Understanding Contributors of Resilience in Youth With Childhood‐Onset Systemic Lupus Erythematosus Through a Socioecological Lens: A Mixed‐Methods Study

Abstract

Objective

This study aimed to identify themes contributing to resilience in childhood‐onset systemic lupus erythematosus (cSLE), distinguish between profiles of resilience, and examine how they relate to underlying themes and patient characteristics.

Methods

We conducted a mixed‐methods study of 21 patients with cSLE aged 11 to 19 years at a Canadian tertiary care center from October 2022 to July 2024. We purposively sampled patients belonging to ethnically and culturally diverse backgrounds to complete semistructured interviews. We qualitatively defined features of resilience and distinguished profiles of low versus high socioecological resilience according to patient median on the Child and Youth Resilience Measure‐Revised (CYRM‐R). Profiles were then related to sociodemographic (eg, adverse childhood experiences, health literacy), disease features (eg, age at diagnosis, disease duration), and patient‐reported outcomes (eg, anxiety and depressive symptoms).

Results

Factors contributing to resilience were grouped into five themes: familial environment, social support beyond family, health services and information, life with SLE, and sense of self. Cultural influences were reported to impact several themes. Patients with high resilience (scores above 73 on CYRM‐R) reported more facilitators in each thematic area, whereas patients with low resilience experienced more challenges in these areas, in addition to greater number of adverse childhood experiences, lower health literacy, earlier age at diagnosis, longer disease duration and poorer mental health.

Conclusion

Findings support a dynamic model of resilience, shaped by a combination of sociodemographic, disease, personal, cultural and social factors. This improved understanding of resilience may help direct comprehensive care for youth with cSLE and guide targeted interventions for youth at risk of poor outcomes.

INTRODUCTION

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with heterogeneous clinical manifestations. ¹ Childhood‐onset SLE (cSLE), affecting 10% to 20% of all patients with SLE, is characterized by increased disease damage and multiorgan disease activity. ¹

SIGNIFICANCE & INNOVATIONS.

• This study provides a comprehensive exploration of resilience in youth with childhood‐onset systemic lupus erythematosus (cSLE), emphasizing how both socioecological and individual psychological factors interact to influence resilience profiles, disease outcomes, and mental health.

• We provide insight into the unique strengths and challenges of diverse youth with cSLE, which is limited in the current literature.

• Our approach addresses a gap in understanding the complex interplay between individual, family, and cultural dynamics in this population.

• Findings underscore the need for family‐centered approaches, culturally sensitive mental health supports, and self‐management strategies to enhance resilience in youth with cSLE to improve long‐term clinical and psychosocial outcomes.

Resilience measures an individual's ability to effectively overcome adversity. Although increased resilience is associated with improved clinical and mental health outcomes in populations with chronic disease, ² literature about patients with cSLE is scarce. Only a single study has examined individual psychological resilience, ³ that is, an individual's innate mental capacity to overcome adversity. ³ , ⁴ However, it is important to also examine resilience within an individual's environment, defined as socioecological resilience. ⁵ Addressing this is crucial because SLE disproportionately affects marginalized populations. ⁶ Further, socioecological factors (eg, discrimination, income) play a significant role in patient outcomes, such as disease activity and physical functioning. ⁶

The Disability‐Stress‐Coping Model conceptualizes resilience in terms of risk and protective factors contributing to biopsychosocial disease adjustment in pediatric populations. ⁷ Although the model encompasses individual and social factors, better characterization pertaining to cSLE is needed. In addition to the racial and economic disparities observed in patients with cSLE, ⁶ this population is also characterized by a high proportion of adolescents who face unique changes in psychosocial development such as achieving greater autonomy, complexities in maintaining peer relationships, and changes within the family unit. Although the current model strictly characterizes resilience factors as either barriers or facilitators, resilience is a dynamic process rather than a stable trait. ⁸ Thus, better characterization of resilience within youth with cSLE is needed.

Because cSLE primarily affects racially and ethnically marginalized pediatric populations who often face barriers such as limited financial resources, geographic limitations, and language barriers when obtaining health care, a disproportionate impact on biopsychosocial well‐being exists. Because these patient perspectives are scarce in the literature, we purposively sampled from this population to explore the socioecological resilience factors specific to these patients. This study aimed to (1) identify themes contributing to resilience in patients with cSLE, (2) distinguish profiles of low versus high socioecological resilience, (3) relate the profiles to themes of resilience, and (4) relate the profiles to patient characteristics and outcomes.

PATIENTS AND METHODS

Setting and participants

This mixed‐methods study was conducted between October 2022 to July 2024 at The Hospital for Sick Children (SickKids) in Toronto, Canada. Participants were recruited from a larger study examining mental health care disparities in patients with cSLE who met the following inclusion criteria: (1) diagnosis of cSLE according to American College of Rheumatology or Systemic Lupus International Collaborating Clinics classification criteria, ⁹ , ¹⁰ (2) under 19 years old, and (3) ongoing care at the SickKids Lupus Clinic or the SickKids Lupus Neuropsychology service. For this study, additional eligibility criteria were: (1) age of at least 12 years old, and (2) willingness to discuss their mental health experiences. We used purposive sampling, a technique allowing for intentional selection of participants with specific characteristics, to ensure an enriched representation of youth from ethnically diverse backgrounds, reflecting the population with cSLE. This study was approved by the Research Ethics Board at the Hospital for Sick Children (REB #1000078857).

Data collection

Patient characteristics

Resilience levels were collected using self‐report questionnaires during the original study visit. Socioecological resilience was measured using the 17‐Item Child and Youth Resilience Measure‐Revised (CYRM‐R) questionnaire, ⁵ assessing family, peer, and community support factors, with scores ranging from 17 to 85 points. Individual psychological resilience was measured using the 10‐item Connor‐Davidson Resilience Scale (CD‐RISC 10) questionnaire with scores ranging 0 to 40 points. ³ On both measures, higher scores indicate greater resilience.

