Introduction

Home hospice care is a specialized form of pediatric palliative care provided to children with life-limiting or life-threatening conditions. Its primary aim is to ensure comprehensive medical, nursing, psychological, social, and spiritual support within the child’s home environment while simultaneously supporting family members. Unlike inpatient hospice care, home hospice care enables children to remain in their familiar surroundings and maintain close family relationships. However, this model of care places substantial caregiving responsibilities on parents and other family caregivers, who are often required to provide continuous care and participate in complex medical decision-making. Although home hospice care contributes to improving the quality of life of both patients and their families, it may also be associated with a considerable physical and psychological burden for caregivers [1].

One of the most important sources of the psychological burden experienced by parents of children receiving home hospice care is the child’s underlying illness and its anticipated course. The progressive nature of many life-limiting conditions, uncertainty regarding prognosis, repeated episodes of clinical deterioration, and awareness of the potential loss of a child may contribute substantially to parental stress and emotional distress. Consequently, the psychological functioning of caregivers should be considered within the broader context of the child’s disease trajectory and the challenges associated with long-term caregiving.

Although hospice care provides comprehensive medical, psychological, and spiritual support, it does not eliminate the high levels of stress resulting from uncertainty, the necessity of making difficult decisions, and confronting the possibility of losing a child [2, 3].

Pediatric hospice care represents a unique area of the healthcare system in which medicine intersects with the profoundly human experiences of suffering, uncertainty, and loss [4]. Despite the development of palliative care standards and increasing access to interdisciplinary support, families of children receiving hospice care continue to experience a state of persistent emotional burden [5, 6]. Daily functioning under conditions of chronic stress, resulting both from disease progression and the need to make difficult therapeutic decisions, constitutes a significant challenge to their psychological well-being [7, 8].

A particularly important factor in this context is uncertainty regarding the future course of the illness and the inability to predict its progression. Parents and caregivers frequently experience intense anxiety, which tends to increase during periods of deterioration in the child’s health status or when rapid medical decisions are required [4, 9]. This is accompanied by emotional strain associated with simultaneously fulfilling multiple roles – that of caregiver, decision-maker, and source of support for a suffering child [8].

Stress experienced by parents of children receiving hospice care is an important yet still insufficiently explored issue in medical and social sciences. A child’s chronic illness, often accompanied by a poor prognosis, represents a long-term burden for the family – not only emotionally but also physically and socially [10]. Parents find themselves in a unique situation: they care for the child, participate in medical decision-making, and strive to provide emotional support. Over time, this may lead to increasing tension, helplessness, and even burnout [11].

Although hospice care focuses on improving the quality of life of both the child and their family and provides medical, psychological, and spiritual support, it does not eliminate all challenges. Parents continue to face uncertainty regarding the course of the disease, the necessity of making difficult decisions, and the prospect of loss [12].

It is worth emphasizing that the stress experienced by families receiving hospice care is multidimensional in nature [6]. It encompasses not only emotional aspects but also social and existential dimensions. Existential concerns, social isolation, limited contact with others, and a sense of being misunderstood by people outside the context of illness further intensify difficulties in adapting to their circumstances [5, 6, 13].

In this context, the analysis of factors influencing stress among parents and caregivers of children receiving hospice care becomes particularly important. Understanding these mechanisms is crucial not only from a scientific perspective but, above all, from a practical one, as it enables better adjustment of psychological, social, and spiritual support to the actual needs of families [4, 6]. Identifying these factors also provides a foundation for developing more effective intervention strategies that may significantly improve the quality of life of both caregivers and patients [2, 6].

Parents of children receiving hospice care constitute a unique group of caregivers experiencing prolonged and intensive psychological and physical burdens [1]. Their daily lives combine elements of medical caregiving, parenthood, and confrontation with the inevitability of the child’s deteriorating health condition, often accompanied by the prospect of death [14]. As a result of these challenging circumstances, parents frequently remain in a constant state of readiness, both during the day and throughout the night.

Sleep disturbances, including insomnia, are frequently reported among parents experiencing the prolonged psychological and physical burden of caring for seriously ill children. These problems may arise both directly, due to the need for nighttime caregiving, monitoring the child’s health condition, administering medications, and responding to sudden deteriorations, and indirectly, as a result of chronic emotional tension and persistent caregiver stress [2, 15].

Research indicates that the sleep of parents caring for children requiring palliative care is often shortened, fragmented, and of reduced quality. Even during periods of relative stability in the child’s condition, caregivers remain in a state of heightened vigilance, which makes it difficult to achieve full relaxation and restorative sleep [15-17].

