Chronic medical conditions (CMCs) are those that last longer than 6 months and are likely to require medical follow up for more than a year [
47]. Included under this umbrella are conditions such as diabetes, asthma, arthritis, and cancer. Prevalence of CMCs among children and adolescents is increasing and, depending on which conditions are included, prevalence estimates of CMCs in children and adolescents ranges from approximately 10–30% [
25,
63,
65]. Estimates from population-based studies in the United States have found that over 30% of adolescents report one or more chronic conditions [
46,
59]. In addition to placing substantial burden on the healthcare system, CMCs can carry substantial impacts for affected young people and their families. For example, young people with CMCs face many significant impacts on daily functioning, including pain, fatigue, and problems with sleeping patterns, social functioning, family relationships, school and occupational performance [
53].
Youth with CMCs are also at substantially increased risk of mental illness [
16], with population-based studies indicating that children with at least one chronic physical condition are 62% more likely to have a mental illness than those without chronic physical conditions [
58]. A recent study found that 35.3% of young people in the general population have experienced co-occurring mental and physical disorders [
59]. Findings from studies with adults also consistently demonstrate the co-occurrence of mental and physical disorders [
15] and highlight the impact of such comorbidities on quality of life [
5], disease management, and cost of care [
66]. Such findings demonstrate the need to support psychological wellbeing among individuals with CMCs, particularly during adolescence and young adulthood, when individuals undergo multiple transitions [
3] and experience heightened vulnerability to psychological distress [
54].
Systematic reviews of psychological interventions for adolescents and young adults living with CMCs repeatedly highlight the need for accessible and age-appropriate interventions to address distress and promote wellbeing [
51,
52]. Low uptake of existing interventions suggests the need for engaging alternatives that are theoretically sound. Self-compassion-based interventions are one such alternative. Self-compassion is associated with a range of advantageous mental health outcomes among young people [
42], and emerging evidence indicates that interventions that build self-compassion have the potential to substantially improve youth mental health [
8,
9]. Furthermore, several studies have shown an associated between self-compassion and better outcomes in adults with CMCs [
26,
55,
56]. The current paper describes the protocol for a randomised controlled trial of online self-compassion training to promote wellbeing and reduce distress among young Australians with CMCs.
Intervention approach and theoretical basis
The self-compassion intervention is based on the self-regulation model of chronic illness proposed by Lansing and Berg [
38], which highlights the role of cognitive, affective and behavioural regulation in supporting resilience in the face of CMCs. Young people with CMCs are frequently required to deploy self-regulatory resources in order to maintain goal-directed behaviour, such as adhering to treatment regimens in the face of challenges or setbacks (for example, pain, fatigue, and social isolation [
38];). Problematic emotion regulation and the use of maladaptive coping strategies are key drivers of maladjustment and negative psychological outcomes among patients with CMCs [
13]. For example, emotion regulation strategies predict pain and functioning in youth with arthritis [
14], and maladaptive coping strategies such as self-blame and rumination predict depressive symptoms in adolescents with diabetes [
37]. As a result, interventions that promote self-regulation and teach adaptive coping skills have been identified as a priority for young people with CMCs [
52].
Self-compassion is a parsimonious construct for supporting self-regulation across cognitive, emotional and behavioural domains, particularly in the context of chronic illness [
55,
56] and psychiatric vulnerability [
23]. Self-compassion is an adaptive form of relating to oneself in times of difficulty that involves three interconnected capacities: the ability to notice when one is struggling and to respond to difficult experiences in a balanced way; an appreciation of the “common humanity” inherent in challenges and awareness that one is not alone in one’s struggles; and the capacity to be kind and understanding with oneself during times of difficulty [
45]. Self-compassion is a transdiagnostic resilience variable that promotes adaptive psychological and physiological self-regulatory responses to stress [
2,
9,
20], and has been found to buffer the impact of stressful experiences on adolescent and young adult mental health, including traumatic events [
68] and victimization [
33,
34]. A recent meta-analysis found a large effect size for the inverse relationship between self-compassion and psychological distress across 19 studies of youth aged 10–19 [
42].
Self-compassion is associated with less psychopathology and greater quality of life across multiple chronic illness groups, including among patients with cancer [
49], HIV [
10], epilepsy [
12], inflammatory bowel disease (IBD), and arthritis [
55,
56]. By promoting adaptive emotion regulation in the face of difficult experiences [
23], self-compassion may support individuals to cope with the experience of chronic illness, as well as buffering the detrimental impact of self-stigma [
29]. This has been demonstrated in a study of patients with IBD and arthritis, where self-compassion was found to predict adaptive coping, which in turn was associated with enhanced coping efficacy and reductions in perceived stress [
55,
56]. Additionally, self-compassion may play a role in quality of life in individuals with CMCs as it is associated with increased engagement in health-promoting behaviours [
57].
