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

Abstract

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.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s12904-026-02226-6.

Background

The World Health Organization (WHO) reports that by 2050, the proportion of people over 60 in the world will increase to 22%, and 80% of elderly people will come from low and middle income countries [1]. China, which currently home to the world’s largest elderly population, is expected to have 402 million people aged 60 and above by 2040, making up approximately 28% of the total population [2]. By the end of 2024, data from the National Bureau of Statistics of China show that the death toll was 10.93 million, which is 1.15 times the number of births that year [3]. This demographic shift poses profound implications for modern societies, increasing pressure on healthcare systems [4]. One of these trends is the sustained growth in demand for palliative care [5]. As populations age, increasing numbers of adult children are likely to become involved in the care of parents approaching the end of life.

Palliative care is an approach that improves the quality of life of patients and their families facing life-threatening illness by preventing and relieving suffering through the early identification, assessment, and treatment of physical, psychosocial, and spiritual problems [6]. At the same time, it emphasizes that caregivers’ quality of life is also an important consideration.

An increasing number of families are now confronting the challenge of providing end-of-life care for their loved ones [7]. Family caregivers may experience multiple and interacting challenges during this period, including hands-on care demands, symptom management, sleep disruption, physical exhaustion, work–care conflict, financial pressure, emotional distress, communication difficulties with patients and healthcare professionals, uncertainty about treatment and care decisions, and difficulties in adjusting after the death of a family member [8–10]. These challenges indicate that end-of-life caregiving is not limited to practical care tasks, but also involves emotional, relational, informational, and decision-making burdens.

Although a growing body of research has explored family caregiving, existing studies have largely examined adult child caregivers, spousal caregivers, or caregivers as a general population, with limited attention paid to adult only-children as a distinct caregiver group [11]. In the context of parental caregiving, siblings may function as important family resources. Although sibling relationships may involve unequal responsibilities or conflict, siblings can also negotiate care arrangements, provide mutual support, and cope with caregiving difficulties together [12]. Recent evidence suggests that adult only-children may be at elevated risk of financial difficulties and emotional consequences during parental general caregiving [13]. However, little attention has been paid in specifically exploring the experiences of only-children confronting parental end-of-life care.

This issue is particularly salient in China. Following the implementation of the one-child policy in the 1980s, a large number of only-children have reached middle age [14]. It is estimated that by the end of 2015, there were 224.6 million only-children in China, accounting for 43% of the birth cohort during the same period [15]. As their parents age and increasingly require long-term and end-of-life care, many only-children are becoming their sole caregivers. Within the commonly described “4-2-1” family structure in Chinese society, middle-aged only-children may simultaneously face responsibilities toward four aging parents, a spouse who is also an only-child and one or more children [16]. Without siblings to share caregiving responsibilities, these individuals often face substantial caregiving, financial, psychological, and role-related pressures.

Parental end-of-life care is a particularly vulnerable phase in which care intensity, medical uncertainty, serious illness communication, treatment decision-making, emotional distress, and bereavement may converge [13]. These challenges may be especially pronounced for only-children. This may be partly related to the distinctive parent-child relationships and cultural expectations surrounding caregiving in China.

Previous research suggests that only-children tend to have closer psychological and social ties with their parents than those with siblings [17]. Such strong parent–child bonds may intensify emotional distress when parents approach the end of life.

Furthermore, within the Chinese cultural context, filial piety and family-centered care remain deeply embedded social values that shape expectations surrounding parental caregiving [18]. Only-children may therefore experience heightened pressure to fulfill filial obligations, make morally acceptable treatment and care decisions, and meet family and societal expectations regarding parental care. When these cultural expectations intersect with intensive caregiving responsibilities, work demands, and childrearing obligations, only-children may face considerable role strain and a sense of being overwhelmed during their parents’ end-of-life period.

However, despite growing research on family caregiving and end-of-life care, little empirical evidence is available regarding how adult only-children experience parental end-of-life caregiving and what supportive needs they have in contemporary China.

Given the rapid growth of the only-child population entering the parental caregiving stage, a better understanding of only-child caregivers’ experiences during parental end-of-life care is urgently needed. Thus, this study aims to explore the experiences and supportive care needs of adult only-children who have provided end-of-life care for a parent, to inform the development of targeted support services and policies for this emerging caregiver population.

Methods

Aim

To explore the experiences and supportive needs of adult only-children confronting parental end-of-life care.

Design

A qualitative descriptive study was conducted. It provided an in-depth and firsthand understanding of the experiences and supportive needs of only-children confronting end-of-life care for parents.

Setting

Participants were recruited from four settings in China: a geriatric department in a tertiary Grade A general hospital, a hospice and palliative care department in another tertiary hospital, hospice and palliative care department in a community health service center, and a medical university. These settings were selected to capture diverse contexts in which adult only-children may encounter parental end-of-life care.

