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Background: Hypertension is a significant public health challenge, particularly in low- and middle-income countries, where its management is often inadequate. Understanding patients' experiences and perspectives is crucial for improving hypertension care. Despite a growing body of literature on hypertension in Ethiopia, most studies focus on quantitative data, leaving a significant gap in qualitative insights into patient experiences and perspectives. This study uniquely contributes to the field by exploring the lived experiences of patients in Southern Ethiopia, providing context-specific evidence to inform patient-centered hypertension management strategies. Objective: This qualitative study aimed to explore the experiences and perspectives of patients with hypertension regarding their management and care at a comprehensive hospital in Southern Ethiopia. Methods: A phenomenological approach was employed to capture the experiences and perspectives of participants. In-depth interviews were conducted with 14 patients with hypertension, selected through purposive sampling. The interviews were audio-recorded, transcribed verbatim, and analyzed using OpenCode version 4.02 software to facilitate systematic coding and thematic analysis. Then, key themes and subthemes were identified from the data related to patient experiences and perspectives providing a relevant framework for understanding the complexities of hypertension management from the patients' perspectives. Results: The six key themes emerged, depicting participants' challenges, coping strategies, and interactions with the healthcare system. The themes identified are: adherence to treatment and self-care, awareness of perceived risk and health literacy, experience with the diagnosis, family support in hypertension management, stress awareness and management, and healthcare system and proximity to facilities. Participants noted obstacles to adherence, including long waiting times, forgetting medications, and stress related to their condition. Conclusion and recommendation: The findings highlight the need for specific patient-centered strategies that address the challenges faced by hypertensive patients in Southern Ethiopia, such as reducing wait times, enhancing family involvement in care, increasing adherence, and addressing stress. Strengthening healthcare services is essential for sustainable hypertension management. [ABSTRACT FROM AUTHOR]

Abstract Background Opioid maintenance treatment (OMT) saves lives and makes it possible to start a process of health and social rehabilitation. Previous research shows that those who leave OMT after years of a drug free life and a reasonable level of health and social rehabilitation can have a good chance of living a stable drug free life after leaving the treatment. The aim of this study was to gain more knowledge about how patients who were in the process of leaving, or who had left OMT, experienced the leaving process. Methods The study was based on a thematic analysis of transcripts from individual in-depth interviews with 24 patients who had experience with leaving the Norwegian OMT program. Results: The participants in this study had a strong motivation to endure a demanding substitution medication tapering process and leave the OMT program. The tapering benefited strongly from adaptive routines based on ongoing dialog between patients and service providers throughout the process, based on individualized goals and patient experiences each step on the way. The participants had varied experiences regarding the quality and relevance of the support and meeting the need for further treatment and services. Conclusions Given a high level of rehabilitation and good support, this study shows that some OMT program patients are in a good position to successfully leave the OMT program or continue the substitution treatment on a low dosage in a less OMT program-dominated life.

Abstract Background There is little evidence on experiences in psychiatric care treatment among patients with immigrant or ethnic minority background. Knowledge about their experiences is crucial in the development of equal and high-quality services and is needed to validate instruments applied in national patient experience surveys in Norway. The aim of this scoping review is to assess and summarize current evidence on immigrant and ethnic minorities` experiences in psychiatric care treatment in Europe. Methods Guidelines from the Joanna Briggs Institute were followed and the research process adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. The literature search was carried out in Medline, Cinahl, Web of Science, Cochrane database of systematic reviews, Embase, and APA PsychInfo, up to Dec 2022, for articles on immigrant patients` experiences in psychiatric care. Reference lists of included articles were screened for additional relevant articles. Titles and abstracts were screened, and potentially relevant articles read in full-text, by two researchers. Evidence was extracted using an a priori extraction form and summarized in tables and text. Any disagreement between the reviewers regarding inclusion of articles or extracted information details were resolved through discussion between authors. Results We included eight studies in the scoping review. Immigrant and ethnic minority background patients did not differ from the general population in quantitative satisfaction questionnaires. However, qualitative studies showed that they experience a lack of understanding and respect of own culture and related needs, and difficulties in communication, which do not seem to be captured in questionnaire-based studies. Conclusion Raising awareness about the importance of respect and understanding for patients` cultural background and communication needs for treatment satisfaction should be addressed in future quality improvement work.

Background: There is little evidence on experiences in psychiatric care treatment among patients with immigrant or ethnic minority background. Knowledge about their experiences is crucial in the development of equal and high-quality services and is needed to validate instruments applied in national patient experience surveys in Norway. The aim of this scoping review is to assess and summarize current evidence on immigrant and ethnic minorities' experiences in psychiatric care treatment in Europe. Methods: Guidelines from the Joanna Briggs Institute were followed and the research process adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. The literature search was carried out in Medline, Cinahl, Web of Science, Cochrane database of systematic reviews, Embase, and APA PsychInfo, up to Dec 2022, for articles on immigrant patients' experiences in psychiatric care. Reference lists of included articles were screened for additional relevant articles. Titles and abstracts were screened, and potentially relevant articles read in full-text, by two researchers. Evidence was extracted using an a priori extraction form and summarized in tables and text. Any disagreement between the reviewers regarding inclusion of articles or extracted information details were resolved through discussion between authors. Results: We included eight studies in the scoping review. Immigrant and ethnic minority background patients did not differ from the general population in quantitative satisfaction questionnaires. However, qualitative studies showed that they experience a lack of understanding and respect of own culture and related needs, and difficulties in communication, which do not seem to be captured in questionnaire-based studies. Conclusion: Raising awareness about the importance of respect and understanding for patients' cultural background and communication needs for treatment satisfaction should be addressed in future quality improvement work. [ABSTRACT FROM AUTHOR]

Abstract Background The increasing emphasis on patient-centred care has accelerated the demand for high-quality assessment instruments, but the development and application of measures of the quality of care provided for mental health have lagged behind other areas of medicine. The main objective of this study was to determine the psychometric properties of the Psychiatric Inpatient Patient Experience Questionnaire – Continuous Electronic Measurement (PIPEQ-CEM), which consists of large-scale measurements from a Norwegian population. The change from cross-sectional surveys to continuous measurements necessitated further validation of the instrument. The secondary objective was to develop a short version of the PIPEQ-CEM. Methods The data included responses from the first year of continuous measurement, and included adult inpatients (age ≥ 18 years) who received specialized mental healthcare from 191 different sections in Norway (n = 3,249). Missing data, ceiling effects, factor structure and internal consistency levels were assessed. The short scale was developed by exploring missing items, ceiling effects, results from exploratory factor analysis (EFA) and item performance from item response theory (IRT) analyses. Results Psychometric testing supported previous results and illustrated that the PIPEQ-CEM comprises three empirically based scales with good internal consistency, reliability and validity, and covers structure and facilities, patient-centred interactions, and outcomes. A seven-item short form was developed, which provides an efficient approach for brief yet comprehensive measurements that can be applied in the future. Conclusion The PIPEQ-CEM can be recommended for use in future national surveys that assess patient experience with inpatient psychiatric care in Norway and in other countries with similar healthcare systems. The short form can be applied where respondent burden and cognitive load are crucial issues.

Abstract Background Managing multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients’ experiences and perspectives on inpatient rehabilitation in MS. Methods We conducted problem-centered interviews in 50 persons with MS in Germany, of whom most had relapsing–remitting MS. We used the maximum variation sampling method during recruitment. Data were analyzed thematically. Results As a result of the analysis, three major themes were identified: 1) factors contributing to the decision-making concerning rehabilitation, 2) experience with the rehabilitation setting, 3) benefits of rehabilitation treatments. The treating physicians’ attitude had a major impact on the decision to either opt for rehabilitation or not. Setting goals prior to rehabilitation was given a high priority. Exchanging experiences with other persons with MS presented a major benefit from rehabilitation while for some being separated from regular daily life resulted in a more ambiguous attitude ranging from appreciation of escaping daily hassles to substantial behavioral change management. Conclusion Patients reported various experiences in the process of decision-making with regard to rehabilitation. Physicians´ advice, goal setting and the selection of the most suitable rehabilitation clinic were considered most relevant.

