A dyadic examination of patients' and caregivers' attachment orientations and mutually supportive care in cancer caregiving.

OBJECTIVE: Families play a pivotal role in supporting one another during cancer. Research suggests that supportive care interactions between patients and their caregivers can have a positive effect on the physical health and well-being of both members of the dyad. However, few studies have investigated how patient and caregiver personality characteristics intersect with their perceptions of supportive exchanges. Adopting an attachment theory perspective, our aim was to examine the dyadic effects of patient and caregiver attachment orientations on mutually supportive care. METHODS: Patients (n = 103) receiving cancer care and their caregivers (n = 99) completed a survey that comprised measures of attachment orientations (Experiences in Close Relationships Modified scale), and mutually supportive care (Shared Care Inventory, SCI-3): communication, decision-making and reciprocity. RESULTS: Actor-Partner Interdependence Models (APIMs) were used to examine the association between participants' attachment orientations on their own (actor effects) SCI-3 outcomes and those of the other person within the dyad (partner effects). Across the APIMs, the tendency was for an inverse relationship between attachment (anxious and avoidant orientations) and mutually supportive care. Inspection of the effects and dyadic patterns supported actor and couple models. CONCLUSIONS: Using a dyadic approach, it was possible to study both intrapersonal and interpersonal effects. Our findings point to interdependence within the cancer caregiving relationship and underscore the importance of considering how individual and relational ways of responding influence support. Attachment theory provides a framework for explaining the observed relationships and a basis for therapeutic intervention.

Unregulated care providers' engagement in palliative care to older clients and their families in the home setting: a mixed methods study.

BACKGROUND: Unregulated care providers (UCPs) are at the forefront of direct client care in the community. Their services are required to meet the demand for home-based palliative care from a growing older population, yet understanding of UCPs involvement in care is limited. The study aimed to identify the types and frequencies of tasks performed by UCPs in home-based palliative care to older clients (> 65 years) and their families and to describe UCPs' engagement in care, and barriers and facilitators to their work. METHODS: A mixed method approach was used comprising a quantitative retrospective chart review of UCPs' tasks (n = 66), qualitative content analysis of progress notes from clients' charts (n = 85), and thematic analyses of in-depth interviews with UCPs (n = 10). RESULTS: A thematic structure was derived from analyses and integration of data from the chart review and interviews. The themes reflect the physical, affective, and relational aspects of UCPs involvement in the care of clients and families at the end of life. The findings indicate that although a significant proportion (63%) of the 13, 558 UCP tasks identified were directed toward meeting clients' physical care needs, their presence in the home, made UCPs an important source of information on the client's condition; observing and appraising the situation. Further, the nature of their work and frequent interactions with clients and families also presented opportunities for UCPs to provide emotional support; a role UCPs felt was integral to their work. CONCLUSIONS: The study highlights the challenging nature of palliative care to older clients and their families whose needs are often complicated, situated within the unique environment of home care where supervision of UCPs is at a distance. Challenges and facilitators to UCPs' work in this context are discussed with recommendations to support UCPs in their roles.

A qualitative investigation of the roles and perspectives of older patients with advanced cancer and their family caregivers in managing pain in the home.

BACKGROUND: Pain in advanced cancer is complex and multifaceted. In older patients comorbidities and age-related functional decline add to the difficulties in managing cancer pain. The current emphasis on care in the community, and preference by patients with life-limiting disease to receive care in the home, has meant that patients and their family caregivers have become increasingly responsible for the day-to-day management of cancer pain. An appreciation of patients' and caregivers' roles and perspectives managing pain is, therefore, fundamental to addressing cancer pain in this setting. Consequently, we sought to explore and describe their perspectives and roles. METHODS: A qualitative descriptive approach was used. Semi-structured interviews were conducted with a purposeful sample of patient- family caregiver dyads. Participants included 18 patients aged 65 years and over, with advanced cancer, receiving palliative care at home, and 15 family caregivers. The interview data were analysed using thematic analyses. Strategies were used to establish rigour. RESULTS: Two main themes were identified. The first theme, "Communicating the pain", represented pain assessment and incorporated four subthemes in which participants described: their roles in pain assessment, the identification and expression of pain, and the communication of pain between patients and caregivers. The second theme, "Finding a solution", comprised of four subthemes that reflected participants' roles and approaches in controlling pain; as well as their beliefs about cancer pain control, experience with side effects, and perspectives on the goals of treatment. CONCLUSIONS: The findings support other studies in identifying knowledge and attitudinal barriers to pain control; while adding to the literature by highlighting practical and relational barriers faced by older patients and their family caregivers. Health care professionals can do much to address the barriers identified by: correcting misconceptions regarding cancer pain, facilitating the communication of pain within dyads, and ensuring that patients and family caregivers have the knowledge, skills, and ability to assess and implement pain treatment strategies. This support needs to be individually tailored to meet the ongoing needs of both members of the dyad so that the shared goals of pain management are accomplished.

