In addressing the lack of research describing informal carers’ active involvement in research, this study generates new knowledge on informal carers as a specific category of users and their level of interest in being actively involved in research, with a specific focus on their motivations and perceived obstacles to active involvement. Informal carers arguably share a unique perspective as providers of informal care that may simultaneously have their own support needs; therefore, their preferences are likely to differ from those of other user categories [5, 42]. Hence, it is important to listen to the voices of informal carers regarding their involvement in research.
Interest in being involved in research
Overall, the informal carer respondents reported an interest in research. They deemed that informal carers should be actively involved in research into carer issues because of their lived experiences and practical knowledge about informal caring, a finding consistent with earlier research [4, 8, 43, 44]. However, despite their reported interest, fewer respondents were interested in being actively involved themselves. The only statistically significant variable of interest was age, where the odds of being interested in being actively involved in research became lower with increasing age. This reduced interest could in part explain why older people’s voices are, in general, less heard in comparison with other groups [45]. However, this finding contradicts that of Fudge et al. [22], who in their systematic literature review found that older people are interested in being involved in research, especially if the research findings contribute to changes in practice, for example, in services and/or policies.
Motivations for research involvement
Initially, because the factor analysis showed a similar categorisation of motivation items to that of Lakomý et al. [29], we considered using the same labels, i.e. extrinsic and intrinsic. As an example, the item ‘That it leads to change in the situation of my family member’ was viewed as an extrinsic motivation, as it suggests that individuals choose to be involved because it leads to an external reward [46]. In turn, intrinsic motivation was seen as related to societal altruism, e.g. the item ‘To contribute to society’, referring to involvement as internally rewarding, such as by finding something interesting or enjoyable [46], or doing something because it makes oneself feel better. However, when we scrutinised the final eleven items included in the two motivational dimensions (Fig. 1), we realised that referring to the two categories as extrinsic and intrinsic motivations may not be entirely relevant. Rather, we decided to use the concept of ‘family motivation’, as presented by Menges et al. [47], for our first category. Family motivation is a type of prosocial motivation [48], defined as a desire to make extra efforts to benefit and support one’s family. It is deeply connected with one of the most fundamental values in society, caring for the family [47], and often includes both intrinsic and extrinsic motivational elements. In our interpretation, the concept includes both relational and reciprocal aspects, with kinship as a powerful driver of emotional closeness. The second category was named ‘the greater good’, because it was not clear to us that motivations for active involvement in research were for purely intrinsic reasons. As we see it, this category is about a desire to contribute to a social cause viewed as important; however, it is not explicit whether this is for intrinsic or extrinsic reasons.
The informal carers who participated in our study placed relatively similar value on both family motivation and the greater good motivation. Hence, there was a synergy between the different categories of motivational dimensions, consistent with earlier research [2], which has shown that informal carers are motivated by both a desire to contribute to the improvement of carer situations in general as well as by personal benefits [8]. This contrasts with other research, which showed that people are more motivated to be involved in research they perceive as close to their own situation [49]. If the greater good motivation were translated into altruistic reasons for involvement in research, informal carers could be viewed as motivated to become involved in research because of a wish to imbue the lives of carers with greater meaning [2]. Family motivation is likely to motivate informal carers to become actively involved in research, due to the complexity of the caring role and identity, with benefits for both the informal carer and/or the care recipient in a family context [8, 23].
Our results showed that certain characteristics were related to different motivations for active involvement in research. Older age seemed to be connected with an overall lower motivation, a result inconsistent with earlier research, which showed that intrinsic reasons for involvement increased throughout a person’s lifetime [29]. Again, this could possibly be explained by the complexity of informal caring, where earlier research has shown that the perceived caring burden develops and in many cases increases over time [23, 50]. In this regard, the finding that research involvement leading to change in their personal and in the care recipient’s situation is more important for younger informal carers is quite surprising. However, research investigating the association between age and motivation to become involved in research is sparse [30], making it difficult to compare our findings with existing empirical evidence.
The finding that gender was not related to the different motivational factor items also differs from earlier research, which has found that women are more driven by intrinsic motives for involvement in research than men [29]. Previous studies have also highlighted that informal caring affects women more negatively than it does men [15, 51], which may explain why women were more motivated by family reasons. Interestingly, men valued the family motivation factor item, ‘getting to know more about the situation of my family member’ more than women, perhaps suggesting that male informal carers are excluded more often from involvement in the care of their family member, as earlier research has suggested [52].
According to our results, 85% of the informal carers with an education of more than high-school level and 74% of those with an education level of high-school or less were interested in being actively involved in research. According to previous research, an individual’s level of education may be of importance when someone decides whether to become involved in research [29]. Moreover, our results showed that, although family motives were similar despite different levels of education, more informal carers with an education above high-school level were enticed to be involved in research for greater good reasons. This was shown by the response rates to the items ‘to contribute to society’ and ‘being helpful to the researcher’. The latter could perhaps be explained by informal carers having experienced similar situations where they had previously been involved in research projects and were therefore familiar with the challenges this may entail.
