Being Me with IBD: What do parents think and feel?

In this blog we talk about how the Being Me with IBD study has opened and facilitated informal discussion with the parents of young people living with IBD and the importance of listening to their stories and experiences.

The Being Me with IBD study focused on exploring the experiences and perspectives of young people with the condition. So often in IBD research, the focus is on the perspectives of adults and parents, but with our study, we wanted to keep young people at the heart of everything we did. But obviously, in conducting the study, we met with, and talked to, lots of mothers and fathers.

Discussions with parents

Within the children’s hospital, most of the young people we approached about their participation in the study were accompanied by at least one of their parents/carers. Although we made it clear that the decision about participating was ultimately the young person’s, there was often an active and, sometimes, lively dialogue between the researcher, the young person, and their parent. That conversation occurred both before we gained consent or assent from the young person and after data collection was completed. Some of the conversations we’ve had with parents whose son or daughter declined to participate have been engaging and interesting.

Listening to parents’ stories

What has been clear is that many of the parents are enthusiastic and supportive of the focus of the study. Had we offered parents the opportunity of being interviewed, we would have had lots of volunteers and some very interesting data to explore. The impression we gained from the informal conversations with parents is that they are concerned about the impact IBD can have on their children’s friendships and connections and well-being. One mother explained that she thought Crohn’s was “thoroughly awful” as it had come out of the blue and devastated her daughter’s life and disrupted her schooling. Her daughter disagreed and said she was “fine” but her mother reminded that “at the time it had been bad” and her daughter then nodded and agreed that being in hospital had made her less confident.

Our focus has been on the young people, and rightly so: they are the ones dealing with the daily challenges of the condition. However, it has become obvious that IBD affects parents as well as their children. They have shared a multitude of stories about their experiences of their child’s journey with IBD ranging from the worries before diagnosis to the ongoing concerns following diagnosis, their concerns as they saw their child withdraw, and their amazement as their children achieved despite fatigue, pain, and treatment. They talked of learning to find the right way, as a parent, to support their children with whatever IBD threw at them.

Understanding the wider ripples of chronic illness

Parents’ stories bubbled out of them and we listened; not as part of the research study itself, but as people engaging and connecting with stories that needed to be told.

Maybe one of our next studies will focus on parents’ experiences. Parents play a vital role in their child’s IBD journey, and we need to better understand how they can best support their child. In addition, we need to know what support would make their journey, as parents, easier and better informed, and would give them more confidence to make decisions and suggest solutions or ways forward to their son or daughter.

Being Me with IBD: The interrupted interview

This blog post focus on the challenges of conducting the Being Me with IBD interviews in busy and distracting clinical environments and how we ensure sensitivity to the young participants.

As discussed in our previous blog post we are conducting qualitative interviews with young people in a hospital clinic or a day unit about their experience of living with IBD. The participatory interview techniques we are using give the young person a high degree of control over the interview and reinforce their position as an expert in their own experience. These creative methods also enhance the young person’s ability to tell their personal stories, using their own words. Furthermore, a flexible approach aims to nurture an informal, open conversation, enhance rapport and produce richer data.

The interviews take place either on the day unit during a visit for an infusion or before or after a clinic appointment. We arrange for the interviews to be undertaken in the quietest possible place, whilst taking into account the young person’s clinical needs and what places are actually available and appropriate. All team members, particularly those with less familiarity and experience in conducting interviews in a clinical environment, have reflected on the challenges of undertaking interviews in less than ideal settings.

The interview setting

A quiet space in a hospital is often difficult to find.

We have conducted interviews in the waiting rooms of busy gastro clinics, gastro clinic consulting rooms, cubicles on day units, a matron’s office and a private specialist research room. Some of these spaces were more interrupted than others, and each brought challenges for creating a private, comfortable research space. The luxury of a private room off the main day unit may seem ideal but it brings with it repeated interruptions by nurses undertaking the young person’s regular ‘infusion’ observations and checks being done to their infusion pump. When using the ward managers office to conduct an interview, we had to pause the interview several times mid conversation due to the ward manager needing access to the office.

