Yun-Hee Jeon

Achieving a balanced life in the face of chronic illness

The increasing prevalence of chronic disease is a driver of health system reform in most economically advanced nations. A consistent theme within these reforms is building greater patient-centredness into the health care delivery. This study aims to develop an in-depth understanding of the experience of patients and family carers affected by chronic illness that will be the basis on which to propose policy and health system interventions that are patient-centred. Participants struggled with the ongoing tasks of balancing their lives with the increasing demands and intrusion of chronic illness. Their attempts to achieve a balance were seriously hampered by fragmented services, complexity in navigating health services, relationships with health professionals and others, and co-morbidity. Future policy directions include designing models of care and infrastructure that enable patients and their family carers to balance life and illness, and aligning patient-centred care not only within health services but also with community and social support services.

Staff outcomes from the Caring for Aged Dementia Care REsident Study (CADRES): A cluster randomised trial

BACKGROUND Dementia care mapping and person centred care are well-accepted as processes for improving care and well-being for persons with dementia living in the residential setting. However, the impact of dementia care mapping and person centred care on staff has not been well researched. OBJECTIVES The impact of person centred care and dementia care mapping compared to each other and to usual dementia care on staff outcomes was examined in terms of staff burnout, general well-being, attitudes and reactions towards resident behavioural disturbances, perceived managerial support, and quality of care interactions. DESIGN A cluster-randomised, controlled trial. SETTINGS The study was conducted between 2005 and 2007 in 15 residential aged care sites in the Sydney metropolitan area, Australia, with comparable management structures, staffing mix and ratios, and standards of care. PARTICIPANTS 194 consenting managers, nurses, therapists and nurse assistants working in the participating sites. METHODS Intervention care sites received training and support in either person centred care (n=5) or dementia care mapping (n=5); control sites continued with usual dementia care (n=5). Staff outcomes of those three groups were assessed before, directly after the four month intervention (post) and after a further four months (follow-up). The primary outcome measures were the Maslach Burnout Inventory-Human Services Survey and the 12-item General Health Questionnaire. Analysis involved repeated measures analyses of variance for each of the outcome measures and adjustment for potential confounders to limit bias. RESULTS The Maslach Burnout Inventory-Human Services Survey results showed that change over time in emotional exhaustion scores differed between the three groups. Post-hoc analyses for each group separately revealed that the only significant time effect was in the dementia care mapping group (p=0.006), with emotional exhaustion scores declining over time. At baseline, more perceived support from management was associated with less emotional exhaustion (r(s)=0.26, p=0.004, n=122) and less depersonalisation (r(s)=0.21, p=0.023, n=122), but not for any of the other outcome measures. CONCLUSIONS This study has shown that person centred approaches of care, in particular with dementia care mapping, may contribute to reducing staff job related burnout. The findings also highlight a potentially important role of managerial support and a whole of system approach.

Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study

BackgroundIn response to the escalating burden of chronic illness in Australia, recent health policies have emphasised the promotion of patient self-management and better preventive care. A notable omission from these policies is the acknowledgment that patients with chronic illness tend to have co-morbid conditions. Our objectives were: to identify the common challenges co-morbidity poses to patients and carers in their experiences of self-management; to detail the views and perceptions of health professionals about these challenges; and to discuss policy options to improve health care for people with co-morbid chronic illness. The method included semi-structured interviews and focus groups with 129 purposively sampled participants. Participants were people with Type 2 diabetes, chronic obstructive pulmonary disease and/or chronic heart failure as well as carers and health care professionals. Content analysis of the interview data was conducted using NVivo7 software.ResultsPatients and their carers found co-morbidity influenced their capacity to manage chronic illness in three ways. First, co-morbidity created barriers to patients acting on risk factors; second, it complicated the process of recognising the early symptoms of deterioration of each condition, and third, it complicated their capacity to manage medication.ConclusionFindings highlight challenges that patients with multiple chronic conditions face in relation to preventive care and self-management. Future clinical policy initiatives need to move away from single illness orientation toward strategies that meet the needs of people with co-morbid conditions and strengthen their capacity to self-manage. These patients will benefit directly from specialised education and services that cater to the needs of people with clusters of co-morbidities.

A patient-centred approach to health service delivery: improving health outcomes for people with chronic illness

BackgroundThe Wagner Model provides a framework that can help to facilitate health system transition towards a chronic care oriented model. Drawing on elements of this framework as well as health policy related to patient centred care, we describe the health needs of patients with chronic illness and compare these with services which should ideally be provided by a patient-centred health system. This paper aims to increase understanding of the challenges faced by chronically ill patients and family carers in relation to their experiences with the health care system and health service providers.MethodWe interviewed patients, carers and health care professionals (HCPs) about the challenges faced by people living with complicated diabetes, chronic heart failure or chronic obstructive pulmonary disease.ResultsPatients indicated that they had a range of concerns related to the quality of health care encounters with health care professionals (HCPs), with these concerns being expressed as needs or wants. These included: 1) the need for improved communication and information delivery on the part of HCPs; 2) well organised health services and reduced waiting times to see HCPs; 3) help with self care; 4) greater recognition among professionals of the need for holistic and continuing care; and 5) inclusion of patients and carers in the decision making processes.ConclusionsIn order to address the challenges faced by people with chronic illness, health policy must be more closely aligned with the identified needs and wants of people affected by chronic illness than is currently the case.

Health professionals, patients and chronic illness policy : a qualitative study

Background and objective  This study investigates health professionals’ reactions to patients’ perceptions of health issues – a little‐researched topic vital to the reform of the care of chronic illness.

