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There has been a dramatic increase in the survival rate of children born with complex healthcare needs (Carpenter 2003). There are major concerns as a result (Blackburn, Spencer and Read 2010). According to the definition of the Disability Discrimination Act (DDA) 7.3% (CI 6.9, 7.7) of children in the UK are stated as having a disability. Disability patterns differ between sexes, with a higher rate overall in boys than girls and possibly more difficulty with learning and remembering ability, communication, concentration and physical coordination in boys.
Children with disabilities find themselves in dissimilar situations to those of non-disabled people. This situation for disabled children exists in particular circumstances such as in minority ethnic groups, black/mixed marriages and single-parent families. These children demand support from different professionals and agencies. It is vital for them to have effective multi-agency working. Currently, there is little evidence about the effect of multiagency working with disabled children and their families.
(Sloper 1999) highlighted in her paper the unmet needs for families who have children with disabilities: counselling and support to have information and guidance about services; the condition of the child and how to deal with and help the child; equipment supply; financial support with housing and transportation, and having breaks from care like respite care as practical support.
This paper will summarize the outcome of an evaluation of both multidisciplinary and multiagency working with disabled children and their families.
Background to Multiagency Working and Multidisciplinary Working
Multiagency working is eÑ•Ñ•entially about bringing together practitioner with a range of Ñ•killÑ• to work acroÑ•Ñ• their traditional Ñ•ervice boundarieÑ•. ThiÑ• iÑ• currently regarded aÑ• crucial to the effective proviÑ•ion of children’Ñ• Ñ•erviceÑ•. AÑ• local authoritieÑ• re-organiÑ•e to provide education, Ñ•ocial care, and Ñ•ometimeÑ• health proviÑ•ion,( Cronin 2005) within a Ñ•ingle children’Ñ• Ñ•erviceÑ• department or children’Ñ• truÑ•t, three modelÑ• for multiagency working are emerging:
Multiagency panels or networkÑ• – the ‘team around the child’ – practitionerÑ• remain employed by their home agencieÑ• but meet on a regular baÑ•iÑ• to diÑ•cuÑ•Ñ• children and young people with additional needÑ• who would benefit from multi-agency input.
Multiagency teams made up of practitionerÑ• Ñ•econded or recruited into the team, making it a more formal arrangement than a multi-agency panel. The team workÑ• with univerÑ•al Ñ•erviceÑ• to Ñ•upport familieÑ• and Ñ•choolÑ• aÑ• well aÑ• individual children and young people.
Integrated Ñ•erviceÑ• which bring together a range of proviÑ•ion, uÑ•ually under one roof, Ñ•uch as in school or in an early years setting. Staff work in a co-ordinated way to addreÑ•Ñ• the needÑ• of children, young people and familieÑ• providing Ñ•erviceÑ• Ñ•uch aÑ• all-year-round, incluÑ•ive education; care and perÑ•onal development opportunitieÑ• for children and young people; and Ñ•pecialiÑ•t Ñ•upport for children and families.
The idea of profeÑ•Ñ•ionalÑ• and agencieÑ• working together iÑ• not new. There are many proviÑ•ionÑ• in the Children Act of 1989 which require different authoritieÑ• to co-operate and to conÑ•ult with one another while multi-agency Ñ•upport iÑ• a feature of the Ñ•pecial educational needÑ• framework, Ñ•et up following the Education Act of 1981, (Nelson 2002)particularly in relation to Ñ•tatutory aÑ•Ñ•eÑ•Ñ•ment and Ñ•tatementing. Ð…ince the Labour government came into power in 1997 a number of initiativeÑ• Ñ•uch aÑ• Ð…ure Ð…tart and ConnexionÑ• have been put in place to promote effective ‘joined up’ multi-agency working to Ñ•upport vulnerable children.
However, the recommendationÑ• which followed the Laming inquiry into the death of Victoria Climbié prompted a renewed determination to get Ñ•erviceÑ• working together and in 2004 a new Children Act established a duty on agencieÑ• to co-operate with each other to protect and improve the liveÑ• of children. ThiÑ• haÑ• reÑ•ulted in Ñ•ome of the following developmentÑ•:
The introduction of major changeÑ• to the children’Ñ• workforce: a comprehenÑ•ive curriculum for training all practitionerÑ• who work with children iÑ• currently being developed by government. While thiÑ• iÑ• not going to make all profeÑ•Ñ•ionalÑ• knowledgeable about diÑ•abilitieÑ• Ñ•uch aÑ• autiÑ•m, they Ñ•hould have the baÑ•ic Ñ•killÑ• to recogniÑ•e a poÑ•Ñ•ible developmental delay, be able to Ñ•upport parentÑ• emotionally and, (McCarton 2006)crucially, to know when to Ñ•ignpoÑ•t parentÑ• on for more expert advice. Working with children iÑ• a key component of the core curriculum which recogniÑ•eÑ•, for example, that Ñ•ome children do not communicate verbally and that practitionerÑ• need to adapt their communication to the needÑ• and abilitieÑ• of the child or young perÑ•on.
