Multi‐agency working in services for disabled children: what impact does it have on professionals?

Whilst agencies in many sectors have been encouraged to work together to better meet the needs of service users, multi-agency working is now a central feature of government policy. In relation to children's services, the National Service Framework, the English green paper, 'Every Child Matters' (DfES, 2003) and the Children Bill (DfES 2004) give a high priority to an integrated approach to service provision. This paper focuses on multi-agency working for disabled children with complex health-care needs, a group of children who, perhaps even more than most, require the many professionals who support them and their families, to work more closely together. Drawing on the findings from a 3-year qualitative research study, this paper examines the impact of working in a multi-agency service on professionals. Interviews with 115 professionals concluded that staff were overwhelmingly positive about working as part of a multi-agency service. They reported improvements to their working lives in areas such as professional development, communication, collaboration with colleagues, and relationships with families with disabled children. However, whilst professionals felt that they were able to offer families a more efficient service, there was concern that the overall impact of multi-agency working on disabled children and their families would be limited.     

Involving families who have deaf children using a Family Needs Survey: a multi-agency perspective

BACKGROUND: Meeting the needs of deaf children and their families is multidisciplinary. Models of multi-agency working are diverse, and there is little evidence on outcome for family and child. Effective collaboration is an essential part of multi-agency working, and how this is achieved is an area that warrants research. METHODS: An approach was developed to identify family needs using a need identification tool called a Family Needs Survey (FNS) in conjunction with a multi-agency meeting. The FNS was introduced in a pilot study to involve parents of deaf children with services and to identify their needs from their perspective. RESULTS AND CONCLUSIONS: A clear pathway was determined for application of the FNS. A model of multi-agency working was developed that involves families directly with different services at one time. Outcomes were measured by uptake of the FNS, parental attendance at multi-agency meetings, and completion of a parent evaluation questionnaire. Discussion of the FNS at a multi-agency meeting facilitates communication between professionals and between professionals and parents. There is some evidence that the FNS may be a useful tool. The majority of parents completed a FNS before multi-agency meetings and have indicated they are happy to share the information with other professionals.     

Disabled children (0-3 years) and integrated services--the impact of Early Support

Early Support (ES) is the flagship government programme aimed at improving multi-agency working with, and supporting enhanced outcomes for, children with a disability 0-3 years and their families. This paper draws on results from the recently completed Department for Education and Skills commissioned national evaluation of ES involving 46 pathfinder projects throughout England. Data were collected by survey at two points in time (9 months apart), by focus groups with service providers and parents, and through secondary data analyses, including exploratory economic evaluation. This paper outlines some of the key findings pertaining to the relationship between integrated children's services and the impact of ES. As such, we address three concerns: what the evidence from ES can tell us about the relationships between universal and targeted provision within integrated children's service structures, the relationship between specific short-term initiatives and their longer-term sustainability within integrated children's services structures and the potential costs and benefits of ES looking forward to its implementation on a national basis within an integrated children's services environment. Although focused primarily on children with a disability in the early years, implications will be drawn for the implementation of Lead Professional Guidance and the Common Assessment Framework more generically.     

Listen to me, too! Lessons from involving children with complex healthcare needs in research about multi-agency services

BACKGROUND: Children with complex healthcare needs are often excluded, both from active involvement in research projects and from direct consultation in services. During a 3-year research study into multi-agency services for children with complex healthcare needs, the authors involved children in a number of innovative ways and endeavoured to discover what impact, if any, multi-agency working made to them. METHODS: The researchers 'spent time' with 18 children with complex healthcare needs. They used a variety of methods to engage with the children in a meaningful way. More than half of the children had no verbal communication, so it was necessary in some cases to work with an advocate, usually the parent, to aid the process. RESULTS: Children with complex healthcare needs can take part in research as long as the research is set up sensitively and flexibly. In terms of the impact of multi-agency working, the authors concluded significant advances had been achieved for this group: almost all the children were living at home and attending school. However, there were significant gaps in addressing children's human rights in relation to communication, independence and relationships. In addition, many of the children had very little effective direct consultation with the multi-agency services. CONCLUSIONS: There are significant advances in involving disabled children in research and in service delivery, but there is still some way to go in involving those with complex healthcare needs. The challenges are considerable, but the benefits far outweigh these, not least being the value that parents, carers and the children themselves place upon being listened to.     

