Qualitative Digital Diary Methods: Participant-Led Values for Ethical and Insightful Mental Health Research

Study Outline

This paper uses data from two qualitative digital diary studies - the Eating Disorder Recovery Diary Study, and the REACH Diary Study, and hence two different groups of participants: young people in London schools (the REACH diary study) and adults recovering from an eating disorder (the Eating Disorder Recovery Diary Study). These two participant groups allowed exploration of experiences of qualitative digital diary research across different contexts and populations, supporting the findings to reflect key aspects of experiences across the different groups. Participants in each study kept a qualitative digital diary, and then took part in follow-up stages to discuss their experiences of taking part in the QDM research. A total of 49 participants across both studies took part in these follow-up stages. The findings from the diary phases of these studies are reported elsewhere (McCombie et al., 2023b). The current paper focuses on the second stage of the research - exploring participants’ experiences of taking part.

Participants

Eating Disorder Recovery Diary Study

Participants were recruited online, and needed to self-identify as recovered from a formally diagnosed eating disorder and be currently free from clinically severe levels of eating disorder symptoms (assessed using the Eating Disorder Examination Questionnaire; Fairburn & Beglin, 2008). Fourteen participants kept diaries, and all were interested in taking part in focus groups following the diary period. Due to scheduling difficulties, nine participants ultimately took part in online focus groups. Participants were not offered compensation to take part. Participant characteristics are described in Table 1 below.

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Table 1.

Participant Characteristics, Eating Disorder Recovery Diary Study.

Age (years)	20-29 – 6
	30-39 – 1
	40-49 – 2
Gender	M – 2
	F – 6
	Prefer not to say – 1
Ethnicity	White British – 5
	Asian/Asian British – 3
	Mixed/multiple ethnic groups – 1
Highest education level	Bachelor’s degree – 7
	Masters or other post-graduate degree – 2

REACH Diary Study

Participants for the Diary Study were recruited through purposive sampling of REACH participants to ensure a balance of genders, ethnic groups, household income (based on free school meals status), and those scoring high (>18) on the Strengths and Difficulties Questionnaire, a widely used self-report measure of emotional and behavioural difficulties (Goodman, 2001). A study invitation was sent out to 160 REACH participants. Of these 62 responded and 48 were selected to take part. All were offered the option to take part in a interview following the diary keeping period, and forty participants took part in this interview. Participants were offered shopping vouchers of value based on the number of diary entries completed, and additional compensation for taking part in the interview. Participant characteristics can be found in Table 2 below.

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Table 2.

Participant Characteristics, REACH Diary Study.

Gender	Girl – 24
	Boy - 16
Ethnicity	Black African - 17
	Mixed - 7
	White British - 4
	India, Pakistan, Bangladesh - 3
	Black Caribbean – 2
	Latino - 2
	Arab - 2
	Other White - 1
	Chinese - 1
	Other Asian - 1
School year	Y10 – 1
	Y11 – 14
	Y12 – 16
	Y13 – 9
Free school meals	Yes – 20
	No – 20
At risk of mental health difficulties	Yes – 15
	No - 25

Note. School year typical ages: Y10, age 14-15; Y11, 15-16; Y12, 16-17; Y13, 17-18. Free school meals status is a proxy for socioeconomic status; at risk of mental health difficulties is indicated by a ‘high’ score on the Strengths and Difficulties Questionnaire.

Data Collection

Analysis

Data from both studies were analysed together, using reflexive thematic analysis (Braun & Clarke, 2022). Initially, a process of familiarisation with the data took place through transcribing audio recordings and reading the dataset as a whole. A first coding round was then used to identify the different concepts and information contained in the data, with a view to broadly organising the data. A second coding round then went through the data more closely, with a particular focus on identifying nuances and gaining an in-depth understanding of each topic contained in the data. Through this second coding round, themes began to be formed based on concepts that repeatedly came up across the data, and concepts that invoked debate and differences of opinion between focus group participants. Themes were then formed by grouping coding categories together according to an over-arching concept or principle captured by a group, and then checking back through the raw coded data to see if the data made cohesive sense under the theme. The final themes represent core values for qualitative diary digital research, each value covering an aspect of qualitative diary research that participants identified as important for them.

