Dataset Information

The experiences and perceptions of personhood for people living with dementia: A qualitative evidence synthesis protocol.

ABSTRACT: Background: Personhood in dementia is concerned with treating people living with dementia with dignity and respect, in a manner that supports their sense of self. It focuses on treating the person living with dementia as a person first and foremost. Supporting personhood in dementia is the key goal of person-centred care. Existing qualitative research examines what personhood means to the person living with dementia and explores what is important to their personhood and sense of self. However, to date little work has focused on synthesising these studies. Methods: This is a protocol for a qualitative evidence synthesis of personhood in dementia. The review examines qualitative peer-reviewed research of the perspectives and experiences of personhood for people living with dementia. A systematic search will be carried out on eight electronic databases and supplemented by other purposeful literature search methods. Title and abstract screening, and full text screening will be carried out by two authors independently. Included studies will be critically appraised. Thematic synthesis will be conducted on all of the included studies. Confidence in the review findings will be assessed using GRADE CERQual. Discussion: The findings from this synthesis will be useful to health care providers and policy makers seeking to understand what personhood means for people living with dementia. The findings will also inform optimal service provision, as well as outcome measures in dementia. PROSPERO registration: CRD42017076114 (21/11/2017).

SUBMITTER: Hennelly N

PROVIDER: S-EPMC7219284 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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The experiences and perceptions of personhood for people living with dementia: A qualitative evidence synthesis protocol.

Hennelly Niamh N Cooney Adeline A Houghton Catherine C O'Shea Eamon E

HRB open research 20180605

<b>Background:</b> Personhood in dementia is concerned with treating people living with dementia with dignity and respect, in a manner that supports their sense of self. It focuses on treating the person living with dementia as a person first and foremost. Supporting personhood in dementia is the key goal of person-centred care. Existing qualitative research examines what personhood means to the person living with dementia and explores what is important to their personhood and sense of self. How ...[more]

PMID: 32490349

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Project description:BackgroundIntergenerational programmes are formal activities bringing different generations together and have been identified as a way to help people living with dementia to stay socially connected. While there is some evidence from individual studies as to their benefits, there is no overall coherent account as to the perceptions and experiences of participants who engage in such programmes. This review synthesises qualitative evidence of the experiences and perceptions of young people and older people living with dementia of participating in such programmes.MethodsWe searched EBSCO CINAHL, OVID Medline, Embase, Ovid PsycINFO, the Web of Science, Epistemonikos and grey literature sources. We used thematic synthesis to analyse and synthesise the evidence in to four themes, with 11 key findings. We assessed our confidence in each of these findings using the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach.FindingsOur review highlights the potential enjoyment for young people and older people living with dementia when participating in Intergenerational programmes, despite some initial trepidation. These programmes provide an opportunity to establish and develop relationships and for young people to learn about dementia, ageing and how to interact with older people living with dementia. However, it is important to have staff facilitators present to provide reassurance to both groups. It is also important to take the personal preferences of participants into account and to be considerate of noise levels and other aspects of programme delivery that may inhibit engagement.ConclusionThis is the first qualitative evidence synthesis specifically exploring Intergenerational programmes aimed at older people living with dementia. We provide insights into the perspectives of those who have participated in Intergenerational programmes. It is important to consider these views, together with other evidence of effectiveness, when planning Intergenerational programmes. While our review is limited by a small number of studies from only a few countries, we have moderate to high confidence in our findings. Further research into the development of Intergenerational programmes specifically tailored for people living with dementia is needed. The findings also provide guidance for people planning to deliver or design future Intergenerational programmes.

Project description:BackgroundThe experiences, physical and mental health and needs of women with breast cancer have been studied in some detail, but there is a lack of discussion of the experiences of stakeholder groups such as men with breast cancer, partners and carers and healthcare professionals. The aim of this study was to explore and understand the experiences and perceptions of male breast cancer stakeholders from diagnosis through to survivorship.MethodsWe conducted a thematic review of qualitative studies included in a large published scoping review on male breast cancer (reported under the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews extension). To be included in a qualitative evidence review, studies had to use qualitative methods for data collection and analysis to capture the perspectives of men with breast cancer, partners or caregivers, and healthcare workers. Key characteristics and findings were extracted and a conceptual coding framework was summarized using thematic analysis.ResultsOut of a total of 310 studies in the research literature (published research articles and gray literature), 15 studies met the inclusion criteria. These studies reported on the experiences of men with breast cancer, partners or caregivers, and healthcare workers, with participant numbers ranging from 2 to 31. A total of 17 descriptive themes (study outcomes) were identified. From these, four high-level analytic themes emerged: (1) Predicament; (2) Emotion; (3) Support; (4) Coping.ConclusionsThe gender stigma that exists at the patient, healthcare system, and family-society levels largely influences the experiences of the male breast cancer stakeholder population. To address gender inequalities in breast cancer care, healthcare organizations and society at large should remain equally attentive to the needs of male and female breast cancer patients. These needs include reducing healthcare and social stigma, providing gender-specific information and emotional support, and access to support groups.

