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1.
BMJ Open ; 14(1): e079229, 2024 01 31.
Article in English | MEDLINE | ID: mdl-38296288

ABSTRACT

OBJECTIVE: This study aimed to elucidate the meaning of lived experiences of support from social networks and the healthcare sector in persons with chronic pain. DESIGN: A qualitative, phenomenological hermeneutic method was used to analyse interview data. SETTING: Participants were recruited from patient organisations in Sweden. PARTICIPANTS: Ten (seven women, two men and one non-binary) individuals with chronic musculoskeletal pain were included. FINDINGS: The meaning of lived experiences of support in persons with chronic pain involves balancing between being the most valuable player (MVP) and passing the ball, meaning balancing between being a capable person and accepting support to be that capable person. CONCLUSION: For participants who lived with chronic pain, support means balancing between being capable (the MVP) and willing to accept support (passing the ball), which aligns with the concept of person-centred care. Our findings may be useful for policy-makers, managers and clinical professionals when planning and performing care for persons with chronic pain. Future research should focus on how the healthcare sector can create support to enable persons with chronic pain to be the MVP while being able to pass the ball to their social networks and the healthcare sector.


Subject(s)
Chronic Pain , Musculoskeletal Pain , Male , Humans , Female , Chronic Pain/therapy , Sweden , Patient-Centered Care , Qualitative Research
2.
BMJ Open ; 13(12): e076285, 2023 12 14.
Article in English | MEDLINE | ID: mdl-38101823

ABSTRACT

OBJECTIVE: Calm rooms have been developed and implemented in psychiatric inpatient care settings to offer patients a dedicated space for relaxation in a convenient and safe environment. Recent technology developments have enabled virtual reality (VR) equivalents of calm rooms that can be feasibly deployed in psychiatric care settings. While research has shown VR environments to be efficacious in inducing relaxation, little is known how these virtual calm rooms are perceived by patients. The aim of this study was to elucidate patient experiences of using a VR calm room in a psychiatric inpatient setting. DESIGN: Qualitative interview study. Semi-structured interviews were analysed using qualitive inductive content analysis, which focuses on the interpretation of texts for making replicable and valid inferences. SETTING: Swedish hospital psychiatric inpatient care setting with a wireless, three degrees-of-freedom VR head-mounted display running a calm room application simulating nature environment. PARTICIPANTS: 20 adult patients (12 women) with bipolar disorder (n=18) or unipolar depression (n=2). RESULTS: Participants experienced the use of the VR calm room as having a positive impact on them, inducing awareness, calmness and well-being. They were thankful to be offered a non-pharmacological alternative for anxiety relief. Participants also expressed that they had some concerns about how they would react emotionally before using the VR device. However, after use, they highlighted that their overall experience was positive. They also expressed that they could see potential for further development of VR technology in psychiatric care. CONCLUSIONS: VR technology has the potential to solve pressing logistic issues in offering calm rooms in psychiatric inpatient care. VR calm rooms appear to be appreciated by psychiatric inpatients, who value their accessibility, convenience and variety of modalities offered. Participants perceived an increase in their well-being after use.


Subject(s)
Inpatients , Virtual Reality , Adult , Humans , Female , Sweden , Emotions , Patient Outcome Assessment
3.
Nurs Open ; 10(12): 7509-7527, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37798952

ABSTRACT

AIM: This systematic literature review aimed to identify, appraise and synthesize available research studies that apply intersectionality in nursing research. DESIGN: Systematic review. DATA SOURCES: Empirical and theoretical nursing studies published before February 2022 were identified from the PubMed and CINAHL databases. Studies were eligible for inclusion if they substantially covered the topics of intersectionality and nursing, had undergone peer-review, and were written in English. REVIEW METHODS: The PRISMA 2020 statement for reporting systematic reviews was used to report findings. The Joanna Briggs Institute Critical Appraisal tools were used to assess the quality of the included research studies. RESULTS: Out of 331 identified studies, 60 studies were substantially about nursing and intersectionality, and were included in the review. There are a myriad of ways that the concept of intersectionality has been adopted in nursing research. Furthermore, there was great heterogeneity in the definition and application of the concept of intersectionality, and only a few studies were empirical. CONCLUSION: There is a need for robust and clear framing of how the concept of intersectionality is defined and understood in nursing research. There is also a need for more empirical research effectively adopting the concept of intersectionality to enhance our understanding of how health inequities operate within the field of nursing. NO PATIENT OR PUBLIC CONTRIBUTION: No patients, service users, caregivers or members of the public were involved in this work.