Leadership and management in the aged care sector: A narrative synthesis

The aim of this study is to examine the issues and the progress being made in leadership and management with relevance for the residential aged care workforce. A systematic review was conducted using scientific journal databases, hand searching of specialist journals, Google, snowballing and suggestions from experts. After a seven‐tiered culling process, we conducted a detailed review of 153 papers relevant to leadership and management development in aged care. Strong, effective leadership and management promotes staff job satisfaction and retention, high care quality and the well‐being of care recipients, and reduces associated costs. Good leadership and effective management also play a key role in bringing about a successful change to a positive workplace culture through innovative programs and research projects. Organisational investment in improving leadership and management skills and capabilities can only improve outcomes for staff stability and productivity, care quality and budgets, and better prepare the aged care sector.

Implementing Person-Centered Care in Residential Dementia Care

Person-centered care (PCC) for people with dementia is a system of care that is based on the belief that personhood can be maintained despite cognitive impairment. A recently conducted cluster randomized trial (Chenoweth et al., 2009) demonstrated that PCC was effective in reducing agitation in people with dementia who were in residential care. This article provides a detailed overview of the PCC intervention arm of the study and describes the training and procedures used to facilitate implementation of PCC. Training emphasized the impact of the social world on the person with dementia and promoted the skills of interpersonal engagement, especially in relation to feeling expression. Facilitated on-site learning involved care planning that included obtaining a life story of the person with dementia and observing social interactions. The success of the PCC intervention was related to this two-pronged approach, which included support from managers. Implementation of PCC requires a whole-of-system approach, which includes formal and informal learning.

PerCEN: a cluster randomized controlled trial of person-centered residential care and environment for people with dementia

BACKGROUND There is good evidence of the positive effects of person-centered care (PCC) on agitation in dementia. We hypothesized that a person-centered environment (PCE) would achieve similar outcomes by focusing on positive environmental stimuli, and that there would be enhanced outcomes by combining PCC and PCE. METHODS 38 Australian residential aged care homes with scope for improvement in both PCC and PCE were stratified, then randomized to one of four intervention groups: (1) PCC; (2) PCE; (3) PCC +PCE; (4) no intervention. People with dementia, over 60 years of age and consented were eligible. Co-outcomes assessed pre and four months post-intervention and at 8 months follow-up were resident agitation, emotional responses in care, quality of life and depression, and care interaction quality. RESULTS From 38 homes randomized, 601 people with dementia were recruited. At follow-up the mean change for quality of life and agitation was significantly different for PCE (p = 0.02, p = 0.05, respectively) and PCC (p = 0.0003, p = 0.002 respectively), compared with the non-intervention group (p = 0.48, p = 0.93 respectively). Quality of life improved non-significantly for PCC+PCE (p = 0.08), but not for agitation (p = 0.37). Improvements in care interaction quality (p = 0.006) and in emotional responses to care (p = 0.01) in PCC+PCE were not observed in the other groups. Depression scores did not change in any of the groups. Intervention compliance for PCC was 59%, for PCE 54% and for PCC+PCE 66%. CONCLUSION The hypothesis that PCC+PCE would improve quality of life and agitation even further was not supported, even though there were improvements in the quality of care interactions and resident emotional responses to care for some of this group. The Australian New Zealand Clinical Trials Registry Number is ACTRN 12608000095369.

Multimorbidity is associated with higher out-of-pocket spending: a study of older Australians with multiple chronic conditions

Most older Australians have at least one chronic health condition. The management of chronic disease is associated with potentially severe economic consequences for patients and their households, partially due to the financial burden associated with out-of-pocket costs for medical and health-related care. A questionnaire was mailed to a cross-sectional sample of older Australians in mid-2009, with 4574 responding. Multivariate logistic regression models were developed to investigate the relationships between multimorbidity and out-of-pocket spending on medical and health-related expenses, including the factors associated with severe financial stress among older Australians. We found a positive relationship between number of chronic conditions and out-of-pocket spending on health and that people with multiple chronic conditions tend to be on lower incomes. People with five or more chronic conditions spent on average five times as much on their health as those with no diagnosed chronic conditions and each additional chronic disease added 46% to the likelihood of a person facing a severe financial burden due to health costs.

Recommended Measures for the Assessment of Behavioral Disturbances Associated With Dementia

OBJECTIVE The study reviewed all the published instruments used for the assessment, diagnosis, screening, and outcomes monitoring/evaluation of behavioral disturbances associated with dementia (BDAD) to recommend a set of psychometrically valid measures for clinicians and researchers to use, across a range of different practice settings. METHODS The study involved a broad scoping search, followed by a series of in-depth literature reviews on 29 instruments using scientific literature databases (MEDLINE, PsycINFO, CINAHL, and the Cochrane Library) and various national, international government, and government agency websites and professional organization websites. External consultations from measurement, clinical and research experts in dementia care, consumer representatives, and policy/decision makers, were sought in selecting the best instruments and in making the final recommendations. FINDINGS Key attributes and psychometric properties of a short list of five instruments were measured against prespecified criteria. The Neuropsychiatry Inventory (NPI) and the Behavioral Pathology in Alzheimers Disease Rating Scale (BEHAVE-AD) were rated as the best measures for assessment of behavioral disturbances, followed by the Consortium to Establish a Registry for Alzheimers Disease-Behavior Rating Scale for Dementia (CERAD-BRSD), the Dementia Behavior Disturbance Scale, and the Neurobehavioral Rating Scale. CONCLUSION The use of valid and standardized outcome measures for the assessment of BDAD is critical for epidemiological studies, prevention, early intervention and treatment of dementia conditions, and funding for relevant healthcare services. The review recommends the NPI and BEHAVE-AD as the most appropriate measures for both clinical and research, whereas the CERAD-BRSD is suited better for research. The review was designed for the Australian context; however, the findings are applicable in other developed countries.