Author: Wu, K K
Date published: September 1, 2010
(ProQuest: ... denotes formulae omitted.)
Psychological Well-being of Caregivers in Palliative Care
Since the beginning of the modern hospice movement, the patient and family caregiver have been considered the unit of care because they have to face the physical and psychological adversities associated with advanced cancer. These adversities contribute to the vulnerability of both the patients and their caregivers, causing psychological distress, which in turn has a significant impact on their quality of life (QOL). Serving caregivers in palliative care is also justified as these individuals provide the major practical and psychological support for patients, such that their well-being will unavoidably have a significant impact on patients.1-4
The concept of psychological well-being encompasses the widely accepted concepts of QOL, caregiving stress, and burden. While QOL is usually defined by one's level of functioning and subsequent impact on various life aspects,5 caregiving stress and burden focus on the specific impact of caregiving.6 Like spiritual well-being, psychological well-being comprises all aspects of a person's experiences including relationships with one self and others. It includes one's need to find life meaning and a sense of connectedness with oneself and others. Perhaps, the difference between spiritual and psychological well-being is that the relationship with a transcendent dimension and superior powers emphasised in spiritual well-being is not included in the concept of psychological well-being.7,8 With respect to factors affecting the psychological well-being of caregivers, Gaugler et al9 noted that if caregiving stress was not well managed, it would spread and influence other aspects of the caregiver's life, as secondary stressors. Other researches pointed out that perceived social support, caregiver guilt and perceived caregiving competence can help predict the caregiver's burden and QOL.6,10,11 Various emotions could result from these stresses, which include resentment, overload, feeling trapped, loss, hopelessness, anxiety, depression, emptiness, fear, helplessness, loss of control, uncertainty and guilt.12-14 Moreover, the psychosocial and somatic adjustment of cancer caregivers might also be compromised.10,15 Some researches even showed that spouses and caregivers could actually experience more psychosocial problems than the patients themselves.16-18
However, as caregivers usually put patients' needs first, they might not be willing or find it easy to express their own needs, especially those which differ from the patients'. Many caregivers have no contact with professionals or access to support or services for themselves.19,20 Previous findings suggested that health care professionals might not recognise caregivers' emotional needs, and thus, caregivers of patients receiving palliative care might be left almost entirely alone in terms of services.19,21 Ahmed et al22 also described services for caregivers as crisis intervention, meaning that services only respond to situations where caregivers were at risk of apparent breakdown. According to the National Institute of Clinical Excellence (NICE), the well-being of both the patients and their caregivers were closely related, and that the caregivers of patients with advanced cancer were vulnerable to psychological distress. Thus, explicit and separate assessment of caregivers' needs was of crucial importance in the provision of comprehensive palliative care to enhance the QOL for both parties.23 Recommendations from NICE are consistent with recent research findings, which suggest that given the health consequences of caregiving, caregivers of patients with advanced cancer benefit from prospectively defining their needs.24 Specifically, caregivers have to cope with medical, practical, psychosocial, and spiritual uncertainty in preparing for death and bereavement. Communication to address their uncertainty was found to be a useful strategy in assisting them to process information and complete important tasks for management of such uncertainty.25
The Need for a Screening Tool
To assess the psychological well-being and needs of caregivers, a tool for screening of psychological distress and potential psychopathology associated with caregiving is required for the linking of support to enhance QOL. While well-established self-reporting tools to measure common psychopathology such as anxiety and depression could serve the purpose of screening for specific psychopathological features, other instruments are also needed. These should be able to measure psychological well-being capturing conceptualisation of meaning and purpose, satisfaction from life and support, and possible emotional distress / strength in facing the uncertainties related to anticipated loss. Additional measurements should be directed at selfefficacy in caregiving for caregivers to study the distress specifically related to the caregiving burden, and having to face death and loss.
