Relatives’ engagement with REACT: qualitative data

Method

Rationale and design

This section of the IMPART study had a qualitative design to allow relatives’ views and experiences of the implementation of REACT to be captured through a semistructured interview format. The key research question addressed was ‘What are the factors affecting relatives’ engagement with REACT?’.

These data were not analysed in waves, as the iterative nature of the implementation plan design was aimed at changing staff behaviour and getting more invitations sent to relatives, rather than changing the way in which relatives engaged with REACT.

The small number of relatives interviewed from each trust also prevented generalising to the experience of other relatives in that trust. However, we have highlighted instances when the study wave or elements of the implementation plan appear to have relevance, and explore this in the discussion.

The methods are described in detail in Chapter 4. Characteristics of the participants and the key themes are described in the following sections.

Participants

Twenty-three relatives participated in the study, all of whom had internet access at home. Table 23 shows the demography of the sample.

Relatives were recruited from five of the six participating trusts. We were unable to recruit any relatives from Lakes, and recruited the most relatives from Seashore. This pattern reflected the number of relatives agreeing to take part in the quantitative measures described in Chapter 5.

There was a high degree of variability in the use of REACT. The mean time spent on REACT was 63 minutes, substantially higher than the mean for all relatives (40 minutes, see Chapter 5). However, this group included relatives who did not use REACT at all, and others who spent nearly 5 hours on REACT. The amount of time spent by each participant on each module and on the forum is detailed in Report Supplementary Material 2.

As described in Chapter 4, emerging themes in the interview transcripts were visually identified by use of sticky notes. The final wall of notes is seen in Figure 17. The final thematic analysis of factors that influenced relatives’ engagement with REACT elicited four overarching themes and associated subthemes, summarised in Box 1.

FIGURE 17 Sticky notes used to identify emerging themes of relatives’ engagement. (Figure not reproduced here; see the original article.)

The relationship between these themes is presented pictorially by Figure 18. The relatives as participants are represented by the rainwater and their journey is shown by its path as it falls from the clouds to the hills and is captured by various buckets. The first theme, ‘Context’, is represented by the rain cloud, which holds the relatives and the complexity of their individual situations, illustrating the impact of their caring relationships on their emotions and on the practicalities of daily life.

FIGURE 18 Relationship between key themes in understanding relatives’ experiences with REACT. (Figure not reproduced here; see the original article.)

The flow of rainwater from the cloud represents the relatives’ journey to NHS EIP services, shown by the blue bucket. The brown bucket represents other forms of support that relatives may use, either in conjunction with EIP or separately, including support provided by charities and other sources of information.

The second theme, ‘introduction to REACT’, represented by the pipe, describes the way in which the participants are introduced to REACT by EIP staff, with the characteristics of this introduction determining the extent to which they initially engage with the intervention. The bends in the pipe represent the importance of an effective introduction in order to maintain the water flow through to the REACT ‘bucket’.

The third theme, ‘engagement with REACT’, refers to the participants remaining contained within REACT, with the factors that keep them interested grouped into subthemes. Theme 4, ‘disengagement from REACT’, is represented by rainwater escaping from the bucket and shows the aspects of REACT that participants felt could be improved in order to meet their needs.

The diagram shows links between the themes and subthemes as dotted lines. Although each participant’s journey may be linear (a relative of an EIP service user introduced to REACT, and then accessing REACT), the factors that affect their engagement with the intervention link back to their context. This reflects the fact that an in-depth understanding of the situation and experience of being a relative of someone experiencing psychosis or bipolar disorder is fundamental to designing the features of REACT and creating a protocol for the way in which it is introduced to relatives.

Theme 1: context

The first theme captures the essence of the environment into which REACT was introduced, which encompasses family, personal, work, social and practical factors. Understanding context is fundamental to making sense of how relatives engaged with the toolkit. The subthemes combine to illustrate situations experienced by the relatives, which are characterised by chaos, uncertainty, complex family structures and relationships, and difficult interactions with a range of physical and mental health services in the search for clarity and treatment. All of the participants provided rich detail about the experience and effects of caring for a family member.

Impact of the caring role

Participants described their lack of understanding of what was happening to their relative in terms of their illness, and the emotional impact of this uncertainty. One participant conveyed how all of her time and energy were directed towards her relative, which left little space for understanding what was happening to the whole family. This created a feeling of a state of emergency, with no opportunity to gain perspective and analyse the problem. Despite the lack of emotional space to understand the situation, there was a strong desire to make sense of it and understand its origins:

It was very, very difficult to understand what was going on and where it had come from, and you were just so confused . . . you don’t have any space to process it or to understand it.

