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).
Grounded ...theory was applied to gather and analyse data.
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.
Twelve patients from the intervention group were purposefully selected in accordance with the initial sampling criteria.
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.
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.
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.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
To evaluate the effects of person-centred support via telephone in two chronically ill patient groups, chronic obstructive pulmonary disease (COPD) and/or chronic heart failure (CHF).
221 patients ≥ ...50 years with COPD and/or CHF were randomized to usual care vs. usual care plus a person-centred telephone-support intervention and followed for six months. Patients in the intervention group were telephoned by a registered nurse initially to co-create a person-centred health plan with the patient and subsequently to discuss and evaluate the plan. The primary outcome measure was a composite score comprising General Self-Efficacy (GSE), re-hospitalization and death. Patients were classified as deteriorated if GSE had decreased by ≥ 5 points, or if they had been re-admitted to hospital for unscheduled reasons related to COPD and/or CHF or if they had died.
At six-month follow-up no difference in the composite score was found between the two study groups (57.6%, n = 68 vs. 46.6%, n = 48; OR = 1.6, 95% CI: 0.9-2.7; P = 0.102) in the intention-to-treat analysis (n = 221); however, significantly more patients in the control group showed a clinically important decrease in GSE (≥ 5 units) (22.9%, n = 27 vs. 9.7%, n = 10; OR = 2.8, 95% CI: 1.3-6.0; P = 0.011). There were 49 clinical events (14 deaths, 35 re-admissions) in the control group and 41 in the intervention group (9 deaths, 32 re-admissions). Per-protocol analysis (n = 202) of the composite score showed that more patients deteriorated in the control group than in the intervention group (57.6%, n = 68 vs. 42.9%, n = 36; OR = 1.8, 95% CI 1.0-3.2; P = 0.039).
Person-centred support via telephone mitigates worsening self-efficacy without increasing the risk of clinical events in chronically ill patients with CHF and/or COPD. This indicates that a patient-healthcare professional partnership may be established without the need for face-to-face consultations, even in vulnerable patient groups.
ISRCTN.com ISRCTN55562827.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Abstract
Background
In order to understand pathways of complex interventions, the Medical Research Council has suggested that process evaluations should be conducted alongside randomised controlled ...trials (RCTs). This paper presents a mixed methods process evaluation of a complex, person-centred eHealth intervention for persons on sick leave with common mental disorders.
Aim
The aim of the study was to explore participants’ experiences of a person-centred eHealth intervention and illuminate meaningful activities and processes.
Methods
Participants were recruited from the intervention arm of an RCT (n = 102). Questionnaires on perceived meaningfulness of the overall intervention and intervention activities were sent to participants on two occasions, after 3 and 6 months, and semi-structured interviews were conducted with a purposeful sample of 15 participants in the intervention group. Questionnaire data were analysed using descriptive statistics, and interview data were analysed using qualitative content analysis. The quantitative and qualitative data strands were integrated at interpretation.
Results
At both follow-ups, a majority of participants reported that the intervention was fully or partly meaningful and that the most meaningful activity was the phone calls with health care professionals working in the intervention. In the qualitative analysis, three categories describing participants’ experiences of the intervention were formed:
Acknowledgment in a disconcerting situation
,
Finding ways forward
and
Unmet expectations
. A synthesis of quantitative and qualitative findings resulted in the overarching theme of meaningfulness as constituted by
a lowered threshold to partnerships: support within reach, when needed
.
Conclusion
Experiences of meaningfulness of the intervention were constituted by a lowered threshold to forming care partnerships, in which support was within reach, when needed. If the content of the intervention was not in accordance with individuals’ needs or expectations, access alone did not suffice to constitute meaningfulness.
Trial registration
ClinicalTrials.gov; NCT03404583; 19/01/2018.