Abstract Background Research on patients’ perceptions of cancer care often documents sub-optimal experiences. Cancer care quality issues include restricted service access, lack of care coordination, gaps in follow-up and “generic” rather than person-centered care. Recent reports underscore that proactively and periodically seeking user feedback is crucial for timely care quality improvement. The present study aimed to analyze and thematically organize a large amount of feedback from patients who had been treated for cancer within the last 6 months. Methods Randomly selected participants (N = 3,278) from 3 University-affiliated cancer centres in Montreal, Quebec, Canada completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) and an open-ended question on their perceptions of the care they received. 692 participants responded to the latter. Guided by the Cancer Experience Measurement Framework (CEMF), their feedback was analyzed using a qualitative thematic approach. Results Cancer care perceptions included sub-themes of care access and coordination, continuity/transition, and perceived appropriateness/personalisation of care. The most salient theme was captured by care access and coordination with 284 comments (44%) directly addressing these issues. The ways in which health care services were structured including setting, schedule, and location were often raised as cause for concerns. Issues surrounding cancer information/education, emotional support, and physical comfort were frequently reported as unmet needs. In addition, limited access to cancer services led patients to seek alternatives such as going to emergency departments and/or private care. Conclusions These findings are timely as they show that most patients are well aware of quality issues in cancer care and are willing to report candidly on these. Patient feedback also underscore the importance for cancer care institutions to periodically gather patient-reported data so that systems can re-calibrate their service offerings according to these data. Ultimately, patient reports will translate into enhanced quality, personalization, and safer cancer care provision.

Abstract Background Capacity-based mental health legislation was introduced in Norway on 1 September 2017. The aim was to increase the autonomy of patients with severe mental illness and to bring mental health care in line with human rights. The aim of this study is to explore patient experiences of how far the new legislation has enabled them to be involved in decisions on their treatment after they were assessed as capable of giving consent and had their community treatment order (CTO) revoked due to the change in the legislation. Method Individual in-depth interviews were conducted from September 2019 to March 2020 with twelve people with experience as CTO patients. Interviews were transcribed and analysed using thematic analysis inspired by hermeneutics. Results Almost all interviewees were receiving the same health care over two years after their CTO was terminated. Following the new legislation, they found it easier to be involved in treatment decisions when off a CTO than they had done in periods without a CTO before the amendment. Being assessed as having capacity to consent had enhanced their autonomy, their dialogues and their feeling of being respected in encounters with health care personnel. However, several participants felt insecure in such encounters and some still felt passive and lacking in initiative due to their previous experiences of coercion. They were worried about becoming acutely ill and again being subjected to involuntary treatment. Conclusion The introduction of capacity-based mental health legislation seems to have fulfilled the intention that treatment and care should, as far as possible, be provided in accordance with patients’ wishes. Systematic assessment of capacity to consent seems to increase the focus on patients’ condition, level of functioning and opinions in care and treatment. Stricter requirements for health care providers to find solutions in cooperation with patients seem to lead to new forms of collaboration between patients and health care personnel, where patients have become more active participants in their own treatment and receive help to make more informed choices.

Abstract Background Due to the growing population of older people across the world, providing safe and effective care is an increasing concern. Older persons in need for hospitalisation often have, or are susceptible to develop, cognitive impairment. Hospitals need to adapt to ensure high-quality care for this vulnerable patient group. Several age-friendly frameworks and models aiming at reducing risks and complications have been promoted. However, care for older people must be based on the persons’ reported needs, and relatives are often an important part of older persons’ social support. The primary aim of this study was to explore older peoples’ and their relatives’ experiences of acute hospitalisation and determine what is important for them to experience a good hospital stay. The study was not limited to patients with cognitive impairment; but included a wider group of older individuals vulnerable to developing delirium, with or without an underlying chronic cognitive impairment. Methods This study had a qualitative research design in which people aged 75 years or older and their relatives were interviewed during an acute hospitalisation. The study was conducted at two medical wards at a large university hospital in Norway, and included a total of 60 participants. All interviews were informed by a semi-structured interview guide and were thematically analysed. Results Four major themes were identified in the older people’s and the relatives’ descriptions of how they experienced the hospital stay and what was important for them during the hospital stay: being seen and valued as a person, individualised care, patient-adapted communication and information, and collaboration with relatives. The themes span both positive and negative experiences, reflecting great variability in the experiences described. The presence of these four characteristics promoted positive experiences among patients and relatives, whereas the absence or negative valuation of them promoted negative experiences. Conclusions The findings underscore the interrelatedness of older people and their relatives and that patients and relatives are quite consistent in their experiences and opinions. This suggests that listening to the concerns of relatives is important, as they can voice the older patient’s needs and concerns in situations where older people might find it difficult to do so. Furthermore, the results underscore how ‘small things’ matter in relation to how health professionals capture the patient’s individual values, need for care, information and involvement of relatives and that these are essential to ensure predictability and security and a good stay for older people and their relatives.

Abstract Background Dutch standard diabetes care is generally protocol-driven. However, considering that general practices wish to tailor diabetes care to individual patients and encourage self-management, particularly in light of current COVID-19 related constraints, protocols and other barriers may hinder implementation. The impact of dispensing with protocol and implementation of self-management interventions on patient monitoring and experiences are not known. This study aims to evaluate tailoring of care by understanding experiences of well-organised practices 1) when dispensing with protocol; 2) determining the key conditions for successful implementation of self-management interventions; and furthermore exploring patients’ experiences regarding dispensing with protocol and self-management interventions. Methods in this mixed-methods prospective study, practices (n = 49) were invited to participate if they met protocol-related quality targets, and their adult patients with well-controlled type 2 diabetes were invited if they had received protocol-based diabetes care for a minimum of 1 year. For practices, study participation consisted of the opportunity to deliver protocol-free diabetes care, with selection and implementation of self-management interventions. For patients, study participation provided exposure to protocol-free diabetes care and self-management interventions. Qualitative outcomes (practices: 5 focus groups, 2 individual interviews) included experiences of dispensing with protocol and the implementation process of self-management interventions, operationalised as implementation fidelity. Quantitative outcomes (patients: routine registry data, surveys) consisted of diabetes monitoring completeness, satisfaction, wellbeing and health status at baseline and follow-up (24 months). Results Qualitative: In participating practices (n = 4), dispensing with protocol encouraged reflection on tailored care and selection of various self-management interventions A focus on patient preferences, team collaboration and intervention feasibility was associated with high implementation fidelity Quantitative: In patients (n = 126), likelihood of complete monitoring decreased significantly after two years (OR 0.2 (95% CI 0.1–0.5), p

Abstract Background Besides coping with a disease with many uncertainties, people with relapsing-remitting multiple sclerosis face complex decisions concerning disease-modifying therapies (DMTs). In an interview study, we aimed to assess patients’ experiences with DMTs. Methods Problem-centred interviews were conducted with 50 people with relapsing-remitting multiple sclerosis in Germany using maximum variation sampling and covering all licensed DMTs. Data were analysed thematically using deductive and inductive categories. Results 47 of 50 patients had treatment with at least one of the approved DMTs. The main themes were: (1) starting a DMT, (2) switching to another DMT, (3) discontinuing a DMT, and (4) multiple sclerosis without starting a DMT. Different intercorrelated factors influenced the decision-making processes for or against a DMT. Individual experiences with DMTs in daily life contained the effort in administration, success, and failure of DMTs, coping strategies and well-being without DMTs. The decision-making process for or against a DMT and the use of those treatments can be understood as a constant, continually shifting process, complicated by different factors, which change over time. Experiences with DMTs were characterized by attempts to handle uncertainty and to (re)gain control and integrate adaptivity into one’s life. Conclusions The study provides a rich and nuanced amount of patients’ experiences with DMTs. The findings demonstrate the importance for practitioners to look at current life circumstances of patients with multiple sclerosis when recommending a DMT and to promote and enable patients to make informed decisions.