For the assessment of psychological well-being / distress and QOL of caregivers in palliative care, the concept of QOL has to be defined. After reviewing the evolution of the concept, Bruley26 suggested 4 main conceptualisations of QOL, namely: (1) social utility - one's usefulness to society; (2) happiness / affect - one's emotional state; (3) life satisfaction - a more stable evaluation between expectations and experience; and (4) normal life - functional status which may include physical, psychological, social and / or spiritual factors. In a review of 6 QOL instruments in which the number of palliative care items varied from 16 to 66, Bruley26 concluded that one should consider the conceptualisation and the form of a QOL instrument when choosing the one that best fits the purpose. Also, the length and format of the instrument have to be considered to suit the needs of palliative care service. Consistent with Bruley's findings,26 the spiritual aspect of well-being (directed at meaning and purpose) has recently been recognised by doctors and mental health professionals as a central component of psychological well-being.27
In Hong Kong, there were no validated tools for evaluating psychological well-being which encompassed the conceptualisations of spirituality for caregivers of advanced cancer patients that could identify distress and service linkages. The current study aimed to develop and examine the psychometric properties of a Psychological Wellbeing Scale for Caregivers (PWS-C) of patients receiving palliative care.28 Data collected from 132 family caregivers were used to study the internal consistency, the reliability, and the factor structure of the scale. The concurrent validity of the scale was examined by studying its correlations with well-established self-reported measures of depression and anxiety. To examine the potential utility of the scale as an outcome measure, a pilot study was conducted to compare 15 caregivers who had received psychological intervention and completed the PWS-C before and after treatment.
Family caregivers (n = 132) participating in the study were a convenience sample recruited from the Palliative Care Unit (PCU) of the Caritas Medical Centre, Hong Kong, during the period between October 2006 and March 2009. Participants were required to complete the PWS-C. Among them, 70 were able to read and consented to complete the Hospital Anxiety and Depression Scale (HADS).29,30 All of the questions were written in Chinese.
Among the participants who had identified their gender and age in the survey, there were 34 (26%) men and 75 (57%) women, and their ages ranged from 14 to 87 (mean, 50; standard deviation [SD], 14) years. No significant differences were noted with respect to age and gender between participants, regardless of whether they had or had not completed the HADS.
Psychological Well-being Scale for Caregivers
To screen for psychological distress, an 11-item PWS-C was developed for family caregivers of advanced cancer patients in the PCU. Based on the literature, 4 areas of psychological well-being of particular relevance to caregiving and anticipated loss related to terminal illness were targeted. These were: (1) 2 items on Social Support; (2) 3 items on Life Meaning; (3) 2 items on Emotional Distress; and (4) 2 items on Caregiving Inadequacy. Two items on Hospital Care were included to differentiate satisfaction with staff and environmental support in the PCU from psychological well-being. In practical terms, this also helped to increase communication channels between caregivers and staff as a means of improving the logistic and environmental aspects of PCU services. Each item consisted of a self-reference statement indicating a particular view or psychological state on the focused issue. Respondents were asked to indicate how much they agreed with each statement on a scale ranging from 0 (totally disagree) to 10 (totally agree). The scale could be administered verbally by researchers or filled in by the participants themselves. The items and their respective subscales are shown in Table 1.
Hospital Anxiety and Depression Scale
The HADS is a self-reported instrument filled in by participants themselves in a general medical outpatient setting, and is designed to detect symptoms related to anxiety and depression during the past week. All items were rated on a 4-point scale, ranging from the absence of a symptom (score, 0) to maximum symptomatology (score, 3).29 Leung et al30 found that the Chinese version of the HADS had good internal consistency and scale equivalence compared to the original English version. A score of 11 was used as the cut-off for all HADS subscales. Alphas for the depression and anxiety subscales for the present sample were 0.84 and 0.87, respectively.
Psychometric Properties of the Psychological Wellbeing Scale for Caregivers
The PWS-C item-level descriptive statistics are shown in Table 1. The internal consistency of the PWS-C subscale and total scores examined using Cronbach's alpha coefficients found that the reliability of the subscales were acceptable. The results of these analyses produced the following coefficients: Social Support (α = 0.69), Life Meaning (α = 0.68), Emotional Distress (α = 0.68), Caregiving Inadequacy (α = 0.63), and Hospital Care (α = 0.86).
