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Wheelchair Skills Programme for Young People

The project revolves around young wheelchair users and the access they have to current training. At the moment wheelchair skills training for young people in Northern Ireland is limited. External organisations are sought for implementing training from mainland UK. Northern Ireland's Regional Wheelchair Training Occupational Therapist (OT) has independently designed a wheelchair skills training programme, which can be implemented and graded to suit the clients' needs. The programme will be adapted and implemented as a standardised and measurable wheelchair skills test initially, with a training programme to follow. This will hopefully standardise the level of training being given to all young wheelchair users, and improve services across Northern Ireland.

From the outset parents of young wheelchair users have been vocal in the lack of services for their children. In 2008 the "Proposals for Reform of Wheelchair Services 2008" was created to establish a greater structure to enhance services for wheelchair users, which was greatly influenced by service users and parents alike. It is this document that has meant our project has the evidence base to proceed to further enhance services in areas where it is much needed.

Without the voice of members of the public, friends, family of service users, this project would not exist, therefore thanks must go to them for speaking up.

Experiences of rehabilitation of adults undergoing limb reconstruction with a circular frame following trauma

Since the introduction of Major Trauma Centres across the UK in 2010, people who are involved in traumatic incidents are receiving the urgent specialist care required in a more timely manner. One of the areas of development has been in the treatment of severe lower leg injuries. Previously patients may have needed an amputation. However, more people who have severe lower leg trauma are now able to be treated using a surgical technique called external fixation. This involves a metal frame being placed around the leg to stabilise severe fractures and help with healing bone and soft tissues. However, this must be in place for several months, meaning that people must learn to adapt and cope with a bulky frame in everyday life. There is a small body of research conducted with other patients, such as adolescents with bone cancers or congenital limb deformities, that indicate that patients find resuming their usual activities of daily living and mobility difficult as well as feeling lonely or self-conscious. This research project aims to understand the experiences of adults who have circular frames on their legs after trauma. A qualitative study design has been chosen to develop an understanding of how people manage their usual activities and roles. Using semi-structured interviews, it will also explore the type of rehabilitation services received by people, the perceived benefits and challenges experienced when using these services and what is important to people whilst they recover and rehabilitate. It is hoped that this information will help to improve rehabilitation pathways and services for trauma patients who require treatment with external circular frames.

Increasing physical activity in older people with chronic pain (iPoPP)

The study aims to develop an intervention that increases the time people spend walking that can be used in older people with long-term pain. We then want to conduct a small study to test whether enough people will take part, and whether the new intervention appears to work. The study questions will be answered by comparing a group who receive the treatment with a group who receive usual treatment. In a randomised controlled trial, the decision about which group a person joins is random. Those who agree and are eligible to take part will be assigned to either receive the iPoPP walking intervention, to receive information to help them manage their pain or to continue receiving their usual care. Participants will wear a monitor that records their levels of physical activity for 7 days once before they receive the intervention and once 6 months later. All participants will also complete a questionnaire 2 months later. A group of 10 participants will be interviewed to ask about their opinions on exercise and the intervention. The study may provide a way of increasing walking among older people with long-term pain that can be delivered by someone working in general practice surgeries. The new intervention will be designed to be brief, easy to deliver and be delivered by Health Trainers or Health Care Assistants who work closely with general practitioners or nurses in general practices. It is anticipated that increasing the physical activity levels in older people with long-term pain will have a number of clinical benefits for patients physical and mental health including improvements in their pain, physical performance, mental health and improving their overall quality of life.

Transition to adult services by young people with life-limiting conditions in Belfast and Dublin: a realist evaluation using mixed methods (TASYL study)

Background
Improvements in care and treatment have led to more young people with life-limiting conditions living beyond childhood, which means they must make the transition from children’s to adult services.The loss of long-standing relationships with providers of children’s services combines with poor co-ordination of services to make this a daunting prospect for young people and their families. However, there is little evidence on transition services in palliative care, with few models of good practice in the literature. 

Design

Realist evaluation is a relatively new approach for synthesising research. It seeks to identify more than the cause and effect of interventions, rather, it seeks to determine what works, for whom, in what circumstances. The approach is concerned with the intervention, the context, the mechanism and the outcome. Realistic evaluation recognises the same intervention may produce different outcomes in different contexts, therefore, it seeks to establish the ways in which the context influences the outcomes. The approach also seeks to isolate the mechanisms the intervention produces in an attempt to understand the crucial hidden reactions to the intervention and the influence this has on the outcomes. The aim of a realistic evaluation approach is to determine what underlying mechanisms are triggered by interventions and also how the context influences the intended or unintended outcomes. As realistic evaluation is a theory driven approach, the produce is not a judgment of whether an intervention works, it takse the form of adjustment to our understanding of how an intervention is believed to work with the development of a refined theory rather than a concluding theory.

Methods

• An online questionnaire survey of health, social, educational and charitable organisations providing transition services to young people in Belfast and Dublin to identify current practices.
• Semi-structured interviews with young people with life-limiting illnesses who have experience of palliative care services provided by a Health and Social Care (HSC) Trust in Belfast and Health Service Executive (HSE) Area in Dublin.
• Two focus groups consisting of the parents or carers of the young people taking part in the focus groups.
• Semi-structured interviews with key service providers and practitioners in the identified HSC Trust and HSE Area.

Outcomes
The outcomes will be an overview of the transition services currently provided in Belfast and Dublin, together with a detailed description of the organisation of services in the identified HSC Trust and HSE Area, identifying models of good practice and the key factors influencing the quality, safety and continuity of care.

Knowledge, attitudes & behaviours towards fertility preservation

Today most people survive cancer. But cancer or cancer treatment could harm their ability to conceive a child or carry a pregnancy in the future, which could result in significant stress and anxiety. Advances in assisted reproductive techniques have given cancer patients who meet set criteria the opportunity to preserve their future fertility prior to having cancer treatment. However, the number of young cancer patients undergoing fertility preservation counselling and treatment remains low. Oncology providers may be influenced by various personal or institutional factors in deciding to offer fertility preservation consultation to their patients reflecting the challenges of actual fertility preservation care, while patients diagnosed with cancer face several factors that complicate their engagement in fertility preservation care.

While the discrepancy between practice patterns and available fertility preservation techniques is well described, a clear understanding of why fertility preservation is or is not appealing to children or teenagers diagnosed with cancer, their parents and their healthcare providers is missing.

In the current study, we aim to investigate knowledge, attitudes and behaviours towards fertility preservation. We will do this through a cross­-sectional survey of teenage and young adult cancer patients, parents of children or teenagers diagnosed with cancer and their healthcare providers. This will help us gain a greater conceptual understanding of patients' and providers' values. Moreover, results of our survey will help direct intervention designs to improve fertility preservation care and cancer survivors’ quality of life.

Data analysis will be carried out at the end of the survey. The results will be published in peer­-reviewed medical journals.