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Psychological Distress, Quality of Life and Supportive Care Needs among Informal Cancer Caregivers
*Corresponding author: Qutouf Ahmed Al Kindi, Department of Psychology, Eunoia Clinic, Musact, Oman. qutoufalkindi@eunoiaclinic.com
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Received: ,
Accepted: ,
How to cite this article: Al Kindi QA, Al Musalami A, Sultan A. Psychological Distress, Quality of Life and Supportive Care Needs among Informal Cancer Caregivers. Indian J Palliat Care. 2025;31:311-20. doi: 10.25259/IJPC_148_2025
Abstract
Objectives:
This study aims to investigate the impact of psychological distress, quality of life (QoL) and unmet supportive care needs on the burden experienced by cancer caregivers in Oman. Given the limited research in the Omani community, there is a need to explore these factors comprehensively. This study aims to assess the prevalence of psychological distress, QoL and unmet supportive care needs among cancer caregivers while identifying associated factors.
Materials and Methods:
A cross-sectional study involving 144 informal cancer caregivers was conducted. Psychological distress, QoL and unmet supportive care needs were assessed using the depression anxiety stress scales, the Caregiver QOL Index–Cancer and the Supportive Care Needs Survey-Partners and Caregivers Survey, respectively. Interrelationships were examined using hierarchical multivariable linear regression.
Results:
Caregivers demonstrated significant levels of stress, anxiety and depression, with rates exceeding clinical cut-offs at 77.8%, 68.1% and 71.5% respectively. The mean QoL score was 78.99, with 74.3% scoring between fair and poor QoL. In addition, 86.8% reported experiencing 5 or more unmet care needs, primarily within the psychological/emotional and healthcare domains. There was significant but weak evidence suggesting that gender and patient age might influence anxiety scores, with male caregivers and older cancer patients exhibiting a decreased risk of high anxiety scores among caregivers.
Conclusion:
The study highlights the significant psychological distress, diminished QoL and prevalence of unmet supportive care needs among cancer caregivers in Oman. These findings emphasise the urgent need for tailored support systems to address their specific needs. Implementing initiatives aimed at alleviating the psychological challenges encountered by cancer caregivers is crucial.
Keywords
Cancer caregivers
Psychological distress
Quality of life
Unmet supportive care needs
INTRODUCTION
Cancer diagnosis profoundly impacts both the patients and the caregivers. Caregivers, defined as those providing primary care and assuming responsibility for the diagnosed individual throughout their illness, treatment and recovery.[1] They offer crucial emotional and social support and contribute significantly to disease management. The shifting roles and increased responsibilities caregivers face can impose considerable emotional and physical burdens on caregivers globally.[2]
Recent research has shed light on the emotional and psychological burdens experienced by those following a cancer diagnosis in their family or friends.[3,4] Studies indicate that caregivers of cancer patients often experience higher levels of psychological distress,[5] anxiety[6] and depression,[2] coupled with lower quality of life (QoL).[7,8] Furthermore, evidence suggests that cancer caregivers may encounter significant unmet supportive care needs compared to cancer patients[9,10] across various domains, including clinical information, healthcare services, daily living and psychological support.
The burden experienced by caregivers is hypothesised to directly affect the patient’s clinical outcomes.[11] Research suggests that enhancing caregivers’ resilience and perceived psychosocial support can positively impact patients’ resilience.[12] Given the vital role caregivers play in patients’ recovery and disease management, they should be integral to care plans. However, understanding the specific demographic needs and prevalence rates specific to the Middle East and the Sultanate of Oman is essential to tailor a support system effectively.
Studies conducted in the Middle East suggest a high prevalence of psychological problems among cancer caregivers.[13,14] In Saudi Arabia, it was found that 8 out of 10 hospitalised cancer caregivers experienced clinical levels of distress, anxiety and depression.[15] QoL was also found to be low.[14,16] However, most research in the Middle East has focused on cancer patients’ supportive needs rather than caregivers’.[17-19]
According to the recent National Cancer Registry in the Sultanate of Oman, a total of 2,198 tumours were recorded. Among these, 1,994 cases (90.7%) were Omanis, 191 cases (8.7%) were non-Omanis, and only 13 cases (0.6%) were carcinoma in situ. Among Omanis, males constituted 930 cases (44.57%), while females accounted for 1,064 cases (55.43%). Breast cancer was the most prevalent cancer among Omanis, followed by thyroid cancer and colorectal cancer, respectively.[20]
Recent studies conducted in the Sultanate of Oman explored the burden of primary caregivers of children with Cancer.[21] The study identified demographic factors such as education and age to be significantly related to caregiver burden, which included financial, psychological and physical factors. Another study conducted in 2022 explored the factors contributing to the unmet needs of primary caregivers of Omani children diagnosed with leukaemia.[22] Results revealed that the longer the time during which the child struggled with leukaemia, the higher the burden of taking care of the child, leading to increased risk of depression, anxiety and social isolation.
