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.

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.

The caregiving relationship and quality of life among partners of stroke survivors: a cross-sectional study.

BACKGROUND: Since the majority of stroke survivors return home following their stroke, families play a pivotal role in their care. Few studies have addressed both positive and negative aspects of this role or the broader construct of health-related quality of life (HRQL). Furthermore, little consideration has been given to the context of care in terms of relationship quality, and reciprocity. The present study examined the relationships between caregiver quality of life (HRQL), caregiver role, relationship satisfaction, balance and reciprocity in caregivers of partners who had experienced a stroke. Specific hypotheses were made based on equity theory in social relations. METHODS: Fifty-six partner caregivers completed a postal survey that included measures of HRQL (SF-36), caregiver role (negative and positive aspects), relationship satisfaction, reciprocity and balance. Data were also collected on the care recipients' quality of life (Stroke Specific Quality of Life scale). RESULTS: Compared to a normative sample, caregivers' HRQL was lower for all SF-36 domains. Care recipient and caregiver age, care recipient quality of life and caregiver role (negative) significantly predicted physical component summary scores on the SF-36, while care recipient quality of life and caregiver role (negative) significantly correlated with mental component summary scores. Relationship satisfaction and intrinsic rewards of caregiving were found to be important predictors of positive aspects of the caregiver role. Caregivers who viewed their relationship as less balanced in terms of give and take had significantly greater caregiver burden than those who viewed their relationship as more equitable. CONCLUSIONS: The study highlights the importance of taking a broader approach to examining partner caregiving in the context of stroke, in terms of the caregiving relationship and their influence on the health and well-being of caregivers.

Visitor Restrictions, Palliative Care, and Epistemic Agency: A Qualitative Study of Nurses' Relational Practice During the Coronavirus Pandemic.

Efforts to curb spread of COVID-19 has led to restrictive visitor policies in healthcare, which disrupt social connection between patients and their families at end of life. We interviewed 17 Canadian nurses providing palliative care, to solicit their descriptions of, and responses to, ethical issues experienced as a result of COVID-19 related circumstances. Our analysis was inductive and scaffolded on notions of nurses' moral agency, palliative care values, and our clinical practice in end-of-life care. Our findings reveal that while participants appreciated the need for pandemic measures, they found blanket policies separating patients and families to be antithetical to their philosophy of palliative care. In navigating this tension, nurses drew on the foundational values of their practice, engaging in ethical reasoning and action to integrate safety and humanity into their work. These findings underscore the epistemic agency of nurses and highlight the limits of a purely biomedical logic for guiding the nursing ethics of the pandemic response.

Medical Assistance in Dying: A Scoping Review to Inform Nurses' Practice.

In June 2016, Bill C-14 or Medical Assistance in Dying legislation became law in Canada. With this law came changes to nurses' (ie, nurse practitioner, registered nurse, registered practical nurse) scopes of practice, roles, and responsibilities. While federal law, regulatory, and organizational policies are developed to inform nurses about the practice of medical assistance in dying, there is little evidence examining how nurses' roles and responsibilities are enacted in practice. Therefore, a scoping review was conducted to synthesize the evidence on nurses' roles and responsibilities in relation to medical assistance in dying and to identify gaps in the literature. A secondary aim was to identify organizational supports for nurses to effectively and ethically engage in medical assistance in dying. Using a recognized and rigorous scoping review methodology, the findings from 24 research studies were synthesized in this article. The analysis highlights the importance of effective health care professional engagement with the individual in the decision-making process and of the need to educate, support, and include nurses in providing medical assistance in dying. Overall, the current research on medical assistance in dying is limited in Canada, and more attention is needed on the role of the nurse.

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.

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.

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.

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.

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.

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.

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.