Empowered transitions: Understanding the experience of transitioning from pediatric to adult care among adolescents with inflammatory bowel disease and their parents using photovoice

Abstract

Objective:

To identify barriers and facilitators of pediatric to adult transitions among adolescents with IBD and their parents.

Methods:

This cross-sectional study used photovoice to explore adolescent and parent perspectives on transitions in IBD care. Adolescents with IBD aged 14—23 and their parents were recruited from an urban IBD center during clinic visits. Participants completed a survey, took photos, participated in a semi-structured interview, and optionally participated in a focus group. Interviews were recorded and transcribed. Two analysts coded interview data for themes using MAXQDA software.

Results:

Thirteen adolescents and eleven parents submitted photos and participated in an interview. The mean patient age was 19.0 ± 3.0. The mean parent age was 51.5 ± 5.4. Eleven (84.6%) adolescents were Caucasian; 12 (92.3%) privately insured; 4 (30.8%) in high school, 5 (38.4%) in college, and 4 (30.8%) in the workforce. Adolescent transition-readiness, resilience, and IBD-related self-efficacy scores were relatively high, with high agreement between patient self-report and parent-reported children’s resilience; parents over-estimated their children’s IBD-related self-efficacy. Participants discussed barriers to transitions including psychological distress, disease uncertainty, gut-brain axis-related issues, a lack of understanding by people unaffected by IBD, and frequent life disruptions. Facilitators of transitions included having a disease narrative, deliberately shifting responsibility for disease management tasks, positivity/optimism, social support, engagement with the IBD community, and mental health support.

Conclusion:

Attention to psychosocial issues is warranted during the transition process from pediatric to adult IBD care, specifically related to understanding the gut-brain axis and accessing resources to optimize mental health and well-being among transition-aged adolescents and their caregivers.

1. Introduction

The inflammatory bowel diseases (IBD) that include Crohn’s Disease and ulcerative colitis are chronic gastrointestinal disorders often diagnosed in childhood or adolescence. The incidence of IBD is 10 in 100,000 pediatric patients in the U.S. and Canada [1], with rising rates of pediatric-onset IBD globally [2]. Pediatric-onset IBD, which tends to be more extensive with more severe progression than adult-onset IBD [3], is associated with numerous physical, social, and emotional problems due to the chronic waxing and waning nature of the disease that may impact nearly all aspects of life and development [4]. Many adolescents with IBD are further vulnerable to poor outcomes and high health costs, partially attributable to disruptions in care during the shift from pediatric to adult health care settings [5,6].

Nearly 80% of adult gastroenterologists report inadequate preparation of patients transferred from pediatric care settings [7]. Additionally, many gastroenterologists believe that they are inadequately trained to address adolescent medicine topics that impact newly transitioned patients [8]. Further, there is no universal consensus about the timing of initiation and completion of the transition process and access to structured transition readiness programs is lacking [9].

Transition readiness is defined as skills related to knowledge, information gathering, self-management, and decision-making that must be mastered by a patient in preparation for a healthcare transition [9–12]. Previous work with adolescents and their parents found that transition needs include addressing the fear of losing relationships with pediatric providers, a perception of poorer quality of adult care, misunderstandings about the transfer process, and lack of knowledge about healthcare insurance and finances [7,13]. Suggestions to improve transitions have included physicians meeting alone with adolescents during appointments, providing concrete guidance on responsible transitions, and increasing accountability of adolescents [7]. Additionally, a small mixed-methods study of Canadian young adults identified the need for “individualized and multifaceted” transition interventions, in both format (websites, handouts, appointments) and content (medications, insurance issues, etc.) [14] Studies also suggest that adolescents should be in stable health during transitions [7,14].

Despite these insights, there remains a need to better understand the contextual and psychosocial experiences of patients with IBD through transitions. Given the critical role of parents in medical decision making and the differential emphasis of the caregiver role in pediatric versus adult IBD care paradigms [9–12], it is critical to include caregivers in this process [15,16].

To address this need, our study employed photovoice, a community-based participatory research (CBPR) methodology used in health education and other fields, which uses photographic images to identify, represent, and enhance participants’ personal experiences [17]. The goal of this study was to explore the lived experiences of patients and parents impacted by IBD, and characterize psychosocial barriers and facilitators of transitions from both perspectives.