Sampling

Participants were recruited using purposive sampling to identify adult only-children who could provide rich and relevant information about parental end-of-life care. Snowball sampling was also used because eligible participants were difficult to access, and some participants were identified through referrals from existing participants or gatekeepers. Eligible criteria for study participants included (a) adult only-children whose parents have an expected survival time of less than 6 months or those parents have been deceased for more than 6 months, as bereaved children are considered to be in an acute mourning period during this time, which may not be conducive to interviews [19]; (b) aged 18 years or older; (c) only-children individuals; (d) willingness to provide informed consent and voluntary participation in the study; and (e) Mandarin speaking.

Exclusion criteria included (a) adult only-children whose parents died suddenly without a preceding period of caregiving during an advanced or terminal illness trajectory. (b) the presence of severe mental illness, cognitive impairment, or other conditions that could significantly affect the ability to participate in an interview.

The sample size was determined based on data saturation, and the recruitment was terminated when no new themes or information emerged from subsequent interviews.

Data collection

We convened research team members to discuss the core objective of exploring the experiences and needs of only-children confronting end-of-life care for parents and identified key questions for the semi-structured interview guide. Then, a semi-structured interview outline was designed to address these questions. The outline was also used to conduct an initial pilot study with two participants to further adapt and refine the interview framework. The finalized interview items were constructed around open-ended questions (see Supplementary Material), which covered three main types: (a) during the caring process, what was the most memorable event for you? (b) what difficulties did you encounter during the care process? (c) what kind of help did you wish to have at that time? Leveraging her background in end-of-life care and qualitative research, the first author (a female nursing PhD candidate) recruited participants through gatekeepers, including two head nurses of the hospital, a community health service center director, and a professor from the medical school. The first author introduced the study’s purpose to potential participants and established rapport in the following ways: (a) understanding in advance the experience of caring for parents as an only child through the gatekeeper, (b) introducing the researcher’s role, background, and the study aims during the initial meeting. A total of 24 potential interviewees were approached, of whom 16 consented to participate, and 8 declined.

The person who refused thought that mentioning their deceased parents would make them feel even sadder.

Interviews were conducted either face-to-face in a quiet office or via video conferencing, depending on the interviewees’ preferences and convenience. Only the interviewer and the participant were present during each interview. Interviews lasted between 30 and 120 min. One participant was invited for a follow-up interview to clarify his emotional experiences that were not fully developed in the initial interview.

This iterative process contributed to data completeness and depth. All interviews were audio-recorded with participants’ consent. The first author transcribed the interviews verbatim within 24 h, while also documenting non-verbal expressions and contextual observations. Transcripts were returned to participants for member checking, and no participants requested revisions. Data collection and analysis were conducted concurrently. After the 14th interview, no substantially new codes, categories, or themes emerged from the data. Two additional interviews were conducted to confirm thematic redundancy.

Data analysis

Data were analyzed using conventional content analysis as described by Hsieh and Shannon [20]. This approach was selected because limited prior research has specifically examined the experiences and supportive needs of adult only-children in parental end-of-life care. NVivo11(QSR International) was used to facilitate data management and organization. All authors had experiences in palliative care and expertise in qualitative methodology. Analysis began with repeated reading of the transcripts to achieve immersion in the data and to gain an overall understanding of the whole. Meaning units relevant to the study aim were identified and coded line by line.

Initial codes were developed inductively from participants’ own accounts rather than from predetermined categories or an existing theoretical framework. Codes with similar meanings were compared and grouped into subcategories, which were subsequently organized into categories, subthemes, and overarching themes.

Throughout this iterative process, the researchers moved back and forth between transcripts, codes, subcategories, categories, and subthemes to ensure that interpretations remained grounded in the data. Team meetings were held regularly to discuss coding decisions and emerging categories and subthemes. When differences in interpretation occurred, the researchers revisited the original transcripts and resolved disagreements through discussion and consensus. Representative quotations were selected to illustrate each category and subtheme. All interviews were conducted, transcribed verbatim, and analyzed in Chinese. Selected quotations for publication were translated into English by the first author and cross-checked by the corresponding author and bilingual members of the research team to ensure semantic equivalence.

Ethical considerations

This study was approved by the Ethics Committee of Capital Medical University (Approval: Z2023SY057). Informed consent was obtained before the interview.

Participants were informed of their right to withdraw at any time without consequence.

The study was conducted in accordance with the ethical principles of the Declaration of Helsinki. Given the sensitive nature of the topic, the interviewer closely monitored participants’ emotional responses throughout the interviews. Participants were reminded that they could pause, skip questions, or withdraw at any time. If signs of distress were observed, the interviewer paused the interview, provided immediate emotional support, and confirmed whether the participant wished to continue.

Information about psychological or bereavement support resources was available when needed. To ensure confidentiality, all identifying information was removed from the transcripts, and participants were assigned coded identifiers. Access to the data was restricted to the research team, and the data were stored in password-protected files.

Each participant received the compensation of 50 RMB (roughly 7 USD) after completing the interview.

Results

There was a total of 16 participants in this study, of whom 4 were providing end-of-life care for their parents, while the remaining 12 had parents who had passed away. Table 1 shows the detailed demographic characteristics of participants. Eight were recruited from the geriatric department of a tertiary Grade A general hospital, four from the hospice and palliative care department of another tertiary hospital, three from the hospice and palliative care department of a community health service center, and one from a medical university.