The search for meaning and the cause of the difficulties was prevalent in participants’ accounts. In some cases, a sense of guilt emerged as participants questioned whether or not their actions had led to the difficulties being experienced by their relative, with one person questioning whether or not she had done something during pregnancy that had caused the mental health problems besetting her son.

Participants described their reaction to the onset of their relatives’ difficulties as a state of shock, accompanied by fear and uncertainty. This highlighted the trauma associated with the onset of psychosis or bipolar disorder. One participant described how she felt ‘lost’, evoking a sense of isolation and a lack of support and clarity about what was happening. In addition to physical demands of time and energy, the emotionally traumatising impact of shock suggested that the participant’s ability to seek support and process information at this time would be limited, despite this being a real need:

I think initially it was a tremendous shock and very frightening, and we were just lost.

The persistent trauma and shock were described as having a negative impact on carers’ own mental health and stress levels. This experience was not characterised by an isolated incident of stress, but continued over an extended period, resulting in high levels of distress. The intensity of the caring relationship was exacerbated by uncertainty about their relative’s behaviour. The need for constant vigilance made the caring role feel all-encompassing:

You just don’t know from you know hour to hour really how they’re going to behave.

Because it’s so crazy for 2 years, trying to get support for him, and I was thinking . . . I’m going to end up having a mental breakdown.

Under these circumstances, the relatives’ own needs became supressed. This highlighted the need for information and support that were easy to access and digest, and could be used flexibly to fit in with the unpredictable nature of the caring role.

Family dynamics

Participants discussed difficulties with balancing the needs of the rest of the family because of the demands of the family member experiencing mental health problems. The challenge of allocating time to roles such as wife or husband, friend, employee or parent to other siblings linked with the previous theme stretched resources. Attending to the needs of other children was difficult, as was maintaining a commitment to work. Three participants felt that they were unable to work because of their caring responsibilities. Others said that they were able to remain in work only because of the flexibility shown by employers. One participant described how valued leisure activities were no longer possible, and acknowledged with resignation that this was part of being a carer. This showed how the needs of carers were often relegated in the face of other demands, sometimes with the carers not even recognising this themselves. Understanding this contextual factor is important in planning for how REACT is introduced and presented, as discussions about identifying and validating the needs of the carer may be required:

Yes, you’re not just the carer really, it’s balancing everybody else’s need in, ‘cos that’s the reality of families isn’t it?

I’ve given up work to be there 24/7 for my daughter who basically has had a couple of episodes which initially we thought was brought on by drug-induced psychosis.

I ended up being off work with him until April . . . There are big chunks of my life where I’ve had to take time out from what I do to care for [my son].

Initial contact with health services

This subtheme covers contact between participants and clinical services, both physical and mental health, in the search for clarity at the onset of their relatives’ difficulties. Despite extensive attempts to find someone who could tell them what they should do to support their relative, participants were often very frustrated by the lack of support and information. They described time and effort spent travelling fruitlessly to different clinics. The sense of being excluded from services, and the effort and tenacity required on their part to even identify where help might be found, were palpable:

I’ve gone to one clinic after another and nobody can actually tell me how I get into the system.

Some participants contrasted the lack of clarity about what was happening to their relative with physical health, where definite diagnoses and treatment plans are made:

Initially I was very confused as to what was really wrong and I said this many times: if you’re dealing with measles or a broken leg then we’d all know what to do, but where mental health is concerned it’s anybody’s guess it seems.

All of this seemed to exacerbate carer distress. Participants spoke about feeling frustrated that their voice was not heard when interacting with services for their relative. In adult services, clinical staff were often reluctant to communicate with them owing to confidentiality. Participants felt that services discounted the value of their knowledge about their child and were excluded from discussions owing to the service user’s status as an adult. This further diminished the role of the participant as the carer. The contrast between how insignificant they felt their role to be considered by clinical staff and the reality of the amount of time and physical and emotional energy put into caring incited strong emotions of anger and sadness, but also reinforced feelings that their own needs as carers were not relevant. This was highlighted when one participant expressed her frustration at not being listened to by clinical staff:

I see him on a day-to-day basis; something’s not right, you know that, your mother instinct comes in.

I just think if the professionals actually sat down and interviewed us as well and maybe just not told us all of [son’s] confidential business but just listened to what I had to say.

Most frustration was focused on the initial process of trying to access support at the onset of their relatives’ difficulties, and carers primarily described interactions with NHS primary care services such as GPs, rather than the EIP service. Although there was variance in the length of time before appropriate services were accessed, positive experiences did not feature in participants’ descriptions of this initial period. Once participants were able to access EIP services, they described more positive experiences and provision of support.

