What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?

Plain English summary Around 1.3 million adults in Sweden give help, support and care to an ill, aged or disabled family member, neighbour or friend. As informal carers contribute a lot to our societies, it is important to recognise them and, where possible, to involve them in research that affects...

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Autores principales:	Camilla Malm, Stefan Andersson, Maya Kylén, Susanne Iwarsson, Elizabeth Hanson, Steven M. Schmidt
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Informal carers Research involvement Heterogeneity Motivation Obstacles Medicine R Medicine (General) R5-920
Acceso en línea:	https://doaj.org/article/16e1653a377a48ca86ed3e7772410ff7
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spelling	oai:doaj.org-article:16e1653a377a48ca86ed3e7772410ff72021-11-14T12:16:33ZWhat motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?10.1186/s40900-021-00321-x2056-7529https://doaj.org/article/16e1653a377a48ca86ed3e7772410ff72021-11-01T00:00:00Zhttps://doi.org/10.1186/s40900-021-00321-xhttps://doaj.org/toc/2056-7529Plain English summary Around 1.3 million adults in Sweden give help, support and care to an ill, aged or disabled family member, neighbour or friend. As informal carers contribute a lot to our societies, it is important to recognise them and, where possible, to involve them in research that affects them, together with patients and professionals. The rationale for our study is the current lack of studies on carers’ views of being involved in research. 147 carers aged 60+, or who were caring for a person 60+ answered a survey that asked about carers’ motivations for and obstacles to being actively involved in research. By actively involved, we mean that participation was more than filling in a questionnaire or one single interview. We found that carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves. Older age was the only characteristic associated with less interest of being actively involved. A statistical test showed two motivational categories; ‘family motivation’ and ‘the greater good motivation’. These almost equally valued categories described the different reasons for carers to become involved in research. The most common obstacle was lack of time and more women than men reported this. This study adds new knowledge about carer involvement in research. The results of our study could help researchers to create a more supportive climate for actively involving carers in research. For example, by finding more flexible and creative ways to recruit carers and carry out research with them.Camilla MalmStefan AnderssonMaya KylénSusanne IwarssonElizabeth HansonSteven M. SchmidtBMCarticleInformal carersResearch involvementHeterogeneityMotivationObstaclesMedicineRMedicine (General)R5-920ENResearch Involvement and Engagement, Vol 7, Iss 1, Pp 1-14 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Informal carers Research involvement Heterogeneity Motivation Obstacles Medicine R Medicine (General) R5-920
spellingShingle	Informal carers Research involvement Heterogeneity Motivation Obstacles Medicine R Medicine (General) R5-920 Camilla Malm Stefan Andersson Maya Kylén Susanne Iwarsson Elizabeth Hanson Steven M. Schmidt What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
description	Plain English summary Around 1.3 million adults in Sweden give help, support and care to an ill, aged or disabled family member, neighbour or friend. As informal carers contribute a lot to our societies, it is important to recognise them and, where possible, to involve them in research that affects them, together with patients and professionals. The rationale for our study is the current lack of studies on carers’ views of being involved in research. 147 carers aged 60+, or who were caring for a person 60+ answered a survey that asked about carers’ motivations for and obstacles to being actively involved in research. By actively involved, we mean that participation was more than filling in a questionnaire or one single interview. We found that carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves. Older age was the only characteristic associated with less interest of being actively involved. A statistical test showed two motivational categories; ‘family motivation’ and ‘the greater good motivation’. These almost equally valued categories described the different reasons for carers to become involved in research. The most common obstacle was lack of time and more women than men reported this. This study adds new knowledge about carer involvement in research. The results of our study could help researchers to create a more supportive climate for actively involving carers in research. For example, by finding more flexible and creative ways to recruit carers and carry out research with them.
format	article
author	Camilla Malm Stefan Andersson Maya Kylén Susanne Iwarsson Elizabeth Hanson Steven M. Schmidt
author_facet	Camilla Malm Stefan Andersson Maya Kylén Susanne Iwarsson Elizabeth Hanson Steven M. Schmidt
author_sort	Camilla Malm
title	What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
title_short	What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
title_full	What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
title_fullStr	What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
title_full_unstemmed	What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
title_sort	what motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
publisher	BMC
publishDate	2021
url	https://doaj.org/article/16e1653a377a48ca86ed3e7772410ff7
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What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?

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