Cancer-related pain in older adults receiving palliative care: patient and family caregiver perspectives on the experience of pain.

BACKGROUND: Despite an emphasis on pain management in palliative care, pain continues to be a common problem for individuals with advanced cancer. Many of those affected are older due to the disproportionate incidence of cancer in this age group. There remains little understanding of how older patients and their family caregivers perceive patients' cancer-related pain, despite its significance for pain management in the home setting. OBJECTIVES: To explore and describe the cancer pain perceptions and experiences of older adults with advanced cancer and their family caregivers. METHODS: A qualitative descriptive approach was used to describe and interpret data collected from semistructured interviews with 18 patients (≥65 years of age) with advanced cancer receiving palliative care at home and their family caregivers. RESULTS: The main category 'Experiencing cancer pain' incorporated three themes. The theme 'Feeling cancer pain' included the sensory aspects of the pain, its origin and meanings attributed to the pain. A second theme, 'Reacting to cancer pain', included patients' and family caregivers' behavioural, cognitive (ie, attitudes, beliefs and control) and emotional responses to the pain. A third theme, 'Living with cancer pain' incorporated individual and social-relational changes that resulted from living with cancer pain. CONCLUSIONS: The findings provide an awareness of cancer pain experienced by older patients and their family caregivers within the wider context of ongoing relationships, increased patient morbidity and other losses common in the aged.

Impact of patient smoking behavior on empathic helping by family caregivers in lung cancer.

PURPOSE/OBJECTIVES: To test the impact of patient smoking behavior on family caregiver judgments of responsibility, emotions, empathic responses, and helping behavior. DESIGN: Structural equation modeling. SETTING: Five oncology outpatient settings in Canada. SAMPLE: 304 dyads consisting of patients with lung cancer and their primary caregivers. METHODS: Self-report questionnaires, abstracted medical record data, confirmatory factor analysis, and structural equation modeling. MAIN RESEARCH VARIABLES: Smoking history, judgments of responsibility for controlling the disease, anger, pride, empathic responses, and helping behaviors. FINDINGS: The impact of patient smoking behavior on caregiver help was mediated by caregiver judgments of responsibility, affective reactions of anger and pride, and empathic responses by caregivers. CONCLUSIONS: When patients continued to engage in smoking behavior, despite a diagnosis of lung cancer, caregivers tended to ascribe more responsibility and feel more anger and less pride in the patients' efforts to manage the disease, therefore placing caregivers at risk for less empathy and helping behavior. IMPLICATIONS FOR NURSING: Caregiver blame and anger must be assessed, particularly when the patient with lung cancer continues to smoke. If caregiver judgments of blame and anger are evident, then an attribution approach is indicated involving a dialogue between the caregiver and the patient, with the aim of enhancing the caregiver's understanding of how negative attributions and linked emotions impact his or her ability to engage in empathic helping behaviors.

A comparison of patient and family caregiver prospective control over lung cancer.

