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Original article
Needs of family caregivers of advanced cancer patients: a survey in Shanghai of China J. CUI, PHD, School of Nursing, Second Military Medical University, Shanghai, L.J. SONG, MS, Department of Nursing, Shanghai Medical College, Shanghai, L.J. ZHOU, PHD, School of Nursing, Second Military Medical University, Shanghai, H. MENG, MD, Department of Health Statistics, Second Military Medical University, Shanghai, & J.J. ZHAO,
BSC,
Department of Nursing, Changhai Hospital, Second Military Medical University, Shanghai, China
CUI J., SONG L.J., ZHOU L.J., MENG H. & ZHAO J.J. (2014) European Journal of Cancer Care 23, 562–569 Needs of family caregivers of advanced cancer patients: a survey in Shanghai of China It is important to understand the unmet needs of family caregivers of advanced cancer patients for developing and refining services to address the identified gaps in cancer care. To explore their needs in Chinese mainland and the possible factors associated with their needs, a self-developed questionnaire was used to survey a sample of 649 participants in 15 hospitals of Shanghai. The data were analysed using descriptive statistics, factor analysis, t-test, one-way ANOVA, and Fishers least significant difference t-test. All statistical analyses were performed using SPSS 13.0. Seven dimensions of needs (maintaining health, support from healthcare professionals, knowledge about the disease and treatment, support on funeral, information on hospice care, psychological support for patients and symptoms control for patients) were extracted from the results by factor analysis. The dimension with the highest score was ‘knowledge about the disease and treatment’ (4.37), and that with the lowest score named ‘support on funeral’ (2.85). The results showed that the factors including burden of payment for treatment, former caregiving experience of family caregivers and length of caregiving time were associated with their needs. Cancer services need to consider how to tailor resources and interventions to meet these needs of family caregivers of advanced cancer patients.
Keywords: cross-sectional survey, needs, family caregiver, Chinese mainland, advanced cancer.
INTRODUCTION A cancer diagnosis is often sudden and sparks an abrupt need for diagnostic and treatment decisions as well as active involvement by both the patients and the family members. Due to improved methods of treatment, cancer has developed into a continuous care problem. More patients live a long period with a diagnosis of advanced cancer (Micheli et al. 2002; Forman et al. 2003; Rolland 2005; Kim et al. 2007). For the patients themselves, there are profound physiological, psychological and economic issues associated with the diagnosis and treatment Correspondence address: Jijun Zhao, No. 168 Changhai Road, Shanghai 200433, China (e-mail: [email protected]).
Accepted 20 November 2013 DOI: 10.1111/ecc.12174 European Journal of Cancer Care, 2014, 23, 562–569
© 2014 John Wiley & Sons Ltd
of cancer and its symptoms (Hwang et al. 2004; Vissera et al. 2004). At the same time, family caregivers of cancer patients experience increased responsibilities and a variety of problems that arise from the various demands of their caregiving role (Riess-Sherwood et al. 2002; Cameron et al. 2004; Hwang et al. 2004; Vissera et al. 2004; Given et al. 2006; Caress et al. 2009). Family caregivers provide care for multiple and varied duration. It would be difficult, challenging and exhausting for family caregivers to providing care to a loved one with advanced cancer. This complex care challenges family members’ knowledge and skills as they are uncertain about what type of care to provide and, when and where to provide it, when to seek professional care, and how to provide the best ‘cancer care’ for their loved one (Given et al. 2012a,b). The care activities include planning, decision making, problem solving, accessing health system
Needs of family caregivers of advanced cancer patients
resources and negotiating the healthcare system (Given et al. 2012a,b). The caregiving experience places immense emotional, social, physical and financial burden on family caregivers, which could impact their well-beings and quality of life (Goldstein et al. 2004; Grunfeld et al. 2004; Barbaba et al. 2005). They provide extraordinary uncompensated care that is physically, emotionally, socially and financially demanding and results in the neglect of their own needs (Schubart et al. 2007; Blum & Sherman 2010). Thus, the needs of family caregivers of patients with advanced cancer become a healthcare issue as well as that of patients’, which should be addressed by professionals. Studies found that family caregivers of patients with advanced cancer reported psychological support and a range of information needs of a practical nature including pain control, weakness and fatigue, home care services, management of depression, management of weight loss and appetite loss (Wong et al. 2002; Harding & Higginson 2003; Bee et al. 2008; Caress et al. 2009). Yeh et al. (2009) found that the psychological well-being and the quality of the caregiver–patient relationship of family caregivers were found to be significantly positively correlated with caregivers’ health. Many family caregivers assume caregiving responsibilities without being fully aware of the burdens associated with this role, including time demands, physical exhaustion, financial costs, mental stress and even personal health risks (Rabow et al. 2004; Burton et al. 2012; Given et al. 2012a; Northouse et al. 2012). In China, according to the Confucian thought and the traditional culture, family is the focus of social relationship. Family caregiving is an important and an integral element of Chinese culture. They see caregiving as a repayment to their parents or family members. The tough caregiving responsibilities generate competing needs or demands. On the other hand, adult family caregivers’ needs assessment of adult patients may differ from that of patients younger than 18 years of age (Vissera et al. 2004). The first step to providing support to family caregivers is to understand the caregivers’ needs. Chinese researchers usually measured the needs of family members of cancer patients using self-developed questionnaires (Yang et al. 2001; Tan & Man 2005). The results showed that they had a strong desire for information and knowledge of illness and healthcare (Pan et al. 2000; Huang et al. 2006; Lei et al. 2006). And they may be lack of time for entertainment, and in long-term fatigue (Zhu & Yao 1997). However, the self-developed questionnaires in their studies were not tested on their reliability and validity. Additionally, the small sample size of these studies was another flaw. The findings from these self-developed tools © 2014 John Wiley & Sons Ltd
