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A Thematic Synthesis of the Experiences of Adults Living with Hemodialysis.

ABSTRACT: Patients on in-center dialysis spend significant amounts of time in the dialysis unit; additionally, managing ESRD affects many aspects of life outside the dialysis unit. To improve the care provided to patients requiring hemodialysis, their experiences and beliefs regarding treatment must be understood. This systematic review aimed to synthesize the experiences of patients receiving in-center hemodialysis.We searched Embase, MEDLINE, CINAHL, PsychINFO, Google Scholar, and reference lists for primary qualitative studies published from 1995 to 2015 that explored the experiences of adult patients receiving treatment with in-center hemodialysis. A thematic synthesis was conducted.Seventeen studies involving 576 patients were included in the synthesis. Four analytic themes were developed. The first theme (a new dialysis-dependent self) describes the changes in identity and perceptions of self that could result from dialysis dependence. The second theme (a restricted life) describes the physical and emotional constraints that patients described as a consequence of their dependence. Some patients reported strategies that allowed them to regain a sense of optimism and influence over the future, and these contributed to the third theme (regaining control). The first three themes describe a potential for change through acceptance, adaption, and regaining a sense of control. The final theme (relationships with health professionals) describes the importance of these relationships for in-center patients and their influence on perceptions of power and support. These relationships are seen to influence the other three themes through information sharing, continuity, and personalized support.Our synthesis has resulted in a framework that can be used to consider interventions to improve patients' experiences of in-center hemodialysis care. Focusing on interventions that are incorporated into the established relationships that patients have with their health care professionals may enable patients to progress toward a sense of control and improve satisfaction with care.

SUBMITTER: Reid C

PROVIDER: S-EPMC4934845 | biostudies-other | 2016 Jul

REPOSITORIES: biostudies-other

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A Thematic Synthesis of the Experiences of Adults Living with Hemodialysis.

Reid Claire C Seymour Julie J Jones Colin C

Clinical journal of the American Society of Nephrology : CJASN 20160531 7

<h4>Background and objectives</h4>Patients on in-center dialysis spend significant amounts of time in the dialysis unit; additionally, managing ESRD affects many aspects of life outside the dialysis unit. To improve the care provided to patients requiring hemodialysis, their experiences and beliefs regarding treatment must be understood. This systematic review aimed to synthesize the experiences of patients receiving in-center hemodialysis.<h4>Design, setting, participants, & measurements</h4>We ...[more]

PMID: 27246010

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Project description:ObjectivesPulmonary hypertension is a life-shortening disease that has a considerable impact on quality of life. Improving our understanding of how individuals are affected and cope with the disease will help to improve services and outcomes. This review synthesises the published qualitative research that has listened to adults discuss their experiences of living with the disease.DesignA comprehensive systematic search of four databases was conducted in May 2020: Web of Science, PubMed, PsycINFO and Cochrane Library. Suitable studies were evaluated using the Critical Appraisal Skills programme. Findings from the studies were extracted and subjected to a thematic synthesis.ResultsNineteen articles were identified reflecting the experiences of over 1900 individuals impacted by pulmonary hypertension from Europe, North and South America and Asia. Ten studies did not report participant's WHO functional class of pulmonary hypertension, which resulted in comparing experiences between different severity difficult. All studies met the majority of the quality assessment items. Six descriptive themes emerged discussing participant's experiences of diagnosis, treatment, prognosis, healthcare professionals, impact and coping with pulmonary hypertension. Four higher order analytical themes were developed from the descriptive themes, reflecting: (i) uncertainties and anxiety that participants encountered related to pulmonary hypertension; (ii) lack of recognition of the impact of the condition; (iii) frustration at the paucity of awareness of pulmonary hypertension in society and healthcare settings and (iv) participant's accounts of transitioning through different stages of living with the disease.ConclusionsThese findings form the first synthesis of experiences of life in individuals impacted by pulmonary hypertension and illustrate the multifaceted impact of the condition. The voices of numerous groups are missing from the literature highlighting the need for additional research. The results have implications for clinical practice emphasising the role of educational and psychological therapies to support those with the disease.