Subject(s)
Intersectional Framework , Nursing Research , Humans , Empirical Research
4.
J Med Internet Res ; 25: e42365, 2023 05 19.
Article in English | MEDLINE | ID: mdl-37204858

ABSTRACT

BACKGROUND: Interest in sensory rooms or so-called "calm rooms" in psychiatric inpatient care has increased significantly. In a hospital setting, their purpose is to introduce a relaxing environment to increase well-being as well as to decrease anxiety and aggressive behaviors. Calm rooms can also be used as a tool to provide self-help through a convenient environment for the patients and, at the same time, strengthen the therapeutic relationship between the patient and the professional. Recent developments in virtual reality (VR) have made virtual calm rooms possible, but these have not yet been evaluated in psychiatric inpatient care. OBJECTIVE: This study aimed to compare the effects of VR and physical calm rooms on self-reported well-being and physiological markers of arousal. METHODS: The study was conducted in 2 inpatient psychiatric wards specializing in bipolar disorder from March 2019 to February 2021. Patients who were already admitted were asked if they were interested in using a calm room and willing to provide ratings. This study relied on the quasi-randomized allocation of patients to the wards, which either had a physical or VR calm room. Self-assessment scales (Montgomery-Åsberg Depression Rating Scale-Self Assessment [MADRS-S], Beck Anxiety Scale, and Clinical Global Impression) were used to determine the participants' baseline level of depressive and anxiety symptoms before their use of the physical or VR calm room. The study determined the state of well-being measured using an 11-point visual analog scale (VAS) as well as arousal measured by blood pressure (systolic and diastolic) and heart rate before and after the use of the calm rooms. The primary end point was self-reported well-being using the VAS. RESULTS: A total of 60 participants were included-40 used the VR calm room and 20 used the physical calm room. The mean age of participants was 39 years and the majority were women (35/60, 58%). Analysis of VAS measurement showed improved well-being at the group level from before to after the intervention (P<.05), with no statistically significant difference in effects between the 2 different interventions. Effects were not moderated by baseline depression levels (dichotomized as MADRS-S >20 or ≤20) despite an overall difference in reported well-being between subgroups. CONCLUSIONS: Although the power in this study was low, the findings of this first study indicate comparable effects with respect to well-being and arousal of a VR calm room and a physical calm room. This suggests that a VR calm room can be a viable alternative when the use of a physical calm room is not an option for logistic or other reasons. TRIAL REGISTRATION: ClinicalTrials.gov NCT03918954; https://clinicaltrials.gov/ct2/show/NCT03918954.


Subject(s)
Inpatients , Virtual Reality , Humans , Male , Female , Adult , Anxiety/therapy , Pain Measurement , Anxiety Disorders
5.
BMJ Open ; 13(4): e066617, 2023 04 11.
Article in English | MEDLINE | ID: mdl-37041054

