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1.	Alijanzadeh, Mehran, et al. (författare) Sleep hygiene behaviours mediate the association between health/e-health literacy and mental wellbeing 2023 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 26:6, s. 2349-2360 Tidskriftsartikel (refereegranskat)abstract BackgroundHealth literacy and e-health literacy are important factors helping people shape awareness of health behaviours in different aspects, including sleep hygiene behaviours. Good sleep hygiene behaviours promote sleep quality and are beneficial to overall mental wellbeing.ObjectiveWe aimed to examine if sleep hygiene behaviours may mediate the association between health literacy/e-health literacy and mental wellbeing.MethodsAdult Iranian subjects (n = 9775; mean [SD] age = 36.44 [11.97] years; 67.3% females) completed the Health Literacy Instrument for Adults, eHealth Literacy Scale, three items on sleep hygiene behaviour that have been used in prior research and the Short Warwick Edinburgh Mental Wellbeing Scale. Data were then subjected to structural equation modelling (SEM) including 500 bootstrapping resampling to examine whether sleep hygiene is a mediator in the relationship between health literacy/e-health literacy and mental wellbeing.FindingsBoth health literacy and e-health literacy were significantly associated with mental wellbeing (r = .63 for health literacy and .39 for e-health literacy; p < .001) and sleep hygiene behaviours (r = .58 for health literacy and .36 for e-health literacy; p < .001). Sleep hygiene behaviours were significantly associated with mental wellbeing (r = .42; p < .001). Moreover, SEM that incorporated bootstrapping approaches indicated that sleep hygiene behaviours were significant mediators in the association between health literacy/e-health literacy and mental wellbeing.ConclusionsWe conclude that health literacy and e-health literacy are associated with mental health wellbeing in the Iranian population. Additionally, the association could be mediated via sleep hygiene behaviours.Patient or Public ContributionThe study was co-designed with healthcare providers from the vice-Chancellor's Office for Health Affairs of Qazvin University of Medical Sciences as equal partners. Moreover, the women's health volunteers were involved in the design of the study.
2.	Arnetz, Judith E., et al. (författare) Is patient involvement during hospitalization for acute myocardial infarction associated with post-discharge treatment outcome? : an exploratory study 2010 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 13:3, s. 298-311 Tidskriftsartikel (refereegranskat)abstract Objective To investigate whether patient involvement during hospitalization for acute myocardial infarction (MI) was associated with health and behavioural outcomes 6–10 weeks after hospital discharge. Background Patient involvement has been associated with improved health outcomes in chronic disease, but less research has focused on the effects of patient involvement in acute conditions, such as MI. Design Self-administered questionnaire study. Questionnaire results were run against medical outcome data in a national database of cardiac patients. Setting and participants Cardiac patients (n = 591) on their first follow-up visit after hospitalization for MI at 11 Swedish hospitals. Main outcome measures Patient ratings of three questionnaire scales related to involvement; cardiovascular symptoms, medication compliance, participation in cardiac rehabilitation, and achievement of secondary preventive goals. Results More positive patient ratings of involvement were significantly associated with fewer cardiovascular symptoms 6–10 weeks after hospital discharge. In contrast, patients who attended cardiac rehabilitation and achieved the goals for smoking cessation and systolic blood pressure were significantly less satisfied with their involvement. No association was found between involvement ratings and medication compliance. Conclusion This study represents a first attempt to examine associations between patient involvement in the acute phase of illness and short-term health outcomes. Some significant associations between involvement and health and behavioural outcomes after acute MI were found. However, higher involvement ratings were not consistently associated with more desirable outcomes, and involvement during hospitalization was not associated with MI patient health and behaviour 6–10 weeks after hospital discharge to the extent hypothesized.
3.	Battista, Simone, et al. (författare) Giving an account of patients' experience: A qualitative study on the care process of hip and knee osteoarthritis 2022 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 1140-1156 Tidskriftsartikel (refereegranskat)abstract Introduction: Despite the publication of clinical practice guidelines, the quality of the care process as experienced by patients with osteoarthritis (OA) appears suboptimal. Hence, this study investigates how patients with OA experience their disease and care process, highlighting potential elements that can enhance or spoil it, to optimise their quality of care. Methods: A qualitative study based on semi-structured interviews. Patients with hip and knee OA in Italy were interviewed. The interview guide was created by a pool of health professionals and patients. The interviews were analysed through a theme-based analysis following a philosophy of descriptive phenomenological research. Results: Our analysis revealed seven main themes: (1) Experiencing a sense of uncertainty, as interviewees perceived treatment choices not to be based on medical evidence; (2) Establishing challenging relationships with the self and the other, as they did not feel understood and felt ashamed or hopeless about their condition; (3) Being stuck in one's own or the health professionals' beliefs about the disease management, as a common thought was the perception of movement as something dangerous together with a frequent prescription of passive therapies; (4) Dealing with one's own attitudes towards the disease; Understanding (5) the barriers to and (6) the facilitators of the adherence to therapeutic exercise, which revolve around the therapy cost, the time needed and the patients' willingness to change their life habits and (7) Developing an uneasy relationship with food since the diet was considered as something that “you force yourself to follow” and overeating as a way “to eat your feelings”. Conclusion: The lack of clear explanations and a negative attitude towards first-line nonsurgical treatments (mainly physical exercise), which are considered as a way to fill the time while waiting for surgery, underlines the importance of providing patients with adequate information about OA treatments and to better explain the role of first-line intervention in the care of OA. This will enhance patient-centred and shared decision-making treatments. Patient Contribution: Patients with hip and knee OA participated in creating the interview and contributed with their experience of their care process.
4.	Bejerholm, Ulrika, et al. (författare) Implementation of the Recovery Guide in inpatient mental health services in Sweden-A process evaluation study 2022 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:4, s. 1405-1417 Tidskriftsartikel (refereegranskat)abstract Background: Involving service users in inpatient care and recovery planning has gained interest worldwide. Our purpose was to evaluate the process of implementation of a coproduced Recovery Guide (RG) intervention in 22 inpatient wards in Sweden, in terms of context, implementation process and mechanisms of impact over 12 months.Methods: A mixed method design and a process evaluation framework were used to guide data collection and to deductively analyze perspectives and descriptive statistics of delivery from three stakeholder groups.Results: Results showed that although initial contextual barriers were present (e.g., lack of resources, and interest, uncertainty in the organization, a dominant illness perspective), it was possible to implement the RG in 14 wards, where 53% of admitted service users received the intervention. Legitimacy of the intervention, engaged managers and staff, capacity of staff and ward organization, coproduction and continuous support from user organization were critical mediators. Mechanisms of impact concerned (1) a new perspective on mental health, well-being and recovery, (2) capacity building of a recovery approach in inpatient settings and (3) a meaningful outlet for users' thoughts and feelings on recovery, sharing narratives and influencing care and goals.Conclusions: The RG intervention has the potential to promote a recovery approach in inpatient mental health services (MHSs). Coproduction among stakeholders created trust and a sustainable implementation that made it possible for wards to resume implementation when contextual barriers had been resolved.Patient and public contribution: The current study involved stakeholders including a service user organization, the public, first-line managers and staff (including peer support workers) in inpatient and community MHS and researchers, who greatly contributed to the implementation programme, including codesign of the RG intervention as well as coproduction of the implementation in inpatient MHS. All authors have their own lived experiences of mental health problems as a service user or as a relative.
5.	Bergerum, Carolina, 1967-, et al. (författare) How might patient involvement in healthcare quality improvement efforts work—A realist literature review 2019 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 00:00, s. 1-13 Tidskriftsartikel (refereegranskat)abstract Introduction This realist literature review, regarding active patient involvement in healthcare quality improvement (QI), seeks to identify possible mechanisms that contribute to success or failure. Furthermore, the paper outlines key considerations for organising and supporting patient involvement in healthcare QI efforts. Methods Two literature searches were performed. Altogether, 1,204 articles from a healthcare context were screened, focusing on improvement efforts that involve patients, healthcare professionals and/or managers and leaders. Among these, 107 articles fulfilled the chosen study selection criteria and were further analysed. 18 articles underwent a full realist review. In the realist synthesis, context-mechanism-outcome configurations were articulated as middle-range theories and organised thematically to generate a program theory on how active patient involvement in QI efforts might work. Results The articles exhibited a diversity of patient involvement approaches at different levels of healthcare organisations. To be successful, organisations’ support of QI efforts that actively involved patients tailored the QI efforts to their context to achieve the desired outcomes, and involved the relevant microsystem members. Furthermore, it promoted interaction and partnership within the microsystem, and supported the behavioural change that follows.Conclusion This realist synthesis generates a program theory for active patient involvement in QI efforts; active patient involvement can be a tool (resource), if tailored for interaction and partnership (reasoning), that leads to behaviour change (outcome) within healthcare QI efforts. The theory explains essential resource and reasoning mechanisms, and outcomes that together form guidance for healthcare organisations when managing active patient involvement in QI efforts.