have not been tested. Therefore the reliability and validity could be questioned. To gain a broader understanding of the needs of family caregivers of cancer patients, we surveyed 649 family caregivers of advanced cancer patients in hospital settings, and analysed the characteristics of the needs and the factors associated with their needs. METHODS Instrument and participants A cross-sectional survey design was used for this study. A self-report questionnaire was developed to explore family caregivers’ needs in the study. The development phase of the questionnaire included three steps. First, potential items were created and compiled with the use of the authors’ clinical experiences and an extensive literature review(Zhu & Yao 1997; Schulz & Beach 1999; Xu 1999; Pan et al. 2000; Yang et al. 2001; Kristjanson & White 2002; Wackerbarth & Johnson 2002; Su et al. 2003; Lin & Tsao 2004; Tan & Man 2005; Hong 2006; Huang et al. 2006; Lei et al. 2006), which included published questionnaires and research findings. Forty-five Items were chosen. Second, the initial items that were developed and compiled by the investigators were reviewed by 19 expert reviewers. They were four oncologists, six specialist nurses in cancer care, four nursing managers, two nursing education specialists, a psychologist and two hospice care specialists. Each reviewer evaluated the items for language, content validity, relevance and completeness by responding to a structured set of questions. The items were then revised with the use of their critiques. Last, the items were screened with 25 family caregivers of cancer patients. They read each item and its response options and then described the thought processes that lead them to choose their response. The purpose was to identify ambiguous or misleading items. Revisions were performed. Finally, the original 27 items were remained, nine items were excluded for not definite meaning and not categorised and nine items were revised. The questionnaire formed consisted of 36 items. The items are measured on a five-point Likert scale with the alternatives: being in no need scored as 1 and badly in need scored as 5. Then a convenience sampling method was used to recruit participants in the study. The participants were the family caregivers of cancer patients who met the criteria as follows: (1) were 18 years or older; (2) were hospitalised; and (3) being diagnosed with any type of cancer at the stage IV according to TNM classification [TNM classification is a cancer-staging system that describes the extent of a person’s cancer: T describes the size of the original (primary) tumour and whether it has invaded 563
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nearby tissue, N describes nearby (regional) lymph nodes that are involved, M describes distant metastasis (spread of cancer from one part of the body to another)]. And they should also met the inclusion criteria as follows: (1) were 18 years or older; (2) were the intimate family caregiver and primary caregiver of patients, who takes care of cancer patients longest time and participates in decision making in treatment and care of patients; and (3) were fluent in Chinese. The study was conducted in the cancer-related departments in 15 hospitals in Shanghai, China. There were 1247 dyads of inpatients with cancer and their family caregivers met the inclusion criteria from July to December 2007. The convenience sampling method was used to recruit participants. Seven hundred dyads agreed to participate in the survey and were recruited. The demographic characteristics of family caregivers were surveyed, so were the patients’. The verbal informed consent was provided to the family caregivers. The following information was provided: This is a voluntary survey. Participants can stop answering the questions at any time without any penalty or loss of services or benefits. The data for this study are being collected anonymously. All information in this study will be kept anonymous and confidential. The time to fill out the questionnaire was estimated to less than 30 min. Six hundred and seventy-nine copies of the questionnaire were collected (97% response rate), of which 649 were eligible (95.58% eligible rate). The questionnaires with more than three items not answered were considered incomplete. Finally, 30 incomplete questionnaires were rejected.
Statistical analysis The scores of the individual item, the dimension and the total need of family caregivers of the 649 advanced cancer patients were analysed and reported. The dimensional score was calculated as the mean of the items’ scores of that dimension, whereas the total score was calculated as the mean of all the items’ scores. The total score of the participants was compared using one-way analysis of variance tests (ANOVA, when the item was categorised into three or more groups) or t-tests (when the item was categorised into two groups), while the Levene’s test was used to test the homogeneity of variance. Then the total score was compared using Fishers least significant difference t-test (LSD t-test) when there was statistical significance in ANOVA. The reliability and split-half reliability was measured with Cronbach’s α Coefficient and Spearman-Brown Coefficient (Bland & Altman 1997). Factor analysis method was used to test the structural validity of the questionnaire together with principal 564
components analysis and Varimax orthogonal rotation method. All statistical analysis was performed using SPSS 13.0 (Statistical Package for the Social Sciences, version 13.0), and taking P-value ≤ 0.05 as the significant standard. Ethical consideration The Committee on Ethics of Biomedicine Research of Second Military Medical University approved the study. Because this was a questionnaire study, the Ethical Review Committee did not require written informed consent. Therefore, verbal informed consent was taken. All the information gathered was treated confidentially and anonymously: it would never be used for any other purpose, other than this research. RESULTS Demographic information of subjects and patients The demographic characteristics of the family caregivers and patients were summarised in Tables 1 and 2. A total of 649 family caregivers (280 male, 369 female) of cancer patients in hospital were recruited. The caregivers aged from 20 years to 86 years with an average age of 49.20 (SD = 13.18). A total of 163 (25.1%) reported having taken care of patients for no more than 3 months; 160 (24.7%) reported 3–6 months; 133 (20.5%), 101 (15.5%), 67 (10.3%) and 25 (3.9%) reported 6 months to 1 year, 1 to 2 years, 2 to 5 years and more than 5 years respectively. A total of 576 (88.8%) did not have similar experience in caregiving the patients. For the patients, 179 (27.6%) aged from 46 to 55 years; 160 (24.7%) aged from 56 to 65 years; and 37 (5.7%) aged from 18 to 35 years. More than a half patients (n = 418, 64.4%) had self-care ability in daily life. Only 57 (8.8%) patients had no burden of payment for treatment. Analysis of variables The participants had high levels of needs for all 36 items, and the mean score was 3.60 (SD = 0.75). The dimension with the highest average score was ‘knowledge about the disease and treatment’ (X = 4.37 , SD = 0.81), followed by the dimension ‘symptoms control for patients’ (X = 4.26 , SD = 0.95), the dimension ‘support from healthcare professionals’ (X = 4.11, SD = 0.84), and so on. And the dimension with the lowest score was ‘support on funeral’ ( X = 2.85 , SD = 1.30). Table 3 shows the details. Results of the univariate analyses (independent samples t-tests or one-way ANOVA tests) showed that there were © 2014 John Wiley & Sons Ltd