The corrected item-total correlations produced the following ranges of coefficients: Social Support (r = 0.53), Life Meaning (rs = 0.43-0.54), Emotional Distress (r = 0.51), Caregiving Inadequacy (r = 0.47), and Hospital Care (r = 0.76).
Among the participants, 12 (11%) agreed to retake the PWS-C after a 1-week interval. Their data were used to examine the test-retest reliability of the PWS-C, and yielded the following correlation coefficients: Social Support (r = 0.65), Life Meaning (r = 0.63), Emotional Distress (r = 0.89), Caregiving Inadequacy (r = 0.81), and Hospital Care (r = 0.47). This suggested that after a 1-week interval, the subscales for examining psychological well-being were more stable than that on satisfaction towards hospital service.
An exploratory factor analysis was conducted to evaluate the factor structure of the PWS-C. Barlett's Test of Sphericity was significant (p < 0.001), indicating significant correlations among the variables. Four factors were extracted, explaining 71% of the variance. Loadings of variables on factors and percentages of variance are shown in Table 1.
The 4 factors had moderate-to-strong loadings on the items. The first factor was formed by the 5 items belonging to the subscales of Social Support and Life Meaning. The second factor was formed by 2 items belonging to the Caregiving Inadequacy subscale and 1 item belonging to the Emotional Distress subscale. However, this particular Emotional Distress item had a loading of 0.63 on this factor and a loading of 0.55 on the fourth factor, which included the remaining item of the Emotional Distress subscale. The third factor was formed by the 2 items belonging to the Hospital Care subscale.
Results of the factor analysis supported that factors underlying psychological well-being for caregivers in the PCU being interdependent but could be differentiated. While the subscales of Social Support and Life Meaning were highly related and loaded to become a single factor statistically, Emotional Distress was associated with Caregiving Inadequacy. This was because 1 of the 2 Emotional Distress items was shown to have similar loadings on both factors. The present result suggests that the subscale of Hospital Care referred to issues independent of the other subscales on psychological well-being. This was consistent with the correlations between different subscales of the PWS-C as presented in Table 2. The low-to-moderate correlation among the subscales suggests that they were related but independent from one another, each of them representing a different aspect of psychological well-being.
Relationship between the Psychological Well-being Scale for Caregivers and the Hospital Anxiety and Depression Scale
To examine the concurrent validity of PWS-C as a measure of psychological well-being, Pearson correlations between the PWS-C and HADS subscale scores were studied. As presented in Table 2, the correlation coefficients indicate that the relationships were low to moderate, showing that the PWS-C subscales contributed information that was not captured by HADS.
Utility of the Psychological Well-being Scale for Caregivers as an Outcome Measure
To examine the potential utility of the PWS-C as a measure for documenting changes of psychological well-being overtime or as an outcome of the intervention provided, a pilot study was conducted. The pre-treatment and posttreatment PWS-C subscale scores of a convenience sample of 15 caregivers (1 man and 14 women; aged 31 to 70 years, with a mean [SD] of 53  years), who had received psychological intervention, were compared using repeated measures analysis of variance (ANOVA). The psychological intervention was offered by clinical psychologists of the PCU. The treatment was tailor-made according to the needs of individual caregivers instead of following a standardised protocol. The major treatment approaches used included narrative therapy to help patients and their caregivers identify the meaning of their life experience and enhance mutual support,31 as well as cognitive behavioural therapy for identifiable features related to anxiety and depression.32,33 The number of sessions ranged from 1 to 13 (mean [SD] = 6 ). As shown in the Figure, after treatment there was an increase of scores for Social Support and Life Meaning, and a decrease of scores for Emotional Distress and Caregiving Inadequacy. Thus, improvement in psychological wellbeing was suggested by the direction of change in scores after treatment for all of the 4 PWS-C subscales aimed at examining psychological well-being. Results of repeated measures ANOVA indicated that the difference in pre-post treatment comparison was significant, with a reasonable effect size for the Social Support subscale (F[1,14] = 8.24, p < 0.05, partial η2 = 0.37), and the Life Meaning subscale (F[1,14] = 7.41, p < 0.05, partial .2 = 0.35). The possibility of using the PWS-C as a measure for documenting specific changes of psychological well-being was also supported, because the subscale score for Hospital Care (included in the scale to differentiate satisfaction with staff and environmental support from psychological well-being) did not change after treatment.
