| 1. |
- Hurtig, Caroline, 1984-
(författare)
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Patient Participation in Kidney Care : Patients’ and professionals’ perspectives
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Patient participation is central to modern healthcare, known to enhance both physical health and well-being. However, the way in which a person prefers to engage can vary depending on their condition, knowledge, and healthcare context. Person-centred care considers a person’s needs and preferences, thereby facilitating preference-based patient participation. Managing a long-term disease, such as chronic kidney disease (CKD), often necessitates regular contact with healthcare and engagement in symptom management in day-to-day life. What facilitates person-centred patient participation in kidney care is unknown, but a further understanding of patient participation when living with CKD is needed. The overall aim of this thesis was to investigate patient participation in kidney care and assess variations in levels of preferencebased patient participation over time.Method: This thesis comprises four studies and is part of a research intervention project on participation in kidney clinics in south-eastern Sweden. Data collection commenced in 2018 and was concluded in 2022. Study I was of a qualitative design, with group discussions of patients and professionals (n=42) in dialysis care. Studies II and III employed the 4Ps tool, a validated questionnaire on patient participation completed by patients with CKD stage 4 or 5 (n=358). Study II adopted a cross-sectional design and Study III employed a quasi-experimental design to examine changes in participation over time and the effects of two interventions directed at managers and some healthcare professionals. In Study III, data from before and after the interventions were compared. Study IV employed a mixed-methods design, encompassing qualitative and quantitative data. It entailed repeated individual interviews (n=19 patients, 17 professionals) and data from a systematic review of patient records (n=240). The qualitative data from Studies I and IV were addressed using content analysis, while the quantitative data from Studies II, III, and IV were subjected to statistical tests using IBM Statistical Package for Social Sciences (SPSS) and Stan software.Results: Both individuals living with CKD and healthcare professionals recognised the importance of patient participation in kidney care. Patient participation in CKD stage 4 and 5 involved understanding the disease and its management, as well as mutual exchange of knowledge. However, there was not always a shared understanding between patients and professionals as to what patient participation entails. While patients described comprehending their condition and being involved in mutual communication and treatment planning, professionals primarily emphasised treatment management as the key aspect. Moreover, the patient records predominantly documented the professionals' actions for and with their patients. The findings also showed that although most patients had good matches between their preferences and experiences, suggesting sufficient levels of preference-based participation, some patients had insufficient preference-based participation, indicated they had experienced either more or less conditions for participation than their preferences. The staff-directed interventions in the research project did not appear to improve preference-based participation.Conclusion: Living with CKD stage 4 or 5 requires patient engagement and participation, meaning that patients understand how to manage their illness in their day-to-day lives. The studies suggest that further efforts are required in the management of kidney failure to enable more patients to engage in person-centred participation. One potential key to achieving mutual understanding between patients and professionals is dialogue. The tool utilised in these studies may prove useful in facilitating such conversations: the 4Ps is a tool that can be used to identify preferences for and experiences of patient participation. As such, it can be employed to measure preference-based patient participation in clinical settings and research. However, the findings of this thesis indicate that additional efforts are necessary for its implementation and to promote person-centred participation. Therefore, further research is needed, as are strategies healthcare professionals can employ to better recognise and respond to patients' resources and needs.
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| 2. |
- Eldh, Ann Catrine, 1965-
(författare)
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Patient participation : what it is and what it is not
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- In general, patient participation is regarded as being informed and partaking in decision making regarding one’s care and treatment. This interpretation is common in legislation throughout the Western world and corresponding documents guiding health care professionals, as well as in scientific studies. Even though this understanding of the word participation can be traced to a growing emphasis on individuals’ autonomy in society and to certain dictionary defi nitions, there are other ways of understanding participation from a semantic point of view, and no trace of patients’ descriptions of what it is to participate can be found in these definitions. Hence, the aim of this dissertation was to understand patients’ experience of the phenomenon of patient participation. An additional aim was to understand patients’ experience of non-participation and to describe the conditions for patient participation and non-participation, in order to understand the prerequisites for patient participation. The dissertation comprises four papers. The philosophical ideas of Ricoeur provided a basis for the studies: how communication can present ways to understand and explain experiences of phenomena through phenomenological hermeneutics. The first and second studies involved a group of patients living with chronic heart failure. For the fi rst study, 10 patients were interviewed, with a narrative approach, about their experience of participation and non-participation, as defi ned by the participants. For the second study, 11 visits by three patients at a nurse-led outpatient clinic were observed, and consecutive interviews were performed with the patients and the nurses, investigating what they experience as patient participation and non-participation. A triangulation of data was performed to analyse the occurrence of the phenomena in the observed visits. For paper 3 and 4, a questionnaire was developed and distributed among a diverse group of people who had recent experience of being patients. The questionnaire comprised respondent’s description of what patient participation is, using items based on findings in Study 1, along with open-ended questions for additional aspects and general issues regarding situations in which the respondent had experienced patient participation and/or non-participation. The findings show additional aspects to patient participation: patient participation is being provided with information and knowledge in order for one to comprehend one’s body, disease, and treatment and to be able to take self-care actions based on the context and one’s values. Participation was also found to include providing the information and knowledge one has about the experience of illness and symptoms and of one’s situation. Participation occurs when being listened to and being recognised as an individual and a partner in the health care team. Non-participation, on the other hand, occurs when one is regarded as a symptom, a problem to be solved. To avoid non-participation, the information provided needs to be based on the individual’s need and with recognition of the patient’s knowledge and context. In conclusion, patient participation needs to be reconsidered in health care regulations and in clinical settings: patients’ defi nitions of participation, found to be close to the dictionaries’ description of sharing, should be recognised and opportunities provided for sharing knowledge and experience in two-way-communication.
