JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 5, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0555
The Impact of Loneliness on the Relationship between Depression and Pain of Hong Kong Chinese Terminally Ill Patients Wallace Chi Ho Chan, PhD, RSW, FT,1 Chi Wai Kwan, PhD,2 Iris Chi, DSW,3,5 and Alice Ming Lin Chong, PhD 4
Background: Depression and pain often coexist in terminally ill patients, but few studies have examined their relationship among larger samples. Other psychosocial factors experienced by patients may become barriers to pain management and affect the relationship between depression and pain. Objective: This study aims to examine the relationship between depression and pain in terminally ill Chinese elders in Hong Kong and explore the moderating effect of psychosocial factors such as loneliness, communication, and being at ease interacting with others. Methods: A secondary data analysis was conducted on a large cohort of community-dwelling Chinese elders applying for long-term care service in Hong Kong between 2004 and 2009. A total of 312 elders who had a prognosis of less than 6 months were included. Results: Depression was associated positively and significantly with pain. However, loneliness moderated this relationship, and for participants who felt lonely, depression and pain were no longer significantly associated. Conclusions: Findings support the positive relationship between depression and pain in terminally ill elders. Feeling lonely may affect the tendency to report pain. To ensure optimal pain management for patients in palliative and end-of-life care, assessment and intervention should focus on the impact of psychosocial factors such as loneliness, and how they may affect elders’ reporting of pain.
ain is a major physical symptom of distress for terminally ill patients. According to a previous review, the prevalence rate of pain among patients with advanced cancer was 64% worldwide.1 In Hong Kong, Chan2 reported that 65.2% of palliative care patients experienced pain of various intensities upon using the palliative care service, and 52% experienced pain at the last assessment before death. Similarly, Kwok et al.3 indicated that 57% of palliative care patients in Hong Kong experienced pain of all grades in the last week of life. Pain management remains a great concern for terminally ill patients, and this may depend on the adequacy of pain assessment. Zaza and Baine4 commented that one barrier to pain management is lack of relevant psychosocial factors in
pain assessment when pain is multidimensional. This echoes Saunders’s concept of total pain as multidimensional, including physical and psychosocial components.5 Previous studies show that physical pain is closely related to psychosocial variables, such as distress (e.g., depression and anxiety) and social support among patients with cancer.4,6 The literature also states that certain physical and psychosocial symptoms may often be related and coexist as a ‘‘symptom cluster.’’7 Depression is often found to coexist with pain in patients with cancer.6,8,9 However, a systematic review of previous studies of pain and depression among patients with cancer show there is not sufficient evidence to support the causal relationship between pain and depression.10 In the Hong Kong Chinese context, little has been explored between depression and pain among terminally ill patients. One study found that depressed patients with cancer
Department of Social Work, The Chinese University of Hong Kong, Shatin, Hong Kong. Department of Statistics and Actuarial Science, 5Sau Po Centre on Aging, The University of Hong Kong, Hong Kong. 3 School of Social Work, University of Southern California, Los Angeles, California. 4 Department of Applied Social Studies, City University of Hong Kong, Hong Kong. Accepted November 12, 2013. 2
in palliative care do not report a significantly higher level of pain than non-depressed patients do.11 To further investigate the relationship between pain and psychological factors, Linton and Shaw12 proposed psychological models of pain that aim to explain how psychological factors may influence the experience of pain. They suggested that people who experience emotional distress may cope poorly with pain. Other psychological factors (e.g., fear, acceptance, commitment) may affect how depressed people perceive and experience pain. The relationship between depression and pain may be better understood if we can examine the impact of other psychosocial factors that may coexist with depression. These factors may become patient-related barriers to pain management13–15 and moderate the relationship between depression and pain. Patient-related barriers to pain management, a concept developed from the Barriers Questionnaire (BQ),14 focus on areas like fear of addiction and tolerance to analgesics, and belief that pain is an indication of disease progression.14,16 Using the BQ, palliative care patients in Hong Kong were compared with patients in Taiwan and the United States. The former showed greater concern about the abovementioned patient-related barriers.17 Discussion has also been on how misconceptions about pain may interfere with the management of cancer pain among Hong Kong Chinese palliative care patients.18 Yet, how psychosocial issues may become barriers to pain management are still underexplored, such as the emotional changes of patients that may hinder pain management.16 Pain is a subjective perception, and assessment is largely based on self-reporting.19 Psychosocial factors may play a key role in the assessment of pain if they influence patients’ tendency to report it. For example, loneliness is common among patients in palliative care,20 and self-alienation is one dimension of loneliness that may be related to the tendency to report pain.21 Communication barriers may also increase the difficulty of assessing the pain of older adults.22,23 In addition, patients who experience difficulty interacting with family members at the end of life may be less willing to report pain and seek help from them.24 These psychosocial factors may act as barriers to pain management and affect the relationship between depression and pain. Therefore, this study aims to investigate two issues: the relationship between depression and pain among terminally ill Chinese elders in Hong Kong, and what psychosocial factors may moderate the relationship between them. Methods Sample
