Experiences of stroke survivors and measurement of post stroke participation and activity across seasons—A mixed methods approach
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SUBMITTER: Barclay R
PROVIDER: S-EPMC8555779 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Objective: To understand the reason for low implementation of clinical and home-based rehabilitation robots and their potential. Design: Online questionnaire (November 2020 and February 2021). Subjects: A total of 100 professionals in stroke rehabilitation area were involved (Physiotherapists n = 62, Occupation therapists n = 35). Interventions: Not applicable. Main Measures: Descriptive statistics and thematic content analysis were used to analyze the responses: 1. Participants' details, 2. Professionals' views and experience of using clinical rehabilitation robots, 3. Professionals' expectation and concerns of using home-based rehabilitation robots. Results: Of 100 responses, 37 had experience of rehabilitation robots. Professionals reported that patients enjoyed using them and they increased accessibility, autonomy, and convenience especially when used at home. The main emergent themes were: "aims and objectives for rehabilitation robotics," "requirements" (functional, software, and safety), "cost," "patient factors" (contraindications, cautions, and concerns), and "staff issues" (concerns and benefits). The main benefits of rehabilitation robots were that they provided greater choice for therapy, increased the amount/intensity of treatment, and greater motivation to practice. Professionals perceived logistical issues (ease of use, transport, and storage), cost and limited adaptability to patients' needs to be significant barriers to tier use, whilst acknowledging they can reduce staff workload to a certain extent. Conclusion: The main reported benefit of rehabilitation robots were they increased the amount of therapy and practice after stroke. Ease of use and adaptability are the key requirements. High cost and staffing resources were the main barriers.
| S-EPMC8757825 | biostudies-literature
Project description:Stroke survivors encounter significant limitations in daily life activities and face increased risk of health complications such as stroke recurrence. Considering the escalating demand for personalised community rehabilitation services, this qualitative study was conducted to understand the current recovery experiences, needs, and expectations of community-dwelling stroke survivors. Fifty stroke survivors were recruited from two tertiary teaching hospitals and community centres in two provinces in mainland China. Semi-structured interviews were carried out, and participants were asked to describe their experiences of stroke, current lifestyles, exercise habits, and rehabilitation needs and expectations. Resulting data were thematically analysed. The majority of participants were first-time stroke survivors (80%) and lived with their family or caregivers (92%). Four main themes and twelve sub-themes emerged from the data: (1) shifts in social life, (2) shaken sense of self and perceived helplessness, (3) complex rehabilitation needs, and (4) perceptions and patterns of physical activity. Findings suggest that though survivors recognised their need for further rehabilitation, their demands remained unmet due to a combination of personal and external factors such as limited mobility and the absence of supportive companions and accessible facilities. The enhancement and diversification of home rehabilitation strategies are therefore necessary to make community rehabilitation more accessible and equitable.
| S-EPMC9741278 | biostudies-literature
Project description:BackgroundWearable devices permit the continuous, unobtrusive collection of data from children in their natural environments and can transform our understanding of child development. Although the use of wearable devices has begun to emerge in research involving children, few studies have considered families' experiences and perspectives of participating in research of this kind.ObjectiveThrough a mixed methods approach, we assessed parents' and children's experiences of using a new wearable device in the home environment. The wearable device was designed specifically for use with infants and young children, and it integrates audio, electrocardiogram, and motion sensors.MethodsIn study 1, semistructured phone interviews were conducted with 42 parents of children aged 1 month to 9.5 years who completed 2 day-long recordings using the device, which the children wore on a specially designed shirt. In study 2, a total of 110 parents of children aged 2 months to 5.5 years responded to a questionnaire assessing their experience of completing 3 day-long device recordings in the home. Guided by the Digital Health Checklist, we assessed parental responses from both studies in relation to the following three key domains: (1) access and usability, (2) privacy, and (3) risks and benefits.ResultsIn study 1, most parents viewed the device as easy to use and safe and remote visits as convenient. Parents' views on privacy related to the audio recordings were more varied. The use of machine learning algorithms (vs human annotators) in the analysis of the audio data, the ability to stop recordings at any time, and the view that the recordings reflected ordinary family life were some reasons cited by parents who expressed minimal, if any, privacy concerns. Varied risks and benefits were also reported, including perceived child comfort or discomfort, the need to adjust routines to accommodate the study, the understanding gained from the study procedures, and the parent's and child's enjoyment of study participation. In study 2, parents' ratings on 5 close-ended items yielded a similar pattern of findings. Compared with a "neutral" rating, parents were significantly more likely to agree that (1) device instructions were helpful and clear (t109=-45.98; P<.001), (2) they felt comfortable putting the device on their child (t109=-22.22; P<.001), and (3) they felt their child was safe while wearing the device (t109=-34.48; P<.001). They were also less likely to worry about the audio recordings gathered by the device (t108=6.14; P<.001), whereas parents' rating of the burden of the study procedures did not differ significantly from a "neutral" rating (t109=-0.16; P=.87).ConclusionsOn the basis of parents' feedback, several concrete changes can be implemented to improve this new wearable platform and, ultimately, parents' and children's experiences of using child wearable devices in the home setting.