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| 3. |
- Ehrenberg, Anna, et al.
(författare)
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Evidensbaserad praktik i omvårdnad.
- 2021. - 2
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Ingår i: Omvårdnad på avancerad nivå – kärnkompetenser inom sjuksköterskans specialistområden. - Lund : Studentlitteratur AB. - 9789144136240 ; , s. 261-284
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 4. |
- Ehrenberg, Anna, 1956-, et al.
(författare)
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Evidensbaserad vård
- 2021. - 2
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Ingår i: Omvårdnad på avancerad nivå – kärnkompetenser inom sjuksköterskans specialistområden. - Lund : Studentlitteratur AB. - 9789144136240 ; , s. 225-260
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 5. |
- Eldh, Ann Catrine, Professor, 1965-, et al.
(författare)
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Facilitating facilitators to facilitate : Some general comments on a strategy for knowledge implementation in health services
- 2023
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Ingår i: Frontiers Health Services. - : Frontiers Media S.A.. - 2813-0146. ; 3
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Tidskriftsartikel (refereegranskat)abstract
- Numerous endeavours to ensure that day-to-day healthcare is both evidence-based and person-centred have generated extensive, although partial, comprehension of what guarantees quality improvement. To address quality issues, researchers and clinicians have developed several strategies as well as implementation theories, models, and frameworks. However, more progress is needed regarding how to facilitate guideline and policy implementation that guarantees effective changes take place in a timely and safe manner. This paper considers experiences of engaging and supporting local facilitators in knowledge implementation. Drawing on several interventions, considering both training and support, this general commentary discusses whom to engage and the length, content, quantity, and type of support along with expected outcomes of facilitators' activities. In addition, this paper suggests that patient facilitators could help produce evidence-based and person-centred care. We conclude that research about the roles and functions of facilitators needs to include more structured follow-ups and also improvement projects. This can increase the speed of learning with respect to what works, for whom, in what context, why (or why not), and with what outcomes when it comes to facilitator support and tasks.
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| 6. |
- Hurtig, Caroline, et al.
(författare)
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Patient participation in end-stage kidney disease care : variation over time and effects of staff-directed interventions - a quasi-experimental study
- 2023
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Ingår i: BMC Nephrology. - : BioMed Central (BMC). - 1471-2369. ; 24:1
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Tidskriftsartikel (refereegranskat)abstract
- Background Among those elements establishing decent quality of care from a patient perspective, opportunities to participate in accord with one's individual needs and preferences are central. To date, little is known the extent of preference-based patient participation in kidney care, and what facilitates optimal conditions. This study investigated i) preference-based patient participation in kidney care over time, and ii) the effects of interventions designed to enhance person-centred patient participation.Methods A quasi-experimental study was conducted across nine kidney care sites in southeast Sweden. A cohort of 358 patients with stage IV chronic kidney disease (eGRF 15-19 ml/min) or V (eGRF < 15 mL/min) entered the study. Of these, 245 patients (with kidney replacement therapy or intermittent outpatient visits only) completed a survey on patient participation at four time points: every six months from August 2019 to May 2021, patients reported their preferences for and experiences of participation using the validated Patient Preferences for Patient Participation tool, the 4Ps. Between the first and second data collection points, interventions were provided for designated staff to facilitate person-centred participation, using two strategies for two subgroups at three sites each: the managers receiving a bundle of information via e-mail on patient participation in a standard dissemination procedure (three sites), or an additional half-year support program for implementation offered to 1-2 staff per site (three sites), with no intervention for a control group (three sites). The differences in 4Ps data between groups were analysed using multilevel ordinal regression.Results Over time and across all sites, most patients' experiences of participation fully or almost fully matched their engagement preferences (57%-90%). Still, up to 12% of patient reports indicated that their preferences and experiences were insufficiently matched: in these cases, the patients had preferred to be more involved than they had experienced, for example, in making healthcare plans and setting health-related goals. The interventions did not affect the levels of preference-based participation, but patients in the control group sites had slightly more consistent matches.Conclusions Living with kidney failure necessitates patient engagement, but opportunities to participate in accordance with one's preferences are not fully provided for all patients. Additional efforts to support a common understanding and to ensure person-centred patient participation is still needed.
