ArticlePalliative medicine2026
Barriers and enablers to community living: A mixed-methods systems study of young adults with life-limiting conditions.
Article in Palliative medicine, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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4 authors.
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Abstract
backgroundAdults aged 18-64 years with life-limiting conditions often fall through gaps in health and disability systems, particularly due to service ineligibility. Although home-based palliative care improves outcomes and cost-effectiveness, structural inequities and fragmented services can prevent younger adults from remaining in the community.
aimTo identify factors influencing the ability of younger adults with life-limiting conditions to remain in the community and to map how these factors interact - using Australia as an illustrative context - through a systems-thinking approach.
designMixed-methods study combining retrospective case-note analysis and semi-structured interviews. Thematic coding informed a causal loop diagram visualizing system dynamics and leverage points. SETTING/
participantsSixty-three younger adults connected to a national care-coordination program supporting those at risk of residential aged-care entry due to ineligibility for disability or aged-care funding. Data comprised 48 case notes and 15 interviews across all Australian jurisdictions.
resultsFive interdependent domains influenced community living: informal care, formal care, service navigation, respite access, and condition severity. The causal loop diagram revealed three reinforcing and two balancing loops. Key leverage points included respite access, carer wellbeing, and streamlined navigation and eligibility processes.
conclusionsSystems thinking clarified how interactions among informal care, formal supports, and symptom severity shape care continuity. Findings highlight the need to position respite, practical carer support and navigation assistance as core components of community-based palliative care, and to align disability, aged-care and palliative-care systems so younger adults are not excluded from essential support due to age or funding rules.
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