Sociodemographic characteristics collected via patient self‐report included: age, gender, ethnicity, poverty status, adverse childhood experiences (ACEs), and health literacy. Parental assistance was provided when needed. Patients were asked to report their gender as male, female, or other (option to specify). Ethnicity was based on the census categories for country of family origin used by Statistics Canada, ¹¹ categorized as European (British, French, Northern, Southern, Eastern, and Western European), Asian (East Asian, South Asian, Southeast Asian, West Asian, and Pacific Islander), Arabic, African and Caribbean, American (Indigenous and Latin American), multiethnic (indicating more than one ethnic origin), and other (self‐identified other ethnic origin). Poverty status was determined using the low‐income cut‐offs by Statistics Canada, considering self‐reports of household income level and number of individuals residing in a household. ¹²

ACEs, defined as traumatic or stressful events occurring before 18 years old, were measured using the validated 19‐item Pediatric ACEs and Related Life Events Screener (PEARLs). ¹³ Scores range 0 to 19 points and indicate the number of ACEs exposed to. ¹³ The Health Literacy Assessment Scale for Adolescents (HAS‐A) was used to assess health literacy across three domains; communication (comfort or ability to ask health provider questions), confusion (challenges in understanding health information), and functional (reading and numeracy skills). ¹⁴ On the communication subscale, scores 0 to 14 indicate high communication health literacy, and scores 15 to 20 indicate low communication health literacy. On the confusion subscale, scores 0 to 7 indicate low confusion, and scores 8 to 16 indicate high confusion. On the functional subscale, scores 0 to 11 indicate high functional health literacy, and scores 12 to 24 indicate lower functional health literacy. ¹⁴

Neighborhood‐level marginalization was measured using the 2021 Ontario Marginalization (ON‐Marg) Index. Patient postal codes that were extracted from medical charts were mapped to dissemination areas via the Postal Code Conversion File ¹⁵ in which corresponding marginalization scores were assigned. ¹⁵ Patients were categorized into quintiles from 1 (least marginalized) to 5 (most marginalized) according to the distribution of z‐scores in Ontario. Dimensions evaluated included material resources (assesses community poverty; captures economic opportunities, education, and housing) and racialized and newcomer populations (assesses proportion of recent immigrants and visible minorities; reflects structural racialization and xenophobia). ¹⁶

Disease characteristics collected via medical chart review included: age at diagnosis, disease duration, disease activity, disease damage, and history of major organ involvement. Disease duration was calculated from the diagnosis to the study visit date. Disease activity was measured using the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI‐2K). ¹⁷ Scores range from 0 to 105 points, with higher scores indicating greater disease activity and those greater than or equal to 4 indicating active disease. The Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI) was used to measure irreversible damage across 12 organ systems. ¹⁷ We defined scores greater than 0 at the last study visit indicative of damage. History of major organ involvement was established based on the presence of neuropsychiatric lupus and/or lupus nephritis, diagnosed by the patient's rheumatologist.

Patient‐reported outcomes included depressive and anxiety symptoms, executive functioning, pain interference, and fatigue and were assessed using self‐report questionnaires. The 21‐item Beck Depression Inventory ‐ Second Edition (BDI‐II) evaluates depressive symptoms in individuals aged 13 years and older. ¹⁸ Raw scores were converted to T‐scores (mean = 50 and SD = 10); higher T‐scores indicate more severe depressive symptoms. ¹⁸ Data from one participant under 13 years old who completed the Child Depressive Inventory‐2, were excluded from this analysis. The 41‐item Screen for Child Anxiety Related Emotional Disorders (SCARED) assesses anxiety symptoms in children aged 8 to 18 years. ¹⁹ Scores range from 0 to 82 points, with scores greater than or equal to 25 indicating clinical anxiety. Higher scores indicate more severe symptoms. ¹⁹ Executive functioning was evaluated using the 55‐item Behavior Rating Inventory of Executive Functioning (BRIEF‐2) in children aged 5 to 18 years. ²⁰ Raw scores were converted to T‐scores (mean = 50 and SD = 10); higher scores indicate more frequent executive functioning difficulties. Pain interference and fatigue were measured with the 37‐Item Patient‐Reported Outcomes Measurement Information Systems (PROMIS SF 37). ²¹ Raw scores were transformed into T‐scores (mean = 50 and SD = 10); higher scores indicate greater levels of pain interference and fatigue.

Interviews

Interviews were conducted by a research assistant trained in qualitative interview techniques, using a constructed interview guide (Supplementary File 1) based on Kilbourne's determinants of health disparities model. ²² Before data collection, the interview guide was pilot‐tested to ensure clarity and relevance.

Participants were selected, with an estimated sample size of n = 25 to reach thematic saturation. Saturation was determined to have been reached after 21 interviews, at which point recruitment was stopped. Participants received a gift card for their participation. Interviews occurred virtually (translation services were provided for non‐English speaking participants) and were digitally recorded, transcribed, de‐identified, and entered into NVivo software. ²³

Data analysis

Interview coding for qualitative analysis was completed using a mixed deductive‐inductive approach. An a priori coding system adapted from Wallander and Varni's resilience framework and Kilbourne's determinants of health disparities model was used to identify themes of resilience. ⁷ , ²² During line‐by‐line reading, new codes were generated, evaluated and revised as appropriate. Coding involved at least two coders (among AD, IZ, JL, and LB), and review sessions were conducted to discuss code revisions and discrepancies. Any discrepancies were resolved by consensus with a third reviewer. Themes were derived, and illustrative quotes were extracted from coded text.