Needs of family caregivers of advanced cancer patients
Table 1. Socio-demographic characteristics of family caregivers (n = 649) n
%
Gender
Male Female
280 369
43.1 56.9
Educational background
No formal education Primary school Secondary school and high school College Undergraduate or above
21 59 384 121 64
3.2 9.1 59.2 18.6 9.9
Health condition
Excellent Good Fair Poor
306 255 74 14
47.1 39.3 11.4 2.2
Career
Worker Farmer Civil servant Technologist Service people Retired Other
143 64 47 48 76 197 74
22.0 9.9 7.2 7.4 11.7 30.4 11.4
Work status
Full-time Part-time Temporary leave for taking care of patients Resigned for taking care of patients Retired Other
193 55 85 15 245 56
29.7 8.5 13.1 2.3 37.8 8.6
Relationship with patient
Spouse Son or daughter Parent Brother or sister Other
336 196 47 42 28
51.8 30.2 7.2 6.5 4.3
Length of caregiving
Less than 3 months 3–6 months 6 months–1 year 1–2 years 2–5 years More than 5 years
163 160 133 101 67 25
25.1 24.7 20.5 15.5 10.3 3.9
Former experience in caregiving
No Yes
576 73
88.8 11.2
statistical significant differences in the needs of some different socio-demographic characteristics of family caregivers including participants’ jobs, current condition of employment, time of caregiving, former experience in caregiving and patients’ burden of payment for treatment (F = 3.796, 3.534, 2.161 and t = 2.543 and F = 3.107 respectively). The details were shown in Table 4. Then according to the results of Fishers least significant difference t-tests, the total need of family caregivers who had retired was lower than those of people who had full-time or parttime jobs (t = 0.2440 and 0.3256, P < 0.05). Caregivers who had taken care of patients for more than 5 years had lower need than other groups (t = 0.4940, 0.4983, 0.5034, 0.4584 and 0.5025 respectively, P < 0.01). When patients had a little economic burden of paying for treatment, the total need of their family caregivers was higher than those of © 2014 John Wiley & Sons Ltd
people whose patients had moderate burden or heavy burden (t = 0.1456 and 0.2306, P < 0.05). The details were showed in Table 4.
Validity of the questionnaire The content validity of the questionnaire was evaluated by logic analysis. The questionnaire was formed via literature review and group discussion. Therefore, the process of developing the questionnaire was logical and reasonable. In the current study, factor analysis was used to test the construct validity of the questionnaire. Before the factor analysis, Ball Barlett and Kaiser-Meyer-Olkin (KMO) tests were performed to determine whether the data were suitable for factor analysis. The KMO value was 0.930. Ball Barlett test showed that the data were not unit 565
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Table 2. Socio-demographic characteristics of patients (n = 649) Age
Religion Treatment payment
Burden of payment for treatment
Disclosure of disease
Self-care situation
18–35 36–45 46–55 56–65 66–75 >75 Yes No At public expense Health insurance At own expense Other No burden A little burden Moderate burden Heavy burden Fully Partly A little Not at all Full Most Part Not at all
n
%
37 86 179 160 111 76 547 102 35 449 148 17 57 211 302 79 247 263 96 43 190 228 156 75
5.7 13.3 27.6 24.6 17.1 11.7 84.3 15.7 5.4 69.2 22.8 2.6 8.8 32.5 46.5 12.2 38.1 40.5 14.8 6.6 29.3 35.1 24.0 11.6
correlation matrix (P < 0.001). Principal components analysis with Varimax rotation was used. The principles of factor extraction were: (1) eigenvalue of 1 or higher; (2) complying with the Cartel steep-order test principles (Song & He 2007); (3) explaining variance in total of 60% or higher; (4) each containing at least two items; (5) meaning of items being consistent with the professional context; and (6) being easier to be named. The analysis extracted seven factors that explained 66.148% of the variance and covered 36 items. The names and the descriptions of the factors were listed in Table 3.
Reliability of the questionnaire The reliability of the questionnaire, as well as the reliability of the questions of each dimension, was measured with Cronbach’s α Coefficient. Based on the rules of thumb found in George and Mallery (2003), an alpha above 0.90 showed that the general reliability of the scale was ‘excellent’. Results showed that Cronbach’s α Coefficient for the overall questionnaire was 0.902 and Cronbach’s α Coefficient for the dimensions were ≥0.85 except ‘Information on hospice care’ and ‘Psychological support for patients’ (see Table 3). Spearman correlation coefficient (Spearman-Brown) was also calculated using SPSS 13.0. The result (0.772 > 0.7) indicated that the split-half reliability of the questionnaire was acceptable. 566
DISCUSSIONS Needs of family caregivers The results of this survey identified that family caregivers’ needs of advanced cancer patients in hospital settings had high unmet needs. These were particularly distinct with regards to needs of knowledge about the disease and treatment and support from healthcare professionals. The survey showed high levels of information needs and support care needs. Needs of knowledge about the disease and treatment were particularly high in family caregivers when patients’ self-care abilities were poor. This might be due to that a patient in bad condition was likely to need more physical care and provoke more concerns for caregivers (Kurtz et al. 1994). A strong need for information in family caregivers of cancer patients is not new. Good information has been identified as one of the main needs of carers (Pan et al. 2000; Wackerbarth & Johnson 2002; Lin & Tsao 2004; Huang et al. 2006; Lei et al. 2006; Beaver & Witham 2007). Needs associated with symptoms control of patients was higher than the needs of psychological support for patients. This might mean that a series of symptoms of cancer patients were the stronger stimulus to family caregivers. This was consistent with Maslow’s theory of human motivation. Compared with the psychological needs, the physical needs were the priority issues (Maslow 1943). The study found that ensuring