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There is an increasing amount of research that investigates the needs and wishes of people with aphasia and their relatives with regards to improving the accessibility of communication with healthcare professionals (HCP). An important way to improve this is by training HCP to use supportive conversation techniques and tools. This study aimed to inform the development of such a training, by adding to previous findings in the literature regarding the experiences, needs and wishes of people with aphasia and their relatives. We were interested in their experiences with the accessibility of communication and support from HCP and how they believed this can be improved. An exploratory qualitative research design was chosen. Data was collected through qualitative semi-structured interviews with 20 people with aphasia and 12 relatives. The time post stroke ranged from 3 months to 41 years. Four themes described the data. According to people with aphasia and relatives (1) information transfer in healthcare settings and (2) the use of supported conversation techniques by HCP are inadequate, (3) there is a lack of shared decision-making in healthcare settings, and (4) support, guidance, counseling and education is mainly targeted at the person with aphasia. People with aphasia and relatives reported a variety of positive and negative experiences in all themes. Even though guidelines and interventions have been developed to improve healthcare for people with aphasia and their relatives, we found that people still encounter substantial challenges in access to- and provision of information, shared decision-making, support and communication with HCP. The findings in this study provide some important recommendations for improvement, including the improvement of transfer of information, shared decision-making and individual support for the relatives. [ABSTRACT FROM AUTHOR]

Background: The post-COVID syndrome (PCS) has a large impact on an individual's daily life. The wide variety of symptoms in PCS patients and the fact that it is still relatively new makes it difficult for general practitioners (GPs) to recognize, diagnose and treat patients with PCS, leading to difficulties in assessing and fulfilling healthcare needs. It is largely unknown what the experiences of Dutch patients and GPs are with PCS and, therefore, we gained insight into the different aspects of living with PCS and the associated healthcare needs., Methods: Semi-structured interviews were performed with 13 self-reported PCS patients (varying in sex, age, education, and health literacy) and 6 GPs (varying in gender, age, and type of practice) between January-July 2022. Patients and GPs were most likely unrelated (not in the same practices). The data have been analysed using the Thematic Analysis method., Results: Experiences appeared to vary between two types of PCS patients that emerged during the interviews: (1) individuals with good pre-existing health status (PEHS) who are severely affected by PCS and have difficulty recovering and (2) individuals with poorer PEHS whose health became even poorer after COVID-19 infection. The interviews with PCS patients and GPs revealed two main themes, in which the types of patients differed: (1) aspects of living with PCS; individuals with good PEHS mainly experience symptoms when overstimulated, while individuals with poorer PEHS generally feel exhausted continuously. (2) Healthcare experiences; GPs emphasized that individuals with good PEHS seem to benefit from support in distributing their energy by careful planning of daily activities, whereas individuals with poorer PEHS require support in activation. Patients and GPs emphasised the importance of taking patients seriously and acknowledging their symptoms. Finally, the patients interviewed indicated that some GPs doubted the existence of PCS, resulting in insufficient recognition., Conclusion: Awareness of the differences in needs and experiences of the two types of PCS patients could contribute to more appropriate care. Acknowledgement of PCS by GPs as a real syndrome is important for patients and plays an important role in coping with or recovering from PCS. A multidisciplinary person-centred approach is important and can be coordinated by a GP., (© 2024. The Author(s).)

Purpose: To describe the experiences of patients with nursing care they had received when hospitalized for mania. Design and Methods: Multicenter qualitative study using open interviews. Data were analyzed using the Stevick‐Colaizzi‐Keen method. Findings: Sense of security is vital for the recovery of these patients, nurses can support and hinder this. Feelings of security are related to clear and calm communication, respect, recognizability of nurses, and daily structure. Practice Implications: Nurses should make sure that the patient recognizes them as nurses. Nurses should spend as much time as possible in the living room. Clear communication about treatment goals is important. [ABSTRACT FROM AUTHOR]