Mixed‐methods analysis integrating qualitative and quantitative data was completed using previously published methodology in cSLE qualitative research. ²⁴ Focusing on socioecological resilience, patients were assigned a low or high resilience profile based on the median socioecological resilience (CYRM‐R) score of our sample. We then compared patients in the low versus high resilience profiles by the number of barriers and facilitators for resilience reported in the interview data in each of the identified thematic areas. We also described sociodemographic characteristics, disease characteristics, and patient‐reported outcome measures among both resilience profiles.

RESULTS

Baseline cSLE cohort characteristics

Of 73 eligible patients approached between October 2022‐July 2024 at the SickKids Lupus Clinic, 35 provided informed consent, and 21 participated in the study. Patient characteristics of the cohort with cSLE are presented in Table 1.

Table 1.

Characteristics of the cohort with cSLE^*

Cohort Characteristics	Total Cohort (n = 21) a
Sociodemographic characteristics
Age at study visit, mean ± SD, y	15.2 ± 1.9
Gender, n (%)
Female	17 (81.0)
Male	3 (14.3)
Other, nonbinary	1 (4.8)
Ethnicity, n (%)
African or Caribbean	3 (14.3)
East Asian	5 (23.8)
European	1 (4.8)
Latin American	1 (4.8)
Multiethnic	1 (4.8)
South Asian	5 (23.8)
Southeast Asian	4 (19.0)
Household income below poverty line, n (%)	6 (28.6)
Ontario Marginalization
Material resources score, mean ± SD	0.66 ± 1.2
Highest quintile, n (%)	9 (45.0)
Racialized and newcomer population score, mean ± SD	1.54 ± 0.8
Highest quintile, n (%)	14 (66.7)
ACEs and Related Life Events (PEARLs), mean ± SD	2.4 ± 2.3
Health Literacy (HAS‐A) b
Communication, mean ± SD	15.1 ± 4.4
Low (worse), n (%)	7 (33.3)
High (better), n (%)	14 (66.7)
Confusion, mean ± SD	4.7 ± 3.4
High (worse), n (%)	4 (19.0)
Low (better), n (%)	17 (81.0)
Functional, mean ± SD	7.2 ± 4.3
High (worse), n (%)	4 (19.0)
Low (better), n (%)	17 (81.0)
Disease characteristics
Age at diagnosis in years, mean ± SD	12.5 ± 4.4
Disease duration in years, mean ± SD	2.36 ± 1.9
Disease activity (SLEDAI), mean ± SD	3.9 ± 3.3
Active disease (≥4), n (%)	12 (57.1)
Disease damage (SDI, score >0), n (%)	0 (0.0)
Presence of major organ disease, n (%)	11 (52.4)
Lupus nephritis	9 (42.9)
Neuropsychiatric lupus	1 (4.8)
Both lupus nephritis and neuropsychiatric lupus	1 (4.8)
Resilience levels
Socioecological (CYRM‐R), median (IQR)	73.0 (69.0–78.0)
Individual psychological (CD‐RISC 10), median (IQR)	23.0 (20.0–29.0)
Patient‐reported measures
Depressive symptom (BDI‐II) total T score, mean ± SD	62.5 ± 15.2
Anxiety symptom (SCARED) total score, mean ± SD	26.2 ± 14.5
Clinically elevated anxiety symptoms (scores ≥ 25), n (%)	10 (47.6)
Executive functioning (BRIEF‐2) total score, mean ± SD	57.8 ± 14.1
Pain Interference (PROMIS) total score, mean ± SD	46.2 ± 11.5
Fatigue (PROMIS) total score, mean ± SD	52.1 ± 12.1

^*ACEs, adverse childhood experiences; BDI‐II, Beck Depression Inventory ‐ Second Edition; BRIEF‐2, Behavior Rating Inventory of Executive Functioning; CD‐RISC 10, 10‐item Connor‐Davidson Resilience Scale; cSLE, childhood‐onset systemic lupus erythematosus; CYRM‐R, Child and Youth Resilience Measure‐Revised; HAS‐A, Health Literacy Assessment Scale for Adolescents; IQR, interquartile range; ON‐Marg, Ontario Marginalization index; PEARLs, Pediatric adverse childhood experiences and Related Life Events Screener; PROMIS, Patient‐Reported Outcomes Measurement Information Systems; SCARED, Screen for Child Anxiety Related Emotional Disorders; SDI, Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index; SLEDAI, Systemic Lupus Erythematosus Disease Activity Index.

^a Missing data: ethnicity (n = 1), income (n = 1), ON‐Marg (n = 1), depression (n = 2), anxiety (n = 1), executive function (n = 3), pain interference (n = 4), and fatigue (n = 4).

^b In the HAS‐A communication subscale, higher scores indicate better health literacy and lower scores indicate worse health literacy. On the confusion and functional subscales, higher scores indicate worse health literacy, whereas lower scores indicate better health literacy.

The cohort consisted of 17 (81%) females with an average age of 15.2 ± 1.9 years. The most frequently reported ethnic groups were 23.8% East Asian and 23.8% South Asian. Twenty‐nine percent of the cohort had a household income below the poverty line. For neighborhood‐level marginalization, 45% belonged to the most marginalized quintile for the material resources dimension of the marginalization measure (ON‐Marg), and 67% for the racialized and newcomer dimension. Patients experienced an average of 2.4 ± 2.3 ACEs. Low health literacy was most frequently reported on the communication subscale (33%).

The mean age at diagnosis was 12.5 ± 4.4 years and disease duration was 2.4 ± 1.9 years. Average disease activity was 3.9 ± 3.3 on the SLEDAI‐2K with 57% having active disease. Eleven participants (52%) had a history of major organ disease. No patient had disease damage.

The median socioecological resilience (CYRM‐R) score was 73 (interquartile range [IQR] 69–78). Patients with scores less than 73 were designated as a low resilience profile, whereas scores greater than 73 were designated as a high resilience profile. The median individual psychological resilience (CD‐RISC 10) score was 23 (IQR 20–29).

