The Relationship between Cancer Caregiver Burden and Psychological Outcomes: The Moderating Role of Social Connectedness

The present study: (a) examined the extent of caregiver burden and psychological wellbeing and (b) tested whether social connectedness moderated the association between caregiver burden and psychological symptoms in caregivers of people with cancer. The cross-sectional survey study included 189 cancer caregivers (mean age = 36.19 years, standard deviation = 11.78; 80.4% female). Data were collected on caregiver burden, social connectedness, and depression and anxiety. Moderation analysis was conducted to examine the effect of social connectedness on the relationship between caregiver burden and depression and anxiety. Caregiver burden was positively associated with depression and anxiety symptoms. Controlling for significant demographic and caregiver characteristics, the moderation model showed as perceived social connectedness increased, the relationship between caregiver burden and depression decreased (β = −0.007, se = 0.004, 95% CI: −0.014, 0.000, p = 0.05). By contrast, social connectedness did not moderate the association between caregiver burden and anxiety. Findings have implications for the management of depression in cancer caregivers. Social connectedness appears to provide a protective buffer from the negative impacts of caregiving, providing increased psychological resources to manage the burden associated with caregiving, resulting in lower depression. Research on strategies to improve caregiver wellbeing through enhancing engagement with social networks in ways that improve perceived sense of connectedness with others is warranted.     

The role of attachment dimensions and perceived social support in predicting adjustment to cancer

Objective: Several studies carried out over the last years show that patients' adjustment is very important to the past experiences of people with cancer. In our study of 96 subjects with cancer, we examined whether patient's working model of attachment anxiety/avoidance and perceptions of social support predicts adjustment to cancer. Methods: All participants filled in a demographic questionnaire, the Relationship Scale Questionnaire (RSQ), the Multidimensional Scale of Perceived Social Support (MSPSS), and the Mental Adjustment to Cancer (MAC). Results: Anxious attachment predicted psychological adjustment: patients with high levels of anxious attachment showed high levels of helplessness/hopelessness and anxious preoccupation (p<0.01, and p<0.05, respectively). With regard to the function of perceived social support, the patient's perception of social support from friends was predictive of both fighting spirit and stoic acceptance (p=0.01, and p<0.001, respectively). Conversely, the patient's perception of support from family members was not predictive of adjustment to cancer. Patients in the advanced stages of the illness showed higher levels of helplessness/hopelessness (p<0.05). Conclusions: Anxious attachment and perceived social support predicted different domains of psychological adjustment to cancer. Perceived support from friends may predict the patient's tendency to consider cancer as a challenge and to take an active role in therapy and recovery, whereas social support from family was not predictive of various states of adjustment to cancer. Copyright © 2009 John Wiley & Sons, Ltd.     

Women with advanced breast cancer and their spouses: diversity of support and psychological distress

Objective: The current study examines the effect of perceived support from different agents (spouse, family, friends, religion—spirituality) on psychological distress experienced by women with advanced breast cancer and their male spouses. Methods: In all, 150 couples consisting of women with advanced breast cancer and their spouses completed the Cancer Perceived Agent of Support Questionnaire and the Brief Symptom Inventory Scale. Results: Spouses reported more psychological distress (global, depression and anxiety) than patients. Both patients and spouses report a similar level of spousal support, and spouses reported a lower level of support provided from family and friends. Perceived support in the current study contributed significantly to the explanations of global psychological distress, depression and anxiety both for patients and their spouses. However, the specific agents of support that were significant in explaining these outcomes varied between patients and their spouses. For patients, family support received by both patient and partner was the most important source of support, protecting from psychological distress, while for the male partners, support from friends was most important. Religious‐based support was found to contribute negatively to the psychological distress of the patient and spouse. Conclusions: This study emphasizes the role of breast cancer spouses as care receivers in parallel to their role as caregivers, which is especially important in light of the high psychological distress reported by the spouses. The findings support the buffering effect, which different agents of support have against psychological distress while facing cancer for both patients and spouses. Patients and spouses differ with regard to the agents of support possessing this buffering effect. Copyright © 2009 John Wiley & Sons, Ltd.     

