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Experiences of informal caregivers after cardiac surgery: a systematic integrated review of qualitative and quantitative studies.

ABSTRACT: OBJECTIVES:To provide a comprehensive synthesis of informal caregivers' experiences of caring for a significant other following discharge from cardiac surgery. DESIGN:Systematic integrated review without meta-analysis. DATA SOURCES:A bibliographic search for publications indexed in six databases (Cochrane Library, CINAHL, MEDLINE, EMBASE, AMED and PsycINFO), including a scan of grey literature sources (GreyNet International, Google Scholar, Web of Science, WorldCat and the Clinical Trials Registry) was conducted in October 2018. ELIGIBILITY CRITERIA FOR SELECTING STUDIES:Studies were included if they described views and perspectives of informal caregivers of cardiac surgery patients (non-intervention studies (qualitative and quantitative)), and the effectiveness of interventions to evaluate support programme for informal caregivers of cardiac surgery patients (intervention studies). RESULTS:Of the 4912 articles identified in searches, 42 primary research studies were included in a narrative synthesis with 5292 participants, including 3231 (62%) caregivers of whom 2557 (79%) were women. The median sample size across studies was 96 (range 6-734). Three major themes emerged from the qualitative study data: (1) caregiver information needs; (2) caregiver work challenges and (3) caregivers adaption to recovery. Across the observational studies (n=22), similar themes were found. The trend across seven intervention studies focused on caregiver information needs related to patient disease management and symptom monitoring, and support for caregivers to reduce symptoms of emotional distress. CONCLUSION:Informal caregivers want to assist in the care of their significant others after hospital discharge postcardiac surgery. However, caregivers feel insecure and overwhelmed and they lack clear/concise discharge information and follow-up support during the early at-home recovery period. The burden of caregiving has been recognised and reported since the early 1990s, but there remains a limited number of studies that assesses the effectiveness of caregiver interventions. PROSPERO REGISTRATION NUMBER:CRD42018096590.

SUBMITTER: Bjornnes AK

PROVIDER: S-EPMC6858143 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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Experiences of informal caregivers after cardiac surgery: a systematic integrated review of qualitative and quantitative studies.

Bjørnnes Ann Kristin AK Moons Philip P Parry Monica M Halvorsen Sigrun S Tønnessen Theis T Lie Irene I

BMJ open 20191111 11

<h4>Objectives</h4>To provide a comprehensive synthesis of informal caregivers' experiences of caring for a significant other following discharge from cardiac surgery.<h4>Design</h4>Systematic integrated review without meta-analysis.<h4>Data sources</h4>A bibliographic search for publications indexed in six databases (Cochrane Library, CINAHL, MEDLINE, EMBASE, AMED and PsycINFO), including a scan of grey literature sources (GreyNet International, Google Scholar, Web of Science, WorldCat and the ...[more]