Another study conducted from November 2020 to February 2021 evaluated the unmet supportive care needs of Omani women diagnosed with breast cancer.[17] The study concluded that the most unmet supportive care needs fell under the healthcare system and information domain. Thus, it is recommended that healthcare providers in Oman explore patient concerns and provide information at different stages of the care process to decrease the anxiety associated with living with cancer.
While the above studies provide data and information on the current struggles faced by caregivers, they are mostly specific to certain types of cancer or a specific group of individuals. Limited studies have sought to evaluate overall factors influencing caregiver emotional health and the need for ongoing emotional support in the Sultanate of Oman. This study aims to examine the prevalence of psychological distress, QoL, and unmet supportive care needs in cancer caregivers and determine the factors contributing to the variance of the prevalence of psychological distress in cancer caregivers. Based on the results, this study will also propose routes of care and support relevant to caregivers of patients diagnosed with cancer.
MATERIALS AND METHODS
Study design
An exploratory, cross-sectional study was conducted at the National Oncology Center-Royal Hospital involving both inpatients’ wards and outpatients’ clinic. Approval for this study was obtained from the Research and Ethical Review and Approval Committee of the Royal Hospital - Ministry of Health (ref: SRC:74/2022). Before participation, all individuals provided written informed consent. The study employed an online self-reported survey for data collection.
Participants and methods
The survey was distributed to 200 conveniently selected cancer caregivers in the hospital. Of these, 158 informal caregivers of cancer patients returned completed questionnaires, resulting in a 97% response rate.
A total of 144 caregivers, aged 18–70 years (mean age = 37.05; standard deviation = 11.09), met the study criteria and were included in the analysis. Fourteen participants were excluded due to one or more of the following reasons: lack of consent, caregiver not being a direct relative, survey completed by the patient instead of the caregiver, absence of a current cancer diagnosis, patient’s death or caregiver being under 18 years of age.
Inclusion criteria required caregivers to be aged 18 or older, native Arabic speakers, Omani nationals and caring for a cancer patient not at the end-of-life stage. Caregivers with severe cognitive impairment or active or past psychiatric illness were excluded from the study.
Recruitment took place between November 2022 and March 2023. Participation was voluntary, and eligible caregivers were approached in the inpatient wards, outpatient clinics and daycare unit at the oncology centre of the Royal Hospital.
Study tools
Depression anxiety stress scales (DASS) - Arabic
The DASS is a brief measure of depression, anxiety and stress symptoms in adults. It consists of 21 self-rated items on a 4-point Likert scale ranging from ‘Did not apply to me at all’ to ‘Applied to me very much or most of the time.’ According to the guidelines of score interpretation, it yields three subscale scores with recommended cut-off scores for conventional severity labels of normal, mild, moderate, severe and extremely severe.[23, 24] Psychometric properties in Arabic clinical and non-clinical samples have been found to be high, with Cronbach’s alphas ranging from 0.80 to 0.94 for the overall scale.[25] In the present study, Cronbach’s coefficient was α = 0.89.
Caregiver QoL Index–Cancer (CQOLC)
The CQOLC is a self-report tool designed to assess QoL in cancer caregivers. It consists of 35 items with responses ranging from ‘not at all’ to ‘very much’, yielding a maximum possible score of 140. The CQOLC includes a total score and four subscales: burden (10 items), disruptiveness (7 items), positive adaptation (7 items) and financial concerns (3 items), with the remaining eight items not loading on one of these subscales. Seven items of positive adaptation, along with items 4 and 23 of the scale, were reverse-coded. The CQOLC overall score is obtained by adding the 35-item scores, and the score for each domain is determined by adding the associated domain item scores.[26] Higher scores indicate lower QoL, with the total score categorised into three groups: Good QoL (scores 0–45), fair QoL (scores 46–90) and poor QoL (scores 91–140). The CQOLC was selected due to its high psychometric properties, with a test–retest reliability of 0.95 and internal consistency of 0.91.[26] The Survey was translated and back-translated into Arabic, and our data showed adequate internal reliability with a Cronbach’s coefficient alpha of α = 0.89. One item was missing due to a survey entry error; however, the corrected total-item correlation showed a Cronbach’s coefficient alpha of α = 0.84, which did not violate the reliability of the tool.