patients’ comfort was the first need of family caregivers of cancer patients (Su et al. 2003). Chinese family caregivers tended to pay less attention to their own health. Only 77.9% of family caregivers sampled in this survey reported needs of maintaining health. Additionally, lower needs of information on hospice care and support on funeral were reported. Only 40.6% respondents reported needs support on funeral. The main reason may lie in the Chinese traditional culture. Western culture values autonomy and independence and does not encourage over-sacrificing for parents while Chinese culture emphasises devotion to parents, social orientation and interdependence (Dai & Dimond 1998). Traditional Chinese values such as Confucianism placed a heavy emphasis on filial piety and mutual support among kinship groups. Confucianism is defined as ‘the ethical teachings formulated by Confucius and introduced into Chinese religion, emphasizing devotion to parents, family, and friends, cultivation of the mind, self-control and just social activity’ (Neufeldt & Guralnik 1988). Consequently, the focus of the whole family was the cancer patients. The caregiving task was the obligation. And family caregivers’ health was somewhat neglected. Also, in Chinese cultural context, death is described miserable and horrible. It is taboo to talk about © 2014 John Wiley & Sons Ltd
Needs of family caregivers of advanced cancer patients
Table 3. Family caregivers’ score of needs on dimensions Dimension (amount of items) Maintaining health (8) Support from healthcare professionals (7) Knowledge about the disease and treatment (5) Support on funeral (5) Information on hospice care (4) Psychological support for patients (4) Symptoms control for patients (3) Total
Eigenvalue
Proportion (%)
Cronbach’s α
Score ( X ± SD)
4.626 3.989 3.913
12.850 11.081 10.870
0.890 0.879 0.893
3.48 ± 1.04 4.11 ± 0.84 4.37 ± 0.81
3.791 2.750 2.537 2.206
10.531 7.638 7.048 6.129 66.148
0.880 0.797 0.785 0.853 0.902
2.85 ± 1.30 3.01 ± 1.14 3.08 ± 1.18 4.26 ± 0.95 3.60 ± 0.75
Table 4. Univariate analyses of the needs Factors Career of family caregivers Worker Farmer Civil servant Technologist Service people Retired Other Work status of family caregivers Full-time Part-time Temporary leave for taking care of patients Resigned for taking care of patients Retired Other Length of caregiving Less than 3 months 3–6 months 6 months–1 year 1–2 years 2–5 years More than 5 years Former experience in caregiving No Yes Burden of payment for treatment No burden A little burden Moderate burden Heavy burden
n 143 64 47 48 76 197 74
3.73 ± 0.68 3.59 ± 0.70 3.76 ± 0.72 3.74 ± 0.76 3.61 ± 0.68 3.40 ± 0.79 3.65 ± 0.78
193 55 85 15 245 56
3.72 ± 0.69 3.80 ± 0.61 3.63 ± 0.68 3.45 ± 0.95 3.47 ± 0.79 3.50 ± 0.83
163 160 133 101 67 25
3.62 ± 0.72 3.62 ± 0.71 3.63 ± 0.74 3.58 ± 0.77 3.63 ± 0.80 3.12 ± 0.84
576 73
3.81 ± 0.67 3.57 ± 0.75
57 211 302 79
3.73 ± 0.75 3.69 ± 0.74 3.54 ± 0.75 3.46 ± 0.75
death (Vachon 1999). In addition, people lack death education. As a result, it might be difficult for family caregivers to accept hospice care and talk about funeral with professionals. It may be filial or virtue to let patients receive treatment until death.
Factors associated with the needs Lei et al. (2006) found that caregivers’ information needs were associated with some aspects such as relationship of caregivers and patients, caregivers’ education background © 2014 John Wiley & Sons Ltd
Score of need ( X ± SD)
F(t)
P-value
F = 3.796
0.001
F = 3.534
0.004
F = 2.161
0.047
t = 2.543
0.011
F = 3.107
0.026
and so on. Our study also showed that the factors might associated with the needs of family caregivers of advanced cancer patients including burden of payment for treatment, work status of family caregivers (retired vs. fulltime job or part-time job), former experience of family caregivers in caregiving and length of caregiving. The score of needs of family caregivers who had retired was lower than those of people who had full-time or part-time jobs. As the caregivers, people with work might assume greater pressure and need more help to adapt to the role. Caregivers who had taken care of patients for more 567
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than 5 years had lower level of total need than other groups, and caregivers who didn’t have experience in caregiving had higher level of total need than that of had experience in caregiving. Some studies suggested that carers’ distress reduced over time after diagnosis (Hoskins 1995). Family caregivers also make their own personal adjustments facing the illness and the role of caring (Ezer et al. 2006). When patients had a little economic burden of paying for treatment, the average score of total need of their family caregivers was higher than those of people whose patients had moderate burden or heavy burden. The families of cancer patients often confront payment burden at the current medical system in the Chinese Mainland. The relations between economic burden and needs may not so significant in western countries for better medicare.
Conclusion Results of this study provide a profile of the Chinese caregivers’ needs of advanced cancer patients in hospital settings. The findings showed that due to the illness of patients, family caregivers in the Chinese Mainland need most was how to care cancer patients well. They might demand more knowledge about the disease, better symptoms control and psychological support for patients. In different cultural context between western countries and
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the Chinese Mainland, the needs of support on funeral and information on hospice care might be very different. In Chinese mainland, they were low in this survey. Compared with other surveys, the needs shown in our study were more concrete and definite. In practice, we should take comprehensive consideration of family caregivers’needs of advanced cancer patients. Additionally, in the survey, caregivers paid less attention to their own health. This might increase the morbidity risk plus to tough caregiving burden. We also showed some possible factors associated with caregivers’ needs. These factors might be helpful for professionals to detect the urgent needs of family caregivers of advanced cancer patients. The findings of this study would give new ideas of Chinese family caregivers’ needs, which we should pay more attention to. Due to different cultural context, the needs in different countries or regions may have different characteristics. The relation between economic burden and needs was one example. ACKNOWLEDGEMENTS The study was supported by the National Natural Science Foundation of China (Grant No.70973136). We are grateful to all the investigators in the 15 hospitals of the survey. The collaboration of all the participants in the study was also valuable and cherished.