The participation of children and young people in decisions about UK service development

BACKGROUND: The involvement of children and young people in decisions regarding service development is well supported in government policy and underpinned by the UN Convention on the Rights of the Child. Information on the extent, nature and outcomes of children and young people's participation can inform further development in this area. METHODS: Systematic literature searches, plus contact with professional networks, were used to gather and review evidence on children and young people's participation. RESULTS: There is a rapidly developing body of information describing and analysing innovative practices in this field. However, there is also a smaller, but substantial, amount of evidence demonstrating the limited extent of current involvement. A good deal of guidance is now available about how to promote the involvement of children and young people. However, the basis of this advice is not always clear, and more evidence about children's views and their experience of participation in public decision-making is required. Issues identified as barriers to change included adult attitudes and intransigence, lack of training for key adults, lack of clarity leading to tokenism, the nature of organizations (i.e. their formality, complexity, bureaucracy and internal politics) and the short-term nature of much funding. The evidence suggests that good practice includes a listening culture among staff, clarity, flexibility, adequate resources, skills development and training for staff and participating children and young people, inclusion of marginalized groups, feedback and evaluation. There is only limited evidence that children and young people's involvement in public decision-making leads to more appropriate services, although there is evidence that participating children and young people benefit in terms of personal development and that staff and organizations learn more about their views. CONCLUSIONS: The value of the participation of children and young people in public decision-making is now well accepted, and is recognized in the standards set in the Children's National Service Framework. However, there is an urgent need for internal and external evaluations of children's involvement.     

Key worker services for disabled children: the views of staff

Provision of 'key workers' for disabled children and their families, working across health, education, and social services, has been recommended in the Children's National Service Framework. This study investigated the views of staff of key worker services concerning the organisation and management of the services. Interviews were carried out with key workers (N=50), managers (N=7) and members of multi-agency steering groups (N=32) from seven key worker services in England and Wales. A response rate of 62% was obtained. Major themes emerging from the interviews were identified, a coding framework was agreed upon, and data were coded using the qualitative data analysis programme Max QDA. Results showed that although the basic aims of the services were the same, they varied widely in the key workers' understanding of their role, the amount of training and support available to key workers, management and multi-agency involvement. These factors were important in staff's views of the services and inform recommendations for models of service.     

On the road to nowhere? Young disabled people and transition

BACKGROUND: A key issue, and one known to be highly problematic and challenging, concerns the transition of young disabled people from children's services to adult services, and from childhood to adulthood. To inform its recommendations on this issue, the Disabled Children's External Working Group (EWG) for the Children's NSF commissioned a review of research on young disabled people and transition. METHODS: Given the preponderance of grey literature in this area, database searches were supplemented by hand searching of key journals and contacts with key individuals, research units, publishers and funding bodies in order to identify relevant literature on the experiences of transition from the perspectives of young people, parents and practitioners; the outcomes of transition; and evaluations of services provided during this life-stage. RESULTS: The evidence available with regard to transitions of young disabled people provides a clear and consistent picture of the way transitions are currently experienced by young disabled people and their families. There is limited evidence on what works to ensure smooth transitions between services and positive outcomes of transition for the young people themselves. CONCLUSIONS: Existing research is very persuasive on the need to improve transitions for young disabled people. It can also be used to provide clues as to the sorts of support and service configurations that need to be in place to ensure positive transitions. However, further research is needed both at the level of specific service/service model evaluation as well as holistic, longitudinal work to provide evidence on the long-term outcomes of young disabled people as they move into adulthood.     

