Daryl Bainbridge

Stress processes in caring for an end-of-life family member: Application of a theoretical model

Objectives: Family caregivers play a vital role in maintaining the lives of individuals with advanced illness living in the community. However, the responsibility of caregiving for an end-of-life family member can have profound consequences on the psychological, physical and financial well-being of the caregiver. While the literature has identified caregiver stress or strain as a complex process with multiple contributing factors, few comprehensive studies exist. This study examined a wide range of theory-driven variables contributing to family caregiver stress. Method: Data variables from interviews with primary family caregivers were mapped onto the factors within the Stress Process Model theoretical framework. A hierarchical multiple linear regression analysis was used to determine the strongest predictors of caregiver strain as measured by a validated composite index, the Caregiver Strain Index. Results: The study included 132 family caregivers across south-central/western Ontario, Canada. About half of these caregivers experienced high strain, the extent of which was predicted by lower perceived program accessibility, lower functional social support, greater weekly amount of time caregivers committed to the care recipient, younger caregiver age and poorer caregiver self-perceived health. Conclusion: This study examined the influence of a multitude of factors in the Stress Process Model on family caregiver strain, finding stress to be a multidimensional construct. Perceived program accessibility was the strongest predictor of caregiver strain, more so than intensity of care, highlighting the importance of the availability of community resources to support the family caregiving role.

Do High Symptom Scores Trigger Clinical Actions? An Audit After Implementing Electronic Symptom Screening

PURPOSE Standardized, electronic, symptom assessment is purported to help identify symptom needs. However, little research examines clinical processes related to symptom management, such as whether patients with worsening symptoms receive clinical actions more often. This study examined whether patient visits with higher symptom scores are associated with higher rates of symptom documentation in the chart and symptom-specific actions being taken. METHODS Retrospective chart reviews on cancer patient visits at a regional cancer center. An electronic Edmonton Symptom Assessment Scale (ESAS), a validated tool to measure symptoms, was implemented center-wide to standardize symptom screening at every patient visit. The independent variable was ESAS scores for pain and shortness of breath, categorized by severity: 0 (none), 1-3, 4-6, 7-10 (severe). Outcomes included symptom documentation in the chart on the visit date and symptom-related action(s) taken within 1 week. RESULTS Nine hundred twelve visits were identified. Pain and shortness of breath were documented in 51.8% and 29.7% of charts, and a related-action occurred in 16.9% and 3.9% of charts, respectively. As ESAS severity score category increased from none to severe, the proportion of visits with pain documented increased significantly (36.9%, 49.2%, 55.2%, and 71.4%; P < .001). Likewise, as ESAS score severity increased, the proportion of visits with a pain-related action increased significantly (4.2%, 10.6%, 21.3%, and 37.0%; P < .001). Trends were similar for shortness of breath. CONCLUSION Results show a positive association between higher symptom scores and higher rates of documentation and clinical actions taken. However, symptom-related actions were documented in a minority of visits in which symptoms were noted as severe.

The stress process in palliative cancer care: A qualitative study on informal caregiving and its implication for the delivery of care

Objective: The primary objective of this study was to examine how the comprehensive nature of the Stress Process Model could elucidate on the stressors associated with caring for a palliative cancer patient. Method: A qualitative research strategy involving home-based face-to-face interviews with 12 bereaved family caregivers was used to examine the caregiving experience. Results: The primary stressors associated with caring for the palliative cancer care patients stemmed from care recipient symptoms and personal care needs. The absence of adequate support from the formal health care delivery system was a consistent message from all participants. There was evidence of financial stress primarily associated with the purchase of private home care to supplement formal care. In contrast, the resources that family caregivers relied on to moderate the stressful effects of caregiving included extended family, friends, and neighbors. While the stress of direct caregiving was high, the study revealed that formal care was also a significant source of stress for family caregivers. Conclusion: It was concluded that an appropriately financed, integrated system of care that followed a person-centered philosophy of care would best meet the needs of the patient and his or her family.

