Public participation in the evaluation of health care

Of the many concepts and issues that have dominated debates in western health care systems in the last 20 or so years few can have had as much currency as that of “patient satisfaction”. The word “patient” is loaded and often deliberately substituted so that reference is made to the satisfaction of the “user”, “consumer”, “community”, “public” or “lay person”. All versions draw attention to a universal concern that modern health care is inherently prone to failure to meet the wants, needs, demands and expectations of the recipients of health care. “Patient satisfaction” as a policy issue is invariably viewed as a problem in need of urgent solutions. For some analysts it is the most urgent of all problems for health care systems the primary purpose of which is to satisfy users and potential users of health care.     

From consumerism to partnership? Britain's National Health Service at the turn of the century.

It has been argued that "consumerism" has been one of the main influences on health policy in many countries over the last decade or so. This article focuses on the role of consumerism in U.K. health policy during this period through the introduction of changes in National Health Service provision such as introduction of the quasi-market, creation of the new managerialism, and new organizational structures set up under the recent Labour government. It considers the consequences of these changes for the users of health care and for citizenship rights, in particular the extent to which the changes have empowered these users and citizens.     

Questioning “choice”: A multinational metasynthesis of research on directly funded home‐care programs for older people

In many developed contexts, home‐care services have been overhauled with the intent of increasing control and flexibility for those using social and health services. This change is associated with providing funds directly to individuals, and sometimes their families and supports, to arrange at home‐care assistance with the activities of daily living. Directly funded home‐care programs, or “direct funding” (DF), are not value‐neutral policy interventions, but complex and politicised tools for the enactment of care in contemporary times. In this qualitative metasynthesis, we consider 47 research articles published between 2009 and 2017 that explore various DF programs for older persons in the United Kingdom, Australia, and the United States to identify core concepts in the literature. We find that choice emerges as a central concern. We then assess the literature to explore the questions: How does the existing literature conceptualise choice, and the mechanisms through which choice is enhanced, in DF programs for older persons? How is choice, and the benefit of choice to older service users, understood in relevant studies? We argue that the concept of “choice” manifests as a normative goal with presumed benefits among the studies reviewed. Particularly when discussing DF for older people, however, it is essential to consider which mechanisms improve care outcomes, rather than focusing on which mechanisms increase choice writ large. In the case of DF, increased choice comes with increased legal responsibilities and often administrative tasks that many older people and their supports find burdensome. Furthermore, there is no evidence that choice over all elements of one's services is the mechanism that improves care experiences. We conclude by presenting alternative models of understanding care emerging from feminist and other critical scholarship to consider if we are, perhaps, asking the wrong questions about why DF is so often preferred over conventional home‐care delivery.     

Transnational Older Adults and Their Families*

Abstract: This qualitative study explores the international migration patterns and the family lives of older adults. Informants (N = 54) reported that they came to the United States to help out their grown children with housekeeping, child care, and domestic economizing. They described how they strategically navigated U.S. immigration laws choosing to visit, immigrate, or naturalize in order to balance their ties to the United States and their homeland. Their transnational loyalties sometimes led to lives that did not strictly match their visa categories. There were “permanent” temporary visitors, U.S. permanent residents who maintained a “permanent” home elsewhere, and U.S. citizens who had naturalized in order to spend more time abroad. Implications of the findings for immigration policy and family practice are discussed.     

“Other” Troubles: Deconstructing Perceptions and Changing Responses to Refugees in Canada

Canadian national identity is based on a self-image of humanitarianism and liberality governed by ethical and moral principles of social justice, universal health care and equity for all. However, recent changes to the Interim Federal Health Program (IFHP) demonstrate that the current discourse on refugee policy in Canada is built on a socially constructed image of “the refugee.” Drawing on contemporary refugee literature we look at how refugees are constructed as the ‘Other,’ both nationally and internationally. Using the recent changes to the IFHP as a case example, we demonstrate that the construction of “the refugee” as an Other has informed the cuts to refugee care in Canada. Exposing Othering in Canadian refugee policy is necessary for providing helpful and equitable treatment to refugees in Canada     

Developing and utilising a new funding model for home‐care services in New Zealand

Worldwide increases in the numbers of older people alongside an accompanying international policy incentive to support ageing‐in‐place have focussed the importance of home‐care services as an alternative to institutionalisation. Despite this, funding models that facilitate a responsive, flexible approach are lacking. Casemix provides one solution, but the transition from the well‐established hospital system to community has been problematic. This research seeks to develop a Casemix funding solution for home‐care services through meaningful client profile groups and supporting pathways. Unique assessments from 3,135 older people were collected from two health board regions in 2012. Of these, 1,009 arose from older people with non‐complex needs using the interRAI‐Contact Assessment (CA) and 2,126 from the interRAI‐Home‐Care (HC) from older people with complex needs. Home‐care service hours were collected for 3 months following each assessment and the mean weekly hours were calculated. Data were analysed using a decision tree analysis, whereby mean hours of weekly home‐care was the dependent variable with responses from the assessment tools, the independent variables. A total of three main groups were developed from the interRAI‐CA, each one further classified into “stable” or “flexible.” The classification explained 16% of formal home‐care service hour variability. Analysis of the interRAI‐HC generated 33 clusters, organised through eight disability “sub” groups and five “lead” groups. The groupings explained 24% of formal home‐care services hour variance. Adopting a Casemix system within home‐care services can facilitate a more appropriate response to the changing needs of older people.     