Supportive care needs survey-partners and caregivers survey (SCNS-P&C)
The SCNS-P&C was developed to assess the multidimensional supportive care needs of cancer caregivers across the illness trajectory. This instrument comprises 45 items divided into four subscales: information needs (7 items), healthcare service needs (12 items), psychological and emotional needs (16 items), legal/financial needs (3 items), daily living (4 items) and communication and interpersonal (4 items).[27] Responses are on a 5-point Likert scale ranging from ‘No Need’ to ‘High Need’, yielding a possible total score ranging from 0 to 45, with higher scores representing more supportive care needs. For individual items, scores were recorded as 0 for ‘no/met need’ and 1 for ‘unmet need’. The instrument demonstrated good internal consistency, with Cronbach’s alpha ranging from 0.88 to 0.94 for the four subscales,[27] while the present data showed excellent internal reliability with a Cronbach’s coefficient alpha of α = 0.98.
Translation
We acknowledge the existence of a previously published Arabic version of the CQOLC (Araki MMA, 2019).[28] However, we opted to undertake a new translation for the following reasons: The version by Araki et al. was not publicly available for access or formal permission for use.[28]
To ensure cultural appropriateness specific to our study population in Oman, we aimed to develop a version that was linguistically aligned with local dialect and idioms and contextually relevant to caregivers within an Arab Gulf setting. Permission was taken from Weitzner et al.[26] and Girgis et al.[27] to translate and use CQOLC and SCNS-P&C, respectively. Both forward translators were bilingual researchers, fluent in both Arabic and English, with clinical and academic experience in palliative care. Their bilingual proficiency ensured linguistic and contextual accuracy during forward translation.
The back translation was performed by a native English speaker who had advanced fluency in Arabic (CEFR C2 level). This individual had prior experience working in health research within Arab countries and was independent from the original forward translators, thus minimising translation bias. The interim Arabic version of the CQOLC underwent consensus review by all contributing authors. Following this, the draft Arabic version was pilot-tested with 10 informal caregivers of cancer patients at the Royal Hospital (not included in the final study sample). No significant content changes were needed, and participants reported that the tool was understandable and acceptable in terms of both language and cultural context.
Statistical analysis
Data analyses were undertaken using STATA - StataCorp (Version 17.0). An exploratory normality analysis was performed on all variables. Shapiro–Wilk tests and histograms indicated that some datasets violated the normality assumption (P < 0.05). Therefore, non-parametric tests were chosen for the non-descriptive and non-prevalence analyses between variables. An alpha level of 0.05 was maintained throughout the analysis. Mann–Whitney U test was used to assess the differences in psychological distress, and a hierarchical multivariable linear regression was conducted to predict the variance in the psychological distress rates. Linear multivariable regression was employed to examine the association between caregiver depression scores (dependent variable) and multiple sociodemographic and caregiving-related factors (independent variables), while controlling for potential confounders. This method was selected as it allows the assessment of the independent effect of each predictor on a continuous outcome, providing adjusted estimates that account for the influence of other variables.
RESULTS
Demographic data
The study sample included 144 cancer caregivers, with more than half of the sample being women (58.3%). Most participants were married (64.6%) and had a post-high school level of education (57%). The majority of the sample had been taking care of the cancer patient for between 1 and 5 years (86.1%). Most cancer patients were above 18 years old (131, 91%). A total of 122 (84.8%) were first-degree relatives of the patients. Only 26.4% of the participants were the sole caregivers to cancer patients, and 40.3% were living with the cancer patient. The most prevalent types of cancers in our sample were breast cancer (28.4%), followed by colorectal cancer (14.8%) and gastric cancer (10.4%) [Table 1].