Aim To gain insight into the quantity and quality of spiritual care provided by nurses in curative cancer care, from the perspectives of both patients and nurses. Background Cancer causes patients to suffer from diverse symptoms related to their illness. Nurses play an important role in the care for people with cancer. Next to paying attention to physical and psychosocial needs, caring for spiritual needs of patients also belongs to good nursing. Most of the research concerning spirituality and spiritual care in relation to cancer has focused on palliative care. Design A mixed methods design will be used in two sub-phases. First, we will conduct semi-structured interviews with 72-90 patients coming from nine hospitals. Subsequently, approximately the same number of nurses working on oncology wards of these hospitals will be interviewed. Methods We meticulously composed both interview guides so that only near the end of the interview explicit terms like spirituality and spiritual care are explicitly mentioned. Until that point, we will use other words to define the concepts. Next to the interviews, demographics, answers to some statements and several questionnaires will be gathered. Content analysis supported by DEDOOSE will be used to answer the research questions. Discussion The insight we will gain in this study enables us to compare experiences from the perspective of both patients and nurses. This can also provide us with suggestions for the improvement of nursing care for people with cancer who are treated with curative intent, a topic until now hardly addressed. [ABSTRACT FROM AUTHOR]

Introduction: Responding to patients' needs and preferences is important in the delivery of outpatient care. Recent and systematically collected data reflecting human immunodeficiency virus (HIV)-infected patients' opinions on how their outpatient care should be delivered are lacking. Our aim was to identify aspects of care that people with HIV in outpatient care in The Netherlands consider important and to evaluate the extent to which the received care meets their expectations. Methods: We measured patient preferences and experiences in a nationwide sample of HIV-infected patients using a modified, previously validated questionnaire (QUOTE-HIV). Results: The aspects of care that were considered most important were specific expertise of the care provider in HIV medicine, the care provider taking the patient seriously and receiving adequate information about treatment options. In addition, confidentiality of HIV status at the outpatient clinic was a major concern. Patient experiences were positive, with the majority of the respondents indicating that they always or usually received care in accordance with their preferences. Conclusion: HIV-infected patients greatly value having care providers with HIV-specific expertise. Safeguarding the privacy of HIV status and the provision of information about treatment options are matters that deserve continuous attention in the delivery of outpatient HIV care. [ABSTRACT FROM AUTHOR]

Background: Patient‐centred care has received considerable attention in the last few decades, but the patients’ perspective remains underexposed. This study reports on an in‐depth evaluation of patients’ experiences and preferences at an otorhinolaryngology outpatient department. Methods: Qualitative research was conducted on patients’ experiences and preferences at an otorhinolaryngology outpatient department in an academic hospital. The study comprised two phases. First, semi‐structured interviews were held with 22 patients. Second, results from the interviews were verified and deepened in a focus group (N = 7). Results: Overall, experience with patient‐centred care was positive at the outpatient department. Three of the six dimensions of patient‐centred care predominated in the interviews and the focus group: information, communication and education; coordination and integration of care; and respect for patients’ values, preferences and expressed needs. The negative experiences were mostly in these dimensions. The dimensions physical comfort and involvement of family and friends were of lesser significance. Opinion on emotional support – relieving fear and anxiety differed as to whether this was the responsibility of the doctor or the patient. Conclusion: Qualitative research provided a deeper understanding of patients’ experiences and preferences at an otorhinolaryngology outpatient department. Such an in‐depth evaluation can be useful in the transition towards patient‐centred care. [ABSTRACT FROM AUTHOR]

Background Assessing quality of care from the patient's perspective has changed from patient satisfaction to the more general term patient experience, as satisfaction measures turned out to be less discriminative due to high scores. Literature describes four to ten dimensions of patient experience, tailored to specific conditions or types of care. Given the administrative burden on patients, less dimensions and items could increase feasibility. Ten dimensions of patient experiences with physical therapy (PT) were proposed in the Netherlands in a consensus-based process with patients, physical therapists, health insurers, and policy makers. The aim of this paper is to detect the number of dimensions from data of a field study using factor analysis at item level. Methods A web-based survey yielded data of 2,221 patients from 52 PT practices on 41 items. Principal component factor analysis at item level was used to assess the proposed distinction between the ten dimensions. Results Factor analysis revealed two dimensions: 'personal interaction' and 'practice organisation'. The dimension 'patient reported outcome' was artificially established. The three dimensions 'personal interaction' (14 items) (medianpractice level = 91.1;IQR = 2.4), 'practice organisation' (9 items) (medianpractice level = 88.9;IQR = 6.0) and 'outcome' (3 items) (medianpractice level = 80.6;IQR = 19.5) reduced the number of dimensions from ten to three and the number of items by more than a third. Conclusions Factor analysis revealed three dimensions and achieved an item reduction of more than a third. It is a relevant step in the development process of a quality measurement tool to reduce respondent burden, increase clarity, and promote feasibility. [ABSTRACT FROM AUTHOR]