Theme 2: introduction to REACT

The way in which relatives were introduced to REACT proved to be a key factor in determining their level of engagement. There were three important elements: who they were introduced by, when they were introduced and how they were introduced.

Who?

The personal characteristics and relationship between the participant and EIP staff member as REACT introducer influenced the decision about whether or not to access REACT. A positive relationship with the introducer was characterised by trust and familiarity with the circumstances and needs of the carer, and made relatives more likely to sign up to REACT. The sense that the introducer has the participant’s best interests at heart was fundamental. Participants appreciated the care shown by the introducers and, in particular, that REACT focused on them as carers:

He said it was like . . . a toolkit, you know, you might find it useful, you know just have a look and see what you think, you know it’s being developed, so that’s what I did, I had a look ‘cos I liked him.

I would go with anything that [care co-ordinator] had said and the person that worked with him previously, you know, they were very good and they just wanted to help.

Strong individual relationships emerged when participants felt that they were being listened to, taken seriously and not dismissed:

. . . But it was the Thursday of that week that the people from the EIP team first came, and I have to say they were absolutely brilliant. They spoke to me first, they were very concerned about how I was coping.

Early intervention team, amazing, really, really good in [town] – the one thing is that no one pooh-poohs you, they take it seriously.

Participants saw REACT as something that worked in conjunction with EIP, rather than being a replacement, with a strong existing relationship with EIP being important for this dynamic, and REACT was viewed as part of a package of care:

The toolkit . . . doesn’t replace the actual contact with the professionals, you know, that [contact] was invaluable, and still is actually. But it is useful in addition.

Participants were asked how they would feel about being introduced to REACT by another relative rather than a member of EIP staff, and most saw additional benefits to this. Other carers were viewed as offering potentially greater levels of understanding than clinical staff, which has implications in terms of involving carers to introduce REACT in future:

I think if you’re actually experiencing the problem yourself you really have a better . . . You really understand what’s useful and what’s not useful.

When?

Participants wanted REACT to be available to relatives as soon as possible, to address the need for clarity and support during the early phase of their relative’s difficulties. Several participants expressed frustration that REACT had been offered to them too late to be of use. The onset, with its shock and confusion, was the time when information about what was happening would have been much appreciated and could have reduced the trauma of the situation. Participants wanted to better understand what their relative was experiencing in order to provide more meaningful support to them, and felt that REACT could have had a role in providing this if it had been provided at the right time:

I do think the website itself is brilliant but it was probably just too late for us.

You’re sort of there stumbling around in the dark really, so at that point initially if you’re given information or signposted to things, I think then you can start to then understand, OK, what they’re going through.

However, some participants acknowledged that too much information early on might have been experienced as overwhelming. Despite this, they still wanted REACT to be available to them early, so that it was there when they felt ready to access it – they could make the decision about when the right time was:

I suppose for me it would have been valuable to give that information when I got a carers’ pack . . . Even if you don’t use it, basically you’ve got it, you know you can look at it.

How?

Participants needed to hear the benefits of REACT as part of the introduction. They wanted explicit detail of what was covered and specifically how this could be of value to them. Key to this was a clear message that REACT prioritised the needs of the relative. The opportunity to hear stories from other relatives about their experiences was a significant draw, especially when this was explicitly linked to reducing the sense of isolation that can accompany being a carer.

Although the initial introduction was seen as the most significant interaction in engaging relatives with REACT, gentle reminders from staff were also crucial to ongoing use. The discussions, explanations and ongoing reminders highlighted the importance of REACT being offered as part of an integrated service that included face-to-face contact:

. . . that it was just so important for me to look after myself because I was his primary carer, you know, that role was explained to me as well, and . . . I think it was after the second visit that [care co-ordinator] sent me the contact details or the user details for me to log on to the REACT website.

The question of whether or not REACT was introduced in the context of the IMPART research study is significant here, with opinion divided between participants regarding whether or not this motivated them to access REACT.

Some participants felt that engaging in a research project was positive, because it contributed to advancing knowledge that would benefit people in similar circumstances. Others felt that it would put them off using the toolkit as it represented one more demand to add to an already-heavy load:

I was just so grateful for the help that I did get and you know that I did genuinely want to, you know, contribute here in any way that I could . . . for other people.

I might have been irritated if somebody said, ‘oh yeah, it’s a research at that point’ ‘cos I was so stressed out . . . ‘Oh, do you think I really want to be worried about research when I’ve got somebody trying to kill themselves?’