Limited english proficiency, primary language at home, and disparities in children's health care: how language barriers are measured matters

BACKGROUND: Approximately 3.5 million U.S. schoolchildren are limited in English proficiency (LEP). Disparities in children's health and health care are associated with both LEP and speaking a language other than English at home, but prior research has not examined which of these two measures of language barriers is most useful in examining health care disparities. OBJECTIVES: Our objectives were to compare primary language spoken at home vs. parental LEP and their associations with health status, access to care, and use of health services in children. METHODS: We surveyed parents at urban community sites in Boston, asking 74 questions on children's health status, access to health care, and use of health services. RESULTS: Some 98% of the 1,100 participating children and families were of non-white race/ethnicity, 72% of parents were LEP, and 13 different primary languages were spoken at home. "Dose-response" relationships were observed between parental English proficiency and several child and parental sociodemographic features, including children's insurance coverage, parental educational attainment, citizenship and employment, and family income. Similar "dose-response" relationships were noted between the primary language spoken at home and many but not all of the same sociodemographic features. In multivariate analyses, LEP parents were associated with triple the odds of a child having fair/poor health status, double the odds of the child spending at least one day in bed for illness in the past year, and significantly greater odds of children not being brought in for needed medical care for six of nine access barriers to care. None of these findings were observed in analyses of the primary language spoken at home. Individual parental LEP categories were associated with different risks of adverse health status and outcomes. CONCLUSIONS: Parental LEP is superior to the primary language spoken at home as a measure of the impact of language barriers on children's health and health care. Individual parental LEP categories are associated with different risks of adverse outcomes in children's health and health care. Consistent data collection on parental English proficiency and referral of LEP parents to English classes by pediatric providers have the potential to contribute toward reduction and elimination of health care disparities for children of LEP parents.     

What services do young children with autism spectrum disorder receive?

BACKGROUND: In recent years, standards of good practice have been set for services to young children with autism spectrum disorders. METHODS: Data were analysed on children's use of local services during a 2-year follow-up of families involved in an evaluation of a group course for parents. Data collection began prior to publication of the standards. RESULTS: Families' reported experiences changed over time, but for most did not meet standards suggested: involvement with a multi-agency team of professionals, having someone who acted as a key worker, and the child accessing 15 h per week of specialist provision. CONCLUSION: The development of flexible and responsive services appears to have a long way to go to meet standards set in the Autistic Spectrum Disorders Good Practice Guidance (2002) and the National Autism Plan for Children (2003).     

Issues in multidisciplinary teamwork for children with disabilities

This paper presents a review of key issues surrounding multidisciplinary work in relation to the care of children with disabilities and their families. The discussion is based on experience of working in a child development team and research visits to teams around Britain at the beginning of the 1990s. An outstanding feature of child disability services is their organizational diversity. The research found that district interagency planning groups were a rarity, as were multi-agency management groups for teams. Thus it was rare for teams to have clear lines of external accountability. Similarly leadership and management structures within the teams had a profound influence on their effectiveness. Issues are highlighted for identifying good practice and for further development of services.     

Parental views about services for children attending schools for the emotionally and behaviourally disturbed (EBD): a qualitative analysis

AIM: This study examines the views of parents of children attending schools for the emotionally and behaviourally disturbed (EBD). The study aims to gain an understanding of the journey through the educational system taken by these children and to explore their families' experience of services along the way. METHODS: Thirty parents of 25 children attending primary and secondary EBD schools in three South London boroughs took part in focus group discussions. Parents were asked about their experiences of services, including educational, health and social services, as well as how they thought services should be improved. RESULTS: Qualitative analysis identified a complex web of individual, professional and organizational factors which contributed to social exclusion of children with EBD problems and their families. These factors included children receiving inadequate education because of long periods of exclusion or inappropriate placements whilst waiting for a statement of special educational needs. Parents also felt personally socially excluded because of lack of childcare provision out of school hours. Many parents felt that their children did not fit into services and were constantly being passed on to other professionals. The analysis identified aspects of services that promote social inclusion and provide support to families, including acceptance of children into EBD schools, help from voluntary organizations and support from other parents with children with EBD problems. Parents particularly stressed the value of working in collaboration with professionals to achieve shared goals. CONCLUSION: EBD schools provide a valuable resource for parents. However parents often lack emotional and practical support in coping with their children's complex needs. Agencies need to improve communication and joint working to provide effective services for these families.     