6.	Bixo, Liv, et al. (författare) 'Sick and tired' : Patients reported reasons for not participating in clinical psychiatric research 2021 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 24:S1, s. 20-29 Tidskriftsartikel (refereegranskat)abstract Background: Meaningful and generalizable research depends on patients' willingness to participate. Studies often fail to reach satisfactory representativeness.Objective: This paper aims to investigate reasons for not participating in research among young adult patients with psychiatric illness.Method: A quantitative cross-sectional study was performed based on questionnaires reported on by 51 psychiatric patients (14 males, 35 females and two unspecified) who had previously declined participation in an ongoing research project. Thereafter, a qualitative interview with subsequent content analysis was conducted with ten additional patients (five males, five females).Results: The questionnaires indicate being 'too tired/too sick to participate' as the most common barrier. Lack of time and fear of needles were other common barriers. Lack of trust or belief in the value of research was less inhibitive. In the interviews, disabling psychiatric symptoms were confirmed as the main reason for not participating. Several potential ways to increase participation were identified, such as simplification of procedures and information as well as providing rewards and feedback, and building relationships before asking.Conclusion: This study is unusual as it focuses on the group of young people attending psychiatry outpatient clinics we know very little about - those who do not partake in research. Our results indicate that fatigue and sickness reduce research participation and identify factors that may facilitate enrolment of this important group.
7.	Blomberg, Karin, 1970-, et al. (författare) Experiences of human papillomavirus self-sampling by women >60 years old : A qualitative study 2023 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 26:2, s. 567-940 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Human papillomavirus (HPV) self-sampling has shown to be acceptable and feasible across cultures and effective in reaching women who do not participate in regular cervical cancer screening. However, most of these studies have included younger women. There is a lack of knowledge of how older women reason about HPV self-sampling.OBJECTIVE: The aim of this study was to describe how women (>60 years old) experience the offering of self-sampling of HPV, compared to having a sample collected by a healthcare professional.DESIGN AND PARTICIPANTS: The study had a qualitative explorative design. Four focus group discussions were conducted with women 60-69 years old (n = 22). Data were analysed using principles of interpretive description.RESULTS: Five themes were identified: self-sampling-convenient and without pain, lack of knowledge, worries related to HPV self-sampling, need for information and taking a societal perspective.CONCLUSION: Women aged >60 years found that HPV self-sampling was convenient and easy to perform. Further, they stressed the importance of being able to remain in the screening programme in advanced age and that self-sampling could be a possible solution. This study also revealed a lack of knowledge among women in this age group regarding HPV infection, how the disease is transmitted and its relation to cervical cancer.PUBLIC CONTRIBUTION: Women who had performed HPV self-sampling participated in the focus group discussion.
8.	Britten, Nicky, et al. (författare) Elaboration of the Gothenburg model of person-centred care 2017 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 20:3, s. 407-418 Tidskriftsartikel (refereegranskat)abstract Background Person-centred care (PCC) is increasingly advocated asa new way of delivering health care, but there is little evidence that itis widely practised. The University of Gothenburg Centre for Person-Centred Care (GPCC) was set up in 2010 to develop and implementperson-centred care in clinical practice on the basis of three routines.These routines are based on eliciting the patient’s narrative to initiatea partnership; working the partnership to achieve commonly agreedgoals; and using documentation to safeguard the partnership andrecord the person’s narrative and shared goals.Objective In this paper, we aimed to explore professionals’ under-standing of PCC routines as they implement the GPCC model in arange of diﬀerent settings.Methods We conducted a qualitative study and interviewed 18 clini-cian-researchers from ﬁve health-care professions who were workingin seven diverse GPCC projects.Results Interviewees’ accounts of PCC emphasized the ways inwhich persons are seen as diﬀerent from patients; the varia bleemphasis placed on the person’s goals; and the role of the person’sown resources in building partnerships.Conclusion This study illustrates what is needed for health-care pro-fessionals to implement PCC in everyday practice: the recognition ofthe person is as important as the speciﬁc practical routines. Intervie-wees described the need to change the clinical mindset and to developthe ways of integrating people’s narratives with clinical practice.
9.	Broqvist, Mari, 1958-, et al. (författare) To accept, or not to accept, that is the question : citizen reactions to rationing 2014 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 17:1, s. 82-92 Tidskriftsartikel (refereegranskat)abstract Background The publicly financed health service in Sweden has come under increasing pressure, forcing policy makers to consider restrictions. Objective To describe different perceptions of rationing, in particular, what citizens themselves believe influences their acceptance of having to stand aside for others in a public health service. Design Qualitative interviews, analysed by phenomenography, describing perceptions by different categories. Setting and participants Purposeful sample of 14 Swedish citizens, based on demographic criteria and attitudes towards allocation in health care. Results Participants expressed high awareness of limitations in public resources and the necessity of rationing. Acceptance of rationing could increase or decrease, depending on one's (i) awareness that healthcare resources are limited, (ii) endorsement of universal health care, (iii) knowledge and acceptance of the principles guiding rationing and (iv) knowledge about alternatives to public health services. Conclusions This study suggests that decision makers should be more explicit in describing the dilemma of resource limitations in a publicly funded healthcare system. Openness enables citizens to gain the insight to make informed decisions, i.e. to use public services or to 'opt out' of the public sector solution if they consider rationing decisions unacceptable.
10.	Carlén, Kristina, et al. (författare) An intervention of sustainable weight change : Influence of self-help group and expectations 2021 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 24:4, s. 1498-1503 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Obesity is one of the most challenging public health problems in Western societies. Group activities are a way to empower individuals to make sustainable lifestyle changes. Self-help groups enable individuals to share expectations and experiences on an equal basis.OBJECTIVE: The aim was to find a model for sustainable weight reduction for people with obesity and to evaluate the importance of expectations before entering the weight reduction programme.METHODS: Persons with a BMI >30 and aged over 30 years were recruited. Weekly seminars for 6 months with discussions concerning physical activity, eating habits and how to change one's lifestyle occurred. After the seminars, a self-help group was initiated. The participants were encouraged to express their expectations before each step in the study.RESULTS: Our findings showed that those who had joined a self-help group had reduced their weight significantly (-6.0 kg) compared with those who had not (-1.4 kg). Further, those who expressed a more mature expectation of the coming change in behaviour towards a healthy lifestyle showed slightly larger weight reduction (-6.1 kg) than those who expressed low expectations (-3.7 kg).PATIENT OR PUBLIC CONTRIBUTION: Participants expressed their thoughts and views, which were considered and included in the programme.CONCLUSIONS: Our findings indicate that the self-help group can be an essential part of a weight reduction programme. The self-help group is a novel strategy to strengthen sustainability in reducing weight. The study also highlights the importance of identifying behaviour change expectations before participating in a programme.
11.	Cederberg, Matilda, et al. (författare) The interactive work of narrative elicitation in person-centred care: Analysis of phone conversations between health care professionals and patients with common mental disorders 2022 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 971-983 Tidskriftsartikel (refereegranskat)abstract Introduction Narratives play a central part in person-centred care (PCC) as a communicative means of attending to patients' experiences. The present study sets out to explore what activities are performed and what challenges participants face in the interactive process of narrative elicitation, carried through in patient-professional communication in a remote intervention based on PCC. Methods Data were gathered from a randomized controlled trial (RCT) in a Swedish city where health care professionals (HCPs) conducted remote PCC for patients on sick leave due to common mental disorders. A sample of eleven audio-recorded phone conversations between HCPs and patients enroled in the RCT were collected and subjected to conversation analysis. Results Three interactive patterns in narrative elicitation were identified: Completed narrative sequences driven by the patient, question-driven narrative sequences guided by the HCP, and narrative sequences driven as a collaborative project between the patient and the HCP. In the question-driven narrative sequences, communication was problematic for both participants and they did not accomplish a narrative. In the other two patterns, narratives were accomplished but through various collaborative processes. Conclusion This study provides insight into what challenges narrative elicitation may bring in the context of a remote PCC intervention and what interactive work patients and HCP need to engage in. Importantly, it also highlights tensions in the ethics of PCC and its operationalization, if the pursuit of a narrative is not properly balanced against the respect for patients' integrity and personal preferences. Our findings also show that narrative elicitation may represent an interactive process in PCC in which illness narratives are jointly produced, negotiated and transformed. Patient or Public Contribution Stakeholders, including patient representatives, were involved in the design of the main study (the RCT). They have been involved in discussions on research questions and dissemination throughout the study period. They have not been involved in conducting the present study.
12.	Charise, A, et al. (författare) Questioning Context: A set of interdisciplinary questions for investigating contextual factors affecting health decision-making 2011 Ingår i: Health Expectations. - : Wiley. - 1369-7625 .- 1369-6513. ; 14:2, s. 115-132 Tidskriftsartikel (refereegranskat)abstract Objective: To combine insights from multiple disciplines into a set of questions that can be used to investigate contextual factors affecting health decision making.Background: Decision-making processes and outcomes may be shaped by a range of non-medical or contextual factors particular to an individual including social, economic, political, geographical and institutional conditions. Research concerning contextual factors occurs across many disciplines and theoretical domains, but few conceptual tools have attempted to integrate and translate this wide ranging research for health decision-making purposes.Methods: To formulate this tool we employed an iterative, collaborative process of scenario development and question generation. Five hypothetical health decision-making scenarios (preventative, screening, curative, supportive and palliative) were developed and used to generate a set of exploratory questions that aim to highlight potential contextual factors across a range of health decisions. Findings: We present an exploratory tool consisting of questions organized into four thematic domains – Bodies, Technologies, Place and Work (BTPW) – articulating wide-ranging contextual factors relevant to health decision making. The BTPW tool encompasseshealth-related scholarship and research from a range of disciplines pertinent to health decision making, and identifies concrete points of intersection between its four thematic domains. Examples of the practical application of the questions are also provided.
