Experiences Of Patient Participation Research Articles

Self-Reported Perceptions of Patients and Staff on Participation and Verbal and Social Interactions in High-Security Forensic Psychiatric Care in Sweden.

Studies suggest that experiences of patient participation, as described by both patients and staff, are associated with a significant caring relationship of high quality. This study aimed to investigate staffs' and patients' self-reported perceptions on participation and the frequency and importance of verbal and social interactions in high-security forensic psychiatry. The questionnaire Verbal and Social Interactions (VSI) was used together with the subscale Participation from Quality in Psychiatric Care (QPC). The study was conducted at a large forensic psychiatric clinic in Sweden. Staff and patients rated the frequency of VSI differently while reporting the same perceived degree of patient participation. All categories of VSI were significantly correlated with perceived level of participation with medium or small effect size for the patients. Patients' perceived participation seems to depend on verbal and social interaction within the specific categories 'Showing interest in the patients' feelings, experiences, and behavior' and 'Helping the patients establish structure and routines in their everyday life'. There was, however, a negative association for the latter. The results give a better understanding of what kind of interactions that affect patients' perceived level of participation. Patient participant is a prioritised area for development in forensic psychiatry. The study contributes to a better understanding of what types of interactions that affect the perceived level of participation, while at the same time, it shows important similarities and differences between patient and staff perspectives.

Is patient participation in hypertension care based on patients' preferences? - A cross-sectional study in primary healthcare.

The purpose of this study was to address the need to improve opportunities for patient participation in their health and health services. This paper reports if and how patients' preferences matched their experiences of participation in treatment for hypertension in primary healthcare, and what factors were linked with having had opportunities for participation that matched one's preferences. A total of 949 adult patients treated for hypertension completed the 4Ps (Patient Preferences for Patient Participation) tool, with which they ranked their preferences for and experiences of patient participation. Descriptive and comparative analyses of 4Ps data were performed to identify patient characteristics associated with preference-based participation.Approximately half of the participants experienced patient participation to the extent that they preferred. Women were more likely to have had less patient participation than their preference compared to men. Women were also more likely to prefer being more engaged in hypertension care than men. There were also marked associations between age and educational level with the extent of participation preferred and experienced, leaving patients younger than or with lower education than the mean in this study with more insufficient conditions for patient participation. There is a lack of concurrence between patients' preferences for, and experiences of, patient participation, especially for women. Further efforts to facilitate person-centred engagement are required, along with research on what strategies can overcome human and organisational barriers. The PERHIT- trial was registered with ClinicalTrials.gov: NCT03554382.

Effects of an interactive web-based support system via mobile phone on preference-based patient participation in patients living with hypertension – a randomized controlled trial in primary care

Objective To estimate the effects of an interactive web-based support system via mobile phone on preference-based patient participation in patients with hypertension treated in primary care (compared with standard hypertensive care only). Design A parallel group, non-blinded, randomized controlled trial, conducted October 2018–February 2021. Besides standard hypertensive care, the intervention group received eight weeks of support via mobile phone to facilitate self-monitoring and self-management, tentatively providing for augmented patient engagement. Setting 31 primary healthcare centers in Sweden. Subjects 949 patients treated for hypertension. Main outcome measures The effects on preference-based patient participation, that is, the match between a patient’s preferences for and experiences of patient participation in their health and healthcare. This was measured with the 4Ps (Patient Preferences for Patient Participation) tool at baseline, after 8 weeks, and at 12 months. Data were registered electronically and analyzed with multilevel ordinal regression. Results At baseline, 43–51% had a complete match between their preferences for and experiences of patient participation. There was an indication of a positive effect by a higher match for ‘managing treatment myself’ at 8-weeks in the intervention group. Such preference-based participation in their health and healthcare was reversed at 12 months, and no further effects of the intervention on preference-based patient participation persisted after 12 months. Conclusion The interactive web-based support system via mobile phone had a wavering effect on preference-based patient participation. There is a prevailing need to better understand how person-centered patient participation can be facilitated in primary care.

Patient preferences and experiences of participation in surgical cancer care.