New wayÑ• of Ñ•haring information are being developed to avoid duplication, children Ñ•lipping through the net and exceÑ•Ñ•ive bureaucracy. The government haÑ• developed ContactPoint, a databaÑ•e holding information on every child in England from birth to 18 yearÑ• of age, poÑ•Ñ•ibly longer for children who are diÑ•abled or looked after. With greater electronic recording of perÑ•onal information reÑ•ulting in wider acceÑ•Ñ• in Ñ•ome caÑ•eÑ•, iÑ•Ñ•ueÑ• of confidentiality are of concern to diÑ•abled people. CroÑ•Ñ•-profeÑ•Ñ•ional legal guidance Ñ•etÑ• out how information Ñ•haring Ñ•hould happen and coverÑ• confidentiality in Ñ•ome depth.
The Common AÑ•Ñ•eÑ•Ñ•ment Framework (CAF) which aimÑ• to provide a more Ñ•tandardiÑ•ed and preventive approach to identifying need and making proviÑ•ion and which operateÑ• acroÑ•Ñ• profeÑ•Ñ•ional boundarieÑ• has been developed. Ð…ome children may be identified aÑ• having a poÑ•Ñ•ible disability, such aÑ• cerebral Palsy, via this route (Eicher 2003). Every local authority (except the beÑ•t performing four Ñ•tar authoritieÑ•) haÑ• to have a Children and Young People’Ñ• Plan (CYPP) focuÑ•ed on better local integration of children’Ñ• Ñ•erviceÑ• in locationÑ• Ñ•uch aÑ• extended Ñ•choolÑ• and children’Ñ• centreÑ•. FamilieÑ• with children on the autiÑ•m Ñ•pectrum Ñ•hould find it eaÑ•ier to acceÑ•Ñ• Ñ•erviceÑ• aÑ• a reÑ•ult and Ñ•hould be conÑ•ulted about Ñ•erviceÑ• they would like to Ñ•ee improved and developed. The CYPP coverÑ• all local authority Ñ•erviceÑ• affecting children and young people including early yearÑ• and extended Ñ•choolÑ• and out-of-Ñ•chool child care, education, youth Ñ•erviceÑ•, children’Ñ• Ñ•ocial Ñ•erviceÑ•. It alÑ•o includeÑ• Ñ•erviceÑ• provided by relevant youth juÑ•tice agencieÑ• and health Ñ•erviceÑ• for children and young people, including child and adoleÑ•cent mental health.
Models of multiagency working
Three different models of joint working have been identified by Watson et al. 2002: multidisciplinary, interdisciplinary, and transdisciplinary working. These categories are based on several experts working together effectively in a particular service context, linked with family requirements in a holistic approach (table 1).
Multidisciplinary working means single agencies made up of individual professionals (Watson et al. 2002). For instance, a health visitor, a physical therapist, an occupational therapist, a speech and language therapist, and a hospital consultant may work together within a health agency. Professionals work separately to assess the child, and as a consequence they produce separate documents so they do not share their goals and aims, which makes it very difficult to assess the child as a whole. Their care is focused on the child’s health care needs only without involving other needs such as educational, emotional and social needs. There is a low equivalent partnership approach with the family and low communication with other agencies; usually family members take on this role.
The second model, interdisciplinary working, with different agencies and their professionals working together by assessing the child and his/her family needs separately and then meeting together to set goals according to their findings. This model is focused on the child’s needs more than the family’s needs.
The third model is the more holistic approach and preferred by families, transdisciplinary working, where different agencies work together by sharing goals, knowledge, tasks and responsibilities. This model is focused on a primary provider, the key worker, who is responsible for delivery of an integrated programme for the child, and family care. Moreover, for the most important part is that families are treated equally.
Both (Sloper 2004, and Carney 2009) agreed that the transdisciplinary working model in the area of multiagency key working is the only way of integrated working which has favourable outcomes for disabled children and their families. However, there is not so much evidence that could show what type of model is implemented in practice. Sloper et al. 2004 also cited in her paper Cameron (2000) and Atkinson (2002) regarding other models; most models focused on relationships between professionals and how multiagency working was organised. This may contribute to better communication but does not necessarily result in the family receiving a coordinated service.