Average BDI‐II depressive symptoms were 62.5 ± 15.2. Average SCARED anxiety symptoms were 26.2 ± 14.5, with 47.6% of patients exhibiting clinically elevated anxiety symptoms. Mean PROMIS pain interference and fatigue scores were 46.2 ± 11.5) and 52.1 ± 12.1, respectively.

Themes shaping resilience

Five central themes shaping resilience in youth with cSLE emerged. Illustrative quotes are presented in Table 2.

Table 2.

Representative quotes of themes of resilience for youth with cSLE^*

Themes	Barriers to resilience	Facilitators of resilience
Family environment
Family dynamics	“My family, they wouldn't really understand, so I just don't really tell them.”	“Ways I will calm myself down would be like, I'll either talk to my brother, talk to my mom, or my friends.”
	“It's just that they don't like to show their emotions. So when I see my mom cry like what? Is there something wrong happening? Like something very bad?”	“My parents are the ones that keeping track of [my medication], mostly my mom. I'll say my relationship is very, very strong with my parents.”
Cultural influence	“I feel like a lot of Chinese culture [is] like, ‘oh you're not feeling depressed. It's just all in your head.’ I mean, like it is in your head, but it's not like in your head the way that they say it is.”	“If I'm feeling really stressed or overwhelmed, that's when I'll pray […] I think there's something about saying the prayers and chanting it that does feel grounding and safe.”
	“I think sometimes, if I don't agree with what they're saying that's because sometimes I feel that there is a disconnect, and that might be a generational thing, or it might be because they're immigrants.”	“If I'm at the temple, it feels really calm, and it's really a nice safe space.”
Social support beyond the family
Peers	“I also have been bullied multiple times. A student once said at elementary school that that my stretch marks, he called them fish gills and called me a fish and made fun of me.”	“They've been very caring and stuff, like together they made like gift baskets for me. It was very cute.”
	“I have lupus, and when I told like a few classmates about this, one kid coughed in my face because I said, like, oh, I get sick easily because I'm being compromised.”	“Yeah, I think I was actually really lucky because my best friend from high school, she ended up in the same program as me. So, we're in a lot of the same classes together. So, I always have someone by my side for them.”
School	“On the first day of school, I always tell the teachers that there's a chart that they have to know about me because I don't wanna talk to them face to face. But then they never go through the chart.”	“My teachers and my guidance counselor also told me that I have access to more support if I needed it and I just needed to tell them.”
		“I can take frequent breaks if I need extra support with my studies.”
Health service and information
Clinical encounters	“At first, I was upset at my family doctor for almost not diagnosing me because she said that everything was fine, even though I showed her my symptoms and they were really lupus. It was almost obvious I had lupus, but my doctor just didn't acknowledge that.”	“Oh they're really nice people, they explained it really well too… like, what the problem is, what you need to do and stuff.”
	“It's just as a kid I would have liked the reassurance of ‘OK, this is what it is. Here is what's gonna happen.’ Instead of just being like, ‘OK, here's the diagnosis. Here's some medications. Good luck, kiddo.’”	“They're all really nice. And welcoming. So I feel good around them.”
		“I think what they've already told us, when you get older, there will be a bunch of kids the same age as you to tell you about how everything works, and when you become an adult what to do. So, I think that's what reassured me.”
Patient knowledge and preference	“I might explain it to them [the doctors], but they probably won't understand how I'm explaining it [the pain] to them.”	“I just googled common lupus symptoms. I read a book about some of the symptoms to make sure because sometimes you might have it and you don't know you have it.”
	“I haven't told them [how not being able to exercise makes me feel] yet. Because I don't know where to start.”	“And because I've watched them [the doctors] for a year now, I've done a lot of research and I know a lot about lupus and a lot about how rheumatologists see their patients.”
Life with lupus
Current experience	“It was a combination of sadness and anger because I wasn't able to move, get out of bed. I needed both my parents’ support just to go to the bathroom and that, well, at that point I was feeling really, really angry and sad.”	“And I've gotten used to [lupus]. So it doesn't even come to mind most of the time.”
	“It was really hard to do anything because my legs always hurt. And so then I would miss a lot of school. And that would cause me to be stressed because of the amount of work that I miss.”	“As much as it is bad, it's something that, mostly grown‐ups handle. So, as a kid who can handle it, I've learned to take all the benefits out of it. And then that's like all learning.”
		“So, in middle school, I think I just started taking that on as like, I needed to advocate that I have lupus. I'm not gonna be away on these days because of that, and it's not like I'm skipping class or I just don't want to be in class. It's actually for a reasonable reason.”
Anticipation of future	“I just don't want to die. I don't want my kidneys to fail.”	“I do think about that, but I know things will pan out and there will be solutions because I know 10 years ago there weren't as many solutions as now.”
	“Sometimes I think about when I'm older, how often would flare‐ups happen and if they do, how much will I be limited to? What will I be able to do? What won't I be able to do?”	“I'd say for me the reason why I think [lupus] has a more positive effect on my life is because I know I can get through this if I keep doing what I do. You know, taking medication, eating healthy, getting a lot of sleep.”
	“And I'm kind of also scared about when I'm too old for [the pediatric hospital]. I'm scared of my lupus flares up as an adult. I don't know how that would work.”
Sense of self
Personal abilities	“And I really like structure, like I really like. I thrive on routine, so having to reorient myself for university was hard.”	“And I want to continue to do that in the future. I'm in high school, right? I want to do electrical engineering in university as my major. Yeah it's mostly fun—it's not really learning, like it seems more fun.”
		“Yeah. I think like for me, like I really like school. Like, I'm actually very engaged with the stuff I learn with.”
Belonging	“For some teachers, I don't think it's important to vocalize that I have lupus because I don't want to see them to see me as any different.”	“I think with having lupus and the different mental health aspects to it, I've related to kids that are from [Hospital]. I definitely think I relate to them more or I have more of a connection with them because I understand what they went through.”
	“And I have a sore body sometimes or I get exhausted easily compared to others. And seeing that other students around me are not feeling the same way—they can run fine or they're not yawning all the time like I am. That is bothersome to me.”	“I know they can relate, my friends have problems too. My best friend, she has Type 1 diabetes, so she knows what it's like to have a noncommunicable disease like that.”
	“Honestly, I don't know their full‐on life like they have normal lives, not any medical issues that they have, so I still feel different. As well as like parents are worried, like, ‘are you OK? Do you need to rest?’ I'm like, ‘yeah, I'm fine.’”	“My uncle also had to use cortisone for a while, but for something different. And that was actually very helpful. He was literally telling me whatever I was experiencing like he was experiencing exact same thing. That was a shared experience.”
Perception of self	“I don't want to cry in front of them. I don't want them to think I'm weird. Maybe I just care about what other people think. A lot.”	“I don't like that some kids don't have an autoimmune disease like me, but they have some other problems that they suffer with, and they get pretty down from that. So when I hear their experiences with that and how they feel and how they feel down when I compare my mental health and theirs, I'm doing better.”
	“I don't really like talking about my emotions because I've developed some sort of sense that it might be a little bit of a burden.”	“When I'm crying, it's what I go to because, what do I do, just sit there and wallow in self‐pity? No.”

