Research and commentary

Improving transition for young people with cerebral palsy

Transition from child to adult healthcare services remains problematic and variable between health boards and can be distressing for families.

Transition from child to adult healthcare services remains problematic and variable between health boards and can be distressing for families.

Wright AE, Robb J and Shearer MC (2016) Transition from paediatric to adult health services in Scotland for young people with cerebral palsy. Journal of Child Health Care. 20, 2, 205-213.

Background

Transition from child to adult healthcare services remains problematic and variable between health boards and can be distressing for families. An area in need of improvement is co-ordination and communication between health services and educational, social services and adult health services.

Aim

To explore the perceptions of community paediatricians in Scotland of services for young people with cerebral palsy who move from child to adult services and identify how care could be improved.

Methods

Semi-structured interviews were conducted with consultant community paediatricians (n=9), associate specialist community paediatricians (n=2), GP (n=1) and physiotherapist (n=1) from across 12 Scottish health boards. Interviewees were asked to describe the process of transition for young people with cerebral palsy, identify strengths and areas in need of improvement. Interviews were recorded and transcribed verbatim before using framework analysis. 

Findings

Nine themes were identified, eight of which are described in the paper.  In summary, themes focused on the transition process, adult services and impact on young people and their families.  Transition services were not synchronised between services (young people with cerebral palsy may be under the care of multiple specialities), in some cases transition was well co-ordinated, but the differences in health care between child and adult care created concern for families. Healthcare professionals in this study mainly reported families’ concerns as focusing on inconsistency in consultant led reviews, reduced therapy and reviews led by a psychiatrist rather than a community paediatrician for those with a learning disability. 

Co-ordination and communication between all agencies, a transition nurse linking professionals, transition clinics and increased awareness in adult services of the needs of young adults were some of the aspects identified as needing improvement.  

Conclusion

The study highlighted wide variation in transition services between and within the 12 health boards.  Multiple and separate transition services were experienced by families across health, education and social care agencies with limited sharing of information and co-ordination.  The study recommends that any improvements in transition depend on major changes to adult services.   

Commentary

Co-ordinated and individualised transition planning for young people with complex needs  

Effective transition services for all young people with a long-term condition enables their learning to self-care and partnership with healthcare professionals to develop and  maintain healthy behaviours into adulthood (Viner 2008).  For young people with cerebral palsy or a learning disability, who may require multiple specialist services, transition can be more complicated. 

This study raises our awareness of transitional issues for young people with cerebral palsy from the perspective of care professionals’ reports of families’ concerns. However, research has been conducted with this patient population describing their experiences of transition that complements this study (Racine et al 2014, Larivière-Bastien et al 2013, Davies et al 2011). Young people with cerebral palsy have expressed apprehension caused by the loss of their close relationship with paediatric care. 

Other concerns mirror those of health professionals in this study and describe a lack of communication between providers of care and information  in preparation for transition (Larivière-Bastien et al 2013). Parents and young people describe feelings of abandonment at the time of transition and a lack of knowledge regarding their condition by adult services  (Davies et al 2011, Larivière-Bastien et al 2013). The diversity in transitional services and separate transitions across health, education and social work for young people with complex needs, apparent in Wright et al’s (2016) study, can only add to their anxieties.

It remains to be seen whether National Institute for Health and Care Excellence (NICE) guidelines for transition to adult services will increase the quality and consistency of transitional services (NICE 2016).  Variation in transitional pathways across providers is almost inevitable with local adaptations of transition models, differing knowledge and experience of healthcare professionals and funding availability.  As Wright et al (2016) highlight, we need to know what impact this variation has on young people with cerebral palsy into adulthood.  However, a priority area for improvement should be in tackling the variation in transition for young people with complex needs. Individualised transition planning for young people with cerebral palsy led by a professional responsible for co-ordination of transition might improve the consistency of care.

 

References

  • Davies H, Rennick J and Majnemer A (2011) Transition from pediatric to adult health care for young adults with neurological disorders: parental perspectives. Canadian journal of neuroscience nursing. 33, 2, 32-39.
  • Larivière-Bastien D, Bell E, Majnemer A et al (2013) Perspectives of Young Adults with Cerebral Palsy on Transitioning from Pediatric to Adult Healthcare Systems. Seminars in Pediatric Neurology. 20, 2, 154-159.
  • National Institute for Health and Care Excellence (2016) Transition from children’s to adults’ services for young people using health or social care services. NICE, London.
  • Racine E et al (2014) Ethics challenges of transition from paediatric to adult health care services for young adults with neurodevelopmental disabilities. Paediatrics & Child Health. 19, 2, 65-68.
  • Viner RM (2008) Transition of care from paediatric to adult services: one part of improved health services for adolescents. Archives of Disease in Childhood. 93, 2, 160-163.

Compiled by Linda Milnes, associate professor in children and young people’s nursing University of Leeds, on behalf of RCN’s Research in Child Health network’s core community

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