When peer support may be most beneficial: the relationship between upward comparison and perceived threat

Objective: Currently, the mechanism by which dyadic peer support programs may facilitate positive psychological adjustment for cancer patients is unclear. This study utilized social comparison theory to examine the effects of peer support on the psychological adjustment of women with breast cancer. Methods: A cross‐sectional survey of 251 recently diagnosed breast cancer patients (52% response), who had received a dyadic peer support intervention, was undertaken assessing anxiety, depression, perceived threat, and upward comparison. Results: Perceived cancer threat significantly moderated the relationship between positive upward comparison and depression levels (p = 0.017). Women who engaged in upward comparisons and who perceived their diagnosis to be more threatening had lower depression levels than women who were less threatened. Conclusions: Peer support services that provide support from cancer survivors may be especially beneficial for people who appraise their cancer diagnosis as more threatening. The application of theoretical models to future evaluation designs will further increase understanding of the psychological mechanisms involved in the effects of peer support and inform program development. Copyright © 2010 John Wiley & Sons, Ltd.     

Depression,anxiety, post‐traumatic stress disorder and health‐related quality of life and its association with social support in ambulatory prostate cancer patients

MEHNERT A., LEHMANN C., GRAEFEN M., HULAND H. & KOCH U. (2010) European Journal of Cancer Care 19 , 736–745
Depression, anxiety, post‐traumatic stress disorder and health‐related quality of life and its association with social support in ambulatory prostate cancer patients The aim of this study is to identify anxiety, depression and post‐traumatic stress disorder in prostate cancer patients and to investigate the association with social support and health‐related quality of life. A total of 511 men who had undergone prostatectomy were surveyed during ambulatory follow‐up care for an average of 27 months after surgery using standardised self‐report measures (e.g. Hospital Anxiety and Depression Scale, Posttraumatic Stress Disorder Checklist – Civilian Version, Illness‐Specific Social Support Scale, Short‐Form Health Survey). Seventy‐six per cent of patients evaluated their disease as ‘not’ or a ‘little threatening’. The cancer diagnosis and uncertainty were most frequently reported as ‘distressing’, while medical treatment and doctor–patient interaction were most frequently evaluated as ‘most helpful’. The number of patients reporting increased levels of psychological distress was 16%, with 6% demonstrating signs of having severe mental health problems'. No higher levels of anxiety and depression were observed in cancer patients compared with age‐adjusted normative comparison groups. Lack of positive support, detrimental interactions and perceived threat of cancer were found to be predictors of psychological co‐morbidity (P < 0.001). Lack of positive support, detrimental interactions, threat of cancer, disease stage and age significantly predicted mental health (P < 0.001), whereas the impact of social support on physical health was rather weak. Findings emphasise the need for routine psychosocial screening.     

Attachment orientations and psychological adjustment of parents of children with cancer: A matched-group comparison

Objective: To investigate the impact of childhood cancer on parents' adult attachment, social support, marital adjustment, anxiety, and depression. Methods: 30 parents of children with childhood cancer and 30 matched controls completed the following questionnaires: Experiences in Close Relationships-Revised, Dyadic Adjustment Scale-4, Multidimensional Scale of Perceived Social Support, State-Trait Anxiety Inventory – form Y, and Beck Depression Inventory. Results: Parents of children with childhood cancer had a significantly lower dyadic adjustment than controls, and higher levels of insecure-avoidant attachment, state anxiety, and depression. Conclusion: It is important for health-care personnel to take into account these parents' propensity to show increased levels of avoidant attachment during children's treatment to foster effective communication and supportive relationships between clinicians, pediatric patients, and parents.     

Anxiety,depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient's death

We examined psychological parameters in family caregivers of palliative cancer patients before and after the death of the patients. Caregivers’ data about depression and anxiety (Hospital Anxiety and Depression Scale), quality‐of‐life (Short Form‐8 Health Survey), and social support (Oslo Social Support Scale) were collected at the beginning of home care (t1) and 2 months after the patient had died (t2). Regression models were employed to examine factors related to depression and anxiety in the bereaved caregivers. We interviewed 72 relatives, who were the primary caregiver of a patient. One‐third (31.9%) of caregivers had high anxiety levels and 29.2% had high depression levels (t1, cut‐off = 10). At t2, anxiety and depression had decreased significantly. There were no changes in quality‐of‐life over time. At both points of assessments, quality‐of‐life was lower than in the general population. Relevant factors for higher anxiety and depression in the bereaved caregivers were high levels of distress at t1, insufficient social support and low physical function. Bereaved caregivers were particularly depressed when they had been the spouse of the patient. Healthcare professionals should consider social isolation of caring relatives both during homecare and afterwards. Thus, it seems to be important to routinely offer support to spouses.     