Table 1.

Demographic characteristics of only-children (N = 16)

ID	Age	Gender	Marital status	Education	Occupation	Relationship to Patient	Diagnosis of parents
A	44	Female	Married	Bachelor’s degree	Nurse	Daughter	Lung cancer
B	43	Female	Married	Master’s degree	Teacher	Daughter	Breast cancer
C	49	Male	Married	Bachelor’s degree	Manager	Son	Heart failure
D	37	Female	Married	Bachelor’s degree	Nurse	Daughter	Colon cancer
E	45	Female	Married	Master’s degree	Doctor	Daughter	Acute myocardial infarction
F	44	Male	Married	Bachelor’s degree	Manager	Son	Stomach cancer
G	30	Female	Married	Bachelor’s degree	Nurse	Daughter	Pancreatic cancer
H	42	Female	Married	Bachelor’s degree	Clinical dietitian	Daughter	Breast cancer
I	42	Male	Married	Bachelor’s degree	Public institution	Son	Breast cancer
K	41	Male	Unmarried	Bachelor’s degree	Public institution	Son	Rectal cancer
L	42	Female	Married	Master’s degree	Employee	Daughter	Esophageal cancer
M	23	Female	Unmarried	Bachelor’s degree	Employee	Daughter	Uremia with heart failure
J	42	Male	Unmarried	Bachelor’s degree	Liberal profession	Son	Pancreatic cancer
N	40	Female	Married	High school diploma	Unemployed	Daughter	Gastric cancer
O	41	Female	Divorced	High school diploma	Sales	Daughter	Gastric cancer
P	47	Male	Married	Bachelor’s degree	Diplomat	Son	Uterine Cancer Metastasis

Three themes and nine subthemes were derived from the content analysis (see Table 2). The three themes included: “Lonely boats”: the characteristics of the only-children confronting parental end-of-life care, “Swaying in the storm”: experiences of adult only-children confronting parental end-of-life care, and Needs in confronting parental end-of-life care. For clarity, in the Results section, the term ‘caregivers’ refers to the adult only-child participants in this study.

Table 2.

Summary of experiences and supportive needs of adult only-children confronting parental end-of-life care

Themes	Subthemes	Category
1. Lonely boats: the characteristics of only-children confronting parental end-of-life care	1.1 There is no one to share the burden	a) Limited availability of care labor
		b) Parental preference for child-led care
	1.2 There is no one to discuss	a) Extended relatives lack decision-making legitimacy
	1.3 There is no one to accompany	a) Self-restraint from sharing emotions
		b) Others’ limited capacity for empathy
3. “Swaying in the storm”: experiences of only-children caregivers confronting parental end-of-life care	2.1 Intensive physical caregiving burden	a) Disruption of work–life balance
		b) Impairment of physical health
	2.2 Solitary decision-making role	a) Dilemma of disclosure or concealment
		b) Dilemma of continuing versus withdrawing life-sustaining treatment
		c) The agony of frequent decision-making
		d) Decision regret
	2.3 Emotional turbulence and psychological pressure	a) Recurrent emotional breakdown
		b) Communication-induced emotional strain
		c) Anticipatory fear of parental loss
		d) Unmet filial obligation and self-reproach
4. Supportive needs in confronting parental end-of-life care	3.1 Need for additional caregiving assistance	a) Longing for someone else to share caregiving
		b) Need for flexible care support
	3.2 Need for medical decision-making and information support	a) Need for medical knowledge and decision guidance
		b) Need for accessible end-of-life care information
	3.3 Need for empathy and emotional support	a) Desire for empathetic responses
		b) Desire for emotional support

The findings characterized the experience of only-children and delineated their supportive needs (see Fig. 1).

Fig. 1.

Experiences and supportive needs of adult only-children confronting parental end-of-life care (Figure designed by the authors and refined with AI-based tools.)

Theme 1 lonely boats: the characteristics of only-children confronting parental end-of-life care

This theme describes the structural characteristics of the caregivers confronting parental end-of-life care. The metaphor of “lonely boats” captures caregivers’ descriptions of being positioned alone within the family care network. It does not mean that no other person was ever present. Some caregivers reported that the other parent could provide limited practical help. However, in most families, the other parent was also older, frail, emotionally distressed, or in need of care, and therefore could not provide sustained caregiving support. As a result, caregivers repeatedly described having no one with whom to share the burden, no one with equal family responsibility to discuss care-related decisions with, and no one who could fully understand and accompany them emotionally.

Subtheme 1.1 there is no one to share the burden

When caregivers face the heavy workload associated with parents’ end-of-life care—including medical appointments and daily caregiving tasks, they often have no one with whom to share the burden.

• a) Limited availability of care labor

Due to being the sole caregiver within singleton families, caregivers often experience an overwhelming burden and isolation when providing end-of-life care for their parents, lacking shared responsibility or adequate external support.