Background: The increasing emphasis on patient-centred care has accelerated the demand for high-quality assessment instruments, but the development and application of measures of the quality of care provided for mental health have lagged behind other areas of medicine. The main objective of this study was to determine the psychometric properties of the Psychiatric Inpatient Patient Experience Questionnaire - Continuous Electronic Measurement (PIPEQ-CEM), which consists of large-scale measurements from a Norwegian population. The change from cross-sectional surveys to continuous measurements necessitated further validation of the instrument. The secondary objective was to develop a short version of the PIPEQ-CEM.Methods: The data included responses from the first year of continuous measurement, and included adult inpatients (age ≥ 18 years) who received specialized mental healthcare from 191 different sections in Norway (n = 3,249). Missing data, ceiling effects, factor structure and internal consistency levels were assessed. The short scale was developed by exploring missing items, ceiling effects, results from exploratory factor analysis (EFA) and item performance from item response theory (IRT) analyses.Results: Psychometric testing supported previous results and illustrated that the PIPEQ-CEM comprises three empirically based scales with good internal consistency, reliability and validity, and covers structure and facilities, patient-centred interactions, and outcomes. A seven-item short form was developed, which provides an efficient approach for brief yet comprehensive measurements that can be applied in the future.Conclusion: The PIPEQ-CEM can be recommended for use in future national surveys that assess patient experience with inpatient psychiatric care in Norway and in other countries with similar healthcare systems. The short form can be applied where respondent burden and cognitive load are crucial issues. [ABSTRACT FROM AUTHOR]

Background: Managing multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients' experiences and perspectives on inpatient rehabilitation in MS.Methods: We conducted problem-centered interviews in 50 persons with MS in Germany, of whom most had relapsing-remitting MS. We used the maximum variation sampling method during recruitment. Data were analyzed thematically.Results: As a result of the analysis, three major themes were identified: 1) factors contributing to the decision-making concerning rehabilitation, 2) experience with the rehabilitation setting, 3) benefits of rehabilitation treatments. The treating physicians' attitude had a major impact on the decision to either opt for rehabilitation or not. Setting goals prior to rehabilitation was given a high priority. Exchanging experiences with other persons with MS presented a major benefit from rehabilitation while for some being separated from regular daily life resulted in a more ambiguous attitude ranging from appreciation of escaping daily hassles to substantial behavioral change management.Conclusion: Patients reported various experiences in the process of decision-making with regard to rehabilitation. Physicians´ advice, goal setting and the selection of the most suitable rehabilitation clinic were considered most relevant. [ABSTRACT FROM AUTHOR]

Abstract Background Surgery can correct congenital heart defects, but disease management in low- and middle-income countries can be challenging and complex due to a lack of referral system, financial resources, human resources, and infrastructure for surgical and post-operative care. This study investigates the experiences of caregivers of children with CHD accessing the health care system and pediatric cardiac surgery. Methods A qualitative study was conducted at a teaching hospital in Ethiopia. We conducted semi-structured interviews with 13 caregivers of 10 patients with CHD who underwent cardiac surgery. We additionally conducted chart reviews for triangulation and verification. Interviews were conducted in Amharic and then translated into English. Data were analyzed according to the principles of interpretive thematic analysis, informed by the candidacy framework. Results The following four observations emerged from the interviews: (a) most patients were diagnosed with CHD at birth if they were born at a health care facility, but for those born at home, CHD was discovered much later (b) many patients experienced misdiagnoses before seeking care at a large hospital, (c) after diagnosis, patients were waiting for the surgery for more than a year, (d) caregivers felt anxious and optimistic once they were able to schedule the surgical date. During the care-seeking journey, caregivers encountered financial constraints, struggled in a fragmented delivery system, and experienced poor service quality. Conclusions Delayed access to care was largely due to the lack of early CHD recognition and financial hardships, related to the inefficient and disorganized health care system. Fee waivers were available to assist low-income children in gaining access to health services or medications, but application information was not readily available. Indirect costs like long-distance travel contributed to this challenge. Overall, improvements must be made for district-level screening and the health care workforce.

Background: Research on patients' perceptions of cancer care often documents sub-optimal experiences. Cancer care quality issues include restricted service access, lack of care coordination, gaps in follow-up and "generic" rather than person-centered care. Recent reports underscore that proactively and periodically seeking user feedback is crucial for timely care quality improvement. The present study aimed to analyze and thematically organize a large amount of feedback from patients who had been treated for cancer within the last 6 months.Methods: Randomly selected participants (N = 3,278) from 3 University-affiliated cancer centres in Montreal, Quebec, Canada completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) and an open-ended question on their perceptions of the care they received. 692 participants responded to the latter. Guided by the Cancer Experience Measurement Framework (CEMF), their feedback was analyzed using a qualitative thematic approach.Results: Cancer care perceptions included sub-themes of care access and coordination, continuity/transition, and perceived appropriateness/personalisation of care. The most salient theme was captured by care access and coordination with 284 comments (44%) directly addressing these issues. The ways in which health care services were structured including setting, schedule, and location were often raised as cause for concerns. Issues surrounding cancer information/education, emotional support, and physical comfort were frequently reported as unmet needs. In addition, limited access to cancer services led patients to seek alternatives such as going to emergency departments and/or private care.Conclusions: These findings are timely as they show that most patients are well aware of quality issues in cancer care and are willing to report candidly on these. Patient feedback also underscore the importance for cancer care institutions to periodically gather patient-reported data so that systems can re-calibrate their service offerings according to these data. Ultimately, patient reports will translate into enhanced quality, personalization, and safer cancer care provision. [ABSTRACT FROM AUTHOR]

Background: Capacity-based mental health legislation was introduced in Norway on 1 September 2017. The aim was to increase the autonomy of patients with severe mental illness and to bring mental health care in line with human rights.  The aim of this study is to explore patient experiences of how far the new legislation has enabled them to be involved in decisions on their treatment after they were assessed as capable of giving consent and had their community treatment order (CTO) revoked due to the change in the legislation.Method: Individual in-depth interviews were conducted from September 2019 to March 2020 with twelve people with experience as CTO patients. Interviews were transcribed and analysed using thematic analysis inspired by hermeneutics.Results: Almost all interviewees were receiving the same health care over two years after their CTO was terminated. Following the new legislation, they found it easier to be involved in treatment decisions when off a CTO than they had done in periods without a CTO before the amendment. Being assessed as having capacity to consent had enhanced their autonomy, their dialogues and their feeling of being respected in encounters with health care personnel. However, several participants felt insecure in such encounters and some still felt passive and lacking in initiative due to their previous experiences of coercion. They were worried about becoming acutely ill and again being subjected to involuntary treatment.Conclusion: The introduction of capacity-based mental health legislation seems to have fulfilled the intention that treatment and care should, as far as possible, be provided in accordance with patients' wishes. Systematic assessment of capacity to consent seems to increase the focus on patients' condition, level of functioning and opinions in care and treatment. Stricter requirements for health care providers to find solutions in cooperation with patients seem to lead to new forms of collaboration between patients and health care personnel, where patients have become more active participants in their own treatment and receive help to make more informed choices. [ABSTRACT FROM AUTHOR]