Reconciling conceptualisations of the body and person‐centred care of the older person with cognitive impairment in the acute care setting

In this article, we sought reconciliation between the “body‐as‐representation” and the “body‐as‐experience,” that is, how the body is represented in discourse and how the body of older people with cognitive impairment is experienced. We identified four contemporary “technologies” and gave examples of these to show how they influence how older people with cognitive impairment are often represented in acute care settings. We argued that these technologies may be mediated further by discourses of ageism and ableism which can potentiate either the repressive or productive tendencies of these technologies resulting in either positive or negative care experiences for the older person and/or their carer, including nurses. We then provided examples from research of embodied experiences of older people with dementia and of how nurses and other professionals utilized their inter‐bodily experiences to inform acts of caring. The specificity and individuality of these experiences were more conducive to positive care experiences. We conclude the article by proposing that the act of caring is one way nurses seek to reconcile the “body‐as‐representation” with the “body‐as‐experience” to mitigate the repressive effects of negative ageism and ableism. The act of caring, we argue, is the essence of caring enacted through the provision of person‐centred care which evokes nurses to respond appropriately to the older person's “otherness,” their “variation of being” while enabling them to enact a continuation of themselves and their own version of normality.     

Listening to Chinese Immigrant Restaurant Workers in the Midwest: Application of the Culture-Centered Approach (CCA) to Explore Perceptions of Health and Health Care

This study engages with the culture-centered approach (CCA) to explore Chinese immigrant restaurant workers’ perception of the U.S. health care system and their interactions with the health care system in interpreting meanings of health. Chinese restaurant workers are marginalized because of their struggles on the job, their immigrant identity, and their negotiations with the structural contexts of occupation, migration status, and culture. In-depth interviews were conducted with 18 Chinese immigrant restaurant workers that lasted an average of 1.5 hours each, and were audiotaped. Interviews with participants highlighted critical issues in access to health care and the struggles experienced by restaurant workers in securing access to health, understood in the context of work. Critical to the workers’ discourse is the acknowledgment of structural constraints such as lack of insurance coverage, immigration status, and lack of understanding of how the U.S. health care system works.     

Governing the ethical consumer: identity, choice and the primary care medical encounter

Government policy promoting consumerism in healthcare can be seen as offering up certain preferred identities to which its citizens are encouraged to aspire. Whilst many commentators reject the notion that health services users should be conceived of as consumers, this paper outlines the relevance of the concept to our understanding of the ways in which individuals manage their health and service use. The paper examines the identity work undertaken by individuals in relation to decisions about healthcare preferences and assesses the extent to which this is compatible with the identities promoted in Government policy. We suggest that in circumstances where individuals feel both a sense of personal entitlement and a desire to be supportive of the needs of other members of the community, 'doing' ethical consumer can be fraught with discomfort and anxiety. These anxieties are exacerbated in a context where citizenship is increasingly being defined in terms of consumer identities, and making good (health) choices might be seen as distinguishing the civilised from the marginalised.     

Federal Practice Guidelines for Consumers and Patients http://www.ahrq.gov/consumer

Abstract

The Agency for Healthcare Research and Quality (AHRQ) is a federal agency that produces “Clinical Practice Guidelines” for health care professionals. The “consumer” version of their Web site provides information on prevention and advice on obtaining the best quality health care.     

“The citizen is stepping into a new role”—Policy interpretations of patient and public involvement in Finland

Involving patients and the public in healthcare decision‐making is on the policy agenda in several countries. The aim of our study was to describe and analyse the development of patient and public involvement from a policy perspective. We argue that the language of health policies can influence both the aims and the development of involvement methods. In this study health policy documents, which have guided the development of patient and public involvement in Finland have been analysed using methods of Membership Categorisation Analysis. This has enabled us to explore how health policy documents categorise patients and the wider public in relation to involvement and orientate the involvement activities in which people are able to participate. Different set of abilities, expectations, responsibilities and opportunities is attached to the categories of patient, risk group, service user, customer and expert. Health policy documents often equate involvement with choice making by service users and customers; or as involvement in service development by experts. In both of these cases, involvement is depicted as an individual activity that requires personal responsibility and specialist knowledge. Although involvement opportunities have overall increased, they are primarily available to people that are “participation ready” and able to adopt roles promoted in policies. Health policy documents produce one interpretation of involvement, nevertheless it is important that diverse groups of patients, the public and health professionals participate in the discussion and express their views, which may differ from those of policy makers.     