ABSTRACT

OBJECTIVE: Chronic pain is a complex health problem affecting about one-fifth of the European population. It is a leading cause of years lived with disability worldwide, with serious personal, relational and socioeconomic consequences. Chronic pain and sick leave adversely affect health and quality of life. Thus, understanding this phenomenon is essential for reducing suffering, understanding the need for support and promoting a rapid return to work and an active lifestyle. This study aimed to describe and interpret persons' experiences of being on sick leave due to chronic pain. DESIGN: A qualitative study with semistructured interviews analysed using a phenomenological hermeneutic approach. SETTING: Participants were recruited from a community setting in Sweden. PARTICIPANTS: Fourteen participants (12 women) with experiences of part-time or full-time sick leave from work due to chronic pain were included in the study. RESULTS: Suffering out of sight but not out of mind was the main theme of the qualitative analysis. This theme implies that the participants' constant suffering was invisible to others, causing them to feel they were not being justly treated in society. Feeling overlooked led to a continuous struggle for recognition. Moreover, the participants' identities and their trust in themselves and their bodies were challenged. However, our study also revealed a nuanced understanding of the experiences of sick leave as a consequence of chronic pain, where the participants learnt important lessons, including coping strategies and re-evaluated priorities. CONCLUSIONS: Being on sick leave due to chronic pain threatens a person's integrity and leads to substantial suffering. An enhanced understanding of the meaning of sick leave due to chronic pain provides important considerations for their care and support. This study highlights the importance of feeling acknowledged and being met with justice in encounters with others.


Subject(s)
Chronic Pain , Return to Work , Humans , Female , Quality of Life , Sick Leave , Employment
6.
Syst Rev ; 12(1): 73, 2023 04 29.
Article in English | MEDLINE | ID: mdl-37120578

ABSTRACT

Research evidence supporting the implementation of centredness in health care is not easily accessible due to the sheer amount of literature available and the diversity in terminology and conceptualisations used. The use of text-mining functions to semi-automate the process of screening and collating citations for a review is a way of tackling the vast amount of research citations available today. There are several programmes that use text-mining functions to facilitate screening and data extraction for systematic reviews. However, the suitability of these programmes for reviews on broad topics of research, as well as the general uptake by researchers, is unclear. This commentary has a dual aim, which consists in outlining the challenges of screening literature in fields characterised by vague and overlapping conceptualisations, and to exemplify this by exploratory use of text-mining in the context of a scoping review on centredness in health care.


Subject(s)
Data Mining , Software , Humans , Systematic Reviews as Topic , Delivery of Health Care , Health Facilities , Patient-Centered Care
7.
Eur J Cardiovasc Nurs ; 22(2): 113-125, 2023 03 01.
Article in English | MEDLINE | ID: mdl-35737922

ABSTRACT

AIMS: The symptom burden of patients with chronic heart failure (CHF), together with social determinants and psychosocial factors, results in limitations to maintain adequate social life and roles, participate in social events and maintain relationships. This situation's impact on health outcomes makes it of utmost importance to develop meaningful social networks for these patients. The primary objective aimed to identify randomized controlled trials that impact the social dimension of people with CHF. The secondary objectives were to analyze the methodological quality of these interventions, establish their components, and synthesize their results. METHODS AND RESULTS: A systematic review following PRISMA guidelines was conducted in Pubmed, Scopus, Cochrane CENTRAL, PsychINFO, and CINAHL databases between 2010 and February 2022. The Revised Cochrane risk-of-bias tool for randomized trials was used. The protocol was registered in PROSPERO. Eight randomized controlled trials were identified, among which two were at 'high risk of bias.' Interventions were synthesized according to the following categories: delivery format, providers and recipients, and the intervention content domains. Half of the studies showed statistical superiority in improving the intervention group's social support in people with CHF. CONCLUSION: This review has highlighted the scarcity of interventions targeting the social dimension of people with CHF. Interventions have been heterogeneous, which limits the statistical combination of studies. Based on narrative review and vote counting, such interventions could potentially improve social support and self-care, which are important patient reported outcomes, thus warrant further research. Future studies should be co-created with patients and families to be adequately targeted. REGISTRATION: PROSPERO CRD42021256199.