Quality cancer care necessitates opportunities for patient participation, supposedly recognizing the individual's preferences and experiences for being involved in their health and healthcare issues. Previous research shows that surgical cancer patients wish to be more involved, requiring professionals to be sensitive of patients' needs. To explore preference-based patient participation in surgical cancer care. A cross-sectional study was conducted. The Patient Preferences for Patient Participation tool (4Ps) was used, which includes 12 attributes of preferences for and experiences of patient participation. Data were analyzed with descriptive and comparative statistical methods. The results are based on a total of 101 questionnaires. Having reciprocal communication and being listened to by healthcare staff were commonly deemed crucial for patient participation. While 60% of the patients suggested that taking part in planning was crucial for their participation, they had experienced this only to some extent. Learning to manage symptoms and phrasing personal goals were items most often representing insufficient conditions for preference-based patient participation. To support person-centered surgical care, further efforts to suffice preference-based participation are needed, including opportunities for patients to share their experiences and engage in the planning of healthcare activities.

The effects of a mobile application for patient participation to improve patient safety.

BackgroundPatient participation in patient safety activities in care processes is a fundamental element of safer care. Patients play an important role in preventing patient safety incidents and improving health outcomes. Therefore, healthcare providers need to develop and provide educational materials and actionable tools for patient participation.ObjectivesThis study aimed to develop a mobile application for health consumers' participation and evaluate the effect of the mobile application on improving health consumers' participation in patient safety.MethodsA quasi‐experimental design was adopted. We developed a mobile application on the basis of a needs assessment, literature review, compilation of patient safety topics, and validity testing of the application. The target population included Korean adults aged between 30 and 65 years who had visited a medical institution more than once within the most recent 6 months. The intervention group received patient participation training by using the mobile application, Application for Patient Participation in Safety Enhancement, for 2 months. The primary outcome variables were patient safety knowledge, self‐efficacy of participation, willingness to participate and experience of patient participation in patient safety activities. End‐user satisfaction was assessed using a questionnaire. To assess participants' experiences with the intervention, qualitative data were collected through a focus group interview and open‐ended responses to an end‐user satisfaction survey.ResultsThe intervention group (n = 60) had significantly higher overall average scores than the control group (n = 37) with regard to patient safety knowledge (p < .001), self‐efficacy of participation (p = .001), willingness to participate (p = .010) and experience of participation (p = .038) in the post‐survey. The total mean end‐user satisfaction score was 3.56 ± 0.60. The participants expressed the realization that patients could play an important role in improving patient safety.ConclusionsThis study demonstrated that educating health consumers through a mobile application with useful information improves patient participation in patient safety activities. Educational materials and patient participation tools could motivate health consumers' health‐related behaviours.Patient or Public ContributionPatients were involved during the programme development and evaluation.

The Effects of Outpatients’ Experiences of Patient Participation on Patient Satisfaction in Korea

The Effects of Outpatients’ Experiences of Patient Participation on Patient Satisfaction in Korea

Preference-based patient participation for most, if not all: A cross-sectional study of patient participation amongst persons with end-stage kidney disease.

BackgroundPatient 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).MethodsA 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.ResultsOverall, 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.ConclusionThis 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 ContributionThe 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.

” Being mutually involved in recovery”. A hermeneutic exploration of nurses’ experiences of patient participation in psychiatric care

ABSTRACT Purpose This study aims at exploring how psychiatric nurses’ experiences of patient participation could be understood from a caring science perspective. Methods The design was inspired by clinical application research., which is a hermeneutic approach developed within caring science research. . In this study data were co-created during four reflective group dialogues where five participants’ experiences of patient participation were reflected on in the light of caring science theory and research. The transcribed dialogues were subjected to a thematic, hermeneutic interpretation. Results The interpretation gave rise to three themes; giving room for the patient to find his/her own pathway, strengthening personhood, and being in a balanced communion. From these themes an underlying pattern of the meaning of participation as being mutually involved in the patients’ process of recovery arose. Conclusion From a caring science perspective the meaning of psychiatric nurses experiences of patient participation could be understood as an interpersonal process reflecting the reciprocity in human relationships. This means a shift in understanding of patient participation from procedures related to the planning of nursing care, to understanding participation as a process focusing on the mutual involvement of patients and nurses in the patients’ process of recovery.

Assessing and reporting patient participation by means of patient preferences and experiences