2. Methods

2.1. Participants

Adolescent participants and their parents were recruited from a single Inflammatory Bowel Disease Center during routine care visits between September 2019 and March 2020. The lead researcher (JF) screened clinic schedules for participants who met age criteria (14–25 years), lived with IBD for >1 year, and spoke English. JF consulted the treating gastroenterologists who were versed in the study protocol. The clinicians recommended patients to approach who they believed would be engaged, had caregivers who might be willing to participate, and whose disease was stable. JF approached all prospective participants based on the physicians’ recommendations. Although attention was paid to recruit a diverse range of participants in terms of age and representative demographic characteristics of the IBD Center, those that completed all study procedures and were ultimately analyzed were whiter and wealthier than a random sample at the IBD Center would have been. This technique was the most practical for this study due to the resources and time of the study team. The study protocol was approved by the Institutional Review Board at the Icahn School of Medicine at Mount Sinai (IRB-19-01919).

2.2. Procedures

Written informed consent was obtained from the adolescent participants and their caregivers. At the time of consent, all study procedures were reviewed, and questions addressed. The procedures involved completion of self-report questionnaires by both adolescents and parents, and training in photovoice methodology.

2.3. Questionnaire

The adolescent questionnaire included demographic information as well as questions about transition-readiness including disease management tasks, self-efficacy, and resilience. The Transition Readiness Assessment Questionnaire (TRAQ) [18] was used to explore competencies with various disease-management tasks (e.g., appointment-keeping, tracking health issues, talking with providers, and managing medications and daily activities). The TRAQ consists of 20 items with a 5-point Likert scale (range 20–100). While there is no pre-specified cutoff for transition readiness, higher scores indicate higher performance [ 2]. This measure on its own is limited in its ability to predict transition readiness independent of age, therefore, resilience and self-efficacy measures were also included [5,19]. IBD-related self-efficacy was evaluated using the IBD Self-Efficacy Scale-Adolescent (IBD-SES-A) [20], a 13-item measure with a 5-point Likert scale (range 13–65) used to assess adolescent’s confidence in their ability to execute behaviors necessary to manage their disease (e.g. managing medical care, everyday life with IBD, feelings, and future). Resilience was measured using the CD-RISC [21], which contains 10 items with a 5-point Likert scale (range 0–40) to evaluate adolescent’s perception of their ability to recover from adversity. Higher scores on both the IBD-SES-A and CD-RISC indicate higher performance. The parental questionnaire included demographics and the same validated scales of IBD-related-self efficacy [20] and resilience [21], re-worded to ascertain parent’s perceptions of these constructs in their children as a means of evaluating whether adolescents and their parents agree.

2.4. Photovoice

Photovoice is a method to create, curate, and discuss photographs to catalyze personal and community change [17]. Adolescent and parental participants used camera phones to document their experiences in 5–20 photographs with captions in response to the provided prompts (see Table 1). They were encouraged to interpret the prompts, focusing on a range of individual, family, and community factors to be discussed in the debriefing interview and optional focus group [22]. Participants were encouraged to take approximately 2 weeks to complete the photos, though some took longer. This method was selected to give participants time and creative ways to grapple with challenging concepts.

Table 1.

Photovoice prompts.

Photovoice Prompts for Adolescents

Photovoice Prompts for Parents

• What does your IBD mean to you?  • What are your goals?  • What are your parent’s goals?  • What does a good day look like?  • What does a bad day look like?  • What do you want your care team to know about you that they might not already know?  • What does it mean to you to be a pediatric vs. an adult patient?  • What are you afraid of?  • Where do you see yourself in the future?

• What does your child’s IBD mean to you? • What are your goals? • What are your child’s goals? • What does a good day look like? • What does a bad day look like? • What do you want your care team to know about you as a person that they might not already know? • How does it feel to have a child in a pediatric vs. an adult GI practice? • What are you afraid of? • Where do you see your child in the future?

Once the photos were taken and uploaded to a secure, password-protected online platform, participants engaged in a semi-structured interview to discuss the photos. The lead author (JF) conducted all interviews. Interviews followed the PHOTO technique [23] which prompts participants to describe the photos with a series of standard questions: 1) “Describe your photo,” 2) “What is happening in this photo?” 3) “Why did you take a picture of this?” 4) “What does this image tell us about your life?” and 5) “How can this image provide opportunities to improve life with IBD and/or the transition process?” Interviews lasted approximately 45-min to one hour. Adolescents and parents were interviewed separately.

