Effect of a Person-Centred Care Intervention for Families Providing Home-Based Care to a Person With Advanced Chronic Illness: A Pilot Randomised Controlled Trial

BACKGROUND:

More than 4.4 million decedents in Europe experience serious health-related suffering and require palliative care, a number projected to grow globally (Arias-Casais et al., 2019). Although hospital deaths still predominate, deaths at home are steadily increasing (Morris et al., 2015). Importantly, many hospital deaths occur contrary to patients' preferences, as most people would prefer to die at home supported by family (Ali et al., 2019; Gomes et al., 2013; Higginson et al., 2017). In parallel, home-based end-of-life care has expanded in recent years (Arias-Casais et al., 2020; Kjellstadli et al., 2018; Nilsson et al., 2017).

The feasibility of remaining at home near the end of life depends largely on families' capacity to assume caregiving responsibilities (Dowd et al., 2023; Martín-Martín et al., 2022). Family members typically provide most physical and emotional care, symptom management, and service coordination, effectively becoming the backbone of home end-of-life care and delivering ~80% of care for patients with advanced illness at home (Zavagli et al., 2019; Stajduhar, 2013; Martín-Martín et al., 2016; Morris et al., 2015). While home care can foster autonomy, freedom, and meaning (Collier et al., 2015; Akpan-Idiok & Anarado, 2014), it also imposes substantial physical, psychological, and emotional strain on families, who frequently feel unprepared and lack confidence for these roles (Martín-Martín et al., 2016; Mason & Hodgkin, 2019; Soroka et al., 2018).

Health professionals play a crucial role in enabling families to provide sustainable home care in line with preferences for place of care and death (Ewing et al., 2018; Hardy, 2018). Yet family-centred practice often remains aspirational: many services still focus primarily on the patient, and professionals may be unsure how to engage families effectively (Ellington et al., 2018; Lees et al., 2014). Moreover, most research to date has emphasized the individual "primary caregiver," overlooking the broader family unit despite evidence that advanced illness constitutes a family-level crisis requiring collective adjustment during dying and into bereavement (Steele & Davies, 2015; Martín-Martín et al., 2022, 2025; Mehta et al., 2009).

Person-Centred Care (PCC) offers a coherent response. Major organizations-including WHO and the National Academy of Medicine-call for systems that centre the person (and family) rather than the disease (OMS, 2017; Pronovost et al., 2018). Spanish and regional initiatives have similarly promoted person- and family-centred practice and humanization of care (Asociación Profesional de Enfermeras de Ontario, 2015; Departamento de Salud, 2018). PCC, particularly the University of Gothenburg Centre for Person-Centred Care (GPCC) model, organizes care around narratives, shared goals, partnership, and co-creation of a health plan (Ekman et al., 2011; Britten et al., 2020). This approach reframes families as active partners with resources and capabilities, enhancing self-efficacy and participation in decision-making and care planning (Dewing et al., 2021; Barr & Tsai, 2021). Prior frameworks emphasize relational processes and contexts (McCormack & McCance, 2006; Leplège et al., 2007).