Project description:BackgroundTechnology is increasingly being used and evolving in the dementia care landscape. One such technology that has gained traction over the last decade is virtual reality (VR). VR is being applied in many areas of dementia care, including cognitive assessment and training, reminiscence therapy, music therapy, and other recreational VR applications. Despite the plethora of applications, they are often not shaped by the experiences and perceptions of older adults living with dementia. Currently, there is no qualitative evidence synthesis (QES) to explore this area. This review aimed to provide qualitative evidence supporting existing systematic reviews in this area.ObjectiveThe aim of this QES was to explore key stakeholders' experiences and perceptions of VR for older adults living with dementia. It aimed to explore the barriers and facilitators to VR use and provide recommendations for future design and implementation.MethodsQES was used, which involved a systematic search of 6 databases to identify studies that qualitatively explored key stakeholders' experiences and perceptions of VR for older adults living with dementia. Thematic synthesis was used to integrate the findings of 14 studies (from 15 reports). The Critical Appraisal Skills Programme tool was used to assess the methodological quality of the included studies. The confidence placed in the review findings was assessed using the GRADE-CERQUAL (Confidence in the Evidence from Reviews of Qualitative research).ResultsA total of 15 reports from 14 studies were included in the review, consisting of a range of levels of VR immersion, stages of dementia, and care contexts. Three analytical themes were generated: stepping into virtuality, a virtual world, and returning to reality. The results indicate the importance of sensitively designing and introducing VR to this population, as older adults living with dementia often have no prior experience of using this technology. VR can be a positive experience for older adults living with dementia and can provide meaningful interactions, positive expressions, and long-term impacts on everyday functioning. However, it should be acknowledged that some negative associations must be accounted for before, during, and after use.ConclusionsThis review highlights the positive implications as well as negative associations of VR use. It emphasizes the need for VR design and implementation driven by the needs and views of older adults living with dementia as well as with other key stakeholders. Future research needs to explore the vital role that older adults living with dementia can play in the design process and how they can be empowered to meaningfully design and use this technology.

Project description:BackgroundImmersive virtual reality (IVR) can be defined as a fully computer-generated environment shown on a head-mounted display. Existing research suggests that key features of IVR can assist older adults in their everyday lives, providing opportunities for health promotion and tackling social isolation and loneliness. There has been a surge in qualitative studies exploring older adults' experiences and perceptions of IVR. However, there has been no systematic synthesis of these studies to inform the design of new, more accessible IVR technologies.ObjectiveThis study aimed to systematically review and synthesize qualitative studies exploring older adults' experiences and perceptions of IVR.MethodsA systematic review and thematic synthesis were conducted following the ENTREQ (Enhancing Transparency in Reporting the Synthesis of Qualitative Research) guidelines. In total, 2 reviewers completed title and abstract screening, full-text screening, data extraction, and quality appraisal. Thematic synthesis is derived from the qualitative method, thematic analysis. It involves 3 key steps: initial coding and grouping of these codes, the formation of descriptive themes from these codes, and going beyond these data to form analytical themes. Confidence in the evidence was assessed using the Grading of Recommendations Assessment, Development, and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research approach.ResultsOverall, 13 studies were included in the final synthesis, including 224 participants across 9 countries and 5 continents. Confidence in the evidence ranged from high to moderate. Three descriptive themes were generated: practical aspects of IVR use, experiencing unique features of IVR, and perceptions of IVR. The findings from the descriptive themes suggested that there are several improvements that need to be made to existing IVR devices to facilitate older adults' use of this technology. However, older adults' responses to IVR were generally positive. Three analytical themes were generated: tolerating the bad to experience the good, buying in to IVR (don't judge a book by its cover), and "it proves to me I can do it." The analytical themes illustrated that older adults were willing to tolerate discomforts that accompany existing IVR technologies to experience features such as immersive social networking. There was a discrepancy between older adults' perceptions of IVR before use-which were generally negative-and after use-which were generally positive-and IVR provided a platform for older adults to access certain activities and environments more easily than in the real world because of limitations caused by aging.ConclusionsThis review offers insights into older adults' experiences and perceptions of IVR and suggests how a few improvements to its existing hardware and software as well as how it is first presented could offer new opportunities for older adults to take part in meaningful activities tailored to their needs and preferences.Trial registrationPROSPERO CRD42020200774; https://tinyurl.com/8f48w2vt.International registered report identifier (irrid)RR2-10.1177/16094069211009682.

