Anticipatory care planning for community-dwelling older adults at risk of functional decline: a feasibility cluster randomized controlled trial.

OBJECTIVES: To determine the feasibility, implementation and outcomes of an Anticipatory Care Planning (ACP) intervention in primary care to assist older adults at risk of functional decline by developing a personalized support plan. DESIGN: Feasibility cluster randomized control trial. SETTING AND PARTICIPANTS: Eight primary care practices (four in Northern Ireland, United Kingdom and four in the Republic of Ireland) were randomly assigned to either intervention or control arm. Eligible patients were those identified in each practice as 70 years of age or older and assessed as at risk of functional decline. Study participants (intervention n = 34, control n = 31) and research staff were not blinded to group assignment. ANTICIPATORY CARE INTERVENTION: The intervention delivered by a registered nurse including: a) a home-based patient assessment; b) care planning on the basis of a holistic patient assessment, and c) documentation of a support plan. OUTCOME MEASURES: A conceptual framework (RE-AIM) guided the assessment on the potential impact of the ACP intervention on patient quality of life, mental health, healthcare utilisation, costs, perception of person-centred care, and reduction of potentially inappropriate prescribing. Data were collected at baseline and at 10 weeks and six months following delivery of the intervention. RESULTS: All pre-specified feasibility indicators were met. Patients were unanimous in the acceptance of the ACP intervention. Health care providers viewed the ACP intervention as feasible to implement in routine clinical practice with attending community supports. While there were no significant differences on the primary outcomes (EQ-5D-5L: -0.07 (-0.17, 0.04) p = .180; CES-D: 1.2 (-2.5, 4.8) p = .468) and most secondary measures, ancillary analysis on social support showed responsiveness to the intervention. Incremental cost analysis revealed a mean reduction in costs of €320 per patient (95% CI -31 to 25; p = 0.82) for intervention relative to the control. CONCLUSIONS: We successfully tested the ACP intervention in primary care settings and have shown that it is feasible to implement. The ACP intervention deserves further testing in a definitive trial to determine whether its implementation would lead to better outcomes or reduced costs. TRIAL REGISTRATION: Clinicaltrials.gov, ID: NCT03902743 . Registered on 4 April 2019.

Anticipatory care planning intervention for older adults at risk of functional decline: study protocol for a primary care cluster feasibility randomised trial.

BACKGROUND: The treatment and management of long-term health conditions is the greatest challenge facing health systems around the world today. Innovative approaches to patient care in the community such as Anticipatory Care Planning (ACP), which seek to help with the provision of high-quality comprehensive care to older adults at risk of functional decline, require evaluation. This study will evaluate one approach that will include primary care as the setting for ACP. METHODS/DESIGN: This study will help to determine the feasibility for a definitive randomised trial to evaluate the implementation and outcomes of an ACP intervention. The intervention will be delivered by specially trained registered nurses in a primary care setting with older adults identified as at risk of functional decline. The intervention will comprise: (a) information collection via patient assessment; (b) facilitated informed dialogue between the patient, family carer, general practitioner and other healthcare practitioners; and, (c) documentation of the agreed support plan and follow-up review dates. Through a structured consultation with patients and their family carers, the nurses will complete a mutually agreed personalised support plan. DISCUSSION: This study will determine the feasibility for a full trial protocol to evaluate the implementation and outcomes of an (ACP) intervention in primary care to assist older adults aged 70 years of age or older and assessed as being at risk of functional decline. The study will be implemented in two jurisdictions on the island of Ireland which employ different health systems but which face similar health challenges. This study will allow us to examine important issues, such as the impact of two different healthcare systems on the health of older people and the influence of different legislative interpretations on undertaking cross jurisdictional research in Ireland. PROTOCOL VERSION: Version 1, 17 September 2019. TRIAL REGISTRATION: Clinicaltrials.gov, ID: NCT03902743. Registered on 4 April 2019.

Informational needs of family caregivers of people with intellectual disability who require palliative care: a two-phase integrative review of the literature.

BACKGROUND:: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs. AIMS:: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care. METHODS:: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers. FINDINGS:: This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support. CONCLUSION:: It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings.

The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study.

AIM: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. BACKGROUND: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding. DESIGN: Descriptive qualitative study. METHODS: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis. RESULTS: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff. CONCLUSION: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.

A Call for Integrated and Coordinated Palliative Care.

Integrated palliative care is viewed as having the potential to improve service coordination, efficiency, and quality outcomes for patients and family carers. However, the majority of Canadians do not have access to regional, comprehensive, integrated palliative care. Work needs to be directed toward planning palliative care services that is integrated into the healthcare and social care system. To further this goal, it is important to have a conceptual understanding of the meaning of integrated care and its expression in organizational models for the provision of palliative care.