It’s clear that finding an ideal space to undertake an interview is tricky and this can be compounded by other issues such as background noise such as the hum and bleeping of machines. Other concerns need consideration such as the audio-recorder picking up other people’s conversations or others being able to over-hear the details the young person is sharing with the researcher.

Finding a quiet and private space is a balancing act between giving the young people the opportunity to participate without having to extend the time they are at the hospital and ensuring that they remain under the supervision of a nurse where necessary.

Managing interruptions

The reality is that conducting interviews in a clinical environment is complicated. For the team members who were new to this environment, a certain amount of familiarisation with the clinical setting was required, and this included developing a basic understanding of the clinical routines and medical terms. For example, a young person having an infusion needs half hourly observations, so it helps to time an interview to start straight after a set of observations have been taken. Researchers working within clinical settings have less situational control than in other settings and they need to be able to manage distractions and interruptions; this takes skills, focus and confidence. While an interviewer in someone’s home may have interruptions and distractions to manage, in a clinical setting they also  need to be sure that the processes related to the study (consent, interview, de-briefing etc.) do not impact on the young person’s clinical care, for example, by delaying the start of their treatment.

Each disruption, however important to either the young person’s care or the smooth running of the setting, carries the potential for a breach of a young person’s confidentiality. We have become skilled and accustomed to pausing and picking up the threads of our conversations as appropriate and ensuring that the audio-recording is paused during any clinical interactions.

The disruptions have and can affect the interview although with skill we can mediate the impact of this and, on occasion, the disruptions can give rise to new directions for the interview. Whilst clinically based interviews are not ‘text-book’ interviews they are real and authentic.

As ever we are grateful both for the young person’s understanding and the work of the clinical team for enabling our access and supporting this study.

Thanks for your interest in our study

The Being Me with IBD Study Team

Being Me with IBD: Using creative methods in a clinical setting

In this blog we focus on how the Being Me with IBD study is drawing on a range of data collection methods and techniques in line with its participatory approach and underpinned by values of person-centredness.

The quantitative approach

There are two distinct but complementary data collection phases to the Being Me with IBD study. Phase 1 is a quantitative survey using validated scales which asks the young people to numerically rate factors including friendships, loneliness, depression, anxiety, health and self-efficacy (sense of control over their lives). We understand that asking young people to complete a survey about their experiences of friendship and loneliness could be upsetting. We have aimed to be sensitive in the scales we have used and we take care to check in with the young person after they have completed the survey to make sure that they are feeling okay. When a participant hands the survey back to us we score two of the scales and if one or both of them score above a particular number, we flag this is a cause for concern about their well-being.  Any young person who triggers a flag is made aware of our concern and we talk through who they may turn to for support. We also activate a robust process with the clinical team for following this up.

The qualitative approach

The young people who complete the survey are asked if they would be interested in taking part in Phase 2, which is a qualitative interview and is arranged to take place at a subsequent appointment. The interview gives the young person an opportunity to talk about their experiences of living with IBD and about their friendships, what they value about their social connections, aspects of friendships that are difficult and how they feel having IBD has impacted on these friendships. We also discuss any future concerns they may have about their IBD (such as starting work or going to college or University) and future relationships.

Using creative approaches to support interviews

We have designed two creative approaches to assist the discussion with the process also supported by an interview guide. During the interview, the young person can draw a friendship map to highlight their friendships and connections and/or use their own (hard copy or phone-based) photographs as a basis for discussing their friendships and things that may affect or impact these. The creative approaches have been designed to give the young person as much control over the interview as possible by allowing them to choose the starting point for the conversation and help them to focus on the things that matter to them in living with IBD.

Over the first few interviews, we discovered that some young people were less interested in participating in the creative techniques while others were unable to draw a map due to being connected to an infusion pump which limited their movement.

The benefits of a flexible approach to interviewing

In this study, a significant advantage of a flexible approach has been to allow the young person to decide how they want to engage in the interview. The young people who have chosen to participate in a creative exercise have used the opportunity to lead the discussion and have been very comfortable in doing so. In these interviews, the researcher’s role has been to guide and prompt the discussion with the participant leading the direction of the conversation. Offering the chance for an interview without the additional options means that we are inclusive of those young people who prefer to steer away from the creative methods.