Theme 3: positive engagement with REACT

If initial engagement with REACT was largely determined by the way it was introduced, ongoing use was more strongly linked to the actual content of REACT. Participants described the features that appealed to them and kept them engaged.

Video clips

Participants were positive about REACT’s use of video clips, which illustrated situations faced by other relatives and how they dealt with them. Watching the clips reduced their feelings of isolation, as they identified with people in similar situations.

They also found the clips useful in suggesting strategies for dealing with difficult periods, and new, helpful ways of communicating with their relative, for example when experiencing scenarios such as hearing voices. (This subtheme links with context and family dynamics.) This enabled participants to change their perspective and improve their understanding of what their relative was going through, which then enabled them to consider different ways of thinking about the situation and change their behaviour:

I found the information on there absolutely brilliant, absolutely brilliant, because some of the people were even talking about the same experiences that I was having.

One of the video clips explained it beautifully: she said, ‘even though it may not seem real to us, it actually is a real thing for them, so as convincing as I’m saying to him no that didn’t happen . . . well, you shouldn’t say that to a person because it actually did happen, in their brain it happened’. So yeah . . . there was lots of good videos.

REACT usage data for the above participant (Seashore 09) supports her description: she visited the module containing the video clip she referred to three times during her total of eight logins to REACT, suggesting that this was the most engaging module for her.

Empowerment

Having more information about their relatives’ conditions increased relatives’ confidence and made them feel more empowered. When interacting with clinical services, the information they gathered from REACT meant that they felt more equipped to have meaningful conversations and were not so readily dismissed. One participant talked about how REACT reduced her feelings of panic about her relative’s difficulties, and led to a calmer feeling of acceptance:

I felt empowered honestly after having that little session online by myself.

We’re not being fobbed off with ‘everything’s going on OK’ [when] really it’s not.

Once you start listening to other people’s stories or the literature, like I said, it makes you calmer about the situation, that’s what I’m trying to say . . . My attitude now, well not all the time but sometimes, is right we’ll ride the waves and see what happens whereas before I’d be like trying to stop the waves.

Ease of navigation

Participants found REACT easy to navigate and understand. The modular structure allowed some participants to identify which section of REACT was most relevant to them, and others to work through REACT methodically and sequentially, as preferred. This echoes the earlier theme in which relatives also wanted choice about when they could access REACT:

Well I thought it was bright, and like I say the big boxes to click on to send you further into what you wanting, really easy, and it’s easy to navigate from one to the other, you know you can bounce around it, you don’t have to go step by step anywhere, so you can take bits whenever you want it, so yeah I found it quite user friendly and easy on the eye.

This participant’s REACT usage data shows that she accessed 10 of REACT’s 12 modules over five separate logins, which supports her description of ease of navigation.

Theme 4: disengagement from REACT

Factors that discouraged participants from using or returning to REACT included technical problems with accessing REACT, a lack of activity on the forum and the omission of important areas of content.

Technical problems

Some participants expressed frustration with problems they had with accessing REACT and with the initial account set-up process. Persistence and additional support from EIP staff were needed in some cases. For some, this meant that REACT was perceived as another task, another problem to overcome, rather than something helpful and supportive. Some participants felt as if they had done something wrong, and REACT added to their feelings of stress and burden rather than helping. One participant referred to REACT as ‘not liking’ them, which evoked an antagonistic relationship and a direct contrast with REACT’s aim of providing support. This emphasised the importance of resolving technical issues quickly, which was not always possible owing to limited resources.

Access issues also occurred because the REACT online trial ran in parallel to the IMPART study. Some IMPART participants used an internet search rather than through the link provided by their trust and accidently reached the REACT online trial website rather than the toolkit hosted by their trust. This problem would not occur in any future implementation of REACT:

I think my husband and I tried and initially there was problems getting onto the website, we were having issues.

So I do need to be able to get on it easily ‘cos that’s like another oh god not something else I’ve got to do.

Inactive forum

The forum was designed to allow relatives to connect with each other to share experiences, ask questions and exchange information. However, because each trust hosted a separate forum and the number of relatives using REACT in each trust was small, there was very little activity on the forums. This discouraged participants from posting, as they felt that this would make them conspicuous. This also gave the impression that it was not functioning as it should, thereby reducing confidence in the rest of the intervention. Participants wanted a well-populated and fully functioning forum to communicate with other relatives, reduce their sense of isolation and motivate them to revisit REACT to look at new content. Some participants checked the forum several times, and then followed this up by contacting EIP staff about whether or not the forum was active. Their persistence demonstrated the level of interest and need for this feature. REACT usage data support this point, as the forum was the most visited area of REACT, despite the lack of activity. One participant logged into the website eight times to check if anything was posted:

Only thing I was slightly disappointed in was the forum. I mean I don’t know how new the website is but there was just nothing on it, you know, I was hoping to be able to just go in there and read, you know . . . how other people had dealt with them.