Celotno besedilo
Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
ObjectiveTo evaluate the content and usability of a new direct observation tool for assessing competency in delivering person-centred care based on the Gothenburg Centre for Person-Centred Care ...(gPCC) framework.DesignThis is a qualitative study using think-aloud techniques and retrospective probing interviews and analyzed using deductive content analysis.SettingSessions were conducted remotely via Zoom with participants in their homes or offices.Participants11 participants with lengthy experience of receiving, delivering and/or implementing gPCC were recruited using purposeful sampling and selected to represent a broad variety of stakeholders and potential end-users.ResultsParticipants generally considered the content of the four main domains of the tool, that is, person-centred care activities, clinician manner, clinician skills and person-centred care goals, to be comprehensive and relevant for assessing person-centred care in general and gPCC in particular. Some participants pointed to the need to expand person-centred care activities to better reflect the emphasis on eliciting patient resources/capabilities and psychosocial needs in the gPCC framework. Think-aloud analyses revealed some usability issues primarily regarding difficulties or uncertainties in understanding several words and in using the rating scale. Probing interviews indicated that these problems could be mitigated by improving written instructions regarding response options and by replacing some words. Participants generally were satisfied with the layout and structure of the tool, but some suggested enlarging font size and text spacing to improve readability.ConclusionThe tool appears to satisfactorily cover major person-centred care activities outlined in the gPCC framework. The inclusion of content concerning clinician manner and skills was seen as a relevant embellishment of the framework and as contributing to a more comprehensive assessment of clinician performance in the delivery of person-centred care. A revised version addressing observed content and usability issues will be tested for inter-rater and intra-rater reliability and for feasibility of use in healthcare education and quality improvement efforts.
The interplay of ethical stress, heavy workloads, and job dissatisfaction poses challenges to both the recruitment and retention of health and social care professionals. Person-centred care, rooted ...in ethical principles, involves collaborative care, and is expected to improve care and job satisfaction. However, prior research on the impact of person-centred care practices on professionals' work-related health and job satisfaction has yielded mixed results, and most studies emanate from residential care. Understanding how person-centred care practices influence health and social care professionals across different care settings thus requires further exploration through rigorous methodology. The overall aim of PCC@Work is to follow, describe, assess, and explore the impact of person-centred care practices in hospital wards, primary care centres and municipal care on health and social care professionals' work-related health and job satisfaction.
PCC@Work is designed as a prospective, longitudinal cohort study combined with qualitative studies. A web-based questionnaire will be distributed on five occasions within two years to health and social care professionals in the three care settings. In addition, focus groups and interviews will be conducted with a selection of health and social care professionals to explore their experiences of work-related health and job satisfaction in relation to person-centred practices.
PCC@Work will highlight some of the knowledge gaps on the impact of person-centred care practices regarding work-related health and job satisfaction of health and social care professionals. The uniqueness of the project lies in the multi-method design, combining a prospective longitudinal cohort study with qualitative studies, and the involvement of various professions and settings. This means we will be able to provide a comprehensive and representative understanding of person-centred care practices as a critical component for effective change in the working conditions of health and social care.
Celotno besedilo
Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
IntroductionMental illness is a major concern in many countries. In Sweden, stress-related mental illness is currently the most frequent reason for sick leave.ObjectiveThis study aimed to explore ...patients’ experiences of stress-related exhaustion.DesignA qualitative study with interview data analysed using a phenomenological hermeneutic method.SettingParticipants were selected from public primary healthcare centres in a larger city in western Sweden.ParticipantsSeven women and five men on sick leave from work due to stress-related exhaustion were included in the study.FindingsStress-related exhaustion was experienced as a loss of access to oneself and one’s context and feelings of being trapped and lost in life. The condition had a significant impact on personal identity, raised existential issues and was interpreted as facing a blind alley. Participants described a mistaken direction in life, being forced to stop, change direction and act differently.ConclusionStress-related exhaustion is a challenging, life-changing existential experience that involves a crisis with an opportunity for new insights. Careful consideration of patients’ narratives together with the expertise of healthcare professionals can be combined to improve health and optimise recovery based on individual’s situation.