Persistent nighttime vigilance and recurring thoughts concerning the child’s health may be associated with difficulties initiating and maintaining sleep among parents. Sleep disturbances have also been linked with higher levels of parental stress and impaired psychological functioning [7].

An additional burden is the strong emotional component involving anxiety, sadness, helplessness, and anticipatory grief, defined as experiencing loss before the child’s death occurs [2]. These experiences frequently coexist with symptoms of depression and anxiety disorders, which are closely associated with sleep quality and the chronic psychological burden experienced by parents [7]. The situation is further aggravated by limitations in social and professional life, leading to social isolation and reduced availability of emotional and practical support. Parents of children receiving palliative care often withdraw from professional activities and social interactions, focusing almost exclusively on caregiving responsibilities. This may intensify feelings of loneliness, exhaustion, and psychological overload [5, 6].

Scientific literature indicates that parents of children receiving palliative care are particularly vulnerable to sleep disturbances and broader health difficulties associated with chronic stress and sleep deprivation. These problems may negatively affect their quality of life and may impair their ability to provide effective care [15]. Therefore, contemporary approaches to hospice care highlight the importance of addressing the needs of the entire family, including the provision of psychological support and opportunities for respite care for caregivers.

The aim of the study was to assess the level of perceived stress, sleep quality, and symptoms of anxiety and depression among parents of children receiving home hospice care. The study also sought to analyze the relationships between stress, insomnia, anxiety, and depression.

Material and methods

The study was conducted between March and May 2026 among a group of 36 parents of children receiving home hospice care, following approval from the Bioethics Committee of the Faculty of Health Sciences, Jagiellonian University Medical College (No. 118.0043.1.575.2025). Participation in the study was voluntary and anonymous. Respondents were informed about the purpose of the study, their right to withdraw at any stage, and the principles of confidentiality and personal data protection. All research procedures were conducted in accordance with the ethical principles of the Declaration of Helsinki concerning research involving human participants.

The study had a quantitative, cross-sectional, and diagnostic design. A diagnostic survey method was employed using standardized psychometric questionnaires and an author-developed sociodemographic questionnaire.

A purposive sampling strategy was applied and included parents and caregivers of children receiving home hospice care. All individuals meeting the basic inclusion criteria were eligible for participation, namely: being at least 18 years of age, providing care for a child receiving home hospice care, and providing informed consent to participate in the study. Recruitment was open and included all willing parents and caregivers cooperating with the hospice during the study period.

No additional clinical criteria related to the children were applied, such as age, primary diagnosis, degree of respiratory function, or duration of hospice care. Similarly, no detailed exclusion criteria were used regarding family circumstances, coexisting physical or mental health problems among caregivers, or the duration of caregiving.

The assessment of stress levels, insomnia, and anxiety-depressive symptoms referred to the respondents’ current functioning and was conducted according to the time frames specified for each psychometric instrument: the previous month for the PSS-10, current symptoms of anxiety and depression for the HADS, and current sleep-related difficulties for the AIS.

The following standardized psychological instruments were used in the study:

The Athens Insomnia Scale (AIS) was used to assess sleep quality and the severity of insomnia symptoms. The Polish adaptation was prepared by Fornal-Pawłowska, Wołyńczyk-Gmaj, and Szelenberger [18].

The Perceived Stress Scale (PSS-10) was used to evaluate the level of perceived stress. The instrument was originally developed by Cohen, Kamarck, and Mermelstein [19], while the Polish adaptation was prepared by Juczyński and Ogińska-Bulik [20].

The Hospital Anxiety and Depression Scale – Modified Version (HADS-M) was used to assess the severity of anxiety and depressive symptoms. The original version of the scale was developed by Zigmond and Snaith [21], while the Polish adaptation was prepared by Majkowicz and de Walden-Gałuszko [22].

The HADS-M consists of 16 items and includes three subscales: anxiety (HADS-A), depression (HADS-D),
and aggression/irritability (HADS-R). In the present study, only the two primary subscales assessing anxiety and depression were analyzed, while the aggression subscale was excluded because it was not directly related to the main objective of the study, namely, the relationships between stress, sleep quality, and anxiety-depressive symptoms.

It should be emphasized that HADS is a screening instrument designed to assess the severity of anxiety and depressive symptoms; however, it does not allow for a definitive clinical diagnosis of mental disorders. Elevated scores may indicate an increased risk of anxiety and depressive symptoms and suggest the need for further psychological or psychiatric evaluation [21].