Subject(s)
Heart Failure , Humans , Randomized Controlled Trials as Topic , Chronic Disease , Heart Failure/psychology , Self Care/methods , Social Support
8.
Int J Older People Nurs ; 18(1): e12521, 2023 Jan.
Article in English | MEDLINE | ID: mdl-36464490

ABSTRACT

BACKGROUND: Aortic stenosis is the most common valvular disease, and its prevalence is increasing due to the ageing population. Transcatheter aortic valve replacement (TAVR) is the recommended method when treating frail, older patients. Knowledge of what motivates older patients to undergo TAVR is important, in order to meet patients' expectations. OBJECTIVE: The study aimed to explore the meaning of older patients' motivation to undergo TAVR. DESIGN AND METHODS: The design was a qualitative study, analysed using a phenomenological hermeneutic approach. In-depth, semi-structured interviews with open-ended questions were conducted. Participants were selected from a specialist cardiology clinic in Sweden. Eighteen patients, six women and twelve men, aged 66-92, were recruited. RESULTS: The analysis showed that patients who had agreed to undergo TAVR were deeply affected by their body's failure. Before the TAVR procedure, the participants were limited in their daily activities and experienced that their life was on hold. They experienced that they were barely existing. They were aware of their life-threatening condition and were forced to confront death. Yet despite an advanced age, they still had considerable zest for life. It was very important to them to remain independent in everyday life, and fear of becoming dependent had a strong impact on their motivations for undergoing TAVR. CONCLUSION: Older patients' motivations to undergo TAVR are strongly influenced by their fear of being dependent on others and their zest for life. Health care professionals need to support these patients in setting realistic and personalised goals. IMPLICATION FOR PRACTICE: Person-centered care actions could facilitate patients' involvement in the decision about TAVR and strenghten patients' beliefs in their own capabilities, before and after TAVR.


Subject(s)
Aortic Valve Stenosis , Motivation , Patients , Transcatheter Aortic Valve Replacement , Female , Humans , Male , Aortic Valve Stenosis/surgery , Aortic Valve Stenosis/epidemiology , Hermeneutics , Transcatheter Aortic Valve Replacement/psychology , Aged , Aged, 80 and over , Patients/psychology , Qualitative Research , Activities of Daily Living/psychology , Fear/psychology , Sweden
9.
J Pain Symptom Manage ; 64(2): 146-155, 2022 08.
Article in English | MEDLINE | ID: mdl-35460831

ABSTRACT

CONTEXT: Socio-demographic differences, including place of residence, socio-economic status, ethnicity, and gender, have been associated with various inequities in cancer care outcomes. OBJECTIVES: The aims were to distinguish subgroups of patients with different symptom patterns at the time of the initial oncology visit and determine which clinical and socio-demographic variables are associated the different symptom patterns. METHOD: Responses to the Edmonton Symptom Assessment Scale- revised and clinical and socio-demographic variables were obtained via the Ontario Cancer Registry and linked health data files. Latent class analyses were conducted to identify and compare the subgroups. RESULTS: The cohort (n = 216,110) with a mean age of 64.5 years consisted of 54.1% women. The analyses identified six latent classes (proportions ranging from 0.09 to 0.31) with distinct symptom patterns, including: 1) many severe symptoms, 2) many less severe symptoms, 3) predominantly mild symptoms, 4) severe psychosocial symptoms, 5) severe somatic symptoms, 6) few symptoms. The subgroups were associated not only with clinical differences (diagnoses and functional status), but also with various socio-demographic (age, sex) and community characteristics (neighborhood income, proportion of foreign born, rurality). CONCLUSION: The results indicated that there were substantial differences in symptom patterns at the time of the initial oncology visit, which were associated with both clinical diagnoses and socio-demographic differences. These results point to the importance of taking the social situation of patients into account, and not just diagnosis, to better understand differences in symptom patterns of people living with cancer.