Project description:BackgroundThe increasing demand for childbirth care based on physiological principles has led official bodies to encourage health centers to provide evidence-based care aimed at promoting women's participation in informed decision-making and avoiding excessive medical intervention during childbirth. One of the goals is to reduce pain and find alternative measures to epidural anesthesia to enhance women's autonomy and well-being during childbirth. Currently, water immersion is used as a non-pharmacological method for pain relief. This review aimed to identify and synthesize evidence on women's and midwives' experiences, values, and preferences regarding water immersion during childbirth.MethodsA systematic review and thematic synthesis of qualitative evidence were conducted. Databases were searched and references were checked according to specific criteria. Studies that used qualitative data collection and analysis methods to examine the opinions of women or midwives in the hospital setting were included. Non-qualitative studies, mixed-methods studies that did not separately report qualitative results, and studies in languages other than English or Spanish were excluded. The Critical Appraisal Skills Program Qualitative Research Checklist was used to assess study quality, and results were synthesized using thematic synthesis.ResultsThirteen studies met the inclusion criteria and were included in this review. The qualitative studies yielded three key themes: 1) reasons identified by women and midwives for choosing a water birth, 2) benefits experienced in water births, and 3) barriers and facilitators of water immersion during childbirth.ConclusionsThe evidence from qualitative studies indicates that women report benefits associated with water birth. From the perspective of midwives, ensuring safe water births requires adequate resources, midwives training, and rigorous standardized protocols to ensure that all pregnant women can safely opt for water immersion during childbirth with satisfactory results.

Project description:Young adults fare worse than younger adolescents or older adults on a broad range of health indicators. Those with a chronic illness such as renal failure are a particularly vulnerable group, who experience poor outcomes compared with both children and older adults. Understanding how being in receipt of renal replacement therapy (RRT) affects the lives of young adults might help us to better prepare and support these individuals for and on RRT, and improve outcomes. This study aimed to synthesise research describing young adults' experiences of the psychosocial impact of kidney failure and RRT.A systematic literature review identified qualitative research reporting the perspectives of people aged 16-30?years receiving RRT on the psychosocial impact of renal failure. Electronic databases (including Medline/EMBASE/PsycINFO/ASSIA) were searched to November 2017 for full-text papers. The transparency of reporting of each study was assessed using the Consolidated Criteria for Reporting Qualitative Health Research (COREQ) framework. Quality was assessed using the Critical Appraisal Skills Programme qualitative checklist. An inductive thematic synthesis was undertaken.Seven studies from five different countries were included, comprising 123 young adults receiving RRT.Comprehensiveness of reporting was variable: studies reported 9-22 of the 32 COREQ-checklist items.Three global themes about the impact of kidney failure on young adults were identified: (1) difference desiring normality, (2) thwarted or moderated dreams and ambitions, and (3) uncertainty and liminality. These reflected five organising themes: (1) physical appearance and body image, (2) activity and participation, (3) educational disruption and underachievement, (4) career ambitions and employment difficulties, and (5) social isolation and intimate relationships.Across different countries and different healthcare settings, young adults on RRT experience difference and liminality, even after transplantation. Tailored social and psychological support is required to allow young adults to experience wellness while in receipt of RRT, and not have life on hold.