13.	Charise, Andrea, et al. (författare) Questioning Context: A set of interdisciplinary questions for investigating contextual factors affecting health decision-making". 2010 Ingår i: Health Expectations. - 1369-7625 .- 1369-6513. ; 14:2, s. 115-132 Tidskriftsartikel (refereegranskat)abstract Objective. To combine insights from multiple disciplines into a set ofquestions that can be used to investigate contextual factors affectinghealth decision making.Background. Decision-making processes and outcomes may be shaped by a range of non-medical or contextual factors particular to an individual including social, economic, political, geographical and institutional conditions. Research concerning contextual factors occurs across many disciplines and theoretical domains, but few conceptual tools have attempted to integrate and translate this wide ranging research for health decision-making purposes.Methods. To formulate this tool we employed an iterative, collaborative process of scenario development and question generation. Five hypothetical health decision-making scenarios (preventative, screening, curative, supportive and palliative) were developed and used to generate a set of exploratory questions that aim to highlight potential contextual factors across a range of health decisions. Findings. We present an exploratory tool consisting of questions organized into four thematic domains – Bodies, Technologies, Place and Work (BTPW) – articulating wide-ranging contextual factors relevant to health decision making. The BTPW tool encompasseshealth-related scholarship and research from a range of disciplines pertinent to health decision making, and identifies concrete points of intersection between its four thematic domains. Examples of the practical application of the questions are also provided.Conclusions. These exploratory questions provide an interdisciplinary toolkit for identifying the complex contextual factors affecting decision making. The set of questions comprised by the BTPW tool may be applied wholly or partially in the context of clinical practice, policy development and health-related research.
14.	Dada, Shakila, et al. (författare) The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials 2022 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 1004-1015 Tidskriftsartikel (refereegranskat)abstract Introduction: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well-planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects.Method: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities.Results: Six youth aged 19–34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision-makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum.Conclusion: The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID-19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision-makers and partners.Patient or Public Contribution: This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript.
15.	Daly, D., et al. (författare) Stop, think, reflect, realize-first-time mothers' views on taking part in longitudinal maternal health research 2019 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 22:3, s. 415-425 Tidskriftsartikel (refereegranskat)abstract Background Longitudinal cohort studies gather large amounts of data over time, often without direct benefit to participants. A positive experience may encourage retention in the study, and participants may benefit in unanticipated ways. Objective To explore first-time mothers' experiences of taking part in a longitudinal cohort study and completing self-administered surveys during pregnancy and at 3, 6, 9 and 12 months' postpartum. Design Content analysis of comments written by participants in the Maternal health And Maternal Morbidity in Ireland study's five self-completion surveys, a multisite cohort study exploring women's health and health problems during and after pregnancy. This paper focuses on what women wrote about taking part in the research. Ethical approval was granted by the site hospitals and university. Setting and participants A total of 2174 women were recruited from two maternity hospitals in Ireland between 2012 and 2015. Findings A total of 1000 comments were made in the five surveys. Antenatally, barriers related to surveys being long and questions being intimate. Postpartum, barriers related to being busy with life as first-time mothers. Benefits gained included gaining access to information, taking time to reflect, stopping to think and being prompted to seek help. Survey questions alone were described as valuable sources of information. Discussion and conclusions Findings suggest that survey research can "give back" to women by being a source of information and a trigger to seek professional help, even while asking sensitive questions. Understanding this can help researchers construct surveys to maximize benefits, real and potential, for participants.
16.	De Sola, Helena, et al. (författare) Living with opioids : A qualitative study with patients with chronic low back pain 2020 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 23:5, s. 1118-1128 Tidskriftsartikel (refereegranskat)abstract Background: Opioids are one of the most prescribed treatments for chronic pain (CP). However, their long‐term use (>3 months) has been surrounded by controversy, due to loss of beneficial effects.Objective: To explore the experiences of people with chronic non‐malignant low back pain in Spain undergoing long‐term treatment with opioids.Design: Qualitative study.Setting and participants: We conducted 15 semi‐structured interviews at the Pain Clinic with persons taking opioid treatment.Methods: The interviews were analysed by qualitative content analysis as described by Graneheim and Lundman, and developed categories and themes discussed in light of a biomedicalization framework.Main results: We developed one overarching theme—Living with opioids: dependence and autonomy while seeking relief —and three categories: The long pathway to opioids due to the invisibility of pain; Opioids: from blind date to a long‐term relationship ; and What opioids cannot fix .Discussion: The long and difficult road to find effective treatments was a fundamental part of coping with pain, involving long‐term relationships with the health system. This study reflects the benefits, and drawbacks of opioids, along with struggles to maintain autonomy and make decisions while undergoing long‐term treatment with opioids. The paper also highlights the consequences of pain in the economy, family and social life of patients.Conclusions: Patients' experiences should be considered to a greater extent by health‐care professionals when giving information about opioids and setting treatment goals. Greater consideration of the social determinants of health that affect CP experiences might lead to more effective solutions to CP.
17.	Diaz, A, et al. (författare) Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project 2021 Ingår i: Health expectations : an international journal of public participation in health care and health policy. - : Wiley. - 1369-7625. ; 24:3, s. 757-765 Tidskriftsartikel (refereegranskat)
18.	Doering, N, et al. (författare) The use of publicly available quality information when choosing a hospital or health-care provider: the role of the GP 2015 Ingår i: Health expectations : an international journal of public participation in health care and health policy. - : Wiley. - 1369-7625. ; 18:6, s. 2174-2182 Tidskriftsartikel (refereegranskat)
19.	Dubois, Hanna, et al. (författare) Patient participation in gastrointestinal endoscopy : From patients' perspectives 2020 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 23:4, s. 893-903 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Patient participation is associated with satisfaction and improved health-related outcomes. In gastrointestinal endoscopy, patient participation is an underexplored area.OBJECTIVE: To gain understanding on patients' experiences, attitudes and preferences concerning patient participation in the endoscopy pathway.METHODS: Semi-structured interviews with endoscopy patients (n = 17, female n = 8, male n = 9, ages 19-80 years) were performed. Interview transcripts were analysed using qualitative content analysis. Participants were recruited by purposive sampling from an endoscopy unit in a Swedish university hospital. Inclusion:≥ 18 years, fluency in Swedish and recent experience of endoscopy at the unit.RESULTS: Five generic categories emerged, two within the area of the patient's role, which was described as active or passive/included or excluded. Another three generic categories related to factors, critical to active participation, including organizational aspects, impressions of staff and individual circumstances were identified. In this context, patient participation described in the interviews was on a low to basic level, although sometimes reaching a higher level when staff 'invited' patients in decision making.DISCUSSION: This study contributes to the understanding of patient participation in endoscopy. Patients are in an inferior position and need support from the staff for an active role in their care. Although there were variations on the perceived importance of different factors, a heavy responsibility lies on the endoscopy staff to acknowledge the patients' individual needs and to facilitate patient participation.CONCLUSIONS: Endoscopy staff has a key role in supporting patient participation. In endoscopy settings, patient participation is vulnerable to multiple factors.
20.	Eldh, Ann Catrine, et al. (författare) Considering patient non-participation in health care 2008 Ingår i: Health Expectations. - : Wiley. - 1369-7625 .- 1369-6513. ; 11:3, s. 263-71 Tidskriftsartikel (refereegranskat)abstract OBJECTIVE: The aim of this study was to depict patient non-participation as described by a diverse group with recent experiences of being patients. BACKGROUND: Patient participation is regarded as a primary condition for optimal quality of care, suggesting that non-participation should be avoided. A common understanding of the concept of patient non-participation is needed. A discrepancy in definitions of patient non-participation has been found in health-care interactions, health-care classifications and health-care research, and little is known of what patient non-participation represents to patients. STUDY DESIGN: A survey consisting of closed-ended and open-ended questions was administered to persons that had recently been patients to gather respondents' descriptions of what they considered as patient non-participation. Qualitative content analysis was used to analyse free-text descriptions, and descriptive statistics were used for the close-ended alternatives. FINDINGS: Lacking information (e.g. not being provided with appropriate information) and lacking recognition (e.g. not being listened to and/or lacking recognition as an individual with individual needs and concerns) were significant aspects of patient non-participation. Furthermore, non-participation encompassed facing organization-centred, as opposed to patient-centred, health care as well as feeling insecure in health care interactions. CONCLUSION: The findings provide input for a better understanding of what patients experience as non-participation. Organising for the caregivers to be able to thoroughly listen to the patients' illness narratives would easily reduce the risk of patient's experiencing what is described as non-participation and would provide a sound base for patient learning needs.