AIM: This paper is a report of our secondary analysis of patient and family caregiver prospective control in lung cancer. BACKGROUND: Control beliefs underlie self-care in sickness and health. Self-care often involves 'shared' activities between the afflicted individual and caregiving family and friends. However, depending on how control is perceived, conflicts can occur in decision-making thus jeopardizing optimal self-care. We need to comprehend how control beliefs compare between patients and caregivers and how their control beliefs are linked with dealing with serious illness. METHODS: Based on questionnaire data collected in our larger study between September 2005 and February 2009, we conducted exploratory comparative analyses of 304 patients' and caregivers' control beliefs in managing lung cancer. Eight 5-point response items captured prospective control. Exploratory factor analysis with promax rotation was conducted to compare dyadic perceptions on the dimensionality of prospective control. We also conducted exploratory correlations between control beliefs and smoking cessation, attributional reactions, caregiver helping and symptom reports. RESULTS: Principal component analysis identified the same factors for patients and caregivers: factor 1, Fate control and factor 2, Team control. Patient and caregiver 'Fate' and 'Team' control sub-scales were respectively associated with hope, caregiver helping and patient smoking cessation. CONCLUSION: Clinicians need to support, adapt or develop a philosophy of cancer care that is inclusive of partnerships, drawing on beliefs of patients and caregivers that controlling lung cancer is a team effort which in turn is tentatively linked to patient smoking cessation, positive emotions and caregiver helping.

Assessing agreement between terminally ill cancer patients' reports of their quality of life and family caregiver and palliative care physician proxy ratings.

CONTEXT: Proxy ratings, if valid, may provide an alternative approach to evaluating patient quality of life (QoL) at the end of life. OBJECTIVES: To examine agreement between terminally ill cancer patients' self-reported QoL and proxy assessment of patient QoL by their family caregiver (FCG) and palliative care physicians (PCPs) at two time points. METHODS: Patients admitted to an acute palliative care unit and their FCGs and PCPs completed the McGill Quality of Life Questionnaire (MQOL) at Days 3 and 6 after admission. Response bias and response precision were examined at the individual and group levels. Furthermore, we examined patient factors affecting agreement and responsiveness of proxy MQOL scores to changes in patients' QoL between Days 3 and 6. RESULTS: Statistically and clinically significant mean differences were detected between the patient and both proxy groups' reports of QoL on Day 3, with the magnitude of the differences decreasing somewhat by Day 6. Proxies underestimated patients' QoL compared with patients' self-report. Response precision based on intraclass correlation values and proportion of approximate agreement was poor to fair at both time points. Agreement was better for patients with greater physical burden and more cognitive difficulties. Proxies' responsiveness to change from Day 3 to Day 6 was low, and proxies were not able to detect minimally important changes in QoL. CONCLUSION: The findings suggest that moderate agreement between patient and proxy ratings of QoL develops over time but that precision at the individual level, which is more clinically relevant, is less reliable. New strategies for improving proxy reliability are needed.

Prognostic acceptance and the well-being of patients receiving palliative care for cancer.

PURPOSE: To identify the impact of prognostic acceptance/nonacceptance on the physical, psychological, and existential well-being of patients with advanced cancer. PATIENTS AND METHODS: A Canadian multicenter prospective national survey was conducted of patients diagnosed with advanced cancer with an estimated survival duration of 6 months or less (n = 381) receiving palliative care services. RESULTS: Of the total number of participants, 74% reported accepting their situation and 8.6% reported accepting with "moderate" to "extreme" difficulty. More participants with acceptance difficulties than without acceptance difficulties met diagnostic criteria for a depressive or anxiety disorder (chi(2) = 8.67; P < .01). Nonacceptors were younger (t = 4.13; P < .000), had more than high school education (chi(2) = 4.69; P < .05), and had smaller social networks (t = 2.53; P < .05) than Acceptors. Of the Nonacceptors, 42% described their experience as one of "moderate" to "extreme" suffering compared with 24.1% of Acceptors (chi(2) = 5.28; P < .05). More than one third (37.5%) of Nonacceptors reported feeling hopeless compared with 8.6% who had no difficulty accepting (chi(2) = 24.76; P < .000). Qualitatively, participants described active and passive coping strategies that helped them accept what was happening to them, as well as barriers that made it difficult to come to terms with their current situation. CONCLUSION: The challenge of coming to terms with a terminal prognosis is a complex interplay between one's basic personality, the availability of social support, and one's spiritual and existential views on life. Nonacceptance appears to be highly associated with feelings of hopelessness, a sense of suffering, depression, and anxiety, along with difficulties in terms of social-relational concerns.

Family caregivers' assessment of symptoms in patients with advanced cancer: concordance with patients and factors affecting accuracy.

