Chronic illness, expert patients and care transition

During the last century demographic and epidemiological transitions have had a radical impact upon health and health service provision. A considerable body of research on the sociological aspects of living with chronic illness has accumulated. Debate has focused on how social environments shape disability-related experiences, and the extent to which individual responses define health outcomes. Through the establishment of the Expert Patients Programme (EPP) in 2001, the Department of Health has sought to enhance NHS patients' self-management capacities. This paper discusses three areas relevant to this: the policy formation process leading up to the EPP's present stage of development; the evidence base supporting claims made for its effectiveness; and the significance of psychological concepts such as self-efficacy in approaches to improving public health. The conclusion discusses NHS developments in primary care and public involvement in health and healthcare, and the implications that initiatives such as the EPP carry for the future. It is argued that to facilitate a constructive process of 'care transition' in response to epidemiological and allied change, awareness of cognitive/psychological factors involved in illness behaviours should not draw attention away from the social determinants and contexts of health.     

Planning for end of life care within lay-led chronic illness self-management training: the significance of 'death awareness' and biographical context in participant accounts

UK health policy dictates that Advance Care Planning (ACP), including the use of living wills, promotes choice and quality regarding end of life care for those with chronic and life-threatening conditions and it has been incorporated in self-management training. This paper reports a qualitative evaluation based on in-depth interviews with 31 respondents who had completed a UK-based lay-led self-management course (The Expert Patients Programme), and 12 respondents who had completed the same course adapted for people who are HIV positive. We draw upon previous social research on 'death awareness' and the biographical context of illness experience and management in examining the impact of incorporating this subject within a self-management intervention. The analysis demonstrates that many participants were unprepared to face issues raised in the session with material represented as disrupting some aspects of illness adaptation and existing views about death and dying. Positioning educational material on death and dying alongside that on 'positive' self-management of illness highlights the complexities and sensitivities of planning for end of life care with implications for future educational interventions of this type.     

Patient empowerment,an additional characteristic of the European definitions of general practice/family medicine

Abstract

Growing evidence supports the inclusion of patient empowerment as a key ingredient of care for patients with chronic conditions. In recent years, several studies based on patient empowerment, have been carried out in different European countries in the context of general practice and primary care to improve management of chronic diseases. These studies have shown good results of the care model, increasing patient and health professionals’ satisfaction, adherence to guidelines and to treatment, and improving clinical outcomes. In 2011, the Wonca European Council included as the twelfth characteristic of the European definitions of general practice/family medicine: ‘promote patient empowerment’. The aim of this paper is to clarify the meaning of 'patient empowerment’ and to explain why family medicine should be considered the most suitable setting to promote it. The inclusion of patient empowerment as one of the essential characteristics of general practice fills a conceptual gap and clearly suggests to the European health care systems a tested model to face chronic diseases: involving and empowering patients in managing their own conditions to improve health and well-being.     

健康赋权在养老机构老年人创伤后成长和慢性病自我管理的中介作用

目的 了解养老机构老年人慢性病自我管理现状,探讨健康赋权在养老机构老年人创伤后成长和慢性病自我管理的中介作用。方法 采用随机数字表法和整群抽样法,应用一般资料调查表、慢性病自我管理量表、创伤后成长量表、老年人健康赋权量表对203名养老机构老年人进行问卷调查。采用独立样本t检验、单因素方差分析和Pearson相关分析对养老机构老年人健康赋权、创伤后成长和慢性病自我管理的影响因素进行分析,应用Bootstrap法检验健康赋权在创伤后成长与慢性病自我管理之间的中介作用。结果 老年人慢性病自我管理总分为（27.96±9.24）分,与创伤后成长和健康赋权均呈正相关（r = 0.547、0.540,P＜0.001）。创伤后成长（t = 6.117,P＜0.001）、健康赋权（t = 5.321,P＜0.001）、每天用药次数（t = 2.420,P = 0.016）是自我管理的独立影响因素,可解释总变异的40.4%。健康赋权在创伤后成长与自我管理之间存在部分中介作用,占总效应的28.32%。结论 养老机构老年人慢性病自我管理处于中等偏下水平,机构管理者和照顾者应重视健康赋权对自我管理的中介效应,提升老年人慢性病自我管理水平。     

The perspective of patients on their experience of powerlessness

Although self-determination is a key issue in empowerment, the perspective of patients on their experience of empowerment has been poorly investigated. The authors have attempted to understand better what the process of empowerment means to patients by investigating the situations and feelings of powerlessness from which a process of empowerment might evolve. They conducted 40 interviews of patients with various chronic conditions and looked for the commonalities in their experiences of powerlessness. Their findings show that powerlessness extends well beyond strictly medical and treatment-related issues, as the study participants all expressed or demonstrated to have at some point or another experienced a distressing feeling of insecurity and a threat to their social and personal identities. The authors therefore suggest that an empowering provider-patient interaction should address these issues by providing for reassurance and opportunities for self-exploration as a prerequisite to participation and self-determination in treatment-related decisions.     