21.	Eldh, Ann Catrine, 1965-, et al. (författare) The development and initial validation of a clinical tool for patients' preferences on patient participation : The 4Ps 2015 Ingår i: Health Expectations. - : Wiley-Blackwell. - 1369-6513 .- 1369-7625. ; 18:6, s. 2522-2535 Tidskriftsartikel (refereegranskat)abstract Aims: To report on the development and initial testing of a clinical tool, The Patient Preferences for Patient Participation tool (The 4Ps), which will allow patients to depict, prioritize, and evaluate their participation in health care.Background: While patient participation is vital for high quality health care, a common definition incorporating all stakeholders' experience is pending. In order to support participation in health care, a tool for determining patients' preferences on participation is proposed, including opportunities to evaluate participation while considering patient preferences.Methods: Exploratory mixed methods studies informed the development of the tool, and descriptive design guided its initial testing. The 4Ps tool was tested with 21 Swedish researcher experts (REs) and patient experts (PEs) with experience of patient participation. Individual Think Aloud interviews were employed to capture experiences of content, response process, and acceptability.Results: 'The 4Ps' included three sections for the patient to depict, prioritize, and evaluate participation using 12 items corresponding to 'Having Dialogue', 'Sharing Knowledge', 'Planning', and 'Managing Self-care'. The REs and PEs considered 'The 4Ps' comprehensible, and that all items corresponded to the concept of patient participation. The tool was perceived to facilitate patient participation whilst requiring amendments to content and layout.Conclusions: A tool like The 4Ps provides opportunities for patients to depict participation, and thus supports communication and collaboration. Further patient evaluation is needed to understand the conditions for patient participation. While The 4Ps is promising, revision and testing in clinical practice is required.
22.	Feldthusen, Caroline, 1977, et al. (författare) Centredness in health care: A systematic overview of reviews 2022 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 885-901 Tidskriftsartikel (refereegranskat)abstract Introduction The introduction of effective, evidence-based approaches to centredness in health care is hindered by the fact that research results are not easily accessible. This is partly due to the large volume of publications available and because the field is closely linked to and in some ways encompasses adjoining fields of research, for example, shared decision making and narrative medicine. In an attempt to survey the field of centredness in health care, a systematic overview of reviews was conducted with the purpose of illuminating how centredness in health care is presented in current reviews. Methods Searches for relevant reviews were conducted in the databases PubMed, Scopus, Cinahl, PsychINFO, Web of Science and EMBASE using terms connected to centredness in health care. Filters specific to review studies of all types and for inclusion of only English language results as well as a time frame of January 2017-December 2018, were applied. Results The search strategy identified 3697 unique reviews, of which 31 were included in the study. The synthesis of the results from the 31 reviews identified three interrelated main themes: Attributes of centredness (what centredness is), Translation from theory into practice (how centredness is done) and Evaluation of effects (possible ways of measuring effects of centredness). Three main attributes of centeredness found were: being unique, being heard and shared responsibility. Aspects involved in translating theory into practice were sufficient prerequisites, strategies for action and tools used in safeguarding practice. Further, a variety and breadth of measures of effects were found in the included reviews. Conclusions Our synthesis demonstrates that current synthesized research literature on centredness in health care is broad, as it focuses both on explorations of the conceptual basis and the practice, as well as measures of effects. This study provides an understanding of the commonalities identified in the reviews on centredness in healthcare overall, ranging from theory to practice and from practice to evaluation. Patient or Public Contribution Patient representatives were involved during the initiation of the project and in decisions about its focus, although no patient or public representatives made direct contributions to the review process.
23.	Forsgren, Emma, 1982, et al. (författare) Implementation of communication routines facilitating person-centred care in long-term residential care: A pilot study 2022 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:6, s. 2982-2991 Tidskriftsartikel (refereegranskat)abstract Background Specific routines such as the development of personal communication plans can improve the interaction between people with communication disorders and healthcare staff. Objective: This pilot study explores a model for implementing communication routines including personal communication plans in long-term residential care. Design, Setting and Participants This multiple case study includes two residential care facilities that differ in size and the number of languages spoken. Intervention or main variables studied implementation strategies involved workshops, individual coaching and follow-up visits. Main outcome measure implementation was assessed using goal attainment measurements, and the staff's views about facilitators and barriers to implementation were explored through structured interviews using the Theoretical Domains Framework. Results The overall implementation success rate for the facilities was moderate, and one of the facilities showed promising results related to personal communication plans. Both facilities experienced barriers to implementation, including management problems and a lack of reminders. However, the two facilities seem to have different motivations for change. Discussion and Conclusions Regardless of the features of the facility, successful implementation requires stable and committed leadership. Moreover, experiences with language diversity may motivate staff to implement communication routines. Patient or Public Contribution The content of the implementation model used (i.e., choice of specific routines and implementation strategies) was coproduced by staff, managers and the researchers involved in this project. The staff and managers were responsible for the implementation of the new routines under the supervision of the researchers.
24.	Forsgren, Emma, 1982, et al. (författare) Interactional practices in person-centred care: Conversation analysis of nurse-patient disagreement during self-management support 2021 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 24:3, s. 940-950 Tidskriftsartikel (refereegranskat)abstract Background Person-centred care implies a change in interaction between care professionals and patients where patients are not passive recipients but co-producers of care. The interactional practices of person-centred care remain largely unexplored. Objective This study focuses on the analysis of disagreements, which are described as an important part in the co-production of knowledge in interaction. Design A qualitative exploratory study using conversation analysis. Setting and participants Data were collected from a nurse-led person-centred intervention in a hospital outpatient setting. Interactions between adult patients with irritable bowel syndrome (n = 17) and a registered nurse were audio-recorded. COREQ guidelines were applied. Results Disagreements were found after demonstration of the nurse's or patients' respective professional or personal knowledge. Disagreements were also evident when deciding on strategies for self-management. Although negotiations between opposing views of the nurse and patient were seen as important, the patient generally claimed final authority both in knowing how IBS is perceived and in the right to choose self-management strategies. The nurse generally oriented towards patient authority, but instances of demonstration of nurse authority despite patient resistance were also found. Discussion and conclusions This study provides information on how co-production of knowledge and decisions occur in the context of a person-centred care intervention. Negotiations between nurse and patient views require a flexible approach to communication, adapting interaction to each context while bearing in mind the patients having the final authority. To facilitate co-production, the patient's role and responsibilities in interaction should be explicitly stated.
25.	Fredriksson, Mio, 1976- (författare) Patient and public involvement in the build-up of COVID-19 testing in Sweden 2022 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 25:2, s. 541-548 Tidskriftsartikel (refereegranskat)abstract Background Patient and public involvement in healthcare can be particularly challenging during crises such as the COVID-19 pandemic. Objective The aims of the study, which focuses on COVID-19 testing in Sweden, were to explore (1) how, or to what extent, patients and members of the public were involved in decisions about the organization of COVID-19 testing during the first year of pandemic and (2) whether this was seen as feasible or desirable by regional and national stakeholders. Methods A qualitative interview study was conducted with key organizational stakeholders at three national agencies and within three Swedish regions (n = 16). Results There had been no patient and public involvement activities in the area of COVID-19 testing. The regions had, however, tried to respond to demands or critiques from patients and the public along the way and to adapt the services to respond to their preferences. The need for rapid decision-making, the uncertainty about whom to involve, as well as a hesitation about the appropriateness of involving patients and the public contributed to the lack of involvement. Conclusion Future studies on patient and public involvement during crises should address what structures need to be in place to carry out involvement successfully during crises and when to use activities with varying degrees of power or decision-making authority for patients and members of the public. Patient or Public Contribution Fifteen members of the public contributed with short reflections on the study findings.
26.	Fredriksson, Mio, et al. (författare) Regional media coverage influences the public's negative attitudes to policy implementation success in Sweden 2015 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 18:6, s. 2731-2741 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: One central aspect of health literacy is knowledge of patients' rights. Being an important source of information about health and health care, the media may influence health literacy and act as a policy implementer.OBJECTIVE: To investigate whether regional news media coverage in Sweden is linked to (i) the public's awareness and knowledge of a patient's rights policy, the waiting-time guarantee and (ii) the public's attitudes to how the guarantee's time limits are met, that is, implementation success.DESIGN AND DATA: Three types of data are used. First, a national telephone survey of the public's awareness, knowledge and attitudes; second, media coverage information from digital media monitoring; and third, official waiting-time statistics. Bivariate and multivariate regression analyses are performed with the 21 Swedish county councils/regions as a base.RESULTS: In the county councils/regions, non-awareness ranged from 1 to 15% and knowledge from 47 to 67%. There are relatively large differences between population groups. The amount of regional media coverage shows no significant correlation to the level of awareness and knowledge. There is, however, a significant correlation to both positive and negative attitudes; the latter remains after controlling for actual waiting times.DISCUSSION AND CONCLUSIONS: At the national level, the media function as a policy implementer, being the primary source of information. At the regional level, the media are part of the political communication, reporting more extensively in county councils/regions where the population holds negative views towards the achievement in implementing the guarantee. We conclude that Swedish authorities should develop its communication strategies to bridge health literacy inequalities.