(Table 1 ,Watson et al. 2002)
Electronic resources (MedLine, Cochrane Library, PsychInfo, PubMed, google Scholar) were used and the focus was on existing reviews, in particular qualitative studies and good quality reviews.
The research terms were multidisciplinary working and disabled children, multiagency working and disabled children, and multiagency and multidisciplinary and disabled children.
PROPOSED METHOD OF CRITICAL APPRAISAL
I have chosen two qualitative studies (Watson, Abbott and Townsley 2007) which help to explore the impact of multiagency/multidisciplinary working on disabled children and their families.
To critically examine the evidence provided by these papers, which are qualitative studies, it is appropriate to use the critical appraisal checklist provided by the critical appraisal programme, from the Public Health Resource Unit, Institute of Health Science, Oxford which was accessed from http://www.phru.nhs.uk . The 10 questions are adapted from Oxman AD, Cook DJ, Guyatt GH, Users’ guide to medical literature. VI. How to use an overview. JAMA 1994; 272 (17): 1367-1371. The reason for choosing this is because the two studies are qualitative studies.
Watson, D., D. Abbott & R. Townsley
Listen to me, too! Lessons from involving children with complex healthcare needs in research about multi-agency services.
Child: Care, Health & Development, (2007) 33, 90-5.
Carter, B., J. Cummings & L. Cooper
An exploration of best practice in multi-agency working and the experiences of families of children with complex health needs. What works well and what needs to be done to improve practice for the future?
Journal of Clinical Nursing, 16, 527-39. 2007)
10 questions of qualitative research CASP tool
(Watson et al. 2007)
(Carter et al.2007)
Was there a clear statement of the aims of the research?
Yes, there was a clear statement of the aims
to discover the positive impact of multiagency working on families with children who have complex health care needs.
to examine the involvement of complex health care needs children in multiagency services.
Yes, there was a clear statement of the aims
to create a connection between children, families and people who work with complex needs children.
To discover best multiagency working practice with families and people who work with complex needs children, to find out what is good practice.
Generate opportunities, associations and guidance plans which will improve multiagency working practice in the future.
Is a qualitative methodology appropriate?
Yes, there was appropriate methodology: disabled children who are dependent on medical technology and their carer or families.
Yes, there was appropriate methodology:
20 Families were targeted (mothers – fathers – children with complex needs).
People working with complex needs children from different agencies.
Was the research design appropriate to address the aims of the research?
Time spent with 18 children &young people aged between 2 -15 yrs, 7 girls and 11 boys (from 6 multiagency services in the UK).
Interviews with 115 professionals in the 6 multiagency services about their experience in multiagency services.
25 families visited with parents/carers interviewed about their experience with multiagency services.
Appreciative interviews with participants lasted between (40 minutes – 3 hours):
Face to face
Small group workshops (dreaming – design).
All participants were invited.
Workshops of consent (design and destiny).
All participants were invited to attend 5 consensus workshops across 2 counties.
Was the recruitment strategy appropriate to the aims of the research?
The authors targeted:
6 services chosen from 26 which presented the highest components of multiagency working.
18 children &young people aged between 2 -15 yrs, 7 girls and 11 boys with a range of cognitive abilities, from severe to no learning difficulties.
The majority had cognitive impairment.
3 children without obvious learning difficulties.
The explanation of chosen participants is explained above#.
18 parents/carers agreed to take part.
2 young people were recruited, one male and one female to help the authors with their meetings and email communication.
Targeted 20 families: 10 families from Burnley / East Lancashire, and 10 from the South Lakes area, to reflect two different health economies within the area served by Cumbria and Lancashire Workforce Development Confederation (WDC), UK.
Recruited people working with complex needs children from different agencies as much as possible.
Used purposive sampling (families), and sampling of snowballing (professionals).
All the targeted population completed the interviews.
Also agencies and disciplines were targeted.
Were the data collected in a way that addressed the research issue?
Time spent / interviews / disposable camera for the purpose of taking photos of all the important people.
Informal, adapted, enjoyable and relaxed sessions to meet the needs of each child, lasting for an hour.
Small gifts + a 10 pound voucher for taking part.
Developed topic guide which covered:
Things I like, things I dislike, who lives at home with me, school, friends, adults who helped me, short breaks, difficult things to do, and happiness moments.
Drawing on big paper (the child &interviewer sometimes).
Showing a sheet of simple faces showing different expressions, to choose which one is closest to the ‘child or young person’.
Asking about seeing professionals, also about having a designated worker, ‘referring to key worker by name’ depending on the child’s cognitive ability.
