Experiences of Dysphagia after Stroke: An Interview Study of Stroke Survivors and Their Informal Caregivers.
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ABSTRACT:
SUBMITTER: Eltringham SA
PROVIDER: S-EPMC6960615 | biostudies-literature | 2019 Dec
REPOSITORIES: biostudies-literature
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Experiences of Dysphagia after Stroke: An Interview Study of Stroke Survivors and Their Informal Caregivers.
Eltringham Sabrina A SA Pownall Sue S Bray Ben B Smith Craig J CJ Piercy Laura L Sage Karen K
Geriatrics (Basel, Switzerland) 20191207 4
(1) Background: Swallowing difficulties (dysphagia) after stroke are not uncommon and is a consistent risk factor for stroke-associated pneumonia. This interview study explores the perspectives of stroke survivors, who had their swallowing assessed in the first few days of admission to hospital, and their informal caregivers. (2) Methods: A participatory approach was used involving people affected by stroke in the interpretation and analysis of the interview data. Data was thematically analysed ...[more]
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Project description:BackgroundWeb-based interventions have shown promise for chronic disease management but have not been widely applied to populations with stroke. Existing barriers may inhibit the adoption of web-based interventions among stroke survivors and necessitate the involvement of informal caregivers. However, limited information is available on internet accessibility and usability among stroke survivors and their caregivers.ObjectiveThis study aims to investigate internet access and usage in a cohort of stroke survivors and their caregivers.MethodsA cross-sectional survey was conducted with 375 participants (248 stroke survivors and 127 caregivers). Descriptive statistics were generated using cross-tabulation. Comparisons with categorical data were conducted using the chi-square test, whereas the Mann-Whitney U test was used for comparisons involving ordinal variables.ResultsOverall, 86.1% (323/375) of the participants reported having internet access. Caregivers were more likely than stroke survivors to access the internet (N=375, χ21=18.5, P<.001) and used text messaging (n=321, χ21=14.7, P<.001). Stroke survivors and caregivers with internet access were younger than stroke survivors and caregivers without internet access. The highest number of participants who reported internet access were non-Hispanic White. Smartphones were the most common devices used to access the internet. Email was the most common type of internet usage reported. Patients who survived for >12 months after a stroke reported higher internet access than those who survived <3 months (P<.001). The number of hours per week spent using the internet was higher for caregivers than for stroke survivors (P<.001).ConclusionsFuture feasibility and acceptability studies should consider the role of the informal caregiver, participant age, race and ethnicity, the use of smartphone apps, email and text correspondence, and the amount of time elapsed since the stroke event in the design and implementation of web-based interventions for populations with stroke.
| S-EPMC7985796 | biostudies-literature
Project description:To understand the perspectives of stroke survivors, caregivers and general practitioners (GPs) on a polypill approach, consisting of blood pressure and cholesterol-lowering therapies, with or without aspirin, for the secondary prevention of stroke.A qualitative interview study was undertaken in 5 GP surgeries in the East of England. 28 survivors of stroke/transient ischaemic attack (TIA) were interviewed, 14 of them with a caregiver present, along with a convenience sample of 5 GPs, to assess attitudes towards a polypill and future use. Topic guides explored participants attitudes, potential uptake and long-term use, management of polypill medication and factors influencing the decision to prescribe. Data were analysed using a grounded theory approach. Key themes are presented and illustrated with verbatim quotes.The analysis identified 3 key themes: polypill benefits, polypill concerns and polypill lessons for implementation. Stroke/TIA survivors were positive about the polypill concept and considered it acceptable in the secondary prevention of stroke. Perceived benefits of a polypill included convenience resulting in improved adherence and reduced burden of treatment. Caregivers felt that a polypill would improve medication-taking practices, and GPs were open to prescribing it to those at increased cardiovascular risk. However, concerns raised included whether a polypill provided equivalent therapeutic benefit, side effects through combining medications, consequences of non-adherence, lack of flexibility in regulating dosage, disruption to current treatment and suitability to the wider stroke population.Participants acknowledged potential advantages in a polypill approach for secondary prevention of stroke; however, significant concerns remain. Further research on the efficacy of a polypill is needed to reassure practitioners whose concerns around inflexibility and treatment suitability are likely to influence the decision to prescribe a polypill for secondary prevention of stroke. Acceptability among survivors, caregivers and GPs is likely to determine the uptake and subsequent use of a polypill in the future.