“Paid nursing staff simply could not meet this expectation. Healthy individuals might tolerate lying still for an hour after just ten minutes of movement, remaining comfortable without repositioning—but critically ill patients could not. When I felt stifled and needed to turn over, family members responded immediately; they helped me reposition myself. In contrast, hired caregivers often lacked the initiative to do this. Frankly, we understood their position: expecting anyone to reposition a patient every ten minutes around the clock was truly unreasonable.” (A)

“I could not avoid the responsibility of caring for my parent who was dying. Unlike families with multiple siblings, who could share the burden, I did not have such resources.” (B)

“My mother was also old, and she simply could not manage to move my father. Even though I had installed handrails for him, he did not have enough strength to support himself with them, so he would still slide down onto the floor. Then my mother had to try to lift him up. But she was thin, small and frail. She could not get him up. Besides, she had a rotator cuff injury, so her arm hurt and she could not raise it properly. If she then had to support another person, it was even more impossible for her to do so.” (E).

• b) Parental preference for child-led care

During the terminal phase, parents experience heightened physical and psychological needs for companionship, strongly preferring sustained presence and hands-on care from their only-children.

“He (her father) really needs someone to be with him psychologically — he leans on me a lot and keeps saying he wants me by his side every single day.”(O)

Subtheme 1.2 there is no one to discuss

Medical decision-making during parents’ end-of-life stages often involves substantial risks, with only-children typically serving as the primary decision-makers.

Because non-immediate relatives lack the authority to make final recommendations, caregivers may experience heightened isolation, having no alternative individuals to consult.

• a) Extended relatives lack decision-making legitimacy

“Because many decisions that they (referring to other relatives) couldn’t make either. After all, I’m the only child in the family.” (C)

Theme 1.3 there is no one to accompany

With no one sharing grief or providing emotional support, caregivers face great psychological pressure. They are eager for someone to talk to them and share their emotions, but no one can really understand their feelings.

• a) Self-restraint from sharing emotions

Caregivers experience profound emotional strain when confronting parental end-of-life care, yet receive no external emotional sustenance and must endure these trials solitarily.

“You can’t very well grab someone and chatter away about one thing all day long—they don’t have time for that! Besides, honestly, I’d feel weird just randomly dragging people into this conversation. It’s not like it’s a cheerful topic anyway.” (J)

• b) Others’ limited capacity for empathy

The emotional burden shouldered by caregivers during parental end-of-life caregiving constitutes a unique experience, leaving their psychological distress largely unalleviated due to others’ limited capacity for empathetic understanding.

“At that time, I would occasionally tell my colleagues about it, but they had never seen such a thing, so they couldn’t really empathize with me. Therefore, I didn’t often talk to them about it either.” (I)

Theme 2 “Swaying in the storm”: experiences of adult only-children confronting parental end-of-life care

The metaphor of “swaying in the storm” describes the lived experiences of caregivers when the characteristics identified in Theme 1 were translated into everyday caregiving. Caregivers had to keep moving through multiple pressures at once: providing physical care, making difficult decisions, and containing intense emotions.

Their accounts show that parental end-of-life care was not experienced as a single burden, but as an accumulation of practical, decisional, and emotional demands that they had to withstand as the only child.

Subtheme 2.1 intensive physical caregiving burden

During their parents’ end-of-life stage, caregivers take on nearly all physical caregiving responsibilities while managing daily work and personal life, resulting in disruptions of work–life balance and impairment of physical health.

• a) Disruption of work–life balance

During parents’ end-of-life care, caregivers frequently struggle to balance personal life, professional obligations, and their parents’ extensive physical and psychological care needs.

Without any help, they were forced to work day and night with almost no rest.

“I could barely sleep because he frequently woke up during the night, either gasping for breath or needing to use the bathroom. It often left me awake for hours on end, and if I managed to get even an hour of sleep, it was already a lot.” (A)

The heavy caregiving responsibilities often require caregivers to take frequent leave, which adversely affects their work performance.

“I’ve taken so much leave that my boss has started to show dissatisfaction. If this continues for another year or two, I might have to quit my job.” (K)

• b) Impairment of physical health

Due to the immense physical and psychological pressure associated with end-of-life care, caregivers may experience an impairment in their physical health.

“During my pregnancy, I experienced severe fatigue and brown discharge (while caring for my father at the end of his life). These symptoms were closely linked to the emotional strain I was under and to the stress associated with his illness.” (G)

Subtheme 2.2 solitary decision-making role

In the terminal phase of parents’ illness, caregivers, as the sole responsible party, constantly face complex decisions. They must decide whether to disclose bad news and whether to pursue life-prolonging treatments that may cause suffering. These decisions are very difficult and distressing, and many experience regret over their decisions.

• a) Dilemma of disclosure or concealment

Caregivers often face challenges in disclosing the diagnosis to their parents. While they do not intend to conceal the truth, they are concerned that their parents may not be able to accept the reality of the disease.