| Caregiver characteristics | n | % |
|---|---|---|
| Age (years) | Range: 18–70 | |
| Mean (SD) | 37.05 (11.09) | |
| Gender | ||
| Male | 52 | 41.7 |
| Female | 84 | 58.3 |
| Relationship to patient | ||
| Parent (Mother/Father-in-law) | 18 | 12.5 |
| Child (Son/Daughter) | 68 | 47.2 |
| Sibling (Brother/Sister/Sibling-in-law) | 27 | 18.8 |
| Spouse (Husband/Wife) | 20 | 13.9 |
| Extended family (Uncle, Niece, Nephew, Grandchild, Son-in-law) | 13 | 9.0 |
| Friend/Not Disclosed | 2 | 1.4 |
| Marital status | ||
| Married | 93 | 64.6 |
| Not married | 42 | 29.2 |
| Divorced | 5 | 3.5 |
| Widowed | 3 | 2.1 |
| Educational level | ||
| No Schooling/Primary | 7 | 4.9 |
| Secondary/High School | 55 | 38.2 |
| Diploma/Bachelor | 73 | 50.7 |
| Master’s/Doctoral | 9 | 6.3 |
| Only caregiver | ||
| Yes | 38 | 26.4 |
| No | 106 | 73.6 |
| Years of caregiving | ||
| 1–5 years | 124 | 86.1 |
| 5–10 years | 11 | 7.6 |
| >10 years | 9 | 6.3 |
| Living with patient | ||
| Yes | 86 | 59.7 |
| No | 58 | 40.3 |
SD: Standard deviation
The prevalence of stress was 77.8% (112/144). The results indicated that 112 caregivers met the clinical cut-off for symptoms of stress, with 31.3% experiencing mild stress, 36.3% moderate anxiety, 8.3% severe stress levels and 1.4% extremely severe stress levels. There was no significant difference in stress levels between males and females (z = −1.61, P = 0.107) or between caregivers who were the sole caregivers or not (z = −0.05, P = 0.960). However, caregivers who lived with the patient experienced significantly higher stress levels than those who did not (z = −2.45, P = 0.014) [Table 2].
| Stress | Anxiety | Depression | |
|---|---|---|---|
| DASS | |||
| Psychological distress scoring. Mean (SD) | 17.0 (8.6) | 12.9 (8.9) | 13.8 (8.8) |
| Severity of psychological distress |
n(%), 95% CI |
n(%), 95% CI |
n(%), 95% CI |
| Normal | 32 (22.2), 15.7–29.9 |
46 (31.9), 24.4–40.2 |
41 (28.4), 21.6–36.6 |
| Mild | 45 (31.3), 23.8–39.5 |
12 (8.33), 4.4–14.1 |
27 (18.8), 12.7–26.1 |
| Moderate | 53 (36.8), 28.9–45.2 |
15 (10.4), 5.9–16.6 |
47 (32.6), 25.1–40.9 |
| Severe | 12 (8.3), 7.6–8.9 |
30 (20.8), 14.5–28.4 |
18 (12.5), 7.6–19.0 |
| Extremely severe | 2 (1.4), 0.9–2.1 |
41 (28.5), 21.3–36.6 |
11 (7.6), 3.9–13.3 |
SD: Standard deviation, CI: Confidence interval, DASS: Depression anxiety stress scales
The prevalence of anxiety was 68.1% (98/144). Results showed that 98 caregivers met the clinical cut-off for symptoms of anxiety, with 8.3% experiencing mild anxiety, 10.4% moderate anxiety, 20.8% severe anxiety and 28.5% extremely severe anxiety. Anxiety was significantly more common in females than males (z = −2.27, P = 0.024). Anxiety levels did not differ whether caregivers were the sole caregivers or had support (z = −0.81, P = 0.420) or whether they lived with the patient or not (z = −1.59, P = 0.113) [Table 2].
The prevalence of depression was 71.5% (103/144). Results showed that 103 caregivers met the clinical cut-off for symptoms of depression, with 18.8% experiencing mild depression, 32.6% moderate depression, 12.5% severe depression and 7.6% extremely severe depression. There were no statistically significant differences in depression levels based on caregiver gender (z = −1.11, P = 0.266), sole caregiving status (z = −0.04, P = 0.971) or cohabitation with the patient (z = −0.65, P = 0.517) [Table 2].
The prevalence of poor QoL was 25.7%, followed by 70.14% reporting fair QoL and 4.16% for poor QoL. The mean score for the overall CQOLC was 78.99 ± 20.22. The mean scores for the subscales were as follows: burden 21.76 ± 10.67 (range: 0–44), disruptive 14.43 ± 5.11 (range: 0–24), positive adaptation 15.88 ± 4.82 (range: 0–24) and financial concern 7.67 ± 3.32 (range: 0–12) [Table 3].