| S-EPMC4874103 | biostudies-other
Project description:Little is known about the burden of cross-cultural care for stroke patients. This article compares the perceived burden for caregivers of stroke survivors in Korea and the United States. A brief interview was conducted to determine specific problem areas for caregivers. Caregiver burden (using the Sense of Competence Questionnaire) and social support (using the ENRICHD Social Support Inventory) also were measured. The overall-sense-of-burden-from-caregiving score was significantly higher in the Korean cohort than in the American cohort, as was the scale regarding satisfaction with the relationship with the recipient of care. The primary predictors of overall burden for the combined sample were caregiver and patient depression and insufficient social support. Lower perceived social support among Korean caregivers was strongly related to caregiver depression, while it was more strongly related to increased hours of caregiving in the American sample. These findings can help rehabilitation nurses plan supportive interventions that incorporate cultural values for stroke survivors and their caregivers.
| S-EPMC2821598 | biostudies-literature
Project description:(1) Background: Patients with dysphagia are at increased risk of stroke-associated pneumonia. There is wide variation in the way patients are screened and assessed. The aim of this study is to explore staff opinions about current practice of dysphagia screening, assessment and clinical management in acute phase stroke. (2) Methods: Fifteen interviews were conducted in five English National Health Service hospitals. Hospitals were selected based on size and performance against national targets for dysphagia screening and assessment, and prevalence of stroke-associated pneumonia. Participants were purposefully recruited to reflect a range of healthcare professions. Data were analysed using a six-stage thematic process. (3) Results: Three meta themes were identified: delays in care, lack of standardisation and variability in resources. Patient, staff, and service factors that contribute to delays in dysphagia screening, assessment by a speech and language therapist, and delays in nasogastric tube feeding were identified. These included admission route, perceived lack of ownership for screening patients, prioritisation of assessments and staff resources. There was a lack of standardisation of dysphagia screening protocols and oral care. There was variability in staff competences and resources to assess patients, types of medical interventions, and care processes. (4) Conclusion: There is a lack of standardisation in the way patients are assessed for dysphagia and variation in practice relating to staff competences, resources and care processes between hospitals. A range of patient, staff and service factors have the potential to impact on stroke patients being assessed within the recommended national guidelines.
| S-EPMC6960646 | biostudies-literature
Project description:OBJECTIVES:Forecasting survival in cancer is a particularly challenging facet of oncological work and can involve complex interactions with patients and their families. While there is considerable research on patient experiences of being provided with, or becoming aware of, their prognosis, there has been much less emphasis placed on the experiences of caregivers. The aim of this paper was to examine caregivers' experiences of prognosis. DESIGN:This study used semistructured interviews; transcripts were analysed thematically using the framework approach. These data are part of a larger research project focused on experiences of cancer survivorship. SETTING:Recruitment was from two metropolitan hospitals in Queensland, Australia. PARTICIPANTS:50 caregivers of patients living with cancer and receiving treatment at two metropolitan hospitals (32% male, 68% female) participated in this study. RESULTS:Four main themes were identified: (1) caregivers' uncertainty around the meaning and implications of prognosis, (2) caregivers' sense of exclusion in prognostic conversations, (3) the practice of situating prognosis within a context of hope and (4) the precarious balance between realism, optimism and strategic 'ignorance'. CONCLUSIONS:Caregivers are in many respects the unseen third party of prognostic communication. Developing a better understanding of caregivers' perceptions of prognosis, including how this may be challenged, accepted or otherwise, is important in engaging caregivers in the process of communicating prognostic information. Facilitating greater participation by caregivers in prognostic conversations could potentially address evident complexities and even improve the experiences of all stakeholders in cancer care settings.