The study was supplemented by an author-developed sociodemographic questionnaire collecting basic respondent characteristics, including sex, age, place of residence, educational level, marital status, occupational status, household income, number of household members, relationship to the child requiring care (parent/legal guardian), role as the primary caregiver, cohabitation with the child, type of hospice care received, and the importance of religion and spirituality in the respondent’s life (religious affiliation and the role of religion and spirituality). These data were used to characterize the study population.

The sociodemographic characteristics were collected primarily to describe the study sample and provide contextual information regarding the participants. Due to the relatively small sample size and the exploratory nature of the study, the sociodemographic variables were not included in additional correlation analyses. Their presentation allows comparison of the study group with populations examined in previous research and facilitates interpretation of the findings.

Statistical analysis was performed using descriptive statistics, including means, standard deviations, and percentage distributions.

The relationships between perceived stress, insomnia severity, and symptoms of anxiety and depression were examined using Pearson’s product-moment correlation analysis. Pearson’s correlation coefficient (r) was employed to assess the strength and direction of linear associations between the analyzed quantitative variables and is widely recognized as a standard statistical measure in psychological and social science research.

The obtained results were interpreted in accordance with the established criteria for each psychometric scale and with current methodological standards applied in psychological and health sciences research.

Results

The purpose of the sociodemographic analysis was to present the structure of the study population and to describe potential social factors relevant to stress levels, insomnia, and anxiety-depressive symptoms (Table 1).

The study population was predominantly composed of women, individuals of working age, and residents of small and medium-sized towns. The sample structure indicates the presence of respondents simultaneously fulfilling multiple social roles, including professional and family responsibilities.

The sample was dominated by women (80.6%), with the largest age groups being individuals aged 25-54 years. Most respondents had secondary or higher education and reported a moderate economic status. A substantial proportion served as caregivers, while religiosity constituted an important aspect of life for the majority of participants.

Analysis of the results obtained using the Athens Insomnia Scale (AIS) revealed that 58.3% of respondents obtained scores indicative of probable insomnia. A borderline result was observed in 36.1% of participants, while only 5.6% showed no significant sleep disturbances. The mean AIS score in the study group was 11.14 points, indicating an elevated severity of sleep-related problems among parents of children receiving hospice care (Table 2).

An analysis was conducted to determine whether the distribution of AIS scores differed significantly across the examined categories. The results showed that the observed distribution differed significantly from the expected distribution (² = 15.17, df = 2, p < 0.001). This indicates that the frequency of clinically significant insomnia symptoms was higher than expected in the study population.

The findings suggest that sleep problems constitute a substantial issue among parents of children receiving home hospice care. More than half of the respondents met the criteria for probable insomnia, whereas only a small proportion showed no symptoms of sleep disturbances.

Analysis of individual AIS items indicated that the most frequently reported difficulties involved nighttime awakenings, reduced sleep quality, shortened sleep duration, impaired daytime well-being, and excessive daytime sleepiness.

This pattern suggests that sleep difficulties involved both sleep initiation and sleep maintenance, affecting not only the ability to fall asleep but also the ability to maintain sleep throughout the night.

In summary, more than half of the respondents screened positive for probable insomnia, according to the AIS. These disturbances most frequently involved sleep quality and continuity and were associated with substantial sleep-related difficulties.

The assessment of selected negative emotional states using the Hospital Anxiety and Depression Scale (HADS) is presented in Table 3.

The results indicate elevated levels of anxiety within the study population. Half of the respondents met the HADS-A threshold indicating probable anxiety, whereas only a small proportion (13.9%) showed no anxiety symptoms. The mean anxiety score (10.22 points) was within the borderline range and close to the threshold for probable anxiety, suggesting a substantial level of emotional distress according to the HADS-D screening instrument.

The results also revealed a high prevalence of depressive symptoms. More than half of respondents (55.5%) met the HADS-D threshold indicating probable depression, while only 5.6% reported no depressive symptoms. The mean depression score (10.86 points) was within the borderline range and close to the threshold for probable depression.

The combined HADS analysis allowed assessment of overall emotional distress (anxiety and depression). The findings indicate that anxiety and depressive symptoms coexisted within the study population and were of moderate severity (overall mean score for the combined analysis ≈ 10.54 points), reflecting a pattern of psychological distress. The relationship between these symptoms, perceived stress, and sleep quality requires further investigation.

To determine whether the distribution of symptom severity categories differed significantly, a chi-square goodness-of-fit test (²) was performed.