Project description:BackgroundDigital mindfulness-based interventions (MBIs) are a promising approach to deliver accessible and scalable mindfulness training and have been shown to improve a range of health outcomes. However, the success of digital MBIs is reliant on adequate engagement, which remains a crucial challenge. Understanding people's experiences of using digital MBIs and identifying the core factors that facilitate or act as barriers to engagement is essential to inform intervention development and maximize engagement and outcomes.ObjectiveThis study aims to systematically map the literature on people's experiences of using digital MBIs that target psychosocial variables (eg, anxiety, depression, distress, and well-being) and identify key barriers to and facilitators of engagement.MethodsWe conducted a scoping review to synthesize empirical qualitative research on people's experiences of using digital MBIs. We adopted a streamlined approach to ensure that the evidence could be incorporated into the early stages of intervention development. The search strategy identified articles with at least one keyword related to mindfulness, digital, user experience, and psychosocial variables in their title or abstract. Inclusion criteria specified that articles must have a qualitative component, report on participants' experiences of using a digital MBI designed to improve psychosocial variables, and have a sample age range that at least partially overlapped with 16 to 35 years. Qualitative data on user experience were charted and analyzed using inductive thematic synthesis to generate understandings that go beyond the content of the original studies. We used the Quality of Reporting Tool to critically appraise the included sources of evidence.ResultsThe search identified 510 studies, 22 (4.3%) of which met the inclusion criteria. Overall, the samples were approximately 78% female and 79% White; participants were aged between 16 and 69 years; and the most used measures in intervention studies were mindfulness, psychological flexibility, and variables related to mental health (including depression, anxiety, stress, and well-being). All studies were judged to be adequately reported. We identified 3 themes characterizing barriers to and facilitators of engagement: responses to own practice (ie, negative reactions to one's own practice are common and can deplete motivation), making mindfulness a habit (ie, creating a consistent training routine is essential yet challenging), and leaning on others (ie, those engaging depend on someone else for support).ConclusionsThe themes identified in this review provide crucial insights as to why people frequently stop engaging with digital MBIs. Researchers and developers should consider using person-based coparticipatory methods to improve acceptability of and engagement with digital MBIs, increase their effectiveness, and support their translation to real-world use. Such strategies must be grounded in relevant literature and meet the priorities and needs of the individuals who will use the interventions.

Project description:ContextImplicating patients in research is gaining popularity around the world and is now the reference of many funding agencies. Understanding these partnerships is necessary to grasp this new reality. The experiences of researchers who have involved patient-partners (PPs) in health research are important for a better understanding of these practices.ObjectiveThis study aimed to identify and analyze the existing qualitative scientific literature on the experiences of academic researchers involved in health research with patient engagement (PE).DesignA scoping review of the available literature with an inductive thematic synthesis, guided by the methodological framework of Arksey and O'Malley.Data collectionA search strategy was developed to include keywords relating to researchers, patient-partners, experiences, and the qualitative methodologies of the targeted studies. Five databases were searched using the EBSCO-host engine. The search results were screened by four reviewers to only include articles written in English on the topic of the experience of academic researchers having worked with PPs in health research based on qualitative studies or mixed-methods studies with a distinct qualitative section.AnalysisArticles included were charted for general information. All "results" sections were coded line by line. These codes were organized inductively to form descriptive and analytical themes. This led to the synthesis of the ideas found in the selected articles.ResultsThe search strategy yielded 7616 results, of which 2468 duplicates were removed. The remaining 5148 articles were screened, resulting in the exclusion of 5114 off-topic studies. The remaining 29 full-text articles were evaluated for inclusion from which 5 additional studies were identified. The final selection consisted of 11 articles that met all the criteria. These articles were published between 2009 and 2019. Five general themes inductively emerged from the analysis: the understanding of PE, motivations, contexts, attitudes, and practical aspects of PE that are central to researchers.ConclusionThis scoping review provides a better understanding of the experiences of researchers who have implemented patient partnerships in health research projects. Our findings reveal many positive elements central to health researchers' discourses about PE, but they provide insights into the challenges and postures of resistance. This knowledge can support the development of empirically sound improvements in PE practices.