ObjectiveTo identify key observable indicators of person-centred care (PCC) from interviews with patients, relatives and professionals with experience of receiving or working with PCC.DesignA ...qualitative interview study using deductive content analysis.SettingPrimary and hospital care settings in Western Sweden.ParticipantsTwelve participants with extensive experience of receiving or working with PCC were interviewed: two patients, two patients representative with long-term conditions, one relative and informal carer, three registered nurses, one physician, two occupational therapists and one social worker/researcher.ResultsNine observable indicators were identified and subsumed under three predetermined categories: initiating, working and safeguarding the partnership. The first category comprised three subcategories: welcoming, interested and courteous reception; agreeing on structure and aims of the conversation; and eliciting patients’ wishes for involvement of significant others. The second category comprised four subcategories: attentive, empathic and encouraging manner; promoting mutual understanding; promoting patient engagement; and encouraging and friendly body language. The last category consisted of two subcategories: collaboration and transparency in documentation and verifying that patient’s and professional’s views, goals and wants are correctly documented.ConclusionOur results underline the need for health professionals to actively and conscientiously convey to patients their interest in and respect for the patient as a person and their willingness to collaborate as partners in their care from the very outset of the interaction. Non-verbal behaviours were seen to play a major role in shaping patients’ impressions of health professionals. Given that patients’ first impressions were considered to impact the content, course and outcomes of the interaction, more research attention should be given to their implications for the effective delivery of PCC.
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.
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.
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).
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.
Celotno besedilo
Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Introduction
Narratives play a central part in person‐centred care (PCC) as a communicative means of attending to patients' experiences. The present study sets out to explore what activities are ...performed and what challenges participants face in the interactive process of narrative elicitation, carried through in patient‐professional communication in a remote intervention based on PCC.
Methods
Data were gathered from a randomized controlled trial (RCT) in a Swedish city where health care professionals (HCPs) conducted remote PCC for patients on sick leave due to common mental disorders. A sample of eleven audio‐recorded phone conversations between HCPs and patients enroled in the RCT were collected and subjected to conversation analysis.
Results
Three interactive patterns in narrative elicitation were identified: Completed narrative sequences driven by the patient, question‐driven narrative sequences guided by the HCP, and narrative sequences driven as a collaborative project between the patient and the HCP. In the question‐driven narrative sequences, communication was problematic for both participants and they did not accomplish a narrative. In the other two patterns, narratives were accomplished but through various collaborative processes.
Conclusion
This study provides insight into what challenges narrative elicitation may bring in the context of a remote PCC intervention and what interactive work patients and HCP need to engage in. Importantly, it also highlights tensions in the ethics of PCC and its operationalization, if the pursuit of a narrative is not properly balanced against the respect for patients' integrity and personal preferences. Our findings also show that narrative elicitation may represent an interactive process in PCC in which illness narratives are jointly produced, negotiated and transformed.
Patient or Public Contribution
Stakeholders, including patient representatives, were involved in the design of the main study (the RCT). They have been involved in discussions on research questions and dissemination throughout the study period. They have not been involved in conducting the present study.
ObjectivesThis qualitative systematic review aimed to explore and synthesise healthcare professionals’ (HCPs) experiences of job satisfaction when providing person-centred care (PCC) in healthcare ...settings in Europe.MethodThis systematic review of qualitative studies was followed by a thematic synthesis applying an inductive approach. Studies concerning HCPs and different levels of healthcare in Europe were eligible for inclusion. The CINAHL, PubMed and Scopus databases were searched. Study titles, abstracts and full texts were screened for relevance. Included studies were assessed for methodological quality using a quality appraisal checklist. Data were extracted and synthesised via thematic synthesis, generating analytical themes.ResultsSeventeen studies were included in the final thematic synthesis, and eight analytical themes were derived. Most studies were conducted in Sweden and the UK and were performed in hospitals, nursing homes, elderly care and primary care. Thirteen of these studies were qualitative and four used a mixed-method design in which the qualitative part was used for analysis. HCPs experienced challenges adapting to a new remoulded professional role and felt torn and inadequate due to ambiguities between organisational structures, task-oriented care and PCC. Improved job satisfaction was experienced when providing PCC in line with ethical expectations, patients and colleagues expressed appreciation and team collaboration improved, while learning new skills generated motivation.ConclusionThis systematic review found varied experiences among HCPs. Notably, the new professional role was experienced to entail disorientation and uncertainty; importantly, it also entailed experiences of job satisfaction such as meaningfulness, an improved relationship between HCPs and patients, appreciation and collaboration. To facilitate PCC implementation, healthcare organisations should focus on supporting HCPs through collaborational structures, and resources such as time, space and staffing.PROSPERO registration numberCRD42022304732.
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