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Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: A focus group study.

ABSTRACT: PURPOSE:The aim of this study was to explore the experiences, needs, and preferences regarding follow-up perceived by people with stroke and healthcare professionals. METHODS:This is a qualitative exploratory study using focus groups. Patients and healthcare professionals, participating in a clinical visit in primary care or specialised care, were purposively sampled. Data were analysed using a framework of analysis developed by Krueger. RESULTS:Focus groups were conducted with two patient groups (n = 10, range 45-78 years) and two multidisciplinary healthcare professional groups (n = 8, range 35-55 years). The overarching theme elucidates stroke as a long-term condition requiring complex follow-up. Three organisational themes and six subthemes were identified. People with stroke discovered feelings and changes after returning home. In daily life, problems and feelings of abandonment became evident. Participants expressed experiences of unequal access to health care services. Barriers for accessing appropriate treatment and support included difficulties in communicating one's needs and lack of coherent follow-up. Follow-up activities were well functioning in certain clinics but did not provide continuity over the long term. Participants made suggestions for a comprehensive, planned, and tailored follow-up to meet patient needs. CONCLUSION:Comprehensive long-term follow-up that is accessible to all patients is essential for equal support. Our findings raised awareness about problems discovered after returning home and the obstacles individuals face in communicating their needs. Structured follow-up, which is individually tailored, can empower patients.

SUBMITTER: Kjork EK

PROVIDER: S-EPMC6772122 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: A focus group study.

Kjörk Emma K EK Gunnel Carlsson C Lundgren-Nilsson Åsa Å Sunnerhagen Katharina S KS

PloS one 20191001 10

<h4>Purpose</h4>The aim of this study was to explore the experiences, needs, and preferences regarding follow-up perceived by people with stroke and healthcare professionals.<h4>Methods</h4>This is a qualitative exploratory study using focus groups. Patients and healthcare professionals, participating in a clinical visit in primary care or specialised care, were purposively sampled. Data were analysed using a framework of analysis developed by Krueger.<h4>Results</h4>Focus groups were conducted ...[more]

PMID: 31574135

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Project description:BackgroundThe Emergency Department (ED) is not always the optimal place for people with palliative care needs but is the most common route for treatment when urgent care is sought. The aim of this study,''REasons for PalLIative Care Admissions (REPLICA)' was to explore the perspectives of ED healthcare professionals of hospital admission or discharge via ED for palliative care patients.MethodsThis is a sequential mixed methods study comprising (i) quantitative descriptive analysis of Hospital Episode Statistics (HES) of palliative care patients (code Z51.5) who were admitted through ED in a West Midlands Hospital and for the rest of England; (ii) in-depth semi-structured interviews with 17 ED staff which were analysed using thematic content analysis.ResultsOver the four years (2013-2017), 430,116 people admitted through ED were identified with a Z51.5 diagnosis code, 0.6% (n = 2736) of whom were from the West Midlands Hospital. The most common reasons for palliative care patients' admission to hospitals across England were for care of chronic kidney disease, cancers and urinary tract infections. Five themes were elicited from the qualitative analysis: (1) Providing palliative care in ED is challenging, due to factors including lack of training in palliative care and the unsuitable environment. (2) Patients go to ED due to challenges in community management such as inappropriate referrals and no care plan in place. (3) Health system influences admission and discharge decisions, including bed availability and being unable to set up community services out-of-hours. (4) Discussion with patient about treatment and end of life care needs to be outside of ED whilst the patient is still well enough to express their wishes. (5) Improving services for patients with palliative care needs. Recommendations include short training sessions for ED staff and accessing palliative care professionals 24/7.ConclusionsA large number of palliative care patients visit ED and are admitted to hospital for care; there is an urgent need to prevent patients attending the hospital through the establishment of a coordinated and dedicated service to support palliative care patients in the community.

Project description:ObjectivesBreast cancer survivors experience a wide spectrum of physical sequelae from cancer treatment. National and international guidelines recommend that rehabilitation is offered from the point of diagnosis. However, there is a lack of data on the translation of these recommendations into clinical care. The objective of this study was to explore the experiences of breast cancer survivors, rehabilitation professionals and breast surgeons on current rehabilitation services including preferences for care delivery, specific ways to promote early detection and timely management of upper body issues and attitudes towards self-managed surveillance and rehabilitation.DesignQualitative focus groups. Breast cancer survivors completed a questionnaire about rehabilitation services received and experience of upper body issues. These quantitative data were collected to provide context for the qualitative data and increase transferability. Transcripts were analysed using content analysis.SettingFive geographically distinct health authorities in British Columbia, Canada.ParticipantsEleven focus groups were conducted with 35 breast cancer survivors, 29 rehabilitation professionals and 5 breast surgeons.ResultsThree categories captured participants' concern and wish for improved care: (1) cut the cancer out and goodbye; (2) you have to look out for yourself and (3) in a perfect world. All breast cancer survivors reported chronic upper body issues (mean 4.5 unique issues). Breast cancer survivors expressed worry and uncertainty in their solo management of the rehabilitation. The current services were reported to not enable early detection and timely management. Suggestions included reorganising the timing of patient education and improving the quality of and access to rehabilitation services by elevating the knowledge among healthcare professionals and providing multimodal self-management resources.ConclusionsThe results revealed a gap between oncology guidelines and the current clinical reality. The rehabilitation services were reported in need of revamping to increase equity of care. Multiple upper body issues were reported by many breast cancer survivors.