Project description:BackgroundReproductive coercion and abuse is a major public health issue, with significant effects on the health and well-being of women. Reproductive coercion and abuse includes any form of behaviour that intentionally controls another person's reproductive choices. The aim of this qualitative evidence synthesis is to explore women's experiences of reproductive coercion and abuse globally, to broaden understanding of the different ways reproductive coercion and abuse is perpetrated, perceived and experienced across settings and socio-cultural contexts.MethodWe searched Medline, CINAHL and Embase for eligible studies from inception to 25th February 2021. Primary studies with a qualitative study design that focused on the experiences and perceptions of women who have encountered reproductive coercion and abuse were eligible for inclusion. Titles and abstracts, and full texts were screened by independent reviewers. We extracted data from included studies using a form designed for this synthesis and assessed methodological limitations using CASP. We used Thomas and Harden's thematic analysis approach to analyse and synthesise the evidence, and the GRADE-CERQual approach to assess confidence in review findings.ResultsWe included 33 studies from twelve countries in South Asia, the Asia Pacific, North America, South America, Africa and Europe. Most studies used in-depth interviews and focus group discussions to discuss women's experiences of reproductive coercion and abuse. Reproductive coercion and abuse manifested in a range of behaviours including control of pregnancy outcome, pregnancy pressure or contraceptive sabotage. There were a range of reasons cited for reproductive coercion and abuse, including control of women, rigid gender roles, social inequalities and family pressure. Women's different responses to reproductive coercion and abuse included using covert contraception and feelings of distress, anger and trauma. Across contexts, perpetration and experiences of reproductive coercion and abuse were influenced by different factors including son preferences and social exclusion.ConclusionsWe reflect on the importance of socio-cultural factors in understanding the phenomenon of reproductive coercion and abuse and how it affects women, as well as how the mechanisms of power and control at both individual and societal levels work to perpetuate the incidence of reproductive coercion and abuse against women.

Project description:Children with developmental coordination disorder (DCD) face significant challenges to deal with everyday activities due to underlying motor proficiency difficulties. These challenges affect children and young people's participation; that is, involvement in daily life situations. In the past, limited consideration was given to personal experience of events, relationships and everyday life in children and young people with DCD; as a result, understanding what it is like to live with DCD is not well conceptualised in the literature. There is a pressing need to synthesise the findings of discrete qualitative studies to advance the conceptual understanding of living with DCD, to inform health service delivery and the development and implementation of complex interventions. This study aims to systematically review and synthesise qualitative literature regarding children and young people's experiences and views of everyday life and living with DCD. The method of qualitative evidence synthesis that will be followed in this review is a meta-ethnography. The eMERGe and PRISMA reporting guidelines will be used in the development, design and reporting of this review. Nine databases will be searched; Academic Search Complete, AMED, CINAHL, MEDLINE, PsychArticles, PsychInfo, EMBASE, SPORTDiscus, and Web of Science. Two independent reviewers will use the Joanna Briggs Institute Checklist to appraise all included papers. The findings of this meta-ethnography will endeavour to inform future research, policy and practice. In particular, the results will help to inform the design of future complex interventions to meet the needs of children and young people with DCD. Dissemination will involve the publication of the results in a peer-reviewed journal. Increasingly researchers and policymakers are calling for services to be informed by the perspective and voice of children with DCD; therefore, a policy brief will be published so that the findings are widely available. Registration: PROSPERO registration number CRD42019129178; registered on 09 July 2019.

Dataset Information

The experiences and perceptions of personhood for people living with dementia: A qualitative evidence synthesis protocol.

Publications

The experiences and perceptions of personhood for people living with dementia: A qualitative evidence synthesis protocol.

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