The burden of proof: The process of involving young people in research

Patient and public involvement in research includes non‐academics working with researchers, on activities from consultative tasks, to joint working, and on user‐led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical “proof” to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large‐scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants’ perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of “the art of the possible,” and centrally, opportunities for face‐to‐face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow “prove” themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.     

Robert Nozick and Axel Honneth: An attempt to shed light on mental health service in Norway through two diametrical philosophers

This article aims at giving insight into Norwegian mental health service by exploring the ideologies of two diametrical philosophers, the American Robert Nozick (1938–2002) and the German Axel Honneth (1949‐). Nozick proposes as an ideal a minimal state in which citizens have a “negative right” to the absence of interference and to follow their own interests without restriction from the state. On the other side, Axel Honneth claims that there is no freedom without state interference. In his view, governmental involvement is understood as a prerequisite for personal freedom. We may call this state an opposite of the minimal state; a maximal state. To get a better understanding of these opposite philosophies, we use texts written from conversations with people suffering from mental health problems, nurses and other caregivers in four Norwegian municipalities. Nozick's notion of the minimal state and Honneth's political philosophy of freedom and recognition were used as analytical tools. Among patients and helpers, there were different opinions about good care and how much caregivers should intervene. Some emphasized autonomy, independency, minimal involvement in human contact by nurses and other caregivers, similar a minimal state. Others perceived good care as bonding between helpers and service‐users. They underlined equal and personal relationships, as well as helping with practicalities, similar a maximal state. In the discussion, we focus on how people with chronic illnesses are supposed to transform themselves into self‐cared individuals, able to manage their own condition successfully with minimal help from public welfare and at a lower cost. Finally, we express concerns about who will care for disempowered patients without family and other resources in a minimal state.     

“Keeping Control”: A user‐led exploratory study of mental health service user experiences of targeted violence and abuse in the context of adult safeguarding in England

The situation for people with mental health problems as a group of disabled people who experience targeted violence and abuse is a complex one. Disabled people, particularly those with mental health problems, are at higher risk of targeted violence and hostility with few effective evidence‐based prevention and protection strategies. Achieving effective safeguarding for adults with mental health problems is characterised by differential attitudes to and understandings of abuse by safeguarding practitioners, as well as systemic issues arising from multi‐agency working. “Keeping Control” was a 16‐month user‐led, co‐produced exploratory qualitative study into service user experiences of targeted violence and abuse that was examined in the context of Care Act 2014 adult safeguarding reforms in England. User‐controlled interviews of mental health service users (N = 23) explored their experiences and concepts of targeted violence and abuse, prevention and protection. Preliminary findings from these interviews were discussed in adult safeguarding and mental health stakeholder and practitioner focus groups (N = 46). The data were also discussed via two facilitated Twitter chats (responses N = 585 and N = 139). Mental health service users’ experiences and concepts of risk from others, vulnerability and neglect can be different to those of practitioners but should be central to adult safeguarding. Histories of trauma, multi‐factorial abuse; living with fear and stigma as well as mental distress; the effects of “psychiatric disqualification” and individual blaming should be addressed in adult safeguarding in mental health. Fragmented responses from services can mean a person becomes “lost in the process”. Staff can feel disempowered, afraid or lacking in confidence to “speak up” for individuals in complex service systems with poor communication and lines of accountability. Adult safeguarding practitioners and stakeholders need to be confident, accessible and respond quickly to service users reporting incidents of targeted violence and abuse particularly in closed environments such as wards or supported housing.     

LGBT Identity and Its Influence on Perceived Effectiveness of Advertisements from a LGBT Tobacco Public Education Campaign

Lesbian, gay, bisexual, and transgender (LGBT) individuals are at increased risk for tobacco use compared to those who are not LGBT. The Food and Drug Administration’s Center for Tobacco Products launched the first U.S. large-scale tobacco public education campaign for LGBT young adults aged 18–24, This Free Life. The current study, using data from the evaluation of the This Free Life campaign, investigated the role of LGBT Identity Affirmation (i.e., the development of positive feelings or attachment to being LGBT), LGBT Identity Centrality (i.e., the degree to which an aspect of a person’s identity shapes their overall identity), and Identification with the LGBT Community (i.e., an individual’s relationship with the LGBT community) on perceived effectiveness of four This Free Life advertisements. The current study sample included 2,788 LGBT young adults. For the “Our Story” and “Flawless” advertisements, all three identity constructs were statistically significant positive predictors of perceived advertisement effectiveness. For female-centric and male-centric “Tip the Scale” advertisements, LGBT Identity Centrality and Identification with the LGBT Community were significant positive predictors. An additional secondary analysis found differences in identity constructs between sexual and gender minority subgroups. These results support that identity constructs may be leveraged in health interventions.     

