Abstract
Background
Family caregivers of cancer patients receiving home-based palliative care often experience growing responsibilities. Nonetheless, research remains scarce on the extent to which patients’ clinical status is associated with caregivers’ unmet needs and quality of life, particularly in terms of the interaction between patients and caregivers.
Objective
This study aimed to examine the relationships of cancer patients’ unmet supportive care needs and symptom burden with caregivers’ quality of life and their own unmet supportive care needs through a multiple mediation model.
Methods
This cross-sectional study comprised 124 cancer patients and 124 caregivers registered with a home-based palliative care unit. To explore the mediating roles of patients’ unmet care needs and symptom burden, serial mediation analysis was performed using the PROCESS Macro (Model 6).
Results
Caregivers reported considerable supportive care needs (mean = 2.94, SD = 0.80) and a moderate level of quality of life (mean = 70.72, SD = 19.02). A significant serial mediation pathway emerged, indicating that patients’ unmet needs and symptom burden jointly mediated the relationship between caregivers’ quality of life and supportive care needs (Total indirect effect = − 0.01; 95% CI: − 0.02 to − 0.01).
Conclusions
The findings suggest that the challenges experienced by patients and caregivers during the care process may reflect mutual interaction within an interdependent care system in home-based palliative care.
Supplementary Information
The online version contains supplementary material available at 10.1186/s12904-026-02126-9.
Keywords: Cancer, Caregiver, Palliative Care, Home Care, Quality of Life, Supportive Care
Background
Cancer is a complex disease that affects both individuals and their families, resulting in long-term physical, psychological, and social care needs [1]. Although advanced treatment options have extended the life expectancy of individuals with cancer, they have also led to an increase in the duration and intensity of care [2]. In the advanced stages of cancer, patients often require continuous support that extends beyond hospital settings to include home-based palliative care, provided either informally by family or through professional services [3]. Typically, caregivers are close family members with no formal medical training, yet they assume significant responsibilities in the patient’s care [4]. Home-based palliative care encompasses more than physical assistance; it includes managing emotional needs, supporting daily living activities, and addressing symptom-related challenges [5]. Existing literature emphasizes that long-term caregiving is associated with substantial psychological strain, including burnout, social withdrawal, and various health problems [6, 7]. These stressors can significantly impair caregivers’ quality of life, affecting their physical health, interpersonal relationships, financial stability, and mental well-being [4]. This is largely due to the complex nature of cancer care, which goes beyond medical treatment to involve psychosocial support, information provision, lifestyle changes, and comprehensive symptom management [8]. The literature shows that 40.7% of home care services provided to patients consist of medical examinations and treatments, whereas care-related services account for only 13.6% [9, 10]. At the patient level, studies have indicated that there are often unmet needs in areas such as pain management, nutrition, mobilization, sleep, personal hygiene, psychological support, and coping with uncertainties about the future, particularly among patients with advanced-stage cancer receiving palliative care [11, 12].
When patients’ care needs are insufficiently addressed in palliative care, their quality of life decreases; at the same time, caregivers attempting to meet these needs may also experience a secondary decline in their own well-being [8]. Difficulties in managing symptoms such as pain, insomnia, appetite loss, and substance dependence can place significant physical and emotional strain on caregivers, thereby reducing their quality of life [7, 8]. Furthermore, caregivers’ unmet needs—particularly in areas such as access to information and healthcare services—can further exacerbate this decline, underscoring the multidimensional challenges they face throughout the palliative care process [13]. Taken together, these findings suggest that patient-related clinical demands and caregiver-related outcomes should be considered within a shared care context rather than as isolated experiences.
In this study, the Dyadic Cancer Outcomes Framework (DCOF), which emphasizes the mutual interaction between the cancer patient receiving home-based palliative care and the caregiver, was adopted as the theoretical framework [14]. The DCOF proposes that the health and psychosocial experiences of both the patient and the caregiver are shaped not only at the individual level but also through dyadic interdependence [15]. Within this framework, the unmet care needs (M1) and symptom burden (M2) of the home-based palliative care cancer patient were conceptualized as dyadic stressors, while the caregiver’s quality of life (X) and supportive care needs (Y) were considered interrelated caregiver outcomes within the broader dyadic process [14, 15].
Within the context of home-based palliative care, caregiver quality of life may be understood not only as an outcome, but also as a condition that shapes caregiving capacity in daily practice [16]. Caregivers with poorer quality of life may have reduced physical and emotional resources, which may in turn limit responsiveness to patient needs, symptom monitoring, and care coordination in the home setting [15, 17]. In this sense, caregiver quality of life may be theoretically linked to patient symptom burden and unmet care needs, while these processes are still likely reciprocal within the DCOF [15, 18].
In the present study, caregiver quality of life was specified as the independent variable and caregiver supportive care needs as the dependent variable in order to test the hypothesized analytic pathway shown in Fig. 1. However, given the cross-sectional design, this specification should not be interpreted as establishing definitive temporal or causal ordering [19, 20]. In line with the concept of dyadic interdependence, the patient’s burden may affect the caregiver, while caregivers’ limited access to support may also indirectly influence the care process and patient-related outcomes. Thus, the DCOF offers a perspective in which supportive care needs in palliative care are understood not merely as individual experiences, but as part of a reciprocal and interactional dyadic process [14, 18].
Fig. 1.
Hypothesized dyadic analytic pathway applied to caregivers of patients receiving home-based palliative care. Reciprocal associations are conceptually possible within the DCOF; however, this figure presents the pathway tested in the present cross-sectional study
The unmet care needs of patients in the home-based palliative care process not only negatively affect their quality of life but also threaten the quality of life of caregivers by causing physical and mental strain [13, 21]. However, existing studies have primarily examined the impact of patients’ symptom burden and unmet care needs on caregivers’ quality of life and care needs through indirect associations [22–24]. Thus, the present study offers a valuable contribution to the literature by demonstrating that the challenges faced by caregivers are not solely a result of individual circumstances, but are also shaped by patients’ symptom burden and unmet care needs, highlighting a theoretical dyadic perspective.
This aspect has largely been explored only indirectly in prior research. To address this gap, the present study aimed to examine the effects of cancer patients’ unmet supportive care needs and symptom burden in home-based palliative care on caregivers’ quality of life and their own unmet supportive care needs, within the framework of a multiple mediation model. Given the cross-sectional design, the following hypotheses reflect theory-informed assumptions for analytic testing rather than definitive temporal or causal ordering. Within the context of home-based palliative care, the hypotheses of the study are as follows:
Hypothesis 1: Patients’ unmet care needs are positively associated with caregivers’ supportive care needs.
Hypothesis 2: Patients’ symptom burden is positively associated with caregivers’ supportive care needs.
Hypothesis 3: Caregivers’ supportive care needs are negatively associated with caregiver quality of life.
Hypothesis 4: Patients’ unmet care needs (M1) and symptom burden (M2) sequentially mediate the relationship between caregivers’ quality of life (X) and caregivers’ supportive care needs (Y).
Methods
Study design
We conducted a descriptive and cross-sectional study following the recommendations of the STROBE statement checklist [25]. The sample consisted of 124 cancer patients receiving home palliative care and their 124 primary family caregivers who were followed by the home healthcare unit of a tertiary hospital between February 2022 and August 2022.
Participants
The sample size was determined using the G*Power 3.1.9.2 software. Based on the parameters reported by Cheng et al. (2022), a minimum sample size of 118 was calculated, assuming an effect size of 0.53, a significance level of α = 0.05 (95% confidence level), and a statistical power of 0.80 [26]. The study included 124 dyads, each consisting of a cancer patient receiving home-based palliative care and their primary caregiver. Participants were identified through the Home Health Services Unit of a hospital located in a western province of the country. Eligible dyads were selected by screening the unit’s patient database, and potential participants were contacted during home visits conducted with the accompaniment of healthcare personnel.