| Caregiver (n=144) | Good | Fair | Poor |
|---|---|---|---|
| Score range | (0–45) | (46–90) | (90–140) |
| QoL scoring. Mean (SD) | 31.33 (7.82) | 72.62 (12.21) | 104.08 (7.43) |
| Prevalence of QoL. n(%), 95% CI |
6 (4.16), 30.05–32.61 |
101 (70.14), 70.63–74.61 |
37 (25.7), 102.87–105.29 |
QoL: Quality of life, SD: Standard deviation, CI: Confidence interval
The current study revealed that participants reported a total mean score of 26 for unmet supportive care needs, ranging from 0 to 45. Among the 144 caregivers surveyed, 86.8% reported having 5 or more unmet care needs, while 1.4% reported 4 unmet care needs, 3.5% reported 3 unmet care needs, 1.4% reported 2 unmet care needs, and another 1.4% reported 1 unmet supportive care need. The majority of the unmet needs were concentrated in the psychological/emotional and healthcare domains. Specifically, over 50% of participants reported at least 10 unmet psychological/emotional needs and 12 unmet healthcare needs [Table 4]. From the psychological distress subdomains, anxiety was the most frequently reported as severe and extremely severe (49.3%). A hierarchical multivariable linear regression was conducted to predict the factors explaining the variance in anxiety scores. After adjusting for confounding factors, anxiety showed strong associations with stress (odds ratio [OR]: 0.34, 95% confidence interval [CI]: 0.16–0.52, P: 0.000), depression (OR: 0.41, 95% CI: 0.24–0.58, P: 0.000) and income (OR: 1.42, 95% CI: 0.37–2.46, P: 0.008). In addition, caregiver gender and patient age were found to lower anxiety scores, indicating that male caregivers and older cancer patients were associated with a reduced risk of high anxiety scores among cancer caregivers, although the evidence for this association was weak [Tables 5-7].
| Item | Domain | n(%) |
|---|---|---|
| Accessing information relevant to your needs as a carer/partner | 1 Information |
64 (44.4) |
| Accessing information about the person with cancer’s prognosis or likely outcome | 2 Information |
82 (56.9) |
| Accessing information about support services for carers/partners of people with cancer | 3 Information |
83 (57.6) |
| Accessing information about alternative therapies | 4 Information |
87 (60.4) |
| Accessing information on what the person with cancer’s physical needs are likely to be | 5 Information |
91 (63.2) |
| Accessing information about the benefits and side-effects of treatments | 6 Information |
95 (66) |
| Obtaining the best medical care for the person with cancer | 7 Health care service |
95 (66) |
| Accessing local health care services when needed | 8 Health care service |
88 (61.1) |
| Being involved in the person with cancer’s care, together with the medical team | 9 Health care service |
81 (56.3) |
| Having opportunities to discuss your concerns with the doctors | 10 Health care service |
80 (55.6) |
| Feeling confident that all the doctors are talking to each other to coordinate the person with cancer’s care | 11 Health care service |
84 (58.3) |
| Ensuring there is an ongoing case manager to coordinate services for the person with cancer | 12 Health care service |
90 (62.5) |
| Making sure complaints regarding the person with cancer’s care are properly addressed | 13 Health care service |
81 (56.3) |
| Reducing stress in the person with cancer’s life | 14 Health care service |
91 (63.2) |
| Looking after your own health, including eating and sleeping properly | 15 Daily living |
83 (57.6) |
| Obtaining adequate pain control for the person with cancer | 16 Health care service |
94 (65.7) |
| Addressing fears about the person with cancer’s physical or mental deterioration | 17 Health care service |
101 (70.1) |
| Accessing information about the potential fertility problems in the person with cancer | 18 Information |
74 (51.4) |
| Caring for the person with cancer on a practical level, such as with bathing, changing dressings or giving medications | 19 Daily living |
81 (56.3) |
| Finding more accessible hospital parking | 20 Health care service |
100 (69.4) |
| Adapting to changes to the person with cancer’s working life or usual activities | 21 Daily living |
91 (63.2) |
| The impact that caring for the person with cancer has had on your working life or usual activities | 22 Daily living |
83 (57.6) |