Study of mutual influence between trait anxiety and risk of depression among older couples facing cancer

IntroductionThe present study aims to examine the process of mutual influence in older couples with cancer diagnosis by studying their risk of depression.Materials and methods282 couples with one spouse diagnosed with cancer were selected from the Three-City cohort study. Dyadic analyses were used to determine whether trait anxiety affects the risk of depression and whether a mutual influence process occurs prior and post cancer diagnosis. Cross-sectional analyses were performed at two time-points: before and after receiving the diagnosis.ResultsA higher level of anxiety among cancer patients resulted in a decreased risk of depression among spousal caregivers. Moreover, a higher anxiety among spousal caregivers increased their own risk of depression, but it didn't influence depression risk among cancer patients. While there is an intra-individual relationship between a higher level of trait anxiety and a greater risk of depression prior to cancer diagnosis, there is no cross-influence between spouses.DiscussionThe study findings indicate that a dyadic psychological adjustment process might help older adults to cope with cancer by limiting the risk of depression among spousal caregivers.     

Measuring social relational quality in colorectal cancer: the Social Relational Quality Scale (SRQS)

Objectives: Social relationships are central in Asian communities. Despite colorectal cancer (CRC) incidence increasing in Asian populations the roles of social activity in facilitating adjustment and optimizing coping resources in Asian peoples remains largely unknown. We derived and validated among Chinese CRC patients, an instrument assessing social relational quality to enable study of these social processes. Methods: Qualitative interviews (n=16) generated 22‐items subsequently administered to 166 Chinese CRC survivors. Principal components analyses identified underlying constructs. The draft instrument, plus measures of optimism, affect, physical symptoms, and perceived social support were administered to a second cohort of 234 newly diagnosed Chinese CRC patients. Results: Three factors were extracted (54.44% of the total variance): Family Intimacy(7 items, 33.08%), Family Commitment (5 items, 14.17%), and Friendships (5 items, 7.19%). All subscales were internally consistent (α=0.75–0.82), exhibiting concurrent validity in negative correlations with anxiety and depression and positive correlations with physical and psychological well‐being. Convergent validity was indicated by significant positive correlations with optimism, and divergent validity by insignificant inverse correlations with physical symptoms and moderate correlations with perceived social support. Hierarchical regressions revealed positive correlations of the three subscales with psychological well‐being, controlling for perceived social support (β=0.13–0.28). Good criterion validity was indicated. Conclusion: The Social Relational Quality Scale is a psychometrically sound self‐report measure of social relational quality among Chinese CRC patients and needs further validation among other Asian groups. Copyright © 2008 John Wiley & Sons, Ltd.     

Going beyond social support: Fear of receiving compassion from others predicts depression symptoms in breast cancer patients

Background: Recent studies have highlighted the importance of being able to receive compassion and affiliative signals from others. The main aim of the present study was to explore whether social support and fear of receiving compassion from others are predictors of depression symptoms in a sample of breast cancer patients. Methods: The sample included 86 female patients with non-metastatic breast cancer. Participants were recruited at a Radiotherapy Service in central Portugal and completed validated self-report instruments. Multiple regression analysis were conducted to examine the predictive effects of clinical (cancer stage, comorbidities) and demographic variables (age, education), social support, and fear of receiving compassion from others on depressive symptoms. Results: Fear of receiving compassion from others was the only significant predictor of the model, with a positive effect on depression symptomatology (β = 0.44; p < 0.001). These results suggest that the amount of supportive social contacts and networks may not be as important as cancer patients' ability to receive compassion from others. Conclusions: This is the first study to focus on fear of receiving compassion from others in cancer patients and seems to be a significant contribution for the study of the social factors that may be associated with depression in breast cancer. Psychological screening interviews in breast cancer, besides assessing patients' level of depression and social support, ought to also evaluate the ability to receive empathy and emotional help and support from other people.     