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Original article
Needs of family caregivers of advanced cancer patients: a survey in Shanghai of China J. CUI, PHD, School of Nursing, Second Military Medical University, Shanghai, L.J. SONG, MS, Department of Nursing, Shanghai Medical College, Shanghai, L.J. ZHOU, PHD, School of Nursing, Second Military Medical University, Shanghai, H. MENG, MD, Department of Health Statistics, Second Military Medical University, Shanghai, & J.J. ZHAO,
BSC,
Department of Nursing, Changhai Hospital, Second Military Medical University, Shanghai, China
CUI J., SONG L.J., ZHOU L.J., MENG H. & ZHAO J.J. (2014) European Journal of Cancer Care 23, 562–569 Needs of family caregivers of advanced cancer patients: a survey in Shanghai of China It is important to understand the unmet needs of family caregivers of advanced cancer patients for developing and refining services to address the identified gaps in cancer care. To explore their needs in Chinese mainland and the possible factors associated with their needs, a self-developed questionnaire was used to survey a sample of 649 participants in 15 hospitals of Shanghai. The data were analysed using descriptive statistics, factor analysis, t-test, one-way ANOVA, and Fishers least significant difference t-test. All statistical analyses were performed using SPSS 13.0. Seven dimensions of needs (maintaining health, support from healthcare professionals, knowledge about the disease and treatment, support on funeral, information on hospice care, psychological support for patients and symptoms control for patients) were extracted from the results by factor analysis. The dimension with the highest score was ‘knowledge about the disease and treatment’ (4.37), and that with the lowest score named ‘support on funeral’ (2.85). The results showed that the factors including burden of payment for treatment, former caregiving experience of family caregivers and length of caregiving time were associated with their needs. Cancer services need to consider how to tailor resources and interventions to meet these needs of family caregivers of advanced cancer patients.
Keywords: cross-sectional survey, needs, family caregiver, Chinese mainland, advanced cancer.
INTRODUCTION A cancer diagnosis is often sudden and sparks an abrupt need for diagnostic and treatment decisions as well as active involvement by both the patients and the family members. Due to improved methods of treatment, cancer has developed into a continuous care problem. More patients live a long period with a diagnosis of advanced cancer (Micheli et al. 2002; Forman et al. 2003; Rolland 2005; Kim et al. 2007). For the patients themselves, there are profound physiological, psychological and economic issues associated with the diagnosis and treatment Correspondence address: Jijun Zhao, No. 168 Changhai Road, Shanghai 200433, China (e-mail: [email protected]).
Accepted 20 November 2013 DOI: 10.1111/ecc.12174 European Journal of Cancer Care, 2014, 23, 562–569
© 2014 John Wiley & Sons Ltd
of cancer and its symptoms (Hwang et al. 2004; Vissera et al. 2004). At the same time, family caregivers of cancer patients experience increased responsibilities and a variety of problems that arise from the various demands of their caregiving role (Riess-Sherwood et al. 2002; Cameron et al. 2004; Hwang et al. 2004; Vissera et al. 2004; Given et al. 2006; Caress et al. 2009). Family caregivers provide care for multiple and varied duration. It would be difficult, challenging and exhausting for family caregivers to providing care to a loved one with advanced cancer. This complex care challenges family members’ knowledge and skills as they are uncertain about what type of care to provide and, when and where to provide it, when to seek professional care, and how to provide the best ‘cancer care’ for their loved one (Given et al. 2012a,b). The care activities include planning, decision making, problem solving, accessing health system
Needs of family caregivers of advanced cancer patients
resources and negotiating the healthcare system (Given et al. 2012a,b). The caregiving experience places immense emotional, social, physical and financial burden on family caregivers, which could impact their well-beings and quality of life (Goldstein et al. 2004; Grunfeld et al. 2004; Barbaba et al. 2005). They provide extraordinary uncompensated care that is physically, emotionally, socially and financially demanding and results in the neglect of their own needs (Schubart et al. 2007; Blum & Sherman 2010). Thus, the needs of family caregivers of patients with advanced cancer become a healthcare issue as well as that of patients’, which should be addressed by professionals. Studies found that family caregivers of patients with advanced cancer reported psychological support and a range of information needs of a practical nature including pain control, weakness and fatigue, home care services, management of depression, management of weight loss and appetite loss (Wong et al. 2002; Harding & Higginson 2003; Bee et al. 2008; Caress et al. 2009). Yeh et al. (2009) found that the psychological well-being and the quality of the caregiver–patient relationship of family caregivers were found to be significantly positively correlated with caregivers’ health. Many family caregivers assume caregiving responsibilities without being fully aware of the burdens associated with this role, including time demands, physical exhaustion, financial costs, mental stress and even personal health risks (Rabow et al. 2004; Burton et al. 2012; Given et al. 2012a; Northouse et al. 2012). In China, according to the Confucian thought and the traditional culture, family is the focus of social relationship. Family caregiving is an important and an integral element of Chinese culture. They see caregiving as a repayment to their parents or family members. The tough caregiving responsibilities generate competing needs or demands. On the other hand, adult family caregivers’ needs assessment of adult patients may differ from that of patients younger than 18 years of age (Vissera et al. 2004). The first step to providing support to family caregivers is to understand the caregivers’ needs. Chinese researchers usually measured the needs of family members of cancer patients using self-developed questionnaires (Yang et al. 2001; Tan & Man 2005). The results showed that they had a strong desire for information and knowledge of illness and healthcare (Pan et al. 2000; Huang et al. 2006; Lei et al. 2006). And they may be lack of time for entertainment, and in long-term fatigue (Zhu & Yao 1997). However, the self-developed questionnaires in their studies were not tested on their reliability and validity. Additionally, the small sample size of these studies was another flaw. The findings from these self-developed tools © 2014 John Wiley & Sons Ltd