Researchers kept reflexive diaries throughout the research process, to support paying consistent attention to acknowledging and reducing the impact of their own experiences and assumptions on the study findings. Reflexive discussions took place following focus groups, and at all stages of the study planning and analysis, to support researcher reflexivity in discussing alternate perspectives.

For this study, we took a relativist ontological position with a social constructionist perspective [REF THIS]. We took this approach as we wanted to look at the experience of taking part in a qualitative diary study from a personal point of view, while also considering the social constructs at play when relaying personal experiences to a researcher audience. Mindful of the fact that data in a qualitative diary study depends on how participants express themselves, and feel able to express themselves, we were therefore primarily interested in how participants talked about their experiences, and in how they talked about expressing their experiences through their diary entries, and therefore felt a social constructionist perspective was best suited to this.

Self-Expression

This theme highlights the importance of supporting participants’ individual preferences for self-expression in their diaries. Participants valued the individuality of diary-keeping and felt that being able to engage in this in ways that best suited them in the moment was a key positive of digital diary methods. Participants in both studies had different formats available to use - including written, audio, and video recording - and found different benefits to each method, with choice of method generally reflecting what participants wanted to get out of each diary entry.

Written diary entries suited participants when they needed to think through what was on their mind in order to articulate it: “I’d have to sort of think in my head like ‘what did I experience throughout like these two days?’ and then I’d like write it down slowly. But maybe that’s a blessing in disguise, because if I did voice recordings then it would be from here, to there [all over the place].” (RY2) For others, writing was easier than trying to verbalise thoughts: “typing is just the easiest because I find it hard to put everything into words when I’m speaking. It’s easier to just type it out.” (RH22). Writing also helped with privacy concerns, as diaries could be written anywhere privately without fear of being overheard, or of waking sleeping family members.

However, there were times when writing felt challenging, sometimes due to the physical act of typing on a phone, “it can be hard to type out as much, you have to keep it a bit shorter.” (RY6). Communicating difficult experiences in writing was harder for some participants: “if something particularly difficult happened, or it’s been a bit of an up and down day, I find that a bit easier to give an explanation in kind of, in a voice recording rather, it’s sometimes harder to get across in writing, I think.” (RY3).

Audio recording provided a different avenue for reflection and expression compared to writing. “I found that it was, I really liked the voice to text option. So for me, it was easier to have more stream of consciousness, just to be able to say it, and also put it as I was thinking it through, rather than thinking and pausing and deciding how to write it down.” (RY9)

Audio recording diary entries was generally preferred when participants wanted to use the diary as an outlet: “I guess I really like it [audio recording] more when I just kind of like talk and like whatever comes out of my mouth comes out of my mouth, that’s how I’m feeling. Whereas if it was writing, I have to consider it a bit more” (RH29).

Video recording was an additional option for REACH participants. Many participants did not use this, referencing that being on camera was “not my thing” (RH18), so they used alternative methods - “I would always choose the voice one because I was very shy if I want to do a video” (RH12). However, some participants did choose videos, citing ease of recording a lot of information in one go. One participant talks about using it as like their own personal Youtube channel, allowing them to reflect on their day to an imaginary audience of peers, which may have supported them to reflect and report on what they felt is most relevant to record: “Some of my videos I’ve been acting like as if I have a personal YouTube channel. I don’t know why. But yeah.” (RH5)

This theme highlights that having different options available made participants feel that they could contribute to the study even when they did not feel like talking/writing/recording, and that participants critically reflected on the benefits and challenges of different methods while they were taking part in the study. Participants reported that people may not know ahead of time what is going to be the most effective way to communicate their experience, so the different options ensured that there would be some way that worked for them.

