Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies
TL;DR: The health care experience of people with dementia and their caregivers is a complex and dynamic process, which could be improved for many people, and understanding these experiences provides insight into potential gaps in existing health services.
Abstract: Methods: We searched the electronic data- bases MEDLINE, Embase, PsychINFO and CINAHL to identify relevant articles. We extracted key study characteristics and meth- ods from the included studies. We also extracted direct quotes from the primary stud- ies, 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. Results: In 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 communica- tion 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 diag- nosis and living with change. Interpretation: The 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 poten- tial 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.
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01 Nov 2017
TL;DR: A recent NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers.
Abstract: This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference.
158 citations
TL;DR: Understanding PLEM is an opportunity for practitioners to identify particular MRBs that patients encounter, and provide individualised care through selection of therapeutic care plans that suit a patient's life, as well as helping to achieve patients’ medication-related needs, and improve medication therapy and health outcomes.
Abstract: Objective To explore medication-related burden (MRB) and patients’ lived experience with medicines (PLEM) without regard to particular medication therapies or medical conditions. Design Systematic review and metasynthesis of qualitative studies. Data sources MEDLINE, EMBASE, International Pharmaceutical Abstracts, PsycINFO, Global health, CINAHL and Web of Science were searched from January 2000 to August 2014 using medication burden and patients’ lived experience terms. Synthesis methods Synthesis was undertaken following metaethnography methods and a comparative thematic analysis technique. Results 34 articles from 12 countries with a total of 1144 participants were included. 3 major inter-related themes emerged central to PLEM: MRB, medication related beliefs and medication taking practice. The negative impact of MRB, due to its interference on patients’ daily lives and effects on well-being, its influence on patients’ beliefs and behaviours, and a potential risk for drug-related problems (DRPs) was evident. This resulted in non-adherence and poorer outcomes (unachieved therapeutic goals and damage to patients’ health). Patients who experienced MRB interference in their life over time begin to juggle their medicines. Others continue their medicines despite experiencing MRB resulting in compromised physical, social or psychological well-being. Conclusions There is a shared commonality of PLEM among the studies. MRB plays a central role in influencing patients’ health and well-being, beliefs and behaviour towards medicines. Given the complexity of MRB and its impact evident from this review, there is a need for healthcare practitioners to have insight into PLEM in therapeutic care plans. Understanding PLEM is an opportunity for practitioners to identify particular MRBs that patients encounter, and provide individualised care through selection of therapeutic care plans that suit a patient9s life. This may assist in helping to achieve patients’ medication-related needs, and improve medication therapy and health outcomes.
153 citations
TL;DR: A qualitative systematic review of the enablers and barriers to implementing collaborative care for patients with anxiety and depression in settings outside the USA and the UK and identified several barriers and enabler within the four major analytical dimensions of NPT.
Abstract: Collaborative care is an increasingly popular approach for improving quality of care for people with mental health problems through an intensified and structured collaboration between primary care providers and health professionals with specialized psychiatric expertise. Trials have shown significant positive effects for patients suffering from depression, but since collaborative care is a complex intervention, it is important to understand the factors which affect its implementation. We present a qualitative systematic review of the enablers and barriers to implementing collaborative care for patients with anxiety and depression. We developed a comprehensive search strategy in cooperation with a research librarian and performed a search in five databases (EMBASE, PubMed, PsycINFO, ProQuest, and CINAHL). All authors independently screened titles and abstracts and reviewed full-text articles. Studies were included if they were published in English and based on the original qualitative data on the implementation of a collaborative care intervention targeted at depression or anxiety in an adult patient population in a high-income country. Our subsequent analysis employed the normalization process theory (NPT). We included 17 studies in our review of which 11 were conducted in the USA, five in the UK, and one in Canada. We identified several barriers and enablers within the four major analytical dimensions of NPT. Securing buy-in among primary care providers was found to be critical but sometimes difficult. Enablers included physician champions, reimbursement for extra work, and feedback on the effectiveness of collaborative care. The social and professional skills of the care managers seemed critical for integrating collaborative care in the primary health care clinic. Day-to-day implementation was also found to be facilitated by the care managers being located in the clinic since this supports regular face-to-face interactions between physicians and care managers. The following areas require special attention when planning collaborative care interventions: effective educational programs, especially for care managers; issues of reimbursement in relation to primary care providers; good systems for communication and monitoring; and promoting face-to-face interaction between care managers and physicians, preferably through co-location. There is a need for well-sampled, in-depth qualitative studies on the implementation of collaborative care in settings outside the USA and the UK.