Inclusion criteria were as follows: For patients – being 18 years of age or older, having a cancer diagnosis, being able to communicate in Turkish, having no cognitive impairment, receiving home healthcare services, and participating voluntarily in the study. For caregivers – being the patient’s primary caregiver, being 18 years of age or older, and participating voluntarily in the study. If either member of the dyad declined to participate or was unable to complete the data collection process, the dyad was excluded from the study.
A total of 129 patient–caregiver dyads were initially approached. However, interviews with some dyads could not be completed for various reasons. Three patients and/or caregivers declined to participate. One patient became physically unwell during the interview, and another was unable to continue due to speech difficulties. As a result, data could not be collected from five dyads. Ultimately, complete responses were obtained from 124 patient–caregiver dyads. The response rate was 96.1%.
Data collection
For patients, the following instruments were used: Diagnostic Form, Edmonton Symptom Assessment Scale, and Short Form for Supportive Care Needs of Cancer Patients. For caregivers, the following instruments were used: the Assessment Form, the Caregivers’ Supportive Care Needs Scale, and the Quality of Life Scale for Caregivers of Cancer Patients.
The Diagnostic Form was a researcher-developed data collection form used to obtain sociodemographic and clinical characteristics of both patients and caregivers. The form was prepared in accordance with the relevant literature and did not include any scale-based or psychometric measurements. For patients, the form included variables such as age, sex, health insurance, educational status, marital status, monthly income, cancer diagnosis, time since diagnosis, treatment modality, treatment duration, chronic disease status, and regular medication use. For caregivers, the form included age, sex, educational status, marital status, occupation, health insurance, employment status, relationship to the patient, number of children, monthly income, caregiving duration, daily caregiving hours, other caregiving responsibilities, living arrangement, co-residence with the patient, presence of another caregiver, chronic disease status, ability to attend regular medical appointments, and regular medication use [7, 27]. The full form is provided as Supplementary File 1.
Patients’ functional status was assessed using the Eastern Cooperative Oncology Group (ECOG) Performance Status scale, which evaluates self-care ability, daily activity level, and physical functioning. For descriptive analysis, ECOG Performance Status was categorized as 0–1 and 2–4 [28].
The Edmonton Symptom Assessment Scale, originally developed by Bruera et al. (1991), was adapted and validated for the Turkish population by Yeşilbalkan et al. (2008). The scale comprises 10 symptom items: pain, activity, nausea, depression, anxiety, insomnia, anorexia, feeling unwell, shortness of breath, and an additional item for other symptoms. Each item is rated on a Likert scale from 0 to 10, with higher scores indicating greater symptom severity. In the Turkish validity and reliability study, Cronbach’s alpha value was found to be 0.77 [29]. In our study, Cronbach’s alpha value of the scale was found to be 0.85.
The Supportive Care Needs of Cancer Patients Short Form, developed by McElduff et al. (2004), was validated and tested for reliability in Turkish by Aksuoğlu (2015) [30, 31]. It consists of a total of 34 items and five subscales. The subscales of the instrument include psychological/emotional, healthcare system and information, physical and daily living, patient care and support, and sexuality. The total score of the scale ranges from 31 to 155. Higher scores indicate greater supportive care needs. In the Turkish validity and reliability study, Cronbach’s alpha coefficients ranged from 0.93 to 0.97 [30]. In the present study, Cronbach’s alpha coefficient for the scale was 0.97.
The Caregiver Supportive Care Needs Scale, developed by Girgis et al. (2011), was validated and tested for reliability in Turkish by Ergen et al. (2017) [32, 33]. The scale includes a total of 39 items and comprises four subscales: healthcare services, psychological and emotional needs, work and social needs, and information needs. Higher total and subscale scores indicate greater supportive care needs among caregivers. In a study on the validity and reliability of the Turkish version, Cronbach’s alpha value of the scale was 0.95 [32]. In this study, Cronbach’s alpha value was 0.96.
The Caregiver Quality of Life Index-Cancer Scale (CQOLC), originally developed by Weitzner et al., was adapted and validated for the Turkish population by Yakar and Pınar [34, 35]. The scale comprises 35 items and includes four subscales: burden, distress, positive adjustment, and financial hardship. The total score is obtained by assigning a minimum of 0 points and a maximum of 4 points to each item. Using this scoring method, the subscale scores and the total scale score range from 0 to 140, with higher scores indicating better quality of life. The scale does not have a cutoff score. In a study on the validity and reliability of the Turkish version, Cronbach’s alpha value of the scale was 0.95 [35]. In this study, Cronbach’s alpha value was 0.96.
Statistical analysis
The data were analyzed using SPSS 25.0 software (IBM Corp., Armonk, NY, USA). The descriptive data of the patients and caregivers who participated in the study were evaluated using percentages, frequencies, means, and standard deviations. The data obtained were normally distributed according to the Kolmogorov-Smirnov test (p = .20). The relationships between the variables belonging to patients and caregivers were evaluated using Pearson’s correlation analysis.
To investigate the hypothesized serial mediation model, PROCESS macro version 3.4 (Model 6) developed by Hayes was employed. In this model, caregivers’ supportive care needs were entered as the dependent variable (Y), patients’ unmet supportive care needs as the first mediator (M1), patients’ symptom burden as the second mediator (M2), and caregivers’ quality of life as the independent variable (X). In accordance with the DCOF, this specification was used to test one theory-informed analytic pathway. Patients’ unmet care needs were positioned as M1 and symptom burden as M2 to reflect the clinical assumption that inadequately addressed care needs in home-based palliative care may be linked to greater symptom burden. However, given the cross-sectional design, this ordering should not be interpreted as definitive temporal or causal sequencing. Caregiver age was included as a control variable in the analyses. PROCESS estimates the indirect effects via ordinary least squares (OLS) regression [36]. A 95% confidence interval (CI) was calculated for each regression coefficient, with intervals excluding zero considered statistically significant. Mediating effects were assessed using bootstrap procedures with 5,000 samples, employing a 95% CI. The level of statistical significance was set at p < .05. A serial mediation analysis was conducted to examine whether patients’ unmet care needs and symptom burden sequentially mediated the relationship between caregivers’ quality of life and caregivers’ supportive care needs.
Ethics considerations
Approval was obtained from the institution and the university’s non-interventional research ethics committee to conduct the study (Approval no: 2021/22 − 16, Dated:28.07.2021). The study was conducted in accordance with the principles of the Helsinki Declaration. After approval was obtained, patients and caregivers who agreed to participate in the study were informed about the study and asked to sign an informed consent form.
Results
Descriptive statistics of patients and caregivers
A total of 124 patients and their caregivers participated in the study. The mean age of the patients was 67.86 ± 12.46 years. A total of 60.5% were male, and 53.2% had a literacy/primary school education level. It was determined that 19.4% of the patients included in the study had lung cancer, 17.7% had colon cancer, and 93.5% were receiving cancer treatment. A total of 53.2% of the patients had been receiving treatment for less than 1 year, and 48.4% were receiving chemotherapy.
The average age of the caregivers was 52.42 ± 12.86 years. A total of 75.8% were female, 47.6% had been providing care for 1–3 years, and 36.3% were the patient’s spouse or son/daughter. The caregivers spent an average of 7.16 ± 8.47 h per day caring for their patients. According to ECOG Performance Status, 25.8% of the patients were in the 0–1 category, whereas 74.2% were in the 2–4 category (Table 1).
Table 1.
