The experiences of caring for disabled older adults in long-term: A qualitative study from the perspective of spousal caregivers

Abstract

Objective To explore the care experiences of spouses as long-term and primary caregivers for disabled older adults in China. Methods A descriptive phenomenological method was used in this study, as well as purposive and convenient sampling. Semi-structured interviews were conducted with 15 spousal caregivers in Guangdong, China, from March to December 2021. Interview audio-recordings were transcribed verbatim and data were analyzed using Colaizzi's phenomenological analysis method. Results We identified four themes from the data: spousal care motivation; sacrifices in caregiving; obstacles in caregiving; spousal caregivers’ positive experiences. Conclusions Spouses took responsibility for providing care for their disabled partners regardless of their willingness. They had positive experiences while providing care, but negative experiences were dominant, especially for spouses of severely disabled older adults. Spouses are always perfect in caregiving roles, although they may also need medical assistance. To prevent a decline in spousal caregivers’ quality of life and relieve their care burdens, health care providers should support them as soon as possible or offer formal care for disabled older adults. It is necessary to intervene considering disabled older adults and their spousal caregivers as a unit to empower their confidence in coping with life together.