- Supporting the Supporters: What are the Unmet Needs and Quality of Life of Caregivers of Cancer Patients in Singapore? \
ORIGINAL ARTICLE | OPEN ACCESS DOI: 10.23937/2643-4563/1710023

Supporting the Supporters: What are the Unmet Needs and Quality of Life of Caregivers of Cancer Patients in Singapore?

Gek Phin Chua1*, Quan Sing Ng2, Hiang Khoon Tan3 and Whee Sze Ong4

1CEIS (Research & Data), National Cancer Centre Singapore, Singapore

2Division of Medical Oncology, National Cancer Centre Singapore, Singapore

3Division of Surgery and Surgical Oncology, National Cancer Centre Singapore, Singapore

4Division of Clinical Trials and Epidemiological Sciences, National Cancer Centre Singapore, Singapore

Abstract

Background

Caregivers of cancer patients may assume diverse responsibilities during the patient's cancer trajectory, providing physical assistance, emotional and financial support. These responsibilities can be highly demanding, emotionally stressful and financially draining and can impact on the caregivers' quality of life (QOL).

This study aims to determine the unmet needs of caregivers of cancer patients in Singapore and establish if the unmet needs are associated with their QOL in order to guide practice.

Methods

A cross-sectional survey was conducted with 986 caregivers of cancer patients. Determinants of caregivers' unmet needs and QOL were assessed by the Support Person Unmet Needs Survey (SPUNS-SF) and the Singapore version of the Caregiver Quality of Life Index-Cancer (CQOLC-S25).

Results

The mean overall score of unmet needs was 20.98 ± 20.1. The top 3 items with the highest mean score of unmet needs were all from the "Future" domain viz. "dealing with worry about cancer getting worse" (1.50 ± 1.4), "dealing with not knowing what lies in the future" (1.43 ± 1.3) and "dealing with worry about cancer coming back" (1.20 ± 1.3). Caregivers who were younger, the primary caregivers, caregivers who provided financial assistance to the patients they cared for, caregivers whose health status were made worse by caregiving activities, caregivers who were taking care of female patients, lung cancer patients and patients on palliative care had significantly higher mean overall score of unmet needs. The mean overall QOL score was 71.34 ± 17.5. The overall QOL scores were negatively correlated with the overall scores of unmet needs. There were significant negative correlation between QOL and all domains of unmet needs.

Conclusion

Our results demonstrate that caregivers of cancer have many unmet needs and these unmet needs have a significant negative effect on their QOL. Thus, addressing their unmet needs is critical to enhance their coping skills and ultimately their QOL.

Keywords

Caregivers, Cancer, Oncology, Quality of life, Unmet needs

Abbreviations

QOL: Quality of Life; NCCS: National Cancer Centre Singapore; CIRB: Centralised Institutional Review Board; SPUNS-SF: Support Person's Unmet Needs Survey - Short Form; CQOLC-S25: Caregiver Quality of Life Index - Cancer - Singapore version; ANOVA: Analysis of Variance; FOR: Fear of Recurrence

Introduction

Cancer is a major cause of mobility and mortality worldwide and in the year 2018, cancer claimed 9.6 million lives worldwide, accounting for 1 in 6 deaths globally [1]. Similarly, in Singapore, an young island nation situated at the southern tip of the Malayan Peninsula, cancer is the leading cause of death accounting for 29.7% of deaths in 2015 [2]. The three most common types of cancers in men are colorectal, lung and prostate cancers, while the three most common types of cancers in women are breast, colorectal and lung cancers [2]. Singapore is a multi-racial and multi-cultural country, consisting of Chinese (76.2%), Malays (15%) and Indians (7.4%) [3].