The PWS-C subscales were found to be reliable with acceptable internal consistency. Also, those on psychological well-being were more stable than the subscales on one's satisfaction towards hospital service, in terms of test-retest reliability after a 1-week interval. The identified 4-factor structure suggested that there are 4 related but independent factors measured by the PWS-C. These included factors represented by well-being related to social support and life meaning, caregiving inadequacy, emotional distress, and satisfaction towards hospital service.
The unique and specific contribution of each PWS-C subscale, as a measure of specific aspects of psychological well-being for caregivers of patients receiving palliative service, was confirmed by the differing strengths of relationship found between various PWS-C and HADS subscales. The subscales of Life Meaning and Emotional Distress were moderately related to features of anxiety and depression measured by the HADS. On the other hand, the correlations between the subscales of Social Support and Caregiving Inadequacy with HADS subscales were low. This showed that comparing with other PWS-C subscales, the constructs of life meaning and emotional distress were more closely related to symptoms of anxiety and depression.
Given the short length and easy administration of the PWS-C, the psychometric properties of the PWS-C found in the present study support its use for screening of psychological well-being for caregivers of patients in the PCU. Such screening can be conducted as part of a routine intake procedure in the PCU, so that the psychological wellbeing of caregivers would be involved in palliative care at an early stage. The changes in PWS-C subscale scores of family caregivers after receiving psychological intervention in the pilot study suggest the potential utility of the scale as an outcome measure, but warrants further examination.
In this study, Caregiving Inadequacy defined by family caregivers' subjective sense of support and understanding towards the patient needs was closely related to the mental health of family caregivers. This may contribute to the discussion on the use of advanced directives for enhancing patient autonomy, relieving decision-making burdens, and strengthening the relationships between patients and their family caregivers.34 In the future, it would be meaningful to utilise the PWS-C and other mental health measures to evaluate the effect of advanced directives for family caregivers.
Some of the limitations related to difficulties encountered in the setting and the nature of the participants. Since the study was carried out in a palliative care setting where issues of caregiving and the patient's condition are the major concern of family caregivers, we had to rely on convenience sampling and hence a curtailed sample size. Not all participants were literate, even though they consented to participate in the study and completed the PWS-C, which could be administered verbally. However, a number of them were not able to fill in the HADS, which is a self-administered self-reported measure. This led to a discrepancy between the number of participants who completed the PWS-C and the HADS. In order to construct a screening tool that could be applied in a palliative care setting, both the length of the scale and the acceptance of caregivers had to be considered. Inevitably this led to a trade-off for scale comprehensiveness, which in turn might have led to the mediocre Cronbach's alpha found for the PWS-C subscales. To enhance acceptance of caregivers to participate in the present study and to serve the purpose of early identification of possible psychopathology for service provision, HADS was used as the second measure in the present study. However, to validate the construct of PWS-C, it would be more appropriate to include measures on more closely related concepts, such as QOL, caregiving stress, and burdens.
Although respondents in the present study were caregivers of patients in the PCU, they were not the pretherapy clinical sample, which may be needed for the demonstration of an independent factor structure. Thus, it is possible that the variance of the measures and independence of the 5 subscales are blurred, because most of the respondents in the present study were not experiencing psychological distress to a clinical extent. The factor structure needs to be further studied with an independent clinical sample and be examined by confirmatory factor analysis.