Subject(s)
Neoplasms , Adult , Cohort Studies , Female , Humans , Latent Class Analysis , Male , Middle Aged , Neoplasms/diagnosis , Neoplasms/epidemiology , Neoplasms/therapy , Social Class , Symptom Assessment
10.
BMC Health Serv Res ; 22(1): 442, 2022 Apr 04.
Article in English | MEDLINE | ID: mdl-35379247

ABSTRACT

BACKGROUND: Process evaluations are useful in clarifying results obtained from randomised controlled trials (RCTs). Traditionally, the degree of intervention usage in process evaluations is monitored by measuring dose or evaluating implementation fidelity. From a person-centred perspective, such evaluations should be supplemented with patients' experiences of meaningful use, given that intervention use should be agreed upon between interested parties and tailored to each patient. This study aimed to elucidate patients' experiences of a remote person-centred care (PCC) intervention by deepening the understanding of, if, how and for whom the intervention contributed to meaningful use. METHODS: Patients (n = 86) were recruited from the RCT PROTECT intervention group. A convergent mixed-method approach was implemented. Data were collected in parallel with the ongoing RCT via a survey, including ratings and written comments on meaningful or non-meaningful use. Also, interviews were performed with twelve purposefully selected participants. Descriptive statistics, logistic regression and content analysis were employed. Data sources were integrated in the results. RESULTS: Most participants rated the overall intervention as meaningful to use, with the telephone support rated as most meaningful. Interviews and written comments showed that patient ratings on meaningful use were explained by four categories: Not in need, Communication deficiency, Benefits in everyday life and A personal boost. Meaningful use of rating symptoms on the digital platform was predicted by living alone (adjusted odds ratio [aOR] = 2.8 P = .044). A diagnosis of chronic obstructive pulmonary disease (COPD) predicted meaningful use of digital platform direct messaging (aOR = 3.5, P = .045). Moreover, having access to direct-dial telephone contact explained meaningful use among participants with low ratings of technical competence (aOR = 3.6, P = .014). CONCLUSIONS: The combined digital platform and structured telephone support could be helpful in identifying preventive actions to maintain health for people diagnosed with COPD and chronic heart failure but tends to be more meaningful for those diagnosed with COPD. Overall, lower adoption of the digital platform was seen compared to telephone support. Shortcomings were noted in the digital platform's implementation that negatively influences experiences of meaningful use. When used, the intervention proved to be an easily applicable and valued tool to support preventive actions in a person-centred manner.


Subject(s)
Meaningful Use , Telephone , Humans , Patient-Centered Care/methods , Research Design , Self Care
11.
Health Expect ; 25(3): 885-901, 2022 06.
Article in English | MEDLINE | ID: mdl-35261138

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.


Subject(s)
Delivery of Health Care , Patient-Centered Care , Health Facilities , Humans , Patient-Centered Care/methods , Surveys and Questionnaires
12.
Health Soc Care Community ; 30(4): e842-e858, 2022 07.
Article in English | MEDLINE | ID: mdl-34918403

ABSTRACT

Chronic heart failure (CHF) is a progressive and disabling condition that significantly impacts patients' daily lives. One of its effects is decreased opportunities to participate in social life, leading to reduced social interaction, loneliness, social isolation and lack of social support to continue with their daily life activities. This study aimed to explore the causes, experiences, and consequences of the impact of CHF on the social dimension of the person. According to the Arksey & O'Malley method, a scoping review of the literature was conducted to examine existing knowledge in the area, summarise existing evidence and identify gaps in the literature. The search was conducted in the PubMed, CINAHL, PsychINFO, Scopus, and Web of Science databases from January 2010 to November 2021. Twenty-six articles were identified. The reasons why CHF influences the social dimension of the person were multifactorial and related to physical aspects, sociodemographics, lifestyle changes and the feelings experienced by these patients. Social relationships play a key role, and the benefits of good social relationships and the impact of poor or inadequate social support were identified. Furthermore, the influence of alterations in the social dimension on the CHF patient's clinical outcomes was described. This approach will help to detect and better understand the bidirectional influence that exists in each person between social isolation, relationships, and support life experiences, self-care activities, and morbi-mortality rates. These findings have shown the importance of detecting higher-risk groups and systematically assessing factors related to the social dimension in all patients with CHF.