27.	Fritzell, Kaisa, et al. (författare) Different information needs—The major reasons for calling the helpline when invited to colorectal cancer screening 2022 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 25:4, s. 1548-1554 Tidskriftsartikel (refereegranskat)abstract Introduction: This study pertains to the design of a decision aid (DA) to shed light on information and support needs in colorectal cancer screening, with the aim to explore the calling patterns to the Screening of Swedish Colons (SCREESCO) study's helpline.Methods: A cross-sectional study was conducted with data from documented telephone calls to the SCREESCO study, including individuals, 59-60 years, randomized to colonoscopy or high sensitive faecal immunochemical test (FIT).Results: More than 2000 calls (women 58.5%; colonoscopy 59%) were analysed. Calling patterns: unsubscribing from screening, confirmation of participation, logistical concerns about the screening procedure, counselling, and FIT screening difficulties or in need of a new FIT test. Comorbidity was the most frequent reason for unsubscribing and most of the counselling calls included questions about the FIT test or the colonoscopy.Conclusion: Most of the calls to the helpline seemed to be related to individuals' lack of understanding about the organization of the screening programme and the screening procedure. Therefore, we find it important to further stress the tailoring part in our DA developing process, that is, provide limited information initially, with the possibility of access to more, if desired by the individual, still with respect to the individual's needs, health and digital literacy.Patient and public contribution: Individuals representing the public and invited to SCREESCO participated since we analysed their calls to the helpline. The findings will contribute to our continued work with the DA where the public will contribute and participate.
28.	Gellerstedt, Linda, et al. (författare) Men's experiences of receiving a prostate cancer diagnosis after opportunistic screening : A qualitative descriptive secondary analysis 2022 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:5, s. 2485-2491 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Prostate cancer is one of the most common types of cancer in men and could occur without symptoms. Screening has been debated but remains controversial and, in most countries, organized population-based screening does not exist. The aim of this study was to describe men's experiences of receiving a prostate cancer diagnosis after opportunistic screening.METHODS: This study is a secondary analysis from interviews with 17 men (aged 56-80 years) who had undergone curative treatment for prostate cancer. Data were collected in an urban region of Sweden through interviews conducted face to face or by telephone. An inductive content analysis was used with Consolidated criteria for Reporting Qualitative research as a reporting checklist.RESULTS: Two main categories were identified. Screening is a lifesaver enclosed by ethical dilemmas reflects how men considered screening as a lifesaving test. Testing was surrounded by injustice and an eagerness to encourage other men to undergo screening. Facing challenges during diagnosis reflects the men's experiences of being in an unknown field yet expected to engage in decision-making concerning appropriate treatment. Receiving the diagnosis rendered mixed emotions about having a cancer disease, that the treatment could cause lifelong symptom distress and the men described being hesitant to talk about their diagnosis.CONCLUSIONS: The findings highlight men's opinions about screening and that the lack of routine screening represents injustice. The men considered this as an ethical question of lifesaving justice, while stakeholders may argue that screening could lead to unnecessary suffering and overtreatment. Men do not always talk openly about their diagnosis, linked to the fact that it concerns intimate areas. It is important to balance the information in relation to shared decision-making regarding treatment. Health care professionals have an ethical responsibility to support and coach the patient in their decision.PATIENT OR PUBLIC CONTRIBUTION: This study was based on interviews with men who had experienced a diagnosis of prostate cancer.
29.	Grandahl, Maria, et al. (författare) Immigrant women's experiences and views on prevention of cervical cancer : A qualitative study 2015 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 18:3, s. 344-354 Tidskriftsartikel (refereegranskat)abstract BackgroundMany Western countries have cervical cancer screening programmes and have implemented nation-wide human papillomavirus (HPV) vaccination programmes for preventing cervical cancer.ObjectiveTo explore immigrant women’s experiences and views on the prevention of cervical cancer, screening, HPV vaccination and condom use.DesignAn exploratory qualitative study. The Health Belief Model (HBM) was used as a theoretical framework.Setting and participantsEight focus group interviews, 5–8 women in each group (average number 6,5), were conducted with 50 women aged 18–54, who studied Swedish for immigrants. Data were analysed by latent content analysis.ResultsFour themes emerged: (i) deprioritization of women’s health in home countries, (ii) positive attitude towards the availability of women’s health care in Sweden, (iii) positive and negative attitudes towards HPV vaccination, and (iv) communication barriers limit health care access. Even though the women were positive to the prevention of cervical cancer, several barriers were identified: difficulties in contacting health care due to language problems, limited knowledge regarding the relation between sexual transmission of HPV and cervical cancer, culturally determined gender roles and the fact that many of the women were not used to regular health check-ups.ConclusionThe women wanted to participate in cervical cancer prevention programmes and would accept HPV vaccination for their daughters, but expressed difficulties in understanding information from health-care providers. Therefore, information needs to be in different languages and provided through different sources. Health-care professionals should also consider immigrant women’s difficulties concerning cultural norms and pay attention to their experiences.
30.	Gustavsson, Catharina, 1961-, et al. (författare) Pain self-management intervention supports successful attainment of self-selected rehabilitation goals-secondary analysis of a randomized controlled trial 2022 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 25:3, s. 1157-1167 Tidskriftsartikel (refereegranskat)abstract OBJECTIVES: (i) Describe patients' self-selected activity-related rehabilitation goals, and (ii) compare attainment of these rehabilitation goals among people with persistent tension-type neck pain receiving a group-based pain and stress self-management intervention (PASS) or individual physiotherapy (IPT).METHODS: Before intervention and random allocation to PASS or IPT, 156 people (PASS n = 77, IPT n = 79), listed three self-selected activity-related rehabilitation goals by use of the Patient Goal Priority Questionnaire (PGPQ). For each activity goal, participants rated limitations in activity performance, self-efficacy and fear of activity performance, readiness to change to improve performance, and expectations of future activity performance. At follow-ups (10 weeks, 20 weeks, 1 year and 2 years after inclusion), participants also responded to a question on changes made to improve activity performance. Mann-Whitney U test was used to evaluate between-group differences.RESULTS: There were between-group differences in favour of PASS in the attainment of self-selected rehabilitation goals with regard to activity limitations and satisfaction with activity performance at all follow-ups.CONCLUSIONS: PASS was more successful than IPT for the attainment of self-selected rehabilitation goals, improvements in activity limitations and satisfaction with activity performance as measured by PGPQ. The PASS programme emphasized the importance of applying active pain- and stress-coping techniques in personal 'risk situations' for pain flare-ups, which appear to support people with persistent tension-type neck pain to make changes in their lives to improve activity performance.PATIENT OR PUBLIC CONTRIBUTION: Patient engagement in rehabilitation by self-selected goals was investigated, but patients were not involved in the design or conduct of the study.
31.	Gyllensten, Hanna, 1979, et al. (författare) A national research centre for the evaluation and implementation of person-centred care: Content from the first interventional studies 2020 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 23:5, s. 1362-1375 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Person-centred care (PCC) has been suggested as a potential means to improve the care of patients with chronic and long-term disorders. In this regard, a model for PCC was developed by the University of Gothenburg Centre for Person-Centred Care (GPCC). OBJECTIVE: The present study aimed to explore the theoretical frameworks, designs, contexts and intervention characteristics in the first 27 interventional studies conducted based on the ethics for person-centredness provided by the GPCC. DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: A questionnaire to the principal investigators of the 27 intervention studies financed by the GPCC and conducted between 2010 and 2016. MAIN OUTCOME MEASURES: Theoretical frameworks, contexts of studies, person-centred ethic, and outcome measures. RESULTS: Most of the interventions were based on the same ethical assumptions for person-centredness but theories and models in applying the interventions differed. All studies were controlled; 12 randomized and 15 quasi-experimental. Hospital in- and outpatient and primary care settings were represented and the outcome measures were related to the specific theories used. A complexity in designing, introducing and evaluating PCC interventions was evident. CONCLUSION: The frameworks, designs and interventions in the studies were in line with the established ethical basis of PCC, whereas outcome measures varied widely. Consensus discussions among researchers in the field are needed to make comparisons between studies feasible. PATIENT OR PUBLIC CONTRIBUTIONS: Patients or the public made no direct contributions, although most of the studied projects included such initiatives.
32.	Heckemann, Birgit, 1969, et al. (författare) The importance of personal documentation for patients living with long-term illness symptoms after pituitary surgery: A Constructivist Grounded Theorystudy. 2023 Ingår i: Health expectations : an international journal of public participation in health care and health policy. - : Wiley. - 1369-7625. ; 26:1, s. 226-236 Tidskriftsartikel (refereegranskat)abstract Despite surgical treatment, pituitary adenomas often cause long-term illness symptoms, that profoundly impact patients' quality of life physically, psychologically and socially. Healthcare professionals often fail to recognize and discuss the ensuing problems. Personal documentation, such as symptom monitoring, reflective writing or even posts on social media, may help this patient group to manage their daily life and support communication of their care needs. Documentation strategies and the role of documentation for people with long-term symptoms after pituitary adenoma surgery are currently unknown.To examine the effects and strategies of documenting symptoms, activities and physical and emotional well-being among people living with long-term pituitary adenoma.In this Constructivist Grounded Theory study, 12 individuals living with long-term illness symptoms after pituitary adenoma surgery described their documentation strategies in in-depth interviews using teleconferencing and photo-elicitation between August and October 2020.Strategies for documentation included analogue and digital media. One core category (Exercising autonomy) and three categories describing processes (Gaining insight, Striving for controland Sharing) emerged from the analysis. These three interrelated processes become an expression of autonomy to manage life and make sense of chronic illness. Personal documentation is a flexible tool that is used more extensively in times of ill health and less in times of relative well-being. Sharing documentation with healthcare professionals facilitated care planning and sharing with friends and family fostered emotional well-being.Personal documentation is a valuable resource for managing life after pituitary adenoma surgery. The current findings may be relevant to other chronic illnesses. Further research exploring potential tools for personal documentation is needed.We deliberately chose a Constructivist Grounded Theory approach for this interview study. Using Constructivist Grounded Theory, we gavepeople living with long-termsymptoms a voice, allowing them to freely speak about managing their illness in connection with personal documentation. The theoretical sampling approach enabled us to invite participants that could provide a broad overview of the landscape of personal documentation.
