study employed a hybrid thematic analysis combining both deductive and inductive approaches. As a guide, the deductive analysis was based on the themes that were already known from the IOM’s six dimensions of PCC [13, 27, 33]. The observations were written down and put into these six predefined dimensions. This made it possible to systematically interpret the data in the context of what was already known. At the same time, inductive analysis was used to find new insights or themes that came up directly from the participants’ stories. This made sure that any surprising or complex findings were recorded.
We achieved data saturation within 16 patient interviews, 15 family member interviews, and 15 healthcare provider interviews. For the clinical observation [13, 27, 33], we utilized the IOM’s six dimensions of PCC to record each observation, and because this study employs deductive thematic analysis, we integrated the clinical observations into each predetermined theme.
3. Results
3.1. Demographic Characteristics
We conducted 30 clinical observations in inpatient units. The mean duration of observations was 45 min (median: 55). We conducted forty-six semistructured interviews with 15 healthcare providers, 16 patients, and 15 family members. The mean duration of the interviews was 32 min (median: 35). Table 1 shows the demographic characteristics.
| Characteristic | Description |
|---|---|
| Patients (N) | 16 |
| Gender | 11 males/5 females |
| Mean age (range) | 50.1 years (28–64) |
| Diagnosis | 8 leukemia and lymphoma, 8 solid tumors |
| Family members (N) | 15 |
| Gender | 9 female and 6 male |
| Mean age | 43.3 years |
| Relationship to patient | 2 daughters, 2 wives, 1 mother, 1 sister, 1 son |
| Patient diagnosis | 8 leukemia and lymphoma, 7 solid tumors |
| Healthcare providers (N) | 15 healthcare providers |
| Gender | 10 female and 5 male |
| Professions | 6 nurses, 3 physicians, 3 pharmacists, 1 physiotherapist, 1 nutritionist, 1 lab technician |
3.2. Main Themes and Subthemes
Table 2 presents the major themes according to the IOM’s dimension as follows.
| # | Theme |
|---|---|
| 1 | Respecting the patients’ preferences, values, and declared needs |
| 2 | Sufficient information, effective communication, and education |
| 3 | Integration and coordination of care |
| 4 | Family and friends’ involvement |
| 5 | Physical comfort |
| 6 | Emotional support |
3.2.1. Respecting the Patients’ Preferences, Values, and Declared Needs
3.2.1.1. Patients
A 50-year-old male patient with acute myelogenous leukemia stated that “all the medical staff I have been dealing with in my admission were very cooperative and sympathetic, and all my needs were fulfilled with all pleasure. No one said no to me.”
Moreover, a 64-year-old male patient with rectal cancer expressed, “During my admission, I was impressed by the fast response to my requests, I like the way the staff was dealing with us.”
Two patients provided feedback on the key system operations that are important to fulfill their needs, such as scheduling appointments and pharmacy service, suggesting that improvement in speed could better meet their needs and minimize the waiting time. One patient expressed that the system had not fully fulfilled aspects of their preferences, values, and needs.
3.2.1.2. Family
Son of a patient with pancreatic carcinoma stated “Respecting patients’ preferences could be achieved by treating each patient as a unique case, rather than using a one-size-fits-all approach. Additionally, I recommend hiring more staff throughout all the center’s departments to enable them to provide excellent care and service for each patient.”
Daughter of lymphoma patient expressed “in general, there is patient respect, regarding patient’s preference it was not fully full filled. Additionally, my mother experienced significant side effects from one of her medications, and no alternatives were explored. However, RNs were amazing and responded to my mother’s request rapidly.”
Furthermore, one family member proposed that active listening to the patient’s voice could lead to excellence in this domain. Interestingly, another family member felt that trust in the physician’s decisions makes patient engagement unnecessary, whereas it is worth mentioning that three family members expressed the need for further improvements in this area to fully meet their needs.
3.2.1.3. Clinical Observations
A total of 30 clinical observations suggested opportunities for improvement in the implementation of PCC. For example, in just four observations, nurses took slightly longer than usual to respond to patients’ room calls. In eight observations, physicians could have improved their engagement with patients in the decision-making process after examinations. There were also a few instances where English words were used in medication-related education sessions for native Arabic speakers, indicating areas for improvement in ensuring effective communication. In some cases, it was observed that more interaction time could be allocated with patients’ family members during daily rounds (observed in 10 instances). Additionally, in two observations, nurses missed asking patients about their preferred location for the insertion of a new cannula. These observations provide valuable insights for further enhancing the implementation of PCC.
