“You Don’t Feel Alone”: Perceptions of the My Tools 4 Care-In Care Web-Based Interactive Toolkit

Setting and Sample

The participants for the larger study were recruited in a variety of ways, including partnering with local Alzheimer Societies, older adult LTC homes, and advertising in newspapers; this is described in detail elsewhere (Duggleby et al., 2017). Participants for the qualitative interviews were selected purposefully from the intervention group based on demographic characteristics to ensure the sample had theoretical sufficiency (Tight, 2024). Recognizing the different population sizes in each province, we aimed to interview 15 participants in each of Ontario and Alberta, and five participants in each of Manitoba and Saskatchewan, for a total of 40 interviews. Participants were selected from the intervention group as they needed to have access to the toolkit and had used it prior to responding to the interview questions. Initially, the goal of recruitment was to seek variation according to carer gender, carer age, carer ethnicity, relationship, and the stage of dementia of the resident, but recruitment challenges during the COVID-19 pandemic, participant withdrawals, and not always using the toolkit created a need to be less selective to reach our target sample size. Additionally, difficulty with recruiting participants from several provinces, and several withdrawals from the intervention group, created a need to over-sample from Ontario to reach the intended target. Our final sample size included 39 participants.

Data Collection

The identified participants were asked to complete a qualitative interview using a semi-structured interview guide during their 2-month follow-up audio-recorded phone call by trained research assistants. The interview questions were developed by the research team reflect the research aims, and piloted by research assistants within each province during research assistant training, prior to their use with participants in the study. For purposes of the current study, we focus on the questions related to the usefulness of MT4C-In Care. This included questions about what participants were thinking when they used the tool, if they felt the toolkit supported them in the ways they dealt with changes and loneliness, or if the toolkit promoted social support, hope, self-efficacy or quality of life and in what ways. We also considered the parts of the toolkit participants was helpful and if not, how we could best adapt it to make it more so.

As part of the larger study, research assistants at each of the pan-Canadian study sites completed data collection (baseline, 2 months, and 4 months) with the participants which included the collection of quantitative measures: quality of life, self-efficacy, hope, loneliness, grief, and perceived social supports. Qualitative interviews occurred following the 2-month data collection phone calls and consisted of open-ended questions regarding their experience with the tool. The interviews lasted approximately 20 min. Audio-recordings were uploaded to a secure site and transcribed by an experienced transcriptionist who signed a confidentiality agreement.

Data Analysis

The interview questions (related to the usefulness of the tool) provided structure to deductively analyze the transcripts using content analysis (Hsieh & Shannon, 2005). Directed content analysis supported the description which sought to understand the acceptability, useability, and usefulness of the MT4C-In Care tool. After research assistants cleaned the transcripts, the first step of analysis involved reading and rereading the transcripts to get a sense of the participants’ experiences when using the tool. Operational definitions of key terms—useability, acceptability, and usefulness—were developed to support the initial coding. Using three transcripts, four research team members (two experienced qualitative researchers and two novice research assistants) independently highlighted any text that represented the predetermined key terms, this text was then coded. Text that did not fit one of the predetermined key terms was retained and labeled separately (to be considered later). The team then came together to compare initial coding and develop a codebook. Subsequent coding was undertaken by the two research assistants who each coded half the transcripts, with any questions or concerns brought to the team for discussion. The resulting codes were then subsumed under the appropriate category. Frequent team discussions and consensus building was done throughout the analysis process to ensure analytic rigor. Data management was done with an Excel spreadsheet to capture the codes and categories.

Trustworthiness

 The current study adhered to standards to ensure rigor and trustworthiness. For instance, across the research sites, the same semi-structured interview guide was utilized; the same research assistant(s) contacted and interviewed the participants at each site for consistency in data collection. Data collection and analysis occurred simultaneously to ensure data being collected reflected the intent of the study. Research team meetings occurred monthly, and concerns were discussed among members to support the research assistants. These meetings were vital to shared communication and facilitated data analysis in order to support the project’s integrity.

Reflexivity: Disclosures of positionality and incorporating the ongoing practice of reflexivity for the academics and researchers on our team were employed to bring humanity and greater awareness within our research. In making our cultural assumptions explicit by acknowledging Eurocentric academic traditions, paternalistic healthcare practices, ageism, sexism, and ableism, we are taking steps toward actively challenging unconscious biases camouflaged in otherwise well-intentioned research.

Ethical Considerations

 Prior to initiating the study, ethical approval was obtained from Research Ethics Boards in each province (University of Alberta Health Research Ethics Board (#Pro00090771); University of Saskatchewan Research Ethics Board (#1385); University of Manitoba Education/Nursing Research Ethics (E2019:127), and the Hamilton Integrated Research Ethics Board (#7659)). In the current study, verbal consent was obtained prior to each interview and interviews were conducted at a time that was convenient to the participants.