Background Accounting for the patients' perspective on quality of care has become increasingly important in the development of Evidence Based Medicine as well as in governmental policies. In the Netherlands the Consumer Quality (CQ) Index has been developed to measure the quality of care from the patients' perspective in different healthcare sectors in a standardized manner. Although the scientific accountability of anthroposophic healthcare as a form of integrative medicine is growing, patient experiences with anthroposophic healthcare have not been measured systematically. In addition, the specific anthroposophic aspects are not measured by means of existing CQ Indexes. To enable accountability of quality of the anthroposophic healthcare from the patients' perspective the aim of this study is the construction and validation of a CQ Index for anthroposophic healthcare. Method Construction in three phases: Phase 1. Determining anthroposophic quality aspects: literature study and focus groups. Phase 2. Adding new questions and validating the new questionnaire. Research population: random sample from 7910 patients of 22 anthroposophic GPs. Data collection: survey, mixed mode by means of the Dillman method. Measuring instrument: experience questionnaire: CQ Index General Practice (56 items), added with 27 new anthroposophic items added and an item-importance questionnaire (anthroposophic items only). Statistical analyses: Factor analysis, scale construction, internal consistency (Chronbach's Alpha), inter-item-correlation, discriminative ability (Intra Class Correlation) and inter-factor-correlations. Phase 3. Modulation and selection of new questions based on results. Criteria of retaining items: general: a limited amount of items, statistical: part of a reliable scale and inter-item-correlation <0,7, and theoretical. Results Phase 1. 27 anthroposophic items. Phase 2.Two new anthroposophic scales: Scale AntroposophicTreatmentGP: seven items, Alpha=0,832, ICC=4,2 Inter-factor-correlation with existing GP-scales range from r=0,24 (Accessibility) to r=0,56 (TailoredCare). Scale InteractionalStyleGP: five items, Alpha=0,810, ICC=5,8, Inter-factor-correlation with existing GP-scales range from r=0,32 (Accessibility) to r=0,76 (TailoredCare). Inter-factorcorrelation between new scales: r=0,50. Phase 3: Adding both scales and four single items. Removing eleven items and reformulating two items. Conclusion The CQ Index Anthroposophic Healthcare measures patient experiences with anthroposophic GP's validly and reliably. Regarding the inter-factor-correlations anthroposophic quality aspects from the patients' perspective are mostly associated with individually tailored care and patient centeredness. [ABSTRACT FROM AUTHOR]