3.2.1.4. Frontline Healthcare Providers
The frontline healthcare providers indicated many facilitators for the implementation of this dimension. These facilitators include proper training and education regarding this dimension; clear policies and job descriptions describing this dimension; the availability of standardized guidelines for treatment and satisfying the patient’s needs; and conducting an interdisciplinary team decision based on the patient’s assessment. Furthermore, conducting satisfaction surveys, spending more time interacting with patients, raising awareness of PCC concepts among both patients and healthcare providers, establishing open channels, and fostering effective communication are all crucial factors in facilitating this dimension.
However, they did find a lot of problems with putting this dimension into action. These problems include too much work, patients who are in critical condition, patients who will not cooperate, patients with low education, patients with different needs, and too many patients whose needs are not met, patients who have problems with their insurance, and patients who did not always agree on the best treatment option from a medical point of view. For example,
“We genuinely prioritize and respect the diversity of our patients’ preferences, always mindful of their unique needs. While we base treatment decisions on a strong foundation of medical expertise, there are times when, in our unwavering commitment to ensuring the best possible medical outcomes, we unintentionally find that a patient’s choice may not perfectly align with the optimal medical path. This reflects our dedication to providing personalized care that respects the individuality of each patient while striving for the best possible health outcomes.”
“The well-being and conditions of our patients are our top priorities. Consider, for example, individuals dealing with advanced cancer who may require curative treatments but, unfortunately, may not have full support available. We are unwavering in our commitment to exploring every possible avenue to offer the best care and support to these patients, continuously seeking innovative solutions to improve their overall health and well-being.”
3.2.2. Sufficient Information, Effective Communication, and Education
3.2.2.1. Patients
“A 57-year-old patient with thyroid cancer emphasized the importance of patients being well-informed about their disease, treatment plan, blood test results, and other related aspects. They expressed that patients have the right to know everything about their situation and should be actively involved in all aspects of their treatment plan.”
A 28 years old male diagnosed with AML expressed “There is always a way to communicate with my doctor whenever needed, he explained to me everything related to my case in a very clear way.”
3.2.2.2. Family Members
“From my personal point of view, it’s not always a good thing because sometimes the patient’s psychological well-being can be affected by the information they receive.”
The son of 50 years old patient diagnosed with endometrial cancer said “always there is a chance for enhancing the communication with physician’s right after their clinical rounds. Although, sometimes the information given wasn’t always clear or comprehend, but it was easy to get touch with the clinical coordinator for more information and assistance.”
Moreover, most of them were satisfied with the first part of this dimension, information sufficiency. However, due to the limited and short time physicians have during rounds, they suggest finding a direct channel for contact with the primary physician to obtain more details about their patients’ status.
3.2.2.3. Clinical Observations
The clinical observations highlighted a positive aspect of our healthcare providers’ interactions, involving concise but frequent communication with both patients and their family members (four observations). Furthermore, it is evident that healthcare providers are committed to continuous improvement. They recognize the importance of enhancing their strategy to further validate patients’ and family members’ understanding of educational topics, with this practice being notably emphasized (six observations). This commitment to refining the approach ensures that healthcare providers provide the highest level of clarity, support, and care to everyone involved in the healthcare journey.
3.2.2.4. Frontline Healthcare Providers
A physician stated, “The policy on patient and family education, as well as patient rights, is clear and guides us in satisfying their needs.”
A nurse stated, “The availability of courses and training for health and family education supports our efforts to satisfy this dimension.”
These facilitators include availability of policy for patient and family education and patient right, availability of courses and training for health and family education, availability of educational material, translator for the nonarabic speakers’ patients, along with an availability of electronic medical records as enablers to view medications, lab results, and appointments which support education to the patients as per their needs.
A nurse stated, “The availability of courses and training for health and family education supports our efforts to satisfy this dimension. Additionally, increasing awareness of technology usage among patients, especially among older adults, will enhance this aspect.”
3.2.3. Integration and Coordination of Care
3.2.3.1. Patients
A 43-year-old leukemia patient expressed her preference, indicated, “I like the idea of daily rounds by physicians and pharmacists; I believe it could enhance the cooperation in care.”
Male patient diagnosed with Myeloid Sarcoma aged 47 years said “Very cooperative staff with a high level of patience and flexible. All parts of KHCC were dealing together to achieve the center’s goals in the end.”
Despite the partial implementation of coordination, two patients highlighted the potential for enhanced coordination among healthcare providers. In contrast, one patient believed that there was a substantial need for improvement in the coordination system, noting a current lack of coordination between different departments. This input is invaluable as it encourages continuous improvement toward excellence.