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| 7. |
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| 8. |
- Kvael, Linda A. H., et al.
(författare)
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Preference-based patient participation in intermediate care : Translation, validation and piloting of the 4Ps in Norway
- 2024
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Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 27:1
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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.
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| 9. |
- Ringberg, Magnus, et al.
(författare)
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Athletes' experiences of using a self-directed psychological support, the BAck iN the Game (BANG) smartphone application, during rehabilitation for return to sports following anterior cruciate ligament reconstruction
- 2023
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Ingår i: BMC SPORTS SCIENCE MEDICINE AND REHABILITATION. - : BioMed Central (BMC). - 2052-1847. ; 15
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Tidskriftsartikel (refereegranskat)abstract
- Background: Following anterior cruciate ligament reconstruction (ACLR), many athletes do not return to their sport, often driven by concerns about re-injury. Psychological support strategies might help, but are not routinely included in rehabilitation after ACLR. The BAck iN the Game (BANG) intervention is a 24-week eHealth program delivered via smartphone application (app), beginning directly after ACLR, with a self-directed approach that aims to target the specific challenges athletes encounter in rehabilitation.Aim: To describe athletes' experiences of using the BANG app during rehabilitation, to support returning to sport following ACLR.Method: Participants were athletes, in contact and/or non-contact pivoting sports, who had ACLR with the goal to return to sports. Semi-structured, individual interviews were conducted 6-10 months after their ACLR; all had access to the BANG intervention. Verbatim transcripts were analysed with a qualitative content analysis.Results: The 19 participants were 17-30 years, mean 21.6 years (SD 3.5); 7 men and 12 women. The analysis generated three main categories. (A) Interacting with the app illustrated how, when, or why the participants engaged with the app. The app was helpful because of its varying content, the notifications served as reminders and participants stopped using the app when no longer needing it. (B) Challenging experiences with the app illustrated that the app itself came with some difficulties e.g., content not appearing with the right timing and material not tailored to their sport. (C) Supportive experiences with the app reflected how the app facilitated the participants' rehabilitation progress; it included positive aspects of the app content and navigation, boosting their confidence to return to sport, and motivated them to continue with rehabilitation.Conclusion: The analysis of the interviews illustrates athletes' awareness in interacting with, and the challenging and supportive experiences of using the app. The BANG app might provide support for returning to sport, primarily psychological support, as an adjunct to regular physiotherapy-guided rehabilitation. Athletes' experiences of the BANG app could be improved by healthcare professionals providing additional advice about when to use which content and why.
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| 10. |
- Svenzén, Elin, et al.
(författare)
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Digital communication in primary care: A qualitative descriptive study of patient interviews considering person-centred care
- 2023
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Ingår i: Nordic Journal of Nursing Research. - : Sage Publications. - 2057-1585 .- 2057-1593. ; 43:1
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Tidskriftsartikel (refereegranskat)abstract
- With the growing demand for primary care, provision needs to be efficient, yet retain person-centred and integrated care. Digital communication is suggested as a way to settle these aspects, although there is insufficient knowledge regarding the end-user's perspective. The aim of this study was to describe patients’ experiences of digital communication in their primary care contact, while considering aspects of person-centred care. A purposeful sample of 16 patients (aged 28–85 years) was interviewed via telephone in a qualitative design, and verbatim transcripts were analysed using inductive thematic analysis and a subsequent deductive approach in relation to a person-centred care framework. The study was reported following the COREQ guidelines. The findings indicate that, from a patient perspective, digital communication enables independent contact where one crafts one's medical history at a time and place convenient for oneself, providing opportunities for the primary care triage to consider one's individual input. These aspects of digital communication serve person-centredness, although they were less suitable for certain health issues, but a human interaction was most appropriate when health concerns were ambiguous or complex. Thus, digital communication may serve patients in primary care, but the development and implementation of such services must move beyond technical and professional perspectives. In order to facilitate integrated care, further emphasis is needed on both patients’ experiences, and the principles of person-centred care.
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