Stakeholders’ perspectives on adapting the World Health Organization iSupport for Dementia in Australia

Theoretical perspective

Bandura’s self-efficacy theory was applied as a theoretical framework to inform the present study (Bandura, 1993). This theory was originally developed to assess student learning in formal education. According to this theory, a learner will experience a learning journey through cognitive, motivational, affective and knowledge to action processes (Bandura, 1993). Cognitive processes require learners to be familiar with core knowledge and skills in a practice area (Bandura, 1993). Engaging learners to set their own care goals in collaboration with learning facilitators is viewed as an effective strategy to activate the learner’s intrinsic motivation to learn (Bandura, 1993). Learning from role models is another strategy to stimulate the learner’s motivation to learn (Bandura, 1993). Affective processes mean learners will inevitably encounter difficulties and experience emotional stress; therefore, support to deal with difficult situations is essential (Bandura, 1993). Knowledge to action processes requires learners to select a course of action that suits their situation (Bandura, 1993).

The WHO iSupport is an ideal programme for informal caregivers to build dementia knowledge and skills as it is evidence based. Creating an enabling environment, for example through caregiver support groups, will motivate informal caregivers to learn and help overcome difficulties and emotional stress. Moreover, sharing knowledge and experiences in dementia care with peers will facilitate informal caregivers to select a course of action to improve their practices and care outcomes.

Aim of the study

The aim of the study was to identify stakeholders’ perspectives on adapting the WHO iSupport programme for use by informal caregivers of people with dementia in Australia.

Participants and data collection

The study was conducted in one Australian state in community aged care settings in collaboration with two large dementia and aged care service provider organisations. One organisation was a branch of a national dementia service that supported approximately 34,918 people living with dementia and their caregivers. The other organisation provided community aged care services to 10,000 older people.

Informal caregivers were invited to participate in the study if they were: (1) 18 years of age or older, (2) a primary informal caregiver of a person with dementia and (3) in the caregiver role for at least 1 year. Caregivers were excluded if they were unable to comprehend written and spoken English as they were required to access and read the WHO online English version of the iSupport programme and provide feedback. Care staff were invited to the study if they were employed as caregiver support group coordinators or case managers of dementia care services. Participating organisations distributed participant information packs to potential participants who then contacted the principal researcher if willing to participate.

Data collection was undertaken in May–July 2018. A semi-structured focus group discussion guide based on the WHO ‘iSupport version 1.0. Adaptation and Implementation Guide’ was developed (see Table 1). Informal caregivers and care staff participated in separate focus groups. In total, we conducted two focus groups with informal caregivers and two focus groups with care staff. Focus group discussions were undertaken in the meeting rooms of participating organisations and facilitated by two researchers. Prior to focus groups, informal caregiver participants were given access to the WHO iSupport portal so that they could review the programme and make notes regarding their perspectives on the ease of access, functionality, feasibility, user-friendliness, and barriers and enablers when implementing the programme. During each focus group, the researchers displayed the iSupport portal to show the programme and facilitate discussions. The discussions lasted around 120 minutes. All focus groups were audiotaped and transcribed verbatim for data analysis.

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Table 1.

A semi-structured focus group discussion guide.

Questions for informal caregivers	Questions for care staff
1. Would you use it?	1. Would informal carers use it?
2. How often?	2. What would be a facilitator to encourage them to use it?
3. What would be a facilitator to encourage you to use it?	3. What are barriers to using it?
4. What are barriers to using it?	4. How can an internet program like this one address their main needs?
5. What would you change the iSupport program?	5. How would you adapt the program to address these needs?
6. How would you adapt the program to address these needs [show examples from modules]?	6. What can be added or taken out?
7. What can be added or taken out?	7. What would make the program more acceptable for informal carers?
8. What topics should be covered on the iSupport program?	8. On a weekly basis, what do you think is feasible for informal carers in terms of time spent on the program?
9. On a weekly basis, what is feasible for caregivers in terms of time spent on the program?	9. Please share your ideas for improvement
10. Ideas for improvement