have not been tested. Therefore the reliability and validity could be questioned. To gain a broader understanding of the needs of family caregivers of cancer patients, we surveyed 649 family caregivers of advanced cancer patients in hospital settings, and analysed the characteristics of the needs and the factors associated with their needs. METHODS Instrument and participants A cross-sectional survey design was used for this study. A self-report questionnaire was developed to explore family caregivers’ needs in the study. The development phase of the questionnaire included three steps. First, potential items were created and compiled with the use of the authors’ clinical experiences and an extensive literature review(Zhu & Yao 1997; Schulz & Beach 1999; Xu 1999; Pan et al. 2000; Yang et al. 2001; Kristjanson & White 2002; Wackerbarth & Johnson 2002; Su et al. 2003; Lin & Tsao 2004; Tan & Man 2005; Hong 2006; Huang et al. 2006; Lei et al. 2006), which included published questionnaires and research findings. Forty-five Items were chosen. Second, the initial items that were developed and compiled by the investigators were reviewed by 19 expert reviewers. They were four oncologists, six specialist nurses in cancer care, four nursing managers, two nursing education specialists, a psychologist and two hospice care specialists. Each reviewer evaluated the items for language, content validity, relevance and completeness by responding to a structured set of questions. The items were then revised with the use of their critiques. Last, the items were screened with 25 family caregivers of cancer patients. They read each item and its response options and then described the thought processes that lead them to choose their response. The purpose was to identify ambiguous or misleading items. Revisions were performed. Finally, the original 27 items were remained, nine items were excluded for not definite meaning and not categorised and nine items were revised. The questionnaire formed consisted of 36 items. The items are measured on a five-point Likert scale with the alternatives: being in no need scored as 1 and badly in need scored as 5. Then a convenience sampling method was used to recruit participants in the study. The participants were the family caregivers of cancer patients who met the criteria as follows: (1) were 18 years or older; (2) were hospitalised; and (3) being diagnosed with any type of cancer at the stage IV according to TNM classification [TNM classification is a cancer-staging system that describes the extent of a person’s cancer: T describes the size of the original (primary) tumour and whether it has invaded 563
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nearby tissue, N describes nearby (regional) lymph nodes that are involved, M describes distant metastasis (spread of cancer from one part of the body to another)]. And they should also met the inclusion criteria as follows: (1) were 18 years or older; (2) were the intimate family caregiver and primary caregiver of patients, who takes care of cancer patients longest time and participates in decision making in treatment and care of patients; and (3) were fluent in Chinese. The study was conducted in the cancer-related departments in 15 hospitals in Shanghai, China. There were 1247 dyads of inpatients with cancer and their family caregivers met the inclusion criteria from July to December 2007. The convenience sampling method was used to recruit participants. Seven hundred dyads agreed to participate in the survey and were recruited. The demographic characteristics of family caregivers were surveyed, so were the patients’. The verbal informed consent was provided to the family caregivers. The following information was provided: This is a voluntary survey. Participants can stop answering the questions at any time without any penalty or loss of services or benefits. The data for this study are being collected anonymously. All information in this study will be kept anonymous and confidential. The time to fill out the questionnaire was estimated to less than 30 min. Six hundred and seventy-nine copies of the questionnaire were collected (97% response rate), of which 649 were eligible (95.58% eligible rate). The questionnaires with more than three items not answered were considered incomplete. Finally, 30 incomplete questionnaires were rejected.
Statistical analysis The scores of the individual item, the dimension and the total need of family caregivers of the 649 advanced cancer patients were analysed and reported. The dimensional score was calculated as the mean of the items’ scores of that dimension, whereas the total score was calculated as the mean of all the items’ scores. The total score of the participants was compared using one-way analysis of variance tests (ANOVA, when the item was categorised into three or more groups) or t-tests (when the item was categorised into two groups), while the Levene’s test was used to test the homogeneity of variance. Then the total score was compared using Fishers least significant difference t-test (LSD t-test) when there was statistical significance in ANOVA. The reliability and split-half reliability was measured with Cronbach’s α Coefficient and Spearman-Brown Coefficient (Bland & Altman 1997). Factor analysis method was used to test the structural validity of the questionnaire together with principal 564
components analysis and Varimax orthogonal rotation method. All statistical analysis was performed using SPSS 13.0 (Statistical Package for the Social Sciences, version 13.0), and taking P-value ≤ 0.05 as the significant standard. Ethical consideration The Committee on Ethics of Biomedicine Research of Second Military Medical University approved the study. Because this was a questionnaire study, the Ethical Review Committee did not require written informed consent. Therefore, verbal informed consent was taken. All the information gathered was treated confidentially and anonymously: it would never be used for any other purpose, other than this research. RESULTS Demographic information of subjects and patients The demographic characteristics of the family caregivers and patients were summarised in Tables 1 and 2. A total of 649 family caregivers (280 male, 369 female) of cancer patients in hospital were recruited. The caregivers aged from 20 years to 86 years with an average age of 49.20 (SD = 13.18). A total of 163 (25.1%) reported having taken care of patients for no more than 3 months; 160 (24.7%) reported 3–6 months; 133 (20.5%), 101 (15.5%), 67 (10.3%) and 25 (3.9%) reported 6 months to 1 year, 1 to 2 years, 2 to 5 years and more than 5 years respectively. A total of 576 (88.8%) did not have similar experience in caregiving the patients. For the patients, 179 (27.6%) aged from 46 to 55 years; 160 (24.7%) aged from 56 to 65 years; and 37 (5.7%) aged from 18 to 35 years. More than a half patients (n = 418, 64.4%) had self-care ability in daily life. Only 57 (8.8%) patients had no burden of payment for treatment. Analysis of variables The participants had high levels of needs for all 36 items, and the mean score was 3.60 (SD = 0.75). The dimension with the highest average score was ‘knowledge about the disease and treatment’ (X = 4.37 , SD = 0.81), followed by the dimension ‘symptoms control for patients’ (X = 4.26 , SD = 0.95), the dimension ‘support from healthcare professionals’ (X = 4.11, SD = 0.84), and so on. And the dimension with the lowest score was ‘support on funeral’ ( X = 2.85 , SD = 1.30). Table 3 shows the details. Results of the univariate analyses (independent samples t-tests or one-way ANOVA tests) showed that there were © 2014 John Wiley & Sons Ltd