Descriptive statistics for patients and caregivers (n = 124)
| Descriptive Characteristics |
CAREGİVER (n = 124) |
Descriptive Characteristics |
PATİENT (n = 124) |
|---|---|---|---|
| n, % | n, % | ||
| Age (Mean ± SD) | 52.42 ± 12.86 | 67.86 ± 12.46 | |
| Gender | |||
| Famale | 94 (75.8) | 49 (39.5) | |
| Male | 30 (24.2) | 75 (60.5) | |
| Educational Status | |||
| Illiterate | 12 (9.7) | 20 (16.1) | |
| Literate/Elementary School | 58 (46.8) | 66 (53.2) | |
| Middle School/High School | 30 (24.2) | 22 (17.7) | |
| Associate Degree/Bachelor’s Degree | 24 (19.3) | 16 (12.9) | |
| Marital Status | |||
| Married | 101 (81.5) | 82 (66.1) | |
| Single | 23 (18.5) | 42 (33.9) | |
| Insurance Coverage | |||
| Yes | 95 (76.6) | 114 (91.9) | |
| No | 29 (23.4) | 10 (8.1) | |
| Monthly Income Level | |||
| Low | 53 (42.7) | 54 (43.5) | |
| Normal | 71 (57.2) | 70 (56.4) | |
| Presence of Chronic Disease | |||
| Yes | 56 (45.2) | 90 (72.6) | |
| No | 68 (54.8) | 34 (27.4) | |
| Regular Medication Use | |||
| Yes | 59 (47.6) | 91 (73.4) | |
| No | 65 (52.4) | 33 (26.6) | |
| Occupation | Cancer diagnosis | ||
| None | 81 (65.3) | Gastrointestinal cancer | 11 (8.9) |
| Worker | 9 (7.3) | Lung cancer | 24 (19.4) |
| Civil servant | 15 (12.1) | Breast cancer | 13 (10.5) |
| Other | 19 (15.3) | Prostate cancer | 13 (10.5) |
|
Degree of closeness to the patient Spouse |
45 (36.3) | Brain cancer | 7 (5.6) |
| Colon cancer | 22 (17.7) | ||
| Son/daughter | 45 (36.3) | Ovarian/uterine cancer | 13 (10.5) |
| Mother/father/parent | 14 (11.3) | Pancreatic cancer | 6 (4.8) |
| Other | 20 (16.1) | Other | 15 (12.1) |
| Work Status | Diagnosis period | ||
| Working | 29 (23.4) | 0–2 months | 17 (13.7) |
| Not Working | 95 (76.6) | 3–6 months | 19 (15.3) |
| Care provision period | 6 months and above | 88 (71.0) | |
| Less than 1 year | 34 (27.4) | Receiving cancer treatment | |
| 1–3 years | 59 (47.6) | Yes | 116 (93.5) |
| More than 3 years | 31 (25) | No | 8 (6.5) |
| Living in the Same House as the Patient | Treatment duration | ||
| Yes | 100 (80.6) | Less than 1 year | 66 (53.2) |
| No | 24 (19.4) | 1–5 years | 48 (38.7) |
| 5 years and above | 10 (8.1) | ||
|
Daily care time (hours) (Mean ± SD) |
7.16 ±8.47 | ECOG Performance Scale | |
| 0–1 | 32 (25.8) | ||
| 2–4 | 92 (74.2) | ||
Patient symptom burden and unmet care needs
The mean total score on the Edmonton Symptom Assessment Scale was 4.84 ± 1.79. Among the reported symptoms, fatigue (mean = 6.02 ± 2.72) and a general sense of feeling unwell (mean = 5.72 ± 2.34) were the most prevalent. The average total score for patients’ unmet care needs was 93.66 ± 27.30. The domain with the highest unmet needs was “Health System and Information,” with a mean score of 29.74 ± 9.92 (Table 2).
Table 2.
Descriptive statistics on patients’ symptom levels and unmet care needs, as well as caregivers’ supportive care needs and quality of life levels (n = 124)
| Scale and sub-dimension | Min-Max | M ± SD | |
|---|---|---|---|
| Patient (P) | Edmonton Symptom Assessment Scale (Total) | 1 ˗ 9.30 | 4.84 ± 1.79 |
| Pain | 1 ˗ 10 | 4.96 ± 2.62 | |
| Fatigue | 1 ˗ 10 | 6.02 ± 2.72 | |
| Nausea | 1 ˗ 10 | 3.74 ± 2.56 | |
| Sadness | 1 ˗ 10 | 5.51 ± 2.62 | |
| Anxiety | 1 ˗ 10 | 5.36 ± 2.74 | |
| Insomnia | 1 ˗ 10 | 4.85 ± 2.68 | |
| Loss of appetite | 1 ˗ 10 | 5.11 ± 2.81 | |
| Feeling unwell | 1 ˗ 10 | 5.72 ± 2.34 | |
| Shortness of breath | 1 ˗ 10 | 3.94 ± 2.70 | |
| Constipation | 1 ˗ 10 | 3.22 ± 3.52 | |
| P-Supportive Care Needs (Total) | 33 ˗ 155 | 93.66 ± 27.30 | |
| Mental/psychological | 9 ˗ 45 | 28.89 ± 10.09 | |
| Health system and information | 10 ˗ 50 | 29.74 ± 9.92 | |
| Physical and daily life | 5 ˗ 25 | 17.11 ± 5.44 | |
| Patient care and support | 4 ˗ 20 | 11.85 ± 4.14 | |
| Sexuality | 3 ˗ 15 | 6.06 ± 3.16 | |
|
Caregiver (C) |
C- Supportive Care Needs (Total) | 1.21 ˗ 5 | 2.94 ± 0.80 |
| Health care services | 1.09 ˗ 5 | 3.00 ± 0.90 | |
| Psychological and emotional | 1.07 ˗ 5 | 2.89 ± 0.90 | |
| Work and social | 1 ˗ 5 | 2.73 ± 0.94 | |
| Information | 1 ˗ 5 | 3.18 ± 0.90 | |
| C-CQOLCa(Total) | 17 ˗ 121 | 70.72 ± 19.02 | |
| Burden | 7 ˗ 129.5 | 67.38 ± 28.16 | |
| Disruptiveness | 10 ˗ 140 | 79.52 ± 29.61 | |
| Positive Adaptation | 25 ˗ 125 | 74.60 ± 20.52 | |
| Financial Concerns | 0 ˗ 140 | 68.02 ± 38.70 | |
M Mean, SD Standard deviation
aCQOLC Caregiver Quality of Life Index-Cancer
Supportive care needs and quality of life of caregivers
The total mean score for caregivers’ supportive care needs was 2.94 ± 0.80. The highest supportive care needs were in the area of information (3.18 ± 0.90). The total average score for quality of life was 70.72 ± 19.02. The highest score for caregiver quality of life was in the area of disruptiveness (79.52 ± 29.61) (Table 2).
Correlations between caregivers’ supportive care needs and quality of life and patient-related variables
A strong, positive, and statistically significant correlation was identified between patients’ unmet care needs and caregivers’ supportive care needs (r = .64, p < .001). Patients’ unmet care needs were positively associated with caregivers’ supportive care needs.
A strong positive correlation was found between the total symptom burden of patients (r = .64, p < .001) and the unmet care needs of caregivers. Patients’ symptom burden was positively associated with caregivers’ supportive care needs.
A strong negative correlation was observed between caregivers’ quality of life and their supportive care needs (r = –.71, p < .001). Caregivers’ quality of life was negatively associated with their supportive care needs (Table 3).
Table 3.