For the anxiety subscale HADS-A, statistically significant differences were found among the frequencies of the anxiety severity categories (² = 7.17, df = 2, p = 0.028). This indicates that the observed distribution of anxiety symptom categories differed significantly from the expected distribution.

Similarly, for the depression subscale (HADS-D), statistically significant differences were observed among the categories of depressive symptom severity (² = 10.67, df = 2, p = 0.005). The observed distribution of depressive symptom categories also differed significantly from the expected distribution.

These findings confirm that both anxiety and depressive symptoms were common among parents of children receiving home hospice care.

The Perceived Stress Scale (PSS-10) was used to assess subjectively perceived stress during the previous month. The results obtained for the study participants are presented in Table 4.

The obtained results indicate that the study group was characterized by a moderate level of perceived stress. The mean PSS-10 score (20.36 points) fell within the moderate stress range, and most respondents were classified within this category.

Moderate stress was the predominant category, reported by 77.8% of respondents, while a notable proportion of participants (16.7%) experienced high perceived stress.

To determine whether the distribution of PSS-10 categories differed significantly, a chi-square goodness-of-fit test (²) was conducted. The analysis included three interpretative categories: low, moderate, and high perceived stress.

The analysis demonstrated statistically significant differences among stress categories (² = 28.67, df = 2, p < 0.001), indicating that the observed distribution differed significantly from the expected distribution. Most respondents were classified as having moderate perceived stress, while a smaller proportion reported high stress levels.

These findings indicate that moderate and high levels of perceived stress were common among parents of children receiving home hospice care. The observed stress levels may be related to the demands associated with caregiving for a child with a serious illness; however, the present study design does not allow conclusions regarding the causes of perceived stress.

The purpose of the correlation analysis was to determine the strength and direction of relationships between:

• perceived stress (PSS-10),

• sleep quality and insomnia (AIS),

• anxiety symptoms (HADS-A),

• depressive symptoms (HADS-D).

The results of the analysis are presented in Table 5.

Prior to the correlation analyses, the normality of the distributions was assessed using the Shapiro-Wilk test. The distributions of AIS (W = 0.959, p = 0.207), PSS-10 (W = 0.979, p = 0.725), and HADS-D (W = 0.962, p = 0.244) did not significantly deviate from normality. A slight deviation from normality was observed for HADS-A (W = 0.920, p = 0.012). Given the sample size (N = 36) and the documented robustness of Pearson’s correlation coefficient to moderate violations of normality assumptions, Pearson’s product-moment correlation was used to assess relationships between variables [23, 24]. Statistical significance was set at p < 0.05.

The obtained results indicate a consistent pattern of associations among stress, sleep, and mental health. All analyzed associations were positive and statistically significant (p < 0.001), indicating that higher scores in one domain were associated with higher scores in the others. The findings suggest that chronic stress, sleep disturbances, and emotional symptoms frequently co-occur among parents of children receiving home hospice care.

The strongest relationship was observed between perceived stress and depressive symptoms (r = 0.64, p < 0.001), indicating that higher stress levels were associated with a greater severity of depressive symptoms. Significant positive correlations were also found between stress and anxiety (r = 0.59, p < 0.001) as well as between stress and insomnia (r = 0.58, p < 0.001). These findings indicate that higher perceived stress was closely associated with emotional symptoms and sleep difficulties among respondents.

Significant associations were also identified between insomnia severity and anxiety symptoms (r = 0.55, p < 0.001) as well as depressive symptoms (r = 0.61, p < 0.001), suggesting that poorer sleep quality coexists with greater emotional difficulties. Furthermore, a strong positive correlation between the HADS-A and HADS-D subscales (r = 0.62, p < 0.001) indicates the co-occurrence of anxiety and depressive symptoms within the study population.

The obtained findings indicate a pattern of associations among perceived stress, sleep difficulties, and emotional symptoms. Although the results suggest that these domains are closely interrelated, the cross-sectional design does not allow conclusions regarding causal pathways or mediation effects. The findings demonstrate significant associations between stress, sleep quality, and anxiety and depressive symptoms among parents of children receiving home hospice care.

All analyzed variables showed significant positive associations. The strongest association was observed between perceived stress and depressive symptoms (r = 0.64).

Insomnia symptoms were significantly associated with both perceived stress and anxiety and depressive symptoms.

Anxiety and depression frequently co-occurred within the study population.

The findings indicate a close interrelationship among perceived stress, sleep difficulties, and emotional symptoms; however, the direction and causal pathways of these associations require further investigation.