“I vividly remember struggling with how and when to tell him. I was cycling home from work, constantly reflecting on the best way to break the news. Despite all that contemplation, I was still uncertain.” (A)

• b) Dilemma of continuing versus withdrawing life-sustaining treatment

When parents refuse life-sustaining treatment, caregivers experience a dilemma in surrogate decision-making, weighing the prolongation of life through continued treatment against acceptance of natural death to reduce suffering.

“Due to the side effects of his reaction to chemotherapy, he no longer wished to continue. Despite understanding his pain completely, my heart resisted the idea of giving up.” (D)

• c) The agony of frequent decision-making

Caregivers were repeatedly confronted with difficult medical decisions during parental end-of-life care, such as whether to disclose the diagnosis or poor prognosis and whether to continue life-prolonging treatment. In the Chinese family-centered decision-making context, only-children often serve as the main communicators with physicians and are expected to make or help make decisions for their parents. Although some parents participated in decisions when they were able and willing, caregivers described many situations in which they had to make repeated choices under uncertainty. This process was emotionally exhausting.

“I really don’t want to make any more choices, because I have made too many choices before” (I)

• d) Decision regret

After their parents’ condition deteriorated or after their death, some caregivers continued to revisit the medical decisions made during the end-of-life trajectory. Their regret was not limited to a single treatment choice, but often involved repeated questioning of whether earlier decisions—such as surgery, chemotherapy, life-prolonging treatment—had truly benefited the parent or had instead prolonged suffering. This regret reflected the uncertainty and moral burden of making consequential decisions as the only child, rather than clear evidence that a specific treatment had worsened the parent’s condition.

“Looking back, the entire process was the result of a series of choices. I even regret my father’s decision to undergo surgery (recalling how much pain he was in at that time). Even now, when I reflect on it, I still feel regret.” (L)

Subtheme 2.3 Emotional turbulence and psychological strain

When describing their experiences of confronting parents’ end-of-life care, caregivers reported fluctuating emotional responses throughout the caregiving trajectory. These emotions oscillated between diagnostic shock, distress related to disease progression, communication challenges during care, and anticipatory fear of parental loss. In addition, as the sole caregivers without siblings or other co-experiencing family members, they often processed these experiences in relative emotional isolation, with limited opportunity to share or externalize their caregiving burden. Feelings of guilt related to perceived inadequacy in fulfilling filial responsibilities frequently coexisted with a persistent emotional attachment to their parents and fear of impending separation.

• a) Recurrent emotional breakdown

Emotional breakdown was a recurrent response triggered at key points of the illness trajectory, including diagnosis of an incurable disease and perceived treatment failure or disease progression. Caregivers described these experiences as sudden and overwhelming, with emotions re-emerging when initial treatment effects diminished or when the condition worsened.

“A shocking event (my mother’s diagnosis), something I never expected at all, suddenly seemed to crash down on me all at once. It was extremely sudden. In fact, I believe it was no different from an accident.” (B)

“I clearly remember the scene when we went to a hospital in Beijing. The medication worked at first, but when it wore off, I completely fell apart…. After the diagnosis, I conducted all the research, and no one could truly solve this disease. The existing treatments offer no hope, and I feel extremely desperate.” (I)

• b) Communication-induced emotional strain

In the parents’ end-of-life, conflicts often arise between caregivers and their parents due to the parents’ hearing loss, differing opinions on medical decisions, and frequent scolding. These conflicts result in psychological stress in their communication.

As the disease progresses, the hearing of ailing parents may decline. This can lead to increased irritability, further hampering communication with their only-children.

“After he (my father) had trouble hearing, he became very irritable and reacted emotionally to everything. We would feel a bit conflicted.” (E (with reluctance on his face))

During end-of-life care, parents may make different medical decisions from their children, which may lead to further communication-related psychological stress.

“I was really anxious because I didn’t know whether my dad would go to see a doctor. Even though the diagnosis was clear and I could make all the arrangements for him, he just needed to come there. However, he always had some excuse and never showed up. I had argued with him countless times over the issue of seeing a doctor.” (A)

During end-of-life care, although parents may wish to convey final instructions to their children, the frequency of these reminders can create communication-related psychological stress for caregivers.

“Actually, in the end, we didn’t see each other very often. Sometimes, meeting would lead to arguments. She would always remind me of the same things over and over again.” (H)

• c) Anticipatory fear of parental loss

Caregivers have fewer immediate family members, and the death of their parents is often especially difficult for them to accept, as they perceive it as the loss of the closest people in their lives.

“I’m actually very sad, but I have to accept that there’s nothing I can do. It’s really hard to be in such a painful situation. Because my mother is the person closest to me. My father was gone, so I couldn’t bear to lose my mother.” (H)

• d) Unmet filial obligation and self-reproach

As parents pass away, caregivers increasingly feel remorse for not fulfilling their filial duties in a timely manner.

“I feel I was too rational. Now I realize I was cold, spending too little time with my mom.” (C (tearfully))

Theme 3 specific needs in confronting parental end-of-life care

Due to insufficient caregivers and social support, caregivers may encounter various psychological and practical needs when confronting parental end-of-life care, including additional caregiving assistance, medical decision and information support, empathy and emotional support.

