Loneliness in advanced life-threatening illness: an integrative review

Context

To inform supportive interventions, experiences of loneliness must be understood specifically from the perspective of those with advanced life-threatening illness and their caregivers.

Objectives

To identify the causes, experiences, and impacts of loneliness among adults with advanced life-threatening illnesses and caregivers, and which modifiable factors might mitigate loneliness.

Methods

Systematic searching of six databases (CINHAL, Web of science, Cochrane central, Medline, HMIC and Proquest) was supplemented by backward citation searching from Jan 2014-Jan2024. This was followed by screening and selection based on the PRISMA extension for scoping reviews (PRISMA-ScR) guidelines. Studies were imported into NVivo version 1.6 for data management. An inductive approach was used to facilitate the synthesis. Quality assessment with diverse studies (QuADS) was used. The review protocol was registered with Prospero, ID: CRD42023493999.

Results

Ninteen observational studies and 6 intervention studies were included in this review. Evidence confirms that the causes, impacts and outcomes of loneliness are multifaceted and interact dynamically. Risk factors on a micro level include psychological and existential factors such as emotional distress and fear of death; potentially modifiable factors include efforts to enhance communication and befriending programs. On meso level physical and social factors are risk factors such as symptom burden and social withdrawal, potentially modifiable factors include utilizing technology to make home an accessible place to maintain social connections. On a macro level environmental and societal risk factors include mobility restrictions and stigma; potentially modifiable factors include increasing societal engagement through community programs

Conclusion

This integrative review will help healthcare providers, policymakers and the public understand the causes, experiences and impact of loneliness in adults with advanced life-threatening illnesses and their caregivers. The evidence suggests that an integrated approach that combines personal, social, and systemic efforts is needed which includes enhanced communication, targeted interventions, robust support systems, and community engagement. Rigorous research studies are required which include patient and public involvement from inception to completion to ensure that the study designs and methodologies are purposeful for those they intend to serve.