Obstacles for active research involvement
Despite a high level of interest and motivations driving informal carers to be involved, obstacles that could hinder their active involvement in research were identified. The most common reported obstacle was a lack of time, which was also shown to be an obstacle to involvement by marginalised populations in a previous study [49]. 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. This is likely to be connected with women experiencing a more strained carer situation, with women helping a family member with personal activities related to daily living to a much greater extent than men [15, 51].
In terms of obstacles to active involvement in research, education seemed to be of importance as well. Our results revealed that those with a lower education were more likely to perceive it as too demanding, suggesting a greater difficulty to be actively involved in research. Although not comprehensively investigated in this study, earlier research has shown that low socioeconomic status, the dimension of marginalisation, and participants’ life contexts are related to greater obstacles to involvement [49]. Hence, there is a risk that the context and structure of the process of becoming involved in research itself systematically excludes some populations from becoming involved or from becoming involved in a meaningful way [54].
Our results showed that age was an important characteristic that was related to several obstacles to becoming actively involved in research. Similar to previous research, old age appears to be associated with whether an individual decides to be involved in research [55]. However, Fudge et al. argued that it is more complex an issue than simply referring to age ‘per se’ as being the main obstacle. Their study suggested that older people experience the same obstacles as younger people, such as a lack of confidence, unfamiliarity with research, medical conditions, language barriers and lack of time [22]. In our study, older informal carers were more likely to identify several of the following obstacles: lack of time, a sense that active involvement would be too demanding, and researchers’ lack of competence in engaging informal carers. Self-reported poor health was related to viewing their own illness, disability or other hindering private situation as an obstacle. This suggests that health issues, which become more common with increasing age, combined with being an informal carer, rather than age itself, may constitute important obstacles. These findings support the views of Fudge et al. [22], namely, that it might be too simplistic to state chronological age as an obstacle to active involvement in research.
It could be argued that obstacles to active carer involvement in research are possible to overcome. To do this, it is necessary to look further into and explore more flexible, creative, time and energy efficient research methods and recruitment strategies, which could help to attract a more diverse range of informal carers. However, this demands efforts to be made by researchers (and the organisations where they work), such as curiosity, respect and giving the involvement process sufficient time and resources. With regards to resources, previous research has highlighted the importance of sufficient resources to enable carers to feel valued and respected for their contributions, for example, having sufficient research funding to pay for respite care in the home so that the carer can leave the home for a few hours to participate in research activities. As well, paying salary costs to enable working carers (carers who balance paid work with informal care) to leave their paid workplace for several hours to engage in research. Resources can also usefully include transport and/or transport costs and remuneration costs to at least partially compensate carers for their time and efforts. Further, attention to seemingly small but significant practical details is highly relevant. For example, ensuring a warm and welcoming climate by providing opportunities for a lunch together prior to the start of a research activity and/or ensuring sufficient time for coffee and tea breaks with favourite snacks to stimulate interaction and the building of trusting relationships [56, 57].
Researchers also need to be aware of the often unequal and asymmetric situation between themselves and the participating informal carers [8]. Future research should explore other kinds of heterogeneity within the carer collective, including specific carer characteristics, such as who they are caring for (e.g. a parent, spouse or child), the care recipient’s illness or disability, and the length and nature of the caring relationship.
Methodological considerations
This study has some limitations that should be mentioned. The recruitment strategy was adjusted twice to increase the number of respondents. As a result, it was not feasible to accurately determine the response rate, resulting in a potential selection bias and impeding the generalisability of the results. Therefore, this study should be considered as an illustration of possible motivations but also obstacles that may be encountered when involving informal carers in research. The data collection channels used in our study may have been more favourable to certain groups of informal carers (for example, members of a carer organisation and carers known to formal care services), as the decision to only offer the survey in an online format for those recruited through referral sampling may have hindered participation of older carers and/or carers whose voices are seldom heard. On the other hand, a recent report showed that 96% of the Swedish population (16+ years) have access to the internet [58].
More broadly, the recruitment challenges may arguably be indicative of the overall situation for informal carers generally in Sweden which has led to them being a relatively hidden group. Given the history of a generous social democratic welfare regime operating in Sweden where the State provides for its citizens from the cradle to the grave, there tends to be a low level of awareness of the existence of informal carers among society at large in general, and also by a number of health and social care professionals and decision makers in particular. This lack of awareness and recognition also exists at an individual level as many carers tend not to self-identify as carers (see Introduction above). It can be argued that this situation is mirrored by the lack of a strong, specific legislative framework for carers with comprehensive rights and supports in place regardless of the carer’s geographical location. Thus, other European countries with more liberal welfare regimes and less formal service provision for frail older and/or disabled people tend to have more statutory rights and (in theory) more extensive services for carers, together with greater recognition of informal carers within all levels of society, see for example, the UK and Ireland [59].
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]. Due to the exploratory nature of this study, we chose not to adjust the level of alpha, p < 0.05, even though we performed a large number of statistical comparisons, which could increase the risk of a Type I error. Hence, the results of these comparisons should not be considered definitive but rather be used to generate specific hypotheses to be tested in future studies.
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. In addition to the empirical results presented, the methodological insights gained are valuable in their own right.