Participation, roles, and the dynamics of change in a group-delivered self-management course for people living with HIV

Interventions designed to change behavior delivered to groups rather than individuals are popular in health promotion and self-management. The 7-week positive self-management program (PSMP) for people with HIV status is adapted from a psychoeducational program designed to increase people's capacity to manage their conditions by enhancing self-efficacy. A case study using mixed qualitative methodology included pre- and postcourse interviews with 14 participants plus participant observation and focused on changes in attitude toward self-management responsibility. The authors identified a precourse typology of motivations and expectations: Hopeless, Recovery phase, or Questioning phase. Participants adopted roles (information seekers or information givers) related to these types. Some expectations and problems were not dealt with because the PSMP's philosophical grounding prioritized improvement of self-efficacy, precluding engagement with material and social needs. Collective user-defined need and support from host organizations might be more important in improving self-management than the structured content of chronic disease self-management programs.     

The expert patient: Valid recognition or false hope?

The United Kingdom Department of Health initiative on "The Expert Patient" (2001) reflects recent trends in political philosophy, ethics and health services research. The overall objective of the initiative is to encourage patients, particularly those suffering from chronic conditions to become more actively involved in decisions concerning their treatment. In doing so there would be (perhaps) an expectation of better patient compliance and (arguably) a resultant improvement in quality of life. Despite these anticipated beneficial influences on health outcomes, there may be a danger that such initiatives are being carried along by the general swell of enthusiasm for recognising and facilitating the claims of disadvantaged or discriminated against groups. What more attractive than that patients should be "liberated" from what might be seen as the oppression of medical paternalism? To a great extent the potential for success of the Expert Patient venture turns on:(a) whether and to what extent a patient can be considered truly to be an expert and (b) full acceptance by the medical and heath care professions of allowing patients a more equitable and positive role. Whilst clearly the patient is an expert in the hermeneutic sense - it is they and they alone who experience their illness - there is nevertheless a risk of confusing experience with expertise. Experience limited to an individual does not of itself give rise to the generalisations that underlie reliable clinical treatment. Neither do the vast majority of patients possess the physiological and pharmacological knowledge to fully appreciate the biological nature of their illness nor the basis, risks or limitations of therapeutic measures. Might the notion of "The Expert Patient" as informed co-decision maker become a well-meaning but rather vacuous aspiration similar to that of informed consent? Even worse, could patient "empowerment" have a deleterious effect? The paper reviews some of the major issues and concludes that the expert patient initiative could have benefits for both patients and health professionals if operated on the basis of concordance: an informed collaborative alliance that optimises the potential benefits of medical care.     

Complicating causality: patient and professional perspectives on obstetric fistula in Nigeria

Obstetric fistula, a preventable maternal morbidity characterised by chronic bladder and/or bowel incontinence, is widespread in Nigeria. This qualitative, multi-site study examined the competing narratives on obstetric fistula causality in Nigeria. Research methods were participant observation and in-depth interviews with 86 fistula patients and 43 healthcare professionals. The study found that both patient and professional narratives identified limited access to medical facilities as a major factor leading to obstetric fistula. Patients and professionals beliefs regarding the access problem, however, differed significantly. The majority of fistula patients reported either delivering or attempting to deliver in medical facilities and most patients attributed fistula to a lack of trained medical staff and mismanagement at medical facilities. Conversely, a majority of health professionals believed that women developed obstetric fistula because they chose to deliver at home due to women’s traditional beliefs about womanhood and childbirth. Both groups described financial constraints and inadequate transport to medical facilities during complicated labour as related to obstetric fistula onset. Programmatic insights derived from these findings should inform fistula prevention interventions both with healthcare professionals and with Nigerian women.     

Patient empowerment in the United States: a critical commentary

Whilst there is no consensus amongst analysts regarding how best to define 'patient empowerment', at the very least, this concept entails a re-distribution of power between patients and physicians. Empowered patients attempt to take charge of their own health and their interactions with health care professionals. Empowerment can occur at different levels (micro, meso, and macro) and patients have different ideas about what it means to 'take charge' and 'be empowered'. Some patients simply want to be given information about their conditions whilst others want to have full control over all medical decision-making. Some empirical evidence suggests that active patient participation in health care is associated with better patient outcomes. This field is ripe for future studies which both help to develop theoretical models of patient empowerment and articulate the conditions under which patient empowerment occurs.     

