“I’m Not Alone on This Journey—There Are Good People Out There”: Social Connectedness Among People With LTSS Needs

TL;DR

This study explores how people in California with long-term care needs experience social connectedness and isolation, highlighting the importance of relationships for their well-being.

Contribution

The paper provides new qualitative insights into the lived experiences of social connectedness among people with long-term services and supports (LTSS) needs.

Findings

Social connections come from family, caregivers, and community involvement.

Changes in health and events like the pandemic affect social relationships.

Barriers like accessibility and technology impact social connectedness.

Abstract

The demand for Long-Term Services and Supports (LTSS) in California continues to rise, with an estimated 4.1 million adults living with disabilities or chronic conditions. People with LTSS needs often experience physical isolation, which reduces opportunities to build and maintain social relationships and stay engaged in society. At the same time, social connections support well-being; yet, the lived experiences of social connectedness among this population remain understudied. The California LTSS Study includes a qualitative component that explores the experiences of older adults and adults who have difficulties with activities of daily living. We conducted open-ended, in-person interviews with a purposive sample of 90 participants. Preliminary analyses with a subgroup of 12 participants revealed insights about their experiences of social isolation and connectedness. Using analytical approaches guided by constructivist grounded theory, we identified three categories describing the lived experiences of social connectedness among people with LTSS needs: 1) the sources of social connections (e.g., family and friends, cohabitants, caregivers, community involvement, and employment), 2) perceived changes in social connections (e.g., COVID-19, worsening health conditions, and loss or gain of loved ones or caregivers), and 3) barriers and bridges to social connections (e.g., technology, mobility, accessibility, social perceptions of disability, and internal resources). These preliminary findings characterize aspects of social connectedness using the voices of people with LTSS needs and suggest the need for more in-depth, qualitative analyses that examine both opportunities and challenges related to the social well-being of this vulnerable population.