Upon completion of all study interviews, participants were invited to participate in a focus group to debrief the experience, build community, and discuss next steps. Adolescent participants received $5 for completion of the survey, $20 for completion of the interview, and $20 for participation in the focus group.

2.5. Analysis

Interviews were audio recorded and transcribed verbatim by the study team. The photos themselves were not coded, but the written captions were read aloud during interviews for transcription and subsequent analysis, as were all verbal elaborations of the photos from the interviews. Identifying information was removed from the interviews during transcription. The transcripts were analyzed for thematic content using an inductive qualitative analytic approach. Two authors (JF & HK) trained in qualitative data analysis independently reviewed four adolescent interviews and identified codes and sub-codes. The two authors convened weekly to review and discuss the analysis. KG served as a consultant. After refinement of the codes, response patterns were organized into a codebook, which consisted of main themes and codes (sub-themes) that were developed from meaning units (verbatim quotes). This process was repeated for the parent interviews. All interview analysis used MAXQDA Analytics Pro 2020 (Version 20.0.7, Berlin). Inter-coder reliability was ascertained using MAXQDA’s data analysis feature, and Cohen’s kappa coefficient across all interviews was 0.79. Data from the surveys were analyzed using Qualtrics XM. Focus group content was not formally transcribed and coded, but suggestions for future steps are discussed.

3. Results

Sixty-four adolescent patients were approached during their clinic appointments and 28 met inclusion criteria and signed a study consent form. Of those, 13 (46.4%) were included in the sample based on submitting photos and completing an interview. More than half (53.6%) of adolescents who originally consented did not complete the photo assignment or interview. While one participant explicitly withdrew participation due to school responsibilities, 14 adolescents were considered lost to follow-up (did not respond to three reminder emails). Of those adolescents lost to follow-up, two of their parents submitted photos and were interviewed. However, these were not analyzed due to missing data from their children. Of the 13 adolescents who participated, there were two sets of siblings (n = 4), leaving 11 parents in the adult sample. Table 2 summarizes the descriptive characteristics of the participants, who were predominantly Caucasian, privately insured, and financially stable. The patient sample was heterogeneous regarding educational/professional stage. Ten mothers and one father participated in the study. Participants submitted a total of 209 photos that were discussed in the 24 interviews and serve as the basis for the themes described below. Nine of the 13 adolescents and six of the 11 parents participated in their respective focus groups.

Table 2.

Descriptive characteristics of the patient and parent samples.

Patient Sample	N = 13	Parent Sample	N = 11
Age	19 ± 3.0	Age	51.5 ± 5.4
IBD duration	6 ± 3.7	Number of children in household	3.1 ± 0.9
Gender		Gender
Female	9 (69.2)	Female	10 (90.9)
Male	4 (30.8)	Male	1 (9.1)
Race/Ethnicity		Live in same household as child?
White	11 (84.6)	Yes	6 (54.5)
Asian	1 (7.7)	No	1 (9.1)
Other	1 (7.7)	Some of the time	4 (36.4)
Ashkenazi Jewish		Household income
Yes	9 (69.2)	$10-50 k	1 (9.1)
No	4 (30.8)	$50-100 k	0 (0.0)
Insurance Status		$100-150 k	1 (9.1)
Privately Insured	12 (92.3)	>$150 k	8 (72.7)
Medicaid	1 (7.7)	Prefer not to answer	1 (9.1)
Occupation
High school student	4 (30.8)
College student	5 (38.4)
Workforce	4 (30.8)
Parent with IBD
Yes	1 (7.7)
No	12 (92.3)
Sibling with IBD
Yes	4 (30.8)
No	9 (69.2)
Self-Report Transition Readiness Score (TRAQ) (min = 20, max = 100)	74.2 ± 12.6
Self-Report Resilience Score (min = 0, max = 40)	30.2 ± 6.0	Parent-Report of Children’s Resilience (min = 0, max = 40)	29.1 ± 8.6
Self-Report IBD Self-Efficacy Score (min = 13, max = 65)	42.3 ± 4.5	Parent-Report of Children’s IBD Self-Efficacy (min = 13, max = 65)	52.4 ± 4.2

Table 1 includes key demographic information about the adolescent and parent participants, as well as validated metrics including the Transition Readiness Questionnaire (TRAQ), 10-item Connor-Davidson Resilience Scale (CD-RISC), and the IBD Self-Efficacy Scale for Adolescents (IBD-SES-A). Note: There are no cutoff scores for the TRAQ, IBD-SES-A or CD-RISC, but higher scores indicate higher performance.