PMID: 31719093

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Project description:ObjectivesTo conduct a systematic review of qualitative studies which explore health professionals' experiences of and perspectives on the enhanced recovery after surgery (ERAS) pathway.DesignSystematic review of qualitative literature using a qualitative content analysis. Literature includes the experiences and views of a wide range of multidisciplinary team and allied health professional staff, to incorporate a diverse range of clinical and professional perspectives.Data sourcesPsycINFO, Medline, CINAHL and PubMed were searched in May 2017.Eligibility criteria for selecting studiesThe searches included relevant qualitative studies across a range of healthcare contexts. We included studies published from 2000 to 2017, as an appropriate time frame to capture evidence about ERAS after implementation in the late 1990s. Only studies published in the English language were included, and we included studies that explicitly stated that they used qualitative approaches.Data extraction and synthesisLiterature searches were conducted by the first author and checked by the second author: both contributed to the extraction and analysis of data. Studies identified as relevant were assessed for eligibility using the Critical Appraisal Skills Programme guidance.ResultsEight studies were included in the review, including studies in six countries and in four surgical specialties. Included studies focus on health professionals' experiences of ERAS before, during and after implementation in colorectal surgery, gastrointestinal surgery, abdominal hysterectomy and orthopaedics. Five main themes emerged in the analysis: communication and collaboration, resistance to change, role and significance of protocol-based care, and knowledge and expectations. Professionals described the importance of effective multidisciplinary team collaboration and communication, providing thorough education to staff and patients, and appointing a dedicated champion as means to implement and integrate ERAS pathways successfully. Evidence-based guidelines were thought to be useful for improvements to patient care by standardising practices and reducing treatment variations, but were thought to be too open to interpretation at local levels. Setting and managing 'realistic' expectations of staff was seen as a priority. Staff attitudes towards ERAS tend to become more favourable over time, as practices become successfully 'normalised'. Strengths of the review are that it includes a wide range of different studies, a variety of clinical populations, diversity of methodological approaches and local contexts. Its limitation is the inclusion of a small number of studies, although these represent six countries and four surgical specialties, and so our findings are likely to be transferable.ConclusionsStaff feel positive about the implementation of ERAS, but find the process is complex and challenging. Challenges can be addressed by ensuring that multidisciplinary teams understand ERAS principles and guidelines, and communicate well with one another and with patients. Provision of comprehensive, coherent and locally relevant information to health professionals is helpful. Identifying and recruiting local ERAS champions is likely to improve the implementation and delivery of ERAS pathways.Prospero registration numberCRD42017059952.

Project description:BackgroundUpper gastrointestinal cancers (UGICs) are increasingly prevalent. With a poor prognosis and significant longer-term effects, UGICs present significant adjustment challenges for individuals with cancer and their informal caregivers. However, the supportive care needs of these informal caregivers are largely unknown. This systematic review of qualitative studies synthesises and critically evaluates the current evidence base on the experience of informal caregivers of individuals with UGIC.MethodsA Joanna Briggs Institute systematic review was conducted. Searches were performed in four databases (MEDLINE, PsycINFO, Embase, CINAHL) from database inception to February 2021. Included studies explored experiences of informal caregivers of individuals diagnosed with primary cancer of the oesophagus, stomach, pancreas, bile duct, gallbladder, or liver. Studies were independently screened for eligibility and included studies were appraised for quality by two reviewers. Data were extracted and synthesised using meta-aggregation.Results19 papers were included in this review, and 328 findings were extracted. These were aggregated into 16 categories across three findings: (1) UGIC caregiver burden; UGIC caregivers undertake extensive responsibilities, especially around patient diet as digestion is severely impacted by UGICs. (2) Mediators of caregiver burden; The nature of UGICs, characterised by disruptive life changes for caregivers, was identified as a mediator for caregiver burden. (3) Consequences of caregiver burden: UGIC caregivers' experiences were shaped by unmet needs, a lack of information and a general decline in social interaction.ConclusionsThe findings of this review suggest the need for a cultural shift within health services. Caregiving for UGIC patients is suggested to adversely affect caregivers' quality of life, similarly to other cancer caregiving populations and therefore they should be better incorporated as co-clients in care-planning and execution by including them in discussions about the patient's diagnosis, treatment options, and potential side effects.

Project description:Mothers, caregivers, and healthcare providers in 163 countries have used paper and electronic home-based records (HBRs) to facilitate primary care visit. These standardized records have the potential to empower women, improve the quality of care for mothers and children and reduce health inequities. This review examines experiences of women, caregivers and providers with home-based records for maternal and child health and seeks to explore the feasibility, acceptability, affordability and equity of these interventions. We systematically searched MEDLINE, MEDLINE In-Process, MEDLINE Ahead of Print, Embase, CINAHL, ERIC, and PsycINFO for articles that were published between January 1992 and December 2017. We used the CASP checklist to assess study quality, a framework analysis to support synthesis, and GRADE-CERQual to assess the confidence in the key findings. Of 7,904 citations, 19 studies met our inclusion criteria. In these studies, mothers, caregivers and children shared HBR experiences in relation to maternal and child health which facilitated the monitoring of immunisations and child growth and development. Participants' reports of HBRs acting as a point of commonality between patient and provider offer an explanation for their perceptions of improved communication and patient-centered care, and enhanced engagement and empowerment during pregnancy and childcare. Healthcare providers and nurses reported that the home-based record increased their feeling of connection with their patients. Although there were concerns around electronic records and confidentiality, there were no specific concerns reported for paper records. Mothers and other caregivers see home based records as having a pivotal role in facilitating primary care visits and enhancing healthcare for their families. The records' potential could be limited by users concerns over confidentiality of electronic home-based records, or shortcomings in their design. Health systems should seize the opportunity HBRs provide in empowering women, especially in the contexts of lower literacy levels and weak health care delivery systems.