Unlike many other diseases, cancer is a complex disease and demands intense treatment and its resultant side-effects can be life-long. Cancer not only represents a crisis for the patient but also affects those close to them, encompassing partners, family members and close friends [4,5]. They may assume diverse responsibilities throughout the cancer patient's trajectory and are thus, an invaluable source of support to individual with cancer in their adaptation and coping process [6,7]. Caregiving for cancer patients constitutes both tangible assistance such as personal care activities, changing dressings, medication administration and monitoring side effects, symptom management, feeding, meal preparation; and intangible assistance, such as providing emotional, social, financial and spiritual support, decision making and communication with healthcare professionals and family members [7-9]. These responsibilities which can be highly demanding, physically and emotionally stressful and financially draining can impact the caregivers' quality of life (QOL). Studies have shown that family caregivers actually experience as much distress as the patients, if not more [9-11]. Evidence in literature also attests to the heightened burden placed not only on primary caregivers but also on informal caregivers and its impact on both mental and physical health outcomes [9,11-13].

The distress and burden for caring for a person with cancer may be higher in the Asian society than the Western society. Asian society has expectations that differ from Western society. Whereas, Western society emphasizes independence as a means of maintaining self-esteem, in the Asian context, families are more involved in caring for one another. Asian society promotes filial piety, social cohesion, family harmony and interdependence where the family members assume a greater role in caring for its members, especially the elderly, sick or disabled. Hence, the family is expected to take on the role of informal caregiving including but not limited to providing physical care, emotional, social and financial support and decision making.

The four general categories of caregiver needs identified are: 1) Information; 2) Personal and emotional; 3) Work and finance; and 4) Healthcare access and continuity [7,13-18] and studies revealed that a substantial percentage of caregivers have unmet needs while providing their complex roles of caregiving [4,9,15,19-26]. A study in Germany by Sklenarova, et al. [4] on 188 primary caregivers of lung, urological and gastrointestinal cancers found only 24.4% had no unmet needs while 43.6% reported having > 10 unmet needs. Items of unmet needs identified were the need for support in: 1) Addressing fears about the patient's physical or mental deterioration (52.7%); 2) Managing concerns about cancer coming back (44.6%); and 3) Working through your feelings about death and dying (40.8%). In Korea, Kim &Yi [21] reported the prevalence of unmet needs was high and ranged from 57% to 88.9%, depending on the domain. The highest rates of unmet needs were in domains of: 1) Healthcare staff (88.9%) e.g seeing a doctor quickly and easily when in need; 2) Information (84%) e.g. information about the current status of patient's illness and its future course (84%); and 3) Hospital facilities/services (78.8%). Heckel, et al. [23] study in 4 Australian Hospitals established that caregivers experienced significant levels of moderate/ high unmet needs with more than half of caregivers (57%) reporting at least one unmet need and with 15% having at least 10 unmet needs. The majority of unmet needs were in the domains of information and health care service needs. In a recent study in Iran on 200 family caregivers, Ashrafian, et al. [15] found that the 3 most important needs of the family caregivers were in the domain of: 1) Information, 2) Healthcare staff (physicians and nurses), and 3) Health and psychological problems. Although studies have established the unmet needs of caregivers of cancer patients; however, there were conflicting findings [15,20,21,27] which may be due to the setting, the sample, sampling method and sample size. Besides, family caregiving in Singapore may differ from other countries because of the different attitudes, norms, practices and expectations including the healthcare financing system. There is also no reported study on the unmet needs and QOL of caregivers of cancer patients in the local setting. Besides, without assessing caregivers' unmet needs, their personal well-being and own health may be at risk, which may, in turn, jeopardize their ability to continue providing care and support for the cancer patient. In view of the unique role they play in supporting the cancer patients and the adverse consequences to their personal health due to their unmet needs, the identification of caregivers' unmet needs and QOL would be helpful in directing and developing strategies and programmes to help and support caregivers in carrying out their important and often vital role.

The purpose of the current study was to determine the unmet needs and QOL of caregivers of cancer patients in Singapore. The specific aims were:

• To determine the unmet needs and QOL of caregivers of cancer patients.

• To assess if the unmet needs of caregivers were associated with their QOL.

• To identify those caregivers whose needs were less likely to be met based on demographic characteristics.

Methods

Design, Sample and Setting

This was a cross-sectional survey study conducted at the National Cancer Centre Singapore (NCCS) between 10 September and 7 December 2018. The targeted sample size of the survey was 400 respondents, and this was determined such that the margin of errors of a 95% confidence interval for a population proportion would be kept at a maximum of 5%.