Correlation between caregivers’ supportive care needs and other variables (n = 124)
| Scale and sub-dimension | C-Supportive Care Needs | |
|---|---|---|
| r | p | |
| Edmonton Symptom Assessment Scale (Total) | 0.64 | < .001a |
| Caregivers’ CQOLCb (Total) | ˗0.71 | < .001a |
| Patients’ Supportive Care Needs (Total) | 0.64 | < .001a |
r: Pearson correlation, ap<0.05
bCQOLC Caregiver Quality of Life Index-Cancer
Testing the serial mediation model
In the present study, we analyzed whether patients’ unmet care needs (M1) and symptom burden (M2) sequentially mediated the relationship between caregivers’ quality of life (X) and caregivers’ supportive care needs (Y) (Hypothesis 4). According to the results of the model analysis, caregiver quality of life was negatively related to patients’ unmet care needs (a1 = − 0.737, 95% CI: − 0.96 to − 0.52). Patients’ unmet care needs, on the other hand, were found to be positively related to symptom burden (d21 = 0.037, 95% CI: 0.03 to 0.05). In addition, patients’ symptom burden was significantly and positively associated with caregivers’ supportive care needs (b2 = 0.12, 95% CI: 0.06 to 0.18). The direct association between caregivers’ quality of life and their supportive care needs was statistically significant (c’ = − 0.019, 95% CI: − 0.02 to − 0.01). The total indirect effect of caregivers’ quality of life on their supportive care needs was also significant (Total indirect effect = − 0.01, 95% CI: − 0.02 to − 0.01). Notably, the sequential indirect effect via patients’ unmet care needs and symptom burden was significant (a1 × d21 × b2 = − 0.0034, 95% CI: − 0.0063 to − 0.0011). This model accounted for 65.7% of the total variance in caregivers’ supportive care needs. These results support Hypothesis 4 and suggest that the relationship between caregivers’ quality of life and their supportive care needs was statistically linked through the sequential mediating roles of patients’ unmet needs and symptom burden (see Fig. 2; Table 4).
Fig. 2.
Serial mediation model of the association between caregivers’ quality of life and caregivers’ supportive care needs through patients’ unmet care needs and symptom burden. Unstandardized path coefficients are shown. ap < 0.001, bp < 0.05
Table 4.
Coefficients of total, direct, and indirect effects predicting caregivers’ quality of life via caregivers’ supportive care needs, patients’ unmet care needs, and symptom burden
| Outcome variable: Patients’ Unmet Care Needsa | ||||
|---|---|---|---|---|
| Predictor | β | SE | t | p |
| Caregivers’ CQOLCc | -0.737 | 0.110 | -6.680 | < 0.001 |
| Caregivers’ Age | -0.320 | 0.163 | -1.962 | 0.052 |
| Model summary: F(2, 121) = 24.110, R² = 0.285,p < .001 | ||||
| Outcome variable: Patients’ Symptom Burdena | ||||
|---|---|---|---|---|
| Predictor | β | SE | t | p |
| Caregivers’ CQOLCc | -0.016 | 0.007 | -2.294 | 0.027 |
| Patients’ Unmet Care Needs | 0.037 | 0.005 | 7.107 | < 0.001 |
| Caregivers’ Age | -0.007 | 0.009 | -0.769 | 0.443 |
| Model summary: F(3, 120) = 34.482, R² = 0.463, p < .001 | ||||
| Outcome variable: Caregivers’ Supportive Care Needsa | ||||
|---|---|---|---|---|
| Predictor | β | SE | t | p |
| Caregivers’ CQOLCc | -0.019 | 0.002 | -7.315 | < 0.001 |
| Patients’ Unmet Care Needs | 0.006 | 0.002 | 2.931 | 0.004 |
| Patients’ Symptom Burden | 0.124 | 0.032 | 3.827 | < 0.001 |
| Caregivers’ Age | 0.001 | 0.003 | 0.483 | 0.629 |
| Model summary: F(4, 119) = 57.030, R² = 0.657, p < .001 | ||||
| Bootstrap Estimates (5,000 Resamples; 95% CIs) for the Total, Direct, and Indirect Effects | ||||
|---|---|---|---|---|
| Effect | Effect | SE | Lower CI | Upper CI |
| Total effect | -0.029 | 0.002 | -0.0351 | -0.0246 |
| Direct effect | -0.019 | 0.002 | -0.0249 | -0.0143 |
| Caregivers’ CQOLCᶜ → Patients’ Unmet Care Needs → Caregivers’ Supportive Care Needsᵇ | -0.004 | 0.003 | -0.0114 | 0.0001 |
| Caregivers’ CQOLCᶜ → Patients’ Symptom Burden → Caregivers’ Supportive Care Needsᵇ | -0.002 | 0.001 | -0.0056 | -0.0001 |
| Caregivers’ CQOLCᶜ → Patients’ Unmet Care Needs → Patients’ Symptom Burden → Caregivers’ Supportive Care Needsᵇ | -0.003 | 0.001 | -0.0063 | -0.0011 |
Boldfaced text indicates statistically significant values
aDependent variable
bIndirect effects
cCQOLC The Caregiver Quality of Life Index-Cancer
Discussion
This study investigated the impact of cancer patients’ unmet care needs and symptom burden on caregivers’ quality of life and supportive care needs, using a multiple and sequential mediation model. The findings were discussed under the following themes: patients’ symptom burden and unmet care needs; caregivers’ supportive care needs and quality of life; and the dyadic and reciprocal relationships between patients’ and caregivers’ care-related outcomes.
Patient symptom burden and unmet care needs
Our study revealed that patients generally experienced moderate symptom burden, with the highest average symptoms being fatigue and feeling unwell. The literature indicates that pain is the symptom that cancer patients find most difficult to manage [11, 37, 38]. In a study conducted by Hart et al. (2022), advanced cancer patients experienced symptoms such as fatigue, pain, and mobility issues and were unable to adequately manage these symptoms [12]. In a study by Tao et al. (2024), the prevalence of fatigue among breast cancer patients was reported as 84.4% when accompanied by depression and sleep disturbances [39]. Similarly, Hendy et al. (2025) found that 99.2% of patients undergoing chemotherapy experienced fatigue, 87.4% reported sleep disorders, and 93.3% exhibited depressive symptoms [40]. The findings of the present study are generally consistent with the existing literature. Our results indicate that fatigue in cancer patients may stem from multiple factors, including the treatment process, pain, psychological stress, and insomnia. Moreover, the sensation of feeling unwell appears to be significantly influenced by both psychological and physical symptoms.
Our study revealed that patients had high levels of unmet care needs and required the most care support in the area of “health system and information.” The findings of our study are similar to those in the literature [41–43]. The literature indicates that cancer patients have high needs for information and psychosocial support for various reasons, such as the treatment process, symptom management, healthcare system functioning, and emotional difficulties [44–46]. These findings may be explained by the complexity of treatment and care procedures involved in the home care process, which may be particularly challenging for patients with lower educational levels and older age profiles to comprehend.
Caregivers’ supportive care needs and quality of life
Our study identified that caregivers had high supportive care needs, with the most pressing need being access to accurate and comprehensive information. This aligns with previous research indicating that caregivers of cancer patients often require detailed guidance on issues such as symptom control, medication administration, treatment procedures, and personal care for the patient [13, 23]. A study conducted in Australia reported that the most frequently unmet needs of caregivers were access to treatment close to home, financial burden, concerns about the patient being cared for, and lack of access to healthcare personnel [47]. The findings of our study suggest that this issue may be influenced not only by individual caregiver-related factors—such as an unsuitable home environment, insufficient preparation for caregiving, limited time, or low motivation—but also by systemic challenges, including inadequacies in home health services and the inability of existing support systems to adequately address caregivers’ needs.