Abstract Background Patient experience is an important indicator of quality of health care. In Norway, little is known about the quality of health care for immigrants. The aim of this study was to compare patient-reported experiences with general practice between the Norwegian-born population and immigrant groups. Methods We performed secondary analyses of data from a national survey on patient experiences with general practice, including assessments of general practitioners (GPs) and their GP offices. The survey was carried out in Norway in 2018–19. The total number of respondents was 2029, with a response rate of 42.6%. Region of birth was available for 1981 participants, and these were included in the analyses (“Norway” (N = 1756), “Asia, Africa or South America” (N = 95), “Eastern Europe” (N = 70) and “Western Europe, North America or Oceania” (N = 60)). Five indicators of patient experiences were used as dependent variables in bivariate and multivariate analyses, with region of birth as the main exposure variable and other background variables about the patient as adjustment variables: “the GP” (measures related to communication and competency), “auxiliary staff” (politeness, competency, organization), “accessibility” (waiting times), “coordination” (with other services) and `enablement` (GP facilitates coping with/understanding illness). Results Immigrants as a whole reported poorer experiences with general practice than the majority population, with significantly poorer scores on four of five patient experience indicators. Patients from Asia/Africa/South America reported poorer experiences than those from Norway on the indicators “GP”, “auxiliary staff”, “accessibility” and “coordination”: on a scale from 0 to 100 where 100 is the best, the difference ranged from 7.8 (GP) to 20.3 (accessibility). Patients from Eastern Europe reported lower scores on “GP” and patients from Western Europe/North America/Oceania reported lower scores on “auxiliary staff”. These associations were still significant after adjustment for sex, age, self-rated physical and mental health, number of contacts with the GP and education. Conclusions For countries with a substantial proportion of foreign-born patients in the health system, immigrant background is an important parameter in quality improvement work. Immigrant background is also an important parameter in health service research.

Abstract Background Patient experience surveys are increasingly conducted in cancer care as they provide important results to consider in future development of cancer care and health policymaking. These surveys usually include closed-ended questions (patient-reported experience measures (PREMs)) and space for free-text comments, but published results are mostly based on PREMs. We aimed to identify the underlying themes of patients’ experiences as shared in their own words in the Swiss Cancer Patient Experiences (SCAPE) survey and compare these themes with those assessed with PREMs to investigate how the textual analysis of free-text comments contributes to the understanding of patients’ experiences of care. Methods SCAPE is a multicenter cross-sectional survey that was conducted between October 2018 and March 2019 in French-speaking parts of Switzerland. Patients were invited to rate their care in 65 closed-ended questions (PREMs) and to add free-text comments regarding their cancer-related experiences at the end of the survey. We conducted computer-assisted textual analysis using the IRaMuTeQ software on the comments provided by 31% (n = 844) of SCAPE survey respondents (n = 2755). Results We identified five main thematic classes, two of which consisting of a detailed description of ‘cancer care pathways’. The remaining three classes were related to ‘medical care’, ‘gratitude and praise’, and the way patients lived with cancer (‘cancer and me’). Further analysis of this last class showed that patients’ comments related to the following themes: ‘initial shock’, ‘loneliness’, ‘understanding and acceptance’, ‘cancer repercussions’, and ‘information and communication’. While closed-ended questions related mainly to factual aspects of experiences of care, free-text comments related primarily to the personal and emotional experiences and consequences of having cancer and receiving care. Conclusions A computer-assisted textual analysis of free-text in our patient survey allowed a time-efficient classification of free-text data that provided insights on the personal experience of living with cancer and additional information on patient experiences that had not been collected with the closed-ended questions, underlining the importance of offering space for comments. Such results can be useful to inform questionnaire development, provide feedback to professional teams, and guide patient-centered initiatives to improve the quality and safety of cancer care.

Abstract Background It is known that the use of a Patient Decision Aid (PtDA), combined with advice for professionals on how and when to use it, can enhance the involvement of patients in the treatment decision. However, we need more knowledge with respect to the intention-behaviour gap. This study aims to analyse patients’ experiences with the Shared Decision Making (SDM) process to find clues to close this gap. Methods This qualitative study was part of a pilot study aiming to implement SDM in early adopter breast cancer teams. Patients were given access to a personalised PtDA. Breast cancer teams were instructed on how and when to deliver the PtDA. We interviewed 20 patients about their experience with the PtDA and SDM in general. Results Most patients experienced SDM, though to a certain extent. Choice talk and option talk were commonly experienced, however the elicitation of preferences and decision talk was rare. The PtDA was used by the majority of patients (N = 13), all indicating that it was useful, especially to recall all the information given. Patients appreciated the contribution of breast cancer nurses in the SDM process. They considered them as true case managers, easy to approach and supportive. Conclusion Although patients felt well-informed and satisfied about risk-communication, the elicitation of preferences appeared very limited to non-existent. We recommend that breast cancer teams divide tasks in the SDM process and reallocate the elicitation of preferences to the nurses in a well-defined clinical pathway.

Background: Dutch standard diabetes care is generally protocol-driven. However, considering that general practices wish to tailor diabetes care to individual patients and encourage self-management, particularly in light of current COVID-19 related constraints, protocols and other barriers may hinder implementation. The impact of dispensing with protocol and implementation of self-management interventions on patient monitoring and experiences are not known. This study aims to evaluate tailoring of care by understanding experiences of well-organised practices 1) when dispensing with protocol; 2) determining the key conditions for successful implementation of self-management interventions; and furthermore exploring patients' experiences regarding dispensing with protocol and self-management interventions.Methods: in this mixed-methods prospective study, practices (n = 49) were invited to participate if they met protocol-related quality targets, and their adult patients with well-controlled type 2 diabetes were invited if they had received protocol-based diabetes care for a minimum of 1 year. For practices, study participation consisted of the opportunity to deliver protocol-free diabetes care, with selection and implementation of self-management interventions. For patients, study participation provided exposure to protocol-free diabetes care and self-management interventions. Qualitative outcomes (practices: 5 focus groups, 2 individual interviews) included experiences of dispensing with protocol and the implementation process of self-management interventions, operationalised as implementation fidelity. Quantitative outcomes (patients: routine registry data, surveys) consisted of diabetes monitoring completeness, satisfaction, wellbeing and health status at baseline and follow-up (24 months).Results: Qualitative: In participating practices (n = 4), dispensing with protocol encouraged reflection on tailored care and selection of various self-management interventions A focus on patient preferences, team collaboration and intervention feasibility was associated with high implementation fidelity Quantitative: In patients (n = 126), likelihood of complete monitoring decreased significantly after two years (OR 0.2 (95% CI 0.1-0.5), p < 0.001) Satisfaction decreased slightly (- 1.6 (95% CI -2.6;-0.6), p = 0.001) Non-significant declines were found in wellbeing (- 1.3 (95% CI -5.4; 2.9), p = 0.55) and health status (- 3.0 (95% CI -7.1; 1.2), p = 0.16).Conclusions: To tailor diabetes care to individual patients within well-organised practices, we recommend dispensing with protocol while maintaining one structural annual monitoring consultation, combined with the well-supported implementation of feasible self-management interventions. Interventions should be selected and delivered with the involvement of patients and should involve population preferences and solid team collaborations. [ABSTRACT FROM AUTHOR]

Background: Besides coping with a disease with many uncertainties, people with relapsing-remitting multiple sclerosis face complex decisions concerning disease-modifying therapies (DMTs). In an interview study, we aimed to assess patients' experiences with DMTs.Methods: Problem-centred interviews were conducted with 50 people with relapsing-remitting multiple sclerosis in Germany using maximum variation sampling and covering all licensed DMTs. Data were analysed thematically using deductive and inductive categories.Results: 47 of 50 patients had treatment with at least one of the approved DMTs. The main themes were: (1) starting a DMT, (2) switching to another DMT, (3) discontinuing a DMT, and (4) multiple sclerosis without starting a DMT. Different intercorrelated factors influenced the decision-making processes for or against a DMT. Individual experiences with DMTs in daily life contained the effort in administration, success, and failure of DMTs, coping strategies and well-being without DMTs. The decision-making process for or against a DMT and the use of those treatments can be understood as a constant, continually shifting process, complicated by different factors, which change over time. Experiences with DMTs were characterized by attempts to handle uncertainty and to (re)gain control and integrate adaptivity into one's life.Conclusions: The study provides a rich and nuanced amount of patients' experiences with DMTs. The findings demonstrate the importance for practitioners to look at current life circumstances of patients with multiple sclerosis when recommending a DMT and to promote and enable patients to make informed decisions. [ABSTRACT FROM AUTHOR]

