Dataset Information

Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies.

ABSTRACT:

Background

Understanding 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.

Methods

We 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.

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 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.

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 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.

SUBMITTER: Prorok JC

PROVIDER: S-EPMC3787191 | biostudies-literature | 2013 Oct

REPOSITORIES: biostudies-literature

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Publications

Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies.

Prorok Jeanette C JC Horgan Salinda S Seitz Dallas P DP

CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne 20130903 14

<h4>Background</h4>Understanding 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.<h4>Methods</h4>We searched the electronic databases MEDLINE, Embase, PsychINFO and CINAHL to i ...[more]

PMID: 24003093

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Project description:BackgroundPerson-centered care (PCC) is a critical approach to improving the quality of care for community-dwelling older people. Old-age care services could be provided according to older peoples' choices, needs, and preferences. The purpose of this study was to synthesize research evidence on the experiences of older people, healthcare providers, and caregivers with PCC and to identify the enablers and barriers to implementing PCC for community-dwelling older people.MethodsA meta-synthesis of qualitative research design was adopted. Data searches were performed using CINAHL (EBSCOhost), PubMed (OvidSP), Embase (Ovid), Cochrane Database, and PsycINFO (Ovid) in published articles and were reviewed from the earliest date to February 2023. The Qualitative Method Appraisal Tool was used to conduct a quality appraisal on selected articles. Data were extracted based on the capacity, opportunity, and motivation-behavior model (COM-B model), and the findings were synthesized using the meta-aggregative approach.ResultsTwelve included articles were analyzed to identify 122 findings that were organized into 11 categories and combined into three synthesized findings-capacities of older people, healthcare providers, and caregivers; opportunities in the implementation of PCC; motivation in implementing PCC. Capacities consisted of a lack of person-centered knowledge and skills, negative attitudes toward shared decision-making, and a lack of formal training to enhance capabilities among HCPs. Opportunities included a lack of coordination in resource allocation, strengthening multidisciplinary teamwork, establishing a desirable environment, and time constraints. Motivation in implementing PCC included encouraging self-reflection and regulation, respecting the autonomy of older people, lack of clear reward and empowerment mechanisms, and being resilient and optimistic.ConclusionsThe findings of this research provide a reference for implementing successful PCC in the community. The researchers identified barriers and facilitators of implementing PCC, facilitating through stakeholder's person-centered knowledge and skills being valued and respecting the autonomy of older people. Establishing a positive environment and strengthening multidisciplinary team members also promotes the implementation of PCC. However, additional studies are required to explore the influencing factors and address the barriers.

Project description:BackgroundThere are 50 million dementia sufferers worldwide. Decisions about healthcare often need to be made when the person with dementia lacks capacity to do so.Understanding the support needs of carers acting as proxy healthcare decision-makers will be vital in improving the decision-making process for people with dementia and addressing the holistic needs of carers.ObjectiveThe objective of this study was to review the existing literature on the support needs of carers acting as proxy healthcare decision-makers for people with dementia.DesignA qualitative systematic review protocol was published on PROSPERO. The Critical Appraisal Skills Programme checklist was used to appraise study quality. A meta-ethnographic synthesis was performed to develop third-order constructs.Data sourcesA search was conducted using three online databases (MEDLINE, CINAHL and PsycINFO).Eligibility criteriaFifteen studies met the inclusion criteria: primary qualitative research involving carers of people with dementia who had been involved in making proxy healthcare decisions.Data extraction and synthesisTwo independent researchers conducted validity assessments for each paper selected for inclusion, and discrepancies were resolved by discussions with a third reviewer. Nvivo software was used and conceptual findings from study papers lead to interpretations of findings by the team.ResultsFrom the 15 papers included in the study, three main domains arose from the meta-ethnography; informational, practical and emotional. Informational support needs included information about dementia itself and the anticipated disease trajectory. Practical needs included continuity of care, person-centred care and the use of legal frameworks.Emotional support included recognising the guilt that healthcare decisions can provoke and the importance of providing guidance in an empathic manner.ConclusionsThis meta-ethnography highlights opportunities for healthcare professionals and policymakers to improve experiences of carers making proxy healthcare decisions for people with dementia.Prospero registration numberCRD42020124485.

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Dataset Information

Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies.

Background

Methods

Results

Interpretation

Publications

Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies.

Similar Datasets

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