Data analysis

A 4-step thematic analysis procedure that reflected the interpretive description design was applied to data analysis (Thorne, 2016). First, each transcript was read by two researchers to gain understanding of participants’ views of how to adapt the iSupport to an Australian social context. Second, meaningful words in each transcript were highlighted and coded. Third, these codes were compared across all transcripts and were further reduced as categories based on similarities of meaning. Fourth, regular team meetings were held to elaborate the potential themes from the coding process and to reach a consensus. The final themes addressed the aim of the study.

Ethical considerations

Ethical approval for this project was gained from the Social & Behavioral Research Ethics Committee of Flinders University (Project number: 7900). Informed consent was discussed with participants in face-to-face meetings prior to focus group discussions. Participants were reassured of their rights to either participate or to decline to participate in the study. Participants were also reassured that their identities and any information they shared in the focus group would maintain confidentiality in any reports of the study. Data from audio recordings of focus groups were stored in a secured and password-protected platform, Flinders University OneDrive, according to the university policy.

Study rigour

The study complied with credibility, dependability, confirmability and transferability for qualitative research (Lincoln & Guba, 1985). Credibility was achieved using audio recording of focus groups and transcribing verbatim. At the end of each focus group, the researchers provided participants with a summary of the main points discussed and an opportunity to revise. Two of the researchers (LX and LJ) built a sustainable research collaboration with the participating organisations and established rapport with study participants through their long-term engagement with them. Dependability was addressed by adhering to the study design and methods, and using excerpts from transcripts to support findings. Two researchers (LX and AMP) were the main contributors to the WHO iSupport for Dementia Programme and played a key role in ensuring the Australian adaptation met the international WHO iSupport adaptation guidelines. Regular online meetings and email communication with the WHO iSupport team were undertaken to discuss adaptation issues and to gain approval for recommended changes to the iSupport programme. Confirmability was emphasised by taking notes on non-verbal communications during each focus group discussion and using these notes to support the data analysis, and by team member cross-checking of data analysis. Transferability of the findings was addressed by discussing the social context of the study and applications of findings.

Opportunity for an online one-stop shop for informal caregivers

Informal caregivers had the opportunity to access the WHO iSupport portal and felt the need for such a programme. They discussed this in informal caregiver focus group 1:

Informal caregiver: As a [family] carer you feel like you are swimming in a dark room and question yourself – this is when you need information like this [iSupport].

Most care recipients who were cared for by informal caregivers in the study were in the moderate to late stage of dementia. Informal caregivers faced challenges when dealing with changed behaviours and they suggested:

Dealing with frustration and things relevant to later stages are more important and would like to learn behaviours – anything to help later stages like refusing to do things (informal caregiver focus group 1).

Informal caregivers would like to see the Australian iSupport connected with existing dementia and aged care services as they discussed in informal caregiver focus group 1:

Informal caregiver: So the way it works is it will give you the number or the website address to go to directly. It’s one way of you actually connected to the services that are available.

Managing care services was a significant part of informal caregivers’ role and they sought online communication with service providers about this:

So you’ve got a box in there [on the website] you ask for help, and you type a question there, it actually goes as an email back to someone who will come back to you and respond (informal caregiver focus group 1).

Informal caregivers’ information needs also relate to their role in coordinating care services for the care recipients. Informal caregivers felt they needed to know these types of information about services as they discussed in informal caregiver focus group 1:

Informal caregiver: Where are the support groups? And things like support groups listed in there, correct time and place, build in links.

Care staff reflected on their clients from diverse backgrounds who spoke a language other than English at home and had different care needs associated with their ethnicity and culture. Care staff strongly recommended the need to have ‘iSupport for the Aboriginal and Torres Strait Islander peoples and for CALD [culturally and linguistically diverse] communities’ (Staff focus group 1).