Abstract Background Patient experience with primary health care services can vary markedly between different types of health care facilities, even within the same country setting. Given known benefits of high quality primary health care, the performance of these facilities may significantly impact population health. The aim of this study was to compare the quality of primary care in different types of health facilities as experienced by Vietnamese consumers. Methods 1662 people who utilized primary health care services at least once over the past two years in various types of facilities in central Vietnam were surveyed in a cross-sectional study using the Vietnamese version of the Primary Care Assessment Tool (VN PCAT-AE) to assess overall primary care quality as well as several different domains of high quality primary care services. Results Commune health centers were associated with the highest overall primary care quality (PCAT expanded score 21.07, p

Abstract Background Healthcare institutions deliver essential services that practically everyone needs at least periodically over the course of their lives. Hospital admissions, in particular, place patients in circumstances very foreign to them, with uncertain outcomes often being the case, causing stress for care recipients and their loved ones. Health and medical establishments must be very mindful of this and work toward supplying environments that are as comforting as possible for those in their care. Discussion One avenue for relieving patients and their loved ones of hardships that complicate already difficult situations involves the development and implementation of Good Samaritan programs. Termed in reference to the biblical Good Samaritan who attended to the physical and emotional needs of his neighbor, these programs supply aid and comfort over and above that which traditionally has been delivered to patients in healthcare delivery settings, fostering satisfaction, positive word-of-mouth communications, and loyalty. Willis-Knighton Health System operates a Good Samaritan program, notably including a patient concierge team, complimentary lodging, and free transportation, with the offering greatly improving the patient experience. This article profiles Willis-Knighton Health System’s Good Samaritan program and supplies a blueprint for establishing similar offerings in virtually any healthcare entity. Conclusions Good Samaritan programs provide significant support and assistance to care recipients and their loved ones at particularly difficult times. Willis-Knighton Health System has observed firsthand the many benefits afforded by its Good Samaritan program, relieving those served by the establishment of many burdens and endearing them to the institution for its associated investments which foster peace of mind.

Background: Surgery can correct congenital heart defects, but disease management in low- and middle-income countries can be challenging and complex due to a lack of referral system, financial resources, human resources, and infrastructure for surgical and post-operative care. This study investigates the experiences of caregivers of children with CHD accessing the health care system and pediatric cardiac surgery.Methods: A qualitative study was conducted at a teaching hospital in Ethiopia. We conducted semi-structured interviews with 13 caregivers of 10 patients with CHD who underwent cardiac surgery. We additionally conducted chart reviews for triangulation and verification. Interviews were conducted in Amharic and then translated into English. Data were analyzed according to the principles of interpretive thematic analysis, informed by the candidacy framework.Results: The following four observations emerged from the interviews: (a) most patients were diagnosed with CHD at birth if they were born at a health care facility, but for those born at home, CHD was discovered much later (b) many patients experienced misdiagnoses before seeking care at a large hospital, (c) after diagnosis, patients were waiting for the surgery for more than a year, (d) caregivers felt anxious and optimistic once they were able to schedule the surgical date. During the care-seeking journey, caregivers encountered financial constraints, struggled in a fragmented delivery system, and experienced poor service quality.Conclusions: Delayed access to care was largely due to the lack of early CHD recognition and financial hardships, related to the inefficient and disorganized health care system. Fee waivers were available to assist low-income children in gaining access to health services or medications, but application information was not readily available. Indirect costs like long-distance travel contributed to this challenge. Overall, improvements must be made for district-level screening and the health care workforce. [ABSTRACT FROM AUTHOR]

Background: Patient experience is an important indicator of quality of health care. In Norway, little is known about the quality of health care for immigrants. The aim of this study was to compare patient-reported experiences with general practice between the Norwegian-born population and immigrant groups.Methods: We performed secondary analyses of data from a national survey on patient experiences with general practice, including assessments of general practitioners (GPs) and their GP offices. The survey was carried out in Norway in 2018-19. The total number of respondents was 2029, with a response rate of 42.6%. Region of birth was available for 1981 participants, and these were included in the analyses ("Norway" (N = 1756), "Asia, Africa or South America" (N = 95), "Eastern Europe" (N = 70) and "Western Europe, North America or Oceania" (N = 60)). Five indicators of patient experiences were used as dependent variables in bivariate and multivariate analyses, with region of birth as the main exposure variable and other background variables about the patient as adjustment variables: "the GP" (measures related to communication and competency), "auxiliary staff" (politeness, competency, organization), "accessibility" (waiting times), "coordination" (with other services) and `enablement` (GP facilitates coping with/understanding illness).Results: Immigrants as a whole reported poorer experiences with general practice than the majority population, with significantly poorer scores on four of five patient experience indicators. Patients from Asia/Africa/South America reported poorer experiences than those from Norway on the indicators "GP", "auxiliary staff", "accessibility" and "coordination": on a scale from 0 to 100 where 100 is the best, the difference ranged from 7.8 (GP) to 20.3 (accessibility). Patients from Eastern Europe reported lower scores on "GP" and patients from Western Europe/North America/Oceania reported lower scores on "auxiliary staff". These associations were still significant after adjustment for sex, age, self-rated physical and mental health, number of contacts with the GP and education.Conclusions: For countries with a substantial proportion of foreign-born patients in the health system, immigrant background is an important parameter in quality improvement work. Immigrant background is also an important parameter in health service research. [ABSTRACT FROM AUTHOR]

Background: Patient experience surveys are increasingly conducted in cancer care as they provide important results to consider in future development of cancer care and health policymaking. These surveys usually include closed-ended questions (patient-reported experience measures (PREMs)) and space for free-text comments, but published results are mostly based on PREMs. We aimed to identify the underlying themes of patients' experiences as shared in their own words in the Swiss Cancer Patient Experiences (SCAPE) survey and compare these themes with those assessed with PREMs to investigate how the textual analysis of free-text comments contributes to the understanding of patients' experiences of care.Methods: SCAPE is a multicenter cross-sectional survey that was conducted between October 2018 and March 2019 in French-speaking parts of Switzerland. Patients were invited to rate their care in 65 closed-ended questions (PREMs) and to add free-text comments regarding their cancer-related experiences at the end of the survey. We conducted computer-assisted textual analysis using the IRaMuTeQ software on the comments provided by 31% (n = 844) of SCAPE survey respondents (n = 2755).Results: We identified five main thematic classes, two of which consisting of a detailed description of 'cancer care pathways'. The remaining three classes were related to 'medical care', 'gratitude and praise', and the way patients lived with cancer ('cancer and me'). Further analysis of this last class showed that patients' comments related to the following themes: 'initial shock', 'loneliness', 'understanding and acceptance', 'cancer repercussions', and 'information and communication'. While closed-ended questions related mainly to factual aspects of experiences of care, free-text comments related primarily to the personal and emotional experiences and consequences of having cancer and receiving care.Conclusions: A computer-assisted textual analysis of free-text in our patient survey allowed a time-efficient classification of free-text data that provided insights on the personal experience of living with cancer and additional information on patient experiences that had not been collected with the closed-ended questions, underlining the importance of offering space for comments. Such results can be useful to inform questionnaire development, provide feedback to professional teams, and guide patient-centered initiatives to improve the quality and safety of cancer care. [ABSTRACT FROM AUTHOR]