Our study revealed that caregivers’ quality of life was moderate. The aspect that most significantly impacted caregivers’ quality of life was the level of discomfort they experienced. A study involving caregivers of patients with oral cancer reported that their overall quality of life was relatively high [48]. In contrast, a systematic review found that caregivers of patients with pancreatic cancer experienced elevated levels of anxiety and depression, accompanied by poor quality of life [37]. Among caregivers providing home care to cancer patients, women were reported to experience higher rates of insomnia, emotional distress, and discomfort; however, the overall quality of life in this group was assessed as moderate [21]. Üzar-Özçetin et al. (2020) reported that individuals who care for cancer patients have a low quality of life, which directly affects their caregiving burden [27]. Our study findings show partial differences compared to those reported in the literature. We believe that this disparity stems from individual differences such as age, socioeconomic status, and duration of care of the caregiver, as well as the symptom burden of the patient. However, the finding that caregivers’ quality of life was moderate should not be interpreted as an indicator of well-being. Even when quality of life appears acceptable, it may deteriorate over time if caregivers’ needs for information, professional support, and counseling are not adequately addressed, as emphasized in the literature [21, 48].
The effects of patients’ unmet care needs and symptom burden on caregivers’ supportive care needs
Our study revealed that patients’ unmet care needs were positively associated with caregivers’ unmet care needs. A systematic study has shown that when the care needs of advanced cancer patients are not adequately met, the well-being of caregivers is negatively affected [12]. In Germany, higher unmet support needs among cancer patients were associated with higher support needs among caregivers [23]. In a cross-national study, it was found that patients receiving home care had greater physical and psychological care needs, which were associated with emotional burden and a greater need for information about care among caregivers [49]. Our study findings are similar to those in the literature [22–24]. These findings may be explained by cultural and structural factors, such as the frequent assumption of caregiving roles by female family members in Turkey and the inadequacy of formal support mechanisms [50]. Taken together, these findings are consistent with Hypothesis 1.
Similarly, our findings indicated that patients’ symptom burden was positively associated with caregivers’ unmet care needs. A study conducted in South Korea reported that cancer patients’ symptom burden and unmet care needs were associated with insufficient spiritual support, which negatively affected caregivers’ psychological resilience and increased their health- and emotion-related support needs [13]. Another study indicated that patients’ symptoms, such as pain, fatigue, nausea, and vomiting, not only increased caregivers’ psychological and support needs but also caused distress [12]. A study conducted in Turkey revealed that symptoms experienced by cancer patients, such as shortness of breath and pain, led to an increase in caregivers’ need for information and education [51]. Our findings are consistent with those reported in the literature. It can be inferred that the unmet needs of caregivers in our study were exacerbated by their continuous involvement in patient care and their limited knowledge of how to manage current or potential symptoms. In the Turkish context, the cultural expectation that caregiving should primarily be undertaken by family members is thought to heighten caregivers’ unmet needs and contribute to burnout. This is particularly evident in situations where caregivers receive insufficient training in symptom management and medication use, lack adequate counseling, and have limited access to psychological support from healthcare professionals [52]. These findings are also consistent with Hypothesis 2. At the same time, in line with the DCOF, this relationship may also be reciprocal. Caregivers’ unmet needs, limited preparedness, or insufficient support may adversely affect the care process and may also contribute to patients’ unmet needs and symptom experiences. This perspective highlights the dyadic and dynamic nature of supportive care in home-based palliative care.
Relationships between caregivers’ supportive care needs and quality of life, and the effects of these variables on patients
Our study revealed a significant association between declining caregivers’ quality of life and increased supportive care needs. This finding may also be interpreted in practical terms. Caregivers with poorer quality of life may have reduced coping capacity, greater emotional and physical vulnerability, and lower confidence in managing complex care demands at home. As a result, they may require greater informational, psychosocial, and professional support in order to sustain the caregiving role. In this sense, poorer caregiver quality of life may not only coexist with supportive care needs but may also directly intensify the perceived need for external support [16, 53]. The literature consistently highlights that when caregivers’ support needs are unmet, they are more likely to experience psychological issues such as anxiety and depression, which further deteriorate their quality of life [37, 48]. Although prior studies have often emphasized this reverse direction, our findings suggest that the relationship may also operate in the opposite direction, consistent with a reciprocal interpretation. However, studies supporting these findings remain limited within the national context. In Turkey, the prolonged duration of care for female caregivers of patients undergoing cancer treatment, the difficulty in managing patients’ symptoms, and the increased need for support systems contribute to a decline in the quality of life of these caregivers [54]. Our findings are similar to those of Kim et al. (2025) [13]. This may be explained by Turkey’s traditional family structure, in which caregiving responsibilities are predominantly assumed by women (e.g., wives and daughters). In addition to caregiving, women often carry multiple roles such as housework and childcare, which may limit their ability to seek professional support [55]. These findings are consistent with Hypothesis 3.
In the present study, caregivers’ supportive care needs were treated as the modeled outcome in the serial mediation analysis, whereas caregiver quality of life was specified as the independent variable and patients’ unmet care needs and symptom burden were modeled as sequential mediators. Within this analytic framework, the findings suggested that poorer caregiver quality of life was statistically linked to greater caregiver supportive care needs through patient-related factors. In line with methodological recommendations for mediation analysis in cross-sectional data, this analytic pathway should be interpreted as theory-informed rather than as evidence of definitive temporal or causal ordering [20, 56]. One study indicated that difficulties in symptom control and the complexity of managing treatment processes in cancer patients contribute to increased unmet needs among caregivers, negatively affecting both their psychological and physical well-being [57]. Another study highlighted that cancer patients’ experiences of anxiety and depression are associated with greater unmet needs among caregivers and a decline in their quality of life [23]. Although research directly reflecting our findings is scarce, existing literature points to indirect links between patients’ unmet care needs, symptom burden, and the well-being and support needs of caregivers [12, 27, 49]. In addition, most patients in our sample were in the ECOG 2–4 category, indicating impaired functional status. This may help explain the high supportive care needs observed among caregivers, as greater patient dependency is likely to intensify caregiving demands and place further strain on caregiver resources. Confinement to the home environment and the limited capacity for regular follow-up within the healthcare system may, in turn, adversely affect caregivers’ quality of life and supportive care needs. Owing to the inability to conduct regular follow-ups for home care within the healthcare system, caregivers do not receive adequate support [49]. This situation may adversely affect the quality of life of individuals providing home-based care for cancer patients [9]. The literature consistently underscores the necessity for structured, multidisciplinary programs led by home care professionals to address caregivers’ psychosocial and informational needs, which aligns closely with the core principles of palliative care [58]. Overall, these findings are consistent with Hypothesis 4.
At the same time, in line with the Dyadic Cancer Outcomes Framework, these associations should not be interpreted as exclusively unidirectional. The DCOF conceptualizes patient and caregiver experiences as interdependent, reciprocal, and dynamic rather than as isolated processes. Although the present study empirically tested one theory-informed analytic pathway within a cross-sectional design, the bidirectional links between patient and caregiver experiences remain conceptually plausible. Caregivers’ unmet needs, limited preparedness, or insufficient support may also adversely affect the care process and may contribute to patients’ unmet needs and symptom experiences. This perspective reinforces the dyadic and dynamic nature of supportive care in home-based palliative care [14].
In the multiple serial mediation analysis conducted in our study, a strong association was observed between caregivers’ quality of life (QoL) and patients’ unmet care needs. Within the tested analytic model, this finding suggests that caregiver well-being was closely related to patient-related care processes and caregiver supportive care needs. Evidence demonstrating similar directional associations remains limited in the literature. One study has shown that the quality of life of caregivers is directly associated with the quality of care they provide to their patients [59]. A study conducted with family caregivers of cancer patients highlighted patient needs that had a small but significant impact on caregivers’ quality of life [13]. In our study, the relatively stronger association may be explained by several contextual factors, including limited social support for caregivers, the intensity of economic and psychological burdens, high levels of responsibility, and the challenges associated with providing care at home. Rather than implying definitive causal direction, these findings indicate that declines in caregivers’ quality of life were statistically linked with patient unmet needs within the broader dyadic care context [20]. This finding suggests that supportive interventions targeting caregivers within clinical practice may influence not only caregivers’ individual well-being but also patients’ care outcomes, reflecting the interdependent nature of care in home-based settings. Therefore, the development and implementation of structured home care support programs incorporating multidisciplinary approaches should be prioritized.