3.2.3.2. Family Members
A family member of a lung cancer patient stated, “In healthcare, it’s essential for the medical staff to document every detail so that the next healthcare provider can access it, which is vital for better coordination. I also prefer having one physician per patient to avoid switching between doctors.”
Whereas an AML patient added “There was comprehensive cooperation between the staff including physicians and nurses.”
A male 64 years old with bladder cancer said “Very cooperative staff with a high level of patience and indulgence. All parts of KHCC were dealing together to achieve the center’s goals in the end.”
In a spirit of constructive feedback, five family members pointed out that, while the implementation was generally positive, there were areas for further enhancements. Among the departments, they observed varying degrees of implementation, particularly in the appointment process, which, despite its good quality, could still benefit from improvements to achieve a higher level of efficiency. Additionally, they identified the emergency room as a busy area, recognizing the need for additional resources to effectively accommodate patients and their families. One family member offered a valuable suggestion: minimize the switch between physicians for the same patients, thus streamlining their care journey.
3.2.3.3. The Clinical Observations
The clinical observations demonstrated the proper conduct of all handovers and patient transfers, with no negative findings.
3.2.3.4. Frontline Healthcare Providers
Frontline healthcare providers identified several facilitators for implementing this dimension, such as supportive managers and teams, effective teamwork coordination and organization, and clear policies.
However, they also mentioned specific barriers, including disorganized referrals and appointment processes.
3.2.4. Family and Friends’ Involvement
3.2.4.1. Patients
A male patient diagnosed with AML aged 28 years said, “It will be better if only the first-degree relative engages in the decision-making; also, the patient’s preferences are crucial in determining the involvement or not. Regarding my experience, my brother was involved, and I was comfortable with that.”
3.2.4.2. Family Members
Female companion-wife of patient with laryngeal cancer: “He preferred to stay alone since the RNs were very cooperative and no need for the presence of family members.”
3.2.4.3. Clinical Observations
The clinical observations revealed a high level of family involvement in the treatment plans and rounds, demonstrating the family’s active role in the care process. This participation was notably observed twice, displaying a deep sense of collaboration and support in the patient’s journey to recovery. Furthermore, dedicated nurses and pharmacists skillfully and carefully carried out family education, demonstrating a clear commitment to patient and family well-being. This educational aspect was observed twice, highlighting the healthcare team’s dedication to ensuring that the family was well informed and empowered as partners in the patient’s care.
3.2.4.4. Frontline Healthcare Providers
A laboratory technician suggested conducting qualitative studies and interviews with the patient’s family members to assess their preferences
“A nurse stated, The absence of family members or uncooperative and/or poorly educated family members negatively impacts the patient.”
3.2.5. Physical Comfort
3.2.5.1. Patients
“A 64-year-old male patient with bladder cancer stated, It’s very important for the patient to experience physical relief.”
Male patient diagnosed with rectal cancer aged 64 years: “I was physically comfortable, even upon moving out to another floor using the bed itself or the wheelchair.”
Only one patient addressed that this domain is not fully fulfilled.
3.2.5.2. Family Members
“The mother of a patient with sarcoma suggested ‘providing beds in each waiting room, before clinic appointments, chemotherapy, or even before entering the emergency department to reduce waiting times’. She also recommended ‘having additional rooms with beds for chemotherapy or chairs that can be converted into bed’.”
“While not yet fully applied throughout the center, there’s a dedicated focus on improving it. Particularly, the ER rooms have been identified as a priority area for enhancements. There is a need for more comfortable seating and beds, as well as addressing the challenge of high patient volume. The waiting times are being actively addressed to ensure they do not impact patient well-being.”
3.2.5.3. Clinical Observations
The clinical observations showed that all findings related to physical comfort were positive.
3.2.5.4. Frontline Healthcare Providers
“A pharmacist suggested ‘making the departments closer to each other in physical space and reducing the number of steps that patients need to take during their visit, in addition to considering the use of virtual clinics’.”
In contrast, frontline healthcare providers indicated barriers to implementing this dimension, including the complexity and advancement of cancer for some patients, which required unique resources.
3.2.6. Emotional Support
3.2.6.1. Patients
“A 41-year-old patient with lymphoma stated, ‘I received emotional and psychological support from all staff, not only psychosocial workers, which is great. I built good relations with the nurses, so I entered my surgery in a good mood because of that’.”
“A 50-year-old patient with leukemia stated, ‘I prefer daily rounds by mental health providers. It’s better when the physician tells you the truth rather than hiding it to maintain my psychological health’.”