Background: Healthcare services are facing extensive challenges due to the increased proportion of elderly persons and persons with chronic disease. Technology enabled care (TEC) is a collective term for telecare, telehealth, telemedicine, mobile (m)-, digital- and electronic (e) health services. TEC is increasingly seen as a solution to many of the challenges facing the health sector. Patient perspectives may provide a useful evaluation tool for new healthcare technologies that have limited clinical data to support their effectiveness. More studies need to be done to better understand the acceptance of technology in healthcare. This review aim to summarize empirical studies exploring patient experiences with TEC. Findings in this study can be used to better understand what is needed to develop, implement and improve such services.Methods: Systematic searches were conducted in the Pubmed, Psycinfo, Cinahl, Embase, Cochrane systematic reviews and Cochrane clinical trials databases. These studies were systematically reviewed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, subjected to quality appraisals using the Critical Appraisal Skills Program (CASP), and synthesized via integrative analysis.Results: After removal of duplicates, languages other than English, and non-scientific records, 4087 titles and abstracts were screened. After assessment against inclusion and exclusion criteria, 69 records were screened in full-text, and underwent quality appraisal. 21 records were included in the integrative analysis. Patients' experiences with TEC related to 1) technological features, namely functionality and appearance, and 2) evolving independence, namely empowerment, autonomy and security. Technological challenges lead to frustrations and negative experiences, while a stigmatizing appearance lead to patients not using the solution. Through the use of TECs, patients felt more empowered, learning about their condition, increasing awareness to their symptoms and treatment, and feeling more safe and self-efficient. Patient participation was seen as a central aspect of the development of the TECT, as well as when using it.Conclusion: This review deepens the understanding of patients' experiences with technology enabled care solutions. Patients' experiences not only relate to the practical/technical element of the device or solution, but to how this impact on their everyday life. Patient participation in development and planned use of such solutions should be considered an integral part in healthcare quality initiatives. [ABSTRACT FROM AUTHOR]

Background: It is known that the use of a Patient Decision Aid (PtDA), combined with advice for professionals on how and when to use it, can enhance the involvement of patients in the treatment decision. However, we need more knowledge with respect to the intention-behaviour gap. This study aims to analyse patients' experiences with the Shared Decision Making (SDM) process to find clues to close this gap.Methods: This qualitative study was part of a pilot study aiming to implement SDM in early adopter breast cancer teams. Patients were given access to a personalised PtDA. Breast cancer teams were instructed on how and when to deliver the PtDA. We interviewed 20 patients about their experience with the PtDA and SDM in general.Results: Most patients experienced SDM, though to a certain extent. Choice talk and option talk were commonly experienced, however the elicitation of preferences and decision talk was rare. The PtDA was used by the majority of patients (N = 13), all indicating that it was useful, especially to recall all the information given. Patients appreciated the contribution of breast cancer nurses in the SDM process. They considered them as true case managers, easy to approach and supportive.Conclusion: Although patients felt well-informed and satisfied about risk-communication, the elicitation of preferences appeared very limited to non-existent. We recommend that breast cancer teams divide tasks in the SDM process and reallocate the elicitation of preferences to the nurses in a well-defined clinical pathway. [ABSTRACT FROM AUTHOR]

Abstract Background People who struggle with mental health problems can provide valuable insight into understanding and improving the coordination of mental health and welfare services. The aims of the study were to explore service users’ experiences and perceptions of continuity of care within and across services relevant to personal recovery, to elicit which dimensions of continuity of care are most essential to service users, and to generate ideas for improving service users’ experiences of continuity of care. Methods In the context of a hermeneutic-phenomenological approach, ten service users at a community mental health centre were interviewed about their experiences of continuity of care in and across services. Eight of these were re-interviewed two years later. A collaborative research approach was adopted. Data were analysed by means of a data-driven stepwise approach in line with thematic analysis. Results Following the analysis five themes representing experiences of continuity of care were developed. Each theme ranged from poor to good experiences of continuity of care: Relationship – from experiencing frequent setbacks and anxiety due to breaks in relationships, to feeling safe in an ongoing personal relationship; Timeliness – from experiencing frustrating waiting times with worsening of problems, to getting help when needed; Mutuality – from having a one-sided struggle, to a situation in which both professionals and service users take initiatives; Choice – from not having the opportunity to make practical arrangements within the context of one’s everyday life, to having an array of support options to choose from; Knowledge – from feeling confused and insecure because one does not know what is happening, to feeling safe because one is informed about what is going to happen. Participants provided a range of suggestions for improving experiences of continuity of care. Conclusions A discrepancy between aspects of continuity that are essential for service users and their experiences of actual practice was revealed. The valid evidence generated in the present collaborative study therefore offers knowledge to policy makers, professionals and service users that may be of help in their future efforts in orienting primary care, mental health, addiction and welfare services towards recovery.

Abstract Background Many survey studies in health care adjust for demographic characteristics such as age, gender, educational attainment and general health when performing statistical analyses. Whether the effects of these demographic characteristics are consistent between patient groups remains to be determined. This is important as the rationale for adjustment is often that demographic sub-groups differ in their so-called ‘response tendency’. This rationale may be less convincing if the effects of response tendencies vary across patient groups. The present paper examines whether the impact of these characteristics on patients’ global rating of care varies across patient groups. Methods Secondary analyses using multi-level regression models were performed on a dataset including 32 different patient groups and 145,578 observations. For each demographic variable, the 95% expected range of case-mix coefficients across patient groups is presented. In addition, we report whether the variance of coefficients for demographic variables across patient groups is significant. Results Overall, men, elderly, lower educated people and people in good health tend to give higher global ratings. However, these effects varied significantly across patient groups and included the possibility of no effect or an opposite effect in some patient groups. Conclusion The response tendency attributed to demographic characteristics – such as older respondents being milder, or higher educated respondents being more critical – is not general or universal. As such, the mechanism linking demographic characteristics to survey results on patient experiences with quality of care is more complicated than a general response tendency. It is possible that the response tendency interacts with patient group, but it is also possible that other mechanisms are at play.

Abstract Background Decentralised acute care services have, through the establishment of municipality acute wards (MAWs), been launched in Norway. The aim is to provide treatment for patients who otherwise would need hospitalisation. Currently there is a lack of studies investigating patient experiences in such services. The aims of this study were therefore to a) translate and validate the Picker Patient Experience Questionnaire (PPE-15) in Norwegian, and b) assess patient experiences in decentralised acute care, and potential factors associated with these experiences. Methods Patients were recruited from five municipal acute wards in southeastern Norway during the period from June 2014 to June 2015. Data on socio-demographics, length of stay and comorbidity (Charlson comorbidity index (CCI)) were collected. Patients completed the Picker Patient Experience Questionnaire (PPE-15) and the EuroQOL 5-dimension, 3-level version. Convergent validity of the PPE-15 was assessed by correlation of items in PPE-15 and the Nordic Patient Experience Questionnaire (NORPEQ). A retest of the PPE-15 was performed in a subgroup of patients approximately 3 weeks after baseline assessment. Test-retest agreement was assessed with Cohens’ unweighted Kappa. Results A total of 479 patients responded, median age 78.0 years and 41.8% men. A total of 68 patients participated in the retest. Testing of convergent validity revealed an overall weak to moderate correlation. Kappa statistics showed from fair to good test-retest agreement. Most problems were related to continuity and transition, while fewest problems were related to respect for patient preferences. A higher Charlson comorbidity score was the only variable that was negatively associated with patient experience. Conclusion Patients reported problems in several items of the PPE-15 after discharge from decentralised acute wards. The findings from the current study may be helpful for planning ways to improve quality of care, e.g., by providing feedback to healthcare personnel or by using patient experience as a quality indicator.

