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Supporting young people with type 1 diabetes in their transition to secondary school: A comparison with the cleft lip and palate service

Anna Simmons, Zoe L Edwards, Katie Wilkinson, Jessica Stephenson

The transition from primary school to secondary school is an unsettling time for many children and can be further complicated for those with a physical health condition. At Alder Hey Children’s Hospital, the diabetes team and the cleft lip and palate team have developed group interventions which provide opportunities for young people to share experiences with others who have a similar health condition and to discuss hopes, concerns and strategies to help them cope with moving to secondary school. Evaluation of the interventions demonstrates the role of the group in facilitating psychological adjustment and supporting children to develop greater confidence in their ability to manage new or difficult situations associated with the change in educational environment. This review presents the similarities and differences between the interventions the two teams offer, and suggests the core components needed to make a successful group.

Transition to secondary school can be seen as an opportunity to meet new people, learn about a wider range of subjects and gain greater independence (Young Minds, 2011). However, along with these exciting changes comes uncertainty about what to expect from a new school, which can contribute to feelings of anxiety in some children (Anderson et al, 2000).

This article explores the additional challenges that children and young people (CYP) with a physical health condition may face during transition compared to their healthy peers. Additionally, it explores how targeted group work with CYP who have either type 1 diabetes or cleft lip and/or palate (CLP) has supported them and their families through this process.

Considerations during transition
A study of one small group of children found that their worries about starting secondary school included new friendships, bullying, an increase in academic work and adjusting to different teaching methods (Chamberlain, 2015). Along with the changes in educational environment and social support, young people also have to deal with the cognitive, psychosocial and emotional changes that are coupled with adolescence (Young Minds, 2011).

Children with a physical health condition may have additional considerations when adjusting to a new school. For example, a child with type 1 diabetes may need to negotiate time out of class to check their blood glucose levels and administer insulin. Furthermore, many children in primary school will have had a close support network familiar with their specific difficulties, such as a child with CLP whose speech may be difficult to understand. Therefore, children with a physical health condition may need to develop sophisticated understanding about their condition alongside enhanced confidence and communication skills in order to explain their condition to the teachers and larger peer group they meet at secondary school.

Children and young people with health conditions face more psychological distress than their healthy peers (Hysing et al, 2007; Compas et al, 2012). This increases the risk of developing psychological and behavioural difficulties which may impact on their educational development and future occupational opportunities (Meltzer et al, 2000; Glazebrook et al, 2003). Stressful life events such as moving to secondary school can have an impact on a child’s health condition (Compas et al, 2012). Therefore, good planning and management of transition for these children is essential. Mercer et al (2015) suggested that effective psychological services for CYP and their families anticipate vulnerable milestones throughout the course of childhood and adolescence – in this case, transition – and in response to this deliver preventative interventions to mediate early difficulties.

Group interventions
Two multidisciplinary teams based at Alder Hey Children’s Hospital have developed group interventions specifically aimed at supporting young people in their transition to secondary school.

The Alder Hey Diabetes Service comprises a multidisciplinary team made up of specialist nurses, consultants, dietitians and clinical psychologists. Patients are reviewed around four times a year at specialist clinics and receive relevant input on medication, nutrition, exercise or emotional wellbeing, as and when needed.

The CLP team is part of the larger North West England, Isle of Man and North Wales (NWNW)  Cleft Lip and Palate Network. The network aims to offer lifelong, specialised multidisciplinary management to produce the best outcomes for patients in terms of optimal physical function, psychological adjustment and appearance.

Patients are reviewed at specific milestones: typically birth, pre- and post-lip/palate repair, and at 18 months and 3, 5, 10, 15, 18 and 21 years of age. Additional input from the multidisciplinary team of surgeons, nurse specialists, speech and language therapists, clinical psychologists, speciality dentists and orthodontists occurs as needed.

While the two conditions and the physical health interventions are very different, there are many similarities in the psychosocial challenges CYP with these conditions may face. A higher rate of depression and anxiety has been noted in both people with CLP and those with type 1 diabetes (Grigsby et al, 2002; Hunt et al, 2005). CYP may report feeling different from others or self-conscious about their condition. Questions and comments from others can contribute to difficulties within interpersonal relationships or development of a negative self-concept (Hunt et al, 2005; Dovey-Pearce, 2007).

Transition days
The transition days, known as School Change Days (SCDs), have been offered by the two services for a number of years and have evolved independently. The SCDs have been adapted to suit different cohorts of CYP and are dependent upon the resources available within each team. This review focuses on the SCDs that took place in 2015.

A review of other paediatric services in the UK found that group interventions have been beneficial for CYP with a physical health condition. Children who attended the Outlook group at Frenchay Hospital, Bristol, reported a reduction in frequency of teasing and the level of distress it caused at school, as well as reduced levels of anxiety (Maddern et al, 2006). Specific transition days have also been successfully run in other services across the UK. Maddern and Owen (2004) reported on an Outlook summer group and described the use of social skills training and cognitive behavioural therapy approaches to support the transition to secondary school.

Aims
Both SCDs aim to offer an opportunity for CYP to share hopes and concerns about the transition to secondary school. They aim to provide CYP with strategies for managing new or challenging situations with confidence, thus hopefully increasing resilience and reducing difficulties during the transition process.

