National survey of Patient Advice and Liaison Services (PALS) in England: children, young people and parents' access to and use of PALS

BACKGROUND: Patient Advice and Liaison Services (PALS) have been set up in the National Health Service (NHS) in England to enable patients and the public to access information and raise issues they are concerned about their health care. The aim of this study was to examine to what extent, and how, PALS have promoted children's, young people's and parents' access to and use of the service. METHODS: A postal questionnaire was sent to PALS in 553 NHS Trusts and Primary Care Trusts (PCTs). PALS in Ambulance Trusts, and Specialist Trusts that were known not to provide services for children and young people, were excluded. RESULTS: Questionnaires were returned by 320 respondents representing 369 trusts - a response rate of 67%. Seventy-seven responses were not valid, giving a final sample of 243 PALS. This included 122 PALS serving PCTs, 101 serving NHS Trusts, 15 serving a mix of both PCTs and NHS Trusts, and five serving children's hospitals. The responses suggest that, to date, most PALS have been developed as a generic service, with some making special efforts to target specific groups of patients and sections of the public. However, where such efforts have been made, they have tended to focus most of all on older people and least of all on children. CONCLUSIONS: PALS are intended to serve all sections of the community and accordingly need to be developed in ways that ensure the service is accessible to hard-to-reach groups such as children and young people. The remainder of the research will examine children, young people and parents' perspectives on how PALS can involve them, and will provide associated guidelines for trusts.     

Developing biographies: the experiences of children,young people and their parents of living with a long‐term condition

This article reports on data from a qualitative interview study that sought to understand the experiences, choices and actions of children and young people undergoing surgery for a long‐term condition and that of their parents. Using the concept of biography the article examines how the biographies of children, young people and their parents can be influenced by surgery and the ongoing management of a long‐term continence condition. This article challenges previous work that characterises the presence of a condition from birth as a continuous and normal part of the illness experiences of these patients. Although this may be the case in some instances, children, young people and their parents can experience diverse and changing experiences associated with ongoing condition management as well as surgery. Biographical continuity, enrichment and disruption are all relevant concepts for such patients living with a long‐term continence condition. These can be influenced by their previous experiences of their condition, their expectations, and dynamics with parents, including changes associated with development and the increasing independence of young people.     

Consulted but not heard: a qualitative study of young people's views of their local health service

Objectives  The objective of this study was to identify what children and young people in a health district in a large urban area experience as positive – and not so positive – about their local health services, in the light of a growing expectation that users play a more central role in the design and delivery of services. Design  A qualitative study incorporating a range of methods, including interviews, play techniques and a website. Setting  Schools, nurseries, community groups, in‐ and outpatient settings in an inner London health authority. Participants  Young people aged between 4 and 19 years, from community (n = 92) and clinical (n = 57) settings. This included ‘hard‐to‐reach’ children, including those leaving care, those in touch with the criminal justice system, asylum seekers, and those with learning disabilities. Results  Alongside planning and environment issues, young people particularly emphasized the impact of communication and relationships with staff on their experience of health services. Discussion and conclusions  Using a range of flexible and age‐appropriate techniques, young people, even those as young as 4 or 5, are able to comment helpfully on their experiences of service provision. What children had to say is revealing but not astonishing to those working in the National Health Service (NHS). Clinicians and managers, to whom our findings were fed back, made this clear. If we have known for so long that the issues raised here are problems, why are we so poor at acting on this knowledge? The authors suggest four explanations.     

Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication

Within recent policies and initiatives, there is a growing emphasis on outcomes-focused practice and user-defined outcomes to ensure that the children and families most at risk of social exclusion have every opportunity to build successful and independent lives. However, we still know little about what children and young people with disabilities consider constitutes a good quality of life. The present paper reports the findings of a qualitative research project that aimed to identify the desires and aspirations of children and young people with complex health care needs (CHNs), as well as those who do not use speech for communication (NS) and their parents. Fifty families participated in this study; 26 families had a child with CHNs and 24 had a child with NS. Semistructured interviews were carried out with 50 parents, 18 children and 17 other informants (teachers and other non-parent carers who knew the child well). A range of visual or non-verbal techniques were used to facilitate interviews with children. The research found that, while children and their parents aspired to the same sort of outcomes as those of non-disabled children, such as to have friends, interests and future independence, the specific meaning they attached to certain outcomes and the way they prioritised aspirations differed. These findings have implications for the ways in which outcomes are defined and measured, and the role of services in achieving these outcomes.     

The ‘risk gradient’ in policy on children of drug and alcohol users: Framing young people as risky

Parental drug and alcohol problems can have a profound impact on children. There is a growing policy and practice focus on this topic in the UK. Most is concerned with children of primary school age and younger. Older children tend to be neglected in the debate, and young people of age 16 years and over are mostly absent from it. It is argued here that this reflects, and is reflected in, the construction of a ‘risk gradient’ in policy and practice. An analysis of Hidden Harm, the report of the Advisory Council on the Misuse of Drugs' inquiry into the impact of parental drug misuse, and related documents, is used to illustrate this. In the risk gradient, children are constructed as being at risk when younger, and becoming risky to themselves and others when older. The risk gradient stigmatizes young people as manifesters of risk, diminishes ongoing difficulties they face, and denies their coping strategies. The definition of risk as manifesting in institutional settings and services underscores this. It encourages a focus on parent – child risk transfer, to the detriment of other difficulties the child or young person may be facing, and renders the young person invisible when they leave service contexts. Finally, the culturally and legally established distinction between illicit drugs and alcohol tends to isolate families with alcohol problems. Most of the response to parental substance use has focused on illicit drugs, rendering the difficulties of young people affected by alcohol problems less visible except when they are manifesters of risk.     

Listening to children: gaining a perspective of the experiences of poverty and social exclusion from children and young people of single-parent families

This paper reports on the experiences and views of children and young people of single-parent families, as findings from a European Union-funded research project undertaken in England, Greece and Cyprus. The objectives of the research project were to investigate how children and young people of single-parent families understand and experience their worlds as members of these families: whether and to what extent they experience poverty and social exclusion and how they cope with the challenges that this confronts them with. Methodology was replicated in each of the countries; however, this paper draws on the English experiences. Semistructured interviews (40) and focus groups (four) were undertaken with children of single parents. In addition, focus groups were undertaken with children of two-parent families (four), focus groups with single parents, focus groups with two-parent families (four) and individual interviews with key professionals. Detailed discussion guides were followed, with open-ended questions to allow participants to express their feelings and ideas in their own words. The research sample included children from single-parent and two-parent families, aged 6 years to 16 years, balanced in terms of age, gender and geographical location. Findings demonstrate the children's and young people's understanding of the impact of poverty and social exclusion on their family life and their everyday experiences. The positive benefits of being in a single-parent family are highlighted, with 'time poverty' raised as a significant issue. Children and young people are aware of their poverty and how it influences exclusion from friendships, play, leisure and community activities. Policy needs to take account of the systematic reality of children's experiences; alliances with adults that support meaningful involvement and participation by children and young people will make a significant contribution to this.     

Families' and healthcare professionals' perceptions of healthcare services for children and young people with medically unexplained symptoms: a narrative review of the literature