Here, we focus on the barriers and facilitators of transitions from the adolescent patient and parent perspectives that emerged during the interviews. Adolescent participant’s quotes are denoted with an A and parent quotes are denoted with a P.

3.1. Transitions barriers

3.1.1. Psychological distress

A majority of patients expressed the psychological toll of living with IBD. Several participants described issues relating to anxiety and depression, worries, and body image challenges that influence how patients relate to their disease.

One participant (A13) submitted a photo of total darkness: “I don’t want to believe that life will never return… I always want to say, ‘the light’s going to come back. It’s not all bad. Sometimes it has to get worse before it gets better’… I just fear that I can dive into that pit and never come out.”

Other patients describe feeling like a “burden on [their parents]” (A3) causing them to keep symptoms and distress hidden. Despite this attempt, parents describe their own psychological distress, living in “full panic mode” (P2) when their children are sick.

One parent (P6) describes a debilitating level of worry: “To be completely honest, I’m always a worrier… When you go online it’s all catastrophe. Everybody dies on the internet… if [my daughter] didn’t call me back, I’d be like, ‘Oh God, she’s on the floor in a bathroom. She passed out… she’s dead.’”

3.1.2. Disease uncertainty & lack of control

Both patients and parents reported feeling “out of control.” Patients describe how their symptom uncertainty impacts their daily lives and futures. Adolescent 9 submitted an image of question mark, stating: “For me there was a lot of uncertainty and I feel like my IBD has just made a lot of things unpredictable and that can be scary because I don’t know what the future holds. I don’t know how long medication will work or how long until something bad could happen.”

The uncertainty is similarly destabilizing for parents who help their children to navigate this ever-changing, dynamic disease. This parent submitted an image of a roller coaster:

P6: “It’s a roller coaster… The hardest thing is how unpredictable it is.”

3.1.3. The gut-brain axis

Disentangling whether gastrointestinal symptoms are a result of active disease versus stress emerged as a challenge. Several adolescents notice a direct relationship between stress and “the gap [they feel] between objective markers and subjective symptoms” (A12). Many find it distressing not to know whether their symptoms are physiological or psychological. One participant submitted a self-portrait with a shadow covering half of his face and elaborated:

A1: “I know not all of the pain I’m having is caused directly by Crohn’s, a lot of it could just be in my mind, and it bothers me that I can’t separate that … Often when [my pediatric GI] asks how my pain is…what is from stress of school and things going on at home and what is actually from the Crohn’s, I just don’t know how to differentiate between the two… I’m afraid of what my mind can do to myself.”

Drawing distinctions between symptoms of the mind versus the gut can also lead to conflicts with the medical team and feelings of invalidation, especially when doctors imply that symptoms originating from the mind, in the absence of endoscopic disease are not “real.”

A3: “I feel like I’m not being taken seriously at all… I completely acknowledge that when I get super stressed out it makes my stomach worse. But for me there’s such a difference and I know the difference… I was being told that what I was feeling ‘wasn’t real’ and I need to ‘work on it in my brain’… I need to convince my doctors that what I’m feeling is real, which is really frustrating.”

Parents echo the difficulty of not knowing the origin of their child’s symptoms, “whether it’s a regular stomachache or something worse,” but recognize that they can help by de-escalating the stressful “spirals” that ensue when their children feel unwell (P6).

This mother describes her daughter’s initial skepticism but slow acceptance of the gut-brain axis as a higher-order skill that has come only after the mastery of more basic disease-management tasks: “[My daughter] is suspicious [of the gut-brain axis.] To her, it’s hocus pocus, but she’s starting to take more responsibility… Now the other stuff’s kind of getting integrated, she can look at the finer pieces. It was almost like she had to do all the gross motor stuff before she could do the fine motor, if that makes any sense.”