The use of surveys and interviews (without or without creative methods) has helped to provide richer data than using a single method and we hope it will lead to a greater insight into the young people’s lives.

Thanks for your interest in our study

The Being Me with IBD Study Team

Being Me with IBD:  Spreading the word

In this blog post we talk about how disseminating the ideas, progress, and findings of the Being Me with IBD study is something we’re thinking about all the time.

Disseminating as we go

Research is undertaken to find things out. However, although finding things out can be valuable it isn’t particularly helpful unless the researchers share what they have discovered as widely as possible.

For us, dissemination means that we are planning on sharing our findings in the usual ways such as writing papers for publication and speaking at conferences. However, we have already started to share aspects of the study with the wider public through our blogs, tweets, and through our contacts with local Crohn’s and Colitis UK support groups. We’re also going to be working with young people with IBD to identify the best ways of sharing the findings from the study with other young people.

What have we done so far and what are we planning?

  • Getting animated. One of the first things we developed was a short animation about the study.

In less than three minutes the animation takes the viewer through the background to the study, the aims, methods for data collection, and analysis of the data, providing an overview of our social media presence.

  • Blogging. This blog is just part of the way we are using social media to reach out to people well beyond those who we directly engage with in the day-to-day running of the study.
  • Twitter. We’re also tweeting about things we think will be of interest to the IBD community. If you want to find us, we tweet using #BeingMeWithIBD.
  • Workshops. Although these are a little way off, we’ll be running some workshops with young people to find out the best ways of sharing our findings and the best places to share them. If you have any ideas on ways or places we should be sharing our work then please let us know.

Thanks for your interest in our study

The Being Me with IBD Study Team

Being Me with IBD:  Mental health and IBD

This blog reflects some of the reasons we wanted to undertake the Being Me with IBD study to explore the impact of IBD’s on young people’s friendship, loneliness and mental health. It also reflects our contribution to Children’s Mental Health Week 4th – 10th February 2019 and the recognition of how physical ill-health can impact on mental wellbeing.

Mental health in adults with IBD

People with inflammatory bowel diseases (IBD), including Crohn’s disease and ulcerative colitis, experience poorer mental health compared to their healthy peers. Doctors have argued that this stems from IBD being incurable, unpredictable, and from the significant side effects from the surgical and medical treatment. The number of adults with IBD who report mental ill-health is very high – about 60% – with higher rates of both anxiety and depression symptoms among those with IBD compared to healthy individuals. The risk of anxiety and depression is also higher for those whose disease is active compared to inactive[1]. However, even when medical professionals know patients are suffering from anxiety and/or depressive symptoms, few receive adequate care.[2] In the UK, only 12% of adult IBD services have a clear referral pathway for patients to access clinical psychology services[3]. This means that most adults with IBD who suffer from mental ill-health do not have access to appropriate help and support.

Is the picture any different for children and adolescent patients with IBD?

Research with young people with IBD shows they report poorer quality of life[4] [5] and experience a higher incidence of anxiety and depressive symptoms than in the general population[6]. However, there are no official reports about referral pathways for these young people; we simply have no idea whether these children and adolescents get help for these issues.

Several studies on IBD suggest that if individuals already suffer from mental ill-health, this impacts on how well they cope with IBD symptoms. In one study, just over half of individuals with IBD who reported depression said they had experienced depression before the onset of their IBD[7]. Combining that knowledge with findings from a study of children, where the authors concluded that having IBD increased the risk of developing anxiety or depression[8], we see that the relationship between mental ill-health and IBD is complex.

How can children and adolescent patients with IBD be better supported?

It is the case that IBD brings about a whole set of situations that could contribute to worsening mental health, BUT how we are feeling when those things occur also impact future mental health and IBD symptoms.  Knowing that provides clear directions for supporting people with IBD: screening should be put in place for all IBD patients, including children and adolescents, so that mental health support can be there from day one, enabling people to cope with symptoms effectively. But, we also need clear referral pathways available throughout treatment, with regular mental health monitoring.

