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: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.

Project description:AimsTo explore the experiences of informal caregivers of people with dementia with the hospitalization of their relative concerning patient care, interactions with nurses, caregivers' situation and the acute hospital environment.DesignMixed-methods design.MethodsThe data were collected using an online questionnaire among a panel of caregivers (n = 129), together with a focus group and individual interviews from February to November 2019. The data were triangulated and analysed using a conceptual framework.ResultsAlmost half of the respondents were satisfied with the extent to which nurses considered the patient's dementia. Activities to prevent challenging behaviours and provide person-centred care were rarely seen by the caregivers. Caregivers experienced strain, intensified by a perceived lack of adequate communication and did not feel like partners in care; they also expressed concern about environmental safety. A key suggestion of caregivers was to create a special department for people with dementia, with specialized nurses.ConclusionPositive experiences of caregivers are reported in relation to how nurses take dementia into account, involvement in care and shared decision making. Adverse experiences are described in relation to disease-oriented care, ineffective communication and an unfamiliar environment. Caregivers expressed increased involvement when included in decisions and care when care was performed as described by the triangle of care model. Caregivers reported better care when a person-centred approach was observed. Outcomes can be used in training to help nurses reflect and look for improvements.ImpactThis study confirms that caregivers perceive that when they are more involved in care, this can contribute to improving the care of patients with dementia. The study is relevant for nurses to reflect on their own experiences and become aware of patients' caregivers' perspectives. It also provides insights to improve nurses' training and for organizations to make the care and environment more dementia-friendly.

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.

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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