| S-EPMC10884896 | biostudies-literature
Project description:BackgroundSurvivors of stroke are often deconditioned and have limited opportunities for exercise post-rehabilitation. Cardiac Rehabilitation (CR), a structured exercise program offered post-cardiac event in the United States (U.S.), may provide an opportunity for continued exercise. The purpose of this study was to examine the feasibility of integrating survivors of stroke into an existing, hospital-based CR program through an assessment of (1) recruitment, uptake and retention, (2) adherence and fidelity, (3) acceptability and (4) safety.MethodsA mixed methods design combined a single group, pre-post design, pilot feasibility study with an imbedded qualitative inquiry. Survivors of stroke were recruited into a standard 12-week, 36 visit CR program.ResultsFifty-three survivors were referred, 29 started and 24 completed the program. Program uptake rate was 55% and completion rate was 83%. Eleven completers and one non-completer participated in the qualitative interviews. Program completers attended an average of 25.25 (SD 5.82) sessions with an average of 38.93 (SD 5.64) exercise minutes per session while reaching targeted rate of perceived exertion levels. Qualitative themes included perceived benefits of an individualized program in a group setting, positive interactions with qualified staff, opportunities for socialization, and regular monitoring and staff attentiveness promoting feelings of safety.ConclusionsSurvivors of stroke were able to meet Medicare standard dosage (frequency and session duration) and rate of perceived intensity goals, and perceived the program as needed regardless of their mobility limitations or previous exercise experience. Primary challenges included managing referrals and uptake. Results support feasibility and benefit for survivors to integrate into U.S. CR programs.
| S-EPMC8007047 | biostudies-literature
Project description:BackgroundKnowledge on long-term participation is scarce for patients with paid employment at the time of stroke.ObjectiveDescribe the characteristics and the course of participation (paid employment and overall participation) in patients who did and did not remain in paid employment.MethodsPatients with paid employment at the time of stroke completed questions on work up to 30 months after starting rehabilitation, and the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P, Frequency, Restrictions and Satisfaction scales) up to 24 months. Baseline characteristics of patients with and without paid employment at 30 months were compared using Fisher's Exact Tests and Mann-Whitney U Tests. USER-P scores over time were analysed using Linear Mixed Models.ResultsOf the 170 included patients (median age 54.2 interquartile range 11.2 years; 40% women) 50.6% reported paid employment at 30 months. Those returning to work reported at baseline more working hours, better quality of life and communication, were more often self-employed and in an office job. The USER-P scores did not change statistically significantly over time.ConclusionAbout half of the stroke patients remained in paid employment. Optimizing interventions for returning to work and achieving meaningful participation outside of employment seem desirable.
| S-EPMC10977381 | biostudies-literature
Project description:ObjectivesTo investigate the current status of participation and explore the characteristics of individuals with different levels of participation among stroke survivors in mainland China.DesignCross-sectional survey.SettingParticipants were recruited by convenience sampling from the neurology department of the tertiary hospitals and communities.SubjectsStroke survivors (N = 517; mean (±SD) age, 69.97±11.51 y; 36.8% female).InterventionNot applicable.Main outcome measuresParticipation was measured using the Chinese version of the Impact on Participation and Autonomy Questionnaire (IPA). Rating of disability was assessed using the Modified Rankin Scale (mRS). The Perceived Social Support Scale (PSSS), the Medical Coping Modes Questionnaire (MCMQ), and the Herth Hope Scale (HHS) were also employed to measure social support, coping strategy, and hope of stroke survivors. The latent profiles analysis (LPA) was conducted using the Mplus version 8.3.ResultsThe mean score of participation was 41.21±21.204. Participants were divided into three groups according to the participation using the LPA. The mean score on the sum of IPA for the high, medium, and low participation groups was 18.93±8.529, 42.50±8.302, and 69.44±9.516, respectively.ConclusionsStroke survivors have a low level of participation. Stroke survivors with low income, high mRS stage, bad health condition, and being dissatisfied for life tended to have low participation. Healthcare professionals should pay special attention to them and make targeted interventions based on their characteristics.