Additionally, one patient highlighted the importance of providing extra emotional support, particularly for young patients. Conversely, just one patient mentioned that they did not receive emotional support during their admission.
3.2.6.2. Family Members
Many of the interviewed family members had a positive experience and high expectations regarding emotional support in oncology settings. Two family members found it more important than physical aspects. Thirteen family members indicated that it was satisfactorily implemented in the center. Two family members provided constructive feedback, stating that it was only partially implemented. They emphasized that addressing long waiting times would significantly reduce emotional distress.
3.2.6.3. Clinical Observations
The clinical observations showed that all findings related to emotional support were positive.
3.2.6.4. Frontline Healthcare Providers
Frontline healthcare providers indicated several facilitators for implementing this dimension, including training courses, clear policies, teamwork, and the presence of palliative and pain management clinics. On the opposite side, they also indicated several barriers to implementation, such as a high number of complicated patients with advanced cancer, the need for more experts in providing emotional support for such patients, varying patient mindsets and cultures where some patients refuse emotional support, and gender-sensitive issues, such as some females refusing support from male staff.
4. Discussion
Regardless of the fact that the PCC is earning more attention and recognizing its importance to oncology patients, little is known about their specific experiences and preferences. The results of this study showed how important it is to respect the preferences, values, and stated needs of cancer patients and their families. Most of the people interviewed said that this area is well handled during treatment, which is in line with previous research [13, 36, 37]. Additionally, this study underscored the significance of this domain, as it enhances the treatment journey by offering a wider range of treatment options and meeting patients’ needs, thereby positively impacting patient satisfaction, treatment outcomes, and adherence to therapeutic regimens [38, 39].
Regarding the decision-making process, this study result showed that some patients opt to delegate it to their family members and physicians. The influence of culture on shared decision-making, where elder family members play a crucial role, could also explain this [40]. Patients who rely on physician decisions may justify their trust in physicians due to their high levels of capability and experience in selecting the most suitable treatment options; previous literature [41, 42] clearly highlights this one-way care.
Interestingly, the patient and their families expressed a preference for full immersion in the shared decision-making process during the assessment. Tamirisa et al. [44] conducted a study that found oncology patients require full involvement in the decision-making process while also expecting physicians to provide evidence-based recommendations. On the other hand, the findings of this study contradict the findings of a study that investigated the cultural challenges of shared decision-making among Arabic speakers with chronic disease [43]. This study revealed that one in four patients preferred to be involved in decision-making processes. Cultural diversity between countries and the type of the patient’s chronic disease could potentially explain this phenomenon.
Furthermore, this study demonstrated the correct implementation of the majority of clinical observations in this domain. This indicates that healthcare providers are making efforts to tailor their care to individual patients, recognizing the importance of this dimension in individualizing the treatment, which aligns with the core principles of PCC. The needs of oncology patients surpass those of other patients, and the Islamic culture itself fosters empathy and the fulfillment of the patient’s needs [40, 45]. Tringale et al. [46] conducted a systematic review, revealing that healthcare providers incorporate patient values and preferences in healthcare through a variety of approaches.
Nonetheless, some findings concerning responsiveness to patients’ room calls, language barriers, and inadequate engagement of family members were some findings that should be addressed, given that the barriers perceived by healthcare providers, such as patients’ education level and preferences, are not always in the same direction as the medical-wise perspectives for the best treatment option and best outcomes. These findings were in line with previous studies [47–51]. Additionally, literature showed the importance of the availability of a wide range of services to meet oncology patients’ preferences, including technology and resources, in enhancing PCC [48, 49]. According to Harris’s dissertation, active listening to patients and their families is crucial for enhancing the quality of PCC [52].
This study holds in its fold many facilitators of implementing respecting patients’ preferences, values, and needs, which are in line with the study findings conducted by Moore et al. [53] who revealed that the facilitators were organizational factors such as leadership style and training, clarity of policy, and an empowering attitude and approach from the professionals. We summarized the barriers as the need for more staffing, the heterogeneity of cancer patients, and the diversity of patient educational levels. These barriers are common in oncology settings, as oncology patients have higher service demands and require one-on-one care [54].
Both patients and family members agreed that they had a positive experience with the cancer treatment journey in the domains of sufficient information, effective communication, and education. This dimension is crucial in oncology settings as it significantly supports the process of informed decision-making, allowing patients to actively participate in shaping their treatment plans, which is paramount in complex oncology cases. This proactive approach to patient care, in turn, yields greater patient satisfaction, ultimately fostering increased continuity of care. The cumulative effect of this approach results in an overall excellent patient experience throughout their treatment journey. Importantly, this study’s findings align seamlessly with recent literature, reinforcing the significance of these principles in modern healthcare practices [49, 51, 55, 56]. Modern teaching methods and strong psychological services work together to help patients and their families understand everything they need to know. This leads to better PCC, which makes the patient experience better [18, 48, 50, 57].
