Through the Burden: A Model of Self-Transcendence in in Family Caregivers of NH Residents

TL;DR

This study explores how family caregivers of nursing home residents with dementia can find meaning and adapt through caregiving, despite emotional burdens.

Contribution

The study applies Reed’s Self-Transcendence Theory to show how family-centered care reduces burden and fosters personal growth in caregivers.

Findings

Perception of family-centered care significantly reduces caregiver burden.

Lower burden is linked to higher self-transcendence in caregivers.

Family-centered care indirectly promotes self-transcendence through reduced burden.

Abstract

Family caregivers of nursing home (NH) residents with advanced dementia often experience high emotional and logistical burden. While most models emphasize stress and coping, fewer address meaning-making and personal growth. This study applies Reed’s Self-Transcendence (ST) Theory to explore how caregiving may foster adaptation and meaning after placement.

To examine whether perceptions of family-centered care predict caregiver burden and ST.

Using a cross-sectional survey of 232 family caregivers of NH residents with advanced dementia, we examined the relationships between “Perception of Family-Centered Care” (basic care, symptom management, communication, trust, shared decision-making, and recognition of personhood), in NH staff, burden, and ST.

Structural equation modeling revealed that Perception of Family-Centered Care significantly predicted lower caregiver burden (β = –.611, p < .001). In turn, lower burden was associated with higher ST (β = –.52, p = .002). The direct path from Perception of Family-Centered Care to ST was nonsignificant (β = –.154, p = .218). However, the indirect effect from Perception of Family-Centered Care to ST through caregiver burden was significant (β = .67, 95% CI [.214 – 2.253], p = .000), indicating full mediation.

Findings highlight the transformative nature of family caregiving in the NH setting. Recognizing family caregiving as a dynamic, transformative process can guide interventions that help family caregivers move through the burden-transcend toward meaning and connection. NH policies should consider integrating structured communication, family engagement, and decision-making support to reduce burden while fostering resilience, meaning-making, and role adaptation.