Awareness of and Attitudes Toward User Involvement in Research on Aging and Health: Protocol for a Quantitative Large-Scale Panel Study

Kylén, Maya; Schmidt, Steven M.; Jönsson, Oskar; Slaug, Björn; Iwarsson, Susanne

doi:10.2196/17759

Cited by 4 publications

(14 citation statements)

References 28 publications

(31 reference statements)

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“…Additional methodological issues should also be noted. Although the survey was developed in collaboration with users (senior citizens, informal carers, professionals) and researchers [ 34 ], due to the length and phrasing of the questions, there is a risk that the survey was perceived as intimidating, causing potential respondents to choose not to respond at all, or to ‘break off’, i.e. stop completing the survey after having completed just part of it [ 60 ].…”

Section: Discussionmentioning

confidence: 99%

“…Nevertheless, as research conducted within the field of user involvement thus far has been dominated by small-scale, often retrospective, qualitative designs [ 5 ], designs of the type represented by the present study can be argued to comprise a valuable contribution [ 3 , 5 , 11 , 34 ], despite their limitations. To the best of our knowledge, there have been no previous quantitative studies regarding active informal carer involvement in research.…”

Section: Discussionmentioning

confidence: 99%

“…The purpose of the panel study is to investigate the awareness and understanding of and attitudes towards user involvement in ageing and health research among different categories of users (senior citizens, informal carers, professionals) and researchers. More detailed information about the panel study is reported in the study protocol [ 34 ]. For the present study, we utilised data collected from the sub-sample of informal carers.…”

Section: Methodsmentioning

confidence: 99%

“…Informal carers who were either caring for a person aged 60 years or more or were aged 60 years or more themselves were eligible for inclusion. The age range for inclusion was agreed on in discussions among members of a user forum [ 34 ]. As it is recognised that informal carers are often a challenging population to reach and involve in research [ 11 , 35 ], we prepared alternative recruitment approaches to be used if deemed necessary.…”

Section: Methodsmentioning

confidence: 99%

“…A user-forum method [ 37 ] was used to develop the questionnaire, including data collection methods and procedures. In total, eight users (senior citizens and carer organisation representatives) and three researchers participated in the three, three-hour sessions [ 34 ]. The questionnaire was piloted to assess its readability and estimate the time needed to complete the survey.…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2021

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Background Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/significant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that affects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers’ perceived motivations and obstacles to become involved in research. Methods A cross-sectional survey design was adopted, using first-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were either aged 60+ years themselves or were caring for someone who was aged 60+ years. Results Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic significantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: ‘family motivation’ and ‘the greater good motivation’. These, according to our results, almost equally valued dimensions, described the differing reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men. Conclusion Our study contributes with new knowledge of informal carers’ perceived motivations and obstacles regarding carer involvement in research. Paying attention to the differing motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact. IRRID (International Registered Report Identifier): RR2-10.2196/17759.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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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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User involvement in ageing and health research: a survey of researchers’ and older adults’ perspectives

Kylén

Slaug

Jönsson

et al. 2022

Health Res Policy Sys

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Background User involvement in research has rapidly increased and is often a precondition to obtain research funding. Benefits such as effectiveness and increased relevance of research are described in the literature, but the evidence to support this is weak. Little is known about ageing and health researchers’ experiences and perspectives towards user involvement in research, and their attitudes towards user involvement compared to the attitudes of the users involved are largely unknown. To examine researchers’ experiences and perspectives of user involvement in research on ageing and health, and to compare their attitudes towards user involvement to the attitudes of older adults in the general population. Methods A panel study survey was used to elicit responses from researchers in ageing and health as well as from older adults (aged 60 years and older). The researcher sample (N = 64) completed the survey online, while the older adult sample (N = 881) could choose among three different options to complete the survey (online, paper format, telephone). A professional survey company collected the data. Descriptive statistics, exploratory comparisons and descriptive qualitative content analysis were used to analyse the data. Results More than half (58%) of the researchers had previous experience of involving different categories of users in a wide range of research activities. The most frequent motivation for involving users was to ensure that the research produced is relevant to the target population. A majority (86%) reported benefits, and more than half (59%) described challenges. Differences in attitudes were found between researchers and older adults in the general population. Conclusions Ageing and health researchers involve users in their research to improve quality and ensure relevance, but there is no consensus among them whether users should be involved in publicly funded research. While several challenges were identified, training, institutional support and resources from funders could alleviate many of these. Findings reveal significant differences in attitudes between older adults in the general population and researchers. Further research with comparable larger samples is needed to confirm and understand the possible consequences such controversy might have and how to solve them. IRRID (International Registered Report Identifier): RR2-10.2196/17759.

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Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

Dengsø,

Lindholm,

Herling

et al. 2023

Res Involv Engagem

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Background Over the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited. Objective The aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries. Methods We conducted a scoping review using nine scientific databases and gray literature from 1992–2023. Sources were categorized as empirical or non-empirical. We used the Guidance for Reporting Involvement of Patients and the Public Short Form 2 checklist for reporting of patient and public involvement in healthcare research and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews. Results A total of 56 publications were included, consisting of 39 empirical and 17 non-empirical sources. Gray literature varied among countries and institutions encompassing different types of documents. We found an increase in the number of publications on patient and public involvement in Nordic healthcare research. This was evidenced by the growing number of references and institutional initiatives intended at involving the public, indicating the increasing emphasis on patient and public involvement in Nordic healthcare research. The terminology used to describe patient and public involvement varied over time. However, there has been a gradual narrowing down of terms as the concept of PPI has become more integrated into research practices, particularly with the involvement of funding agencies. Conclusion The utilization of patient and public involvement in Nordic healthcare research has substantially increased, proliferated, and gained widespread acceptance across diverse healthcare domains. The variety of approaches challenged our scoping review in terms of systematic description and impact. Patient and public involvement was applied in one or more research stages using different methodologies and terms. International agreement on terms and definitions is needed for reliable interpretation of the use of patient and public involvement in Nordic healthcare research.

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Awareness of and Attitudes Toward User Involvement in Research on Aging and Health: Protocol for a Quantitative Large-Scale Panel Study

Cited by 4 publications

References 28 publications

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

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

User involvement in ageing and health research: a survey of researchers’ and older adults’ perspectives

Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

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