Effective services to support children in special circumstances

BACKGROUND: Children living in special circumstances, defined as those who are at risk of achieving poorer outcomes than their peers, have a particular need of good quality, accessible services to promote their health and well-being, yet may be least likely to receive them. AIMS: This review considers the evidence for effective services to support children living in five kinds of special circumstances: (1) those at risk of offending; (2) teenage parents; (3) children whose parents have drug, alcohol or mental health problems; (4) children living with domestic violence; and (5) children who have been abused or neglected. In practice, there is often considerable overlap between these groups, and many children face multiple disadvantage. The review also aims to identify effective strategies for making support services more accessible to hard-to-reach groups. METHODS: Relevant literature was identified through searches of databases and websites, and consultation with experts. Given the broad scope of the topic, the aim was to provide an overview of best evidence rather than to undertake a systematic review. RESULTS: Similar themes underpin the most promising approaches to supporting children in special circumstances. These include: (1) a holistic, multi-agency approach addressing the needs of the whole child rather than compartmentalising children's social, educational, health and care needs; (2) the importance of links between adults' and children's services so that children who are in need because of their parents' circumstances can be identified and supported; and (3) the value of providing children in special circumstances with intensive, targeted support within a framework of universal provision. CONCLUSIONS: Overall, there is a lack of well-designed evaluations of the effectiveness of UK services and programmes for children in special circumstances. The existing evidence base would be strengthened by the development of better outcome measures, by exploring the characteristics of effective services from the perspective of different stakeholders (including children and young people themselves) and by extending the current problem-oriented approach to consider the factors that promote resilience and coping.     

Families With Children With Medical Complexity and Self-Management of Care: A Systematic Review of the Literature

This review analyzes the quantitative literature on children with medical complexity (CMC). Using the Pediatric Self-Management Model, evidence is summarized into facilitators and barriers to self-management. Current quantitative research focuses on the caregiver burden in families with CMC. A model for social work with families with CMC was introduced in response to these findings. A re-envisioned model allows the child with medical complexity to be seen as whole rather than focusing on typically deficit-based areas of medical specialty or service provision.     

Parent perspectives of clinical psychology access when experiencing distress

Around 20 to 30% of parents experience mental health difficulties within their child's first year, but only a small proportion go on to access specialist services. This is despite growing evidence around the positive benefits of psychosocial interventions for both parents and children. Previous research highlights facilitators and barriers to generic healthcare services for mothers with postnatal depression. The current study adopted a qualitative methodology to explore parents' own perceptions of the barriers and facilitators to clinical psychology specifically. Seven women took part in the study, most of whom had no previous involvement with specialist mental health services. A thematic analysis of interview data suggested six key themes in relation to the research question: 'The importance of connecting', 'Pressing the danger button', 'I'm not mad', 'More round care', 'Psychological distress as barrier' and 'Making space, making sense'. These are presented alongside a consideration of the clinical implications for community-based practitioners, including clinical psychologists.     

A scoping study: children,policy and cultural shifts in homelessness services in South Australia: are children still falling through the gaps?

Homeless families are the fastest growing segment of the homelessness population. Homelessness services are often the first to know when children are at risk of disengagement with health, welfare and education services. Changes to Australian policy to explicitly attend to the needs of children are attempts to address the complexity of, and provide better outcomes for, homeless children. There are mounting levels of evidence describing some of the needs of children who are homeless. Using the scoping study methodological framework, this review of academic and grey literature identified the extent to which service providers provide for the needs of homeless children. The literature search was conducted from September 2012 to April 2013 using ProQuest, Science Direct, Sage and OVID databases. Therefore, the objectives of this scoping study were to: (i) identify the specific needs of children in homelessness; (ii) describe recent changes in policy relating to care for children in homelessness services; (iii) explore the evidence on how service providers can enact care for children in homelessness services; (iv) identify the types of practice changes that are needed to optimise outcomes for children; and (v) identify the gaps in service delivery. This article describes the Australian policy changes and explores the potential impact of subsequent sector reforms on the internal practices in front‐line homelessness services, in order to overcome structural and systemic barriers, and promote opportunities for children in homeless families. This scoping study literature review contributes to the understanding of the impact of policy change on front‐line staff and suggests possible practice changes and future research options.     

