Navigating Interdependence: The End-of-Life Caregiving Process of Adult Only Children Caring for Their Parent

Background/Purpose: Since its implementation in the 1970s, China’s one-child policy has shaped a unique generation of individuals who have been raised and grown up under its influence. The one-child policy has shaped the life experiences of millions of only children in China and providing end-of-life care to their aging parents is becoming a critical social issue. Despite the extensive literature on end-of-life caregiving experiences and existing models, the unique end-of-life caregiving process experienced by China’s only-child generation while caring for their terminally ill parents remains insufficiently explored, with no existing literature investigating this phenomenon. This study applies qualitative analyses to examine the end-of-life caregiving experiences of only-child populations who have lost their parent(s) within the past five years (2018-2023).

Methods: A qualitative research design was employed. Participants were required to be aged 18 or older, have suffered a non-accidental parental loss between 2018 and 2023, and provided at least one month of end-of-life care leading up to their parent’s death. Recruitment flyers were posted on four major social media sites in China between November 2023 to March 2024. Eligible participants were provided with consent forms. Individual interviews were conducted either online through Tencent Meeting or WeChat, or in person. Interviews were recorded and transcribed verbatim. Interview transcripts were analyzed using thematic analysis. Our initial data analysis was deductively guided by the “Seeking Normal” model; however, emergent patterns were raised in a parallel inductive analysis which centered the caregiving relationship as opposed to the disease process. Therefore, the research team chose to focus on the inductive data analysis in presenting the findings.

Findings: A total of 15 eligible participants were included in the study. Most of the participants were female (73.3%), with an age range of 21 to 43, and about half of them served as caregivers of their fathers (53.3%). The emergent caregiving process encompasses four phases of interdependence depicted through the metaphor of charting a sailing voyage: 1) Sailing Out of the Harbor: Continued Interdependence; 2) Navigating Back to the Harbor: Inverted Interdependence and Shifting Life Emphasis; 3) The Collapsing Harbor: Decoupling Interdependence and Preparation for Bereaved Life; 4) The Navigator’s and Harbor’s Reconstruction: Divergent Interdependence and Social Life. Three turning points sequentially connect the four phases: 1) realizing the severity of the illness and caregiving should be the main task; 2) sensing the impending death; 3) death of and/or farewell to the parents. The parent-child relationship anchors the process, while sociocultural context and illness progression drive the process forward.

Conclusions and Implications: These findings underscore the unique dynamic of interdependence during end-of-life caregiving among adult only children in China. Our findings highlight the need to center relationality and context-sensitive frameworks in future theorization efforts, moving beyond Western-centric models of autonomy regarding the end-of-life caregiving process. Practitioners, especially social workers, can utilize these insights to provide competent psychosocial care in response to the unique dynamics of interdependence and caregiving stress in individual cases. Further, advocacy for death education and policy to promote hospice and palliative care are recommended.