Children and young people frequently report physical complaints that have no observable physical pathology known as medically unexplained symptoms (MUS). Research suggests that MUS are associated with substantial physical and psychological impairments and may have a negative impact on children's and young people's functional status and well‐being in the long term. Due to the potentially complex needs of this group, children and young people with MUS may require timely access to suitable health and social care services to effectively manage symptoms and achieve their academic, social and personal potential. Families and professionals can offer important insights into the availability and appropriateness of current community and specialist health and social care services. This review is the first critical evaluation and synthesis of research that has examined families' and healthcare professionals' (HCP) perceptions of healthcare services for children and young people with MUS. A systematic search of electronic databases and manual searches of key journals and reference lists identified 17 papers from 15 studies for inclusion in the review. The review highlights the paucity of rigorously conducted research on this topic. Studies have been narrowly focused on the views of a homogeneous group of mothers and young people attending single centres. There has been some attempt to examine doctors' views, but the perceptions of children, fathers and health and social care professionals are absent or under‐represented, and multi‐site and longitudinal studies are lacking. Thematic analysis of the results from the included studies suggests that knowledge, communication, health beliefs and healthcare settings are factors that influence families' and HCPs' perceptions of services. Families report dissatisfaction with some HCPs' approach to managing MUS. The findings suggest that children and young people with MUS are at risk of receiving suboptimal care and support because there is insufficient research to inform high‐quality, evidence‐based practice.     

Factors associated with outcomes for looked-after children and young people: a correlates review of the literature

In 2008, the Department of Health made a referral to the National Institute for Health and Clinical Excellence and the Social Care Institute for Excellence to develop joint public health guidance on improving the physical and emotional health and well-being of children and young people looked after by the local authority/state. To help inform the decision-making process by identifying potential research questions pertinent to the outcomes of looked-after children and young people (LACYP), a correlates review was undertaken. Iterative searches of health and social science databases were undertaken; searches of reference lists and citation searches were conducted and all included studies were critically appraised. The correlates review is a mapping review conducted using systematic and transparent methodology. Interventions and factors that are associated (or correlated) with outcomes for LACYP were identified and presented as conceptual maps. This review maps the breadth (rather than depth) of the evidence and represents an attempt to use the existing evidence base to map associations between potential risk factors, protective factors, interventions and outcomes for LACYP. Ninety-two studies were included: four systematic reviews, five non-systematic reviews, eight randomized controlled trials, 66 cohort studies and nine cross-sectional studies. The conceptual maps provide an overview of the key relationships addressed in the current literature, in particular, placement stability and emotional and behavioural factors in mediating outcomes. From the maps, there appear to be some key factors that are associated with a range of outcomes, in particular, number of placements, behavioural problems and age at first placement. Placement stability seems to be a key mediator of directional associations. The correlates review identified key areas where sufficient evidence to conduct a systematic review might exist. These were: transition support, training and support for carers and access to services.     

The effectiveness of training and support for carers and other professionals on the physical and emotional health and well-being of looked-after children and young people: a systematic review

Looked-after children and young people (LACYP) are recognized as a high-risk group for behavioural and emotional problems, and additional specialist training for foster carers may reduce such problems. This systematic review aimed to identify and synthesize evidence on the effectiveness of additional training and support provided to approved carers, professionals and volunteers on the physical and emotional health and well-being of LACYP (including problem behaviours and placement stability). Searches of health and social science databases were conducted and records were screened for inclusion criteria. Citation and reference list searches were conducted on included studies. Included studies were synthesized and critically appraised. Six studies were included (five randomized controlled trials and one prospective cohort study), all of which focused on foster carers. Three studies reported a benefit of training and three reported no benefit but no detriment. Those reporting a benefit of training were conducted in the USA, and had longer-duration training, shorter follow-up assessment and recruited carers of younger children than studies that reported no benefit of training, which were conducted in the UK. Whether the difference in results is due to the type of training or to cultural or population differences is unclear. The findings suggest a mixed effect of training for foster carers on problem behaviours of LACYP. The evidence identified appears to suggest that longer-duration training programmes have a beneficial effect on the behaviour problems of LACYP, although future research should examine the impact of training durations and intensity on short-medium and longer-term outcomes of LACYP of different ages. Only training and support for foster carers was identified.     