Flexibility

This theme highlights the importance of flexibility in supporting participant engagement. Participants reported that different schedules and options for diary entries make it easier to participate, as well as making the data provided more rich and valuable. Several participants reflected on the importance of capturing their in-the-moment experiences, rather than reporting on experiences at the end of the day:

“Being able to record at multiple times through the day, as something happened, or what you found difficult at that time to catch it at that time, I think would be a good option…. especially in eating disorders thoughts, because later in the day you probably would have calmed down and it’s almost like you try to think of the emotions, just being able to literally just capture it on your phone as it’s happened, I feel would be a lot better.” (RY3)

This quote illustrates how different types of recordings or diary entries capture different perceptions of experiences, and that the flexibility to do both in-the-moment and end-of-day reflections can be valuable. Similarly, some participants reported that squeezing in a diary entry at the end of the day meant that they had less time for reflection than they might have if they did earlier in the day during a free moment.

Participants valued the flexibility that the mobile app platforms gave them to take part, appreciating the multiple format options for entries, as mentioned in the previous theme, as well as the fact that it was on their phones which made it fit easily into their lives:

“Most of the time we’re on our phones, you know, sending voice notes or typing paragraphs to our friends… So it just felt like that, like, it felt like another form of social media, like, literally just, you know, just talk to you.” (RH10)

Similarly, reminder notifications from the apps were appreciated, supporting involvement and reducing burden of guilt when entries were forgotten, and allowing the diaries to fit into participants’ busy lives: “I found that really good because sometimes I would just get caught up in revising and forget to do it, so it was very helpful to be able to have a reminder.” (RH2)

Flexibility within the diary content was also mentioned: “I think if there wasn’t a time thing [limit], then I would see it as more, like, flexible. Because I think the 5 minutes made me think, ‘Oh, it has to be 5 minutes long, so I need to set aside 5 minutes to do it.’ And then I’ll be, like, conscious, like, ‘Oh, I didn’t go into detail’” (RH17), highlighting the need for flexible entries to reduce potential anxiety or stress around planning entries. Some participants referenced keeping their own personal diaries as well, meaning that the diary entry they recorded for the study was less personal as they did not want to repeat things. Therefore, awareness of how the diaries for research fit into the context of the participants’ lives is important in fully understanding diary entries.

Participants suggested that getting into a routine of taking part would help keeping the diaries fit more easily into their lives. “I think that a little bit of a long time would definitely have been helpful… getting into the habit of it, because they say it takes like 21 times of doing something before it becomes a habit. So a little bit longer would definitely have been helpful to cement into my routine.” (RY4). Different participants had different suggestions as to what would be a good habit-forming routine for them; some preferred daily entries for a shorter period of time, and some less frequent entries for longer. This emphasises the individuality of this and the importance of consulting with each participant and being flexible in approach to diary schedules.

However, taking ownership over involvement in the study was also felt to be important: “I feel like because I volunteered to this study, so I sometimes feel I may forget to do some homework. If I am volunteering to do such things I think I also have some responsibility for that.” (RY5)

Overall, flexibility was considered an essential part of a diary study that supported participants to take ownership of their involvement, and meant they could take part in ways that best suited them and made sense to them in the context of their experiences. Participants understood the value of flexibility for supporting individual involvement and control over data, and the value of this for the research as a whole.

Non-Judgement

The central concept of this theme is that participants need to feel the audience to their diary entries is non-judgemental and understanding, and that this is an essential part of their willingness to engage openly with a qualitative diary study. Key to this with the Recovery Diary Study participants was involvement of lived experience researchers:

“I would want someone that has, I don’t know, been touched or knows about eating disorder recovery and everything that goes along with it. I think I would feel more comfortable because I think I’d feel less kind of alien-like towards them? That they’re not kind of looking at me like… like they’re thinking ‘what the heck is she on about?’ (RY7)

This comment suggests that involvement of lived experience researchers would help break down researcher and participant power differences, with the researcher observing from the inside rather than looking in from the outside, helping people feel less judged and more able to freely communicate. A shared position of understanding and empathy would also facilitate communication and understanding:

“If it’s somebody with lived experience you might feel less judged in a way, because they’ve gone through, not the same thing, but something of their own. And they kind of may relate to it. Somebody without lived experience may not understand what you’ve written… They might be like, that makes no sense to me. Whereas somebody with would go, ‘ok, yeah, I know what that is’.” (RY8).