Project description:BackgroundRecent studies indicate inadequate nutritional care practices in healthcare institutions and identify several barriers to perform individualized nutritional care to older persons. Organisation of care can become rigid and standardised, thus failing to be respectful of and responsive to each person's needs and preferences. There is limited research exploring health professionals' views on how structure of care allows them to individualize nutritional care to older persons. In this study we aim to explore how healthcare professionals' experience providing individualised nutritional care within the organisational frames of acute geriatric hospital care and home care.MethodsSemi-structured interviews with 23 healthcare professionals from hospital acute geriatric care and home care. Interviews were analyzed using thematic analysis.ResultsTwo main themes and six sub-themes emerged from the material. Theme 1: 'Meeting patients with complex nutritional problems' with the sub-themes: 'It is much more complex than just not eating' and 'seeing nutrition as a part of the whole'. Theme 2: 'The structure of the nutritional care', with the sub-themes: 'Nutritional routines: Much ado, but for what?', 'lack of time to individualize nutritional care', 'lack of interdisciplinary collaboration in nutritional care' and 'meeting challenging situations with limited resources in home care'.ConclusionsThe healthcare professionals described having a high focus on and priority of nutritional care when caring for older persons. They did however find it challenging to practice individualized nutritional care due to the complexity of the patients' nutritional problems and constraints in the way nutritional care was organised. By describing the challenges the healthcare professionals face when trying to individualize the nutritional care, this study may provide important knowledge to health professionals and policy makers on how to decrease the gap between older patients' preferences for care and nutritional care practice.

Project description:BackgroundStroke is a leading cause of disability among adults, with heavy social and economic burden worldwide. A cost-effective solution is urgently needed to facilitate the identification of individual rehabilitation needs and thereby provide tailored rehabilitations to reduce disability among people who have had a stroke. A novel digital graphic follow-up tool Rehabkompassen has recently been developed to facilitate capturing the multidimensional rehabilitation needs of people who have had a stroke.ObjectiveThe aim of this study was to evaluate the feasibility and acceptability of conducting a definitive trial to evaluate Rehabkompassen as a digital follow-up tool among people who have had a stroke in outpatient clinical settings.MethodsThis pilot study of Rehabkompassen was a parallel, open-label, 2-arm prospective, proof-of-concept randomized controlled trial (RCT) with an allocation ratio of 1:1 in a single outpatient clinic. Patients who have had a stroke within the 3 previous months, aged ≥18 years, and living in the community were included. The trial compared usual outpatient visits with Rehabkompassen (intervention group) and without Rehabkompassen (control group) at the 3-month follow-up as well as usual outpatient visit with Rehabkompassen at the 12-month follow-up. Information on the recruitment rate, delivery, and uptake of Rehabkompassen; assessment and outcome measures completion rates; the frequency of withdrawals; the loss of follow-up; and satisfaction scores were obtained. The key outcomes were evaluated in both groups.ResultsIn total, 28 patients (14 control, 14 Rehabkompassen) participated in this study, with 100 patients screened. The overall recruitment rate was 28% (28/100). Retention in the trial was 86% (24/28) at the 12-month follow-up. All participants used the tool as planned during their follow-ups, which provided a 100% (24/24) task completion rate of using Rehabkompassen and suggested excellent feasibility. Both patient- and physician-participants reported satisfaction with the instrument (19/24, 79% and 2/2, 100%, respectively). In all, 2 (N=2, 100%) physicians and 18 (N=24, 75%) patients were willing to use the tool in the future. Furthermore, modified Rankin Scale as the primary outcome and various stroke impacts as secondary outcomes were both successfully collected and compared in this study.ConclusionsThis study demonstrated the high feasibility and adherence of the study protocol as well as the high acceptability of Rehabkompassen among patients who have had a stroke and physicians in an outpatient setting in comparison to the predefined criterion. The information collected in this feasibility study combined with the amendments of the study protocol may improve the future definitive RCT. The results of this trial support the feasibility and acceptability of conducting a large definitive RCT.Trial registrationClinicalTrials.gov NCT04915027; https://clinicaltrials.gov/ct2/show/NCT04915027.

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Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: A focus group study.

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Experiences, needs, and preferences for follow-up after stroke perceived by people with stroke and healthcare professionals: A focus group study.

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