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Experiences of stroke survivors and measurement of post stroke participation and activity across seasons—A mixed methods approach

ABSTRACT: Participation and activity post stroke can be limited due to adverse weather conditions. This study aimed to: Quantify and compare summer and winter participation and activity, and explore how community dwelling people with stroke describe their feelings about their level of participation and activity by season. This embedded mixed-methods observational study took place in a city with weather extremes. Community dwelling individuals at least one year post-stroke, able to walk ≥50 metres +/- a walking aide were included. Evaluations and interviews occurred at participants’ homes in two seasons: Reintegration to Normal living Index (RNL), Activities-specific Balance Confidence (ABC) and descriptive outcomes. Participants wore activity monitors for one week each season. Analysis included descriptive statistics, non-parametric tests and an inductive approach to content analysis. Thirteen individuals participated in quantitative evaluation with eight interviewed. Mean age 61.5 years, 62% female and mean 6.2 years post-stroke. No differences between winter-summer values of RNL, ABC, or activity monitor outcomes. However, participants felt they could do more and were more independent in summer. The winter conditions such as ice, snow, cold and wind restricted participation and limited activities. Nonetheless, many participants were active and participated despite the winter challenges by finding other ways to be active, and relying on social supports and personal motivation. The qualitative findings explained unexpected quantitative results. Participants described many challenges with winter weather, but also ways they had discovered to participate and be active despite these challenges. Changes to future studies into seasonal differences are suggested.

SUBMITTER: Barclay R

PROVIDER: S-EPMC8555779 | biostudies-literature |

REPOSITORIES: biostudies-literature

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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.

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.

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.

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.

Project description:BACKGROUND:Early supported discharge (ESD) models of care for stroke survivors coordinate inpatient and community services, with the aim of reducing length of stay. While there is an established evidence base around the clinical outcomes of ESD), less is known about the implementation of this approach into existing stroke care service. The aim of this case study was to describe staff perceptions of the implementation of an ESD model of care for stroke survivors at a large metropolitan public hospital in Australia. METHODS:This case study utilised a mixed methods design, which was designed in explicit alignment with the Consolidated Framework for Implementation Research (CFIR). Participants included staff that referred patients for ESD, and staff involved in the planning, implementation or delivery of ESD. Survey data was collected at three time points (ESD commencement, 3 months and 6 months), and focus groups were undertaken at the conclusion of the study. All quantitative data was analysed descriptive, while qualitative data was evaluated using thematic analysis. RESULTS:Results from both sources of data identified changes in staff perceptions of ESD implementation over time. While very few changes were statistically significant, they were diverse patterns of change across the CFIR constructs over time. The characteristics of individuals and ESD characteristics attracted consistently positive perceptions, while patient needs and resources was the most prevalent theme within the data. While perceptions of factors related to the inner setting were mixed, there was a steady improvement in perceptions about the process across the later stages of implementation. CONCLUSIONS:The sophistication of knowledge translation and implementation in modern complex healthcare environments is highlighted by the multiple interactions between the CFIR domains and constructs. While the implementation process described was generally positive and effective, using the CFIR as a framework confirmed that it also entailed some challenges and unanticipated outcomes.

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Experiences of stroke survivors and measurement of post stroke participation and activity across seasons—A mixed methods approach

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