Shared language and experiences would mean participants felt less pressure to explain their thoughts, and thus record diary entries more freely: “You might not feel like you have to kind of explain so much, why something was so difficult perhaps, because you know, the person reading it would already kind of have an idea why you might be finding it difficult.” (RY6). Similarly, participants considered a lived experience researcher to have benefits for analysis: “It’s really hard for people that haven’t gone through something similar in general, in like mental health, to understand any like… minute nuances that some people might write.” (RY4).

Overall, having lived experience researcher involvement would support participants to feel more comfortable, less removed from the researchers, and better understood: “there’s that already initial position of empathy that they can really like see what you’re going through.” (RY4). And: “If he or she doesn’t know anything about it [from lived experience] the analysis seems very neutral, but without some essential component.” (RY5).

However, some participants reported concerns with lived experience researchers being more likely to pick up on things related to their own experience, introducing bias into the findings, and reflected that having both types of researcher involved in analysis would be their preference. Participants also reflected that non-lived experience researchers would also have their own set of biases.

“Perhaps they can go internally into their own relatability about lived experience, but it might skew the data in either direction that you might not get from somebody who’s looking at it from more of a distant perspective. But, I think that’s the beauty of having research that has both [lived experience and non-lived experience researchers], right? That you get the pros of both of those.” (RY9). There is a sense here that there is more a fear of misinterpretation because of other people’s experiences biasing them. This relates to the importance of understanding individual experiences and how each person’s experience is unique.

Another key part of non-judgement raised by REACH participants was their long term involvement with the research team as part of the wider cohort study. For the REACH study, researchers maintained contact with participants and their schools for several years prior to the diary study, including six waves of data collection and an extensive engagement programme (Richards & Robotham, 2022), allowing trusting relationships to be established with the research team that meant participants felt safe to speak freely within their diary entries: “it did feel quite nice because it was like place where I was kind of able to talk about like what went wrong that week and let out all my feelings with you. (RH33).

Additionally, feeling a reduction of individual scrutiny was one potential positive of studies with larger numbers of participants: “I think the whole like judgemental part comes into it. Like that you’re under the microscope all of a sudden, whereas if there’s a lot of us together…” (RY7).

Open Communication

This theme covers the importance of communication between researchers and participants being as open as possible. This builds on the other themes as open communication can only be possible when people are able to express themselves how and when they need to, and to an understanding audience.

Diaries offered a place where participants could be authentically themselves, and as an outlet for their thoughts and feelings. For some, this was an opportunity they did not have outside of the diaries.

“Being involved in the diary entries has really helped me just know how I feel, because sometimes I don’t really talk about my feelings so it’s nice to be able to like talk and just let everything out.” (RH2).

Participants reflected on wanting to be open and honest about their experiences, with an awareness that this would help the research. “I felt that because I knew this was not going to be read by somebody that I was having a reciprocal relationship with, in a sense that it wasn’t a therapist, it wasn’t a dietician, that we were following up with. I felt like I was able to just give my honest opinion, because I knew it was for research. And so I knew in my mind, oh well an authentic answer, whatever it is, is better” (RY9).

Alongside wanting to be as open as possible, participants also reported awareness that they were writing for research rather than themselves, and the audience they had in mind while recording entries directly affected how they communicated, as highlighted in the previous theme, ‘Non-judgement’. Some adjusted their writing to ensure they would be understood by others.

“There was a lot of translation work, because when I’m writing a diary entry for myself… it’s not like sentences that would make sense to anyone. So yeah, it was kind of like making it make sense, but other than that, um… it wasn’t really mellowed as such.” (RY8).