The purposes of the study were to examine the concordance between patients' and family caregivers' assessments of patients' symptoms, and to identify demographic and psychosocial factors that affect levels of agreement. Sixty-six patients with advanced cancer receiving palliative care, and their primary, informal caregivers assessed patients' symptoms using the Memorial Symptom Assessment Scale (MSAS). Levels of agreement for individual symptoms ranged from poor to excellent (interclass correlation coefficient 0.07-0.75). Analysis of the group means using paired t-tests revealed significant differences for the MSAS subscales (psychological, physical, and general distress index), and for four of the 12 physical symptoms and five of the six psychological symptoms. The magnitude of the observed differences indicated a small to moderate bias for caregivers to overestimate, which was more marked for psychological than for physical symptoms. A number of factors associated with the caregiver (particularly the emotional state, the burden of providing care, and male gender) and the patient (the perception of being a burden to others) were significantly correlated with levels of disparity on some measures. The findings are consistent with the growing body of literature on the validity of proxy respondents' assessments of patients' symptoms.

Self-perceived burden to others: patient and family caregiver correlates.

AIMS: To provide further evidence about the prevalence and correlates of the sense of "self-perceived burden" (SPB) to others, and to examine its association with caregiver reports of burden. METHODS: The participants were 65 patients with advanced cancer and their family caregivers. Patients completed measures of SPB and family members completed a caregiver burden scale. RESULTS: SPB was experienced at minimal to mild levels by 35% of patients, and at moderate to extreme levels by another 28%. It was correlated with some physical symptoms, but more frequently with psychological symptoms. The family members of patients who reported that SPB was a significant problem had higher scores on the caregiver burden scale than family members of other patients (p=0.048), although the overall correlation was modest. CONCLUSIONS: SPB is a common and distressing concern for many patients receiving palliative care and is associated with a number of other distressing concerns.

Desire for euthanasia or physician-assisted suicide in palliative cancer care.

OBJECTIVE: To investigate the attitudes of terminally ill individuals toward the legalization of euthanasia or physician-assisted suicide (PAS) and to identify those who would personally desire such a death. DESIGN: In the Canadian National Palliative Care Survey, semistructured interviews were administered to 379 patients who were receiving palliative care for cancer. Patients who expressed a desire for physician-hastened death were followed prospectively. MAIN OUTCOME MEASURES: Attitudes toward the legalization of euthanasia or PAS were determined, as was the personal interest in receiving a hastened death. Demographic and clinical characteristics were also recorded, including a 22-item structured interview of symptoms and concerns. RESULTS: There were 238 participants (62.8%) who believed that euthanasia and/or PAS should be legalized, and 151 (39.8%) who would consider making a future request for a physician-hastened death. However, only 22 (5.8%) reported that, if legally permissible, they would initiate such a request right away, in their current situations. This desire for hastened death was associated with lower religiosity (p=.010), reduced functional status (p=.024), a diagnosis of major depression (p<.001), and greater distress on 12 of 22 individual symptoms and concerns (p<.025). In follow-up interviews with 17 participants, 2 (11.8%) showed instability in their expressed desire. CONCLUSION: Among patients receiving palliative care for cancer, the desire to receive euthanasia or PAS is associated with religious beliefs; functional status; and physical, social, and psychological symptoms and concerns. Although this desire is sometimes transitory, once firmly established, it can be enduring.

Suffering with advanced cancer.

PURPOSE: The alleviation of suffering is a central goal of palliative care, but little research has addressed the construct of suffering as a global experience of the whole person. We inquired into the sense of suffering among patients with advanced cancer to investigate its causes and correlates. PATIENTS AND METHODS: Semistructured interviews were administered to 381 patients. The interviews inquired about physical symptoms, social concerns, psychological problems, and existential issues. We also asked, "In an overall, general sense, do you feel that you are suffering?" RESULTS: Almost half (49.3%) of respondents did not consider themselves to be suffering, and 24.9% felt that they suffered only mildly. However, 98 participants (25.7%) were suffering at a moderate-to-extreme level. The latter participants were more likely to experience significant distress on 20 of the 21 items addressing symptoms and concerns; the highest correlations were with general malaise (rho [rho]= 0.56), weakness ( = 0.42), pain ( = 0.40), and depression ( = .39). In regression analyses, physical symptoms, psychological distress, and existential concerns, but not social issues, contributed to the prediction of suffering. In qualitative narratives, physical problems accounted for approximately half (49.5%) of patient reports of suffering, with psychological, existential, and social concerns accounting for 14.0%, 17.7%, and 18.8%, respectively. CONCLUSION: Many patients with advanced cancer do not consider themselves to be suffering. For those who do, suffering is a multidimensional experience related most strongly to physical symptoms, but with contributions from psychological distress, existential concerns, and social-relational worries.