Eligible caregivers to participate in this survey were identified based on the National Cancer Institute's definition of "family caregiver" [28]. These were unpaid individuals who might be the parents, children, spouses, relatives, or friends who were helping cancer patients with their activities of daily living and healthcare needs (including coping with the disease process at home). Caregivers must be able to read and/or write English or Mandarin, and the cancer patients they were providing care to have attended the National Cancer Centre Singapore (NCCS) for at least one month. Domestic maids or helpers who were paid to take care of the patients and caregivers of walk-in patients were excluded from the study.

The research assistants confirmed the eligibility criteria of each potential eligible caregiver with the patients during their clinic visit. Eligible caregivers who accompanied the patients during their clinic visit were invited to participate in the survey and given the questionnaire to complete. Explanation was given about the purpose of the study, the voluntary nature and procedures including how to fill up the questionnaire. For those patients whose caregivers met the eligibility criteria but did not accompany the patients during their clinic visit, the questionnaire with its explanatory note was given to the patients in a pre-paid envelope to bring home for the caregivers to complete.

Ethics and consent to participate: Ethical consent was obtained from the SingHealth Centralised Institutional Review Board (CIRB) prior to the study. Waiver of written informed consent was obtained as no personal identifiers of respondents were obtained.

Instruments

Demographic and patient-related characteristics: These caregiver-related characteristics were collected: Age, sex, race, marital status, highest education level attained, economic status, monthly household income, housing type, relationship to cancer patient, whether living with cancer patient, type of caregiver, duration of care provision, type of care provided, time spent per week providing care, health status and impact of care provision on health status of caregiver.

These patient-related characteristics were collected: Age, sex, marital status, type of cancer, time since cancer diagnosis, disease stage, current cancer trajectory stage and treatment received in the last month prior to survey.

Unmet needs: The SPUNS-SF developed and validated by Campbell and colleagues [29] contained 26 items which assessed a caregiver's unmet needs in 6 domains viz. (i) Information (6 items); (ii) Personal (4 items); (iii) Emotional (3 items); (iv) Work and finance (5 items); (v) Healthcare access and continuity (5 items); and (vi) Concerns about the future (3 items). An unmet need was a need that the caregiver has not been able to satisfy on his or her own, and required professional support. A 5-point Likert response scale was used to measure the extent of unmet needs (0 = no unmet needs, 1 = low unmet needs, 2 = moderate unmet needs, 3 = high unmet needs, and 4 = very high unmet needs) of a caregiver on each item in the past month prior to the survey. Cronbach's alphas co-efficient for all subscales were ≥ 0.87 [29].

Quality of life: The CQOLC-S25 is developed and validated by Mahendran and colleagues [30] contained 25 items which assessed a caregiver's QOL in 5 domains: (i) Burden (8 items); (ii) Physical and practical concerns (5 items); (iii) Emotional reactivity (4 items); (iv) Self-needs (4 items); and (v) Social support (4 items). A 5-point Likert response scale was used to measure how true was each item (0 = not at all, 1 = somewhat, 2 = a little bit, 3 = quite a bit, and 4 = very much) to a caregiver in the past week prior to the survey. The Cronbach alpha coefficient has been found to be 0.89 [30].

Statistical analysis

Scoring of SPUNS-SF and CQOLC-S25 were performed according to the guidelines of each survey instrument. The overall score of unmet needs was the sum of all the responses to the 26 SPUNS-SF items, and ranged from 0 to 104. The higher the overall score of unmet needs, the higher the level of unmet needs. The overall QOL score was the sum of all the responses to the 25 CQOLC-S25 items, and ranged from 0 to 100. The items in the burden, physical and practical concerns, emotional reactivity and self-needs domain were reverse-coded and scored accordingly (i.e. a "0 = not at all" response was allocated 4 points, "1 = somewhat" response was allocated 3 points, "2 = a little bit" response was allocated 2 points, "3 = quite a bit" response was allocated 1 point, and "4 = very much" response was allocated 0 point) so that a higher overall QOL score would reflect a better QOL. Descriptive statistics were used to summarise the data. Differences in mean overall score of unmet needs by caregiver and patient characteristics were assessed based on one-way Analysis of Variance (ANOVA), and independent predictors of overall score of unmet needs were identified based on multiple linear regression analyses. Corresponding analyses were performed for overall QOL score. Pearson's correlation coefficient (r) was used to assess the extent of linear correlation between the overall score of unmet needs and the overall QOL score. All analyses were performed using SAS version 9.4 [31].