A mixed-method evaluation of nurse-led community-based supportive cancer care

Goals of workThe study purpose was to evaluate a nurse-led supportive care clinical case management program in the community using multi-methods to delineate care processes prior to outcome evaluation.Materials and methodsMultiple data sources including program service records, chart reviews and interviews with nurses and key interdisciplinary informants were used to identify population served (coverage and reach), processes of care (implementation), and providers’ perceptions of the effectiveness of the nurse-led program (reaction).Main resultsThe program provided care to over 700 cancer patients in a 1-year period. Nurse-led support interventions were focused on direct care inclusive of teaching/coaching for symptom management, counseling and support, and mobilization of services through system navigation based on an initial comprehensive assessment of supportive care needs.ConclusionsNurse-led models of supportive care have the potential to reduce unmet supportive care needs, improve continuity of care, and overall health-related quality of life that should be tested in future trials.

Health system characteristics of quality care delivery: a comparative case study examination of palliative care for cancer patients in four regions in Ontario, Canada

Background: A number of palliative care delivery models have been proposed to address the structural and process gaps in this care. However, the specific elements required to form competent systems are often vaguely described. Aim: The purpose of this study was to explore whether a set of modifiable health system factors could be identified that are associated with population palliative care outcomes, including less acute care use and more home deaths. Design: A comparative case study evaluation was conducted of ‘palliative care’ in four health regions in Ontario, Canada. Regions were selected as exemplars of high and low acute care utilization patterns, representing both urban and rural settings. A theory-based approach to data collection was taken using the System Competency Model, comprised of structural features known to be essential indicators of palliative care system performance. Key informants in each region completed study instruments. Data were summarized using qualitative techniques and an exploratory factor pattern analysis was completed. Results: 43 participants (10+ from each region) were recruited, representing clinical and administrative perspectives. Pattern analysis revealed six factors that discriminated between regions: overall palliative care planning and needs assessment; a common chart; standardized patient assessments; 24/7 palliative care team access; advanced practice nursing presence; and designated roles for the provision of palliative care services. Conclusions: The four palliative care regional ‘systems’ examined using our model were found to be in different stages of development. This research further informs health system planners on important features to incorporate into evolving palliative care systems.

The Impact of Specialized Oncology Nursing on Patient Supportive Care Outcomes

Meeting the supportive care needs of cancer patients remains a challenge to cancer care systems around the world. Despite significant improvements in the organization of medical care of patients with cancer, numerous surveys of cancer populations demonstrate that significant proportions of patients fail to have their supportive care needs met. One possible solution is the introduction of a care coordinator role using oncology nursing to help ensure that patients’ physical, psychological, and social support needs are addressed. Although having face validity, there is little empirical evidence on the effects of nurse-led supportive care coordinator roles on patient reported supportive care outcomes. In this article the authors present the results of a prospective longitudinal cohort study of 113 patients referred to a community-based specialist oncology nursing program. Using validated instruments they found significant improvements in patient-reported outcomes in key supportive care domains: unmet needs, quality of life, and continuity of care, as well as a shift in patterns of health resource utilization from acute care settings to the community over the course of the intervention. The results of this study are important in supporting the design and development of controlled trials to examine provider roles in the coordination of supportive cancer care.

Cancer Patients' Function, Symptoms and Supportive Care Needs: A Latent Class Analysis Across Cultures

PurposePatient-reported outcomes (PROs) are an umbrella term covering a range of outcomes, including symptoms, functioning, health-related quality of life, and supportive care needs. Research regarding the appropriate PRO questionnaires to use is informative. A previously published latent class analysis (LCA) examined patterns of function, symptoms, and supportive care needs in a sample of US cancer patients. The current analysis investigated whether the findings from the original study were replicated in new samples from different countries and whether a larger sample combining all the data would affect the classes identified.MethodsThis secondary analysis of data from 408 Japanese and 189 Canadian cancer patients replicated the methods used in the original LCA using data from 117 US cancer patients. In all samples, subjects completed the EORTC-QLQ-C30 and Supportive Care Needs Survey Short Form-34 (SCNS-SF34). We first dichotomized individual function, symptom, and need domain scores. We then performed LCA to investigate the patterns of domains for each of the outcomes, both in the individual country samples and then combining the data from all three samples.ResultsAcross all analyses, class assignment was made by level of function, symptoms, or needs. In individual samples, only two-class models (“high” vs. “low”) were generally identifiable while in the combined sample, three-class models (“high” vs. “moderate” vs. “low”) best fit the data for all outcomes.ConclusionsIn this analysis, the level of burden experienced by patients was the key factor in defining classes.