Subtheme 3.1 need for additional caregiving assistance

Caregivers describe a pressing need for additional caregiving assistance when managing their parental end-of-life care. They wish that “siblings”, extended family members, or other trusted individuals could help share the caregiving workload and associated pressure. Caregivers also express a need for reliable and flexible professional caregiving services.

• a) Longing for someone else to share caregiving

The caregivers who confront parental end-of-life care alone have great physiological and psychological pressure. They desire the presence of siblings or other relatives to share the caregiving responsibilities.

“I believe that the problems faced by only-children nowadays are indeed very serious. Because there is only one child, you really can’t handle so many things. If there are siblings, with one more child in the family, they could help each other share the pressure.” (O)

• b) Need for flexible care support

The care services available in the market are predominantly residential (live-in) models. However, terminally ill parents may be unwilling to have strangers reside in their homes. As a result, caregivers need more flexible external support options that can accommodate family routines and parental preferences, yet such alternative service models remain largely unavailable.

“I said we had to find someone for him. We had to find someone. My dad doesn’t want others to live at home. We just couldn’t find anyone at all. The housekeeping companies all offer in-home services, but we just couldn’t find someone who comes during the day and leaves at night.” (A)

Subtheme 3.2 need for medical decision and information support

Caregivers, who grappling with the helplessness of caring for terminally ill parents without consultation or support, longs for medical resources such as information about the illness and guidance on healthcare.

• a) Need for medical knowledge and decision guidance

Caregivers are expected to make treatment decisions largely alone while lacking adequate medical knowledge, which may contribute to subsequent self-reproach and regret. What they need is accessible, easy-to-understand information about the disease and treatment options, as well as professional guidance to support their decision-making.

“Making decisions alone, I questioned each one—wondering whether it was right or wrong. Even now, at this advanced stage, I still feel some guilt and sometimes wish he had not undergone the surgery. At the time, I knew nothing and had never encountered such situations before, especially regarding the medical information involved.” (N)

• b) Need for accessible end-of-life care information

Caregivers often encounter information gaps regarding elderly care, hospice care, and specialized treatments. Even when they actively search—for example, through online platforms—they find little useful or accessible information. Consequently, they express a strong need for improved accessibility to end-of-life care information.

“I searched online but couldn’t find any information related to elderly care, as well as various other specialized treatments, such as hospice care.” (P)

Subtheme 3.3 need for empathy and emotional support

Without siblings who shared the experience of a parent’s end-of-life journey, many caregivers lacked someone who could fully appreciate the emotional weight of caregiving and decision-making. Consequently, they expressed a strong need for empathy, understanding, and emotional reassurance. Being recognized and supported during difficult decisions was perceived as an important source of comfort.

• a) Desire for empathetic responses

During end-of-life decision-making and caregiving, caregivers often find themselves in an extremely vulnerable state. In such moments, a warm, empathetic statement from a healthcare professional—rather than a cold, procedural announcement—can serve as a vital source of support.

“After signing the documents, the doctor said he understood how difficult it was to make this decision. He told me a story… which really brought me great comfort. This is thanks to the doctor’s professional competence and his ability to empathize. ”(C)

“Sometimes, you know, I think it’s just one word from the doctor—one warm, caring word—that matters. Because patients and their families are already in such a fragile state, and that one word can bring them so much comfort.” (L)

• b) Desire for emotional support

Caregivers, bearing the sole responsibility for caregiving and medical decisions, expressed a strong desire for emotional support—not only from clinicians, but also from others who could understand their struggles.

“In the beginning, I was under tremendous psychological pressure. It was them who gave us support—first, the medical staff helped my father; then Sister Lingling gave us psychological comfort, for both the patient and the family members.” (L)

Discussion

This study provides an in-depth account of how adult only-children caregivers in China experienced parental end-of-life care and what support they needed. The findings suggest that their caregiving experience was not limited to the amount of caregiving they performed, but was closely related to their unique position as the only adult child in the family. Participants felt like “lonely boats” because they often had no one with comparable filial responsibility with whom they could share care, discuss difficult decisions, or express emotional distress. Within this unique familial position, parental end-of-life care was experienced as “swaying in the storm”: a process marked by continuous physical care, difficult medical decisions, and emotional suffering. The support needed by these caregivers was not single-dimensional, but involved trustworthy care resources, information and decision support, and compassionate communication.

A key finding of this study is that the loneliness experienced by only-children was not merely a consequence of insufficient support, but reflected their structurally singular position within the family. Participants repeatedly described having “no one to share the burden”, “no one to discuss”, and “no one to accompany”. These accounts suggest that the distinctive challenge faced by only-children may not simply be the intensity of caregiving itself, but the absence of another adult child occupying an equivalent filial position within the family. This finding extends previous studies that have mainly conceptualized siblings as practical caregiving resources who help distribute care tasks and responsibilities [12, 21]. While such instrumental support is important, our findings indicate that siblings may also serve a relational and moral function in parental end-of-life care. As co-children of the same parent, siblings may jointly witness parental decline, deliberate over difficult treatment and care decisions, share responsibility for morally consequential choices, and validate each other’s emotional responses. In contrast, participants in this study did not merely lack “helpers” ;they lacked another adult child with an equivalent filial identity and comparable moral responsibility. This absence may be particularly salient in the Chinese relational and family-oriented cultural context. Traditional Chinese families have long been embedded within kinship networks in which caregiving responsibilities, emotional support, and moral obligations were shared among family members [22].