Background: Healthcare institutions deliver essential services that practically everyone needs at least periodically over the course of their lives. Hospital admissions, in particular, place patients in circumstances very foreign to them, with uncertain outcomes often being the case, causing stress for care recipients and their loved ones. Health and medical establishments must be very mindful of this and work toward supplying environments that are as comforting as possible for those in their care.Discussion: One avenue for relieving patients and their loved ones of hardships that complicate already difficult situations involves the development and implementation of Good Samaritan programs. Termed in reference to the biblical Good Samaritan who attended to the physical and emotional needs of his neighbor, these programs supply aid and comfort over and above that which traditionally has been delivered to patients in healthcare delivery settings, fostering satisfaction, positive word-of-mouth communications, and loyalty. Willis-Knighton Health System operates a Good Samaritan program, notably including a patient concierge team, complimentary lodging, and free transportation, with the offering greatly improving the patient experience. This article profiles Willis-Knighton Health System's Good Samaritan program and supplies a blueprint for establishing similar offerings in virtually any healthcare entity.Conclusions: Good Samaritan programs provide significant support and assistance to care recipients and their loved ones at particularly difficult times. Willis-Knighton Health System has observed firsthand the many benefits afforded by its Good Samaritan program, relieving those served by the establishment of many burdens and endearing them to the institution for its associated investments which foster peace of mind. [ABSTRACT FROM AUTHOR]

Background: Many survey studies in health care adjust for demographic characteristics such as age, gender, educational attainment and general health when performing statistical analyses. Whether the effects of these demographic characteristics are consistent between patient groups remains to be determined. This is important as the rationale for adjustment is often that demographic sub-groups differ in their so-called 'response tendency'. This rationale may be less convincing if the effects of response tendencies vary across patient groups. The present paper examines whether the impact of these characteristics on patients' global rating of care varies across patient groups.Methods: Secondary analyses using multi-level regression models were performed on a dataset including 32 different patient groups and 145,578 observations. For each demographic variable, the 95% expected range of case-mix coefficients across patient groups is presented. In addition, we report whether the variance of coefficients for demographic variables across patient groups is significant.Results: Overall, men, elderly, lower educated people and people in good health tend to give higher global ratings. However, these effects varied significantly across patient groups and included the possibility of no effect or an opposite effect in some patient groups.Conclusion: The response tendency attributed to demographic characteristics - such as older respondents being milder, or higher educated respondents being more critical - is not general or universal. As such, the mechanism linking demographic characteristics to survey results on patient experiences with quality of care is more complicated than a general response tendency. It is possible that the response tendency interacts with patient group, but it is also possible that other mechanisms are at play. [ABSTRACT FROM AUTHOR]

Background: People who struggle with mental health problems can provide valuable insight into understanding and improving the coordination of mental health and welfare services. The aims of the study were to explore service users' experiences and perceptions of continuity of care within and across services relevant to personal recovery, to elicit which dimensions of continuity of care are most essential to service users, and to generate ideas for improving service users' experiences of continuity of care.Methods: In the context of a hermeneutic-phenomenological approach, ten service users at a community mental health centre were interviewed about their experiences of continuity of care in and across services. Eight of these were re-interviewed two years later. A collaborative research approach was adopted. Data were analysed by means of a data-driven stepwise approach in line with thematic analysis.Results: Following the analysis five themes representing experiences of continuity of care were developed. Each theme ranged from poor to good experiences of continuity of care: Relationship - from experiencing frequent setbacks and anxiety due to breaks in relationships, to feeling safe in an ongoing personal relationship; Timeliness - from experiencing frustrating waiting times with worsening of problems, to getting help when needed; Mutuality - from having a one-sided struggle, to a situation in which both professionals and service users take initiatives; Choice - from not having the opportunity to make practical arrangements within the context of one's everyday life, to having an array of support options to choose from; Knowledge - from feeling confused and insecure because one does not know what is happening, to feeling safe because one is informed about what is going to happen. Participants provided a range of suggestions for improving experiences of continuity of care.Conclusions: A discrepancy between aspects of continuity that are essential for service users and their experiences of actual practice was revealed. The valid evidence generated in the present collaborative study therefore offers knowledge to policy makers, professionals and service users that may be of help in their future efforts in orienting primary care, mental health, addiction and welfare services towards recovery. [ABSTRACT FROM AUTHOR]

Background: Decentralised acute care services have, through the establishment of municipality acute wards (MAWs), been launched in Norway. The aim is to provide treatment for patients who otherwise would need hospitalisation. Currently there is a lack of studies investigating patient experiences in such services. The aims of this study were therefore to a) translate and validate the Picker Patient Experience Questionnaire (PPE-15) in Norwegian, and b) assess patient experiences in decentralised acute care, and potential factors associated with these experiences.Methods: Patients were recruited from five municipal acute wards in southeastern Norway during the period from June 2014 to June 2015. Data on socio-demographics, length of stay and comorbidity (Charlson comorbidity index (CCI)) were collected. Patients completed the Picker Patient Experience Questionnaire (PPE-15) and the EuroQOL 5-dimension, 3-level version. Convergent validity of the PPE-15 was assessed by correlation of items in PPE-15 and the Nordic Patient Experience Questionnaire (NORPEQ). A retest of the PPE-15 was performed in a subgroup of patients approximately 3 weeks after baseline assessment. Test-retest agreement was assessed with Cohens' unweighted Kappa.Results: A total of 479 patients responded, median age 78.0 years and 41.8% men. A total of 68 patients participated in the retest. Testing of convergent validity revealed an overall weak to moderate correlation. Kappa statistics showed from fair to good test-retest agreement. Most problems were related to continuity and transition, while fewest problems were related to respect for patient preferences. A higher Charlson comorbidity score was the only variable that was negatively associated with patient experience.Conclusion: Patients reported problems in several items of the PPE-15 after discharge from decentralised acute wards. The findings from the current study may be helpful for planning ways to improve quality of care, e.g., by providing feedback to healthcare personnel or by using patient experience as a quality indicator. [ABSTRACT FROM AUTHOR]

Background: In-patient suicide prevention is a high priority in many countries, but its practice remains poorly understood. Patients in a suicidal crisis who receive psychiatric care can provide valuable insight into understanding and improving patient safety. The aim of this paper was therefore to summarize the qualitative literature regarding suicidal patients' in-patient care experiences. The following question guided the review: How can we describe suicidal patients' experiences regarding safety during psychiatric in-patient care?Methods: Systematic searches were conducted in the MEDLINE, Academic Search Premier, CINAHL, SOCINDEX and PsycINFO databases, identifying 20 qualitative studies on suicidal patients and their psychiatric in-patient care experiences. These studies were systematically reviewed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, synthesized via thematic analysis and subjected to quality appraisals.Results: Patients described safety as "feeling safe", and three components, i.e., connection, protection and control, were vital to their experiences of safety. Fulfilling these needs was essential to patients recovering from suicidal crises, feeling safe during encounters with health care professionals and feeling safe from suicidal impulses. Unmet needs for connection, protection and control left patients feeling unsafe and increased their suicidal behaviour.Conclusion: Our review addresses the importance of adopting a wider perspective of patient safety than considering safety solely in technical and physical terms. Safety for the suicidal patient is highly dependent on patients' perceptions of their psychological safety and the fulfilment of their needs. The three patient-identified factors mentioned above - connection, protection and control - should be considered an integral part of patient safety practices and should form the basis of future efforts to understand the safety of suicidal patients during psychiatric in-patient 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 Healthcare organisations monitor patient experiences in order to evaluate and improve the quality of care. Because nurses spend a lot of time with patients, they have a major impact on patient experiences. To improve patient experiences of the quality of care, nurses need to know what factors within the nursing work environment are of influence. The main focus of this research was to comprehend the views of Dutch nurses on how their work and their work environment contribute to positive patient experiences. Methods A descriptive qualitative research design was used to collect data. Four focus groups were conducted, one each with 6 or 7 registered nurses in mental health care, hospital care, home care and nursing home care. A total of 26 nurses were recruited through purposeful sampling. The interviews were audiotaped, transcribed and subjected to thematic analysis. Results The nurses mentioned essential elements that they believe would improve patient experiences of the quality of nursing care: clinically competent nurses, collaborative working relationships, autonomous nursing practice, adequate staffing, control over nursing practice, managerial support and patient-centred culture. They also mentioned several inhibiting factors, such as cost-effectiveness policy and transparency goals for external accountability. Nurses feel pressured to increase productivity and report a high administrative workload. They stated that these factors will not improve patient experiences of the quality of nursing care. Conclusions According to participants, a diverse range of elements affect patient experiences of the quality of nursing care. They believe that incorporating these elements into daily nursing practice would result in more positive patient experiences. However, nurses work in a healthcare context in which they have to reconcile cost-efficiency and accountability with their desire to provide nursing care that is based on patient needs and preferences, and they experience a conflict between these two approaches. Nurses must gain autonomy over their own practice in order to improve patient experiences. [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: In countries with gatekeeping and equitable access to general practitioners (GPs), social inequalities in GP-patient interaction could be an important mechanism by which inequalities in access to medical specialists arise. The aim of this study was to investigate whether socioeconomic inequalities in experiences with general practice are associated with socioeconomic inequalities in access to specialist services. Methods: The study included 6,067 participants in the third survey of the Nord-Trøndelag Health Study (HUNT3, 2006–08) who were asked to evaluate their experiences with primary care and their regular general practitioner in Norway. Self-reported data on health status and number of visits to GP and specialist services in the last 12 months were included in the study. Socioeconomic status was measured by education and household income and rescaled to relative index of inequality (RII). Relative risks were calculated using Poisson regression. Results: We found that a majority of patients reported positive experiences with general practice. Low socioeconomic status (SES) and male gender were associated with negative experiences. Patient experiences both directly and indirectly related to referrals were associated with the probability and quantity of specialist utilization: perception of low subjective influence on decisions about choice of medical care was associated with lower probability and quantity of specialist utilization, whereas desire to change the regular GP or to use GPs other than the regular GP and critical evaluations of the GP were associated with higher specialist consultation frequency. However, the level of education-related inequity in access to specialists was not sensitive to adjustment by survey responses. Conclusion: Patient experiences with general practice were associated with the patients’ level of utilization of specialist services. There are socioeconomic inequalities in patient experiences with general practice, however the aspects measured in this study do not explain the observed socioeconomic inequity in access to specialists. [ABSTRACT FROM AUTHOR]

