Background
Methods
Q methodology
Development of the research instrument
Dimension | Description |
---|---|
1) Respect for patients’ values, preferences, and expressed needs | Patients have indicated that they feel the need to be treated with dignity and respect and to be seen as whole persons, not merely as a disease or functional impairment [12,13]. Whole-person care is a concept requiring professionals’ understanding of each patient as a whole by taking the time to really get to know the patient and his/her values and preferences, thereby improving the patient’s quality of life [15,16,18,19]. To enhance PCC, healthcare professionals should involve patients in decisions about their care and support them in setting and achieving their own treatment goals [12,13]. |
2) Information and education provision | Patients expressed the fear that information would be withheld from them [12,13]. The provision of complete information to patients about all aspects of their care is thus necessary. Patients should have access to their care records and be in charge of their care. Open communication between patients and healthcare professionals, which requires professionals to possess high-quality communication skills, is also necessary [18,19]. |
3) Access to care | Access to care involves patients’ ability to make appointments promptly and easily, the availability of healthcare professionals, support and navigation for illiterate patients, and consideration of cultural differences [18]. Hospitals must be accessible to all patients, (including those with mobility issues), post clear directions in several languages, and have a clear, user-friendly scheduling system in place [12,13]. |
4) Emotional support to relieve fear and anxiety | |
5) Involvement of family and friends | Depending on the seriousness of the condition, an illness can affect not only the patient, but also his/her family and friends. One example is the lengthy hospitalisation of a child. In such cases, PCC may be improved by the availability of accommodations for relatives near the hospital, the involvement of relatives in decisions about the patient’s care, and attention to the role and needs of informal caregivers [12,13]. |
6) Continuity and secure transition between healthcare settings | Especially in the hospital setting, continuity and secure transition between healthcare settings have been identified as important aspects of PCC [12,13]. These concerns refer to in-hospital transfers (e.g. from the intensive care unit to other departments), but also to transitions to rehabilitation centres, nursing homes, and long-term care facilities. Smooth transitions require the transfer of all relevant patient information; ensuring that patients are well informed about where they are going, what care they will receive, and who their contact person will be; and the provision of skilled advice about care and support at home after hospital discharge. |
7) Physical comfort | Patients’ physical comfort should be supported effectively. Care areas should be clean and comfortable, patients' privacy must be respected, pain should be effectively managed, and healthcare professionals should take patients' preferences about support and their daily living needs into account [12,13,16]. |
8) Coordination of care | Patient care should be well coordinated among professionals (teamwork in care delivery). Healthcare professionals should be well informed so that patients need to tell their stories only once; patients should have a primary contact person who knows everything about their condition and treatment [12,13,18,19]. |
Dimension | Examples | Statements |
---|---|---|
Patients’ preferences | - Providing care in a respectful atmosphere with dignity and respect | 1. Healthcare professionals treat patients with dignity and respect. |
- Focus on quality of life issues / whole-person care | 2. Healthcare is focused on improving patients’ quality of life. | |
3. Healthcare professionals take patients’ preferences into account. | ||
- Informed and shared decision making / patient participation and involvement | 4. Healthcare professionals involve patients in decisions about their care. | |
- Personal goals and outcomes | 5. Patients are supported in setting and achieving their own treatment goals. | |
Physical comfort | - Pain management | 6. Healthcare professionals pay attention to pain management. |
- Assistance with daily living needs | 7. Healthcare professionals take patients’ preferences for support and daily living needs into account. | |
- Hospital surroundings and environment | 8. Patient areas in hospital are clean and comfortable. | |
9. Patients have privacy in the hospital. | ||
Coordination of care | - Coordination and integration of care | 10. Healthcare professionals are well informed; patients need to tell their story only once. |
11. Patient care is well coordinated among professionals. | ||
- Spokesperson for navigation through the system | 12. Patients know who is coordinating their care. | |
13. Patients have a primary contact who knows everything about their condition and treatment. | ||
- Teamwork | 14. Healthcare professionals work as a team in care delivery to patients. | |
Emotional support | - Anxiety about consequences of the changed situation | 15. Healthcare professionals pay attention to patients’ anxiety about their situations. |
- Creating support systems | 16. Healthcare professionals involve relatives in emotional support of the patient. | |
- Anxiety about the impact of one’s illness on one’s family and loved ones | 17. Healthcare professionals pay attention to patients’ anxiety about the impact of their illness on their loved ones. | |
Access to care | - Access to location / specialist | 18. The hospital is accessible for all patients. |
- Availability of transportation | 19. Clear directions are provided to and inside the hospital. | |