In our multiple mediation analysis, although the β coefficients for the relationships between caregivers’ quality of life and patients’ symptom burden as well as caregivers’ supportive care needs were low, they were found to be statistically significant. Consistent with our findings, previous research has shown that the unmet needs and daily functioning of both patients and caregivers exert a low yet statistically significant effect on caregivers’ quality of life [60]. Another study found that patients’ symptom burden had an impact on caregivers’ quality of life [61]. However, the body of literature directly supporting these specific pathways remains limited. Individual and clinical variables of both patients and caregivers may have attenuated this relationship, resulting in relatively small effect sizes. However, as noted in the literature, even values considered to represent a “small effect” may accumulate over time in the caregiving process and have the potential to lead to substantial changes [62]. Therefore, early supportive interventions targeting caregivers, together with the strengthening of home-based care services, may prevent these small effects from accumulating into more serious adverse outcomes over time.
Conclusion
In conclusion, this study revealed that patients receiving home-based palliative care and their caregivers experience interconnected and mutually influential needs across multiple domains. The findings underscore the frequently neglected needs of individuals caring for cancer patients receiving home-based palliative care and highlight the necessity of adopting patient- and caregiver-centered, holistic approaches that address both physical and psychosocial dimensions of care in health service planning. Furthermore, the results provide valuable guidance for the reformation of health policies and the development of more responsive and integrated service delivery models, particularly within home-based palliative care services.
Based on the findings of this study, holistic support programs should be developed to address the needs of caregivers in the home-based palliative care process. In this regard, forming multidisciplinary palliative home care teams—including physicians, nurses, and counselors—is crucial, with an emphasis on specialized training in effective communication, emotional support, and counseling tailored to caregivers’ needs. Nurses should play a pivotal role in this process by offering educational resources such as brief instructional videos, printed materials, and personalized guidance sessions for both patients and their caregivers. In addition, there is a strong need to develop proactive and supportive interventions, particularly those focusing on home-based palliative care services, to prevent early challenges in the caregiving process from progressing into more serious consequences.
Limitations and strengths
This study explored the interrelationships among quality of life, symptom burden, and unmet care needs in cancer patients receiving home-based palliative care and their caregivers, offering a multifaceted analysis that reveals the direct influence of these variables on the home-based palliative care process. A key strength of the study is its integrative approach, which simultaneously considers the experiences of both patients and caregivers within a dyadic framework. This methodology yields original, field-based data that contribute to the growing relevance of home-based palliative care services within the healthcare system. Accordingly, the findings provide evidence-based guidance for the planning and enhancement of home-based palliative care services and caregiver support structures.
However, the study is subject to certain limitations. Its cross-sectional design precludes causal inference, allowing only for associations to be identified. Additionally, the single-center sample limits the generalizability of the findings to broader populations of patients receiving home-based palliative care and their caregivers. Because the study focused specifically on home-based palliative care, conducting the research in the home environment was contextually appropriate. However, variability across home environments may have reduced standardization during data collection and may have influenced comparability across participants. Moreover, the non-randomized sampling method introduced methodological limitations, including selection bias and recall bias. Therefore, further research involving larger sample sizes, conducted across diverse regions, and employing longitudinal study designs is necessary to validate and expand upon these findings within home-based palliative care settings.
Supplementary Information
Authors’ contributions
Conceptualization: M.T., U.Ö., K.Y., Ş.Ö., S.B.; Methodology: M.T., U.Ö.; Formal analysis and investigation: M.T., U.Ö., K.Y.; Writing - original draft preparation: M.T., U.Ö., K.Y., Ş.Ö., S.B.; Writing - review and editing: M.T., U.Ö., K.Y., Ş.Ö., S.B.; Resources: M.T., U.Ö., K.Y., Ş.Ö., S.B.; Supervision: U.Ö., K.Y. All authors reviewed the manuscript.
Funding
The authors did not receive support from any organization for the submitted work.
Data availability
The datasets generated and/or analyzed during the current study are not publicly available due to ethical restrictions but are available from the corresponding author on reasonable request.
Declarations
Ethics approval and consent to participate
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The study was approved by the Non-Interventional Ethics Committee of Dokuz Eylul University in Turkiye (Approval no: 2021/22 − 16, Dated:28.07.2021). Informed consent was obtained from all individual participants included in the study.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
References
- 1.Shahriari M, Nia DH, Kalij F, Hashemi MS. Challenges of home care: a qualitative study. BMC Nurs. 2024;23(1). 10.1186/s12912-024-01878-0. [DOI] [PMC free article] [PubMed]
- 2.Choi JY, Lee SH, Yu S. Exploring Factors Influencing Caregiver Burden: A Systematic Review of Family Caregivers of Older Adults with Chronic Illness in Local Communities. Healthcare. 2024;12(10):1002. 10.3390/healthcare12101002. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Determeijer JJ, Van Waard JD, Leopold SJ, Spijker R, Agyemang C, Vugt MV. The barriers and facilitators family caregivers experience when participating in resource-limited hospital care: a qualitative systematic review. BMJ Global Health. 2024;9(11):e015956. 10.1136/bmjgh-2024-015956. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Sahin F, Sahin FS, Ozkaraman A. Family Peace and Affecting Factors in Family Caregivers of Patients With Cancer: A Cross-Sectional Study. J Palliat Care. 2025;40(1):28–40. 10.1177/08258597241282999. [DOI] [PubMed] [Google Scholar]
- 5.Liu X, Liu H, Ying W, Zhang Y, Gong X, Huang J. Identifying palliative home care needs of patients with advanced cancer: a cross-sectional study. Front Psychiatry. 2025;16. 10.3389/fpsyt.2025.1448973. [DOI] [PMC free article] [PubMed]
- 6.Breuning M, Mählmann S, Kerek-Bodden H, Oettlin S, Weis J. Family Caregivers of Cancer Patients: Burdens and Support Preferences of Partner, Parent and Adult‐Child Caregivers. Psycho-oncology. 2024;33(9). 10.1002/pon.9310. [DOI] [PubMed]