33.	Hedlund, Åsa (författare) What aspects promote health and well-being among autistic adults and how can they be incorporated into nursing care? A theoretical podcast-based study 2024 Ingår i: Health Expectations. - 1369-6513 .- 1369-7625. Tidskriftsartikel (refereegranskat)abstract Background: Nursing care aims to promote health and well-being among patients, but if nurses are to meet this requirement, they need to know the needs of the individual. Among autistic patients, health and well-being may be promoted using factors other than those used among other groups, indicating that their care needs may also differ. Aim: The aim of the study was to investigate what autistic adults need if they are to experience health and well-being. The aim was also to evaluate how nurses can use this information in nursing care based on the Fundamentals of Care framework. Methods: This was a qualitative-theoretical descriptive study incorporating elements of netnography. Podcasts in which autistic individuals discuss their health and well-being were listened to and qualitatively analyzed to address the first part of the aim. The Fundamentals of Care framework was then used to demonstrate how results from the first part of the aim could be applied in nursing care to meet the care needs of autistic patients.Results: The study reveals that when autistic adults speak freely about their life, they mention interests, pride, being a support to others, satisfying the body’s needs, health-promoting places, being alone, experiencing straightforward communication, receiving support from others and having routines as important to their health and well-being. All of these aspects are relevant to consider when trying to meet autistic patients’ nursing care needs. For example, minimizing sensory impressions and being able to have routines are important to physical well-being.Conclusions: The study reveals that adult autistic individuals may have partly different nursing care needs compared to most patients. Nurses can meet autistic patients’ needs using the Fundamentals of Care framework, adapted to autistic individuals, as a guide.
34.	Holmqvist, Malin, et al. (författare) Older persons’ experiences regarding evaluation of their medication treatment : An interview study in Sweden 2019 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 22:6, s. 1294-1303 Tidskriftsartikel (refereegranskat)abstract Background: Older persons with polypharmacy are at increased risk of harm from medications, and this issue is a global patient safety challenge. Harm may arise at all stages of medication use and may cause hospital admission, additional resource uti ‐lization and lower patient satisfaction. Older persons’ participation in their own care may increase patient safety. Their views on the evaluation of their medication treat ‐ment, and their own involvement in it, are crucial yet poorly understood.Objectives: To identify opportunities to make the medication use process safer, we explored and described older persons’ experiences of evaluation of their medicationtreatment.Design: Semi‐structured interviews were performed with 20 community‐dwelling older persons (age 75‐91 years) in Sweden. Data were analysed using inductive quali ‐tative content analysis.Results: These older persons reported having a responsibility to engage in their med ‐ication evaluations, although some felt unable to do so or considered themselves un ‐concerned. Evaluation, in their experience, was facilitated by continuity of care and an invitation to participate. However, some older persons experienced not receivinga comprehensive medication evaluation.Discussion and conclusion: Older persons want to be actively involved in their medi ‐cation evaluations, and this may represent an underutilized resource in the pursuit of patient safety. Their trust in physicians to undertake evaluations on a regular basis, although that does not necessarily occur, may cause harm. Patient safety could benefit from a co‐production approach to medication evaluations, with health‐care professionals explicitly sharing information with older persons and agreeing on re ‐sponsibilities related to on‐going medication treatment.
35.	Hult, Anna, et al. (författare) Patient representatives : Crucial members of health-care working groups facing an uncertain role and conflicting expectations. A qualitative study 2021 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 24:4, s. 1197-1206 Tidskriftsartikel (refereegranskat)abstract Background Patient representatives (PRs) have been involved for decades in health-care development, and their participation is increasingly sought in health-care working groups (HCWGs) on every level. However, information on how the role could be further developed and teamwork improved remains sparse. Objective To explore the role of patient representatives in clinical practice guideline (CPG) monitoring groups, to describe their contributions and identify possibilities of improvement. Design Qualitative design using semi-structured interviews analysed by content analysis. Setting and participants Interviews were conducted with 11 PRs, 13 registered nurses, and 9 physicians, all members of national committees monitoring CPGs for cancer in Sweden. Results Most participants considered the PR role important but mentioned several problems. PRs' contributions were hampered by uncertainties about their role, the low expectations of other group members and their sense that their contributions were often disregarded. Some professionals questioned whether PRs were truly representative and said some topics could not be discussed with PRs present. Conclusion This study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care. Patient or public contribution PRs were information givers in data collection.
36.	Husdal, Rebecka, et al. (författare) Diabetes care provided by national standards can improve patients' self‐management skills : A qualitative study of how people with type 2 diabetes perceive primary diabetes care 2021 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 24:3, s. 1000-1008 Tidskriftsartikel (refereegranskat)abstract Background The increasing incidence of type 2 diabetes mellitus [T2DM] has resulted in extensive research into the characteristics of successful primary diabetes care. Even if self-management support and continuity are increasingly recognized as important, there is still a need for deeper understanding of how patients' experiences of continuity of care coincide with their needs for self-management and/or self-management support.Objective To gain a deeper understanding of how people with T2DM perceive Swedish primary diabetes care and self-management support.Methods This qualitative study used focus groups as the means for data collection. Participants were identified through a purposive sampling method differing in age, sex, diabetes duration and latest registered glycated haemoglobin level. Twenty-eight participants formed five focus groups. Qualitative content analysis was applied to interview transcripts.Results The main theme emerging from the focus group data was that diabetes care provided by national standards improved self-management skills. Two themes that emerged from the analysis were (a) the importance of a clarification of structures and procedures in primary diabetes care and (b) health-care staff 'being there' and providing support enables trust and co-operation to enhance self-management.Conclusions Individual patients' self-management resources are strengthened if the importance of providing relational continuity, management continuity and informational continuity is considered. Patients also need assistance on 'how' self-management activities should be performed.Patient contribution Prior to the study, one pilot focus group was conducted with patients to obtain their perspectives on the content of the planned focus groups; thus, patients were involved in both planning and conduct of the study.
37.	Inge, Elin, et al. (författare) Ameliorating epistemic injustice in practice : Communication strategies in a research project with refugee youth coresearchers 2023 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 27:1 Tidskriftsartikel (refereegranskat)abstract IntroductionMany researchers want to include seldom involved groups, such as refugees and youth, in patient and public involvement (PPI), but experience a number of barriers. The PPI research community calls for critical evaluations that are prospective, data-based and conducted by researchers and public contributors together. In this study, we conducted a longitudinal evaluation of a core activity in all collaborations: communication strategies. The aim was to evaluate the communication strategies adopted throughout a research project with refugee youth coresearchers.MethodsThis article is based on the evaluation of a project where refugee youth were involved in the online adaptation of a group-based programme for youth with posttraumatic stress. Behavioural observations and field notes collected during the project were analysed with qualitative content analysis and a readability index, and discussed through the lens of epistemic injustice. The article was cowritten by researchers and refugee youth.FindingsFour manifest categories were identified: Facilitating engagement through coplanning and circumstantial flexibility; Different needs require different channels; It's not just about the channel—facilitation skills matter; Finding a common language opens a communicative flow. In addition, a latent underlying theme reflecting the role of trust was identified: Interactive moments facilitate trust—trust facilitates richer involvement.ConclusionAt the core of the identified communication strategies were strengthening relationship-building and actively facilitating involvement. Establishing trusting relationships enabled refugee youth to share input. The communication strategies increased hermeneutical justice by contributing to a common understanding; thus, taking a step towards ameliorating epistemic injustice.
38.	Johnsson, Anette, 1963-, et al. (författare) Striving to establish a care relationship -Mission possible or impossible? : Triad encounters between patients, relatives and nurses 2019 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 22:6, s. 1304-1313 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: When patients, relatives and nurses meet, they form a triad that can ensure a good care relationship. However, hospital environments are often stressful and limited time can negatively affect the care relationship, thus decreasing patient satisfaction.OBJECTIVE: To explain the care relationship in triad encounters between patients, relatives and nurses at a department of medicine for older people.DESIGN: A qualitative explorative study with an ethnographic approach guided by a sociocultural perspective.METHOD: Participatory observations and informal field conversations with patients, relatives and nurses were carried out from October 2015-September 2016 and analysed together with field notes using ethnographic analysis.RESULT: The result identifies a process where patients, relatives and nurses use different strategies for navigating before, during and after a triad encounter. The process is based on the following categories: orienting in time and space, contributing to a care relationship and forming a new point of view.CONCLUSION: The result indicates that nurses, who are aware of the process and understand how to navigate between the different perspectives in triad encounters, can acknowledge both the patient's and relatives' stories, thus facilitating their ability to understand the information provided, ensure a quality care relationship and strengthen the patient's position in the health-care setting, therefore making the mission to establish a care relationship possible.