| S-EPMC7045218 | biostudies-literature
Project description:BackgroundStroke is a leading cause for long-term disability, requiring both inpatient and outpatient rehabilitation and self-training in the home environment. Technology-based tools are gradually gaining acceptance as additional and suitable options for extending the rehabilitation process. While the experiences of persons living with stroke, therapists, and informal caregivers with respect to technology use have already been investigated in other countries, this topic is underexplored in the Swiss context.ObjectiveWe aimed to explore the experiences and needs of persons living with stroke, informal caregivers, and therapists in using technology-based tools in a home environment for stroke rehabilitation in Switzerland.MethodsThis study followed a qualitative descriptive methodology, including semistructured interviews and focus group discussions. We applied a deductive template analysis alongside the accessibility, adaptability, accountability, and engagement framework to analyze the qualitative data sets for technology-assisted solutions for poststroke rehabilitation.ResultsWe collected the experiences and needs of persons living with stroke (7/23, 30%), informal caregivers (4/23, 17%), and therapists (occupational and physical therapists; 12/23, 52%). The 4 categories we used to organize the analysis and results were accessibility to quality rehabilitation, adaptability to patient differences, accountability or compliance with rehabilitation, and engagement with rehabilitation. Persons living with stroke stated that they use various tools within their rehabilitation process depending on their specific needs. They felt that there is a plethora of tools available but sometimes felt overwhelmed with the selection process. Informal caregivers indicated that they generally felt underserved and insufficiently informed throughout the rehabilitation process. They reported that they use technology-based tools to support their relatives affected by stroke in becoming more independent. Therapists appreciate the numerous possible applications of technology-based tools in rehabilitation. At the same time, however, they express dissatisfaction with the lack of clarity in Switzerland regarding cost coverage, recommendations, and training opportunities.ConclusionsPersons living with stroke, informal caregivers, and therapists in Switzerland reported varied and unique experiences and needs with the use of technology-based tools in outpatient stroke rehabilitation. Written recommendations, the assumption of financial costs, and the provision of information and education could foster increased confidence in the use of technology-based tools for patients and therapists.
| S-EPMC11294768 | biostudies-literature
Project description:BackgroundCritical illness and the problems faced after ICU discharge do not only affect the patient, it also negatively impacts patients' informal caregivers. There is no review which summarizes all types of burden reported in informal caregivers of ICU survivors. It is important that the burdens these informal caregivers suffer are systematically assessed so the caregivers can receive the professional care they need. We aimed to provide a complete overview of the types of burdens reported in informal caregivers of adult ICU survivors, to make recommendations on which burdens should be assessed in this population, and which tools should be used to assess them.MethodWe performed a systematic search in PubMed and CINAHL from database inception until June 2014. All articles reporting on burdens in informal caregivers of adult ICU survivors were included. Two independent reviewers used a standardized form to extract characteristics of informal caregivers, types of burdens and instruments used to assess these burdens. The quality of the included studies was assessed using the Newcastle-Ottawa and the PEDro scales.ResultsThe search yielded 2704 articles, of which we included 28 in our review. The most commonly reported outcomes were psychosocial burden. Six months after ICU discharge, the prevalence of anxiety was between 15% and 24%, depression between 4.7% and 36.4% and post-traumatic stress disorder (PTSD) between 35% and 57.1%. Loss of employment, financial burden, lifestyle interference and low health-related quality of life (HRQoL) were also frequently reported. The most commonly used tools were the Hospital Anxiety and Depression Scale (HADS), Centre for Epidemiological Studies-Depression questionnaire, and Impact of Event Scale (IES). The quality of observational studies was low and of randomized studies moderate to fair.ConclusionsInformal caregivers of ICU survivors suffer a substantial variety of burdens. Although the quality of the included studies was poor, there is evidence that burden in the psychosocial field is most prevalent. We suggest screening informal caregivers of ICU survivors for anxiety, depression, PTSD, and HRQoL using respectively the HADS, IES and Short Form 36 and recommend a follow-up period of at least 6 months.