- 7.Ulgen T, Uğur Ö. Home care practices of cancer caregivers and the effect of perceived social support on care burden. Support Care Cancer. 2022;30(10):8323–32. 10.1007/s00520-022-07266-1. [DOI] [PubMed] [Google Scholar]
- 8.Miranda KW, Musher BL, Badr HJ. Unmet supportive care needs in patients with advanced cancer and its impact on distress. BMC Palliat Care. 2025;24(1):110. 10.1186/s12904-025-01746-x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Aslan Ş, Uyar S, Güzel Ş. Home health care servıces practıce ın Turkey. J Social Res Manage 2018(1):45–56. 10.35375/sayod.520957
- 10.Daver T. Home Healthcare Services in Turkey: Legislation, Implementation and Availability. Aydın Health J. 2022;8(2):71–85. [Google Scholar]
- 11.Cox-Seignoret K, Maharaj RG. Unmet needs of patients with cancer in their last year of life as described by caregivers in a developing world setting: a qualitative study. BMC Palliat Care. 2020;19(1). 10.1186/s12904-020-0516-4. [DOI] [PMC free article] [PubMed]
- 12.Hart NH, Crawford-Williams F, Crichton M, Yee J, Smith TJ, Koczwara B, Fitch MI, Crawford GB, Mukhopadhyay S, Mahony J, et al. Unmet supportive care needs of people with advanced cancer and their caregivers: A systematic scoping review. Crit Rev Oncol Hematol. 2022;176:103728. 10.1016/j.critrevonc.2022.103728. [DOI] [PubMed] [Google Scholar]
- 13.Kim J, Lee S. The effect of unmet needs on the health-related Quality of life of family caregivers of cancer patients in South Korea. PLoS ONE. 2025;20(5):e0321900. 10.1371/journal.pone.0321900. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Thompson T, Ketcher D, Gray TF, Kent EE. The Dyadic Cancer Outcomes Framework: A general framework of the effects of cancer on patients and informal caregivers. Soc Sci Med. 2021;287:114357. 10.1016/j.socscimed.2021.114357. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Taurisano P, De Feudis RL, Graziano G, Marzano N, Curci A, Fidanzio A, Annunziata MA, Antinone V, Brovelli S, Carone M, et al. Patient-caregiver relationship in cancer fatigue and distress. A dyadic approach. Curr Psychol. 2023;42(32):28167–79. 10.1007/s12144-022-03860-y. [Google Scholar]
- 16.Bakker EM, Witkamp FE, Luu KLN, van Dongen SI, Raijmakers NJH, van Roij J, van der Heide A, Rietjens JAC. Caregiver activation of relatives of patients with advanced cancer. Eur J Cancer Care. 2022;31(6):e13656. 10.1111/ecc.13656. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Hudson P, Francis J, Cohen J, Kapp S, De Abreu Lourenco R, Beatty L, Gray K, Jefford M, Juraskova I, Northouse L, et al. Improving the Well-Being of People With Advanced Cancer and Their Family Caregivers: Protocol for an Effectiveness-Implementation Trial of a Dyadic Digital Health Intervention (FOCUSau). JMIR Res Protocols. 2024;13:e55252. 10.2196/55252. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Thompson T, Rodebaugh TL, Haun P, Han K, Ramchander N, Chauhan K, Meads J, Margenthaler JA, Glover-Collins K, Colditz GA. Longitudinal Dyadic Analysis of Psychosocial and Health Outcomes in Black Breast Cancer Patients and Their Informal Caregivers. Cancer Control. 2025;32:10732748251362950. 10.1177/10732748251362950. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Fairchild AJ, McDaniel HL. Best (but oft-forgotten) practices: mediation analysis. Am J Clin Nutr. 2017;105(6):1259–71. 10.3945/ajcn.117.152546. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Maxwell SE, Cole DA. Bias in cross-sectional analyses of longitudinal mediation. Psychol Methods. 2007;12(1):23–44. 10.1037/1082-989X.12.1.23. [DOI] [PubMed] [Google Scholar]
- 21.Genaro LE, Marconato JV, Valsecki Júnior A, Adas Saliba T, Rosell FL. Home Caregivers of Elderly People: Perceptions and Quality of Life. Geriatrics. 2025;10(3):61. 10.3390/geriatrics10030061. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Driessen HPA, Busschbach JJV, Van Der Rijt CCD, Elfrink EJ, Raijmakers NJH, Van Roij J, Rietjens J, Kranenburg LW. Unmet care needs of patients with advanced cancer and their relatives: multicentre observational study. BMJ Supportive Palliat Care. 2024;14(e1):e1413–21. 10.1136/spcare-2023-004242. [DOI] [PubMed] [Google Scholar]
- 23.Sklenarova H, Krümpelmann A, Haun MW, Friederich HC, Huber J, Thomas M, Winkler EC, Herzog W, Hartmann M. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer. 2015;121(9):1513–9. 10.1002/cncr.29223. [DOI] [PubMed] [Google Scholar]
- 24.Wang T, Molassiotis A, Chung BPM, Tan J-Y. Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat Care. 2018;17(1). 10.1186/s12904-018-0346-9. [DOI] [PMC free article] [PubMed]
- 25.Vandenbroucke JP, von Elm E, Altman DG, Gotzsche PC, Mulrow CD, Pocock SJ, Poole C, Schlesselman JJ, Egger M, Initiative S. Strengthening the Reporting of Observational Studies in Epidemiology (STROBE): explanation and elaboration. Epidemiology. 2007;18(6):805–35. 10.1097/EDE.0b013e3181577511. [DOI] [PubMed] [Google Scholar]
- 26.Cheng Q, Ng MSN, Choi KC, So WKW. Unmet needs, anxiety, depression, and quality of life among caregivers of adolescents and young adults with cancer: A cross-sectional study. Asia-Pacific J Oncol Nurs. 2022;9(10):100108. 10.1016/j.apjon.2022.100108. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.Uzar-Ozcetin YS, Dursun SI. Quality of life, caregiver burden, and resilience among the family caregivers of cancer survivors. Eur J Oncol Nurs. 2020;48:101832. 10.1016/j.ejon.2020.101832. [DOI] [PubMed] [Google Scholar]
- 28.Despiégel N, Touboul C, Flinois A, Saba G, Suzan F, Gonzalez-Mcquire S, Bonnetain F. Health-Related Quality of Life of Patients With Multiple Myeloma Treated in Routine Clinical Practice in France. Clin Lymphoma Myeloma Leuk. 2019;19(1):e13–28. 10.1016/j.clml.2018.08.019. [DOI] [PubMed] [Google Scholar]
- 29.Yesilbalkan ÖU, Özkütük N, Karadakovan A, Turgut T, Kazgan B. Validity and reliability of the Edmonton Symptom Assessment Scale in Turkish cancer patients. Turkish J Cancer. 2008;38(2):62. [Google Scholar]
- 30.Aksuoğlu A, Şenturan L. Validity and Reliability Study of the Supportive Care Needs Survey. Turkiye Klinikleri J Med Sci. 2016;36(3):121–9. 10.5336/medsci.2016-51865. [Google Scholar]
- 31.McElduff P, Boyes A, Zucca A, Girgis A. Supportive Care Needs Survey: A guide to administration, scoring and analysis. Newcastle: Centre Health Res Psycho-oncology 2004:2–54.
- 32.Ergen M, Arikan F. Psychometric validation of the Turkish version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C-T) of cancer patients. Eur J Cancer Care (Engl). 2020;29(1):e13177. 10.1111/ecc.13177. [DOI] [PubMed] [Google Scholar]
- 33.Girgis A, Lambert S, Lecathelinais C. The supportive care needs survey for partners and caregivers of cancer survivors: development and psychometric evaluation. Psychooncology. 2011;20(4):387–93. 10.1002/pon.1740. [DOI] [PubMed] [Google Scholar]
- 34.Weitzner MA, Jacobsen PB, Wagner H Jr., Friedland J, Cox C. The Caregiver Quality of Life Index-Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res. 1999;8(1–2):55–63. 10.1023/a:1026407010614. [DOI] [PubMed] [Google Scholar]
- 35.Yakar HK, Pınar R. Evaluation of quality of life among family caregivers of patients with cancer. Turkish J Res Dev Nurs. 2013;15(2). 10.69487/hemarge.695691.
