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.     

A step in the right direction: people with learning difficulties moving into the community

It is more than a decade since the government announced that Regional Health Authorities (RHAs) should close their long-stay mental handicap hospitals. The North West Regional Health Authority's (NWRHA) commitment to the resettlement of people with learning difficulties into ordinary housing in the community pre-dated the government's cost-driven initiative. In 1982 the Region published A Model District Service, a strategy document supported by both the District Health Authorities (DHAs) and the local social services departments, in which it set out a user-centred philosophy for community services for people with learning difficulties. This paper is based on an evaluation of the impact of that strategy, the central part of which was an examination of the experiences of 102 people who moved out of three large mental handicap hospitals between March 1990 and March 1991. The research team's primary concern was to obtain information from the people with learning difficulties who had moved into the community. Unstructured interviews were conducted with those with an adequate level of communication, photographs were used to assist those with very limited communication; Observations were made over a period of time of those without any communication skills at all. Interviews were also conducted with the formal care worker in the community and, where there was one, a relative who had meaningful contact with their learning disabled relative. The research found that the move into the community offered the people concerned a much improved quality of life, with greater independence and choice in everyday living. However, there is a need to build on this so that people's life experiences are not merely better than those offered by the already discredited institutions, but so that they can become fully integrated and respected members of society.     

Occupation and Well-being: A Study of Some Slovenian People's Experiences of Engagement in Occupation in Relation to Well-being

This study investigated some Slovenian people's experiences of well-being whilst engaged in daily occupations. No research has previously been carried out in this area in Slovenia. Research is needed to improve our knowledge about people's experiences while carrying out occupations to be able to better understand the needs of potential clients. In this qualitative study, focus groups involving 24 Slovenians from different parts of the country participated in the data collection. Four central themes were identified in the analysis: (1) occupation as the organizer of a preferred rhythm that creates a feeling of balance in life, (2) occupation as the creator of an experience of mastery and control, (3) occupation as a facilitator of social relationships, and (4) occupation as a way to connect and contribute to family and society.     

“They’re always in a hurry” – Older people´s perceptions of access and recognition in health and social care services

The article examines older people's perceptions of quality of life from the perspective of access and use of health and social care services. The data include focus group discussions with older people living alone. The data were analysed using thematic analysis focusing on the older people's collective views on health and social care services as supportive or restrictive factors for their quality of life. Two central themes were present in all the focus group discussions: the importance of accessing services and information regarding the services, and need for recognition within the services/by the professionals. Both themes were connected to the older people's desire to maintain autonomy in their everyday life despite increasing functional disabilities, which was seen as an important factor of quality of life. The older people felt that accessing and finding information about the services was difficult, and dependent on the professional's good will and the older person's own financial resources. Within the services, older people experienced a lack of recognition of their own personhood and individual needs. The participants felt that they were easily bypassed and left out of negotiations regarding their own care. The article highlights the importance of developing health and social care services and practices towards a more holistic approach recognising older people's individual needs.     

Ethical review: Standardizing procedures and local shaping of ethical review practices

Since ethical review practice has developed in relation to specific regulatory regimes and local contexts, it cannot be understood without paying attention to the institutional context of ethical review practices. We believe the tendency towards strong central governance and standardization in ethical review implies a lack of understanding of how specific local institutional contexts actually affect ethical review practices. Our question is: “How do local institutional contexts relate to the way REC's shape their formal mandate, and what are the implications for research governance?” To get in-depth insights in how REC's shape their formal mandates in every-day practice, we did a qualitative ethnographic-sociological study of three Dutch REC's in different contexts: an academic context, a care context and a commercial context. In analyzing these three REC's we paid attention to the procedures operative in REC practices, the cultures and everyday experiences of REC members, the scientific, social and financial resources that are available to REC's, and the evaluative perspective REC's employ. We conclude that specific local, institutional contexts offer valuable resources for ethical review. To track this, insight into the institutional configuration as a whole is necessary. Variations in the ways REC's shape their formal mandate should not be regarded problematic, but rather as fruitful opportunities for public learning.     