Although modern society and family downsizing have transformed these structures, cultural expectations surrounding filial responsibility remain influential [23]. Thus, the loneliness reported by only-children should be interpreted as a culturally situated and structurally produced form of filial solitude, rather than simply as insufficient social support.

Only-children experienced parental end-of-life care as a convergence of caregiving, decision-making, and emotional strain that had to be managed simultaneously and largely alone. Consistent with previous studies, intensive caregiving responsibilities during parents’ end-of-life period adversely affected only-children’s work, daily life, and quality of life [24]. Similar to findings among Chinese family caregivers of older adults, filial piety may encourage adult children to perceive hands-on care as a personal responsibility and to adopt self-sacrificing caregiving strategies rather than relying on external assistance [25]. However, for only-children, this tendency is further reinforced by the absence of siblings to share caregiving duties and by concerns that others may not provide care with the same level of devotion. As a result, caregiving demands become concentrated within a single adult child, leading to more severe disruption of work–life balance and declining health.

Beyond caregiving burden, only-children also experienced considerable decisional burden throughout their parents’ end-of-life trajectory, which is consistent with recent evidence showing substantial decisional conflict, uncertainty, and regret among surrogate decision-makers [26, 27]. Although contemporary medical ethics emphasizes patient autonomy, physicians in China frequently rely on family members, particularly adult children, to determine whether prognostic information should be disclosed to the patient [28, 29]. Unlike families in which surrogate decisions can be discussed and shared among multiple family members [30], only-children frequently reported making decisions regarding truth disclosure and continuation of life-sustaining treatment alone.

Consistent with previous studies, adult children often serve as the principal decision-makers and bear responsibility for treatment decisions within Chinese families [31]. Advice from a spouse, surviving parent, or extended relatives did not replace the absence of another adult child with equivalent standing. Decisions about truth disclosure, surgery, chemotherapy, resuscitation, and life-sustaining treatment were therefore experienced as isolated and morally consequential. Emotional turbulence and psychological strain were closely intertwined with caregiving and decision-making. Participants’ recurrent emotional breakdown, anticipatory fear of parental loss, hopelessness, guilt, and self-reproach resonate with the concepts of pre-death grief and anticipatory grief, which describe grief responses that begin before the death of a loved one [32–34]. Their experiences also align with the concept of caregrieving, in which caregiving and grieving unfold simultaneously during the end-of-life trajectory [35]. The only-child context adds an important relational dimension to these concepts. Participants were not only grieving before death; they were grieving without a sibling co-witness who shared the same parent-child history and could help make sense of the impending loss. Strong filial obligations further intensified guilt when participants felt that they had not spent enough time with the parent, had made the wrong decision, or had failed to provide what they perceived as a good death. These findings suggest that only-children may be particularly vulnerable to unresolved grief and post-bereavement distress, although this study did not measure grief outcomes longitudinally. Future research should therefore examine how structural filial solitude influences bereavement trajectories after parental death.

Against this background, the supportive needs identified in this study can be understood as attempts to compensate for the concentration of caregiving, decisional, and emotional responsibilities within a single adult child. First, only-child caregivers expressed a strong need for additional caregiving assistance, reflecting the absence of siblings who could rotate caregiving tasks or provide temporary relief. This finding is consistent with previous palliative care studies showing that family caregivers often report unmet needs for practical support, respite, and assistance with daily care when caring for patients with life-limiting illness [36]. However, our findings further show that only-children did not merely lack help; they often struggled to find care arrangements that matched their parents’ preferences, household routines, and required time schedules. Respite care may therefore be particularly important for only-child families because it offers caregivers a temporary interruption from caregiving responsibilities while ensuring that patients continue to receive companionship, assistance with activities of daily living, personal care, or specialized nursing support [37, 38]. In this sense, respite care should be understood not only as a strategy for reducing caregiver burden, but also as an external mechanism for supplementing the absent sibling-based caregiving capacity in only-child families. Flexible home-based respite services, including daytime, nighttime, short-term, and needs-responsive care, may be especially relevant because only-child caregivers in this study needed support that could be adapted to specific family circumstances rather than standardized institutional arrangements. In addition to formal services, volunteer-based and community-integrated programmes may provide temporary but meaningful caregiving assistance, companionship, and emotional presence, consistent with the compassionate communities approach to end-of-life care [39, 40]. As increasing numbers of Chinese only-children confront parental end-of-life care without sibling support, the demand for accessible and flexible respite care is likely to grow. At the same time, because only-child caregivers were concerned that others might not provide care with the same attentiveness, responsibility, and filial commitment, the development of clear service standards, caregiver training, quality monitoring, and trust-building mechanisms is essential for making respite care acceptable and usable for this population.