- Clear instructions provided on how and when to get referral | ||
- Ease of scheduling appointments | 20. Appointment scheduling is easy. | |
- Waiting time | 21. Waiting times for appointments are acceptable. | |
- Language barrier | 22. Language is not a barrier for access to care. | |
- Cultural differences | ||
Continuity and transition | - Understandable, detailed information regarding all aspects of care | 23. When a patient is transferred to another ward, relevant patient information is also transferred. |
- Coordination and planning of ongoing treatment | 24. Patients who are transferred are well informed about where they are going, what care they will receive, and who their contact person will be. | |
- Provide information regarding access to support after hospital discharge | 25. Patients receive skilled advice about care and support at home after hospital discharge. | |
Information and education | - Information on all aspects of care (e.g. clinical status, progress, prognosis, care processes) | 26. Patients are well informed about all aspects of their care. |
- Information on processes of care | 27. Patients can access their care records. | |
- Information and education to facilitate autonomy and self-care | 28. Patients are in charge of their own care. | |
29. Healthcare professionals support patients to be in charge of their care. | ||
- Open communication between patient and caregiver | 30. Open communication between patients and healthcare professionals occurs. | |
- Skills and knowledge of caregiver | 31. Healthcare professionals have good communication skills. | |
Family and friends | - Accommodation | 32. Accommodations for relatives are provided in or near the hospital. |
- Respect for role in decision making | 33. Healthcare professionals involve relatives in decisions about the patient’s care. | |
- Support for family as caregivers | 34. Healthcare professionals pay attention to loved ones in their role as the patient’s caregivers. | |
- Recognition of the needs of family and friends | 35. Healthcare professionals pay attention to the needs of the patient’s family and friends. |
Domain | Statement | View on PCC | ||||
---|---|---|---|---|---|---|
1 | 2 | 3 | 4 | |||
Patient’s preferences | 1 | Healthcare professionals treat patients with dignity and respect. | +4 | +3 | +2 | +4 |
2 | Healthcare is focused on improving the quality of life of patients. | +3 | +3 | 0 | +1 | |
3 | Healthcare professionals take into account patient preferences. | 0 | +1 | +2 | 0 | |
4 | Healthcare professionals involve patients in decisions regarding their care. | +4 | +3 | +3 | −1** | |
5 | Patients are supported to set and achieve their own treatment goals. | −1** | +4** | +1** | −4** | |
Physical comfort | 6 | Healthcare professionals pay attention to pain management. | +2 | +2 | −2** | 0 |
7 | Healthcare professionals take patient preferences for support with their daily living needs into account. | −2 | +1** | −1 | −2 | |
8 | Patient areas in hospital are clean and comfortable. | −2 | −1 | +4 | +3 | |
9 | Patients in hospital have privacy. | +1 | −1 | −1 | 0 | |
Coordination of care | 10 | Healthcare professionals are well-informed; patients need to tell their story only once. | 0* | −1* | +2* | −3* |
11 | Patient care is well-coordinated between professionals. | +1 | 0 | 0 | −1 | |
12 | Patients know who is coordinating their care. | −1 | 0** | −2 | −3 | |
13 | Patients have a first point of contact who knows everything about their condition and treatment. | +2** | 0 | −1 | +4** | |
14 | Healthcare professionals work as a team in care delivery to patients. | +1 | 0 | +3** | +2 | |
Emotional support | 15 | Healthcare professionals pay attention to patients' anxiety about their situation. | +1 | +1 | −1** | +2 |
16 | Healthcare professionals involve relatives in the emotional support of the patient. | −4 | −2 | 0 | 0 | |
17 | Healthcare professionals pay attention to patients' anxiety over the impact of their illness on their loved ones. | −2 | 0 | +1 | −1 | |
Access to care | 18 | The hospital is accessible for all patients. | +2* | −3** | 0 | 0 |
19 | Clear directions are provided to and inside the hospital. | −3 | −3 | −4 | −1 | |
20 | It is easy to schedule an appointment. | 0** | −4 | −2 | −3 | |
21 | Waiting times for an appointment are acceptable. | 0** | −4* | −3 | −2 | |
22 | Language is not a barrier for access to care. | 0 | −2* | 0 | −1 | |
Continuity and transition | 23 | When a patient is transferred to another ward, relevant patient information is transferred as well. | +2 | +1 | −1 | −2 |
24 | Patients who are transferred are well-informed about where they are going, what care they will receive and who will be their contact person. | 0 | −1 | 0 | 0 | |
25 | Patients get skilled advice about care and support at home after hospital discharge. | 0 | +1 | 0 | +2* | |
Information and education | 26 | Patients are well-informed about all aspects of their care. | +3 | +2 | +1 | +3 |
27 | Patients can access their care records. | −4 | 0** | −2 | −4 | |
28 | Patients are in charge of their own care. | −1** | +4 | +4 | 1** | |
29 | Healthcare professionals support patients to be in charge of their care. | −1* | +2 | +1 | 0 | |
30 | There is open communication between patient and healthcare professionals. | +3 | 0** | +3 | +3 | |
31 | Healthcare professionals have good communication skills. | +1 | +2 | +2 | +1 | |
Family and friends | 32 | Accommodation for relatives is provided in or nearby the hospital. | −3 | −3 | −4** | +1** |
33 | Healthcare professionals involve relatives in decisions regarding the patient's care. | −2 | −2 | +1 | +2 | |
34 | Healthcare professionals pay attention to loved ones in their role as carer for the patient. | −1 | −1 | −3* | +1** | |
35 | Healthcare professionals pay attention to the needs of family and friends of the patient. | −3 | −2 | −3 | −2 |