Using meta-ethnography to understand the care transition experience of people with dementia and their caregivers.
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ABSTRACT:
SUBMITTER: Saragosa M
PROVIDER: S-EPMC8721620 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectiveTo characterize the decision-making process and illness experience of women with pelvic organ prolapse (POP) using large-scale social media analysis.MethodsDigital ethnographic analysis of online posts identified through data mining was performed. Grounded theory methodology was applied to 200 posts via traditional hand coding. To supplement our qualitative approach, we applied a Latent Dirichlet Allocation probabilistic topic modeling process to review the entire data set of identified posts to ensure thematic saturation.ResultsThere were 3451 posts by 2088 unique users from 117 websites worldwide that were identified via social media data mining. We found that the anonymity of online forums allowed for information and support exchange among women with POP. Our analysis revealed that the exchange of online information aids in the decision-making process and, in some instances, appears to be the primary source of information. There was confusion about the anatomical and surgical complexities of prolapse. Our study also identified misconceptions, perceived risk factors, prevention methods, and management recommendations that were discussed online.ConclusionsThis large-scale online community-based analysis demonstrated the utility of social media to better understand women's experiences with POP. Thematic findings highlighted essential concerns and challenges involved in the surgical decision-making process and the understating of the anatomical complexity of sector defects, specifically to cystocele, rectocele, State specific defects.
| S-EPMC9354566 | biostudies-literature
Project description:ObjectivesWe aimed to explore healthcare professionals' experience of treating chronic non-malignant pain by conducting a qualitative evidence synthesis. Understanding this experience from the perspective of healthcare professionals will contribute to improvements in the provision of care.DesignQualitative evidence synthesis using meta-ethnography. We searched five electronic bibliographic databases from inception to November 2016. We included studies that explore healthcare professionals' experience of treating adults with chronic non-malignant pain. We used the GRADE-CERQual framework to rate confidence in review findings.ResultsWe screened the 954 abstracts and 184 full texts and included 77 published studies reporting the experiences of over 1551 international healthcare professionals including doctors, nurses and other health professionals. We abstracted six themes: (1) a sceptical cultural lens, (2) navigating juxtaposed models of medicine, (3) navigating the geography between patient and clinician, (4) challenge of dual advocacy, (5) personal costs and (6) the craft of pain management. We rated confidence in review findings as moderate to high.ConclusionsThis is the first qualitative evidence synthesis of healthcare professionals' experiences of treating people with chronic non-malignant pain. We have presented a model that we developed to help healthcare professionals to understand, think about and modify their experiences of treating patients with chronic pain. Our findings highlight scepticism about chronic pain that might explain why patients feel they are not believed. Findings also indicate a dualism in the biopsychosocial model and the complexity of navigating therapeutic relationships. Our model may be transferable to other patient groups or situations.
| S-EPMC5778293 | biostudies-literature
Project description:BackgroundUnderstanding the health care experience of people with dementia and their caregivers is becoming increasingly important given the growing number of affected individuals. We conducted a systematic review of qualitative studies that examined aspects of the health care experience of people with dementia and their caregivers to better understand ways to improve care for this population.MethodsWe searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and methods from the included studies. We also extracted direct quotes from the primary studies, along with the interpretations provided by authors of the studies. We used meta-ethnography to synthesize the extracted information into an overall framework. We evaluated the quality of the primary studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.ResultsIn total, 46 studies met our inclusion criteria; these involved 1866 people with dementia and their caregivers. We identified 5 major themes: seeking a diagnosis; accessing supports and services; addressing information needs; disease management; and communication and attitudes of health care providers. We conceptualized the health care experience as progressing through phases of seeking understanding and information, identifying the problem, role transitions following diagnosis and living with change.InterpretationThe health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people. Understanding these experiences provides insight into potential gaps in existing health services. Modifying existing services or implementing new models of care to address these gaps may lead to improved outcomes for people with dementia and their caregivers.