Second, only-children’s need for medical information and decision support reflected not only informational uncertainty, but also the moral weight of making end-of-life decisions largely alone. One study underscores the value of shared decision-making, a collaborative process between clinicians and patients [41]. Although family-centred decision-making remains influential in China, patients should be supported to participate in end-of-life decisions to the extent that they are willing and able, so that only-child caregivers are not left to infer parental preferences under conditions of crisis and uncertainty. In addition, healthcare professionals can play an important role in translating complex medical information, facilitating communication about prognosis and treatment options, and supporting families to make decisions that are consistent with the patient’s values [42]. Advance care planning and end-of-life education may further reduce decisional isolation by helping families discuss prognosis, treatment preferences, life-sustaining interventions, and end-of-life wishes before acute crises occur [43, 44]. The legal recognition of living wills in Shenzhen provides an important policy opportunity for promoting advance care planning in mainland China, although broader implementation still requires public education, professional training, and culturally sensitive communication [45]. For only-child caregivers, advance care planning may be especially valuable not because it resolves sibling conflict, but because it provides a documented and mutually negotiated basis for decisions that would otherwise be made by one child alone.

Participants sought not only information and professional guidance but also respite from caregiving responsibilities, emotional understanding, opportunities to share experiences, and practical assistance throughout the end-of-life trajectory. Participants often described having no one who could fully understand their caregiving experiences, anticipatory grief, and impending loss, underscoring their need for empathy, emotional validation, and psychological support. Previous studies have shown that peer support and bereavement support programmes can reduce caregiver distress, enhance coping, and foster a sense of belonging among individuals facing similar experience [46, 47].

For only-children, peer-support groups may be particularly valuable because they provide access to others who share similar caregiving and bereavement experiences, thereby partially compensating for the absence of sibling co-experiencers identified in this study [48]. Such opportunities for emotional validation and reciprocal understanding may help mitigate the isolated caregrieving experience described by participants.

Taken together, these findings suggest that support for only-children should be conceptualized as a shared social responsibility rather than solely a professional or healthcare responsibility. Healthcare, community, and social support systems should work together to identify only-children early and provide integrated support, including flexible respite care, structured decision support, advance care planning, peer support, and bereavement services. Future longitudinal studies are needed to examine how structural filial solitude influences bereavement trajectories, prolonged grief, psychological distress, and post-loss adaptation after parental death. Comparative studies should further explore whether only-child caregivers differ from caregivers with siblings in caregiving burden, decisional regret, work–care conflict, and grief outcomes. Intervention studies are also needed to develop and evaluate targeted support models for this growing caregiver population, so that parental end-of-life care is no longer borne as an isolated filial responsibility.

Limitations

Due to the sensitivity of the topic, it is difficult to recruit participants. The fact that a quarter of the participants were healthcare professionals introduces a potential bias into the findings. As healthcare professionals may rely more on clinical routines in end-of-life decision-making, which could reduce attention to patients’ emotional preferences and potentially increase communication difficulties within families.

Furthermore, to avoid approaching individuals during the acute stages of grief, the study excluded only-children whose parents had passed away within the preceding six months. This design choice inevitably extended the time for retrospective recall, which may have also affect the results.

Conclusions

Adult only-children confronting parental end-of-life care occupy a structurally singular filial position in which caregiving, decision-making, and emotional witnessing are concentrated within one adult child. This study suggests that their difficulties are not merely individual coping problems or ordinary caregiver burden, but are shaped by the absence of a shared filial counterpart who could co-care, co-decide, and co-grieve.

In the context of population aging, family downsizing, and persistent filial expectations in China, only-child caregivers should be recognized as a distinct and potentially vulnerable caregiver group. Healthcare and community systems should identify these caregivers early and provide flexible respite care, accessible medical information, structured decision support, advance care planning, compassionate communication, and peer and bereavement support. Future research should further examine their long-term bereavement trajectories and develop targeted interventions to transform solitary filial responsibility into shared support across clinical, family, community, and social care systems.

Authors' contributions

Z.C., Z. L. and P. Y. designed the study. Z.C., Z.L., Y.A. and S.Q. conducts participant recruitment and interviews. Z.C., Z.L., Y.K. and Y.P. transcribed the interview recordings and coded the data. Z.C., Z.L. and P.Y. contributed to drafting, revising, and critically reviewing the article. All authors have read and approved the final version of the final manuscript.

Funding

This study was supported by The National Social Science Foundation of China(22BSH150).

Data availability

The datasets generated and/or analysed during the current study are not publicly available due to privacy concerns of the interviewees, but are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

This study was approved by the Ethics Committee of Capital Medical University (Approval: Z2023SY057). We have informed all participants the purpose of the study, the confidentiality of its content, and the voluntary nature of participation. All participants provided written informed consent. Participants were informed that they could withdraw their consent at any time. All participants have given informed consent. The study was conducted in accordance with the ethical principles of the Declaration of Helsinki.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.