The Catalonian Expert Patient Programme for Chagas Disease: An Approach to Comprehensive Care Involving Affected Individuals

The Catalonian Expert Patient Programme on Chagas disease is a initiative, which is part of the Chronic Disease Programme. It aims to boost responsibility of patients for their own health and to promote self-care. The programme is based on nine sessions conducted by an expert patient. Evaluation was focusing in: habits and lifestyle/self-care, knowledge of disease, perception of health, self-esteem, participant satisfaction, and compliance with medical follow-up visits. Eighteen participants initiated the programme and 15 completed it. The participants were Bolivians. The 66.7 % of them had been diagnosed with chagas disease in Spain. The 100 % mentioned that they would participate in this activity again and would recommend it to family and friends. The knowledge about disease improve after sessions. The method used in the programme could serve as a key strategy in the field of comprehensive care for individuals with this disease.     

广州市社区老年高血压患者自我管理现状及干预效果的分析*

目的 为了探究签约服务内容的更新变化,在同一个区域内进行签约居民与未签约居民就诊选择和服务内容利用的描述与比较,把握两类居民使用基层医疗服务内容情况的差异。方法 采用两阶整群抽样方法,在上海市3家社区卫生服务中心范围内抽取的2 120名居民进行问卷调查。 结果 61.03%的签约居民优先选择在社区医院就诊,非签约居民仅为33.23%;与非签约居民相比,签约居民对于社区卫生服务的利用程度显著高于未签约居民。 结论 随着上海市结合居民实际需求创新服务内容,签约服务内容利用情况有了进一步的延伸与拓展。两类居民对于基层卫生医疗服务的认可度存在显著差异,这表明签约服务的吸引力仍待进一步强化。     

广州市社区老年高血压患者自我管理现状及干预效果分析

目的分析广州市社区老年高血压患者自我管理现状及干预效果,为改善社区卫生服务提供依据。方法采用整群抽样的方法,抽取60~75岁确诊为高血压且建立健康档案的486例患者为目标人群,采用一般情况问卷,高血压患者自我管理、自我效能量、社会支持和慢性病资源问卷进行调查,运用SPSS 18.0统计软件分析自我管理的影响因素;按照单纯随机分组方法将研究对象随机分为对照组和观察组,每组各组243例。对照组采取常规医疗干预,由医务人员随机进行;观察组进行综合干预(常规医疗+自我管理),由自我管理卫生服务团队主持,干预时间为18个月。结果 486例患者有68.1%处于低等自我管理水平,其中管理水平较低的是用药管理(68.1%)、饮食管理(58.8%)和情绪管理(46.3%);自我效能方面,年龄、文化程度、丧偶独居和慢性病管理是自我管理总分的主要影响因素;综合干预后,观察组自我效能和自我管理得到显著改善(P<0.05),血压控制优良率显著高于对照组(P<0.05),而血压控制不良率显著低于对照组(P<0.05)。结论自我效能、社会支持、慢性病管理、文化程度与自我管理总分关系密切,综合干预能够显著改善患者自我管理、自我效能和血压控制水平,值得借鉴和推广。     

健康素养、授权能力对初诊2型糖尿病患者自我管理能力的影响研究

目的 探索健康素养、授权能力对初诊2型糖尿病患者自我管理能力的影响，为开展糖尿病人的自我管理干预提供理论依据。方法 采用方便抽样的方法，运用自拟问卷、慢性病患者健康素养量表、糖尿病授权中文简化量表、中文版糖尿病自我管理量表对687名初诊2型糖尿病患者进行调查。采用多元线性回归模型分析健康素养、授权能力对初诊2型糖尿病患者自我管理能力的影响，并采用Bootstrap法对健康素养、授权能力及自我管理能力间的中介效应进行检验。结果 初诊2型糖尿病患者健康素养得分为(69.93±23.30)分，授权能力得分为(3.02±0.96)分，自我管理得分为(24.34±12.40)分。健康素养、授权能力和自我管理得分三个变量，两两之间呈正相关。多元线性回归结果显示，健康素养、授权能力与婚姻状况是自我管理能力的影响因素。授权能力在健康素养对自我管理的影响中发挥着部分中介效应的作用，中介效应占比10.51%。结论 在糖尿病患者的健康管理工作中，应重视提高初诊2型糖尿病患者的健康素养，授权能力和自我管理能力。     

Wellbeing and empowerment: the importance of recognition

Health and wellbeing are now located within a policy framework that emphasises the empowerment of the individual 'consumer'. Within this paradigm, empowerment is writ large and wellbeing is seen as a 'civic duty'. The role of the health and social care services has been identified as one of enabling service users to promote their own wellbeing. In this paper, it is argued that dominant narratives relating to 'achievement' and 'normality' may result in forms of 'misrecognition' that act to undermine the positive sense of self that is crucial for self-empowerment. It is suggested that while the parents of disabled babies often act reflexively to create empowering life narratives within the private sphere, this is not always facilitated by their encounters with health and social care organisations where neo-liberal ideas and biomedical narratives, based on a modernist view of identity as individual and existing prior to society, mean that parents and children are attributed 'deficient' identities in ways that undermine empowerment. With reference to 'the politics of recognition', it is argued that services that seek to empower must value diversity and alterity whilst respecting human dependency on intersubjective recognition.     