Project description:Due to improvements in medicine, the figures of patients with disorders of consciousness (DoC) are increasing. Diagnostics of DoC and prognostication of rehabilitation outcome is challenging but necessary to evaluate recovery potential and to decide on treatment options. Such decisions should be made by doctors and patients' surrogates based on medico-ethical principles. Meeting information needs and communicating effectively with caregivers as the patients´ most common surrogate-decision makers is crucial, and challenging when novel tech-nologies are introduced. This qualitative study aims to explore information needs of informal DoC caregivers, how they manage the obtained information and their perceptions and experiences with caregiver-physician communication in facilities that implemented innovative neurodiagnostics studies. In 2021, we conducted semi-structured interviews with nine caregivers of clinically stable DoC patients in two rehabilitation centers in Italy and Germany. Participants were selected based on consecutive purposeful sampling. Caregivers were recruited at the facilities after written informed consent. All interviews were recorded, transcribed verbatim and translated. For analysis, we used reflexive thematic analysis according to Braun & Clarke (2006). Caregivers experienced the conversations emotionally, generally based on the value of the information provided. They reported to seek positive information, comfort and empathy with-in the communication of results of examinations. They needed detailed information to gain a deep understanding and a clear picture of their loved-one's condition. The results suggest a mismatch between the perspectives of caregivers and the perspectives of medical profession-als, and stress the need for more elaborate approaches to the communication of results of neu-rodiagnostics studies.Supplementary informationThe online version contains supplementary material available at 10.1007/s12152-022-09503-0.

Project description:ObjectivesTo identify, critically appraise and synthesise the qualitative literature on the experiences of informal carers of people with long-term conditions during the COVID-19 pandemic.DesignA qualitative systematic literature review.Data sourcesEight electronic databases were systematically searched (Medline, Embase, CINAHL, PubMed, PsychINFO, Web of Science, Nursing and Allied Health and ASSIA) along with Google Scholar and handsearching via secondary sources.Study selectionEligible studies had to include the experiences of informal carers (adults who are 65 or older), use a qualitative methodology and had to be written in English.Data extraction and synthesisRetrieved papers were quality assessed using the Critical Appraisal Skills Programme qualitative checklist and ranked for quality. Thematic analysis was used to synthesise the findings.ResultsFourteen studies were included, all from medical or nursing journals (n = 5 specifically gerontology). Four main themes were identified: (i) fear, (ii) uncertainty, (iii) burden and (iv) staying connected. Caregiving demands have increased for carers during the pandemic, as well as negative emotions such as fear and uncertainty. At the same time, less social support has been available, leading to concerns about carers' wellbeing and ability to cope.ConclusionCarers' needs have been exacerbated by the COVID-19 pandemic. Greater practical and emotional support is needed for carers from both formal services and community sources that considers their changing needs and offers educational and emotional support for long-term wellbeing. Strengths and Limitations: (1) This is the first systematic review to explore in depth the experiences of informal carers caring for people with a range of long-term conditions and from an international context. (2) The review includes an analysis of the quality of the studies, as well as a study of their relative contributions. (3) Further research is needed to explore the physical, emotional and financial impact of the pandemic for bereaved carers which is not captured in this review due to the lack of empirical data available at the time of review.

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Experiences of informal caregivers after cardiac surgery: a systematic integrated review of qualitative and quantitative studies.

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Experiences of informal caregivers after cardiac surgery: a systematic integrated review of qualitative and quantitative studies.

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