Out-of-pocket payments for health care in Serbia

BackgroundThis study focuses on out-of-pocket payments for health care in Serbia. In contrast to previous studies, we distinguish three types of out-of-pocket patient payments: official co-payments, informal (under-the-table) payments and payments for “bought and brought goods” (i.e. payments for health care goods brought by the patient to the health care facility).MethodsWe analyse the probability and intensity of three different types of out-of-pocket patient payments in the public health care sector in Serbia and their distribution among different population groups. We use data from the Serbian Living Standard Measures Study carried out in 2007. Out-of-pocket patients payments for both outpatient and inpatient health care are included. The data are analysed using regression analysis.ResultsThe majority of health care users report official co-payments (84.7%) and payments for “bought and brought goods” (61.1%), whereas only 5.7% health care users declare that they have paid informally. Regarding the regression results, users with an income below the poverty line, those from rural areas and who are not married are more likely to report payments for “bought and brought goods, while young and more educated users are more likely to report informal patient payments.ConclusionOverall, the three types of out-of-pocket payments are not correlated. Payments for “bought and brought goods” take the highest share of the total annual household budget. Serbian policymakers need to consider different strategies to deal with informal payments and to eliminate the practice of “bought and brought goods”.     

Review of PubMed Health

PubMed Health is a curated resource designed by the National Center for Biotechnology Information (NCBI) to help both researchers and lay people answer the question, “What works?” in health care. Through content provided by NCBI and numerous partner organizations (such as Cochrane Collaboration), including plain language systematic reviews as well as educational resources for those unfamiliar with evidence-based practice, consumers can understand the research behind their health care options for specific health issues. Although the reading level of some content can be challenging, PubMed Health provides easily accessible help for consumers confused by certain terms and practices described in the reviews. PubMed Health should be included in every consumer health librarian’s toolkit for users seeking to understand medical research and evidence-based health care.     

On Reducing Information Asymmetry in U.S. Health Care

Information asymmetry is a significant issue facing the U.S. health care system. In this article, we investigate some methods of reducing this asymmetry. We trace the information asymmetry using the “wicked problem” of the health care distribution system. An information asymmetry reduction method requiring joint responsibilities among health care stakeholders is developed. It is argued that information asymmetry is a contributor to enormous health care inflation. Hence, any reduction in such asymmetry will reduce health care costs. Concepts from both signaling and corrective justice theories are integrated in this article to help reduce the information asymmetry that exists in the U.S. health care system. Getting health care costs in line with other “advanced” nations, is the long-term solution to the wicked problem that currently exists in the U.S. health care system. There is an immediate need for a centralized health care database with adequate provisions for individual privacy. Both processes as well as an outcome-based control system are essential for reducing information asymmetries in the U.S. health care system.     

La identidad de género,factor de desigualdad olvidado en los sistemas de información de salud de España

The Spanish Health Information System (HIS) collects health information. Trans people have poorer health status. This paper aimed to assess the adequacy of the HIS to collect the health data on trans individuals. The HIS sources available in the Statistical Portal of the National Health System were reviewed. The sources containing population health data were selected. The variables “sex” and “gender identity” were searched. Nineteen sources were identified. In all of them the variable “sex” was found, whereas “gender identify” did not appear in any of the 19. In two sources, the variable “sex” allowed values of “transsexual”. The SIS contains little information regarding gender identity. This leads to the invisibility of trans people in Spanish health statistics. Obtaining this information would allow for a better understanding of the barriers to health care access, and the health needs of one of the most discriminated groups in our society.     

Cultural Dilemmas of Choice: Deconstructing Consumer Choice in Health Communication Between Maternity-Care Providers and Ethnic Chinese Mothers in New Zealand

This article critically analyses the discourse of consumer choice embedded in health communication interactions between maternity-care providers and migrant ethnic Chinese mothers in New Zealand. Findings indicate that Chinese mothers, as the customers of the New Zealand maternity and health care services, are encouraged to “fit in” with the Western discourse of choice. However, the mothers’ cultural predispositions for childbirth and communication have a significant impact on the ways in which they respond to and resist this discourse. Drawing on theoretical insights from postcolonialism and Third World feminism, this article contributes to the study of intercultural health communication by examining cultural dilemmas in the discourse of choice that is often taken for granted in Western health contexts. In doing so, it builds a platform for an inclusive maternity care and health environment in multicultural societies.