Measuring healthcare integration: Operationalization of a framework for a systems evaluation of palliative care structures, processes, and outcomes.

BACKGROUND: Healthcare integration is a priority in many countries, yet there remains little direction on how to systematically evaluate this construct to inform further development. The examination of community-based palliative care networks provides an ideal opportunity for the advancement of integration measures, in consideration of how fundamental provider cohesion is to effective care at end of life. AIM: This article presents a variable-oriented analysis from a theory-based case study of a palliative care network to help bridge the knowledge gap in integration measurement. DESIGN: Data from a mixed-methods case study were mapped to a conceptual framework for evaluating integrated palliative care and a visual array depicting the extent of key factors in the represented palliative care network was formulated. SETTING/PARTICIPANTS: The study included data from 21 palliative care network administrators, 86 healthcare professionals, and 111 family caregivers, all from an established palliative care network in Ontario, Canada. RESULTS: The framework used to guide this research proved useful in assessing qualities of integration and functioning in the palliative care network. The resulting visual array of elements illustrates that while this network performed relatively well at the multiple levels considered, room for improvement exists, particularly in terms of interventions that could facilitate the sharing of information. CONCLUSION: This study, along with the other evaluative examples mentioned, represents important initial attempts at empirically and comprehensively examining network-integrated palliative care and healthcare integration in general.

Family caregivers' ideal expectations of Canada's Compassionate Care Benefit.

We present the findings of 57 interviews conducted in 2007-2008 with Canadians who have cared for a dying family member to examine their ideal expectations of the Compassionate Care Benefit (CCB) - a social programme providing job security and income support for workers caring for a dying person. Our aims are to (1) appreciate how intended users and other family caregivers view the programme's very nature; (2) identify programme challenges and improvements that emerge from considering family caregivers' ideal expectations; and (3) contribute to a larger evaluative study designed to make policy-relevant recommendations for CCB improvement. Review of transcripts across three respondent groups reveals four categories of ideal expectations: (1) eligibility, (2) informational, (3) timing and (4) financial. Ideal expectations were typically derived from respondents' experiences of care-giving, their knowledge of the programme and, for some, of applying for and/or receiving the CCB. Findings reveal that there are gaps between respondents' ideal expectations and their experienced realities. Such gaps may lead to disappointment being experienced by those who believe they should be eligible for the programme but are not, or should be entitled to receive some form of support that is not presently available. This analysis plays an important role in identifying potential changes for the CCB that may better support family caregivers, in that the ideal expectations serve as a starting point for articulating desirable programme amendments. This analysis also has wider relevance. For jurisdictions looking to create new social programmes to support caregivers based upon labour policy strategies and legislation, this analysis identifies considerations that should be made at the outset of development. For jurisdictions that already have employment-based caregiver support programmes, this analysis demonstrates that programme challenges may not always be met through legislative changes alone but also through measures such as increasing awareness.

The spirit of palliative practice: a qualitative inquiry into the spiritual journey of palliative care physicians.

OBJECTIVE: Much is known about the important role of spirituality in the delivery of multidimensional care for patients at the end of life. Establishing a strong physician-patient relationship in a palliative context requires physicians to have the self-awareness essential to establishing shared meaning and relationships with their patients. However, little is known about this phenomenon and therefore, this study seeks a greater understanding of physician spirituality and how caring for the terminally ill influences this inner aspect. METHOD: A qualitative descriptive study was used involving face-to-face interviews with six practicing palliative care physicians. RESULTS: Conceptualized as a separate entity from religion, spirituality was described by participants as a notion relating to meaning, personal discovery, self-reflection, support, connectedness, and guidance. Spirituality and the delivery of care for the terminally ill appeared to be interrelated in a dynamic relationship where a physician's spiritual growth occurred as a result of patient interaction and that spiritual growth, in turn, was essential for providing compassionate care for the palliative patient. Spirituality also served as an influential force for physicians to engage in self-care practices. SIGNIFICANCE OF RESULTS: With spirituality as a pervasive force not only in the lives of palliative care patients, but also in those of healthcare providers, it may prove to be beneficial to use this information to guide future practice in training and education for palliative physicians in both the spiritual care of patients and in practitioner self care.

Self-reported use of natural health products: a cross-sectional telephone survey in older Ontarians.