^*cSLE, childhood‐onset systemic lupus erythematosus.

Familial environment

Eleven (52%) patients identified actions by family members that supported their physical well‐being such as parental assistance with treatment adherence. Parents demonstrated initiative in understanding their child's diagnosis by independently seeking information about the disease. Notably, two (10%) patients received guidance from other family members diagnosed with SLE. Ten (48%) patients turned to parents or siblings for emotional support. However, nine (43%) patients reported actions that hindered their well‐being, including seven (33%) who mentioned an inability to discuss their emotional state because of a lack of mental health openness.

Patients were also asked about their family dynamics and home environments. Sixteen (76%) patients highlighted positive aspects including 11 (52%) who reported closeness to parents. Four (19%) patients reported having a good relationship with their siblings. Conversely, 13 (61%) patients mentioned poor familial dynamics including negative relationships, caregiver conflicts, financial burden, and lack of communication. Of these patients, five (23%) reported ACEs such as caregiver mental illness, divorced caregivers, death of a parent, and physical abuse.

Regarding cultural influences, 10 (48%) patients noted benefits from their familial background such as strong cultural values, community belonging, religious coping, and personal growth from their immigration experience. Despite this, 14 (67%) patients reported a lack of mental health awareness, community and religious pressures, and language barriers within the family.

Social support beyond family

Patients were asked about additional social support received. Thirteen (62%) patients reported strong peer relationships, often turning to friends when feeling down. Despite this, ten (48%) participants identified negative aspects of peer relationships. Of these patients, four (19%) experienced a lack of close friendships due to changing schools, the COVID‐19 pandemic, and an inability to discuss their disease. Additionally, two (10%) patients were bullied, with one targeted for SLE symptoms specifically.

Support from educational institutions varied. Twelve (57%) patients reported active implementation of accommodations such as individualized education plans (IEPs), extra breaks, and assignment extensions. Three (14%) patients benefited from caring teachers. However, one patient reported a negative encounter with a teacher who refused to read their IEP.

Health services and information

Fifteen patients (71%) reported positive patient‐clinician relationships, describing interactions as comfortable. Patients endorsed open communication particularly with providers who gave thorough explanations of diagnoses, treatment plans, and transitional care information. These relationships were strengthened by continuous care, with one patient stating: “some of the doctors I've had have gone through major events in my life.” Six (29%) patients valued the mental health referrals and resources provided during clinic visits. Conversely, three (14%) mentioned difficulties in obtaining their diagnosis, citing long wait‐times and feelings of dismissal by providers upon initial symptom presentation. Four (19%) patients reported communication difficulties due to an inability to articulate needs and fears of misunderstandings.

Although patients initially had a limited understanding of their diagnosis, four (19%) reported seeking information from external sources to gain further information on disease management, which served to manage expectations. However, one patient reported that searching for SLE information caused fear of disease complications rather than reassurance.

Life with SLE

Seventeen (81%) patients reported physical symptoms of SLE, including pain, swelling, and medication side effects. Patients reported limitations on functioning such as fatigue, distractibility, inability to participate in sports, and difficulties walking and writing. One participant noted that managing their symptoms “feels like a nuisance.” Despite this, nine (43%) patients exhibited personal growth from their experience. Among them, six (29%) patients described benefiting from self‐management strategies regarding medication adherence, anti‐inflammatory diets, and sun sensitivity. Patients also mentioned developing increased self‐competence and knowledge from their experience with SLE, with one inspired to pursue a career in rheumatology.

Eleven (52%) patients anticipated negative outcomes related to their future including increased symptoms, limitations on educational and professional development, apprehension about transition to adult care and fears of death. However, six patients (29%) expressed a positive outlook, expecting minimal impacts through consistent disease management, and remaining hopeful of medical advancements.

Sense of self

Thirteen patients (62%) reported possessing positive personal attributes and qualities associated with their sense of confidence. Among these patients, eight (38%) discussed career aspirations and goal‐setting behaviors, and three (14%) emphasized dedication to academic studies.

Seven (33%) youth described feelings of nonbelonging, such as feeling different than healthy peers. Four (19%) described feelings of resentment toward their friends, with one patient stating, “people my age don't have to worry about their body as much.” Patients also described feeling left out from activities, reinforcing their perception of not being normal. Many voiced not disclosing their condition to friends and teachers, with one stating “I don't want them to see me as different.” This contrasts the ten (48%) youth who stated feeling they could relate to others, such as peers with chronic illness and classmates also requiring accommodations. Ten patients (48%) reported feeling burdensome, concerned about putting strain on others. Two patients (10%) feared judgment from others stating, “I think it might make me an attention‐seeker.” Nine patients (43%) had a positive self‐perception, describing enjoying feelings of achievement and helping others.