85 citations
TL;DR: The distress related to delirium superimposed on dementia underlines the importance of providing continuous training, support and experience for both the caregivers and health care staff to improve the care of patients with delirial dementia.
69 citations
Cites background from "Health care experiences of people w..."
...Outpatient studies examining the health care experience of the informal caregivers of patients with dementia report on their feelings of confusion, uncertainty, anxiety and tension [31]....
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TL;DR: Moher et al. as mentioned in this paper introduce PRISMA, an update of the QUOROM guidelines for reporting systematic reviews and meta-analyses, which is used in this paper.
Abstract: David Moher and colleagues introduce PRISMA, an update of the QUOROM guidelines for reporting systematic reviews and meta-analyses
62,157 citations
Journal Article•
TL;DR: The QUOROM Statement (QUality Of Reporting Of Meta-analyses) as mentioned in this paper was developed to address the suboptimal reporting of systematic reviews and meta-analysis of randomized controlled trials.
Abstract: Systematic reviews and meta-analyses have become increasingly important in health care. Clinicians read them to keep up to date with their field,1,2 and they are often used as a starting point for developing clinical practice guidelines. Granting agencies may require a systematic review to ensure there is justification for further research,3 and some health care journals are moving in this direction.4 As with all research, the value of a systematic review depends on what was done, what was found, and the clarity of reporting. As with other publications, the reporting quality of systematic reviews varies, limiting readers' ability to assess the strengths and weaknesses of those reviews.
Several early studies evaluated the quality of review reports. In 1987, Mulrow examined 50 review articles published in 4 leading medical journals in 1985 and 1986 and found that none met all 8 explicit scientific criteria, such as a quality assessment of included studies.5 In 1987, Sacks and colleagues6 evaluated the adequacy of reporting of 83 meta-analyses on 23 characteristics in 6 domains. Reporting was generally poor; between 1 and 14 characteristics were adequately reported (mean = 7.7; standard deviation = 2.7). A 1996 update of this study found little improvement.7
In 1996, to address the suboptimal reporting of meta-analyses, an international group developed a guidance called the QUOROM Statement (QUality Of Reporting Of Meta-analyses), which focused on the reporting of meta-analyses of randomized controlled trials.8 In this article, we summarize a revision of these guidelines, renamed PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses), which have been updated to address several conceptual and practical advances in the science of systematic reviews (Box 1).
Box 1
Conceptual issues in the evolution from QUOROM to PRISMA
46,935 citations
TL;DR: The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.
Abstract: Background. Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers. Although partial checklists are available, no consolidated reporting framework exists for any type of qualitative design. Objective. To develop a checklist for explicit and comprehensive reporting of qualitative studies (indepth interviews and focus groups). Methods. We performed a comprehensive search in Cochrane and Campbell Protocols, Medline, CINAHL, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Duplicate items and those that were ambiguous, too broadly defined and impractical to assess were removed. Results. Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Conclusions. The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.
18,169 citations
"Health care experiences of people w..." refers background or methods in this paper
...*Refers to whether the participants provided feedback on the findings.(18)...
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...Quality of studies We assessed the quality of reporting of included studies using the Consolidated Criteria for Reporting Qualitative Research (COREQ).(18) The presence or absence of reporting of each of the 32 items on the COREQ checklist was assessed in duplicate by 2 authors (J....
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TL;DR: This paper introduces focus group methodology, gives advice on group composition, running the groups, and analysing the results, and gives advice to researchers on how to run and manage focus groups.
Abstract: This paper introduces focus group methodology, gives advice on group composition, running the groups, and analysing the results. Focus groups have advantages for researchers in the field of health and medicine: they do not discriminate against people who cannot read or write and they can encourage participation from people reluctant to be interviewed on their own or who feel they have nothing to say.
This is the fifth in a series of seven articles describing non-quantitative techniques and showing their value in health research
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Focus groups are a form of group interview that capitalises on communication between research participants in order to generate data. Although group interviews are often used simply as a quick and convenient way to collect data from several people simultaneously, focus groups explicitly use group interaction as part of the method. This means that instead of the researcher asking each person to respond to a question in turn, people are encouraged to talk to one another: asking questions, exchanging anecdotes and commenting on each other's experiences and points of view.1 The method is particularly useful for exploring people's knowledge and experiences and can be used to examine not only what people think but how they think and why they think that way.
Focus groups were originally used within communication studies to explore the effects of films and television programmes,2 and are a popular method for assessing health education messages and examining public understandings of illness and of health behaviours.3 4 5 6 7 They are widely used to examine people's experiences of disease and of health services.8 9 and are an effective technique for exploring the attitudes and needs of staff.10 11
The idea behind the focus group method is that group processes can help people to explore and …
6,256 citations