The present study was also limited by the number of participants for examination of the validity of the PWS-C. Its sensitivity and specificity for the screening of psychological distress affecting QOL and mental health have to be tested in future studies with larger samples utilising structured clinical interviews. Moreover, the study on using the PWS-C as an outcome measure was only a pilot study. The present findings with a skewed non-clinical study sample shows that the scale is fit for use as a screening tool. In view of the small sample size and non-standardised treatment offered, further controlled trials with the use of standardised treatment have to be considered in the future. With a larger sample of participants who could complete both the PWS-C and the HADS or other related measures, the use of cut-off values might also be explored.
This study was supported by the Palliative Care Unit of the Medicine and Geriatrics Department and the Clinical Psychology Department of the Caritas Medical Centre in Hong Kong. We would like to thank all the patients and family caregivers for their generous participation in the study. Also, thanks are due to the support and contribution of all the staff involved.
All authors of this paper do not have any actual or potential commercial associations or conflicts of interest, in connection with the submitted manuscript. Moreover competing financial interests of all authors (if any) have been appropriately disclosed according to the policy of the Journal.
1. Clemmer SJ, Ward-Griffin C, Forbes D. Family members providing home-based palliative care to older adults: the enactment of multiple roles. Can J Aging 2008;27:267-83.
2. Vivar CG, Canga N, Canga AD, Arantzamendi M. The psychosocial impact of recurrence on cancer survivors and family members: a narrative review. J Adv Nurs 2009;65:724-36.
3. Kaasa S, Loge JH. Quality of life in palliative care: principles and practice. Palliat Med 2003;17:11-20.
4. Tamburini M, Brunelli C, Rosso S, Ventafridda V. Prognostic value of quality of life scores in terminal cancer patients. J Pain Symptom Manage 1996;11:32-41.
5. Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychol Med 1998;28:551-8.
6. Chiou CJ, Chang HY, Chen IP, Wang HH. Social support and caregiving circumstances as predictors of caregiver burden in Taiwan. Arch Gerontol Geriatr 2009;48:419-24.
7. Hermann C. Development and testing of the spiritual needs inventory for patients near the end of life. Oncol Nurs Forum 2006;33:737-44.
8. López AJ, McCaffrey R, Quinn Griffin MT, Fitzpatrick JJ. Spiritual well-being and practices among women with gynecologic cancer. Oncol Nurs Forum 2009;36:300-5.
9. Gaugler JE, Linder J, Given CW, Kataria R, Tucker G, Regine WF. The proliferation of primary cancer caregiving stress to secondary stress. Cancer Nurs 2008;31:116-23.
10. Spillers RL, Wellisch DK, Kim Y, Matthews BA, Baker F. Family caregivers and guilt in the context of cancer care. Psychosomatics 2008;49:511-9.
11. Tang ST, Li CY, Chen CC. Trajectory and determinants of the quality of life of family caregivers of terminally ill cancer patients in Taiwan. Qual Life Res 2008;17:387-95.
12. Donnelly M, Anderson LA, Johnston BT, Watson RG, Murphy SJ, Comber H, et al. Oesophageal cancer: caregiver mental health and strain. Psychooncology 2008;17:1196-201.
13. Yates P. Family coping: issues and challenges for cancer nursing. Cancer Nurs 1999;22:63-71.
14. Doornbos MM. The strengths of families coping with serious mental illness. Arch Psychiatr Nurs 1996;10:214-20.
15. Ratnakar S, Banupriya C, Doureradjou P, Vivekanandam S, Srivastava MK, Koner BC. Evaluation of anxiety, depression and urinary protein excretion among the family caregivers of advanced cancer patients. Biol Psychol 2008;79:234-8.
16. Baider L, Perez T, De-Nour AK. Gender and adjustment to chronic disease. A study of couples with colon cancer. Gen Hosp Psychiatry 1989;11:1-8.
17. Wingate AL, Lackey NR. A description of the needs of noninstitutionalized cancer patients and their primary care givers. Cancer Nurs 1989;12:216-25.
