Perspectives from practice: complexities of personal care workers.

Personal care workers (PCWs) make up the bulk of the workforce in residential and community care services. The knowledge and skill set needed for safe and effective practice in care settings is extensive. A diverse range of registered training organisations (RTOs) offering Certificate III and IV in Individual Support (aging, home and community) are tasked with producing job-ready PCWs. However, the curricula of these programs vary. Additionally, a national code of conduct for healthcare workers became effective in October 2015 as a governance framework for PCWs. The language of the code statements is ambiguous making it unclear how this framework should be translated by RTOs and applied in the preservice practice preparation of PCWs. Employers of PCWs need to feel confident that the content of the preservice education of PCWs satisfactorily prepares them for the diverse contexts of their practice. Likewise, the health professionals who supervise PCWs must be assured about the knowledge and skills of the PCW if they are to safely delegate care activities. The perspectives presented in this discussion make it clear that investigation into the nebulous nature of PCW education, regulation and practice is needed to identify the shortcomings and enable improved practice.

Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider.

As clinical genetics evolves, and we embark down the path toward more personalized and effective health care, the amount, detail, and complexity of genetic/genomic test information within the electronic health record will increase. This information should be appropriately protected to secure the trust of patients and to support interoperable electronic health information exchange. This article discusses characteristics of genetic/genomic test information, including predictive capability, immutability, and uniqueness, which should be considered when developing policies about information protection. Issues related to "genetic exceptionalism"; i.e., whether genetic/genomic test information should be treated differently from other medical information for purposes of data access and permissible use, are also considered. These discussions can help guide policy that will facilitate the biological and clinical resource development to support the introduction of this information into health care.

Advancing personalized health care through health information technology: an update from the American Health Information Community's Personalized Health Care Workgroup.

The Personalized Health Care Workgroup of the American Health Information Community was formed to determine what is needed to promote standard reporting and incorporation of medical genetic/genomic tests and family health history data in electronic health records. The Workgroup has examined and clarified a range of issues related to this information, including interoperability standards and requirements for confidentiality, privacy, and security, in the course of developing recommendations to facilitate its capture, storage, transmission, and use in clinical decision support. The Workgroup is one of several appointed by the American Health Information Community to study high-priority issues related to the implementation of interoperable electronic health records in the United States. It is also a component of the U.S. Department of Health and Human Services' Personalized Health Care Initiative, which is designed to create a foundation upon which information technology that supports personalized, predictive, and pre-emptive health care can be built.

Fixing the system? The experience of service users of the quasi-market in disability services in Australia.

A qualitative study involving semi-structured interviews with 31 people with disabilities and 32 carers in the state of Queensland, Australia, found that their experience of supportive service delivery had not improved despite reforms of the service delivery system driven by a version of the quasi-market model. Instead of delivering increased consumer choice and improved efficiency in service delivery, service users experienced inadequate service supply, service cutbacks, and an increased emphasis on cost subsidisation and assessment processes. Additionally, few consumers felt that individualised funding arrangements had personally delivered the benefits which the quasi-market model and associated policy paradigm had indicated that they should receive. For many consumers, the notion of consumer 'choice' around service provision was fictitious and they felt that any efficiency gains were at the agency level, largely at the consumers' cost. It is concluded that there appears to be no particular benefit to service users of quasi-market reforms, particularly in policy contexts where service delivery systems are historically under-funded.

Living with motor neurone disease: lives, experiences of services and suggestions for change.

Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experiences of people living with MND? (2) What are people's experiences of services? and (3) Can improvements to care be identified? A qualitative research design was adopted using semi-structured interviews. The topic guide was developed from existing literature. The study was based in three boroughs in London, UK. People living with MND and professionals were drawn from a database at King's College Hospital, and additionally, through 'snowball' sampling. Nine people with MND, five carers/family members and 15 professionals took part in the interviews. These interviews were audio-taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. The analysis was facilitated with the NVIVO computer software package. The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals' attitudes and approaches, and professionals' knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. The paper concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.

Improving the quality of Medicaid personal assistance through consumer direction.

As states seek to improve home and community-based services for people with disabilities, many are incorporating consumer-directed supportive services into their Medicaid programs. The national Cash and Counseling Demonstration uses a randomized design to compare an innovative model of consumer direction with the traditional agency-directed approach. This paper presents findings from the first demonstration program to be implemented, in Arkansas. Our survey of 1,739 elderly and nonelderly adults showed that relative to agency-directed services, Cash and Counseling greatly improved satisfaction and reduced most unmet needs. Moreover, contrary to some concerns, it did not adversely affect participants' health and safety.

Measuring quality of care in physicians' offices.

Quality ultimately is not solely the province of the physician. The chain of responsibility to prevent and treat disease is complex. It involves not only physicians and patients but also the payors of health care who are demanding more involvement in health care decision making. Payors want understandable information upon which to base their decisions. They are acquiring the means and the resolve to direct their patients to those who will effectively report such information and away from those who will not. Accordingly, physicians should be able to explain their quality assurance methods and be willing to demonstrate and document quality of care in their offices.

Patient satisfaction with care is associated with personal choice of physician.