Well, it didn’t seem to work. I did go on it a few times and initially didn’t get any response and then I mentioned it again to [care co-ordinator], I’m not sure how up and running it is or actually was.

Lack of specific information

Participants wanted more information about some topics that were not included in REACT to help in their supporting role. Specific medications and their side effects, comorbid health conditions and recovery were specifically highlighted; for example, participants were concerned about weight gain associated with some medications and wanted more information about this particular side effect, how to address it with their relative and, if necessary, introduce conversations about healthy diet and exercise:

Explain the medication, explain the risk of the medication, you know because . . . there is a lot of side effects, addiction to it. My brother put on about 4 stone in weight within a short period of time because of the medication – nobody told me about that, but how can a family member protect somebody . . . if they don’t know that information?

There’s not enough information about clozapine, aripiprazole, the mixtures thereof, getting those right, the side effects of that.

Some participants said that REACT did not feel relevant to them as it did not provide case studies in which the service user had more than one condition. They had to adapt the information too much for their own situation. Autism, in particular, was a relatively common comorbid issue. Participants need to feel that REACT could be applied to the specifics of their situation and family, that it could be tailored to their needs and that it could account for the differences in families’ situations:

But what we didn’t know at the time, and didn’t know until March of 2017, that [daughter] is autistic as well.

Most participants were parents, and some felt that REACT lacked sufficient information about supporting their children to achieve an independent and fulfilling life. They were concerned about what would happen to their son or daughter if they were no longer able to support them, and this led to a desire to help their child to become more independent.

This emphasises the idea that participants feel that the information provided in REACT can be tailored to their individual situation and provide practical strategies for navigating problems. Participants expressed the need to help their relative complete day-to-day tasks independently and support them to build their own skills:

The recovery section was not particularly uplifting . . . and I know it’s a very slow process, even recovery, and just understanding more that how recovery is going to happen. How things move forwards. It just seemed quite a small section.

Independence to me means well managing the things you have to do everyday to be able to live independently.

Well I need them to be OK, I need them to get on with their lives.

Discussion

Relatives described many challenges in their caring role, and valued being offered REACT as a source of information and support. However, they saw REACT as being one tool in a much broader health-care system that they were keen to be more involved with.

Logging on to REACT and taking the time to explore it required time and effort and was often done in response to a recommendation from a key staff member they trusted and whom they felt had their best interests at heart. This staff member was also often called on to help navigate REACT and to overcome technical issues.

Relatives were very keen to learn new information and strategies and listen to other carers who could help them to make sense of and respond to the challenges they faced. Although the modules, particularly the video clips, went some way to meeting this need, there was a lot of disappointment in the lack of activity on the forums. Relatives had excellent ideas about how the content of REACT could be improved and when and how REACT should be offered, and clearly need to be involved in ongoing design and delivery of REACT.

The broader context (see Theme 1: context) and engagement with the specific aspects of REACT (see Theme 3: positive engagement with REACT and Theme 4: disengagement from REACT) are unlikely to be influenced by the iterative versions of the implementation plan described in Chapter 6. However, the process of introducing REACT to relatives (see Theme 2: introduction to REACT) is likely to be influenced by some of the developments made. For example, in wave 2 (IPv2), REACT NHS booklets were provided to staff to use with relatives, and these explicitly highlighted the benefits of REACT for relatives. This may have reminded staff to articulate these benefits when they introduced REACT, which was a key facilitator of relatives engaging with REACT.

Implementation plan version 2 also introduced a planning document to help services to work out how best to integrate REACT into their existing care pathways, which was further developed in wave 3 (IPv3) to structure a strategy meeting to promote ownership with the organisation. Where successful, this would have ensured that REACT was reliably offered early in the relatives’ EIP journey and as part of a coherent package of care, both of which participants described as key facilitators.

The data presented here do not allow us to directly test the impact of each implementation plan, but do support the content as being relevant to enhancing relatives’ engagement as well as staff engagement. However, these data also highlight the importance of nurturing individual relationships between relatives and specific staff members over time, which was not specifically addressed in any of our implementation plans.

Context was clearly very important in determining how relatives engaged with REACT. Consequently, context emerged as a strong theme in the analysis. However, in separating this out, we may have lost the link between key features of the context and how this was affecting relatives’ experiences of being introduced to REACT, factors that enhanced engagement and those that led to disengagement.