Results

Response rate and caregiver and patient characteristics

A total of 2498 caregivers were eligible to participate in the survey, of which 1250 (50%) filled up and returned their survey forms to the study team. Only 986 responded caregivers completed all the questions in the 2 sections and were included in the analysis population.

Of the 986 analysed caregivers, median age was 41 years (range, 14-84 years) and 55% were female (Table 1). Majority of the caregivers had at least a post-secondary education (79%) and were working (70%). Half of the caregivers were providing care to their parents, and another 22% were taking care of their spouses or partners. Most of the caregivers were the non-primary caregiver of the patients they cared for (68%), and had been taking care of their patients for > 1 year (59%). The most common type of care provided was companionship (91%), followed by transportation (77%) and financial assistance (48%). The health status of majority of the caregivers (83%) was not affected by their caregiving activities.

Table 1: Characteristics of caregivers. View Table 1

The median age of patients was 63 years (range, 13-95 years) and 65% were female (Table 2). Slightly more than a quarter (27%) of the patients was diagnosed with breast cancer, 12% with lung cancer and 11% with colorectal cancer. About half of the patients' disease were in advanced stage - 22% were in stage 3 and 30% were in stage 4. In terms of cancer trajectory, 53% were on active treatment, 31% had completed treatment and were cancer-free, and 8% were dealing with recurrence or second cancers.

Table 2: Characteristics of cancer patients. View Table 2

Unmet needs of caregivers

The mean overall score of unmet needs was 20.98 ± 20.1 (Table 3). The top 3 items with the highest mean score of unmet needs were all from the "Future" domain. The top item was "dealing with worry about cancer getting worse" (1.50 ± 1.4), followed by "dealing with not knowing what lies in the future" (1.43 ± 1.3) and "dealing with worry about cancer coming back" (1.20 ± 1.3). On the other hand, the 3 items with the lowest mean score of unmet needs were mostly from the "Information" domain: "finding information about cancer and its impact on sexual relationship" (0.44 ± 0.8), "dealing with the way co-workers feel about my situation" (0.50 ± 0.9) and "being about to talk openly on feelings/worries with healthcare professional" (0.65 ± 0.9).

Table 3: Unmet needs of caregivers. View Table 3

One-way ANOVA revealed that there were significant differences in the mean overall score of unmet needs by several characteristics of caregivers and patients (Table 4). On multiple linear regression analysis, caregivers who were younger (P = 0.001), the primary caregivers (P < 0.001), caregivers who provided financial assistance to the patients they cared for (P = 0.007), caregivers whose health status were made worse by caregiving activities (P < 0.001), caregivers who were taking care of female patients (P = 0.004), lung cancer patients (P = 0.013) and patients on palliative care (P < 0.001) had significantly higher mean overall score of unmet needs. This multivariable model, though statistically significant (P < 0.001), was only able to explain 22.6% of the variance in the overall scores of unmet needs.

Table 4: Mean overall score of unmet needs of caregivers. View Table 4

Quality of life of caregivers

The mean overall QOL score was 71.34 ± 17.5 (Table 5). The 3 items with the lowest mean QOL score were mostly from the "Social support" domain: "family communication has increased" (1.68 ± 1.4), "I have developed a closer relationship with my loved one" (1.86 ± 1.5), and "I fear my loved one will die" (2.07 ± 1.6). The 3 items with the highest mean QOL score was "I feel guilty" (3.40 ± 1.1), "the need to protect my loved one bothers me" (3.35 ± 1.1) and "it bothers me that I need to be available to chauffeur my loved one to appointments" (3.33 ± 1.1).