Social support buffers the impact of functional impairments on caregiver psychological well‐being in the context of brain tumor and other cancers

Objective: This study investigated the association between functional impairments of individuals with cancer and caregiver psychological well‐being, and examined the moderating effect of social support. Methods: Sixty‐three caregivers (71% female) of individuals with brain tumor (n=27) and other cancers (n=36) were recruited from community services. Caregivers rated their psychological well‐being on the World Health Organisation Quality of Life measure Brief version, social support on a brief version of the Social Support Questionnaire, and the individuals' functional impairments on the Patient Competency Rating Scale. Results: For caregivers of individuals with brain tumor, better psychological well‐being was associated with lower functional impairment in all domains (r_s=0.33–38, p<0.05), except for cognitive difficulties. For caregivers of individuals with other cancers, better psychological well‐being was associated with lower functional impairment in all domains (r_s=0.30–0.49, p<0.05), with the exception of activities of daily living. For the total caregiver sample, better psychological well‐being was significantly correlated with overall functional impairment (r=0.34, p<0.005) and satisfaction with support (r=0.40, p<0.005). Caregivers supporting individuals with greater functional impairment had better psychological well‐being if they were highly satisfied with their social support. Conclusions: Effective social support is particularly important for caregivers who support individuals with poorer functional status, and this study highlights the need to evaluate caregiver social support interventions in the context of cancer. Copyright © 2009 John Wiley & Sons, Ltd.     

Coping among older-adult, long-term cancer survivors

This research focuses on the coping behavior of older adult, long-term cancer survivors. Specifically, it identifies the personal (including race and gender) and illness/treatment characteristics of survivors that are significantly associated with the use of specific coping styles: planning, acceptance, venting, denial and seeking social support. It also examines the mediating role that these forms of coping play in terms of psychological distress: anxiety, depression and cancer-related worries. Multivariate analysis of data from a random sample of 321 long-term survivors in a major cancer center tumor registry is used to address the above issues. The most prominent forms of coping used by long-term survivors were planning and acceptance; least used were venting and denial. Increased age was associated with lower use of all forms of coping, but cancer type was not. Denial as a form of coping was associated with higher anxiety, depression and cancer-related worries. While race was not found to be a significant predictor of coping style, it was a significant predictor of three dimensions of psychological distress, anxiety, depression and cancer-related worries, with African Americans exhibiting lower levels of distress than Whites. The relevance of these findings for health and social service practitioners is discussed.     

Relationships between supportive care needs and perceived burden in breast cancer survivor–caregiver dyads

While burden in cancer caregivers is high and associated with poor outcomes, little is known about significance of specific supportive care needs’ domains in determining survivors’ or caregivers’ perceived caregiver burden. This cross‐sectional study explored which domains of survivor‐ and caregiver‐reported supportive care needs were most associated with survivor‐ and caregiver‐reported caregiver burden, in breast cancer survivor–caregiver dyads. Cancer survivors (N = 55) and their caregivers (N = 44) completed measures of supportive care needs, anxiety, depression, functional well‐being and perceived caregiver burden. Correlation and linear regression analyses were used to determine relative significance of survivor and caregiver supportive care needs in accounting for variance in survivor and caregiver perceptions of burden. Higher survivor‐perceived caregiver burden and higher caregiver‐perceived difficulty of caregiving were associated with higher levels of survivor and caregiver supportive care needs. Survivors’ psychological needs uniquely contributed to survivors’ self‐perceived burden, and survivors’ sexual needs and caregivers’ work and social needs uniquely contributed to caregivers’ perceived difficulty of caregiving. Caregiver's perceived time spent caregiving was associated with access to services needs but not other needs. Survivor and caregiver supportive care needs and burden appear interdependent. Longitudinal research with larger samples is warranted to examine these relationships.     