Thanks for your interest in our study

The Being Me with IBD Study Team

 

[1] Mikocka-Walus et al. (2016) https://doi.org/10.1097/MIB.0000000000000620

[2] Bennebroek Evertsz et al. (2012) https://doi.org/10.1186/1471-244X-12-227

[3] Royal College of Physicians (2014) https://www.rcplondon.ac.uk/file/1122/download?token=xOdBTaIm

[4] Greenley et al. (2010) https://doi.org/10.1093/jpepsy/jsp120

[5] Engelmann et al. (2015) https://link.springer.com/article/10.1007/s10578-014-0471-5

[6] Conley, S. and Redeker, N. A (2016) https://doi.org/10.1111/jnu.12189

[7] Walker JR et al. (2008) https://insights.ovid.com/pubmed?pmid=18796096

[8] Loftus et al. (2011) https://insights.ovid.com/pubmed?pmid=21537359

Being Me with IBD:  The genesis of the study

In the second of our blogs we talk about the values underpinning the Being Me with IBD study and why we think these are important.

What we value shapes our research

The Being Me with IBD study is based on the values of participation, sensitivity, curiosity, person-centredness, respect, and collaboration. Those values shape how we have approached the study and have been fundamental in how we have taken the original idea and turned it into a study that allows us to approach young people and talk to them about friendship and loneliness.

We know that IBD is an incurable, chronic, and relapsing condition and that some young people with IBD report depressive symptoms[1]. However, most studies don’t ask young people with IBD whether they are lonely or whether their friendships have been affected by having IBD. We think that questions about how IBD affects friendships and influences feelings of loneliness are important to ask. But we know that we need to ask those questions carefully. This is where our values come into their own.

  • Participation. We worked with some young people early on in the design of the study because we wanted to be sure that the design was appropriate. We are continuing to work in participation with the young people who are members of our e-advisory group. Their contributions will help us to ensure that the findings will be useful for other young people. Participation is worthwhile, rewarding, and helps to deepen our engagement in research[2].
  • Sensitivity. Talking or thinking about friendships and loneliness can be tricky. We know that asking young people to fill in questionnaires or to talk about their experiences of friendship and loneliness can be upsetting. We’ve been as sensitive as we can be in the choice of the questionnaires we use and the way we undertake the interviews.
  • Curiosity. Researchers are inherently curious. It is what drives us to do research. We want to find answers to the questions we have. What we have discovered doing this study is that many of the young people who have participated or who have helped us as members of our e-advisory group are equally curious. Those young people want to find out more about how other people get on and whether or not their feelings are similar or different to those of other young people with IBD. While curiosity is generally seen as a good thing, we have to be careful that we don’t let curiosity carry us away!
  • Person-centredness. Talking about being person-centred is a way of saying that the young person is absolutely at the centre of what we do and how we think. Although we’re aiming to recruit up to 150 young people to the study, we know that each of them is unique with their own IBD stories to tell and with their own experiences to share. We aim to treat every young person as an individual.
  • Respect. Respect is a value that is important to us. We aim to show respect to all of the young people we meet, regardless of whether or not they decide to participate or decline to participate in the study. We’re equally respectful of the fact that there are lots of people such as clinicians, research nurses, and administrators who help the researchers to ‘get the research done’.
  • Collaboration. Collaboration is the reason that research studies work and data can be collected. Our collaborations involve working with people in each of the three research settings, with the wonderful Research Team at Crohn’s and Colitis UK who have funded the study, and a whole host of people involved in ethics, sponsorship, and governance. We also collaborate as a team, checking that things are progressing okay, talking through issues that arise, and sharing the work.

Being up front about the values that underpin a study is really important. It’s not on most research tick lists, but we’ve found that being clear about our values ensures that the Being Me with IBD Study is undertaken properly.

Thanks for your interest in our study

The Being Me with IBD Study Team

[1] van den Brink et al. (2016) https://bmjopengastro.bmj.com/content/3/1/e000071

[2] Coyne, I. & Carter, B. Being Participatory: Researching with Children and Young People. Springer. Submitted 4th September 2017. ISBN 978-3-319-71228-4