| Finding out about financial support and government benefits for you and/or the person with cancer | 23 Legal/Financial |
83 (57.6) |
| Obtaining life and/or travel insurance for the person with cancer | 24 Legal/Financial |
82 (56.9) |
| Accessing legal services | 25 Legal/Financial |
77 (53.5) |
| Communicating with the person you are caring for | 26 Communication and Interpersonal |
71 (49.3) |
| Communicating with the family | 27 Communication and Interpersonal |
64 (44.4) |
| Getting more support from your family | 28 Communication and Interpersonal |
71 (49.3) |
| Talking to other people who have cared for someone with cancer | 29 Psychological/Emotional |
83 (57.6) |
| Handling the topic of cancer in social situations or at work | 30 Communication and Interpersonal |
86 (59.7) |
| Managing concerns about the cancer coming back | 31 Psychological/Emotional |
94 (65.3) |
| The impact that cancer has had on your relationship with the person with cancer | 32 Psychological/Emotional |
65 (45.1) |
| Understanding the experience of the person with cancer | 33 Psychological/Emotional |
80 (55.6) |
| Balancing the needs of the person with cancer and your own needs | 34 Psychological/Emotional |
87 (60.4) |
| Adjusting to changes in the person with cancer’s body | 35 Psychological/Emotional |
92 (63.9) |
| Addressing problems with your sex life | 36 Psychological/Emotional |
43 (29.9) |
| Getting emotional support for yourself | 37 Psychological/Emotional |
76 (52.8) |
| Getting emotional support for your loved ones | 38 Psychological/Emotional |
96 (66.7) |
| Working through your feelings about death and dying | 39 Psychological/Emotional |
94 (65.3) |
| Dealing with others not acknowledging the impact on your life of caring for a person with cancer | 40 Psychological/Emotional |
87 (60.4) |
| Coping with the person with cancer’s recovery not turning out the way you expected | 41 Psychological/Emotional |
80 (55.6) |
| Making decisions about your life in the context of uncertainty | 42 Psychological/Emotional |
70 (48.6) |
| Exploring your spiritual beliefs | 43 Psychological/Emotional |
69 (47.9) |
| Finding meaning in the person with cancer’s illness | 44 Psychological/Emotional |
72 (50) |
| Having opportunities to participate in decision making about the person with cancer’s treatment | 45 Health care service |
78 (54.2) |
| Source | SS | df | MS | n=144 |
|---|---|---|---|---|
| F(10, 133)=17.96 | ||||
| Model | 6535.1 | 10 | 653.51 | Prob > F=0.000 |
| Residual | 4839.54 | 133 | 36.39 | R-squared=0.575 |
| Adj R-squared=0.543 | ||||
| Total | 11374.64 | 143 | 79.54 | Root MSE=6.03 |
| DASS anxiety score | Coefficient | Standard error | t(P>|t|) | 95% confidence interval |
| DASS stress score | 0.375 | 0.085 | 4.41 (0.000) | 0.207–0.543 |
| DASS depression score | 0.42 | 0.081 | 5.17 (0.000) | 0.259–0.580 |
| Age | 0.071 | 0.06 | −1.18 (0.240) | 0.048–0.189 |
| Relationship | −0.03 | 0.158 | −0.19 (0.851) | −0.342–0.283 |
| Gender | −1.492 | 1.081 | −1.38 (0.170) | −3.629–0.646 |
| Marital status | 0.27 | 1.061 | 0.25 (0.799) | −1.828–2.369 |
| Education | −0.004 | 0.446 | −0.01 (0.992) | −0.886–0.877 |
| Income level | 1.473 | 0.522 | 2.82 (0.005) | 0.441–2.505 |
| Sole caregiver | 1.689 | 1.165 | 1.45 (0.150) | −0.616–3.994 |
DASS: Depression anxiety stress scales, MSE: Mean Square Error, SS: Sum of squares, df: Degrees of freedom, MS: Mean square
| Source | SS | df | MS | n=144 |
|---|---|---|---|---|
| F(10, 133)=17.96 | ||||
| Model | 6699.87 | 13 | 515.37 | Prob > F=0.000 |
| Residual | 4674.77 | 130 | 36.96 | R-squared=0.589 |
| Adj R-squared=0.548 | ||||
| Total | 11374.64 | 143 | 79.54 | Root MSE=5.997 |
| DASS anxiety score | Coefficient | Standard error | t(P>|t|) | 95% confidence interval |
| DASS stress score | 0.375 | 0.085 | 4.41 (0.000) | 0.207–0.543 |
| DASS depression score | 0.42 | 0.081 | 5.17 (0.000) | 0.259–0.580 |
| Age | 0.071 | 0.06 | −1.18 (0.240) | 0.048–0.189 |
| Relationship | −0.03 | 0.158 | −0.19 (0.851) | −0.342–0.283 |
| Gender | −1.492 | 1.081 | −1.38 (0.170) | −3.629–0.646 |
| Marital status | 0.27 | 1.061 | 0.25 (0.799) | −1.828–2.369 |
| Education | −0.004 | 0.446 | −0.01 (0.992) | −0.886–0.877 |
| Income level | 1.473 | 0.522 | 2.82 (0.005) | 0.441–2.505 |
| Sole caregiver | 1.689 | 1.165 | 1.45 (0.150) | −0.616–3.994 |
| Years of caregiving | 0.435 | 0.97 | 0.45 (0.654) | −1.483–2.353 |