| S-EPMC3787191 | biostudies-literature
Project description:BackgroundPeople with chronic pain often seek support from friends and family for everyday tasks. These individuals are termed informal caregivers. There remains uncertainty regarding the lived experiences of these people who care for individuals with chronic musculoskeletal pain. The aim of this article is to synthase the evidence on the lived experiences of informal caregivers providing care to people with chronic musculoskeletal pain.MethodsA systematic literature review was undertaken of published and unpublished literature databases including EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials.gov registry (to September 2019). Qualitative studies exploring the lived experiences of informal caregivers of people with chronic musculoskeletal pain were included. Data were synthesised using a meta-ethnography approach. Evidence was evaluated using the Critical Appraisal Skills Programme qualitative appraisal tool.ResultsFrom 534 citations, 10 studies were eligible (360 participants: 171 informal caregivers of 189 care recipients). The evidence was moderate quality. Seven themes arose: the relationship of caregivers to healthcare professionals; role reversal with care recipients; acting the confidant to the care recipient; a constant burden in caregiving; legitimising care recipient's condition; knowledge and skills to provide caregiving; and the perception of other family members and wider society to the caregiver/care recipient dyad.ConclusionThe lived experiences of caregivers of people with chronic musculoskeletal pain is complex and dynamic. There is an inter-connected relationship between caregivers, care recipients and healthcare professionals. Exploring how these experiences can be modified to improve a caregiving dyad's lived experience is now warranted.
| S-EPMC8138612 | biostudies-literature
Project description:BACKGROUND:Urinary incontinence (UI) is highly prevalent and affects the lives of many men and women. We aimed to conduct a qualitative evidence synthesis (QES) to explore the experience of living with UI and to develop a conceptual model that can help us to understand this experience, and the potential barriers to appropriate healthcare. METHODS:We used the methods of meta-ethnography developed by Noblit and Hare and recently refined for larger studies. Meta-ethnography involves identifying concepts from the studies and abstracting these concepts into a line of argument. We searched for studies that explored the experience of adults with UI. We used the GRADE-CERQual framework to assess confidence in review findings. RESULTS:We screened 2307 titles, 429 abstracts, 107 full texts and included 41 studies (36 unique samples) in the synthesis. We organised the concepts into 26 conceptual categories, which we further abstracted into 6 themes: (1) Am I ill or is this normal? (2) It effects who I am and how I feel; (3) I feel stigmatised, ashamed and guilty; (4) talking can be difficult but it can help; (5) keeping incontinence under control; (6) have I got to the point that I need help? Our model conceptualises living with UI as navigating antagonists: Is UI normal or am I ill? Do I need help or am I managing? Do I keep UI to myself (and manage alone) or do I tell other people (and get the support that I need)? Do I use control strategies that focus on concealing (avoid risky situations, wear pads) versus, I use strategies that focus on improving the bodily function to improve continence. Our model highlights the experience of stigma, shame and guilt which exert a pull towards concealment. CONCLUSIONS:The culture of secrecy and profound sense of shame is barrier to seeking help. An environment which reduces the shame and stigma of UI may help people to switch the focus to strategies that will improve continence, rather than conceal incontinence.
| S-EPMC6964106 | biostudies-literature
Project description:People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.Qualitative study using in-depth interviews and analysed using thematic analysis.Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.
| S-EPMC5625846 | biostudies-other
Project description:BackgroundInterest in physical and mental health outcomes in caregivers of patients with dementia is increasing. However, there is limited data available on the prevalence of suicidal ideation, suicidal attempts, and suicide rates among caregivers of those with dementia. Therefore, we aimed to systematically review these outcomes to address this gap in the literature and thus provide information to inform future policy and intervention for the benefit of caregivers of dementia patients.MethodsWe searched several databases from inception to the 10th November 2021, for studies investigating suicidal ideation, suicidal attempts, and suicide rates of caregivers of patients with dementia. We report data regarding suicidal ideation as prevalence, with the 95% confidence intervals (CIs), applying a random-effect model; since less than three studies were available for suicide attempt and suicide, these data are reported descriptively.ResultsAmong 194 articles, eight comprising 1,209 informal caregivers of people with dementia (mean age: 63.9 years, 74% females) were included. The prevalence of suicide ideation was 32.32% (95% CI: 16.01-48.64%; I2 = 98.5%, p < 0.0001). The prevalence of suicide ideation varied between studies from 4.69% to 77.78%. Two studies reported the rate of suicidal attempt in caregivers of patients with dementia, with the prevalence ranging from 5.9% to 16.1%. One study reported one in 17 caregivers of patients with dementia died by suicide.ConclusionsThe prevalence of suicide ideation is high, affecting several caregivers of patients with dementia. These findings suggest intervention and/or policy are urgently needed to address suicidal behavior in this at-risk population.