Measuring horizontal integration among health care providers in the community: an examination of a collaborative process within a palliative care network

Abstract In many countries formal or informal palliative care networks (PCNs) have evolved to better integrate community-based services for individuals with a life-limiting illness. We conducted a cross-sectional survey using a customized tool to determine the perceptions of the processes of palliative care delivery reflective of horizontal integration from the perspective of nurses, physicians and allied health professionals working in a PCN, as well as to assess the utility of this tool. The process elements examined were part of a conceptual framework for evaluating integration of a system of care and centred on interprofessional collaboration. We used the Index of Interdisciplinary Collaboration (IIC) as a basis of measurement. The 86 respondents (85% response rate) placed high value on working collaboratively and most reported being part of an interprofessional team. The survey tool showed utility in identifying strengths and gaps in integration across the network and in detecting variability in some factors according to respondent agency affiliation and profession. Specifically, support for interprofessional communication and evaluative activities were viewed as insufficient. Impediments to these aspects of horizontal integration may be reflective of workload constraints, differences in agency operations or an absence of key structural features.

Factors associated with not receiving homecare, end-of-life homecare, or early homecare referral among cancer decedents: A population-based cohort study.

Publicly funded homecare has been shown to reduce acute care use and improve quality of life for those nearing end-of-life (EOL). Yet despite the known benefits of homecare, many EOL cancer patients never receive these services. We used administrative data on all cancer decedents in Ontario, Canada in 2006 to determine predictive factors of not receiving homecare, not receiving EOL homecare, and late initiation of EOL homecare. 22,262 decedents met the eligibly criteria, 25% of whom never received homecare in the last six months of life. A logistic regression found that cancer disease site, having a comorbidity (OR: 1.15, 95% CI: 1.1-1.2), region of residence, shorter cancer survival (OR: 2.09, 95% CI: 1.8-2.4), being male (OR: 1.25, 95% CI: 1.2-1.3), lower income (OR: 1.06, 95% CI: 1.03-1.08), older age (OR: 1.03, 95% CI: 1.02-1.05), and less prior emergency department use were significant factors associated with not receiving homecare (p<0.001). Individuals with hematological cancer (OR: 1.57, 95% CI: 1.3-1.8) were less likely to receive homecare in their final months. Some of these covariates also predicted not receiving EOL homecare and late referral to these services (p<0.05). The systematic differences in homecare use that we identified can help to guide strategies for improving access to these important services.

What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators

Objectives There has been little research conducted to understand the essential meaning of quality, community-based, end-of-life (EOL) care, despite the expansion of these services. The purpose of this study was to define what matters most for EOL care from the perspective of a diverse range of palliative care providers in the community who have daily encounters with death and dying. Methods We used interviews to explore the perceptions of providers and administrators from 14 specialised palliative care teams in Ontario, Canada. Participants were prompted with the question ‘What matters most for EOL care?’ Responses were analysed using a phenomenological approach to derive themes depicting the universal essence of EOL care. Results Data from 107 respondents were obtained and analysed, from which 40 formulated concepts emerged; these were further grouped into 9 themes. Of the respondents, 39% were nurses, 19% physicians, 27% were supervisors or executives and 15% other. The most predominate concept was that Patients Wishes are Fulfilled, cited by almost half the respondents. The most prominent themes were Addressing the Non-physical Needs, Healthcare Teams’ Nature of Palliative Care Delivery, Patient Wishes are Honoured, Addressing the Physical Needs, Preparing for and Accepting Death, Communication and Relationship Development, and Involving and Supporting the Family. Conclusions 9 critical domains of EOL care evolved from the interviews, indicating that quality EOL care extends beyond managing physical pain, but includes a holistic perspective of care, a healthcare team dedicated to the EOL journey and a patient-centred pathway. Tailoring the provision of care to consider these important elements plays a critical role in supporting a positive EOL experience for patients and families.