For some participants there was a sense of directly writing to someone: “It like helps you guys give an understanding about what we are like feeling, and like it helps me like express how I’m feeling about what I’m going through right now.” (RH1) This sense that someone was listening was also comforting: “It felt nice to just let everything out, just typing everything, my emotions out, everything. Just because I personally like, it makes me feel nice, even if I talk to a complete stranger about a horrible day that I had, just having someone that I can tell or knowing that someone is just listening to me or like reading about it is nice, honestly, it’s really nice.” (RH46)

Others used it more as an outlet, treating the diary as a space for personal reflection:

“I kind of felt like I was going to a therapist and kind of like talking about me all the time. I really liked it, I thought it was nice, I guess like getting those thoughts out into words”. (RH29)

Participants in the REACH study more often referenced thinking of the researcher directly as their audience than those in the Recovery Diary Study: “It like helps you guys give an understanding about what we are like feeling, and like it helps me like express how I’m feeling about what I’m going through right now. And like you guys are very like, since Year 7 like you guys have been very helpful to everyone, in my opinion, in my school.”(RH1). This may be due to the REACH participants having participated in baseline interviews with the researchers, and being involved in the wider REACH project for several years.

The prompts and questions that participants responded to in their diaries could either help or hinder open communication. Some prompts framed experiences and made participants feel they could not report on other things they felt were valuable, or the very question shaped how they thought about what to write in a constraining way (e.g., the “thoughts or feelings” rather than “experiences” which is more open). “If I had to answer [specific] questions, I might have gotten too analytical about it, but this let me tap into a bit more of a holistic like approach to it I think.” (RY9).

However, some felt that diary prompts restricted open communication: “I remember being slightly frustrated from them [the prompts], a little bit. For me I would have rather wrote just kind of freely, in just like a reflective journal for the day. But that’s my, probably my own personal style of writing, sort of thing.” (RY3). Others reflected on questions not seeming quite right for the circumstances at times: “the questions were kind of similar which was a bit hard, because if I was doing it I don’t know when not much had happened it was quite weird” (RH8). This emphasises again the importance of supporting individual differences and ways of expression, and of flexibility with prompts around different circumstances and timeframes.

Concerns around openness of communication were raised around risk and safeguarding discussions, where participants were aware that words recorded in moments of heightened emotions in a diary entry might lead to more worrying than necessary.

“If I had been having a really bad day, if I knew the information would perhaps be used or be alerted to somebody else, I think I might be more hesitant about what to write down and how much depth to go into. So kind of actually asking the person who wrote the entry, are you ok, we just want to know whether you are still feeling this bad, or whether you would like us to kind of get further help for you?” (RY6). This was particularly important with in-the-moment entries being available, as theres is a difference between venting in the moment and actually having lasting bad thoughts at the end of the day.

Helpful Reflection

The key concept of this theme is that participants valued taking part in diary study as it provided a place for helpful reflection.

“It was quite nice, to be honest, because it was the end of the day and I was in bed and I could finally just put all the feelings and everything, like what happened during the day, into a diary. I just thought of it as my notebook for expressing myself and expressing how I felt. It was good. It was like a reflecting type of thing.” (RH22).

Diaries enabled participants to think through what was going on in their lives, raising awareness of how they were feeling, and awareness of day-to-day changes and coping strategies: “it brought up things that I kind of wouldn’t have thought about like otherwise. Um… which was actually quite helpful, just to notice like how things differ day to day, and kind of what general strategies I use, even if they’re subconscious.” (RY8). This had a positive impact on participants: “I think the diary itself was pretty good for my mental health because I don’t talk – I wouldn’t talk about stuff kind of like if I’m upset or something’s going on… so I think kind of having the diary itself kind of helped just with your kind of mental health. (RH39) This may have been especially important for the participants in the REACH study, as they were keeping diaries during the time of Covid-19 related lockdowns and social restrictions.