Effects of digital engagement on the quality of life of older people

It is often asserted that older people's quality of life (QOL) is improved when they adopt information and communication technology (ICT) such as the Internet, mobile phones and computers. Similar assumptions are made about older people's use of ICT‐based care such as telecare and telehealth. To examine the evidence around these claims, we conducted a scoping review of the academic and grey literature, coving the period between January 2007 and August 2014. A framework analysis approach, based on six domains of QOL derived from the ASCOT and WHOQOL models, was adopted to deductively code and analyse relevant literature. The review revealed mixed results. Older people's use of ICT in both mainstream and care contexts has been shown to have both positive and negative impacts on several aspects of QOL. Studies which have rigorously assessed the impact of older people's use of ICT on their QOL mostly demonstrate little effect. A number of qualitative studies have reported on the positive effects for older people who use ICT such as email or Skype to keep in touch with family and friends. Overall, the review unearthed several inconsistencies around the effects of older people's ICT use on their QOL, suggesting that implicit agreement is needed on the best research methods and instrumentation to adequately describe older people's experiences in today's digital age. Moreover, the available evidence does not consider the large number of older people who do not use ICT and how non‐use affects QOL.     

Assessment of Youth-Friendly Health Care: A Systematic Review of Indicators Drawn From Young People's Perspectives

PurposeTo review the literature on young people's perspectives on health care with a view to defining domains and indicators of youth-friendly care.MethodsThree bibliographic databases were searched to identify studies that purportedly measured young people's perspectives on health care. Each study was assessed to identify the constructs, domains, and indicators of adolescent-friendly health care.ResultsTwenty-two studies were identified: 15 used quantitative methods, six used qualitative methods and one used mixed methodology. Eight domains stood out as central to young people's positive experience of care. These were: accessibility of health care; staff attitude; communication; medical competency; guideline-driven care; age appropriate environments; youth involvement in health care; and health outcomes. Staff attitudes, which included notions of respect and friendliness, appeared universally applicable, whereas other domains, such as an appropriate environment including cleanliness, were more specific to particular contexts.ConclusionThese eight domains provide a practical framework for assessing how well services are engaging young people. Measures of youth-friendly health care should address universally applicable indicators of youth-friendly care and may benefit from additional questions that are specific to the local health setting.     

Might constraint be compatible with care? Home care as a situational ethics

Respecting the autonomy and will of people has legitimately led to strictly control the use of constraint in care activities, and promote a care ethics centred around people's needs and wills. But constraint is underlying in any action aiming at making people do something, even with their consent, especially when their ability to evaluate what is best for them may be altered. Ceaselessly present in care, this ordinary, silent constraint should not be only deemed as a necessary evil to be prevented. In contrast with this legally‐based view, the paper adopts a pragmatic perspective. Leaning on minute case studies carried out at disable people's homes, the empirical section takes up some key troubling moments between caregivers and patients as trials capable of revealing ‘constraint in practice’: a situation of uncertainty, doubt, hesitations on the appraisal of what is happening and how to deal with it, banning any clear‐cut distinction between technical gestures and moral values. Having outlined the characters of such a ‘situational ethics’, the authors argue in conclusion that, provided caregivers are never quits with its use, constraint is compatible with care, and assume that care theories could fruitfully support this advocacy to ‘maintaining the trouble’ in care practices.     

Whose evidence? Agenda setting in multi-professional research: Observations from a case study

This paper presents findings from a study that investigated the relationship between research and practwice on a Nursing Development Unit (NDU) in a hospital in the UK. The over-arching aim of the NDU was to promote individualised patient care. This requires the experiences and life goals of the patient, including the patient's and family construction of risk, to inform the care planning process. Two projects, undertaken by nurses on the ward, one on inpatient self-medication and the other on the management of falls, are analysed as case studies in order to address the questions: (1) How do nurses develop and research patient-centred care? (2) What are the implications of their choice of methodology in relation to their stated aims of individualising care? The paper demonstrates how conventions about research methodology and outcomes dominated the nurses' interpretation of research, the hospital research agenda and the literature on the research topics. These conventions shaped the construction of risk and safety within the hospital setting compromising practice developments designed to support the implementation of individualised care processes.     

