Medical innovations and advancements have significantly prolonged life for people with advanced illnesses. However, living with advanced illness entails dealing with multiple personal, structural, and contextual circumstances that interact to impact physical, social, emotional, and spiritual well-being. From existing literature, we sought to understand experiences and perceptions of social connectedness, social identity, and associated influences among adults living with advanced illness.

 

Methods

This was a systematic review following the Preferred Reporting Items for Systematic Review guidance (PRISMA). We conducted searches in MEDLINE, PsycINFO, CINAHL, EMBASE, and Social Sciences Citation Index (Web of Science) databases. We applied a meta-ethnography approach to synthesise data.

Findings

Of 2304 papers, 20 met inclusion criteria. This synthesised evidence showed: 1) close personal relationships and engagement in social activities are highly valued in advanced illness, despite complex challenges and devastating circumstances; 2) close relationships are helpful in navigating vulnerabilities of declining physical functioning, enhance sense of purpose, and improve quality of life; and 3) participation in social activities helps maintain a sense of normalcy and social identity. Intersecting factors that promote or threaten social relationships and activities in advanced illness include: labelling the person as ‘patient’, age, stage of illness and associated symptoms, availability of social networks during and before illness, place of residence, ability to adapt, and socioeconomic status.

Conclusion and Recommendations

Maintaining social connections, social networks and participating in social activities are important to individuals with advanced illness, despite significant challenges. Interventions to improve social participation can help enhance wellbeing. However, such interventions must be sensitive to context, complex needs, and challenges. A more in-depth understanding of experiences and perspectives of social well-being and associated influences is required to inform such interventions.