This is a secondary analysis of data collected from a large cohort of community-dwelling Chinese elders applying for long-term care services in Hong Kong between 2004 and 2009. When an older adult applies for these services, a trained and accredited assessor, usually a social worker or a nurse, assesses her/him using the Minimum Data Set for Home Care (MDS–HC) to ascertain needs and match the applicant with appropriate service(s). An assessor visits the applicant and key caregivers at home, reviews available written health information, communicates with the elder and caregivers, and observes the living environment. A detailed account of the assessment procedure has been
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reported elsewhere.25 This sample represented the majority of frail elders living in Hong Kong. Applicants did not sign a consent form for this research study. However, agencies that signed the contract to use MDS agreed to share their data with the researchers, after carefully deleting all personal information. A total of 115,029 elders completed the MDS–HC between 2004 and 2009. The analysis consisted of all 312 participants who met the inclusion criteria: (1) community-dwelling Chinese age 60 or above; (2) prognosis of less than 6 months to live (based on the available information from the written medical records, applicants, and caregivers), and (3) having their need for long-term care assessed for the first time. Aggregate data of all 6 years are used in all the data analysis for the sake of clarity and because no significant differences among the six years were found in the demographic characteristics and the measures of interest of the participants. Measures
In this study, all measures were adopted from the Chinese version of MDS–HC, a Resident Assessment Instrument (RAI) assessment tool specially developed for the home-care setting, to provide a comprehensive assessment of long-term care needs of older community-dwellers.26 This instrument has been validated in previous studies.27 Covariates
We controlled the key demographic variables and cognitive impairment in this study. Demographic variables are gender, age, marital status, and education level. Marital status was grouped under ‘‘married’’ and ‘‘not married.’’ Because the average education level is very low, education was categorized as ‘‘no education’’ or ‘‘some education.’’ Cognitive impairment was measured with the 5-item Cognitive Performance Scale, a hierarchical scale that assesses short-term memory, cognitive skills for daily decision-making, ability to make oneself understood, comatose status, and dependence in eating.28 Scores ranged from 0 (cognitively intact) to 6 (very severe impairment). Cronbach a was 0.73. Risk factor
Depression was operationalized by the number of negative mood symptoms experienced by participants. It was based on the occurrence of the following nine items, each dichotomous (experienced that negative symptom or not): (1) feelings of sadness or being depressed; (2) persistent anger with self or others; (3) expressions of what appear to be unrealistic fears; (4) repetitive health complaints; (5) repetitive anxious complaints and concerns; (6) sad, pained, worried facial expressions; (7) recurrent crying and tearfulness; (8) withdrawal from activities of interest; and (9) reduced social interaction. Scores ranged from 0 to 9, indicating number of negative mood symptoms. A higher score represents a higher level of depression. Moderators
Three moderators—communication, loneliness, and being at ease interacting with others—were included. Scoring of communication was based on the summation of codes for two items: making self understood and ability to understand
DEPRESSION AND PAIN OF TERMINALLY ILL PATIENTS IN HONG KONG
others.29,30 There were five codes for each item. Code 0 referred to understood, code 1 to usually understood, code 2 to often understood, code 3 to sometimes understood, and code 4 to rarely/never understood. Like other items in MDS-HC, the sources of information assessing the items included the review of available documents and records; communication with and observation of the applicants; and communication with family members, caregivers, and health care and social work professionals who provided services to applicants. The total score ranged from 0 to 8. A score of 0 meant no communication problem, and 8 meant severe communication problem. Cronbach a was 0.78. To study the moderation effects, the communication scale was recoded into two groups: 0 as no communication problem, and greater than 0 as having problems in communication. Loneliness was a single item in MDS-HC. The term evaluated whether or not the participant said or indicated feeling lonely (0 = no; 1 = yes). At ease interacting with others was a single item. The term evaluated whether or not the participant said or indicated being at ease interacting with others (0 = at ease; 1 = not at ease). Dependent variable
The scoring of pain was evaluated by two items: pain frequency and pain intensity. Pain frequency was coded as 0 = no pain; 1 = less than daily; 2 = daily, one period; and 3 = daily, multiple periods. Pain intensity was coded as 0 = no pain, 1 = mild, 2 = moderate, 3 = severe, and 4 = times when pain is horrible or excruciating. The pain scale ranged from 0 to 4, 0 meaning no pain, and 4 meaning severe pain. Cronbach a was 0.89. Data analysis