Resilience profiles: relationship of themes and patient characteristics

Participants with both high and low resilience differed in the number of barriers and facilitators experienced per thematic area, shown in Figure 1 and Table 3. Although youth with high resilience also experienced barriers, they consistently reported a greater number of facilitators in each theme, with the exception of familial environment. In both groups, barriers were most frequently reported in life with SLE. Youth with low resilience next frequently reported challenges in familial environment, and sense of self. Youth with high resilience most frequently reported facilitators in life with SLE, familial environment, and sense of self.

Figure 1.

Individual patient profiles of socioecological resilience: distribution of qualitative themes for barriers and facilitators across the spectrum of resilience scores. Individual patient profiles (each represented by a horizontal bar, n = 21) are plotted according to their socioecological resilience scores as measured by the CYRM‐R scale. Each patient profile shows the number of barriers (negative numbers) and facilitators (positive numbers) of resilience as reported in qualitative interviews, color‐coded by theme. The cohort is grouped according to low versus high socioecological resilience on the CYRM‐R measure. Patients with resilience scores at or below the median score of 73 (indicated by dotted line) were attributed a low resilience profile, and patients with scores higher than 73 were attributed a high resilience profile. CYRM‐R, Child and Youth Resilience Measure‐Revised; SLE, systemic lupus erythematosus.

Table 3.

Barriers and facilitators per theme across resilience profiles^*

Themes	Number of reported barriers (n = 216)		Number of reported facilitators (n = 222)
	High resilience, n (%)	Low resilience, n (%)	High resilience, n (%)	Low resilience, n (%)
Life with SLE	34 (17)	54 (25)	38 (17)	24 (11)
Familial environment	24 (11)	32 (15)	22 (10)	27 (12)
Sense of self	18 (8)	18 (8)	23 (10)	24 (11)
Health services and information	5 (2)	17 (8)	14 (6)	22 (10)
Social support beyond family	8 (4)	6 (3)	10 (5)	18 (8)

^*Shown are the number of barriers and facilitators to resilience per theme and resilience profile in order of most reported. SLE, systemic lupus erythematosus.

Different patterns of patient characteristics emerged between resilience profiles, as demonstrated in Table 4. Poverty levels were similar across groups. Compared with their high resilience counterparts, patients with low resilience had a greater number of ACEs, lower health literacy communication, younger age at diagnosis, longer disease duration, and higher depressive and anxiety symptoms.

Table 4.

Differences in characteristics between youth with cSLE with low versus high resilience^*

Characteristics	Low resilience (n = 11) a	High resilience (n = 10) b
Sociodemographic characteristics
Age at study visit, mean ± SD y	15.2 ± 1.9	15.2 ± 2.0
Gender, n (%)
Female	7 (63.6)	10 (100.0)
Male	3 (27.3)	0 (0.0)
Other, nonbinary	1 (9.1)	0 (0.0)
Ethnicity, n (%)
African or Caribbean	0 (0.0)	3 (30.0)
East Asian	4 (36.4)	1 (10.0)
European	1 (9.1)	0 (0.0)
Latin American	1 (9.1)	0 (0.0)
Multiethnic	0 (0.0)	1 (10.0)
South Asian	2 (18.2)	3 (30.0)
Southeast Asian	3 (27.4)	1 (10.0)
Household income below poverty line, n (%)	3 (27.3)	3 (30.0)
Ontario Marginalization
Material resources score, mean ± SD	0.57 ± 1.1	0.8 ± 1.4
Highest quintile, n (%)	4 (40.0)	5 (50.0)
Racialized and newcomer population score, mean ± SD	1.5 ± 0.8	1.57 ± 0.9
Highest quintile, n (%)	7 (70.0)	7 (70.0)
ACEs and related life experiences (PEARLs), mean ± SD	3.2 ± 2.6	1.6 ± 1.8
With ACEs (score >0), n (%)	10 (91.0)	6 (60.0)
HAS‐A scores c
Communication, mean ± SD	13.3 ± 5.0	17.1 ± 2.7
Low (worse), n (%)	5 (45.5)	2 (20.0)
High (better), n (%)	6 (54.5)	8 (80.0)
Confusion, mean ± SD	5.2 ± 1.9	4.1 ± 4.6
High (worse), n (%)	2 (18.2)	2 (20.0)
Low (better), n (%)	9 (81.8)	8 (80.0)
Functional, mean ± SD	8.6 ± 2.9	5.7 ± 5.1
High (worse), n (%)	2 (18.2)	2 (20.0)
Low (better), n (%)	9 (81.8)	8 (80.0)
Disease characteristics
Age at diagnosis, mean ± SD y	11.7 ± 4.7	13.4 ± 4.0
Disease duration, mean ± SD y	2.9 ± 2.0	1.8 ± 1.6
Disease activity (SLEDAI), mean ± SD	3.8 ± 3.4	3.9 ± 3.3
Active disease (≥4), n (%)	6 (54.5)	6 (60.0)
Disease damage (SDI) (Score >0), n (%)	0 (0.0)	0 (0.0)
Presence of major organ disease, n (%)	5 (45.5)	6 (60.0)
Lupus nephritis	4 (36.4)	5 (50.0)
Neuropsychiatric lupus	0 (0.0)	1 (10.0)
Both lupus nephritis and neuropsychiatric lupus	1 (9.1)	0 (0.0)
Resilience levels
Individual psychological (CD‐RISC 10), median (IQR)	20.0 (15.0–25.0)	29.0 (23.0–33.0)
Patient‐reported measures
Depressive symptom (BDI‐II) total T score, mean ± SD	68 ± 16.7	55 ± 9.3
Anxiety symptom (SCARED) total score, mean ± SD	25.5 ± 15.0	26.9 ± 14.6
Clinically elevated anxiety symptoms (scores ≥ 25), n (%)	7 (63.6)	3 (30.0)
Executive functioning (BRIEF‐2) total score, mean ± SD	60.0 ± 17.3	55.1 ± 9.5
Pain Interference (PROMIS) total score, mean ± SD	45.3 ± 10.1	47.2 ± 13.5
Fatigue (PROMIS) total score, mean ± SD	54.3 ± 11.0	49.8 ± 13.7