BACKGROUND: The self-reported use of natural health products (NHPs) (herbal products and vitamin and mineral supplements) has increased over the past decade in Canada. Because the elderly population might have comorbidities and concurrently administered medications, there is a need to explore the perceptions and behaviors associated with NHPs in this age group. OBJECTIVE: The goal of this study was to assess the use of NHPs in a cohort of older Canadian residents and the characteristics, perceptions, and behaviors associated with NHP use. METHODS: Survey participants aged > or = 60 years were randomly selected from telephone listings in the area of greater Hamilton, Ontario, Canada. Data were collected using a standardized computer-assisted telephone interview system. Self-reported data covering 7 domains were collected: (1) demographics; (2) self-reported 12-month NHP use; (3) reasons for NHP use; (4) self-reported 12-month prescription medication use; (5) expenditures on NHPs; (6) patient-reported adverse events and drug-NHP interactions; and (7) perceptions of physicians' attitudes regarding NHPs. Descriptive statistics were used to compare the characteristics of NHP users with those of nonusers and to assess the characteristics of NHP users across these 7 domains. Multivariate regression analysis was conducted to determine the demographic variables that might be associated with NHP user status. RESULTS: Of 2528 persons identified as age > or = 60 years, 1206 (48%) completed the telephone interview. Six hundred sixteen of these respondents (51%) reported the use of > or = 1 NHP during the previous 12 months. On the initial univariate analysis, younger age and higher income were significantly associated with reporting NHP use (mean age, users vs nonusers, 71.1 vs 72.7 years, respectively; 95% CI, 1.02-1.06; P < 0.001; income more than Can $26,000 was 28% and 22% in users and nonusers, respectively; P = 0.028). One hundred seventy of 616 users (28%) used an NHP to treat the same condition for which they were concurrently receiving a prescription medication, and 43 (25%) had not informed their physicians about their NHP use. Patients' characteristics such as sex, education, smoking status, and self-reported health status did not differ significantly between users and nonusers. In individuals who regularly spent money to purchase NHPs (n = 394), the mean cost was $20.38/mo. NHP expenditure was not significantly associated with age, sex, or income. CONCLUSION: Based on these findings, a substantial proportion of those Ontarians aged > or = 60 years reported NHP use, and there is a need for greater communication with physicians to avoid potential drug-NHP interactions.

Evaluating the effectiveness of community-based dementia care networks: the Dementia Care Networks' Study.

PURPOSE: The Dementia Care Networks' Study examined the effectiveness of four community-based, not-for-profit dementia networks. The study involved assessing the relationship between the types of administrative and service-delivery exchanges that occurred among the networked agencies and the network members' perception of the effectiveness of these exchanges. DESIGN AND METHODS: With the use of a case-study method, the evolution, structure, and processes of each network were documented. Social network analysis using a standardized questionnaire completed by member agencies identified patterns of administrative and clinical exchanges among networked agencies. RESULTS: Differences were found between the four networks in terms of their perceptions of service-delivery effectiveness; perceptions of administrative effectiveness did not factor significantly. Exchanges between groups of agencies (cliques) within each of the four networks were found to be more critical than those between individual agencies within each network. IMPLICATIONS: Integration-measured by the types of exchanges within as opposed to across networks-differentiated the four networks studied. This research contributes to our understanding of the use of multiple measures to evaluate the inner workings of service delivery and their impact on elder health and elder health care.

Organization specific predictors of job satisfaction: findings from a Canadian multi-site quality of work life cross-sectional survey.

BACKGROUND: Organizational features can affect how staff view their quality of work life. Determining staff perceptions about quality of work life is an important consideration for employers interested in improving employee job satisfaction. The purpose of this study was to identify organization specific predictors of job satisfaction within a health care system that consisted of six independent health care organizations. METHODS: 5,486 full, part and causal time (non-physician) staff on active payroll within six organizations (2 community hospitals, 1 community hospital/long-term care facility, 1 long-term care facility, 1 tertiary care/community health centre, and 1 visiting nursing agency) located in five communities in Central West Ontario, Canada were asked to complete a 65-item quality of work life survey. The self-administered questionnaires collected staff perceptions of: co-worker and supervisor support; teamwork and communication; job demands and decision authority; organization characteristics; patient/resident care; compensation and benefits; staff training and development; and impressions of the organization. Socio-demographic data were also collected. RESULTS: Depending on the organization, between 15 and 30 (of the 40 potential predictor) variables were found to be statistically associated with job satisfaction (univariate analyses). Logistic regression analyses identified the best predictors of job satisfaction and these are presented for each of the six organizations and for all organizations combined. CONCLUSIONS: The findings indicate that job satisfaction is a multidimensional construct and although there appear to be some commonalities across organizations, some predictors of job satisfaction appear to be organization and context specific.