BackgroundAlthough patient participation is strongly associated with high quality of healthcare, valid means to measure and report a comprehensive notion of patient participation are scarce. The Patient Preferences for Patient Participation (4Ps) is a new healthcare practice and research tool, comprising patients’ preferences as well as experiences. The 4Ps employs 12 items for the patient to conceptualise patient participation. The aim of this paper is to describe how the two perspectives of patient participation, namely preferences and experiences, can be combined to visualise and report preference-based patient participation.MethodsWith four response alternatives in each section, the 4Ps offers sixteen possible combinations of degree of match per item. Theoretical and clinical principles fostered a tentative order of six ranks and three levels of preference-based patient participation. To test the standard, statistical analyses for ordinal data were performed, using data from a randomised controlled trial evaluating an intervention aiming to improve patient participation. Further, structures for visualising the preference-based patient participation of individuals and groups were suggested.ResultsData from the 4Ps demonstrated the individuals’ preference-based patient participation, indicating either a match or a mismatch for each item. Mismatches represented either the experience of participation surpassing the patient’s preferences, or the patient’s preferences for patient participation not being established. At group level, the suggested approach for visualising and reporting the 4Ps demonstrated that the intervention group had a significantly higher proportion of sufficient preference-based patient participation for certain items than the control group. These results had not been identified earlier, when using the preferences and experiences of patient participation as separate measures.ConclusionsWays to easily acquaint stakeholders with patients’ preferences for patient participation are needed, in order for healthcare staff to better use resources to match the basic requirements of individuals and groups. While the 4Ps can guide professionals to patient participation as framed in legislations, concept analyses and by patients, a visualisation of the results is needed to capture preference-based patient participation. The proposed route to representing degree of match in preferences and experiences may also be relevant to other dimensions of quality of healthcare.

Patient Characteristics that Influence the Experience of Patient Participation in Therapeutic Decision Making

The article's abstract is no available.

Questionnaire measuring patient participation in health care: Scale development and psychometric evaluation.

Patient participation in treatment and care is often encouraged and is desirable because of its proven positive impact on treatment, quality of care and patient safety. To develop an instrument to measure patient participation in health care and to investigate the measurement properties of the Patient Participation Questionnaire (PPQ). A literature review was conducted to develop a model of patient participation. The PPQ was constructed consisting of 17 items organized into four subscales. Psychometric evaluation of factor structure, convergent construct validity by hypothesis testing and analyses of internal consistency using Cronbach's alpha were performed on data from a hospitalised mixed group of patients with cardiac disease, pulmonary disease and cancer (N=378 patients). Confirmatory factor analysis did not show a clear model fit, which is why an exploratory factor analysis was performed, suggesting a different four subscale structure consisting of a total of 16 items. The four subscales were labelled Shared decision power, Adapted and individualized knowledge, Collaboration and Human approach. There were strong ceiling effects on all items. Analysis of convergent construct validity showed a moderate correlation (0.59) between the PPQ and another instrument measuring patient participation. Internal consistency for the total PPQ score was high: 0.89. In a mixed group of patients with cardiac disease, pulmonary disease and cancer, the PPQ showed promising psychometric properties in terms of factor structure, convergent construct validity and internal consistency. The PPQ may be used to shed light on the experience of patient participation and guide quality improvements.

Mixed-method investigation of health consumers’ perception and experience of participation in patient safety activities

ObjectivesThis study aimed to examine the factors influencing patient safety behaviours and to explore health customers’ experiences of patient participation in the healthcare system.DesignA mixed-method sequential explanatory design was employed...

Family members' experiences with adult participation in weight management programs: Triadic perspectives from patients, partners and children.

Spouses are known to influence the outcomes of an individual's attempt at weight loss, but little is known about the broader influence of, and on, the family. The objectives were to explore: (a) the effects of an adult weight management program on the family and (b) family factors that help or hinder patient weight loss. A qualitative design was employed to explore triadic family members' experiences of patient participation in a weight management program. Semi-structured interviews were conducted with patients, partners and children (ages 7-18). Questions included support for patient participation and weight loss, dietary choices, meal preparation, physical activity routines, the home-food environment, communication about health and family dynamics. Thematic analysis was used, where codes and categories of codes were then grouped together to create themes and subthemes. Nineteen triadic interviews were conducted (57 total). Seven themes emerged, including four related to Outcomes (objective 1): (a) shift in family dynamics, (b) family behaviour change, (c) child observations of family change, (d) indirect benefit to partner; and three related to Process (objective 2): (e) level of accountability, (f) patient perception of support and (g) support is essential and flexible. Future research and clinical applications from these themes should seek to determine the positive behaviour change that was evident in the families that were interviewed, where the culmination of family interactions, expectations and concurrent partner weight loss indicates the potential longevity of weight management programs beyond patients' own participation.

Health-care professionals' experiences of patient participation among older patients in intermediate care-At the intersection between profession, market and bureaucracy.