Diaries supported participants to structure their thinking and recognise emotions: “I think it just made me like think and realise, “Oh whoa, this is how I felt”. So… this is how, yeah, this is how I felt. Like sometimes we’re not recognising some of the emotions that I feel. Like it helped me like… it’s kind of relaxing doing the diary entry and writing down everything that I felt.” (RH41). “It kind of helps you identify your own triggers as well.” (RY8).

Participants also considered the potential negatives of the type of reflection required by taking part in a qualitative diary study. Raising awareness of difficulties could be tricky as it emphasised to them that things needed to be worked on: “I think that it highlighted, unknowingly some things that are still difficult in recovery. And it gave me a chance to practice some more of those things that I still want to keep working at… I think wasn’t necessarily a down side, but it was am unexpected difficulty of doing the app itself. The process of it, not necessarily the outcome of it.” (RY9). Some participants said it didn’t raise their awareness overall, as they only thought specifically about recovery when they actually did their diary entry.

Other participants acknowledged that it was sometimes difficult to actually write down the things going on in their heads: “A lot of the time what I just want to put down is I ate a sandwich, it was good. Um, without the complexity of yes I ate a sandwich, after all the complexity of these like mental gymnastics to decide, because that is having to dig in for that information in my head, it’s a lot” (RY2).

Overall, there are ways to support positive and helpful reflection through taking part in a qualitative diary study, and researchers must be aware of potential negatives of reflecting on difficulties and have plans for how to support participants with this.

Meaningful Impact

This theme highlights the ways participants want to have control over their data and what happens with it. Participants were motivated to help others by taking part in research and emphasised the importance of diaries in helping improve understanding of their individual experiences. They highlighted the importance of understanding individual experiences, and factors in their lives that impact on these, and that this increased understanding could lead to more tailored mental health support. All participants highlighted the value of collecting diary data: “Especially if we’re trying to inform like individualised recovery, rather than recovery with a set idea of what it should look like for everyone.” (RY2)

Capturing and understanding the individuality of experiences was of major importance to participants, which can be understood in the context of one participant’s concern around diary entries potentially being reduced to generic points or stereotypes: “[I would think] what was the whole point of my pouring my heart out, [if]I thought I was doing something that would help people and as it turns out, no, just getting general things.” (RY1)

Within the REACH study, participants frequently referenced how they felt the importance of relating their experiences, helping the cause of mental health research in general, and helping others understand what people their age were going through.

“I liked to just, you know, just documenting what’s happened, what I’d been feeling. And, yeah, if it goes towards a good cause helping with mental health, then that’s a good thing. So I was always happy doing it.” (RH32). Another participant was one of several who mentioned the dual benefits to themselves and the research of keeping their audio diary: “Saying stuff out loud is great, and just being able to help, because I know this kind of stuff can help” (RH4).

Alongside the lived experience involvement in research highlighted above, which participants felt would benefit the analysis and study findings, one participant highlighted the value of participant involvement in the diary analysis: “I think also, keeping a diary but then having the participant’s own mini kind of analysis of their own diary, to pick out what they feel is important to them. Because then it might highlight and correspond with other diary entries for themes, that might not necessarily be what’s necessarily important to me.” (RY3).

Within the recovery diary study focus groups, we discussed the possibility of diaries being used in large dataset analyses such as big data studies. Participants talked about how this different use of diaries would affect how they completed their diary entries - such as ‘rambling more’ (RY4) and worrying less about specifically writing for someone else to understand. However, another participant reported the opposite, saying they might write less if no one was going to bother reading it: “It’s almost like what’s the point in writing a diary entry, which is meant to be personal, which is meant to be looked at more personally, just for it to be churned through a computer, to be turned into stats.” (RY3). This shows important things about potential differences in characteristics of participants who might be interested to take part in either type of study. Concerns around privacy and data sharing were also discussed by participants, who reflected that this might be more of an issue with a large database of diaries than with smaller scale research.

This theme highlights the fact that participants have a strong focus on the role that understanding their individual experiences will take in the research, and the benefits this could have for supporting those with mental health difficulties in the future.