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Table 1. Socio-demographic characteristics of family caregivers (n = 649) n
%
Gender
Male Female
280 369
43.1 56.9
Educational background
No formal education Primary school Secondary school and high school College Undergraduate or above
21 59 384 121 64
3.2 9.1 59.2 18.6 9.9
Health condition
Excellent Good Fair Poor
306 255 74 14
47.1 39.3 11.4 2.2
Career
Worker Farmer Civil servant Technologist Service people Retired Other
143 64 47 48 76 197 74
22.0 9.9 7.2 7.4 11.7 30.4 11.4
Work status
Full-time Part-time Temporary leave for taking care of patients Resigned for taking care of patients Retired Other
193 55 85 15 245 56
29.7 8.5 13.1 2.3 37.8 8.6
Relationship with patient
Spouse Son or daughter Parent Brother or sister Other
336 196 47 42 28
51.8 30.2 7.2 6.5 4.3
Length of caregiving
Less than 3 months 3–6 months 6 months–1 year 1–2 years 2–5 years More than 5 years
163 160 133 101 67 25
25.1 24.7 20.5 15.5 10.3 3.9
Former experience in caregiving
No Yes
576 73
88.8 11.2
statistical significant differences in the needs of some different socio-demographic characteristics of family caregivers including participants’ jobs, current condition of employment, time of caregiving, former experience in caregiving and patients’ burden of payment for treatment (F = 3.796, 3.534, 2.161 and t = 2.543 and F = 3.107 respectively). The details were shown in Table 4. Then according to the results of Fishers least significant difference t-tests, the total need of family caregivers who had retired was lower than those of people who had full-time or parttime jobs (t = 0.2440 and 0.3256, P < 0.05). Caregivers who had taken care of patients for more than 5 years had lower need than other groups (t = 0.4940, 0.4983, 0.5034, 0.4584 and 0.5025 respectively, P < 0.01). When patients had a little economic burden of paying for treatment, the total need of their family caregivers was higher than those of © 2014 John Wiley & Sons Ltd
people whose patients had moderate burden or heavy burden (t = 0.1456 and 0.2306, P < 0.05). The details were showed in Table 4.
Validity of the questionnaire The content validity of the questionnaire was evaluated by logic analysis. The questionnaire was formed via literature review and group discussion. Therefore, the process of developing the questionnaire was logical and reasonable. In the current study, factor analysis was used to test the construct validity of the questionnaire. Before the factor analysis, Ball Barlett and Kaiser-Meyer-Olkin (KMO) tests were performed to determine whether the data were suitable for factor analysis. The KMO value was 0.930. Ball Barlett test showed that the data were not unit 565
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Table 2. Socio-demographic characteristics of patients (n = 649) Age
Religion Treatment payment
Burden of payment for treatment
Disclosure of disease
Self-care situation
18–35 36–45 46–55 56–65 66–75 >75 Yes No At public expense Health insurance At own expense Other No burden A little burden Moderate burden Heavy burden Fully Partly A little Not at all Full Most Part Not at all
n
%
37 86 179 160 111 76 547 102 35 449 148 17 57 211 302 79 247 263 96 43 190 228 156 75
5.7 13.3 27.6 24.6 17.1 11.7 84.3 15.7 5.4 69.2 22.8 2.6 8.8 32.5 46.5 12.2 38.1 40.5 14.8 6.6 29.3 35.1 24.0 11.6
correlation matrix (P < 0.001). Principal components analysis with Varimax rotation was used. The principles of factor extraction were: (1) eigenvalue of 1 or higher; (2) complying with the Cartel steep-order test principles (Song & He 2007); (3) explaining variance in total of 60% or higher; (4) each containing at least two items; (5) meaning of items being consistent with the professional context; and (6) being easier to be named. The analysis extracted seven factors that explained 66.148% of the variance and covered 36 items. The names and the descriptions of the factors were listed in Table 3.
Reliability of the questionnaire The reliability of the questionnaire, as well as the reliability of the questions of each dimension, was measured with Cronbach’s α Coefficient. Based on the rules of thumb found in George and Mallery (2003), an alpha above 0.90 showed that the general reliability of the scale was ‘excellent’. Results showed that Cronbach’s α Coefficient for the overall questionnaire was 0.902 and Cronbach’s α Coefficient for the dimensions were ≥0.85 except ‘Information on hospice care’ and ‘Psychological support for patients’ (see Table 3). Spearman correlation coefficient (Spearman-Brown) was also calculated using SPSS 13.0. The result (0.772 > 0.7) indicated that the split-half reliability of the questionnaire was acceptable. 566
DISCUSSIONS Needs of family caregivers The results of this survey identified that family caregivers’ needs of advanced cancer patients in hospital settings had high unmet needs. These were particularly distinct with regards to needs of knowledge about the disease and treatment and support from healthcare professionals. The survey showed high levels of information needs and support care needs. Needs of knowledge about the disease and treatment were particularly high in family caregivers when patients’ self-care abilities were poor. This might be due to that a patient in bad condition was likely to need more physical care and provoke more concerns for caregivers (Kurtz et al. 1994). A strong need for information in family caregivers of cancer patients is not new. Good information has been identified as one of the main needs of carers (Pan et al. 2000; Wackerbarth & Johnson 2002; Lin & Tsao 2004; Huang et al. 2006; Lei et al. 2006; Beaver & Witham 2007). Needs associated with symptoms control of patients was higher than the needs of psychological support for patients. This might mean that a series of symptoms of cancer patients were the stronger stimulus to family caregivers. This was consistent with Maslow’s theory of human motivation. Compared with the psychological needs, the physical needs were the priority issues (Maslow 1943). The study found that ensuring patients’ comfort was the first need of