^*ACEs, adverse childhood experiences; BDI‐II, Beck Depression Inventory ‐ Second Edition; BRIEF‐2, Behavior Rating Inventory of Executive Functioning; CD‐RISC 10, 10‐item Connor‐Davidson Resilience Scale; cSLE, childhood‐onset systemic lupus erythematosus; CYRM‐R, Child and Youth Resilience Measure‐Revised; HAS‐A, Health Literacy Assessment Scale for Adolescents; IQR, interquartile range; ON‐Marg, Ontario Marginalization Index; PEARLs, Pediatric adverse childhood experiences and Related Life Events Screener; PROMIS, Patient‐Reported Outcomes Measurement Information Systems; SCARED, Screen for Child Anxiety Related Emotional Disorders; SDI, Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index; SLEDAI, Systemic Lupus Erythematosus Disease Activity Index.

^a Missing low: ON‐Marg (n = 1), executive function (n = 1), pain interference (n = 2), and fatigue (n = 2).

^b Missing high: ethnicity (n = 1), income (n = 1), depression (n = 2), anxiety (n = 1), executive function (n = 2), pain interference (n =2), fatigue (n = 2).

^c In the HAS‐A communication subscale, higher scores indicate better health literacy, and lower scores indicate worse health literacy. On the confusion and functional subscales, higher scores indicate worse health literacy, whereas lower scores indicate better health literacy.

Integrating both our quantitative findings and qualitative themes and subthemes, we propose a model in which various socioecological and individual psychological factors contribute to resilience in youth with cSLE, ultimately shaping disease and mental health outcomes (Figure 2).

Figure 2.

A dynamic model of resilience in youth with childhood‐onset systemic lupus erythematosus (cSLE). The model proposes factors influencing resilience in patients with cSLE. Socioecological factors are represented in blue (family, peers and school, health care, culture) and individual psychological factors are represented in green (intrapersonal attributes). Each factor plays the role of either a barrier or facilitator depending on the circumstance (whether the factor is positive or negative). These factors are associated with the development of a low or high resilience profile. The bidirectional nature of the model proposes that although resilience may vary as changes in socioecological and individual psychological resilience factors occur, thereby altering disease and mental health outcomes, these factors may also play a role in mediating resilience. Color figure can be viewed in the online issue, which is available at http://onlinelibrary.wiley.com/doi/10.1002/acr.25550/abstract.

DISCUSSION

This mixed‐methods study explored resilience across individual and socioecological domains in patients with cSLE, identifying five themes: familial environment, social support beyond family, health services and information, life with SLE, and sense of self. Patients with higher resilience reported more facilitators in areas such as life with SLE, sense of self, and social support beyond the family, despite also encountering barriers. They had fewer ACEs, better health literacy, and lower levels of depressive and anxiety symptoms compared with their low resilience counterparts. In contrast, those with low resilience most frequently reported barriers in life with SLE, familial environment, and sense of self. They experienced more ACEs, lower health literacy, earlier diagnosis, longer disease duration, and poorer mental health. These findings underscore the influence of biopsychosocial factors influencing resilience in youth with cSLE and their subsequent impact on patient outcomes.

Resilience levels in our cohort were similar to those of adolescents with chronic musculoskeletal pain, with both groups exhibiting lower resilience than adolescents with Type 1 diabetes, inflammatory bowel disease, and cancer. These findings may be explained by socioecological challenges experienced by both groups. ²⁵ Additionally, the mental health of our cohort is comparable with that of most cohorts with cSLE and other pediatric rheumatology patients, with 20% to 40% experiencing depression and anxiety symptoms. ²⁶

Half of our cohort reported receiving assistance from family members for both disease‐related and emotional challenges. Children with cSLE often experience feelings of isolation due to their illness. However, such feelings tend to be lower among patients whose caregivers demonstrate an understanding of their child's disease. ²⁷ Given the lack of cSLE awareness, a better understanding of parental health literacy is warranted. Further, strategies to improve caregiver health literacy are crucial because of the potential influence on patient clinical outcomes, as well as psychosocial well‐being.

The influence of general family dynamics as a mediator of resilience was explored. Although some patients in our cohort reported having caring family members, others described financial strain, a lack of communication and conflict. These factors are quantitatively reflected in our cohort, with 42% of patients in the highest quintile of the marginalization measure (ON‐Marg) material resource dimensions. Such environments heighten the risk of poor parent‐adolescent relationships and low emotional support. ²⁸ Further, ACEs reported in our cohort frequently involved the family unit. Considering the buffering role positive familial relationships play in mediating resilience, interventions aiming to strengthen familial relationships could enhance patient resilience.

Because we purposively selected patients from racially‐marginalized populations, we explored cultural contributors to resilience. Although few patients described distressing immigration experiences, they subsequently reported personal growth and strengthened family ties. Additionally, half our cohort endorsed strong cultural values and community connections‐factors associated with increased resilience in immigrant populations. ²⁹ Further, patients reported using religion as a coping strategy, mirroring findings in which spiritual practices were associated with improved mental health in racialized adolescents and adult chronic illness populations. ³⁰ , ³¹

However, some patients linked their cultural background to a lack of mental health discussion. Open communication about emotional health is essential for fostering supportive environments. However, in communities where mental health is stigmatized, patients may not receive adequate support. Because poor mental health negatively impacts treatment adherence and disease management, ³² access to culturally sensitive supports and self‐care practices remains crucial in enhancing quality of life for patients with cSLE.