Previous studies of self-compassion training for adults with CMCs have demonstrated positive effects on mental and physical health outcomes. For example, a randomised controlled trial comparing self-compassion training with waitlist control for adults with diabetes found significant improvements in mental health and metabolic outcomes among the intervention group [
26]. In addition, a randomised controlled trial of self-compassion training compared with an active control (relaxation) reported a 40% absolute risk reduction for health status in the intervention group for patients with fibromyalgia [
43]. Further, previous work has found that self-compassion interventions improve mental health and wellbeing among healthy adolescents [
8,
9,
28]. However, in each of these studies, the intervention has been delivered as a face-to-face, group-based intervention (approximately 2 h per week for 6–8 weeks). Arguably, this mode of delivery is not well-suited to many adolescents and young adults with CMCs, who may experience limitations in their capacity to access face-to-face services, as well as already bearing a high time and resource burden for medical treatment. Digital health interventions are an efficacious alternative to face-to-face care for youth mental health [
48], although there is currently only low-quality evidence to support their use among young people with CMCs [
60]. The current trial will examine a brief, online self-compassion training program to improve psychological wellbeing among young people with CMCs. Using a randomized design with a wait-list control, we will provide evidence regarding efficacy, acceptability, and cost-utility. A waitlist control was considered appropriate given that this and exploratory study and we are also interested in testing the feasibility and acceptability of the intervention with the target group. The waitlist control group will access treatment as usual.
Self-Compassion Online (SCO) is a self-guided web-based program grounded in an emotion regulation model of self-compassion [
24]. The program draws on key elements of the mindfulness and acceptance-based model of therapeutic change, including psychoeducation, meditation, and self-reflective exercises [
24]. The SCO program has been piloted with a non-clinical, primarily young adult sample, who reported significant pre-post improvements in depression, stress, emotion regulation, happiness, and self-compassion [
24]. Feedback from the pilot of the program led to revisions in terms of length (from six to 4 weeks) and complexity of content. For the purposes of the current trial, the program was further adapted to make it appropriate for adolescents and to ensure relevance and application to the challenges of living with a CMC. The adapted program was reviewed by members of a Youth Reference Group (YRG) consisting of eight young people (16–25 years) living with a CMC. The YRG provided feedback about each of the four modules in the program, via a combination of online surveys and online consultations. Two online consultations were held; one in which initial feedback was sought, and a second, in which the adaptations made were discussed to ensure alignment with feedback. Based on this feedback, the SCO content and structure were further refined prior to the current trial. An overview of the revised intervention – Self-Compassion Online – Chronic Medical Conditions (SCO-CMC) is shown in Table
1.
Table 1
Self-compassion Online Program Overview
Befriending Yourself | Introduction to self-compassion Understanding the inner critic Understanding relationships between thoughts, feelings, and behaviours Being a friend to yourself |
Calming Your Mind | Three affect regulation systems Anchoring your mind Training your attention (breath-focused meditation) Alternative anchors (five senses practice) Coping with difficult feelings |
Understanding your Strengths | Understanding character strengths Using your strengths Self-acceptance Connecting with others Loving Kindness Practice |
Cultivating a Meaningful Life | Appreciating the good Identifying your values Using your values Values and self-compassion Moving forward |
Aims and hypotheses
The primary aim of this trial is to determine whether SCO-CMC can produce significant improvements in self-compassion, emotion regulation and coping, relative to a waitlist control, among youth with CMCs (16–25 years). In addition, we will investigate whether the intervention is associated with improvements in psychological distress, wellbeing, and quality of life and whether improvements in self-compassion, emotion regulation and coping mediate the effect of the intervention on wellbeing, distress and quality of life. A secondary aim of the study is to determine the cost-utility of the program by calculating the incremental cost-utility ratio for the intervention compared to usual care. Finally, we also aim to examine feasibility of the program, by examining enrolment and retention rates, and determine satisfaction and acceptability of the program by interviewing young people who took part.
It is hypothesized that relative to waitlist control, the SCO-CMC group will:
1)
Report significant increases in self-compassion and approach coping, and significant decreases in emotion regulation difficulties and avoidant coping
2)
Report significant reductions in symptoms of psychological distress
3)
Report significant improvements in quality of life and wellbeing
It is also expected that improvements in self-compassion, emotion regulation, and coping will mediate the relationship between treatment group and reduced psychological distress, as well as improved wellbeing and QoL.