Table 5: Quality of life of caregivers. View Table 5

The overall QOL scores were negatively correlated with the overall scores of unmet needs (r = -0.76; P < 0.001) (Figure 1). There were significant negative correlation between QOL and all the domains of unmet needs. The unmet needs domain with the highest correlation with QOL was "Personal" (r = -0.71; P < 0.001), followed by "Future" and "Emotional" (both domain's r = -0.66; P < 0.001), "Information" (r = -0.63; P < 0.001), "Work and finance" (r = -0.61; P < 0.001) and "Access and continuity of healthcare" (r = -0.60; P < 0.001).

Figure 1: Scatterplot of overall scores of quality of life and unmet needs. View Figure 1

The mean overall QOL score was reduced by 0.7 points (95% CI, -0.7, -0.6) for every additional point increase in the overall score of unmet needs (Table 6). Overall score of unmet needs remained significantly associated with the mean overall QOL score on multiple linear regression analysis. The other independent variables associated with the mean overall QOL scores were the impact of caregiving on health status of caregivers and whether caregivers were taking care of breast cancer patients. The multivariable model explained 59% of the variability in the overall QOL scores.

Table 6: Mean overall quality of life scores of caregivers. View Table 6

Discussion

This is the first study to assess the unmet needs and QOL of caregivers of cancer patients in Singapore and findings from this survey contribute to the body of knowledge that is currently lacking in this field. These findings also provide an evidence-based approach in developing a comprehensive support system for caregivers of cancer patients in Singapore.

Discussion

Our findings indicate that caregivers of cancer patients have many unmet needs as suggested by previous studies [19-21,23-26] and that these unmet needs have a negative impact on their QOL. The highest scores of unmet needs were all found in the domain of "future" which contrasts with existing literature [15,21,23] but corresponds with the results by Han, et al. [32] and Doubova, et al. [20]. In a large study in Mexico of 826 primary caregivers of cancer patients, Doubova, et al. [20] found that the most frequent unmet needs were related to uncertainty about the future: dealing with worry about cancer coming back (42.9%), dealing with future uncertainty (39.7%), and "dealing with worry about cancer getting worse" (38.7%). Our findings strongly indicate the psychological impact experienced by these caregivers. The fear of recurrence (FOR) is defined as the worry or fear that the cancer will return, progress or spread [33] has well been reported in the studies [34-39]. Evidence in literature reveals the negative impacts associated with FOR, including emotional distress [40]; functional status [41]; and QOL [41-44]. This may imply the fear and possible threat of losing a loved one which is confirmed by the lower score on QOL under the "Emotional" domain: "I fear my loved one will die". Based on current evidence, the FOR is the top unmet needs in caregivers of cancer patients and the fear and possible threat of losing a loved one has a negative effect on their QOL, may indicate a need for psychological screening and the importance of enhancing the information delivery and supportive care services to meet the emotional and psychological needs of caregivers.

Findings also revealed that the lowest scores rate of unmet needs were mostly from the "Information" domain and "finding information about cancer and its impact on sexual relationship" obtained the lowest score 0. This finding is similar to another study [45] where the researchers found that patients receiving active cancer treatment rated information on sexuality as the least important. Although cultural values and beliefs may have influenced the caregivers' behaviours, another possible explanation is that only 22% of caregivers were spouses and the majority (51%) of caregivers was children caring for their parents with cancer. In addition, half of the patients were in advanced stage and concerns relating to patients' life expectancy may be of more immediate concern.