| S-EPMC7774852 | biostudies-literature
Project description:BackgroundTransdisciplinary approaches can streamline processes and build workforce capacity by blurring traditional responsibilities and integrating aspects of care. Emerging evidence shows transdisciplinary approaches can improve time-efficiency, quality of care and cost-effectiveness across various healthcare settings, however no empirical study is based on an acute stroke unit.MethodsThe SPIRIT checklist was used to guide the content of the research protocol. The study is a pragmatic pre-/post- mixed methods four-phase study with a 3-month follow up, based at the Mater Hospital Brisbane. Participants experiencing stroke symptoms will be recruited as they are admitted to the acute stroke unit. Patients presenting with mild stroke symptoms or Transient Ischaemic Attack will be allocated to Phase 1 (baseline) or Phase 2 (implementation), while patients presenting with moderate to severe stroke symptoms will be allocated to Phase 3 (baseline) or Phase 4 (implementation). Participants in baseline Phases 1 and 3 will receive standard allied health assessment, while participants in implementation Phases 2 and 4 will receive the novel transdisciplinary assessment. For the primary aim, allied health professionals will time their assessments to evaluate time taken to administer a novel transdisciplinary assessment, compared to usual discipline-specific assessments. Non-inferiority of the novel transdisciplinary assessment will also be explored in terms of patient safety, compliance to national standards, use of the assessment, and stakeholder perceptions. A retrospective medical record audit, staff focus group, patient/staff surveys, and patient phone interviews at 3-months will be completed. Quantitative results will be estimated using general linear and logistic regression models in Stata 15.1. Qualitative results will be analysed using frequency counts and NVivo software. An economic evaluation will be performed using three scopes including the allied health assessment, hospital admission, and patient outcomes at 3-months.DiscussionWhen designing the study, pragmatic factors related to staff willingness to be involved, patient safety, and existing clinical pathways/processes were considered. To address those factors, a co-design approach was taken, resulting in staff buy-in, clinically relevant outcome measures, and the pre-/post- four-phase study design.Trial registrationAustralian New Zealand Clinical Trials Registry (ANZCTR), ACTRN12621000380897. Registered 06 April 2021 - retrospectively registered, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=381339&isReview=true.
| S-EPMC9789550 | biostudies-literature
Project description:New models of primary care include patient-reported outcome measures (PROMs) to promote patient-centered care. PROMs provide information on patient functional status and well-being, can be used to enhance care quality, and are proposed for use in assessing performance. Our objective was to identify a short list of candidate PROMs for use in primary care practice and to serve as a basis for performance measures (PMs). We used qualitative and quantitative methods to identify relevant patient-reported outcome (PRO) domains for use in performance measurement (PRO-PM) and their associated PROMs. We collected data from key informant groups: patients (n = 13; one-on-one and group interviews; concept saturation analysis), clinical thought leaders (n = 9; group discussions; thematic analysis), primary care practices representatives (n = 37; six focus groups; thematic analysis), and primary care payer representatives (n = 10; 12-question survey; frequencies of responses). We merged the key informant group information with findings from environmental literature scans. We conducted a targeted evidence review of measurement properties for candidate PROMs. We used a scoping review and key informant groups to identify PROM evaluation criteria, which were linked to the National Quality Forum measure evaluation criteria. We developed a de novo schema to score candidate PROMs against our criteria. We identified four PRO domains and 10 candidate PROMs: 3 for depressive symptoms, 2 for physical function, 3 for self-efficacy, 2 for ability to participate. Five PROMs met ≥ 70% of the evidence criteria for three PRO domains: PHQ-9 or PROMIS Depression (depression), PF-10 or PROMIS-PF (physical functioning), and PROMIS Self-Efficacy for Managing Treatments and Medications (self-efficacy). The PROMIS Ability to Participate in Social Roles and Activities met 68% of our criteria and might be considered for inclusion. Existing evidence and key informant data identified 5 candidate PROMs to use in primary care. These instruments can be used to develop PRO-PMs.