Acceptability

The participants used MT4C-In Care as it was designed to be used—a key component of acceptability (Bowen et al., 2009; Dillon & Morris, 1996). To understand acceptability, perceptions of the MT4C-In Care Toolkit as a suitable and adequate tool to support carers of persons living with dementia who reside in LTC were assessed. A key goal of the MT4C-In Care intervention is to increase carers’ hope, social support, and general self-efficacy, decrease their grief and loneliness, and to improve their mental health and quality of life. In this way, participants identified that, for those who may have experienced challenges in this regard, MT4C-In Care would be of great benefit:

Someone who has a lot of issues in their life or has a hard time coping with all of the stressors that they’re having to take over in their life - they might find this more comforting to read through some of this stuff and be comforted by it [23]

In particular, participants commented that MT4C-In Care would be highly acceptable for those carers who have just had their family member living with dementia move into the LTC facility; a transition that is fraught with emotions: “people who have just had someone admitted to a nursing home I think would be – I think it would be a wonderful tool for them. And I guess that would be my main focus” [238].

Part of this acceptability came from the provision of resources and stories that captured carers’ experiences. However, many participants commented that even more resources could be added to the toolkit to provide further support, particularly for those who had been carers for a long time: “I would say the part I like best is that, again, the prompts of like, what to think about and the resources that were available. . .I think that there’s more resources that can be added to it [277].” Moreover:

It’s kind of superficial and again, it’s only for [a] beginner. There’s other more advanced resources or questions for advanced caregiver. Those who have been there for a long time. Such as life after death, palliative but grief, you know, I don’t think there’s an area on that, right? [244].

While many participants’ comments reflected the acceptability of the online nature of MT4C-In Care, it is notable that for some, it did not replace face-to-face connections:

I understand that there’s this thing online. But that doesn’t translate into there actually being something at the assisted livings or long-term cares or wherever to help the people adjust, right, or to help families at all. And so, yeah, doing the stuff online sort of is – better than nothing. . . But it – it doesn’t translate into actual action that seems helpful [08].

Usability

In assessing perceptions of usability, data were examined for participants’ descriptions of their ease in using MT4C-In Care. The online format of the toolkit was seen as easy to use with most participants commenting that “It’s simple. It’s easy to navigate” [35], “the fact that it was online made it really, really convenient” [206]. The toolkit was identified by many as being user friendly: “It was user friendly. I really like things that are user friendly, like you don’t have to click a million places. And it saved my answers. So that was good. And I could go back [518].” However, while the online nature of the toolkit both contributed to its usability by being conveniently accessible and easy to navigate, it could also be a drawback for those who preferred to complete the writing exercises in a paper and pencil format:

Sometimes I would prefer to work on paper as opposed to on the computer and I did try to run it off but I found that it only gave me one page at a time or that it was too time consuming for me to run it all off so I just didn’t bother [238].

Being online allowed participants to access the program anytime, however, for some, being in front of a computer was not how they wanted to spend their time:

It’s extra time I would say. Because you know, I work from nine to five and I went through the kit in the weekend but in weekend I would rather not be spending my time on this toolkit online. I would rather do some other relaxing activities, you know. So, this is – this toolkit is pretty intensive and need a lot of time, sitting and doing paperwork, which I would not prefer to do [244].

For others, an online toolkit felt limited in its usability due to the personal nature of the content, and the motivation it required to complete. One participant commented that: “not everybody can put their feelings, you know, on a computer. . . it’s too personal” [222], while another summed it up by stating: “time, energy, and motivation. . . I think what I felt that I was – I had, given my permission or okay to be part of this survey and then it seemed like there was one more thing that I had to do [513].” Usability, in particular, seemed to have a gendered component with males noting that the writing and reflection activities may not have resonated with them as much:

The other is just a personality thing. . . a lot of things were. . . I’d say like more personal in nature and touchy feely. . . I found that a lot of the exercises and things that were going there didn’t match that sort of personality [18].

Usefulness

Participants provided many descriptions of their perceived usefulness of MT4C-In Care; that is their belief that using the tool would increase their performance in some regard or their ability to function (Dillon & Morris, 1996). Overwhelmingly, the usefulness of the tool was seen first, to validate and normalize carers’ feelings, second, to help give them permission to focus on their own self-care and mental well-being, and finally in helping to strengthen their caregiving knowledge.

Acceptability

 Acceptability of the MT4C-In Care tool related to its aim of supporting carers with the transitions they face when their relative with dementia lives in LTC. Hirschman and Hodgson’s (2018) review emphasizes the importance of additional research regarding the transitions that carers of people living with dementia experience; however, little research has been done on web-based interventions, including specific to the LTC setting. This was confirmed in a recent scoping review by Groenvynck et al. (2022) in which none of the interventions reviewed to improve the transition into LTC were web-based. Effective interventions are those that include the person living with dementia and the carer in decisions of goals for care and provision of education about what to expect (Hirschman & Hodgson, 2018). The MT4C-In Care intervention attempts to address these outcomes by providing supports in the form of real-world stories, writing prompts and resources to achieve this goal. Ultimately, the inclusion of resources (and prompts to use them) is a strength of MT4C-In Care though some participants wished for more resources to be added while others were overwhelmed by their number.

