Making choices about support services: disabled adults' and older people's use of information

This paper explores how disabled adults and older people find and use information to help make choices about services. It presents findings from a qualitative longitudinal study in England. Thirty participants had support needs that fluctuated, meaning that additional services might be needed on a temporary basis; and 20 had the sudden onset of support needs resulting from an accident or rapid deterioration in health. Each disabled adult or older person was interviewed three times between 2007 and 2009, using a semi-structured topic guide. They were asked to discuss a recent choice about services, focussing, amongst other things, on their use of information. Interviews were transcribed and coded, then charted according to emergent themes. A wide range of choices and sources of information were discussed. These were dominated by health and to some extent by social care. Key findings are that information was valuable not just in weighing up different service options, but as a precondition for such choices, and that disabled adults and older people with the gradual onset of support needs and no prior knowledge about services can be disadvantaged by their lack of access to relevant information at this pre-choice stage. Timely access to information was also important, especially for people without the support of emergency or crisis management teams. Healthcare professionals were trusted sources of information but direct payment advisers appeared less so. Ensuring that practitioners are confident in their knowledge of direct payments, and have the communication skills to impart that knowledge, is essential. There may be a role also for specialist information advocates or expert lay-advisers in enabling disabled adults and older people to access and consider information about choices at relevant times.     

The implications for social services departments of the information task in the social care market

The new information task faced by social services departments (SSDs) implementing the 1990 community care policy is huge. This paper notes the breadth and complexity of the early guidance on the subject and then examines the nature of the task and the issues it raised in a shire county. Three aspects are delineated: mapping needs, mapping the market and monitoring expenditure. We found that the county experienced a culture shift in order to accommodate the new requirements, but had difficulty in timing the introduction of its information and information technology (IT) software systems. Change associated with one aspect of implementation had important knock-on effects in others. We highlight the danger of procedures becoming system-driven and of staff being overwhelmed by the call for information. We note that by the end of 1994 (the end of the research period) the county was facing what we have termed ‘second wave’ challenges. We conclude that implementing community care requires an indefinite investment in people and systems and that the process challenges are in danger of diverting attention away from user and carer experiences and from outcomes.     

Genetic screening in maternity care: preventive aims and voluntary choices

This paper analyses a prenatal genetic screening programme for three gene defects, conducted at maternity care centres in Eastern Finland in 1995 and 1996. What is special in this case is that the screening ended sooner than was planned. This paper investigates how the genetic screening programme was launched, the problems it encountered and the circumstances of its closure. The present analysis focuses on the co‐existence of, and tensions between, the two major objectives of the project: preventing disability and increasing mothers' choices. The tensions between these two objectives were highlighted at maternity care centres. The public health nurses working at these centres were confused about whether or not they should offer autonomous consumer choice or guidance to mothers to behave in responsible and health‐conscious ways. The nurses' confusion was intensified because the goal of prevention was identified with financial savings for the municipality, which the nurses thought was an inappropriate reason for abortions.     

''Balance'' is in the eye of the beholder: providing information to support informed choices in antenatal screening via Antenatal Screening Web Resource

OBJECTIVES: The Antenatal Screening Web Resource (AnSWeR) was designed to support informed prenatal testing choices by providing balanced information about disability, based on the testimonies of disabled people and their families. We were commissioned by the developers to independently evaluate the website. This paper focused on how participants evaluated AnSWeR in terms of providing balanced information. SETTING: West Yorkshire. PARTICIPANTS: A total of 69 people were drawn from three groups: health professionals, people with personal experience of tested-for conditions (Down's syndrome, cystic fibrosis and spina bifida) and people representing potential users of the resource. METHOD: Data were collected via focus groups and electronic questionnaires. RESULTS: Participants believed that information about the experience of living with the tested-for conditions and terminating a pregnancy for the conditions were important to support informed antenatal testing and termination decisions. However, there were differences in opinion about whether the information about the tested-for conditions was balanced or not. Some people felt that the inclusion of photographs of people with the tested-for conditions introduced biases (both positive and negative). Many participants were also of the opinion that AnSWeR presented insufficient information on termination of an affected pregnancy to support informed choice. CONCLUSION: This study highlighted the difficulty of designing 'balanced' information about tested-for conditions and a lack of methodology for doing so. It is suggested that AnSWeR currently provides a counterbalance to other websites that focus on the medical aspects of disability. Its aim to provide 'balanced' information would be aided by increasing the number and range of case studies available on the website.     