39.	Karami, Fatemeh, et al. (författare) The challenges of voluntary care provision for hospitalized patients with COVID-19 : A qualitative study of the public volunteers' experiences 2024 Ingår i: Health Expectations. - 1369-6513 .- 1369-7625. ; 27:2 Tidskriftsartikel (refereegranskat)abstract INTRODUCTION: During the COVID-19 pandemic, there was a remarkable increase in public volunteering for the care of hospitalized patients. They faced challenges during their voluntary care provision. This study aimed at exploring public volunteers' experiences of the challenges of the voluntary care provision to hospitalized patients with COVID-19.METHODS: A descriptive qualitative study with an inductive content analysis method was conducted, 2022-2023. Eighteen public volunteers providing care to hospitalized patients with COVID-19 were purposefully selected among 10 hospitals, specialized in COVID-19 care in Tehran and Shiraz, Iran. Data were collected over 7 months through in-depth semistructured interviews and concurrently analyzed using conventional content analysis methods.FINDINGS: The challenges of voluntary care provision to hospitalized patients with COVID-19 were illustrated in five main categories, each with two subcategories. The categories included structural challenges, interpersonal conflicts, financial constraints, covert participation and the deteriorating condition of care provision. The subcategories comprised lack of volunteer recruitment bases, ineffective organization of voluntary activities, pervasive distrust, heightened risk of clinical errors, conflicts between volunteer commitments and primary occupation, lack of financial support, lack of family support, isolation by friends, mental trauma and physical exhaustion.CONCLUSION: Public volunteers encounter diverse challenges while providing care to hospitalized patients with COVID-19, which negatively impacts their motivation to serve. By addressing these challenges, we can create a more supportive environment for volunteers and enhance the quality of care provided to patients during public health emergencies. Identifying such challenges can assist healthcare managers and policymakers develop effective strategies to mitigate mounting difficulties and enhance volunteer services, thereby improving the overall quality of care provided to patients during public health crises.PATIENT CONTRIBUTIONS: Participants were identified and recruited after the study objectives were explained in person to the managers. The participants were approached and interviewed by one author. Participation was voluntary and the participants did not receive any financial compensation for their time.
40.	Kvael, Linda A. H., et al. (författare) Preference-based patient participation in intermediate care : Translation, validation and piloting of the 4Ps in Norway 2024 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 27:1 Tidskriftsartikel (refereegranskat)abstract Introduction: The implementation and evaluation of patient participation to obtain high-quality transitional care for older people is an international priority. Intermediate care (IC) services are regarded as an important part of the patient's pathway from the specialist to the primary care levels, bridging the gap between the hospital and the home. Patients may experience varying capacities and conditions for patient participation. Yet, few tools for evaluating patients' preferences for patient participation within IC services are at hand. Accordingly, further knowledge is needed to understand and scaffold processes for patient participation in IC. Therefore, the aim of this project was to translate, validate and pilot test the Patient Preferences for Patient Participation (the 4Ps) with patients in IC services in Norway.Methods: This project comprised two phases: (1) a careful translation and cultural adaptation process, followed by a content validity trial among 15 patients and staff in Norwegian IC and (2) a cross-sectional survey of the instrument with 60 patients admitted to IC.Results: The translation between Swedish and Norwegian required no conceptual or contextual adaptations. The subsequent cross-sectional study, designed as a dialogue between the patients and staff, revealed that only 50% of the participants received a sufficient level of patient participation based on their preferences, mostly indicating that patients were receiving less-than-preferred conditions for engaging in their health and healthcare issues.Conclusion: The 4Ps instrument was deemed suitable for measuring patient participation based on patient preferences in the IC context and was feasible for both healthcare professionals and patients to complete in an interview when arriving at and leaving services. This may support person-centred communication and collaboration, calling for further research on what facilitates patient participation and the implementation of person-centred services for patients in IC.Patient or Public Contribution: First, the current paper is part of the IPIC study (i.e., the implementation of patient participation in IC). Influenced by a James Lind Alliance process, the study addresses research uncertainties identified by patients, next of kin, staff and researchers in the cocreation process. Second, cognitive interviewing was conducted with 15 representatives of the target population: seven patients receiving IC services, one home-dwelling previous IC patient (altogether four women and four men, most of them 80 years or older) and seven healthcare staff working in IC services. The interviews determined the relevance, comprehensiveness and clarity of the 4Ps. Finally, 60 patients admitted to IC took part in the cross-sectional study.
41.	Lannin, Natasha A., et al. (författare) Public perspectives on acquired brain injury rehabilitation and components of care : A Citizens’ Jury 2021 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 24:2, s. 352-362 Tidskriftsartikel (refereegranskat)abstract Background: Brain injury rehabilitation is an expensive and long-term endeavour. Very little published information or debate has underpinned policy for service delivery in Australia. Within the context of finite health budgets and the challenges associated with providing optimal care to persons with brain injuries, members of the public were asked ‘What considerations are important to include in a model of care of brain injury rehabilitation?’.Methods: Qualitative study using the Citizen Jury method of participatory research. Twelve adult jurors from the community and seven witnesses participated including a health services funding model expert, peak body representative with lived experience of brain injury, carer of a person with a brain injury, and brain injury rehabilitation specialists. Witnesses were cross-examined by jurors over two days.Results: Key themes related to the need for a model of rehabilitation to: be consumer-focused and supporting the retention of hope; be long-term; provide equitable access to services irrespective of funding source; be inclusive of family; provide advocacy; raise public awareness; and be delivered by experts in a suitable environment. A set of eight recommendations were made.Conclusion: Instigating the recommendations made requires careful consideration of the need for new models of care with flexible services; family involvement; recruitment and retention of highly skilled staff; and providing consumer-focused services that prepare individuals and their carers for the long term.Patient and public contribution: As jury members, the public deliberated information provided by expert witnesses (including a person with a head injury) and wrote the key recommendations.
42.	Lin, Chung-Ying, et al. (författare) Mediated roles of generalized trust and perceived social support in the effects of problematic social media use on mental health : A cross-sectional study 2021 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 24:1, s. 165-173 Tidskriftsartikel (refereegranskat)abstract Background: Current literature lacks evidence concerning how problematic social media use associates with mental health. To address the gap, the present study used mediation models to examine whether generalized trust and perceived social support (PSS) are potential mediators in the relationship between problematic social media use and mental health. Methods: The sample comprised Iranian adults (n = 1073; 614 females). The participants completed a number of scales to assess problematic social media use (Bergen Social Media Addiction Scale), generalized trust (Generalized Trust Scale), PSS (Multidimensional Scale of Perceived Social Support, happiness (Oxford Happiness Questionnaire Short Form), depression and anxiety (Hospital Anxiety and Depression Scale), and mental quality of life (Short Form-12). Results: Problematic social media use had negative effects on happiness and mental quality of life via the mediators of generalized trust (bootstrapping SE = 0.017; effect = −0.041; 95% CI = −0.079, −0.012) and PSS (bootstrapping SE = 0.023; effect = −0.163; 95% CI = −0.211, −0.119). Problematic social media use had positive effects on anxiety and depression via the mediators of generalized trust (bootstrapping SE = 0.022; effect = 0.064; 95% CI = 0.026, 0.113) and PSS (bootstrapping SE = 0.024; effect = 0.052; 95% CI = 0.009, 0.102). Conclusions: Problematic social media use, generalized trust and PSS are important factors for an individual's mental health. Health-care providers may want to assist individuals regardless of having mental health problems in reducing their problematic social media use and improving their generalized trust and social support.