Discussion

The findings of the present study indicated that sleep quality and perceived stress were significantly associated with anxiety and depressive symptoms of parents of children receiving home hospice care in this study sample. The observed relationships are consistent with previous research demonstrating that chronic caregiving stress and sleep disturbances are closely associated with the development of anxiety and depressive symptoms among caregivers of chronically ill individuals [3, 7].

The observed levels of perceived stress and insomnia, anxiety, and depressive symptoms should also be interpreted in the context of the child’s underlying illness and its expected course. Previous studies have demonstrated that uncertainty regarding prognosis, fear of disease progression, and anticipation of the child’s death constitute major sources of psychological burden among parents of children receiving palliative care [4-6]. Although these disease-related factors were not directly assessed in the present study, they may have contributed to the emotional distress observed in the study group and should be considered in future research.

The present study demonstrated a positive relationship between insomnia symptoms and levels of anxiety and depressive symptoms. Similar findings were reported by Moore et al. [8], who observed that sleep-related problems among families of chronically ill children were associated with increased parental stress and impaired emotional functioning of caregivers. Likewise, Mercante et al. [17] emphasized that sleep disturbances occurring during pediatric palliative care represent one of the most common yet insufficiently recognized problems associated with family well-being.

The obtained results suggest that sleep problems had both nocturnal and daytime manifestations, influencing respondents’ daily functioning and overall psychophysical well-being. The most frequently reported difficulties involved nighttime awakenings, reduced sleep quality, and impaired daytime well-being. These findings are consistent with reports indicating that chronic caregiving burden is associated with a persistent state of heightened vigilance and difficulties in achieving adequate physical and psychological recovery [7, 16].

The results of the present study are also consistent with the findings of Winger et al. [5], who reported that long-term care of a child requiring palliative care is associated with chronic psychological burden. The authors emphasized that the constant need to respond to the child’s needs, together with the unpredictable course of the illness, is associated with sustained emotional tension. In the present study, moderate and high levels of stress predominated, indicating substantial stress levels among respondents and highlighting the psychological demands experienced by parents providing care for a child with a serious illness.

Moderate and high stress levels observed in the study population are relevant in the context of mental health, as chronic stress has been associated in previous research with the development of anxiety symptoms, depressive symptoms, and sleep disturbances. The associations identified between stress, sleep, and emotional symptoms may suggest that these domains are closely interrelated. Previous studies have described potential bidirectional relationships between parental stress and sleep disturbances, including the findings reported by Merrill et al. [7]; however, the direction of these associations cannot be determined in the present cross-sectional study.

Furthermore, the moderate economic status and high levels of self-reported religiosity observed among respondents provide important contextual information about the study population. Previous research suggests that financial difficulties may increase the challenges experienced by families caring for a child with a serious illness, whereas religiosity and spirituality may represent potential sources of support, meaning, and adaptive coping in situations of chronic stress [5, 17].

The present study highlights the importance of considering comprehensive psychological support for parents of children receiving home hospice care, including interventions aimed at reducing stress, improving sleep quality, and addressing emotional symptoms.

The predominance of mothers in the study sample reflects the caregiving structure commonly reported in pediatric palliative care, where mothers are often the primary caregivers [3, 4, 6]. Nevertheless, previous studies indicate that mothers and fathers may differ in their emotional responses to a child’s illness, stress perception, and coping strategies [3, 4]. Therefore, the unequal gender distribution should be considered when interpreting the present findings. Due to the relatively small number of fathers included in the study, separate gender-specific analyses were not performed, as such comparisons would have had limited statistical reliability. Consequently, this should be regarded as a limitation of the present study. Future research based on larger and more balanced samples is warranted to investigate potential gender differences in psychological functioning among parents of children receiving home hospice care.

Conclusions

The study group of parents of children receiving home hospice care demonstrated the coexistence of elevated perceived stress levels, sleep disturbances, and anxiety-depressive symptoms.

The obtained findings indicate that higher levels of perceived stress related to the caregiving role were associated with greater symptoms of anxiety and depression and poorer sleep quality of parents of children receiving hospice care.

Sleep disturbances may represent an important factor associated with the relationship between perceived stress and symptoms of anxiety and depression among the respondents.

The results of the study suggest the importance of providing comprehensive psychological support for parents of children receiving hospice care, including strategies aimed at stress management and improvement of sleep quality.

Disclosures

This research received no external funding.

The study was approved by the Bioethics Committee of the Faculty of Health Sciences, Jagiellonian University Medical College (Approval No. 118.0043.1.575.2025).

The authors declare no conflict of interest.

References