A measure of informed choice

Objective  To develop a measure of informed choice.
Conceptualization and measurement  The measure is based on the following definition of an informed choice: one that is based on relevant knowledge, consistent with the decision-maker's values and behaviourally implemented. The measure comprises an eight-item scale of knowledge, a four-item scale assessing attitudes towards undergoing the screening test and a record of test uptake.
Participants  Sixty-six women awaiting their first antenatal clinic appointments.
Measure development  In women offered a screening test in pregnancy, the internal reliability of both the knowledge and the attitude scales was acceptable (alpha coefficients 0.82 and 0.83, respectively). Of the 42 women completing both scales, 18 were classified as having made an informed choice, and 24 were classified as having made an uninformed choice.
Conclusion  The results of this preliminary study provide some evidence to support the feasibility of conceptualizing and measuring informed choices regarding screening using a brief measure assessing knowledge and attitudes. The validity and utility of this approach awaits further studies, involving larger numbers of participants, offered different screening tests.     

Personalised social care for adults with disabilities: a problematic concept for frontline practice

This paper explores the complexities and contradictions of frontline practice that pose problems for personalised social care through enhanced choice. It draws on semi-structured interviews with community care workers, social workers, occupational therapists and care managers in a social service department. Practitioners interviewed were asked about their current assessment and documentation system, including the assessment documents currently used; how they approached information gathering and the topics they explored with service users; and their experience of documenting assessment and care management. The paper argues that the validity and sustainability of personalised social care in frontline practice relies on developing a thorough understanding of the complex and implicit assessment processes operating at the service user/practitioner interface and the inevitable tensions that arise for practitioners associated with the organisational context and broader service environment. The findings demonstrate the variability among practitioners in how they collect information and more importantly, the critical role practitioners occupy in determining the kinds of topics to be explored during the assessment process. In so doing, it shows how practitioners can exert control over the decision-making process. More importantly, it provides some insight into how such processes are shaped by the constraints of the organisational context and broader service environment. Complexities and contradictions may be an inherent part of frontline practice. The issues discussed in this paper, however, highlight potential areas that might be targeted in conjunction with implementing personalised social care through enhanced choice for people with disabilities.     

Developing a typology of mobile phone usage in social care: A critical review of the literature

The ways in which mobile phones have transformed the boundaries of time and space and the possibilities of communication have profoundly affected our lives. However, there is little research on the use of mobiles in social care though evidence is emerging that mobile phones can play an important role in delivering services. This paper is based on a scoping review of the international literature in this area. A typology of mobile interventions is suggested. While most mobile phone interventions remain unidirectional and sit within traditional social care service provider–service user relationships, a minority are bi‐ or multidirectional and contain within them the potential to transform these traditional relationships by facilitating a collective development of social networks and social capital. Such transformations are accompanied by a range of issues and dilemmas that have made many service providers reluctant to engage with new technologies. We suggest that our typology is a useful model to draw on when researching the use of mobile phones in social care to support and empower isolated, marginalised and vulnerable service users.     

产后避孕的必要性及知情选择

产后期是开始避孕的重要时期,产后42天应对母婴进行全面检查并进行避孕教育和指导。我国妇女对于产后避孕重要性认识不足,以及避孕知识的匮乏,导致产后意外妊娠,产后妊娠及产后人工流产手术严重影响妇女身心健康。本文就产后避孕的相关内容进行阐述,以期提高产科医务人员对于避孕知识的宣教,并提醒广大妇女,产后及时采取避孕措施,避免意外妊娠造成的伤害。     

Exploring informed choice in the context of prenatal testing: findings from a qualitative study

Purpose This study explored whether and how a sample of women made informed choices about prenatal testing for foetal anomalies; its aim was to provide insights for future health policy and service provision. Methods We conducted semi‐structured interviews with 38 mothers in Ottawa, Ontario, all of whom had been offered prenatal tests in at least one pregnancy. Using the Multi‐dimensional Measure of Informed Choice as a general guide to analysis, we explored themes relevant to informed choice, including values and knowledge, and interactions with health professionals. Results Many, but not all, participants seemed to have made informed decisions about prenatal testing. Values and knowledge were interrelated and important components of informed choice, but the way they were discussed differed from the way they have been presented in scientific literature. In particular, ‘values’ related to expressions of women’s moral views or ideas about ‘how life should be lived’ and ‘knowledge’ related to the ways in which women prioritized and interpreted factual information, through their own and others’ experiences and in ‘thinking through’ the personal implications of testing. While some women described non‐directive discussions with health professionals, others perceived testing as routine or felt pressured to accept it. Conclusions Our findings suggest a need for maternity care providers to be vigilant in promoting active decision making about prenatal testing, particularly around the consideration of personal implications. Further development of measures of informed choice may be necessary to fully evaluate decision support tools and to determine whether prenatal testing programmes are meeting their objectives.     

