Lifeworld in co-designing with informal carers

Andréasson, Frida; Aidemark, Jan; Magnusson, Lennart; Strömberg, Anna; Hanson, Elizabeth

doi:10.1108/jet-05-2018-0023

Cited by 6 publications

(14 citation statements)

References 21 publications

(30 reference statements)

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“…Informal carers, particularly those carrying out extensive caring activities, may often experience a strained everyday life. Caring for a partner/spouse may occupy the main part of their day, and informal carers may not have the opportunity to either prioritise or devote their limited spare time to involvement in research [ 53 ]. We found that women perceive lack of time to be more hindering than men do.…”

Section: Discussionmentioning

confidence: 99%

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%

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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“…There is also a risk of excluding vulnerable groups because of difficulties reaching them and communicating effectively (Gradinger et al, 2013). In the UserAge program, we are studying user involvement in interdisciplinary research targeting several different categories of users, for example, informal carers (Andréasson et al, 2019; Malm et al, 2019). We argue that studies involving well-defined target groups are necessary to elucidate differences and similarities regarding user involvement in research in different populations, thus informing future research and development.…”

Section: Discussionmentioning

confidence: 99%

Understanding User Involvement in Research in Aging and Health

Iwarsson

Edberg

Ivanoff

et al. 2019

Gerontology and Geriatric Medicine

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User involvement in research is advocated as an avenue for efficient societal developments. In this article, we identify potentials, problems, and challenges related to research on aging and health, and identify and illustrate research priorities using an evolving research program as an example. Involving user representatives in the development phase, the UserAge program engages researchers at four universities in Sweden. The program builds upon previous and ongoing research with user involvement. The goals are to maximize the impact of user involvement, enhance the execution of high-quality research, increase the knowledge about what difference user involvement can make, and evaluate the impact of research about and with user involvement. Taken together and communicated in the international scientific community as well as in a wide range of public arenas, the empirical results, capacity-building, and modeling efforts of UserAge will have an impact not only on the present situation but also on the future.

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“…It would have been beneficial to have recruited a larger sample of carer participants, including carers that were not part of a carers’ organization. Nevertheless, the challenges of recruiting carers to participate in research have been previously documented; these challenges are principally due to carers’ caring situations, such that they are often unable to prioritize their limited “own” or “free time” to devote it to participating in research (Andréasson et al , 2019). However, referring to the strained situation of carers could on some occasions be argued as being an excuse on the part of researchers to refrain from involving carers directly.…”

Section: Discussionmentioning

confidence: 99%

“…Full and informed written consent was secured from all participants (WMA, 2013). It was recognized that participating in an interview could be viewed as potentially therapeutic, yet it could also involve the risk of possible recall of personally emotive and/or challenging caring situations (Andréasson et al , 2019). The first author (CM) is an experienced social worker with extensive experience of working with families, so she was able to offer support in the event this was deemed appropriate.…”

Section: Methodsmentioning

confidence: 99%

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Moving beyond the first response phenomenon

Malm

Andersson

Jönson

et al. 2019

IJSSP

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Purpose In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work. Design/methodology/approach A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations. Findings Core findings included carers’ discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy. Research limitations/implications Limitations included the relative lack of male carer participants and the convenience sample. Practical implications Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement. Originality/value There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

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Lifeworld in co-designing with informal carers

Cited by 6 publications

References 21 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?

Understanding User Involvement in Research in Aging and Health

Moving beyond the first response phenomenon

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