“They sat and actually listened to what we think about the care system”: the use of participation,consultation, peer research and co-production to raise the voices of young people in and leaving care in England

ABSTRACT

There has been increased recognition of the importance of hearing the views of children and young people in and from care about the services and decisions that affect their lives. The emphasis on young people's voices aims to give weight to, and raise awareness of, their experiences and outcomes, and the need for policy and practice improvements. This paper discusses the development of methodologies for hearing and acting upon the voices of care-experienced children and young people. It charts the journey towards increased levels of active involvement, from research participation and consultation to peer research and co-production. Using examples from our own empirical studies, the paper outlines key features of these different techniques and the opportunities, challenges and impact they engender. It looks at the recent transition towards greater participation through co-production and peer research in which children and young people are active and equal agents in the production of services to address their needs, and in the design and production of research aiming to evaluate those services. Finally, we provide our reflections and those of some of the young people we have worked with on how to achieve meaningful and authentic engagement with care-experienced children and young people.     

北京地区2002-2006年急性呼吸道感染儿童中鼻病毒感染的研究

目的对北京地区急性呼吸道感染患儿的鼻病毒（HRV）感染状况进行分析，以初步了解近年来鼻病毒感染在儿科患者中的流行规律。方法收集2002年11月至2006年11月来自首都儿科研究所附属儿童医院门诊及病房急性呼吸道感染患儿标本共3292份，应用针对HRV145’端非编码区（5’-NCR）保守区基因序列设计的引物进行巢式PCR检测标本中HRV。结果3292份标本中HRV总阳性检出为507份，占本组检测标本的15．4％（507／3292），其中门诊患儿中阳性检出率为16．7％，住院患儿为14．5％；HRV阳性检出率在咽炎患儿中达到50．0％（8／16），在急性支气管炎的喘息性支气管炎患儿中为17．5％（14／80），其他如急性支气管肺炎、毛细支气管炎等患儿中也有较高的HRV阳性检出率；在以血液系统疾病等为第一诊断，合并有呼吸道病毒感染的患儿中HRV检测阳性率为26．4％（14／53）。HRV感染的季节性分布中，2003年的检出高峰在9月份，阳性检出率达32．6％；2004年检出率最高的是2月份（阳性检出率为24．2％），但与其他年度相比，阳性率略低；2005年的检出高峰在2月份，阳性检出率达35．3％；2006年的检出高峰在3月份，阳性检出率为31．3％。在HRV检测阳性的患儿中，年龄≤1岁的占44．8％，其次为～2岁（15．4％）、～3岁（12．4％）年龄组的患儿。结论HRV不仅可引起急性上呼吸道感染，在下呼吸道感染患儿中也有较高的感染率，在息其他疾病导致抵抗力低下时易于并发呼吸道鼻病毒感染。HRV感染存在于各年龄组并全年均可发生。随年龄增长，HRV阳性检出率逐渐降低。婴幼儿，尤其是1岁以下的婴儿是HRV的易感人群。     

中国西部五省农村婴幼儿营养不良及影响因素分析

  目的  了解中国6～24月龄婴幼儿生长迟缓情况及喂养行为对其的影响。  方法  利用2013年中国居民营养与健康状况监测数据,共得到10 084名6～24月龄婴幼儿体测数据及喂养行为现状,计算获得年龄别身长（HAZ）,分析各喂养行为与HAZ之间的相关性。  结果  2013年中国6～24月龄婴幼儿生长迟缓率为7.17 %,男童（8.87 %）高于女童（5.35 %）;家庭年人均收入较高和母亲学历较高者婴幼儿生长迟缓发生率较低;大城市、中小城市、非贫困县和贫困县生长迟缓发生率分别为2.83 %、5.33 %、7.66 %和14.36 %,呈依次增加趋势;各组之间比较差异均有统计学意义（P < 0.05）。logistic回归分析显示,影响6～24月龄婴幼儿生长迟缓的主要喂养行为因素为过去1周各类食物摄入频次。  结论  中国6～24月龄婴幼儿生长迟缓患病状况在贫困农村依然呈较高水平,而喂养行为是否科学直接影响婴幼儿的生长发育状况。建议倡导科学喂养,尤其应重视婴幼儿的辅食添加质量。