Regarding the integration and coordination of care, the results show a positive experience among patients and their family members, as well as in clinical observations. This indicates that it is properly implemented in the oncology setting, with positive effects on various aspects of patient care, such as patient satisfaction, quality of care, and the overall patient experience [58]. Patients and their families highly valued the teamwork approach in the oncology center, which positively impacted the treatment plan. Interdisciplinary rounds also helped improve communication between healthcare providers, patients, and their family members. These factors had the most significant impact on the total patient experience, including service and waiting times and the treatment environment, which aligns with findings from previous studies [59–61]. On the other hand, despite the positive patient experiences in the past, there is still room for improvement in the appointment process. It needs to be significantly easier for patients and their families, as this will enhance their satisfaction and reduce their suffering. This study’s clinical observations align with previous studies [62, 63], demonstrating the proper conduct of all handoffs and patient transfers, with no negative findings.
Many reasons could be explained, such as a supportive manager and supportive team, teamwork coordination and organization, and clear structure and policy as perceived by the healthcare providers.
In regard to physical comfort and emotional support, it is obvious that patients and their family members who participated in this study had positive experiences during their cancer journey. These findings align with previous studies [64, 65]. Moreover, some patients and family members perceived that the workload and burden have a negative impact on the effective implementation of physical comfort and emotional support domains. The staff shortage and the high number of advanced cancer patients seeking advanced care may contribute to this issue. Furthermore, financial toxicity, limited resources, and waiting times at each step of the treatment process are considered as major barriers to the implementation of this dimension [65, 66].
The practical implications of this study underscored the significance of PCC in oncology settings. This was achieved by enhancing patient and family involvement, tailoring shared decision-making models, addressing barriers to PCC in oncology settings, addressing financial toxicity, and adopting modern technology to enhance PCC. The practical implications of this study underscored the significance of PCC in oncology settings. This was achieved by enhancing patient and family involvement, tailoring shared decision-making models, addressing barriers to PCC in oncology settings, addressing financial toxicity, and adopting modern technology to enhance PCC. Improving these aspects will result in better outcomes and more comprehensive PCC experience.
5. Limitation
Despite the study’s comprehensive insights into PCC in oncology settings, it has limitations. The reliance on patient and family member self-reports could introduce bias, as these perspectives might not fully capture the complexities observed by healthcare providers. Although the study considered multiple perspectives, the interplay between these perspectives was not fully explored, which may leave gaps in comprehending the collaborative aspects of PCC. Furthermore, the study did not thoroughly explore the role of technologies like digital health and AI in facilitating shared decision-making or coordination. To explore these limitations and validate the findings across diverse oncology settings, further research is necessary.
6. Conclusion
This study sheds light on the critical balance between positive patient experiences and the challenges encountered in delivering high-quality PCC in oncology settings. The study’s pioneering nature in qualitatively assessing PCC from multiple perspectives, including patients, their family members, healthcare providers, and clinical observations, provides valuable insights. The findings indicate that respecting patients’ preferences, values, and declared needs is paramount in ensuring positive experiences. While some patients delegate decision-making to their family members and physicians, most prefer active involvement in this process, emphasizing the need for shared decision-making in oncology care as it enhances satisfaction among the patients and their family members.
Clinical observations highlight the importance of customizing care for individual patients, while addressing challenges such as language barriers and family engagement is crucial. The results also show what helps and hinders implementing patients’ wishes, with a focus on organizational factors and the complexity of oncology care. By providing sufficient information and education, the positive patient experience supports informed decision-making and ultimately enhances PCC. Lastly, integration and coordination of care positively affect various aspects of patient care, although improvements in appointment processes are needed. Overall, the study supports PCC principles, which is in line with previous research. It also highlights the importance of modern teaching methods and psychological services in making the oncology patient experience better.
Conflicts of Interest
The authors declare no conflicts of interest.
Funding
This work was supported by grants from the Intramural Research Grants Program, King Hussein Cancer Center, Amman, Jordan. (Grant no. 20 KHCC 152 F)
Acknowledgments
We are grateful to the Science Health Education (SHE) Center and Dana-Farber Cancer Institute for their guidance in editing and reviewing this manuscript. Special thank you to Editor, Elizabeth Hamlin, for her contribution to the finalization of this manuscript.
Open Research
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