Psychological distress in women at risk of hereditary breast/ovarian or HNPCC cancers in the absence of demonstrated mutations

Aim: To examine psychological distress in women at risk of familial breast–ovarian cancer (FBOC) or hereditary non-polyposis colorectal cancer (HNPCC) with absence of demonstrated mutations in the family (unknown mutation).Materials and methods: Two-hundred and fifty three consecutive women at risk of FBOC and 77 at risk of HNPCC and with no present or past history of cancer. They were aware of their risk and had received genetic counseling. Comparisons were made between these two groups, normal controls, and women who were identified to be BRCA1 mutation carriers. The questionnaires Beck Hopelessness Scale (BHS), General Health Questionnaire (GHQ-28), Hospital Anxiety and Depression Scale (HADS) and Impact of Event Scale (IES) were employed to assess psychological distress.Results: No significant differences concerning psychological distress were observed between women with FBOC and women with HNPCC. Compared to mutation carriers for BRCA1, the level of anxiety and depression was significantly higher in the FBOC group with absence of demonstrated mutation. Compared to normal controls, the level of anxiety was higher, while the level of depression was lower in the groups with unknown mutation.Conclusions: Women in the absence of demonstrated mutations have higher anxiety and depression levels than women with known mutation-carrier status. Access to genetic testing may be of psychologically benefit to women at risk for FBOC or HNPCC.     

Caregivers' anxiety and self‐efficacy in palliative care

MYSTAKIDOU K., PARPA E., PANAGIOTOU I., TSILIKA E., GALANOS A. & GOULIAMOS A. (2012) European Journal of Cancer Care 22 , 188–195 Caregivers' anxiety and self‐efficacy in palliative care This study examined the relationship between caregivers' anxiety supporting a patient with advanced cancer and self‐efficacy and their socio‐demographic characteristics, and then whether these variables could influence their self‐efficacy. One hundred and seven caregivers of advanced cancer patients participated in the study and completed the Greek versions of the State–Trait Anxiety Inventory (STAI) and the General Perceived Self‐efficacy Scale (GSE). Significant comparisons were found between State anxiety and female gender (P= 0.009), cohabitation (P= 0.002) and relationship with the patient (P= 0.004); statistically significant associations were found between State, Trait anxiety and self‐efficacy scores of caregivers (P < 0.0005 respectively). A multiple regression model (enter method) showed women (P= 0.005), spouses (P= 0.01) and self‐efficacy (P= 0.02) as the significant predictors of State anxiety. Furthermore, self‐efficacy seemed to be the strongest contributor of trait anxiety (P < 0.0005). Female caregivers and spouses of advanced cancer patients experience more state anxiety levels than men and other caregivers respectively. In addition, caregivers with low self‐efficacy are more likely to have elevated anxiety scores than self‐efficacious caregivers. These findings can help healthcare professionals focus on some problems common to caregivers of cancer patients and plan appropriate interventions.     

Psychological impairments burden and spirituality in caregivers of terminally ill cancer patients

The role of spirituality on the psychological health was mostly investigated through studies conducted in terminally ill patients. However, there are not studies investigating the role of religious and spiritual beliefs on psychological state and on burden dimensions in caregivers. The purpose of this study was to investigate the association between spirituality, burden, and psychological state in caregivers of terminally ill cancer patients. Two hundred caregivers of terminally ill patients with cancer were interviewed using Prolonged Grief Disorder 12 (PG‐12), Hamilton Anxiety Rating Scale (HAM‐A), Hamilton Depression Scale (HAM‐D), Caregiver Burden Inventory (CBI) and System of Belief Inventory (SBI‐15R). The caregiver burden was positively correlated with anxiety, depression and PG‐12 scores. The intrinsic spirituality was a significant predictor of the time‐dependence burden (positively associated); and of the emotional burden (negatively associated). In caregivers of terminally ill cancer patients, higher levels of intrinsic spirituality predicted a higher amount of time devote to caregiving, and also protected against the emotional distress linked to providing assistance.     