The access to resources in an accessible, timely manner is a strength of MT4C-In Care and other web-based interventions and tools. Indeed, the current study aligns with Hopwood et al.’s (2018) systematic review of web-based interventions which acknowledges the positive response carers have to web-based interventions. This access proved invaluable given the lack of support available during the COVID-19 pandemic but may have contributed to the feelings of some carers not wanting to go on-line more frequently with the shift to remote work. Further research is warranted to determine if these feelings remain in times when work is not fully on-line.

Building on telephone and internet-based interventions to support carers of those living with dementia (Marziali & Garcia, 2011), it is acknowledged that often, contact with health care professionals and/or other carers can be a desirable component of web-based models (Davies et al., 2020; Hopwood et al., 2018). In the current study, several participants acknowledged that a web-based platform alone was not ideal to meet their needs to interact with health care professionals or peers, however, given the national scope of MT4C-In Care, chat functions or video conferencing features have not been integrated. Instead, links are provided for carers to join existing chat groups. Future research may explore the feasibility of integrating these other kinds of options into MT4C-In Care.

Useability

 The ease of using and navigating a web-based tool is essential to its success; this was borne out in the findings from our participants in the present study. In a web-based intervention by Lewis et al. (2010) for community-dwelling carers of people living with dementia they found that their participants suggested the need to make navigating their tool easier; a finding not reflected by our current participants. The difference in our finding is likely due to the design of our respective interventions and not sample characteristics.

The motivation to engage with the tool was brought forward by some of our participants, a noted challenge in other studies addressing web-based interventions (Stjernswärd & Hansson, 2017). This may be reflective of the COVID-19 pandemic’s effect on moving much work to an on-line environment. However, in their study of an on-line mindfulness intervention, Stjernswärd and Hansson (2020) noted that participants indicated their participation as more or less timely depending on their life circumstances and caregiver situation at the time of the intervention period.

In our study, participants identified that an option for a paper or hard copy of some parts of the MT4C-In Care tool would be beneficial, and to decrease time spent on a computer. This observation was similar to Lewis et al.’s (2010) web-based tool where participants suggested an accompanying workbook would improve the tool. Printing off information as an option is important to our study and Lewis et al. (2010) as this provides options for carers to tailor how they engage with a (web-based) intervention. Yet, it is important to bear in mind that not all aspects of the intervention (e.g., outside resources) have the option to be in a print-based format, and that asking participants to print off information uses their own time and resources, which may contribute to inequities in who can access this information based on economic or other factors.

 Some participants appreciated and valued the sections of MT4C-In Care that offered support for reflection—but not all participants desired to use this aspect of the tool. MT4C-In Care is self-administered, and carers are encouraged to engage with the aspects that they find most helpful. This finding emphasizes the need for interventions that are tailored to different carers (Hopwood et al., 2018), including gender-based differences. This is borne out in research that indicates positive results are most often obtained with psychoeducational interventions that are tailored to the needs of their users (Williams et al., 2019; Zhao et al., 2019).

Usefulness

In our study many participants appreciated the direct quotes used in the tool as this was a means for them to feel validated that others had similar experiences. As a result of this, we have developed short films to additionally support the connection carers may feel when using MT4C-In Care. Similarly, Lewis et al.’s (2010) participants also valued being able to relate to what other carers had experienced and that their supporting videos were recognized as beneficial for participants. Being validated was also reported by Scott et al. (2022) as an important outcome of their e-learning intervention.

 Engaging in self-care is a complex, yet challenging activity for carers of people living with dementia, yet is necessary to their well-being (Waligora et al., 2019). The benefits of self-care for carers of people living with dementia is highlighted in Oliveira et al.’s (2019) scoping review, including within web-based interventions. Participants using the MT4C-In Care toolkit emphasized the benefits of being prompted to care for themselves; something that too often carers fail to give themselves the space or time to do (Wolverson et al., 2022). Being engulfed by the caregiving role and losing a sense of self has been previously described (Skaff & Pearlin, 1992) and can be detrimental to a carer’s well-being (Sörensen & Conwell, 2011). Giving permission to carers to take time for themselves is vital to ensuring their on-going health and further research is warranted to find ways to support carers in this regard.

Having a better understanding of dementia and how to provide care in LTC as a family member was supported by users of MT4C-In Care. Similar studies examining online psychoeducational interventions for community-based carers noted similar effects to the current study with reports of higher feelings of mastery over caregiving and a better understanding of the disease process (Boots et al., 2014; Hepburn et al., 2022). However, given the lack of online interventions targeted at carers within LTC, future research is warranted.