Aoife Grenham McNamee, Jennifer Ryan, Claire Kerr
Cerebral palsy (CP) is the most common cause of childhood physical disability. Approximately 170 children are diagnosed with CP on the island of Ireland every year, and an estimated 3,000 children and 9,500 adults currently live with the condition. People with CP can develop secondary musculoskeletal complications, including long-lasting tightening of muscles known as contractures, hip dislocations, and scoliosis. Secondary complications cause additional pain, discomfort, and expense for people with CP and their families. Many countries use musculoskeletal surveillance programmes to monitor hip development in children with CP so that health professionals can intervene early to slow or reduce the incidences of secondary complications. Research has shown the many benefits of surveillance programmes, including reducing levels of hip displacement, contractures, scoliosis, and pain in people with CP. Efforts have been made to introduce hip surveillance in the Republic of Ireland and Northern Ireland over the past decade. Physiotherapists in Ireland are part of a UK and Republic of Ireland network to support implementation of a surveillance programme that has been developed in the United Kingdom known as the “Cerebral Palsy Integrated Pathway” (CPIP). CPIP was developed originally in Sweden and first introduced in Scotland in 2013. However, there is no uniform implementation of CPIP for children with CP on the island of Ireland and no consistent approach for supporting health professionals to implement it. Two studies will be conducted to explore the implementation of musculoskeletal surveillance programmes in Ireland and the United Kingdom. In study one, we will collect information on the facilitators and barriers of implementing a surveillance programme from five different sites across Ireland and the United Kingdom. These sites include: the Central Remedial Clinic and Enable Ireland in the Republic of Ireland, all five Health and Social Care Trusts in Northern Ireland, NHS South-East England, and NHS Lanarkshire Scotland. We will collect information on the number of children with CP in the surveillance programme, the number and type of health professionals involved with implementing it, and the total number of people in the region for each site. We will also interview 50 health professionals or service managers across each site who are involved with implementing or delivering the surveillance programme. We will ask them about their thoughts about the programme, how well it is being implemented in their organisation, and what challenges they face. In the second study, we will collect information from 40 children with CP and their parents/guardians to explore how they feel about participating in a surveillance programme. Children with CP and parents/guardians who are entered into a surveillance programme from Ireland or the UK can take part in an interview. Children and parents/guardians will be asked questions exploring how they feel about participating in a surveillance programme, the effort it takes, if they understand the programme, and if they think it is effective. Findings from this project will help to create strategies to improve the implementation of surveillance programmes for children with CP, their families, and the services that support them.