Subject(s)
Heart Failure , Loneliness , Chronic Disease , Health Services , Heart Failure/therapy , Humans , Social Isolation
13.
J Med Internet Res ; 23(12): e26794, 2021 12 13.
Article in English | MEDLINE | ID: mdl-34898447

ABSTRACT

BACKGROUND: Chronic obstructive pulmonary disease (COPD) and chronic heart failure (CHF) are characterized by severe symptom burden and common acute worsening episodes that often require hospitalization and affect prognosis. Although many studies have shown that person-centered care (PCC) increases self-efficacy in patients with chronic conditions, studies on patients with COPD and CHF treated in primary care and the effects of PCC on the risk of hospitalization in these patients are scarce. OBJECTIVE: The aim of this study is to evaluate the effects of PCC through a combined digital platform and telephone support for people with COPD and CHF. METHODS: A multicenter randomized trial was conducted from 2018 to 2020. A total of 222 patients were recruited from 9 primary care centers. Patients diagnosed with COPD, CHF, or both and with internet access were eligible. Participants were randomized into either usual care (112/222, 50.5%) or PCC combined with usual care (110/222, 49.5%). The intervention's main component was a personal health plan cocreated by the participants and assigned health care professionals. The health care professionals called the participants in the intervention group and encouraged narration to establish a partnership using PCC communication skills. A digital platform was used as a communication tool. The primary end point, divided into 2 categories (improved and deteriorated or unchanged), was a composite score of change in general self-efficacy and hospitalization or death 6 months after randomization. Data from the intention-to-treat group at 3- and 6-month follow-ups were analyzed. In addition, a per-protocol analysis was conducted on the participants who used the intervention. RESULTS: No significant differences were found in composite scores between the groups at the 3- and 6-month follow-ups. However, the per-protocol analysis of the 3-month follow-up revealed a significant difference in composite scores between the study groups (P=.047), although it was not maintained until the end of the 6-month follow-up (P=.24). This effect was driven by a change in general self-efficacy from baseline. CONCLUSIONS: PCC using a combined digital platform and structured telephone support seems to be an option to increase the short-term self-efficacy of people with COPD and CHF. This study adds to the knowledge of conceptual innovations in primary care to support patients with COPD and CHF. TRIAL REGISTRATION: ClinicalTrials.gov NCT03183817; http://clinicaltrials.gov/ct2/show/NCT03183817.


Subject(s)
Heart Failure , Pulmonary Disease, Chronic Obstructive , Heart Failure/therapy , Humans , Patient-Centered Care , Pulmonary Disease, Chronic Obstructive/therapy , Self Care , Telephone
14.
Health Sci Rep ; 4(2): e309, 2021 Jun.
Article in English | MEDLINE | ID: mdl-34141903

ABSTRACT

BACKGROUND: Increasing healthcare costs need to be contained in order to maintain equality of access to care for all EU citizens. A cross-disciplinary consortium of experts was supported by the EU FP7 research programme, to produce a roadmap on cost containment, while maintaining or improving the quality of healthcare. The roadmap comprises two drivers: person-centred care and health promotion; five critical enablers also need to be addressed: information technology, quality measures, infrastructure, incentive systems, and contracting strategies. METHOD: In order to develop and test the roadmap, a COST Action project was initiated: COST-CARES, with 28 participating countries. This paper provides an overview of evidence about the effects of each of the identified enablers. Intersections between the drivers and the enablers are identified as critical for the success of future cost containment, in tandem with maintained or improved quality in healthcare. This will require further exploration through testing. CONCLUSION: Cost containment of future healthcare, with maintained or improved quality, needs to be addressed through a concerted approach of testing key factors. We propose a framework for test lab design based on these drivers and enablers in different European countries.