Project description:BackgroundSedentary behaviour is any waking behaviour characterised by an energy expenditure of ≤1.5 metabolic equivalent of task while in a sitting or reclining posture. Prolonged bouts of sedentary behaviour have been associated with negative health outcomes in all age groups. We examined qualitative research investigating perceptions and experiences of sedentary behaviour and of participation in non-workplace interventions designed to reduce sedentary behaviour in adult populations.MethodA systematic search of seven databases (MEDLINE, AMED, Cochrane, PsychINFO, SPORTDiscus, CINAHL and Web of Science) was conducted in September 2017. Studies were assessed for methodological quality and a thematic synthesis was conducted. Prospero database ID: CRD42017083436.ResultsThirty individual studies capturing the experiences of 918 individuals were included. Eleven studies examined experiences and/or perceptions of sedentary behaviour in older adults (typically ≥60 years); ten studies focused on sedentary behaviour in people experiencing a clinical condition, four explored influences on sedentary behaviour in adults living in socio-economically disadvantaged communities, two examined university students' experiences of sedentary behaviour, two on those of working-age adults, and one focused on cultural influences on sedentary behaviour. Three analytical themes were identified: 1) the impact of different life stages on sedentary behaviour 2) lifestyle factors influencing sedentary behaviour and 3) barriers and facilitators to changing sedentary behaviour.ConclusionsSedentary behaviour is multifaceted and influenced by a complex interaction between individual, environmental and socio-cultural factors. Micro and macro pressures are experienced at different life stages and in the context of illness; these shape individuals' beliefs and behaviour related to sedentariness. Knowledge of sedentary behaviour and the associated health consequences appears limited in adult populations, therefore there is a need for provision of accessible information about ways in which sedentary behaviour reduction can be integrated in people's daily lives. Interventions targeting a reduction in sedentary behaviour need to consider the multiple influences on sedentariness when designing and implementing interventions.

Project description:BackgroundAlthough being bilingual (knowing two or more languages) is becoming a more common experience globally, little is known about the combined experience of bilingualism and autism. Research currently available focuses on quantifying language and cognitive development, and the only two qualitative accounts of first-hand experiences are from either bilingual children or highly multilingual adults (with four languages or more), which may not represent the wider autistic bilingual population. All other accounts focus on parents or practitioners. This qualitative study reports the experiences of autistic bi- and multilingual adults, focusing on barriers and enablers to language learning and the reported benefits of bilingualism.MethodsThirty-nine U.K.-based autistic bilingual adults (41% female, mean age = 33.2 years, range = 16-61) with knowledge of two to seven languages (mean = 3.6, standard deviation = 1.4) completed an online Demographic and Language Questionnaire, including three open-ended questions about the interplay between autism and bilingualism. A thematic analysis was conducted on the responses to these open-ended questions.ResultsParticipants perceived many opportunities and benefits brought by bilingualism, in terms of relationships, hobbies, mobility, employment, education, and cultural insight. Respondents reported social communication as being a major benefit of being bilingual, and discussed how bilingualism had broadened their mindset, while identifying factors that had enabled or challenged their language learning journey.ConclusionsThis study builds upon the few reports available to highlight the experiences that are shared by autistic bilingual people regardless of the number of languages they know. It is the first study to report the perspectives of U.K.-based autistic bilingual adults who, in most cases, grew up in a bilingual environment. Accounts of the factors that can facilitate or hinder language learning will inform the development of strategies to better support autistic people. These findings have implications for bilingual families and practitioners supporting autistic bilingual people.

Dataset Information

A Thematic Synthesis of the Experiences of Adults Living with Hemodialysis.

Publications

A Thematic Synthesis of the Experiences of Adults Living with Hemodialysis.

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