Information that informs rather than alienates families with disabled children: developing a model of good practice

The importance to families with disabled children of relevant and accessible information about services has been illustrated in numerous studies and was re-emphasised by the Department of Health's 'quality protects' initiative. Indeed, the provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory processes for service users and their families. However, although there has been considerable research highlighting parents' information needs, there has been significantly less exploration of how parents would actually like to receive this information. This paper seeks to bridge this knowledge gap and also discusses the empowering potential of user-friendly information. Drawing upon data collected from focus group discussions with parents caring for children with a range of disabilities or chronic illnesses, this paper explores how the families of service users would like to receive information. In particular, it examines the criteria by which parents judge the quality of information and their ideas as to what constitutes good practice, especially in terms of how information is presented, its content and the way it is delivered. Using these ideas and criteria, the paper begins to develop a model of good information practice that is both three-dimensional and personally interactive. Indeed, parents' desire for a combination of personal guidance and good-quality information, whether in the form of in-depth booklets or shorter directories, is viewed as being of paramount importance and, furthermore, as having an important empowering potential.     

构建基于移动互联网的患者赋能型心衰健康管理平台

目的构建基于移动互联网的患者赋能型心衰健康管理平台,促进心衰患者进行自我管理,改善临床结局。方法开展课题研究型品管圈活动,搜集高质量临床证据,构建患者赋能型心衰健康管理平台,通过平台推广与应用,对心衰患者行为进行干预。结果平台应用后,医护人员心衰知识水平显著提升,心衰患者自我护理能力明显提升,患者再入院率、死亡率明显下降,应用效果良好。结论基于移动互联网的患者赋能型心衰健康管理平台是心衰慢性病管理的有效手段。     

Childbirth in Cuba: analysis of the experience of medically supervised delivery from an anthropological perspective

Knowledge about pregnancy, childbirth, and postpartum in Cuba is currently deficient. Childbirth has been fundamentally studied as a medical event from its clinical aspects. Analysis of the reproductive process from the Medical Anthropology perspective could contribute to healthcare services providing more humane treatment and empowerment for women and men as the persons primarily responsible for their reproductive processes. This study investigated the experience and perception of childbirth in three hospitals in Havana. The scope of this research was to understand the representation and practice of childbirth and to describe the experiences of women during this event. Qualitative investigation techniques were used, together with interviews and participant observation of 36 women in labor, ten family members and nine obstetricians. The qualitative data was analyzed using Grounded Theory methodology. All the childbirths occurred with numerous medical interventions and the maternity experience was very intense. The participation of men was limited. From the anthropological perspective the routine use of some medical interventions and the institutional regulations described are considered manifestations of physical and gender violence.     

An empowerment-based approach to developing innovative e-health tools for self-management

E-health is seen as an important technological tool in achieving self-management; however, there is little evidence of how effective e-health is for self-management. Example tools remain experimental and there is limited knowledge yet about the design, use, and effects of this class of tools. By way of introducing a new view on the development of e-health tools dedicated to self-management we aim to contribute to the discussion for further research in this area. Our assumption is that patient empowerment is an important mechanism of e-health self-management and we suggest incorporating it within the development of self-management tools. Important components of empowerment selected from literature are: communication, education and health literacy, information, self-care, decision aids and contact with fellow patients. All components require skills of both patients and the physicians. In this discussion paper we propose how the required skills can be used to specify effective self-management tools.     

Provider-sponsored virtual communities for chronic patients: improving health outcomes through organizational patient-centred knowledge management

Patients with long‐term chronic disease experience numerous illness patterns and disease trends over time, resulting in different sets of knowledge needs than patients who intermittently seek medical care for acute or short‐term problems. Health‐care organizations can promote knowledge creation and utilization by chronic patients through the introduction of a virtual, private, disease‐specific patient community. This virtual socialization alters the role of chronic disease patients from external consumers of health‐care services to a ‘community of practice’ of internal customers so that, with the tacit support of their health‐care organization, they have a forum supporting the integration of knowledge gained from the experiences of living with chronic disease in their self‐management. Patient‐centred health‐care organizations can employ the virtual community to direct and support the empowerment of chronic patients in their care.