Compassion by Design with Emerging Adults: Addressing Psychosocial Gaps & Chronic Health Challenges Through Co-Produced Theory and Digital Interventions

Background: Childhood-onset chronic physical illnesses are common, with global prevalence rates between 13-30% in youth, with 30-60% prevalence of mental illness comorbidity. Gaps and inequities are growing for this group, whose negative psychosocial functioning and quality of life outcomes have been consistently noted for decades. Youth with childhood onset physical conditions often report transdiagnostic vulnerability factors including high levels of shame, self-blame, self-criticism, and low-self compassion. As an intervention, compassion has demonstrated mitigation of these factors, further catalyzing adversity into positive growth, promoting health and quality of life, and reducing future mental health risks across the lifespan.

 

Because the developmental phase of emerging adulthood (age 15-29) is critical for developing lifelong health capabilities, we started in 2017 a 7-year long partnership with youth with lived experience of chronic illness to explore compassion-based interventions attending to context and mechanisms of 'what works, how, why, for whom, in what circumstances’.

 

Approach: This longitudinal research offers scalable insights for emerging adult mental healthcare via realist, ethnographic, and participatory approaches. First, with 147 key informants (youth, families, health providers, researchers, designers, contemplative practitioners) we refined compassion-based theory to inform design and implementation of a psychosocial VR intervention for later phases.

 

An initial priority setting activity determined that contextually-informed digital interventions for psychosocial support in youths’ home communities was prioritized: youth were enthusiastic about virtual reality and compassion-based principles; conversely, they rejected disease self-management and Cognitive Behavioural Therapy.

 

Results: Theory refinement and testing revealed patterned inequities in accessing compassion across illness types and gender: visible or medically recognised conditions were met with validation of suffering, while stigmatised/invisible conditions met invalidation, dismissiveness, or “conditional compassion” contingent on compliance or concealment of suffering, especially among girls/women and gender minorities. These are linked to recognition regimes - patterned social logics determining whose suffering is seen as ‘legitimate’ or ‘deserving’ of compassion. These recognition regimes shaped mechanisms: validation cultivated emotional safety, self-compassion and trust; invalidation or conditional compassion produced shame, distrust and threat activation (protective anger, vigilance, avoidance), making compassion feel unsafe and limiting the ability to receive or give it. To redress this, technology can provide a ‘soft entry’: virtual reality and embodied peer-to-peer virtual environments can operationalise compassion as promotive (early skill-building) and reparative (attachment) practices, offering relational, engaging, and developmentally congruent contexts for transfer to daily life.

 

Implications: Individual self-compassion training alone is inadequate without system conditions enabling non-contingent, relationship-based compassion across families, peers, schools and services. For instance, while compassion is widely cited as a value in integrated care, it is rarely operationalised, structurally enabled, and assessed. We propose compassion as a relational, health-equity mechanism for integrated care: a shared value translated into testable mechanisms, design requirements and health and social practice norms.

 

We introduce the Compassion by Design framework to embed these mechanisms across micro–meso–macro levels, aligning prevention and technology with lived-experience priorities. This reframing moves towards implementable compassion, reducing inequities linked to wider social recognition regimes, strengthening prevention, and improving psychosocial outcomes for young people with chronic conditions.