| S-EPMC4721206 | biostudies-literature
Project description:IntroductionBesides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. The identification of OD-related needs is crucial for designing appropriate person-centered interventions.AimsTo explore and map the literature investigating the care needs related to OD management of adult persons with OD and their informal caregivers during the last 20 years.MethodsA scoping review was conducted and reported following PRISMA guidelines. Five electronic databases and reference lists of eligible publications were searched for original works in English or Italian, published between January 2000 and February 2021. Two independent raters assessed studies' eligibility and extracted data; a third rater resolved disagreements. Extracted care needs were analyzed using a Best fit framework synthesis approach.ResultsOut of 2,534 records preliminarily identified, 15 studies were included in the review and 266 care needs were extracted. All studies were conducted in Western countries. Research methods primarily consisted of qualitative interviews and focus groups (14 studies, 93.3%); head and neck cancer was the most frequent cause of patients' dysphagia (8 studies, 53.3%); caregivers' perspective was seldom investigated (5 studies, 33.3%). Both patients and caregivers primarily reported social (N = 77; 28.9%) and practical (N = 67; 25.2%) needs, followed by informational (N = 55; 20.7%) and psychological (N = 54; 20.3%) ones. Only patients reported physical needs (N = 13; 4.9%), while spiritual needs were not cited.ConclusionsThe recurrence of personal and social needs besides physical ones highlighted the manifold impact of OD on patients' and caregivers' lives. Larger and more focused studies are required in order to design tools and interventions tailored to patients' and caregivers' needs.
| S-EPMC8460009 | biostudies-literature
Project description:BackgroundWeb-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions.ObjectiveIn this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans.MethodsThis was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention.ResultsSurvey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network's resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers.ConclusionsThese findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers' needs for emotional support.
| S-EPMC6134228 | biostudies-literature
Project description:PURPOSE:To describe the health-related quality of life (HRQoL) of caregivers and survivors of transient ischaemic attack (TIA) and stroke during one year post discharge in comparison to age- and sex-matched population norms; and to analyse the association of initial stroke severity, measured by a routinely used stroke-specific scale, on subsequent HRQoL of caregivers and survivors. METHODS:Cohort of hospitalized patients with TIA and stroke discharged alive from a large university hospital in Norway, and their informal caregivers. Questionnaires at 3 and 12 months post discharge were filled out by caregivers (n = 320 and n = 326, respectively) and survivors (n = 368 and n = 383, respectively). Multivariable linear regression analyses tested associations between initial stroke severity (National Institutes of Health Stroke Scale, NIHSS) and HRQoL (EQ-5D-3L) in caregivers and survivors. RESULTS:Caregivers of survivors with TIA or stroke did not report lower HRQoL than matched norms. There was some evidence of an association of the NIHSS with caregiver HRQoL at 3 months only (age-sex-adjusted coefficient - 0.01, p = 0.008), however, this was attenuated after additional adjustments. Survivors with stroke, but not TIA, reported lower HRQoL than population norms at both time points. There was a negative association between higher NIHSS scores and survivors' HRQoL; fully adjusted coefficient - 0.01 at both time points (p = 0.001). CONCLUSION:The informal caregivers and survivors with TIA did not report lower than expected HRQoL. Increasing stroke severity was associated with decreasing HRQoL among survivors, but had limited predictive value among caregivers. Other factors may therefore be better indicators of 'at risk' caregivers.
| S-EPMC7561590 | biostudies-literature