The variables were summarized in mean, standard deviation (SD), frequency counts, and percentages when appropriate. To study the effects of negative mood on the severity of pain, the linear regression model was employed. The effects of the moderators were investigated by including the interaction effects terms in the model. For ease of interpretation, the moderators were categorized as two levels in the regression model. The cutoffs were obtained by the medians of the scales. The data analysis for this paper was generated using SAS/STAT software, Version 9.3 of the SAS System for Windows.31 Results
A total of 312 elders who had a prognosis of less than 6 months to live were included. The mean (SD) age was 77.43 (7.31). Over half (52.24%) were male and had received some education (53.85%); 46.47% were married. The majority suffered from cancer (64.1%). The mean (SD) for CPS was 1.38 (1.05). The mean (SD) for the pain scale was 1.52 (1.19). The number of negative mood symptoms was 1.38 (1.40), and the communication score was 0.76 (1.45). One hundred thirty-four (42.95%) elders felt lonely, and 34 (10.90%) were not at ease interacting with others. Summary statistics are shown in Table 1. The regression model was used to study the effects of negative mood on pain. Without considering the moderators,
Table 1. Summary Statistics of the Elders Number Percentage Male Married Received some education Age CPS (0–6) Pain (0–4) Negative mood (0–9) Communication (0–8) Communication problem (score of communication > 0) Feeling lonely Not interacting with others at ease
163 145 168
52.24 46.47 53.85 77.43 1.38 1.52 1.38 0.76
(7.31) (1.05) (1.19) (1.40) (1.45)
SD, standard deviation.
depression was found positively associated with the pain score among terminally ill Chinese elders in Hong Kong (b = 0.185, p < 0.001). When the moderators were considered, there was no significant moderation effect of communication and being at ease interacting with others. Loneliness indicated a strong effect on pain (b = 0.759, p < 0.001) when participants did not experience any negative mood symptoms, and significantly moderated the effects of negative mood on pain. The pain of the elders who did not feel lonely increased with negative mood (b = 0.287, p < 0.01). The relation between pain and negative mood of elders who felt lonely can be studied by the summation of coefficients between the main effect of negative mood on pain (b = 0.287, p < 0.001) and the interaction term of ‘‘feeling lonely · negative mood’’ (b = - 0.215, p < 0.005), resulting as 0.072, at a nonsignificant level ( p > 0.05). Details are shown in Table 2. The VIF values of different variables were checked, and multicollinearity was not a problem. Discussion
Findings show that depression, measured by the number of negative moods, was positively associated with pain among terminally ill Chinese elders in Hong Kong. The positive relationship is consistent with that in previous studies involving cancer patients.10 This finding shows that terminally ill elders who were more depressed experienced a higher level of pain. However, our findings are different from those of Sze et al.,11 who showed there was no significant difference in the level of pain between depressed and nondepressed patients with cancer in palliative care. There may be several reasons for this discrepancy. Our study included larger samples of terminally ill participants (312 vs. 70), who are living in the community. Also, our study explored the relationship between depression and pain among participants with and without pain who experienced different types of disease, whereas the previous study only included cancer patients who experienced pain. It is likely that patients who experienced pain and were admitted to palliative care may be more overwhelmed by the physical distress, and therefore the impact of depressed moods on pain may be less influential. Participants in this study were still living in the community,
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Table 2. Regression of Pain Scale on the Negative Mood Symptoms and its Moderators 95% CI for b b
0.287a 0.046 - 0.123 0.759a - 0.215b - 0.234 - 0.060 - 0.005 - 0.027 0.329b - 0.184 - 0.096
0.072 0.220 0.105 0.203 0.099 0.341 0.137 0.010 0.149 0.143 0.143 0.074
- 0.144 - 0.387 - 0.330 0.360 - 0.409 - 0.906 - 0.330 - 0.024 - 0.320 0.048 - 0.465 - 0.242
0.429 0.478 0.083 1.158 - 0.020 0.437 0.209 0.014 0.267 0.610 0.098 0.050
Variable Negative mood Communication problem Communication problem · negative mood Feeling lonely Feeling lonely · negative mood Not at ease interacting with others Not at ease · negative mood Age Male Married Some education CPS a
p < 0.001; bp < 0.05. CPS, Cognitive Performance Sscale; SE, standard error; CI, confidence interval. R2 = 0.150
and their pain may be more associated with emotional status, such as negative moods experienced in daily life. We also explored the effects of three moderators, ‘‘communication,’’ ‘‘loneliness,’’ and ‘‘being at ease interacting with others’’ on the relationship between depression and pain. Only loneliness was found to indicate a moderating effect on the relationship between depression and pain. This suggests that, originally, elders’ depression scores were associated positively and significantly with the pain scores; however, for elders who experienced loneliness, this relationship between depression and pain was no longer valid. If we consider that loneliness associated significantly with pain, our findings lead to a question: Why do depressed elders who do not feel lonely tend to experience a higher level of pain, but those who feel lonely do not? One reason is that some psychosocial factors may affect participants’ perception of pain. Pain is a subjective experience that depends on participants’ self-report. Therefore, it is possible that participants who did not feel lonely may be more willing to report pain (reflecting the significant and positive relationship between depression and pain). The literature also suggests that loneliness is a multidimensional concept that may include self-alienation.21,32 Participants who felt lonely may experience self-alienation, which can become a psychosocial barrier to reporting pain. These elders may show self-neglect and may lose the desire to take care of themselves and thus underreport pain.33 Our findings show that married participants were associated with a higher level of pain, which may be related to more accurate reporting of pain during the assessment. In conducting the assessment, the assessor usually communicates with elders and family caregivers. The spousal caregivers may help the participants to better report pain. In this study, the impact of a psychosocial factor, loneliness, on the tendency to report pain is considered the key reason for the moderating effect of loneliness on the relationship between depression and pain. Our explanation may receive further validity, as a similar explanation was found in a previous study of Chan.34 That study also suggested that terminally ill patients’ tendency to report physical symptoms may be limited by their psychosocial conditions, such as being unaware of the diagnosis and prognosis, which may
also reflect their difficulties in accepting the illness and death. As shown in the present study and in Chan’s,34 psychosocial factors related to alienation and loneliness seem to affect the tendency of terminally ill persons to report physical symptoms such as pain. In addition to discussing the traditional barriers to pain management (e.g., misunderstanding the use of analgesics), our findings provide an alternative perspective on examining the impact of psychosocial factors on pain (via the tendency of reporting pain) in end-of-life care. Implications for palliative and end-of-life care
This study indicates that depressed terminally ill elders in Hong Kong may experience a higher level of pain. Our findings suggest that it would be appropriate to pay attention to the coexistence of pain, loneliness, and depression. For example, when helping professionals identify pain as the presenting distress, other hidden distresses should be explored, such as depression and loneliness. Our study also highlights the importance of assessing the impact of psychosocial factors on pain among terminally ill elders. In Hong Kong, the psychosocial role in the pain management of palliative care patients was often underrecognized, and pain management was considered the responsibility of health care professionals such as physicians and nurses.34 Our findings suggest that it is crucial to assess the psychosocial conditions of elders, understanding whether or not the sense of loneliness or alienation may hinder the tendency to report pain. Therefore, helping professionals such as social workers, who focus on the psychosocial issues of patients, should be encouraged to be more sensitive in assessing the impact of psychosocial factors on terminally ill elders’ pain reporting. Social workers may also help other palliative care team members to better understand that patients’ psychosocial condition may become barriers to pain management. Appropriate psychosocial intervention, such as working with the sense of self-alienation, should be provided to ensure optimal pain management. Particular attention should be given to terminally ill elders who are disadvantaged and excluded in society.35 They may be more likely to experience loneliness as well as self-neglect, and underreport their pain.
DEPRESSION AND PAIN OF TERMINALLY ILL PATIENTS IN HONG KONG Limitations and future directions
The present study is only cross-sectional and therefore cannot show the causal relationship between depression and pain. Also, this study did not include comprehensive scales to measure depression and loneliness. Future studies that include a well-established measurement of depression and loneliness may further enhance the validity of our findings. Qualitative studies can be conducted in the future to enhance understanding of how the psychosocial issues of terminally ill patients may affect the reporting of pain and other physical symptoms. Different psychosocial factors may be closely related, and future studies may explore the mediating effects among these factors and pain. The present study was conducted in the Hong Kong Chinese context. Future comparison studies may be conducted to examine if cultural factors play a role in the impact of psychosocial factors on pain. Conclusions
This study shows that depressed terminally ill Chinese elders living in the community in Hong Kong were associated with a higher level of pain. Loneliness was found to show a moderating effect on the relationship between depression and pain. It is possible that terminally ill elders who were lonely have a lower tendency to report pain. Helping professionals should assess the impact of psychosocial factors, such as loneliness, on the pain of terminally ill older adults, and in turn, optimize pain management. Particular concerns should be given to more disadvantaged elders, who may be more likely to underreport pain as a result of loneliness and isolation. Acknowledgments
The authors would like to thank the members of the RAI research team in Hong Kong for their comments and suggestions at the early stage of manuscript development. Author Disclosure Statement
The authors declare no conflict of interest. References
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Address correspondence to: Iris Chi, DSW 669 West 34th Street Los Angeles, CA 90089-0411 E-mail: [email protected]