15.
Nurs Open ; 8(2): 927-935, 2021 03.
Article in English | MEDLINE | ID: mdl-33570304

ABSTRACT

AIM: To evaluate the effects of PCC in the form of structured telephone support on self-reported cardiac self-efficacy in patients with COPD. METHODS: We enrolled 105 patients, aged ≥50 years, admitted to hospital and diagnosed with COPD from January 2015 to November 2016. The patients received usual care or PCC via telephone added to usual care. The Swedish Cardiac Self-Efficacy Scale comprising three dimensions (control symptoms, control illness and maintain functioning) was used as outcome measure. Data was collected at baseline, and at 3- and 6-month follow-ups. RESULTS: At both the 3- and 6-month follow-ups, the intervention group improved significantly more than the control group in the control illness dimension (p = .012 and p = .032, respectively). No differences were found in the other two dimensions. CONCLUSIONS: PCC in the form of structured telephone support increases patients' confidence in managing their illness and may be a feasible strategy to support patients in their homes.


Subject(s)
Pulmonary Disease, Chronic Obstructive , Self Efficacy , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Patient-Centered Care , Pulmonary Disease, Chronic Obstructive/therapy , Sweden/epidemiology , Telephone
16.
PLoS One ; 15(11): e0241801, 2020.
Article in English | MEDLINE | ID: mdl-33226986

ABSTRACT

OBJECTIVE: The aim was to explore the experiences of a person-centred e-health intervention, in patients diagnosed with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF). DESIGN: Grounded theory was applied to gather and analyse data. SETTING: The study is part of a research project evaluating the effects of person-centred care (PCC) using a digital platform and structured telephone support for people with COPD or CHF recruited from nine primary care units in Sweden. PARTICIPANTS: Twelve patients from the intervention group were purposefully selected in accordance with the initial sampling criteria. INTERVENTION: The intervention was delivered through a digital platform and telephone support system for 6 months. The intervention relied on person-centred ethics operationalised through three core PCC components: patient narratives, partnership and shared documentation. RESULTS: A core category was formulated: Being welcomed through the side door when lacking the front door keys. The core category reflects how a PCC intervention delivered remotely provides access to mutual and informal meetings at times when professional contacts were desired to support patient self-management goals. According to patients' wishes, family and friends were seldom invited as care partners in the e-health context. CONCLUSIONS: A PCC intervention delivered remotely as a complement to standard care in a primary care setting for patients diagnosed with COPD or CHF is a viable approach to increase patients' access and involvement in preventive care. The e-health intervention seemed to facilitate PCC, strengthen patients' position in the health service system and support their self-management.


Subject(s)
Grounded Theory , Patient-Centered Care/methods , Aged , Aged, 80 and over , Chronic Disease , Female , Heart Failure , Humans , Male , Middle Aged , Primary Health Care/methods , Pulmonary Disease, Chronic Obstructive , Sweden , Telephone
17.
BMJ Open ; 10(10): e037323, 2020 10 29.
Article in English | MEDLINE | ID: mdl-33122312

ABSTRACT

IMPORTANCE: International efforts are being made towards a person-centred care (PCC) model, but there are currently no standardised mechanisms to measure and monitor PCC at a healthcare system level. The use of metrics to measure PCC can help to drive the changes needed to improve the quality of healthcare that is person centred. OBJECTIVE: To develop and validate person-centred care quality indicators (PC-QIs) measuring PCC at a healthcare system level through a synthesis of the evidence and a person-centred consensus approach to ensure the PC-QIs reflect what matters most to people in their care. METHODS: Existing indicators were first identified through a scoping review of the literature and an international environmental scan. Focus group discussions with diverse patients and caregivers and interviews with clinicians and experts in quality improvement allowed us to identify gaps in current measurement of PCC and inform the development of new PC-QIs. A set of identified and newly developed PC-QIs were subsequently refined by Delphi consensus process using a modified RAND/UCLA Appropriateness Method. The international consensus panel consisted of patients, family members, community representatives, clinicians, researchers and healthcare quality experts. RESULTS: From an initial 39 unique evidence-based PC-QIs identified and developed, the consensus process yielded 26 final PC-QIs. These included 7 related to structure, 16 related to process, 2 related to outcome and 1 overall global PC-QI. CONCLUSIONS: The final 26 evidence-based and person-informed PC-QIs can be used to measure and evaluate quality incorporating patient perspectives, empowering jurisdictions to monitor healthcare system performance and evaluate policy and practice related to PCC.