| Patient age | −0.33 | 0.479 | −0.69 (0.492) | −1.277–0.617 |
| Cancer type | −1.024 | 0.531 | −1.93 (0.056) | −2.074–0.025 |
| Live with patient | 0.848 | 1.162 | 0.73 (0.467) | 1.452–3.148 |
| Cons | −2.197 | 4.093 | −0.54 (0.592) | −10.296–5.901 |
DASS: Depression anxiety stress scales, MSE: Mean Square Error, SS: Sum of squares, df: Degrees of freedom, MS: Mean square
| Source | SS | df | MS | n=144 |
|---|---|---|---|---|
| F(10, 133)=17.96 | ||||
| Model | 6712.12 | 14 | 479.44 | Prob > F=0.000 |
| Residual | 4662.52 | 129 | 36.14 | R-squared=0.589 |
| Adj R-squared=0.548 | ||||
| Total | 11374.64 | 143 | 79.54 | Root MSE=6.012 |
| DASS anxiety score | Coefficient | Standard error | t(P>|t|) | 95% confidence interval |
| DASS stress score | 0.339 | 0.091 | 3.71 (0.000) | 0.158–0.520 |
| DASS depression score | 0.411 | 0.086 | 4.79 (0.000) | 0.241–0.581 |
| Age | 0.07 | 0.061 | 1.15 (0.252) | −0.050–0.190 |
| Relationship | 0.028 | 0.161 | 0.17 (0.863) | −0.291–0.347 |
| Gender | −1.522 | 1.098 | −1.39 (0.168) | −3.694–0.650 |
| Marital status | 0.597 | 1.082 | 0.55 (0.582) | −1.543–2.738 |
| Education | 0.213 | 0.457 | 0.47 (0.642) | −0.691–1.117 |
| Income level | 1.418 | 0.529 | 2.68 (0.008) | 0.372–2.464 |
| Sole caregiver | 1.353 | 1.233 | 1.10 (0.275) | −1.086–3.791 |
| Years of caregiving | 0.373 | 0.978 | 0.38 (0.704) | −1.562–2.308 |
| Patient age | −0.34 | 0.48 | −0.71 (0.480) | −1.290–0.610 |
| Cancer type | −1 | 0.534 | −1.87 (0.063) | −2.056–0.055 |
| Live with patient | 0.816 | 1.167 | 0.70 (0.486) | 1.493–3.124 |
| Cons | −3.175 | 4.434 | −0.72 (0.475) | −11.948–5.600 |
DASS: Depression anxiety stress scales, MSE: Mean Square Error, SS: Sum of squares, df: Degrees of freedom, MS: Mean square
DISCUSSION
Between 2020 and 2040, global cancer incidence is projected to increase by 49%, while cancer mortality is expected to rise by 62%, impacting all regions worldwide.[28] Consequently, we anticipate a rise in the number of individuals living with the disease and a corresponding increase in the number of caregivers providing care for cancer patients. This study focused on the complex factors influencing the outcomes of caregiving. The concept of caregiver burden has been a central focus of numerous studies due to its profound influence on the psychological, emotional and physical well-being of the caregivers.
The results of the present study revealed a high prevalence of psychological distress among caregivers, with the majority reporting symptoms of depression, stress and anxiety. Notably, female caregivers exhibited higher levels of anxiety than male caregivers. These findings are in line with recent systematic reviews and meta-analyses that suggest being a female is a risk for psychological distress.[7,29-32] This could be attributed to the extensive and challenging responsibilities and roles that women typically face on a global scale. Moreover, caregiving behaviours seem to differ by gender, with men showing a preference for organisational aspects of care rather than hands-on tasks.
However, contrary to previous literature, our findings revealed no significant correlation between psychological distress and being the sole caregiver or residing with the patient. In addition, caregiver age was not identified as a risk factor for psychological distress, in contrast to findings from a recent systematic review indicating that younger caregivers are more susceptible to caregiver burden.[33] Moreover, in the current study, variables such as the type of cancer, level of education and caregiver’s relationship to the cancer patient did not significantly affect caregiving burden. This contradicts findings from international studies in countries such as Malaysia, Germany and the Netherlands, where these factors were reported to influence caregiving burden.[34-36]
Recent longitudinal studies have indicated that while caregiver burden and unmet needs may fluctuate over time, they can persist over the entire period of caregiving in cancer scenarios.[37,38] Contrary to what might be expected, this study found that the duration of caregiving did not significantly increase psychological distress, which could imply that caregivers develop more effective caregiving skills and knowledge over time, addressing some of their information needs.