Can we predict whose needs are less likely to be met based on demographic characteristics?: Several caregivers' and patients' characteristics were independently associated with cancer caregivers' unmet needs. Firstly, a primary caregiver had higher mean score of unmet needs than a non-primary caregiver (difference = 6.4, 95% CI, 3.1-9.8). As primary caregiver by definition is the caregiver most involved with the provision of care to the patient, the finding that primary caregivers had higher score of unmet needs may be attributable to the higher burden of caregiving. A study by Lund and colleagues [46] established that primary caregivers experienced the highest caregiving workload. Secondly, younger caregivers had higher mean scores of unmet needs than older caregivers aged > 60 years. This was not unexpected considering that younger caregivers may have competing demands from their careers and young families while taking care of the cancer patients [7,26,47]. Thirdly, caregivers who provided financial assistance to the patients they cared for also have significantly higher unmet needs than those who did not. Healthcare in Singapore is financed by a combination of employee medical benefits, insurance, compulsory savings in the form of Medisave and out-of-pocket payment (families polling resources for medical expenses) and government subsidies in the public healthcare systems [48]. The financial concerns caused by cancer are well reported in the literature [14,16,19,27,38-40,47]. In a study in Korea, it was found that 61.9% of families used up their family savings, 17.1% had to move to a less expensive home, 13.2% had to delay care for another family member and 26.5% had to change educational plans for another family member [13]. A recent study in India on the impact of breast cancer on the patient and the family found that 43% (144) had financial difficulty with cost of treatment and had to resort to desperate measures such as selling their property or taking on high-interest personal loans [49]. As 48% of caregivers are providing financial assistance to the cancer patients, and although 70% of the caregivers in this study are working, the finding may indicate that caregivers may have financial concerns in spite of the Government's implementation of MediShield Life and MediFund schemes which are designed to address catastrophic medical conditions including cancer. Based on the finding, more financial support for cancer patients through government subsidies and other supporting mechanisms may significantly lighten the financial burden imposed on their caregivers. In addition, further studies are needed to assess cancer caregivers' unmet financial needs/burden are warranted.

Our findings also established that caregivers of patients on palliative care, lung cancer patients, and caregivers whose health were made worse by caregiving activities, were the predictors of unmet needs. These findings are in concordance with previous studies [22,50,51]. Although our finding also revealed a significant association of caregiver unmet needs with caring for female patients, however, this finding contradicted the finding by Heckel, et al. [23]. In view of the contradictions and that to date, few studies have investigated such a relationship; therefore, more research is needed to draw a reliable conclusion.

Our findings underscore the importance of understanding socio-demographic characteristics of caregivers who are more vulnerable so that efforts could be channeled to those caregivers whose needs are less likely to be met.

Caregivers' quality of life

In our study, the mean overall QOL score was 71.34 ± 17.5. This is a relative low score as compared with the 74.62 ± 20.54 obtained in a Korean study [21]. The items that received relatively low QOL scores were under the "Emotional" domain: "I fear my loved one will die", "It upsets me to see my loved one deteriorate" and "I fear the adverse effects of treatment on my loved ones" however were similar to Kim and Yee's study. This may suggests the psychological pressure exerted on the caregivers in relation to the deterioration of patient's functional status.

The study also established that the impact of caregiving on the health status of caregivers is associated with the mean overall QOL scores. This may suggest the burden of caregiving in relation to caregivers' health status. The burden of caregiving is well reported in the literature. In a large study involving 590 cancer caregivers, Lund, et al. [46] established that cancer caregiving is burdensome and demanding and it may jeopardize the caregivers' own well-being. A large proportion of caregivers experienced substantial caregiving workload related to practical help, provision of psychological support, and transport. Caregivers reported a range of negative consequences, most commonly stress (59%) and 16% reported some or a lot of negative effect on their own physical health. Burdened caregivers are 6 times more at risk of depression [13]. The impact on health was found to have a negative influence on the health-related QOL and mental health [52]. As supporting their loved ones to the best of their ability without complaint is expected in the Asian society, this finding indicates the need for caregivers assessment to identify those at risk of negative outcomes. In addition, resources to assist caregivers to provide needed care and early identification and referral to respite care or support services, including the promotion of active coping are also needed [7,53].

Additionally, the mean overall QOL scores were associated with caregivers who were taking care of breast cancer patients. The challenges confronting breast cancer patients are well reported in the literature [44,54,55]. Even 2 to 10 years post cancer treatment; high rates of anxiety are reported by disease-free breast cancer survivors [56]. We postulate that the challenges confronting the breast cancer patients may have posed a burden on their caregiver and warrants further investigation.