3.1.4. Others don’t understand

Many adolescents submitted photos related to the challenge of conveying their experiences with IBD to others and how “hard it is for people to fully get it” (A6). Adolescent 3 submitted a photo representing herself with a smiling mask on. She describes, “For me the most difficult part is that it is an invisible disease and that I’ll look completely normal but feel so sick. A lot of times if I’m out I feel like I have to put on this mask… It’s hard to explain why 10 minutes ago I was okay but now I need to go home.”

Parents similarly acknowledge that other parents cannot relate. Some describe changing their expectations of friends over the years to avoid becoming completely isolated. For others, even when support is present, it can be exhausting to leverage support while feeling overwhelmed just managing their children’s illness.

P3: “You know, [I have] my sister… and I’ve got plenty of friends, but I let them all go. I just wasn’t in touch. I had no time, no energy, no capacity. And even after [my daughter] became well, I’m just so burned out… still no capacity for it… I know that there are people, if I need to, I can reach out I’m not alone, but I’m just so tired. I just want quiet.”

3.1.5. Disruptions to daily life

IBD brings disruptions to nearly every aspect of daily life, from missing school—often for months at a time—to missing social activities, forgoing travel, eating highly specific diets, avoiding public transportation, and worrying about bathroom concerns. Navigating such disruptions emerged as a theme for both children and parents.

A1: “Lastweek, I spent a third of the day just sitting in the nurse’s office because I was in so much pain from eating. I couldn’t lay down because that hurt more, so literally just sitting there…I was sweating from the pain… So, the next day I was like, no… not going to school.”

Parents face disruptions to their own lives and are forced to reprioritize in order to help their children manage (See Fig. 1)

Fig. 1.

One parent’s response to the prompt: “What does your child’s IBD mean to you?”

Parents also mention how IBD can strain family dynamics:

P11: “It puts a strain on couples. I know from talking with other people… Your time is split up and then in a certain way, I think a child with IBD, it’s almost like you have another child, right? … In terms of the amount of time and effort that is required to properly take care of that.”

3.2. Transitions facilitators

3.2.1. Disease self-management

In this population, a critical aspect of transitions is the shift of disease management tasks from parents to children. For most, this shift occurs as a gradual process of shifting discrete responsibilities over to the child, including communicating directly with doctors, scheduling appointments, advocating for accommodations at school, setting up infusions or self-administering medications, ordering medications and supplies, working with insurance companies, and managing meals and diet. When successful, this process requires open communication between parents and children and a clear delineation of roles.

Interestingly, using the IBD-SES-A²⁰ to evaluate patient self-report and parent report of children’s self-efficacy, we found that parents overestimated their children’s IBD-related self-efficacy by an average of 10 points (adolescent score 42.3, parent score 52.4).

A12: “[My parents] really empowered me to know that I could and should take care of myself, but that I would always have them as a safety net… In college I definitely relied on them quite a bit in terms of ordering my medication and handling so much of the logistics.”

Based on each family’s circumstances and needs, different responsibilities shift at different times. For many, transitions out of the home such as for college or summer camps have catalyzed a shift toward independence.

P5: “[My daughter] had a lot of leaks when she was at camp. It was during that time period where she took control She took charge and she learned, she just started doing everything herself.”

When these transitions occur during times of high disease activity, however, it may be necessary for parents to take on a more active role.

P7: “During her first 10 weeks of school, I had to be there seven weekends because she had a fistula and she was going for treatment.”

Asking for help when needed emerged as an important strength when shifting responsibilities.

P11: “[My daughter] would sometimes call, which I saw as a great coping strategy… I knew that she would ask for help if she needed it That’s really critical.”

Parents discussed straddling the fine line between empowering their children to be independent while also shielding them from the burden.

P8: “I did so much of [the management] because I wanted to baby him and protect him. I didn’t want him to have to deal with anything extra… I think if I had given him that push earlier on, he would have taken more ownership earlier on.”

3.2.2. Disease narrative

When discussing ingredients for successful transitions, several of the older participants described the importance of having a disease narrative and vocabulary to talk about IBD to others. Owning this narrative can break down stigma associated with IBD. One participant created a photo web, with a post-colonoscopy photo in the center, revealing how her IBD is at the center of her personal narrative. She describes this image:

A12: “I found that the way that I’ve achieved empowerment for myself is by talking about it with friends. All through high school I told maybe two or three people and it was just very hush hush … By being able to talk about it through an empowered sort of tone has been a way to reduce stigma for myself because it encourages others to engage with my disease the way that I want them to. I set the tone for it”

Several of the adolescents explained that living with IBD has made them resilient and fostered character strengths such as empathy.