family caregivers of cancer patients (Su et al. 2003). Chinese family caregivers tended to pay less attention to their own health. Only 77.9% of family caregivers sampled in this survey reported needs of maintaining health. Additionally, lower needs of information on hospice care and support on funeral were reported. Only 40.6% respondents reported needs support on funeral. The main reason may lie in the Chinese traditional culture. Western culture values autonomy and independence and does not encourage over-sacrificing for parents while Chinese culture emphasises devotion to parents, social orientation and interdependence (Dai & Dimond 1998). Traditional Chinese values such as Confucianism placed a heavy emphasis on filial piety and mutual support among kinship groups. Confucianism is defined as ‘the ethical teachings formulated by Confucius and introduced into Chinese religion, emphasizing devotion to parents, family, and friends, cultivation of the mind, self-control and just social activity’ (Neufeldt & Guralnik 1988). Consequently, the focus of the whole family was the cancer patients. The caregiving task was the obligation. And family caregivers’ health was somewhat neglected. Also, in Chinese cultural context, death is described miserable and horrible. It is taboo to talk about © 2014 John Wiley & Sons Ltd
Needs of family caregivers of advanced cancer patients
Table 3. Family caregivers’ score of needs on dimensions Dimension (amount of items) Maintaining health (8) Support from healthcare professionals (7) Knowledge about the disease and treatment (5) Support on funeral (5) Information on hospice care (4) Psychological support for patients (4) Symptoms control for patients (3) Total
Eigenvalue
Proportion (%)
Cronbach’s α
Score ( X ± SD)
4.626 3.989 3.913
12.850 11.081 10.870
0.890 0.879 0.893
3.48 ± 1.04 4.11 ± 0.84 4.37 ± 0.81
3.791 2.750 2.537 2.206
10.531 7.638 7.048 6.129 66.148
0.880 0.797 0.785 0.853 0.902
2.85 ± 1.30 3.01 ± 1.14 3.08 ± 1.18 4.26 ± 0.95 3.60 ± 0.75
Table 4. Univariate analyses of the needs Factors Career of family caregivers Worker Farmer Civil servant Technologist Service people Retired Other Work status of family caregivers Full-time Part-time Temporary leave for taking care of patients Resigned for taking care of patients Retired Other Length of caregiving Less than 3 months 3–6 months 6 months–1 year 1–2 years 2–5 years More than 5 years Former experience in caregiving No Yes Burden of payment for treatment No burden A little burden Moderate burden Heavy burden
n 143 64 47 48 76 197 74
3.73 ± 0.68 3.59 ± 0.70 3.76 ± 0.72 3.74 ± 0.76 3.61 ± 0.68 3.40 ± 0.79 3.65 ± 0.78
193 55 85 15 245 56
3.72 ± 0.69 3.80 ± 0.61 3.63 ± 0.68 3.45 ± 0.95 3.47 ± 0.79 3.50 ± 0.83
163 160 133 101 67 25
3.62 ± 0.72 3.62 ± 0.71 3.63 ± 0.74 3.58 ± 0.77 3.63 ± 0.80 3.12 ± 0.84
576 73
3.81 ± 0.67 3.57 ± 0.75
57 211 302 79
3.73 ± 0.75 3.69 ± 0.74 3.54 ± 0.75 3.46 ± 0.75
death (Vachon 1999). In addition, people lack death education. As a result, it might be difficult for family caregivers to accept hospice care and talk about funeral with professionals. It may be filial or virtue to let patients receive treatment until death.
Factors associated with the needs Lei et al. (2006) found that caregivers’ information needs were associated with some aspects such as relationship of caregivers and patients, caregivers’ education background © 2014 John Wiley & Sons Ltd
Score of need ( X ± SD)
F(t)
P-value
F = 3.796
0.001
F = 3.534
0.004
F = 2.161
0.047
t = 2.543
0.011
F = 3.107
0.026
and so on. Our study also showed that the factors might associated with the needs of family caregivers of advanced cancer patients including burden of payment for treatment, work status of family caregivers (retired vs. fulltime job or part-time job), former experience of family caregivers in caregiving and length of caregiving. The score of needs of family caregivers who had retired was lower than those of people who had full-time or part-time jobs. As the caregivers, people with work might assume greater pressure and need more help to adapt to the role. Caregivers who had taken care of patients for more 567
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than 5 years had lower level of total need than other groups, and caregivers who didn’t have experience in caregiving had higher level of total need than that of had experience in caregiving. Some studies suggested that carers’ distress reduced over time after diagnosis (Hoskins 1995). Family caregivers also make their own personal adjustments facing the illness and the role of caring (Ezer et al. 2006). When patients had a little economic burden of paying for treatment, the average score of total need of their family caregivers was higher than those of people whose patients had moderate burden or heavy burden. The families of cancer patients often confront payment burden at the current medical system in the Chinese Mainland. The relations between economic burden and needs may not so significant in western countries for better medicare.
Conclusion Results of this study provide a profile of the Chinese caregivers’ needs of advanced cancer patients in hospital settings. The findings showed that due to the illness of patients, family caregivers in the Chinese Mainland need most was how to care cancer patients well. They might demand more knowledge about the disease, better symptoms control and psychological support for patients. In different cultural context between western countries and
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the Chinese Mainland, the needs of support on funeral and information on hospice care might be very different. In Chinese mainland, they were low in this survey. Compared with other surveys, the needs shown in our study were more concrete and definite. In practice, we should take comprehensive consideration of family caregivers’needs of advanced cancer patients. Additionally, in the survey, caregivers paid less attention to their own health. This might increase the morbidity risk plus to tough caregiving burden. We also showed some possible factors associated with caregivers’ needs. These factors might be helpful for professionals to detect the urgent needs of family caregivers of advanced cancer patients. The findings of this study would give new ideas of Chinese family caregivers’ needs, which we should pay more attention to. Due to different cultural context, the needs in different countries or regions may have different characteristics. The relation between economic burden and needs was one example. ACKNOWLEDGEMENTS The study was supported by the National Natural Science Foundation of China (Grant No.70973136). We are grateful to all the investigators in the 15 hospitals of the survey. The collaboration of all the participants in the study was also valuable and cherished.
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