43.	Lindblom, S., et al. (författare) The manifestation of participation within a co-design process involving patients, significant others and health-care professionals 2021 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 24:3, s. 905-916 Tidskriftsartikel (refereegranskat)
44.	Lindstrom, V, et al. (författare) Patients' experiences of the caring encounter with the psychiatric emergency response team in the emergency medical service-A qualitative interview study 2020 Ingår i: Health expectations : an international journal of public participation in health care and health policy. - : Wiley. - 1369-7625. ; 23:2, s. 442-449 Tidskriftsartikel (refereegranskat)
45.	Luckhaus, Jamie L., et al. (författare) Balancing feeling 'prepared' without feeling 'devoured' : A qualitative study of self-care from the perspective of self-empowered persons living with Parkinson's disease in Sweden 2024 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 27:2 Tidskriftsartikel (refereegranskat)abstract IntroductionParkinson's Disease (PD) is a complex neurodegenerative disease resulting in a wide range of motor and nonmotor symptoms for which the treatment regimen is often complex. People with Parkinson's (PwP) spend time daily on self-care practices including self-tracking signs and symptoms or seeking disease-specific knowledge. Research suggests self-care interventions yield promising care and health outputs for PwP, yet most research focuses on the provider perspective rather than that of those conducting the self-care. This study explores the meaning of self-care, disease-specific knowledge, and self-tracking from the perspective of PwP in Sweden.MethodsQualitative data from three data sets were analyzed and compared using qualitative content analysis: one focus group on self-care (n = 14), one free-text survey on disease-specific knowledge (n = 197) and one free-text survey on self-tracking (n = 33).FindingsThe analysis resulted in three categories: illness-related tasks, internal resources and external resources. Illness-related tasks describe various tasks PwP carry out in self-care, including lifestyle choices, treatments, and self-tracking. Internal resources include personal knowledge/skills as well as mindsets which could facilitate or challenge completing these tasks. Finally, external resources include other PwP, literature, clinicians and other sources of disease-specific knowledge. Self-care was found to fluctuate between beneficial and burdensome depending on such resources.ConclusionsIn conclusion, self-care needs to be acknowledged and discussed more often in PD and other complex conditions. Future self-care interventions should consider self-tracking and disease-specific knowledge as well as internal and external resources in their design and implementation.Patient or Public ContributionA researcher with PD was actively involved in all phases of the research: study design, data collection and analysis, and preparing the manuscript.
46.	Martinsson, Caroline, et al. (författare) Preference-based patient participation for most, if not all: A cross-sectional study of patient participation amongst persons with end-stage kidney disease 2021 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 24:5, s. 1833-1841 Tidskriftsartikel (refereegranskat)abstract Background Patient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients experiences of participation in conjunction with their preferences, particularly in long-term healthcare. The aim of this study was to investigate the extent and variation of preference-based patient participation in patients with end-stage kidney disease (ESKD). Methods A cross-sectional study was conducted with 346 patients in renal care. The main variables were patients preferences for and experiences of patient participation, determined using the Patient Preferences for Patient Participation tool, the 4Ps. Analyses identified the degree of match between preferences and experiences, that is, the preference-based patient participation measure. Results Overall, 57%-84% of the patients reached a sufficient level of preference-based patient participation on the items, while 2%-12% reached an insufficient level. A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment. Conclusion This study shows that, although many patients reach a sufficient level of preference-based patient participation, this is not the case for all patients and/or attributes. Further opportunities for a mutual understanding of patients preferences are needed for healthcare professionals to support person-centred patient participation. Patient or Public Contribution The 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care.
47.	Masterson, Daniel, et al. (författare) Mapping definitions of co-production and co-design in health and social care : A systematic scoping review providing lessons for the future 2022 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 25:3, s. 902-913 Forskningsöversikt (refereegranskat)abstract OBJECTIVES: This study aimed to explore how the concepts of co-production and co-design have been defined and applied in the context of health and social care and to identify the temporal adoption of the terms.METHODS: A systematic scoping review of CINAHL with Full Text, Cochrane Central Register of Controlled Trials, MEDLINE, PsycINFO, PubMed and Scopus was conducted to identify studies exploring co-production or co-design in health and social care. Data regarding date and conceptual definitions were extracted. From the 2933 studies retrieved, 979 articles were included in this review.RESULTS: A network map of the sixty most common definitions and-through exploration of citations-eight definition clusters and a visual representation of how they interconnect and have informed each other over time are presented. Additional findings were as follows: (i) an increase in research exploring co-production and co-design in health and social care contexts; (ii) an increase in the number of new definitions during the last decade, despite just over a third of included articles providing no definition or explanation for their chosen concept; and (iii) an increase in the number of publications using the terms co-production or co-design while not involving citizens/patients/service users.CONCLUSIONS: Co-production and co-design are conceptualized in a wide range of ways. Rather than seeking universal definitions of these terms, future applied research should focus on articulating the underlying principles and values that need to be translated and explored in practice.PATIENT AND PUBLIC CONTRIBUTION: The search strategy and pilot results were presented at a workshop in May 2019 with patient and public contributors and researchers. Discussion here informed our next steps. During the analysis phase of the review, informal discussions were held once a month with a patient who has experience in patient and public involvement. As this involvement was conducted towards the end of the review, we agreed together that inclusion as an author would risk being tokenistic. Instead, acknowledgements were preferred. The next phase involves working as equal contributors to explore the values and principles of co-production reported within the most common definitions.
48.	Mattisson, Marie, et al. (författare) Development and content validation of the Telenursing Interaction and Satisfaction Questionnaire (TISQ) 2019 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 22:6, s. 1213-1222 Tidskriftsartikel (refereegranskat)abstract Background Caller satisfaction with telephone advice nursing (TAN) is generally high, and the interaction is essential. However, a valid questionnaire exploring caller satisfaction in TAN with focus on perceived interaction is lacking. Objective To develop and assess content validity and test-retest reliability of a theoretically anchored questionnaire, the Telenursing Interaction and Satisfaction Questionnaire (TISQ), that explores caller satisfaction in TAN by focusing on perceived interaction between the caller and the telenurse. Methods The study was performed in three stages. First, variables relevant for patient satisfaction in health care were identified through a literature search. Variables were then structured according to the Interaction Model of Client Health Behavior (IMCHB), which provided theoretical guidance. Items relevant for a TAN context were developed through consensus discussions. Then, evaluation and refinement were performed through cognitive interviews with callers and expert ratings of the Content Validity Index (CVI). Finally, test-retest reliability of items was evaluated in a sample of 109 individuals using intraclass correlation coefficients (ICC). Results The TISQ consists of 60 items. Twenty items cover perceived interaction in terms of health information, affective support, decisional control and professional/technical competence. Five items cover satisfaction with interaction and five items overall satisfaction. Remaining items reflect singularity of the caller and descriptive items of the call. The TISQ was found to exhibit good content validity, and test-retest reliability was moderate to good (ICC = 0.39-0.84). Conclusions The items in the TISQ form a comprehensive and theoretically anchored questionnaire with satisfactory content validity and test-retest reliability.
49.	Mulvale, Gillian, et al. (författare) Codesigning health and other public services with vulnerable and disadvantaged populations : Insights from an international collaboration 2019 Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 22:3, s. 284-297 Tidskriftsartikel (refereegranskat)abstract BACKGROUND: Codesign has the potential to transform health and other public services. To avoid unintentionally reinforcing existing inequities, better understanding is needed of how to facilitate involvement of vulnerable populations in acceptable, ethical and effective codesign.OBJECTIVE: To explore citizens' involvement in codesigning public services for vulnerable groups, identify challenges and suggest improvements.DESIGN: A modified case study approach. Pattern matching was used to compare reported challenges with a priori theoretical propositions.SETTING AND PARTICIPANTS: A two-day international symposium involved 28 practitioners, academics and service users from seven countries to reflect on challenges and to codesign improved processes for involving vulnerable populations.INTERVENTION STUDIED: Eight case studies working with vulnerable and disadvantaged populations in three countries.RESULTS: We identified five shared challenges to meaningful, sustained participation of vulnerable populations: engagement; power differentials; health concerns; funding; and other economic/social circumstances. In response, a focus on relationships and flexibility is essential. We encourage codesign projects to enact a set of principles or heuristics rather than following pre-specified steps. We identify a set of principles and tactics, relating to challenges outlined in our case studies, which may help in codesigning public services with vulnerable populations.DISCUSSION AND CONCLUSIONS: Codesign facilitators must consider how meaningful engagement will be achieved and how power differentials will be managed when working with services for vulnerable populations. The need for flexibility and responsiveness to service user needs may challenge expectations about timelines and outcomes. User-centred evaluations of codesigned public services are needed.
50.	Naldemirci, Öncel, et al. (författare) The potential and pitfalls of narrative elicitation in person-centred care 2020 Ingår i: Health Expectations. - : Wiley. - 1369-6513 .- 1369-7625. ; 23:1, s. 238-246 Tidskriftsartikel (refereegranskat)abstract Background Revitalized interest in narrative has informed some recent models of patient and person-centred care. Yet, scarce attention has been paid to how narrative elicitation is actually used in person-centred care practice and in which ways it is incorporated into clinical routine. Aim We aimed to identify facilitators and barriers for narrative elicitation and setting goals in a particular example of person-centred care practice (University of Gothenburg Centre for Person-centred Care, GPCC) where narrative elicitation is considered as a method of setting goals for the patient. Methods Observation of 14 admission interviews including narrative elicitation on an internal medicine ward in Sweden where person-centred care was implemented. Five focus group vignette-based interviews with nurses (n = 53) were conducted to assess confirmation of the emerging themes. Results The inductive analysis resulted in three themes about the strategies to elicit patients' narratives: (a) Preparing for narrative elicitation, (b) Lingering in the patient's narrative, and (c) Co-creating, that is, the practitioner's and third parties' engagement in the patient's narration. Even though there were obstacles to eliciting narratives and setting lifeworld goals in a medical setting, narrative elicitation was often useful to turn general and medical goals into more specific and personal goals. Conclusions Narrative elicitation is neither a simple transition from traditional medical history taking nor a type of structured interview. It entails skills and strategies to be practiced. On the one hand, it revitalizes ethical considerations about clinical relationship building. On the other hand, it can help patients articulate lifeworld goals that are meaningful and important for themselves.

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