Background Patient-given global ratings are frequently interpreted as summary measures of the patient perspective, with limited understanding of what these ratings summarize. Global ratings may be determined by patient experiences on priority aspects of care. Objectives (i) identify patient priorities regarding elements of care for breast cancer, hip- or knee surgery, cataract surgery, rheumatoid arthritis and diabetes, (ii) establish whether experiences regarding priorities are associated with patient-given global ratings, and (iii) determine whether patient experiences regarding priorities are better predictors of global ratings than experiences concerning less important aspects of care. Setting and participants Data collected for the development of five consumer quality index surveys – disease-specific questionnaires that capture patient experiences and priorities – were used. Results Priorities varied: breast cancer patients for example, prioritized rapid access to care and diagnostics, while diabetics favoured dignity and appropriate frequency of tests. Experiences regarding priorities were inconsistently related to global ratings of care. Regression analyses indicated that demographics explain 2.4–8.4% of the variance in global rating. Introducing patient experiences regarding priorities increased the variance explained to 21.1–35.1%; models with less important aspects of care explained 11.8–23.2%. Conclusions Some experiences regarding priorities are strongly related to the global rating while others are poorly related. Global ratings are marginally dependent on demographics, and experiences regarding priorities are somewhat better predictors of global rating than experiences regarding less important elements. As it remains to be fully determined what global ratings summarize, caution is warranted when using these ratings as summary measures. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to identify relationships among the actual level of patient-centred care (PCC), the care gap (ideal level of PCC vs actual care delivery) and satisfaction with care., Design: This study was a cross-sectional survey., Setting: This study was conducted at two locations of a Dutch hospital (Nieuwegein and Leidsche Rijn Utrecht)., Participants: Patients visiting the outpatient clinics for heart failure, chronic obstructive pulmonary disease (COPD) and cancer in March-May 2017 were asked to fill in a questionnaire. Inclusion criteria were diagnosis with COPD, heart failure or cancer and clinic visitation for a regular appointment. A total of 186 patients filled in the questionnaire., Primary and Secondary Outcome Measures: Outcomes evaluated were the actual level of PCC, the care gap and satisfaction with care., Results: About half (45%) of the respondents were female, 38% had low educational levels and 31% were single. Respondents' mean age was 67.83 ± 10.02 (range, 16-94) years. Patients' experiences with actual care delivery and their conceptualisation of the ideal type of care differed significantly, representing care gaps, in all PCC dimensions. After controlling for background characteristics, patients' experiences with actual delivery and the care gap were related significantly to patients' satisfaction with care (β = 0.17 and β = - 0.41, respectively)., Conclusions: Patients' experiences with the actual level of PCC and the care gap are important for patients' satisfaction with care., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Current outpatient parenteral antimicrobial therapy (OPAT) guidelines recommend delivering patient-centred care. However, little is known about what patients define as good quality of OPAT care and what their needs and preferences are.The aim of this qualitative study is to explore the patients' perspective on high-quality care, and to explore what patient-centred care means to adult OPAT patients., Design and Setting: This is an explorative, descriptive study using qualitative methods. We conducted focus group interviews with 16 adult patients (5 female, 11 male) from 3 different hospitals, who received OPAT and 2 individual semistructured interviews with their informal caregivers in the Netherlands. We used purposive sampling to ensure diversity of participants. We used the eight Picker principles of patient-centredness to guide data collection and analysis., Results: Participants reported several elements considered as important for patient-centred OPAT care, like patient involvement in the decision-making process, a responsible OPAT lead, intensive collaboration between all disciplines involved, information provision and adherence to hygiene guidelines. Two central dimensions emerged as essential constituents of patient-centred OPAT care: freedom and safety. Both are heavily influenced by the behaviours of healthcare professionals and by organisational aspects beyond the direct influence of these professionals., Conclusion: This study provides insights into the needs and preferences of adult patients who receive OPAT care. Future interventions directed at the improvement of patient-centredness of OPAT care should focus on elements that enhance patients' feelings of freedom and safety., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Over the last decades, the patient perspective on health care quality has been unconditionally integrated into quality management. For several years now, patient rating sites have been rapidly gaining attention. These offer a new approach toward hearing the patient's perspective on the quality of health care.Objective: The aim of our study was to explore whether and how patient reviews of hospitals, as reported on rating sites, have the potential to contribute to health care inspector's daily supervision of hospital care.Methods: Given the unexplored nature of the topic, an interview study among hospital inspectors was designed in the Netherlands. We performed 2 rounds of interviews with 10 senior inspectors, addressing their use and their judgment on the relevance of review data from a rating site.Results: All 10 Dutch senior hospital inspectors participated in this research. The inspectors initially showed some reluctance to use the major patient rating site in their daily supervision. This was mainly because of objections such as worries about how representative they are, subjectivity, and doubts about the relevance of patient reviews for supervision. However, confrontation with, and assessment of, negative reviews by the inspectors resulted in 23% of the reviews being deemed relevant for risk identification. Most inspectors were cautiously positive about the contribution of the reviews to their risk identification.Conclusions: Patient rating sites may be of value to the risk-based supervision of hospital care carried out by the Health Care Inspectorate. Health care inspectors do have several objections against the use of patient rating sites for daily supervision. However, when they are presented with texts of negative reviews from a hospital under their supervision, it appears that most inspectors consider it as an additional source of information to detect poor quality of care. Still, it should always be accompanied and verified by other quality and safety indicators. More research on the value and usability of patient rating sites in daily hospital supervision and other health settings is needed. [ABSTRACT FROM AUTHOR]