Many youths emphasized the importance of peers as a facilitator of resilience, echoing findings from a juvenile idiopathic cohort linking strong peer relationships with high resilience. ⁴ As adolescents shift focus from family to peers, strong peer relationships are vital for fostering resilience and mitigating familial strain. ³³

Patients reported mixed experiences with receiving school supports. Cognitive difficulties and physical limitations were reported to impact academic and extracurricular involvement. In a previous qualitative study, caregivers endorsed the need for increased cSLE awareness at school, to reduce related challenges. ³⁴ School advocacy may improve educational environments by ensuring proper accommodation implementation and enhancing communication, consequently reducing stigma.

When encountering health care providers, many patients reported strong clinician relationships, emphasizing the role of good rapport in fostering resilience. Motivational interviewing techniques, such as empathetic listening and open‐ended questioning may help establish trust and communication. ³⁵ This is especially important for patients with cSLE because manifestations can mimic those of nonchronic conditions, leading patients to misinterpret or ignore symptoms. Our study underscores the need for better provider education to improve diagnosis and identification, ultimately reducing health care usage and disease flares. ³⁶

Disease manifestations may also be a contributor to varied resilience. Research indicates patients with SLE experience low health‐related quality of life in physical, social, and psychological domains. ³⁷ Although most patients reported physical challenges and functional limitations, others did not. Because SLE is heterogenous, such findings may be attributed to variations in disease manifestation, progression and management.

Many patients expect SLE to negatively impact their future. Although disease progression is unpredictable, this appraisal may foster learned helplessness and anxiety. In contrast, some patients perceived positive changes from adversity, viewing SLE as an opportunity to learn, pursue medical careers, and help others in need. In patients with adult SLE, benefit‐finding is associated with better physical and emotional well‐being, fostering optimism and improving psychosocial adjustment. ³⁸ , ³⁹

Patients reported actively engaging in disease self‐management, aligning with the concept of self‐efficacy. In health contexts, self‐efficacy reflects a patient's confidence in managing health behaviors and ability to make positive health changes. ⁴⁰ In adult SLE, low self‐efficacy is linked to organ damage, poor medication adherence, and lower self‐care motivation. ⁴¹ , ⁴² Thus, enhancing self‐efficacy may improve disease management. Contrasting adult populations, evidenced both in past literature and our findings, pediatric disease self‐management is often shared between youth and caregivers. ⁴³ Therefore, it is important for clinicians to foster a family‐centered approach to care, with the goal of promoting competence and autonomy to youth when approaching transition to adult health care.

Many youths still reported feeling different compared with their healthy peers. Adolescence is a critical period of personal development, and cSLE may add further challenges in maintaining acceptance by peers. ⁴⁴ Interventions such as camps bringing together youth with cSLE have been found to improve patient resilience by fostering belonging. ²⁷ In contrast, some patients expressed confidence in their abilities, showing ambition in their goals and satisfaction in their achievements. Strengthening self‐esteem may enhance resilience in youth with SLE. ⁴⁵

Our findings link low resilience profiles with patient characteristics such as higher number of ACEs, lower health literacy, and younger age at diagnosis. Poverty levels did not significantly differ across resilience groups, an unexpected finding given the well‐established link between socioeconomic adversity and poorer health outcomes. ⁶ However, this may highlight the importance of our newly identified protective effects, such as self‐efficacy and social support, in buffering the effects of poverty. These results highlight the need for targeted screening and efficacious resource allocation to support youth at risk for low resilience, aiding their biopsychosocial adjustment to illness.

Findings support fostering resilience to better mental health, which is associated with improved medication adherence, and more successful transition to adult care. ⁴⁶ , ⁴⁷ , ⁴⁸ Therefore, resilience‐based interventions may be crucial for improving mental health outcomes and managing cSLE. Such interventions, proven feasible and acceptable, reducing depression and anxiety in patients with cancer, cystic fibrosis, and diabetes, ⁴⁹ may similarly enhance the well‐being of patients with cSLE. Given the dynamic nature of resilience, an individualized approach is needed. Beyond current intervention components like stress management, goal‐setting, and meaning making, ⁴⁹ our findings suggest strengthening familial support, school advocacy, and improving patient‐provider interactions can help overcome the barriers faced by youth with cSLE to improve patient well‐being.

Our study has limitations. The small sample size may limit the generalizability of our findings. Although our cohort reflects a typical lupus population, the predominance of female participants and exclusive use of English interviews may limit generalizability to male patients and those with language barriers. Additionally, the cross‐sectional design prevented us from evaluating resilience over time or comparing resilience factors with healthy peers.

Our study has several strengths. It advances the limited research on resilience in patients with cSLE. By purposively sampling racially‐marginalized patients, we highlight important socioecological factors specific to these groups, offering unique insights into their experiences. Additionally, interviews provided an in‐depth understanding of patient experiences that may not be captured by other data collection methods.

In conclusion, this study adds valuable insights to the limited research conducted on resilience in patients with cSLE, investigating barriers and facilitators specific to underrepresented populations. Our findings highlight the importance of considering socioecological factors to better characterize resilience in patients with cSLE. Future studies should aim to explore such factors on a longitudinal scale to better understand how factors may affect resilience over time.

AUTHOR CONTRIBUTIONS

All authors contributed to at least one of the following manuscript preparation roles: conceptualization AND/OR methodology, software, investigation, formal analysis, data curation, visualization, and validation AND drafting or reviewing/editing the final draft. As corresponding author, Dr Knight confirms that all authors have provided the final approval of the version to be published and takes responsibility for the affirmations regarding article submission (eg, not under consideration by another journal), the integrity of the data presented, and the statements regarding compliance with institutional review board/Declaration of Helsinki requirements.

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