Background: Educational attainment is strongly related to specific health outcomes. The pathway in which individual patient-provider interactions contribute to (re)producing these inequalities has yet to be studied. In this article, the focus is on differences between less and more highly educated patients in their preferences for and experiences with patient-centred care., e.g. shared decision making, receiving understandable explanations and being able to ask questions. Methods: Data are derived from several Consumer Quality-index (CQ-index) studies. The CQ-index is a family of standardized instruments which are used in the Netherlands to measure quality of care from the patient's perspective. Results: The educational level of patients is directly related to the degree of importance patients attribute to specific aspects of patient-centred care. It has a minor influence on the experienced level of shared decision making, but not on experiences regarding other aspects of patient-centred care. Conclusions: All patients regard patient-centred care as important and report positive experiences. However, there is a discrepancy between patient preferences for patient-centred care on one hand and the care received on the other. Less educated patients might receive 'too much', and more highly educated patients 'too little' in the domains of communication, information and shared decision making. [ABSTRACT FROM AUTHOR]

Background: Assessment of patients' views are essential to provide a patient-centred health service and to evaluating quality of care. As no standardized and validated system for measuring patients' experiences in accident and emergency departments existed, we have developed the Consumer Quality index for the accident and emergency department (CQI A&E). Methods: Qualitative research has been undertaken to determine the content validity of the CQI A&E. In order to assess psychometric characteristics an 84-item questionnaire was sent to 653 patients who had attended a large A&E in the Netherlands. Also, fifty importance questions were added to determine relevance of the questions and for future calculations of improvement scores. Exploratory factor analysis was applied to detect the domains of the questionnaire. Results: Survey data of 304 (47%) patients were used for the analysis. The first exploratory factor analysis resulted in three domains based on 13 items: 'Attitude of the healthcare professionals', 'Environment and impression of the A&E' and 'Respect for and explanation to the patient'. The first two had an acceptable internal consistency. The second analysis, included 24 items grouped into 5 domains: 'Attitude of the healthcare professionals', 'Information and explanation', 'Environment of the A&E','Leaving the A&E' and 'General information and rapidity of care'. All factors were internal consistent. According to the patients, the three most important aspects in healthcare performance in the A&E were: trust in the competence of the healthcare professionals, hygiene in the A&E and patients' health care expectations. In general, the highest improvement scores concerned patient information. Conclusions: The Consumer Quality index for the accident and emergency department measures patients' experiences of A&E healthcare performance. Preliminary psychometric characteristics are sufficient to justify further research into reliability and validity. [ABSTRACT FROM AUTHOR]

Background: Due to the growing population of older people across the world, providing safe and effective care is an increasing concern. Older persons in need for hospitalisation often have, or are susceptible to develop, cognitive impairment. Hospitals need to adapt to ensure high-quality care for this vulnerable patient group. Several age-friendly frameworks and models aiming at reducing risks and complications have been promoted. However, care for older people must be based on the persons' reported needs, and relatives are often an important part of older persons' social support. The primary aim of this study was to explore older peoples' and their relatives' experiences of acute hospitalisation and determine what is important for them to experience a good hospital stay. The study was not limited to patients with cognitive impairment; but included a wider group of older individuals vulnerable to developing delirium, with or without an underlying chronic cognitive impairment.Methods: This study had a qualitative research design in which people aged 75 years or older and their relatives were interviewed during an acute hospitalisation. The study was conducted at two medical wards at a large university hospital in Norway, and included a total of 60 participants. All interviews were informed by a semi-structured interview guide and were thematically analysed.Results: Four major themes were identified in the older people's and the relatives' descriptions of how they experienced the hospital stay and what was important for them during the hospital stay: being seen and valued as a person, individualised care, patient-adapted communication and information, and collaboration with relatives. The themes span both positive and negative experiences, reflecting great variability in the experiences described. The presence of these four characteristics promoted positive experiences among patients and relatives, whereas the absence or negative valuation of them promoted negative experiences.Conclusions: The findings underscore the interrelatedness of older people and their relatives and that patients and relatives are quite consistent in their experiences and opinions. This suggests that listening to the concerns of relatives is important, as they can voice the older patient's needs and concerns in situations where older people might find it difficult to do so. Furthermore, the results underscore how 'small things' matter in relation to how health professionals capture the patient's individual values, need for care, information and involvement of relatives and that these are essential to ensure predictability and security and a good stay for older people and their relatives. [ABSTRACT FROM AUTHOR]

Background: Patient experience with primary health care services can vary markedly between different types of health care facilities, even within the same country setting. Given known benefits of high quality primary health care, the performance of these facilities may significantly impact population health. The aim of this study was to compare the quality of primary care in different types of health facilities as experienced by Vietnamese consumers.Methods: 1662 people who utilized primary health care services at least once over the past two years in various types of facilities in central Vietnam were surveyed in a cross-sectional study using the Vietnamese version of the Primary Care Assessment Tool (VN PCAT-AE) to assess overall primary care quality as well as several different domains of high quality primary care services.Results: Commune health centers were associated with the highest overall primary care quality (PCAT expanded score 21.07, p < 0.001) as well as high scores in nearly all individual domains of primary care quality experienced by consumers compared with other types of facilities. Conversely, private facilities such as private clinics and pharmacies were rated lowest overall (PCAT expanded score 18.45, p < 0.05 and 16.90, p < 0.001 respectively). District hospitals and other government hospitals (PCAT expanded score 20.10 and 19.72 respectively) were reported as the best quality in comprehensiveness of available services (p < 0.001). Polyclinics performed quite well in comprehensiveness of services available (3.11) and first contact-access (2.79) but less so in other domains, especially in cultural competency (1.87).Conclusions: The high quality of primary care services experienced by consumers in commune health centers compared with other facilities gives Vietnam ample reason to promote greater use of these community-based primary care facilities. Populations may benefit most from building and strengthening grassroots networks of such community-based health centers as an effective solution for overcrowding at hospitals while simultaneously providing better overall health outcomes. [ABSTRACT FROM AUTHOR]