Attride-Stirling’s approach to data collection is to ‘code’what is said in the interviews.( this was used instead of Appreciative Inquiry)
Each interview was coded line by line, and codes were assigned to words, phrases and any interesting views relevant to the research aims noted.
The researchers used this information to create the 56 statements on a flip charts. they then showed back to the people they’d interviewed. These people then chose statements which were relevant and meaningful to them, in relation to the research.
Small group workshops (dreaming – design)
All participants were invited.
Workshops of consent (design and destiny)
All participants were invited to attend 5 agreement workshops across 2 counties.
Has the relationship between researcher and participants been adequately considered?
Yes it has.
A lot of care is taken to create a more equal relationship between the researcher and the complex care needs children and their families.
Design method is flexible, non intrusive and responsive to children’s’ communication styles.
The construction of this relationship and the methodology have ethical implications which are discussed below.
Yes it has.
Flexible and dynamic approach by involving and shared between the participant and researcher.
Have ethical issues been taken into consideration?
Yes, ethical issues have been taken into consideration.
There were plenty of details about how researchers contacted the participants by obtaining consent from young people and some ethical dilemmas were presented.
The project was approved by two ethics committees:
The Faculty of Health ethics committee.
Morecambe Bay Local Research ethics committee (LREC).
All the LRECs were covered by Locality Agreements in Cumbria and Lancashire.
For the duration of the study, all research team had Honorary Contracts with Morecambe Bay Primary Care Trust (PCT).
Comprehensive information was received by the participants and they had opportunities to discuss their involvement.
At no time was there any pressure to participate.
24 hours were given as a minimum to make participation decision in the project to participants.
Was the data analysis sufficiently rigorous?
Yes it was.
There was no comprehensive discussion about the method used for data analysis.
The authors created data sets using four broad categories and they provided descriptive tables on children’s age, education, use of health technology and communication style.
Yes it was.
(figure 1) showed how rigorous the data analysis was:, thematic analysis using Attride-Stirling’s approach of basic themes grouped into organizing themes and then global themes.
Is there a clear statement of findings?
Yes, there was a clear statement of findings, there was a discussion of the evidence, but no discussion about the credibility of their findings. Findings were discussed in relation to the children’s communication in multi agency services.
Yes there was a clear statement of findings.
Their findings were explicit.
There was a discussion of the evidence.
There was a credibility discussion about their findings.
The authors discussed findings in relation to the original research question.
10-How valuable is the research?
Yes, the study does make a contribution to understanding the consultation of children with complex care needs used in multiagency services.
The authors didn’t discuss new areas of research.
There was a considerable contribution on involving disabled children in service delivery and research but there is still a gap about involving complex care needs children.
The project was valuable because it provided families with a better understanding of how practice should be, and provided opportunities for a mutual relationship between professionals through the exchange of information.
The research identified new areas where research is necessary in the future. There was a greater impact on practice by this study and it lead to a better quality of life for both children and their families.
Limitations of (Watson et al. 2007)
The major limitation in this study is that there was not comprehensive discussion about methods used for data analysis. Moreover, the authors created data sets using four broad categories: friendship and communication, relationships with professionals, school life, and the things that children like and dislike. With such a small sample size, 18 children and adolescents with complex health care needs, between 2-15 years old, it is very difficult to address the effect on the result of bias.
Limitations of (Carter et al. 2007)
There are some limitations in this qualitative research. The first one is in methods; the authors tried to carry out Appreciative Inquiry but then used Attride-Stirling’s approach. Moreover, methods were combined into three stages as another shift in method. Each agency / discipline was not fully represented. There was an absence of involvement of general practitioners. There was a limitation in the appreciative interviews because of they were interviews at a particular point in time. Furthermore, one child was included in the study due to other children being too young to participate or having severe disabilities. Last but not least, the study failed to recruit ethnic minority group parents and children.
The main focus of these two papers was to find out the impact of multidisciplinary or multiagency working on disabled children and their families. Regarding the two studies’ findings in relation to multiagency working (Watson et al.2007) authors reported that seeing many professionals did not cause any difficulties for the majority of children in the study. However, difficulties did appear when professionals attempted to talk to the child directly. Communication between the key worker and the child was reported as weak or limited. One child expressed their feeling of seeing many professional as a silly and boring thing to do, while another child showed a close relationship with their key worker by recognising their name. In general, this study did attempt the challenge of involving children with complex health care needs, but it is not a reliable study because it used a small sample number of children.
As regards the findings of the second paper (Carter et al.2007), they chose two areas from the guidance plans, “the 10 statements”, as they felt that they reflected the two core areas of guidance which were: the most important As a consequence, authors stated the importance of making children and parents more satisfied and less isolated, and the crucial role of support and voluntary groups. Moreover, families and people from different agencies have to be cooperative when choosing the important role of coordinator for the long term, as this is where parents will seek help.