A5: “You never know how strong you are until being strong is the only choice you have. I always thought I was weak, and I couldn’t do it until I didn’t have a choice… We don’t know it until we have to go through it”

Parents identify their own influence on the development of their children’s IBD narratives:

P7: “[My daughter’s] got a lot more confidence than a lot of these other kids. I think a lot of that is the way I raised her… I never made her feel like she was a sick kid. I tried to always say to her, ‘everybody has something, but you live with it and you learn how to fight it.’”

3.2.3. Optimism & positivity

In addition to sharing a positive disease narrative, a majority of participants believe in the importance of a positive attitude, a belief that things will get better, and the power of positive emotions such as humor in enhancing their lives through illness. Using the CD-RISC [21] to evaluate patient self-report and parent report of children’s resilience, children and parents had high agreement on children’s resilience (30.2 and 29.1 respectively), which indicates a highly resilient sample, consistent with a prior study of transition-aged adolescents from the same center [2].

A8: “I think positivity is the best way to get through any tough time and everybody that has Crohn’s has a different experience but as long as you stay positive and enjoy the good parts of your life, you’ll have good memories to look back on.”

While positivity does not always come naturally, it is a competency that can be deliberately harnessed. (See Fig. 2.)

Fig. 2.

One participant’s response to the prompt: “What are your goals for the future?”

Some endorse using negative comparisons as a means of coping, “reminding myself that people have it a lot worse” (A3).

Parents endorse the importance of a more measured, realistic optimism:

P5: “I’m a realist, so I never say, ‘it’s going to be better.’ I don’t know that it’s going to be okay. I hope deep down it’s going to be better, but there are too many variables. For me, it’s really just about managing through the day and taking it one day at a time.”(See Fig. 3.)

Fig. 3.

One parent’s response to the prompt: “What does your child’s IBD mean to you?”

As a means of staying positive, many parents take the cues directly from their children. Parent 11 states:

“On days when I would feel a sense of frustration or being overwhelmed, I would always bring to the forefront how hard [my daughter] was working. And how she was at times struggling, but that she was also using all of her energy and power to put her best step forward. And that if she could do it, I certainly could do it.”

3.2.4. The IBD community

Several of the young adults reported finding meaning by engaging with the larger IBD community. For example, many have volunteered with the Crohn’s and Colitis Foundation of America (CCFA) or attended Camp Oasis, a 1-week summer camp for children with IBD.

A4: “Camp Oasis literally has changed me… I was just able to see how far I’ve gotten.”

Community involvement enables patients to receive advice from those who understand their shared struggles, and provides a way to, “cope by talking to other people through their problems. It’s a way for me to talk about what works for me and then it’s a reminder to myself of how I’m doing as well as I’m doing now” (A5). (See Fig. 4.).

Fig. 4.

One participant’s response to the prompt: “What does your IBD mean to you?”

Additionally, several of the adolescents have made career and academic choices inspired by their experiences living with IBD [e.g. interning at the American Gastroenterology Association (AGA), pursuing public health or biomedical engineering degrees, working in biomedical research, or pursuing teaching to support students with chronic illnesses].

A5: “I interned at the AGA this past summer and it was a really cool experience to do stuff that furthers IBD research… I want to work in a health-related field because I want to help people and feel like I’m doing something to help other people that have similar kinds of struggles.”

This connection to the IBD community is not only protective for the adolescents, but also for their parents. Parent 8 describes the “silver lining” of going through the diagnosis experience with another family:

“At the same time that [my son] was diagnosed, his friend was also being diagnosed. We became good friends with his friend’s mom… She and I together navigated… The mom says it was the silver lining that they found each other, and she and I found each other… Symptoms were completely different …. but it was still nice having them to bounce things off of and vice versa. And then she got us more involved with the CCF.”

3.2.5. Social support

Adolescents reflect on the invaluable support of their families, particularly their parents. Support from friends is most valuable when patients can share their disease narratives.