OBJECTIVE: To evaluate whether choosing one's own primary care doctor is associated with patient satisfaction with primary health care. To evaluate factors related to population's satisfaction with primary health care. POPULATION: A random sample of Estonian adult population (N=997). STUDY DESIGN: Cross-sectional study using a pre-categorized questionnaire which was compiled by the research group of the University of Tartu and the research provider EMOR. RESULTS: Altogether 68% of the respondents had been listed in their personal physician. Their overall satisfaction with the physician as well as satisfaction with several aspects of primary health care were significantly higher compared with those of unregistered respondents. Although some other factors (practice size, patient age, health status) also influenced patient satisfaction, presence of a personal physician appeared the most important predictor of high satisfaction with physician's punctuality and understanding, effectiveness of prescribed therapy, clarity of explanations given by the physician as well as with overall satisfaction with the physician. CONCLUSION: Personal doctor system is associated with patient satisfaction with different aspects of care.

Informal care: the views of people receiving care.

Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers.

Person-centred care for people with dementia: a quality audit approach.

This paper addresses the concept of person-centred care for people with dementia by consideration of an audit process using dementia care mapping as the audit tool. It is argued that this tool is best for identifying the lived experiences of the people in receipt of care. As a result it is able to identify the overall culture of care and its level of 'person-centred' approach. The audit was conducted on 12 units, half of which were day units and the others catering for inpatients. Five patients were mapped on each day for a 4-day period. The results give some idea of the quality of care and identify where improvement is necessary. Scores such as well-being values and the Dementia Care Index give clear signposts to the level of person-centred care and highlight where staff development is necessary. Recommendations are given to aid on-going planning.

[Personalization concepts of medical ethics in the teachings of John Paul II]. / Personalistyczna koncepcja etyki lekarskiej w nauczaniu Jana Pawla II.

According to John Paul's teaching, the medicine cannot be purely technological, but needs to have some human character. The medicine doctors should consider patients as a whole, not only their problems bound with the treating them as patients, and to cure them from their illnesses, but together considering their feelings, and their intellectual and spiritual life. John Paul's teaching in relation to "the personalizing of medicine" means such a consideration of the human being that is leading to the respect about the body, spirit and their culture. Therefore the knowledge about the biological properties of human life, should be accompanied together with the look onto their dignity. Nobody could be a doctor who cures only one organ of the human's body, but must see the whole human person together with the relations to other persons connected with that patient, because they have very often much of influence on to the health of a patient. That "personalizing of the medicine" should be done on such a way, when it is seen the total ill person. The doctor should be having friendly and even heartily personal relationship to the patient, which should lead to a dialog between them, full of respect and confidence. Nobody is allowed to consider an ill person as a clinical case, but should see a person who is expecting not only professional, competent medical attention, but also the understanding of the patient's spirit, which is being bound with that illness. In this way, John Paul II is telling us, that the health service should not be based entirely on the professional knowledge and skill. The doctor should see in the ill person his own dearest brother or sister, whom we are to love very much, and should be taking part in the illnesses of them.

Waiting times for diagnosis and treatment of head and neck cancer in Denmark in 2010 compared to 1992 and 2002.

BACKGROUND AND AIM: Significant tumour progression was observed during waiting time for treatment of head and neck cancer. To reduce waiting times, a Danish national policy of fast track accelerated clinical pathways was introduced in 2007. This study describes changes in waiting time and the potential influence of fast track by comparing waiting times in 2010 to 2002 and 1992. METHODS: Charts of all new patients diagnosed with squamous cell carcinoma of the oral cavity, pharynx and larynx at the five Danish head and neck oncology centres from January to April 2010 (n=253) were reviewed and compared to similar data from 2002 (n=211) and 1992 (n=168). RESULTS: The median time to diagnosis was 13 days (2010) versus 17 days (2002; p<0.001) and 20 days (1992; p<0.001). Median days from diagnosis to treatment start were 25 (2010) versus 47 (2002; p<0.001) and 31 (1992; p<0.001). Total pre-treatment time was median 41 days in 2010 versus 69 days (2002) (p<0.001) and 50 days (1992; p<0.001). Significantly more diagnostic imaging was done in 2010 compared to 2002 and 1992. When compared to current fast track standards the adherence to diagnosis improved slightly from 47% (1992) to 51% (2002) and 64% (2010); waiting time for radiotherapy was within standards for 7%, 1% and 22% of cases, respectively; waiting time for surgery was within standards for 17%, 22% and 48%, respectively. CONCLUSION: The study showed a significant reduction in delay of diagnosis and treatment of head and neck cancer in 2010, but still less than half of all patients start treatment within the current standards.

The relationship between formal and informal care among adult Medicaid Personal Care Services recipients.

OBJECTIVES: To test hypotheses concerning the relationship between formal and informal care and to estimate the impact of hours of formal care authorized for Medicaid Personal Care Services (PCS) on the utilization of informal care. DATA SOURCES/STUDY SETTING: Data included home care use and adult Medicaid beneficiary characteristics from assessments of PCS need in four Medicaid administrative areas in Texas. STUDY DESIGN: Cross-sectional design using ordinary least-squares (OLS) and instrumental variable (IV) methods. DATA COLLECTION/EXTRACTION METHODS: The study database consisted of assessment data on 471 adults receiving Medicaid PCS from 2004 to 2006. PRINCIPAL FINDINGS: Both OLS and IV estimates of the impact of formal care on informal care indicated no statistically significant relationship. The impact of formal care authorized on informal care utilization was less important than the influence of beneficiary need and caregiver availability. Living with a potential informal caregiver dramatically increased the hours of informal care utilized by Medicaid PCS beneficiaries. CONCLUSIONS: More formal home care hours were not associated with fewer informal home care hours. These results imply that policies that decrease the availability of formal home care for Medicaid PCS beneficiaries will not be offset by an increase in the provision of informal care and may result in unmet care needs.