Integrated online caregiver network

All informal caregivers in the study had some involvement in face-to-face caregiver support group activities. They reflected on the benefits gained from these activities and strongly recommended that an online caregiver support platform via iSupport would make it easy for them to share their learning experiences, as they discussed:

Everyone must have same or similar problems and what has worked for them. I can see where Dick’s offering his discovery that works for him and he thinks actually other people be able to learn from that and he’d like to tell somebody online straightaway (informal caregiver focus group 1).

Care staff echoed the same recommendations:

You know, someone might not have thought about doing that, so that could be a link for them [informal caregivers] to read the discussions within their groups and help each other (Staff focus group 1).

As informal caregivers experience a range of costs and in some cases a loss of income due to their caring role, they were seeking access to low-cost support subsidised by the government. Online caregiver support was viewed as a low-cost option for them:

We like to see the iSupport to pull them [online caregiver forum and information on dementia] together, so we’ve got everything we need and we’ve got covered. We mentioned we generally try and cover all the government services first because they’re either free or fee limited. So, we don’t go into all the private services because we can’t afford the services (informal caregiver focus group 2).

Informal caregivers strongly recommended that an online caregiver network attached to iSupport would also improve social support for them as they discussed in informal caregiver focus group 2:

I hear people sort of saying that they’re isolated at times or feel isolated from help. Is there any consideration to have an online blog so they can type questions to link to other carers?

Informal caregivers would prefer to stay in the same group they formed in face-to-face meetings through their dementia care service providers as they discussed in informal caregiver focus group 1:

Informal caregiver: The website needs to link up to the group, and I can just share comments and people can answer you, I did this, and I did that.

These discussions supported the affective processes of learning in self-efficacy development. Informal caregivers developed social bonds and relationships with group members and felt safe to disclose their attitudes and emotional reactions to the challenges they encountered.

Role of dementia care staff in promoting the iSupport to informal caregivers

Care staff were concerned about the various levels of computer literacy among informal caregivers who were predominantly older females and had not previously been exposed to online education and training. Care staff felt informal caregivers might encounter difficulties in logging in and utilising iSupport. Care staff suggested strategies that would support informal caregivers to feel comfortable to utilise iSupport:

If we have a coordinator to get [informal] carers together and introduce them to it [iSupport] and that might encourage them to then go and have a look themselves, or, as a group, we sit around a laptop or something and say okay, this is what it looks like, and just show them a little bit, and that will actually break down some of those barriers (Staff focus group 1).

Care staff also identified the need to have iSupport to complement the face-to-face education they usually provided to informal caregivers via home visits, as they discussed in staff focus group 2:

Care staff: If the person with dementia is in the room when we’re doing the home visit, sometimes it’s a little bit difficult to talk around changes and responses to the changes. It makes that person with dementia feel uncomfortable and think that they don’t have any of these changes and responses we talk about.

Care staff perceived stimulating informal caregivers’ motivation to learn more about dementia care was a way to engage them in iSupport. Care staff reflected on their experience in working with informal caregivers in face-to-face forums to discuss problems encountered in home care settings. They believed that the forums were the right place and right time to motivate informal caregivers to learn the iSupport and to discuss how to translate knowledge into everyday care, as they discussed in staff focus group 2:

They [informal caregivers] usually go to our face-to-face forums regularly and you could actually encourage them to do it [iSupport] and trial some recommended actions.

Care staff particularly embraced iSupport implementation in rural and remote areas where resources and support mechanisms for informal caregivers were limited. As they said:

It’s also good for rural areas because we’ve got staff at XX [a rural place] and XX [a rural place] and so forth and they’re finding it difficult because of distances to clients and their isolation’ (Staff focus group 2).

Care staff also suggested the involvement of local councils in promoting the iSupport:

It would be other service providers and local council. It’s everyone working together, having it on a training board where they can see where local courses are coming up or whatever I think that would probably be very useful as well (Staff focus group 2).