A8: My friends all know about it and they’re pretty supportive and I think my family are my biggest supporters… I used to not be [open about my Crohn’s] but now I am… When I was the honored hero at the Crohn’s talk last year, I wanted to get a bunch of my friends to come, so that was my way of telling everyone so then I got a bunch of people to show up in support of me.”

For parents, the medical team was cited as an additional source of support, especially when parents feel ill-equipped to help their children.

P6: “I’m a grown up and I’m supposed to help [my daughter], and I’m so out of my league and [our Pediatric GI] was so calm and so experienced and was just very like, ‘okay, we’re gonna fix this.’ That it was just like, ‘Oh, thank God there’s a grown up in charge. I’m out of my depth.’”

3.2.6. Mental health support

In addition to the aforementioned strengths, several participants endorsed the utility of mental health support (i.e. psychological counseling or therapy) to help control the emotional aspects and anxiety associated with IBD.

A2: “Talking with [my health psychologist] helped me a lot just because she helped me understand that what I’m dealing with is chronic… I never really understood what it actually meant to have an illness that’s not going anywhere… I would tell people to reach out to a social worker or a psychologist to get that rundown.”

Parents also endorse the importance of prioritizing their own mental health, be it through informal meditation practices or seeking professional help.

P6: “The parent has to take care of themselves and if that means getting on a little steady medication so that you can say, ‘okay, you’re being ridiculous …. YOU can be the rational voice in your head. It’s really important.”

4. Discussion

In the present study, we used photovoice to identify barriers and facilitators of transitions from pediatric to adult care for both adolescents with IBD and their parents, who may be intimately involved in this process. By using photos, participants had several weeks to explore the narratives that they wished to share with the study team, enabling deeper engagement with challenging content. This method led to the emergence of several common experiences for both adolescents with IBD and parents that can help inform transitions programs to prepare both pediatric and adult gastroenterologists to adequately support outgoing and newly transitioned patients [7,13,24]. Our findings also support the notion that transitions programs ought to move beyond patient knowledge and self-management skills to include broader psychosocial and community factors that influence disease outcomes [13,25].

For example, psychological distress and disease uncertainty emerged as transition barriers, and mental health support emerged as a strength. The psychological burden of living with IBD is well-documented [26,27] and patients with IBD are at an increased risk for the development of mental health disorders including depression and anxiety [26,28]. Further, burdens and hypervigilance related to the uncertainty of living with the disease may be associated with manifestations of generalized anxiety disorder. As psychiatric disorders are freuqently diagnosed in adolescence and early adulthood, have been linked to frequent IBD flares [29], and can be mitigated with mental health support resources (e.g. cognitive behavioral therapies [30–32], gut-directed hypnotherapy [33], mindfulness-based therapies [34,35], and central neuro-modulators [36]), it is critical that these concerns are adequately discussed and supported to optimize transition success.

In addition to addressing psychological distress head-on, recent work has advocated for positive psychology approaches to enhance quality of life and symptom severity in IBD and other digestive disorders [37,38]. As positivity, optimism, social support, engagement with the IBD community, and having a disease narrative emerged as transition facilitators, interventions that explicitly target these features may be effective in the clinical setting. Some of these can also help curb the experience that “others do not understand” as well as psychological distress associated with disruptions to daily life. Novel gut-based positive psychology interventions could be developed for transitions, for example:

• Creating SMART goals [37,39] (goals that are specific, measureable, achieveable, relevant to larger values, and time-bounded) around independent disease management tasks

• Identifying and using one’s unique character strengths to overcome transitions challenges [40,41]

• Authoring a disease narrative to share with others, inlucidng one’s pediatric physician prior to transition and adult physician upon transition, as well as others in the patient’s (or parent’s) life who may not understand the IBD experience

• Expressing gratitude [42–44] to friends, family, and health care team members who are most supportive, including fellow members of the IBD community

• Engaging in community service projects or shared experiences with the IBD community

Further research is necessary to study the effects, optimal ‘dose,’ and ideal administrators of such interventions among transition-aged adolescent and perhaps, even caregivers [37].

Finally, attention to the gut-brain axis as a transition barrier warrants further attention. Participants noted particular stress around not knowing whether symptoms originated from the mind (e.g. stress) or the gut (e.g. a flare) and feeling invalidated from doctors who do not take ‘functional’ symptoms seriously. While basic knowledge of the gut-brain axis was apparent in our sample, there is an opportunity to leverage this topic as a strength and transition competency.