BackgroundPatient participation is a key concern in health care. Nevertheless, older patients often do not feel involved in their rehabilitation process. Research states that when organizational conditions exert pressure on the work situation, care as a mere technical activity seems to be prioritized by the health‐care staff, at the expense of patient involvement.ObjectiveThe aim of this article is to explore how health‐care professionals experience patient participation in IC services, and explain how they perform their clinical work balancing between the patient's needs, available resources and regulatory constraints.DesignUsing a framework of professional work and institutional logics, underpinned by critical realism, we conducted semi‐structured interviews with 18 health‐care professionals from three IC institutions.ResultsIC appears as an important service in the patient pathway for older people with a great potential for patient participation. However, health care staff may experience constraints that prohibit them from using professional discretion, which is perceived as a threat to patient participation. Further, they may adopt routines that simplify their interactions with patients. Our results call for more emphasis on an individualized rehabilitation process and a recognition that psychological and social aspects are critical for patient participation in IC.ConclusionPatients interact in the face of conflicting institutional priorities or protocols. The study adds important knowledge about the practice of patient participation in IC from a front‐line provider perspective. Underlying mechanisms are identified to understand and recommend how to facilitate patient participation at different levels in narrowing the gap between policy and clinical work in IC.

Registered Nurses' experiences of patient participation in hospital care: supporting and hindering factors patient participation in care.

Promoting patient participation in care is an international priority identified by the World Health Organization and various national bodies around the world and an important aspect of person-centred care. The aim of this study was to describe Registered Nurses' experiences with patient participation in nursing care including their barriers and facilitators for participation. The study setting was a University Hospital in Sweden. Interviews were conducted with twenty Registered Nurses working at medical wards in 2013. Thematic data analysis was used to analyse the transcribed interview data. Twenty nurses from four wards in two hospitals were included. Five themes emerged from the analysis including listening to the patient, engaging the patient, relinquishing some responsibility, sharing power and partnering with patients. The core theme 'partnering with patients' was enacted when nurses listened to and engaged patients and when they relinquished responsibility and shared power with patients. In addition, hindering and facilitating factors to participation were identified, such as patients wanted to take on a passive role, lack of teamwork which participants understood would enhance interprofessional understanding and improve patient safety. Patient participation was hindered by medical jargon during the ward round, there was a risk of staff talking over patients' heads but sometimes inevitable having conversations at the patient's bedside. However, nurses preferred important decisions to be made away from bedside. It all came down to partnering with the patient and participants described how they made an effort to respect the patients' view and accept patient as a part of the care team. Identified hindering factors for participation were lack of teamwork, patients' taking on passive roles and communication during ward rounds having conversations at the patient's bedside. Nurses wished for a change but lacked strategies on how. Nurses preferred important decisions to be made away from bedside.

It's About Me: Patients' Experiences of Patient Participation in the Web Behavior Change Program for Activity in Combination With Multimodal Pain Rehabilitation.

BackgroundPatients’ participation in their health care is recognized as a key component in high-quality health care. Persons with persistent pain are recommended treatments with a cognitive approach from a biopsychosocial explanation of pain, in which a patient’s active participation in their rehabilitation is in focus. Web-based interventions for pain management have the potential to increase patient participation by enabling persons to play a more active role in rehabilitation. However, little is known about patients’ experiences of patient participation in Web-based interventions in clinical practice.ObjectiveThe objective of our study was to explore patients’ experiences of patient participation in a Web Behavior Change Program for Activity (Web-BCPA) in combination with multimodal rehabilitation (MMR) among patients with persistent pain in primary health care.MethodsQualitative interviews were conducted with 15 women and 4 men, with a mean age of 45 years. Data were analyzed with qualitative content analysis.ResultsOne theme, “It’s about me,” and 4 categories, “Take part in a flexible framework of own priority,” “Acquire knowledge and insights,” “Ways toward change,” and “Personal and environmental conditions influencing participation,” were developed. Patient participation was depicted as being confirmed in an individualized and structured rehabilitation framework of one’s own choice. Being confirmed was fundamental to patient participation in the interaction with the Web-BCPA and with the health care professionals in MMR. To acquire knowledge and insights about pain and their life situation, through self-reflection in the solitary work in the Web-BCPA and through feedback from the health care professionals in MMR, was experienced as patient participation by the participants. Patient participation was described as structured ways to reach their goals of behavior change, which included analyzing resources and restrictions, problem solving, and evaluation. The individual’s emotional and cognitive resources and restrictions, as well as health care professionals and significant others’ attitudes and behavior influenced patient participation in the rehabilitation. To some extent there were experiences of restrained patient participation through the great content of the Web-BCPA.ConclusionsPatient participation was satisfactory in the Web-BCPA in combination with MMR. The combined treatment was experienced to increase patient participation in the rehabilitation. Being confirmed through self-identification and finding the content of the Web-BCPA trustworthy was emphasized. Patient participation was experienced as a learning process leading to new knowledge and insights. Higher user control regarding the timing of the Web-BCPA and therapist guidance of the content may further increase patient participation in the combined treatment.

