Background <p>After nearly four decades of Chinese one-child policy, only-children have reached a point where they need to face the challenge of parental end-of-life care. However, current studies are limited to the whole process of parental aging and lacks attention to the difficulties and challenges that arise in end-of-life care.</p> Objectives <p>This study aims to explore experiences and supportive needs of adult only-children confronting their parental end-of-life care.</p> Methods <p>This study was conducted in four medical institutions in Beijing, China. Sixteen participants were recruited through purposive and snowball sampling. Data were collected through semi-structured interviews. Interviews recordings were transcribed verbatim and analyzed following conventional content analysis approach.</p> Results <p>Three themes and nine subthemes were identified. Theme 1: Lonely boats: the characteristics of only-children confronting parental end-of-life care which includes: (a) there is no one to share burden, (b) there is no one to discuss, (c) there is no one to accompany. Theme 2: “Swaying in the storm”: experiences of adult only-children confronting parental end-of-life care, including: (a) intensive physical caregiving burden, (b) solitary decision-making, (c) emotional turbulence and psychological pressure. Theme 3: Supportive needs in confronting parental end-of-life care, including (a) need for additional caregiving assistance, (b) need for medical decision and information support, and (c) need for empathy and emotional support.</p> Conclusions <p>For adult only-children, parental end-of-life care is shaped by a structurally singular filial position in which there is no sibling to share caregiving responsibilities, no sibling to discuss difficult decisions with, and no sibling to accompany them emotionally through parental decline. This position may intensify their physical caregiving burden, solitary decision-making role, emotional turbulence and psychological strain. Targeted support should include flexible and trustworthy respite or caregiving services to relieve care burden. It should also include accessible medical information, decision-making support, advance care planning, and end-of-life education to reduce decisional isolation. Compassionate communication from healthcare professionals, together with peer and bereavement support, is needed to address emotional distress and grief. Coordinated healthcare, community, and social support systems are required to meet the distinctive needs of this growing caregiver population in China.</p> Trial registration <p>Not registered.</p>

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Lonely boats swaying in the storm: experiences and supportive needs of adult only-children confronting parental end-of-life care: a qualitative study

  • Ziyue Chen,
  • Zhaoyu Li,
  • Peng Yue,
  • Ying An,
  • Qi Shen,
  • Yinshi Kan

摘要

Background

After nearly four decades of Chinese one-child policy, only-children have reached a point where they need to face the challenge of parental end-of-life care. However, current studies are limited to the whole process of parental aging and lacks attention to the difficulties and challenges that arise in end-of-life care.

Objectives

This study aims to explore experiences and supportive needs of adult only-children confronting their parental end-of-life care.

Methods

This study was conducted in four medical institutions in Beijing, China. Sixteen participants were recruited through purposive and snowball sampling. Data were collected through semi-structured interviews. Interviews recordings were transcribed verbatim and analyzed following conventional content analysis approach.

Results

Three themes and nine subthemes were identified. Theme 1: Lonely boats: the characteristics of only-children confronting parental end-of-life care which includes: (a) there is no one to share burden, (b) there is no one to discuss, (c) there is no one to accompany. Theme 2: “Swaying in the storm”: experiences of adult only-children confronting parental end-of-life care, including: (a) intensive physical caregiving burden, (b) solitary decision-making, (c) emotional turbulence and psychological pressure. Theme 3: Supportive needs in confronting parental end-of-life care, including (a) need for additional caregiving assistance, (b) need for medical decision and information support, and (c) need for empathy and emotional support.

Conclusions

For adult only-children, parental end-of-life care is shaped by a structurally singular filial position in which there is no sibling to share caregiving responsibilities, no sibling to discuss difficult decisions with, and no sibling to accompany them emotionally through parental decline. This position may intensify their physical caregiving burden, solitary decision-making role, emotional turbulence and psychological strain. Targeted support should include flexible and trustworthy respite or caregiving services to relieve care burden. It should also include accessible medical information, decision-making support, advance care planning, and end-of-life education to reduce decisional isolation. Compassionate communication from healthcare professionals, together with peer and bereavement support, is needed to address emotional distress and grief. Coordinated healthcare, community, and social support systems are required to meet the distinctive needs of this growing caregiver population in China.

Trial registration

Not registered.