Outcomes of social care for adults: attitudes towards collecting outcome information in practice

This paper discusses the findings of three studies of perspectives on social care outcomes undertaken by the Social Policy Research Unit (SPRU) at the University of York. The findings are related to conceptual and policy issues relevant to the idea of using outcome information in assessing performance. Respondents were managers in social services, academics, and organizations of disabled people, older people and carers. People gave their views on why outcomes were important, and what they perceived as the obstacles to implementing ways of looking at outcomes in routine or regular practice in social care. In principle, attitudes towards the collection and use of outcome information were overwhelmingly positive: results for service users and carers were at the heart of 'authentic' ideas of effectiveness, and were potentially of value in improving accountability and informing the decisions and activities of both purchasers and providers. However, a number of obstacles to implementing practical systems were identified including conceptual and technical issues, professional and organizational culture, resource constraints and the emphasis on assessment at the expense of review.     

农村妇女避孕节育知情选择干预效果评价

目的调查了解农村育龄妇女在干预前后避孕节育知情选择知晓率的变化。方法通过3年的电视、广播、咨询等多种形式的避孕节育知情选择干预措施，用基本内容相同的调查表对已婚育龄妇女进行2次问卷调查，对比干预前后知情选择知晓率的差异。结果在排除了年龄和文化程度因素引起的混杂后，仍然显示农村人群对避孕节育知情选择的认识、态度和能力的提高差异均有统计学意义。结论宣传教育和咨询等干预措施明显提高了农村群众对避孕节育知情选择的认识。     

医方保护性医疗与患者知情同意权冲突的制衡研究

保护性医疗与患者知情同意权间的矛盾已经浮出水面.虽然两者在理论和实践中存在一系列冲突,但这并不意味着其完全没有相容之处,其相容之处正在于它们的伦理一致性.文章在正确认识两者冲突的基础上,通过采取完善立法、区分各自适用情况等方法寻求制衡点,以期在保护下医疗制度下兼顾医患双方的权益.     

Early childhood education and care in urban China: the importance of parental choice

The education and care of children during their first years has long been a topic of debate for policy‐makers and researchers. In recent years, neurological and longitudinal research has highlighted the impact the education and care environment can have on the long‐term cognitive, social and emotional development of young children. China’s policy‐makers have acknowledged the implications this research has for China’s capacity to develop an innovative economy and harmonious society. This acknowledgement is now beginning to be reflected in policies and practices designed to shape the state’s investment in early years human development. In this paper, we discuss the importance of care and education in the early years and the need for parents to be able to make informed childcare choices. Information from the research literature is supported by a survey conducted across a number of cities in China.     

Estimating the value of social care

Increasingly, health economists are required to work across sectors when evaluating options for improving health, health care and well-being. Social care is a key sector which is both influenced by and influences the use and outcomes of health services. This paper reports on a developing approach to measuring social care outcome, designed to reflect outcomes across client groups. In this process it is important that we reflect the relative importance or value of these domains of outcome. This paper reports on a pilot study that investigated the feasibility of using discrete choice experiments to identify a financial “willingness to accept” valuation of a large number of domains and investigated factors associated with variations in respondents’ preferences. We conclude that, while the domains themselves need further work, the approach provides a helpful starting point in the difficult issue of reflecting population preferences for a large number of social care outcome domains.     

Paths to child social adjustment: parenting quality and children's processing of social information

BaCKGROUND: The purpose of this research was to examine the manner in which multiple influences on child social adjustment operated together to predict differential outcomes for young children. Specifically, this study was designed to (i) examine the role of social cognitive and emotional factors in parents' observed and self-reported behaviour towards their children, and (ii) investigate the impact of parenting and children's social information processing (SIP) patterns on children's subsequent social adjustment in the school setting. METHODS: A model of children's peer social adjustment was evaluated using a group of 166 children, over-sampled for history of physical child abuse. Assessment of constructs was multi-method, including parent and child self-reports as well as teacher reports of child adjustment and observations of parent-child and child-peer interactions. RESULTS: Using structural equation modelling, support was found for our theoretical model. Specifically, parents' negative child-related beliefs and clinical elevations in emotional distress were predictors of harsh, insensitive parenting, which in turn predicted children's SIP operations and social maladjustment 6 months later. However, children's SIP did not significantly predict their social adjustment above and beyond the impact of parenting. CONCLUSIONS: Results indicated that the quality of parenting that children received was more central to subsequent adjustment in peer interactions than were children's SIP operations. Furthermore, the quality of parenting children experienced was closely linked to parents' beliefs about their children and parents' mental health status. Directions for future research and potential implications for clinical practice are discussed.     

深圳市育龄妇女避孕方法知情选择现状调查

目的了解深圳市在实施国家制定的避孕方法知情选择政策后现状。方法在深圳地区选取研究对象998名,采用定性定量分析方法,对避孕知情选择政策实施后的态度和知识行为情况进行调查。结果深圳市通过实施避孕知情选择,有37.90%的育龄妇女考虑过更换避孕方法,在考虑过更换避孕方法的育龄妇女中,54.86%的育龄妇女进行了更换,满意率达91.92%。结论开展避孕知情选择后,育龄妇女避孕知识水平有所提高,但仍然需要改进。