Feeling like a burden: exploring the perspectives of patients at the end of life.

The issue of caregiver burden within the context of end-of-life care has received considerable attention. Less focus has been directed at the corresponding issue of care recipients' perceptions of being a burden to others, referred to as "self-perceived burden". The purpose of this interpretative phenomenological study was to gain a better understanding of self-perceived burden from the patient's perspective. Fifteen patients (ten women, five men) from Ottawa, Canada, receiving palliative care for advanced cancer were interviewed. Participants' experiences of self-perceived burden were reflected in two major interrelated categories. "Concern for Others" included the physical, social, and emotional hardships participants believed they were creating for others, as well as concerns about the future and likely effect of their death on those around them. "Implications for Self" reflected feelings of responsibility for causing hardships to others, resulting in distress and a diminished sense of self. A third category, "Minimizing Burden", was also identified, which described coping strategies used by participants to alleviate the burden on others and to reduce the negative impact on themselves. These categories and themes are discussed from the perspective of social psychology theory pertaining to the maintenance of equity in relationships.

A burden to others: a common source of distress for the terminally ill.

Recent research into the desire for death among people with terminal illness has begun to recognize the importance of "feeling oneself a burden to others" as a factor in suicidal behaviour. In this study, 69 patients with advanced cancer underwent semi-structured interviews. The sense of self-perceived burden was found to be a common experience, reported by 39.1% of participants as a minimal or mild concern and by 38% as a moderate to extreme concern. The sense of burden showed a low correlation with physical symptoms (r = 0.02-0.24) and higher correlations with psychological problems (r = 0.35-0.39) and existential issues (r = 0.45-0.49). Comparisons of participants with high or low levels of self-perceived burden showed the importance of this factor for overall quality of life. In summary, self-perceived burden is an important but underestimated dimension of social cognition in the medically ill.

Evaluating palliative care: bereaved family members' evaluations of patients' pain, anxiety and depression.

Palliative care surveys often rely on bereaved family members to act as proxies to provide information on patient care at the end of life, after the patient's death. However, when comparing bereaved family members' assessments with those of the patients, agreement is found to be better for symptoms that are more concrete and observable than subjective aspects such as psychological symptoms and pain. To date, little is known about how proxies actually evaluate these types of symptoms. The present study used retrospective verbal protocol analysis to elucidate the thought processes of 30 bereaved relatives during their evaluations of patients' pain, anxiety and depression. The qualitative analysis raised awareness of the difficulties experienced by proxies when discerning the presence of symptoms. It also provided insights into the cues and strategies used when making decisions, contributing to a fuller understanding of how proxies distinguish symptoms. Recommendations are made to improve the design of retrospective palliative care surveys.

How do proxies' perceptions of patients' pain, anxiety, and depression change during the bereavement period?

The retrospective approach in palliative care research provides valuable insight into death and dying, and the effectiveness of palliative care. The method involves collecting information from proxies (usually significant others) after the patient's death. This exploratory study investigates whether proxies' accounts differ during bereavement, and provides possible explanations for why discrepancies might occur. Thirteen bereaved family members were interviewed, at three to five months and seven to nine months after the patient's death, about the patient's pain, anxiety, and depression, using semi-structured interviews and the symptom rating scale from the Views of Informal Carers-Evaluation of Services (VOICES) interview. Analysis of VOICES ratings over time indicated consistency for anxiety, while pain and depression ratings were variable and, in many cases, less severe and less frequent with the passage of time. Qualitative analysis of proxies' interview transcripts revealed a number of categories and themes that could be explained within the psychological and palliative care literature. The findings suggest that timing is an important consideration when gathering information from proxies retrospectively.