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Development - Encopresis in children with learning disabilities

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VOL: 103, ISSUE: 14, PAGE NO: 43

Chris Lawes

PhD, MSc, BA, is consultant clinical psychologist; Leon Fletcher-Tomenius, MSc, BSc, is assistant psychologist; both at department of psychology, Colchester PCT, Essex

Lawes, C., Fletcher-Tomenius, L. (2006) Encopresis in children with learning disabilities. Nursing Times; 103: 14, 43-44.

Lawes, C., Fletcher-Tomenius, L. (2006) Encopresis in children with learning disabilities. Nursing Times; 103: 14, 43-44.

Chris Lawes and Leon Fletcher-Tomenius describe the development of a training programme and manual on encopresis for children with learning disabilities and how this was evaluated.

Encopresis is the repeated passage of faeces in inappropriate places, for example in clothing or on the floor, and may be involuntary or intentional. Children with learning disabilities have higher rates of encopresis compared with the rest of the child population. Twenty per cent of children with severe learning disabilities suffer from encopresis at 18 years of age compared with 3% of healthy developing five-year-old children and 1% of 10-year-olds (Loening-Baucke, 2002).

Encopresis has social and psychological effects for both children and families, yet there are few resources for professionals working with this group of children. Evidence-based practice exists on intervention for encopresis for normally developing children, while there is also good evidence-based practice on how to communicate with children with learning disabilities and with their parents and families. However, the evidence for the treatment of encopresis in this group is poor.

Use of interventions designed for children with normal development may need to be adapted to take account of the specific needs of children with learning disabilities and their parents.

Owing to these issues the need for a manual and training programme was identified.

Developing the manual

The first stage in this process was to secure funding for the development of the manual and training programme, after which a protocol for a formal evaluation of the programme was written. This described the objectives of the project (Box 1), the design of the evaluation and sample to be used. A timescale was also given which ran from submission of the protocol to the ethics and research and development committees in January 2005 to the completion of the project in February 2006.

Discussions were held with managers about which staff might be suitable to undertake the training. It was decided that school health advisers would be a suitable group as they had regular contact with children with learning disabilities. It was felt that the results of this project could be transferred readily to other groups of staff, such as health visitors, community nurses and school doctors.

A steering group was formed to provide direction for the project. Members included community nurses, a speech and language therapist, dietitian and psychologists. The principal goal of this group was to help develop the manual through multidisciplinary team working and to produce new literature and resources for the manual.

Design of the training programme and manual

The manual is divided into eight sections, which correspond to the family partnership model (Davis et al, 2002). This is based on the central relationship between the person helping and the person receiving the help. The core factors that make up the model are: working together, power sharing, complementary expertise, mutual respect and open communication and negotiation. There is extensive evidence that it is effective in helping children with learning disabilities and their parents (Davis et al, 2002). The manual also includes resources for children with autism.

Each section begins with a flowchart consisting of three parts - aims, actions to take and resources to see. For each flowchart there is a summary chart, which can be filled in and shared with the parents.

Training for school health advisers

The training programme and manual were based on three areas of evidence-based research:

 Communicating with children with intellectual disabilities;

 Work within the field of encopresis;

 Communicating with and helping families (Davis et al, 2002).

The training for seven school health advisers from three PCTs was completed over five days. The different sections of the manual were discussed as well as issues around communication with children with learning disabilities. This consisted of one day on the principles of communication and a second on Makaton sign language. Some of the training involved the use of role-play, which gave the school health advisers an opportunity to use the manual in a practical way.

Evaluation of the training programme and manual

A focus group was held after the training and following this the school health advisers were asked to use the training and manual in their practice for a term. They were then asked to attend another focus group, where their experiences of using the manual in practice could be discussed. The focus groups were taped and transcribed, and the transcripts of these focus groups analysed.

Applied policy research framework using thematic analysis was used. Data was analysed using the software programme Max QDA.

Results and discussion

Box 2 includes a selection of quotes from the two focus groups that relate to the project objectives.

The training programme and manual were perceived to be both useful and helpful in enabling the school health advisers to work with children with learning disabilities, and did make a difference in outcomes. The most useful parts of the manual and training were those that enabled the advisers to communicate and engage with children and families. This seemed to increase their confidence in helping children, which led to a change in their attitudes towards the children.

The information and materials were used according to the level of expertise of individual school health advisers and their previous experience of working with families. They did not rigidly follow the flowcharts that had been developed in line with Davis et al's (2002) family partnership model. This may be because they had not undergone the training associated with the family partnership model and the school health advisers were experienced. If the training was used with novice workers, such as nursing students, the way information was used may have been different.

It is hoped that the manual will also be suitable for training nursing students and other newly qualified frontline staff. Future development and evaluation are planned.

Reference:

Davis, D. et al (2002)Working in Partnership with Parents: The Parent Adviser Model. London: The Psychological Corporation.

Leoning-Baucke, V. (2002) Encopresis: Current Opinion in Pediatrics.Philadelphia, PA:Lippincott Williams and Wilkins.

Blackwell, C. (2003)A Guide to the Treatment of Encopresis.Newcastle: North Tyneside & Northumberland NHS Trust. www.enuresis.org.uk/.

Buchanan, A. (1992)Children Who Soil: Assessment and Treatment. Chichester: Wiley.

Lothian Group (2001) Tough Going: Childhood Idiopathic Constipation Management Pathway: A Resource for Health Professionals. www.nhslothian.scot.nhs.uk/quicklinks/RHSC_CONSTIPATION2.PDF.

Wheeler, M. (1998) Toilet Training for Individuals with Autism and Related Disorders: A Comprehensive Guide for Parents and Teachers. Dallas, TX: Future Horizons.

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