18. Higginson I, Wade A, McCarthy M. Palliative care: views of patients and their families. BMJ 1990;301:277-81.
19. Grbich C, Parker D, Maddocks I. The emotions and coping strategies of caregivers of family members with a terminal cancer. J Palliat Care 2001;17:30-6.
20. Kristjanson L. Families of palliative care patients: a model for care. Victoria: Ausmed Publications; 1999.
21. Merckaert I, Libert Y, Delvaux N, Marchal S, Boniver J, Etienne AM, et al. Factors influencing physicians' detection of cancer patients' and relatives' distress: can a communication skills training program improve physicians' detection? Psychooncology 2008;17:260-9.
22. Ahmed N, Bestall JC, Ahmedzai SH, Payne SA, Clark D, Noble B. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliat Med 2004;18:525-42.
23. National Institute for Health and Clinical Excellence. Guidance on cancer services: improving supportive and palliative care for adults with cancer. London: National Institute for Health and Clinical Excellence; 2004.
24. Currow DC, Ward A, Clark K, Burns CM, Abernethy AP. Caregivers for people with end-stage lung disease: characteristics and unmet needs in the whole population. Int J Chron Obstruct Pulmon Dis 2008;3:753- 62.
25. Herbert RS, Schulz R, Copeland VC, Arnold RM. Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients. J Pain Symptom Manage 2009;37:3-12.
26. Bruley DK. Beyond reliability and validity: analysis of selected quality-of-life instruments for use in palliative care. J Palliat Med 1999;2:299-309.
27. McClain CS, Rosenfeld B, Breitbart W. Effect of spiritual wellbeing on end-of-life despair in terminally-ill cancer patients. Lancet 2003;361:1603-7.
28. Wu KK, Cho VW, Li A, Chen WT, Tse DM. The psychological wellbeing scale for family caregivers in palliative care. J Palliat Med 2009;12:985.
29. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67:361-70.
30. Leung CM, Ho S, Kan CS, Hung CH, Chen CN. Evaluation of the Chinese version of the Hospital Anxiety and Depression Scale. A cross-cultural perspective. Int J Psychosom 1993;40:29-34.
31. White M. Maps of narrative practice. New York: W. W. Norton & Company; 2007.
32. Beck JG, Grant DM, Read JP, Clapp JD, Coffey SF, Miller LM, et al. The impact of event scale-revised: psychometric properties in a sample of motor vehicle accident survivors. J Anxiety Disord 2008;22:187-98.
33. Beck A, Emery G, Greenberg R. Anxiety disorders and phobias: a cognitive perspective. New York: Basic Books; 2005.
34. Food and Health Bureau. Introduction of the concept of advance directives in Hong Kong: consultation paper. HKSAR Government; 2009.
Dr Kitty K. Wu, PhD, MSocSc (Clin. Psy.), FHKPS, MAPS, Clinical Psychology Department, Caritas Medical Centre, Shamshuipo, Hong Kong SAR, China.
Ms Valda W Cho, MSSc (Clin. Psy.), BSSc, Clinical Psychology Department, Caritas Medical Centre, Shamshuipo, Hong Kong SAR, China.
Ms Anna Li, BH (Nursing), Palliative Care Unit, Caritas Medical Centre, Shamshuipo, Hong Kong SAR, China.
W. T. Chen, MBBS (HK), MRCP (UK), FHKAM (Medicine), FHKCP, Palliative Care Unit, Caritas Medical Centre, Shamshuipo, Hong Kong SAR, China.
Dr Doris M. Tse, MBBS (HK), MRCP (UK), FHKAM (Medicine), FHKCP, FRCP (Lond), FRCP (Edin), Palliative Care Unit, Caritas Medical Centre, Shamshuipo, Hong Kong SAR, China.
Address for correspondence: Dr Kitty K. Wu, Clinical Psychology Services,
Kwai Chung Hospital, New Territories. Hong Kong SAR, China.
Tel: (852) 2959 8022; Fax: (852) 2959 8717; Email: email@example.com
Submitted: 1 March 2010; Accepted: 27 April 2010