| S-EPMC7459066 | biostudies-literature
Project description:BackgroundInternet and social media platforms offer insights into the lived experiences of survivors of cancer and their caregivers; however, the volume of narrative data available is often cumbersome for thorough analysis. Survivors of gynecological cancer have unique needs, such as those related to a genetic predisposition to future cancers, impact of cancer on sexual health, the advanced stage at which many are diagnosed, and the influx of new therapeutic approaches.ObjectiveThis study aimed to present a unique methodology to leverage large amounts of data from internet-based platforms for mixed methods analysis. We analyzed discussion board posts made by survivors of gynecological cancer on the American Cancer Society website with a particular interest in evaluating the psychosocial aspects of survivorship.MethodsAll posts from the ovarian, uterine, and gynecological cancers (other than ovarian and uterine) discussion boards on the American Cancer Society Cancer Survivors Network were included. Posts were web scraped using Python and organized by psychosocial themes described in the Quality of Cancer Survivorship Care Framework. Keywords related to each theme were generated and verified. Keywords identified posts related to the predetermined psychosocial themes. Quantitative analysis was completed using Python and R Foundation for Statistical Computing packages. Qualitative analysis was completed on a subset of posts as a proof of concept. Themes discovered through latent Dirichlet allocation (LDA), an unsupervised topic modeling technique, were assessed and compared with the predetermined themes of interest.ResultsA total of 125,498 posts made by 6436 survivors of gynecological cancer and caregivers between July 2000 and February 2020 were evaluated. Of the 125,489 posts, 23,458 (18.69%) were related to the psychosocial experience of cancer and were included in the mixed methods psychosocial analysis. Quantitative analysis (23,458 posts) revealed that survivors across all gynecological cancer discussion boards most frequently discussed the role of friends and family in care, as well as fatigue, the effect of cancer on interpersonal relationships, and health insurance status. Words related to psychosocial aspects of survivorship most often used in posts included "family," "hope," and "help." Qualitative analysis (20 of the 23,458 posts) similarly demonstrated that survivors frequently discussed coping strategies, distress and worry, the role of family and caregivers in their cancer care, and the toll of managing financial and insurance concerns. Using LDA, we discovered 8 themes, none of which were directly related to psychosocial aspects of survivorship. Of the 56 keywords identified by LDA, 2 (4%), "sleep" and "work," were included in the keyword list that we independently devised.ConclusionsWeb-based discussion platforms offer a great opportunity to learn about patient experiences of survivorship. Our novel methodology expedites the quantitative and qualitative analyses of such robust data, which may be used for additional patient populations.
| S-EPMC9533206 | biostudies-literature
Project description:BACKGROUND:A coordinated stroke rehabilitation care team is considered optimal for supporting stroke survivors from diagnosis to recovery. Despite this recognition, many stroke survivors cannot access essential rehabilitation services. Furthermore, there is a lack of understanding of stroke patients' and their caregivers' rehabilitation needs and wishes. We sought to gain insight into healthcare and social structures from the perspective of patients and caregivers that can better support long-term stroke recovery. METHODS:We conducted individual interviews with 24 participants comprised of stroke survivors, spousal caregivers, stroke support group coordinators, and speech pathologist. Participants were recruited through three stroke survivor support groups. An empowerment lens was integrated into data analysis and data interpretation. RESULTS:Two dominant themes captured participants' experiences through stroke survivors' trajectory of care. 1) Experiences of managing stroke. This theme identified stroke survivors and spousal caregivers' experiences with stroke recovery, rehabilitation, and fulfilling unmet needs. 2) Resources of support. This theme described the social and financial support structures drawn upon to assist with stroke rehabilitation. CONCLUSIONS:The study highlighted a lack of teamwork between stroke survivors, spousal caregivers, and health professionals. This fragmented care was compounded by inequities in rehabilitation programs and health services resulting in what appeared to be a disempowering rehabilitation process. Although stroke recovery groups were a significant source of support for stroke survivors and spousal caregivers, participants perceived they were overlooked, by stroke recovery healthcare providers, as a site for stroke recovery healthcare services. An empowerment approach to stroke rehabilitation involves collaboration between stroke survivors, caregivers, healthcare providers, health services, and existing community stroke support structures. Framing stroke based care through an empowerment lens may serve to address stroke rehabilitation inadequacies and inequities.
| S-EPMC6805495 | biostudies-literature