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.

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.

Public health nurses' experiences during the H1N1/09 response.

OBJECTIVE: H1N1/09 was the first pandemic flu ever responded to with mass vaccinations. Public health nurses (PHNs) were pivotal in implementing the H1N1/09 vaccination clinics. With the ongoing threat of pandemic influenza and other viral outbreaks, much can be learned from these PHNs' H1N1/09 experiences. This study's purpose was to explore PHNs' experiences in the H1N1/09 mass vaccination clinics. DESIGN AND SAMPLE: In a qualitative interpretive description, 23 PHNs (16 immunizers, seven supervisors) who worked in a large Canadian municipal public health agency, participated in semistructured interviews. RESULTS: Three overarching themes were identified. 'Anticipating an Emergency' discusses participants' experiences learning about the pandemic response and their role preparation. 'Surviving the Chaos' reflects the challenges of the clinics, particularly during the first few hectic weeks of the response. 'Persevering Over Time' encompasses participants' experiences as they became familiar with clinics' operations and their own responsibilities. CONCLUSIONS: Participants' experiences have implications for future public health pandemic planning and research. Key recommendations include to communicate with PHNs in a timely manner about their clinic roles, and to provide PHNs with appropriate training to optimize clinics' operations. This will help support PHNs in their roles to protect the public and provide quality population care.

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.

Being Parent Caregivers for Adult Children with Schizophrenia.

Parent caregivers support the health and well-being of their adult children with schizophrenia. As a result, parent caregivers spend vast amounts of time providing care, which necessitates changes to their relationships and lives. In this qualitative study, the experiences of parent caregivers for adult children with schizophrenia were explored. Interpretive Description guided the study design, and data were collected through interviews with 12 English-speaking participants. Data were analyzed according to conventional content analysis. The themes "Uncertainty, Change, and Challenges" and "The Meaning of It All" help to articulate the participants' experiences. Overall, the participants reported tremendous distress in their roles. This was compounded by difficulties accessing and navigating the healthcare system and interactions with police. Effective strategies are needed to help parent caregivers cope within their role and gain access to timely and appropriate care.

Exploring the Experiences of Parent Caregivers of Adult Children With Schizophrenia: A Systematic Review.

This is a qualitative evidence synthesis on the experiences of parents caring for their adult child with schizophrenia. The Joanna Briggs Methodology for systematic reviews guided the study and standard systematic review procedures were followed. Content analysis was used to synthesize findings from the five studies included into the following categories: 'Resources,' 'Loss,' 'Psychological Distress,' 'Effects on Family,' and 'Framing the Experience.' Findings suggest that parent caregivers struggle to navigate services and need greater support to protect their mental and physical health. From a research perspective, factors influencing parents' abilities to stay engaged in caregiving warrant further exploration.

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.

The meaning of being an oncology nurse: Investing to make a difference.

The landscape of cancer care is evolving. Oncology nursing continues to develop and respond to the changing needs of patients with cancer and their families. There is limited understanding of what it means to be an oncology nurse, as well as the factors that facilitate or hinder being an oncology nurse. This study used an interpretive phenomenological approach. Six nurses from two in-patient units in a tertiary care teaching facility were interviewed. The overarching theme, Investing to Make a Difference, reflected how oncology nurses invested in building relationships with patients and their family members and invested in themselves by developing their knowledge and skills and, eventually, their identities as oncology nurses. In turn, these investments enhanced their role, and were seen to make a difference in the lives of patients and their family members by supporting them through the cancer journey. Implications of these findings for oncology nursing are highlighted as they relate to nursing practice, education, research, and leadership.

Battling a Tangled Web: The Lived Experience of Nurses Providing End-of-Life Care on an Acute Medical Unit.

Meeting the heath care needs of patients at the end of life is becoming more complex. In Canada, most patients with life-limiting illness will die in hospitals, many on medical units. Yet, few studies have qualitatively investigated end-of-life care (EOLC) in this context, or from the perspectives of nurses providing EOLC. The purpose of this study was to seek to understand the lived experience of nurses on a medical unit providing EOLC to patients. Interpretive phenomenology guided the method and analysis. Individual face-to-face interviews were conducted with 10 nurses from 2 hospital medical units. The underlying essence of these nurses' experiences was that of "battling a tangled web." Battling a tangled web represented their struggles in attempting to provide EOLC in an environment that was not always conducive to it. Seven themes were generated from the analysis: caring in complexity, caught in a tangled web, bearing witness to suffering, weaving a way to get there: struggling through the process, creating comfort for the patient, working through the dying process with the family, and finding a way through the web. The findings contribute to an understanding of the experiences of nurses in providing EOLC on a medical unit including perceived facilitators and barriers.

A social construction of the development of ICU nursing in Canada, 1960 to 2002.

BACKGROUND: The early 1960s marked the opening of intensive care units (ICUs) in several hospitals across Canada. From the beginning, registered nurses constituted the largest body of health care providers in the ICU environment and they were the central provider of hands-on care to patients and families. From a historical perspective, however, a limited body of knowledge exists specific to the development of ICU nursing in Canada. PURPOSE: In this study we explored the development of ICU nursing in Canada from 1960 to 2002 using a social history approach that emphasized the creation of an historical account from the perspective of the everyday experiences of ICU nurses. METHOD: A social history approach was used. Primary sources included oral history interviews, documents and records, published professional literature between 1960 and 2002, as well as photographs. The study received ethics approval from the research ethics boards at the University of Ottawa (for conducting oral history interviews), as well as Queen's University (for access to archives at the Kingston General Hospital). RESULTS: The findings of this study provide a perspective on how ICU nurses learned and created new knowledge, as well as the establishment of an ICU nursing identity at both the individual and national levels.

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.

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.