How young people find out about their family history of Huntington's disease

Family communication about adult-onset hereditary illness can be problematic, leaving some relatives inadequately informed or ignorant of their risk. Although studies have explored the barriers and facilitators in family communication about genetic risk, questions remain about when, what, how and indeed whether to tell relatives. The process of disclosure is also dependent upon the way in which genetic information is realized and understood by recipients, but research here is limited. Our paper explores young people's experiences of finding out about a family history of the hereditary disorder Huntington's disease (HD). In-depth interviews explored how and when young people found out, their reactions to different communication styles and any impact on family relations. We recruited young people through the North of Scotland regional genetics clinic and the Scottish Huntington's Association (SHA). Thirty-three young people (aged 9–28) were interviewed. A qualitative analysis was undertaken which revealed four types of disclosure experiences: (1) having always been told, (2) gradually told, (3) HD was kept a secret, or (4) HD as a new diagnosis. In particular, the timing and style of disclosure from relatives, and one's stage of awareness, were fundamental in structuring participants' accounts. This article focuses on questions of when, how and indeed whether to tell children, and sits within a broader set of research and practice issues about what professionals and families (should) tell children about parental illness and genetic risk.     

Beyond the definition of formal care: Informal care arrangements among older swedes who are not family

This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent‐living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.     

Exploring Transitions with Disabled Young People: Our experiences,Our Rights and Our Views

At the beginning of the 2000's there was little evidence of outcomes from the participation of disabled children and young people in decision-making within public services. In the 15 years that have followed, advances have been made in participatory research and in outcome-led research. This paper, written with young people, will present evidence of the outcomes from a research project led entirely by a group of disabled young people. We are Aidan, Jessica and Jamie and we are part of the eXtreme group which is supported by Investing in Children (a children's human rights project based in the North East of England). The eXtreme group consists of 50 young people aged 12–19 who get involved in decision-making to improve the lives of disabled people. Investing in Children promotes children and young people's rights. Over the past year we have made children's voices heard, by getting them involved in decision-making. One of the topics we have looked at is Transitions, and we are putting together a DVD based on people's experiences, such as young people moving from schools into colleges or universities or into adult services. Transitions processes start at primary school right through to applying for a job. In every step of the way, young people with disabilities have different experiences through Transitions. This research has been carried out entirely by young people who are now working with local services to make improvements.     

Health geography and the 'performative' turn: making space for the audio-visual in ethnographic health research

The purpose of this paper is to critically reflect on the added value of video in ethnographic research that seeks to understand peoples' lived experiences of health and place. Of particular interest is the potential for video to elicit the embodied, multisensory and relational nature of people's place experiences that are the focus of much recent health geography research. We draw on our experiences of using video in an ethnographic study that sought to explore the experiences of people with intellectual disabilities engaged in nature based (or 'green care') therapeutic interventions for health and wellbeing. We argue that video has the potential to capture aspects of people's wellbeing experiences that may be lost using other methods, such as observational field noting. Consideration is also given to how researchers using video methods should seek to (re)present people's wellbeing experiences, as well as the practical and ethical challenges that this approach has for those working in the field of health geography.     