Barriers and Facilitators to Providing Common Preventive Screening Services in Managed Care Settings

Despite increasing emphasis on disease prevention and health promotion, and ample evidence demonstrating the effectiveness of preventive services, such services are underutilized in the United States. The current trend of health care toward health maintenance organizations and other managed care systems opens the door, perhaps to more effective control of heart disease, cancers and other chronic diseases through preventive care. This warrants attention to the barriers/facilitators to the provision/utilization of preventive screening services in such settings. Overall goal of this study was to assess barriers/facilitators to the provision/utilization of preventive services in managed care organizations (MCOs). This was accomplished by a) identifying barriers/facilitators to the provision/utilization of three common preventive screening services (cholesterol screenings, mammograms, and Pap smears); and b) profiling typical MCO recipients of these three preventive screening services. A self-administered, mail questionnaire was used to obtain information from a national sample of 1,200 Directors of MCOs associated with preventive care. A total of 175 usable responses were received resulting in a 17.3 percent net response rate. The strongest barrier to the provision of all three screening services is the inability of them to generate short term savings for the MCO. Other barriers include high disenrollment rates, conflicting recommendations about effectiveness (for mammograms and cholesterol screenings), and patients' fears of getting a positive result (for mammograms and Pap smears). The improved health status as a result of early intervention, high consumer awareness (for mammograms and Pap smears), and long term savings are important facilitators to the provision/utilization of these screening services. Comparing barriers and facilitators across the three services shows the stronger barriers affecting the provision/utilization of mammograms. For all three screening services, typical managed care recipients are those in the high income groups with greater education levels. However, with the increasing enrollment of Medicaid beneficiaries into managed care, MCOs may find themselves selectively targeting these high risk low income and less educated individuals to receive the preventive screening services. Study findings should be useful to health planners, policymakers and researchers at all levels in their efforts to encourage and promote healthier lifestyle choices among U.S. residents. Future studies should address receipt of preventive services by Medicaid and Medicare beneficiaries in managed care settings.     

Clinical Pharmacy Services in the Home

Articles on clinical pharmacy services in the home began appearing 3 decades ago but numbers have greatly increased in the last decade. This overview of the English language literature identified 66 reports describing 57 home-based clinical pharmacy programs. Most programs were provided in the context of a time-limited research project. Medication reviews (defined as comprehensive assessment of the appropriateness of the medication regimen) and medication management (defined as assessment and support of medication compliance) were the most common services provided. Primary care, post-hospital discharge, and home healthcare were the typical service contexts, and elderly patients at high risk of medication problems were the primary target population. The early literature predominantly focused on medication management and patient counseling services based in the US; however, since 1991, reports of medication review programs in the UK and Australia have dominated.Barriers to home-based clinical services have been identified at the healthcare system, pharmacy, pharmacist, physician, and patient levels. The most common barriers are lack of (or inadequate) remuneration and the related barriers of community pharmacy or pharmacist time constraints, and the cost and time to attain and maintain pharmacist qualifications. Other important barriers are difficulty in accessing the physician to discuss drug therapy recommendations, and inadequate patient referrals. Additional barriers pertaining to the delivery of the clinical service include inadequate clinical training of community pharmacists, service provision by a pharmacist unknown to the patient, and limited access to patient information for the pharmacist. Patient barriers are lack of awareness, reluctance to accept an intervention from the pharmacist, inaccessibility, and forgetting appointments or refusing the service after initial agreement.The most commonly cited facilitators pertain to the pharmacist-physician relationship; foremost among these is having an established working relationship between the pharmacist and family physician. Others are face-to-face meetings between pharmacist and prescribing physician, and facilitator positions in Divisions of General Practice. A few facilitators of the referral system, pharmacist motivation, and service delivery have also been identified.Evaluative data were provided for 48 programs; 21 programs were evaluated within a randomized controlled trial. Thirteen of these trials found at least one statistically significant difference between groups; however, although important outcomes such as hospitalization and quality of life were often examined, the only parameter that was affected on a consistent basis was medication compliance (four of six trials).The literature on clinical pharmacy services in the home is growing and maturing. While medication review is the most common type of service reported, several other types of clinical services have been explored in this setting. Although evaluation of impact has become more rigorous over time, the overall evidence is limited and many questions remain about optimal practice models and target patient populations. Given the time intensity of home-based services, it is important that more research be conducted to provide firm evidence of value.     

