Trial Report Web-Based Self-Compassion Training to Improve the Well-Being of Youth With Chronic Medical Conditions: Randomized Controlled Trial, 2023, Finlay-Jones

[Dolphin]

Free:
https://www.jmir.org/2023/1/e44016/

Finlay-Jones AL, Parkinson A, Sirois F, Perry Y, Boyes M, Rees CS
Web-Based Self-Compassion Training to Improve the Well-Being of Youth With Chronic Medical Conditions: Randomized Controlled Trial
J Med Internet Res 2023;25:e44016
doi: 10.2196/44016PMID: 37703081

Abstract
Background:Up to one-third of young people live with chronic physical conditions (eg, diabetes, asthma, and autoimmune disease) that frequently involve recurrent pain, fatigue, activity limitations, stigma, and isolation. These issues may be exacerbated as young people transition through adolescence. Accordingly, young people with chronic illness are at a high risk of psychological distress. Accessible, evidence-based interventions for young people with chronic illnesses are urgently needed to improve well-being, support adaptation, and enhance daily functioning. Self-compassion, which is an adaptive means of relating to oneself during times of difficulty, is a promising intervention target for this population.

Objective:This study aims to test the efficacy of a 4-week, self-guided, web-based self-compassion training program for improving well-being among young Australians (aged 16-25 years) living with a chronic medical condition. The primary outcomes were self-compassion, emotion regulation difficulties, and coping; the secondary outcomes were well-being, distress, and quality of life. We also sought to test whether changes in primary outcomes mediated changes in secondary outcomes and gather feedback about the strengths and limitations of the program.

Methods:We conducted a single-blind, parallel-group, randomized controlled trial comparing a 4-week, fully automated, web-based self-compassion training program with a waitlist control. Participants were recruited via the internet, and outcomes were self-assessed at 4 (T1) and 12 weeks (T2) after the baseline time point via a web-based survey. A mixed methods approach was used to evaluate the program feedback.

Results:Overall, 151 patients (age: mean 21.15, SD 2.77 years; female patients: n=132, 87.4%) were randomized to the intervention (n=76, 50.3%) and control (n=75, 49.7%) groups. The loss–to–follow-up rate was 47.4%, and program use statistics indicated that only 29% (22/76) of young people in the experimental group completed 100% of the program. The main reported barrier to completion was a lack of time. As anticipated, treatment effects were observed for self-compassion (P=.01; partial η2=0.05; small effect); well-being (P≤.001; partial η2=0.07; medium effect); and distress (P=.003; partial η2=0.054; small-medium effect) at the posttest time point and maintained at follow-up. Contrary to our hypotheses, no intervention effects were observed for emotion regulation difficulties or maladaptive coping strategies. Improvements in adaptive coping were observed at the posttest time point but were not maintained at follow-up. Self-compassion, but not emotion regulation difficulties or coping, mediated the improvements in well-being.

Conclusions:Minimal-contact, web-based self-compassion training can confer mental health benefits on young people with chronic conditions. This group experiences substantial challenges to participation in mental health supports, and program engagement and retention in this trial were suboptimal. Future work should focus on refining the program content, engagement, and delivery to optimize engagement and treatment outcomes for the target group.

Trial Registration:Australian New Zealand Clinical Trials Registry 12619000572167; https://tinyurl.com/5n6hevt

International Registered Report Identifier (IRRID):RR2-10.1186/s12889-020-8226-7

[..]

"Participants were recruited on the internet through open-access websites of community organizations that represent various chronic conditions including epilepsy, diabetes, asthma, cystic fibrosis, and myalgic encephalomyelitis or chronic fatigue syndrome."

 

[RedFox]

Could be useful if effective but would be very difficult to prove any effect.

 

[Hutan]

Yes, the idea of this isn't terrible. But even the gender ratio of participants points to a problem - 87.4% female. While females may perhaps be more likely to have a chronic health condition, I think that ratio suggests that males are a lot less likely to sign up for 'self-compassion training'.

And then the drop out rate was horrendous.

The loss–to–follow-up rate was 47.4%, and program use statistics indicated that only 29% (22/76) of young people in the experimental group completed 100% of the program.

Only 29% of people who volunteered for this program (that is, who saw it on the internet and thought it would be a good thing to do) completed it. Clearly, most young people with chronic conditions did not find either the idea or the reality of the programme useful.

Given all of that, and the small reported benefits in an open label trial with subjective outcomes and a waitlist control, it is not reasonable to conclude

Minimal-contact, web-based self-compassion training can confer mental health benefits on young people with chronic conditions.

While the rest of the conclusion is probably mostly right

This group experiences substantial challenges to participation in mental health supports, and program engagement and retention in this trial were suboptimal. Future work should focus on refining the program content, engagement, and delivery to optimize engagement and treatment outcomes for the target group.

I think 'refining the program content' is not what is needed here. The approach needs a fundamental rethink. They probably need to think about the power of being in a supportive group all experiencing similar things; surely group-based approaches, even if just online, are likely to be more useful than individually going through a web-based training program? I think approaches that build communities are likely to be more attractive and useful. Some individuals might do well if given opportunities to help others, in advocacy, for example in annual camps. Some might build useful relationships with others with chronic conditions by being part of an online gaming league...? I don't know. But, I think this study shows that "a 4-week, self-guided, web-based self-compassion training program" or anything that looks very much like that won't be the answer for meeting the need the researchers have identified.

Personally, I'd like to instead see more research into how to train GPs to work more compassionately with young people with these chronic conditions. I know that some are fine, but I have seen GPs diminishing the self-compassion of young people with chronic conditions. Many of the BPS programmes are highly effective in replacing self-compassion with self-blame.

 

[Ash]

Personally, I'd like to instead see more research into how to train GPs to work more compassionately with young people with these chronic conditions. I know that some are fine, but I have seen GPs diminishing the self-compassion of young people with chronic conditions. Many of the BPS programmes are highly effective in replacing self-compassion with self-blame.

Excellent full analysis. Yes to community relationships.
I especially appreciated your final thought though.