On interviewing people with pets: reflections from qualitative research on people with long‐term conditions

There is mounting evidence that pets are associated with physiological, psychological and social benefits for humans. Much of this research has come from western countries, where there have been consistent calls for greater engagement with pet ownership and health. Drawing on a secondary analysis of 61 in‐depth interviews with people, or carers of people, with long‐term conditions, we explore how pets feature in people's narrative accounts of their experiences. Our findings demonstrate the multifaceted nature of people's relationships with pets, and the embedded and embodied ways in which human–nonhuman interactions are played out in narratives of chronic illness. Our study differs from other work on pets and health in that, by returning to the interview video recordings, we were able to explore the sometimes three‐way interactions, the co(a)gency, between participants, pets and researchers. Pets were often presented as important family members, yet the researchers’ responses to the presence or talk about pets was often markedly different from their reactions to other household members. We conclude with cautioning against the downgrading of pets in narrative health research. Narrative approaches may invite participants to talk about what is important to them, yet they clearly have limitations in practice.     

Striving to Make a Difference: Health Care Worker Experiences With Intimate Partner Violence Clients in Tanzania

In this article we describe health care workers (HCWs’) experiences and perceptions of meeting clients exposed to intimate partner violence (IPV). Qualitative content analysis of in-depth interviews from 16 informants resulted in four main themes. The first, “internalizing women's suffering and powerlessness,” describes HCWs’ perceptions of violence, relating it to gender relations. The second, “caught between encouraging disclosure and lack of support tools,” refers to views on possibilities for transparency and openness. The third, “Why bother? A struggle to manage with limited resources,” illustrates the consequences of a heavy workload. Last; “striving to make a difference,” emphasizes a desire to improve abilities to support clients and advocate for prevention.     

Ricoeur’s narrative philosophy: A source of inspiration in critical hermeneutic health research

Patient‐centred care has gained ground in health service following a health policy initiative aimed at changing the paternalistic culture towards one with more patient involvement. Development of knowledge relating to people's lived experiences of illness is important in this context. Literature in the field of health science describes methods for exploring what is at stake for people affected by illness, and the French philosopher Paul Ricoeur has been a significant source of inspiration. Especially, Ricoeur's interpretation theory has been construed and applied in different, often schematic, methodological variations, whereas his narrative philosophy is a little used source of inspiration. Health science has been characterized by a biomedical awareness of method and the idea that there is a direct and immediate path to patients' experiences, a viewpoint that can be traced back to Descartes and the philosophy of subjectivism. Opposed to Descartes, Ricoeur says that we are already embedded in a world of traditions and meanings over which we have no control. According to Ricoeur, we leave traces when we express ourselves, and traces are formed by the world of meanings and traditions to which we belong. Often, the sense in the traces is hidden, making it impossible to directly understand individual's experiences. Reflection on an individual's lived experiences must take place via the narratives in which the individual expresses themselves. The centrepiece of Ricoeur's narrative philosophy is the threefold mimesis, which is an approach to understanding the meaning of peoples' lived experiences. The philosophical hermeneutics of Gadamer plays an important role in Ricoeur's theory of interpretation, although he has criticized Gadamer for failing to include one dimension in his philosophy; he finds this dimension in Habermas' ideology critique. Ricoeur's ideology critique is absent in health science research, which is why it has been made a focal point in this article.     

新中国70年卫生改革发展的道路与展望

新中国成立70年以来，党和国家始终高度重视人民健康。针对不同时期人民健康的主要影响因素，不断推进卫生改革发展，稳步提升公共卫生服务能力，构建起世界上最大的基本医疗保障网，不断健全医疗卫生服务体系，提高医疗质量水平，使群众从“不得病、少得病”到“看得起病、看得上病、看得好病”，提高了人民健康水平，走出了一条符合我国国情的卫生改革发展道路，为全球健康治理和人类命运共同体建设贡献了中国智慧。历史经验表明，我国卫生改革发展要坚持党的领导和与时俱进的卫生健康工作方针，坚持立足国情，预防为主，卫生工作与群众路线相结合。随着新时代我国卫生健康事业面临社会主要矛盾变化、经济社会转型、人口疾病状况转变、医改进入深水区等一系列形势和挑战，要始终坚持正确的改革理论、路径和方法，为人民健康更好地提供全方位、全周期的健康保障，同时为全球健康治理提供更多的智慧和经验。