Subject(s)
Delivery of Health Care , Quality Indicators, Health Care , Delphi Technique , Health Facilities , Humans , Quality Improvement , Quality of Health Care
18.
BMJ Open ; 10(7): e036356, 2020 07 19.
Article in English | MEDLINE | ID: mdl-32690519

ABSTRACT

BACKGROUND: A core feature of chronic obstructive pulmonary disorder (COPD) and chronic heart failure (CHF) is that symptoms may change rapidly because of illness progression. Thus, these chronic conditions are associated with high rehospitalisation rates. Person-centred care (PCC) has been shown to have several benefits for patients with COPD or CHF (or both disorders) but it has not yet been investigated through e-health services. AIM: The project aims to evaluate the effects of PCC by a combined digital platform and structured telephone support for people with COPD and/or CHF. METHODS AND ANALYSIS: A randomised controlled trial with open, parallel groups which employs a participatory design process will be used. This project will also include process and health economic evaluation of the intervention. ETHICS AND DISSEMINATION: Ethical approval has been secured from the Regional Ethical Review Board in Gothenburg, Sweden (Dnr 063-17 and T063-18). Results will be presented at conferences and to healthcare professionals, participants and patient organisations. Findings will also be submitted for publication in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT03183817.


Subject(s)
Heart Failure , Pulmonary Disease, Chronic Obstructive , Chronic Disease , Heart Failure/therapy , Humans , Pulmonary Disease, Chronic Obstructive/therapy , Quality of Life , Sweden , Telephone
19.
Eur J Cardiovasc Nurs ; 19(4): 282, 2020 04.
Article in English | MEDLINE | ID: mdl-31996006
20.
Eur J Cardiovasc Nurs ; 19(5): 393-400, 2020 06.
Article in English | MEDLINE | ID: mdl-31782661

ABSTRACT

INTRODUCTION: Fatigue is a prevalent symptom that is associated with various conditions. In patients with chronic heart failure (CHF), fatigue is one of the most commonly reported and distressing symptoms and it is associated with disease progression. Person-centred care (PCC) is a fruitful approach to increase the patient's ability to handle their illness. AIM: The aim of this study was to evaluate the effects of PCC in the form of structured telephone support on self-reported fatigue in patients with CHF. METHOD: This study reports a subgroup analysis of a secondary outcome measure from the Care4Ourselves randomised intervention. Patients (n=77) that were at least 50 years old who had been hospitalized due to worsening CHF received either usual care (n=38) or usual care and PCC in the form of structured telephone support (n=39). Participants in the intervention group created a health plan in partnership with a registered nurse. The plan was followed up and evaluated by telephone. Self-reported fatigue was assessed using the Multidimensional Fatigue Inventory 20 (MFI-20) at baseline and at 6 months. Linear regression was used to analyse the change in MFI-20 score between the groups. RESULTS: The intervention group improved significantly from baseline to the 6-month follow-up compared with the control group regarding the 'reduced motivation' dimension of the MFI-20 (Δ -1.41 versus 0.38, p=0.046). CONCLUSION: PCC in the form of structured telephone support shows promise in supporting patients with CHF in their rehabilitation, improve health-related quality of life and reduce adverse events. TRIAL REGISTRATION: ISRCTN.com ISRCTN55562827.


Subject(s)
Fatigue/nursing , Heart Failure/nursing , Patient Education as Topic/methods , Patient-Centered Care/methods , Self Care/methods , Telemedicine/methods , Telephone , Aged , Aged, 80 and over , Chronic Disease/nursing , Female , Humans , Male , Randomized Controlled Trials as Topic
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