| S-EPMC9637612 | biostudies-literature
Project description:BackgroundAdolescent idiopathic scoliosis (AIS) is a common spinal deformity with physical and psychosocial implications for adolescents. The aim of this qualitative evidence synthesis (QES) was to systematically search for, identify, and synthesise qualitative research in order to improve our understanding of what it is like to live with AIS and to facilitate empathetic and effective healthcare.MethodsWe systematically searched 4 databases (Medline, EMBASE, PsycINFO and CINAHL) and used the 7 phases of meta-ethnography to synthesise qualitative evidence including studies with children and adolescents, and additional viewpoints from parents about the experience of AIS.ResultsWe distilled 7 themes. (1) Diagnosis turned time on its head revolves around the AIS diagnosis and the uncertainty of the future that accompanied it. (2) Usual activities no longer the same explores how activities and participation in everyday life are impacted by AIS. (3) Hiding my body describes the pervasive struggle with self-image and appearance. (4) I want to feel normal again explores adolescents' desire to return to 'normality' and challenges of feeling different. (5) Balancing isolation and support considers the relationships in the adolescents' lives alongside their feelings of isolation. (6) Trying to keep control of treatment decisions explores how adolescents and their parents strive to feel in control. (7) Fearing surgery yet feeling hopeful focused on the apprehension and fear around spinal surgery and the beacon of hope it represented.ConclusionsOur QES contributes to the understanding of the adolescent experience of living with AIS. From our findings, clinicians can better understand the physical and psychosocial obstacles and the challenges faced throughout the journey of AIS to inform their clinical interactions with these patients.
| S-EPMC10362777 | biostudies-literature
Project description:BackgroundThere is a pressing need to increase enrollment and representation in Alzheimer's disease and related dementia (ADRD) research. Current recruitment approaches focus largely on clinic and community settings, with minimal engagement of acute care environments despite their broad use across diverse populations. The objectives of this study were to examine views, preferences, and recommendations regarding acute care-based ADRD research recruitment among persons with dementia and their caregivers.MethodsThe authors conducted semistructured interviews with recently hospitalized persons with dementia (N=3) and family caregivers (N=28). Interviews were analyzed using thematic analysis.FindingsAll participants endorsed acute care as an appropriate time for recruitment into ADRD research studies and identified important elements of an appropriately tailored recruitment approach and an interpersonally effective research staff. Participants emphasized that this approach should consider the acute care context with respect to participant situation, uncertainty, and timing. Participant suggestions informed the design of a 5-step process to guide ADRD research recruitment in the context of acute care.DiscussionFindings provide valuable insights from people with dementia and their caregivers regarding opportunities for research engagement surrounding acute care and can inform expanded recruitment in these settings.
| S-EPMC8032819 | biostudies-literature
Project description:BackgroundDementia is a major cause of disability and dependency in older adults worldwide. It is often accompanied by general psychological distress, such as depression and anxiety symptoms, among caregivers of people with dementia (PwD). The physical and mental health of the caregiver is a prerequisite and a promise to help PwD continue to live as long and as well as possible. Web-based interventions can provide convenient and efficient support and an education tool to potentially reduce the negative outcomes associated with providing care.ObjectiveThe aim of this study was to examine the effect of internet-based interventions on the mental health outcomes of family caregivers of PwD and to explore which components of the Web-based interventions play an important role.MethodsA comprehensive literature search was conducted in PubMed, Excerpta Medica dataBASE, PsycINFO, Cochrane Database, and the Cumulative Index to Nursing and Allied Health Literature using relevant terms such as Web-based and caregiver as keywords, covering all studies published before June 2018. A total of 2 reviewers independently reviewed all published abstracts, according to established inclusion and exclusion criteria. We extracted information about the participants, interventions, and results and reviewed article quality in terms of the randomized trial methods, using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions.ResultsA total of 815 caregivers participated in 6 studies, with 4 of the studies using depression as an outcome. The analysis found that depression scores dropped an average of 0.23 (95% CI -0.38 to -0.07; P<.01) after Web-based interventions. In 2 studies of caregivers who were experiencing anxiety symptoms, the average score for anxiety dropped by 0.32 points (95% CI -0.50 to -0.14; P<.01). However, in terms of coping, pain, and stress, the Web-based interventions showed a poor effect. On the whole, the addition of professional psychological support on the basis of education can improve caregivers' mental health.ConclusionsInternet-based interventions were generally effective at reducing anxiety and depression in dementia caregivers, although negative results were found in some studies. As for burden and stress, further research is required.
| S-EPMC6526687 | biostudies-literature