Dataset Information

Living With Dementia: A Meta-synthesis of Qualitative Research on the Lived Experience.

ABSTRACT: To identify and examine the published qualitative research evidence relative to the experience of living with dementia.Metasynthesis was used as the methodological framework to guide data collection and analysis.Three themes were identified. The first theme considered the main condition-related changes experienced by people with dementia (PWD) and showed how these are interlinked and impact upon various areas of people's lives. The second theme indicated that amidst these changes, PWD strive to maintain continuity in their lives by employing various resources and coping strategies. The third theme underlined the role of contextual factors. The reviewed evidence indicates that, the emerging experience of PWD and their potential to adjust to the continuous changes is influenced by access to and quality of both personal and contextual resources which remain in a constant, transactional relationship to each other.The findings were interpreted and discussed in the context of relevant theoretical frameworks and research evidence. It was considered that current evidence and findings presented in this review can be further explored and expanded upon in a more systematic way through research conducted within the theoretical framework of dynamic systems theory. Further research would be also beneficial to explore the subjective experience of dementia from a participatory perspective. Exploring the application of these theoretical standpoints would contribute to the current state of knowledge and offer both PWD and carers fresh perspective on the nature of change and potential for adaptability in dementia.

SUBMITTER: Gorska S

PROVIDER: S-EPMC5946830 | biostudies-other | 2018 May

REPOSITORIES: biostudies-other

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Living With Dementia: A Meta-synthesis of Qualitative Research on the Lived Experience.

Górska Sylwia S Forsyth Kirsty K Maciver Donald D

The Gerontologist 20180501 3

<h4>Purpose of the study</h4>To identify and examine the published qualitative research evidence relative to the experience of living with dementia.<h4>Design and methods</h4>Metasynthesis was used as the methodological framework to guide data collection and analysis.<h4>Results</h4>Three themes were identified. The first theme considered the main condition-related changes experienced by people with dementia (PWD) and showed how these are interlinked and impact upon various areas of people's liv ...[more]

PMID: 28069886

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Project description:Although multiple measures of the causes and consequences of chronic non-cancer pain (CNCP) are available and can inform pain management, no quantitative summary of these measures can describe the meaning of pain for a patient. The lived experience of pain tends to be a blind spot in pain management. This study aimed to: (1) integrate qualitative research investigating the lived experience of a range of CNCP conditions; (2) establish common qualitative themes in CNCP experience; and (3) evaluate the relevance of our results through a survey questionnaire based on these themes, administered across the United Kingdom. Four bibliographic databases were searched from inception to February 2021 to identify Qualitative Evidence Syntheses (QES) that investigated the lived experience of CNCP and its impact on everyday life and activities. Themes and trends were derived by thematic qualitative analysis in collaboration with two patient and public involvement representatives who co-created twenty survey statements. The survey was developed for testing the QES themes for validity in people living with pain. The research team identified and screened 1323 titles, and considered 86 abstracts, including 20 in the final review. Eight themes were developed from the study findings: (1) my pain gives rise to negative emotions; (2) changes to my life and to myself; (3) adapting to my new normal; (4) effects of my pain management strategies; (5) hiding and showing my pain; (6) medically explaining my pain; (7) relationships to those around me; and (8) working while in pain. Each theme gave rise to one or two survey questions. The survey was shared with members of the UK pain community over a 2-week period in November 2021, and was completed by 1219 people, largely confirming the above themes. This study provides a validated summary of the lived experience of CNCP. It highlights the adverse nature, complications, and consequences of living with CNCP in the UK and the multiple shortcomings in the ways in which pain is addressed by others in the UK. Our findings are consistent with published meta-ethnographies on chronic non-malignant musculoskeletal pain and chronic low-back pain. Despite the underrepresentation of qualitative research in the pain literature compared to quantitative approaches, for understanding the complexity of the lived experience of pain, qualitative research is an essential tool.

Dataset Information

Living With Dementia: A Meta-synthesis of Qualitative Research on the Lived Experience.

Publications

Living With Dementia: A Meta-synthesis of Qualitative Research on the Lived Experience.

Similar Datasets

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