Dataset Information

Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

ABSTRACT: OBJECTIVES:To assess the acceptability and use of a low-cost patient-held communication tool. DESIGN:Longitudinal qualitative interviews at three time points over 18 months and document content analysis. SETTING:Primary and community services. PARTICIPANTS:Twenty-eight dyads: People living with dementia in Northern Ireland and their informal carers. INTERVENTIONS:A patient-held healthcare 'passport' for people living with dementia. PRIMARY AND SECONDARY OUTCOMES:Acceptability and use of the passport-barriers and facilitators to successful engagement. RESULTS:There was a qualified appreciation of the healthcare passport and a much more nuanced, individualistic or personalised approach to its desirability and use. How people perceive it and what they actually do with it are strongly determined by individual contexts, dementia stage and other health problems, social and family needs and capacities. We noted concerns about privacy and ambivalence about engaging with health professionals. CONCLUSION:Such tools may be of use but there is a need for demanding, thoughtful and nuanced programme delivery for future implementation in dementia care. The incentivisation and commitment of general practitioners is crucial. Altering the asymmetrical relationship between professionals and patients requires more extensive attention.

SUBMITTER: Leavey G

PROVIDER: S-EPMC7223142 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

Leavey Gerard G Corry Dagmar Suzanna DS Waterhouse-Bradley Bethany B Curran Emma E Todd Stephen S McIlfatrick Sonja S Coates Vivien V Watson Max M Abbott Aine A McCrory Bernadine B McCormack Brendan B

BMJ open 20200505 5

<h4>Objectives</h4>To assess the acceptability and use of a low-cost patient-held communication tool.<h4>Design</h4>Longitudinal qualitative interviews at three time points over 18 months and document content analysis.<h4>Setting</h4>Primary and community services.<h4>Participants</h4>Twenty-eight dyads: People living with dementia in Northern Ireland and their informal carers.<h4>Interventions</h4>A patient-held healthcare 'passport' for people living with dementia.<h4>Primary and secondary out ...[more]

PMID: 32376757

Similar Datasets

Project description:BackgroundHealth policy promotes post-diagnostic support for people affected by dementia. Evidence suggests psychosocial interventions can effectively support people living with dementia after diagnosis. Yet, what influences uptake of psychosocial interventions by people with early dementia is poorly understood. This research aimed to identify influences on uptake of psychosocial interventions by people with early dementia.MethodsSixteen face-to-face semi-structured interviews with people with early dementia, either alone or with a family member(s), were completed. Twelve staff participated in semi-structured interviews or a focus group. Thematic analysis and triangulation enabled identification of overall themes across different participant groups and interview types.Main findingsFour overarching themes influencing uptake were identified: (1) adjusting to a diagnosis, (2) appeal of activities and perception of benefit, (3) service and societal context, and (4) relationships and communication. Individual responses to diagnosis, experiences of dementia and dementia services influenced uptake. Group interventions were discussed the most by all participants. Group interventions offering social contact, peer support, information, enjoyable activities and mental stimulation were valued. However, group interventions specifically aimed at people with dementia did not appeal to all. Ability to travel and convenience of locations were important. Continuing with community activities not focused on dementia was valued. Stigma around dementia appeared to discourage uptake. Emotional and practical support from family was key to facilitating uptake as were the relationships between people with dementia and staff.ConclusionA complex interplay of individual, service and societal influences affect uptake of psychosocial interventions by people with early dementia. How interventions and which services can enable people with early dementia remain engaged in their everyday lives needs consideration. Further research examining uptake of specific interventions commonly offered to people living with early dementia is needed. Involving people with early dementia in designing interventions aiming to support them is paramount.

Project description:IntroductionSignificant progress has been made in the HIV response in South Africa; however, gaps remain in ensuring engagement in care to support life-long medication adherence and viral suppression. The National Department of Health (NDoH) has introduced community-based and clinic-based HIV differentiated service delivery (DSD) models to tackle suboptimal adherence and retention in care. Nevertheless, differentiated care models require adaptation to better serve clients who struggle with adherence. There is limited research on the acceptability of fee for home delivery of ART in resource-constrained settings. The current study investigates the acceptability of fee for home delivery of ART among people living with HIV in South Africa.MethodsTwo mixed-gender focus group discussions (FGDs) took place between June and November 2019, consisting of 10 participants in each group. A purposive sampling strategy was employed to identify and select 10 people living with HIV who were ART-eligible but not in care, and 10 people living with HIV who were currently taking ART and in care. Participants were grouped according to their treatment status. A coding framework, informed by a priori categories and derived from topics in the interview guide, was developed and utilized to facilitate analysis.ResultsParticipants expressed enthusiasm for having ART home-delivered, as it would save the time spent waiting in long queues at the clinic. However, some participants raised concerns about potential payment difficulties due to high unemployment rates in the community. Some participants believed this would be acceptable, as patients already incur costs for travel and food when visiting the clinic. Participants in both FGDs expressed strong concerns about home delivery of their ART based on fear of accidental disclosure, especially for those who have not disclosed to their immediate families and partners.ConclusionOur study suggests that charging a fee for home delivery is an acceptable and innovative approach to supporting PLHIV in maintaining adherence to their medication and remaining in care.

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.

Dataset Information

Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

Publications

Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets