BIOPS
Research type
Research Study
Full title
An interventional study to evaluate impact on patient perceived well-being of an innovative model of biopsychosocial support for children and young people living with sickle cell disease
IRAS ID
217377
Contact name
Banu Kaya
Contact email
Sponsor organisation
Barts Health NHS Trust
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
The haemoglobinopathies are inherited disorders of haemoglobin production and function. They are chronic conditions where life expectancy is reduced. Children and young people living with haemoglobinopathies have multiple biological, psychological and social needs.
It is estimated that between 10-37% of children and young people living with a chronic health condition are at risk of developing a psychological disorder (Edwards & Titman, 2010). From a psychological perspective, children and young people living with haemoglobinopathies may experience challenges with: adjusting to their condition(s); treatment adherence; lifestyle choices; procedural and treatment decision-making; pain; cognitive impairment; self-esteem; mood; anxiety; and talking about their experiences with others.
This population may also experience a number of social challenges. Firstly, there may be stigma attached to the health condition which may affect social relationships, and which may be internalised and negatively impact on self-esteem and self-concept in this group. Certainly there is much stigma attached to Sickle Cell Disease (SCD) within certain African cultures which can have a hugely detrimental impact on family relationships and functioning. Illness and pain may also affect school attendance, having a negative impact on academic performance and achievement, as well as social functioning. There may also be an impact on family members who may have to stop working in order to care for the child or young person.
The NHS Plan (DoH, 2000) emphasises the importance of patient-centred care, and there has been emphasis on the psychological well-being of children in Standards 6, 7 and 8 of the NHS for Children and Young People document (DoH, 2003). Similarly, NICE guidance recommends psychological assessment and support in a number of health conditions affecting paediatric populations. The UK Haemoglobinopathy Forum has suggested that: one WTE psychological should be provided for every 200 paediatric patients living with SCD; all children, young people and their families living with SCD should have access to a Clinical Psychology service; and that Cognitive Behavioural Therapy (CBT) should be considered in addition to standard pain management in this population. However, provision of such support is patchy across the country, and psychological services for children and young people with haemoglobinopathies remain under-resourced in many areas.
Various self management interventions for chronic conditions is available but their impact is not clear.Proposed innovation:
We propose an innovative model of care that will address the biological, psychological and social needs of children and young people living withsickle cell disease. This project builds on preliminary work which has identified specific needs of children and young people striving to cope with complex chronic conditions like SCD and thalassaemia; this included a research project looking at the needs of young people with SCD and thalassaemia (City University and Barts Health NHS Trust) and a group therapy intervention organised by the Paediatric Liaison Team at the Royal London Hospital.This programme will: strengthen integrated health and social care; improve the quality and safety of care; build more robust partnership working between health and social care, as well as the voluntary and community sectors; strengthen the involvement of service users and their families/carers; promote self-management of haemoglobinopathies; offer a preventative model of psychological care; involve a new and creative way of using information technology through the development of an application; build on and enhance the skills, expertise and confidence of the Paediatric Haematology service; and increase efficiency and effectiveness to improve value for money for Barts Health NHS Trust services.
The intervention has three separate but related components:
1. Biological. A digital application will be used which would allow patients to record details of medical appointments, treatment plans, treatment adherence, fluid intake, exercise and blood levels (Hb, Iron, oxygen etc.) in a diary. From these records, graphs could be displayed which would allow patients to assess for changes in their levels in response to treatment adherence; this may promote treatment adherence and improve both the patient’s understanding of their condition and its treatment, as well as their confidence in managing their health. In recording details of hospital appointments, it is also hoped that the application may lead to a reduction in missed appointments, thereby reducing costs to services and potentially leading to better health outcomes for the patient. In addition, the application could provide medication reminders to promote treatment adherence. The application could also contain information about relevant websites and support groups patients could access. Usage of this data will be captured. At the end of the study feedback from patients will be used to design and commission a bespoke APP for routine use. The patients will aim a better understanding of their condition and health needs.2. Psychological. The model would offer two group interventions for this population, in addition to the existing individual support available to this clinical group. The first group would be a three-hour session offered to seven to 12 year olds living with haemoglobinopathies. The session would utilise the skills of a Clinical Psychologist, Clinical Nurse Specialist, an external facilitator and mentor and would involve educating the children about their condition, answering questions about their condition, and discussing the psychological challenges of managing their condition, as well as strategies for addressing these.
The second would be a four-week group CBT intervention for 13 to 17 year olds living with haemaglobinopathies that would run quarterly. This group would involve educating patients’ about their condition and its treatment as well as providing a space to discuss the challenges of living with their condition and strategies for managing these. This would include addressing pain management and stigma and questions the young people might have about transition points and the future. The mentors would be a valuable resource to give a lived perspective on these issues to the young people in the group. Homework in between sessions could be completed using the application we are proposing to develop. Similarly, scores on measures of psychological well-being, pain, and quality of life could be recorded using the application to provide an ongoing assessment of these various domains.
Both groups would offer patients a level of peer support not available through the provision of individual therapy.
3. Social. A mentorship scheme would recruit suitable adults living with haemoglobinopathies who would be asked to come to talk to and inspire young patients, and to provide them with ongoing social support for managing their condition. These mentors would be identified from the adult population accessing Haematology services at the Royal London Hospital, and would be provided with formal training in mentoring and coaching skills. These individuals would be assessed for suitability by the Haematology team and DBS checks organised. Additional support would be provided from the Haematology service in order to fulfil their roles as mentors. Not only will mentors provide additional peer support but it is felt that they will be particularly beneficial to patients who are more likely to identify with those who have been through experiences similar to their own.
All patients will be provided with standard documentation developed by the Haematology Service to support management of their condition at school. This includes information on adaptations that can be made to support children and young people during exams, as well as signposting to services where cognitive difficulties or problems with academic achievement are observed.
REC name
London - Bromley Research Ethics Committee
REC reference
17/LO/0388
Date of REC Opinion
27 Mar 2017
REC opinion
Unfavourable Opinion