A systematic review of integrated working between care homes and health care services

Background

In the UK there are almost three times as many beds in care homes as in National Health Service (NHS) hospitals. Care homes rely on primary health care for access to medical care and specialist services. Repeated policy documents and government reviews register concern about how health care works with independent providers, and the need to increase the equity, continuity and quality of medical care for care homes. Despite multiple initiatives, it is not known if some approaches to service delivery are more effective in promoting integrated working between the NHS and care homes. This study aims to evaluate the different integrated approaches to health care services supporting older people in care homes, and identify barriers and facilitators to integrated working.

Methods

A systematic review was conducted using Medline (PubMed), CINAHL, BNI, EMBASE, PsycInfo, DH Data, Kings Fund, Web of Science (WoS incl. SCI, SSCI, HCI) and the Cochrane Library incl. DARE. Studies were included if they evaluated the effectiveness of integrated working between primary health care professionals and care homes, or identified barriers and facilitators to integrated working. Studies were quality assessed; data was extracted on health, service use, cost and process related outcomes. A modified narrative synthesis approach was used to compare and contrast integration using the principles of framework analysis.

Results

Seventeen studies were included; 10 quantitative studies, two process evaluations, one mixed methods study and four qualitative. The majority were carried out in nursing homes. They were characterised by heterogeneity of topic, interventions, methodology and outcomes. Most quantitative studies reported limited effects of the intervention; there was insufficient information to evaluate cost. Facilitators to integrated working included care home managers' support and protected time for staff training. Studies with the potential for integrated working were longer in duration.

Conclusions

Despite evidence about what inhibits and facilitates integrated working there was limited evidence about what the outcomes of different approaches to integrated care between health service and care homes might be. The majority of studies only achieved integrated working at the patient level of care and the focus on health service defined problems and outcome measures did not incorporate the priorities of residents or acknowledge the skills of care home staff. There is a need for more research to understand how integrated working is achieved and to test the effect of different approaches on cost, staff satisfaction and resident outcomes.

     

We're all in it together: supporting young carers and their families in Australia

Although recent initiatives in Australia have attempted to respond to the needs of children and young people with care responsibilities, many continue to be unable to access responsive supports. A qualitative, exploratory study was conducted to identify the current needs and barriers to services for young carers and their families in Canberra, Australia. This paper focuses on a range of family, service and systems level issues that impede young carers' access to services. The findings are based on semistructured, face-to-face interviews conducted with 50 children and young people with care responsibilities. Purposive and snowballing sampling were used to recruit the sample. Peer researchers were involved in the development of the research parameters and conducted and analysed interviews. Young carers in this sample reported high levels of need but low levels of support provided formally and informally by their extended families and the service sector. Major barriers to support included reluctance within families to seek assistance for fear of child removal, negative intervention and increased scrutiny; the families' lack of awareness of available services; a lack of flexibility and responsiveness to the holistic needs of families; and a lack of service collaboration. The importance of recognising the specific needs of each member within the family unit was particularly highlighted as was the need for responsive and co-ordinated service supports.     

Multidisciplinary, interdisciplinary, or dysfunctional? Team working in mixed-methods research

Combining qualitative and quantitative methods in a single study-otherwise known as mixed-methods research-is common. In health research these projects can be delivered by research teams. A typical scenario, for example, involves medical sociologists delivering qualitative components and researchers from medicine or health economics delivering quantitative components. We undertook semistructured interviews with 20 researchers who had worked on mixed-methods studies in health services research to explore the facilitators of and barriers to exploiting the potential of this approach. Team working emerged as a key issue, with three models of team working apparent: multidisciplinary, interdisciplinary, and dysfunctional. Interdisciplinary research was associated with integration of data or findings from the qualitative and quantitative components in both the final reports and the peer-reviewed publications. Methodological respect between team members and a principal investigator who valued integration emerged as essential to achieving integrated research outcomes.