Organisation and running of the da
All CYP who are cared for under the Alder Hey Diabetes Service or NWNW Network who will be transitioning to secondary school in the next September are invited to the relevant day. In 2015, 91 CYP were invited to the CLP day, of whom six attended; 15 CYP were invited to the diabetes day, of whom five attended.

The relatively low attendance rate has resulted in the teams developing new ways to recruit more CYP, including a new leaflet to be handed out in multidisciplinary team clinics and an increase in the frequency in which the day is mentioned in clinics.

Both days are delivered the summer before the young person’s transition to secondary school. The CLP day takes place in June, as the team have identified that this gives the opportunity to liaise with the primary and secondary schools before the summer holidays and, therefore, resolve any concerns that the CYP may have. The diabetes team have opted to run their day in July, as they have contact with the secondary schools via running a diabetes awareness day for teachers in June and October each year. The CLP day is delivered by clinical psychologists as well as speech and language therapists, and the diabetes day is delivered by a nurse specialist, dietitian and clinical psychologist. Both transition days comprise a mix of presentations by staff, interactive learning activities and group discussion (Table 1).

The teams have observed the value of starting the day with icebreakers, allowing the CYP to feel more comfortable interacting with one another throughout the rest of the day. Interactive activities help to reinforce the information and encourage the CYP to reflect on what they have just learnt. In addition, they allow the teams to check that everything has been understood. For example, the diabetes SCD involves a presentation on how to manage type 1 diabetes in secondary school. This is followed by a quiz in which the CYP are split into teams and win prizes by answering questions related to the information they have just learnt.

Practical activities help CYP to engage and encourage them to experiment with the skills that the day aims to develop, such as communication and problem-solving. The opportunity to practise skills and be successful in tasks helps build the young person’s confidence in using them in the school environment. For example, on the CLP day, young people learn about methods of non-verbal communication, using gestures, eye contact, facial expressions and body language to support their verbal communication.

Involvement of parents and friends
The CLP day invites parents to participate in a separate session exploring parental anxieties about their child starting secondary school and offers suggestions for managing questions, comments and bullying. Research into transition to secondary school has shown that parents are likely to have similar worries to their children. Therefore, it is recommended that efforts to ensure a positive transition should also include parents (Zeedyk et al, 2003). In addition, specific types of parental involvement during the transition period, such as participating directly at school, have been identified as significant in the young person’s academic success (Falbo et al, 2001). This again suggests that guidance for parents as to how they can support their child during transition may be important.

Parents have an important role in helping their child to develop positive self-esteem (Coopersmith, 1967). The CLP team offers parents ideas for building confidence and resilience, such as recognising achievements, supporting their children to make choices, giving them responsibilities and developing positive self-talk. Involving parents may also allow CYP to practise their strategies for dealing with difficult or new situations at home.

In comparison, the diabetes SCD invites the young people to bring a friend. The friend is encouraged to be as much a part of the day’s activities as the individual with type 1 diabetes, enabling them to develop understanding about the condition and develop skills in supporting their friend more effectively at secondary school. Peer relationships and support can be a protective factor in relation to a range of difficulties, and a high level of perceived peer support is a significant predictor for a successful transition (Waters et al, 2014).

Reunion day
The CLP team runs an additional reunion day, to which all families who attended the original SCD are invited. In 2015, this was run in October, towards the end of the first school term. It provides an opportunity for group discussions to reflect on how the transition has gone and to hear about things that have gone well and things that have been more difficult. A presentation is delivered about next steps and what to expect from adolescence.

Evaluation
Evaluation forms are completed at the end of the sessions; in 2015, 96% of participants completed the feedback forms that asked for qualitative information, such as whether the group had addressed their concerns, what was most useful about the day, whether they would recommend it to others and what they would change.

Overall, it appears that participants enjoyed the interactive activities and the opportunity to meet other people in a similar position (Box 1). Suggestions for changes included additional breaks and a longer icebreaker activity at the beginning of the day. Other feedback from 2015 includes the following:

  • 100% of young people and their friends who gave feedback about the diabetes day agreed it was helpful.
  • 100% of parents who gave feedback about the CLP day would recommend it to other parents.
  • 100% of young people who gave feedback about the CLP day identified that the sessions covered the topics they had wanted to talk about.

The CLP team also ask CYP and parents to complete measures before and after the session to assess confidence in different areas relating to transition (e.g. problem-solving at school and managing bullying). In 2015, all of the CYP gained confidence in each area, and all parents showed greater confidence in supporting their child.

Conclusion
Transition from primary school to secondary school has consistently been identified as a difficult time for CYP, sometimes complicated further by the practical and psychological aspects of living with a physical health condition.

This review of two different transition days run by two teams at Alder Hey Children’s Hospital has demonstrated that specialist group interventions in preparation for this change can be supportive to CYP, allowing them to meet others who have had similar experiences, discuss worries and concerns about the move to secondary school, and work together to share ideas or develop new coping strategies. These components can have an overall impact on confidence to problem-solve when faced with new or challenging situations.

Specialist input for CYP is clearly essential, but supporting parents, friends and schools to anticipate vulnerabilities and understand difficulties can provide a more holistic approach and establish essential and sustainable support networks. A degree of flexibility is important so that each service can deliver an adapted intervention, but it appears there are some key components to consider for any service hoping to develop a school transition day (Box 2). The teams are looking forward to running these groups again in the future.

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