- 36.Coutts JJ, Hayes AF. Questions of value, questions of magnitude: An exploration and application of methods for comparing indirect effects in multiple mediator models. Behav Res Methods. 2022;55(7):3772–85. 10.3758/s13428-022-01988-0. [DOI] [PubMed] [Google Scholar]
- 37.Chong E, Crowe L, Mentor K, Pandanaboyana S, Sharp L. Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer. Support Care Cancer. 2022;31(1):74. 10.1007/s00520-022-07468-7. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 38.Moseholm E, Lindhardt BO. Patient characteristics and cancer prevalence in the Danish cancer patient pathway for patients with serious non-specific symptoms and signs of cancer-A nationwide, population-based cohort study. Cancer Epidemiol. 2017;50(Pt A):166–72. 10.1016/j.canep.2017.08.003. [DOI] [PubMed] [Google Scholar]
- 39.Tao L, Lv J, Zhong T, Zeng X, Han M, Fu L, Chen H. Effects of sleep disturbance, cancer-related fatigue, and psychological distress on breast cancer patients’ quality of life: a prospective longitudinal observational study. Sci Rep. 2024;14(1). 10.1038/s41598-024-59214-0. [DOI] [PMC free article] [PubMed]
- 40.Hendy A, Ibrahim RK, Darwish A, Al Sabbah S, Shalby AYM, Khubrani R, Alawad AE, Abdelaliem SMF, Wahba NMI. Sleep disturbance, cancer-related fatigue, and depression as determinants of quality of life among breast cancer patients undergoing chemotherapy: a cross-sectional study. BMC Cancer. 2025;25(1). 10.1186/s12885-025-14538-6. [DOI] [PMC free article] [PubMed]
- 41.Choi E, Kim SH, Lee YW, Kim H, Shim YM, Lee G, Volker DL. Supportive Care Needs and Health-Related Quality of Life of Esophageal Cancer Survivors. Asia Pac J Oncol Nurs. 2021;8(2):164–71. 10.4103/apjon.apjon_60_20. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 42.Driessen HPA, Kranenburg LW, Van Der Rijt KCD, Bakker EM, Van Busschbach JJ, Jabbarian LJ, Bramer WM, Elfrink EJ. Evaluation of centers for information and support combining formal and informal care for patients with cancer: a systematic review of the literature. Support Care Cancer. 2022;30(9):7079–98. 10.1007/s00520-022-07047-w. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 43.Springer F, Mehnert-Theuerkauf A, Gebhardt C, Stolzenburg J-U, Briest S. Unmet supportive care needs among cancer patients: exploring cancer entity-specific needs and associated factors. J Cancer Res Clin Oncol. 2024;150(4). 10.1007/s00432-024-05715-4. [DOI] [PMC free article] [PubMed]
- 44.Roberts NA, Esler R, Pearce A, Wyld D, Smith M, Woollett K, Mazariego C, Roberts MJ. Exploring Unmet Needs in Prostate Cancer Care: A Cross-sectional Descriptive Study. Eur Urol Open Sci. 2024;62:36–42. 10.1016/j.euros.2024.01.018. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 45.Ren JY, Zhong JD, Yuan J, Zhang JE, Li CZ, Wei WJ. Unmet supportive care needs and associated factors among Chinese discharged patients with esophageal cancer after esophagectomy: A cross-sectional study. Eur J Oncol Nurs. 2020;46:101767. 10.1016/j.ejon.2020.101767. [DOI] [PubMed] [Google Scholar]
- 46.Erdogan Yuce G, Doner A, Muz G. Psychological Distress and Its Association with Unmet Needs and Symptom Burden in Outpatient Cancer Patients: A Cross-Sectional Study. Semin Oncol Nurs. 2021;37(5):151214. 10.1016/j.soncn.2021.151214. [DOI] [PubMed] [Google Scholar]
- 47.Stiller A, Goodwin BC, Crawford-Williams F, March S, Ireland M, Aitken JF, Dunn J, Chambers SK. The Supportive Care Needs of Regional and Remote Cancer Caregivers. Curr Oncol. 2021;28(4):3041–57. 10.3390/curroncol28040266. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 48.Ahmad AS, Doss JG, Ismail SM, Chen Kiong S, Jelon MA, Thangavalu L, Lay Ling C. Quality of Life vs. Supportive Care Needs for Oral Cancer Caregivers: Are They Related? Curr Oncol. 2023;30(2):1733–44. 10.3390/curroncol30020134. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 49.Akgun-Citak E, Attepe-Ozden S, Vaskelyte A, van Bruchem-Visser RL, Pompili S, Kav S, Acar S, Aksoydan E, Altintas A, Aytar A, et al. Challenges and needs of informal caregivers in elderly care: Qualitative research in four European countries, the TRACE project. Arch Gerontol Geriatr. 2020;87:103971. 10.1016/j.archger.2019.103971. [DOI] [PubMed] [Google Scholar]
- 50.Aslan Ş, Uyar S, Güzel Ş. Home health care services practice in Turkey. J Social Res Manage 2018(1):45–56. 10.35375/sayod.520957
- 51.Yıldırım NKA, Özkan M. Cancer Patıents’ Relatıves/ Caregıvers: Theır Experıences And Needs. Ege Univ J Nurs Fac. 2015;31(2):98–112. [Google Scholar]
- 52.Polat Ü, Atamer B. Care burden and unmet care needs of caregıvers of cancer patıents receıvıng pallıative care. Gazi J Health Sci. 2020;5(2):38–47. [Google Scholar]
- 53.Morgan SP, Lengacher CA, Rodriguez CS. Caregiver burden in caregivers of patients with advanced stage cancer: A concept analysis. Eur J Oncol Nurs. 2022;60:102152. 10.1016/j.ejon.2022.102152. [DOI] [PubMed] [Google Scholar]
- 54.Keles MN, Salameh T, Seven M. Quality of Life of Caregivers of Women Receiving Cancer Treatment in Turkey. Florence Nightingale J Nurs. 2023;31(Supp1):S31–7. 10.5152/FNJN.2023.22235. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 55.Çelik A, Temeltaş G. A neglected problem ın caregıvers of cancer patıents: Supportıve care needs. Health Res J. 2024;10(2):80–91. 10.12681/healthresj.34637. [Google Scholar]
- 56.Gunzler D, Chen T, Wu P, Zhang H. Introduction to mediation analysis with structural equation modeling. Shanghai Arch Psychiatry. 2013;25(6):390–4. 10.3969/j.issn.1002-0829.2013.06.009. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 57.Ashrafian S, Feizollahzadeh H, Rahmani A, Davoodi A. The Unmet Needs of the Family Caregivers of Patients with Cancer Visiting a Referral Hospital in Iran. Asia-Pacific J Oncol Nurs. 2018;5(3):342–52. 10.4103/apjon.apjon_7_18. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 58.Aoun SM, Grande G, Howting D, Deas K, Toye C, Troeung L, Stajduhar K, Ewing G. The Impact of the Carer Support Needs Assessment Tool (CSNAT) in Community Palliative Care Using a Stepped Wedge Cluster Trial. PLoS ONE. 2015;10(4):e0123012. 10.1371/journal.pone.0123012. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 59.Hazzan AA, Dauenhauer J, Follansbee P, Hazzan JO, Allen K, Omobepade I. Family caregiver quality of life and the care provided to older people living with dementia: qualitative analyses of caregiver interviews. BMC Geriatr. 2022;22(1). 10.1186/s12877-022-02787-0. [DOI] [PMC free article] [PubMed]
- 60.Crisà E, Cilloni D, Riva M, Balleari E, Barraco D, Manghisi B, Borin L, Calmasini M, Calvisi A, Capodanno I, et al. Unmet Needs and Their Impact on Quality of Life and Symptoms in Myelodysplastic Neoplasm Patients and Caregivers. Cancers. 2025;17(9):1587. 10.3390/cancers17091587. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 61.Nielsen IH, Tolver A, Piil K, Kjeldsen L, Gronbaek K, Jarden M. Family caregiver quality of life and symptom burden in patients with hematological cancer: A Danish nationwide cross-sectional study. Eur J Oncol Nurs. 2024;69:102538. 10.1016/j.ejon.2024.102538. [DOI] [PubMed] [Google Scholar]
- 62.Primbs P MA, Pennington CR, Lakens D, Silan MAA, Lieck DSN, Forscher PS, Buchanan EM, Westwood SJ. Are Small Effects the Indispensable Foundation for a Cumulative Psychological Science? A Reply to Götz et al. (2022). Perspect Psychol Sci. 2023;18(2):508–12. 10.1177/17456916221100420. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The datasets generated and/or analyzed during the current study are not publicly available due to ethical restrictions but are available from the corresponding author on reasonable request.