The findings on the QoL among caregivers in this study align with prior research.[14,16] Psychological distress marked by anxiety, depression and general distress is likely a contributing factor to a decreased QoL for caregivers.[29,39] Responsibilities associated with caregiving may also reduce social engagement and negatively affect social relationships, further impacting QoL.[39] The interdependence of QoL between caregivers and cancer patients is notable, with each influencing the other. This interconnection highlights the need for supportive interventions targeting caregivers’ QoL as a means to improve the well-being of both parties involved in the caregiving journey.[40]
In the initial assessment, a substantial majority of caregivers reported 5 or more unmet care needs, predominantly in psychological/emotional and healthcare areas. More than half reported at least ten psychological/emotional unmet needs and 12 unmet healthcare needs. These needs span concerns about the patient’s mental and physical decline, emotional support needs for the patient, navigating thoughts surrounding mortality, access to optimal medical care and practical issues such as hospital parking. Notably, a minority of caregivers addressed concerns about the sexual life of cancer patients, a subject which receives less attention in literature and is heavily influenced by cultural and societal norms, particularly within Arab countries and certain ethnic groups.[41]
Clinical implications
The results of this study emphasise the significant role of both palliative care physicians and medical oncologists in recognising and addressing the psychological distress experienced by caregivers. In addition, the importance of introducing specialised services such as counselling and emotional health management, along with the need to recruit personnel with academic and clinical training in the field of mental health.
It is critical that these healthcare professionals implement screening and provide counselling to mitigate issues such as caregiver depression and stress. There is a clear demand among caregivers for enhanced support services, including access to healthcare information and emotional as well as psychological support, especially concerning fears of disease progression. Globally, many cancer centres have established caregiver support programmes that offer services ranging from peer monitoring to educational and psychological support, integrated into routine care. In the US, over 75% of accredited cancer centres offer at least one caregiver support programme. These are examples for Oman to consider in its effort to strengthen caregiver support, with the understanding that it must overcome challenges related to financial structures, workforce availability and legislative support. By addressing these issues and possibly taking cues from policies such as the CARE Act, Oman can advance its healthcare system to create a robust and inclusive framework for cancer care.[42]
Limitations
The present study has several limitations that need to be acknowledged. It was conducted at a single hospital, which constrains the extent to which the results can be applied to the broader population of caregivers in Oman. It examined the unmet needs of caregivers for patients with a variety of cancers at different progression stages. The study’s participants comprised various caregiver–patient relationships, such as spouses, siblings or adult children, which could influence the psychosocial impact of caregiving. Moreover, while the study focused on the caregivers’ current psychological health, QoL and unmet needs, it did not consider the caregivers’ psychological state before taking on their roles, a factor which remains unexplored. Future research is suggested to overcome these limitations and provide a more comprehensive understanding of the caregiver experience.
CONCLUSION
The study provides important contributions despite its limitations. It highlights the necessity of interventions that focus on stress management and the development of coping skills for cancer caregivers. Establishing a well-defined set of unmet needs is also crucial, as it lays the groundwork for crafting and deploying targeted interventions. Furthermore, the research offers insights into recognising caregivers who are most susceptible to high levels of caregiver burden, paving the way for preventative measures and support tailored to this at-risk group.
Acknowledgements:
The authors extend their sincere gratitude to all the participants who generously contributed their time and insights to this research endeavour. In addition, we would like to express our appreciation to Dr. Suad AlKharusi, Head of National Oncology Centre at the Royal Hospital, Dr. Adhari Al Zaabi and Nurse Abeer Al Hinai for their invaluable support and guidance throughout this study.
Ethical approval:
The research/study was approved by the Institutional Review Board at the Scientific Research Committee of Royal Hospital, approval number SRC#74/2022, dated 4th October 2022.
Declaration of patient consent:
The authors certify that they have obtained all appropriate patient consent.
Conflicts of interest:
There are no conflicts of interest.
Use of artificial intelligence (AI)-assisted technology for manuscript preparation:
The authors confirms that there was no use of artificial intelligence (AI)-assisted technology for assisting in the writing or editing of the manuscript and no images were manipulated using AI.
Financial support and sponsorship: Nil.
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