Evidence from disabled children with their families in multiagency and multidisciplinary working
Atkinson, Wilkin, Stott, Doherty and Kindel (2002) as cited by (Carney 2009) stated that multiagency working benefits organisations and individuals; it gives a broader perspective by providing enhanced understanding of the matters and improved connections with other agencies, and constructive experience on the whole, respectively. Moving towards better outcomes over the past decade, government has adopted integration of services for children and their families. Integration has taken various appearances such as, putting different types of proficiency together.
There are some positive outcomes that have been identified in the review of multidisciplinary team working as a model of multiagency working in health care. (Borrill et al.) came to the conclusion that there was a reduction in hospitalization and cost in terms of primary health care teams; development in the provision of services; growth in health care access; treatment, follow-up and detection are improved, and patient and staff satisfaction and motivation are enhanced
Few studies have focused on the impact of multiagency working and multidisciplinary approaches with disabled children and their families (Carter et al. 2007, Townsley, Abbott and Watson 2004, Watson et al. 2002, Watson et al. 2007). The majority of these studies carried out qualitative research methods to find out the key features of successful multiagency working practice and how to make children and parents more satisfied and not isolated, improved and enhanced their quality of life, and the crucial role of support and voluntary groups.
Many studies have focused on the positive impact of key worker systems in multiagency services for disabled children and their families (Greco and Sloper 2003, Greco et al. 2005, Greco et al. 2006, Liabo et al. 2001, Sloper et al. 2006). These studies have included comparisons between families with and without key workers. This model stated positive outcomes for families having key workers like enhanced quality of life, less isolation and feelings of strain, better relationships with services, and quicker access to services and reduced levels of stress. (Greco et al. 2005) authors have stated many advantages of having a key worker service in multiagency working for parents and children, as they can relate their concerns to one person who can then ensure the family’s needs are met and coordinate services. Having a key worker avoids duplication of telling the same story to professionals, and families received better information. Also, having a key worker enhanced the relationship between the child and their family by providing them with a mediating role and through building relationships with disabled children.
Key working is a service, involving two or more agencies, that provides disabled children and young people and their families with a system whereby services from different agencies are co-ordinated. It encompasses individual tailoring of services based on assessment of need, inter-agency collaboration at strategic and practice levels and a named key worker for the child and family (Care Coordination Network UK, 2004).
Also there was a range of studies which have mainly focused on staff views (Tait and Dejnega 2001, Presler 1998, Abbott, Townsley and Watson 2005). These studies illustrate the positive impact on staff when they use multiagency working for disabled children. For instance, there was enhanced communication and improved relationships with complex health-care need children, development in their work lives and their professional skills, enhanced teamwork with collaborators and more satisfaction in their role.
Two studies have discussed two services; (Young et al. 2008, Robson and Beattie 2004). The former talked about an Early Support programme to improve integrated services for disabled children and their families between 0 and 3 years old. The aim of this study was to improve and enhance outcomes for disabled children and their families, and to find out the relationship between integrated services and the impact of ES in terms of cost effectiveness and their benefits.
The other study (Robson and Beattie 2004) is a coordination project by Diana Children’s Community Service and multiagency services using qualitative methods e.g. interviews, questioner , focus group to name but a few. The results were effective collaboration within and between the services for disabled children and their families by enhanced and improved family support and satisfaction; a sense of control and a feeling of empowerment; equivalent partnerships between families and professionals, with duplication and service gaps reduced.
Sloper 2004 identified many negative outcomes of multiagency or multidisciplinary working on disabled children and their families when there are barriers to facilitating the integrating of services such as: when there are unclear roles and responsibilities; aims and roles are not shared among agencies; there is disagreement on aims; there is low quality of management including ongoing training, weak leadership and communication, and sharing of information; poor IT systems, and poor relationships with professionals.
Many studies have focused on the advantages of facilitating multiagency working generally as the most holistic approach for disabled children and their families and on multidisciplinary working specifically in terms of team working. However, there was a lack of studies which concentrated on the drawbacks of the two working models. This results in a need to address more focus on the negatives for future studies for both multidisciplinary and multiagency working with disabled children and their families. In my opinion, from my prospective experience in the disabled children association in Jeddah in Saudi Arabia, I have identified what type of model my organization followed: ‘multidisciplinary working’ alone which recognises that all professionals are working separately. My recommendation is to implement the holistic approach or “transdisciplinary working” which focuses on integrating services and adopting the key worker system to gain positive outcomes for the services in DCA.
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