Discussions on iSupport implementation strategies revealed the need to have a systemic approach to promote the programme to informal caregivers in country regions. In order to do so, a careful plan and consultations with stakeholders during the iSupport development phase are much needed.

Time commitment to participate in the iSupport programme

Informal caregivers fully contributed to their caregivers’ role and felt overwhelmed. Therefore, finding a quiet time by themselves to study iSupport in the house would be a challenge, as they discussed in informal caregiver focus group 1:

Informal caregiver: Sometimes if you’re very, very tired and you have to read and you’ve got a computer, it’s just too hard.

Informal caregivers perceived physical and mental stress associated with their caregiver duties was a factor affecting their energy to learn iSupport. Keeping iSupport simple but helpful for informal caregivers in problem-solving would help to overcome time challenges. Care staff were also concerned about the time informal caregivers would commit to learning iSupport, as they discussed in staff focus group 2:

Care staff: My issue is it’s around their time to be able to access something like this [iSupport] with a person with dementia who may want their attention the whole time.

Engaging the family as a unit in iSupport may be particularly suitable for older female informal caregivers who also often have low health literacy and computer literacy. This strategy may also enhance support from family members in dementia care, especially in the late stage of dementia.

Expectations of user-friendly iSupport

Reflecting on their busy schedule and duties, informal caregivers expected the iSupport to help them to identify solutions for problems they encountered in a much easier way as they discussed in informal caregiver focus group 2:

Whereas if you had a short video clip that you go, oh I just need the half an hour and you click on the video clip that may be helpful.

Providing short videos with voice-over explanations may be quicker for informal caregivers than reading information. Informal caregivers also expected the iSupport search function would assist to identify specific learning units easily, as they discussed in informal caregiver focus group 2:

Informal caregiver: Make links to solutions to specific problem.

Building a website solution that incorporated user-friendly keywords for searching, grouping learning modules and units in an order that suited informal caregivers’ learning needs, and linking related learning units may address these expectations. Informal caregivers also expected information technology used in the iSupport to have these features, as they discussed in informal caregiver focus group 2:

Informal caregiver: Programmes can be too complex – keep structure simple.

Informal caregivers would like the iSupport to enable them to easily seek help from care service providers, as they discussed in informal caregiver focus group 1:

You used a system like these links [hyperlinks built in the iSupport] where you send an email to someone. You ask for help you. That might be a way of doing it rather than ringing someone up.

Strengths and limitations of the study

The strength of the study is demonstrated by the researchers following the WHO iSupport Adaptation and Implementation Guide. The findings add new knowledge to the WHO iSupport database to facilitate knowledge exchange in supporting informal caregivers. However, due to the use of a qualitative study design, findings cannot be generalised but can be transferred to similar social and cultural contexts. In addition, in this study, informal caregivers cared for people in the moderate and late stages of dementia and were from the mainstream cultural backgrounds in Australia. Therefore, findings cannot be generalised to informal caregivers who care for people in the early stage of dementia or to Aboriginal and Torres Strait Islander peoples, ethnic minority groups or those who are identify as LGBTIQ+ (Lesbian, Gay, Bisexual, Transgender, and Intersex and Queer).

Implications for policy, resource and practice development

Findings have implications for policy development to strengthen support for informal caregivers. It is imperative to invest in the iSupport to complement face-to-face education and training for informal caregivers and to support aged care service providers and other stakeholders to promote the iSupport. The iSupport can be a self-directed education and training programme for informal caregivers when they need it from time to time throughout their caregiving journey. The iSupport can also be advanced to meet the expectations of informal caregivers to interact with peers through an integrated caregiver support network managed by dementia and aged care service providers. In this case, iSupport would be an adjunct to care services for clients. Informal caregivers’ expectations of user-friendly iSupport using information technology have implications to co-designing with stakeholders a web-based solution to meet their needs.