Adolescents and parents must learn about the gut-brain axis and subsequently engage in open conversations with pediatric and adult doctors about how functional symptoms may manifest [45]. (An excellent video on functional abdominal pain for children is presented here: https://romedross.video/MarcusFAP.) Importantly, these discussions require buy-in from pediatric and adult gastroenterologists who may require additional education on disorders of gut-brain interaction (DGBI) (previously called “functional GI disorders”) [46] as well as gut-brain dysregulation in IBD [36]. Physicians must validate patients’ functional symptoms as ‘real’, treat patients accordingly (with neuro-modulators [36] or referrals to the aforementioned therapies [30–35]) and fight dualistic thinking [47] (i.e. that symptoms are either from the mind or active disease) in favor of a more integrated understanding (i.e. these symptoms are real and warrant treatment).

Table 3 contains a summary of novel psychosocial transition recommendations.

Table 3.

Key transitions recommendations based on the present study.

Novel Psychosocial Recommendations for Adolescents with IBD and Parents through Transitions
1.	Develop a disease narrative with specific vocabulary around the meaning and impact of IBD. Think about how the disease has shaped you in a positive way, and how you can talk to friends, siblings, and others about both the challenges of IBD, as well as the strengths is has fostered in you.
2.	Work with parents/caregivers to have a clear delineation of tasks & roles when it comes to IBD management tasks.
3.	Leverage opportunities that arise (e.g. camps, college, professional work) to take more ownership of disease management tasks.
4.	Talk to your doctor about how the brain-gut axis (i.e. how stress impacts your symptoms, and how your symptoms impact stress.) Fight dualistic thinking (i.e. symptoms are either from my brain or my GI tract) and accept that symptoms originating from stress are real! Ask your doctor about treatments for brain-gut dysregulation in IBD.
5.	Seek mental health support to talk about what IBD means in your life, including navigating the uncertainty of the disease and disruptions to daily life due IBD. If possible, find a mental health provider who works with patients with digestive disorders or other chronic illnesses
6.	Get engaged with your local IBD community to meet other patients/parents impacted by IBD (Find your local CCFA chapter to get started: https://www.crohnscolitisfoundation.org/chapters).

4.1. Strengths & limitations

This study has a number of strengths. First, this is the first study to use photovoice among patients with IBD and their parents, a novel method to understand their lived experiences and deconstruct difficult concepts with photographs. As parents are critical in helping their children transition, including this perspective was essential.

Additionally, while a diverse sample of patients was approached to participate in the study, those that completed all study procedures came from primarily white families with medium to high socioeconomic status (only one patient qualified for Medicaid) with relatively high resilience, self-efficacy, and TRAQ scores, indicating relatively high transition readiness, limiting the generalizability of the study findings. These families have more resources available to them and the barriers and facilitators they identified (e.g., talking to a therapist) might be less accessible to people with fewer resources. Future research should include a more diverse sample with different socio-economic, racial/ethnic, and insurance statuses. Specific attention may be needed to ensure a diverse sample including a more deliberate recruitment strategy, possibly reducing the demands on participants by aligning all of the follow-up study procedures (e.g. photo interviews) with scheduled clinic visits, and perhaps providing additional incentives to participate. Further studies should also explore understanding of the gut-brain axis among patients treated for IBD by community gastroenterologists. Additionally, a majority of participants were in a relatively stable condition at the time of participation; experiences of patients with more active disease may highlight unique barriers and facilitators. Our study demonstrates that photovoice is generally feasible among both patients with IBD and parents. Future studies with a more diverse population would be able to identify barriers to feasibility.

5. Conclusions

These findings, as well as the discussions from the adolescent and parent focus groups, will be used to create a transition intervention protocol in our IBD Center. The focus groups strongly recapitulated the barriers and facilitators described above, particularly acumen regarding the gut-brain axis as an opportunity to enhance the transition experience. Participants felt strongly that they wished to share their photos in the IBD Center; this is a next step. Additionally, they wished to continue engaging with other adolescents and parents, as they found it enriching to participate in this type of dialogue, centered around shared experiences. Finally, given that photovoice is inherently about developing one’s narrative, this method should be evaluated as a therapeutic intervention for use in IBD centers and other clinical settings.