An Investigation of the Effect of Attachment on Distress among Partners of Patients with Ovarian Cancer and Their Relationship with the Cancer Care Providers

Caregivers of patients with ovarian cancer experience distress related to caregiving difficulties within cancer care. Attachment insecurity is a well-known protector of distress, particularly as it relates to support from others. Using multivariate analyses, this study sought to determine the contribution of attachment insecurity and experiences with cancer care on symptoms of depression and anxiety, and investigated whether attachment insecurity moderated the relationship between caregiving experiences and distress. Multiple hierarchical regression analyses were conducted as part of a larger cross-sectional questionnaire study of distress among partners of patients with ovarian cancer. Participants (n = 82) were predominantly male, white, had household incomes over $100,000 and postsecondary education. Caregiving experiences explained 56% of the variance in depression, and 28% of the variance in anxiety. Specifically, lack of time for social relations as a result of caregiving significantly predicted depression and anxiety. Attachment anxiety correlated with both depression and anxiety, but attachment avoidance did not. Neither attachment anxiety nor attachment avoidance significantly contributed to distress variance, and neither moderated any of the relationships between caregiving experiences and distress outcomes. This study highlights the importance for cancer care to recognize the effect of caregiving responsibilities upon caregivers’ mental health, regardless of vulnerability to distress.     

Psychological distress related to patterns of family functioning among Japanese childhood cancer survivors and their parents

Objective: Family functioning appears to be a predictor of psychological distress among childhood cancer survivors and their family members; however, relatively little is known about patterns in those families that are psychologically at‐risk. The purpose of this study was to identify distinct clusters of families that include childhood cancer survivors, and to evaluate differences between the clusters with respect to anxiety, depression, and post‐traumatic stress symptoms (PTSS). Methods: Childhood cancer survivors and their parents (247 individuals: 88 adolescent cancer survivors, 87 mothers, and 72 fathers) completed self‐report questionnaires. Perceptions of family functioning were assessed using the Family Relationship Index and its three dimensions (cohesiveness, expressiveness, and conflict), and individuals were classified into groups via a cluster analytic approach. State‐trait anxiety, depression, and PTSS were assessed to all of the participants. Results: The individuals were classified into three types: One cluster featured high cohesiveness, high expressiveness, and low conflict (‘Supportive‐type’, n=102); a second cluster featured low cohesiveness, low expressiveness, and high conflict (‘Conflictive‐type’, n=32); and a third cluster had moderate cohesiveness, moderate expressiveness, and moderate conflict (‘Intermediate‐type’, n=113). Among the three types, an analysis of variance revealed that ‘Conflictive‐type’ members had the highest levels of PTSS, depression, and state–trait anxiety. Conclusions: These findings suggest that perceptions of family functioning are related to psychological distress in family members of childhood cancer survivors. A family‐focused intervention might be a useful approach to targeting emotional distress in these families, particularly for families with a ‘Conflictive‐type’ family member. Copyright © 2009 John Wiley & Sons, Ltd.     

Predictors of change in unmet supportive care needs in cancer

Objective: Patient Reported Outcome (PRO) assessments can assist health professionals to tailor their health practices to the individual needs of patients and improve patient care over time. The present study assessed prospective predictors of unmet supportive care needs in cancer patients over a six‐month period. Methods: Participants were recruited from a regional cancer treatment centre in Australia and completed the Supportive Care Needs Survey (SCNS) at recruitment (n=439; 61.4% response rate) and six months follow‐up (n=396). Hierarchical logistic regression was used to identify predictors of change in unmet needs across each supportive care domain. Predictor variables were socio‐demographic, treatment and psychosocial factors including depression, anxiety, social support, and patient satisfaction. Results: Unmet needs were reported by approximately two‐thirds of patients at baseline and half of patients at six months follow‐up. Having unmet needs at baseline was the strongest predictor of unmet needs at six months. Longer time since diagnosis was a consistent predictor of greater unmet needs, associated with change in physical/daily living, psychological and health system and information unmet needs over time. By contrast, a complex relationship was found in that patient satisfaction, psychosocial and treatment characteristics predicted higher needs in some domains and lower needs in others. Conclusions: Unmet supportive care needs persist over time and psychological needs may emerge later in the illness continuum. Interventions to meet the needs of longer term cancer survivors are needed and should closely articulate with reported supportive care needs. Copyright © 2009 John Wiley & Sons, Ltd.