Literature indicates the positive benefits that can be derived from caring for a loved one. These include personal satisfaction [7], closer relationship [7,53,57] and fulfillment from helping to relieve another's suffering [57]. Our findings that "family communication has increased" and "I have developed a closer relationship with my loved one" lowest mean scores may suggest that these are not an issue with regard to affecting their QOL but in contrast may imply that caregivers view the cancer experience has improved the communication and relationship with their loved ones.

Caregivers' unmet needs relate to QOL

Our findings indicated that that every domain of unmet needs of the cancer caregiver affects their QOL negatively. With the top three scores of unmet needs that relate most with their QOL fall in the domains of "Personal", "Future" and "Emotional", and the most commonly reported psychological effects which affect the caregivers QOL are sleep problems, stress and worries, it further confirms the psychological challenges confronting them and warrant attention. The impact on psychological health in the form of insomnia [7], distress [13], anxiety [4,58,59], worry [7], depression [13,23,58] on caregivers has been frequently identified as negative consequence of caregiving. This significant negative association between QOL and psychological and emotional unmet needs highlights the importance of addressing and helping caregivers with coping skills and emotional support as part of patient care.

The mean overall QOL score was reduced by 0.7 points for every additional point increase in the overall score of unmet needs and the overall score of unmet needs remained significantly associated with the mean overall QOL score. This further indicates that caregivers QOL would be enhanced when the caregiver's unmet needs in the context of cancer care are met. This suggests that it is critical to consider developing information and supportive care interventions to help the caregivers. Particular importance must also be paid to the support relating to their fear of recurrence and disease progression; the fear of losing their loved ones and the more vulnerable group of caregivers in order for them to support and maximize the well-being of the individual coping with cancer.

Limitations

There were several limitations in this study. The main limitation of this study is the study was performed only in a group of cancer caregivers who attended an ambulatory centre in Singapore; this may limit generalizability of the results. Another limitation is the high rejection rate; therefore, there could be a nonresponse bias and thus the results must be interpreted with caution. However, the Centre we conducted the study is the largest ambulatory cancer centre in the country where the vast majority of cancer patients receive care and the large sample size may help to mitigate these limitations. Moreover, measurement of unmet needs and QOL were via standardized, validated tools that addressed unmet needs across six domains and QOL across five domains.

Conclusion

This study contributes to the cancer caregivers' literature especially in the context in Singapore as there is no reported study to date. Based on our findings, we demonstrated that caregivers of cancer patients have many unmet needs and these unmet needs have a significant negative impact on their QOL. Cancer caregiving is demanding, burdensome and stressful and may jeopardize the well-being of the caregivers and affect their ability to render care and support to the cancer patients. Given the important role caregivers play in supporting the cancer patients, addressing their unmet needs will help enhance their coping skills and ultimately improve their QOL.

Our findings provide an evidence-based guide for the design and implementation of comprehensive supportive care services that address the diverse needs of caregivers of cancer patients. Of particular importance that warrants attention are the non-physical aspects of caregiving such as the psychological and emotional dimensions as these are the most distinctive findings of this study. The findings also highlight the importance of encouraging caregivers to voice their needs early and assessing the needs of caregivers of cancer patients paying particular attention to the more vulnerable groups as revealed in this study.

Acknowledgements

We express appreciation to participants in this study and the patients they care for.

Ethics Approval and Consent to Participate

Ethical consent was obtained from SingHealth Centralised Institutional Review Board (CIRB) prior to the study. Waiver of documentation of informed consent was approved based on ethical consideration as no personal identifiers of respondents were obtained.

Competing Interest

The authors have no conflict of interest to declare.

Source of Support

This study was supported by a grant from the National Cancer Centre Research Fund (NCCRF-YR2018-JAN-PG6).

Statement of Equal Authors' Contribution

CGP conceptualised and designed the study. Data collection was managed by CGP. OWS performed data cleaning and statistical analysis. NQS and THK supervised and provided guidance and expertise. All authors read and approved the final manuscript.

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Citation

Chua GP, Ng QS, Tan HK, Ong WS (2020) Supporting the Supporters: What are the Unmet Needs and Quality of Life of Caregivers of Cancer Patients in Singapore?. Int J Oncol Res 3:023. doi.org/10.23937/2643-4563/1710023