The development and initial validation of a clinical tool for patients' preferences on patient participation--The 4Ps.

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. 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. 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. '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. 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.

Family Members’ Perspectives on Patient Participation in Spinal Cord Injury Rehabilitation

Purpose: To examine the importance and experiences of patient participation in spinal cord injury (SCI) rehabilitation from the perspective of family members, and compared with patients’ views. Method: Family members (N=83) and discharged patients with SCI (N=141) completed the Patient Participation in Rehabilitation Questionnaire (PPRQ), assessing the importance and experiences of the domains Respect and integrity; Planning and decision-making; Information and knowledge; Motivation and encouragement; and Involvement of family. Importance ratings were compared between all family members and patients, and experience ratings were compared between patient-family dyads (N=74). Results: Both family members and patients rated all participation domains as very or extremely important (m ≥4.0 of max 5). Family members rated all domains as slightly more important than did patients; however, patients rated Planning and decision-making more important that the family members (Δ=0.20; p<0.01). No significant differences were found between patients and family members regarding experience ratings and agreement was substantial (ICC=0.63-0.80). Conclusions: Current guidelines recommend involvement of family members in SCI care and rehabilitation. This study shows that family members, and patients alike, also considered their involvement as very important and that they were often given opportunities to be involved. Moreover, patients and family members shared perceptions of conditions necessary for facilitating and promoting participation. Although considerable congruence was found between family members’ and patients’ assessments, agreement was not perfect. As incongruence between patients and family members regarding the quality and delivery of care may disturb the rehabilitation process and its outcomes, it is important that differences in perspectives be identified and successfully resolved. The PPRQ may be useful i

Being in an exchange process: Experiences of patient participation in multimodal pain rehabilitation

To explore primary healthcare patients' experiences of patients participation in multimodal pain rehabilitation. A total of 17 patients who had completed multimodal rehabilitation for persistent pain were interviewed. The interviews were analysed using qualitative content analysis. One theme, Being in an exchange process, and 4 categories emerged. The theme depicted patient participation as a continuous exchange of emotions, thoughts and knowledge. The category Fruitful encounters represented the basic prerequisites for patient participation through dialogue and platforms to meet. Patients' emotional and cognitive resources and restrictions, as well as knowledge gaps, were conditions influencing patient participation in the category Inequality in co-operation. Mutual trust and respect were crucial conditions in patient's personal relationships with the health professionals, forming the category Confidence-inspiring alliance. In the category Competent health professionals, the health professionals' expertise, empathy and personal qualities, were emphasized to favour patient participation. Patient participation can be understood as complex and individualized. A confidence-inspiring alliance enables a trusting relationship to be formed between patients and health professionals. Patients emphasized that health professionals need to play an active role in building common ground in the interaction. Understanding each patient's needs in the participation process may favour patient participation.

Patient participation in nursing care from a patient perspective: a Grounded Theory study

the study's rationale: Patients' active participation in their own care is expected to contribute to increased motivation to improve their own condition, better treatment results and greater satisfaction with received care. Knowledge of patients' understanding of participation is of great importance for nurses in their efforts to meet patient expectations and for quality of nursing care. The aim was to explore the meaning of patient participation in nursing care from a patient point of view. Six tape-recorded focus group interviews with 26 Swedish informants described opinions on and experiences of patient participation. The informants consisted of patients in somatic inpatient care as well as discharged patients from such a setting. The Grounded Theory method was used and the data were analysed using constant comparative analysis. The ethics of scientific work was followed. Each study participant gave informed consent after verbal and written information. The Ethics Committee of Göteborg University approved the study. The patients emphasised the importance of collaboration to improve participation. The core category, Insight through consideration, was generated from four inter-related categories: (i) Obliging atmosphere; (ii) Emotional response; (iii) Concordance; and (iv) Rights and their 15 subcategories. The meaning structures of patient participation in nursing care revealed from a patient point of view, seemed to mainly consist of not only external factors presented by the institutions -- by the professionals -- but also internal patient factors. The patients' view of participation should be considered to a greater degree in nursing practice and education, as should also further development of nursing care policy programmes, evaluation and quality assurance criteria. For further development, studies are needed in similar and other settings.